Thursday, December 4, 2008

Thankful for our miracle!


Our thanksgiving was small with our immediate families but it was such a blessing to all be together at home!

Jonathan has so much phlegm, its probably whats left of the pneumonia his o2 sat was 97 but he is not eating his 30 ozs hes down about 25 ozs but he is starting to pick up again. We are trying different foods he seems to like yogurt mixed with his cereal and we just tried vanilla pudding and he LOVES it (thanks Jamie)!! We are planning to go to Cincinnati feeding clinic they just called today and I need to set up an appointment, its outpatient so that's nice not to have to be stuck in a hospital! I just want to get rid of this tube he hates it I hate it everybody hates it but we have to keep him pumped, he is 14 lbs now he actually has some meat on those thighs:)

The greatest news we have is that Jonathan is now the happiest baby around no more crying all day, hes taking a 2 hour nap (usually) and sleeping 8 to 10 hours at night!!!! He is excelling at therapy now too! We can put him in a bumbo seat and he trys so hard to keep that noggin up and he does for about a minute then it falls but he is able to pick it back up, its so great, he is now really reaching for things not really a smooth reach its kind of jerky but he is reaching, we can put him on his side and he will roll to his back, and big news he is babbling, cooing and he actually has a great voice we never really heard before it but its starting to get pretty loud. He really showed us today when we put him in the tub he was squealing and babbling, smiling up a storm. We had our first speech evaluation at the university and she was really impressed, he wasn't doing much babbling but she sang to him, made noises then all of a sudden he just started right up babbling right back then she was going to hold him and it really I am not even joking it sounded like mama (to us it was more a whining ma ma) I told her of course I thought I have heard it a couple times but I just really want to hear it so maybe I was just making myself hear what sounds like mama, but then my family has said something but still I couldn't believe it but when we were both sitting there it really sounded like it, it was great!!! She wants us to get another ABR test before getting hearing aides because theres a small chance he doesn't need them (praise GOD)!!!!! He is just taking off like no other his muscles are still tight and he really has a hard time getting something in his mouth but thats what we're working on and since I have the greatest team working with him nothing can stop him! He is on a muscle relaxer and since we put him on that he is just so much happier! The PM&R (physical medicine and rehabilitation)doctor said why he was crying day and night and not sleeping was the fact that his muscles were tight everywhere from neck to legs the analogy she gave us was it would be like us getting a stiff neck but we would have the tightness from head to toe, everytime he would go to sleep his muscles would relax but then he would move and the tightness would flare up making him wake up and just cry because of the pain! She thinks why it just happened in July, august was he had a growth spurt and his bones grew but his muscles didn't and thats why all the stiffness and pain, I still believe some of his regression is because of vaccines but thats a whole other post to be written!I am just happy he is doing better and advancing.

We seen the eye doctor and his farsightedness has improved so still no need for glasses, but if he does end up needing them its not from being a preemie its cause of me, I wear contacts and have had glasses since I was about 5yrs old! He said babies should have farsightedness over nearsightedness it was just his farsightedness was very high but its good to hear its improved. All the doctors we see just love how he uses both eyes equally and tracks everything he is a very curious boy!

We had a chromosome test and a metabolic test done to see if the feeding and milestone regression was due to something genetically and both came back normal! Like I said I still believe it was vaccinations and yesterday was his one year well baby and we requested not to get his vaccines we still want to think about it! I will write more on the basis of why I think he regressed but until then...

Well every test can be done, everyone can guess but there is only one person who knows the capabilities Jonathan holds and what his future will bring, I just praise God everyday I wake up and see a happy baby boy! I believe Jonathan is and will continue to just be a testimony of our great and heavenly father!!

2 comments:

The Buckley Family said...

I am so happy to hear that things are going better, especially the weight gaining and the sleeping - you all needed that! So if Jonathan liked the pudding, the next thing to try that our kids love and is similar texture is unsweetened applesauce.

Shirley said on Friday that you and I have got to meet up, that she's so glad we connected on-line and can be there for each other. : )

The Buckley Family said...

Oh, and I forgot to tell you but we had that striped outfit for Johnathan too (our's was preemie) and we LOVED it - so cute!! : )