Our Life......

The rest of the story

2012-01-28T08:22:00.000-05:00

So have I clarified that basically what we are eating is a plant based diet?
Whole, living foods with tons of micro nutrients. Yes, I have 5 children who honestly are not all as excited about our newly acquired knowledge. *and subsequent dietary changes* The truth is...that's OK. They don't have to love it. At this point in time, our home is emptied of the "garbage" so their only options are safe. *with the exception of the bottom shelf of a small cabinet we have, when this all began I put a few things there. just in case?* I'm trying to think now...exactly how long has it been? Meat left our home in the fall...all dairy said farewell the beginning of December. I feel like we are almost to the point now where we may add in occasional "treats" of cheese/egg if I know where they come from. *happy chickens or cows, preferably from local families* The dairy aspect was a no brainer with the amount of allergies and asthma in our home. Little did we know, it was also the culprit of the acne issues several of us had.
I think that one of the most interesting thoughts I have taken away from this experience is, our bodies are screaming out for help. Through fatigue, pain, acne, frequent illness, unclear minds, ect and yet we have been so conditioned to run to a physician first, our source of nourishment dead last. I know there are many reasons we don't want to look at our food, but I can say without hesitation...it is completely worth it.
I don't feel like I'm missing out on anything, I don't have cravings for things that have zero nutritional value, and I never feel unsatisfied. In fact...the "satisfaction" that comes in knowing exactly what I'm feeding myself and my family...is beyond fabulous. Through this journey, we choose to believe that there is balance. If we are served a meal at someone else's home and it has foods we typically avoid...we realize that we will not shrivel up and die, if we consume it. :0) Our *made up* rule of thumb is *especially because our children still eat school lunch* that we are satisfied with 95% right...to the occasional 5% wrong. I will say, the only food that I have to watch my consumption of is cheese. It is my drug of choice *after reading The Kind Diet I understand why*. I have found that if I eat more than just a small serving of it...it will consume my thoughts and my taste buds. *funny, the food that was making me the sickest...is the one I loved the most*

If you are a woman, and thinking my husband will never get on board, I have a book for your hubby! My husband hates to read...he did however enjoy reading this one:The Engine 2 Diet. It is written by a firefighter about the challenge he gave to his Engine. My husband was sold after reading it! It made sense to him, they made it seem possible AND they have great recipes in the back of the book, that they cook at the firehouse. Ironically, I had watched Forks Over Knives *and loved it, because of the medical/science side* and later realized that Rip *the author of Engine 2* is the son of Dr. Caldwell Esselstyn Jr., the co-author of Forks over Knives. It encourages me to know that my children could grow up and share this knowledge with others as well.

Eating this way.
Feeling significantly better.
Seeing the impact food had on Grace's arthritis.

Led us recently, to seek the opinion of a nutritionally based, alternative medicine physician for Jacob.
Jacob has CP. It was caused by an enormous brain bleed at birth. Through imaging, you can see that a good portion of his brain is damaged and scarred. The CP causes increase muscle tone on the left side of his body. Due to a lack of use on his left side, his arm and leg on that side...are significantly shorter. The options that have been discussed by our *intelligent, loved, and trusted* traditional physicians are: botox injections for his tone along with an orthotic for his left foot. It is unlikely that his limbs will "catch up" in growth and so after puberty, we would talk about extreme, invasive surgeries to attempt symmetry through lengthening/shortening his limbs.

We really felt like what do we have to lose? Nothing could be as bad as the above option. So, I made the call to a doctor my brother recommended. *I know several families who see him. Some see him exclusively, others see him in addition to their traditional doc* Brace yourself for what you are about to read:
Our initial visit lasted 2 hours. After discussing our diet *which he was pleased with* he asked us to include ocean fish for Jacob, limit his gluten, and add a couple of supplements. *one of which is a pure form of Echinacea, that has changed our life!* Along with that, he did a thorough exam, noting the limb discrepancy...and said "We can work on that". He ended the visit with an adjustment *working very carefully around his shunt* and that was it. He made sure that Jacob was happy and comfortable with him and everything that he did. *which is different than having us hold our babies down for "necessary" procedures*
The results were/are: Jacob's left hip was released and immediately the muscle tone in his leg changed. His leg became "free"! His ankle was still restricted, but when holding him on my hip I could feel *immediately* the openness of his hip. His gait changed...he looked almost clumsy as he acclimated to his new freedom of movement. Approximately 4 days later, his gait looked beautiful in comparison to before the visit. Also, immediately following that appointment...our PT noted that his left leg was measuring longer. Long enough...that we had to remove the lift from his shoe, that we were using to buy us time. So...2 weeks later, we went for our next appointment, it was much shorter. *more like 15 min* This time he worked on his digestive system *we had never shared that Jacob struggles in that area* and his left ankle. Again, his ankle was "freed"...it was actually turning in for the first few days, again...until he acclimated to it. His leg is now the EXACT same length as the other and he has been regular as rain ALL week. *in fact we have been saying to each other, who knew such a tiny kid could have ALL of that inside?!*
I don't know what this looks like long term.
I don't expect Jacob to look like he doesn't have CP. *although I think it's possible*
I don't expect anyone else to choose our path.
I do know what the alternative is.
I couldn't be happier with the results we have seen globally.
Words cannot describe the relief I have from bouncing back and forth between doctors...wondering who is going to figure it out. It doesn't mean that I don't love and respect these people who have brought us to where we are. We do! They just weren't taught anything outside of traditional western medicine...they don't have experience with techniques that are "outside the box" and I love them no less because of it.

To revisit my previous lists...our diagnosis include:
*striking out the ones we are no longer medicated for/seeing symptoms of*

Allergies

~~Asthma~~
ADHD
Seizures
~~Reflux~~
~~Arthritis~~
Eczema

and now the previous list of side effects:

~~mood swings~~

loss of appetite
~~belly pain~~
~~suicidal thoughts~~
slowed growth
behavioral difficulties
~~pre-mature puberty~~
learning difficulties
~~bloody stools~~
flat personality affect
~~irritability~~
insomnia

This is a process. Our goal is to get the entire family into the alternative doctor.
We have also implemented counseling and therapeutic horsback riding into our lives.
All of which are aiding in our healing.

I encourage you to be inspired to change.
Feel good.
Live well.

where to shop?

2012-01-22T08:20:00.000-05:00

First of all...I LOVE Amazon.
I just do.
The past 2 years I have done most of my Christmas shopping on Amazon and have NEVER been disappointed.
Imagine my delight when I realized that I could do bulk shopping with automatic reorder at up to 15% off and free shipping! No membership fees...I can cancel whenever I want, no penalties...no commitment. love it! So that is where we are getting our toiletries and Kashi cereal bars. :0) *these are delicious and are only $15.20 for 6(six) boxes of them! So right around $2.50/box...I don't leave my house, they are shipped as often as I need and they are a perfect snack for heading to sporting events or horseback riding! I also have fresh fruits and vegies delivered to our door...through Green Bean Delivery! It's all about organic, beautiful food grown by *as local as possible* sustainable farms. I LOVE this. I can also add treats to my order as desired like...Quinoa, oats, amazing maple syrup, or soy sauce made in rum barrels YUMMY! Now...I obviously do still venture out to the store from time to time and when I do, I head to The Fresh Market, our local natural foods co-op, or even Kroger ...only in the natural foods section or looking for good non-GMO food.

There you have it...that's how we roll. We have a large family, we still have one modest income and if it's a priority, it can happen. We think of it as preventative medicine. :0)

I will update on where we are now soon...promise. There are actually good things filling up our life right now and I am so very grateful!

beautiful food

2012-01-20T15:29:00.000-05:00

just a sample of what we eat :0)

Oh yeah...and this girl,

eats her blueberries EVERY day...along with other anti-inflammatory foods and is OFF of all meds for joint pain/swelling...zero flare ups in nearly 2 months! :0)

Have a great weekend!

another recipe

2012-01-11T08:09:00.000-05:00

Easy, Inexpensive Granola

1       C nuts~roughly chopped *walnuts or almonds are my favorite*
2       C rolled oats *not quick oats ;0)*
1/2   C agave nectar, pure maple syrup, or whatever liquid sweetener you have
2       tsp salt
1       Tbs finely ground flax seeds
dash or two of nutmeg and cinnamon

Directions:

1. Preheat oven to 350 degrees
2. In a medium size bowl combine all dry ingredients.
3. Poor the sweetener into the oat mixture and stir to combine.
4. Lightly grease a baking pan and spread mixture out on it.
5. Bake for approx 20 min.
6. Let granola cool and enjoy!
Store left overs in an airtight container.

I make this a minimum of once a week. We eat it dry, or mixed with raisins or dried cranberries...I eat it with almond, coconut, or soy milk and mounds of fruit. So yummy and versatile!
ALSO...the house smells amazing. :0)

back to the present: a perfect storm

2012-01-09T07:40:00.001-05:00

Where I was...ended up being the "perfect storm" actually...to bring change.
As it turns out, my suspicious mass is a fibroadenoma, but I also have the perfect scenario to develop cancer.
My children are falling apart at the seams...partially from diagnosed disorders/diseases and partially from side effects of the meds that are supposed to be making their lives better.
I learned years ago why it is said that doctors "practice" medicine. Not that medicine is a bad thing, I stated earlier...many people would not be with us today without that "practicing" of medicine. I just wish that doctors studied nutrition and our body's ability to heal itself, as well. I am so very grateful for the knowledge that I have gained as a nurse and the many experiences I have had in medicine. It has made this journey even that much more interesting to me!
I heard *or read somewhere* that "when you are ready to learn, a teacher will present themselves."
I believe that. I also believe that teachers present themselves when you're not, you just don't notice them. ;0)
At the very moment we found ourselves in the "eye of the storm"...at our lowest point emotionally, frustrated with "medicine" and doctors who mean well but just don't have the answers either. The best recommendation being, pick the lesser of two evils...there is no "good" choice or perfect med...just a "better" one.
I was not satisfied.
I am still not satisfied with that answer.
I can almost understand that way of thinking when it comes to adults. We have potentially done much to wreak havoc on our bodies...but these are children. My gut is screaming to me that it has to get better than this. It has to.
I began reading a blog written by an old high school acquaintance. It is about her "waking up" through becoming vegan. I found the blog interesting...but what really drew me in was the fact that she looked like she'd had a face lift. I. Am. Not. Kidding. High school was a solid 20 years ago now and I am serious *no offense Colleen ;)* the facial structure of her face has changed. She has never been over weight, always been fit...but 20 years later, she looks outstanding. So there you have it, what drew me in initially was...her outward appearance.
I want to clarify that I was not looking to become "vegan"...or "vegetarian"...or "granola" or any of the other labels...I was looking for an alternative to what we have been doing, as it is not working for our family.
So, I headed to my local library and read the first book that I saw recommended on Colleen's site: The Kind Diet...and I read it.*I loved it, agreed with most of it* I followed that up by watching Food Inc. *I don't like to read or watch trendy things, so I had not yet seen this. Ended up outraged at the "food" industry and at the very least, determined to support my local farmers*and while on Netflix...took in Fat, Sick, and Nearly Dead where this guy was able to heal his body of an auto-immune disorder, through supporting his body nutritionally. The above three...once processed...tipped me over the edge. There has to be something to this.
And this is just the beginning. :)

That face...

2012-01-06T07:38:00.000-05:00

I'm stepping away from "the journey" for a moment.
An issue we have around our house is riding the bus.
Sometimes we can drive them, when we can't...they ride the bus.
Three days a week, Caleb stays after school for football, Emma rides home alone.
Every once and a while...this weighs on her, not because she is so incredibly close to her brother, but because he is a known, loved face.
Just the presence of one she knows so well, although they don't feel "close" to one another, brings comfort.
As I was thinking of how well I could relate to that feeling, I was immediately taken to our multiple hospital stays with our babies. Fighting the fear of the situation, the lack of control over what was happening to our children...the cold, sterile environment...the lack of a familiar face. Many of our hospitalizations were in Indianapolis...but, more than a couple of handfuls were here in town. I remember feeling so isolated...cut off from all that is "normal" and feeling like we were fighting a private war. If people did send texts or e-mails saying "let me know if you need anything" it nearly cut like a dagger.
I just need your face.
That doesn't sound like enough...it's inconvenient, you might feel uncomfortable in an environment of sick children and heart broken parents, no one enjoys coming to the hospital, I probably won't have much to say. Honestly though...all I really "needed" was your presence.
My mind then goes to Grace's open heart surgery...March 12, 2009...terrifying.
As we sit in the pre-op area...our baby with her paci and pink bows...heart physically broken and too big to work properly anymore, we hold her tightly for the last few minutes. We are preparing to hand over our daughter...to have her chest cut and split down the middle, so that they could literally hold her heart in their hands and attempt to make it better.

It was one of the hardest days of our lives. We were not alone that day though.

These faces were there. My brother and sister-in-law came to be our physical presence.
So that when we had to see this afterward...

We weren't alone. They stood with us. It matters. You matter...just your presence matters.
Don't worry about what to say...or how to react...just be there.

My situations have been medical, but you can "show up" for someone...anywhere.
It's called doing life together.
I encourage you to get in the game...share yourself, you're a gift. :0)

at the same time...

2012-01-03T05:41:00.000-05:00

One of my biggest struggles is, the medical knowledge I have...and my instincts/gut feeling/spiritual knowledge.
This is an area that can become blenderized in my head.
I long to have my children medication free.
Like it is tops my list of wishes and dreams.
I know that congenital anomalies are an exception to acquired disease.
Without significant medical intervention...2 of my children would not have made it past their birth.
I get that...I am grateful *beyond* for the gifts I have in them.
However...I would give anything to have my children not put a man made, foreign substance, chemical...into their amazing, pure, beautiful little bodies anymore.
I have one child out of 5 NOT on daily meds.
ONE.
Four of my children have chronic conditions that we have done everything external to eliminate.
I would say the "base" condition in all four is, allergies and asthma.
All with varying degrees of each.
One receives weekly allergy shots...following a rapid induction where he sat for nearly an entire day and was the recipient of 18 injections. A foreign substance...injected repeatedly into his body for hours, in an attempt to allow him to breath freely while he is outside. *he could not survive another football season without intervention*
In continuing with my desire to be transparently honest with you...I will make a list of "chronic conditions" that we currently struggle with...and then some of the side effects from the meds we have/are giving to eliminate the "condition":

Allergies
Asthma
ADHD
Seizures
Reflux
Arthritis
Eczema

Remember, these are our children.
We want them to be comfortable, able to participate in age appropriate activities without restriction, and we want them to thrive. I have never been afraid to think outside the box...try alternative therapies or techniques. *if it's logical and within reason*
Medication has never been our first line of defense. The ADHD has been my archnemesis. *with asthma as a close second* We. tried. everything *and continue to try alternatives* to prevent medicating. So know that we have attempted a great many things...and made significant environmental changes...to reverse symptoms. *including the loss of pets due to allergies, and new flooring throughout our home*
So, some of the side effects we have been oh so fortunate to experience are:
*not for the faint of heart*

mood swings
loss of appetite
belly pain
suicidal thoughts
slowed growth
behavioral difficulties
pre-mature puberty
learning difficulties
bloody stools
flat personality affect
irritability
insomnia

Keep in mind...this is just the "current" list of things we have dealt with in the last 6-12mo.
In list form it is a tidy little package without emotion.
In reality...the thought of your child taking their own life and what it feels like to see them in that state of mind...or repeatedly seeing blood in your baby's stool, knowing the drug that's causing it...allows them to get out of bed and move with reduced *not eliminated* joint pain and swelling.
I will remind you again...these are our treasures. This is not OK.
I am already living outside of the box...if you have been here for any length of time, you know that.
I'm not afraid of going against the grain.
The suicidal thoughts and bloody stools came on the heels of my own personal summer "adventure" of practically living at the BDC *breast diagnostic center*.
Needless to say, the stage had been adequately set...for significant life change.

from there to here...

