Sunday, May 31

Too long of a painful week

It was a long week. Of pain. Of sadness. A friend to Hannah (our oldest) died this past week. She was only a sophmore at Sehome HS. Amareen Gill was beautiful. Inside she was sweet and caring, outside she was gorgeous, but what I remember most about her was a HUGE smile. Our family continues to grieve for her and the entire Gill family. Many days we have been lost in thoughts about her. But what I want to post here is a poem from the facebook that has been set up for memorials. What I want to say is take to heart what you say to others. Words hurt. We need to raise our children and ourselves to be kind, loving and thoughtful. Just like Ami was. If only our world could grow more kind and sweet like she was. Sure we can all take deep breaths and make our ways through varoius daily activities, but this has left such a hole in my heart. Hopefully you can meditate/pray/think of the Gill family. And hopefully you can share with your children in some way. They can be the light in this dark world.

This is a poem that was sent out to the Happy Valley staff by Ms. LaVonne Chue (Art Teacher):
I wish you knew
Tomorrow would be better.
That life is full of disappointment and victories.
I wish you knew how your smile
was so contagious
and your bright eyes put people at ease.
I wish you had a chance
to experience more.
Love, independence, responsibility
and your own power.
I wish we knew
you were hurting inside.
You put on such a
Strong front.
I wish I knew
How I could have helped.
How can we see
what is in your thoughts behind the brown eyes and perfect smile.
How can we create a spark of light
When the world is dark and desperate.
I wish you knew
How losing you
Will make me try harder
Make me think smarter about the world
and how words will change a mind
and how a little compliment
might warm a saddened heart.
I wish you knew,
I wish we knew,
I wish you weren’t gone.

Thursday, May 28

Catching Up

Wow, the days are just flying by and I haven't posted in so long. We have been enjoying sunshine here so I'd much rather stay outside than blog! Here are the updates.

Liam loves to scooter around now. Aunt Debbie gave us a scooter from her kids and it is in constant motion now.

Tommy and I loved swimming in Aunt Debbie's pool and celebrating our cousin Madison's big #4 birthday. She is soooo cute!

And we spent Memorial Day putting the 'memory' back in that day. The older kids really got into our lessons for that weekend. We attended the festival of flags, over a thousand flags. Read "In Flanders fields" poem, listened to audio from the Library of Congress that veterans have recorded. And thanked my dad Bill Pepperell for being a Master Chief in WWII, Korea, and Iwo Jima. Dad you will always be a hero! Now if I can get mom and him to record his interview for the Library of Congress :) We thank our nephew Joseph Amato for his service and right now he is in Iraq. Joe we love ya!
More news from the last few days includes mommy getting kicked out of speech therapy. Tommy is trying to learn to drink from a straw but cries and complains alot, which means I immediately comfort him. Heavy sigh. So the therapist politely said when he 'gets back together' wait in the lobby...... okay, I'll do a diaper change, get some juice for him and then we will be back in and try again. Nope. She said "you go.... he stays". Hmpf. She was EXACTLY right. He complained a couple more times that I could hear from the lobby and then actually accepted a few sloppy straw drinks. Yeah Tommy! And thanks to a proactive therapist.
And last but not least, the Ferndale School district special education preschool coordinator came over yesterday for our transition meeting. Lovely, lovely lady. Plus our Family Resource coordinator was there and I just want her in my life forever. Seriously, our FRC is wonderful. Between the two of them I think I could figure out this whole DDD system and education. Anyway, the FSD coordinator will be requesting an out of boundary school, still within the district, but it has SIGN LANGUAGE (can I hear a shout out from everyone hoooooray!). We will hear from the district shortly if that school has room for two adorable boys who will be three years old in December and ready for preschool. Just doesn't seem possible! They will have circle time, books, turn taking games, speech, ot, playground, snack and lots of fun stuff.

Tuesday, May 19

Children's PASS clinic appt.

