Thursday, December 21, 2006

Kennedy's surgery update...

We just got home from Kennedy's colonoscopy and everything went really well. She got bumped up because the kid in front of her ate breakfast this morning. LOL It was over in about half an hour and they didn't have to intubate so she woke up SO much better than usual!

The good/bad news is that they didn't find anything that could be causing her bleeding. She sometimes gets constipated, but she bleeds LOTS even when her poop is soft. Her GI said that she just tears up there no matter what and there's really nothing they can do. They did take biopsies while they were up there so those results should be back in a couple weeks. 

After we left the hospital, we ran through and got her some french fries. She ate a few and then fell asleep. She's in her bed now. She is REALLY annoyed with the bandaid on her hand from where the IV was. She keeps pointing and saying "Owie", but she won't let us take it off either! LOL 

Anyway, thanks for all the prayers! They worked!!!

Sunday, December 17, 2006

Strep, Strep, Strep... (and other medical stuff!)

I could just cry! I had this HUGE LONG update all typed out and before I hit "update journal" I always copy my entry just in case something happens. Well... instead I hit PASTE! UGH It's all gone. Now you'll never know the wonderful update I had for you all. *sigh* So here's my half hearted update.

I am so sorry it has taken me so long to update. We have been busy and sick... and busy... and then sick again... and busy. HA! I will try not to take so long again!

Speaking of being sick... Kassidy is now on round SEVEN of antibiotics for strep throat. Every time she gets better and her meds are gone, she gets sick again a few days later... she then passes it on to either Kennedy, Frank or I. Kennedy has had 5 round of meds... me, I've had it twice... Frank has had it once... even my mom got it once. Did you notice who I left out? Oh yes, my darling son Kameron... the one who never got sick. We decided to take him in anyway, and it turns out he's a strep carrier! Little booger! I have to say though that Kassidy got a kick out of telling him he made her sick! LOL So once we treated Kameron, they assured us the cycle would stop. One week later Kassidy got it again! *sigh* Can I just say I HATE strep throat?? Kass and Kam both have appointments with ENT on January 16th. They are going to talk about when to get Kass' tonsils out (SOON I hope) and set up a sleep study for Kameron... he snores something HORRIBLE and I'm hoping they can fix it. His future wife will thank me! I will update on them when I know more.

Speaking of snoring... did I ever mention my husband snores? I'm not talking about a light snore... I'm talking a helicopter IN our bedroom, while I'm trying to sleep! After several nights on the couch he decided to see a doctor. Like most Military docs this one took a wait and see approach. Did you TELL him how bad it is? I asked. Yes, yes blah blah blah. The next week we ran into this doctor and his family at lunch! Hallelujah! I am not ashamed to say I begged (actually I told him that a visit to an ENT would be WAY cheaper than marriage counselling! LOL). And viola! A week later he was in to the ENT! Turns out Frank has a deviated septum. His nasal passage is really messed up. She asked him if he'd ever been hit in the nose. When he said no she said he must have been born that way then. LOL She said it's a pretty dangerous thing to live with though so they will be doing surgery to correct it. They want to do a sleep study first though to see how bad his apnea is.

Speaking of sleep studies... Kennedy had a follow up sleep study on December 1st to see how well her T&A surgery went. Her ENT said that if she still has apnea she will have to use oxygen while she sleeps every night. Needless to say we were praying hard that wasn't the case. She had a really rough night the night they did it, so they were worried they didn't get enough info to tell. We got a call a few days ago though, and her ENT said she still has VERY light sleep apnea, but not enough to be concerned about or warrant oxygen! So her surgery worked! YAY!!! Next on the plate for her is this Thursday. She will have a colonoscopy done to see why she bleeds so much when she poops. They are thinking she may have polyps, which if she does, it's easily correctable that day, so we're hoping this is the answer. Please keep that in your prayers and I will update when I know more.

Speaking of... ok just kidding, I can't think of anything to relate to that! LOL So I guess onto me: I am now 18 weeks pregnant (or very close to it) and starting to get big!! Funny how the 4th kid does that! LOL This Tuesday is our 8th wedding anniversary, and the day that we found out that Kennedy was a girl 3 years ago, so what better day to have our ultrasound??? I am praying this baby cooperates and we find out what we're having!!! I am so torn on what I want this time. I'll be totally happy either way... I just want to SHOP!!!

Speaking of shopping (bet you thought I was done with that huh? LOL)... I have a couple boxes to mail, 2 more things to wrap, and I am TOTALLY done with all my Christmas shopping! YAY!!! I'm so excited for the kids to open their presents this year. We picked things all 3 are totally going to love! In addition to leaving cookies and milk for Santa and carrots for the reindeer, we also bake a birthday cake for Jesus! I love traditions! 

