Last week, Meghan had her annual appointment with her Orthopedic specialist. We also met with an Orthopedic surgeon at this appointment. Meghan had x-rays taken of her hips, legs and feet. This is so they can get accurate measurements of her length differences (her right leg is longer than her left). Last year, Meghan's leg length difference was 1/2 of a centimeter. This year, she has an LLD of 2.3-2.4 centimeter difference. But, with the measurements of her hip, femur and tibia, she has a combined difference of 1 inch. The increase from last year to this year is much higher than they anticipated it would be. The specialist and surgeon discussed with us that it is likely that she will need surgery in the future on her right leg to stop the bone growth so that her left leg can catch up. We were told surgery isn't even considered until the LLD difference is 2+ centimeters. Meghan is slightly over that, but we are going to give it another year and see where her length difference is at that point. She did get a new shoe lift and it is taking Meghan a little bit to get used to the new lift. Her old lift was 1/4 centimeter and her new one is a 1.5 centimeter lift. Her lift is now too big to fit in her shoe, so we have to send in her shoes and they will cut open the sole and put the lift in the sole of her shoe. Because of her length difference, she is closely monitored for scoliosis. They checked her spine and it is straight so that is awesome!
Earlier this week, we had a consult with Neurology about the febrile seizure Meghan had a month ago. Basically, Meghan gets a freebie pass this time, but IF she would ever have another seizure, we would need to call them and let them know and they would decide if she would need to have an EEG done. If she would have another febrile seizure, I do not think we would put her though an EEG though, as the chance of happening to catch her having that kind of seizure is very slim, since they are brought on by a sudden increase in body temp. We also discussed Meghan having episodes of vomiting during the night. This only happens while we are away from home, but it doesn't happen everytime we are away from home. She said it could be shunt related (change in pressure, position can cause vomiting), or it could be her body's way of telling us she has anxiety about being in a new environment. Either way, we will be talking to her Neurosurgeon about this at our next appointment. We do not need to go back and see Neurology unless more seizures happen down the road, so that is good that we do not need to add another specialist to the list!
After almost 1.5 months, we finally heard back from Meghan's Endocrinologist regarding growth hormone therapy. She spoke with Meghan's Geneticist and they both agreed it would be good to start Meghan on Growth Hormone with close monitoring. There are some risks to being on GH and the Endo wanted to make sure we aren't putting Meghan in a bad position by having her on growth hormone due to some of the risks. The hospital submitted the pre-authorization to the insurance company today. This process can take up to a couple weeks. Once the pre-auth is complete, the prescription will be sent to the pharmacy. The pharmacy will then mail us pre filled/disposable injections. Once the pharmacy has been given the prescription, a nurse will come to our house to teach Jeff and I how to do injections.
The next big appointment will be on November 10. She will have a sedated MRI of her brain and spine. She will also have skin biopies done after the MRI. After the skin biopsy, we meet with neuro for the MRI results. She is also due for an ultra sound, but I am not sure we can fit this into her already busy day. This will be a lot for her to go through in one day already.
Some very exciting times are coming up in less than a month! Meghan will meet Jenn, Meghan's runner. Meghan and Jenn were matched a year ago and the relationship between the two of them is pretty awesome! I am honored to call Jenn my friend, as well! They celebrated their 1 year matchiversary on September 29th. Jenn and her husband will be flying in from Maryland on November 5 and will be staying with us until they have to fly back home on November 9. We are very much looking forward to meeting them and being able to spend time with them!
