Thursday, November 12, 2009

Hello Friends!

Just a quick note to say we're doing okay. Things have been so chaotic for us this fall!

* I mentioned before that Stephen's doctor recommended we avoid crowds until the swine flu outbreak is under control, or until we have Stephen vaccinated. Hmmm ... I have a lot of research and praying to do before we vaccinate. We all three got the seasonal flu vaccination as always and did fine. With Stephen's heart and lung history, we need to avoid any possibility of pneumonia.
As a result of this, he is receiving home bound services through the school. His teacher is coming to our house twice a week to work with him. He and his teacher have never met before this year, so this has been a great way for them to bond before he is released to go back to school.

* We are getting all of our ducks in a row for Stephen to have oral surgery. Ugh! I had no idea how many doctors we were going to have to go through to get this done. His cardiologist, neurologist and even the geneticist have all got to send their most recent notes to the anesthesiologist. I am thankful they are taking all of the necessary precautions and taking his history into consideration before the surgery. This will be done in an operating room setting at the same hospital he was born in. We haven't been there in a long time, and have some very emotional memories at that place. I'm a nervous wreck because there are always risks involved with anesthesia. His lung function is good though, and we've been keeping him well, so that's a good thing. He is having all four wisdom teeth extracted and two other teeth that have teeth coming in under them. Dear me, the child has perfect teeth -- never a problem with them, except, he has too many of them ... Poor baby. :(

If he has the surgery before Thanksgiving, looks like he'll probably be eating puréed turkey. I'm hoping we can schedule it for right after Thanksgiving so he'll be healed up well enough by Christmas.

We appreciate everyone keeping him (and us!) in your prayers! I'll keep you posted.


Remo said...

Progress is progress. eh? Many folks don't understand how complicated the normal aspects of life can be for the disabled and their families. Hang in there and plan on lots of pie for the holidays.

Warren Baldwin said...

Prayers offered! God bless.

Bridgett said...

Overall, sounds like things are going well.

Keep us updated about Stephen's surgery, okay?


Warren Baldwin said...

Just thought I'd let you know I'm having a give-away contest for my book on Family Fountain.

Deirdre said...

Hey {{Mia}}

I seriously don't know how you can possibly keep up with all the lil extras. Caring for your precious Stephen is the equivalent of caring for 6 children that need 24/7 assistance. Never mind the emotional factor which is beyond, beyond what one can possibly realize unless they too have walked that path. You're right: faith first, then family. I'm glad that you're giving yourself the permission to let go and enjoy what matters most for the holidays.

You are always in my prayers and especially yesterday; I hope Stephen's dental procedure went well and that he is recovering peacefully and pain free (and you too Girl!).

Lastly, things you should or shouldn't say to a Caregiver:

*Have you tried to change her/his diet? It might help him/her recover.
**"Oh! Why didn't I think of that?!?"

*With a little more attention and stimulation he/she will be right in step with their peers.
**"Ooookay I guess I might be living on the wrong planet because the one I live on has 24 hr. days and I'm burning every last minute of each and every one in the quest to provide my child with every possible stimulation known to mankind."

*Have you tried THIS Specialist?
**"No, does that Specialist live on this Earth?!?

I'm going to post my Parents & Caregivers Bill of Rights for you again...sounds like a good addition to your journal entry AND a good reminder for precious friend!
Love Ya & Happy Holidays!
Jimbob aka Deirdre

Deirdre said...


You have the right:

1.To take care of yourself. Caregiving is not an act of selfishness. It will give you the capability of taking better care of your loved one.

2.To seek help from others even though your loved ones may object. Only you can recognize the limits of your endurance and strength.

3.To maintain facets of your own life that do not include the person you care for, just as you would if he or she were healthy. You know that you do everything that you reasonably can for this person, and you have the right to do some things just for yourself.

4.To get angry, be depressed, and express other difficult feelings occasionally.

5.To reject any attempts by your loved one (either conscious or unconscious) to manipulate you through guilt, and/or depression.

6.To receive consideration, affection, forgiveness, and acceptance for what you do, from your loved ones, for as long as you offer these qualities in return.

7.To take pride in what you are accomplishing and to applaud the courage it has sometimes taken to meet the needs of your loved one.

8.To protect your individuality and your right to make a life for yourself that will sustain you in the time when your loved one no longer need your full-time help.

9.To expect and demand that as new strides are made in finding resources to aid physically- and mentally-impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.

Deirdre said...

Woops...I put my comments in the wrong topic...sorry! Maybe you can move them? :-)