3-30-10 ~ update about Rehab Center

So, today I called the Rehab Center to see if we could schedule a tour and assesment and also if Ayla would be able to stay with Ezra and I instead of the hospital floor (with round the clock nurses waking her every hour through the night).
They are more than willing to set up the orientation, but Ayla will have to stay on bed floor. It's not possible for them to allow Ayla to stay in the suite with Ezra and i. I am more than welcome to stay by bedside, but Ezra is not.
I told them, "that is a deal breaker for us. I can't leave either one of them alone, it's not an option, they are both too young."
So that is that...

This all happened after i talked to our PT here in Windsor. She thinks that Ayla could really use Bloorview. That she's expected Ayla to get a little further, even though she's doing better if she doesn't get to a point soon where she feels like Ayla is "making leaps and bounds" then she's not sure what to do. "It's easier to heal emotions with time but if she can't ever walk through a mall on her own then that's going to be terrible for her emotionally."
Every time i think about this i cry. I hate this...i hate it all. We can't take her there...but what if she doesn't get better if we stay here.

Thanks for your prayers.
Lacy

3-25-10-teleconference

So yesteday we had a teleconference with our PT, OT, and the support team at Bloorview REhab center.
It's all so very complicated and we keep feeling like we are going back and forth and aren't sure what to do. We thought we had decided, but some things changed. They said it might be possible to have Ezra there with Ayla and I (because Ryan will be away for work). We would have to pay about $25-$35/night for a family suite if Ezra were to stay...and they might be able to work it so Ayla would be able to stay in the fam suite with us rather than in a "hospital" room with me at bedside, since she isn't actually sick anymore.

That said, yes, it's exactly a hospital environment. A hospital bed floor and then phsyio is on a seperate floor, and then the family suites are in the upstairs on the building.
So now i'm trying to get a hold of the doctor and out PT for a couple more questions...like, do they feel like it's detrimental for her to be there in order to recover 100%?? I know that the DR. is worried the longer she takes to recover the less likely she will be able to recover fully....so here is what i feel: what if we stay here and she's disabled for the rest of her life all because we didn't want to put her and our family through the multiple transitions?? What if we go there and it's a total catastrophe for her and makes us broke in the process??

So we are still trying to figure it out. If we don't go now (in the next couple weeks) then she'd have to get another referral and wait if we decided at a later date to go.
On top of this, like i mentioned earlier, Ryan is going far away for work, about 6 hours away so he will be living there. I am so very worried about...so many things.

On top of that i have a small sugery coming up in April...HOW WILL THAT WORK WITH EVERYTHING?

I keep trying to remember, "Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and he will make your path straight". (1 John 5:11-12) but man...sometimes it's so hard...


Thanks for all your thoughts and prayers. I'm sorry to dump on you all. You are so generous with all your love and support. We are so thankful for you all.
God Bless you and yours.

3-24-10

Hi everyone!
Sorry we didn't send an update last week. Ayla didn't have OT or PT because of one person being sick and the other on vacation. So this week is extra busy.
Monday Ayla had OT. It actually went very well. Only a few cries when they were stretching her further that couldn't be done "in play." The OT says her range of motion and stiffness in her shoulders, elbows, wrists, trunk, fingers is so much better than when we last saw her over a week ago.
Tuesday (and tomorrow) we had PT. PT is much less fun for Ayla because that's the part that involves walking and standing. But even this week was better than ever. She still protested and the initial standing was hard, but once she got walking she did great! And even...was having fun...we think. You could tell she was holding back a smile. She walked about 20feet with no crying...usually 5 steps is traumatic. She walked to some half stairs (4 inche stairs, about 6 stairs) and climbed them with the PT supporting her and helping her rock her leg out (knees are locked b/c of magic legs). She did this twice:) She also slid down the stairs on her bum with me doing it next to her. Same thing...trying to hold back a smile. After that we played hide and seek with bikes! Ezra and Ayla each got their own trike (appropriately sized with straps that would hold Ayla's feet on the peddles). Ezra and i would go up ahead and hide and then Ayla, Ryan and the PT would come and find us. It was great fun. Ayla was pushing a little on the peddles with some help from Ryan behind. But she was even laughing and talking...which she never does with the PT!
The PT also brought in an assistant Phsyio to help. We are hoping that Ayla would get used to seeing her and we would be able to go more times a week. The APT can do the same things as a PT just doesn't have a license so does it under supervision.
The rehab place in Toronto has been in contact with our PT a few times. They have not yet contacted us. Thursday they arranged to have a phone conference with us, the PT, the OT, Dr., and Rehab intake while we are at the physio place here in Windsor. We are pretty well decided that we are not going to go. When thinking of all the transitions of everyone in this family (especially Ezra and Ayla), childcare for Ezra (i'm a stay at home mom and ryan works away monday-friday), and the mental state of Ayla right now (while she's finally enjoying herself and the people) we just can't picture starting over again. We have prayed and prayed and feel led that this is the right decision unless some circumstances change. We are fine with slow and steady if it's easier on her emotionally.

