Twins turn four (round two of pictures)

 More pictures!  Tommy's face has scratches and a bruise from the bouncing with other kids, battle wounds!  Cake and ice cream helped.

 Cousins Andrew and Madison come helped celebrate.

 Colin and I tried to organize the birthday wishes and cake.

 Liam love the bouncy house and got so sweaty!

 We tried to get all the grandkids together, but Daphne our friend is still in the picture, so cute!

 Liam and his friend Mitchell.  I just realized I'm missing our sweet friend Max from these pictures because they came later.

 Me and Tommy, looks like I'm having more fun than Tommy.

 Cousins Owen and Andrew and our friend Lexi at the very top.  She was a daredevil.

 Daphne and her dad playing air hockey.  We have loved getting to know her family, they are very sweet and teach us a ton of sign language.

Priceless photo my sister took of Tommy first seeing the jumping houses.  Hooray for me!!!

  Lexi is having fun!

 My sister Tami is pregnant with her second little boy, due in April. 

Me and Tommy sharing a cute moment at Christmas but I had to sneak it in here. 

Two little four year olds

Tommy and Liam turned 4 years old!  Born 12 minutes apart, on the twelfth day of the twelfth month.

My mom, Grandma Sue, made incredible cakes.  I showed her Braska's elmo cake (one of our blog friends) and she got the inspiration for the cupcakes to spell their names and show their age).  Liam's cake was a racecar track complete with cars which he LOVED.  And Tommy (and his friend Max) really liked Elmo.  Thank you Gma Sue for the amazing birthday cakes!

We had the party at the Jumparound Fun zone.  Praise radio had a silent auction on their party packages to raise money for ministry.  I bid on one of the packages and won it for half of the regular price.  Woo Hoot!  We had the opportunity to invite 12 of their friends plus family.  Oh how we enjoyed seeing everyone. 

Tommy and Liam's friend Lexi wore the birthday glasses well.

Liam at home with some of his presents.  Daddy helped him build the Lego creation.  Aunt Tami made the super cool roadway and car organizer out of fabric and it's very portable.  Super cool idea!

Me and my mom had fun!  I just love her so much.

My dad, Grandpa Bill and Nate talking.  My dad is going to have open heart surgery (double bypass and repace the aeortic valve on Jan 10th, prayers are appreciated, my dad is 87 years young).

 Racecar cake for Liam

Elmo cake for Tommy

And the birthday boy Liam really enjoyed presents!

I'll post a couple pictures of the twins jumping around at the party next.....

Believe

What an incredibly fun and meaningful Christmas!

We had a snow storm... Hannah and Liam had fun making a 'snow storm' of tp.  She really wanted a white Christmas.

 We had presents, Nate enjoyed opening a special one from Grandpa Bill and Grandma Sue.

We had stockings, that were filled by santa.

And we enjoyed our sweet little Christmas tree.

 We even enjoyed one little boy eating from a spoon his favorite new dessert, cheesecake.

All six of us enjoyed Christmas eve dinner here at home, yummy lasagna.   I really wanted to go to candlelight service on Christmas eve but Colin was working and I ran low on patience.  We opened one present each that evening.  Then on Christmas morning four kids opened their presents and we all then went to Michael's house so Hannah and Nate could enjoy spending time with their dad.  He had a fabulous breakfast of french toast and sausage.  Afternoon was spent with my sister Debbie's family.  As their Christmas gift to all of us, they heated their outdoor swimming pool and had a scrumptious Christmas dinner for about 50 people.  Yummy and lots of fun seeing extended family we don't often see.  The next day, we drove to Tacoma and had a fun 'second' Christmas celebration with Grandma Dorothy, and the kids' uncles.  Liam and Tommy enjoyed opening presents this year.  I read them the Christmas story from the bible on Christms Eve and we enjoyed the meaning of such a special moment of the year.  Hope everyone enjoyed this wonderful day.

Chocolate on a stick

Mmmm. 

Warm up a mug of milk and then stir in one of these hunks of pure joy.

