One Year Home

One year ago I could not wait for this day to come.  We knew within the first three months home that there were many challenges that could not be met apart from time.  I never imagined though that we would be where we are today.  Anna is fully integrated into our family.  She knows Natalie loves her no matter how much hair is pulled, that Tim is the go to bro for any request, that Elias is really fun.  She is secure and attached but still is fearful that when she says good-bye it may be the last time.  "More Natlee?  More LyeLye?  More Im?"  is always asked when they get on the bus in the AM.  She is brave and trusting and rests in our yes.  This repeats for grandparents, aunts, uncles and cousins.  Poor baby.  Praying that the raw pain continues to be soothed.  That the still open wound becomes a scar.  Still, there is so much to be overjoyed about and grateful for.  So much.  Then - So many scary delays.  Flipping from back to belly required the degree of effort that she looked akin to a turtle trying to do the same, the thought of walking on the grass produced sheer panic, no ability to play or focus.  Now - Forward rolls, sit down/stand up on the trampoline, chasing butterflies in bare feet through the grass and gravel, books and a flashlight to bed, beautifully imaginative pretend play.  Then - Silence: She barely uttered a sound.  Apraxia was suggested by a total of four speech therapists.  Now - Constant chatter.  She is truly making up for the 2 1/2 years of silence.  Then - Rages, lick-n-stick (her unique self-soothing behavior), heavy grieving, starting the day in the middle of the night.  Now - Incredible affection, looking at new photos of Nai Nai and talking about the sad and hurt, awesome napper (12:30-4:30!!!).  

Matt is on his way to pick up Chinese take out to celebrate this big day.  We also spent the late morning and early afternoon at the Academy of Natural Sciences.  Went through the Butterfly exhibit three times (she is somewhat obsessed...).

Children of God

Officially Finished with Post-Op!

We had Anna's second post-op check today with her plastic surgeon.  While the fistula appears to be closed it is not completely as her palate is is still "dimpled" at the fistula location.  We are hopeful that it will be closed off enough that we can put off the repair until she has her bone graft done around age 7.  Our hope comes from Anna learning to and being able to suck as well as no more food coming out of her nose.  The surgeon said that further healing is going to do what it is going to do so she lifted the pureed/soft foods diet.  Whoo-hoo!!!  That little girl is understandably DONE with pureed and soft foods.  Since the repair I think she has consumed a gallon and a half of yoghurt.  Tonight at dinner she chowed down.  She ate everything.  Peppers, tomatoes, raw mushrooms, sausage...  Our next appointment is in 6 months and that will be a team visit (surgeon, ENT, speech, psychologist, social worker, and on and on).  Everyone and their brother is how our surgeon described it today.  

Speech therapy is going better.  The therapist spoke with a number of colleagues who have experience with cleft kids and did some more thinking and looking around at resources.  The textbook arrived too and while I have just started, it is giving me a lot of hope and direction.  Anna has started with the a and o sound as well as achieving some volume control with mama.  I think she is actually using her mouth rather than her throat to produce those sounds too.  

The REALLY big accomplishment though since surgery has been that Anna learned the basics of the chicken dance.  She showed her new moves off to the University of DE therapist the next day.     

THANK YOU to those of you who have prayed for the healing of the fistula and who have passed on thoughts regarding speech therapy!  I still want to thank some of you individually yet!

Three Weeks Post Palate Repair

On Monday we had an appointment with the plastic surgeon.  She was obviously irritated that a fistula had opened up.  I asked about the possibility of the 9 days of screaming and barely sleeping causing it and she said yes, absolutely theoretically that would be a possibility.  She also added to not go down the road of "what should we have done differently" because you just can't prevent them from happening.  She said she was surprised because there was nothing that happened during the surgery that made her think Anna's chances of developing a fistula were increased.  The good news...  She thought there was a 50/50 chance that it would close on its own.  So we are praying and asking you to do so as well.  While she may be learning to swallow without having food go up the fistula and into her nasal cavity, yesterday she had less food come out her nose and today she had ZERO.  Today I am also noticing a more nasal sounding voice which (while totally backwards - it should be less nasal after the repair) is what we noticed immediately after the repair and before the fistula opened up.  Its enough to up my hope that this could heal on its own.  However we can still see a hole.  We see the surgeon again next Monday.  We talked about what if it doesn't heal on its own and I really liked her approach.  It is a bit aggressive (involves another incision but this time behind her teeth) so she wants to wait and hear what Anna does with a few words first.  If air leaks up through her fistula she wants to repair.  Otherwise we will wait and repair it when she has the cleft through her gum repaired around age 7. 

