Can you believe Sawyer is FOUR?!? Time flies, as usual, and we have had an amazing year! I don't quite even know where to pick up where we left off but I'll do my best. First and foremost, what is this girl in to right now?
Sawyer loves...
- Dancing-dance parties, dance class, any kind of dance
- Swimming-my little mermaid wanted to spend the entire summer in the water
- Ocean waves & sandy beaches
- Holidays--we started saying "it's almost Christmas" in July
- Camping in her "tiny house"
- Play dates -all day, every day if she had her way
- Jungle gyms--Catch Air is her current favorite
- Pretend play-doctor, teacher, firefighter
- Baking--loves to help measure and mix
- Music--singing, dancing (see above), playing her violin
- Twirly dresses and anything with tulle
STATS: 26 lbs, 36 inches of feistiness
This was the year of YES for us. After Sawyer's last surgery and always feeling like we had another appointment to schedule or another procedure to anticipate, we went into January and felt like we finally came up for air. We made the decision to try to do more trips and adventures and say YES to more things and what a year it has been!
In January, Ryan and I decided to try putting Sawyer in a local Mother's Day Out program twice week. Believe me, my anxiety was high and I had doubts especially after being spoiled at Rise but Sawyer loves it and has gone back this Fall. She made instant friends and looks forward to going each week! My favorite part is the little songs she comes home singing after chapel. She is also taking dance lessons now and absolutely adores them. She had her first performance at the local tree lighting this December and look how cute her outfit was!
Sawyer also started taking violin lessons!!! Like I said before, she loves anything related to music and showed an interest in violin which is pretty much perfect for her little hands. We really just wanted a fun way to introduce her to an instrument/musics and her teacher is amazing and makes it so fun for her! Just a few months in and her little fingers are already strengthening and the best part is, holding the bow forces her to open that web space of her right hand and use it! Win-win!
This year we went on multiple trips. Camping, California/Disneyland, and Maui!! Maui was a joint trip with my sister and her family and we had a blast. Sawyer loved the beach and sea turtles and luau, time with her cousins...pretty much everything!
Now let's go back to after her last birthday and surgery. After she got her cast removed and had some time to heal, we went back to see Dr Netscher in Houston. Her finger he worked so hard to straighten was still deviating to the left and hooking over her thumb and we weren't even entirely sure that she had any control over that finger. He agreed with all of these things and prescribed hand therapy to try and see if the finger just needed to be strengthened. We were able to find a therapist nearby that works in the same practice as Sawyer's orthopedic specialist for her feet and she was AMAZING! Sawyer loved her instantly and it was the perfect match. She couldn't wait to play with her therapist and after a few months we were sad to say goodbye. But the therapist showed us that Sawyer COULD use that finger, it wasn't very strong and she preferred not to, but that it would just take time to practice and a desire for Sawyer to want to use that finger, which may not be right now.
After over a year, we finally went to visit Dr Netscher again and discuss her hands. First of all, it was an incredibly special appointment. We took her violin with us so she could play for him and it was so special. Thinking of where we started with her little hands and where we are now brings tears to my eyes. He clapped when she was finished and said he was so impressed with her! He ended up taking more x-rays and spent a good hour reviewing things, having her pick things up with her right hand, squeeze different things, then said he would really like to do one more surgery on her right hand. He is confident that going in one more time, he can reinsert the tendon on that 2nd digit to where it doesn't pull her finger over, then after grafting another tendon from her foot, use it to figure-8 around the base of her phalanges (proximal) to make them stay together. Unfortunately, she doesn't have full range of motion in that 2nd digit and she probably never will. This surgery would essentially just be straightening it so she has an easier time using her thumb/webspace versus the thumb and 3rd digit.
We told him we needed some time to think about this one. To be honest, we have no idea what to do. While I would love for that finger to be straight and for it to be easier for her to use her webspace (riding a bike, holding a steering wheel, violin), we're concerned about the emotional trauma that comes with another surgery. She already cries when you bring it up and says "No more surgeries. No casts. No bandages." She's also functioning well with it, as is, but when she's older would she wish we had done it for other reasons? There's also the same risk as we had last time of grafting a tendon from her foot-she doesn't have very many in her feet and while he says it's a very small risk, what if we do damage to her foot and upset her walking? Ugh, parenting and making these decisions is tough. We're taking time to pray about it and really weigh the pros and cons. We love hearing your input so if you have any advice, send it my way.
Next, we saw her orthopedic specialist for her feet in the Spring. Same news which is good news, don't see any reason to do anything surgically with her feet at this point. She can walk and run, has good balance. He said if it gets to the point where we're having trouble with shoes then to come back and see him, but thought it was great that she wore mostly moccasins because it strengthened the muscles she has in her feet and her ankles. She does still have a pretty significant leg length discrepancy and was concerned about scoliosis, so he went ahead and did multiple x-rays. No scoliosis, just her leg length differences altering her stance. At some point, that may require a surgery involving pins, but could be as simple as a shoe lift.
After having zero ear infections for over a year following tubes being put in and adenoids out, she had her first one in August and they saw the tubes had fallen out. She had a 2nd infection not long after that. We also started noticing her sleep apnea was getting worse. We've known for a long time that her tonsils would likely need to come out since they're about 3X too big for her body, but when we last saw the ENT, he wanted to wait a little longer. Before, we only noticed her apnea when she was in a carseat, but otherwise she compensated by sleeping on her stomach. Then she started snoring even on her stomach, cough/choking awake multiple times throughout the night, and continually being tired during the day despite 12 hours of sleep. Took her back to the ENT and he agreed it's time to take out her tonsils and put tubes back in her ears. This is all happening on January 2.
