The Ups & Downs

Palate surgery has its Ups & Downs. So for those of your who may have it in your future and just for the record, here are a few of them.

Up: It's pretty hard to make a small patch of smoothies but at least there is plenty to share!
Down: We have wasted quite a bit of smoothie. I have some in the freezer now to see if it's any good when it thaws out. Wish me luck :0)

Up: I'm eating a lot less than normal and may shed a few pounds through all of this.
Down: It's only because I'm trying to hide from a hungry toddler while I choke down half a sandwich in 30 seconds.

Up: KayLi hasn't complained nearly as much as I thought she would about not being able to eat solid food.
Down: She complains plenty when she hears the blender or sees me coming with yet another cup in my hand.

Up: For the first time in a couple years I'm reading a book that isn't related to China or adoption.
Down: I'm reading it while sitting on the couch beside KayLi, trying to make sure her feet in my lap don't send it flying across the living room at any second.

Up: Saline spray is a great decongestant, that is very inexpensive.
Down: We have been using it for five days and she is just now learning that it's easier to be compliant, than to be pinned down and tortured by this evil spray that is clearly the invention of Satan himself. Oh, and she thinks it's hilarious to spray it in our noses once she has had her sprays but that's not really a "down" is it.

Up: Allie has KayLi thoroughly convinced that Carnation Instant Breakfast and Ovaltine are "Candy Milk". This has made these drink the best ever!!!
Down: I may be organizing a "Candy Milk" intervention by the time we are back on solid food but right now it's so worth it!

Up: Jello is considered a liquid and makes a great bribe dessert!
Down: You have to feed it to her by having her tip her head back, open her mouth and letting a small amount slide off the spoon into her mouth. Think "baby bird getting a worm" because the spoon CANNOT go in her mouth. This can be a little messy when the baby bird REALLY wants more than a small amount of jello. But again...it's so worth it right now!

Up: KayLi is content as long as Sesame Street is on with it's ever glorious promise of Elmo's World at the end.
Down: We have 16 episodes of Sesame Street recorded on the DVR and she has watched each one more times than I can count. The theme to Elmo's World was actually part of my dream last night.

Up: KayLi has discovered that "Ni Hao Kai Lan" and "Yo Gabba Gabba" are fun to watch too. Previously she would ONLY watch Sesame Street.
Down: That guy with the orange hair on "Yo Gabba Gabba" really freaks me out! Seriously. Freaks. Me. Out!

Up: KayLi is speaking more clearly and it has given us so much hope about how her speech will improve even more after speech therapy.
Down: She is saying things like "Mommy where are you?" if I leave the living room for the briefest minute. And sadly "KayLi hungry." You would be surprises how often food & nutrition are the topics of the previously mentioned television shows. There is NO party in KayLi's tummy :0(

Up: I am being reminded of what it is like to have a new born. Such a sweet time.
Down: I am fixing "bottles" every two hours and no one in the house is getting any real sleep. Well, except Emily...she's practically a teenager and could sleep through anything.

Up: KayLi is now able to blow her nose! This is HUGE! She even likes to do it by herself.
Down: She hasn't figured out how to get out one tissue at a time, which results in tissues all over the living room.

Up: We (God, please let it be so) only have eight more days of a liquid diet.
Down: We have at least eight more days of the liquid diet.

Up: This WILL pass and become a memory. One that I pray KayLi is able to forget.
Down: There is no "Down" for this. I know it Will pass and when it's over, it will be amazing to see the way God is healing and transforming this precious child.

The Rest of the Story

Yesterday I posted about how happy KayLi was to be home and about how great she has been doing. So now that I have gotten a little sleep I thought I would tell the rest of the story.

They had told us that the anesthesia would take anywhere from 18 to 24 hours to get out of her system and I'm very thankful that it only took 15. They were long hours. The nurses kept reassuring me that her pain level was not very high. That the medication she was taking was taking care of the worst of it. It was hard to believe them though because KayLi woke up about every thirty minutes crying. Really crying. She was scared and disoriented in a heart wrenching way.

The highlight of our night was when a nurse brought KayLi a small crocheted blanket and a super huggable stuffed cat. Both had been donated to the children's hospital and actually made her smile! I never knew such simple gifts could mean so much. She wraps the cat in the blanket and puts it to bed...such a sweety. Many heart felt thanks to Project Linus for your kindness!

Around three in the morning she (we) finally slept. Unfortunately only until 6am when she wet the bed and drenched us both. IV fluids and Tyelenol with codeine are a bad combination! After we got things set right with the world she slept until 8 am and woke up almost 100% KayLi. Only now she has the sweetest voice ever!!!!

