Got the phone call

I'm not even sure what to say.  Eliana's GI doctor called.  I have to say again what an incredibly kind, caring and patient man.  I appreciated that he took the time to call, to explain and to answer questions.  I never felt rushed or silly at all with my questions. 

Even though I knew the call was coming, it still is hard to have a doctor calling with test results.  I was able to handle the call.  I've handled the day well (I think).  It hits me though in pieces. 

"Mild changes were observed in the tissue that is consistent with celiac disease"

He explained that because her numbers were so very low and the changes so mild, that it is likely that we've caught it at the very beginning.  "It has to begin somewhere" and it looks like this is it.  There is a "remote" possibility that this may not be celiac, but he didn't think so (and honestly, neither do I).  In my heart, I've just felt like this was coming. 

We have two choices:

      1.  We can accept the diagnosis and begin treatment.
      2.  We can wait 6 months and do the blood test again

Dr U explained that there is no urgency to treat this based on how early it has been caught.  Not treating it now will not produce any permanent damage to her.  Any damage that might be done with celiac's disease is reversible.  If we don't treat and begin to see symptoms earlier than 6 months, we would need to reevaluate.  Based on her results, we will want to have the rest of the family tested as well.  Either now if we are going to begin treatment for Eliana or we can wait 6 months to see her results and go from there.

So, there you have it.  Eliana has celiac's disease.  I hate writing that out.  I hate seeing her name associated with one more thing.  I hate diseases that strike children. 

Here are some of my thoughts on this.  And yes, some if it is going to sound whiny even though I know this will all work out.  I know God will equip us to handle this.  I just wish we didn't have to, kwim?

I know there are gluten-free products out there.  They are also expensive and in small packages.  (Maybe there are resources that I'm not aware of though!  I'm hoping!)  I'm going to have to get really creative in working out our food budget to handle this.  Not to mention getting creative in the kitchen.  Have I mentioned that I really don't enjoy cooking?!  LOL  Not sure why God keeps giving my kids (and me) food challenges!  And different ones at that!  I was wondering today if this is a small piece in a big picture that I just can't see yet.  He is caring for us in this way and maybe one day I will understand. 

Here is the other piece of the puzzle.  I think in some ways, I'm probably more aware of the challenges we will face due to all that I have learned with managing Joshua's diabetes.  Eating foods - or not eating them - can just be tough!  Without even going through it yet, I know it is just going to be hard. 

Food is such a part of our culture.  Its part of almost all that we do from meals to parties to church and even our homeschool outings.  Its rare that something does not have food as a piece of the event.  So many foods have gluten in them.  So many.   
Since Joshua's diagnosis, I've become so much more aware of food.  I can pick up and eat what I want whenever I want to.  I don't have to worry about what is in it or what it will do to my body.  If I'm hungry, I can eat.  It just won't be that easy for her.

I wonder not just how this will affect us in terms of cooking and preparing food at home, but how will it affect Eliana's life.  She already faces challenges that most of us don't have to deal with.  I just don't want this to be one more obstacle for her in finding her place.  I don't want this to be a barrier to her being able to go places and do things.  I just don't want this to be another way in which she might feel "different".  Now, I know that different can be good.  There are differences that I see in her that challenge, encourage and inspire me.  There is a purity of her heart that truly is a gift.  I think most of us have experienced times though when different is just plain hard.

Birthday parties,  Potlucks.  Snacks at church.  Eating out.  Summer camp.  Co-op.  And more.  Will she be included or will it just be a burden to try to provide foods for her?  Will she resent not being able to just eat what she wants?  I know that has been really hard for Joshua.  How hard will it be and will she even understand why she can't have goldfish?  Or a variety of other foods that we've worked so hard to get her to eat.  She is still so very young.

Want to hear something ironic?  I *love* carbs!  Maybe that isn't ironic as it's probably true of a lot of us.  I have 4 or 5 50 pound tubs full of various wheat products that I bought in bulk.  I use this to bake and cook with - bread and muffins mostly.  Yum!  Now, I know I can make these without gluten, but there will be a learning curve.  (And a cost curve as buying a 50 pound tub of wheat is much cheaper!)  I know, I'm whining again.

