Look for this series of events on the next bad-parent lame sit-com!

Joseph really outdid himself today during his first speech therapy session with his therapist.

This little guy looks stinkin' cute, right?

Looks can be deceiving.

Joseph qualified for Early Intervention Speech Therapy, so that means that the speech therapist comes to our house twice per month and works with us as parents to work with Joseph and gives us "assignments" to work on with him until next session.  

Yesterday's session started with a bowl of water, a pile of cotton balls and straws so that Joseph could learn to blow air out properly through play and games.  It ended with a kind therapist gathering her things as quickly as possible and dashing for her car as a broken-hearted 2 year old sobbed alligator tears while 90% naked.

Here is what happened in-between:

• Joseph thought that throwing the cotton balls at the therapist and screaming was more fun than her game
• Joseph spilled most of the water all over himself and wanted dry clothes
• Joseph did not like the clothes I brought downstairs for him (even though they were his favorites 3 days ago) and would only cooperate with any requests if he was naked except for his diaper
• While the therapist was trying to give Larry and I some instruction, Joseph was insistent that he had to "oop" so I excused myself for a 2nd time and took him to the bathroom where he peed a few drops and demanded M&Ms for the huge effort of it all
• Joseph raced back to the therapist (yes, a literal race which began with a "reddy, et, ooooo!!") and then he wanted to hug her and sit on her (while only diaper clad).  
• He then began tugging at my arm (while I was trying to talk to the therapist) insisting "um on."  I excused myself a 3rd time and I followed him up the stairs where his "come on" lead me to discover that he wanted to wear "unts" or "underpants."  I told him "not right now" and raced back downstairs.
• While trying to talk to the therapist again, we heard Joseph in the hallway and tried to call him back to us.  He wouldn't come, so I excused myself a 4th time to find him in the hallway completely naked and very proud of himself.  (The DC area broke several century-old low-temperature records today and yesterday, but apparently naked was the way to go with balmy single digit temps.)  So, I put him on the potty where he peed a decent amount and put this "unts" on him.
• An underoo-clad toddler re-entered the scene as the therapist was trying to explain the usual progression of sound development and then he quickly left again.
• The underoo-clad tot reappeared in the 2nd floor office loft above the living room and then peed all over the carpet.  
• The rest is a blur of the therapist trying to assure me that this is all normal boy behavior Larry rushing for a pile of towels, and her rushing for the door!

*sigh*

Cleft Palate Surgery

Joseph, as he literally ran all over
the pre-op wing in his hospital booties

Wednesday morning we left our house at 4:40 am to get to VCU's hospital in Richmond.  Joseph's surgery was scheduled to start at 7:30.  By 6:30, we were in the prep area meeting all members of the team, signing final paperwork, and getting last-minute notes from the wonderful Dr. Jennifer Rhodes.  The whole time, Joseph was a terror on two legs, running all over the place and if he was held or kept from running, he screeched and squawked.  I think that caused the anaesthesiologist to give him the happy juice sedative a little earlier than planned, but he got all loopy and drunk and yet was still pretty insistent that he should still be running around.  Then at 7:30, she (the anaesthesiologist) carried him down the hall, followed by other members of the team.

At 7:50, the ENT came out to talk to us.  She said that, given the amount of gunk she had to remove from his ears before she could place the tubes, Joseph was suffering from a not-minor hearing loss before the tubes.  Larry and I had been speculating that this was the case, given that he wasn't able to repeat many sounds we made or even register sometimes that we were making sounds.  

"Hey look at this"
Joseph's happy juice finally was taking effect

At 10:00, we met Joseph in the PICU with Dr. Rhodes.  We were so happy that she got a private room for him in the PICU for his recovery and stay.  The cleft was in his soft palate and was 7 cm wide, I think she said and she had to use some cadaver material to get it to close and that she had to work around an extra blood vessel that he wasn't supposed to have, but other than that, it went perfectly.  She was pleased.  Then she told one of us that we should go home and sleep and leave the other parent at the hospital until tomorrow; it was going to get bad sleep-wise after we got him home.  Larry quickly jumped on this chance and sped away, leaving me with our drugged boy.

