Ayla 12-17

Morning everyone!
Today we are off to London to see Ayla's Rhuematologist and the new one that will start in the New Year. We are thankful for a new set of eyes on Ayla's case and also that the old one will continue following Ayla from Sick Kids in Toronto. Today we will talk more about the trial medication they wanted to look into for Ayla and also see if the injections we have been giving are helping. I'm writing now b/c i won't have access to this email while we are away for the holidays. I will write with an update when we are back after Christmas:)
She is going to London without the MRI that they requisitioned over a month and half ago. After many phone calls to the Rhuem, Pediatrician, and hospital radiology, they finally JUST connected on Wedensday late afternoon. I'm sure they will call and want her in next week while we are away in New York for my family Christmas. Lord will we will not be in any hospital for anything after the New Year. If they could wait this long, another little while isn't going to hurt anything. Obviously no one is in any hurry. I'm a bit frustrated, but it's okay.
Ayla is doing well phsyically. She is climbing on and off beds and couches and such. Which makes way more falls happen, but she's holding together pretty well. Thank God she's off those steroids! She's eating lots and hopefully today we can see a tiny bit of weight gain.
People at preschool/therapy and at church all have been commenting that she seems so much more happy. Whether that's because she's feeling better or growing up we can't be sure. But we are sure that we are thankful.
This Christmas we are thankful that we are not in a hospital. We are thankful that our girl is happy. We are thankful that Ryan is home with us. We are thankful for friends and family. We are thankful for prayers all over the world. We are thankful for all God has taught us through the suffering of our little girl. We are thankful that God sent is only begotten Son for us so that we shall not perish but have enternal life. Happy birthday Jesus and thank You so much.
Merry Christmas to you all!
God Bless!
Lacy

12-6-10

Things have been so busy! I recieved a couple emails about updates for Ayla, so here we are:)
Ayla is doing fine. Weekly injections started off easily and seem to be getting harder for her. She gets more upset each time. But at least it's not daily. I'm not sure if they are making any difference. Next friday we will see her Rhuem. in London and she will have more info for us about the other trial medication they want to try, which would be a monthly injection at the doctor on top of the weekly.
She has to have an MRI done by next friday. We are still waiting to hear. I called today and they were "working on getting it scheduled." Well it's been over a month and it has to be done in less than two weeks. Which doesn't seem like a big deal but because she has to be sedated we will have to go in for an Anastetia Consult i'm sure before the actually MRI. If no one calls by tomorrow i'm going to have to start knocking some heads together...hehe:) I'm sure the radiologist is looking at her chart thinking to himself "oh no, this kid again. The last one took 4 hours b/c her sedative wore off...ugh." Anyways, hopefully that will go smoothly and we will get some good results. I'm not quite sure what they are looking for yet...any improvment i guess that they can't see on the outside.
She is still having massage done 1-2 times a week. Now they moved to hurt feet/ankles because she's tolerating it fine. She loves to lady that does it. She's super kind and for that we are thankful:)
Last week Ayla had some further allergy testing. 3 appointments with the results being "well we can't prove that she is or isn't allergic to corn." There isn't enough research on corn allergies for them to be able to tell an internal reation. She does have a slight external but it seems to be getting less and less, so hopefully she's becoming more tolerant. Corn is very difficult b/c anything you can think of basically has some component of corn. He told us to continue avoiding if we see a difference. So that we will.
I spoke with a Pediatric Nutritionist just over a week ago. She had some really great creative ideas to get Ayla to gain weight that avoid corn and her lactose intolerance. This with an iron supplement will hopefully help her gain some fat and muscle.
Ayla sang and rang bells for the childrens Christmas presentation at our church. She was so cute:) She had fun being up there. "Mommy, did you see me waving?" Also, yesterday at our small group Christmas lunch/dinner we acted out the nativity story. It was lots of fun. Ezra and I were wise men, Ayla was an angel, and Ryan was the star:) Ayla especially had fun dressing up and Ezra liked having "gold" as a gift for baby Jesus. (Thanks Stephanie for your "vision")
Ryan has been home from Owen Sound for just over a week now! It's been nice, but man, what a transition! We've gotten a few things done around the house that have been waiting. And i made a "honey do" list that will hopefully get done this winter:)
Ezra is doing okay. The transition to having Daddy home is hard for Ayla and Ezra. I don't think they realize that "tomorrow" (whatever day it may be) Daddy doesn't have to go away. I think they keep soaking it up in case it's over soon. Hopefully God will allow Ryan to be home working soon, but for now we will soak up what we can.
I guess that's all for now. I will send off and email when i find out about Ayla's MRI so people can be praying.
Thanks so much for your continued love and prayers over our family, especially our wee girl.
God Bless you all and your families!!!

Lacy

Ayla-11-18-10

Hi all! I was thinking today, "it's been a while since i've done an update." So here I am.
Last week i was very sick with strep throat. Thank the Lord that my inlaws were able to come down and help with the kids. I am not sure what i would have done...my father in law had the week off. Coincidence??? I think not:)
I am better now and thankful that no one else came down with it.
Last week we learned that we should be doing some breathing excersizes with Ayla. Her ribs are locked up and so she can't inflate her lungs very well. So we've been having some fun with horns and whistles and such:)
Monday Ayla was due for her bloodwork. It went horribly once again...i wonder if taking her blood will ever get easier? They asked, "how much longer does she have to do this?" My answer, "Um....probably forever." You should have seen the look on their faces, these poor ladies hate taking her blood just as much as i hate taking her in. Both arms and they got barely enough blood. I wish there was an easier way...
Tuesday Ayla had an appointment with the Naturopathic Doctor. She had a chance to go over some of Ayla's past bloodwork (i was finally able to get it to her) and Ayla's iron levels are really low. This may or may not be part of the reason she isn't gaining weight. Iron helps you absorb nutrients from food and if her are low, her body is just spitting stuff back out. She eats tons and doesn't gain. She gave us some sample liquid iron supplements to try and I have a good feeling about it.
This afternoon Ayla goes for her first massage appointment. A number of people thought it might be beneficial to her. There is a mother of a little girl that plays hockey with Ezra who is certified with pediatric massage, so she's going to see what she can do. I'm praying that Ayla will let her touch her...even just a little bit and hopefully build up. She is starting with one arm, so we can compare and see if there is any change after a few weeks.
We are still waiting to hear back when her MRI will be. It will be before December 17th b/c that's when we go to Children's Hospital in London for the results of it.
Sometimes i get concerned about how many times Ayla has been sedated. And how many times she has had the radiation from xrays, ultrasound, mri's, ctscans, and many other tests she's had. It usually isn't a blip on the radar, but sometimes...my heart and head get heavy with those thoughts. I know God has good plans for her, so i try and put those things out of my head and not worry and just TRUST.
Ayla is very much excited about Christmas this year...as are we all:) It will be a much happier time than last year....Praise God for that:)