2012-01-01T02:25:00.000-05:00

I don't think that I could fit the entire journey into one post...and it hasn't happened all at once...so I will share a little at a time, and if you're lucky...a recipe too. ;0)
For those who may be new here...
Each year around my birthday, since turning 35, I have done something to benefit my health/well being.
35 was attempting to run *fail*...raising my awareness of what I was putting into my body *didn't change much, just felt more guilt about it*
36 was an 11 day cleanse. My yearly blood work came back with low functioning thyroid...I was exhausted ALL of the time...I was having heart palpitations and still struggled with the acne I have had since hitting puberty. I was over weight and no matter what I tried, my body would not respond. So, I purchased a cleanse! :0) Detox was tough, I felt like I had the flu and could barely function for the first 3-4 days. After that, things improved...basically for 11 days, I consumed only fruits and vegetables...no coffee, sugar, grains...nada. Obviously, I lost weight...10lbs in less than 2 weeks. I felt amazing! That experience has changed everything. I felt lighter...had more energy...could feel my body responding to food and exercise in ways I had never felt before. Unfortunately, I still had babies going in and out of the hospital...so my own health and care was not a priority.
37 came and I again attempted running...success!!! I worked with a female runner and got some great tips...I had continued to lose weight, so I felt like a feather compared to when I had attempted it last. Along with the running came...a genuine effort of positive self talk. You know...just being as kind and encouraging to myself...as I am to anyone else. I found this to be HUGE in my ability to go further when running. So, things were going well...in fact, after making small changes to my diet, shedding a few more pounds, and taking some supplements...my thyroid function was within normal limits! Shortly after my birthday...I found a lump in my left breast. Having a strong family history of breast cancer, we were aggressive in finding out what might be going on.
Long story short...I spent ALL summer testing, feeling, biopsying, imaging, etc...to learn that the lump in my left breast was nothing, however...a mass in my right breast...that could not be palpated, was large and suspicious. I returned to a blog I had followed for 3yrs. It is a young woman in her 20's diagnosed with breast cancer...and after a short remission...it returned. Part of her strategy was to attack it with food.
This was intriguing to me! Obviously, I had learned a year ago, what a BIG difference food can make. I had never really taken time to look at food and disease though.
Needless to say, I was interested.
I didn't know what was going on in my body...and like most, the thought of significant change, terrified me.

a recipe :0)

2011-12-31T08:25:00.000-05:00

Shepherd's Pie
*my own personalized version*

8 large potatoes
2T Earth Balance buttery spread
1/2 C Coconut milk
sea salt to taste
1 med. onion
1-2 cloves of garlic, minced
6 oz baby bella mushrooms
2 stalks of celery, chopped
1 lg carrot, chopped
10oz vegan equivalent cream of mushroom soup
fresh ground pepper to taste
3-4 leaves of bok choy *more or less depending* separate the leaves from the stalk, cube the stalk and chop the leaves
additional 1/2 C coconut milk *or other non-dairy* or 1/2 C water

Instructions:

Peel and dice the potatoes. Place in a large saucepan with enough water to cover. Bring to a simmer, then cover and simmer until tender, about 20 min. Drain and transfer to a small mixing bowl.
Stir the Earth Balance into the potatoes until melted, then add the coconut milk and mash until fluffy. Cover and set aside until needed. Preheat oven to 400 degrees.
While the potatoes are cooking, heat a bit of water or broth in a medium skillet. add the onion, garlic, and white ends of bok choy, carrots, celery, and mushrooms. Saute until the the stalk of bok choy begins to lose it's color.
Add the chopped leaves, these cook quickly. Immediately add the mushroom soup, and liquid of your choice. *I used water and it was still creamy and YUMMY.
Stir until well mixed. Pour into a 2qt baking dish and spread the potato mixture evenly over the top.
Bake for 30-35 min or until the potatoes become golden and slightly crusty. Let stand for 5-10 min. Enjoy! :0)

Note: I am not used to writing down a recipe...if you read this and it doesn't make sense or I left something out...let me know! :) When sauteing the veggies...I add and then cut the next, so the "tougher" ones are cooking the longest. I basically used the veggies I had left in my fridge at the end of the week...so be creative. This is a dish that our kids LOVED and is such a creamy comfort food.

I will definitely share *at some point* my "Absurdly Easy Vegan Chocolate Cake" along with the quick vegan frosting! We made that for Christmas dessert and no one would have known the difference.

catch up on kids

2011-12-30T09:08:00.001-05:00

Oldest to youngest:
Caleb finished his second season of high school football...he got more play time this year which is exciting.
He also received his letter for academic honors, earned last year as a freshman. *not super cool as a jock, but makes this home schooling momma proud ;0)* It's difficult to believe that he has only 2.5 yrs until graduation. Where has the time gone???

Emma is in her final year of middle school, she too has met/meets the honor criteria each grading period. She loves to read. *which earned her a Kindle for Christmas* She is a bit taller than me now and her outward appearance reflects her beautiful soul.

Noah is growing up! This past year...in every area of his life...we have seen so much growth. He is finishing his final year of elementary and will be in middle school next year. *craziness!* He is attending a private school and has been challenged academically. We are grateful for the experiences he has had here, but look forward to transitioning him into the school system that all of the other children attend next year. He is participating in basketball for the first time and enjoying it very much. He has played soccer exclusively since he was 6, so it's been fun to see him in a new light.

Grace is half way through her first year of "real" school. ;0) She is attending half days, 5 days a week. She is in a main stream class and has a full time aid. Her current goals are potty training and social/behavioral skills. We have been pleased with her resource teacher and the creativity in bringing out the best in her. Grace recently got her hair cut, and donated it to locks of love...in honor of her friend Gwynie. She looks very grown up now and everyday that I maintain it...is an affirmation that we made the right decision. She attended her first ballet performance, just before Christmas and I was SO proud of her for keeping herself under control. We sat in nearly the back row...near the end of the row, so that we weren't disruptive and had a quick exit if needed. It was perfect! Seizures are controlled and that is awesome as well. :0)

Jacob is nearly 3! Can you believe it?!?! He is finishing up with First Steps...a service that has been in our home for the past 5 years. *that's a long time* He has been qualified for the SN pre-school that Grace attended. It is up to us how frequently he could go...but momma isn't sure she is ready to send him off yet.
He reminds us daily, how miraculous he is. :0) He is smart and funny. He absorbs the craziest information and produces it at appropriate times. He cracks us up. He can read a handful of sight words and can count to 20...but struggles to eat table food still. His largest delay is feeding, with fine motor as a close second. *we have to remind ourselves that he does have CP*

There you have it on the kiddos...I will be sharing bits of me in posts to come.
Oh...and the stellar daddy? He is recovering from working his tail off at work over the last couple of months. We are so lucky to have him take such good care of us!

2011-12-27T20:57:00.000-05:00

blogger feels so foreign to me
that...is sad
i've been thinking much about the journey lately
not the destination...not the beginning or the end
the stuff in between

reflected on this post yesterday
this part in particular..."i look at dragging myself out of bed to run differently...i am able...my body is able,
i feel fortunate.

the foods that i put into my body...i've considered this often since my cleanse last year.
we are meant to eat for the purpose of nourishing our bodies...not for personal pleasure.
i don't want to find myself in a place where i am eating in a rigid fashion, as a way to fight for my life, and have regrets about the things i have put into my body.
i want to fill my body with the things it needs now"

that was in august
after much research...listening to what i believe is true and what i feel is best for my family, i am currently 11 days animal/animal product free
and feeling a.m.a.z.i.n.g.

i look forward to sharing more about this, my "insights" and experiences with you all again :0)
along with a tasty recipe here and there
*definitely the vegan shepherds pie we enjoyed this evening YUM!*
i appreciate MUCH the sweet emails...making sure we are alive and well
our family is in the busiest season yet...and it does not appear to be slowing down anytime soon

i pray that you are all learning and growing from your own experiences...and continue to move forward!

*i will update on all of us soon ;0)

What a week!

2011-08-20T10:32:00.000-04:00

The above is Grace in the ER...from the previous post.

My last post was about seizures. Little did I know, what was yet to come.

The day after my last post...she seized again.

It was *we assume* like Sunday's event.

She immediately felt like she was falling.

She was in a panic, rigid and yelling.

*the above can look like she's being naughty if you don't know her well*

We laid her on her side and grabbed the video camera.

She had another seizure, this one included lip smacking and blinking.

Got it all on video *yay!* and afterward she was not recovering well...like before.

Full of panic and unable to sit, movements jerky and abnormal.

We called Neuro and they had us head to the office.

He didn't like what he was seeing.

She was sleeping off and on but when she was awake, her movements were "baby like", is the only way I can think to describe it. Like her body was not cooperating.

He watched our video and said that the seizure looked typical, but what we are seeing afterward is not.

He admitted her to the hospital.

Another 24 hr. EEG.

This one actually showed seizure activity, which is good...in respect to the meds she is on.

He did some thinking and wanted to rule out some things while we were there.

He couldn't help but wonder if what we are seeing is connected to her deletion.

He felt it was important to do a lumbar puncture to get spinal fluid on her.

So, she was taken off of the EEG and prepped for sedation.

They also wanted a current MRI, this meant 2 different types of sedation in one day.

No...we didn't feel great about it, but we also don't like seeing her that way.

It was presented to us that the fear is, she may have these events and one day not recover from them.

Meaning loss of her physical abilities. :0(

Reading her Kate's Kart book. *I think we have a small library of Kate's books now. ;0)*

The nurse was kind enough to do an EKG on her baby as well. ;0)

We didn't learn much while in the hospital.

MRI is unchanged...she did have seizure activity on her EEG...spinal fluid is clear.

We were released after sedation and testing the next day.

We took home a pretty ouchy and tired girl.

Not having experience with spinal taps/lumbar punctures...I didn't realize what was happening when our girl could not lift her head without vomiting...it meant she was leaking spinal fluid.

After 26 hours of no urine...we returned to the hospital for fluids.

She is always such a good sport.

After WAY too many pokes...she would still thank them afterward.

Through tears of course.

She perked up enough to return home a few hours later.

Where she proceeded to lay on her back for days.

Unable to eat and drinking only when we gave it in a syringe like medicine.

We were thankful to be home though...where she could be loved on and rest.

We prayed for healing.

We did not want to have get a blood patch.

It couldn't be done locally...it's painful and invasive.

Nothing would happen over the weekend anyway...so we kept her comfortable with codeine and zofran.

She was supposed to start Kindergarten on Monday. *can you believe it?!?*

So as a family, we asked that God would touch her.

Sunday morning...we prayed as a community for healing.

Her teacher gave us a purple sparkle pencil for her at the open house she couldn't attend.

She LOVED it.

Obviously. ;0)

By Sunday evening...I was standing in the kitchen and turned around to see Grace standing behind me!

She had not been able to sit, let alone stand or walk.

She was VERY unsteady but insisted on staying up for a bit.

Monday she was a little better...Tuesday, even more progress!

By Thursday...she was off the pain meds and ready to go to school!

We definitely count this as a miracle.

She is doing awesome!

We are changing her seizure meds...this is never an easy process.

She is doing well though...in light of everything her body and brain have been through...she is remarkable.

Now for my momma's heart to accept that her classmates won't understand all of this, or that she is so very special! Thankfully, until we get the meds worked out and the staff get to know her better...she will have a full time aid with her. We feel good about this plan. :0)

seizures

2011-08-08T08:34:00.000-04:00

I'm not sure how much of this i have shared here.
I know that i have posted this journey on her carepage site.
Grace began having "episodes" last December.
We concluded these were seizures...the week we returned from vacation.
*i'm telling you, when it rains it pours!*
They have been sporadic.
A 1 in December...a couple in January...nothing until June...and another yesterday.
They have looked slightly different each time.
Only slightly...until yesterday.
It was scary...I wasn't with her...the people with her didn't know how to respond.
We ended up in the ER...it reminded me how i much i dislike that environment.
Seeing her poked on and the flurry of activity that took place when we entered carrying our limp girl and i mentioned "my daughter has a seizure disorder". For my heart moms...it's VERY similar to my "my child has CHD" and you arrive in the ER. ;0)
We have been on seizure meds for 7 weeks...meeting the predicted therapeutic dose last week.
I'm sure that played into the shock of it all...and her recovery time was lengthened.
Noah was present and the first responder...which was also pulling on my heart, as he was scared.

She is fine...even just hours later, she is "fine".
Yet the wake of aftermath on the family around her who witness it is indescribable.
I came right home and decided that I needed more knowledge.
Like her heart...i need to understand *better* what is going on in her little brain, which makes such an impact on her delicate looking body.
Yesterday was...rough.
Today, I feel renewed. :0)

A few things you may be curious about. *ie: things I would be wondering ;0)*
*i don't wonder every moment of every day, if she is going to have one
*seizures look very different depending on the area of "activity" involved
*even with the same types of seizures...people don't necessarily present the same way
*there are "phases" the actual event of seizing...and then the recovery or "postictal" state
*Grace's actual seizures are short at this time, the postictal/recovery time is long and difficult to watch

Most of us know that Seizure activity is due to electrical activity in the brain...misfiring.
Depending on the area of the brain involved...and the amount of activity that took place, can determine if and how long the postictal phase will last.
Some people can have a seizure and not require a "recovery" period.
I have a friend who's daughter only sometimes has the postictal part.
She just never knows.
Grace has always had it afterward.
I will share what that looks like for Grace and then explain what is actually taking place in her body.
Grace's seizures last approx 30-60 seconds. *i assure you, a lifetime when you are watching*
Grace has always experienced the postictal state.
The "scary" parts have usually lasted 15-30 minutes.
Yesterday it was a full hour.
What this looks like for Grace is:
dilated pupils, complete color loss *not an ounce of pink*, blank/confused stare *at times looking terrified*, either unable to speak or slurred attempts, cold to the touch but clammy, unable to sit or hold her head up. yesterday she mixed it up a bit by being rigid initially and displaying what I can only describe as a "moro reflex", like a newborn baby has, but within 30 mintues...she went limp, which is what she usually does. Typically *for Grace* this will end with, vomiting...eyes become reactive, and the color returns...she will then "sleep it off" for a good 5-6 hours and wake up "normal".
What is taking place in her brain:
Postictal just means "after seizure". The brain in all it's wonder, is recovering from the trauma it has just experienced. Theoretically, if it took place in motor, speech, whatever...that would be the area impacted during the "recovery" time. It essentially shuts down to recover for a period. This period can last minutes, hours, even until the next day...in various degrees. Example: Grace was unable to walk for a long time yesterday...considering the changes we saw in her tone this time...that is logical.

Some people have 'triggers' or things that they know make them more susceptible to seizing.
We are watching closely for those.
We have noted that 4 times now, she has been watching a movie.
She woke up sick today.
The seizure in June came 3 days into illness.
I know that we are fortunate to have such gaps between them.
I'm beyond grateful.
Witnessing it once...is more than enough.
As i sat and watched them hook up all of the probes in the ER...all over her scarred little chest and belly, she just has had a heavy load to carry. I'm definitely still honored to carry it with her...it's just not easy.

Fibroadenoma

2011-08-03T08:02:00.000-04:00

results came in last evening...it is indeed a fibroadenoma!
one would think that in hearing this news i would have been ecstatic.
this experience...and my reaction to it has just not ceased to surprise me.
after having waited 4 days *3 days in, i was still in a good place* i had lost control of my thoughts a little.
i was playing head games most of yesterday.
when my surgeon called, she was between surgeries so she was VERY brief.
again...i needed time to process, which frustrated me.
i had previously arranged to meet someone for dinner...and was in such a funk i didn't feel like going.
thankfully, i did and it was just what i needed to get back into "life".
*thanks kimmie ;0)*
by 10pm last night i was living in a new found joy!
i feel constantly reminded to live in EVERY moment.
having "well" children...i've learned first hand to appreciate.
knowing the freedom of not being cooped up in a hospital.
now with my own personal experience...i have MUCH more empathy, for what is becoming a common diagnosis of breast cancer.
i look at dragging myself out of bed to run differently...i am able...my body is able, i feel fortunate.
the foods that i put into my body...i've considered this often since my cleanse last year.
we are meant to eat for the purpose of nourishing our bodies...not for personal pleasure.
i don't want to find myself in a place where i am eating in a rigid fashion, as a way to fight for my life, and have regrets about the things i have put into my body.
i want to fill my body with the things it needs now.

as always...good has come of this.
i was prepared to use it for His glory.
i'm grateful i haven't been asked to walk that road at this time.

i'm taking my kids camping this weekend.
without michael. *he has to work*
we've never been camping.
the kids are excited.
i am too.
the ability to camp, in 90 degree weather this weekend, with the possibility of rain...
means that i am not recovering from surgery, to remove a malignant mass.
instead i will be making memories with my children...ones we are sure to never forget!

thank you for your thoughts, prayers, and words of encouragement.
this experience has shown me how loved i am...and who is joining me on this journey called "life".

biopsy, what to expect

2011-07-30T16:28:00.000-04:00

so...here's the dealy deal
as you may recall: my mom has had breast cancer 3 times, my aunt *her younger sister* passed away from breast cancer last year

in the last 5 weeks, I have had the following:
~1 appointment with my gynecologist
~1 appointment with my surgeon
~1 appointment with cancer services
~4 mammograms
~3 ultrasounds
~2 manual breast exams
~1 MRI with contrast
~1 core, ultrasound guided biopsy *5 samples taken*

yes, that is a lot of stuff to pack in!
on top of, you know, "everyday" stuff.

the trickiest part of this for me has been...processing.
everything has happened SO quickly.
we went from everything is good...we don't see anything to...
there is something suspicious in the opposite breast...we need an ultrasound to...
biopsy two days later.

i feel the need to share a little about the biopsy
i know MANY people are finding themselves in my position and looking for some idea of what to expect

first of all...there are different types of biopsies for different types of masses
my mass is not calcified *it does not show on mammogram*
the best case scenario is that its an odd looking fibroadenoma *benign*
i had what's known as an ultra sound guided, core biopsy.
core biopsy meaning they are taking chunks of tissue, not just cells alone
*it's a large gauge needle that frankly, i did NOT watch him insert through a tiny incision*
when they are actually removing bits, it is not a smooth transaction
it sounds and feels like an old stapler *a 'ka-chunk' sound, that jars you*
i would have only felt the tugging *no pain* if they hadn't nicked my pectoral muscle *ouch!*
you do feel the prick of the injection to numb you...but it wasn't awful.
the doctor is able to get really close to the areas he wants because a tech is using an ultrasound probe
it's real time, as opposed to a stereo static biopsy where you lay on your tummy
they use a mammogram type imaging for that and gauge entrance through looking at the images
for ultrasound guided, you are positioned in the best way for the tech and doc to have access to the area
i don't know if it is standard but, i had a metal clip inserted after taking the samples
this can be used for surgery if needed, or in mammograms everyone will know that i've had a biopsy there
they covered the incision with a couple of butterflies, applied bacitracin and a pressure bandage.

now for the parts you really want to know
it's NOT excruciating
it's not comfortable, but it is definitely NOT up there with child birth *as i had read*
afterward, there is discomfort
i didn't want to lift my arm
they provided me with the cutest little ice pack that fit in my bra *it felt awesome*
i've had drainage, pain under my arm, and dull shooting pain through my breast
it's not unbearable, just uncomfortable
you can't lift heavy things...or do much with it for a couple of days
*i would listen to that bit of advice, i kinda over did it today and am paying for it*

i mean really, in the scope of things...if you consider what is to come if it's a positive result...
this was quite bearable

do not misunderstand, it is one of the most emotional events of my life
i wasn't prepared to meet with a cancer service rep prior to it
i hadn't really considered that part yet, i was most concerned with pain/disfigurement
it generally takes 2 business days to get your results
my tummy feels fine, as i wait for mine
tuesday or wednesday should be my day
my surgeon will call me *instead of the breast diagnostic doc*
we had a heart to heart on thursday before my procedure
i like her...i trust her

happy thoughts to all! :0)