The dynamic duo and I made these for neighbors and friends.  We made a triple batch of homemade marshmellows and they turned out extra yummy.  Glad we had a few of just the marshmellows left over because smores on new year's sound delicious.

http://www.makeandtakes.com/hot-chocolate-on-a-stick

Encouragement

What would I say to the prospective adoptive parents and caretakers of Baby Twin Doe who remains in the hospital in another state, born just weeks ago?  I would share our story.  A story that shares alot of health similiarities to their little boy.  Our son Tommy is Twin A, and was diagnosed prenatally with probable Down syndrome and Dandy walker malformation of the brain.  Our Twin B was perfectly healthy, just like theirs was.  At twenty weeks gestation we were told Twin A may not be born.  We were told that he may only live hours or days.  What we didn't know was that he also had a complete AV canal defect of the heart, Hirschsprung's disease, polysaccaride antibody deficiency syndrome, severe sleep apnea and would need to live off of a feeding tube for a long period of time.  What we didn't know was how little ALL of that would DEFINE who he is.  He is an almost four year old boy with a bubbly personality and knows no stranger.  He is quick to smile, quick to saddness and always quick in forgiveness.  He runs, walks, climbs, hits, hugs, smiles, laughs, and cries.  He looks at books and uses sign language.  He eats.  He loves.  He has a lifetime.  He is his own self just like all of our children.

I'm not going to offer judgment for the mom that chose life for her twins thru adoption nor the parents that chose to take the healthy twin and leave the struggling one in the hospital with a DNR.  I try hard not to judge other people.  I know how hard this is.  I live this everyday.  I believe in a loving God that will comfort and provide for all the people involved in this situation.   He has a plan for all of us.

So when that state Ds coordinator called me to ask if she could share our contact information with the staff, the case workers, the prospective adopted parents, I smiled and said I would love to share the story of Tommy.  It's a good one.

Grateful

Happy Thanksgiving day tomorrow!  Lots to be grateful for this year.  Teenagers who are becoming good young adults, mostly thru trial and error, and they are both doing well!  Twin four year old boys who stayed healthy this year and are growing in skills but both staying very sweet.  My husband and I are still small farming and got to raise turkeys this year, see our farm thru a tragedy in the spring, and still come out better and stronger and thankful for each and every animal we are given.  Grateful for a garden that produced almost 120 quarts of carrots, green beans, relishes and stocked our pantry with potatoes and onions and plenty of salads! 

Making four pumpkin pies today (two of them weight watcher version), stuffing, and this appetizer:  http://smittenkitchen.com/2010/11/sweet-potatoes-with-pecans-and-goat-cheese/

Most of all I'm looking forward to spending time with my mom and dad.  My dad is an open heart surgery candidate and we are just so grateful for everyday with him!   My sister Tami and her family (they are expecting their next bambino in April).  Visiting my sister Deb and her family at a quick stop.  And just plain relaxing and overeating.  Hope everyone is enjoying this special holiday.

Two blogger mommies well worth the read

I work near the county courthouse and on Friday (Nov 19th) it was National Adoption day and MANY kids were all lined up with their adoptive families ready to go before the judge and finalize their new bonds.  Each had a huge bouqet of balloons and were beaming with smiles!  Beautiful families made bigger on such a special day. 

Of course the idea of adopting is always a glimmer in my eye so when I saw all this happiness in one spot it just reminded me again of the need and where my heart is.  So when I was reading a couple of blogs after my two smallest were in bed, I got to thinking of those families who have chosen for their first children to adopt kids with Ds.  I think every blogging mommy has an amazing story to share.  These two are just so extra chromosomally cool.  They both had family members with Down syndrome growing up and the CHOSE to adopt kiddos with Ds.  Grab a cup of coffee and check out their families:

http://pudgeandzippy.blogspot.com/

http://confessionsofthechromosomallyenhanced.blogspot.com/

Liam's playdough

Liam wants to share his playdough recipe with you.  He knows you might already have it, but just in case!

3 cups flour
1 1/2 cup salt
3 cups water
1 T veggie oil
1 T cream of tarter
drops of food coloring or package of koolaid

Mix all together in saucepan and heat over low heat until your spoon doesn't move anymore.  Take off heat and knead.  Store in air tight ziplock.  Enjoy!  One of the colors he made is "steel".  Total boy.

Today and tomorrow

Today was:

Slicing and dicing 40 pounds of chicken breasts into many meals for the freezer

Planting a willow tree and four tall blueberry bushes (thanks to my sweet husband)

Cuddles on the couch with twin small guys

Preparations for winter

Praise

Lots of laundry

Yummy lemon chicken with mushrooms

Tomorrow will be:

Encouragement to my dad during his heart diagnostic procedure

Travels with my sisters

Hugs from my teens (if I'm lucky)

Quiet time to read

Slow start to the week

I have enjoyed a slow start to the week today.  I had planned to join my sisters and mom at my dad's invasive heart procedure today, but that was postponed.  So, I enjoyed a little 'me' time.  Walked two miles in the beautiful sunshine!  Enjoyed a cup of my favorite peach tea hot and slowly.   Downloaded pictures.  Folded laundry at my own pace.  Caught up on some people's blogs and just putzed around the house after I got Tommy and Liam on the preschool bus.  I could get use to this!  I'll head into work this afternoon but also started the Lemon Chicken recipe in our crockpot ("Make it fast cook it slow" awesome crockpot book).  And made a double batch of homemade laundry soap.  If you haven't done this yet, run don't walk to the store and grab the three ingredients and some recycled bottles in your house and gett'r done.  It's simple, a huge cost savings, and the smell of lemon meringue is irresistible.  Here is a cute picture of Liam and cousin Madison on the lil 4 wheeler.  They enjoy spending time together, it's very sweet.