Lacy

Ayla-"not perfect"

Praise God we are back from Sick Kids in Toronto! Ayla had 2 appointments on Monday. One with dermotology and one with the lead Rhuem and her following Rhuem. Then we spent the night at our special cousins (Thanks guys) and then a night in Sarnia with Ryan's parents. We are happy to be home and resting but had a nice time visiting...other than the hospital. But that was okay too...thank God:)

I was under the impression that Ayla was "back to normal" with her meds. But i was wrong. I didn't realize they would have a whole game plan when we got there. I just thought it was a follow up to see the progress she has made. That it was...but then more stuff too.

We saw the derm first. She was..."impressed" in a negative way with Ayla's skin and under laying of fat, fascia. She has never seen anything like this through a persons whole body, only in one or two limbs and in someone as young as Ayla. She could hardly believe that it was actually worst than it is now...but it was, much. She suggested a few things but wanted us to meet with the Rhuem and then they would have a chat after and decide what the next step should be.

Then we saw her Rheumatologist and the Head Rhuematologist. They both were happy that she was moving around and had less joint stiffness, but still lots in their eyes. She's gained just over a pound back from her 5lb weight loss at Christmas last year when she was gravely ill and she has grown almost 2cm in the last year despite steroids. (Still at the very low end of the "percentile" scale, but some is better than none.) They want to change her weekly oral meds to a weekly injection. It usually works better for inflammation if it's done by injection. So hopefully that would help since she is still, in their words, "not perfect." Along with the injection they would like to try a different drug that's only been used for a disease like this a "few" times. Her words were, "not 10, not 50, not 100 and certainly not 1000's of times, but the few times it has been used it's shown success." This drug is one that she has to get approval from the govt for and see if we can get covered for since it's one we don't have coverage for otherwise. Apparently it will take her a while (maybe 1-2 months) to get that done so in the mean time we are praying that the present med by injection will cause major improvments. We will ask more about the side effects when we see her in December and see if it's worth it.

Also, she has requested a lower MRI for Ayla. She could do whole body but she should get what she needs by just doing lower legs. Ayla will have to be sedated for that. That will be done in the next month, before our next appt with her mid december.

We have to get Ayla's bloodwork done in the next week or so and also begin injections. We will have to change the day Ayla gets her meds b/c it will take both Ryan and I to do injections, so it will have to be on weekends.

Hopefully Ryan will be home soon from Owen Sound now that's its nearing season end. We miss him lots and it will be good to have him back home.

Ezra's bad dreams have gone away. He's sleeping much better now. Ayla has good nights and bad nights. She has a cold now. Everytime she is sick we pray that her body can fight it since her immune system is compromised. We will be taking her to our naturopath next week to start some immune boosting supplements.

I guess that is all for now. We will be spending a lot of time in prayer over this new medication they want to try.

In the meantime, Ayla's feet have grown and she got new running shoes. She's "running" now...as much as she can. And she's super cute when she does it. She also can jump with a little assistance:) I'm very thankful for how resilient she is. I was teary on Halloween b/c last halloween was a sad one. It was right at the begining when Ayla started to get sick and she did not have a good halloween. But Praise The Lord, she had lots of fun dressing up and trick or treating and watching Ryan and I (do all the work) carving pumpkins. This Christmas we have a lot to be thankful for as it's approaching. Ayla is healthier and happier and so are we. It will be a joyful time with lots of things to be thankful for...just as always but a special time to remember:)
It's hard for me to think of how ill she was...those memories are difficult so i'm thankful for new ones.

Thanks for the love and support over the past year (almost).
God Bless all of you!

Lacy

PS i should note, no one came in except for her doctors:) PTL for that:)

Our strong willed girl

Hi everyone!
It's been a couple weeks since i've sent out an update. I hope all is well.
Ayla is doing good. Her mouth finally seems to be feeling a bit better from the surgery and she goes in next thursday for a follow up.
She was cleared last week from the 2nd break. It's all healed and we got the "go ahead" which we already had. He didn't see any difference on the xray in bone density.
She seems to be handling being off the steroids well. We are hoping that she starts to grow and gain weight now. She wasn't sleeping well for the first week or so she was off them but now she's okay so it must have been withdrawls.
On November 1st she has 2 appointments at Sick Kids in Toronto. One is with a dermatologist (dermogologist/rhuematologist are the ones who actually diagnosed her) to make sure she doesn't have any more signs of flare ups. The other is with the lead rhuematologist at sick kids to do a follow up on Ayla and see the progress she has made. At this time she will see "tons of residents and fellows" so her Rhuematologist said, "i hope she's in a good mood!" As most of you know Ayla is never in a good mood for strangers...especially strangers with white coats or scrubs all staring at her and talking about her like she's not there and possibly touching her. So i'm thinking of limiting who can come in and see her...as much as people need to learn she doesn't need to hear all that's happened to her over and over again. I'm all for people learning and if i could put myself in her shoes i would say the more the merrier, but not for our wee girl.
This week i started reading a book called, "Aaron's Will." It's about strong willed children and how we as parents can understand it and gear it to be something positive (as hard as it can be). When i started reading the book i had Ezra in my head because he has always been strong willed. While part of the way through it dawned on me..."ON NO! I HAVE 2!" Ayla filled all of the definition of a strong willed child and then more. Sometimes it can be really frustrating when there is nothing i can do to coax her into doing anything...even something simple like, "where a sweater b/c it's cold outside." That turns into me saying, "fine. Don't wear it. But don't ask me to put it on you when we are in the car driving down the road." Sure enough she screamed ALL THE WAY TO WINDSOR (ABOUT 30 MINUTES) that she wanted her sweater on NOW. And some how managed to get half of her body out the head hold of her shirt while being buckled into her car seat. Some of you may think, "oh no...not sweat little quiet Ayla"...BUT OH YES, SWEET LITTLE QUIET AYLA! So in my thoughts i realized how thankful i am for her having that strong will. If she didn't have that, where would she be now? God blessed her (and Ryan and I) with that nature for her good and for our good. Thank you God for both of our strong willed children and give us wisdom to guide them. I think they get it from Ryan...but some people have recently have informed me that maybe...possibly...they MIGHT get it from both parents:)

