We started this morning weaning Ayla off her prednisone. It's one dose at the same amount as she usually gets in a full day (2 doses). She's been throwing up most of the day.
We jsut gave her some gravol and are hoping it helps. If she continues to throw up then we will have to go to hospital for IV meds and fluid. UGH, PLEASE PRAY SHE DOESN'T.
Friday, February 26, 2010
Thursday, February 25, 2010
Magic Legs and Princess Gloves
I met with ACSD today (assistance for children with severe disabilities) and they are going to provide us with some help:) Praise God:)
Tomorrow we are supposed to start weaning Ayla off her prednisone. It could be achey/slightly painful for her. Hopefully it goes okay.
This morning she let us put on both her "magic legs" and "princess gloves" and didn't even cry! That's a huge step! Hopefully it continues. Yesterday we put them on her and she lost her mind...
She also got to go skating with Ryan today. He pushed her around in her stroller and carried her around a few times and stood her on the ice, she loved it. Next time we are gonig to try and bring her magic legs there:)
That's all for now.
Tomorrow we are supposed to start weaning Ayla off her prednisone. It could be achey/slightly painful for her. Hopefully it goes okay.
This morning she let us put on both her "magic legs" and "princess gloves" and didn't even cry! That's a huge step! Hopefully it continues. Yesterday we put them on her and she lost her mind...
She also got to go skating with Ryan today. He pushed her around in her stroller and carried her around a few times and stood her on the ice, she loved it. Next time we are gonig to try and bring her magic legs there:)
That's all for now.
Tuesday, February 23, 2010
Ayla update 2-23, birthday/phsyio:)
Ayla had her 2nd birthday last thursday the 18th:) She had a party on the weekend and dispite her scowl almost the whole time, she had fun:) We made her a really cool princess cake, she loves Cinderella. For her party we had friends bring gifts to donate to the hospital peadiatric inpatient secret closet. It's a big closet they have full of toys and when a kids having a rough day, tests, or just siblings there for a visit, they get to pick something. They were more than generous during our stay with both Ezra and Ayla, so we wanted to give something back. We got to drop them off yesterday and they were very grateful:)
The reason we dropped them off yesterday was because we took Ayla in to see our Ped. She keeps picking up germs and since she's immune compromised it's such a pain. She has had a cough on and off, mostly at night. But it can keep her (and us) awake. We wanted to see what steps we should follow should she ever pick up something more than a cold. They confirmed what we thought, DO NOT take her to a walk in clinic. We are to call our ped or fam and get her in ASAP, just explain to the sercretary the circumstances. She is fine, cough with post nasal drip. We were hesitantly giving her a cough supressent to take the edge off for her at night. They sent us home with a script for Venolin and an air chamber to use as needed to help loosen up any gunk now or later use. Praise God, they gave us the air chamber in the hospital ($60-$70 to buy) :)
Today she had physio. It went pretty terribly yet again. I so was hoping for another good week, but now they are pushing her. They are sure she doesn't feel pain, it's all emotional. They are no tears just cries and screams the whole time. It's so hard to watch her and try to keep encouraging her. The PT today told us, "she has to do this and she can do it." I know she can and i know she will but it's so hard that she doesn't want to...she just fights it all the way. They got her some leg braces today. They just hold her knees straight so that she can stand. She bared all of her weight today with the braces on. So it's just getting her to do that every day to build up those muscles, "MAKE IT FUN" is what they say....riiiiiiight. So God willing we can figure out a way to make it fun. She will have occupational therapy on friday, we are doing 2 days a week now. PT said her goal was to have her standing for a few seconds on her own by march 12 for her next Rheumatology appt.
It pains me because she must have some want and desire to be able to walk and run and play again. It was so hard at her birthday for her to watch all the other kids going up and down the stairs running and playing...and there she sits, watching. It makes me so sad.
2 steps forward, 1 back i guess.
Thank goodness for the Lord...
I heard something last week at a ladies mornign at church, "there are 2 times to pray: when you feel like it and when you don't." I just thought...wow that sums it up doesn't it....??
That's all for now!
God Bless!
