Well, first of all and most importantly, Ian is doing beautifully! I could hold him and play with him for hours. I tear up when I look at him. The doctor's words "I don't know why bad things happen to good people," came to my mind this morning. I know he didn't mean Ian but Ian's DW, but I can't help but cry when I think of that horrible time. He is absolutely the best thing that has ever happened to me. I have learned so much from him already.

Ally, Ian, and I met my neighbor and her grandkids in the city yesterday to visit the history museum. It was a good time and I was proud of myself for venturing there on my own with the kiddos! Pathetic, I know! Anyway on our way out of the city, I noticed a sign for a school for blind children. I guess I just made a mental note of that. Also, I believe in an earlier post I had mentioned that I thought Ian was favoring turning his head to the right. Keep these in mind as you continue reading. It's the irony of my life. Pretty much what makes me crazy.

I had a bit of an emotional setback yesterday. Through early intervention, I have joined a group called Parent to Parent in which parents are matched according to children's conditions to receive and provide support for one another. A very nice mom called me yesterday to offer support. She has a little boy who is 7 years old with DW. She was so sweet to share her son's world with me. She knew a lot about DW and especially vision. Her son is visually impaired. He has a condition in which he sees, but his brain can't process the images. He also has very small optic nerves. They used to live on the other side of the state, but they moved here for their son to attend the school for blind children here on our side of the state. What are the chances that the day I notice this school, I learn of a child with DW who attends there? I asked her how they noticed that his vision was affected. She told me his grandmother noticed that he only looked to the right. She found a neuro opthamologist who could read her sons MRI, and the condition was identified. She was a teacher and decided to go back to school for vision support therapy, and she now works for Early Intervention. I told her that I used to think that Ian preferred his right side but that now he does look to both sides. She asked if he was making eye contact with me, etc. He is, so that's good. Her son is also nonverbal,suffers seizures, and isn't walking independently yet, but he's close! Please pray for T. He sounds like an amazing little guy that has had to face more challenges in his 7 years than many of us will face in our lifetimes. Because she is local, I asked her if she knew of our pediatric neurologist. She said many of her patients see him. I didn't get a good vibe at all. She said he is brutally honest, and that it sounds like we have had the most positive experience with him. :-( I do still love him, and his experience and knowledge of the brain can't be doubted, so I'm still thanking God for him. It is easy to love someone who tells you good things though! I explained the condition of Ian's brain to her and she was encouraging. I asked how vision impairments are tied to DW and she explained that it takes 40% of the brain to process a visual image so anytime the brain is compromised, vision issues can happen. I guess it's the same with hearing.

I have to admit I have been living on a high cloud since Ian was born, and maybe all of this into bring me back down and prepare me once again for the unknown. I have met so many strong and faith filled parents and amazing kids. Life is fragile and precious. Thanks for listening.

Early Intervention & Neurology Appointment

Early Intervention folks were here on Monday to evaluate Ian. He was too cute during the evaluation. Megan asked how he likes tummy time; he loves it! He was holding his head up and turning it from side to side and eventually rolled over! He qualifies for service no matter what because of his diagnosis, but they of course needed to acquire scores. He is grasping things like my hair and he tries to swat at toys (with a lot of effort!). He will also hold things when placed in his hand and put them to his mouth, but he wouldn't do this while they were here, so he didn't get any points for fine motor skills. It isn't a concern though. He tracks beautifully with his eyes and he definitely hears sounds. He seems to favor turning his head to the right, so we are just going to monitor his hearing. We are going to get a full audiology screening done soon. He is starting to smile socially and babble a little. He pushes up with his arms and bears weight on his legs. I couldn't be happier at this point. We are starting with physical therapy and specialized therapy each every other week though just to monitor his development.

We saw a different pediatric neurologist on Tuesday. She reviewed his MRI images and wanted us to understand that Ian has Dandy Walker Malformation, not Dandy Walker Variant. She said it's all very technical and showed us what makes it DWM, but honestly I'm still so confused. She also mentioned that he has very little vermis development but that the rest of his brain looks completely normal. UGH a little. I did get sick to my stomach and fought off tears, but I kept reminding myself that he is doing great. She wasn't doom and gloom and she kind of seemed confused as to why we were even there since he is doing so well. In her opinion, he will never need surgical intervention (a shunt). She said they can tell by the anatomy who will be "troublemakers" and who won't. But then she also showed me where exactly to watch for bulging in his head. She agrees that it will be a day by day thing as far as development goes, but she advised us not to worry too much. She considers it a moderate Dandy Walker Malformation, and many of people with a moderate DWM do quite well.

Ian has an appointment with Dr. Painter on September 21. That will be a little late for his 3rd month check-up, but we should be good.

Ian is currently in the 95 percentile for length, 90 percentile for weight and 50 percentile for head circumference. AWESOME!

I have heard that Ian is being removed from some church prayer lists. That's fine, but our little guy is going to need special prayers for a long long time. Thank you to all of you for thinking of him. And, if you don't mind, pray, pray, pray!

Update

I promise to update by the end of the week. Nothing really new, but I guess some changes in terminology and another doc's opinion. I'm off to bed, but I didn't want anyone worried that we were at the hospital or something. Thank you God for our Ian.