Check out my wheels!

Jackson recently got a Kidwalk. A Kidwalk is a gait trainer to help him learn how to walk. So far Jackson loves it and seems to enjoy being able to move around by himself. Annika likes to push him (which we discourage) because the wheels on back light up when he moves fast enough. Jackson also got new Mickey Mouse braces for his legs (which Annika also thinks is cool). Hopefully we will be able to get Jackson walking eventually!

Jackson's 2 year pictures

We recently had some pictures of Jackson taken for his 2nd Birthday. I thought that they were so cute that I wanted to share them.

Thanks Jen, for being so patient and taking such great pictures!

Geneticist

In November, we traveled to MSU to see Dr Conway, a geneticist that has done a lot of research with M-CM. Dr Conway had been at Ceadar Sinai in California and had diagnosed some of the kids that we have "met" (online) and amazingly he moved to Michigan! We feel so blessed to have a great geneticist that actually knows something about M-CM so close to us. We spent 3 hours with Dr Conway and the genetic couselor. He answered all of our questions and reviewed all of Jackson's MRIs with us. M-CM has only been recognized as a syndrome since 1997 so there is still a lot of unknowns with it. Dr. Conway was impressed with the size of Jackson's chiari (his brain overgrowth) since it was so large and was equally impressed with our neurosurgeon and the "aggressive" decompression surgery that he performed. He actually recently contacted me to get permission to speak with our neurosurgeon to discuss surgical management of kids with M-CM. This makes Eric and I feel so good that Jackson has received such great care and he has such a great neurosurgeon. We also discussed how often Jackson needs MRI's, ultrasounds, and other test and specialties. We decided to continue to do ultrasounds every three months (this is to check for any tumors since M-CM is an overgrowth syndrome it cause a higher incidence of tumors), and to do MRI more frequently. Finally, we also discussed the risk of having future children with M-CM. So far the cause of M-CM is unknown, but there has never been a reported case with 2 children with M-CM in the same family. Therefore, it is believed to be a sporatic, random mutation in the genes. He told to go ahead a have future children (not that we are planning to have another one soon). Jackson is now also enrolled in a research study to try to find the gene that causes M-CM. Honestly, this was probably the most informative doctors appointment that I have had since Jackson was born and I felt so good about all that we have done and are doing for Jackson. As for Jackson, he continues to surprise us all the time. He can now pull himself up next to furniture and if he is really motivated he will even take a few step along it. He is getting new braces next week and we just recently ordered a Kidwalk (a gait trainer) that will help him learn to walk. We are so excited for all that Jackson has accomplished, plus he is the happiest, sweetest kid ever!

Happy 2nd Birthday Jackson!!

We cannot believe that you are 2 years old already. Mommy and daddy are so very proud of you and all of the accomplishments that you have made this year. Your smile melts our hearts and we love you so very much!

Love, Mommy & Daddy

United we Stand...Go Blue..Beat the Buckeyes!!

Jackson Going Up Stairs

Happy Halloween!

Love, Mickey & Minnie Mouse

Pumpkin Fun

On Saturday we took the kids to DeVries Farms to get some pumkins

Jackson and Annika liked sitting on the train

and pretending to drive the tractor

and I forgot to take a picture of them with their pumpkins, but it was a fun morning!

Laser treatments

On Friday, October 15, Jackson will be having his first laser treatment to the port wine stain on his face. For the procedure Jackson is just lightly sedated with a mask, then the doctor removes the mask and quickly "pulses" the area with a laser. The actual procedure only takes a few minutes, but we have to go through the whole pre-op and post-op part which will make it take longer. The laser damages the capillaries below the surface of the skin which make them clot off. However, like I posted earlier, since the center of the face is highly vascularized and has more blood flow this procedure does not always work. There is actually very little pain involved with the treatments and Jackson will just be sent home with Tylenol. The area that they use the laser on will appear purple for about 10 days.
Please keep us in your prayers on Friday and pray that the treatments will be a success and that everything will go well. Also pray that Eric and I will not be too disappointed if things do not go the way that we want them to and the port wine stain does not lighten at all.

Below I have posted some pictures of Jackson to show how much his port wine stain has lightened since he was born.

Jackson at 4 weeks


As a baby when Jackson would cry he would turn bright red/purple from head to toe. As you can imagine this is what really concerned the doctors when he was first born.

Jackson today.

Computer problems

We have had major computer issues the last few weeks so I have not been posting lately. I still cannot post any pictures (and I have a ton of pictures), but I thought that I would give a quick update of all that we have been up to.

First of all Jackson now loves his stander. We usually put him in it 2-3 times every day and he will happily play for about 30 minutes before he gets fussy. Also in therapy we are really working on taking a few steps. Last year at this time Jackson could not even hold up his head so we are definitely making progress.

