We went to a clinic visit today with the sleep pulmonologist to discuss Buggy's latest tests. He showed us the CT of her chest and the absolute lack of huge permanent disease. There is some scarring, but no "syndrome". He also listened to her and said that she is clearer than has has ever heard.
We finally got her "jiggly vest" which is a "high frequency compression" vest that they get for kids with cystic fibrosis to help clear their airways. She tolerates it sooo much better than CPT (pounding on her chest and postural drainage) and I feel like it is more effective. I was really afraid of the insurance approving it as it is so expensive (think new car expensive) but I was reminded by another mother whose child has this apparatus, if it keeps her out of the hospital just once, then it has just about paid for itself.
We have also been giving the prevacid and I hope that is helping as well. We won't be able to see any GI dr until July , but we might be able to strongarm them if we go back to our general surgeon and have some more tests done to solidify the reflux/aspiration dx. He will probably agree when he finds out about the swollen larynx and surrounding tissues.
Hopefully, the chiro will have addressed the hernia and it won't need to be repaired, but even if it does, he can maybe keep it in place instead of having it slip out which happens to many kids with this kind of hernia.
J and I talked about how we hadn't really noticed it because it was gradual, but Buggy's breathing is much more quiet than it used to be. Something I've noticed recently is that living with a child that has multiple disabilities sometimes blinds you to those disabilities. I know she has them, I just forget because she is who she is, and it takes an outside source to remind me that her way of swallowing or the way she forms words is not "typical" because it's how *she* does it.
On the baby front, I think I may be finally eradicating my infection. My midwife thought it was already in my kidneys before we caught it, but I can't tell, my pregnant UTI's tend to be asymptomatic. (If you're going to have a UTI, wouldn't you rather it be that way? :-) ) I'm leaving for Colorado on Sunday and just hoping that the contractions are well-enough under control that the pressure changes of flying won't send me into labor. As long as she waits until I'm home, then we're fine...a little early, but fine.
I brought out the baby diapers and all of us are so excited to have someone that is small enough to fit into these tiny little confections. I love cute newborn diapers. It almost makes me sad that we want to try EC, but I'm sure there will still be plenty of opportunity for diaper wearing.
Anyway, if you're still with me (sorry this was so long), I'm glad you liked my tag. This week is shaping up to be pretty good. I loved Conference. I'm glad that I live in a place where I have access to all five sessions live. Listening on the radio is not easy with little ones, but it's still doable, and we borrowed omi and opi's TV so that we could watch some of it...who knew the Valley Channel would have some, but not all of the sessions? It was fuzzy, but watchable. :-)
Have a wonderful week!
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4 comments:
Glad to here Buggy is making progress.
I'm dense: what is EC?
I'm doing a combo of cloth and disposable right now. I'm finding it hard to keep up with my laundry.
:-) I knew someone would ask that. I should have just explained...If you think I'm crazy for doing cloth, here's an even worse one: no diapers. It's called elimination communication and many of those babies are completlely out of diapers before the first year is over. It's an extension of just reading their cues and learning what cues they give before they go to the bathroom and then helping them learn to go on cue. We had strted it with Buggy just barely when she ended up in the hospital and that was over, but I want to try it with this baby.
What kind of a diaper pail do you use? I use a dry one and don't do more than one extra diaper load per week unless I've got two in diapers. I also have bunches of diapers. :-) I also can't do laundry all on one day anymore, it's too much and too hard. I have to do a load every day. When I do that, it gets much more bearable. I'm beginning to wonder when is the right time to teach Frodo to do his own laundry... :-)
I am glad to hear Buggy is breathing well. I can see what you mean about not seeing other problems your child might have. Although our situations are different they are similar in that respect. Our pediatrician pointed out that Della is 15 months and is still on an almost all liquid diet and that she spits up a lot. It was a bit of a wake up call for me. I guess it was on the back burner for so long as we just tried to get her well and figure out what is going on. So we have a endoscopy tomorrow which I am not very excited for. But at least we will be able to move forward and start with an OT who will help us get Della eating solids. We also started on Zantac and I have to say I haven't seen a hug improvement.
Good luck with the EC. I admire the fact that you are going for it with all that you have on your plate. I hope you have fun in Colorado, a change of scenery can be so refreshing.
Karin, I thought you might be interested in this:
I have a friend that is a photographer. She is giving away free newborn (5-6 days old) photo sessions during the months of April and May. If you are interested or know anybody that might be interested, you can refer them to her blog which is www.melhowlett.blogspot.com If you scroll down to the middle of the page, she has a post titled "Giveaway". Just leave a comment and she will get back to you. She does a really good job! Check out her blog!
I found this on one of my friends sites. I think she's in Weber County.
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