Brose Videos

Here's a glimpse of Ambrose's recent activities. The second 2 feature him playing with 2 special toys that were recently passed along to him from the Momny of a special little Angel friend of Sophia's named Talia. The second one is a switch activated bell carousel, which I believe is actually loud enough for him to hear without his hearing aids. I was very excited to receive this as I had actually selected this as one of the toys I got from Make a Wish for Sophia's sensory room, but I had passed it along to someone else. Unfortunately the video cuts off before he reactivates the toy himself.

I don't take Ambrose out very much as I worry about exposing him to germs. Summer is his big chance to get out. We've remained cooped up too much lately due to the intense heat and humidity. I finally took Ambrose out for a walk today and we got caught in a downpour. I didn't mind but it sure did surprise Brosie.

The last time he'd been out anywhere was July 4th, when he got to go to a barbeque and parade. I've been meaning to post these pictures earlier.

Ball Pool

Well we finally got the rest of our stuff out of storage since our move last fall. This is the ball pool that was part of Sophia's Make a Wish sensory room. It is currently living in the middle of our living room floor along with the slide ( the only way to make a proper entrance into the ball pool of course.)

Ambrose holding Sophia

This wonderful photo was taken by Ambrose (and Sophia's) nurse Rebbecca. This is Ambrose's lovely little hand holding "the Sophia necklace." It is my special necklace that contains some of Sophia's ashes. I only take it off when I shower and then Brosie holds it for me. The rest of the time I wear her right over my heart.

Father's Day

O2 break

This afternoon while Brosie was napping I tried taking off his oxygen as he was satting 100 on just a whiff of O2. He satted 93-96 for 45 minutes. This is quite remarkable as he is totally O2 dependent. When he woke up he needed to go back on.

Scrabble

Yesterday, James and I played Scrabble. Despite the fact that he was leading me by over 100 points, I instantly won the game by spelling the magic word: "Ambrose."

Crappity Crap Crap

We are facing the possibility of losing our nurses. Which can't happen.

When Sophia was with us we had nurses who worked through an agency.

That agency then announced that they might go out of business. Instead, they

were purchased by another agency which supposedly specializes in serving

high tech pediatric clients. After Ambrose was born, the discharge coordinator

from the NICU tried to arrange for him to get home nursing through this agency.

They would not take him on as a client because they apparently had people on waiting

lists. THe head of Medicaid spoke to them on our behalf. They strung us along for a

while, then said no. Rebbecca, one of Sophia's nurses went to the agency and said, "hire

me to take care of Ambrose." They made her jump through a bunch of hoops, then

told her they would hire her but they still weren't taking Ambrose.

Eventually we were directed toward the family managed high tech nursing program.

There are 5 families in the state that use this program. You have to recruit and train

your own nurses. They become Medicaid providers and are paid directly. This has

worked out fine for us until last week. I received a letter stating that the Dept. of Labor has

determined (after investingating a lawsuit a nurse brought against a family) that the nurses do not meet their criteria of "independent contractor" which they were being treated as. They determined that the family is considered the employer, not the state, and are required to provide unemployment and workers compensation .

insurance for the nurses. We have until July 1.

If he was served by a nursing agency, as he should be, this would not be our responsibility.

I cannot lose my nurses or I could not work or go to school. Nor can I afford to pay for this. (We don't have figures yet as we are waiting to get specific payroll info.) Also, the nurses don't want to lose their jobs! They love Brosie and are very dedicated to him and us.

The Medicaid guy is trying to compel the agency to hire my nurses to take care of Ambrose.

He thinks things may be different now with them as they finally have a new pediatric case

manager. In a way this would be an ideal solution but it would probably mean lower saleries for the nurses which is not good. Also, a week has gone by and they are still "playing phone tag."

The clock is ticking!

Our Children with Special Health Needs case manager is trying to help find out the insurance

costs and if there is any fund to help pay for this but she doesn't seem very optimistic about being able to cover it all.

Crap!

I was going to post this a week ago but wanted to give my post about my dear friend Ben some time.

Sophia and Ambrose's friend Ben passed away today, age 8.

This morning Benjamin McKay Orton passed away in his bed with his mommy. He was 8 years 1 month and 25 days old. Please visit the link to his blog to read about this special boy. He had severe microcephaly.

I first met Ben and his Mom Becky during Sophia's first stay in the PICU. Ben was 15 months old and Sophia was 5 months old. We often wound up there at the same time. Shortly thereafter Ben got his tracheostomy. Unbeknownst to me at the time Sophia would follow in his footsteps a week or two later. The PICU attending, who knew we were friends, referred to Ben as Sophia's boyfriend."

I never got to know Becky all that well but we shared some bonding experiences in the PICU, worrying about our very special children. I was always amazed by her strength. She has 3 other children and always seemed to find time for everyone and to include Ben in everything. Please keep his family in your prayers.

Jimmy (Ambrose's Daddy) said Ben and Sophia are running to each other, hugging and spinning around. I love to picture them doing things they could not do in life.