Running up for her hug!

Last day

Last day of camp

Last day

Weekend fun

Josephine's evaluation and last day of camp

Tomorrow is the last day of camp.  We head to the Smokeys for a little fun before going home.

Josephine's therapist reviewed her progress with me today.  Although Josephine worked very hard at camp,  her progress is not yet very noticeable.   The camp was a great starting point for her, and a very positive first constraint experience.  However, her hand is  severely affected, and time, maturity, and additional therapy will be needed to reach our  goals. 

She still needs full hand over hand support to do  bilateral activities.  An example of a bilateral goal is holding a large ball using both hands.  She still needs full support for weight bearing activities, which entails holding her hand to the ground to prevent her arm from pulling up to her chest, and full support at the elbow.

She cannot yet release an object, but the good news is she now visibly concentrates to try to release an object.  So, she is trying to figure out how to open her hand!   

I feel like opening her hand is like me trying to wiggle my ear.  ....I can picture my ear wiggling, maybe even watch someone wiggle their own ear...but there is no path from my brain to my ear  telling it to move.   Josephine's  stroke killed the part of the brain that sends a signal to her hand, and until  her brain rewires that control, she can't open her hand.  The key to helping her find the control to those muscles is weight bearing which will  provide sensory input to her arm and hand and strengthen the muscles to support the desired movement.

Hemiplegia means paralysis on one side of the body...and paralyzed is descriptive of her hand.  Most doctors use hemiplegia and hemiparesis interchangeably.  Hemiparesis means weakness on one side of the body.  Josephine has no movement in her hand, but almost normal movement in her foot.  Whereas, Madalyn has movement in her hand, but no movement in her foot (no dorsiflexion or toe wiggling).  I guess  that  is why the two diagnosis ended up being used interchangeably.

 Tomorrow Madalyn's therapist will go over her progress with me.  I was told that she significantly increased her speed of fine motor tasks (stringing beads with affected hand, etc.)  so I'm excited for Madalyn.  I also know that Madalyn had a great time at camp.  I'm most thankful for that, since I was worried about "making" her come.

Camp photos

A visit from a friend

I met Stacey and her daughter on the hemikids email group 6 years ago!  She stayed with us this weekend and we visited the Children's Museum and aquarium.

Crazy busy

We are in the final week of camp. Taking care of 3 needy dogs (one that had to visit a local vet twice due to coughing from heart issues) and two kids...without my normal family support is BUSY..

But, all is good. Madalyn's behavior is improving each week as we wean off Keppra and increase Depakote (both seizure medications).

Madalyn is a great little laundry helper as you can see in this picture! She is also great at holding open doors, and swiping hotel cards to enter the hotel.

I am enjoying getting to know more and more about Josephine each day.  She is opening up and becoming more expressive.  She doesn't have many new words, but has started babbling with a lot of expression and laughter.  She now smiles easily and often.  She loves to get her sister hyper and will act crazy in the bed at night just to entice Madalyn to tickle and wrestle with her.

Tonight when I asked Josephine "who is mommy", she hugged my neck tight and kissed me right on the cheek.  I am amazed by this child's sweetness!  As I was playing with Madalyn this afternoon, Josephine asked to get in her highchair.  She ate a snack and then reached for a crayon and coloring book.  She quietly colored (scribbled on the paper) for another 30 minutes.

As far as camp progress, Madalyn can do monkey bars again.  She lost her ability to do monkey bars sometime after she had to stop her first seizure medicine.  I don't know if it was because she didn't practice for a few weeks, or if her motor skills regressed due to spiking.  Unfortunately, the therapists here feel she has regressed some from last year.  She is still doing great, but her left hand is not as quick or strong as it was last year.  Because she does constantly use all of her skills,  I don't think she has regressed because of lack of practice or therapy.  That leads me to believe it is from the seizure activity.  This means once we get that under control, she should gain it back.

