Over the last month, Izzy has continued the gluten free diet.
She is not as keen about it any longer. She gets downright angry
when she can't have bread (and she doesn't like gluten free bread).
But she doesn't want to stop it either. She says its helping. So,
we are listening. Dale and I don't think she is complaining as much
of stomach pain either. And she hasn't vomited in a while. Those
are all very good things. She's still not eating as well as she was
last year at this time, but I guess we can't have everything.
Izzy had her first respiratory infection of the season and didn't even have to miss school. That is a first! She also had an ear infection. Her first one in months. Considering she had an ear infection almost non-stop the entire year before she started the Hizentra, we have made huge progress there. She sees both the immunologist and ENT again in November, along with the GI doc and eye doc (to check her new glasses).
And of course, because she is Izzy, we had new problems crop up. Izzy has started having the dreaded leg pains that are commonly associated with DiGeorge's Syndrome. She gets them at night mostly, but she has been having complaints during some days as well. And her feet hurt frequently as well. Tuesday, she had occupational therapy during the day and that night she screamed out in pain once an hour, every hour. She was killing Dale and I because it was obviously pain, but she wasn't waking up enough to let us know what was hurting, so we couldn't medicate her (and trying to wake her up just ended very badly with a lot of screaming and NO answers). It wasn't until Wednesday morning, after Izzy really woke up, that she could tell us her problem.
I researched the leg pains because I knew it was fairly common with the 22q11.2 deletion (DiGeorge). I found one study out of England that linked the leg pains to abnormalities in the feet for over 90% of the 22q patients. Once proper orthodics were used, the pains were alleviated. So, the plan was to discuss it with Izzy's orthopedic surgeon at her next annual check up for hemihypertrophy and scoliosis. Izzy begged me to set the appointment in hopes that he could lessen her pain. Unfortunately, he didn't have any openings until December.
Luckily for us, Izzy had her third IEP in 6 months this morning! Izzy's new physical therapist in our new school district mentioned to us that Izzy needs either foot or ankle braces again. She explained that Izzy's feet are pronated and she is walking on the inner border of her feet, which will cause pain. Ding! Ding! Ding! Last summer, Izzy's orthopedic surgeon had Izzy stop wearing her braces. He said they weren't necessary any longer. Apparently, they were! So, hopefully, Izzy will get new braces (and new shoes to fit the braces) and the pains will lessen. When I told Izzy her physical therapist came up with an idea to help her with the pain, she lit up so much.
Izzy really loves her new school. She loves her therapists. And we love them all as well. I was dreading this morning's IEP--dealing with an entirely new set of people who didn't have the experience with Izzy that we were used to. But I was beyond pleasantly surprised. In the last month, they noticed things about Izzy that I had to fight to explain to her therapists last year. The problems I see at home, they have witnessed and already have plans to work with us. They are implementing a system to help Izzy understand when she is working herself too hard (because she doesn't like to stop until she's worked too hard and can't breathe).
Even more shocking, we planned the beginning of kindergarten for Izzy since this IEP will be place at the start of next year. I wasn't specifically prepared to discuss kindergarten today, but I have been planning my requests for years. I had many things I was ready to fight for. But I didn't have to. They put everything I wanted into the IEP without any issue or question. I am overjoyed at how well the IEP went today. If this is any indication of the level of commitment and care we are going to get from the new school district, Izzy will excel here without question.
Life is very good for the Stothers family. We hope all of you are doing well too!
Mel
Izzy had her first respiratory infection of the season and didn't even have to miss school. That is a first! She also had an ear infection. Her first one in months. Considering she had an ear infection almost non-stop the entire year before she started the Hizentra, we have made huge progress there. She sees both the immunologist and ENT again in November, along with the GI doc and eye doc (to check her new glasses).
And of course, because she is Izzy, we had new problems crop up. Izzy has started having the dreaded leg pains that are commonly associated with DiGeorge's Syndrome. She gets them at night mostly, but she has been having complaints during some days as well. And her feet hurt frequently as well. Tuesday, she had occupational therapy during the day and that night she screamed out in pain once an hour, every hour. She was killing Dale and I because it was obviously pain, but she wasn't waking up enough to let us know what was hurting, so we couldn't medicate her (and trying to wake her up just ended very badly with a lot of screaming and NO answers). It wasn't until Wednesday morning, after Izzy really woke up, that she could tell us her problem.
I researched the leg pains because I knew it was fairly common with the 22q11.2 deletion (DiGeorge). I found one study out of England that linked the leg pains to abnormalities in the feet for over 90% of the 22q patients. Once proper orthodics were used, the pains were alleviated. So, the plan was to discuss it with Izzy's orthopedic surgeon at her next annual check up for hemihypertrophy and scoliosis. Izzy begged me to set the appointment in hopes that he could lessen her pain. Unfortunately, he didn't have any openings until December.
Luckily for us, Izzy had her third IEP in 6 months this morning! Izzy's new physical therapist in our new school district mentioned to us that Izzy needs either foot or ankle braces again. She explained that Izzy's feet are pronated and she is walking on the inner border of her feet, which will cause pain. Ding! Ding! Ding! Last summer, Izzy's orthopedic surgeon had Izzy stop wearing her braces. He said they weren't necessary any longer. Apparently, they were! So, hopefully, Izzy will get new braces (and new shoes to fit the braces) and the pains will lessen. When I told Izzy her physical therapist came up with an idea to help her with the pain, she lit up so much.
Izzy really loves her new school. She loves her therapists. And we love them all as well. I was dreading this morning's IEP--dealing with an entirely new set of people who didn't have the experience with Izzy that we were used to. But I was beyond pleasantly surprised. In the last month, they noticed things about Izzy that I had to fight to explain to her therapists last year. The problems I see at home, they have witnessed and already have plans to work with us. They are implementing a system to help Izzy understand when she is working herself too hard (because she doesn't like to stop until she's worked too hard and can't breathe).
Even more shocking, we planned the beginning of kindergarten for Izzy since this IEP will be place at the start of next year. I wasn't specifically prepared to discuss kindergarten today, but I have been planning my requests for years. I had many things I was ready to fight for. But I didn't have to. They put everything I wanted into the IEP without any issue or question. I am overjoyed at how well the IEP went today. If this is any indication of the level of commitment and care we are going to get from the new school district, Izzy will excel here without question.
Life is very good for the Stothers family. We hope all of you are doing well too!
Mel
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