Happy New Year! Its been over a month since I’ve written, and I’m not sure where the time went! We spent a couple of really great holidays with family and friends, and things have been very busy. Lucas has met many new family members in the past several weeks. We were excited that Bran’s grandmother, Mima, made the trip to DC last week to meet Lucas for the first time (although not nearly as thrilled as she was to meet him!) She has called a few times since returning to Alabama asking if Lucas misses her as much as she misses him! Of course he does… she had a way of making him smile so much! Most importantly, Lucas is still doing great, in good health, and continues to surprise us. We’ve been absolutely amazed at the changes and progress with him in just a month.
Our little man is growing up… he’s outgrown his bassinet and officially moved to his own room, has become very vocal in telling us what he wants, is starting to reach for things, and is now teething (already, can you believe it)?!
The biggest news we have to report is that his eyesight has improved dramatically! In early December, just after the vision teacher started working with him, he started to take interest in items in front of him. I’m not saying it is a direct result of the work of the vision teacher (although she is wonderful), it is more likely it just took some extra time for his brain to wire correctly and bring this function in for him, coupled with giving him the right kind of
So, his vision improving means… smiles, smiles, and more smiles! He is so much more interactive and is turning into a very happy baby. These have been long awaited and we’re loving it! He’s even started to giggle, which sounds a little like Tickle Me Elmo! I read a quote the other day from a friend that applies so much lately (“I wish you enough pain so that even the smallest of joys in life may appear bigger”). After the journey we’ve had this year, getting to see him smile while looking straight into our eyes is one of the biggest joys I’ve ever felt.
We had a slow month in December in the area of doctor appointments, so there’s not much to say other than it is nice to have a break from so many clustered together. January will be a full round again of follow-up appointments with the Pulmonologist, GI, Neurosurgeon, Developmental Specialist, and Opthamologist. I’ll write another update in a few weeks to let everyone know how those go.
We did get the results of the sleep test and they diagnosed him as having “severe apnea obstruction” and ordered that he be on oxygen at night. They said the study showed that there are times that he is trying to breathe but something is blocking his ability to effectively pull in air. This is not good news to us, but better than the alternative of it being central apnea (which would be neurologically related). The episodes are not so severe that he stops breathing for long, but according to the brainwaves, it is enough to cause him to continually wake up. This disruption in breathing impacts how hard his lungs have to work, and ultimately the calories he burns and his ability to gain weight (as weight gain is the most important thing right now for his overall health and progress). So, we’re stuck dealing with oxygen until we figure out what is going on with him. Against our wishes, we had a big truck deliver tanks to us several weeks ago, which was kind of a kick in the gut, as we felt like we were moving backwards (we never thought we’d be dealing with oxygen after four months at home and continuous healthy lung checkups). The test results also have us continuing with the apnea monitor at night for a little while longer, even though she was right on the edge of releasing us from it last month. I can’t wait for the day we can get rid of that thing!
Here’s the other side of it though… he had a cold the night the sleep test was done and was pretty congested, which we were told could have completely thrown everything off
The OT appointments are still going well, and he’s getting stronger every day. He’s not progressing quite as quickly as we would like with his stomach strength, and he’s not quite able to support himself on his arms yet for more than a few seconds (so he’s a couple months behind on hitting these milestones). He should be rolling by now too, which we practice every day. But, we keep working at it and we know he’ll get there on his own time. She did confirm this week that his left side is starting to show signs of being tighter than the right side (mostly his left arm and shoulder), and it is something we’ve noticed lately too. This has been expected, but still a little scary to have someone point it out and to think of what this might mean long-term. She gave us a lot of new exercises to do with him to try to loosen up these muscles, and the other day I literally watched his range of motion change just after she stretched him out. I’m seeing now how these early intervention services do really make a difference… she said if we did not work with him on this tightness, then he would not have the range of motion in order to strengthen the muscles that he needs to use the limb… which means without strengthening, he would use that limb less and less… causing it to get even tighter and more unusable. So, it is kind of a ripple effect if the muscles that are vulnerable are not worked properly in the beginning. She reiterated that it is too early to tell if this is the first sign of CP, that with the proper therapy, he has so much opportunity. She said she worked with one baby a few years ago that was so tight in all four limbs that he could barely move, and she thought for sure his future was going to be very challenging with early signs of CP. But, she worked with him very early and consistently, and today he is a 3-year old that has full use of his body. Although he is still tight and has less range of motion than a typical child, he just requiress some additional stretching… and that he functions normally! We pray that this is going to be the case with Lucas, although if it turns out to be CP, that’s ok too. Maybe I’m too optimistic, or have blind faith as his mother, but I believe with everything he’s done already, he’s going to continue amazing us.
