Dr. Parker's nurse called back yesterday afternoon and thought the event at church was suspicious.  Therefore, she recommended we increase the night dose of Vimpat by 50 mg.  I'm cautiously excited to say that with that dose last night, Madalyn was dry for the first time in months.  We have had random nights of dryness, so I'm really trying not to be too optimistic. 

Madalyn update

Madalyn had a possible small seizure during Christmas Eve Mass.  She was being fidgety (normal) in mass and then she layed on my mom.  Her eyes were opening and closing (slow flutter) so I thought she was pretending to sleep.  Since she was finally quiet and still I told my mom to let her keep pretending.  About 3 minutes later she sleepily changed positions.  I had been suspicious since she first layed down, but I was getting more concerned so I asked her where she was.  She told me church.  I waited another minute and asked my mom if she thought she could stand.  My sign that it is a seizure has been when she cannot stand during an episode.  We decided to leave church and see if she could stand.  The first few seconds in the church foyer I don't think she could.  She had a dazed, confused look.  We were headed to the car to get the Diastat in case it progressed, but then she came out of it and asked to go back to church, so we did.  If it was a seizure, it would be a simple partial seizure since she did not lose consciousness and she remembers the whole event. I have left a message for the neurologist to see if she wants to adjust her medications, or schedule an EEG monitoring.


 In August Madalyn was doing much better because we had gotten off Keppra and onto the therapeutic dose of Depakote.  Her teacher thought everything was fine.  She started taking tests in first grade, and it became apparant that she was not grasping concepts.  A pivotal moment for me was after working with Madalyn over the weekend, I emailed her teacher and said "is it supposed to be this hard?".  Her teacher, replied, "no, it is not supposed to be this hard".  I felt relieved that my concerns were validated.

I emailed her neurologist and her neurologist suggested we try ADHD medication because strokes and seizures often have problems with attention and hyperactivity.  The first few weeks were awesome.  She went from getting in trouble nearly every day at school, to being a model student.

A few weeks later, I realized it wasn't just that she was not gaining academic concepts, she was losing them, along with the ability to remember lyrics to songs she once knew.   I also realized she was unable to follow simple conversations.  I was panicked.  When I asked her teacher for her insight,  she told me that Madalyn works 10 times harder than the other children, but can't grasp concepts. 

I researched all her drugs (as I have many times) and decided she likely had the side affects listed for  Depakote of "memory loss, confusion, and dementia".  I was also concerned that the Focalin may be causing more spiking.  After trying unsuccessfully to get in touch with her neurologist, I made an appointment with our pediatrician.  He was also concerned, and agreed to call the neurologist for me the next day.

The neurologist felt it was not likely that Depakote or the Focalin that was causing the issues, but instead that she was likely having more seizure activity than the EEG showed.  Therefore, she suggested we add Vimpat to her seizure medicines.

I'm happy to say her neurologist appears correct.  She is again able to reason through some easy addition and subtraction, as well as sing songs.  She seems much sharper, and seems able to comprehend our conversations. I am, however, concerned that she may have had a seizure on Christmas Eve on the therpapeutic dose of two seizure medications.  I left a message for her neurologist and will post her thoughts when her nurse calls.

During the months of regression, we had a neuropsychological evaluation.  At that time it was found that she may need modified curriculum.  I initatied a ruling for a 504 plan  from Madison County to change to St. Richards Special Kids program. Because her issues fluctuate, I do not know the extent she will need the services.  But, I feel it is best for Madalyn to have an IEP and support services available when she does need it.  And lastly, I want the support and community of the "special kids" program for Madalyn and me.

Merry Christmas

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Minnie UP!

Click on the YouTube video of Josephine:  Minnie UP .  

This Christmas

 





Christmas 2005 I had just returned from meeting Madalyn in Guatemala and had 3 more months of waiting before she could come home. From I-600 to referral, then Dossier to DNA, through PGN and cable, then pink, she was finally in my arms forever!  Christmas 2006 was our first Christmas together.  It was awesome!  Christmas 2007, 2008, 2009, and 2010 were full of blessings, but passed too quickly! 

