Lily's Voice Part II

I took a couple of quick videos of Lily's speech therapy session yesterday at Lucile Packard.  You can watch the video to get a better idea of how Lily speaks :-).  Her speech pathologist is April, and she rocks!  We all like her very much, including the boys who come along almost every time. 

And one last one - a video I took this morning of Nene and Lily jumping around on the bed.  You can see what a loving brother Nathan is, and how Lily loves to imitate him and play with him.

Lily's Voice

I am going to update you all on how Lily's speech is coming along.  Before we adopted Lily, we knew she had a cleft palate and a repaired cleft lip, but we did not know how profoundly that impacts one's speech development.  Even after her palate was repaired in December, she did not seem to be making that many new sounds.

In February, she began early intervention therapy with the county's Infants and Toddlers Program (Early Start).  Once a week, a teacher comes to our home for an hour, and engages Lily with games to help her learn to attend to a task (girlfriend is SUPER active and is almost never still - but has come  long LONG way in the last few months), while all the while working on having her produce sounds.

As you can see, Lily has a lot of fun during these sessions, and big brothers can join in, too.

The parachute is a favorite activity that they get to do.  Aaron and Lily are singing "Twinkle Twinkle" while Lorraine (our teacher), and Nathan are holding it over them.  This is the only time that I have taken pictures instead of participating.  The program is actually for the parents - and it is necessary for a parent or adult to be present at all of the sessions.

Lily helping to put the parachute away.

Lily also began speech therapy in April with a speech pathologist who specializes in velopharyngeal inadequacy at Lucile Packard (Stanford's children's hospital).  30 minutes once a week.   She has made a lot of progress in the past few months.  Some of it, I am sure, is because she is settling in more and probably over the shock of transition and now able to learn and grow freely.  Some of it, though, is definitely because of the implementation of these two programs that are a regular part of our weekly routine.

This will probably be boring to everyone else - but I will record it here so that we can keep track of her progress. . .

Now, Lily can make these consonant sounds in isolation:
B, D, G, K, L, M, N, P, R, S (distorted), W
CH (distorted)

She has a lot of trouble if they occur at the beginning of the word.  She is unable, still, to blend them into the rest of the word.  So, she can say, "D" (like duh) in isolation, but then if I ask her to say "duck," she will drop the "d" sound and say "uck."  At the end of the word is better.  April (her speech pathologist) explained that it is harder to blend the beginning consonant because you need to sustain air flow (and she is still learning how to stretch her soft palate to block off the air that would escape through your nose when speaking).  Haha - take all this with a grain of salt.  This is what I understand - but I could have many mistakes in my explanation.  This quote by Einstein is SO TRUE.

And that's how I feel about this cranio/cleft/speech stuff.  But praise the LORD - He understands everything that's going on with Lily's body and with her development.

Lily has really found her "voice" in many ways.  In the last couple of weeks, she has started yelling for me from across the house.  "Mamaaaaaaaaa!"  Although it is not the best habit to get into, I love the fact that she has now realized the power of words.  You can communicate and make things happen by using your words.

Even without being able to say much, Lily says SO much in other ways.  She knows many signs in ASL, but besides that - she expresses her opinions with body language, pointing, bringing me to see what she wants to show me, and by her expressions.

Thank you always, for praying.

A couple of weeks ago, our pilot light went out in our hot water heater.  The PGand E man came to relight it.  When he saw Lily (who was on my hip), he immediately asked, "Does she have a cleft lip?" The reason he asked, I found out, was because his 15 month old daughter has a cleft palate (repaired).  We shared our experiences and talked about speech stuff.  He said to me, "They will talk when they are ready."

We will wait, dear girl, for you to be ready.  In the meantime, we rejoice with every new sound, every new word, and every step you take.

Cleft 101

Before we met Lily, I had never seen a cleft palate. I had seen many cleft lips before from Smile Train advertisements and from numerous referral photos on Chinese adoption sites. I want to share with you and document what an open palate looks like:

Ok - this is not the best photo. And forgive the amount of boogies that are in poor Lily's nose! But I think you can see the cleft in the roof of her mouth. She wasn't terribly cooperative as you can imagine for the taking of this photograph. This was back in October of 2011, shortly after she came home. If I could have gotten a better shot, you would be able to look up into her cleft and see her nasal bone. Lily had a bilateral complete cleft palate - that means that there were two clefts in her upper lip, gumline, and hard palate - and the two clefts fuse into one large cleft when it hits the soft palate. That is what you can see here - the one large cleft towards the back of her mouth.

Here is a photo of her from about a week ago. As you can see (more or less), the palate is repaired - looks like one piece - and it is. Dr. H did a three flap palatoplasty to close up her cleft.

Again, forgive the boogies! I promise she doesn't always have a runny nose!

And I wanted to show her cleft gumline. You can't see it when her mouth is closed, or even when Lily smiles because her top teeth do not show when she smiles. I think this is pretty typical of cleft affected children in the early years after lip repair - the lip is just very tight and does not have a lot of "give."

So. . . Lily's gumline is cleft on two sides. You can see here how her top middle teeth and gums are kind of on an "island." There is a cleft (gap) on either side, kind of where your canines would be. Her top jaw is essentially in three pieces.

