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 |
 |
| 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.
Monday, May 25, 2015
May 22 ~ PT #3
Although the pt and exercises seem to be helping, Jason feels Lily would benefit from Trigger-point Dry Needling.
"TDN is an effective therapy to treat muscular tension and spasm which commonly accompanies conditions such as arthritis, nerve irritation, muscular strain, ligament strains and herniated discs."
Taken from : What is TDN?
At her next appointment, which is May 28, she will be having the TDN done. Hopefully it helps!!
"TDN is an effective therapy to treat muscular tension and spasm which commonly accompanies conditions such as arthritis, nerve irritation, muscular strain, ligament strains and herniated discs."
Taken from : What is TDN?
At her next appointment, which is May 28, she will be having the TDN done. Hopefully it helps!!
May 19 ~ New DAFO design/PT #2
Hanger Clinic called this morning letting me know the pattern Lily had picked out for her DAFO was discontinued, so she would have to pick out a new one. After therapy, we went through and she chose "denim". I hope she likes it! We had to mover her pick-up appointment back though to Friday May 29, as the DAFO company was short staffed.
I was finally able to attend Lily's PT today. Jason is a super great guy, and really knows what he is talking about. He is DPT, and also is involved with the American Physical Therapy Association, the Wisconsin Physical Therapy Association, is a Certified Myofascial Trigger Point Therapist, and Certified in Functional Movement Systems.
He looked at Lily's pictures of her back injury, and noted it ran from T12 down through L5. L3,4, and 5 is where he is noting trigger points and nerve damage in her back. So he said it is very likely that is where all of her symptoms are coming from. He's a little baffled by her whole right-sided hemiparesis, but the arm is not really affected as bad as her foot is. Jason is going to do some research and see what he can find. There is 2-2.5 inches difference in her left foot arch and her right foot arch.
After working with her for a bit, Jason noticed Lily's muscles were starting to "work together a bit more", which means her PT and exercises she is doing are helping somewhat. He did a lot of work with her back, shoulders, and calf's.
After therapy, we were talking a bit. I asked Jason about RSD, and if he felt she had it. He said definitely. She has a chronic condition, and it is going to require constant physical attention, and making sure she follows through with it. Also, the knee injury she had in January, 2014, plays a part in why her foot is so bad. It didn't cause the pes cavus, but had a lot to do with it.
I was finally able to attend Lily's PT today. Jason is a super great guy, and really knows what he is talking about. He is DPT, and also is involved with the American Physical Therapy Association, the Wisconsin Physical Therapy Association, is a Certified Myofascial Trigger Point Therapist, and Certified in Functional Movement Systems.
He looked at Lily's pictures of her back injury, and noted it ran from T12 down through L5. L3,4, and 5 is where he is noting trigger points and nerve damage in her back. So he said it is very likely that is where all of her symptoms are coming from. He's a little baffled by her whole right-sided hemiparesis, but the arm is not really affected as bad as her foot is. Jason is going to do some research and see what he can find. There is 2-2.5 inches difference in her left foot arch and her right foot arch.
After working with her for a bit, Jason noticed Lily's muscles were starting to "work together a bit more", which means her PT and exercises she is doing are helping somewhat. He did a lot of work with her back, shoulders, and calf's.
After therapy, we were talking a bit. I asked Jason about RSD, and if he felt she had it. He said definitely. She has a chronic condition, and it is going to require constant physical attention, and making sure she follows through with it. Also, the knee injury she had in January, 2014, plays a part in why her foot is so bad. It didn't cause the pes cavus, but had a lot to do with it.
Thursday, May 21, 2015
May 17 ~ A Special Day!
Ok, so this has nothing to do with Lily's health. Just a nice positive post.
Lily participated in the Rite of Confirmation today at church. Her Faith Statement was beautifully written, and it showed the entire congregation how much faith that young lady has. She truly is a blessing to us! Congratulations Lily!
Lily participated in the Rite of Confirmation today at church. Her Faith Statement was beautifully written, and it showed the entire congregation how much faith that young lady has. She truly is a blessing to us! Congratulations Lily!
Wednesday, May 20, 2015
May 15 ~ First Physical Therapy Appointment
Lily had her first PT today, and it was very interesting, or so I'm told. It was the first appointment since we started this journey with Lily that I didn't take her to. :( And dad is not great at remembering details or asking questions.
