Wednesday, May 20, 2015

Princesses



My Tough Kiddo

Sorry I've been quite here recently...same old busy! Abby has really improved since we have been home.  Last week she started running and this week she has started jumping and hopping a little!  Her back still hurts now and then, but stretching seems to really help.  

So does yoga!!  We have discovered that Abby really loves yoga!  I found some kids' yoga shows on On Demand that we enjoy doing together.  Some things need to be modified, but it really seems to help her back feel better.  I'll often see her in the floor stretching out when she's hurting.

We have been doing pt at an outpatient center an hour from home  in addition to being with our awesome ITP therapist.  The extra boost has really helped her improve her skills!  I've set up a speech eval there to get some extra speech services as well.  I really like the center, although I wish it were a little closer.  

Abby went back to school last Tuesday and has overall done very well.  It's hard to believe tomorrow is her last day of preschool!  Next year, she will be riding the bus home with Caleb for pre-k!!  Waaaaah!!!!




Sunday, May 3, 2015

Settlin' in!

Abby is doing great!  She is pretty much her normal self, except that she does get tired easily and takes a few naps each day.  She hasn't had anything except Tylenol in 24 hours, but she also hasn't done anything very strenuous.  The real test will be tomorrow's pt appointment!

She can't sit comfortably in a 5-point harness because of where the straps hit, so we have switched her to a booster seat.  She has been big enough for a while, but now we didn't have much of a choice.  She's quite happy with her new seat!



  My awesome brother in law picked us up from the hospital because Matt was swamped at work.  Thanks for going way above and beyond, B!  Abby was thrilled to go home!


Caleb and Abby are back to their normal arguing-one-minute-and-hugging-the-next! :). They are glad to be back together though. 


Here's a picture of the incision when the doctor was changing the bandage.  It actually goes a little farther under the arm than this even shows!  We thought the scars from August were big--that left scar looks so tiny in conparison!


She's doing amazingly well for a girl who has been through so much.  She's so brave!



Thursday, April 30, 2015

Getting closer to going home!

Sorry I didn't post last night.  I was so exhausted by the time that Abby went to sleep that I fell asleep too!  

Abby has had a busy 2 days.  Since she is no long tied to an iv pole, she's enjoying activities around the hospital!  She got to meet Mike Berenstain, the author of The Berenstain Bears. 

 He wrote a new book about visiting the hospital based on what he has seen at CHOP.  





The kids all got a book, and then he demonstrated how he draws the bears.  

Afterwards, Abby got to keep the drawings that he made!  They are pretty cool, one-of-a-kind souvenirs!  

We also visited The Seashore Garden, which is a really cool rooftop garden with lots of toys.  Unfortunately, there was a little boy there who was a little rough, so I spent most of my time being Abby's bodyguard.  But she still managed to have fun, even with Momma hovering!


We even met another therapy dog on our way to the garden.  This makes #5 this stay! :)


Today, she got to go to a princess ball where they had crafts and a photo booth with lots of princess decorations.  




She has been cleared by OT and PT, and her repeat measurements of her chest wall show that she's getting more room.  

We had X-rays and a ct scan today and are hoping to get the results tomorrow.  I've found a pediatric therapy center in Edgewater that will do her PT.  I spoke to the therapist myself and she seemed very willing to learn about the veptr to help Abby.  I called several therapy centers who were reluctant to take her before I found this one, so I'm happy I didn't have to go all the way to Baltimore!

The best news is that Abby slept without cpap last night!  If she does it tonight, she won't need to use cpap at home.  Our home company brought it today and trained me on it, just to be safe.  We will keep it in our home at least for a while just in case she needs it.  We are hopeful that she will do well again tonight so that we can keep the machine in the closet at home. :)

Our plan is to go home tomorrow.  Special thanks to my brother in law for coming to get us, since Matt is knee deep in church yard sale stuff!  My parents have been here the last few days and have been so helpful in entertaining Abby while I made phone calls to therapists, got trained on the cpap, etc.  

My parents got to meet our famous hero, Dr. Campbell, yesterday.  He is such a wonderful man.  I'm so thankful he gave my girl a chance at a better life!



So...almost home!  She won't be ready to go out anywhere for a while, but at least she can recover in the comfort of her own home!  She tires really easily and the meds knock her out, so I'm figuring she will need one or two naps a day.  


Thanks for all of the prayers and words of encouragement!  We are thrilled that she gets to come home so quickly!!!  God is so good!



Wednesday, April 29, 2015

Back on cpap

Abby was put back on cpap at 1 am.  She got worn out and could no longer maintain her sats.  I was also noticing increased work of breathing, even 1/2 an hour after giving pain meds.  (We were hoping it was just pain--no such luck).  So...we shall see what Pulmonology has to say about that in the morning.  She is already breathing much easier and her sats are higher since she was out o cpap.

And....1 am is also an excellent time to get a roommate, apparently.  I woke up to the sounds of moving furniture. Thankfully, the new roomie is only here for asthma and is not at all contagious.  Don't worry--I asked.  #nogerms

Tuesday, April 28, 2015

Another good day!

Abs had a good day, although she was a bit cranky at times!  It seems you are meanest to the one who is by your side taking care of you 24-7...

She was taken off of the pain pump today and therefore didn't need continuous heart and lung monitors...sweet freedom!!  We were even allowed to explore downstairs for a while this evening, which was lots of fun. She still has the picc line and needed a rescue dose of iv dilaudid today, so I'm not sure if they will pull the picc tomorrow or not.  

Her shoulder seems to cause her the most pain.  Her shoulder blade was stuck under the spine, so they had to pull it out...I'm sure it hurts!!!

The plan at this point is to try her off of cpap tonight.  If she can do it two nights in a row without desats, we will be able to talk about going home (!!!).  I'm not getting my hopes up too much, but I'm glad we are heading the right direction

Here are a few pictures from our day.  She did my nails. :)



Napping on momma's couch!



!

Monday, April 27, 2015

In typical Abby fashion

This morning, Abby was in so much excruciating pain that she just sobbed and couldn't even stand by herself for a minute.  The OT was really concerned that she wasn't making a lot of progress.  

Fast forward a few hours to when the PT came in.  Abby got out of bed, took a few tentative steps, and decided to walk halfway around the unit to the playroom.  That's so Abby!!  :)

She's still needing a strong hold on my hand, but this is a HUGE step for her.  The playroom is so motivating!  We were going to walk back there tonight, but she fell asleep in the middle of putting a puzzle together with me!  I think she's probably out for the night!

The pain team is in the process of transferring her over to oral pain meds now that she is getting more food in her belly.  I'm encouraging Abby to eat preferred foods and just putting the pediasure through her tube for now.  I have learned that pushing the pediasure too soon will cause her to be completely turned off to food completely.  

She is still sleeping on cpap and showing that she needs it.  The pulmonologist doesn't want to ake any major decisions about her future with cpap until her pain meds are decreased, but he warned us that there is a good possibility that Abby will go home with it--maybe short term, maybe not. If it's only at night, it won't affect our day to day life too much except that she won't be able to spend the night anywhere while she is on it.  Cpap really isn't what we want, but I just go back to we've done a trach and a vent.  We can do this!