Sunday, January 12, 2014

Getting ready for a very busy week!

Wow, just finished typing up my email to my family for this coming week with our schedule.  It's insanely busy.  Between Owen being admitted Tuesday, my appointments for all my stuff and coordinating child care for Jacob for a full week with different family members every day I will have my work cut out for me tomorrow.  Packing up a week's worth of clothes for Owen and I at the hospital, packing stuff for Jacob and having instructions ready for whoever is watching him on any given day, making sure everyone knows Jacob's daily schedule, naptime and bedtime routine.  I am not a "oh here's my kid just keep him alive" type of mom.  I am a "here's my crazy 18 month old child, and here is his exact schedule, the foods he likes, the way he likes me have his lullabye music turned to volume number 19 on his Cd player for bedtime, here are his favorite sippy cups, and on and on and on".  Yes I KNOW he will be fine if things are different but I get so much ANXIETY over it.  I know someone is going to text me a photo of him playing and having so much fun and I will totally see that he is wearing 18 month pants that are too short that I would never put on him and then think to myself "why did I still have those pants in his drawer".  Tell me I am not the only mom out there that thinks these crazy ways.  And even though I will be at Children's all week with Owen and walking over to Froedert to get all my stuff prepped for radiation I will still have time to worry and stress about every detail of Jacob's day.  Deep breath Alison, DEEP breath!  Jacob will be just fine, your family will take amazing care of him and he will be the same old Jacob when you get back home to him, obsessing over his trains and nuks and throwing fits whenever he wants just because he can.



So Owen has actually been really off the last few nights.  We have actually been worried the last few nights that he was going to have a seizure.  He is just really groggy, his eyes are trailing behind when he turns his head, his speech is REALLY slow and hard to understand at night, he has been sleeping really restlessly.  So we are somewhat excited to get him hooked up the EEG to see what is going on with all this weird behavior at night.  Is it just his medicine and him being tired or is he having abnormal spikes on his EEG.  Also, hoping the fact that we have felt he was close to having a seizure these last few days might mean that when they start weaning him off his meds on Tuesday that he has a seizure within a day or two so we aren't stuck at Children's for 5 or 6 days waiting for one.  It will be very strange to be HOPING for a seizure, that is for sure.  It will also be weird if it happens while Jamie is at work.  Somehow it has always worked out that Jamie and I have always been present for every one of Owen's seizures.  Hoping that is the case this time too.  I know we will be at the hospital and will have lots of doctors and nurses available but for Owen's sake I hope that his mom AND dad are there for him.  Seizures are scary (i now know this first hand) and I hope that he has the support from both of us and both our hands to hold while it happens.

I also hope that Owen isn't scared.  He has had two other 24 hour EEGs in the hospital but he was younger AND Owen has definitely picked up on the fact that something is going on with mommy and he knows I have a big boo boo on my head so I hope this doesn't scare him that now he will be hooked up to all the leads on HIS head.  Jamie and I have always taken a very laid back approach with all his medical stuff and will continue that with this stay.  He has no idea that he is being admitted on Tuesday.  Every time we pull up to Children's he always asks right away if he has to get a shot and we always have to answer him, sometimes it's yes, sometimes it's no.  Well he will have an IV in the whole time he is there so we will have to tell him yes but we are going to try to pump him up.  Our plan is to tell him that we are actually having a slumber party and that it's just Owen, Mommy and Daddy and we get to check into our own room and we get to have a private slumber party and play games and watch movies and just hang out just the three of us.  We will be stocked with all sorts of fun gifts and busy bags that have been donated to us so generously by so many people.  My little sister mailed him a fleece Avenger blanket that he is going to LOVE!  I plan on wrapping that tomorrow and then giving it him to open while they are putting all the leads on his head, it's not the most fun process to sit there as they glue everything to your head so we plan on letting him open some presents.  Then we are just going to make it as fun as we can.  We are ordering Chinese food Tuesday night for dinner, Owen's FAVORITE!  Then we will have a movie and popcorn party that night.  Owen is SO brave and I know he will do great.  He has overcome so much in his life and been so brave through some pretty scary times and I know this will be no different.

Here is my brave little fighter!  Praying for a quick hospital stay, positive results from this monitoring and hope that Owen is a good candidate for surgery to eliminate his seizures and the need for medicine three times a day.  I love this kid more than I could ever write or express through words.  He is absolutely the most amazing, inspiring, positive and determined person I have ever know and he is FIVE years old!!!!!

So a long week ahead of us.  I am NOT looking forward to all my stuff on Wednesday.  Wondering what it will feel like to be back in the cat scan machine and laying on a table having a mask molded to my face.  Blah, who cares, I will just think of Owen and getting back to him over at Children's!  Plus I will have my good friend Christen with me at Froedert to help keep me company and keep me on happy thoughts.  No pressure Christen.  :)  And be prepared for my awkward jokes, i make terrible awkward jokes when I get nervous, so be ready for that.  

Off to switch the laundry (have to make sure Owen's favorite Spiderman pjs were all washed up and ready to pack!) and then I am jumping in bed.  Already have my heated blanket cranked to HIGH.  Man, I LOVE my heated blanket!

Thanks for all the love, night everyone!



In case you needed a dose of cuteness before you go to bed... here is Piper!  

Oh man I can't wait to snuggle this sweet pea!  Look how full her face is already?  She doesn't even look like a newborn anymore!  Anyone else want to squeeze and kiss those cheeks?  Love her!!

 

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