Snow Fun Time and Christmas 2009

Oh the weather outside is frightful, but the fire is so delightful, since we've no place to go...let it snow...let it snow...let it snow. There have been so many great times and memories during this holiday season. From teaching Annika new Christmas songs (which she knows very well, including the motions to away in the manger..not bad) to building an impressive snowman with pomegranate nose and "spikey ball" smile to the annual "bite size" snickers for Old St. Nick. Yeah so we ran out of cookies, but Santa sure loved the "bite size" snickers. Santa gave Annika the piggy bank she was looking for (Hey Dave Ramsay...I'm starting her at 2). I was so thankful to have a lot of time off to spend with the kids and Sherry. There are many things that I learned over the holidays.
1. Bless You Michael Keaton because I could never be Mr. Mom (Sherry you rock!!)
2. Reminded again how important extended family is and how much fun they are
3. Never ask "Who made this"?
4. Just how much I love to eat and how much I hate to work out...Does Tiger Woods 10 Count?
5. Making Snowmen is a blast and a workout...am I out of shape or is Frosty just that grueling to create
6. RottenTomatoes is one of the greatest websites ever...
7. Santa Claus is real...I saw his shoe prints on the roof...I think he also drank some of my spiked egg nog
8. Lastly, how thankful and truly blessed I am to be married to such a wonderful woman who has sacrificed so much this year to do everything in her power to do everything for her children in a very trying year. Road Trips, Physical Therapy, Occupational Therapy, Speech Therapy, ER Visits, Surgeries, etc.. Now this Monday January 4th is just another hurdle in the journey. We know your thoughts and prayers will be with everyone involved during Jackson's surgery. We will keep you as updated as we can as much as we know as soon as we know it.

We hope you all had a blessed 2009 and we will see many of you soon in 2010...Keep the Faith

God Bless Us Everyone (sorry couldn't resist a Tiny Tim Line during the holiday season),

Eric

 

 

 

 

Jackson's First Birthday Pics on December 5th, 2009

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...

Running for a Reason: 13.1 for Jackson DeJong

Over Labor day weekend my sister, Leanne, ran a half marathon in Virginia Beach, VA to raise support and increase awareness of M-CM. Their theme was "Running for a Reason" 13.1 for Jackson DeJong. Leanne and her friend Shannon ran together and finished in under 2 hours!!

Eric and I feel so very blessed and are humbled by so many of you who contributed to this cause. Over $2,800 were raised to support the cause!! This money will go in a fund to support Jackson's ongoing medical costs and necessary developmental equipment. Thank you again to everyone of you that continues to support our family in this journey.

Shannon and Leanne after the race.

Developmental Pediatrician

Sorry for such a long delay in posting, but we have had a long stretch with very few doctor appointments. It has been so nice to take a break and just enjoy the summer without being on the go all the time.

This past week we went to see the developmental pediatrician in Grand Rapids. She basically told me what I already knew- that developmentally Jackson is way behind. Even though this is something that we know and fully accept, it is still hard to hear the expert confirm it. She also has never had a patient with M-CM and so she really does not know what to expect with Jackson's development. She instructed us to start to look into assistive technology. She would like Jackson to start to use a language board called a Big Mac. This is basically a board with large buttons on it (like the easy button) that he can learn to push to start to teach him to communicate with us. She did not feel that Jackson would do very well with sign language because it is a fine motor skill that she did not think he would be able to master. She also wants us to start to look into a motorized wheelchair. She said that she has had patients as young as nine months start using a motorized wheelchair to teach them independance. This is not saying that he will not eventually be able to walk or talk. Both of these are so that he can learn to do things on his own without relying on us to always pick him up and to make him more independant. We will eventually have a consult at MaryFree Bed to see exactly what Jackson will need and what will work for him.

Finally, Jackson has also started speech therapy. Right now we are basically working on trying to give him better musle tone around his mouth, imitating sounds, and working on feedings. We love all of our therapist which is a good thing since we see them so often. Even though it can be difficult at times to have a special needs child we feel so blessed to have Jackson and Annika . God gives us strength for each day and he has blessed us greatly!

