Progress

I love how Josephine snuggles into me, and when I pick her up after she's been down for a few minutes, she always initiates a squeeze around my neck.  In the morning I find her quietly sitting up, patiently waiting without a sound, when she sees me she exclaims "mama", like I'm the biggest surprise of her day.  I love how when she's snuggly and sleepy next to me, she pretend feeds me, and I laugh when she does the same to our dogs, who really don't get the game....and are disappointed when there's not really a treat in her little fingers.  I deep breath to find patience at 3:00 am when one kid wakes the other and they start giggling and laughing wildly, and remind myself that if they don't get their 11 hours of sleep, life goes on:)

Josephine is taking more and more steps by herself, which is great for her confidence.  She is still not very balanced, but it's nice to watch her be more brave!  Language has been an area I have tried not to "worry" about, but her reports from China said she was "delayed" compared to others in the same environment, and Dr. Parker warned her damage could be near the speech center of the brain.  So, with those fears creeping in quite regularly, I have been naming objects and describing pictures in books like crazy.  And, in the last few days have decided it's safe to assume some of her sounds are the words they sound like!

Today I said all the words I "thought" she knew and she mimicked each one of them!  So, here they are. 

1. Uh oh
2. Ow
3. Mama
4. MAMA (meaning I want that)
5. Dee Dee (our dog)
6. MA (Madalyn)
7. Rabbit (not sure she really knows what this is, but she will repeat it every time)
8. Pap
9. Up
10. ice
11. Water

Today's orthopedic visit

Today Josephine met Dr. McCluskey. He noted that her tone pattern was somewhat unusual since her arm is tight, but her leg seems almost low tone. He wrote a prescription for a night time hand brace and a lift in her left shoe since the brace makes right side higher.

He thought her arm looks good because though she keeps it fisted, she has good range of motion. And when distracted it will loosen up.

He would expect her to be walking based on the flexibility of her leg, so at this point he just wants to give her more time.

We will see him again in July and he will do X-rays at that point to get a baseline. Hemiplegia can cause hip and spine issues but he wants to let her adjust before doing anything more at this point. It will be nice to spread out some of the medical expenses so I was happy to wait.

He is anxious to see the results from next weeks MRI, and I am, too!

Great results from Echo this morning!

Playing with kids at a birthday party.

Along with the other "special needs" listed on Josephine's file was a congenital heart defect.  It appeared it was listed because the doctors in China saw a hole in her heart at a young age.  Today, she had an echo to look at the structure of her heart, and it looks perfect now!

She had to have this test before the anesthesiologist would put her to sleep next week for her MRI to look at the brain damage. 

Wednesday we have an appointment with Dr. McCluskey, our orthopoedic.  Next Wednesday is the MRI.

We are almost finished with all the doctor appointments!  And so far, everyone thinks she is doing great!

Snuggle buddies

I'm supposed to be grading Accounting 2 tests, both girls have been asleep since 7:30, but just look at what's distracting me! I'm surrounded by cuteness!

Walking freedom

She was so excited to walk by herself! She was screeching "yeua yeua yeua" probably just excited babble, but I know she meant "look at me look at me look at me"

Right hand therapy

In just a few weeks, Josephine has made a lot of progress with her right hand.  When she first came to us, she had no awareness of her right hand, other than to rub it with her left hand.  She was not able to consiously move it.  With gently holding her left hand, and enticing her to touch touch toys (and praising if "any" movement happened, she began to be able to move it forward and back, but no movement at the elbow.  Tonight she found a bowl of jelly beans at my parent's house, and she was able to move  her arm back and forth, as well as up and down, including the elbow! 

I'm still working on getting her to bear weight, even if just on a bent elbow.  So far, that arm collapses if I place her in any weight bearing exercise.  I'm not sure how that skill will emerge...but will keep trying.  After that skill emerges, I am hopeful some opening of the fist may occur.

Of course, her therapists will work on these goals as well.  However, 1/2 hour per week will not be enough, so lots of home therapy will be needed.  Unfortunately, as much as I want to get her into an intense summer program, I have to wait until she has had more time to adjust and bond to us....so, I will hold off until the following summer.