Yesterday was a LONG day for Tommy. And in general, he let me know it was too long all day. We had developmental playgroup from 9-10:30am at Whatcom Center for Early Learning. I should have known that his fussiness then was a sign that the rest of the day would be similar. I took Liam to Promise for the rest of the day and then Tommy and I drove to my parent's house for a wonderful lunch and visit.

Then continued down to Children's for PASS clinic which is the prequalify anesthesia surgery clinic. He will be in surgery on June 3rd for clogged tear ducs and second set of ear tubes and needed their approval for anesthesia clearance. And that is where the decibel level got really high, he screamed and screamed and screamed. Nothing worked. He knew exactly where he was and who the nurses were and he wanted nothing to do with anything. It breaks my heart that as much as I use my words to inform him and my arms to comfort him, there is nothing that is helpful. We are now at the point of parenting Tommy that we simply need to make the best decisions for his medical care and trust that God is walking with us, and carefully tend to his emotions, but in the end he will be so upset and not understand. It is heartwrenching. I would love to know from each of you ideas for kids with cognitive delay in gaining comfort in places that they know it's going to be painful. Next time I'm bringing our portable dvd player and continuing "Finding Nemo" for the fifth time that day. Honestly, it gets him through. It is his happy place, watching that movie might have gotten him thru the appointment. But, in the end, the two nurse practicioners couldn't get a blood pressure, no oxygen saturation, no conclusive clear lungs, nada. One pointless trip. The nurses simply said we have been thru enough surgeries to know if he is okay on the 3rd and use our judgement. Heavy sigh.

So, I needed a little 'pick me up' after that appt and so did Tommy. We ran around outside Children's to get our smiles back on and then decided to visit our friend E who was at a neighboring hospital. He is slightly younger than Tommy, equally as handsome, and has Ds along with Hirschsprung's disease. Tommy was THRILLED to see E's mom and immediately wanted outta the ergopack. I was thrilled to see E's mom and E and know they are well and healing quickly. E's mom is intelligent and savy about medical issues and over cold hamburgers we got a chance to catch up. Oh the joys of having medically involved kiddos.

So, I'm asking for input on bringing Tommy comfort at clinic appts. He does really well traveling so that's not an issue. It's just once we get into the clinic room he knows he doesn't want to be there. Yelp.

Sunday, May 17

Sometimes our path is shared

So similar to our Tommy and Liam, another mom of fraternal twins is a gifted writer and pens the story so well. After I read her book last year, with many tears, I would highly recommend it.

Short video:


Friday, May 15

Flying Mickey

Yesterday was an interesting day for Tommy and I. The twenty minutes that I'm about to share with you has never occured to us before. I only wish our 'first time' experiences would begin to slow down soon. But life with a medically complex kid, never does. We are so blessed that Tommy continues to be healthy and these small 'first time' experiences pale in comparison to many that others face.

When we get to Promise daycare, the boys LOVE to immediately begin playing with cars, the 'house', their friends are waiting for both of them and eagerly welcoming, rocking horse, etc. I stay awhile with them and do a quick catch up with their teachers, but often am not totally devoting my attention to either of them. So when their teacher mentioned Tommy's belly plug was 'out', I was thinking she meant the plug on it had opened, since I wasn't exactly looking at either of the twins. Nope. The ENTIRE mickey had come out of his stomach. It had failed and was lying on the ground.

God's timing is great, absolutely perfect. First, I was there when it happened, if anytime for his Mickey to fail it would be best if dad or I were near. Second, my husband, and many of your blogs, had told me basically what the following tasks would entail. The teachers at Promise never faulter, they were calm, and each of us figured out what to do next.

Literally, tummy 'stuff' was shooting out of Tommy. Morning breakfast, milk, etc. He wasn't fazed by it, but his walking around the classroom was making pressure on his tummy and 'stuff' easily came out of the stoma. One little classmate asked "why is that boy spitting up out of his belly button".

With the help of loving Promise teachers, I ran to my van and got our spare Mickey. ALWAYS keep a spare. Always. I inserted the tube into his stoma, took 5cc of water in a syringe to blow up the balloon, and presto. All was done. Just a reminder that the stomach makes funny girgly sounds, and when you have an open hole the sounds are amplified. That part made me queasy, so I just want to share with everyone it is literally open hole to the stomach.

