Kiddo Updates

Caitlyn -- She passed 1st grade with 5 A's and 2 B's. She had one of the highest reading levels in her class! She's doing SO well. Especially for having missed so many days due to dr appts/visits. I'm so proud of her.

We are still doing the cath'ing right now. 5X a day. And will continue to do so until after surgery in July when we find out what Dr. Retik wants us to do.


Speaking of, we will be in Boston from July 18th through the 30th. Her surgery is scheduled for the 20th, which is a wednesday. Please keep us all in your prayers then. It's a bit scary for us all to see her go in for surgery. Even with all this these past 4 years, she's never had surgery. Also pray for the little girls as they will be left behind with their Nana the whole time we are there.


Isabella -- Miss Bella (as she has deemed herself) is doing wonderfully. she's doing well health wise. No seizure in over a year! She is getting so big.

She cannot wait to be spoiled by Nana this summer.



Calleigh -- We're still doing tests on the little miss. So far we have ruled out Cystic Fibrosis and thyroid problems. We will be doing another repeat VCUG to ensure she does not have the same Kidney issues as big sister.


All in all the girls are doing wonderfully. We are really looking forward to all kinds of fun this summer with our three blessings. also happy to report that Dom will be here to help out again this summer. The girls LOVE her so.

Why I am fighting for 13%

I've been asked, multiple times in the last few weeks, why we are going to take Caity back to Boston for this kidney surgery to save a measly 13% of kidney. After all, you can live with just one kidney.

13% may seem like nothing to most people. But to us, it is worth saving. It means our daughter can play sports if she so chooses.

It means that if we are ever in a car accident or other medical emergency, we don't have to worry about her being completely without kidneys. It means we don't have to worry about high blood pressure or other complications from one overworked kidney.


That 13% means everything to me. The least of which is that my baby could someday lead a normal life. A life without daily antibiotics, multiple pills, and catheterization multiple times a day.

13% is worth it. It's worth taking her across the country. It is worth the $1500 in plane tickets, the lodging costs, food, subway and any other expenses this trip brings. It is worth it because SHE is worth it. She deserves this. She deserves so much more than this.

So yesterday.....

We took Little Miss Calleigh to Children's for her Pulmo Lab tests. Anyone who knows Calleigh, knows our Respiratory issues with her. And also knows her weight gain issues.

So our Pediatrician, whom I love, wanted to have a few tests done, just to rule out some problems.


Yesterday was the first part of those tests. The Sweat Chloride test is done to diagnose Cystic Fibrosis.

They use a machine to coax the glands to produce sweat. Then they tape a plastic cover over some gauze to collect the sweat and leavae it all bandaged up for 30 minutes. After that the sweat is analyzed.

Miss Calleigh did not appreciate the bandage at all, but did fine with the rest.


We also had some bloodwork done to check Thyroid functions.

Miss Calleigh in the Ergo while we awaited sweat collection

Boston news!!!

As you all know, we flew to Boston last week to get a 2nd opinion on Caity's condition. Boston Children's is ranked #1 in the country for Uro and Kidney issues.

Heads up, there is some TMI going on her regarding UROLOGY issues. If pee-talk makes you squeamish, you might not want to read the entire thing.

Let's start with the facts. Caitlyn has the following:

A genetic anomaly known as
Mega Ureter


Grade 5 (the worst)
VUR

AND a non-nuerologically caused
Neurogenic Bladder


None of this is really new news to us. But it lines out the facts of her conditions.



while in Boston we had further Urodynamics testing which did reveal some amazing news to us!

1. There is no sphincter dysfunction. This means great things!

2. Her bladder, though abnormally shaped, stretched to capacity, lack of elasticity, is functioning NORMALLY!

3. She does have weak bladder contractions when urinating. This means that her bladder is doing what it needs to be doing, but it is weak. (This will be come important later in the report)



Some very awesome, and interesting news was that upon our first meeting with Dr. Retik, he told us that he has seen MANY children with Caity's issues. EXACTLY the same types of problems. We knew before that VUR is not rare, and neurogenic bladders generally are not either(except in Caity's case), BUT The whole combo of these issues and how drastically they have affected Caity we were told by Arkansas Children's was rare and something they'd never seen before. Dr. Retik told us that he has seen it often and coincidentally it was all in girls. He has also HELPED many of those children. *PRAISE*


After discussing things with Dr. Retik for about 30-45 minutes, we were led downstairs to a different section of the hospital to do the Urodynamics testing. To say that they do things differently in boston, would be an understatement. Urodynamics included what we are used to, a technician and a nurse But ALSO a neuro specialist and a uro specialist. This was great because while the test was being performed they were evaluating BOTH neurological and Urological responses. They asked us questions and told us thigns as the test progressed. Afterwards we met in an exam room, where they did a physical exam AND showed us the printed results of the urodynamics. AWESOME! As I stated above we got good news from the test.

After that, we got to leave the hospital for the rest of the afternoon. (Here's where I'll sneak in the mention that Hubby got us lost in Boston. he got us on the wrong bus!)


Then on Tuesday morning we met with Dr. Retik again. He was full of cheer, hope, and good news.

#1 -- He agreed taht the urodynamics went excellent with great news. He had been worried that there was a) sphincter dysfunction, and b) that her bladder was not functioning properly.


#2 -- He said her 13% of kidney function was salvageable and WORTH saving! And we discussed surgery to reimplant her ureter!!!! (Surgery is scheduled for July, more on that in a bit)

#3 -- The most fantastic to hear. He thinks that after the surgery to repair the reflux, given time to heal and retrain herself, that her bladder will be able to empty itself AND we will be able to quit catheterization.


SO, we left feeling very very relieved. We will go back for her surgery in late July, and be in boston for two weeks. After that, we'll just kinda let her heal and work on retraining her bladder.

Finally getting somewhere!

Next Monday, the 21st, we FINALLY are meeting with the one who I hope will kick off things to start Caity's surgery! I am so hopeful that the new URO NP will sign off on surgery and we will get the ball rolling. I'm ready for my daughter to have a semi-normal URO system. And I'm ready for the UTIs to stop and for her to not take so many medications.

If you are the praying type, I would love and appreciate your positive thoughts, prayers and anything else you can muster that all goes as planned and we get a surgery spot!

So... Miss Calleigh

We had her 15 month checkup on Nov. 30 (my bday).

It did not go real well.

She had gained no weight, and lost some of what she'd gained. Very disconcerting. Pede labeled her FTT early childhood and we'll be speaking to a nutritionist and having some tests run to rule out any problems.

IN the meantime, I'm keeping a food journal of what she eats, when she eats it, etc.

We've already added in Pediasure. Hoping to try benacalorie soon.

Pray for weight gain. And if you have any good suggestions, throw them at me. (Just remember gluten free, corn free)