Josephine's sister, Madalyn has been able to gain almost full function in bilateral activities, thanks to early diagnosis and  therapy that began at 9 months.  And even more importantly, each year since she was 2 she has participated in  4 weeks of 7 hour per day Constraint Induced Movement Therapy.   We will never know how much of Josephine's starting point is attributed to lack of therapy at a young age, or just location of her stroke, and her individual brain's way of re-wiring.  However, since Josephine has full use of of left side, and will no doubt continue to make gains in her right side,  I'm sure she will be able to do all things she wants to in life!

So, as you watch the video, remember this is just her starting point.  She will  make huge gains and will learn to be motivated by the independence and sense of accomplishment each fine motor skill gain will bring!

Here are the videos that shows Madalyn's starting point...and where she is now.....

http://www.onetruemedia.com/my_shared?z=2c24c943149b444adc0c91&utm_source=otm&utm_medium=text_url

M&J at Hammils

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Begin forwarded message:

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First dining experience at Hammils

She enjoyed catfish, yams, corn, and rice!
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Begin forwarded message:

From: Carolyn <car9834@yahoo.com>
Date: April 13, 2012 8:21:17 PM CDT
To: Cheri Bergeron <tobythedogb@yahoo.com>

Sent from my iPhone

Life is good

My mom watched Josephine today while I taught my classes.  This afternoon my mom "face timed" me while I was at work and when Josephine  saw me on the phone she said mamama and waved at me!  Then I blew her a kiss and she took her little face right to the screen for a slobbery phone kiss!  Not bad for an almost two year old that just met me 22 days ago!

                        

The first moment she saw me.  The rearing back happened often the first two weeks. I asked the orphanage about it...and they said it was not typical behavior for her....this put my mind at ease because I was worried that my new child often threw herself perilously about multiple times per day! But knowing that she was just trying to get away from me was understandable....and temporary....and now, she hasn't done it in at least 10 days!

Nervous-both kids and mom too!

So much more trusting...and laughs more and more

My mom had a mandatory meeting this morning, so my dad was left in charge for a few hours.  I was quite apprehensive about how Josephine would handle that, but she was happy and content.  It's a good sign that she refuses to go to all "strangers" (i.e. our friends, etc.) but has no problem with our immediate family (me, Madalyn, Aunt, grandma and grandpa).  As suggested,  I'm with her as many hours as possible, and I limit people holding her that are outside our family...but since I have a few more weeks until summer vacation, it's a relief to know she is happy when I do have to leave her with family.

Tomorrow we pick up her leg brace from Tony!  Then we will shoe shop to get her two sizes of shoes...one small for left foot, one larger for brace foot....what a difference a little experience makes.  Six years ago I first shopped for Madalyn's brace.  I didn't know how or what kind of shoe fits a brace...and I was so worried about how wearing a brace would be....this time....my only thoughts are that it will help her walk and help her foot grow properly....It's all good!

She had her first PT session and an OT and Speech Evaluation this week.  She still tests in the 12 month range.  As expected she spent most of the two hours crying.  It's going to take a little while before she gets to know Beth and Kristen and is willing to work for them.  It's hard not to scoop her up and postpone all the work that needs to be done....but, she needs it now...and they are warm and gentle with her, and I will stay in the room as long as I think she needs me to.  Unfortunately, I think having mom in therapy makes kids more emotional....but for now, I wouldn't dare abandon her to people she is afraid of.

I am feeling more optimistic about her progress in non-motor areas because she has  made giant leaps in the 14 days we have been home!  She is already understanding a lot of what we say, she is copying more and more words, and is mimicking us more, etc. 

Most moments I am in awe of how fortunate I am to have 2 awesome (but opposite in every way imaginable) little girls.  Sometimes I almost forget Josephine is really home and not just a picture in my computer.  Then when I remember it's REAL, I get excited all over again, like I did when I first knew she was meant for our family...or when I first held her in my arms....or the first time she said mamama......or the first time I looked in my backseat and saw two girls, or the first time she got excited when she saw Madalyn....so many huge moments in such a short amount of time.

