So, you asking yourself, two posts in one month, what the heck is going on? I know, I know. It is unusual, but I wanted to share something fun. I met someone. Actually, I met two someone's! Long story, short. Quentin's new respite worker helps another mommy that has a son with CP and she connected me with Patricia, who also connected me with Shauna and now I have two new mommy friends. Exciting? YES!
We talked about everything that you might be able to imagine and more. I learned so many things that I probably should have brought a pen and pad to the play date, because of course I have forgotten half of them already. They are full of so much knowledge and have tried so many treatments and therapies that it was a little overwhelming, but very exciting at the same time. Maybe, just maybe Quentin and I will be able to benefit from making friends. I get to spend time with women that understand my day-to-day a little bit and Quentin gets new friends and maybe we will be able to try something new that we hadn't even thought about before. Win, win!
I wasn't able to bring Quentin to the meeting today because he was at school, but their kids are great. Patricia has triplets (and two older children also) that are almost three. Zach has CP and gorgeous red hair and eyelashes (fire red to be exact)...so cute, and he smiled at me a lot, so I think I may have a new friend! Shauna has three children. I got to meet Lola the baby (16 months) and she's adorable and Christian her son who is almost 3 who has CP. He is such a big boy I couldn't believe that he wasn't even 3 yet! Shauna has a wonderful blog for Christian, christiansjourney.org, which I looked at as soon as I got home, of course. Each of our stories are different, but we relate which is sometimes what is needed. Shauna brought up a good point. She said something along the lines that it's nice to be around people that aren't always looking at you with pity or worry because they think that you are sad. I think that it's just nice to sit down with a group of people that talk to you and your kiddo and aren't seeing their disability first.
On a quick side note, Quentin had another IEP meeting again at school yesterday and it went really well. They are really happy with all of his progress and have changed some of the goals to be a bit more challenging for him now. He will be working on using his hands to activate switches instead of his head now. He tolerates being in the stander more and they would like to see him eventually be able to actually bear a little weight on his feet so that we can use that for transferring him in and out of his bed, or chair, later on. We have to incorporate a good stretching and massage routine at home to help keep from developing contractures (A condition of shortening and hardening of muscles, tendons, or other tissue, often leading to deformity and rigidity of joints*Merriam-Webster*) in his hands and wrists. Also, to keep him from having pain and arthritis in his joints later on. So, I'm going to learn their routine and see if there is anything that I'm missing and really work on being more consistent with it, because it's truly more beneficial for him that way. I am always glad to hear that he is doing well and improving on his goals and it makes me happy to see him grow. Quentin will be 6 in two and a half months and I say the same thing every year. Where did the time go?
Signing off now. See you during my next moment of silence!
Tuesday, April 26, 2011
Thursday, April 14, 2011
Summer's a comin'
I just realized that I started this blog a year ago and have been the worst at keeping up with it, so I am going to commite myself to being better at getting the news about Q out to everyone on a monthly basis. I think once a month will do it seeing that not alot of things are changing for us, but who knows I might have something very profound to say on a monthly basis...so, be on the look out!
We are getting closer to the end of the school year and all I can feel is dread. Dread at the insanely hot weather that is coming (and keeps rearing it's ugly head at least once a week), and dread that we have no summer school/program options for Quentin. Not that I don't love my son, but now what? Segis is not running his video game shop out of a retail location anymore (sad, but good and a story for another time) so he will be home to help, but it's just a shame to me that Quentin will have to be home all day, every day. Did I mention that Segis isn't much of an outdoor person? Oh, and did I mention that it gets over 110 degrees here in the summer? So, needless to say even if Segis wanted to go to the park just to relax and hang out outside, our son cannot handle the heat. We went two weeks ago to the Tucson Street Fair and it was a disaster. I was so excited that we were going to be able to get out of the house as a family and go sample some of the wonderful street fair food and goodies and we lasted for 45 minutes. Not long enough to even walk the entire route of the fair. There were so many people there and Quentin's wheelchair doesn't have a source for shade anymore, although we made sure that he was well covered in clothing so that he didn't burn, it just wasn't good enough. It was at least 90 degrees outside and he was sweating profusely. He was done in the first 15 minutes, but we braved the elements for another 30 minutes while greedily eating our chips on a stick followed by the most decadent cheesecake (dipped in chocolate...I know, I know. One word. AMAZING!)also on a stick!!! What won't they think of next? I just wish that there was a program that suited my kiddo's needs so that he can see someone other than his parents for three months all day long. Maybe we'll have to get a week long trip to Grandma and Grandpa's places (that means one week with the Perry Grandparents and one week with the Jacquez Grandparents) so he can get a change of scenery. I might have to join him, because the scenery here isn't exactly what I would call inviting.
