3 Years Old

Hello Everyone,

I am so sorry that it has been so long since I last updated you on Tre's condition. He is now 3 years old. He is an amazing little boy that has touched so many hearts. His smile is comforting, his laugh, reassuring, and his life a picture of hope.

He is doing well. I hope that this news will encourage you that are scared or worried and uncertain. Tre is meeting all of his milestones and is doing everything he should be doing. We are seizure free and still no shunt. The only effects that we have found from the Dandy-Walker are excessive Hyperness and lack of sleep. He has a very hard time falling asleep and staying asleep. The doctors will not say that this is because of the Dandy-Walker, but I am almost certain it is. He takes a medicine at night called Clonodine to sleep. This medicine helps him but telling his brain to calm. It does not keep him asleep but it does at least get him to a point where he can fall asleep. He no longer takes naps because we find that will really interfere with his ability to fall asleep. He goes to the Pediatrician on 03/30/2012 for his 3 year check up, and will go back to the Pediatric Neurologist in may. He also sees a Pediatric Neurologist Sleep specialist that is trying to help us with his lack of sleep, but he is more worried about when tre wakes up he gets in our bed. Personally this is not my issue. My issue is when my son wakes up he cannot go to sleep, and that my son cannot fall asleep at night without medication. However they do not see it that way. Doctors are very special at times.

Our First Birthday is Approaching

Tre will be 1 on the 18th of march. Last year at this time if you would have asked me if I thought Tre would be where he is I would have honestly said NO. To think I was so terrified for 9 long months just to be over anxious and have high blood pressure for no reason. Tre is doing great. He is walking now and that is a milestone no one ever thought would come so soon or that he would pick up so well. Tre can say a few words like mama, dada, hot, out, no, stop, ball, shoe, choo choo, Glorianna, Alex, and a few that sound like the others! He loves to pick on his sister and will scream her name until she responds. He is a blessing from GOD. A real blessing, a miracle that has brought so much light into my life and faith that has overwhelmed my family that I honestly don't think I can imagine the day I actually considered aborting the pregnancy. Check out Tre's feature in the Dandy- Walker Alliance Newsletter and keep the faith.

Sorry It has been so long (We are now 9 months old)

Well everyone Tre turned 9 months on 12/18/2009. We went for our 9 month appointment at our pediatrician's office and he weighs a whopping 27 pounds and is 30inches long. His head is also 49cm around. Needless to say Tre is a very big boy! We have also been following up with the Pediatric Neurologist every 2 1/2 months, which our doctor moved away so we have a different one, everything has been going well with the medication. Tre takes Kepra twice a day and has had no more spells. He is also right on target according to development. He can pull himself up and walk along everything he can pull up on, and he has started to finger feed himself. He babbles and says mama and dada. Dada was his first word. He adores his sister and picks at her every chace he gets. Tre had a great frist christmas. I hope that this blog finds everyone well!

We are home from the hospital

So we were released finally after an MRI and EEG. Tre now has a tendency to have seizures and will be taking a medication 2 times a day at least for a year. Here is the best news he has a partial vermis so he has a Dandy-Walker Variant as opposed to a full malformation. This is why he is doing so well developmentally. I Will keep everyone updated but we are very very happy to be home. Thank you for your prayers

Not So Well

So a few days ago tre started having these spells where he would kinda zone out and you couldn't get his attention so we called the doctor and yesterday made a trip to the emergency room just to be admitted. At first they drew his blood and then started an IV for fluids and antibiotics for a possible ear infection that is only added to the situation. Today they hooked him up to a video EEG to watch for Seizures and he has been so uncomfortable because we have this portable pack that has to be within 4 inches to his head, we can't leave our hospital room or even sit on the other side of it. At 330pm est time to day our pediatric neurologist came in to read it's progress what he found was that on the left side of tre's brain it seems that there is indeed a tendency for seizures he didn't have any spells so it was hard to tell 100% because the occurrence it showed was only for a second and nothing else happened. He said if it would have been severe then the erratic nature of the lines would have continued longer. Well he was asleep the whole time so that is scary that he may seize in his sleep. Well then the lady came in to check on him, the one that put all the little wires on his head and while she was here he had an episode for like 10 seconds so she noted the computer then at about 830 he had another one. He is asleep now but not very comfortable. He will have an MRI tomorrow to determine if this is being caused by fluid or just a coincidence. I must say I am sooooooo scared and worried. I surely will not sleep but stay awake to watch my precious little boy. I just don't understand why this is happening now things have been going so well then on top of that we just found out that in 3 months his pediatric neurologist will be moving away. As if trying to find someone well versed in this disease is not bad enough finally you talk to someone who has heard about it and has other patients and then they leave. Please pray for my son. He is really having a hard time right now and only god can help.

Isn't he getting so BIG!!!!

Tre @ 4 1/2 months

Glory and Tre! She is really trying hard to teach him his ABC's