Wednesday, October 26, 2005

Life with My Special Ks

Life can be so crazy sometimes! As I sit here trying to unwind from another long day... one child passed out on the living room floor and two more dreaming away in their beds, I can't help but revel in just a few minutes of quiet time for mom.

For now our lives consist of therapy. Four days a week of OT, PT, EI, PDI, Center Based, Home based, and oh yes, next month we throw in ST... for so few letters, acronyms can be so... tiring! There are medications to be given and doctors to see; then there's the question of will the doctors treat her? Will they listen to me, or brush me off? Will I leave happy or angry, or crying? And will the tears be from frustration, or sadness at a new diagnosis, a new problem, a new surgery? How serious is this? What are the risks? The side effects? What if we wait too long? Could she die? OK I'll try not to worry... I'll try not to...

We see a lot of "gists"... CardioloGIST, UroloGIST, GastroenteroloGIST, OtolaryngoloGIST, OphthamoloGIST and countless others. We also have a lot of "justs"... It's JUST a virus, JUST an infection, let's JUST watch it for a while... it's JUST not that important. She's my baby, nothing in the world could be more important.

Then I get home... there are meals to prepare (sadly, I let McDonald's do that job for me often), and stories to read and hugs to give, games to play and toys to fix, backpacks to pack, fights to break up and the occasional time out to enforce. There are clothes to wash and dishes to do and cleaning that sometimes seems to take the back burner. There's soccer practice and soccer games, field trips to go to and a teacher I promised to help. There are packages to mail and bills to pay, support groups to plan and phone calls to make, emails to answer and still, the occasional time out to enforce. This all has to be worked in around the doctors... they don't want to fit into our lives, we have to fit into theirs. Somewhere in the middle I find time to sit, to pray, to reflect and ask God to forgive me for not always putting Him first.

Then the phone rings. I snatch it up ready to answer and quickly move on my way... it's from Iraq. Oh yes, I remember you, my husband... YOU need me too, right? I can talk for a second while I get hair washed and teeth brushed and diapers changed and... You're tired? Yes, yes, me too, but it's not midnight here, I have the whole day ahead of me. The kids are still fine, the doctors are still jerks, and you'll never believe what the baby did today! I miss you too, and so do the kids... You have to go? Already? OK... we love you too...

Time for school... do they have clean clothes? Yes... as long as it's warm out. Where are their shoes, their backpacks, her hair things? It all has to match, you know. Did I sign her slip? No... I'll have to find it later... darn, no cash for lunch, I'll have to write a check. Breakfast? Didn't you just eat? OK grab some cereal and let's go. Oh! Her medicine, can't forget that. It's trash day and the barrel is not at the curb... I guess one more week won't hurt, will it?

Just when I think I can't take anymore and I just want to lie down and cry, I get a pudgy hand wrapped around my neck for a hug (and I usually get licked in the process). Or I get a small voice that says "I missed you, Mommy!" after a long day with the doctors, or an even sweeter "I love you" at bedtime. Or I'll get that phone call or e-mail just to say "I'm thinking about you, I love you, and you're a great mommy!" and I think about the awesome family I've been blessed with. That's when I remember this is not about ME.

This is about my daughter, my oh so dramatic princess who thinks that 25 days is WAY too long to wait for her birthday. This is about my son, my handsome, feisty 3 year old who is ALL boy and has a twinkle in his eye that lets you know he's doing something I'm not gonna like. This is about my baby; my sweet, precious angel whom life seems to revolve around for now, one smile from her can light up the heavens. This is about my husband, who's off fighting in a war to keep all our families safe, but who's heart is here with his wife and kids. This is about my God, who is always watching, always there to keep things together, and always there to give me a push when I need it. Will life always be this hectic? Maybe... but as long as I keep getting the hugs, the slobbery kisses, the sleepy "I love yous" and the midnight phone calls, I wouldn't change a thing.

Thursday, October 13, 2005

Kennedy update...

OK So Kennedy went to the urologist on Monday and had her VCUG done... that was so NOT fun! I hope we never have to do it again! LOL

She does not have kidney reflux, which is good! The doctor said the blockage "appears" to be getting smaller (also good). So he said to keep her on the antibiotics for another month and he'll do another ultrasound and he is HOPING the blockage will be gone. Her urine sample was clear of infection too.

Now, Kennedy decided she needed something new and weird to throw into the mix, and she now has an infected lymph node on her upper thigh. Her urologist told me what it was and told me to take her to her ped and get it drained. On Wednesday morning it popped and some of the infection came out... I took her in later that day (they had no openings on Tuesday) @@ and her ped said no one in the office knows HOW to drain something like that (imagine that lol) so she'd have to call a surgeon. He came down to look at it and said if he DID drain it he'd have to put her under anesthesia... still not real clear on WHY! LOL So he decided to put her on a stronger antibiotic and see if that clears it up. It does seem to be doing better today.

Here's the catch... her ped said that getting infected lymph nodes is not good, and this is her second one in less than two months (Frank and I thought the first one was an infected bug bite and we popped it and it went away on it's own). She said if Kennedy gets another one they'll have to start running tests to figure out why. *sigh* SO we're praying she won't get another one! It shocks me that she can get ANY infection with all the meds she's been on!

We are still under strict instructions to being her back to the doctor/ER whatever if her temp goes above 100.4 so they can check her urine... she had a temp of 100.2 earlier tonight but it went away, thank goodness!

