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!


Sunday, November 30, 2014

Before and After


The picture on the left was taken just before surgery. The one on the right is after the external screws were removed. The hardware will stay in until the end of February, but there is certainly a visible difference in her jaw structure!

I Cant Wait to Go Home!

Thats what the sweet girl said to me this evening as I out her to bed.  Me neither, girlfriend!  It's been a long month away from home and we are ready to return to whatever our normal is.  

My dad is still in the hospital, but is doing better.  He was taken off of oxygen today and has done well so far.  We are hoping that he will come home early this week.   We will all be very glad when he is home!

Abby has done well with tolerating her feeds, so we are hopefully that this is her last night with TPN.  Her doctor will be back tomorrow, so we will see what she says.  It will be interesting to see how she does once we start compressing the feeds (we want to do a whole lot in 30 minute chunks so that she doesn't have to be attached to a pump all day). I hope her stomach handles it okay! 

 I did have a tiny fright with her gtube.  A small, movable bump appeared under the surface and was causing her pain.  We had several doctors visit her and they have determined that it is a dissolvable stitch that didn't dissolve, so the body is trying to fight it off by surrounding it with stuff.  It will hopefully go away on its own, so they don't think it's anything to worry about.  Shew!

The weekends are long and boring, so we were very thankful for our visitors!  It definitely helps make the days go faster and it's fun for Abby to have new faces besides me.  I think she's tired of me. :). 

We have also done a lot of playing with a few other kids on the unit.  The little 6 year old boy next door has had fun playing with Abby.  He is from Dubai and speaks almost no English, so we have been teaching him. (Who says the ESOL teacher is on leave right now?!). It's so cool to see kids still play together and enjoy each other, despite the language barrier.  We have learned a little Arabic too!  We have also been playing a lot of games with our buddy I shared about on Thanksgiving.  Everyone especially enjoys chasing after his remote control truck as he drives it around the unit!

We still aren't sure when we will be home.  It really depends on how she handles compressing these feeds.  Friday will be a month inpatient....for a surgery that was supposed to be 10 days in!  But, at least they discovered the problem and were able to treat it.  She is feeling well and is happy, so we can hang out a little while longer.  

Just as I wrote this last sentence, the kid next door started screaming through our paper thin walls. 

 I can do this.  I can do this.  I can do this...

*sigh*

Friday, November 28, 2014

Updates on Various Sickies I Love

Matt was able to stay with Abby today while I went home to visit my dad.  It's really hard for me to be away when he is sick, and I had a lot of concerns.  I was able to get a lot of the questions I had regarding his care answered.  I took a lot of notes during our discussions with the doctor and respiratory therapist, then texted those notes to my mom and sister so that we all had the same information!  I pressed the doctor for a plan (I like plans instead of the "wait and see" method of healthcare!) and was satisfied with what he laid out.  

The good news is that Nurse Julie successfully got his oxygen turned down and a portable rank for him so that he could get up and walk!


I'm pretty sure the staff has me on their list.  I might be blocked by security the next time I try to visit.  (No, seriously, I was very sweet and had no reason to even raise my voice!). But this is my DAD!  I have got to make sure he is okay, and I'm the one with enough medical knowledge to check up on the doctors and ask the right questions!

My hope is that if he continues to do well over the weekend, he can possibly go home Tuesday or Wednesday.  It's been a rough week!

Abs is doing well at MW and is now on FULL FEEDS!  That means that she is finally receiving all of her calories per day by gtube instead of relying on the TPN.  If she tolerates these feeds over the weekend, the TPN should be stopped on Monday! (Insert happy dance here!). Then we can finally work on compressing feeds and deciding how much she can take orally.  

I would be lying if I said I'm thrilled about her being gtube dependent again.  This was supposed to just be a safety net!!!!  That darn pancreatitis threw us for a big loop and has caused so many issues.  While we are disheartened that she will come home completely gtube fed (she can eat orally, but isn't really doing enough to account for any calories), it's what is best right now.  It's just a significantly bigger step back than we had planned when we agreed to put the tube back in.  

