Thursday, November 20, 2014

OT, PT and Speech

Part of Elsie's recovery has been to go to therapies.  Thankfully we got her right in to a wonderful facility that's really close to my parent's home.  So, twice a week she has occupational therapy, physical therapy and speech therapy all in a row.  Each one lasts a half hour and she's done really well with the guidance these ladies provide.


OT: we talk a lot about Elsie's sensory needs...activities that help our active little lady to calm and focus.  And we play in a way to try to keep her attention.  



PT: Elsie's physical therapist has seen the most progress.  When we began she was still really weak from surgery.  So, one of her goals was to walk unassisted 50 feet.  The first day she accomplished that one!  She's also working on squatting, going down a step, and keeping her heels down when she walks.  


Speech: just as before surgery, Elsie still doesn't talk.  She babbles and she uses some sign language to communicate, but no spoken words, yet.  At her follow-up appointment both the brain surgeon and her epilepsy doctor told me, "I don't see any reason why she shouldn't development language."  Now that her brain is clear from the "fuzz" of that electrical activity, we should see some developmental strides.  But I've also been told it could take five to six months from the time of surgery to see any big changes.  So for now, her speech therapist is working on giving Elsie a new form of communication, using pictures to make a choice.  We're trying to teach her that pictures represent objects that she will be given.  So we've made little laminated pictures of food, toys and other things.  We're hoping this will be a good system for both of us.  

All of these therapies will continue when we settle back home.  And Elsie will return to preschool which will also include many of these types of activities.  With all of this input we're hopeful our little lady will grow and develop and learn new things at a steady uphill pace!  Can't wait to see her continued progress.  





Sunday, November 9, 2014

Grand-love

Our children have amazing grandparents.  Seriously, all four of them love the four of us like crazy and will do anything for us.  Right now I'd like to brag on my parents a little bit. 



They have been and continue to be amazing examples of sacrifice and love during this trying time.  When I told Mom surgery would likely be in Orlando, she said, "Well, I can be there, whatever you need."  And she was there, supporting me, taking care of Emma, even sleeping on that hard hospital bed so I could have a good night's sleep at the Ronald McDonald house.  



Since coming back to their house we've really just made ourselves at home here.  I pick up as much as possible, but there are toys all over all the time, and they don't complain.  They say things like, "what will we do when you little munchkins have to go home? It'll be so quiet around here!"  



They've provided so much (housing, meals, babysitting, even free speech therapy! Not to mention emotional support) and give with such joy.  There are no words for that kind of generosity, no thanks that can be given.  Even if we could somehow repay them, it would be an insult to try.  Their gift is an expression of their love and devotion to us.  That's the nature of sacrificial, unconditional love.  It's freely given, undeserved, unable to be repaid.  

Mom and Dad, thank you for the incredible gift of this fall with you.  We hope we will love our children and our future grandchildren like this.  We all love you so much!

Thursday, October 30, 2014

Recovery FL style

Elsie is doing really well and going to therapy appointments regularly.  (I'll tell you more about that soon, but let's just say, she's already passed one of her PT goals.) I thought you might like to see what recovery looks like while we're spending this fall in the warmth of southern Florida.

A morning out with Grandpa...on the one day of the week he didn't golf! 





Emma and I enjoyed a hot afternoon at a "fall festival."  (We've been recovering from 20 days in the hospital too.) 




And tonight, Mary Poppins movie night on the patio.


We're so thankful to be at Grandma and Grandpa's house.  They're taking great care of us...all three of us! 










Wednesday, October 22, 2014

Yesterday and today

We left the hospital Monday evening.  So we've now had two days at Mom and Dad's.  The progress she's made in these two days is remarkable.

Yesterday she could barely sit in her booster seat.  We added a towel because she was leaning to the right.  Today she's sitting just fine.

Yesterday she sat and played on a blanket, reaching for toys, but hesitant to move.


This morning, we went to a physical therapy appointment and they let us borrow a walker for her.  After walking with it several times today, this evening she decided to walk 20 feet by herself!  I was right there to catch her because her balance isn't great yet.  But, wow!!!  She's also standing on her own and cruising around the couches.  


Yesterday we got her outside a little bit.  Today we took her for a walk.  Must feel so good after 20 days indoors.


Yesterday she got to spend the whole day with her daddy, but today he had to leave.  Being with daddy is cause for smiles.  Because her right side is still weak, she has a crooked smile which is just adorable.  


Elsie is eating well, sleeping well, happy at play, and sitting still for books and snuggles.  These two days have been filled with steady uphill progress.  All I can say is "Wow! Way to go, little lady!"  

(BTW, the bandanna is to help prevent her from itching her incision. It was her Dad's idea, isn't it cute?  She usually grabs for it first.)

Monday, October 20, 2014

Oh happy day!

At first they were talking about discharge tomorrow, but then...

They first moved us to another room.

Then we talked with the epilepsy team. After discussing how well she's doing, the head doctor asked us, "so when are you going home?"  I said, "you tell me! When can we leave?"  He said, "I see no reason to keep you. You can go."  

So we packed up.  Elsie first got a bath.


And now we're on our way to Grandma and Grandpa's house!  Woohoo!!



Twenty days is a long time to live in a hospital.  We received wonderful care while we were there, but tonight we're thrilled to be leaving.  Thank you FL Hospital.  Thank you Ronald McDonald House. Bye bye!! Prayerfully we're only coming back for visits to show you how healthy our girls are.  


Sunday, October 19, 2014

Slowly but surely

We're seeing good signs, and a few setbacks, in Elsie's recovery.  It's so nice to have her free from all those wires! After 24 hours the bandages came off.  She's been eating well and we hope to see more energy and more strength tomorrow.  One medication was keeping her lethargic and they stopped it today.  Pray for strength, especially for her right side which has been weaker than the left.  Pray her little body will get the right amounts of sleep and play and she'll be willing to start crawling and walking again when she's ready. We know how much she loves to move and we want to see it again.  And pray that the smiles start to emerge again too.  






Friday, October 17, 2014

Sleeping Beauty


This is how she looked most of today.  She did wake up a couple of times.  She's moving everything and was able to drink some apple juice and eat some Cheerios.  The rest is good for her and I got a nap too.

The doctors are saying the surgery went really well and all in all she's looking good.  Now we pray for a speedy and seizure free recovery!