A few weeks ago Gwyneth began a new school year of pre-K at a new elementary school with new teachers. She was transferred from our previous school because a new special education pre-K class was created at the elementary school that we are zoned for. So she is now at the school where she can continue into Kindergarten and through Fifth Grade. I think the transition has been much harder for me than for her. I had developed a rapport with the teachers from the last year and a half, but now all the new teachers and therapists will have to get to know Gwyneth and myself. Gwyn is riding the bus again in her wheelchair. I really hope she will be walking and out of the wheelchair by the end of this school year.
The other new beginning that Gwyneth will be experiencing this month is starting hippotherapy at the Farm on Tuesdays. We don't have therapy on Fridays anymore. We are going to OT and PT on Tuesday afternoons and Speech on Saturdays with our Speech therapist from last year. I thought we might be able to start hippotherapy today, but it looks like it will be next Tuesday when Gwyn will get up on a horse for the first time. She will alternate weeks, riding the horse with her OT one week and her PT the next week. They will work on different skills and building different muscles each week. It might take her a while to warm up to the horses, but I'm really excited for this new chapter in Gwyn's therapy.
Tuesday, August 21, 2012
Friday, June 15, 2012
Friday at the Farm: Ready for Vacation
Today was our last Friday at the therapy center for the month of June. On Tuesday, my mom and I will fly back to Colorado with the kids and I'll stay for 3 weeks.
To keep up with Gwyneth's therapy, here's our "homework" right now for each area:
For Speech Therapy, we are trying to get Gwyn comfortable with some oral motor stimulation which is like a massage around her mouth. The therapist has suggested trying an electric toothbrush or something that vibrates.
For OT, I'll be bringing Gwyn's therapeutic listening headphones with us to continue that program.
For PT, I am bringing the kids swimming gear with the hopes that we can have some time in a pool. Also, we found a wonderful resource in Colorado: a place that sells used adaptive equipment for a very low price. We bought a pediatric reverse walker like the one Gwyn uses at home. So she will have that to walk around with at my parent's house.
Looking forward to a great vacation!
To keep up with Gwyneth's therapy, here's our "homework" right now for each area:
For Speech Therapy, we are trying to get Gwyn comfortable with some oral motor stimulation which is like a massage around her mouth. The therapist has suggested trying an electric toothbrush or something that vibrates.
For OT, I'll be bringing Gwyn's therapeutic listening headphones with us to continue that program.
For PT, I am bringing the kids swimming gear with the hopes that we can have some time in a pool. Also, we found a wonderful resource in Colorado: a place that sells used adaptive equipment for a very low price. We bought a pediatric reverse walker like the one Gwyn uses at home. So she will have that to walk around with at my parent's house.
Looking forward to a great vacation!
Thursday, June 7, 2012
Test Results and Conversations
We have received the results of all the tests they did from the blood drawn two weeks ago. Everything is good! Gwyneth is negative for Celiac, the Thyroid panel was in normal range, and the Chromosomal tests confirmed Trisomy 21 but did not show any other genetic issues. So we have checked those things off our list to think about for now.
Before her surgery, Reid took Gwyn to the pediatric neurologist to have another X-ray done of her spine so she could be cleared for anesthesia. Last July, her C-spine X-ray showed possible Atlanto-Axial Instability which puts her at risk for a spinal cord injury. So activities such as gymnastics, hippotherapy (horseback riding), and being put under general anesthesia can be dangerous because of the risk to her spine. But good news: this recent second X-ray showed that the gap between vertebrae was small enough that the neurologist said her activities do not need to be limited. We are so excited that hippotherapy and maybe gymnastics could be in her future.
Gwyneth is now back to "normal" again after her tonsil surgery. We have not been back to therapy yet, but we are going tomorrow. She is better than normal really because she seems very active and much more vocal. Reid noticed very soon after the surgery that her voice seemed easier to understand. I think she is talking more in general, but she also seems to be enunciating better. I don't know if this is related to her tonsils and part of her adenoids coming out, or if it is coincidence. But with all of the new speech happening, we have been having some very cute and funny "conversations" with her:
Gwyn (waking up): "Go school today?"