The main goal for this summer for Madalyn is crab walk.   Monkey bars and crab walk are  strength building activities which are great exercises for all people, but especially someone with hemiparesis.  The tightness (tone) and weakness is forever, but with a regular strength training regimen, she will get the most function possible.  The therapists think crab walking is difficult for Madalyn because of a weak core.  Therefore, they are working on exercises to strengthen her core muscles.

Josephine has gained strength and over the weekend was able to hold a side sit position for a few seconds without support.  This is a major accomplishment.  She still cannot open her fist, or move her fingers, and realistically, that may not happen this summer.  I've talked to parents of kids with arms similarly affected, and it seems the children are around 3 or 4 before they are able to open the fist.  I do think we will get there eventually.

For now, I'm thankful that she is adjusting well and is happy.  Motor skills, although a worthy goal, are less important that health and happiness:)

Sleeping babies

Walking in a park with our friends

A post from a blog I follow. From a foster mom in China, saying goodbye

Please read the blog entry from a foster mom saying goodbye to her foster son: 

Walking to China.: Love Wins



Josephine has a foster mom in China.  We are fortunate to have a few photos.  In the beginning Josephine looked at the photos and called her momma.  She even kissed the woman a few times.  Madalyn also has a foster mother in Guatemala.  I met her each time I visited.  On the last day as she handed Madalyn to me, she collapsed into tears as she said goodbye to the child she parented for 6 months.


Josephine was taken from her foster mom and returned to the orphanage about a month before I picked her up.  The orphanage told me she cried  for her foster mom every day for 2 weeks.  I can only imagine how her foster mom felt, knowing Josephine couldn't understand  why she wasn't hearing her cries and coming for her.


 I am so thankful for my children's foster parents.  They chose to love my children, giving them the gift of trust and love at crucial times of their development.  


And not only are there two foster moms out there loving my children, there are also four birth parents loving our children.  I've read enough blogs from birth moms to know my children's first parents loved them, .and though I hope they feel peace, I know they will likely grieve a lifetime for the child they were not able to parent. 

We may some day be able to reconnect with Madalyn's birth parents in Guatemala.  I cherish the pictures from the day we met and had dinner together.  I am sad for Josephine and her birth parents that  we will likely never be able to find them.  I wish I could tell them the sick little baby they had to say goodbye to is now a  healthy, funny little girl, that will be loved forever.

Pajama ice cream party

First ice cream cone

She loved it! Madalyn showed her that the cone part was edible, too.

Pictures from Day 4 and 5

Here are some of the pictures posted to the facebook page by our therapists.  It looks like they are having a great time.  Notice Josephine still requires a lot of assistance to work her right hand. 

Both girls came home with exercise assignments for the weekend.  We will work on that tomorrow!

She recently began  saying "cheese" for the camera! If only she would look for more than a split second!

She is painting a wooden train.  She has carried this artwork around all weekend.   Look at that sweet expression!!

Madalyn's new buddy at camp.  A boy...to run hard and fast with!:)

Fun Friday

Day 4

Because Josephine has adjusted to her cast at camp, I felt like she could handle more casted time in the afternoons.  

So today after Josephine enjoyed her snuggle time with a bottle of milk and a nice nap, we headed to the zoo for some additional cast time.  It's easier to keep a cast on when there are lots of fun distractions.  I was nervous about how she would respond, but she  willingly helped me place her arm in the cast with no complaints!!  Then I followed her around and tried to entice her to use her right hand.  Later, we ate at the hotel, which you can see in the below video.

Madalyn didn't want to bring home her cast and that was fine with me since she uses her hand naturally in daily bilateral activities.

http://www.youtube.com/watch?v=Z6uGeRoiC2U 

American Girl Dinner

Tonight we went to the American Doll Store with our friend, Amelia Jane and her mom, Leah.  Leah surprised my girls with a set of PJs that came with matching gown for the dolls!  They are both sleeping in them, with dolls beside them now.

I bought Josephine her first American Girl doll.  When I handed it to her, she immediately cuddled it.  When the waitress put it beside her at the table, she pretend fed it with the miniature cups they provide.  Several times she leaned over and hugged her doll.  I can't even describe how this child melts my heart!

