Monday, April 22, 2013

Catching up...

The past week has been a whirlwind.  After throwing together a surgery date for Cora and Thalia to get their tonsils and adenoids out (and for Thalia to get tubes) in Billings, we ended up having to do three pre-op appointments, including a cardiology visit for Thalia in Billings.  We learned that although her medical reports from China said her heart was healthy, she actually has mild leaks in her aortic and mitral valves.  Ironically, these leaks have nothing to do with Down syndrome, but are probably due to her having had rheumatic fever at one point.  :o(  She'll have to be seen yearly, and at some point they'll have to be surgically managed.

The T&A surgeries went well.  We stayed overnight in Billings in a hotel just to make sure all was well, and then headed home.  Unfortunately, Thalia completely quit eating and drinking, and what little we were able to get into her she threw up.  That night (Tuesday), Thalia also threw up a surgical sponge!  We have no idea how she swallowed it, but we called the ENT and he speculated that it had come from the anesthesiologist since all of his sponges have a blue radiographic thread in them.  He asked us to save it and bring it to him at our follow-up appointment, but I also called the manager of the surgery center to let her know about it.  She said she would investigate it and would start with the anesthesiologist as well.  We'll see what they find out.  I'm just grateful Thalia didn't choke on it or something!

Anyway, Thalia got so dehydrated that we had to take her in for IV fluids on Wednesday.  On Thursday she was no better, so she was admitted and didn't leave until Saturday.  She absolutely would not eat or drink, and she was super lethargic!  I was really starting to worry, so our bishop and Curtis gave her a blessing on Friday night.  Miraculously, within one hour, she was eating, drinking, smiling, and using the bathroom.  I know that she was healed by this blessing.  We were able to take her home the next morning and she's been doing great since.

Cora, on the other hand, has done well with the after care, but is now facing the real possibility of having to have another surgery.  She had such enlarged tonsils and adenoids (her tonsils TOUCHED in the middle!) and snoring/apnea that we really had no choice but to remove them, but now she's left with a significantly hyper nasal voice.  She is unable to build up any oral pressure for sounds like p/b and t/d, so they come out sounding like m and n, and all of her speech sounds resonate in her nasal cavity.  She sounds they way a child with a cleft palate does.  I'm just sick over it.  She doesn't need one more problem in her life or one more thing to make her different.  I'm going to call the ENT's office today and ask if we can do endoscopy at her follow-up to determine whether she's got enough structure to work with (and therefore therapy might be helpful) or whether she'll need surgical management.  My gut tells me it will be surgery.  Dang it.

Joshua emailed today and is doing great.  I can't wait to talk to him via Skype on Mother's Day!  He's such a great kid and I miss him a ton.

Teffy is going prom dress shopping tonight for her Job Corps prom next month.  I'm excited for her.

Zoe is busy planning her graduation activities.  I'm ordering her announcements today.

Ethan is doing great with soccer.  He had two games in Livingston over the weekend which they lost, but he had fun.

Jonah has been sick but went to school today.  He, Zoe and Ethan also had district music festival over the weekend.  They find out today what their ratings were.

Loundia is busy with track and tried out and made it on the high school dance team for next year.  We're really proud of her.

Lily is also busy with track.  Her IEP is coming up and we're hoping we can FINALLY get them to commit to get her a full-time interpreter.

Maizie is doing great and enjoying all the new skills she's learning in gymnastics.  The gym is expanding soon and she's thrilled about all the new space and equipment, plus they're getting ready to start competing around the state.

Sofie is big into gymnastics right now too.  She's doing well in school and generally happy these days.  :o)

Thalia and Cora should be going back to school in a couple of days, and I know they're looking forward to that.

Jackson is kicking hiney all over the soccer field.  He gets goals in every game they play.  It's so fun to watch him!  We've never had such a sports-inclined kid!

Beck is counting the days until he is no longer a kindergartener.  He's enjoying his hip hop class and wishing he could be on Jack's soccer team.

All the kids just had their piano recital last weekend.  I'll try to get some video uploaded soon.  They did great.  :o)

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