Sunday, November 6, 2011

the last couple of days

Its has been interesting couple of days. They have been stressful and kinda mellow all in one. It has been pretty difficult to deal with some of the stress that has happened over the last couple of weeks. The frustrations with so many things. Holidays have always been my worse. Then with all the new things with Eli and all the normal things that stress people out during this time of the year. We have made some more changes to hopefully decrease the amount of stress in the house. We shall see in the next week or so. Heather and I have been working out and spending more downtime to just decompress and that has really helped us I feel just to breath for a few. Thanks to all who answered my stress question on Facebook it was nice to see how others deal with stress.

Ben has had a couple of meltdowns which have lasted for hours. It is so hard sometimes to just ignore and not feed into his screaming fits which he has no control of and has no ideal why he is even upset.

Eli has been doing ok his choking and gagging is still going strong and I am still not sold on the trach idea. I just feel that there has to be some other options. They are saying that we may need to stop the robinal for his secretions due to the heart rate increase that the medication can cause. Mind you I don't remember ever being told that this medication could cause such a problem. We are asking around and getting advice from others on what options that they have heard of. So hopefully when we get this care meeting to discuss we will have some to discuss and see what the doctors say. Right now one of Elis' main doctors says the trach would be permanent. We will just.

Last night we got to go out and see a movie and dinner. We went to a new vegan restaurant it was called Eden Alley super yummy food. It is a total relieve that we found a place that values good food, the healthiness of the food and value. We saw the tower heist. Wow I would totally recommend this movie very funny. I feel that it was a well needed and well deserve night out for us and it was very relaxing and stress free night. Gotta love those times.

Friday, November 4, 2011

Wow what a dayI

Today started out with exercising at 5:15 am just like we do every Monday,Wednesday, and Friday. We did our routine and worked out for about an hour. We waited to see if we had a nurse today. Which we knew it was a possibility that we may not and we were totally ok with it. Got the kids up and off to school. The I took Eli and Ari to playgroup at the Kansas school for the deaf. It was nice we talked about how to teach reading to someone that is deaf. Heather stayed home and got Jace to his doctors appointment. It all was good until then.

Jace had his appointment it was supposed to be at the location that heather and Jace were at. Unfortunately someone messed up big and scheduled it when the doctor was not at that location. I can only imagine how frustrating it was for them. Earlier as i was coming home heather text me and told me for the 4th time our heater went out and the house was freezing. So just crazy. We just can't get a break. When will our landlord just stop trying to fix things with just parts and take the advice of the professionals and replace the damn thing. So then heather got home and then we ate lunch and got to Jace's IEP.

Heather received a call from Eli's Pulmonalagist and it was pretty emotional to say the least. He wants to get a team meeting together to get a new care plan in place. He has said that if putting Eli on benedryl and taking him off of zyrtec we may have to consider a permanent trach. This would help with his secretions and keep him from chocking at night. I truly don't think it is the best thing. There has to be other options. Maybe I am in denial. It just frustrates me we get going and stabilizing a symptom and then another one flairs up and no one knows what to do.
Jaces IEP went well they are wanting to put more support in place to help him in speech therapy. The speech therapist thinks that Jace has understanding problems when he says a word that it is heard and it should be another. She thinks this is the reason for spelling problems and testing problems. They are going to have someone help him with some of his test to understand what is written. I can't wait to see the changes and how it should help him academically and socially.

Ben is in another one of his moods tonight. Mad about everything. Screaming and shouting. Totally no patients. The life of an autistic child. Some days are good and somedays are not so good. This is one of them.

One frustrating day after the next. Can't wait until tomorrow Heather and I are going to go out and see a movie. Just her and I.

Thursday, November 3, 2011

How times fly

The week in review and a brief brain dump.

