Monday, January 19, 2009

All four boys had a great weekend this weekend.  My sister came into town to visit and my nephew Nick came up from Ft. Hood to spend the weekend here.  It was so nice to see Nick, we hadn't seen him since he left for Iraq 15 months ago.  The babies went to their first party on Saturday!  Between the bounce house, the snacks, and all the friends under the age of 5, our four boys had a rockin' good time.  Then on Sunday, Ben and Alex went to another party for their school friend's birthday.  So they were hungover from candy, cake and soda.  Ah... to be a kid again!

Today Dorian had a big day. We took him for his follow-up Barium Swallow Test at the hospital's radiology department to see if he was still aspirating or not.  If his aspirating was as bad as it was when he was in the NICU, he would have had to get a feeding tube surgically implanted into his tummy.  But when he did the swallow test, only a small amount of liquid was going down his wind pipe.  So for now, no need for surgery.  Yay!!  We will begin to thicken his formula with a thickening gel since he swallowed much better with it that way at today's test.  We're now able to offer him a bottle at every feeding and then tube feed the rest.  In 2-3 months we'll get him tested again to see if we can get completely rid of his temporary tube.  Wish us luck!  We were so proud of him. 

Last week we met with our pediatric geneticist, Dr. Cramer.  She noticed that Dorian's liver is already beginning to become enlarged (typical with children with storage disorders), but it's nothing to be treated or concerned about at this point.  We spent some good quality time with her in looking at what the picture is going to look like for Dorian and Wynn.   She trained with some of the pioneering genetics experts in her field, so she offers us a great perspective.  We can see that she is truly dedicated to treating children and is passionate about her specialty.  

Being that alot of these ML II issues will become prevalent near the 6 month mark, we will be busy with many doctor visits around that timeframe.  We have been referred to an orthopedic doctor that has had experience treating kids with storage disorders, so it'll be good to have a proactive doctor to help us treat the babies' bone & joint issues.  In the meantime, we have established treatment at Scottish Rite Hospital for joint and mobility limitations the boys have with their hands.  Throughout most of the day they wear splints on their hands, which makes them look like they are wearing miniature boxing gloves.  So their new nicknames during splint time is  Wynn "Boom Boom" Johnson, and Dorian "el Macho" Johnson.   This week we will begin our physical therapy house calls done by an agency our neonatologist connected us with when the babies were discharged from the hospital.  That'll be nice to have them come to us -- very convenient.  

We also will be visiting a cardiologist within the next 1-2 months to have the boys looked at and ensure that their slight murmurs have stayed a non-issue.  Dr. Schiffmann, our neurometabolic specialist, is our quarterback for all of this.  He is one of very few doctors in the country that actually has experience treating this disease and we are very fortunate that he moved to Dallas recently and set up a practice here.   He did the majority of his specialty training at Duke and furthered his research & practice with the National Institute of Health (the NIH).   When we visited him last month, we noticed that he is focused on this family of disorders since he has had experience with seeing these cases from as far back as his days of residency.   We have faith that he'll be able to keep us on track on what we need to be looking at, and what actions and treatments are best for the babies.  

We are very happy at the level of care the babies have received from the time they were in the NICU at Medical City to our team of specialists we now have all on speed dial.  Everyone has been wonderfully compassionate and professionally passionate about helping us give our babies the best life possible.

When we picked up the big boys from preschool today, Ben and Alex brought in their coloring projects they did of Dr. Martin Luther King, Jr.  I asked them "who is this guy?" and Alex said "He was president."
"What did he do?"  I asked.  
"He said it was good for Red, White and Blue to be together."
So then I turned to Ben and his response to what Dr. King did was "He was nice and he wanted everyone to have fun."
So even though the boys didn't know all the answers about Dr. King, they both knew what his legacy was about in their own minds.  It's kinda like us -- we may not know exactly everything about this complex disease -- but we know the overall picture.  One thing is for sure- the best part of this picture is having two beautiful babies that are beginning to coo and that have their big brothers wrapped around their little fingers.   

Thanks to all our friends that have welcomed Ben and Alex on play dates while Chris and I are busy at the hospital & doctor visits with the babies, to those that have brought us dinners and gifts for the babies, and to those who continue to pray for us.   We are truly blessed with our strong support system.  

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