Mommy: "No, there's no school today."
Gwyn: "Okay, watch George" (meaning: Allright, I'll just watch the Curious George show!)
Mommy (just before dinnertime): "Gwyn, do you want to eat some vegetables?"
Gwyn: "Mmm hmm, chicken dip-dip ketchup" (meaning: Yes, and chicken nuggets to dip in ketchup)
Gwyn mentions something about "School" (doing the sign language for School)
Mommy: "Gwyn, do you like school?"
Gwyn: "Yes"
Mommy: "What do you do at school?"
Gwyn (thinks for a few seconds): "Paint!" (adding the sign for Paint)
(At the grocery store check-out)
Check-out Girl to the kids sitting together in a cart: "Hi there"
Ryker: "Hi!"
Gwyn: "Hi, wanna play?"
Check-out Girl (laughing): "No, I can't play right now"
Each of these conversations was so unexpected and funny to me because she said words or concepts that I'd never heard her say before. "Ketchup" and "paint" are definitely new words, and we've never even talked about painting at school. She has been saying "Okay" and "Yes" a lot over last two weeks to answer questions and she really hadn't been doing that much before. And asking a stranger a question like "Wanna play?" is so surprising. I'm looking forward to reporting all of this to her speech therapist tomorrow who hasn't seen Gwyn in 3 weeks.
Before her surgery, Reid took Gwyn to the pediatric neurologist to have another X-ray done of her spine so she could be cleared for anesthesia. Last July, her C-spine X-ray showed possible Atlanto-Axial Instability which puts her at risk for a spinal cord injury. So activities such as gymnastics, hippotherapy (horseback riding), and being put under general anesthesia can be dangerous because of the risk to her spine. But good news: this recent second X-ray showed that the gap between vertebrae was small enough that the neurologist said her activities do not need to be limited. We are so excited that hippotherapy and maybe gymnastics could be in her future.
Gwyneth is now back to "normal" again after her tonsil surgery. We have not been back to therapy yet, but we are going tomorrow. She is better than normal really because she seems very active and much more vocal. Reid noticed very soon after the surgery that her voice seemed easier to understand. I think she is talking more in general, but she also seems to be enunciating better. I don't know if this is related to her tonsils and part of her adenoids coming out, or if it is coincidence. But with all of the new speech happening, we have been having some very cute and funny "conversations" with her:
Gwyn (waking up): "Go school today?"
Mommy: "No, there's no school today."
Gwyn: "Okay, watch George" (meaning: Allright, I'll just watch the Curious George show!)
Mommy (just before dinnertime): "Gwyn, do you want to eat some vegetables?"
Gwyn: "Mmm hmm, chicken dip-dip ketchup" (meaning: Yes, and chicken nuggets to dip in ketchup)
Gwyn mentions something about "School" (doing the sign language for School)
Mommy: "Gwyn, do you like school?"
Gwyn: "Yes"
Mommy: "What do you do at school?"
Gwyn (thinks for a few seconds): "Paint!" (adding the sign for Paint)
(At the grocery store check-out)
Check-out Girl to the kids sitting together in a cart: "Hi there"
Ryker: "Hi!"
Gwyn: "Hi, wanna play?"
Check-out Girl (laughing): "No, I can't play right now"
Each of these conversations was so unexpected and funny to me because she said words or concepts that I'd never heard her say before. "Ketchup" and "paint" are definitely new words, and we've never even talked about painting at school. She has been saying "Okay" and "Yes" a lot over last two weeks to answer questions and she really hadn't been doing that much before. And asking a stranger a question like "Wanna play?" is so surprising. I'm looking forward to reporting all of this to her speech therapist tomorrow who hasn't seen Gwyn in 3 weeks.