2011-07-27T14:00:00.003-04:00

i have alot to "get out"
i think the easiest way is to just throw it up ;)

my husbands car died the day we returned from vacation
a family of 7 with one car and MANY appointments is...tricky
i have sold all of my gold jewelry and we took our van to the scrap yard to collect cash for another car
its not enough to purchase one that runs
still waiting for God to provide *not always patiently*
caleb has trouble running outside and being able to breathe
that's a problem when you play football
been to an allergist...several times in the past 2 weeks
still working on getting it under control
the work on our home *started in March* is STILL not done
grace was diagnosed with a seizure disorder and started on meds
she had a huge one the week before vacation, it felt like she was dying
i'm tired of seeing my children look so vulnerable and life-less
it's odd to think some parents will NEVER witness these moments
i've been a mother for 15.5 years...this week i made my first trip to the ER for stitches
i'm WAY behind on scheduling appointments for my little ones with specialists out of town
*like by 6-8 months*
we took noah off of medication he has been on and in 2.5 mo he's gained 20lb and grew 1.5 in
i have exposed my breasts to medical professionals more times than i can count at this point
i have been fondled, poked, and prodded
i have been radiated, x-rayed, and magnetized
the breast that i have a "lump" in has been cleared
the other breast...lump free...has a large, suspicious mass in it
i saw it...glaring and huge...on the MRI & ultrasound
decisions need to be made
i'm not sleeping well
i don't like knowing it's in there...unwelcome
my head is desperate to control the things i can at this point
like EVERYTHING i can
this is not good
i feel frustrated by my humanity right now...which might sound strange or annoying to you
i have been reminded, once again, to never think i know what i would do in someone else's shoes
God is faithful
i feel loved and supported

OBX~ life saving

2011-06-20T20:11:00.000-04:00

No...the Outer Banks have not "saved my life".
*though it has provided a rest and peace like none other*

We have discovered what we believe is a WELL hidden gem.
The original U.S. life saving service ...now known as the U.S. Coast Guard.
I will admit...I was drawn to this facility for another reason....it is located in Rodanthe.
Sound familiar?
Perhaps you read the book...or saw the movie "Nights in Rodanthe" by Nicholas Sparks.
I did...a couple of years ago...and read that a woman who works at this historical site...was also in the movie!
I read that they have summer events that include her sharing her experience in making this film...so I grabbed Emma and we went. :0)
Well...although *admittedly* I went for the movie...and the tie to the Island we've been on for nearly 2 weeks, I walked away with SO much more!!!
The history *all along the OBX* is SO incredibly RICH.
I mean, we all know the "typical" draws...*wild horses, Wright bros, Black Beard* but I feel like we stumbled across the BEST kept secret out here.
The couple who work this site...are passionate about the history....preserving and honoring the lives of the men who risked it all for the lives of strangers in peril. I will tell you what...after just standing on the shoreline of this ocean, I can't IMAGINE putting myself in one of those tiny boats to rescue another. These men are definitely heroes!
I took a few photos *but don't want to ruin it for anyone who hasn't seen it themselves ;0)*
These are from the watch tower:

This is the female half of the "keepers" ;0)...she happens to be the one in the movie. :0)

and this is my stunning daughter who was mistaken for being 18 years old today. :0(

If you find yourselves on the Outer Banks...looking for something off the beaten path...run to Rodanthe and enjoy. :0)

OBX beauty...

2011-06-19T14:56:00.000-04:00

As if EVERYTHING about this place isn't beautiful.
On my list of things to do while we are here...was to watch the sunset and sunrise over the ocean.
W.O.W. That did not disappoint.
I'm sure these pics won't do much for most of you...but they are something to behold in person.
Wonderful memories were made in the process of "chasing" the sun.
Emma and I went it alone for the 5 am sunrise.
Memories that neither of us will ever forget.
Thankful...and in awe of a God who creates this daily.

Our sunset...from the ferry to Ocracoke Island:

And our sunrise...speechless:

We were both surprised at how quickly it moved up into the sky and how the lighting changed.

Lovely...and fun...and worth the effort...a daily gift really. :0)

filling you in...

2011-06-17T11:57:00.000-04:00

As I look over my blog I can't BELIEVE that Easter is still showing up.
That means my blogging has been...lacking!

I had planned on posting some yummy photos of my babe today...but the island internet is sketchy.
Instead...I will fill you in on the week leading up to our departure.
I've gone back and forth on sharing it...as none of it is pressing in on me right now.
So...I feel like this is more of an informative post...we are in paradise right now...but reality awaits us.

And that "reality" looks like this:
I will preface what is to come with...we had house guests for 10 days leading up to our departure and Michael came down with a bug and was out of commission for 6 days before leaving...which put all the responsibilities on my shoulders.
Here we go...
Grace and Jacob got sick while our guests were here. The doctor that usually sees them was out of the country for 3 weeks. *she didn't return until we were on vacation* Our Pediatrician is quite honestly a formality...and refuses to treat them until the 10 day-2 week ruling out viral mark. *this is SUPER difficult for this momma of compromised babies* So...I waited, I waited 14 days before requesting that they be seen. They were seen Monday *we left town the following Friday*...the Saturday before they were seen, Grace had another "episode". Like ones she had last December & January...the ones they thought were seizures...when she had the EEG that looked "normal for her"...the EEG that brought peace to my heart knowing there was NO evidence of seizure activity.
This time was the scariest.
She was SO pale...ZERO color in her lips....unable to respond to us...her eyes were doing funny things and in the end she was EXHAUSTED....sleeping for nearly 5 hours. We recorded part of it, as we were so unsure what to do for her. First thing Monday, I called her Neurologist to let them know what we had seen...sure enough, they are 99.9% that it was a seizure. They comforted us by assuring me we had done the right thing. *laying her down on her side...letting her sleep it off* I had so many questions *that didn't have many answers* and in the end he said that being ill lowers your threshold for this type of activity. We have an appointment with them immediately following our return home.
Soooo...I get my little ones in to the Peds on Monday afternoon *explaining all of the above and the length of time this upper respiratory thing has been going on*...hauling them both in by myself..Jacob burning up with a fever having to be held CONSTANTLY, and Grace with a cough that would NOT go away. I explained that I wasn't comfortable being so far from home...for 2weeks...without a plan or treatment. He proceeded to play with Grace...inking up her arm with princess stamps and turned to me saying..."it's viral, call me if they aren't better by next week". I calmly replied "we won't be in town next week...it's been nearly 3 weeks of this, I would like them treated before leaving...that's why I took 3 hrs out of my afternoon to trek them in here alone." To which he coldly replied..."feel free to call in Friday." *the day we leave*
I literally left his office crying.
I was tired...no one was sleeping...they were whiny and clingy during the day.
I hadn't packed ONE item yet.
My husband was completely off the radar.
My kids were finishing their last week of school.
I had an IEP for Grace, Pre-K graduation, vacation shopping...I left feeling defeated and overwhelmed.
We called the very next morning and against the doctors judgement...he called in antibiotics.
*THANK GOODNESS*
We ended up calling the doctor who normally treats...after arriving in NC and she was able to call in steroids for all the hacking children with crumby lungs...and the house is quiet again. :0) *super thankful!*

If you are still reading...we have seizure activity, a sick family, packing and planning alone.
Now for the finale. ;0)
The cherry on top was on the next day.
I received a call from MY doctor. *the one concerning the suspicious lump*
This did NOT alarm me because they said that they would call regardless of the results.
The first minute of the conversation went just as I expected...until.
The nurse explained that my doctor had looked over the results and the images.
She said that the results were a reflection of the fact that my tissue is very dense and they can't see much.
They can't see the shape or size.
I've been referred to a surgeon.
They wanted me to go before vacation.
I agreed to go the week after we get home.
I have processed it now.
That's where we are.
That's what we return to.
Neurology and Oncology surgeon.
That's our reality.
Not today though...today our reality is...
blue skies, sand, sunrise and sunsets over the water, ocean waves, ghost crabs, and light houses.
For one more week at least.
And we are beyond grateful.

my view...

2011-06-15T14:42:00.000-04:00

Needed.
This time away...of renewal was...needed.
Not one thought of shunt failure...heart failure...seizure activity...not one.
Just bliss.

OBX

2011-06-13T19:37:00.000-04:00

We are on vacation.

Our first 2 *TWO* week vacation.

Ever.

We are relaxing and connecting on the outer banks of NC.

It is good.

Very good.

Enjoy a glimpse. ;0)

Grace and Jacob are NOT in love with the ocean yet.
They'll get there. :0)
Off to enjoy my family...

2011-06-03T09:10:00.000-04:00

I couldn't think of a great title.
Lots going on. *as usual*
I'll just bullet point it...it's easier. ;0)

We celebrated 16 years of marriage last week.
Grace is STILL sick, after 2.5 weeks...antibiotics, steroids, and nebs.
I will be seeing a surgeon, as my previous results aren't as clear cut as we thought.
I'm not worried. :0)
Today is the last day of school for one of my kiddos.
We are now completely focused on vacation prep.
Our family is experiencing freedom and closeness through confession and truth. It's life changing.
My head is full of lists and deep thoughts...most of the time.
Parenting is hard. Teen years being the hardest thus far.
Met a mom at the park this week...realized I need more patience for moms of typically developing 6 yr olds. Somehow the challenge of potty training late *by the age of 3* and talk of her private school not stimulating her daughter...have lost their edge to me. I'm working on it though...I realize I was once her. ;0)
My challenge: Grace *nearly 5* cannot keep her hands to herself. She must be touching or on top of someone *anyone* at all times. Oh...and potty training her, yep...that would be nice too.

That's all I've got folks!
Looking forward to time spent with my family...sprawled out on the beach. :0)

results...

2011-05-29T13:41:00.000-04:00

I am so glad that I went.
I am also thankful that my doctor is so proactive.
She felt it immediately.
*for some reason I wondered if it was all in my head*
She also sent me immediately to the hospital for an ultrasound and mammogram.
I would much rather her be overly attentive...than miss something.

I got a letter in the mail on Friday...all is well. :0)
I have had COMPLETE peace...so I would have been surprised to see anything other than that.

Thank you for thinking of me and giving notes of encouragement!!!

Our "guests" leave tomorrow morning.
It has been a life changing week for our family...as individuals and as a family.
Thankful...very thankful.

Enjoy the holiday tomorrow!

false labor?

2011-05-23T12:47:00.000-04:00

Surprise!!!
I am NOT pregnant! ;0)
However...I am experiencing something that reminds me of when I was pregnant.
I had a strange fear of going through the motions of going to the hospital...certain I was in labor, just to be told that it wasn't time yet. Especially with my third pregnancy...because of course, I had done this a couple of times...so I should KNOW if it is real or not.
Right?
Well...I'm kind of *in a strange way* feeling that way now...just not about labor.
I have been a woman for 37 years...I feel like I know my body fairly well.
In fact the more I age, the more confidence I have in that knowledge...until now.

I found a lump in my breast.

It's the size of a pea.
It doesn't hurt.
I'm not over-reacting.
I've never had anything like this before.
I feel fine about it.

Where does labor come in????
I felt hesitant to call my doctor because I don't want to waste her time or feel silly if it's nothing.
It could be a handful of "no big deal" things.
But...my mom has battled breast cancer 3 times and is on prophylactic chemo drugs.
Her sister fought breast cancer over and over again...losing her battle last year.

So...I called.
They wanted to work me in TODAY.
I feel good about waiting until tomorrow.
They said it will most likely look like another mammogram *as I established a baseline at 30* and an ultrasound. I LOVE the sound of non-invasive thoughts.
It does feel daunting...as we are ever-so-close to leaving for our AMAZING vacation.
It's all good though.
I am thanking God for our insurance, which takes away the financial strain that this could have on us without it.
I'm grateful to live in a country where same day services are available.
I am MOST grateful for a peace and rest in my Jesus...that WHATEVER comes my way...I'm held. :0)

This has been an interesting weekend.
We have a revival summit at our church right now...it will last for 8 days.
We are housing two of the team members...18 & 20 year old boys.
We are honored to *rearrange ;0)* open our home to them and come along side of them...as they have been living on the road for 10 months. It's funny because they claim that we inspire them...and yet we feel the same about these incredible young men.

Our life is moving at breakneck speed right now.
Preparing for a lengthy, BIG vacation...sending Caleb to an out of state camp *the day after we check out of our vacation home*...Grace is battling fevers/knee pain and swelling...and Jacob is struggling with migraine headaches due to the weather. God is so faithful though...none of us are feeling the strain of it...and when we take time to keep our focus on Him...all of these things fade away.
Grateful is the only word that comes to mind.
I feel so grateful.

*for the record...I did go to the hospital in false labor with my first...AND my third pregnancy. ;0)

Easter

2011-04-27T07:53:00.000-04:00

Not kidding...blogger drives me NUTS at times!!!!
I have been working on this post since Sunday evening...I could NOT manipulate the pics.
They still aren't what I was going for.
Since I'm comparing some old with some new...I needed that to happen.
ANYWAY...here they are. :0)

carefully checking the color

Hey...at least he was with the family ;0)

Teenagers!

This would be Jacob LAST year

look at that hair! *this is the day before Easter*

Baker kiddos 2010

2011
What a difference a year makes!

We had a great Easter.
The older 3 know that eggs have nothing to do with why we celebrate.
We look forward to sharing that with the "babies" as they grow.

IEP and TOP soccer

2011-04-21T15:52:00.000-04:00

We haven't had our IEP yet.

Still in the anticipation mode.

*super fun*

This has been quite a process for us.

We have a lot to think about with Grace.

Some of which is...she is sick frequently and misses a good chunk of school.

This is a big deal once you get into "real" school.

Also...your standard heart disease.

Your run of the mill...speech delay.

We have the...unexplained pain/swelling in her joints/feet...which comes with difficulty breathing and extreme fatigue. This one is nice because NO ONE knows why still...so we are having a hard time writing out what that will look like. Of course they want the children to be mobile...and when she's at her worst, she can't get up off the floor or walk.

Sprinkle in a little...unawareness of: danger, others, at times self...and my goodness it gets fun! ;0)

SO...I have been in search of an educational advocate to take with me.

Nothing...I have e-mailed people, called people...nothing.

Until...yesterday!

I had an advocate respond immediately AND say that she is available on my IEP date!!!

We spoke on the phone today and we have MUCH in common.

Her daughter has FVS *fetal valproate syndrome* as does Grace.

*this means their birth moms were on Depakote during the pregnancy*

She adopted both of her children out of foster care...as did we.

She is a nurse...as am I.

I feel so blessed by her already!

I have a meeting next week at her current school to get the results of her re-eval.

This will include reports from PT, OT, ST, teacher, and school psychologist.

I'm pretty sure my tummy will hurt until after May 27th.

I feel like I've been given gifts though.

I'm grateful!

OK...on the the good stuff!

Grace participated in a special needs soccer program last summer...called TOP soccer.

I use the term "participated" loosely.

She mostly screamed and threw herself on the ground.

I don't know why.

She also missed frequently because of her knee issues.

Anyway! Our city hosted a collegiate soccer game *at our new stadium downtown* last night.

Well...the TOP soccer team was invited to come play a short game on the field...during half time.

Unfortunately, the temp. was about 40 degrees. :0(

We would have backed out but, the coach is phenomenal.

Really.

We also knew that this was a good way to bring awareness to this program SO...

we bundled up and headed out!

Soccer is ALL Grace talked about ALL day.

Her siblings would take a small ball and have her practice kicking it between their legs.

Which explains why she kept doing that on the field! :0)

Once she understood that everyone was yelling "in the net Gracie!"...she started making goals!

She made 5 total and I have to say...I was pretty proud of our girl.

All bundled...waiting.

Gracie's fan club. ;0)

That's my girl...in the scarf and ear muffs. :0)

Getting a 5 from another parent.

This is my FAVORITE picture. The helpers were 16-18 year old girls...they were instructed to hold hands in groups of three, and walk off the field. Just the girls...the kiddos were supposed to walk off with their parents. It was a little chaotic after the game...so I was trying to get through the people to get over to Grace...yeah, she thought she was a "big" girl...she headed right over to a couple of girls and put her hands up. They LOVED it. They kept saying "she's SO cute!"
Yep...I ate it up. ;0)

My, my, my, how far she has come.

Wonders of a warm day...

2011-04-20T08:48:00.002-04:00

About a week ago...it was a lovely 80 degrees around these parts. :0)
It was a much needed break from the cold...the cousins love our trampoline.

We made the most of it!

Her big brother Noah assisted in "fixing" her headband...cute.

A rare photo of a teen and his mom. ;0)

Playing in our borrowed house.

She LOVES it.

Not super sure about the grass.

Playing takes a toll. This is a common scene at our house.

If she sits still...she falls asleep. :0) It's cute.

Nice...

2011-04-17T14:37:00.000-04:00

Today is my birthday.

I'm no longer in my 20's...not even my early 30's. *gasp!*

But it's been nice.

A nice birthday weekend.

And today...notices from Facebook are popping up every 30 sec.

Hundreds of my "closest" friends are wishing me a happy birthday.

It's nice. :0)

Know what else is nice?

Meeting fellow bloggers/moms that I have "met" online but not in the flesh!

Let me explain.

I took a *short* road trip with a friend yesterday.

It was a little over 2 hours away...a conference for children who are blind or have low vision.

I was sitting, waiting for the first speaker when I heard my name.

