Monday, October 27, 2008

Welcome to Holland

When Aubrey was first diagnosed in March - I was given this story. I ran across it again today and thought I'd post it since it's such a great analogy and it served as a great reminder for me today to get my attitude back on track!

You see, despite having a wonderful time at the Ollie Web Dance on Saturday I did have a bit of sadness afterwards. It made me think of what Aubrey will be like as an adult. It pained me to think about the severity of her diagnosis. A large majority of the individuals at the dance had Downs Syndrome. They were such a joy- talking, interacting, laughing, dancing. It hurt to think that the majority of people present would be much higher functioning that Aubrey will ever be. I know that sounds defeatist and negative -- but it's the truth. It's not wrong or bad it's just our Holland.

Anyway - before I get all whiny (probably too late) - - here's the real reason for the post.....

WELCOME TO HOLLAND
by Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.


After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Saturday, October 25, 2008

Ollie Web Halloween Dance

Tonight was a great night!

I coach the University of Nebraska-Omaha Dance Team in my free time!(ha...what free time!)

Anyway - tonight the team, along with Aubrey, Molly and I helped with the Ollie Web Center's Halloween Dance. The Ollie Web Center is an organization for the advancement of children and adults with disabilities. There were over 150 individuals with varying disabilities that attended the event. It was a BLAST!

We all dressed up - I was a baseball player, Aubrey was the cutest ballerina ever and Molly was a little duck!

My dance team members had fun mingling and serving food and they really did a great job of keeping the dance floor active all night. They spontaneously started a limbo line and a congo line and were teaching a few dance moves (and learning a few too)! One of my dancers said it was the most fun dance she had ever been to over all the high school and wedding dances in her life!

It was so fun. I can't wait to get the pictures up!

Well - I'm wiped out - I'm going to bed!

That's all for now.

Friday, October 24, 2008

Free...she's free at last!

Sorry to keep everyone up to date and then just drop off like that!!

The last 3 days have just flown by. After Aubrey continued to eat and drink with no problems and had improving blood results - she was finally released just before noon yesterday - - YEAH!

After nearly 4 days of the hospital - we were all ready to go back to life as usual.

After all the tests and discussion - it was decided that Aubrey had a mild case of pancreatitis. There seems to be some disagreement among the GI doctor and the Neurologist as to whether the depakote(anti-seizure medicine) caused the problem or not. They cannot prove that it was the depakote for sure, on the other hand they cannot rule it out completely either.


Regardless - -Aubrey will no longer be on Depakote and we'll try and control her seizure disorder with Topomax. Aubrey will be followed closely by the neuro as we do not want her to start having seizures again. It's been 2 months since she's had one - and she's just finally gotten her confidence back and has improved on her gross motor skills - - we want to keep going forward - not backward.

The other change that will come out of this hospital visit is Aubrey's diet. Because Aubrey's pancreatits impacted her lipase levels (an enzyme that breaks down fat) she will need to adjust her fat intake to allow her pancreas to fully heal. It was explained to us to be a 2-3 month process. For this first week out of the hospital - Aubrey will be limited to eating only 5 grams of fat for the entire day. She will then go in for more blood tests and if they continue to progress - she will slowly add in more fat week by week.


For comparison purposes - she usually drinks a cup of whole milk with calorie supplements 5-6 times a day and each cup of whole milk has 5 grams a fat alone!! So to keep it to just 5 grams for the whole day will be a bit of a change. We stopped by the store and stocked up on fruit, veggies, and anything with a Fat Free label on it. She doesn't seem to mind the change so far and already loves the Fat Free hotdogs!

She's back to her smiley self and we're so glad!

Thank you again for all the family and friends that helped us get through this week. I don't know how we would have survived without your help. It's such a blessing to have a great support system both near and far away.

Thanks again.

That's all for now.

Tuesday, October 21, 2008

What a difference a day makes!

Okay so here's the update.

The CT Scan results came back and by 8:00 pm - we finally had an update from both her neurologist and the GI specialist!! It was the longest day of waiting - but I feel much better with having a plan.

There was nothing troubling found in the CT scan(yeah!) - in fact the pancreas wasn't even too inflamed so Aubrey is lucky that she's had a very mild case of pancreatitis.

Throughout the day Aubrey gained back her energy and smiles and is doing so much better. In the words of her neurologist tonight...."I thought I was supposed to see a sick child....where is she?"

She received the okay to try liquids so her sippy cup is back in action! And we should be getting some food for her very soon.

The GI specialist gave the okay for her to be removed from isolation status - - I think I'm most excited about this. We'll actually be able to leave the room and take a walk. So after we give her a little food - which I pray she takes down no problems - - we'll take a trip to the big play room!

