Hmm

So, my life.
Things seem to be going great for Ed. We went and met with the Penn Transplant team. They are ready to do his transplant... as soon as we find a donor. His 1 brother & sister are scheduled to go next week and his Aunt & Uncle are trying to get in next week as well. If one of them is a match they can do the transplant as early as June. That would be awesome.


When we arrived home from Penn, my parents were sitting on the porch. I haven't seen my Dad in a few months, I can't believe that much time has gone by, but with this crazy life it has. My Dad looks so old and so sick. It broke my heart in half. I knew he was sick but I haven't really taken it serious. He is one of those people who is always sick. I was so upset with my Mom & brother for not telling me how serious things were. It was devastating to see my Daddy that way :. (


Today Evangeline had therapy and her speech & language pathologist told me she has Apraxia. I have heard of it, but didn't know exactly what it was. I know now. I have been researching it all evening. It does sound like that is what she has going on.

What is Childhood Apraxia of Speech?

Childhood Apraxia of Speech is a motor speech disorder. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. Apraxia of speech is sometimes called verbal apraxia, developmental apraxia of speech, or verbal dyspraxia. No matter what name is used, the most important concept is the root word "praxis." Praxis means planned movement. To some degree or another, a child with the diagnosis of apraxia of speech has difficulty programming and planning speech movements. Apraxia of speech is a specific speech disorder.

The act of speech begins with an intention to communicate.  Next, an idea forms, outlining what the speaker wants to say.  The words for the desired message are put in the correct order, using the correct grammar.  Each of the words are comprised of a specific sequence of sounds (also called phonemes)and syllables that must be ordered together.  All of this information is translated from an idea and information about order of sounds into a series of highly coordinated motor movements of the lips, tongue, jaw, and soft palate. 

The brain must tell the muscles of these “articulators” the exact order and timing of movements so that the words in the message are properly articulated. Finally, the muscles must work properly with enough strength and muscle tone to perform the movements needed for speech.

In typically developing speech, children make word attempts and get feedback from others and from their own internal systems regarding how “well” the words they produced matched the ones that they wanted to produce.  Children use this information the next time they attempt the words and essentially are able to “learn from experience.”  Usually once syllables and words are spoken repeatedly, the speech motor act becomes automatic.  Speech motor plans and programs are stored in the brain and can be accessed effortlessly when they are needed.  Children with apraxia of speech have difficulty in this aspect of speech.  It is believed that children with CAS may not be able to form or access speech motor plans and programs or that these plans and programs are faulty for some reason.

http://www.apraxia-kids.org

In a nutshell, things won't be as easy as  I thought they would be. There is something more to deal with.

As a woman, I feel I can handle anything thrown at me. I have been doing it. I really seem to get a lot thrown at me. As a mother it is hard and gut wrenching to see your children suffer. To see life be harder for them then it ever was for you. As a wife, best friend & partner, to watch your mate not feel well, weren't we just kids together misbehaving and doing naughty things where we shouldn't without regard for anyone else (18 years ago) how is he suffering this way. As a daughter, how can I watch the strongest and smartest man I know waste away. He has 20 years left, he is the one I call when I have a question about cooking or God or growing up with Aspergers. He is my Daddy. If God gave me the challenges maybe it would be easier.

NOTE TO GOD, Please do not give me any challenges at this point, I have to many other people I need to care for.

: (

So, what a life I am having. Ed's Creatinine level is getting worse. He seems to be in total denial. I am a mess. I think we should go to the ER at Penn and get this process started quicker. I have actually read about his condition, it is called IgA nephropathy. He has no idea what it is or how serious. He is also in late stages of this illness, but I am no longer allowed to ask how he is feeling or talk to him about it. So the fact that I ( and my sister in law Melissa ) are the only ones that think his treatment should be moving along faster., and his kidney function is decreasing at a rapid rate. I am not allowed to bring this up any more. I look terrible because every part of my body hurts. The level of stress I am under with this and therapy for Evangeline and Colin coming home having a nervous breakdown over wanting to quit Chorus, and Ed walks around telling everyone he is fine!! He is walking around with 10% kidney function and everyone who wants to lend a hand and be helpful, either making dinner or helping with the kids isn't going to feel like doing it, if he is just peachy. He doesn't understand that these things help me. He says he feels fine, but he can barely keep his eyes open. I am having a very frustrating day. I had to cancel Evangeline's OT this morning because my migraine was so bad I couldn't even see. I have to figure out how to get Colin home from school today since it will be during Evangeline's nap and she has therapy after lunch and needs to be rested. Then off to the nephrologist, for what? I don't know. Then I am taking Evangeline to an ABA evaluation, not sure if I will make it to Stations of the Cross or Confession tonight. When I end up in the mental institution, I will have this blog to explain why.

Light it up BLUE today. We are. I made t-shirts for myself and the kids this weekend, we have our blue porch light on. I was excited for blue day. I didn't imagine my entire life would feel blue. I sent Ed off to work today. It was very hard. I packed his renal friendly lunch and I put his medicine in a ziplock bag, and I want to sit next to him all day with his blood pressure cuff. I took a leave from work which seems weird since he is the one in kidney failure. I couldn't imagine him walking in the door and me walking out with dinner and dishes and possible homework needing to be finished. Living in our house is so stressful. It is unorganized, the boys don't help out and they really do leave a giant mess, all my fault. Having the baby and going to work 3 weeks later and then watching her and another new baby until her diagnosis at which time therapy started and for the last 3 years Ed being sooo lazy (little did I know he was in kidney failure) our house has gotten away from us and I am so overwhelmed, I don't know where to start. You wouldn't know by walking in to the house but please don't open any doors, especially the basement or the garage. I would like to have things organized and those boys in line before April 16th when I have to go back to work. The likelihood of that happening is 0%. 

