Two Year Update

Hello friends!

It's hard to believe but it has been 6 months since my last update!  In truth, that's a good thing, because life has been great for us lately.  Around this time last year, Ryan and I made the decision to buy a few lots right outside of the city and build our dream home.  We were looking for little more outdoor space (and maybe some extra closet space, too) and most importantly wanted the perfect home to raise Sawyer and that needed to be on a little less busy of a street.  After quickly selling our home in March, we moved to my family's lake house for 8 months while we worked closely with a good friend to build our new home and now we are in it!  Not only did we have some moving changes, but Sawyer also started a new school and we are IN LOVE with it!  But let's start with the best part, an update on our girl!

Sawyer is now TWO years old!!! This big personality comes in the petite little 19 pound body and we just love every ounce of her.  She runs, she jumps, she tumbles, she climbs, she's a busy body.  She loves to sing---'twinkle twinkle', 'itsy-bitsy spider', and 'if you're happy and you know it' are the current favorites, complete with hand motions.  Sawyer still adores being outside and now we have a nice big yard for her to play in with her dog, Nelly.  She loves stuffed animals of all sizes and insists on sleeping with at least 4 of them each night.  She is saying so much and my favorite phrase is "where are you?" with a head tilt and palms up gesture.  Her favorite tv show is Daniel Tiger and also has a new found love for Little Bear.

Food-wise, she will almost always eat yogurt and applesauce without fail. Everything else, it depends on the day.  One meal, she'll love chicken and mac n cheese and broccoli, then won't touch it the next day.  That's toddler-hood though right?

And now, a little bit about her new school.  Last May after my 18 month post, I had multiple individuals contact me about The Rise School in just one week.  After reading about it online, Ryan and I decided to take a tour with Sawyer and immediately fell in love.  The Rise School is an inclusive preschool  that enrolls children ages 18 months-6 years of age and roughly 50% of the students are typically developing and 50% of the students have some sort of developmental delay/syndrome.  The teacher to student ratio is 3:1 and there is a speech therapist, occupational therapist, physical therapist, and music therapist on staff to evaluate and work with all children.  Every room in the school, including the classrooms, playgrounds, and library, is developmentally appropriate for the children, but the most AMAZING part of the school is the staff.  Each one of them is passionate about what they do and LOVE the kids.  I've been so impressed with how much she has learned just since starting in August and how much she enjoys going.  It's so cute to talk about all of her little friends and see their pictures each week.  Sawyer didn't necessarily have any delays requiring therapy, but what we liked about this school was their emphasis on inclusion and embracing differences.  Their motto is "where special kids shine."  Not only have we found a community where there are other families with children with differences, but other families who want and support their children being there.  It's a happy and safe place for us all.

This past week we went back down to Houston to visit with Sawyer's hand surgeon to discuss and schedule her next surgery.  First off, the appointment went SO well.  These appointments are always difficult because he only sees patients in his office starting around 4 after his surgeries, which usually means he doesn't walk through the door until closer to 5.  Commuting to downtown Houston isn't exactly fun during that time of day and waiting in a small waiting room for over an hour with a two year old isn't exactly fun either.  But once we got to see him, I couldn't believe how well Sawyer did. After her last surgery in July, Sawyer developed a fear of 1) elevators 2) doctor's offices 3) older men.  We've slowly but surely outgrown the elevators and office fear, but she still has some timidness with men.  Happy to say though that she smiled at him, let him touch her hands, let him take an x-ray, and even gave him a high-five at the end!  Definitely put my heart at ease.

Now for the details, we scheduled the surgery for January 25 and this will only be on her right hand this time.  Here's a picture of the x-ray of her right hand (yes, I was able to take a picture because he still prints out x-rays old school wise and puts them on a light board).

He will be closing the cleft and straightening the 2nd digit which basically involves reconstructing ligaments, slight reduction of 2nd metacarpal, and removal of extra skin where it's clefted.  Similar to last time, she will have a long metal pin placed through her 2nd digit for stabilization as everything heals during the casting process which will be a month.  Thankfully this time, she won't have to have any skin grafts taken from her groin area.  The surgeon did say that there is a possibility that he will have to take part of a ligament from her wrist to reconstruct the finger ligaments, but he won't know until he sees them.  Right now, her finger has been curved and stretched to the left side for so long, that the ligament that runs on the inner side of that finger, may have too much stretch to it and when he straightens it, still be too loose----that's where taking the ligament from her wrist will play in.  Hoping that's not the case though!

