Archive | June, 2010

Rescheduled

So the date of the procedure/surgery has been moved because central scheduling forgot to get confirmation from the GI dept and the surgeon is not available on July 2nd.  The date has been sadly moved to September 10th.  I have pleaded with all of my sources at CHW to please help me get a sooner apt, but they can’t magically clear a surgeon’s schedule.  So we wait.

However, when our speech therapist came over yesterday, we sat little miss Gabi in her high chair and handed her a biter biscuit and she instantly brought it to her mouth and took a bite.  After getting passed our initial shock, Sheila and I both cheered her on and laughed.  She NEVER puts food in her mouth. Toys, her blanket, fingers, toes go straight to her mouth, but never food.  So she was pretty shocked herself when all the sudden she had a crumbly cookie in her mouth.  She enjoys tastes of food so much, but once it gets to the back of her mouth, she gags and throws it up. But she did OK with the cookie, she worked through all of the gagging.

I hope everyone is having a nice summer and enjoys their 4th of July!  I know we will!!

Love,
Teri

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Surgery scheduled and announcing West 3 grills

Gabi is doing really well. She is getting so strong and laughing more.  The eating is still a huge challenge.  She takes nothing by mouth and one of her docs recently told me that she will probably have the G tube in until first grade or so.  I was so disappointed. But I know that using the G tube is really keeping her alive, literally. The hope is to get all of the anatomical issues under control in her throat area and then start really pushing eating by mouth and then over the years use the G tube less and less. Right now, she is still on continuous feeds all day at 76 mls an hour. She is hooked up to the pump almost all day.

So-after all her docs have conferred, they have tentatively scheduled many procedures for her on July 2nd.  She will be put under general anesthesia and the GI team will do their upper GI tests, ENT is running many tests to investigate the muscle strength of her upper pallette, her left vocal chord, the arytenoids. Dr. Sulman (ENT) will also be able to look more closely at the amount of scar tissue and be able to assess whether they can remove some or if it will be better to leave it alone. She has many issues going on in the back of her throat and into her esophagus and until they can get a better look, we don’t even know what we are facing.  Dr. Rao from cardiology also wants to do an ECHO of her heart while she is sedated.  Usually this would be an outpatient procedure, but with her cardiac issues, she will need to spend at least one night in the hospital.

I am certainly not looking forward to watching her go through this, but I am looking forward to getting some answers.

The G-tube extension is her favorite thing to chew on

Gabi's big brother climbing trees.

Gratuitous picture of Thomas

Ronald McDonald House Donations

We are going to drop of the RMH donations to them this weekend.  They are going to take our picture and have us talk to the PR rep at the house.  We are so excited to be able to give back.  THANK YOU FOR ALL OF THE DONATIONS!

Now, for the really exciting things!!

After dropping our items off to the RMH, we are heading over to our dear friends, the Buchmann’s, to finalize a project.

West 3 grills and spice rub will up and running soon!

Many of you know the story of how we met the Buchmann’s.  Their little daughter, Carsyn, was next door to Gabi in the hospital for many months. The unit we were both on was West 3 (the Cardiac ICU) at CHW. Carsyn devastatingly passed away  after a 6 month fight for her life.  Our friendship with the Buchmanns is lifelong; our bond is unexplainably powerful.  Chris and Ethan both enjoy cooking so they have developed the West 3 spice rub.  Many of you have already tried our complimentary jars, but they are ready to start selling it and take over the world!

Along with this, our dear friends and neighbors own a metal works business and Ethan and Mike joked about making the world’s best grill.  Gabi’s 1st birthday party was the impetus for this grill so that Ethan could make hundreds of ribs.  I, his practical wife, pleaded with him to not cook at the party and just enjoy ourselves.  SO- he comprised and decided to make his hundreds of ribs at our block party a week following.  After Mike put in many hours of overtime, the grill was ready to go the night before the block party.  Oh and my favorite part is that the grill converts into a fire pit!  Not just any fire pit, the best and biggest fire pit ever!  Every male in the neighborhood circled the grill for hours.

