Still Plugging Along

March 23rd, 2011

We’re still here, but busy.  You can see that Ami is free of arm restraints … well, except when they wear them on their legs.  Fancy shin guards for future hockey players?  There’s never a dull moment…

Actually we are still putting them on her arms at night because she still has stitches in her mouth.  She’s gotten so used to the no-no’s now that it doesn’t even matter, but her hands do go in her mouth if we’re not watching.  Next week marks 6 weeks post surgery and Ami’s “all clear” to return to normal eating, etc.  Already this week she has been enjoying all the textures again of soft, well-cooked, but no longer puréed foods.  This was her palate last week.  ↓

And yesterday.  ↓  We’re getting there…

Mr. Bunny is back.  We’ve enjoyed watching him munching on the lawn a few mornings and evenings.  He obviously evaded the coyotes and owls over the winter.

I just finished the quilting for another one of Virginia’s beautiful quilts.  She’s 89 years old, and her sewing machine hasn’t slowed down yet!

Now that we’re having intermittent good weather along with the rainy weather, we’re starting to work/play outdoors more.  Mud (gravel) pie anyone?  As of today, the raised garden beds are weeded, fertilized, and ready to plant.  (Only peas and spinach at this point, as it’s still below freezing at night.)

We’re also finishing indoor projects (because who wants to be indoors when the weather turns nice!)  So, taxes are done, re-adoption papers are filed (Court date next week!), I’m on my next to last assignment for my online Continuing Ed. class (keeping up my teaching certification), and nearly all of Ami’s 100 Good Wishes Quilt squares are cut out and waiting to be assembled (still waiting on a few more that are supposedly coming from extended family members).  The past couple weeks have been productive (which feels really nice since I took about a month hiatus of everything to focus on my girls while Ami recovered)!

Ami’s Progress

March 12th, 2011

It’s been 3 1/2 weeks since Ami’s palate surgery and I think we’ve weathered the experience pretty well.  In a few days, Ami will be able to discard the “no-no’s” (arm restraints).  She has adapted very well to using them, but we’re hoping that sleeping through the night (not that that has really ever happened) will resume once they come off.  [Imagine having straight boards for arms, and waking up whenever you try to roll over - especially since Ami used to be a stomach sleeper.]

On Monday the girls endured yet another drive over the mountains to Ami’s Post Op appointment.  Our day was spent 6 hours in the car, 1 hour waiting in the hospital room, and 10 minutes talking with the doctor.

But the doctor was pleased with Ami’s recovery.  Everything looks good so far, and we will see him again in 3 months.  There is still the possibility of a fistula developing, though it is not likely.  That is why she is still on puréed foods for a few more days, and soft foods for two more weeks after that.  So we will continue with Mommy feeding her, and watching to make sure no objects go in the mouth that might damage the still delicate new palate.  The doctor is also looking at the soft palate in the back of Ami’s mouth to see how that is healing.  I’m not sure how it’s supposed to look (and move), but that (and her adjustment to it) will also affect her speech, and play a big part in determining if she will need any type of soft palate revisions in the next few years.  Already we are hearing new sounds that she was unable to make before.  It is exciting to hear better articulation, though we have a long long way to go.  She will be starting speech therapy again soon.  We also immediately noticed more nasality in her voice.  It seems to have gotten better, now that she is healing, but I may just have gotten used to it.  This is very common, and one thing the SLP (speech language pathologist) works on.

Miah could be a speech therapist someday.  She already works with Ami on trying new sounds.  It’s great.

Another thing we’re anticipating as Ami continues to heal is the dissolvable stitches falling out.  They must feel terribly weird to her tongue.  The doctor said sometimes they stay in for quite a while.  Evidently that is to blame for the lingering bad breath.  We’re thankful to be beyond the worst of it (think about the dried blood, raw tissue, and packing material of the first few days), but we are looking forward to getting rid of the bad breath entirely.  It doesn’t help that teeth-brushing has been forbidden, (though I have done a little, very carefully.)  We just make sure her mouth is rinsed well with water after every meal or snack.  We have all been amazed at how she has taken this all in stride, not even complaining about her limited diet (questioning, yes, but not complaining).  Until yesterday.  She cried, for the first time, about wanting food she could not have.  I take this as an indication that her mouth must finally be feeling better for her.  She’s going to be so excited when I finally hand her a spoon and she’s permitted to feed herself again.

A Somewhat Normal Week

March 5th, 2011

Ami seems back to normal now except for her restrictions (arm restraints and food/feeding).  Well, that, and sleeping through the night.  But it is much better.  She still has some stitches in her mouth, but it looks like some are also gone.  As far as we can tell, all is healing fine.  We’ll see what the doctor says in a few days.

After having time off from “normal”, the girls have really enjoyed playing together this week.

And being Mommy’s helpers in the kitchen.  (Although maybe that’s just torture for Ami, since she can’t sample what we’re making.)

But they do both really look forward to going to Grandma’s house.  You can imagine all the attention they get, being only two little ones, among several grown-ups.

We’ve had snow to enjoy, also.  Sometimes only in our view of the mountains, and sometimes falling down here, too.

Last Sunday, Miah and I got to go on a date with Grandma, Nancy, Tish, and Kaelan.  It was good for her and I to have some special time, considering all the attention Ami has been requiring lately.

It was a real treat to see such talent and grace up close (and in our own town!)

Miah was probably most impressed by the ladies’ sparkly outfits.  She did enjoy the skating also.  We all did.  Thanks, Mom!

What Does Recovery Look Like?

