Very early after Tommy's birth, we were approached by staff to participate in research studies at Seattle Children's in a voluntary effort to hopefully better understand and diagnose some of the medical struggles that Tommy endures. You can type the word "research" into our blog's upper right hand search field and see what studies we are involved with.
We've never sought out research studies. All are voluntary. As Tommy's parents, we only ask that blood draws be collected with other normally scheduled blood draws so he has no additional pain or discomfort.
Tommy can't say if he wants to be involved with this research, but after talking to family and friends and prayers, we felt that Tommy would want other kids with Down syndrome to have better medical procedures and science behind care.
So recently we were recontacted by a study for AV Canal defects. The Genetic Association Study for Copy Number Variation and Endocardial Cushion Defects. The researchs at Seattle Children's want to learn more about the genetic cause of the AV Canal defect. They want to find why some children are born with this heart problem. It might be a genetic factor. No research has yet asked and answered this question for Endocardial Cushion Defect.
We believe God made Tommy perfectly. That part is easy for us to understand. We can look at any of our kids and see God's work at hand in each of them as a gift.
So, it's hard to describe, but we also believe God wants the doctors to have their best talent and knowledge to care for his medical needs. We wouldn't change Down syndrome. But we would want to help alleviate the pain from Hirschsprung's Disease, open heart surgery and the ongoing immune deficiency of Polysaccaride Antibody Deficiency.
For this specific AV Canal defect study, Colin and I both gave saliva samples years ago. And Tommy had given saliva also, but this time they needed to collect a blood sample which would be permanently stored for data. They sent a 'kit' blood draw to our Pediatrician and we went to one of the very few kit blood draw labs in our county. This blood draw was coordinated with an annual blood draw that our Pediatrician also wanted to recheck thyroid and cbc, etc.
The kit was then driven by us to the airport and given to those nice Fedex folks to fly back to Children's. Tommy is one of 300 people with Down syndrome or a heart defect or in Tommy's case both, in the study! We hope this study is successful in it's goals and produces new knowledge in this heart defect.
Tuesday, November 15
Friday, November 4
Buddy Walk 2011
Sharing da' love
I visited a new family with a very tiny and cute baby that happened to be born with Ds.
For the past few years I've volunteered for Parent to Parent and Down syndrome Outreach of Whatcom County. And for the past few years I've had the absolute pleasure of meeting new families.
Well over a dozen in the past twelve months alone. Some new to Whatcom county. Some with newborns born here. Beautiful families with the most beautiful babies.
I feel kind of selfish about this volunteering though. See, I get so much more out of it then I think the families that I meet do. Hearing their experiences, meeting their beautiful babies and helping them with any questions, means so much to me. I feel like I get so much more out of our friendships and sharing our similar paths than the new families get out of me.
But this meeting with the family was a bit different.
Baby was sick and being carefully cared for in the hospital by his amazing mommy. It was different too because I brought my daughter Hannah with me.
See, her "culminating senior high school project" is on social support systems for families with a child with Down syndrome. And the effect that has on families. We were between a series of appointments for Hannah and I had taken a half day from work for all those medical appts. But we had a few minutes to swing by the Arc and pick up the "New Parent Bag" full of Ds books, calendars, blanky and hat. Then up to meet this gorgeous new baby and tell the parents congratulations.
Hannah learned a bit about sharing your heart with another family.
Volunteering.
How a servant's heart is always refilled and overflowing.
For the past few years I've volunteered for Parent to Parent and Down syndrome Outreach of Whatcom County. And for the past few years I've had the absolute pleasure of meeting new families.
Well over a dozen in the past twelve months alone. Some new to Whatcom county. Some with newborns born here. Beautiful families with the most beautiful babies.
I feel kind of selfish about this volunteering though. See, I get so much more out of it then I think the families that I meet do. Hearing their experiences, meeting their beautiful babies and helping them with any questions, means so much to me. I feel like I get so much more out of our friendships and sharing our similar paths than the new families get out of me.
But this meeting with the family was a bit different.
Baby was sick and being carefully cared for in the hospital by his amazing mommy. It was different too because I brought my daughter Hannah with me.
See, her "culminating senior high school project" is on social support systems for families with a child with Down syndrome. And the effect that has on families. We were between a series of appointments for Hannah and I had taken a half day from work for all those medical appts. But we had a few minutes to swing by the Arc and pick up the "New Parent Bag" full of Ds books, calendars, blanky and hat. Then up to meet this gorgeous new baby and tell the parents congratulations.
Hannah learned a bit about sharing your heart with another family.
Volunteering.
How a servant's heart is always refilled and overflowing.
Monday, October 31
My heart is many miles away
It's no secret that I'm in love with a few babies in orphanages in the Ukraine and Russia. I see their faces on Reece's Rainbow, fall in love with the shape of their eyes and melt into those pictures. Knowing their hearts and bodies are trapped in a place of no love. Knowing the joy and blessing of raising our son with Down syndrome and not understanding why so many are orphans.
I pray for orphans daily. Praying for comfort when they feel lonely. Praying for food to appear when they are hungry. Praying for someone to walk by their crib and pick up that child and love on them.
But praying is only one way I'm going to help them.
After reading this mom's wonderful story of adoption: http://www.nogreaterjoymom.com/2011/10/three-moms-with-six-angels.html It's even heavier on my heart to help.
So I'm sending Reece's rainbow a message that I'd like to raise money this Christmas season for this boy:
http://reecesrainbow.org/4106/nicholas-25ha in hopes that perhaps a family will find him and the monies raised will ease their way to adopt him. I stare at his sweet face daily and pray for him.
See at his age he will soon be transferred to an insane asylum where he will not make it much longer fending for food and probably fighting off other people. What a sweet chubby cheeked boy who should be playing in the yard with rocks and finding snakes or snuggled up on mommy's lap reading a bedtime book and being asked if he has brushed his teeth yet.
I'll put a linky up soon if you would like to send something his way at Reece's rainbow.