Two things

They weren't happy about the stroller. 

But a restraining device of some sort was in order, Christ the King church hosted a "Trunk and Treat" and had THOUSANDS of people. 

Blah, we don't do large crowds well. 

Tommy never recovered. 

Liam had a blast though!

We ended our evening with visting Hannah and Nate and Aunt Debbie's gang

Did I tell you we have LOTS of candy now?

And I'm on Weight Watchers :)

I love reece's peanut butter cups.

But I love my recent 13 pounds down even more.

What did you do for Trick and Treats?

What works for us Wednesday - Praying for orphans

Rarely is there a day in the past two years that I don't review the pictures on Reece's Rainbow website and pray for the orphans with Down syndrome.  Searching my mind and asking my family questions on how we can open our hearts and home to just one more.  The conditions in the orphanages have been documented and the lack of foster systems in most of the countries leave these children with lack of any form of a family environment.  Most of these children are transferred at age 4 to a mental institution where they eventually die.  There are lots of babies and young children with Ds in the orphanages, lots.  But my prayer and heart is with the older children.  Below are a few that I thought would pull on your heart and perhaps soften it toward giving to an orphan.

Please consider donating to the Christmas Angel project at Reece's Rainbow.  Go ahead, look at this link and spend some time there.  Pray for one.  Pray for all.  "Every child has a gift, they are just unwrapped at different times".  http://reecesrainbow.org/angeltreesponsorpage

These children are all older and heavy on my mind because they have been graced to stay longer in the baby houses of orphanages, but soon, if not already, transferred to the mental institutions.  If you choose to give and pray to Reece's Rainbow, please let them know it's for their "Older Children".  The donations go into a grant for the next family to come forward and adopt.

This is Chelsea.  According to the Reece's rainbow:  Character: cheerful, kind This sweet little girl is almost 3 years old. She was born to a very young, single mom at 34 weeks gestation. She had some minor pulmonary issues in her first days of life as a result of her preemie birth, but she is very healthy now! She was born with an open oval window which may have closed on it’s own.

Chelsea is affectionate, friendly, inquisitive child. She loves to hug and kiss. She smiles and laughs a lot. She is a pet in the group. She loves to play with dolls, puzzles. She is petite and gracious. She is active for a child with Down syndrome and can be strong-willed, get angry and weep if anything is not her way. But she can be easily distracted from a disappointing her thing. She cannot dress by herself and does not want to eat by herself. Her appetite is not very good. She is rather selective and does not like sweets. She is used to a potty, but cannot ask about it.

She started to sit up at 1.5 years of age, then started to crawl. She started to walk at 2 years of age. Now she runs fast, walks up and down the stairs, slides. She exhibits some muscle hypotony. She is delayed in her speech development. She speaks with syllables, but understands what is said to her and is obedient. To the question “where?’ she shows correctly her eyes, ears, arms.

Chelsea will be transferred in the coming year to a very remote part of the country, and will be *out of reach* for adoption. Hope someone will consider this beautiful child and give her hope for a future!

Boy, Born April 17, 2003

Brandon is very active, happy, and relatively high functioning. He is attending preschool classes and lives in a group of children with a wide range of abilities. He has a very happy personality and loves attention from adults. He plays well with other children and participates in group activities. He is healthy and making progress in all areas of his development.

Brandon’s social worker so badly wants him to have a family. She believes that he will do very well in a family environment.

From a staff member that met Brandon in April 2010: Brandon was very friendly, active and sought out our attention. He was very affectionate and laughed and played with us the entire time we were visiting his group. Even though he wanted all of our attention, he allowed the other children to interact with us as well and did not show any signs of aggression toward the other children. The caregivers had nothing but good things to say about Brandon and his development and they are very hopeful that Brandon’s forever family will find him soon!