Jason, the PT, did lots of work on her, and said he feels she has nerve damage in the L3, 4, and 5 area. Timothy (dad) and Lily both told him that's where she fell a few years ago (2007) and hurt her back along the spine. He asked them to have me email a picture. Here is what she did:
It was discovered that Lily doesn't have any balance for her hips either. One hip is also slightly off than the other, but that is due to the tightening of the muscles.
She was given some exercises to do, so I hope she follows through with them (she doesn't take well to us telling her what to do).
Hopefully I can attend her next PT on Monday and ask lots more questions.
Jason, the PT, did lots of work on her, and said he feels she has nerve damage in the L3, 4, and 5 area. Timothy (dad) and Lily both told him that's where she fell a few years ago (2007) and hurt her back along the spine. He asked them to have me email a picture. Here is what she did:
She was given some exercises to do, so I hope she follows through with them (she doesn't take well to us telling her what to do).
Hopefully I can attend her next PT on Monday and ask lots more questions.
May 6 ~ Ugh. Insurances.
The pediatric orthopedic surgeon's office finally called back today, but I never did get back to them. The cast was already off and I wasn't about to go through putting another cast on Lily.
Then Hanger Clinic called stating the insurance she had listed was saying she was no longer covered. Ugh. Insurances. Love them and hate them. She had just started our claim for it, and kept getting denied. Our review was due April 30th and I had all the proper papers in. So I called, and they took their precious time putting the information in to our account. So they had to put a rush on it. If she had done the paperwork the week before like she should have when we were there we wouldn't have had this issue. So getting the orthotics was pushed back a week for sure.
Then Hanger Clinic called stating the insurance she had listed was saying she was no longer covered. Ugh. Insurances. Love them and hate them. She had just started our claim for it, and kept getting denied. Our review was due April 30th and I had all the proper papers in. So I called, and they took their precious time putting the information in to our account. So they had to put a rush on it. If she had done the paperwork the week before like she should have when we were there we wouldn't have had this issue. So getting the orthotics was pushed back a week for sure.
Tuesday, May 19, 2015
May 5 ~ The cast must come off!!
Lily came home from school today saying the fiberglass was breaking off in between the sock they used to protect her skin at the top of the cast and was scratching her. It was also pulling apart half-way down, and the bottom of her toes was breaking off and scratching her toes.
I called her orthopedic surgeon to see if she could advice our town's ER to take it off (we live an hour from where she gets casted and wanted to get it done in our town). The nurse finally called back 1/2 an hour later (it was 4:30 by then) and insisted she be brought in Wednesday to have the cast removed and a new one put on. I tried to explain that casting Lily was OUR choice, and she didn't need it on the full two weeks. I argued with her for 5 minutes and she finally said she would try to get ahold of her ortho surg. who was out of the office. We waited and waited, but she never called back. Of course, why would I expect anyone to call back?
Well, it kept bothering her, so at 7, I decided to just take her in to the ER and have it removed. The ER doc didn't want to remove it, but decided to "reinforce it" instead. He put a few pieces of stretchy cotton in between Lily's leg and cast, and did the same at her toes. Then he layered MORE fiberglass on the cast! He "forgot" to smooth it down, so the fiberglass dried sticking up. What was his solution? To put MEDICAL TAPE around the entire foot to fix it. We left hoping it would work.
Here is his handywork:
We weren't even out of the ER and in to the van, and the cotton strips that he put in were rubbed loose and coming apart. Pretty useless. We got home and left it for a bit, but it all came out, and was still scratching her.
So, we decided to remove it ourselves. By 2 am, we were both tired and cranky. We had gotten it all off except from her ankle to toes. There was about 1 inch removed from there but couldn't get it all off. I decided to go back to the ER and make them removed. I told them they needed to remove the cast and we weren't leaving until they did. When I explained the cotton had come loose before we even left earlier, she said "well you should have just come back in and we would have taken it off." I don't believe they would have.
Anyway, we got home at 3:30 am from a LONG night. Cast was off. Now we wait until her orthotics come in.
I called her orthopedic surgeon to see if she could advice our town's ER to take it off (we live an hour from where she gets casted and wanted to get it done in our town). The nurse finally called back 1/2 an hour later (it was 4:30 by then) and insisted she be brought in Wednesday to have the cast removed and a new one put on. I tried to explain that casting Lily was OUR choice, and she didn't need it on the full two weeks. I argued with her for 5 minutes and she finally said she would try to get ahold of her ortho surg. who was out of the office. We waited and waited, but she never called back. Of course, why would I expect anyone to call back?
