Sorry it's been SO long!!

Hello all!!  I'm SO sorry it has been SO long since I have posted last.  I am going to try to do some catching up.  Here are some random pictures that I have taken between the last post and now.  I hope you enjoy :)

Emmalin sitting in the big girl chair at the dentist - April 2014 :)

Helping mom plant some flowers back in May 2013

Emmalin back in December 2013

Emmalin and Grandma Ruth back in May 2014

Another Mom's Facebook Post

Today I found this on Facebook.  Another mom who has a child (older than Emmalin) posted this on her daughter's page.  Although not every single bit of it is exactly like our journey with Emmalin having CDKL5, I felt that this mom did an amazing job at explaining some of thing same worries and fears that our family has (although as I said a lot of ways our journeys are completely different).

"Last night i woke to turn Abby sides and had a hard time going back to sleep. One of the rare nights that exhaustion doesn't take over and I sleep like a dead man. Instead a million thoughts run through my head. Laying next to Abby, snuggling her, the flood gate of tears open. I normally would call Joe and talk but he was asleep although he doesn't care for me to wake him, I didn't. I thought of the long hard battles my Abby has fought. How hard this all has been on us all. Even while your child is in the hospital fighting for their life, the world still turns, life must go on. It's so unfair. You shouldn't have to worry about anything but your child. I have sat in the ICU paying bills watching the monitors. Joe still has to go climb back into his truck and drive away to pay the bills. What a horrible feeling that must be for him. I think about it a lot. I feel selfish for always being here for her while he's working hard and doesn't have time to stop and have the time he would like. I hope one day to do something so great for him as he has for me. I can not imagine leaving Abby's side. I look at my other kids and see sadness in their eyes. Even though we have lots of joy and we are happy, there is a great sadness too. I remember Josh turning his back and hiding his face when Abby had a seizure. Now it's a normal thing. We go back to eating, talking, watching tv... Like it didn't happen. I wake at night and shake her to make sure she's still breathing. I feel judged by others about the medications we have gave Abby. I too started out thinking, I will not give her more than 1 seizure med at a time. I will not do a feeding tube. You WILL in the end do whatever it takes. I've made bad decisions on certain seizure therapies that I wish I hadn't, that could have killed her, there are things I wish I had done sooner that maybe would have stopped her regression. I made a great decision for her to have the spinal fusion. It has been life changing for her. God knew We really needed that. I am so unsure sometimes and indecisive. It's hard to make decisions for another little life when that person can not tell you what's wrong or what they want. It is so emotionally draining and nerve wracking. I have prayed and cried for endless hours and begged God to take the seizures away or at the very least lessen them. Then to have someone tell me they prayed her seizures away while babysitting is like a knife to the heart. There are always those people that don't have kids but are experts... I always wonder if I am doing all that can be done, if I made the right decisions, I don't need anyone's help to make me feel more inadequate. I do my best. I by no means am perfect but I know one thing I do right is give my all for Abby. Joe and I sacrifice everything for her to have the best care. I don't want or need praise for that. I feel that's what any mother should do. I am not special. I get angry. I have my moments I just want a normal life to go on vacation or a night out with out seizures. Joe and I will be celebrating our twentieth anniversary together with Abby and no doubt seizures. We never have us alone time. It is hard but I will never resent that. We will never say man I wish I had not spent so much time with Abby and had more time together. I trust in God no doubt but I worried last night, what will it be like for her if I am not here for her. Will she be cared for properly. Will she hurt and someone not recognize her needs. I know Abby, all her facial expressions. Bad things still happen to good people. Children die every day. Everything in the End will be okay but there may be lots of suffering before the end. Me or my child are no more special to God than another mother and child. I have so many worries but I don't usually share them. I am not a touchy feely kinda person and I don't like to cry in front of people so sometimes I think people see Abby looking good, well cared for, and think it's easy. What they missed was the half hour melt down trying to get her dressed and hair fixed for school...I break down and cry it can be overwhelming. I remember crying to Abby begging her to help me and to fight when she lost everything, she was so weak and couldn't fight. Bathing became a struggle, she could no longer sit up, I just knew she was dying. It was a horrible time. I feel as though I lost her once and I mourn the girl she used to be and one day I may go through it again. I do not want to. Then I think about her being here with out me and I do not want that either. For me as a Christian I pray for the return of Jesus and an easy out but I don't think that is going to happen in my life so always in the back of my mind I know what's in my future and I try to ignore the facts. How else am I to be happy, just live in the moment. Continue to praise God through the good times and the bad. I can praise him in the bad too, because of Jesus I know I will live eternally with my baby ."