The next 18 hours were a cycle of Joseph waking up, freaking out, pulling at his wires, yanking on his IV, and the nurse giving him an anti-anxiety medicine that put him back to sleep.  Our nurse, a mother herself, was amazing.  I couldn't have asked for a better, more caring, compassionate, going above and beyond nurse than Jenny P.  She really cared about Joseph and me, making him and us comfortable.  (I say "us" because he spent most of those 18 hours sleeping on me in some position or another.  It was like an international flight.)

First day home and he had to
vacuum the playroom.  

First meal back home:
big surprise, it is Ramen
This is about 28 hours after palate surgery!

Then, at 4:00 am, Joseph decided he was DONE.  He was sleeping on me belly-to-belly and he lifted his head and kissed me two times and smiled the sweetest smile at me, as if to say "Thanks for taking care of me." His IV was swollen so the night nurse removed it and broke the cycle of needing anti-anxiety meds to deal with the anxiety inducing IV and wires.  This was only possible because they were managing his pain only with Tylenol and Motrin by then.  He ate 2 pudding cups, 1 yogurt, and drank some juice.  He wanted to play.  He wanted to be all into everything.  This is when it got hard. He was still dopey and so when he tried to move any faster than a turtle, he fell over.  The staff wanted him off of the germy floor, but he wasn't staying seated or on the bed for another second.  That began a long 6 hour slog until discharge time where I tried to keep him from licking garbage cans, running into other kids' rooms, playing with the dirty mop water that the orderly was rolling down the hall, throwing his cream-of-wheat covered spoon across the room in protest of not being allowed to pour the cream of wheat on his head... you get the picture.  I spent this time telling everyone in the hospital that we needed the discharge papers getting written up NOW because we weren't waiting until 2 pm this afternoon to get this high energy kid out of the confines of the PICU.  It worked.  Larry finally showed back up after 9, Joseph was allowed to be discharged at 10, and a few minutes past, Jenny brought us the papers that could have been written on gold: the discharge papers.  It was wonderful.

Since then, Joseph has been mostly happy playing with his toys, playing outside, playing with his sister.  However, he is not sleeping.  Not enough.  Not even close to enough.  Larry and I are again split into 2 shifts:  he has the night shift and I have the morning shift, which isn't how these 2 teachers wanted to spend their summer break.  Larry finds himself up at odd hours in the middle of the night, playing with a wide-ass-awake Joseph, I find myself unable to get up and enjoy a morning run when I "sleep in" (as Larry calls it) until 6:30 because Larry needs to get to some sleep and Joseph is, you guessed it, still wide-ass-awake.

But keeping the important things in mind, such as we only had 24 hours in the PICU and some families have to see their kids suffering in there for days or weeks or months for various conditions.  We are lucky.  Also, we are hoping Joseph heals nicely, starts to get speech, and it feels like now he can really begin his life in America.

A few other thoughts:The two sweetest things happened during our time in the hospital together:  one was that as he came out of his haze, Joseph planted 2 sweet kisses on my lips when he woke up at 4:00 am and the other was that 2 times he called out "mum mum!" to me as he came off different sleeps and wanted me to hold him.
Abigail's palate was fixed in China. Who held her for 18 hours after surgery?  It makes me sad.

One Week Past Surgery

Abigail playing with her cousin
the weekend before her surgery

One week ago, we were at Children's National for Abigail's lip and nose reconstruction surgery.
She had an initial surgery sometime between 5 months old and 8 months old when she was in China and, although it was done by an American surgeon who was on a mission trip there, it was a functional fix but not an aesthetic one.  Our amazing surgeon at Children's National said he does similar trips and often gets only about 20-25 minutes per cleft kid, but in America, he spends 3 hours on such a surgery to do A+ work.  

Two nights before her surgery, Abigail
was wound up at bed time and insisted
I take a picture of her.

The goal of last week was to give Abigail some symmetry to her already adorable and beautiful face.  I'm not going to blog the details or post pics until her stitches are out in order to protect Abigail's privacy.  (However, if any other parents of CL/CP kids are going to be facing a reconstruction surgery, please feel free to PM me.)

