Carter's Story

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This blog is a look into the life of our nearly six year old little boy, Carter. When I was just six months pregnant, an ultrasound detected that Carter's brain was missing its corpus callosum and he also had hydrocephalus. Doctors even told us that our little boy may not walk, talk, etc... but abortion was never a choice for us because we firmly believe that God does not make junk. We look at Carter now and praise God for the miracle he is! Carter loves to play, and he CAN walk and talk! Carter is continually proving himself to us, to our families and to his teachers. I have been priveleged to be able to stay home with Carter, Camden and Elliana since November of 2006 when Carter was born. I am so thankful I am here to hold his hand and face his challenges right along side of him. A mother's love only grows, this I know. Some days may be challenging but always worth it at the end of the day.


Born November 20, 2006

Thursday, November 1, 2012

My little transitional kindergartener!

I was reminded last night at our church's Fall Blast, that I had a had been THAT long since I have updated Carters blog. And wow has ALOT changed! The last time I wrote in here Carter wasnt quite even 5! Now, here in less than three weeks he will be 6! Carter started transitional kindergarten this year. Its his third year in school as he had two years in preschool. TK is like a 1/2 step up from preschool and a 1/2 step down from regular kindergarten. I just went two days ago to the school for Carters annual IEP/ parent teacher conferences. We set goals for the upcoming school year and I also learned about the progress he is making so far this year since school started! I was SO pleased to hear that he is making strides at school and that "he is a different kid" compared to last year! He focuses better, works harder and says some pretty great things! The difference from last year to this year is that Carter is no longer on any neurological medicines! He doesnt seemed dopey like he did last year. Cody and I decided in May that we were going to take that leap of faith and get him off the medicines that obviously werent working, as he would still have pain cries here and there. It made more sense to have our alert little boy with a few pain cries (usually last under 10 seconds) than a medicine filled little boy with pain cries. Carter has surpassed all his PT goals for the year as of a few weeks ago and so we set goals to work on his gracefulness (ex: standing still in line, not bumping into other kids or things)..His PT doesnt feel like she has to be at his heels like before (except if he goes up way high on the playground @ recess). As far as OT goes, that is probably where we need the most prayers. He HAS made progress but still is unable to fully dress himself, put on/take off his on shoes, do buttons, etc. He is doing pretty well with scissors I am told though and knows that scissors are 'serious business'! :) We set goals for dressing himself and also for writing/tracing lowercase letters. I (the momma) am dreaming of the day he can write his name! What a glorious day that will be, and I KNOW that it WILL happen! As far as speech goes, Carter is doing pretty well! He says some pretty funny things at times..I actually quit recording things in his baby book because he can say pretty much everything, we just are praying that he would develop an understanding for more. His comprehension is really great tho, in my opinion. Carter can recite lots of Thomas the Train narrations and songs which leads me to also believe hes got a great memory for things he loves! One struggle we still do have is toilet training though. Would you please pray for Carter to have an understanding of this? Its getting really hard to diaper a 5 year old who weighs in at 69 pounds. We have used incentivising, quarters towards new trains and I was instructed by Cody to not buy any more train items until he is using the bathroom regularly...but to be able to reach this goal he first needs to master the goal of buttons, snaps and zippers on his pray for that as well. Thank you all for your continued prayers. We are very much encouraged by Carters progress later and know that everything is in God's hands! In that we can rest easy. One last thing, you all should know. I requested his neurosurgeon to do an MRI this year as his last one was at birth (he had only had CT scans) and we learned that Carters midline of his brain never formed normally..What does that mean you are probably thinking? I am told it means he really IS a miracle. I had 2 different doctors, both who have been practicing since the 1970's, tell me that he SHOULDNT be doing all the things he is doing...walking, talking, etc..That might go on without any thought some days but then other days it really hits me..HE shouldnt be doing those things, but HE IS! My little happy man who didnt walk til 2 1/2 is walking, in fact he runs! My little jibber jabber is narrating, is asking questions, is telling people happy halloween, singing Happy Birthday (in full), saying prayers before he eats, saying prayers before he goes to bed, telling me what he wants to eat, reminding me that he gets a treat after his growth hormone shot, and the list goes on. Hes totally 'with it'. Hes our miracle..I am beyond amazed at my Carter and if you would know him (or maybe you do), you would be amazed too. Nothing is impossible, just may require a little more time, patience and effort!