4th Annual Journey of Hope Benefit

This Friday (October 18th) will be our 4th Annual Journey of Hope Benefit.  As always we have had SO many people help in so many ways to make this possible.  The people at 320's Club (our venue) have been amazing and so has our band that will be performing, Machine Gun Symphony.  We would just like to say THANK YOU TO EVERY SINGLE PERSON THAT IS HELPING IN ANY WAY!!   We can't put into words how grateful we are for everyone being so generous with their time and donations!!  Thank you from the bottom of our hearts!!  Here is the flyer in case you will be able to make it on Friday to the benefit.  Thank you in advance for every single person that has helped make this benefit a success!

We hope to see you on Friday!

                                                                 God is Good!

Back Up and Running

Sorry it has been SO long since I last posted.  As always, it has been busy on so many different levels!  Here is kind of a "run down" on how things have been going for Emmalin so I can catch everyone up :)
 Since my last post in March, I am happy to report that things have been a little calmer for us (at least I think they have).

~Emmalin made it through the summer with minor ear aches and colds (which is fantastic).  The only thing that isn't that great is at some point during all of this Emmalin started consistently having distressed breathing with every single cold now :(  We just watch her pulse ox and make sure it stays at an appropriate level.

~On July 4th, Emmalin got to do sparklers for the first time.  Honestly, I don't know why I didn't think about them before, but Emmalin seemed to really like to look at them and so we will be doing sparklers from now on :)

~Some point in the middle of August Emmalin was diagnosed with pneumonia again.  To be honest the doctor said he wasn't completely sure if the sounds were all coming from upper respiratory or if it was in her lungs and so she was treated for pneumonia (and an ear infection).  Emmalin ended up getting sick again with a different round of viral stuff about 9 days later and so this was the cold that I felt was NEVER GOING TO END (but of course it did finally).

Our Sleeping Beauty

~September 11th, Emmalin had another cold (with distressed breathing) and her pulse ox dropped again (the only other time this has happened was back in March).  She was admitted back in the hospital (this time at Cox South) because she needed oxygen.  Emmalin ended up being in the hospital for 5 days this time.

Em the day she was admitted :(

~September 12th, while we were in the hospital, Emmalin had a huge coughing spell and ended up aspirating for the first time ever :(  So from this moment in the hospital Emmalin was then treated for aspirating pneumonia (it went in her lower right lung).  This was a huge blow because they say in the CDKL5 world that once they aspirate, it makes it easier for it to happen again (big sigh).  Emmalin is doing better now, but it took her body about 2 weeks to recover after being released from the hospital.  Honestly, there are still some small ways that her body is still weak, but all in all Emmalin is back to her "norm".


~When Emmalin was released from the hospital, we then got oxygen for the house.  No, Emmalin did NOT go home on oxygen!  But with winter coming on they (Emmalin's pediatrician) just thought it would be a good idea for us to have some at the house in case Emmalin's pulse ox drops quickly again (like last time).  As much as we hope not to have to use it, if Emmalin does get in situation where she is sick and her pulse ox drops again, by having oxygen at the house our hope would be that we could keep Emmalin at home instead of having to take her to the hospital.  Emmalin gets sick SO easily and

Our New Portable O2 for the House

quickly!  We just figured that (as I said before) with the winter coming on (and the fact that Emmalin had some type of pneumonia TWICE within about a month and a half)  we figured this was probably a smart move.  If I'm being honest with you, I would have to say that getting oxygen at the house was a very bitter sweet thing for me.  As grateful as I am to now have the oxygen at our house in case Emmalin needs it, it was a hard blow for me.  I know that sounds ridiculous, but it's just another piece of equipment that will forever now live at our household.  For me oxygen was just something that I was hoping wouldn't be "living" at our house for a VERY long time... but as I said, I am VERY grateful that we have it now for if Emmalin's pulse ox drops again!