I really hesitated to even begin calling myself a "tubie mom" again because it was only going to be used when absolutely needed.  Otherwise, it would just be a fun belly accessory.  But now....yep, I'm officially a tubie mom again! Time to be loud and proud!









Thursday, November 27, 2014

True Thanksgiving

 Our Thanksgiving meal wasn't around a big, brightly lit table; we were in a cafeteria.  There was no carved turkey with all of the fixings sitting in the middle; we went through a line and got food ice cream scooped onto our plates.  The food was mediocre at best; I missed our candied sweet potatoes and homemade pies.  We didn't share a meal with extended family and enjoy the laughter and noise of the kids; we sat near complete strangers with CNN blaring in the background.  

But you know what?  I WOULDN'T CHANGE IT FOR THE WORLD.  Our little family was together and happy, and that is all that matters to me.

Today, my heart broke for the kids who had no one with whom to share their meal.  While I was blessed to eat with my family, they sat alone.  While we laughed and played, they sat in their rooms and watched TV.  

I don't know their situations and I know that some people do have to work on Thanksgiving, but I would absolutely make sure that someone was there for my child!  One 13 year old boy told me all day long that someone was coming to visit him...no one ever came.  When i took him some summer sausage from an awesome fruit/meat/cheese basket we got, he looked like he was close to tears. I tried to get him to play a game, but he wasn't in the mood.  I could understand.

For some of these kids, the only fun they have is with the therapists.  Today's holiday meant all of the therapists were gone. My wheels are already turning for what we can do in the future.  Maybe we can do a craft in the morning, or at least send craft kits for the kids to do.  Or maybe we can bring a bunch of games to play with the kids.  Something has to change...these kids have gone through too much to just sit there in front of a TV an entire holiday.

When you pray, remember the families in the hospitals.  But especially remember the ones whose circumstances left them without family today.  They need a little extra love tonight.

Wednesday, November 26, 2014

So This Happened...



Lol! Matt won't be walking around in flip flops for a while, but he is certainly a dad who will do anything to make his kids smile!


Tuesday, November 25, 2014

Busy Days!


As predicted, my girl's days have been very busy this week!  Yesterday, she had OT with one of our favorite therapists, who has a little girl just Abby's age.  He's so much fun and Abby adores him.  Today, she had PT and speech and had lots of fun doing those too.  The therapists do a great job of making it as fun as possible.

Abby also got to spend several hours playing with the therapy dogs, Yuba and Katie Bell.  She was the only one in the playroom for most of the time, so she was ecstatic to have the dogs all to herself!  She played doctor, threw toys, brushed them, and gave them lots of hugs. The girl loves her some doggies!!




Eating has been going very well and her chewing looks fantastic!  She was a bit more uncooperative in general today, so she didn't eat quite as much, but that was just her mood.  We are taking the opportunity to try new foods while she has all of this interest in eating!  I keep track of every single thing she eats, because it affects her total caloric intake and how much TPN she gets.  She has currently eaten 15 goldfish in an attempt to avoid falling asleep.  So far, it's working!

We have seen no signs of pancreatitis!  Her numbers are getting better--not normal, but better.  They are going to check her enzymes again on Monday.  The TPN has been cut to 12 hours, which means she only needs it from 6p to 6a now.  She still has the feeding going all of the time, but at least it's only one tube instead of 3.  She is also back to her pre-surgery weight, which makes me very happy.  Next week, they will begin compressing her feeds so that we can have w more manageable home schedule.

Tonight, we had a little "girl time," as Abby likes to say.  I painted her fingernails and toenails....



And she painted mine!  :). You should have seen her eyes light up when I asked her if she wanted to.

The sweet girl next door is going home tomorrow.  I think Abby might cry when she leaves!  She really enjoys spending time with her, and it's so awesome to see kids just be kids.  Abby doesn't see the physical or cognitive delays.  She just sees a little girl with a pretty smile who likes to play.  Love!

On another note, please continue to pray for my dad.  If you've seen my Facebook updates, you know that he is in the hospital for pneumonia and is in a tremendous amount of pain.  He really hasn't gotten much better and they can't figure out the cause of the pain.  He had another CAT scan tonight, so hopefully that will provide some answers.  

