Thankful & Emotional

I'm emotional today. Not sure if it's hormones or lack of sleep. Last night Jesse woke up several times. I know I should ignore him so he doesn't think that every time he makes a peep, I will come rushing in. I went into his room a few times last night. Honestly, I just wanted him to stop so I could sleep. I knew nothing was terribly wrong, because he was just whining and moaning, literally. I don't know what the cause is. Maybe overstimulation or overtired. If I go in to check on him, he's barely even awake. Sometimes his eyes aren't even open.

This time, I rough night turned into a rough morning. I got up, a few minutes later from my normal time. I got showered and dressed like always and went in to wake Jesse up. He was not having it. He said, "Still dark out," which is what I tell him when he wakes in the middle of the night and I want him to go back to sleep. Turning my tricks back around on me. He clearly wants to go back to sleep, so did I. Paul heard the commotion and came in. Paul doesn't mess around. He entered the fight knowing it would be a fight all the way to the car, which it was. A fight to put clothes on, to put shoes and socks on, to put a coat on and to get in the car. Once we were in the car and headed to daycare, I saw something.... me. I was staring back at my childhood self back there who couldn't catch his breath because he had gotten so worked up. I remember doing this to myself too. Maybe not at his young age, but I do in fact remember this. Is being strong-willed genetic? Or am I raising my son (who happens to be like me) in the same way my mother raised me, and in turn, getting the same results? Oh yes, I could be reading into this way too much. It happens, especially when I am emotional.

Money has been weighing heavily on my mind too. But I don't want to bore anyone with my money problems. Seems like everyone has money issues to some extent now days.

Paul and I got iPhones. It's totally changed how I utilize the internet. Plus I have a new found love for phone cameras. I can't afford the DSLR I want, so I might as well take advantage of the cool iPhone camera. You may say, "Wait a minute, if you are having money problems, why and how did you get an iPhone?" I have asked this in my head about others who have iPhones yet claim to be broke. Well, we were due for phone upgrades and much to my surprise, they were FREE! I didn't even think that was possible. Plus, with our carriers new Talk, Text and Data packages, we were able to get a data plan that fit in our budget. I think Instagram is my new favorite thing.

The only problem is that Jesse wants to play with my phone every time I have it out. That puts a slight damper on taking photos of him. I have to be sneaky.

Thanksgiving is this week. Short office week (with regular week pay, yay!)
People have been posting on facebook a daily thing they are thankful for. I am thankful for a lot, but I don't feel the need to make a daily post about it. I have a generic one, that covers a lot of bases. I am thankful for where we are due to the obstacles we've had to overcome. It's been a rough couple of years, this one being the hardest financially. But we are still here. Still have a roof over our heads, cars, electricity, heat and food.

We are going to my aunt's for dinner to spend the holiday with my Dad's family. Last year we did the holiday with Paul's family and we alternate. This one will be different. My parents are moving to Alabama in February. Sure they say they will be back for the holidays, but who knows if they will have the money to do that year after year. This one could possibly be the last one where we are all together. So that's another thing I am thankful for, my parents being here to spend this holiday with.

Happy Turkey Day!

Traditions

Halloween came and went. It was a fun one. Jesse "gets it" this year. Last year he was completely clueless. Heck, last year he didn't even know what candy was! We did our annual traditions, decorated the house, watched scary movies (without Jesse of course), carved pumpkins on Halloween Eve, roasted seeds, dressed up and passed out candy and stickers.

The Friday after Halloween was Tim & Jen's wedding, Paul's brother. It was a blast. Not until the next day when I was looking at pictures did I realize there were no pictures of me! I even liked the way I looked. I got a ton of fabulous pictures of the bride and groom and one strip of Paul and I from the photo booth.

Paul can't resist the boob grab.

It was a beautiful wedding and a fun reception, with good food too. Glad we could be a part of their day!

Now the holidays are coming. I am usually very excited, but this year is going to be different. My parents sold their condo and are moving to Alabama in February . They are currently living with my Aunt (Dad's sister) through the holidays. Things are changing again and I am sad, but accepting of the change. They told us this was their plan last year at Thanksgiving, so I have had time to prepare.

