Week of MD appointments....
That is what last week was....week of MD appointments. We started off the week with the orthopedists. Brian and I were very surprised to learn that Ian's scoliosis had not changed. We both thought it had. We were not surprised to learn that Ian needed a new back brace, it had been getting tighter around his stomach. After his appointment, Brian decided to drive over to the orthopedic appliance store (we could not remember the name of it so driving over was the best we could do) and at least figured we could make an appointment then if they could not fit him in. We got lucky they were able to fit him in....wait and here is the pattern he picked for his new TLSO (thoraco-lumbo-sacral-orthosis).
This one is better compared to the one he currently has....
I guess Ian decided to tone it down a little bit...now we wait and go back in a few weeks to get fitted.
Our next appointment was a with a urologists. We were not sure what to expect with this appointment, however, it went well. We were basically looking for different ways to take Ian to the bathroom. For those of you who know him....he says "I am a boy, I stand to go." Well that is not so easy to do all of the time. So what we were told...pretty much to let him stand, try to get him to sit or use a urinal. So we will continue to adapt as best as we can with this given Ian's determination to "stand".
Next was the pulmonologist; this appointment is the one that is going to bring the most changes to our normal. We got his sleep study results back from a few weeks ago....Ian has mild sleep apnea. We knew this would eventually happen and that Ian would need to start either BiPap or CPap...we should know by the end of the week which one he will be on. He will need to be on this when he sleeps. While we were at the MD, they fitted Ian for the mask he will need for the machine. Another sleep study will need to be done in order to determine the parameters the machine will be on....this appointment was not a surprise for us. We learned sometime ago that Ian would eventually end up on either one of these machines for respiratory support, we just did not know when.
So now we wait to get the new TLSO and to find out if BiPap or CPap will be the winner.
One more week of summer vacation and the kids go back to school, we are all ready for the school routine to come back into our home.
Our next appointment was a with a urologists. We were not sure what to expect with this appointment, however, it went well. We were basically looking for different ways to take Ian to the bathroom. For those of you who know him....he says "I am a boy, I stand to go." Well that is not so easy to do all of the time. So what we were told...pretty much to let him stand, try to get him to sit or use a urinal. So we will continue to adapt as best as we can with this given Ian's determination to "stand".
Next was the pulmonologist; this appointment is the one that is going to bring the most changes to our normal. We got his sleep study results back from a few weeks ago....Ian has mild sleep apnea. We knew this would eventually happen and that Ian would need to start either BiPap or CPap...we should know by the end of the week which one he will be on. He will need to be on this when he sleeps. While we were at the MD, they fitted Ian for the mask he will need for the machine. Another sleep study will need to be done in order to determine the parameters the machine will be on....this appointment was not a surprise for us. We learned sometime ago that Ian would eventually end up on either one of these machines for respiratory support, we just did not know when.
So now we wait to get the new TLSO and to find out if BiPap or CPap will be the winner.
One more week of summer vacation and the kids go back to school, we are all ready for the school routine to come back into our home.
Alyssa Faye Thank you for these updates. I am so glad that I am able to stay informed about what is going on with Ian even from so far away, and regret that I am not closer to help out! He is truly the example of determination, perseverance, and resilience that we should all aspire to be.
ReplyDeleteLisa Allentoff Hess We will be at 3 doctors this week too. Naomi has a bi-pap, and, although, it took some getting used to she sleeps really well now. Good luck! Let's catch up for lunch in Sept or Oct on a Tuesday.
Charles R Hentz Yeah everything AP said...ditto. Love, big hugs and kisses for all.