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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Tuesday, September 25, 2012

Almost here!

Tomorrow is a big day. It's the day I've been thinking about for almost a year now. I'm sure some of you already know what I'm talking about ... But for those who don't ... Callans PUMP will be arriving tomorrow.

We haven't had our training yet so it's not officially our first day but still! I can't wait to hold that little piece of hope in my hands. Just to be able to touch it, knowing (hoping) that Callans bg will be more regulated makes me feel like its Christmas!

Callan was unsure about it at first, but now he's soooo excited. We've been watching endless videos on YouTube of site changes and he is 100% on board. He even got a special Spiderman doll in the mail today ... Complete with his very own pump! He had the biggest smile on his face when he told me that Spiderman has diabebes just like him! He melts my heart.

Saturday, August 25, 2012

Tired.

Wednesday night Callan started complaining about a headache. His bg was actually really good for once, and he had no ketones. So I gave him some Tylenol and he went to bed.

The next morning he woke up at 485 and had large ketones, so I called the dr and we went right in. They discovered he had an ear infection, monitored him in the office for a while, and sent us home when his numbers went down. He started throwing up, but the dr contributed that with being so high then dropping quickly. I checked throughout the day and he didn't have any ketones so I THOUGHT we were in the clear. Ha!

At 8pm he was 114, without ketones, but he had a bit of a fever. Something told me to check him again. At 9:15 he was 490, with large ketones, and a 102 fever. I took him straight to the ER.

We waited for an hour in the waiting room until the staff finally got tired of me explaining what can happen with high bg and ketones. After lab work they told us that he was on the verge of going into DKA!

He was admitted, and diagnosed with viral pneumonia. He had a fever of 104 off and on yesterday, and he was super out of it. Today he woke up feeling much better and we were released.

I can't imagine what might have happened had I not taken him into the ER. I had been giving him small doses of insulin all day and he still almost went into DKA! Keep an extra close eye on your babes when they are sick. It can take a turn for the worst sooo quickly!!

Thursday, August 9, 2012

Hi.

And I don't mean hello.

Every single day for the past few weeks Callan has had the dreaded "Hi" reading. I wish the meter was just genuinely telling me hi. Maybe it knew I was having a bad day and was reaching out to talk to me. To let me know that everything is going to be okay. But, unfortunately, our meter isn't that friendly. It means that Callans bg is over 600.

I have adjusted his insulin, restricted carbs, drowned him in water. Nothing is working. I know this means that we are officially out of the honeymoon stage and that makes me a little sad.

I don't want to even start to think of the long term repercussions this is having on my sweet 3 year olds body. It makes my heart hurt. :(

In a few weeks we have our first appointment with our new endo in Denver. I'm hoping and praying that we can start the pumping process. Maybe even get a CGM.

Please keep him in your thoughts.

Monday, July 23, 2012

Dear Diabetes.

Dear Diabetes,

I hate you. Not like I hate coconut or the stomping of feet in the apartment above us. My hate for you is deep. Like the hate for someone who hurts innocent children. The hate for someone who takes precious childhood memories away. The hate for someone that sucks the happiness out of the day in one split fleeting second. You, diabetes, are the most hated of all.

But guess what? You cant win. You can try to take our childs sweet innocent memories and replace them with horrible ones of finger sticks, injections, and constant doctors visits. And you can keep on trying. But I will not let this go down without a fight.

I will give my son the most normal wonderful childhood that anyone can hope for. I will replace your pain with joy, frustration with peace, hate with love.

ALL children deserve to have a childhood and I will fight you to the death to make it so. I don't care if it takes every ounce of life within me. You will never win.

Sincerely,

Your WORST Enemy

Mr. Cason.

My 1 year old has had quite the hard life. He was born 5 weeks early, spent 3 weeks in NICU, 2 of those being intubated. He has severe food allergies and is developing new ones everyday!

