Friday, March 31, 2006

And down goes the mommy...

Well, you knew it was going to happen, right? Three sick kids, one mom taking care of them, statistics say I have to get sick too! SO never being one to argue with statistics, I'm sick. *bleh*

My throat doesn't hurt but every other bone, muscle, and ligament in my body does, so I'm assuming I have mono and not strep.

Fortunately Kameron is feeling pretty much better. He hasn't had a fever since Wednesday. Kassidy is still spiking temps and complaining that her legs hurt. I'm assuming it's fever related. Kennedy is getting back to her old self again, slowly. She still spikes the occasional temp as well. I'm just waiting for those antibiotics to kick in now.

Thank God for my next door neighbor! She's gone to Wal-Mart 3 times for me now. Once we're all well I'm going to buy her a gift or take her to dinner or something!

Anyway, I'm off to my couch. I'll update again when I can.

Wednesday, March 29, 2006

And the last KJ bites the dust...

Kassidy woke up this morning, came in and said "My throat hurts." AHHHHH I made her an appointment for this afternoon. By that time she was lying on the couch miserable.

SO We get to the doctor and Kameron (who ONLY has Mono) says "My throat hurts too". So I asked the nurse if we could get him looked at too.

We finally get back to the room and I reach down to brush Kenn's hair out of her face and she's on fire! So I ask that nurse if we can have her looked at TOO.

SO here's the final count:

Kennedy's labs came back from Monday, she has Mono and the Epstein-Barr Virus also known as Chronic Fatigue Syndrome. This just means that she'll always be susceptible to Mono and the doc said she can get it back at any time. Then she still has strep and tonsillitis as well. Her temp was 103.9 in the office and since she's been on antibiotics since Monday he decided to switch her to something stronger.

Kameron's temp was 100.9 in the office. They did a strep test which came back negative, thank God! So we're still just dealing with Mono with him.

Kassidy's temp was 102.8 in the office. They did a strep test and a Mono test. She does have strep but not Mono. He prescribed her antibiotics as well. The good news is, she should be well in time for school next Monday.

Are you confused yet? So far I'm hanging in there. I have a little bit of a sore throat, but I'm trying to talk myself out of it.

Anyway, that's the update for today... keep all my babies in your prayers!

Monday, March 27, 2006

Down goes Kennedy...

I took Kennedy back to the doctor today. I wasn't going to, because really why bother if they're just going to tell me it's a virus? But they called me and said they wanted to see her, and I'm glad they did!

Kennedy has strep throat, tonsilitis, and they're pretty sure she has mono as well. We're waiting on the test to come back. They are also testing her for Epstein-Barr Virus which is a chronic condition... the symptoms are strep, tonsilitis and mono... *sigh*. We'll find out about that tomorrow.

He's also referring us to an endocrinologist to see about all her high fevers. He said something could definitely be out of whack with her inner body temp control.

Anyway, guess that's it for now. Keep Kennedy in your prayers!

Sunday, March 26, 2006

Kameron update & Kennedy

Well, it's been a long couple days! Kameron is doing ok. His temp is low grade now and he's just kind of... blah. He'll get up and play for a few minutes and then come lay down for awhile. He's been sleeping off and on until Kassidy wakes him up. She is so bored!

Kennedy decided she didn't like Kam getting all the attention! She woke up from her nap yesterday with a 103.9 temp. UGH I was sure she had Mono too so off to the ER we went. They ran blood work, did a chest x-ray, and a urine culture. Everything came back clear. So they chalked it up to a virus and sent us home.

She had a bad, bad night. Her temp got up to 104.9 in the middle of the night. I've been rotating tylenol and motrin and wiping her down, but I can't seem to get her temp below 104 today. She's completely lethargic, but she's drinking ok and has no other symptoms. I had her doctor paged but he said I'm doing everything I can do so there's no point on taking her back to the ER. *sigh* I feel so bad for her, she's just miserable!

Needless to say I'm rescheduling Kenn's upper GI tomorrow... I am supposed to cut all fluid after midnight tonight, and I can't see doing that with her temp so high. So, I hope they're not mad tomorrow morning when I call and back out!

