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Saturday, February 18, 2012

A hurting heart

Tonight my heart is hurting.  A couple of things prompted these feelings.  Thursday night Jason and I got talking about Caleb going to the church nursery.  Right now he is still in the 9 month-walking room.  He will be 2 in two months.  He told his teacher on Thursday he wanted her to call me.  So she did and I came to see what was up.  He then told me he wanted to go play in the bubble room.  (obviously not in complete sentences, more like 1 and 2 words, but anyway it was very clear what he wanted) I say this to show that his mental faculties are not lacking! He can manipulate like any normal kid. :)  Then he tried to put on the water works when I said no he couldn't go play.  I laughed.

So when I drop him off in that room, a little part of my heart hurts.  We have talked to the nursery director and she has said that when he turns 2 he can move up to the 2 year old room.  (he will just skip the 1 year old room) So Jason and I were discussing what that would look like.  He can't sit in a normal chair very well at all and especially not for anything length of time.  He can't really play in a room full of kids on the floor either.  At home he can get out of his chair (it's a nice padded rocking chair) and he usually gets around by rolling to where he wants to go.  He usually lays on his side and plays with whatever he wants to.  That won't exactly work at the nursery.  So how do we give our kid a normal experience?  We are going to have to talk to them about it and discuss some of the ideas that we came up with, but for the first time I started to realize (just a little bit) what we are going to have to do for the rest of Caleb's life.  Caleb is different and has special needs, but we want him to experience everything he can.

Jason read Colt McCoy's book and back before we knew what was going on with Caleb he was telling me that the book was talking about how Colt's parents tried to prepare him for the road, not the other way around.  But I have no idea how to do that in this case.  I mean, how do I do that with a special needs child? A child who isn't like everyone else. A child who is going to look different than everyone else.  There are so many things that I feel so ill-equipped to deal with.

Anyway, I pictured him in his class, and I tried not to think about kids making fun of him.  Or not talking to him because he is in a wheelchair.  (he isn't yet but we are going to move that direction probably) The Parenthood episode this week had Max (the character with Aspergers) befriending a kid in a wheelchair.  The parents of the kid in the wheelchair brought him over and told Max's parents that he has never had a friend before.  Ugh. My heart hurts for the struggle that Caleb will have in this area.  I mean he already got the short end of the stick physically, but now this too?  Ugh.

And to top it all off we went out to eat after church tonight.  Watching my little precious boy struggle to sit up in a highchair was killing me.  His eyes were rolling around as they do when he is tired at the end of the day, and he was having trouble holding his head up. Tonight it got to me.  Most of the time I'm in "business mode" trying to take care of all 3 kids.  But for whatever reason tonight I saw it and I hurt for him.  So if that's not enough, there was a table close to us and the young girls were staring and laughing at Caleb.  Ugh.  Like an arrow through my heart.  So many things they don't understand.  So many things I have never thought about or thought I would have to prepare for.  My sweet smart boy that so many won't even want to get to know because he looks different.  He tries so hard.  He is so strong and makes his body work in the confines of it's weakness.  They don't even know! And it hurts me.  It hurts me for him, not for me.  How do I prepare my little boy for this cruel, harsh, cold world?

sigh. I guess one day at a time.  That's all I can take right now.

Moving forward we are going to talk to his physical therapist about getting him a wheelchair.  Most of the time the double stroller is the best thing for us to use since Jordyn is not walking yet.  But as Caleb gets older we think a wheelchair might suit his needs a little better.  So we are hoping that Scottish Rite or MDA will be able to help make this a possibility for him.  I would love something like the KidWalk, I just saw it on another blog and thought it would be great.   (on looking for the link I actually found quite a few videos of kids with Mito walking in them) I have also heard great things about Convaid and their strollers. But we will see what all happens in that area. Thanks for your prayers and support.

Love,
Jessica

Thursday, February 16, 2012

Results....Finally!!

After more than two months, we finally received the results from Caleb's muscle biopsy today.  We made this appointment back in October before anything had been scheduled but it worked out perfectly.  I called yesterday to make sure they had the results so we would be able to talk about them.


So here is what they found; the name of his particular disease is Mitochondrial DNA depletion with a Complex 2, 3, and 4 dificiency.  He said it's very rare but they are sure that is what he has.  (The Leigh's Syndrome is caused by the Mito) So they found the mutation in the mitochondria, now they are going to search for the gene.  (I think they are looking for the gene that causes the mutation.  I was able to keep up with almost everything scientific he said and I asked lots of questions but now that I'm typing it up I'm not completely sure how to word it, but I think that's right) Anyway, hopefully there is enough muscle left to test for the gene. (we will know within the week) If there is, then they should have those results in about a month.  Again they are saying a 50/50 chance they will be able to find the gene.   At this point the only thing that finding the gene will do for us is help us look at other children with the same gene to get a rough prognosis. (If there is not enough muscle left he said they can take a quick liver biopsy with just local anesthesia) 


As far as what "normal" looks like from here on out, we will meet with the specialist once a year and the neurologist at Scottish Rite twice a year.  They will keep an eye on his heart and liver through EKGs and blood work.  We are probably going to start getting him immunized as any of the diseases that are normally vaccinated for could be deadly for him.  


