Making Progress.....Taylor's a Husky!

Hello...and sorry for more delays on blog postings. We went to Missouri over the week-end to see my family (and had a wonderful trip) and I'm just now catching up. A bit of back-tracking first.....

Last week before we left I had a potentially tough appointment with Taylor. Susan (our OT) wants Taylor to practice standing more so her hip joints can "set" and she builds the right muscles in her lower extremities. Taylor can actually stand holding onto something fairly well, but has to be totally supported because she still can't catch herself if she falls, or lower herself safely to the ground. To ensure that she learns to stand properly (mainly preventing Taylor from favoring her right side, as is her nature), Susan wants her to have orthotics/braces to wear while she practices. I took Taylor to Cascade Orthotics in Issaquah (Seattle suburb) to get her prepped. I really dreaded it because they had to cast both of her legs - it literally looked like she had broken little legs. I didn't know how long she would have to wear the casts, but they set within 5 minutes and then they were cut off (don't get me started on the razor blade used to cut the cast off her tiny little leg). The good news - I sang to Taylor (and the poor tech) and she whined, but never seemed miserable. It was much easier than I expected and she should have her fancy, new, pink orthotics within a few weeks. They basically look like plastic shoe soles (David had a pair similar during his running days), but they extend up the back of her legs to ensure proper alignment. Hopefully this will be like the headgear I wore for my braces in middle school at night only - and no one will see her in them:) They actually are much less offensive than I had thought they would be - irrationally, I was envisioning the metal braces Forrest Gump wore as a youngster. Of course, they've come a long way. So, one more thing down.

We've also made a lot of progress on the therapy front. We had a great conversation with Susan before we left and finalized a schedule for Taylor in the fall. She will see Susan on Tuesday, Thursday, Friday, and most Saturdays for an hour at a time. This seems much more manageable than our current schedule. We all agree an hour is about as much time as Taylor can tolerate. We're looking for ways to help Taylor enjoy, or at least tolerate, her therapy. We hit the jackpot in Missouri. My parents have a big-screen TV that sits on the floor and we played a Baby Einstein DVD while she did her work-outs. It seemed to distract her and help a lot. We'll try to duplicate it with a portable DVD player at her eye-level to help her. Ipods for babies...so to speak.

Today also led to a big decision for us. I had encouraged Sarah (our PT from Boyer Clinic) and Susan to discuss the treatment plan for Taylor and had heard from Susan that the conversation had not gone well. I had expected this because Susan has a high bar and believes we should have a NDT-trained therapist from Boyer. For some reason, Boyer won't switch us to a NDT-trained therapist, which could really help Taylor. We were already very interested in the UW program (which would require switching from Boyer) and after my conversation with Sarah today and our Family Resource Coordinator from Boyer, Kelvie, we formally set the wheels in motion to make the switch. Sarah explained that she wouldn't talk to Susan because their conversation had gone so poorly. She would share notes, but she wouldn't speak to her or collaborate on Taylor's therapy. Seriously? I told her this was a big concern for us and we wanted a team that could work for Taylor to ensure we had a complementary treatment approach. She then offered to have her supervisor, who has never met Taylor, speak with Susan instead. I told her that wouldn't be helpful because we want people that know Taylor well to collaborate. It was a very bizarre conversation. Next, I spoke with Kelvie and shared my concerns: 1) we didn't have a NDT-trained therapist and they weren't offering to provide one, even though they have a full staff of them 2) multiple doctors and therapists have confirmed that Taylor has tone/spasticity and needs treatment to reduce it, and Boyer isn't treating her for it 3) the frequency of treatment (once a week for PT and twice a month for vision therapy) isn't enough for our daughter and 4) we need a team that can communicate and collaborate well. I told her that we had been looking at UW and Susan had good experience collaborating with them in the past and their preschool/therapy program starts at 12 months instead of 18 months. Kelvie agreed that was probably the right move for us. It was disappointing because I didn't get the sense that Boyer cared about Taylor (call me Pollyanna, but how can you NOT care about a baby??) - very much a program and not individualized. Anyway, we confirmed our spot at UW and Taylor will start her new preschool program on September 15th. She will go to "school" on Monday and Wednesday from 9-10:30am. One of us (or Julie) will always be with her, but we're thrilled to get her program started soon. David and I feel very assured that we've done our homework this time and this is a great move for Taylor. And, how many kids can say they were a Husky from 12 months??

So much going on.....we met with one of David's high school friends this morning, who happens to be a pediatrician at the same clinic as the guy we keep hearing about, Dr. Spector. She gave us good advice and was very open - in a nutshell, like a lot of people in this world - great skills, not-so-great communication style, but we're learning that we'll take the great skills and learn to deal with the communication deficiencies. Dr. Spector left us a voicemail this evening (I know, Mom, we should answer our phone) and I'm looking forward to connecting with him. I don't know if we'll switch pediatricians, but we'd love to meet with him for a consultation.

Phew....enough doctor speak. We're feeling better that we have a plan that is great for Taylor and manageable for our family. And, I haven't even covered our great trip with my family. We had a brilliant time, saw lots of family members, and had lots of great play time. A lot of my family hadn't seen Taylor since Christmas and so much has happened since then. It was great to share Taylor with them. I'll share more on our trip on my next blog (it will be soon!), but I'm ready to catch up on the Olympics now......