Tuesday, June 12, 2007

Letter from April 10th, 2007

Hello everyone!
Owen will be 8 weeks on Tuesday and we just can’t believe how fast the time has gone. Owen is, of course, a genius and we are not just saying that because he is our son. He has hit all his developmental milestones and continues to surprise us with new skills everyday. He is smiling and cooing and just generally cute all of the time. Dan swears that he said “Dada” the other day. In addition to being a genius, Owen is also extremely good looking. He loves to look in the mirror and also appears to be quite pleased with his reflection.
I am the envy of all mothers because Owen is sleeping 6 1/2 to 7 hours a night and last night slept from 12:00am to 8:00am. We never imagined that we would get a full night sleep with a 2 month old!!

As for Dan and I, we are delighting in the joys of parenthood. We knew before we had him that we would love our son. We were however, completely unprepared for the sheer strength of that love. Although I don’t believe that our love for Owen would be any different had we not gone through our experience, I do think that it has given us a different perspective. Everyday with Owen is a day that we thought we would be mourning him. The camera that we thought would be empty is full of pictures. The baby book that we thought would never be open now records his firsts. We are so blessed to have him and not a day goes by that we aren’t thankful.

Now for the big question – what is in store for our son? When we left the hospital after Owen’s birth, the doctors suspected that Owen had a type of skeletal dysplasia called achondroplasia.
Achondroplasia is characterized by abnormal bone growth that results in short stature. However, because Owen’s arms and legs measured small but were still proportionally larger than most babies with this condition, the doctors could not make a definitive diagnosis. On Thursday we had a meeting with the geneticist from U of M, Dr. Vinod Misra. Dr. Misra told us that Owen does in fact have skeletal dysplasia. Still in question however, is what type of dysplasia and what it will mean for his future. Dr. Misra believes that Owen has - I’m going to throw in another big fancy medical word – hypochondroplasia.
Hypochondroplasia is an even milder form of skeletal dysplasia. It is basically “Diet Achondroplasia”. There are many of the same characteristics only in a less pronounce form. In fact, often hychondroplasia goes undiagnosed as it is often confused with plain old shortness. Dr. Misra is still hesitant to label Owen because there are characteristics of hypochondroplasia that he does not possess. His head is not significantly disproportioned to his body. It is slightly larger, but not in an obvious manner (we think it’s due to his large brain). Owen’s facial features are relatively normal where as children with this condition tend to have smaller, flatter faces with prodruding foreheads. There are however, traits of hychondroplasia he does possess such as shorter limbs, a depressed nasal bridge, a short rib cage and a large abdomen. Dr. Misra pointed out that even despite these traits, Owen looks perfectly normal (unless you are a geneticist).

Dan and I were relieved to hear what the Dr. Misra had to say. Owen will not be subject to many of the health risks associated with the more severe forms of skeletal dysplasia. As far as his heath is concerned, he is completely normal and should stay that way. He will most likely be delayed in his gross motor development but it won’t mean much in the long run. He will hit all of his physical milestones, just a little later than normal. Instead of walking at 12 months it may take him to 18 months. Looking at the silver lining, this just means that we have 6 more months to relax before we have to start chasing him around!

Owen was weighed and measured at U of M and comes in at 10 lbs, 12 oz and 21 inches long. This puts him in the lower percentiles but he’s still on the charts. Owen was X-rayed and a skeletal survey will be done in order to plot his proportions. The blood thirsty geneticists also needed more blood which turned out to be a huge trauma not just for Owen but for Dan and I as well. They had trouble getting blood and ended up poking Owen 5 or 6 times. He was not a happy camper! It was extremely tough for us to watch our little boy screaming in pain. He was completely exhausted after the whole experience and slept for the rest of the day. We spent almost 7 hours and the hospital and still didn’t end up with any solid answers. It seems that we are in a wait-and-see situation.

As far as we are concerned, Owen is a normal baby and the absolute light of our lives. There is big possibility that Owen will grow up to be in the normal range of height and that his condition will be indistinct. He will never be 6’5 but he probably wouldn’t have been anyways!
As for now, we are enrolling him in the Early On program to help keep his physical development on track. We will have to go back to U of M every year so that his progress can be monitored. For now, Dan and I are ready to put this all on a shelf for a while. We want to concentrate on getting back to life with out medical drama.

Owen’s future is wide open and like any parents, we are excited to watch him grow and learn. We will keep the pictures coming (you can’t escape the pictures) and I will continue to send updates every once in a while. Once more, I’d like to thank every single person for their support and prayers. If Owen should in fact be a little different because of his height, we have no worries that he will be loved any less. Everyone’s reaction has been nothing but positive. This gives Dan and I tremendous comfort. We love you all and thank you for helping us through these past few months!


2 comments:

Anonymous said...

Love to Owen, Mom and Dad!!

Anonymous said...

The blog is great, Owen is such a cutie pie! What a very cool network of people we have going here, I can't wait to meet everyone.

Candi
YaYa to Bryan