Sunday, July 28, 2013

Unexpected news

       
        This past week was like any other week with Jude. A few doctor visits and smiles. The appointments were follow ups and we created plans to keep Jude healthy. Wednesday night, I grabbed the mail and headed inside. The first piece of mail I opened up was from the Cleveland Clinic. Inside the envelope was a summary from Jude's genetics appointment. As I started reviewing the summary, I found some shocking news. When Jude had his chromosome array done in April they found he had three chromosome gains/losses. We were told that one was 15q24 microdeletion and the other two did not have any known disease causing gene. As I am reading the summary from our visit,
 it states that Jude has 15q24 microdeletion syndrome, a gain of 15q26.3 which does not have any
known disease causing genes, and a gain of 3p26.3. The gain from 3p26.3 comes the CNTN4 gene. A gain or loss of the CNTN4 gene is found in people with autism spectrum disorder. I was upset. It seems like unpleasant and shocking news about my sweet Jude keeps popping up.  All I could think was one more thing for Jude to face...but like everyone who has read my blog knows...Jude will do a fabulous job of keeping a smile on his face and being the best he can be!

Monday, July 22, 2013

Jude's July


      July has been a busy month. The week after Jude's testing he got his helmet, had his 6 month vaccinations which caused him to have a fever of 102.1, and we found out his left airways were swollen because he had a bacteria infection. He started on an antibiotic to clear up the infection and  breathing treatments to help his airways. Needless to say, between the breathing treatment, medications, helmet cleaning, and the mandatory daily bath because of his helmet...bedtime has become quite the process! Jude has more follow up appointments to further discuss what we do since he is obviously prone to getting sick. Let's just say, this fall and winter ... during flu season ... Jude will be living in a bubble! :)
      On a lighter note, tomorrow Jude will be seven months. That is absolutely amazing to me. At one point in my life, that would of been an eternity and now it seems like a quick snapshot in time. The other day, I sat and looked at pictures of Jude from the moment he was born until now. He has changed and grown so much. His therapist and I have seen a lot of improvement, especially once he started feeling better. He is using his forearms to hold himself up during tummy time, reaching for toys, and even sitting in the stroller seat instead of the car seat! He has become so animated and funny. He laughs hysterically when I jump or make faces...sometimes I catch him laughing so hard and I don't know why and I end up shaking with laughter on the floor. Every time I look at him he flashes an adorable smile that makes every part of me melt. He is so full of love and life and I am so proud of him!