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.