Friday, March 13, 2009

Friends, Appt, and a little Photography news


Some of my favorite people in the world came over yesterday at lunch and spent the day and night with us. Dawn is one of my very bestest friends, and we try to get together once or twice a year, so we were very excited about this short visit. Oh, and it was so much fun! We laughed until our stomach muscles hurt and talked until our cheeks hurt...and our husband's ears hurt. There's nothing like a great visit with friends.We met with the mitochondrial researcher here yesterday morning and had a wonderful visit. The short story is that Nathan will not be in the current clinical trial here, which is actually good because our calendar has filled up quite a lot in the past couple of weeks, and I wasn't sure how we were going to fit in the overnight stays in-patient for this study. But, we really fulfilled our main purpose in trying to get Nathan into this trial...to get acquainted with the only people around here that know mito.

It was very good to talk to the researcher. There are some exciting things that could be happening down here in the next few years for mitochondrial patients, and it was great to talk to him about his plans and thoughts. Nathan was his usual charming self and walked right up to the doc and sat in his lap for a while.

The doctor was very interested in Nate's daily fevers...this has been an interesting symptom for most of the docs, but no one has been able to explain a reason for it. This doctor was very intrigued and said that the first paper published on mito 50 years ago featured a patient who had these daily high temperatures. In essence, it seems that it could be the body's inability to change carbs over to ATP (energy) effectively, so it creates heat in return. That makes perfect sense to me because his temperature always goes back to normal (98 degrees) when he sleeps or naps, and it starts creeping up the moment he starts moving around and playing.
I love the mito doc's nurse, and she and I have had some great conversations lately. She asked me yesterday if I would consider helping start a mito support group here, and I said "absolutely". We really need one here! She is going through umdf.org to get the info on starting up a group, so we should have something going soon.

I believe that God opened up a door for us to meet with this researcher. He is a very busy man who has many responsibilities along with his research, and he took time out of his day to just meet and talk with us...and for that, we are very thankful. I had a strong feeling before yesterday that Nathan wasn't going to be in the study, so that wasn't a surprise at all. I told Jay yesterday that I think it will be a while before we see what God had in store with this meeting, but I strongly believe that we will know in the future why we had the opportunity to sit and talk with this doctor.

All in all, it was a good day...and a great visit with our friends!Switching gears just a tenth of a degree, we have received all of the new specialist appts this week, and I wanted to share what our next couple of months look like:

March 16: Gastric Emptying Scan
March 24: Cardiology
March 31: Immunology
April 1: Ophthalmology
April 3: Early Steps Eval. (Occupational Therapy)
April 8: Hepatology
April 15: Kindergarten Round-up for Abby
April 16-18: Daytona for one of Jay's meetings (woohoo!!!!)
April 21: PT
April 28: Audiology, Hearing Eval.
May 14: Neurology

I share this with you as a precursor to say something that I knew I was going to have to eventually admit...I am taking a break from photo shoots for an indefinite time. I have gradually toned down how many families I photograph each month, and I am now realizing that even the small amount I was doing was overwhelming at times. As much as I absolutely love photography and photographing others (I really really do love and enjoy this), I need to focus all of my time and energy towards my family and the daily activities we face. The many hours of editing photo shoots in the evenings will be replaced with regrouping from the day's events and going to bed at a reasonable time.

If I have already told you that I would photograph your family and we have not been able to set a date, please know that I am still planning on this. Don't hesitate asking me about a date to do this.

As heartbroken as I am to stop photographing others at this time, I am also extremely relieved to be able to focus that time and attention towards what is ahead for our family. I trust you all understand. And I do hope to be photographing once again in the future (in fact, I am going to keep my website up and running), but this time will have to be once our lives slow down considerably. (Humor me and don't let me know if that never happens.) Thanks, guys!!

2 comments:

Anne on March 14, 2009 at 10:57 AM said...

I am so glad that you had such a great visit with friends yesterday! Aren't those two boys (and their parents) absolutely precious? We are thinking of you all and praying for continued direction and treatment for Nathan. Thank you for sharing your family with so many. We hope you can visit us at MGPBC soon! Love to all.

Christine on March 16, 2009 at 9:10 PM said...

That is one crazy busy schedule. I know that it was a tough call to make on your photography but when things are settled down a bit, if you want to, you will have no problem getting back into the swing I am 100% certain of that!!! I miss you girlie! Hope all is well!!

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