Summer Fun

update

This week Jackson had an appointment with his neurosurgeon in Grand Rapids. Jackson's shunt is working great, but his head still continues to grow. At first the neurosurgeon was a little worried about the continued growth until I informed him that kids with M-CM continue to have head growth despite the shunt placement. I gave the doctor an article all about the neuro findings of M-CM and the doctor looked up at me and said, "Wow, you are really informed about Jackson's syndrome!" I have found that since it is such a rare syndrome it is necessary for Eric and me to be the expert on it and inform the doctors what we think needs to be done. We now request what test we think need to be done and the doctors usually follow our advice. We are meeting more families on-line who have kids with M-CM and are learning lots of helpful information and it is also so great to be able to connect with someone who completely understands what we are going through.

Jackson is now starting to coo alot more. He use to just coo occassionally and sometimes it would be a full week without hearing anything from him except a cry. Now daily he will coo and squeal for us. It is so great to hear him make some noise and Annika gets really excited when he starts to squeal at her. Jackson is also now sucking on his toes and can usually be found with his feet up by his head. We are always thrilled with every new thing that he does.

Finally, I just wanted to say that one of the hardest things to deal with is people starring at Jackson when we go out. I do understand that he looks different and sometimes I think that at one time I probably did the same thing. I really do not mind if someone looks at Jackson as long as they also will smile at him or say "hi" to him. So often we get the stare with just the puzzled or questioning look and that is harder for me to take. So if you ever see someone with special needs or someone who looks a little different and you find yourself looking at them just make sure to remember to smile at them also-it makes a huge difference.

Good News

Over the past few weeks Jackson has had quite a few tests and all of them have come back great! In the beginning of July, Jackson had a CT scan to check his shunt. This test showed that the shunt is functioning the way that it should and that the fluid is draining well. He also has had a swallow study which showed no problems and a ultrasound and lab draws both of which came back saying that there are no tumors. Jackson is slowly making progress with his strength. The physical therapists tell us that they can tell that Jackson is getting stronger and Eric and I can notice it as well. Jackson is eating great and gaining weight and is actually starting to look a little chubby! The doctors appointments are becoming less frequent and life is much more manangeable now. Now onto our next task- getting Annika potty trained!!

Vacation

We spent a relaxing fun-filled week at a cottage on Lake Michigan with the De Jong family. Annika had a ton of fun with her cousins and she is still waking up each morning asking to see Graysen and Max. Eric and I also got a much needed rest. Here are some pictures of our week.

The whole family

Annika loves the water and has no fear. Even though the water was freezing Annika and her cousins still played in it.

Annika, Graysen, and Max

Jackson

6 months

It is hard to believe, but Jackson is already six months old! So much has happened in the last 6 months. Jackson has brought us so much joy. He is such a blessing to us and he has taught us so much. We pray that God will continue to walk closely beside Jackson in his journey and fight ahead of him. Knowing that God makes everyone of us unique and special. God looks past all things society deems as "flaws" or "imperfections". He is perfect no matter what other will say or how they will treat him. I pray that Jackson will be a confident and loving person that only sees people for who they are. Demonstrating the love of Christ to all people no matter race or creed. "For I know the plan I have for you declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future." Jeremiah 29:11. Jackson, you are loved so very much!!!

Failure to Thrive

Sorry it has been so long since I have posted anything. I just wanted to give a quick update on all that has been happening over the last two weeks. First of all, about two weeks ago Jackson was diagnosed with failure to thrive. Ever since his surgery for his shunt placement in March his weight has basically stayed the same. We are now giving him everything through a bottle so we can accurately measure what he is eating. We are also seeing a nutritionist and a speech pathologist. The reason we are seeing the speech pathologist is to see what Jackson's muscle tone is like in his mouth. Often kids the hypotonia (poor muscle tone) also have poor muscle tone in their mouth. We want to make sure that we can give him solids without him choking and to decide if we need to make his formula more concentrated (so he can get more calories in fewer ounces). Currently, it takes Jackson 20 minutes to drink just 4 oz and then he seems to just tire out and not want anymore. Thankfully though, Jackson has started to gain some weight. Last week we also drove to Chicago and saw the pediatric dermatologist. We really did not learn anything new. When Jackson turns one we will revisit the issue of the port wine stain on his face and decide if he needs laser treatments. We are also busy with physical and occupational therapy. They both come weekly and Jackson is usually exhausted when they leave and he sleeps all afternoon. We are all throughly enjoy the nice weather and Annika wants to go outside the moment that she wakes up. Annika and I love it that Jackson sleeps so well in the afternoon so that we can spend lots of time playing outside. Thank you Grandpa for the scooter!!! We love it!!