While we are not looking forward to another surgery and have once again grown to love and be accustomed to her hand being this way now, we know in the long run it's for the best.  At least this time it's not both arms and she's actually very good with using just her left hand.  She'll also have school which will be a great distraction for her and after her cast comes off, I'm so glad she'll have therapists who are able to work with her, if needed.

I'll stop back in after her surgery and keep you updated.  But in the meantime, we're just going to be soaking up all the holiday fun with our sweet and happy girl.  Thank you for being such an amazing Team and Merry Christmas!

love,
Team Sawyer

18 months old!

Sawyer is 18 months olds! Can you believe it?  THIS is by far my favorite age so far.  She is sassy in the best way possible, she is walking, practically running, saying over 20 words, and just growing up so much.

Her current favorite words are "uh-oh", "UP!" and "bite".  As soon as you walk in the kitchen and pull something out of the pantry or fridge, she comes at you with mouth open saying "bite. bite."  She has a tendency to purposefully throw things down then say "uh-oh"" and when she is in a hurry to get somewhere she comes to you and says "UP" then points in the direction she'd like you to go.

She loves brushing her teeth, but especially with my toothbrush. (Don't even know)  She loves climbing up the stairs, but would prefer a ride back down.  Still ADORES being outside and splashing in water.  And she LOVES her da-da! They have so much fun with each other these days! And Nelly...she's right up there with da-da. ;)

Now that she is becoming more assertive and going up to other kids, we have started getting questions---most often regarding her different eyes.  Kids are amazing in what they notice and innocently ask questions about.  So far, each child has been completely curious and not at all mean about anything.  A little boy at the play gym said "hey, why does she have one little eye and one big eye?"  And I just said that she was born with special eyes.  His response "Cool. I have two big eyes." And resumed playing.  Cool. 

Even parents have been great when their kids ask questions and just respond about how we're all different.  That works for me, too.  Usually adults are more curious about her hands and ask what happened, especially when they notice the scars.  I know there will be times when I won't feel so positive about certain interactions, but these first ones have given me hope.

Last time we left off was with Sawyer's diagnosis.  Since then I have continued to read every last available piece of information regarding this syndrome.  While I still have quite a few questions, despite my deliberation with e-mailing geneticists, I'm afraid those questions may not have answers at this time and we'll just continue on with the "wait and see" approach.  We did visit with a new geneticist at TCH (unfortunately our first left the practice) and while he was very kind, he wasn't very familiar with Focal Dermal Hypoplasia (FDH) and was not able to give me any more information than I already knew from just reading the literature.  We will go back in a year for a follow up, but next time be meeting with a different geneticist, who has a special interest in FDH and even completed a research study about it.  (And yes, I already e-mailed him with questions.)

Next, we followed up with her hand surgeon.  We've lucked out with getting one of his first appointments of the afternoon the past few times, so rather than wait 2 1/2 hours, we only had to wait 45 minutes last time!  He was so pleased with how her little hands had healed and how she was using them.  Originally he discussed needing a second surgery for both of her hands, however, we both agreed that holding off on her left hand was the best course of action.  At this point she is still not fully bending her left two fingers at the middle knuckle joint (likely do to tendon insertion), but since she is still so small and not growing very quickly, he thought it best to wait until she was older (and bigger) before trying to work with the tiny nerves and tendons again.

Her right hand does need surgery though to close the cleft and bring the 2nd and 3rd digit closer together, as well as straighten the 2nd digit.  I went into the appointment prepared to argue my case for waiting until next year to do surgery (thinking we were going to be doing one on both of her hands), he heard my case, I heard his, and we negotiated and settled on having the surgery done in the Fall.  So thankful for such a brilliant doctor who will actually listen to my concerns and be willing to meet me halfway.  We haven't scheduled this surgery yet but plan to go back in July to put it in the books. 

Moving on.  We met with the pediatric orthopedic specialist here in Austin for her feet this week and despite Sawyer melting down and trembling with fear, he was able to see her walking and had nothing but good things to say.  Her feet are functioning just as he hoped and he did not recommend any special inserts at this point, especially since she mainly wears soft soled moccasins.  We will just follow up again in 6 months.  Surgery on her right foot is not completely off the table, but likely not until closer to age 4. 