I pray for orphans daily. Praying for comfort when they feel lonely. Praying for food to appear when they are hungry. Praying for someone to walk by their crib and pick up that child and love on them.
But praying is only one way I'm going to help them.
After reading this mom's wonderful story of adoption: http://www.nogreaterjoymom.com/2011/10/three-moms-with-six-angels.html It's even heavier on my heart to help.
So I'm sending Reece's rainbow a message that I'd like to raise money this Christmas season for this boy:
http://reecesrainbow.org/4106/nicholas-25ha in hopes that perhaps a family will find him and the monies raised will ease their way to adopt him. I stare at his sweet face daily and pray for him.
See at his age he will soon be transferred to an insane asylum where he will not make it much longer fending for food and probably fighting off other people. What a sweet chubby cheeked boy who should be playing in the yard with rocks and finding snakes or snuggled up on mommy's lap reading a bedtime book and being asked if he has brushed his teeth yet.
I'll put a linky up soon if you would like to send something his way at Reece's rainbow.
Sunday, October 16
A new shopping experience
So this post is totally about me.
And being cheap.
So, you've got to be interested in both of those topics right?
I was at Fred Meyers yesterday looking at a new pair of shoes that I could wear to work. Kinda dressy meets casual. This was a definate 'need' for me. I work in accounting so my feet aren't really seen by many, but my current few pairs were looking pretty sad. And my favorite pair had a hole in it, not cool. So I found a pair for about $40. They weren't really anything exciting, a suede pair of clog like keds that looked fairly nice. I was pressed for time and needed to go pick Hannah up for work so I thought I would "think about the purchase" and passed on buying them that moment.
Hannah said she had two hours to spend with me in between her work meeting and her actual shift at the DQ. So off we went to Value Village. Our VV is in a new spot and HUGE. We had plenty of time to find that pair of shoes there, right? Well, I did spend the $40, actually almost a dollar less than what that single pair of shoes was going to cost and I purchased:
Next stop was the Christian bookstore to get Hannah a new devotional and I was excited that she found two that met her interests. So at the checkout I mentioned that I had their recent coupons in my email, but forgot to print the coupons (and they are 25% off good ones). They asked for the codes off my email, which I found thru my phone, and wa-lah we got he whole purchase for $13. Two great books for daily inspiration and a walk closer to God for an affordable price.
And being cheap.
So, you've got to be interested in both of those topics right?
I was at Fred Meyers yesterday looking at a new pair of shoes that I could wear to work. Kinda dressy meets casual. This was a definate 'need' for me. I work in accounting so my feet aren't really seen by many, but my current few pairs were looking pretty sad. And my favorite pair had a hole in it, not cool. So I found a pair for about $40. They weren't really anything exciting, a suede pair of clog like keds that looked fairly nice. I was pressed for time and needed to go pick Hannah up for work so I thought I would "think about the purchase" and passed on buying them that moment.
Hannah said she had two hours to spend with me in between her work meeting and her actual shift at the DQ. So off we went to Value Village. Our VV is in a new spot and HUGE. We had plenty of time to find that pair of shoes there, right? Well, I did spend the $40, actually almost a dollar less than what that single pair of shoes was going to cost and I purchased:
- A pair of black naturalizer shoes that look adorable and fit great, no 'wear' on them
- Pair of brown soft cotton pants that kinda look like dressy colored jeans
- Floral top that is so cute, blue
- Yellow stretch shirt with three quarter arm length (I'll wear a camisole or sweater shell under)
- Pair of khaki pants for Liam
- Blue polor shirt for Liam
- Yoga capri pants for me (gym bag is already in van for week)
- Boardgame for Liam and I (trouble, teaches colors/counting/ turn taking) no pieces missing
Next stop was the Christian bookstore to get Hannah a new devotional and I was excited that she found two that met her interests. So at the checkout I mentioned that I had their recent coupons in my email, but forgot to print the coupons (and they are 25% off good ones). They asked for the codes off my email, which I found thru my phone, and wa-lah we got he whole purchase for $13. Two great books for daily inspiration and a walk closer to God for an affordable price.
Renewal
Our family has always felt that a closeness to God didn't necessarily mean church attendance. Daily devotions and prayer happen anywhere. Yesterday Hannah read the daily devotion in our van while I was driving and we discussed. But worship, obviously, is best in fellowship with many people. But for awhile we have struggled because Tommy's needs and Hannah's interests weren't really being supported in the a way that we felt drew them closest to God while at church. Sparked them. Showed God's love in every action. So today we visited another church with a friend. The children's church program had many, many kids with Down syndrome in it which was an eye opener and made my heart feel so good. Plus there were kids with all types of special needs receiving accomodations so they could learn the word of God easier. The sermon that Hannah, our friend and I attended was amazing. It. blew. me. away. The sermon was on guilt. And how we carry it around as baggage and it distances us from friends, spouses and God. The pastor mentioned AA support for sobriety and the fifth step and talked about topics that hit so close to home. Don't get me wrong though, our pastor at our church is amazing also and our family has such a connection with him. It's just all the other pieces of hearing God's messages weren't really reaching a few of us so we wanted to try something new.
The only drawback to the new church was that they lost Tommy. Literally. They have a fancy huge tracking system for kids, tags, electronic tracking and all. But they lost him. I checked Liam and Tommy into a preschool room, talked to the teachers and explained Tommy is a nonverbal gypsy runner. They felt confident they could watch Tommy and met his needs. I was 'encouraged' to attend the sermon. Read that asked to leave and had hovered a bit too long, ha ha.
