Tuesday, August 28


After our baths tonight mommy enjoyed some smiles from her two little guys.

Saturday, August 25

Tales from the crib

Tommy had an eventful few days. First the disappointing news, there will be no ear tubes on Monday. No miracle was performed, he still can't hear much .... rather the anesthesiologist got cold feet. The day prior to the surgery and we get a phone call saying "Tommy is too medically complex". He did say that Children's Hosp would be able to do the procedure. Tommy will visit yet another dept at Children's!

Now for some good news. Feeding therapy this week was great. Lemon juice in pureed foods is just what Tommy was wanting to taste. Yep, lemon juice. And don't be stingy with it. Granted he only eats around ten baby spoons full of pureed foods .... he is keeping most in now and swallowing! We still have the appt this coming Thursday at Children's to discuss the peg and eventual gtube. This is not uncommon for Hirschsprung Disease kiddos.

Next for the most exciting news, Tommy is rolling! Rolling, rolling, rolling. Counting a roll as from front to back and then to front again... mommy watched Tommy roll six times! He is going to keep up with Liam who crawls now. Mommy is getting anxious typing this just thinking about what this means. Whew!

Thursday, August 23

Where has Tommy been?

Tommy had been busy this past week at the fair. Hannah and Nate showed goats and an alpaca at the Lynden fair. Both were pleased with earning many blue ribbons. Nate even earned a spot in the Round Robin competition which meant he competed amongst the other 'best showman'. The competition included showing lots of large animals. Tommy was interested in watching big brother for awhile but soon was more interested in his thumb!
Our 4H group Pymy Paradise did very well in the various competitions. Erin even won the Round Robin (go erin!).
Liam enjoyed the fair too! Mommy is happy to say we enjoyed a few quiet days at home once the fair was over. But Liam has some kind of cold virus now and we are hopeful Tommy doesn't catch it because Tommy is scheduled for ear tubes on Monday.

Sunday, August 12


Tommy and Liam enjoy listening to a good book read by big sis' Hannah.

DsO Boys day at the beach

DsO organized a wonderful afternoon at the beach (Kristy you are amazing). It was suppose to be only for the boys. Our entire family just had to go though because it sounded like it was going to be fun. It was amazing. Perfect weather (not to sunny, not to cold), right on the beach (bags were given to the kids to collect beach items), lots of food, we were overlooking a few of the islands, and the other parents and families and kids were..... amazing. Hannah and Nate were given the wonderful opportunity to kayak on the bay. Tommy loved the spotaneous musical, and Liam enjoyed making a mess:) If you are in Whatcom County you really should come to a DsO event, a great opportunity to meet other kids, parents and extended families.


Yes all 6 of us went swimming at the Aquatic Center. Parent-to-Parent invited us to a swimming social. We met many wonderful parents. Tommy really enjoyed the water but liked seeing all the different people even more! The pool water loosened the tape on his ng tube and pretty soon mommy was not only trying to balace her floppy baby but also grab the ng tube before it floated away! Oops. Daddy and Liam were like fish in the water, both loved it. Hannah was a Super Sitter for this event so she enjoyed swimming with a little boy. Nate stuck close to his baby brothers and provided lots of entertainment.

Grandma Sue and Papa Bill

We enjoyed grandma Sue and Papa Bill visiting! They made a yummy dinner and we REALLY enjoyed them. Hopefully they will be back soon, we miss them.

Wednesday, August 8

Ear tubes

We are HAPPY to report Tommy will have his first local surgery! Ear tubes will be placed in an outpatient procedure at Pacific Rim here in Bellingham. Daddy and Mommy are so happy this will not be a Seattle trip.... and we think Tommy is really looking forward to be able to hear more.

