Down The Tube

At Ashley's annual physical yesterday, her doctor suggested that I start tube feeding some blended up fruits and vegetables.  Although Ashley used to be exclusively tube fed, after a couple of years of feeding therapy at our local children's hospital, she is eating all her meals by mouth.  Unfortunately, her diet by mouth is not the healthiest.

The only fruit she will eat (sometimes) is applesauce, and the only vegetable is raw spinach.  Other than that, her diet includes classic unhealthy kids fare - chicken nuggets, mac and cheese, mashed potatoes, cheetoes, etc.  So the doctor's recommendation makes sense.  Now I just have to figure out how to make it happen.

I need some advice from other tube feeding moms and dads.  Does it matter what fruits and vegetables I use?  Should they be raw or cooked?  I have a Vitamix blender and I don't think it will be problem getting everything to the proper consistency for Ashley's tube, but what do I do if it does get clogged?  And, if you do feed real foods rather than formula are there any issues I should be aware of, something that might happen that I wouldn't anticipate?

Plus I need some of your best 'recipes' for blending fruits and veggies!

Obviously I am needing a lot of advice for this, eh????

A Found Treasure?

We're planning a vacation soon, and one of the things my kids are really looking forward to doing is playing miniature golf. Finding a wheelchair accessible mini-golf is often a challenge though. But my son, Chip, is very determined, and went off in search of all the mini-golfs near where we would be vacationing to see if any of them stated on their website that they were accessible.

He found one that was listed as accessible on the website, but just to make sure, he emailed the contact person. Here is what he received in reply:

Mr. Nickerson,

My name is Jim Watters, General Manager of Professor Hackers Lost Treasure Golf. I am pleased to inform you that we are in fact totally ADA accessible and you should not incur any issues with a wheelchair. In fact we even have specially made putters for use also. We look forward to your visit, please ask for me and I will personally see that all goes well for you and your family members while visiting our park.

Sincerely ,
Jim Watters

Something tells me I am really going to like this place!!! Professor Hacker's Lost Treasure Golf

Special Exposure Wednesday

Who can be the first to tell me what these pictures are????  (Answer below, but don't cheat and go there first!)

.
.
.
.
.
.
.
.
.
.
.
.
.
Answer - they are moth wings. I don't know who and I don't know why, but something or someone pulled all 4 wings off a giant moth and left them on my front porch.

All Grown Up

I thought I had a pretty good idea about how things were going to change, about what things needed to be done when my children with disabilities turned 18.  I think I was wrong...

I knew that I had to get a power of attorney drawn up for both Ronnie and Ashley.  I remembered that from when Jessica turned 18.  What I don't remember is needing it as much as I have.  Hospitals, doctor's offices, even the day support program I am exploring for Ashley have all asked for it.  I'm really glad I started the process early or we might have been in a real bind.  (I chose not to go for guardianship because I believe my children are capable of making decisions, but sometimes they need help with those decisions.)

I started the process to get Social Security for Ashley, but haven't started it for Ronnie yet.  I went online and filled out the form titled 'Social Security Disability Application."  I got all the signatures done (needed two witnesses), and filled out information for about 15 different doctors and medical facilities.  Then two weeks after doing the form online, a real SSA person calls me to let me know that I filled out the wrong form.  I should have filled out the form for SSI not SSDI.  SSDI is for people for have previously worked and then become disabled, not someone who has been disabled since birth.  I was fortunate that the real person who called was very helpful and very well informed.  I think we might be on the right track now, and after I get signatures (witnessed) yet again, hopefully we will get a decision soon.

Then there are the things I haven't done yet - contacted the local Resources for Independent Living office to get Ronnie some help in passing his driver's test; pushed our state's Disability Resource agency to ensure both kids get the employment resources and help they need; and set up bank accounts for both Ronnie and Ashley so in the event they are approved for SSI, they will have a place for the money to be deposited.

I'm sure I'm forgetting stuff too.  If any of you have been through this adult services stuff, please share and let me know what else I need to do!

Thankful

Happy Memorial Day and a big thank you to all the people who have dedicated their lives and honor for the United States and all of us who enjoy the freedoms guaranteed by the Constitution and the ideals of America. You will never be forgotten.

And a special thank you to Dad-Dad, my father, and Grampy, my former father-in-law and Chip's grandfather, both of whom served in the armed forces. Unfortunately, I do not have a picture of my father, but here is one of Grampy holding Chip when he was just a wee little thing...

It Will Happen

I have lived with a dream for a very long time now, and it is time to make that dream a reality. It won't be easy. It will take years, more than likely. But I and a small group of like minded friends vow to make the dream come true. We want to improve the lives of adults with disabilities, and I believe we can. I'll post more information as we progress in our journey, but for now, please keep us in your thoughts and prayers.



The future belongs to those who believe in the beauty of their dreams.
Eleanor Roosevelt


Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world.
Harriet Tubman


A dream doesn't become reality through magic; it takes sweat, determination and hard work.
Colin Powell


To accomplish great things, we must not only act, but also dream; not only plan, but also believe.
Anatole France


Change will not come if we wait for some other person or some other time. We are the ones we've been waiting for. We are the change that we seek.
Barack Obama


Never believe that a few caring people can't change the world. For, indeed, that's all who ever have.
Margaret Mead

Time to Really Live

Zach died this past Monday.  The really important thing though is that he LIVED until last Monday.  This is a long video, but chances are it will change your life....