Overall update since October 2009

November 24,2009
Ayla started not feeling well on October 13. She didn’t seem right before that, she wasn’t sleeping well and was very clingy, but I thought it was just teething b/c she wsa getting 6-7 teeth all at once. On the 13 I still wasn’t very worried but I know I made a note about her not being write and this teething thing was carrying on…
I called our doctor on the 19th to get her in but they didn’t have an opening until the 23. So we went in and saw a doc about her (not our fam doc), it was a terrible experience and he misdiagnosed her with another childs chart. I left unsatisfied and with an even more miserable child. He said she didn’t have an infection anywhere…but in case she got one he sent me home with antibx that I didn’t use.
I went back on the 29th, and the doc said she was either just getting or just getting over an ear infection. She gave me antibx but told me not to use them unless it got worse and her fever spiked again (at this point her fever only seemed to be low 99-100 and was gone for a day or so). So she didn’t have a fever that weekend (24/25/26) and her fever came back but still low. I was doing some homeopathic ear drops that seemed to be helping for a couple days. Then the next weekend (31/1) we filled the script just in case she had an infection and to be done with it. She seemed ok for a day or two, no fever 2/3, then on the 4th the fever came back. We were still doing antibx so this was strange. At this time she was also seeming very sensitive to touch. Especially in her legs, so we thought just aches and pains to do with infection.
I called the doc and went back in.. She agree’d this was not right and ordered a urine sample and an xray for her legs.
She called me Thursday after we did the xray and urine an ordered bloodwork b/c everything else came back clear. Friday we did the bloodwork.
Monday doc called and said WBC was up. I began marking down all things with Ayla, dry skin, not sleeping, sensitive hands/legs,arms, grumpy, would not climb on/off the bed, walking funny, would not play the same, nursing all the time, most of these going on since the beginning. She referred us to a pediatrician.

November 25,2009
Ayla was admitted for 5 days for further testing by the pediatrician.

Swelling started (well we noticed swelling) while in the hospital around November 26th. It got a little better before we left the hospital to almost non extistent. Monday the 7th, we went back and did more blood work, still the same as when we were discharged. Some swelling but very minor. On Motrin 3-4 times a day since we left on the 30th. No fever since the Monday before, November 22. On the 7th we filled a script for Naproxen and Predenisone. She had one dose of each before bed. She slept 3-4 hours straight without waking (she hasn’t done that since before she was ill). In the AM they called and told us to take her off the Pred but increase Nap to 5mls. She still had some swelling and she also fell down 2 times which I brought up at the Thursday 10th appt. She can hardly bare weight on her legs sometimes and has a very difficult time walking. Worse in the last week than it has been ever. She fell 2 more times over the weekend of 12/13. Her legs just seem to give out on her. She cries when she stands or when she walks most times. If she does walk it’s very unsteady and painful for her. She will not wrap her legs around me when I carry her, as it hurts her now. When she stands, her knees are always bent and wobbly. We have felt a bubbling/grinding sensation in her knees. She is in more pain now than she has been since she fell ill. She is still sleeping terribly, miserable during the day, in pain almost all the time. It’s very difficult to dress her or even touch her without her crying. We took her swimming on Wednesday the 16th and the loved the water. She was holding hands, jumping while in the water. As soon as we tried to get her to jump in off the side (which she loved to do before), she couldn’t bare any weight at all on her legs. Bum changes are still difficult.

12-18-09
So we took Ayla to see the Rhuematologist in London today. She does in fact have arthritis. They aslo think something else may be going on as well. They do not want to treat her for arthritis until everything else is cleared. The treatment could mask other illnesses. Tuesday the 22 she has to go and have bone marrow drawn to check for cancer. They ran more blood work today and things just aren't adding up. She was also saw by the Ped. Hematologist today as well (with the Rhuem) and he agree'd that she should have her marrow checked and some other things.

12*22*09
NO CANCER AFTER A BONE MARROW biopsy, thank God.

