Jackson's 1st Birthday...What a Day to Celebrate!!

Wow...to think that 1 year has already gone by when Jackson was born on December 5th, 2008. I remember the day like it was yesterday, a blessed day with the birth of a new child, yet at the same time the most helpless and afraid I have even been in my entire life. So many lows and what feels like absolute Mike Tyson punches to your gut...possibility of glaucoma, a very rare syndrome (M-CM...what is that?), hydrocephalus surgery, developmental delays, Chiari Malformation, Decompression Surgery....and the list goes on. What more does one beautiful little kid have to go through...really? Of course, it's hard not to feel this way...I mean J has gone through more pokes, prods, surgeries then someone will have in their lifetime.

Despite these hardships we refuse to take the woe is us attitude...why? Honestly, we are happy and so blessed as a family to have Jackson. Do I wish he could hold his head? Crawl? Eat regular food? Play on a sports someday? The answers to these questions is yes..yes..yes..and yes. However, he through the grace of God has taught us so much about how we live our lives, what things are important, how to treat other people, appreciation of things we took for granted in the past, and so much more. I have so much admiration and love for Jackson and those that are born with special needs. I have special prayers that God will work in the hearts of those that contemplate the abortion of children with special needs (90% abortion rate of children diagnosed with downs syndrome in the womb). I can tell you that Jackson is Perfect and has made Sherry and I better parents and ultimately better persons...Thank you God..

Happy Birthday Jackson from your entire family who loves and always will for who you are......my prayer for my son is that God continues to give him progression in his development, good health, and a fullfilled long life where his disabilities will be overshadowed by his ability to impact the lives of so many more people...NEXT FIGHT...January 4th, 2010...He'll Win...Not going to lose with the corner he's got. Stay Strong...Keep the Faith..

Decompression Surgery

The results of Jackson's MRI showed that he does not have a tethered spinal cord (which is good), but it did confirm that he does have a large chiari malformation. Therefore, we scheduled decompression surgery for January 4. This is a big surgery and with a fairly long recovery time.

Eric and I are so thankful for the internet and the ability for us to connect with other parents who have children with M-CM. I actually feel very prepared and well informed about what to expect with this surgery because of all the input I have received from so many parents who have already gone through this. We are also very thankful for a great neurosurgeon who actually listens to what we have say and takes it into consideration. And finally, we are so thankful for all of you who so faithfully keep us in your thoughts and prayers. We are so very blessed!

Please No More ER Visits after MRIs

Ok...so you all remember the post Long Day on October 15th. Well this should have been entitled Longer Day on November 16th...Sherry and Jackson traveled to G-Rap to have another MRI on the upcoming surgery process on whether or not Jackson has a tethered cord and a syrinx (fluid in spinal column). We know that Jackson already has to have decompression surgery and this was more to see if this also was occuring, so the neurosurgeon could take care of all at the same time....MRI results to come next Tuesday Nov. 24th.

Well, after Jackson got back from the MRI, he had a barky cough and stridor (signs of croup). So gets back from MRI at 3:00 (got there at 8 AM), goes to Pediatrician at 4:00, goes to ER at 6:00. Long story short, Jackson stayed over two nights...Sherry and I took shifts. She took nights and Tuesday I spent about 7 hours with him. In the end, he basically had "severe irritation" on this trachial tube when he was sedated for the MRI...Let's just say he hates Medical people...Ok so this Halloween costume is out. I am sure he will learn to love them as the years go by and realize what great medical people he has to take care of him...just not today.

Thanks for everyone's thoughts and prayers...we never can have too many. We will update everyone on the results of the MRI and scheduling of the Decompression Surgery. Happy Thanksgiving!! We have so much to be thankfulful for!!

Gobble Gobble
Eric

Fall

I love fall with all of the beautiful colors and cooler temperatures. Although, I could deal with fewer leaves to rake up. The kids and I really have not been able to leave the house much due to illness and colds, but we have managed to have a little fun over the past few weeks. Below are a few pictures of what we have been up to lately.



