Tuesday, December 31, 2013

A new year

You know you're going to start the new year off well when you leave your glasses at the home of family members who live a few hours away and have to cram a vision appointment in in the last two days of the year because you cancelled the vision insurance for next year... :)

Monday, December 30, 2013

Surgery update

Hopefully I'll get a chance to post about Christmas but I want to get some pictures loaded onto my computer first. Instead I thought I'd update on Emily.

This surgery has been much more frustrating for me than the first. Right after her first surgery (as soon as she stopped throwing up) her speech sounded great. She could say all of her sounds and was very clear. She sounds terrible this time! I keep trying to convince myself that it's because the surgeon used a different flap and it's sitting across her mouth differently, but her speech is just awful. She sounds like she did before the first surgery when she didn't have her retainer in. We have her follow-up appointment on Friday and we'll see what the surgeon says. I'm hoping for really great news but totally expecting the worst.

In the meantime she's on an entirely liquid diet so she's had smoothies, soups that I can puree, and things like mashed potatoes that I can add milk to and blend to a drinkable consistency. She's ready to chew again. I get comments quite frequently like "It's a lot more fun to chew than drink, Mama." ;) We've saved her some cake, Christmas cookies, and candy in the freezer for when she can eat again.

Friday, December 20, 2013

We are home!!

Emily woke up quickly in recovery and then fell asleep again and proceeded to sleep for a few hours. I was hopeful that that meant no vomiting but it was not to be. She started throwing up at 7:45pm and it's still going. But it's a lot less than last time and I think she'll be okay if she sleeps tonight. If she's still throwing up tomorrow we need to take her back in, but I think because the work on her mouth was different this time and there wasn't nearly as much bleeding she should be better in the morning. Last time she swallowed a lot of blood and continued draining blood from her mouth for about 24 hours. She's not draining much at all this time. Thank you, thank you, thank you for all of the prayers!

No tongue flap!!

Emily's out of surgery and her surgeon just came by. Everything went really well and by the time they were ready to close the final hole, the surgeon decided it really wasn't big enough to warrant a tongue flap. :) :) Instead he used a buccal flap. (Yeah, I didn't know what it was either. I just Googled it.) Essentially he took another flap from her cheek, but from within the cheek (part of the fat pad). So she now has two cheek flaps (one on each side) that are attached to her cheeks and sewn to her palate. The great news is that the flaps do not impair her speech!

She will be on a completely liquid diet until her follow-up appointment which will be the week after Christmas, but yay for no tongue flap! Waiting for a call from recovery and then we'll see where we go from there.

Update from surgery

Just got a call from the OR. They are still working on things. The surgeon has added another piece of Alloderm (a tissue grafting/growth matrix; they used this during her first surgery as well) and is thinking we may not have to do a tongue flap! He is supposed to decide in the next 30 minutes or so. Emily will have another flap, but he may choose to use a different one (another cheek flap? not sure on my end) instead of the tongue flap. That would be great news for Emily!

Back in surgery

Emily just went back to surgery; a bit late but they are very booked today. Everything seems to be according to plan except for one "surprise".

The surgeon was in agreement with me that the part of her cheek flap that is left looks really good. Unfortunately we had some additional necrosis (tissue dying) along the side of the flap over the past week so there is a bit more to cover than he had originally planned but that's not a big deal. We're looking at a tongue flap as well as additional stitches along the side where some of the tissue is gone; about a three-hour surgery.

The anesthesiologist mentioned one thing that caused me to catch my breath. Apparently when they are working on the tongue it tends to cause a lot of swelling which can compromise the airway. If she has significant swelling and they feel that she would not be able to breathe safely on her own, Emily will be kept sedated and admitted directly to the ICU.  

That I was not prepared for.

The huge benefit to that (I think) would be that her body would wear off of the OR anesthesia and we might have less vomiting. I don't know--I'm looking for a silver lining. :)

Wednesday, December 18, 2013

All I want for Christmas is a kitchen sink...

...and it ain't gonna happen. At least not a permanent one.

We're in the process of remodeling. (For those of you who know us, I'm sure you're rolling your eyes and wondering when we have ever not been in the process of remodeling!) We needed to replace the floors in our house due to water damage. Before we bought it as a foreclosure, the house was vacant and someone had come in and ripped out the copper pipes, leading to a lot of water damage all over the old wooden floors. The damage was so bad that even companies who specialize in refinishing old floors had told us there was nothing we could do; we needed new floors. Several months went by in which we debated carpet versus hardwood and the implications of both. Carpet would be easier to lay around the radiators but was an issue with the pocket doors. Hardwood was our preference and would be easier with the doors, but would require removal and reinstallation of the hot water radiators.

