Retropost of our weekend

On Saturday I was a guest at Cascade Dafo's training class for therapist. Yep, I stuck my little footsies out there for the therapists to learn how to fit special 'thotics for kids feet. And I showed them how I walk barefoot (stellar example of a flat footed pronater). But I got tired and whiney so mommy had to crawl on the floor to get me interested in walking. She didn't mind though. The company generously gave us a pair of Dafo's for our time spent at their training. Really nice! Plus they made mommy a cd of all the pictures of our time spent with them to date. A few visits and the photos are wonderful. She thinks it's because I'm sooooo handsome that they keep asking me back.

That was the highlight of our weekend. All else went downhill. And fast. Liam and I got really hot, up to 102 fever with ibuprofen. Everyday, all day. Then I got this rash all over my belly and back and it won't go away. Liam got a few of the spots on his back but mommy said mine is "remarkable". We stayed home today and will be home for the next few days. The doctor only talked to us on the phone and said to stay hydrated and rest. It lasts 7 to 10 days. Blah! Sick again.

What works for us Wednesday

A day early! Only because I will forget to post this if I don't do it while it's on my mind.....

Awhile back my friend Kristy posted about a new MTV show called "How's your news". Here is info about this new show:
http://dylanupdate.blogspot.com/2009/01/hows-your-news-official-trailer.html

Well, we were nervous about watching the show but VERY curious. So, with our teenager kids sitting next to us we all watched most of the shows. I think we missed one over the season. I cannot say enough wonderful comments about the sheer beauty of this show.
http://www.howsyournews.com/

The best aspect of this show is showing us and the rest of the world that adults with developmental disabilities can be HUGE contributors to society. Unfortunately we just haven't created enough, or the right type, of jobs for all members of our communities. These reports on "How's your news" are great! They ask questions that are on their minds. They talk about their feelings, they share themselves, they make the news events interesting. We laughed, we cried, we 'winced', we shared their joy. Truely beautiful!

We can only hope that it will be renewed for another season! If you missed this season you can see some of the episodes on the link above.

Goat wrangler

It was such a beautiful day I decided to go out to the barn and play with the goats!

I see the barn.... and I'm heading out there!

My brother Liam decided to come out to our barn too. I told him the goats were there!

Mommy kept showing us the sign language sign for "goat" but we were not interested in that. We wanted the goats!

First, we fed the big dairy goats some hay. They seemed to really like that.

I don't really like the texture of hay. But mommy said it was a good sen-sory texture for me to get use to.

Then we went into see the pygmy goats. They are SO cute. I wanted to pet them..... so I started walking to over to them.

The stall is full of hay and very uneven. My feet didn't fail me though. Good thing because there was yukky goat poo there.

So then I ran a little toward them..... they weren't looking to run away from me!

Oops, now they decided to move, so the chase was on.

I followed them around the stall trying to pet them.

Mommy finally stopped laughing long enough to grab one so I could pet.

And that is how you wrangle goats!

What works for us Wednesday

Great news from our appointments at Children's Hospital.

First place to visit was the ear department. Daddy gave me flying lessons while we waited for the ear doctor at Children's hospital yesterday. It was so nice of Grandma Sue to pick up Liam so I had Mom/Dad to myself.

The doctor used this big microscope to look into my wee lil ear canals. He took out a BUNCH of yukky stuff and my right ear tube! Cause it was just sittin' in there doing nothing.

Then it was off to audiology for a hearing test. Sans ear tubes! This is what a soundproof room at Children's in audiology looks like. Don't be afraid though, a nice lady comes into the room with your mommy and blows bubbles and plays with ALL kinds of toys to help the test go really good.

I can hear in the 'normal to mildly loss' category. Can I hear a YIPPEE! Huge news for a kiddo that once qualified for the deaf/blind program in Washington because he could hear at 65 decibels and had delayed visual maturation. Oh how far I have come. I will get new ear tubes sometime in the next few months because my fluid behind my ear drum.

