TRANSPLANT!!!!!!!!! Completely healthy 3 weeks ago. High Blood Pressure, Blood work, Renal Failure, maybe a virus maybe Chronic Kidney Failure dialysis & a future transplant. That was supposed the worst case scenario.  But no, Kidney Transplant. My loving husband, who loves me fat or skinny. Loves me when I am mean or being kind. Loves me no matter what. He is laying in a bed going on day 7 and his life is depending on the good will of others. Who donates a body part? Maybe family if they can. What if they can't? Then who? I love my kids, but I love him different. I choose him, I picked him on purpose. He is what I want forever. When our kiddies leave, he is my funny best friend that dances and says crazy stuff, all the time. He is the love of my life. I don't want to have a life without him. So PLEASE God, PLEASE, make this work. PLEASE!!!!!!!!!!!

God?

Well I don't even know how I can talk about the past few days. It has been a roller coaster. The only ups would be the love and support I have received from family and friends. And the big win of having them not release my Prince Charming with Advanced Renal Failure.

All I can comment on right now is the guilt I have for being mad at Eddie for not doing things in the house when his body was unable to function. I hate myself for this. The sadness I am feeling that my best friend in the world may have chronic kidney failure. Why him? I am the one that this should be happening to. He is so good. He never gets mad at me for not keeping up my end of things. My heart is so broken for him. I can't stand to see him go thru this.

I am missing work which I wouldn't go to in a million years I need to be with him and with my kids. Easter is coming up, I don't think I will have the money for Easter baskets for the kids, they don't ask for much. They all did have one thing, but with the chance of Eddie going out on disability I don't know how I can spend any money. Of course I will get them some candy, but my babies will learn a lesson about doing without even when they are doing without their Daddy right now.

I will continue to pretend to be strong. But the ache I am feeling sometimes takes my breathe away. I don't want to live without him. Even though I can be naggy, I love him 1,000 more then the day we were married, I didn't even know that was possible. I will never take him for granted and I will even let him cuddle me when I am sweating in the middle of the night. These past few nights even as I hit the bed completely exhausted I still miss him so much, I feel broken : (

Fat Chance

So I failed at my no complaining today. It turns out after finding out the results, Ed has kidney failure and it is pretty bad. I want to go into fix mode, but I am stuck until tomorrow. We have 2 appointments tomorrow.

Today Evangeline did a great job at speech therapy, she was upset with Miss Kate and shook her head no at her. Big steps.

No more complaining

So, I do not want to complain anymore. I don't like it. It isn't the person I want to be. So since I have no followers on this blog and I intend to keep it that way. This is where I will complain. I feel like this, if I keep inside of me, I may lose it, so I have to have an outlet. However, I do not want to be a whiny complaining pain in the butt. So this is where I am doing it.

Yesterday, I waited all day to hear what Ed's doctor had to say... nothing. I told Ed to call at 5:30 since the nurse told him to call back before 6. He called and said it went to voice mail. Well when you call a machine always picks up and you need to press a button. But since my husband would rather sit around and worry rather then finding the problem and working towards fixing it, we wait. I made dinner last night and had it on the table, baby is in the high chair and I have to leave for work. I left for work with the baby in the high chair and the boys feeding themselves because Ed doesn't feel good, because he is so stressed out. I called 5 minutes later to remind him that the boys had to do their math homework. He still didn't make his way to the kitchen. At 8:40 when I have my first break at work, I call home Dylan doesn't have his homework done, he cannot find a ruler. I told him to print a ruler off of google images.  I arrive home at 11:20 pm and go to bed. I wake up this morning to 2 boys with incomplete homework. So I have to get this done before they go to school. This is very stressful I also need to go to their room and pick out all of their clothes for the day. The amount of dirty clothes on the floor and legos and animal figurines is overwhelming. I am now screaming at everyone about how I need help in the house. This is a conversation that happens daily. No one cares. Evangeline is now awake and needs to be fed and I have to use the nuk brush to wake her mouth muscles and find Dylan a new school bag since there was so much smushed food in his yesterday I had to throw it away. The boys are all off to school. At 9 AM I text Ed and tell him to call the doctor, he texts me back, soon. So I call, the nurse says the test results are in but the doctor hasn't looked at them yet. I told her very politely that this has consumed our lives for the past 24 hours and I would appreciate if he could call us as soon as possible.

It has been an hour and I haven't heard a thing.