Wednesday, April 27, 2011


Hey all- writing again because again its been forever since I have blogged! Nearly 3 months!
First off, I am now 24 1/2 wks pregnant...we are having a girl which is really exciting! Pregnancy wise, things have been going great...except the the restriction on me lifting things..10 lbs is supposed to be the max.
Camden is going to be 2 here in a couple of weeks, which seems unreal! He acts like a 2 year old however! He is a good boy for the most part, says sorry if he does something really good at throwing fits tho..hope that stage is over soon!
This blog is about Carter, mostly..and there are some things to be said about Carter. ;)
Carter has been doing pretty well in preschool...Has an aide named Laurie who is great with him. I am sure her job is stressful at times because Carter can be quite stubborn and not listen. He can put up such a fight at times. She uses pictures to show Carter whats going to come next at kind of mentally prepare him when they go from activity to the next. She also uses a star system...its like a countdown basically where she starts with 5 stars and then removes them one by one (attached by velco) and when all the stars are gone its either the start or end of something...i think it works ok for him.
We had an IEP for Carter a few weeks ago and last wednesday he did his first 'full' day..which was form 9-3...he did really great..even took a nap for a while (which was the part that worried me!)--Ms. Linda called me that afternoon to tell me that he had fallen asleep to Mozart on a cot...holding a plastic cow with his fingers in his mouth..(?)...Anyways, I was happy to know he did good that extended day. Today is another full day at preschool (his 2nd)..and I am praying right now that he is doing ok because he put up quite a fight going..which makes it so hard to leave him.

Medicine wise- We just got done transitioning his 'brain stablizer' medicine from Topamax to Neurontin...I hope that he doesnt have dizziness from the neurontin..which is the #1 side effect. We requested to switch his medicine because the topamax caused him to overheat while outside. With summer coming up, we couldnt have that. I also read that is could cause a 'decrease in growth'---and he is already on growth hormone medicine! So that needed to change!

Growth wise- Carter started his genatropin (growth medicine) on December 6th and I am happy to report that he has now grown a total of 2 inches since then!! The Dr. said to expect 3-4 inches the first year! I guess we are on track for that!! PTL! His weight has been really hard to watch though...that boy hasnt seemed to slow down..and he doesnt always eat much!! I always think that people probably think that all I do his feed him-which isnt the case. We go back to the pediatric endocrinologist May 17th and when we go, i am going to request they recheck his thyroid again as well--it was borderline last time. He may just need something as simple as thyroid medicine..that is my hope!

Health wise- the last few months have been rough for seems it has been non-stop sickness...he has had multiple ear a result of those we took Carter to an ENT yesterday and found out that he has to have tubes put in his ears here in a couple of weeks...Hopefully those will help!! I say with all the surgeries Carter has had to go thru, this one should be nothing! (Hope so anyways!)..Please pray that this surgery is successful and that Carter is sick a lot less going forth!!

Learning wise- Carter is flourishing!! He is always saying and doing things that surprise me (in a good way!!)..He sings lots of songs from preschool- is meeting some goals set at preschool- saying sentences which show his comprehension..Finally starting to learn some colors! It has always been 'blue-green'--now he is saying black, gray, orange-and appropriately! Next year we are planning on him attending preschool full time! This is my hope anyways..This past year has been a 'preparation' year...I am awaiting another IEP meeting- which is supposed to happen here in the next week or two- to set up schedule, transportation, etc for next year.
The baby (GIRL) is supposed to come August 8..Cody is going to take a week off from work then to help me out after my planned c-section...and then Carter will start preschool a week or two after that..I am hoping Camden is my big helper when baby comes. He seems to take to babies very well...even kissing my expanding stomach now..knowing there is a baby inside.
Thats about all I have for now..please keep Carter in your prayers!
Thanks and God Bless!!

Sunday, January 30, 2011

Livin and Lovin Life!

I realize it has been a while again since I last updated this blog about my I apologize! We have celebrated Christmas and the New Year and nearly a month since those things has already gone by. I have a few things to put in this ;)

Carter has been doing great in preschool, first off. He really seems to love to go there and it seems like every time we pull into the school lot he says "Mrs. Linda", and "schoolbus!"..I really think that he is going to like to ride a schoolbus someday! He really love the recess and gym time there, playing ball with other little kids gets him really excited! By the time I pick him up @ 12:30, he is usually exhausted though...and napping for me soon after that!

Growth: Carter as you know started the growth hormone medicine in early December...and we are happy to report that he has grown a 1/2 inch since then!! Yay! Cody always jokes around and says he hopes Carter grows 4 inches and 2 shoe sizes, and really that would be Great!! Hopefully the growing will continue! Little brother Camden is already @ 33 1/2 inches! Carter is now 39 inches, ptl!!

Life has been going on here at our home...I broke the news to our families at Christmas that we are expecting our third and final Van Schepen baby will come early August this year! Carter will be full time in preschool (my hopes)...a few weeks after baby and so that will leave Camden to be mommy's little helper with baby (another hope! ;)).

Carter is so smart..He continues to amaze us everyday with some of the things he either says or does! My mom was just telling me last night how Carter and Hanna played hide and seek while at her house..she said it was so sweet...Carter would come looking for Hanna, saying "Where is she?? Where did she go?"...and then he would peek while counting to 10 when Hanna was hiding...I thought, thats my boy! ;)

Thanks for reading!