Cleft Surgery Appointment at Children's

Warning - lots of unnecessary pictures ahead!

We had our big appointment at Children's Hospital today.  Honestly, it involved a little bit of doctors and testing and A LOT of waiting.  This time, we waited in a big room with lots of other families.  You expect to see sick people when you visit a hospital and clinic, but it is such a different feeling when all of those sick people are children.  It makes you thankful for the health of others around you and your family's health.

The girls were good, though there was a time out or two today...  : )

First, FL went to audiology.  Since Sam is her favorite, he took her.  She did great, but there is fluid behind both ears, scarring in both and she has most likely suffered from multiple ear infections over her little life.  There is hearing loss, but they tested the bone and hopefully isn't permanent!  When she does have surgery, she will have tubes put into her ears as well.  We are thankful she can hear, though.  We saw another family get the news that their son might not have any hearing at all.  Another reminder that it could be so much worse for all of us!

These two girls missed their nap again today.  You can see how tired they are in their little faces!  Thankfully, I have tons of stickers!  We leave a trail where ever we go!

After the audiologist, we saw the speech therapist/pathologist.  Two came in and they just loved the girls and thought they were cute and amazing (which they are!).  They were glad to know that FL is signing up to three words together unprompted, talking in one to two words and singing.  They gave Sam and I some exercises to do with her to start to prepare her for her new palate and making more consonant sounds (like b and p).  Children without a palate don't know how to use something they've never had. This preparation might help her to bypass some speech therapy in the future. 

We thought we would also see an ENT and someone from the dental department, but we didn't.  Not sure as to why.  I really didn't have it all together today.   There are so many questions I thought I would get answers to and I didn't.  Truthfully, I don't even know what all of those questions are right now.  When the surgeon finally came in, the girls were slap happy, clingy, silly, short on attention and I had a really hard time focusing on what he was saying (even though Sam did a great job of trying to occupy them while the surgeon was explaining things).  Also, I was a little slap happy, clingy, silly and short on attention from having two full days of appointments and trying to make sure my children had the best possible experience with their physicians.

They understand how little these children need to be handled by others, so he didn't examine her other than looking at her cleft while she voluntarily kept her mouth open.  He was very nice and had a little fun with the girls while in the room.  He was also willing to bend hospital rules just a little and accidentally be in a picture that I was taking of FL.  I like people who are willing to bend the rules as does Flora Lin.  : )

He had a retractable name tag that FL enjoyed snapping!

This is one doctors appointment she felt she could handle!

He drew a picture and explained exactly what we would be doing, what it would look like and what it would and wouldn't change for her.  He also told us of some upcoming surgeries to expect and possible complications.  He did tell us that the muscle in FL's upper lip is not connected and hasn't been.  China did her surgery in two parts and because of that the muscle wasn't connected.  When she gets close to school age, we will probably do a lip revision and connect the muscle.  It doesn't bother her, but I feel that it is something that she will want done in the future.

FL will have a bone graft around the age of seven, and at that point the will close a little hole in her palate that they will have to leave since part of the gum line is missing.

He told us a few things to expect and a few things to prepare for.   I'd explain it all here, but I haven't quite processed everything myself! : ). I will tell you that our follow up/pre-op/ENT visit is in February and FL's surgery will be early March.

And that was that!  All done!

Once the girls realized no blood was going to be drawn, they decided to celebrate by square dancing:

Slap happy square dancing!

Delirious do-si-do!

Swing your partner!

Ok, don't swing them that much! ; )

Square dancing was too tame, so they decided disco was the way to go:

Then line dancing was in order...

Sprinkler!!!!

Whew! All that dancing wears a girl out (don't worry - I was signing and saying "yucky, YUCKY!  Stand up!")!!!

They moved on to their new favorite activity... Pretending they are crying.  It is about as fun for parents as it sounds.  Sam told them we were "all done crying" (or frying, as C says).   FL was signing "more" as was C.   : )

Thank goodness for our Dollies, Salvador and Pardon! (Yes, that's a sticker on FL's hiney)

But then the dollies had to potty and needed to be cleaned up!

Someone's Dolly pooped!

Y'all, even the Dollies were tired after these two long days...

And all four of our sweet little dolls fell asleep quickly after a late lunch.  C shushed FL and told her "Quiet!  Night-night!"   The next second she fell asleep!

FL defied her sister and was not quiet, but only lasted a few minutes longer.

And now it is time for me to sleep!

I'm thankful for a good day and a sweet, healthy family!  Looking forward to a schedule and naptime tomorrow!

