Today marks the 4 week anniversary of starting Growth Hormone Therapy for Pidge. The past few days, I’ve had to squeeze him into his sleep and plays and other clothes. We cloth diaper so things are always a bit snug, but there was no snapping them the last two days. I dug our 9-12 month clothes out of storage this morning and will change sizes in his dresser. He outgrew his 6-9 month clothes in 2 weeks! This morning I attempted to get a decent measurement on him and managed to get a fairly accurate estimate of 28″. It is no wonder his clothes don’t fit any more. He has grown over 2 inches in the past 4 weeks!! He is still in the “catch up” phase of starting growth hormone therapy. For the first year or so, children who start therapy, catch up to their genetic potential and their growth then slows to that of a typical child. They can grow extremely fast at first but it does not mean they will then exceed the height that they were meant to be as adults. Given that Pidge was 21 1/4″ at birth and almost 10 lbs, we knew he was supposed to be a big boy. We are guessing that as we caught the growth hormone deficiency early, his growth will be rapid over the next 6 months and then slow to his normal growth rate.
We are seeing a lot of improvement in development too. After stopping all babbling, he is now back to it and “talking” up a storm. He is also making great progress in catching up on his gross motor skills. He is now able to get into a sitting position unassisted and sit up. He also started crawling a week and a half ago. Now, he is on the floor and on the move.
We knew he was supposed to be a big boy, but oh my!
We heard from our endocrinologist’s office earlier this week and were notified that they had sent in all of our paperwork to our insurance and the pharmaceutical company who manufactures the growth hormone we use. Growth Hormone Therapy for us comes in a dial-a-dose pen similar to an insulin pen. We simply dial the correct dose and give the shot each night. We then received a phone call our case manager from the pharmaceutical company. Pidge was in the system and our endocrinologist had requested a jump start kit so we could go ahead and get started while we wait for the insurance approval. When the little ones fail to grow, it affects many aspects of development and early diagnosis and intervention can help prevent a lot of issues down the road. We had already been through this with our oldest son, and although he is fine now, we wanted to prevent Pidge from having to go through the same thing if at all possible. We are still waiting to find out if he will need to have the MRI, but for now we can go ahead and start Growth Hormone Therapy. Continue reading
Pidge underwent testing this week to confirm growth hormone deficiency. The test involves administering a medication to stimulate the pituitary into producing growth hormone, attempting to replicate the pattern of production while he is asleep. The testing takes place over the course of 2 1/2 hours, with multiple blood draws at timed intervals. The most difficult part of the test was that Pidge had to fast for 10 hours all together. This makes for one very tired, crabby, hungry infant! We were concerned that as it was difficult to find a good vein for blood work that the nurse would not be able to find a good vein for the I.V. Thankfully she found a good vein that held for the entire test and she was able to get it on the first try.
We got the results back today and they confirmed that he is Growth Hormone Deficient, by a substantial amount. Continue reading
I find it amazing that we, on occasions, receive so much resistance for living a life outside what the social norm in our part of suburbia. The meaning of Extraordinary, I feel, is an apt adjective descriptor of our family. While we live a life outside of the usual, it is in fact extra ordinary. We simply follow an older style of living. Our decisions have been based on what worked well for generations before us and are every bit as effective as those being pushed on us. We research and educate ourselves, then make decisions based on what is best for our family. Continue reading