Anyway, I guess that's it finally... though it will never be as grand as the original update I wrote. But I'm not bitter!

Saturday, November 4, 2006

HAPPY BIRTHDAY KASSIDY!!!

Happy Birthday, Kassidy.
Exactly 7 years ago today you made me a mommy. How cool is that? And now look at you! You are this beautiful little girl... ok, girl... not so little anymore. You are everything I could have imagined in a daughter and more! I can't believe it's been 7 years!!

Today you will get your new bike. I know you're going to be excited. Next thing you know we'll be getting you a new car. That scares me! Don't play the radio too loud and don't drive with friends for at least 2 years ok? For today I'm going to worry about a helmet and knee pads.

Last night I was reading through some of your past birthday letters and in every single one I said that you are so compassionate... that your love for others humbles me. Every year you have shown what a sensitive, kind kid you are, and that shows what kind of adult you will be. It is one of the highest honors for someone to see how you care for others and appreciate it. I know I'm not the only one who sees it. My hope is that I will be able to write this in every birthday letter to you for the rest of my life.

As always, you have accomplished so much this year and I'm so proud. I'm even more proud because you are paving the way for your siblings. You are setting good examples and teaching them things in ways that sometimes I can't even comprehend. You amaze me, every day. I know I do not say it often enough.

Now as I sit here telling myself that just because you are getting older does not necessarily mean that I am getting older, I hear you waking up! Let's start the best day of the year!! (OK 1 of 5 maybe!) I love you my big 7 year old girl! I hope you have a fabulous, wonderful, great, super, perfect year!

Love,
Mom

Friday, November 3, 2006

HAPPY BIRTHDAY KAMERON!!!

Happy 5th Birthday Kameron!

I can't believe you are 5! It seems like just yesterday I was writing your 4th year birthday letter... and your 3rd and 2nd... you are growing up so fast!

This year has been a growing year for you. I have watched you mature so much. You are an awesome big brother. I love the way you protect Kennedy (and Kassidy too) and show concern for others around you. You notice things that most others don't pick up and it shows what a big heart you have.

You have blown me away academically. Every time I hear you read a book or a big word that an almost 5 year old shouldn't be able to read, I'm in awe. I love that you love to learn and I'm so excited to see what you'll accomplish in the next year.

You have an amazing sense of humor that seems to grow with age. You love to make people laugh, even if your jokes don't always make sense. I know with time you'll figure that all out and you'll have everyone around you laughing all the time. The gift of laughter is rare, Kam… I have no doubt it can help you change the world.

Our journey together has been so special. There are times when I wonder what the heck you're thinking, and times when I wonder what the heck I'm doing, but I think overall we're heading down the right road. You are changing from a little boy to a big boy right before my eyes, and I couldn't be more proud.

It has been so fun to watch you get so excited about your birthday this year. You've been counting down from "two Fridays ago" just like I did when I was a kid...and still do now! Then this morning when I thought you would be the MOST excited, all you could say was, "I'm almost SIX!!" Slow down my baby, time passes fast enough. Enjoy being 5, at least for a little while.

I love you with all my heart,
Mom

Friday, October 20, 2006

A Modern Stone-Age Family!

Our Buddy Walk went just great!! Thank you to all of you who helped support us! Our local group together raised over $5,000! And they estimate that the Nashville walk raised over $38,000!! YAY!

Tonight was the kids' Fall Festival at Kassidy's school. They get to wear their Halloween costumes and play games and eat food! It's a lot of fun (and a little hectic! LOL)

We broke tradition this year and decided not to do Disney costumes... must be that California blood is slowing dying away... so sad... still I think the kids looked awesome!

Here is our modern stone-age family!!!

Flintstones... meet the Flintstones...


Fred and Wilma


And my adorable Pebbles


Austin aka Bamm Bamm... Kennedy's future husband ;)


Don't they make a cute couple???


And a couple from the Pumpkin Patch!




Until next time!

Thursday, October 5, 2006

Family update!

Sorry it's been so long since the last update, this pregnancy has been starting out not so fun! I have a kidney infection already which I dealt with when I was pregnant with Kass and Kam but not in the first trimester! Sheesh!

Kennedy is doing well... she had another bout with pneumonia last week, but she's on the mend finally. She had her repeat swallow study and is not aspirating on the thickened liquids which is good because she would have needed a g-tube if she were. She is still aspirating on thin liquids so they will repeat the study again in February. Hopefully she'll grow out of it!

She will have a repeat sleep study in November to see if she still has sleep apnea now that her tonsils and adenoids are gone. If she DOES she will have to go on oxygen every night. I've heard this is a pain in the butt for everyone so we're praying the apnea is gone!!

