Thursday, May 26, 2011

New Toy... Well, New to Me

When Jesse was born I wanted a new camera. My Sony is awesome and I still love it. But it's still just a fancy point-n-shoot. It gets the job done, but my heart still wanted a DSLR. Shortly after Jesse was born a friend of mine gave me her Canon DSLR to use. It was an awesome gesture.  She told me I could keep it until her teen-age daughter wanted it back. Good deal. So I did. I used it, but didn't really leave the house with it. I took good care of it because I didn't want anything to happen to it because of course, it was not mine. This friend is moving out of state and selling a lot of her stuff. Less to move and earning money to finance the move. I hesitated in saying anything about the camera that I still posessed because I wanted to squeeze every last moment I could with it before I had to give it back.

Last week we were chatting and the camera came up. I actually got nervous. I asked if I could buy it from her and much to my surprise, she said yes! We agreed on a price, which was below my $100 limit. I saved $100 from my Chrismas money (ok that was all of my Christmas money) for just this reason. She told me her daughter never got back into photography and if she changes her mind, they can always pick one up down south because everything is cheaper down there. Yes, anything under $100 is quite the bargain, but it's old and worn, but it works. It has less mega-pixels than my Sony and doesn't shoot video like my Sony, but it can do so much more. I will have more creative freedom and I can use it with studio equipment. Not that I have studio equipment, but one day...

Last night I stopped by and paid her for the camera so it's now officially mine. A small step forward with my photography, but alas, a step forward. Now maybe I will take more pictures. I have the freedom to bring it places and not worry about damaging someone elses property.

Wednesday, May 25, 2011

Disappointment or Opportunity?

Paul had an appointment this morning with his back doctor. He called me after the appointment and he was pretty disturbed. Work comp never approved the steroid injection. This was safe to assume since it was requested a month ago and still hasn't happened. The doctor was bothered by this as well. So the doctor gave him a steroid pack, more pills. He also sent him back to physical therapy, which work comp won't pay for anymore, but doc says, "we'll worry about the bill later". Both of them are upset because someone is sitting behind a desk at the work comp insurance company determining Paul's medical treatments which also means they are determining his future and quality of life. They are going by the book and at 7 months post-op he should no longer need therapy or steroid treatments and should be preparing to go back to work. But Paul's case is not by the book. Paul is not better or in any condition to go back to work.

When he called me all upset I had to do the ol' cup is half full thing. I have to, even if I don't believe it myself all the time. I need to keep him from sinking too low, even though I am following closely behind. He said something along the lines of "summer is almost here and it will be another summer wasted". I told him he can't look at it that way. I told him to look at this as another summer off. Take advantage of your time off and find a hobby, go fishing, get a tan. What I'd give to spend an extra day at home with Jesse or to have some free time to catch up on sleep or relax on the deck. Would I sacrifice my back even if it meant pain on a daily basis? Maybe. But my second thought is that I don't know what it's like. I am not in pain every day. I don't have physical restrictions. I can bend over and tie my shoes, I can pick up my son, he can't.

Monday, May 23, 2011

Taste of Summer

Had a great weekend. Good enough to blog about. We didn't do anything amazing or spectacular. It was a weekend of enjoying the small stuff. My little man is walking now, so that opens the door to new adventures. Paul and I decided to let loose a little Friday night after Jesse went to bed. I made a pitcher of Summer Shandy, Paul grilled and we had a fire, it was nice.

Saturday morning I got up with Jesse, Paul slept in (he was up VERY late). Jesse and I played outside for a bit, ran out for some necessities, then he went down for a nap, a LONG nap. I took advantage and crawled into bed for a bit myself. After we were all napped up, we decided we were going to go to the FREE Taste of BB. The weather was perfect for it. We have never been, but after one of the summer events we went to last year in town, we decided we would hit these things more often. I checked out the event online and for us, it's all about the music. We wanted to wait a bit because the high school's jazz band was playing first and there were 2 rock bands playing after that and we waited so we could just have dinner there. We went over there about 6pm. There were booths set up with food from local establishments and the band was playing in the band shell. We walked around for a bit and eyeballed the food that was offered and the prices. Everything was about $2 or $3, they were small portions (to go along with taste of) but not too small. We watched the band and had our tastes, we went back and forth. We had about 5 or 6 in all. We let Jesse play in the grass a little, he just wanted to pull off his shoes and walk on the paved path, lol. Jesse really enjoyed the music, I think I watched him jam more than I watched the band. We stayed a few hours and left when the sun was going down, it was just about time to get Jesse to bed.

Sunday started like any other Sunday. The weather was warm, giving us another taste of summer. Jesse went down for his mid-day nap and one of Paul's old friends stopped by. After some good conversation and Jesse waking from his nap, it was time to go to a birthday party. A friends daughter's 7th birthday. Jesse did all sorts of discovering. He didn't much care for the jump house, lol.

