Friday, June 30, 2006

Sleep Study Results

Kennedy's surgery has been scheduled for August 23rd at 9am central time. Please continue to keep her in your prayers!

OK so 28 days later we FINALLY got Kennedy's results from her sleep study. Let me tell you why the sleep study was done (besides the fact that she snores and is a restless sleeper and the list goes on and on). Kennedy's tonsils are huge. They are almost touching each other. "Kissing tonsils" that's what her pediatrician called them. She said they need to come out, possibly her adenoids too, so we go to ENT.

ENT looks at her medical history and sees she has a history of vascular anomalies and says, "No way not doing it! Too risky!" Then he asks about sleep patterns and decides to do a sleep study which was done on June 1st. You might remember me posting that getting her to sleep that night was difficult, but once she fell asleep and they hooked her up to all the wires I felt like she slept soundly. I thought "oh man he's going to tell me I'm crazy and kick me out of his office!" LOL

So today he comes in and sits down and says, "Kennedy has severe sleep apnea". She stopped breathing at LEAST 8 times every hour and her O2 stats dropped to and stayed at 79%. So obviously her tonsils and adenoids are coming out. The catch is these anomalies. Her ophthamologist wrote her ENT a letter telling him about Kennedy's eye surgery. If you don't remember that, he burst one of the anomalies in her nose and she bled A LOT. It was a scary ordeal. Her ENT is nervous but said it's more dangerous NOT to do the surgery so it has to be done. He promises he will be extra careful. There's also the issue of her still having food in her stomach during her endoscopy in February. The cause of that is still not determined, so she needs to be watched closely for aspiration.

I'm so used to doctors saying "piece of cake, no big deal, we'll fix it." This doctor is saying "This should be no big deal, but it is." On top of all the weird stuff we have the fact that she is 2, she has Down syndrome and a floppy airway. He was then nice enough to mention he had a patient not too long ago with Down syndrome who died from this surgery. Nice! LOL I really don't think he was trying to be negative, he was being realistic and maybe thinking out loud a little too much.

SO, here's the plan: On Monday I will call to schedule her surgery. After surgery she will be in the peds ICU for at least 24-48 hours. After that if she's doing ok they will move her to a regular room. He said to expect to be there for 5-7 days but not to be shocked if we're there for 10. Fine by me! I'd rather be where she's monitored 24/7.

I'll let you know when we have a date and all that stuff... until then, start praying for my baby!!

Oh and as I'm on the way out the door he says to me: "You know the only difference between a terrorist and a 2 year old?...
You can negotiate with a terrorist!"
At least he has a sense of humor!

Sunday, June 25, 2006

It's signing time with Kassidy and Kennedy!!

Signing Time! is a set of DVDs designed to help teach children sign language. We own volumes 1-9 and my kids just LOVE them!! Kennedy is learning so much and it makes it so easy for her to communicate with us!! To find out more about these great DVDs and videos go to The Signing Time! Website.

Not all their clothes match, I swear!






Daddy (Kenn turned her head, so her hand's in the wrong spot! LOL)

Apple (again her hand's in the wrong spot... oh well!)










Kennedy LOVES Leah (the little star of the show) she calls her "EEEEAHHHH!!!" So here she's trying so hard to make an L! LOL

All Done!

Good job!

Kenn can also sign milk, shoes, socks, thank you, mom, grandma, ball and book... and a few more, I just ran out of words when I was taking the pics! LOL

And this completes your signing lesson for the day ;).

Thursday, June 15, 2006

Summer Update

Has it really been a month??? Doesn't seem possible! We are well into summer here... the kids are bored and want to go back to school... I've been keeping them busy with work books and they are enjoying that! Guess I will use that while I can!!

Everyone's well here... Kennedy has a few routine appointments coming up. She had a sleep study done on June 1st, and we will get the results on the 21st. Here are a couple pics:

On the 4th we went to a picnic with the Down syndrome Association of Middle Tennessee. We had a GREAT time! It was at Nashville Shores which is a water park. A friend and her husband even talked Kass and Kam into going down a big slide with them! They are braver than me! LOL

Now we are gearing up for the National Down Syndrome Convention the end of July. I can't wait!! I went last year when it was in California and had such a wonderful time! This year it's in Atlanta and I'm going as a vendor selling products from my store. I can't wait!!!

Well... I guess that's it! I will update again soon!