Wednesday, April 22, 2009

Seizures, Smiling, Boxes, and moms....oh my

I have so much to blog about today, that my head is spinning. This could be a long post people so strap on your big person boots, and hold on for the ride. Let me preface this with reminding you that I am a blogger, not a writer. My sentence structure, and grammar could always be better, but I simply speak from the heart. I feel I lose some of that if I have someone proofread my errors. So thank you for bearing with me.

Yesterday I walked in the door to see my lovely family. Jude was lying on his blanket with his head facing the TV, and I called his name in my high pitched momma voice. He turned his head directly at me, and flashed me the biggest smile ever. I was so excited at this that I scooped him up in my arms, and Emily snapped another huge smile.
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I think the little boy was happy to see his mommy, but the encouraging thing here was his brain activity, and his response. After my welcoming, I suggested we go on a family walk in the beautiful sunshine. It seems our TX weather has finally kicked into high gear, and we are experiencing warm gorgeous days. Emily decided to ride her bike with her ..... ahem......dragon helmet (sigh)....while the rest of us walked.
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We enjoyed the great outdoors, but I could tell Jude was getting sleepy. We went back inside, and my little boy ate 8 ounces in one sitting, and then fell asleep on his daddy.
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It seems Jude is going through a growth spurt, or just growing into wanting more food. We have just increased his prevacid to twice a day, and that could also be the culprit for the increase in food. I am guessing his reflux is a lot better, and therefore Jude is able to eat a lot more. Although to our sleepy dismay he woke up at 3:22 this morning to suck down another 7 ounces. We are happy he is eating, and we hope he continues to thrive in that department. We count our blessings each day that to date there has never been a mention of feeding tubes, or other issues where Jude is concerned.

While Jude was resting comfortably on Mikes tummy, Emily came and sat down next to me. She smiled, and said she had a question for me, and I told her I was all ears. She was asking what she could do to help others, and referenced the March for Babies campaign I worked on in honor of Maddie. I asked her who she would like to help, and she mentioned animals, or children. She discussed collecting dog/cat food to take to local shelters, but then nixed that idea. She then came up with, "Emily's smiles". They are boxes made for the Children's hospital in Dallas. Jude has been there on several occasions, and Emily explained she knows well how boring hospitals can get. She wants to make boxes filled with smiley objects for the patients AND their siblings. She stressed, AND THEIR SIBLINGS. Do you think she was making a point?? I assured her I would do everything I could to help her with her project. I then told her how very proud I was of her, and how great it is she has such compassion flowing through her. We sat and researched where we could buy boxes, smiley objects we could get, and labels we could make. We figured if we collected donations she could spend about $15 a box, and make it nice for the kids. I emailed the child life coordinator with Dallas Medical City who replied this morning, and was thrilled with the idea. We are now hunting a 1 page website, and will move on from there. My Emily, she makes me so proud! She has been through a lot this past year, and has come through it a better person. To me that shows amazing strength, and a determined little being!

Now on the sad note. Below you will find the seizure video I spoke of. It's only 30 seconds long, but it is graphic, and disturbing. I plead with you not to watch it if you think it will bother you. I showed the video to a friend at work that said, "I had no idea baby's seizures looked like that, I thought they just shook". That is a common misconception with infantile spasms, and hence my posting of the video. Infantile spasms can be subtle, to violent like Jude's. His seizures actually started off as a simple rhythmic lowering of his head, and an opening of his mouth. There were no audible sounds like you see in this video, and no whimpering. We only caught his spasms because we watched other U Tube video's, and began to suspect something was wrong. If it were not for those parents posting video's of their child's seizures we would have been lost until these violent episodes appeared. . The spasms then blossomed into this vile evil inhabitant of my child below, and then became even worse (I won't ever post that video). Before having a baby I feel like mothers seeking a pregnancy wish to be a member to, "the mommy club". You feel a bit left out until you have/adopt a child because you cannot fully grasp what being a mother is about. Little did I know there were sub categories to the mommy club. Groups existed like, Mommy's with autistic children, Mommy's with down syndrome children, and Mommy's with seizure babies, etc. They are sub categories one never thinks they we will join. No mom walks by a sign up sheet in the hallway, and puts their name of these lists for their children. Once we are placed in these groups though we find a way to settle in. After the shock, and anger wears off you find how blessed you are to know, and care for this little human being placed in front of you. It's an understanding that you will always have a "baby" with you, but you never mind. It's being a member of a club, that no one else can grasp unless they are a member of the group too. I am just starting my journey down this path of being a mom of a special needs child. I can tell you though that I think being a special needs mom, means simply realizing your a mom to a very very special baby. This is what a stroke can do to a baby, I hope you never experience this. If you think your child shows signs of seizure activity, please see a specialist.

Now since I know that video can be sad, I am going to leave you with the below video showing how amazing Jude is doing now. This was taken yesterday, and if you can ignore my high pitched momma voice you can witness his pterodactyl laugh. After we got his seizures controlled, and his medications reduced, Jude started learning regular development. Some children never find a regulatory medication, and therefore do not develop any further. Those moms in that "mommy group", and in my prayers every day! We hope, and pray that with our help Jude will continue to learn new abilities. Blessings, and have a fabulous day.

Stroke tip of the day: Make sure your child gets some form of exercise each day. Local sports, swimming, walking, running, and biking are great ways to achieve healthy levels of exercise!


Mara said...

Jen- I have another idea for Em that would cost very little. How bout an "end the R word campaign" at her school. I find that kids use the word all the time withput realizing how it could hurt others. Maybe she could talk to her teacher and they could make posters to hang up school in the halls. Pass the word not to say the "r" word and correct anyone who does. It could make a HUGe difference to teach kids at an early age and stop the chance of hurting anyones feelings. If she does it well enough- the kids at her school will go home and teach their family members and others not to say it. Kids can have a big impact ! Just a thougt in addition to the Emily Smiles- which by the way, I love. And Caitlin loves the "and sibling" activities at our childrens hospital too !!

Cjengo said...

Great idea girl, but Em already does that. It's funny you brought that up because she is quick to tell someone that is not acceptable. She also helps with kids with special needs at her school. She started a campaign to incorporate them more in with her class even though I explained to her that they aren't seperated because people don't like them, but only for their safety. She still wouldn't accept that answer. She is a go getter I tell u!

Anonymous said...

Baby Jude is just amazing and one of the most beautiful children I've ever seen!

I'm so happy that his medication is working and allowing him to be the happy baby he deserves to be! And for ya'll to be able to enjoy seeing him be happy!

Keep us posted on Miss Emily's idea... maybe you could set up a PayPal address for donations?

Midwest Mommy said...

That is great that you posted that video. I honestly have never seen a seizure with a baby. Poor little guy! But that smile as you walked in the door pure heartmelt!

Anonymous said...

Just when I thought I couldn't be more impressed with Em, I am.
Once you work out the details, I'd like to prepare one of your boxes for the Children's Hospital where Parker was born. It is a fabulous idea!
And, ever since you talked about watching the seizure videos on YouTube, I had to look myself. I appreciate you sharing Jude's videos and your insight!!!!

Amy (Turtlemom)

Linda said...

I can't wait to see you guys tomorrow!! I hope I get a smile like that!!!!

Bronx Cataldo's said...

The video brought back memories. ITs breaks my herat to think that not only my child had seizures like that but that other children go through the same thing. Good work Jen.