Study Day

 Back at the first of the year, as my Dermatologist removed the cancerous tumor on my foot, we discussed my children. She was very interested in the oldest child's Goldenhar Syndrome. She had heard of it, but never seen a person who had been diagnosed to her recollection...so she asked us to participate in a large event held there each November where Dermatology Doctors come from far and wide to learn more...

My mom and I loaded the boy up at 5 am this morning and headed south, to UAB's Kirkland Clinic. They provided us with breakfast, coffee, cookies, other snacks, and more coffee. The boy earned a nice monetary prize from the University for his time and that is probably the only reason he wanted to go (typical). They placed us in a room (other patients were there also) and I kid you not...over a hundred doctors from all over the world came in small groups where I gave my "speech" on cochlear implants, Goldenhar Syndrome, skin tags, scars, dermoids of the eye, etc etc etc...

Gage did grow tired of the whole event after the first hour (we had already seen like 80 people at that point) but he was polite as expected and they all thanked him/us for coming and helping out over and over again.

I had explained to him before we ever went that this would help some child in the future. If they come across another child with these features, conditions, anomalies, they may have some idea what direction to point the parents...and that is all we wanted to do. They also reiterated that him as well so he was happy to help.

Both of the kids did well on their report cards this time, and we continue to mainstream as we always have. They are both participating in the church Christmas play again this year and we are about to leave for practice now. We still hope to upgrade Brooklyn's "ears" by April of next year as we must come up with the funds, since insurance will only cover 80%, we'll need over 3 grand before we upgrade to the N6s. Fingers crossed and praying now, we hope to accomplish this for her. She is on her last few spare parts right now! Until next time....

Goldenhar Boy

So I was lying on the O.R. table (it was actually more like a doctor's office-I had no anesthesia) trying to think of anything to say to drown out that LOUD snipping as the surgeon removed skin and tissue deep within my foot (another skin cancer). I blurted out (in a voice that was a little too loud for the awkward quiet) "So where did my other doctor go?" Realizing instantly my voice was off key and too loud I tried to retract some composure as my blood pressure soared with every SNIP, SNIP, SNIP!!!! "I mean, Dr. C? She's not here anymore right? She always used to ask me questions about my Goldenhar Boy."

She knew exactly what I meant when I said the word Goldenhar and she starting spouting off facts she knew to confirm I was referring to the same syndrome, "Does he have any Renal issues?" Our conversation progressed just as I had hoped and I forgot all about what this lady was amputating...

By the time she finished sewing me up, I had agreed to bring him in, next November, to meet doctors from all over as she was in charge of organizing an annual event for doctors to meet with patients who have disorders, dermatology issues, or rare syndromes which might land them in an office like theirs one day. Basically Gage and I will kinda sit around and chat as these doctors make their way from group to group and answer any questions they may have. I warned her Gage was quite the talker and he's used to helping out the medical field any way he can. We know that, not only could it affect his own future, but others that come in behind him with this same rare syndrome...
a doctor will be able to say, "Oh Goldenhar Syndrome! Yes, I'm familiar with that, I met a 12 year old boy with that when I was in Alabama once!"

We are beginning our Spring Break at school this weekend and it won't be long until we are here for the Summer!! Woop Woop!

Sounds of Snipping

So I had my skin cancer removed yesterday. I wasn't very nervous except for having to endure all the sounds of snipping. I told my kids when I dropped them off for school that I wish for today, I had the ability like they do to turn off my ears so I didn't have to hear all that snipping. Anyone who has had a c-section or anything removed from their body and can hear well, knows what I'm talking about! Not a fun experience and I'll save you the details...
I have about a 2 in incision and I have no idea how deep it goes but IT IS DEEP I assure you!
I explained to the doc before she began my anxiety and even what I had told my kids and of course, as usual that was my window for continued conversation throughout the surgery so I wouldn't have to hear all the snipping. She was great and turns out she knows a lot about Goldenhar Syndrome (she needed to know that for boards) and turns out she visits our Children's Hosp. where we frequent to do pediatric dermatology! She also refers people frequently to our Genetics office so we discussed all kinds of things to keep my mind off snipping! And it worked! She enjoyed it as much as I did because we were talking medical and she was a little taken back I guess that I knew things like Connexin-26, Connexin-30, and other clinical terms. And I wasn't trying to show off either! I was keeping a constant flow of conversation I assure you and it worked like a charm, even when I was being sewn in an area that wasn't quite numb! Whew, glad it's over now and it really wasn't that bad...but I will use SPF 45 from now on!