Lacy
The reason we dropped them off yesterday was because we took Ayla in to see our Ped. She keeps picking up germs and since she's immune compromised it's such a pain. She has had a cough on and off, mostly at night. But it can keep her (and us) awake. We wanted to see what steps we should follow should she ever pick up something more than a cold. They confirmed what we thought, DO NOT take her to a walk in clinic. We are to call our ped or fam and get her in ASAP, just explain to the sercretary the circumstances. She is fine, cough with post nasal drip. We were hesitantly giving her a cough supressent to take the edge off for her at night. They sent us home with a script for Venolin and an air chamber to use as needed to help loosen up any gunk now or later use. Praise God, they gave us the air chamber in the hospital ($60-$70 to buy) :)
Today she had physio. It went pretty terribly yet again. I so was hoping for another good week, but now they are pushing her. They are sure she doesn't feel pain, it's all emotional. They are no tears just cries and screams the whole time. It's so hard to watch her and try to keep encouraging her. The PT today told us, "she has to do this and she can do it." I know she can and i know she will but it's so hard that she doesn't want to...she just fights it all the way. They got her some leg braces today. They just hold her knees straight so that she can stand. She bared all of her weight today with the braces on. So it's just getting her to do that every day to build up those muscles, "MAKE IT FUN" is what they say....riiiiiiight. So God willing we can figure out a way to make it fun. She will have occupational therapy on friday, we are doing 2 days a week now. PT said her goal was to have her standing for a few seconds on her own by march 12 for her next Rheumatology appt.
It pains me because she must have some want and desire to be able to walk and run and play again. It was so hard at her birthday for her to watch all the other kids going up and down the stairs running and playing...and there she sits, watching. It makes me so sad.
2 steps forward, 1 back i guess.
Thank goodness for the Lord...
I heard something last week at a ladies mornign at church, "there are 2 times to pray: when you feel like it and when you don't." I just thought...wow that sums it up doesn't it....??
That's all for now!
God Bless!
Lacy
Thursday, February 18, 2010
Birthday!!
My wee girl Ayla turned 2 years old today....
In some ways i can't believe it...in others i'm more than ready:)
We had a good day and she loved singing happy birthday and blowing out her candles:)
Thank the Lord for 2 year olds:)
In some ways i can't believe it...in others i'm more than ready:)
We had a good day and she loved singing happy birthday and blowing out her candles:)
Thank the Lord for 2 year olds:)
Wednesday, February 17, 2010
Praise God Ayla physio went very well yesterday!
They changed her from the occupational therapy room (baby toys and not many people to ditract) to the Physio Therapy room which was busy busy with lots of cool stuff. Ezra was a great distraction today! The PT lady was so glad he was there. His goofyness and running around totally distracted Ayla and she had more fun. Just what we had hoped for last week. They also only had one person at a time, where before it was PT and OT together. She even laughed and played with Laurie (PT) a little instead of crying and scowling:)
All was good until Laurie wanted to put the envelope and try some new things. She said Ayla's knees are way better, so she wanted to if if she could convince Ayla to play at a kitchen. She kind of stood Ayla between her legs supporting her and Ayla didn't really like it at all. She could bare some weight, but wasn't having fun, that's for sure. Then she wanted to see how much weight Ayla could bare while walking supported (we were telling him we've been making her do that a few times a day). She could bare about 50% of her weight for a few steps. We tried it again (Ryan supporting her walking to me) so she could see from the side about how much...her legs were to tired and she could barely put any. BUT SHE IS GETTING BETTER:)
OT (occupuational therapy) brought her braces today. Ezra tried them on as "power ranger gloves." Ayla tried them on as "Princess gloves":) Whatever works. These braces are for her hands, fingers, wrists to help them stretch and straighten. She also got a Bob the Builder one for her elbows she is supposed to sleep with alternating arms...we will see how that goes.
She had swimming last night as well. She went with Ryan and did awesome! She went down the little slide and was floating unassisted on her back in a life jacket while kicking hard enough to make herself move!
What a great day! Praise God!
On a side note, Ayla told her first knock knock joke today:) WE laughed and laughed.
Ayla: Knock knock
Us: who’s there?
Ayla: banana
Us: banana who?