OH and she's still having major constipation problems so she was referred back to GI again... this makes me kinda sad... it was the ONE doctor we got to cross off her list! They are worried about adhesions from her surgery though. Such is life I guess!

OK that's ALL for now! In the next two weeks we go to get her ears and hand checked and maybe back to GI, I have to call tomorrow!

Saturday, October 1, 2005

Kennedy update and our Buddy Walk!

I'm sorry it has been so long since my last update! Things have just been nonstop over here. Kennedy was finally admitted to the hospital the day after my journal ended.

Turns out she had a really, really bad bladder infection. In all the fighting I did to get her seen no one EVER did a urinalaysis. (DUH) She also has a blockage in her right kidney... they aren't sure WHAT the blockage is because they wouldn't do an MRI (Appearantly the MRI machine is reserved for active duty Soldiers, not us lowly civilians @@).

The blockage may require surgery, and it may not, she may have kidney reflux and she may not... she may have kidney damage, and she may not... everything's up in the air until she get tested at Vanderbilt.

She is on antibiotics right now until they decide what to do for her. Fortunately she has had no more fevers! She went back to her ped on Thursday morning for a repeat urinalysis and I didn't hear anything so I'm assuming it came back clear.

The day after we got out of the hospital I went to speak to the command sergeant major about the atrocious lack of care Kennedy has received there. I turned in the journal and he promised he would take care of it. They are investigating right now and he has been calling every few days to check up on Kennedy. All of the sudden people are VERY willing to give me what I want around there... imagine that!

I called Vanderbilt myself and made Kennedy an appointment with the pediatric urologist. I wasn't going to wait on Blanchfield to do it, and then the Command Sergeant Major called to check on Kennedy and I told him about her appointment at Vandy and he said he would push through the referral in time for the appointment, and guess what? He did! (Imagine that!).

Kennedy's appointment was on Thursday in the pediatric urology clinic at Vandy. She saw the head of the department (Dr. Brock) and I really liked him! He promised to get her all figured out and patched up :o). He had to redo her ultrasound and he saw the blockage in there, so the next step is to do a test for Kidney reflux. We go back on October 10th for that. Until then she stays on the antibiotics and then she will get a shot of antibiotics right before the test. He said it's not the most comfortable test, so pray it is not too hard on her. The results will tell us the next step for her. He also said he wants Kennedy to be seen by a cardiologist at Vanderbilt instead of Blanchfield so they can talk about Kennedy and decide on a plan for her. We'll be looking into that next week.

On the way home, I got a call from Blanchfield and they were just checking to see how Kennedy's appointment went. They also said her name is on a special list in the ER there so when we take her in for ANY reason, no matter what time it is, they will call in a pediatrician to look at her. She never has to see an ER doc at that hospital again :o). YAY! I got a call from the Command Sergeant Major again today just checking on her... it's nice she's getting taken care of NOW, but it should have been this way in the first place!

I am also going to have to take Kennedy to a pediatric ophthamologist. Her left eye has started turning in some. I am told this can be fixed with an eye patch (over her good eye so the weak one has to work harder) or glasses (which she'd NEVER keep on lol) or surgery... I'm tempted to tell them to knock her out and fix her vascular ring, her eye, her kidney and put in her ear tubes all in one shot! LOL Somehow I doubt they'd do that!

Anyway, today was Kennedy's first buddy walk, it was so much fun!
First I would like to thank her sponsers!!

Jackie Perkins (aka Kennedy's grandma)
Jack and Barbara Perkins (aka Kennedy's nonnie and bompie [great grandparents])
Dave and Mary Tobey
Brian and Lisa Wulf
Ed and Lynn Worley
Tim and Ellen McCollum

Your gifts are coming in the mail next week, watch for them! :o)

Also, thank you to Lisa and Anna Turner, Missy Honea and Paulette and Casey Krebs for walking with us!

Kennedy was able to donate almost $500 this year and the whole Nashville Buddy walk raised over $20,000 to help support Down syndrome! Next year we are shooting to have the biggest team at the buddy walk! Kennedy's Kompadres! (The largest team this year had over 70 members, so we have some planning to do!)

I didn't get pictures during the actual walk because, well, I was chatting and pushing the stroller and concentrating on how stinking hot it was outside, LOL but mostly I was looking around at the beautiful kids! :o) At the finish line Kennedy received her own little trophy and Kassidy and Kameron received participation ribbons :o). Kennedy thinks everything must be thrown these days so the trophy will be safely stored on our mantle next to Kass' soccer trophies for now ;o).

After the walk we had a picnic at the park with friends I met at Vanderbilt. Their son William is SO cute!! He's crawling all over the place... maybe he'll give Kennedy lessons! :o) We also heard a great Christian band play... of course I don't remember the guy's name but I bought one of his cds :o). Now we are home, trying to cool off and relax before dinner :o). Anyway, here's some pics of our day... I didn't get a picture of our team! UGH! Next year for sure! LOL
Bring it on bird!

Kassidy, the dog, and a cute little boy! ;)

Kassidy and the bear... Kam was too busy running around.

MMMM Lunch!

My handsome boy Kameron! :)

The 3 KJ Kids... Kennedy was clapping! :)

Is there something on my chin?

Kennedy blowing kisses... slobbery kisses! LOL

Hey William, whatcha got there?

You're not gonna share? I'm so sad!

FINE! I didn't want it anyway!

Next time I have a snack, I'm not sharing either!

Tuckered out after a long, hot day!

Look at my cool trophy!