After service, I told Hannah and her friend, we've gotta make a bee-line back to the children's room thru all the hundreds (thousand?) of church goers to grab the boys. When I got to the room I had dropped them off in, there was a mom who said they were across the hall in a larger group to eat and worship. My stomach fell. I just knew Tommy would be lost in the shuffle. And sure enough with two exits to that room and all the kids, plus teachers, plus parents coming and going. No. Tommy. None. Glanced around the room and saw Liam playing but no Tommy. Asked both teachers and each one pointed to the same area of the room, that's where we last saw him. Hannah and I have a "glance" that means, you grab the kid you got and I'll run for the other twin. And I ran. Pushing past people and heading to the front of this new church to what I remembered with the glass doors that led to the parking lot. Dry heaving. Tears and all. Geez, I'm such a crier. And there, which seemed like 5 mins to get to it. Was a dad standing with a VICE grip on Tommy and a smile on his face. I just knew this lil guy needed someone and all his darting around meant he was looking. Heavy sigh. Tommy was fine. Marched Tommy back to the preschool room where he showed some glimmer of remorse (hands over his face) and told the teachers I had found him at the front of the church. Out of nowhere came another teacher who said she worked with special needs kids for the church and welcomed us to come to a different service where his needs could be more better addressed. ugh. That sounded great. Now I'm getting a gps system even quicker than I've ever said before.
So. All four kids, plus two teen friends and us are going to pick apples and make caramel apples this afternoon. And I'm going to soak up the fun and sunshine and remember that God is good. All our needs are met, and a few of our wants, and this is such a perfect day.
The only drawback to the new church was that they lost Tommy. Literally. They have a fancy huge tracking system for kids, tags, electronic tracking and all. But they lost him. I checked Liam and Tommy into a preschool room, talked to the teachers and explained Tommy is a nonverbal gypsy runner. They felt confident they could watch Tommy and met his needs. I was 'encouraged' to attend the sermon. Read that asked to leave and had hovered a bit too long, ha ha.
After service, I told Hannah and her friend, we've gotta make a bee-line back to the children's room thru all the hundreds (thousand?) of church goers to grab the boys. When I got to the room I had dropped them off in, there was a mom who said they were across the hall in a larger group to eat and worship. My stomach fell. I just knew Tommy would be lost in the shuffle. And sure enough with two exits to that room and all the kids, plus teachers, plus parents coming and going. No. Tommy. None. Glanced around the room and saw Liam playing but no Tommy. Asked both teachers and each one pointed to the same area of the room, that's where we last saw him. Hannah and I have a "glance" that means, you grab the kid you got and I'll run for the other twin. And I ran. Pushing past people and heading to the front of this new church to what I remembered with the glass doors that led to the parking lot. Dry heaving. Tears and all. Geez, I'm such a crier. And there, which seemed like 5 mins to get to it. Was a dad standing with a VICE grip on Tommy and a smile on his face. I just knew this lil guy needed someone and all his darting around meant he was looking. Heavy sigh. Tommy was fine. Marched Tommy back to the preschool room where he showed some glimmer of remorse (hands over his face) and told the teachers I had found him at the front of the church. Out of nowhere came another teacher who said she worked with special needs kids for the church and welcomed us to come to a different service where his needs could be more better addressed. ugh. That sounded great. Now I'm getting a gps system even quicker than I've ever said before.
So. All four kids, plus two teen friends and us are going to pick apples and make caramel apples this afternoon. And I'm going to soak up the fun and sunshine and remember that God is good. All our needs are met, and a few of our wants, and this is such a perfect day.
Thursday, September 29
Down syndrome awareness month
Since October is Down syndrome awareness month I thought I would repost the video we made last year of Tommy's growth and abilities. He continues to grow and change everyday in the most amazing ways.
http://tommyupdate.blogspot.com/2010/09/tommy-story-at-onetruemediacom.html
Also attached here is a video from someone else's blog (whom I adore) of her two munchkins. Be sure to read her 'back story' on her blog.
http://pudgeandzippy.blogspot.com/2011/09/appropriate.html
To everyone that already knows how wonderful EVERY human life is, thanks! And to those of you still learning of Down syndrome, ask questions I'm right here!
http://tommyupdate.blogspot.com/2010/09/tommy-story-at-onetruemediacom.html
Also attached here is a video from someone else's blog (whom I adore) of her two munchkins. Be sure to read her 'back story' on her blog.
http://pudgeandzippy.blogspot.com/2011/09/appropriate.html
To everyone that already knows how wonderful EVERY human life is, thanks! And to those of you still learning of Down syndrome, ask questions I'm right here!
Tuesday, September 20
Buddy Walk time!
Join Tommy at this year's Down syndrome Buddy Walk in Bellingham on Saturday October 1. Have fun while helping fund programs for people with Down syndrome.
http://www.arcwhatcom.org/BuddyWalk.html
http://www.arcwhatcom.org/BuddyWalk.html
Thursday, August 25
Heavy heart
It's hard to watch your children struggle.
Being a mom for over 17 years now I've watched all four of my kids struggle at times.
Sometimes it's a struggle acquiring a new skill. Hannah learning horse back riding, Nate long distance bicycling and falling sometimes in dangerous scary ways, Tommy struggling with simply orally drinking, Liam struggled to ride a bike.
All of them struggled for awhile, but their will, their persistance, their hearts and faith led them to success and they were able to acheive what they originally set out to do.
I needed to, often, step in to help for a bit, but then step away. They learned best with my support but by themselves.
On Sunday I left my struggling daughter at a place that is suppose to try and help her. To find a cure for the disease that has begun to consume her. Hannah is in the beginning stages of alcoholism. A disease, although genetic and hereditary, is a choice of the heart and the staff will support her in learning to beat this struggle, but in the end, all of us will step aside as Hannah learns to stand alone and beat this.
Forever, Hannah will be faced with her disease. Forever, she and our family will be changed. We are choosing hope. We are placing our worries and anxieties about the process in a God that loves Hannah more than anyone else.
Hannah is trying her best. But would love prayers! Specifically about learning how to choose her own lifetime over alcohol. I'll see her on Saturday and any posts here or on facebook, I'll give to her in a card. Much love to all of you!
Being a mom for over 17 years now I've watched all four of my kids struggle at times.
Sometimes it's a struggle acquiring a new skill. Hannah learning horse back riding, Nate long distance bicycling and falling sometimes in dangerous scary ways, Tommy struggling with simply orally drinking, Liam struggled to ride a bike.
All of them struggled for awhile, but their will, their persistance, their hearts and faith led them to success and they were able to acheive what they originally set out to do.
