Merry Christmas!
I think the last time i wrote you all it was before Halloween! Time flies when you are...um...alive i guess:)

Ayla has been sick for over 2 years now. This time 2 years ago we were amping up to take our girl in for a bone marrow draw to check for cancer. Many tests, surgeries, pain, tears, hopelessness, breaks (heart and bones), AND MIRACLES have happens since the beginning. We are here to say that God works in many amazing ways and we are so thankful for His promises.

Since i last wrote Ayla has had 2 more treatments (one of which warranted an infectious disease control room) and a Rhuematology appointment. Along with many other exciting things.

In November we had a 'possible' secondary exposure to chicken pox with the kids, which was why were were put in a "control" room for her treatment...it was rather boring b/c we (all of us) were confined to the room which means...take a deep breath...NO PLAY ROOM FOR THE KIDS. (Windsor Hosp has a good play room) Niether of the kids are vaccinated against it which isn't a big deal in itself, but b/c of the medications (immune supressents double duty with the new drug) it makes it pretty dangerous for Ayla to get it. It would warrant a 5 day hospital stay with immunoglobulin infusions. Praise the Lord they didn't get it:) (Truly an answer to prayer). Hopefully someday it will be safe for them to get it and we can get it over with!

We saw the Rhuem in London mid november. Ayla has grown a lot taller and heavier. So i think she's putting many minds at ease of the possible inhibiting of bone (limbs actually) growth. Her doc is happy to see the weight/height that she's gaining and how much happier she seems. She didn't notice any change in her Eosinophilac Facciitis, which i think she was hoping to see after 3 treatments. So we have 2 more to go (possibly 3) and they will reassess. This doctor is going on mat leave, so i'm really praying that we don't have to see someone new and have her assessment done by them! They are going to try and get us in to see the lead Rhuematologist at Sick Kids in Toronto for March (after her 6/7 treatment). We have seen him a couple times before, so i would feel better him seeing her than someone coming in clueless. We shall see. After the 6/7 treatment and assessment they will determine whether this experimental drug is working or not. If not, she will stop getting the infusions and we'll just continue as we have been with her home injections. If it does....then she will continue. Ayla's doctor shared this with us: at a rhuematology conference not long ago, Ayla's doctor met another doctor who had a patient (9 year old girl) that has EF, just like Ayla! It didn't deteriorate her as quickly and as powerfully as it did Ayla, but after 2 years of being on immunosupressants HER DISEASE DISAPPEARED! POOF! GONE WITHOUT A TRACE! It placed hope in our doctor about Ayla's situation, someday she may be perfectly well without a trace of this disease this side of Heaven.

We also have a Bone Mineral Density scheduled for March to follow up on the 3 broken legs and will meet with the endocrinologist shortly after.

The most recent treatment Ayla had this past friday. IT WENT AWESOME. You all know, Ayla has had a very difficult time (as well as many nurses) getting needles of anykind into her veins b/c of her disease. She has had much emotional trauma b/c of this. This past friday, PRAISE GOD, the IV went in perfectly! She didn't even shed a tear! I am pretty sure that is the first time ever (including almost all home injections) she has not cried for a needle AFTER OVER 2 YEARS! She even went and brought the nurse who did it a reindeer candy cane after, so she wasn't even mad at her:) That is a miracle in and of itself! Another wonderful thing that happened that day, was that their was an 11 year old girl, who saved her allowance all this year (and ask for donations from family) and donated $750 worth of toys for the kids admitted or in for treatments. So Ayla and Ezra got to pick something and they made little cards for whoever this kind little girl was:)

Ayla is doing very well physically and emotionally. Her teachers and social worker have just made a special chart/book for her with a list of emotions and choices for her to make that apply to every day. Often Ayla is very difficult to read/figure out. Proof of this happened today when her teacher thought she was clearly mad and she pointed that she was happy and wanted to play. Ayla is very verbal but holds back lots with other children and adults around. This will help them and us immensly!

Ayla just finished her dance class this week and if i can figure out how to load a video onto here, i will do so. (She's the one in the pink tutu/dress with brown running shoes and pig tails). She wants to take dance again after Christmas:)

We are doing okay. We continue to learn much on about the story we are written into. We are thankful for this story and although much pain and sadness has happened these last 2 years, we would not change any of it b/c God works in more awesome ways that we could ever dream.

Ryan is not working and hasn't been for a while...basically since my last update. He's trying like crazy and had many connections made, we are just waiting and praying that we see what God's next step for us is...whatever it may be. We would appreciate prayer for this if you have a moment to spare. Thank you so very much!

Merry Christmas to you all! I hope you all enjoy your time celebrating this special time of year!
Lacy

PS, i couldn't load the video but i included some pics.

Make a wish trip and update

It took me a while longe rot put it on here...sorry!

Okay, so we've been back for almost 2 weeks now...i've made many attempts to sit down and write this update.
So here i am...hopefully this is my final attempt. Part of what i think makes it hard is that i can't even convey in words out loud or written how amazing our trip was. I don't think i realized how much it was needed until we returned home.
We all felt really rested and restored despite the constant entertainment and excitment our Make A Wish week held. This coming 2 weeks later...
I understand that many of you probably don't need every specific detail of our trip...but i can't possibly explain to you without giving some details about the blessings we were showered with.
I'm fairly certain that i told you all that the Ezra and Ayla did not know about this trip in the least bit. We were able to keep everything a surprise! Which was amazing in and of itself b/c in a small house pack 4 people to go away for a week is not easy!
Every detail was not given to them until they were faced with the surprise. The morning we left, the limo pulled up and the kids stared at it...until Ryan said, "Well....get in." They were extatic...big smiles all around!
They didn't know where we were going when we got to the airport, until we were in the air the pilot announced, they didn't know about Give Kids the World Village and all that that entails until we arrived, they didn't know about Disney, Star Wars Jedi training, meeting Mickey and Minnie, Santa, Sea World...none of it until it was happening.
Give Kids the World met us at the airport with a little special sign that said, "Ayla Hewitt."
For those of you that don't know, Give kids the world is a village built for wish children from all over the world. It really has an amazing story behind it. It really is a special little village where all the worries and struggles families face with children who are ill face disappear for a week. All you see on every families face is joy and hope. The sorrow and worry is gone for that time spent there. The village itself fills 1500 volunteer hours every week, with only 30 paid employees. I would say there are about 100 villa's or so. There are 2 pools, one with a huge splash pad, fishing, ice cream from early morning until late night, a boundless playground, arcade, mini golf, nature trails, castle of miracles, carosel, horseback riding, and the list goes on with events that they plan every day. We were able to celebrate Halloween as well as Christmas at the village.
Every thursday was Christmas in the village, so they play Christmas music, set out Christmas decorations, and have parade and Santa after dinner. After you meet Santa you step outside where the kids are faced with 2 great big racks of toys that they get to choose a toy from.
I should also add, that everything at the village is free. They take care of everything...all you could think of for that amazing week. I didn't have to cook for the whole week...not even pour cereal! We had a hot breakfast, lunch, dinner every day that was deliscious. Not the mention ice cream whenever we wanted!
They provided us with tickets for all the disney parks, sea world, and universal. We did Magic Kingdom first and we able to see everything we wanted and still be back for dinner b/c of our Make a Wish pass, we didn't have to wait in lines at all...which was great! We did Hollywood Studios where Ezra got to attend the Jedi training academy and fight Darth Vader, which would not have happened had it not been for Make A Wish, at Universal we enjoyed Suess Landing (where the Dr. Suess village is) as well as the Curious George play area (Ayla's fav b/c she got to play in the water in her clothes!!!), as well as we got to go to Disney Downtown and spend money that they gave us for Souveneirs...it was nice to for once not to have to avoid a store b/c you know you don't have enough money to buy anything there. Ezra got to build his own to take home Lightsaber and Ayla bought a pair of sparkley sleeping beauty dancing shoes.
Each day when we returned home there were little "treats" left in our villa. They ranged from board games to movies, stuffed animals to small toys. I was so glad a friend suggested to bring an Extra bag for the "stuff" we would get while staying there. Good thing we brought a hockey bag...
I would say Ayla had two favorite things in the village. The first was a carosel with all different kinds of animals...you could ride it every day as many times as you wanted. I'm almost sure she rode every animal on it. The second, was a spa they had open every evening. There you could get spray tattoos, face painting (her ultimate fav), manicures, and hand massages...(and also a surprise My Little Pony lunch box which she carries almost every where now). She and Ezra had their face painted almost every night.
A couple mornings a week characters from the different parks come to the village. We met Mickey and Minnie (Ayla played shy) and got pictures with them, as well as Goofy, Pluto and Belle (from Beauty and the Beast...Ezra's favorite princess b/c she said she knows all about Jedis." Also for The Pirate and Princess party they have every friday night, SHamu and Dolly the Dolphin come dressed up for the party. Ayla preferred the be a pirate by the way...i'll include a picture:)
There's much more i could say but i won't carry on any longer...other than to say that we are truly thankful for this opporunity. We thank the Lord for the rest that we had and the restoration that he provided through it. We were growing quite weery the week before we left.

