But I do sort of miss my babies.
 |
| Miss Big 2nd Grader |
 |
| Pre-K Here comes trouble. |
 |
| PRE-K door with Bella's name! She's SO happy |
Look forward to lots of Bento lunch posts to come! I'm packing lunch for TWO this year!
Road Trippin'
8 years ago
Showing posts with label caitlyn. Show all posts
Showing posts with label caitlyn. Show all posts
Monday, August 15, 2011
This year....We sent TWO girls off to school
I still didn't cry.
But I do sort of miss my babies.
Look forward to lots of Bento lunch posts to come! I'm packing lunch for TWO this year!
But I do sort of miss my babies.
Look forward to lots of Bento lunch posts to come! I'm packing lunch for TWO this year!
Thursday, August 11, 2011
Today is Open House
Which means we are one step closer to School!
Tonight we will find out who Caitlyn has for a teacher this year and also Mrs. Reimers will get to meet what will most likely be her most infamous student, That would be Isabella.
All of Caitlyn's supplies are bought. Isabella, we still have to pick up a few, because they just posted Pre-K's list.
Here's to a fun fun year! (For all of us!)
Tonight we will find out who Caitlyn has for a teacher this year and also Mrs. Reimers will get to meet what will most likely be her most infamous student, That would be Isabella.
All of Caitlyn's supplies are bought. Isabella, we still have to pick up a few, because they just posted Pre-K's list.
Here's to a fun fun year! (For all of us!)
Wednesday, June 15, 2011
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.
![]()
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.
Monday, June 6, 2011
Wednesday, June 1, 2011
Tuesday, May 24, 2011
It wasn't all Dr visits and Hospitals
while in Boston, we also took her out for a good time. And New experiences!
For the first time ever, she got to
She also got to
We visited USS Constituion Museum & the real Ship , New England Aquarium, Boston Children's Museum and Boston Museum of Science
I'll be posting more pictures of our adventures in the days to come.
For the first time ever, she got to
- Ride a Train (SUBWAY)
- Ride a Ferry
- Fly (well okay, she did that before, but she was 10 months old and doesn't remember)
- Try Lobster (she didn't like it)
- Ride a Public Transportation Bus (and get lost doing so, Thanks Daddy!)
She also got to
 |
| Cross over the bridge to get to the Navy Shipyard |
 |
| See the USS Constitution |
 |
| Look out at the water from the USS Constitiution |
 |
| See the Harbor Seals Playing outside the Aquarium |
 |
| Ferry Ride -- She loved it! |
 |
| Touch a starfish |
 |
| Watch sea turtles pushing eachother around |
 |
| Touch Rays |
 |
| And Sharks |
 |
| And Climb Super Duper High |
We visited USS Constituion Museum & the real Ship , New England Aquarium, Boston Children's Museum and Boston Museum of Science
I'll be posting more pictures of our adventures in the days to come.
Wednesday, May 18, 2011
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.
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.
Monday, April 4, 2011
Caitlyn's Status
As I posted last time, we had a busy few days last week.
Monday started with a renogram.
As you can see (or I hope you can), we are down to One kidney. The good kidney is functioning at 87%.
Then we moved on for the MRI. Poor girly was SO hungry by the time we got to the MRI, but she was a super trooper through it all!
When she got out, she was easily awakened and very hungry and thirsty. She drank down a whole sprite very fast, and ate some graham crackers.
Then we got to leave in style
After the tests were over, she wanted to go to Chick Fil A, where she ate A LOT. Then she got some ice cream.
Tuesday, we headed back up to ACH, and met with her URO and the URO nurse Practicioner. It was not good news. We were told that the kidney was in fact gone. But on top of that she has some other serious issues and surgery is not an option right now. Instead, we will be having to Cath her 5x a day, every day.
Monday started with a renogram.
 |
| She had to lay REALLY still (without meds) for about 30 minutes for the scan. |
 |
| This was the view on one of the machines during the scan. |
 |
| This was the view on the computer monitor. |
 |
| Another view from the machine. |
As you can see (or I hope you can), we are down to One kidney. The good kidney is functioning at 87%.
Then we moved on for the MRI. Poor girly was SO hungry by the time we got to the MRI, but she was a super trooper through it all!
 |
| Still out of it after MRI |
When she got out, she was easily awakened and very hungry and thirsty. She drank down a whole sprite very fast, and ate some graham crackers.
Then we got to leave in style
 | |||
| ACH Wagon ride! |
After the tests were over, she wanted to go to Chick Fil A, where she ate A LOT. Then she got some ice cream.
Tuesday, we headed back up to ACH, and met with her URO and the URO nurse Practicioner. It was not good news. We were told that the kidney was in fact gone. But on top of that she has some other serious issues and surgery is not an option right now. Instead, we will be having to Cath her 5x a day, every day.
Wednesday, October 13, 2010
Subscribe to:
Posts (Atom)
