Saturday, December 10, 2005

More surgery for Kennedy and Fall pictures!

On Wednesday Kennedy had ear surgery. I forgot to tell almost everyone apparently, so my apologies! We've been so busy these days we don't know which way is up sometimes!

She went in to have compacted ear wax cleaned out and possibly have tubes in. She passed her hearing test in the booth and she had never had an ear infection, so they weren't too sure about tubes. They said they would decide once they get into her ear and looked around. They also decided to do a sedated hearing test while she was out so she was under a little over an hour.

They cleaned out her compacted ear wax and found she has an ear infection. (Her first one!) I started to get mad at her ped for not catching it but the ENT said that he looks at ears all day and HE didn't even see it until they got into the ear drum, so there's NO way a ped would have caught it. OK I'll buy that! He went ahead and put tubes in to help with draining.

He said that her hearing is perfect, which is awesome! He also said he has never seen a kid with Ds who's ears looked so good :o). He was amazed. Nice to have someone amazed over her for a GOOD medical reason! LOL

She was in quite a bit of pain when she woke up, so they gave her a narcotic which made her a little loopy for a bit, but an hour later she was wide awake and back to her old self!

Anyway, one more thing under Kenn's belt. We go in next Thursday so they can clean out her tear ducts in her eyes and then hopefully we can stay away from anesthesia for awhile! They are also running a blood panel on her next week. She's still really anemic and they want to see if they can find the reason.

Thanks for check in, as always! Here are some of Kennedy's Fall pictures that I promised to get out and never did! LOL I also have the professional pics, just waiting on one of them to come back and I'll send those out too.
What is this??

I think I like it!

I can hold it...

This is amazing!

I need to think about this...

Let me show you my tongue!

OK Ready???

GO!!!

I found another one!

Hey, it landed on me!!

Let's see what happens when I bang them together...

MMMM Yummy!

This has been an interesting experience!

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!

Sunday, September 18, 2005

Sick little girl...

WOW we have had a crazy couple weeks here! Frank left for Iraq on September 6th. It was hard to say goodbye. He is currently in Kuwait and will be moving into Iraq soon. Then his year deployment will officially start. The kids miss daddy a lot, but they have been able to talk to him on the phone a few times, so that has helped.

Two days after Frank left, Kennedy got really really sick. Since then I have been battling with doctors to figure out what is going on with her. Unfortunately we have been given the run around and she has not received adequate care. I have put together a journal to take to the patient representative at our hospital, so I thought I would post it here as well so you all can catch up. I tried to stick to the facts and keep emotions out of it for this purpose, but it has been a scary and exhausting ordeal. Please pray for my Kennedy that they figure out what is going on very soon! Thanks!
Renee

Date: Thursday, September 8, 2005
Kennedy gets a cold... her 3rd one in 6 weeks, I make an appointment for her at the Young Eagles Clinic with Ms. Morse on Friday.

Date: Friday, September 9, 2005
Kennedy wakes up gasping for air and has a temp over 105. I give her Motrin.
At the clinic she registers a temp of 103.
Ms. Morse says Kennedy's lungs are very raspy. She sends us for a chest x-ray to check for pneumonia. The x-ray shows pneumonia and reactive airway disease. She prescribes Omnicef and orders a nebulizer to be delivered to our home. She also prescribes Albuterol and Pulmicort. She ran some blood work and they did one nebulizer treatment in the clinic before we left. That night I give Kennedy her Omnicef. Motrin and Tylenol have been alternated throughout the day.

Date: Saturday, September 10, 2005
I give Kennedy her Omnicef and then a breathing treatment with Albuterol and saline. She starts shaking violently and her hands and feet turn blue. Her fever sores to 105.4. Motrin is given which she immediately throws up. She shakes for about 25 minutes and her fever goes down and she sleeps for over 2 hours. When she wakes up, her temp is over 104. I take her into the ER at BACH at the advice of a pharmacist. We get into triage and her temp is down to 103. NO pulse ox was taken. After waiting for almost 3 hours, and me going out to ask for Motrin twice, we see Dr. Blanton and I voice my concerns about Kennedy turning blue and say this cannot be normal. He says turning blue is part of the virus and basically brushes us off. He also states that her pulse ox was 100 percent and does not believe me when I say her pulse ox was never taken. The nurse comes in with 1½ teaspoons of Motrin. I tell her it is too much for Kennedy and she argues with me and gives it to her anyway. Her normal dose is ½ teaspoon. I inform the doctor of this and he says "Worst case scenario she will get a bad tummy ache." They do a nebulizer treatment with Albuterol on Kennedy and nothing happens. We are sent home with no help. Kennedy gets her second dose of Omnicef when we arrive home.

Date: Sunday, September 11, 2005
Kennedy is having a hard time breathing again but I am scared to give her the Albuterol, thinking she is having a reaction to it. I give her the Omnicef and then give her a breathing treatment with saline only. She tolerates this well. A few hours later her fever spikes to 104, she starts shaking and her hands and feet turn blue. I give her Motrin and watch her closely throughout the night, knowing the ER will not help me. Her fever escalated and dropped throughout the night and Tylenol and Motrin were alternated and she received her nighttime dose of Omnicef.

Date: Monday, September 12, 2005
Kennedy wakes up and gets her morning dose of Omnicef.
We have an appointment at the Young Eagles Clinic with Doctor Min. I voice my concerns about Kennedy turning blue and her spiking temps. He has no idea what is going on, so he chalks it up to the virus. Her lungs sound 100 percent clear. I tell him we will be seeing her cardiologist on Thursday and he says that is a good idea. Kennedy has no fevers or blueness today. Before bed she receives another dose of Omnicef.

Date: Tuesday, September 13, 2005
No doctor's appointments today. Kennedy spikes no fevers, and everything is fine. She receives her morning and evening doses of Omnicef.

Date: Wednesday, September 14, 2005
No doctor's appointments today. At 11:00 her TIPS advisor comes for our appointment. Kennedy starts crying uncontrollably. She feels warm so I go to get her thermometer. Her advisor holds Kennedy and she says, "She is getting really warm, really warm, ok she is hot, really hot!" I take her temp and it is up over 105. This is in a matter of 5 minutes. Her hands and feet turn blue and she is shaking uncontrollably. I give her Motrin, which she throws up. She falls asleep on my tummy, still shaking. We observe her for a while and her temp goes away, so we decide to watch her and not take her into the ER. I keep my son home from school so I do not have to put Kennedy in the back seat where I cannot see her. Kennedy's advisor comments that she has never seen ANYTHING like this and she is scared something is really wrong. Kennedy receives both her morning and evening doses of Omnicef.

Date: Thursday, September 15, 2005
In the middle of the night Kennedy rolls over next to me and she is hot, really hot. I jump up and turn on the light and she is blue again. I take her temp and it is over 103. She is very sound asleep but her breathing is quick and shallow. I watch her closely and about 20 minutes later her fever goes down and her hands and feet slowly go back to pink.
We go see Kennedy's cardiologist. He does an echocardiogram and says that her VSD is closed. He checks on her Vascular Ring and says it is not hurting her or constricting her airway right now. He says in the future she will have to have an operation, but she is ok for now. I, once again, voice my concerns about Kennedy turning blue and her spiking temps. He says this is not anything to do with her heart. He thinks it may be something hormonal and recommends we see an endocrinologist right away. Her thyroid screens have always come back normal, but he says the endocrinologist can do a deeper screen and maybe pick up something the other tests missed. He also re-emphasizes the importance of RSV shots this year. He looks at her blood work from September 9th and says she definitely does/did have pneumonia, and he also says she is VERY anemic. No one in the Young Eagles clinic has ever told me she was anemic. He looks at her blood work from June and says she was anemic then too and I have to get her on Iron right away. He tells me to ask for the endocrinologist referral when I see the pediatrician next.
Later in the afternoon Kennedy spikes another fever, but her hands and feet do not turn blue this time. Her fever drops about 25 minutes later. Kennedy receives both doses of her Omnicef.

