Good evening everyone!! Thank the Lord that tomorrow is Friday...this has been a busy week.
Tuesday Ayla saw a "bone doctor" in London. Ryan was able to meet us there. They said that they are sure that it's the steroid that caused her bones to become so weak and brittle. They also have basically stopped any kind of growth in the last 9 months. She will be off the steroid tuesday and things should pick back up. We go back in 6 months for a bone mineral density test and follow up, to make sure things are going back to normal. They cleared her to do anything she wants to at Physiotherapy.
Wednesday Ayla had a pre op for her dental surgery which was rescheduled to the 8th. We were there a long time, the one day i do'nt get a sitter for Ezra...the doctor goes out on a call for while. Anyways, he was very kind when he got back and had a nice long chat with Ezra about whales. So it ended up to not be so bad.
Today Ayla had an allergist appointment reguarding her corn allergy. She isn't anaphalactic, which we knew. She has a delayed response. We go back the end of November for a patch test to see how delayed and how severe. Until then, we continue to avoid corn.
Ayla's leg is doing well. It's very tight and she's still walking like she has the cast on. The PT said the doc didn't cast her properly even though i specified her instructions, he did the "i know what i'm doing." Not understanding that there is a reason... She's walking with her leg turned out, so somehow we have to get her to turn it in.
She's as happy as all get out though. We went swimming this week and she loved it. I was thinking today...how much she's changed or hasn't changed. A lot of people told us when she was sick, "she'll never be the same again. She'll always be quiet and never the same happy girl." I was always confident no matter if that happened or not, she would be who God made her to be. Today, i took a moment and thought while playing with her, "this is who you are. You are a smart, funny, silly, playful, talkative, crazy little girl...with a little bit of shy stuck in there. This is just it...you never changed.
She is perfect...
Thank the Lord for that.
Lacy
Thursday, September 30, 2010
Tuesday, September 21, 2010
Ayla-3 more days!
Hi everyone!
Ayla is doing well. Three more sleeps until she gets her purple cast off! Friday is the day. Tonight we were talking about how nice it will be to have a bath in the real bathtub, not on the kitchen counter:)
Today she was supposed to have an appt for just a check up with her pediatrician, when we got there for some reason it shows she never had an appt at all. Even though they called me to tell me about it. So once we again we get jerked around because of someone elses error and have to go back friday after we get her cast off. I'm trying to take it all in stride but at times feel like Ayla and I are rag dolls, just tossed around for whoever and whenever is conveinient.
Next tuesday Ayla got in to see the "bone doctor" in London. I'm not sure whether it's good or bad that she got in so quick when it was supposed to take "several weeks." I will just consider it an answer to prayer that we wouldn't be waiting long. She will likely have more bloodwork when we are there.
I am hoping to get her in to see her Rhuematologist soon b/c in 2 weeks she will be off her steroid (praise God!!!!) and i want to make sure she's handling being off it okay. That trip will take us to Toronto b/c the earliest they can see us in London is Mid/end November. At this time they are going to try to get hr seen by a dermatologist as well to check the parts of her skin that are still stiff/thick/hard and make sure it's just scarring and not her disease still not under control.
I am disappointed at the rigamarole we have been through to try and get bloodwork to Ayla's naturopathic doctor. I have been trying to get her a copy of Ayla's bloodwork to see if she has any suggestions on how to get Ayla to better absorb the supplements and it's seeming near impossible to get them to her, none the less to have them release them to me. I think i might have got someone who will make me a photocopy...Thank the Lord for that.
Last week we were away in New York visiting my family. We had a nice time. We also went camping and spent a day at Marineland in Niagra falls. The kids had a blast and Ezra even got to feed the Beluga Whales! We also stopped in Grimsby and had a nice visit with some missed family:)
Things are going well. Ayla is happy and having fun all the time.
