Appreciation

Tonight we were given a family gift card to Olive Garden.

By a family that we know, like a lot, but dont hang out with too often.

It was a COMPLETE surprise.

I am still unable to put into words my gratitude.

We are going to send a thank you note, but it will not convey just how much it meant to us.

She actually bought the gift card back in May when Jakson was having UTIs all the time, but we hadnt seen them in quite a while, so she dropped it off today. 

If, by any chance, she reads this...

You are a BLESSING!!!  I APPRECIATE all of you and your acts of love!!!!!!

THANK YOU!!!!!!

Family Questionaire

We did this last year so I'll ask the same questions again...

 

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Jaylee - Age 9 3/4

Best Friend: Katrina Gerovasilis

Favorite Subject: Math

Favorite Color: Yellow

Favorite thing to do: Go to Awana

Favorite TV show: Gravity Falls

One Thing you want: Webkin

Favorite Song: Home by Philip Philips

Favorite Food: Hash browns

What are you excited for: Start the saxaphone

Clothing: Lg/XL 12/14

Shoe: 6 kids

What you want to be when you grow up: Xray Tech

Where you will live: Australia or Lititz

What do you want to be for halloweeen: Burglar

 

Jaylee spent the summer babysitting Jackson and physically maturing - who knew puberty would start this early?!?  She's been making all sorts of new friends from all walks of town.  She's trying new things out too... her tastes buds have changed to prefer wheat bread, NOT honey turkey and oatmea, she tried out for the Chritmas play at Poppop s churhc, and she's starting instrument lessons - either sax, violin or clarinet.. She got to spend the week in Seattle without us and thoroughly enjoyed herself.  She's completly mastered her bike and Razor scooter, even doing tricks. She choreographs dancess for her and her frends at our house.  She loves to be playing games on the computer or watching Disney TV shows... Good Luck Charlee, Code 9 (prank show), Gravity Falls, Sponge Bob and Jessie.  She enjoys going to church with Poppop - Nan became her sunday school teacher last week.  She enjoys Awana on Weds nights and can't wait for summer camp again next summer. Some of the friends that come over - and we have playdates every other day - are Katy Kramer, Shannon Morrissey, Haley Delgotto or Kat (though not very often since we live far now).  Jaylee enjoys following rules - she wont even let me throw my gum out of the car window, for fear of the police.  She is extremely reliable.  She is very confidant... she knows that she will catch the pig again next year, she likes to adore herself in the mirror, and she has a night time ritual where she brushes her teeth and puts up hair before bed. She picks out all of her clothes, I can't even shop without her anymore!

 

 

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Jennibelle - Age 7

Best Friend: Serenity Martin

Favorite Subject: Lunch

Favorite Color: Purple

Favorite thing to do: Play with my friends

Favorite TV show: Gravity Falls

One Thing you want: New Teddy Bear

Favorite Song: Girls Just Want to Have Fun

Favorite Food: Ice Cream Cake

What are you excited for: 2nd grade

Clothing: 7

Shoe: 13.5

What you want to be when you grow up: Hair Stylist then a Dr

Where you will live: Meg's House

What do you want to be for halloween: Skunk

 

Jennibelle has grown more into herself this year.  Her front tooth finally fell out, yet we're waiting for the big tooth to show any signs that it's there.  She really enjoys sleeping in late, rolling all over her bed, sleeping wiht someone else, and snuggling.  Jaylee often cons her into sleeping together every night.  Jenni is full of energy all day long and full of excitement for everything that she does - but usually only for a short time. She started gymnastics last week and asked if she could go only half the times.  She is one of a kind.  She is a Mama's girl - right now she needs her Mama and me time, or she breaks down quite easily. She likes to snuggle up and watch reality singing shows with me!  She loves to pick up her brother, and he usually enjoys it! She and her friend Allison can talk and talk and talk for HOURS!!!!  She hangs out mostly with Layla Bryan, Allison Zimmerman, Natalie Wenger and Serenity.  She makes friends quite easily!!



Fun Jackson

This post is inspired by a fellow kidney Mom who blogged the other day about all of the healthy milestones that her son is hitting. And then it hit me...

I have blogged about every illness so that I keep things straight, but I have not kept the fun healthy exciting things straight... Boo on me!!!

 

So....

 

Jackson Lee is EIGHTEEN months old already!!!  So awesome!

Where do I begin???

Well, forget all of those Drs that said IF he survived he would be disabled and retarded and slow...

He is by far advanced... physically, talking, communicating, understanding, and even emotionally.

*One of his favorite things to do the past weeks is jump. Jump like a frog, jump on Dad, jump off of the couch arm, jump on the tranpolene... he doesn't care where or what on, as long as he is jumping!  

*He still loves to watch youtube videos but now he can ask for which ones he wants bby name... his fav three are still Elmo and I know it, Bodcious the bull, and "Neighs Neighs" from Texas.

*He enjoys books... esp books of the family where he can yell (because he only has one volume... and it is yelling loud) the names of everyone.  We often read Moo Baa Lalala and he fills in all the animal sound blanks.  He even thinks he's funny when he says "lalala" at the wrong times and then he laughs.

*He is still not much of a eater.  He likes to put non-food items in his mouth sometimes and when I ask "what is in your mouth" he always replies "CHIPS!" even though he knows darn well that it is not.