He knew that...

A quick update on the experimental treatment:

She had her 2nd treatment a week ago today. The IV poke went better. One long poke instead of mulitples...so that was good. Still very hard on Ayla but better than the first.
She handles the benadryl better than last time and i think even had some fun while we were there. One for the highlights is that she gets to order breakfast like in a restaraunt...yes, hospital pancakes and home fries. Surprisingly tastey:)
Despite the actual treatment...it's almost "fun". Ryan's parents come down to help with Ezra b/c Ayla requested that he's there with her. So we all play in and out of the room and do crafts and color. When we are there is also the same day the therapy dog comes for a visit and the clowns:) So all in all...it's an okay day. It was actually about and hour and a half shorter this time, which we are very thankful for.
Her next treatment is november 10th and then she see's her Rhuematologist on the 18th...and we will see if she notices any difference.
Please continue to pray for this experimental med...that it would work for Ayla.

Lots of love and thanks.
Lacy

9-30-11/experimental meds

Good afternoon.
I'm so thankful for all the encouraging responses we got from the update and pics i sent of Ayla dancing! She is really having fun with it and loves it very much. She had dance again last night and was all smiles.
This update i'm going to try and keep brief. We have had a busy day.
Ayla had her first treatment of the experiemental medication today. We arrived at the hospital and 8am this morning and didn't leave until 2. The medication itself only ran for 2 hours but they had a lot of trouble getting an IV in...once again. That was the worst part of the day. They ended up having to put it in one wrist and then board it and tape it so she had no use of that hand, which was frustrating when she was trying to play and distract herself. But it is what it is...
They gave her some benadryl before the med to prevent any allergic reaction and it made her tired and irritable while we were there. But for the most part it was okay.
They have been doing some social emotional work with her at school with a social worker so she can process how she feels about the new meds and i think she's handling it better emotionally than i thought she would. We will keep praying...God will help her...and us. The child life people at the hospital are amazing also. Lots of new toys and things to distract her. They also had a therapy dog come in, which Ezra really liked. Ayla was so tired at that point she couldn't really enjoy it.
We were also very blessed by my mother in laws' bible study group. One of the women in her group has cancer and during one of her treatment she was thinking about Ayla and suggested that they all get little toys and things for Ayla to do while she has hers. So Ayla spent much of the morning distracted by playing with new toys, coloring with new markers, and making crafts in her room. This was such a great thing...when my mother in law told me about it, i got a little teary. For a woman to be thinking of our little girl in the midsty of her own trials...THANK YOU:) God is good.
All in all the treatment went well. The nurses and staff were all great. We are very thankful for the many blessings that today provided, along with a hope for healing for our girl.
That said, i have a secret to share with you.
Last year a friend of ours that has a chronically ill child suggested a wish from Make a Wish for Ayla. For this the parents have to "okay" it and then the medical staff decide whether or not she qualifies for a wish. I sat with the paper work in my bible from last summer (the summer of breaks) until after Christmas...and finally i decided to send it in.
In March we found out that she got a wish. It was kind of bitter sweet. It was almost admitting that she was ever 'THAT' sick...but such a huge blessing.
So tomorrow, we are going on our make a wish trip to Give Kids the World in Disney World. Everything is all taken care of for us and all we have to do is relax and enjoy...I DON'T EVEN HAVE TO COOK THE WHOLE TIME WE WE ARE THERE!!!
Part of the reason we haven't said anything was b/c we are keeping it all a secret from the kids. They have no idea that at 8:30am tomorrow a limo is going to pick us up, take us to the airport and where we are going. Ryan and i keep finding out little bits and pieces about the trip and are getting more excited too. Like the limo taking us to and from the airport!! We only foudn that out a few weeks ago.
We feel truley blessed and overwhelmed...by all the things God has put in our path to give us rest sometimes.
Anyways, that's my quick update...i will let you know how the trip goes!
We love you all and value all your thoughts and prayers very deeply...

Lacy

PS, on a side note. Ryan is really struggling with work. If you think of him...please say a prayer. Thank you again...

Thank you Lord for miracles!

This is just a quick update with Ayla. More of a praise i'd like to share with you all.

We decided to put Ayla in a parks and rec dance class b/c she'd been talking about some other girls at school doing dance and that she'd like to try it...
Here are some pictures. Words can hardly explain how i felt sitting there with tears of joy in my eyes for those 30 minutes...thank you Lord for your miracles.
(She's the one with the little pink outfit/yellow undershirt/leggings:) )
^These are just a few pictures of the almost 100 that i took*

