Stroller swap

First trip to our zoo

Her first trip to the zoo was in China. At that point she had shut down so much she didn't look at a single animal. That was our last week in China and she was still rearing back away from me and did so on the train. She hit her head hard on the metal railing. Everyone on the train heard the hard hit and stared at us as she screamed in pain.

Just two months later, we visited our zoo. She is pointing at the animals and even making adorable meow noises to the tigers:)

Corrected link to Madalyn's therapy

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

Change of summer plans

www.constrainttherapy.com  tells about constraint therapy
www.constrainttherapy.com/photos.htm Pictures from last year's camp
www.onetruemedia.com/my_shared?z=2c24c943149b444adc0c91&utm_source=otm&utm_medium=text_url Videos that highlight the progress Madalyn made from this type of therapy (see video "Acquire Therapy")



The camp Madalyn attended last year is in July this year.  All year I have been adamant that it wasn't right for either of my girls to go this year.  Madalyn said she didn't want to, and I felt like she was getting old enough to make some therapy decisions herself.  And I felt like I needed to spend every moment with Josephine before starting back to school.

However, I've returned to teaching aerobics and have been leaving Josephine and Madalyn in the nursery for 45 minutes to an hour most days.  Josephine cried for a few minutes each time I left her in the nursery, but it got shorter and shorter each time.  The last time I left her, she clung to my neck, but then reached out for the nursery worker without crying.  I feel like she undertands mommy will be back in an hour.  She is also very excited when I do return.  She goes to me for all comforting and is very loving and has good eye contact.  All of these behaviors lead me to believe she is attached and secure enough to handle the therapy.

The camp is outside of Atlanta and lasts 3 weeks.  For for her age the ratio of therapist is 1:1 and is just 4 hours long.  The director understands Josephine has only been with me 2 months, and my related concerns.  She will let me decide if it's best if I stay or go, and if the time needs to be adapted for Josephine.  The children wear their cast only during the camp day.  Therefore, there will be no stress after camp hours, which means we can resume normal bonding and napping time when she's not in therapy.  This is different than the CIMT Madalyn did at a young age, so I will be very interested to see the gains Josephine will make at a less intense camp.  However, I really feel like this is the perfect option for her at this point.  And truthfully, I will never be able to compare progress and types of therapy because each child is different. Right now she cannot bear any weight on her arm without it collapsing, and she cannot release an object, nor consiously move her fingers and thumb in any way.  She does not use it as a helper hand.  It also does not  extend to break her falls, so she usually lands on her face.

So, my goals for Josephine, which I think are realistic, are to be able to open her hand to release an object, and bear some weight on her arm.  I would like the clonus (muscle jerks which happen often, especially when you touch her hand,  when she moves it, or falls)....to lessen....and time will tell if that happens with increased strength and function.

As for Madalyn and her decision....this whole change of plans happened when I had a dream last night that we happened to be in Atlanta and ran into everyone from camp last year.  In my dream, they told me it was the first day of camp, and I thought it very odd that we happened to be in the same hotel on that day without intending to attend camp.  When I woke up at (at 4 am), Madalyn was awake and I told her about my dream.  She seemed receptive.  I asked her if she would go, and she said yes.  Though I asked her initially, now that I have decided, she will go regardless of her changing emotions about it.  She had a great time last year, and they have even more fun activities lined up for the kids this year!

 My goals for Madalyn are individual finger movement  to increase liklihood that left hand can  help when she learns to type and increased tricep strength so she can participate in the crab walk in next year's decathalon.

I can't tell you how excited I am that we are going next month!!! Our friends from last year will be there, too. We will stay 3 weeks in the same extended stay hotel that allows our dogs to be with us.

Sleeping

First time Josephine has slept in her bed! Hoping to make nap time more successful by getting her used to her room.

I went to Madalyn for some alone reading time but she had fallen asleep too! Madalyn's doctor increased her seizure medication and it must have made her tired! That's a nice side affect at bedtime, but I'm sure it won't last:)

Guess I have alone time for the dogs and cat now! They will be excited about that:)

Corn

As Madalyn said tonight, "we have another corn fan here!"...

Corn at grandparent's house

She loved it! First she tried to take a bite vertically but she quickly got the hang of it and ate 2 pieces! Maybe this year I'll do better picking the corn my dad planted in my back yard before the worms eat it all!

First time swimming for Josephine

Decathalon day

PT

Homework this week is one legged kneels and goals at therapy include gait training on the treadmill and strengthening right arm to crawl.