Last but not least, her yearly visit with the optometrist. Vision has remained the same 20/40 in left eye and 20/600 in her right eye (with coloboma). We have had zero luck getting her to consistently wear her glasses so we picked out a different pair that should be here within a few weeks. Hopefully we will have better luck with these!
This was the year of YES for us. After Sawyer's last surgery and always feeling like we had another appointment to schedule or another procedure to anticipate, we went into January and felt like we finally came up for air. We made the decision to try to do more trips and adventures and say YES to more things and what a year it has been!
In January, Ryan and I decided to try putting Sawyer in a local Mother's Day Out program twice week. Believe me, my anxiety was high and I had doubts especially after being spoiled at Rise but Sawyer loves it and has gone back this Fall. She made instant friends and looks forward to going each week! My favorite part is the little songs she comes home singing after chapel. She is also taking dance lessons now and absolutely adores them. She had her first performance at the local tree lighting this December and look how cute her outfit was!
This year we went on multiple trips. Camping, California/Disneyland, and Maui!! Maui was a joint trip with my sister and her family and we had a blast. Sawyer loved the beach and sea turtles and luau, time with her cousins...pretty much everything!
Now let's go back to after her last birthday and surgery. After she got her cast removed and had some time to heal, we went back to see Dr Netscher in Houston. Her finger he worked so hard to straighten was still deviating to the left and hooking over her thumb and we weren't even entirely sure that she had any control over that finger. He agreed with all of these things and prescribed hand therapy to try and see if the finger just needed to be strengthened. We were able to find a therapist nearby that works in the same practice as Sawyer's orthopedic specialist for her feet and she was AMAZING! Sawyer loved her instantly and it was the perfect match. She couldn't wait to play with her therapist and after a few months we were sad to say goodbye. But the therapist showed us that Sawyer COULD use that finger, it wasn't very strong and she preferred not to, but that it would just take time to practice and a desire for Sawyer to want to use that finger, which may not be right now.
After over a year, we finally went to visit Dr Netscher again and discuss her hands. First of all, it was an incredibly special appointment. We took her violin with us so she could play for him and it was so special. Thinking of where we started with her little hands and where we are now brings tears to my eyes. He clapped when she was finished and said he was so impressed with her! He ended up taking more x-rays and spent a good hour reviewing things, having her pick things up with her right hand, squeeze different things, then said he would really like to do one more surgery on her right hand. He is confident that going in one more time, he can reinsert the tendon on that 2nd digit to where it doesn't pull her finger over, then after grafting another tendon from her foot, use it to figure-8 around the base of her phalanges (proximal) to make them stay together. Unfortunately, she doesn't have full range of motion in that 2nd digit and she probably never will. This surgery would essentially just be straightening it so she has an easier time using her thumb/webspace versus the thumb and 3rd digit.
Next, we saw her orthopedic specialist for her feet in the Spring. Same news which is good news, don't see any reason to do anything surgically with her feet at this point. She can walk and run, has good balance. He said if it gets to the point where we're having trouble with shoes then to come back and see him, but thought it was great that she wore mostly moccasins because it strengthened the muscles she has in her feet and her ankles. She does still have a pretty significant leg length discrepancy and was concerned about scoliosis, so he went ahead and did multiple x-rays. No scoliosis, just her leg length differences altering her stance. At some point, that may require a surgery involving pins, but could be as simple as a shoe lift.
After having zero ear infections for over a year following tubes being put in and adenoids out, she had her first one in August and they saw the tubes had fallen out. She had a 2nd infection not long after that. We also started noticing her sleep apnea was getting worse. We've known for a long time that her tonsils would likely need to come out since they're about 3X too big for her body, but when we last saw the ENT, he wanted to wait a little longer. Before, we only noticed her apnea when she was in a carseat, but otherwise she compensated by sleeping on her stomach. Then she started snoring even on her stomach, cough/choking awake multiple times throughout the night, and continually being tired during the day despite 12 hours of sleep. Took her back to the ENT and he agreed it's time to take out her tonsils and put tubes back in her ears. This is all happening on January 2.
Last but not least, her yearly visit with the optometrist. Vision has remained the same 20/40 in left eye and 20/600 in her right eye (with coloboma). We have had zero luck getting her to consistently wear her glasses so we picked out a different pair that should be here within a few weeks. Hopefully we will have better luck with these!
Each year around her birthday, Ryan and I reflect on the last few years. I remember being in the recovery room with my mom after my c-section and had only seen Sawyer's feet and breaking down and asking my mom "How will this world treat her?" I was so afraid of the unknown and wish I could tell her it will be okay. There will be surgeries, there will be long specialist appointments, there will be procedures, there will be stares from strangers, there will be heartache and tears, there will be many unanswered questions, BUT above it all, there will be incredible JOY. Sawyer will open peoples' hearts and change minds and bring smiles to their faces. Your friends and family will rise up and be her biggest supporters and you will find a tribe that embraces Sawyer. This has been an incredible soul shifting journey and reminds me of one of my favorite quotes. "I have been bent and broken, but I hope into a better shape." This life with Sawyer has pushed us and stretched us, but we are better people for it. As always, thank you for being there to support us through it all and love our girl. We are so very proud of her and love getting to share her journey with you.
Merry Christmas, everyone!
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