Tuesday, April 15, 2014

Every day

We've just made it through a round of a head cold which hit almost all of us. The nice thing was it caused me to cancel speech for all of last week. I loved having the extra time at home and it was nice to have a week to work on the different techniques I learned at the Empowered to Connect conference last weekend. ("Would you like to try that again with respect?")

In other news, we're adding another speech time. Alex has speech apraxia and we had him in speech therapy a few years ago...until our insurance stopped covering it. We have different insurance now and they cover speech for non-restorative conditions so we're trying again. Children's has been great about trying to work with our current schedule, so we'll be here on Tuesdays at 2pm, 2:30pm, and 3pm for three different kids (with three different therapists!). We'll still be here for a couple of hours on Thursday as well but at least we didn't add another day! 

We're gearing up for Easter and it's been a perfect fit with our curriculum as we talked about Jonah yesterday. It was fun to show the parallels between the two stories and talk about why Jesus died on the cross. The kids are getting old enough now to have a better understanding of what Jesus' death and resurrection means and why it is so important.

Of course, that doesn't mean that they're not most excited about the Easter egg hunt on Saturday (even over our church service in Tower Grove Park!).

Monday, March 17, 2014


Getting back into the swing of "normal" life is wearing me out, but that's a good thing. I just don't have as much adrenaline as I did for a few months there.

Since tomorrow marks three weeks post-op for Emily, I should probably explain what is actually going on (since I did nothing of the sort in the last post--I was over-the-moon ecstatic and pretty much incapable of forming coherent sentences).

All of Emily's six surgeries failed. At the final surgery only about one-third of her flap had grown into her palate. She is left with a hole that is actually larger than it was going in because of some of the work that was done. At the moment, she has nothing in her mouth but a few sutures. Her tongue flap was removed from the roof of her mouth and re-inserted into her tongue (yes, it's just as weird as it sounds). Apparently that tissue would not grow back if it was not re-inserted (i.e., if they just cut out the tongue flap and threw it out) and then when the time came to try again we would have to try some really wacky and scary things to try to close her hole. Thankfully(!!), the tongue flap re-insertion appears to be healing well and the sutures are almost all dissolved. Em has a bump on her tongue where that tissue is and the bump may remain until they try again.

At the beginning of April, Emily will be fitted for a new obdurator (retainer) that will block her open palate and improve her speech and eating. In a few years, we will try again.

Things we learned:
  • Emily does great with total intravenous anesthesia (TIVA). Any use of gas makes her really sick, but by the second-to-last surgery we finally hit on a way to keep her from feeling nauseated or puking. :)
  • We will definitely do the hyperbaric oxygen therapy again. That did seem to help her healing as she had the most healing after the second-to-last surgery and the use of the oxygen.
  • We will definitely wire her jaw shut again. She has the strongest mouth and tongue of any person I've ever seen. I think she might be able to pull a monster truck with it (all while holding a conversation with anyone in earshot). She missed out on talking the first three years of her life and she's not about to stop for a few measly surgeries. 
I'm really, really glad to be done with the last few months. If I stop and think about it I'm really upset that none of this worked. Emily went through a lot only to be back where we started--possibly even further back than when we started. I don't understand how this could be part of God's plan for her.

But the reality is that it is God's plan for her, and for us, whether or not we understand it.

And at least next time the other kids will be old enough to stay home by themselves. ;)

Tuesday, February 25, 2014


Great news from the surgeon for Emily...her mouth was not healing well enough so he took everything OUT!

No, it's not good news for her cleft palate, and yes, it basically means she just did six surgeries for nothing.

I don't care.

She is done and she can eat again and she is going to be thrilled. :) :)

Friday, February 21, 2014

Surgery next Tuesday

...and no, it's not the last one.


At our follow-up appointment on Wednesday, the surgeon said he thinks some of the tissue on the left side of her flap shows signs of dehiscence. That's just a fancy term for the tissue coming apart. Again.

Emily's going into surgery first thing on Tuesday and the surgeon will release her tongue (not the flap) and suture anything that is coming apart. (Hopefully it's not much!) He's also going to reattach her arch bars and anchor them to the bone in her jaw. That means her jaw will be wired shut for another week or two. That timeline depends in a large part on what the surgeon sees on Tuesday. He doesn't have a clear look at the flap at the follow-up appointments because her tongue is also attached to the roof of the mouth so Tuesday will let him see exactly how everything is healing.