Pure and undefiled religion in the sight of our God and Father is this: to visit orphans and widows in their distress, and to keep oneself unstained by the world.   James 1:27

I wonder

I wonder how Tommy can visit two separate emergency rooms in one day?  His g-tube fell out during the night.  Actually the balloon was still fully inflated and he must have rubbed his belly against our mattress (climbing in during the night).  I was talking to my sister Debbie in the morning and thought I stepped on a spider but looked down to see it was his g-tube.  Heavy sigh.  Long story short, St Joseph ER lacked a credentialed anesthesiologist to sedate Tommy.  When we got to Children's they placed a very thin catheter in the very closed stoma and every 20 mins or so they replaced it with a larger catheter thus dialating the stoma until they were able to place the 18 french mickey back in.  We got to visit the radiologist and she said it looked good, their staff loaded Tommy with toys and stickers and we ventured home that night.  I hope, soon, very soon, there will be a mini-Children's Hospital located within St Joseph.  So that Tommy can still use the existing wonderful skilled st joe's staff, but we would have access to credentialed pediatrics in an emergency situation.  Taking Action for Children and Youth with special healthcare needs is a group working toward this.  Google the Whatcom County Health department and look at the notes, mission statement and passion that has been accumulating for the last 18 months.  I think this next year will hold huge things for genetic clinic and speciality peds at the hospital.  Fingers crossed.

I wonder how Liam can line up his cars and call them his family and name each of us as one of his matchbox cars.  Pointing to each individually he says our names and all six of us are there.  Two being towtrucks, one big and one small.  He names them as Tommy and Liam.  Tommy is the small one he says.  Wonder twin powers. 

I wonder how Hannah can cheer in 40ish cold weather.  I wonder how Nate and I stayed to watch her last night.  It was an away game, in Deming.  I wonder if Colin's saturday job working on snowmobiles with his friends will be fun.

I wonder how I forgot yesterday was the ski swap and I missed a great opportunity to get gently used ski stuff.  I wonder if Liam's hearing appt on Tuesday will show that he has a mild hearing loss.  I wonder if my youngest sister Tami is feeling good with her pregnancy and I have been miserable about calling her.  I wonder where my phone is.  I wonder if the friend I had lunch with yesterday knows that she has greatly influenced some of my decisions lately. 

I wonder what next week has in store.

Two weeks in review

Remember those movie critics that would give a "thumbs up" or a "thumbs down" to a movie after they reviewed it?  Well, I'm giving the double thumbs down to the past two weeks!



Homecoming for Hannah (Nate stayed home with me and played video games)



 Hannah and Nate have been more than a handful lately.  Nate made some risky choices and now we are engaged in some long term help which we hope has come at the right time.  Many times the past week I have been brought to my knees praying for his safety, bartering everything I own and am to erase all that happened and return to the 'happy' point before all of this.  But I quickly realized that we all make mistakes, God doesn't want to barter and healing process began the point we all fixed our hearts and minds on getting better.  It's painful.  It's humbling (I never thought I would be "one of those mom's" who's kid tried something).  It's all about Nate now.  The right, and most amazing people have been placed in our path on this journey.  I can't even begin to explain who or how or why, but I'm in awe at every turn.  Nate feels better.  He is making some incredible decisions about which path he is choosing for this next year.  Is it weird to say I couldn't be prouder, even though I was the most disappointed I have ever been?     

  Liam is having a blast at preschool.  But his expressive speech has really taken a turn for the worse lately.  So we are going to call WWU speech services this next week and get him connected to special help.  He continues to be a really sweet little boy. 

Tommy is loving preschool although *super* active there and easily distracted.  He is still not pronouncing a single word.  His signing is slightly improved but not many words there either.  He is just so incredibly active running, jumping, climbing that he doesn't talk.  The past two weeks have been frustrating with him because he can't tell me what's wrong or ask for a food item.   I'm going to look into the point/talk system and WWU for him too. 



Tommy ready for school



Hannah is cheering just for Sehome now and it greatly is helping with her stress level and mood.  She is fourth from the left at the game last night where we froze.  She hit a breaking point this last week with Running Start at college, High school and two cheer teams.  It was ugly.  

Me and Hannah freezing at half time

Perhaps the biggest "thumbs down" has been my dad's health.  He was diagnosed  few weeks ago with Aortic Stenosis and was termed a probable open heart candidate to get a biological valve as the replacement.  He was to undergo two additional tests, one is done already and shows many of the arteries surrounding the heart also have calcification.  The second test will be done soon and will show for sure what the extent of those arteries look like for either proper medication or surgerical options.  My dad is 87 this year and is the picture perfect healthy man.  If the surgery changes from valve replacement to bypass plus valve replacement he will probably decide not to do it.   My dad has been the best dad in the world and a father for almost half his entire life.  I just can't imagine him not healthy when he has rarely ever been sick and definately not needed many health related help over the years.  Please keep my dad in your prayers.  For continued well being until the next test is performed and for peace & comfort in knowing whatever he decides to do it will be the right answer. 