Emily had her birthday on the 27th. The grandparents came up and spent the weekend with us. She went shopping and got lots of really nice things. Shoes her ear pierced and lots of other pretty cool things. She had fun going shopping and using her own money to buy the things she wanted. She is enjoying school. She has her first performance coming up next week for choir. It will be really cool to see her sing. She really enjoys singing. She has been doing violin for about 6 weeks and she is doing pretty well. She is doing really well with the responsibility chart doing her chores and being respectable.

Jace has had a doctor appointment and it went ok. They do something in the sessions with poker chips. He recieved 4 out of 5. They say that he is pretty stubborn. The doc said that we should just let him eat whatever he wants. We don't feel that is the best way to encourage him to eat. We are discussing ways to modify what they want us to do. Hopefully we can get him to eat more. Atleast try something before saying no. He is doing well in school. The school has him doing speech therapy and it seems to be going well. Homework is going well for him also. He has his days some are good and some are bad. There are also days he is not himself. We are watching him closely and making sure if there are any concerns to let the doctor know.

Ben has had two doc appointments since the last time I blogged. His feeding therapy team and his behavior doctor. His feeding team says he is needing more food and water. They also say that the school needs to do a new plan and give him more support and time to get things done. They are currently putting a plan in place for the school. He also has his good and bad days. His behavior doctor thinks he may have ADHD also.

Ari is doing well in school. She is still very loud and OCD about so much things. So many say there is nothing wrong with her however her teacher has said she needs extra help. So we will see what happends.

Eli well so much going on. He got a new helmet and new glasses. He also is getting new hearing aids to see if they make a difference. The doctors think his mito is getting worse and that his apnea is getting worse. He is also having so much more secretion. He is maxed out on his meds who knows whats next.

Me well so much is stressful and fustrating. I see how life has been getting harder for heather. It's really hard for me. I as a man have no idea how to fix or make it easier for her. Everyday i see the weight getting more and more. Me being a man trying to fix things is just really rough. I know that sometimes all i need to do is just listen but it isn't always easy. My OCD has gotten worse over the last 2 weeks probably because of all the stress and just me trying to be helpful and unfortunately it doesn't always work. Sometimes it makes it worse way worse. I love heather with all my heart and to see her struggle with all that is going on and the stress that is happening is just rough. She deserves a break. A time to not have to be "perfect". To not have to worry about Eli. That is way easier said then done especially when eli and her life are pretty much one. She does everything and I wish I could take the burden off of her however It is hard for someone to pick up this late in the game. 23 months of her knowing everything. I feel sometimes that i don't know my son or wife no where near that i should. It is rough. I don't know what to do or how to fix it. It is just one of those things with a special needs child that it seems that moms are always the primary and dads are secondary in the care. Why is that the case? Why can't we share it? I guess in an ideal world that could be the case however our lives with a complex kiddo nothing is ideal.

Sunday, October 23, 2011

this past weekend

This past weekend has been very nice. Especially how the week went it was kinda stressful. Which really isn't ideal when we are trying to keep our stress level down in the house. Some of it was good and some not so good.

Yesterday we layed low we took care of some errands.Our heater went out in the house again so this was a good time for us to leave since the house was at 65 degrees. Not very good for Mr. Eli who needs to regulate his body temp. Took care of a Christmas gift. Got some winter clothes at our local thrift store. Which by the way i think that savers is the best thrift store in the area. The we got home the repair guy was here to replace the stove. The heating guy was here and spent about an hour fixing the heater. Hopefully it will last longer than 48hrs.
Today Sunday we did breakfast and lunch then went to a pumpkin patch close to our house. It was super fun. Tiny did pretty well however his face was flushed and he got super fussy towards then end. He then slept for about 3hrs. Poor tiny man. Hopefully he will get back to normal. He is struggling at night. Coughing and sat dropping. Can't wait to see what the docs do to help him. The older 4 had a great time. We got pumpkins in the next few days we will be carving. Heather has an awesome ideal for Mr E pumpkin. We will post pics of this weekend and the carving in the next couple of days.

