Monday, June 28, 2010

La de da la de da

Missed work all weekend. Jacob came home yesterday afternoon. He is doing great. The peg tube site looks wonderful. I'm adjusting to him having a huge tube hanging from his abdomen. Doesn't seem to hurt hims so much anymore. He went all day today without having any tube feedings. A few hours ago, I gave him his meds via his peg tube and when I went to feed him he gagged and vomited up all the meds. I don't quite know what I did wrong, but maybe I should have fed him 1st. Oh well he is fine. He did only eat 4oz instead of the 8 he is suppose to, but I was not going to force feed him the other 4 when he just vomited all over me.

Andrew is almost mobile. The kid can't sit up totally unassisted, but he get his butt up in the air and crawls 3 or 4 scoots  to get what he wants out of his reach. He has mastered picking up food and bring it to his mouth. I am so proud of him. He has also been on sippy cup only for a week or more now. He is getting so big.

Ava is still readjusting from mommy and daddy being gone all week. She is being super attached and wanting to "help" all the time. I love her.

I am sick as a dog! Ugh I hate that I get my "face herpes" cold sores. YUCK! My face is so sore and painful. Every time I have an outbreak it gets worse than the last. When I was a kid it would be the typical sore at the corner of your mouth, but for some reason in the pasted 3 years or so they cover my moth and left side of my nose. They come up in the same exact spots every time, but seem a little bigger. They start at the right side of my mouth and chin, go all the way across my bottom lip, onto my to left side of my lip, then under my nose and up the left nostril. Oh, and they are not only on the outside, they are on the inside of my nose, the in side part of my lips, and starting to spread to my right nostril now. I am going to make sure I have a stock supply of antiviral meds from now on. I had 4 outbreaks of this nasty within a few months last year around the same time because of the babies being born and all the stress to go with it. I can only assume this outbreak is from the stress of Jacob's surgery and hospital stay. Now I suffer. My face has burning pain all the time. I can't even blow my left side of my nose it is so swollen. My face is covered in green/yellow crusty grossness. I look like I do meth or something. Noting is touching this pain! Oh and to go with the face pain. All my teeth throb on the top. The glands in my neck are swollen. It is painful to touch my neck or turn my head. I feel like my sinuses are clogged. I have that pressure feeling like you have a sinus infection and eyes burn and throb. I think that about sums it up for my complaining for this issue.

Only one more vent to go....As most people that know me knows that my husband is not the king of positiveness. He is more like the supreme rulers of negativity. I can't count how many times today he stated that his life is Hell. I can count 3 different times today he referred to Jacob as "our half dead son." Among other assanign hurtful things he says. Sadly I don't think he realizes how bad it hurt me for him to say these things. He had to cancel his psychologist appt this passed Friday if I did not mention this before due to Jacob being in the hospital, so who knows when he will have a new appointment. I feel him pulling me down. I need a partner who will uplift me when I feel down. Not one to step on me while I pout in self pity and push me down farther. I've tried to uplift him, but the more hurtful things he says is pulling us further and farther apart. I don't think he even realizes what the heck he is saying and the weight is bears on my shoulders. Does he not realize that I lost my son to? That Jacob is my special needs child as well? That my finances have suffered to? That I don't think I feel "unlucky" too? Does he not think that it doesn't hurt me when I see my friends with 3 healthy babies while I feel like my family is broken. The difference is I don't resent God, I don't feel that I am unlucky it actually really pisses me off when people tell me sorry for your luck etc. I don't wish doom for all other multiple pregnancies. I am happy that my friends do not have to endure what we are going through. They have their own seasons in life I'm sure I would not want. Yes, life is hard. My body, my mind, and spirt is worn thin. I feel on the verge of a nervous break down often. I continue to pull myself back together and take the next step forward. Hell more than once my crazy thoughts have been written on this blog. That is all I can do. Put one step in front of the other and continue to move forward. I trust in God. Don't get me wrong as much as I wish I didn't I still question God Why Me? Then I remember I am not the 1st person in this world to loss a child and have another with special needs. There have been parents that have lost all their children for one reason or another. My life is not bad. I don't want people to feel sorry for me. I hate when people write that to. I suppose I should not grip then, but I can't express my feelings to my husband like I should be able to. So instead I post them to the world to see. I give it all to God. Ha Ha more than once I have had people tell me how luck our children are to have Jack and I as their parents. I find this hard to comprehend. Jacob's home health nurse came out today to look at the g-tube site and she made that comment to me after I answered her questions.

She said it is not often that special needs children have 2 biological parents to care for them with the means to get them everything they need to thrive. I thought about it, WOW how can I feel sorry for myself when there are so many other children and parents going through their own storms without their needs being met.

Jacob has private insurance and Medicaid. This has made it possible for him to receive everything he needs. This has been a blessing for us because we have paid very little out of pocket for his needs.

He sees caring therapist that take their time to work with him 2x a week each and an interventionist 1x a week

He has parents that have been blessed with jobs that make it possible for at least 1 parent to be with them at all times except every other weekend. They then have Aunt Fiki to take care of them.

I have wonderful friends that help as much as they can and are always there just to listen to me sometimes.

They get WIC which has saved us well over a $1000 in formula for premature babies.

Anyways I think I am pointing out to myself more than anyone else the blessings in my life and my childrens'. I wish Jack seen them. We have friends and family who love us. I feel bad for Jack that he does not have a "best friend" besides me. Sadly I don't feel like I can tell Jack everything because it is always return in negativity. Unless I am catering to every detail of Jack's "like" list I am doing something wrong. I hear criticism from the way  I dress, to what I buy at the store, to clean etc. It will be like Jennifer I appreciate you cleaning the kitchen, but.....(fill in the blank of what I did not do right) I didn't load the dishwasher his way, I through something in the trash that was recyclable, I forgot to turn the pool pump on etc..So then I bitch back at him that I do 90% or more of the kids care. Then he mocks me and says "yeah I don't do nothing" He expects me to do all the stuff he does and what I have to for the kids. The difference is things like clipping the kids nails (which I suck at) and cleaning the wax from their ears would never get done if I did not do it. They would get baths once a week if they were lucky. If it was not free from WIC they probably would not have it. They would be naked because they would not own cloths. Okay I don't know what rambling I have started now. I am going to bed. Jack tries to be a good husband and dad, I think he just needs a little medication to help him with his depression.

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