When we found out about Landree's chromosome issue when she was two weeks old, we did some research online, but quickly found out that only induced anxiety. I didn't feel the need to read about thousands of children with the same syndrome, when there was such a spectrum. Obviously, we wouldn't know what end of the spectrum she would be on, but I didn't want to worry myself about anything I didn't have to worry about. However, through my short-lived research, I discover there was one doctor. Just one. That had dedicated his career to Landree's syndrome. I knew immediately I wanted to meet him. I wanted him to meet my Landree. I knew that he would be able to give us answers.
You have to understand that every doctor, yes -- every doctor -- we've seen hasn't heard of her syndrome. It's that rare. It's one of the reasons I very rarely share the name of it with anyone. It's not important. It doesn't define her. Plus, I know no one has heard of it, anyway. So, when they are examining her whether it be her pediatrician, the neurologist, the orthopedic doctors at Scottish Rite, or the surgeon, and the list goes on...they are puzzled by what they see and can't offer any advice, explanation and little help. Her neurologist, our favorite, offered the best advice and that was, therapy. She told us, "I can do a hundred MRI's on her, " but that will do nothing for Landree. Therapy, therapy, therapy. So we took that advice and ran with it. That girl is in EVERY therapy we could get our hands on.
So, When Landree was about nine months old, I called to make an appointment with the amazing Dr. Schaefer. I had connected with an AWESOME mom whose precious baby girl had the same syndrome. She raved and raved about Dr. Schafer and told me that he was so sweet, loving and would absolutely adore Landree...and the BEST part...he would know all about my child!
That appointment was scheduled for this past Friday, August 9, 2013. A date that will go down in the history books for the Aldrich family. One of the best days we've ever had! We left the day before and stayed the night in Little Rock since our appointment was at 11:00 the next morning. I can't lie, I was overwhelmed with some fears and anxieties. I knew this man was going to be very accepting, comforting and knowledgeable. But....what would he tell me? What news was I going to receive? I felt myself tense up and become very preoccupied with my own "what-ifs" that morning. Austin at one point stopped me as we were loading the car back up and said, "Hey. Whatever it is that's bothering you, don't let it. It's going to be fine." I had to have faith. God lead us to this wonderful doctor.
Landree was in typical Landree fashion that morning -- happy, bubbly, smiley and downright ADORABLE.
Finally, Dr. Schaefer came in the room along with the genetic counselor, a resident, and another doctor that neither Austin nor I can remember her title. Regardless, the room was full of doctors but it wasn't intimidating or an unfriendly environment at all. And the genetic counselor - LOVED her! She didn't do any questioning or anything. She just sat in there for support to answer any genetic questions we may have had. I instantly felt bad for my bad attitude.
Dr. S himself, what an amazing man! I remember Dr. Schurele, the geneticist at Medical City, described him as "a lovely man." She was right. He was downright pleasant, soft-spoken and approachable. I told him I had a laundry list of questions, and he told me to bring them on! He was glad we had made the drive and wanted us to get all the answers we wanted. When he looked at Landree, he looked at her as if she was the kid next door. Typical and nothing special. We rarely get that from doctors. They're always trying to figure out what's wrong and dissect each issue, whether they know what they're trying to dissect or not. Austin put it best. He said, "It's such a great feeling to take your child to a specialist, and they're completely unimpressed with your kid." Yes! Well put, Babe! Dr. S told us what he was seeing was normal. Umm...what? I'm sorry, did you just use the words, "normal?" Because I've never heard those words muttered by any medical professional when dealing with Landree. How refreshing!!!
All the things we've been "freaked out" about whether given reasons given by doctors or just because we're her parents, he put to rest. Her spine, which has been a source of worry since she was very small he said, "didn't look that bad." When we told her she doesn't roll over, sit up longer than five minutes at a time, or do any kind of pulling up, he told us that was to be expected. When he stood her up to see how her legs and feet worked he said, "I actually like how she's standing and compensating for her low tone." Really?! Because all we've been told is that it's sad she's not standing. And here he is complimenting it!
He told us she would lose the feeding tube in a couple of years, so not to worry about it and just try and focus on the fact that we want to protect her airway in these early years, but that it will come. He said that she will walk in her own time and to keep up with the therapies. There was nothing that alarmed him or felt like he needed to keep seeing her. He was perfectly happy with how she is.
One of the things I've said all along is that Landree is a child, not a syndrome. This syndrome will not determine who she is or who she is going to be. Landree will define it, and let us know what she will be and what she will do. Dr. S basically said the same thing! I was so overjoyed!
Finally, he told us not to let her physical delays worry us about her cognitive development. The two are completely unrelated and does not determine her cognitive ability. That was so wonderful to hear, as well. He completely made the most of our time and made us feel comfortable and at home, as if we had seen him a hundred times prior.
He encouraged us to come to the conference next summer held in Little Rock! He said it's wonderful to be surrounded by families with children with the same syndrome to talk to other parents and have a network to be in touch with. I'm looking forward to that!
We're thankful everyday that God has blessed us with Landree. We're thankful everyday for WHO she is and who she is going to be. She definitely already defines the syndrome in her own way and is the best kid with an amazing spirit and personality. Love this baby girl! Thankful for wonderful doctors and resources to help us better understand and support her however we can.
And thank YOU for all your prayers and support over the last year. We couldn't have done it without the love of friends and family.
