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.

Tactile things Part 2

If you haven't already ready read part 1 of this post please scroll down to read first. Thanks.

Here I have pictured one of the few things I have made specifically for Ambrose as he has all of Sophia's things to play with. That picture is from his first birthday and I made him a sun with 12 rays, one for each year of his life. Unfortunately he does not use his arms and hands as much as Sophia. He is all about the legs. He does touch and bat at things but doesn't open his hands very much and definately is a lefty. I am trying to teach him how useful those hands can be.

Also pictured is Sophia in her "sensory dress." (She only wore it a couple of times.)

Sophia and Daddy with one of the "Discovery Quilts", the first items I made to sell.

Sophia on her Throne, and throne in progress. Made from tri-wall cardboard by a couple of members of Sophia's educational team and myself at the Perkin's School for the Blind's adaptive equipment workshop. This was really amazing because it was custom made to her proportions so she could actually bend her knees over the edge of the seat and rest her arms on the arm rests. This had never been possible before due to her short arms and legs. Hurray! Unfortunately Ambrose can not sit in it as it is too upright for him. His hips and hamstrings are so tight so he is more limited in his seating options.

If you haven't seen it already please watch the Wiggle It video before it drops off the bottom of the page. Or you can find it in the archive menu: title: Wiggle It, date: Friday, March 12, 2010

It's his best video yet!

Tactile things Part 1

I began making tactile play things for Sophia when she was very little. With little if any vision and limited hearing and mobility most commercially available infant toys did little for her. In her case her hands were her eyes. She didn't have fine motor skills but liked to touch things. And with short arms that she didn't bring to midline it was hard for her to be able to reach things on her own as well. The creative skills I honed during my four years at Moore College of Art helped me to design numerous items over the years. I first made a cloth book with crazy trims all over it. Eventually when I learned to knit, taught by a doctor in the PICU, I made balls with highly tactile yarns and jingle bells inside and eventually a "sensory dress" I hoped she would be able to touch and explore while she was wearing it. I made a board to fit over her tray table that I glued all kinds of interesting feeling objects that I had been collecting for just this purpose. I also made a patchwork fabric tray mat to fit over her stroller tray. I got lots of positive feedback on these items from all of the specialists that worked with Sophia. I made a series of "discovery quilts" and tray mats made of black, white, and red (the easiest to see colors for infants and visually impaired individuals) highly tactile fabrics and sold them at the Perkins School for the Blind annual conference for parents of preschool aged children. I eventually started a website called sensoryplaythings.com. Unfortunately people rarely stumbled upon it in the vast world of cyber space. I did make occasional sales and got positive feedback. I took the site down with the intention of redoing it quite a while ago but that never happened. Last year I submitted my traymat design to the Abilitations catalog. They are the largest catalog of special needs equipment and are known to produce items designed by special needs parents occasionally. They did a year of product testing with developmental specialists. They will make them and give me royalties on sales and I am still allowed to make and sell my own if I want. They just came out in their April catalog. I must say I'm disappointed. They don't look as well made, don't have as many different fabrics, and are not shown attached to a tray or being played with, so unless you stop and read the description you probably have no idea what they are supposed to be. Additionally they are shown at the same angle and are similar shape to a tank top/vest on the facing page. Oh well. We'll see if anything comes of it. I don't have time to be making them right now anyway, but they could have done a much better job.

I will post another entry showing more of the items I've made.

Boo Boo Legs

Little Brosie had 3 vaccinations (Hib, PCV, and Dtap) yesterday and is experiencing fevers and hives. Poor little guy!

Nice blue camoflage bandaids, huh? His Daddy said we wouldn't be able to find him in the blue forest.

He was also up most of the night coughing but I don't see how that could be related to the vaccines.

He is now 29 1/2 inches tall, which is as tall as Sophia got, and 23 1/4 lbs. He is the size of an average one year old. He is 28 months old.

Ambrose is doing great. He has been spending all day (13-14 hours) off the vent. I just hook him up to it when I put him in bed for the night.

About a week ago he spit up 15 times between 3 am and 6 am. (He is on a feeding pump over night.) Then he was fine. It happened about 6 weeks ago too. He had a Nissen Fundoplication when he was about 9 weeks old. This surgery wraps the top of the stomach around the bottom of the esophogus to make it a one way valve so food can go down but not come back up. He had severe reflux prior to this and could barely keep any thing down. About a year ago he started being able to spit up and generally does it a couple of times a day. They checked it by upper GI when he was hospitalized in Feb. It was still intact but may have loosened up a little.

Sophia also had this surgery but not until she was 1 1/2. Prior to it she had 3 life threatening (8 weeks in PICU on vent) pneumonias. After she was much healthier. I really think it saved her life, which is why we got it so early with Ambrose. Hers also loosened up and she did seem to aspirate her spit up and got sick. We had to admit her to a different hospital as our usual hospital had no room available. Their solution was to put in a G-J tube in place of her G-tube.

In this case there are two ports inside- one that goes to the stomach and one into the small intestines. Medicines and anything that isn't a thin liquid have to be put into the stomach. What goes into the small intestine cannot make it back up. The problems are that it has to be placed in interventional radiology using fluroscopy. It cannot be changed at home. The tube is very narrow as there are 2 openings in the same diameter that used to have just one and it clogs very easily. We were constantly struggling with trying to unclog it. Believe it or not you use Coke to do this. Also she steadily lost weight as you cannot absorb as much of your nutrients in the small intestine. Fortunately she had extra reserve from steroids and thyroid issues.

Wow. I didn't intend to write a big thing about that. Hope you learned something.

I will post more cutie-pie pictures soon.

Thanks for reading and have a great day!

Brosie is my Hero!

Brosie is up to spending about 11 hours a day off the vent. Hooray Brosie! He is my hero!

Pretty soon it'll be just over night! He doesn't seem to notice the difference.

My sweet baby boy!

Weaning!

My darling boy has been weaning from the vent for a few weeks now. He went from a PEEP of 8 (CPAP) to 5 and off of pressure support during the day and back on at night. Then about a week and a half ago, I was inspired by the beautiful weather and I started taking him off of the vent (and onto the trach collar) for a few hours at a time. He's doing fine with it. He has gone for several walks and sitting on the deck with Mommy and Daddy. He's currently spending about 6 hours off of the vent per day. I think he would be fine with being off compeletely, but I want to go slowly and use it preventatively to try to keep his lung open and healthy.

He gave me 5 heavenly nights of sleep in a row a few weeks ago but has been back to his up all night schedule. I was just learning in my A & P class that the hypothalmus regulates our sleep-wake cycles. Perhaps that is a factor as well as his blindness.

Everyday I try to celebrate the joy that is Ambrose! I feel so blessed to have him on loan to me from Heaven. I am so proud of him and in awe of him. But sometimes it is hard not to be painfully aware of all the things that he will never be able to do, that we will not be able to share with him. And of course I am constantly aware of his mortality. I want him to stay with us forever!

Before and After Mommy Cut My Hair