Another blogging momma (RK; Braska Bear) has put questions on her website that I would love to write about because I believe in blogging!
What has the DS blog community meant to you? What lessons have you learned? How did they encourage you? What are some of your favorite stories?
First of all we need to go back almost two years. Colin and I learned that Tommy might have Down syndrome during week 20 of our pregnancy. At that point I started to educate myself about what Down syndrome meant. How we could raise this baby. Much of that education was found on the internet thru the blogs that people maintained. I learned what Ds meant to families.
Fast forward to after he was born and the blogs continued to help us. We have had one of the "worse first year of life" that a kiddo with Down syndrome can have (if you are in the running for this award currently, let me know because I would LOVE to share with you some of what has kept us going). Hirschsprung's Disease added ontop really was tough. Add to that the AV canal repair in the heart. Tommy (and us) have spent 1/3 of his life in the hospital. We became very isolated that year and the blogging community was our only connection for many dreary hospital stays. I'm happy to say that Tommy and Liam are now 14 months old and much of the 'fight for life' is over. We have fought soooo hard for this guy! And when I read blogs (daily) from other families I understand that many of us are in similar medical situations and it helps me know that our family is not alone.
I find that most of the emotional support we receive comes from people posting thoughts, advice, comments on our blog and others. It's not so much the blogs themselves but often times the conversations that they start.
One site in particular, Braska Bear, is a little girl whom we would never have met under other circumstances (distance between us is a biggie). But having the blogs and noticing how similar she was to Tommy has been a wonderful source of information and knowledge. The conversations that her mom starts about medical care for Braska are wonderful and I read the comments from other dads and moms.
Closer to home, the blogs of Cooper, Dylan, and Max give me everyday inspiration, ideas, and the sense that my emotions (and ANY emotions) are okay. Those blogs encourage me and my husband to keep on keepin' on!
And talk about similarities in blogs, the Shamptons and the Wegs both have twins with one gorgeous kiddo having Ds. Both of their twins are older than ours and give us a window to a life in the future.
My favorite stories are of my own kids and the ability to go back thru our blog and see where we have been, how scarey some days were, how joyous (absolute miracles) other days were, and the pictures! Other stories that I enjoy are the hilarious ones on blogs..... Max not going to sleep, the Gillig poopy stories or dog w/skunk combo, and the Howards videos of Cooper dancing.
The beauty of blogging is if you don't feel like writing for a week, don't. If you feel like writing five times in one day, do it. If you are so sad and want a pick me up, look for some funny stories.
Friday, February 8
Thursday, February 7
More to drink?
Daddy took me to the feeding therapist yesterday. And guess what? I'm doing so good with my oral eating that my swallowing is looking good. So I'm going to try REALLY hard to drink my evening milk from my nosey cup instead of it going into my Gtube. Hmmm. I'm not sure if this is going to work to good because I'm so tired before bedtime. Mommy and I spent alot of time last night drinking from that cup and only 2 ounces needed to go into my Gtube. Not bad at all!
We had spaghetti for dinner and mommy helped me drink 2 oz then. Then I played for awhile, enjoyed my bath, and then she helped me with another 5 oz right before bed. I didn't drink all of that, in fact my pj's had a good oz on them... but I only needed the last 2 oz thru my tummy tube.
Liam was nice enough to try and help mommy a bunch of times while she was helping me drink. He ran off with bottle of milk that mommy was using to pour into my nosey cup. Mommy doesn't put a lid on the bottle because she uses the thickner and needs to stir the milk. So Liam wasted a bunch of milk. And the ThickIt wasn't working as well as mommy hoped (milk has enzymes that change the consistency with ThickIt) so we probably used a half gallon of milk just to try to get me to drink the 5 oz. She was laughing and so was I!
