Wednesday, May 27, 2015

Karsyn's Karnival

Our friend Karsyn has an entire carnival named for her, to celebrate Down's Syndrome!  Abby and Karsyn are friends from the Young Athletes program, and we love to support the carnival.  It's huge and I just found out today from Karsyn's dad that they had over 1,000 people come!!

Caleb's favorite game was this one, where you shot nerf guns to knock down little people.

Abby wasn't too interested in playing games, but she loved the animals!

They had a decorate-your-own-cupcake stand, which is always sure to be a fun, messy activity!

Caleb also liked this catapulting game.

Yes, that's my kid in long sleeves and jeans in 80 degree weather.

Spidey Selfie!

No characters for Abs, but she'll take a selfie with Momma!

It is always such a fun event to raise awareness and funds for Down's Syndrome.  Karsyn's family is exceptional, and I'm so proud to know them!

Wednesday, May 20, 2015

Busy Boy

This guy is THRILLED to be doing a space camp, a performing arts camp, golf lessons, and fencing lessons this summer!!  

The space camp is with our local community college and they bring in NASA employees to instruct.  They even have a flight simulator.

The performing arts camp is held at our church and is run by a kids' arts company.  The kids will take classes for acting, dancing, improv, etc.  they will put on a show at the end of the week.  

Caleb has really shown an interest in golf.  After finding a used kids' set of clubs online, Matt taught him some basics.  He will participate in a clinic in a few weeks. 

Fencing lessons will start in June and go through the summer.  He has been wanting to learn to fence for FOREVER, and he was ecstatic when we heard about this class.  The best part?!  It's free!!!

With all of this activity, he's certain to have a wonderful summer!


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