Merry Christmas

Well, we are finally home from the holidays. We had our own family Christmas on the 21st (right before heading out to South Carolina). Eve got a dollhouse for Christmas.


Immediate infatuation. Hard to believe we tore her away so that we could leave to visit Grammie, Papa, Uncle Scott and Kirby.

We spent several days in SC, and had a great time. Papa made Eve a toy chest. It's totally amazing. We love homemade gifts. We chose a finish and will have a personal delivery soon. I'll take a picture of the finished product.



Then we got home and had visitors! Paul, Tossy, and Silas came for a short, but wonderful visit. It was so great to see them and to have them meet Eve. Eve was thrilled, too (although she doesn't look it in this picture).

We also went out to eat at the noodle house and Eve was so good! She actually sat in the restaurant highchair (with a jacket wadded up behind her back for support). I honestly don't remember the last time she sat in one of those wooden highchairs without screaming because she was scared. So that was a nice element to the night out. It's so fun to have visitors. You know our door is always open. Happy New Year!

visit to CHOP and Oma and Pop's house

Last night we got back from our trip to NJ. We flew up on Saturday and had a Christmas celebration with my parents and my brother, Trina, and Alex. It was so wonderful that Dave, Trina, and Alex were able to drive up from VA and visit. Otherwise, I am not sure if we'd have been able to see them until their new baby is born (March). My friend, Allison, and her husband (Jay) and son (Dylan) were able to come over, and the next night Jim's brother, Scott, came by for dinner.

Family portraits using the timer

Alex

Pop and Alex

Alex, Eve, and Oma - sweet harmony

Pop, Alex, and Eve

Dylan, checking out the train

Oma and Eve share a laugh


Dave and Jim "helping" Alex with some legos


We had a fabulous time and enjoyed ourselves immensely spending time with family and friends. But we had to adjust to the cold!! I think the whole trip was great with the exception of the return flight (an hour in the security line and numerous delays - we didn't walk in the door until 12:30am).

Tuesday was also exhausting. That was the day we went to CHOP. When we had originally set up this visit, we thought Eve had CP (that's what the neurologist was saying). But, as you know, that has come into question. Because of that, we did not see any docs on Tuesday because if we are not dealing with CP, why would we waste the time of the CP docs? Plus, some major strings were pulled to get us into there in the first place. So, instead, we saw a PT and OT who were pretty amazing. The examined Eve (as much as she allowed them - she still has a lot of fear of medical settings) and made some really great suggestions. The PT gave us some exercises to do with Eve, suggested we get better orthotics for her (hers are not optimal), and reminded us that she is still a 2 year old and is not the boss (even though we might be inclined to baby her because of her disabilities). He also recommended a hip xray (to be able to monitor her hip development) and suggested certain pieces of equipment. The OT then came in and within moments constructed 2 simple fabric strips, wound them around Eve's hands, fastened them with Velcro and it improved her thumb positioning. She also showed us several pieces of equipment and recommended that we try to order 4 pieces - a gate trainer (which is like a walker with a suspended seat), a stander (which straps Eve in so she can stand and help those hip sockets form), a positioning chair (that helps her sit using better posture), and a bath chair (that sort of looks like a mesh beach chair but will help us with baths).

Now, the first three pieces of equipment have been mentioned by the PT in GA, but it has been more casually mentioned and certainly not as aggressively (I'm not intending a negative connotation here). It is my understanding that the PT here has been more conservative about ordering the equipment because it is so very expensive and we don't truly know what's best for Eve yet. If the insurance company only allows one piece every 3 years, what if we use that allowance for something that is not the best for Eve. I talked to Eve's GA PT and she agreed that we can certainly order these things and see what happens. She also said that there is a equipment representative from Atlanta that makes house calls for fittings, ordering, etc. Basically, the process will take several months, but he comes out, measures Eve, we choose the exact equipment, and he does all the legwork. Then he gets back to us and tells us what insurance and medicaid are willing to pay and we make our decisions from there.