I guess that's all for now.
I'll let you all know what the outcome is thursday.

Thanks again for the continued love and support. We continue to be blessed in many ways.

Something cool to share...

Ayla has people all over the world praying for her. All over Canada, the US, and Europe...those are just that we know of:)
Today we got a cool story from a relative:
"Today we went to Sault Ste Marie to the Salvation Army church were we often go, But had not been there for a few weeks. I requesded prayer for Ayla. After church a lady came to me and said that she had been getting E-mails about Ayla from her friend out west. I could hardly believe what I was hearing from a lady that I hardly know. I guess we will never know this side of heaven how many peaple are praying for Ayla. ------ "

I just thought it was really cool how the prayer chain works and thought i would share. God is good and He is awesome:)

Lacy

So we are back from London.
The appt went fine. Nothing new really.
The Rhuem, intake person at Bloorview, and our PT have been in contact. The rhuematologist said she would suggest Ayla go there. They have an opening as early as next month. Bloorview also agrees it would be good for Ayla. They will be contacting us this week.
We spoke to the Rhuem about Ayla's emotional/mental difficulties and she agree's that it's not an easy decision whatever we decide to do, but can't really offer advice.
Again, they know nothing of this and have no idea what the recovery time is or if it will come, but they are hoping.
She told us that Ayla would have access to just about every kind of therapy there is while there. That said, only 1 parent can be there. And there is a commitment of 4weeks-3months and depending on how she's doing possibly longer. (If she's doing very well they will keep her and make even more progress). That means our family being apart for a very long time...with another young one at home, who's had mom around for his whole life.
There are so many other determining factors. I don't know how we are ever going to decide and be at peace with the decision. We are constantly praying for God's guidance and direction...but every time we turn around something pushes us back the opposite way...ugh
Ayla has been through so much already and has Post Traumatic Stress...

-this could totally make it worse. She could totally shut down for them or they could pull her out of her funk.
-she will be away from home with only mommy's attention for a very long time, a hard transition when we get home (is it worth ANOTHER change?)
-we have no child care for Ezra while i'm gone
-Ezra has been through so much as well...should we really be away for that long???
-is slow and easy better than quick and hard??

And there are a number of other factors. None of which seem to be swaying us one way or another.
Sorry this is all so very jumbled. I just have a mess going on in my head. On top of this Ayla is crying all day and waking at night due to the poop thing...it no longer hurts, but now she's scared. BECAUSE SHE NEEDS MORE TO BE AFRAID OF RIGHT?!?! Sorry for too much information.

Anyways, they are continuing to wean down her steroid meds and are hoping to see a difference in her fascia (skin tightness and stiffness) in the next couple of weeks. They are also putting out a world wide announcment on the Rhuematology forums hoping they can find another family to put us in contact with who has been through this with a young child. Right now they only know of 3 (including Ayla) from sickkids in Toronto.

That's all for now.