I looked over and it was a couple that I had met at our private therapy center.

We hadn't connected since Christmas so it was nice to reconnect.

I sat down and thought...how funny to be far from home and run into them here.

As I headed out for the first break...again, I heard my name.

Only this time I didn't recognize anyone.

A woman approached and told me that she knew me from Victoria's blog.

*I was slightly thrown at first*

As I tried to figure it all out...I felt like she was regretting stopping me! :0)

I asked her please give me a minute to figure it out and sure enough...it came to me.

She is a momma of a CHARGE baby and we "know" several people in the same blog circle.

I was SO excited to meet her and super thankful that she had given me time to process it all!

I loved getting to meet her hubby and chat about home nursing. ;0)

Seriously...I LOVE the opportunity to physically touch the people that we pray for and love on from afar...an honor, really.

Without further delay...meet Sarah...mommy to Gannon...CHARGE champion.

Just for fun...here is the list of online/bloggy friends that I have had the privilege of squeezing!

I've already contacted Candace...hoping to meet her while on vacation. *just a couple of months!*

I'm considering having Nate take our photos while in the OBX. *he has already been kind enough to share the nearest Children's Hospital with us.

There are so many more that I hope to add to this list! :0)

Three years ago, when I started this blog, it was to journal the adoption of Grace. I NEVER would have expected the love and support that I have found here.

I am grateful.

It is beyond...nice.

renovating

2011-04-10T18:37:00.002-04:00

We Baker's have been busy! We have been giving our home some TLC. My before picture of the bath does not do it justice.We scraped the popcorn off the ceiling *which we have now done in the entire house*, replaced the vanity/counter/fixtures/mirror, had ceramic tile laid, and painted the light fixtures.

I LOVE it.

It's tough...I find myself wanting to sit in the bathroom all of the time. ;0)

We have actually done some major stuff...all OVER the house, it's just that the bathroom is where it all started, and the only one I took *a* before and after picture of. :0)

Today was beautiful around these parts.

The kiddos and I were outside for most of the day.

Hoping to post some pics from that soon.

We are heading to Chicago for appointments with Grace and Jacob in a couple of days.

Better go get organized!

WATER DAY!

2011-03-22T07:50:00.004-04:00

DID YOU KNOW?
That... 1/3 of all drinking wells built in the
last 20 years are broken.

Or that... Over 4,000 children die every day
from lack of clean drinking water.

What about...The well mechanics business in
North India trains and equips men
and women to repair their region’s
water wells.

Here's the deal...If we raise $10,000, we will help
mechanics fix hundreds of wells for
years to come, turning water back on
for 300 people each month.

Having been to Africa...and seeing with my own eyes...the devastation that comes from simply NOT having clean water...this just makes sense! If you have been around here long, you know that I have supported Water For Christmas that past two years...a program that digs wells. Now we have the opportunity to repair those wells and provide opportunities for other to be trained to do so. HOW EXCITING IS THAT?

Exciting I know...now there is an opportunity to double the giving...so go here check it out...and GIVE. :0)

remembering...

2011-03-09T19:04:00.003-05:00

Again, I surprise myself.

Over the past week...my thoughts have wandered back to March 2009.

We are approaching the anniversary of open heart surgery.

It's mind boggling really.

We spent SO much time with her in hospitals...leading up to that day.

I am NOT one to remember dates...I promise.

I think that's why it surprises me how my body and mind feel leading up to...

March 12

I think it's a day that is forever etched in my mind and soul.

Thankful...that's how I feel.

Thankful she's here...and her heart is doing awesome! :0)

If you want to remember that morning with me...read here.

We have fabulous plans on Saturday...to celebrate her anniversary!

Can't wait to write that post. :0)

where it's at...

2011-02-28T08:03:00.003-05:00

I don't know how many of you go to church on Sunday mornings.
We do.
That part is neither here nor there.
The point is...we are nearly ALWAYS right on time...or two minutes late.
Sunday mornings are different somehow.
M-F I can ready 4 of the 5 for school by 8am...alone.
Yet Sunday...with Michael's help...I can't seem to get us all out the door by 9:45am.
It's mind boggling.
Needless to say, when I'm in my bathroom getting ready...and 4-5 beings are gathering there...it can be frustrating.
However...yesterday as I was getting ready, and they trickled in...one at a time into my *tiny, only holds a sink, toilet, and stand up shower* bathroom...my perspective was different.
As I encouraged a few to exit...I quickly realized they relocated to my bed.
Children...some still small...one half way there...and two as big as adults...congregate where I am.
Yesterday...it became so clear to me, they just want to be where mom is.
That's me!
What an honor.
I know it won't last.
One day *very soon for the older ones* my room...my tiny bathroom, will not be their first choice.
It made me remember my own moments...of just wanting to be close.
So many things I questioned after my dad remarried.
I figured that I wanted to watch her get ready...or do her make-up because she was new to me.
Nope...it's just what kids do.
They want to be close to us.
PROMISE...I get touched out...at times, when the full grown children are sprawled out on my lap *like they are still tiny*...it can feel like a bit much. Throw in the "please rub my head" or "can you scratch my back?"...and well, honored isn't always the way I feel. ;0)
I should though.
Those moments are few and far between now.
I'm grateful for the family I have been gifted.
Praying I get this perspective more often.

ALIVE! I'm alive...

2011-02-25T17:02:00.006-05:00

Shew...to say that our life is, well...nutty, would be an UNDERSTATEMENT.
I'm fairly certain that even some of my closest friends don't "get it".
It's OK though.
It's crazy...full...not about us...and REALLY good.
Wouldn't have it any other way.
This is basically going to be a post in pics. :0)
I'll apologize upfront for the ones taken with my phone.

So...there has been lots of this:

which means lots of this:

and you can't have lots of those...without a little of this:This was Grace's first time having Hot Chocolate.
She loved it. :0)
Just another reminder of just how far we have come.
When school is cancelled...you come up with things to do.

I'm pretty sure she is being Cinderella and Jacob is one of the mice. ;0)

Practicing the letters of our name.She does a great job of erasing and doing it all again!

Unfortunately...we have also had plenty of this:

sickness :0(

Our entire family took a hit a few weeks ago...and then Jacob went for round two.

It's all respiratory. YUCK!

Fever of 103 and extreme fatigue.

He basically slept for nearly a week...until a doc listened to momma and gave him an antibiotic.

I love that last pic.

Nobody wants to feel crumby alone.

We basically passed him around...everyone taking their turn with him.

However...when he is NOT sick...you can find him doing this:

A therapist is letting him borrow this jumper.

He loves it.

Feels really big on it. :0)

You will also finding him WALKING...everywhere.

It still catches us off guard to see him come walking into a room.

SUPER CUTE.

Also when he's not sick...you see LOTS of these:Gotta love Valentines Day in Pre-school:

She was wearing a 30day holter.

No results on that yet.

Throw in an EEG:

and there you have two weeks in the lives of...well, I guess just Grace and Jacob. :0)

Thanks for checking in...still here, just living this crazy life...

2011-02-10T21:47:00.003-05:00

i'm still processing all of the most recent losses

also processing the hurts/loss of others and self

got up and read 5 chapters of Job this morning

needed perspective

got it

i heard a song on my way home from the hospital tonight

i've heard it before

it speaks to me

Beautiful

By Mercy Me

*only bits of the lyrics*

You're beautiful

You are made for so much more than all of this

You're beautiful

You are treasured, You are sacred, You are His

You're beautiful

Before you ever took a breath

Long before the world began

Of all the wonders He possessed

There was one more precious

Of all the earth and skys above

You're the one He madly loves

Enough to die

in awe of a God who loves me enough to give up his life for me

of a God who makes me beautiful

knowing how unlovely i am...apart from Him

if you see anything good in me...i pray that you see only Him

treasured and sacred...only by His grace

thankful

final...

2011-02-01T13:22:00.002-05:00

Death is so...final.

I know that sounds obvious and...simple.

But it's true.

There is no negotiating.
No reasoning with it.
It just IS.
And then...you move.
You move forward or backward...and you find a new normal.

Two weeks ago...a 15 year old girl, took her life.
Her family owns a dairy farm.
She went to milk the cows...and hung herself.
She is my second cousin.
She did not leave a note.
We have NO idea what was going on inside of her head.
On the outside...everything looked, perfect.
She and my son Caleb...share the exact same birthday.
I have struggled with her death.
I have had many conversations with my children this week.
My heart is bleeding for her family.
I just can't wrap my mind around it fully.

Late Sunday night...Josiah lost his battle with aplastic anemia.
He was surrounded by family and medical staff...that loved him.
People who invested much...gave all they had...to heal his broken body.
They accepted defeat.
In street clothes...the stem cell doctors and nurses...FILLED this 9yr olds room.
Tears were shed by many.
He took only 3 breaths after being extubated...and left with a smile on his face.
Thank you for your loving words and prayers...I forwarded each one.

The finality of it all.
It's over.
For most of us...it's over.
I will grieve...I will hurt for these families...I will attend viewings and funerals.
I will love on people and sit in their pain...and then my life will go on.
Their lives...are forever changed.
I don't know what that looks like.
I don't know how they will get out of bed every day.
I don't know how they will breathe and shower...let alone earn an income.
The gaping holes that have been left.
I know that many of you have experienced this pain and suffering.
I'm sorry.
I'm so very sorry for your loss.
You are survivors...you are my heroes.

heartache...

2011-01-15T17:36:00.003-05:00

I'm not sure how to begin this post...I have no idea how it will end.
What I do know is...this post appropriately follows my most recent posts.

I don't know how to delicately share what is pressing SO firmly on my heart tonight.

Do you realize that this life is about more than you?
More than your comfort and happiness.
More than your hopes and dreams.
More than your career or retirement plan.
More than your desire to avoid pain and suffering.

Do you get it?

Do you really get it?

Honestly...most days, I don't.
I am humbled though...that He patiently waits for me to peek outside myself...and enter into the suffering of others. I firmly believe that I AM NOT SPECIAL. He has not invited only me. I know...from my own personal experience...if you brush the prompts aside, you miss the opportunity. For years, I am ashamed to say, this knowledge did not bother me. No gain...but no loss either...or so I thought.
I will share with you...the boy I have had burned on my heart is named...Josiah.
He is back in ICU.
Every system in his once beautiful...perfect 9yr old body...is failing him.
He has only a slight resemblance of the boy he was 6 short months ago.
When I learned earlier this week...that he was back in ICU...options dwindling...I was prompted to go.
This sounded CRAZY to me.
This family has lost their wife...and mother.
They are now losing a son...and brother.
I am a stranger. *honestly, meeting once does not constitute "friend" right?*
What could I offer them? *other than hugs...cause I am pretty good at that ;0)*
I am not an eloquent speaker. *Alison, Victoria, Tina, and Krista...you KNOW this to be true*
Words fail me...in the times I feel like I need them most.
It was just not logical.
So of course...I went.
What do we know of "logical" I ask you?
*I honestly wrote an e-mail to Marissa asking her if it was totally inappropriate to go...in her opinion. I trashed it.*
I took my Walgreens friend...Chris. *words do not fail her...I love that*
I won't give much detail about our visit...but there is a love...an unspoken appreciation for people who share in your suffering...whatever that looks like.
We were there for over 4 hours.
We saw images we will not soon forget.
We were treated like family.
We were humbled and honored to be welcomed into such a sacred and devastating chapter of their lives...with open arms.
We shared our stories with one another.
We laughed some...cried lots...prayed...and encouraged.
They kept saying what a blessing we were...if they only knew.

We didn't get home until 2am. We drove as many hours to see them...as we actually spent with them. My baby's shunt malfunctioned while I was gone. Chris's baby is battling an infection. Both Chris and I have 5 children...it WAS NOT EASY to go. It almost never is. It's not always pretty...most of the time, it costs you more than you think you're willing to give.

I carry an ache in my heart today...that has nothing to do with me, or anyone in my home.

Clinically...this boy is dying.
He had a risky surgical procedure today...in hopes of saving his life.
God can do anything...I've decided that it is none of my business why He allows the things He does.

If you would like to send a note of encouragement to Josiah or this family, feel free to leave it in the comments or send it to my e-mail on the side bar. For those of us who have left it all on the battlefield for our children...you know how much this would mean to them. I will forward them on...directly.

Our prayer is: If it's His desire to heal Josiah...thank you. If not...we beg for him to go swiftly.

Update:

2011-01-08T09:17:00.003-05:00

I will do a "real" post soon...I think. ;0)
I mean...I want to...I just need to find the time!

I wanted to update on my previous post...and share the contents of our care package.

He is improved in some areas and deteriorating in others.
He is extubated and was moved from ICU earlier this week.
He is still making new cells on his own.
He has also had a fever since the day he left ICU...they can't find the source.
His body is still failing.
I learned that the total time his mother fought for her life was...2.5yrs.
Although they are still hopeful...this is all taking it's toll on him.
He is tired, discouraged, and in much pain.
Thank you for remembering them...

As for the care package...basically, we attempted to put ourselves in their place:
*cash
*gas card
*"A Different Dream for My Child" book
*toiletries for mom
*small note book and pens
*snacks...protein and chocolate
*notes of encouragement
*a movie
*several small lego projects
*puzzle
*the start of a rubber band ball...and plenty to add to it. *thanks Chris!*
*chap stick and fun little "special" small things like that

Those are the things I can think of off the top of my head.
Of course, we delivered them in bags that she could use to carry her life around the hospital.
*the Vera Bradley bag was MUCH appreciated. They are sturdy and collapsible*

Thank you all again!

Invited in...

2010-12-22T06:48:00.002-05:00

A while back, a man came and spoke at our church.
In his message, he encouraged us to ask God to place us in situations...that on our own, we could not force our way into. I interpreted that to mean...God use me. I can't even imagine what that might look like, only You know where and what that place or need is...but use me.

I've wanted to write this post for some time now.
I have struggled with how to begin.
How to get it all out...without losing you...or having it sound disjointed.
I feel like now is the time...I pray this comes across clearly.

Two years ago...A woman in our church, *about my age* shared that she lost her sister-in-law to a rare form of Anemia. Actually, she had shared her with us prior to that...asking for prayer. This form of Anemia has a 90% success rate with treatment, when a family member is a match for a bone marrow transplant. Her battle was short and swift...there were no matches. She left behind, a husband and 4 children *two of which were quite young*. Obviously, it was a huge loss for the family...I remember feeling heavy hearted for this now...single father and his children.
One year ago, God gifted him with a new wife. She had no children of her own...I'm sure this was a time of adjustment for all of them. It was quickly overshadowed however, when their youngest son who had battled continuous illness...was diagnosed with the same form of Anemia...that took his young mother's life.
They immediately began treatment...hopeful that because he is so young, he will have a better chance. Treatment involved Chemotherapy...and then transfusions of packed cells and stem cells to stimulate his body to produce his own growth. They even used products from unborn babies...hoping it would be more "compatible" with what his body was needing.
Initially, this treatment was started locally. He spent several months in and out of our local hospital...until it was determined that he needed to be at a children's hospital over 2 hours from their home. Without hesitation...his new mom packed her bags and has yet to leave his side. I remember getting this update from his aunt...and thinking WOW. She is such a new wife and mother...far from home and her support system. I knew that I wanted to encourage her in some way...without freaking her out. ;0) *Victoria knows...once led, I HAVE to follow through*
I ended up sharing this situation with a dear friend of mine...immediately she said "I'm in"...what are we doing? We decided to put together a care package...of all the things we found priceless during hospital stays...we opened it up to whoever wanted to contribute and then...I had the honor of delivering it.
I remember feeling...slightly anxious. The woman I was about to meet...had an accent and was slightly difficult to understand...would there be cultural barriers? Would she think I'm crazy for doing this? Would it be awkward? So many foolish thoughts running through my mind.
Let me tell you about this woman...she is his mother.
Her heart...is tethered to his.
When I entered to hospital lobby...we made eye contact and...she ran to me.
Squeezing me tight.
*I was fighting tears!*
I did what all of us "fighter" mothers do...I asked, what kind of day is today?
She proceeded to share...just like a seasoned hospital momma...it's a bad one.
He had a fever...couldn't take his breakfast shake...was uncomfortable.
She shared how she cares for him...he likes it when I do this or that...but today it's not working.
My heart was so touched by this woman.
She oozed peace and warmth...
I didn't meet her son...he wasn't up for it.
Before I left...I squeezed her one last time and whispered in her ear...
"you are not forgotten"
We both cried...she thanked me and I left.

I had been invited into that place...and I knew it.
Loving on her...was not something I could have forced my way into.
I felt privileged and changed by it.

Sunday evening...I had the honor of meeting her husband.
Again...tears were shared...squeezes exchanged.
He attempted to put into words what kindness from a "stranger" meant to his family.
I quickly shared...the feelings are very mutual.

Friends...his son's life is hanging in the balance.
Just days after his body began to generate new cells for it's self.
He took a drastic turn for the worse Sunday night.
He has liver and kidney damage from the treatment...his body is being attacked by a bacteria.
His bowels are severely inflamed.
He is in ICU...on a vent...fighting.

His battle has been long and tiring.
His family is exhausted.

I am praying for God's will in this situation...and comfort for hearts who yearn for him to wake up and be a "typical" 8 year old boy.
It is almost too much.
Until I am reminded...
Psalm 42:5
Why, my soul, are you downcast? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God.

Little giggles...

2010-12-12T08:25:00.002-05:00

I need not tell you all again...I LOVE being a mom.
There are so many dynamics...you are NEVER bored.

