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 anymore!" 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!

Ayla's first 2 days of preschool went great!
Monday i stayed with her. I left a coupel times for short periods and she didn't make a fuss at all. She was very shy but enjoyed the kids and toys...and snack time:) Her favorite was when she got her little cubby with her name and a picture of a wagon she picked out. I think they are going to send me some pictures so i'll be sure to send one out when i get it.
Today was her first day without mama. This morning while getting dressed she kept saying "mama come preschool?" I said, "mama will bring you to preschool." I didn't want her to panic right off. When we got there we went in and she sat on the little kiddie couch and i told her i was going to come back later and her teachers would take care of her. While she wasn't happy, she didn't cry. Which for those of you who know my girl IS A MIRACLE IN AND OF ITSELF! Especially since she began to get sick. When i picked her up she was just coming in from playing on the playground where her teacher was pushing her around in a car:) She did a craft, did a lot of walking (holding hands and furniture), and actually had fun! She even waved and said, "see you monday," when i prompted her and she sounded excited when she said it! Praise God for all this!
We've got OT tomorrow afternoon, after that it will just be during or right after preschool.
Ayla is walking lots. Sometimes even with just holding with 1 hand. She truley is doing fantastic. She wants to walk everywhere now. She fell a bit today, not bad...but it scared her a little. She's okay now though, it didn't phase her at all.
Ayla has a horrible bout of thrush (yeast) in her mouth from her steroids. After trying to treat it naturally for a few days we went to the doc yesterday. Hopefully it will be gone soon.
God is good:)
This week has been very hectic and stressful and it's only Wednesday.
Ezra is struggling very much. I think he's missing Daddy. Hopefully with Ayla in preschool the 1-1 with me will help. Next tuesday our little man will be 5!!!
...what i would give for a full nights sleep and a massage! God Bless you all and lots of love to you!

Lacy

Cruising Ayla:)

Miracle Girl:)

This week has gone pretty well. I had surgery Monday and was blessed to have my inlaws here to help until yesterday. I'm feeling almost normal:)
Weeks are very busy will all the running around but everyone is doing good. Tuesday my mother in law was able to come with us to phsyio. It was really nice to have her there and have her see how much progress Ayla is making and though it's not fun (always a few minutes of tears) it's good. That day Ayla walked with a walker and just holding fingers for confidence, not for strength or anything else, just to know we were there. She was doing it all on her own! Last week it was suggested that Ayla mgiht be able to take a handheld walker home this week...tuesday the PT said, "she's beyond that already, she doens't need it." CAN YOU BELIEVE THAT?!?! PRAISE GOD!
There is still a lot of work that has to be done. The way the PT put it was it's too much little stuff to try and fit into a couple of hours a week. One major thing is that we have to build up her strength and range in her arms, wrists, and hands...basically whole upper body. Right now, if she fell, she'd go down like a plank...flat on her face. So my instructions are "DO NOT LET HER FALL." No pressure right...So we are supposed to allow her to take a few steps at a time with no hands, stay far enough away so she's walking (not reaching), but close enough to catch her if she falls. Easy enough right??? Or another example, if she was sitting and leaned a little too far to one side, she would fall because her reflexes and strength aren't where they should be. But it's all coming along:)
She's enjoying walking and even stood up a few times this week (from her chair) to push her shopping cart...when we weren't in the room! For so long now we just put her somewhere...and she stays. She can't move and hasn't even had the desire to...well it's coming back and we are in trouble! The PT said today that in the next few weeks Ayla will get "dangerous" as she's trying new things and desiring to do more and more...so pray that we can keep up with her and that she doesn't *gulp* fall.
Today we had her intake appointment for preschool. That's right...Ayla will be starting preschool on Monday morning. It will be twice a week for 3 hours in the morning. With this they are hoping that she catches on quickly to the other children that are mobile and also that she would be a good example for those children who are speech delayed (assuming she will talk...she's so shy). The PT and OT will come in and work with her while she's there and then meet with me after preschool to show me what i can be doing at home. I am going to sit in the first day or 2, until she's used to the people and place (it's the same place we have phsyio 3x per week, but a different room and people). Most of the other children in her class are special needs as well...if not all. Today we went and picked out a big girl back pack for preschool...trying to get her excited. I just pray that God can be with her and comfort her and keep her safe...while i'm not there. Although it will be nice to have some 1-1 time with Ezra:)
That's our week in a nutshell! Praise God for His plan...i was thinking today about what a miracle this all has been. As long as the last 7 months have been, i'm so grateful for this day...and more to come.
Thanks for your prayers and love and God Bless you all!
Lacy

