Wednesday, July 24, 2013

We've been busy.

Here's a run down on what has happened since my last post.

Cason has been diagnosed with a Chiari Malformation. We are still unsure at this point if he needs surgery. This is causing minor hydrocephalus. He has also been having seizures. We tried a new medicine and his body metabolized it too quickly. It was like an overdose. He was in a coma for 18 hours. About a month ago he was admitted to the hospital in anaphylactic  shock.  He did not have any of his normal allergic reaction symptoms and this was very delayed. It was scary!!! He has also seen the allergist at National Jewish in Denver. He wants to admit him to get his eczema under control. On a better note, we have taken milk, soy, peas, broccoli, cauliflower, and carrots off of his food allergy list!! :)

We moved ... Again ... The end of April. The main sewer line had broken in the house we were renting. The landlord refused to fix it. There was literally raw sewage filling up the backyard. We are still in a battle with that! 

Callans blood sugars have been crazy. Today his A1C was to high to read. :( I feel like a failure. I give it my all, and my all isn't good enough. The dr decided to take him off of the pump for a little while in hopes that we can get better control. I am frustrated!!

Wednesday, March 13, 2013

Hydrocephalus

My youngest son, Cason, has been having seizures for about a year now.   He has seen a neurologist, where they did an EEG, and the results were normal.   They diagnosed him as having breath holding spells, even though they had never seen the actual seizure part.  Pretty much they thought I was over exaggerating and making things up.   I finally got a video and took it to the ER with me after he had 2 seizures in a row.  The dr there said it was definitely not breath holding spells, and she was going to call the pedi neurologist.  That pedi neurologist was the same one that we had seen, and diagnosed it again as breath holding, OVER THE PHONE.  She never even looked at the video.

So yesterday, Cason had 3 seizures in a row.  Nothing that I know of triggered them. He wasn't upset before hand.  We were walking into the kitchen, and I heard him fall behind me.  He is only 2 .. he's clumsy sometimes.  I turned around, and he was in full on seizure mode.  The entire time he is not breathing.  His eyes are rolled back and to the side. His hands and feed are curled, and his arms and legs are arched, and going to the side.  He falls asleep IMMEDIATELY afterwards.  He then wakes up crying.  This time, he woke up, and immediately went back into another seizure.  Twice.

My husband told me to take him to the ER.  (Something I am very wary about doing because of all the crap I've been given about it.)  FINALLY the dr orders a CT, and lab work.  His labs or normal, but his CT is not.  He has hydrocephalus.  The dr said it's a lot of fluid, but isn't to the bad point yet, and we will need to see a neurologist again.  THIS is what is causing the seizures for almost a whole entire year now.  I am mad, upset, worried.  How do I know when it's to the bad point?  What if everyone just blows him off again?  I'm just so fed up with drs and hospitals at this point.  They are supposed to be helping people, and instead they make me feel like I'm over reacting when I KNOW something is not right.   :(

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Thursday, February 28, 2013

The Diaversary Club.

It's been a minute .. or maybe a month or two. ;)     A lot has happened.   I'll post about all of that soon!   I just wanted to make a quick post about my new project:




As Callans first diaversary approached, I tried to think of ways to make the day special for him. I didn't want it to be a sad day, and let diabetes win. I wanted it to be a day that he looks back on and says "Look how far I've come!" So I started a diaversary card exchange in my facebook group that is for parents of babies/toddlers with diabetes.

When Callans first diaversary came, the cards and even small gifts, were pouring in. Callan was so happy, and excited! When I told him that these were from other kids with diabetes just like him, he was even more excited!! It was an amazing day.





Callans FIRST diaversary cake!

I want to extend this opportunity to the rest of the DOC. It doesn't matter how old you are, or how long since the diagnosis. I want to help you, or your little one feel special and not so alone on that day!

I am looking for volunteers to make cards each month. For your privacy, these will be sent to me, and then I will send all of them to your address. This is free! You just need to sign up!

If you are interested, please send me a message on Facebook through The Diaversary Club or you can email me!




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