Tuesday, December 9, 2008
Jonathan is doing very well! He just got weighed today and he is 14lbs 7 ozs that was music to my ears:) I think this time he really is teething he is drooling, crabby and not wanting to eat much. His hands are in his mouth a lot more, he is making great progress in therapy, I love our therapist Allison she is really caring and she just lent us a chair called called tumble forms its great its foam and we put Jonathan in it we can position it so it lays back and he has to do very little with his muscles or we can bring it up more and he has to really work on his neck muscles! I would say two months ago Jonathan couldn't hold his head up but now that he is putting on the weight and sleeping he holds it up for awhile he even will play with his toys. He is really getting the hang of putting his toys to his mouth and hands into his mouth, he still exercises extensor tone which makes it difficult for him to control his arms and hands but with therapy he has really come along! We had a difficult morning with p.t because Jonathan was really stiff even after his medication and it was affecting his right arm which is very unusual it usually his left, however he is now looking to the left all the time where he was looking to the right.? We don't know what to think it really seems like he is doing this mentally because its when he is having a tantrum or he is not getting his way he will stiffen which ever muscle we're trying to work on and if we give in he is fine(sometimes)! Its very confusing to us and therapists. If he had head control he would be crawling we put him on his belly and he gets his own legs by himself under him and moves across the carpet with his head dragging its not very far he goes because he doesn't get that he has to bring his arms back up but once he gets that head up I bet he starts crawling real soon! His head is growing again which is a relief it is now 43 1/2 cm and we think he is about 28 inches.
Jonathan is going to Cincinnati feeding clinic on Feb. 3rd. This is probably the hardest thing ever to deal with a child that won't eat! Its very strange that he used to eat about 20 ozs from bottle and eat 4ozs baby food and now its almost all by ng tube he doesn't even want to suck on the bottle, its completely frustrating I tried baby food and he took a couple bites, he doesn't want his cereal anymore however we went to Mcdonalds and he sucked all the potato and grease off 3 french fries so he has the suck down he just doesn't want baby food or milk, he has gotten so clever as to when he sees the tube we feed him in he cries, turns blue but you know he is hungry because he eats ever 2 hours he just doesn't like milk, is there flavoring I could add? is he old enough for pedisure they make flavors? He did eat about an ounces of gerber blueberries and pear dessert today and he seemed o.k with that. I believe its a behavioral thing because he sucks just not on the bottle and he eats (not enough) foods he likes o.k so only fries he can't live on that or can he? I did find a hopefully wonderful thing called benecalorie its only available online its made by nestle nutrition, it main purpose is to add calories to food to people having a hard time gaining weight and not eating enough to gain the weight. I was reading an email from an Australian woman who used it for her preemie 28 weeker and she gave it to him at his two night feeds because she didn't want him to feel full during the day and not eat by mouth, it worked! She claimed it was tasteless and it had no volume so it wasn't was hard on his belly, and she could mix it with everything and the consistency was no change to the food or formula. So its pricey but it will be so worth it it comes in 1.5oz cups and it boosts 330 calories thats 7 calories per cc!!!!! It also packs in protein. We will start slow but hopefully this will work!
Christmas is just around the corner I still have no ideas on what to get my hubby, I don't talk about him much but he is wonderful, he works hard so I can stay home with Jonathan and we live in a beautiful home in a great subdivision, I have the greatest parents around they have helped me so much my dad wad letting me get sleep when Jonathan was having a real hard time with his pain, I love my husband and my parents so much, i have no idea what i would have done without them!
Thursday, December 4, 2008
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!!