snuggles

Sunday morning snuggle time.
Eve has had a good weekend. She has improved in feeding herself - she is more willing to do it and has been semi-successful with the spoon and fork. I have been praising her in excess for her efforts. It worked when trying to get her to let the first solid morsel of food pass her lips, so why not try that method again? She seemed pretty pleased with herself. She has also begun saying juice ("ju") and banana ("nanna"). We took her grocery shopping today and the shopping cart cover seemed to work. She was quite content to ride around the store. Her latest thing that she does is kiss your neck when you hold her and give you zerberts there. It's too funny. I am sure she learned it from us - we do it to her all the time.

Last night we went to a baby dedication of some friends of ours. Afterward, some people broke out the guitars and started playing and singing. Eve managed to be sitting next to the base guitar and had a grand time strumming it. I think she really likes music. Oh, and I finally bought a Halloween costume - she's going to be a pumpkin. I found a plush pumpkin vest with a hood that she can wear over a black shirt and leggings.

We are so happy that the MRI is in less than 2 weeks. I am a little nervous because she has a pre-op appt 2 days prior and I imagine they will draw blood. It always seems to be so difficult to get blood from her, I hope it doesn't blow good spots to insert the IV on the actual day of the MRI. Oh, well. She will get through it. We also were able to get an appt with a pediatric orthopedic Dr who works with CP kids. That appt isn't until Nov 20th, but that's okay. At least we are moving forward.

MRI in October!

Good news: Eve's MRI of the spine under general anesthesia is scheduled for Thursday, October 11th at Athens Regional!

moving forward?

Well, the neurologist said that it's okay to get the spinal MRI done in Athens. I am going to call the pediatrician this morning. I hope they do it at Athens Regional because even if their waiting list is 3 months long, that's a heck of a lot closer than Atlanta. I also just got off the phone with the social worker from the neurologist's office. I don't have much hope that our Deeming waiver appeal will be successful. Oh well. She thinks that one of the hindrances is our lack of diagnosis. You think???? So, I am going to continue to work on that.

Speaking of...I talked with a friend (Tina) who works at Children's Hospital of Philadelphia (CHOP) and I feel like I have been stumbling around in a dark room and she came and showed me the door. She gave some great suggestions (e.g., seeing an orthopedic doctor instead of a neurologist - especially if this is CP or even if it is something to do with the spinal cord) and is going to help us get an appt at the CP clinic at CHOP. Apparently, the clinic would allow us to see several members of the team in one afternoon. If they don't feel it is CP, then they can make appropriate referrals. Tina really validated my feeling that I need professionals who are going to be motivated to help us find an diagnosis and a plan of action. I really don't feel that this is a major priority for the neurologist. I am very tired of the wait and see approach.

appeal process

I faxed a letter to both the neurologist and pediatrician asking for help with the appeal for the Katie Beckett waiver. I also faxed them the denial letter. I thought it would be best to fax the letters rather than call. This way I can be sure to say everything I want and they can look at it when they have the time. I tried to be as detailed as possible. In my letter I asked the Neurologist about having an MRI done in Athens. I asked the pediatrician if Athens does the MRIs under general anesthesia, if he would be willing to refer us to an endocrinologist, and if he thinks it is worth getting Eve's ears checked out to see if balance problems are impacted by her vestibular system. I'm keeping my fingers crossed that both men respond quickly.

application denied

Well, our application for the Katie Beckett/Deeming waiver was denied. I now have about 3 weeks to get additional information in as an appeal. This makes it even more frustrating that the MRI isn't scheduled until December. I think it doesn't help that we don't have a diagnosis. I just tried to reach the office manager at the pediatrician's, but she is out having a baby. Today.

Well, we met Tracey (Eve's PT) at the grocery store yesterday. We experimented with different ways to get Eve to feel more secure in the shopping cart (or buggy, as they say in GA). We started with a combo of towels wedged around her and a pool noodle on the handle. I think the fact that Tracey was there also helped - Eve had someone else to look at and it was a novel situation. So Tracey speculated that maybe part of Eve's problem was that she simply didn't want to be in the cart and maybe we could have some toys that she could play with as we shopped. Eve did pretty well as we went through the store. When we got back to the car we tried the shopping cart cover that I borrowed from a coworker. Eve did great! I think Jim may have been right about her not being able to see down. So, we are going to buy a shopping cart cover like the one we borrowed (we actually used to have one, but we lost it). I will also bring towels for support and some little toys for interest.

I also mentioned the idea of a second opinion (which my parents suggested). Tracey thought it was interesting. She said that usually parents get a 2nd opinion if they don't have a good fit with their Dr, but liked the idea of going with all our test results to a specialist in another major city (like Philly) for a consult. I also asked her what she thought was going on with Eve. I don't think she has given up on the idea of it being something metabolic, but her opinion is to wait to see what the MRI in December says. Jim and I might try to make an appt with an endocrinologist in the meantime, knowing that we probably won't get in to see one for months anyway. We are also still waiting on a decision from Dept of Children and Family Sercives (DFACS) about the Deeming waiver. If that comes through, it will pay what insurance doesn't pay. If we get turned down we will appeal. It would be helpful, though if it came through before the MRI and any other Dr appts (e.g. endocrinologist). Wish us luck.

