First, THANK YOU to all our dear friends and family for your kind words, love, and support. Many of you have been with us on this journey for years and some of you are new. You are all so important to our family. THANK you. We know that your prayer support and your personal encouragement are keeping us fueled up and going forward.
In April we broke our almost two and a half year streak of hospital-free life for Alex. At the time the hospitalization didn't make much sense. Three weeks later we admitted her again. Three weeks later the same situation developed but we were able to stay out of the hospital! Then three weeks later it all started again... at this point we were identifying different parts of a pattern. Then three weeks later we were at it again!
So, what is happening, you ask? It appears that my 13 year old LCHAD girl is living up to her age. She is in the adolescent stage and is rapidly growing! (Seriously, you should she her growth chart and all the clothes that I have pulled out of her closet!)
It appears that we are in a stage of high growth and probably lots of fun, fun hormones. One of these alone would probably be enough to cause trouble with LCHAD but the combination - WOW!
Every 21 days she wakes up and it's like only half of her is working. Her eyes are dim, her muscles hurt, sometimes her speech is slurred. She even struggles with her mental clarity. These "episodes" have lasted a full seven days (with or without the iv) and then she returns to normal for two weeks. Then it all starts again! This is a difficult thing to watch. She is trying to be her normal positive self but is struggling at times. We are trying to continue to go about life normally around her. It is hard but we keep going.
As the summer continued with the same patterns we knew we would need to figure out how to deal with school. Our AMAZING school worked diligently to find a plan so Alex would be able to keep some level of her normal life as her body would allow. We have always known our school was special. It continues to provide the most normal life for her that she can ask for and they are working hard to keep her safe as well as teach her Algebra!
Through all of this it is clear that Alex has AMAZING friends. They have entertained her at the hospital, "Alex sat" her at different events when she just wasn't herself but we drug her there anyway, they have sent messages and cards, they have brought LOTS of slushies. They MISS her when she isn't at the usual events. They have been amazing. My daughter is blessed in abundance with friends.
I keep pointing out to her that while things are not easy her body is really trying to grow up normally. Her labs show NO problems. She eats well and has been great at working at all our nutritional attempts to manage this. Most adults would not have been as cooperative. It is hard to process that God continues to answer our prayers for her to grow and develop. Her body seems to be needing help along the way.
Changes ahead.... (we hope)
She was able to start school with two strong weeks.... THEN a three week long period of time where she could not snap out of it. This time the iv did the trick.
Now what??? Well we have a new idea. We are in uncharted waters and has reinforced the idea that we need to keep moving forward just one step at a time.
Every 21 days she wakes up and it's like only half of her is working. Her eyes are dim, her muscles hurt, sometimes her speech is slurred. She even struggles with her mental clarity. These "episodes" have lasted a full seven days (with or without the iv) and then she returns to normal for two weeks. Then it all starts again! This is a difficult thing to watch. She is trying to be her normal positive self but is struggling at times. We are trying to continue to go about life normally around her. It is hard but we keep going.
As the summer continued with the same patterns we knew we would need to figure out how to deal with school. Our AMAZING school worked diligently to find a plan so Alex would be able to keep some level of her normal life as her body would allow. We have always known our school was special. It continues to provide the most normal life for her that she can ask for and they are working hard to keep her safe as well as teach her Algebra!
Through all of this it is clear that Alex has AMAZING friends. They have entertained her at the hospital, "Alex sat" her at different events when she just wasn't herself but we drug her there anyway, they have sent messages and cards, they have brought LOTS of slushies. They MISS her when she isn't at the usual events. They have been amazing. My daughter is blessed in abundance with friends.
I keep pointing out to her that while things are not easy her body is really trying to grow up normally. Her labs show NO problems. She eats well and has been great at working at all our nutritional attempts to manage this. Most adults would not have been as cooperative. It is hard to process that God continues to answer our prayers for her to grow and develop. Her body seems to be needing help along the way.
Changes ahead.... (we hope)
She was able to start school with two strong weeks.... THEN a three week long period of time where she could not snap out of it. This time the iv did the trick.
Now what??? Well we have a new idea. We are in uncharted waters and has reinforced the idea that we need to keep moving forward just one step at a time.
Prayers from WI!! I am so grateful Aubrey has her to look up to and learn from, via Facebook!! (Wished we lived closer!!)
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