Kassidy will be going in for a sleep study sometime soon... she is taking part in a research project at Vanderbilt through the Down syndrome clinic. They need typical peers to do the study on so they have results to compare to. Should be interesting to say the least! I had her first parent/teacher conference yesterday. She is WAY above grade level in everything and is making straight As. The only thing she needs to work on is her organizational skills... must be heriditary!

Kameron is driving his teacher crazy and she in turn is driving me crazy. It's going to be such a fun school year for him... bleh. He is doing well for the most part and reading everything he can get his hands on... including looking over my shoulder while I type! LOL He just amazes me!

OK I'm going to really really really really try to keep updated more often, promise!!

BTW, October is Down syndrome awareness month!! There are buddy walks all over the country that would love to have you walk... or you can sponsor Kennedy!! Let me know if you need more info!

Thursday, September 7, 2006

Small update...

Sorry I haven't updated! We have hardly been home and by the time we get home we're exhausted!

Kennedy is eating and drinking again though a lot of her liquid intake is still coming out her nose. Her ped set up an appointment for another swallow study next Thursday to see if she is aspirating on the thickened liquids as well. If she is, we have to talk about a G-tube. We're really hoping it won't come to that!!

Other than that, Kass and Kam have started soccer and we've been taking advantage of the nice weather and swimming whenever we get the chance... before long we'll be stuck inside to get out of the cold and you'll be sick of hearing from me!

Thanks to all of you who check in and pray for Kenn! It means a lot!

Thursday, August 31, 2006

Kennedy update...

Kennedy is still not feeling great... she's slowing way down on her drinking and is still only eating jello, pudding and ice cream and she had a little bit of mashed (more like pureed) potatoes tonight for dinner. The majority of what she WILL drink comes up and out her nose. I talked to her ped about this today and she said we may have to order Kenn another swallow study to see if she may be aspirating even on the thickened liquids... if she is, she wants to talk about a g-tube :(.

She's still in quite a lot of pain... they switched her from codiene to lortab (aka vicodin) and are hoping that will help more with pain control. The codiene was every 4 hours and by hour 3 she was miserable, so hopefully this will work better. She WANTS to eat, but if she swallows anything with any consistency (even apple sauce) she screams. *sigh*

Her ped ran bloodwork and did a chest x-ray yesterday and both came back clear, thank God! So still no reason for her fevers... she said it's possible she has a sinus infection, but if she does, the amoxicillan she is on should get rid of it.

SO the main concern right now is dehydration (again). She only drank about 6oz today and I'm not sure how much of that actually stayed down. I've been trying to fill her up on jello, but she's getting sick of it already. She looks at me like, "You're kidding right?!"

So just keep praying she drinks drinks drinks and that her pain starts subsiding soon!

Monday, August 28, 2006

Kennedy's HOME :o)

Kenn drank about 8oz today which is a good start... I don't know who was more happy to see us leave... Kennedy or the doctors! LOL I failed miserably with the inhaler and getting Kennedy's medical records. They told me to get her records from surgery that I'd have to sit down with her ENT and go over it page by page... have you ever heard anything like that?! I am just not willing to do that. The nurse also told me (off the record) that if Kennedy's ped requests her records there is nothing to stop her from giving me a copy... so that's the route I'll go.

I'm very emotionally drained... I hate that I always have to fight so hard to get her good care... why can't doctors just understand Kennedy the way I do? Not only is she not a "typical" kid, she's not a "typical" kid with Down syndrome either... at least not medically. *sigh*

It's not over with the doctors, I'm going to be calling patient affairs. I just found out my next door neighbor's son who also has Ds has to have his T&A surgery soon... so maybe I can make the doctors behave for them! :lol: I did tell her a few things she should DEMAND before surgery is even scheduled. Live and learn I guess.

Anyway, thanks for your prayers and support... they mean more than you'll ever know!!

Sunday, August 27, 2006

New doctors... new day!

OK so today Kennedy got new doctors... can I say night and day? 3 docs came in today and asked how her night was and mentioned that she had a bad day for eating yesterday... I said, no she's eating, just not drinking. Apparently none of her food intake was recorded yesterday. Whatever.

Anyway, he said, "Well I'm glad she is eating but she can't go home until she drinks." I about fell out of my chair! Hallelujah a voice of reason! I just smiled and said "OK". He turned off her IV but promised if she did not drink today it would be turned back on tonight so there's no risk of dehydration. Ya think?! I didn't know whether to cry or laugh!

Anyway, she also had an amazing nurse today who really confirmed I did the right thing yesterday and said she has never heard of ENT sending kids home until they drink something. She was baffled. She said it was pretty obvious they were all talking about me and trying to get us out of there and kind of joked that they probably feel threatened because I know my kid better than they do. Heaven forbid @@.

The good news is, Kenn drank 3-4oz today. It was slow going, but at least it was something. The doctors are supposed to be coming back up tonight to tell me if we go home or if she needs one more night of IV fluids. I'm really ok either way now that we're through the weekend because I know her Ped will see her every single day if I ask her to. At least I know she has the ability to swallow now!

