Well this cold weather is kind of messing with us getting back into a normal routine. I was kind of looking forward to Owen starting school again and getting back to our regular weekly schedule but school was canceled today and is canceled tomorrow too but I am enjoying the extra time just hanging out. Today my good friend Katelyn came over in the morning to help with the kids. We had a really nice time both playing with the boys and catching up on life. Special thanks to Katelyn for having the patience to sit with Owen for a good hour at my computer to look at different super hero costumes on Amazon. I have lost interest in this LONG ago and it's ALL Owen wants to do! We got the boys down for naps after lunch (well actually Owen decided not to nap and Jacob decided to nap for only an hour today which made for 7pm bedtimes) and we got to sit and just talk which was so nice and very much needed. Then Katelyn left around 1:30 and I was ON MY OWN with the two boys for I think the first time since everything happened. I was ready, Jamie on the other hand is still pretty freaked out about me being at home. So much so that he left for work today and got all the way to his office in Oconomowoc and realized he left his bag with his computer and all his paperwork at home. He was nervous all afternoon knowing I was home alone and got home as soon as he could but we did just fine. I even had to text to Jamie that I remembered to give Owen his 3pm medicine. Poor Jamie, I don't imagine he has been able to relax much in the last month or so.
Lately I have been feeling really good. In fact the steroids I am on have me running around all day being the most productive I have been in my WHOLE life! Yesterday I took EVERY single piece of Jamie's clothing out of our closet and made him try on every single thing. We now have three huge bags for Goodwill, two huge bags to give away and then I cleaned the whole closet and put everything back in nicely. Today, I emptied out our entire dresser. I think I threw away 50 old t-shirts, went through and got rid of anything old or unused, dusted every inch of every corner of the dresser and put it all away nice and neatly folded. Then I took the two bins that we keep under our bed and completely went through those. Both of those hardly closed and now one is empty and one is half full. It's like I can't stop cleaning! It will be nice though, our house will be SO organized and decluttered, really the only thing I have left to tackle is Owen's closet and I plan on doing that Wednesday while the boys are at daycare. I am happy though, because in a few weeks I will start radiation and from what I have heard, I will be pretty exhausted and just making it through a day without a nap will be a big challenge so it's nice to know I will go into that with a nice, clean organized house.
The doctors were hoping to decrease my steroids today but I have been having some tingling in my left leg every night. It starts around 7pm and is so annoying. It just feels like my whole leg has a slight tickle to it. It makes falling asleep nearly impossible because it's a nagging tickle but also because it makes me scared that my leg is falling asleep again which is how this whole mess started. I talked with a doctor for a long time today and we decided to keep my steroids dose as is until Friday. They said the tickle could very well be anxiety. I would not be surprised. I lay in bed every night questioning if my leg is really even tickling or if it's just my mind playing tricks on me. I also notice that at night my lips feel slightly weak and like my speech feels different and they explained again this could be a sign of anxiety. Anxiety would obviously be a natural thing for me to feel at nighttime considering what I experienced. It made me feel good to know that it's probably just anxiety and NOT my brain swelling again! So they told me for the next few nights to just really relax, practice some deep breathing and see if that helps BUT to also to pay attention to what I am feeling because the tingling COULD also be a sign of a seizure coming on again, but most likely it's not. So relax, breath, think it's anxiety BUT look out for a seizure..... I think the seizure part at the end cancels out the relax part at the beginning. :)
Other than that, things are going really great around here. Jacob seems to have grown up SO much over the last week or so. He is talking SO much more. I swear he has like 10 new words a day. This morning he walked into the kitchen and said "apple" so I started cutting up an apple for him and while I was cutting it he said "bowl, bowl" and got a bowl out and gave it to me to put the apple in. Then I handed him the bowl and he grabbed it and shuffled out of the room saying "thank you, thank you, thank you". We were doing a puzzle and he said "boat, truck, plane" It's like all of a sudden he's like a boy and not a baby. We have his 18 month check up next week. Anxious to see where he falls on the height chart, he's always above 100% and I swear he just grew a TON again! Owen is doing really good too. His cousin Austin borrowed him his Wii system so he has been enjoying playing that when Dad is home. I refuse to get into it, it's boring to me and I am terrible at it. I think Owen is starting to get a little stir crazy, he hasn't been to school in like three weeks so I think he will enjoy getting back into the swing of things.
I am getting nervous for our hospital stay next week. I hope that Owen isn't too scared of everything and that I stay strong while we are there. I am also a little nervous that I will go stir crazy, I won't have anything to clean or organize over there, what will we do all day? :) I hope that we are able to keep Owen on a bit of a schedule and that he sleeps okay at night. For anyone that has spent time at a hospital with a child for more than a day or two, you know how hard it is on the kids. AND Owen will have a million wires super glued to his head and an IV, just makes it extra hard for them to move around, get comfy in bed to sleep, every time they roll over you have to jump up and adjust all the wires, he has to wear a helmet when he gets out of bed since he will be a fall risk. He has done these before but only for 24 max, this will be days. I am sure he will handle it like a champ with a big brave smile like he always does. We check in Tuesday morning and they start to wean his medication and then we just wait for him to have a seizure. It will be weird sitting there HOPING for a seizure. The hope is that the seizure is all stemming from the damaged area in his brain from his stroke in the NICU. If it's all coming from that area, he would be a good candidate for surgery to remove that damaged area of his brain in hopes of eliminating the seizures and the need for all the meds. I guess I really hope it's a clear YES, this would be pretty cut and dry and we should definitely do it or a clear NO, we definitely couldn't do it. I don't want to be left in the gray area of yes we could do it but risk him being set back in his speech, fine and gross motor. So please pray for a clear answer.
I am just starting to plan in my head what needs to be packed, etc. Thankfully we have lots of family to take care of Jacob, poor guy will be without his mom AGAIN for another long period of time. Makes me sad but I know he's just fine. Here is a photo of Owen from his last overnight stay with his cool hat. Hope he's all smiles again this time too.
I told Jamie the other day that I feel like through all this my life became simpler, he literally almost spit out the drink of water he had just put in his mouth. I guess he doesn't feel the same. It's so crazy to say, but I truly feel that way. I know we have some super scary stuff in my future and a lot of unknown but when I sit back and look at everything I feel like everything just got so much simpler, my life is simply about making memories and good times for my kids, loving them from the second they wake up to the second I kiss them good night. All the little stresses in my life that used to bother me, just don't bother me anymore. I feel so empowered, so sure of how I have lived my life up to this point and so confident in how I will continue to live it. I LOVE to celebrate, I throw the biggest birthday parties, we decorate the house for Valentines Day, we make hats for the 4th of July, I am constantly trying to plan and create new traditions and memories because I have always felt that was so important. Life should be a party, every day should be something to celebrate.
I don't want to waste time dwelling on negative or scary stuff that I have no control over. I don't care what my diagnosis is or how much this stupid tumor has shortened my life, I just want to enjoy each and every day and focus on the good, the positive, the millions of things I am so blessed to have. Owen amazing smile, Jacob's laugh, Jamie's strength through this all, the meals that are appearing in the cooler outside our house each day, the texts, email and messages of encouragement I have been receiving. I am so blessed, so lucky. I have watched in awe as Owen has battled for the last five years to overcome so much and now I will battle along side him. We will both fight together with the same positive attitudes, the same big smiles and the same determination to beat whatever obstacles stand in our way!
It's simple, I'VE GOT THIS!