Wednesday, October 27

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".

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

Saturday, October 23

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.

Saturday, October 16

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.  

Monday, October 11

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.

Saturday, October 2

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  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 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.

Tommy Adventures