Those cute, chubby cheeks... not so much!

Max finally had his appointment with the neonatal developmental psychologist today. We've had to cancel twice, because of his ear infection. This appointment included an evaluation and testing, so he needed to be on top of his game.

It was not an "everything is fantastic and he's great" appointment. But we were not surprised by anything either.

Max's speech and eating are delayed. We know this... we see it everyday and we wanted to ask about it. Now we know more of why....

He has "low muscle tone and fat deposits in his cheeks." It's caused in large part by the lipids, which he received as part of his IV nutrition for the 3+ months when he couldn't eat. Now those cute chubby cheeks are keeping him from chewing and speaking properly. So we're being referred to a speech and eating therapist.

Because of the delay, it's impossible to tell if he can comprehend at the appropriate level. He's not where he should be. The doctor would put out a book, ball and cup and ask Max to pick up the cup. Max can't do that. He'll pick up what he wants, but doesn't follow commands like this. Much like he doesn't way bye bye or play peek a boo. He will kiss if you smooch at him, but that's about it.

It could simply be because he can't speak and to say the sound helps to associate it with an object or action. But it could also be that he has permanent damage from his brain bleed at birth, that's the scariest part. Because he is probably 6-8 months delayed in speech and feeding, it's just too early to tell what's what at this point.

It explains why he only eats crunchy foods, because he can hear and feel them. It explains why he stuffs his cheeks full, like a chipmunk, because he can feel the food and get the sensation of chewing up something. It also explains why he still drinks from a bottle, his cheeks and tongue are not strong enough for a sippee or straw. So we keep working.

We hope and pray everyday that Max will reach his full potential and live a happy, productive life someday. With the physical, we knew that he might not crawl, or might not walk, but we knew there would always be options to help him work around those difficulties. We were prepared for a walker or for a wheelchair, but at this point, the doctor feels his physical development is going well. She expects him to walk on his own in the next couple of months.

The cognitive development is much scarier. It's harder to tell what is happening, and when it's happening and why... but we know that some brain damage won't be reversible. We know that he's more likely to be autistic or have other learning delays. We just continue to work with him and the therapists to help him do the best he can and we take in one day at a time.

We'll love him the same no matter what, we just want the best for him and we want to see him surpass all the expectations people have for him.

I think the best part of the visit, was when the doctor was working with Max on problem solving. When he couldn't figure something out, he would turn to his brother and pat Alex on the arm, obviously looking for help. Or when I asked where Alex was, it was the one word association that he made right away. He would physically turn around and lean over my shoulder to see Alex standing behind me. It was amazing to see how he knows and relies on his big brother. It was so sweet to see how already, he knows that Alex, and any of us will help with whatever he needs in life. We are working to help him, as well as giving him the tools to help himself. We are so blessed to have him in our family.