Ayla update 9-4-11

Wow! Labour Day! I can hardly believe it's almost fall! Although Friday and Saturday were quite hot, labor day (excuse the inconsitent spelling of that...I'm American and i just don't understand the "u"...but i try!) weekend reminds me that fall is not far off. Cooler weather and less mosquito's!
I have a surprise for most of you! It's been so long since i sent an update, guess what?!?! RYAN IS HOME! Not home for a visit, BUT ACTUALLY HOME WITH WORK HERE IN WINDSOR! Thank you Lord! It's about a month long project, but hopefully it will turn into more. And actually being here will make it a bit easier to hit up some people personally for work. He got home last Wednesday and starts work Tuesday. It will be so strange to have him home for dinner and bedtime every night! We are so very thankful for all of your prayers.
I was just sitting here reading a devotion about "looking for God." How many things go by that go unnoticed because we just keep pushing ahead...wanting to get to what's next instead of what is now. It made me think about Ayla...of course.
Just tonight we were going through some of her old clothes to pass on to another little girl. She was helping. She pulled out these little brown suede boots someone had given to us when Ayla was tiny, at the time they were much too big for her so we put them away for another time. I had sometimes thought about the boots and how i coudln't wait for her to be able to wear them! But today when she pulled them out, i felt sad. She never did wear those cute little boots...when they fit her...she couldn't walk...she was far to sick to even stand...
Funny how those little things can set us back into heartache that seems so fresh.
That said, how many things do i over look in a given day just because life happens? Ayla running in the backyard, kicking a soccer ball, swimming, jumping, riding a trike, all these things that we kept waiting for to happen sometimes get overlooked or don't seem as "miracle worthy" as we once felt like they were.
So as i sit looking at those silly boots, I am thankful for the many miracles God has done in Ayla's life...our family's life.
We have decided that we are going to try the trial medication with Ayla. We have prayed a lot and talked to her old doctor and her whole team at the John McGivney Center here in Windsor and we are going to try it. There are some risks involved, some big, some small. But if anything bad happens, we will stop right away. Her medication will be by infusion at the hospital 3 times in the first 6 weeks and then 1 time every 4 weeks after that. The IV will likely run 2-3 hours. She will have to have a chest xray and a TB test before she can have the drug, she's scheduled to get those on the 14th. So she will begin shortly after that.
Part of the reason we decided to do this was because, the doctors really think this is the only shot Ayla has at being "normal". This is really all they have left. And when i ask, "well how far away from normal is she?" It's evident to them, that her skin, thought developmentally she's doing well, will never get less tight/stiff/thick without more help. And if we leave her like this for longer, it's less likely that any medication will ever work. Also, because of the way that her skin is, if we leave it, it could possibly inhibit growth of her limbs (limbs being significantly longer/shorter than others), muscles, and cause constant contractures of her joints.
So while now everything seems so "normal"...we have to think long term.
Someone said to me, "Well, think about when she's a teenager. Would she be more likely to say, "Why did you make me do those IV's? They hurt me!" or "If there was a chance a medicine would have made me better, why did you do it?" TRY THINKING ABOUT THAT QUESTION!
Anyway, I've been in contact with her social worker and she's going to be in touch with the child life people at the hospital and try and set it up so that she has something to look forward to while she's there. A special craft or a new movie, something of that nature. The social worker will also work with Ayla and I doing play therapy so we can see how it's effecting Ayla social-emotionally, which is really what i'm concerned about the most.
Maybe this is the next miracle God has for Ayla...maybe not. I'm sure we will learn something and grow somehow...no matter what, as long as we trust Him and if we continue to stop and look at the "small miracles" He does every single day.
Lots of love and God Bless!
I hope you all had a great labour/labor day weekend!

Lacy

Experimental Medication 8-17-11

So it's starting to cool off a bit here now, at least at night...we will see how long that lasts. Our neighbors pool was a bit chilly yesterday at 80 degrees, instead of the near 90 it was most of the summer. I gotta tell you, those few degrees make a big difference!
We were very blessed to have Ryan home for a visit on the 5th-12th of this month. I spend the first couple days he was home away...I got to go to Nashville with a few of the women from a MOPS (mother of preschoolers) group from our church. We had an awesome time and it was much needed for many of us that went. I came back feeling like a person again, not just a run ragged mom:)
Ryan's visit was very good. The kids enjoyed their couple days with just dad. We packed in a dinner out, a day of boating and tubing with Ryan's parents, and a campout in the backyard (smores and all). While Ryan was home he also went for a meeting/interview with a company from Sarnia. We still haven't heard back from a few of the other things we have been waiting for. We are trying to wait patiently and pray like crazy. With the one from Sarnia, they said that we should hear by the end of this week. So thanks for your continued prayers for Ryan to find work closer to home soon. They are very much appreciated.
As far as things with Ayla...they are going well. She's had some cramping in her hands the last few days. They seem to sieze right up, so her therapy people will check it out tomorrow. She's having lots of fun this summer in splash pads, pools, playgrounds, and watching Ezra play soccer. She will be old enough to play next year...and she found that out and now is very much excited about playing next year. Please pray for me to not have a heart attack the first time i see her on the field with 20 other kids running at her...okay? *grin*
I heard last week from the pharmacudical company about the experimental drug they want to try Ayla on. The govt won't approve the medicaion b/c her MRI doesn't show her disease now that the inflammation is gone and short of a skin and muscle biopsy, they won't. But the company said they would give Ayla a "compassion dose", which means that for 6 months, Ayla could use the medication free of charge. After that they would apply through Trillium for her to get it, but the govt will not pay for it. It is $1100 per dose and she would recieve one dose per month, if we decide to try it and then it actually works after the 6 months trial. That said, we have time to decide whether or not we want to do it or not. It is given by infusion (IV), so she would be at the hospital for a few hours for each dose to run. Which in my head, when we found out it was infusion, we wanted to immediately say, "no way!" The things is...what if it made her all better? What if it cured her? Would it be worth the trauma? But what if it does nothing? It certainly wouldn't be worth the trauma...but there is no way for anyone to know if this medication will work or not, without trying.
So...do we try it?
I spoke her her Rhuematologist today and she was understanding but also said that Ayla's skin is very far from normal. And because of it's stiffness/tightness/"dried play doughyness" it can cause joint stiffness, degeneration, and things of that nature. So she obviously feels it would be very worth it to try. They have used this drug on children before with scleraderma and it's done well. That said, in those cases children are on it for year, not 6 months. So who's to say we would even see a difference in 6 months?
There are a few "minor" side effects such as brain swelling (white matter), a possibly increase in malignancy (they aren't absolutely sure, in fact, they think it's more relation to rheumatic disease itself, not the meds), as well as swelling/discharge from eyes, among other things i can't remember b/c of all the information swirling in my head.
Long story short (haha, I know right??) I am going to have a consult with her old Rhuematologist out of Sick Kids. She's the one that originally wanted Ayla on this med, but she's the one that has seen Ayla since the beginning...
Her PT's and OT's aren't sure the meds would help...they wanted to see if there was a way they could take 6 months (off the med) and measure mathematically the rate of improvment in her skin, flexibility, strength, etc and then see if she has plataued or if she is still improving.
Anyways, it's a very tough position to be in. A hard choice to make. We are praying and praying God will lead us to the right choice, but all the what if's keep building up and make it harder to be sure.
I'm very scared of how the increase time and procedures in the hospital once again will effect her emotionally, behaviourly, phsychologically...She's come so far in all those area's also, is it worth it for a "maybe?"
Lots of love to you all. Enjoy your last few weeks of summer! I will let you know what happens.
Thanks again for your love and support through these last couple years (yep it's been almost that long since 'Ayla got sick'...those 3 words ring in my head often).
Be blessed!

