It has been far too long since I have written an update on Annalise.
I think that I have been waiting until things in her progress changed
for the better, but reality is, the last few months have been very tough
on her and we are still waiting for the change for the better. Maybe
by writing out all that she has been going through will help turn the
tide! It's worth a shot!
Annalise appears to have gone through another phase of regression. She has been sick multiple times over the past 6 months and with each illness it seemed like she moved a little bit further away from where she was. That usually happens when they get sick, but most times it is temporary and although it takes a long time to recover, they often make it back to their past normal. This time she just doesn't seem to be bouncing back. We seem to be dealing with a new normal. Some of the things we have noticed are:
--Increased spasticity in both her upper and lower body. She is so tight much of the time. Lots of stretching, massage, and oils help with some of the increased tightness and the pain that comes with it.
--Probably the biggest thing is her increase in fatigue. She gets tired/runs out of energy so quickly. Where she used to be able to walk in her walker most of the time, she is only able to go short distances now without getting so tired that she needs to be carried. She is spending a lot more time in her wheelchair now then she has ever had to. She gets tired when she is trying to hold herself up in her chair to eat. As always though, she has good moments and bad moments. She still has times throughout most days when her voice is strong and clear, or she is able do more. We love those moments! It's just that those moments have gotten a bit shorter and fewer and farther between.
--decreased strength throughout her body. When crawling, her arms often give out from under her and she ends up falling onto her forehead. It's kind of hard to explain, but her crawl now consists more of just sitting back on her legs and slowly pulling herself forward with her arms while scooting her backside along. Honestly, she doesn't do a whole lot of crawling anymore. She has gone more to lying on her stomach and pulling/wiggling herself forward whenever she is out of her walker.
--Considerably more scissoring of her legs. She can hardly walk more than a step or two now without her feet getting tangled. She has to stop and really focus on getting them apart so that she can keep walking. It appears that this is more of an issue with her hip rather than her feet and very possibly being caused by her increased spasticity and decrease in strength. We have spoken with multiple doctors about this over the past few months and multiple times I have heard "it looks like progression of the disease. There is nothing more we can really do about it at this time."
Like always, I wasn't really okay with that answer so I started talking with therapists and other moms. We have found a new type of AFOs that are more flexible and that seem to be helping some. We are currently looking into a brace (and hoping it will get approved by insurance) that will give her hip some support and help keep her legs separated when she walks. Hopefully that will make things a little easier and less frustrating for her.
--The end of January, Annalise had a swallow study done. They did not see any aspiration, but they did see some penetration which is when the food or liquid goes into the trachea and stays above the vocal cords. Our GI was concerned about this because if they see penetration during the few minutes of a swallow study, it is possible that there is some aspiration going on as well. Annalise did have pneumonia this year and does have trouble with getting dehydrated quickly...both of which can be signs of silent aspiration.
--Annalise has had multiple fits of uncontrolled laughter and/or crying. It seems to be most evident right after she has been sick. When I first noticed it, we just thought she was being silly...because she does have those times. However, as it continued on for about 3 days that time, and again a few weeks later when she had been sick again, it appeared more and more that it was happening at odd times and places and that she did not seem to have control over it. After "laughing" for 3 days, she spent about a day and a half having "crying" episodes. Again, they came at odd times and did not seem to be controlled by her. After seeing this happen multiple times, I spoke with her neurologist who decided to order an EEG with hopes of ruling out seizures as the cause.
So in April, Annalise had her first EEG. Although it showed no seizures, the EEG results came back abnormal because of some "slowing of the background". Dr. Narayanan also said there was a "fair amount of electrode artifact throughout. But there were times when she had a nice 9 Hz background rhythm". I still don't completely understand what that means so I will be talking more with him about that this week. Either way, it looks like the laughing/crying fits are not due to seizures, so why that is happening is still an unknown. There really are so many things that are still unknown.
I think those are the major changes we have seen. Less then a month after the wonderful miracle we saw of her taking a few independent steps, she got sick and has never completely made it back to her normal. I have not given up hope that she will be able to take steps again, but as of now, she is no longer able to even stand independently at all...not even for a few seconds. It is so frustrating to see how long it takes for her to gain these milestones and then how quickly they can be lost again. So frustrating!
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On a positive note...Annalise is one tough little fighter! She is so determined. She is independent in every way she possibly can be. She lives life to the fullest that she possible can and does not seem to want to waste one minute of it. As some things become harder for her to accomplish, she figures out other ways to get what she wants/needs. She is not going to give up this fight easily.
Her imagination is still going strong. She comes up with some of the funniest and most creative things. She is beautiful and continues to grow taller and taller. She often talks about swimming with dolphins and living in a castle. When I get her up in the morning, she loves to tell me all about the dreams that she has...her latest one is a dream where she is swimming with a pink dolphin. :) Overall, she is a happy!