This week we go to the Nephrologist at Abington and hopefully get some answers. I don't like waiting. When something happens like this I cry and ask God why and then I do everything I have to do to make things right. Waiting for someone else's schedule is very hard for me. I know I don't have a choice but I want so bad to get him a new kidney and get my Eddie back.

Crazy Week

Well life is crazy. I had my 1st anxiety attack in a very very long time. Ed came home from the hospital and I picked up his medicine. It was so overwhelming. I have since gotten the hang of it. We have been blessed by dinner angels. Every night since Ed arrived home and most nights when he was in the hospital we have received dinner. A meal train was started and dinner is covered for at least the next 2 weeks. It is very hard to take from so many people. Of course I have signed up for many meal trains and have always been happy to help out, so I know everyone is happy to do it, it just feels funny. Ed is walking around the house looking great. He gets tired very easy, which makes me know the leave of absence I took was the right thing to do.  I hope we get some answers next week. I would like for Ed to have his transplant in the spring, but since I know nothing about having a transplant I don't know if that is even possible.

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.

Making Progress

Things are going great. Evangeline is really responding to all of the extra work we are doing. She didn't remember to give me a high five today, but she started waving BYE BYE!!! This is ENORMOUS. I have been working on this since she was 6 or 7 months old and she has never done it before. It was one of the biggest red flags. We were having dinner with family and as always I asked her to wave bye bye and she did, for about a full five minutes. This may not seem amazing for a typical child (like 2 of my other kids) but this is huge for my Baby. She was also having a magnificent time playing with her Uncle Jeff and he was saying one.. two.. and she was trying to say three back. I am trying to not cry in front of people, but when she waved and said three, I kept filling up.


Busy week ahead of us. Connor is having really bad knee pain again. We haven't had this is quite along time. So I need to make him an appointment. Back to the dentist for me again today. On Wednesday I am going to a day long conference at CHOP, Next Steps is the name, I am excited and my Mom is going with me. Hoping to hear from the Speech and Language Pathologist today. Lots of other therapy this week. So excited to continue working with my princess.

Over the Shock

Things are looking up. I am enjoying spending so much time with my Princess. I taught her how to high 5 yesterday. I hope she remembers today. Therapy was long but good on Friday, we are really going to work on meeting her sensory needs. I bought a full length mirror for the family room and put all the boys pictures at eye level. She LOVED both. Really responded to it, I think she even pointed and said Dyl.

Yesterday I was so touched by a friend of mine. We have been friends for a while. She is someone I enjoy being around, she has great values and a terrific dry sense of humor. She also has 4 kids. 3 boys & a girl just like me, but her girl came first. This friend of mine, read a book about Autism, she sent me recommendations. She has pinned things for me on pinterest, she has posted uplifting quotes on facebook. They may not all be for me, but it felt like they were. The situation we are currently in has showed me who real friends are, what real friends do. She isn't the only one, although she is the biggest pleasant surprise. I have 2 other people in my life who have really stepped up, I already knew they would but the love I have for them grows deeper everyday. I have been blessed with so many wonderful friends and family members.

So far this is what I have done. After tearfully leaving the doctors office, I managed to catch my breath long enough to call Evangeline's case worker, Monica. I left her a message with the terrible news. When she called me back she set up an appointment to come see us Monday. CHOP recommended I have Evangeline's hearing rechecked. The next morning I called to make the appointment and the had an opening that afternoon. So after my meeting at Colin's school on strategies to help him make friends, we were off to CHOP, the hearing test went well (kind of hoping it didn't and that's what the problem was). That evening I had the Mother/Son event with Connor. Then off to the beach for the Polar Bear plunge. My plan was to keep the new info about our lives a secret so we could enjoy the weekend with our friends. I did spill the beans and I am glad I did, it is good to have a great support system. An older gentleman walked up to Evangeline on Saturday and put an autism pin on her, I looked at Ed, thinking could that man tell? We came home from the shore and I worked from 12 to 9:00, just wanted to be home with my baby.

Monday arrived, Monica came. As of right now Evangeline will see her SI therapist (who she loves and sees 1 time a week since November) she will start seeing her 2 x's a week. 1 day of OT and waiting to hear about 2 days with a speech and language pathologist. I made an appointment for both Colin & Evangeline to see CHOP's genetic doctor in AUGUST. I signed up as a Team Captain for the Autism Speaks Philadelphia Event. I finished Jenny McCarthy's book Louder Than Words. I have read about 100 blogs about Gluten Free diets. I have read at least 100 websites about Autism.

Today is a good day. I am optimistic. I will try to stop thinking about her future, those are the thoughts that bring on the most tears. I will take this day by day and give everything I have to getting my Angel to talk to me.

I love you Ma Belle Evangeline.

This is my very first time writing on here. Today I am just putting a few things down, because of course I started this when I had 10 minutes free. 


On February 16, 2012, my perfect 18 month old daughter Evangeline was diagnosed with Autism. In the last week I have gone through so many emotions and need a place to put my thoughts. 


1st thing which I will elaborate on later. Why did I feel like she was a different person leaving the doctors office. She was exactly the same. I was changed forever. How do I get through each day without treating her different, so far I am having trouble dealing with this. I am all over her, noticing things I have never seen before.


2nd, why do I feel so guilty that this is much more dramatic then when Colin was diagnosed with Aspergers Syndrome at 6 years old. I can only think it is because I knew he had Aspergers and needed the label to get him help. I DIDN'T KNOW THIS, nor did I want to hear the words.


That's it for now, have to go to the dentist.