As I have learned over the last several years, there are times when you just need to mourn - and then move on.  This is something to mourn.  The loss of a piece of normal for our sweet little girl.  I know it could be worse and I'm thankful for something that is managable.  I know God will use this to teach me.  I pray that He will use this to help mold and change all of us so that we are more like Him. 

I'm not sure where we will go from here, but we're leaning toward waiting.  I can use that time to learn and prepare.  We would love your prayers, advice and insight.  Hugs are great too!  Thank you friends for holding up our precious little girl.

With love
Leslie

A glimpse of our day

Today was a long day, but one covered with prayers.  Thank you friends!  I apologize that I have not been able to make phone calls or talk with people.  Eliana has just needed my full attention all day long.  The rest of our family has been wonderful to let her have that too!

Our day started early.  I woke at 6am to get ready and then woke her up at 6:30 so she could have some juice.  She really wasn't ready to get up and only drank a little bit.  I did want her to have that though as I knew it would be a long time before she would have something again.

I kept Eliana upstairs thinking that being away from the kitchen and any thoughts or smells or sights of food would be a good thing for her.  While I was down getting dinner ready, Rebecca hung out with Eliana - and painted her nails.  (Its a little hard to see as it is mostly clear with glitter.)  She was happy to show them off.

Shortly after 8am, we headed out.  I wanted to give us a little wiggle room in getting to the hospital by 8:45.  We arrived and found a parking spot close by and went to check in.  Check-in was very quick and then it was time to wait.  We saw people come and go.  Mostly we saw people wait.  And wait.  I was thankful we have an ipad.  It is wonderful for keeping Eliana entertained!!!

At about 10:20, we were called to go back.  We saw her doctor and talked with him a little while.  (Dr. Ulshen for any who are local and need a GI.  He has been wonderful!)  She was given a gown to wear - and she was not thrilled about wearing it!  She was also not excited about having her vitals taken.  Thankfully, she allowed bear to take a turn first today and then she would take hers.  (She is not attached to one specific animal which is why this has varied from one visit to the next.)

Still playing with the ipad, but also a new toy (to her) - my camera.  After I had pulled it out to take some pictures of Eliana, she wanted her turn.  And did she have fun!  She took a lot of pictures.  Many of bear.

Some of the room.

One of the anesthesiologists.  I talked with her about how Eliana was typically a hard stick and they took good care of her - and did not have trouble!  Thank you God for that answer to prayer!

We had a kind and fun nurse who thoroughly enjoyed Eliana.  (on the right in the picture)

Many of her pictures are wobbly, but I'm sure she will learn with time.  It's moments like this that I LOVE having a digital camera!  No worries about wasted film.  Its fun to hear her laugh, direct people to look or smile and to just experience her joy.

She has a cheesy little smile that she gives when I ask for one for a photo.  Still really cute though!

Soon it was time to go back.  Eliana was really unsure about a ride on the huge bed.  The doctor quickly suggested that I carry her and our things got a ride instead.  I am thankful for the many people who work in the medical field that are sensitive to the patient.  I am thankful for those willing to do things a better way instead of the "prescribed" way. 

We decided to try just the anesthesia through the mask.  It was an option to try the oral first - but it is bitter tasting and adds one more drug to the system.  I held Eliana while they put the mask on her.  She cried and pleaded.  It is so hard to hold your child down when they just want you to rescue them.  Thankfully she was out very quickly.

It was then time for me to leave and wait on my own.  Thankfully it wasn't too long before I was called to the consulting room.  I have to tell you that this made my heart sink.  I remember being told when she had heart surgery that being called to this room could mean that something had gone wrong and they would talk with you privately. 

Thankfully, all had gone well.  Dr. Ulshen explained what he had done and had it all written out for me too!  There were even some pictures taken during the scope.  He said that everything looked normal.  (Don't get too excited yet!)  The biopsies will be sent out to be tested.  We should hear something within a week or so.  I'm hoping (kind of) for sooner. 

The blood tests give reason for hope - her tTG numbers were only slightly elevated.  This makes me wonder if maybe it is just being caught early (which would also explain why we haven't seen a lot of symptoms).  It could be too that this means there is no celiac.  The other piece of the test EMa was positive.  This is the one that was the red flag.  He said this one rarely has a false positive. 