We saw a friend today that hasn't actually seen her walk on her own since this time last year. We have seen her but it's been at intervals when she was just begining to move again holding hands, wheelchair around, the 1st cast that didn't allow her movement, and now... She saw her walk today and said, "I can't believe she is walking...it's been over a year since i've seen her do that." She gets around like nothing hinders her at all. Thank the Lord for that. When she gets that cast off...look out world:)
Thanks for all the support from my last update. I emailed a friend a few days ago and this is the best way i can describe how i feel, 'Most days are easy and i rest in the hands of the Lord. Once in a while, i have a day that i feel like, 'FOR REAL, HOW MUCH MORE?' And those days feel impossible to overcome. But then i wake up...and it's a new day and i feel like it's not so impossible.'
Lots of Love!
Lacy
"God will Never let you sink under your circumstances. He always provides a safety net and His love always encircles." -Barbara Johnson
Ayla is doing well. Three more sleeps until she gets her purple cast off! Friday is the day. Tonight we were talking about how nice it will be to have a bath in the real bathtub, not on the kitchen counter:)
Today she was supposed to have an appt for just a check up with her pediatrician, when we got there for some reason it shows she never had an appt at all. Even though they called me to tell me about it. So once we again we get jerked around because of someone elses error and have to go back friday after we get her cast off. I'm trying to take it all in stride but at times feel like Ayla and I are rag dolls, just tossed around for whoever and whenever is conveinient.
Next tuesday Ayla got in to see the "bone doctor" in London. I'm not sure whether it's good or bad that she got in so quick when it was supposed to take "several weeks." I will just consider it an answer to prayer that we wouldn't be waiting long. She will likely have more bloodwork when we are there.
I am hoping to get her in to see her Rhuematologist soon b/c in 2 weeks she will be off her steroid (praise God!!!!) and i want to make sure she's handling being off it okay. That trip will take us to Toronto b/c the earliest they can see us in London is Mid/end November. At this time they are going to try to get hr seen by a dermatologist as well to check the parts of her skin that are still stiff/thick/hard and make sure it's just scarring and not her disease still not under control.
I am disappointed at the rigamarole we have been through to try and get bloodwork to Ayla's naturopathic doctor. I have been trying to get her a copy of Ayla's bloodwork to see if she has any suggestions on how to get Ayla to better absorb the supplements and it's seeming near impossible to get them to her, none the less to have them release them to me. I think i might have got someone who will make me a photocopy...Thank the Lord for that.
Last week we were away in New York visiting my family. We had a nice time. We also went camping and spent a day at Marineland in Niagra falls. The kids had a blast and Ezra even got to feed the Beluga Whales! We also stopped in Grimsby and had a nice visit with some missed family:)
Things are going well. Ayla is happy and having fun all the time.
We saw a friend today that hasn't actually seen her walk on her own since this time last year. We have seen her but it's been at intervals when she was just begining to move again holding hands, wheelchair around, the 1st cast that didn't allow her movement, and now... She saw her walk today and said, "I can't believe she is walking...it's been over a year since i've seen her do that." She gets around like nothing hinders her at all. Thank the Lord for that. When she gets that cast off...look out world:)
Thanks for all the support from my last update. I emailed a friend a few days ago and this is the best way i can describe how i feel, 'Most days are easy and i rest in the hands of the Lord. Once in a while, i have a day that i feel like, 'FOR REAL, HOW MUCH MORE?' And those days feel impossible to overcome. But then i wake up...and it's a new day and i feel like it's not so impossible.'
Lots of Love!
Lacy
"God will Never let you sink under your circumstances. He always provides a safety net and His love always encircles." -Barbara Johnson
Thursday, September 2, 2010
Ayla update 9-2-10
Hi friends,
I've been trying to sit down and send an update for the last few days. Finally a moment.
Ayla and I had a long day at the hospital and doctors office monday. She had her anastetia consult, xray and appt for her femur break, and then a pre op appt with her pediatrician.
