Making a List and Checking it Twice

No, I have not been Christmas shopping.  I have not even started that list yet.  However, I have had a running tally of appointments that I was supposed to make and hadn't gotten around to it yet.  So, this morning, I took the bull by the horns and grabbed my phone.

Josiah was first seen by audiology shortly after birth.  He had failed his newborn screening.  He was essentially cleared.  We were supposed to follow up with them at one year.  Well, Josiah was checked by audiology at Children's twice since then.  Both times, results were inconclusive.  So, we decided to schedule this follow up for the local office (where he had had his first screening).  By the end of next week, that follow up will be done!

I had scheduled Josiah for his first dental appointment back in January.  Kids with DS tend to have increased levels of bacteria in their mouths.  They also tend to have more dental issues.  Well, his DS clinic was in January.  I jumped to the conclusion that he would be seen by dental at the clinic.  As circumstances would have it, the dental staff was at a conference the day we were they.  Therefore, Josiah was never seen.  I've been meaning to call our local office to reschedule that.  By the end of next week, that appointment will be completed!  (And, as luck would have it, they are able to see the older boys at the same time).

Oh yeah, when I talked to the dental office, they asked about Josiah's health.  When I told them about Josiah's OHS (open heart surgery) last January, they asked for something in writing from the cardiologist.  They need to know if Josiah requires pre-meds for dental visits.  Wow!!!  Not once have I ever considered that possibility.  I said, " I don't think so."  As I thought about it more though, I wonder....  My Mom has a steel plate in her toe and requires antibiotics before dental work.  Josiah's sternum was put back together with steel ties after surgery.  Hmmmm.  Well, needless-to-say, I have a call in to the cardiology department.  I'm waiting to hear from them. 

Meanwhile, Josiah's orthopedic appointment is in a few weeks; His next DS clinic is in September; and, his next vision follow up is in October.

There!!!!  I did it.

Now, I just need to call the pediatrician's office at the end of August to schedule his flu shot.

My theme this week: It truly is the little things :)

DS Clinic

Josiah had his second visit to the Down Syndrome Clinic.  We were up at 4am; we woke the boys at 5am.  We knew it was going to be a family trip; we had to leave too early for school to be an option.  We were only five minutes late leaving.  6:20am - we left the house.

It's amazing that traffic can be such a nightmare at that early hour of the morning.  Of course, when you take into account the rain, it stands to reason.  None-the-less, we arrived at our destination at 8:20, parked, and walked into the lobby at 8:40.  Official check in time is 8:30, so C and the big boys headed for breakfast.  Josiah and I headed up to the DS clinic.

By 9am, he was getting height/weight checked.  Height 29.5 inches.  Weight 21lbs 5oz. Yay!!!  The boys joined me upstairs after a short time.  They came bearing Mama's breakfast - so sweet.

Before long, we were called in to see PT (physical therapy).  A nice padded mat was on the floor.  On it, were several fun toys.  Josiah was pleased to have some floor time, especially after the long car ride in.  He cleverly showed off his ability to roll, sit, get into and out of sitting, side-sit, and the like.  Josiah was proud to demonstrate his ability to get onto all fours and rock back and forth.  He even scooted forward a little.  The PT told us what we have known for weeks - Josiah is just on the cusp of crawling.  It's going to happen any day now.

Next, we met with nutrition.  The meeting was brief.  Josiah's weight is no longer a concern.  His height to weight ratio is the 50th percentile....so he's simply perfect :)

Next stop - Dr. D, whom we adore.  Josiah was happy to smile for her.  Dr. D. was proud of how far he has come since June.  She is very pleased with his progress.

Final stop, this time, was OT (occupational therapy).  It was close to 12:30 and Josiah had reached the end of his tolerance.  He was in tears by the time we reached the last room.  I quickly pulled out a few jars of baby food.  He ate.  He nibbled on a few goodies, from the OT.  She wanted to watch him eat.  Finally, he nursed and fell asleep in my arms.  He was a shot little tot.  It was around 1pm.  He had reached the end of the road.  Best of all, everyone is pleased with his progress.

The day would have been longer, but a few hiccups made for a shorter day.  The dentist was at a conference, so we couldn't check in with them.  Josiah is being treated for an ear infection, so audiology was off the table.  We also need to schedule a cardiology follow up, as well as a first vision appt.  So, four appointments to go....all outpatient and closer to home.

By the time we stopped in the cafe for lunch and made our way home, it was about 4pm.  We were exhausted but very content.

This little miracle continues to amaze us everyday.  Our life is so very blessed.

