2 - 3yr olds, a pair of scissors, and an unsucessful nap.

Last week, I was outside reading a book on the deck when a blood curling scream came from Riley's room. After I rushed up the stairs, threw open the door, this is what I found!!After Keegan had packed away his Kindergarten paperwork, he also packed away his pencil box with his crayons and scissors - GUESS WHO FOUND IT??
Riley was in shock that about 10 of her barbies and brats all had haircuts like hers.

Some fun in our "OWN" sun!


Good News, Bad news, No news

Today after Riley and Keegan got home from summer school we were off for a fun day in the sun at the local pool. My mom and I juggled all 4 kids and we didn't even loose any!

This morning, prior to the pool, I had a meeting to find out if Carson and Cooper qualified for early childhood in which they did not. It's sort of a good news, bad news thing. There are some area that Carson needs help with, but not enough to actually qualify for assistance.

No news from Dr. I's office today on the plan for Carson. Actually, there won't be any news for awhile because he is out of the country until the 2nd week in July. CRAP!!


I got your email, but it had gone to my spam folder. I tried emailing you a LONG email, but when I went to send it, It disappeared!!! Your email is no longer in my spam folder either because it cleared itself out. So, I am not sure if you got my email or not, but if not, I no longer have your addy either......UGH!!! Could you send me another one just to get your addy? Thanks! It's going to be a rough day if I cant even work my email!!

For the rest of you, Carson and Coopers eval for early childhood went well. I should find out this morning is they qualify or not. Also, today is D day to get some answers from Carson CMG. I will post again if I hear anything.



Carson's CMG results

There is no great way to start bad news, so I will just lay it out there.

Carson had a HARD time today with her CMG (cystometrogram) bladder test. The test should have only taken 40 minutes and instead it took 2 hours. A L........O.........N.......G, grueling 2 hours. Carson has bladder spasms and every time her bladder had a spasmed she SCREAMED bloody murder. She spasmed every 15 - 30 seconds. After the first 30 minutes we were both sweating to death, and she was so pissed off at me and the world.
They sedated her at 3 different times. It was nuts. I just hope she doesn't remember to much of it because it was traumatic for her. I do think it was the first procedure that I cried at.

So...here are the results. Carson has a Neurogenic Bladder. For her age and her weight she should be able to hold 115ml / 150 mls of urine. Today, she only held 30 mls. Not good.

Here is a little info on her condition.

What is a neurogenic bladder?

Neurogenic bladder may also be called neuropathic bladder. The muscles and nerves of the urinary system work together to hold urine in the bladder and then release it at the appropriate time. Nerves carry messages from the bladder to the brain and from the brain to the muscles of the bladder telling them either to tighten or release. In a neurogenic bladder, the nerves that are supposed to carry these messages do not work properly, essentially paralyzing the bladder.

What causes neurogenic bladder?

In children a neurogenic bladder may be secondary to a birth defect or it may be acquired as the result of a different problem. The following are some of the most common causes of neurogenic bladder:

- Spina bifida defect that occurs during early fetal development. The defect consists of incomplete bony closure of the spinal cord through which the spinal cord may or may not protrude.

- Spinal cord trauma

- Central nervous system tumors

In many cases, neurogenic bladder is associated with the following:

-urine leakage (this often occurs when the muscles holding urine in the bladder do not get the right message)

-urine retention (this often happens if the muscles holding urine in the bladder do not the message that it is time to let go)

-damage to the tiny blood vessels in the kidney (this often happens if the bladder becomes too full and urine backs up into the kidneys, causing extra pressure)

-infection of the bladder or ureters (this often results from urine that is held too long before being eliminated)

The brainstem is located at the base of the skull. Within the brainstem is a specialized area known as the pons, a major relay center between the brain and the bladder. The pons is responsible for coordinating the activities of the urinary sphincters and the bladder so that they work in synergy. The mechanical process of urination is coordinated by the pons in the area known as the pontine micturition center (PMC). The PMC coordinates the urethral sphincter relaxation and detrusor contraction to facilitate urination.

So with all that said, Dr. "K" will take the results and talk with Dr. "I". I am anxious to hear what Dr. "I" has to say. Is this Chiari related? Or have we opened a whole different can of worms??

After all that' I should report in with my weight loss progress:

Today's loss - .5

Not great, I know, but I am really struggling here.

**Traci, thanks for the comment, but I have no way of contacting you. Please email me at coletwins03@yahoo.com Thanks!


Picture updates - Baltimore

I am so behind on updating pictures. Here are a few from our "Girls weekend" out in Baltimore.

Carson and Dr. Ben Carson
Jenni and Carson hanging out
The Ronald McDonald House play room

The kitchen - where we met the our new favorite "spice" girls! Miss ya ladies!

Our bedroom

LOVED this sink we had

National Aquarium

Thanks for the popsicle SUGAR!


Monday measurement - behind

We are in our 2nd week of Summer vacation and it's been busy.
The kids started summer school this week and they are loving it. I'm loving it too.