When we were kids Christmas was always at my house. Our house was decorated, we had a real tree, we baked cookies, and lots of them. Dinner was always a huge spread. Roasts, dumplings, veggies, gravy, potatoes.... protein and carbs a plenty. Christmas at our house was a huge ordeal. I don't even know how my Mother did it, but I respect her even more now because I wouldn't know how to pull of something she made look so simple. Everyone came. Aunts, uncles, cousins, Grandparents.... there were a lot of us, my Dad came from a family with 7 kids. My relatives would joke, be loud, be "merry". My uncle would read "T'was the Night Before Christmas" in his best story reading Irish accent and all of us kids would gather on the carpet in front of him. It was magical.

When my parents sold the house, our Christmas traditions were gone too. We started new traditions, our family was growing and things needed to change. My sister and I gained husbands, so therefor we needed to accomodate other families, so we switched our Christmas Day to Christmas Eve with just us, immediate family. It was held at my parents condo. It was quiet and quaint and kind of nice. Mom and Dad would make a fancy dinner and open gifts. Not much changed since we had kids. I liked this. It wasn't a big ordeal like it used to be, but that was ok.
Now Mom and Dad won't be hosting and the Christmas torch has been passed on to my sister and I. It's time to start our own traditions with our own families. I am a little sad, but a little excited too. I don't want to plan new traditions, I hope they just start developing out of what's already in our hearts.

Inspiration

What an inspiring week it's been. Last week I was asked to write an article about my experiences with my son in relation to beauty for a friends Alternative Modeling site. I really enjoyed writing this piece.
http://deadbabes.org/beauty-is-in-the-eye-of-the-beholder/


Then Sunday we had our 2nd Annual AmeriFace Family Fun Fest. Another low turn out this year, but it was still an amazing event. I met 2 more families I have networked with online. We all live in different parts of Illinois, so we met at a Pumpkin Farm in DeKalb. I was dreading the drive there, but in retrospect, it wasn't that bad and not as far as I thought. There were 4 families, plus Robin, our area Coordinator. All 4 families have boys and all the boys are 2, all born within a few months of each other. Here's the group picture we attempted. It cracks me up, but it's the image of an amazing experience.  

Sometimes it's the Small Things

*Update*
Work comp paychecks started coming, so one less stress on our plate.

On clear nights, before bed, I take Jesse outside to see the moon. He loves to find it in the night sky, then look at it for a few minutes. I took him out one night last week to do just this. He wanted to lay down on the driveway to look at the moon and the sky. He pointed at the stars, then started grabbing into the sky and says, "Get it Mommy". Priceless.

Time Will Tell

Today I re-installed Internet Explorer, and looky here, I can blog again. I wonder why I didn't think of this sooner.

Updates:

Work comp denied Paul for the Spinal Cord Stimulator. I am not surprised, after all, it is a $100,000 surgery. Something needs to happen though. His pain has gotten dramatically worse in the past few weeks. He's been missing days of work, therefor our already low income went down even more. The doctor prescribed him a new medication that could help his pain, Exalgo. I guess it's new and doesn't have a generic form. Denied. It was a synthetic, time-released version of Morphine. This may just be a good thing. I can't imagine starting something like this in your 30's could end up a good thing. So it was back to the drawing board. The pain doctor requires patients to come into the office for meds, so an appointment was made and I decided to take this opportunity to go with and voice my concerns to the doctor.

The appointment was this week. I got someone to watch Jesse and we went. I prepared for the appointment, having my concerns ready, have a defense prepared and bringing proof of the amount of pain my husband is in. The topic came up about taking Paul off work, the doctor asked if we were sure this is something we want to move forward with and we both confirmed. It's obviously the best thing for him. The commute itself was putting him in pain, the pain and his work situation was giving him stress, the stress aggrivates the pain more and it gets worse and turning into a never ending cycle. He was down to 25 hours a week and we could barely even live on that. Something had to change, so the change is now made. The doctor wrote a note that states, "Off work until further notice."

Now the scary part. Waiting to see if work comp will resume disability payments. Of course I spoke with the attorney and he feels Paul is entitled to these benefits and has stated he will fight to get them. So we wait. It's scary. I only work part time (not by choice) and we cannot survive on just my salary. I have already started thinking of back up plans. In the mean time I have requested extra hours at my office and at the restaurant I have been working at. If I need to, I will start looking for a new full time job.

