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.

More surgery pics

This documents the worst of it (hopefully Lily will simply be getting better and better!).

Lily is happier today, now that the anesthesia has left her system. She is having trouble sitting up from a lying down position and taking the steps up from our family room to the kitchen. She is notably subdued, wants to be held and is sitting quietly to watch tv. I am kind of enjoying this calmer version of Lily.

I had a friend tell me that I seem to take this all in stride as I was describing all of the medical care Lily has had and will have. The truth is, I don't take it in stride :-(. It is very very hard emotionally and physically to go through these things with your child :-(. I have been more stressed and anxious is recent months than ever before. I catch myself worrying about all of Lily's future procedures, her speech therapy and early intervention therapies, and more.

Of course there is so much joy and sweetness that makes it so worth it. It is absolutely a privilege to have a little person grow to trust and love you. The best.

And the Lord is holding us together and sustaining us. Today has enough worries of its own. Another friend reminded me that we need to daily surrender ourselves (and our children) to Him, and also when trials or difficulties or bad news comes, the Lord is not surprised by any of it. He knows and will be there through all of it.

In a couple of weeks Lily will have her appointment with the Cranio facial team at Ucsf again. It will be the first time Dr. Hoffman, her plastic surgeon, will see her healed palate. Please pray for this as Dave and I suspect that a fistula (or fissure) has formed near her gum line :-(. If that is so, it means a second palate repair sometime this year. We are not sure of course since (1) Lily doesn't let us look too long in mouth and (2) we don't quite know what we are looking for or how it is supposed to look. So there is a chance that everything is actually ok. I pray that that is so, but if not, I remind myself of what I wrote in the previous paragraph.

Hernia surgery

We are home. Everything went smoothly. Thank you for your prayers!

The only hitch was that Lily's surgery was delayed almost 2 hours. The surgery before hers got misbooked (is that a word?) and thus the delay. We arrived at Lucile Packard Children's Hospital at 7:15 am and she did not go into the OR until nearly 10:30am. My worry was that she was going to start getting hungry and thirsty (having not eaten or drunk anything since 8pm last night). But thank the Lord - it really was an answer to prayer, she waited patiently and did not once ask for food or water :-).

The surgery was successful and dr. Bruzoni (whom we love) also found that Lily had an umbilical hernia too that he repaired on the way out. I have some more photos I can share later.

Pray for a restful night. Lily is crabby ad achey from anesthesia and surgery.

Love,
Chenning

Surgery on Thursday

And we have a time, too. We need to arrive at Lucille Packard Children's Hospital by 7:20am. Lily's hernia surgery will be at 8:40am. Please pray for her! Thanks!

It has been this kind of week

We are all in various stages of recovering from (and relapsing to) the flu. I myself have been laid up the past 4 days with it. But thankfully the fog is finally lifting today! Aaron had it last week and seemed to be better, but then he fell asleep at dinner which is not a good sign (but very cute).

Matt has an earache and threw up last night :-(. Lily seems ok but has goop coming out of her ears :-(. I've been giving her ear drops.

Mercies new every morning. And tomorrow is another day!

Early Start

Lily had a blast during her evaluation today at Early Start. New toys, adults who are trying to engage you and play with you - she loved it! It is amazing how through play these therapists are able to assess children. Her favorite thing - bubbles!

No pictures because while she was playing, a specialist was asking me questions about Lily's skills and behaviors. Everyone there was super nice and evidently loves children. Lily was evaluated on two assessments called the Batelle and the REEL 3. She was not just being evaluated on her speech but other development as well.

She is delayed enough that she does qualify for services! I am glad that she can receive the help she needs. Besides in her expressive and receptive language, the other area she is delayed in is called attention and memory. Remember how I have written about how restless Lily is, and how she has so little attention span? How she will look at books for just a few seconds before wanting to do something else?

Our service coordinator is supposed to call me in the next couple of days to get things underway. I am excited for Lily, and hopeful for her progress.

The specialist also told me that her cleft palate and lip make Lily's speech delay more of a medical issue than a developmental issue (which makes total sense). She advised me to bring it up at the next Cranio facial team appointment with the speech pathologist there at UCSF to examine Lily from a medical standpoint.

An unrelated photo. Lily is very very into shoes right now. Anyone's shoes. She is opinionated about which shoes she wants to wear, is determined to put them on herself (which she can't really do) and if you come to our house and leave your shoes at the front door, she might come and try them on. That's what happened here. Our friend, Guga, came over and Lily was very drawn to his boots!

Pediatric surgery consult

Today we met with the Ped surgeon to talk about repairing Lily's hernias. She has two of them (bilateral inguinal hernias if you want to be technical). She has had them for as long as we know, they were noted on her medical report we reviewed about her when we first found out about her.

Surgery has been set for March 1st. They will be repaired laparoscopically meaning using a camera and two small incisions where something like extended thin "arms" will go in and put in a stitch on each side. It is outpatient and the doctor said that other than not being able to bathe for two days post op, there are not any special instructions. Lily should be up and about right away, which is awesome!

Lots if of waiting room photos because it was supposed to be a short appointment, but yikes we got there at 1:15 and didn't leave until 3:30. Lots of waiting! Fortunately, I had the whole
crew with me and they helped entertain and look after one another.

We would appreciate your prayers for Lily!