August will have tubes placed in his ears this Thursday at 8:30 AM.   We are hopeful that draining the fluid from his middle ear will improve his hearing–he has a mixed hearing loss in both ears, some is because of this fluid and some is permanent.  Possible other effects would be improved balance for sitting up, as well as language development.  We think he will just feel a whole lot better.  Tubes have to heal for a month before travel on an airplane.  We are taking off for Baltimore on October 26.

Last week we had three really good appointments.  It’s so great to have a good appointment.  First we saw Dr. Aaby the eye doctor.  August has a ptosis on the right side.  Sometimes the brain stops developing vision when the eye is partially blocked by the eyelid, also the pressure of the eyelid can flatten the front of the eyeball.  Good news:  vision is developing in both eyes and the shape of the eyeball is fine.  So eyes are healthy. Check!  Follow up in six months.

Our next appointment was at the feeding clinic with the dietician, physical therapist, speech pathologist and development specialist.  They were all impressed with August’s weight gain, head control, range of motion, and reaching.  He’s up to 14 pounds and ready for his first cereal.  Oatmeal.  Yum.  Also suggest adding “super butter” to the oatmeal to boost the fat and calories.  Stick of butter blended with flax seed oil.  I was so surprised they decided to feed him cereal.  It’s a milestone and here we are in the hospital in a very sterile setting and someone else is feeding my baby his first cereal.  As I am saying this and wishing I had our digital camera with us, Sue the sweet social worker was heading to her desk to grab a Polaroid camera.  So we did get some photos with a nurse with a purple latex glove feeding August.

Next stop:  Dr. Guillery the nephrologist.  Recheck of blood pressure after stopping medication for 3 weeks.  BP is on the high side of normal, but no need to stay medicated.  Alright, one medicine gone.  Four meds remain.

August is looking really good and has made some good progress these last couple of weeks.  He says “ma-ma-ma-ma-ma-ma” when happy and upset.  He’s doing his baby push ups and rolling over from tummy to back.  He is still not a fan of sitting and loves extending and arching back.  He may be a baby the skips sitting and crawling and goes straight to walking.  The PT says it’s common for babes with G-tubes to not want to sit or crawl and many walk first, then go back to crawling later.  That’s cool.  He loves to stand and jump and bear weight on the legs.  His smile comes easily these days.

He knows he is loved.  Please continue to send him your healing thoughts and prayers.  And thanks to all who have donated to my brother Dave’s Run for August Miles.

Well, 5am came early this morning. Got up and ran 8 miles. Training has been tough lately. I blew through 15 miles two Saturdays ago. My training schedule showed 16 miles for this past Saturday. At mile 14, I HIT…THE…WALL. I’ve been working out how much liquids I need to drink while running longer distances and that’s been working well. But at mile 14, I felt really dizzy from hunger. It’s weird to be out there and get hungry. I’m really getting lean from the training. Not having the spare tire anymore, I now have to figure out an eating plan while running. I guess that’s a good problem to have.

I can’t say thank you enough to all the people that have donated to the August Miles Fund already. It is so appreciated and motivating. THANK YOU

Below is a copy of the letter that Dave is sending to friends and family.

———————————

I have never met my nephew, August Miles Levenson, but he and his family are constantly on my mind.

When he was born on Feb. 8^th, he spent the first six weeks of his life in NeoNatal Intensive Care at Legacy Emanuel Hospital in Portland, Oregon with rapid heart rate, enlarged kidneys and bladder, malrotated bowel, and a tethered spinal cord. Two major surgeries later to correct his spinal cord and bowel and intestines, he now has a feeding tube due to swallowing impairments. August also has significant hearing loss in both ears and continues to have reflux and feeding difficulties.

Compounding the stress of his physical challenges, genetic tests reveal that August is missing the tip of chromosome 7 (terminal deletion of long arm chromosome 7, quadrants 3, 4). This syndrome has no name and is extremely rare. His team of specialists has determined some growth and developmental delays, yet his long-term prognosis is unknown.

Read the rest of this entry »

August turned seven months old on Saturday–we put him in the backpack and walked around the Belmont Street Fair.  He lasted about five minutes.  We carried him in our arms the rest of the day.  Amazing, we have four pieces of baby gear we strap to our bodies to carry him in, but he prefers our arms.  So that’s what we do.

Went to new GI doc last week.  I was convinced something was wrong somewhere between August’s mouth and his stomach.  He still has such a hard time eating.  Either not interested or slurps a few teaspoons so quickly, then chokes and refuses to take any more.  Dr. Riley thinks everything is fine with the size of his stomach and the physical connections from mouth to stomach.  He said it is very common for kids with genetic disorders to have GI trouble.  Next stop:  Dr. Aaby tomorrow for eye/vision check.  We also revisit the feeding clinic and Dr. Guillery the nephrologist.  If August’s blood pressure has stayed where it was (the high end of the “normal” range) then he can stay off his blood pressure med, Amlodipine.

We are really looking forward to our trip to Baltimore and the East Coast and seeing Uncle Dave run in the Marine Corps Marathon.  We hope to catch up with many of you while we are there.

Summer has not left us yet.  It is stubbornly holding on and blasting us with deliciously hot days and cool, clear nights.  Record-breaking heat coming up over the next couple of days.  Supposed to be 90 and up.

Wow, my first post.

 A lot of people have asked me how training is going.  Good, I guess.  I’ve never run a marathon before, so it’s tough to judge.  Ran 15 miles last Saturday.  It finally cooled off here in Charleston, SC, so it was a very comfortable run.  I ramp up to 16 miles this upcoming Saturday.  According to my training schedule, I will ramp up to 20 miles three weeks before the race.  That’s as far as it takes you.  But is still six miles shy of a marathon.  I’ll paraphrase what my book says, “If you can make it 20 miles, you oughta be able to suck it up and get six more”.  Inspiring, isn’t it?

 I’ll post again after my Saturday run.  Maybe include a picture.