OOPS, I missed my first day. Not bad considering I've suffered with a terrible flu or cold or whatever it was for the past 7 days, and still have terrible congestion and coughing going on. Enough Excuses.
So yesterday we went to Pittsburgh for a Pulmonology appointment. We go for a visit every 6 months. The twins have been diagnosed with asthma and we usually have long rough winters dealing with colds, bronchitis, pneumonia, and lots of breathing treatments. Because of this we always start taking Singular and Flovent from October to April every year to help steer us away from breathing issues. On our way there Caleb started acting a little fussy and I was hoping he was not getting what I'm recovering from. The Doc listened to him and sure enough, he's wheezing..UGH so not only do we get to start Singular and Flovent, now we're giving albuterol treatments this week. Let's hope its just a cold and nothing else.
One thing I should have done over the past four years I wished I would have done, just to know kinda thing is record doctors visits in a log book. I know we have made more visits to Pittsburgh in the past four years that I have in my entire life. (And thats even with me going to college in Pittsburgh and coming home often) We have had more than our share of visits to Childrens Hospital. Is that because of Down Syndrome? not entirely.
That is one question people ask me all the time. Is that because of their Down Syndrome? The asthma, banging their heads with their fists all the time, swinging and chewing on socks, their picky appetites, I don't know I've lost count of what all that's been asked about. The answer is more often than not NO. Every kid with Down Syndrome is not the same as any other. The only thing that every kid with Down Syndrome has is an extra 21st chromosome. Just like other kids who have asthma don't have it just because they are typical kids. Its not a question that offends me, just kinda makes me laugh that people pair having Down Syndrome together with all the bad stuff.
My kids with Down Syndrome are more like my typical children than they are given credit for. It may take them a little longer to get to that point, but they get there. They get frustrated, they pull hair, they take toys away from each other, they laugh, they hug, they love to kiss, they have very defining personalities, they give me more joy than I could have possibly thought I was capable of at one time in my life.
Tuesday, October 13, 2009
Sunday, October 11, 2009
31 for 21 Day 11... Family
I just got word that my brother in law Jim just finished the Chicago Marathon. I am so excited for him and proud of his journey to get there. He injured his foot about three weeks ago and it was up in the air even just this week if he was going to be able to run the 26.2 miles or not. So this was an even bigger accomplishment for him to not only run that distance but to do it while in pain.
This brings me to the subject of FAMILY.
When I received the diagnosis for Caleb that he had Down Syndrome I was alone in the NICU with my sister in law Megan. She was one of the best people I could have wished to have been with when the news was delivered to me. She is often a girl of few words, but she gets her point across. She said It's no Big Deal, you can do this. And to her, I believe its truly no big deal. She has a cousin who is like a sister to her and who has a Developmental Disability of some sort. Her cousin is, I think 19, such a fun person to be around and yet still needs the scolding a four year old would need for doing something they know they shouldn't have done, she can be quite mischievous at times. Megan knows what her aunt has gone through, what the family has gone through, how her cousin has affected many peoples lives for the better. And therefore I trusted that it was No Big Deal.
I called my husband and he met me at home and I told him about the diagnosis. We cried briefly, more out of fear. Fear of the unknown, fear of how our lives were going to change, fear of what others would say, fear for our children, fear of the future. In response to the fear we dove right into research and some of that scared the tar out of us even more, but most of it did actually settled our minds a bit. That this was indeed No Big Deal.
I have to say that at first breaking the news to family was heart wrenching. Each member took the news a little different than the other. We had some family members who began crying instantly, we had some family members who said they were so sorry, we had some family members say we were good parents and we could handle anything God gave us, we had family members make us feel like this was going to be a terrible burden on us and what were we going to do... Yea, a very broad range of emotions we had to deal with along with the fact that we still had two very tiny babies in the NICU who were still needing alot of medical attention to keep them alive.
Aside from breaking the news of the diagnosis, my family was absolutely amazing. I was in the hospital for several days before the boys emergency c-section, and then stayed in a week after they were born, and then a very long 84 day NICU stay for Isaac in Pittsburgh. During all of this, Tom and I closed on a new home. My family cared for the three older children and they all pulled together and scheduled who would have the children when, who would be feeding them, getting them off to school, etc..etc..etc.. AND my mom and sisters pulled together and painted and wallpapered almost the entire house for me while the boys were in the NICU so that there would be no paint fumes to deal with when they're wee little bodies came home finally. AND my church family provided us with meals AND my Mothers of Multiples group provided us with meals AND the prayers we received were so comforting.