Ayla's surgery

Ayla had her dental surgery today. It went pretty well. It was only supposed to take about 1.5-2 hours and it took them 3 instead...no one came to tell us, so we were a bit worried because there was mention of possibly extractions. But the reason it took so long was because she was able to save some teeth. So Praise God for that. Hopefully now that she's off of the steroids, her teeth will improve as well. Other than being dopey and sore she's doing pretty well. She was eating and drinking immediately after, so that is good.
Other than that she is doing well. She is walking even better this week and her foot is turned mostly in!
I met another mom of a boy in Ayla's preschool/therapy this week. She has a little boy that has some disorder where his bones will gradually curve (feet and hands). Usually they don't catch it until kids are 10 years old, he is 3. My heart broke for her when she said, "he'll never be able to play sports, or work with his hands...i shouldn't say never...but probably not." I shared with her how "they" (docs) wanted us to move to Toronto and if we didn't Ayla would likely not recover fully/or walk well ever. I told her that we are Christians and after lots of prayer we felt led not to go, two weeks later Ayla was taking steps on her own...so don't get bogged down with never because all things are possible. And the woman looked at her now and said, "she gets around great!" This for a kid that 7 months ago people were thinking she might never walk (without pain or struggle) ever again. So i said a prayer for her and her boy...you just can never know.
Ezra is having some bad dreams...he's really struggling to sleep and not be afraid. Prayers for our little man would be so very appreciated. We aren't really sure what else to do...
All in all this week was a good and slow week and so will next week be. Thank God for that.
Thanks for all the prayers over Ayla for her surgery and all else!

God Bless.
Lacy

9-30-10

Good evening everyone!! Thank the Lord that tomorrow is Friday...this has been a busy week.
Tuesday Ayla saw a "bone doctor" in London. Ryan was able to meet us there. They said that they are sure that it's the steroid that caused her bones to become so weak and brittle. They also have basically stopped any kind of growth in the last 9 months. She will be off the steroid tuesday and things should pick back up. We go back in 6 months for a bone mineral density test and follow up, to make sure things are going back to normal. They cleared her to do anything she wants to at Physiotherapy.
Wednesday Ayla had a pre op for her dental surgery which was rescheduled to the 8th. We were there a long time, the one day i do'nt get a sitter for Ezra...the doctor goes out on a call for while. Anyways, he was very kind when he got back and had a nice long chat with Ezra about whales. So it ended up to not be so bad.
Today Ayla had an allergist appointment reguarding her corn allergy. She isn't anaphalactic, which we knew. She has a delayed response. We go back the end of November for a patch test to see how delayed and how severe. Until then, we continue to avoid corn.
Ayla's leg is doing well. It's very tight and she's still walking like she has the cast on. The PT said the doc didn't cast her properly even though i specified her instructions, he did the "i know what i'm doing." Not understanding that there is a reason... She's walking with her leg turned out, so somehow we have to get her to turn it in.
She's as happy as all get out though. We went swimming this week and she loved it. I was thinking today...how much she's changed or hasn't changed. A lot of people told us when she was sick, "she'll never be the same again. She'll always be quiet and never the same happy girl." I was always confident no matter if that happened or not, she would be who God made her to be. Today, i took a moment and thought while playing with her, "this is who you are. You are a smart, funny, silly, playful, talkative, crazy little girl...with a little bit of shy stuck in there. This is just it...you never changed.

She is perfect...

Thank the Lord for that.

Lacy

Ayla-3 more days!

Hi everyone!
Ayla is doing well. Three more sleeps until she gets her purple cast off! Friday is the day. Tonight we were talking about how nice it will be to have a bath in the real bathtub, not on the kitchen counter:)
Today she was supposed to have an appt for just a check up with her pediatrician, when we got there for some reason it shows she never had an appt at all. Even though they called me to tell me about it. So once we again we get jerked around because of someone elses error and have to go back friday after we get her cast off. I'm trying to take it all in stride but at times feel like Ayla and I are rag dolls, just tossed around for whoever and whenever is conveinient.
Next tuesday Ayla got in to see the "bone doctor" in London. I'm not sure whether it's good or bad that she got in so quick when it was supposed to take "several weeks." I will just consider it an answer to prayer that we wouldn't be waiting long. She will likely have more bloodwork when we are there.
I am hoping to get her in to see her Rhuematologist soon b/c in 2 weeks she will be off her steroid (praise God!!!!) and i want to make sure she's handling being off it okay. That trip will take us to Toronto b/c the earliest they can see us in London is Mid/end November. At this time they are going to try to get hr seen by a dermatologist as well to check the parts of her skin that are still stiff/thick/hard and make sure it's just scarring and not her disease still not under control.
I am disappointed at the rigamarole we have been through to try and get bloodwork to Ayla's naturopathic doctor. I have been trying to get her a copy of Ayla's bloodwork to see if she has any suggestions on how to get Ayla to better absorb the supplements and it's seeming near impossible to get them to her, none the less to have them release them to me. I think i might have got someone who will make me a photocopy...Thank the Lord for that.
Last week we were away in New York visiting my family. We had a nice time. We also went camping and spent a day at Marineland in Niagra falls. The kids had a blast and Ezra even got to feed the Beluga Whales! We also stopped in Grimsby and had a nice visit with some missed family:)

