Today we went to see the Rhuematologist in London for Ayla's check up.
She was presently surprised at how well she is doing. She had no idea that Ayla could even stand:)
All her bloodwork came back perfect, so her liver and everything is holding up fine.
As for her leg, doesn't seem to be an issue. Maybe there was a pulled or tight muscle from being so busy. The PT thought that's what it might be. So we just have to keep an eye on it. It's nothing they would be able to see with an xray, it would have to be an MRI...which she would have to be sedated for. It's better now...Lord willing, it will stay better:) One of her legs is bigger than the other, as in thicker...so it must be stronger than the other and the smaller one was the hurt one.
She's got some discoloration all over her torsoe, which is apparently scarring from being so swollen for so long, it should go away.
She's weaning off her steroird slowly and it's going well. It will be a while before she's off because it's very slow, but she is handling it fine. I never knew this before, but the steroid makes your bones weaker, so a bad fall wouldn't be good. Not only now because she isn't strong enough to brace herself, but because of lack of bone strength.
It's so funny because Ayla shuts down as soon as we get there. She won't speak or look at the doctor other than with a scowl. As soon as we are done and walking down the hall, she's all chatty cathy again and bubbly and wants to go play in the play room. We almost didn't get her to walk for the doctor, since she's so "strong willed". But she did, a few steps. Dr said, it's good that she's so strong willed because that's probably why she's doing so well. But we know that God made her strong willed and God is helping her do so well:)
The set backs are hard, like when she couldn't walk this week and we had no idea what was happening. So many things run through your mind trying to "figure it out". Only one person knows what's wrong and how to fix it...and it's not Ryan or I or the doctors. He must be saying to us all the time, "STOP TRYING TO FIGURE IT OUT, I KNOW WHAT I'M DOING!!!!"
Praise God for the progress and the set backs. Praise God for all the love and prayers from you all.
The kids and i are off the Florida this evening to spend a week with my mom and brother. We are excited to have some fun...all Ayla cares about is "pool florida?" Yes, there will be a pool, so she'll be happy:)
Thanks again and God bless you all!
Lacy
Saturday, May 22, 2010
Monday, May 17, 2010
walking Ayla5-17-10
Sorry i didn't send an update last week.
Last week Ayla took leaps and bounds. Monday she was only taking a few steps without holding on, by wednesday, she was taking about 5-10 steps...a little shakey but good. She was pushing her little shopping cart around the house like a maniac following me everywhere:) It was so good to see! Monday she walked from one end of the house to the other to come find me! It's the first time she has walked/moved to me since early december! Praise God! By friday in Owen Sound she was moving and groving everywhere! All over Ryan's little apartment without holding on. Wanting to "walt", as she says it. She would just come to you and say "hi mom. Bye" and walk to the door pretending she was going grocery shopping, then come back and say, "i back now." It was sooo sweet:)
Ryan had a great time with them on the weekend and said she was walking everywhere.
Falling is still an issue as her arms still aren't strong enough to brace for a front fall, so we continue to work on that here and at preschool.
So what a great update for last week!
This morning getting ready for preschool, she was pushing her little baby stroller walking all over the house. When i went to pick her up after preschool...she was sitting crying with the PT. Something is wrong. One of her legs/knees/something is in pain and she can't walk again. It's physically hurting her...not mental. the PT couldn't feel any difference in the legs, but it's hard for her to tell with Ayla crying no matter where she touches her just because she wants to be done. She suggested that i carry her for the next couple hours until we got home and then let her do something she normalls does at home and see if she actually does hurt or if it's just she didn't want to do anything for PT today. We've tried a few times and she can't move one leg. She's very upset beause she desperately wants to push her stroller and cart and stands to do it and cries and can't move. Hopefully it's just soreness from working to hard and will be back to working order again soon, please pray.
Also, today i took Ayla to the dentist. First time she's been. Her teeth have been looking "clear" since the meds. Her teeth are in very rough shapes due to many things; meds, calcium depletion, etc. She is going to need surgery to have caps put on and some other minor things done. The dentist tried to glorify it by saying "they have this really cool program at the hospital called "Surgical Safari" that you can go and do a tour and meet the child life people...." To which i responded...yeah, we know all the child life people and the floor pretty well unfortunately." It's a day in, under anestetic, home later in the day. It won't happen until July/August.
I feel so bad for my girl...i am so happy to see how God has healed her and i don't have a clue why this is happening and she has to endure some more.
With lots of love and thanks,
Lacy
God Bless
Last week Ayla took leaps and bounds. Monday she was only taking a few steps without holding on, by wednesday, she was taking about 5-10 steps...a little shakey but good. She was pushing her little shopping cart around the house like a maniac following me everywhere:) It was so good to see! Monday she walked from one end of the house to the other to come find me! It's the first time she has walked/moved to me since early december! Praise God! By friday in Owen Sound she was moving and groving everywhere! All over Ryan's little apartment without holding on. Wanting to "walt", as she says it. She would just come to you and say "hi mom. Bye" and walk to the door pretending she was going grocery shopping, then come back and say, "i back now." It was sooo sweet:)
Ryan had a great time with them on the weekend and said she was walking everywhere.
