new chair

Eve's new wheelchair was delivered last week. I'll post pictures soon, but if I wait to write until I have pictures, it will take forever. I wanted to jot down my thoughts first.

So, it's been a frustrating experience. It's not any one particular bump along the way, but all of them combined that have been frustrating. The whole process took 6 months because of several issues including: a letter that sat on a desk for 2 months, an insurance issue, a tech getting into an accident, and a busy DME provider. Anyhow, during those 6 months I managed to convince myself that this chair would be the answer to all our chair problems. It would be perfect - just the greatest. Needless to say, there is no perfect chair. I totally had unrealistic expectations, so I was bummed when they weren't met. The chair fits Eve very nicely, and she looks more comfortable in it. It has great features (including the ability to tilt) that will grow with her and her increased needs. However, the handles are too high for me to comfortably push (but they need to be high when the chair tilts), the footplate is not properly adjusted (it goes behind her feet), and it's a royal PIA to get in and out of the car. I have to take it apart and fold it down, and it is wicked heavy. It makes quick trips to the store out of the question. There is nothing convenient about it for us. Soooo....I spent the weekend pretty depressed about it. We didn't even use it. I sent it off to school today and got a call from the PT. She talked to me about the issues with the chair (she also thinks the tray needs to be improved). I mentioned the struggles we are having. When the DME provider dropped off the chair, she mentioned that she has had luck in getting a special needs stroller approved for families that cannot transport the wheelchair in their cars. The PT talked to her about this and Diane (DME) will be coming to school on the 12th of May to adjust the chair (the earliest she can come). She will bring a letter with her that the PT can use as a template so that insurance will cover the stroller. I am hoping she can bring some sample strollers for us to look at that morning. I am feeling much more encouraged.

Last week, Eve was casted for new AFO's. We went to the new orthotics place (which I like much better). The orthotist is sending out the molds to Cascade (a company in WA) that will make the AFOs (actually they are DAFOs). These will be like the ones she got in GA. I am very excited about that. Finally, last week the old orthotics place called to tell me that Eve' Benik wrist splints are in (5 weeks after they were supposedly ordered - should have taken 2 weeks). They wanted me to drive the 30 minutes to pick them up. I don't think so. Send them in the mail. The whole process has been 4.5 months for splints that (if they were ordered correctly) should have taken 2 weeks.

Eve is doing well. Growing like a weed. Happy. Sleeping a lot lately.

3 parent IVF

I'll compose a longer post soon, but I just wanted to pop on here for a minute. I'm on my way to bed, and for some reason I just happened to turn on BBC World News America (which I never watch). They were running the following story about research on possibly preventing mitochondrial disease by doing a 3 parent IVF procedure:
http://news.bbc.co.uk/2/hi/health/8619533.stm
Obviously, this would only prevent mito if the cause was a (non-sporadic) mtDNA mutation. It's very interesting, but I am not sure how I feel about it. I was so shocked to see a news piece about mito that I totally burst into tears. But, it's also very late and I am very tired. Off to bed...

AFOs and UTI

On Monday, we had our appointment with the new Prosthetics and Orthotics place. It was a great experience. The orthotist, looked at Eve's braces (which have been irritating her) and her legs and feet. He adjusted the braces to buy us some time, and is going to try to get a new set of AFO's approved by insurance (since it's only been a few months since we received her last pair). We're hoping to get a pair made by Cascade and this office does order from Cascade. I felt very much relieved that this is a much more professional and competent office.

Also, I had to take Eve to the pediatrician yesterday. She didn't sleep well Monday night, and woke up with the tell-tale stinky-pee diaper. Yup, urinary tract infection. Low grade fever by the afternoon. So, the doctor had to catheterize her for a sample, and preliminary results showed white blood cells. Final results will be in on Thursday morning. We started her on antibiotics last night.

All else is well, but having back to back days with medical appointments (with one being unexpected) reminded me of just how healthy she's been this year. This is what it was like last year. You never knew just when you'd need to see the doctor and there was an element of lack of control. So, I am so very grateful for how well she's done this year.

Josie is two!

Josie turned 2 on the 17th. Happy Birthday, Jo Jo.

visit with G and P

Grammie and PaPa came for a visit last week. We all had a wonderful visit and Eve especially loved spending time with her grandparents. She squealed with happiness when they took her out to the bus each morning. It was if she was showing them off.

All is well with Eve. We went for her GI checkup last week and the doctor taught us how to change her g-tube button (it needs to be done every 4 months or so). Now we don't have to make a trip to his office 3-4 times a year. Also, after much frustration with Eve's Orthotics place (including waiting 2 months for hand braces that only take 2 weeks to be delivered from the company that makes them - and then to fine out that the guy ordered the wrong braces.), we're going to a new orthotics place tomorrow!! Eve's AFO's are irritating her feet and her PT recommends that she doesn't wear them anymore, so hopefully we can get it fixed or order new ones (and hopefully insurance pays for it).

Happy Eve

I just wanted to mention that Eve had a great weekend. We realized during dinner on Sunday that she didn't cry once that day. I'm sure this isn't the first time this has happened - just the first time we've noticed. Usually she gets upset over something. She can't tell us what she wants so she will get frustrated. But not on Sunday! I think she's really growing up. I still can't believe that she's 4 1/2.

wheelchair will be delivered

So, the new wheelchair will be delivered on March 25th!!! Only 5 months after we ordered it. Grrr..... But I'm happy it will be here. I shouldn't complain.