Archive for April, 2012

April 30, 2012

AHHH!!!!!

I’m so excited, I’ve got to share!

I’ve been feeling a bit frustrated and frankly, just not satisfied, with the information we were given when we had Jovia evaluated by the orthopedic specialists when we first came home. They told us to never expect her to sit up and that prosthetic’s would likely not be an option for her.

This morning I sat down determined to do some more research. I’ve been looking for “the best” specialist for kids like Jovia. Someone who has experience with other toddlers without limbs. This is a tiny market, there just aren’t many of these kids. But wouldn’t you know it, the first article I pulled up had a picture of a little boy in Oklahoma, without arms and legs, walking! It listed the man who created his prosthetic’s as Kevin Carroll, the man made famous by Winter the dolphin’s prosthetic tail.

I decided to take a risk and send a email to this prosthetist to see if there is any way he’d be able to evaluate Jovia if I could somehow get her to Oklahoma.

I’m not joking when I say that not 10 minutes later an Oklahoma phone number popped up on my phone.

No way. I ran to the bathroom to escape the kids and answered the phone.

It was Mr. Carroll’s office. Not only is he willing to see Jovia, he is going to be in a city ONE HOUR away from us on May 17th and wants us to bring Jovia over so he can meet her!!!!!

Our baby girl is going to be evaluated by one of the best prosthetists in the country in just two and a half weeks!

I’m so excited to hear what he has to say. Even if his answer is the same as our first evaluation, just knowing she’s been seen by the best specialists will make me feel so much better.

I am blown away and thanking God for such a miracle and answer to prayer. YAY!!!!

April 29, 2012

I scream, you scream…

we all scream for ice cream!

And that is exactly what happened at the park today.

Out of nowhere I heard a high pitched tinkling of music coming up the road. As the sounds of the truck grew closer, screams of “ice cream!” started rippling through the park and children abandoned their playing to race towards the parking lot. Parents started scrambling through their purses and pockets with one hand while attempting to hold back wild children with the other. Yes, that includes me.

I only found $2 so I told the kids we’d all have to share an ice cream cone. That didn’t seem to phase them…they were so intent on getting something, anything, from that ice cream truck.

As we walked up to the truck I saw a sign propped up in front that said “Free Ice Cream, Courtesy of —–(local realtor). Woo hoo! Ice cream for all. As the news spread the cheers grew louder and the line grew longer.

The three who were with me were overjoyed to get their ice cream out of the truck window. We don’t live in a part of town that gets an ice cream truck so this was quite a treat. It was a fun surprise to our afternoon.

April 29, 2012

Benja’s EEG/MRI/CT

Just an update on Benja’s continuing medical evaluations. 

He recently had an EEG.  It was at noon and they wanted him to nap during the test.   Benja and I looked at the technician like she had four heads when she asked if he was ready to sleep.  In a room with three people, a TV, multiple computers,  in the middle of the day, strapped to a board with a gazillion wires coming out of his head.   Right.    I told them there was no way he would go to sleep.  So they did the test while he was awake.   She said they got what she needed so hopefully it was OK.    He was strapped down for probably a total of 2 hours.   About a hour to get all the wires stuck to his head and then another 20-30 minutes for the test and another 20-30 minutes to get them all off.   He wasn’t crazy about it but did OK.   They did a really poor job of getting all the glue off his head and two hair washes that night didn’t get it all off either.  Finally some baby oil and a good comb through got it all off.   Now we’re waiting to hear the results from the neurologist.

We spent that night near the hospital in a hotel because we had to be at the hospital at 7am to get checked in for his MRI/CT done under anesthesia.    I hate when he has to be intubated.   Because of his jaw/airway issues they make a huge deal about it at the hospital with multiple anesthesiologists, lots of questioning and discussing, explaining the increased risks, the difficulty of intubating him, etc.    It all makes me nervous.    I sat in the surgery waiting room for several hours while he had the tests done and then a nurse came out to get me.   She said “Is Benjamin your baby?”  I told her yes and she said “Girl, you have THE CUTEST baby!”   I agreed.  When I went back to see him the nurses were passing him around the nurses station.  :)   They said he did great waking up and besides a sore/scratchy throat and being tired the rest of the day he was great.   Now we’re waiting on the craniofacial surgeon to call us with results of the MRI/CT and let us know if we can schedule his jaw surgery!

April 24, 2012

Some pictures…

Some cuteness from the past week or two:

April 24, 2012

Jovia Dancing

All of our kids greatly enjoy the the Gummy Bear Song but Jovia gets particularly animated when she’s dancing to this song.  :)

April 14, 2012

Better late than never…

I know it’s late – almost a month late – but the babies are now TWO!!!

We had a wonderful birthday party for them here at home with many of their family and friends.   They both thoroughly enjoyed their cake and opening presents.   They are growing and changing so quickly!   

 

April 11, 2012

Benjamin can roll!

Benja can officially roll over!  Until recently he’s been like a little turtle, once he was on his back, he was stuck on his back.  His PT told me that Ben just had to learn to roll.  That was our big assignment to work on.   We started practicing with him every day – it took about 2 weeks but one day he just figured it out!

I’m happy he can do it but he’s become a handful ever since he learned.  Diaper and clothing changes are such a struggle cause he goes crazy trying to flip himself over!   He also has decided he no longer needs to sleep at nap time now that he has figure out how to get himself up to play after we put him in bed.   He’s such a silly boy.  :)

April 10, 2012

My goodness, I am behind on my blogging!  I have so much I want to share but the days are getting away from me!  

For now, some cuteness from Easter.  More when I can.