Thursday, November 11, 2010

Simple Fixes: The Update!!!

I just got off the phone with the "other" company and low and behold we have approval! The wheelchair base has been ordered and the seat can be fitted when the base comes in!!!! Soon Makenzie will have new wheels that support her the way she needs, it will give her more access to her communication device, and eventually the ability to get a power chair! I am over the moon! YIPPY!!!

Thanks to my monkey friends for throwing me back the rest of my caps! Time for this Peddler to take a deep cleansing breath!

So the monkeys threw half of my hats down yesterday! If you have no earthly clue what that means read this.

I got a letter of approval yesterday for the wheel chair base. We are getting the seat from a different company therefor it is a seperate order so we continue to wait. Makenzie's seating specialist seems to be optimistic that it will be approved so I am going to be optimistic with him!

Last night I fell asleep with Makenzie at 8:30pm. I woke up 2 hours later, made her water, dosed her meds, and crawled back into bed. I got about 9 hours of sleep which is a record around here! Today I feel so much better. I am not sure how to make that a regular habit as there is just not enough hours in the day but I am going to try.... harder!

Makenzie is doing so very well! Since we have been using her new Sure Step braces, Makenzie's body has been so much looser. Other then a bit of reflux we have not had any vomiting and she is much more comfortable on her belly. I am so excited to see her less flexed and so happy!

Life is funny like that.

How does one small pair of plastic "shoes" make that much difference.

How about two pieces of fabric sewn together with plastic pellets inside to make a "weighted blanket"? Simple right?.... but oh so helpful, offering much needed SLEEP!

Then there is the long awaited admission that it is not possible for me to do everything and asking for help. This leading to the hiring of a really amazing woman who has brought back my sanity.?

Did these things cure Makenzie?.... no..... but hey sure do help!

As the mother of a child with special needs I find it a bit hard to know that there may always be the need to lean on things like weighted blankets, braces, wheelchairs, and hired help may never end. There will always be home heath care company's, therapists, support groups, IEP's and waiver programs with waiting lists that make you want to pull out your hair.

There will always be those who don't understand the struggles in getting Makenzie what she needs and feel you have an attitude of entitlement around your child's services. Then there will be those who think because they have helped you, some how, at some point, they have a say in your life and how you live it.

My life will never have the same sense of privacy again as the weekly appointments and yearly reviews continue to be held in my living room. Some on these said meetings require answering pointed questions about all aspects of your life.

What set this off you may ask?

Today we had a yearly review with an organization Makenzie receives services from through our county. The two ladies that came were very kind and knowledgeable but after answering what seemed like a hundred questions about things like, are your other children happy and doing well?, have your family dynamics changed?, how is your sex life?, do you have extended family in town and do they help you? I was thoroughly done! Then they told me that in order to re determine eligibility for their services Makenzie needed to participate in an IQ test.

This threw me over the edge! Apparently if Makenzie's IQ is over 70 she does not qualify for services regardless of any physical limitations. Hmmmmm, because if she is a rocket scientist that will somehow make it easier to physically care for her and she will magically need less? What ever...... I will jump through their hoops and this may be the first time I pray for Makenzie not to be as smart as I think she is!

After saying all of the above I also want to say that I love my life, privacy or not. I love the people I have met along this journey, even the ones who ask me questions that I think are a little too invasive. I love seeing the passion, the unfailing love , and the belief in healing the therapists have for Makenzie.  I love advocating for Princess Makenzie even if it requires throwing in the towel sometimes. I love seeing how hard the people at the home health care companies work to continue to provide for Makenzie in order to keep her safe and healthy.

It is my reality and even though it has taken some getting used to, I love it..... even if I can't do it all myself!

On a side note, please don't forget to enter to win a $100.00 gift certificate at here. The comments will close for this giveaway on November 15th 2010~ Don't miss out on your chance to win!

Believe... Prayer Works!


Deb (aka Fannie Applecrack) said...

your blog is an inspiration. I'm following you and I'm from the Mckmama community

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