Life as a Leach

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 e...

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! :)

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 ...

Lol!  Hope this made you smile!

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 gro...

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...

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!!

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.

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!!

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!!

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.

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 Ab...

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...

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!

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!

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 vi...

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 me...

 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 sur...

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!

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,...

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 s...

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!!!! ...

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!