Well, it kept bothering her, so at 7, I decided to just take her in to the ER and have it removed. The ER doc didn't want to remove it, but decided to "reinforce it" instead. He put a few pieces of stretchy cotton in between Lily's leg and cast, and did the same at her toes. Then he layered MORE fiberglass on the cast! He "forgot" to smooth it down, so the fiberglass dried sticking up. What was his solution? To put MEDICAL TAPE around the entire foot to fix it. We left hoping it would work.
Here is his handywork:
So, we decided to remove it ourselves. By 2 am, we were both tired and cranky. We had gotten it all off except from her ankle to toes. There was about 1 inch removed from there but couldn't get it all off. I decided to go back to the ER and make them removed. I told them they needed to remove the cast and we weren't leaving until they did. When I explained the cotton had come loose before we even left earlier, she said "well you should have just come back in and we would have taken it off." I don't believe they would have.
Anyway, we got home at 3:30 am from a LONG night. Cast was off. Now we wait until her orthotics come in.
April 27 ~ Mold taken and cast on!
Off to the Hanger Clinic to get Lily's mold taken for her orthotics. We learned a lot about her orthotist, Russ. He's been working with them for a long time.
Here is the mold of her foot up to almost her knee:
We were originally told it would take 1-2 weeks; however when we went to schedule pick-up, we were scheduled a month out! Now we have to wait until May 26th. Ugh.
After we left Hanger, we went to Dr. MacDougall's office (pediatric orthopedic surgeon) to have her foot put into a cast for two weeks. She didn't have to get it done, but the pos thought it would be beneficial psychologically to get her prepared, and also to see if her foot would stretch. When we told her it wouldn't be until May 26th, she suggested having Lily re-cast in 2 weeks. So we set her appointment for then.
She picked out an awesome blue color for the cast. The pediatric orthopedic surgeon kept layering the cast and was quite thick and heavy when she was done. Lol.
Here is the mold of her foot up to almost her knee:
Before we left, I asked if Lily could pick out colors for her DAFO, and Ross looked at her and said "I thought a nice young lady like yourself would just want white so it doesn't bring attention to you." To which Lily replied, "I have to wear it all the time, so I want to make it mine. Of course I want it colored!" Proud mommy moment!
Here is the pattern she picked out:
We were originally told it would take 1-2 weeks; however when we went to schedule pick-up, we were scheduled a month out! Now we have to wait until May 26th. Ugh.
After we left Hanger, we went to Dr. MacDougall's office (pediatric orthopedic surgeon) to have her foot put into a cast for two weeks. She didn't have to get it done, but the pos thought it would be beneficial psychologically to get her prepared, and also to see if her foot would stretch. When we told her it wouldn't be until May 26th, she suggested having Lily re-cast in 2 weeks. So we set her appointment for then.
She picked out an awesome blue color for the cast. The pediatric orthopedic surgeon kept layering the cast and was quite thick and heavy when she was done. Lol.
Tuesday, May 5, 2015
Pediatric Stroke Awareness Month, and Fundraiser!
May is Pediatric Stroke Awareness Month!
Though we do not know if a stroke caused Lily's hemiparesis, it is possible based on her signs and symptoms that is what happened.
I have found some awesome support online at CHASA and their Facebook page, CHASA. Through them, I have contacted Governor Scott Walker to declare May as Pediatric Stroke Awareness Month in WI.
A fundraiser page has also been set up to raise a bit of money to help other families purchase orthotics NEEDED for their children but insurance won't cover. Fortunately, our insurance covers them for LIly, but we'd like to help others out, even if it's just a little bit. Please consider donating! If you are unable to give monetarily, I would love it if you could share the links!
Lily's Muscle Journey Crowdrise
Though we do not know if a stroke caused Lily's hemiparesis, it is possible based on her signs and symptoms that is what happened.
I have found some awesome support online at CHASA and their Facebook page, CHASA. Through them, I have contacted Governor Scott Walker to declare May as Pediatric Stroke Awareness Month in WI.
A fundraiser page has also been set up to raise a bit of money to help other families purchase orthotics NEEDED for their children but insurance won't cover. Fortunately, our insurance covers them for LIly, but we'd like to help others out, even if it's just a little bit. Please consider donating! If you are unable to give monetarily, I would love it if you could share the links!
Lily's Muscle Journey Crowdrise
Physical Therapy
Before Lily got her cast on, we stopped and had an initial consultation with the physical therapist she will be seeing. There were a few things he did with her, and noted she has a lot of trigger points for her foot in her calf. He also noted that she has a Babinski reflex.
