About this three year old. She has music in her soul and 99% of the time is singing some sweet little tune with accompanying dance routine. She pours her little heart into her songs with such emotion! Lately her favorite tunes have been any song from Trolls, "Hey Brother" by Avicci, any song from Moana, and oddly the Happy Birthday song. With music, also comes her love for DANCE PARTIES. Ryan and I have burned quite a few calories with our daily Trolls dance parties, so what can I say, she keeps us fit.
Sawyer loves....
- any and all animals---her chickens, other people's goats, dogs, and cats if she can chase one down
- swimming, playing in water
- painting
- exploring her surroundings
- play dates with her friends
- playing doctor (or nurse)
- cooking in her kitchen
- tea parties
- sleeping in "mama's bed"
We had our very first big birthday party to celebrate and it was so much fun! Then a few days later was Halloween and our first time Trick or Treating---she's a pro! While she's happy the majority of the time, I feel like we're finally getting into the tantrum stage and goodness. Terrible two's is a myth, things didn't get real until we got close to three. Like I said though, most of the time she's an angel and so fun to be around. :) And now it's our FAVORITE time of year so bring on all the holiday festivities!!
And now a few quick updates after her last surgery and recent appointments. So last we talked, we were going in to Sawyer's third hand surgery. If you need a recap of the original plan, you can go here to read about it. Day of surgery went very smoothly. We had a wonderful anesthesiologist, by far our favorite yet. Then we had our favorite surgical Liaison, Donald, who gives updates and who was there for her other two surgeries. And, of course, Dr Netscher, who even let me sneak in a picture of him before surgery. Same drill, they gave Sawyer Versed prior to taking her back...evidently her chart had in red and bolded "severe anxiety." Ha! That's okay. Makes everything a little bit easier for all of us.
Surgery lasted about 4 1/2 hours but went as best we could have hoped. What we had expected was true, her 1st and 2nd digit tendons were fused together so he separated those so each could function independently. Then he was able to use an extra tendon from her hand (probably what once went to her previous 2nd digit that was removed) to wrap around her 2nd and 3rd digit to close the cleft vs having to graft one from her foot. YAY! Here are a few pictures of her hand in the OR---I'm the weird mom who asked for these when he was showing them to us post-op. He is an artist though, no doubt.
Recovery was a little more difficult this time around than the last time. We were amazed by how quickly she bounced back in January post-op and how easily her pain was controlled. This time, she was much more uncomfortable and needed stronger pain meds for longer and to help her sleep. Thankfully, a few days after her surgery, our good friends came to stay with us and they were a wonderful distraction for her!
Six weeks later, her cast came off and here's what her hand looked like. The scars are intense and brought me to tears at first, but overall her hand looks wonderful. At this point, she is able to move her 2nd digit better but still has gone back to using her thumb and 3rd finger like before--muscle memory. We may have to do some occupational therapy in order for her to really start using her thumb and index. We tried taping the 2nd and 3rd together to see if that would help, but then she just used her left hand for things instead. We go back to see Dr Netscher in a few weeks and we'll discuss it then!
Next! We finally met with a Nephrologist to discuss Sawyer's pelvic kidney and kidney function. We LOVE her! So excited to find someone that fits our team perfectly on the first try! She had some concern about Sawyer's higher than average blood pressures (which can be associated with kidney function), so ordered a kidney functional panel for blood work and another ultrasound. Blood work was all within normal limits. Her ultrasound showed an enlarged left kidney (which is her normal kidney), echogenicity (potential damage) on right kidney (pelvic), as well as some pelvic dilation (hydronephrosis). Likely the enlargement is due to her good kidney having to work a little harder, but there was some concern for the dilation and echogenecity so she recommended a VCUG to test for kidney reflux. This was another outpatient procedure and they were able to consciously sedate her, then inserted a catheter, filled her bladder with dye, then took multiple X-rays to see where the fluid went and if she was able to empty her bladder fully. Good news, all normal!! Whew! So we'll just continue to monitor her blood pressures and follow up again with the nephrologist in a year.
Next week is her orthopedic visit for her feet, but lastly our yearly check up with her pediatrician. Sawyer weighed 23.2 pounds fully clothed, which is about a 4 pound weight gain for the year. While Sawyer is thriving, her pediatrician was concerned that Sawyer completely dropped off her growth curve and was not on any curve. While we most likely can attribute this to her syndrome, there are still so many unknowns about why these kids are so small, that we decided to go ahead and test her thyroid, growth hormone levels, and iron levels. If anything, it will at least give us a peace of mind and help rule some things out. Sawyer loves to eat and is pretty much snacking all day, but she doesn't eat a ton in one sitting and has a crazy metabolism. Within the next few weeks, we'll be taking her to have her blood drawn for all those tests and I'll keep you updated.
In the meantime, thank you all so much for continuing to follow our journey. It has been a wild and busy three years, but she is worth it all! She really is such a joy and we love her so. It's hard to believe that three years ago I wrote my first post on this blog. We were overwhelmed and broken and reading it now, I wish I could have told myself then, it's all going to be okay. Sawyer brings out the best in everyone she meets and her brave soul is so inspiring. We love our team that we've built and how much you love her! Thank you, again and Happy Birthday, Sawyer!
XOXO
We miss her/you guys at Rise! What a great report - Love keeping up with y'all on social media!
ReplyDeleteKeep on rocking Sawyer!