If she tests positive for celiac, we'll have more appointments.  If she doesn't, this is probably something that she will just have to be screened for periodically.  Dr Ulshen was so very patient in explaining things to me and answering my questions.  Did I mention that I really liked him?

Out to wait a bit more and then I was called back.  I was stunned to see Eliana's eyes open when I walked in!  Still really groggy, but definitely waking up.  Isn't she tiny in that big bed?

I had been warned about the effects of anesthesia thankfully.  Eliana was very fussy.  Very.  She didn't want anything.  Didn't want to change into her clothes.  Didn't want to be picked up.  Didn't want anything to drink.  Didn't want anything removed.  She was pitiful.  Did manage to get her out of there pretty quickly as she also didn't want to be there.

She fell asleep on the way home, but awakened when we arrived.  She then had a hard day.  She was fussy.  I fed her a little bit.  Started with jello, juice and water.  Moved on to applesauce and pudding later in the day.  I had been told she might have a sore throat.  She also was often just trembling in my arms.  I held her a lot of the day.

Finally took her up to nap and she slept in our bed beside me - very fitfully for several  hours.  She woke up hot and had a temp.  The first thermometer said 103.  I took it again with a different one and thankfully it was just 100.  Still trembling and fussy.    She still felt pretty crummy. 

Ate a little bit and then I took her upstairs to watch a movie in bed.  She calmly watched it and I think felt a little better by then.  It didn't help that I then needed to remove the leads from the hospital.  Roger went out to get baby oil as I had been told that would help.  A little bit, but those things are really stuck on!!!  I don't know what type of adhesive they have on them, but it is strong!  She cried and cried while I was taking them off, even though I was being very gentle with her.  Being a parent is just not easy sometimes. 

I gave her a quick bath to try to remove some of the oil and she again started trembling all over and crying.  It is hard seeing her so miserable.  It was bedtime by then.   I gave her a snack and then we brushed teeth and read some books.  Said prayers and gave hugs.  Time to go to sleep.  I love putting her to bed.  It is a sweet part of the day.

Today was a good day and also a hard day.  In it all, there is so much to be thankful for.  God answered so many prayers.  This has gotten long and is probably way more than anyone wanted to know.  LOL

Thank you for your prayers.  I will post the news when we get it.  Still hoping for the best, but trying to prepare my heart for the worst. 

God is good!

Blessings
Leslie

For those who appreciate specific requests

Hi Friends,

Thank you for your prayers for our sweet little girl.  I take her to the hospital tomorrow morning early. I'm probably going to try to wake her up early so she can have something to drink. She has to stop all fluids by 6:45 am. The procedure is 4 hours later. I'm hoping I can keep her distracted for that long!

She will be having an endoscopy to test for celiac's disease. She will be under general anethesia. Since she has done fine with this in the past, I'm really hoping it will be no problem for her tomorrow!

Here are a few requests.

1. That they would be able to get an IV in without problem. She is a "hard stick". They had horrible troubles with this when she had her first surgery and had to do cut-downs on her wrists. I really don't want that to happen to her again.

2. That being under anesthesia would go well for her. That she would go under easily and suffer no adverse effects from it.

3. Clear results. We will probably not learn anything tomorrow. The surgeon seemed to think it could go either way. I'm trying not to get my hopes up, but still would love for her not to have this!

4. Fast recovery with little or no pain!

 

5.  That I would be aware of God's plans for *me* tomorrow.  That my heart would be open to reaching out to others.  There are a lot of people who are scared and hurting in hospitals.  I remember it well.  Just being in the pre-op area on Friday brought back so many memories.  I'm sure that tomorrow will too.  I don't want to be so focused on what is going on in my life that I miss out on something He has planned for me.

That's all I can think of. I'm expecting this to be relatively minor (compared to the other things she has been through). I'm feeling at peace about all of this, but still wish she didn't have to go through it, kwim?

Thank you for once again holding up our sweet girl!