Our destressing of life journey is going pretty well. The treasure chest for the kids seems to be working well. It works off of a choir and behavior model. They have to get 4 days out of 7 in order to get something out of the chest. Using a weekly board and magnets everyday. There are lots of different things in it. We went the cheap route and found some very inexpensive things that we thought the kids would like. We also included an extra opportunity for the kids if they eat there lunch and dinner. If they eat both they get put into a drawing for something special at the end of the week. They all got to pick one thing from the chest this week. Hopefully they will get to pick 2 things this week. Emily won the extra and we decided to do frozen dessert. Gluten free and dairy free obviously. Emily chose heather to go out and they had a good time and ate a new place that was super yummy.

This week i hope that we can get back on track and lessen even more stress. We have a couple of easy days then it starts to get really busy on Wednesday. All the kids have conferences on Thursday except for Ben.

Good night to all hope your week is as good as ours will be.

Thursday, October 20, 2011

to say i am still alive

Oh my it has been along time since i last posted. So much has gone on. So little time and i type very slow. I am glad that i have such a wonderful wife that keeps you all updated. I wish that i could promise to do better however life is crazy. I just got a labtop for my birthday so things should be easier to do the updates from a man's point of view. I will be doing some remebrances to go back to the past and state how i felt and what was going thru my mind at the time. I will also be doing regular updates. In the next few weeks i will be posting some recipes and making some changes to my blog.

Things are getting better and easier around the house. Heather and I have made some changes to lessen the amount of stress in the house. Kids are taking more responsibility and we are limiting the amount of appointments outside of the house. So we can can spend more time at home and get more things done at a better pace. So far so good. Will keep you updated.

So much has gone on with eli. Too much to type at this moment. I will try to get the information together in a post in the next few days.

Smile if you havent today.

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.

Monday, June 20, 2011

Fathers Day

Yesturday was Fathers Day I hope that all of you out there had a wonderful day.

I did it was nice to be with the kids and just hang out. We went to the art museum. It was free and very large. We got to see Monets Water Lillie's. It was the first time in yrs to have all 3 of his paintings in one place. It was very cool. I cant wait to go back and see some of the things that we couldn't fit in. We all went outside and saw some of the sculptures and saw the largest shuttle cock they had three of them. Very cool. They also had a very large tree sculpture that looked like it was mad of metal.
The kids seemed to enjoy themselves and looked at all the cool art. They were in awe by some of the space pictures and different paintings. I am very glad we all got to go together and enjoy it as a family. We came home and hung out got for a bit and a friend came over for a bit and we talked then had pizza. Heather made a special dessert for me for fathers day it was super yummy it had peaches, raspberry, whip cream, pudding, and angel food cake. It was layered in a clear serving bowl. Then heather and i sat around knitting our little man some soakers.

It has been awhile since i have picked up a pair of needles. However I think that I can get one finished hopefully by the end of the week. We will just have to see how it goes and what kind of time I have. I am still looking for jobs. Using good old career builder and newspaper and any help wanted ads I can find. So far no call backs. I am hopeful that something will come my way soon. Have to keep the positive thoughts coming.

The kids are doing well we are trying some new things in the house to make it a little more stream line and more productive with our time. We have also got some pretty cool games planned for them this week. They were very cheap and I think we will all have lots of fun with them. Most of these ideals came from my very smart and beautiful wife. She thought hard about somethings on how to keep the kids busy and came up with some excellent ideas. I will share some with all of you when we start. We don't want to spoil the surprise.

Jace has done very well on his new medication. It looks like he may need to increase a bit however that will be up to the doctor to decide. He has not had any violent out burst since the medications. However his excitement has increased some and he appears to be more of a hall monitor as heather explains it. Like he tries to more of a tattle tail then he was. I sure that will all subside. We now have Pediatricians for all the kids.

That is all I have for today. Will update more when I can.