Things are going well. Ayla is happy and having fun all the time.
We saw a friend today that hasn't actually seen her walk on her own since this time last year. We have seen her but it's been at intervals when she was just begining to move again holding hands, wheelchair around, the 1st cast that didn't allow her movement, and now... She saw her walk today and said, "I can't believe she is walking...it's been over a year since i've seen her do that." She gets around like nothing hinders her at all. Thank the Lord for that. When she gets that cast off...look out world:)
Thanks for all the support from my last update. I emailed a friend a few days ago and this is the best way i can describe how i feel, 'Most days are easy and i rest in the hands of the Lord. Once in a while, i have a day that i feel like, 'FOR REAL, HOW MUCH MORE?' And those days feel impossible to overcome. But then i wake up...and it's a new day and i feel like it's not so impossible.'

Lots of Love!
Lacy

"God will Never let you sink under your circumstances. He always provides a safety net and His love always encircles." -Barbara Johnson

Ayla update 9-2-10

Hi friends,
I've been trying to sit down and send an update for the last few days. Finally a moment.
Ayla and I had a long day at the hospital and doctors office monday. She had her anastetia consult, xray and appt for her femur break, and then a pre op appt with her pediatrician.
She was cleared by the orthopedic surgeon for her femur break. She's free to do whatever at therapy now as far as weight bearing goes. He wants to see her in a year to make sure that the growth plate hasn't shifted and all is still well (the break was really near the growth plate). I asked him if he noticed any difference in bone density from June to now and there is no difference. No weaker no stronger from what he can tell.
The other 2 appts for her surgery on Friday went well and quickly. We actually had a pretty good day as dreading it as i was. Praise God for that:)
I heard back from the Rhuematologist about Ayla seeing the endocrinologist in London. She said that he recommended a few more test through bloodwork (which we will get done next week) and then they will call us with an appt for Ayla...which will be several weeks. I'm not very impressed about "several" weeks because we all know that's anywhere from 4 weeks to 6 months. I've been praying and am going to do some pushing on that. She is falling daily and i feel like it's just a matter of time if her bones are improving that something else is going to happen. I pray every day sofr the Lord to cushion her falls.
There isn't any way i can get her not to fall. No amount of hovering will help when she is just tripping over her own feet (much like a toddler does when they learn how to walk). It's just part of the way it is.
Tomorrow (friday) she has surgery on her teeth. It's quite extensive...her teeth are much like her bones. The anestitist (who was so very kind) said he would give her an oral sedative before they brought her down to surgery, so she wouldn't be too traumatized. Ryan and i are a bit nervous b/c last time she had surgery, they "forgot" to come and get us when she was out. We were not impressed when after and hour of a surgery that would take 20 minutes no one had come to get us. Ryan walked right into the OR and said, "where is my daughter?" "oh...she's been out for a while..." So we are going to do what we can to make sure that doesn't happen tomorrow.
Anyway, i guess that's all the update for now. We are praying the surgery goes well tomorrow with no complications and we'll be home in the afternoon.

God Bless you all! Enjoy your labour day weekend!
Lacy

Update Ayla

Hi everyone:)
Ayla is doing well. Last monday she got some new shoes at preschool. One of the PT assistants she works with made them all up for her. She can walk with them on...pretty well actually. It only took a day or two for her to get used to them and now she's walking all over the house. It's very hard not to want to stay right on top of her every second, but i don't want to feed any nervousness.
This past week i was in contact with her rhuematologist in Toronto. She put Ayla on a quicker taper for her steroids, so she'll be off them in about 6/7 weeks assuming her body responds okay. Her rhuematologist said that she still has some spots of thickening on her skin, but she isn't sure if they are "scarring" that will go away in time with therapy, or if it's the disease still full blown in her system. There isn't a way to know until she is off the steroid.
She is also going to be in contact with her lead rhuematologist at sick kids (she's there too) and see what his thoughts are. As well as get in touch with the bone clinic at sick kids to see if they want to see Ayla and also to see if they have any advice. They could do a bone density test but she said that they don't have enough "normal" 2 year olds bone density to accurately say how far Ayla's is off of normal, but she will see what they say.
She also is sending us for bloodwork in about 2 weeks (she just had done about 2 weeks ago) to test for some other markers of bone problems.
I told her this week about Ayla's allergy to corn, which is pretty severe. I also put her and our naturopath in contact and i'm hoping they can connect (i'm praying we didn't tick anyone off).
So right now i'm just waiting ot hear back. I haven't heard anything since wednesday, and it's hard not to be hounding them...so God willing i will hear something tomorrow.
God continues to teach us all patience among so many other things:) Waiting on doctors is not my strong suit:)
I am reading a book called "When Life is Hard" by James Macdonald. It's not a "how to" guide it's a book that is meant to help you see God's hand in all things. I'm only a bit of the way through and have done a lot of highlighting:) One thing that stood out to me, was thi:
"Fact:Pain is often a central part of God's purpose in this world. He allows and even causes pain in our lives. It's one of the tools He uses regularly to get stubborn sheep to greener pasture."
Also Psalm 34: 18-19, "The Lord is near to the brokenhearted and saves the crushed in spirit. Many are the afflictions of the righteous, but the Lord rescues them from them all."

