I read there are only really two kinds of prayers.... "please" and "thank you". Oh how true it was yesterday.
Tommy wasn't too fond of the ENT doc at Children's yesterday. But the visit was productive in the sense that his tonsils and adenoids will come out on 2/25. The doc termed Tommy's tonsils a 2 or 3 on a scale of 0-4. Not big, but with severe sleep apnea they really want to give him the best chance at keeping his airway open at night, in addition to the cpap machine. He will also get his third set of pe tubes on that day. Since Tommy is complex, it will be an overnight stay to make sure all his systems are back up and in the groove. I'm very anxious about this news, it's difficult to hear of surgery for our little son who struggles to mend from anything even a slight cold. So to hear he will have surgery makes for a heavy heart. Thank you for doctors with the wisdom and ability to give Tommy a lifetime.
While at Children's we stopped in to visit a friend of Hannah's who is there for a diagnosis and not feeling good at all. Oh how we pray for a diagnosis for Miss M and miracles to mend her body. Walking thru the double doors of the cancer care ward brought back a flood of memories for our friend Chelsea. It was simply too much for me, I went to bed crying. It just doesn't seem fair for children to go thru so much pain. Please give this family peace and comfort right now while they wait for a diagnosis. And a big loving hug to the Ebert family who I think about daily at this time of year.
The bright side of our day, and I mean BRIGHT, was my dad's 86th birthday party at a local mexican restaurant. Most of his grandkids were there (except three of my kids were back home) plus all three of his daughters. It was loud, yummy and hilarious when he wore the sombraro. My dad is an amazing man who continues to greatly influence my life. Thank you for giving me the BEST dad in the world!
Grace Unhinged -- A mom's daily ramblings of raising a daughter and three sons. Young adults, twin boys, a farm with goats to chickens, gardening and quilting, work and my sweet husband especially. Taking a day at a time and by the grace of God, we make it thru.
Wednesday, December 30
Sunday, December 27
Joyous Christmas
We REALLY enjoyed Christmas this year. Our second year of not being in the hospital :) The collage above is a new thing for me, it's *much* faster than posting individual pictures to our blog. Each picture represents a special moment for our Christmas celebration. Nate, Hannah and I are in the upper left corner. Along with my sister Debbie's family in the upper right. Middle of the page is the wonderul meal my mother-in-law Dorothy made and Colin's brothers and our nephews. The antiqued picture is of my parents home where we hade a fabulous breakfast on Saturday and enjoyed my mom and dad's company. Lower left is Liam on his 4-wheeler from grandma Dorothy. Hannah and Nate opening presents. And the most precious picture is the last one, Liam helping with Tommy's nebulizer treatment (just before I snapped the picture he was rubbing Tom's head).
We stayed with our budget for each of our four kids and each other. Praise God! I really enjoyed presents from my parents Pioneer Woman cookbook, and Make it fast, Cook it slow and pj's. I especially enjoyed the quiet moments this Christmas where I could read my bible and walk just a tad bit closer and slower.
This next week will include Tuesday at Children's for oto visit to talk about tonsils and adenoid possible surgery (although I doubt it), training Tommy on his cpap machine (yep we finally got it), and Thursday we take the teens for four days to Wenatchee/Mission Ridge snowmobiling and some much needed family time with just Hannah and Nate.
Friday, December 25
Merry Christmas
And suddenly there was with the angel a multitude of the heavenly host praising God and saying, ‘Glory to God in the highest, and on earth peace among those with whom he is pleased!‘ When the angels went away from them into heaven, the shepherds said to one another, ‘Let us go over to Bethlehem and see this thing that has happened, which the Lord has made known to us.’”
Sunday, December 20
Wonder week
Our stockings are hung. Six stockings to fill Santa!
This week Tommy has a busy schedule before Christmas day. Monday he is getting new orthotics. He has outgrown the last pair by just a little bit, but I know with a school schedule starting in January, getting him refit now will be a lot easier. Tuesday we will try to get an appointment for his first Synagis shot this season. The insurance companies approved a request for Tommy to have the Synagis shot series for RSV prevention. Letters were written on Tommy's behalf from Seattle Children's, Bellingham Immunology and our Pediatrician. And it worked! They said yep he needs the immunity. HUGE blessing this vaccine will be, our last inpatient stay with RSV was 10 days. Then on Wednesday, Tommy gets fitted for his CPAP machine. Getting a CPAP machine for 'off label use' for a little guy weighing 30 pounds was a miracle and much patience, thanks Shari at our home healthcare. Tommy will be ready for Christmas cheer by the end of the week!
Liam is REALLY enjoying Christmas preparations. Today at Sunday school he colored a little book that included the chapter 2 from Luke. He loves to say the words for this chapter when I read it aloud. Very sweet. And in his Child's bible it has a picture of the angel Gabriel with HUGE wings.... Liam screams FLY... FLY... whenever he sees the angel. No, it's not a fly... it's an angel :)
I have been enjoying small pieces of joy this Christmas season. Running into my favorite twin mom friend Sarah who was in Bellingham for the weekend from Idaho. Seeing her *beautiful* family. Enjoying my early presents from my parents to me The Pioneer Woman Cooks ... and the cookbook Make it fast, cook it slow. Mmmmm. Reading my bible, singing Christmas songs, frosting sugar cookie cutouts... telling Tommy he can't dance on the top of the dinning room table (he ate too many cookies), catching Nate peeking at the wrapped presents under the tree, and listening to Liam sing O Holy Night (he only sings the O part). I love the small moments this season.
