This is him in his little bumbo chair, which he never really liked to sit in (probably because he couldn't), but look how he is sitting up straight. He can't hold this position for very long, but he is getting much better at controlling his head and trunk. I really think he will be able to sit by himself someday!
In OT we have started really concentrating on Finn's eating habits. He continues to only eat 3rd and 4th phase foods in addition to some table foods, if they are soft enough. He is not very good at chewing the harder foods. Its like he wants to mash everything with his tongue...which is hard to do with solid foods. We are also trying to get him to drink from a cup. No sippy cup for him we are going straight to a cup! Finn's issue with cup drinking is that he doesn't close his mouth...like ever! So we have tried giving him thicker liquids, like smoothies, to help him get the hang of it. He is starting to get better, but he really struggles with the closing and sucking aspect of cup drinking. I think we will get there eventually...Finn just takes a little longer to understand what he needs to do. But I am really anxious to get him off this bottle and formula. Yes, Finn still drinks his formula. He just loves it so. I am hesitant about really weening him off of it because he has always struggled with gaining weight. And I know he is not eating enough solids to maintain his weight. We met with a dietitian last month and she gave us a bunch of ideas on how to add extra calories to his diet to get him gaining a little bit more, and hopefully be able to slowly decrease his formula intake. For example, add butter to all of his solid food meals. Simple and easy and will add an extra 100 calories a day. Great...now I just need to go out and buy dairy and soy free butter...
Right now Finn is getting therapy 2 times a week, but that will soon increase to 3 maybe 4 times a week. We are going to start seeing a private OT (right now his OT comes to our house from our Help Me Grow agency) but he needs more than just once a week OT. I am just waiting for them to have an opening to fit Finn in. Also, Finn will be starting speech therapy next week. He will be a busy little boy, but it will be great for him. I really think we will be seeing big changes in him with all this extra help!
Switching gears a little bit....
Last month Finn got 8 Botox injections in his arms. It was pretty painful as a parent to watch the doctor inject your baby 8 times with a needle, but it was quick and I really think it was totally worth it. His hands and arms feel amazing! Especially his right hand. It is like always open now. His left, which is his dominant hand, still is tight, but not at all what it used to be. With daily stretches, I can get his left hand pretty loose, but it's not where we were hoping it would be. But like I said I have noticed HUGE changes in his ability to play with his toys. Before Finn could only really press buttons or play with his toys with his left hand fisted. But now look at it!
That is so good to see! Finn will go back to get another round of Botox at the end of May and they are talking about putting a little bit more into that left hand, and I think that's a good idea. But until then we will continue stretching and wearing our hand splints.
Moving on...
Last month we ordered a bunch of adaptive equipment for Finn. It was a very special day, one I will never forget. If you ever have to order adaptive equipment for your kid in Columbus, you first have to meet with an equipments representative. They will take you thru their warehouse and show you everything they have to offer your kid, and give you their input on what they think will be a good fit for your kid. But that's not the end of it. You have to get approval from your doctor before you can go ahead and start ordering all the stuff you want. Finn and I were meeting with a new doctor, one we had never met before, and she had a reputation. I heard from Finn's therapist and even the equipments rep about this particular doctor we were meeting with and how she has the reputation of being kind of cold and very opinionated. I wasn't too worried though. Over the past 21 months I have met with a ton of different specialists and doctors that I am not intimidated by anyone. Well on the day we finally met with this particular doctor, she came in and introduced herself and just immediately starting messing around with Finn (evaluating his tone and muscle control) after that she went straight to her computer and started reading his chart. I could tell why people would describe her as 'cold'. She asked me about Finn's birth story, which I told her everything. I mentioned that he had a MRI done and she immediately wanted to see it. These were my exact words to her 'be prepared to be amazed'. The first words out of her mouth were 'oh my God'. She couldn't believe what his MRI scan showed. After she saw that she totally softened up. She told me how 'impressed' she was with Finn and how he had such a great range of motion considering what he has to work with. She liked to see how much head control he had, and she also made a point to look me in the eye and tell me how great of a job I was doing as a parent. Now how could I not fall in love with a doctor who is so impressed by my little guy and tell me how awesome I am?! I guess it just takes a really cute, sweet boy for her to let her guard down. It is sad that maybe other families don't get to see that side of her. If that wasn't enough to get me all misty eyed, Finn was very taken with the equipments rep at this appointment. Finn was sitting in his wheelchair 'talking' to me when the Rep went to adjust something on the wheelchair. Finn turned his head and stretched out his arm and immediately started petting and stroking the Rep's face. It was so sweet, and very unexpected since the Rep didn't say anything and Finn didn't have his glasses on. Just another reason why I think Finn sees more than the doctors think. Anyway, Finn will be getting a bath seat, This stroller/wheelchair
And this walker
I am very excited to get all this stuff for him. They should be arriving in time for summer. I am very thankful for the assistance program we are covered under so that we will not have to pay for any of these items, which would easily be like $10,000.
Finn is a busy boy these days, but he continues to do everything we ask with a smile on his face.
