Seriously that really is how big it was! Look at my 11 year olds hand in comparison to the Caterpillar!! 

I just HAD to take pictures of what the sky looked like 2 mornings ago..it was the day we had hail storms. The clouds looked so neat!

I buzzed the boys heads last night. Today I buzzed my husbands AND since I did it on the back porch outdoors, the neighbor saw and asked if I could do his also.. so I did !  (very happy I didn’t cut him!)

My Mom watched 5 of the 6 kids today so I could go to an appointment for Laura , the appointment went well, I am so thankful!

Still very nervous about Lauras surgery scheduled for the 9th of August. I just can’t wait for it to be over.

Our back yard the other day, so beautiful!

Love her messy curls. Well it’s just a mess here.

Kids had this idea… a pretty good one! I wish i fit on that slide…or in the pool haha!

Laura met her new baby cousin today, Addison.

My sister Holly welcomed her new addition home last week. Beautiful baby girl.

Babies are contagious..IF I could skip the pregnancy part, watch out Duggars!

I am NOT a very good pregnant lady , very mean ugly grouchy woman! Well at least I feel that way. I don’t think anyone would think I am that way though.

While Laura and I soaked up the baby, Alaina had fun with her cousin Ian , Addisons big brother.

After the big hail storm that passed they played outside in the sandbox.

This morning we went to Grandmas and picked Berries!

shes ready!

me

Laura was only out picking for 10 minutes or so before she got too hot and escaped to air conditioning!

Well I do not think we are going to Boston. BUT the good news is the Doctor we met yesterday IS perfectly comfortable and capable of doing this procedure, AND he also mentioned possibly doing a bypass procedure once he is in there IF he finds a good vein to work with. WOW. This is allot for me to think about.

He is going to call me later today when he finishes going through all the paperwork and scans

If we go with him, he said we would be doing the surgery 1st week in August.

I was very pleased with him , he was very honest.

I am very glad we did not decide to go back to Syracuse for the stent procedure, because this Doctor said he would absolutely NOT do that in Lauras case, he explained why, which was exactly my concerns. (sudden high pressure flow when the vein is opened CAN cause the tiny moyamoya vessels to burst causing a hemorrhage.

Today is a VERY hot day! going to the Lake today!

And it actually lived to see another day!

Wow, a lot has happpend. Laura feels much better now, the fever is gone and she is up and about.

The Insurance company has not been helpful just confusing. All I want is to get Laura seen as soon as we can. Right from the beginning they have been giving me problems. They said they want me to go to Strong in Rochester, where Laura could be seen on Monday. Atty general, then put me through on a conference call with the doctors asst. at Strong. The first question I asked her was,” how many Pediatric patients with Moya moya has he treated?”  (mind you the Insurance company called him a “Moyamoya specialist” they had in network.)

She said maybe 1-2 in his ENTIRE career ! 

so glad the Atty heard that and what Ins. said. 

out of the blue Albany Doctors called (yesterday) and said they could see her today. I asked the Ins. if they were setting her up with Albany now, and they had no knowledge and told me it was unrealistic to get her records to Albany by today. SO i am still going to try to get to Albany today and PERSONALLY bring her records ,first picking them up myself.

What a mess.

Good thing I am focused (With the help of the Atty General) .  

Insurance took me in circles yesterday, trying to get me to say if the doctor I took her to in network, treatment would be the same as syracuse, that I would do what they suggest.

The answer is simple ..

Whatever BOSTON says I will go with THEY are the specialists in this rare disease, OPERATING ON OVER 400 SUCCESSFULLY!

I mean vs. 1-2 in an entire neurosurgeons career?  The doctor in SYRACUSE wanted to transfer her directly to Boston already, then Ins. stopped them and wanted to know what they would do.

The Stent.

http://jnis.bmj.com/content/3/2/160.abstract

I showed her this first asking if this site is a good site, she said yes that they use that site. THEN showed her the article above.  she said “well she is already at risk for bleeding in the brain” . Then she dismissed my concerns. 