12-29-09
Ayla was readmitted for further testing. They still aren't convinced it's just arthritis.
12/31/09
Ayla had her ct scan and mri this morning. It went terribly. her sedation wore off before they started and it wouldn't take efect again after. People were getting very angry and pushy...so i pray they got the images they needed. She is supposed to be seen for a skin biopsy and by a dermatologist sometime today as well. She is very groggy and not feeling well. Her IV was an issue as well. They have a hard time getting one into her so it's torchure for how many times they have to poke her. PS (i also have a very terrible painful toothache and can't see a dentist until after the holiday)1/1/10Ayla had a skin and muscle biopsy today. We won't have the resutls back on that until next week. They started her on a treatment last night until we see the Rhuematologist in Toronto on WED. The procdedure this morning went way better tahn yesterday and she's doing just fine now. Wide awake:)
WE ARE HOME TODAY!! They gave us a "pass" to go. We have to go back for IV meds once a day but other than that we are home. We aren't discharged but it's better than nothing. We have to go to TO (sick kids) on WED.

1-1-10
she has not walked since 12/18. She has lost 5 pounds.

1/2/10
This morning we woke up to a bloody mess all over where Ayla's biopsy site is. We were so concered with not tugging her IV port we hadn't payed much attention to it since it wasn't bleeding yesterday at all. We dressed quick and got right to the hosp. They changed it all and called the plastic surgeon to see what was the proper amount of bleeding. Apparently this could go on for a couple days...she's saturating the gauze bandages they gave us....If it's still like this tomorrow i will call the resident back. Up side is she had her final dose of IV steroids today so she was discharged. Her swelling has gone almost back to normal, which so strange to see her like this. I almost forgot what normal limbs of her looked like my poor wee girl. I think she lost even more than 2 pounds...the fluid was making up for quite a bit. She's down to around 21lbs from just over 25. They sent us home with 3 different meds which i have no idea how we are going to get into her. 35mls we have to manage to get into her everyday. Steroid, stomach pills, and pain/inflammation relief. the 10mls we were doing were tough enough. Anyways, at least this are beginign to get under control. Praise God for that. Rhuematologist at sick kids in TO on wed. On a side note, the antibx the ER doc gave me....i'm allergic to it. I have a big red/hot rash all over my torsoe and spreading. This time next year i better be laughing about this!

1/6/10
Ayla's appointment went fine today. NO POKING for her today!They are fairly sure she has eosynophylic facitis (sp?). She doesn't have Rhuematoid Arthritis, BUT the doc said the symptoms and treatments are almost the same. It effects her joints as well as muscles and her layer of fat. It is a very rare disease so they had a photographer take pictures of her limbs to document change and for teaching. She has to go back into MET the next 4 days for more IV steroids in outpatient. Also more bloodwork. More pokes for our wee girl. I'm hoping that after the first day that i can just get someone to come to our house to do the treatments. We also are going to have to take her to physio. We should hear back tomorrow about when we shall start that. It's going to be a long road to get our walking, running, climbing girl back but Praise God we are on our way to treating her instead of just watching her suffer. Thanks so much for all the love and prayers once again. There are people all over the world praying for her and i can't explain how loved we feel. We go back in 2 weeks to see the same Doc when she comes to London Childrens.
1/7/10
Today we got back from Toronto. We had to go to back to MET hospital for Ayla to have some more steroid treatments. She needed 4 more IV treatments b/c all the swelling had not gone away. They had a tough time again getting her IV in. It's just agonizing for her to have to keep getting that done. We/they arranged for CCAC to send a nurse to do her treatments at home the next 3 days. They usually don't do it for such a short time but i explained that she just needs to be at home resting. She's had enough running around and they agree'd and were more than willing to help. Praise God for that.
They also removed her sutchers from her biopsy site which is healing well.
We are hoping that we here about when we can get started with physio soon. We don't really know what lies ahead but God is good and he is taking care of all of us.