Date: Friday, September 16, 2005
Captain Rowe sees Kennedy in the Young Eagles clinic. This is the first time she has seen Kennedy, and this appointment is supposed to be her 15-month check up (on her 16 month birthday). Kennedy's fever is down for the moment and she is happy and playing. I again voice my concerns that I think something is really wrong with Kennedy, and that turning blue cannot be normal. Captain Rowe says the spiking temps and her blue hands and feet are most likely a side effect of her virus and she does not seem too concerned. I tell her what the Cardiologist says and she reluctantly agrees to put in a referral for the Endocrinologist but says it will take up to 3 months before she will be seen. I ask her to redo her blood work from last week and she says it is not really necessary. I ask her to do it anyway so she does a CBC but will not do a blood culture since she is on antibiotics. She makes us an appointment to come back on Monday so she can follow up. We decide it is best to hold off on Kennedy's vaccinations until she is 100 percent well. Kennedy's Omnicef is gone.

Date: Saturday, September 17, 2005
Around 4am Kennedy wakes up screaming. I reach over to pat her back to sleep and she is burning up. I jump up, grab the thermometer and her temp is 105.3. Her hands and feet are blue again. I give her Motrin, which she immediately throws up. I take her temp again and it's 106.5. I take her and put her in a lukewarm bath, which brings her temp down a little. She falls back to sleep on my stomach. As soon as daylight hits, I start making phone calls and arrange for my older children to be taken care of so I can take Kennedy to the ER. A neighbor comes over to help me get the kids ready. She holds Kennedy and says that, "Kennedy is so, so hot, Renee!" Kennedy cannot even lift her own head. I give Kennedy another dose of Motrin and brush my hair and we are off to the ER in our pajamas leaving my neighbor to dress my other children. I take her to the ER at Gateway this time, which is 10 minutes from my house. Kennedy's temp is down to 102 when she sees the triage nurse. I burst into tears and tell her that Kennedy is SO sick, but every time I see a doctor she seems to get better. The nurse assures me that 102 is NOT better. An hour or so later, we get to the back and see a doctor. Again I voice my concerns about Kennedy's spiking temps and her hands and feet turning blue. He does a chest x-ray, a CBC, a blood culture and blood chemistry. He agrees that something weird is going on with Kennedy and she needs to be admitted and observed so they can run tests and figure this out. I agree wholeheartedly and feel thankful that someone is finally listening to me. He goes to start the paperwork and comes back to tell me that our insurance will not cover Kennedy being admitted at this hospital. She will have to go back to BACH. He calls the head doctor there, a doctor Sherwood… or Sherman, and he says that since Kennedy's fever is down right now he has no medical reason to admit her and if we show up we will be turned away. The doctor at Gateway apologizes, but his hands are tied unless we can pay for the hospital bill. He recommends that the next time her fever spikes I get her to BACH right away, no matter what the time, so maybe they can see what is happening and finally run tests. Once again, we are sent home with no help.

Sunday, September 18, 2005
Kennedy does great all day! She has no spiking temps and plays and eats normally. Around 7:30pm she starts crying uncontrollably. By 8:00 she is shaking and her temp is starting to rise. I get my other kids ready and we get out of the house. On the doctor's advice from Gateway I do not give Kennedy Motrin. Right before we leave her temp is 102.9. We arrive at the ER at BACH at 8:45pm. Her temp is 104.7. The nurse asks me when I last gave her medicine and I tell her the truth. She then yells at me for depriving my child of medicine to prove a point. I try to explain that no one has believed me all week long and she tells me she does not believe that. She gives Kennedy ¾ teaspoon of Tylenol. Kennedy throws up her Tylenol 15 minutes later. After another encounter with a very rude PA we are finally given a bed and see Phil Volkert. I tell him how scared I am that Kennedy is spiking these high temps after 11 days. He is caring and truly wants to get to the bottom of why Kennedy is doing this. He decides to pull her lab results from Gateway so he does not have to stick her again. Her chest x-ray and CBC from Gateway are normal, but the blood culture and blood chemistry are not back yet. A nurse comes in to take Kennedy's temperature again. It is 101.5. She rudely tells me to take Kennedy’s shirt off. I smile and say, "At least her temp is down a little, right?" She again rudely insists I still need to take her shirt off. I agree politely and she stomps out of the room. I am then glared at by a group of nurses who are obviously whispering about me. Not long after, Kennedy's fever breaks. She sits up and plays and acts like the happy baby she is. Mr. Volkert says that he cannot admit Kennedy because she looks so good now, even though he saw how badly she looked just 30 minutes before. He tells me to keep Kennedy's doctor appointment in the Young Eagle Clinic with Captain Rowe in the morning and demand that she is seen ASAP with the Endocrinologist. He says if she will not do it to speak to Dr. Min. Again, we are sent home.
Just before 5am Kennedy wakes screaming. I take her temp and it is 107.1. I give her Motrin, which she immediately throws up. I wipe her down with a cool cloth and her temp finally drops to 104.3. We are waiting for it to break now.

Friday, September 2, 2005

This N That...

Kennedy and I had a great time in California! I learned so much at the conference and got the chance to see friends and family I hadn't seen in over a year. We also got to go to Disneyland! :) It was good to get home though!

Kennedy is doing so, so well! She is up to 16lbs, 4oz as of two weeks ago. We went to see her GI and he has released her from his care! YAY! One more doctor down. :)

She has really taken off developmentally in the last month or so, She's been sitting on her own since she was 11 months, but now she can finally get into a sitting position from laying down. She's so proud of herself too! LOL She'll sit up, clap and say "yay!!!" Then she'll dive back down and do it all over again lol. It's so funny! The other day I was trying to do her hair and she kept trying to lay down and finally I said "Kennedy SIT up!" And she did! I'm still thinking that was a fluke though lol.

Besides saying "yay", she says "hi", she'll say "bye bye bye" (always 3 lol) and wave. She says and signs "all done" which really sounds like "ah dah". She does that on her own too with no prompting from me. She was sitting in the bath the other day and I poured water over her head and she immediately signed and said "ah dah! Ah dah!" LOL She can sign "more", but she has to be prompted still for that one. She shakes her head no, and she does this appropriately too, except I think she does it WAY too often! LOL! Stubborn little thing .

She's not crawling yet and still HATES to be put in the prone position, but she's scooting all over the carpet on her butt, I think she almost goes faster that way than she does rolling! LOL She's finally enjoying her jumper and putting weight on her legs! She goes crazy jumping in that thing now! I never thought that would happen! She loves to dance! Her favorite show is Rock Star NXS. My little rocker chick lol. She has rythm too! (She got that from Daddy for sure! LOL)

She has quite the onery streak in her too! LOL Her therapist was trying to get her to put blocks into a bucket last week and she wanted to hang onto those blocks! So she would kind of force them out of Kennedy's hand into the bucket and Kenn would yell at her and knock the whole bucket over! It was hilarious! (Though I was trying not to laugh! LOL)

OK I think that's it! I'm just so proud of her, she is doing things so fast right now! I still keep telling her she needs to crawl by the time she's 18 months old lol. She has till November 16th, we'll see!