3-10-10

Last friday and this past monday Ayla had Occupational Therapy. They went okay. The OT said she could work on Ayla for hours. Ayla held up alright, losing it a few times, but not a mess of tears the entire time. Monday she even had a little fun the last few minutes playing playdough.
Today she had PT, i prayed right before we went in that God would help this to be a better day for her. It was pretty good. She protested of course but not a mess of screams the whole time. She even let the PT hold her for a bit without too much protest. She walked about 10 assisted steps with her magic legs on 4 times. She cried most of that time, but did pretty well. She also stood with her magic legs on with the PT and rolled a ball back and forth to Ezra. She kept saying "no" and swattign the ball away but we noticed that it kind of looked like in swatting it away she was pushing it back. Ryan wanted me to mention, he caught her grinning for just a second and then when she saw him, went back to a scowl. Little booger.
We also saw the behavioral consultant today, who happens to be retiring on friday...oh good another new person for Ayla to meet. Anyways, she gave us some tips on how we can help. She agree's that we do have to keep Ayla trusting us without reinforcing the thought that "i'm so sick i need mom and dad to help me with everything." Still respond to her, but to tell her she's is ok and we'll be right there, instead of rushing to her side. Which we try to do, but for so long she's been ill. So we will continue. She will realize that these things are fun and that mom and dad are right there and if it does hurt then we will help her. Also, making her do things. Instead of "Ayla, would you like to wear your magic legs?" "Ayla it's time to wear your magic legs, IT WILL BE FUN." And make it as much fun as we can even if she's not enjoying it at first, she will at some point. She also agree'd with what the PT said last week, Ayla is too smart for her own good. Bloorview Rehabilitation Center in Toronto was talked about today as well. We got their feelings and thoughts on it. So we are praying for the Lords direction in that.
This Friday we see Ayla's doctor in London. We are still continuing to wean down her meds and it's working fine. This may be too much, but Ayla is struggling to go poop now. It's an all day agony/battle for her. Yet another difficult thing for her to deal with.
This week has been a hard week for us because Ayla is disabled, but life goes on. So to take what God gives us and just keep going can be hard some days. God is good. We are so thankful for the people God has surrounded us with.

Lots of Love.
God Bless.
"Come to me, all you that are weary and are carrying heavy burdens, and i will give you rest." -Matthew 11:28


I also just wanted to add, this doesn't have anything to do with Ayla, but we know a lot of people fighting with cancer right now, if you could please take a moment to pray for them, God would love it (and we would too). Be a blessing.

Patience, Stamina, Determination...us and her:)

Today Ayla had physio. Friday she will have occupational therapy (arms/upper body). We had a little chat with the PT about Ayla after. She is so strong willed that it takes a lot of determination,patience, and stamina for all of us involved. Also, she said that Ayla is so smart. She uses the same intellectual techniques on her as she does most 4 year olds, which is so great, but it's another thing that works against her because she emotionally is still a 2 year old, so it's a battle in her mind.
She can't explain at all what this feels like. It's so rare that they just don't know. She imagines that when she stand on her feet that it feels like that tingly feeling you get when something falls asleep...but constant. That's all she can really think of.
She will stand up straight and take steps with the PT only gently touching her to help her rock back and forth to shift weight, but as soon as we get our hands on her, she slumps forward or back and will not stand up straight for us.
All of her joints are slowly gaining back mobility. Her knees, elbows, hips and worlds better. And her ribs and spine are slowly getting their mobility/flexibility back.
We talked about what she needs emotionally and physically from us. How we have to believe that she can do this and not worry about her falling or being in pain (which they say she isn't, when she cries there are no tears). And even when things are not fun, tell her they are fun (because she knows they are, it's just her way of controlling something in a world where she can control nothing) and encourage her. When we do "fun" things with her, make it short, take a break, then do it again so she can get used to not having to be afraid and that there really is nothing to be afraid of.
It's such and emotional battle for her and for us. Does she really need to sit there and cry from me 24 hours a day, or is she really just trying to control me or see if i still believe that she's so sick she needs me all the time?? Only God knows...but i wish he would tell me.
Anyways, so i left today with lots of thoughts and things to pray about but not quite sure how to pray...

Thanks so much for all thoughts and prayers.

PS today we started decreasing Ayla meds again. This mornign she handled it fine. She could be quite achey for a few days though.

Better...

Ayla finally was able to keep stuff down around 6pm Friday night so we didnt have to go to the hospital. Thank God...i didn't want her to be butchered again for another IV. She was alright Saturday and Sunday and then Sunday night puked again (threw up her meds) at 6pm. Then again at 7.
She ate a little this morning and has so far kept everything down. Thanks for your prayers.