Lacy

Something from a devotion this morning i wanted to share with you all:

"I needed to ask one question in order to move on: “Is God enough?”
When a friend betrays me, is God enough?
When I need to forgive what seems unforgivable, is God enough?
When my child has issues out of my control, is God enough?
When my marriage is on the brink of destruction, is God enough?
When I am not forgiven by another, is God enough?
When my mom is dying of cancer, is God enough?
When others don’t recognize my value, is God enough?
When I struggle professionally, is God enough?
When someone I love uses words to hurt me, is God enough?
When I am in debt and don’t know how I’ll pay my bills, is God enough?
When my past haunts me, is God enough?
When my health declines, is God enough?
When I am let down and disappointed in my life, is God enough?
I discovered the answer I always came to when I asked “Is God enough?” Yes He is."
http://devotions.proverbs31.org/2011/08/is-god-enough-2.html

7-27-11

Hi to all my sweaty Ontario and New York friends and family. Ryan just informed me that while yesterday it felt like a very literal (47) 117 degrees, this morning he went to work in Calgary with a sweater on at a balming (10)...yes, you may all throw things at him the next time you see him. Especially after he took a picture of his thermometer and sent it to me, i'm sure chuckling. That said we have been keeping cool, enjoying our central air and the neighbors pool. (Forgive me but it took me a few days to finish this update...)

So what's new from the last update...? Ayla is doing well. She's gaining some strength for sure. She loves to hang off the grocery cart now...which i'm thankful for, BUT IT ISN'T VERY CONVENIENT! They had a little scare a week or 2 ago at school. She was jumping on a little trampoline and she was doing very well so her OT allowed her to jump just rest her hands against Ayla's...well, i think Ayla thought it was a big trampoline and she flopped down and banged her head. She cried a bit but i think her OT must have been almost in tears, b/c when she was telling me about it i thought she was going to lose it. They see her as a little glass girl sometimes. Even a friend of ours was with us at the park and Ayla was going down a narrow set of stairs with railings on either side, jumping and swinging down and i think her heart skipped a beat many times. It's so hard to rest...and know that God is watching her every move protecting her, b/c of what has happened to her. BUT HE IS THERE! And she is getting stronger and braver and bigger every day because of Him.

Recently we saw a few people we hadn't seen for over a year. We happened to be at a childrens play place. They saw Ayla and were so excited and surprised to see her walking. They asked me how long she had been walking. I had to think...for a long time i got hung up on how long it had been since she walked...since she moved even. I explained we had some bumps in the road, but she has been walking for..... almost a year! Time flies! It suprised me to think about it because really, day to day just becomes how it is when you don't know what's going to happen next (which i guess we never really do). We just became thankful for each day and the progress and then when i ran into someone who was so shocked i went, "oh. Well yeah...she's walking." So matter of fact. I don't want to take anything for granted. Nothing. We have been so blessed by the many miracles that have happened to Ayla and to our family. I never want to forget them or become so matter of fact. While typing this, i'm thinking that matter of fact thinking almost might come from trusting the Lord. Learning to trust that He has a plan for Ayla and that His plan was for her to walk again and if it wasn't, then He would help us deal with that too. Peace in whatever situation. Knowing that God will provide for every phsycial and emotional need that we have. I think most people have a head knowledge of that...but to actually know it...feel it...see it makes it so much more...POWERFUL. So yes, our girl has been walking for almost a year! Praise God!
A few weeks ago i took Ayla to see her Rhuematologist. She gained some weight. She's finally bigger than she was almost 2 years ago when she got sick! Praise the Lord for that! A growing girl! They are still trying to work out the details on an experimental drug for Ayla. It doesn't sound like she's "sick enough" for the govt to approve it short of doing another skin and muscle biopsy (which was how she was finally diagnosed), which is not going to happen. So the docs in London and Toronto are talking about what to do. They could just request it from the pharmacudical company...they are supposed to call us when we know. Until then we pray about whether or not we should even try it. It would be 3 injections in the hospital in 6 weeks (she said it would have to be London) and then 1 a month in a hopsital after that. It all has to be done in a hosptial b/c they have never used this on a child her age before or for this disease. I will let you know more when we know more.
Two weeks ago i took Ayla for a cleaning and check up at the dentist. We talked about the jaw pain she was continueing to have on and off. We spoken with her about it before and she couldn't find anything wrong. During the check up she noticed the molar in the spot where Ayla's pain is "around" was wiggling. She did an panoramic xray (which Ayla did totally awesome with) and low and behold that tooth was dead. She wanted to remove it right away but it would have to be done in a hospital. So that friday Ayla had a pre op consult at the hospital and surgery 6am Monday. They removed the tooth and did some more xrays. They could find nothing wrong with the tooth or any reason for it to be dead so they sent it off the pathology to be checked out. The rest of her mouth was fine but it looks like there may be some issues with her adult teeth. The dentist said it could be genetic or because of the heavy steroid therapy when she was so young that it inhibited the formation of some of her adult teeth (which they should be able to see on xrays at this point). We will deal with that down the road. The surgery went fine. She always comes out so great ready for her blue slushy:) She is getting to be such a trooper. She just knows the routine now and goes with the flow. They aren't totally sure if this has been what's causing on the pain but we are hopeful that it is.
This week i had to give Ayla's injection alone. My little man is away with his Nana and Papa this week. She did okay...much better than i anticipated.
Ryan still had not heard about work here. So he continues to stay out there. He will be home for a week visiting the begining of August. It's been over 2 months now since the kids have seen him. We all need this...especially them. Thanks for your continued prayers for his work.

I guess that's all for now. I hope you all are enjoying your summers and keeping cool.

Oh! And i wanted to add, this is big: AYLA MADE A FRIEND AT SCHOOL! Someone she actually plays with! I went early to get her today and was watching her on the playground. They were running and laughing and playing TOGETHER! I was so happy! And she was so happy to tell me about her! And when they said goodbye, they even gave eachother a kiss:) It was so cool to see that she was having fun with another kid! Praise God for that answer to prayer!

Lots of Love and blessings!
Lacy

PS I read this in a devotion today and wanted to share it with you all:

"...she had something better than a life without trials or sickness. She had the companionship of Christ and the assurance of His strength and enabling grace."
http://devotions.proverbs31.org/2011/07/perfect-weakness.html

6-27-11

Happy summer to you! Isn't it strange (at least for those of us in Ontario) that the summer has so far been much cooler than the spring?? For a week or two in May and the begining of June we were swimming every day in our neighbors pool and it's been to cool/breezy to do so the last few weeks, other than a day or two.

I actually had to go back and read my last update! It was a month ago! Once the weather changes time seems to fly by.