Oh, I don't want to forget that we have reached a milestone and I think that it is worth sharing, as it seems that most of what we discuss here is about Quentin's eating. He is officially 35+ pounds. I realize that we have to continue to have him gain weight, but I almost felt like baking a cake to celebrate. I mean, we have been hounded and hounded about putting Quentin on a feeding tube because they say he's too skinny, and finally our hard work and determination have paid off. He eats a lot of different foods at school that we might not try at home, but that's the great benefit of having him enrolled in school. He gets pizza (with ranch dressing, of course), burgers, and much, much more. I have yet to attempt to mush anything more than soft foods, but I love that he's getting to explore new foods and that it's helping him grow. His face is fuller and his belly too! I'm still working on the whole bottle/cup thing and I know that I'm going to have to abandon the bottle eventually, but it's about convenience and I don't know if I'm ready to let go just yet.
I just wanted to add something else about our lives that I thought was worth mentioning. We had a visit a few months back and Auntie Carol and my mom came to Tucson. It was the best time I've had in Tucson in a very long time and I am so happy that they came and spent time with all of us. We took a day trip to Tombstone and Bisbee. Tombstone was neat, but I think that one trip was enough for me. I fell in love with Bisbee, it made me feel like I was in California all over again. It is a small mining town with beautiful green trees (it snows there and was pretty cold when we took our trip) and lots of artsy shopping, small galleries and jewelry shops...adorable little town. The housing prices there also reminded me very much of California, a bit on the high side, but the houses were very unique and I loved that. We ate at our favorite breakfast place and just hung out which made me wish that they would never leave, but it was really nice to have the time with them that we did and we look forward to their next visit once the summer months have long gone.
I miss home very much and wish that I was near family and friends, but know that this is our journey and we will find our way home eventually. I hope that everyone is well and I miss you all!
We are getting closer to the end of the school year and all I can feel is dread. Dread at the insanely hot weather that is coming (and keeps rearing it's ugly head at least once a week), and dread that we have no summer school/program options for Quentin. Not that I don't love my son, but now what? Segis is not running his video game shop out of a retail location anymore (sad, but good and a story for another time) so he will be home to help, but it's just a shame to me that Quentin will have to be home all day, every day. Did I mention that Segis isn't much of an outdoor person? Oh, and did I mention that it gets over 110 degrees here in the summer? So, needless to say even if Segis wanted to go to the park just to relax and hang out outside, our son cannot handle the heat. We went two weeks ago to the Tucson Street Fair and it was a disaster. I was so excited that we were going to be able to get out of the house as a family and go sample some of the wonderful street fair food and goodies and we lasted for 45 minutes. Not long enough to even walk the entire route of the fair. There were so many people there and Quentin's wheelchair doesn't have a source for shade anymore, although we made sure that he was well covered in clothing so that he didn't burn, it just wasn't good enough. It was at least 90 degrees outside and he was sweating profusely. He was done in the first 15 minutes, but we braved the elements for another 30 minutes while greedily eating our chips on a stick followed by the most decadent cheesecake (dipped in chocolate...I know, I know. One word. AMAZING!)also on a stick!!! What won't they think of next? I just wish that there was a program that suited my kiddo's needs so that he can see someone other than his parents for three months all day long. Maybe we'll have to get a week long trip to Grandma and Grandpa's places (that means one week with the Perry Grandparents and one week with the Jacquez Grandparents) so he can get a change of scenery. I might have to join him, because the scenery here isn't exactly what I would call inviting.
Oh, I don't want to forget that we have reached a milestone and I think that it is worth sharing, as it seems that most of what we discuss here is about Quentin's eating. He is officially 35+ pounds. I realize that we have to continue to have him gain weight, but I almost felt like baking a cake to celebrate. I mean, we have been hounded and hounded about putting Quentin on a feeding tube because they say he's too skinny, and finally our hard work and determination have paid off. He eats a lot of different foods at school that we might not try at home, but that's the great benefit of having him enrolled in school. He gets pizza (with ranch dressing, of course), burgers, and much, much more. I have yet to attempt to mush anything more than soft foods, but I love that he's getting to explore new foods and that it's helping him grow. His face is fuller and his belly too! I'm still working on the whole bottle/cup thing and I know that I'm going to have to abandon the bottle eventually, but it's about convenience and I don't know if I'm ready to let go just yet.
I just wanted to add something else about our lives that I thought was worth mentioning. We had a visit a few months back and Auntie Carol and my mom came to Tucson. It was the best time I've had in Tucson in a very long time and I am so happy that they came and spent time with all of us. We took a day trip to Tombstone and Bisbee. Tombstone was neat, but I think that one trip was enough for me. I fell in love with Bisbee, it made me feel like I was in California all over again. It is a small mining town with beautiful green trees (it snows there and was pretty cold when we took our trip) and lots of artsy shopping, small galleries and jewelry shops...adorable little town. The housing prices there also reminded me very much of California, a bit on the high side, but the houses were very unique and I loved that. We ate at our favorite breakfast place and just hung out which made me wish that they would never leave, but it was really nice to have the time with them that we did and we look forward to their next visit once the summer months have long gone.
I miss home very much and wish that I was near family and friends, but know that this is our journey and we will find our way home eventually. I hope that everyone is well and I miss you all!
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