Merry Christmas!
I think the last time i wrote you all it was before Halloween! Time flies when you are...um...alive i guess:)
Ayla has been sick for over 2 years now. This time 2 years ago we were amping up to take our girl in for a bone marrow draw to check for cancer. Many tests, surgeries, pain, tears, hopelessness, breaks (heart and bones), AND MIRACLES have happens since the beginning. We are here to say that God works in many amazing ways and we are so thankful for His promises.
Since i last wrote Ayla has had 2 more treatments (one of which warranted an infectious disease control room) and a Rhuematology appointment. Along with many other exciting things.
In November we had a 'possible' secondary exposure to chicken pox with the kids, which was why were were put in a "control" room for her treatment...it was rather boring b/c we (all of us) were confined to the room which means...take a deep breath...NO PLAY ROOM FOR THE KIDS. (Windsor Hosp has a good play room) Niether of the kids are vaccinated against it which isn't a big deal in itself, but b/c of the medications (immune supressents double duty with the new drug) it makes it pretty dangerous for Ayla to get it. It would warrant a 5 day hospital stay with immunoglobulin infusions. Praise the Lord they didn't get it:) (Truly an answer to prayer). Hopefully someday it will be safe for them to get it and we can get it over with!
We saw the Rhuem in London mid november. Ayla has grown a lot taller and heavier. So i think she's putting many minds at ease of the possible inhibiting of bone (limbs actually) growth. Her doc is happy to see the weight/height that she's gaining and how much happier she seems. She didn't notice any change in her Eosinophilac Facciitis, which i think she was hoping to see after 3 treatments. So we have 2 more to go (possibly 3) and they will reassess. This doctor is going on mat leave, so i'm really praying that we don't have to see someone new and have her assessment done by them! They are going to try and get us in to see the lead Rhuematologist at Sick Kids in Toronto for March (after her 6/7 treatment). We have seen him a couple times before, so i would feel better him seeing her than someone coming in clueless. We shall see. After the 6/7 treatment and assessment they will determine whether this experimental drug is working or not. If not, she will stop getting the infusions and we'll just continue as we have been with her home injections. If it does....then she will continue. Ayla's doctor shared this with us: at a rhuematology conference not long ago, Ayla's doctor met another doctor who had a patient (9 year old girl) that has EF, just like Ayla! It didn't deteriorate her as quickly and as powerfully as it did Ayla, but after 2 years of being on immunosupressants HER DISEASE DISAPPEARED! POOF! GONE WITHOUT A TRACE! It placed hope in our doctor about Ayla's situation, someday she may be perfectly well without a trace of this disease this side of Heaven.
We also have a Bone Mineral Density scheduled for March to follow up on the 3 broken legs and will meet with the endocrinologist shortly after.
The most recent treatment Ayla had this past friday. IT WENT AWESOME. You all know, Ayla has had a very difficult time (as well as many nurses) getting needles of anykind into her veins b/c of her disease. She has had much emotional trauma b/c of this. This past friday, PRAISE GOD, the IV went in perfectly! She didn't even shed a tear! I am pretty sure that is the first time ever (including almost all home injections) she has not cried for a needle AFTER OVER 2 YEARS! She even went and brought the nurse who did it a reindeer candy cane after, so she wasn't even mad at her:) That is a miracle in and of itself! Another wonderful thing that happened that day, was that their was an 11 year old girl, who saved her allowance all this year (and ask for donations from family) and donated $750 worth of toys for the kids admitted or in for treatments. So Ayla and Ezra got to pick something and they made little cards for whoever this kind little girl was:)
Ayla is doing very well physically and emotionally. Her teachers and social worker have just made a special chart/book for her with a list of emotions and choices for her to make that apply to every day. Often Ayla is very difficult to read/figure out. Proof of this happened today when her teacher thought she was clearly mad and she pointed that she was happy and wanted to play. Ayla is very verbal but holds back lots with other children and adults around. This will help them and us immensly!
Ayla just finished her dance class this week and if i can figure out how to load a video onto here, i will do so. (She's the one in the pink tutu/dress with brown running shoes and pig tails). She wants to take dance again after Christmas:)
We are doing okay. We continue to learn much on about the story we are written into. We are thankful for this story and although much pain and sadness has happened these last 2 years, we would not change any of it b/c God works in more awesome ways that we could ever dream.
Ryan is not working and hasn't been for a while...basically since my last update. He's trying like crazy and had many connections made, we are just waiting and praying that we see what God's next step for us is...whatever it may be. We would appreciate prayer for this if you have a moment to spare. Thank you so very much!
Merry Christmas to you all! I hope you all enjoy your time celebrating this special time of year!
Lacy
PS, i couldn't load the video but i included some pics.
