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Our Recent (Eventful) Visit to Johns Hopkins
We had our follow up visits at JHU a few weeks ago and the trip went very well, outside of a few "incidents"... My mom went with me this trip and Eric stayed home with Aiden and Emmi. It is hard for both of us to make the trip now. Aiden has so much going on with school and it is hard to have someone else come and watch the kids for 3 days. Eric had already met all the doctors that we were scheduled to see and we were anticipating that Max would not have any medical issues at this time. We left on Sunday morning and Max was a champ on the ride. It took about 8 hours total, with 2 stops. We stopped in the afternoon at a rest area outside of Breezewood and had a picnic lunch on the grass in the shade. Max was happy to be able to move around on the blanket and stretch his little legs! We made it to the hotel around 6:30. We got checked in and went to P.F. Chang's for dinner. (This is where one of the unfortunate "incidents" happened...if you are a FB friend, you have already gotten the highlights of this doozy!). We were sitting at our table next to a couple that was probably in their 50's. They were all interactive with Max in his high chair. He was smiling and talking and just being a social butterfly! The man asked "what is he, about 8 or 9 months?" and I said no, he's 14 months. I think his wife shot him a look for that (for the record, that did not bother me in the least!). So, after a while, the wife went to the rest room and we got to chatting with the man, who was super nice. He told us that they were in town from New Jersey because his 19 year old son has autism with severe rage issues and was being hospitalized at the Kennedy behavioral sciences hospital there (don't remember the name of it). We were chatting about that and I mentioned that we were actually in town to take Max to JH because he has achondroplasia. The man seemed genuinely interested and then, his wife returned... He told her that we were in town to go to JH and I explained to her about Max. I often tell people, "Like Little People Big World", Max has what the mom and Zach have." Most people are somewhat familiar with the show. Well, this women then said..."Oh, you know, those people on TV are, how shall I say, hard to look at..........." Yes, mouths a gaping at our table, as well as her husbands I think. What the heck do you follow that comment with? I was shocked! Now, I think do not think she was saying that about Max at all, but she certainly insulted an awful lot of great people I know! What a MORON! So, after a little more awkwardness, they left.... My mom and I agreed that we didn't say anything to her about her rudeness because her husband had been so lovely. Poor guy! She was truly a twit!
Anyways, we had our appointment with Dr. Hoover- Fong (genetics) on Monday and she said he is doing great!! He is about 50th percentile for height and weight for achondroplasia (the physicians assistant said if he stays on that percentile, he will be around 4 ft 4 in. That is taller than we were anticipating. I know a lot can change but, 1 inch can change a lot with how easy it is to interact in your environment.) His head circumference is still quite small for achondroplasia (although it is at the very top of the charts for average height 14 month olds). He is hitting all his developmental milestones on target for average height kids. He will hopefully be walking by Halloween! He is getting so close! They were wonderful. I think they would have sat and chatted with us all day if we wanted them to! I was very pleased with the appointment!
We left the appointment and hopped in the car to visit our friends Sarah, Brian and Tessa who live in Annapolis. (Tessa is 3 1/2 months older than Max and also and achon). Well, this is the second EVENT of the trip! We were driving down the freeway just about to leave the City of Baltimore when my mom said (about people who were standing up on the overpass) "those kids are throwing (and the second she said the word ) rocks!", we were covered in shards of glass! They had hit my windshield with 2 rocks and left 2 major areas of cracks and splintered glass. It was amazing how much glass was on the dash and all over us and into the back seats. Max was rear facing in his car seat and had glass on his head, his clothes and his feet!! Luckily, he was asleep so he didn't try to pick any of it up. Well, we had to pull over and 2 other cars pulled over too. All in all, they had gotten 6 vehicles. We ended up on the side of the freeway for a little over an hour waiting for the police (the County Police showed up and turfed it to the State Trooper who then turfed it to the City Police who just didn't bother to show up at all!). The real kicker though was that the last few cars that got hit, were hit about 20-25 minutes after us!!!! I don't think the police ever went up to that overpass to check things out! Thank goodness there were not tragic outcomes that day, but there could have been.
