Monday, August 31, 2009

Monday Moment for Down Syndrome - Soeren Palumbo

Most of you have probably heard this speech... if you haven't, take the 10 minutes. It's a message I've talked about before. But he says it so well, for someone so young... and with school starting, we need this reminder. Teachers, please set the example, and don't let the discrimination happen in your class this school year!

Kassidy's project

You can click on any of these to enlarge...

Indian Dwelling Place

View from the air lol

OK Frank totally made this bow and arrow! This is what he did while Kassidy did the rest of the stuff... when this project comes home, he's taking this back! haha Look at the detail in this thing! (Under it you can see the detail of the sand that's covering the board. I don't want to think about how much of this is in my carpet right now...)

The Indian Chief and fire pit. See Kassidy's clay bowls? She also made the bale of hay for the bull in the background. Frank helped her form the fire pit and then Kassidy used twine to tie together the extra firewood off to the side. The fire is made of foam and the smoke is cotton which Kassidy pulled apart and formed into smoke.

Tee Pee number 1. Kassidy drew all the designs. She looked up the Sioux Tribe on the Internet to find symbols they would have used on their Tee Pees and drew similar ones. I think she did a great job!

Tee Pee number 2, more designs from Kassidy (and another arrow and holder from dad!)

This poor buffalo is about to be dinner. (See the Indian in the background with the bow and arrow?!) I joked that they were going to cook buffalo burgers over the fire, but Kassidy informed me that they probably didn't eat burgers back then. Fine. LOL

And that's life on the farm Souix Indian Dwelling Place (not perfect, but LOTS of fun!)

Sunday, August 30, 2009

Q&A #105

GI Issues:
Confused...why would she say Miralax for diarrhea when that is a laxative?
Also, if you would like to take advice of the above person and just take a stool sample in for kicks...I have a kit here at the house they gave me for Patrick "just in case", but I can get another really easily.

I answered that in my last Q&A, but basically it was because Dr. A believes it was really because Kennedy's constipated... which is stupid... for reasons that I listed below. I have kits here too. I'm still waiting on J. Trying to be patient. We'll see what happens this week. Thanks though! :)

Ummm let me see if I've got this right. You saw Dr. M who had a plan. Then they tried to shuffle you back to Dr. A who is clueless. Then they are telling you you can have whoever you want for your doctor. And now they are telling you to see Dr. W for him to form another plan different from what Dr. M suggested, but then he won't be following through on that plan? Lets just pass the buck onto everyone else. How did you get into Dr. M to begin with? Has anyone talked to Dr. M to see if how he feels about seeing Kennedy again? Are these people living in this world? Ugh, I hope you can get this figured out for Kennedy. Seriously I think you need to speak directly with Dr. M about this since he's the only one who seemed helpful there.
Yep that sounds about right!! I got to Dr. M through a nurse from a different clinic. She called and made the appointment specifically with him. The GI clinic is now saying that was an accident. NO it wasn't. I'm not sure if anyone has talked to Dr. M or not...

Renee, have you tried giving Kennedy probiotics? It may be something that she could benefit from. I started giving Ralphie probiotics after he had a scary bout with rotavirus. Of course I didn't ask the Dr. first, (I do what I feel is best and ask questions later!) but she said they would probably help when I told her about them.
That's actually part of Dr. M's plan, so yes, we're going to start her on those. We tried them before (during her 9 month stint) but even though I was giving her how much Dr. A recommended, Dr. M said I probably wasn't giving her enough) SO I'm really hoping they will help!

Random question- How does Tricare work in all of this?
Tricare covers ALL of Kennedy's medical expenses, thankfully!! We have had VERY little problem with them. I've had a couple battles over her therapies, but overall it's been pretty smooth sailing, I have to say. I just have to remember to get pre-authorized for all her appointments (which her pediatrician is great at helping me with). We do pay a co-pay for her prescriptions but only because I use an off post pharmacy, and that's my choice. (Meaning I COULD go to Post and get them for free, but it's far enough away that by the time I spent the gas money, I may as well just pay the $3 or $9 LOL.)

I needed this! Can I use this on my blogs????
Absolutely! Please do! :)

Kennedy's face in that first picture is the same face you had when I brought you into that field haha!
*Ahem* Yes well, at least I know what I looked like now! hahaha

I'm so glad everything went well! Did Kitty come through okay, too? Kennedy's a very brave little girl.
LOL Yes, Kitty survived the ordeal! They even let her keep her jammies!

I'm glad to hear everything went well with the tubes! I thought T-tubes and Titanium tubes were the same thing, but Kayla's last ENT told me they were different. Her last set put in are T-tubes and I kpet saying to the ENT "I thought you put T-tubes in last time?" and he said "No they were Titanium last time" He told me T-tubes have longer phalanges (sp?) and are supposed to hold in better - I hope so! But now I'm confused on if T-tubes and Titanium are the same! LOL
Well shoot! That may be MY mistake!!! I know for sure that Kennedy got T-tubes... and I just assumed that was short for titanium tubes because he had talked about those briefly in the consult appointment in his office as a possibility... soooo maybe they ARE different. LOL

Certainly glad to hear that all went well. You are putting more miles on I-24 than I am. I'll be in town on Wed. to check on my mom.
"on the road again..."

Oh gosh, you're not kidding!!! We did Vandy on Monday and Friday and Franklin on Wednesday and Saturday this week!! I'm beat! Drive safely!! :)

Okay I am Surprised they let you take your camera into the concert! I had to borrow my sister's little digital for Justin Timberlake and then stuffed it into my pants to sneak it in!! Our Arena's do searches for cameras, lol.
You know, you're the second person to say that! EVERYONE there had cameras! There was a lady a couple rows ahead of us who was video taping even! Maybe it's the policy of the arena?! When we went to see HSM in Little Rock we were not allowed to use our cameras.

You know, I was admiring the fact that you could keep up with her carepage AND your blog! You crazy woman!! It'll be nice to have it all together here!! Good luck with the transfer!!
Well... I'm not actually transferring her carepage... just her caringbridge page which came first! LOL I'll think about carepages later. I have about 3 years of caringbridge to get through and I only got one month done! haha

Sounds like a fun project. My daughter Tammy is in the 4th grade and shes already got a project too. Hers is do do a poster board of her life in a time line. She needs at least 5 events. So we did like 20, LOL! We pulled the baby books out and did her 1st stuff like, walk, tooth, roll over and then we did her heart surgery and few others. It was really a fun project and good way to spend time with her.
Awww Kassidy did that last year in 3rd grade!!! We had so much fun with it!!! Here was hers.