Words and backwards waves

Citizenship

New Medicine for Madalyn and more tests for Josephine

Madalyn's rash finally went away enough for us to start her next seizure medicine.  It's impossible to know which medicine will be best for individuals, so a lot of seizure management is trial and error.  We are trying Keppra.  I am very optimistic that it will be a good drug for Madalyn.  I was hesitant when we first started medicine a few months ago because it slows the brain waves down....which can affect learning.  However, after seeing the progress she made on Lamictal, I am more than ready to try this.  She had her first dose last night.  Unlike Lamictal, we could see some changes quicker than with Lamical!  We do gradually increase the dose, but not as slowly as with Lamictal.

Dr. Parker called me about Josephine's MRI.  She had recently returned from a convention about childhood strokes.   She said that given Josephine's MRI (she described as "classic MCA Ischemic event versus Madalyn's hemmorhagic stroke") about half of the physicians would recommend further testing to search for underlying causes that may need further medical management and half would not.  Given those numbers, I chose further testing.   I would not want something catastrophic to happen in the future that could have been prevented.  However, the testing involves anesthesia and possibly the use of CT, which exposes Josephine to more radiation than I would like at such a young age.  I plan to talk to Dr. Denney, our pediatrician, about it today.  I am not worried about anesthesia, but I do worry about radiation and the risk of cancer when she is an adult.

Water play

Sleeping

Sweetest face

Hugs for Angie

Josephine meets Josephine!

Her day

She gave out a couple of hugs. A bunch of high fives, and all the bottled waters to Mr. Rule! She's already a little hostess:)

Beautiful cake-thank you Jacqueline and your mom!!

Josephine was a great little star at her meet and greet!

Telling Robert all about something!

Getting ready to meet mommy's work today!

I overheard Madalyn telling her about my work and that she was "going to love walking around in mommy's classroom".

missing Lamictal, and MRI update

Josephine- Is doing great!  She is so sweet, and I'm  not sure if I've expressed enough to my friends and family just how happy I am that I took the leap of faith and brought her home.  She is a perfect fit for us.  She LOVES her grandparents already!  She can't get enough of going up to Pap for a little rough play time.  She started saying her Aunt "Na Na's" name, and giving her hugs.  She loves water, and says "water".  And her sister is the funniest and greatest person in her world...which, I just love for Madalyn:)

She is walking everywhere.  Everyday she gets more balanced and stronger. 

The MRI...I received the report and look forward to talking to the neurologist at the next appointment, or before.  Most was exactly as I was prepared for..."extensive damage" of left hemisphere.  However, there is one part I need more information on.  It says she has severe MCA stenosis and even mentions another test "if it would alter clinical management".   Thanks to my friend Nancy (Thanks!!) I talked to her brother that is a physician that could give me the "non-googled" definitions of what I was reading.  It seems she has narrowing of the main artery to the damaged hemisphere.  That could have been what caused the stroke, or it could have been as a result of the stroke.  More than likely all of her activity is being successfully taken care of by her right hemisphere....so, hopefully even if means that more damage could happen in the damaged hemisphere it would not affect her.  But, I want to talk to her doctor about it as soon as possible.  She is perfect just the way she is....she is one of the lucky children that survived a stroke (20-40% of childhood strokes are fatal)...we can't afford another stroke though! I don't think that is a true risk...but as a non medical person, that's what it sounded like...so I need to be sure it's a normal part of her type of stroke...with no additional risks of future strokes.

Madalyn's rash is almost gone.  Getting abruptly off the Lamictal has made it clear just how much it was helping her.  I hope we can find another seizure medicine that works for her.  Please pray for no seizures as her body goes through the last days of getting all the Lamictal out of her body and that the rash goes away so we can get back to the happy place we were before last week's allergic reaction!

Day at the Science Museum

Better

The rash is somewhat better.  The new places it had appeared have grown lighter/smaller.  It is still pretty bad on the original places.  I'm happy that it is not getting worse, and actually looks better!

MRI Results and rash update

The nurse gave read me parts from the MRI report on the phone today.   I vaguely remember hearing "extensive damage" and I think I was processing that, so maybe I missed the other details.  I do remember asking if it was localized, and she said no, it sounds large.   So, tomorrow I'll call and ask her to mail me the report....then I'll be ready to ask more questions at our appointment with Dr. Parker in June. I'll continue to remind myself that she is doing great, and an MRI doesn't place limits on these awesome kids.