I hope tonight's effort is as fun ;)
We had spaghetti for dinner and mommy helped me drink 2 oz then. Then I played for awhile, enjoyed my bath, and then she helped me with another 5 oz right before bed. I didn't drink all of that, in fact my pj's had a good oz on them... but I only needed the last 2 oz thru my tummy tube.
Liam was nice enough to try and help mommy a bunch of times while she was helping me drink. He ran off with bottle of milk that mommy was using to pour into my nosey cup. Mommy doesn't put a lid on the bottle because she uses the thickner and needs to stir the milk. So Liam wasted a bunch of milk. And the ThickIt wasn't working as well as mommy hoped (milk has enzymes that change the consistency with ThickIt) so we probably used a half gallon of milk just to try to get me to drink the 5 oz. She was laughing and so was I!
I hope tonight's effort is as fun ;)
Wednesday, February 6
Tears and lots of them
For the past year I have focused on getting Tommy well. Literally keeping my son alive. First the colon surgery. Then colitis. Then open heart surgery. Then a gtube and ear tubes. Now that Tommy is better and fairly healthy, I now have been overcome with emotions related to him having Down syndrome.
At playgroup on Monday, Tommy had an early feeding therapy appt at 10:30. Just going to the appointment, being at the center, being around other kids with Ds all cemented the reality that Tommy has Down syndrome. At that moment all my emotions came forward.
It sounds strange that after a year I'm finally noticing he has Ds. And it's not that simple of an emotion. I'm sad thinking about how our communities still don't include people with disabilities and sad to hear people say they are "sorry" when they meet Tommy. . I'm sad thinking about the future for Tommy if Colin and I aren't around. The saddness overcomes me at times. And Monday it hit be like a freight train. I cried. And cried. Our feeding therapist was very sensitive as was all of the Center staff.
Watching Tommy is like seeing a baby enjoy the world with pure joy. There is no competition. No milestones to achieve at certain dates. He is always happy, content, and loves to play with things that are soft. I say that because his smile keeps me going even on the saddest of days.
A friend at work shared this scripture with me: "So the last will be first, and the first will be last." Matthew 20: 16. In Heaven he will be first in line and all of us "so called perfect" folks will have to wait!
At playgroup on Monday, Tommy had an early feeding therapy appt at 10:30. Just going to the appointment, being at the center, being around other kids with Ds all cemented the reality that Tommy has Down syndrome. At that moment all my emotions came forward.
It sounds strange that after a year I'm finally noticing he has Ds. And it's not that simple of an emotion. I'm sad thinking about how our communities still don't include people with disabilities and sad to hear people say they are "sorry" when they meet Tommy. . I'm sad thinking about the future for Tommy if Colin and I aren't around. The saddness overcomes me at times. And Monday it hit be like a freight train. I cried. And cried. Our feeding therapist was very sensitive as was all of the Center staff.
Watching Tommy is like seeing a baby enjoy the world with pure joy. There is no competition. No milestones to achieve at certain dates. He is always happy, content, and loves to play with things that are soft. I say that because his smile keeps me going even on the saddest of days.
A friend at work shared this scripture with me: "So the last will be first, and the first will be last." Matthew 20: 16. In Heaven he will be first in line and all of us "so called perfect" folks will have to wait!
Saturday, February 2
Great grades
Nate and Hannah received their report cards today and they were spectacular! Nate did very well in his first semester of 7th grade and has some wonderful teacher comments.
Hannah's 8th grade first semester was a 3.9gpa and her comments from teachers brought a tear to my eye, really, really nice comments. Here she is with her report card and HUGE smile.
More sunshine
Here is our wagon ride to the barn to see our chickens and goats. Liam really enjoys looking at the wheels of the wagon. Mommy sat me on the prickly hay and I really didn't mind it too much.
The goats and chickens were waiting to say hello at the end of our wagon ride. I said hello to all of our farm animals. They enjoyed the sunshine today too!
A little bit of sunshine...