Sunday, June 19, 2011

updates from the last few days

As most of you have read we finally got the results in. It has been a crazy couple of days. For those of you who haven't read my wife's blog. Here are the results. Eli has Complex 1 , Complex 3 and OXPHOS.  In simple terms Eli has a progressive terminal disease. That right now we are waiting to get a plan of attack to help him.  He also has many deficiencies in his system which isn't helping anything right now. Dr shoffner wants Heather and I to come and discuss the results and what is next. Unfortunately we are not going to be able to do that. So we have Elis pediatrician working with Dr Shoffner and some of the local specialist to put a plan in place to get all of his additional medications. Which there is a lot. The plan of care is going to greatly increased by the time we are done. It has been a long couple of days wrapping our heads around all of this. The report was  69 pages. Some of it was very complicated to read however the important stuff was very clear

It is something we will have to take it day by day. Live life to the fullest because we have no idea how much time we have or when it will get worse. It could be decades, years, months, days, minutes, even seconds.  Right now he has been doing pretty well. So I try to think on the positive side and say when he grows up he will be something great. He is a fighter just like all of the other mito warriors out there. As a father I have to stay strong for our family and just live in the moment.

Will update later we are about to leave for  the  museum so hopefully will have some pictures to put up and a family update.

Positive thoughts to all. And if you haven't smiled yet smile.

Wednesday, June 15, 2011

updates

  Sorry to all. This last week has been crazy. I will do just  a quick update.
 Not happy by it at all. We moved to get eli the help he needed and i found this great job and then out of no where no job. Humph. It is all good though we will make it thru this hurdle that has been put up.

The kids have met up with some kids in the neighborhood.  This is totally making things easier. They love to be outside and hanging out with kids there ages and simular interest. It sounds like they will be meeting lots of kids. Hopefully it will help the summer go by better.


The grandparents and elis last nurse came up for Bens birthday. It was really nice. Friday we had a very yummy supper. It was chicken and mango watermelon salsa. Saturday went out for lunch and hung out for most of the day. Sunday they left to go back to Wichita. We should see them all again on July 4th.



Jace had a doctors appointment and it went well heather really liked the doctor that she got in to. They are trying some other meds with him to see if they can get things under control. The doctor has also diagnost him with some kind of impulse disorder. All the symptoms fit him to a T. So we are trying more positive reinforcement and new meds we should know in about a week if they work.

Eli we got a call and was told that the results were in however his pediatrician doesn't know really what he is looking at. He says that he will be passing along the file to a genetics doctor and his neurologist. Dr. Shoffner wants us to come to atlanta to talk to him in person. The last time a doctor want me to come into their office i was told i was just a month or so away from cancer and i got lucky. So needless to say it doesn't put my mind at ease. We are not sure what we are going to do. We are just taking one step at a time. We will be getting the full report and reviewing it to see if we can make any since of it. We have a friend that has seen this 69 page document before so we are hoping  that she can make heads or tails of all of this information. My fear is that we will have to go to atlanta to get all of the information and understand what lies ahead for our family.

Lucky for us the kids don't understand what is really going on. We will obviously discuss it with them once we know more and what our next steps will be.



Heather and I are just trying to get all this information sorted out and trying to get everything taken care of. We have to figure things out kinda fast so we can get the best care for our little man. Also so we can move forward and deal with all of what is going on.  My post may not be as frequent as before. I am using alot of my time to job hunt and help put where ever I can. You know job hunting is a full time job someone once told me and i can tell you from experience it definitely is.

Smile and stay positive. Right now we could use all the positive thoughts and prayers that we can get.

Thanks to all will update when i can.






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Tuesday, June 7, 2011

Updates

Heather has gotten all of the curtains up. I must say it looks fantastic. My Mrs has been working very hard to get the house looking its best. She employeed the kids yesturday to help out. Looks like they got alot done. I got home and we started the garage and it is definitly coming around. It will take a few days but it will look way nicer than our other garages have in the past. We totally want it to be very useable. Hopefully we will be able to pull one or both of the cars in by the time we are done. It is very hot here so our time out in their will not be alot however the time we are out there will be very productive for sure. That is how we do things when we are together. Last night i got a router and finally set up a home network so we now officially have working internet. It is a great feeling. I didnt realize how important internet was untill we havent had it. It is mainly more for us than anyone but the kids use it for netflix and emily uses it for music. Its pretty crazy right now. Hoping soon things become more "normal". Day by day it seems to be different. Somethings better than others. The kids are still oh my bored as all get out.