Anyway, pray for Kameron and Kennedy! Pray for Kassidy and me that we stay healthy, and that ALL of us get a good night's sleep tonight. I spent a lot of today lysoling my house... we need to get the cooties out of here!

Friday, March 24, 2006

Prayers for Kameron

Hello everyone!
I know this is Kennedy's page, but she's doing great right now, so I am writing to ask for prayers for my son, Kameron.

For those of you who don't know us all that well, Kameron is 4 years old and a healthy kid! He has a diagnosis of pervasive devopmental disorder not otherwise specified (PDD-NOS) which falls under the Autism umbrella. He is going to school and doing amazingly well and is so, so smart!

Anyway, Kameron is sick. Last night before dinner he was sitting on our stairs and Kass said "Mom! Kam said he has a headache." So I told him to go lie down. I checked on him a few minutes later and he was sound asleep and burning up! I took his temp and it was 104.4. I gave him some Motrin and he went right back to sleep.

He woke up this morning and said his ear hurt really bad. He's had tubes since July and has not had one infection since but I thought maybe one fell out or something. So I took him to the doctor and he said his ears are fine and he probably just has a virus. His tonsils were huge, but he did a strep test and the rapid one came back negative, so he didn't seem worried. His temp was 102.1 then and he had just had motrin not too long before.

He came home and ate a few bites of lunch and then laid on my lap. I gave him some tylenol at 1:00 and about 40 minutes later his temp spiked back over 104 and he had a seizure. I've heard of febrile seizures but never actually seen one. It scared the wits out of me. After that he started babbling about a bad dream about play-doh at school and grandma was there and he can't go to the zoo. HUH?

SO I called the doc and they said to bring him back in. By the time I got there he couldn't even walk. He almost passed out right there. I had to carry him into the office and push Kenn in the stroller. There was a lady in the parking lot watching me and she just got in her car and drove away! GRRR

A nurse jumped up when she saw me and took Kam and they took him right back to a room. The doctor said that the seizure and the incoherent babbling was from the fever for sure (It was 103.9 there), and he decided to do some blood work.

He came back in and said, "Guess what? He has Mono!" He's FOUR! I didn't even know a 4 year old could get Mono! *sigh* SO they put him on prednisone and told us we have to ride it out. Kam was asleep on the table at that point and he woke up, looked at the doctor and said "I can't go to the park." and went back to sleep! I'm sure I'll laugh about that someday. The doctor just looked at me like "OK!"

He came home and has been sleeping off and on all evening. I have been rotating tylenol and motrin but I can't get his temp below 102. He woke up about an hour ago just screaming and crying saying his head hurts and he had another seizure. I called the doctor but he is still saying it's from the fever and he told me to put him in the bath. Kam can't sit up at all, I think he's dizzy. I've woken him a couple times for medicine and he just screams and says "My head hurts, I need to sleep." Poor baby.

Anyway, please keep Kam in your prayers! Keep Kassidy and Kennedy and me in your prayers as well, that we don't catch this, I've had mono before... it's NOT fun! I'm not too sure Kennedy would handle it well either.

Also, don't forget to pray for baby Camryn as well. Her website is here. She and her family need your prayers badly! Please sign her guestbook if you drop by!

Tuesday, March 21, 2006

HAPPY WORLD DOWN SYNDROME DAY!!

Today has been great! I think the poster went over really well at Kassidy's school and I had a great time reading to all those kids. I got lots of interesting comments and questions too... but most of the time they weren't about Ds! LOL I'm not sure if they got anything out of the story or not, but it was fun!

Anyway, here are some fun facts about people with Down syndrome!

Did you know that:

* 1 in 5 children with Down syndrome play a musical instrument? For children older than ten, that number doubles. 1 of 5 children with Down syndrome sing in a choir or vocal group, for children older than ten, it is every one in three.

* 2 out of every 3 children with Down syndrome like to draw and/or paint pictures

* Approx. 9 out of every 10 individuals with Down syndrome listened to someone read a book more than three times a week between the ages 2-5

* Approx. 7 out of 1o children with Down syndrome use total communication (sign language,etc) between the ages of 2-5

* Approx. 7 out of 10 kids with Down syndrome saw a speech therapist two or more times a week between the ages of 2 and 5

* Approx. 1 of every 3 children with Down syndrome older than ten rides a bike without training wheels

* 7 of every 10 individuals with Down syndrome older than ten participates on an athletic team through Special Olympics

* 2 out of every 5 individuals with Down syndrome participates on an integrated athletic team.

