Thursday, March 26, 2009

Knock Knock

I'm knocking on wood.

I think Noah's nose may have ceased leaking for the first time in almost 3 months.

He had been sick for so long I was starting to worry. Being immune suppressed and having a donor heart can make for a less than stellar combination when mixed with nasty viruses and bacteria.

The diarreah? Still visiting. It doesn't ever go away. It just gets a bit better. This kid has had 3 non-liquid poops in his entire life. I went back to soy milk after 2 bottles and his foam poop cleared right up. I think it's the extra fat in the dairy that he can't tolerate.

He is making great progress on his speach too. He isn't saying more words really but you can see his desire to communicate and he tries. He surprises me each day with how much he really understands.

Today I tried to lay him down for a nap without giving him a bottle first (he gets several bottles of soy and carnations each day to make up for the food he won't eat). He adores his bottles and this made for one very upset and tired little man. He instantly started crying and saying Ba. I told him I would go get him one and he immediately stopped crying (for being able to instantly turn it off he sure sounds like it's a real cry). When I came back I asked what he had done with his binky and he point to the small space between his crib and the wall. I can't reach back there and I was frustrated. "Noah, why did you throw it back there?", I said. He looked at me, shrugged, and grunted something that really sounded like "I don't know." I chuckled. I couldn't help myself. When I picked him up to sit in the chair for his bottle, he raised both arms above his head excitedly said "Ya!".  I tell you, he surprises me more everyday.

When he woke up from his nap, Lilly was in the bath tub. Some how I had the misguided idea that he could see water and not insist on getting in it.  He immediately proceeded to try and take his clothes off while saying baa (for bath) over and over. When I wasn't quick enough for him, he let me know it.

He is doing ordinary toddler things and yet they are so extrodinary in every way. I can't help but see everything he does as a miracle. I'm sure he doesn't mind when he gets away with being a stinker.

Thursday, March 12, 2009

Sick and Sick of Winter

Noah has been sick since January. He just can't seem to shake it. It flares up, gets a bit better, then flares up again. We finally did one round of antibiotics last month and it helped enough to turn his snot from green to clear again but his poor nose is like a broken faucet. It runs and runs and runs.

What's weird, is that it seems to get worse after his synagis shots each month. This past week he got his shot on Monday. Tuesday morning he was sicker. By Wednesday morning, he was having such a hard time breathing that I hooked him up to his nebulizer and the pulse ox. His Oxygen saturation was about 89 and that's with very fast labored breathing. So I called the pediatricians office. Dr. Samson-Fang wasn't available but the nurse, Diane, said it was best to come in. So up to the hospital we went. Since we did the breathing treatment before we went, by the time we got there he was back up to 95. We saw a Doctor we have never seen before but she said he didn't sound like he had pnemonia and his ears were clean. So she sent us home.

It seemed like a wasted trip because he still sounds so awful when he struggles to breath that I have a hard time believing he doesn't at least have bronchitis. But, I also have a hard time trusting just any Doctor when they aren't familiar with Noah's status as a medical enigma.

Either way, we are doing his breathing treatments several times a day to help him breath. I also had to put him back on the oral Gentamyacin IV since his super stinky diarreah came back too.

Even though this has been a rough winter full of hard to kick germies, we really are very lucky and blessed. The germies we've had have been manageable from home. Our sweet Heart Cousin Beckham has been in and out of the hospital with low platelet counts. It's so bad, that he is now back in the hospital indefinately until they can get it back to a normal level. It's just too dangerous for him to be away from the hospital since he bleeds so easily and it doesn't want to clot. The poor little guy is covered in bruises. It breaks my heart!! Please keep him and his family in your thoughts and prayers.

Tuesday, March 3, 2009

A New Word

Noah finally said (with some prompting). . . Ma!

It sounded like musical gold. He has only said it twice since then and both times with prompting but that's fine with me. He has to start somewhere.

Tomorrow I am taking him up to Primary Children's Hospital to meet with an Orthopedic Specialist to see about his leg turning out. His appointment is at 8am. They called and asked me to be there 15 minutes early. They claim for paperwork but I know better. The clinics don't even open till 8am. They just don't want me to be late. I don't blame them though. A 30 minute drive that early in the morning... if it wasn't for my insomnia and waking up super early lately I might actually be worried.

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