Tuesday, September 3, 2013

Week 2: Grandparents, great-grandmother, cats, and serious news

As week two of Lemon's life got underway, we wrapped up our visit with Grandma Carol and Grandpa Dudley.  We had a nice lunch with them at our place, where Papa Bear and Grandpa Dudley celebrated Lemon's arrival with chocolate cigars.  For anyone who is curious as to what Lemon might look like when he is in his 30's or 70's, I don't think it's necessary to look further than these photos!
We also took Lemon for his first dinner at a "nice" restaurant with Grandma, Grandpa, and Nona.  One of the most rewarding aspects of being a new parent is seeing the utter joy that Lemon brings to his grandparents--the
 look on Grandma Carol's face says it all.

In honor of his two-week birthday, Lemon got to meet two more important relatives.  First, he finally met Opa (my father), who was off leading a hike in the Swiss alps when Lemon was born.  Papa Bear was very concerned that, because Opa was away on the day of Lemon's birth, he would have a hard time bonding with his new grandson.  Judging from today's interaction, I don't think that's going to be an issue!  Opa is already planning out hiking adventures that Lemon can participate in once he learns how to walk.

Lemon also got to meet his great-grandmother, Opa's mother.  She was very impressed by how much Lemon's coloration resembles his father's, and by what a good baby he is.  Since she raised four baby boys, she really knows what she's talking about, and we agree on both counts!

While the grandparents have all been overjoyed by Lemon's arrival, our cats Daphne and Denzel have reacted with significantly more skepticism.  When we first came home from the hospital, they spent most of their time hiding either under the bed or in the closet.  Now, they are back out in the open but they are in a constant state of heightened vigilance, waiting to see what Lemon might do next.

On a more serious note, during week two we learned that Lemon has cystic fibrosis (CF).  Papa Bear and I had learned that we were both carriers of CF mutations when I was pregnant with Lemon, so we knew that there was a 25% chance that he would have CF.  Although Lemon gained weight rapidly for a few days after we came home from the hospital, by a week of age his growth had really slowed down, and by the time he was diagnosed at 10 days old by genetic testing, his growth had almost completely stopped.  Luckily, the day after he was diagnosed, we were able to get an appointment at the CF center at Children's Hospital where he got a prescription for supplemental digestive enzymes to make up for the ones that are being made by his pancreas but can't get to his small intestine due to the excess mucus associated with CF.  We started giving him the enzymes right away and it's made a huge difference.  He's more comfortable, sleeping better, and most importantly, gaining weight--10 ounces in the 4 days since he started his enzymes.   Because body weight is correlated with lung function in CF patients, it's really important for Lemon to catch up to other babies his age, and then stay on his growth curve after that.  CF patients typically need 125-150% the calories of a normal person, so it will be a challenge for me to keep up with his demands.

A diagnosis of CF used to be a devastating event, and CF patients rarely survived beyond early childhood.  Luckily for us, research has advanced to the point where CF is a manageable condition, and we have every reason to think that with vigilance and dedication, Lemon should have a relatively normal life, go to school, play sports, go to college, and do everything else that he would have done without the condition.  His life (and ours) will be much harder than if he did not have CF, but the fact that a normal life is possible for him is all that matters to us.  So, although this is very sobering news, we want everyone to know that this is still a very joyous time in our household.  Lemon is a delight and we wouldn't trade him for the world.

The Cystic Fibrosis Foundation  (CFF) is a non-profit organization that has been leading efforts to find a cure for cystic fibrosis, and to improve the quality of life for people living with the disease.  It funds cutting edge CF research, and also provide access to new treatments for CF patients who cannot afford them.  I would like to encourage all of you to consider donating to CFF on Lemon's behalf to ensure that research on CF continues uninterrupted despite the unfavorable funding climate at the NIH.  I plan to use all of my future athletic endeavors to raise money for CF research, so stay tuned to read more about what the events will be and how I'll be training.  I hope those of you who are inclined to walk, run, and bike will join me on these outings.  I will make cool T-shirts if you come!

According to an African proverb (made famous by Hillary Clinton), it takes a village to raise a child.  This is especially true of a child with a challenging health condition.  Thanks so much to all of you for being part of our village.  We couldn't do it without you.

1 comment:

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