Wow my sister is actually making a teepee right now too. Shes in 5th grade. We are not having the best time with it. Any tips?
Frank found a bunch of stuff at Hobby Lobby (an arts and crafts store here... if you don't have it where you are, you might have a Michael's which is similar). He bought little plastic Indians, bought pieces of suede for Kass to make the tee pees, a project board to put everything on. We got sticks from our yard. He bought modeling clay and Kassidy made little bowls. Kassidy decorated the suede with little designs from the tribe which she looked up on the internet. Frank bought sand... not sure what it was actually called, but it was this sand looking stuff and this white moss stuff for the animal's hay. Kassidy looked up on the internet which animals would be there, what Indians would be correct (for example the tribe she is doing wears full head-dress so some of the Indians in the tube he bought would be inappropriate so she had to pick the right ones). Frank helped her glue everything down (spray glue works best but probably not safe for young kids to use alone). He helped her form a fire pit from some of the sticks and today they are going to create a fire from red saran wrap and smoke from separated cotton balls. Hope that helps some!!

I'll never understand why parents "help" kids with their projects. It is the childs job to do these things..... It is a school project. Why allow a parent to do something that is the child's responsibility? What does the child learn? How does it help.
It is so frustrating to see these "perfect" projects where the parents "just helped"
if your kid can't find the time to do a project on their own(it is their school and grade after all) then you need to find the time so they can. Its so sad when a kid says "oh i don't have to worry about finishing that project...dad will help."
where is the honesty?

WOW Brenda! I'll never understand how people can be so judgmental when they don't even know what they're talking about! KASSIDY did the research. KASSIDY did the drawing. KASSIDY decided where everything should go and what should go on the board. KASSIDY can tell you all about her tribe and why the Teepees have open holes in the top and why the extra pole comes off the side so they can close that hole for warmth in the winter. I didn't know this until KASSIDY told me because KASSIDY looked it up. Frank won't be there when KASSIDY goes into class and presents the project that SHE did. And guess what? Her DAD helped! Heaven forbid she has a parent who is involved in her school life and wants to help her succeed! NO he didn't DO her project! SHE made the bowls. SHE drew the designs. SHE made the decisions. Did he glue things on for her? Yep! Did he cut the suede for her? Yep! Because it was expensive and we had one shot to get it right. BUT guess who cut the paper template? Yep! KASSIDY did! And guess who's going to have the fun memories of this project? Kassidy and Frank! And he was really excited to be home for this one because for all of her 5th grade projects he'll be in Afghanistan and won't GET to help. And in a few years our daughter may not WANT our help anymore in ANY area of her life, so for now we will cherish any time we can spend with her. We will take pictures and we will love every moment. Frank didn't do this because she didn't have enough time. He did it because he WANTED to spend time with his daughter. And KASSIDY did the work and can probably tell you more about her Indian tribe that you'll ever know. So before you judge someone why don't you get your facts straight. How's that for honesty?

Saturday, August 29, 2009

School Projects

It's that time of year again!!! Not long after Kassidy's teacher told us they wouldn't have many projects this year, she sent home a HUGE one! AHHHH! LOL Fortunately Frank is home this year and he LOVES doing this kind of stuff! The task? Create a Native American Dwelling Place. Kassidy was assigned a Tee Pee. Here they are working on it this morning. You'll have to wait for the final product! :)

SLOW transfer...

In an effort to get everything into one place, I will slowly be transferring all the info from Kennedy's old caringbridge page over to here. I tried to transfer it to her carepage, but they wouldn't let me mess with the dates, so to here it is! I don't think you'll even notice as I will be starting with 2005, but if it shows up in your google reader, (not sure if they will or not...) you'll know why! (Those of you who get entries emailed to you, you may want to unsubscribe for a bit! haha)

Friday, August 28, 2009

Home again!

We are home from Vandy, everything went well today! Kennedy's ENT said that her ears were FULL of thick fluid. Her ears drums were squished. He was surprised her hearing loss was only showing up as mild. He put in T-tubes (Titanium tubes) instead of the normal PE tubes. He said there is a slightly greater risk of these tubes leaving a hole in the ear drum, but he said in Kennedy's case this would be a good thing because it would keep the fluid draining out. Also, the T-tubes stay in longer than the PE tubes tend to.

After the tubes were in, the audiologists went in and did the ABR which is the most definitive hearing test they can do. This would tell us for sure if it was the fluid causing her hearing loss or if it was a more permanent hearing loss caused by the chemo. After the test was done, they came out and said that her hearing is back in perfect range! :) She still has to have it checked every 6 months, but for now there is nothing to worry about! HUGE answer to prayer!!!

Kennedy did great overall, she had a little bout of nausea after waking up, but they gave her a dose of Zofran and she was able to keep some apple juice down after that and then we were able to go home. She slept the whole way home, and then ate as soon as we got here and now she is up playing with Keeghan!

Here are some pics from pre-op...
Getting her vitals checked

And checking Hello Kitty's vitals too (Kitty came in with a fever, Kennedy said)

Kennedy and Hello Kitty in their matching jammies

Driving the car in the hallway... she was trying to talk the nurses into giving her McDonald's! LOL


While Kennedy was in surgery, I met a dad in the waiting room who's daughter is battling Leukemia right now. We of course had some things in common to talk about! Turns out he has had some issues with a doctor at Vandy and has had to hire a lawyer. After tell him our GI nightmare, he gave me his phone number in case I ever need his lawyer's info. Hopefully I won't need it, but it's good to have! On the way to the parking lot we ran into Dr. A. She didn't recognize us. (Probably because it's been YEARS since she's seen Kennedy in her office.) My mom has always told me, "If you don't have anything nice to say, don't say anything at all." I bit my tongue and kept walking.

Off to Vandy

We're off to Vandy for Kennedy's surgery. Surgery time is at 1:30. I'll be updating via twitter and facebook. Please say a little prayer everything goes smoothly and that Kennedy does well with the anesthesia! I'll blog when we're home!

Q&A #104

You got some amazing pictures! Were you sitting really close?
Yes! We were on the floor, about 8 rows back! VERY good seats, and it helps to have a good camera, too! LOL

That looks like a lot of fun!! At least you know who each one of the Jonas Brothers are!!! I don't even know that, and I'm 17!! Shouldn't I be the one pointing each one out?? =]
LOL Kassidy schooled me (she likes Joe... FYI LOL). Kameron though was the one to give me all the dirt... which one's engaged, which one dated Miley Cyrus etc. He's up on all the celebrity gossip! HA!