Next, we finally picked a dentist for Sawyer.  We had gone back and forth about male vs female, age, location, experience, etc, for months now (yes, we considered all of these factors), and finally chose someone not terribly far from where we'll be living in the future, personal experience with a child with differences, and I felt like would be willing to do the research necessary to treat Sawyer.  The majority of kids with FDH have some sort of dental issues, most commonly enamel defects that can more easily lead to cavities.  Our new dentist said her teeth actually looked wonderful.  Some of them are smaller than average and mild enamel hypoplasia, but honestly, nothing that he was concerned about right now.  We'll go back in 3 months for a preventative fluoride treatment then just continue to follow up like normal, every 6 months.  He said he was going to do research on her particular diagnosis and I asked if he would like the printed copy of the gene review I had brought (I'm that mom.) and he said yes and was appreciative.  I think he only thought I was a little crazy....

Finally! We had Sawyer's 18 month check up.  Little miss is 16 lbs 11.8 oz.  She's smaller than we all hoped...I really thought we might be pushing 17.5 or maybe even 18lbs, but sure enough, we're still in the 16 range.  While our pediatrician admitted that it was against her nature not to worry about such little growth in the last 6 months, she knew it was just part of Sawyer's condition.  She's just Sawyer! And she marches to the beat of her own drum.  Otherwise, cognitively and developmentally, Sawyer is doing AMAZING!!  Verbally she's saying more than is expected and physically she's right on track.  Afterwards we went to PTerry's to get her a milkshake to celebrate our little rockstar (and try to fatten her up).

This girl is absolutely amazing and I feel so lucky to be her mom.  Every day is a new adventure with her and I'm loving seeing this little girl become her own big personality.  Thank you for checking in!

love,
Team Sawyer

So we have a diagnosis.

Just wanted to stop by for a quick update regarding recent developments with Sawyer's genetic results.  But first, she is doing SO well.  We are in a walk, fall, crawl phase where she still finds crawling to be way more fast and efficient, but does her fair share of walking.  She is crazy and gets into everything.  Her new favorite word is "No" with a head shake and likes to give high fives and kisses and help unload the dishwasher.  And now for our results. :)

You may remember that back in September, Sawyer, Ryan, and I went to Texas Children's to have our blood drawn for a very thorough (and very costly) genetic test called the Whole Exome Sequencing Test.  This was basically the big daddy of all genetic tests and essentially the end all for roads we could take with testing.  They said to anticipate it taking up to 6 months to get the results, but less than 4 months later, they called with ours.

On Thursday, January 7, a genetic counselor called to let us know that Sawyer did in fact have a mutation on a particular gene which has been linked to a syndrome that would explain Sawyer's differences.  Sawyer has a mutation on the PORCN gene.  The mutation was random and not inherited from me or Ryan.  They think this gene is responsible for the release of particular proteins that signal development during the early embryonic stage.  We're talking 4-5 weeks gestation.  Because of this mutation, the signals for proper development are disrupted causing certain things to develop incompletely.  In Sawyer's case, her hands and feet, her right eye, her right kidney, her nails, and even her size.  The syndrome that encompasses all of these differences is called Focal Dermal Hypoplasia (FDH) or also referred to as Goltz Syndrome.  From one source, "Focal dermal hypoplasia (FDH) is an uncommon genetic disorder characterized by distinctive skin abnormalities and a wide variety of defects that affect the eyes; teeth; and skeletal, urinary, gastrointestinal, cardiovascular, and central nervous systems."  FDH was first named in 1962 by Dr Goltz but that actual gene link was not made until 2007.  A quick google search will lead to you to the basics of the syndrome, some of the things which Sawyer portrays and others she does not.  For the most basic review of the syndrome, read here.  Want to go a little more in depth?  Read here.

How are we feeling?  That's a good question.  My initial reaction after getting off the phone with the counselor was tears.  But I couldn't tell you if they were happy tears, sad tears, tears of relief...I'm not even sure.  I am relieved that we have an answer.  Confused and nervous because this syndrome includes things that Sawyer doesn't have or has yet to show.  Bewildered that there are less than 300 cases reported.  Worldwide.  Ever.  It's so uncommon and rare that there's not even a statistic for prevalence.  We fondly referred to Sawyer as "one in a million" since we didn't have a clear diagnosis for so long, but one in 25 million---is this a joke?