The hospital administrator came back up too and I asked again about the inhaler and she said the only way Kenn could get a consult with the pulmonology doctors is if ENT ordered it and it's obvious that's not going to happen since the witchy one already told me she wouldn't do it. GRR So I will ask her ped for that too. The admin also told me to follow up with the patient rep office for sure because nothing will be done if I don't file a formal complaint.

Now I just have to deal with her post op appointment. I wish I could take you all with me because facing these jerks again just makes me want to curl up in a little ball. I wish I could bring my nurse from today with me! Or anyone in the respiratory team, they've all been amazing.

Anyway, that's my update... I'll write again, maybe from home.

Saturday, August 26, 2006

Still here...

Well they tried to send Kenn home again today. The ENTs here have just been totally unwilling to listen to my concerns about her not drinking and about her spiking fevers. I finally had to speak to the administrator of the hospital and she said we don't have to leave until I'm ready.

Kennedy is still not drinking anything. I really feel that once she is off IV fluids, she's going to head towards dehydration, fast. They still refuse to run bloodwork to look for a source for her fevers. They are frustrated with me and I am frustrated with them. Thankfully we have good nurses tonight and her respitory therapists have all been wonderful.

I'm going to go ahead and let them send her home tomorrow... the doctors aren't willing to help, so what is the point of being here? I figure if she gets sicker I will take her to our local ER. They'll admit her there if need be.

The Administrator is being very nice and trying to help any way she can, but when the doctors are being rude and refusing to help or even listen, it kind of trumps everyone else. The nurses hands are all tied. *sigh*

Anyway, just pray Kennedy DRINKS, even a little. She took about two sips of milk tonight, not even a tablespoon worth I would say. A few more days and we'll be allowed to give her a straw again and I think that will help.

I'll write tomorrow when we get home.

Thursday, August 24, 2006

Hanging in there... sort of...

Kennedy had a pretty good night... her fever broke and she slept really hard. I was continuing to use the blow by oxygen every time her sats dropped, but the Fellow ENT cut that this morning. She's still in the low 90s and the alarms are going off every ten minutes but they seem to think that's ok... whatever.

Her temp is back up to 103 today. They've taken her off the codiene and are giving her regular tylenol for fever control because she is completely lethargic. She still won't eat or drink anything.

The Fellow said that as soon as she can drink one medicine cup full of fluid every hour they will send her home... over my dead body! Two teaspoons of fluid an hour hardly seems like enough.

They refuse to run blood work to look for any further infection and says the amoxicillan will cover whatever is causing the fever and apparently, they have no problem with sending her home with a 103 temp.

Anyway, I have to get back to her, I just wanted to let you all know what was going on so you can be frustrated with me.

Kennedy update... Please pray.

UPDATE 9:02pm CDT
Kennedy spiked a 104 temp earlier this afternoon and they can't seem to get it down. They still have her on tylenol with codiene but said they can't give her motrin because of risk of bleeding so close to surgery. They are doing yet another chest xray tonight and then a catheter to check for a UTI. Her nurse is wondering if she may have a sinus infection... her nose and throat are full of junk. She ate more jello tonight but still won't drink anything. Pray this fever goes down and/or they figure out what is causing it. I will update again in the morning.

**************************************
2:00pm CDT
Kennedy had a rough night last night. She had some trouble breathing and her O2 levels were all over the place. They upped her oxygen, suctioned her out, and did a chest x-ray just to make sure she hadn't aspirated. Her lungs are clear, Thank God! Even with pain meds she woke up screaming every 30-45 minutes. It was a long night for both of us.

Finally around 5am she crashed hard for about 3 hours. When she woke up she was able to sit up and took interest in her Signing Time DVDs and her toys. She is now able to cough without crying. which is a VERY good thing! She still won't drink anything, but she has eaten jello and a little bit of pudding. She is off the oxygen now while she is awake but once she goes to sleep her O2 drops again and they have to put her back on. Hopefully they can wean her off of that tomorrow. She still has a low grade temp that they are fighting with amoxicillan, and she is on Codiene every 4 hours for pain. Hopefully she will continue to improve tonight and tomorrow... night time is always bad for her, so send up some extra prayers before bed!

Wednesday, August 23, 2006

Out of surgery...

Kennedy is out of surgery and doing ok... the surgery went really well, totally routine, no surprises! She was in a LOT of pain when we got to recovery so they gave her morphine to keep her comfortable. Her O2 dropped quite a bit... they feel it's due to swelling, so they put her on oxygen and kept her in recovery until she stabilized. She is now in a room in the PICU and they hope to wean her off the oxygen tonight or tomorrow. She's on quite a bit though and when she pulls it off her O2 drops down to the 70s. She is still sleeping for now and Frank is with her, so I thought I would drop by and update. I'll update again either tonight or tomorrow. Thanks for your continued prayers!