My oldest (16) loves Jonas Brothers! She was mad (that she didn't get to go!) and excited all at the same time to see the pictures you posted. She is wondering if you wouldn't mind if she printed off one of the pictures of Nick....since after all that is who she will me marrying in the future (her words, not mine!). I'm glad you guys had a great time!
Tell her that I wouldn't mind at all, but umm, in exchange, can we come to the wedding?! ;)

I'm hoping Renee will let me post it too, will you Renee? It's oh so very heart opening, I love it!
Absolutely! Always feel free to post any of my "fun stuff" on your blogs! If I got them off another blog I always link back to them so you know where it came from, that particular one was sent to me via email from a friend in California! I'm glad you enjoyed it! :)

Oh and those pics you took are great!! I think we have the same camera (Canon Rebel Xti?) It's a pretty good little camera. :)
Yep! That's the one! I love that camera! Except for the flash... when I'm trying to take a ton of pics in a row, the flash sometimes goes "busy" and then it won't let me take pictures. REALLY frustrating! Hopefully for Christmas I'll get an external one and that will solve my problem! :)

legally you have the right to choose who you want to see. I don't care what their "office policy" is, I think state and federal law supersede that, don't you?
Well I DO think so, but so far it hasn't mattered much what I think. *sigh* Good to know it's law though!!! :)

Uhhh, your insurance covers Dr. M too I'm assuming? I mean it must they are in the same practice. So why would it even matter?
Oh yes, he takes our insurance... that's definitely not an issue.

UGHHHH!!! Is it possible no one is even talking to Dr. M and informing him of all this. Maybe they are just assuming he will not take Kennedy?
It's possible. I'm actually REALLY hoping this is the case!

Odd (to me) that Dr. A would recommend Miralax for K since Miralax is what Micah takes for constipation, not diarrhea (in fact, the first question they ask when Micah gets sick with diarrhea is whether I've stopped giving the Miralax while he's sick... seriously, people, do you think I'm stupid?).
WELL Dr. A's ongoing theory about this (which I argued until I was blue in the face forever) is that Kennedy was in fact constipated and she was so backed up that the diarrhea was coming out AROUND the blockage of constipation. Thus the Miralax to clear up the (unproven) constipation and therefore clear up the diarrhea. While I know that this CAN happen, Kennedy's tummy is, and always has been, soft. There was no hard ball of constipation in there anywhere. When she was a baby she had chronic constipation. She was on Miralax for it. Besides the tummy cramps she would get, I could always tell when she was constipated just by the hard lump in her tummy. (I too, am not stupid, imagine that! LOL) If she were REALLY worried about constipation bad enough to give her diarrhea to shoot out around it 12 times a day (which is how bad it was during her 9 month stint) you'd think she would have wanted to do an ultrasound, or at the VERY least see her in her office!! And we won't even TALK about the fact that she prescribed my child who didn't even weigh 20 pounds TWICE the adult dose. Seriously.

Have you though about taking her to a doctor who does complimentary medicines?
Also, I can no longer eat wheat or dairy without severe consequences, maybe this is an issue with Kennedy? The brush border is wiped out from chemo, often does not regenerate. I have been on digestive enzymes since chemo ended in 2003. Something to look into.

I've never heard of complimentary medicines... what is that? We have taken Kennedy off dairy for a couple months (during the 9 month stint) to see if it would help, but it didn't. I will ask about the wheat though, if we ever get to see a doctor.

Can I come to your town and help you with this. There is nothing I hate more than stupid people who try to control a situation that they have no business doing. Have you considered calling a local news station or paper? Call the governor of your state. I would call anyone who will listen.
I've thought about our news. We have a segment called "That's Messed Up" BUT I'm going to see what J (patient advocate) does first. She has helped me with things before and she's trying, so I don't want to step on her toes. If she goes as far as she can and they STILL won't budge, then I'll go outside the hospital for help if need be.

Thursday, August 27, 2009

Frustration! (Part 2)

OK so when I left off in my last post, I had talked to the patient advocate about everything that had happened at the appointment. She (J) agreed with me that the nurse was way out of line. I absolutely can see a different doctor! There is a process I have to go through, but it is possible. Also, a nurse should never be sending patients to a different hospital. (Ya think?!) J and I have talked about Dr. A before at length so she already knew why we didn't want to be seen by her. She knew that we left Vandy GI for Cincinnati because of Dr. A. She assured me she would get to the bottom of all of it.

A few days later my phone rings and it's Vandy. Imagine my shock when it's Dr. A on the other end of the line! She was so overboard nice and said "OF COURSE we can switch doctors" and she is SO pleased that Dr. M has ideas about Kennedy's diarrhea because she has been trying to figure it out for "five YEARS now" with no success! (Funny, since she's only had it for 2 years... AND it would have helped if she actually would have SEEN Kennedy IN her office for a clinic visit or *gasp* checked her stool!) She wanted to know the name of the nurse I spoke to, which I didn't know. (My mom has been drilling into my head for as LONG as I can remember to TAKE NAMES, but when I get upset I just can't seem to do it! It drives me crazy!) Dr. A said she would definitely figure out who that nurse was and make sure nothing like that ever happened again and in the meantime she would be talking to Dr. M to see if he would take Kennedy on as a patient because that was all that had to be done and she would make a note that I really wanted Dr. M to BE Kennedy's doctor. She again said how "pleased" she was that someone was finally figuring this out.

After we hung up I felt like I just might puke from all the fake sugary sweetness, but at least I felt like we were getting somewhere. I was a little surprised though that J had her call me since she knows my... ummm... lack of fondness for her. BUT it was getting taken care of, Kennedy was getting a good doctor, and that's what mattered. Or so I thought. (Turns out J didn't tell her to call, Dr. A did that ALL on her own... most likely to keep control of the situation.)

Yesterday I get a phone call from Vandy. Somehow I missed it and it went to voice mail. It was Dr. A's nurse asking me to call her back. We play phone tag, and when she finally gets a hold of me she tells me that Dr. M cannot see Kennedy because his patient load is too full. WHAT?! He made NO indication of that when we saw him in the office a couple weeks ago! Nevertheless, Kennedy cannot be his patient, she says. What they CAN do is assign her to Dr. W. A very good doctor, she assures me! HOWEVER he will only see Kennedy for ONE appointment. The FIRST visit, JUST to develop a plan. After that? She will be shuffled between Fellows. Are you FREAKING kidding me?!

(I need to enter a disclaimer here. I have nothing against Fellows as a whole. Kennedy's oncologist was a Fellow. We LOVED her, and so was her endocrinologist and we loved him too, for the short time we had him before he moved. However, we've had horrible horrible horrible luck with GI Fellows and the word "shuffle" is key in that sentence.)

SO I lost it. Again. I said, "WHY is it SO hard to get quality care from THIS clinic?! THIS is not acceptable! Kennedy needs ONE consistent doctor. Dr. A has already admitted she couldn't figure out Kennedy's problem after FIVE years (her words) so you really think shuffling her from Fellow to Fellow is a good idea?! Seriously?! I feel like I've been beating my head against a wall with you people for her ENTIRE life!"

"Well Ma'am," she said, "This is all we can offer you. You can take it or leave it. What would you like to do?"