* According to their families, 3 out of 5 individuals with Down syndrome know how to operate a computer.

* 1 of every 3 individuals with Down syndrome older than ten reads the daily newspaper on his or her own

* 7 of 10 individuals with Down syndrome older than 10 read books on their own for personal enjoyment

* 1 of 2 children with Down syndrome go to school in a mainstreamed class.

* 3 of 5 children with Down syndrome participate in school activities that are open to all students.

* According to their families, 1 of 5 children with Down syndrome talk on the phone with friends more than three times a week. For children older than ten, that number doubles.

* 1 of 3 children with Down syndrome write email regularly

* 2 of 3 children with Down syndrome over age ten have a boyfriend or girlfriend!

* Approx. 7 of 10 children with Down syndrome pray on a regular basis.

* According to their families, approx. 7 of 10 individuals with Down syndrome imitate characters from a television program or movie

* Approx. 2 of 3 individuals with Down syndrome older than 10 prepare their own breakfast each morning.

* 3 of 4 individuals with Down syndrome older than 10 make their own bed in the morning.

* 1 of 2 individuals with Down syndrome (older than 18) work in a non sheltered workplace

* 1 of 5 individuals with Down syndrome (18 or older) lives on his or her own


I can't wait to see what Kennedy can accomplish as she grows! It's been such an exciting journey already!!

Here are some pictures of the poster I made (sorry the pics are crooked! LOL):

Left side:


Middle:


Right Side:





On a more serious note: There is a baby who needs your prayers. Her name is Camryn Owings and she is 2 years old. She woke up one morning with her eyes swollen and she couldn't move her neck. Her mom, Amber, took her to the doctor and they told her Camryn had the flu. The next week Amber took her back because she still couldn't move her neck, her eyes were worse and she was limping. They diagnosed her with strep and sent her home.

Finally Amber took her daughter to the hospital and demanded a CT scan... they found tumors behind her eyes and in her neck. She was admitted that night. Today tests came in that the tumors are all over Camryn's body... in her legs, in her arms, her chest, her brain... there is infection in her bones. The doctors are not hopeful, but are moving Camryn from Oklahoma to St. Judes here in Tennessee.

Please keep Camryn, her parents Josh and Amber and her sisters Katlyn and Riley in your prayers. I can't even imagine what they are going through. Please visit her caringbridge page and sign their guestbook.

Monday, March 20, 2006

Happy Spring!

Sorry it's taken me awhile to update. Thank you to those of you who wrote and asked about Kennedy, it means a lot!

Kennedy is doing well, she seems to be back to "normal" now... whatever that is! LOL Her upper GI has been scheduled for March 27th. This will hopefully answer the question of why there was still food in her tummy during her endoscopy. I'll post the results as soon as we know.

The good news is, she does NOT have Celiac's Disease! The bad news is, she's still showing signs of malabsorption and there doesn't seem to be a reason why... the upper GI may provide answers for this too. Here's hoping!

Frank is back in Iraq now and he's been moved to a new spot. If you'd like his new address, please email me. He's doing well and looking forward to coming home in September!

I hope that this first day of Spring brings better weather to you than it brought to us! It's cold and rainy here! Brrrr!

Tomorrow is World Down Syndrome Day! I am going to go read a story to all the Kindergarten classes at Kassidy's school and talk to them about Down syndrome and being friends with people who are different. Pray it goes over well!

That's my update for now, I'll try to keep up better!

Friday, March 3, 2006

So frustrated!

OK so Kenn's GI called back today and all her tests came back normal. SO he has NO idea why her poop is white and has basically thrown up his hands. He told me to double her laxative tonight and give her an enema for the next 2 days (because that makes sense with diahrrea, right?). I'm assuming he wants to clean out her system, but I'm really worried about dehydration.

