Logan's Baptism

A couple of weeks after Logan's birth my parents came for a visit.  During their visit my father, an Episcopal Priest, conducted a home baptism because really at that point we were unsure of Logan's long term prognosis (and really in a way still are...)  I am also an Episcopalian.  Did Logan's birth shake my faith?  A little...  Were there things that were really hard to understand?  Yes.  Did it turn me away from my faith?  No.  

In in the summer of 2011 Logan, Reyna and I were able to travel to my hometown of Pennsylvania to visit with my parents as well as my sisters and their families.  While we were there we were able to recognize and celebrate Logan's Baptism in the church where I grew up.  It was so special that we could do this with my church family and I could not be more thankful that Logan had remained so strong and healthy.  As my father is the priest of this congregation he again led Logan's ceremony.  

Logan's Lip Surgery

When Logan was nearly five months old he had his first surgery.  This was to repair his cleft lip.  These surgeries are often done around three months or so, but due to Logan's extensive cleft and slow weight gain his surgery was held off a bit longer.  Our biggest worry was the anethesia and according to the doctors this would be the biggest concern.  We were also quite concerned with how Logan would do after surgery, especially with the pain and relearning to eat.  Luckily Logan (and Seth and I) had lots of support from family as my parents, two sisters and one of my nephews flew out to help.  Prior to surgery Logan was really happy even with his empty tummy.  He was particularly fascinated with the giant yellow booties they gave him.

Logan did wonderfully during the surgery which lasted about three hours.  In addition to his plastic surgeon repairing his cleft lip his ENT also put in his first set of ear tubes to help prevent ear infections. Afterward Logan did well in the recovery room and we were able to give him lots of snuggles while he woke up.  All along we kept thinking about how much Logan's nose would change.  What we never really considered is how much his mouth would change.  Yet this is the feature Seth and I both noticed first, how tiny his little mouth had become.  When he cried a little after surgery his mouth looked so very small and his cry was even littler too (although he grew back into his full cry soon enough).  It was clear from the first glance that his surgeon did an amazing job.  

His cry wasn't all that was impacted though.  While at the hospital Logan was also able to have his first true smile with his beautifully mended lips.

Logan's recovery was pretty tough and he spent a week in the hospital even though cleft lip surgeries are often outpatient or include a stay of only one or two nights at the hospital.  At first he was in the PICU and the care there was terrific.  His pain was managed well and everyone seemed to be familiar with Logan, his needs and his case.  However when he was transferred to the regular pediatric area several days later things sadly went downhill.  His pain was not managed well and he was not wanting to eat at all.  Once again this was the goal to get him home.   Also the nurses and doctors in this area kept nearly making errors (until we stopped them), changing their minds about various aspects regarding his care, and at times truly seeming not to care about our son.  This was our first experience with such care.  Seth and I had already planned for one of us to always be with Logan throughout his stay anyway, but now it felt we had to be awake all the time to make sure no one screwed up with our kid.  Not all the medical staff he had in this area were this way, but many were.   We never had the same nurses so when we got a good one we never saw them again.  Somehow though, the terrible doctor he had from the start in the pediatric wing never changed.  Even when he left the hospital he was in charge of Logan. Despite such challenges Logan continued to be a fighter through it all.

Logan hated the arm braces but they did help him achieve
independent propped sitting for the first time ever!

Finally Logan ate enough, enough times that he was able to tell the hospital doctor to shove it come home.  

As we expected would happen he did much better once in his familiar surroundings.

The work of his magnificent plastic surgeon:

 Before Surgery and Shortly After Healing

One Year Later
 (No additional lip/nose surgeries)

And his sister...  Loving, patient and amazing through it all as always.
All the family attention and new surroundings helped too!

With cousin Eli

At a wonderful family resource room in the hospital.
Places like these are such a blessing to families with hospitalized children.

Reyna playing with a special needs baby doll at the hospital

Logan home and happy with his Boompa (Grandpa)

Growth Hormone Deficiency

While Logan was still in the NICU he had several tests run by a pediatric endocrinologist since mid-line defects like Logan's often include endocrine system defects as well.  All of Logan's tests came back prior to his discharge from the hospital except his growth hormone tests.  Since the rest were all normal we were told his growth hormone tests should also come back normal.  The doctor felt this was especially likely since his thyroid tests were all normal and growth hormone deficiency correlates with thyroid hormone issues as well.  As would continue as the pattern for Logan, if a doctor stresses how unlikely something is or how minute the percentage of chance, Logan will defeat the odds.  His growth hormone measurement actually came back so low it was not in the measurable range.  It was so low in fact his endocrinologist had us do a retest as he felt there was a good chance the result was an error.  In Logan style it was not an error and came back just as low upon the second test.  Logan has growth hormone deficiency.  He will have a shot six days a week at least until he is fully grown and likely for the rest of his life.  Logan's thyroid was retested to ensure it was still normal and it thankfully it was.  This is just the way Logan rolls.  He is our one in a million (or billion) and he likes to keep his doctors on their toes and rubbing their brows.  (Seth and I have seen literal brow rubbing countless times.  It is always very reassuring.)

Unique...

...and adored.

Conformers

Early on we were informed that Logan would need conformers in his eye sockets to help them grow more naturally.  These would also allow him to one day have prosthetic eyes. In the beginning Logan's conformers would not stay in without being wrapped or bandaged.  The bandaging was hard on his skin and difficult to keep in place.  We were told that this would only be for a short time, but after several months we requested a second opinion from another ocularist.  His new ocularist was able to immediately fit him in conformers which would remain in on their own.  This worked for quite some time.  Unfortunately at this point Logan is able to easily remove his conformers and still has had little growth on his right side.  We are currently working this his ocularist to find what will work best at this point.

The photos below show the his first set of conformers which stayed in on their own.  

They have the small stems sticking out to make them easier to put in and remove.

Reyna's Second Birthday

For Reyna's second birthday we celebrated by going to the museum and having a small family celebration at home.  It was a great day!

Logan's School

Logan began attending a local school for blind children when he was only two months old.  The school serves children from birth to age five.  We are deeply grateful for his teachers and the services provided by this remarkable school. At this time Logan attends the infant program twice a week.  Parents attend the infant program with their child where they learn education and therapy techniques from vision specialists, physical therapists, occupational therapists, speech therapists as well as other early intervention specialists.  These individuals also work with Logan during his sessions.  His favorites are music therapy and the motor room but he usually loves it all.

Logan received this texture quilt on his first day of school

Logan in an exploration center at school.  

These are often called "little rooms."  

This is his "little room" at home.  We were given
the materials to build it from his school.

Exploring at school

With Daddy at school

One of Logan's favorite items at school