With love

Leslie

Small update

Thank you to all who were praying for Eliana yesterday. The appointment went really well. She had brought along a little bunny that really helped! Bunny had his temp taken, then Eliana agreed to have hers taken. Bunny had his oxygen checked and then it was Eliana's turn. (Hers were 98! Love seeing those high numbers!).

No blood draw needed. That was a huge answer to prayer!

We met with a nurse to go over all the details and to sign release forms. Eliana played happily with bunny and the iPad. This is a great device for taking to dr spots!!!

Next we met with the Child Life specialist. I remembered her from Eliana's last surgery and surprisingly she remembered us. I loved how she interacted with Eliana! She talked to her and worked to try to help her understand what was going to happen. She had a little gas mask for bunny and then Eliana agreed to have it on her face. She showed her an IV lead and bag. She also sent us home with some things to "practice and pretend with" before we come back on Monday.

Last we toured the surgical area. She saw the little gowns and socks, the pre-op rooms and the procedure room. Eliana did great wi th all of this. Thank you for praying. It could not have gone better.

Requests for Monday are that Eliana can stay well. One brother seems to be on the front end of a cold. If she gets sick, we may have to postpone. I'm really ready to have this done. Also, we need to work to get her very hydrated on Sunday. She can have nothing to eat after midnight and thn cleat liquids until 6:45am. She needs the fluids to help with her veins for the IV. (I think I have mentioned that she is a hard stick.).

Sorry there are no pictures. Thanks for praying for our sweet little girl!

Blessings
Leslie

Princess Eliana goes to ...

I want to say "court".  Something fun and exciting.  Something to look forward to and dream about.  Someplace where you will be happy and pampered and loved.  Well, she will be loved wherever she goes, but this just isn't going to be fun.

We go to Duke tomorrow for her pre-op appointment.  I'm told we will be there about an hour and a half.  I know that consent forms will need to be signed.  I'm not sure if they will be doing any lab work.  I'm really hoping we can skip a blood draw, kwim?  She is a "hard stick" and given her recent opinion of doctors, this just won't endear them to her either.

In spite of signs that I'm seeing this week that she is having intestinal problems, I'm still feeling calm.  I'm honestly trying not to think too much about it or to worry.  Worry won't change anything.  She either has celiacs disease or she doesn't.  I'm just trying to enjoy feeding her anything she wants while I can.  Our diet has the possibility of changing drastically.  So this week, she eats mac & cheese, goldfish, crackers and cereal.  (She also has other non-gluten foods too!)

There is no way that I know of to explain to Eliana what is going to happen to her.  Even if I could, I think it might just worry her.  So for now, I'll carry it for her.  I think that perhaps even if she could understand that she would still let me carry the burden.  I'm not sure she is going to be a worrier. 

We would love your prayers for a smooth process today.  I'll post an update when I'm able to.  We will be going back on Monday for the endoscopy.  We will then have the results in a week (or less?). 

I would also love prayers for her health.  She needs to be in good health in order to have the testing done.  There seems to be a LOT of stuff going around now and I really don't want any of it.  As I mentioned earlier, she is having GI problems.  She isn't sick and I am just left to wonder if this is the celiacs that I am seeing.  I'll know soon enough.

Thank you for praying for our princess.

With love,
Leslie

Gingerbread and Supermom?

Sometimes I have people ask, "how do you do it all?".  The answer is easy - I don't!!!  Not by any stretch of the imagination.  Its a juggle each day trying to figure out how to best spend my time.  I've done a lot of juggling in this new year.  Still need to do some more as well.  (I'll post more on that soon.)  There just aren't enough hours in the day to get it "all" done. 

I'll give you a glimpse at what running behind looked like one day at our house. 

Each Christmas we try to do some of the same activities - things that are favorites with my children.  I think I've mentioned that I have a number of them that really love tradition.  One of their favorites is making a gingerbread house. 

Well, this year, I just didn't get to it.  I did however find one on sale - for about $2.50 - at Sam's after Christmas.  This was too good to pass up!  So we made a house in mid-January this year. 

I really didn't mind that we did it so late.  They were eager to eat it soon after making it.  I had no problem with that either.  Meant it sat on my counter for a shorter amount of time.  LOL

Everyone is happy.  It's never too late to have some fun.