 

 Christmas 2011 we were back in the waiting place.  I found Josephine's picture on Rainbow Kids during the summer, and although Christmas was fun with one, I was aching for Josephine. She was waiting in a place without a family, and without a Christmas.  There were many thoughts in our heads.. how would she adjust, what would she be like, how would my oldest child feel, how well was she being cared for, was she warm?   But, mostly.....how many more days until we can go get her!?!  Through LOI, I-800A, LOA, TA, until FINALLY, in March, she was in my arms forever!

 

 Christmas 2012, we are all together, and free from the the waiting place!  And though it took Josephine some time to adjust, she is happy, smiley, funny..and cherished, adored, and loved by all that meet her.   To all the families in the waiting place this year:  Prayers and hope that you are together super soon....and that your waiting children are safe, warm, nourished, and taken care of, as best their caregivers can, until your forever day.

 

 

 

 

Josephine can climb and slide all by herself!

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Josephine's first Thanksgiving

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Happy Thanksgiving

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At the park

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Josephine and Pap

Hard at work-taking initiative to work right hand

 

 

While reading with Madalyn tonight I put Josephine on my bed with Barney on the TV and the IPAD within her reach. Great mom moment, right?  Anyway, I went to check on her after Madalyn read her two books and this is what I found.  She had opened the program we use every night to work right  hand. 

 

And she was working right hand on her own!  Normally I hold her left hand to entice her to touch with right hand.  Then I press the "next arrow" and we go to the next one.  When I peeked in on her, she was using left hand to press the arrow, but then making right hand do the work...Here is a short video of  my precious baby girl working:) Also notice her love for Barney and Baby Bop when she looks up and exclaims "Bop" midway through the video....    http://youtu.be/xw2bVdlocvc

Princesses

So proud

I vaguely remember Madalyn asking me how to spell "sticker", and a few other random words last week.  Last night, I found the cards she must have been writing, along with  a sealed envelope to her teacher.  I'm so happy  that she is proud of getting stickers, but I must admit the cards made me sad thinking about the many times she didn't feel proud for the numbers she got several times per week. Since starting Focalin, she has had smiley faces each and every day.  I hope the medicine continues to help her do "good listening" at school and home. 

Josephine-words, and botox

Josephine is doing very good.  I was excited the other day when she put two words together.  She was pretending to put a purse on her shoulder and go bye bye.  She closed the door and said, "bye bye mommy". 

She is saying lots of words, like up, stop, no, dog, eat, bottle, toy, tree, flower, ball, bye bye, Jesse (for a TV show she likes), Barney, ouch, book, read, apple, hotdog, baby, all done, more, weeweewee (for requesting "this little piggy went to the maket"), peekaboo, yumyumyum, open (pronounced "oppa"), wash (used for washing floor dishes, her face, and her nose), night night, amma, nana, sissy, Lynda,...and I'm sure lots more I'm forgetting.  She still says "thank you" in Mandarin many many times per day.  It makes me smile every time she says it!

I'm still concerned that she has not started stringing words together, as plenty of other kids home from China, her age, have done.  However, I do know that sometimes kids with strokes just take longer to get there.....but, they often, do make it all the way.....in their own time.

The tightness and jerking in her arm is still significant.  Therefore, we tried botox last week.  We should start to see it loosening up this weekend.  She did great, and Dr. Veda did a great job of getting all the shots done quickly!  She screamed during it, but recovered quickly afterwards.  I didn't pass out during it, so it was a successful afternoon.