We finally decided to go with our preference and put in new hardwood floors. The upstairs flooring is done and the radiators reinstalled (yay for heat!) and we've been working towards the downstairs. The problem became the kitchen.

Our kitchen layout was atrocious. Whoever had the house previously had put a 4'x5' peninsula against one wall. They installed one set of cabinets underneath and the rest was just open space. In addition, the counter was tiled with rough tile so although it was great for setting hot pots on, it was useless for a lot of kitchen prep. Our plan to replace the flooring extended into the kitchen, so we either had to floor around the current cabinets (which wouldn't have worked as it turned out) and live with the layout for a long time, or replace the cabinets now with a more functional layout but have the added cost of new cabinets.

Yep, new cabinets.

We ordered new cabinets and Mark began the process of taking out the flooring in the kitchen. This involved taking out the tile, backerboard, linoleum, OSB, and original hardwood flooring--all of which was UNDER the old cabinets. So in order to remove all of this, everything in the kitchen had to come out...including the stove, dishwasher, and sink. We switched the layout of the kitchen to move the stove to the other side, so we had a company come out to move the gas line and were able to reconnect the stove the same day on the opposite side of the kitchen. Now Mark's taken out the other side, meaning we've lost the sink and dishwasher.

Unfortunately, the plumbers can't attach the sink or dishwasher until the new countertops are in and we're waiting for the countertop people to come measure for the template. While waiting, Mark is going to cut a piece off of the old countertop and set it on the new sink base so we can temporarily attach the sink to the new plumbing. In the meantime we're washing dishes in the bathtub.

At least we have indoor plumbing and hot water!

Tuesday, December 17, 2013

Change of plans

I got a call yesterday from surgery stating we needed to be there today at 11am. There were some details to iron out on my end so I got busy arranging everything for today. Then about 2:30pm I received a call from our surgeon's admin. An emergency case had come up and they needed to move Emily's surgery to Friday. Not a big deal--it really doesn't change a lot for us--but it has thrown me for a loop! I had planned out the entire week based on surgery on Tuesday. I cancelled speech this afternoon, planned a light week of school, set up someone to come stay with the kids until Mark could get home from work, and planned all of the meals around who would be home when...

 Now I feel completely disorganized.

The current plan is that Emily will be in the OR at 12:30pm on Friday. In the meantime we're doing a normal school week and I'm trying to readjust my mental schedule with the current actual schedule. Emily's doing well. Some of the tissue is definitely dying off and she is complaining of tissue hanging down in her mouth. Unfortunately there's nothing we can do about it; the surgeon will clean it up on Friday.

Friday, December 13, 2013

Surgery next Tuesday

Emily's follow up appointment with the surgeon was this morning. About 20% of the tissue from the cheek flap is dying (it's turning a lovely black color and does not smell good...avoid getting close to Emily's face for the next few days ;)). The discussion was whether we should go ahead and do another surgery to remove the dead tissue and possibly do a tongue flap or just wait and see what happens with the dying tissue. The problem is as the tissue continues to die it will start sloughing off into her mouth, and she will have not only a lot of mouth odor but flaps of dead skin hanging down from the roof of her mouth. I'm thinking that won't be so pleasant for Emily...or the rest of us.

So the surgeon is going to go in and remove the dead/dying tissue. If the tissue underneath is sufficiently healthy and appears to be covering the opening in her palate, he will stop after removing the tissue. If, after removing the tissue, he determines that she still has an opening in her palate, he will cut a small flap from her tongue and sew her tongue to the roof of her mouth. The flap will remain attached to her tongue (like the cheek flap is currently) to give the tissue a good blood supply until it grows into the other tissue on her palate. Her tongue will be sewn to the roof of her mouth for three weeks.

Thankfully this will be a shorter surgery (1.5 to 2 hours) than the first one (almost 5!) and I'm hoping she will have an easier time after the anesthesia. Vomiting continually for 24 hours with your tongue sewed to the roof of your mouth sounds amazingly miserable.

Thursday, December 12, 2013

A Christmas party and growing up

Today was a pretty relaxing day. We had a couple of hours of speech this afternoon (Julia and Danielle; Emily is out of speech until 2014 to let her mouth heal) and then a Christmas party this evening. It was great to see some old friends that we only see once or twice a year and the kids had a blast eating everything in sight (it's a buffet) and doing crafts--mostly Christmas ornaments. Mark and I no longer get to hang ornaments on our Christmas tree; there's no room for any of ours with all of the kids' ornaments! Someday when they move out and take all of their ornaments I'll pull out all of ours again. Which reminds me...

