Back at it!

For you that KNOW me, you know that I have struggle with my weight since day one. With having kids with medical conditions, it hasn't help either. I tend to "eat" my stress away. I know I am not in a place right now to "run like hell" with dieting, but I know deep down, I need to get back on the bandwagon.

So, Mondays will be my weigh in days, and I promise, as I did before, to share my progress, good or bad, with you.

Thanks for hanging in there with me.

Remember me?

I know I am way over due - I'm sorry. It's just that things have been pretty hectic around here.

Last Saturday my parents and my family flew out to NJ to see my grandma for the holiday weekend. It was a quick trip , but well worth it. She turned 90 yrs old on Memorial day so we had a surprise birthday party for her on Sunday, Monday she marched( well at 90 yrs old they allow you to ride "shot gun" in a corvette) with her local ELKS club, and on Tuesday we were back on the plane for home.
Feeewww it was busy, but wouldn't have missed it for the world!

I know a lot of you have been asking for results of Carson's ICP monitor and her sleep study, but to be honest, I am waiting too. I am sure I won't hear anything until June 4th when I take her back to have her stitches and staple removed. I am also waiting to hear what the "plan" of attack is going to be.

Riley had her EEG done yesterday. She did ok once she calmed down. At first when we got there she was being shy, they she bursted out laughing which quickly turned to tears......this poor girl is so traumatized and scared of her own shadow its sad. If anyone has any suggestions, I would love to hear it. She needs some sort of help, just not sure what.
Still waiting for those results as well.

Other than that.....just waiting for school to get out - June 5th. The kids will have a week off and then start some fun summer school classes.

There is a possibility that Carson and Cooper will attend early childhood "school" this fall. We will go through a second evaluation and then an IEP meeting the following day. I think both kids would really benefit from it. Keeping my fingers crossed.

Hope everyone had a great weekend!

Finally

I dont know what the problem has been, but I have been having trouble getting onto my blog!!!

Since I just emailed most of you, I won't go into much detail here, but we have been having issues with Riley at school. She has been having "staring" spells and is going to be having an EEG done with her pediatrician on the 27th. I've been told it could possibly be due to mini seizures/ spikes in her brain waves. We are hoping it is just a "little girl day dreaming".

Contacting Mars

Surprisingly, Carson did very well with her sleep study last night. It was an adventure like no others.....

I am not sure when we will hear results, but I will let you know when we do.

Hopefully that is it for hospital vinyl for awhile. I can't stand to sleep on it ANYMORE!

Unbelievable

No answers... AGAIN! We were told this morning that we would be staying another 24 hours to collect more data. We just saw Dr. I and crew and we are going home. She does not have elevated pressure. So, no need for more data. They took the probe out and stapled her shut.

Good new: No pressure

Bad news: No answers or directions.

update 3

Well, we made it through the night. Feeewwww! It was a long one!!

As of this morning, we've only seen the NSG resident and it sounds like Dr. I may want more data. That means we could be here another 12 - 24 hours. Ugh.

She has been handling everything pretty well. She has been complaining of headaches, but I think that is to be expected.

I will post again after we see Dr. I.

Tired

It's 1:20am and I am having a hard time sleeping. Carson is also having a hard time. She has been complaing that her head hurts and is rocking more then normal. They have her on sraight tylenol, but if she doesnt get some sleep soon I may have to ask for something a bit stronger.
Alas, I also vowed to NEVER sleep in a PICU again, but this one is so different than others. It's been kinda nice.

We will see Dr. I in the morning and hope that he has a plan up his sleeve! I am hoping that he will have the data he needs and we will be free to go home!!

I will write more after we hear the "plan".

update 2

She is all finished! Things went well.

Here pressure has been a bit low

( -1 / 3) but they said she lost a bit of CSF when they did the surgery. As she producess more, her pressure may come up. We'll see.

I will post later.

update

Well, we are all settled into our room. Carson has been a strong little girl. It took 3 pokes to get the IV in. She only cried for the 3rd poke. AMAZING I tell you. She is MY HERO!

