Winter

Today is our first snow in Minnesota... I guess winter is officially here. It's pretty now as the temps are in the high 20s but i know it is going to get cold, well freezing sub zero soon. So while its not too cold we will try sledding and skiing. And yes Mark Henry will be participating.

We purchased a new red sled yesterday and identified a local park with a great hill and warming house with hot cocoa, there are also trails for cross country skiing and they rent the skis and a little sled we can tow Mark Henry in! There are a couple local ski places for downhill, including Buck Hill where Lindsay Vonn the olympic skier started, we may check those out, but MH is a little young for that, so likely Mark and I will go when we can get a sitter.

Halloween was good it wasnt too cold but we decided ahead of time it would be best to take him to the local mall for trick or treating. We enjoyed painting a pumpkin.He loved playing with the orange treat bucket and dont worry he got lots of candy, too bad he doesnt have a sweet tooth, yet!Mark took him to the mall dressed as Woody from Toy Story, this photo was after and the cowboy boots and hat had come off. I met up with him after work- as it was my first day at my new job.

I left my old company for a great new opportunity at 3M. It is a marketing manager role in their healthcare division- skin and wound care products include; medical tapes, dressings, wound care and skin care. lots of these products are used in hospitals but also wound clinics, long term care, nursing homes, dialysis clinics etc. Its a great company and good career growth potential as healthcare is one of there 6 businesses. you probably know them for scotch tape or post its but they make so many products in so many categories. there headquarters are in st. paul but have offices all over the world.

Mark also found a part time job in retail and since finishing the training is enjoying getting out of the house, and making some money! He's not looking forward to working black friday but i figure he'll be making money instead of spending it, atleast that day (He is usually scouring the ads and making a plan to standin line I mean shop all night! : )

We finally found a full time care assistant for Mark Henry, so she is working with us m-f 9-6 which is fantastic. we also have a couple other caregivers that can fill in hours when she is not available as well as plan to set up some weekend times to Mark and I can go ski or shop or have a night out together.

We were at Mayo Clinic last week and had some follow ups for MH with several of his doctors

First we met with the orthopedic dr. He did an xray of his hips that they have been closely watching as his hips were 'loose' and at risk for dislocation and could require surgery. Good news is that even though he is more mobile and walking a lot with the walker the hips have improved. The xray looked better than previously and is attributed to the botox therapy that he had which enabled him to walk more normally and put less strain on his hips. So no othropedic issues at the moment! We also discussed his candidacy for the SDR surgery next year and the orthopedic dr agreed we should go ahead with the Gait lab in January to confirm he is a good candidiate.

Next we went to see his neuro sleep dr. He was pleased to hear MH is sleeping better and that the GI specialist we saw found no issues with his GI testing and no loss of iron due to GI. We also rechecked his iron level and found it to be stablized! So we will continue iron orally and watch his level but the infusions he had previously seems to have helped get the iron level back up and we are now maintaining it! I also think it has something to do with our new way we are making sure he gets his veggies- we steam and blend veggies and then hide them in spagetti sauce. It looks and smells bad but MH eats it right up! He has gained weight and now up to 29 lbs! He is still skinny as he is over 38 inches tall! But we have weened him off the Pedisure which saves our wallet, that stuff is so expensive and he was so addicted to it! but now he is just drinking regular milk.

Last we saw his physiatricts and our favorite dr. she is the one who has a 4 year old with CP who had the SDR surgery this year. She assessed Mark and was happy with how well he is doing. We chatted more in depth about planning and expectations for the SDR, Selective Dorsal Rhizotomy surgery next year. We are planning to do the Gait lab in January- that will require them to hook up sensors all over his legs and then get him to walk for several hours so they can get lots of data on how he walks. He will have to walk with and without the walker and his leg braces. Its going to be a long day but we think he will do ok as he loves to be in the walker.After the gait lab the team of docs analyze and review it and discuss approving/ recommending the SDR surgery and timing for next year.

We have a follow up set up to get the results on valentines day. It will be a big deal if they approve him and then planning for the main event. He will be hospitalized for several weeks and in ICU the first few days. He will have inpatient therapy intensively for several hours a day until they release him home. Once home the therapy will continue at home for a month and then for several months as full rehab is one year. His legs will feel very different and he will have to re learn to sit, stand, crawl and hopefully walk independently.

He just got his new candy blue wheelchair and it is great. He rides in it on the bus to school and we use it a home for seated activities. He is learning to move it on his own by rolling the wheels. It will give him greater independence than being in a stroller and he will need it after the surgery while in rehab.

Mark Henry is gaining new skills all the time and most recently started to use a crayon to scribble! for the longest time he just would play with the paper and try to eat the crayon- so this is great progress. We are also working with play-dough the edible homemade kind just in case he tries to eat it. he is very sensory so everything still goes in his mouth as he attempts to understand his world around him. He is more vocal but no consistent words, we are working with sign, message boards and the ipad. we are going to stat some private speech therapy again, to encourage communication, as well as PT- we want him as strong as possible before the surgery.

Wishing you all a Happy Thanksgiving and enjoy time
Several people have asked for our new address so here it is:

9917 Cavell Circle

Bloomington, MN 55438