"What I'd LIKE to do is have my daughter see ONE doctor, preferably Dr. M, who can HELP her. But since you're being difficult, what I'm GOING to do is contact patient affairs. AGAIN. You'll be hearing from them."

SO I called J back, left a message and went back in to Kennedy's practice, where I don't get cell reception, which turned out to be a good thing. I got a voice mail a few minutes later from Vandy and it was Dr. A's nurse again:

"Mrs. Garcia, Dr. A said until you decide what to do about a Doctor, you can give Kennedy Imodium for her diarrhea."

Ohhhh she's very very very lucky I didn't answer my phone. You see, when we were going through this nine month stint before, when Dr. A wouldn't see us in clinic but kept suggesting things over the phone, Imodium was ALWAYS the first thing she suggested, followed by Miralax, followed my Milk of Magnesia. AGAIN, if she'd BOTHERED to look in her CHART, she would have known that THIS DOESN'T WORK!!!! Yes, I'm very very glad that call went to voice mail or VERY not nice things would have been said out loud instead of just in my head. Can anyone blame me for wanting a new doctor? A good doctor? A doctor who READS patient history? And really, should doctors be prescribing medication without looking in a file anyway? Seems kind of dangerous. I'm just saying.

SO J and I talked AGAIN today (actually I ranted and she listened) and she couldn't understand why they would want to assign Kennedy to Dr. W in the first place because he is a research doctor and therefore is only in the clinic a couple days a month. Things that make you go "hmmm". SO she's talking to the manager of the clinic. Again. And we'll see what tomorrow brings. It just floors me that Dr. M went from "See you in a couple months" to me being told his case load is too full. Sure would like to talk to HIM about that! UGH!

Frustration! (LONG)

WARNING: Vent post ahead. If you don't want to read it, feel free to click the red X at the top of this page. You have been warned.

Remember my bad day? Well, part of that bad day had to do with the GI clinic at Vanderbilt. I feel like I've been fighting with this clinic for YEARS (oh wait, that's because I HAVE!).

Since Kennedy has ended chemo in 2007, she has been battling diarrhea. It was REALLY bad during her last round of chemo and when they tested her they found she had a horrible case of C-Diff. This isn't all that uncommon for patients on chemo. They treated her with Flagyl, she was put on precautions, and eventually she got over it. No big deal.

HOWEVER, after she ended chemo she went on a nine month stint of constant diarrhea... huge blow-outs of mucous (sorry, gross, I know). She was testing negative for C-Diff at this time, and her oncologist had no clue so she referred us to her GI doc (who we've battled on other issues before). The doctor (Doctor A.) advised us on things to try over the phone but would NOT see Kennedy in her office, would not test her stools, or anything else. We tried everything she suggested, NOTHING worked.

Over the course of this NINE months her oncologist asked Dr. A to see us, she wouldn't. She kept telling us via phone to try different things, and when she ran out of ideas she would tell us to try things we had already tried! (Obviously she hadn't bothered looking at Kennedy's chart to see she had already recommended that, and it failed!) Finally, her pediatrician decided to do some stool cultures to see if she could figure anything out and everything came back normal. She had no idea what to do, but we were grateful to her for at LEAST trying! Dr. A finally said that maybe it was "toddler's diarrhea" (which Kennedy was WAY too old for at the time) or it was a "Down syndrome thing" (which is a bunch of crap... pun intended).

Eventually we got sick and tired of Dr. A and decided to go to Cincinnati Children's GI for help. We had heard a lot of good things about their GI department and at this point we were desperate! Kennedy needed to be potty trained to go to school and she couldn't be with the diarrhea. Not to mention that nine months of explosive diarrhea can't be good for ANYONE!

In Cincinnati we met Dr. Y who did a thorough examination of Kennedy and got a complete history (and an earful from me lol). She decided that since Kennedy had such a bad bout with C-diff in the past, she was going to go ahead and put her back on Flagyl even though she was testing negative for it now. She said that sometimes the gut just doesn't recover completely, especially after being on such high doses of chemo for so long and THEN having C-diff on top of that, and even though her tests aren't showing C-diff, it could still be lurking. Kennedy started on a course of Flagyl, and the diarrhea ENDED. She had her first NORMAL bowel movement in 9 months. I was in shock!

She had to stay on a monthly regimen of Flagyl for about 5 months, which Dr. Y said was normal and then her diarrhea tapered off into nothingness... Until June...

In June when we were on our road trip to D.C. and Philly, Kennedy's diarrhea came back with a vengeance. We waited it out to see if maybe she was just sick, but there was no fever or anything, and it didn't stop. We took her to her pediatrician when we got home and she did cultures which showed nothing. Great. We tried all the normal over the counter stuff to get it to stop, nothing worked. Lovely. I called Cincinnati and they couldn't get her in until October (Dr. Y was going out of the country on a mission trip, I think) and in talking to a friend here, we got the recommendation of a GREAT GI doctor here at Vandy... Dr. M.

My friend here assured me that Dr. M. understands medically complicated kids. Her son has Down syndrome as well and has been through the ringer medically. She said if anyone could figure Kennedy's problem out, it would be Dr. M. She was confident I would like him. One of the employees at Vanderbilt got Kennedy an appointment with him the middle of August. In the meantime, Kennedy's pediatrician gave her a prescription for Flagyl just to see if it would help. She was skeptical because Flagyl is a VERY specific antibiotic just FOR C-diff and a few other things, all of which Kennedy was testing negative for. The Flagyl worked. It doesn't make sense AT ALL.

Anyway, our appointment day with Dr. M rolls around. I have a weird, crappy morning on this very bad day so my nerves are on edge as I go to this clinic with whom I have a HORRIBLE track record, but I say a little prayer that this will be THE doctor that we have been waiting for. He was.

We get into the office, he comes in, introduces himself, gets a medical history, I explain everything right down to the fact that it's crazy that the Flagyl is working (which he agrees with), and he says, "OK here is what we're going to do..." and he starts talking. I'll admit I didn't take in ALL of what he said. He was thinking out loud for a lot of it, (and Keeghan was having a meltdown which is another story for another day) but he had ideas and a PLAN and he sounded like he could figure this out!!! I wanted to hug him! (Uhhh which would have been totally inappropriate! LOL But I made a note to myself to hug my friend who recommended him!) He gave me instructions, said he would see us again in a couple months, and left. This is where the nightmare starts.