We also made a visit to the developmental pediatrician last week and she was also very pleased with the progress that Jackson is making. She was especially impressed with all the therapy that we are doing with him. Next week we start up again with Early On weekly for the school year. This means that most weeks we will have some type of therapy (PT, OT, speech, infant/toddler teacher) every day (Monday-Friday). I always schedule all of them early morning so that they really do not interfere with our activities, but right now I am thinking that it would be nice to be able to sleep in occasionally. Well I guess there is always the weekend.

Jackson is also finally on the surgery schedule to have laser treatments on his face on October 15. Dr Mann, the plastic surgeon, is in high demand and so it took a while before we were able to start these treatments. The actual procedure is very quick and according to Dr Mann not very painful. Since Jackson's port wine stains are right in the middle of his face, where there is the most blood flow, we were given about a 50% chance that the procedure would help remove or lighten the marks. I will write more about the details of the procedure as the date gets closer.

Finally, Annika had her very first week of 3 school this week and she had so much fun. I cannot believe that she is already old enough to be in school (wipe away small tear). It works great for us because we do all of Jackson's outpatient therapy while she is at school so she no longer needs to be dragged along and she gets to have her own fun time.

Well that all for now. Hopefully next time I will be able to post some pictures again!

A new point of view

In February we had Jackson fitted for a stander; and after much fighting with the insurance company it was finally ordered and arrived this past week. I am so excited about it and the possibility that Jackson will eventually be able to stand and walk on his own. Jackson, however, is not that happy about being strapped into it and now he actually starts to cry every time that I put on his AFO's (ankle braces). It seems kind of weird to have this contraption standing in my family room. Before it arrived if you came to our house you would never have known by looking around that we had a special needs child. I am getting use to it and I better since I am sure that we will be getting more equipment as he get older. Hopefully coming next will be a walking frame!

Jackson is not smiling here, but whinning for me to take him out. And of course, Annika also needed to be in the picture. She hates to have her picture taken unless I am taking one of someone else.

I still do not put Jackson completely upright. We are slowly getting him use to the feeling of standing.

Starting to get a little happier. Each day is getting better and we are getting better at finding creative ways to distract him. Our goal right now is to keep him in the stander for 15 minutes and we try to do this 2-3 times a day.

Jackson has started to like to stand up next to the ottoman. He has actually been crawling up to it and tries to pull himself up. He really is suppose to have his braces on when he stands because he is so low tone. Jackson can actually bend his foot up all the way that his toes can touch his shins. Sometimes being flexible is not a good thing.

Target here I come!

I am so excited that I just had to post that Jackson can now sit up in a grocery cart! This may not seem so exciting to most people, but it is so exciting to me! Ever since Jackson grew out of his infant car seat I have not been able to take him shopping with me unless I pushed him around in his stroller. I however am not coordinated enough to push a grocery cart and a stroller and so I would only be able to get a few necessities when Jackson was with. Today I thought, "why not try it again", and Jackson did great. So Target here I come. The only bad thing about this is that I might start spending too much money at Target again.

One more bit of good news is that Children's Special Health Care has approved Jackson for outpatient therapy and we will be starting again tomorrow. So Jackson, I hope that you enjoyed your time off, because tomorrow it is back to work.

Vacation Part 2: Louisville, KY

Our 4th of July weekend was spent in Louisville, KY with Eric's entire family. Eric's brother drove up from Georgia and the rest of us drove down from Michigan for a reunion. As always, it was fun to get together with everyone and we kept busy checking out all that Louisville had to offer.We spent one evening at Church Hills Downs and watching horse racing.

Annika and Jackson playing together in the hotel. Just recently Jackson and Annika have started to play together. Annika is finding it hard that she now sometimes has to share her toys, but it touches my heart to see them play together.

Annika with Graysen and Max at the Louisville Slugger Factory and Museum.

Annika LOVES her big cousins and she has been talking about them constantly.

Too bad that we live so far away.

We also spent a morning at the zoo. It was fun, but so hot!

Grandpa and Grandma with all the grand kids dressed in their 4th of July outfits

The kids traveled extremely well and the trip went very smoothly. We finally turned Jackson's car seat forward facing and he is so much happier. Here Jackson is with his favorite pal, Dora.

One more detour on the way home: Cincinnati.

Vacation Part 3: Cincinnati

For the final part of our vacation we stopped in Cincinnati, OH to visit my sister Leanne and her family. We only stayed for about 24 hours but it was a fun and relaxing time. Annika loved to play with her cousins and Jackson loved their dog. Annika also got to have her first "slumber party" with her cousins which she thought was so much fun. The kids were all crabby and tired the next day, but at least Annika slept for part of the drive home.

Annika, Ashton and Ella climbing trees in the backyard

Jackson with his new best friend London
(Jackson loves dogs and I know that we will eventually need to get him one, but I do not think that I am ready for it yet. Although, London is really cute).

Jackson, Adelyn and Wade swimming in the neighborhood pool.

Grandpa DeJong helped Annika cure her fear of pools while in Louisville and she is now doing great and getting braver all the time.

