Saturday, September 15, 2018
Kenzie's Benefit Dinner
The Knights of Columbus Council 8144, to which Kevin belongs, held a benefit steak and lobster dinner for Kenzie!!! It was an amazing and humbling experience, as they had the largest turnout ever (over 240 people) to any of their dinners!! The whole parish hall was packed, and Kaitlyn got to pick the winning number for 50/50. There was lots of love and support shown, and we are truly grateful. Events like these really show how much support is out there!!!! Everything raised is going towards Kenzie's procedures and other costs, such as traveling and the like. We are also starting to realize furniture is becoming an issue (Kenzie's bed, how to change her diapers, etc), so there is always a need. On that same subject, somebody referred Kenzie to Make a Wish Maine, and we are currently in the medical review part of the process. So fingers crossed, we will see how that works out!! Here are some pictures and the menu from the dinner.
Kenzie Health Update and 1st Day of School!!!
Over the past couple of weeks we have made two trips to Massachusetts for Kenzie to see doctors at Boston Children's Hospital.
The first visit was to the main campus in Boston, where Kenzie underwent a few tests and saw Dr. Rodan, her neurologist. Initially the day started off with Kenzie going to cardiology and getting an EKG and echocardiogram. These are done on an annual basis not because Kenzie currently has heart issues, but because with her underlying mitochrondial symptoms (the batteries of the body), it needs to be checked just to be safe. As was expected, everything checked out A OK this visit. Kenzie was a little irritated with the whole process, but thanks to games on Mommy's phone it went a little smoother. The second test was a barium swallow study, where the objective is to find out if Kenzie is safely eating and drinking, so that she does not aspirate. Kenzie was nice enough to show them that she can safely eat and swallow pureed foods and whole foods without penetrating her airway, but was not cooperative enough with drinking water to get a full picture. What little they got showed that the water was getting close to Kenzie's airway, but was not conclusive enough. At this point and time they do not see a need to make any changes to the way Kenzie eats, and to just remind her to take a few sips and breathe while drinking. If it flares up again or remains a concern, we will follow up in clinic and if needed attempt to redo the test. Kenzie can be a little stubborn at times, and she was not about to drink anything more for them!!!
Dr. Rodan squeezed Kenzie in since we were already coming down for the above tests. He definitely goes out of his way for her, and we greatly appreciate it. Dr. Rodan thought Kenzie looked good, and a discussion was had about whether one of her medications that is designed to help her with her hand movements is having any effect or not. So we are trying to keep an eye on it and see if we can tell, because if it isn't , then Kenzie would be taken off of that medicine. We also discussed what other medications Kenzie may be able to take when she gets bigger to help with her extra movements, and the possibility of surgery at some point. Normally with surgery, the side effects or risks are pretty well known, but with Kenzie and her rare genetic disorder, there isn't as much known, and noone in her small group of patients with a VPS13D gene disorder, have ever had the surgery. So far now that is on the far back burner, but it is worth bringing up, as it could come to the forefront at some point. While much is not known about the surgery, it would most likely be brain surgery. Again, no need to worry on this point quite yet, for it may never happen, but it is at least something the doctors have in their pockets as a tool if needed. Dr. Rodan is also keeping an eye on Kenzie's strabismus, or misalignment of her eyes. Her eye doctor here has gone back and forth on surgery to help it, as it seems to be fluctuating which eye or side of her body it is affecting. Dr. Rodan also wants us to keep an eye on it, and if it seems to be worsening additional imaging, such as an MRI, would be needed to see if anything is changing in her brain.
Our second visit to Mass was to the Boston Childrens Hospital in Lexington. This was our first visit at this facility and it is very nice!! Here we saw Dr. Fogleman, Kenzie's orthopedic doctor. Looking Kenzie over he could tell, as we could, that she has become very tight again in her legs and hamstrings. With that being said Kenzie has been scheduled for botox and phenol injections at Boston Childrens Hospital on October 12th, which will require general anesthesia. She needs to have it done at the main campus so she can have a critical care anesthesia team with her. This procedure will help loosen up her hamstrings and muscles to make therapy much more viable and useful. Dr. Fogleman also noted that at our next visit we will be adding a second orthopedic surgeon to our team. Again, while surgery is not yet needed, it seems Kenzie is almost certainly destined for orthopedic surgery at some point. Whether it be correcting her hips or trying to lengthen her hamstrings. Needless to say, much more to come on this as we get into winter and the new year.