But let me tell you just how AMAZING my husband is.  Before I even set down the phone after saying goodbye to the counselor and he could see the sob forming in my chest, he grabbed my hand and said "This doesn't change anything.  She's still Sawyer."  Seriously, amazing.  Definitely a keeper.  God gave me a good one.

Now that I've had some time to process (and research), we're both at peace with it.  Sawyer is so special and while we've joined another club that we never imagined would be in our cards, I feel like we'll be part of a unique and supportive community.  I found a group on Facebook for those affected or for parents, relatives, and friends of those affected with FDH and they have already been a tremendous resource.  I have found that some of their stories mirror ours and their comments echo my thoughts the past 14 months.

Does this change anything?  Not really.  As so many say, she is not defined by a diagnosis.  She is still our feisty, vivacious, toothy grinned girl whom we love and adore.  This just makes us more aware of things we need to watch out for, such as heat intolerance, skin sensitivities and differences, early onset childhood osteoporosis, stunted growth, and teeth abnormalities.  We now know that enamel defects are common in teeth, so being proactive and finding a dentist early on is wise, but we've pretty much already lined up our other specialists to address each of her issues.  Also sounds like all of these kids remain below the third percentile in growth and I found one research study trying to link the gene to having effects on the pituitary gland which in turn causes poor growth.

February is a big month for us.  We had the most appreciated and most needed reprieve from specialists from the end of October until now.  Not that we don't love every specialist on our team, but we got to enjoy the holidays and not be concerned with appointments and tests, etc.  The holidays were wonderful and I'm so thankful for that break.   Now we're back to it.  We'll meet with another geneticist to discuss Sawyer's results and so that he can make referrals for us, as well as meet with her hand surgeon and discuss when to schedule her next round of surgeries.  Then back to our orthopedic specialist here in town and the ophthalmologist.  We're not very excited.

I'll keep you all updated as we find out more information.  I'd be lying if I didn't say I wasn't slightly disappointed that we will not be getting a syndrome named after us...I mean, how cute and non-invasive does "Sawyer Syndrome" sound?  In all seriousness though, if you take away anything from this post, I think the very most important thing I hope you remember is...she's still Sawyer. And that's all that matters.

Happy Birthday, Sawyer.

Dear Sawyer,

Happy Birthday my sweet, sweet girl!!  I can't believe it has already been a year since you were born.  They say time flies and I feel like we just blinked and a year went by.  Let me start by saying, you are my favorite.  You are my favorite reason to wake up every morning.  You are my favorite to snuggle with.  You are my favorite to share food with.  You are my favorite to laugh with.  You are my favorite reason to never give up.  You are my favorite.  Your daddy and I love you more and more every single day, more than we could have imagined was possible.

On the day you were born, you were surrounded by people who loved you and cared about you.  Your doctors, nurses, family and friends wore little badges that said "Team Sawyer."  We could not wait to meet you and while I would have given anything to spend every last second with you, things don't always go as planned.  For the first 51 days of your sweet life, you spent them in the Neonatal ICU, growing and learning how to eat, but you had some pretty amazing people helping to take care of you.  The night we brought you home will forever be one of my favorite memories.  We sat in front of the Christmas tree and looked at the lights, we walked around your room, we snuggled for hours.

In your first year, your precious little body has endured more than most and I am constantly in awe of your strength and resilience.  What would break others, only makes you stronger.  You wake up each morning and take what life has given you and embrace it with pure joy.  I see the determination in your eyes and how you take any challenge head on that we set before you.  You continue to teach us new things every day.

A few things we've learned about you this year:  You have a gentle little soul, but you also have a fierce and determined spirit.  You are feisty and sassy.  You are shy at first and take your time to warm up to new people, but once you do, you have the best time with them.  You are very observant.  You are definitely a mama's girl (makes me really happy) and generally prefer to be held by me if I'm in the room, but that's okay.  You love to crawl all over dada or wake him up in the mornings. Your laugh is infectious.

At one year, you are eating everything in sight.  Now you would prefer whole foods to your bottles and want to feed yourself whenever possible.  We introduced you to queso and tortillas and girl, there's no going back.  Some of your other favorite foods are sweet potatoes (in any form), cheese, spaghetti, and applesauce.  Right now, you're taking about two bottles a day still of formula just for extra calories but otherwise, we've made the switch to just milk and water and whole food.

