Lily's Lyme's test came back negative...YAY! One more thing ruled out. But that still leaves us with no "official" reason for her issues. PT Jason is fairly certain it is from her injury to her back.
Dr. Edgar's office finally called back 4 days after I initially contacted them about getting a blood test ordered and RSD. He would have ordered the test, but I told them that she had already had the test done and we were waiting for results. As for the RSD, we were to contact the Milwaukee Children's Hospital regarding that. We can't drive that far, so we will just be dealing with it as we have been.
Friday, June 12, 2015
Thursday, June 4, 2015
June 3 ~ 8th grade promotion!
With all that has been going on with Lily the past few months, she has been great keeping up with school. Sometimes she fell behind, but when we worked it out, she got back up and went for it!
Last night was 8th grade promotion. Lily was beautiful! (well, she always is though!) We are so proud of the young lady she has become. Next year she is a Freshman!! Yikes! All of the 8th graders also received a $1000 scholarship! Awesome!
Last night was 8th grade promotion. Lily was beautiful! (well, she always is though!) We are so proud of the young lady she has become. Next year she is a Freshman!! Yikes! All of the 8th graders also received a $1000 scholarship! Awesome!
Blood work for Lyme's
We finally got the order for Lily to have a tick-bourne illness blood test to be done. It is possible that her neurological issues are coming from Lyme's. If it is, then she will start on an antibiotic regimen and hope it takes away her symptoms. If not, then at least we have one more thing ruled out.
Her AFO use has been limited. She wore it for a few hours the other night and ended up with a blister on her heel, so we have to wait for that to heal before she can wear it again. Plus she hates it. I don't blame her.
Her AFO use has been limited. She wore it for a few hours the other night and ended up with a blister on her heel, so we have to wait for that to heal before she can wear it again. Plus she hates it. I don't blame her.
Tuesday, June 2, 2015
6~1 PT
Jason really feels that Lily has RSD. So I have put in a message to Edgar, Lily's neurologist. I called Dr. Edgar's office before she even started PT regarding a diagnosis of RSD, but was told by his nurse that it wasn't necessary at the time and that he wanted to see her for a follow-up in 3 months. I'm hoping now that the PT sees it, he will diagnose it.
PT is going well. Between TDN, what Jason is doing, and the exercises Lily is doing at home, her arch length is elongating towards a more "normal" size. When she first started, the difference in arches was over 2 inches. Now, there is a difference of about 1-1.25 inches. Yay!! Let's hope it continues.
PT is going well. Between TDN, what Jason is doing, and the exercises Lily is doing at home, her arch length is elongating towards a more "normal" size. When she first started, the difference in arches was over 2 inches. Now, there is a difference of about 1-1.25 inches. Yay!! Let's hope it continues.
May 30 ~ Stupid Bunion
Lily was told to wear her AFO for an hour or so a few times a day to break it in. We didn't think about the DAFO at night, and Lily wore it all night. At about 4 am, she woke up with her bunion burning and hurting. Guess no DAFO for full nights either yet.
She did, however, figure out that she could wear the 1/4 gel sock that was purchased when we went to the first podiatrist appointment at the beginning of March. Hopefully she can wear the T-DAFO longer now.
She did, however, figure out that she could wear the 1/4 gel sock that was purchased when we went to the first podiatrist appointment at the beginning of March. Hopefully she can wear the T-DAFO longer now.
May 29 ~ Orthotics
Finally, after more than a month, Lily's custom orthotics for her foot came in! She has a Cascade Turbo DAFO 4. She wears the smaller part during the day, and the larger part with the smaller part while sleeping. She was supposed to get 3 long socks specifically made to go with the T-DAFO, but insurance felt it was unnecessary. So we have to find some for her.
Ross, the orthotist, tried to get the AFO to fit in her nice Asics. Try as he may, it would not go in. We thought it would work as her right foot is 2 inches smaller than her left foot, and her shoes were both the size to fit her left foot. She also tried her sandals, which have elastic and can stretch farther. No go.
Finding a pair of shoes to fit over the AFO was a pain in the butt. We tried Target first. If you need two different sizes of shoes, they will split them and sell only one mis-matched pair. Nordstrom's also does, but we don't have one anywhere near us. Target had absolutely no shoes. They were all high-heals, sandals, or flip-flops; none which would work. Off to the next store.
Shopko had a nice selection of shoes in their Payless area. We spent nearly 2 hours looking and trying on shoes. Regular tennis shoes just wouldn't work. Slide on cloth shoes wouldn't either. The only ones that fit decent were the Women's Retro Airwalk Oxford's. Of course in the camo print.
 |
| AFO worn during day |
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| SMO snapped on to AFO for at night |
Ross, the orthotist, tried to get the AFO to fit in her nice Asics. Try as he may, it would not go in. We thought it would work as her right foot is 2 inches smaller than her left foot, and her shoes were both the size to fit her left foot. She also tried her sandals, which have elastic and can stretch farther. No go.
Finding a pair of shoes to fit over the AFO was a pain in the butt. We tried Target first. If you need two different sizes of shoes, they will split them and sell only one mis-matched pair. Nordstrom's also does, but we don't have one anywhere near us. Target had absolutely no shoes. They were all high-heals, sandals, or flip-flops; none which would work. Off to the next store.
Shopko had a nice selection of shoes in their Payless area. We spent nearly 2 hours looking and trying on shoes. Regular tennis shoes just wouldn't work. Slide on cloth shoes wouldn't either. The only ones that fit decent were the Women's Retro Airwalk Oxford's. Of course in the camo print.
May 28 ~ PT with TDN
Lily had the Dry Needling done with Jason today. It isn't supposed to be painful, but I guess to Lily it was. I think it's due to her RSD, which hasn't actually been diagnosed by her neurologist.
Jason asked Lily if she had been tested for Lyme's, as she presents with many of the neurological symptoms that can come with it. She never has, and because he isn't an MD, he can't authorize blood work for it. So I contacted our clinic and am still waiting to see if her GP can authorize it, or if we have to go through her neurologist.
Jason asked Lily if she had been tested for Lyme's, as she presents with many of the neurological symptoms that can come with it. She never has, and because he isn't an MD, he can't authorize blood work for it. So I contacted our clinic and am still waiting to see if her GP can authorize it, or if we have to go through her neurologist.
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