Josephine "reading" the menu

Madalyn was very excited about going to the American Doll Store even though she is not really into dolls and such, except for the fashion part of it....so, we bought a cute sundress for her and her doll.  She spent most of the time picking out a stuffed dog for her doll....as always, she is much more into stuffed animals than dolls:) I'm so proud of my sweet girl for her love of animals!!

Day 2 CIMT Camp

Both girls had a good time at camp on day 2.  Madalyn is complaining about the cast a bit, and is experiencing a little bit of dread, but at the end of the day she is smiling and says she had a good time.  I do think it is harder on the kids as they get older.  However, while riding in the car she excitedly told me she crab walked to get her cast on that morning.  She said "I can do it now".

The therapists are adding E-stim to the activities, and plan to use it on Madalyn's Triceps.  I'm happy they are trying this because strengthening Madalyn's left triceps is one of my primary goals for her this year. 

I'm also excited that the therapists  are incorporating a program called "therapeutic listening".   It is used for a wide range of  issues that are common to children that have had strokes.   The therapists are trying it on Madalyn to see if it will improve her attention and hyperactivity.  You can read more about it here:  http://www.vitallinks.net/ . The therapists will assess each child and if the program appears to help the child, will suggest we pursue the therapy at home.

Today Carol, the PT, was at camp working with the children along with the  OTs.  Her comments about my kids were this:   Madalyn is a FAST runner :) and Josephine is doing GREAT for a kid that just started walking!

 Today the therapists used Kinesio tape to try to support Josephine's wrist.  Besides gaining the ability to weight bear, one of the first goals for kids with hemiplegia is to position their wrist in a neutral position.  The spasticity causes it to drop, which makes it even more difficult to open the fist.  So, a lot of the exercises for all the kids are exercises using a vertical surface.  Painting on a wall/easel, shaving creme on a window....all of these things are trying to get the wrist to a neutral position, so that finger function may be gained.

The therapists all comment that Josephine's arm/hand is significantly involved.  But, I can already see it relaxing, and I do feel there is less clonus than before.  Time will tell if I'm just being optimistic, or if these changes are already happening.....

Day 1 CIMT Camp

Madalyn's group

Madalyn's good friend from last year, Amelia Jane

Josephine being casted

Playing light bright with left hand

Lunch time at camp

This is the therapist she ran to for a hug when we went back to pick Madalyn up

We had an appointment at 2:00 pm on Sunday for casting and pre-camp testing.  Josephine cried during casting, but was easy to hold still.  However, by the time it was her turn for testing, she was not happy, and therefore, did not perform well.

Madalyn did great for casting and testing.  She is a pro at this!

On Monday, camp started.  We ate breakfast and then drove 30 minutes to camp.  Madalyn walked right in and got started.  I walked Josephine to her room and told her "mommy will be back".  These words usually work quite well for her, as she will nod, say "back", and give me a big hug.  Today, she was a little apprehensive and instead of a hug, she held tight to my knee.  But the therapists gently pulled her in and began playing with her.  I told her "bye", she nodded, and I left.

Amelia Jane's mom peeked in on her a few times for me before I left and she already had her cast on and was happily "playing" right hand activities!

I picked Josephine up 4 hours later and she was happy and exhausted!  She had a great day.  

Two hours later, Josephine and I went back to pick Madalyn up.  Josephine spotted her therapist from the morning and RAN up to her and gave her a big hug.  Then she ran back to me grinning.

Madalyn had a great time at camp!  Her therapists said she did very well, with no problems at all.  Yeah!!!!

I left a message for Madalyn's doctor because I'm concerned about her tummy aches that started with the new medicine.  She also has gained quite a bit of weight in just a couple of weeks.  I'm not sure if it's fluid, or weight gain, and her tummy seems distended.  A nurse just called me back and our doctor and her nurse are out until Thursday.  So, unless it gets worse, I'll wait until Thursday to see if I need to do anything.