You are a seriously fast crawler but can also stand up and cruise along anything and love to push your walkers and chairs around...I have no doubt you'll be walking soon.  You were officially discharged from occupational therapy right at 11 months and have made leaps and bounds this first year and we are SO proud of you.

I started taking you to a little play gym and you love to chase the other kids around and climb over everything.  Being outside is still your favorite.  You squeal and kick your legs if I mention going outside or as soon as I open a door, you crawl full speed towards it, laughing the whole way. You LOVE your doggies---Bailey lets you pull up on her and kisses your face and you like to chase her tail.  You like to throw Nelly food off your tray.

You can say mama, dada, bay-ee (Bailey), neh-neh (Nelly), GranMary, yay (with clapping) and baaaa for a sheep. You are very vocal and when something doesn't go quite as well as you had hoped...let's just say it's not hard to figure out what you do and do not like. :)  You are still not a fan of elevators or doctors/offices, but we're working on that.

You LOVE to play patty cake and sing songs, especially the itsy bitsy spider.  You still chew on everything and now have four six teeth to help you along.  Diaper changes are a wrestling match and are usually quite an endeavor to undertake....add putting on clothes to that list, too.  You are happiest right after a bath, crawling around like a wild woman without any clothes.

Sawyer, you not only light up our lives, but everyone around you.  You are the star of your own show. We celebrate each of your victories and rejoice with each little milestone.  They say it takes a village to raise a child and Sawyer, your village is amazing.  You have friends and family from all over praying for you and thinking about you each day.  We love you so much, Sawyer.  You are perfect in every way and I am so thankful that God gave me you.  Happy Birthday, Sawyerbelle.

love,

Mom

Here's a special Video of Sawyer's first year :)

9 Months! 10 Months! 11 Months! And Specialists.

First off, how is my baby 11 months already??? I can't even believe my next post will be for her first birthday!  I'm not ready...

9 Months-10 Months!

I'm grouping these months together because they kind of seem like blur to me since her surgery was during this time.  I really feel like we pulled the rug out from under her.  Prior to surgery which was about a week before she turned 9 months, she was SO, so close to crawling, like taking a few strides forward and back before rolling over or sitting up.  We even joked she would probably take off the day before surgery, but then we put a road block up.  After surgery, she had to get creative to even sit up and roll over, let alone try to crawl.  She mainly just did somersaults to get around.  That being said, her core is ridiculously strong now AND she started crawling right at her 10 month birthday!!  Considering she was born early, spent 7 weeks in the NICU, and had major surgery and was in casts for a month, I am so THRILLED with her progress.  I'm telling you, she's determined and has got some fight in her.

13 lbs 8 oz

These months she really enjoyed trying new foods.  She's tolerating pretty much all textures and basically eating anything we do, so it's been fun letting her  try everything.  Her favorites were waffles, peaches, guacamole, yogurt, potatoes, fruit and spinach smoothies, pasta, and puffs.  She loved trying to feed her self with the spoon or just getting her hands dirty and doing fist to mouth.  Obviously when she had her casts, we did all of the spoon feeding but she still enjoyed trying everything.

14 lbs 4 oz

Likes:

• bath time
• early morning walks
• Mickey Mouse Clubhouse---all smiles and giggles when the 'Hot Dog' song comes on!
• Standing

Dislikes:

• surgery
• casts
• antibiotics

11 Months!

14 lbs 12 oz

This girl is on fire!  She's crawling everywhere, pulling up and cruising, letting go and balancing for short amounts of time.  She's eating everything you can imagine and so far her only dislike is canned green beans (can't really blame her).  She loves being outside playing on a blanket, playing with leaves and grass, watching the dogs run around, and swinging.  Diaper changes are a bit of a wrestling match...can't get her to stay put and usually have to chase her down to get a diaper back on her.  She is a curious little thing and loves exploring.  We brought our other dog, Bailey, back home and Sawyer just LOVES her sweet kisses and getting to play with her.

Food-wise, she's started taking fewer bottles but more real food.  She still loves sweet potato in any form, but also loves pasta and sauce, turkey and cheese, pumpkin bread, roast and potatoes and carrots, guac and beans, just about anything.