The nurse comes in with written instructions and a return appointment time... for Dr. A!!!
Me: Ummm no, her appointment is supposed to be with Dr. M.
Nurse: Oh... it says here her REAL Dr is Dr. A...
Me: Yes, but we want to start seeing Dr. M...
Nurse: Ok, one second... (she leaves, another nurse comes in)

Nurse 2: What seems to be the problem?
Me: Well, we saw Dr. M today, we'd like Kennedy's return appointment to be with Dr. M.
Nurse 2: Kennedy is Dr. A's patient. She has to see her.
Me: We don't WANT to be Dr. A's patient. Dr. A has not been able to help us. Dr. M is finally getting somewhere with Kennedy's issues. Kennedy needs to be Dr. M's patient now.
Nurse 2: It was an accident that you saw Dr. M today in the first place. You should have seen Dr. A. You need to see Dr. A when you return.
Me: (starting to lose it) No... it was not an accident that we saw Dr. M today. I ASKED for Dr. M because he came recommended to me because Dr. A has been NO help to us. I requested Dr. M. We want to see Dr. M. NOT Dr. A. We left the Vanderbilt GI clinic and had to drive to Cincinnati to get help because Dr. A wouldn't even see Kennedy in clinic. She kept brushing off Kennedy's issues, and I'm not doing this again.
Nurse 2: It is the policy of this clinic that doctors do not see other doctor's patients...
Me: We no longer want to BE Dr. A's patient.
Nurse 2: You have already seen every doctor in this practice, we will not have you doctor hopping. If you don't want to see Dr. A, I guess you'll have to go back to Cincinnati.

And this is where my eyes popped out of my head. FOR THE RECORD, we have NOT seen every doctor in the practice. She named another doctor we had seen who I couldn't even remember! We figured out later that she came by Kennedy's room once when Kennedy was inpatient. I hardly think that counts! And there are TWELVE doctors in the GI clinic. Twelve. No WAY have we been through even 1/4 of those. Whatever. And to send a patient to a different hospital hundreds of miles away when there's a perfectly good doctor less than an hour from my house? Really?! Really. UGH!

Anyway, I refused the appointment, left in tears, and called my friend who recommended this doctor on the way home. She called hospital administration who told me to call patient advocacy (the patient advocate and I are becoming good friends *sigh*), and we started the process to get this drama solved.

But WAIT there's MORE!!! OK I need to take Kennedy to dance class actually, so watch for part 2 tonight... it gets better... or worse... depending on how you look at it. GRR

The Lord's Prayer

"Our Father Who Art In Heaven.

Yes?

Don't interrupt me. I'm praying.

But -- you called ME!

Called you? No, I didn't call you. I'm praying. Our Father who art in Heaven.

There -- you did it again!

Did what?

Called ME. You said, "Our Father who art in Heaven" Well, here I am.. What's on your mind?

But didn't mean anything by it. I was, you know, just saying my prayers for the day.
I always say the Lord's Prayer. It makes me feel good, kind of like fulfilling a duty.

Well, all right. Go on.

Okay, Hallowed be thy name .

Hold it right there. What do you mean by that?

By what?

By "Hallowed be thy name"?

It means, it means ... good grief, I don't know what it means. How in the world should I know? It's just a part of the prayer. By the way, what does it mean?

It means honored, holy, wonderful.

Hey, that makes sense.. I never thought about what 'hallowed' meant before. Thanks.
Thy Kingdom come, Thy will be done, on earth as it is in Heaven.

Do you really mean that?

Sure, why not?

What are you doing about it?

Doing? Why, nothing, I guess. I just think it would be kind of neat if you got control, of everything down here like you have up there. We're kinda in a mess down here you know.

Yes, I know; but, have I got control of you?

Well, I go to church.

That isn't what I asked you. What about your bad temper? You've really got a problem there, you know. And then there's the way you spend your money -- all on yourself. And what about the kind of books you read?

Now hold on just a minute! Stop picking on me! I'm just as good as some of the rest of those People at church!

Excuse ME.. I thought you were praying for my will to be done. If that is to happen, it will have to start with the ones who are praying for it. Like you -- for example.

Oh, all right. I guess I do have some hang-ups. Now that you mention it, I could probably name some others.

So could I.

I haven't thought about it very much until now, but I really would like to cut out some of those things. I would like to, you know, be really free.

Good. Now we're getting somewhere. We'll work together -- You and ME. I'm proud of you.

Look, Lord, if you don't mind, I need to finish up here. This is taking a lot longer than it usually does. Give us this day, our daily bread.

You need to cut out the bread.. You're overweight as it is.

Hey, wait a minute! What is this? Here I was doing my religious duty, and all of a sudden you break in and remind me of all my hang-ups.

Praying is a dangerous thing. You just might get what you ask for. Remember, you called ME -- and here I am. It's too late to stop now. Keep praying. ( pause ... ) Well, go on.

I'm scared to.

Scared? Of what?

I know what you'll say.

Try ME.

Forgive us our sins, as we forgive those who sin against us.

What about Ann?

See? I knew it! I knew you would bring her up! Why, Lord, she's told lies about me, spread stories. She never paid back the money she owes me... I've sworn to get even with her!

But -- your prayer -- What about your prayer?

I didn't -- mean it..

Well, at least you're honest. But, it's quite a load carrying around all that bitterness and resentment isn't it?

Yes, but I'll feel better as soon as I get even with her. Boy, have I got some plans for her. She'll wish she had never been born.

No, you won't feel any better. You'll feel worse. Revenge isn't sweet. You know how unhappy you are -- Well, I can change that.

You can? How?

Forgive Ann. Then, I'll forgive you; And the hate and the sin, will be Ann's problem -- not yours. You will have settled the problem as far as you are concerned.

Oh, you know, you're right. You always are. And more than I want revenge, I want to be right with You . (sigh). All right, all right . I forgive her.

There now! Wonderful! How do you feel?

Hmmmm. Well, not bad. Not bad at all! In fact, I feel pretty great! You know, I don't think I'll go to bed uptight tonight. I haven't been getting much rest, you know.

Yeah, I know. But, you're not through with your prayer, are you? Go on.

Oh, all right. And lead us not into temptation, but deliver us from evil.

Good! Good! I'll do that. Just don't put yourself in a place where you can be tempted.

What do you mean by that?

You know what I mean.

Yeah. I know.

Okay. Go ahead. Finish your prayer.

For Thine is the kingdom, and the power, and the glory forever. Amen.

Do you know what would bring me glory? What would really make me happy?

No, but I'd like to know. I want to please you now.. I've really made a mess of things. I want to truly follow you... I can see now how great that would be. So, tell me . . . How do I make you happy?

YOU just did".

Wednesday, August 26, 2009

Jonas Brothers Concert - Part 2

Last night, Frank and I took Kassidy and Kameron to the Jonas Brothers concert in Nashville. This was an early birthday present for them, with some help from Grandma (their birthdays are in November), and this was in place of their birthday party and big gift. A couple years ago we went to Little Rock to see a High School Musical Stage Show for their birthdays and they LOVED it, so we were excited to be able to do something like this again (and we didn't have to drive so far!)


Kass and Kam in front of the Jonas Brothers Bus before the concert...
Can you see the excitement in Kameron's eyes?!