Kassidy and Kameron started school a couple weeks ago. Kassidy is loving Kindergarten and making new friends quickly. I got a note from her teacher today saying that she is being a "mother hen" to the other kids (should I read that as "bossy"? LOL) I don't know where she could get THAT from! ;)

A couple funny Kassidy stories: I picked Kassidy up from school today and as we were walking to the car she suddenly got REALLY excited and said "Mommy you know what? There's this girl in my class named Sarobbie, and we were talking on the play ground today and I asked her if she had Down syndrome and she said YES!"
I said "Honey, I don't think Sarobbie knows what Down syndrome is, because she doesn't have it." LOL But Kassidy insisted that YES she does have Down syndrome because she said so! LOL I was doing everything in my power not to bust up laughing!

Then, tonight I was doing her hair (we went to get family pics done) and we were talking about when she gets married and Frank walked in and said "you're never getting married!" Kassidy said "DADDY, I HAVE to get married!" Frank said "Why?" She said "because, that's just what women do!" LOL
She is such a crack up!

Kameron has the same teacher and aides that he did last year and he is loving it! They told me they can't believe how far he has come this summer! He's turned into a real chatterbox :). He keeps us laughing constantly!

Like I said, pics coming soon, I hope!

I am busy trying to get ready for our buddy walk (be looking for an email soon) and we are starting our support group back up for the Fall. Actually we are starting TWO support groups. Our Up With Downs will resume from the Spring and we are starting a new group called Special Parents for Special Kids for parents with kids with ANY special need. There is a need for a group like this in our town, so I was approached to start one and I did! I just hope we have a good turn out!

Frank is getting ready to head back to Iraq very very soon. I can't give exact dates due to OSPEC regulations, but I'll update as soon as he's gone. Please be praying for his safety and the safety of his whole battalion.

Now some sad news, in the last 2 weeks, two families on our Down syndrome message boards have lost their babies :(. Kylee Rose was 4 months old and Reese Adam was 2 weeks old. Please keep Kylee and Reese's families in your prayers during this difficult time. My heart just breaks for them. You can visit their memorial pages by clicking on their names above.

Thank you all for checking in on Kennedy's page. I really am going to try to keep it better updated.

Wednesday, July 20, 2005

Long overdue update!

Well I figured this site is long overdue for an update! Our family has been busy with vacation! We explored Tennessee and did all the touristy stuff.

We went to Eastern TN on the NC border and went to Gatlinburg and Dollywood. The kids loved it! Kass and Kam are still talking about all the rides they went on. Then we came home for a day and took off for Memphis (right on the AR border). We met with friends there from one of my message boards and then stayed with another friend who was our Chaplin when Frank and I were in college. It was great to spend time with him, though I have to say West TN is NOT very pretty! We went to Graceland but the tour was almost two hours and over $50 for our family so we decided against it. I've heard we haven't missed much!

After Memphis we came home for a couple days and then took off to Chattanooga. We love it there! We spent lots of time in the water and we also went on a boat ride, went to the aquarium (we went to one in Gatlinburg too) and we went to the Children's museum. It was all so fun! We were there the weekend of the 4th and the fireworks display was kind of disappointing, but oh well! Can't have it all, right? :)

On July 12th Kassidy and Kameron both had tubed put in their ears. We're hoping this is the end of constant ear infections for both of them! They both did really well and it was over so quick! Thank goodness! The hospital gown had clowns on it which freaked Kam out, but beyond that it was a breeze. Kam woke up hungry and ready to run. Kass woke up a little weepy and played the drama card the rest of the day... oh she's so much like me it's scary!

Kennedy is doing GREAT! She weighs 14 lbs 5 oz now and is starting to fit in some of her 3-6 month clothing finally! She turned 14 months old last Saturday... I can't believe it!

On our vacation she learned how to clap her hands and say "YAY!" She is her biggest fan I think! ;) She is also Army crawling all over the place and if you ask her where her head is, she'll point to it! She's one smart cookie! :)

This Saturday Kennedy gets to go on her first plane ride!!! She and I are flying to California for a Down syndrome conference in Anaheim. I can't wait!! We'll be there for two weeks so we have time to see all our friends (most of whom have not met Kennedy yet) and eat all the food I've been missing!

Frank has to work so he won't be able to go, and Kassidy and Kameron will be staying with my mom in Florida. I'm going to miss them!! It'll be a nice break for me and them though. After Frank deploys in September, it'll be just me and the kids for a year... they're going to get tired of me I think! ;)

Kennedy and I will return on August 5th and school for Kass and Kam starts on August 9th! It's so early! I can't believe Kassidy is going to Kindergarten! She's so excited!

Anyway, there's our update! When we get back I will update again!

Tuesday, June 14, 2005

Lots of appointments!

Well, we're right smack in the middle of Kennedy's slew of doctors appointments! I'll be glad when we are done for awhile!

We saw ENT to get her hearing checked and they found a lot of fluid behind her left ear. They couldn't really tell how her hearing was because her ear canals are so tiny, so they are recommending tubes, even though she's never had an ear infection. They said most likely she'll end up having to get them anyway. *sigh* We're not sure when she'll get those done, she has an appointment to see a different ENT at Vanderbilt on August 1st.

Last Monday we saw her surgeon in Nashville. He was VERY pleased with her weight gain and said we no longer have to follow up with him! YAY!! One less doctor in the equation! They made us promise to come visit often though! :)

Last Wednesday we saw her new developmental pediatrician on Post. Her old one retired. I really like him! He was a little concerned about her vascular ring and thinks we need to keep a very close eye on it. I'm supposed to talk to the cardiologist about it when we see him and make sure he doesn't want to take care of it. I'm torn, so whatever he decides I'll go along with.

Last Friday (I know, long week, huh?) we went back to Nashville and saw her nutritionist and GI doctor. I was dreading this appointment because it has been her GI doctor who has been pushing the feeding tube. However, they BOTH said it looks like she's doing great and there's no need to even think about a feeding tube for now! You could have knocked me over with a feather I tell ya! I almost said, "Are you SURE???" LOL

Today we saw an ophthalmologist here in town. The purpose was just a yearly check up to make sure her vision is ok, which it is. However he said he didn't like the fact that her tears are not draining correctly and wants to go in with a little scope and unclog her tear ducts... it's an easy, quick, painless procedure BUT they have to put her under again! *sigh* I hate it! I convinced him to hold off for awhile... let us get through the summer, get the kids back in school and THEN we'll deal with it. Fortunately he said that would be fine. Whew!

Now we're free and clear for Kenn until July 26th when she will see her cardiologist. Next would be the ENT on August 1st to pick a date for tubes. On August 26 we are going back to see the surgeon that did her hand surgery. He just wants to look at her thumb and make sure all is ok... he had mentioned right from the beginning that it may take two surgeries to fix it. We'll see...

Kameron saw the Developmental ped last week as well and he said he looks great! He does want us to get a hearing test on him and said we should get one done every year. That date is pending.

