Noah's arching during feedings seems to have gone completely away (thank goodness). I however am already bored with this new diet to assist his tummy and seem to be missing pizza and pastas with red sauce a little more than I had expected to. But I'm willing to take one for the team if it makes Noah all better. Yes "TEAM NOAH"
I think we may be on the road to therapy - finally. Noah's PAR approval from Medicaid has gone through, for physical therapy. We had our evaluation for occupational therapy and got to meet Noah's new occupational therapist, Julie. She seems very knowledgeable and has been doing therapy for 16 years. She said some very encouraging things about Noah, and although she recognizes that we have some work ahead of us, she thinks Noah is giving it his all. She said one of Noah's biggest roadblocks is his lack of head control and has control currently of a 2-3 month old. We just need to work on getting those muscles to strengthen. She also thinks that Noah's lack of being able to roll from tummy to back and back to tummy like he was able to do before could be because his body changed and grew and his head was not prepared to carry the extra body weight. We'll be doing occupational therapy once a week and we're not sure how many times we'll be doing physical therapy yet per week until they evaluate him next week.
There are some great things that I see in Noah. He is genuinely giving his movement all his effort and I can tell he's thinking so very hard on how to get his hands to his mouth, how to grab a toy and get it somewhere. He's trying hard, and grunts like it's so much effort and often gets frustrated because I can tell he wants so very badly to do it, but isn't sure how. I have faith that someday he'll do it.
Noah also had a great visit from his special Bill, his wife Marge, and friend Joanne over the last weekend. They brought him toys and had a sweet little visit with him. Noah just loves Bill. They have an unspoken connection that I love to witness. It's so very nice to have those who have prayed and loved Noah from the very start. I know other special needs mothers have started to feel that friends and family withdraw from situations such as these over time. I see how they feel that way. As you settle into your new life, and make adjustments and come to grips with things, I do see how that happens. Maybe some can't handle the reality of it, maybe they don't want to be bothered with the trials of it, or maybe they simply think that you should be handling things differently even though they've never tried walking a mile in our shoes. I think Chris and I have come through it pretty good. No matter the two of us have become our very best support system, and honestly we haven't had the time to dwell on who's hanging in there with us and who isn't. Yet I do feel bad for those other mothers and families that need that support when there simply isn't any.
Noah is also becoming much more verbal - in his own babble, squawking kind of way. He's also become more attached to me which I'm finding even more difficult to even run to the bathroom during the day! He never takes his eyes off me and if I disappear into another room the broken-hearted cry starts. His daddy is also having troubles getting Noah to sleep at night so I've taken back that duty. Noah is just going through a mommy phase right now and I keep telling Chris it will pass. Thank goodness Noah didn't have a twin, he'd never tolerate not being the center of all attention and the ultimate super star. He's even getting jealous of the dogs. If I feed them or give them attention he'll pucker and pout and start to cry. The therapist says that although his level of attachment may be hard on me now, that it's an excellent sign that Noah is comprehending similar to how other babies do and is displaying some really good signs in that area.
Noah has also become very aware of food. If we're eating he squawks and opens his mouth like a little birdie and grunts. Yesterday I mashed up a banana with my fingers and gave it to him. He gummed it really well and was beyond happy that I let him participate in dinner with us. He loves to eat. His therapist also agreed that soft flow is still very perfect for him because he's fast at it, and there's no need to rock his boat, and that we should stick with only baby food for the first year because Noah could face some big challenges converting over to solids and will need to be monitored for that type of transition.
We just remain so very thankful for how far God has taken little Noah. Seven months ago the doctors didn't even think a fragment of this would happen. I like that Noah's OT has faith in him and says we're going to prove to everyone just what Noah can do. The idea of being in therapy for five or more years is an exhausting thought, but I just have to do what I have to do.
Thank you to all of you that still take the time to read and follow up about Noah. It means so much to us that there are those who still care so very much about him. Please continue to pray that God continues to bless Noah in every way everyday. Believe in the power of prayer always.
Love,
Stacy, Chris & Noah
