My Toys Sign Blog

Gregory V. Hahn, M.D, Pediatric Orthopedic Surgeon has done Mikie's four spinal surgeries. We have been very hopeful that the surgeries would elongate his spine and stop the curving long enough that once he became a teenager the spine would be fused. Unfortunately, all the infections have taken their toll and all the tubes and what not had to be removed. Two years of surgeries down the tubes.

 

Now, we have 3 choices: 1) Start over again 2) try a newer surgery that is done in Gainesville and still has to be done every 6 months or 3) fuse it now.

 

Please join us with your prayers that the method to best help Mikie live his best life be chosen? We are going to get a second opinion at the request of Dr. Hahn. Thank goodness. You may ask why we can’t just let him stay the way he is, just like I keep asking even though I know the answer. If left untreated, scoliosis can cause problems with heart and lung function.

 

I would love to hear from anyone else who has had positive outcomes. Meanwhile, Mikie is a happy little boy. Well, as soon as I learn how I will attach our Pier Aquarium and icecream outing video. For now, be well.

AT&T finally offered a free PDA (refurb) when their customers sign for another 2 years.  I require a PDA because I need all the bells & whistles every time I’m suppose to be somewhere. I've got my life, my husbands, my grandson Bryans, my daughter & her kids and my moms stuff.

 

I remember the days of carrying around Stephen Covey's organizer planner. However, I find connecting my cell phone to Outlook and setting reminders and alarms to every appointment an easier and HUGE support structure. I input everything: business, job stuff, dr. appointments, reminders to stop by moms house, grandkids school stuff; when report cards come out, everything.

 

Well, that is when you understand how to use the darn thang   I am usually pretty good at figuring out tech stuff. Of course, I will overcome it eventually. It is pretty cool. Not even close to the IPhone or Blackberry, but that's not free.

 

Rick Guidotti’s photography is awesome. I received my grandkid's pictures I finally ordered from the Noonan Syndrome Conference last year. I have never seen such loving pictures, especially of children with special needs.

 

The albinism videos are educational and heart wrenching. What do most people know about albinism around the world? What is albinism for that matter?   Well, Rick and the Positive Exposure folks have taken on the task of sharing the beauty of human differences. Please visit their website, and share with everyone you know.

 

 

It has been recommended for Blog authors to have a niche. Well, I seem to spend most of my free time with or doing things in regards to my grandkids.

 

My husband and I have six adult kids with 9 grandkids between us. We are raising our oldest grandson, Bryan (15 years old) and he's a great kid. He's in honor classes, stays out of trouble, and is growing like a weed. I would say he probably has about a foot to go before he'll reach his grandpa's 6'2" frame. He loves anime, World of War Craft, and lots of T.V. programs I don't approve of.

 

My daughter, Selina has three kids. Mikie, Andrea, and Elijah. Mikie just turned 9 years old the other day. He is my first biological grandchild. He was born with Noonan's Syndrome which includes a bunch of issues, i.e., heart issues, profoundly deaf (only 1% are born with this), weak muscle tone, they lack the desire to eat, and a few other challenges. It was rather miraculous that he was even born. Then he wouldn't eat food for the first 5 years of life; he had to be fed through a feeding tube which was a nightmare. However, the alternative of not having a feeding tube was not an option.

 

He's had several operations: testicals, stomach, eyes, knee, and his spine. I believe it was about a year ago Orthopedic doctors decided he had to have corrective surgery for the 102% curvature that was quickly robbing him from walking or being able to digest food properly. They informed us that he would have initially have surgery to implant some rods and screws along his spine to lengthen and correct the curve. Then every 6 months until he completed puberty,probably about 20 he would need to have surgeries to lengthen the spine while he grew. Oh, yeah that's another big feature of Noonan's. People with Noonans generally are very little size-wize, and small in height.

 

Selina and I have learned to celebrate the inch or two he grew after each of the 3 surgeries he had. Mikie and his younger sister, Andrea ( 5 years old) looked forward to standing next to each other to see how much taller he had become compared to her. Unfortunately, this is not a conquered medical dis-ease, yet. This last surgery ended up having to take out all the hardware due to infection throughout his spine. It is a HUGE disappointment. Mikie immediately went back to 80% curvature and is in constant discomfort. But he's such a trooper. He's got a lot of spirit.

 

It's been about a month and he finally went back to school at Blossom Montessori School for the Deaf. I had the pleasure of driving him and watching his eager face as he drove into the parking lot. He couldn't wait for me to get the wheel chair out of the car. As soon as I helped him out of the car seat he went to the school door banged on it and rung the door bell. It was so cute. As soon as he saw his teachers he told me I could leave, now!

Everything I need is right here on this computer and mostly right here in Windows’ Live. I've spent much of the weekend Social Networking and cleaning up my website. However, it is amazing how easy it is to get lost once one gets on the Internet. I start out in one place intending to do one thing and the next thing I know I've traveled all over the Web. I've emailed literally at least 75 people with a few clicks and then low and behold they responded by choosing to be my friend. I even connected with family members I never speak to but at unfortunately...funerals. Actually one was at her wedding. Anyway, now we can chat, and get hugs, smooches, and so much more.

I am going to have to get organized in some way since I have so many websites, now. Thank goodness for my program that collects all the passwords and Favorites for remembering all the website addresses. My goals are to bring people with like interest to my blogs and or websites so eventually once my toy company is up and running I’ll be a marketing pro (well at least I’ll understand some of it). I am also learning how to create affiliates to make some $$$, as well as have advertising in the areas I am most passionate about.

I learn something new every day. What a wonderful life.