Update 4-15-10

So i wrote out this whole update and then my computer restarted on it's own and the update is gone! Grrrr computers!
So Ayla did okay at phsyio this week. There was a lot more protest than there has been the last few weeks and i am trying to figure out why. I think it's because they are pushing her a bit further tryign to see what she can do and convince her that she CAN do it.

On Tuesday she took 40 steps with a hand walker, 4 sets of 10:) She was pretty tired after but we were so proud of her! She can stand on her own for a few seconds and for a few mintues with her magic legs now. She actually wants to stand and play more and more so i have to figure out ways to incorporate that at home while still allowing her to be independent.

There was talk about preschool on tuesday with the PT. She said it might be good because it would allow Ayla more therapy while not really "knowing" it. The preschool is there and the therapist will either incorporate what she needs to do into class play or they will take her out 1-1. They have openings mon,wed,fri mornings but that makes me panic a bit leaving her for that often right off. She hasn't been away from mom or dad (with the exception of some close friends) in the last 6/7 months. We went and checked out the preschool yesterday ( a different time than she'd be in) and it was good. There were even a couple kids from nursery and sunday school from our church there! Next thursday we go in for intake. They also said that the first few times i'm more than welcome to come with her until she gets used to the people and place. It's substidized so it will be $9/day for her to be there.

I wish Ryan was here to do all this with us, but that's the way it is i guess.

All in all we are doing pretty well. I have surgery on Monday so Ryan is taking that day off and my inlaws are coming down to help with the kids after he leaves for work that night. Ezra is struggling a bit, but okay.

Thanks everyone and God Bless!
Lacy

Scripture a friend sent me this week:
John 14: 27 "I am leaving you with a gift - peace of mind and heart. And the peace I give is a gift the world cannot give. So don't be troubled or afraid"

Stronger...

Ayla did really well at phsyio this week. She missed a day because she was pretty sick. They opened a new facility and it's very nice. They have a little "ballet" room with mirrors and that little dance bar (very low for little ones). Ayla could reach up to it from a chair (for her arms this is sooo great, come a long way) and with a bit of help pulled herself up and stood for a couple seconds WITH NO MAGIC LEGS AND NO HELP FROM ANYONE. The PT and OT were there and we were all cheering for her! She even held her bar and took some side ways steps with the reassurance of my hand on her back. This week she also peddled the trike all by herself! Just a little rock back to get started and she was off on her own:) Ryan's parents got her a little trike with a handle on the back so we can push her, now she can ride bikes with the kids outside. She is also becoming very adament at times that she must walk by herself and today twice while sitting on a step tried to get up, i'm going to have to watch her now we she doesn't have any falls while getting more brave. We have to work on some stretching of her ankles. The PT said she's pretty sure she grew and her muscles are just trying to catch up to her bones. The OT is having us work on her hands and thumbs (in the way that you make a 2,3,4).
We are thankful that God is making our little girl stronger...and us stronger too. Today someone in our small group said that Ayla is teaching us all something...and she certainly is. Gods goodness in all things. We are so thankful for her.