I have to tell one story from our holidays that was very touching. When we were in Ohio, we attended my Mom’s church for their Christmas service. We were overwhelmed by the number of people that welcomed us, so excited to see Lucas – “the baby they’d heard about all these months.” The pastor even asked us to stand up while he introduced Lucas to the church, and said “this is the little miracle we’ve all been praying for all year.” He said he was so happy to have the privilege of finally seeing him there in person, and presented him with his first Bible. I know Lucas was on a lot of prayer lists at various churches this year (which we appreciated so much). Being there with Lucas that day was very meaningful… our little miracle that defied all the odds… and so healthy… it was one of the proudest moments of my life.
The other part of that morning that I have to mention, was meeting a little five year old girl who was also a 25-week preemie... she was my inspiration for many weeks (and she never knew). It was such a pleasure to finally lay eyes on her, especially while holding Lucas. Back in March, when I was in the hospital trying to hold on to the pregnancy at week 22, my Mom told me a story about a woman at her church who had her baby at 25 weeks. That woman told my Mom to tell me to hold on, and that everything would be ok, and that today her little 2 lb baby is now five years old, and “fat and happy.” That comment always made me smile and as I made it to week 23... then to week 24… I would think, if I can just make it to 25 weeks, her baby survived and today is 'fat and happy.' I have to make it to 25 weeks. At that point, I had heard many success stories of preemies (but all born 28 weeks or later, which is when the odds increase significantly). But she was the only one I had personally heard of that survived born that early. Even after Lucas was born and we battled so many ups and downs, I often reflected on this little girl living in my hometown as a healthy child today.
So… we’re standing in a line at church, and I'm holding Lucas facing outward, and this beautiful little girl is standing in front of us, dressed in a fancy Christmas dress with her hair all done up… she is completely staring at Lucas, and smiling at him. I had no idea who it was, but it caught Bran’s and my attention by how intently she was staring at him (and he was looking back at her). We actually said to each other, “look how she’s staring at him, isn’t she so adorable?” At that time, my Mom says, “Angie, this is the little girl I’ve been telling you about!” We were shocked, I didn't even think about seeing her that day. We were then introduced to her and her mother, and the little girl reached up and just held on to Lucas’ hand for several seconds (she could care less about meeting Bran and I, she just went straight for Lucas). It was indescribable. I wanted to get down on my knees and hug her. At five years old, she will never know how she gave this 35 year old girl the hope that was needed for many weeks. Maybe this sounds corny, but it was a powerful moment that Bran and I won’t forget, we talked about it for days. I hope that someday Lucas will give someone strength in a similar way.
I’ll close with saying, “Thank God 2007 is over!” In the words of Bran’s Dad, “out with the old sh*t, bring on the new!” What a rough year it has been, but an amazing one just the same. We are grateful for getting to spend a special and memorable “first” Christmas with Lucas, our families, and the kids (which was also their first Christmas morning to wake in our home)! We are looking forward to a new start, and are very optimistic for good things in this new year.
**I’m working on several few photo albums from the past month and a half (sorry some of these are so delayed in getting posted). I posted a couple and the rest should be done later today or tomorrow. I’ve also included a few videos of Lucas with our families during Christmas week that are really cute.
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