February 22nd, 2011

From seeing Ami two days after surgery ↑ someone who didn’t know better might not realize all she is going through.  She actually does pretty well when we stay on top of her medications so she doesn’t feel the pain.  For the first couple days this meant giving meds every 2 or 4 hours round the clock.  Now that we are a few days past surgery, she doesn’t need them as frequently.  She also gets ear drops 3 times a day for a week.  Ami doesn’t enjoy either procedure.  She has been more irritable and fussy, especially right after waking up or when meds are due, but overall, she’s really doing well.  (The band aid is to keep the sun off the scar on her lip.)

3 Days Post-Op

Thankfully eating hasn’t been a problem.  Some kids will refuse food/drink (either from pain or because the mouth feels so different), but supposedly most are happy to get food in their bellies.  While in the hospital, I asked Ami if she wanted applesauce, and she said, “Yes.”  After one bite she didn’t want any more (she was eating pudding, yogurt, smoothie, etc.)  After we were home she again refused applesauce.  I gave her a bite anyway.  Then she wanted more.  I realized it was because she’s used to my homemade applesauce, and the one at the hospital just didn’t taste right!

Letting Mommy sleep in

For food, Ami is restricted to a soft, non-mechanical diet (pretty much baby food consistency) for 4 weeks.  Some more conservative doctors say liquid only for the first week.  So we have been careful.  We don’t want anything to poke or to get stuck in the sutures and compromise healing.  We also don’t want food that may stick there so that she is exploring the area with her tongue.  She’s already gotten a sore on the tip of her tongue (it’s much better today) probably from running it along the stitches in the gum cleft, as I know she has a habit of putting her tongue there.  So far she has been enjoying pediasure, pudding, yogurt, blended soups,  cream of wheat, apple/pear sauce, and fruit and yogurt smoothies.  We’ll probably start expanding her diet soon to include puréed whatever we are having.  After eating, we give her water to clean any left over food from her mouth.  Although she knows the rest of us are eating different food, she hasn’t complained too much.  Yet.  She has specifically asked for tomatoes, orange sections, and toast.  And we have to say, “No.”  (She’s supposed to avoid acidic, anyway.)  Miah has foregone her regular snacks and also has yogurt or smoothies, so that helps.

5 Days Post-Op

Probably harder to handle than what she is eating, is how she is eating.  Ami is not allowed to feed herself.  NO objects are to go in her mouth.  Either I feed her with the side of a large spoon, or she drinks from an open cup.  She often asks to feed herself, but it is not an option for little miss independent.  We just can’t take any chances of injuring her fragile palate.  The goal is not to develop any fistulas (openings – back through the palate).  Some patients will have this problem, and some won’t.  We’re hoping and praying that Ami will have complete healing.

Reading with Grandma

In addition to managing pain and changing her diet, Ami must wear arm restraints (also for 4 weeks).  Specifically at night.  We want to be sure she doesn’t put her hands, fingers in her mouth while sleeping.  Thankfully she isn’t a finger/thumb sucker, or sleeping would be more difficult.  During the day, if we are watching her, the “no-no’s” can be removed.  The key is, if we are watching her.  Ami is not one to put things in her mouth, generally, but you just never know with a 28 month old.  She knows she is not supposed to put her hands up near her face, so she does not, if we are watching her.  But she has the personality of doing things her way, and if she doesn’t think we are watching her, she’ll do whatever she wants…So, she does wear the “no-no’s” throughout much of the day as well.  Just so we don’t have to follow her around and monitor her quite so closely.

No-no's from the hospital

The arm restraints were a big problem the first couple nights.  Ami hugs her teddy bear for comfort, and she really couldn’t do that with the “no-no’s” on.  She also sleeps on her stomach and side, and she couldn’t roll over with these foreign straight appendages.  After getting home, and seeing Ami actually move around with them on, we realized they were just too big for her!  Fortunately, I knew that “G” (who had this surgery just recently, and lives nearby) was done with her “no-no’s”.  So I gave her Mom a call, and she delivered us two sets of a smaller size, freshly laundered.  What a blessing!  Ami was actually willing to put them on, because she has arm movement with these, she can still play, and hug her stuffed animals, and scratch her nose with her arm if she has an itch.  They just prevent her from reaching her face with her hands.

Using the borrowed no-no's

Our Time In Seattle

February 20th, 2011

Valentine’s Day this year kind of got lost in all the surgery prep and the early morning drive to Seattle.  But we did exchange cards, and chocolate, and Miah made me a lovely card in the hospital play room while Ami had appointments.  After those were done and some of us had napped, we went to the Old Spaghetti Fact*ry for dinner.  This was the second time there for the girls, the first being the day before Ami’s lip repair!  Poor girl probably won’t want to visit there again, now, if it always means surgery the next day!  Thank you Papa and Nana for the nice evening, and full bellies.

Yes, Miah finally reached 40#, which is great.  Booster seats are much easier than car seats.

We had a leisurely morning in the hotel before heading off to surgery.  Grandparents are wonderful for “spoiling” our girls.  Thank you, Papa, for the climbing bears, and Nana, for the kimono.

While we were at the hospital, Papa and Nana took Miah to the Children’s Museum.  It looks like they had a good time.  Miah also came home with new goodies in her bag, that she has been sharing with her sister.

And they both got new stuffed animals, which they love.  It was interesting watching Miah when they first came into the hospital room the day after surgery.  She made no recognition of Mommy or Daddy, but made a bee-line straight to Ami sleeping in the crib.  We couldn’t ask for a more devoted big sister.  Ami is blessed to have her.  And Miah is blessed to have Ami.