"The Babinski reflex is obtained by stimulating the outside of the sole of the foot, causing extension of the big toe while fanning the other toes. The examiner begins the stimulation at the heel and goes forward to the base of the toes. Most newborn babies and young infants are not neurologically mature, and they therefore show a Babinski reflex. A Babinski reflex in an older child or an adult is abnormal and is a sign of a problem in the brain or spinal cord. A Babinski reflex that is present on one side but not the other is also abnormal, and it can indicate which side of the brain is involved."
~http://www.medicinenet.com/script/main/art.asp?articlekey=7172
We set up a month's worth of PT twice a week, once her cast is off. Hopefully the PT will help immensely.
"The Babinski reflex is obtained by stimulating the outside of the sole of the foot, causing extension of the big toe while fanning the other toes. The examiner begins the stimulation at the heel and goes forward to the base of the toes. Most newborn babies and young infants are not neurologically mature, and they therefore show a Babinski reflex. A Babinski reflex in an older child or an adult is abnormal and is a sign of a problem in the brain or spinal cord. A Babinski reflex that is present on one side but not the other is also abnormal, and it can indicate which side of the brain is involved."
~http://www.medicinenet.com/script/main/art.asp?articlekey=7172
We set up a month's worth of PT twice a week, once her cast is off. Hopefully the PT will help immensely.
April 27 ~ Orthotics appointment and casting
We met with the orthotics department at Hanger Clinic in Green Bay today. Lily got her foot casted to be the mold for her SMO/AFO. She will be wearing the SMO during the day, and the AFO will click on to the back of her SMO for at night. Hopefully this will help with her ankle supinating, and will allow extra support and balance during the day, and stretching the muscles at night.
Once done there, we headed back over tho her ped. orthopedic surgeon to have her foot casted. She picked a nice blue color, and we have decorated the boot she wears over it.
Normally, it takes 1-2 weeks for the orthotics to come in; unfortunately, Hanger clinic felt they were going to be in late, and then Ross, her orthotist, will be out of the office May 18-25. So the soonest she could get in for them is May 26th. This means keeping the cast on that long. The orthopedic surgeon doesn't feel comfortable having her wear it that long, so we will be going on May 11 to have the cast removed. If she is doing well with it on, we can cancel that appointment and keep the cast on until the orthotics come in.
Once done there, we headed back over tho her ped. orthopedic surgeon to have her foot casted. She picked a nice blue color, and we have decorated the boot she wears over it.
Normally, it takes 1-2 weeks for the orthotics to come in; unfortunately, Hanger clinic felt they were going to be in late, and then Ross, her orthotist, will be out of the office May 18-25. So the soonest she could get in for them is May 26th. This means keeping the cast on that long. The orthopedic surgeon doesn't feel comfortable having her wear it that long, so we will be going on May 11 to have the cast removed. If she is doing well with it on, we can cancel that appointment and keep the cast on until the orthotics come in.
Tuesday, April 14, 2015
April 13 ~ Pediatric Orthopedic Surgeon Appointment
Lily had her appointment
with the pediatric orthopedic doctor/surgeon. She is also a specialist in
pediatric Spine/scoliosis issues.
I did find out that the nurses at the Pediatric Neurologist office didn’t know her MRI was only of the brain and CEREBRAL spine. It did not go all the way to the base of her spine. I talked to two separate people at that office before her scan was done and they assured me it was the full spine, as we had recalled an injury she had on her lower spine in 2007. I was told if there were issues from that injury it would show up on the MRI. The orthopedic doctor read through the results of the MRI and said they looked over every little area of her brain and cerebral spine. Lily had the best person to read it: a neurologic radiologist. He found nothing that would suspect cancer, a tumor, or a mass.
She did a lot of testing on her muscles again. When Lily was asked to do a wall push-up with her left arm, she was able to do it with no problems. When she was asked to use her right arm, she couldn't push with any weight on it. So she definitely has a lot of muscle loss on her whole right side. She also checked her spine for curvature. She did not see any curvature, but ordered a standing x-ray of her spine. The radiology specialist and her orthopedic surgeon looked at the x-ray and showed us her pictures. There is no evidence of curvature, the injury to her back, or any tethering of her spinal cord. She did note her growth plates were finished, so she said to Lily "I hope you're happy with your height, because you're about as tall as you're going to get!" Lily looked at her and said she didn't like how short she was and laughed. She's about 5'5", so she's not too short.
