halloween

Here are some Halloween pictures of Eve. You can see how thrilled she is with the holiday. We went to downtown Watkinsville to see all the trick or treaters getting candy from the stores. She seemed to like looking at the costumes and got lots of "Look at the cute baby" comments from other people. I guess because I had to push her in the stroller she looked a lot younger. It was tough to see kids younger than her walking around in their costumes.



The neurologist also called today. It was good to talk to him. He went over the MRI results (nothing new...all looks good). He said there still is a possibility that she has CP and is among the 40-60% of those with CP that there was no known cause of it. Then he said that there is an option to do further genetic testing (other than the basics that the pediatrician ordered last year) and and mitochondria testing. He said they will probably do a muscle biopsy and while Eve is under anesthesia, might decide on other tests. However, that testing might not tell us anything. We may go through all of that and still be no closer to a diagnosis. I told him that we would still learn something - even if it's just ruling things out. He told me that all the time he has this discussion with parents to warn them that they still might not find anything, and when they don't, they ask him why they went through all that testing. So, he said if I ask him that, he will remind me of this conversation. I laughed and said that was fair. He is going to talk to a Dr that he used to work with at Emory (that is since in private practice in Altanta) who is a geneticist, neurologist, and mitochondrialist (is that a word?). Anyhow, apparently he is the MAN. He's the only guy in the southeast that does this. The neurologist will share Eve's case with him and set up an appt for us to see him. He will know what tests to order,etc. So, I got off the phone feeling very relieved. I'm still in a bit of a funk (touched off by yesterday's traumatic blood draw), but that's one less thing to worry about.

possible allergies

On Saturday we gave Eve a Peanut Butter and jelly sandwich. She broke out in hives all around her mouth and chin - basically everywhere the pbj touched. So we called the nurse hotline and watched for anaphalaxic symptoms (swelling, difficulty breathing, etc.) but didn't see any. The hives went away in about 45 minutes. So, we went to the pediatrician yesterday. He ordered a food allergy blood test (I think this particular screening looks at about 20 possible allergies). We went today to the hospital lab outreach building to get the blood drawn. I was apprehensive because historically Eve is difficult to draw blood from. I can't tell you how many times I have watched people put a needle in her and dig around for the vein while she is hysterically screaming. Well, I got to see it happen again today. They finally sent us over to the actual hospital to the pediatric ward to get it done. Eve of course was completely beside herself with fear and screamed so hard she was really just screeching. But, the nurse was great and got it right away and did it as quickly as possible while I and another nurse pinned Eve down. The poor kid was a mess. While we wait for results we are to read labels and give her no peanut products whatsoever. The Dr. also prescribed an epi-pen, but said we can wait to get it for right now -as long as we avoid peanuts until we get the results back.

I have also put in another call to the neurologist because he still hasn't called me back. I am feeling very frustrated and am really tired of being patient. I really don't know what else to say...

Here are some pictures of Eve.


This one is the worst (best?) bed-head I have ever seen on her. You really have to look, but you can see the height she has achieved.

Still waiting on a call from the Neurologist. I also have a call in to CHOP to schedule a December appt. Very excited about the prospect.

Katie Beckett approved!

Yesterday we got the news that we got the Katie Beckett waiver! I am not exactly sure what this means beyond lots of help with medical bills. Which is good because it looks like more testing is in the works.

I met with the pediatrician yesterday and he must not have carefully read the last report the PT sent, because he was surprised that Eve has regressed since her evaluation last year. Then he freaked me out by saying that was "terrible, terrible news." If it is CP she shouldn't regress. He told me to ask the neurologist for further testing (looking for causes of regression) rather than him because he is afraid he wouldn't order the right tests. He also told me that we need to see the neurologist soon (and not wait until our January appt). He said I should call and ask for an appt right away - with Krewiecki or with anyone in his office. Then he said he would call - translation: his office staff would call their office staff.

I am not satisfied with the results. The neurologist's office said that Eve can't see another Dr in the group because they don't switch around patients. The earliest appt is in 4 weeks (which I took, but found out later I can't make) or we are back to January. I am waiting for the Neurologist to return to the office tomorrow. I am hoping he calls me and perhaps orders tests based on our phone conversation. I will also ask if he can see us sooner than January. It's weird that at one time CP seemed so terrible (in comparison to delayed myelenation) and now we are hoping for it (in comparison to some degenerative disease or genetic syndrome). I really hate not knowing what is happening to our daughter. I am looking forward to getting beyond diagnosis and focusing on treatment.

Dr on vacay

The neurologist is out of the office until Thursday, so I won't hear before then what he thinks of the MRI and the next step. I have made an appt with the pediatrician for Tuesday, however. I am planning on talking to him about his impressions about Eve and what he thinks our course of action should be. Should we press the neurologist? Should we look into an endocrinologist? Hopefully I will get answers somewhere.

