Monday, November 14, 2011

Trace Update & Golf Pictures

I haven't updated much on Trace, so here's the latest.  Nothing major in the past couple of months, he's been doing good and we're very blessed for that! 

October he had a check up with GI.  I once again was hoping for some weight gain - Trace only gained 100 grams, but at least he didn't lose!  Yes, sadly we have to count every gram.  Trace is already drinking at least 2-3 Pediasure's per day for extra calories and getting his full 1180 calories per day plus some.  However, he's not gaining anything.  He's not even back up to the weight he was before his last hospitalization in August.  As another attempt to gain weight, GI has now added a supplemental formula to the already 240 calorie Pediasure he drinks.  Trace has frequent bad days with tummy troubles and on these days he doesn't want much solid food, usually only in the morning.  You wouldn't either if you experienced what he does on those days.  Because of the fact he doesn't want to eat solids on some days, feeding therapy was also discussed.  We have decided this is something we will not be pursuing.  Feeding therapy is a very intense program which isn't located anywhere near us.  Trace doesn't have problems swallowing, gagging, or with textures, so I don't really see a benefit from this for him.  I do believe in therapy as Trace already sees 2 speech therapists, 2 occupational therapists and 1 physical therapist.  He'll see GI again after the holidays, so we'll see if this new formula works and where we go from there. 

Next, more chalazions on his eye.  He's had more chalazions appear in the last 3 weeks.  These have really caused him some visual impairment as well as discomfort. 
We started off with one popping up July 4th weekend, it is still there.  Two more the last week of October.  His current ophthalmologist is refusing to surgically remove these due to the risks of anesthesia for mito patients, although she removed 3 in March without Trace having any problems.  I'm fully aware of the risks anesthesia, as Trace has been under many times, and am not trying to throw him into surgery as a quick fix.  However, he's been on eye drops for 3 months and now we just started month 4 with a different type drop.  This one makes him scream every time - 3 times a day.  I really feel sorry for my little guy having to live with these annoying things.  So under the advisement of his mito doctor, we saw another opthalmologist last week.  He prescribed an ointment and said give it about 3 more weeks.  If nothing, then we get in to see a very "impossible to get an appointment with" pediatric opthalmologist.  Wait and see, wait and see.

Trace spiked a fever two weeks ago that persisted for a couple of days.  Not sure what it was about, but he exhibited no cause of the fever besides some diarrhea.  But then again, that happens at least 2-3 days a week??!!  Maybe it had to deal with his eye, but it was already bad a week before.  The mystery child as usual.  Last week brought coughing and congestion - but no fever at least!  Then there's the fact that he's been waking for hours through the night again.  He usually just wakes up for a drink 3-4 times and then goes right back to sleep.  It took us a long time (years) to get Trace to that point - actual sleep.  I wonder how I functioned then, but looking back now I don't think I really did.  I feel like we're back at square one with sleep right now.  He's up for hours while I rock him.  I really hope whatever is causing this behavior will just go away.  This makes life hard for Trace, and myself, not to sound selfish.  He will be up at 11:30, 12:30, then from 2:00-4:00 AM, back up at 5:30 wanting "mums mums", then my alarm sounds at 6:15 for work.  I'm really hoping this will get better for him. 

After the ophthalmologist appointment last week, we went over to the Mito Clinic to make our donation from the "Putt" An End To Mito Golf Tournament.  Trace & Hudson presented a very large check to Dr. Koenig & her staff.  We were able to donate $16,000 thanks to some very loving, caring, generous people.  This tournament was without a doubt one of the most amazing experiences I have ever had in my life.  Below are some pictures from the check presentation today and the tournament. 

Sorry if this post rambles and makes little sense, but I've been living in the land of no sleep for the last few days.  Hoping our sleep deprived visit is very short lived!
Hope everyone has a Happy Thanksgiving!!

Hope, Love, Courage &Faith,

1 comment:

  1. I LOVE the pictures! Oh, the craziness with those two!