Jimmie Recently had a visit with his developmental Peadiatrician Dr. H. I was expecting him to not be pleased with how skinny Jimmie is. Dr. H was not happy about his weight but was very pleased with his variety of diet and how much he eats. He was also pleased at how much he has grown in head circumference and height, He felt like he had made a huge cognitive jump and is not worried about Jimmie getting enough nutrition to feed his brain. He also said he seems to be "caught up" (minus his weight and speech) A huge relief for me. I went in to the appointment feeling like it was D-day.
However he is very concerned with his lack of speech. His language is very good, i.e. he understands pretty much everything we say. It is looking very much like apraxia (the same diagnoses that Amber's daughter McKenna has) Interestingly enough it is not something related to his prematurity. He communicates very well using signs, he has about 50 . He has about 20 words/sounds. but the average person could understand maybe 2 of them. We are moving to speech therapy two times a week. We have 1 hour session, he is not yet two adjusted so his attention span is short, he concentrates and works hard for 10 min out of the hour. I work all day with him on sounds and words. It is just really hard to see him struggle for every sound. He wants to communicate and has a lot to say. In the long run will be OK, but part of me wants to say "give him a break breathing, eating, and talking should not be this hard" I know that we are so blessed at how well he is doing and how much worse it could be.
The big change: Dr. H. wants me to have him involved with peer groups. Jimmie's therapists have been pushing me to do this for a few months now. They think it would really help his verbal skills. I am really trying to let go and not worry about him getting sick. Dr. H said he needs to get sick and build up his immune system. I know this but I really hate it when he is sick ugh. So he will start Sunday School at the end of May (two adjusted) I will try and do play dates with cousins and such. I could really use prayer to let go.
So all and all very good, Dr. H wants to see him in December to start talking about when he turns 3 (gulp) we will lose all of our in home therapist and have to transition to the school district, or private therapy.
PS Amber has managed to stay out of the hospital for 3 weeks. She is on the Zofran pump 24 hrs a day (with a few min off to change the site) She is having some anxiety for the next few weeks. They will try weaning her from the pump. If that doesn't work it is assumed she will stay on it for the whole pregnancy. She also has the anatomical ultra sound in a few weeks. Given my history with it she is anxious about that as well. She is having pain in the needle sites around her belly button she is now changing them every 12 hours and it is helping. She is gaining weight just very slowly (sounds like someone else?) She is doing better at staying hydrated and able to eat but is still experiencing extreme fatigue. Her Iron levels are low but they don't want to supplement right now. The supplements can cause stomach upset, she had this side effect from them in the past. The low levels are contributing to the fatigue. Over all she is better.
PPS Jimmie and Amber and her kids are sick fever colds etc.. Pray for them.