Overview

Saturday 24 November 2012

Update



This has been a very busy week for Emma. She was so amazing through it all. We decided to pack up and head to Winnipeg a day earlier due to freezing rain and snow warnings.  It never fails to storm when we are supposed to go.  So glad we did, as it was horrible weather in Winnipeg the next day.  We were to go to Rehab Center for Children to get her stander fitted so I figured I would phone them a day earlier to see if they could fit us in.  Turns out, he had no idea we were coming in so the stander wasn't ready.  I guess telling me when he was here at clinic in Brandon to come in on the 23rd to have it fitted and he would have it ready for that date, plus penciling it in his book means nothing.   He figured I can drive into the city again next week for a fitting, thinking it should be nothing to load Emma up and drive another 3 hours there and another 3 hours back for a fitting??? I wish people would seriously think before they talk.  Now she has no equipment that she can use. Even her wheelchair has become very uncomfortable for her and her head is constantly tilting off it while driving or sitting in it.  I sent an email to her OT and PT Thursday letting them know that this is very unacceptable.

Thursday, we went to the Children's Hospital to pick up their oximeter for her sleep study and since she had a request from her Genetics doctor for blood work for Cytogenetic testing, I wanted to wait until we got to Winnipeg to get it done as in Brandon, it took them 45 minutes and 3 lab techs to get 1 ml of blood out of her.  We were in and out in Winnipeg clinic in 3 minutes with 2 full vials, no joke! I am very happy I waited it out.

Emma's sleep study went fairly well.  What I thought may be possible Apnea spells was just her obstructing. Very happy to hear that.  She is moving so much more and now flips herself onto her back when sleeping and with her head tilted back, is causing obstruction.  It is just a matter of repositioning her.  She has the oximeter to alarm me during the night when she does this, so it is very comforting.  They also feel that she is doing very well with her breathing.  Even though she has required oxygen more, they aren't worried because it doesn't take her long to get off of it.  They feel the inhalations with Saline that I am doing are helping her tremendously and they said other inhalations would work for when she is sick only.  The reasoning behind this is because with the Saline, she can clear her lungs out where she is between 96-97%.  So if she ends up getting a Respiratory infection, they would prescribe inhalation treatments.

Then we were off to Neurology.  Her neurologist is absolutely wonderful, not a bad thing to say about him at all.  He was so happy to see Emma and he could not believe how well she looked and how good she was doing.  He was talking to her and she would respond with her "yell" and he was absolutely shocked.  He was very happy with her seizure control and especially the way she was responding to him.  We did discuss a lot, in regards to different treatments and Boston study and is always interested in what I have discovered in our OS group.  He thinks the group is an amazing thing for us to have!

After Neurology, I went out into the lobby where Gord, Jessica and Breanna were.  Gord is showing me this book that he bought in the Gift Shop there.  I said "OK?".  He tells me to look at the author so I do and I said "And?".  Well he said I bought the book because he signed it and I just laughed.  I said "Whatever!".  He said "No, he just signed it in the gift shop.".  I said "He was in the gift shop??".  Well apparently, Gord went into the gift shop and there was a man in there talking about these books to the lady that worked there. Gord told him he would buy a book if he signed it.  So, he signed it and Gord bought it.  Gord (who loves to strike up a conversation with anyone!!! LOL) started talking to him about Emma.  He then gave Gord a card and asked him to give me this card.  He said he is always looking for stories to write about (He writes Children's books) and he would love for me to call him when we got back to Brandon.  He wants to set something up, to meet or whatever to write a book about Emma!! Well Gord tells me all this and I just sat down in the lobby and I don't think I said anything forever, I was so shocked!!!  I finally text my mom right away and was telling her the story, still in shock!! I will call him and see what he has to say, could be very interesting!! Leave it up to Gord to start talking to this author! Maybe he was just in the right place at the right time??

So after all this, I am trying to put my brain into EEG mode.  Normally, they don't allow anyone in the room, but made an exception for me.  She thought I was maybe uncomfortable leaving Emma in the room with them, and I explained, "No, I am just very nosy and want to see the EEG."  She was surprised and asked what I knew about EEG's and Emma's last one, so I explained everything I knew and she was amazed.  I am by no means any expert, but have been watching EEG's the last couple of weeks so I knew what to look for.   Her EEG was absolutely amazing when comparing it to her last one.  NO burst suppression, ZERO.  Her neuro came in during it and was very surprised, her said never in a million years would I have put this EEG to Emma's name.  They were explaining things to me as we went along.  We saw two Eliptic Spasms (This is what they called them) the whole EEG and he said before they were right across the page, along with Burst Suppression.  I don't know for sure if he is saying "multi-focal" and I won't know until I get the report next week.  I do know that she is still having slow spikes.  I really don't know what any of this means, I just know her EEG has improved so dramatically from her last one and that her Lamictal/Keppra combo is doing absolute wonders for her.