Tuesday, August 22, 2006

T&A Surgery tomorrow!

Tomorrow morning Kennedy goes in for surgery. For those of you who keep up with this page, you know the details... for those of you who don't... read the archives sheesh!!! (Kidding, only kidding.) :o)

Kennedy is 2 1/2 and is having her tonsils and adenoids taken out. For a typical child this is a one day in and out procedure. For someone with Kennedy's medical history, things are a little more complicated. She will be in the PICU for 24-48 hours and then in a regular room for 3-7 days afterwards. They are concerned about swelling post op and need to keep a close eye on her.

I'm trying hard not to be nervous... I know, I know, I KNOW that God is in control. I KNOW He's working on those doctors even now, making sure they get a good night's sleep and their minds are clear for tomorrow... but even though my heart knows this, there's still that "what if?" that nags... this is Kennedy's 7th surgery and it just never gets easier.

SO pray for my sweet girl tomorrow... pray that nothing odd happens during surgery, pray that she is not in too much pain afterwards, pray that there is no swelling in the days following surgery, and pray that they DON'T let her go home until she is absolutely safe.

Remember Kassidy and Kameron too... they will be staying at Grandma's house and they'll be busy with school, but I know they are going to miss me and be worried about Kenn.

One of my best friends in the world drove up from Georgia yesterday to be here for Kennedy and for me... she spoiled me today and did a great job keeping my mind off things and I know she is going to be a tremendous support for me tomorrow. Thanks, Amy... it means more than words can say that you are here.

AND for those of you who don't know yet, Frank is home from Iraq! He was not scheduled to be home for a few more weeks yet but they let him come home for this surgery and of course now he can stay. He was there for 11 1/2 months and it's so good to have him home!

I will update here ASAP tomorrow so check there for updates... thanks again for all your prayers!!

Friday, August 11, 2006

More medical stuff...

OK so here's lots more info to digest! LOL The anesthesiologist appointment went ok. At first they were saying they would have to postpone surgery because of her having pneumonia. I told them she is FINE now and surgery is not until the 23rd and she said they usually like to wait longer than that after an illness. I told them if they waited too much longer it would be time for her to get pneumonia again! SO She called someone, not sure who, but they decided to go ahead and keep the surgery scheduled. If she gets sick again between now and then though they are going to postpone. Lovely.

I asked about the MRA and she agreed it was a good idea but she couldn't order it and told me to call her ped back. SO I called her ped (who I just love) and she called back and said she's been looking more into MOYA MOYA and thinks there's a good chance Kennedy has it. She's referring her to a hematologist to rule out any bleeding disorders first and then he'll order the MRA or whatever tests she needs. She called back today and asked if I had heard from them yet (I haven't) and said that it may not be an MRA that they do because of her higher chances of getting leukemia they want to keep radiation at an absolute minimum (which I appreciate!). She promised something would be done before surgery though.

THEN last night her new GI called me, this is the first time I've talked to her since her swallow study. She confirmed that Kennedy is aspirating which I already knew. I told her that even though I'm thickening her liquids she still got pneumonia again and she said to start thickening them MORE and if she gets it again she wants to start talking about a G-tube which goes right into her stomach and she would get no liquids by mouth at all. :( She would HATE that! Because there are no signs of Kennedy refluxing, her GI is saying the fundoplication surgery or reflux meds would not help her. SO PRAY she doesn't get pneumonia again!

The GI went on to say, "Then of course you know she's borderline celiac's disease." Ummm NO! Her old GI told me she does NOT have it. She said "You're right, she DOESN'T have it right now but she's very borderline and if you don't start modifying her diet now she's going to end up with it." SO I am starting to cut wheat, rye and barley out of her diet. Fun!

Monday I go meet with Kennedy's developmental ped. He's been researching MOYA MOYA too and wants to talk to me about it. SO I will update again then, I'm sure!

Kass and Kam both had a great first day of school. They both like their teachers and are making friends fast. Kennedy starts Monday! YAY!

OK guess that's it! Keep praying!

Monday, August 7, 2006

One big update!

Ahhh I am SO sorry it has taken me so long to update! Things have just been crazy here!! We have had an eventful summer! We went down to Chattanooga for the 4th of July, it was a lot of fun! I have lots of pictures I will post soon!

July 20th we went to the NDSC convention. Kennedy and I went last year to the one in Anaheim, CA. This year it was in Atlanta, GA. My mom and all 3 kids went with me and I went as an exhibitor to sell things from my store! I had a lot of help from two of my friends and we did fabulous and had a GREAT time too! I will post pics from that soon as well.

