Well folks…it’s been nearly 3 years since Emily had a relapse. When she relapsed, in 2009, we were trying to stretch her treatments from every 3 weeks to every 4. Now she’s getting IVIG every 5 weeks. It still amazes me that she’s made it this far…but at the same time I can’t be surprised. I have an amazing daughter!

It took an insane amount of IVIG to get Emily to even be stable. And, I am SO VERY HAPPY TO SAY, it’s not really taking much IVIG to sustain her at this point. She’s currently around 93 lbs & gets 20 grams of IVIG.

Recently she decided she wants to go to University of Michigan (GO BLUE!) to study Geological Sciences…she wants to be a geologist when she grows up. Girlfriend LOVES rocks! And math! And science! (How is this child biologically mine? LOL)

I’m amazed, at 10 years old, she knows what she wants to be when she grows up.

As I’ve posted about before Emily is a member of the Junior Skating Club at our local roller skating rink. Her favorite skating activity is doing “figures”. They are the black circles located around the skating floor. Basically the skater has to go around the circle (on 1 foot) using balance, strength & coordination to keep the line between the wheels of their skates perfectly. Emily is excelling on figures! She also hopes to compete at the national level for figures and free style (think fun skating program) one day.

She is also trying out for a junior precision team (think synchronized skating) on Friday. Her coach seems to think she make the team with no problems.

It does take her a little longer than the other kids to master jumps. We think she is afraid of falling & can’t get over the mental block of that.

Emily skates 2-3 days a week along with going to school, Girl Scouts & church, while maintaining all A’s on her report cards. She is also keeping her fingers crossed to be selected, by her teacher, to join the National Elementary Honors Society.

Her energy is great & her spirits are high. She recently told me she does not believe she has CIDP any more. She doesn’t feel it in her body at all.

She does still complain of pain in her legs & hips when there is a season change. Weather patterns seem to irritate her nerve endings. When she has the pain she still has the strength to continue on with her activities. We are very thankful for that.

Emily has been without a port since April 29, 2011 & has done VERY well with getting IV’s. She still doesn’t like her port site to be touched. She said it still feels weird…I wonder if it always will. She did tell me it’s nice to be able to move her arm & to not feel any tugging from the port.

To all the moms with CIDP kids – It can get better! It will get better! You just gotta have faith! My favorite quote (also Jessica H’s favorite) is “With hope anything is possible” by Christopher Reeves. I figure if hope worked for Superman it has to work for us…right?

Happy Fall!

Kelly

Emily is doing really well. We are moving her treatments to every 3 weeks again. She seems to be tolerating it, which is a HUGE relief. I’m still not thrilled with our home care company or the new nurse. I keep going back & forth on whether or not we should switch.

Emily is going into 3rd grade this year. At the end of 2nd grade she was reading at a late 5th grade level & spelling 6th grade words. She’ll be 8 on Sept 9th. It seems like she was born just yesterday though.

She finished a 3 day Girl Scout camp this week. They were supposed to stay overnight on Wednesday but she didn’t make it & called home at 11pm. That’s ok because my husband & I were missing her like crazy. She had a stomach ache & was cold & wet. She was really disappointed in herself for not making it but wants to go back & try again next year along with going away to Girl Scout horse camp for a week. I just don’t know if I can go that long without her!

I’m babysitting a friend of hers for the summer so she always has someone to play with. I’m glad because normally she gets bored in the summer. There aren’t any kids near us for her to play with.

On a much sadder note, my grandma passed away yesterday. She was more than just a grandma to me, she was a best friend & more like a mother to me. My grandma & I were so very much alike. Her passing has left a huge hole in my heart that I fear will never fully close.

She was in & out of the hospital since late May after she fell & broke both bones in her ankle. On Tuesday, she had a heart attack (with the nurses in the room with her), the hospital worked on her for 38 minutes then she was put on life support, about an hour later she coded again for 8 minutes & then they resumed with the life support all because she didn’t have a DNR order & my aunt (who had Power of Attorney) just couldn’t let her go. Wednesday evening they took her off of the life support & she died yesterday afternoon after her kidneys failed.

After going through what we went through this week with my grandma I would urge others to get their paperwork in order, their wishes written down & to put someone in charge who can handle it. My grandma was only hours away from having her DNR meeting where she was going to sign the paperwork to not resuscitate her. Because she didn’t make that meeting she suffered for 2 1/2 days.

I know she’s in a better place so that is very comforting to me.

I hope everyone is having a great summer full of fun, laughter & lots of love!
Kelly

Emily saw her neurologist on Tuesday. He was impressed with her improvement since her “setback”. She’s back to normal!

We are going to do 1 more once a week IVIG then move her to every 2 weeks for 3 treatments. The plan is then to move her to every 3 weeks again.

I told the dr that she will be on every 3 week treatments for A LONG time! He was fine with that. I think he knows that I won’t stand being pushed into moving her treatments further apart any time soon.

In other Emily news, I had a parent/teacher conference with her teacher. Emily is 7 years old & in 2nd grade. She’s testing at the 4th grade level for both reading & spelling. She’s doing excellent in Math, Social Studies & Science! Her teacher says she’s a very fast learner & kind to others.

Last week I took Emily to opening night of the circus. A VERY dear friend sent an early Christmas present to Emily in the form of cash for the circus. Emily had a BLAST! She is still talking about it so I know she had a great time.

So that’s it. Good news all around!

Kelly

I forgot to add more pics from Halloween.

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Emily finished up her loading dose on Friday just in time to get dressed & go Trick or Treating with her friend Nate. You would have never known she had started to go downhill if you saw her last night. She was running from house to house & jumping around like crazy. Her feet did start to hurt after about 45 minutes but last year she didn’t even make it 30 minutes before she complained of her feet hurting.

