At least I have this little man...

.... who brings a smile to my face every day.

Today is his 5 month birthday.

Going downhill

Our bad situations have gotten worse. Paul's no longer getting work comp benefits, which means he's not getting a paycheck. Theoretically he could go back to work... but both his doctor and lawyer don't recommend it. He's physically not able, plus it can be used against him in the case making his employer think he's able to work, even though he would be in mass amounts of pain. We have no money. None. We are down to our last dollars. The mortgage is paid, most of the bills are paid, but there's also no money coming in except for my measly income, which just doesn't cut it, not even close. I am looking for another job, but I don't think it will make much difference. Nothing I can do part time will make enough to cover Paul's income. We don't even have anything to sell, not even our house. We owe more than it's worth due to the economy.

There's a hearing on September 7th. That's a week from Tuesday. If it goes in our favor, we may be able to recover. That's over a week away. We have groceries, the mortgage is paid and I have food and diapers for Jesse. Those are the most important things.

I see a laughing child

So I wanted to talk about this amazing woman in my life, my Aunt Carrie. Not until recently did I really bond with her. Not that anything was wrong with our relationship before, but something changed when I became a mother. She was one of the first people in my extended family to come over and meet Jesse. I will never forget what she said to me that day. She told me God gave us Jesse because he knew we could handle it. She went on a little about how Paul and I as older parents could handle Jesse having a cleft, that younger parents would probably have a really hard time. I am not as religious as her, but I have the utmost respect for her and her beliefs. She's probably right, I do believe that everything happens for a reason and we were given Jesse for a reason.... the gift


So here's the scoop on Aunt Carrie. She's the youngest of 7 kids, my Dad's baby sister. My Dad has her beat by 15 years. She's only 13 years older than me. My Dad's younger siblings are almost like older siblings to me. My Grandmother (her Mother) passed away when she was only 15 or 16. I was Aunt Carrie's flower girl in her wedding. She married young, maybe 20 years old? She's married to a Downers Grove cop and she's a Florist at heart, not currently a Florist for a living, I am sure she wishes she was. She did all the flower arrangements for almost every family wedding and major function including my wedding reception, aside from being gifted in other ways, she's a very gifted Florist. She had twin boys when she was 24. Kyle and Jacob, also 2 very amazing people, I must say. 5 years later she had a baby girl, Hallie, who is growing up to be another amazing person in this family.


I call her SuperMom. She must have been born with this gift or something. I don't know. Since I became a mother (and even a few times before Jesse was born) and I feel like I can ask her anything and talk to her for hours. She gives me her advise and opinions but lets me make my own decisions. My sister is on her way to becoming a SuperMom too....


She has babysat for us a few times. She loves having a baby to take care of. She came over yesterday to give Paul a break. The two of them ended up talking half the afternoon and she stayed another hour and a half after I got home too. She's just so easy to talk to.


So today I send a picture out to a few friends and family. Jesse was laughing last night and I snapped a picture where you can see his cleft palate. I said in the email that this is what a cleft soft palate looks like.





Her reply, "Funny, I see a laughing child. Thanks for letting me be with Jesse yesterday, it was fun."


THAT is what makes her special and I love her for that.

Just One

I took this picture the other day and fell in love with it. I just grabbed the camera and got this shot, the only shot, before the camera battery died. I usually taken dozens and pick one or two that I really like... this time, just one.

Inspiration

I was directed to a birth story this week. I had actually already read it. The first time it made me cry. The second time it made me cry. I can relate to this woman's feelings in the delivery room when things don't end up as you expected. But after all is said and done, you love the result... the child that is born to us. Quite possibly even love them that much more. Realize they are a special gift to you. The child was given to you for a reason. Her blog is called "Enjoying the Small Things" and it inspires me to do just that. Not that I didn't already. Every time my little boy looks at me and smiles it warms my heart, but I want to enjoy him even more. I want to pick up the camera and create beautifaul images with him and of him, document it for myself, for him, for his Daddy and for whoever else that cares to see.

music...

I think Jesse needs a theme song, something acoustic and inspiring.

I will need to go through my library.

And the shit hits the fan once again

This one is a Paul update. Monday afternoon Paul gets a call from our attorney. He got the IME Report (Independent Medical Evaluation). This doctor, who only saw Paul for a few minutes, decided Paul needs a more extensive decompression surgery (the microdiscectomy that Paul had back in January) and is able to go back to work. So of course work comp is siding with this doctor and Paul has been cut off from WC benefits (meaning his paycheck) as of Monday. He will only get paid if he goes to work, then benefits will resume once he has the decompression surgery. Lovely. Paul's has been in more pain than ever in these past 2 weeks.

So the attorney advises him to call his employer to confirm they have a light duty position available for him where he can stand up every 30-40 minutes. They do. He can come in and be the receptionist in Carol Stream. Mind you Carol Stream is over 25 miles away. In rush hour traffic it will take him at least an hour to get there. That in itself is against doctors orders. Then he's on pain medication (Norco 750mg, 2 every 4 hours). So if he drives on this medication, that's driving under the influence of a narcotic. Then he has to work. One of the warnings of Norco is not to do any activities that require him to be awake and alert. I do believe that driving and being a receptionist both require him to be awake and alert. He's not supposed to bend either, I do believe that when he passes out on the desk from the 2 Norco pills that violates doctors orders too, bending and sitting. I have explained all this to the attorney, I guess it doesn't matter to WC. Theoretically he can stop on his commute, take a taxi or not take the medications. As if that is reasonable.