I needed to, often, step in to help for a bit, but then step away. They learned best with my support but by themselves.
On Sunday I left my struggling daughter at a place that is suppose to try and help her. To find a cure for the disease that has begun to consume her. Hannah is in the beginning stages of alcoholism. A disease, although genetic and hereditary, is a choice of the heart and the staff will support her in learning to beat this struggle, but in the end, all of us will step aside as Hannah learns to stand alone and beat this.
Forever, Hannah will be faced with her disease. Forever, she and our family will be changed. We are choosing hope. We are placing our worries and anxieties about the process in a God that loves Hannah more than anyone else.
Hannah is trying her best. But would love prayers! Specifically about learning how to choose her own lifetime over alcohol. I'll see her on Saturday and any posts here or on facebook, I'll give to her in a card. Much love to all of you!
Monday, August 15
Montana 2011
Caution
Picture overload!
Here is the highlights of our Montana 2011 family vacation
I won't subtitle anything, but in general we had the six of our family, plus two extra WONDERFUL teenage friends
Plus two cousins
A wonderful uncle Marty and his girlfriend Jenny
A sweet Grandma and a wonderful uncle Bruce
Almost ten full days of 80-85 degree weather
Lots of wakeboarding, waterskiing, kneeboarding by Nate
Major soul searching event for all of us
Two fun loving four year old twins who were constant energy
Hannah enjoying all things sunshine related
A cabin which holds 10 years of our small family's memories and summer adventures and over 40 years for my husband!
Colin and I appreciating God's beautiful creations both in nature and in our four kids
Tuesday, August 9
Family vacation to Montana
Soon you will see too many pictures of our trip to Montana.
Trust me, you will be tired of sunshine, waterskiing, bonfires, teenagers, yummy dinners, five empty bottles of sunscreen (seriously), aqua shoes, fresh coffee beside the lake watching the sunrise, live theatre in Big Fork, buffalo burgers, carrot sticks with hummus, kicking soccer balls with the twins, long conversations about meaningful life events, naked twins running wild, late night movies to escape mosquitos, big sky sunsets and stargazing for hours.
Okay, you won't be TIRED, you will want to go to Montana.
Stay tuned!
Trust me, you will be tired of sunshine, waterskiing, bonfires, teenagers, yummy dinners, five empty bottles of sunscreen (seriously), aqua shoes, fresh coffee beside the lake watching the sunrise, live theatre in Big Fork, buffalo burgers, carrot sticks with hummus, kicking soccer balls with the twins, long conversations about meaningful life events, naked twins running wild, late night movies to escape mosquitos, big sky sunsets and stargazing for hours.
Okay, you won't be TIRED, you will want to go to Montana.
Stay tuned!
Friday, July 22
Improving Care for Children with Complex Needs
So, awhile back I told you Tommy and I were selected to be in a pilot study at our local Children's Hospital to help improve care for children with complex needs.
And I was really excited.
And as I was sending back all the signed forms and consents, and after I told Tommy about it, I was secretly hoping we would be randomized into the intervention group.
Not the control group. Because nothing fun happens in the control group.
And so I was tickled when I opened my email today and received word from the pilot study folks at Children's:
Dear Ms. McMillan,
Welcome to the Improving Care for Children with Complex Needs study! Thank you for returning your completed consent and enrollment materials to us.
You and your child’s primary care provider, Dr. Mara Kelley, have been assigned to the intervention group, which means that you will participate in the Comprehensive Case Management Service (CCMS) program at Seattle Children’s Hospital.
Within the next week, a scheduler from Seattle Children’s will call you to schedule your first CCMS clinic visit. After your child’s visit is scheduled, a member of the CCMS Clinic Team will call you to gather some information about you and your child prior to your first clinic visit and will answer any questions that you might have about the program. At your child’s first visit, the CCMS team of doctors, nurses, and case managers will work with you to create a shared care plan for your child.
Woo Hoot! We are in the intervention group and will receive the comprehensive shared care planning we have always hoped and prayed for.... the same planning that is lacking here in our county.
Since I'm involved in our local Taking Action Group for Strenthening Services to children with special healthcare needs in Whatcom County, I've kept them in the loop of this pilot too. Who knows, maybe when Seattle Children's is working with our local pediatrician and immunologist... good things will start to happen and improve locally.
Prepare yourself Tommy. This means being treated to FAO schwartz toys while in Seattle, Chinese food, and lots of your favorite ice cream cones as reward. You can do it!! Your mommy loves you enough to want to improve care for all kids with complex needs. This will be fun.
And I was really excited.
And as I was sending back all the signed forms and consents, and after I told Tommy about it, I was secretly hoping we would be randomized into the intervention group.
Not the control group. Because nothing fun happens in the control group.
And so I was tickled when I opened my email today and received word from the pilot study folks at Children's:
Dear Ms. McMillan,
Welcome to the Improving Care for Children with Complex Needs study! Thank you for returning your completed consent and enrollment materials to us.
You and your child’s primary care provider, Dr. Mara Kelley, have been assigned to the intervention group, which means that you will participate in the Comprehensive Case Management Service (CCMS) program at Seattle Children’s Hospital.
Within the next week, a scheduler from Seattle Children’s will call you to schedule your first CCMS clinic visit. After your child’s visit is scheduled, a member of the CCMS Clinic Team will call you to gather some information about you and your child prior to your first clinic visit and will answer any questions that you might have about the program. At your child’s first visit, the CCMS team of doctors, nurses, and case managers will work with you to create a shared care plan for your child.
Woo Hoot! We are in the intervention group and will receive the comprehensive shared care planning we have always hoped and prayed for.... the same planning that is lacking here in our county.
Since I'm involved in our local Taking Action Group for Strenthening Services to children with special healthcare needs in Whatcom County, I've kept them in the loop of this pilot too. Who knows, maybe when Seattle Children's is working with our local pediatrician and immunologist... good things will start to happen and improve locally.
