I had many errands to run Wednesday but forgot about a conference call with the American Heart/Stroke Association regarding health care reform. The duration of the call was approximately an hour. A lot was discussed, and I must say I am so impressed by the AHA/ASA. Their efforts to help ALL Americans are promising! Who knows what will actually come of health care system but their concerns and knowledge give me hope about positive changes—I personally need hope! With this hope I am eager and energetic to be a part of something that potentially can help my child, among all children like Bren! I just know that I must persevere for the future of Brendon and others like him!
Through all of the commotion with the AHA/ASA, I neglected to call Bren’s orthopedist to make an appointment which is much needed. My little guy walks and runs on his right toe even with his SMO, leg brace. This is of great concern to me because of the duration—it’s been several weeks and it’s not improving. Also, with the SMO he shouldn’t be on that toe!
So, when I called the Orthopedist yesterday to make an appointment, I had the pleasure of hearing, “Oh no that’s not good!” when I explained Brendon’s current issue of toe-walking. I know it’s not and I told the nice lady that wasn’t what I want to hear—I wasn’t mad and I know she is actually concerned. Dr. Anderson only sees “Special Needs” children on Wednesdays so we aren’t’ able to get in until the 15th; but I will call on Tuesday to see if there are any cancellations for next Weds. I am a little nervous but have been extremely mentally prepared that this could occur in Bren’s future. You see, with CP things like growth spurts can devastate a child’s body! He may be ambulating without problems one day and the next day he has major physical issues that require more invasive treatments. I am praying that this is not the case but am not shocked that he currently is having “issues.” What often happens is by the time we get to the doc the problem works its self out! I also have noticed more circumducting of his right hip as he ascends steps. He probably has done this all along but currently it is more prominent (Suzie if you are reading this please don’t let me forget to discuss this with you on Tuesday at therapy).
Bren had Speech Therapy with Ms. Bonnie Wednesday; the woman has the patience of a saint! She never gets frazzled even when an overly tired 3-year old has a major case of the sillies!
Bonnie asked how things have been going for Bren after we received the family training. I explained we were all slowing down with our speech, not interrupting, not finishing each others’ sentences…communication amongst all of us is much better—it is so hard to change something you have done your entire life! But, Brendon has started in with, yet another, secondary characteristic of his speech difficulties—he now hums the words before he begins to speak. Many people have responded by humming back therefore, causing me to believe they think he is just humming but he’s not. It is as if his little brain adopts anything it can to help get his words out. I keep praying that one day Brendon will wake up and he will be able to speak without difficulty!
I think I may have mentioned this before but, President Obama uses, during his speeches and general public speaking, the same cues Brendon is learning how to implement. I just wonder if our current President ever stuttered or if these are techniques he was trained to use strictly for public speaking—we all get tongue tied under pressure. In fact, it is my goal to do educational public speaking engagements and I think the techniques will come in handy!
Speaking of the President’s public speaking, while on the phone with Stephen Wednesday, he started speaking EZ with me as I was using EZ speech in the presence of Bren. He was at work during this conversation and one of his Detectives asked him why he was talking like the president. So if you are wondering what EZ speech sounds like just listen to our President speak!
Bren and Stephen are off on a Daddy/Brendon adventure this afternoon– fishing! Mommy gets to straighten up the house and vacuum –wooo hooo! I just received a phone call that the little man just caught two “huge” fish! I am happy they are spending the afternoon together!
Hopefully, on Monday I will get to announce the date of the 3rd Annual Brendon’s Smile…Raising Awareness for Childhood Stroke Walk; along with some exciting news…STAY TUNED!
A few more things before I wrap this up…
Next Friday I will be interviewed, via telephone, by Dot Blum. Her radio web is http://www.radiosandysprings.com/showpages/brightspot.php. If you click on the 05/09/09 show you can hear her interview with our wonderful supporter Brandon Miltsch, who told her about Brendon and our foundation. She contacted me and requested I do the hour long radio/web interview! I am so excited! I will post a link next week for those of you who would like to listen. I have a lot of homework in front of me to prepare for the interview! We need LOTS of prayers that I am capable of communicating everything I need to communicate for our Childhood Stroke Survivors, for Brendon’s words to flow with fluency and for his right side to be loose and strong, and for ALL of our heroes!
Oh and don't forget to check our our July Stroke Hero of the Month!
God’s Blessings to all of you and Happy 4th of July!
