Tuesday, May 29, 2012

Edwin, Easter "Twinkle Ears" Holstein and NOOOO, not my back!!!!

We have had a lot going on around here. So first I will tell you about the boy Edwin. We went to the cardiologist last Tuesday and he has 2 leaky valves, they are putting him on blood pressure meds to help his heart slow down so it can heal. And then on Friday we left at 5:30 (I know!) in the morning to go to Riley, so we could rule out Rheumatoid Arthritis. I now know that when a Dr. says they want to rule out something they actually mean that they are pretty sure he has it. They put him on steroids and as Edwin says "I am walking like a new man!". We go back in 2 months for the final word, but they are pretty sure he has it. However, we found out it is not the end of the world, he can go on to living a normal life that can even include sports and guitar lessons. And as soon as we get him straightened around with all of his issues and we spend some quality time with our other 6 kids, we will get him back in all of his activities.

And now onto our newest family member...we got the bunny!!!! We are in LOVE with this little thing! So far the dog and our obese cat seem to like the bunny. Our cat Butterscotch wants to kill it. So we have to put her in the kitchen when we give the bunny free reign. Let me tell you now, there is nothing cuter than seeing a bunny hop on our dog and race around the dining room. She is also super smart and well on her way to being potty trained!

And now the freaking back! We were on our way home from a wedding and Eddie hit this bump, and all I felt was pain. I immediately went to bed after taking every pill that I thought would help. On Sunday it took me nearly an hour to get to the point of walking, and then between Church and being a Team Mom for Challenger, I was near tears by Sunday night. So, Monday after the 6 got off to school I went to the ER. And those people medicated me to the point of stupor. I felt no pain, I did not know what day it was....I felt great! And then I started throwing up everywhere...the car, the yard, my poor friends Sarah's (sorry Sarah!). It was horrible! So today I am on fun meds, and feeling sore but better. So, on the first week in a month that Edwin does not have any appointments, I now will have them because I ruptured a disc...fun.


Note, I just found this blog and I drafted it instead of publishing it....whoops! Probably does a better job of explaining why the dude has been so busy!


Overwhelming...

I haven't blogged in a while, it is not that I haven't had something to say...sometimes we just have rough weeks and we have had several of those lately.

Edwin is doing better, the little dude has been through so much! I have started calling him Amazing instead of Edwin now, because he is. He complains a little about going to the Dr, but he goes. He cries when he gets shots and when they are seeing how far he can flex, but he puts up with them...and all I can do is hold his hand. I am so thankful for all the Dr's we have dealt with, ok maybe not all of them. His Cardiologist could be a little nicer, and we may just switch him over to one at Riley, they are great there!

My back going out happened at the wrong time, things still have to be done. So I take the fun pills, suck it up and get through the day.

Tomorrow is the kids last day of School, I can't believe the year is over. The Schools are so impressive here, and I can honestly say that I haven't had one day of worry about their safety and they have also not caused us any undue stress, which I appreciate soooo much. Considering that the kids were in 6 schools, and it seems like every school had 5,000 activities...we LOVED it and had a very enjoyable year!

Miss Emily is home sick today, poor baby! She has a temp and a dry cough but she will be in the pediatrician's office today. Our nephew had Strep and they were all at a cookout on Sunday. I though we had dodged a bullet when I called our poor Doc's on Labor Day worried about Edwin being exposed to it, and then she gets sick. I am taking no chances with Strep! I am praying that I am overreacting over a summer cold!

I think that is all I can do today with the sickie here! Have a great day!

Saturday, May 12, 2012

An Edwin of a different color...

I am tired of writing about health issiues. So I thought I would write a funny blog about the funniest guy I know and that of course would be Eddie.

If you don't know Eddie he is this crazy energized little bunny on a caffeine high and with no filter of any kind. Yesterday while we are getting the kids ready for school, he was wearing a Batman mask and tried with all his might to sound like him while telling the kids to put their shoes on. (For the record when Eddie is home and "helps" it takes about twice as long.) After we finally succeeded at getting 4 of them out the door and I say a silent thank you to God that we got them out safely, Eddie loads up the kids in the car and then runs in the house like a 6 year old to show me this huge toad that he found in the yard! I scream like a child hoping that the poor thing doesn't get loose and give Icee something to chase. We finally make it in the car, and Eddie then cranks up Led Zeppelin or something as equally annoying at 7:30 and has the kids start doing some movement with their hand, and attempting to head bang...all I can think is I just fixed their hair. He then makes a comment about some guy on the road dressed oddly and of course the kids are repeating it. And that my friends is all within a half hour time span....I am tired, let me tell you.

Eddie writes skits for Church sometimes and he also leads Children's worship every now and then ...last week he even MC'd an event to help the junior high kids go to camp. Is this great that he does this? Yes...it also terrifies the heck out of me. Why? You may ask would your husband doing things to help at Church terrify you? Because they give the man a microphone! Remember he has NO filter! One of Eddie's favorite things to do is to see how far he can get with someone, concerning humor.

Eddie is always on, I can count on one hand the number of times that I have actually been in a situation with him not cracking jokes. I am not this huge LOL person, I think to him that means a challenge.  I can not even count how many times he has sent me a text at the wrong time that has nearly made me pee my pants...examples, meetings, IEP's, ...you get the idea.

Just recently, I filled about an application to work for our Church this summer for a day program for low income kids. One of the questions was Are you in any counseling? I simply put "Yes, I live with Ed Holstein".  That is all that needs said.