One of his teachers had already cleaned up everything with bleachwater. Thank you!

Such a big event for my son and I. Tommy had a few tears, but both of us were pleased with how the event went. Cuddles and conversation afterward helped. Liam was fairly unconnected to the event. With all that he has seen, it didn't faze him.

And the lil' classmate to Tommy got a quick education in 'why' Tommy drinks milk thru his tummy tube. After sharing with this little friend all the related information, I asked him if he wanted to be a doctor when he grew up. His reply was "I JUST want to be a grown up". Sometimes it's just that simple.

Monday, May 11

And insurance will pay for speech therapy

We received the letter from United Healthcare saying that after receiving our appeal and reviewing *all* the documents we sent..... they will cover Tommy's speech therapy at in-network benefits. Heavy sigh of relief. Of course they put a 90 day period on this approval starting from 5/1/09. But it will get us farther with his feeding and speech issues.

Hopefully we will get a letter regarding our appeal of Liam's denial soon. I'm trying not to focus on insurance issues. The frustration is just pointless. And the hours discussing it lost.

God is good and the world is wide and wonderful. Each day we have met new people, explored new places and have exciting experiences. Insurance not paying for speech therapy is minor.

Dynamic duo

Today at playgroup, the dynamic duo had lots of fun.

Liam actually sat with me for most of circle time. He has been *hating* staying in the circle for songs. I tried not to use sign language because it really bothers him when I sign to the songs.

Small accomplishment for Liam!

The dynamic duo taking everything out of the bookcase at playgroup.

Building up, up, up....

And down!
We got to play in lentils and are still finding them in curious places.
And we met new friends. It was a fun day.

Tuesday, May 5

Speaking of.....

Speech therapy is now two to three hours a week. Liam receives two hours every other week divided between two therapists and one hour on the off week. Tommy receives an hour every week (sometimes it's our 0-3yr old program, the other week it's a private therapist).

The 'talker' is here. Our 0-3 program SLP has programmed the talker for our family routines (bedtime, books/games, outside and eating). Liam and Tommy will be using this to 'spark an interest' in language. But definately not relying on it. We are sticking with sign language and verbal expression. Which is much more portable.

This is a poor picture, but an $18 credit at the consignment store bought the water & sand playset, a pair of shorts for Liam, sandals for Tommy that will 'work' for him, a set of five battery operated tools, and a book of baby signs for animals (hard book of in color sign language). Whew! Good stuff for $18. Most of today's purchase was for therapy related suggestions from speech therapists. The motorized tools REALLY get Liam interested in communicating to us... asking questions (in his garbled up words), making 'reving' sounds, etc. He even said good night to his tool set. Sign lanuage is something that Tommy is always interested in and I thought the animal book with signs that name the animals will spark his interest too. He can sign 'chicken', 'cat', 'dog' and something that looks like half of the sign for goat. You can tell we live on a farm!

Sunday, May 3

Cinco de Mayo

I had lots of fun at Michael & Robert's Cinco de Mayo party. Aunt Debbie brought her stomp rocket and I love this thing. I chew on the white rocket and then try really hard to put it on the launch pad.
Liam is putting the rocket on the launcher so our cousin Madison can Stomp on it! Then we run around and find the rockets.

I just love the rockets.

The Ebert's brought the coolest pinata to the party and mom helped me hit it with a bat. I smacked it two or three times.

My big brother Nate got to hit it a few times too! And stuff came flyin outta that thing.

This is my friend Jack, my cousin Madison and my lil' bro Liam. We liked hanging out together.

After all the candy came outta that pinata, we ran for the stuffin's. There were so many beads and little bottles of bubbles, lots of candy, and little toys. We had fun!
Mommy is thankful that Aunt Debbie took me for a long while so she could enjoy the party a bit. Whew, I'm a handful. Huge thanks auntie!

Tommy Adventures