Prepare yourself Tommy. This means being treated to FAO schwartz toys while in Seattle, Chinese food, and lots of your favorite ice cream cones as reward. You can do it!! Your mommy loves you enough to want to improve care for all kids with complex needs. This will be fun.
Thursday, July 21
G-tube
Tommy's g-tube fell out today while he was playing with Liam.
I was at work, and our sweet babysitter called to say she found his mickey tube on the floor. Oops. By the time I got home, a 30 min drive, I tried to put it back in, but within a short time the stoma had already started to close.
Now if you remember, last time this happened it was a weekend and our local ER couldn't really help us and we ended up driving to Seattle Children's to have it reinserted.
So I hesitantly called our pediatrician for advice, thinking it's a weekday and things might be better for local services. They had us go to the hospital admitting and then to the pediatric floor to meet our prior pediatrician who is now a hospitalist. We adore him. Tommy absolutely loves that man. And the feeling is mutual I think.
So when we get to the pediatric floor, of course all the nurses have to catch up on "all things Tommy" since they haven't seen us inpatient in well over a year now. That was at 2pm. We were told the dr had been paged and he already knew we were coming to meet him because our pediatrician called him for this service. We waited for the doc. And then it was 3pm. We were still waiting for the doc. And then it was 4pm. We still...were...waiting...for..the... doc.
And the room we were in started getting small. Tommy was tired of me.
And Tommy and I smelled liked vomit. Because when your g-tube comes out and your mom can't get the new one in.... she puts a red catheter in the stoma. Which leaks. It leaks stomach "stuff" out. And oh my goodness does it stink. To hold the red catheter in place while driving to the hospital, mom has wrapped a towel around your body and then packaging tape around the towel. Because the stomach "stuff" has made it difficult to tape the catheter to your body. And you stink. And your mom stinks. In fact she dry-heaved a few times. Which is about the ugliest thing a human being can do.
So it's 4pm. And it's been two hours waiting for the doctor. So I decide to take Tommy for a walk because he has decided in his boredom that his towel and packaging tape should come out. They should be ripped off. Now. And his toes, feet, hands all got involved in that effort with great immediacy.
On the walk I look down at my flip flop feet with newly painted pink toes to see stomach "stuff" all over my toes. Not much I can do about that at this point. But dry-heave again.
So we walk and look at the koi fish in the pond. And we walk thru a parking lot to get some fresh air. And then another and another.
I cruised thru the cafeteria on our way back to the pedatric unit and bought Tommy his favorite tapioca dessert as a "prize" for after he got his g-tube reinserted.
And now we are at the THREE hour wait. And then the nurse came to find us and the doctor had arrived. It's not much fun for Tommy waiting three hours looking like a sumo wrestler with a towel around your stomach, smelling like a bum and being wrapped in packaging tape is just really odd.
Of course two nurses helped plus the doctor and two lpn's asked if they could watch and learn. Right about the time I'm telling the doc that I've tried the new gtube and there are no holes in it and it takes 5 cc water.... his pager goes off. With a c-section possibility. I have to admit, for one second I thought in my head, oh please just help my son first then go to the c-section. I knew Tommy's would be quick.... and then he said the c-section was a few minutes off so he could help Tommy first. I feel really bad for thinking those thoughts now.
The procedure took all of 5 minutes as the red catheter had stretched the stoma enough for the g-tube to be slipped back in.
Tommy high fived the doc and the nurses and we took our stinky selves home. Right after he ate his tapioca in front of them. He had waited way too long not to eat that prize!
So, tomorrow we had a prescheduled meeting with our nutritionist and will definately work on the g-tube weaning plan we started a few months ago. Tommy is ready. And so am I :)
I was at work, and our sweet babysitter called to say she found his mickey tube on the floor. Oops. By the time I got home, a 30 min drive, I tried to put it back in, but within a short time the stoma had already started to close.
Now if you remember, last time this happened it was a weekend and our local ER couldn't really help us and we ended up driving to Seattle Children's to have it reinserted.
So I hesitantly called our pediatrician for advice, thinking it's a weekday and things might be better for local services. They had us go to the hospital admitting and then to the pediatric floor to meet our prior pediatrician who is now a hospitalist. We adore him. Tommy absolutely loves that man. And the feeling is mutual I think.
So when we get to the pediatric floor, of course all the nurses have to catch up on "all things Tommy" since they haven't seen us inpatient in well over a year now. That was at 2pm. We were told the dr had been paged and he already knew we were coming to meet him because our pediatrician called him for this service. We waited for the doc. And then it was 3pm. We were still waiting for the doc. And then it was 4pm. We still...were...waiting...for..the... doc.
And the room we were in started getting small. Tommy was tired of me.
And Tommy and I smelled liked vomit. Because when your g-tube comes out and your mom can't get the new one in.... she puts a red catheter in the stoma. Which leaks. It leaks stomach "stuff" out. And oh my goodness does it stink. To hold the red catheter in place while driving to the hospital, mom has wrapped a towel around your body and then packaging tape around the towel. Because the stomach "stuff" has made it difficult to tape the catheter to your body. And you stink. And your mom stinks. In fact she dry-heaved a few times. Which is about the ugliest thing a human being can do.
So it's 4pm. And it's been two hours waiting for the doctor. So I decide to take Tommy for a walk because he has decided in his boredom that his towel and packaging tape should come out. They should be ripped off. Now. And his toes, feet, hands all got involved in that effort with great immediacy.
On the walk I look down at my flip flop feet with newly painted pink toes to see stomach "stuff" all over my toes. Not much I can do about that at this point. But dry-heave again.
So we walk and look at the koi fish in the pond. And we walk thru a parking lot to get some fresh air. And then another and another.
I cruised thru the cafeteria on our way back to the pedatric unit and bought Tommy his favorite tapioca dessert as a "prize" for after he got his g-tube reinserted.
And now we are at the THREE hour wait. And then the nurse came to find us and the doctor had arrived. It's not much fun for Tommy waiting three hours looking like a sumo wrestler with a towel around your stomach, smelling like a bum and being wrapped in packaging tape is just really odd.