The kids talk about what they want to do when they grow up all of the time. So far Tim is going to live in London for three years, then buy a boat and let me live on it, and I'll never have to cook or clean. Sign me up! Julia is going to live with me and cook for me. (I really don't think I complain about cooking, but they seem to think I need a break!) Danielle is going to live with me and clean (by the way, these are all their own ideas). Alex is going to live in Arizona, Australia, several parts of Africa, and across the street from me. Tim's latest idea after watching The Hunchback of Notre Dame and talking about the church made me laugh: "Mama, when I grow up I'm going to go to Paris and take pictures of the outside of the church, and then the inside of the church, and that big window, and then I'll send them to you."

Wouldn't it be easier if I just went with him?

Wednesday, December 11, 2013


We made it home about lunchtime today. The rest of the kids were at gymnastics with Mark so Emily and I had the house to ourselves to get unpacked. She is feeling great all things considered. The left side of her face is swollen and a bit tender, but she hates the Tylenol with codeine. I didn't give her a choice on taking it at bedtime. She doesn't settle down and go to sleep when she's in pain. I'll let her live with it during the day as long as she is eating, but she's got to sleep at night. Hopefully she'll only need it for a couple of days.

Everyone was glad to have mama home (and mama was VERY glad to be home as well). One of my favorite things about coming home was seeing all of the work Mark did in the kitchen over the last two days. All of the new cabinets on the west wall are in! No countertops yet (not until all of the base cabinets are set) but it opened up our kitchen so much to take that huge, non-functional peninsula/island out and have real cabinets.

The kids have been enjoying their week off of school. Since we've only taken one day off of school since starting in August (no, we did not take Thanksgiving off--we worked Thursday AND Friday!) I think we've all earned a break, and I knew it would be hard for them to concentrate with the difference in schedules. So Monday they did the homeschool day at the Missouri History Museum, Tuesday was speech and gymnastics for the boys, and today was sport stacking for all and gymnastics for the girls. Tomorrow is speech and a Christmas party, so we'll end the week with a fun evening and relax on Friday!

Going home!

The IV is out and we are just wanting on our prescriptions to be filled. The pharmacy doesn't open until 9am so it will probably be somewhere close to noon when we break out. Emily is doing great but ready to be up and moving.

And more great news--her surgeon was here this morning and said the flap is looking much better! We might not have to do this again after all!! We still have follow-up on Friday and then he'll make a decision as to what needs to be done. Please continue to pray that her flap tissue would have the blood flow it needs to heal so she doesn't have to go through surgery again! :)

Tuesday, December 10, 2013

One more night

Emily had a really good day after about 7am. She has been up and walking around and NO MORE PUKING. She only ate a few bites throughout the day but ate quite a bit more at dinner and is drinking much better since they turned her IV down. Our attending physician came in to see her about 6pm and said "everything looks good, see you tomorrow morning" so I took that to mean that we were staying.

The one thing she is not happy with right now is the taste of Tylenol with codeine. She hates it but they're not giving her any meds through her IV now so she's stuck with it. Hoping for an early release in the morning. I'm ready to get home and see the kitchen cabinets Mark has been busy putting in while I've been relaxing in the hospital!

I did point out to her that she can say her S's now--without wearing her retainer! She was super surprised about that. She is so used to wearing it all the time that she hadn't thought about the fact that it wasn't in--and people could still understand her. Her jaw literally dropped when I told her. Too cute.


All of the doctors have come and visited this morning. Emily was resting for the first group but when the surgeon came he woke her up to have a look in her mouth. She's feeling much better today.

The good news: Emily has had about 5 mL of Sprite and a bite of applesauce and hasn't thrown up. Hooray!

The not-so-good news: According to our surgeon, the cheek flap is not looking healthy, meaning it is not getting a good supply of blood. If that is correct, the tissue will gradually die off. It won't affect everything they repaired yesterday, but they want to try to save as much tissue as possible so we will have a follow-up appointment with the surgeon on Friday. If the tissue from the cheek flap is dying, Emily will have surgery again next week to attach a tongue flap to her palate. This will be in place for three weeks and will effectively tie her tongue, preventing any kind of clear speech. If you know Emily, you could not imagine a worse punishment for her than not being able to talk for three weeks. ;)


Still vomiting. :( They're trying a different anti-nausea medicine to see if that will help. She asked me earlier tonight if she could go home. When I asked her why, she said "because I don't feel good here." Apparently if she goes home she'll feel good.

