Welcome to our journey!

If you are new to our blog, you may want to start with Beginnings - Part 1 and Part 2 to catch you up to speed on Jackson's arrival on December 11th, 2010 (yup, 12/11/10).

Monday, January 31, 2011

Tough little man...

As I sit here listening to Jackson's snores, I can't help but think about his future and his health.  I have read numerous accounts on what type of delays Jackson may have, but still think that he is going to surprise people.  I mean, come on, he's already flipped over twice and he's only 7 weeks old.  He's an old pro! 

I was planning on posting on Friday after Jackson's evaluation with the Infants and Toddlers program.  I contacted them in hopes of getting him started with early intervention with a physical therapist, special educator and developmental pediatrician...and then they canceled that morning...city schools were closed...some roads are still a mess and parking sucks.  Ok...and poor Adam even had taken off work to be a part of the experience.  Now we have to wait another month before he gets evaluated...I guess you can't complain too much for a free city service.  Jackson and I will keep practicing lifting our head and flipping over so we'll be ready to impress them come February 24th. 

Today we visited the doctor to get a special shot for Jackson...but let me back-track for a minute.  Due to Jackson's low birth-weight and heart condition, our pediatrician wanted him to get a shot that would protect him against RSV (Respiratory syncytial virus).  Now, RSV in an adult and typical child is nothing more than a cold, but in some babies can be severe and require hospitalization.  So this special shot also happens to cost thousands of dollars and only protects him for a month at a time...so if you get the shot each month starting at the beginning of RSV season, you could spend thousands of dollars (we were told the shot would be a minimum of over a thousand bucks PER SHOT...the most $4500/shot)...unless of course your insurance covers the shot.  Theoretically, Jackson is a prime candidate for the shot due to his condition and we were assured that Jackson would most likely be covered.  So you can imagine our surprise and disappointment when the insurance company not only denied the claim once...but denied the appeal that was made by our pediatrician.  We were even told about another baby just a few days apart from our Jackson with almost the exact same heart condition and Down syndrome who was approved right away (they had federal BCBS).  A few thoughts here...we had already received his first shot at the end of January, so we were just waiting for that dreadful bill to come in the mail.  We also struggled with what to do about the next shot.  If we don't get it for Jackson, are we bad parents?...But if we do continue to get the shots we will go through a significant portion if not all of our savings.  But what if he gets sick and requires hospitalization...how horrible would we feel if we didn't protect him against something because we didn't want to shell out the big bucks.  Gotta love how our insurance dictates how we care for and protect our child's health.  It makes me fee like this...

In the end, we decided to skip the shot.  We decided to play the odds and avoid crowds and germs...and then we got a call from the pediatrician... they had "leftovers" from another patient that could not be returned to the company that produces the shot.  They wanted to offer it to Jackson...at no cost!  And guess what...turns out that the original shot was "leftover" too!!!  Some things just seem to work out in the end and at least he's protected for another month (and we can keep a few thousand dollars in our pockets)...and we are jumping for joy!

So today he had his appointment to receive his special shot...and managed to pee all over the table in the doctor's office...twice.  When we finally were cleaned up, we did the weigh in and little pork chop weighs 10 pounds even.  He has doubled his weight in 7 weeks!  I am quite happy that the little one had an appointment today since he cried so hard this morning while I was sucking big boogies out of his little nose that he burst blood vessels all over his forehead!  At least that's what I think happened.  The doctor had the nurse do a CBC (Complete Blood Count) to insure that he did not have low platelets which could indicate an autoimmune disorder.  Our pediatrician said the blood work looked great and as long as we didn't see it over his entire body, he was fine. 

Little popped blood vessels

I don't know how other babies do with blood draws, but Jackson is a slow bleeder.  We tried to have his blood work done twice before coming in to the office today.  It seems to clot quicker than they can get the sample drop by drop into these little vials, making it very difficult to get results, require multiple heel sticks and thankfully a very patient baby (with a few cries post-stick).  They did manage to get some results from his thyroid screening and his TSH (thyroid stimulating hormone) is elevated and our pediatrician will be consulting with a pediatric endocrinologist to see if we need to act on it.  Hypothyroidism is common in babies with Down syndrome so our pediatrician feels it may be a matter of do we start treating him for this now or later...we should know by the end of the week what our next move will be. 

Heel stick and toe stick

So all-in-all, our little pork chop is doing just fine.  With only a few tears, he showed how tough he is...just needed a few cuddles and some sucks on his pacifier and he was just fine!  As I finish typing, he's beginning to stir, so I know its just a matter of minutes before he ever so nicely tells me that its time to eat again.  So on that note, I'm going to try to straighten up the kitchen in those few minutes that remain...and perhaps after we eat, I may just get a shower in...

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