I forgot to mention that Ayla gained about 2.5lbs back of the 5/6 she lost:) She is looking much for happy and healthy...:)
We have an appt on Thursday for physio to get her "plan" started.
Sunday, January 31, 2010
Saturday, January 30, 2010
Ayla's appt 1-29-10
So yesterdays appointment went pretty well. Any appt where we don't get admitted is good:)
Ayla's layer of fascia is still swollen under her skin. The Rheumatologist gave us a script to fill for a drug called Methotrexate, which will help with this. It's traditionally given in large amount as a cancer med, but they have used it for years in small doses for RA and other similar diseases. It is given by mouth or injection once a week. We are going to try orally first, but sometimes oral has side effects like sores in the mouth, upset stomach, fatigue. It is filter through the liver so they will have to monitor liver/kidney function as well as any increase or decrease in the amount of cells at least once a month for a while through a simple blood test. If we have to go to injection we can do it outselves, it's much like insulin. It takes about 6-12 weeks for it to take full effect so in a few weeks we will start weaning her off the prednisone slowly until she is only on the methotrexate (and prevacid & naproxen).
She also is going to get the ball rolling on the inpatient rehab center in Toronto just in case we need it. She said that they would do 6 hours of physio solid per day. I would be able to stay...not sure what the boys would do...but God will figure it out for us. She said her goal for Ayla is a full recovery, she isn't sure if that will happen but that's her "goal." She still says she doesn't know how long she'll be on medication or how long until she is "better." But we already knew that.
While we were there a "friend" stopped in to say hello. One of our residents from Windsor happened to be there and saw Ayla's name on the schedule and just "had" to come down and see us:) She is also learning about this disease from behind the scenes and thinks about Ayla lots.
I have to stay in touch through email with the Rhuem over the next few weeks to keep a handle on how/if the methotrexate is working. We will see her again in 6 weeks for a follow up and more bloodwork.
That's all for now.
Thanks for everything!
God Bless.
Lacy
Ayla's layer of fascia is still swollen under her skin. The Rheumatologist gave us a script to fill for a drug called Methotrexate, which will help with this. It's traditionally given in large amount as a cancer med, but they have used it for years in small doses for RA and other similar diseases. It is given by mouth or injection once a week. We are going to try orally first, but sometimes oral has side effects like sores in the mouth, upset stomach, fatigue. It is filter through the liver so they will have to monitor liver/kidney function as well as any increase or decrease in the amount of cells at least once a month for a while through a simple blood test. If we have to go to injection we can do it outselves, it's much like insulin. It takes about 6-12 weeks for it to take full effect so in a few weeks we will start weaning her off the prednisone slowly until she is only on the methotrexate (and prevacid & naproxen).
She also is going to get the ball rolling on the inpatient rehab center in Toronto just in case we need it. She said that they would do 6 hours of physio solid per day. I would be able to stay...not sure what the boys would do...but God will figure it out for us. She said her goal for Ayla is a full recovery, she isn't sure if that will happen but that's her "goal." She still says she doesn't know how long she'll be on medication or how long until she is "better." But we already knew that.
While we were there a "friend" stopped in to say hello. One of our residents from Windsor happened to be there and saw Ayla's name on the schedule and just "had" to come down and see us:) She is also learning about this disease from behind the scenes and thinks about Ayla lots.
I have to stay in touch through email with the Rhuem over the next few weeks to keep a handle on how/if the methotrexate is working. We will see her again in 6 weeks for a follow up and more bloodwork.
That's all for now.
Thanks for everything!
God Bless.
Lacy
Thursday, January 28, 2010
ACTS 3:1-9 (from Ryan)
Ryan (my husband) found this in a book of his and showed it to me tonight...thought i would share it.
1Now Peter and John were going up to the temple at the hour of prayer, the ninth hour.a 2And a man lame from birth was being carried, whom they laid daily at the gate of the temple that is called the Beautiful Gate to ask alms of those entering the temple. 3Seeing Peter and John about to go into the temple, he asked to receive alms. 4And Peter directed his gaze at him, as did John, and said, “Look at us.” 5And he fixed his attention on them, expecting to receive something from them. 6But Peter said, “I have no silver and gold, but what I do have I give to you. In the name of Jesus Christ of Nazareth, rise up and walk!” 7And he took him by the right hand and raised him up, and immediately his feet and ankles were made strong. 8And leaping up he stood and began to walk, and entered the temple with them, walking and leaping and praising God. 9And all the people saw him walking and praising God, 10and recognized him as the one who sat at the Beautiful Gate of the temple, asking for alms. And they were filled with wonder and amazement at what had happened to him.
ACTS 3:1-9 ESV
1Now Peter and John were going up to the temple at the hour of prayer, the ninth hour.a 2And a man lame from birth was being carried, whom they laid daily at the gate of the temple that is called the Beautiful Gate to ask alms of those entering the temple. 3Seeing Peter and John about to go into the temple, he asked to receive alms. 4And Peter directed his gaze at him, as did John, and said, “Look at us.” 5And he fixed his attention on them, expecting to receive something from them. 6But Peter said, “I have no silver and gold, but what I do have I give to you. In the name of Jesus Christ of Nazareth, rise up and walk!” 7And he took him by the right hand and raised him up, and immediately his feet and ankles were made strong. 8And leaping up he stood and began to walk, and entered the temple with them, walking and leaping and praising God. 9And all the people saw him walking and praising God, 10and recognized him as the one who sat at the Beautiful Gate of the temple, asking for alms. And they were filled with wonder and amazement at what had happened to him.