Likes:

• crawling after the dogs, trying to find cords, pulling up on everything
• still loves bath time
• going on hikes

Dislikes:

• Doctor's offices
• elevators
• diaper changes

Specialist Updates:

We've had quite a few appointments since my last post, so let's get you caught up starting with her 10 month pediatrician's appointment.  Dr A was very pleased with how well Sawyer was doing with both eating and development.  Sawyer is still hanging out in the first percentile on the chart and while she hasn't had any "catch up growth," she's still on her curve and growing---just slowly. :)  Prior to the appointment as Sawyer began standing much more frequently, I noticed that she locked out her right leg when she stood.  I did my quick little pull down measurement method and realized Sawyer's right leg is shorter than her left.  I had Dr A confirm that for me during our visit and it hasn't been this obvious beforehand so we're not sure at what point there really became a discrepancy.  Nothing that we would do now, but perhaps she'll need right shoe inserts later on.  (Just add it to the list)

After Sawyer's surgery, her right eye (which has the coloboma) started to cross inwards much more frequently which is something we had been told to watch.  Essentially, that eye is weaker so it takes that much more work to keep it aligned and tracking appropriately, but whenever she's tired, stressed, etc, it tends to deviate inwards.  We were due to see the ophthalmologist at a year, so I went ahead and made her appointment early.  We saw Dr W again, whom we still really love, and he wasn't at all surprised that her right eye is crossing.  Honestly he said there wasn't much we could do to help it, short of surgery on the muscles and didn't recommend that until much, much later (thank goodness).  Because Sawyer's right eye has such a severe defect of the retina, patching and strengthening exercises won't help because the vision is just not there.  We'll continue to do our tracking exercises that we were already doing, but thankful patching isn't in our future.  We were expecting him to recommend glasses at this point for protective purposes, but even for those he said he would just wait another year until she would be more compliant.  The even better news, her left eye has perfect vision.  He said that eye was totally healthy and that made him very happy.

We finally had all of our blood drawn for the Trio Whole Exome Sequencing Genetics Test. Insurance approved it back in July but we've had to wait to have it drawn due to scheduling conflicts, surgeries, and casts.  Not a very good experience for Sawyer---she did not enjoy being held down and poked, but now its done and we just have to wait 6 more months for results.

And now....
Post-cast removal update!  

Sawyer's casts were taken off at exactly 4 weeks and 1 day post op.  We had a countdown going on our chalkboard and I was unbelievably excited for that day.  I had found a few other blogs that chronicled the post-cast experience, what to expect with scabbing etc,  and THANK GOODNESS I had or else Ryan and I would have been completely shocked when the surgeon took off her casts.

I gave Sawyer a dose of Motrin prior to the appointment, hoping to help with the discomfort from removing the pins---who knows if it actually did anything.  Sawyer sat in my lap while the surgeon unwrapped the casts, took off the plaster part, and unwrapped all of the old blood soaked gauze around her hands.  We started with the right hand and Sawyer was a champ---didn't cry, fussed a little bit when he took out the pin in her thumb, but overall was easily distracted.  Her hand was VERY scabby but I felt prepared for that and was super happy with the way things looked.

Then we got to the left hand.  He had difficulty unwrapping the gauze from her fingers and ended up pulling the top layer scabs off.  Oh my goodness, add this to the list of heartbreaking moments.  She immediately burst into tears and you could tell it was really painful.  Her two fingers on the left hand were very, very red, had big scabs, and where he had just pulled off the top layer it was oozing, bloody tissue.  Not to mention, once the casts were removed it smelled like a dead animal.  So the smell, combined with the raw fingers, combined with her screaming---I started to feel really hot, nauseous, and dizzy.  I made it through the pin removal in both fingers (these pins were twice as long as the one in her thumb), but once he said he wanted to rewrap those fingers and allow them to heal more, I looked back at her fingers, started seeing spots and must have turned white because both the nurse and the surgeon asked if I needed a moment.  I just calmly said I needed to give her to Ryan for the rest of this and get some water.  Mom of the year over here...I went into a corner and had a few sips of water until he finished wrapping.  If there was ever any question before, I'm certain now, I could never be a wound care specialist.  Afterwards, Sawyer calmed very quickly thankfully.  He had wrapped both hands up but told us we could take off the right hand bandages when we got home, but to leave the left hand ones on through the weekend to allow them to scab over again.  