I have struggled over having such an age gap between the "older" kids and the "babies".
*yes, they are still referred to as the babies around here...even Gracie!*
I can honestly say...having two little ones again...makes me a better parent for all of them.
It gives me perspective...nearly daily.
I get to be reminded *constantly* how quickly they grow up.
I see the areas I was a little too firm in and the areas I have plenty of time to teach into.
I assure you, it doesn't just benefit the little ones though.
*contrary to the talk around the house ;0)*
Example:
I rarely take out the two babes on my own.
If I'm honest...I can count on one hand the number of times I have done that.
*Side note* I marvel at my younger self who cared for 3 young children under the age of 4. My husband worked 3 jobs...I ran all of my errands, made all of my social calls...with ALL of them. I have NO idea how I had the energy or patience for that! The crazy thing is...because it was always that way...the kids were great at it.
*back to the story!*
I haven't often been in a position where I have to take the younger ones.
Life is different now.
My older kids are in school all day and this time of year, my husband works 60+ hours a week.
SO...recently, I have had to take out the babies...to run errands.
Grace and Jacob were in the captain seats in the van...chatting back and forth.
As I was driving...singing to the Christmas music...I became very aware of the sounds in the seats behind me.
They were babbling with eachother...giggling...squealing with laughter.
Cracking each other up!
When I looked in the rear view mirror...they were both just little bundles in their hats, winter coats and gloves...barely able to move in their car seats...making every effort to see each other...with the happiest little faces.
Life was good.
For them...it is simply good.
Most of the time...I am only required to sit back and notice the goodness.

As much as I enjoyed being in that moment with them...I suddenly realized...I don't know if I took time to enjoy the older three like that.
My heart hurt a little.
I was young...figuring it out...insecure in my parenting...did I miss their little giggles?
A friend shared a book with me...a few years ago by Karen Kingsbury.

Here is a poem from that book Let Me Hold You Longer.

Long ago you came to me,
a miracle of firsts,
First smiles and teeth and baby steps,
a sunbeam on the burst.
But one day you will move away
and leave to me your past
And I will be left thinking of
a lifetime of your lasts…
The last time that I held a bottle
to your baby lips
The last time that I lifted you
and held you on my hip.
The last night when you woke up crying,
needing to be walked,
When last you crawled up with your blanket,
wanting to be rocked.
The last time when you ran to me,
still small enough to hold.
The last time that you said you’d marry
me when you grew old.
Precious, simple moments and
bright flashes from your past-
Would I have held on longer if
I’d known they were your last?
Our last adventure to the park,
your final midday nap,
The last time when you wore your favorite
faded baseball cap.
Your last few hours of kindergarten,
those last few days of first grade,
Your last at bat in Little League,
last colored picture made.
I never said good-bye to all
your yesterdays long passed.
So what about tomorrow-
will I recognize your lasts?
The last time that you catch a frog
in that old backyard pond.
The last time that you run barefoot
across our fresh-cut lawn.
Silly, scattered images
will represent your past.
I keep on taking pictures,
never quite sure of your lasts…
The last time that I comb your hair
or stop a pillow fight.
The last time that I pray with you
and tuck you in at night.
The last time when we cuddle
with a book, just me and you
The last time you jump in our bed
and sleep between us two.
The last piano lesson,
last vacation to the lake.
Your last few weeks of middle school,
last soccer goal you make.
I look ahead and dream of days
that haven’t come to pass.
But as I do, I sometimes miss
today’s sweet, precious lasts…
The last time that I help you with
a math or spelling test.
The last time when I shout that yes,
your room is still a mess.
The last time that you need me for
a ride from here to there.
The last time that you spend the night
with your old tattered bear.
My life keeps moving faster,
stealing precious days that pass,
I want to hold on longer-
want to recognize your lasts…
The last time that you need my help
with details of a dance.
The last time that you ask me for
advice about romance.
The last time that you talk to me
about your hopes and dreams.
The last time that you wear a jersey
for your high school team.
I’ve watched you grow and barely noticed
seasons as they pass.
If I could freeze the hands of time,
I’d hold on to your lasts.
For come some bright fall morning,
you’ll be going far away.
College life will beckon
in a brilliant sort of way.
One last hug, one last good-bye,
one quick and hurried kiss.
One last time to understand
just how much you’ll be missed.
I’ll watch you leave and think how fast
our time together passed.
Let me hold on longer, God,
to every precious last.

I found this book only depressing when first introduced...I appreciate it now.
As Grace hangs on my legs when I'm working in the kitchen...I KNOW it won't last forever.
When Jacob howls for his bottle...and prefers I hold it...I KNOW it could be his last.
When Emma asks for my help preparing for semi-formal...I KNOW it's a privilege to be invited in.
When Caleb shares that he's in a "dark place" and shares that darkness with me...I KNOW what an honor it is to be trusted in that place.
And when Noah talks incessantly...I KNOW one day soon, he will share only a fraction of those thoughts with me.

Help me to slow down...take it all in...and appreciate where each one is.

Perfection...

2010-11-15T22:04:00.003-05:00

There is a song...that I can relate to in many ways...it has a line:
"perfection is my enemy"
Is that true or what?
I mean honestly.
I heard a prayer tonight...the woman said something like:
"remind us that we don't have to be perfect...as we are perfectly loved by you"
There is such freedom in knowing...believing that.
I find myself struggling with perfection nearly daily.
I have such a standard for myself that I will clearly never meet.
In truth...I don't want to be perfect...just really close to it. ;0)

I have an amazing opportunity.
We are sharing our home and table...with a family from Noah's school...Thanksgiving day.
A family we hardly know...is spending Thanksgiving day with us.
I'm honored...and fighting the urge to make it...perfect.
You know...I don't have amazing place settings.
Don't have beautiful serving dishes.
I don't own nice linens.
I don't have one table...big enough for all of us.
We have a modest home. Very...modest.

Here's the thing...they aren't coming to have dinner with my place settings.
Nope.
They are not coming out of curiosity...to see our AMAZING home.
Not even.
They are not coming to be wowed by my...perfection.
Thank goodness!
They are coming to share a meal.
They are coming...because we invited them.
They are coming because they don't have great family.
They are coming...because we invited them.
They are coming to eat, relax, and enjoy community.
Again...they are coming...because we invited them.

How freeing.
Seriously...we are all so excited.
They will bring the foods that they can't imagine not having on Thanksgiving...and I will prepare those that are our "staples". We will share traditions...and things that we are thankful for. We will enjoy each others company. I have a feeling...no one will care about the place settings.

Fear of rejection nearly prevented me from extending the invitation.
What a great loss that would be...for all of us.

Be thankful...be brave...be imperfect.

life unscripted...

2010-11-10T13:21:00.004-05:00

I mean honestly...you can't make this kind of stuff up!
*who would want to?*
Let me share our adventure with you...
*WARNING:this post could make you gag*
I received a phone call from Grace's pre-school teacher this morning.
*about 45 minutes before school got out*
She explained that Grace had just "spit up".
*she described the "spit up" to me...as phlegm like*
I proceeded to ask if she was acting different...or if she had a fever.
No, she was acting fine and they would have the nurse take her temp.
If anything was off...they were to call me and I would come get her.
*she rides the bus to and from school*
I was watching the clock...I noted the time that school got out...no call yet.
Just moments later...the phone rings.
*I just miss the call...Jacob was having therapy*
I wait impatiently to see who it was and if they left a message.
Sure enough...it's Grace's teacher!
She left a message reporting: Grace did not have a fever..HOWEVER, she repeatedly "lost her color"...turning white as a ghost and falling down.
!!!!WHAT????!!!!
As she could not walk the steps of the bus alone...they carefully got her into her seat...but wanted me to be aware of what the departure/previous 45 minutes had looked like.
*can you say...we have some things to go over with our teachers????*
I love them...don't get me wrong.
Anyway...so minutes later...I hear the bus.
They are EARLY.
I go running down the drive and as soon as I lay eyes on my girl...I know why they made her the first drop off.
OH MY GOODNESS...I have never seen her SO pale.
Snow...would be a good comparison.
Her lips were as white as her skin.
*the darn bus aid was determined to put her backpack on her!!! help me*
I climbed on the bus and snatched my girl...the bus driver totally got what was going on and I am certain she will give some teaching to the aid. Seriously.
She could not walk...she was so weak and white.
I was asking if anything hurt...as she was just kind of moaning.
She just said over and over again...her knees.
*darn those knees!*
So I sat her in her little chair and looked her over.
I couldn't figure it out...but like a good momma...I hooked her up to our oximeter. ;0)
Sats looked good...heart rate was fine for her.
*bouncing ALL over...but that's typical*
As I sat there "assessing" the situation...she was doing her heavy sighing.
*which happens when her knees are "doing their thing". I know it sounds crazy*
I decided that *like any heart mom* I had to feel better by letting her Cardiologist know what was up.
It is RARE that Grace has low energy.
Rare like...never.
So...I tell the nurse all that has transpired.
I hang up...and she projectile vomits...right into the lap of...Jacob.
*oh yummy*
I'm slightly in shock...and go running for a towel.
I return to see my baby putting his vomit covered hands into his MOUTH.
*help me!!!*
AH...I can't figure out what to do first!!!!
I strip him down...wipe him off and stick him in the jumper thing to keep him confined.
I strip Grace and carry her to the tub.
She is soaking...the clothes are in the wash...her little chair, the oximeter, carpet and coat...are covered in vomit.
*nice*
I leave her sit in the tub...*no water* and begin washing up the carpet.
*her little chair will go in the tub when she gets out*
I get the carpet cleaned and new clothes picked out for her.
As I walk by Jacob...I smell that he has a gift for me in his diaper.
I tell him that he will have to wait his turn...he happily jumps and squeals.
I get Grace out and dressed...I lift Jacob out and go to change his diaper when...
I notice poo on his foot.
what?
No wait, it's on his calf and thigh too.
OH NO!
I look over at the jumper and uh, huh...he has somehow pooed out and proceeded to JUMP in it.
NOOOOOOOOO
*this happens to "unseasoned" moms...NOT me!* joking of course
So yes, I have to put him in the tub...get him dressed and placed in his crib...again, to keep him confined as I clean poo out of my carpet as well!
I'm EXHAUSTED.
As I fed Jacob his bottle...Grace snuggled beside me on the sofa.
She looked over and said "I cold momma. I tired."
I said, "You're tired Gracie?"
*she is NEVER tired.
She said.."Yes, I sleepy momma."
Here is what she looks like now:
Cozy...on the sofa...watching Max and Ruby *the parentless wonders*
And yes...she is still on the oximeter...because it makes me feel better.For those *like me* who want to see the numbers. ;0)
She's good.
HR bounces between 70 and 115 bpm.

Life...this is it.
Her color is good...as long as she's sitting/laying.
Perhaps it's as uncomplicated as a stomach bug...we will see.

UPDATE:
Cardiology just called...he is slightly concerned she may be having episodes of SVT again. *She has been off her meds since August* He said that it can cause all those symptoms including vomiting. :0( He basically said to watch her...unfortunately, the only test they have is the 30 day monitor...which did not go well for her last time. OK the other reason I called him right away is because, Saturday she had a strange, similar experience. Downer.

UPDATE...to the UPDATE: ;0)
Her pediatrician...wants to rule out seizure activity. EEG on Friday.

neglected...

2010-11-05T08:35:00.004-04:00

I fear my blog has been neglected!
Let's face it...our life is just nutty.
Perhaps as the weather is changing...I will find time to blog.
Or...perhaps not.
I can tell you that in just a short couple of weeks:
Emma got glasses
Grace had her GT stoma surgically closed
We've had appointments in Indy and Chicago
Found costumes for 5 children *I NEVER plan ahead!*
Trick or Treated without one of my children...for the first time *he went with friends*
Last but not least...we have entered a new phase with Grace and behaviors that has us boggled.
Yeah, that sweet face.
It's still sweet and she is still super loving.
However...if you have a thought contrary to hers..LOOK OUT!
Her imaginary friends *who reside in her hands* now hang out FULL TIME.
They used to only visit when she was bored...but that was SO last year.
Currently...they are with us...90% of the time.
PLEASE don't interrupt her when they are "playing"...we get VERY ugly.
She nearly got yanked out of swim club last week...because of her attitude.
I knew it was headed south when I realized that she had "Colie" *rt hand* playing in the water.
This little guy...she DOES love him...I'm sureHowever...we frequently find her being VERY not nice. :0(
"traditional" parenting techniques...DO NOT WORK.
We are pretty much at a loss.
If we didn't have 3 older children...we may feel like total failures as parents.
On a lighter note...I always do a little something for Halloween...I went with hair this year.

I must say...it was fun!
Other than being QUITE cold outside.

I also had to share...the latest pic of Jacob with his BFF.
Honestly...they are WAY too cute together!

That's about all I've got.
Considering the temp is around 40 degrees now...I NEED to officially switch out the summer clothes. I HATE this part in the changing of seasons!
Thanks for checking in!

Memories...

2010-10-24T08:20:00.002-04:00

I know...looooong time since my last post.
As usual...much going on in the Baker house. :0)
I have recently had "moments" which prompted memories...of my bio mom.

Interestingly enough...the other day I had remembered that she used to read poetry to me.
Yeah, I know.
I remembered that in the last "home" we lived in together...we would snuggle up in bed and she would read to me out of a poetry book. I had a favorite about an elephant...it was a silly poem. So, when I spoke to her, I asked her if she remembered that.
Immediately she said...absolutely!
She quickly added...that she vividly remembered...she would get high...be in the mood for some poetry and make me crawl into bed while she read it out loud and saw things on the pages that weren't actually there.
She said we would laugh and laugh.
Hmmm...I was slightly disappointed...I felt like it ruined my memory a little.
I felt like I had a positive one...and she took it.

A couple of days later, I was getting ready for bed...I pulled down my comforter and removed the big, fluffy, decorative pillows and...there was a card from my husband under there.
As I reached for it...a memory came washing over me.
As I stood there in remembrance...it felt like a small, warm breeze blew over me.
I was instantly all of 4 years old...we lived in the last home that my biological parents shared.
I stood at a large rock...on the edge of our property...my house, yards behind me...I repeated the words..."gum fairy, gum fairy...bring me some gum"...three times.
Then, as fast as my little legs would carry me...I would run inside the house...directly to my bedroom and throw the pillow off my bed...only to find...gum!
I remember it being...magical.
It was...fun.
My brother and I did it often.
We never suspected it was actually our mother.

I am positive that my mother suffers from a chemical imbalance.
I know that she made my dads life a living hell...but I think she was able to keep her darkness from my brother and I...while she was married to him.

I held onto that memory for days.
It made my heart happy every time I thought about it.
I thanked God for bringing the memories...even if I felt like she had "ruined" the first one.
In truth, it was still a positive memory.

A few days later...I sat at a small group function at my church.
I was seated with people I didn't know that well. *which was the point*
We all shared various things about ourselves.
As we went around the circle...a women sitting near me, shared her first professional place of employment. As she named the psychiatric facility...a chill ran down my spine.
Another memory.
The facility she named...was where my mother spent 3 months...after attempting to take her life.
I remember that day...vividly.
Her good friend found her upstairs...with her note and as she attempted to poor baby oil into her...in an effort to bring up the bottle of pills she had swallowed...she yelled for me to call 911.
I was about 9 years old.
"What is your emergency?" the voice had asked.
I'm not sure I can hear my own anymore..."my mom won't wake up...she took a bottle of pills"
The rest is a whirlwind of memory...the paramedics...being taken to my neighbors house, where I would stay until she was "better".
I remember watching the ambulance pull away...people lining the street in an attempt to see any "action"...I felt so alone and scared...wondering if I would see her alive again.
The days, weeks, months that followed are not as clear.
I remember going to school the next day.
I know that her "flavor of the month" boyfriend had picked me up and taken me for a few days.
I don't remember why I didn't stay with my dad...while she was "away".
I remember visiting her there.
I hated it...it was scary.

I actually had an opportunity to chat with this woman...who prompted this memory.
Learning that she worked in this unit...while my mother was a patient there.
She asked me how my brother and I "got out"...my only answer was and still is:
By the grace of God. by the grace of God.

At first I was slightly troubled that God had allowed this "downer" memory to resurface...when I already had plenty of those...and I was enjoying the reprieve of happier ones. After speaking to this woman though...and hearing her perspective on the people she worked with...I began to see my memory from a different perspective as well. As a child, I naturally internalized the traumatic "events" that I had experienced with her. I feel like He allowed me to see that, she is broken...in ways that I can't comprehend. She didn't desire to hurt me...or put me in situations that were harmful.
In His eyes...we are all redeemable.
His grace is sufficient.

Brutal Reality...

2010-10-03T18:31:00.003-04:00

For those who do not read our carepages or my facebook...this week has been trying.
Jacob has again had transient shunt issues...for 7 days now.
We have done a 24 hour, video EEG...just in case he is also seizing.
The thing is...no one knows what is going on with our baby.
Our Neurosurgeon could go in and replace his entire shunt...but we have nothing suggesting his shunt is not working. Anyway...that is what led to this:

Last night...I had a break down.
An emotional...breakdown.
On top of a full week of "episodes" and 24 hours in the hospital...my husband and I had a disagreement.
After said disagreement...I got in the shower...because well...I needed one.
Soon after getting in...I was consumed with sobs.
Not just a tear here or there.
Not tears flowing down my cheeks.
A full out...ugly...noisy...sob.
I found myself balled up on the floor of the shower.
My hot tears...distinctly felt over the waterfall of water.
I remembered that the smaller I make myself physically...the "safer" I feel.
I came undone.
The closest I've come to this in the past was somewhere around Grace's open heart surgery.
As I sat there...feeling it.
All of it.
I grieved.
I grieved over the lack of knowledge in how to care for my son.
I grieved over the loss of the relationship I used to have with my husband...it looks different now.
I grieved over not being the best mom...and best wife.
I grieved over not having a mother.
I need her.
I can count on one hand...the number of times I have longed for a mother.
Now is one of those.
I want her to hold me and say that everything is going to be okay.
I want her to affirm me as a wife and mother.
I want her presence.