The ortho doc said
if we can’t get things figured out, we may need to be referred to the Mayo
Clinic. She doesn’t think it will come to that, as we’ve ruled out anything
serious that would be causing Lily’s hemiparesis. We may be scheduling an EEG
and/or EMG soon. She noted Lily had hyper reflexes, but she doesn’t have other
symptoms of hyperreflexia or hyperreflexivity. The ortho doc said her symptoms
are somewhat like Ataxia, which is lack of muscle coordination in movement,
speech, eye movement, and swallowing. The only symptom of Ataxia she has is the
lack of muscle coordination in movement. The other 3 (speech, eye movement, and
swallowing) don’t pertain to her.
So this is where we
are. Lily has to be fitted for an AFO (ankle foot orthosis) and a DAFO (dynamic
ankle foot orthosis). One is for her to wear during the day, the other is for
her to wear at night. They will cast her leg and take a mold from that to make
the AFO/DAFO’s. After they take that mold, we have to go back to the Orthopedic
doctor and have her foot/leg put in to a cast for about 2 weeks until her
AFO/DAFO’s are done. 4 weeks later we get to go back to see the pediatric
orthopedic surgeon to see if the AFO/DAFO’s are helping.
Our heads are still
spinning from all of this information. I'm hoping we are getting
somewhere now.
April 11 ~ A bit of positivity!!
Lily was asked back in November by her choir teacher if she could try out for the Wisconsin State Music Association Middle School Honors Choir. Well, she just had her audition and sounded beautiful! We couldn't be more proud of you! She had to do some sight reading, and hadn't learned how. She did awesome with that as well! Now we have to wait until June to find out if she made it.
If she didn't make it, she still did something only her and one other student from the Shawano School District did this school year: TRIED OUT! Just trying out is a big honor! She was selected because she is a leader in her choir classes, and she is talented. If she did make it, she will get music to practice, and then the weekend of October 30 and 31 she will travel to Waunakee along with everyone else who made it. They will practice and then perform at the Marriot Madison-West for the public, and will also appear recorded and played on TV (I don't remember the station though) :)
If she didn't make it, she still did something only her and one other student from the Shawano School District did this school year: TRIED OUT! Just trying out is a big honor! She was selected because she is a leader in her choir classes, and she is talented. If she did make it, she will get music to practice, and then the weekend of October 30 and 31 she will travel to Waunakee along with everyone else who made it. They will practice and then perform at the Marriot Madison-West for the public, and will also appear recorded and played on TV (I don't remember the station though) :)
April 10 ~ 2nd Chiropractor Appointment
Lily had several back cracks on Wednesday, and by Thursday, her back was extremely sore. But the trooper she is wanted to go to school. So off she went.
Today we had a second appointment. The chiro adjusted her back "more gently" and also did a deep heat treatment on her foot instead of the ultrasound. Neither one has helped her. She has another appointment scheduled for April 14, but depending on what we find out at the orthopedic surgeon appointment, we may cancel and forgo any chirporactor appointments.
Today we had a second appointment. The chiro adjusted her back "more gently" and also did a deep heat treatment on her foot instead of the ultrasound. Neither one has helped her. She has another appointment scheduled for April 14, but depending on what we find out at the orthopedic surgeon appointment, we may cancel and forgo any chirporactor appointments.
April 8 ~ First Chiropractor Appointment
Lily saw a chiropractor last night for her hemiparesis, and needs to go back Friday. She had ultrasound therapy on her foot as well. Not sure if it has helped, but it has only been once. The chiro said her hemiparesis could have come from a pinched nerve, or even a viral infection like encephalitis. Monday,
Lily has to see the pediatric orthopedic doctor/surgeon in Green Bay. Maybe she will have more answers? It's really frustrating to have to take so many days off running around. But I will do anything to get Lily better!!
Lily has to see the pediatric orthopedic doctor/surgeon in Green Bay. Maybe she will have more answers? It's really frustrating to have to take so many days off running around. But I will do anything to get Lily better!!
April 7 ~ FRUSTRATED!!
As I am trying to get a referral for Lily for orthopedic physical therapy in Shawano, I am informed by the nurse of her pediatric neurologist that he wants her to see a pediatric orthopedic SPECIALIST and not THERAPIST. Good thing the nurse got that right when she called me last Friday! <insert sarcasm> Big difference there!
