Success Story...Emaline Musson...

Our precious granddaughter was featured in the booklet printed for a Gala Benefit for the Good Shepherd Hospital in PA. where Emaline

spent two months.

The hospital wants to do a follow up story on her, too!

Since leaving the hospital, Ema continues weekly therapy.

While Emaline's Daddy is at work, her Mommy spends a huge amount of time doing therapy at home.

There are different things she does to stimulate

the muscles in Ema's right arm & exercises to

encourage her to use her right hand.

Her right hand is mostly in a tight little fist

especially when she is concentrating on

holding onto objects with her left hand.

A cast (beautifully decorated by her Mommy)

was put on her strong (left) arm to

encourage Ema to use her right arm.

From under the cast,

she was able to sneak movement with

her little fingers so next time, the cast will go further on her hand. 

The plan is to have a cast on three more times this year.

Emaline is a very happy baby now that the spasms have remained under control.

She readily smiles all the time...until she is tired...then she wants to be done with everything, get comfy & sleep!

(Hmmm...sounds like some other people I know!)

We just cannot get enough of seeing her smiles &

hearing any little sounds she makes.

It is such a JOY to see her Mommy (our daughter-in-love) & Daddy (our son) so very lovingly, gently & continually taking care of this precious little one!

Ema went to Castle Rock Baptist Camp this past week.

She loved being around all the campers who mutually loved her!

Her first little tooth peeked through at camp!

The following are a few pictures I adore!

See the change in our little Bundle of JOY!?! 

 ~~~     ~~~     ~~~

This little poochy lip picture was taken at her

Aunt Maria's wedding in April. 

I imagine she was getting pretty tired by the time this was taken.

I love it!

~~~ ~~~ ~~~

Ema in her tutu. 

I always notice her right hand. 

She is grabbing her left hand as if posing in her tutu! 

Any time her right hand does that, it is exciting!

 

happy, happy, happy...

The latest in sunglasses!!

 

Daddy told Emaline to give Gramma kisses...

Such a sweetheart!

Recently before falling asleep, I saw Ema holding a little, soft stuffed frog.

She would look at it in the eyes, speak softly to it & put the face to her mouth.

I KNOW she was saying, "I love you!  You're so pretty."

& was giving it kisses

since that's what she hears all the time!

All of a sudden, she's losing her "baby" look!

Just a couple more weeks and she'll be 1 year!!

It is very hard narrowing down the pictures to post.

They are all absolutely lovable & everyone melts my heart again & again!

Look at previous posts to see how much Emaline has changed. 

(Especially from those taken in January!)

Thank you for continued prayers!!

Praise God for so many answered prayers already!

Ema is home!!!

We finally got to see the "new" baby!

We were greeted at the door with smiles 
& a sparkle in her eyes!!!

Such a blessing!

These are a few pictures from their last week in Philadelphia.

 

Her smiles seem to be never ending...and we love that!!!

Can you believe the flowers already blooming in Philly?!?

I love this family so much!

Easter morning back at home!

Ema is wearing the beautiful dress she wore to her

Aunt Maria's wedding before leaving Philadelphia.

Notice the "Ema*line" headband!


Ema has improved immensely which is so encouraging!!
She will continue therapy with her parents & with a therapist.
Even though there is such a visible improvement,
her parents still want/need continued prayer for her.

...more to follow as time allows!

Happy birthday....

My 15th birthday with
STAMPIN' UP!
...and I have the stamps to prove it!   ; )

I started out on a little table in the family room...
moved to one of the spare bedrooms...
then to the bigger of our spare rooms 
(made 'spare' after our kids left home).
I've been working on organizing my room
when I have a few moments here & there,
to get it the way I'd really like it.
I've also added a "beading corner",
& at the moment, my desk is full of "the EMA*LINE"
headband making items!
  I'm so thankful I have a separate room for all of it!

My room became quite full again
when we moved things out of the other room
to make a bedroom for my father-in-law.

S L O W L Y but surely, I'll get it done!  :)

*     *     *
EMA'S UPDATE!

Happy 8 months today,
little sweet bundle of J O Y !

This will be Ema's last week at Good Shepherd Rehab Hospital.

It seems like a very long time since we've seen her & her Mommy.

