Monday, October 27, 2008
Tuesday, October 21, 2008
I wish I hadn't. :(
Two years ago, on her third birthday, my Peanut tested severely developmentally delayed and was finally labeled with the horrid "Mental Retardation". She was tested in every field and area, and overall her developmental age was 6-9 months.
Two years later, on her fifth birthday, she averages 8-12 months. In my mind, she is doing SO amazing right now! She is more active, aware, alert, and mobile than ever. I guess though that what seems like huuuuuuge steps to me and our family and everyone who knows her ... really are not that big of a deal.
I know that in the scheme of things it's what WE see that matters. It's how happy and functional she is, not how she scores on paper. It's sad that the school sees her as so low, when in my eyes she is as high as the heavens.
I don't know if I'm even making sense in this post. I hate evaluations.
Thursday, October 16, 2008
Tuesday, October 14, 2008
She *CAN* eat by mouth. She can open her lips, she can chew, and she swallows normally. But she will not do it. She is so orally aversive that we are considered feeding therapy drop-outs. She simply can not be fed by mouth. Reflux is a HORRID thing!
Due to her metabolic disorder, she cannot go more than 3-4 hours without fluids. During the morning and day time she gets Pedialyte every 3 hours. Then she is hooked up to her feeding pump (Zevex Infinity for those in the know) from 3:30pm-7:00am. It is such an inconvenience. The reason she is hooked up for SO long is that she has never tolerated more than 50 cc's an hour. That is sloooooow for pump feeding. To give you an idea of how much it is, 60 cc's is 2 ounces. She tolerates less than 2 ounces an hour, by a slow drip. When she wakes up in the morning, she always chokes and gags and retches until she throws up. Then she always throws up her morning Pedialyte.
The GI had this thought that perhaps it was the Beneprotein that was making her throw up. He said that many patients don't tolerate it. My Peanut has always been a retchy girl, but this is worse than ever before. Her formula is a mixture of Neocate Infant, Beneprotein, and Polycose. So we are doing a trial right now. We are ONLY giving her Neocate Infant. She stopped throwing up! We tried it for 5 days, with NO throwing up. She still retches and gags, but no actual vomit. So I added back in the Beneprotein to see what would happen .. and the next morning, she threw up. I took it back out, no more vomit.
AH HA! An answer perhaps! Even better, is that on just Neocate Infant I have been able to get her feedings up to 65 cc's an hour so far. For every cc that I can increase her, it lowers the time she has to be hooked up. It is much easier in the afternoon when she's awake to NOT have her connected.
So that's where we are. I don't think she can stay on just Neocate Infant forever, because we have to lower the volume of formula per water due to her metabolic disorder. She is not getting the full fat of the formula, so we need to add in supplements. I am waiting to hear from the metabolic dietician to see what to do next. In the meantime, we haven't had puke in almost two weeks!!
Monday, October 13, 2008
We need to get her a new bed. This one - http://www.efurnitureshowroom.com/emily-trundle-day-bed/prod_2998.html?gdftrk=gdfV2405_a_7c480_a_7c1516_a_7c2998 - is PERFECT! I found a cheaper one near us, but the arms of the bed slope downwards and she could climb over them when she's on her knees. This one linked above, THANK YOU TAMARA, would be I*D*E*A*L for my Peanut. (For those of you that really KNOW me and my Peanut, you know why this bed is even MORE perfect! Please don't comment with personal information however)
So now what? What good does that do me? I have a mattress already. I have room in her bedroom. But I don't have that kind of money.
What I do have is an eBay store, that is trying to stay afloat. What I need is a miracle.
It is sad to me that as parents we are not only dealing with the physical and mental and emotional side of dealing with a gorgeous but disabled child, but also drowning financially. :(
Wednesday, October 8, 2008
She can't go in a normal bed, she has no safety reflexes. She'd fall right out. And the bed rails that they make for kids aren't big enough. She would roll the the end of them and fall out. She likes to get up on her knees and kneel (tall kneel, for those who know LOL). She would topple right over the bed rail.
So I thought about my blog-friend Tamara, and her daughter Abby. She is in a gorgeous daybed that is turned around to face the wall, in a sense making a giant crib. But how do you change diapers? I assume I would then need a changing table in the room, but Peanut is too long for those. Her room is fairly small also. And as I priced day beds that would work (meaning, solid wood backs and not slats or bars) .. they are expensive.
So I am looking at SleepSafe Beds. I want a Sleep Safe HiLo for Peanut. Has ANYONE ever gotten one of these approved by their insurance? They offer letters on their website for you to modify to your child, to help get it approved. These beds are AWESOME, and would be perfect!! I am going to start working on it now, but I was looking for some encouragement from anyone that has actually gotten one before.
So let's hear it. How does your special needs child sleep? Is it working for you??