Hope you are having a fun week at your house!

Blessings
Leslie

Field trip to the Art Museum

Our first field trip of the new year was to the NC Art Musuem.  It brought back memories for me.  It's been just over 4 years since I had last been here.  It was the last place that I went before Eliana was born.  When times were hard at first, I thought of this as my "last day of normal" - before my world was turned upside down.

I wish I had known then what I know now and perhaps it wouldn't have been so hard.  Of course, the reason it wouldn't be so hard now is that I've walked that path.  I've found God faithful.  I've been tested and know where my strength comes from.  God is good.  I don't always understand, but I know He is good.  (This is not to say that I won't still struggle and go through hard times!)

Back to the museum.  We were split into several groups.  My oldest 3 toured the Normal Rockwell exhibit!  I heard it was great and would have loved to go in myself.  Maybe another year.

The younger half of the group were split into 2 different groups.  I took my two youngest in one of the groups.  The museum has been renovated and has a new addition since we were last there.  It's really big and nice and easy to get around in.

We were told not to bring strollers, but shortly after going in one of the security guards asked if I needed one.  I declined thinking we weren't supposed to have them.  When the second guard asked a little bit later, I gratefully said yes.  I think it was a much easier trip with a stroller!

We all had a guided tour and our docent was very good about asking questions and involving the children.  We toured exhibits from Africa.

This is a picture of heads of people in Africa.  They added two heads when they visited Raleigh to donate this piece.  Can you find them?

This pictures is made from many spools of thread!  It's one of my favorites.  Can you tell what it is?

Are you wondering why it is upside down?  Well, I'm not sure why it was done that way, but there is a neat little device that you can look through that shows it right-side up!

 We crossed paths once with one of our groups.  It is hard sometimes to be split up as I always want to know what everyone is doing and learning.  It some settings though it really does work best to tailor what we are doing based on ages.  I'm thankful to have options!

 We saw exhibits from Egypt.

I don't remember where this piece was from, but do remember that it was considered special because it was one large piece of pottery.  Not sure how they fired something this large (as it was made a long time ago - sorry don't remember that detail either.). 

We examined pictures from various time periods.  This was a portrait done of a wealthy man and his family.  Sadly, it wasn't a truly accurate painting.  He was a loyalist and lost much of his wealth after the war.  His wife died.  This was a painting of how things might have been. 

We took Flat Stanley with us.  (I know we need to send him back!!!)

This is a neat sculpture of hands.  The children tried to put their hands in the same pose and found that they couldn't do it.  Can you?  Of course, you can't either because it is of two right hands.  They then tried it with a partner and were able to do it.

We had some free time while we were waiting for some of the groups to finish.  I love watching my oldest and youngest together.  Sometimes they just tickle me. 

We visited a travelling Eric Carle museum exhibit too while we were there.  It was just a few works by Carle and some by other children's picture book artists. 

This was a delightful way to start our school year with our FIAR group.  I will confess that I'm not one that greatly enjoys art, but did enjoy learning in this way.  I'm glad my children have the opportunity to learn too as it's not something that I cover a lot in our schooling.

We treated ourselves to lunch out afterwards with lots of our friends.  I am thankful for a fun group with this to learn and have fun.  Hope you are having a fun week!

Blessings
Leslie



Harold and the Purple Crayon

I find that January is often a month in which I don't take a lot of pictures.  (Makes it an easy month to scrapbook!)  I did take a few of some of our fun with Harold and the Purple Crayon.  Rowing these books with Daniel is just as much fun as it was ... 13 or so years ago with Christopher. 

This was a fun title to use to start back to school.  I bought a long roll of paper and Daniel loved drawing an on-going picture like the one in the story.

I love how he examined the story and then set off to make his own.  I love seeing his drawings and the details that make it "his".  We are going to display this in our homeschool groups upcoming art show.  It's fun to share our work with our friends.

If it has been awhile since you read the book and you are noticing the "scribble" on the left side of the paper - that is where he is "thinking" before beginning the story.  I love the Daniel added this detail.

In the story, Harold had a picnic - with pies!  I thought this would be fun.  Daniel was suprised when I mentioned having a picnic, afterall it is very cold outside!  I assured him we would have a nice picnic - inside. 

