Once we got home he bounced back quickly and put on some weight. He has switched to nursing, which I wasn't sure would ever be in the cards for him. Many babies with Down syndrome have low muscle tone, and it makes breastfeeding harder for them. I didn't even introduce it until he was two months old, and I think that played a role in his success. He was a little bigger and a little stronger. The stress of feeding melted away once we ditched the bottles. Matthew is in charge of how much he eats, not the doctors in Kansas City. As long as he keeps gaining weight, we don't need to worry. We still weigh him every night, and there are still feeding frustrations, but nothing like it was a month ago. It used to feel like every feeding was do or die. We have made major progress on the feeding front, and I am so grateful for that.
(In Kansas City at our favorite spot, Taco Republic)
Four days after we got back from Colorado, we headed to Kansas City for his first appointment at the Down syndrome clinic. (Yes that's right, 32 hours in the car over a two week period). We met with the medical director of the clinic, who was so nice and will be wonderful resource to us. She specializes in Down syndrome, so she knows all the latest research and what is best for kiddos with Down syndrome. She talked to us about what we need to keep an eye out for, health wise, with Matthew. There is a list a mile long of heath problems that are more common in people with Down syndrome. It can be overwhelming, so it is nice to have somebody who can help put all that in perspective. She let us know what we need to have checked out and when (hearing tests, vision screening, blood work, etc). He will go back when he turns one and then yearly after that. It is so nice to take him to a place where Down syndrome is the norm.
Matthew began working with with SoonerStart, which is an early intervention program that helps families of children with developmental delays and disabilities. A child development specialist will come to our house every two weeks. They will also provide various therapists as needed. Our girl is named Katy and she has been wonderful. She observes Matthew and tells me things we can be working on to keep him developing to the best of his ability. So far she has been very impressed with him. It is another great resource for us, as parents, to have somebody helping us along the way. Matthew has aced all his homework so far, and we hope he keeps it up.
We also attended our first Down Syndrome Association of Tulsa meeting. (I told you we had been busy). It was a new parent breakfast, for families with kiddos under three years old. We met lots of new families and listened to two presentations. We have heard wonderful things about the DSAT community, and we are excited to get more involved as we slowly get out of the newborn/NICU fog. Everybody there was so nice, and there were some super cute little ones as well.
Like any new parent, we have good days and bad days. Thankfully the good days are outnumbering the bad. Matthew is still on oxygen at night and during naps. I absolutely can't wait for the day he doesn't need it anymore and I can see his beautiful face without anything on it. But for now, it is helping him to grow by allowing him to not work so hard to oxygenate his blood. We recently switched to our local pediatrician, Dr. Daley, being in charge of his oxygen, and he is much more relaxed about it than the doctors in Kansas City. He said to use it if he needs it, and to trust my instincts. When I was feeling frustrated the other night J.P. assured me that he won't be on it forever. He is getting bigger and stronger every day, and some day soon I will get to take those pesky oxygen stickers off for good.
Now that I have covered all the nitty-gritty, let me tell you some of the fun stuff about Matthew! He tipped the scale at TEN pounds today! It's crazy to think that he is three months old and still smaller than some babies when they are born. He is super long and skinny, like his Daddy. He smiles at everyone he meets, and can be a little flirty with the ladies. He has giggled a couple times when I make him dance. He loves to watch his brothers and is getting more squirmy by the day. He is very close to being able to roll over, which I'm not so sure I am ready for. He doesn't love tummy time, but he is getting his head held higher every day. He reaches for and grabs toys hanging on his playmat. We still wake him up to feed him in the middle of the night, but he is usually a pretty good sleeper. He LOVES to be swaddled up tight, and even smiles when he knows I am about to wrap him up. He is so loved, and we are happy to be enjoying him more and more every day (and worrying less.)
