Tuesday, October 5, 2010

Long Overdue Update

It's been just over a month since I've updated the blog.  It's long overdue.  A lot has happened in the last month.  A lot.

Today the boys are 10 months old actual; 6 1/2 months adjusted.  :)

Colton:  16 lb, 9.9 oz; 26.75 inches
Sean:  14 lb, 0.6 oz; 24.25 inches

Neither boy is on the growth curve.  For some reason, they put them on the growth curve based on their actual ages.  It doesn't make any sense to me, but that's how it's done.  When I plot them out on the growth curve based on their adjusted ages, Colton is between the 10%tile and 25%tile.  Poor Seanie doesn't make it onto the growth curve based on his adjusted age.  We seriously need to get this baby to eat. 

Colton continues to do well despite he shunt.  He continues to hit his milestones based mostly on his actual age.  We are working on his sitting.  He does it pretty well, but he likes to curve to his left.  So, before sitting, we do some stretches.  On his own, he is practicing his army crawl.  Once he starts crawling, NOTHING will be safe.  NOTHING, I tell you.  He has had an MRI (in August) to check his shunt and this week he will finally see the doctor for his follow up.  About 10 days ago, he saw the pulmonologist (lung specialist) and was discharged from his service.  :)   With his discharge from pulmonolgy, the doctor notified Apria that he no longer needs the apnea monitor.  Well, duh!  We stopped using it a few weeks earlier when we found him tangled up in it!  Kind of defeats the purpose of an apnea monitor if it causes the apnea!!!!

Sean is off oxygen at night.  WOOHOO!!!  But, as we have lost the oxygen at night, we have gained an eye patch during the day.  Sean has strabismus.  I took him to the doctor because his right eye crosses in and he seems to have some trouble focusing.  Well, the doctor lectured me on not saying lazy eye because that's the same as saying bum leg - it means nothing.  Um, ok, I never said lazy, I said crossed!  The treatment is patching him for an hour a day to retrain his brain how to control the eye.  It's actually a brain problem, not a muscle problem.  The patching should help as he doesn't always cross it.  It will also tell his brain to use the eye.  Right now, what is probably happening is the brain is turning that eye "off" and ignoring it.  If the brain continues to do so, he will be blind in that eye (but only because the brain shuts it off - not because the eye can't see).   The patching should take care of this.  He might need surgery to correct the eye, but that will be much later down the road. 

We are working on getting Sean to eat better.  He sleeps through the night (well, so does Colton), but we wake him up once or twice a night to feed him.  He is still getting the 24 calorie mix of Similac Neosure (or whatever it's called now - Expert Care?).  Thankfully, the Neosure wasn't recalled.  But, it's getting hard to find.  Someone at Target said they are getting people buying it because the regular Similac was recalled.  Great!!!  So people are buying their term babies preemie formula when they have other options.  I have two options - Neosure and EnfaGrow.  The Neosure is going to make your baby sick and give them too many calories!!!!  Go buy some Good Start!!!  The pedis are recommeding it for babies that have trouble on other formulas and it's cheaper!!  If my guys could have regular formula, I'd have them on Good Start!!!! 

Sean will be seeing physical therapy more often than once a month.  He is progressing, but it is very slow.  He should be working on sitting.  He's barely ready to start working on it.  Also, he won't reach in front of him to grab toys.  His arms are tight; so, we stretch them several times every day.  Hopefully, we can stretch out the tightness.  He actually is trying to pass up sitting and trying to crawl.  Because his arms are so tight, he can't get it down.  He gets his hips up and can move his knees forward.  But, he can't get his arms to do what he wants and keep his head up.  He works so hard, but gets nothing accomplished.  Poor baby.  He looks like an inchworm trying to move.  One day he will get it. :)

Tomorrow the boys will going to Grandpa's house at Clear Lake.  They will get to see their Great Grandma who hasn't seen them since they were in the hospital.  They will also get to meet their cousins, Patsi and Rachael along with their babies, Brian, Vincent, and Carson.   Over the weekend, the boys will get to meet their Nana (their other Great Grandma).  She lives in southern California so we might try to squeeze in a visit to Disneyland.  :)

After all this visiting, we go on cold/flu/RSV lockdown.  And, while you might think "lockdown" is a strong word, it really is what we have to do.  The boys won't be allowed to have hardly any visitors and won't be going out for anything expect doctor/therapy appointments (no shopping, no birthday parties, no dinners out).  All visitors have to have had their flu shot and pertussis vax (whooping cough - California is currently in the midst of a whooping cough outbreak), can't have had any cold or flu symptoms in the last two weeks AND can't have been in close contact with anyone who has had a cold or flu in the last two weeks.   I will have to come home, change my clothes in the garage, throw them in the washing machine, and go immediately to the shower.

The boys will get their flu shots this year.  Since it's their first time, they will get two shots about a month apart.  They will also get monthly Synagis shots.  Synagis helps them fight RSV.  Most all children are exposed to RSV by the time they are two years old.  And, for everyone, it's like a terrible cold.  For a micropreemie, it can be deadly.  So, for micropreemies, they might qualify for the shot.  It's very expensive ($1000 - $1500 a dose!).  Sean's risk for RSV is so high (they assume if he gets it, he will be admitted to the Pediatric ICU and be discharged back on oxygen fulltime) that Colton will be given the shot.  Colton doesn't qualify for the shot.  Hence, the strict lockdown.

1 comment:

  1. God Bless you all. Those beautiful boys hava an angel Grama Sharon watching over them and you and Larry. I look forward to meeting them one day.
    Betty Bowser