Good afternoon.
I'm so thankful for all the encouraging responses we got from the update and pics i sent of Ayla dancing! She is really having fun with it and loves it very much. She had dance again last night and was all smiles.
This update i'm going to try and keep brief. We have had a busy day.
Ayla had her first treatment of the experiemental medication today. We arrived at the hospital and 8am this morning and didn't leave until 2. The medication itself only ran for 2 hours but they had a lot of trouble getting an IV in...once again. That was the worst part of the day. They ended up having to put it in one wrist and then board it and tape it so she had no use of that hand, which was frustrating when she was trying to play and distract herself. But it is what it is...
They gave her some benadryl before the med to prevent any allergic reaction and it made her tired and irritable while we were there. But for the most part it was okay.
They have been doing some social emotional work with her at school with a social worker so she can process how she feels about the new meds and i think she's handling it better emotionally than i thought she would. We will keep praying...God will help her...and us. The child life people at the hospital are amazing also. Lots of new toys and things to distract her. They also had a therapy dog come in, which Ezra really liked. Ayla was so tired at that point she couldn't really enjoy it.
We were also very blessed by my mother in laws' bible study group. One of the women in her group has cancer and during one of her treatment she was thinking about Ayla and suggested that they all get little toys and things for Ayla to do while she has hers. So Ayla spent much of the morning distracted by playing with new toys, coloring with new markers, and making crafts in her room. This was such a great thing...when my mother in law told me about it, i got a little teary. For a woman to be thinking of our little girl in the midsty of her own trials...THANK YOU:) God is good.
All in all the treatment went well. The nurses and staff were all great. We are very thankful for the many blessings that today provided, along with a hope for healing for our girl.
That said, i have a secret to share with you.
Last year a friend of ours that has a chronically ill child suggested a wish from Make a Wish for Ayla. For this the parents have to "okay" it and then the medical staff decide whether or not she qualifies for a wish. I sat with the paper work in my bible from last summer (the summer of breaks) until after Christmas...and finally i decided to send it in.
In March we found out that she got a wish. It was kind of bitter sweet. It was almost admitting that she was ever 'THAT' sick...but such a huge blessing.
So tomorrow, we are going on our make a wish trip to Give Kids the World in Disney World. Everything is all taken care of for us and all we have to do is relax and enjoy...I DON'T EVEN HAVE TO COOK THE WHOLE TIME WE WE ARE THERE!!!
Part of the reason we haven't said anything was b/c we are keeping it all a secret from the kids. They have no idea that at 8:30am tomorrow a limo is going to pick us up, take us to the airport and where we are going. Ryan and i keep finding out little bits and pieces about the trip and are getting more excited too. Like the limo taking us to and from the airport!! We only foudn that out a few weeks ago.
We feel truley blessed and overwhelmed...by all the things God has put in our path to give us rest sometimes.
Anyways, that's my quick update...i will let you know how the trip goes!
We love you all and value all your thoughts and prayers very deeply...
Lacy
PS, on a side note. Ryan is really struggling with work. If you think of him...please say a prayer. Thank you again...
Friday, September 30, 2011
Thursday, September 22, 2011
Thank you Lord for miracles!
This is just a quick update with Ayla. More of a praise i'd like to share with you all.
We decided to put Ayla in a parks and rec dance class b/c she'd been talking about some other girls at school doing dance and that she'd like to try it...
Here are some pictures. Words can hardly explain how i felt sitting there with tears of joy in my eyes for those 30 minutes...thank you Lord for your miracles.
(She's the one with the little pink outfit/yellow undershirt/leggings:) )
^These are just a few pict
ures of the almost 100 that i took*
We decided to put Ayla in a parks and rec dance class b/c she'd been talking about some other girls at school doing dance and that she'd like to try it...
Here are some pictures. Words can hardly explain how i felt sitting there with tears of joy in my eyes for those 30 minutes...thank you Lord for your miracles.
(She's the one with the little pink outfit/yellow undershirt/leggings:) )
^These are just a few pict
ures of the almost 100 that i took*Monday, September 5, 2011
Ayla update 9-4-11
Wow! Labour Day! I can hardly believe it's almost fall! Although Friday and Saturday were quite hot, labor day (excuse the inconsitent spelling of that...I'm American and i just don't understand the "u"...but i try!) weekend reminds me that fall is not far off. Cooler weather and less mosquito's!
I have a surprise for most of you! It's been so long since i sent an update, guess what?!?! RYAN IS HOME! Not home for a visit, BUT ACTUALLY HOME WITH WORK HERE IN WINDSOR! Thank you Lord! It's about a month long project, but hopefully it will turn into more. And actually being here will make it a bit easier to hit up some people personally for work. He got home last Wednesday and starts work Tuesday. It will be so strange to have him home for dinner and bedtime every night! We are so very thankful for all of your prayers.
I was just sitting here reading a devotion about "looking for God." How many things go by that go unnoticed because we just keep pushing ahead...wanting to get to what's next instead of what is now. It made me think about Ayla...of course.
Just tonight we were going through some of her old clothes to pass on to another little girl. She was helping. She pulled out these little brown suede boots someone had given to us when Ayla was tiny, at the time they were much too big for her so we put them away for another time. I had sometimes thought about the boots and how i coudln't wait for her to be able to wear them! But today when she pulled them out, i felt sad. She never did wear those cute little boots...when they fit her...she couldn't walk...she was far to sick to even stand...
Funny how those little things can set us back into heartache that seems so fresh.
