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







Tuesday, November 18, 2014

Where Should We Go?

I'm at RMH tonight to get some sleep for a change!  Abby has been extremely needy and I've been basically running on coffee.  While I hate leaving her (she was bawling!) :(, this is the last night Matt will be able to be there for a while.  It was a good opportunity for me to rest and recharge.

Medically, Abby is doing well today.  Plastics is pleased with how the scars look, so their job is pretty much done.  The peds team is following her very closely.  We usually have multiple visits from them each day, which makes me feel like they really care about her!  Her concerning enzyme levels have decreased slightly, so at least they are heading in the right direction.

The thing we are learning about pancreatitis is that if you try to push someone too fast, you can have another attack.  There's already a good chance that Abby will have future flare-ups of pancreatitis, so we don't want to push her past her limit.  Therefore, every increase will be done very slowly and she will be closely monitored.  They just started TPN (artificial nutrition) this afternoon, and she is getting a tiny amount of pedialyte in her gtube to see how she does.  So far, so good.  They really don't know how long she will be on TPN.  It hopefully won't be more than a few weeks, but it could be longer if she isn't tolerating feeds.  They  have a low threshold right now for stopping anything by gtube if she vomits or has any pain at all.

So since she's going to be on TPN for a while, we will be heading to a rehab facility of some sort until the feeding stuff is straightened out.  We found at today that KKI won't have a bed available this week, so the coordinator is now checking with MWPH (where we have been inpatient several times and where we did our feeding program) to see if we can get in there sooner.  We know that the hospital setting is not the best for Abby, so getting her to a place that is a bit more homey will be good for her all around.  Plus, the therapy here has been less than stellar (very sporadic and not very helpful), so I am anxious to get her in a placement that specializes in rehabilitation.  Either place should meet the needs she has at this point, so I think it will come down to which one could take her quicker.

The good news is that the MRI came back clear, which apparently gave Abby permission to talk!  ;)  She's still only talking on her terms and is very hard to understand, but at least we've got something. Her fine and gross motor skills are better.  She's still got a ways to go before she is back to her baseline, but I definitely feel better about her not having lasting effects from a lack of oxygen.

So, we will do an intensive program to work on the feeding issues (I'm not even sure actual oral eating is even a goal right now, but we'll have to see how well she does switching to gtube feds), as well as work hard on fine and gross motor and speech.  I'm hopefully that if we get a jumpstart and hit everything hard now, we will be somewhat back to baseline when we go home and can pick up where we left off.  Wishful thinking?  Perhaps!

When are we coming home?  NO idea.  I was hoping to be home by Thanksgiving, but I don't think that's a realistic goal.  So now I'll just say that we will be home by Christmas and I'll be happy if it's before then!  Thankfully, our RMH family is here for us and we can stay as long as we need to.

Regardless of where we are on Thanksgiving, we'll be together as a family and thanking God for bringing our Abby back to us!

Monday, November 17, 2014

She's Talking!!!!

Praise God!!!!!  She is talking!!!  She was mad because I wasn't getting in bed with her (a bad habit we have started the last few days...) and she yelled Momma!  I nonchalantly answered and just kept the conversation going.  It worked!  

The tears were flowing tonight!  I told her she scared us so much!  Her sweet reply was, "I won't do that anymore."  What a sweet, wonderful little girl!  I have missed her so much!!!

Sunday, November 16, 2014

Adventure

Abby and I were given permission to go on an adventure around the hospital!  We walked all around, taking our time to look out the windows, talk about colors, and notice various things around the hospital.  Even though she isn't talking right now, I'm trying to give her as much language exposure as I can.  

I wish I could have taken a picture of our set up!  I was pulling the wagon and pushing the IV pole with the same hand in order to keep them close enough to not pull at her IV!  It was quite a workout!

After picking up some dinner, we visited the statue of Jesus in the original part of the hospital.  


We both loved getting out for a while!!  I'm hoping to make it a daily occurrence if I can.  It does us both good!