All 3 kids and I have been struck down with a cold for the last week and Kassidy's turned into an ear infection so we took her back to the ENT and guess what? She's getting tubes too! I may try to switch Kennedy over to Kass' doctor and he said he can do both girls at once. We'll see. Kass goes in on July 12th for her tubes.

OK I think you all are brought up to speed now! Please pray for Kennedy to keep gaining weight, she's up to 13 lbs 5 ounces as of Friday! And pray for all her upcoming appointments. Also, please pray for Kass on July 12th. She's never been under anesthesia before!

Tuesday, May 17, 2005

HAPPY BIRTHDAY KENNEDY!!!




On Monday our angel turned one! I can't believe how fast this year has gone! She had a big party on Sunday and had fun eating cake and making a mess! :)

Today was her one year check up... with my other babies that meant we would go to the doctor, talk about everything they were doing, get their shots and go home. So easy. Kennedy has to make everything complicated though! :) After filling a med student in on all her medical history (that was fun! LOL) she had to go get blood drawn out of both arms (they couldn't get a vein the first time) and then get her shots... but it doesn't end there... we now have referrals for ENT, ophthalmology, and cardiology, you'd think she were WAY older than one!

She weighed in at 11 lbs 11 oz today... that's only a 4 ounce gain from last week... but last time she gained 13 oz in 6 days! It seems she's doing this whole growing thing in spurts! She is drinking pediasure now mixed with a high calorie powder and lately her diet has included lots of birthday cake! I'm sure next week her weight will be up! (Unfortunately, so will mine!)

We go back to Vanderbilt on June 4th or something like that, so if you don't hear from me before, I will update then!

Here is the birthday letter I wrote for Kennedy on Monday:

Every year on my children’s birthdays I write a letter. I reflect on our year together and ways they have grown. I write about things they have taught me. Here I sit on Kennedy’s first birthday and I have started her letter over 3 times. Words do not seem to express the feelings in my heart. The list of things that Kennedy has taught me this past year would fill 10 pages. So what can I share with you about Kennedy?

Most of you reading this have been part of our lives this past year in one way or another. You have prayed for us. You have been here to cry with us when things were bad and to offer help in any way possible. You have been here to celebrate Kennedy’s accomplishments and rejoice over successful surgeries. You have sent letters, emails, cards, and gifts and for those I am truly thankful. This year has been… amazing.

Kennedy woke up a little after 1 this morning, so I was able to tell her happy birthday on her first birthday second, 1:28am. She looked at me with heavy eyes and a little grin and drifted quickly back to sleep. No doubt she was dreaming of cake with lots of frosting. As I sat there and held her I thought about how much has changed this last year. I thought about how scared I was the day she was born, I didn’t know if I could give this baby the things she needed. I thought about the way my heart shattered the first time I heard the words “Down syndrome”. Fear of the unknown is worse than anything. I thought about all the people we have met because of her. We have made life-long friends in the midst of storms. I thought about how far she has come, inside and out.

I thought about how much I love this child, this perfect little girl. She has made me a better mom, a better friend, a better person. In many ways I can’t believe she’s a year old already, but in other ways I can’t remember my life without her. It seems like she has always been here, stealing the hearts of everyone she encounters. Her smile can light up the skies; her touch can warm the coldest day. A hug from Kennedy is like a hug from God. She is… amazing.

When Kennedy was born one year ago our family was thrown into a state of uncertainty. She has opened doors to a world of doctors and therapists, hospitals and medical books. She has also shown us how to love unconditionally, to see the good in all people, and to see the work of God in a whole new light. She is our angel here to show us the world as it’s meant to be seen. I can’t wait to see what this year will bring. I can’t wait to see how she will change, and how she will change us. I can’t wait to tell you all about it. Happy Birthday my angel, we love you more than words can say.

Friday, April 22, 2005

Success!

Apparently ice cream covered with gravy makes you gain weight. Imagine that! ;o)

Actually, we doubled Kennedy's food intake (or at least as much as she would let us, you just can't MAKE a baby eat!) and it worked! She weighed in yesterday morning at 10 lbs 15 1/2 ounces! That's a 9 1/2 ounce gain from the week before! FINALLY she is doing what they want her to do! I would like to take her chart and enlarge it 1000 times and post it in all the clinics at Vanderbilt that Kennedy is seen at. It would say "SEE!!!! I told you she doesn't need a feeding tube!" :o)

After so many weeks (months really) of discouraging news, this is just what we needed. It's like a sigh of relief. We are not out of the woods yet... she has to continue to gain weight this way to make the feeding tube a thought of the past, but at least she's on the right track. Praise God!

Her nutritionist does want to put her on a high calorie powder which I can mix with her baby food. Two tablespoons a day will give her an extra 84 calories. I'll be keeping that stuff FAR away from my food! HA!

Thank you so much for continued prayers for our sweet girl! We feel them constantly! We are counting down to her first birthday! 24 days to go!

I will update again next week :o).

Monday, April 4, 2005

Kennedy vs. The Cookie...





From the looks of it, the cookie won! hehe
She sure did enjoy it though, and she enjoyed her bath afterwards too!

Anyway, onto our day at Vanderbilt.
You know, I'm beginning to think of that place like our second home. Kassidy knows it because of the sibling play area. She also thinks the parking garage looks like the one at Disneyland. It does kind of, just more depressing. Kameron knows it because of the HUGE train set they have. It really is awesome. I'll have to take a picture sometime.

I was thinking about it today, I go to Vanderbilt more often than I go to the mall. I go there almost as often as I go to church. I go there more often than I go to our own hospital here on Post, although Kass and Kam are trying to change that with their constant ear infections!

I'm thinking they really need to give me my own assigned parking spot or something. We drove around that dumb parking garage for 20 minutes today before I finally had to have Frank drop me and Kennedy off so we wouldn't be late. Then for her next appointment we had to go to a different building, thus a different parking garage. Really, they need to work with me a little!

I think about Kennedy's friend Kaleb though, who has to go three times a week for three hours each time to get dialysis because he has no kidneys. They are there MUCH more often than we are. I will forfeit my parking spot to them.

Oh yeah, the appointments. Our first appointment was with Kennedy's surgeon. I was a little nervous, I prayed hard that Dr. Lovvorn would be on MY side. There shouldn't BE sides in my baby's healthcare. We should be a team, working together for the good of Kennedy... this is proving to be a pipe dream though. Still, I just felt like if God would grant me ONE ally I would have enough strength in me to fight for what I know is right. He obliged.

Her surgeon was thrilled with the way Kennedy looked! He said that besides her weight gain, which was really encouraging, he could tell she was getting stronger, which she IS! He said he sees NO need for a feeding tube and that we should just keep doing what we are doing. In fact, he was so confident, we don't have to go back for TWO months, where we were going every couple weeks. Of course if anything happens we can always go back before then.

He brought a medical student in with him and was showing him how Kennedy can twist herself into all sorts of interesting positions. He also was telling him how far she has come in the last two months. It was a good thing for my heart to hear!

This afternoon we had our appointment with the nutritionist. Oh man I was so nervous. I just had this sinking feeling she would be talking about a feeding tube again. Still, I had my ally and I went in ready to fight! We went over Kennedy's daily intake, which seems like SO much for such a little girl, but of course, it's not enough. There's that negativity again. So she wants me to double her food every day. Double it! She wants me to start dipping her table foods in gravy and butter before I give it to her. Lots of yogurt and ice cream, cookies and jello, pancakes with extra syrup, anything high in calories, anything to fatten her up.