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Although it hurts my heart to see my baby girl struggle, it makes my heart happy to spend every moment I can with her. She is the joy of my life, the princess of our home!
Annalise appears to have gone through another phase of regression. She has been sick multiple times over the past 6 months and with each illness it seemed like she moved a little bit further away from where she was. That usually happens when they get sick, but most times it is temporary and although it takes a long time to recover, they often make it back to their past normal. This time she just doesn't seem to be bouncing back. We seem to be dealing with a new normal. Some of the things we have noticed are:
--Increased spasticity in both her upper and lower body. She is so tight much of the time. Lots of stretching, massage, and oils help with some of the increased tightness and the pain that comes with it.
--Probably the biggest thing is her increase in fatigue. She gets tired/runs out of energy so quickly. Where she used to be able to walk in her walker most of the time, she is only able to go short distances now without getting so tired that she needs to be carried. She is spending a lot more time in her wheelchair now then she has ever had to. She gets tired when she is trying to hold herself up in her chair to eat. As always though, she has good moments and bad moments. She still has times throughout most days when her voice is strong and clear, or she is able do more. We love those moments! It's just that those moments have gotten a bit shorter and fewer and farther between.
--decreased strength throughout her body. When crawling, her arms often give out from under her and she ends up falling onto her forehead. It's kind of hard to explain, but her crawl now consists more of just sitting back on her legs and slowly pulling herself forward with her arms while scooting her backside along. Honestly, she doesn't do a whole lot of crawling anymore. She has gone more to lying on her stomach and pulling/wiggling herself forward whenever she is out of her walker.
--Considerably more scissoring of her legs. She can hardly walk more than a step or two now without her feet getting tangled. She has to stop and really focus on getting them apart so that she can keep walking. It appears that this is more of an issue with her hip rather than her feet and very possibly being caused by her increased spasticity and decrease in strength. We have spoken with multiple doctors about this over the past few months and multiple times I have heard "it looks like progression of the disease. There is nothing more we can really do about it at this time."
Like always, I wasn't really okay with that answer so I started talking with therapists and other moms. We have found a new type of AFOs that are more flexible and that seem to be helping some. We are currently looking into a brace (and hoping it will get approved by insurance) that will give her hip some support and help keep her legs separated when she walks. Hopefully that will make things a little easier and less frustrating for her.
--The end of January, Annalise had a swallow study done. They did not see any aspiration, but they did see some penetration which is when the food or liquid goes into the trachea and stays above the vocal cords. Our GI was concerned about this because if they see penetration during the few minutes of a swallow study, it is possible that there is some aspiration going on as well. Annalise did have pneumonia this year and does have trouble with getting dehydrated quickly...both of which can be signs of silent aspiration.
--Annalise has had multiple fits of uncontrolled laughter and/or crying. It seems to be most evident right after she has been sick. When I first noticed it, we just thought she was being silly...because she does have those times. However, as it continued on for about 3 days that time, and again a few weeks later when she had been sick again, it appeared more and more that it was happening at odd times and places and that she did not seem to have control over it. After "laughing" for 3 days, she spent about a day and a half having "crying" episodes. Again, they came at odd times and did not seem to be controlled by her. After seeing this happen multiple times, I spoke with her neurologist who decided to order an EEG with hopes of ruling out seizures as the cause.
So in April, Annalise had her first EEG. Although it showed no seizures, the EEG results came back abnormal because of some "slowing of the background". Dr. Narayanan also said there was a "fair amount of electrode artifact throughout. But there were times when she had a nice 9 Hz background rhythm". I still don't completely understand what that means so I will be talking more with him about that this week. Either way, it looks like the laughing/crying fits are not due to seizures, so why that is happening is still an unknown. There really are so many things that are still unknown.
I think those are the major changes we have seen. Less then a month after the wonderful miracle we saw of her taking a few independent steps, she got sick and has never completely made it back to her normal. I have not given up hope that she will be able to take steps again, but as of now, she is no longer able to even stand independently at all...not even for a few seconds. It is so frustrating to see how long it takes for her to gain these milestones and then how quickly they can be lost again. So frustrating!
On a positive note...Annalise is one tough little fighter! She is so determined. She is independent in every way she possibly can be. She lives life to the fullest that she possible can and does not seem to want to waste one minute of it. As some things become harder for her to accomplish, she figures out other ways to get what she wants/needs. She is not going to give up this fight easily.
Her imagination is still going strong. She comes up with some of the funniest and most creative things. She is beautiful and continues to grow taller and taller. She often talks about swimming with dolphins and living in a castle. When I get her up in the morning, she loves to tell me all about the dreams that she has...her latest one is a dream where she is swimming with a pink dolphin. :) Overall, she is a happy!
Although it hurts my heart to see my baby girl struggle, it makes my heart happy to spend every moment I can with her. She is the joy of my life, the princess of our home!