Thursday, May 24, 2012
Recovering at Home
Gwyneth did really well staying overnight at the hospital Monday night. She had an IV drip all night and it gave her a good head start towards staying hydrated while she recovers from the tonsillectomy. I woke up when the nurse came in during the night to help with giving Gwyn her pain medicine and change her diaper. After she was awake Tuesday morning, she was in very good spirits and talking, singing, and counting just like her old self. Reid brought Ryker back to hospital before he went to work. Gwyn was discharged and the kids and I headed home.
Since we've been home, things have been going fairly well. Gwyn is drinking sips of pedialyte or apple juice and eating a little bit of food. She gets fussier when her pain med is wearing off, so I'm just keeping up with the schedule of pain medication every four hours even through the night. It's tough getting up at night to make her take the medicine though (it's like being on a newborn's schedule again!) so I stretched it out to over 5 hours between doses last night and she was fine. I'll probably stretch it out more tonight so we can both get more sleep and we'll see how she does.
Supposedly Days 5 to 8 post-surgery are really tough because the scabs start to come off of the throat and it is more painful to eat and drink. So this weekend could be a challenge. But Gwyneth is very sweet when she's not feeling good and she just wants to be held all the time. So we are relaxing together in front of her favorite shows with a sippy cup while Ryker crawls around and makes a mess. :-)
Hope our sweet girl is back to 100% soon!
Since we've been home, things have been going fairly well. Gwyn is drinking sips of pedialyte or apple juice and eating a little bit of food. She gets fussier when her pain med is wearing off, so I'm just keeping up with the schedule of pain medication every four hours even through the night. It's tough getting up at night to make her take the medicine though (it's like being on a newborn's schedule again!) so I stretched it out to over 5 hours between doses last night and she was fine. I'll probably stretch it out more tonight so we can both get more sleep and we'll see how she does.
Supposedly Days 5 to 8 post-surgery are really tough because the scabs start to come off of the throat and it is more painful to eat and drink. So this weekend could be a challenge. But Gwyneth is very sweet when she's not feeling good and she just wants to be held all the time. So we are relaxing together in front of her favorite shows with a sippy cup while Ryker crawls around and makes a mess. :-)
Hope our sweet girl is back to 100% soon!
Monday, May 21, 2012
Surgery Day
Today was Gwyneth's tonsillectomy & adenoidectomy at Children's Healthcare of Atlanta Scottish Rite hospital. Overall, she is doing really well. The surgery was scheduled for 9:20 a.m. so we had to arrive at the hospital at 7:20. We talked with various nurses, the surgeon, and the anesthesiologist before the surgery. They gave Gwyneth a codine type drug to relax her before they took her away to the OR. And she got a little bit loopy and cute, smiling and giggling at nothing.
The surgery went very well. They only had to remove part of the adenoids, not all of them, which is what we were hoping in order to avoid speech/voice issues. They checked her ears and there was no fluid so we don't have to worry about tubes. While she was under, the nurses drew blood for various lab orders we brought along. I don't like having her blood drawn unless it is absolutely necessary so this was a great chance to take care of blood work that I've been putting off like Celiac and thyroid tests. I'll post again when we get all of the results for those tests.
When Gwyneth was waking up in her recovery room after the 30 minute surgery, they gave her the doggie security blanket she brought along and that made her very happy. Then they brought her to the overnight room where Reid, Ryker and I were waiting. We took turns holding her and she was being very sweet. She even started to sip apple juice for us. Ryker fell asleep in his stroller when I walked through the hospital to get lunch from the cafeteria and he slept a while.
