June - CDKL5 Awareness Month!!

Here are some of the pictures that were posted about CDKL5 during CDKL5 Awareness Month in June (a bunch of our logos):

LOVE THIS STAR!!!

About the Star and why they chose it for our logo

Love This!!

Love this and wanted to share:

Little Green Dress

Back in May we got the opportunity to wear a "little green dress" that is literally being sent around the world to every CDKL5 family.  This dress was originally one little girls dress that lives in the UK... Her mom decided that since it was one of the CDKL5 colors it would be a good dress to try to pass on... well, it started going from one person to the next and before you know it, they decided they wanted it to try to go to ever person with CDKL5...So the idea is just that!!  This little green dress is going to touch every single CDKL5 person (I say person because there are some adults) and by doing this, this little green dress unties us all.  If they are small enough to wear it, then they do... if they are too big for it, then they put it on a bear of some sort and take a picture with it.  The boys have a tie and then they put the dress on a bear.  So as I said, back in May we had the opportunity to get it and take pictures in it... there were about 29 families that had the dress before us.  It was an amazing experience and one that I am grateful we had the opportunity to have!!  GOD IS SO GOOD!!   Here were a couple of my favorite pictures that I took (with A LOT of help from one of our nurses):

She was NOT happy about the thing on her head or the fact that we were taking her picture!!

February and March Hospitalizations in 2014

In February and March of this year (2014) Emmalin was hospitalized 2 different times.  The first time we thought she was continually seizing all night long and so we were put on the 24hr EEG.  The EEG showed that Emmalin was not seizing 24/7 like we thought (thank goodness) and so we were discharged.  Then in March Emmalin got the dreaded Rhinovirus.  The Rhinovirus is a common cold, but for kids like Emmalin the Rhinoviruse makes their pulse ox drop, which makes them need oxygen and thats why they have to be admitted to the hospital.  Jarrad and I had decided that from now on if Emmalin needed to be hospitalized that we were going to have her taken to the St. Louis Children's Hospital, so in March Emmalin had her first ambulance ride (well technically 2 - one from our house to the Cox South ER and then the 2nd from the Cox South ER to the St. Louis Children's Hospital).  Here are pics from both hospitalizations.  The cool thing about the first hospitalization in February is that she got to have a visit from one of the therapy dogs up there.  Emmalin seemed to really love it (it's something we will consider doing again).    In both cases Emmalin recovered quickly and has been healthy enough to stay out of the hospital since.  This is HUGE!!  This is also a BIG year for us because it's the first year since she's been born that we don't have ANY surgeries planned!!  So this year we plan on focusing on therapies and getting Emmalin stronger cognitively and physically!!

                                                                  GOD IS GOOD!!!
Here are some pics from the 2 hospitalizations:
                                                               

Headed to the Hospital (she's asleep)

EEG with a cap that wouldn't stay on - lol

The therapy dog that literally crawled up to Emmalin!

Yes, it kissed Emmalin.  I gagged and quickly got the dog away from her mouth!!

In the Ambulance on our way to the St. Louis Children's Hosptial

In the ER at Cox South getting some cuddles with Grandma!

Review of 2013

2013 had some rough times, but some great ones also... just a quick review:  January we finally got to get the Vagus Nerve Stimulator implanted.  In March Emmalin got the Rhinovirus and had to be hospitalized,  in July Emmalin got to do sparklers for the first time and we had a great 4th of July!!  In September Clever got a special needs swing!!  Also in September Emmalin got the Rhinovirus again and she even aspirated for the first time :-/,  In October we had our Benefit.   Emmalin did some water therapy and hippotherapy and Christmas came and went.  Although times were rough, all in all it was a good year!!  God is Good!!  Here are some of the pics that you missed after the benefit:

Emmalin isn't happy they are touching her head -lol

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Emmalin with Santa :)

Opening Presents 2013 Christmas

Opening Presents 2013 Christmas

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 ."