One of the best things about a Down Syndrome Diagnosis? Family. It pulled us together more than we could have thought. It made us realize what is important. It helped us appreciate that just being here for each other means more than a high IQ or a big pay check. It means that God does give us things at just the right moment for just the right reasons. And I know that there are many people who would not want to deal with what we do, but not having been put into the position as we were almost 4 years ago I may have thought and said the same thing. But today.. Today I thank God for his DOUBLE BLESSING on my family. We have all grown from these boys. I love my family.
What would you say is one of the Best things about a Down Syndrome Diagnosis??
This brings me to the subject of FAMILY.
When I received the diagnosis for Caleb that he had Down Syndrome I was alone in the NICU with my sister in law Megan. She was one of the best people I could have wished to have been with when the news was delivered to me. She is often a girl of few words, but she gets her point across. She said It's no Big Deal, you can do this. And to her, I believe its truly no big deal. She has a cousin who is like a sister to her and who has a Developmental Disability of some sort. Her cousin is, I think 19, such a fun person to be around and yet still needs the scolding a four year old would need for doing something they know they shouldn't have done, she can be quite mischievous at times. Megan knows what her aunt has gone through, what the family has gone through, how her cousin has affected many peoples lives for the better. And therefore I trusted that it was No Big Deal.
I called my husband and he met me at home and I told him about the diagnosis. We cried briefly, more out of fear. Fear of the unknown, fear of how our lives were going to change, fear of what others would say, fear for our children, fear of the future. In response to the fear we dove right into research and some of that scared the tar out of us even more, but most of it did actually settled our minds a bit. That this was indeed No Big Deal.
I have to say that at first breaking the news to family was heart wrenching. Each member took the news a little different than the other. We had some family members who began crying instantly, we had some family members who said they were so sorry, we had some family members say we were good parents and we could handle anything God gave us, we had family members make us feel like this was going to be a terrible burden on us and what were we going to do... Yea, a very broad range of emotions we had to deal with along with the fact that we still had two very tiny babies in the NICU who were still needing alot of medical attention to keep them alive.
Aside from breaking the news of the diagnosis, my family was absolutely amazing. I was in the hospital for several days before the boys emergency c-section, and then stayed in a week after they were born, and then a very long 84 day NICU stay for Isaac in Pittsburgh. During all of this, Tom and I closed on a new home. My family cared for the three older children and they all pulled together and scheduled who would have the children when, who would be feeding them, getting them off to school, etc..etc..etc.. AND my mom and sisters pulled together and painted and wallpapered almost the entire house for me while the boys were in the NICU so that there would be no paint fumes to deal with when they're wee little bodies came home finally. AND my church family provided us with meals AND my Mothers of Multiples group provided us with meals AND the prayers we received were so comforting.
One of the best things about a Down Syndrome Diagnosis? Family. It pulled us together more than we could have thought. It made us realize what is important. It helped us appreciate that just being here for each other means more than a high IQ or a big pay check. It means that God does give us things at just the right moment for just the right reasons. And I know that there are many people who would not want to deal with what we do, but not having been put into the position as we were almost 4 years ago I may have thought and said the same thing. But today.. Today I thank God for his DOUBLE BLESSING on my family. We have all grown from these boys. I love my family.
What would you say is one of the Best things about a Down Syndrome Diagnosis??
Saturday, October 10, 2009
31 for 21: Day Ten....A Funny
So I have been down all week with what I believe is the flu. It started on Tuesday and by Friday I could take it no longer and called the doctor to get an antibiotic. So today I'm still not feeling well and I decided to go use the twin's nebulizer and albuterol to help break up some the the chest congestion I've been enduring for the past four days. And then, the Funniest thing happened!!
I took the nebulizer into my bedroom. We live in a ranch home, my bedroom is at one end and the living room is in the middle section but kinda far away from my bedroom. I fill up the vile with the solution and get ready to sit back for a few minutes of quite time and inhale this solution into my lungs to get some relief. I turn on the machine AND I hear pitter patter pitter patter, little feet RUNNING in the direction of my bedroom. I'm confused and not sure what's going on??? Then both twins swing the door open, jump up on my bed and attack me to take away the nebulizer. I laughed so hard at them, they were so excited to hear that machine turn on and to take a few puffs of that mist. I honestly think they missed it. Every winter, they have terrible congestion. Many children with Down Syndrome have terrible congestion all winter long and my guys are part of that. Unfortunately for the boys they both have been diagnosed with asthma as well. We usually spend a lot of time with the nebulizer between the two of them, so much in fact that we have two machines here at the house. It has been quite some time since we've used one and I was seriously so amazed at their reaction. I would have thought that they would have ran the opposite direction, but NO this was a familiar sound to them and one that I think they realize brings them relief.