After all these appointments, it is so nice to be home once again.  Emma continues to inspire me and make me prouder every single day.  Just when I think she has made me the proudest mom ever, she does more to surprise me.  She deserves a medal for what she goes through daily, and through it all, rarely complains.  She is also showing her personality more and more and brings me to tears when I think about how far she has come.  <3 Love you Emma <3

Wednesday 17 October 2012

What is fall going to bring?

Again, it has been to long since I have updated Emma's blog and I apologize.

Emma has been doing not to bad since the last update. She has been on antibiotics again for throat and sinus infection, but not chest!! I think that is always good news.  She still continues to be on oxygen more than not, but will have a few good days she can go completely without.  She continues to receive suctioning, chest physio and inhalations daily.

Right now, Emma's biggest challenge is her night.  She is now having sleep apnea spells where she will quit breathing and wake up gasping for air.  The pause lasts only about 10 seconds at most, but that is too much for me.  It can be resolved with positioning of her head.  She used to stay exactly how I positioned her, but now she kicks herself into all kinds of weird positions throughout the night.  So, needless to say, I am getting up with her quite a bit during the night to re-position her.  I have gotten a hold of her Respiratory team in Winnipeg and since they had her discharged a while back, we have to go through the referral process again. I am hoping to get a sleep study done on her when we are in Winnipeg at the end of November to see if they can catch one of her spells.

Emma will be getting a new EEG done also at the end of November.  I am excited and nervous at the same time.  It has been 3 years since she has had one done and I am excited to see the difference.  She hardly has seizures anymore, usually just when sick, so I am hoping the EEG shows a change for the positive.  I just hope she isn't having seizures that are not visible.

As for Ophthalmology, I am having a battle right now.  She is long overdue for an appointment.  I refuse to take her to her regular Ophthalmologist, mainly because of his lack of bedside manners.  at her last C.N.I.B. appointment, her OT told me about another partner he has, so we have been referred to him.  I spoke with his secretary yesterday and she told me waiting period for an appointment is now 18-24 months.  What???  Considering that was what Emma's lifespan was supposed to be, I find this so unacceptable.  So, hopefully, they can make an exception.  Her vision has improved greatly over the last few years, and I find since she has been off Vigabitrin, it opened a whole new world for her.

All in all, she has had no seizure med changes for over a year now, and she continues to improve daily.  Her PT and OT are looking into getting her a walker to see how she does in it.  This also excites me.  Right now, Emma is limited to her Peanut Roll for equipment.  She has outgrown her stander, her wheelchair isn't fitting right, and we took her Chill-out chair back to the school.  We have to wait until the end of October to get her stander refitted and who knows when they will get her wheelchair fitting properly.  Everyday is a new battle, but I would not trade it for anything in the world.

Thanks for reading!

Monday 6 August 2012

It's been awhile.....

I am the worst when it comes to updating.  These last couple of months have been such a roller coaster for Emma, i don't even know where to start.

She has been fevering, seizure clusters, requiring oxygen and lots of suctioning.  In two days, she seems to be fine.  The first round, she was put on azithromycine and she improved. Once the meds finished, she started all over again a week later.

The second round, she was put on Amoxi-Clavo and within two days improved.  A week after the med was finished, she started again.  The third time, she was hospitalized for IV antibiotics.  She has avoided the hospital here for three years and it was so hard to see her back in there.  She was admitted on a Sunday and was given Tazocin until the Thursday. She was discharged on Thursday, even after me arguing with her doctor that she wasn't well enough yet. 

Once she was home, we had a rough couple of days and then she seemed fine again. Thursday evening, she started fevering again, along with seizure clusters and all the O2 in the world wouldn't have made a difference in the way she was breathing.  She slept all day Saturday and woke up Sunday "fine".  Right now I am so confused as to what it is that is going on with her.

I have tried numerous things, eliminating this, adding that, just to see if anything makes a difference.  She has now been off oxygen for two days and again, seems "fine".

On a brighter note, we finally have a fence, which means we have the pool set up so Emma can go outside now and swim!! I have been waiting not-so-patiently for her to be well enough before I take her in.  I think today will be the day, even if I have to pay for it later. She deserves to be happy <3

I hope your summer is going well...all the best to you all, from our family!

Wednesday 20 June 2012

Emma with her big brother Jayden!

Good days and bad days

Emma has been sick again. This time was really strange. Started Thursday night with seizure clusters and every second night after that only. She was doing well Friday and Saturday. We went swimming on Saturday as Emma loves swimming! She seemed to be getting tired after about fifteen minutes. I got her out of the pool and within seconds she started the seizure clusters again. Her Ativan kicked in and she was fine. Monday night she spiked a fever within half an hour. She was up to 39.7. I worked on her for two hours suctioning, cold cloths, ice packs. She also had Tylenol & Advil, plus Ativan again to stop the seizure clusters. She has never spiked a fever that quickly!