I asked him what life expectancy was like for Caleb.  Are we looking at 10 years or 30? He said, "more like 30 than 10." But honestly we really don't have any idea.  (although I'm going to take the 30 answer!!) From other people's accounts of what their children go through I think Caleb has a very mild form of Mito.  But mito is mito and at this point there is no cure for any form of mito.  The Dr. said they are making progress every year with working on diagnosing and curing mito.  So who knows, maybe in 10 years they will have a cure! Or maybe God will just miraculously heal Caleb before then, I'd take that too!


Overall it was a good visit today.  I got to ask all my questions and the Dr. spent almost an hour with us talking about it all.  For those praying- Caleb has been spitting up more than usual this week and we are not sure why.  We are searching for an answer, but it can just stop and we would be ok with that too. :)  Thank you all again for your love, support, and comments.


Love,
Jessica

Wednesday, February 15, 2012

Blessings from Heaven



We got a wonderful bill in the mail a few days ago.  Yep you read that right, a wonderful bill. Remember this post back from Caleb's muscle biopsy:


 we checked in at admissions, where they asked us to pay the $12,500 that insurance wasn't covering (haha) so we wrote them a check for $50 and went on our way over to surgery.


A few weeks ago we received a notice from Children's that insurance hadn't paid yet.  But what was interesting was that the total amount from the hospital was only $11,500.  (they originally told us it would be $14,500) I knew our current (but not for long!) insurance takes FOREVER to pay on claims so I wasn't worried, but was excited that it was $3,000 cheaper than they had quoted.  Well on Wednesday I received "the dreaded bill." (Although it wasn't that dreaded actually, more on that in a moment) I opened it and it had our final total at the bottom.  Take a wild guess how much? For an $11,500 surgery that our insurance only paid $1,100 on, we now owe $350.  Yep you read that right, three hundred and fifty dollars!!!!!!


How in the world did this happen you might ask?  Well I guess it's the insanity of insurance and hospitals.  See our insurance really only did pay $1,100.  And the rest was "adjusted."  So our total part is actually $400, (minus the $50 we paid on the day of the surgery) which leaves $350.  (I'm sure you probably could have done that math on your own...) How ridiculous right?? 


Now about that thought of the "not so dreaded bill."  From the beginning we have put our hope and trust in God.  Hope that He will heal our son, and trust that He will carry us until that happens.  There have been lots of things over the last 8 months that are little signs that He is watching out for us and providing all we need.  A $600 eye doctor bill that we only had to pay $20. Getting into Scottish Rite within a month.  Expedited appointments and entry into ECI. Getting a diagnosis within 4 months.  Amazing financial gifts from some incredible families (you know who you are!!). At the close of this year we were finally getting all sorts of bills from the "summer of searching" and had it not been for some Divine Providence we would be in a pretty tight spot now. (Not to mention trying to juggle 8 different payment plans!)  But God provided and we were able to pay off all of those bills from last year and even have money in the bank to pay off the hospital portion of the surgery!! We do have other bills still coming in from previous doctor visits, the surgeon, and the university that did the testing on the muscle, but I'll take it one miracle at a time.  Whether God chooses to write off the bill, or provide the money to pay it, He is showing Himself faithful to us!


We have our follow up visit with the specialist tomorrow and they have the results from the muscle biopsy.  I will of course share what we find out.  We are interested to see if they were able to get any answers, but also to find out what normal looks like for us.  Will we have 2 appointments a year with full blood work ups or what?  That's kinda what I'm thinking might happen but since I really have no idea I guess we will find out tomorrow.  


Oh, and one other thing, we are changing insurance companies.  Our current one would not let us add Jordyn and it only pays $1500 a year total for any doctors visits and lab work.  Caleb maxed out a whole year in 1 visit! So even though the network came through for us with the hospital portion of the surgery, we are getting some better coverage.  It has a much higher deductible (which I'm a little scared of) but I don't think it can be any worse than what we have right now! It's also $200 more a month which I'm a little scared of too.  We really don't have a lot of wiggle room as it is and that takes a chunk of that room away.  And yet, my hope is in God my salvation and my song. We aren't worried (most days) because he will make a way. Thank you to each of you who have prayed and are praying.  Thank you to everyone who has given us money for Caleb's expenses.  I am blown away by all the support.  Thank you thank you!! 