Emily is want to get out of the house and do things. We havent had a chance to explore the neighborhood so as of right now we are telling her no. We are hoping one of these days when it cools down to get out and walk. It is very hot. She is reading as always. She is now reading Double Wedding Ring. It is a very good book. Emily should be able to get thru it pretty quickly. She now is excited to have cable so she can watch her favorite shows. She has been getting some down time to herself. I am sure it is not as much as she would like however i know she likes what she gets. Her additude is the same old same old she is almost eleven and acts like she is a teenager. I am sure most of you can relate. She hasnt changed much in the last 3years. She has grown up a bit and matured a bit. however she is still emily we can pretty much tell you how she will react to a situation. I hope the new school does her well and we are able to continue to get the schools to push her a bit and give her the work that she can do. We will just see.

Jace well  i dont know what it is thats in his mind. Why is gets so mean and disobinet. It is just cant keep going on. Him and I seem to duke it out on a regular basis. He isnt perfect for heather by all means but he is worse latley with me. I wish that i could get thru to him that his behavior is not right. He just doesnt listen. Maybe im using the wrong words. Maybe i am saying it in the wrong tone, I dont know. Just wish we were closer. Like a father and son connection. Dont want to replace his dad however i want him to realize what his mother and i have done for him.What things we have given up to give him and the other kids what they want. Hopefully some day that will happen. hopefully some time soon. He is a very smart boy. When he is calm and focused he can do a whole lot. He can be a very loving boy. He can be very helpful when he wants to be I just wish we saw it more.

Benjamin he turns 6 today. He is growing up so fast. I remeber when he was just turning 4. He was such a tiny little boy. I could totally see ben. He hasnt changed alot over the years. He still is a pickey eater. He still has his days even though they appear to be less. I have watched him grow so much in school. He is a very smart little man. He can be lovey when he wants to. He can also be super helpful. He has changed in many ways definitly for the better. Just wish we could get him to eat more consitantly and have a few less mood swings,

Ari oh my gosh she is a hand full. I dont know what is going on but over the last year she has totally gotten worse. All the high volume taking and non stop talking, Wish i was exagerating howerver i am not when i say she talks about 12 hours a day and she is loud. She asks so many questions. Which isnt bad in itself. Its the ones that we have already answered and then she asks again. She is our little princess. Heather and I think its  a hearing issue and that she needs to be tested again. We will be talking to her new Peditrian about hopefully we can get somethings in place. We are also working on PreK for next year.

Eli our little man is now 18 months and a few days. He is doing pretty well. He is still pretty crabby at night. Heather and I talked and we think we will start putting him to bed alittle earlier. It is not fair to let him be so tired and fussy. He has been waking up very early every morning. We dont know why we just wish he would go back to his old schedule of sleeping in untill 8 or so. He is making sounds mostly the same all the time however he is showing how big of a boy he is by trying to get what he wants and chasing after things.

Heather and I are just taking day by day trying to get our house completly situated. She is definitly doing the bulk of it and it is coming along very nicely and impressive. I am so glad to have a women like heather in my life and the kids life. She definitly holds the fort down when i am working and in so many other times. I dont feel that things would be as far done if it wasnt for her. She is the women who makes me smile just to hear her voice or to know she is thinking of me by a text. I know it is kinda sappy but its the way i feel.

Bye all have a wonderful day. Smile if you havent already. Dont forget tomorrow honor Mrs Lucy by doing some act of kindness.