Of course two nurses helped plus the doctor and two lpn's asked if they could watch and learn. Right about the time I'm telling the doc that I've tried the new gtube and there are no holes in it and it takes 5 cc water.... his pager goes off. With a c-section possibility. I have to admit, for one second I thought in my head, oh please just help my son first then go to the c-section. I knew Tommy's would be quick.... and then he said the c-section was a few minutes off so he could help Tommy first. I feel really bad for thinking those thoughts now.
The procedure took all of 5 minutes as the red catheter had stretched the stoma enough for the g-tube to be slipped back in.
Tommy high fived the doc and the nurses and we took our stinky selves home. Right after he ate his tapioca in front of them. He had waited way too long not to eat that prize!
So, tomorrow we had a prescheduled meeting with our nutritionist and will definately work on the g-tube weaning plan we started a few months ago. Tommy is ready. And so am I :)
Wednesday, July 20
Grange hall talk
We've been keeping busy lately. Our family was invited to talk at the Snohomish County Grange meeting and thank their women's comittee for making blankets for new babies born with Down syndrome in Whatcom County. My parents are in Snohomish County which made this connection great. So we drove down to Granville grange in Granite Falls and met with the folks there to talk about Down syndrome awareness, support and to say thanks for the blankets!
I thought to share my speaking notes with all of you as a way to update what our local DsO is doing. Each DsO is a bit different in outreach, New Parent support and activities for everyone. And I love reading on blogs what each of you are doing within your local area support systems. So I'll share my speech with all of you. The questions that followed the speech were interesting, most people seemed to want to know what types of Ds there are, and to mention how their own family member with Ds lived a full rich life. It was a wonderful day and really enjoyed having my family there to support Tommy and people with Down syndrome in general. Hannah has chosen her culminating senior High School project to be on family support systems for people with Down syndrome. So I'm sure her speech will be a highlight next June!
Speaking notes from July 16:
I’d like to thank you so much for the invitation to come today to talk. Thank you to Jan, The Horseshoe Grange, and all the women who made the blankets for newborns with Down syndrome. What a terrific project and we are so thankful.
First I’d like to introduce myself, I’m Sandi McMillan, married to Colin, mom to four active kids (age 17 down to 4 ½), daughter to Bill and Sue Pepperell and a sister to Debbie and Tami. I’m a mom first, farmer by choice and accountant by day. To tell you a little of our story, our last two children are twins born the twelfth day of the twelfth month and 12 minutes apart! We did have a prenatal diagnosis for probable Down syndrome but soon learned after Tommy was born that he had multiple diagnosis and needed immediate medical interventions. He was born with Hirschsprung’s disease and required surgery to remove 1/3 of his colin. He also was born with a complete AV canal heart defect and required open heart surgery at 6 months old. Tommy has a g-tube which is a feeding tube in his tummy for thin liquids. He also is moderately immune compromised with a condition called Polysaccaride Deficiency Syndrome.
Since Tommy’s birth, my husband Colin and our teenagers, have been volunteers and advocates for people with Down syndrome. We began volunteering at “Down syndrome Outreach of Whatcom County” in 2007 by fundraising in our first Buddy Walk which is the nationally known fundraising walk for local areas to raise awareness for Down syndrome. We quickly turned the interest in advocacy into hundreds of hours volunteering over the past four years serving in our DsO.
One of the first projects in our DsO was to create a brochure for newly diagnosed parents, so there could be accurate information given to new parents. We learned that most new parents didn’t have a prenatal diagnosis and no time to prepare by looking for facts. We met with the manager at our local labor and delivery and hand delivered our factual brochures and explained the DsO services for outreach to new parents.
The brochure highlighted facts such as 350,000 people in the US have Ds, it’s the single most common genetic disorder. About 80% of children with Ds are born to moms under the age of 35. All people with Down syndrome have some level of intellectual disability, which can be mild to severe. Most are somewhere in between. Children with Down syndrome look more like their families than they do one another. They have a beautiful full range of emotions, attitudes, are creative and imaginative in play and pranks and grow up to live independent lives with varying levels of support.
Down syndrome will not be the most interesting thing about Tommy as he grows up. Remember we share much in common with you as a parent, raising children fills your life with unimaginable delights and difficulties.
Today, people with Down syndrome are achieving advances in healthcare and increased opportunities in education. With support, many move out of the family home, take care of themselves, hold jobs and live full rich lives.
We thought the brochure was great, but wanted to give parents more than just a piece of paper to read. Colin and I knew first-hand what it was like to feel supported by other families with older children with Ds when Tommy was first born. We had the great privilege of meeting the Weg, Gillig, Howard and Johnson families early and were very supported.
In wanting something more than just the brochure, we worked with our DsO to create a New Parent bag filled with resources, a blanket, a toy. Our DsO volunteers are creative and made a beautiful bag with yellow and blue colors on a butterfly as the symbol outside the bag. We found a developmental calendar at Band of Angels that allowed families to place a milestone sticker in whatever month the child achieved that success. Even if walking came at age 3 or 4. The first year of the New Parent Bags my mom Sue and my aunt Elizabeth made the majority of the blankets that went to new babies. One of the DsO volunteers Bill also donated blankets. Last year, we were grateful to the Horseshoe Grange for making beautiful blankets that were given to new babies. The blankets, as a piece of the New Parent bag, make a big impact to new families. The feel others are thinking of them and we are congratulating them on a new baby! Other items in the new parent bag include the DsO brochure, National Down syndrome brochure, Arc and P2P information.
The New parent bag is wonderful, and even better is the long lasting connection that a parent makes with a helping parent that has an older child with Ds. An instant support and resource is made between the new parent and the helping parent that delivers the bag.
Our Down syndrome Outreach, as a program of the Arc of Whatcom County, has an event each month. We would love to invite all of you to events to see how people with Down syndrome lead full and rich lives.
Again, thanks for making the blankets for DsO of Whatcom County.
