I had so many ideas for today's "What works for us" but I finally decided to write about something that happens daily for us and that is good childcare. It continues to be a place that tugs my heart, I really want to be the one that cares for our four kids. But, on the days that both Colin and I work, we have been blessed by the most incredible and fantastic childcare, Promise. They know how to care for the boys more than any of our family members. They love our boys and are amazing in their thoughtfulness and communication. Here is a note from this last week for Tommy:
"Tommy had a wonderful week at Promise. He is getting more adventurous with his movement and is trying very hard everyday to take steps. We are still working with him to make his core stronger as well as making sure he has toys available that he can lean on and push around the room. Our Fall Festival went great. Thanks for the cookie donation they were delicious. Both of your boys got to help Miss Sherri make homemade applesauce which we ate for lunch the very same day! As you have noticed we have been spending less and less time outside which means that we are working twice as hard to keep the kids entertained. Be prepared for more art projects and cleaner clothes!"
Thanks to all of our great teachers at Promise! You are what works for us. We love you guys.
Wednesday, November 12
Monday, November 10
Feeling a little better
After developmental therapy today, mom said some vitamin D would be good for me. She gave me a nebulizer treatment and then outside we went. I think she was right. It's either that, or the vitamin 'fun'. Liam and I walked our cars to the end of our driveway and back at least three times (mom lost count). For Liam, that's no big deal. But for me it's really good. 
Sunday, November 9
Super twin powers
Something apparent lately to me during therapies is how much the boys problem solve together. One holds the bucket so the other can take things out; one arranges the couch cushion off the couch so the other can climb up, if one is sad there is always a hand from the other rubbing his head, etc. Most notably, they talk some type of jibber-jabber (twin speak) and seem to be happy with the meaning of it. Their smiles seem to mean they understand.
They don't use sign language to talk to each other, rather their sign language is only directed to Mom and Dad or Hannah and Nate. But through their wonderful teachers at Promise and our speech therapist, we will soon get the boys using words. Super twin powers will continue, but hopefully so will "words" and more signs.
Congestion
After a two month absence from any pulmonary care, Tommy is back on his albeuterol and pulmicort treatments every 4 hours. His congestion from a common cold caused at 1am nebulizer treatment last night. Poor guy just gets so wheezy from a sniffle.
Thursday, November 6
"What works for us" Wednesday
Prenatal (and postnatal) diagnosis is a very tender subject for families. I'm not posting about pro-life or pro-choice so don't get all anxious on me. But I am posting about information. Data and resources is "What works for us". We received a prenatal diagnosis and we did read and learn alot after that 20th week diagnosis.
Recently Congress passed legislation to ensure that pregnant women receiving a positive prenatal test result and parents receiving a postnatal diagnosis will be more likely to receive up-to-date, scientific information about life expectancy, clinical course, intellectual and functional development, and prenatal and postnatal treatment options . It offers referrals to support services such as hotlines, Web sites, information clearinghouses, adoption registries, and parent support networks and programs specific to Down syndrome and other prenatally diagnosed conditions. http://www.ndss.org/images/stories/NDSSresources/pdfs/kb_press_release.doc
Tommy and Liam were born 12/12/2006, so I wanted to post data here about what happened in Washington state that year. During 2006 in the State of Washington, there were 86,845 babies born. Only 77 of those babies have a diagnosis of Down syndrome. That is only 9/10ths of 1% ( .0008866) were born with Ds.
Many, many more than that were prenataly diagnosed. A 2002 literature review of elective abortion rates found that 91–93% of pregnancies in the United States with a diagnosis of Down syndrome were terminated.
Interesting other facts for 2006 (State of Washington) are the number of babies born with Hirschsprung Disease, 9. Less than 1/10th of 1% (.0001036) were born with a diagnosis of HD. Although that is not a prenatal diagnosis, I thought it interesting enough to post here because I would love to learn from other HD families in Wa State!
Extremely interesting was the fact that in 2006 there were only two births in all of Washington State that had one or both babies born with Ds. Both were in Whatcom County. One is us (of course), and the other set are the most beautiful (and active) girls you will *ever* meet.
I was never aware of how many families in the US (and abroad) are welcoming kids with Ds or other developmental diagnosis. Here is Reece's Rainbow website again http://www.reecesrainbow.com/angeltree2008.htm. There are so many families in the United States welcoming adoption *and foster care* of children with Down syndrome and any developmental disorder.
A few inspiring folks (both are must reads):
http://www.hidden-worlds.com/judithscott/
http://www.karengaffneyfoundation.com
It's been almost two years since the twins were born. "What works for us" during the prenatal diagnosis was information (and lots of faith).
