First I will start with the GI results...there really weren't any. They did not find anything unexpected; there were some abnormalities in structure, but nothing to help us solve his vomiting issue. As I mentioned before, I will likely have to pursue a neuro exam, but until it happens again I have put this issue to rest.
Secondly, his walking hasn't changed much from 6 weeks ago. He will take a few independent steps here and there, mostly at PT. He gets very upset when you try and slip your fingers out from his grip. He has had a cold since April 2nd, followed by a double ear infection a couple of weeks ago. We had a really hard time getting rid of the infection and had to resort to antibiotic injections in his legs for 3 days in a row. It was not fun as you can imagine by Day 3 he knew what was coming the minute we parked at the clinic. The worst part is that these shots didn't even clear up the issue entirely. He has been a very miserable kid and we can tell something just isn't right. FINALLY, last Friday after a few conversations with others, it dawned on me that he probably has fluid in his ears (his second set of tubes fell out a while ago) and this is likely the cause of his discomfort. We got into ENT today, and we are scheduled for tube surgery next Wednesday. I hope this makes a difference for him.
He had his annual vision appointment last week and there were no changes which is great news. His vision is a guess at this point since he cannot yet verbalize what he sees, but based on their assessment his vision is about 20/40-60. Just as a side note, if your vision is 20/200, you are considered legally blind.
Both Dakota and Dallas are winding down their school years and I think we are all excited for some warm weather and maybe some relaxation. :) Dakota starts Kindergarten next year, and Dallas will continue next year at the Deaf/Hard of Hearing Program in Burnsville.
We are very excited that this summer we will be attending our first CHARGE Conference. Dallas will get to play and interact with many kids that also have CHARGE. We think it will be a good experience for Dakota as well, to see other families that have children like Dallas. There are numerous speakers and seminars that we are excited about and hope to come home with a lot of new information! The conference is in July.
Also, this summer we are hosting a fundraiser for CHARGE Syndrome. The fundraiser will take place on Saturday, August 24th at Dugarels in Hastings. The purpose of this fundraiser is to raise AWARENESS about CHARGE Syndrome. The proceeds will go to Spare Key, The CHARGE Syndrome Foundation, and The MN Deafblind Project. All of these groups have helped us tremendously over the last 3 years and we want to give back. More information on the fundraiser can be found at
http://chargeitforcharge.eventbrite.com/.
I am starting a sign language course next week through Inver Hills Community College. I am nervous and wondering how I will have time to study, etc. I hope that motivation finds me as I know this is necessary for me and my family. The course is a month long and should I LOVE it, I may pursue a degree/certificate in this field. Dallas is signing more and more, and many of those who don't see him often are lost when they see him now. His communication is taking off, which is exciting, but also scary as we don't want to be lost as his signing continues to advance.
Finally, a little note about the youngest member of our family....Dawson. This kid is so happy and a little chubby! He eats, sleeps, and smiles. His sister adores him and loves to be right in his space. Dallas still doesn't acknowledge him too much. He loves to roll, jump, sit, and chat. Thank goodness he is easy going and goes with the flow...because there is no flow around here, everyday is different!
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| Saying Goodnight |
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| Dakota and Dawson |
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At Chucky Cheese, usually not a pizza eater and if he is, it's usually cut up
but he was screaming at me so I just handed it to him and he ate it right up! |
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| Day 2 of shots in the legs |
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| Sitting |
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| What's up Doc? |
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| Chocolate cupcake and his End of Year Picnic |
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| Obsessed with Mickey |
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| Wrestling |