So now we have to make another trip on Monday April 13th to Green Bay to see the pediatric orthopedic specialist. Maybe she can give us some more answers. It would be nice to have more answers. After we see her, she may refer us to therapy or go a different route. We'll get Lily figured out sooner or later! Lol
April 2 ~ MRI results!
WONDERFUL NEWS TODAY! But we are still left wondering....Well, the great news is that Lily's contrasting MRI of her brain and spine was "unremarkable" and showed no reason for her hemiparesis. The not so good news is that her cause is unknown and we may never know.
Tomorrow she will try a chiropractor to see if she can help. Lily has been referred to an orthopedic therapist in Green Bay, but I am going to see if we can get her somewhere in Shawano. SO hopefully between those two, Lily will avoid having surgery on her foot. But that may be needed in the future, especially on the bunion that has formed.
Crossing our fingers and praying that we have no further issues!
April 1 ~ MRI time!
Lily's contrasting brain to spinal base MRI is today, to see if that will give us some answers. I was told it would take 1.5-2 hours. She was in there for over 2 hours.
I didn't realize they were going to inject her with dye, otherwise I would have warned her. It took 3 people to try to find a vein, and then they finally called in a specialist. 4 pokes with the needle later, it was finally injected. She was told her veins were "playing peek-a-boo" and that they were very "weak". They took a lot of images, and she was even strapped to the board at her forehead for a few images.
I hope we get results before Easter. They said 2-3 business days for results, so we probably won't get them until Monday.
I didn't realize they were going to inject her with dye, otherwise I would have warned her. It took 3 people to try to find a vein, and then they finally called in a specialist. 4 pokes with the needle later, it was finally injected. She was told her veins were "playing peek-a-boo" and that they were very "weak". They took a lot of images, and she was even strapped to the board at her forehead for a few images.
I hope we get results before Easter. They said 2-3 business days for results, so we probably won't get them until Monday.
March 25 ~ Pediatric Neurologist Apppointment
Lily's pediatric neurologist appointment brought many more questions and few answers. He said it's not muscular dystrophy or any form of it. (At least that's ruled out though). She needs to have a brain MRI done next week (April 1). He thinks her issues stem from an old injury to her spine, spinal cord, or brain. It could have already happened while I was pregnant with her. He wants her to do pain management and rehab in Milwaukee.
On our drive home we tried to think of any injuries she may have had growing up. In 2007, Lily fell off the back of a kitchen stool and hit her back on a shelf. She knocked several vertebrae on the way down and couldn't bend over. So I took her to the ER. They didn't do an x-ray. They made her bend over and said she was fine; bandaged it up and sent us home. She still has a scar from it. Timothy and I had her bend over to check it out. Right where the scar is, there seems to be a bump or thickness there. So now we're wondering if that is the cause of all of this. Fortunately the MRI next week will go from her brain all down her spine. So if that's the cause, they will find it.
We are holding off on any pain management, rehab, or physical therapy in Milwaukee yet. Driving that much is just not an option for us. We may try a chiropractor first to see if that will help. All of that will wait until after the MRI results.
Lily was very teary eyed when the doc mentioned it was her brain or spine. She is scared that they will find something bad in her brain. So I am going to get her in to see a psychiatrist and our pastor to talk with. I told her she needed to talk with someone and not keep her feelings to herself. We are watching her very closely to monitor for depression. She's been pretty happy through it so far, but it's starting to take its toll on her now. She just wants it over. (Plus her best friend for the past 6 years or so will be moving soon, so that doesn't help matters either.)
When we find anything more out, I will be sure to let you know. We have a challenging road ahead of us. The waiting is frustrating, and not knowing is worse. We are praying that the MRI shows that Lily's problems are easily fixed, and cause no lasting effects.
Thursday, March 12, 2015
Finally an appointment date! Mar 11
I called the PN office early this morning, as I was told he would be in today. I told her Lily had x-rays done and they showed abnormalities. She could contact our clinic for them. I told her the podiatrist mentioned she could have some form of muscular dystrophy, pinched nerves, or a mass. I told her I suspected CMT (Charcot-Marie-Tooth disease, a form of MD) She asked if there was any history of muscular dystrophy in our family and I told her not that I was aware of.
The referral specialist said he wouldn't be in until after noon, but she would get Lily's file together, get it to the PN, and get back to me either today or tomorrow.
Well, the x-rays must have put things into fast-forward. The referral specialist at the PN office called shortly before 3. The PN said he would take her, and scheduled her for March 25 at 9:45. There is an MD clinic that day at the clinic as well, and he wants her participating in that. There was no indication of what Lily might have, but given that the PN wants her to participate in an MD clinic, we can only assume that he believes it is some form of MD.