That's all for now. Thanks for all the emails of support and prayer. It is still greatly appreciated so very much.
God Bless.
lacy

Ayla got her purple cast on

Ayla got her cast on early this morning. Praise God for good friends that took care of Ezra today so Ryan, Ayla, and I could come home and have a nap:)
She is getting so very brave. No tears until they started taking off the temp cast for the new one. And when it was done, it was done. The doc was nice, it was fairly quick and it's PURPLE:) We brought our own casting from home (we had left over from the last time) b/c they only had white. She loves her purple cast and is getting around very well. She has even stood holding 2 hands on the bed. The doc said she can weight bare on it...so we will talk to her PT's tomorrow and see what the plan is. She still haven't been cleared really from the femur break so they haven't been doing much walking/mobility at preschool.
The doc today said, "she has osteoporosis." Now i'm not sure if he's assuming that based on what her bones look like on xray, or if that is what is going on b/c of the meds. I emailed her specialist (rheumatologist) today and explained to her my concerns of this continuing. How much worse can her bones get? Her teeth are also a mess. These meds are really doing a number on her, even with all the supplements we give her to restore what the meds drain. We are praying that some how we can figure out a way to get her body stronger again. Inside and out.
She's still very small. She still weighs less now than she did this time last year, right before she got sick.
It's all very overwhelming at times. Most times it's just "a day in the life of what God has for us." We try and make the most of it.
She is such a special girl.
I wanted to tell you all how smart she is:) We often think of all the stuff she "can't" do. But last week she had her assesment at preschool (i'm waiting for the write up). Most of her abilities, other than gross motor, range from a 3 year old to 4 and a half! Her fine motor are that of a 4 year old and so is her cognitive among other things. Her teacher was so happy to tell me all this and can't wait for me to see the the actual assesment. She's little miss smarty pants. So Praise God for so many other things that he has blessed us all with the we tend to overlook. Thanks for my smarty pants girl:)

That's all for now.
Thanks for the prayers.
God bless you all:)
Lacy

Another broken bone

Yesterday Ayla lost her balance while standing holding onto a chair and bumped her foot/ankle on the chair going down. We waited until today b/c it didn't seem like it bothered her when we touched it but she wouldn't walk on it. I took her to ER this afternoon and yes, she "buckle fractured" her left (not right like last time) tibia, right above her ankle. Tomorrow we will be going to the fracture clinic in the morning to get it casted...
Lacy

Ayla

Hi everyone! Sorry i haven't sent out an update in a while.
Ayla is doing very well with her cast off. I'm about to have a heart attack on a daily basis b/c she's moving and groving like crazy.
I keep praying for the Lord to heal her and make her stronger every day and for Him to keep her safe, while she's being a maniac AND WALKING HOLDING MY HANDS ALREADY AND PULLING HERSELF UP! She's also cruising holding onto things, but i stay right with her with my hands behind her just in case. It's hard b/c i am will not tell her that she can't walk. She knows that she can and she wants to and i'm not taking that away so it's my job to make sure she's safe while doing it. She's loving being able to swim. Our neighbors are kind enough to let us come over nearly every day:) I think that's helping so much with strength and flexiblity.
The orthopedic surgeons office called and rescheduled her next xray/follow up for the 30th instead of the 24th. It's sort of frustrating but we are hoping he'll be able to see whether her bones are stronger now than they were when the break happened since she's on less medication.
Also, September 3rd is when her dental surgery is scheduled for. Between now and then we have to go to the hospital 4 times and the dentists office once. I wish they could schedule all the hospital visit for the same day...but that's impossible. Some are for her leg and others are for her teeth. We also have to do bloodwork in the next few days (which is always terrible). We have to take her every 6 weeks and it's always pre-empted by lots of prayer that they get blood in one poke:)
Last weekend was nice, we got some extra time with Ryan b/c of the long weekend. Which we all needed:)
There is something i've been meaning to share and keep forgetting. A couple weeks ago at one of Ezra's t-ball practices, there was a young woman there walking her dog watching the kids play. She came over and asked me what happened to Ayla (this was with her cast still on). I told her. And she said, "God is good and whatever is happening it's for His good and his Glory. Nothing is in vain. Would it be alright if i prayed for her?" I said, "yes of course, thank you so much." Thinking she would go home and say a prayer for Ayla. Right then she put her hand on Ayla and prayed. This to me is always amazing and inspires me to do the same for people. I don't if you remember, but a similar thing happened with 'Gabby the Elf' at Christimas time, where she prayed right then for our family. God is so good and puts people right in front of you for so many unknown reasons.
This week i had the chance to talk to some friends, when Ayla wasn't there or near enough to hear, about how people are inspired or touch or intregued by what is is that we have that keeps us from falling into a million pieces. These are people of faith and some who have absolutely no faith at all and some who are looking for find something but they aren't sure what. Ryan and i talked and that makes all this worth it. If people can see that God is still good and even more good when you are suffering and that makes them draw nearer to him, it's all worth it. None of it was for nothing if only one person comes to know the Lord through this or draws closer because of what they have seen or heard.
The only way we are still carrying on and looking forward and not back (although some days are harder than others) is because of God. We could have fallen to bitterness and resentment and misery long ago...but why? God is good. Look at His blessings, look at the people He's surrounded us with, look at the miracles He's done, it's so obvious He is here if you open your eyes to see and your ears to hear.

Anyways, Jesus is the one who suffered for us. So we don't have to suffer but can find joy and hope in all things. As crazy as some people may think that is, IT IS THE WAY!

God Bless you all! And thanks so much once again!

Lacy

AYLA HAS HER CAST OFF!

AYLA HAS HER CAST OFF!!!!!
Yesterday the xray showed enough healing that the dr. okay'd the cast to come off. He said, "is she the kind of kid that's going to be running around and climbing furniture?" I replied, "um no. That's not her...she was only walking for 6 weeks before this happened. It will probably be a while before she is up and walking again." He said that it was fine to take it off. We brought her old magic legs (the ones with animals) and he said it's fine for her to wear those at preschool to keep her safe from the other kids running into her or falling on her. He gave some therapy instructions for her PT and OT.
We go back in 4 weeks to see what the bones look like. At thattime our PT wants me to ask if he can see any difference in bones now than when it first broke. As far as strength/thickness/density. We are curious to see if there is a change now that she's on a small amount of steroid, to see if it's effecting her bones less and less. Please pray that her bone continues to grow stronger:)

Last night, we took Ayla to the neighbors pool. Which was actually where we were on our way to when the brake happen. She had a blast!!! Praise God! It was so nice to see her kicking and moving and having fun with no pain again:) (Thanks Dave and Margaret)

