What is a Mic-key button?!

In this video I explain what it is, why Conner got one, NG Tube vs. G Tube, what it looks like, how it works, and my input on it. I hope you find it helpful!! I hope what ever you choose works for your kiddo! 🙂
Click the link below to be directed to my vlog

What is a Mic-key button?

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I hate seizures so much

Such a sad week, Conner’s seizures have become worse. He now is having 3-5, 1-2 minutes grand mals 70-100 infantile spasms a day. He desaturated during his grand mals, and is now foaming at the mouth with these ones. I haven’t needed to give him his emergency med yet but I can tell they are getting worse. It takes him quite a while to breath normal again afterwards. Please keep us in your prayers. We need as much strength as ever right now. Thanks everyone for keeping up with him through his page http://www.facebook.com/HopeforConner  He is so strong..

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Hospital Freebies!

WARNING: I will come off as a cheap skate in this article!

Since my son was born, we have been in the hospital too many times to count. Everyone of those times we came home with double the luggage. Conner (our son) has had issue after issue. Seizures, heart block, feeding tube surgery, pace maker surgery…lots of things, pretty minor. Usually the nurses ( the nice ones, lol) will send you home with plenty of supplies. I NEVER turn down freebies. I’m sorry but my child already is expensive, I would appreciate saving money where ever I can 🙂 Here is a list of freebies I have received from my sons hospital stays, and my uses for them. Enjoy!

– Gloves ( I use these to clean up puke, daily… yeah I hate life some days)
– Syringes ( I use daily for dispensing medicine )
– Extra feeding bags ( G-tube fed, you can never have enough! )
– Thermometer ( Always smart to have extras )
– Diapers and wipes ( No brainer… )
– Donated blanket or stuffed animal ( Cute )
– Comb ( To tease my own hair, LOL! )
– Lotion ( Just because )
– Aqua-for ( Conners lips are always chapped)
– Face masks ( Germ protection)
– Medical tape ( You never know)
– Gauze pads ( G tube site)
– Adhesive remover pads and spray
( Because corners biggest fear is bandages)
– Baby soap and lotion ( Just because)

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Get your doctor to listen to you!

How to make your child’s doctor listen to you!

1st : VIDEO TAPE (If possible) what your child is doing.

For example, if you suspect any of the following, try your best to capture it on video.

Autistic features, seizure activity, pain, loss of coordination, or anything that is visual.

Bringing only your words to the table when the doctor asks, “What going on?” You might as well be walking into a courtroom without evidence! Keep a recording device on you at all times so it’s ready to go when you notice the change.

This is based on personal experience. When my son began having Infantile Spam’s. I brought him to his pediatrician, I told him what I was seeing. He said “Kids do funny things sometimes”. I knew he was wrong. So very wise advice was given to me by another TSC mom. “Video your son having his spasms” she said, and so I did. Doing this made the world of difference. We drove our son to the city and showed every doctor that came in to see him, the videos. As I thought, Conner was then admitted and diagnosed with Infantile Spasms. TRUST YOUR GUT!

2nd : JOURNAL your heart out. Keeping a log of your child’s activity is important. When the doctor asks you “When did that begin?” “How often?” “How long does it last?” Questions like these can be referred back to your journal which makes it a whole lot easier. Instead of just sitting there and saying “Oh I don’t remember…” It is amazing how much they appreciate your seriousness of your child’s care. They respect your efforts so they know that you will be expecting the same effort from them!

3rd : MEDICAL BINDER’s are very helpful. You can make your own or ask your resource center if there are programs that provide you one for free. Conner’s binder consists of Medication lists, dates of surgery, clinic notes, MRI and CT scan disks, and lots of other important information. I don’t know about you, but I hate being asked the same question a million times. My son’s binder has become my best friend. The first thing I do is hand them his binder. I hand it to his pediatrician, the ER nurses etc…All they have to do is make copies of what information they need to obtain.