On a roll

Last week Jackson started to roll from his back to his stomach. We are so excited to see him hit another milestone! He will only roll to the left side and he usually does it when he gets mad and wants to be picked up. Also, this morning Jackson held his head up for about 20 seconds while he was laying on his stomach. I feel like we are slowly making some progress.

Jackson has also started physical therapy and occupational therapy. They each come once a week and so hopefully Jackson will continue to improve with his strength. Annika also likes to participate with the therapy and makes it even more fun.

Thankfully our doctors appointments are becoming less regular and I actually got to experience a week with no appointments at all! Thank you for all of your thoughts and prayers!!

Kids in their Easter Best.

This year was really nice to celebrate Easter with both my parents on Saturday night and Sherry's on Sunday. We got the kids dressed in their Easter Best. Also a pic of Annika celebrating her birthday...I can't believe she is two already.

More appointments

Over the past two weeks Jackson has had more appointments and tests. Last week Tuesday Jackson had an abdominal ultrasound and echocardiogram. I never found out the results of these tests and so I am just hoping that no news means good news. He also had his blood drawn for a AFP level. His level was elevated but we were told that this is common in infants and we will know more when it is drawn again in three months to see if the level is decreasing.

This week we had appointments with the plastic surgeon and the neurosurgeon. Both of these appointments went well and actually kind of seemed like a waste of time. I felt like I drove all of the way to Grand Rapids to see the doctor for 5 minutes and to be told that Jackson is doing fine and then got back into the car and drove all the way home again. I guess I should just be thankful that everything is going well and that we do have such great doctors. Jackson always does great at all of his appointments and just smiles at the doctors. I think that he likes all of the attention.

Right now my biggest concern is Jackson weight. Ever since his surgery Jackson seems to be getting thinner and thinner. He is now 4 months and weighs 13 pounds. That really is not that great especially since he weighed 10 pounds at birth. His weight is now down to the 25 th percentile (he had been at the 95th percentile). The doctor told me not to worry yet and that we will just keep monitoring it , but like every mom, I want to see Jackson with some rolls of fat and looking chubby and healthy.

Jackson is trying at times to hold up his head, but it does not last very long. We enduringly call him our little bobble head. We should be starting physical therapy this week so hopefully this will help him gain some strength in his neck and upper body.

Well Jackson is crying once again (it usually takes multiple attempts for him to fall asleep for the night) so goodnight. Hopefully Jackson sleeps through the night tonight (:

Here's to You- Inventor of Cartoon Themed Underpants

Haven't you ever wondered? When was this decision made? Picture this...Fruit of the Loom Board Room:

Boss: "Our White Skibby Business is going down the toilets...literally. We have Hanes gaining market share with their innovative breatheable front opening and what do we have...we got nothin. Does anyone have any Game Changing ideas to turn our skibby business right side up.

Smith: I know this out there, but I was watching an old episode of Mickey Mouse and since I am a huge fan of Mickey Mouse, you all know this. I thought, ok I have a Mickey Mouse T-Shirt, Mug, Hat. What am I missing? So I thought, I'd love to have Mickey Mouse and his friends plastered all over my White Skibbies. Is this not an awesome idea? Think of it...Cartoon Characters on our underwear. I will bet Hanes doesn't have an answer for this...

