I always think of great topics to post here. Then I finally make myself sit here and write, and I can't think of any of them!
Well.. we can start with what's going on, maybe they will come to me.
Ana meet with her Rehabilitation doc last week. He says our treatment plan sounds great. And he threw out the idea of possibly doing Botox injections in Ana's neck to help relive the Torticollis. I'm still not on board 100%. I wasn't there, so I have to call and talk to him a little more.
We're still trying to get her Bronchoscope scheduled. They are running into issues because I want to add on getting a new Jtube while she's under. You would think that I asked them to move the Earth by the way the are acting. If they go about it the way they are thinking, then Anabelle will be put under, have the scope done on the fifth floor, be transferred while under to the first floor and have the tube switched. You might ask why, if it's such a hassle, am I wanting the tubes switched. Well. Because her tube cap broke, and this is very inconvenient. Also, because if she is under, we might as well do it. She's had this tube for about 5 months or so now, and they say this tube last about 6. So why put her out in a month again if we can just do it now? Oh, and now the Rehab doctor said if we want to do the Botox, he can combine this too. That will be fun to call and try to explain and coordinate.
Good GI news! I talked with the new dietitian and we are starting to increase Anabelle's hourly intake while decreasing her time on. For a long time Ana has been at 25 MLs for 18 hours, plus 4 hours of Pedialyte for more fluids. There are 30 MLs in an ounce, so she was getting 15 oz of formula a day (24 hr period), plus another 3.33 oz of Pedialyte just to keep her hydrated, but not pack on too many calories. So now, each week we are increasing her by 5 ML's. This week she is at 30 ML's an hour for 15 hours. Next week she'll be at 35 MLs for 13 hours, and so on and on. She'll still be getting 15 oz of formula, just not have to be hooked up to the pump all the time. Then when we get up to 50 MLs an hour for 9 hours, we're going to call her back or meet with her to discuss bolus feeds. Then we will start on a more strict blended foods diet. My hope is to get off formula all together and have her just eat whatever we do, just through her tube. That way, when she's ready to eat orally, it won't be a shock to her intestines.
We've also had two playdates with other AMC families. It was nice to finally meet some of the people who have been such huge helps to us since we first heard the word Arthrogryposis. And it was great to meet there wonderful kids and see how they figure stuff out on their own. It was a tad frustrating though. Amelia and Allison don't treat Anabelle any different then anyone else. However, when around kids their age with AMC, they acted as if they've never seen a brace in their life. I understand that they've never seen a kid their age with the same stuff as Ana, but I didn't expect them to be so shy about it. We deal with kids who stare at us daily. And I don't mind usually, but I never thought my kids would be those kids. I know eventually with time, and more time being inclusive, they will get it an not even think about it. I just it was just a shock to my system since they don't even see anything with their sister. But then again, it's their sister... But besides my kids shocking me, both meet ups were awesome!
My new goal is to post a new post weekly, every Sunday. I know I've said this before. If I haven't, I've at least thought of it. I need to keep my word on this so I can hopefully post about the things I think about during the day long enough to post them here. Or at least write them down! :)
Goal for next update: To update about AMC. I defiantly don't know everything about it, but many people outside the AMC world have asked lots of questions. So AMC, maybe combined with feeding tube/Gastroschisis information.
And please, if you have ANY questions about Miss Bear, feel free to ask. I look at is as spreading awareness, not offensive. You can do very little to offend me.
Until Sunday!
With love,
The Polks
No comments:
Post a Comment