On the floor of that shower...I thought about how people say God is the daddy they don't have on earth. I realize that he is also the momma we may not have.
He found me...right where I was...balled up in the shower...broken.
He whispered to me...I'm not alone in this.
He has placed amazing people...strategically in my life...to help fill the physical "gaps".
Nothing happens in my life that has not passed through His hands.
Nothing.
It was probably the longest shower I have ever taken.
I definitely came out emotionally cleansed.
I needed it.
We spend so much time caring for, surviving, fighting, keeping it all together...we often don't allow ourselves to feel it all.
It can be scary...I get it.
Allowing it though...is freeing.
Allowing yourself to be vulnerable and feel the brokenness...it's healing.
I'm grateful for it.

.
As a side note, we are pursuing treatment for Jacob in Chicago. They are known world wide for their research and treatment of Hydrocephalus. It's scary...it's far from home...we have peace about it...we are hopeful.

How quickly...

2010-09-22T08:09:00.005-04:00

I posted the following on Jacob's carepage.
I apologize if you follow both...however, I'm adding a "follow up" at the end...and for those who don't...Jacob fell off the sofa and began vomiting with lethargy and bradycardia...we spent time in the ER.
.

You know that we consider ALL of our children gifts to us.
We feel beyond blessed to have the honor of parenting each one.
I honestly feel so humbled though…that He chose us for Grace and Jacob.
Most of you know…or can imagine the hardships of having medically fragile children.
I am quite quick to share the difficult moments with you.
However, the “gift” in these two is…our constant reliance on Him.
Anyone who has children will tell you, their child is woven into their heart.
I assure you…it matters not, how they become your child.
In the moments of uncertainty…when they are in pain…struggling in the most basic abilities of life…your heart has nothing to comfort it…but Him.
These two keep us in a place of knowing…He is absolutely all we have and all we need.
We are dependent on Him in a way that most people will never have the privilege of experiencing.
That, my friend, is humbling.
As I take time to think about the years of this…two years of Grace in heart failure…many hospital stays and MUCH uncertainty. Now the past year of Jacob and his shunt…3 years of bending us...breaking us *when needed*…molding us into who He desires us to be. I feel like you can’t get our attention any faster or more intently than through our children.
I can rarely talk about them and what we have been through without shedding tears…it is honestly because I feel so very honored to have been chosen…to be their mother.
Thank you for sharing this journey with us!

A side note: I had some great visuals of Jesus in the ER with us last night. I ended on seeing him holding me...as I held Jacob. His arms wrapping around both of us. I felt led to share this with Emma this morning...after doing so, she immediately said "Mom...He answered my prayer! I prayed that He would remind you that He was with you...to show you that you were not alone." Perhaps last nights events...were so that my daughter could be assured that her Jesus hears her. I will take it...and be grateful!

That was straight from my heart.

I meant every bit of that post...it is absolutely how I feel.

The last bit *in bold* overwhelmed me. Honestly, that He is always present, always working...and we have no idea how He is using it...I love getting a glimpse of it. With ALL of that said...the following ensued last evening:

We have a movie theater near us that offers $2 movies once a week. I took Emma last night. *there is something special about doing it on a school night and coming out of the movie when it's dark outside!* Right before the movie started...I was feeling SO grateful to NOT be in a hospital. I shared that with Em...I said "man I am so happy to be here instead of in the ER like last night!" To which she smiled and replied..."Yeah, but it had me praying...and SO many other people. I saw your facebook mom...LOTS of people were talking to Him because Jacob was in there."

Conviction.

It had no sooner left my lips...saying how grateful I was for Emma's prayer experience...and then to dishonor that just hours later. I felt a little bit like Peter...no Lord, I wont deny YOU! Umm...yes, you will. So, I didn't deny Him but I didn't honor Him either. ICK! How typical...how quickly our hearts "move on"...forgetting His goodness. Especially in allowing us to see even a pinhole of how He might be using our situations. Always a work in progress...and thank goodness for grace...both from Him and my daughter. Of course, I had to thank her for reminding me of that and apologize for forgetting it so quickly. I pray she holds tightly to Jesus and the sensitive spirit He has given her!

Substance...

2010-09-16T08:39:00.002-04:00

Here's to hoping.
Hoping this post has some substance. ;0)

I have entered such a new chapter in life.
I'm acclimating...just like everyone in our family.

I've returned to a place where I desire to blog again...now I need the clarity of mind when I actually have the time! Not just pictures showing that we are alive...but real...thought provoking posts. *I know...it's been a minute!*

I have so much stored up in this brain of mine that I want to share with all of you...I will start slowly...and hope that I find time to return in the near future. :0)

This past weekend Michael and I spent all day Saturday in a parenting workshop.
*I will share more of what we learned in another post*
An exercise we worked on was, learning to see the "gorilla" in the room.
Looking at things from a different perspective...helps to see things more clearly.
I shared with you here a realization that I had in counseling.
Something that would seem so obvious and yet...I couldn't see it.
I had another moment like that this week.
*not quite as emotional...but I feel it holds much value*
SIDE NOTE:
Parenting is TOUGH.
Parenting a special needs and/or medically fragile child TOUGHER.
Preserving your marriage through these...ESSENTIAL.
*frankly, I think parenting teens could do a marriage in! ;0)*

So, a while back, my counselor had said to me, "It's easy for dads to get on the outside."
This puzzled me.
I had to ask...the outside of what?
The family of course.
I struggled with this thought.
Since you all know I'm visual, I embrace the idea that life is a dance.
Every step or move that we make, has an impact on the step or move that those around us makes.
She explained that men *in general* don't "dance" quite as fast as women.
She shared that even in moments where it may feel very little effort is being put forth...he is probably dancing as quickly as he can...trying to keep up. *with myself, the kids, and work. let alone therapies, goals, doctors, ect.*
So, I began to be *even more* intentional with Michael.
Giving him the benefit of the situation.
Looking at his responses from a different perspective.
Over the past few months...it has changed our dance.
Michael is stepping back "inside".
I got this great visual this week of what this looks like.
When you are tubing...and you ride up over the wake to get on the outside...it's easy. However, when you want back in...it's not quite as effortless.
That's how I see Michael now.
Holding on...dancing as fast as he can...finding himself outside sometimes, working his way back over the wake. Me? I'm asking the driver to slow down, yelling from the back of the boat...every encouraging word I can think of...to help him over! :0)
The truth is, our families work best when we are ALL on the inside. Even in those times where you feel like the person may not be having a positive impact. Something is driving the "behavior"...most likely a feeling of inadequacy.
If we approach everyone...*children, spouses, friends, strangers*...with the knowledge that they have only the best intentions, it changes our response to them.

I will share an example of a very intentional response to a difficult situation. *not that I have MANY to choose from ;0)* Michael did something for me this week that was not obviously "good" or for my benefit. It was a situation where I had to look at him and repeat over and over in my head "he is trying to help me...this is coming from a place of love".
I wasn't positive of this. It didn't make the event feel better necessarily. It did however, help me to keep my mouth shut and not say things that might be hurtful. I had to bite my tongue until an appropriate time came to discuss the situation. *not in the "heat" of it when we were both feeling misunderstood*
It works.
He was very much doing this out of love, even if it didn't feel loving to me. He would have felt very hurt if I had shared what I was feeling in response to his actions. I would not have intended to hurt him...I would also not have been able to withdraw my words and the pain they would have caused. We were both able to share our perspectives in a loving and respectful way.

My prayer is that I would respond this way more often than not, *which is not the case* with my children, my husband, friends, strangers, physicians, cashiers...you name it.

You MUST...

2010-09-14T09:08:00.004-04:00

go here!

If you are a momma...of a child who has EVER used anesthesia...you must go here.

Send this man, a surgeon...who perfected the use of anesthetics on newborns and babies...a birthday card. How many times have we said how thankful we are for the gifted surgeons, and medical science that allows our children to live and thrive? This is a very tangible way to show our gratitude and love.

Thank you Jolene...for having such a brilliant idea and sharing it with us!

*a personal post...perhaps with substance, coming soon ;0)*

A little of that...

2010-09-04T09:16:00.007-04:00

a LOT of this!

:0)

I'm a very proud football Momma.

Enjoying the football season.

Extremely proud of my son.

What...

2010-08-31T21:56:00.003-04:00

on earth?
Could my life look any more different?
I attempt to assess where I am right now and it's nearly impossible!
I'm just going to have to give you the highs and lows of the past week...
here goes:
>My brother returned safely from Uruguay. *high*
>Noah's soccer team lost their tournement game. *low*
>Grace pooed on the potty! *super high, don't expect it again anytime soon*
>Close (very close) friends going through SUPER tough times. *way low*
>Emma's soccer team won the first two tourney games...still going. *high*
>I'm only on the internet to check my kids assignments and grades now. *low...I think*
>All my kids are doing A-W-E-S-O-M-E in school. *way high*
>Working on homework every night until 9:30. *low*
>Baking 3 loaves of banana bread. YUM! *high*
>I was approached by a stranger leaving the hospital today. He litterally chased me down, to ask...if I am Hispanic. I'm not. Deep down I wish I were...wish I were fluent in Spanish...now I feel sad. That makes this one a *low* ;0)
>Held a family meeting and everyone felt heard. *high*
>Grace crawling on her hands and knees...on the food table...at a church function. *low*

See a pattern here?
Balance.
Who does not love some good balance in life?!
It's workin for me right now.

Not gonna lie...balance is great, but that last low...I'm struggling in that area.
The one where not everyone "knows" that she has special needs.
The one where I have moments of not feeling patient.
The one where I would have been so judgemental of her...before she was mine.
The one where soon after that she became "done" and just screamed...so I had to leave.
I struggle with this one friends.
Just keeping it real...I find myself failing in this area from time to time.
Also...had someone approach me and ask if Gracie is Autistic.
It rubbed me wrong...if you read this *and I'm positive you don't* forgive me for the look of shock and disbelief that you actually allowed that to come out of your mouth.
I'm still figuring this out.
She tries...I'm trying...it just doesn't always look pretty!

On a...weird note...Africa has been HEAVY on my heart the past couple of weeks.
*fear not, I have no plans to return anytime soon*
It has been in my dreams...consuming much of my thoughts.
There is just an ache in my heart to go back.
To soak it all in again...to love on those people.

OH, OH!!!! The towels can now go in the dryer!!!!! That means I can go to bed! Woo-Hoo!
This concludes your peek inside my brain. :0) Good-night!

When you...

2010-08-24T07:18:00.004-04:00

Pray for my family.
Certainly request supernatural healing or divine intervention.
More importantly, please pray that we be refined into the beings that He desires us to be.
My desire is to glorify Him in everything.
I failed in that yesterday.
The fear can be consuming and I allow myself to lose focus.
I run from truth at times.
It feels...easier to cave...I think.
The truth is though...it's sinful, it's exhausting, and it only carries negative consequences.

I will once again...give it back.
Bury myself in His truth.
Enjoy every moment I have with my family...at home.
I refuse to focus on what it will all look like...on any given day, if we return for surgery.
God has numbered each and every day of my life.
My children are no different.
Jacob's story is not mine to write.
I rest in that.

Can you..

2010-08-22T09:01:00.003-04:00

Can you love something that sustains your child's life...and hate it at the same time?
We have had a trying weekend.
Jacob has had 3 "episodes" lasting approximately 3 hours each...looking very much like a shunt malfunction. In Jacob that looks like: fussiness with groaning, sleepiness, limp, low heart rate *50-70 sleeping 90-100 awake* and refusing to eat.
I contacted Neurosurgery on Friday...sure that I was going to have to make the 2 hour trek when...he came out of it. He just woke up and started talking and smiling...his heart rate came up to normal. *130-140 awake 100-110 sleeping*
He has proceeded to do this 3 times this weekend!
What in the world???
It's so weird because, when it's good...it's really good. When it's not...it's scary.
I'm in communication with his surgeon through e-mail.
I love that.
I love that he trusts my judgement and knows that I know my baby.
I love that he gets I have 5 children...and a life 2 hours away from his practice.
I'm focusing on the positive.
Enjoying his "good" moments this weekend...attempting not to worry about the unknown.

Visual...

2010-08-20T08:01:00.002-04:00

I am a visual person.
Most of my thoughts...have images.
*not joking and surprised to hear, not everyone does...just sayin'*
The visual I have had of myself for the past few weeks is this:
Me...in a large body of water...plunging in and out...gasping for air.
Yeah, not exaggerating.
This is extremely tiring and a difficult way to survive.
I'm happy to report...I am currently doing the doggy paddle.
No land in sight yet...but breathing comfortably.

I've been quiet on the commenting.
You are all still in my thoughts...I'm still reading.

Proof...

2010-08-19T09:00:00.009-04:00

That we are still alive!
Caleb readying for football...My realizing that my baby's feet are significantly larger than mine!!! A day at the lake...My brother got a puppy...super nice to have one next door & not under my roof. ;0)Soccer...First days of school...

Our pile of back packs...minus one. Noah hasn't started yet, he's next week.

This has been such a HUGE adjustment.

Caleb is gone 11 hours, Emma is gone 9.5, Grace is gone 4.5, and Noah will be gone 7.5.

I have struggled with missing them.

I'm so incredibly proud of them...happy for them to have many new experiences.

Trusting Him...learning what our "new normal" feels like.

a glimpse...

2010-08-08T17:17:00.003-04:00

Last week...I was at the park...with this little one and Jacob.
She was wandering off, which is not unusual.
She knows...NO stranger.
She gravitates to boys/men.
I'm not sure why.
I make sure that she is always within sight.
People seem to enjoy her, so I don't try to prevent her from "making friends".
I noticed she was following a teenage boy around.
He didn't seem to mind.
I watched as she twirled in front of him...around and around she spun in her new dress.
I watched as she took a few steps away and called to him "over here, it's me Gracie!"
I watched as he stood up and looked all around saying "where? I don't see you!"
She giggled and covered her little mouth.
She always does that.
Then I noticed he walked over to a couple of friends...two more boys.
She followed.
I couldn't hear what they were saying anymore.
I saw her giving high fives...laughing and enjoying herself and their attention.
I could see the boys smiling and laughing.

I found myself feeling like I couldn't get over to her fast enough.
Suddenly, it changed.
It felt like a fast forward...
She is 12...oblivious to social cues and "ways of the world".
She is vulnerable, maybe being taken advantage of.
She doesn't know it.
Maybe the boys laughter is at her expense.
My heart was pounding out of my chest...I want so much to protect my children.
I know that it is a very real possibility that the above scenario could take place.
This is part of it.
Part of our life with Grace.

First...

2010-08-02T07:42:00.011-04:00

For the first time...since starting my blog.
It has felt overwhelming to think about posting.
Words cannot adequately describe how busy we have been.
I'm posting bits and pieces in pics...hoping it satisfies. ;0) We've celebrated two birthdays...Noah turned 10!

As usual...lots of time spent at soccer fields.

Look how sweet he is!

*and look at that brown grass!!!! We need rain :0/*

Grace had an AMAZING check up with Cardiology.

We are weaning her heart meds...hoping she responds well and we can avoid another heart surgery!

These two...share a special bond. I love getting to witness it!

I love the expression here. :0) It is so hard to not hug the life out of him. ;0) This one looks like "what are ya gonna do?" Don't be wooed Jacob!

He's telling her ALL about it here. This photo...you can't fully appreciate but...this leg he's pulling up, is the leg that he keeps extended. This is the day after our ABM session and he was all about bending that leg afterward! I have no words to describe how impressed I am with the over all changes we have seen in our kiddos since the session. It is definitely something we are going to invest in.

There was dying of T-shirts. Jacob learned to hold his bottle! We've been working on this for a while.

Emma is trying soccer for the first time...I could not be more proud of her.

Randomly found this guy waiting on the toast to pop.

Gracie got a birthday card from her G'ma Winnie and loved it!

Our Gracie girl turned 4!!!!

This baby doll is super cute. Its eyes open and close...its tummy moves like its breathing...it coos and talks...HOWEVER, it is proving to be a quite fussy baby. I find myself saying "Gracie get the baby its paci!" like every 2 minutes.

It has not left her side. She even slept with it. She is quite the little momma.This summer is a HUGE transitional time for our family.

We are no longer home schooling.

I want this summer to be ALL about our family.

I'm happy to report...it has been.

I regret nothing...I love that.

We are down to crunch time...just a couple of weeks left.

I'm working feverishly to finish my book for the kids.

It's more like a booklet...I wanted them to actually read it. ;0)

You will notice you saw zero hospital pics...that is what I love most about this summer.

Thank you for checking in on us...all is well in the Baker home.

media fast...

2010-07-25T08:16:00.002-04:00

Still alive.
Doing well...actually.
Had been considering eliminating all media for a week.
Did it.
LOVED it.
Got lots done.
Realized we could ALL live without it.
Just felt like we needed a detox of a different kind.
It worked.
We will be setting time limits on T.V, computer, and video gaming.

It feels good to be here again. ;0)
Thank you for the thoughts, prayers and e-mails...you guys are SUPER sweet to me!

Parades...

2010-07-12T07:34:00.004-04:00

We ventured into the city for our annual parade.
I typically don't go.
Not a huge fan of fighting crowds...sitting in heat.
In my attempt to be more spontaneous and have a super fun summer...we went.
I only had 4 kids...Caleb was at internationals for Bible Quiz.
Yes, I am proud.
Their team tied for 5th place.
This is our first year...they did awesome!
Hiding His word in their hearts...love it.
Back to the parade... ;0)
It was fun!
Fun enough anyway...Noah didn't collect hardly any candy. *which is why you go...*
Emma...wasn't impressed.
I...on the other hand, was in awe that Grace sat through it!The older I get...the more I appreciate our city.
I really love being down town.The bigger boy in this photo...I'm sure that this was his favorite part. :0)He thought they were the actual actors...is it wrong that I couldn't correct him?
Don't answer that.