Since it took awhile to get the IV in we are a bit behind schedule. Dr. I will be in at 130p to start

the surgery and get the probe in.

I will write more later.

Here we go again

We are packed and ready to hit the road early in the morning. We will check Carson in at 11am and surgery should be at 1pm. She will stay in the PICU as long as the probe is in.
I will post as soon as I can!

Thanks for checking in on us!

My Mom - by Keegan and Riley

This was a work sheet that Keegan and Riley came home from school with about ME.

My mom is the prettiest when she: Sleeps

My mom weighs: 50 pounds

My mom loves to: Shop

My mom makes me laugh when she: Tells me a joke

My favorite time with my mom is when: We go out to eat

My mom is the greatest because: She is cool

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Riley's:

My mom looks prettiest whe: she has earrings

My mom weighs: 218

My mom makes me laugh when: she tells funny stories

My mom loves: to play wii

My favorite time with my mom is when : we go to TJ MAXX

My mom is the greatest because: she is smart

a loss for words

It's been a long week since I've been home. A lot of mixed emotions, trying to get myself prepared for Carson's 2 day hospital stay for her ICP monitor, then her over night sleep study a week later.....Ugh. I just hope that we get some answer from these tests. If not for me, answers and direction for Dr. I. I hate, HATE putting her through all of this. It just breaks my heart.

Anyone know where I can get girls 2 piece button up jammies? I know she can stay in her hospital gown, but I know she would be more comfy in her own jams.

Well, that's about all I've got. I'm tired. If I don't post again prior to her surgery, I will email once the probe is inserted and we are hanging out in the hospital.

Happy Mother's Day!!

HOME!

Oh, I can't even tell you how exciting it is to be home. Minus the doctors appointment, we really had a fun few days - just us 3 girls. I wish the weather had been better, but it sure didn't stop us from seeing a few local attractions.

It was so good to step off the plane this afternoon and see my husband and my 3 other kiddos. After all the stress, frustration, and confusion these last few days, It was nice to just let go for a minute and enjoy my family.

Sorry for making you wait to hear about our appointment, but to be honest, I wanted to make sure I was writing with a clear head and that I wouldn't make any "bad moves".

So, on Friday Carson had her appointment with Dr. "C". It did not go the way I thought it would. Actually it was a "foul ball" out into left field. He wasn't interested in reviewing any of her past medical records/charts, wasn't interested in viewing any of her past MRI's, he wasn't interested in seeing her "sleep rocking" video, and he wasn't even interested in feeling her head........ the only thing he viewed was her 2 month post op 2nd cranial expansion MRI. And with that the words "she doesn't have chiari" fell from his lips. I looked at Jenni and about fell off my chair. I don't think I even remember what he said for the next 30 seconds. How could that be? After hearing 2 well known "chiari" docs tell us she does, and for him to tell us she doesn't was a "smack in the face". SERIOUSLY!!
After putting a little pressure on him to view the sleep rocking video he told me that it was like nothing he has ever seem before. NOW we've stumped the man.
Prior to seeing the video he told me it was most like behavioral, but the whole story changes when she is sleeping. They then asked if we would be interested in coming back to see a different Dr. "C". One that could possibly get to the bottom of the rocking - but remember, no guarantees.
I don't think I can bring myself to take her back out East.

So, I've shed a few tears, punched a few pillows and have decided that we will stay with our local team. I've got to erase this appointment from my brain and pretend it did not happen.
I do not regret going, because if I didn't go, I know I would be playing the "what if" game. It was a great experience, but I have to plug away now, one day at a time,with our team here.

Our next move is on May 13th when Carson has her ICP monitor placed in Madison.

I will post pictures soon, so stay tuned!

a BIG hanks to my dear friend Jenni for going to hang out with us!

Time

Its been a long day here in Baltimore - and to be honest - it really hasn't been a "happy" day either.
Please give me some time to try and figure this all out and I will write later

Thx.