So that means we have to hit speech hard and fast to know if she needs this repair or not.  On Wednesday though Anna's SLP (speech language pathologist) was pretty direct and told me that she doesn't know what else to do to get Anna's mouth moving and air blowing out.  What?!?  She said after that she can help but as of now it is up to us to get her to move her mouth on command and blow out air.  Anna is interested and tries and tries but she just can't.  We have some tips and tricks from the SLP and we are going with them as well as stumbling on some of our own.  

Back to Wednesday.  I spent the rest of the day getting the first available speech appointments at CHOP and Theraplay.  First available evaluations are a month and a half out and I didn't even want to know how long until therapy could start after that.  So I made the appointments and then checked out Amazon and ordered a cleft affected speech disorder textbook.  I'm at a complete loss for what else to do.

Fortunately Anna is SUCH A JOY that this is just an undercurrent in our lives right now.  She undresses herself and at nap and bedtime and then repeats "uh oh" over and over until we go in and redress her.  She loves baby dolls and giving them bottles.  She dances and jumps and is experiencing sounds like never before on account of the ear tubes.  She bangs on the piano when her big sister is practicing so she gets chased.  She is just a wonderfully typical 2 1/2 year old with wonderfully age appropriate behaviors.  I never have been so happy to have a child tantrum!

Thank you for your prayers for her fistula to be healed.  If you know of any speech therapy options please pass them onto us.   

Recovery...

...is not going so well.  I'm so exhausted from this I made the decision on Friday to ditch the elbow restraints when she is in bed without consulting the surgeon.  She NEEDS to sleep and couldn't with them on.  And I mean really couldn't.  Most nights she wasn't falling asleep until the wee hours and some nights was waking up in the wee hours, unable to go back to sleep.  The hours she was asleep she was still very restless.  Most naps were no more than an hour.  The time that she is not able to sleep is spent screaming.  Just by her so far.  Not me yet.  All her screaming and lack of sleep cannot be conducive to healing.  She is also managing to get her hands in her mouth with the arm restraints on anyway.  She only puts her hands in her mouth when she is upset.  The elbow restraints make her upset so to me it is logical to keep them off.   

Her repair looked beautiful especially after the stitches had dissolved.  Gradually though we noticed it looking like it was being "sucked up" into the cleft.  No fistulas (holes) though.  On Saturday she was eating yogurt and some came out her nose.  Sign of a fistula.  We didn't want to believe it so checked and there was a anterior fistula along the indentation.  I cried.  I always said that a fistula is going to happen if it is going to happen: Outside of preventing trauma to the site, there is nothing you can do.  I still felt that there was something we could have done or not done to keep this from happening.  Maybe ditched the elbow restraints sooner?  We see the surgeon on the 21st and are of course anxious to hear what she suggests.  I suspect she will want to wait and see if it impacts Anna's speech and to what extent.  Some kids have them and are able to speak fine.  We are still so disappointed for her.  

She is drinking and eating pretty well.  She is still not back to where she was with eating but I think there may be some teething going on which would impact this.  