Love to you all!
Jessica





Saturday, February 11, 2012

Our Homestead Happenings

So this is not a post about Caleb's medical condition.  And I'm hoping it won't be an emotional one about said condition. :) Just wanted to mention a few things going on, and maybe even talk about my other children! (shocker!)

We got the opportunity to travel over Christmas and see all of my extended family up north.  (Michigan and Illinois) We didn't go last year so it was great to be able to see everyone.  Of course we had to drive, ROAD TRIP! So that was quite the adventure with 3 little ones.  Allison had lots of crafts and games to work on.  Her dry erase supplies were a lifesaver! Caleb was very content just playing with one toy at a time and since we received a double screen DVD player for Christmas that took care of a lot of the entertaining too! Jordyn was not a big fan of traveling and the trip up there was kinda rough for me because of that.  But by the trip home she was an old pro and I even got to read a couple hundred pages in a book!! Sweet!  Jason drove almost the whole way there and back.
Grandpa and his grandson
Allison decorating the tree

After Dad's 1/2 Marathon


Family Christmas 2011
Big Helper
Sisters


Opening Presents
Repunzel and her hair!


Her very FIRST movie theater experience!
Great Grandma Syswerda


Great Grandpa Syswerda

I would say the most challenging part of the trip was all 5 of us sleeping in the same room for almost 2 weeks! Jordyn still woke up twice a night to eat, Caleb woke up and cried and then went back to sleep 2-3 times a night, and Allison was up as soon as she heard a noise in the morning.  But other than that it was a great trip! :)

I'm giving myself some grace concerning picture taking.  With 3 little ones I didn't really take very many pictures. I didn't get ANY pictures in Illinois! (really bummed) so Aunt Joanne or Sarah if you are reading this will you send me some? :)

Since we have been home we have been busy getting our garden ready for spring.  Jason has done a wonderful job in this area! I am so thankful :) I have really enjoyed starting to grow our own food.  I can't wait to continue to expand our horizons this year in this area.

Jordyn is growing like a weed! She is so awesome, we are so blessed to have her! She smiles and laughs all the time and is a pro at rolling over.  She started squealing a few weeks ago and this week she has started growling.  It's so funny! Her and Caleb both sound the same when they cry and it throws me for a loop sometimes.  She has also discovered her love of toys recently.  I introduced her to Sophie and she gnaws on her quite well! Jordyn love to chew on other people hands and can even hurt when she gets going.  She is still waking up once at night and again early morning (not a big fan) but I don't hate it too much. :) I cherish the time I am able to do this with her since I know it won't be much longer and she is probably our last.

Well here I go....Since meeting with the specialist in October and hearing him say we shouldn't have any more kids I have vacillated many times about not being ready to be done having kids and excited to start a new chapter in our family.  There are many times throughout my day when I am quite sure I can't handle any more, but then wonder if in a few years one more wouldn't be so bad.  I have kept all the kids baby clothes and all of the equipment for subsequent kids, but am now starting to let go.  Starting to empty tubs of clothes, starting to empty closets, and corners of the garage  feels so good!!  So while I'm still not ready to say we are for sure done having kids, I might be getting there. :)

Allison cracks me up all the time with her words and body language.  She is 3 going on 14! Some days it a battle of the wills but over all she is a wonderful helper and such a smart amazing kid! She is getting more independent, playing up in her room by herself.  Counting her money, looking at books, or playing with her dolls.  She still LOVES to be outside and since we have had a really mild winter she hasn't been disappointed.  She never wears shoes or socks around the house and prefers short sleeves and a skirt.  She still loves/smothers her baby sister whenever I am not looking and pushes the dogs out of the way whenever she walks by them.  (so funny)

Last bit of info.  Caleb has started to really communicate this week.  It started on Monday when he told me he wanted to go show Jason a toy dog he was holding.  It came out like this, "Dad, dog." But I knew that's what he wanted.  Each day he has told me something and I can tell he has turned the corner on his communication.  He has understood what we are saying for quite a while, but now he is talking back.  The funniest thing was him telling me that Mamaw is sleeping.  She was taking a nap on our couch and when he saw her he said, "Ma, leep"  I have never heard him say sleep so it took me a minute to figure it out.  He is always so excited when we understand what he is saying.  It's so cute! Tonight he held out his sandwich and said, "do!" He wanted me to feed it to him, me to "do" it.  I'm loving this! (however not the times when I have NO IDEA what he is saying because he has 15 things that start with an M sound)

We have an appointment with the specialist at Children's next week and we are hoping for some results from the muscle biopsy.  That and just to find out where we go from here.  I have no idea what "normal" will look like for us regarding appointments and tests and so forth, so hopefully we can get some of that answered as well. Ok folks, that's it for now!

Love,