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.

The Two Littlest Ones

When Matthew and Nathan are gone in the mornings at Chinese class. I just have these two little loves with me.

This is the face Lily makes if she sees me with the camera. "Cheese."

Much better.

I don't know why, but I love these little jelly shoes. I remember how these were "in" when I was in sixth grade. This pair were hand me downs from another mama to girls.

Lately, though, Lily has had a bit of a love/hate relationship with shoes. My other kids went through this phase too. Anytime we go anywhere in the car, by the time we reach our destination - both shoes and socks have been taken off and strewn all around. But. . . she will still continually try on her different pairs of shoes when we are at home. She also still tries on everyone else's shoes, too, and tries to walk around with them on.


Airplane overhead! This wagon is one of Lily's favorite toys these days. She loves to sit in it, would prefer to have someone with her in there, and have me (or an obliging big brother) pull her around. Sometimes she asks me to sit in it and will try to pull me around :-).

Another favorite toy these days. Plasma car that was given to us by the Yee family when we got our travel approval to go to China. She has figured out how to drive it and likes to go all over the place with it.

And here's Aaron! Sweet little big brother. He is very protective of Lily, and jealous for her affections. He will get into a funk if it seems like she is paying more attention to someone else.

He is strong and agile enough now to dig with this big shovel in our backyard. And quite proud of himself, too. He asked me to snap this photo of him digging :-).

Aaron has been so patient. Many times, he is the only one unfortunate enough to have to accompany Lily to her medical appointments. He never complains. He always asks, "Is she going to have a shot? Is she going to have something that hurts?" He has had more doctor's visits with her than I think he has had in his entire life.

Hope you are having a great Sunday!

Nit-picking from a Couple of Weeks Ago

What in the world is Dave doing here?

Nitpicking.
Yes, literally nit picking.
We have had our second infestation of lice in 4 months :-(.
Our dear family friends found out they had it first, and since our kids had been playing together that last weekend, we decided to check our kids. . . and we had them, too.
After the lice shampoo and combing with a special comb, Dave went through wearing his special "loops" he wears to do surgery to have a magnified view of our scalps.
We invited our friends over for a nit picking party. That's John holding the flashlight for Dave, and his son, Nicholas who is being nitpicked. Nickyu's brother, Justin, is looking on.

Thankfully, we are all in the clear now :-).

The funniest thing is that now Lily thinks that this is just a normal part of life. She will routinely come up to me and ask me to check her hair for lice :-).

Links I Love

Thinking of adopting? Worried about the cost? Maybe you want to, but your husband is more hesitant? Check out this youtube vid by an adoptive father. . .


Also, I love the band Sanctus Real. Here is a song sung by the lead singer, Matt Hammitt. His baby boy was diagnosed with heart defects in utero. This inspired him to write this song - "All of Me." Although Lily doesn't have heart defects, she does have some special needs. This song reminds me not to hold back in loving her - just the way she is - even if she never becomes a "typically developing" child.


Are you a mama who is suffering some sleep deprivation? Kids got you up at night?
Here is a wonderful perspective written by Linny from A Place Called Simplicity (on my sidebar, one of the blogs I love to read).

Some artwork by my 2 big boys

We had a rough month in February - but so thankful for God's amazing grace at all times.
Some things we have been up to. . .

Matthew and Nathan have been studying artists and imitating their techniques at their homeschooling co-op (Classical Conversations). I thought they did a beautiful job with watercolors.

This is Nathan's version of an Andrew Wyeth painting. It shows a house with snow falling. The snow was made by dabbing rubber cement on his original drawing. When you do watercolor over it, the rubber cement resists the paint. After the watercolors dry, you can rub off the rubber cement very easily.

This is Matthew doing a watercolor in the style of Georgia O'Keefe. Right when he showed it to me, I knew - Georgia O'Keefe - the lady who paints huge flowers.

Clarification

I realized that I wasn't that clear about Lily's surgery.

The photo from two posts ago shows her surgery site. Those three little steristrips show where her hernia was repaired laparoscopically. That means that the surgeon made pin sized puncture wounds and used something like a very thin metal "arm" that could go on and sew up where the defect was and push and pull everything back to where it belongs. They also inflate the abdominal area with air so that they can work in there. A small camera was inserted through an incision made in her belly button so that Dr. Bruzoni could see what he was doing. If you go back and look at the photo you will see some redness and stitches in Lily's navel. Laparoscopic surgery is less invasive and quite amazing! Also with the camera, Dr. Bruzoni was able to see that Lily also had an umbilical hernia that he was able to repair while he was doing the inguinal ones.

If you look at where the steri strips are, you can see that her hernias were located at her lower abdomen. We got photos that were taken during surgery, and Dr. Bruzoni showed me Lily's ovaries and her uterus. Very incredible to see them. And wow! She's really a girl :-). Just quite cool to see her girl organs as it were.

I apologize if this is super medical and technical. I realized based on a comment left that I wasn't very clear. And being the kind of person who likes to understand what is going on, I thought I would share what has been explained to me.

A commentary about comments

I am blessed by your comments.
I know that it is not the easiest to leave comments on a blog in comparison o Facebook or Instagram (I'm not on Facebook so I am taking people's word for it), so I appreciate it deeply when you take the extra time to respond and leave me a message :-).

I read every single comment, and am truly encouraged by each and every one.

Speaking of instagram, if you have an iPhone you can follow me there too. My user name is chenningpeng.