Grace was totally into the waving part...even after they had walked by.First of all...she is SUCH a good big sis...and secondly...I just loved this one. ;0) I hope you are enjoying your summer!

P.S. Thank you for your support...I know I'm not alone.

I also feel that things are less scary...or overwhelming, once they are exposed.

Thank you for responding in love. :0)

Truth...

2010-07-06T21:47:00.003-04:00

It's appropriate that this post comes directly after my lake post.
I feel like I have something to share.
I'm praying it comes out...making some sort of sense.

Warning...this will be honest, raw...truth.

It will quite possibly be more than some of you wish to know.

Many of you are aware...I'm in counseling.

What you may or may not know is...one year ago I began seeing a Psychiatrist.

I was prescribed medication leading up to Grace's open heart surgery.

When I came off that medication...I felt I was losing my mind.

I took myself to a professional.

I sat in this stranger's office...crying...terrified he would tell me that I have a mental disorder.

To my surprise...he repeatedly assured me that I am NOT crazy.

I was not losing my mind.

Months later...my diagnosis came.

GAD

Generalized Anxiety Disorder

When he shared this with me...I thought he was SO off base.

I went through the motions with him.

In the 6 months that I saw him...I had spent months driving to the NICU, brought my baby home, had a shunt revision, and faced holidays without my dad...again.

Last October came...and he gave me the diagnosis.

He told me at that time...I needed to see a counselor.

It wasn't optional...he said that he would no longer treat me...if I didn't do it.

So...I did.

I found this amazingly smart, gifted, woman...to talk to.

She has shared much wisdom with me.

Surprisingly...she agreed with his diagnosis.

She had me read a book...I hated the title...but managed to glean information from it anyway.

*it was about panic disorders...which I could not relate to*

I've been meeting with her since December.

She is small in stature...soft spoken...has a great office.

*I grew up in therapy...the office says much. ;0)*

I look forward to seeing her when I go...I like to plan out what I might want to bring up.

I saw her today.

I had decided that I might want to share...an "ugly" side of myself with her.

Test the waters. *seeing as I'm paying her and all!*

What will she think of me?

So I skimmed the surface of "it"...and she didn't dive in.

Instead...she asked me about our time at the lake.

I'm thinking...OK...this will be a light session...all went well.

You saw the pictures...it was beautiful, restful, quiet....fun.

What you didn't see however...was me, not able to watch my children fish off the pier.

Something they love to do.

I couldn't watch them...hunt for turtles...also on the pier...near the water.

What you didn't see...was me having to leave the pier...after only 2 short minutes.

My stomach in knots...hands wet with sweat.

My mind whirling with thoughts of danger...irrational thoughts that I couldn't "challenge".

That's therapy lingo...challenge your anxious thoughts...change the behavior.

I tried...they just wouldn't go away.

I've been trying for months.

What you also don't know is...I can drive down the highway alone with no problem.

Put my children in the car and...I become a mess.

Don't let it rain, snow, be windy, or have fog because frankly...I can't do it.

The list of "situations" seems to be growing exponentially.

I cried today as I explained..."I feel my world is becoming so small."

I feel such bondage...and am doing everything to change that.

The lake...has been a gradual thing...it peaked this visit.

I don't like it...I don't like not being present.

I don't like avoiding...my life.

In fact...you could say, I hate it.

So my internal dialogue at the pier was: I'm not alone, Michael could help if something happened to the kids. They can swim and the water is not deep anyway. I'm not responsible for accidents that may happen. Let go.

None of it worked...and I asked her why...what am I doing wrong?

Have I mentioned that she is soft spoken? ;0)

She is...but when I kept repeating..."it's not working, it's just not working"

She began to raise her voice...a little.

Counselor: why is it not working?

Me: my brain must be broken...it's not listening to what I know is logical.

counselor: and what is that?

me: I'm not responsible for accidents.

counselor: no, that's not it.

me: OK...I don't have to save everyone...Michael can help.

counselor: No...I don't think that's it either.

me: really?

counselor: what are you afraid of?

me: being responsible for not protecting my children.

counselor: no *voice is even a little louder here*

me: not being able to save my children? *I'll admit...mine is elevated as well* I'm also slightly irritated with her at this point...why has she latched onto the lake anyway????

counselor: what are you afraid of Amber?!

me: ..... losing them...

And the dam of tears broke.

much silence and many tears followed

It is as if the lights have been turned on.

I know it probably seems obvious...I felt a little silly by my surprise at this realization.

Apparently that's part of an anxiety disorder.

It muddies things...making them unclear.

It masks itself as a great many things.

It distorts things...irrational thoughts have great power.

It is a very physical disorder...it takes a toll on your body.

It is a prison...and my cell has the smallest bit of light peeking through.

She assured me today...I am going to beat this, it will not beat me.

Today...that was very comforting.

Many days, I fear I am losing the fight.

I take comfort in her sharing that she believes I am having an increase in "situations"...due to the shunt malfunctions, Noah's surgery, Grace's arrhythmia's, ect.

She also shared...I need to come to terms with this.

I have to reach a place where I can...let go.

I know this freedom...I used to own it.

I think that spending significant time fighting FOR your child's life...changes you.

I'm no less of a Christian.

I love God no less.

I believe His promises.

I study His word and beg for freedom.

I'm also human, living in a fallen world.

This I know...I am NOT alone.

Neither are you.

The lake...

2010-07-05T08:25:00.007-04:00

My brother has a lake house.
He is kind enough to share it with us. :0)
Last week...my hubby took a day off work and we headed up for an over night. I'm convinced that unless you have spent significant time in a hospital...or home bound...you can't fully appreciate days like these.
More than once...I looked at this little one and thought how happy I am that we are NOT in a hospital. How free and content he looks in the solace of "lake life".
Emma is at the age where she NEVER wants her picture taken...I try to NOT get irritated with her. :0)

Grace...is NOT at that age. :0)

Caleb would refuse photo ops...except that he and Emma are 19mo apart in age...always competing...it makes him feel like he's "winning" when he cooperates with me. I'll take it. :0)
My favorite place is the beach area...not because I swim there...oh no, this girl does NOT do lake water. It is fun though...to sit and watch others. :0)
It also makes for good photos. ;0)
See...here's where momma sits...on the swing, with her camera.
Gracie LOVES playing in the sand.
Loves it.
Of course...one of the most fabulous parts of being at the lake is...rest.

So needed...so enjoyed!

We all need it every once in a while.

To get away from our life.

For at least 48 hours.

I hope you all had an amazing 4th of July...celebrating our freedom!

P.S. I started running again....we have switched to more of a "cross country" run...I think I'm in love. :0) Not only is it way prettier, my knees are thanking me. You who asked about our cleanse...feel free to e-mail me and I'll give you the scoop!

Bloggy love...

2010-07-01T20:30:00.009-04:00

I am flattered and honored...The entire Walp family...whom I've only met through blogging...
came to visit us today!!! What a special day for the Baker Bunch! :0)
Miss Vaeh, has CHD as well...her momma walked with me through Grace's surgery last spring.
*As well as during every other hospitalization...illness...up and down before and after!*
I vividly remember calling her on my way home from the NICU after visiting Jacob.
It was awesome to meet her in the flesh...finally.
Grace and Vaeh became fast friends!

I'm not sure what they were doing...but it sure was cute!

Big sis Gabie loved jumping on the trampoline! :0)
On to the swing set we went...Gracie wanted to push Vaeh.

Yay...they are having so much fun!!!

Up the ladder...Down the slide!

These next ones...just because I am TOTALLY in love with him! ;0)

I made the girls get out of their cars...so that I could get a pic of them together.
This is what I got...
They were not enthused. :0/This is what they wanted to be doing...

We...were having a fabulous time...sitting under a tree in our back yard...until...This happened...what? You can't tell what's going on?Look at this! Half the tree fell!!!!

It was totally exciting/scary...not kidding...I felt terrible. These last ones...are my favorite of Nevaeh.

That smile is too much!

Look at that sweet face...honestly!

Here's the thing folks...when you have read about...prayed for...talked to people that you have never physically met...and then you meet them...it's cool. Very cool.

I was tempted to squeeze Vaeh when I saw her...however, she was a little shy.

Unfortunately by the time she left she was too tired. :0(

I fully intend on snagging one next time! :0)

Thank you Walp family!!!!!

Innocence...

2010-06-30T05:16:00.000-04:00

Sweet...summer...childhood...innocence. A tree frog...on his nose.

Last Soccer game...

2010-06-28T07:51:00.000-04:00

Wow...what a difference a couple of weeks make!
Grace is all kinds of loving soccer now!
Everyday she was saying "I go soccer...kick the ball!"
This program...I can't say enough about it.
Coaches, players...passionate about soccer...volunteering for children with special needs.A volunteer for EVERY child.
How many seasons end with "ring around the rosie" ?....not too many ;0)Grace with the "head coach".They take time to see what motivates...and use it.
Waiting with her buddy for her trophy.
I was completely surprised at how EXCITED she was over this!

Look at her happy little face!!!
Love...true love.
We saw her kissing it several times.
It remains within reach...all of the time.
For the adults and children who volunteer their evenings...for our children.
Thank you doesn't seem like nearly enough.
I am moved by the love and generosity they show us.

Make an on-line slide show at www.OneTrueMedia.com

Dedication...

2010-06-27T16:40:00.005-04:00

This was a momentous day for our family.
We dedicated our last baby!

Michael and I decided to go super casual.
For some reason...they caught us holding our mouths in funny positions.
Here it is...look at Michael.
Michael is thinking he is playing with his gum here...Awwww...I love this one.See..he looks angry here...he is not...he just looks like it. The cool part is...our pastor is my brother.

You can always hear the pride in his voice when he has the honor of doing these things with/for his family. It makes my heart smile. :0)

Chaperone...

2010-06-26T10:29:00.002-04:00

You may remember...two summers ago I chaperoned a Cedar Point outing.
This year, it was Kings Island.
Word must have gotten out about how fun we are because this year...we had 18 kids.
Only 4 adults.
Once again, I survived. :0)
Tina, did you feel my presence yesterday???
I saw the Wapakoneta sign! ;0)
It was a great time!
Again, the kids are so much fun to be around.
I only made it on 4 coasters this time...I just can't handle the "thrill" anymore!

I love that when you help with these types of events, you get to know all of the kids so well.
I hope that my kids always feel like I'm "cool" enough to tag along. :0)
If the older ones DO deem me "uncool"...I have 3 more behind them. ;0)
That thought actually wore me out yesterday.

P.S. Doing an amusement park AND a water park in one day = exhausted!

"normalcy"...

2010-06-23T08:20:00.003-04:00

What is "normal" anyway????
Seriously...we all know, there is no "normal".

I would like to believe though...this past week has been about finding our...normal.

Our "middle" child decided that he needed to earn some cash this weekend.
After a failed attempt at a garage sale...the idea of a lemonade stand was born. :0)Personally, I thought the price was a bit steep.
What do I know?
Noah and his cousin...set up "shop"...at the end of our driveway.
Using totes of clothes as a table.By the end of Saturday...they had earned a significant chunk of change!
That drove them to re-open on Sunday...after church .This proved to be the most lucrative day yet!
We discovered that we live in a housing addition full of generous, kind people.
Noah tallied over 10 hours working that stand.They earned just over $20.
They learned about start up costs...profits...and partnership.
All good stuff.
He wants it to be his weekend gig...at least until soccer starts. ;0)

~~~~~~~~~~~~~

In other news...I got out for coffee...with my hubby.
It was way over due.
I wanted to capture a snapshot of us.
Look at his face.
Why do we have trouble being serious?
Even in the best one...I'm not sure that's a natural smile.
Silliness is...good.
"normalcy"...even better!

48 hours post-op...

2010-06-20T08:18:00.006-04:00

Here we are...approximately 3 hours post-op.
*he's looking pretty happy*
Here...we are feeling MUCH better.The day after discharge...big sis Grace is sedated for an MRI of her knees.
Here we are...waiting for our IV. She was SUPER excited about the wagon ride. :0)

Waking...and riding back up to out patient.

Awake enough for a cracker.

Good as new!

I LOVE these.

Grace is always asking to hold Jacob...I'm sure these days are numbered.

No more ouchies Jacob...no more ouchies.

better...

2010-06-18T07:41:00.004-04:00

I guess that's how I would describe us.
Better.
Because that's what everyone is asking.
"How is Jacob...is he better?"
Well...he is.
He was also better two weeks ago, after sitting in the PCCU for 4 days before being revised.
Now...after yet another revision...he is...better.

I, on the other hand...feel like I am scraping myself up off of the floor.
This is the best way I can describe it.
It doesn't feel like I've been abandoned...or life's not fair.
It doesn't feel like why me...or I hate this shunt, even.

It feels like...I've been "bending" for...years, when will I break?
When does it become "too much"?
When it does become too much...what does that mean?
Does anything change once you reach that place?

I'm not unstable...or losing it.
I'm drained.
Living on the edge of your child's life.
Fighting...always fighting.
Watching...so closely for anything out of character.
Advocating...double checking their care.
Being on top of nurses, doctors, procedures...
Protecting...interpreting their cry...finding the origin of pain...
Traveling...being away from your other children...your support system.

I had a "sit down" with God Wednesday night.
After everyone went to bed.
The house was quiet...I was attempting to process the previous 36 hrs.
Seeing my son after surgery and the very real possibility of him coming out...forever changed.
The tears fell...softly at first and then I broke and they were nearly violent.
I felt like I just needed to keep God in the loop and list out what I could and could not handle.
I reminded Him of all I have been more than willing to accept and go through.
Because we KNOW that our children...all 5 of them were entrusted to us by His hand.
His spirit whispered to me:
"Do you honestly think that I don't know what you can handle? I know you so much better than you could ever know yourself. Did I not say that I would 'never leave you or forsake you'? Have I not walked with you every step of this journey? Save your energy...don't waste it trying to negotiate with me...I know well, the plans I have for you."

Well...It wasn't quite what I was looking for.
I was thinking something more like..."I would never ask x,y, or z of you."
It was truth though.
It brought peace...and humility.
I don't know who I think I am sometimes...but I am grateful that He gives me grace!

Like all of you...medically fragile children are not the only "elements" in our lives.
They are just the cherries on top. ;0)
We still have teenagers, marriage, bills, maintenance on house and cars...other commitments.
He is big enough though...He is.
I'm humbled and grateful that He is patient and loving in response to my limitations!

My first baby...

2010-06-14T17:08:00.002-04:00

My first baby...who happens to be 14 now...is at one the largest, nationally recognized football camps in the nation. He doesn't know anyone and has never done anything like this before.
He is 3 hours from home...in a dorm.
He is...worn out and feeling defeated.
If you think about it...please pray for encouragement and for him to be sustained.
He only has two days left... It is hard on this mommas heart.
I just keep telling myself...It's a time of growth, time of growth, time of growth.

Full circle...

2010-06-13T20:12:00.002-04:00

Most of you know by now...and many remember that last spring, I flew out to see Miss Moriah and her amazing momma. I can't explain adequately what that experience was like for me. I have thought much about having the opportunity to squeeze the necks of SO many of you...that I have walked along side through your journeys...or the ones who are walking with me.

Today, an old friend...who moved away a few years ago...came back to town for a visit.
She follows my blog...and carepages.
She knew all about Jacob and his recent hospital stay.
She has been on her knees for my baby.
So...when she saw him today...she was overwhelmed.
It was as if she couldn't get close enough to him.
She was just so obviously...overjoyed to be near him and see him doing well.
She said..."It's amazing how God grows love in your heart for someone when you have spent so much time in prayer for them."
Which I TOTALLY get.
At one point she said...I just want to kiss him!
To which I replied...Go ahead! He is yummy!!! :0)
As I saw her go for it and delight in my baby...I thought of Moriah.
You can ask Victoria...I was like a moth to a flame once I got to the hospital.
It was like I couldn't get close enough to her...fast enough.
God has given me a love for that girl...out of spending HOURS on my knees on her behalf.
I'm thankful I got to see that love shown for my baby...it is a gift.
Thank you Julie!

Have I ever mentioned...

2010-06-12T08:37:00.004-04:00

That the average age of death in my family is...65.
It is.
Have I also mentioned that...my mom has battled breast cancer.
She has.
You may remember...my aunt passed away from breast cancer this year.
Both of my parents have high cholesterol, high blood pressure, & obstructive sleep apnea.
My mom has type II diabetes and suffered a stroke at my age.
My dad has hypothyroidism and had a complete block in his carotid artery 10 or so years ago.

All of this to say...that puts me past middle age.
Frankly...my genes are not promising.
Most of you know...I decided that this year, is a year of health for me.
I began making significant changes in January.
We started going to the Y at least 3 times a week.
Which led to...a change in diet.
No more coke...eating more vegies...no evening snacking.
Which led to...running...and biking.
Which leads me to...a cleanse.
Well...in the midst of all of this...I have felt "off".
I have been seen by my Internist, a sleep specialist, and my womanly doc. ;0)
Not much has been resolved or "discovered"...so I chalked it up to stress.
You know...the stuff that comes with heart failure, open heart surgery, numerous hospitalizations *2 hrs from home*, a baby in the NICU...on top of finances, teens and rearing developmentally delayed children...things of that nature.
Several weeks ago *like 4* I had some blood work done.
I just had nearly the same work done in Jan. so I was pretty sure it would be normal.
In the mean time...Michael and I started a cleanse.
Let me tell you...this is no easy cleanse!
Protein shakes...supplements...and ONLY raw fruits and vegies for the first 10 days.
We are on day 4.
I can say that the headaches are becoming bearable.
*I can only assume we are TOXIC...cause this has nearly done us in*
We are doing two different types of cleanse...Michael's is 21 days and mine is 60.
*he consumes way more supplements in a day than I do...so I think it balances out*
Well...I got the results of my blood work a couple of days ago.
I'm not happy about it.
My thyroid was low and my calcium is elevated.
As there is no good explanation for the calcium and "typically" if your calcium is high...your thyroid is also elevated. We are going to wait a couple of weeks and retest before we attempt to figure it out.
My thought is this...I'm more dedicated to this cleanse than ever!
We chose "complete" cleanses...liver, kidneys, and colon.
I can only think that my best chance of changing these labs...is to have my body in balance.
I'm hopeful.
I SUPER want to be around as long as possible...with the best quality of life that I can.
This way of living was not modeled when I was growing up.
We are hoping to change that for our kids.
Honestly...we already have.

P.S. Hubby said if this is anything like detoxing from a drug...he would remain an addict!
Yes, it's bad....but nowhere near withdrawals from drugs/alcohol sweetie. :0)

Last and First...

2010-06-11T13:29:00.004-04:00

So...Miss Grace has completed her first year of Special Needs Pre-School!
What a big girl she is!

We attended her end of the year program...it was too cute. :0) Grace handing out "ants" for a song.

Ready to sing our song.

Putting the ant on her nose...

and on her foot.

Pick me!!!

Grace is able to identify her name.

Name the letters in her name.

Tell you that she is a girl.

Tell you how old she is.

They have a word board that she put her name on...she then "read" the statement:

My name is Grace.

Talk about a blubbering mess! I couldn't be more proud.

Receiving her completion certificate.

Riding the bus for the last time this year.

She LOVES her bus.

