Thursday, February 28, 2008
Shouldn't be much longer
For those of you who are wondering when we will get the results back from the muscle biopsy (and this includes me!), it's been 7 weeks since the operation. We were given an 8-12 week window for results. So, I expect to hear by the first week of April.
Saturday, February 23, 2008
Potty Pooper
Well, Eve pooped on the potty. We know she's not anywhere near being potty trained (nor is it really appropriate) because she can't get herself to a potty or pull down her pants. But we've begun talking about the potty around her. She's even sat on the toilet a few times for fun. We asked her if she wanted her own potty and she said yes. So we bought one at Target this morning. After lunch, we put it in front of the TV (per the pediatrician's recommendation so she can relax) and had her sit on it. She sat there happily and after 5 minutes she took a poop in it! Of course we went nutso praising her for it and let her flush it down the toilet. Now, I think it was all a matter of timing. I knew she was brewing a poo because she had her poopy face on at target (unsuccessfully, though). But, no matter - because her first potty experience was a positive successful one. It might make it easier for her to connect what it is to be used for. Also, if we can teach her the sign for potty, she might be able to tell us when she needs to go and it just might work.
Sunday, February 17, 2008
Saturday, February 16, 2008
right hand and allergies
I just wanted to post a couple of things, more for my own record keeping (it's not major breaking news or anything). The past 2 weeks I have noticed Eve using her right hand much more and without prompting. A few days ago, she even reached for a spoon and wanted to feed herself with her right hand. Of course, her accuracy and dexterity wasn't great, but I helped her hand over hand. Today, I made egg salad sandwhiches for lunch and she did something I've never seen her do. She grabbed the sandwhich with both hands and ate it that way. She ended up bringing her mouth to the sandwhich rather than the other way around, but it was still great to see.
That's a temp tattoo of a dog on her hand. If you click on the picture, it will enlarge and you should be able to see it.
Other things: She started taking Zantac this week for reflux. Eve has been having lots of wet burps and has been even spitting up a bit. It's only been a few days so we'll see how it goes. I also took Eve to an allergist recently. She had another breakout of hives at school, so I decided to have her looked at to see what she might be allergic to. They did a skin test for 20 different allergens (mostly food - egg whites, peanuts, almonds, shellfish, etc, but also dustmites) and only one came up positive - peanuts. So, no peanuts. Actually, he doesn't want her to have other nuts or potential allergens either, because if she had a reaction and her tongue was swelling, she wouldn't be able to tell us. I'm keeping my fingers crossed that she'll outgrow this one day years from now.
That's a temp tattoo of a dog on her hand. If you click on the picture, it will enlarge and you should be able to see it.
Other things: She started taking Zantac this week for reflux. Eve has been having lots of wet burps and has been even spitting up a bit. It's only been a few days so we'll see how it goes. I also took Eve to an allergist recently. She had another breakout of hives at school, so I decided to have her looked at to see what she might be allergic to. They did a skin test for 20 different allergens (mostly food - egg whites, peanuts, almonds, shellfish, etc, but also dustmites) and only one came up positive - peanuts. So, no peanuts. Actually, he doesn't want her to have other nuts or potential allergens either, because if she had a reaction and her tongue was swelling, she wouldn't be able to tell us. I'm keeping my fingers crossed that she'll outgrow this one day years from now.
Monday, February 4, 2008
pictures of equipment
Here is a link to a bath chair:
http://www.rifton.com/products/hygiene/bathchairs/index.html
And here is a link to a stander:
http://www.rifton.com/products/standing/pronestanders/index.html
I'm not including the gait trainer picture, because it doesn't show it with the accessories that Eve would need (hip positioner, arm braces, ankle straps, etc).
http://www.rifton.com/products/hygiene/bathchairs/index.html
And here is a link to a stander:
http://www.rifton.com/products/standing/pronestanders/index.html
I'm not including the gait trainer picture, because it doesn't show it with the accessories that Eve would need (hip positioner, arm braces, ankle straps, etc).
Sunday, February 3, 2008
ordering equipment
We had an interesting week. Eve and I both got pretty bad colds. Eve also got a very bad diaper rash due to the antibiotics she's on. Not a happy camper as you can see from this picture.
But, we are both doing much better. On Monday, we went to Atlanta to give those 3 tubes of blood to Dr. Shoffner's office and then we went to see the Neurologist, Dr. Krawiecki. Dr. K didn't have much to say (this appt was booked 6 months ago). He scheduled us for another appt at the end of April to go over the results of the biopsy (they should be in by then). I got the impression that he thinks nothing will come of it and that we will be left with "diagnosis unknown" and can basically assume we are dealing with CP. He really does think that because Eve has not regressed further (even though she has not really progressed either), the ground she lost was not a true regression - perhaps she got too heavy to continue crawling and balancing.
On Friday, the mobility specialist came over to measure Eve and talk about equipment. Thanks to the great work of the people at CHOP, he agreed with all of their recommendations. We are going to order a stander, a gait trainer, and a bath chair. They are all separate categories of equipment, so insurance should agree to pay for them. We will also need to order some sort of wheelchair for her as well for when she starts school in August. We can't expect the teacher to carry her around all day like we do. It should take about 3 months to get all the equipment in. It has to go through insurance, and get signed off by the doctor, etc. I'll ask Jim about the manufacturers - I bet there's a link I can post on here so you can see what pieces of equipment I am talking about. Hope you are having a good weekend - Eve is!
But, we are both doing much better. On Monday, we went to Atlanta to give those 3 tubes of blood to Dr. Shoffner's office and then we went to see the Neurologist, Dr. Krawiecki. Dr. K didn't have much to say (this appt was booked 6 months ago). He scheduled us for another appt at the end of April to go over the results of the biopsy (they should be in by then). I got the impression that he thinks nothing will come of it and that we will be left with "diagnosis unknown" and can basically assume we are dealing with CP. He really does think that because Eve has not regressed further (even though she has not really progressed either), the ground she lost was not a true regression - perhaps she got too heavy to continue crawling and balancing.
On Friday, the mobility specialist came over to measure Eve and talk about equipment. Thanks to the great work of the people at CHOP, he agreed with all of their recommendations. We are going to order a stander, a gait trainer, and a bath chair. They are all separate categories of equipment, so insurance should agree to pay for them. We will also need to order some sort of wheelchair for her as well for when she starts school in August. We can't expect the teacher to carry her around all day like we do. It should take about 3 months to get all the equipment in. It has to go through insurance, and get signed off by the doctor, etc. I'll ask Jim about the manufacturers - I bet there's a link I can post on here so you can see what pieces of equipment I am talking about. Hope you are having a good weekend - Eve is!
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