Off to the pumpkin patch later today to turn the tide on the "thumbs down" review.  

Dusting off the cobwebs

I've decided, with a consensus of one because it is just me doing this blog, that I'm going to rename it and open my daily life to a more honest view of my heart.   So, I might change the name again, I might change the background, I might make other adjustments, but I'm dusting the cobwebs off so I can talk about more than just Tommy, more than just my kids, more of our life.  Be patient.  It will be worth it I hope in the end.

Buddy Walk 2010

 Lots of fun this year with music, old friends, new friends, cheerleaders, silent auction, raffle, goody bags... the list goes on!  Hannah and Liam.

Hannah and Alyssa with Tommy.

Nate, Hannah, cousin Mack, his friend Jeffrey and Alyssa.

 Liam and Tommy on a lunch break!

Cooper and Tommy really enjoyed the bubbles!!!

I love this picture of Hannah, me and Alyssa

Tommy loves a good bird seed pool.

 Daddy and Liam having a blast!  As usual.



Children's visit for echo and communication journals to school

I keep meaning to sit down and update the blog, but wow have we been busy.  This is Tommy and Liam's second year at early intervention preschool.  This year I made them new communication books for the daily back and forth information from me to teachers, nurse, SLP and/or OT.  These worked fantastic last year.  First of all, their teacher Mrs G is fabulous.  And with all the information in one spot, I'm more likely to remember issues, SLP homework, etc.  Aren't they just plain cute?

This is what last year's journals looked like with the information going back and forth.

We spent an entire day at Children's recently.  Left Ferndale at 5:30am and didn't get back until well after dinnertime.  Tommy had his regular 6 month echo on his heart and we met with General Surgery to look at his pending hyrnias and his G-tube.  We also took candy to our favorite blood draw tech Hector.   Daddy and Liam are very sleepy in the wee hours.  Liam was allowed to keep his pj's on for awhile, so was Tommy but Daddy wasn't :)

We checked Tommy in at 7am for a sedated echo.  Sedated because.... have you seen Tommy lately?   He is a wild man of bursting energy and to stay still for an echo was just not his scene.  So, he didn't actually receive the sedation until almost 9am (grrrr) and he was given 1000 mg of Chloral Hydrate (65mg/kg) and after 30 minutes of BEATING me and JUMPING and BANGING his head while his eyes were closed, I finally asked for another nurse to help me and expected him to fall softly to sleep...at....any....moment.  The nurse assured me that 30 mins was about when most kids drift off.  Well, the nurse practicioner needed to come back and Tommy received an additional 150 mg of Chloral Hydrate and after a total of 70 minutes of the most BALISTIC and WRITHING and HEAD banging and TOSSING and THROWING himself off the bed dozens of times with me catching him,  and a total of THREE nurses... we finally watched Tommy absolutely... in .... one...split...second...drift to sleep.  That is him below.  Sleeping. 

I'm in the opposite corner curled up..in a ball... twirling my hair.... sucking my thumb... teary eyed.

One of the nurses said it was the most "impressive" displays of a reaction she has seen in her nearly 25 yr career.  I dared her to say "worse".  She didn't.  But she did tell Colin when he finally came to join us with Liam after their breakfast that I deserved a medal. 

I won't allow Tommy to ever go thru that again.  Of course he doesn't remember it because of the type of drug it was.  But I know what happened.  And we won't do that again.

The echo pictures were good enough to determine we don't have to go back for a year!  The mitral valve still has a mild to moderate leak.  But it's been consistent.  And can probably wait until his teens or older to repair.  Tommy celebrated with yogurt.  I waited until at home to celebrate with something tall and cold.

General surgery was equally as great of news.  The hyrnias are fine for now and just need to be watched.  His G-tube looked great and we are caring for it just fine.  The surgeon even offered to look at Tommy's undescended testicles in preparation for a visit to Urology in December.  He didn't think we needed to do anything.  So... the next year we have, drum roll please, no surgeries!

One really good additional thing happened that day, Colin and I rotated caring for Tommy so that the other one could take Liam into EVERY playroom in the hospital.  We had a blast with Liam.  Painting, coloring, walking, talking, playing with cars, the whole works.  Very sweet one on one time with a very sweet toddler.