~~~~~~~~~~~~

Along with the "last" came a first.

We are fortunate to have a local special needs soccer team.

It is sponsored by a local sport club.

They have a summer and a fall session...each one lasts 4 weeks.
I was SUPER excited...Grace, not so much. :0(

She cried/screamed for the first 40 minutes of the hour long practice.

She was just completely overwhelmed.

Unfamiliar setting...lots of kids...lots of anxiety.

You have no idea how nice it was to be in the company of parents...who get it.
I didn't need to apologize...or wonder if we were being stared at...nope, not here.

In fact...our sweet friend's dad assured us that this is normal...and not to worry.

Eventually...she came around. :0)

Playing with her friend's nanny. She LOVES her...too bad she's not free. ;0)

Kick it big girl!!!

With her girl friend from school...bffs.

This is with her friend's little brother...not kidding, can you believe he is just turning 2?

Our girls will both be 4 in July...they look like triplets!

Grace is happy because these are three of her most favorite people.

*3 includes the nanny ;0)*

Revision...

2010-06-09T18:53:00.006-04:00

"The" post.

You know...the one where I try to put into words...what we experienced.

Upfront I will say...every photo in this post is from my phone...they are not the best.

This is how the shunt revision "went down".

Friday evening, our family went for a bike ride.

When we got home...Jacob was a little lethargic.

I assumed it was the heat and that he was just sleepy.

He didn't take his evening bottle well.

This is rare...but again, I assumed he was just tired.

Shortly after putting him down for the night...he threw up.

This happens occasionally...but usually if he is fussing and didn't get a good burp out.

We get him cleaned up and back down. All is well.

The family went to bed...around 10:30pm Noah *who shares a room with Jacob* wakes me.

He says Jacob is crying and he won't stop with his passy.

I go in and get him snuggled back in...he quiets down...I go back to bed.

30 minutes later...Noah enters again...Jacob is crying.

This time when I entered...he looked just as I had left him...passy still in place.

My heart sank a little.

He was screaming.

I've only seen him like this one other time...the last time his shunt needed revised.

I hooked him up to the oximeter...when his shunt isn't working...his heart rate drops.

Sure enough...he was screaming and had a heart rate of 80bpm.

I contemplate what to do...it's nearly midnight...he's in pain...I'm 90% sure it's his shunt.

I decide to watch him for an hour...trying different things to comfort him.

Within that hour...he becomes floppy...another indicator.

As we are supposed to leave for a mini vacation on Tuesday...I decide to get the ball rolling.

Our surgeon is 2 hours away...I'm not about to pull that drive at 1am with him...alone.

I head to our local ER and request a head CT...hoping it will confirm the shunt.

*the last time he needed a revision...he did NOT have an abnormal CT...I was just hoping*

I encountered the whole...why do you think it's the shunt?...it could be the flu...why do you know his typical resting heart rate?...we may just admit him for observation due to bradycardia.

The fight response kicks in...I attempt to remain calm and share our experience 8 mo ago.

Thankfully he had been seen at this very ER where they misdiagnosed him...sent him home...and it was indeed his shunt.

He was way more apt to listen to me this time. :0)

Within the hour...we had an EMS transport set up for Indy.

Tears of relief flow...I've always been told that if we get him to Indy...it's smooth sailing.*knocked out...on the EMS. Very bumpy, loud, 2 hour ride*

He tolerated the ride well.

Only once did he worry the crew with his heart rate dipping in the 60's...they were all kinds of prepared. I was all kinda praying the "equipment" would not be needed.

We arrive in the ER of Methodist...this is where his surgeon works out of.

We proceed to be admitted to the ER...I find this odd...as we know he needs a revision.

I'll be very honest...this place is...ghetto.

I've never experienced anything like it!

Rows and rows of hospital beds...full of people...lining the halls.

We were put in the "constant care" unit...so we just had a curtain dividing us from others.

I can hear many calling out for nurses...pain meds.

It is nearing 4am...my "crew" has left us here.

It's cold, sterile, loud, and completely unfamiliar.

I begin to feel weepy.

The nurses are encouraging and listening...they get that it's his shunt.

They offer blankets and pillows...unable to give him anything for pain yet.

*they did give him Zofran for the vomiting...which I was grateful for*

I hear that the Neurosurgeon on call will be rounding soon.

He is an older gentleman...very kind and patient.

He agrees that it appears to be his shunt...he puts much weight in my opinion as his momma.

He says that he will have the pediatrician on call look at him...just to rule anything else out.

He explains what they will be doing to his shunt...to look for the problem.

He also explains that his shift is ending in an hour and we will be seen by another neuro.

I'm waiting.

Exhausted.

Alone.

I begin to cry and feel a bit desperate and alone.

I feel Him whisper to me..."be still...and know that I am God".

This is the first of many times that I feel this whispered to me.

The Pediatrician comes in...she is kind.

We proceed with all the same questions...why do I think it's his shunt.

I have explained this at least 6 times.

She completes her exam and agrees...it appears to be his shunt.

She requests he be transferred to the floor.

An hour later...we are told that our room is ready...it's in the PCCU.*peds critical care unit*

I'm also told that they need to start an IV and get some blood.

They get the blood but are unable to thread the IV...she blows the site.

My baby is in pain...it's 7am...I'm tired...my nurse is being so kind to me...I'm in tears.

We get to the floor...he gets in his gown...I get him settled, out of my arms.The CCU doc rounds immediately.

He has the most amazing bedside manner.

He is positive and encouraging...he asks if we know when the revision will be.

I explain that I thought it would happen asap.

Around 11am the new Neurosurgeon on call rounds.

He orders another CT...and a shunt series.

They all appear "normal".

He says that he doesn't want to tap his shunt.

*this gives us valuable info. The amount and clarity of the fluid is important*

He explains that he thinks Jacob has the flu.

It begins again.

I'm shaking...trying to remain calm.

I question the bradycardia *low heart rate*...explaining when he is "sick" his HR is elevated.

He was bouncing between 60-70 bpm.

His normal awake is 120-130 and his resting is 100-110.

He eventually agrees to tap...however, he is not thrilled about doing it.

He also orders an IV be placed.

While waiting for the tap...we attempt getting a line in.

He is poked...and blown, a total of 9 times.

NINE times people.

They got out this laser vein finder and it found...nothing.

He was so dehydrated and so used up from previous lines...he has nothing left.

They talk of putting it in his head.
Not in a kind...tactful way.

The lady just starts poking on him and pressing on his shunt incision saying "we could go here".

I *almost* kindly point out...that would make a revision tough...since that's where they go in!

Again He whispers to me "be still...and know...that I am God.

Neuro comes in to tap.

Our neuro has taped it several times...he rubs it with alcohol and taps it once...while I hold him.

This guy strapped him down...slathered betadine on it and proceeded to poke it 5 times.

FIVE times.

Each time...he is pulling back to get fluid.

Nothing is coming...he tugs and tugs.

My baby is...hysterical.

Screaming like I have never heard before.

It is almost more than I can bear.

My head is buried in the bed beside him...my heart was breaking.

He whispers to me again "be still and know...that I am God"

When everyone left our room...I felt this peace wash over me.

He loves him so much more than I can comprehend.

I began to rest in the truth that He is in control.

They were only able to get...less than one half of a cc.

They send it for testing.

Jacob becomes "wakeful" after the tap.

It's as if something was opened up...he started to engage a little.

I felt encouraged...at the very least this proves it's his shunt...and at best this may be enough.

With in an hour...he was out again.

The neuro did not want to do anything else today.

He felt the results after the tap were a fluke.

He is sticking with the flu theory.

You have GOT to be kidding me.

I call for Michael...I can't be here alone anymore.

I plead with my nurse...I can't watch him deteriorate like this or be poked anymore.

I explain that I feel like I am screaming for help...and no one is listening.

She assures me that she hears me...she even feels the doc knows.

He doesn't work on babies often and she feels that he is uncomfortable revising Jacob.

Well...I don't know about you but...I don't want somebody working in my baby's head if he doesn't feel confident.

I began to pray that miraculously...our surgeon *who knows & loves our boy* would show up.

Our sweet, sweet nurse shared that she holds his cell # and e-mail...she began contacting him.

In the mean time...we sat through another day waiting.

Sunday arrives.

The CCU doc is certain he will be revised soon...as his vitals continue to deteriorate.

He attempts to place an IV...twice.

Misses...twice.

I plead with him to allow it to be placed in the OR if necessary.

He attempts to get the plan from neuro...they don't have one.

We find out later that EVERY time Jacob's rate dropped in the night...our nurse paged neuro.

She did not want them to forget about him.

*it's the little things ;0)*

Sunday around 2pm...neuro rounds...he agrees to go in and look at the shunt.

He also gives us the WORST case scenario.

Shares that he does not believe it's the shunt...and that he may come out worse.
I begin to beg for our regular neuro.

*I did become a little frantic*

Within hours...we learned that our doc was in Greece.

*really????*

Just as quickly as we learned that...He whispered to my heart again:

It is not the vessel. I could use the janitor if I chose to.

At the end of our pre-op conversation with doctor doom...I said to him, Thank you for sharing that with us because now we know how to pray. We will ask that it be up front and obvious.
Of course...now he needs a line.

Neuro doesn't want to wait until he's in the OR as that can put everyone behind.

The outstanding CCU doc is called back in. *yes, he's home with his family*

He is able to get a central line in...on the first try.

He knows our fear of infection...so he uses a shorter catheter and leaves orders for it to be pulled asap.

After 10 minutes in the OR...we are called to say it was best case scenario.

The surgeon came out and said...well, it was up front and obvious.

In his 30 years of practicing...he has never seen anything like it.

An apology was never given.

That's OK...maybe he learned a valuable lesson for the next one, who doesn't present as they should.

The post wouldn't be complete without a photo of me...going nuts...waiting for discharge. ;0)

New...

2010-06-07T20:23:00.005-04:00

Well...apparently no one has heard of ABM...that's OK...I still love you. :0)

In other news...someone got a HAIR CUT!
Can you believe it?
She also got new glasses.
I think she looks so much older!

How cute is she????

School is almost out...and our girl will soon turn 4.

We can barely comprehend it!

question...

2010-06-06T08:19:00.002-04:00

First...I am absolutely blown away at how BUSY we are.
Not kidding...life feels crazy right now...and I know it's only going to get busier.
*I'm such an easy going, slow paced girl*

So, I stumbled upon a local "meet up" group for parents of special needs kiddos.
I am already excited about the resources I was able to find there!
One is...I am very interested in Hippo therapy for Grace but it is:
1) expensive
2) I have 5 kids...what would the others be doing?
Well...they pointed me in the direction of a local ranch that connects rescued horses with children in the community! All of our kids can participate in caring for/riding them! It's not "therapy" but I would think that any movement on the horse is better than none. Super excited about this.

Also...*and here is my question* in that group is a dad of a little one with a rare chromosome disorder...he is trained in the Anat Baniel Method or ABM. He is offering a free clinic for our kids. Now, I live in...well, lets just say...not a very "progressive" area. None of the families in this group have heard of this. A while back I read a blog...the child used ABM. I *of course* have googled it...but am wondering if any of you have used it or have thoughts. I'm curious...would love to see what they do...also wondering if I want to add one more thing to the schedule! :0)
Thanks for any thoughts!

Fun pics first...

2010-06-03T09:26:00.006-04:00

Let's just say...yummy. My girls...happy.

Running in the waves...a favorite for all.

No words needed. :0)

So thankful to be here...doing this.

My babe...cashed out.I placed him on a lounge chair...created shade...and he slept for 2 hours.

Splashing with big brother.

One of the few pics of...all the kids in one spot. *Jacob is sleeping* These were EVERYWHERE.

Day two was spent at one of the largest, family owned dairy farms in the U.S.

Yeah...I know, she's growing up. :0( Seriously mom?

They have all kinds of things to do here!

Go Caleb!

There they all are!

Now, back to life we go.

Michael is still on vacation.

We get to wake up with each other a couple more times.

All is well.

processing...

2010-06-02T19:09:00.002-04:00

If you have visited Jacob's care page...you know that we had an overnight family get away.
We are home.
It was...perfect.
We feel...connected.
Rejuvenated.
Rested.
Sun burned. :0)
I will post pics soon.

In the midst of everything...I've just started to process all that we experienced.
It's a lot.
I am SO looking forward to my bed tonight.
I'm even looking forward to getting my house back together.
We were in the middle of "life"...when we left suddenly.
We were gone for 4 days...back for several hours...gone for 2 more days.
Lets just say...um...the house could use some attention. ;0)

Thank you...more than you know...for holding our family in your prayers.

update

2010-05-29T17:13:00.001-04:00

updates on jaco are being posted on his care page. thank u all so much...i value you more than you know. his link is on the side bar

please pray

2010-05-29T10:57:00.001-04:00

jacob was taken by ems 2 indy. we r in the picu. im exhausted. god is still good and present. thank you

a BIG God...

2010-05-28T19:27:00.003-04:00

Well...in my "blog world" it has been a rough week.
We have lost some amazing little ones.
Each has made an imprint on my heart.
*and given me a bit of a tummy ache*

If you've been here for any length of time...you are familiar with Moriah.
I have also followed closely...our little friend Carter.
Both families, ironically use the "team" approach. *which I love :0)*

Both of these families and children have battled for their baby's lives.
Both of these families know it is a very real possibility that their children's time on this earth could be very short.
They live with this knowledge every day.
Both of these families know Jesus Christ as their savior.
They both know that it is He alone who ordains and orchestrates their lives.
This is their source of peace and hope.
As it is mine.

They are both at a pivotal point.
Carter is...critical.
There are many unknowns.
Unfortunately...there are also...knowns, that aren't positive.
Carter...needs a miracle.

Miss Moriah needs one as well.
It is so difficult to imagine, in the midst of all her progress...that her body is "broken".
She has battled through so much in her short little life.
Her body is fatigued.

Should God be glorified more...by healing them...restoring their bodies...I beg for that to happen.
I know that even the longest of lives is but a vapor.
Children are just so pure and beautiful...fresh from our Maker.
It makes the loss of their physical presence even more painful.
If He should choose to take them home...I ask for peace and healing of hearts left behind.

As I was contemplating how amazingly huge our God is...I was remembering.
Which led me to a site called Stone Markers.
It is an outstanding, tangible way...to "remember" the hand of God in our lives.
Even in the "storms"...He is very present.
I will remember that.

Much love to my sweet blogging friends tonight.

Running update...

2010-05-27T08:01:00.002-04:00

Oh yes...I'm still running/walking.
I've made it through shin splints and aching ankles. :0)
I'm just ending my 7th week.
I have learned much about myself.
Like, I get bored easily.
Uh-huh.
So, imagining different things helps.
ie: Victoria...giving me a high five. :0)
Michael...from Biggest Loser...if he can do it, I can!
Imagining my kids being proud of me.
That all started to fail me though.
SO...I added music.
Ah yes, that's the ticket.
Made a HUGE difference!
I have recently obtained a bike...so I'm mixing it up by riding a couple of days a week.

To encourage myself...I tallied my miles logged.
Are you ready?
I've only had the bike for a couple of weeks...and it has rained MUCH here but...biking,I have covered 12 miles.
As for the other...
*drum roll*
On foot: 33 miles!
That feels...EXCELLENT!
Not gonna lie...it inspires me.
Well...that and the song "It's Your Life" by Francesca Battistelli ;0)

Also on the horizon...a cleanse.
Not just a colon cleanse. *yummy, I know*
This is a complete body detox/cleanse.
I'll have to cut way back on the physical exertion during that time.
*approximately 3 weeks*
I'm looking forward to it though.
I'm sure that I do have build up in my kidneys, liver...all that good stuff.
I don't have a great family history.
All grandparents on both sides...dead by mid 60's.
That puts me past middle age.
My parents are both nearing these ages.
It gives me a bit of an eerie feeling.
I've done SO many things differently...why not this? :0)

When I went to see my *eh-em* female doctor...she spoke to me for quite a while concerning stress on women. How are bodies create hormones and how our body holds onto those long after the "event" or "season" has passed.
Well...considering many who read here...live in it...*myself included* this may be helpful.
I'll let you know how it goes...if I love it...I may have to give my humble opinion of it here.