She's tolerating the oxygen therapy really well so we'll keep that going as long as we can. We were only granted 12 visits by the insurance, but if most of her flap looks good on Tuesday we may push for some additional visits to try to assist the healing.

And how are we doing? Emily is not thrilled about this, but she is on board at least for the moment. I'm trying to figure out what it is that bothers her about the surgeries so we can have her a little more comfortable going into this next one. I am pushing through. I had a hard time explaining it all to her at the appointment without crying. If you've seen Soul Surfer, there's a scene right after Bethany Hamilton sees her stump for the first time. The interaction between her parents right after that would be a great example of how I'm doing. (And if you haven't seen it, watch it. It's a great movie! I watched it during our last in-patient stay. ;))

I'm trying not to be frustrated and wallowing in self-pity. Emily's issues are not terminal, and if all of these surgeries fail she will just go back to wearing an obdurator (retainer). But I'm a bit mad that she might be going through all of this for naught. I know this is just one season of life and at some point we will look back on this and maybe see how it all fits with everything else in her life. Right now it's just hard.

Wednesday, February 19, 2014

Waiting is our new normal

We missed our Monday oxygen treatment because apparently God decided we didn't need to go. ;)

Yesterday was our first day back and Emily did great. I have to take Emily back and get her changed when we first get there so I have to leave the other kids in the lobby. So far I haven't been able to find someone to come sit with them and yesterday when I came back to the lobby they were practically in some guy's lap trying to see his cell phone. I was horrified and ended up not going back to check on Emily until 4pm because I didn't think I could safely leave the others. Tuesdays and Thursdays are big clinic days for the wound care clinic so the lobby is super crowded. But Emily does fine back by herself and it's probably better not to have me back there so she doesn't try to talk.

Today is another follow-up with the surgeon. I'm really hoping we get some kind of timeline as to when he will release her flap.

Friday, February 14, 2014

Happy Valentine's Day!

It started snowing right at the end of our Bible reading this morning so I gave the kids a break and sent them out to play in the snow. We've had quite a bit of snow this winter but it's been so cold the kids haven't been able to play in it much. Today was a prime opportunity with huge snowflakes and decent weather.

We were planning on going to our local homeschool co-op Valentine's party but we had to forgo that because of Emily's oxygen treatment. Of course I avoided wording it that way to the kids but they had really been looking forward to the party. They've been talking about it since last year.

So instead we did school and then we made chocolate-covered strawberries. I'm always a little leery of doing "projects" with all of the kids but this went really well!

We made 32 strawberries and the kids enjoyed them after dinner. Somehow I've inadvertently created a tradition of making individual heart-shaped pizzas for Valentine's day. I'm not sure how it got started but the kids insist we do it every year so we do. :)

Emily's oxygen treatment went well again today. She enjoys the attention and today they let the other kids come back one at a time and visit her because I was getting lots of interesting questions about it (like "Is Emily going to look different after she's done?", which makes sense since she keeps coming out of surgery with additional work done on her mouth). The kids thought it was pretty cool, but they were more interested in watching the Disney movie out in the lobby. We get a couple of days off and then a full week of treatments next week. 

Thursday, February 13, 2014

Still breathing

I had the day planned out pretty well, I think. I had a dentist appointment at 7am. Then we'd do school from 8-9:30 and head to speech, taking any work that wasn't done. Then home to eat lunch and make dinner before heading to the oxygen treatment at 2:30. Then swing by home at 5pm to pick up dinner and get the kids changed for gymnastics.

Yeah, and then the wound care center called and asked if we'd mind coming in at 1:30pm to do some paperwork?

So we barely got lunch in after speech before heading back up to the hospital campus for the afternoon. I got a little bit of dinner prep done but not as much as I needed.

Emily's first oxygen treatment went well. She had to put on adult-size scrubs since they don't usually treat pediatric patients (the previous youngest patient was 17). We both giggled over her "clown clothes" and then she climbed up on the bed. She was a little nervous going into the chamber but did great once she was in there! She got to watch TV for two hours so that kept her pretty occupied.

I bounced back and forth between the treatment room and the lobby, giving three practice spelling tests and grading math work. We did finally get everyone's work done. :)

The other kids haven't seen Emily's "sliding bed" (as she calls it) so they kept asking me if she was going to look different when she was done today. I think they were a little worried about what we were doing to her back there. But no harm done; she came out talking up a storm ("stop talking, Emily...stop talking, Emily") and is ready to go back tomorrow. It will be good to have two days of this and then a break before we go every day next week...and the next.