*He is happy outside... even if he is doing absolutely nothing.  He looks for bugs, splashes in the driveway puddles, climbs and slides on his jungle gym, swings on our laps, begs to ride the "TRACTOR!!!!!" (his most favorite activity), watches the planes and helicopters and more.  All while staying right in the yard... hasn't yet wondered to the barn, in the fields, or down the driveway... yet.

*We've never had baby gates on the stairs, which is probably why he mastered walking up and down them a few weeks ago.

*He's just starting to ply with my smart phone...he's enjoyed calling Dada for weeks now and yelling "hello" and kissing the phone, but now he's learning how to move pictures and play games.

*Jojo's Circus and Spongebob are his favorite shows, though the Sesame Street Sing Along VHS we bought for a quarter last weekend is the best quarter we ever spent.

*He conts to fear the stethoscope and is well aware what is happening when we head into the lab.  He's so strong to hold down anymore!

*His words are too many to count but my favorite is his "BYE BYE" I'll have to get it on tape!!  His others are... Jaylee, Jennibelle, Dada, Mama, Hello, Poppop, ,Nan, Cole, Tractor, Bird, Grandma, Grandpa, Night Night, Baba (bottle), Duck, Dout (outside), Strawberry, Wawa (water), Splash, Cheese, Chip, Cracker, Stinky, Booboo, "One More" (with 1 finger), Eye, Nose, Ears, Teeth, Hair, Car, Juice, Groundhog, Deer, every animal noise, Up,

*For months now, he has peed on command (I thought this was normal for boys.) and now hates to have a dirty diaper... he tells me "buttbutt" and grabs his behind. 

*I used to have to rock him to sleep each night but now he wants to do it all on his own.  He turns on his music, we lay him in bed, give him his bottle adn he gives us hugs and kisses and says Night Night.  He'll usually wake once for a water bottle and then 12 hours later he's happy to wake for the day. Sometimes at nap time he'll play in his crib (mostly upside down) for an hour or so before he zonks out!  For the past 2 months or so, he's been napping form noon to 3.

*He absolutely positively adores his sisters.  And they adore him!  There was 2 weeks (end of July-ish) where Jackson was biting and hitting and pulling hair.  It was mostly to Jenni, which hurt her feelings, but the two of the seem to be the closest friends-wise so it made sense to me.  Jaylee was his babysitter all summer and did an excellent job!

*Right now he likes to tell us that he has a booboo on his foot and ask us to kiss it.  And he has upped his wrestling to include pulling us by our shirts and "throwing" us into things... leaves him laughing hysterically.
I'll add some videos tomorrow. 
This has been fun.
I'll do a blog on each of the girls this week too!!

 

CHOP

karate....    CHOP!!!

 

haha... we took Jackson to CHOP for a second Uro and Nephro opinion.

It was a nightmare just trying to get he appt and get it paid for... literally HOURS on the phone with hospitals and insurances.  But it only took us 1 1/2 hours to get there... so we were 1 1/2 hour early!!! Whoops!  It gave Jackson time to play.

 

At Uro we met with Kristen a NP who took a quick history and peek at him and then she brought in Dr Shukla.  "Unfortunately we didn't receive his records, only his films..."

aaaaaaaaaaarrrrrrrrrrrrrgggggggghhhhhhhhhh

I spent hours confirming that everything was sent and received.

 

So, we continued,  He feels that everything has been done right up to this point, but thinks that it would be good to have a Urodynamics Study done to check Jackson's bladder pressures and also to have Mag 3 Renal Scan with Lasix to see how the urine travels through the kidneys. If we decide to transfer to his care, he'd like to take Jackson back to the OR to Peek inside so he knows everything that is going on and then he'd leave a catheter in to do the studies.  This turned Jason off right away.  He doesn't want Jackson to be tortured more - understandable. (The NP later called to say that the records were there but in the wrong place).

 

 

Then we met with Dr Meyers who had a nice English accent and was a lot slower on the computer - he had to input all of our history since "we just got your 208 pages of records yesterday so I haven't had time to go through everything." Yeah Right!!!! Again, I confirmed that records arrived a week ago. Frustrating... He basically told us multiple times that he really likes Dr Muchant (Our current Nephro) which made me feel guilty about being there.  He was unable to explain why Jackson's healhty BUN has jumped up to 26, giving me poor excuses that were all easily arguable.  We have conceded that if no one else is worried, than we should not be either (?).  He agreed with our current plan of care, except that he would do labs every 3 months, rather than 6 months.  We asked straight out "We really just have to sit and wait for his kidneys to fail???" and the answer was "Yes". It was frustrating, however, when we asked him if we could have the MC records when he was done with them (since we get charged $1 per page) and he said No in a round about way, though we asked repeatedly.

 

So... it looks like right now we'll stay with GMC and request the two more studies to be done. Of course, they said that if infections start again, the game plan changes!!

School 2012

September 5, 2012

 

 

Jennibelle - 2nd grade - Mrs Parks @ KHE

She fell in love with this shirt and these BOOTS!!!!!

 

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Jaylee - 4th grade - Mrs Alberts @ KHE

 

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The first day we drove them so here they are the second day getting on their bus...

 

 

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Though Jaylee was skeptical and UNexcited this year, she seems to enjoy her teacher and class.

Jennibelle came home singing "I love Mrs Parks..."