Hope

So Spencer's ISP was today. I'm kind of bummed out about the results of his Carolina evaluation. I really think they should have asked me all the questions rather than his daycare workers. There is probably a lot he is doing that they don't see. He is behind on most of his areas of development...even in the 3-6 months range on certain things. It's no surprise to me that Spencer is classified as delayed...I still live in the fantasy that despite all Spencer's physical challenges, that he doesn't have any mental disabilities. As he is getting older, and further and further behind, it's beginning to feel like I'm making excuses for his lack of doing certain things. He does have a lot of challenges which influences his development, but how long do we give him to catch up before he is labeled?
I think that it would be devastating for his dad and I to be so bright, but for Spencer to have a mental disability. But then I remember, it doesn't matter. We will still love him and care for him no matter what an IQ test says. But you still hope for your child...
Maybe he will prove everyone wrong. Maybe he will cure cancer, Mito, and AIDS and win a World Peace Prize. Maybe he won't. But his life will hold purpose. I always told myself that no matter his issues, he will be a productive member of society.

And there is the floor....

So Spencer's echo results weren't great. He has a PFO and likely ASD, which will most likely require surgery. While it's not open heart surgery, it's still heart surgery, and it scares the hell out of me (which little does now a days). We have a cardio consult in the works, so we'll see. Funny thing is, w were told while he was in the NICU and had two echos that his ASD had resolved itself. On a brighter note, all his chambers are the right size (once upon a time this was a concern).
Other than that, high risk clinic was pretty uneventful. They gave us some Vital Jr to try as a backup food for when he is inpatient. I still might do his blend while he is in for his cleft palate repair...not too sure yet. Vital Jr still has soy and milk in it, but they assure me it will be ok (I seriously doubt it). It's nice to have a backup in case there is a power outage or anything. Now I just have to keep his dad away from it (his new favorite drink is pediasure).
I asked about having an allergy test done and they said it's better to do it when he's older. Since I can tell what he can't digest, I have a feeling for what he can eat and what he can't and it's better than labeling him with certain allergies. I think I'm just going to get my peds to do a referral anyhow, just for my own peace of mind. We can always repeat when he is older.
Syringes are also like gold at CCHMC. Julie, one of the high risk nurses, is working on getting us even more. She snagged me one earlier, apologetic she couldn't get more. Have I mentioned lately how much I love the nurses at high risk clinic?
It was our last visit with Dr. Jambula. It was also our last visit with Spencer's audiologist's intern, who was super nice. That time of year I guess....

Date for Surgery

We have a date for Spencer's cleft palate and hypospadius repair....August 12th! It's a Friday. I'm already worried about it! Not exactly sure how we are going to do his blenderized diet while he is in patient....

Go, Baby, Go!

Wow! I haven't updated in a while. Spencer is doing great! We have graduated to wearing his braces to 12 hours a day...which for him just means at nights since he is an awesome sleeper. He is starting to attempt to stand on his own and nearly has the getting into a sitting position thing down. I worry about his unaffected leg when he stands. It seems to almost bow a little bit. I will bring it up with his ortho when we go back the next time.
Big changes are in store for us. We are planning to move close to Huntington, WV. His dad and I have decided to live together again, although we are not together. Confusing, I know. We're working on being friends and good parents and then seeing if anything romantic develops. So far, so good. We will be close to family, yet still close enough to Cincinnati Childrens for certain services.
Spencer is getting his cleft palate and hypospdias repaired soon. We are waiting for a phone call from scheduling. These will be surgeries 6 and 7. We have also decided to repair his ptosis, which seems to be getting worse as he gets older. It will be done in two parts, the first will take place sometime this year and the second when he is 7.
We are in the process of switching Spencer to a blenderized diet. He has been having a lot of volume issues so this way we can give him more calories in a smaller volume. I'm pretty excited about it. No more Pediasure and his reflux has been soooo much better.