We went to the doctor here yesterday and he agreed with me, thinking it's more of a sinus infection than chest. It was so hard for me to hear her chest as she was breathing so loudly and it was the same for the doctor as well. She is on Zpack, which is the only thing she doesn't seem to be immune to.

She had a great night last night and is back to her usual self, yelling at mommy! We are hoping for some nice weather this weekend as it has been raining everyday (or so it seems).  This time next weekend, her siblings will all be out of school and it will be chaos for two months! (LOL)

Hope veryone has a safe, healthy and happy summer! Go out and make some awesome memories!!

Thursday 31 May 2012

For those of you who haven't known Emma since birth, I have posted a video I made for Emma's 5th birthday! For a girl who "wasn't" supposed to make it to her third birthday, this video shows how strong my little girl has become!  This is the link, I hope it works on here:  http://youtu.be/knnVUkRxDlU

Thursday 17 May 2012

Long week......

Waiting patiently at the doctors. 

Emma has had a rough week again.  First of all, we went to the Children's Hospital in Winnipeg on Friday May 11, 2012 for her neurology appointment.  He was very happy with how far she has come in the last year.  He didn't adjust any seizure medication this time, which is a first!  I am however, weaning her Diazapam. I think it has lost its effect on her so he gave me the go ahead to do that.  She will have another EEG done in six months time when we go back as the last one was two years ago, and I know she has changed alot since then. I am hoping her new EEG shows great improvement.

Sunday comes along and Emma isn't herself. Takes a few hours to figure out what is going on with her. She was so sleepy and by mid afternoon starting clustering.  No fever. She had two Ativan Sunday (afternoon and night) and again in the morning. Then the fever comes and full blown pneumonia. Lots and lots of suctioning, oxygen, chest physio, etc, etc.

She went to the doctor Tuesday and I was so scared he would want to admit her. He told me no need for admittance since she has everything she needs at home...huge sigh of relief! She is on the Z pack, she responds so well to it. She has still been on oxygen throughout the night, although last night was only a couple of hours. Everything seems to be loosening up and coming out now.

However posting on facebook about her caused a bit of emotion.  My son who is 12, was at his dad's house and read my status. He was so scared and thought Emma was going to pass away too. After reasurrance he was ok, and I felt horrible.  Then the response I get from him "Mom, she is like my ONLY sister, the other two just annoy me!" and he makes me smile. What a kid!

One other thing I wanted to add:  I recieved an email this morning in response to a thread I posted in a long time ago.  Just to show you where I was at 2 1/2 years ago. It blew me away! This was my post:
My daughter has Ohtahara syndrome. She is now 2 1/2. Unfortunately, the way I feel at this point is that there is little or no one doing research on this as it is too rare. I wish she had cancer, which is an awful thing to say, but at least there are millions of people and millions of dollars going into research for it. There is a chance of treatment. I need to spread the word on terminal epilepsy illnesses, but have no idea how~

All I can say is "WOW!"

She is being enrolled in a clinical study through Children's Hospital in Boston. I do hope they find out the reason "WHY?" Emma has Ohtahara Syndrome, but I know it will not change anything in terms of prognosis or treatment. I am just thankful someone is finally doing a clinical study on this and I hope it can help families in the near future.

Here is to a happy May long weekend everyone, stay safe and have fun!

Friday 4 May 2012

Well this week has not been a good one for Emma.  Started off arguing with the pharmacy in regards to her Glycopyrolate prescription. Of course they didn't send a req. to the doctor like I asked them to last month, of course I am always the one to blame there. So after three days of them apprently being able to find their fax machine, the req. gets sent in. So now starts the arguing with Children's. It didn't turn out nice...and after 3 days of her having no med, her problems start. Excessive suctioning, positioning, drooling, aspirating and oxygen. She started back on the med last night and as of this morning, she is doing really well again. The oxygen is off and she is holding her own very well.

I really don't understand health care, probably never will. Every "mission statement" I have seen says they will ensure the patient recieves the care they need in a timely manner. So I ask....why do this to a child? I was up with her 24/7 so she wasn't choking and gagging, I was suctioning, I was positioning, I was doing chest physio....while they were doing what? Not a care in the world, so sad.  I know I am not alone...this very week another mother is going through a struggle with the health system, trying to get something for their child that will not only benefit her, but possibly save her life.  I have never in my life been so sickened at doctors/sectretaries/nurses than I have this very week.  Put yourself in our child's shoes....or my shoes....see how the stress you cause affects us as parents and our children. Then go look over your "mission statement" again.

I feel a bit better now having said that, but still so dissapointed. Thanks for reading my rant....I promise the next one will be better :)

Wednesday 25 April 2012

New!

I am new to this so please bear with me!! I have deleted Emma's facebook page and will now be using this blog to send updates to everyone.