Ayla is doing well. Baby steps at school as far as opening up and making friends. She's so happy and runs to me with a big smile when i pick her up. She seems like she's having so much more fun. Her favorite thing to do as of late is play "red light/green light" in the gym with the other kids. Her teacher said after the first time, "you should have seen the look on her face. It was like, "look at me!!! I can run with all the other kids!!!"
Her Occupational Therapist over a couple weeks did a "test" to see where Ayla was on a scale for school readiness (at least i think that's what it was for...and no, she won't be in school in the fall). She wanted to see where she was at cognitively, fine motor, speech, etc. Get this.............she scored a SUPERIOR! Her OT said she's never actually had a child score superior before! Isn't that awesome! Our little smarty pants. God certainly made her to be one special little girl. The only real thing they can continue to work on is her strength. A different test showed that her stength is the low end of average but she's confident that it will come. Instead of OT seeing her every week, we are going to do every other for the summer so that Ayla can get more class time (they pull her out for OT) and work on the social/behavioural stuff.
Ayla got a cool new pair of running/water shoes a week or 2 ago. Our neighbors are very kind and share their pool with us and they also have tennis courts near the pool the kids love to run and play on, but a few falls and near heart attacks with Ayla running in crocs later, i decided we should get her some good shoes that can swim and run. They are super cool...(actually i think everyone in our house would like some now, hehe). Hopefully it will help me feel like i don't have to say, "be careful! Watch out!" about 100 times in any given 5 minutes.
Ayla has a few appointments in the next month or so. One at the dentist to see if her teeth are doing better now that she's been off the steroids for a while. Another is with her Rhuematologist on the 8th. I believe we will be talking about another medication for Ayla. Her jaw still seems to bother her so i'm not sure if she's still needing something else or if the injection we give weekly is enough. Her bloodwork and the MRi from March (that should be read properly from sick kids by now) should show something that will make this more clear. The other follows up on Ayla's femur break (the first one from last summer). The break was right in the growth plate so the Orthopedic Surgreon wanted to check it now that it's been a year and make sure it's on the right track. Also, could i ask for prayers about giving Ayla her injections? I've been doing it on my own since Ryan has been gone (with a very helpful big brother holding his baby sisters hand) and today proved to be the roughest poke yet. She starting to really fight back and it makes it more painful for her...i'll talk to her doc about it when we go next week also. Thanks in advance.
I was very blessed and had an opportunity (thanks to some very kind annonymous person/people) over this past weekend to go and visit Ryan out in Calgary. I was there for 3 sleeps (can you tell i have kids?). We had a nice time together and were able to visit some friends of ours that live out there. The kids had a great time with Ryan's parents. I'm very thankful they could watch them as i've never been away unless the kids have been with Ryan...and never for a whole 3 sleeps! The last night was very bittersweet. Some of you know that we aren't sure when Ryan will be home again. It was anticipated it would be the end of this month (June) but a contract he had to come back to was broken and he has no work here. So as of right now he will stay out west (as long as they will have him) until something comes up back here. This is very heart breaking for us all...especially the kids. My heart aches for them...and for myself also... and for my husband who is very lonely. We miss him very much. He is such a good husband and daddy we just desperately want him here with us. We (Ryan and I) understand that the will of God isn't always what we want...and while that's hard, it's even harder for kids that don't know why Daddy can't be home. Before i left, i told the kids (with all kinds of guilt) that i was going to see Ryan. Ezra looked up at me with his blue eyes and paused..."I want to come with you and see him." I just started to cry and said, "i know baby."
We pray every night that daddy would be home soon and we also thank God for taking care of us all when we can't be together...hopefully this will be over soon. Ezra actually said to Ryan last week, "Dad, can you find work here at like and ice cream shoppe or something??" If only things were that simple...
Something opened up here in Windsor about a week ago. Ryan has applied. We just have to trust the promises of God that whatever happens, we are loved, we are taken care of, we are strong enough whether he's here or there.
Thank you God for holding us up and providing for us always...
Thank you you all for your thoughts and prayers. We are very thankful that so many of you continue to lift us up and keep us in your thoughts. We are so thankful for all of you.
God Bless.
Lacy

Ayla 5-30-11

Good sunny day to you all! Hopefully everyone is drying out from the rain! The kids and I were in New York visiting my family last week and the weather was really good other than one day. Then yesterday i'm driving home and WHAM! humungo storm and a very creepy sky! Thankfully we got home safely just after the rain had stopped in time for me to unpack the car.
We also had Ryan home for a visit the 18-23rd. We had a nice time having him here. It was all great except for when he arrived back in Calgary and the keys to his truck were here on the key hook. AHHHH! So i had to overnight the keys out to him and a very kind co worker picked him up at the airport and then brought him back. God is good....even when your husband forgets his car keys in another province!
Anyways, onto Ayla. Shortly after the last update i had a meeting with Ayla's care team here at her therapy center/preschool. The first thing we talked about was...if she makes friends or plays. Ryan and i noticed a while ago, she doesn't play with other kids. Talk to other kids. Engage in any sort of story telling or play unless she is attached to an adult. Whether its me, Ryan, a teacher, or Ezra. It was about an hour and a half of trying to figure out what was wrong and what we all could do to encourage her. There are many other factors that makes this very evident as well...but too many to list. Basically they said that developmentally around 18 months to 30 months is when children begin to play together and learn "friendship" skills. That was the time Ayla was very sick. She couldn't play and was confined and basically learned that she was to be afraid or stay away from other kids. Fear?? One thing that still rings in my head was, "she doesn't seem to have any joy." Which Ryan and i knew. We gotta work really hard to get a smile, none the less a laugh. But it's really hard to hear someone else say that. What part is her personality?? Who knows. I keep reminding myself that she is who God made her. Fearful, shy, reserved, whatever. If she changes then that's only God's will. Not ours.
There were a few people in our small group i shared this with right after (and family). And low and behold, the next day she was in school when i went to pick her up, the teacher said, "we saw rainbows today!! She was playing with the other kids and talking and telling everyone all about her new tadpole!" (His name is Ting Ling...he's an Amercian Toad...just like me. Well the American part. Not the toad.) She even told a boy "no" when he pulled her hair instead of crying and running for a teacher. She sang during circle time and pretended to make cookies with other children! Praise the Lord. He is soooo good.
It's so hard for us to know how much to protect her...so i'm sure it's hard for her to know how much to protect herself. But sometimes you just gotta "let go and let God..." Like all the time. It's usually way better than what we want anyways.
Attached is a picture of Ayla and Ryan and Ezra and Ayla. Lots of smiles and joy:)
God Bless.
Lacy

5-11-11

Greetings all of our hopefully sun kissed friends! I hope everyone is enjoying a few clear sunny days of spring. We've had quite a few in a row here! Which means the grass is growing and the flowers are beautiful!
Earlier this week i was feeling very defeated by my weed trimmer...actually trimmers. I went out to mow on a beautiful sunny day and my electric trimmer would not work. So i got out Ryan's high power John Deere Gas power trimmer and realized i have no clue how to fill it with gas and oil. A neighbor helped me figure it out. Then i realized i had no idea how to start it. Another neighbor helped me start it. After about 5 minutes, Ezra needed me, so i shut it off. Then i could NOT get it restarted! My neigbor came over once again...and i'm quite sure i flooded the engine. So he had a look at my electric one and low and behold, it started! Anyways, i wanted to share that with you b/c i was feeling very frustrated and angry...at the weed trimmer. Right?? Wrong! It's just one of those things that sends us over the edge. Thankfully i realized it before those trimmers got the best of me and sent me into tears.

Anyways, onto Ayla. She is doing well. I did finally hear from her specialist shortly after i sent the last update a few weeks ago. Apparently, she WASN'T on holiday. Her secretary was. When i called the secondary secretary, she never answered the phone and her voice mail box was constantly full. Apparently she "knew" about the jaw pain but thought it was just mild and didn't contact us. Finally when her secretary came back, she called to schedule an appointment for us in July and i said, "i really just need to talk to her doctor right now." A few minutes later the doc phoned us. After a lot of back and forth and letting her know how very frustrated i was and how serious the "mild" jaw pain was, she said, "Well you know how very rare this disease is, so it's hard for us to know whether it was a flare up or not. I'm not really sure what we could do." Long story short, she sent us a requisition for blood work, which we had done last week. She's also supposed to send a dictacted letter as to what her instructions are to a care provider if this happens again. This included ultrasound of the area and lots of lab work. I have yet to recieve it...hopefully it's coming.

