Happy new year!

"All you have to decide is what to do with the time that is given to you."

--Gandalf, The Lord of the Rings

Post-op yet again

Well we made it about a year. Emily had surgery this morning to do some scar tissue repair from her previous surgeries. Her orthodontist needed the extra tissue removed before we can start her palate expansion. Surgery was supposed to be in January but I asked to be put on a cancellation list so we could get it in under this years' deductible. I'd say that's a bad reason, but if we have to do it anyway better do it economically! 

Sleeping off the meds...

Emily's prayer

We have prayer at the end of our morning reading and it's always insightful.

Emily: "God, please help mama's cold to go away so she doesn't cough or sneeze or blow her nose...and the snot running down her nose should probably stop..."

It continued for a few more minutes and I wish I'd had an audio recording (as I usually wish with Emily's prayers!) but after that phrase I had such a hard time not laughing that I stopped listening closely. Laughing would have caused me to cough and need to blow my nose...and apparently have snot running down my nose.

What exactly does "hip" taste like?

Quite frequently, finding humor is the only thing that keeps me from breaking down during the day. Sometimes our multitude of special needs and appointments (current and future) get a little overwhelming.

Today, Emily had an appointment with her plastic surgeon. This was just a basic follow up but I wanted to ask him some detailed questions as her orthodontist is wanting to start her palate expansion in the next few months. This will make the hole in her palate bigger and I wanted to make sure I understand how all of this will work before we start the expansion.

While we were discussing the expansion, Emily's future bone graft came up. This will be a bone graft to fill in the missing bone in her jaw where her cleft is (left front of her mouth). This is something they will plan on doing around age 10, so in the next year or so. 

And it's a surgery...which is still a huge trauma trigger word for Emily so as soon as she heard that we couldn't discuss anything else. In the process of explaining it to her she asked where the bone would come from and we told her her hip. 

To which she replied: "Ewww, my mouth will taste like my hip!"

An day unexpected

Today Alex was being tested for growth hormone. We were told it would be a 1.5 hour test, but when we got here we found out it would actually be 5.5 hours! 

I am so grateful to Mark (and his coworkers) for him being able to have the morning off because three of the girls also had speech and occupational therapy this morning.

Oh, and the plumber came for the finish plumbing as we were leaving--while Mark  was at a dentist appointment. Does it seem like we're in a few too many places at one time? Kind of felt that way, too. 

So there was a little rearranging sine I wasn't planning on being at the hospital past lunch. Mark made lunch and brought it up and then went back to work. The other kids have been in the lobby while Alex did this:

The test made him really tired and he slept through most of it. It's almost 2 now and he's eating lunch. The test had the potential to make him sick to his stomach  and I am so grateful it didn't. Yay for being headed home!

Halloween

Despite it being a bit chilly, we did go trick-or-treating this year. Danielle's latest obsession is Elsa from Frozen so she (like many other little girls this year) wanted to be Elsa for Halloween. I made the somewhat (in hindsight) not very bright suggestion that the kids could all go as Frozen characters which meant lots of costume improvisation for me! 

So above are Kristoff, Sven, Hans, Elsa, Olaf, and Anna!

At this moment...

We are done with our schoolwork (minus some history reading I'll do at lunch). I'm making lunch in a castle with a queen...

who is protected by soldiers and a friendly poisonous dragon (being trained by one of the guards).

In the background are a robber in jail and two soldiers preparing their weapons. 

I had nothing to do with this play scenario but I must say that homeschooling certainly seems to be good for developing their imagination!

Traveling

We've spent the last two weekends out of town. It's been a nice change but a little stressful with school starting this week. Two weekends ago was a stay at Mark Twain Lake with some family friends. The kids loved driving the boat, tubing, and being thrown off of the boat by Mark!

And just hanging out together...

Six Flags

This is the third year we have gone to Six Flags with the kids. Once again we managed not to lose anyone and no one threw up so I consider it a successful day. ;)

The kids are finally big enough to ride almost everything. I remembered to take ibuprofen this year to prevent some of the aches and pains of so many roller coasters!

I don't have a lot if pictures but here are a couple.

Getting ready to ride Superman

Done with Superman!

Chick-fil-a dress like a cow day

Oh, yes, I am crazy enough to take six children out to eat AND dress us all up like cows. (And no, I am not the giant cow!)

Operation "liberate Mama" has commenced

That title should really read something like "operation make-children-independent has commenced", but it's kind of one and the same. 

One of my goals for this summer (there are always too many!) is to teach the kids to do their own laundry. It's a little more complicated than it ought to be with our current laundry set up. We have a frontloading washer on a pedestal drawer. The whole thing sits on a concrete pad about 6" above the level of the basement floor.

