Tuesday, August 30, 2011

update on the weekend

This weekend has been pretty layed back. Heather and I have caught a cold at least that is what we think. So we have just been relaxing. I started reading again. I used to read pretty frequently but just lost the desire and time. The kids have been doing pretty well. We have a busy week ahead. Eli has an overnight sleep study, therapy , ASL tutor. Ari has her hearing test on monday hopefully it will shed a little light on why she is always so loud. If not it will at least rule somethings out.

On the facebook question of the week. I didn't get as many responses as I would expect. The responses I got were pretty similar. Family and taking just a few minutes for themselves. I myself enjoy hanging out with family also. However I enjoy knitting reading a good book watching a good movie with the mrs.

I would also like to let everyone know that all comments are monitored thru me. Unfortunately I don't have alot of time to check them. If you leave a name I get to them faster than anonymous.

Thursday, August 25, 2011

wow how time flies

It is crazy how the days blur together. I just realized that it has been 4 days since my last post.

Well here goes Eli has some new people to work with him starting next week. He has a sign language tutor coming in once a week for the next 2yrs. It is very cool. We all will learn alot. This is gonna be very beneficial to the whole family. I can't wait to see how he does. He also has a new pt starting. Heather had an appointment with them to go thru all the background of eli and what we want to see happened. They also took her to the room where Eli can go to school. We would be able to watch him and learn what he is learning without interfering with his learning. We at also had the wheelchair company our to adjust his chair. It wasn't as helpful as i would of hoped. They will be trying some support for his head and sides if the adjustments don't work out. We will just have to see how it goes.

The other kids well school is going ok they are throwing a big fit over the kids way of eating. We want them to be healthy and be able to enjoy good warm food. The schools says they won't allow the kids to use a microwave. I think is ridiculous. We have even offered to buy one and maintain it. We are looking into other options if the school continues to be unwilling to allow a microwave to be used.

Emily is enjoy some of the schools extras like music and drama that will be coming up soon. Academic wise she is still really bored. Jace is doing well. He has met a friend he talks about and hopefully he will be starting speech soon. Ben will be getting a new IEP soon so he can get more support the school agrees atleast on this avenue that he needs the extra help.

Heather and I have been very busy with house work and cooking lots of yummy food. We just got some new cookbooks hopefully we will find some super yummy recipes. Once we get things settled down just a bit I will post some links to our favorite recipes and what we have done to make them ours.

I have also started a question of the week on facebook I may transfer it to this blog. I am trying to lighten up things and have some fun getting answers to all different questions. Feel free to answer any and all. I will comment over all how people answer i think it is an interesting thing to do. I don't think people in general sit back and just relax. Some will be alittle serious and some will be fun.

That is all for now. Have a fantastic day and if you haven't yet smile.

Sunday, August 21, 2011

upates on eli

Yesterday we finally got some information on elis EEG. It was later in the day.,Results showed that he has abnormal brain waves. In layman's terms seizures. It hit me pretty hard. I had them for almost 10 yrs. I know that this could be a rough road for us. I don't blame myself but it just really bothers me. I knew that it probably gonna happened sooner or later I was just hoping it would be much later.

Saturday they got us into a special clinic for seizures. This clinic day is only for people to come in when it is very important to be seen. We saw a really nice doctor. He did a full examine on eli. He told us that eli was having seizures. His EEG showed spikes in his frontal lobe. He also said that his brain wasn't functioning at full capacity and that we probably already knew that eli was delayed and that he was cognitive delayed. The way he said it was kinda rude. He also talked about elis muscle tone and that a seizure or a stroke wouldn't of caused it to happened so quickly. He ordered a MRI to check out his brain and to make sure that there is not any damage or blood clots going on. He put him on a med called KEPPRA. It is supposed to be the least interacting of all the meds. We shall see what happens. They are supposed to call us next week to schedule his MRI. He has already had one just recently however I feel that this doc and elis neuro doc will read them in depth to make sure that they are not missing anything.

On a plus side we reorganized the house moved around 3 rooms and it is so much better. Wish we would of took before and after pictures. We now have a room for all of our computer stuff and a really good place for the kids to do home work and just to relax.

Will update when i have more information. Smile it is a new day.