Once again I failed in the photo department. Yes, the photographer didn't even bust out a camera all weekend. I guess I'd rather enjoy the small stuff and not watch life through a camera lens. Taking pictures for me is like a planned event. A camera is always with me, yet I don't use it. I need to work on that.

Tuesday, May 17, 2011

3 Months Post-Op

We had an appointment this morning with our cleft team. What seemed to be just another routine visit ended up to be anything but routine. A month ago Jesse was evaluated by Early Intervention. I thought it went great, they told us Jesse is not far behind and he's doing quite well for a child who's undergone multiple surgeries with his mouth. They said he's about 10-15% behind, but that's normal for a child who's had palate surgery.

Today Jesse was seen by the Speech Pathologist from our cleft team. She's the one that wanted Jesse to get evaluated by EI. We gave her the reports from EI last week which state they do not recommend speech therapy for Jesse. She did some evaluating today and she disagrees. She thinks Jesse is behind and does need therapy. He's not making sounds that use the front of his mouth. I am not arguing with this. And she makes a good point, the longer he goes untreated, the harder it will be to treat.

I agree with this evaluation. The sounds she thinks he should be making he's not. She wants him to make sounds that use the front of his mouth and he's not doing that, he's making sounds with the back of his mouth. It's not that I think the EI evaluation is wrong, I just think it's different and coming from a different perspective. EI evaluates based on developmental criteria, where the cleft team pathologist evaluates on a medical level. The cleft team pathologist also has more experience with children who have speech issues doe to clefts.

It's just so frustrating that we get this good evaluation then with the blink of an eye it's taken away. But it's been taken away because of his cleft (a physical problem), not because of a developmental problem, which I am thankful for.

Aside from this whole speech drama, we did otherwise have a very good appointment. Our plastic surgeon is happy with his healing and commented on how he's a very happy little boy with a good disposition.

It was also time to meet with the ENT so he could make sure Jesse's ear tubes are still clear and his hearing is ok.  This doctor is also part of the cleft team but at a different office. What a disaster this was! There's always an issue when we have an appointment there. It's not the doctor, he's great, but the office staff and how they run things is just obnoxious. I needed to get back to work, so I sent Paul and Jesse over there on their own. Paul and Jesse arrived shortly after 9am (immediately after our cleft team appointment at the hospital). They waited 45 minutes to be seen. And this is in a waiting room that is not child friendly. There's a play section for children, but there's also many things in the waiting area that children should not play with. One of these things is potted plants. What does a small child want to do with potted plants? They like to grab handfuls of dirt and pull off leaves to put in their mouths. A lot of indoor potted plants are poisonous if consumed. Great idea to sacrifice the safety of children to make your waiting room more aesthetic.

So after a long wait Jesse was seen by the ENT doctor. The tubes look good, no blockage, no fluid. Then back to the waiting room for the hearing test for another hour! By this time, Jesse needs a diaper and something to eat. This office has no place to change a diaper without completely leaving the office and there are signs posted everywhere "no food or drink allowed". So now my child needs to be restrained so he doesn't eat the plants or throw dirt anywhere, he has a wet diaper, he's hungry and it's his nap time. By the time he went for the hearing test he was quite aunery. They had to restart the test 4 times. This is rediculous. If your office cannot be child friendly.... then don't see children. I complained to our cleft team coordinator about this, we'll see if anything changes there.

Friday, May 13, 2011

People Don't Think

So Wednesday I was on facebook and I saw this strange drawing of Lady Gaga with a cleft. Um what?!? I really didn't know what it was. It was published by New York Magazine. So I go to their website and find this: "On May 23, Lady Gaga will release her third album, Born This Way, which the humble star promises will be “the greatest album of this decade” and “something so much deeper than … a fucking meat dress.” Since Gaga is all about transformation and the shock of the new, we asked trendsetting fashion and theatrical designers, illustrators, and cartoonists to try to top said meat dress." There is a slide show and in this slide show is the image I saw on facebook. The artists were paid a commission to reimagine Lady Gaga. When I saw this image again after explanation it literally made my stomach turn. This is the image Mr. Tim Hensley came up with:
Seriously?!? This is his way of topping the meat dress? A birth defect through elective surgery? You've got to be kidding me. Nobody chooses to have a birth defect, and if it's "elective surgery" (as stated on the drawing), then it's certainly not a birth defect. Children have to go through surgery, sometimes multiple surgeries to get this repaired. Not only to correct their appearance so they will be accepted by society, but also for functionality. Does he realize that children with clefts have feeding, speech, nasal, dental and hearing problems? I don't know what this guy was thinking! Being born with a cleft is no joke, but I guess this guy thinks it is. I'm really not to sure... like was this meant to be funny? Well, it certainly didn't work, what he succeeded at was pissing a lot of people off! The cleft community is protesting. They started by posting their objections on the New York Magazine facebook page then it started on the New Your Magazine Website. Not sure when it happened, but between the time I logged off Wednesday afternoon until this yesterday morning, New York Magazine deleted all of our comments and published this statement: Note: After consulting with the artist Tim Hensley we've decided to take down his drawing and he is donating his fee to a cleft palate charity. We offer our sincere apologies to the community.