Yes, this is a risk, but we had to do what was right for Paul and right for our family. This can possibly help work comp approve the stimulator and/or any future treatments. We believe he was denied because he was working. If this guy can work, he must not need a stimulator THAT bad. WRONG! He's been working in extreme pain, just so he could be a provider for his family. He's been suffering and it needed to stop. Time will tell where this leads us on this journey, hopefully it's a path to something good.

It's Been a While

Where have I been? I have not been able to post for almost 6 months now. For some reason I cannot log in to this account from my office computer, so right now I am on another computer in the office. I also usually blog in my down time at work and since my hours got cut, I have not had much down time either.
I've had a lot on my mind lately, so I decided I'd find a way to blog. So here I am. A lot has happened in the past 6 months. Like I said, I am part time at my office now. I think this is actually a blessing for me, except for the financial part. Luckily I was able to pick up some hours at a restaurant close to my house. It doesn't make up for all the income I lost, but it's better than nothing. I am working evenings, so I was able to cut back on daycare and the best part, I get to spend more time with my son, which I've always wanted since I went back to work after he was born. I didn't want it to happen this way, but I got it and I love every second of my time with him.
Since my last blog we had a surgery anniversary. In February (the 16th to be exact) was the one year anniversary of Jesse's palate surgery. In March we had his one year speech evaluation, his 2 year cleft team appointment, his 2nd birthday and his 2 year pediatrician appointment. He's doing great. No major problems and he seems to be on track with his growth and development.

Paul is still in a lot of pain for his back and nerves. He's been working and in a lot of pain from it. His surgeon sent him to a pain center. The first one didn't work out and now he's at a different one. He's a candidate for a spinal cord stimulator, so we are waiting for work comp to approve it. If he's able to get it, and it works for him, his pain may decrease up to 50% and can hopefully reduce the amount of meds he takes. Below is a picture of what it is. It's implanted under the skin. The electrodes will block his nerves from sending pain signals to his brain. This of course means another surgery, but if it gives him relief, I'm all for it.

Now for what's on my mind today. I recently discovered that Jesse's hard palate is very high. He was on track with his speech, but lately I have my doubts. We've reached the point again where he's saying something and I can't understand him. This leads to frustration for him and me. He will repeat himself even, but I still don't understand. I am not sure if he's speaking in jargon, or actually speaking words, improperly. I read blogs and facebook posts and see what "normal" kids are saying and I can't help but compare and see that Jesse is not even close to them. He has a good vocabulary, but he can't speak a full sentence yet. I'm told that kids are all different in their speech development and soon he will get there, but I feel terrible when my child is trying to communicate with me and I don't know what he's saying. It breaks my heart. Since the high palate is a new discovery, I wonder if this is what's causing a delay in his speech development. I will need to bring this up at his next team appointment. In the mean time, we might increase his amount of therapy and try and work on his annunciation (I think that's the right word).

I am a bit taken back by the fact that no one has mentioned his high palate (or vault, I think they call it) and I was left to discover it on my own. Certainly this is something the plastic surgeon would have seen when she repaired his soft palate. My first hint was when we went to the dentist and he mentioned Jesse may need a palate expander at some point. Hmmm... this was also never mentioned to me by the PS. The dentist mentioned his repair looked great, so on my own time, I was peeking inside his mouth and saw the roof of his mouth and put two and two together. That is why he may need a palate expander. If he does need one, it won't be for several years. The dentist told us to come back in 6 months for a check up and cleaning and we'll revisit the palate expander possibility when he's closer to age 7. At least the word surgery has not come up again.

Now, it's mid-June. I work part time and I have 2 more days to spend with my kid so we have been taking advantage of that since I have no idea how long this will last. We've been having play dates with friends and family. We've been up to the lake once and have another trip planned this weekend. We play outside in the water and go to parks. It's fun. He's at a fun age and I am reaping the benefits. I also get to be a kid again and we have so much fun together. Of course there are days when he's a typical 2 year old where he refuses to nap, put clothes on or thows a tantrum, but the good times make me forget about those days. Here's to summer and enjoying every second of it!

I just have to say

Yes, I am aware that many of my posts are negetive. I try and throw a happy one in every now and then. But the fact remains, I am going through a lot of shitty things in my life and this is where I vent so I don't go insane. Not sure if anyone even reads this anyway.
The weekend is almost here and I am so looking forward to not thinking about my problems for a few days. That's all.