Emily has a TON of candy. She’s never gotten so much candy on Halloween before. She got many compliments on her costume. Some people thought she was an angel or a butterfly but she would kindly inform them she was a fairy then take their candy & run to the next house, LOL.

We did go to one “scary house”. A guy came out dressed as Michael Meyers (from the Halloween movies). It freaked ME out! He walked just like Michael Meyers & everything. It was CREEPY! Emily’s friend refused to get close but Emily just stood there looking at the guy like he didn’t scare her at all. I’m sure after she sees those movies (when she is MUCH older) she will have a different take on the situation.

She seemed to tolerate the 30 grams for each infusion well. She ended up with 110 grams of IVIG over 4 days. I’m hydrating her like crazy & still medicating her today with Motrin every 6 hours & tonight I’ll give her a Benadryl – just as a precaution. She’s complained of a slight headache a few times today but ice cream & popsicles seems to make her feel MUCH better.

Her nurse is coming back on Tuesday before we go to vote to give her a 20 gram infusion. That’ll be the last time we see her nurse until December. She’s going to Mexico & we’ll have a replacement nurse. She came over the other day to meet Emily. She seemed nice so I’m hoping all goes well. I HATE having a new nurse. It makes me worry too much.

Oh and…

Her eye looks NORMAL & there is no more pain! I had her follow my finger with her eyes this morning & she said “That IVIG sure does work well. It doesn’t even hurt anymore!”.

Kelly

Emily had her 4 month check up with the eye dr today. He said that her eye looks excellent & that it’s about 99.5%. He said that that it’s not 100% because she has just a teeny tiny bit more that it could go over but he said that since it’s painful to put your eye over all the way & hold it there, he doesn’t see it as a problem…neither do I. I’ll take 99.5% ANY DAY over what it was when all of this first started. He did say that her vision is just slightly better in the right eye than in left, which I found weird because all if the problems are with her right eye. It’s good to know that she hasn’t had any vision loss.

He did say that he’s seen 1 other child in his whole career that had CIDP with the eye issues. He said that child recovered well but it did take surgery & time.

February will be 1 year since Emily’s last relapse (KNOCKING ON WOOD!) and the eye dr originally told us that he wanted her to go without relapse for 1 year & then he would consider surgery. He doesn’t feel that she needs the surgery now! She’s recovering well on her own (with IVIG, of course!) and he feels that surgery is not necessary at this time! WHOO-HOO!

Other than that…

Emily is still on IVIG every 2 weeks & doing well. We saw her neuro a few weeks ago & he was very pleased again with her progress. She looks & acts like any other 6 year old. It’s so good to see her being able to be “normal”.

I hope everyone else is doing well.
Kelly

We are seeing a new neurologist as I am completely fed up with the other one. I took Emily in to see him & he told me that I should just accept that her eye is not going to be perfect, let it relapse & be happy that her legs are working. (Yeah, he really did say that)

We’ve had 2 appointments with the new neurologist & I like her alot so far. On Tuesday Emi had another EMG. She was fine for the 1st part but we had to stop when we got to the point where they used the needle. Emily just could not calm down enough for the dr to get a good reading. She tried so hard though.

The dr said that she wanted to discuss Emi’s case with the other dr’s at the clinic & get back with me. She called tonight & said that the EMG shows improvement in the amplitudes but there is still slight demyelination. There is proximal involvment in her arms. That was explained to me that the damage is more towards her upper arms than near her fingers.

The MRI done in December shows inflammation in the 7th cranial nerve, which controls facial expression. They are perplexed because Emily has right eye paralysis but the 6th cranial nerve showed no inflammation. (that’s the nerve that controls the eye muscles) Also the spinal MRI shows inflammation along the spinal cord that they want to investigate further. It could go along with CIDP but they are still concerned about it.

We have to go back in a few weeks & they want to redo the brain & spinal MRI, a spinal tap & finish up the EMG while Emily is sedated. She will not be put under general anethesia – only twilight. I’m told that she will be aware of her surroundings but won’t be able to feel anything & she won’t care what is going on. I will be with her throughout all of the tests because they have an open MRI machine. It’s done right at the dr’s clinic & not at the hospital.

The dr told me that we are looking at 3 different outcomes.

1) Emily has atypical CIDP. Which means that she doesn’t present like a normal CIDP’er.

2) Emily has atypical CIDP along with something else that is causing the eye problems.

3) Emily does not have CIDP at all & it’s something genetic.

My husband & I are both going to have genetic testing done on us. We will be referred to an immunologist to do that. We may also be asked to have EMG’s done as well.

Now this is the wierd part, I’ve been having leg pains & numbness over the last month or so. I’m not making a big deal about it because I’m thinking that I’ve researched CIDP so much that my mind is playing tricks on me or that I’m having sympathy pains or something. But I’m also worried that the mold in our apartment really is the culprit. I’ve never had problems like this before EVER so I don’t think it’s something genetic from me. My husband says that no one in his family has ever had problems either, that he knows of.

I am also upset because it seems like things were not done right from the beginning. There are blood tests that should’ve been done but weren’t & we should have been sent to an immunologist when all of this first started.

We are to keep Emily on her IVIG schedule of 2 IVIG’s a week for 4 weeks then 3 IVIG’s for 2 weeks until further notice. The dr suggested trying plasmapheresis but I told her that is a last line of treatment for me. I think we need to explore the less invasive treatments first.

I’m sorry that I haven’t been around much lately. Life is just very crazy for us at the moment.

I hope everyone is doing well.

Kelly