4th : RESEARCH. I know the internet can be scary and some of you may disagree with me, but I have found researching my son’s symptoms, extremely helpful. The stories you find of other parents could possibly save your child’s life. When Conner was on ACTH (Steroid for Infantile Spasms) it began making his tumors in his heart grow! Thought the big city hospital never heard of such a thing. I printed out what I found and brought it to their attention. They quickly ordered an ECHO, long and behold, I was right. They immediately stopped his medication. Who knows what would have happened if they didn’t believe me.

I hope you have found this helpful. Please contact me if you are having difficulties communicating with your doctor. Remember that the doctor will only be as polite as you are to them. So only be stern when you feel the need to be. Again…trust your gut, you are usually right. Yes some of us may be looked at as “Paranoid”, but my motto is, ”It’s better to be safe than sorry!”

Here is a link to a video I took of Conner’s weird symptoms. I already knew they were Infantile Spasms, the beginning diagnosis was Multifocal seizures but they transformed into IS a month later.

https://www.facebook.com/video.php?v=457172697667480&set=vb.431526783565405&type=3&theater#

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How to set up your kangaroo Joey junior feeding pump

Hey there care givers! I just happened to come across one of my old videos and I received over 12,000 views! Unfortunately I do not remember how to log in to that account, but I am going to post the link below and I hope you all find it helpful! Please comment if you have any questions or would like to add something I left out. http://youtu.be/qFsoYoSyNv8

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Conner’s Journey part 2

“Karissa…….Karissa….Wake up….” I slowly opened my blurry eyes. Focusing on the blonde woman in my face, I tried to make sense of where I was. “ Your son is doing well. He didn’t need any help. “ Then she disappeared. I felt like she was lying to me or I was dreaming. In walks my husband with our camera. I see for myself, a video of my son lying on a table, kicking his legs out and crying. He looked like a healthy normal baby. How could this be? Was it possible he didn’t need any help? I cried but still felt numb.

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I was in complete shock. I made myself a video blog when my medication wore off a little. I spoke about how I was feeling and how Conner survived! I just kept thinking how much I wanted to hold my son. Because Conner was in the NICU and I was recovering from my emergency c section, which by far is more painful than a regular c section, we had to be apart. I was loaded with medication for the severe pain so everything is pretty foggy.

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The next day my husband called my moms phone as she sat beside my bed. She let me know that I had a surprise coming. I had a feeling I knew what it was. I put on makeup incase there would be pictures. My husband walked around the curtain of my bed holding…what I thought was impossible…my son. The one who continued to kick every now and then reminding me “ Hi mommy, I’m still hanging on!”. He was so tiny, I had never been so scared to break something as I was then. I held him gently in my arms. Still numb to it all, I cried. I rocked him side to side regardless of the pain. He looked just like his big sister.

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The nurses had made exceptions for Conner to leave the NICU since he was a miracle baby! That was the best surprise ever…I didn’t want them to take him away. He could only stay for a little bit. It had been sixteen hours since he was born. I hadn’t soaked him in enough…I needed more of my Conner. His sister Lacie got to meet him while he was in my arms. She didn’t know what to think. We didn’t prepare her for having a baby brother. We didn’t talk about him in front of her. I could tell she was a little put off.

We were asking to meet with the doctors in the NICU to discuss Conners MRI and genetic testing. They explained to us that Conner had numerous tumor’s through out his brain. They told us he had Tuberous Sclerosis Complex type 2. It didn’t come from either of us. He developed it totally on his own. Apparently it was just a freak thing. The doctor also mentioned that Conner would likely would have learning disabilities and seizures later in life.

As I held him in my arms, I starred down at his little head and couldn’t wrap my head around the fact that there were these awful little tumors inside of his brain! But for now, he was perfect in every way, and I decided I was going to enjoy every moment without the fear of his future.

Only four days later, we were ready to go home. I never imagined this moment would come. Hence, why I was totally unprepared. I didn’t bring a car seat, or anything. The hospital donated one to us! We were so grateful. Boy, did I have some shopping to do! We strapped Conners little body into that huge car seat. Joel was so scared to drive with Conner in the car. It was actually really cute.