(We we're thankful to have a day with her Daddy a few weeks ago.)

Ema will have another EEG at the CHOP before they come home.

She is a new little baby compared to the last time we saw her.

We can hardly wait to see her big smile, shining eyes
& hear her little giggles & sounds in person!

I want to feel her little arms around my neck

and smother her with kisses!

From this...

The first week in January when the spasms were just beginning...

(Although we didn't know for sure at that time that it was spasms)

To this...

A happier healthier baby!

A sweet little girl that Melanie & Ema got to know.

She was able to go home from the hospital last week!

Ema & Aunt Maria have their Phillies shirts on!!

Grandpa Musson want equal Cubs time!  : )

I want to hold her now!

our little model...so beautiful!

Lovely in Lilac!!!



The Camo ~ Pheasant headband.

The first in the Ema*line!

  


What a little dolly!

Ema had a better day in therapy even though
fussy from the prednislone.
She is using both arms better,
sitting up very well, and has smiles!!!

...and Ema is sitting all by herself!

Remember the picture showing Ema sitting with the little drum

to help hold her?

Look!  She can sit all by herself now!

Our future little musician!

She loves looking at herself in the mirror.

I'm sure she is checking out her

beautiful bows!

(Do babies know they are looking at themselves

or do they like looking at a baby in the mirror?

Hmmmm....)

Look at the love Ema has for her Uncle James!

So precious!

 

 

~   ~   ~

 

 

Such sweet girls!  Ema & her Aunt Maria are reunited!!

They haven't been together since the week Ema was born

& both look very happy to be together again!

~  ~  ~ 

    Smiles....

smiles....





& more smiles...

There have been so many smiles finally able to come out!

 Melanie's family & long time friends have been able to visit Melanie & meet Ema for the first time...

but someone is missing in this picture!

....Ema's Daddy.

Rick is back home
missing his family...

 

 ...and they are definitely missing him.

In a few years, this will just seem like a passing moment

but right now it feels major to be apart & not at home together.

Even though we see tremendous improvements,

Ema still has a way to go.

She has had to take so many drugs,.

and is going off two so a new one can be started.

Her days consist of a lot of therapy.

So many adjustments for this family & it will be worth it all!

Even though this is true,

days can be long

and the desire for "back-to-normal" can be strong.

Ema has been doing so well, but

this week has been a hard week.

She looks so fabulous in her pictures

but still needs a lot of prayer:

 *to keep going

*for the right meds to be prescribed

*for her physical therapy

*for the spasms to remain under control

*& especially her brain activity

to stay normal in order for her to progress.

We can't thank you enough for your continuing prayers!

 ~   ~   ~

"Fear thou not; for I am with thee: be not dismayed;

for I am thy God: I will strengthen thee; yea, I will help thee; yea,

I will uphold thee with the right hand of my righteousness."  Isaiah 41:10

...the BEST news yet!

Ema's hypsarrhythmias

(Infantile Spasms electrical activity on the EEG)

are GONE!!!

Her EEG showed a lot of normal activity and a tendency for seizures.

She will continue taking medicine for seizures but

will begin weaning off steroids on Monday, March 14th.

There is a 60% chance that the spasms will NOT return!

This picture was taken shortly after her EEG.

She slept in her Mommy's arms for the test

& must have had quite a refreshing nap!

Since she feels better, she can’t quit smiling!

Rick & Melanie say she is really interacting with others.

She likes to catch her Mommy's eyes then turn away with huge smiles!

A new little baby was in the therapy room with Ema.

She kept smiling at the baby trying to catch the baby's eyes!

She is making new discoveries every day!

Doesn't she look like she has lots to tell us?!

We are so blessed to see more answers to prayers!

Rick is home & back to work.

Dear friends of Melanie have been filling in the gap with visits.

Thank you to them!  What a blessing & JOY for all of us to know so many care.

What a difference a week makes...

 Melanie is so happy to hold Ema un-swaddled! 

It's so much easier to snuggle without the blankets.

 

Ema is able to go longer without her pacifier, too.

She's becoming the happy little baby that has been locked up inside.

Look!  Her little right hand in open! 

She was able to stay up on her arms while

holding her head up for quite awhile. 

