Our holiday card.
The tree and Dear Son's glider chair (above) and the foyer (below).
The armoire (this is my pantry) in the dining room of my apartment (above). Picture of our short legged kitty giving Dear Son's picture a kiss (below).
Photo of Dear Son's long legs (below) followed by the three drawer chest in the living room. And lastly, a picture of Wiggles the cat in his Santa hat. I made him and Dear Son wear them at the same time. Wiggles actually allowed me to put it on this year (probably because it made Dear Son laugh) and take some pictures of it.
The last few weeks have been a little more challenging than most. Typically, Christmas break or any school break takes a lot of my time. More often than not, it means twenty four hour a day care. Normally, Dear Son attends school for part of the day. The school days make it easier in terms of care since school does the lunch feeding as well as a few diaper changes. As Dear Son has grown, the amount of physical energy it takes to care for him has increased. Simple tasks, like rolling him over at night are different now that he is quite tall and heavier. I apologize for not posting much but I haven't had much of a break. Dear Son's father has taken him overnight tonight since I work tomorrow so I had a few hours to catch up.
Dear Son's seizures seem to have increased as well. We had some excellent results in early December following an increase in his Vagus Nerve Stimulator. For the first two weeks of the increase, he only had one really bad seizure. Since that time, things have deteriorated a bit. He seems to be much more agitated along with several seizure type episodes. In addition, he is not able to control his saliva very well so there is more night time choking. I suspect this is another indication of possible seizure activity. We are scheduled for an extended EEG monitoring in January to determine exactly what is happening. Dear Son's seizures have changed over time; we have times when he does not show outward signs of a seizure and yet, the EEG shows otherwise. His EEGs are always abnormal, however some of them tend to be worse than others.
Christmas was rather nice. We went to Grandma's house for Christmas dinner. The most challenging part of any invitation is getting Dear Son into and out of the car. Dear Son's father came on his lunch hour and lifted Dear Son into the car for me and then went back to work. I had other family members that helped me get him in/out of the car and assisted me with the hoyer lift throughout the day. Unfortunately, things didn't go as well when we got home. The driveway was a sheet of ice. I was able to place a 5 x 5 foot mat on the ground so I could lift Dear Son out of the car and into his wheelchair. The mat would prevent slipping and falling on the ice. Unfortunately, Dear Son was exhausted from the day and could not sit up any longer. When I attempted to lift him out of the car, he pushed back to lie down. When he did this, he slid off the front seat and onto the floor of the car. I was able to lift him back up on the seat however he leaned back again and when I lifted him he went down on the ground. Luckily, I had the mat beneath him. He wasn't injured at all and I held him as he went down so he didn't get hurt in any way. I did have to call 911 and have the paramedics come help me lift him off the ground. I explained that there weren't any injuries and that he was just exhausted and could not weight bear. One of the paramedics recognized Dear Son from a previous call. In the end, when I asked them for what information was needed (for billing), they declined and said to, "Have a nice evening." All in all, a nice holiday.
I am posting a few Christmas pics from this year as well as our holiday card for 2008. I prefer to take Dear Son's picture in a regular chair, as opposed to his wheelchair however this may be the last year for that. As you can see from the picture, he can't sit up very well at all anymore. I put him in the rocker since it supports him more than the glider chair. He didn't smile this year although it was probably because he was working so hard to sit up.
As always, thank you for your support throughout the year and your interest in Dear Son. We hope you have a wonderful 2009.
8 comments:
DS looks all growed up! That was awfully sweet of the paramedics to comp the visit.
Mr. wiggles looks cute in his hat!
happy holidays!
:-D)
You write lovely posts, Dream Mom. No matter what you are describing I hear you in a calm and comforting tone.
You might want to look at the blog Maggie World. Maggie's mom struggles with some of the same issues you do, and she expresses her love for her daughter beautifully in her blog.
http://sfmaggie.blogspot.com/
Barbara
Merry belated Christmas and Happy New year to you Dream Mom, Dear Son and Wiggles.
We wish you good things for 2009. We know you go into the next year facing more challenges than ever before, but we know that you can handle whatever the year throws at you.
You are in our thoughts, and we send you big hugs from across the ocean.
Julie and Poppy Q
xxxxxxxxx
Look at that handsome boy! Even without his usual smile he is a sight to see. You take such good care of him.
You are an angel.
Merry Belated Christmas and Happy New Year! I am curious, couldn't some sort of strap/harness be put on the rocker to help hold him up so he could enjoy sitting in it a bit longer? And I agree with the others, he is a handsome young man even without his sweet smile.
Best,
Karen
Happy New Year, Dream Mom.
Lots of hugs at seeing your son's condition progress, but through you eyes I truly appreciate your wonder and love. Thank you.
And a very happy new year to you and Dear Son also. I hope the coming year holds many wonderful things for you both.
Deborah
Post a Comment