Seems to me like this is just their way of shutting us up. I hope the apology really is sincere. I know some cleft organizations have been notified of it, including Smile Train, AmeriFace and Children's Craniofacial Association. There's even a Protest New York Magazine facebook page. Some cleft Moms I know have been contacting CNN, Fox News and their local news tv and radio stations. It was aired in Atlanta, you can watch here. I don't have that much time on my hands, but I do have the time to blog about it and spread some awareness.

Tuesday, May 10, 2011

Mother's Day

So this year I couldn't really decide what I wanted to do for Mother's Day. The zoo? The park? Nothing? Hang out with my sister? The zoo idea I posted on facebook a week or two prior. Some people replied and said things like "pure insanity" and "tried that once, it was a disaster"... stuff like that. So at that point I just dismissed this as an idea for Mother's Day. A few days before Mother's Day I come home and Paul tells me his family is going to the zoo for Mother's Day. I guess someone saw the idea on my facebook but didn't see the comments to follow. What?!? Are they crazy? The initial shock factor subsided and I decide, ok if I don't go, I will look like an ass to his family. Because you know, this was my idea. Also, if I don't come up with something else then what? I'll be sitting at home doing chores like any other Sunday. I do have a zoo membership, so what the hell. Why not? We'll go and if it's crazy and we are miserable, we just leave and go to a park and enjoy the beautiful weather.

So Sunday morning came, I spent an extra 1/2 hour in bed than I intended, but it was worth it. I am one of the lucky mothers who's baby sleeps until 8am (as opposed to 5, 6 or 7am). This day he slept til 8:30. I was going to get up before him to get started on preparations, but as I sat up, Paul tells me, "Just stay", so I did.

We got up, got showered, started packing the diaper bag, the lunch cooler, feed Jesse, load the car and miraculously we were out the door by 9:45. The goal was 9:30, but 9:45 is not bad at all. Made a quick breakfast drive-thru stop and we were off. Paul's family was meeting there at 10:30 and we actually made it on time! That's rare for us.

The day was nice, the weather was perfect. Yes, it was crowded, but not much more than any other Saturday or Sunday. It was a good day. Jesse liked the fish in the Living Coast the best. He'd watch and point. "s that?" That's baby for "What's that?" He also loves watching the birds in the free flight areas. At the end of the day my Mother in Law got him a ticket for the Carousel. He loved it! No pictures. :( The camera was acting up.

We got home in the late afternoon. We took the long way home. The highway was backed up, the weather was beautiful and Jesse sleeps well in the car. When we got back to town we stopped at the grocery store and Paul picked up the fixin's for one of my favorite meals, Grilled Greek Chicken Pitas. So for the remained of the eveing we hung out on the deck and in the yard and smelled those wonderful grill smells.

I will remember this Mother's Day for a long time.

Tuesday, May 3, 2011

Spring has not Sprung

I have been pretty depressed lately. Mostly due to the stresses of my life. Being a mother and not having much help from my husband, dealing with his medical drama and his depression from it. Worrying about being judged because I have a child with a cleft. Worrying about money and how we are going to get the bills paid, food on the table and still have some left over to do something fun. Worrying about my childs daycare. Worrying about my son's eating and drinking issues. The list goes on. I started to try and seek help. I have very specific needs, plus time and money are huge factors. All leads sent me to dead ends. I chose to focus my negetive energy on being an educator and advocate in the cleft community and beyond. I chose to share Jesse's story with those who may not know about clefts and what we have been through. That in itself was a huge weight off my shoulders. I had a talk with a dear friend who listened like I needed her to, that was also huge. She helped me to understand the outside perspective a little bit better. She also stressed about how important it is for me to get some me time. That won't be easy, but she's right. That in itself will be theraputic.

The weather here in the Midwest just sucks this year. Here we are, it's May and it's STILL cold! We've had some good days here and there, but it's just not Spring yet. I am sure this has an effect on people's attitudes. I want to do more, live life more, but it's hard to do free outdoor activities when it's so crappy outside. I have a friend who recently moved to Texas. She mentioned, "People down here are so nice, I think it's the sun." I think she's right. There are higher depression and suicide rates in places that don't get a lot of sun.

There's not much I can do about Paul's medical situation, it is what it is. But I will make more of an effort to make the best out of things. Now if the weather would just cooperate, this would be easier. I want to take evening walks. Hang out on the deck. Play some basketball in the driveway. Play with my son in the yard. Go for a hike in the woods. Go on a bike ride. Either I need to learn to do these things in bogus weather or I need to move to a warmer climate. That's a whole other blog though.

We have a walk planned tonight, I am looking forward to it.

Here's a couple cute pictures of Jesse from Easter Weekend.