The surgery itself went beautifully. I think the world of Dr. David Genecov and his team. I really can't say enough about the International Craniofacial Institute in Dallas. They are simply awesome. I'm so thankful that God lead us to them. They have published a small book that is a great resource if you are considering adopting a child with a cleft lip/palate. If any one is interested in it, just email me and I'd be happy to mail it to you.

We had been uncertain about whether we would stay another night in Dallas but when they said we could go home WE DID! KayLi had asked to go to "KayLi's house" several times throughout the night and we really wanted to reassure her that she could go home again.

Now that we are home a liquid diet is our biggest challenge. Instant oatmeal thinned down with milk was are first attempt at it on our way home. Followed by a Mc Donalds milkshake, also with extra milk. Once we got home we tried "blenderizing" chicken noodle soup. Even with Emily excitedly drinking with her, it didn't go over very well.

Later we tried a yogurt and frozen raspberry smoothy and she loved it. Today I made thin potato soup with chicken broth that we all loved. I've been told that after a week or so I will throw anything in the blender.

When I blended some yogurt and strawberries today. KayLi just laid on the couch watching Elmo (have I mentioned how obsessed she is with that little red guy?) saying "No Mama" softly and repeatedly. She did like the smoothy though.

I had stocked a few things that I thought might work before we left but I'm heading to the grocery store in search of...well, anything that might work. So far drinkable yogurt, Pediasure and smoothy fixings are at the top of the list. If any of you have any ideas, I'm soooooo open to suggestions. I'll be doing a serious google search shortly!

"It's OK Mama"

We are home and KayLi is doing amazingly well. Her surgery went great and she has been her wonderful little self since about eight this morning. Before that...well I'll post more tomorrow. She has been playing this afternoon and evening as if nothing at all happened yesterday! Other than a swollen upper lip and a few tiny bruises around her mouth, you would never know she had such a delicate surgery yesterday.

She and Emily started out unpacking her hair bows from her suitcase but somehow they ALL (not just the few I packed) ended up on KayLi and her "Wawa."

This afternoon I tried to look at her palate again and she brushed me aside and said "It's OK Mama." So I guess IT IS! Our God is soooooo GOOD!!!

Red, Red, Red!

Last Friday was "Red Night" at our house. I actually thought of a red food that wasn't disgusting, so we had spaghetti. With red kool aide and you guessed it red jello for dessert.

Then we finger painted with red washable finger paints, which KayLi LOVED!

Allie tried to get away with folding his paper in half and calling it art but we wouldn't let that work. By the way this picture is pay back for all the terrible pictures of me he puts on Facebook.

After red finger painting we hunted for red circles that Emily and Shelby had hidden around the house. I wasn't sure how this activity would turn out but KayLi got so excited each time she found one.

Then Allie showed the kids that if you lick the red circles they will stick to your glasses. KayLi had a slightly harder time getting them to stick to her eyes but she was determined to wear red circles too!

On a different note, KayLi's palate surgery is Wednesday and I would greatly appreciate your prayers. My mom is hanging out with Emily and I know they would appreciate your prayers for them as well. I will be trying to post from the hospital and the hotel room but I'm sure they will be short and simple. I really wish I was going to be posting about "Yellow Night" instead but we are looking froward to getting this behind us. Two weeks of a liquid diet sounds awful though.

Allie is loading up as I type because she has pre-op appointments tomorrow.
Thanks for your prayers!!!

Pigtails!!!!

KayLi's hair is finally barely long enough for pigtails!!!!!
I love this picture sooooooo much!!!!

Is This Wrong?

My sweet friend Sundai (who is an amazing Special Education teacher) has been super supportive of all things educational for KayLi. She has hooked me up with a great pre-school curriculum, which I can't wait to get started on after KayLi recovers from her surgery.

Last week she was at a teachers supply store and picked up these way too cute lacing cards for KayLi. I'm wondering though...

is this the wrong way to use them?

Because if it is, we don't care. It's very fun to dance around wearing them!!!

Thank you Sundai!!! "KayLi Sue Lue Ellen" loves them very much!!!!

KayLi & Daddy Time

I never know what I'm going to come home to when I leave Allie with the kids. After a Wednesday Night Youth Dinner at church, I came home to KayLi very excited about how Daddy did her hair!

It's been interesting trying to get pictures of her lately. She grabs whatever she can, pretends it's a camera and says "Smile!"

I did get one half smile of her with her precious hair do though!

We're So Blue

On Sept 11th we officially resumed Family Nights at our house. Yep, it's been that long since I've posted...sign. Since KayLi is learning her colors in English I thought Blue would be our first theme.

First I decorated the dinning room to make things as blue as possible but I forgot to take a picture of how cute it looked before we destroyed enjoyed it.