Ayla: Orange-hehehehe
She has heard her brother tell that joke too many times i think:)
They changed her from the occupational therapy room (baby toys and not many people to ditract) to the Physio Therapy room which was busy busy with lots of cool stuff. Ezra was a great distraction today! The PT lady was so glad he was there. His goofyness and running around totally distracted Ayla and she had more fun. Just what we had hoped for last week. They also only had one person at a time, where before it was PT and OT together. She even laughed and played with Laurie (PT) a little instead of crying and scowling:)
All was good until Laurie wanted to put the envelope and try some new things. She said Ayla's knees are way better, so she wanted to if if she could convince Ayla to play at a kitchen. She kind of stood Ayla between her legs supporting her and Ayla didn't really like it at all. She could bare some weight, but wasn't having fun, that's for sure. Then she wanted to see how much weight Ayla could bare while walking supported (we were telling him we've been making her do that a few times a day). She could bare about 50% of her weight for a few steps. We tried it again (Ryan supporting her walking to me) so she could see from the side about how much...her legs were to tired and she could barely put any. BUT SHE IS GETTING BETTER:)
OT (occupuational therapy) brought her braces today. Ezra tried them on as "power ranger gloves." Ayla tried them on as "Princess gloves":) Whatever works. These braces are for her hands, fingers, wrists to help them stretch and straighten. She also got a Bob the Builder one for her elbows she is supposed to sleep with alternating arms...we will see how that goes.
She had swimming last night as well. She went with Ryan and did awesome! She went down the little slide and was floating unassisted on her back in a life jacket while kicking hard enough to make herself move!
What a great day! Praise God!
On a side note, Ayla told her first knock knock joke today:) WE laughed and laughed.
Ayla: Knock knock
Us: who’s there?
Ayla: banana
Us: banana who?
Ayla: Orange-hehehehe
She has heard her brother tell that joke too many times i think:)
Monday, February 15, 2010
Am amazing sermon from our lead pastor and his wife at HPAC. We heard this message at the begining of all this with Ayla...we had no idea how relative it would be. I listened to it again tonight online...
I'm so grateful for our church and Garth and Patty's story... Living with a Broken Dream
http://http//www.hpac.org/index.cfm?i=1647&mid=18&g=2468
I'm so grateful for our church and Garth and Patty's story... Living with a Broken Dream
http://http//www.hpac.org/index.cfm?i=1647&mid=18&g=2468
Wednesday, February 10, 2010
Ayla 2-9-10
Ayla's physio yesterday didn't really go any better than last week. Even with Ezra there. She still screamed and cried the whole time...1 whole hour.
They are fitting her with some splints for stretching at night for her arms, wrists, and fingers and are going to find some for her legs. They are trying to find some there that fit her so we don't have to purchase some (they only make them in the states) or wait for the ones to be made there. If they make them there it will be even less fun for her to go through the fitting and molding and refitting and adjusting. They found some that fit her they just have to modify them a bit.
The PT and OT people decribed it like this, her layer of fascia (the "shiney" part of the chicken skin, after you peel off the outer) is stuck to her regular skin (the part that peels off easily), where they should slide around eachother they are stuck and inhibiting movement in her joints b/c the skin won't stretch easily. They put some special tape over her knees hoping that it would cause the skin to pull and "wrinkle" thus causing the stretching she needs. She was hoping it would stay on for a couple days....but it came off mostly last night in the pool:) So we'll try something else next time.
I was feeling very sad last night. At swimming Ayla had a terrible time. She usually loves it. I think just a hard day for her. It's so frustrating that really....there's nothign we can do to help her...nothing we can do to make it better. Everytime we see someone (Pt, ot, doc, etc) they are giving more advice/suggestions and we just can't seem to contain it all and remember to do it and how and how often. "Don't let her do this, let her do this, make her do this, etc"
It's so overwhelming...and to think last August/september she was running around in the back yard with Ezra...now she can't even roll over! I try not to ever think about how she used to be b/c i don't know if she'll ever be there again. I know this is all God's plan...and i know someday i will look back and have an understanding, but for now....i just don't get it! I am accepting of it most days because i trust the Lord...but it's a struggle once in a while.
That said, she's our little chatter box now. Talking like crazy and she is having many more happy times than before. Most days are fine but excuse her when you come up to her and she says "no!" or gives you a scowl. That's just her personality even before she was sick. She's gaining her weight back, now we have to try and turn it into muscle:)
She is getting bored with our jumperoo and excersaucers now so we'll have to see if we can borrow different ones from friends.