So, basically, we've got the CHOP people saying we should worry yet if the insurance companies say no - we need to ask them to find out. Eve needs assistance no matter what the diagnosis and prognosis is, so why drag our feet? Let's get moving on things that will make her more independent.

I am probably forgetting a lot of information here. But, really, that's the nutshell. It was extremely overwhelming. I just want to do what's best for my kid, and it's worrisome that I might have been overlooking things or losing time on strengthening her muscles and making her more independent. So all in all, it was a great visit. We are ready to move forward. Oh, and the appts with Shoffner are in 2 weeks. I got a letter today telling us where to go and when. It's going to be a long two days.

I hope you all have a fabulous Christmas and New Year if I don't get the opportunity to talk to you. Thank you for keeping tabs on what's been going on with Eve.

Ok, Ok. A certain someone has been bugging me to post pictures. Here you go. Let's start with the shootout between the new camera (Nikon D40 SLR) and the old point and shoot (Olympus Stylus). First, the point and shoot:


Not bad, but check out the Nikon!

If you look at her hair you can really see the depth in the Nikon. Oh, and here are some more shots of us messing around with the new camera....and Eve. I guess Jim was inspired to recreate the movie "Signs."




These next two shots are of this amazing sunset. It was way cooler in person.



Finally, Eve's favorite thing to do lately is stand on the ladder out back. Unfortunately, it's been getting dark so early we often end up doing this at dusk (although it looks darker here). But, it makes me happy because we put on her leg braces and she walks a bit to the ladder (with significant help). Oh, and this picture was taken 2 nights ago. Notice the short sleeves. That's right. December 10th and it was freaking hot. It's been about 77 or so each day this week. Are you kidding????

Dr. Shoffner on CNN

Dr. Shoffner was on CNN this weekend. There was a piece on mitochondrial disease on House Call with Dr. Gupta. This family searched for 14 months for a diagnosis for their son before Dr. Shoffner found the problem. This particular kid does not seem to have the same issues as Eve, but it was really neat to see Dr. Shoffner on TV talking about mitochondrial disease. How often is your Dr. on CNN?

Genetic testing scheduled!

I got through to Dr. Shoffner's office today and was able to get our appointments scheduled. Unfortunately, they are after the 1st of the year, but I kind of expected that to happen. Apparently, there were some scheduling issues that just popped up and prevented more appointments in December. No big deal - We would have met the out of network deductible at some point, and these appts will take us WAY WAY over that amount.

So, on January 8th, we have the 2 hour consult with Dr. Shoffner in Atlanta. The following morning we go back to Atlanta for the muscle biopsy (outpatient surgery that should last 45-60 minutes). Apparently we will get a 75 page report, and the Dr is ridiculously thorough. Other geneticists do not test for the amount of things that Shoffner will, nor give such a lengthy and detailed report. Hey, if she's going to get a chunk of her thigh taken out, let's make it count!

I asked how much the biopsy would cost. Are you sitting down? Seriously, are you sitting down? 15-20K. Yes, that's $15,000-$20,000. Wowee. But I don't think it's as bad as that makes it seem. Shoffner is out of network. So, after deductible, insurance pays 60%. Shoffner's office has contacted insurance and is asking them to pay 80% (in network rate) and citing medical necessity, etc. They are waiting on decision about that. So that brings it down to 4-8K out of pocket. Then I checked again to be sure they don't take a second insurance (because we do have medicaid now because of the Katie Beckett waiver). The office manager said they don't do secondary insurance, but they will give me all of the information to file it myself. Sooooo....that could mean I would pay much much much less. It's possible I would pay nothing. Possible. But I am not getting my hopes up. I refuse to put a price on my child's health/diagnosis.

Anyhow, that's the latest. I don't know how long it takes to get the results of the biopsy, but at least we know our next step is less than a month away. Plus, we still have CHOP coming up. Oh, and the new camera came!!! I feel so kick-ass using it. I'll have to have a shootout with the old and new camera and post the results.

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.

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.

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. :)