I need to go get dressed and ready, Evangeline has speech therapy at CHOP today. Then getting the boys home from school, dinner made and homework done all before work. I also need to manage to have my house ready by Friday night since it is my turn to host book club.

The Hits Keep Coming

So last week Ed & Evangeline went for blood work. Ed found out he had really high blood pressure. He did a terrible job and passed out. He told the tech he should turn in his man card and she said give it to your baby because she did better, lol. Evangeline's blood work came back last week and every thing looks great, she is absorbing gluten beautifully. Since we haven't heard from the doctor about Ed, we assumed no news is good news. Until this morning. The phone rang at 8 AM, it showed on the tv it was a cell phone. We missed the call, but I listened to the message and heard Ed's doctor say his blood came back abnormal. We tried to call immediately, but the office doesn't open till 9 AM and the cell number doesn't accept incoming calls. About 8:45 my cell phone rings, but voice mail picks up before I can. It is the doctor, why is he calling me. Now I am worried, very worried. Again we can not reach him. After nine Ed calls the office and leaves a message the doc calls back about 9:15 and says that his kidneys are not functioning correctly. What does that mean? We have no idea. We went right to the doctor and blood work was done and urine was taken. The test results were to be back today. Ed called after lunch but still nothing. I am writing now as I anxiously await Ed's phone call. He said he would call back at 5:30. The waiting is killing me. I hope it is nothing, I hope it was a mix up in the lab. Hopefully I will know soon.

Princesses

Yesterday we took a trip to the Disney Store and we bought Evangeline 3 boxes of little Disney figures. We bought Princess and the Frog, Tangled & Minnies Bowtique. I am amazed at this 19 month old little girl loving all things girlie. She loved the Princesses she makes them dance and kiss. She just loves them and of course if she reacts positive to something she gets it. This could become a problem. 

Today Dylan walked outside and Evangeline said DOOR!!!!!!!!!! She probably won't say it again in the next month but she said it today.  Early Intervention is the greatest thing ever.

Colin On My Mind

I have been worrying about Colin since the day he was born. It started from the second he came home from the hospital. He had colic for 3 months, he cried every single day, every second he was awake. He started sleeping through the night at about 2 weeks old, but when he was awake he cried constantly. I remember looking back and thinking he was held for almost the entire 3 months, because if he would fall asleep we wouldn't move just so we didn't have to hear him screaming. At about 3 months we switched him from the dreaded Nutramigen formula to Soy and things got better. He stopped needing beach towels to catch the re flux after every bottle. We spent the next year having fun, he was fantastic. I remember these as the most relaxed time of my life. I wasn't working, my house was spotless. We would spend our days going to the zoo or driving an hour to go to a scrapbook store or to the Crayola Factory. When Colin was 15 months old things changed. He had his MMR shot and had his first serious fever. He started to change. He wouldn't let us change his diaper, he would get frustrated and throw his self on the ground and slam his head. It was very scary. I also was pregnant so I thought maybe he could sense the baby that wasn't even showing. At home Colin would play alone happily for hours. Playing with his dinosaurs, never needing Mommy (he was so independent). He would line matchbox cars across the entire family room. When things were going his way, things were good. Colin slept with us every single night. We tried to get him to sleep in his room. He started flipping out of his bed at about 15 months also, so we put him in his car bed ( not a great idea ). We would wake up in the middle of the night and find our 18 month old watching Disney movies in the middle of the night that he would put on by himself. For a while Colin had night terrors. He seemed awake but completely out of it and would just scream in horror. We decided it was because Daddy was watching reruns of Buffy the Vampire Slayer. When Connor was born Colin was just over 2 years old. Colin was never jealous he didn't really care that I was spending so much time nursing and caring for a new born. He was so independent and smart. Colin was talking in sentences and learning and playing with his "Dowasaurs".  I was at a party with good family friends one day and bragging about what a great big boy I had. Ed came later with Colin and it was a rare moment when other kids wanted to play with Colin. Colin did not like it, he didn't want the other kids touching the toys he had. He threw a fit. I was shocked, this wasn't the boy I knew.  

