February 1st, we loaded up bright and early to head to Saskatoon for our first SB clinic in 5 months! We were supposed to go in December, but several of the doctors had to cancel, and then the same thing happened in January. So February it was. I've been really anxious about this clinic mostly because Madison was supposed to try out a standing frame, and also because I was really excited for all of Madison's doctors to see how awesome she has been doing!
Once we arrived in Saskatoon our first stop was RUH for X-rays and bloodwork. Every time I go there, all I think of is how excited I will be when the Children's Hospital is built. And that cannot come soon enough. We know that we are going to have to continue to visit this hospital, but I will not be sad when we can finally end our relationship with RUH. Luckily, though there were no line-ups in X-ray or the lab so we didn't have to spend a whole lot of time there. Once we were done with Maddi's tests, we went to the NICU to visit Doreen. I'm not sure of her official title but she is a nurse who looks after the families of the babies in the NICU. She was so nice to us, brought us information on Spina Bifida and really helped us to get through that rough time. We were very thankful that we were able to see her that day as she informed us that she would be retiring in a month!
We left RUH and headed towards the Kinsmen Children's Centre. Once there we learned that Maddi's physiotherapist Kathy was away sick. No chance to try out a standing frame. Here's a rundown of the doctor's and therapists reports:
The clinic nurse - Madison weighed in at a whopping 28lbs 6oz. 99th percentile...yikes. Her length was 30.5 inches which is 97th percentile. She is a big girl. I had kind of hoped she might not have been that high on the charts as we have cut back on her formula intake and we don't really feed her any bad food. She mostly eats meats, fruits and vegetables with a tiny bit of carbs in her diet. Lynn, the nurse, told us that this is common and that once we get her in the standing frame, and then eventually walking, she will shed some of that weight. Here's hoping she's right!
Occupational Therapy (with a quick visit from a different physiotherapist) - Madison is right on track and doing everything she should be in terms of how she is playing. She's fitting shapes into holes, exploring cause and effects, loves putting things in and taking things out of containers, and is extremely curious about the world around here. (Proud Mom's note - I swear she is going to be an engineer because she is always looking at and analyzing how things work!)
Urologist - I was a little scared for this one as I had catheterized her a few times before we went and the results were higher than they should be. But, thankfully Dr. Weckworth was happy with everything and said we don't need to start cathing her yet. Her renal ultrasound was fine and everything looked good. He did explain that likely when we get to the point where we are looking to get her out of diapers is when we will need to start catheterizing her. So good news for now, but we still need to watch her for urinary tract infections, and any signs that she isn't peeing as she should.
Neurosurgeon - I have been so relieved that Maddi hasn't needed a shunt that I was actually excited to see Dr. Vitale and show off how she has beat the odds. Something like 90% of people with Spina Bifida have shunts! This is like winning the lottery. Although, I was starting to feel less worried about hydrocephalus because I had learned about the procedure called the ETV. This is where they create a new pathway for fluid to be released from the ventricles in the brain when the original pathway has been blocked. From what I read, this procedure is not effective in infants, but as kids hit 1 year and beyond, it becomes a more viable option. It is succesful 75% of the time, allowing kids to avoid having a shunt. The issues was that it seemed to be a relatively new thing that was not done by very many doctors. I had thought that if it came to this we would be packing up and heading to Philadelphia as there is a neurosurgon there that does it. Well, imagine my surprise when I learn from Madison's neurosurgon that he does the ETV!!! It was such a relief to know that if it came to this, we could get it done locally. Although, he did tell us that only 10-20% of patients are candidates for it. Chances are she won't need it though because he gave her a 98% chance of never needing developing hydrocephalus now that she has made it this long without it!!
Pediatrician - This was the first time we saw a pediatrician at the clinic and basically the whole appointment was us recounting our story and answering the same questions for the millionth time.
Dr. Dzus, Madison's Orthopedic Surgeon, was not able to make it but she was going to look at Maddi's hip x-ray and determine the severity of her hip displaysia. Let's all hope it looks good because otherwise she won't be ready to use the standing frame. She did get measured for it though as it will be built at the Abilities Centre in Saskatoon.