On Tuesday morning, we saw Dr. Ain (ortho). (Tessa also had an appointment that morning, so we go to visit again :-) Max had x-rays done and he stood up like a big boy for them! Dr. Ain said everything looks great at this point. His kyphosis is mild, very flexible and goes away with standing and bearing weight. His lower legs are as bowed as he would expect in a 14 month old achon. He still doesn't recommend Max sitting for too long if his back is hunching over but, Max is so active, he rarely sits in one spot for long at all. He will see us back in 6 months. After that, we saw Dr. Ahn (neurosurgery) and he had no concerns about Max. His head circumference is fine and he has no concerning neurologic signs. :-)
So, we headed back to the hotel to gather up our stuff and to GET A NEW WINDSHIELD (!!) and we were on our way back home. I made it home by about 9:30pm and was so excited to see Aiden, Emmi and Eric. We will head back up there in 6 months. By then, Max will be running!
Anyways, we had our appointment with Dr. Hoover- Fong (genetics) on Monday and she said he is doing great!! He is about 50th percentile for height and weight for achondroplasia (the physicians assistant said if he stays on that percentile, he will be around 4 ft 4 in. That is taller than we were anticipating. I know a lot can change but, 1 inch can change a lot with how easy it is to interact in your environment.) His head circumference is still quite small for achondroplasia (although it is at the very top of the charts for average height 14 month olds). He is hitting all his developmental milestones on target for average height kids. He will hopefully be walking by Halloween! He is getting so close! They were wonderful. I think they would have sat and chatted with us all day if we wanted them to! I was very pleased with the appointment!
We left the appointment and hopped in the car to visit our friends Sarah, Brian and Tessa who live in Annapolis. (Tessa is 3 1/2 months older than Max and also and achon). Well, this is the second EVENT of the trip! We were driving down the freeway just about to leave the City of Baltimore when my mom said (about people who were standing up on the overpass) "those kids are throwing (and the second she said the word ) rocks!", we were covered in shards of glass! They had hit my windshield with 2 rocks and left 2 major areas of cracks and splintered glass. It was amazing how much glass was on the dash and all over us and into the back seats. Max was rear facing in his car seat and had glass on his head, his clothes and his feet!! Luckily, he was asleep so he didn't try to pick any of it up. Well, we had to pull over and 2 other cars pulled over too. All in all, they had gotten 6 vehicles. We ended up on the side of the freeway for a little over an hour waiting for the police (the County Police showed up and turfed it to the State Trooper who then turfed it to the City Police who just didn't bother to show up at all!). The real kicker though was that the last few cars that got hit, were hit about 20-25 minutes after us!!!! I don't think the police ever went up to that overpass to check things out! Thank goodness there were not tragic outcomes that day, but there could have been.
On Tuesday morning, we saw Dr. Ain (ortho). (Tessa also had an appointment that morning, so we go to visit again :-) Max had x-rays done and he stood up like a big boy for them! Dr. Ain said everything looks great at this point. His kyphosis is mild, very flexible and goes away with standing and bearing weight. His lower legs are as bowed as he would expect in a 14 month old achon. He still doesn't recommend Max sitting for too long if his back is hunching over but, Max is so active, he rarely sits in one spot for long at all. He will see us back in 6 months. After that, we saw Dr. Ahn (neurosurgery) and he had no concerns about Max. His head circumference is fine and he has no concerning neurologic signs. :-)
So, we headed back to the hotel to gather up our stuff and to GET A NEW WINDSHIELD (!!) and we were on our way back home. I made it home by about 9:30pm and was so excited to see Aiden, Emmi and Eric. We will head back up there in 6 months. By then, Max will be running!
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