Then it was a race off to cardiology for my 6 month echo. My mitral valve leak continues to be rated 'moderate'. Mommy thinks it looks like the 'swirling vortex of terror' because on the echo tv screen it's blue, red and yellow swirling like a tornado.

Our cardiologist says we can stop our heart medicine Captopril. Which apparently has done us no good (wasn't bad either) and now can be ended. Which is terrific because it's the last one that was G-tube dependant. AND daddy doesn't have to stay up to 11pm to give it to me.

Someday, I will probably need more work on my heart. But for the now the problem with the valve isn't changing. Even though I'm running and walking and climbing.... it stayed the same. Hopefully I can grow a bunch more before I need it fixed again.

Mommy and daddy visited friends in the hospital, had lunch, and then went to Grandpa Bill and Grandma Sue's house for the very best St Paddy's dinner and to pick up Liam. It was a wonderful day filled with good news. So many of my days at Children's were much different, so we are sharing our joy with the world.

Children's Hospital visit

Tomorrow is our "Every 6 month" follow up in cardiology for post open heart surgery and continuing mitral valve leak. There is a 10am echo and an 11:30 meeting with our cardiologist. We are hopeful the doctors will reduce Tommy's heart meds to twice a day. Simply because the 11pm medicine is a hard one to continue to stay up for! And we pray that his heart, specifically the mitral valve remains at the same leak and no more. Pushing a follow up open heart surgery off until he is older, bigger and stronger.

We also see the "hearing" folks there tomorrow at 9am to evaluate if Tommy's left ear tube needs to be replaced. It fell out a few weeks back and we thought he was fine. However our pediatrician is wise and sent us back to Children's for 'preventative' conversations. He feels we should replace the tube to prevent future infections and improve Tommy's hearing. Without the tubes Tommy was hearing at 65 decible levels which is very hard of hearing.

Thankfully Grandma Sue and Papa Bill are meeting us at the Hospital to take Liam for the day. That is a huge blessing. They are even treating us to a homemade corned beef/cabbage dinner! Yippee. We will post more when we return from Children's.

Two adorable kids

Hannah turned 15! Okay, it was a couple weeks back but I'm just now getting caught up on posts. She is one beautiful girl. Rides her horse often, gets great grades, torments her younger brothers and helps when asked. Happy birthday Bananna.









And what little boy wears 'fur' better than Tommy? Go eskimo boy! Off to developmental group therapy in the snow.

Third swallow study

My cooler was packed and ready to head to the hospital. Taped inside the lid was our stickers that show what my 'current medications' are. We just peel one off and hand it to the nice nurse so she doesn't need to write down all my meds.. and she gets their names spelled correctly with the right strength and dose. Of course "thicken up" can, my nosey cups, my honey bear with the straw, a bowl of cherrios w/milk, and mandarin oranges (mmm).

And a truck. In case I get bored.

The swallow study is done at our local hospital which is a lot closer than Seattle Children's. The therapist mixed barium into all my munchies and I tried my usual best to eat them without choking or aspirting. This was my third swallow study and it showed the best results. I ate mandarin oranges with a lot of extra juice and didn't aspirate! And I ate cheerios with milk and didn't aspirate! And then mommy pushed the envelope a little with a nosey cup and down the hatch that thickened milk went and I didn't aspirate!

I got REALLY tired of the lights flipping on/off to see the 'swallows' on the big picture machine. AND the highchair was for really small babies so my bum didn't fit onto it and my feet were all dangling. I couldn't get comfy. So I decided I was done. Mommy sang more songs and tried to get me to change my mind. Mommy, the therapists, and the dr talked a whole bunch on how they wish I wasn't done. So I yelled louder to remind them I said I was done. They understood.

On the way home mommy was saying 'hooray' a whole bunch. I don't think she ever thought I would be able to drink orally. Now she thinks my gtube may have an end to it.... probably summer time? I will start trying to take my evening milk by mouth. Last night I drank 6 ounces.... tonight I would have nothin to do with that cup. Mom is persistant though. Tomorrow night she is going to try again. Stay tuned.