He also said that if her appetite doesn't pick up soon that they would have to "take other measures" (meaning a feeding tube). I was SO mad. I told him (for like the 10th time) that her appetite is FINE, she WANTS to eat, but she CAN'T (is this confusing to anyone but him?) She was eating wonderfully till he did the endoscopy and he's not even considering the fact that he could have done something to her! *sigh*

Anyway, she did eat a little more tonight... still nowhere near a full meal or even half a meal for her, but it was a few bites more than last night... then she started wincing in pain and refused any more. She also had another white poopy diaper and her pain seems to be worse now than yesterday. I swear she almost passed out from screaming at one point.

So, I'm left with nothing. I'm going to try the laxative and enema and pray HARD she doesn't get dehydrated and pray she continues to eat a little more each day. It's times like this when God shows me I can't rely on anyone but Him. Kennedy's life is in His hands, and I just pray he will bring the right doctor to help her or just make this all go away!

Frank leaves for Iraq tomorrow morning. Please keep him in your prayers for safe travel, and keep the kids in your prayers too... it's going to be a hard day for them.

Thursday, March 2, 2006

Crazy few days!

Well, it's been a crazy few days. On Wednesday Kennedy slept for over 14 hours. I finally woke her up because I knew she had to be starving! Unfortunately she couldn't eat. It was impossible for her to swallow and she would cry in pain. She also had this horrible cough where she would gargle stuff and then scream. Nothing ever came out though. Makes me cringe just thinking about it!

I took her to her ped's office to get her next shot of rocephin and he wouldn't give it to her. He insisted she had the flu and it had nothing to do with the procedure. He had no problem with the fact that she hadn't eaten in almost 2 days and didn't seem concerned about the cough. UGH

So I had to call her GI doc three times after that before he returned my calls! GRR He said it was no big deal for her not to have the other shot of rocephin, that it was really the ER doc's decision to give it to her. He wasn't too worried about the fact that she is not eating either. He said maybe her throat is sore.

Last night we tried to give her the mushiest food possible and she still couldn't swallow it. On the way home Frank ran into Wal-mart and got her some baby food, pudding and applesauce thinking for sure she could eat that. Wrong! She gagged on it and couldn't swallow that either.

Then around 8:00 she started having diahrrea, but it is WHITE and it's not liquid... more like bread dough. (Sorry, too much information, I'm sure!) She SCREAMS and pushes and strains like she's constipated and then it shoots out everywhere. She's still going into coughing fits where she'll scream after. She's in SO much pain. She filled 4 diapers in 10 minutes this afternoon and she's wiped out afterwards.

SO we went back to her ped today (again) and he still insists she has the flu. Funny since she's had no more fevers. He said the dreaded sentence "She looks too good to have anything wrong." At that point I just started crying. She's almost died TWICE because she "looked too good to have anything wrong."

Anyway, her ped got a little exasperated with me and said if we insisted that he'd HAVE to admit her for observation. Yeah, like they're going to take good care of her under those conditions.

He put a call in to GI and they were able to see us at Vandy tonight. He agreed that the white poop is not normal. He didn't put anything into her during the procedure like barium that would cause it... just air.

He's thinking there may be some bruising where he took the biopsies which is keeping her bile from draining from her body, so it's just sitting there... toxic. Lovely!

SO tonight he ordered another chest and stomach x-ray. The chest x-ray was to see if anything was going on that would prevent her from eating. The stomach x-ray was to see if there is anything to cause her pain while she's pooping. He said that wouldn't go hand in hand with the bile theory. Tomorrow we have to be back there at 8am and they are going to do a stomach ultrasound which will pick up any bruising or something else that could be keeping her bile in, so we're just waiting for that.

She did eat a few bites for dinner, she was in a bit of pain, but she managed to get a little down so that's a start I hope! She still hasn't had more than those few bites in 72 hours though.

At least someone is finally saying "Let's see what's going on." Whether they think I'm totally nuts or not doesn't matter I suppose. One of these days, my hope is to have a doctor say "OK this is Kennedy, let's just assume if there's a slim chance of something happening, she'll be the one it happens to." HA! I can dream right?

Thank you for your continued prayers!

PS Frank is heading back to Iraq on Saturday, please pray that we have SOME kind of answer or that she miraculously gets better before then!