Ezra has been very well. He seems to be doing better each week. Thanks for your prayers:)

Now that her cast is off we can do a bit of traveling up to see Ryan, my inlaws, and my family in NY:) Thanks so much once again and God Bless you all so much for your thoughts prayer and support in many different ways:)

Lacy

Ayla update 7-16-10

Hi all.
I wanted to let you all know that last on Friday Ayla saw the Rhuematologist in London. No big news to report except that she gave us the clear to continue weaning Ayla off of the steroids. That was great news! As much good as the medications do, they do some terrible things as well. It was mostly b/c of them that she broke her leg, that and the fact that to make your bones stronger you need to use them lots and she hadn't been for a while. That said, we had a break through at this appt. AYLA ACTUALLY SPOKE TO THE DOCTOR!! We have seen the same doctor lots and lots of time since all this began and she never once has spoken to her. Just cries or grunts or totally ignores. They had a short little conversation about how old she was and how old Ezra was and her necklaces:) It was so nice to have her not be so afraid. It was a fairly short appt and we don't have to see the Rhuematologist again until October. We will just communicate through email about the continuation of the weaning process.
A funny store from the doc appt was that there was a little boy a bit younger than Ayla and he was in the hall outside her room jumping and stomping his feet that he wanted a cool thing like she had:) Her "magic leg." They had to explain to him that it wasn't a toy and he couldn't take it home. Ayla was quite defensive about him taking her cast. It was cery cute. Much more refreshing than the "what's wrong with her?" question i get multiple times a day. Nothing is wrong with her, she just has a broken leg that will be better soon:)

Some of you know that Ezra was ill and having night waking and talking of "his brain going too fast." He's been fine for over a week now, Praise God:) Ayla was sick this past week with the same thing Ezra had, which was diagnosed as a viral infection. They had a pretty ugly rash at the tail end of it, but it's gone now. She missed one day of preschool b/c of it, but it's okay. She'll be back tomorrow.
People are still pouring blessings onto us and we are so thankful for how thoughtful people are and generous. Each time it happens it's like our eyes open wider to God's goodness.
We go back on the 26th for another xray. We aren't sure if the cast will come off then, but we shall see. They PT thought it would be better to leave it on for 8 weeks just to be safe. But we may ask if it's okay to take her out for an hour or 2 a week for a nice bath or something.
Thanks isn't enough for all the prayers you all are holding up for us, but we are very greatful:)
God Bless:)
Lacy

follow up 7-7-10

Ayla's xrays and follow up were nice and quick:) The bone is healing, not as quickly as "normal" but still healing. She goes back in a little less than 3 weeks and hopefully there will be a little more healing done. The bone is healing at a slight angle, but it should be okay and not need surgery since she's still growing....thanks for the thoughts and prayers:)
Lacy

Ayla 7-5-10 -Scooter:)

Ayla is doing well. Last Wednesday they got her a little scooter at preschool/physio. A friend of ours from church works there and got to show Ayla how it worked. She caught on quick. It's like a mini wheel chair, she can push around herself:) She loves it.
Preschool is better. This morning she didn't even fuss when i dropped her off. She's been telling us about her friends at school. Ryan thinks that is great, since he misses a lot.
We go for xrays on wednesday and follow up to see how she's doing, i'll let you all know how that goes.
The appt last week with the social worker went well. I'll be seeing her again next week. We made a list of goals that i have for our family and we prioritized them, so we'll be going down the list.
We had a great long weekend together! It was so nice to have Ryan home that extra day:) We made the most of it and had a camp out in the back yard. Ayla and Ezra thought it was great to sleep in the tent. I'm glad we did it before it got so hot!
I read this today in my reading:
The bottom may fall out, but He is still faithful. It is better to be in a storm with Jesus, than on the calm shore without Him.
Thanks for holding our girl and our family up in prayer:)
Lots of love. Lacy
Ayla in her new wheels (pardon the mess) :)

Quick Ayla update-back to school

Ayla went back to preschool this morning:) While not happy at first, she had a very fun morning and was happy the whole time:) She even made me a little craft. She has to spend preschool in her wheel chair to protect her from the other kids which i was nervous about...her being singled out. But i guess it was okay:)
I had an appt for Ayla this morning about dental work. She will need extensive work. She will be put under on Sept 3 to have the work done. Please pray for it to go well and for God to comfort her once again as she's in the hospital.
She will have another xray next WED to make sure the brace/cast is holding the bone well and healing is taking place. I know the Lord can do another miracle in her and heal her sooner than anyone can guess...just like "they" thought she might possibily never walk again...and 6 weeks later....WALKING. The Lord is in control and He is watching over our girl...
I have my first appt with the social worker on Wednesday. Pray that God can give our family some insight and help through this, as i know he can and is.
We are once again (it's never ended really) surrounded by some fantastic people...all blessing us in many ways in Christs name. We are very thankful and can't wait to spread those blessings onto others.
God Bless:)
Lacy

Ayla 6-23-10

Hi everyone. Ayla is doing alright. Her moods change quickly through out the day...i can't imagine how frustrating it must be for her. But she will say "this leg walk and this one broken, i walk soon). We went for xrays this mornign and the brace/cast hybrid is holding it in place fine and we'll go back in 2 weeks for another follow up. Thank God it's holding properly. We had her in this morning also for some alterations on her cast/brace. We had the other legs put on (not a cast) but the foam part (i'll have to post a pic) just b/c the brace was twisting and we didn't want it to hurt her leg more. So while it's good it will hold it more steady...it's wayyyy more difficult to change her and dress her. It was before, but now more so. Luckily i tried it there so he modified it a bit and it made it a bit easier. She fights with me any time it's time to get dressed, sometimes a very long battle. Everything is really more challenging now that it even was before b/c she only has limited movement in her leg. Like she can't sit at a 90 degree angle, which means she can't sit on the coutner and help me cook, which she used to do every night since she got sick and just became something fun we both love. We got her a new wheel chair b/c the other one was nearly impossible to get in and out of my car. This one is a bit small which is nice. She will be back at preschool next week (monday) and hopefully that will help some. She isn't sleeping well at night at all, awake 3-5 times. The social worker came out monday and we are going to get some help physically and emotionally for all of us. Praise God for that. Ezra has been fine this week. Ryan's parents have stayed down to help which we are all so greatful for. I'm not sure how i could keep it all together without their help. Anyways, that's all for now. Just a quick update so you all know what's going on. Thanks for all of you for praying and supporting us.

