Monday, December 29, 2014

Pancreas Drama

I've determined that Abby's pancreas is a drama queen, just like her.  As I've mentioned, Abby had what we thought was the stomach bug. When she just kept throwing up everything (even 6 hours after drinking it) with absolutely no other symptoms (she's a wild child!), we thought there might be more to it.  Our GI said to keep in touch if it didn't get better, so I sent her an email over the weekend.  She ordered blood work, which came back today as elevated liver functioning.  Of the two enzymes that point directly to pancreatitis, one is actually below normal and the other is a slow test that hasn't come back yet.  So...

Abby's going to have an ultrasound tomorrow to check for gall stones.  Tonight, I put her on just pedialyte.  I started at a very slow rate and am increasing by 5 ml/hour each hour until I get to 50 ml/hour.  (It's gonna be a long night!)  If she doesn't tolerate that, then we are to head to the ER in the morning with the expectation of being admitted.  If she does tolerate it, we will go for an outpatient ultrasound.  We also have a plan for getting her back to regular feeds (nobody is talking oral food right now...ugh!!) with the note that anymore vomiting means she goes to the ER.

Meanwhile, she hasn't really gotten any calories at all in 8 days and has now lost about 3 lbs.

We were warned that having pancreatitis once would mean that Abby would be more susceptible to it.  I just didn't think it would be this soon.  Sigh.

Please pray for us.  I'm very willing for her to go inpatient if we can get her healthy again, but I'd really like to know the underlying cause for all of these issues.  I'm not a big fan of having her in and out of the hospital every month for TPN if this is how it is going to be.  There's a reason for the pancreatitis and I'm really hoping that our new GI can get to the bottom of it.  I have been very impressed with her so far and especially liked her laid out plan...I'm big on plans.  This was not in my plan for Christmas break.

"God doesn't give us what we can handle.  God helps us handle what we are given."

Saturday, December 27, 2014

Back to Mount Washington!

But this time, we were volunteers!  My sister, niece, mom, friend Karen, and I did a snowman craft with the kids today.  We also took little "Do You Wanna Build a Snowman?" Bags with play dough and everything needed to build a snowman.  The kids seemed to enjoy everything, although we only had 2 kids.  A lot of kids were contagious and unable to come out, but we enjoyed the time with the two we had!


I think we all enjoyed spreading a little cheer! :)


Friday, December 26, 2014

Christmas recap


While illness tried its best to mess with our holiday plans, we all ended up being healthy enough to celebrate with family!

The highlight of MY day was watching Caleb's reaction to getting a Kindle.  He really didn't think he was getting one, and he actually cried when he saw it.  He was so grateful and excited!  It was very sweet.



Abby got an American girl doll named Marie Grace, along with a doll bed and a doll table/chairs.  She was thrilled and her two dolls are snug in their new bed as we speak!



Other highlights for Caleb:
* several awesome Lego sets he is looking forward to putting together
* all of the Star Wars movies on dvd
* an under armour MD shirt
* lots of new books to read!

Other highlights for Abby:
* lots of doll clothes for her new doll
* a spinny swing that we hung from the treehouse
* a Frozen microphone
* Chapstick with her name on it! (It's always fancier with your name on it!)

I was so surprised and excited to get a lovely Pandora bracelet with 3 beads, as well as a canvas of our most recent family photo.  He did a great job!

Matt has been enjoying the 64 gig iPod I gave him as a birthday/Christmas present, and he also got an ultra slim wallet and an Under Armour MD shirt to match Caleb.

We are thankful for family time and had a fun game night tonight.  Everyone picked a game:  Caleb-Pictionary, Abby-kerplunk, Matt-Uno Attack, me--Sorry Sliders.  

I hope you enjoyed your Christmas as much as we did!

Sunday, December 21, 2014

All I Want for Christmas...



Lol!  Hope this made you smile!

Saturday, December 20, 2014

What?? What??

That's what we hear from Abby all day long because the girl can't hear a thing!  We were hoping that this hearing loss was a result of a malfunctioning tube, but Dr. T. checked out her ears during her jaw surgery and everything was a-ok...except that her left ear now has a substantial hole in it that will need to be fixed when she is older.