Mommy's day out

Mommy escaped. She got out of the house all day Saturday. I think Grandma helped her!

They both were really happy after taking a quilting class on Saturday. Huge thanks to our daddy for having fun with us.

Mommy hasn't used her sewing machine out for over three years, so she spent awhile with the instructor tunin' ol bertha up. She really likes her quilt, it's for my brother Liam.

Here is mommy's quilt block in the works.... there are many more to this one.

Thank you Grandma Sue for getting mommy outta the house for something fun. It was a wonderful day.

Two little cuties needing your prayers

Our sweet little twin friends Halley and Avery have been back in the hospital for awhile now. Their health is complicated with a form of mitochondrial disorder. Stephanie and Bobby enjoy reading positive and uplifting encouragement. Perhaps you have the time to comment on their caringpage. We all know how tough it is to be in the hospital for so long and daily battling anxious hearts over diagnosis. This is one amazing local family! If you find that you can donate even five bucks, there is a way to do it on their page. Sincerely they are in need of our support.

http://www.carepages.com/carepages/HalleyandAveryBrooks

What works for us Wednesday

Honesty.

Hey, it's been one LONG week. Full of appointments, therapies, taxing teens and the like. Throw in there work, early release from high school and middle school, and just having a 'home' and a marriage and bam, I needed some honesty about how I was feeling.

It didn't come out in the best way.

In came spilling out during our new therapy session for Liam's speech today. It just came out in a crying mess. Which is usually the way this mommy handles honest communication about her feelings of exhaustion and worry. A stream of random comments and sobs. This poor therapist had to listen. Heavy sigh.

Honesty CAN be the most effective form of communciation. It leaves nothing to be 'read between the lines' or left for someone's imagination. Just telling someone how you honestly feel saves much time and many hurt feelings in the end. Sharing honestly about where you are in life can relieve much from a heavy heart.

I shared with this therapist that being alone with Liam made me realize just how silent he really is. Apraxia of speech has really startled me. I'm scared for him. And it isn't until I'm not around Hannah/Nate/Tommy talking incessantly, that I realize just how silent Liam really is. It hit me like a brick. And all of the exhaustion of the week and the anxious heart that I have with Liam's speech progress.... just came spilling out.

She offered good advice. SLOW DOWN. So I did. I cancelled tomorrow's sensory play group and although it is a great group session, I already feel some of the 'space' that I needed back in my routine. Deep breath.

What do you want to honestly share with someone? It will lighten your load. It worked for me today. And sometimes, I need to take it day by day.

Looking ahead to the week

Crazy making schedule this week:

Monday: Take Hannah and Nate to school. Take twins to developmental therapy. Fetch Hannah and Nate from early release, grrr. Naps all around. Tommy to eye doctor. Hannah to horseback riding lesson. And one tired mommy to PTSA because she was not too bright when she volunteered last fall to be their treasurer.

Tuesday: Everyone to school. Mommy to work. Checkin at St Joseph's for swallow study for Tommy at 1:30. This will be the third swallow studay and hopefully he has a nice SAFE swallow. Speech therapist at home in the afternoon with Liam. Nate to 4-H in the evening.

Wednesday: Liam starts speech therapy at the private SLP. Then everyone to school. And mommy to work. Dentist appointment for the twins in the afternoon. Every 6 months they get their lil' baby toothers looked at. In the evening our DsOutreach is planning a financial seminar on planning trusts and such as parents of special needs kids. One of us is hoping to go.

Thursday: Sensational toddlers therapy in the morning. Mommy is hoping to work in the afternoon.

Whew! Note to self: try to space appointments and therapies out just a tad bit more.

Nutrition appointment

Friday was our regular appointment at the health department for nutrition. Since Tommy has a feeding tube we check in with them to monitor his weight. 26 months old and he weighs a little over 28 pounds and is 33" tall. On the weight chart he is about 50% and length he is 5%..... both on a 'typical' chart, not the Ds chart. Good news! He is a little tank. And for having Hirschsprung's disease he is doing very well.