December it is

So, a nurse from the Neurologist's office called today. She talked with the Dr this morning and he does want Eve to have the spine MRI under general anesthesia. She couldn't tell me why, however. So I asked if we could have it done in Athens, and she said he can't order it for Athens. I asked if the pediatrician could order it. She said he would need to see the films. I reminded her that he was able to have the films sent to him from the first MRI that was done in Athens. I also asked if we could have other testing while we waited. She said she would have to ask him. So I told her to ask him if he would be horrified at the thought of a spinal MRI done in Athens. Supposedly she will get back to me. Not the friendliest of women. Then we had Eve's pediatrician (Dr Setia) appt this afternoon. Turns out she has a sinus infection and needs an antibiotic (Amoxicilin). I asked about the antibiotic she's already on (Sulfatrim) for the kidney reflux. He explained that the Sulfatrim works on ecoli and there is no ecoli in her nasal area (thank God, right?). But he did say that the amoxicilin should cover for the sulfatrim for a few says, so I can stop that in the meantime. I guess it's a broader bacteria killer. I also filled Dr. Setia in with the latest from the Neurologist (Krawiecki). He said he would be happy to order an MRI, but he is just not sure if Athens does them under general anesthesia. He is going to call and check. Also, he reminded me that metabolic testing was done (in ohio) and came back normal. He said that what Krawiecki is doing is looking for things that are treatable. Because if it's not treatable, it doesn't matter when we figure out what she has. Except for my peace of mind, I reminded him. But I get it. Apparently the spinal MRI is looking for something treatable, so it is frustrating that it will take so long to have it done. I feel that it is a fine line between being an advocate for your child and a pain in the ass. I am caught between a squeeky wheel gets grease and catching flies with honey ...and being a big pain in the ass. I don't want to cross that line unless i have to. I want the office staff and nurses to want to help. Anyway, here are the pictures of Eve's AFO's and some pictures of Jim and I with her. You'll notice that both Jim and I got our hair cut. Actually, it looks like we got the same cut. :)

starting a blog

I have decided to create this blog as a way to update family and friends on the progress of our daughter, Eve. I also think it will be helpful for me to track her development. I am hoping to be able to update it frequently enough.

So that we are on the same page, Eve is developmentally delayed and we are searching for a diagnosis. We still haven't ruled out Cerebral Palsy, but we really don't seem to have leads other than that. She has had 2 MRIs of the brain, and both have been basically normal. So, there is no brain damage and no "white matter disease." The next step is an MRI of the spine. I am hoping the neurologist calls today so we can discuss it. As of right now, the MRI is scheduled for December 13th - 3 months away! The reason for this is because the Dr ordered it to be done under general anesthesia - which they only do for 6 patients a month - thus the long wait. However, if they can do it under conscious sedation (like the other 2 MRIs she's had done), then she can get an appt in about 3 weeks. So, I am hoping to get some answers today.

Other issues- shopping at the grocery store has become impossible by myself. Eve is so scared of sittting in the cart, that she clutches the bars for dear life and screams. I think it is a balance issue. I can't push the cart and hold her, so I am trying to figure this out. I am meeting the PT at the grocery store on Thurs to problem solve. We have already tried padding and cushioning to help her feel secure. Jim thinks it might be a height thing so we will try a cart cover so she can't see through the bars. I am also borrowing a sling from a coworker, so I can put Eve on my hip or back. Finally, we are going to try putting her in the big part of the cart with maybe a Bobby for support.

She has been walking really well with her AFOs (Ankle Foot Orthotics) and Jim and I have committed to really working with her on these. We want to schedule in time that she walks each day after dinner (in addition to at daycare) . She doesn't wear them all day because it makes it hard for her to crawl. Also, I think she is cognitively doing well. Last night at dinner I said, "Eve, use your other hand to eat. Try picking up your food with your other hand." I did not show her what I meant - I just used the words. And, wouldn't you know it - she did it! Not successfully, but she actually tried to use her bad hand to feed herself. I was very proud of her. She also seems to be talking more this week. She's been spontaneously naming things (house, door, etc) and definitely likes "Elno" (Elmo). She has started calling dinner "nin nin" which is really supposed to be "din din" (thanks, Jim). Actually, she calls every meal nin nin. So we are working on teaching her breakfast and lunch. We made progress with lunch. Oh, and she actually calls for her medicine (she gets a daily antibiotic for her kidney reflux). What a riot.

I am going to take her to the pediatrician tomorrow because she still hasn't totally shaken that cough. It's been over 3 weeks since it started, and I just want her looked at. I'll try to post pictures soon - especially ones with her walking with her AFOs.