Over the past month or so he has been doing something that scares the crap out of me! He will get mad and hold his breath until he turns blue. During that time his body is stiff, hands in fists, toes curled, and his back is arched. It looks like he is having a seizure!

Friday night he got really mad at me because his food was all gone and he wasn't ready to be done! He did the breath holding bit, but this time it was different. He didn't breath for over a minute. His eyes were rolled back in his head and I panicked! I called 911 and the poor lady couldn't understand a word I was saying! The ambulance got there within seconds, and right as thy came up he started breathing again.

Today we made a trip to the pedi to get to the bottom of it. He was diagnosed with breath holding spells. The dr is referring him to a neurologist, and has ordered an EEG with sedation. (This makes me nervous because he's had seizure like activity while on Ativan and Versed while in the NICU!)

The dr also did bloodwork and it came back positive for Celiacs disease. We also added a new allergen ... Milk! :(

This is so much to take in and I'm feeling super overwhelmed right now!

Monday, July 9, 2012

Yikes.



I can not believe it's been 2 whole months since I've posted anything! I guess we've been a little busy!

Callan has been having crazy high numbers lately. I'm hoping it's from traveling.  We've pretty much been going going going since April!  In the past 3 months we've been to 6 states, "lived" in a hotel for 2.5 months, and took a trip to visit my family in California (where we also got to visit Yosemite, & Monterey!)  I'm hoping things start settling down, so we can get back on track.  BUT we are still living in an empty home, waiting to go get our stuff from storage in New Mexico!  We've been sleeping on air mattresses for almost a month.  I know I can't wait to get my bed up here to Wyoming!

We've also added 2 more allergens to Casons list. Peas & fish. They were both pretty bad reactions, but luckily did not require the epi-pen!  Although last month we had to for the very first time.  Someone touched him who more than likely had ranch dressing on their hands. (Ranch=Mayo=Eggs!)  His lip swelled up, and his face started breaking out in welts. My husband gave him the shot and it was pretty scary!  His face turned blue, and almost immediately cleared up. I'm hoping we don't have to use it again, but I'm pretty sure we will have to.  Cason is also going through a tantrum stage. (He's only 1!)   If he gets mad he will hold his breath, turn blue, and almost pass out! It is so scary!  He's my youngest of 5 and I've never had to deal with this before!

I hope y'all are doing okay!

Callans first time at the beach! :) 

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Wednesday, May 9, 2012

Hello?

I'm still here!  I apologize for going such a long time without writing anything.  Things are a little crazy over here.

2 weekends ago we drove back from Rock Springs, WY to Las Cruces, NM with the 3 youngest boys straight through. That's 17 hours! The entire next day & parts of Sunday we packed up our house, and put everything into storage.  Sunday afternoon we took off for Sheridan, Wyoming!  We have been here for almost 2 weeks.

Last weekend we took a trip to Rapid City, SD and had a mini vacation.  We went to an indoor waterpark, Mount Rushmore, Custer State Park, & Devil's Tower!  We had so much fun!










Can I also say that I love love love Wyoming?  I really didn't think that we would ever move here. (We used to live in Northern Colorado, so I knew what it was like here.) But I it has sunk it's beautiful scenery, extremely friendly people, and wonderful (spring) weather right into me and I don't ever want to go!  Ask me about this again in the winter. I will be a hermit then! :)

Callan has been doing really good.  It was so surreal to check his bg with Mount Rushmore directly in front of us!  Like almost a little freeing ... we can travel the U.S. and be in a hotel for a month and
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Wednesday, April 18, 2012

Wyoming!

Our lives have been turned upside down .. again.   Last Wednesday my husband lost his job.  We spent all day Thursday applying for everything that we could find.  This was so sudden, and we were not prepared at all!  Friday he had a phone interview with a company in Salt Lake City, UT.  They offered him pretty much the same position as he had with his prior company .. but it was in Rock Springs, Wyoming .. and we would need to be there by Sunday.  Did I mention this was on Friday???

