moving along

I just called Dr. Shoffner's office to make sure all the paperwork was received. It has all been given to Dr. Shoffner for review and I was told I should be contacted by the end of the week to set up an appt. Here's hoping!

bad day

So, I have good days and bad days in terms of coping with our situation. Today has been a bad day. Lots of tears. I picked Eve up from school and snuggled with her on the floor. She tried to crawl to me and really just wiggled her butt and tried to move forward the foot or so to my arms. I sat her up in the Backjack chair (a floor chair with back support but no sides) to give her some Motrin because her last molars are cutting through on the top. She just sort of slumped to the right side. I straightened her up and in about 15 seconds she was slumping over again. In August, when we got this chair she could sit upright and stay that way. She seems to slump over in every chair now(high chair and green cube chair, too). Then she started to whine and I wasn't sure if she wanted to get on the floor or what. So I laid her down and of course she cried. I sat there rubbing her back and crying with her. I just think it's not fair to her. This poor kid didn't ask for this. I think I am also very scared about what this could be. If it's not CP, what is it? Jim and I talked about it tonight and he said he's been trying to figure out if there has been a turning point. She used to do much more. We can't think of one. It's only when we look back at pictures that we realize what she can't do anymore. Here's an example:

This picture was taken when she was 7 months old. Granted, she was placed in sitting, but look how straight she is sitting with her arms out. This next picture was taken when she was 15 months old.

Not only is she able to sit up straight, but she can drink from a cup without losing balance. Today it takes every ounce of concentration and effort to stay upright and not fall over. And she usually does fall over.


I am really worried about this kid. It's a constant strain to make sure I am searching all avenues. The good news about letting it get to me and having a bad day is that a better day is on the way. I seem to go through peaks and valleys, so at least I know I'll feel more positive soon.

camera

So, we bought a camera. After talking with some friends (Thanks, Joe and Eve), and consulting Consumer Reports, Amazon, and B & H camera - we decided on the Nikon D40. I am excited to play with it during the Christmas season.

Also, I finally got through to Dr. Shoffner's office. I sent our paperwork last week through certified mail and have asked the neurologist and pediatrician to fax Eve's records from the last 12 months to Dr. Shoffner today. After all of this information is received (and the referral from the neurologist) we can make an appointment. I plan to call on Wednesday to confirm that everything has been received. I don't have much confidence in the office staff (after leaving 3 messages with no reply). Keep your fingers crossed for us. I want to get this muscle biopsy done. I am ready for answers.

Christmas card attempts

So, we were going to send out a picture Christmas card again this year. Note: were. I don't even know where to start explaining my feelings about this. Yesterday, we dressed Eve up in her Christmas shirt and pants and I started snapping pictures of her on the couch. But Jim didn't like that, so he spent 30 minutes building an elaborate backdrop made out of wrapping paper and cardboard and props. Then we sat her in front of it and got so frustrated (all of us) that we gave up. We were all cranky, and didn't really know why. Jim, because it wasn't working - she wouldn't sit up, wouldn't smile, kept falling over. Me, because I didn't think we needed such elaborate planning. And Eve, because we were stressed and flashing lights in her eyes repeatedly.

So we tried again this morning. Same thing. Jim wanted it to be just so and have everything in place so we would have the best chance of snapping a shot with her actually smiling. Unfortunately, that is extremely difficult. #1, she doesn't smile on cue - we need to act like idiots to make her laugh. #2, our camera has that stupid 2 second delay, so that by the time it takes the picture, she's already turned her head and has her eyes closed.



I am nearly totally fed up and ready to invest in a Nikon or Cannon that instantly takes a picture.

Another issue we had was that Eve wasn't sitting up straight.



As you can see in these pictures that we did manage to get, she is slumped over and just looks...I don't know. We tried laying her down, but that looked even worse. So we gave up. And as I was sitting there crying, I realized what was bugging both Jim and I - we wanted her to look normal. A normal kid would stand in front of a tree or something and smile. A normal kid would...well, look normal. So, here are our attempts at a Christmas card picture. They are cute snapshots, but not cute enough that Jim and I want to make one of them the Christmas card image. So, this year I am sending regular cards. I went out and bought some at Hallmark. And I will just tell people that if they want to see her, they can look at this blog. And for those friends and family members that don't "do" computers, I will include a snapshot.

orthopedic dr

Today we went to see an orthopedic Dr in Atlanta who specializes in CP. I brought some of the test results with me (the basic genetic tests, the report from the spinal MRI, etc.) and he looked at them and at Eve. I also gave him the timeline I had written out about what has been done, and when. After listening to our story, he said that he got much more from what we said than from looking at Eve. Because we have seen regression, he doesn't think it is CP. He thinks that we don't need to go to CHOP (which we are going to ...it's all set and we are looking forward to it), but since we already have plane tickets, etc, he said it won't hurt, but they will probably say the same thing. I'll get back to that in a minute. This Dr. (Schmitz) said that we are doing all the right things to find a diagnosis and the next step would be a muscle biopsy (which we are still trying to coordinate - back to that, too). He said it might be Spinal Muscle Atrophy, but told me not to look it up and get scared - there are many types of SMA. He wants to see Eve in 6 months.

So, as Jim and I drove home we talked about it. He said that you never learn anything from one source, so it is still good that we are going to CHOP - even if they tell us the same thing. By the way, we'll be staying with my parents for almost a week and are very much looking forward to the visit to them and CHOP.

As for the biopsy and genetic testing: I have left 3 messages with Dr. Shoffner's office and they have yet to call me back. I am very frustrated by this. I am trying to complete the paperwork and have 2 simple questions. I will try calling again tomorrow morning and if I don't get through, I will call the neurologist and see if his office can get through for me. Who knows, maybe the one doc will tell the other that his office staff stink. I really want to get this done before the first of the year when our deductibles get rolled back.

All I got was a pair of ears...

How does the phrase go? "Uncle Scott went to Disneyland and all I got was a pair of ears." Something like that. Anyhow, Uncle Scott did go to Disneyland and brought back some Minnie ears for Eve. She really does like them.

Well, the blood test came back - no allergies. But the nurse said that Dr. Setia still wants us to avoid peanuts. I am not exactly sure why. Clearly she had a reaction - perhaps the test didn't cover peanut butter, just peanuts. Who knows. I'll ask him the next time we see him.

In the meantime, I talked with the neurologist's office. He talked with Dr. Shoffner (the geneticist) and he agreed to evaluate Eve. So, we are filling out a info packet and sending it in (along with a $250 deposit!). Hopefully she can be seen before Christmas. Dr. Shoffner is not in network, nor does he take secondary insurance or medicaid (which we now have), so it looks like this will be an expensive endeavor. I put a call into CHOP today but still haven't heard if we are definitely on for December.

Eve was in a really good mood tonight. She was laughing a lot and didn't have any tantrums. It was a really nice change. Slowly she's been sleeping later - since the time change, she's been waking up at 6am. This morning we made it until 6:20.