Now, on to the sappy part...you are welcome to skip if you would like. I can not imagine my life with any one else on this Earth, he is absolutely what I need in my life and that is not to take things too seriously. Because when serious stuff happens you need some one there to remind you that the world is not going to end, and that life is about living. I do think however life is NOT about bringing creepy toads in the house EVER again though.

So, on the Mother's Day weekend I would like to thank that insane man for choosing me to be his wife and the mother to his equally insane children. For getting down on one knee about 5 times a week to reenact the shoe scene from Cinderella with Melody, for getting ballet lessons from Emily (and looking like a girl...), for trying to show me in detail some crazy thing that Tobey did that I missed. I want to thank you for moving everything in your schedule to take Olivia to a dance, and being Edwin's coach, having the "talk" with Alison and last but not least...Lena being alive with her attitude, is testament to your love for these kids.

God knew the perfect guy to make for me....I love you.



Thursday, May 10, 2012

Sometimes I wonder.....

The other night while I was getting my Tobey cuddle time, I asked Eddie what he thought Tobey would be like without the 'tism. I probably ask myself that a couple of times a week. We have come to the conclusion that he would probably say some crazy off the wall things and we would not get a word in edgewise. It used to make me super sad to think about what I may be missing out on, what he may be missing out on. But now, it still is a little sad....but getting easier.

It seems like the more I get involved with special needs the more I realize how that is the direction my life is supposed to go. When I was a kid, I went to Church with what they called at that time a mongoloid (thank God they have stopped with that name), and I remember being so curious about her, but being told that I should not talk to the family. I remember trying to get to know the girl that lived across from me that talked with her hands and seeing how my Grandmother who had polio run her own business, with no excuses ever. I high school I was irritated that there was no gym class for a girl in a wheelchair and spending my study hour hanging out and attempting to do some kind of sport with her (to be honest it was much better than study hall). And then in 2008 we were told that the boys had Autism. Crushed.

At the time I was angry with God, really angry. Do I think now that God gave the boys Autism? Of course not. But when you don't have a strong faith, sometimes you tend to blame God for everything. I do believe however, that God has a plan to do some awesome things with the hand we have been given. I have no idea what....but I am confident that he does.

So now, instead of wondering what Tobey would be like if he could communicate and how Edwin would be if well...he didn't want to kill us (insert awkward laugh here) I am going to wonder what amazing plan he has for them. Who knows Edwin may end up being the next Steve Jobs...and Tobey? Well, we all know that Tobey could easily be a male model or a professional runner.






Wednesday, May 9, 2012

What a difference a day can make...

More updates on the Edwin....

Yesterday we got a call from the Dr and we were told that Edwin most likely has Strep Arthritis, not the end of the world. He could be in pain for 6 months, and then everything would be back to "normal". And then today the Dr. called and we are now looking at Rheumatoid Arthritis or Rheumatic Fever on TOP of the Strep thing. Nice.

So, on Friday we have to take Edwin to Mishawaka and get an echo cardiogram (help me spell check!) and then next Tuesday he has to get that weird eye check done and then next Friday...you guessed it. We have to go to Riley. Crap. I thought we dodged a bullet, but we did not.

They are concerned about his heart, due to Strep. A couple of months ago 6 kids and Eddie came down with Strep. Edwin showed no symptoms, so we didn't really worry about it. Well, I guess his showed up in a different way and the antibodies (?) are attacking his joints and causing him pain. And then if Strep is left in the body it can mess with your heart...hence all the heart testing. I guess that one of his other levels came back high today and that is what makes them think that he has real arthritis not just strep arthritis. 

So, today we took the boy to get a shot and he is not talking to me still....isn't parenting fun?

Keep the little dude in your prayers...this may be a long road.

Tuesday, May 8, 2012

Yet another club....

I know, I know I may be the worst blogger on Earth. I thought for sure when I became one of those stay at home Mom's I would get better. I am here to admit I have failed you, I apologize.

So, here is the latest on Edwin. Last Thursday we took him to a Psychiatrist, and they believe that he is in need of services (ya think?), so he will be admitted as an out-patient and FINALLY we will get somewhere on the whole hearing voices problem. And then we went to his Pediatrician that afternoon because of the pain the kid is at night. The Dr, sent us over to the hospital for bloodwork, Xrays and an EKG. On Friday we got some of the results and we were told that one part of his heart is working a little harder and some of his levels were a little off. We were given 3 possibilities of things that could be wrong...Rheumatic Fever, Lupus and Arthritis and as crazy as this sounds I was hoping for the fever thing. Because out of the options that is the only one that is not Chronic even though it sounds a little 3rd world. And then yesterday we were told that he has Juvenile Arthritis, that is chronic...you never get rid of it.

The next step is we go to Riley in the very near future and get the "officail" diagnosis and start treatments so the little dude can be in a little less pain. We also have to stop him from plying baseball (he will be the assitant Coach) and change a few other things for him. He also has to have some weird eye exam that looks behind the eye and gives

As for what caused this I have no idea...in the back of my mind I worry that it may be from all the medications that he has been on with the 'tism. One thing that we keep being asked about is when we had strep a couple of months ago, and they are testing him for strep right now. So, they must see a link, but I have no idea. It seemed like Edwin started having a ton of problems start within 2 weeks. Everyting from hearing things, excessive mood problems and a ton of pain.