Hannah's Cheerleading Regional Competition
Hannah is on Silverstars cheerleading and participated in her first regional meet! Their team won first place in their division. Yeah Hannah!
This other team looked great too! All of these girsl (and boys) were incredible athletes with REALLY good sportsmanship. The coach for Hannah's team really instills good character qualities as well as incredible stunts and tumbling routines. Each practice they talk as a team about a character quality.
Grandma Sue and I told Santa we were really good girls this year!
And then we went out to dinner and enjoyed Christmas presents early. Thanks Grandma Sue and Papa Bill for a fun day. And THANKS to grandma Dorothy for watching the toddlers. Liam and Tommy LOVED spending time with her.
This other team looked great too! All of these girsl (and boys) were incredible athletes with REALLY good sportsmanship. The coach for Hannah's team really instills good character qualities as well as incredible stunts and tumbling routines. Each practice they talk as a team about a character quality.
Grandma Sue and I told Santa we were really good girls this year!
And then we went out to dinner and enjoyed Christmas presents early. Thanks Grandma Sue and Papa Bill for a fun day. And THANKS to grandma Dorothy for watching the toddlers. Liam and Tommy LOVED spending time with her.
Thursday, December 17
Home and sick
Tommy was up last night with 102 fever and trouble breathing thru his very runny nose. And I'm feeling yukky too. So we stayed home today. Canceled speech therapy which was a real bummer as today was the last day we could see our private speech therapist as she is retiring from pediatrics. Called to cancel our cpap fitting this afternoon too. Tommy is doing MUCH better this afternoon. Pulmicort every 12 hours in his nebulizer and albuterol every 4 really helps. I'm feeling better after some alka seltzer for cold, it's an amazing product, thanks to my friend Patty for telling me about it. Hope everyone else out there is staying healthy!
Sunday, December 13
Three years ago
I wanted to share some of the twins photos from three years ago.
Their birth was a whirl wind production as well as the following month spent at Children's (our first of five inpatient stays). Things that I remember from this photo include how wonderful our family and friends were. Our neighbors the Weisenhorn family took over our organic pig farming (we left for Children's soon after the boys were born), Grandma Dorothy came and spent days upon end with us, Grandpa Bill and Grandma Sue spent each day also. My sisters, as usual, were huge encouragers. I remember we were blessed by skilled surgical teams that saved Tommy's life with a pull thru repair because of the Hirschsprung's disease. Ronald McDonald house. The Kirkland police department that unknown to us, 'adopted' our family for Christmas and decorated our Ronald McDonald room and placed wrapped presents for each of our kids! It brings tears to my eyes just remembering how special it was to come back to that room that night and have our kids enjoy a slice of Christmas amidst the struggle to keep a small boy alive. I remember how lost, absolutely lost, Colin and I were with the medical terms, conversations during rounds, ICU culture, and living in a hospital instead of our home. Since we left for Children's soon after they were born, we didn't have the opportunity to connect with other parents locally that had been thru similar experiences, we felt transported into a parallel universe! We both remember that our pastor visited us a number of times and encouraged our family in so many ways. Our faith, family and friends got us thru December 2006. And looking at the three year old toddlers tonight running around you would never know their rocky start.
Party day
What a busy day. The Parent 2 Parent Annual Holiday party was first thing on our agenda. We played in bird seed, ate lunch with a bunch of really cool families, wrote letters to Santa, made a picture frame for our Santa photo and *ran* around a whole bunch! There were more families at the event this year than the previous two years and it was fun to see so many kids and hear stories of raising children with special needs.
My sister Tami and her son Andrew came too. I needed an extra set of hands with the twins and they love playing with their cousin Andrew . And Andrew really liked the playground at the park we were at.
Liam just sees the playground at Bloedel and wants to play for hours! He is verbalizing more everyday but still uses some signs to get his point across.
We ate a really yummy lunch together.
After the P2P party, we went home because there was another party at our house...... THE TWINS TURNED THREE YEARS OLD!!!
Liam just sees the playground at Bloedel and wants to play for hours! He is verbalizing more everyday but still uses some signs to get his point across.
We ate a really yummy lunch together.
After the P2P party, we went home because there was another party at our house...... THE TWINS TURNED THREE YEARS OLD!!!
And this momma celebrated the memory of a natural twin childbirth with a HUGE magarita.
And suddenly, she saw this guy.....
Liam really likes dressing up as buzzlightyear and added the swimming googles. Too goofy.
Tommy really enjoyed Uncle Marty and was sleepy snuggly with him.
Happy Birthday Tommy and Liam! Mommy added their names and a school bus to their cake :)
And then, this happened..... A Whole Bunch o' presents.