She is getting stronger! 

Ema is able to sit up using a drum to lean on. 

She is looking at herself in the mirror...having a great time!

                                  


*     *     *

 

This exercise strenthens both sides. 

She leans on her weaker side (right side) & reaches with her left hand.

In one of the first therapy sessions Ema had in Bozeman, Rick & Melanie were told that black & white toys were the best to use.

They had this police car which winds & lights up.

One of Ema's favorite toys.  Perfect!

She loves watching it drive back & forth. 

Aunt Amy was able to go over for the weekend for a little more snuggle time!

A splint was made for Ema to keep her teeny little hand open & train the muscles to go in the right direction.

The smiles just keep coming!

We thank & praise the Lord for all He is doing

& already letting us see answers to prayer.

We're thankful that so far, Ema's prednisolone does not

have to be increased.

Another EEG is scheduled for March 9th.

Happy, happy little girl!

Emaline Joy Musson

Ema's update...Good Shepherd Hospital

Emaline got to meet many relatives and friends for the first time the weekend before going to Good Shepherd.

    Great Aunts, uncles, cousins...lots of friends!
               Lots of lovin'!

 

Melanie & James - celebrating his birthday.

Rick & Amy.  So glad they could be together!

Ahhhhhhh!  Must be sweet dreams!!

     The Good Shepherd part of their journey started out a little rough. 

     First of all, Rick & Melanie were surprised to find out they were sent to the wrong hospital.  It was the one for older people not babies.  Leaving Allentown, PA, they headed for Bethlehem to the Good Shepherd Pediatric Hospital.

     The first day was more for checking in, orientation and "getting settled".
     The next shock was being told their insurance was only going to cover 70%...after being told it would completely cover.  With more digging, Good Shepherd found they are completely covered. 
     Next, after being told Melanie could stay in the room with Ema, they discovered Ema had a 2 yr. old roommate & no place for Melanie to stay.  Also, they weren't allowed to carry Ema down the hall but could only use a stroller to take her to the lounge...the only place the three of them could be together.  They weren't allowed to take their baby into the guest room where they were sleeping.

     The first night, they spent part of the night in the lounge so they could be with Ema. 

     The second night, a nurse and a security guard told them that they had to send Emaline back to her room then leave the lounge because it needed to be locked for security reasons & would be best for their baby.  Having a security guard tell them what was best for their baby didn't go over well at all. This happened while we were on Skype & Rick told them he needed to finish with his parents then they'd leave.  The nurse called the head nurse at her home & they were finally told that they could stay in there that night.    Soon, we got a call from Rick.  The nurse wanted him to call us back to let us know they could use the lounge.  I don't think she wanted to be thought of as the "bad guy".

     The third night, they finally got a private room for the three of them.

     Now, we aren't against rules but none of this went along with what the kids were first told it would be like. 

     Just one more test for them.

  

     On the HAPPY side of things, Ema has been smiling like NEVER BEFORE!  It was great to see her on Skype. It was like she could not quit smiling.  She found she could do fun things with her tongue and was so happy!!

     The next day, she lifted her head to follow her Daddy walking across the room and gave him a huge smile!  This is such an improvement.  It was never easy for her to lift & move her head like that!

     She is undergoing several types of therapy and doing great.  One therapist was supposed to have her for 1/2 hr. but was having such a good time with her that she kept her for an hour!  The steroid has started to work.  Ema has still had a few small spasms so the Dr. wants to increase the dose.  It's working but oh, those side effects!!

Here's a couple of pictures from the first few days....

A sleepy quiet baby...

~   ~   ~

...turned into a wide awake, alert smiling baby!

The FIRST smile in a week!!

I wasn't sure it was our Ema!

No headband!

Here she is!

Her Daddy says it is like she was full of smiles

that couldn't get out until now!

Following therapy is play time with Daddy!




We are so thankful Ema's Grandma & Grandpa Martin
are close enough to go over for visits!
It would be hard to think of Rick & Melanie being there alone.



Love that they can be there to see the progress!




Love this picture!

~     ~     ~

Again..thanks for all your prayers & love!

Please remember to pray for Ema's parents, too.

They need strength, widsom & good, restful nights.