Boss: Brilliant Smith...consider yourself promoted (and so goes the story)
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Segway: Annika wears her first themed underwear.
To put the carrot out there for our little Annika to want to use the potty, Sherry bought Annika "Dora the Explorer" Underwear. However, Sherry told Annika that they were Dora the Explorer Panties. So we let Annika wear her Dora the Explorer panties and this is exactly what she called them....pretty funny. She was so excited wearing her new underwear that she ran around our island several times screaming "Dora the Explorer Panties". You would have thought she won the lotto. For that moment....those Dora Explorer Panties turned Annika into a superhero, they were the coolest.

Thanks to Fruit of the Loom or whoever it was who made Cartoon themed underwear such a wonderful thing....I wonder if they sell Cartoon underwear for Adults because I'd love to have the "He-Man-Masters of the Universe" Underwear I once had as a kid. Maybe then I could feel like a superhero again.

More appointments

This week we continued to add miles onto our car. I never realized before how exhausting it can be to travel with two kids to so many doctors appointments. It is both physically and emotionally wearing. Yet at the same time I would travel anywhere if I know that it will benefit Jackson. First on Monday I drove Jackson to Indiana University where we met with a geneticist. She basically confirmed Jackson's diagnosis of M-CM and ordered a few more tests. Jackson is now going to have an ECHO to check his heart. Some of the kids with this syndrome have heart abnormalities and she just wanted to have a baseline of what his heart looks like. She also ordered an abdominal ultrasound which will be done every three months until Jackson turns 5 years old. This is done to check for a Wilms tumor (which is a tumor in the kidneys). There are very few kids with M-CM who have been found to have a Wilms tumor but better to be safe than sorry. This tumor almost always develops before the age of five. Then today I traveled to DeVos Children's Hospital to have Jackson measured for a special seat so that he can sit up and look around. Jackson still is not able to lift his head due to its large size and low muscle tone. Therefore this seat will allow him to sit up and help to strengthen his neck muscles and make him more aware of what is around him. Finally a note of praise that Jackson's shunt is still working great and he has not developed any infection. Thank you for all of your thoughts and prayers and cards!

Pics of the Kids

You can't create a blog and not have pics of your kids...Here are some of the latest pics of Annika and Jackson for the past few months.

Happy Birthday Annika!!

I cannot believe that our little Annika is already two years old!! She has brought so much joy to our lives and makes us laugh daily with all of her funny comments and actions. When I asked her today "how old are you?" she replied "two, March 22 and I am so big!" I will start posting pictures soon but we are having some problems with our connection right now and cannot post any at this time.

Update on Jackson

Many of you often ask how Jackson is doing so here is an update. First of all Jackson has been diagnosed with Macrocephally-Capillary Malformation Syndrome. This syndrome is extremely rare (less than 200 cases reported worldwide). It is very similar to M-CMTC (marcocephally-cutis marmorata telangiectatica congentia) http://en.wikipedia.org/wiki/Cutis_marmorata_telangiectatica_congenita

You can look at this link to find out more about the syndrome. Jackson was born with port wine stains located on his face and capillary malformations on his body. He was also born with a very large head. Since birth Jackson has seen numerous doctors consisting of a plastic surgeon, an opthalmologist (the port wine stain on his eyelid can cause glaucoma), a developmental pediatrician, a neurosurgeon, a dermatologist, and he will also be seeing a geneticist next week. All of these doctors are located in Grand Rapids and Chicago so we have been doing a lot of traveling.

This week Tuesday Jackson had an MRI because his head continues to grow at a rapid rate. The MRI showed that Jackson had fluid on his brain and he needed a shunt (his previous MRI in December was normal). Much to my surprise the doctor told me that he wanted to do surgery the next morning. So Wedsnesday morning we were back at Spectrum Hospital and Jackson had a shunt placed. Jackson did great and he was discharged already on Thursday. Jackson will have this shunt for the rest of his life. Often revisions are needed to be done with the shunt due to blockages, malfunctions, or infections. So please keep Jackson in your prayers and pray that his shunt will function well for many years without any problems. There is more to tell about Jackson, but I will write about him more in future posts. We are so very thankful for all the prayers and feel so blessed to have such a wonderful family and friends that have helped watch our precious Annika while we are traveling to all of our appointments.