So Many Hands

Thursday was the big day.  Anna's palate repair.  I hope I can convey the scope of thoughts and emotions that came with this but I doubt I will be able to fully.  Going into it there were so many fears: Fears of loosing her to the anesthesia were heightened because we had no medical history, fears of a difficult repair, fears of the recovery, fears that she would develop a distrust of us...  And on the flip side there was this opportunity for a full and complete life she would not have without the repair.  We were at CHOP at 7:15 AM and were promptly wisked back to pre-op.  She cried (as she always does) when her vitals were taken but stopped quickly.  There was an issue with ENT not being scheduled to insert the ear tubes but our nurse got it straightened out and the necessary paperwork completed.  She was given a "giggle juice" cocktail (versed for those of you who care :)) and had us laughing SO hard.  Our now dopey Anna had not one care or concern.  That and the professionalism and empathy of every single person we came in contact with while in pre-op made it so much easier to give her a kiss and say good-bye.  

She was out of surgery around 12:30 and very angry.  Daddy got her to sleep the way only he can.  Another dose of morphine helped too.  She had a lot of gurgling (swallowing was now different) and soon after slipping into a deep sleep would stop breathing momentarily (breathing was now different).  She plays with hair to comfort herself but couldn't do that well now on account of the elbow restraints which are necessary so she doesn't put her hands in her mouth and rip out stitches. 

 To close her palate, two lateral incisions were made on either side of the cleft and then the cleft was sutured together.  While her palate was moderately wide, her mouth is very small.  The combination didn't make it the easiest repair for the surgeon but she said all went very well.  Her palate appears to be normal in length which is important for proper speech and avoiding future surgeries.  After being in recovery for about an hour, Anna was admitted to the surgical floor.  It was a long afternoon and evening.  There was a lot of difficulty controlling her pain.  She was gurgling and choking and would stop breathing momentarily.  It had to feel like she was drowning.  Her eyes conveyed so much raw fear and physical pain.  I will never forget that look.  She couldn't sleep because of all of this but was completely exhausted.  I kept telling her how strong she was, that she was going to get through this.  She eventually ended up sleeping for about 30 minutes after which her heart rate was lower and she was much more calm.  Her brothers and sister came for a visit and brought balloons.  She gave a small reaction that she was happy to see both.  Matt stayed with her overnight and I brought the other three home.

 

We were fully expecting to have to stay another night and her surgeon suspected this as well.  Anna couldn't leave until she was drinking and eating, and due to the pain she wasn't interested in either.  She slept for hour and two hour increments through the night.  Not much but enough that she was doing much, much better than just 12 hours prior.  Her surgeon sat with us for a bit in the afternoon and watched Anna down a yogurt and get mad that she couldn't hold her bottle herself.  Even though Anna had not drank much more than an ounce total, her surgeon thought she would be fine to go home!  Shortly after she left though the surgical resident came and checked in and encouraged us to stay another night if we didn't feel comfortable taking her home yet as dehydration is a main reason palate repairs return to the hospital.  I said, no, we'll be fine.  Should have checked with Matt first though as I was evidently feeling much more confident than him.  We ended up choosing to be discharged anyway (by none other than Kara Detweiler!!!).  It was a good choice.  After we got her through a SERIOUS constipation issue in the comfort of her own home (sorry - need it in here for the record) she slept great through the night and was eating and drinking fine today.  

 

We were astounded at the number of people involved in her surgery and care.  Completely.  The amount of talent and professionalism present in those hands went above and beyond what we have yet experienced in the realm of medical care.  I looked around at options for her repair and am so thankful doors to other places simply did not open.    

Three Months Home

We had a follow up IA appointment at CHOP on January 20.  Anna has made HUGE measurable strides, the biggest being in fine motor where she gained 10 months in the 3 months home.  The best news though was that the DR and OT were amazed at how well attached she appeared.  I attribute this to lots of unconditional love, just as much prayer, seriously good OT and her foster Nai Nai. 

She is learning as many signs as we can teach her.  Her hearing loss is starting to become an issue as words are becoming increasingly misunderstood (chair, hair; try, cry; etc.).  She is showing us an eager to please, fun loving personality.  In the below video you can see the two year old testing too.  She is signing "sit down" when she sees me watching her.  She signs and sounds "thank you" when she makes up her mind to do what I'm telling her to, rather then when she actually does it.  She does this all the time and I find it hilarious.  Don't mind that I let her play up on the coffee table.  I'm thrilled that she is able to get up and down on her own.