Kassidy starts first grade on Wednesday and Kameron starts pre-Kindergarten next Monday. They are both VERY excited to be going back! Kennedy will start going to a pre-school as well next week. She will go 2 days a week for 2 1/2 hours each day. The center is a mix of typical and special needs kids and they will work with her on her developental and social skills. This is the same school Kameron went to 2 years ago and he did so well there. I'm excited for Kennedy to go!

OK onto the medical crud... we finally got Kennedy into a new GI who actually listened to my concerns! Imagine that?! I told her that Kenn's therapists were concerned she may be aspirating due to her high fevers out of the blue and her constant bouts with pneumonia. (I mentioned this to her LAST GI too but he blew me off.) This GI ordered Kennedy a swallow study for the next day... turns out... she's aspirating! (Surprise, surprise) Fortunately, she is only aspirating thin liquids and not food so for now they told me to thicken her liquids with yogurt. Turns out Kennedy's tummy can't handle yogurt :(. We tried baby cereal which made a terrible mess and then someone turned me on to this wonderful thickening gel! It's called Simply Thick and comes in pre-measured packets... one packet for every 4 oz of liquid. It's tasteless, odorless and not grainy! SO All Kenn's liquids are now a milkshake consistency. She doesn't seem to mind, thank God!

However! Last week Kennedy very rapidly got very sick. She went from totally fine to a high temp and not being able to lift her head up within 2 hours. I took her right to the doctor and sure enough she had Pneumonia... again. So they gave her a shot of rocephin and put her on oral antibiotics and she's bounced back rather quickly. They are assuming she's aspirated again, so I have to talk to her GI about what's next. A PH probe (measures PH levels in the esophagus) and a milk scan (also called a scintiscan) which measures how many times she is refluxing per hour, has been recommended. Ultimately there IS a surgery to correct aspiration, but they are hoping she'll grow out of it first.

Kennedy's Tonsil and Adenoid (T&A) surgery is still on for August 23rd. She will be in the PICU for 1-2 days afterwards and a regular room for 5-7 days after that due to her vascular anomalies and the risk of bleeding.

Speaking of those anomalies! A friend was doing research online about MOYA MOYA which is a stroke disorder. It's VERY VERY VERY rare in typical children (Kennedy's ped didn't even know for sure what it was), and it's VERY rare in kids with Ds... but not as rare as with typical kids. (Still following?) Anyway, the studies my friend found says that vascular anomalies are a HUGE sign of this disorder... Kennedy has 3 that have been found already and her doctors are assuming there are more. There are also some other factors in there that point to the fact that it's possible that Kennedy has MOYA MOYA. Another friend's daughter has it and she had a major stroke a few years ago and lost all feeling in the left side of her body. There is a surgery to correct it, it's brain surgery, but you have to diagnose it first. The way to diagnose is an MRA (like an MRI but a little different... the A stands for Angiography and it's an MRI study of the blood vessels). Kenn's ped said she should absolutely NOT have surgery until this test is done. SO on Thursday we go for pre-op and will be discussing this.

Whew! and here you thought I've been sleeping all summer! LOL Needless to say, please keep Kennedy in your prayers... for all this stuff. Just one big inclusive "Watch over Kennedy, God" is probably easiest... He can figure out the details Himself! ;o) I will update again on Thursday when I know more.

Friday, June 30, 2006

Sleep Study Results

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

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

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

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

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

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

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

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

Sunday, June 25, 2006

It's signing time with Kassidy and Kennedy!!

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


Not all their clothes match, I swear!


Baby


Car


Cold


Cookie


Cracker


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


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


Dog


Kitty


Fish


Eat


More


Hungry


Thirsty


Sorry


Yes


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


All Done!


Good job!


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

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

Thursday, June 15, 2006

Summer Update

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

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




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

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

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

Monday, May 15, 2006

HAPPY BIRTHDAY KENNEDY!!!

Another year has flown by and here I sit on the eve of Kennedy's second birthday. Wow. What a year! This tough little girl continues to amaze me every day on every level. She has endured several surgeries and illnesses and has overcome issues that shocked even the medical community. As she faces more in her near future, she continues to be my source of strength and determination. I see her beat all the odds stacked up against her and I just marvel at the wonderful gift the Lord has given me in my daughter.

Just as last year, I'm finding Kennedy's birthday to be bittersweet. Excitement over her turning two is mixed with the sadness I felt the day she was born and along with that comes inevitable guilt over that sadness. Will it be like this every year? Maybe. But it serves as a reminder of how Kennedy has changed me... how she's made me a better person and a better mom. Also with the excitement of turning two comes the sadness of turning two! My baby can't be two, can she? As she sits here tearing things out of my drawer and throwing them onto the floor, I can’t help but realize that... yes... she's definitely two!