Colin continued to get smarter and smarter. He knew everything you could possibly know about dinosaurs at 3 1/2 half. He was starting to move on to animals, big cats were his favorite. He was almost 4 years old (still not potty trained) I was having dinner with friends and my good friend Jen told me to look up Aspergers Syndrome. I did and that was it. Colin had Aspergers. I told everyone teachers, & doctors, everyone told me no he doesn't. Colin was 100% potty trained on his 4th birthday. He was a pretty great kid as long as things went his way. I learned early that we don't tell Colin anything we are planning. God forbid I tell him we are going to the mall and then something comes up. Sure any kid would be disappointed, but for Colin this was an earth shattering event in his life that was not easily fixed. In September Colin started preschool, what a year he cried everyday, EVERY DAY the entire year. My anxiety got worse and worse ( I left out the part where Colin almost drowned in my parents pool at 2 years old and I went in a tailspin that involved anti anxiety drugs) We moved from Hatfield to Southampton (which Colin still hasn't gotten over). I thought nothing could get worse then preschool. I was wrong. 

Colin started kindergarten at Davis, his teacher was Mrs. Higgins ( Angel on Earth ) the year seems much better, but Mrs. Higgins went out on maternity leave ( Emily was born, who at 3 1/2 I started babysitting) Colin had a sub and things seemed to get worse. In May he was finally diagnosed with Aspergers Syndrome & ADHD. Colin's 2nd year of Kindergarten in the full day program still may be the worst year of our lives. The teacher who we will not mention is a lot like me she seems to be a perfectionist and very stern. Although I expect perfection (at this point) I am in love with Colin so nothing could be that bad. Colin has NEVER been a behavior problem in school, he also has never had any educational concerns, however he has very high anxiety and strives for perfection (my fault). I never really was able to figure out what he did wrong every day but in a meeting with Colin's IEP team, his teacher said in front of me that he was the biggest challenge of her career??????? Are you kidding me? How could this be. I still to this day have no idea. He wanted her to like him, he tried so hard, he even told her he would name his first daughter after her. I had meeting where both her and I screamed at each other across the table. One time a student on the bus called Colin weird, I was devastated, the teacher told me "well everyone thinks he's weird".  We made it through that year, Colin has expressed ever since he was out of the class that she was the worse teacher ever and when both of his brothers had her he cried and begged me not to put them through it. From 1st through 5th grade Colin was bullied by one kid in particular, he never really had any true friends. In the early years there were arranged play dates, there were tortured years of soccer. By third grade we gave up on sports. At that point he had 1 friend in 4th grade, that friends brother was in his class and Colin thought he had a safety net. Not so much that kid didn't really want to be his friend and found Colin to be a nuisance. That issue continues to be an ongoing problem because Colin desperately wants to be a part of this group. 3rd grade was brutal. 4th grade wasn't terrible, we still dealt with bullies and no friends but seemed to get through without to many emotional bruises.    5th GRADE we moved to a new school and sometime I may devote a blog to 5th grade, it was bad, bad , bad and ended terribly. Worst year for us both. 

Middle school. Where we are today. 6th grade no friends. He has some riff raff he sits with at lunch and really wants to be accepted. He even said the "F" word to stand up for himself and gain acceptance. It is short lived, he watches the other kids outside of school spending time together. It hurts him. Just recently he went to play some form of freeze tag I forget the name. I can see him up the block playing and I am thrilled. He had fun. He later tells me when he came up and asked to play one of the kids said "Colin, why don't you just go home" and then the kids had a full discussion about whether or not he should play and then decided he could play, he was it and never able to catch anyone : (

After that event Colin was on his way to swimming with the gym class and someone pulled his bathing suit down in front of everyone. I flipped out the boys were suspended and are not allowed to change in the locker room anymore. It doesn't seem like enough. That is where we are today. I am going to a conference in a few weeks about kids entering puberty with an ASD. He has an appointment with an organization that he will get social skills through. I obviously left out so much but wanted to give some background on my sweet, beautiful boy that drives me to want to make wine : ) 

VOODOO

I think I have a curse put upon me. We had a hard week. My oldest son with Aspergers, was bullied pretty bad. The school jumped on it quickly, somehow I don't think a suspension will be enough. We also have the stomach bug in our house. 


Evangeline is doing really great. She had 3 hours straight of therapy yesterday. OT first as she was leaving her special instructor walked in, as she was leaving we were surprised by the Speech & Language pathologist. She was a trooper, as soon as the Speech therapist left Evangeline was able to sleep, Mommy on the other hand had the 3 boys & then work. 


Evangeline got a new table this week, she is thrilled with it. She was sitting for a snack yesterday and after 4 months of getting her to sign or say more, she did it all on her own, over & over.


So happy with her progress.


Can people put curses on you? Bad things just keep continuing to happen around here. I am gonna look into it, lol.