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!

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!

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!!

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

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!

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 :)