PS
There is a family in the same town we live in that have a little boy with a similar disease as Ayla, except it's in his esophogus, so he can't eat anything other than hypoallergenic formula. He and his family are moving to Edmonton to have some sugeries done to try and help him. He is only 10 months old. We dont know them, but if you could say a spare prayer for this little boy that would be so great:) God Bless you all.

at peace

Hello all,
I was sitting quietly trying to hear if i was missing something, then a verse someone wrote me the other day came into my head, i think the Lord placed it there, "Be still and know that I am God."As i thought, i thought....ok, i'm still...i know you are God....now what? Then i thought, BE STILL. Be still in that we can be still (stay here) and know that God is God and he doesn't need Bloorview to make Ayla walk again...He is the mighty one. He doesn't need us to put hope in some institution for her to walk again...He just needs us to put our hope in him. I know he uses those things as tools for him but i have just been searching and getting so confused, this feels clear to me...and right. I know it may sound too "literal" to some...but in my heart and head i truly felt that was what it was supposed to mean in that moment and Ryan does too. So we finally felt at peace.
It's just so hard when you think you have it all figured out and then something happens that makes you go "was I even listening at all??? I thought I was..."

The other day i called the Social worker at Bloorview. She and our PT had mentioned it would be good to get Ayla assessed by a different PT, just to compare notes. So i spoke to the Social Worker and asked if she could set this up, she's going to try. I think that with this, it will give us more info on if she needs more therapy or if 3 times a week is sufficient (with me doing stuff at home). That said, if all she needs is more therapy then we are going to see if somehow we can either pay for more at John Mcgivney center for children (if OHIP won't cover) or find someone to do it in home (a few people/organizations came to mind that might be able to help.) I called and left a message with our PT to see what she thought. If it's possible for us to pay for more therapy there or maybe a student/unlicensed PT would be able to do it there or in home. These are just some things that came to mind recently.
Also, this put me at peace as well. I thought of this yesterday too. I remembered how miserable she was a few months ago...even a month ago. All days were bad, with maybe a few short minutes of fun and happiness. Now...she's happy most days with a few minutes of "being 2." I thought God had taken away my happy little girl...instead he put her right back. I can't take that away again...b/c what if she doesn't get it back? She finally has a DESIRE to do things; like walk and ride bikes. I was waiting so long for the desire to come back...which i thought it never would. But it is...
So wouldn't now that she's happy and is desiring to be mobile again, she progress more quickly?? Anyways, i could be way off...but this has been my thought process.
If God decides to open or close more doors for us, then we'll take it as it comes. I'm tired of the rollercoaster but if it's what He wants...it's what He wants. I guess I shouldn't ever be surprised that i dont have it all figured out.

Just in the last few days since all this happened. She has improved, in my eyes, even more. It used to be a fight to get her to walk 5 steps, yesterday i bet she walked around 100, With her magic legs and us rocking her back and forth for balance (she's not strong enough to do the weight shift). SHE FINALLY HAS A DESIRE TO WALK AGAIN...SO I DON'T THINK IT WILL BE LONG. SHE'S A PRETTY "GOAL ORIENTED" (STRONG WILLED) LITTLE GIRL:) Even after the 100 steps, she wanted to put on Ezra's roller skates and skate around the driveway...so we did. We did about 3 laps and then i was too tired to hold her up anymore without a break:) Then we went in the back yard to play and she was sitting playing with a toy and she called "mom, stand up play!" So i grabbed her hands and she lifted herself up and i braced her and she stood and played for a good 5 minutes (which is very long for someone who didn't even have her magic legs on and had already done so much)! Then she took a break and did it again. The last few days she wants to walk more than she has since November. Her PT's major worry was that if she's only getting a few minutes of standing/walking time per day, she can't build up her muscles, well i think she is now...she can even stand straight up and hold all of her weight with no magic legs. Today she wanted me to let go of her so she could walk...she's not that far yet where she won't fall, but just that she actually wants to do it! It is so amazing. I feel like God is showing us...something pretty awesome.

Anyways, that's the update for this past week.