PT, Weight, and Cardiology

Josiah's PT appointment, yesterday, was another success.  He met D with huge smiles.  He was happy to demonstrate his tricks for her, again.  He recognizes certain things as being 'work', thus is more apt to complain during the session.  He is making huge strides every week.  We need to continue to work on his head control.  His arms/legs are making significant improvements each week.  It's fun to watch him accomplish new goals.

Josiah had his cardiology appointment this morning.  As planned, I woke him early to nurse him.  Then, I offered him a bottle of high-calorie formula.  He drank 2 oz before it was time to leave.

He slept on the way to the MD.  He was in a good mood upon arrival.  After the usual check in and EKG, they brought the scale in.  11lbs 2oz.  I had estimated an 'ideal' weight of 11lbs 4.5oz for this a.m.  We were only 2.5oz off....I'm elated!  It was so much better than I feared.

The cardiologist is wonderful and he is thrilled with Josiah's progress.  Josiah's heart is no longer a concern.  Josiah doesn't need to be seen again for six months.  The appointments are backing off....a sure sign of improvement.  We are so thankful.

Meanwhile, today is day 4 of my new no-smoking campaign.  I'm shocked by how easy this has been.  I've known, for a long time, that I was ready to quit.  I knew "cutting down" would never work for me.  I knew it would be an "all or nothing" approach.  This has played out well.  I have no physical cravings.  I have 2 or 3 "psychological/behavioral" cravings per day.  They only last mere moments; I am able to easily redirect myself.  After 27 yrs of smoking, believing it was going to be this easy would have seemed delusional.  I am so thankful for the reality.

Tomorrow, we will join a new group of friends (all of whom are blessed with a child with DS), for an Easter Egg hunt & lunch.  The siblings are all coming too.  I'm really looking forward to meeting our new friends. 

Sunday, family is coming here to celebrate Easter.  I remain in awe of the miracles that have blessed my family.  I remain thankful.....to so many.....for so much <3

Waging the Weight Battle

So, it occurred to me that Josiah will be weighed in the morning.  This is routine during his cardiology visits.  I tossed him on the scale today....10lbs 11.5oz.  Are you serious?  I feel like the last two weeks has been a series of experiments gone wrong lol.  I had stopped supplementing; that came back to bite me in the butt.  I'd gotten lazy about pumping; I need to make an extra effort now.  I've been letting Josiah sleep at night (generally 9pm until 7am); I will resume the midnight wake-up/feedings.  Given that he weighed 10lbs 6.5oz 2 wks ago, he should "ideally" weigh 11lbs 4.5oz tomorrow morning.  UGH!!!  This continues to be a huge frustration for me.  I cannot wait until we're at the point where we can relax for a minute without the fear of the "weight thing."  So, I'll give him a few extra bottles tonight, in the a.m., and hope for the best.  I'll fix the aforementioned things, in the meanwhile.

Tomorrow's cardiology appointment should be a breeze.  Josiah is doing great post-surgery!  We anticipate no problems or surprises.  We just need to fix the weight issue before we see the pediatrician again :>

I think it's time to touch base with KF again.  Soon.....this is driving me CRAZY :)

Just an Average Tuesday

My decision, yesterday, to quit smoking had not come without consideration and contemplation.  It was years of thought thrust into a split-second decision.  I gave myself the rest of Monday to smoke.  It was understood, I would not smoke today.  And so it has happened.  I had my last cigarette at 12:30am, just before retiring for the night.  I haven't had one since.  It's been 21.5 hours, and counting.  So far, so good.

Yesterday, Jesse had school as usual.  James had fun with EI.  K's arrival was met with squeals of delight.  Today, the children returned to playgroup; it meets in the afternoon now, so even Jesse can join in.  They all enjoyed that which has become so familiar.

Tomorrow, James starts a new EI group.  Josiah will tag along, as the baby brother.  I'm looking forward to seeing how he reacts to a new group.  K will return in the afternoon to work with Josiah - something I really look forward to.  Jesse and Daddy have an outing tomorrow night.  On Thursday, Josiah will work with D.  Friday, he has his next cardiology appointment.

I'm trying to keep track of Josiah's weight, from home.  I finally set up the new baby scale.  I weighed him on Sunday.  10lbs 10oz.  He had weighed 10lbs 6.5oz, 9 days previously.  Ideally, he would have weighed 10lbs 15oz.  We're about 5oz off.  I had stopped fortifying his bottles; I immediately resumed the fortification process.  Yesterday, I weighed him but it was later in the day...11lbs even.  He had just eaten.  I just realized that he'll be weighed on Friday (at the cardiologist), so I'll try to make sure his weight is "up there" before we go lol.

So, all in all - no big deal.  Ongoing weight checks, EI, PT, playgroups, preschool, cardiology, and quit smoking.  No problem!  :)