Well we are off to take the kids sledding:)
They are fitting her with some splints for stretching at night for her arms, wrists, and fingers and are going to find some for her legs. They are trying to find some there that fit her so we don't have to purchase some (they only make them in the states) or wait for the ones to be made there. If they make them there it will be even less fun for her to go through the fitting and molding and refitting and adjusting. They found some that fit her they just have to modify them a bit.
The PT and OT people decribed it like this, her layer of fascia (the "shiney" part of the chicken skin, after you peel off the outer) is stuck to her regular skin (the part that peels off easily), where they should slide around eachother they are stuck and inhibiting movement in her joints b/c the skin won't stretch easily. They put some special tape over her knees hoping that it would cause the skin to pull and "wrinkle" thus causing the stretching she needs. She was hoping it would stay on for a couple days....but it came off mostly last night in the pool:) So we'll try something else next time.
I was feeling very sad last night. At swimming Ayla had a terrible time. She usually loves it. I think just a hard day for her. It's so frustrating that really....there's nothign we can do to help her...nothing we can do to make it better. Everytime we see someone (Pt, ot, doc, etc) they are giving more advice/suggestions and we just can't seem to contain it all and remember to do it and how and how often. "Don't let her do this, let her do this, make her do this, etc"
It's so overwhelming...and to think last August/september she was running around in the back yard with Ezra...now she can't even roll over! I try not to ever think about how she used to be b/c i don't know if she'll ever be there again. I know this is all God's plan...and i know someday i will look back and have an understanding, but for now....i just don't get it! I am accepting of it most days because i trust the Lord...but it's a struggle once in a while.
That said, she's our little chatter box now. Talking like crazy and she is having many more happy times than before. Most days are fine but excuse her when you come up to her and she says "no!" or gives you a scowl. That's just her personality even before she was sick. She's gaining her weight back, now we have to try and turn it into muscle:)
She is getting bored with our jumperoo and excersaucers now so we'll have to see if we can borrow different ones from friends.
Well we are off to take the kids sledding:)
Friday, February 5, 2010
A new med for Ayla
We started Ayla on methotrexate last night orally. It's a teeny tiny dose but it's supposed to be very potent. She didn't/hasn't yet had any side effects (fatigue, upset stomach, mouth sores). She slept great last night and has been in a great mood all day:)
Thursday, February 4, 2010
Update 2-4-10
Ayla had her first heavy duty physio appt today. It went all of terrible. She screamed in terror the whole time. Not many tears, just so afraid that it would hurt and totally not liking them touching her. We go back every tuesday for the next month for now. She got a walker built for bigger kids that we call a bike:) Her and Ezra love it.
They are talking about possibly getting some splints for her arms and legs for night time to help her stretch when she is sleeping.
Next week we are going to try bringing Ezra and allowing them to touch him in similar ways and to see that he's okay with it. It's such a cool place! So many cool toys everywhere! It really is a kids haven...if only she could see it.
She enjoys all the swimming we have been doing though. They said today that her hips are in much better shape than last time we were there. So...its coming along.
Yesterday i took her to see an alternative therapy professional. She was recommended from a couple people at our church. This is something we can do on top of everything else. It's about eliminating foods and increases vitamins and mineral to stimulate her body to heal. There are some women at our church that have Rhuematoid Athritis and do this on top of medication and find it works fantastic...so we shall see. I'm worried about changing her diet and everything on top of all else she is going through. So i've just been praying for guidance.
That's all for now...
They are talking about possibly getting some splints for her arms and legs for night time to help her stretch when she is sleeping.
Next week we are going to try bringing Ezra and allowing them to touch him in similar ways and to see that he's okay with it. It's such a cool place! So many cool toys everywhere! It really is a kids haven...if only she could see it.
She enjoys all the swimming we have been doing though. They said today that her hips are in much better shape than last time we were there. So...its coming along.
Yesterday i took her to see an alternative therapy professional. She was recommended from a couple people at our church. This is something we can do on top of everything else. It's about eliminating foods and increases vitamins and mineral to stimulate her body to heal. There are some women at our church that have Rhuematoid Athritis and do this on top of medication and find it works fantastic...so we shall see. I'm worried about changing her diet and everything on top of all else she is going through. So i've just been praying for guidance.
That's all for now...
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