1/10/10
Hi all,
Ayla finished her IV treatments today. We heard back from the Rhuematologist. We will see her again on the 29th. We will hopefully be starting physio this week. We have to do lots of stretching at home which is pretty painful for her right now. I asked about recovery and they really aren't sure because there aren't lots of kids to compare with, but they are hoping for a full recovery. They don't know how or why she got eosinophilic fasciitis. http://www.medicinenet.com/eosinophilic_fasciitis/article.htm
She is very happy to have her IV locke out! Although she kept saying "mine!" when the nurse was taking it out. We celebrated by going out to play in the snow. She's been dieing to go swing in the backyard. So we got her all bundled up and took her out She is getting her appetite back and is eating lots. She'll be packing on that lost weight in no time.


This morning at church we were called up to the front with Ayla. The elders and pastors prayed over her and anointed her as is says in:
James 5:14-15 says, “Are any of you sick? You should call for the elders of the church to come and pray over you, anointing you with oil in the name of the Lord. Such a prayer offered in faith will heal the sick, and the Lord will make you well. And if you have committed any sins, you will be forgiven.”

1/14/10
We heard from the Childrens treatment/physio place today. They weren't going to be able to see us until the 26th, but after speaking with her and explaining how long Ayla has been like this they pushed it up to the 19th. Her initial assesment will be that day at 9:45. She will be assessed by an occupational therapist, a physio therapist, and a speech therapist. This is the intake team kids see reguardless of their issue.
Also, yesterday we were very thankful to recieve tons of meals from the MOPS (Mothers of Preschools) group. The hot meals program at our church has been helping us as well:) We are very blessed:)

1-19-10
We saw the physio team for intake today at the childrens treatment center in windsor. They were very honest in saying in 31years they have not seen this disease or anything with an onset quite like this but they are very willing to learn and help in any way they can.
They gave us some more ideas on things to work with Ayla on. Stretching they felt might be a bit much for now as they were worried about tearing something, so gave us some other things to do do that will work in a similar respect but will be easier on her. They also gave us a bath chair so she can spend more time in the tub and be comfortable, she was not before. They also suggested we get our baby equipment back out; like our excersaucer and jumparoo and see if she is interested in those.
One of the women will be coming to our house on Tuesday to be a fly on the wall and assess Ayla in her own environment to try and figure out what things she likes and how they can adapt them to be more fun and encourage mobility/movement for her.
They also gave us some information on Assistance for Children with Severe Disabilities and Disability tax credits. So we will get those filled out by us and the Dr. we see next friday and get them sent in.
Today was good. But it was very hard to explain to them where she was before all this and where she is now. I try not to think about all the things she used to be able to do because it's very emotional for me. Hopefully someday she'll be able to do all those things again...
Ryan said last week, "we get 2 first steps."

1-20-10
Today i recieved an email from ayla's rhuematologist. This is a section from it:

"We can discuss more at your appt next Friday – but if Ayla is not showing some improvements over the coming weeks (or months), then I would very seriously consider an inpatient rehabilitation stay – unfortunately I believe the only really good inpatient rehab place for kids is in Toronto. This would not happen quickly, so we have lots of time to discuss. I would recommend this if she is not getting ‘enough’ PT and OT to make improvements. In other words, I would push for an inpatient stay so that Ayla has access to several hours of therapy every day – including pool therapy. The wait list is long, so even if we wanted this to happen quickly, it likely would take several months. We can talk much more about this next week."

I just can't imagine this happening. Please please pray for Ayla to respond well to the therapy and show some improvement. This email brought tears...i can't bear to even think of this. I know all of you are praying and i just wanted to give an update to show what they are thinking the next steps may be. I am going to call the Childrens Rehab place here in Windsor tomorrow and tell them about this so that hopefully we can get in more time. They also think she will be on the steroids and another med for quite a while together. Steroids are so bad for kids...especially wee ones.
Please continue to pray for our girl.