I have a seriously bad premonition that 6 months or a year from now they are going to make me tear this fattening food away from my carb addicted toddler and put her on a diet. Our nightmare could go from one end of the spectrum to the other so easily. The nutritionist assures me that with close monitoring, (ie: Weekly weight checks and reports to her) this won't happen. We'll see. Negativity.

So, for those of you praying for my baby, please pray that she will gain enough weight to make them happy, but that she won't gain SO much weight that she starts becoming overweight. That seems so funny to say, but when she was born, all the books and all the doctors warned me about obesity with Down syndrome. "Don't let them eat junk!" They all said. My brain focused on that, I was determined to keep her diet healthy and now they are changing the rules. I just pray they don't change them again later!

I told Frank this afternoon that if Kennedy were our first baby, I don't think I would want anymore kids. These doctors are totally sucking the fun out of being parents. How sad is that?

Well, now that I've rambled and probably bored you all to tears, I am off to feed my baby ice cream covered with gravy. OK not really, maybe that will be breakfast.

Friday, April 1, 2005

Frustrated!!!


You know how somedays you just feel like no matter what you do you can't win? Kind of like the song, "Sometimes you're the windshield, sometimes you're the bug." That's how I feel today.

I was so ready to come and post the AWESOME news that Kennedy has FINALLY broken 10 pounds!!! She weighed in on Tuesday at 10 pounds, 1 ounce. We were all thrilled and we were sure her doctors would be too.

However, she had her appointment with her GI at Vanderbilt today and he is just so darn negative! "Oh that's great she's gaining, but it's not enough." Give the poor baby a chance already! She is gaining more and more each week. This last week alone she gained 5 ounces. *sigh*

He is still pushing for a feeding tube. I'm still fighting it. I feel it's not necessary. She's gaining! She's doing what they said she would do. He said he wanted her to gain like she did when she was on the TPN. She DID gain then... too much! She swelled up like a sausage and it was all water weight, it was kind of scary. I don't want her gaining weight like that.

I want her to gain the weight she has been gaining... weight from my milk, and her baby food and the table food she's been exploring, including the half of a pancake she ate for breakfast on Wednesday morning! *sigh*

At any rate, we have an appointment on Monday with her surgeon. I also found out today just by chance that we have an appointment with the nutritionist the same day. Of course no one bothered to call and tell me this. Nice. I'm tempted not to go. If they don't have the time to call me, maybe I don't have the time to show up. I'm sure I will however, because if I don't, I'll just have to make another trip there later. *sigh*

On that note I'm going to go kiss my baby and congratulate her on her weight gain. I'm excited for her, even if her dumb doctor can't see past the dumb feeding tube to celebrate with us.

I'll update again on Monday or Tuesday. If I get the other doctors on my side, it will be a good update. If not, well...

PS. Doesn't my sweet Kennedy look so cute with a ponytail? She did that all by herself, I swear! I mean, she IS holding the comb and all! :o)

Friday, March 18, 2005

Weight gain and a bumbo seat!


Q: What weighs exactly 9 lbs 12 oz?

A: KENNEDY!!!!

YAY! Kennedy has gained 4 whole ounces in the last week! This is HUGE! Never in her whole 10 months of life has she gained that much in one week :o). I can't wait to call her doctors on Monday to tell them! I had a doctor appointment this week so I figured I may as well get her weighed, I'm glad I did! :o)

Anyway, Kennedy turned 10 months old on Wednesday. We are two months away from her 1st birthday. I can't believe it! This year has been so... incredible! With everything she has been through, she deserves the biggest birthday bash EVER! We're working on it! :o)

We got her a bumbo seat (the funny little chair in the picture up there) and she loves it! She sits there and plays with her toys like a big girl and you can just tell she is proud of herself! Now we just need to keep working on her balance so she can sit without the chair! It'll happen :o)

Kennedy is eating two stage 2 jars of baby food every day now (or sometimes she gets cereal mixed with fruit and miralax YUM). She also has discovered table food of the mushy variety since she has no teeth! :o) She LOVES french fries (go figure), mashed potatoes and gravy, clam chowder, applesauce, macaroni and cheese, and baked beans. A girl after my own heart! :o)

I apologize for not updating more often, life is busy busy as usual! I'll try to be better about that. Kennedy's surgeon has referred us to a nutritionist... again... *sigh* so if they ever CALL me I'll update then. I'm not real anxious to go (can ya tell? LOL) so I don't think I'll be the one calling them. :o)

Now that I've ended every paragraph with a smile, I am off to bed. Happy Easter to you all!

Saturday, March 5, 2005

Small Kennedy update...


Hello everyone!
Kennedy went in to the GI clinic yesterday and she weighed in at 9 lbs 8 oz, so she's gained 4 oz in 11 days... at least she's gained and not lost, but they really want her gaining more! Her GI really wants her on a bottle to see how much she's taking in, but she refuses to take it and I'm not going to make her miserable. Her GI and I seem to butt heads a lot. *sigh* Anyway he finally agreed to just give her time and see what happens since that's what her surgeon wants to do. Good thing!

In other news, today is my birthday, so we are going to the zoo so I can spend it with the monkeys (and the zoo animals too)! I'm sure I'll have lots of pictures to share later.

Kennedy goes back to Vanderbilt on Monday to see her surgeon so I'll get another update out then. :o)

PS. The picture of Kennedy with her big sister Kassidy was taken on Valentine's Day... can't imagine you would have figured that one out if I didn't tell you! ;o)

Wednesday, February 23, 2005

Checking In...



Hello everyone! I apologize for not keeping this page updated as much as I'd like too! Life has been busy busy busy!

Anyway, we went back to Vanderbilt for a weight check on Monday. Kennedy weighed in at 9 lbs 4 oz... only one ounce more than she was 10 days before :o(. Very discouraging! Her surgeon said that he is going to give her a little more time to start gaining before taking other measures. He said worst case scenario is that her blockage was not the ONLY reason for her failure to thrive and there could be more going on with her. If she doesn't start gaining soon, we'll start the lovely process of running more tests again.

Please keep Kennedy in your prayers that she gains enough weight to keep her doctors happy!! She's already been through so much, and she needs some down time! We go back to Vanderbilt again on March 4th to the GI clinic and then again on the 7th to the General Surgery Clinic for another weight check.

In the meantime she is eating eating eating! Last night she ate almost a whole jar of stage 2 baby food! I was shocked! We are finally getting the miralax down her too, we haven't seen any amazing results yet, but hopefully soon!

OK I guess that's it for now!
Enjoy Kenn's new picture up there, I got that hat for her at The Children's Place for 49 cents! I love a good deal! :o)

Tuesday, February 15, 2005

Success!

Well after 3 suppositories Kennedy finally pooped! Hallelujah! Now if we can just get her on a regular schedule we'll be in good shape :o).

In other news, Kassidy and Kameron had their first dentist appointments ever today. Kassidy did GREAT! I was so proud! Kameron screamed and cried and they had to hold him down, but his teeth are clean :o). I am very happy to report neither one of them have any cavaties and the dentist said their teeth look awesome! He said he can tell they don't get much juice or candy (big mean mommy). :o) They have to go back in 6 months for another check up and the dentist is going to make an appointment for Kennedy then too, even if she doesn't have teeth yet. We really will need to stay on top of her dental care.