WHY INCREASE THE RISK?!?!?!???

read the end result of the stent placement as recent as 2010 in this particular case. (the link above)

Boston no where on their site mentions the use of the stent as the recommended treatment.  (that I can find)

http://www.childrenshospital.org/clinicalservices/Site2156/mainpageS2156P0.html

I am still going to Albany for Insurance to get THE SECOND Opinion for them! (or third)

meanwhile wasting time.

It has been since MARCH Laura has waited , having more strokes in the meantime.

This tells me and any other reasonable person she needs the treatment NOW, and that the disease is progressing further everyday.

My opinion is to go with what Syracuse FIRST wanted and that is directly to BOSTON.

After the Neurosurgeon in Syracuse mentioned the use of the stent, the NEUROLOGIST that wanted to send her to Boston right away, took me aside, away from everyone, and low under his breath said that I am entitled to a second opinion and he would send her records and scans directly to Boston then for me. (where the center of  SPECIALTIES is for this RARE disease.)  He was concerned!!

Just got off the phone with her Primary care and since I had to wait on the Ins. yet again yesterday, I couldn’t get back to them till today, (Ins. called me at 6:30, and the doc office closed at 5) on Albany, so we have to wait to been seen until Monday at 10am in Albany.

But STILL it is sooner then what the Ins. could get me in Rochester.  

I am going to be on a conference call today with the Atty General and the Doctor who might be doing Lauras surgery . I am so NERVOUS. Compiling a list of questions to ask right now. Right down to the details on his experience. I wish I could get the laws changed with Ins companies and people with rare diseases, so no one else would ever have to go through this. By pass all the garbage and get right to the center of specialties. Even if it means another STATE!

Laura went back in this morning to the Doctors. She still had the fever. WORSE belly pain. they sent her right to the ER and starting running more tests. The doctor had called me last night and said they beleived it could be a virus. Well today they confirmed it.  Acute mesenteric lymphadenitis viral syndrome. Whatever.

All I know is she is sick. 

They said 24-48 hours and she should start to feel better.

Talked with the Atty Generals office today. Made some progress.(and then some…THANKYOU MOM)  We may be having her go to Strong Memorial Hospital instead of Boston. He is checking the Doctors out for me to make sure they are what Fidelis says they are. . He also got Fidelis to say they will pay for Boston if these doctors feel she needs to go there.

Any rate she needs to be seen ASAP and i can’t delay any longer. I just feel like we need to move NOW. 

of everything.. Just tired.

amazing how quick your life can be turned up-side-down.

Laura complained of belly pain, head pain,and was running a fever(is running a fever).

Took her to the Doc, did ultrasound, not her appendix. But they did find something…. Still waiting for the phone call. Also they want to see her at 8am sharp tomorrow morning.

I have been fighting with the Ins company about where to have her surgery also. ( lets put it this way, I now know why they do not have a physical address listed to find them)  I wrote letters out to the state senators mailed them today. Just have to see if I get a result quickly. Also contacted a news station to expose the dummies. well, i really do not want to, it’s not my nature..amazing what one will do for their child. 

I will have to make a decision soon weather to just let the less experienced doctors go ahead and do her operation, or fight for the ins to cover the ones who specialize in  her RARE  disease. I mean it’s a no brainer to me…THEY ALREADY HAVE ALL HER SCANS AND INFORMATION AND ARE JUST WAITING TO TREAT HER!!!!

JUST GOT THE “OFFICIAL DENIAL” FRIDAY THE 7TH .  THEY WASTED ALL THIS TIME TO TELL ME!

she should have been treated already.

so so so very unfair PERIOD.  

I HATE HATE HATE THIS SYSTEM… SO GLAD TO KNOW GOD WILL WIN.

I WILL WAIT FOR IT AND BELIEVE ME I WILL BE REJOICING WHEN HE FINALLY CRUSHES THIS SYSTEM OF THINGS AND PUTS IT TO IT’S END!!!

LOOKING FORWARD TO THE PARADISE.

not sure if this will play, but this is the LAST video I have of her before her world came crashing down on her… who knew?

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.