Most people's first question to me is...."how is it with two".  Or the comment that I hear multiple times a week...."you'll certainly be busy with two as a single mom".  I generally say, "so far it's just how I expected it to be".  But the truth is that for about two years prior to this, I planned and thought about how it would be with two.  When I rushed in the morning, I would mentally plan for two...just to see if I could do it.  When I paid for the dentist for Madalyn and me, I would calculate what it would be for three of us....When Madalyn threw a fit at a store, I'd plan what I would do with a sibling.  All those subconscious exercises seem helpful, because so far, it's just exactly how I thought it would be:)  Maybe even better!:) 

Cheerios

Strolling

Swinging

Hats

Park

Driving

Bath time

Loving her veggies!

Her order of preference tonight: squash, broccoli, chicken, then sweet potatoes.

PT evaluation

Josephine had her evaluation with Beth today. Doesn't the picture look like the two will work well together! Beth has been so good to us and I'm excited to start working with her to help Josephine gain mobility!

Beth is very knowledgable and noticed and explained a lot about the way Josephine has compensated for her weaknesses. She is setting goals to help her improve her strength and balance. We start therapy next Wednesday!

The best way for Josephine to gain the most function is to start back at the beginning with core strengthening, crawling, and then walking. Josephine will resist this because she is too young to understand why.

I remember well the tears Madalyn had when forced to work hard before she was old enough to understand. But it's so worth it! As soon as Madalyn mastered sitting up it was like she understood the purpose and she has worked hard ever since. I hope Josephine will find the same determination from within!

More good news

The EEG showed no signs of seizure activity or spiking! Yeah! Just slowing in the left hemisphere which is totally normal for a person with a brain injury. This is great news!
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Picking sister up from school

Yesterday, Josephine and I went to pick Madalyn up at school.  Josephine saw Madalyn walking towards us down the long hallway.  She started kicking, and scrunching her nose in her unique and precious grin.  Madalyn ran towards her, and Josephine lunged towards her for a big bear hug.  Madalyn hugged her back equally as excited by the greeting.  Madalyn beamed, and I teared up.

Everyday, I point to Josephine, and I tell her this is "your family".  I am your mommy, this is your sister, this is your grandma and pap, these are your dogs, this is your house.  And I do think she knows Madalyn is HER SISTER!

So sweet!

Eating

From spitting out everything but yogurt 2 weeks ago to feeding independently!

Good news from appointments today

Today we met with Dr. Parker, our neurologist.  She was very encouraged by Josephine's development!  She noted that her arm is more involved than her leg.  This points to a particular region of the brain that is close to speech.  We will watch that closely.  She noted that her emerging gait looks good for a child with hemiplegia!  She does think Josephine will be able to develop some use of her arm and hand!  YEAH!:)

Dr. Parker wrote the prescription for her AFO. I'm so thankful we don't have to wait for the appointment with the orthopedic for that! Tony (our orthotist) scheduled a fitting for Friday! She will be walking more independently soon with the stability of the brace.


She had her EEG today.  We won't know the results until tomorrow.  We are praying for NO seizure activity or spiking.  She has some jerks in her affected arm which could simply be secondary to clonus (that would be good news), or could be simple partial seizure activity (that would require possibly medicating, which is okay, too).  The important thing is she is here and getting the care ALL KIDS everywhere in the world deserve:)

The picture above was taken today at her EEG.  As they glued the wires into her scalp she screamed, cried, and kicked.   Once they were finished she quieted down. I layed down next to her to help her fall asleep for the test. She rubbed my head, and stroked my hair. Then she pretended to feed me and pointed to my mouth and nose.  Someone special loved on my baby before I got her and I am so thankful for that.

Next she reached her little arm up for a tight hug and closed her eyes and fell asleep for the duration of the test.

Our PT is evaluating her on Wednesday.  She worked us in super quick, and I'm so grateful

My house is going to bed now.  Noone is sleeping due to China time these days.  Maybe tonight will be the magical night of rest for everyone!