We started the trip yesterday morning before five am. I dont know if I have mentioned it but Bobby HATES his carseat, so the earlier we left town the better chance we would have that he would sleep on the way. He did great till about the last 30 minutes or so when we were having trouble finding the hotel...so it made for a very stressful last half hour of the trip. But the rest of the day was so wonderful that it fully redeemed itself. Once we got settled at the hotel and got reorganized we headed out on the town. We drove to the nearest metrolink station and hopped on the train to go downtown to the Arch. Bobby loves the train! He could just be held instead of being in his dreaded carseat and he loved to people-watch everyone getting on and off. We all loved to look outside and catch sights of the town and dang that thig sure moves fast. We made multiple stops and I bet each one only lasted 30 seconds before we were moving again. Then once we got downtown we had the stroller and the weather was beautiful! All the leaves were orange and were blowing, the air was crisp but not cold and we were just a cute little family on a stroll in downtown St Louis. I felt like I was in a movie. We went up in the arch, spent way to much money on the dorky pictures to remember it by, and then we were on to the Cardinals stadium. This is where we met another family that was in town to visit the children's hospital too. This little boy had two club feet and then a similar condition on both hands (not sure what you would call that, club hands? in other words all his joints were facing backwards when he was born). They had been coming back and forth from new Mexico to get help. They just had the best things to say about the Shriner's hospital. This got me really pumped about appt. But most of all, meeting them made me realize how lucky Bobby really is...this little boy had such good spirits but he had quite a hand dealt to him...he had already been through multiple surgeries and was no where near being finished. He was fighting a for strength in all four limbs! It just made me think Bobby's little arm just seemed so minor in comparison to what this little boy was going through.
Anyway on to the actual appt. Everyone was so nice! As soon as we got the there were two old men Shriner's sitting in the front room just bullshitting and they kept playing with Bobby. As soon as they saw Bobby's arm they immediately lead me to another counter where they said was someone we just had to meet. "Susan" she was a woman that worked there that had almost the exact same arm as Bobby! I mean it looked JUST like it. She only had two fingers and it was a little bit shorter (of course Bobby's is alot shorter) but anyway she spent the whole day traveling around with us letting me pick her brain about anything and everything I could think of. She said he will be able to do everything! She is the centerfield and best hitter on her softball team. She is a bow hunter. She does everything! She even brought her mom into talk to me mom-to-mom about it all. They both gave me their emails and phone numbers for any and all future purposes. That was priceless for me!
We were first sent off for X-rays, then off to photography (so you can see the progress from appt to the next) and then it was off to the exam room. First, it was the occupational therapist just asking questions, then it was a Resident doctor examining him. Then the whole crew came in! There were 6 doctors to be exact, plus the therapist! It was kind of overwhelming! But wonderful! The head honcho was amazing! Such good bed side manner! I couldn't believe it! (I find that most specialist's are so smart they aren't very social). He spoke directly to us and on our level. He took his time and answered everything I asked about and more. He even gave me his email address so I could ask any more questions I think of! (AMAZING!) Anyway when he examined him he had some interesting things to say.
His actual diagnosis was ulnar deficiency. Bobby is missing the outside bone in his forearm (the pinkie side) and it's not just the bone that is missing, it's all the muscles and nerves that go along with it. Because its missing completely Bobby's case is considered a stage four (the most severe). He shows us where his actual elbow is (not where we thought it was AT ALL!) His elbow is actually in the right spot and not rotated at all. What we are seeing that is bent forward (and what everyone had always assumed is his pointed elbow joint) is actually his forearm that is curved. He said Bobby's elbow will most likely not bend or have any range of motion so the idea of trying to lengthen or straighten that curve in his forearm might actually make it harder for him to use functionally then if we leave it alone (even though it might "look" better). Imagine Bobby's arm bent the way it is and him trying to get his hand to his mouth (without the elbow being able to bend) now imagine if we lengthened his forearm and straightened still without any bending at the elbow...he would never be able to get his arm near his mouth. He essentially will just have one long limb from shoulder down. They said they have tried to restore motion in elbows before on other kids but they haven't had much luck and there isn't a whole lot they can do.
As for current uses of his arm...he can use it how ever he wants! He seems to have full sensitivity and so he will probably adapt to using it in every way. He may crawl, and he may not, he may just drag it when he crawls, he may do the army crawl on that side, he may put pressure on it the normal way...they said whatever he wants to do should be fine. He isn't going to hurt it. We did talk prosthetics for a minute...but they didn't think that was something we should pursue. Its actually harder for a child with a prosthetic because they lose all feeling when using one...and based on their exam today they think Bobby has full sensitivity in his hand so it actually would be like taking two steps backwards. So at this point prosthetics wouldn't be beneficial for him...maybe as an adult...but we will let him make that decision.
I asked what on earth caused it and he said the scientists have no idea what causes this. It happened when cells were developing in the limbs in like the first 4-8 wks. So everything was already formed like this before I even knew I was pregnant! He said this going wrong was so random that the chance of something like this with another pregnancy of mine or even with Bobby's kids is so rare! He really didn't want me to be concerned with that at all. The genetics doctor had said that same thing but I love hearing it again. He said there was absolutely nothing I could have done to control or avoid this. It just happens and its amazing that things don't go wrong more often when you realize how many millions of steps go perfect to make a healthy baby. He said I am lucky its the ulnar bone missing and not the radius, when its the radius deficiency its usually tied to alot more issues and/or syndromes. The ulnar doesn't show any connection and he thinks is an isolated issue. I asked him if there was any chance that we might still have some problems show up and he said he would be as surprised as we would be. He highly doubts anything else is involved...and we have been cleared for almost everything. (this is WONDERFUL news!)
He said they want us to come back in 6 mths so they can see how he is using it. And if there are things that can be done to improve his functionality then we can assess them. If we do any surgery it will probably be within 2-4 yrs of age, before kindergarten. But at this point they are happy with how well he is using it, grabbing at things and opening and closing his fingers. I have to admit that I am relieved that no surgery is involved at this point. That would have been REALLY hard on me. But I am a tiny bit disappointed that we won't be able to help things "looks wise" since I know that will be important self image wise for Bobby. I am counting my blessings that he is able to use it and its functioning so well though, it could be SOO much worse! Thank you for all your support and for listening!
Bobby was having a great time at the hotel...can you tell?