What that really means is that I have to stand on tiptoe to see when I add soap to the dispenser. None of the kids can even get close. So I've been stocking up on laundry soap pods that get tossed directly into the washer drum.

I started with the boys and this is the third week they have done their laundry themselves. I go down with them in case they have questions (or forget to add detergent!) but they do it all by themselves. Since they don't really have a full load each week they are stripping their sheets and washing those, too. I'm all about killing two birds with one stone!

They think they're super independent (and all the girls are begging to do their own laundry, too!) but since they're only doing one load a week it's not burning them out.

Even better...it's two less loads for me!!

Fourth (fifth) of July

We didn't make it to fireworks on Friday night. The ones we usually watch weren't starting until 10pm and there was NO WAY I was keeping the kids up that late.

An awesome friend mentioned that her family would be going to a fireworks show at a local park only a few blocks from our house but on Saturday. 

How we could not have known about this amazing fireworks show so close to us? It was awesome and worked so well. The only downside was that because it's a neighborhood display we were really close to the fireworks.

As in a hundred feet from the firing zone! I got a few pictures of the fireworks but none of the great face painting Sara did on the kids.

Happy Independence Day!

Recent activities

Our summer (like every summer) just seems to fill up.

There's helping in the kitchen...

Getting Cardinals tickets...

Going to the park...

Lots of reading...

Snuggling the pets...

Going to parades...

And playing with Mama's camera!

I think she answered it herself!

On Thursday we were getting ready to head to Children's for a couple of hours of speech therapy when I got the following question from a frustrated child:

"Why do we need go a lot of speeches?"

Mama is alone!

The kids are in a day camp for the next few days.

I can't decide whether I'm excited or really nervous. (The coffee isn't helping!)

I've got lots of things planned (painting, anyone?) but we'll see how much I actually get done. I spent the first few hours of their camp out in the lobby of their camp center.

Hover much?

This is new for them and me, but I think they will have a good time and really enjoy it. It's just hard to leave when they have fears of being abandoned.

And those fears are legitimate.

Off to run some errands!

Hooray for a second toilet!

On Father's Day, of all days, Mark installed the necessary flooring and then re-installed the toilet. I guess it shows what an awesome dad he is that he would give up a day of rest and relaxation for the comfort of his family!

The plumbers are coming on Thursday to do the rough-in for the new shower so we're getting closer to having one more room done!

Looking better!

Mark started working on the bathroom bright and early this morning--after his Saturday morning waffle-making ritual. 

He had to build out the wall where the new plumbing will go for the shower and build an additional wall for the other end of the tub. But none of that could happen until he put the subfloor in, which involved raking the rubble smooth and removing some old pipes. He got it all done in record time while I took some of the kids grocery shopping (and I now remember why I enjoy doing that after they're in bed!).

Tomorrow after church Mark's going to put in some hardwood flooring and hopefully the toilet. I am rather excited to have a second bathroom--or at least a second toilet--again!

(The tub is underneath the cardboard for protection. ;) )

Two whole weeks

Today is Thursday, which means we are at Children's for speech for two hours. But today is our last day of speech before we have two whole weeks off, and I am positively giddy with the thought!

We spend at least four hours a week at the hospital for weekly appointments and occasionally more for various additional appointments. Right now we will not be coming to Children's for anything for two whole weeks.

Sigh. Absolute bliss.

Instead, the kids will be participating in a nature day camp four days next week and a soccer camp the following week. And I get to give a huge thank you to God for putting us in St. Louis where there are so many free activities! 

Not that the kids mind speech...they get to watch TV!

Down a bathroom

You've got to love renovations that leave you with a rubble bathroom floor!

This is the downstairs bathroom (which isn't much of a bathroom right now). There is a "concrete" pad made up of apparently whatever was handy underneath the old original tile. The old tile was beautiful (but unsalvageable).

Sportstacking

Last fall we enrolled the kids in a sport stacking class at our rec center. They were already going to be attending a homeschool gymnastics class so I thought we could try cup stacking as well.

I must confess, I did not have high hopes for successful stacking or enjoyment given some of the coordination and motor planning issues we have.

I have been more than pleasantly surprised!

The kids have loved it and have done really well. They helped set up for a tournament earlier this year so we could go and watch. Then this past weekend, they participated in their first tournament. Everyone won medals except for Tim and   Danielle and they both got multiple ribbons. All in all a really good time and great experience for the kids!

Test post

We finally took the plunge and got smartphones! I can't promise it will help me post more, but it's certainly faster than my five-year-old computer! Here's a picture from our sport (cup) stacking tournament this past weekend:

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!).

Whew

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. ;)

WE ARE DONE!!!!!

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. :) :)

Surgery next Tuesday

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

Sigh.

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.

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.

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.