I tried to think of blue foods for dinner but all I came up with was a feeble attempt at blue mashed potatoes. Don't try that...there's a reason I didn't take a picture of them. We did have fun with the blue Hawaiian punch and blue Jello for dessert.

Then we made a simple blue whale craft. KayLi was all about gluing on as many blue Fruit Loops as one whale could handle.

I think I had forgotten how much fun we used to have during our Family Nights when Em was little. We actually enjoyed making our silly Blue Whales. Can you guess whose is whose without enlarging the picture?

Celebrating Emily!

We celebrated Emily's 12th birthday in a most unusual way. Normally there would be a big blow out of a slumber party that I would labor over for a good week. This year it just wasn't in me. I'm so thankful that she was cool with that! So we planned a few mini celebrations over the days surrounding her day.

Several days before the big day, we decided to give her "The Big Gift."

She was a little surprised when she opened the first present and it was a piece of paper.

But she was very excited when she read all the little pieces of paper!!!!!

The celebration continued Saturday night when we took her and her two best buds ice skating. Aren't they cute all ready to skate the night away?!?!?!

They hadn't been ice skating in a few years and the girls didn't get past holding onto the railing, when Logan decided to do a fancy spin move. So we ended up rushing to the ER to take care of this....

Poor Logan. We did get some very gory pics for him to proudly display on Facebook though.

You should thank me for not posting them here. Really, "Your Welcome."

Since we didn't have cake on the night of the unfortunate ice skating incident, we had a special dinner and cake on Labor Day. Which was nice because Ryan was able to be here :0)

Emily has heard the story of the year Ryan ended up with his face in his cake many times. After several text messages (from her new phone because texting is just the coolest thing ever) we took the hints and well....

She was a very happy (and prepared...check the hair) birthday girl!!!!

KayLi on the other hand said "No!" about fifty times!!! She has just discovered how great cake is and now this one is ruined. She was easily pacified by the chocolate back up cake though :0) She is sitting on my lap as I type this saying "No Emy messy messy cake."

Since KayLi thought the present was for her, Emily sweetly let her help open it. Ryan and Ana were very thoughtful. They put lots of fun little gifts in the pockets of a new messenger bag for her. She had been opening presents over several days and it was wonderful for her to have something to open on her actual birthday. Thanks Ryan & Ana!!!

It may not have been a huge birthday party but it was a very memorable celebration!

We love you Emily!!!! You can stop growing up any time now!!!!

Doctors, doctors and more doctors

Last week on Monday, Aug. 31st Allie, KayLi and I loaded up and headed to Dallas for five medical appointments. KayLi did so great on the five hour drive. At least until...

The SWI staff mentioned that she got car sick on the drive to meet us but we haven't had any issues...until Dallas. As we pulled off the freeway, we were literally looking at the hotel when she threw up all over herself and the car seat. Just lovely!

It was almost 11:00 p.m. before we got her cleaned up, settled down and asleep. Then we had to clean the car seat and attempt to get some rest before the alarm went off at 6:30 a.m.

Her first appointment was with the dentist. We knew she had a couple cavities but they looked small. Unfortunately he thinks it would be best to cap them. So, she'll have four put on while she has her palate surgery.

Next on the list was the surgeon. We love him!!! We scheduled her palate surgery for the 23rd of September. Depending on how well she is able to swallow, she will be in the hospital for one or two days. He plans to revise her lip and do some reconstruction on her nose about six months later. She will need revisions as she grows but at least she will have a healthy self image. I'm so glad that Dr. Genecov and his team at the International Craniofacial Institute understand how important that is.

After that we had a visit with the speech pathologist. She was very thorough and thought that KayLi was doing very well with her language skills. I was surprised to hear that not all children require speech therapy after having their palates repaired so late. She said it was possible that we would just work on some things at home. I'm trying not to get my hopes up though. We'll do whatever we have to do.

After lunch we had an appointment with the ENT. This was, well awful! He was a very kind doctor and I'm certain he is an excellent ENT. He just wanted to make sure that KayLi had no problems with acid reflux. In order to do that he had to put a scope down her throat by going through her nose. Yeah...I left the room. She does have minor acid reflux issues and is now on medicine to get that under control. The last thing we want is all that yuck "bathing" her surgery site.

Her poor ears have been through a lot. Her left ear has a hole in it from a previous infection that ruptured. Her right ear is still infected. It likely has been since long before we held her. It's the one that was so bad in China. I'm thankful that we were able to at least calm it down before the flights home. It's actually scar tissue on her eardrum that is infected. We have been using some pretty strong ear drops for a week now and I think it's healing. She will have tubes put in both ears during her palate surgery.