Monday, June 6, 2011

This past weekend

On Friday I got home and Heather Emily , and Jace all went to a play a friend of ours older daughter was in. It was a parody of Shakespeare. They all seemed to enjoy it. I thought it was good for the older two to get a chance to experience that type of performances. They got home and the younger ones were sleeping and the older ones were tired. It was nice to hang out with the younger ones. They mainly just relaxed and watched a little bit of TV and then went to bed. Without not too much troubles.


Saturday.We hung out mainly at the house until about 2pm. We had the cable installation which was a smooth transition until we were told about a promotion that we asked for in the beginning and they told us that they didn't know anything about it and that we needed to talk to the installer about any questions. I was really upset because i spent already over 3hrs on the phone with them. It was just a mess. they will be out on Tuesday hopefully to give us all the things we want. The elecrtricain came over and fixed all of the electrical issues which was really nice, He was very good at his job. He works all the time and does a very good job. I would totally hire him in the future. Now we are just waiting to see if our landlord is gonna fix the plumbing. The landlord seems to not want to fix the issues in the house without pushing so we shall see. After the electrician left we went out and got some errands done. It was super hot. Eli didn't do well. He didn't urinate for almost 20hrs. He just cant handle the heat. We are not really sure what we are gonna do about it. It just really sucks not being able to go out as a family and enjoying things together. It is awfully hard to live each day to the fullest when it is so harmful to him.The nurse came and we just stayed in for the night. We had dinner together and then sat around hanging out with the kids. Then went to bed.


Sunday we went out early in the morning to do some errands. We got breakfast and then to target to finish up on the finishing touches of the house. We were out until about 11am. Eli was doing much better this time. Heather thought to supplement in between his morning off the pump with pedialyte. He did very well. It was a good call by her. Hopefully it will continue to work. Being out as a family is very important to us and our family. We enjoy being together. It is good for Eli too. For him to interact with others and see the world. We got back and did some work got some lunch and made a grocery list. Heather then went to the store for groceries and a Redbox movie for the kids and us to have family movie night we have not had that in awhile. Cant wait to have more of them. We watched Genomeo and Juliet. It was very funny. Good for kids and adults. We also had an interview with a new nurse very polite and i think she will work for the hours we are needing. She has a pretty extensive background in PEDS. Her first day is tomorrow.

This week is all about getting the house finished. Mr Ben turns 6 tomorrow. The grandparents and Paula will be coming up this weekend. Eli has like 6 appointments this week. It will be a busy week.But it will all be worth it the house I feel can be done as long as nothing crazy happens. The grandparents coming up will be good. The kids haven't seen them for a while. Paula being Eli's first nurse she is like family and we all cant wait to see her. I will update when I can this week. Positive thoughts to all hoping this week is uneventful.

Lucy Goose Weber

i didnt know Lucy. However I did hear some pretty amazing things about her. She was a very strong little kiddo who left this world way too early. This is something that my wife recieved and passed it along to me. We will be doing this in honor of Lucy. I think the paying if forward is an excellent idea. To do it in honor of this little girl is something pretty amazing. Thank you to all that will participate and especially to who thought of this great idea.

As you may know, Lucy Weber's 2nd birthday is coming up on June 8, and we would like to honor her in a way that reflects what Lucy did so well, which was bringing out the kindness, compassion, and generosity in people.

One of the things we were constantly amazed at throughout Lucy's journey was how she brought people together that would have never crossed paths had it not been for her and how, after hearing her story or meeting her, people were compelled to go out of their way to do nice things for each other. All of us who were close to Lucy want to make sure her legacy continues, so we are marking her birthday, June 8, as the first annual Lucy's Legacy Day. The idea is basically a "pay it forward" or "random acts of kindness" day. Perhaps you know of someone struggling with an illness in their family or dealing with another type of unfortunate circumstance, and they can be the recipient of your generosity. Maybe there is a neighbor who needs assistance you can offer. Certainly there is someone whose day you could brighten simply with a note or phone call letting them know you are thinking about them. The most impactful acts of kindness may actually be those directed toward a total stranger!

