Still waiting on Insurance Approval to go to Boston for the consult. Insurance companies can be a PAIN I am learning. It’s hard to keep Laura from being very active, when that is how she normally was. I am hoping they call this week sometime to give me a date, then we are off.

In the meantime, the weather has been BEAUTIFUL, so we are soaking up every last bit of it. Where else but at the lake. It’s kind of silly I have been driving to it,since it is directly across the road through a field, but I don’t want Laura getting tired out. 

So I talked with Boston. The date for a consult is June 28th.

Sunday Laura had a bad headache so we ended up heading to the hospital.. I noticed a slight droop in the corner of her mouth which scared me. Sure enough she had another small stroke. She is doing well considering. She is at her base line, where she was before this one. This was such an emotionally draining week. I have to say I am quite impressed with the Hospital we went to and how quickly they diagnosed her condition.

I LOVE her smile.

AND this one.

GOOD news is there is a way to treat this.

(Lauras favorite nurse)

Brain surgery….if this sounds scary, well I can tell you first hand, YOU have no idea.

I will be meeting with the surgeons in 4 weeks. There is a chance we will be doing the surgery at Boston Childrens.

http://www.childrenshospital.org/az/Site1317/mainpageS1317P0.html

Laura has new glasses..

I didn’t realize how bad the second stroke affected her eyes.

UNTIL we picked them up and I tried them on.. oh my!

She was practically blind! (I think so)

The second stroke affected her vision in her right eye, she couldn’t see to the side.. I think they called it tunnel vision or something. 

She can now sit on the COUCH instead of 2 feet from the tv when she wants to watch it.

Brushing teeth ..

And bathing….

very busy last night…

Miss Laura was very busy today in her room.. her very OWN room we were surprised with when we arrived home. Very dear friends we have and my sister Robin and her husband Nate had the idea..~Thankyou!

Well she absolutely loves it, so I don’t really mind that it cut our living room in half almost, AND she has a key so she can lock it when she leaves. (the little kids go through her stuff any chance they get, it’s sort of for me too! I don’t have to worry about them getting her things!)

She was busy organizing and arranging her many MANY things.

This TY bear was given to her from some very special friends, it was once their daughters bear and when she past away they kept it for many years…They wanted Laura to have it because they said she is special like the bear is to them.. Such a sweet couple Jack and Jan. Thankyou so much~

Here she wouldn’t let me help her.. I think she was trying to scare me

This is hanging on her wall

We finally have some sort of routine with therapy now, Monday, Wed, and Friday, 9-11 am she has Speech, PT and OT. I have had help from family taking her to these appointments if I can’t make it. Things are settling down and each day gets easier.

I enrolled Sienna in PreK for September today, I can’t believe she is GOING TO SCHOOL THIS YEAR!  I filled an application for Alaina to attend 1/2 day preschool starting in November when she turns 3. THREE!?!? WOW  What will I do when I just have the baby? Even for just a few hours? I know what I will do! But I’m not telling.

These were taken tonight he was so cute and snugly~

Going….

Going……

GONE!

You know what tired him out??

this was after he woke up from his nap this afternoon… (he demolished a marshmallow duck!)

Ate PEAS for dinner….

“More peas please?”

Had a play session with his big Bro…

was trying to teach him how to draw ..and wright his name..

 He loves this book so much and figured out very quickly how to feel the different spots in the book with texture. It’s so cute watching him, I’ll have to get a video next time!

Just thought I would share, he has been doing sooo well in the carseat now. These are my must haves for the occasional “fit”

The tube baby food is the best invention yet.. all I do is squeeze some in his mouth and voila! He is quiet!  (No need to remove from carseat!)

I don’t know what I will do when I run out of them..we bought $60 worth when we were in New Orleans,we could only find them at Whole Foods. We don’t have one here. So I Think I will try Wegmans? Only place I have not checked yet.

 My beautiful one and only blue eyed child, looking ever so sweet !

Don’t let him fool you he is SNEAKY!

~Carter

~Jonathan

~Anthony

~Sienna

~Alaina

~Laura

One thing that has not changed with her is she still loves to stay up late! She is watching the Royal Wedding specials.

I have NO Idea how the little ones did not wake up with all this thunder… I love the sound of constant rumbles.

Anthony has been so stinken fussy all day today. I feel so bad for him. His gums are all swollen and red. The only thing that did help was a cold wet washcloth.(thanks mom for the idea!..I have used it before on the others but i just forget sometimes when it’s in the moment) 

Laura has therapy tomorrow. Her Aunt is taking her. It’s nice to let others help sometimes, I struggle with this because I just have that instinct I guess to do it myself…EVERYTHING myself.

Most of the times things run smoothly around here. Most of the time we have good days. Once in a while we have what I would call a Crazy Pshyco messed up day. Ummm which would be today. I could not do anything. I mean it when I say anything. I was not even allowed to go to the bathroom!  It was CONSTANT go..go…go! 

Anthony slept a total of 20 minutes all day, I carried him everywhere I went. Normally Laura would be able to hold him or pick him up for me when I can’t get to him at the moment he needs me. Well this is not the case now. I know she misses being able to do that also. She lays on the floor and plays with him whenever I set him down. Well, today was different. I could not set him down…. before he would even TOUCH the floor he would wail so I would just pick him right back up.