Walking into our home with our son was surreal. I wanted to stay up forever and enjoy it all, but I was so tired, so we went straight to bed and Conner slept with me. The next day my mom brought a bassinet, clothes, diapers, and everything else we needed. I had a few things hidden away like a breast pump, a few outfits, and a bouncer. I placed the crib and swing out in the garage before his birth. I didn’t want to see anything that would make me sad when we came home without Conner.

I was so in love with my son, I felt on the clouds for weeks! Our friends from our Kingdom Hall came every night to drop off dinner, and friends would come clean my house and get groceries for us. We felt so loved and taken care of. My mom put together a last minute baby shower, which didn’t at all seem like a last minute thing. It was beautiful! We had about 80 people come. It was overwhelming how many came. We received everything we needed of course. Conner was 1 month old at the time. People came up to him and cried while he wrapped his little hand around their fingers. It was a very special day.

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One month later EVERYTHING changed. Joel and Lacie went to meeting ( or as you would call it, a church service) Click here to find out what “Meeting” is http://www.jw.org/en/video-kingdom-hall/ I was home by myself with Conner. We were laying on my bed and all of a sudden a face changed and looked scared. His arms went up and his eyes began to roll. His whole body shivered. It lasted 15 seconds. I sat there crying trying to call Joel, he didn’t answer so my mom rushed over.

I knew he would have seizures but not so young! From that point on he had grand mal seizures every hour and the longest lasted almost 3 minutes. I was terrified. The doctor started him on a seizure medication called Keppra. It helped but it took a few weeks to figure out how much he would need to control them. Finally he only had 5 a day which was reasonable considering how many he was having before.

Conner began having infantile spasms at 7 months old. I was extremely depressed because Conner had forgotten how to laugh, smile, and babble. He even forgot how to eat. He would have over 200 individual infantile spasms a day and if he wasn’t seizing he was sleeping. He was never awake to eat, and he eventually became so weak to eat and forgot how, that he had to have G-tube surgery so he could eat. Infantile spasms have been his hardest challenge. Here is the link to his news video of that time. http://m.krcrtv.com/With-a-Total-of-19-Tumors-Everyday-is-a-Battle-for-Baby-Connor/18147000

From age 0-5 is when children develop the most. Conner has had so many seizures that obviously effected his milestones. He gained back smiling, and laughing after trying a bunch of different medications. Only some of them showed a slight improvement. He went 3 months without any seizures and he began to babble again! The seizure break happened completely on his own.

I thought this is it, he’s better! Then while shopping in Target one day, he was laying in the cart and had a cluster of 20 spasms. I called my mom and cried on the phone. Since then I knew things would never be stable. He would have small breaks and then begin having them again and again.

Conner is globally delayed. He is 2 ½ now and crawls a little, babbles, and laughs. He still has close to 100 spasms a day. Conner gets medicine 3 times a day. He recently had a pace maker put in because he developed 3rd degree heart block. He has healed up good, and it’s amazing to hear his heart so regular. He continued to have ECHO’s and halter monitors done after birth. He always had a crazy arrhythmia.

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Our life has been so different since Conner came into our lives. I have flown with Conner too many times to count. The town we live in offers nothing to Conner. Anytime he is having problems he is airlifted to the city. Conner has made us a closer family. Of course we come across hard ships, but we always make it through. California offers so many great things to kids who have disabilities. Conner sees 5 different therapists! It really had made a huge difference.

I love my son exactly the way he is. I wish he didn’t have to suffer the way he does, but he is the bravest kid I have ever known. I know he will be my baby for life, but I’m okay with that! I’m glad I get to have my baby forever rather than not at all. He has humbled all of us including his sister. Lacie loves to take care of her brother. Of course, we have a hard time juggling attention between the two but we make it work. She is good at communicating and letting us know she needs us.

If you others are going through this or think you might be, I know this sounds cliché’, but you really are not alone. You have a huge group of parents to help you through. Including myself, please contact me if you have questions or need help. I will do my best… Things won’t be this way forever.

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