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!