So Friday night we started packing up stuff to go with us, as well as the house.  Saturday morning we had our JDRF walk.  It was a little cold, but fun!



Saturday we spent the day running errands and packing up more stuff.  Sunday morning we took off for the great state of Wyoming, our car full of clothes, diabetes supplies, and diapers.    And that's where I am right now!  Sitting in a hotel, trying to find a not so expensive place to rent!  In 2 weeks we'll be heading back down to New Mexico to pack up everything and truck it up here. I'm not looking forward to that 28hr round trip drive! :/

So, I have a question. Do any of y'all live in Wyoming?  Or do you live in a state that doesn't have any pediatric endos?  I've been googling, and I can't find any in this whole entire state!  The closest one is in Salt Lake City, 2 hours away. How would that work if Callan uses a state medicaid?  (Callan qualified for disability through SSI because of his t1d, and automatically gets medicaid now!)

Thanks in advance. :)
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Sunday, April 8, 2012

Happy Easter!

Oh what a busy week it has been!

Tuesday we took our trip to ABQ to see the endocrinologist.  It has been in the high 80's for the past few weeks here.  Well, that day it decided to SNOW! We had left at 6am, I was in some sweat pants because it's a 3.5hr trip there. I thought I had brought a pair of jeans and capris with me. Think again!  I had capris and flip flops in the snowy 32* weather.

Callans appointment was okay. His A1C went up from 8 to 8.7.  :/   We've had a lot of highs because he's been sick.  He is also being referred to a GI because he tested positive for Celiacs.  Just another thing to add to our bucket of things going on!  His appointment lasted a whole 20 minutes ... seems like such a short appointment for a 3.5hr drive!!

Afterwards we went to our most favorite place to eat, Red Robin. :)  There isn't one where we live so we only get it once every 3 months!  After that we went to the Albuquerque Aquarium.  The boys had so much fun!

Callan was afraid the fish would get him!




Cason also had an appointment with the dermatologist in ABQ.  They didn't really tell us anything that his allergist hadn't already told us, so it felt like a waste of time!  He has been having some issues as well.  For the past week he's had white diarrhea, and has been throwing up!  I'm afraid he's developing an allergy for milk.  

Thursday night our pedi told me to take him to urgent care.  We went there, and they sent us straight to the ER.  Cason had a rash on his face that looked like he had a sunburn, plus the diarrhea, vomiting, and a fever of 101.   The ER dr wasn't concerned at all. He asked me why I would even bring him in for a rash since he already has eczema, and that white diarrhea is normal!  I asked him a question about what was going on with Cason and he told me to stop trying to find things wrong with my kids!  Like I REALLY need more things wrong!



The next day I took him to his pedi and she thinks that it was just fifths disease.  I'm not too sure though.  She ordered a stool sample, and that's sitting in my refrigerator until tomorrow.  She's also referring him to a GI. 

I hope everyone had a less eventful week than me, and y'all are having a great Easter!


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Sunday, April 1, 2012

3:36a ramblings.

It's 3:36a, and I can't go back to sleep. :/

I actually feel like I haven't slept in days.  Callans numbers have been crazy!  He pretty much has been in the 200-500's on a consistent basis since Thursday.  But he will have crazy lows too. Like last night. At 11:30p he was 388, and at the 2a check he was 60! For breakfast this morning he was 102. At lunch his meter said HI and it wasn't telling me hello!   He hasn't had any ketones though, but this is driving me insane!  If we adjust his Lantus to a higher dose it seems like he has consistent lows, and no matter how much Novolog we give him he always seems high!  Except at the times when you don't want him too low .. i.e. night!

My other children probably think they have diabetes too.  I have checked Corbin & Callan so many times in the past couple of days, my husband thinks I'm going nuts.  Corbin is always hungry (not like him at all!) and thirsty!  Cason has ginormous diapers without a lot of liquids.  They always come up normal.  Does the paranoia ever stop?

