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


Sent from my iPhone

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!!

Smoky Mountains

View from the cabin



Watching the Smoky Mountain Opry show

Josephine's first amusement park ride

Josephine's first hike up a mountain

On the way home

Article

By Daily Mail Reporter

Lou Xiaoying has been praised in China for saving more than 30 abandoned babies over the years

A woman has been hailed a hero after details of her astonishing work with abandoned children has emerged.

Lou Xiaoying, now 88 and suffering from kidney failure, found and raised more than 30 abandoned Chinese babies from the streets of Jinhua, in the eastern Zhejiang province where she managed to make a living by recycling rubbish.

She and her late husband Li Zin, who died 17 years ago, kept four of the children and passed the others onto friends and family to start new lives.

Her youngest son Zhang Qilin - now aged just seven - was found in a dustbin by Lou when she was 82.

'Even though I was already getting old I could not simply ignore the baby and leave him to die in the trash. He looked so sweet and so needy. I had to take him home with me,' she said.

'I took him back to our home, which is a very small modest house in the countryside and nursed him to health. He is now a thriving little boy, who is happy and healthy.

'My older children all help look after Zhang Qilin, he is very special to all of us. I named him after the Chinese word for rare and precious.

'The whole thing started when I found the first baby, a little girl back in 1972 when I was out collecting rubbish. She was just lying amongst the junk on the street, abandoned. She would have died had we not rescued her and taken her in.

'Watching her grow and become stronger gave us such happiness and I realised I had a real love of caring for children.

'I realised if we had strength enough to collect garbage how could we not recycle something as important as human lives,' she explained.

'These children need love and care. They are all precious human lives. I do not understand how people can leave such a vulnerable baby on the streets.

Lou is now dying from kidney failure. She is pictured here with two of the children she helped rescued

Lou, left, caring her the babies with her husband Li Zin. She would give them to friends and family after she rescued them

Lou, who has one biological daughter, Zhang Caiying and now aged 49, devoted her life to looking after the abandoned babies.

Word of her kind-hearted gestures has now spread in China, where thousands of babies are abandoned on the streets by their poverty stricken parents.



One fan explained: 'She is shaming to governments, schools and people who stand by and do nothing. She has no money or power but she saved children from death or worse.'

'In the local community she is well known and well respected for her work with the abandoned babies. She does her best. She is a local hero. But unfortunately there are far too many abandoned babies in China who have no hope of survival.

Only last week there was news of a baby lucky to be alive after having its throat cut and then put in a plastic bag and thrown in a dustbin at Anshan city, in northeast China’s Liaoning province.

The baby – a girl – was thought to be a victim of the country's one child policy where parents restricted to only having a single child prefer boys and girls are unwanted and often discarded.

Lou, who is now in hospital, has become iconic in her village and people have said she puts the government and other officials to shame

A little boy who was found abandoned by Lou is now cared for by her older children. The family have little money but still managed to save dozens of children

Lou made a living from collecting and recycling rubbish, she said that she would never leave the children after coming across them, abandoned

Infanticide of 'guilt children' is still a problem in rural areas but it is rare in cities, where children are usually abandoned but not killed.

The baby's fate has horrified China. The tot was spotted when a passerby went to throw some rubbish in the bin the and saw what he thought was a dead baby in the bag.

He told police that the child was purple and had not moved until he examined the bag more closely.

A resident who witnessed the girl being taken to hospital said: 'She was still breathing and had a heartbeat. Blood from the wound stained the whole body.'

Doctors said that if the baby had been left in the bag a few minutes longer she would have died of suffocation and it had already been affected by the lack of oxygen hence the purple colour.

They said that the baby had been born premature and was probably between 32 and 34 weeks old and weighing just 1.4 kg.

A medic said that if the cut had been just a millimetre deep in the baby would have died.

The premature baby was found in a bin, with placenta and umbilical cord still attached, in Anshan city in northeast China

PREVENTING MORE THAN 400 MILLION BIRTHS WITH CONTROVERSIAL RULE

The painted sign reads, 'It is forbidden to discriminate against, mistreat or abandon baby girls'

China's controversial 'policy of birth planning' was introduced in 1978 to reduce the strain on the country's burgeoning population and reduce the strain on resources.
It officially restricts married, urban couples to having one child and those who break the rules have to pay a fine or fee.
Those who stick to the rules are usually awarded a certificate and can benefit financially, such as receiving an additional month's salary every year until the child turns 14.
The policy allows exemptions in some cases - including rural couples, couples without siblings on either side, and ethnic minorities.
Residents of Hong Kong and Macau are exempt from the policy, as are foreign nationals living in China.
Certain rural parts of the country allow couples to have a second child if the first born is a girl but many parents feel pressured to produce an heir and end up abandoning the females.
If the second child is also a girl, no more children are allowed. It is extremely rare to find a family that has two sons.
The Chinese government claims that the policy has probably prevented more than 400 million births and in 2010 it was reported that for every 120 boys born there are 100 girls.
Critics inside China and around the world have condemned the policy and accused the government of enforcing abortions.
Despite the fact that it is illegal to kill newborn babies in the country, female infanticide and the failure to report female births is widely suspected, especially in rural areas.
An international conference on human rights, held ten years before the policy was introduced, proclaimed: 'Parents have a basic human right to determine freely and responsibly the number and the spacing of their children.'
Despite this, an independent 2008 survey reported that 76 per cent of the Chinese population supported the policy.