I think the last time i wrote you all it was before Halloween! Time flies when you are...um...alive i guess:)
Ayla has been sick for over 2 years now. This time 2 years ago we were amping up to take our girl in for a bone marrow draw to check for cancer. Many tests, surgeries, pain, tears, hopelessness, breaks (heart and bones), AND MIRACLES have happens since the beginning. We are here to say that God works in many amazing ways and we are so thankful for His promises.
Since i last wrote Ayla has had 2 more treatments (one of which warranted an infectious disease control room) and a Rhuematology appointment. Along with many other exciting things.
In November we had a 'possible' secondary exposure to chicken pox with the kids, which was why were were put in a "control" room for her treatment...it was rather boring b/c we (all of us) were confined to the room which means...take a deep breath...NO PLAY ROOM FOR THE KIDS. (Windsor Hosp has a good play room) Niether of the kids are vaccinated against it which isn't a big deal in itself, but b/c of the medications (immune supressents double duty with the new drug) it makes it pretty dangerous for Ayla to get it. It would warrant a 5 day hospital stay with immunoglobulin infusions. Praise the Lord they didn't get it:) (Truly an answer to prayer). Hopefully someday it will be safe for them to get it and we can get it over with!
We saw the Rhuem in London mid november. Ayla has grown a lot taller and heavier. So i think she's putting many minds at ease of the possible inhibiting of bone (limbs actually) growth. Her doc is happy to see the weight/height that she's gaining and how much happier she seems. She didn't notice any change in her Eosinophilac Facciitis, which i think she was hoping to see after 3 treatments. So we have 2 more to go (possibly 3) and they will reassess. This doctor is going on mat leave, so i'm really praying that we don't have to see someone new and have her assessment done by them! They are going to try and get us in to see the lead Rhuematologist at Sick Kids in Toronto for March (after her 6/7 treatment). We have seen him a couple times before, so i would feel better him seeing her than someone coming in clueless. We shall see. After the 6/7 treatment and assessment they will determine whether this experimental drug is working or not. If not, she will stop getting the infusions and we'll just continue as we have been with her home injections. If it does....then she will continue. Ayla's doctor shared this with us: at a rhuematology conference not long ago, Ayla's doctor met another doctor who had a patient (9 year old girl) that has EF, just like Ayla! It didn't deteriorate her as quickly and as powerfully as it did Ayla, but after 2 years of being on immunosupressants HER DISEASE DISAPPEARED! POOF! GONE WITHOUT A TRACE! It placed hope in our doctor about Ayla's situation, someday she may be perfectly well without a trace of this disease this side of Heaven.
We also have a Bone Mineral Density scheduled for March to follow up on the 3 broken legs and will meet with the endocrinologist shortly after.
The most recent treatment Ayla had this past friday. IT WENT AWESOME. You all know, Ayla has had a very difficult time (as well as many nurses) getting needles of anykind into her veins b/c of her disease. She has had much emotional trauma b/c of this. This past friday, PRAISE GOD, the IV went in perfectly! She didn't even shed a tear! I am pretty sure that is the first time ever (including almost all home injections) she has not cried for a needle AFTER OVER 2 YEARS! She even went and brought the nurse who did it a reindeer candy cane after, so she wasn't even mad at her:) That is a miracle in and of itself! Another wonderful thing that happened that day, was that their was an 11 year old girl, who saved her allowance all this year (and ask for donations from family) and donated $750 worth of toys for the kids admitted or in for treatments. So Ayla and Ezra got to pick something and they made little cards for whoever this kind little girl was:)
Ayla is doing very well physically and emotionally. Her teachers and social worker have just made a special chart/book for her with a list of emotions and choices for her to make that apply to every day. Often Ayla is very difficult to read/figure out. Proof of this happened today when her teacher thought she was clearly mad and she pointed that she was happy and wanted to play. Ayla is very verbal but holds back lots with other children and adults around. This will help them and us immensly!
Ayla just finished her dance class this week and if i can figure out how to load a video onto here, i will do so. (She's the one in the pink tutu/dress with brown running shoes and pig tails). She wants to take dance again after Christmas:)
We are doing okay. We continue to learn much on about the story we are written into. We are thankful for this story and although much pain and sadness has happened these last 2 years, we would not change any of it b/c God works in more awesome ways that we could ever dream.
Ryan is not working and hasn't been for a while...basically since my last update. He's trying like crazy and had many connections made, we are just waiting and praying that we see what God's next step for us is...whatever it may be. We would appreciate prayer for this if you have a moment to spare. Thank you so very much!
Merry Christmas to you all! I hope you all enjoy your time celebrating this special time of year!
Lacy
PS, i couldn't load the video but i included some pics.
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