All you need to do to is print a sheet of Lucy's Legacy cards (attached to this email and also available on Lucy's CaringBridge site and the Team Lucy Facebook page), keep them in your purse or wallet, and when you think of Lucy, do something nice for someone and hand them a card. Chances are, the recipient will be compelled to pass along the kindness - and the card! We also encourage you to share your experiences on the Team Lucy Facebook page - it will be fun to see how far we can get this goodwill to spread! Let's celebrate Lucy's birthday by getting tons of cards circulating and making the world a little bit happier in the process.

The first thing you can do to help is SPREAD THE WORD! Please forward this on!

Happy Birthday, Lucy Goose! We hope to make you proud!

www.facebook.com/TeamLucyGoose
www.caringbridge.org/visit/lucyweber

these are the cards to hand out to help with the process of paying it forward. Please feel free to print and honor  Lucy

Lucy's Pay it Forward Cards

Friday, June 3, 2011

the last few days and the weekend to come

Well lets see on Wednesday not much really happened, Eli is still seeming to be really tired. Not really sure whats going on. Usually it is a sign of him getting sick. However no other symptoms so far we are all keeping a close eye on him. Monitoring all of in and outs. Making sure all his vitals are doing well and just overall keeping an eye on him.

Heather has been a busy little penguin. Killing ants, hanging pictures, putting curtains up, and just all around cleaning the house up and trying to keep the children from being really bored. Hopefully Internet and cable will help with their boredom She has done an awesome job so far. We are usually done way before this time. It is bringing the OCD out in us both. However so much has been going on at the house I don't have any bad things to say about it. She has been very busy with nursing and therapies. Lets not forget getting groceries with 4 kids and getting things to make her job easier with all 4 kids. That in itself is a difficult job. It occupies alot of her time. I love her so much she is an amazing women. I am very luck man. The kids are lucky to have a mom who cares so much for them and does all she can to make life the best.

It is hard to be in the position we are currently in. Being with some hard times and hard decisions. Dealing with the landlord and all of problems with maintenance. The kids being bored out of there minds. Getting re situated with our new life. So not easy for any of us right now. It will get better it always does. I am sure that alot of people who move have some similar problems. Just at times it seems like we are stuck at the top of a hill at no place to go. It can be very overwhelming.

Eli had an assessment with TinyK. Heather was really happy with them. They are going to focus on speech. They want to get him an IPAD. They feel that it is best. The push buttons that we have they say he doesn't appear to hear so they don't see how it is benefiting him. They also say what is the difference between picking something on an IPAD and doing it with pictures in a book, It makes perfect since to me and heather. They also will be working on pt. So hopefully with 2 organizations working with him multiple times a week we will start to see the improvements that we would love to see.

The kids just trying to get them all set up for things. You know the basics doctors summer activities to keep them from being so bored. It will keep the sanity in the house. Usually happy kids make a happy family. Not saying give away the barn however got to do somethings that will keep the content. A new area not always the easiest thing to do. There are alot of free things around here to do and some inexpensive things to do. I think we will be trying to do that this weekend. It will be nice to do things together as a family. We will just have to see how the weekend shapes up. You all read my one update for the last weekend. Hopefully no where near as chaos I know you have to have chaos to have order. I just wish chaos would come in a little slower.

 Will update more next week. Have a wonderful weekend to all.

Wednesday, June 1, 2011

yesturday

Yesterday well was better than the day before.