Recently Congress passed legislation to ensure that pregnant women receiving a positive prenatal test result and parents receiving a postnatal diagnosis will be more likely to receive up-to-date, scientific information about life expectancy, clinical course, intellectual and functional development, and prenatal and postnatal treatment options . It offers referrals to support services such as hotlines, Web sites, information clearinghouses, adoption registries, and parent support networks and programs specific to Down syndrome and other prenatally diagnosed conditions. http://www.ndss.org/images/stories/NDSSresources/pdfs/kb_press_release.doc
Tommy and Liam were born 12/12/2006, so I wanted to post data here about what happened in Washington state that year. During 2006 in the State of Washington, there were 86,845 babies born. Only 77 of those babies have a diagnosis of Down syndrome. That is only 9/10ths of 1% ( .0008866) were born with Ds.
Many, many more than that were prenataly diagnosed. A 2002 literature review of elective abortion rates found that 91–93% of pregnancies in the United States with a diagnosis of Down syndrome were terminated.
Interesting other facts for 2006 (State of Washington) are the number of babies born with Hirschsprung Disease, 9. Less than 1/10th of 1% (.0001036) were born with a diagnosis of HD. Although that is not a prenatal diagnosis, I thought it interesting enough to post here because I would love to learn from other HD families in Wa State!
Extremely interesting was the fact that in 2006 there were only two births in all of Washington State that had one or both babies born with Ds. Both were in Whatcom County. One is us (of course), and the other set are the most beautiful (and active) girls you will *ever* meet.
I was never aware of how many families in the US (and abroad) are welcoming kids with Ds or other developmental diagnosis. Here is Reece's Rainbow website again http://www.reecesrainbow.com/angeltree2008.htm. There are so many families in the United States welcoming adoption *and foster care* of children with Down syndrome and any developmental disorder.
A few inspiring folks (both are must reads):
http://www.hidden-worlds.com/judithscott/
http://www.karengaffneyfoundation.com
It's been almost two years since the twins were born. "What works for us" during the prenatal diagnosis was information (and lots of faith).
Tuesday, November 4
Liam's sedated Baer hearing test
Daddy and Liam are at Children's right now figuring out with the nursing staff 'if' Liam is healthy enough for the Baer testing and sedation. We will keep you posted! Mommy and I are still in Bellingham today, it's hard not to be with them. Please keep Liam in your prayers this morning for a safe test and conclusive results in regards to what levels he can hear.
**Update, 9:45 Daddy called and Liam is safely sedated and the test is being done. Praise God! Finally, we will be able to understand what little brother can hear and rule out hearing loss (or rule in).
According to daddy, the nurse listened to Liam's chest, wiped his nose and decided that there was no 'junk' that he could aspirate on while sedated.
He is asleep now, hooked up to an oxygen saturation reader and a blood pressure cuff. The nurse will stay with him throughout the BAER test.
The test should take 45 mins to 1 hour. The results are immediate.
Basically, the way daddy explained it, the dr sends tones through his ears and the probes that are attached to his head give readouts of when that sound reaches his brain.
Thank you for all the prayers! A little 28 pound boy who doesn't talk yet... is hearing your prayers.
**Update 12:30 Liam is awake, eating and drinking and smiling according to a very relieved daddy. The test results show that he has wonderful hearing levels, all within normal ranges. Which, surprises me, but I am so thankful. He can hear at all the appropriate ranges!
Thanks to everyone for thinking of Liam today. It means alot. We have speech therapy for Tommy at 3pm and am anxious to tell the therapist (who also sees Liam) the results.
**Update, 9:45 Daddy called and Liam is safely sedated and the test is being done. Praise God! Finally, we will be able to understand what little brother can hear and rule out hearing loss (or rule in).
According to daddy, the nurse listened to Liam's chest, wiped his nose and decided that there was no 'junk' that he could aspirate on while sedated.
He is asleep now, hooked up to an oxygen saturation reader and a blood pressure cuff. The nurse will stay with him throughout the BAER test.
The test should take 45 mins to 1 hour. The results are immediate.
Basically, the way daddy explained it, the dr sends tones through his ears and the probes that are attached to his head give readouts of when that sound reaches his brain.
Thank you for all the prayers! A little 28 pound boy who doesn't talk yet... is hearing your prayers.
**Update 12:30 Liam is awake, eating and drinking and smiling according to a very relieved daddy. The test results show that he has wonderful hearing levels, all within normal ranges. Which, surprises me, but I am so thankful. He can hear at all the appropriate ranges!
Thanks to everyone for thinking of Liam today. It means alot. We have speech therapy for Tommy at 3pm and am anxious to tell the therapist (who also sees Liam) the results.
Saturday, November 1
Reece's Rainbow Angel Tree Project
The Angel Tree is an amazingly wonderful Christmas gift idea. I get little teary eyed looking at all their sweet faces. What a terrific gift idea!
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