Thursday, February 26, 2009

Hearing aids

Jonathan has recieved his new hearing aids! It took a little bit to convince him to keep them in but is getting better about it everyday, he likes to laugh when I put them in.
He seems to really concentrate when their in but he doesn't babble as soon as we take them out he just babbles up a storm so I think he needs to get used to them.

Jonathan loves his swing however is getting way to big for it his legs hang out but he loves to take his nap in it.
He has also showed interest in wanting his favorite monkey to share his little space next to him. I put it next to him and he just smiles and then leans his little head on him an ends up falling asleep. He's cute what can I say!

Monday, February 23, 2009

The Hits Keep Coming!

The last week was hectic.
We went to Jonathans PM&R doctor who confirmed his diagnosis of cerebral palsy she actual labeled it as a spastic quadriplegic. Meaning he is going to have a hard time with all developmental milestones. I always knew he had some form of cp but I guess when the doctor told me it really hit me hard, Justin and I were a complete mess! Who wants to hear that their child is going to have a hard time sitting, standing or walking things most parents don't even worry about. Don't get me wrong I love my little man with all my heart and am very happy to be his mommy. What scares me is the future, when he goes to school and he sees other children doing things he can't and wondering why! Sometimes I just sit and pray and ask why, why couldn't the boys just stay in a little longer, why does Jonathan have to go through this too then what keeps popping up when I am done is this.. why am I so worried am I not supposed to put all my trust and faith in him! Is GOD not the one that brought Jonathan from being profoundly deaf to slight/moderate hearing loss! Is he not the one that gave Jonathan life when on the second day of life the doctors came to my room and told me Jonathans is very sick and probably won't make it either!
So I come to this Jonathan is who he is GOD gave me him for a reason, he has a plan for him and I will love my baby the very best I can!

Now on to some other stuff!

Trying to get used to a feeding tube is not easy, Jonathan likes to grab it and pull not a very good thing so I had to come up with an idea. I put a small washcloth over it and ace bandaged it around his whole body its very interesting but it works he doesn't scream every time he hits it. The feeds were not going good but I think there getting better, we have him off all formula and he is on a blenderized diet. This consists of organic everything, coconut milk, rice milk, a fruit, a little oatmeal, some flax seed oil, probiotics, pear juice and yogurt he is tolerating it well. He has very little reflux now and he started gaining again. My mom got him to eat about an ounce from the spoon, I was ecstatic and he seemed to enjoy it too, however just as he was about to take another bite he threw it all up. We thought it was just a fluke but the next day he eagerly ate another ounce for me but then threw up so he wants to eat but for some reason he can't keep it down. So we are going to see a GI doctor just to rule anything that could be bothering him, oh ya he LOVES coke we give him maybe a straw full once in awhile(thanks Grandpa V)and he just smacks those lips for more, hes a goof but I love him!!!

Wednesday, February 18, 2009

Wordless Wednesday

Jonathan has now learned the boo boo face, everytime we put him down this is usually what we see! If you look closely he even has a little tear in his right eye.

Sunday, February 15, 2009

Jonathan is home!

This is a picture right after surgery, notice how red and swollen his face is!

Well its done Jonathan had his g tube surgery and we are at home, but
we had a terrible exsperience. First the doctor again tried to
convince my husband and I to get the fundo and of course I said no. A
friend of mine whos son was also born at the same hospital said this
doctor did her sons hernia surgery and wanted to do a fundo on him
because of his every so slight reflux!
This is the tube that will be replaced in 6 to 8 weeks

Jonathan went back to surgery and it was quick, he had an allergic
reaction to the anastesia(sp?) his face was swollen and very red. He
did very good we got him to his room then he started with some apnic
episodes, scared the death out of the docs, nurses and the nurse
manager we tried to explain this is jonathan and when he is hurting
he does some breath holding but always comes back. Well long story
short we ended up in the NI with one of his old nurses during the
night and one durning the day, before we left peds they had him on 1
liter o2 and when we got to the ICU they pulled of his o2 and he did
fine ( it really helps when the nurses know how your kid is)satted 97
to 100 unless he fussed which was a lot he would drop to low 80s but
bring it right back up. Well his breathing episodes we think were his
reaction to morpine, I am allergic to morphine so we think maybe he
might be because he did a couple episodes but nothing like earlier in
the day. So since they didnt want to give him morphine they made him
suffer through his pain with just plain old tylenol(every 6 hours
errrr) but his nurses were excellent and it was like a family reunion during the night his old nurses just held his little hand and massaged him, (thank you NI nurses my son still loves being massaged, head, feet, hands anywhere because of
his 21 week stay and your loving care!!)
This is what I dealt with all night, my poor little man!