My grandparents are coming tonight from CA to stay for a couple weeks, we are looking forward to it! We'll show them around the wonderful state of Tennessee ;o).

Kennedy goes back in on Monday for a weight check... hopefully we'll have another good report then!

Sunday, February 13, 2005

No news... and sitting up!


Look at my big girl sitting up! This is a trick she learned while she was in the hospital! We were doing our daily sit ups on the hospital bed and she got brave and let go of my hands and grabbed the bars of the bed and there she sat! Now I have proof for her therapists! HAHA! :o)

No news today... still no poopy... I never thought I would actually WANT to change a poopy diaper, but it would be GREAT right about now.

My mom left this morning, she said something about having to return to work? What's that about??? We sure are going to miss her here! Kameron has asked for her a few times already. She took one of our kittens home though so that's a good thing. If anyone in the TN area wants a kitten I have two cute ones free for the taking!

OK that's all, I really just wanted to share the picture :o).

Friday, February 11, 2005

Weight loss

This is a phrase I rarely get to use for myself, though I would love to! Unfortunately, it's a phrase I have to use for Kennedy today. We went in a few days early to get her weight check done since Kam had an appointment right up the street.

When we left the hospital last Sunday she weighed in at 10lbs 5oz, today she weighed in at 9lbs 3oz. :o( Very sad. The only good thing is, they are saying that it COULD be all water weight that she lost after being pumped full of nutrients and then the IV fluids during surgery. Also, she's still above the weight she was when she entered the hospital, so there is not immediate cause for concern. Still, it's frustrating.

Also, she still hasn't pooped! The nurse today gave her another suppository, which worked great last Sunday, but here we are 8 hours later, and nothing. Maybe tomorrow.

On a good note, while we were there we went up to visit Kennedy's nurses and her little boyfriend Kaleb (who we hope will be going home VERY soon). It was nice to see everyone and then be able to leave again! :o) I took pictures, of course, which I will flood your in-boxes with once I get hooked back up to my own computer.

OK there's today's update along with a picture of my grumpy baby... it's a rare occasion that she looks like that! I think it's adorable, of course! :o)
Till next time,
Renee

Thursday, February 10, 2005

Packing away baby clothes...

Kennedy is doing well, we still can't get the miralax down her, but we're trying to get creative! She has her first weight check in Nashville on Monday so we will see how things look then. I just hope that her doctor is not too upset about the fact that she hasn't been taking her laxative regularly and she hasn't pooped :o(. My mom and I are doing the best we can, but she's one stubborn kid!

Wednesday she had her first day back to therapy. Not much has changed there, she loves it at first, and then she hates it... especially tummy time! Big mean therapists making her work :o). Of course tonight at home she was playing on her tummy and holding her head up and looking around and smiling like she LOVES it! I need to video tape this so her therapists don't think I'm a liar!

My mom and I finally got a full night of sleep last night. I don't know if Kennedy is feeling better or if she finally got her nights and days figured out again or maybe she was having mercy on our weary souls... I guess we will see tonight. :o)

Also, while cleaning today I got to do something awesome! I got to pack away clothes that Kennedy has outgrown! How cool is that? Of course it was just preemie clothes, but still! I thought she would never outgrow them. Now we're breaking out all the 0-3 months stuff... some is still HUGE on her, but we'll get there. I'm hoping by her first birthday she'll be in 3-6 months size... that's 3 months from now... it could happen!

OK it's late so I'm off. We have to get up early tomorrow. I apologize to all of you who have emailed me and have not gotten a response yet, I'm not ignoring you, I swear. I just haven't had time to sit and answer mail. I haven't had time to catch up on my boards either, but I will! Life will get back to normal one of these days! :o)
Love you all,
Renee

Tuesday, February 8, 2005

Update from home

OK I'm not sure if anyone is still checking this page since we're home now, but here's the latest.

Kennedy has had a rough couple nights. The first night she wanted to stay up and party and then she got a tummy ache... we think. My mom and I took shifts staying up with her.

Last night again she kept crying like she was in pain. I'm not sure what's going on exactly. We'll see what happens tonight!

The Miralax has proven to be quite the adventure. She won't take a bottle, won't take a sippy cup, we tried a syringe and she spit it all over! I mixed it with juice which she's never had before so I thought she would love it! Wrong! She's one determined baby, I'll give her that! :o)

On another note, it's good to be home! Kass and Kam are doing great, and my mom is still here to help me get back into the swing of things, thank goodness! We have a few appointments to go to this week, so the extra help is much appreciated!

Anyway, I'll update again when things change :o).
Renee

Sunday, February 6, 2005

Hello from HOME!!

Kennedy did really well yesterday. She went from noon on with no pain meds at all! She ate like a pro and only spit up once, and it was only a little. It takes a little longer to burp her now, so I have to remember to do it well!

Her surgeon came in and said she looks great and although she is still fragile, he doesn't see a reason why we couldn't go home today. He said he was pretty surprised with how well she is doing. Good thing we all know the Reason for her thriving! :o) He's going to be following her closely this week, so we will be going back and forth, but he doesn't foresee any problems.

She still hadn't had a dirty diaper when he came in so he ordered a suppository for her and then wrote her a prescription for Miralax which I know many of my friends' kids are on, so I feel pretty comfortable with it. Then right before we left the suppository kicked in and she pooped :o). That's a great sign that everything is working well!

Anyway, on that note I'm off to shower and wash away the hospital smell and then we're going to eat real food! YAY! Thank you all once again for all the prayers for Kennedy. I know she would not be doing as great as she is without them!

We love you all,
Renee

Saturday, February 5, 2005

Soon??

Well today as been a good day. Kennedy is more playful today and she has been going longer and longer without Morphine. They haven't pulled her completely off of it yet thank goodness.

This morning her surgeon came and yanked her tube out (literally) it was not fun! She got to eat a few hours later and she did really well! She kept all her food down. She still hasn't had a dirty diaper, but her nurse said her bowel sounds are great and she's been really gassy, so that's a good sign (and not at all gross!) :o)

SO her surgeon said if she has a good night and continues to eat well, she should be able to go home SOON! (Like he even mentioned tomorrow if we can get her off the morphine!) So let's pray my baby is not a drug addict yet and we can get out of here!

I'll update again as soon as we know!
Renee

Friday, February 4, 2005

Small update

Hello everyone!

Not too much to report today. Kennedy has been sleeping almost continuously for the last 24 hours. It seems to be an endless cycle, she wakes up in pain, we give her Morphine, she goes to sleep for about 2 1/2 hours and half an hour after she wakes up it's time for more morphine again. I think they are going to try to start weaning her off tomorrow... her surgeon said they could give her tylenol. I certainly hope he meant tylenol with codiene! As much as I love Johnson and Johnson, something tells me straight tylenol just won't cut it!

We're still waiting on the results from the last two blood cultures they've done. The results still are not in, which is weird! Hopefully no news is good news.

Her surgeon mentioned they MAY take out her tube tomorrow, we'll see. She still hasn't had a dirty diaper. Hopefully soon!! :o)

Well, like I said, not much to report, but that's ok! The quiet days are good!! :o)
Till tomorrow,
Renee

Thursday, February 3, 2005

Kennedy's night

Well, as expected we had a pretty rough night last night. Kennedy is in quite a bit of pain. They are giving her Morphine every 3-4 hours which works great for the first hour or so and then it kind of tapers off.