I thought to share my speaking notes with all of you as a way to update what our local DsO is doing. Each DsO is a bit different in outreach, New Parent support and activities for everyone. And I love reading on blogs what each of you are doing within your local area support systems. So I'll share my speech with all of you. The questions that followed the speech were interesting, most people seemed to want to know what types of Ds there are, and to mention how their own family member with Ds lived a full rich life. It was a wonderful day and really enjoyed having my family there to support Tommy and people with Down syndrome in general. Hannah has chosen her culminating senior High School project to be on family support systems for people with Down syndrome. So I'm sure her speech will be a highlight next June!
Speaking notes from July 16:
I’d like to thank you so much for the invitation to come today to talk. Thank you to Jan, The Horseshoe Grange, and all the women who made the blankets for newborns with Down syndrome. What a terrific project and we are so thankful.
First I’d like to introduce myself, I’m Sandi McMillan, married to Colin, mom to four active kids (age 17 down to 4 ½), daughter to Bill and Sue Pepperell and a sister to Debbie and Tami. I’m a mom first, farmer by choice and accountant by day. To tell you a little of our story, our last two children are twins born the twelfth day of the twelfth month and 12 minutes apart! We did have a prenatal diagnosis for probable Down syndrome but soon learned after Tommy was born that he had multiple diagnosis and needed immediate medical interventions. He was born with Hirschsprung’s disease and required surgery to remove 1/3 of his colin. He also was born with a complete AV canal heart defect and required open heart surgery at 6 months old. Tommy has a g-tube which is a feeding tube in his tummy for thin liquids. He also is moderately immune compromised with a condition called Polysaccaride Deficiency Syndrome.
Since Tommy’s birth, my husband Colin and our teenagers, have been volunteers and advocates for people with Down syndrome. We began volunteering at “Down syndrome Outreach of Whatcom County” in 2007 by fundraising in our first Buddy Walk which is the nationally known fundraising walk for local areas to raise awareness for Down syndrome. We quickly turned the interest in advocacy into hundreds of hours volunteering over the past four years serving in our DsO.
One of the first projects in our DsO was to create a brochure for newly diagnosed parents, so there could be accurate information given to new parents. We learned that most new parents didn’t have a prenatal diagnosis and no time to prepare by looking for facts. We met with the manager at our local labor and delivery and hand delivered our factual brochures and explained the DsO services for outreach to new parents.
The brochure highlighted facts such as 350,000 people in the US have Ds, it’s the single most common genetic disorder. About 80% of children with Ds are born to moms under the age of 35. All people with Down syndrome have some level of intellectual disability, which can be mild to severe. Most are somewhere in between. Children with Down syndrome look more like their families than they do one another. They have a beautiful full range of emotions, attitudes, are creative and imaginative in play and pranks and grow up to live independent lives with varying levels of support.
Down syndrome will not be the most interesting thing about Tommy as he grows up. Remember we share much in common with you as a parent, raising children fills your life with unimaginable delights and difficulties.
Today, people with Down syndrome are achieving advances in healthcare and increased opportunities in education. With support, many move out of the family home, take care of themselves, hold jobs and live full rich lives.
We thought the brochure was great, but wanted to give parents more than just a piece of paper to read. Colin and I knew first-hand what it was like to feel supported by other families with older children with Ds when Tommy was first born. We had the great privilege of meeting the Weg, Gillig, Howard and Johnson families early and were very supported.
In wanting something more than just the brochure, we worked with our DsO to create a New Parent bag filled with resources, a blanket, a toy. Our DsO volunteers are creative and made a beautiful bag with yellow and blue colors on a butterfly as the symbol outside the bag. We found a developmental calendar at Band of Angels that allowed families to place a milestone sticker in whatever month the child achieved that success. Even if walking came at age 3 or 4. The first year of the New Parent Bags my mom Sue and my aunt Elizabeth made the majority of the blankets that went to new babies. One of the DsO volunteers Bill also donated blankets. Last year, we were grateful to the Horseshoe Grange for making beautiful blankets that were given to new babies. The blankets, as a piece of the New Parent bag, make a big impact to new families. The feel others are thinking of them and we are congratulating them on a new baby! Other items in the new parent bag include the DsO brochure, National Down syndrome brochure, Arc and P2P information.
The New parent bag is wonderful, and even better is the long lasting connection that a parent makes with a helping parent that has an older child with Ds. An instant support and resource is made between the new parent and the helping parent that delivers the bag.
Our Down syndrome Outreach, as a program of the Arc of Whatcom County, has an event each month. We would love to invite all of you to events to see how people with Down syndrome lead full and rich lives.
Again, thanks for making the blankets for DsO of Whatcom County.
Thursday, July 7
Summer reading program
Our local library has an *awesome* summer reading program, so I signed up all four kids. The duo is doing the 0-5yr old fun program that tracks reading books and awards fun prizes. The teens (although they don't know this yet) will be encouraged to participate in the summer program too and theirs is all online (and amazing prizes).
Summer reading is good for the brain and you can enjoy the sunshine too.
Here's the link if you are local. Even if you are in the county, the Bellingham library can still be your 'choice', they just ask that you only participate in one program (either pick county or city). The duo got two-for-one swim passes and bus vouchers (which I've wanted to take them on) just for signing up.
http://www.bellinghampubliclibrary.org/summerreading/index.aspx
Summer reading is good for the brain and you can enjoy the sunshine too.
Here's the link if you are local. Even if you are in the county, the Bellingham library can still be your 'choice', they just ask that you only participate in one program (either pick county or city). The duo got two-for-one swim passes and bus vouchers (which I've wanted to take them on) just for signing up.
http://www.bellinghampubliclibrary.org/summerreading/index.aspx
Wednesday, July 6
Summer is finally here
We are so glad warm weather is here at last. Kids are out of school, and summer trips are already in progress. Hannah leaves for cheer camp next week, Nate is finishing up driver's ed, Tommy has recovered from a gross gtube infection and Liam has learned to ride his bike without training wheels.
We are each reading a book. And relaxing alot.