So since the hearing loss wasn't fluid related, we were anxious to hear what the audiology report was.  Abby had a hearing test yesterday and cooperated very well.  The audiologist was very good and worked hard to get all of the information she needed.  I feel confident that it was a valid report.

Abby's right ear has always been worse, but this time her left ear showed moderate to severe hearing loss and her right ear showed moderate.  Her left ear has never been anything but normal (her last test was in July), so Dr. T. thinks this hole is causing more problems than he thought.  Because of her age and the growth she still needs to do, the hole really can't be properly repaired for another 4-6 years.

So....hearing aids it is!  She will be getting them for both ears.  And so will her doll, Joy.  The American Girl Store puts them in and Abby is very excited!  She's also thrilled to be twins with her "sister" Emily.

The molds won't be done until February because that's the earliest we could get in.  (I look at it as a sign that we go to an awesome hospital!)  We are really hoping that this will not only have positive effects on her hearing, but also her speech.  It's hard to speak clearly when you can't really hear the sounds correctly.  Looking ahead, we are also expecting this to really help her in school.  She's a good kid, so a teacher really might not notice if she's missing some information because she can't hear.  The hearing aids also set things up perfectly for an FM system to be hooked up if needed down the road.

At one point in my life, I'm pretty sure this announcement would have thrown me and I would have been pretty upset.  But ya know what?  They're just hearing aids!!  It's really not that big of a deal. I look at it as on the same level as glasses--just correcting a different sense.  And if it is going to help her to hear better, then I'm all for it.  My one fear is that she will get made fun of, but that's something that has always been a concern for me when it comes to Abby.  We will just have to give her the tools to deal with it and pray for a good group of friends to stick up for her!

Let the countdown to not having to repeat myself 20 times begin!

Friday, December 19, 2014

The Caregiver's Notebook

A few months ago, I was given an opportunity to review a notebook designed to organize information for the caregiver of a special needs child or chronically ill person.  I loved the idea and wanted to see what the end product looked like, so I agreed.

I received The Caregiver's Notebook while Abby was in the hospital (timely!) and was so impressed with the thought that was put into this book.  The author, Jolene Philo, really included everything a caregiver could possible need!  I wish I'd had this notebook when I first started out on our special needs journey.

The notebook is separated with tabs and includes emergency information, a calendar, a list of meds, contact info, medical history, insurance, legal documents, and schedules.  And there's A LOT of space!  This is almost always an issue for us when we fill out medical forms for Abby.  "See attached sheet" is pretty much always written!

What I like most though is the encouragement this book gives.  Sprinkled throughout are Bible verses and inspirational quotes.  Jolene even included a Bible reading plan and a prayer guide that both are tailored for caregivers!

In working with Jolene to promote this book, I was able to find out some additional information behind the writing of The Caregiver's Notebook:

Why did you write The Caregivers Notebook?

Ill answer that question two ways. First, I wrote it because I understand what its like to be a long term caregiver. My father was diagnosed with multiple sclerosis in 1959 when he was 29. So early in their marriage, my mother became a caregiver. My siblings and I were caregivers from childhood until 1997 when Dad died. I also know what its like to care for a child with special needs. Our son was born in 1982 with a condition that required immediate surgery to save his life. By the time he was 5, hed had 7 surgeries and countless medical procedures. He had a final surgery at age 15. Hes on his own and doing well now. However, my mother was diagnosed with early stage Alzheimers a few years ago, so I am now part of her caregiving team. All those experiences have impressed upon me the importance of organizational tools for caregivers.

The second reason for writing the book is that Discovery House Publishers (DHP), the house that published my Different Dream books for parents of kids with special needs, asked if I was interested in creating an organizational notebook for caregivers that also addressed their spiritual needs. I jumped at the chance.

What kind of caregivers can use The Caregivers Notebook?

Because of my varied experiences as a caregiver, the notebook is designed to fit a wide variety of situations while caring for loved ones of all ages. It can be used by adult children caring for aging parents or spouses caring for partners living with disability or illness. Parents caring for babies, toddlers, young children, and teens with special needs can also use it, as can parents of typical children from birth to age 3. Its useful for parents caring for adult children with special needs. Senior citizens in good health who want to have their affairs in order for whoever will care for them in case of an accident or sudden illness. In fact, my husband and I are each completing one, though we are both in excellent health. We think of the completed notebook as a gift to give to each other, if one of us becomes ill, or as a gift to our kids should something happen to both of us.

