A few weeks ago we found out Dr. Segal, the girl's orthopedic surgeon, is leaving to practice in another state. I was really, really bummed, as he's seen Madi since birth, but I scheduled a last appointment with him to try and get our ducks in a row. We were supposed to get in with him next week, and then he was going to move in four months. It was important that I talked to him because he wants to do a heel cord release on Madi during her back detethering surgery, so we were needing to discuss that, but also trying to appeal insurance to try and get Madi's Rifton Mobile Stander covered, so he was going to do a peer-to-peer for me and try to get it covered. Today I call to ask his nurse a question, only to find out he's gone. Just... gone. He left four months early. I am SO bummed. Dr. Segal had a passion for kiddos with spina bifida. He came to all the local spina bifida association events, speaks at the yearly spina bifida conference, and was always involved. Instead of looking at my girl's diagnosis and level, he'd look at them for who they are. This is something that so many doctors do not do, but it is so very important. He was pro-walking, and was always supportive when we needed new leg braces or new equipment. I am just heartbroken to have to see someone new, especially because I now have no idea who to choose for Madi's heel cord release surgery, and this person will be totally new to us. Sigh. Please be praying as we work through trying to find a new orthopedic surgeon, especially one that is pro-walking and will advocate for the girls. I am hopeful that I have found one we will like, so I am going to try to get in to them ASAP. I know God's got this, and He has someone amazing in mind for us, so please pray we find this person quickly (hopefully the person I have picked out will be wonderful!!), so we can have peace of mind about her upcoming surgery. Thank you!
Showing posts with label Dr. Lee Segal. Show all posts
Showing posts with label Dr. Lee Segal. Show all posts
Wednesday, March 19, 2014
Monday, January 27, 2014
Fitted for Her New Back Brace
On Friday, Madi was fitted for her new back brace. The plan is for her to wear this all day, but not at night or when she is standing in her HKFOs. It will be made out of the same plastic material as her HKFOs and is being custom made/fit to her by Ron (our go-to-guy) at Hanger Orthotics.
Madi was very excited to get fitted for her new brace. I know she does not really understand what she is facing, but her enthusiasm and amazing attitude does wonders for this momma's heart!
When she got her last HKFOs made, she was really bummed that there were not decals for eggs, caterpillars, chrysalises, and butterflies. She wanted the whole life cycle of a butterfly on her HKFOs. Ron remembered that and brought in a sample of a new decal they have that is all different types of insects. Oh boy, that made her day!! She tried to keep the sample, and then kept kissing it. She is such a ham! Ron promised he would keep the sections he cut out of her new back brace so that she could keep them. She was pretty happy about that, and decided that it was ok to give the sample back to Ron.
Ron made her a "special" tank top to wear under the casting material, like he always does when he has to cast her body to make a mold. He uses a light meshed material and cuts it to go over her body like a shirt. She always thinks these are treasures, and refuses to take them off. Oh yes, she did wear that tank top (which she called a bathing suit) all day, even out to the grocery store ;). She was so proud of her new "shirt".
We head back in a few weeks to pick up her new brace. It can go under or over her clothes, but she will need a t-shirt under it so that it does not bother her. I'm now on the hunt for light-weight tank tops, because it gets so darn hot here. Adding a shirt and brace is going to get hot for her.
Friday we go in to the neurosurgeon to discuss everything we discussed with Dr. Segal, our orthopedic surgeon. I am praying for wisdom and direction for both David and I, as well as her team of doctors. Her doctors are conservative with surgery, and really consider all the angles, so I am very thankful for that.
Thank you for all of your prayers for our sweet girl. We have really seen God's hand throughout our newest journey. We were actually supposed to see Dr. Moss, her neurosurgeon, a few weeks ago, but they rescheduled the appointment. The timing was perfect. If we had seen Dr. Moss before seeing Dr. Segal, it probably would have taken us months to get back in with Dr. Moss to discuss the x-ray and newest findings. Also, Tami, Madi's physical therapist, was able to go with us to our "big news" appointment with Dr. Segal. It just so turned out that our appointment time was at the exact time Madi normally has therapy, so Tami offered to come with us. We also usually wait at least 1-2 hours to see Dr. Segal, but this time, we were seen in about 30 minutes, which is a huge miracle in itself. Because of that, Tami was there with us for the entire appointment. It is awesome to have that second set of eyes and second opinion from someone who has seen Madi on a weekly basis since she was a baby. I am so thankful for these little God moments, and how He is orchestrating everything and putting each little piece in its place.
Madi was very excited to get fitted for her new brace. I know she does not really understand what she is facing, but her enthusiasm and amazing attitude does wonders for this momma's heart!
When she got her last HKFOs made, she was really bummed that there were not decals for eggs, caterpillars, chrysalises, and butterflies. She wanted the whole life cycle of a butterfly on her HKFOs. Ron remembered that and brought in a sample of a new decal they have that is all different types of insects. Oh boy, that made her day!! She tried to keep the sample, and then kept kissing it. She is such a ham! Ron promised he would keep the sections he cut out of her new back brace so that she could keep them. She was pretty happy about that, and decided that it was ok to give the sample back to Ron.
Ron made her a "special" tank top to wear under the casting material, like he always does when he has to cast her body to make a mold. He uses a light meshed material and cuts it to go over her body like a shirt. She always thinks these are treasures, and refuses to take them off. Oh yes, she did wear that tank top (which she called a bathing suit) all day, even out to the grocery store ;). She was so proud of her new "shirt".
We head back in a few weeks to pick up her new brace. It can go under or over her clothes, but she will need a t-shirt under it so that it does not bother her. I'm now on the hunt for light-weight tank tops, because it gets so darn hot here. Adding a shirt and brace is going to get hot for her.
Friday we go in to the neurosurgeon to discuss everything we discussed with Dr. Segal, our orthopedic surgeon. I am praying for wisdom and direction for both David and I, as well as her team of doctors. Her doctors are conservative with surgery, and really consider all the angles, so I am very thankful for that.
Thank you for all of your prayers for our sweet girl. We have really seen God's hand throughout our newest journey. We were actually supposed to see Dr. Moss, her neurosurgeon, a few weeks ago, but they rescheduled the appointment. The timing was perfect. If we had seen Dr. Moss before seeing Dr. Segal, it probably would have taken us months to get back in with Dr. Moss to discuss the x-ray and newest findings. Also, Tami, Madi's physical therapist, was able to go with us to our "big news" appointment with Dr. Segal. It just so turned out that our appointment time was at the exact time Madi normally has therapy, so Tami offered to come with us. We also usually wait at least 1-2 hours to see Dr. Segal, but this time, we were seen in about 30 minutes, which is a huge miracle in itself. Because of that, Tami was there with us for the entire appointment. It is awesome to have that second set of eyes and second opinion from someone who has seen Madi on a weekly basis since she was a baby. I am so thankful for these little God moments, and how He is orchestrating everything and putting each little piece in its place.
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