Around 1am her IV decided to stop working, so they had to pull it and start meds through her other IV that had a saline lock. Thank goodness she already had another one in or it would have been double torture! Around 5 they had to come back to do more blood cultures to see how her blood infection is doing, and then later they had to take more blood to test the level of antibiotics in her system. Apparently if she gets too much it could be toxic. Yikes!

She has two student nurses with her right now, and she's just laying in bed staring at them. She hasn't had any smiles for us yet, but I think once the drugs wear off she will.

We've had a number of surgeons come in to check on her today and they all said it looks like she is doing well. One of them said that I may not be able to feed her until Monday! I need to get a second opinion on that, Monday is a long way off from now!

Kennedy has received four packages today! :o) The toys on her bed are piling up and her door is almost completely covered in cards. She's so loved! :o)

Anyway, I guess that's it! I'm going to get back to her room but I wanted to let you all know how she was doing. Thank you again for signing our guest book! I will print it out when we get home and save it for her to read later. I know she will cherish it as much as I do!

Love you all,
Renee

Wednesday, February 2, 2005

Out of surgery!

It's been a long day!
Kennedy is out of surgery and doing well. Her surgeon said everything went just as he'd hoped it would. I mentioned before that they would use an epidural for pain management, but because of her blood infection they were not able to do that... infected blood in her spinal fluid would be a very bad thing. Instead, they have her on morphine for pain. Even with the tiny amount she received, she is knocked out. She did wake up on the elevator ride back to her room, but she just stared at me for a few seconds and drifted back off to sleep.

They are monitoring her closely and have oxygen ready in case she needs it, but so far she has been breathing fine on her own. Her pulse ox is staying between 96-98, which is good.

The incision site is a little bigger than I thought it would be, it kind of shocked me when I saw it. She has stitches which will dissolve over time and dermabond on top of the stitches. She'll have quite the scar I'm afraid. Guess it will make for good conversation when she gets older :o).

She has an NG tube through her nose, but it's just to drain her intestines until they get working on their own again. Once she has a dirty diaper, the tube will come out and she will be able to try to start nursing! Her doctor said this could take a few days. We'll see! In the meantime, I'm pumping and storing my milk. Fun! :p

OK I think that's it. I'll try to update again tomorrow if anything changes. It depends on how she is feeling. I don't want to leave her if she's in pain.

Thank you all so much for praying for Kennedy! Please continue as she recovers! We know there is nothing more powerful that can be done!

We love you all,
Renee

Tuesday, February 1, 2005

Surgery TOMORROW!

Well, Kennedy's 3rd round of blood cultures came back this morning and it is STILL showing infection. :o( So they are going to pull her PICC line out this afternoon and replace it with a regular IV. They are going to cut out her nutrients and just continue with her antibiotics.

Since she does not have a fever and her lungs are now clear, her surgeon decided that he's going to do her surgery tomorrow! Nothing like a little notice huh? Ohhh my nerves are on edge!

She can nurse until 4am and then I can't feed her after that, and her surgery will be mid-morning tomorrow... between 9-10 he said. The surgery will take about 3 hours and as long as everything goes well she will be put back into the same room she is in now. If things don't go as planned she'll be put into the Pediatric Critical Care Unit (PCCU).

So, now more than ever, pray pray pray!!!! This is what we've been waiting for since we got here, but it's still scary! I'll update after her surgery as soon as she is out of recovery and asleep. The surgeon said she will be in quite a bit of pain, so I won't leave her if she's awake. I'll find a way to get an update out one way or another!
Until tomorrow,
Renee

Monday, January 31, 2005

Things I've learned these last 2 weeks

Kennedy and I have been a resident at Vanderbilt Children's Hospital for two weeks now. The things I have witnessed will change my life forever.

As each day passes I become more familiar with our temporary home. I am learning the nurses’ first names, how many children they have, what they like to do for fun. They are here to take care of Kennedy, but I can't help but feel they are looking out for me as well.

We are becoming friends with the other "residents" on our wing. As I walk down the hall, I stick my head into our neighbor's room, "How's Kaleb doing today?" We swap the latest updates as our babies reach out to touch each other, each connected to their various machines.

We have said goodbye when one family leaves, and I wonder who will fill that room next. Will we still be here when they leave too? Or will they be the ones seeing us off, wishing they could be in our place?

During the day the halls are busy. Doctors come and go, checking in on their patients and discussing the next step in each child's care. Family and friends come to visit, bringing gifts and lots of encouragement.

There is one room, though, that remains empty, except for the tiny baby in the hospital bed. His only companion is his nurse who comes in to feed him and play with him in between taking care of her other patients. The rest of the day he lays in his bed alone, and waits...

Every parent walking the hall shows tell tale signs of what their child is going through. You can see it in their eyes: Fathers with brows furrowed in concentration, mothers with tear streaked faces as the doctors discuss their child's prognosis. Others are filled with relief as they realize the worst is behind them and they will soon be going home. Most often I see the same thing that is reflected in my bathroom mirror: Sheer exhaustion.

The nighttime is quieter. Parents settle their babies in as the care partners do one last round of vitals. The doors are closed and prayers go up for a peaceful sleep, a worriless sleep, a refreshing sleep. If they are lucky, their prayers are answered.

My mind often drifts back to one of the nights we were here in November. I was up late and wandered out into the hall to see a team of doctors in one baby's room. I stood at a distance, trying to make out the hushed voices. Seconds later, the mother walked out carrying her baby's blanket and crying softly. Soon the doctors left, giving her one last reassuring pat, one last sympathetic glance. She stood there for quite some time staring off into space, not quiet knowing what to do next. Finally she dialed a number on her cell phone and uttered two small words: "It's over." My heart broke as her tears flowed down her cheeks onto the blue blanket she clutched to her chest. I retreated to my room, knowing I had already intruded too much, and I prayed.

Our time here seems to have run into one long day. The date, the day of the week, even the time seems unimportant. I don't know what the weather is like outside, nor do I care. I DO know our room is set to 75 degrees, day and night. The fact that the rest of the world outside these walls is going on with their lives is sometimes incomprehensible to me; yet I am reminded of it with every visitor, every phone call, every email.

While the length of our time here is still unknown, we are slowly starting to see the light at the end of the tunnel. Each task that is accomplished, every illness that is overcome, is one step closer to Kennedy's surgery and one step closer to us going home. I am anxious to leave, to see my children and fall back into my daily routine. At the same time though, I pray I never forget the things I have learned here. Hopefully I can help others with my findings:

1. No matter your surroundings, there is always an opportunity to let the love of God show.

2. Nurses do not like to be called "Hey you!" Take the time to remember their names.

3. Doctors don't always tell you everything. Don't be afraid to ask questions, or get a second opinion.

4. Hospital food, by definition, contains no salt. Ask for extra!

5. Wash your hands often. When in doubt, wash again.

6. You could hear the beeping from the IV in your sleep at any given time.

7. Don't fight with the side rail of the hospital bed. You're sure to lose and you'll probably get hurt.

8. Times of crisis show who your true friends are. Cherish them and thank God for them every day.

9. No matter how alone you feel, take comfort in knowing that God is always with you. He won't even look away when they draw blood.

10. No matter how weak, tired, or hopeless you feel, God WILL be your strength.

As hard as these last two weeks have been, the things I have learned about myself, my family, my friends and my God have taught me lessons I may not have otherwise learned. Would I choose to do this again? No! But I promise to remember and maybe even come back to visit.