He helped make an apple pie to get ready for our dinner.

The picnic was a huge success!  So much so that Daniel keeps asking if we can have another one.  I think tomorrow might just be the right day for another picnic!

My older two will be off skiing tomorrow and I'm looking for some fun things to do with just my younger kids.  I think a picnic will be a fun surprise for them.

Hope your week is filled with fun too!

Blessings
Leslie

New Year's Eve!

Late in posting, but wanted to share some of our fun.  I use my blog posts from year to year to help me in planning.  This year, I decided to ask my children which parts of the evening that they wanted to be sure we kept.  They all had answers ... making pizza, decorating gingerbread people, watching a movie, playing games, answering the questions, well, pretty much all of it!  We are a family that enjoys trying new things and also enjoys traditions!  One sweet tradition of this evening is having some of our favorite friends join us!

We had to have the bags!  The bags have a clock on the front with a time.  When that time is here (more or less) we open the bag.  Inside is a clue and one or more items that go with the clue.  These used to be somewhat of a surprise.  Not so much any more, but they still love it!

1^st clue: 

People are silly and funny too!

Do you think they are sometimes blue?

Maybe they’re happy or perhaps mad

A game of expressions will make you glad!

In the bag was the game Silly Expressions. 

2^nd clue:

Let’s get ready for some noise.

This is for the girls and the boys.

We’ll also need signs to mark the date

And photos of families to start the slate.

In the bag were supplies for making signs and noisemakers.

3^rd clue:

We’ve been busy, is your tummy starting to rumble?

You’ll like the next step, so don’t start to grumble.

We’re making some disks – unique each one.

Everyone will be glad when they are done.

In the bag - pizza making supplies!

4^th clue:

What makes you special and unique?      

Getting to know this is a treat.

We’ll look to the future and ponder the past,

Seeking to follow God each day of our path.

In the bag were sheets of paper with questions on them and pens/pencils.  Here are the questions for this year.

*Favorite book you’ve read this year

*Favorite trip/outing you’ve taken this year

*Name something you are most thankful for

*Something you have learned

*Favorite accomplishment this year

*Something you hope to do next year

This is personally one of my favorite activities.  I love this glimpse into everyone's lifes.  What they found important.  More about a hope or a dream.  I save the slips each year and have plans to make a memory box to keep them in. 

5^th clue:

God made you and you can’t beat that!

Glasses, freckles or a funny hat.

Our faces help others know who we are,

But our insides are what make us a star.

Inside the bag - sprinkles and other decorating items to go on homemade gingerbread cookies!  My sweet friend Rebecca made these and they were sooooo good!

We took some family photos early in the evening.  I would love to have a new family photo each New Year's Eve as a way to start my New Year in scrapbooks.  Roger was in NE visiting his family. 

6^th clue:

It’s time for adventure and maybe a giggle

Find a spot to sit and don’t wiggle

Does anyone need something to eat

You can have some popcorn while in your seat

In the bag - the movie, Despicable Me and popcorn.  (Not sure why the photo didn't turn?)

7^th clue:

The movie is over and the days near the end

Still a little more time with our friends

Let’s play a game – or maybe more

We’ll split into teams and then start to score

In the bag - pieces from some games.

8^th clue:

Let’s turn our hearts to God and lift up our prayer

He is here with us and out everywhere.

There are others who need Him and we play a part

We’ll pray for others and seek His heart.

In the bag - slips of paper with Bible verses and other slips of paper that were blank.  I asked each person to write something that they wanted prayer for on the slip of paper.  We then drew one of the slips and went around the table praying for each other's requests.  This was new for this year and I really liked it!  Our requests ranged from those serving our country in the military to the poor to orphans and more.

9^th clue:

It’s time to say good-bye to ‘10

Watching the ball drop is a fun time again

A hug, a prayer, a sweet drink for the toast

Happy New Year, it’s 2011

In The Bag - cups for a toast

What a fun way to celebrate the end of one year and the beginning of another!  I love this tradition and am thankful to my FIAR friends who introduced it to me several years ago! 

Even though it is a little late - Happy New Year to you all!

Blessings

Leslie