~On a very positive note, the Clever City Park got a special needs swing!!  This may not seem like a very big deal, but it is HUGE for us!!  Emmalin loves to swing :) This means I don't have to drive into Springfield anymore so Emmalin can go swing at the park.  We are SO grateful for the City of Clever and for them seeing the need for a special needs park in our little city!!

Emmalin LOVING her time swinging
at the Clever City Park :)

Therapy-Wise:
Emmalin has been working very hard to start gaining ground physically and cognitively.

Em working hard at Vision Therapy

Cognitively we feel Emmalin is starting to show us that she understands more (which is AMAZING).  Physically, I feel like Emmalin  has lost some ground in her shoulder/arm strength, but we are working on it!  Of course we are still working with Emmalin on head and trunk control.  Emmalin actually had the opportunity to start back up Hippotherapy (where she rides the horse) again last week and she gets to start back up water therapy on Halloween.  We are SO excited for Emmalin to have the opportunity to do these 2 therapies!! I have been told that Hippotherapy and water therapy are the best 2 therapies that you can do for a child who has CDKL5.  Altogether Emmalin (at the moment) therapy-wise does PT, OT, and Speech at the Meyer Center and also at her school.  Emmalin also does Vision therapy 3-4 days a week.  Since all of Emmalin's major surgeries are done for a couple of years, me and Jarrad truly feel that this is Emmalin's time to really have the opportunity to gain some ground strength-wise (and cognitively), and so we are trying to give Emmalin every opportunity that we can think of to help her.

Em and the gang at Hippotherapy

Well...all of this pretty much gets us back up to date on everything.  I will try not to wait as long before I make my next post.

                                                                   God is Good!

1 Year Since Emmalin's Corpus Callosotomy

One year ago today, Jarrad and I had one of the HARDEST days of our life!  It was on May 2nd, 2012 that Emmalin had her Corpus Callosoty (brain surgery) to try to help with seizure control.  Between the length of the surgery and ALL of the risks that were involved with it, I would have to say that not only was it the hardest day, but it was also the longest and scariest day I've ever had in my life!  Of course Emmalin did great through it (as she always seems to do), but I can honestly say that we NEVER expected this past year to be as "eventful" as it turned out to be!  To say the least, this past year has been a really hard one!! If I am going to be completely honest I would have to say that in some ways this past year has really seemed like it has been the length of 10 years.  Emmalin has had some highs and A LOT of lows.  Saying that, of course I ALWAYS know that it could have been SO much worse, but what I was meaning was out of Emmalin's 4.5 years of being on this Earth, this has BY FAR been her hardest!

Most of the major things that have happened in the past year:
~Emmalin had her Corpus Callosotomy Surgery
~About a month later her incision got infected and Emmalin was in the hospital an additional 6 days (plus send home with a PICC line for antibiotics - she was on atleast 2 different antibiotics for a little over a month).
~In August because Emmalin was having SUCH difficulties swallowing (she was aspirating foods), Emmalin officially had to COMPLETELY stop eating by mouth.
~Throughout the next couple of months Emmalin had numerous ear infections.
~In November Emmalin was admitted back in the St. Louis Children's Hospital for another 24 hour EEG because we (me, Jarrad, and Dr. Weisenberg) had decided Emmalin was at the point that she needed to have the Vagus Nerve Stimulator (VNS) placed to also help with seizure control because she was still having SO many seizures.
~We also found out that Emmalin was going to need ear tubes to be placed because she was getting SO many ear infections.
~Emmalin was sick on and off from Thanksgiving on and her VNS surgery ended up having to be rescheduled 3 times before she was well enough to have the surgery.
~New Years Day Emmalin was diagnosed with pneumonia for the first time (right lung only).
~Emmain FINALLY had her VNS surgery on January 23rd.  
~The beginning of March Emmalin we thought her neck incision from her VNS surgery got infected and so we made an emergency trip to the St. Louis Children's Hospital.  While we were there, Emmalin had to be given oxygen for the first time because she had a virus and got distressed breathing (so was in the hospital for 3 days)
~ April 25th Emmalin had Strabismus surgery to try to have her eyes realigned and she also got her ear tubes placed (finally)

As I was saying, you could DEFINITELY say that this has been a big year for Emmalin!  And although we are incredibly grateful that things were not worse than they were (because we realize they could ALWAYS be worse).  As you read above, Emmalin's year didn't really start out on the best note on January 1st because that's when we found out she had pneumonia.  So I am going to start a "new year" now, 1 year after Emmalin's brain surgery.  We are REALLY  hoping this next year will be less "eventful".  We plan on pushing forward with therapies and doing everything we can to help Emmalin make great strides in the right direction not only strength wise but also cognitively.