So Paul saw his surgeon today. He recommends a double bone fusion for Paul and is very confident it will make Paul pain free and resolve the problem. Dr. K REFUSES to do the decompression surgery again, because to him it is pointless and it will actually make Paul's back unstable. Then Paul will just need the fusion anyway. Dr. K is sending a letter to WC explaining all this and gave Paul a Work Status Report stating he should not be working at all. So one would think WC would rather pay for 1 surgery rather than 2. But I think we know now they do not think logically. They just look at the immediate cost.

So then aside from what Dr. K thinks, the IME Report has so many inconsistancies. First of all, it states 2 MRI's done in 5/2001. Paul did not have any MRI's in 2001. He's never had any MRI's prior to this injury. Then he states that Paul denies any back pain. That's bullshit. Paul has contant back pain in addition to the nerve pain down his leg and sure as hell didn't"deny" it. Later in the report this doctor stated that Paul had mild back pain. Wait, is it no pain or mild pain? NEITHER! It's a lot of pain! Then the doctor states Paul rated his pain 6/10. Paul recalls telling this doctor he was an 8-9/10. Oh and after waiting over 3 hours in the waiting room to see this doctor he gave Paul about an 8 minute exam. Of course he was in severe pain, he had been sitting in a waiting room for 3+ hours. And this doctor must know what's right for Paul from his 8 minutes and Dr. K must know nothing after treating him every 3 weeks for the past year. So now we fight. Awesome.

Jesse Update

So yesterday we went for a follow up appointment with Jesse's plastic surgeon. First the weigh in: 14lbs 14oz. When we went to the Pediatrician 2 weeks ago he was 13lbs 8oz, so basically a pound and a half in 2 weeks! And the PS weighs w/out a diaper and the Pedi does it with a clean diaper. Crazy. I guess the cereal is helping with his weight gain!

The PS said he is healing nicely and we can start massaging the scar tissue. This will make the scar tissue softer so it won't be as noticable.

I asked about the palate surgery and she said after the new year but before his birthday. I can't imagine she would do it RIGHT before his birthday so I imagine that will happen in January or February, which is good for me since I will get my vacation days with the new year.

The cereal went good for the first 3 days, then didn't go so well. Part of the reason was because Paul's parents watched him on Friday night and Saturday, so his eating pattern got disrupted. So I tried getting back on track Sunday and Monday but he wasn't taking it. Monday I think he was just too hungry and wanted instant gratification, which cereal off a spoon wasn't giving him. He wouldn't take it so I ended up just throwing it in the bottle. My doc doesn't recommend it, but hell, people have been doing it for years and it beats feeding him 12oz.

So yesterday he took a couple bites of cereal with no trouble then all of a sudden wasn't interested. So I grabbed the Gerber bananas and mixed them in. Low and behold, he liked the cereal again. I was told I could introduce applesauce and bananas after a couple days of plain cereal. So be it.

Cereal

So I made cereal again last night, but this time I made it thicker. Jesse loved it and ate like a champ! I made 1tbsp with some formula, he ate it all so I had to make another batch and he ate that too and chased it with 5oz of formula. He had another 4oz bottle before bed, went down about 9:30 without a fight and slept through the night until about 6:30. Perfect!

Maybe I need more sleep

I've had an emotional day. Things around me sometimes make me think too much. It happened today. I have been teary almost all day. Someone I know had a baby. I am happy for them, but it also makes me remember that day in my life. A day that's supposed to be full of happiness and bliss wasn't for me. I was happy the day my son was born (after all the labor of course), but there were also a ton of other emotions going on that day. So much was going on in my head that I don't even know what I was feeling, I cried whenever I had some privacy, I didn't want anyone to know I was crying. When I started feeling this today, I reached out, to my friends and soon realized no one really understands.
So I contacted Bethany. Bethany is a mother I met on BabyCenter.com. She was in the April Birth Club with me, then in the Cleft group. Her little girl was born a few days after Jesse. Bethany was also unaware she would have a child born with a cleft. Ava's lip was more severe than Jesse's but she doesn't have a cleft palate like Jesse does. Jesse and Ava also had their lip surgeries the same day. So I talked to Bethany about my feelings and she told me she goes through the same thing. Thank God I am not alone. I was starting to feel selfish. I was told I need to get over it. I am happy that Jesse's lip and palate can be repaired, but there's more to it than that. He will most likely be effected by this most of his life, which breaks my heart. The fact that he has to have 2 surgeries in the first year of his life, also breaks my heart. Yes, it could have been worse, he could have been born with a more severe birth defect, a disease or some kind of syndrome, so I am thankful it's something that is somewhat minor. It also messes up my feelings about another child. I wonder if I got lucky the first time and I am just pressing my luck having another. Well, it's not like another child is something that would happen anytime soon anyway.

The name Jesse means Gift, and that's exactly what he is, my gift that I was lucky to get.

If at first you don't succeed

Well, I failed yesterday. I ate fast food. Not much of it, but indeed I had it for lunch. I needed something fast and cheap. All I can do is climb back on the horse and try again.

We attempted spoon feeding Jesse cereal last night. Not a total success, but not a failure either. I think I made it too runny, but I did what the package said. When he got frustrated I ended up just putting the remaining in the bottle. I will try again tonight, a little thicker. Paul took pictures but have not uploaded them yet.