Therapy-wise. Oh therapy. She's hit or miss. She's making great improvements and getting so strong! She's hitting her milestones but usually on the later side of normal. Every specialist we have seen has commented on how strong she is and how advanced she seems for her age and size (though she be but little, she is fierce). According to our therapists, Sawyer has lower tone but the specialists seem to disagree. Maybe they are cutting her more of a break for being premature and IUGR. Tummy time is hit or miss, as well. Sometimes she tolerates it and other times prepare for a Sawyer meltdown. I'm waiting for that magical moment when she will actually enjoy it.
Current Likes:
- Bouncing on the exercise ball (actually part of her therapy)
- Long walks
- Play dates with friends
- Playing with her feet
- Rolling from tummy to back (see ya later tummy time)
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| 1st sleepover with her BFF Levi |
Dislikes:
- Mom going back to work
- Napping in crib
Now for the big news this month. Since being discharged from the NICU, I've been putting off making an appointment with a geneticist because I was seriously dreading it. Every time I thought about going to visit one, sitting in their office, listening to them pick apart every little difference that Sawyer has and what's wrong with the picture, just made me sick to my stomach. I'm a mother and a nurse, so you better believe I have thoroughly assessed every inch of her and would like to think that they wouldn't find anything I hadn't already found myself...still it's tough to hear someone scrutinize your daughter. I had also been forewarned that geneticists tend to be very clinical. While they are brilliant, they are blunt and can come off as insensitive. I ended up making an appointment with a geneticist at Texas Children's Hospital that was recommended by a good family friend. I called on a Monday for an appointment, was told he didn't have availability until after October, wasn't able to make an appointment because their scheduling system didn't go that far in advance, but then by God's good grace, they called me back 10 minutes later and said they could see us on the following Thursday.
If I tell every detail, this is going to be a super long post, so shortened version---Texas Children's Genetics Clinic was wonderful and we had a great experience. Everyone from the ladies that checked us in, the nurses, the genetics counselor, and specifically, the geneticists, were so kind. They examined Sawyer, looked over the genetic tests results we've already done, and honestly said that Sawyer doesn't fit into any particular syndrome that they know of. Our main geneticist recommended that we have a trio whole exome sequencing test done, which will look at thousands of Sawyer's genes (and ours) and look for mutations that may be responsible for her differences. It will also give us insight on if there is anything else we should expect in the future. All three of us will have our blood drawn for this test, but we are still awaiting insurance pre-approval before we can get started, then it can take 6 months for results. While we still don't have any more definitive answers, I feel like we are heading in the right direction and I'm grateful to add such a kind geneticist to our team.
This past week we also met with another hand surgeon in Houston for our third consult. Truth be told, initial impressions based off of his office were not positive. I just about turned right back around as soon as we walked through the door, because it was not kid friendly and very, very plain. The exam rooms looked like it was from the 1970's with a brown leather exam table and old-school x-ray light up box. He also only sees patients in the evenings so we had a 6pm appointment in downtown Houston---we were all tired and restless by the time we got there. However, we were most pleasantly surprised. He was very sweet and gentle with Sawyer and really seemed to care about her. He sat down with us, thoroughly examined her hands and feet, then talked to us about what he recommended which was slightly different from what the surgeon's in Dallas had planned. He suggested we do the first surgeries on her hands to separate the fused fingers at the end of July, surgery on her feet at the end of November, then the 2nd surgery on her right hand to close the cleft sometime next year. I'm happy with his recommendations but am already anxious about a surgery in July. He said to expect 2 weeks of casting for her hands (all the way up past the elbow) and 6 weeks of casting for her feet (up past the knee)---eek.
What Ryan and I really liked about him was that he took quite a bit of time to explain things (including drawing pictures and bringing out a model hand to show us anatomy), complimented us on our good questions (not our first rodeo), and seemed genuinely interested in Sawyer. We haven't officially chosen him to be her surgeon, but we are certainly praying about it and discussing it. Icing on the cake was when he went to get his calendar to put down tentative dates for her surgeries and came back with a paper calendar to pencil her in. That just about sealed the deal.
In just a few weeks we'll have our 6 month checkup with our pediatrician and I'm anxious to talk to her about everything that has happened in the past 2 months (and get an official weight check)! Until next time, prayers that we'll make the best decision for Sawyer regarding surgeries and her therapies and prayers that she'll continue to gain weight so that her little body will be able to tolerate anesthesia better if we decide to go ahead with a surgery in July.
As always, thank you for keeping us in your thoughts and prayers.
love,
Team Sawyer
