Tuesday, March 31, 2009

These are from princess' ballet recital last week, not as good as last year, but she still had a good time.

monkey's appointment with the new doctor went ok. I'm not thrilled with her but I've realized I Wont get a good doctor. She agreed that there is something going on and like his previous peditrician she too believes that he has cerebal palsy. The only thing is that a neurologist has to determine that and NO ONE can get him in until October!?! He will not even be able to have an EEG to rule out seizures until then! This is crazy, but I've realized all my fighting and whining is doing no good. He is a very active young boy, and I'll take each symtom that comes, if it gets worse then we will go from there. I've lived with the purple lips, rashes, fevers, and aspiration for 19 months whats another 7? I've just got to watch my eating with all of this, I have gained about 15 lbs. At first it was a little hear and there, now I'm up to 15! So maybe I'll take up running?hmmm.

Monday, March 23, 2009

Ok I need help....

monkey has had many problems since birth. Most of you are already aware of this. However, I am so un-lucky when it comes to finding a GOOD pediatrician! I find great OB-GYN doctors but horrible pediatricians. Please pray this changes today because after calling around for two hours this morning, and being told "Honey your son has too many problems for this doctor to handle, how about trying this doctor." I was at the end of my rope and had one more doctor left on my list of gazillion to call. This doctor is willing to take him, all symptoms in tow. And she got him in this afternoon at 3:00! I'm so nervous yet ready for SOMEONE to give me some answers. So the reason for this post number one is prayer, please pray that this doctor will have the wisdom to look at all the symptoms together and find out what's wrong. Also that she will point us in the right direction. Second is because I want to know if anyone out there knows what might be wrong with my baby. I am going to post some of his history here and please pass this blog along to whoever you might know that could be of help. I want some answers!

  • I delivered monkey at 35 weeks gestation. He was actually the size of a 32 week baby because he did not grow after 32 weeks. We don't know why he stopped, we just know he did. We were aware of this pre-delivery. weight:4lbs 13oz. 17 3/4 inches.

  • He immediately had breathing problems and was not allowed to be in the room with me for about two days. They never had to do anything for the breathing problems just monitor him. He then wouldn't eat much, and was not keep up his body temperature and had to do that before coming home three days after birth.

  • He always sounded "nasal-y" while taking a bottle. This was immediately after birth. He always sounded like his nose was clogged.

  • He ate very fast and often choked on the formula.

  • At age two months we noticed that he had what appeared to be seizures. He would roll his eyes back in his head, his eye lids would shake, and one arm or leg would also shake.

  • At age five months he got the flu, which is when all of his sicknesses began. He then got pneumonia (6-10times), bronchitis(3 times), RSV, the croup and many upper respiratory(maybe 4-6) infections.

  • He has only had ONE clear chest x-ray in 18 months, all the rest have shown infiltration.

  • He did not hold his own bottle till age 14 months.

  • He did not walk without support until age 18 months.

  • He had a swallow study done in October of 2008 which confirmed that he aspirates or penetrates every liquid that he swallows. He began oral and motor therapy at that time.

  • He began physical and occupational therapy at about 14 months for the upper weakness.

  • He gets very winded with activities.

  • His lips turn purple-blue several times a day, nothing else is purple-blue, just the lips

  • He breaks out in a weird rash (not eczema) 6-10 times a month.

  • He has frequent high fevers that range between 101-104 (this happens 1-2 a month)

  • At birth he was at the 3% for weight, then 1mth-3%, 6 mth-26%, 9mth-34%, 1 year-23%, 18 mths-8% (that's a big drop from 23% to 8%)

  • Had one day where he smelled bad....not body odor bad, it was a weird foul odor that came. He had just been bathed the night before, no diarrhea or throw up and the smell just disappeared a few hours later.


These are the tests they have run, and the problems we KNOW he doesn't have:

  1. EEG as an infant-normal

  2. Chest x-rays- only 1 was normal

  3. blood work -mostly normal

  4. urine sample- normal

  5. EKG-normal

  6. Echo cardiogram-normal

  7. PH probe(acid reflux test)- normal

  8. EGD (biopsy of esophagus, stomach, small intestine)-normal

  9. Sweat test for cystic fibrosis-inaccurate, no answer

  10. MRI-normal

So does anyone have a clue what could be going on?

I know the symptoms are crazy and all over the place, but that's what is confusing to us also. Thanks in advance to anyone that can help.