Happy Sneak Peak Day!!!! That is now officially what July 29th will always be for our family.
One year ago today was the date of our fetal surgery, wow. I cannot believe that it's already been a full year since we walked into MOTT for one of the biggest days of our lives. It's crazy to think that within that amount of time I've... sat in a bed for 11 weeks, had a baby who stayed in the hospital for 21 days, had a 2 month old who went through a second surgery, had another surgery myself, went back to work, and it's all lead to a 9.5 month old who has officially started to army crawl :), what a year.
We have been pretty busy in the past month with him becoming a 9 month old baby, going to our first Mylo. Clinic at MOTT and getting ready for another surgery in August. However, none of that has stopped us from having fun this summer enjoying the sun and the pool; but first, we can talk about the clinic.
The Mylo. Clinic was created for parents and families of kids with different disabilities (Mylo. is specific for Spina Bifida) to come to MOTT and to see all of the specialty doctors in one day rather than having different appointments all spread out. It is incredibly helpful for those people who don't live near MOTT, like we do, so they can spend the day in Ann Arbor rather than 6 different days a month.
Our appointments started at 8:30 in the morning and we were warned that it could take 3-4 hours to see everyone. We stay in the same room but the doctors rotate through everyone and there is a little check list outside of every door so they can make sure they know which doctor has seen each patient.
We started with the PM&R doctor (Physical Medicine) which was our first time being seen. Along with PM&R came a physical therapist, occupational therapist, and assistant. They all seemed very impressed with Carter and what he was able to do as he tried to crawl on the little table he was hanging out on. He then got on all fours to show his rocking ability and followed that trick by pulling up on me, he really wanted to show off :). After hearing about how great he is doing we were told that he should still be getting PT and that they wanted him to start again pretty soon. We are currently waiting to hear back to schedule something. We were also told that Carter would need a brace on his right foot/ankle because it's still turned in a lot however, he wouldn't get that brace until he was somewhere between 12-15 months when we would start learning how to walk or bearing more weight on his legs. After all of that news PM& R said that we would hear back from them soon to schedule PT and they were out the door.
Next came Neuro. which we figured would be pretty quick because Carter didn't have an ultrasound or a MRI to check his ventricle sizes because his last one was in May. The neuro surgeon came in and showed us his most recent ultrasound which was great and asked us some questions about how he was doing and went over what to look for if his shunt malfunctions or gets an infection. It's something that we will always be on the lookout for and it's more than likely he will need a replacement but we are hoping and praying that he won't for a long time.
Third up was urology. This was an appointment we were anxious about because we had a lot to talk about. At our last appointment in January we were told that he would need a surgery to help with his nether-regions. I was told that this would happen in the summer and when we called to try and make an appointment they said we wouldn't be seen until September, which was not happening. After talking to the nurse practitioner we were able to figure something out and get him in a bit earlier which I was thankful for because if Carter has to have another surgery I would rather it be in the summer where I can be with him and not during the school year.
Every 6 months Carter also has to have a kidney and bladder function test which is coming up in August since his last one was in January. This is something that, unfortunately, Carter will have to have checked every 6 months for the rest of his life and we just hope that there isn't any re-flux and that his kidneys and bladder continue to look good and not have any complications. As of now Carter will have surgery on August 25th, which as long as his breathing during and post-surgery are good it will be outpatient and he can come home.
The last person we saw for our first Mylo. clinic day was a social worker and they usually only come to the first clinic appointment to ask questions and check to see if there is anything they can do to help or support you. That was a pretty quick visit and by 11:30 we were out the door, only 3 hours at MOTT!
Since Mylo. day Carter has been having fun playing at home with me or the puppies, hanging out at Gigi and Poppa's house, or chilling with Aunt Emily at the pool. Probably twice a week we head to Emily's and Carter plays outside and goes swimming for about an hour. He's a fan of the water, which I'm thankful for as my entire family are water people.
The next few weeks are going to to busy because we have something planned with friends almost every day before I head back to work. From play dates to swimming and park days to our first family vacation across the east coast, Carter is a very busy little boy.
It's hard to imagine that our lives would have taken any other path than the one we (and MOTT) chose. Thinking back to last year if I had to to it all over again I would. No doubt about it.