Our family at a friends Haloween party.
Eric and I won second place for the best costume.
Eric sure does make a lovely woman (:

Annika playing in the branches of a large tree of ours that partially fell down during some heavy rain.
Sadly, today we had to have the tree cut down completely. I think Eric is happy though that he will no longer have to rake up all the "spikey balls" that the tree dropped.

Fall=fuzzy warm pajamas

A long day

This past Tuesday was such a long day! Jackson had an MRI at 8 AM at DeVos Children's Hospital. Tests for Jackson are getting to be harder and harder because he has developed a huge fear of anyone wearing a lab coat or in uniform. He also freaks out anytime anyone lays him on the paper covered examining tables. I felt so sorry for him when they had to put an IV in him and when he screamed the entire time they gave him the oral sedation medication. It broke my heart when he would just look at me as if to say "why are you letting them do this to me." Jackson did well during the MRI, but he did wake up once so they had to give him more medication. After he came back from MRI I mention to the nurse that he felt really warm. She said that it was probably just related to the medication and being in the MRI and that he was doing fine. Next, we had to head to the neurosurgeons office for an appointment and get the results of the MRI. However, the neurosurgeon ended up being in surgery so Jackson and I had two hours to wait. We were both so tired and just wanted to go home, but I did not want to make the trek to GR later that week so we just waited. Finally we met with Dr Skarli and he basically told us what I was expecting, but did not want to hear. Jackson's Chiari malformation did not improve with the placement of the shunt. A chiari malformation is in the brain where pressure causes the cerebellar tonsils herniate downwards through the foramen magnum (this probably does not make any sense to most of you). Anyway this can cause serious problems if it gets worse. So sometime in the next few months Jackson will need to have decompression surgery. This surgery consists of removing the necrotic cerebellar tonsils, cleaning out the Dura, and performing a laminectomy (removing the top vertebrae to allow for more space). Obviously this is not something that Eric and I wanted to hear, but we knew that there was a huge possibility that Jackson would need this surgery. Before surgery Jackson is also going to have a MRI of the spine to see if the chiari is causing any fluid pockets (a syrinx) to form in the spine and to check if Jackson has a tethered spinal cord. Therefore if his spinal cord is connected at the bottom they can also take care of this problem and correct it ("clip it") during the surgery.

Finally at almost 4:00 Jackson and I were back on the road to Holland to pick up Annika. I think that I cried almost the entire way. There are times when it is easy to say "this is so unfair" and "how can God be in control of this?" Just recently though I read a devotion that really hit home to me that said "God's not only in control; He's right here beside you weeping with you." God is not just saying "Sherry just deal with this." But he is going through all of this with us, and he is crying with us when we cry. Jackson is not a burden to Eric and I, but our precious gift from God.

Well our day did not end there. When we finally did get home I picked Jackson up out of his car seat and he was so hot. I checked his temp and it was 103 degrees. I immediately gave him tylenol and called his pediatrician who told us to bring him in. I then got to spend the next five hours in the ER where they diagnosed Jackson with pneumonia. Jackson and I finally arrived home at midnight after an exhausting day. Jackson is now doing much better and today is actually acting like his normal happy self. A huge thank you for all of your prayers, they were definitely felt. "Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes." Matthew 6:34 (The Message)

Therapy

Once again Jackson has decided to surprise us and has started to lift his head on his own. Eric and I were hoping that he would be able to do this by his first birthday and so we are very excited that he has reached this goal. He still can only keep it up for a short time before getting tired, but he has held it for up to two minutes. Jackson is also rolling all over the floor and no longer stays on the blanket that I lay him on. This fall we continue to be very busy with therapy 7 times a week. At home we receive physical therapy, occupational therapy, speech therapy, and teacher services. Then we also go outpatient for physical, occupational, and speech therapy. Some weeks I feel overwhelmed by all of it, but then I see how it has already helped Jackson and know that this is something that we need to continue.

Jackson with his physical therapist Keri

Holding up my head!

Daddy drove over my trike...