ACTS 3:1-9 ESV
Wednesday, January 27, 2010
1/27/10
1/27/10
Ayla is doing pretty well. She has been enjoying her jumparoo and excersaucer and has even pushed herself around a little on her ride on car. God is good. We had a person from the physio team come to our home on Tuesday and observe Ayla. She thought she was already showing some improvment from last tuesday. We see the physio team again next Thursday and they will have a scheduled plan in place for Ayla at that time.
This Friday Ayla has an appt in London with her Rheumatologist at noon. We aren't sure what is going to happen at it, but we think they are going to start talking about more prescription meds and see if she is improving at all and possibly talk more about an inpatient rehabiliation center, in case we need it in the future. I have accepted that and if that's God's will...then that's what it is. We will also be having the Doc fill out forms for some assistance physically and financially.
Ezra is doing okay. He wasn't sleeping well for few nights and tells Ayla, "you need to share mommy," sometimes during the day. He's holding up alright but doesn't understand quite what's going on as much as we try and explain it.
I will let you know what happens Friday and thank you so much for all your kindness.
God Bless you all,
Lacy
Ayla is doing pretty well. She has been enjoying her jumparoo and excersaucer and has even pushed herself around a little on her ride on car. God is good. We had a person from the physio team come to our home on Tuesday and observe Ayla. She thought she was already showing some improvment from last tuesday. We see the physio team again next Thursday and they will have a scheduled plan in place for Ayla at that time.
This Friday Ayla has an appt in London with her Rheumatologist at noon. We aren't sure what is going to happen at it, but we think they are going to start talking about more prescription meds and see if she is improving at all and possibly talk more about an inpatient rehabiliation center, in case we need it in the future. I have accepted that and if that's God's will...then that's what it is. We will also be having the Doc fill out forms for some assistance physically and financially.
Ezra is doing okay. He wasn't sleeping well for few nights and tells Ayla, "you need to share mommy," sometimes during the day. He's holding up alright but doesn't understand quite what's going on as much as we try and explain it.
I will let you know what happens Friday and thank you so much for all your kindness.
God Bless you all,
Lacy
Friday, January 22, 2010
Thursday, January 21, 2010
1-21-10
1-21-10
I took Ayla to swim today. The physio people and rhuem. agree that water therapy will do wonders which is why they got us a fancy bath seat thinking she'd be more comfy in the tub and spend more time in there. (she hates it but they gave me some more suggestions with it today).
I spoke to them today about my concerns from what the Dr. said. Her words were, "well we can't just let that happen now can we?" She said that water therapy a few times a week, we will see them twice a week (once Ayla gets used to being touched), baby massage, bath time, mayo fascial massage, use of old baby equipment, and just helping her over come the fear as well. She said Ayla basically has Post Traumatic Stress much like people that go to war. It's a pretty firm barrier for her so the more fun the better.
Ayla is loving her excersaucer and jumperoo and spend lots of time in them and can push a little bit in each. The physio was very impressed that she took to it so quick.
She is pushing off with her feet a little bit. She is also lifting her legs to kick in the pool and reaching further with her arms. She loves play dough and her tea set the most of all. Ayla is also learning her colors. She knows pink, blue, yellow, and orange most of the time and some others are hit and miss. She also holds a marker the correct way. I like to look at the things that are all 'normal' as well. It helps:)
I took Ayla to swim today. The physio people and rhuem. agree that water therapy will do wonders which is why they got us a fancy bath seat thinking she'd be more comfy in the tub and spend more time in there. (she hates it but they gave me some more suggestions with it today).
I spoke to them today about my concerns from what the Dr. said. Her words were, "well we can't just let that happen now can we?" She said that water therapy a few times a week, we will see them twice a week (once Ayla gets used to being touched), baby massage, bath time, mayo fascial massage, use of old baby equipment, and just helping her over come the fear as well. She said Ayla basically has Post Traumatic Stress much like people that go to war. It's a pretty firm barrier for her so the more fun the better.
Ayla is loving her excersaucer and jumperoo and spend lots of time in them and can push a little bit in each. The physio was very impressed that she took to it so quick.
She is pushing off with her feet a little bit. She is also lifting her legs to kick in the pool and reaching further with her arms. She loves play dough and her tea set the most of all. Ayla is also learning her colors. She knows pink, blue, yellow, and orange most of the time and some others are hit and miss. She also holds a marker the correct way. I like to look at the things that are all 'normal' as well. It helps:)
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.
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.
My wee Ayla
Someone suggested that i start a blog for others to keep track of Ayla's journey with EF.
For those of you who don't know what that is here is a link:
http://www.medicinenet.com/eosinophilic_fasciitis/article.htm
http://www.aboutef.com/faq%5B1%5D.html
This disease has taken a lot away from our little girl but by the grace and strength of God she and we will get through this. She has lost her ability to be mobile in any way. She went from walking at 9.5months to totally incapapble of mobility at around 21/22 months.
I will try and keep those who follow updated and we are so very appreciated of love, support, and prayers.
For those of you who don't know what that is here is a link:
http://www.medicinenet.com/eosinophilic_fasciitis/article.htm
http://www.aboutef.com/faq%5B1%5D.html
This disease has taken a lot away from our little girl but by the grace and strength of God she and we will get through this. She has lost her ability to be mobile in any way. She went from walking at 9.5months to totally incapapble of mobility at around 21/22 months.
I will try and keep those who follow updated and we are so very appreciated of love, support, and prayers.
Subscribe to:
Comments (Atom)