I didn't get a chance to post on Monday for " Monday measurements" but it wasn't to exciting. Anyhow, here it is:

Goal: 40 lbs

Last week: -3 = 37lbs

This week: -1 = 36lbs

It's not great, but it is a move in the RIGHT direction.
We've got a crazy busy week coming up.
Monday, Carson's in Madison for her CMG test, and then on Thursday both kids will be evaluated for Early Childhood, and it they qualify, the IEP meeting will be on Friday. It would be great to have them in school this fall.
I am hoping to have more answers about the chance of a possible Chiari decompression. The unknown is really killing me. UGHHHH!

Anyhow, I will update next week as soon as I can.
Here are a few pictures of the past few weeks.



I am so behind in updating pics - so here are a few....

Riley's EEG
The lake house
Sunset at the lake
The kids at the beach

Miss Riley
Keegan trying to catch tadpoles

Carson and Coop

Riley and her tadpole


Our other lake friend


Brownies and cheese curds...never a good sign

Especially when it comes to dieting!

It just means that our doctors appointment with Dr. I went a bit more "south" than I would have liked it to. Riley got an Ok report. She was a bit nervous to meet the new doc, but did well once she warmed up to him. She did really well with her neuro exam and didn't seem real worried about her "starring spells". We will just keep an eye on it.

Carson on the other hand didn't really get the news I was expecting. Her sleep study cam back ok - but he really wasn't worried about it. BUT he did compare Carson and Riley's (per op) MRI scan and told me that they are exactly the same. If it wasn't for the rocking and the incontinence issues he wouldn't be to worried about her right now, but because she has theses issues the "D" word came into the conversation - DECOMPRESSION. Carson is having a CMG Bladder test done on the 22 and if Dr. K believes her "potty" issues are neurogenic, Dr. I will lean towards a chiari decompression. If he doesn't not believe her issues are neurogenic- then we MAY hold off for a bit to see if it will improve.

So, on that disappointing note.....I am eating fresh cheese curds. It's a Wisconsin thing!


Mondays measurments

Sorry I am a bit late on the weigh in today. We are up at the lake and when we are here time just gets away from me. Sooo...

Need to loose: 40 lbs

Today's loss: 3 lbs
Left to loose: 37lbs.

Pretty good for a few days on and a day or 2 off.

Today, Riley lost her 5th tooth! Between the 2 kids it's RAINING teeth here!

They are sure keeping the tooth fairy busy.

I will post pics when I am able.


Last day of school, Last day of school......

I know that I promised an update on Carson's appointment last Thursday, but I didn't feel like blogging and really.....there wasn't much to blog about, until yesterday!
I CAN NOT believe I have Kindergarten GRADS!

CONGRATS Riley and Keegan for a job well done!!
~First day of Kindergarten

~Last day of kindergarten.

I remember at the beginning of the school year I wasn't sure Riley was going to make it. Keegan had already been in the school the previous year and knew a bunch of kids in their new class. Riley knew no one and with her self esteem and self confidence issues, I wasn't sure she'd make it. There had been some bumps in the road this school year for her, but she did just fine. Hopefully she will be more confident this fall going in as a first grader.

Now, back to Carson. I was a wee bit frustrated with Carson's appt. with Dr. I this week. What's new, Right? We were told that her ICP was normal and that everything in that area was great. She had her stitches/staple out and did great with that, too. Then Dr. I says, "well, I am not sure about her rocking, why don't you have your pediatrician follow her?" UMMM NO! WAIT!

Me: What about the results from her sleep study?

Him: She had a sleep study done?

Me: YES! On the 18th!

Him: Where did she have that done?

Me: Here in town.

Him and his nurse: We'll see if we can find those results.

Me: Perfect, because the plan today was to talk about the PLAN for her.

Him: Oh Yes, now I remember.

UGH! And this is the BEST that we have in our state? No wonder why I am stressed out so much.

So, they will locate the results and we will chat about them at Riley's appointment next Thursday.

Also, some other big factors in Carson's "plan" will be the CMG procedure she will have done on her bladder on the 22 for incontinence.

So, needless to say, No Plan because we are still waiting for more pieces to the puzzle.

Riley will see Dr. I for the first time next Thursday for an eval. I am hoping he will schedule an MRI to be done. She has not had a post op MRI yet and I would be interested in seeing the difference.

This coming week I will move myself and the kiddos out to the lake for just about a week. They need their time to run and be free before summer school starts on the 15th.

So, that's what's up with us....

Thanks for checking in.


A new answer

So many people over the years have asked what it is like to go through all the medical issues we have encountored, and to be honest I have never really had a great answer. I have always just acknowledge it as, "What choice do I have", or "We just do it".
Those were my answers up until last night when I found this on my girlfriend Kaci's CB page (Don't tell, but she sneaked it from our friend Amy! LOL)

So, sit back and enjoy my NEW answer to our medical life.

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with "special needs" - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.....

.... but if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland


Todays weigh in

Ok - I am not going to "spill the beans" about my weight to the whole world, but after today's weigh in, I have decided that I have 40 lbs to loose. I am not looking to be super model material, just "mom" material. Not even "a sexy mama" just a plain old Mom.
Know what I mean?

Took Cooper to the dentist this morning to have 2 cavities filled. It went better than I had imagined. He was a trooper. I have been told that there is a connection btwn cranio/chiari and teeth. Not sure what it is, but I am looking into it.

At school today Riley and Keegan had "Olympic day". The kids had running races and all sort of fun relays. It was fun to see Riley happy again and let me just say, she was kicking some of the BOYS butts!! You go girl!