So it has been a long week, but kids are so resilient and Abigail is doing great.  Kids just go through things way more easily than adults do, I think.  Abigail is so brave and spunky.  I have been so proud of her this past week.

Yearly Cleft Clinic

Today was our yearly cleft clinic for Abigail.  The first 2 years she attended the MUSC cleft clinic in Charleston, SC.  Since we have moved, we got into the clinic at Children's National Medical Center in Washington, DC.

Our amazing little nerd reading a book about
Assateague Island horses

During her 4 morning sessions, Abigail saw the audiologist, the speech therapist, an ENT, and the dentist.  It was discovered that her right ear tube is out and is causing hearing loss in that ear, that her speech is excellent for a kid her age ("three" sounds like "free" for example) but all of her possible troublesome cleft sounds are fine.  (Although, it did take a home video and a mini bag of Doritos for the speech therapist to get enough info about Abigail's speaking abilities  and don't you dare judge us for bribing!!)

After a quick lunch break, Abigail saw the plastic surgeon and then fell asleep in Larry's arms for our sessions with the psychologist and the geneticist.  

Lar and I were not initially blown away by the team:  they weren't bad or anything, but from what we have experienced, audiologists and speech therapists are a special breed of patient, saintly people and must be like that everywhere.  ENTs are all business, which is their job, so that is good too.  So given the horrible traffic (it was 1.5 hours to get there and 2.5 hours to get home!!) we were thinking of switching to the Richmond clinic next year.  Then we met Dr. Oh (plastic surgeon) and the British psychologist, who sounds like a genius just because of her accent and we were hooked on the DC clinic.  

Recent family pic

Abigail was such a trooper, really.  Larry and I were incredibly proud of her, how she behaved, and how she comported herself.  She cooperated all day (besides the little bribe in the speech evaluation) and was polite and not moody or difficult.  Then she peacefully fell asleep in her Baba's arms, which just made him melt.  
I also know that I am lucky beyond belief that this amazing, intelligent, funny, clever, beautiful, creative little individual is my daughter.  Not a day goes by that I don't think about that.  And when I am in a children's hospital all day, and I see the Huge problems that so many kids are facing, I am scared out of my mind at my  own good luck and fortune.  I can't even wrap my mind around it sometimes!

Unknown Boo-Boo Identified, 17 Months Later

For those of you who have been following this blog since we first met Abigail in China, you may have remembered this entry "Guess Who Has A Boo-Boo".

We now know the name of the mysterious boo-boo she had in China;  it was a paronychia, which is basically an infection that started under her fingernail and then grew to a full-blown infection of her finger.  


How do we know this?  Because on Tuesday we had to take her to the emergency clinic because she has another one.  The nice P.A. at the clinic cleaned her finger and then carefully lanced it.  We distracted Abigail to look away right before the cut was made and all of a sudden her eyes got very wide and she said "OWIE?"  Yup.  She asked it as a question, as if to say "Is this what an owie feels like?"  


Poor kid.  Larry and I would have been laughing if we didn't feel so sorry for her.  Then she forgot to breathe for a moment or two and when she remembered to breathe, she sucked in all the air from the room and let out a scream to alert everyone else at the clinic that she was there and she was in pain.

This whole saga happened just hours after Abigail was at the MUSC Craniofacial Clinic for her annual check-up by the whole craniofacial team (cosmetic surgeons, orthodontists, ENTs and ENT surgeons, pediatric dentists, and a speech therapist are among members of her team).  In one afternoon, she gets to see all of these specialists in one place.  It is a great program and we will certainly miss it when we move.  Abigail got all positive reports from every specialist but we were most happy that the speech therapist was very impressed with her and her speech and vocabulary.  (Of course, given that Abigail is going through a shy phase, she did very little talking in front of the speech therapist.  However, I anticipated this problem and brought several short videos of her talking up a storm at home, mastering some difficult sounds like F, B, S, and T.)

Quite a Surprise

Today our agency sent us an update on Abigail. She has gained 6 pounds in the past 5 months, is 2 inches taller and they sent a new picture too! In it she is sitting and she is clapping and it looks like she is looking at someone to the side of the camera, like she is copying their movements. The big surprise though, is that her cleft lip has been repaired! (We don't know about her palate.)

This is amazing!!