Ambrose turned 3 on January 19th!

Here are some pics from Ambrose's historic third birthday party. It was a modest party with Mommy, Daddy, cat Lucy, nurse Meghan, EI Mary, and many stuffed animal friends. Ambrose conked out pretty early on from all the excitement.

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.