Monday, March 16, 2009

Hi! - Samuel update

I'm sorry for neglecting posting. We (of course) have been so very busy and adjusting and simply . . . finding our way. We've had tremendous "highs" and oh-so devastating lows concerning coping and finding our way.

BUT . . . oh my goodness we are good. No, we are not good . . . we are super-fantastic!! We are joy-filled. We are celebrating life and family and love. We ARE family. We fuss and fight and share and console and tease and taunt and play. We SING.

And specifically there is Sam. I tell my children that I simply cannot mention his name without grinning and looking down just a mite and shaking my head. Sam is . . . SAM!! He has this infectious spirit that is both inspiring and frustrating. His volume control is most often set on sonic-boom level and I probably correct him for using his "outside voice" more often than all other things combined. He is lively. He is vivacious and funny and STUBBORN. I have photos that I will try to post as well as video.

Sam scoots around our house using his right arm and his bottom/upper legs. He has a gait and scampers often that resembles a crab on the beach . . . often going more sideways but able to maneuver. He often will urinate in the toilet by being lifted backwards on the seat and allowing his legs to rest on our elongated frames. His only current "dressings" are tube socks that help the moisturizing cream/lotion keep his significant skin grafts supple - we discovered that if we are lax then his skin becomes almost calloused and prone to discomfort.

Sam's left arm is still flaccid. We went specifically to address it last month and when the doctor pinched his upper arm (above where the extensive injury/amputation occurred) Sam promptly squealed and responded by pulling the doctor's rather prominent knuckle hair. I was mortified and highly amused at the same time. Our EMG scheduled for this week (to test nerve/muscle viability) has been postponed until April 1st. It is hard to decide what feeling he may have above that amputation site because Sam LOVES to squeal "ow" even when he cannot feel. There is definitely something more than damage below the amputation site and they think that maybe his brachial plexus (chest/shoulder) was injured.

Sam's manual wheelchair has been configured and is ready for delivery. We should receive it on 3/24/09. I am reminded once again of the goodness of God and the support of community. The MANUAL chair was over $3500 and the funds from the benefit will supply Sam a way to maneuver himself. The power wheelchair is still caught in . . . paperwork?? I've struggled these past months dealing with paperwork and things changing without notice.

We returned to the clinic earlier this month and Sam amazed especially Dr. Sato and his staff. He was removed of any restrictions concerning his hip and can weight-bear. We were given a prescription to assess and treat him for physical therapy again to begin to learn to knee-walk and even crawl to move closer to having prostheses.

And Sam has begun doing this himself. He loves a challenge.

We are still waiting to hear from Shriner's Hospital. We would prefer Sam be treated there as with this economy and the instability of employment - it could be detrimental to the continuum of care for Sam if we change carriers and possibly have his providers suddenly become "out of network" or even worse . . . get hit by a pre-existing clause for a period of time. We realize that Sam should be considered "disabled" but until his social security card arrives we cannot even apply. It should be here hopefully this week.

And of course there is the ostomy. We are fine with it. I have battled blow-outs and Sam unclamping it and such. The stoma has remained so very healthy and any hint of skin break-down has been resolved within a day . . . that only happened twice.

Sam is proud of his body, as are we. It is neat to be able to wave your "feet" at people when in a wheelchair. We don't call Sam's legs "stumps" . . . they are still his legs. We may refer to his leg below-the-knee as feet. We admire how the pigment is developing from both the graft donor sites and placement sites. One leg (the right) has MUCH more soft tissue and we marvel at how each leg is different and beautiful. Changing Sam's ostomy bag is a source of interest with his siblings and he gets great pleasure if he can pass gas during the process. He will often kiss the fingers of his left hand (lefty) when we are dressing or adjusting his Aquaplast splint. I have to watch him carefully in not wrenching or twisting that arm since he doesn't feel it well (if at all).

Sam is best buds during the day with his now 3-year-old sister Julia. They are cohorts when their older siblings are away. Julia acts as Sam's legs (or fetcher) and Sam in turn is Julia's mouthpiece (she is in speech therapy due to her being born with a cleft lip/palate). During their nap time, Julia sleeps in Paul's bed simply because they cannot stand to be separated. Once the school bus arrives, all bets are off as to if they will tolerate each other or not.

Life here is crazy and chaotic and wild and wonderful and an adventure. Parenting isn't for sissies (and I can be one at times) but goodness gracious we have come so very far and I cannot even begin to fathom as to where God will lead us from here.


Rebecca Smith said...

Thank you for the wonderful update. You all continue to be in my thoughts and prayers daily. I admire Sam's spirit and your entire family's ability to find the love and happiness God intends in everything He gives us. You have a beautiful family!

Lisa said...

Thanks for the update Carole! I think of you guys often:-)

backporch630 said...

Thank you for the wonderful update. I have Samuel in my daily prayers and I love hearing how much he has accomplished and continues to progress. Thank you so much for allowing us all to be witnesses to God's miracles in your life.
Bountiful Blessings
Michelle in Kansas

Lisadiana said...

Wow! You've come such a long way. Way to go Mom!

Elizabeth Bergeron said...

Sam, what a very special young man he is!! He has faced so many challenges in his young life and has many to go. Isn't good that he has such a "spirit" about him!! Hard for mom at times, but definately one that will get him thru the tough times ahead. Hugs to all of you!!