She was cleared by the orthopedic surgeon for her femur break. She's free to do whatever at therapy now as far as weight bearing goes. He wants to see her in a year to make sure that the growth plate hasn't shifted and all is still well (the break was really near the growth plate). I asked him if he noticed any difference in bone density from June to now and there is no difference. No weaker no stronger from what he can tell.
The other 2 appts for her surgery on Friday went well and quickly. We actually had a pretty good day as dreading it as i was. Praise God for that:)
I heard back from the Rhuematologist about Ayla seeing the endocrinologist in London. She said that he recommended a few more test through bloodwork (which we will get done next week) and then they will call us with an appt for Ayla...which will be several weeks. I'm not very impressed about "several" weeks because we all know that's anywhere from 4 weeks to 6 months. I've been praying and am going to do some pushing on that. She is falling daily and i feel like it's just a matter of time if her bones are improving that something else is going to happen. I pray every day sofr the Lord to cushion her falls.
There isn't any way i can get her not to fall. No amount of hovering will help when she is just tripping over her own feet (much like a toddler does when they learn how to walk). It's just part of the way it is.
Tomorrow (friday) she has surgery on her teeth. It's quite extensive...her teeth are much like her bones. The anestitist (who was so very kind) said he would give her an oral sedative before they brought her down to surgery, so she wouldn't be too traumatized. Ryan and i are a bit nervous b/c last time she had surgery, they "forgot" to come and get us when she was out. We were not impressed when after and hour of a surgery that would take 20 minutes no one had come to get us. Ryan walked right into the OR and said, "where is my daughter?" "oh...she's been out for a while..." So we are going to do what we can to make sure that doesn't happen tomorrow.
Anyway, i guess that's all the update for now. We are praying the surgery goes well tomorrow with no complications and we'll be home in the afternoon.
God Bless you all! Enjoy your labour day weekend!
Lacy
I've been trying to sit down and send an update for the last few days. Finally a moment.
Ayla and I had a long day at the hospital and doctors office monday. She had her anastetia consult, xray and appt for her femur break, and then a pre op appt with her pediatrician.
She was cleared by the orthopedic surgeon for her femur break. She's free to do whatever at therapy now as far as weight bearing goes. He wants to see her in a year to make sure that the growth plate hasn't shifted and all is still well (the break was really near the growth plate). I asked him if he noticed any difference in bone density from June to now and there is no difference. No weaker no stronger from what he can tell.
The other 2 appts for her surgery on Friday went well and quickly. We actually had a pretty good day as dreading it as i was. Praise God for that:)
I heard back from the Rhuematologist about Ayla seeing the endocrinologist in London. She said that he recommended a few more test through bloodwork (which we will get done next week) and then they will call us with an appt for Ayla...which will be several weeks. I'm not very impressed about "several" weeks because we all know that's anywhere from 4 weeks to 6 months. I've been praying and am going to do some pushing on that. She is falling daily and i feel like it's just a matter of time if her bones are improving that something else is going to happen. I pray every day sofr the Lord to cushion her falls.
There isn't any way i can get her not to fall. No amount of hovering will help when she is just tripping over her own feet (much like a toddler does when they learn how to walk). It's just part of the way it is.
Tomorrow (friday) she has surgery on her teeth. It's quite extensive...her teeth are much like her bones. The anestitist (who was so very kind) said he would give her an oral sedative before they brought her down to surgery, so she wouldn't be too traumatized. Ryan and i are a bit nervous b/c last time she had surgery, they "forgot" to come and get us when she was out. We were not impressed when after and hour of a surgery that would take 20 minutes no one had come to get us. Ryan walked right into the OR and said, "where is my daughter?" "oh...she's been out for a while..." So we are going to do what we can to make sure that doesn't happen tomorrow.
Anyway, i guess that's all the update for now. We are praying the surgery goes well tomorrow with no complications and we'll be home in the afternoon.
God Bless you all! Enjoy your labour day weekend!
Lacy
Subscribe to:
Comments (Atom)