One of the common misconceptions about kids with Down syndrome (that parents in the Down syndrome community love to joke about) is that they are so sweet and so happy. In the last few weeks Kennedy has shown me that she is stubborn and defiant and ornery... you know, two! But she is also loving and funny and, yes, sweet and happy... just like every other two year old! She is asserting her independence more every day and letting us know her likes and dislikes. She loves other people and loves attention (I'm not sure where she got that from); she dislikes wearing socks and eating olives. She loves baby dolls and books and playing ball; she dislikes stacking blocks... especially when someone else wants her to do it! She loves to be chased by her brother and cuddle with her sister. She loves to try to scare people and make them laugh. She loves to be loved.

Kennedy's birth was surrounded by uncertainty and fear, but because of her we've learned to rely on God for peace and understanding and assurance that He really is in control. He knew what He was doing when He made Kennedy... for she is fearfully and wonderfully made (Psalms 139:14). She is perfect in God's eyes and in ours, and I am so thankful that God trusts us enough to take care of her and love her.

Happy Birthday my sweet Kennedy! I am so excited to go through the Terrific Twos with you!

Wednesday, April 26, 2006

Kennedy medical update!

OK first off, Kennedy is getting yet another new pediatrician. Her ped misdiagnosed yet another staph infection. It wasn't MRSA this time thank God, but she was broken out in spots all over her little body. He tried to tell me it was Eczema. @@ Anyway, I've heard wonderful things about this new doctor and I'm very excited to meet her!

Meanwhile, at Vanderbilt, Kennedy had her upper GI yesterday. They did this because during her endoscopy last month they found she still had food in her stomach. She hadn't eat for 13 hours, so she shouldn't have. Her GI doc was concerned that maybe her stomach is not emptying right. All that to say, I'm still waiting on the results. LOL But if I don't hear from her GI soon I'll give him a call.

And back at Blanchfield today, she went to the Cardiologist and he decided that we need to get Kennedy's surgery on her vascular ring done sooner rather than later. As of the last time we saw him he wasn't TOO overly concerned and we decided to wait until Frank gets home. Now he's saying that may not be what is best for Kennedy.

SO he put in the referral for a Vanderbilt cardiologist (right now she sees a military one) and first they will do a heart catheter and run a bunch of other tests (I know another sedated echo for sure... which hopefully they'll do the same time as the heart cath). We should get the referral in 7-10 days and then we can go from there.

Kennedy is up to 19 lbs 4 oz and is 29 inches long :D.

ALSO all 3 kids had dentist appointments today and their teeth all look great! NO Cavities! YAY!

Anyway, so some good news, some nerve wracking news and some news unknown... what more could you ask for? LOL I'll keep you updated as I know more!

Sunday, April 16, 2006

Happy Easter!

We hope you all had a blessed day and had time to reflect on the real meaning of Easter.

Dare I say it? We are all WELL here... no one's sick, no one's hurt, everyone's happy... now if I were superstitious I would say "knock on wood", but I'm not, so... ;o).

Two weeks ago I was asked to speak at our local MOPS group about faith and how God can bring us through tough times, so of course I spoke about Kennedy. I thought I would share what I wrote with you all. I hope you enjoy it.

My name is Renee Garcia, I am 27 years old. I am an Army wife and a mother of three. I was born and raised in California and became a Christian when I was 8 years old. I went to Christian schools from Kindergarten through college where I met my husband. We were married my sophomore year and a month and a half later found out we were expecting our first child.

Our daughter Kassidy was born in November 1999, and exactly 2 years later we had a son, Kameron. We had a rough first few years in our marriage. Money was tight and my husband Frank was bouncing from job to job. In 2002 he had the idea to join the Military, so we prayed about it and started looking into our options. A few months later he was signed up with the Army and getting ready to go to boot camp.

While he was at AIT in Virginia we decided it would be a good time to try to get pregnant with our 3rd child. We hadn’t yet been able to actually plan a pregnancy, and we wanted our kids close in age, so we thought now was as good a time as any. He came home one weekend for a break and a few weeks later we found out that our baby was on the way. Life was perfect. We thought we had it all figured out.

After AIT, Frank came to Fort Campbell and was sent directly to Iraq. When he got home he came and picked the kids and me up and we drove half way across the country to Clarksville to start our new life. We settled in quickly, made friends, found a church home and waited for the arrival of our second daughter, Kennedy. Life was good. Everything was going according to our plans. I had dreams of my 2 daughters being best friends. I knew they would look alike and I could dress them alike. They could do each other's hair and play with dolls together and one day share clothes and secrets and talk about boys! They would be each other's best friends. Kassidy and Kennedy would have the sister I always wanted in each other! I couldn’t have been more excited!

Before we knew it, it was May and I went into labor. We called our friends and family from the hospital and we were ready to begin our journey as a family of 5! A few hours later Kennedy was born. Every thing went fairly well and we settled into our room and started making the phone calls telling our loved ones she had arrived.