Cason has had a tough couple of days too.  He had an allergic reaction to a flipping french fry!  He immediately got red welts on his face and back, and he didn't even swallow it!! He already doesn't want to eat solid foods, and his crazy food allergies make me not want to feed him anything new!  He can survive off of milk, pureed veggies, fruits, and yogurt for the rest of his life, right?

Red welts after eating a french fry. :/

We see our endo on Tuesday, as well as a dermatologist for Cason.  It's a 7 hour round trip.  I'm super nervous. I have been a failure at faxing in Callans numbers, and keeping good log books.  Hopefully she will not be to upset at me and understand that we just have a lot going on! 

My husband and I are both not feeling so great.  My body hurts. ALL THE TIME.  Right now my lower back feels like it's on fire!  I have random pains everywhere. I'm sure it's all from stress.  I just want to feel normal again!

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Sunday, March 25, 2012

Happy THIRD Birthday Callan!

6lbs 5oz. 18 1/2" long.
3 years ago today, at 3:55am, I gave birth to the strongest, toughest, most stubborn little boy.  Callan has ALWAYS been stubborn. It's his way or no way.  He's super shy (like his mommy!) but isn't afraid to tell you to get away from him or that he doesn't like you.

My wittle 1 month old baby Callan.

Callans birth was very dramatic.   My husband had gotten a promotion and we were temporarily living in a town 3 hours away from my ob/gyn.  I had been going back and forth just for appointments, which was hard!  About a week before Callan was born I got really really sick .. I didn't even have a voice!  My ob/gyn assured me that it was safe to take Tylenol Cold & Flu while pregnant.

Corbin & Callan.
Well, fast foward a week and some days.  I'm still taking the medicine. I just couldn't get better!  At 11:30pm I started having contractions.  By 2:30am I knew it was really happening.  So my husband rushed me to the hospital.  I don't know if they just weren't paying attention, or really didn't know what they were doing. But my whole birth experience with him was terrible.  They thought that I had not had any prenatal care during my entire pregnancy.  They tried getting records, but no one would call them back from my drs office. (Which is a blessing, because I had signed papers for a tubal!  If they had gotten the papers I wouldn't have a Cason!)
18 months old.

I was getting my spinal for my c-section when the dr walks in.  He said that my blood test had tested positive for meth!!!  (FYI I have never done a drug in my life!)  He started calling me a meth head, and was telling me that he was going to call cps to have my kids taken away because drug addicts don't deserve children. Remember, all of this was going on while a huge needle was going into my back. :/
Callan and big sister Ashlynn.

I was freaking out.  He was so rude, and mean to me, and I didn't understand what was going on!  I kept asking questions during the surgery and he wouldn't even talk to me.  He didn't even show me Callan after he was born!   My husband couldn't come in with me because we had the kids, and no one to watch them. They didn't even update him for an hour and a half after surgery!!  The dr did call cps. They had to search the apartment that we were staying in and found nothing, of course!  So first thing when we left the hospital we both had to go for more accurate drug testing. Needless to say, we passed!  After some googling, I found out that you can have a false positive for methamphetamines while taking cold medicine! 
Ashlynn, Callan, Corbin, & Zackary.
Callan and Corbin.
Top 10 things that I love about Callan:

1. You are so tough. I know you can handle anything.
2. When you randomly say "You're the best mommy ever!" You know how to melt my heart!
3. You secretly deep down love your brothers and sister.

4. The smile on your face when it's time to eat!
5. When I ask you your name and you say "Spiderman Anderson".
6. You are so brave. You have been through so much for a little boy. I am so proud of you!
7. The way you tell Daddy to go to his room if you don't like what he says or does.
8. That you love love love swimming.
9. You are so smart!
10.You have the greatest imagination!
He's so tough!

Mommy sure does love you Mr. Callan Riker!
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