Kevin

Nick

Joe


Kassidy and me during the concert, we had so much fun hanging out!!!


Kassidy with Andrew from Honor Society. They were one of the opening acts for JB. They're gonna be big in the next couple years!


Kassidy, her friend McKenna and another friend from school.
We knew they were at the concert but didn't think we'd EVER get to see them with all the people there, but we ran into them outside after the concert was over!


Kass and Kam in front of the bus before we head for home


Spraying half the audience with soapy water... thankfully we were on the other side of the stage! LOL

They put on a great show! Happy early birthday Kassidy and Kameron! :)

Wordless Wednesday - Jonas Brothers Concert (Part 1)

















(More to come)

Tuesday, August 25, 2009

Q&A #103

Question regarding Kellsey? Will you keep your adoption blog public or will you make it private? Why do some families make it private? I don't know what I will do if you make it private since I'm addicted to your blog!
We will probably go private, but we will try to find a way for everyone who wants to read to be able to. The reason families go private is so they can talk freely about what is going on while they are gone. They can talk about the good and vent about the bad. If they are frustrated about red tape, they can yell about it (and you all know how I feel about red tape! LOL). If you're public, you really have to be careful what you say... if a court official from over there happened to stumble on your blog while you were THERE, in the process of adopting, and you're not happy with their system for whatever reason, it could really mess things up. Also, it's just a personal security issue of not letting people know EXACTLY where you are. I want to be able to share freely with you all as it happens. I'll try to figure out a way to keep you all connected when the time comes! :)

YAY! That is so awesome! Is that your house? You have a great kitchen!
That would be my mom's house. They said they needed a big laundry room and well, I don't have one! (I mean I have a laundry room, just not a big one.) But yes, she has a GREAT kitchen and a great laundry room! And a great HOUSE! LOL

Did they give you a bunch of the Bounce Bars to keep? I have never heard of them, gonna have to check the stores, how do you like them?
They gave us a couple. I have opened one and touched one and I've stuck it and unstuck it to the drum of the dryer about 50 times (seriously) but I haven't actually USED it yet... no reason why, I just keep forgetting! LOL They are out in our stores now. I've seen them at Target, so they should be out everywhere. They smell REALLY good and feel like a bar of soap.

Loved it, I cringed when you wiped a face with a shirt, knowing how hard it is to get that out LOL. Great job!
Yeah, they told me to do that! LOL All the stains came out though... thanks to my mom! haha

That's really cool, Renee!!! Is that commercial going to be played everywhere?
Nope, just on Lifetime during Army Wives... not sure when it's supposed to air on TV.

That's awesome! You guys did great! I can't believe you kept this a secret!
LOL I'm REALLY good at keeping secrets!!! ;)

What happened to her old glasses?
Well... I have a few different answers for this.
1. They don't stay up very well on the (non-existent) bridge of her nose. She was constantly looking OVER the glasses and not through them, thus defeating the purpose of the glasses.
2. They're (almost) too small for her face so we'd have to get new ones soon anyway.
3. They're a slightly different prescription he said (not really sure why since it's for the same exact thing).
4. Every time I put those stupid glasses on her, something bad happens. Stupid, I know, and totally irrational, but STILL! LOL
5. (And most important to Kennedy) They're NOT pink! LOL

Did you go with Specs4Us? Micah's new glasses fit much better than his old ones did...
No... So, the ones we WERE going to go with were Fisher Price frames... it was these, but in pink:
BUT I got a call today and they're on back order until October, so now we're going with different ones... I have to take her in to try them on to see if they fit right on her nose.

Hope all goes well on Friday! And hope the glasses make it okay...don't get lost...smashed in some way or another....are they insured?
Nope! The frames have a one year warranty. *sigh* The lenses are covered by insurance. Should be interesting!

I have been so out of touch. What surgery is Kennedy having? Praying it all goes smooth.
Thanks! Just new ear tubes and an ABR. We're hoping it will correct her mild hearing loss!

Will be praying for y'all on Friday. Will Frank get to be there or will he have to work?
Thanks!!! Frank will be home with Keeghan for a bit and then he has to go to work. This is pretty routine though, I'm sure Kennedy will do great! :)

Is that the song she will be singing? If so...I have DVDs with it on it...and an audio tape too I think! I can run it by!
Yes it is! We have it on CD though, they emailed it to us and Frank burned it. Thanks so much though! :)

Hi. I keep up with your blog and this one about Kennedy starting school is especially interesting to me ... because it seems she is completely potty trained! Our son is not and is also starting Kindy. Any advice??
Kennedy is potty trained during the day, but she is still in pull ups at night. She wakes up dry about 75% of the time, but I haven't gotten brave enough to keep her in panties at night yet (because of the other 25%! HA!). She's been potty trained since she was about 4 1/2.
I really DON'T have much advice. I stink at potty training, really. (You'll see that next week when I try to start potty training Keeghan.) She was just ready. We rewarded A LOT. She is a kid that LOVES verbal praise (Kassidy could have cared less when she was potty training lol). Kennedy will still tell ME "good job" when I go to the bathroom (which is not embarrassing AT ALL when we're out in public! LOL). We really just overdid it on verbal praise with her! I mean we all like jumped up and down with excitement EVERY time she peed at the beginning (it got old QUICK but she loved it).
You just have to find what works for your son. For Kassidy it was bribery... we told her we couldn't afford to take her to Disneyland unless we stopped buying diapers (I have no shame!) and she was potty trained, just like that, day and night (which drove me NUTS because we had been trying for MONTHS and she had NO delays! LOL).
You can read some of Kennedy's potty training adventures here. You'll notice the dates are kind of all over the place. We started to potty train after she was done with chemo and then she was diagnosed with her AAI and so we had to stop and picked up again after her halo was off, so excuse the lapse in dates, but maybe it will help. I know the key thing is consistency!!!! Good luck!!!

Sing... Sing a song...

So... Saturday is the Down Syndrome Association of Middle Tennessee's annual Fall Fiesta. I LOVE Fall Fiesta! It's a night of live entertainment, good food, silent and live auctions and lots of fun people! It's one of our biggest fundraisers for the year.

Yesterday I got a call asking if Kennedy could be a backup singer on Saturday night for Lane Brody who will be singing there... SO she is now learning the song. They have dress rehearsal tomorrow night and then she gets to perform on Saturday night with some other kids! It should be SO cute! IF she can learn the song...

SO for the next few days if you see us, you'll hear us sing... sing a song... sing out loud... sing out STRONG!!! There will be video and pictures to share, of course!

Monday, August 24, 2009

Medical stuff

After Kennedy's IEP meeting this morning, she and I rushed off to Vandy. First we had an appointment with the anesthesiologists about her surgery on Friday. GI wanted her to be NPO for 12 hours because of her slow gastric motility and Endocrinology said no way because of her hypoglycemia! SO she is going to be without FOOD for 12 hours but she can have clear liquids (with sugar of course) up to 2 hours before surgery. Then they'll check her sugar as soon as we get there and if necessary they'll place an IV before she's put under. Hopefully they won't have to though.