They are still waiting for her MRI's to be read at Sick Kids in order to send them off for government approval for the other medication for Ayla. Which we were very much undecided we would go with, but if the jaw stuff is indeed a flare up, maybe Ayla needs something stronger. This would be a monthly injection done at the doctor on top of the injections we give at home.
Ayla is doing well. I meet with her "team" at Therapy Center this week and we are going to talk about what the next steps are for her physically.

This week Ayla was able to ride her trike down our driveway (slight decline)! I was so proud of her! You should have seen the grin on that face!

Some things are still very evident to where she falls behind. Like when kids are running at the playground, she tries desperately to keep up, but just can't. I can tell she's getting frustrated. By the time she catches up, they are onto something else. And as i'm typing this i'm hoping that this doesn't become a metaphor for her life, always trying to catch up. God's plan is the best plan...and he has a plan for good. So i'm sure she is now and will always be right where He wants her. It's up to us (the people that love her) and as she grows, herself, to rely on someone much more powerful than ourselves, to put her where she needs to be.
I guess that is relavant to all of us in our lives. To embrace the plan God has for us and to do good with it. For He is good.

I had the opportunity this past week to speak at a womens event, along with 5 other great women, at our church to 150 mothers, daughter, sisters...women. I was so happy to share some of what we have learned and now "treasure" (we were to share the treasures of our hearts) through our journey thus far with Miss Ayla:) It was a very blessed night and though i was pretty nervous, i think it went well. I also had a great opportunity to help with a dramatic reading at our church at the 2 services on Mothers Day. Four women, with different mothering journey's, shared "Before I was a Mother..." Some of you may recognize this from a "Forward" on the internet, but it was rewritten to be specific to the women reading. Once again...I was very nervous but so happy to be used.
God is so good and i'm so glad that i could share with others to encourage, inspire, and lift up.

Ryan is still away in Calgary. He is able to come home for a short visit next week. We will be so happy to see him. Ezra's been struggling a bit with him being away so it is very timely. He's doing the sleep walking thing he was doing last year and stuttering asking for Ryan to come and snuggle...
Ryan is doing well out there and has connected with a few people at his work and at the Alliance Church in High River and we are holding up okay too. Thanks be to God.

That's all for now! Enjoy the sunshine...and your weed trimmers!

Lots of love you all,
Lacy

4-27-11

Happy rain week everyone! Happy spring!
I hope everyone had a great Easter. The kids and I attended a great Good friday service. Four churches in the area did a large combined service that the kids and I really anjoyed. Then we went to Ryan's parents in Sarnia and spent Easter weekend with them. The kids had fun decorating eggs and egg hunting and Ezra even played his first game of street hockey at their house! He was so excited! (Too all my American family...street hockey is one of Canada's favorite things...you know, other than ice hockey:) ). Ryan has found a church out west that an Alliance Church like we attend here. He really enoys it and for that we are grateful.
Anyways, onto our girl. Ayla's jaw pain is mostly gone. Once in a while the last week or so, she will say it hurts. When i ask her she says it hurts a little bit all the time. It still bothers her lots when i brush the side of her mouth that the inflammation was in. We still haven't talked to her specialists (even though they were supposed to back from holidays on April 14th, they still aren't back). But the pediatrician that she saw the 2 times at the hospital really thinks it was a flare up of her Eosinophylac Facciitis and a completely seperate viral infection that was causing her fevers. I'm very frustrated with her care team right now...they have left no back ups in place at all. I guess it's God will, so we have to accept that and hopefully will get this figured out soon.
Her PT's and OT's are still seeing some inflammation even though she's been done the steroids for over a week now. They are also thinking that she's lost weight...which could very well be b/c she could hardly eat anything for those 2 weeks unless it was mush. So she's either grown taller and seems skinnier or the weight just isn't on. She is very very small, as many of you know. It's a mild concern of her team (if in fact we ever talk to them again). Her OT is going to start weighing her on the same scale every thursday while she's at school. That way it's a consistent scale. When she is weighed at docs/hospital it is never the same scale and they never seems to be even close to eachother. One week she weighed in at 10.6kgs and 3 days later 11.4 and then 2 days later 11kgs...so someones scale is wrong:) She eats like a crazy person so if she doesn't start growing tall or wide soon...i'm not sure what is going on!
Anyways, we are meeting with her OT's and PT's and her preschool teachers this week to assess what the next step is for her. She's come so far, thanks be to God. But we aren't sure if things are at a stand still now as far as her ability/development...so we will talk about that.
We have been outside lots already this year! In between showers:) This year Ayla is able to walk through the grass on uneven ground pretty well! If you don't remember, even in the fall last year Ayla couldn't walk in grass b/c of the depth and uneveness. She's even climbing the little ladder up the slide in the backyard without my help (little booger, this year i'm going to have to keep a close eye on her, we don't want anymore stunts that cause broken legs this summer!) So she's trusting herself more and we are trusting her more. At some point you have to find a balance in the protection and letting her be a little girl. WE have to trust God's protection and will over ours.
That is all for now! Enjoy the sunshine in between the rain drops!
Blessings on you all!
Lacy

Ayla-jaw pain

*Ayla started having pain and swelling that was virtually uncontrolled on friday. All of her docs are on holiday and we were struggling to find one. Here is the update* By the grace of God (and being blessed with a truly great friend...many actually) we were able to get Ayla in to see a pediatrician today. Someone who hasn't seen Ayla before but none the less is pretty confident that what Ayla has in her jaw is a flare up of her disease (EF). Hopefully when her specialist is back on the 13th we will be able to get in touch with her quickly. The doc today put her on heavy steroids (prendisone that she was on before)...with tears in my eyes i agree'd it was the only way for right now. I'm thankful that the drug works so well but i truly despise it...it does so many bad things in exchange for good. The Lord knows what she needs so i trust it will all be okay and whatever happens He will guide us... So the steroids are for a week including a taper off. So it's not long, just very large doses. She can only take tylenol for pain which doesn't really do much, but hopefully soon the pain will subside. She is very restless, cranky, tired, sad, etc. She needs a good nights sleep for sure at this point:) And so do I:) I need to say as frustrated as i get and weary, God is always faithful and i'm thankful that there is always a morning and everything is seen in a different light. God has really given me some major patience these last 2 days with very little sleep, a sick girl, a missed husband, a busy boy, and all else that comes with this life. I'm thankful for that (and i think the kids are too). Thank you for thinking of us. Thank you for praying for us. Thank you to listening to me vent. Thank you for loving us all. Lacy PS i'll send something out in a week or so and let you all know how she's doing. PSS Ryan is about a little more than half way i think out to Alberta.

