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