Happy New Year

Happy New Year!!!!

It has been such a long time since my last post. I have been busy enjoying my VERY active miracle baby. So I am going to try to catch everyone up on what has been going on the last few months.

So since my last post we have had 3 MRI's (July, September, and December) all showed that his cyst and ventricles were stable!!! Praise the Lord!!! After our visit in December our neurosurgeon told us that he was comfortable with us waiting 6 months until we do another scan. That was so nice to hear. Hopefully, it will cut down on the stress and anxiety. There is nothing worse than watching your child in pain from the IV and the meds that sedate him. He also told us that he is hoping that by the time Tommy is 2 or 3 that his head size will be on the "normal" growth chart. I know all of the prayers that our Tommy receives have worked and we are so thankful for them all. We could not have gotten this far without the love and support from our family, friends, church, and people who don't even know us. I am also so thankful for the lifetime bond I have made with other Dandy Walker moms. I love them and their children very much. It amazes me how much we all lean on each other for support and guidance and we have never even met each other.

Baby Tommy has made so much progress since my last post. He is now saying mama, dada, nana, and bye. He is always talking and copying the sounds that we make. He is very active and determined (he gets this from his Daddy). He started army crawling in September and still uses that as his fastest mode of transportation. He can crawl but only does that when he wants something up high and he LOVES to cruise around furniture and walk/run all over the house when someone is holding his hands. We are going to be in BIG trouble when he begins to walk.

We just got home from the beach today and while we were there Tommy decided that he did not want to eat baby food any more and that he could feed himself. So he has been eating lots of meat sticks, green beans, and bananas. I am so thankful that he wants to do all of these things.

I know this post is all over the place and I apologize for not keeping up with it. I am going to try my best to update more frequently.

I hope everyone had a great holiday and has a wonderful 2011. We are praying for many more miracles this year!!!

On the move!

We have spent the last week at the beach. We had a very relaxing time even though we didn't spend any time on the beach except for a quick photo op.

Baby Tommy has learned to roll over from back to tummy!!!! Since learning this he has not slowed down!!! Diaper changes and getting dressed are no longer an easy task. He also wants to be held sitting up and will try his hardest while he is buckled into his car seat to sit up like he is trying to get out of his seat. I am so thankful that he is doing these things. Before he was born we were not sure of what he would be capable of. As of right now he wants to get into everything and move constantly. He gets so frustrated when he is on his tummy that he can't crawl. I have a feeling that once he learns to crawl there will be no stopping him. I can't wait!!!!!

Tommy has also become quite the laugher and talker. He always has something to say. He has the sweetest smile. It melts my heart every time he looks up at and gives me a huge grin. It makes everything we have gone through worth it!!

We go back to therapy this Wednesday and I cannot wait to show Ms. Debbie everything that he can do. She is going to be so proud!!

Thank you all for your prayers and support.
Holli

Our Busy Week

This week has been very busy with doctor's appointments. We started Tuesday with PT. PT is going great!! I love his therapist she has been such a huge support and resource for Baby T. She told me that from what she could tell she thought he would NOT be severe. Praise God!!!!

Wednesday he had a cranial ultrasound. The Ped. Radiologist seems to think that if the ventricles and cyst have changed they were only slightly larger. I was relieved to hear that but every time we have a scan I am always hoping and praying that they will tell us that he is healed. I will always have hope for that.

Thursday we were off to Atlanta to meet with his Neurosurgeon and Neurologist. The neurosurgeon wants us to have a MRI next month, June 17, because his head size is off the charts but he is not showing any other signs of developing Hydro so that is why he didn't feel the need to do a scan that day. I always love going to see Dr. Boydston because he is such an awesome doctor and person. He is very loving to both Tommy and us. I know that he will always do what is best for our precious baby. After we left there we went to the Neurologist. Once we got into our room they hooked Tommy up to 21 probes for his EEG. He did not like the nurse putting all of those on his head. It was so sad seeing him cry and me not being able to comfort him. We first thought he would have to have the probes on for 45 minutes but they were able to get what they needed fairly quickly. After the EEG Dr. Personality came to read it and said that it was uneventful and that everything looked normal!!!!!!! There is nothing like hearing everything is NORMAL!! He then told us he didn't know why he was shaking his head and that it could be Sandifer's Syndrome (has to do with reflux) or something else which pretty much means we bore him and that is why he does that.

Next Tuesday we will have our 4 month appointment(with shots) and meet with the GI doctor and then OFF TO THE BEACH!!!!!!! I am hoping that I will be able to relax there but something tells me that I will be more worried out of town than at home.