The referral specialist said he wouldn't be in until after noon, but she would get Lily's file together, get it to the PN, and get back to me either today or tomorrow.
Well, the x-rays must have put things into fast-forward. The referral specialist at the PN office called shortly before 3. The PN said he would take her, and scheduled her for March 25 at 9:45. There is an MD clinic that day at the clinic as well, and he wants her participating in that. There was no indication of what Lily might have, but given that the PN wants her to participate in an MD clinic, we can only assume that he believes it is some form of MD.
Pain meds Mar 10
Lily's foot was giving her lots of pain, so I scheduled an appointment for her that afternoon. The only one who was available was a nurse practitioner (NP), not an actual doctor. I wanted them to take x-rays of her foot as none had been done yet, and also to give her something for the pain.
When the NP came in, her first comment was (quite accusingly) "You want narcotics for your daughter?" Like I was trying to drug her up!! I told her what was going on, and she didn't even look at her foot! She got up and said she wanted to read what the podiatrist said. 10 minutes later, she finally came back in. Their office was closed, so she couldn't get any records. I asked if we could at least do an x-ray, and she was on board with that, though she was still doubting what was going on.
Shortly after x-rays were taken, the NP came in and seemed much more sincere. Her first words were "Wow, I guess she does have some abnormalities in her foot." DUH!!!! Then she very nicely asked what I was thinking for pain reliever. I asked if we could start with something that wasn't a narcotic, and she agreed. So naproxen it is. As we were walking out of the appointment, she said good luck and told us "You know, sometimes the squeaky wheel gets the oil.". I think she felt bad for doubting us.
Here are her x-rays vs. "normal" x-rays.
When the NP came in, her first comment was (quite accusingly) "You want narcotics for your daughter?" Like I was trying to drug her up!! I told her what was going on, and she didn't even look at her foot! She got up and said she wanted to read what the podiatrist said. 10 minutes later, she finally came back in. Their office was closed, so she couldn't get any records. I asked if we could at least do an x-ray, and she was on board with that, though she was still doubting what was going on.
Shortly after x-rays were taken, the NP came in and seemed much more sincere. Her first words were "Wow, I guess she does have some abnormalities in her foot." DUH!!!! Then she very nicely asked what I was thinking for pain reliever. I asked if we could start with something that wasn't a narcotic, and she agreed. So naproxen it is. As we were walking out of the appointment, she said good luck and told us "You know, sometimes the squeaky wheel gets the oil.". I think she felt bad for doubting us.
Here are her x-rays vs. "normal" x-rays.
Waiting!! Mar 6
This waiting has been awful! So I called the Pediatric Neurologist office to find out if he had a chance to look at Lily's file. I was told he was out of the office until the following Wednesday! How frustrating! They did not tell the podiatrist's office that when they tried to get a referral.
Lily's foot had been causing her a lot of pain, so we thought about getting her in to either Milwaukee or Madison, to see if she could get in sooner. Madison didn't have any openings until June! Milwaukee said they could get her in within a week if they felt her case was emergent, which meant limb or life threatening. Lily was neither. If we wanted to schedule her in, it would be a few months before she could get in.
I called the podiatrist to ask about some pain reliever for Lily. She was willing to give her some, but with the new drug requirements, we would have to drive an hour to pick up the written prescription to physically give it to the pharmacist. Sorry, we can't do that. She suggested we see her physician here in town.
With it being Friday, her pain has been less on the weekends, so we thought we would wait and see what the weekend brought.
Lily's foot had been causing her a lot of pain, so we thought about getting her in to either Milwaukee or Madison, to see if she could get in sooner. Madison didn't have any openings until June! Milwaukee said they could get her in within a week if they felt her case was emergent, which meant limb or life threatening. Lily was neither. If we wanted to schedule her in, it would be a few months before she could get in.
I called the podiatrist to ask about some pain reliever for Lily. She was willing to give her some, but with the new drug requirements, we would have to drive an hour to pick up the written prescription to physically give it to the pharmacist. Sorry, we can't do that. She suggested we see her physician here in town.
With it being Friday, her pain has been less on the weekends, so we thought we would wait and see what the weekend brought.
Podiatrist - March 3, 2015
Because Shawano is small, there are virtually no specialists around, so you have to drive. The podiatrist was in Wausau, which is an hour's drive from us. And of course, it was snowing; a lot. The drive there was not nice at all.
