Monday, May 17, 2010

Lots of Stuff to Talk About

This morning the fence people were supposed to come by 8am, yet 8am came and went with nobody showing up. Ben had been going back and forth about possibly taking the day off because it was raining and they didn't have a ton of work to do along with the fact that his allergies have started to act up. So he stayed home today which made my day easier since Zak could stay home with him and not have to come to Hopkins with me. He finally got a hold of the fence people and they did show up around 9:30am to start working. While we were hanging around the house this morning the boys decided to ride their bikes in the kitchen since it was raining outside.

I took a few pictures of VZ and Batman also...

Right before Ryder and I left the house the boys
also played on their scooters in the kitchen
Ryder and I left the house around 9:30am to go to story time at the library and then head to his therapy class. This story time is run by Ryder's teachers which is why we try to go there. Ryder didn't seem very interested in the stories or theme for today (knights) so we left story time early. The library was on their last day of the big book sale which means you could fill up a grocery bag for $2. Ryder and I spent a good amount of time looking around the room and left with 2 stuffed bags with books and movies.

The movies I got: Mad Money, Sex & The City Movie, No Reservations, Dark Water, Stuart Little 2, Mickeys House of Mouse Villains, Valiant, The Berenstain Bears Christmas Tree, Playtime Signs (Signing Time Series), and 3 different The Wubbulous World of Dr.Seuss Movies

The books I got: 2 Tom Clancy books for Ben, Corduroy, Just Me & My Dad (Mercer Mayer), Curious George at the fire station, Clifford Takes a Trip, Panda Bear Panda Bear What Do You See?, Zachary's Ball (about a boy named Zachary and his baseball), and some educational teaching books

After we left the library we went to Ryder's therapy class which went much better than the last time, but he was still a little "off". We went through the drive-thru at Burger King for lunch (dropped some off at the house for Zak & Ben) and then headed to Hopkins for Ryder's Genetics appointment. We were taken back to the exam room pretty quickly, but then sat for a while waiting to see anybody. As always, the Resident came in to get history since his last appointment, do a hands-on exam, and discuss any concerns I had right now about Ryder. After he was done his initial exam he went to speak with Dr.Hamosh and then they both came back to the room.

I love Dr.Hamosh and always seem to have good appointments with her even if I usually leave having more questions than answers, but I have learned that is normal when dealing with genetics! She did a hands-on exam and asked a few more questions. Then she had Ryder run up and down the hallway so she could see how steady he is on his feet, had him jump up and down, and stand on one foot. She then sat and stared at him while in deep thought for a few minutes. She said that she feels like she should have a diagnosis for him, but it just isn't there yet. She said maybe as he gets older his "odd" facial features might become more apparent and something will jump out at her. She still really feels he has more than the Klinefelter's so she is really trying to focus on the possibility of it being more than one diagnosis which of course doesn't make things easier. She said that his most recent MRI did show lesions around his ventricles, but that they were small and were not concerning to her. She suggests we do another MRI in 2 years to see if the lesions change at all or earlier if he has any new symptoms. She agrees with the Immunologist that Ryder should have a swallow study so I will be getting a phone call with that date and time. She also wants him to have a sweat test (which Zak had at 6 months old and came back negative) because he has so many of the common symptoms or red flags for Cystic Fibrosis (CF) such as low weight, slow weight gain, issues with pneumonia and sinus infections, and diarrhea. I am hopeful it will come back negative just as Zak's did, but we will see what comes of it. I will also get a call about that date and time. This test is also very easy and not invasive. They attach a little capsule-type thing to his skin with sticky stuff and then have me let him run around so he will sweat. They then take the capsule off and test his sweat for certain things which can diagnosis or rule-out CF. She then said if both the swallow study and sweat test come back negative she would like to schedule a test for Ciliary Dyskinesia (this is a link with lots of information so don't really read into it too much). We are hoping all three tests will be negative of course. We plan to go back to see Dr.Hamosh in 6 months just like normal. I will update when ever we have the tests scheduled or results.

Ryder and I finally made it home around 5:30pm. Ben made chocolate chip pancakes for dinner since I have been craving them for a few days! The fence people were still here working, but pretty much finished tonight. They do have to come back tomorrow for a few little things though.

I wanted to share a video of each of the boys riding their bikes this morning. Zak has really gotten good at pedaling the bike on flat surfaces now!

video

video

I did get a call today from the person at the school about Ryder's IEP meeting date and time, but I couldn't answer since we were with the geneticist at the time. She left a message and sure enough they have changed his meeting date! I am going to call her back tomorrow and beg & plead for it not to change because now I have no clue what to do with the boys!

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