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...

Friday at the Farm: Summer Break

We are gearing up for Summer Break now since Gwyn's last day of school was yesterday! She is having her tonsils removed on Monday so she has to miss the last week of school. I let all the therapists know that she will miss next Friday and we'll see about the Friday after that. I also had to let them know that we will be visiting family and friends in Colorado for almost a month this summer! And when school starts again in August, Gwyneth will be going 5 days a week instead of four, so we'll have to change our therapy times to after school.

It's too bad that Gwyneth has to start the summer off with a painful surgery, but I believe that it will be the best for her in the long run. She had strep throat 8 times in a year and 3 of those times also had ear infections. So her tonsil surgery is early Monday morning and we will keep our fingers crossed that she has an easy recovery. She did so well after her open-heart surgery, but she was only 4 months old. Now she is 4 years old and I'm worried about the emotional impact this painful recovery will have on her.

I will be posting updates through the surgery and recovery of our precious girl.

Friday at the Farm: Whirlwind Week

This week - this whole month - is going by SO fast.

Our Medicaid (Katie Beckett Deeming Waiver) annual renewal application was due today, so I was buried in paperwork all week trying to get it done at superhuman speed. Our application surpassed 100 pages this year. Yikes. Gwyneth has had a very busy year medically, and there is much more ahead in the coming few months...

Today I left Gwyneth at the therapy center while I drove over to the pediatrician's office to pick up the Medicaid renewal paperwork that I had left there for the Doctor to sign. Then it had to be copied and sent off to the Dept of Family and Child Services. It was a whirlwind morning. When I rushed back into the Therapy center near the end of Gwyn's morning, I got the summary of the day from all 3 therapists back to back. She had a great day with all of them: working on trying to blow a pinwheel, trying a new Therapeutic Listening chip in her headphones, and being very energized with the PT activities. The discs/chips in her TL headphones are changed every 2 weeks and the OT determines which chips she will do next to try to challenge her in different areas. Right now the focus is on her vestibular sense and spatial awareness. It is a very good sign that she was so energetic during her PT session (which follows OT) and she was moving around in new ways. They said she was moving her body and arms on the swing which she's never done; she's usually very stiff.

I am so relieved that the Medicaid renewal paperwork is done. This is my third year with the Waiver, and I dread it every time, but it is worth it to get the financial aid to pay for Gwyneth's therapies and extra medical costs.

Coming up: Gwyn is scheduled to have her tonsils & adenoids removed, but there are several doctors visits that need to happen first (mainly: she has to be cleared by the Neurologist because of the AAI possibility). We finally had an appointment at the Emory Down Syndrome Clinic in Atlanta which was so helpful. More details on the Emory Clinic visit, the Neurology appointment, and the upcoming surgery in another post...

Friday at the Farm: iPad Girl

So about a week ago, Reid surprised me with a used iPad2 that he bought from someone on Craig's List.  I have always resisted Apple products, so this is my first i-anything, but I have to admit that I'm really loving it. And I'm proud of my techie husband for buying a used one, since I really don't care about having the latest and greatest thing.

As I was waiting at the Farm during Gwyneth's therapy appointments, I worked (played) on the iPad.  A mom who came in with her 6-year-old (who has Autism) began talking to me about all the great apps for kids.  I downloaded a few free apps and when Gwyn came out of PT, I showed her the apps.

Our girl is going to be an iPad girl!  She's been enthralled with the "Magic Piano" app and I love that the first song you can "play" by tapping the screen is her favorite "Twinkle Twinkle Little Star." She has also been tickled by the "Seek & Find Picture Book" app - a game where you touch the screen to activate different scenes around a Zoo.  The monkeys make her giggle every time.  I want to buy the rest of the app that has Farm and Forest options for the game.  Both of these games will help her improve her fine motor skills, hand-eye coordination, and problem-solving skills.

What apps do you know about for kids, especially kids with special needs?

Friday at the Farm: Therapeutic Listening

Yes, I'm half a week behind with the Friday post! Oh, well. :)  My excuse is that Gwyn and I both have strep again and she has an ear infection... My mother-in-law said it best to me last night that her tonsils can't come out soon enough!

Anyway, last Friday's therapy update is that I ordered and received the Sennheiser headphones so Gwyneth was able to start the Therapeutic Listening program.  Her Occupational Therapist Kacie got the headphones and tiny disc player all set up for us.  Here are the basics of our new OT endeavor:

• the specially designed headphones are "open-air" so Gwyn hears the disc, but can also hear sounds/talking around her
• the discs play music that has been altered by computers in order to help the brain and nervous system "respond" with the goal of improving skills in many areas (from posture to attention to communication and more)  More specific details can be read here: Vital Links
• she cannot have any electronic toys, TV, radio, etc going on at the same time because it would interfere with what she hears on the disc
• she listens to the disc for 30 min at a time, twice per day, preferably while doing an OT activity and not within 3 hours of bedtime (also, not while riding in the car)
• some of the activities we've done so far are self-feeding during breakfast, wooden puzzles, coloring with crayons, putting foam shapes onto wooden pegs, etc.
• it will be hard work for her since it is affecting her nervous system and trying to improve many things throughout her body - it could even regulate her digestion
• we will exchange our disc at the Farm every two weeks for the next level disc (the discs getting progressively more challenging)

I've been impressed with her tolerance of it so far, although she does a lot better if she's getting one-on-one attention from me at the time.  I tried wearing my large (non-earbud) headphones at the same time once and she was happy to see them on me.  She didn't try to pull her headphones off every few minutes like other times.  So I will wear my headphones when I can to show her my support. :)

I'm excited about this new program, but I realized that with going to full day preschool Monday to Thursday, we will only be able to do the 30 minute session once in the afternoon.  The bus picks her up at 6:45 am and brings her home now at 2:45 pm.  I plan to try the headphones right after she gets home, and hope it won't be too tiring for her.