home now

Hi Everyone. We are home now. We got home around 7 or so.
Ayla got her one of a kind prototype never been made before brace/cast made by someone awesome in Windsor:)
We got it all fitted and adjusted around 1/2 and then we had to go back to the hospital to see the Paediatrician and the Orthopedic surgreon with her new "magic leg". So far, they think it's perfect and will be fine. She is able to move her right leg (the one broken) from 180 degrees (laying) to about a semi sitting position so she can sit in her car seat. I do'nt imagine it's super comfortable but at least she isn't locked in one position like we were worried about.
We are awaiting some funding options b/c it's not covered like a regular cast. But the man that made it found us a use pieced of this "thing" that he made, so it cut the cost down, praise God!
Our OT that Ayla has at preschool is coming out tomorrow bringing a wheel chair/stroller and help us digure out some other things that we need (she is also the quality of life specialist). Bum changing is kind of difficult and changing her clothes, so there will be a big learning curve for me on my own.
So thankfully this is all way better than what it seemed yesterday morning. That said, we will be back to building up muscle again after this heals. The heal time would usually be 3/4 weeks in a "normal" child with this break, hers may be quite a bit longer due to the drugs she is on. We know the miracles He can do, please pray for a short healing so she can get back to pounding the pavement.
I also spoke with our social worker through where Ayla attends preschool/phsyio and she's coming out Monday to talk through some stuff and help us get Ezra some help. He has really been struggling so much and i was going to contact her this week anyways, and then this happened.
Thanks so much for all your prayers and support.

Ayla-a bad fall 6-17-10

Today, after dinner, Ayla had a bad fall. We took her to ER and she has a fractured femur. She put a temp cast on after hours and hourse of waiting, we are home finally at 2am. We are to go back into the Windsor Hospital a 6am for a cast, (we do'nt think surgery). Please pray so hard for another miracle in her. She is so scared and just doesn't want to do this all again. She will be in cast for 6-8 weeks which means that she will likely lose all muscle tone in that leg again. Please pray for our little girl like you have been. Please pray for Ezra as he is having such a hard time and this is just adding to it. Please pray for Ryan's work not to be influenced by coming home to be with her.
I'm tired and going to try and get a few hours sleep before the day begins.

Ayla update 6-4-10

I have been meaning to send an update on Ayla all week but sometimes life gets in the way of email:)
Ayla is doing well. She had lots of fun in Florida and enjoyed the pool very much:)
Her leg that was bothering her seems to be fine now and she's walking around very well. She has fallen a few times which have resulted in a goose egg on her forehead and a scrapped knee, but no broken bones. When she does fall it's very strange...like her legs give out, not like she trips. I'm praying the falling stage will be over soon because it's not very much fun. She still isn't strong enough to break her fall, but her upper body stregnth is coming along. We bought her some new walking shoes and they seem to be making a big difference in the way she walks. She also got some custom made orthotics. Together they have almost eliminated the "knock kneed" walk.
She has a hard time walking in the grass because she can't pick her legs up and step at the same time. But it will come:)
She saw the OT this week and she was able to get Ayla to crawl on her hands and knees, which is a huge deal because she couldn't weight bare like that on her arms almost at all. It's tiring for her, but it's coming. Praise God:)
She's struggling a getting up from laying down. She can't seem to get the roll and push with the arm good enough to get herself up. The PT is hoping that that comes soon because it's something we have been working on for a while.
She is having lots of fun pushing around her stroller and shopping cart all over the house and playing outside.
I'm trying to put together a short power point presentation of the miracle God has done in her for our church, when it's done i'll send it out to you all.
Thanks so much for the love and support from you all.
God Bless!
Lacy

Ayla's checkup with the Doc

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

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

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.

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.

Not handling well

We started this morning weaning Ayla off her prednisone. It's one dose at the same amount as she usually gets in a full day (2 doses). She's been throwing up most of the day.
We jsut gave her some gravol and are hoping it helps. If she continues to throw up then we will have to go to hospital for IV meds and fluid. UGH, PLEASE PRAY SHE DOESN'T.

Magic Legs and Princess Gloves

I met with ACSD today (assistance for children with severe disabilities) and they are going to provide us with some help:) Praise God:)
Tomorrow we are supposed to start weaning Ayla off her prednisone. It could be achey/slightly painful for her. Hopefully it goes okay.
This morning she let us put on both her "magic legs" and "princess gloves" and didn't even cry! That's a huge step! Hopefully it continues. Yesterday we put them on her and she lost her mind...
She also got to go skating with Ryan today. He pushed her around in her stroller and carried her around a few times and stood her on the ice, she loved it. Next time we are gonig to try and bring her magic legs there:)

That's all for now.

Ayla update 2-23, birthday/phsyio:)

