Wednesday, July 1, 2009

Chart Maker

Short of the fact that Robbie is still wheezing, it was really a good day in his world.

He slept well all night without having to be woken for a breathing treatment. (The doc said I only have to wake him for a treatment if he's wheezing in his sleep.)

Then this afternoon we had his 12 month check up. (Yes, at 13 months. We're a month behind on everything because we delayed his first shots until he was 4 pounds.)

Dr. P had nothing but positive things to say.

He weighed in at 16lb 4.5oz. Measured at 24 3/4 inches long. I didn't get his head measurement but I could probably figure it out BECAUSE IT WAS ON THE GROWTH CHART. For the first time in his life, he's on a regular (not adjusted!) growth chart. His giant noggin is in the 10th percentile.

We're still working on weight & length, but his weight made a huge leap upward. Right now he's projected to catch up on weight around 15 months old. Length isn't even remotely close, but she said it's always the last to catch up and she really isn't worried about it. If he's not caught up by age 3, we have other things we can work on it with.

She asked about all the fun things he's doing and decided that his development is somewhere between adjusted and actual age. She wrote down 8-10 months (he's 10 months adjusted.) but that's allowing for the things we know he's behind in (mainly gross motor stuff. Since he's just now sitting very comfortably unassisted, that'd be around 8 months, for example.)

Overall, he's doing very well.

Then we got to the illness stuff. He was wheezing in the office, though he'd cough and clear himself occasionally. If I could teach him to cough on command, he'd be golden. She stopped his oral steroids and started inhaled ones. (That's a step down treatment. Progress.) She checked his ears and said the infection seems to be cleared up, but he still has fluid, so we'll watch them.

We also talked about the winter. She really wants to get him approved for Synagis shots this year as well. Synagis is an injectable that helps fight RSV. RSV is the most common cause of lung infection in children. For most people, it's not much more than a common cold, but in someone in a weakened state, it can be very serious.
Synagis isn't a vaccine, but if a child is exposed to RSV, the Synagis helps it from becoming so severe.

The trouble is that Synagis is EXTREMELY expensive. (Let me say that again- EXTREMELY expensive. We're talking more than a thousand dollars per month, and he gets it for at least 5, sometimes 6 months.)

He was easily approved last year because of his gestation age and weight at birth. This year, things will be harder.

The good part about him being sick right now is that it might make getting approved a little easier. She added that if he gets sick a 2nd time, it will probably guarantee it. That also lead her to tell me that I shouldn't try to avoid him getting sick again because it would help our cause.

That doesn't mean we'll be letting strangers cough on him, simply that if he does get sick again, it has a silver lining.I will resist my urge to put him back in a bubble after this is over.

Her main concern is that if he got THIS sick from a less severe virus, if he got RSV, he'd be in real trouble. So she wrote for him to be submitted for Synagis approval. Cross your fingers!

He couldn't get his vaccinations today because of the illness and because he's been on oral steroids. Both things mess with his immune system and she doesn't want to tax him any more than he already is. The plan is to keep up the current regimen of meds until he stops wheezing, then he'll get the inhaled steroid for another week past that. At that time, he'll get his last vaccination and she'll double check his ears & lungs to make sure he's in the clear.

She guesses another week of Albuterol then the week of Pulmicort for two weeks more of breathing treatments.

On that front, things have improved. Robbie has finally accepted the treatments as part of life. He still flinches every time you turn the machine on (it's very loud, even wrapped in a towel) but as long as you give him a minute or two to acclimate to the noise before going at him with the mask, he does just fine.

Tonight he even decided he wanted his paci while getting a treatment. He found himself very frustrated trying to get it in his mouth with a mask on so I helped him out. Of course, then he got frustrated again trying to figure out how to get his hands to the paci to hold it in, but he managed. My boy, the multitasker.
So all in all, it was a good day. It felt SO good to see him on a growth chart. Just another step towards normalcy. We'll take it!