Sawyer is FIVE!

Hello friends and family!

Here we are another year (and some) later and our sweet girl is FIVE!  It was a bit crazy and hectic year for us with surgeries for Sawyer, her starting a new school, work changes for Ryan, and balancing it for me, but through it all you know our adventures with Sawyer are still the BEST part of every year.  Each age just keeps getting better and better.  We have so much fun together and can't get enough of her theatrical little personality.

Current Sawyer loves (and many repeats from last year)....

• Still dancing and singing...all the time
• Dressing up in costume, wearing dresses, twirly dresses, tulle 
• The Descendants 2, Frozen 2, Zootopia
• Chicken nuggets, any kind of soup, big apples, Chuy's creamy jalapeño 
• Pretend play, being outside, play dates
• Traveling and going on airplanes 
• Swimming-pool, lake, hot tub, bathtub 
• Christmas

This summer she took swim lessons and really took off.  She was pretty much swimming by her 3rd lesson.  So thankful she loves the water but also has respect for it and is cautious.  She is still taking ballet/tap and it's definitely her favorite activity!  Girl could live in leotards and tutus.  

I said 2018 was the year of YES for us but really I think we've decided to make a lifestyle of it. :) 

We always say we want to give Sawyer the world and with only one child, I hope we can.  She is quite the little traveler with two trips to California this year to see her cousins, two trips to Colorado, and her first international trip to Costa Rica with grandparents and cousins! She loves to fly and knows exactly how to navigate security lines at the airport now.  

In Costa Rica, she enjoyed collecting hermit crabs with her cousin Wren, hunting for sand dollars, and playing on the beach.

She got to go to Disneyland twice this year and spend Halloween there! Sawyer adores her older cousins and visiting them is always a treat. 

                                    

                   

Colorado is still a favorite and we were lucky to go twice this year-first to Breckenridge for a friend's wedding and second to Estes Park just the three of us.  We can still fit her in the hiking backpack so we're able to get in nice, long hikes!  She absolutely LOVES the snow so we're hoping to get in a ski trip in the winter of 2020!

Sawyer started at a new school this year for pre-K and really enjoys it.  She goes three days a week and looks forward to seeing her friends each day.  We're in the process of figuring out what we want to do for next year.  A few years ago, the thought of public school would have made be a nervous wreck, but as she's grown and we've seen her personality and friendships flourish, that idea isn't so scary.  We are still considering keeping her where she is and other private schools, but the local public school is definitely a contender!

Alright, update on all the other things...

We kicked off 2019 (literally Jan 2) with getting her tonsils out and another set of ear tubes put in.  Her first set of ear tubes worked wonders for her and we knew when they fell out because she got back to back ear infections for 3 months, so a 2nd set was necessary.   Also, Ryan and I started to notice an increase in snoring, as well as some sleep apnea, that was affecting her ability to get restful sleep.  We knew her tonsils were VERY large, but her ENT had wanted to grow her as much as we could before he took them out.  When we went in to see him about all the things, he agreed that it was finally time.  She stayed the night in the hospital after surgery to have 24 hours of IV hydration and steroids to help with swelling.  Also meant zero sleep.  The steroids made her SO hungry and I was happy to see her eating so well that first day.  Then the next two weeks were miserable.  She didn't sleep, she didn't eat, we worried about hydration, pain control was difficult because she didn't want to take oral medicine, she ended up having nerve pain that radiated to one of her ears (potential side effect of removing tonsils)...seriously it was miserable and a terrible way to start the year.

All of that being said, best thing we did for her!  She finally gained more weight than her average in a year, she ate better, she slept better, it's been amazing!  Talking with her pediatrician and ENT, we believe that her tonsils were actually obstructive and made it difficult to eat much at a time and also tired her out so she wasn't even interested in eating more. Thankful we did it and that she's not getting sick as often!