Our only instructions were to let her play in the water often to allow the scabs to come off easily, massage lotion/oil into the scars, and encourage her to use her fingers.  We weren't expecting her to immediately start using her hands again, but to be honest, I had unrealistic expectations of how things would be once her casts were removed.  I thought she would be SO excited and just want to touch things and play again.  Nope.  For the first week she was very guarded with her hands.  Did not want to roll on the ground or play with things.  She was very cautious and tried not to move them at all.  After a week, she started using her right hand more, still not to its full potential, but still guarded her left hand.  We took the bandages off 3 days after he wrapped them like he said and it was a pretty scary site.  At first I thought the end of her ring finger was necrotic, but turns out it was just a huge scab with old stitches built up in it.  That ring finger is still very pink---you can tell that a large portion of grafting was used for that finger and it's just new skin.

Now at 2 months post surgery, she is using her hands so much more, picking things up, feeding herself,  pulling up on things.  We are doing daily coconut oil massages to help with healing and soften the scar tissue.

We are extremely happy with the shape of her hands.  Seriously, doing a before and after, I am amazed.  I mean really, let's all do a little fist pump for finding a surgeon who is not only crazy talented, but just a kind man to boot.  He told us she was not only his smallest patient, but also his bravest. :) There is still more to do on her right hand regarding straightening her now 2nd digit and perhaps thinning it, as well as closing the cleft.  We also recently went back for a follow up and it looks like she will need a second surgery on her left hand, as well.  She's not bending those two fingers at the knuckle and it's difficult to do so even passively meaning the tendons were probably not inserted in the correct location allowing them to pull and glide.  We knew there was a chance of this but were hoping for the alternative.  Again, this will be done sometime next year. 

The truth is... this has all been really hard.  I know practically every single picture I post of her is a smiling, happy girl, but she's definitely had her fair share of unhappy moments and with good reason.  The surgery was hard, the time with casts was hard, the cast removal was hard, this healing time is hard.  Our hearts break for her over everything she is having to go through, the pain she has experienced, the frustration she has dealt with, and thought of having to do it not once, but two more times!  I know, I know, she won't remember this, but y'all, that doesn't make the here and now any easier for her or make her pain any less.  Not to mention she's experiencing some serious PTSD from all this.  She used to be great at doctor's visits and now as soon as we get into a room, she gets anxious, the doctor walks in and she just immediately starts crying.   Even for non-painful exams, she looks terrified.  So disheartening.

That being said, at our last visit with her surgeon, he started discussing her surgery on her feet in November.  He took new X-rays and drew us a picture of his plans.  We felt he was slightly less optimistic about the outcome, even going so far as to say she would still need special orthopedic shoes and that the main reasons for her surgery would be cosmetic and comfort.  While comfort is a priority, cosmetics is not.  Her feet will never look normal and his description of the surgery was a little scary.

His plan was to separate her first and second toe on the left foot, close the cleft, and actually bring up her entire pinky toe so that it was in line with the other two.  To do this, he was going to remove the 2nd metatarsal from her right foot and fuse it to her 2nd and 5th metatarsal in her left foot.  On her right foot, he was going to cut/break her big toe and straighten it, then bring it in close to the 4th and 5th toes.  Here's the picture for reference. :)  

 

Ryan and I both left the appointment feeling unsettled and not confident in the decision to go ahead with this surgery.  So.....I made an appointment for another opinion. (I stop at nothing) We actually went to see the Pediatric Orthopedic Surgeon that came to visit us in the NICU when she was only 3lbs and he was just as great today as he was then.  He watched her step and walk and said he did NOT recommend surgery, that her feet were functioning beautifully and that honestly, surgery at this point would just be more scars and pain.  He did not think she would need orthopedic shoes but possibly just some soft inserts made for her left foot since it's so narrow.  He also examined her leg length discrepancy and didn't think it was a concern at this point.  He was positive, he was encouraging, and while he said she may need some minor surgery later on, he definitely didn't think it was something to be done right now. 

We still absolutely love her surgeon in Houston and are amazed at everything he does, but just don't think surgery on her feet is a necessary evil at this point so will continue on with just her hands.

Ryan and I are SO relieved and excited and relieved! We were both already  dreading her November surgery and questioning whether it was in her best interest.  Now we can just let this little girl mature and grow and do her own thing without any hindrance.  Seriously, we are so thankful.  See you back here when this nugget turns one!

love,
Team Sawyer