Where can The Caregivers Notebook be found?


Its available for purchase in bookstores. If a bookstore doesnt have it in stock, they can order it. One way to order online is through the publisher at www.dhp.org. Or to go to my website, DifferentDream.com. Open  the Buy the Booktab and click on the link for The Caregivers Notebook. That leads to the Amazon link. The notebook can also be ordered through Barnes & Noble and Christian Book Distributors (CBD).

Parents of special needs children, if you are needing some help getting organized, The Caregiver's Notebook for you!  It's a wonderful resource.

Thursday, December 18, 2014

Throwback Thursday


Abby's handprint on her first Christmas at 2 months old.  She was SO tiny!  Whenever I see this handprint, I'm reminded of God's faithfulness and I'm so thankful for how far she has come!!

Wednesday, December 17, 2014

Tuesday, December 16, 2014

The First Christmas Ever by Dennis Jones



When I was given the opportunity to review this book, I was excited to have a new Christmas book for the kids.  While we aren't of the mindset that Santa is wrong and we do "do" Santa, we naturally want to focus as much as possible on the true meaning of Christmas.  I love how Zonderkids kept this story so simple, but the message was very clear.  My husband also liked that the wise men came at the proper time in the story, because it irks him when people say the wise men were at the manger.

The kids enjoyed the illustrations, although I almost felt like it was a mockery of the story at times...almost like they were caricatures rather than illustrations.  It wasn't a deal breaker though, and the story made up for it.

Disclaimer:  I received this book in exchange for an honest review.  All opinions are my own.

RMH Holiday Party

Last week, I took the kids to the RMH holiday party.  I started to question my sanity as I sat in crazy traffic on 97, but thankfully we made it! 

The kids had a great time at the Ronald show.  Caleb even got to be one of the volunteers!



They even got to visit with Santa!





I am so grateful for the friendships I have made at RMH.  It's so much more than a hotel...it's a family!

It was SO good to see several of my friends and catch up on our lives a bit.

 Our kids liked playing together too!  :)

Thank you Lord for the Ronald McDonald House!!


Monday, December 15, 2014

Quilted With Love

I have known Mrs. Livingston practically my entire life.  I grew up with her oldest son (who now works at our church!), and she was the youth choir director.  I went on countless trips, performed in countless plays, and sang countless songs under Mrs. L's direction.  She was a big influence in my life and I have lots of great memories with her!

Mrs. L moved to North Carolina a few years ago, but she was sweet enough to mail Abby a beautiful quilt that she made!  The quilt blocks are Fancy Nancy scenes--a little girl who loves tutus!  Embroidered in the middle is "Keep Calm and Wear a Tutu!" with Abby's full name and birth date at the bottom.



 Needless to say, Abby LOVES it!!




Sunday, December 14, 2014

A Sincere Thank You!

I cannot even begin to express our appreciation for all of the prayers, cards, gifts, and well-wishes for Abby during her hospital stay!!!  Everyone who walked in her room was amazed at the number of cards hung up on her wall.  It was pretty incredible to see the outpouring of love for our little girl!

All of the craft items, Frozen toys, dolls, blankets, and even a bean bag chair (which she LOVES!) made Abby smile so much!  I would pull out a new toy when she would start to get bored or done with the hospital, and it would most definitely brighten up her day.

THANK YOU for loving my girl.  Thank you for praying us through this time that ended up being a lot tougher than we thought.  Thank you for celebrating with us when we finally returned home. Thank you for being people we can count on.

We are blessed.  So very blessed.

Monday, December 8, 2014

Moments

Here are some glimpses into our last few days at the Mount.  

I did a little photo shoot by the tree!




Abby is cracking me up with her joyful shrieks of "Girl Time!" whenever we do something together.  Darlin', we have had a whole month of girl time!!


Abby's boundless energy earned her a pass to go outside and enjoy the unseasonably nice day.  We kicked a ball around, blew bubbles, and drew with chalk.

Abby spent time with both therapy dogs!!  This pretty much makes it the best day ever, in Abby's book.