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We made Kool-Aid flavored playdough. One of the preschool summer 'homework' was OT skills of poking and especially isolating that big ol chubby index finger. So we poked playdough. And read books that are his favorite so he could point at all the monsters and excitement on the pages. He is getting there. Tommy prefers a good ol smack with the palm of his hand any day over isolating an index finger.
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Liam *loved* Max's birthday party. And I love it when Liam looks like he had a really good time. Despite his brother having repeatitive fits for the entire three hours.
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This is what wrestling looks like in the summer
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Hannah helped us at the park playground and I think she may have had just as much fun as the boys.
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This is a room full of stuff! I met with Western Washington University staff at the Ershring lending library for special education teachers. About an exciting opportunity for Tommy. I'll write more later But this place was so cool with resources and ideas and meeting Tommy just 'where' he is with communication. I'm wagging my tail with excitement.
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Hannah and Nate's beautiful great grandma turned 90 this month. My sister Deb hosted a beautiful birthday party and we were treated to a 4 generation picture of Nate, Hannah, their dad Michael, Grandma Linda and Great Grandma Ilene. Hannah has her great grandma's name as her middle name. What a fun day.
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Yes that is Nate up in the tree hammock that someone built over the beach. Too cool. Chillin'.
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I'm trying to get the duo out a little more now that we are healthy again and having some meaningful activities. So, we visited daddy at work one day. Liam loved it! So did daddy ;)
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Down syndrome outreach and Parent to Parent have put on some fun evening activities to meet more families. And of course, we have really enjoyed them!
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Last year, my sister Debbie gave me some strawberry plants. I didn't think much of them after planiting. Oh my was I surprised when the 'first picking' added up to a bowl full. We have since picked twice more and I think we will get two more pickings also. Mmmm.
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Daddy is trying to beat the rising diesel prices and got himself an adorable (I mean handsome) little scooter for commuting. Liam is totally jealous.
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Liam riding his two wheeler. In his underwear. With mud boots that are all cracked and broken. But he is riding without training wheels. Woo hoot! Loved the goofy hat too. He has such style.
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We had friends over for the fourth of July. Two lovely families. And they brought fireworks!
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Daddies putting all the fireworks together. It's just a guy thing I think.
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Enjoying backyard sunshine.
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We are each reading a book. And relaxing alot.
I know the duo looks like they are going golfing, but actually Tommy went to the dr three times in eight days for a gtube infection. Last visit finally we got what we were asking for, a nice strong antibiotic. He is so much better now! We also called our home health care place and ordered a gtube with a longer stem, cause I got to thinking.... no one has suggested a bigger gtube since he rec'd his first one.... at 10 months old. Just thinkin' that might be part of the problem with infections.
We made Kool-Aid flavored playdough. One of the preschool summer 'homework' was OT skills of poking and especially isolating that big ol chubby index finger. So we poked playdough. And read books that are his favorite so he could point at all the monsters and excitement on the pages. He is getting there. Tommy prefers a good ol smack with the palm of his hand any day over isolating an index finger.
Liam *loved* Max's birthday party. And I love it when Liam looks like he had a really good time. Despite his brother having repeatitive fits for the entire three hours.
Hannah and Nate's beautiful great grandma turned 90 this month. My sister Deb hosted a beautiful birthday party and we were treated to a 4 generation picture of Nate, Hannah, their dad Michael, Grandma Linda and Great Grandma Ilene. Hannah has her great grandma's name as her middle name. What a fun day.
Nate and I spent the day together. Packed a picinic. Went to Locust beach and as Nate puts it "chilled". It was a little cloudy. But we enjoy spending time together, especially at places hand picked by Nate which are always outdoors in nature.
Yes that is Nate up in the tree hammock that someone built over the beach. Too cool. Chillin'.
We had friends over for the fourth of July. Two lovely families. And they brought fireworks!
Enjoying backyard sunshine.
Liam loved watching the fireworks safely in my lap behind the french doors where we could see the fireworks.
Happy summer!
Saturday, June 25
Max' birthday party
We had a *blast* at our friend Max's birthday party. You can see all the cool pictures here. http://mightymaxupdate.blogspot.com/ Max's mom Amy is amazing with creative ideas and so much love and caring. We had fun!!
Mommy note: Tommy was not feeling well and SUPER grumpy grinchy grouchy. After the third dr visit last night within eight days.... we have an antibiotic and are getting better.
Happy birthday Max. We love you Sooooooo much!
Mommy note: Tommy was not feeling well and SUPER grumpy grinchy grouchy. After the third dr visit last night within eight days.... we have an antibiotic and are getting better.
Happy birthday Max. We love you Sooooooo much!
Monday, June 20
School's out
Gratitude: Give thanks in all things (Ephesians 5:20).
We made teacher thank you gifts this year for the preschool team.
There are 7 on the teaching team for 10 kids (I believe that was the final number in their morning classroom but I could be off by 1 child that may have snuck in June).
The preschool team was amazing this year again and I'll post later this week on progress for the duo and what we will be homeschooling on this summer (actually for all four kids,I'm so excited)
We started off with LOTS of sculpey clay and pens. Hmm, any ideas on what we made?
Hannah and the duo CREATING. And we talked about the year, thanking each of the teachers, talking about the special memories......and how we are already looking forward to next year!
We made pens for each teacher. We thought about colors and tried to match meaningful colors to each teacher. The yellow/black one was for our bus driver who is ever so patient with us. The green/yellow pen was for one of the staff who Liam said "she luves John Deere's like me". And the red/white one was for Tommy's nurse because it reminded us of the red cross. Tommy's wonderful one on one aide (although no one called her that) is staying home next year to care for her family and we made her a pen with red in it because..... Tommy signed the color red this year!!
I wrote them each a personal note. I used a template in Word for shipping labels and it had a beautiful scroll artwork on it and worked perfectly when printed on a sheet of paper and cut out.
I could have written an entire page of observations, gratitude, sharing and encouragement because each teacher has been such a gift to us this year and so absolutely fun everyday.
Thank you preschool team! See you all in the fall. Stay tuned this week for our progress updates and our homeschooling summer very flexible 'plan'.
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