Falling is still an issue as her arms still aren't strong enough to brace for a front fall, so we continue to work on that here and at preschool.
So what a great update for last week!
This morning getting ready for preschool, she was pushing her little baby stroller walking all over the house. When i went to pick her up after preschool...she was sitting crying with the PT. Something is wrong. One of her legs/knees/something is in pain and she can't walk again. It's physically hurting her...not mental. the PT couldn't feel any difference in the legs, but it's hard for her to tell with Ayla crying no matter where she touches her just because she wants to be done. She suggested that i carry her for the next couple hours until we got home and then let her do something she normalls does at home and see if she actually does hurt or if it's just she didn't want to do anything for PT today. We've tried a few times and she can't move one leg. She's very upset beause she desperately wants to push her stroller and cart and stands to do it and cries and can't move. Hopefully it's just soreness from working to hard and will be back to working order again soon, please pray.
Also, today i took Ayla to the dentist. First time she's been. Her teeth have been looking "clear" since the meds. Her teeth are in very rough shapes due to many things; meds, calcium depletion, etc. She is going to need surgery to have caps put on and some other minor things done. The dentist tried to glorify it by saying "they have this really cool program at the hospital called "Surgical Safari" that you can go and do a tour and meet the child life people...." To which i responded...yeah, we know all the child life people and the floor pretty well unfortunately." It's a day in, under anestetic, home later in the day. It won't happen until July/August.
I feel so bad for my girl...i am so happy to see how God has healed her and i don't have a clue why this is happening and she has to endure some more.
With lots of love and thanks,
Lacy
God Bless
Thursday, May 6, 2010
Splashing in puddles...
Hi everyone!
Preschool went okay this week. She was more upset this week when i left than last, because i thinks he realizes now that it's not just a one time deal. She's bonded with one of the teachers, which is good. They said she's all teary until they start crafts and then Ayla feels much better as long as she's making it "for mommy." I got a beautiful mothers day card today...come to think of it, it's the first craft i think she's done where i haven't done it with her or at least known about it! I'll keep it forever:)
She was taken out each day this week for 1-1 therapy, one day for OT and one for PT. I feel kind of in the dark because i haven't actually spoken with the therapist since Ayla started preschool. I'm going to be giving them a call and see if there's anythign she's improved greatly with or anything we need to work on.
I just thought i'd send a picture of Ayla standing! She can stand unassisted for a little bit now and i even sneakily got her to take about 2 steps without holding on the other day and once again today, but i don't think she realizes she did it on her own:) It's not the greatest pic of my girl b/c her brother was spraying her with water, but it's still pretty cute:)
There's also a picture of Ayla from Ezra's birthday last weekend. A few of the GIRLS (yes that's right, the girls) were splashing in the big puddles and Ayla loved it so much. She spent a very long time in those puddles with me, Ryan, and Nana. One of her friends (she's 4) said, "i remember when i could touch and hold hands with Ayla and she liked it and then she was sick and i couldn't because it hurt her too much. Guess what?! I can't touch her and hold hands again and it doesn't hurt her anym
ore!" It almost made me cry and brings tears to my eyes now. You don't really realize how much other people notice, especially a 4 year old. So we just said, "I know it's a miracle isn't it?!"
And yes, it certainly is. Our little miracle girl.
I'm so glad i can share all the good news with you all! God Bless!
Lacy
Preschool went okay this week. She was more upset this week when i left than last, because i thinks he realizes now that it's not just a one time deal. She's bonded with one of the teachers, which is good. They said she's all teary until they start crafts and then Ayla feels much better as long as she's making it "for mommy." I got a beautiful mothers day card today...come to think of it, it's the first craft i think she's done where i haven't done it with her or at least known about it! I'll keep it forever:)
She was taken out each day this week for 1-1 therapy, one day for OT and one for PT. I feel kind of in the dark because i haven't actually spoken with the therapist since Ayla started preschool. I'm going to be giving them a call and see if there's anythign she's improved greatly with or anything we need to work on.
I just thought i'd send a picture of Ayla standing! She can stand unassisted for a little bit now and i even sneakily got her to take about 2 steps without holding on the other day and once again today, but i don't think she realizes she did it on her own:) It's not the greatest pic of my girl b/c her brother was spraying her with water, but it's still pretty cute:)
There's also a picture of Ayla from Ezra's birthday last weekend. A few of the GIRLS (yes that's right, the girls) were splashing in the big puddles and Ayla loved it so much. She spent a very long time in those puddles with me, Ryan, and Nana. One of her friends (she's 4) said, "i remember when i could touch and hold hands with Ayla and she liked it and then she was sick and i couldn't because it hurt her too much. Guess what?! I can't touch her and hold hands again and it doesn't hurt her anym
ore!" It almost made me cry and brings tears to my eyes now. You don't really realize how much other people notice, especially a 4 year old. So we just said, "I know it's a miracle isn't it?!"And yes, it certainly is. Our little miracle girl.
I'm so glad i can share all the good news with you all! God Bless!
Lacy
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