We had a mini communication break through last night. Lately, when Eve finishes her dinner, she points to the fridge and says, "Ah-ssssssss" over and over. We kept thinking she was saying cheese (which usually sounds like chssssss), and that she was changing how she said it. Well, last night she is refusing her dinner plate (after eating about half) and starts saying "Ah-sssss". Jim looks at her and says, "Do you want something else?" and it clicks with me. He always asks her that. She's been saying "else" this whole time. She wants else. Usually, it's fruit that we keep in the fridge. It was like I got hit over the head. Of course!

evaluation meeting

Well, we met with the Tracey (PT) and Beth (Early Intervention Specialist) today. It wasn't as bad as I thought. I think they could have given us the report and explained over the phone if we had questions.

It is written in a negative style, really pointing out Eve's deficits and the ground that she has lost. This was done for 2 reasons - to help with the Deeming waiver appeal and to help Eve's doctors see that we really need to do something here. Rather than type out the age equivalence for her specific motor skills and other areas, I will simply say that she is WAY behind. But we all knew that. In fact, she is behind in every single area, even cognition (she is below the 10th percentile on all except cognition). HOWEVER, the way that cognition is tested relies, in part, on motor skills. If she can't point to an object, she can't demonstrate she knows it. So, the team thinks that her cognitive skills and social skills are ok, but the items that she didn't do well on were items that required some sort of physical response.

So, I am faxing the report to the pediatrician and the neurologist tomorrow. Tracey will call the neurologist once he gets the films from the MRI and discuss the evaluation. I think she will push for another test - some sort of plan of action. In the meantime I send out the appeal tomorrow and will begin work on a timeline of all the testing (and results) and doctor appts Eve has had. Something to bring with us to all Dr appts to show what we have had done and when.

Also, we started video taping Eve (per Tina's request) as a precursor to a consult at CHOP. Just to make sure we don't make a trip to the CP clinic unnecessarily. Sooo... that's it for now.

MRI

It was a long day at the hospital (9:30am-4:30pm), but we all survived. Eve did really well. They had her under anesthesia for nearly 4 hours. I guess the process took a very long time. Everyone at Athens Regional was fantastic. Very concerned about Eve and very attentive. She took a while waking up and was very groggy. She slept the whole way home. Poor thing was dehydrated from not being allowed to eat or drink since the night before and sucked down lots of pedialyte. I think the Docs and nurses all fell in love with her. The anesthesia Doc seemed so happy to carry her in to be put to sleep. He made a comment about it being so long since his boys were that size. And of course she was all drunk from the sedative they gave her, so she was snuggly and floppy.

I was able to get a copy of the results and a disc of the images so that we can take them to future Doctors (CHOP and/or the orthopedic Dr.). I read the report and they found nothing. No masses, no tumors, no abnormality. We'll see what the neurologist says when he looks at the films. So that's good....but where does it leave us?

We are meeting on Sunday with the PT and developmental specialist (we were supposed to try to meet today, but the MRI took too long). They redid Eve's evaluation in preparation to appeal the Deeming waiver denial. They don't want us to read it until they explain it to us. That freaks me out. Tracey mentioned that Eve is doing worse in some aspects than she was a year ago. That doesn't make me feel good. Anyhow, I'll know more about it on Sunday.

So, here are two moments of levity for the day:
1. Jim fell asleep in the family waiting room and started snoring. Loudly. It was pretty funny. I had to keep waking him up as people looked at him. Then I had to wake him again when the Doc came in to tell us Eve was in recovery - Jim told him that his own recovery from anesthesia was going well.
2. Jim got in trouble. The pull of the pulse ox (sp? that thing they put on your finger to test oxygen in blood) was too great. He had to put it on his finger when the nurses weren't looking. Of course when he took it off he set off all kinds of alarms because the machine thought he was dying. I made him go tell the nurses what he had done. His face was so red!! I just laughed and laughed.

visitors

Grammie and PaPa came for a visit this weekend. I'm not sure who was more excited about it - Eve or them. Kirby came, too. Jim and I got to go out on a date, which was so much fun. We ate like pigs all weekend.

little mimic

Yesterday, Eve and I were in the car and a good song came on the radio. I started snapping my fingers to the beat. I looked in the rearview and Eve was looking at her own fingers and moving them with a look of serious concentration. She was trying to snap! It was too cute.

This afternoon the PT and Developmental specialist are coming over to redo her evaluation. They moved it up so that we can have the new evaluation to turn in with the Deeming waiver appeal. I think her delays are MUCH more pronounced than they were a year ago. Hopefully this will help our case.