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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