And a lot smiles. I got outside today! Mom bundled me and Liam up and we got to play outside. Big brother Nate even took us for a wagon ride to see the barn, goats and chickens. The fresh air made me happy!
Here I am in my jumparoo out on the front porch. Notice the cool hat? I love it. My neighbor Nora made me and Liam matching hats out of her beautiful Alpaca yarns. Her family raises Alpacas. Thank you Nora for the soft, warm and beautiful hats.
Mom put me in the swing and I IMMEDIATELY grabbed the swing ropes. Gee whiz mom this thing needs more security for me. Cousin Andrew outgrew this and we REALLY like it.
Here is Liam watching daddy and Hannah hook up the horse trailer. Never a dull moment on our lil' farm.
Big picture for Liam....why?? He is wearing shoes! At 13 months we finally put a pair on him.
Here I am in my jumparoo out on the front porch. Notice the cool hat? I love it. My neighbor Nora made me and Liam matching hats out of her beautiful Alpaca yarns. Her family raises Alpacas. Thank you Nora for the soft, warm and beautiful hats.Mom put me in the swing and I IMMEDIATELY grabbed the swing ropes. Gee whiz mom this thing needs more security for me. Cousin Andrew outgrew this and we REALLY like it.
Here is Liam watching daddy and Hannah hook up the horse trailer. Never a dull moment on our lil' farm.
Big picture for Liam....why?? He is wearing shoes! At 13 months we finally put a pair on him.
Occupational therapy
I enjoyed one of the best OT appts ever! Mommy and the therapist tried different "spio" tshirts and unitards on me. What is SPIO clothing? Well, it just might help me feel more stable with my muscles and then I might wanna move a bit more.
Here's their technical info: SPIO (Stabilizing Pressure Input Orthosis) are made from a Lycra-like blend material that provides deep pressure through compression to improve positional limb and body awareness, core muscle and joint stabilization, and increase precision of muscle activation and movement.http://www.spioworks.com/Page.aspx?nid=2
After mommy figured out it's just the tshirt that I need.... the therapist and I worked on my smooth moves from a sitting position into a crawl. I didn't mind too much and did it a few times. Then I went from a crawling position back to a sit by myself (I love doing that because I feel so much better sitting).
Whew! We weren't done yet though. E the therapist put my VERY favorite strand of beads (gee whiz I love those beads) into a container with blocks. I pulled them out of the container and put them back into the container. Same with the blocks! Mommy was impressed.
Not done yet! With mommy's help I showed E how I stand. Mommy (or daddy) have to hold onto my hips for stability, and I love to stand up and get a better view on the world.
Okay, now for the grand finale... E hooked up the big platform swing. E sat on the swing, I sat on her lap and we swung gently back on forth with my body in different positions so I could work on feeling my vestibular system differently. I liked that big huge swing.
OT was great this week!
Here's their technical info: SPIO (Stabilizing Pressure Input Orthosis) are made from a Lycra-like blend material that provides deep pressure through compression to improve positional limb and body awareness, core muscle and joint stabilization, and increase precision of muscle activation and movement.http://www.spioworks.com/Page.aspx?nid=2
After mommy figured out it's just the tshirt that I need.... the therapist and I worked on my smooth moves from a sitting position into a crawl. I didn't mind too much and did it a few times. Then I went from a crawling position back to a sit by myself (I love doing that because I feel so much better sitting).
Whew! We weren't done yet though. E the therapist put my VERY favorite strand of beads (gee whiz I love those beads) into a container with blocks. I pulled them out of the container and put them back into the container. Same with the blocks! Mommy was impressed.
Not done yet! With mommy's help I showed E how I stand. Mommy (or daddy) have to hold onto my hips for stability, and I love to stand up and get a better view on the world.
Okay, now for the grand finale... E hooked up the big platform swing. E sat on the swing, I sat on her lap and we swung gently back on forth with my body in different positions so I could work on feeling my vestibular system differently. I liked that big huge swing.
OT was great this week!
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