Then a pediatrician walked into our room and sat on the end of my bed. That moment was the last time I ever felt "normal". The next words that came out of her mouth will forever be etched in my mind. "Mr. and Mrs. Garcia, we have reason to believe that your daughter has Down syndrome." I immediately thought, "No, it's a mistake. I'm 25. This kind of thing doesn’t happen to 25 year olds, it happens to 40 year olds!" My next thought was "My baby’s going to die." As the doctor pointed out Kennedy's physical features that made them think of Down syndrome, my heart and my dreams for my kids shattered into a million pieces. I knew that nothing would ever be the same again.

I cried for what seemed like hours. I just knew that my daughter would never have friends. She wouldn't go to her prom, or college or get married. She wouldn't play sports or read books or be able to tell me she loves me. I didn't even know if I should name her "Kennedy". Kennedy was the daughter that I dreamed about. She was the little girl who would be a miniature version of Kassidy, the little girl who would want to date her big brother's friends. That baby was not the baby I had given birth to. That was not the baby I held in my arms. This baby was someone else. Still, everyone already knew her name, so we signed the birth certificate and moved on.

Beyond my grief over my daughter, I had to deal with the grief of my family and friends. Some tried to be strong for me. Others cried with me. I cannot count the number of times I heard "God will never give you more than you can handle." I remember thinking "Well that’s a lie!" After we got out of the hospital my mother and I scrambled for any information on Down syndrome that we could find. Unfortunately, most books were outdated and depressing. Things were not looking good.

Along with my tears came anger. How could God do this to me? He knew all my plans, He knew the baby that I wanted. How could He do this to her? Didn't He know all the struggles she would go through? Didn't He know that she was going to have to work SO much harder than everyone else to do things? I just didn't understand.

During the next few weeks Kennedy and I got to know each other. While I mourned the daughter I was expecting, I was fascinated with the daughter I had. She was kind of cute, and she made faces like Kameron. She loved to snuggle in next to me and sleep. It wasn't long before I fell head over heels in love with her.

Kennedy is now almost 2 years old. She is beautiful and smart and funny and silly and very stubborn. She steals Kameron's toys and plays with Kassidy's dolls. Every time I give her a kiss she yells "OW!" She does have to work harder to achieve things that comes so easily to other kids, but that makes every milestone a celebration in our house! I am so excited about her future. I can't wait for her to go to school and play with her friends, I can't wait for her to learn to read and write, and share secrets with her sister, and one day get married. I can't wait till the day that she tells me that she loves me.

When Kennedy was born I had to let go of one set of dreams, but God showed me that I can have new dreams. In Kennedy, He has given me a love so pure, so unconditional that it's beyond anything I can even comprehend. It's been a hard road for Kennedy medically, we have almost lost her twice, but she has shown everyone that she is a fighter. God has her here for a reason and every time someone new falls in love with her, every time her story touches a life, that reason becomes clear.

I often think about that line "God will never give you more than you can handle" and I think I was right: it is a lie. I could never have handled this on my own. It is with God's strength that I get through every challenge in my life. The good news is that God will never give me more than He can handle, and with Him guiding me I know I can overcome anything that comes my way.

I have a lot of guilt from those first days of Kennedy's life. When I should have been rejoicing, I was hurting. When I should have been celebrating, I was mourning. But now I wouldn't change Kennedy for the world. She is perfect just the way she is... while I am sorry for the sorrow that surrounded her birth, I’m so glad I have the rest of her life to make it up to her.

As for my plans and that baby I dreamed for? I just thank God that in His infinite wisdom He told me "no". He knew that His plans were more perfect for me than I could have ever dreamed. Sometimes God's greatest gifts truly are unanswered prayers.

PS here are some recent pictures! Easter ones are at the bottom, enjoy!
All these toys and she plays with a box!

Here's your bottle baby, drink it all!

Time to burp!

OK My turn!

OK, I got in... now how do I get out?!

OK so the other night I was sitting here at my desk and I saw Kenn in the living room crawling back and forth, back and forth. I thought "what the heck is she doing?" FINALLY I went out to check and found this:
She was crawling over to our shoe rack, grabbing a shoe, crawling back and putting it on our table! LOL

I think I'll put these cups up here too...

Oh stop Mom! You're embarrassing me!

Fun at the park

I do believe she is calling me a loser! LOL

We're going on an egg hunt!

Oh look, I see one!

That one's mine! Get away!

Got it!!!

So what am I supposed to do with this thing??

Hang on, it's dirty right there.

A fish kiss from me to you!

A visit with the bunny!

Kass and Kam checking out their stuff from the bunny. I'm no fool, I slept in!

My pretty Easter dress!

You're so silly!

The 3 KJ Kids :)