Merry Christmas 2010!

Legs and Lights

I was just reading back over the small number of post I have made this fall and they all seem to focus on fevers and illness. Sorry about that. He has been well a lot too.

Of course he has been up to his usual trick of staying up all night.

The most exiting thing is that he has been SMILING a lot more. His smiles are small and hard to capture in pictures, but we are seeing them and that is wonderful!

He got new KAFOs (knee-ankle-foot orthotics) which can be worn over the AFOs or alone. These replace his old velcro knee immobilizers, which weren't working too well. The problem is his incredibly tight hamstrings, or "hamsprings" as his EI recently dubbed them. His keeps his legs bent at a 90+ degree (why is there no degree sign on a keyboard?) angle. He wears these for an hour at a time for stretching. These new ones have a hinge at the knee which enables you to put them on his bent legs and gradually tighten them. We only go as far as is comfortable and hopefully will eventually be able to get them to loosen up. I have posted a picture of him getting cast for them a few months ago (while wearing his AFOs - notice how bent his free leg is) , and wearing them recently.

Brosie has been enjoying playing under the Christmas lights. He really seems to be seeing and enjoying them. I hope so! Tonight we put up the Christmas tree.

Happy Thanksgiving!

Little Ambrose was sick again a couple of weeks ago. He had fevers up to 104.5. He started another course of Bactrim, complicated by a pharmacy error causing him to get too big of a dose, which resulted in some bleeding in his stomach. GRRRRRRRR!!! A couple of days later he was wheezing and very uncomfortable. He was put on a 5 day course of steroids. Within 12 hrs he was doing so much better. Again he was able to recouperate at home. Yeah!

I have enjoyed a week off of school in which I got to spend much more time with Brosie and we all enjoyed a wonderful visit from our dear friend Lisa. She drove many hours to cuddle Ambrose. As you can see, he has had a haircut since his cheeseburger pics.

I hope you have had the pleasure of watching the videos in the previous post. If not, you must do it now.

Wonderful videos of Brosie at play

Please note the yellow submarine jamies.

Tom's Diner Part 2, 11/24/10

Hey I just noticed we are now at well over 10,000 hits. Yeah! Thanks everyone for your interest in my darling boy!

Cheeseburger in Paradise

Ambrose dressed as a cheeseburger for Halloween. I cannot take credit for making the costume, it is from Old Navy.

Wow! November already!

I cannot believe I didn't make a single post in all of October. Pathetic! Yes, I am very busy, but that is unacceptable!

My darling Ambrose is doing well. He is up to his old tricks of staying up all night, being cuddly, looking cute, a kicking like a madman. He is using his hands a bit more.

One exciting things is that I was contacted by a recent graduate of Dartmouth Medical School. She met Ambrose and I last year while she was working with Ambrose's neurologist. She is now writing a paper about Taybi-Linder syndrome, focusing on the neuroogical aspects. It will include a case study of Sophia and Ambrose. I am very excited as NO ONE has been doing anything about this syndrome. It is so unknown and it seems that no one is interested since the geneticist who it is named for retired many years ago. She asked me for pictures and I have sent several that show their unique features but also show them to be human and special and not just clinical case studies. I hope that comes across some how in this paper.

I still can't figure out how to get more that 5 pictures to post, so I will add another post.

At last...a new post!

Well....Brosie had appeared to be getting better after that last post but spiked high fevers (104.5) again, had a bad rash around his trach (from the antibiotics), and increased O2 needs. He went back on the vent and started Amoxicillin. I took a trach culture and the doctor took a culture from around his trach. Both grew the dreaded MRSA (antibiotic resistant infection) and the trach also grew Hemophilus influenza. He switched to Bactrim for another 10 days.

I was very stressed, thinking that perhaps I brought this home to him from work. I went to the doctor, as I had a bad cough for weeks. I got tested for MRSA and do not have it. I was very glad that I did not give it to him. I suspect he got it on his last hospital admission. He has gotten hospital acquired infections there before: the Norwalk virus, when in the Intensive Care Nursery, and C-Diff, when in the PICU. Sophia got urosepsis in the PICU. She nearly died.

The good news is that he finally seems better!

Isn't this the greatest picture!

It is hard being away from Ambrose so much now that I am in nursing school and working. Fortunately we have found another excellent nurse at last! Ambrose is loved and adored by his nurses: Cheryl, Cynthia, and Rebbecca and we are very thankful for them!

Much Better!

Ambrose has been on the trach collar (OFF the vent!) for 12 hours and doing great! (About to go back on for the night. I guess we're back to night use only. Horray!) He's still up on his O2 but will take a while to get back down. Just finished his last dose of Cipro.

My little sick boy

Poor Brosie has been sick for weeks. He has had fevers coming and going for the last 16 days (as high as 104.5 degrees) and increased secretions. Then, a week in, as he was seeming to be feeling better, the nursing agency sent us a pediatric nurse with 20 years experience. After one day of training the agency insisted she didn't need any more training because she was so knowledgeable. Despite the fact that she had observed a feeding and learned that Ambrose's g-tube bolus feedings need to go in over at least 20 minutes, she dumped the entire feeding in in about a minute flat and took in upon herself to flush it with a quantity of water almost as large as his feeding, clamped off and removed the G-tube extension, before I even knew she had started feeding him. He immediately started vomiting forcefully and had prolonged desaturations into the 70s while he choked and gagged. That evening his fever spiked and he began needing more O2. (I didn't even mention the sloppy, unsanitary suction technique she attempted to use, suctioning him too deeply, and putting his trach ties on dangerously loosely. Needless to say, she will never be setting foot in my house again!)

Now he has had 5 days of Cipro (following 7 days of Omnicef) and has been on the vent around the clock for the last 5 days, with increased PEEP. (If we didn't have the vent at home he would be in the PICU for sure.)

Meanwhile I have gotten sick myself after being run down from staying up suctioning Brosie night after night and worry that I then exposed him to a new illness, started nursing school last week, and am down a nurse. Stress!

Please get well soon Brosie!

Fun in the Yard

These are some recent pics of some summer night fun in the yard.

Ambrose has been doing very well. A few weeks ago I was afraid he was getting sick. The fevers and increased secretions he was experiencing seem to go hand in hand with the 3 molars he has coming in. He still has some crying spells which break my heart. Ambrose hardly ever cries, but he can. Which just goes to show that he is generally a VERY HAPPY BOY!

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.

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.