Madalyn's rash is worse.  It has now spread to her feet, hands, and upper thigh.  It is still on her back (and extends all the way down), chest, around her knees, and over her right shoulder.  The instructions remain the same.  Watch closely for any signs of issues in the mouth, eyes, or mucus membranes.  Unless it improves, I'll keep her home from school again tomorrow. 

Madalyn's chest

Madalyn's back

Best news first

The MRI went well, and we should have results in a few days.  Although Josephine was quite agitated upon waking from the anesthesia, she recovered within the hour and was happy all day.  I met a really neat and inspiring person while waiting.  I enjoyed talking to her, and it helped the wait go more quickly.

Now for the bummer news.  Madalyn had a small rash yesterday. I sent a note to school, reminding them of the risk of "Steven Johnson's Syndrome" from her seizure medicine....figuring I was overreacting, but nervous anyway.  Today, the rash was worse.  I dropped her off at school, and made an appointment for her to see our pediatrician this afternoon.  I talked to Michelle (school nurse and much more!:)) during the day and told her we were going to the doctor.  She looked up our medicine and the side affects to be familiar with the situation.  Did I mention she is awesome?

I picked her up early for the appointment.  At that time the rash was significantly worse.  Dr. Denney looked at it and because it did not fit into any "normal" rash, he felt we needed to call Dr. Parker and probably stop the seizure medicine.  I don't suggest googling Steven Johnson's Syndrome, but if you do you will see why they don't take chances.  Basically, he said that the rash doesn't have to look any particular way for it to become Steven Johnsons, so we have to stop the medicine.  Dr. Parker called him back immediately and agreed.  She reminded me to keep the Diastat on hand in case she has a seizure since we are having to quit without tapering and can't start another medicine until the rash is gone. 

So, the bummer is that we finally got to the therapeutic dose, and now we have to stop.  The blessing is the rash is responding to the Benadryl and has not gotten any worse tonight.  This is good, because if it had gotten significantly worse, or showed up on any mucous membrane, it would have meant going to the ER.  The other good news is that we were able to see Dr. Denney today.  He was able to talk to our neurologist immediately, and we know what to do.  The other huge blessing is that she started with a rash in China that looked similar to yesterday's.  While in China, I emailed it to Dr. Denney and he thought it looked like a viral rash.  And it went away on it's own. I'm so thankful the need to stop her medicine waited until we were back home, with any medical support we may need!

MRI is today

The MRI is today.  Right now my biggest concern is not being able to feed Josephine prior to the test.    I'll distract her, and not let her see Madalyn eat breakfast, but I hate this part of sedation! However, I am so glad that UMC has changed the way they sedate for MRIs.  Madalyn had to drink an alcohol based drink for the MRI that we had to force down her throat.  It made her gag, throw up, and then literally suffer from a hangover for hours.  Now, they use anesthesia, and I'm told it's much easier and safer for the children.  Thank goodness!!!!

The purpose of the MRI is to determine location and extent of her brain damage.   It will likely confirm that her hemiplegia was caused by an inutero stroke.  Her China report said she had "left brain atrophy".  I believe this is comparable to the "volume loss", that is seen in Madalyn's report.

As a comparison, Madalyn's MRI report says the following:
There is noted enlargement of the body of the right lateral ventricle with loss of periventricular white matter.  A tiny amount of residual hemosiderin situated within this parenchymca defect on the right.   Impression:  Evidence of old parenchyma insult with volume loss within the right lateral fontral lobe and ex vacuo dilation of the underlying body of the right ventricle.  This is most likely due to prior grade IV germinal matrix hemorrhage. 

As Madalyn has proven, the best indicator of how well a child will do is how well they are doing....and Josephine is doing great.

Still, I'd really like an optimistic MRI today!

Last month....



 On our way home...with two children that had finally fallen asleep on the long plane ride. 

4 week report due to China

Our first post placement report is due to China since we have been home 4 weeks!  Kenisha, our social worker, came to visit to make sure all is going well.  This will be the first of many reports due to China over the next few years.  Along with each of these reports, all adoptive families  are requird to send 10 current photos.  The pictures go to the government officials in China, therefore, they must be culturally sensitive, as well as place an emphasis on "family life".  Some examples include no food on mouth (birthday party/spagetti pictures), child should not show too much bare skin, child should look happy, and pets should not be pictured too close to child.  Notice in our "backyard baseball" picture, two dogs are watching us; we kept nudging them away from us to get the picture:)

She is walking!!

She is walking!