How is this for a "poor quality of life"?
One year ago today was the date of our fetal surgery, wow. I cannot believe that it's already been a full year since we walked into MOTT for one of the biggest days of our lives. It's crazy to think that within that amount of time I've... sat in a bed for 11 weeks, had a baby who stayed in the hospital for 21 days, had a 2 month old who went through a second surgery, had another surgery myself, went back to work, and it's all lead to a 9.5 month old who has officially started to army crawl :), what a year.
We have been pretty busy in the past month with him becoming a 9 month old baby, going to our first Mylo. Clinic at MOTT and getting ready for another surgery in August. However, none of that has stopped us from having fun this summer enjoying the sun and the pool; but first, we can talk about the clinic.
The Mylo. Clinic was created for parents and families of kids with different disabilities (Mylo. is specific for Spina Bifida) to come to MOTT and to see all of the specialty doctors in one day rather than having different appointments all spread out. It is incredibly helpful for those people who don't live near MOTT, like we do, so they can spend the day in Ann Arbor rather than 6 different days a month.
Our appointments started at 8:30 in the morning and we were warned that it could take 3-4 hours to see everyone. We stay in the same room but the doctors rotate through everyone and there is a little check list outside of every door so they can make sure they know which doctor has seen each patient.
We started with the PM&R doctor (Physical Medicine) which was our first time being seen. Along with PM&R came a physical therapist, occupational therapist, and assistant. They all seemed very impressed with Carter and what he was able to do as he tried to crawl on the little table he was hanging out on. He then got on all fours to show his rocking ability and followed that trick by pulling up on me, he really wanted to show off :). After hearing about how great he is doing we were told that he should still be getting PT and that they wanted him to start again pretty soon. We are currently waiting to hear back to schedule something. We were also told that Carter would need a brace on his right foot/ankle because it's still turned in a lot however, he wouldn't get that brace until he was somewhere between 12-15 months when we would start learning how to walk or bearing more weight on his legs. After all of that news PM& R said that we would hear back from them soon to schedule PT and they were out the door.
Next came Neuro. which we figured would be pretty quick because Carter didn't have an ultrasound or a MRI to check his ventricle sizes because his last one was in May. The neuro surgeon came in and showed us his most recent ultrasound which was great and asked us some questions about how he was doing and went over what to look for if his shunt malfunctions or gets an infection. It's something that we will always be on the lookout for and it's more than likely he will need a replacement but we are hoping and praying that he won't for a long time.
Third up was urology. This was an appointment we were anxious about because we had a lot to talk about. At our last appointment in January we were told that he would need a surgery to help with his nether-regions. I was told that this would happen in the summer and when we called to try and make an appointment they said we wouldn't be seen until September, which was not happening. After talking to the nurse practitioner we were able to figure something out and get him in a bit earlier which I was thankful for because if Carter has to have another surgery I would rather it be in the summer where I can be with him and not during the school year.
Every 6 months Carter also has to have a kidney and bladder function test which is coming up in August since his last one was in January. This is something that, unfortunately, Carter will have to have checked every 6 months for the rest of his life and we just hope that there isn't any re-flux and that his kidneys and bladder continue to look good and not have any complications. As of now Carter will have surgery on August 25th, which as long as his breathing during and post-surgery are good it will be outpatient and he can come home.
The last person we saw for our first Mylo. clinic day was a social worker and they usually only come to the first clinic appointment to ask questions and check to see if there is anything they can do to help or support you. That was a pretty quick visit and by 11:30 we were out the door, only 3 hours at MOTT!
Since Mylo. day Carter has been having fun playing at home with me or the puppies, hanging out at Gigi and Poppa's house, or chilling with Aunt Emily at the pool. Probably twice a week we head to Emily's and Carter plays outside and goes swimming for about an hour. He's a fan of the water, which I'm thankful for as my entire family are water people.
Loving our pool days with Aunt Emily!!!
The next few weeks are going to to busy because we have something planned with friends almost every day before I head back to work. From play dates to swimming and park days to our first family vacation across the east coast, Carter is a very busy little boy.
It's hard to imagine that our lives would have taken any other path than the one we (and MOTT) chose. Thinking back to last year if I had to to it all over again I would. No doubt about it.
Just me and my elephant hanging out :)
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