Monday, August 6

Worth the read

I copied this from a Dallas News article as it perfectly states many of our own thoughts:
By Virginia Arbery
"Ending Down syndrome pregnancies bears all the marks of a pogrom"
09:06 AM CDT on Sunday, July 8, 2007
The year Julia was born in New Hampshire, 1987, I was the only geriatric pregnancy in the state issuing in a Down syndrome child. When I recovered from the pediatrician's insult – I was 37 – I learned from him that the other nine mothers in the state to deliver Down syndrome babies were still in their 20s.
I asked him why this was the case; conventional wisdom had led me to believe that the likelihood of giving birth to a Down syndrome child increased with maturity. When he told me that most woman over 34 usually had amniocentesis done to avoid giving birth to a Down syndrome child, I was stunned. After first being dismayed by – what to call it? – my demographic solitude, I soon turned my attention to what Down syndrome meant practically for my new infant. The books we quickly read, and the instruction from excellent social services helped us. Operating outside the realm of reason and structure were other powerful supports – call them graces.
At the end of Julia's first week, I learned that a publisher friend of ours had lost his wife to colon cancer. We had known them since graduate school, and the widower came over to tell us that his wife gathered their eight children around her bed to pray for Julia and us every night of that first week.
Even as she said goodbye to her own children and to the infant she had given birth to – an operation might have saved her and killed the baby inside of her – Susan was thinking about our challenge. I felt a liberating happiness over Julia, as did our little girls and their dad, for reasons too deeply private to explain.
Julia's life soon began to bring out the excellences of others. She brought our little college community even closer together, a joy to the students and a prize to anyone who held her. Early Intervention trained us to stimulate areas of her brain by waking up facial muscles, working to get her to sit up or to crawl – a task she never mastered, scooting instead with her two hands and bottom.
I would go from teaching the Declaration of Independence and the Federalist Papers, to a large room uptown with five other mothers propping up their floppy babies. Nothing else has ever quite brought home the meaning of "all men are created equal endowed by their Creator with certain unalienable rights and among them are life, liberty, and the pursuit of happiness."
We were all working for that fullest expression of life and happiness for our babies. I thought about the "prudent" mothers who had aborted their own children with Down syndrome. I grieved for those who, exercising their reproductive rights – a new appropriation of the older notion of liberty, which was rooted in duty – would never know the profound satisfaction of raising such a child.
I will never forget Julia's first birthday with all her sisters around her. When we finished singing happy birthday, Julia put her hands together and clapped for the first time. Of course, we all cried on cue. Things that were so ordinary for the others became accomplishments – triumphs.
Julia slowed us down, and, instead of waiting for each stage of development to naturally emerge, we would coax it along, beckoning it with intentionality and art. She taught each child an intelligence of the heart, and she began to teach me patience.
Each member in our family could give a personalized account of his or her relation to Julia. Every daughter, for instance, has a perspective on her own vanity because of her. Julia expected to be 3 inches taller when she turned 16; I solved that problem by buying her 3-inch platform wedges.
But often it's not that simple. For instance, on the way to school she will pull down the visor mirror, look at herself, and say, "When I get to heaven, my eyes are going to be like my sisters', and I am going to be 5-foot-11, and my voice is going to sound like Kelly Clarkson's." I tell her that God made her the way she is, that she wouldn't be Julia any other way, that we love her just as she is, and that she is beautiful.
Of course, not everyone thinks that way. Some told me I should not make the same mistake twice – to have my tubes tied. I'm glad I didn't. Our one son was born after Julia, when I was 40, and our seventh daughter – now a sophomore at Ursuline – two years later.
Our son just graduated from Cistercian Preparatory School. Over the past few years, he and his classmates have helped to organize the bi-annual Down syndrome Dance. Will's friends love Julia, and she shamelessly loves them back. They'll all be here at her 20th birthday party Tuesday. She will probably sing "Desperado," as she did at the recent graduation of two of her sisters, belting it out on key and bringing the house down.
I understand that the American College of Obstetricians and Gynecologists is offering women a safer method than amniocentesis to determine whether a child has Down syndrome. The College makes the argument that it is more responsible to inform parents of their options beforehand so that they can decide whether or not to let the baby live.
This argument shakes me to the core, for it bears all the marks of a pogrom – the license to be aggressive against the most benign population conceivable.
Until now I have never been an advocate of special needs' issues. I have quietly reared my daughter and her brother and six sisters. But I can remain silent no longer. Twenty years ago, many of Julia's potential friends who are like her were intentionally eliminated, perhaps out of fear or perhaps out of a desire for a regular family with regular children.
I think of those thousands of children who will never change those families for the better. They will never be at a Down syndrome dance, never hug their grandmothers, unafraid of their wrinkles or of people's imperfections. Who will love us as well, as simply, with such undesigning candor if we invent a world protected from our difficult blessings?
Ironically, scientific work on turning off the additional action of the genes that cause cognitive impairment in Trisomy 21 now offers more hope than ever before, especially at Stanford School of Medicine's Center for Research and Treatment for Down Syndrome (dsresearch.stanford .edu). More research dollars are going into killing these children before they are born than into this noble project of helping them. And why? Because citizens value their freedom?
Are my husband and I less free because we might have Julia with us our whole lives? Hardly. We would probably be enslaved to many more false notions of reality. In any case, we must trust that there will be a meaningful work and life for Julia. Maybe one of her sisters will take her in. Maybe she'll live in a group home.
These are all decisions we will have to make as a couple, as a family and with Julia. These will not be easy decisions. One thing is sure, though: She is our defining blessing. How could we have known that in advance? To accept her full humanity is to accept our real selves in all our imperfections.
My son put it well in describing how Julia likes to personalize her lead pencils, tapping them on the table top as they become characters in her daily life – at school or at home. We will sometimes hear ourselves oddly repeated in her animated version of our loss of temper or other foibles. In describing this game Julia plays, our son wrote that as she taps her pencil people, she taps into us.
Virginia Arbery teaches in the Master of Humanities Program at The University of Dallas and is the mother of eight children. Her e-mail address is varbery@sbcglobal.net

Saturday, August 4

Feeding and OT appts

Thursday and Friday included a feeding therapy appointment and an occupational therapy appt. Tommy enjoyed practicing eating outside in the nice sunny weather with his feeding therapist. Slow progress on pureed foods continues to be made, Tommy loves plums with applesauce.

Occupational therapy included bringing his toes within reach of his hands. He liked to pull at all his little toes. We set goals for the next six months and enjoyed a conversation about feeding challenges. Grandma Sue and Papa Bill came to the OT visit with Tommy/Liam and mommy, they enjoyed seeing what Tommy's day is filled with.

Wednesday, August 1


Daddy, Mommy, Tommy and Liam enjoyed the lake and all our family there. Hannah and Nate were in the water during this picture!

and more Montana pictures

Daddy and Liam enjoy Lake Bitterroot. Mommy and Tommy were close by with their toes in the water.

Tommy Adventures