Special Needs Spotlight

This amazing fellow limb difference mom has an awesome blog that I adore and follow. Her blog is called This Little Miggy Stayed Home and you should definitely check it out. Each Friday she spotlights a different child with special needs and their amazing family. This last Friday she chose Jameson!  Here is the link to Jameson’s Spotlight http://www.thislittlemiggy.com/?wref=bif  OLYMPUS DIGITAL CAMERA

If you would like to participate in one of her spotlights or know anyone who would, please email Miggy at thislittlemiggy at gmail dot com.  She asks if you could please include a brief summary of your child and their condition, along with links to your blog and pictures if applicable. Thanks!

Here are some other recent spotlights she has done:
                                                          Albie (multiple heart conditions)
                                                          Mary Cate (apert syndrome)
                                                          Brayden (born with left eye, hearing problems)
                                                          Jack (cerebral palsy)

Green Family part 2 (adoption, multiple kids with special needs)  Green Family part 1 (adoption, multiple kids with special needs)

                                                          Raphael (down syndrome–looking to be adopted)
                                                          Emma-Kate (Pallister-Hall)
                                                          Aviana (traumatic brain injury)
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Jameson’s National T.V. Debut!

Our little trip to Hollywood, California

A couple of weeks ago, out of the blue, we were contacted by a producer at the daytime talk show “The Doctors”(a Dr. Phil spin-off with more heart-felt and educational stories). She said that our story caught their attention and thought it would be a great fit for the show. After talking to her briefly, she asked if we would be interested in flying down that next week to share our story on the episode “Medical Mindsets That Change Lives”? We were so very surprised. At that moment we were trying to think of how we could possibly just up and fly to L.A. so suddenly? She explained that airfare, hotel, and food would be covered and there would even be a driver to pick us up upon arrival.  So, Jim and I turned to each other and said “Wow, this is awesome, oh my gosh, this kinda thing does not happen everyday or ever!”

As nervous and unsure as we were, we were in! But, I am not going to lie we were a little bit terrified. After all, it is such a personal story for us. Even though we have gone public with local news and many people have read my blog, we still felt intimidated to share our struggles with the ENTIRE nation and not to mention a live audience. To help ease fear and add an element of expertise on prosthesis, Jameson’s Prosthetist Mac Lang was also invited on the segment to explain the science and the many options available today and in the future. Many loose ends at home had to be tied up but we knew that this opportunity could not be missed.

Overall, the experience was incredible! Everyone at “The Doctor’s” show could not have been more kind, encouraging, and professional. Plus, we were able to do a little site seeing, Jameson did pretty good at flying for the first time, and no one freaked out during the taping (as in me, I was so nervous)! Yay!

Our official dressing room!

Our official dressing room!

First time flyer:)

First time flyer:)

Speaks for itself ( @The Famous Grauman’s Chinese Theater)

Morning View of LA from our room

Morning View of LA from our room

Walk of Fame

Walk of Fame

Grauman's Theater-"Beautiful Creatures" Premier

Grauman’s Theater-“Beautiful Creatures” Premier

Oh yeah!

After the show

Site seeing

Site seeing

Hollywood!

Hollywood Sign! (you could see the sign from our hotel)

On our way back home, goodbye Hollywood!

On our way back home, goodbye Hollywood!

Needing New Hands Already?

Jameson, my precious little cutie patootie!

Jameson, my precious little boy!

My husband Jim and I were a little shocked the other day when Jameson’s prosthesis would not fit. Gosh, already? It was a little unexpected that our little guy out grew his first set of passive arms so quickly. Yes, kids grow fast, but goodness we’ve got a wild weed here! I guess I should not be surprised because he has worn size 12 month clothing since about 9 1/2 months. We just thought for sure he would be in this set of arms until the fall. Keeping up with his wear schedule at this point is pretty crucial in the whole process of learning how to use the prosthesis, adjust to them, and tolerate them. This process will get him ready for his really important next set, his myoelectric “hands”. Ideally, he will be ready for the myos at 18 months.

Luckily, we have been scheduled right away for the next available appointment at our prosthetic company Advanced Arm Dynamics. We leave this next week. Of coarse, they were wonderful and said not too worry they will adjust the prosthesis and get Jameson back on track! This major growth spurt was not at all a shock to AAD. I on the other hand, am still a little surprised. Or maybe I am in a little bit of denial, I want my baby to stay a baby. Don’t all mothers want that?!

My other concern is that he is probably going to need a lot more prosthesis than we originally expected.

A major question now is this: just how many sets is he going to need? Jameson is a growing boy and a fast one at that. Looks like we’ve got a long journey ahead of us with fittings, fund-raising, and faith that we will be able to provide our son with what he needs to lead a more normal life.

High Fives And a Thousand Hearts Fund Raiser

tuckered out

11pm and all tuckered out. But still has his tie on:)

Last Saturday we were so blessed to attend the High Fives And a Thousand Hearts For Jameson Fund Raiser! Of coarse Jameson was the guest of honor and made it until 11pm:) Pretty good for a 10 month old who usually goes to bed at 8!