Thursday, August 18, 2011

two day update

The day start at 4:00am on Wednesday. Tiny was really tired. We played and read books together. He even helped me with laundry. 6am heather woke up and helped get Eli ready for his EEG and his AFO fittings. The EEG sounded like it went well. We should have the results by Monday. I truly feel that the results will come back with seizures. I hope not but we will see. The AFO doc said he wanted to try some adjustments and hoping that it will work for him. If not they are not sure whats next. He still is having issues with his right leg. We saw the renal doc today. He was a really good doc. He went over all of elis history. He was pretty accurate. He then ran urine, blood, and ultrasound on his kidneys. Hopefully we will have some information in the next few days. Hoping the weekend is uneventful.

Have a wonderful weekend. Will update more when we know more.

Tuesday, August 16, 2011

Hi all it has been along time since I have posted. I have been very busy so many changes and so many things going on in my families life. Here are some of the things in the last five weeks.

Health wise i have been doing pretty good. I have my bad days and my good days. Just like most of you with any illness. We as a family have changed our diet twice in the last 5 weeks. One by choice and one because it was the best for our family. We switched to vegetarian first. I know those of you that know me are saying really are you kidding me you are totally a meat and potatoes guy. Yes i was truly a vegetarian and i liked it very much. We did it for about 3 wks. We figured out some really yummy meals. That totally satisfied my urge for meat. It did take me a bit and i did cheat just a few times however i stayed true to it for the most part. Then about 2wks ago we got some news from Benjamin's doctor stating that he is allergic to gluten, dairy, and eggs. Wow now that was a very interesting thing to hear she said that we needed to take it out of his diet like yesterday. That it was basically harming him and he needed to stop eating it all together. This was an interesting discussion. We were just so blown back. I had done this once before but on such a low level and it was a choice to do it not a have to for health reasons. I also had meat to supplement and being vegetarian we didn't have that option now.  We have been trucking along with this new diet for about 2 weeks now. It has been a rough road. Financially, Mentally, Emotionally and Physically. From all the research i have looked up this could ultimately help me not have to take so many meds. Help the kids with behavior and some medical issues that we have in the house. Heather has already seen some benefits. She has lost 8lbs and her headaches have been less. I will be posting some links and recipes that we have tried and have enjoyed. Thank you to all who have supported us with recipes and suggestions. We have done many searches for information and recipes. Any help in this area would be greatly appreciated.

Eli there has been  so much that has happened in the last 5 weeks its just so over whelming. Heather has done such an amazing job at keeping updates on her blog. I would totally suggest reading it if you haven't yet. He is a fighter. His new meds are making him gain tons of weight and the docs as always are not really listening and they continue passing the buck around. He has an EEG tomorrow. I hope they can figure out what is causing his legs not to work correctly, his retaining of water, his new thing we are pretty positive its partial seizes. I had them for about 10yrs and what i saw it resembles a partial. If it is i am just blown away. I hope its not but i hope it is just because it may answer some questions and reasoning for some of the things that are going on. He has renal this week and that should answer why is so bloated and he is retaining so much water. Not sure what will come out of this week but hopefully some answers.

Emily, Jace and Benjamin started school on Monday and so far they have only been half days. Tomorrow will be the first full day. Ben has never been in a full day of school. I sure hope the teachers are prepared for him. They currently have a para to help him through the day and make things easier for him. Once we get the IEP back in place he will get more services. Jace so far is liking it even though it has only been 2 half days. We will just see how it goes. Emily is already bored with school it is way to easy for her. We are keeping a close eye on what they are giving her for homework and we have already talked to the teacher about how smart she is. Hopefully they will accommodate for her being so smart. Ari seems to be doing well. She keeps asking when can she go to school. We have to jump through a bunch of hoops here in order for her to get into early preK. It is much harder here to get some of that extra things for special needs kiddos.These kids make me proud to be a father. With all that is going on with eli they just seem to take it day by day and don't really make it a big deal.

Heather has been doing pretty well. As good as you can be with all the substantial changes in the house. With all the new things going on with Eli and the kids. She does better than i do sometimes. We work very well together and we help each other get thru these hard and sometimes nearly impossible ups and downs. I am sure with all the updates on her blog you can understand what she is feeling and thinking. If you haven't visited it yet you should. Without her i don't think that i could be successful in this diet and way of life we are in. She makes me very happy to have her in my life. With all the ups and downs in our life we are meant to be together and i love her with all my heart and soul.

I will do what i can to keep you all updated more than i have it wont be 5 weeks i promise.  If you haven't yet smile.