To be honest…I didn’t even want to sit here and wright this.. I ache all over my body and I am so extremely exhausted. I have SOOO much laundry to do, a kitchen to sweep and mop,clothes everywhere,CRUMBS everywhere, MUD everywhere from the boys literally ROLLING in the mud today when they got home from school. I mean literally. I would have taken a picture, but I was too mad at the moment. I made them go upstairs in the shoes and clothes they were wearing and put them in the shower clothed with shoes and all ..the rule was DO NOT COME OUT until every last bit of mud washed down the drain.

The mud blends well with my unfinished bathroom..which we were going to finish with this years tax refund,which pretty much will now have to wait until next year..

I just rambled for 20 minutes, I am not sure where I was going with this, I think everything just built up. I am thinking tomorrow the sun should shine again and it will be a new day..a very nice day.

 I think too much! Please BRAIN would you turn off?!?!? Just so I can sleep? And could you please wake me up in the morning..I mean REALLY wake me up from this horrible dream I have been having since March 4th when everything turned up side down on me?

Eighty in the WORLD..I  am still trying to grasp that fact.

Vasculitis….

Medium Vessel Vasculitis…

In her BRAIN

Unknown cause,

 no underlying reason they can find.

 I don’t get it.

A new virus? Who knows.

I wish i knew.

But what good really would that be?

It wouldn’t change anything.

I am so tired..

I don’t get it, how i keep going, I must have batteries stuck somewhere.

I need to cry.

But I can’t..no really I have tried.

I told my husband to stomp on my foot really hard just to get me going..

we both laughed. Of course he didn’t.

Today, I dropped a bowl,it broke….

Got a gut cut..the kind you can see the meat puffing out…

REALLY weird did NOT even feel it!

I saw the blood..

Freaked out!

SIX stitches…SIX! didn’t feel them either! or the pricks from the numbing needle…

wonder why I didn’t feel anything.

I just don’t get it!!!!!

Probably should have cleaned it up before I took the picture

what next?

 So before Laura was discharged,they wanted to take her on an outing, I suppose to see how well she would do. They told her to pick a place, she picked the MALL where else? HA!

She became good friends with the girl down the hall, Rae Lynn, who was in a pretty bad accident 3 weeks ago (in a coma for a week) and they happened to be discharged the EXACT same time. We walked out of the Hospital together.. (more on that in another post)

They BOTH decided to go to the Mall of course. The 2 women with them were part of the program.

Just wanted to mention, in case you were thinking she looked different, Laura is getting quite “puffy”, a side effect of the Prednisone…she looks at herself in the Mirror and laughs she thinks she has chipmunk cheeks!

It was sweet watching them walk together, Lauras right side is affected and Rae Lynns Left side affected, they limped opposite, but it didn’t slow them down a bit.

Notice how the Therapist stands close to the girls, not letting them get too far away from her, they call this “stand by assist”. Just in case they lose their balance. This is when they were just starting out in the mall, the most walking they had done in a while.They had lots more to do if they wanted to get to the stores! A bit later, she let them a little further ahead, but keeping a close eye out for signs their legs were getting tired.

First we ate…

Laura picked SUBWAY where else?

Rae Lynn is a typical 15 year old ! I had to laugh at her constant texting. Her Dad had told us that when she first came out of the coma, he heard her saying something,so he got closer and thought she was saying, “I want to go home” with her eyes still closed. After she said it a few times, he realized she was saying, ” I want my phone”.  

The stores in this mall are HUGE! After we ate, they mapped out a plan.

They picked this store first.

GREAT sales! Laura found a few things she liked.

Next store was………….

moving FAST…teens shopping BEWARE .

B-lined  $$$$ eeeeekkkkk! $$$$

Actually it wasn’t too bad, she found three shirts, and they were short sleeved, each one was only $5. (clearance section in the back!)

I fell in love with the clothes here, I HAD to get something too!

Taking a break…

Next store was……

HAHA Just Kidding!… I didn’t DARE set foot in this store this time. (I really wanted to though!)

Lauras picking up speed! Claires!

A girls DREAM store !

And a TON of SALES! Let me put it this way, her purse is 1 pound heavier now .

10 for $10 sale !!! (we spent at least 20 )

Laura and Rae Lynn did really well, They only had to rest 3-4 times. We went in a few other stores, then had to make it back to Childrens in time for the 8:00 meds.

Friday was the day of discharge!

Laura with the two “brain doctors” and the psycologist, saying bye.

With the Teen recreational Therapists.

With her Dad and his Coworkers.

With the Music Therapist Kim.

The Occupational Therapist.

The “wheelchair ladies” They are NEVER late for therapy!! They would come to the room and WHISK her away!

Miss Mary was on vacation, I wanted so bad to get her picture..very VERY sweet lady. I will never forget her!

Speech Therapist.

Physical Therapist

Another Physical therapist.

Very hard to remember all the names!

Finally in the room waiting for the “official” discharge papers…

AND WE ARE OFF!!

Ummmm, AFTER we get the UHaul!!!

SEE Y’ALL SOON!! WE ARE COMING HOME!