That said, how many things do i over look in a given day just because life happens? Ayla running in the backyard, kicking a soccer ball, swimming, jumping, riding a trike, all these things that we kept waiting for to happen sometimes get overlooked or don't seem as "miracle worthy" as we once felt like they were.
So as i sit looking at those silly boots, I am thankful for the many miracles God has done in Ayla's life...our family's life.
We have decided that we are going to try the trial medication with Ayla. We have prayed a lot and talked to her old doctor and her whole team at the John McGivney Center here in Windsor and we are going to try it. There are some risks involved, some big, some small. But if anything bad happens, we will stop right away. Her medication will be by infusion at the hospital 3 times in the first 6 weeks and then 1 time every 4 weeks after that. The IV will likely run 2-3 hours. She will have to have a chest xray and a TB test before she can have the drug, she's scheduled to get those on the 14th. So she will begin shortly after that.
Part of the reason we decided to do this was because, the doctors really think this is the only shot Ayla has at being "normal". This is really all they have left. And when i ask, "well how far away from normal is she?" It's evident to them, that her skin, thought developmentally she's doing well, will never get less tight/stiff/thick without more help. And if we leave her like this for longer, it's less likely that any medication will ever work. Also, because of the way that her skin is, if we leave it, it could possibly inhibit growth of her limbs (limbs being significantly longer/shorter than others), muscles, and cause constant contractures of her joints.
So while now everything seems so "normal"...we have to think long term.
Someone said to me, "Well, think about when she's a teenager. Would she be more likely to say, "Why did you make me do those IV's? They hurt me!" or "If there was a chance a medicine would have made me better, why did you do it?" TRY THINKING ABOUT THAT QUESTION!
Anyway, I've been in contact with her social worker and she's going to be in touch with the child life people at the hospital and try and set it up so that she has something to look forward to while she's there. A special craft or a new movie, something of that nature. The social worker will also work with Ayla and I doing play therapy so we can see how it's effecting Ayla social-emotionally, which is really what i'm concerned about the most.
Maybe this is the next miracle God has for Ayla...maybe not. I'm sure we will learn something and grow somehow...no matter what, as long as we trust Him and if we continue to stop and look at the "small miracles" He does every single day.
Lots of love and God Bless!
I hope you all had a great labour/labor day weekend!
Lacy
I have a surprise for most of you! It's been so long since i sent an update, guess what?!?! RYAN IS HOME! Not home for a visit, BUT ACTUALLY HOME WITH WORK HERE IN WINDSOR! Thank you Lord! It's about a month long project, but hopefully it will turn into more. And actually being here will make it a bit easier to hit up some people personally for work. He got home last Wednesday and starts work Tuesday. It will be so strange to have him home for dinner and bedtime every night! We are so very thankful for all of your prayers.
I was just sitting here reading a devotion about "looking for God." How many things go by that go unnoticed because we just keep pushing ahead...wanting to get to what's next instead of what is now. It made me think about Ayla...of course.
Just tonight we were going through some of her old clothes to pass on to another little girl. She was helping. She pulled out these little brown suede boots someone had given to us when Ayla was tiny, at the time they were much too big for her so we put them away for another time. I had sometimes thought about the boots and how i coudln't wait for her to be able to wear them! But today when she pulled them out, i felt sad. She never did wear those cute little boots...when they fit her...she couldn't walk...she was far to sick to even stand...
Funny how those little things can set us back into heartache that seems so fresh.
That said, how many things do i over look in a given day just because life happens? Ayla running in the backyard, kicking a soccer ball, swimming, jumping, riding a trike, all these things that we kept waiting for to happen sometimes get overlooked or don't seem as "miracle worthy" as we once felt like they were.
So as i sit looking at those silly boots, I am thankful for the many miracles God has done in Ayla's life...our family's life.
We have decided that we are going to try the trial medication with Ayla. We have prayed a lot and talked to her old doctor and her whole team at the John McGivney Center here in Windsor and we are going to try it. There are some risks involved, some big, some small. But if anything bad happens, we will stop right away. Her medication will be by infusion at the hospital 3 times in the first 6 weeks and then 1 time every 4 weeks after that. The IV will likely run 2-3 hours. She will have to have a chest xray and a TB test before she can have the drug, she's scheduled to get those on the 14th. So she will begin shortly after that.
Part of the reason we decided to do this was because, the doctors really think this is the only shot Ayla has at being "normal". This is really all they have left. And when i ask, "well how far away from normal is she?" It's evident to them, that her skin, thought developmentally she's doing well, will never get less tight/stiff/thick without more help. And if we leave her like this for longer, it's less likely that any medication will ever work. Also, because of the way that her skin is, if we leave it, it could possibly inhibit growth of her limbs (limbs being significantly longer/shorter than others), muscles, and cause constant contractures of her joints.
So while now everything seems so "normal"...we have to think long term.
Someone said to me, "Well, think about when she's a teenager. Would she be more likely to say, "Why did you make me do those IV's? They hurt me!" or "If there was a chance a medicine would have made me better, why did you do it?" TRY THINKING ABOUT THAT QUESTION!
Anyway, I've been in contact with her social worker and she's going to be in touch with the child life people at the hospital and try and set it up so that she has something to look forward to while she's there. A special craft or a new movie, something of that nature. The social worker will also work with Ayla and I doing play therapy so we can see how it's effecting Ayla social-emotionally, which is really what i'm concerned about the most.
Maybe this is the next miracle God has for Ayla...maybe not. I'm sure we will learn something and grow somehow...no matter what, as long as we trust Him and if we continue to stop and look at the "small miracles" He does every single day.
Lots of love and God Bless!
I hope you all had a great labour/labor day weekend!
Lacy
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