3 great friends + a premium custom made grill + the best spice rub ever made = West 3 Grills

The grill is seperated into 2 sections and can hold 18 slabs of ribs!

How awesome is that!

Love,

Teri

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Party pics

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Birthday party success

Gabi’s first birthday party was a success!!

I will be posting pictures soon but wanted to give a brief summary of the day.  We raised over $700 for the Ronald McDonald House along with tons of toiletries, lots of toys, books, puzzles, and beautiful handmade items for the families that are staying there. We are planning our trip to Milwaukee when the manager of the house wants to get a family picture of us for their wall.  We are super excited and think we will continue to collect for them!  It feels great to give back!

The weather held out and we even commented that the threat of storms and the sunshine peeking through the clouds was very symbolic of our past year.  Just when we thought, here comes the terential downpour, everyone pitched in to grab the things that couldn’t get wet to put them under shelter but then the wind would slow and the sun was able to give us a ray or 2 of sunshine.  Just as when Gabi was so sick and we prepared ourselves as best we could for the worst, God gave us His good graces with the sunshine of her smile and recovery. Gabi was in great spirits on Saturday smiling and and even gave one of our favorite nurses a good old vomit just to show off. The kids discovered thousands of tiny toads and even a few snakes to collect in the forest preserve.

Although we missed some of our great friends and relatives who were unable to make it, others showed up that brought tears to my eyes.  Thank you all for driving from Milwaukee, Oswego, Colorado and even Winnetka was a bit of a hike. And THANK YOU to our INCREDIBLE neighborhood for pulling this all together for us.  We could not have done without your help. From where we were a year ago to today, we are most thankful that God brought us to this wonderful location. “Mayberry on steroids” has been its nickname and it couldn’t be more true.

As always, thank you to Ethan’s aunt and uncle for their continued blessings and for the beautiful flowers and balloons delivered. This is a poem written by Ethan’s Aunt Meg that I have read often.  It is one of my favorites from her book entitled Words Collected on the Road to Silence: Messages to Me by: Margaret Coyle

This Day I Know
by: Margarent Coyle Irsay

There is an infinite flow of blessings pouring down, and around us, calling only for our gratitude, not as payment, but as the natural response to this gift of life.

It’s a blessed practice to cultivate the awareness of our part in this dance.  As we allow ourselves to be moved, we’re carried through the dream of illusion into the light, where joy is clearly and fully present. Whatever sickness is in us, the remedy is there also.  Everything is inside of us right now.

By the light of truth, I see my real Will.  It’s the Will I share with God, and it’s prefect. I put down every argument today, and move into full agreement. I know my intention is all the Spirit requires to lift me out of confusion and tune my focus to real vision. As I move, I know I go with God. Even when I forget, I know God holds me closely. My prayer to know is answered right now, even when I fail to listen. This is my confidence. This is my ground.

I thank God for everything, in every form, kisses and crashes, wonder and worry, friends and foes, hurt and healing. It’s all joined in the name of Love. It’s my Will to return completely to this knowing, by forgiving everything. I see It’s all unfolding miraculously before me, after me, and through me. My only true response is gratitude, and so I thank God for It All.

Gabi is doing really well. We are waiting for the GI docs and ENT to schedule an investigative surgery to find out what is going on with her damaged vocal cords, misaligned arytenoids and large amounts of scar tissue from being intubated for lengths of time. This will be schedule sometime in July and Dr. Rao would also like to do an Echo of her heart just for a check up.

If anyone has any pictures from Gabi’s birthday bash, please send them to us. We would be so gratuful.

Love to all and happy happy summer!

Teri

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Party will be today

We are going to go for the party today (saturday).  Let’s hope for no rain.!!

There is a large shelter area and we are putting up another large canopy tent, so there will be shelter if it does rain.

See you all soon!

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