This event was put together by Michele Kelly, a very considerate and loving woman who, out of the kindness of her heart, donated this evening to Jameson. Originally, this was a prize that Michele had won and was going to celebrate with her friends, family, and colleagues. Instead, after recently finding out about our story she decided to give up her night and make it an occasion to help raise money for a baby and a family she didn’t even know.

Located at a local event and catering company, those in attendance enjoyed live music, dancing, catered food, drinks, meeting new friends, and lots of amazing raffle prizes! Each prize was donated by very generous and kind people from around our area. Thank you to all that donated, you are awesome!!!

raffles!

Callin out raffles!

If that wasn’t enough, we were amazed to meet a new friend and fellow congenital amputee Carrie Davis. Carrie brought new information to us about Hanger (a prosthetic company here in our town). Jameson was offered future services to their clinic and presented a wonderful opportunity to attend Camp No Limits. An amazing summer camp for kids with limb loss or differences. The camp offers support, mentorship, and education to the kids and their families, to learn more click the link above:) Pretty cool stuff!

Carrie holding Jameson, she was wearing a prosthesis on her left arm

Carrie holding Jameson, she was wearing a prosthesis on her left arm

Michele worked very hard on this and overall raised $1,530.00!!! Yay thank you Michele. I would say that the fund-raiser was a great success in many ways! And thank you again to everyone that participated, donated, and came out to support!

Cake pops at the event wtih Jameson on them

Cake pops at the event with Jameson on them

Michele and I

Michele and I

RAffles

High Fives All Around!

High Fives All Around!

Jameson is 10 Months Old!

Well, tomorrow anyway!

Jameson at 10 months

  • Has 6 teeth! Wow and they are sharp
  • Loves to use those teeth to bite ANYTHING, including me
  • Is crawling (in his own baby turtle way) and is very quick
  • Kicks his feet like crazy, will be fun to see him in the pool this summer!
  • Wants to play with anything he is not supposed to
  • Favorite non-toys: jewelry, strings on your sweatshirt, Tupperware
  • Loves his doggies, he giggles non stop when he pets them with his feet!
  • Weighs 20 lbs and is 2’5″ tall
  • Wears his prosthesis everyday about 3x a day
  • Flew in an airplane for the first time last week!
  • Sleeps through the night finally. Well, he has since about 7 months, but it is worth mentioning!
  • Eats crackers and snacks all by himself, still trying to figure out how to help him use the spoon though
  • Loves all kinds of food (thank goodness we don’t have a picky eater) yay!
  • Has a real fascination with ducks or yellow birds. He lights up and squeals when he sees them, it’s quite funny
  • Favorite song we sing to him: “Rubber Ducky”
  • Takes 2 naps a day (I will be sad when he gives those up)
  • Still loves stroller and baby backpack rides
  • We think he may be left-“handed” which is weird to me for some reason, maybe because no one else is:) But very cool indeed!
  • Words: Dada, mama, dog dog (I think) and a whole lot of some other language that sounds kinda like Russian.
  • Smiles all the time, Jameson is a very happy little guy!

10 months

Hanging Out With Momma!

Jameson is getting really good at crawling in his own way! In fact, this is all he wants to do all day. He knows he is Jameson now and we try to get him to come to us when we call his name. Before he would just ignore us and go the other way, silly boy. Last night we practiced his “come here”on mommy and daddy’s bed. It was so cute!crawling 1

crawling 2

crawling 3crawling 4

crawling 5

crawling 6

crawling7

The Need For His Hands

As some of you know, we have been in the media a little bit lately! We are telling our story and the need for Jameson’s prosthesis. We have received so much positive feedback which has been wonderful! But, I am finding out, that there are a few negative Nelly’s or Nancy’s, or whatever you call them. Some people are judging our decision to have our baby fitted for prosthesis. I understand that everyone is entitled to their opinion. That is fine. I just want to clear the air, so to speak, and let everyone know just why we feel the need for his prosthetic hands.eating cracker

I had one mother directly compare her child born missing one hand to Jameson. That to me is like comparing apples to oranges. I’m not saying that missing one hand is not difficult, I’m just saying that’s a far different scenario. In fact when I was still pregnant, I sobbed many times wondering why couldn’t my baby just have one hand. This mother said and I quote  “I would never buy my 9 month old expensive prosthesis….he will teach you a thing or two.” She’s right about one thing, he will teach us a thing or two, in fact he already does everyday!

As I have said before it is important to us as Jameson’s parents to try to give him ALL possible tools to have a better chance at a normal life. Because he is missing BOTH hands, the level of difficulties he will face are considerable. Our thoughts are that if we provide every option for him now, he will be much more adapted by the time he goes to school. Babies learn so easily at this age and are so adaptable, they are like little sponges. Why train your child to do things with his feet, when tools are available to provide him with a more ‘normal’ life? Using his feet will be an option, but why not give him every option. I know there will be days that he will not want his prosthetics on, and that is ok. With today’s technology, how can we not give him all the opportunities available? It is unfortunate that the cost is so high. Unfortunate that money becomes a factor and health care is not the greatest. But we have to try everything in our power to make it happen. He is our most precious gift and we want to be able to help him thrive. There is NO DOUBT in my mind that Jameson will be great at many, many things with or without his prosthesis.

cute baby