Ayla had her 2nd birthday last thursday the 18th:) She had a party on the weekend and dispite her scowl almost the whole time, she had fun:) We made her a really cool princess cake, she loves Cinderella. For her party we had friends bring gifts to donate to the hospital peadiatric inpatient secret closet. It's a big closet they have full of toys and when a kids having a rough day, tests, or just siblings there for a visit, they get to pick something. They were more than generous during our stay with both Ezra and Ayla, so we wanted to give something back. We got to drop them off yesterday and they were very grateful:)
The reason we dropped them off yesterday was because we took Ayla in to see our Ped. She keeps picking up germs and since she's immune compromised it's such a pain. She has had a cough on and off, mostly at night. But it can keep her (and us) awake. We wanted to see what steps we should follow should she ever pick up something more than a cold. They confirmed what we thought, DO NOT take her to a walk in clinic. We are to call our ped or fam and get her in ASAP, just explain to the sercretary the circumstances. She is fine, cough with post nasal drip. We were hesitantly giving her a cough supressent to take the edge off for her at night. They sent us home with a script for Venolin and an air chamber to use as needed to help loosen up any gunk now or later use. Praise God, they gave us the air chamber in the hospital ($60-$70 to buy) :)
Today she had physio. It went pretty terribly yet again. I so was hoping for another good week, but now they are pushing her. They are sure she doesn't feel pain, it's all emotional. They are no tears just cries and screams the whole time. It's so hard to watch her and try to keep encouraging her. The PT today told us, "she has to do this and she can do it." I know she can and i know she will but it's so hard that she doesn't want to...she just fights it all the way. They got her some leg braces today. They just hold her knees straight so that she can stand. She bared all of her weight today with the braces on. So it's just getting her to do that every day to build up those muscles, "MAKE IT FUN" is what they say....riiiiiiight. So God willing we can figure out a way to make it fun. She will have occupational therapy on friday, we are doing 2 days a week now. PT said her goal was to have her standing for a few seconds on her own by march 12 for her next Rheumatology appt.

It pains me because she must have some want and desire to be able to walk and run and play again. It was so hard at her birthday for her to watch all the other kids going up and down the stairs running and playing...and there she sits, watching. It makes me so sad.
2 steps forward, 1 back i guess.

Thank goodness for the Lord...
I heard something last week at a ladies mornign at church, "there are 2 times to pray: when you feel like it and when you don't." I just thought...wow that sums it up doesn't it....??

That's all for now!
God Bless!
Lacy

Birthday!!

My wee girl Ayla turned 2 years old today....
In some ways i can't believe it...in others i'm more than ready:)
We had a good day and she loved singing happy birthday and blowing out her candles:)
Thank the Lord for 2 year olds:)

Praise God Ayla physio went very well yesterday!
They changed her from the occupational therapy room (baby toys and not many people to ditract) to the Physio Therapy room which was busy busy with lots of cool stuff. Ezra was a great distraction today! The PT lady was so glad he was there. His goofyness and running around totally distracted Ayla and she had more fun. Just what we had hoped for last week. They also only had one person at a time, where before it was PT and OT together. She even laughed and played with Laurie (PT) a little instead of crying and scowling:)
All was good until Laurie wanted to put the envelope and try some new things. She said Ayla's knees are way better, so she wanted to if if she could convince Ayla to play at a kitchen. She kind of stood Ayla between her legs supporting her and Ayla didn't really like it at all. She could bare some weight, but wasn't having fun, that's for sure. Then she wanted to see how much weight Ayla could bare while walking supported (we were telling him we've been making her do that a few times a day). She could bare about 50% of her weight for a few steps. We tried it again (Ryan supporting her walking to me) so she could see from the side about how much...her legs were to tired and she could barely put any. BUT SHE IS GETTING BETTER:)
OT (occupuational therapy) brought her braces today. Ezra tried them on as "power ranger gloves." Ayla tried them on as "Princess gloves":) Whatever works. These braces are for her hands, fingers, wrists to help them stretch and straighten. She also got a Bob the Builder one for her elbows she is supposed to sleep with alternating arms...we will see how that goes.
She had swimming last night as well. She went with Ryan and did awesome! She went down the little slide and was floating unassisted on her back in a life jacket while kicking hard enough to make herself move!
What a great day! Praise God!

On a side note, Ayla told her first knock knock joke today:) WE laughed and laughed.


Ayla: Knock knock
Us: who’s there?
Ayla: banana
Us: banana who?
Ayla: Orange-hehehehe

She has heard her brother tell that joke too many times i think:)

Am amazing sermon from our lead pastor and his wife at HPAC. We heard this message at the begining of all this with Ayla...we had no idea how relative it would be. I listened to it again tonight online...
I'm so grateful for our church and Garth and Patty's story... Living with a Broken Dream
http://http//www.hpac.org/index.cfm?i=1647&mid=18&g=2468

Ayla 2-9-10

Ayla's physio yesterday didn't really go any better than last week. Even with Ezra there. She still screamed and cried the whole time...1 whole hour.
They are fitting her with some splints for stretching at night for her arms, wrists, and fingers and are going to find some for her legs. They are trying to find some there that fit her so we don't have to purchase some (they only make them in the states) or wait for the ones to be made there. If they make them there it will be even less fun for her to go through the fitting and molding and refitting and adjusting. They found some that fit her they just have to modify them a bit.
The PT and OT people decribed it like this, her layer of fascia (the "shiney" part of the chicken skin, after you peel off the outer) is stuck to her regular skin (the part that peels off easily), where they should slide around eachother they are stuck and inhibiting movement in her joints b/c the skin won't stretch easily. They put some special tape over her knees hoping that it would cause the skin to pull and "wrinkle" thus causing the stretching she needs. She was hoping it would stay on for a couple days....but it came off mostly last night in the pool:) So we'll try something else next time.

I was feeling very sad last night. At swimming Ayla had a terrible time. She usually loves it. I think just a hard day for her. It's so frustrating that really....there's nothign we can do to help her...nothing we can do to make it better. Everytime we see someone (Pt, ot, doc, etc) they are giving more advice/suggestions and we just can't seem to contain it all and remember to do it and how and how often. "Don't let her do this, let her do this, make her do this, etc"
It's so overwhelming...and to think last August/september she was running around in the back yard with Ezra...now she can't even roll over! I try not to ever think about how she used to be b/c i don't know if she'll ever be there again. I know this is all God's plan...and i know someday i will look back and have an understanding, but for now....i just don't get it! I am accepting of it most days because i trust the Lord...but it's a struggle once in a while.
That said, she's our little chatter box now. Talking like crazy and she is having many more happy times than before. Most days are fine but excuse her when you come up to her and she says "no!" or gives you a scowl. That's just her personality even before she was sick. She's gaining her weight back, now we have to try and turn it into muscle:)
She is getting bored with our jumperoo and excersaucers now so we'll have to see if we can borrow different ones from friends.
Well we are off to take the kids sledding:)