As we were leaving, I saw a doctor whose name tag I recognized from the bottom of some of Madalyn's EEG reports.  I told him I recognized his name as the doctor that wrote our EEG reports, and he asked me if I wanted to see her EEGs!  I said YES.  He then pulled up the actual EEG on the computer, and showed me how you can tell which waves are spikes, and what the other stuff means, such as eye blinks.  I had tried to figure it out by googling it and never understood.  But after showing us,  my mom and I were able to look through and successfully pick out the spikes.  The spikes to me were the pointy, and less rounded ones....now  He  also said quantity, frequency, and size of  of spikes do not correlate to how often a child will have clinical seizures.  I  knew this, but always want to know more! 

Just like an MRI will not predict the involvement of a child's motor deficits,  learning, behavior, or speech difficulties,  an EEG will not predict the severity or frequency of seizures.  It still seems like enough studies could find predictors,  but perhaps they aren't reliable enough to use.  Or maybe they are telling me the whole truth and there is no correlation.  Although I know it doesn't matter, it's one of those things you wish you knew about your kid's future.

First grade is hard

First grade for Madalyn has taught me a lot.

Best news first.  Madalyn loves school.  Her teachers and peers love her, and no one would know she is struggling with reading and math based on playing with her, or having conversations with her.  She interacts great!

I never knew the path that led parents to say "children don't come with an instruction manual".  They weren't being funny, or even creative when they said it, they were feeling a little lost as they researched, asked, thought, and fought for the best ways to help their kids ultimately be healthy, happy, succesful, educated people of the world.

Also, I have a new appreciation for my friends that have walked this path before me.  I didn't realize what the months or years of struggles, of not keeping up with their classmates,  never making it to treasure box, and even being sent to the principal's office felt like for the child or the parents.

And then there is this new math stuff.  I never thought I would enjoy sitting at a child's table with an abacus and a million worksheets, trying to explain that 5 groups of 10 make up 50.  Or that 31 is 3 groups of 10 and 1 left over.  Only to discover that counting to 100 is still the issue, and that her class is now to numbers to 120 counting by 2's.  But she is my favorite student to work with because she will sit and try and try and try.  All the while with a proud grin on her face, even when she doesn't understand.  She's just proud to be sitting still and trying!  I'm hopeful for her future because she is learning and making huge progress.  However, her progress isn't  fast enough which leaves me with a lot of work to do to determine what's best for her.

Her teacher is also working hard to determine what is best during the school day.  She failed the new required dyslexia screening test, which may allow her to join the 2-3 year 3-5 day per week Dyslexia program that is offered at her school.  My theory is that making connections through this program, could help make connections that could help her in all areas, including math.  The book, "The Brain that Changes Itself", is very uplifting, by explaining how  our kids can overcome learning issues with the proper brain exercises! Basically when you intensely tackle one learning difference, such as Dyslexia, it can "fix" other areas as well.  I am so hopeful about this for Madalyn.

Her neurologist recommended we try ADHD medicine since her seizures are under control.  It's common for kids with strokes and kids with epilepsy to have problems with memory and concentration; Madalyn has both a stroke and seizures so ADHD medicine may help her.  She started Focalin 14 days ago.  So far her teacher feels it is helping her.  She has received a smiley face all 9 school days since beginning it.  This is her personal record!  She made her first passing grade on her  comprehension test on Friday.  Unfortunately, her Friday math score remained the same, around 50%.  But, reading at this point is most important, so I'm thrilled with this tremendous progress.

Next month she has an appointment with an educational psychologist that specializes in strokes and seizures.  He will do testing to see if she has any learning disabilties.  Last year's testing showed some rather large discrepencies between Verbal and nonverbal and math, which could point to learning disabilities.  I suppose most lucky would be if it is Dyslexia only, but regardless, knowing the testing results will help her get what she needs to be successful.  Until then, as Dory says, will "just keep swimming"  Or dog paddling, as it feels like right now!

September 22 - Happy 7th birthday Madalyn

 

 

She is 7 years old!  Time has flown.  Only yesterday she was a picture I carried everywhere, dreaming of the day she would join our family. Next she was a tiny baby I was visiting in Guatemala.  Finally, a few months later, we were flying home together.  

