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

Not the Best Blogger but here is an update!

So....they have scheduled Tre's MRI....I am scared I do admit. It scares me that they have to sedate him for the MRI not the procedure itself. It also scares me to think they may have something negative to say when everything has been so positive. The MRI will be September 23, 2009 @ 815am. We have to be at the hospital by 7am for them to start the sedation.

On another note tre is still doing very well. They have started us working with him on the floor more because he was having a bit of a hard time rolling over. They think that his brain has remapped the idea for rolling over and he arches. He rolls fine from belly to back but not quite that good from back to belly, but he is getting much better. Basically we have to give him lots and lots more time on his tummy while he is awake. The problem is he thinks his back is for playing and belly is for sleeping! When he tries to roll, or when you have him sitting or standing he arches his back and flings his arms back. Most babies do this, but the difference is their brains are able to say that is wrong and uncoordinated. That is why they think his brain is mapping the idea it is ok, so we have to work with him to teach him it is not. We are all working on it! He doesn't mumble any actual constantents yet or make mama dada noises. That is a bit behind too but he is very vocal and has began squealing! I am sure the mama and dada's are soon to come.

Things are going great. Everyday I watch him and I think how much of a miracle he is. I love him more than life itself. Tre is playing with his toys and acting like a very normal 4 month little boy. We will have an MRI in September and I keep having this dream that they tell me everyone made a big mistake. I mean really there seems to be nothing wrong right now and yes we are so blessed, but at the same time it is so scary because you wonder if the bad will ever really hit....

He is now 4 months old!

Tre is now 4 months old. We just saw the neurologist again and he just had his 4 month visit at the Pediatricians office. he weighs 20lbs and is 26 1/2 in long. I can't believe it. They say he is right in line with "normal" 4 month old babies. We will have an MRI in Sept. when he is 6 months old, but for now we pray and thank god everyday that our little boy is doing well!

Tre's Story

It all began when I was only 18weeks pregnant. My AFB test that they do at 15weeks came back abnormal for a possible Neural tube defect. We were sent for a special HD ultrasound and while the Doctor was checking my babies spine he noticed that there was a cyst on my sons brain that was due to dandy walker. At the time they did an amnio to make sure that there were not other abnormalities. During this two week wait we were so overwhelmed. We have a 2 year old daughter that is fine so we had no idea why this was happening. We dealt with trying to make a decision about whether to keep our son our not. The prognosis for a dandy walker baby is so wide in variety that we had no idea what to expect and what made it worse is the doctors had no idea other. They couldn't answer any questions and were no help. All they could keep saying was we would see when he was born. This was the worst feeling ever. I couldn't understand why they couldn't answer any questions and why no one seemed to want to help. Then he was born on the morning of 03/18/09 at 730am. This was the best day of my life. At birth they did a CT scan, renal ultrasound, and c-spine x ray. All came back normal however it did indicate the baby had a full dandy-walker malformation. Tre is 3months old right now will be turning 4months on 07/18/09 and we will be having a MRI in September when he is 6 months. So far he has had 2 appointments with the neurologist and 3 appointments with the pediatricians. He has no problems right now. We also are involved with the Early Intervention Team in Charlotte. This is a great program. They come to the home once a month and they monitor his development. If he ever needs any type of therapy they will help arrange that also they help arrange applying for other benefits like child care, and medical. I would strongly urge anyone to contact them when you find out to get the ball rolling as a lot of these paper programs require a long process.

Attached is a beautiful picture of my son at 3 months.

What is Dandy - Walker Malformation

Like everyone else the explination is the same medically.
Dandy-Walker Syndrome is a congenital brain malformation involving the cerebellum (an area at the back of the brain that controls movement) and the fluid-filled spaces around it. The key features of this syndrome are an enlargement of the fourth ventricle (a small channel that allows fluid to flow freely between the upper and lower areas of the brain and spinal cord), a partial or complete absence of the area of the brain between the two cerebellar hemispheres (cerebellar vermis), and cyst formation near the internal base of the skull. An increase in the size of the fluid spaces surrounding the brain as well as an increase in pressure may also be present.
The syndrome can appear dramatically or develop unnoticed. Symptoms, which often occur in early infancy, include slow motor development and progressive enlargement of the skull. In older children, symptoms of increased intracranial pressure such as irritability, vomiting, and convulsions, and signs of cerebellar dysfunction such as unsteadiness, lack of muscle coordination, or jerky movements of the eyes may occur. Other symptoms include increased head circumference, bulging at the back of the skull, problems with the nerves that control the eyes, face and neck, and abnormal breathing patterns.
Dandy-Walker Syndrome is frequently associated with disorders of other areas of the central nervous system, including absence of the area made up of nerve fibers connecting the two cerebral hemispheres (corpus callosum) and malformations of the heart, face, limbs, fingers and toes......
Not much help right.

Why am I Blogging?

In all honesty I truly felt that when I found out that my son was going to be born with dandy walker that when I went home to look for things on the Internet all I could find was negative information. I was scared and had no idea what to expect. No one could answer my questions and all I could do was read horrible things that may occur to my unborn son. So I want to be a voice of hope. A helping hand to those that may just want to vent or ask questions. So i am going to start a Dandy Walker Blog for those that feel the same way I did. I plan on showing pictures of my son and his developments and hopefully create a place where we can feel comfortable and gain knowledge together. Below I have created a specific google search engine for only Dandy - Walker please feel free to use it and we can talk about whatever information you may find! This first picture is of my son the Day he was born. Mind you the prognosis was not good so we did not know what to expect. The doctors told us he may not be alive, or eat, or cry, or breathe on his own. But this beautiful Baby Boy Verdel Ratliff III was born on 03/18/09 @ 730am and was screaming as loud as you could imagine and ate just fine!