Abby so enjoyed playing with Abdallah!  He is a 6 year old from Dubai who is awaiting a kidney transplant.  It was beautiful to watch these kids overcome ethnic, religious, and language barriers and just enjoy being kids!


When Abby heard that Abdallah had never seen Frozen, she was appalled and was determined to remedy that situation ASAP!  Although I'm not sure how much he understood, he seemed to enjoy it!


I was able to have great conversations with Abdullah's cousin, a 21 year old engineering major in Dubai.  It saddened me to hear her talk about the accusatory looks her family has gotten since they have been in the US.  Being Muslim makes them terrorists about as much as being a Christian makes me an abortion clinic bomber.  They are a family willing to do anything to save their son.  That is all. 

Choose joy, folks...but also choose love.  Open your mind and get to know others who may be different from you.  You can learn so much when you consider things from the perspective of another.






Whirlwind

I feel like we come home from a long hospitalization chomping at the bit to get back into normalcy...so much so, that I feel like I'm going crazy!  You have NO idea how much stuff accumulates after a month away.  It takes forever to put away!  We're still not really done, but at least we can move around the house again!

Here's a quick recap of the last few days since we have been home:

Wednesday:  We got home around 2:00, furiously unpacked as much as we could, and surprised Caleb at the bus stop at 4:00.  He had absolutely NO idea Abby was coming home (which is why we didn't post anything!), and it was so sweet to see him run to Abby and give her a huge, long hug!  Videos don't post well on here, but you definitely need to check it out on Facebook.  It's pretty sweet!

After our happy reunion, Matt headed to church for youth group and we went to a birthday dinner for my mom.  My dad came home from the hospital the same day, so it was a great birthday present for my momma!

Thursday:  We jumped in with both feet back into regular life.  Abby went to school (after I spoke with the teacher on the phone to make sure she was comfortable, of course!) and I went to work.  Abby enjoyed lots of kisses from Chloe!  It was pretty much business as usual, except for hooking up that darn tube at night!  We aren't getting quite as much sleep at night, that's for sure.



Friday:  After Abby went to school, she went to my mom and dad's for a little while so that I could come home from work and work on getting things put away.  Abby got very used to me being at her every beck and call while she was in the hospital, so I have to retrain her to entertain herself now and then!  :)

That evening, we went to a birthday party for a very special adult who has touched the lives of so many.  It was a beautiful celebration, and everybody enjoyed themselves!





Saturday:  The kids and I worked around the house while Matt was at a quiz rally.  Then, we took the kids to my parents' house for the evening and enjoyed a night out!  We went to see Newsies at the Hippodrome for my birthday, and it was awesome!  This was a favorite movie of both of us from our childhood, and we'd been looking forward to it since May.  I especially enjoyed the dancing.  Unfortunately, I wasn't able to sing along nearly as much as I had hoped because they changed the words to every song!  (The people around me probably appreciated that though!)



Sunday:  After church, Matt and I had another date!  (Hey, we needed some make up dates after a month away from each other!)  Actually, the reason for this date was a Living Social deal for The Melting Pot that was about to run out.  Amy agreed to watch the kids, and we're watching hers on Friday so that they can use their deal before it runs out!  Lol!  We aren't the best at spreading our dates out, but we got a good dinner out of it!

Today:  Back to work for me!  Matt stayed with Abby on his day off and set up the Christmas tree, along with some other things on a honey-do list I left for him.  :)  Then tonight, we went to Owen's first band concert.  He did a great job and we were done in 1/2 an hour.  Woo hoo!

Like I said...crazy days!  Being that it is December, I don't think that things will be slowing down anytime soon.  But we're all together and HOME.  Abby is doing a great job of drinking all of her milk during the day and only needing a tube at night.  We're adjusting to our ever-changing new normal, and we're happy!


Friday, December 5, 2014

We are home!!!

Actually, we got home Wednesday.  I'm just horrible about posting after we get home from a hospitalization because it is soooooo chaotic.  You should see my living room!!

Anyway, we are home and it was a joyous reunion between brother and sister.  We didn't post anything ahead of time because it was a surprise for Caleb. :)

I jumped back into work with both feet, so it's time to go!