As for the treatment plan - she will start up again on her Topomax for seizure control and we'll monitor closely with her neurologist - we'll need to have a check-up with him first thing next week. The GI doctor would like to keep her in the hospital for 2-3 more days to monitor her food intake and check her blood and enzyme levels. Once he's satisfied that she can hold food down and her levels trend back in the right direction - he'll send her home. He did mention that Aubrey will need to follow a strict low-fat diet for a few months. This made us laugh - because until now - we've been advised by a nutritionist to pump extra calories as much as we can with butter, cream, higher fat items due to her low weight! Oh well - maybe if Aubrey is on a strict diet - she'll help me with mine and I can start to lose that baby weight!

So it sounds like more waiting - - but at least we can venture out of the room and not be hooked up to the IV anymore - yeah!!

What a difference a day makes.

Thanks again to everyone for your support. Aubrey especially loved all the visits and gifts she received today.

Tonya and Rebecca - Thanks for dropping off lunch and movies!

Delany, Kerri, and Evelyn - Thanks for the laughs and the ladybug toy! I hadn't seen Aubrey laugh for over 3 days - amazing what another Angel can bring out! Sorry our visit got cut short.

Beth - Thanks for supper and the visit - I'm so glad you had a chance to meet Delany and her family. I only hope that Aubrey can grow to be such a kind, well behaved, smart girl like Delany - - isn't it great to see the possibilities in real life!

Brian and Heather - Thank you for the plant and stuffed animal! I know you wanted balloons - but the Big Bird pot is pretty darn cute! I wish you lived here too - but someone has to keep South Dakota's District 32 in order!

UP Marketing and Sales - Thank you for the balloons and stuffed animal. Aubrey loved them both.

Well - - Aubrey is zonked out so I might take this opportunity to catch up on some sleep myself.

It's still amazing to me what a night and day difference 24 hours can make.

That's all for now.

Still in the hospital...still waiting

It was a long night - she slept maybe 4 hours total. With her sleeplessness coupled with the nurse checking vital signs every 4 hours - it made for a pretty restless night. What I would give for a nap and shower!

Anyway - right now Aubrey and I are just sitting in room 412 waiting for the next experiment to be done.

At about 9:30 this morning - she'll take some chloral hydrate to sedate her for the CT Scan. The CT Scan will look for any congenital defects to the pancreas or the area around the pancreas. It will also check to see if there is any internal trauma from a fall she had last week at daycare. They are hoping they won't find anything on the CT Scan - but need to do it before they recommend any further treatment.

I'll let you know - how it turns out.

In the meantime - - I want to thank some people for helping us out.

Beth - - Thank you for picking up Molly from day care and spending time with her last night until Chris got home! Sounds like she fits in well with the Weist clan!

Ardys - - Thank you for driving down from Aberdeen, SD to help us manage this hospital stay while clearing out and cleaning our house for this Friday's closing date. Not sure how we'd be able to do it with out you.

Mom and Dad - - Thanks for helping with the move this past weekend and calling the church for us because we're too stubborn to do it ourselves!

Rebecca and Bernie - - Thank you for helping us move this weekend as well! We still owe you a supper!

Pastor Helvig - - Thank you for arranging help on Wednesday night to move the rest of our items to storage - -it is greatly appreciated.

Todd/Cindy/Melissa - - Thank you for being awesome and supportive throughout this and all our struggles with Aubrey.

Thank you to all our friends and family for the thoughts, prayers, emails, cards. It means a lot.

Thanks and - they are here now - - gotta go!

Monday, October 20, 2008

Aubrey Update

Well - everything is pretty status quo here.

Aubrey is still hooked up on an IV for fluids. She hasn't had any food or drink - hopefully she can start those tomorrow.

We have talked to the GI specialist and he's put a hold on 3 of the 5 medicines she typically takes as they may be causing and/or aggravating the pancreantitis. He ordered a CT scan and additional blood work. The CT scan will be tomorrow under some anethstesia so Aubrey can't move.

She's still quarantined to her room. Her mood is pretty good considering the fact that's she's been out of the crib only a few time today. We gave her a bath and then I've had to cuddle a couple of times with her!

I think tomorrow will be much better - we'll hopefully get more answers, try some real food and take her for a walk in the hallway or go play in the toy room.

Thank you for all our friends and family for helping with Molly!

That's all for now

October Surprise...and its not a good one.

While politicos are determining what the "October Surprise" will be for this Presidential Campaign....the Gosch family knows what our October Surprise is......Pancreantitis.

At 1:30 in the morning we learned that Aubrey has pancreantitis.

Aubrey started vomiting at 6:00 am yesterday and could not hold anything down the entire day. We thought it was just a flu bug but after 12 hours of not keeping any liquids down we brought her to the ER for fear of dehydration. At the ER they ran some blood work as a precaution. It was during these blood tests they found indications of problems with her pancreas and suggested she be admitted to the hospital for more immediate care.

They are still trying to determine how Aubrey got the pancreantitis - but the likely suspect is her anti-seizure medicine Depakote.