Ayla update 3-30-11

Happy Spring everyone!!! I apologize for it being so long since the last update. When i look back i think the last one i sent was on February 23! A lot has happened since then! As of yesterday Ayla's hairline fracture was cleared by her xray. It's all healed and so well that they can't even see where the break was, lots of new bone growth! Thank the Lord for that! Ayla has been walking on it since about 2 weeks into the break. She had a lot of pain those rist 2 weeks, but after that she was fine. March has been a month full of doctors appointments. Thankfully we have family that help:) Ayla had a bone mineral density test 2 weeks ago and also met with her rhuematologist the same day in London. The test went really well, very quick and painless. Ayla gets more and more brave and used to all this each time. Another thing to be thankful for. The rhuematologist was concerened with the pain Ayla was having in her jaw in Jan/Feb. She was upset that no one contacted her after i took her to our pediatrician multiple time. She wanted to have Ayla's MRI doen on that area also, as well as her legs, but only had a week to try and get it changed before the actual MRI...WHICH WAS FINALLY SCHEDULED! It's only been since november:) The actual reason for the MRI is for so that the report can get sent to the government to see if they can get approval to try Ayla on another drug. They can't actually see Ayla's disease on and MRI (only skin and muscle biopsy), so that part i'm a bit confused on. Other than that the rhuematologist said that she thought Ayla's skin felt "better" than last time. Which to me would mean that the injections we are doing are certainly helping... Ayla also saw the Endocrinologist a week after her Bone Mineral Density to go over the results. They said "normal" is -2 to +2. They is -1.8, so the low end of normal. If it's -2 or lower they medicate to try and force the bones to grow. Because she's within the normal range and she's been off steroids for a bit, they do'nt want to do the medication. They will do another BMD in a year and compare those ones to these and hope to see more improvment. But, if the fractures keep happening as they have been (3 in the last 9/10 months) they will need to try the medication. She also has grown 4.5cm in the last 6 months! Woohoo! Praise God! She's still super tiny and no growing much in weight, but anything is good. Ayla finally had her MRI last thursday. She was sedated and all went very well. It was an anastatist that we've seen before and are very fond of. He remembered us well and his resident was excellent and very good with children. It took quite a long time which is funny because she's so little...she was in there for almost 2 hours just for hips and jaw. When she came out she woke up fairly quickly and enjoyed some slushies and lots and lots of food. Like i said, yesterday she had her final xray on the most recent break and that is the final appointment this month! 7 in a month is too much and i'm glad it's not like that all the time! Physically she is still doing very well, with some limitations still. Someone pointed out to me recently, which is something we've thought about lots, "she won't be able to play sports or dance or those types of things will she??" Well, maybe not. But maybe. God has surprised us thus far with all that she's able to do despite the complete loss of mobility and muscle mass, joint rotation, 3 broken legs, chronic pain, etc, just over a year and a half ago. So maybe she won't and maybe she will. Ryan and I were both always into sports and so is Ezra, so if she can't it will be a bit foreign for us, but God will help us. Ayla loves music so maybe that's something we'll have to experiment with:) We will do our best for follow the lead of the Lord and what His plans are for our little family and our little girl. Ayla did not sleep well last night. She's not feeling right today either. She can't pin point or explain what is wrong. No fever, just fatigue and general irritability. Sometimes i can't help but think, "oh no, now what?" This is something i read just this morning: "Joshua’s life was unpredictable and full of unknowns much like yours and mine. Yet, he successfully resisted fear by keeping his focus on God rather than the events surrounding him. Just as God guided the Israelites through unknown territory, He will guide you and me, too. As He promises in Isaiah 43, when we come to a place we’ve never passed through before, God is always present to help us. “When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the LORD, your God, the Holy One of Israel, your Savior” (v.2-3a, NIV)." "Yet, he successfully resisted fear by keeping his focus on God rather than the events surrounding him," I will do my best to remember this each and every day. Thanks for all your thoughts and continued prayer! Lots of love and blessings! Lacy PS-Ryan has been seeking work basically since he's been on in December. So far, there are many things pulling us in many directions. We are trying to find the right path and right now more things keep coming up and not one more concrete than another. If you wouldn't mind sending up a prayer for work for Ryan, it would be ever so appreciated. PSS- If you remember a while ago, i was talking about a little girl the same age as Ayla running and playing at the McDonalds playground?? Well this past weekend my nieces birthday was at a McDonalds. guess what?! Ayla was able to climb into the lower tunnel to the first slide and go down by herself:) Praise God for the little things! You should have seen the smile on her face.

It's broken.

Ayla did in fact fracture her left femur. They are not going to cast it, as it would have to be a full body cast or the thing that they made for her before. It's not bad, so they said as long as she stays off it, it should be better in a few weeks. She goes back in 4 for xrays.
Sometimes i'm not sure how to feel. Whether i should feel defeated, indifferent b/c this is way of life now, or thankful that's it just such a small break...i think i feel a little of those things at the same time.
God is good. Yesterday i heard on the radio someone talking about seeing the good in your/someone close to you suffering. How it may be hard to see when it's going on, but if you made a list, how many of the bad things would have good come out of them, and how most of the list would probably have something good come out. They said that when we get to Heaven, we will be able to see that good came out of every single trial because we will be able to see how many people we touched in the distance.
I think Ayla's list is very long for a 3 year old. But i also thing she's got a good start on showing the good to people around her.
Lots of Love and thanks,
Lacy

Possible break

This morning we got a call from a friend that happens to be a NP at the ER in Leamington Hospital (where Ayla had her xrays). She told me she double checked the report and said there is a possible fracture in the femur.
She sent the report to the pediatrician who we saw this morning. She sent us for more xrays and gave us a referral to the fracture clinic for tomorrow morning bright and early (6am). She isn't sure if there is anything there, if they will cast it, brace it, etc and then check it again in a few weeks. She did take a few steps on it today, but she can't twist it or bare lots of weight on it...we shall see.
Ezra's ears are really bothering him. He was up in the night crying. They are full of fluid. We had him at the doc yesterday and they gave us a flush told him to chew gum and talked about tubes in his ears. GRRR This is the first ear problem he's ever had, let's not jump to surgery so fast. He goes back tomorrow and then i'm taking him to a chiropractor to see if they can get the fluid to drain with an adjustment.
Anyways, that's all for now. I'll let everyone know how tomorrow goes. Thank you for your prayers!!!!
Lacy

She's 3!!!

Hi everyone! So Ayla's birthday was yesterday! She's 3!!!
Some of you know that we went to Florida on the 12th and just returned home today. We went with Ryan's parents, his brother and sister in law and our 2 nieces, soem friends of ours and their 2 kids. 14 of us total.
It was fun. Lots of highs and lows...Ayla was sick (as were most of the kids) and feverish for most of it but enjoyed parts. We went to Disney 2 days and to the Kennedy Space Center and did lots of swimming. We tried to take Ayla to a doctor for her fever and congestion after a few days, but it was a bust, no one would listen to her heart beat b/c of her medication/pre existing condition until we went to a specialist clinic which was just $300 to see the doctor for 5 mintues. We knew we were coming home today and so we just figured if she was still ill, we'd stop at a clinic or ER on the way home.
We did a breakfast with Cinderella and all the pincesses on Tuesday. It was really cool but very sad for us. Ayla was not feeling well and was miserable and crying (and she loves the princesses). Her and i sat and cried...i felt so sad that my little girl was once again suffering. And it was like a knife pain to watch all the other little girls soaking up every moment of the excitement. I desperately wanted my girl to have a better birthday...
The people there were very kind (especially our waitress, Lynn...God Bless her) and brought her a picnic lunch, some little extra treats, a card signed by the princesses saying they hoped she felt better soon, an extra 8x10 booklet of our group and the castle. and they cleared it with the manager that if later in the day if she felt better, she could come back and meet all the princesses. Later on she still didn't want to go back, but she was feeling a bit better. When we reminded her that we would not be back soon, she agree'd quickly to go and see them before we left. Ezra and Ryan even came too (Ezra liked it, but he'll tell you differently...hehe). We met them all and got pictures with them also. They were all just great and we were so thankful for them going above and beyond...
Then yesterday (the day before we left...feels like ages ago already and Ayla's actual birthday!!!!), Ayla fell and twisted her leg behind her. Again. She cried and cried and then settled but still didn't want anyone to move it or even try standing or walking. So, just to be safe, when we got home tonight we went straight to the ER in fear of another broken leg. (Lots of prayer went on last night about that darn leg...)
It's not broken! Thanks be to the Lord! They did xrays and couldn't see anything wrong. Maybe a pulled muscle or sprain. If it's not better in a day or 2 we have to go back in case it's hairline...something so small it's hard to see. THey are having the radiologist check it over in the morning.
So, we are home now. Everyone is in bed and i'm off there soon myself. 5:30am wake up calls, a long flight, getting pulled into secondary at customs, and then off to the ER...WHO NEEDS DISNEY LAND?!?!?
Another birthday come and gone for our girl without any sense of what a "regular 3 year olds" birthday would be like. Our waitress at Disney happened to have a daughter who was disabled and she said, in such a kind, loving, english accent, "this isn't for them...it's for us. It's what WE want for them. It's much easier on them than it seems to be on us because of what WE want for them. Kids are resiliant...they are special like that." And once again i thought about Gods plan for Ayla. God's plan is not my plan....it's not what i want....it's what she/i/we needs. It's so much greater than we could ever imagine. I'm so thankful that He carries me when i just can't seem to stand anymore. When i don't want to stand anymore. I'm even more thankful that He carries my girl...and our whole family.


