Cast off-Bilateral days

As expected, Josephine gained a lot of awareness and strength, but did not gain the ability to open her hand.  We will continue to work on this at home, and hope to repeat the 4 week program again next year!

Over the last 4 weeks, she worked hard, and didn't seem to mind the cast at all.  In fact, each time we took it off for a change, she was eager to put it back on.  She even said "thank you, Reggi", as Reggi slipped it back on.  Today, Reggi had to hide it because Josephine wanted to put it back on.  Pretty funny!  But, once she got used to it being off, she enjoyed being independent again.  She ate supper, played with toys, all without me having to hold the items in her little fist......

Today as soon as the cast came off, Josephine began opening and closing her  left (unaffected) hand and saying "open close open close".   It was as if she was showing Reggi she CAN do this....and she knows what Reggi wants......with her left hand......and she wants to do it with her right hand, as we keep requesting of her.....but she just doesn't have the pathways from her brain to that hand...yet....

The best way to help her develop those pathways is to place her in weight-bearing positions to increase strength, as well as continue to get her to reach and push/pull with her arm as much as possible.  Hopefully, hand function will follow.

But, as I always say....regardless of her progress, she will be able to do everything she wants in life.....one handed, or two.....this therapy is just to give her the opportunity to gain as much function as possible.

I'll update more after the final testing, which is Friday.

Josephine's therapy

Right arm is definitely stronger. Casting her only working hand has been tough on her. But she has worked diligently with Reggie (her therapist), and even started using words more and more to let us know her needs and frustrations. 

And I'm so thankful to Reggie  for her never-ending patience and understanding for both my girls!  She has made sure Madalyn has felt needed and a part of Josephine's therapy, which is great for both Josephine and Madalyn. 

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Answers from Cleveland

Well, several weeks ago I wrote the post about what we learned in Cleveland, but it never went through.  So, the short version is that she never had a seizure while in Cleveland.  The final opinion was that if her seizures come back and don't respond to medicine, she is a surgery candidate.  However, her spiking is in a large portion of her right hemisphere, so the surgery would not be as small as I'd like.

But for now, they agree with our doctor in Jackson that medication management is an on-going process and that you have to weigh the side affects with the benefits and just keep trying.

When we first left Cleveland, we had several really tough days (behavior/cognitive/attention).  After  a few days I realized it was because she had abruptly begun her seizure medication back and had to adjust to it again.  That tells me her medicine is helping her functioning, but that starting it back abruptly makes everything worse.

The best part of Cleveland Clinic was hearing the best pediatric epileptologists agree with our Dr. Parker.  Also, every person I met told me how wonderful Dr. Brad Ingram is.  Dr. Parker had told us all about him before we got there.  He studied at UMC and just completed his fellowship in pediatric epileptology at Cleveland Clinic.  He studied under Dr. Parker at UMC. There are less than 60 pediatric epileptologists in the US, and we are so lucky to be getting a great one. It will be the first time UMC has had a pediatric Epileptologist.

Dr. Ingram visited us at Cleveland Clinic and chatted for over an hour.  He is the most personable and kind man I have met!   He said the reason he is returning to Jackson to work is because of Dr. Parker!  He will be the one we see in Jackson whenever we are in for video EEGs.  He and Dr. Parker will be working closely together.  He already knew we were because he and Dr. Parker had consulted about Madalyn in the past.

In addition to chatting about random things, he shared that he has epilepsy.  He also shared some stories about Doctors that didn't help him in the past with his epilepsy.  He also said he got the 'lamictal rash" just like Madalyn did, and being an adult, postponed getting off the drug (very dangerous, and he admitted not a smart decision at all) just because it gave him the best seizure control with zero side affects.  SO, when I complain about missing the days Madalyn could take Lamictal, he totally gets it!  So, great :)

So, a great trip, all in all!  I don't think we will need to return, unless seizures get out of control and require surgery.   I honestly don't think that will happen, but Cleveland Clinic is  there if we need it.

Bedtime and no news yet

Sent from my iPhoneThe team conference is tomorrow. She hasn't had a seizure yet. Tomorrow should provide the plan and maybe the going forward recommendations.

Waiting for answers, learning a bit each day

Dr. Gupta was very nice. He said her EEGs are very complicated. He is seeing spiking. He has not seen a seizure. He thinks she could be a surgery candidate if her medicine quits working again and therefore we will stay as long as feasible to capture a seizure so that if it comes to that later, we will have that information.

He thinks the previous 4 hour episodes were seizures, not medicine effects because they are consistent with her type of seizures and because they were "episodes" with a start and end time. This is a different opinion than the other doctor here so this proves it must be a difficult call since we also had varying opinions in Jackson.

Madalyn's Jackson neurologist thought they were seizures as did one other neurologist in the ER. One other doctor in Jackson we saw while she was inpatient during an episode felt it may be medication induced. I go back and forth on it. I hate not knowing!

Today Dr. Gupta explained the results from her MRI. It's the same news as 7 years ago, but very helpful to hear it again, and he used a model of the brain and her scans to explain it to me. The summary is that more than 50 percent of her right hemisphere was damaged, but more significantly is that the area of damage are the primary pathways of the hemisphere, so it is is in an area that is more significant. It affected all the lobes of that hemisphere.

The injury isn't very significant except to point to the origins of her seizures. Most of her functioning has been transferred to the non-damaged hemisphere.

So, for now she will stay in the monitoring unit to see what happens since she is off her medicine.

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Moving hotels

Ronald McDonald house just called and they have a spot for us! Yeah! Our current hotel is expensive and not-so-great! But all  else is good here. 

She had an MRI and PET scan, so thar was two stressful days of no eating and anesthesia...

As of last night we stopped her seizure meds to wait for a seizure. Last night the monitors pressed her seizure alarm button and many nurses came in our room to check on her. I'll find out this morning what they saw and if it was significant.  Now that they have collected a few days of  data, today's doctor visit should give much more insight.

A volunteer is now coloring with Madalyn, which she loves! The volunteers here are amazing! They have given her a soft  hand made blanket and a pillow case. They bring lots of treats every day. It really helps Madalyn keep her mind off all the procedures and long days of staying in bed.

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