Friday, April 6, 2007

Grab a bowl of popcorn and a comfy chair! I have a feeling this is going to be a long one! Let me remind you that there are TERRIFIC nurses. The pain service that has been taking care of Gavin has meds to be given when he is fussy, because he needs them occasionally after being on them so long and now being taken off them. They keep giving this info to the nurses. I ran into a mom that I met at Saint Mary's hospital this week. She was here for an appointment for herself and amazingly we bumped into each other in this huge place! God's timing is perfect, isn't it?! Anyway, she told me that she has gone through withdrawals when being taken off narcotics, as Gavin is. She said it was horrible! She felt anxious, jittery and exhausted, but unable to sleep. This gave me a mental picture of what Gavin is going through. Not a good picture, but I'm thankful to see more clearly what he's going through. Now I know that I need to be a good advocate for Gavin, more than ever! Let me just give you another 'picture': Gavin is on 30 mcg of Ativan and off Morphine now. He was at one time on 220 mcg of each! They usually put babies on 30-40 of each after a surgery and this suffices. Not for Gavin! So, he was on a lot for a long time! Of course he's going to have these troubles coming off from them! Poor little guy! It breaks my heart! He really is doing well considering! I'm so proud of him!

Speaking of being proud, his Physical Therapist said he was impressed with Gavin's progress! He said that Gavin had a long way to go, but that considering how long he was down, he was doing very well! He said the most helpful thing that can be done for Gavin is to hold him and bounce him around like you do with most babies. This helps the most with developing these skills. I can do this easily! He also said that it will be harder for Gavin, because he has Down Syndrome. He said just having this, besides all the other issues Gavin has, is difficult for him to develop. He gave me an example of how it feels to have Down Syndrome. He said, "You know how you feel after being up real late or before you come down with an illness (exhausted and blah), this is how it feels for people with Down Syndrome all the time! So, it takes more effort and gumption to want to get ahead. He said it's a good thing that these kids seem to have a lot of feistyness, because it helps them in the long run. All I'm thinking is "Oh Boy! We're in for a long road ahead! Gavin will be feisty due to having Down Syndrome, red hair and have you met his brothers?!" I'm up for the challenge though! But, be forewarned, I may need to vent a lot in the future! Thank you God for our wonderful support system!

Thanks again for listening! You are such a blessing to our family!

Love, Alicia

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