Lastly, Kenzie has started her new school year at the Morrison Center. They do amazing work here and Kenzie is always happy to go. Her therapy team just got approval for Kenzie's wheelchair. It should be coming with both a stroller base and a base that we can use in the home. In the meantime they have allowed us to take home the demo unit until her actual chair arrives. It is a Leckey Squiggles chair, so it is coming from Europe, and has lots of functionality for Kenzie, allowing her to truly see the world the way a child should be able to. Such a game changer!!
Below are pictures of Kenzie in Boston, having her first day of school, and in her wheelchair!!!
The first visit was to the main campus in Boston, where Kenzie underwent a few tests and saw Dr. Rodan, her neurologist. Initially the day started off with Kenzie going to cardiology and getting an EKG and echocardiogram. These are done on an annual basis not because Kenzie currently has heart issues, but because with her underlying mitochrondial symptoms (the batteries of the body), it needs to be checked just to be safe. As was expected, everything checked out A OK this visit. Kenzie was a little irritated with the whole process, but thanks to games on Mommy's phone it went a little smoother. The second test was a barium swallow study, where the objective is to find out if Kenzie is safely eating and drinking, so that she does not aspirate. Kenzie was nice enough to show them that she can safely eat and swallow pureed foods and whole foods without penetrating her airway, but was not cooperative enough with drinking water to get a full picture. What little they got showed that the water was getting close to Kenzie's airway, but was not conclusive enough. At this point and time they do not see a need to make any changes to the way Kenzie eats, and to just remind her to take a few sips and breathe while drinking. If it flares up again or remains a concern, we will follow up in clinic and if needed attempt to redo the test. Kenzie can be a little stubborn at times, and she was not about to drink anything more for them!!!
Dr. Rodan squeezed Kenzie in since we were already coming down for the above tests. He definitely goes out of his way for her, and we greatly appreciate it. Dr. Rodan thought Kenzie looked good, and a discussion was had about whether one of her medications that is designed to help her with her hand movements is having any effect or not. So we are trying to keep an eye on it and see if we can tell, because if it isn't , then Kenzie would be taken off of that medicine. We also discussed what other medications Kenzie may be able to take when she gets bigger to help with her extra movements, and the possibility of surgery at some point. Normally with surgery, the side effects or risks are pretty well known, but with Kenzie and her rare genetic disorder, there isn't as much known, and noone in her small group of patients with a VPS13D gene disorder, have ever had the surgery. So far now that is on the far back burner, but it is worth bringing up, as it could come to the forefront at some point. While much is not known about the surgery, it would most likely be brain surgery. Again, no need to worry on this point quite yet, for it may never happen, but it is at least something the doctors have in their pockets as a tool if needed. Dr. Rodan is also keeping an eye on Kenzie's strabismus, or misalignment of her eyes. Her eye doctor here has gone back and forth on surgery to help it, as it seems to be fluctuating which eye or side of her body it is affecting. Dr. Rodan also wants us to keep an eye on it, and if it seems to be worsening additional imaging, such as an MRI, would be needed to see if anything is changing in her brain.
Our second visit to Mass was to the Boston Childrens Hospital in Lexington. This was our first visit at this facility and it is very nice!! Here we saw Dr. Fogleman, Kenzie's orthopedic doctor. Looking Kenzie over he could tell, as we could, that she has become very tight again in her legs and hamstrings. With that being said Kenzie has been scheduled for botox and phenol injections at Boston Childrens Hospital on October 12th, which will require general anesthesia. She needs to have it done at the main campus so she can have a critical care anesthesia team with her. This procedure will help loosen up her hamstrings and muscles to make therapy much more viable and useful. Dr. Fogleman also noted that at our next visit we will be adding a second orthopedic surgeon to our team. Again, while surgery is not yet needed, it seems Kenzie is almost certainly destined for orthopedic surgery at some point. Whether it be correcting her hips or trying to lengthen her hamstrings. Needless to say, much more to come on this as we get into winter and the new year.
Lastly, Kenzie has started her new school year at the Morrison Center. They do amazing work here and Kenzie is always happy to go. Her therapy team just got approval for Kenzie's wheelchair. It should be coming with both a stroller base and a base that we can use in the home. In the meantime they have allowed us to take home the demo unit until her actual chair arrives. It is a Leckey Squiggles chair, so it is coming from Europe, and has lots of functionality for Kenzie, allowing her to truly see the world the way a child should be able to. Such a game changer!!
Below are pictures of Kenzie in Boston, having her first day of school, and in her wheelchair!!!
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