I had it 5am I knew Jonathan needed something else and the poor kid needed to eat he was clearly starving! So at 5 am his nurse paged the resident that finally gave in to giving Jonathan tylenol with codine and he was so mellow after that and we tried out the g tube putting only 40ccs in and he took it like a champ he fell asleep andslept for a good hour!

This is when we told Jonathan he can eat :)

We have been feeding just about 2 ounces every
2 hours and he is handling o.k he is very tired and just wants to be
held and rocked which is fine with me! Yesterday we weaned Jonathan off his medication and he has been his happy self he slept good last night and this morning was wanting more to drink (via g tube) so he is almost back to his full feeds, probably tomorrow. The G tube is a little scary you can see the stitiches which will be removed this coming friday and in 6 weeks from then he will get a button which is almost flush to the skin where this tube is about 4 inches long and very irrating he will be wearing p.js for awhile. I was hopeing to get rid of the long tube and have the button placed before our vaction but it doesn't look like it will happen, oh well. We can't wait till we can put real food into his belly, we are going to wait till he is 1 year old corrected so around mid March or we might wait till after vacation it will be nice not having him strictly on formula!
Thank you everyone that kept us in your prayers, we love you all!

Wednesday, February 11, 2009

G tube surgery and HEARING!!

Jonathan will be getting surgery tomorrow, this surgery will help him gain the weight he needs to develop. A g tube is placed directly in his belly and then he can eat by mouth (without the current tube thats down his nose and into his belly) and not have any irrating tube in his throat. At night we can pump his needed calories he didn't get throught the day into his tube, or as we will refer to it tubie tube! I am very worried about this surgery eventhough its only a 20 minute procedure and the surgeon that did a phenominal job on his PDA when he was an ity bity 2lbs is going to do this surgery. We will be in the hospital for 2 to 3 days depending on how Jonathan feels, I hate seeing him in pain! We know he is going to do fine, GOD has shown us so many examples of his faithfulness and love, Jonathan is just a miracle and we love him so much!

Well Jonathans hearing... When we came home from beaumont hospital it was said to us that Jonathan was profoundly deaf and we have noticed his hearing just getting better, so at the University of Michigan they took another hearing test a couple days ago and listen very carefully Jonathan has mild to moderate hearing loss did you hear that o.k if you didn't Jonathan has MILD to moderate hearing loss PRAISE GOD, is he not worthy of praise, right here this very blog you are reading is the works of the LORD happening I just want to shout to the world that GOD deserves all the praise!! Get this it gets better, the audiologist that did the test also fit him for hearing aides and said its possible he outgrows these and doesn't need them, that it seems his hearing is getting better as he grows!! GOD is good!!

Well tomorrow is the big day and please keep us in your prayers!

Love you all!!

Sunday, February 8, 2009

The feeding clinic

Well the feeding clinic was not exactly what I thought but it was informative. Jonathan loves food in his mouth anything actually he has no sensory issues so that is great however he does not eat enough to gain the weight even if we add a half stick of butter he still would gain no weight and I am not going to give my son butter to live on cause it can't be healthy! So the clinicians advised us to try a feeding pump at night to get most of his calories in then during the day we don't have to push so much. We have tried the feeding pump the last three nights and it works to some degree, I get to go to bed at 9pm and not worry about getting a feeding in him however jonathan is waking up at 330am or 4am (not cool) in a very good mood but I really don't like getting up when its dark. Plus he is not handling the amount of 70ccs an hour he is only wanting about 55ccs an hour so we may have to get something done to check his stomach size according to the clinic because he should be able to tolerate more than that! They think its possible he has a very small stomach and its just not stretching, he also had a swallow study to make sure he is not aspirating and he did great he drank his bottle and ate some applesause and did not aspirate. They were very impressed that he still loves things in his mouth after having an ng for as long as he has. So all that said we are going ot go ahead and scheduale a g tube. This will help him get the calories he needs and he will be able to eat his limited intake without a tube stuck in his throat. We are sad it has to be this way but also know it will help him, he is really sick of the tube. So we will set up the date this monday with his surgeon and go from there.

I will update more when I get time and post some cute pictures of the little man!!