                                                                  God is Good!
                                                       

Emmalin resting peacefully :)

First Time Getting Oxygen :(

Although Emmalin didn't not feel that well while in the hospital, I was able
to catch this small smile while she was awake for about 15 minutes.

The beginning of March of this year (2013), we ended up having to make an emergency trip back up to the St. Louis Children's Hospital.  The first reason we headed that direction was because we thought Emmalin's incision on her neck from her VNS surgery had got infected.   Of course we didn't discover all of this until around 5:00pm on Saturday.  After talking with the doctors we had decided that since it was already so late in the day, that we were going to head that direction at 5:00am on Sunday to put us at the St. Louis Children's Hospital ER around 9:00am (we had to go through the ER because the normal "office" was closed).  To our surprise, at 3:30am on Sunday, Emmalin started having distressed breathing.  I guess I should mention that Friday evening Emmalin had started to get a cold, but when she typically gets colds she doesn't get distressed breathing.  Anyway... so even though we were originally going to the hospital to get her incision checked out, Emmalin also ended up being treated for something completely different, distressed breathing.
Back to that day... by the time we get to the St. Louis Children's ER, Emmalin's breathing was not that great and they immediately put her on oxygen.  I thought that she had just developed pneumonia because she had just got over pneumonia (having it for the first time ever) the beginning of January.  I just assumed that since she had just had pneumonia SO recently that Emmalin just got it a lot quicker this time.  So once they got the oxygen on Emmalin, they did a lung x-ray to check her lungs, to our surprise they were clear.  What we did find was that she had the Rhinovirus and Branchiolitis.
The Rhinovirus is literally just a common cold.  But what we didn't know is that it is VERY common for the Rhinovirus to cause distressed breathing in kids with neurological issues.
The Bronchiolitis diagnosis meant that even though the lungs were just fine, the areas above them were inflamed (which was helping cause the distress).  Emmalin started out on 4 Liters of Oxygen and was then weaned down to 2 Liters of Oxygen by the time she got to her room on the 12th floor (that's the neuro floor).  Emmalin was off of oxygen by 6pm on Monday night and so she was released on Tuesday afternoon (you are supposed to be off oxygen for 24 hrs before you can be released from the hospital).
As I had said in the post title, this was Emmalin's first time to have to be put on Oxygen.  To be honest, it was a sad moment because I have been told that once CDKL5 kiddos have to be put on it the first time, it seems to be easier for them to need it when they get sick after that... I guess we will see (but I sure hope they are wrong).  On the up side, Emmalin did great weaning off of the O2 and for that we are SO grateful!!!

As far as the infection goes that was on her neck, it ended up just being stitches that had come through the skin.  When the stitches came through it created some puss around the stitch and that is what we saw... but it was with the same doctor that Emmalin's brain surgery incision got infected and so this time the doctor wasn't taking ANY chances.  So even though it ended up  being nothing, while we were in the ER the doctor took a sample of the puss and took it to grow in a lab for a couple of days.  While she was being treated for the Rhinovirus, they went ahead and gave Emmalin 2 IV antibiotics JUST in case something grew in the lab that they were not anticipating.  Emmalin was given Vancomycin and Cefepime (which is what she was put on when her brain surgery incision got infected).

So Emmalin was admitted on Sunday AM and got released that following Tuesday afternoon.  As I said before, it was a VERY unexpected trip, but we are SO grateful that everything went as well as it did.

This has been an increablibly hard winter for Emmalin as far as sickness goes, to be honest this has been her worst winter so far with sickness.   To say the least, we are REALLY looking forward to warmer weather!!

God is good!

Our sleeping beauty :)

Emmalin Playing Her "Piano"

One of our amazing friends is letting us use their Kindle Fire.  We found an app that looks like a little piano.  This is Emmalin playing with it.  It's SO amazing to see her open her hands up as she hears the sounds as she touches the "keys".

This may not seem like a big deal to some people, but to us this was a HUGE step (or maybe even leap) forward for Emmalin and learning to use technology :)