                                     

Sawyer got her new glasses and we've had about 50% luck getting her to wear them.  She'll wear them to school to start but usually they're in her backpack when I pick her up.  We've already had TWO calls from the school nurse for Sawyer coming to visit her for getting poked in the eye when she wasn't wearing her glasses.  It's a hard thing to explain to a child without scaring her too much, but that if she injures her eye that she can see with, then she won't be able to see anymore--goodness. In the next few weeks, we go back to her optometrist and can hopefully get another pair.  2020 goal: find glasses she'll keep on.

In my last post, I discussed our visit with her hand surgeon and he asked to give him one more try with her hand.  Recap, she's had three surgeries on her right hand.  Her 2nd digit constantly crossed over the thumb and she used her thumb and 3rd digit for everything and neglected her 2nd one and the webspace he made for her.  We struggled with the decision of whether or not to go ahead with a 4th surgery when we weren't positive it would give her any more use or range of motion.  I discussed it at length with my favorite doctors and therapists that I work with and it helped SO much to see multiple sides to the situation-so thankful for my team! 

                                      

In the end, we decided we wanted to go for it and give her the best chance we could at being able to comfortably use that hand...holding a pencil, hold bike handlebars without straining her wrist, hold a steering wheel eventually, etc.

In March, she had her 4th surgery on her right hand, 6th surgery of her life, 7th time to be under general anesthesia.  Like in the past, we headed down to Houston the night before, had her surgery at Texas Children's and headed home that evening.  She's seriously the best little patient.  We talked to her about what to expect and how she would have a cast again and she was really okay with it.

Dr. Netscher ended up grafting a tendon from her left foot to figure 8 around her 2nd and 3rd metacarpals for what he called a fixed/static hold.  He then used another piece of tendon and inserted it between the two digits for a dynamic hold.  Then he explored the insertion point of her thumb and second digit and realized the two tendons were fused, so whenever she moved her thumb, the 2nd digit automatically moved with it (causing the crossing of the fingers and making it difficult to use the web space), so he separated those.  Sorry, I know this is probably confusing...but in the end he came out to us and said he was SO excited about what he had been able to do and we just had to wait 6 weeks to see for ourselves!

                                  

She was a champ.  It took about a week before she could fully walk on her left foot, but it at least wasn't in a full cast, just wrapped.  We were able to control her pain and she was her cheerful self the majority of the time.  Honestly, the incisions for the tendon graft were a little larger than we expected, but she is SO proud of her scars and will tell you all about them.

6 weeks later her cast came off and her hand was actually much more healed than any of the other times.  And now just look at this picture.  It may not seem like much but this was the first time she ever held anything with her thumb and 2nd finger, without some manipulation/maneuvering...

I was beyond excited and it's the best outcome we could have hoped for!  We spent another six weeks working with our favorite hand therapist then went back to see Dr Netscher one final time.  It was a bitter sweet appointment.  We've been seeing him since she was 6 months old!! He's practically an honorary grandfather at this point.  We showed him everything she could do now and he was so proud.  We gave hugs, I tried not to cry, and then we basically said goodbye.  He asked us to come by and see him whenever we came to Houston and to keep sending pictures. He is GOLD and we love him so much. :)

We still need to go see the orthopedic specialist for her feet and leg length discrepancy, but can't imagine we'll be doing anything different this year for those.  Feeling excited for 2020 and hopefully a year without any surgeries!!

Thank you for continuing to check in on our girl and lift us up!  She is one special little girl and we love doing this life with her. 💜

Sawyer is FOUR!

Hi friends and family,

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!

Whew!  It's a good thing these updates are few and far between, but makes for a long one when I get around to it.

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!

Sawyer is THREE!

Oh my goodness, I don't even know where to begin.  I have multiple updates from her doctors but first, Sawyer is THREE!!! I feel like I blinked and it was her birthday again.  Our sweet little 3 pound baby has grown into an even sweeter 23 pound little girl (with some sass for good measure).

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