I don't think that's going to work. :)

On a positive note, she just took a sip of Sprite--pretty much the tiniest sip imaginable--and it hasn't come back up yet, so that's a good sign!

Monday, December 09, 2013


I was all set to post that the vomiting had stopped and then she threw up again. Hopefully after a good night's sleep all of the anesthesia will have worn off. The bigger problem has been all of the blood she is swallowing from the areas of her mouth that were worked on. While they will continue to ooze for a while, I think the majority of the bleeding is done and that will help her stomach tremendously. Please pray for a restful night for both of us.

We have some awesome nurses here! Many thanks to John (day), Lauren, and Sean (both night) as well as all of the great surgery people!!


Still throwing up. Please pray. She's not in any danger, just miserable. :(


We've made it to a room on 10W and Emily is sleeping. She threw up a lot so I'm hoping she will be able to sleep off the nausea and wake up feeling better. It's pretty painful to watch as she is throwing up a lot of blood (swallowed during the surgery as well as running out of the incisions when she vomits...hope no one's reading this during dinner.). After her strabismus surgery she felt much better after sleeping so my bet is she will wake up and be ready to eat. In recovery, the first thing out of her mouth was "can I eat?". Poor thing thinks we're starving her. :)

Right now we have a room to ourselves which is super nice since Emily can rest undisturbed.

Surgery update

Since you haven't heard from me in months, I'm now going to inundate you with lots of posts in one day. :)

Emily is done with surgery (as of 12:45pm) and is in recovery. I am waiting to be called back. Her primary surgeon (there were two working on her mouth) is optimistic that as long as the flap is able to maintain blood flow this will be the only surgery on her palate (she'll have additional facial surgeries as necessary as she grows). The surgeon was concerned that the flap looked a little pale, indicating decreased blood flow, so please pray that her palate tissue would get the blood it needs to survive and heal!

At the hospital

It's finally here. The day Emily has been asking for for almost a year now.

She's having her "hole surgery".

This would also be known as a palatal fistula repair. :)

Em's back in surgery right now. It's supposed to be a 3-4 hour surgery. Mark's home with the kids (they're going to the Missouri History Museum homeschool day!) and I'm hanging out. A dear friend is on her way with coffee from Starbucks. This same sweet friend has been through a few surgeries with her girls and was able to offer some great advice as Emily and I will be spending the night here. Originally we had talked about having this surgery done in Boston but I am so glad we are home.

Please be praying for Emily. She does NOT like waking up from anesthesia (she threw up a lot after her strabismus surgery) and she is really dreading that part.

Saturday, December 07, 2013


Friday was a momentous day for us:

Danielle got ALL of her spelling words right on her spelling test! This is a first for her and she (and I) was so excited! Since Danielle has some pretty challenging memory issues, spelling is just a bear for her. After lots of discussion with Mark and how this would be handled in a "normal" school, I shortened her spelling lists from 21 words to ten. I try to choose words from her original (third grade) spelling list, but words that are important to know, that form base words for other, larger words, and that she has a reasonable chance of spelling. She does well with words that she can sound out but words that break a lot of phonics rules are really hard for her ("enough") or words with more than a couple of syllables ("grandparent") because she gets lost as she is sounding it out and writing down the letters. Hard to explain unless you've seen her do it. :)

And Tim lost a tooth at lunch! This was a surprise to all of us because he didn't even know his tooth was loose. It turns out it was a baby tooth, but I thought he had already lost that one. I think it came out really late because it was next to the front tooth that he had extracted last year and I think the permanent tooth wasn't able to get down to push that baby tooth out until now. 

We went and cut down a Christmas tree today. It's a family tradition but it was so cold today that it was the fastest we have ever chosen a tree. We had a couple of requests of "C-c-c-an we p-p-p-lay at the p-p-p-lay-g-g-g-round?" but by the time we got back to the playground everyone wanted to go inside and get warm! So we loaded up in the van (with the tree...inside...makes the van smell nice! ;)), grabbed dinner at McDonald's and drive through the Way of Lights at the Shrine of Our Lady of the Snows. That's also a tradition and the kids always ask me to read the Bible story on the boards as we drive through.

Tomorrow is our last concert of the year (band for Mark; my orchestra concert was Thursday) and then Monday is Emily's surgery--finally!