We also celebrated with fireworks and sparklers (a day late).

Nothing like letting your 3 year old hold a flame.

Thanks Wade and Leanne for putting up with us for the night!

Vaction Part 1: Indianapolis

Over the 4th of July weekend we headed out for Louisville, KY to have a mini-reunion with Eric's family. While planning for the trip Eric and I realized that we would be driving through Indianapolis where another family with M-CM lives. So on Thursday, July 1 we finally got to meet Makenna, and her mom and dad. This is the first time that we have had the chance to meet another kid with M-CM. We met for lunch at Red Robin and then spent some time at Makenna's house just playing with the kids and talking. Makenna is two years old and has gone through a lot the past year. Like Jackson, she also has hydrocephaly, but has had many complications with her shunt. After 12 shunt revisions she finally had her shunt removed in April and had a third ventricularostomy done where they basically make a bore hole in the third ventricular and she has had no complications since. Makenna and Jackson at first ignored each other, but after a while they started to check each other out. It was so great to actually talk to someone who understood what we were experiencing and we plan to meet up again in August in Michigan.

Jackson and Makenna

Makenna and her new wheelchair

After spending the afternoon with Makenna and her family we headed to downtown Indianapolis and stayed in a hotel for the night. The first night in a hotel with both kids was horrible and neither one of our kids wanted to go to sleep. I think we finally had both of them sleeping by 11:30. Needless to say they were both crabby the next day, but we still took them to the Indianapolis Children's Museum. This is the largest children's museum in the world and it was so much fun (I think that Eric and I had more fun then the kids did).

There is a large dinosaur exhibit and this was one of the really cool dinosaurs outside the museum peeking in.

Annika and Eric pretending to be dinosaurs

Annika liked to ride on the motorcycles

There was also a really neat Barbie exhibit which I thought was really cool since I use to love Barbies. Here Annika is at the Barbie reception desk. So cute!

Annika and Eric striking a pose

My little Diva

Jackson played a little, but was so tired that he really just wanted to hang out in his stroller. From here we drove to Louisville, KY. More about our trip to be posted soon.

Insurance companies

I thought that I would give an update on Jackson since I have not written about him lately. No news is good news and so he has been doing great! A few weeks ago Jackson had an MRI to see how everything is looking since his surgery in January. The results came back good. The neurologist said that Jackson's head still does not look "perfect", but we were not expecting it to. The MRI did show that the surgery was successful and there is no longer any herniation of the brain into the spinal column. We are also thankful that it looks like his brain growth is starting to slow down and so hopefully we will not need to have this surgery done again. When we were ready to leave office the surgeon said that he did not need to see Jackson again for a year! I was so surprised and still am not sure how I feel about this. He had been seeing the surgeon about every three months and for me it was always a reassurance to know that Jackson was still doing okay. Since kids with M-CM seem to have overgrowth until about the age of two it is reccommended that MRI' s should be done every 6 months until the age of two. Jackson is already 18 months and the surgeon really did not think that another MRI is necessary, but I still might call him and request one in 6 months (not that we enjoy doing them). I guess I am still a little leary that everything is going to reamain okay.

Physically, Jackson continues to make improvements. He is sitting great now and for the first time yesterday he managed to get into a sitting position by himself. He is now starting to tuck his knees under him and push up so hopefully are moving in the direction of crawling soon. Jackson is getting aroung quite well doing his army crawl. He moves slowly, but sometimes when I am working in the kitchen I will turn around and almost trip over him because he crawls over to check out what I am doing. Jackson also does a really cute wave with both hand to say "goodbye" and when I ask him questions he loves to shake his head "no." He has not figured out how to shake his head "yes" or maybe he is like most kids at his age and his favorite word is "no".

Finally, I just want to get on my soapbox and complain about insurance companies. Our insurance will no longer pay for Jackson to have any outpatient therapy (physical, occupational, and speech therapy) because they say that Jackson just has "developemental delays." Therefore, they say that we just need to go through the school system and just have Early On, but that we do not need to have outpatient therapy. This is a problem that most families have when they have a child that is BORN with a disability. If Jackson was not born with his physical impairment, but got it by having an accident the insurance would cover it completely. This seems just wrong to me that there are so many kids that need therapy that cannot get it because that was just how they were born. Thankfully, for us we have Children's Special Health Care for Jackson and we are now in the process of getting them to pay for the therapy. So for right now outpatient therapy is on hold for Jackson, but hopefully it will resume again in about three weeks.

All in all we are doing great and we always so thankful for all of your thoughts and prayers.

Happy Father's Day, Eric!

We love you so much. Thank you for all that you do for us.

From reading bedtime stories to us and using different voices to make us laugh,

to playing games and rolling in the grass,

Having fun with us and warming us when we are cold,

and getting us ready to be a "big hitter" like you,

to just making faces and letting us know how much you love us.

Thanks so much for being the best daddy!

Love, Annika & Jackson