Reclaiming Our Space

Since Ronnie came home from the hospital, we have had CNAs (Certified Nursing Assistants) helping with his care. When he first came home, that care was all consuming – bathing, toileting, dressing, wound care, etc – and it was so nice to have an extra pair of hands to help me with that. I am very thankful that Ronnie’s social worker and her agency realized that I needed the help and were very quick to provide it. But now I’m glad those services are drawing to a close.

Ronnie can take care of almost all his needs now. His surgery wounds are healed. He doesn’t need help with lifting or transferring. He can take a shower all by himself. He dresses himself. In short, he is back to pre-surgery form. So, the CNAs are no longer needed, and for that I am glad.

I’m sure like for many people in the world of personal assistance, the pay isn’t good for the CNA. That means that usually the ‘cream of the crop’ folks are not drawn to that career choice. We had two CNAs that seemed interested in doing a good job, but we had several more who were not good at all. Even the ones that were passably good were often late, needed to leave early, or had some other drama in their lives that ended up having an impact on Ronnie and our family.

And I was just really uncomfortable with a string of strangers in my house.

I don’t know how the families do it that need full-time nursing care for their children. Even around the clock care. How do they adjust to having people around while they sleep and otherwise go about their daily routine? And that daily routine is exactly what was disrupted for me.

I need my routine. My children need their routine. And no matter how good the CNA or nurse might be, routines have to change to accommodate them.

We only have one more day – today – with a CNA, and I am so looking forward to having my life back.

Does any of this make sense?

A Baseball Wish

I think I may have mentioned before that Ronnie has been approved for a wish by the Make A Wish Foundation. We talked and met with Make a Wish prior to his surgery, but everything was put on hold until after the surgery and until the doctor said it would be ok to grant the wish. Well, that has happened!

Now we just need to work out the details and make plans. Ronnie's wish is to meet Adam Dunn, the first baseman for the Washington Nationals baseball team. The Nationals is his favorite team, and he gets so excited every time he sees Adam Dunn on TV. When we took our weekend trip to Baltimore earlier this summer and saw the Baltimore Orioles play the Nationals, we came home with dozens of pictures - almost all of them of Adam Dunn!

I really hope that the Nationals will make Ronnie feel welcome, and that Mr. Dunn especially will understand what a positive experience this will be for Ronnie. I'm pretty confident this will all happen, but even more so after viewing this video that Lucy from Life In Forsyth:

Local Youth Hit The Field With Washington Nationals.

Two Down, One To Go

When Ronnie had surgery a month ago, he came home with three different catheters coming from his body. Two were designed to keep his bladder from filling because he had just had a bladder augmentation procedure. The other was from a Malone procedure, a re-routing of a part of his bowel to make life simpler for him.

The first catheter to go was one from his bladder. But the second one had to stay in another 2 weeks. I'll spare you the details of why he and I both HATED that last bladder catheter because I don't want to cause you to lose your breakfast, lunch or dinner.

Today, though, we celebrated! The second catheter from his bladder was removed!! After an imaging study to make sure there were no leaks in his bladder, the doctor yanked the catheter out - Ronnie yelped - and then smiled!

Even though we now have to collect data on the volumes removed from his bladder, it is WONDERFUL to not have that second catheter. He can now actually start wearing his own pants and not have to continue to borrow the large size from his brother.

In another month, the very small catheter still in place because of the Malone procedure should be removed and replaced with a Chait Trapdoor - something very similar to a G-tube Mickey button.

My goal was to have Ronnie all recovered in time for school, and I think we just may make that!!

Way to go Brave Boy!!

Which Color This Time?

We’ve got just a week and a half until school starts for everyone – well, everyone but Chip. He goes back to college as a sophomore tomorrow!

Most of the back-to-school shopping is complete – new pants for Ronnie, new shoes for Jessica, Chip and Corey, lots of wipes, tissues, Clorox wipes, hand sanitizer, Ziploc bags, etc. etc. that are on all the school lists. But wait! Ashley hasn’t gotten her annual pair of back-to-school Converse high-tops! How could I forget that??