The podiatrist looked at Lily's foot. She noted that her right foot had extreme "pes cavus" (high arch) and her left food was flat-footed. Dr. pushed on it, pulled on it, and determined that it was neurological, and her muscles were weak. She did not take any x-rays either.
We were told she could have some form of muscular dystrophy, or she could have a pinched muscle or nerve, or there could be a mass somewhere. But she couldn't help. Orthotics, at least at this point, would hurt more than help. She also said an orthopedic surgeon would probably be required for some form of surgery. We were referred to a pediatric neurologist (PN) for further diagnostics.
These specialists are even farther from us. Madison and Milwaukee (2.5-3 hours) are the closest, although I did find one in Green Bay, which is only about 40 minutes from us. Unfortunately, the referral receptionist was out of the office for lunch.
When she got ahold of us, she explained that the PN in Green Bay would need to review her file first, and then determine if he felt he could help her. After that, an appointment could be set up, which would be a wait of about 2-3 weeks. They would call when the PN had looked it over.
The podiatrist looked at Lily's foot. She noted that her right foot had extreme "pes cavus" (high arch) and her left food was flat-footed. Dr. pushed on it, pulled on it, and determined that it was neurological, and her muscles were weak. She did not take any x-rays either.
We were told she could have some form of muscular dystrophy, or she could have a pinched muscle or nerve, or there could be a mass somewhere. But she couldn't help. Orthotics, at least at this point, would hurt more than help. She also said an orthopedic surgeon would probably be required for some form of surgery. We were referred to a pediatric neurologist (PN) for further diagnostics.
These specialists are even farther from us. Madison and Milwaukee (2.5-3 hours) are the closest, although I did find one in Green Bay, which is only about 40 minutes from us. Unfortunately, the referral receptionist was out of the office for lunch.
When she got ahold of us, she explained that the PN in Green Bay would need to review her file first, and then determine if he felt he could help her. After that, an appointment could be set up, which would be a wait of about 2-3 weeks. They would call when the PN had looked it over.
Wednesday, March 11, 2015
First appointment Feb 26
Lily's pain kept progressing. So on Feb. 26, I called the clinic to make an appointment for her. The only doctor available was the pediatrician who comes to Shawano once a week.
We spent a whole 5 minutes in the office with him. He looked at her and didn't know what to do, so he referred her to a podiatrist. No x-rays to see if there was anything broken. The nurse called 3 different podiatrists, but none of them accepted our insurance. We were sent home and I was told I had to find one on my own who would accept our insurance.
On our way home, we stopped at a shoe store and they measured her feet. Her left one measured a size 9. Her right one measured a size 6.5!! They fitted her with some good ASICS, and showed her how she can adjust the strings to get a more loose fit for her right foot.
I was able to get Lily in with a podiatrist I was familiar with the following Tuesday. No long waiting time. Yay!
We spent a whole 5 minutes in the office with him. He looked at her and didn't know what to do, so he referred her to a podiatrist. No x-rays to see if there was anything broken. The nurse called 3 different podiatrists, but none of them accepted our insurance. We were sent home and I was told I had to find one on my own who would accept our insurance.
On our way home, we stopped at a shoe store and they measured her feet. Her left one measured a size 9. Her right one measured a size 6.5!! They fitted her with some good ASICS, and showed her how she can adjust the strings to get a more loose fit for her right foot.
I was able to get Lily in with a podiatrist I was familiar with the following Tuesday. No long waiting time. Yay!
When it all started Feb 19
October 2013, we noticed Lily's feet were two different sizes. The left foot was longer than the right foot. But that happens a lot, right? No big deal. I have 2 different sized feet as well, although not as noticable as hers.
Fast forward to November 2014. We started noticing Lily's right foot was starting to arch high. But there was nothing else wrong and Lily didn't complain of anything hurting. She was walking normal as well.
In late February, 2015, Lily started complaining that her right foot was hurting her. After further inspection, we noted that her arch was extremely high, her toes were turning out, and her ankle was supinating. Gave her some ibuprofen and she was good.
Fast forward to November 2014. We started noticing Lily's right foot was starting to arch high. But there was nothing else wrong and Lily didn't complain of anything hurting. She was walking normal as well.
In late February, 2015, Lily started complaining that her right foot was hurting her. After further inspection, we noted that her arch was extremely high, her toes were turning out, and her ankle was supinating. Gave her some ibuprofen and she was good.
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