The afternoon was hard because Reid had to leave to go to work, Ryker woke up from his nap very hungry and Gwyn's pain medicine had begun to wear off. So the next few hours I spent balancing between fussy kids. Luckily there are TVs in the hospital rooms with lots of kids channels, so that kept Gwyneth distracted occasionally. She had stopped wanting to drink apple juice so she was put on an IV drip (which is attached to a vein in her foot). At some point she decided to pull off the pulse ox monitor from her thumb and strip off the hospital gown. She has also been telling the nurses "All DONE" before they even start their checks of her vitals. (That reminds me: this morning just before the surgery, a nurse came by and asked "are you Gwyneth?" and Gwyn quickly responded "nope!" - we laughed that she was saying "nope, not me lady, keep walkin")
Ryker was understandably fed up with the whole boring day, so I decided to leave Gwyn alone in the room to give Ryker a break and give Gwyn a chance to nap. We walked around and went outside to a koi pond for a few minutes, but I was worried about Gwyn, so we didn't stay away too long. When we returned Gwyn had thrown her pillows and covers around and didn't look happy. She wasn't thrilled with Ryker back in the room though because he was getting very loud and fussy and I could tell that she was super tired. Reid came to the rescue and left work early to pick up Ryker to take him home for the night.
Gwyn perked up after that and the nurse suggested I order some dinner for her, but by the time dinner arrived she was cranky again. After she got more pain medication and ate a little applesauce and a few bites of chicken soup with rice, she started to fall asleep. She's been sleeping soundly for a while now, and even slept through the nurse checking her vitals. They will have to wake her up at 11 p.m. and 3 a.m. for more pain medication, so it will be a tiring night... We plan on being discharged in the morning as long as she is drinking and eating.
More updates tomorrow...
The surgery went very well. They only had to remove part of the adenoids, not all of them, which is what we were hoping in order to avoid speech/voice issues. They checked her ears and there was no fluid so we don't have to worry about tubes. While she was under, the nurses drew blood for various lab orders we brought along. I don't like having her blood drawn unless it is absolutely necessary so this was a great chance to take care of blood work that I've been putting off like Celiac and thyroid tests. I'll post again when we get all of the results for those tests.
When Gwyneth was waking up in her recovery room after the 30 minute surgery, they gave her the doggie security blanket she brought along and that made her very happy. Then they brought her to the overnight room where Reid, Ryker and I were waiting. We took turns holding her and she was being very sweet. She even started to sip apple juice for us. Ryker fell asleep in his stroller when I walked through the hospital to get lunch from the cafeteria and he slept a while.
The afternoon was hard because Reid had to leave to go to work, Ryker woke up from his nap very hungry and Gwyn's pain medicine had begun to wear off. So the next few hours I spent balancing between fussy kids. Luckily there are TVs in the hospital rooms with lots of kids channels, so that kept Gwyneth distracted occasionally. She had stopped wanting to drink apple juice so she was put on an IV drip (which is attached to a vein in her foot). At some point she decided to pull off the pulse ox monitor from her thumb and strip off the hospital gown. She has also been telling the nurses "All DONE" before they even start their checks of her vitals. (That reminds me: this morning just before the surgery, a nurse came by and asked "are you Gwyneth?" and Gwyn quickly responded "nope!" - we laughed that she was saying "nope, not me lady, keep walkin")
Ryker was understandably fed up with the whole boring day, so I decided to leave Gwyn alone in the room to give Ryker a break and give Gwyn a chance to nap. We walked around and went outside to a koi pond for a few minutes, but I was worried about Gwyn, so we didn't stay away too long. When we returned Gwyn had thrown her pillows and covers around and didn't look happy. She wasn't thrilled with Ryker back in the room though because he was getting very loud and fussy and I could tell that she was super tired. Reid came to the rescue and left work early to pick up Ryker to take him home for the night.
Gwyn perked up after that and the nurse suggested I order some dinner for her, but by the time dinner arrived she was cranky again. After she got more pain medication and ate a little applesauce and a few bites of chicken soup with rice, she started to fall asleep. She's been sleeping soundly for a while now, and even slept through the nurse checking her vitals. They will have to wake her up at 11 p.m. and 3 a.m. for more pain medication, so it will be a tiring night... We plan on being discharged in the morning as long as she is drinking and eating.
More updates tomorrow...
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