Noah got to see his friend, Shelby as we were leaving physical therapy Wednesday. The two of them remembered each other right away. Maybe he noticed her pink cap, or the way she said his name. Her mother told her to be gentle, as she always must touch Noah, but honestly I don't think Shelby knows anything but gentleness. She held his wrist, looked at him, Noah smiled at her and I told her mom it was nice to see her again, especially since Shelby had been on my mind for sometime. I was relieved to see she was doing well, since I don't know where she is in her treatment and can only hope that she will be healed.
Noah has also learned to snuggle. If he's in a cradle position sleeping he moves his head and body up so he can be on my chest, which requires him to use his head, neck and stomach muscles to do so. Something that he's starting to do in the last three days. It's comforting for the both of us, and it's nice to see him being able to move like that, even if he is doing it in his sleep. He's napping great through the day often an hour to two hours, twice a day, I just wish his blocks during the night were longer. I read an article that was kind of comforting saying that the United States was really one of the only countries that focused on babies sleeping through the night, other countries simply let the baby do as they need. I admit sometimes you feel like you're doing something wrong when everyone else tells you their baby is sleeping beautifully. But this could just be another "Noah time" thing.
It's amazing how Noah can sleep through some of the loudest things; a terrible hail storm, high winds, the television up at good volume, the washer, dryer and dishwasher all going at once, even the doorbell. But he cannot find a way to sleep through the phone ringing, Hollie barking, the creaking of our floors, or the pop our television makes because it's so desperately trying to die and go to TV heaven. His therapist suggested white noise, and it's a great idea, but knowing Noah he'll find that one of the noises that he can't sleep through, because sometimes he just has to be the exception to the rule!
Noah's still only able to sit if I hold his waist, which to his credit is a huge improvement from six weeks ago. I remember taking him to therapy with no head control, he couldn't sit at all unless you put your index fingers behind his head and supported his entire body, and now you can hold him from waist down and he can sit for a minute without flopping over and losing balance. Sometimes I do give into internet searches to find out how many other normal developing babies are not doing something that Noah cannot do either. I know it sounds so silly, especially since I know that Noah is going to develop very differently from the norm, but it brings a sense of comfort in a way that there is still time for Noah to do all these things. Super premature babies are evaluated at a different age rate. For example if a premature baby's actual age is 9 months old, they may say their developmental age is 7 months. Which means that even though they should be doing things a 9 month should be doing, they are not because technically they are at a 7 month old level due to being born 2 months early. Yet they fully expect the premature baby to eventually develop just like any other child. I would love to view Noah's HIE (Hypoxic-Ischemic Encephalopathy) the same way. So even though Noah is a little over 9 months old, he's behind a matter of months. I know very well that may not be the case for Noah and that there may be things Noah may never do. But I just have to keep hoping for the very best.
Noah has also grown increasingly curious about us drinking things and not allowing him to share. So I got brave and let him have some of my water in a cup. He did incredible. Sipped and swallowed like he's done it for months. Now I'm sure in a matter of days I'll hear the monkey sounds he does for food with drinks as well.
Noah is still having a really difficult time bending his elbows to get toys or food to his mouth. His hands are starting to grab things, although it's a weak grab, meaning he gets a hold of something and then it gets let go fairly fast. His arms remain stiff at the elbows and he doesn't seem to know how to get them to bend to his advantage yet.
Noah hasn't been out in since our last grocery trip. It's just too cold and too much illness out there to risk his health. It always makes getting together with family and friends harder, since Noah can't be around those that are ill, and little ones during the winter times that could give him a bug. Chris and I have even devised a plan should either one of get sick what will happen. It might sound so silly to some, or even make us pretty unpopular, but we're just doing the best we can to make sure that Noah doesn't get seizures and go backwards. We don't want to lose all the beautiful progress we've made so far. And as his parents we are responsible for doing the best we can by Noah.
There are days I'll admit where Chris and I feel like we're in this alone. The three of us, doing the best we can. Holding it together when we simply feel like crumbling. We have no option to quit, we cannot give up, we cannot raise the white flag and surrender in our uncertain circumstances, sadness and fear. Although we might want to, that would serve as no example for what Noah is going to need to witness to grow into a strong man and overcome his shortcomings. And just when we think that we're losing the battle and giving into our weakness, God sends an angel to remind us we're going to be okay. The love from strangers that have become like our extended family, they step in at the most perfect moments to remind us that although we may feel alone, we are not.
Love,
Stacy, Chris & Noah