When she is 8 or 9, Lily will undergo a surgery that will graft bone into those gaps to reconstruct the gumline. They time this surgery with the emergence of her permanent teeth in that area. When it is all done (the bone graft surgery and lots of orthodontia) - her gumline will look more or less like a typical person's - one piece with straight teeth going all the way across. I am documenting this now because I know that someday I will forget what her gumline looked like. I am already forgetting what her cleft palate looked like!

In order to get these last two pictures, we had to persuade Lily to open her mouth by having all of the brothers get their mouths photographed. Here are some of those photos hee hee.

Silly brothers! But it worked :-).

Cranio Facial Team Appointment

Another one of Lily's favorite things to play with: a box!

It has been a little more than 3 months since Lily's palate surgery, and a little over 5 months since the last time we had a team appointment at UCSF.

Just to give you a little idea of how crazy life can be at our house. . .
Dave and I had planned a while ago that both of us would be there are her appointment. We asked 5 months ago for a Monday appointment since Dave's Mondays are a bit more flexible schedule-wise. So, Monday, March 12th at 8:30 am has been on our calendar for literally months. We had made arrangements to drop off the two older boys at a family friend's house at 7am so that they could drive the boys to Chinese school which starts at 8:30am. We had made arrangements with another family to pick up the boys at noon. These team appointments can be long, so we were not sure when we could come back to pick up the boys. Aaron, of course, would be in tow, armed with his trusty iPad to pass away the time at the clinic.

But our whole plan went into file 13 though.
At about midnight on Sunday night, Dave and I noticed a glub glub sound coming from our bathroom. Then sewage started backing up out of our master bedroom toilet. When Dave investigated outside, he saw that sewage would make a puddle in our side yard every time there was a flush. Dave, bless his heart, was the one who cleaned up the back up on our bathroom floor. Thankfully it did not reach the carpet. I told Dave that I HAD to go to sleep as we decided Dave would stay home the next morning to call the plumber. I knew that I had to wake up at 6:30am at the latest (which would feel like 5:30 because of the time change just the day before) in order to get on the road by 7am in order to get to UCSF with ample time to park (not an easy feat) and walk to the clinic. I half slept while hearing Dave exclaim and mutter every now and then, "This is so gross," as he was on his hands and knees wiping up and disinfecting the mess in the adjoining bathroom. Yes, I have a wonderful husband!

Anyway, Dave ended up taking the boys to school and keeping Aarbear. Lily and I went on our merry way the next morning and made it to the clinic on time.

We saw the speech pathologist, the geneticist, the dentist, and the plastic surgeon. I won't bore you with too many details. . . but basically, here is the news:
1) No fistula! Woohoo - you know we were worried about this. The two little holes near her gumline are supposed to be there and will be repaired with the bone graft when she is 8 or 9 years old.
2) The geneticist feels that since Lily is developing well over all and making good progress (and the fact that her microarray came back negative) that the cleft is an isolated issue. He says he will see her at one of her regular team appointments in 18 months! Yahoo!
3) The speech pathologist is concerned that Lily's palate may be too short. It was hard to get speech samples because my Lily girl was very apprehensive of strange people asking her to perform on cue. Doctor's offices are places of suspicion (understandably so!). However, I told a bit to the pathologist about how Lily has not had many new sounds, even since her palate repair. She took a look (while Lily screamed bloody murder) and said that the palate looks "a little short." The concern is that if it is too short, she may have something called velopharyngeal insufficiency - which basically means she will not be able to block air from escaping into her nasal cavity which will make her unable to produce many sounds. The only consonant sounds that Lily can make right now are: m, n, w, l (kind of), y and b (although it sounds more like m).
4) But then, when the plastic surgeons and the dentist looked at her, they said that her palate looked ok - for sure not a cut and dry case where we could say it is too short. Also, they said that 3 months post op is way too soon to tell. And that since she had her surgery later (21 months as opposed to most U.S. born cleft babies have their palates repaired by their first birthday), the speech would be slower in coming. The muscles would also be slower in functioning properly. When I asked Dr. P, "So. . . it is too soon to worry." He answered very reassuringly, "Don't worry."

Ha! I am trying not to :-).
I have to admit I was a bit teary when I heard that my daughter may have VPI and need another surgery to correct it. I think that I just need to trust the Lord with this. I have been praying, "Lord, please help Lily to learn how to talk." But I think now I should change my prayer to, "Lord, please give me peace to trust You to take care of Lily."

When I shared some of this with a friend, she told me, "Lily is happy and loved."

Yes, that is true. She is both of those things.

We are going to try a short course (6-8 weeks) of speech therapy with a speech therapist who is familiar with clefts. We should know more at the end of that time. VPI is difficult to diagnose, and there is nothing that the surgeon would do at this point even if we knew for sure for sure that she has it. It would be likely close to a year before operating on her again. So - the Lord is asking me to wait on Him. Have I told you how I really stink at waiting? I do. There is nothing to be done but wait.

And trust Him.
And love on Lily, and nurture her and communicate with her in our own special way. The girl is VERY communicative, even without a lot of spoken words.

If you remember, please pray for Lily (and me - I think that all of this is showing me, it's ME not her that is having a hard time with this). I know that the Lord has special grace for little girls and moms of many children.