 

Now she is a first grader and a big sister, keeping me on my toes, but always amazing me with her beautiful smiles, and her amazing personality.  She brings excitement and optimism to ANY situation! 

 

She loves cheers, singing, pep rallies, football games, crafts, birthday parties, coloring with Grandma, playing "bear" with Pap, making Josephine giggle, potato chips and sprite, tennis lessons, swimming, Aunt NaNa, stuffed animals, making cards with fancy letters, pillow pets, country music, and eating at "Old McDonalds"....

 

 



More immunizations

We have to repeat all of Josephine's immunizations because she didn't show antibioties for at least one disease for which she received the vaccine in China. Between normal colds and viruses she keeps getting, it's hard to get caught up!

Let's hope her cold is much better and she can get them today.

Madalyn on the field pre-game

Madalyn faced her fear of the Bulldog mascots and went on the field with the other kids and cheerleaders. She loved every minute of it.

She has a love-hate relationship with mascots and characters. She is afraid of them but will seek them out to shyly wave and wait for the praise of being so brave. She's been doing this for years..it makes me laugh...

First football game

She loved cheering. She did a great job of clapping using her right fist and left hand;something she wouldn't try before CIMT camp.

Driving

Madalyn's teachers and class sent her balloons, so sweet!

Dr. Parker came by this afternoon and all the news was good.  There is much less spiking than before the medicine.  Last year, she had spiking more frequently than every 10 seconds in the  occipital, parietal, and central lobe.   Now, it is rare, and mostly from the central lobe only.  Her nighttime activity is even less, which means she is getting good sleep.

I'm thrilled with these results.  This means clearly her improved attention, focus, and behavior is because the spiking has been greatly reduced.  Yeah!  Medicine does not always make an EEG look cleaner..sometimes it controls clinical seizures without reducing the spiking.  But, in Madalyn's case, the medicine is controlling the seizures, and helping the spiking.  Yeah!!

Look what Aunt Nikki brought!

Coloring

On the way to the EEG

I finally told her this morning and she only cried for a minute. Then she was into planning what all she could get....McDonalds was her top priority.

Another good day

Cross your fingers, it's almost Friday and so far Madalyn is on track for treasure box day. It's crazy how much 5 days of smiley face stickers make me happy. Oops, they only had school 3 days this week, no wonder! But nonetheless, maybe she will get treasure box.

We had an easy going night, and even corrected her math test, and re-wrote her homework to correct the letters to match the example sheet. She sometimes makes capital letters lowercase by just making them smaller, which isn't the way it's supposed to be done. No meltdowns! Good concentration! I'm starting to think I might actually survive the next 12 years of her education career:)

Madalyn update-it's all good:)

So, we got to the therapeutic level of Depakote (Madalyn's seizure medicine) about 3 days before school started.  Once we did, I saw a tremendous change in her.  But, each time I got ready to write about how great life was, we would hit a bumpy area.  The last bumpy area was when she got a sinus infection.  I called all the doctors, panicked that we were heading down the dark road again.  For two days, she had some long tantrums.  She wouldn't read.  She couldn't sit still.  I really thought the antibiotic was interfering with the absorption of her Depakote.  But, the nurse at her neurologist's office told me that oftentimes seizure activity gets worse before, during, or after an illness.  For Madalyn, it appeared right after.  I reminded her I had not seen any seizures, but she  felt like the return of the symptoms was related to increased spiking from the mild illness.

Fast forward to this weekend. She drew pictures and made sweet cards for her family.  She colored.  She was sweet and calm.  She read a book to me.  Temporarily having  a child that is physically unable to sustain any activity without a meltdown, makes me fully appreciate and know the true joy for her when she is able to do these things.

Last week her teacher told me she is doing great in first grade!  She does not see ANY attention problems:)  She thinks her reading is fine, and she has no problems getting her work done.  I was so relieved and excited to hear this!    