I probably forgot because she already has 10 pair of Converse!! But that doesn’t really matter, does it, my sweet girl? I understand completely, said the woman who has 4 pairs of black flats.

Mark your calendar, dear Ashley – it’s shoe shopping time this weekend!

Special Exposure Wednesday

Ronnie had a doctor's appointment last week, and as is often the case, the office forgot to engage an interpreter for him. We had to resort to using the DeafTalk machine. Similar to a video phone, an interpreter is contacted from a remote location. The interpreter can hear everyone in the room and can see the person at whom the camera is pointed - the Deaf person. The Deaf person can see the interpreter on the computer screen. Sounds pretty good, doesn't it.

Well, for many reasons, Ronnie does not like DeafTalk at all. But, yet another interesting turn of events happened at the doctor's office. Ronnie was on a standard size exam table. The DeafTalk machine was positioned in front of him. Only problem - the interpreter could only see Ronnie's knees.

So, here is the solution arrived at by the hospital staff - set the DeafTalk machine on a small stool and have Chip hold it during the entire appointment. And they wonder why Ronnie prefers an in-person interpreter....



Here's a closer look at how the DeafTalk is precariously balanced on the stool...



Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

A Modicum of Sense

Well, at least the Academy of Arts and Sciences haven't completely lost their minds. I was appalled when I first heard that the TV show, Family Guy, got an Emmy nod for their song, 'Down Syndrome Girl.'

Haven't heard it? Well, here is a sampling of the lyrics:


And though her pretty face may seem a special person's wettest dream. [...]

You must impress that ultra-boomin', all consumin', poorly-groomin', Down Syndrome girl. [...]

You want to take that little whore and spin her on the dancing floor. [...]

My boy between the two of us we'll get her on the shorty bus and then you're gonna take it on a whirl.

Now go impress that super-thrilling, wish-fulfilling, YooHoo-spilling, ultra-swinging, boner-bringing, gayly-singing, dingalinging, stupefying, fortifying, as of Monday shoe lace-tying, stimulating, titillating, kitty-cat impersonating, mega-rocking, pillow talking, just a little crooked walking, poorly-pouting, poopie-sprouting, for some reason always shouting, fascinating, captivating, happiness and joy-creating, Down Syndrome girl.

According to Newsbusters.com, "The Feb. 14 Family Guy episode, which the song appeared in, sparked outrage after its premiere - most notably from former Alaska Gov. Sarah Palin who has a son with Down syndrome.

At one point in the episode, the character with Down syndrome said that her mom was "the former governor of Alaska," a clear reference to Palin and her son, Trig.

Palin quickly criticized the show for the distasteful jab at her son. "[W]hy make it tougher on the special needs community? When is enough enough? When are we going to be willing to say some things just aren't really funny?" she said on Feb. 16."

Mrs. Palin and I almost never agree on anything, but on this item we most certainly do. The song was not funny - it was offensive. And even though, as New York magazine noted, the Outstanding Original Music and Lyrics award, the category in which this song was nominated, has been "gaining a reputation as Emmy's quiet nod to First Amendment rights", this time things went too far.

Thank goodness the song did not win the Emmy.

Really, Jennifer

Dear Ms. Aniston,

I really liked the character you played on Friends. And, although I haven't seen many of your movies, you know, the ones where you play pretty much the same Rachel character, I did feel bad for you when things didn't work out with Brad and John and Vince.

Your newest movie looks interesting, especially the concept of women having babies even without being married or in a relationship. In fact, I wouldn't be at all surprised to hear that you have decided to find a sperm donor and become a parent yourself.

However, if you do become a parent, I really, really hope for the sake of your child, that he/she is born without disabilities because I really don't think after your comment on the Regis and Kelly Show that you would be a good parent to such a child.

Just saying,

Ashley's Mom