Getting Started

I tried doing a blog once before, but it never worked out.  This time around, I'm a little bit more passionate about my topic.  You see, my 3 month old son Graeme was diagnosed with achondroplasia when he was 7 weeks old.  In my efforts to learn more, I ran across several blogs by moms chronicling the lives of their children with achondroplasia.  This has meant more to me than I can express.  Getting to see pictures, hear stories, and learn about these kids and how they grow up helped normalize the situation for me and allowed me to adapt to this news.  So I've decided to create my own blog to add to the mix in the hopes that it may help someone one day the same way the blogs I read helped me.  I guess I'll start by catching up on the past three months...

To read about my pregnancy, Graeme's birth, and his diagnosis, you can read "The Beginning" page linked at the top of this blog.  Today Graeme turns three months old.  It's pretty exciting to make it to this benchmark.  It seems like he is growing bigger by the day and more of his personality is starting to come alive.  He's smiling now, which can melt your heart.  He started turning over from his tummy to his back when he was about 6 or 7 weeks, although he still doesn't do it every time.  He can lift his head and hold it up for a little while and turn it from side to side.  And for the past several nights, he's been eating at 7:30 PM, going to bed, and not waking up to eat again until about 1 AM or so.  Steven and I are thrilled about that!

Of course, there have been rough patches along the way.  Graeme wouldn't latch properly, so I've had to pump and give him his milk in bottles.  He also has had a lot of tummy troubles from reflux and gas.  We've had to elevate his crib mattress, give him Zantac twice a day, and add a little oatmeal cereal to his bottles.  He still has some bad gas episodes, but it's definitely improved over time.  He also wouldn't sleep for very long stretches in the beginning. Steven and I used to split the night between the two of us, with each of us staying up for half the night to take care of Graeme.  Now that he's sleeping between feedings and for longer stretches, we can finally sleep together and use the monitor! We've also probably had more doctor's appointments for Graeme in 3 months than we'd ever imagined.  Aside from pediatrician visits for checkups and reflux issues, we had his first appointment with the geneticist.  She had x-rays done and made his achondroplasia diagnosis.  We then had a CT scan to check on the size of his foramen magnum to make sure there was plenty of room for his spinal cord.  A common problem for babies with achondroplasia is compression of the spinal cord.  They also checked for hydrocephalus, another issue for achon babies.  Luckily, everything looked great! We then had a visit to the sleep doctor, who scheduled him for a sleep study to check for apnea.  Because achon babies often have smaller airways, they may have breathing problems.

Next up on our list is Graeme's sleep study.  It will take place this Friday night.  I'm pretty nervous about having so many wires attached to my baby.  I'm really hoping he still sleeps well, particularly since this will throw off his schedule.  We've been feeding him about 7:30 PM and he goes to sleep after that (usually by 8 or 8:30) and sleeps until anywhere between 12:30-2:00 AM.  However, we are supposed to get to the hospital for 9:00 PM for the sleep study and leave at 6 AM.  I'm not sure how this will affect his sleep routine since he'll be woken up by going to the hospital and getting everything set up for the sleep study.  I'm worried it's going to be a rough night for everyone.  We see the pediatrician again in another month for his 4-month well visit, and our next appointment with the geneticist will be at 6 months (in another three months).

Overall, there have been some challenges, tears, and frustrations.  We've also had a lot of learning to do in order to take proper care of him (like learning that we couldn't wear him in a carrier which was so disappointing to me!).  But our precious baby boy is just so perfect.  I love seeing the multitude of expressions he gives us...he's so full of personality at such a young age!  And his determination shines through for everyone to see, which I know will be incredibly beneficial for him in the future.  I can't wait to watch him grow up.