After surgery (or maybe during) they will give her glucose through her IV so if she doesn't want to eat right away when she wakes up, she'll be ok! Looks like everything is under control! Her surgery is not until 1:30 on Friday so it's going to be a long day!

After that appointment we went to ophthalmology where he determined that her left eye is still turning in whenever she looks at things too close. Her vision is fine, she is just over-correcting with that eye. SO she gets to wear glasses. Fun. SHE is very excited about it. Me? Not so much. LOL We found her some cute pink (expensive) glasses. (For the record, SHE wanted hot pink Barbie glasses. She didn't get them. LOL But we compromised with light pink more suttle frames.) They have special frames which should sit well on the (non-existent) bridge of her nose. We should have them in a week or so. Her doctor said she SHOULD outgrow this by the time she is nine(ish). If not, he will correct the problem surgically. We're praying it will correct itself!!! Of course, I will have pictures when she gets her glasses.

OK that's it from me tonight, promise!

Kennedy's IEP Meeting

Today was Kennedy's IEP meeting. I've gone back and forth the last couple weeks from not being worried at all, to being in complete panic, to being just nervous today! haha Kennedy has a great team behind her this year! She will be in a regular classroom, where she's been so far, and one of the Special Ed. teachers will come into the classroom for 70 minutes during the day... 20 minutes in the morning, 30 minutes in the middle of the day and 20 minutes in the afternoon, just to check up on her. If Kennedy needs help, Hilary will be available to work with her, if she doesn't, she'll be there to just observe and help out wherever is needed. I'm so glad that Kennedy has the extra help available when she needs it!!

She will be pulled out twice a week for 30 minutes for group speech therapy with other kids. This will compliment her private speech therapy that she gets 2 afternoons a week after school already. They are putting in a consult with an OT who will talk about Kennedy's safety on the playground and in gym class. She will also make some modifications necessary for Kennedy to be able to reach the sink, the drinking fountain and the toilet without problems. They are going to have a 3rd grader help her carry her lunch tray to the table in the cafeteria so she doesn't drop it. This will avoid huge messes, I'm sure!

Other than that, she is pretty much a typical Kindergarten kid! She will be learning to read and write (and cut with scissors since her mean mommy won't teach her haha). We have some specific goals written out that she will be working towards, and I have no doubt she will meet them in no time! She FINALLY starts full time all day, every day tomorrow! She's going to be SO excited about that! (Keeghan won't be though!) It's going to be a GREAT year!

Sunday, August 23, 2009

Bounce Dryer Bar Commercial

So, we were trying to figure out how to get this to work so you could watch it here on the blog, but I'm not that tech savvy! LOL SO if you go to this link you may see the kids and me on a commercial for Bounce Dryer Bar. You may not. haha If it shows an Army wife from New Jersey, just reload and try again.

SOOO before you ask, a couple months ago, I got an email from a production company who found my blog and they were looking for Army wives with a lot of messy kids to do a commercial for a new product called Bounce Dryer Bar. They were paying $500, (which went straight into our adoption fund) so we jumped at the chance!

The kids had a blast! I never let them make THAT big a mess (even with spaghetti). I wish you could have seen the whole thing! It was hilarious! It took about 8 hours to film the 15 seconds they showed... LOTS of takes, LOTS of mess and LOTS of cheesy lines that they chose not to show (thank goodness!)... probably because I'm a horrible actress! LOL

It was a lot of fun though and we got to meet a lot of cool people on the crew for the day! :) I hope the link works for you and you enjoy it!

Edited to add: Frank figured it out! He's so good! :)

Q&A #102

Just catching up...did you get that no TV during the week thing from me? I know we discussed it on one of your visits. Em and Ryan have been stocking up, lol.
When do you come back, btw?

Yes, I did get that from you, Jen!! I know I thought you were crazy when we talked about it, but it's turned out to be the best thing EVER! We started it last Spring and picked it back up this year. It makes my life SO much less stressful! haha We will be back to Philly in January and then again in July and then after that only once a year... every July.

By the way, are you doing any more fund raising for Kellsey's home coming?
Yes!!! We will be doing a giveaway for an iPod touch very soon, so be watching for that! I just haven't gotten the specs written up yet! :)

is it a surprise that koala and kangaroo were your answers?? i counted to see if they were seven letters ;)
LOL can I help it if the two most common things to Australia HAPPEN to begin with K?!

AWWW, we were just getting into the pics and they were over...more please! She's gorgeous!!!
I know, that's all I have! LOL I'm sure I'll get more as the weeks progress! :)

Can't wait to hear all about how the lessons go. Is this for the whole school year or just until the holidays??
I believe they go through April or maybe May? The recital is in the Spring, that's all I know!

That really made me smile which I definitely needed as I'm sitting in my pharmacy law class (booo!) which dance studio are u taking her to?
She is going to Lana's Dance Center down on the 41A Bypass. :)

I wonder if giving her a glucose tablet in the morning would help keep her sugar up but keep her stomach empty??
That's a good idea, I will mention it to the people at the PATCH appointment we go to.

What does her endocrinologist say about managing her hypoglycemia for surgery?
I believe they're going to be part of the appointment on Monday. Her endo doc left so I'm not even sure who her new one is! We haven't met him yet!

You can take your dress with you for your SDA and court appt. too. That gets you at least 2 more wears out of it! (Just tryin' to help, i don't even own a dress!)
LOL This is very true! I probably will! So get used to the dress, you all will be seeing it A LOT! (But at least I'll get my money's worth! HA!)

Wow, and did he put them in the time out spot and everything? I hope those "bo-bots" learned their lesson ;).
Yep! That was ALL him! Silly kid!

But, doesn't Kameron play soccer? I know he used to play soccer.
Nope! He stopped playing about a year and a half ago... lost interest I guess. He's not doing anything right now. I really wish he would. He's taking swim lessons but those will be ending as soon as the weather gets cold. We tried to talk him into dance. One of his good friends is in a boys hip hop dance class at the same studio Kennedy dances at but he wouldn't go for that either. We just need to find the "thing" for him.

Its tough watching kids change sports - especially when you have invested so much time and resources into one. But, doing more than one sport is never a bad thing either - it just makes for a more well rounded child.
Well, we COULD but as it is, Kennedy has therapy on Monday & Wednesdays then Tap & Ballet on Thursdays and Kassidy has swimming on Tuesdays and Fridays, then Kass, Kam and Kenn have swimming lessons on Sunday afternoons soooo, I'm not sure where we'd fit soccer practice in there too! LOL Plus you know, there's that pesky homework thing! HA!

