Halloween princess

Little Miss came home with these awards today.

I am SO proud of her!!

I wanted a picture of her holding them and this was the best she would give me.

Peter Piper, here we come!

Long overdue update

Summer is over but the heat is not so we are still enjoying time outside in the sprinkler!

Carly's old neurosurgeon said she should not be on a trampoline anymore but we did not agree.

How could we take away this fun from her?!!

We are however very cautious and only let her on with us around and with nobody but her siblings unless they are older and more responsible. :)

And she is finally mastering the bike peddle!!

Carly started school in August and is back at the Early Childhood Education Center.

Because she is there for physical therapy she gets to take the bus to and from school!

She is LOVING school!!!

In September Carly had a upper endoscopy with biopsy to make sure nothing was wrong that could be causing problems with weight gain. The biopsy did come back positive with esophagitis so she is now taking Omeperazole for reflux. She has gained 1 lb. since our last appointment which is good news but then lost a few ounces due to being sick. Her weight is still being watched VERY carefully while we try to avoid a feeding tube. 

Carly has become a shoe freak. She seriously has a shoe fetish.

School shopping was a nightmare because every pair of pink shoes she saw she wanted!!

She is always walking around the house in a pair of my shoes and most often my shoes are all pulled out of their tidy shoe carrier!

In not so exciting news, Carly had a bad UTI that went into her kidneys last month. We saw urology and today she had another VCUG to see if the Deflux implants worked. It was immediately apparent that the right side did not take and she is back to grade 3 on the right. Left side is holding strong and is not a problem! That means she has to either have Deflux again or have the re-implantation (open surgery). There are pros and cons to both. Pros for Deflux is that it is very non-invasive. It is done through the urethra under general anesthesia and you leave the same day. Con's are that the success rate goes down since she's already had it once and because she is a urine holder it presses the gel implants down and therefore it does not work. She will also have to undergo VCUG's a couple times a year until they are certain the reflux is gone. Pros for open surgery are it takes care of it without question. They can still have UTI's but the surgery prevents it from getting up to the kidneys. Cons are that it is an open surgery and will require a 3-4 days hospital stay and down time for about a month. It is considerably more painful and a harder recovery. BUT, it cures it.

So there we are.

We meet with urology next monday to make a decision. I'm leaning towards open surgery, just because I don't want to deal with this anymore. I don't want to deal with more caths and blood tests and profilactics. I'm ready to be done with kidney reflux once and for all without question of it coming back. Recovery will suck and it will be hard on her but it will be done.

The hard thing is not knowing if one more Deflux would do the job making the open surgery unnecessary. Why isn't there an answer book?!?!!

And the best news of all is NO SHUNT PROBLEMS!!!!!

Sandy

Is there sand on me?

My "little dolofin"

When we go swimming Carly tells me she is a "little dolofin".

She loves swimming and is getting a lot stronger with her floaties.

Next summer we should have a little swimmer!!!

 I'm workin' on my tan, mom!

(If you blow the picture on the left up and look close you can see her shunt tract and her "booboo".)

 Finishing off their day of swimming with a push-pop...yum!

Weight needed

I feed her, I promise!

Today was our visit with GI and nutrition. I LOVE our GI doctor and nutritionist. They are both amazing and caring. They spent 1 1/2 hours with us today going over history, daily routine, good day/bad day/normal day eating, best case, worst case, calorie increasing tips and our plan of attack in detail. During all this I was trying to occupy wrestling Burke, keep Carly happy and "shush" Cayson repeatedly which I'm sure made me look like the world's biggest basket case!! Note to self...next time DON'T bring unnecessary children!!!

Here's the gist- In October Carly weighed 12.3 kilos (27.1 lbs), March 12.5 kilos (27.3 lbs) and today 12.8 kilos (28.2 lbs). Her height to weight ratio puts her right on the border of moderate to severe malnutrition. In the next 2 months she will have a modified barium swallow study and esophagogastroduodenoscopy (upper endoscopy). Before any decisions are made we need to know for sure that her Chiari isn't causing her gagging, her gigantic tonsils aren't impeding her swallowing and that there are no "equipment" issues that could be part of the problem. She also lost half her blood volume, at least it looked like it, for a slew of blood tests checking her hormone levels, vitamin levels, CBC and whatever else he checked on that list! When we see Dr. Shub in 2 months all test results will be in and if substantial weight has been gained then we will begin preparing for the possibility of a g-tube. 

We've been working hard since March to get this girl to gain weight and its very discouraging to see that she has only gained ONE pound since October. I struggle to get her to eat well on a consistent basis and now she has started gagging on many foods making it impossible for her to eat when she doesn't want to. Now I'm struggling to even get her to drink 3 of her pediasure drinks a day! Her daily caloric intake is supposed to be 1150 calories and on a given day we are lucky to get half of that down her. We are fighting an uphill battle!

On days when she refuses to eat much more than dry cereal I wish we already had the stupid feeding tube. It would make life easier and there would be no worries about her receiving nutrition. I'm open to a feeding tube, it's just scary to think about taking care of the actual tube. G-tubes take work but takes away my stress and guesswork. They have to be cleaned, vented, drained, changed, protected- you always have to have a spare near incase it get's pulled out, it is surgically placed, it can get infected and it can leak....BUT I always know that she is being properly nourished. We'll see I guess, I'm not going to push it either way. We have new drinks to try and suggestions for increasing calories and making her 3 or 4 bites really count!

Idaho summer part 1

We just got back from 3 1/2 weeks in Idaho and loved every minute...except for the driving minutes, we didn't love those!! We tried to potty train Miss Carly but that girl just has NO desire and fights it with everything she has so I quit. She's going to be 10 and still not potty trained! She definitely loves being at the cabin and wants to go back!

One warm day (high 70's was warm this summer) the kids decided to play in the sprinkler when they were in the playhouse, obviously completely clothed! Mischievous little Carly sprayed her brothers and attempted to spray Grandma and I!

 Carly had her first experience camping and fishing and did great. She did so good that we decided to stay out two nights!! She is fearless and had no problem picking up worms and touching the fish. I however was a nervous wreck with her around the fire, fishing out of a boat and shooting guns. She is a camping girl in the making!

 She had fun on the swings and climbing the bars at the park in West Yellowstone. 

I once again was a nervous wreck!

 Carly loved the horses. And guess what, I was nervous! We kept a very close eye on the little ones around the horses since you never know what will spook them. She got to go on rides around the property with me and up the road on a lead. Most mornings would start out with her wanting to see "Cody" or "Stella". 

Part 2 coming as soon as I get the pictures from my mom's camera!

Dancing princess

Carly had her FIRST ballet recital and did awesome!!! Ok so she didn't dance much mostly stood around but she looked like such a cute kitty cat! I call her first recital a success. Now she moves up to ballet/tap and hopefully will grow leaps and bounds by her next recital in a year. My baby is growing up!

Swimming

 Carly and her cousin "P". They are such good friends!

 This is what she looks like after a long day playing in the pool.

The Many Faces of Carly

Today was Carly's preschool water party. I went with her and she had a blast!

 First the kids worked on puzzles. This is her "I did it!" face. 

 Carly had fun squirting teachers, running around in the sprinklers, playing at the water stations and being with her friends. Afterwards we all ate otter pops!

This is the best part of being a mom!