** day after note**
no one cares if you had "surgery" the day before, you are expected to run at full speed to hand children things that are four inches from their grasp, cook to order, and unload dishwashers and washing machines, but I enjoyed my day off yesterday

Quick Updates

Good Alabama Morning

Brook had a friend over Sunday to make "chocolate milk"

They did super well together and we look forward to having her back with my niece (who goes to preschool w/this little girl) for a girl's spend the night party, big fun!!

Gage had spend the night company Fri. night. All went well. I explained to him why I asked him over here instead of granting his request for Gage to go over there. He understands that during night hours, Gage hears nothing w/out his processors and should a fire break out, I need to be secure in knowing everyone will remember he hears nothing. So for a first time spend the night, I asked he come here instead. All went well. They had fun, hunting, playing video games and making trucks!

As of now, no more signs of 'trouble' for Gage in regards to his mysterious pain, redness of his head/ear. All seems well, must have been coincidences.

Friday I have my skin cancer removed...big fun.

I've been subbing, a lot, both elementary and high school.

Thurs. I'll be at the SHAA convention in Birmingham. More on that soon.

ME for a change

Gage has been working out, as we left for school yesterday he told me that was a 100 lb weight and he could lift it w/one hand....

Brook came to me w/a speaker cover (someone gave Gage a large speaker he could use for his custom built toys)and she held it up in front of her mouth and said,"okay, say mmmm". I just laughed and thought...you know this kid's had plenty of audiology...

Under my clear band aid is basal cell carcinoma (skin cancer) and if you look closely, I have a new spot next to it which will have to be checked out. Surgical removal is scheduled for Mar 12. But, I have to tell ya, the story behind this. I've had many spots I've questioned over the years, all look different, some brown/black, most red, some flesh colored, a knot, so when several popped up on my chest 3 weeks ago, I said to myself...my kids are in school, IF anything should really be wrong w/me, now would be the best time to take care of these things before summer comes and we are home for 2 1/2 mos when I typically don't have time, or baby sitters which would allow me to run back and forth to a bunch of ME appts. As soon as I saw the spots, I told myself looks like basal cell, just like my sister has had and I went to the computer, found a doc I liked, called and made an appt. Just like that. I'm my main obstacle when it comes to taking care of myself, so w/out hesitation I decided, I needed to take care of ME. Glad I did too, I lucked up and all spots were cleared except the one under this band aid, so glad we biopsied several though, eased my mind and the doctor's as well! And I've already started w/advocating (I'm turning into that woman I guess, people will eventually avoid, lol). So I was standing in the check out line, two teen cashiers were talking back and forth, both wanting Spring to hurry and get here so they can start their tans (both were very fair) and I listened to them talk about using accelerators to try and tan, all kinds of other products but burned their skin instead of tanning it. I walked up, between them, pulled the top of my shirt down an inch or two, showed them all my bandages and smiled and said, "and when you get my age, you'll be finding yourself scheduling appts. to have skin cancer dug out of your body." Their eyes widened and they immediately had question after question after question. Let's just say, they may be using SPF 30 this year. I assured them they could still get some color but w/out so much burn and thus less damage. I've used SPF 30 for the past couple of years, but before that, less protection or even none at all and all those years of burning in the sun is exactly why I have skin cancer now........learning to have controlled advocacy here, careful not to become some know it all pushy lady!  Assertive not aggressive when dealing w/people, assertive and aggressive when dealing w/cancer, any form of cancer. I will continue to have the full body checks as often as needed, I really like my doc and feel very comfortable w/her! Don't put off going to the doctor...especially you busy mamas out there! Sometimes we have so many appts with our children, the last thing we wanna do for ourselves is schedule a doctor's appt...just do it!

And finally, Gage is doing wonderful on his new dosage of Concerta for his ADHD, we slightly upped it and he's back to being focused and doing well. His teacher could tell a big difference yesterday!!