Thank you for your prayers!

Three Week Appointment at IAC

We had our three week follow up appointment in Birmingham at the IAC today.  They were going over the results of previously drawn blood work, running a few more tests, following up with the family therapist, being evaluated by the physical therapist, rechecked by the doctor and Charlotte was being evaluated by the audiologist (Flora Lin tomorrow)!  Yes, makes me tired typing it!  

Charlotte did great with the audiologist and her hearing tests all looked good!  She was a little scared at first, but once she saw that fun was involved and Mama wasn't leaving, she was ready to play.  Her hearing looks fantastic!

So far, everyone is impressed with her verbal abilities just like her parents.  : )

The girls did so well with all that was being done to and with them.  I try to set them up for success by bringing things that I know they enjoy doing (and pack well).  It does mean we have to lug around a lot and we make messes, but it is a four to six hour appointment!

Things that they enjoy are a travel playdough kit, books, crayons, magna doodle, their dollies, lacing cards, taking a quick walk, and stickers!   I try to mix up what I bring each time and make sure that we don't use the item the week before we go so it stays special.

Stickers only come out on airplanes and in doctors offices.  : ). We looooooove putting stickers everywhere!

And if you can, bring a very silly Papa with you.  They make all the difference!  

The dollies are the girls' constant comfort item.  They go where we go if it is a long trip.  We always have Dolly!

Food is another big helper.  I let the girls eat as often as they want and pull out our regular snacks (fruit, water) as well as many that I don't normally give (cereal, goldfish, pretzels, yogurt puffs, juice).    Someone in particular loves to eat!

Someone else loves to play, take a walk and visit.

Now we are on our way home with full tummies from a quick stop and the girls are asleep in the back. : )  Our day had so many positives and we thank God for that!  Both of the girls had chromosome tests run just to be safe and they came back NORMAL!  Yay!   We think the girls are fantastic no matter what anyone or any test says, but we are glad to know that they both have one less obstacle in life.  With C we were checking for 22Q Deletion Syndrome which often comes with her particular heart condition (TOF).   With FL we ran a general panel because CL/CP often comes with many different things.   I have been holding the girls' hands as they fall asleep each night and asking God to remove this obstacle, should it be there.  Not for me, but for them as they have had so much to go through already and things to come as well. 

 Thank you, God, for hearing this mama's prayer and giving me peace while I waited.  

 And please don't get me wrong.  If one or both of our daughters had a syndrome, we would still feel that God is with us, answering our prayers differently than we wanted, but still acting according to a bigger plan that only He understands.

C is having some issues with her left hand being much weaker than the right, though it does function.  They are unsure as to what caused this.  It could've been a small stroke, an injury or lack of using it for some unknown reason.  Something that they noticed that I didn't see was something off in her running gait.  I just thought it was the run of a little prissy girl, but she's not picking up her feet correctly and almost swinging her legs.  It is very subtle to me and doesn't seem to inhibit her running at all.  The trouble with it is she compensates so well and functions so well that she most likely would not qualify for any therapy.  I'll have to put on my thinking cap and come up with some ideas to do at home to try and help.  : )  In six months we will revisit it and see if she needs intervention, an MRI or nothing at all.

As for fine motor skills, both of the girls are on target.  FL has a few gross motor delays, but they were surprised how well they both were doing.  They kept saying, "You know they are not supposed to be doing this well, right?!"  : )   Having C as a big sister has helped to motivate her to do more.  They both compliment each other and help each other to grow in so many ways.  It is really wonderful to witness firsthand how God is working in their lives as individuals and sisters by bringing them and us together as a family.  There is a lot of brokenness in adoption (and life in general) but God can do such beautiful things with the ashes of the lives of His children.

So, all in all our appointment was very positive and the girls are on track to grow and progress, even with a few little hiccups. The farm has been a blessing in helping them to improve.  I am also thankful for all of you who gave monetarily, gave books, learning toys, supplies and so much more.  We've used them each and every day.

Tomorrow we meet with the cleft team. I am excited to have a plan to help Flora Lin and restore her health fully.  Though her surgery is a little daunting, I am ready for her to talk and she is, too!  : )

We're so thankful for your ongoing prayers.  We will let you know our plan when we have it. : )

We're On Our Way!

Weve got a big appointment in Birmingham today and tomorrow.

We have saddled up and put our cowgirl boots on:

We've got our Dollies and a good attitude :

 We've prayed all we can pray (and ask that you pray for us, too!).  God is with us, but according to Charlotte and Flora Lin, cowgirl boots really help! : )