Read more: http://www.dailymail.co.uk/news/article-2181017/Lou-Xiaoying-Story-Chinese-woman-saved-30-abandoned-babies-dumped-street-trash.html#ixzz22drlJ0MY

Keppra-in the past for us

Keppra was stopped because of the side affects of hyperactivity and agression. It took 6 weeks to wean her off, but as of last Friday we are OFF!!!!  During the Keppra months because Madalyn cannot explain how she feels,  I tried to explain what was happening to her based on my observation of her behavior.  ... she wakes up very irritable. Once the first dose is given, she becomes a little happier within an hour or so. Then, towards the afternoon she becomes hyper and begins repeating the word Hi-Yah over and over as she rams her body onto couches, and into walls laughing hysterically. At this point, I had very little patience because I knew the next moments would start the meltdowns. Well.....as I was reading online the other night, I found this description by an adult on Keppra...someone that could verbalize how she felt on the medication.....

Excerpt from an adult on Keppra that appears to have had the same reaction Madalyn had:

I have been on an emotional rollercoaster though now with Keppra. Haha I have a bit of a pattern now. Wake up cranky. 6.30 tablet. 9.00 hungover feeling 11.00 hyper and laughing (which I don't feel in control of) 2.00 sleepy (though I am back at work now so I just have to push through) 3.00 cranky or upset (also seems like no control). Then this happens all again at night.

Yesterday at work someone was banging their desk. After about a minute I yelled. Argh who is doing that. Eveyone just looked at me. The have also noticed my crazy hyper ranting. Although I had to write a argument against a new process on Monday and my ranting came in handy (got to laugh or will cry).

So, I have no doubt that Keppra was not the medicine for Madalyn...and am so glad those months of meltdowns are now over! Hopefully she will continue to improve with the Depakote, and the appetite will normalize as she adjusts. But if not, we are onto Plan B and C next week.

Madalyn update

Madalyn's doctor tested her blood levels of depakote, along with the routine tests of white blood cells and liver function.  The medicine can cause serious problems with both, therefore it will be monitored while she is on it.

Her blood levels were not quite to the therapeutic level, so we increased her to 3 pills at night and two in the morning.  Each time she has increased Depakote, her appetite has also increased. 

So, I called Michelle, the neurologist's nurse and left this message:  This week, upon finally weaning completely off of Keppra, and being on Depakote, Madalyn's behavior is dramatically better.  Her attention is still not very good, and her reading is much lower than it was previously, but I'm thrilled to report that she is no longer having long meltdowns every afternoon. However, I'm still concerned because her night wetting has not stopped (as it had on the first seizure medicine).  I am also concerned about her increased appetite.  She is grabbing food, and always worried that she won't get enough to eat.

Michelle relayed the message to Dr. Parker, and called back with the following message.  Let's stay on the current dose for 7 days since we just weaned off Keppra and increased Depakote and see if the appetite subsides as she adjusts to the new dose and see if night wetting stops since we did increase Depakote.  Dr. Parker is also concerned about the night wetting, and if it is still happening in 7 more days, we can add a low dose of a second seizure medication that also happens to have the side effect of suppressing the appetite.  We don't like to use two medications if we can help it, but it may be needed, so we will just wait and see.  If we add the second medicine and that doesn't help with night wetting and appetite,  Dr. Parker may want  her to come in for another inpatient Video EEG to see if they can tell for sure if the night wetting is being caused by  seizures, subclinical seizures, spiking, or it was just a fluke that it returned when we came off Lamictal.  That would be quite a coincidence, so I don't think anyone thinks that is the case, but before we continue to medicate (with all the side effects), I think it's very prudent to look further.  I was thrilled with this message because it was the first time over the summer I was told about Plan B and C:)  And knowing that there is a plan B and C told me that Dr. Parker is taking my concerns seriously.



Additional Notes (to help me keep track)
Today for the first time she was able to concentrate on her swim strokes, and alternate both hands out of the water!  She was so proud:)  All summer her strokes have been very messy paddles....so this was huge!:)  Her smooth strokes with both hands was a beautiful sight!


We did have a couple of minor meltdowns related to reading and signing her name to a birthday card.  but, I'm hoping the new dose of Depakote is making her tired (Madalyn's symptoms of tired is hyper, figety, and tearful)...and this will subside.  None of this ruined our day, as she was able to recover from each incident quickly....A huge improvement!!!

Her appetite seems to be biggest in the morning and seems to subside to normal in the late afternoon.  Maybe we can use this somehow to time doses, or at least keep her busy during those hungry times. Or maybe the whole issue is subsiding, and will soon be a non-issue:)

Yeah Josephine!

At times Josephine's progress at camp seemed so slow. She started with very little awareness of and ability to move her right hand. But tonight, in the car, she surprised us by pushing a small ball into her right hand and picking up another in her left hand. It's amazing to think her little mind understood what her goals were at camp, and she is now at home working on them independently. I'm so proud of her!
   

 She did this just as we had just stopped by my mom's house. We were sitting in the car, and my mom was saying hi to the girls through the windows.  Instead of interacting, we noticed Josephine was intently looking at her hands.    Next we saw her use her left hand to pry open her right fingers, push a ball into the palm of right hand, then pick up a second ball with her left her hand.  And there she was....holding objects in both hands!  We cheered for her.
 

 Madalyn helps a lot by demonstrating motor skills for Josephine.  I don't know if she learned it from her own therapists, but I think it  just comes natural to her.  Madalyn will use her left hand (affected hand), and make a task look harder than it is for her (i.e. make it look like it did before she mastered the skill).  It's a novel idea and helps Josephine understand how to work her right (affected side). 

Here are more pictures the camp recently posted to Facebook for us:

I love that smile!!

Ball work:  strengthens core muscles and helps with balance.  She has improved tremendously in this area since coming home!

Bilateral work.  She's definitely trying to use both hands!!

I had to do a double check...that is right hand holding the cash register scanner!

What a great toy to strengthen the wrist!