We'll have her hearing checked after she recovers from surgery but we are not too concerned. She seems to be hearing well, so hopefully there is little or no long term damage.

Last on the list of appointments were medical photographs. That's where the oh so cute fishy waiting room was. I brought the camera with the idea to take pictures at each appointment but totally forgot about it. I did get a couple of her on the giant whale in the ground floor lobby. Notice the wardrobe change before the fishy waiting room pictures. That would be because she split orange juice all over her new cute dress at lunch. So we drove home with lots of fun laundry!

After the ENT I thought for sure we would never get her to hold still for anyone in scrubs again but she was great! She was great at all the appointments though. The dentist commented that she behaved like a five year old. It's very obvious that she was examined often because all of this is old hat to her. She just acts like it's no big thing at all to hold your mouth open for a stranger for five minutes!

That's about it. We got home late on the 1st where my mom was great and held down the fort for us. We let Emily stay up to see us before she went to bed. We were only gone one night but you would have thought we took her little sister away for a month. I'm praying hard for the week of the 23rd because we will be in Dallas ALL week.

Right now our schedule tentatively looks like this:
Sept. 21st - Head to Dallas
Sept. 22nd - Pre-op tests
Sept. 23rd - Surgery - Repair her palate, put tubes in both ears and cap four teeth.
Sept. 24th Possibly leave the hospital and stay at a hotel.
Sept. 25th Possibly leave the hospital and stay at a hotel.
Sept. 26th Drive home.

I'm so glad to have a game plan and know that KayLi is on the road to living a healthy, full life. I can't wait to have surgery behind us. I can't wait to know how she will sound. I can't wait to stop the flow of fluid to her ears and know they are well. I can't wait to see how she looks after her nose has been reconstructed. And way down the road I can't wait for her to have the language skills to share her thoughts with me.

I guess I'll have to wait though because none of it will happen quickly. Hhmmmm...maybe God has taught me a little bit about waiting for a reason!

All Three!

Well, so much for catching up on the blog over the long weekend. It was a grand idea but my execution was futile :0) So I'm backing up a bit. Maybe eventually...

Yeah.

On Aug. 30th we dedicated KayLi. The whole weekend was a celebration of her and it meant so much to have all three of my children under one roof!

I can't tell you how incredible it was to give back to God what He has so graciously given us. Dedications at our church are very simple but so sweet. After the regular service our pastor called our family to the front of the church. Then he asked everyone (it's a small church) to surround us and lay hands on us as he prayed for KayLi and our family. So, so sweet!

After the service we celebrated on last time by going out for Chinese food. Have I mentioned that KayLi is a rock star at our local Chinese restaurant?

They LOVE her!

Then it was home for a mellow afternoon and I finally got pictures of ALL three of my kids!

My friend Traci gave them these cute t-shirts. The plan was to take the shirts to China but in the last minute craziness Emily's was forgotten in the dryer :0( I'm glad that we were able to take them when all of the kids could be together though.

It's very challenging trying to take pictures these days. KayLi pretends anything and everything is a camera and tries to take pictures of you. She's too cute when she peaks out from behind the remote telling you to "Mile" or "Eeeeesssse!"

If I had a decent camera (that hadn't been dropped on cement recently) maybe these pictures wouldn't be blurry. I've been so disappointed with all my pictures lately. Sadly, it doesn't look like the camera fairy will be visiting anytime soon. So I guess I better go back to my older (slower) one. Thank you all so much for putting up with my terrible pictures. At least my subjects are super cute!

Celebrating KayLi!

Last Saturday (Aug. 29th) we celebrated KayLi's third birthday in a sweet and simple way. Ryan was home for the weekend and my friend Sundai and her two kids Logan & Shelby joined us. I fixed an easy meal of lasagna, french bread and salad for dinner. KayLi absolutely loves Elmo and to say she loves cake is an understatement.

When you combine the two, you get one very happy girl! She beamed and was a little embarrassed when we sang Happy Birthday to her. Too cute!!!

She had no idea what to do with with her gifts at first but when she learned that there was a cute "Wa wa" inside she was so excited! Thanks Ana! The dolls "medical supplies" are going to really help us prepare for her surgery.

She caught on to opening the presents very quickly and loved each one!

Each time Allie would bring out a new gift, she would say "Oh!", push the last one aside quickly and reach for the next one!

She really loved the bouncy ball that Ryan gave her!

It's so fun to look at the pictures from her night with her. She still gets shy and smiles if I sing Happy Birthday to her. It's great to see her feel so special.

I'm super behind on blogging and I hate it. I have serious plans to catch up on the blog, laundry and e-mails the day KayLi starts kindergarten!