Today was Alayna's appointment at Shriner's Children's Hospital in Portland, OR. We saw a great orthopedic surgeon who used to be the Chief of Staff at the Honolulu, Hawaii Shriner's hospital. It was a LONG visit. It started with checking in, I of course thought, "I'm not driving, I don't need my purse." Um... Yea, our insurance cards are in my purse. (Joe has fax the cards into the hospital tomorrow.) Thankfully they were really great about that. Joe had to fill out a limited power of attorney form for me to be able to bring Alayna in for any other appointments.
They called us back a bit early, which was great because we arrived a good 30 minutes before our appointment time. They took Alayna's height and weight and all of our papers. The first doctor who came in to see Alayna was a doctor who was studying here in the US from Australia. He was really nice. He asked us about Alayna's life, from birth to now. He pushed, pulled, and prodded her arms and legs checking her range of motion and reflexes. She has little to no reflexes in her arms. After all of that he had Alayna walked up and down the hallway to watch how she walks. She does walk with a heel-toe gait on her right foot most of the time, but her left foot is almost always flat. He also noticed our concerns with her hips.
We went back into the room and waited some more. The nurse who works with the doctor we'll be seeing came in to check on us and explain how everything will work. Since Shriner's in Portland is a teaching hospital we'll end up seeing LOTS of doctors. Around this time we also discovered that Shriner's has a little table with snacks out in the hallway. Coffee, hot water for cocoa and tea, ice water, goldfish crackers, fruit roll ups, crackers, raisins, etc. Bella had all sorts of snacks while we waited, LOL
Finally the doctor came in and did some of the same stretches as the first doctor. She also watched Alayna walk up and down the hallway. She ordered x-rays of Alayna's hips. At that time I took Bella up to the third floor to the Halloween party they were having for the kids at the hospital. Bella got to paint a pumpkin, eat cookies, pick a toy, and play. We headed back down to check on Alayna and walked in on the tail end of a VERY important conversation between the doctors, the physical therapists they brought in, and the nurse.
As far as Alayna's hips are concerned they ARE turned out, at this point the doctors think it would be best to leave them alone though as it's something that Alayna can live with. With her muscles, ankles, and feet we have three options; treatment depends on our goals. Prior to any treatment they want Alayna to go in for a gait lab, which basically means they're going to record her walking and running to determine how to best help her. On to the options.
Option 1. Leave them alone and find a way to help Alayna work around it; however people who have the same problems as Alayna tend to have a lot of problems with walking, running, and tiring quickly (which Alayna does have trouble with).
Option 2. Is to do casting. Alayna will go in for casts to be placed on both feet and ankles. They will stretch Alayna's muscles out and then put the casts on. Alayna will have the walking boot over the casts. The goal of the casts is to stretch her muscles little by little. She will wear the set of casts for 10-14 days at which point we'll go back up to the hospital and get the casts off. They'll stretch her ankles and feet again and then put on new casts. We'll do this for about 6 weeks. At which point Alayna will get braces to continue the stretching.
Option 3 (which no one is really fond of) is surgery. The surgery to loosen her muscles to allow her to walk flat on her feet would take about an hour and she'd go home later that day. The surgery to turn her feet in the way they should be would be about 3-4 hours. It would require a 3-4 day hospital stay, and Alayna would leave the hospital using a walker.
In the event that option 2 doesn't work, we may still end up with option 3.
Joe and I have decided that we're going to go with option 2. Obviously we're working our tails off to meet Alayna's needs so we don't really like option 1 at all, and option 3 seems to be REALLY invasive, especially considering that we have another option.
Shriner's is going to call us to schedule the gait lab. That'll be a good 2 hours, after the gait lab Alayna will get her first set of casts. We aren't sure how far out that will be scheduled, but the doctor said it could be up to 2 months. The plus side to that is we'll have established physical therapy at that point and it'll give us a couple months to see how regular PT and follow through of exercises will work in helping Alayna.
OK, onto school conferences.
Brooklyn:
OK, so Brooklyn did NOT tell anyone about what happened to her face. I've spoken with everyone possible about it. Miss Karla said she does talk to Brooklyn almost every day, but that Brooklyn did not come to her.
Brooklyn still rarely speaks in class. She has show some GREAT reading skills and excellent math skills. Her writing skills... Not so hot. She can write ALL of her letters upper and lower case. When it's writing time the kids draw pictures and then write a bit about what their pictures are about. Brooklyn just writes her alphabet (upper and lower case) along the bottom of her picture. We discussed how Brooklyn can write words at home, but generally asks us what words she should spell first. So, her teacher said she could start doing that with Brooklyn when she draws.
I feel better about Brooklyn's teacher after today's meeting. I'm still not 100% about her, but I definitely feel better about her. We're still working towards an IEP for Brooklyn. I'm a bit frustrated that it's taken so long, especially after they have been so great at getting Alayna's done so quickly.
Aiden:
Aiden is doing great. His teacher had a LOT of great things to say about him :) He has EXCELLENT math skills, although he still needs to focus on memorizing his multiplication facts (which is where he and his class are right now). His teacher said that she's confident that she can put anything possible in front of Aiden to read and she knows that he could read it and understand it. His writing is still a struggle, but we're working on that both at home and at school. He's going to start speech therapy at school with the speech therapist for the stuttering. He hasn't out grown it and it's getting in his way of reading aloud.
Alayna:
There's never anything bad to say about Alayna :) Her teacher had each of the kids make their own goals with math, reading, and other. Alayna's goals are: to get better at geometry, have better fluency in reading, and to get better at making friends. We decided to keep those goals, but just amend the friend one to "make at least one good friend". We also agreed on how we would help Alayna meet those goals both in the classroom and at home.
Alayna's mom also showed up at the conference, so that was great. We were able to talk to her about the options we were given at Shriner's and the contacts that Alayna's eye doctor prescribed. She agrees with us that casts would be the best option and that we should try the contacts.
We are FINALLY home, dinner is done, homework is done, and I am ready to crash!
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