Call me crazy but I have been on a mission for this. I use aussie (because my DH loves the smell of it). I do not use this hair spray but I use there other hair spray. I found this one at our commissary a couple a days ago. They had a bunch. See if your commissary has it and if not I am more than glad to pick it up and send to you. Ask the commissary if they can order it because we are at redstone which is small and they have it.
Ahh thanks!!! I actually found it at Target... for now! LOL Let's see how long they keep it in stock now! I bought like 5 cans just in case! I also decided to try their mousse and I think I like that too, I haven't fully decided yet. LOL

OH I thought of something. Remember you said you like a hairspray that HOLDS? And you couldn't find the one you liked! There's always Aquanet! Ha! Big hair time!
LOL! I used to use that in middle school when I had what my grandma called the "peacock bangs"! LOL

More prayers for Baby Annette

Maxey Family

In January, I told you about baby Annette Maxey. She is currently battling AT/RT, one of the most aggressive, nasty brain tumors out there. I shared her story with you, and I asked you to pray.

A few weeks ago I updated you on Annette and reminded you to pray as she was in the PICU and things weren't looking good. Since then she got a little better and was able to move back "home" to the hemonc floor. I smiled when her mom, Natalie, said the hemonc floor felt like home. I remember that feeling, being surrounded by the nurses and sounds and things that you're used to, that you've grown comfortable with, it's a sense of security to be there.

Today, Annette Maxey is getting ready to go home on hospice. She has fought hard. She is tired. And her parents, Kirk and Natalie had some extremely hard decisions to make. Please keep Annette, her brother Grant, and her parents, Kirk, and Natalie, in your prayers. Soon Annette will be joining her big sister Madeline in Heaven, who also battled a brain tumor, and I can't even imagine what the family is feeling right now. Cancer sucks.

Saturday, August 22, 2009

Peanut Butter Jelly Time!

LOL Frank loves this song! Good to see our troops keeping a sense of humor! :)

Thanks Nadine!

Soccer Mom

There are several terms I use to describe myself. If you asked me who I am, without hesitation I would tell you: I am a Christian. I am an Army wife. I am the mother of a child with Down syndrome. I am a mother of a child who fought cancer. I am a mother who is about to adopt. I am a soccer mom. I am much more than this, of course, but these are a few of the things that are woven into ever fiber of my being, because I don't only speak them, I live them. Every one of them. Almost every day. Until now.

As Fall soccer season has been getting closer, Kassidy has been weighing her options... her deep love for soccer vs. her new love deep love for swimming. I sat back and watched her, trying to help her weigh the pros and cons of each and not influence her decision one way or the other. I offered advice when she asked and reminded her that while she did have to pick ONE, the choice was ultimately hers. She has been playing with the same soccer team since she was five years old!

Kassidy in 2004...





Ultimately, her love of swimming won out, which left me with the realization that in a few weeks when everyone is heading to the soccer fields every Saturday morning, we'll be sleeping in. We won't be buying new cleats or shin guards this year, and I won't be seeing my other soccer mom friends at the practices and games. And I have to remove "soccer mom" from my repertoire. The smell of fresh cut grass and nachos will be replaced by the smell of chlorine and the sound of splashing water... and I'm sure I will learn to love being a "swimming mom" just as much as I loved being a "soccer mom". It's just going to take some getting used to! *sigh* Goodbye MCSA! We'll miss you!

Friday, August 21, 2009

Ear tubes

Next Friday, Kennedy will be going in for surgery to get more ear tubes put in. This will be her 3rd set. She doesn't get ear infections, but because her last hearing test showed mild hearing loss in both sides, they are hoping this will help. They will also do an ABR (hearing test) while she is under. This is the most definitive of hearing tests which will tell us exactly where her hearing stands without it being hindered by any fluid that may be in there.

Because of her hypoglycemia issues, we will go in on Monday to meet with the Anesthesiologists and talk to them about what to do pre-op. She can't go without eating too long... she also has slow gastric motility which means that it takes a LONG time for food to empty from her stomach so before her hypoglycemia diagnosis they always liked her to be NPO (nothing by mouth) for at least 12 hours prior to surgery to prevent risk of aspiration. Not too sure what they're going to do to balance out the two.

Anyway, I'm glad to finally have a date to get these tubes in and get this over with! We are praying this IS indeed the cause of her hearing loss and she won't need hearing aides! I'll of course be updating on Friday!

My little ballerina!

Kennedy had her first ballet and tap class last night! She ended up being the only one in her class! They said they will give it a couple weeks and if more kids don't show up they will change her to a different class on a different night, but I think it actually worked out GREAT for her first class - she got a private lesson!

Kennedy did wonderful!!! She loved her teacher, Miss Katie, and she was SO excited to be a ballerina! They did ballet for 30 minutes. Kennedy followed every direction and had a great time! Then she came out and Miss Katie told her to put on her tap shoes. Kennedy didn't want to take her ballet shoes off, but everyone told her she would LOVE her tap shoes once she saw what they did. SO she got them on and walked over to the dance room and once she heard the tap tap tap she said, "OH MY JOSH!" LOL It was SO funny! She had a blast during tap too! She did so well!

When tap was over I told her it was time to put her regular shoes back on and she said, "No mommy! These MATCH!" haha So we left the tap shoes on! I think she's going to love this class! I don't have any pictures of her during class, parents aren't allowed in (we get to watch the class on a TV screen though) but here are some from right before!


Thursday, August 20, 2009

Newest diaper craze!

I'm totally going to have to buy these! It's all about going green, right?!

(Thanks Leah!)

Just Beyond the Clouds

School is back in which means I get reading time again! YAY! I just finished Just Beyond the Clouds by Karen Kingsbury. This book is REALLY good. Karen always makes me cry, but this one especially touched me because it was all about Elle Dalton who started a center for young adults with Down syndrome. She happened to be the sister of one of these young women, Daisy, who is bright and funny and working hard toward her "goal day" which means that she can live away from home. Each of the people in the center are working towards the same goal. Karen does a great job capturing their different personalities and quirks and things that people with Down syndrome might struggle with, things that come so easily to the rest of us.

Daisy happens to have a special relationship with a young man at the center named Carl Joseph, who's brother, Cody doesn't think the center is a good idea at all. He thinks that people with Down syndrome need to be at home and sheltered where they can be protected... he has a lot to learn, and who better to teach him than Elle? And maybe the special group of people at the center! I won't say too much more as I don't want to ruin it, but it's REALLY a good book. At the end Elle says this:
"Down syndrome is nothing more than a layer of clouds, really. Clouds that cover up a very bright sunshine." Couldn't have said it better myself!

If you run across this book, be sure to grab it and fall in love with this special group of people! I also just learned this is a sequel to a book called A Thousand Tomorrows. I may have to read that next!