Thank you for the support and prayers. You all have no idea how much it means. I know that prayer is how we have gotten through this and I believe that the reason why Tommy is doing so good is because of all the prayers that have been said for him.
Proud Mommy,
Holli

Update

I have not posted in a while so I figured I would give everyone an update as to what has been going on in our life. Baby T is still sleeping through the night except when he wakes for his pacifier. He seems to be a much happier baby which makes for a much happier mommy. He loves to smile, talk, and laugh to anyone who will talk back to him. He is such a loving baby and loves to cuddle.
On April 18th he got baptised. Thank goodness the preacher did it at the beginning of church because he was very sleepy. After he got baptised we went to my moms house and had a lunch with our family and close friends. Baby T was a bit overwhelmed at all of the people so he was very attached to Tommy and I.
He has had a cough since taking him to church but I think it is just his reflux which is still pretty bad. We took him on May 14th to have an Upper GI. He only ate two ounces of the Barium. The radiologist told us that everything looked good and was doing what is was supposed to be doing and that he saw some mild reflux. My thoughts were "You should come and try to feed him and then tell me it's mild!" So we are now waiting on an appointment with Dr. Isreal who is a ped. gastero doctor.
On Thursday May 13th we went to Atlanta to meet with a ped. neurologist. Tommy has been shaking his head no again pretty constant so we met with him to see if he knew why he was doing that. He said it may be Sandifier's Syndrome which has to do with reflux. Did I mention that the neurologist has the personality of a brick wall. He was not very talkative and was not offering up any information. He told us to come back next Thursday for a EEG and to bring a recording of Tommy shaking his head. Of course as soon as we left his office Tommy woke up and starting shaking his head again.
This next week May 17-21 we have physical therapy (which he is doing great at) on Tuesday, a cranial ultrasound on Wednesday(praying for stable ventricles and for him to say he is healed), and on Thursday we go back to Atlanta to meet with the neurosurgeon to go over the ultrasound and the we go over to the neurologist for the EEG. Then next Tuesday we have shots for his four month check up. I know Baby T will do get with everything because he is much stronger than his Daddy and I.
On the bright side after all of these appointments we will be going to the beach for a very relaxing and much needed VACATION!!!!!!
I will keep everyone updated after all of our appointments. Thank you for keeping Tommy in your prayers.

Good Times

I know I have been updating only about the Dandy Walker things that have been going on in our life so I feel like we need some positive. In March 20 Tommy rolled over from tummy to back twice!!!! I was lucky enough to catch it on video. But of course he has only done it once since then. He is such an angel baby and a definite Mommas boy (which I love)!!
Another plus is that on April 2 he slept through the night for the first time and has been doing it ever since. Big Tommy and I are so glad to be getting some sleep. Although he refuses to sleep in his bed during the day. So he ends up having someone hold him. I have been trying to put him down in his crib but after a few minutes he wakes up and realizes that no one is holding him and he just can't handle that.
We are starting to get his colic and reflux under control, I think, so hopefully he will be a much happier baby in the near future (fingers crossed).
He is an absolute miracle and I am so luck to be his Mommy. He has made me such a better person and I am forever grateful to him for doing that.

Scared

This past week I have noticed a fluid spot on the back of Tommy's head. A couple of days later he got another one on top of his head. On Friday we went to see our pediatrician. She was not sure what it was but thinks it may be CSF (cerebral spinal fluid). She tried to get in touch with our neurosurgeon but he was in surgery. The thing that is so frustrating about Dandy Walker is that no one really knows much about it.
On Saturday afternoon our pediatrician called and talked to the neurosurgeon that was on call. The neurosurgeon seems to think that it is CSF and that may be leaking through his sutures(spaces that haven't fused together in the skull). If that is the case Tommy may be developing Hydrocephalus and the reason he doesn't have any symptoms just yet is because the leaking of the fluid is not causing pressure on his brain. So as of right now the plan is to go to Atlanta next week and meet with our neurosurgeon and get another ultrasound done. On Monday we have an appointment with our neurologist. This will be the first time he has met us so I am hoping he will have some answers for us.
Needless to say we are on pins a needles and feel helpless. I am so scared of what our baby will have to go through and hate that there is nothing we can do to make it go away. It is not fair for a child to have to go through so many procedures and so much pain.
Please continue to pray for Tommy and please pray that he has not and will not develop Hydrocephalus.
Thank you all for your love and support. We are so lucky to have such good family and friends.

Dandy Walker/ Hydrocephalus Awareness month

Governor Purdue has approved our request to make May 2010 Dandy Walker/ Hydrocephalus Awareness month!!! For more information on Dandy Walker visit www.dandy-walker.org.