When she had to get off her medicine, her writing was messy, her coloring was scribbled.  Her swim stroke was a messy paddle.  Her face looked like it had a dark cloud over it.  She clung to me when I brought her to camp.  She would not look at me....no eye contact.  When I took  her to the gym, the people she had been greeting and talking to since she was a baby, she would hide from.....It got to the point they would  look at her face, and shrug their shoulders and say "she's in one of her moods tonight, isn't she".   She was described by camp as "moody", and "unable to concentrate on activities".  She would beg for things at a store, only to get home and not be able to play with them.   All of that is gone.  The real Madalyn is back, and I am so thankful.  Although I didn't want to put her on medicine, I can say that the benefits outweigh the risks for us.

Her face lights up with her beautiful smiles.  She is swimming better than she ever has before.  She is reading.  She is coloring.  She is drawing.  She has good eye contact and carries on conversations with me.   She looks forward to things at school.  She greets people at the gym, and holds conversations.  And did I mention her face lights up with her beautiful smiles?

Madalyn is having an inpatient EEG next Monday, Tuesday and Wednesday.  This will look at her seizure activity to determine if the spiking has decreased on Depakote.  We know it is reducing the number of clinical seizures she has, and we think it is reducing the spiking based on her improved behavior and attention.  However, she is still needing at least 12 hours of sleep at night, and still bed wetting....this could mean her spiking/seizures could be better controlled with adding a medicine at night, or increasing Depakote.  The EEG will help her doctor make that decision.  Bed wetting could be normal, but because it stopped completely on Lamictal, it more than likely means Depakote is not controlling night time spiking as well as Lamictal did.

We have not told Madalyn about the EEG because she will dread it.  She hates the glue that pulls her hair and smells bad.   She hates the loud blower that tries to blow the smell out of the room.  She hates it when the doctor discusses her (always has).  And she hates being confined to a hospital room.  So, I'll be waiting as long as possible to tell her to minimize her sense of dread!

The rain is finally Here.

Early intervention

Josephine has an early intervention evaluation tomorrow. It will be very interesting to see what level she is on now that she's been home 5 months!

Her first evaluation indicated she was at a 10 month level for most activities. I know she has advanced a lot since May.

However, because of her right weakness she is still expected to qualify for early intervention for Speech, OT and PT.

Thank you mom for taking her tomorrow so I can teach my classes.

Tennis

Madalyn loved her first tennis lesson last Wednesday. She's been asking all week when is it going to be Wednesday again.

Josephine started school (daycare)

She loves her morning and afternoon teacher. And just look what they said about her:)

Swinging

We were told Josephine loves swinging but her first few months with us, she did not. She's back to enjoying it now! More proof that she's recovering from her transition to us, and doing great! I love her smiles!

Swimming

Madalyn is swimming using both arms! ...this is the first time she has been able to do this. She has been working on it every time we have gone to the pool this week and she is so excited to get it!



http://www.youtube.com/watch?v=Yq-RJfVs-ro&feature=youtube_gdata_player


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Seizure?

So, we had already planned a 48 hour EEG next month because of suspected night seizures....but last night, Madalyn woke up, threw up, and unfortunately, the whole incident was suspicious.  I've emailed the neurologist's nurse, and have been waiting all day to hear their thoughts.

I'm guessing she will either recommend waiting until next month, or adding the second seizure medication, increasing Depakote, and/or moving the EEG to this month.  We scheduled the EEG for next month because Dr. Parker will be on call during our stay, which is a great way to connect and learn her thoughts about the EEG as  it is taking place!  But, if it needs to be done sooner....we will....

Gosh, it's hard to wait for the doctor's nurse to  call back!!  Here's hoping she calls back  today, and I don't have to wait all weekend not knowing!

Josephine kissing our cat

She meows over and over to Alex every time they are together. She really likes cats! And Josephine's meow is the sweetest sound I've ever heard!

Josephine's first trip to our Children's Museum

First grade!!