Tommy really enjoyed Uncle Marty and was sleepy snuggly with him.
Happy Birthday Tommy and Liam! Mommy added their names and a school bus to their cake :)
And then, this happened..... A Whole Bunch o' presents.
Oh how fun was singing happy birthday!
My sister Debbie's family, we LOVE them, but somehow we didn't have enough chairs..... aren't they just a cute family?
The last party of the night was rather spontaneous. My sister Tami (smooshed to my face above) told us about her friend's son's culminating senior project of a Rock Band concert to benefit the local food bank. Huh? Well, that sounds like fun.... and off we went. With Hannah, Nate and Mac, us two, and her son Andrew.... we had a *blast*. The concert was in a barn a few pastures away as the crow flies. Kranz Koop is an old barn that has lots of neat antiques covering it' walls and a very comfy spot to listen to tunes.
Thursday, December 10
IEP
We all survived the IEP meeting. Eleven people and almost two and a half hours. Whew!
Tommy and Liam will start school after winter break on January 4. And the preschool teaching team is *very* ready for them.
Tommy and Liam will start school after winter break on January 4. And the preschool teaching team is *very* ready for them.
Wednesday, December 9
If you are local, come join a fun party!
If you are local to Whatcom County and want to meet other families with children who have special needs, come join us this saturday!
Parent to Parent
Holiday Party
Saturday, December 12, 2009
12:00 - 2:00 pm
Bloedel Donovan Park
Large Multipurpose Gym
2214 Electric Avenue in Bellingham
There will be an appearance by Santa,
crafts, fun activities, family photos and much much more!
Parent to Parent of Whatcom County
Supporting families with children who have special needs.
Co-sponsored by Bellingham Parks and Recreation Department
Supporting families with children who have special needs.
Co-sponsored by Bellingham Parks and Recreation Department
Monday, December 7
Thoughts from the north pole
Technically we live on North Star road, but for all purposes we will call it the north pole because it's 18 degrees right now. Lots of thoughts fill my head lately. The wonderful Christmas season filled with joy. The thoughts of the boys turning three. Hannah learning to drive and doing a great job. Nate being an amazing brother and son.
Fun weekend updates included a visit from our friends Bonny and Larry (complete with their bringing LOTS of donughts and delicious coffee)...we miss them and see them infrequently but it's always like we haven't missed a day.
We took all four kids out to chop down our Christmas tree. As usual, it was cold and fun. Pictures are on facebook. After we got the tree up and decorated and Hannah to/from cheerleading practice.... the twins and I were goofing around and poof.... I went head over heels backward. Yep. Colin of course got to snap the classic picture. All were fine.
Lots on my mind lately with the boys turning three this coming weekend. Thoughts of summers in Montana. Liam's love of trucks.
Memories of 'graduation' from ICU unit to the floor for Tommy, complete with an all night party in bed with his twin. Three years ago I would not have even know the happiness that comes from the nurses sweet certificate that show graduation from ICU. Tommy was so sick with Hirschsprung's disease and other issues we are grateful to God for getting us thru many rough weeks the last three years, the worse of which was this past June.
And I was thinking about how they fit on my lap. In my arms, on my chest. Now they don't stop running. And three years have flown by. Oh how happy we are that they will be 3 this weekend!
And I was thinking about how they fit on my lap. In my arms, on my chest. Now they don't stop running. And three years have flown by. Oh how happy we are that they will be 3 this weekend!
And since they are turning 3....we meet with the school on Wednesday for their IEP. We have so many people coming to their IEP the school psychologist said she was going to look for a bigger room. Their birthday party this weekend will include a school bus birthday cake to celebrate their going to school on the yellow bus.
I know it will go really well and the school will have wonderful ideas of how to help the boys continue learning. But it's one more thing heavy on my heart lately.
This picture is a year old, but I just love my family so much I had to repost.
Friday, December 4
Pioneer Christmas in the Park
Our downtown area has a historical park with real pioneer cabins. In the summertime we have toured the cabins during Old Settler days and watched reenactments of pioneer times.
Tonight we had a special treat to tour the cabins all beautiful with Christmas music, lights, pioneer people dressed in the Christmas best and enjoyed time with each other. I didn't really get much into the whole thing... but you can see the pictures in a minute.
Before we went to see the cabins we ate at our favorite restaurant. Now that I liked! Since grandma sue is in town we got to eat with her and she brought all of our cousins (Aunt Deb and Uncle Rob are in a place called Hawaii).
When we toured the pioneer cabins, the church one had a beautiful nativity scene in it. Here is mom and I. She put me in the ergo pack because I was running around a *whole* bunch and acting crazy.
The old barn had really BIG horses in it and I liked petting them. Here Nate and Liam and Madison enjoyed the horses too. It was a big surprise to open those barn doors on a dark night and see those BIG horses!
Mom can't stop laughing when she sees this picture of me and Santa. He was a nice guy and all but I just wasn't into it.
Christmas in the Pioneer park was fun though!
Thursday, December 3
Christmas music
Promise does an amazing job each year preparing a beautiful Christmas program. Each of the different classes recited verses from Luke and then sang together. It was such a special treat!
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