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!!
Monday, May 25, 2015
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.
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