Sunday, January 30, 2005

No news is good news!

Well, we know nothing more today than we did yesterday, so I guess no news is good news! :o) Kennedy is doing well. She's still retaining a lot of water, but she's in a great mood!

My mom brought Kass and Kam up today and we decided to go to Chuck E. Cheese. It was WAY crowded but we had a lot of fun. It was nice to spend time with them away from the hospital. Kass wanted Kennedy to come too though! Hopefully next time! My mom is going to try to bring them back up on Wednesday.

I'm still feeling pretty yucky from my cold, so I'm praying for one more night of good sleep and hopefully it will get out of my system!

OK, I know this update is boring, but I can't think of anything else to say! :o)
More tomorrow!
Renee

Saturday, January 29, 2005

X-rays, Infections and a Prayer

Weekends are SO boring around here! The halls are quiet, the food is blah, even the gift shop is closed. It's been a long day. Kennedy and I have both been lazy and just laying around for the most part. I have to say though I was making her toy dog do tricks earlier and she was laughing SO hard! My mom is going to bring Kass and Kam tomorrow to see us and hopefully we can do something fun! :o)

SO we got Kennedy's X-ray results FINALLY! And her lungs look clear from the pneumonia. However her doctor said she has (forgive my spelling) Peripheral Airway Disease. This is not an immediate concern for her, but he said many times this will develop into Asthma. We'll worry about that when/if it happens! At least the pneumonia is gone! Praise God!

He also had the results of her blood cultures so far and it's still showing infection! (GRRR) So he's going to check it tomorrow and if it appears to be the same infection(s) they are going to take her PICC line out and just have me continue nursing. He said her blood tests showing her nutrition came back great! He thinks once we get the PICC line out, the infection should clear up and then he can operate the end of the week. (Haven't we heard this before?) :o)

She's lost a little of her water weight, so that's good! She weighed in at 9lbs 11oz last night, I believe. He said she will lose the rest once the PICC line is out.

So we've had more good news than bad today, the end is in sight at least!

Last night the father of Kennedy's friend, Kaleb (who "lives" two doors down from us here) stopped by to see how we were doing since she hasn't been to visit in a couple days. We chatted for awhile and then he headed back to their room. He came back later though and said he was reading his Bible and praying and he felt the overwhelming urge to pray for Kennedy and our family :o). So we talked some more and then were able to pray together! It was so neat! Kaleb's family has pretty much lived in this hospital off and on his whole life, so they totally understand what we're going through here. I just know God sent him right when I needed him! As soon as her blood infection is gone I am going to get pictures of Kenn and Kaleb together! Who knows, we may have made life long friends! :o)

Frank arrived to JRTC safely. He gave me a quick call about half an hour ago just to let me know he was there and they were unpacking and stuff. He said he should be able to call every night when they aren't out in the field. Please pray for his safety!

I guess I have rambled long enough. Kennedy is snoozing so maybe I will go lie down too. My cold seems to be a little better today as long as I keep taking my medicine, so hopefully one more night of good sleep will knock it out of me!
Until Tomorrow,
Renee

Friday, January 28, 2005

Thrush

Hospitals and medicine are funny things. We came in for Kennedy to have surgery and she got sick instead. So they put her on medication to make her better and the medication gives her thrush. So now she needs more medication to get rid of the thrush, and since I'm breastfeeding, it could be passed on to me, so then I'll be on medication too. And still no surgery! Just shows the smallest decisions can change everything!

Besides the thrush, our newest problem is weight gain. (Not lack of weight gain, not weight loss, but weight gain. Never thought I'd be hearing myself say that!) When they weighed Kennedy yesterday morning she weighed in at 9 lbs 8 oz which is a HUGE gain since she was only 7 lbs 2 oz when we got here. The nurses said the nutrients would make her gain a little, but they were suspicious. Last night they weighed her again and she jumped to 10 lbs 2 oz! In one day! Not only that, she is blown up like a stuffed sausage (no, I'm not calling my baby a stuffed sausage! LOL). Her ankles and wrists have completely disappeared and her belly is sticking out WAY too far. She's retaining water. They said it's probably from being over hydrated with the nutrients, but she needs the nutrients, so there's not much they can do. They said after she's weaned off she'll lose all her water weight. In the meantime, I have a very chubby baby with huge chubby cheeks. I'll take lots of pictures :o).

Her chest xrays from this morning have not come back yet, so we don't know how her lungs look or if the pneumonia is gone. They did more blood cultures at 5am so we're waiting on those too... they will take a few days to really grow out and see what's going on.

I am officially sick with Kennedy's cough/cold. (Isn't is nice to have a child who shares!) :o) I've been sucking on cough drops and Frank brought me a vaporizer, so please pray for me too, that I can get over this quickly. Being sick in a hospital where no one can help you is no fun!

So, again I leave you with a whole lot of nothing. Frank is here today. We went out to lunch after the nurses assuring me Kenn would be fine (and she was) and now he's up playing with her while I sit here to update you and then I have to run and do laundry.

Thank you to those of you who sent cards, I will send you personal thank you emails later. Kennedy's door is the most decorated on our wing now! :o) We haven't gotten any duplicate cards yet either, so that's really neat!

Please pray her xrays come back clear! It's baby steps towards surgery now! :o)
Love you all,
Renee

PS to the person who asked about the pay day candy bars, I'm ready and waiting! :o)

Thursday, January 27, 2005

Long night and a crazy day!

There's no better way to describe the last 20 hours or so!
Kennedy had a bad tummy ache last night... at least that's what we think it was. She wasn't happy unless someone was patting her tummy or her back. Finally at 3am I pleaded with the nurse for some tylenol, tummy drops, something! When neither of those worked another nurse took her for an hour and banged on her back for me so I could sleep. Kenn fell asleep around 4, the nurse put her back to bed and she woke up screaming 15 minutes later! AHHHH!!! We had a student nurse that came around 8 and she took over with Kennedy so I could sleep again. Thank God for nurses! She seems to be feeling better this afternoon, so we are praying for a good night's sleep tonight! :o)

This morning her surgeon came in to inform us that her blood cultures have grown out more. She has two different types of staph infections, and one of them is showing resistant to penicillin so now the doctors or nurses who come in contact with her have to wear gloves and gowns before they can touch her. I guess so they won't spread anything to anyone else. We can still have visitors, as long as they wash their hands really well before and after touching Kennedy and they don't recommend having children visit :o(. (Kass and Kam can still come, we just have to sanitize them before they leave and they aren't supposed to touch Kennedy at all!)

The saddest part is that Kennedy can no longer leave her room. She's going to miss our evening strolls around the 7th floor!! Tomorrow they are going to redo her chest xray and blood cultures since she's been on antibiotics for a few days now and they are hoping by Monday she'll be allowed out of her room again.

Her surgeon is now saying he should be able to operate the end of next week... if nothing else crazy happens! All in God's timing! :o)

Besides being tired, I'm ok! I was picking through my stash of junk food last night and came across a payday candy bar... I forgot how much I like those things! :o) (It's the simple joys in life, right?) Frank is coming tomorrow to spend the day with us before he leaves for JRTC, as long as Kennedy is doing well and I feel it's ok to leave her, we plan to go out to lunch. We're hoping the fresh air won't kill me! HA!

Anyway, that's all for today. We'll have good news tomorrow, I can feel it! :o)
Love you all,
Renee