I am hoping this winter will be different from the rest and that we won't be needing this wonderful machine all that much, but from the reaction I got from Caleb and Isaac today I think they would miss it, not being able to wave the wand around and stick the wand into their mouth and blow out a puff of smoke. I can only hope that if we have to use this on them this winter I will get the same kind of excited reaction when its for real :)
I took the nebulizer into my bedroom. We live in a ranch home, my bedroom is at one end and the living room is in the middle section but kinda far away from my bedroom. I fill up the vile with the solution and get ready to sit back for a few minutes of quite time and inhale this solution into my lungs to get some relief. I turn on the machine AND I hear pitter patter pitter patter, little feet RUNNING in the direction of my bedroom. I'm confused and not sure what's going on??? Then both twins swing the door open, jump up on my bed and attack me to take away the nebulizer. I laughed so hard at them, they were so excited to hear that machine turn on and to take a few puffs of that mist. I honestly think they missed it. Every winter, they have terrible congestion. Many children with Down Syndrome have terrible congestion all winter long and my guys are part of that. Unfortunately for the boys they both have been diagnosed with asthma as well. We usually spend a lot of time with the nebulizer between the two of them, so much in fact that we have two machines here at the house. It has been quite some time since we've used one and I was seriously so amazed at their reaction. I would have thought that they would have ran the opposite direction, but NO this was a familiar sound to them and one that I think they realize brings them relief.
I am hoping this winter will be different from the rest and that we won't be needing this wonderful machine all that much, but from the reaction I got from Caleb and Isaac today I think they would miss it, not being able to wave the wand around and stick the wand into their mouth and blow out a puff of smoke. I can only hope that if we have to use this on them this winter I will get the same kind of excited reaction when its for real :)
31 for 21: Day Nine people with Down Syndrome have "tremendous capabilities."
Karen Gaffney DID IT!!! Read all about this VERY Inspirational story
A long, cold swim for a cause - Local News Updates - The Boston Globe
Posted using ShareThis
A long, cold swim for a cause - Local News Updates - The Boston Globe
Posted using ShareThis
Thursday, October 8, 2009
31 for 21: Day Eight ... Go Karen Go!!!!
Karen Gaffney will swim eight miles in Boston Harbor on October 8th.
Karen Gaffney is the President of a non-profit organization dedicated to championing the journey to full inclusion in families, schools, the workplace and the community for people with developmental disabilities. She is doing this by creating awareness and calling attention to the tremendous capabilities of people with disabilities. Karen accomplishes this through presentations and workshops delivered all over the country. Karen graduated from St. Mary’s Academy in Portland, Oregon and earned a two-year Associates of Science degree from Portland Community College. She successfully swam the English Channel as part of a six-person relay team. And just last year, she accomplished her biggest swimming Challenge yet… she swam 9-miles across Lake Tahoe in 59-degree water to raise money for the National Down Syndrome Congress and to show the world that people with Down Syndrome are more alike, rather than different, from everyone else. Karen travels the country speaking to a wide range of audiences about overcoming limitations and about what can be accomplished with positive expectations. Karen tackles any challenge she faces with determination and commitment, knowing she has limits, but not allowing them to limit her drive to succeed. Oh, and by the way…. Karen Gaffney has Down syndrome.
MDSC Mission Statement: To enhance on a continuous basis the lives of individuals with Down syndrome through the education and support of people with Down syndrome, their families, their friends, their teachers, and the community as a whole. To ensure individuals are valued, included, and live fulfilling lives in the community.
Our Vision: The MDSC wants to be recognized by parents, educators, people with Down syndrome, and the medical community as the preeminent organization in Massachusetts for information, networking, and advocacy for and about Down syndrome.
To visit their site Click Here
Wednesday, October 7, 2009
31 for 21: Day Seven
Last year Parenting and BabyTalk did a photo search for children with Down Syndrome to feature on their website the month of October. The response was amazing and the beauty of these children just melts your heart. Take a moment a look through a few of these and pay special attention to Round 8... That's my guys on the front :)
http://www.parenting.com/article/Baby/Health/A-Special-Joy-Babies-With-Down-Syndrome-Galleries
http://www.parenting.com/article/Baby/Health/A-Special-Joy-Babies-With-Down-Syndrome-Galleries
Tuesday, October 6, 2009
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