We're basically playing a waiting game. Until Aubrey is seen by a G.I. specialist she can not eat or drink anything. Therefore she's stuck on an IV in her hospital crib. We're also waiting for the Neurologist to provide some ideas of what to do for the siezure control if in fact the Depakote is causing Aubrey's health problems.

Ahhh - it never ends!

Thank you for keeping us in your thoughts and prayers - we'll keep you posted.

Tuesday, October 14, 2008

Bath Time Follies!

Just thought I'd do a quick post about the girls and their bathtime last night. Usually I give them separate baths - but last night I tried giving them one at the same time.

Aubrey started first and then after I washed her hair I let most of the water out but left just enough for Molly to lay in.

Oh my - what a hoot! I've never seen them interact with each other quite that much. They were both laughing so much and so loud. If you really get Aubrey going - her laugh is something pretty special - but Molly she's only 5 months and her giggles have been pretty few and far between and they are usually pretty quiet. Not last night. She had a great time watching Aubrey bop around the tub and thought it was hysterical when Aubrey would crawl around/on her. Aubrey would then feed off of Molly's laughs and would get even more excited.

It was so cute and really more efficient too!

Thats all for now

Friday, October 10, 2008

Are you ever ready?

Last night we had the opportunity to meet up with my cousin Kelly and her husband Matt. They are expecting their first child in January. We're very excited for them. As fellow parents - - I think it's easy to get excited when others join the club so to speak.

Kelly reminds me so much of myself just two years ago -- before Chris and I had kids. I had never changed a diaper, really didn't feel comfortable around babies, and I had no clue what to do to be a good mother.

As she was expressing those same feelings last night - - I gave her the proverbial "it'll just come to you naturally" line that I was often agitated about when I was pregnant the first time! But I guess it is true and now that I've lived through it - - there really seems like no other way to describe it other than that. No matter how many books you read, or people you talk to, or how many TLC shows you watch - - you can never really feel ready. But despite all that - it does work itself all out.

I guess the same has been true for Aubrey and her Angelman Syndrome. Just as no one seems to feel ready for parenthood in general - - no one is ever ready to be a parent of a disabled child. And once the diagnosis comes and all the articles have been read, the advice has been mulled over, and the therapies begin -- you're still not "ready." But that's okay too. I realized last night that the same message I gave to Kelly about her apprehensions of welcoming a newborn into their lives I need to remind myself of - - "it'll just come to you naturally"

Kelly and Matt will be great parents and they will beautifully navigate through the joys and trials that parenthood brings just as Chris and I will continue to be great parents to Aubrey and Molly - no matter what their differences may be.

So while you may never be fully "ready" at least it's comforting to know that you can still be okay!

That's all for now.

PS - - Kelly and Matt - it was so great to see you last night. I can't wait to see if it's a boy or a girl!

Monday, October 6, 2008

Campfires, Pumpkins and More

Well -we had quite the weekend!

FRIDAY
On Friday night we hosted our last Friday Night of Fun at our house before we have to start boxing things up for our move. It was great. We had some friends over for pizza and then Chris even brought out the fire pit and we roasted marshmallows and talked until all the kids fell asleep. Other than the fact that Jeremy and Beth weren't there - it was a perfect evening.

SATURDAY
The fun didn't stop there. My parents came down from South Dakota for the weekend too. My mom can go about 3 weeks without seeing Molly and Aubrey so she was due for a grandkid fix. We had a pretty lazy Saturday of watching football, playing with toys, having bathtime, and a trip to Target. So funny how life changes with kids and a trip to Target is "the" event for the night!

Also funny how we never seem to leave the toy aisle without a little something for the girls. Aubrey really lucked out this time and received an early birthday present. It's a table for her to play at. It's a perfect height for her to pull up on her own and practice standing while playing with toys. Here's a link to a video of her standing up to it. Thanks GRANDMA!!!

http://www.dropshots.com/egosch#albums/Videos



SUNDAY
If that wasn't enough for one weekend we went to Vala's Pumpkin Patch on Sunday afternoon. I wasn't quite prepared for how big this place was! Wow! They had hay rides, petting zoos, a train, multiple food venues, and a 5 acre corn maze. None of which we really participated in!! I think the girls will get way more out of it in a year or two.

Our basic goal was to try and get a good family picture - a feat which is nearly impossible with how fast and fidgety Aubrey moves and how young Molly is - - but we tried anyway - - here are the best ones. Note it's almost better when we don't know that there's a picture being taken from behind!!


After about 2 hours my parents had to leave to start back home - - and we were just about to leave too - but we thought we'd go check out one area that we hadn't seen yet. So glad we did or we would have missed Aubrey's favorite part!! She loved the "Pumpkin Pillow" which is basically a huge air-filled surface that kids can jump on trampoline style. She was giggling the whole time!! Here she is on it:

It was a great weekend of campfires, pumpkins and more!
- That's all for now.