I have to say, later that same day of the princess breakfast, we saw a little girl about Ayla's age that had cancer. She was bald from her chemo and had a make a wish badge on and so happy to be there....she was so beautiful and i'm sure God put her there to put things into perspective for me.



I also wanted to add quickly that Ayla is still having some pain her in mouth. I can't remember who i told about this. It's been going on a few weeks now. It's mostly better. They think it's maybe a joint in her jaw, TMJ, but no one is sure. Her PT's and OT's have been working on it.
Thanks!
Lots of Love!
Lacy

Ayla 1-23-11, never say never

Hello everyone!
I hope you all are enjoying the winter! I do not like the cold and the time it takes to get in and out the door, but the kids love it:) We have been sledding and skating and those parts have been fun for everyone. Ayla has really enjoyed it and we are so thankful. I'll send a couple pictures of her with this. When we went sledding it was hard for Ryan and i not to be in a panic, "what if she falls off?" But she never fell off and she laughed and screamed with joy every single time and did not want to leave when it was time. As for skating, she only last about 2 minutes on the ice with Ryan holding her up, but it was something she's been wanting to do since last year. She went on the ice with her little hockey helmet, a mini hockey stick (just like big brother), and a big smile on her face. Praise God for the little girl He made.
As some of you know, Ayla had an MRI finally scheduled for the 12th. We took her in, gave her the oral sedative, and it did not work. Our little girl would not go to sleep for her MRI, despite a very large dose and a very small little girl. A friend of ours who works in a different part of the hospital said, "The Lord must know she didn't need it today." So that's what i keep in mind, instead of the frustration. Ayla will now need a general anastetic for her MRI. She has an appointment in London this week with the anastatist, so that when they squeeze her in, we won't need to do that first. We are on a cancelation list for the MRI.
This week Ezra and I were playing at McDonalds while Ayla while we were waiting for Ayla to finish school. There was another little boy and girl the exact same age as our kids. And the little girl also goes to the John Mcgivney Center (school Ayla goes for therapy)! She goes there for speech therapy. One thing we've never needed for Ayla. So while i sat and watched them play i thought, "look at that girl run and climb, and when she falls she gets right back up. Ayla probably will never be able to do that." WHY DO I DO THAT TO MYSELF? If she never is able to do that, the Lord never intended for her to. It was never in her plan. Many other things are. Good and acceptable and perfect things, just for her. It's funny the ideas we get in our heads of the way things are "supposed" to be instead of how they are. Funny thing is, that day when we went to pick Ayla up, her Occupational Therapist told me that Ayla climbed the ladder on the wall with very little help. She was a "mountain climber." The therapist commented on how strong her arms are getting to be able to hold herself on. An hour earlier i was thinking, "probably never" and then how things change. We can never say or think never. It's our of our hands.
I bet this spring she'll be able to climb the slide in our backyard again, just like she was able to before all this happen, when she was only 18 months old.
Thanks for your love and support everyone!
God Bless.
Lacy

Ayla update 1-1-11

Happy New Year everyone!
No one in this house stayed up last night! Kids went to bed early and Ryan i couldn't make it much past 11pm. I woke up thankful to be home in our own beds. This time last year we were in the hospital and Ayla was in surgery first thing thing in the morning. Praise God for all the trials and blessings this last 365 days.
I hope you all had a Merry Christmas. We spent it in New York with my family and then came home and had another Christmas on the 27th and we are anticipating another Christmas on the 8th. Lots of food and fun. For those of you that know about the Hewitt Tradition of joke presents, you can guess just how much fun:) The one on the 8th will be even more joke presents with lots of laughter. (I really should send some pics of the funny things we get/make one another...) Anyways, this was a joyful Christmas for our family. Ayla and Ezra had so much fun opening gifts and playing with their uncle and cousins. Ayla was happy and healthy and running and playing and laughing like this last year didn't make a lick of difference in her little life. We took a moment to sit back and really appreciate that. Thank God.
Anyways, Ayla had an appointment on the 17th which was the last time i sent an update. I think we were also still waiting on the MRI, WHICH STILL HAS YET TO BE SCHEDULED. Ayla has a new doctor in London who was going to put in a req to see if we could just get it done in london instead of monkeying around here any longer. We shall see. Nothing much was done. We met the new Rhuematologist that is going to follow Ayla regularly with visits twice a year to Sick Kids in Toronto to see the lead Rhuematologist there. Nothing much was said or done. No mention of improvment but nothing is worse. The new doctor is trying to get a handle on all that has happened. I was a bit frustrated...i guess just because she hadn't gone through the file and was trying to "show" me how smart she was. Hopefully our impression will change as we get to know her better. We will miss Ayla's old doc but it will be nice to keep in touch a couple times a year and through email. She really worked so hard for us even with all the bumps in the road.
They are still wanting to try Ayla on another medication, the trial one. They use in along with the med she is on now for kids with rhuematic deseases and scleraderma (spelling???) and it works well. But it's never really been used for Ayla's disease. There are some side effects but they seem to be counteracted using it with the other medication. There also is some link to malignancy, but they are pretty sure that's because of the rhuematic disease itself, not the medication. Other than that, they don't know when they will get approval. Hopefully, when we go back she will be better and won't need any more medication on top of what she has now.
Oh, actually Ayla gained a bit of weight finally!!!! Around a pound...different scales at different places but for sure some weight gain! Woohoo!
Injections seem to get harder each week. She fights more and more now that she knows what is coming...
She's been off therapy/school since before Christmas and will go back on tuesday.
I keep watching her and can't believe how much better she's doing. Mobility wise...she's running and playing. She is loving playing in the snow this year. But there are little things i notice that still aren't right...the little things they have been working on for a long time that i'm not sure will come...maybe she would benefit from a new medication... But only the Lord knows.
Anyways, i hope you all have a happy new year and thank you all for following Ayla's updates and your continued prayer for her and our family.
God Bless!
Lacy