That basically sums up out experience there. It was a long day for all of us. Madison wouldn't nap at all but I was able to catch a 10 minute power nap while we were waiting at the clinic:)
When we were on our way home I mentioned to Greg that it seems like a waste to drive all that way and not learn anything new and just have everyone say she's fine. He brought me back to reality when he replied that it was better than having to drive up and hear bad news. Which was so true. We are so lucky that all has been well and there are currently no concerns. I have read so many stories about babies with Spina Bifida and know that we could be in a much worse situation than we are. Driving to Saskatoon for that reassurance isn't such a big deal.
All in all, a good day full of good reports on Madison's progress. We already know she's perfect but it's great when we hear all her doctors tell us that too!
We left RUH and headed towards the Kinsmen Children's Centre. Once there we learned that Maddi's physiotherapist Kathy was away sick. No chance to try out a standing frame. Here's a rundown of the doctor's and therapists reports:
The clinic nurse - Madison weighed in at a whopping 28lbs 6oz. 99th percentile...yikes. Her length was 30.5 inches which is 97th percentile. She is a big girl. I had kind of hoped she might not have been that high on the charts as we have cut back on her formula intake and we don't really feed her any bad food. She mostly eats meats, fruits and vegetables with a tiny bit of carbs in her diet. Lynn, the nurse, told us that this is common and that once we get her in the standing frame, and then eventually walking, she will shed some of that weight. Here's hoping she's right!
Occupational Therapy (with a quick visit from a different physiotherapist) - Madison is right on track and doing everything she should be in terms of how she is playing. She's fitting shapes into holes, exploring cause and effects, loves putting things in and taking things out of containers, and is extremely curious about the world around here. (Proud Mom's note - I swear she is going to be an engineer because she is always looking at and analyzing how things work!)
Urologist - I was a little scared for this one as I had catheterized her a few times before we went and the results were higher than they should be. But, thankfully Dr. Weckworth was happy with everything and said we don't need to start cathing her yet. Her renal ultrasound was fine and everything looked good. He did explain that likely when we get to the point where we are looking to get her out of diapers is when we will need to start catheterizing her. So good news for now, but we still need to watch her for urinary tract infections, and any signs that she isn't peeing as she should.
Neurosurgeon - I have been so relieved that Maddi hasn't needed a shunt that I was actually excited to see Dr. Vitale and show off how she has beat the odds. Something like 90% of people with Spina Bifida have shunts! This is like winning the lottery. Although, I was starting to feel less worried about hydrocephalus because I had learned about the procedure called the ETV. This is where they create a new pathway for fluid to be released from the ventricles in the brain when the original pathway has been blocked. From what I read, this procedure is not effective in infants, but as kids hit 1 year and beyond, it becomes a more viable option. It is succesful 75% of the time, allowing kids to avoid having a shunt. The issues was that it seemed to be a relatively new thing that was not done by very many doctors. I had thought that if it came to this we would be packing up and heading to Philadelphia as there is a neurosurgon there that does it. Well, imagine my surprise when I learn from Madison's neurosurgon that he does the ETV!!! It was such a relief to know that if it came to this, we could get it done locally. Although, he did tell us that only 10-20% of patients are candidates for it. Chances are she won't need it though because he gave her a 98% chance of never needing developing hydrocephalus now that she has made it this long without it!!
Pediatrician - This was the first time we saw a pediatrician at the clinic and basically the whole appointment was us recounting our story and answering the same questions for the millionth time.
Dr. Dzus, Madison's Orthopedic Surgeon, was not able to make it but she was going to look at Maddi's hip x-ray and determine the severity of her hip displaysia. Let's all hope it looks good because otherwise she won't be ready to use the standing frame. She did get measured for it though as it will be built at the Abilities Centre in Saskatoon.
That basically sums up out experience there. It was a long day for all of us. Madison wouldn't nap at all but I was able to catch a 10 minute power nap while we were waiting at the clinic:)
When we were on our way home I mentioned to Greg that it seems like a waste to drive all that way and not learn anything new and just have everyone say she's fine. He brought me back to reality when he replied that it was better than having to drive up and hear bad news. Which was so true. We are so lucky that all has been well and there are currently no concerns. I have read so many stories about babies with Spina Bifida and know that we could be in a much worse situation than we are. Driving to Saskatoon for that reassurance isn't such a big deal.
All in all, a good day full of good reports on Madison's progress. We already know she's perfect but it's great when we hear all her doctors tell us that too!
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