Sunday, November 23, 2014

Slow Going

It was a slow weekend here at The Mount.  The playroom was only open for 2 hours each day and there were no other activities available.  I had some toys with me, but not enough to keep Abby occupied for 2 full days!  I've attempted a lot of origami, although I've determined I'm not good at it. Abby likes it anyway!



She quickly grew bored of the same old stuff!  When that happens, she tends to make her own fun.  That inevitably involves either a mess or breaking something!



Thankfully, my cousin and his son came for a visit yesterday!  Jacob is great with Abby and pretty much did whatever she wanted to do.  Jacob also brought a Frozen paint set, which was a huge hit with Abs!



Abby has made friends with the little girl next door.  She has a lot of physical and cognitive challenges with no one to visit her, so I think she really enjoyed playing with Abby.  She pretty much cries all of the time, except when she is playing with us.  We think she even tried to say Abby's name!  Abby loves her too and has big plans to do manicures with her when Matt brings the nail polish up!  :)

A lot of the kids here don't really have visitors and just lie in bed watching tv all day.  It makes me so sad to see them when they should be out and about doing something!  The nurses try, but they have 4 patients each.  They can't entertain kids all day!  A nurse doesn't take the place of a parent.  I know everyone's circumstance is different, but I am going to be right by my girl's side.  As long as she is in the hospital, I will be too.  

My mom, grandmother, aunt, and uncle visited today, which was a great distraction from the boredom!  Mom came with her magical suitcase of fun, and Abby eagerly played with just about everything in it!  She left a few things to hopefully entertain her when we have downtime.



I expect that this week will be at a much quicker pace with all of the therapies Abby will have.  She will get OT, PT, and speech, as well as lots and lots of feeding therapy.  The Child life Specialists will be here more, so we can go to the playroom and participate in activities there.  I'm guessing they will probably have lots of Thanksgiving crafts to do this week.

We had hoped to maybe get a day pass to go home for Thanksgiving, but it doesn't look like that will happen.  Abby is still on TPN 24/7 and we aren't trained.  So, we will enjoy Thanksgiving as a little family of 4 here at the hospital.  Volunteers make dinner for the families, and I'm sure we will get lots of yummy leftovers from my family too.  It's being together that matters!  Choosing joy!

Friday, November 21, 2014

Welcome to the Mount!



We said a bittersweet goodbye to our friends at Hopkins today and traveled by ambulance to Mt. Washington.  

Abby was not thrilled with loading onto the ambulance, but she settled down when she realized I really was going with her!

We settled in at The Mount, thanks to my wonderful parents who brought all our stuff over and helped me unpack!  They rock!



Abby has already been seen by her doctor, 3 therapists, 2 child life specialists, and the therapy dog! :)


Fabulous news:  Abby chewed wonderfully for her feeding therapist!!!!  We were all amazed at how well she did. It looked fantastic and SO much better than before!  The new jaw alignment is working for her! 

Later, some Ravens Mega Fans came to visit.  They handed out treats and had cake.  These big, fierce-looking men were so sweet and gentle with the kids!


Abby ate almost an entire piece of cake during the party!!! I was ecstatic! She says that it is a lot easier to swallow now.  Yay!!!!

The Child Life Specialists then had the kids make their own Ravens shirts. In loyalty to our Redskins, Abby decided to use sparkly purple to make her own shirt!  She was 100% the artistic director!


It's been a fun first day, so hopefully they will have more fun things to do this weekend!






Thursday, November 20, 2014

Moving Out!

We will be moving to MWPH tomorrow!  We are ready to be back among friends who know Abby so well.

Abby was able to eat a little applesauce today!  They are being very cautious because they don't want to push her pancreas herself, but they think that tiny amounts every few hours should be okay. She will be enjoying pudding in a little while!  The funny thing is how interested Abby is in eating, which we have never had before!  This could be a good side effect of pancreatitis!

Today was a fun, busy day.  She had OT in the gym, went to the library, walked all the way to the cafeteria and back (a very long walk!), and did a fall craft. I met with lots of doctors, did laundry, worked on insurance issues, and packed stuff up. I think Abby had more fun! :)

So tomorrow, onto the Mount!  One step closer to home!

Wordless Wednesday