In the morning the new nursing agency called and told us that the nurse we had was sick. So that didn't make the day any easier. Especially since Eli woke up to a bed full of formula. Which we haven't fed the bed in along time. It must of been going on for awhile because his back flow of bile wasn't there at all. So we aren't sure how much he didn't get in feeds.So heather cobanded the med port shut. With the way he has been lately and the extra heat we cant afford to feed the bed. So he was  super clilngy. Heather told me that he didn't seem to be feeling well. His heart rate was up and he hadn't peed in a while. As the day went on he was very tired. He slept for awhile. More than normal. So heather spot checked him thru out the day. She also had a nursing friend listen to his lungs. They were a little gunky however nothing to worry about yet. As the day went on he still didn't pee and we were starting to get worried because no pee means that he is getting pretty sick and that his urinary track is shutting down. Which with the GI shutdown happens every time he gets really sick. So we have to watch both of those very closely. Heather spent the day keeping an eye on our Mr Eli and making sure he was doing well. Keeping me in the loop and we discussed talking to the doctor. Even though we know they probably would tell us to either keep and eye on him or take him to the emergency room. Mostly keep an eye on him. So she did just that.

Heather was getting  the house more organized and finished. She got some curtains up and our organizing boards up. The curtains already are keeping the house cooler and also giving more privacy to the house. It just makes it feel more like a home than a house. The boards oh my. Without them we are definitely not as organized as we would like to be. So now we can get back to seeing our month in advance. Sometimes its a little overwhelming however with us all being close to the doctors we need to be close to it wont be so bad. It definitely is all coming together not as quickly as we would like but its totally coming together. Thank you to my misses for doing all she can and putting the finishing touches on our home. 

The other kids are bored. Of course no surprise. We should have cable hopefully this week at least by next week. Hoping that will ease the boredom ab it with alittle more variety to do. Trying to keep 4 kids busy is not an easy task for one person to do. You would think that with all the things they have to keep them busy they couldn't get bored. Think again. I know it is hard for them being in a new place all together and not being able to go anywhere because of us trying to get everything caught up on and trying to make life "normal" again. We have lots of things in mind for the  kids we just have to get through these days of getting our lives back together again.

Emailed the landlord the things that we need fixed around the house and now just waiting for our repair guy to come over and take care of it.

Eli finally peed this morning so I think that we are out of the woods for now. He also has some new place to do therapy today. He has speech and Physical today. I will let you know how that went.  He also has a new nurse this morning and the agency will be coming also to get paperwork done. We really like this new nurse and her qualifications and experience. She is a RN with many years behind her. We feel she will be an excellent fit for Eli. When he met her the first time he played with her which is something he doesn't do often especially with new people.

Well go to go will update when i can. postive thoughts to all

Tuesday, May 31, 2011

The Good,THe Bad And The Ugly of this past weekend.

Well the title pretty much gives you an ideal of how this weekend went. However I will explain as to what each of these mean.

The good of this weekend: Well the good of this weekend was on Friday all of my family came home. It was very nice to see them. Heather and her dad came with the rest of the stuff from our house. I loaded up all of my things from a friends house that I had been staying at for the last 7 wks. I got home about 4:15 and Heather was interviewing a nurse for Eli. We then had sometime to unpack a few things. We then had supper and got the kids off to bed. We then sat down and watched a movie together and just relaxed a bit. So Friday was just a relaxing day getting things situated for our lives to start a new. It was a  very happy night for me. I got to see all of the kids and start to get things situated and all we could think about was all of us being together at last and spending the next three days together getting the house put together as much as we could.  Heather earlier in the day noticed that the fridge was not holding things on the shelves and in the door. So I guess this was the start of bad because with a big family you can't have only half of a fridge working.


Saturday was a very busy day. We got up early and started to get things unpacked in our room, As the morning went on we had back to back interviews with our nursing agencies. I know we need them however it kinda sucked because it took about 4 1/2 hours to get thru all the interviews. Some we liked and some we weren't totally sold on. We have pretty much made up our decision. So half of our day was gone and the fridge was still not fixed and in the morning there were many other things that just didn't work right or not at all. So we called the landlord and the maintenance guy and waited most of the day and to this day nothing is really taken care of. So i am hoping since the weekend is done things will get finished and we wont have to bother either one of them for a long time.

Sunday here is where the ugly comes in. Heather noticed early in the morning that the house was getting warm. She noticed that the AC was turned off and she turned it back on. Well a few hours later we were noticing that the house wasn't cooling down in fact it was getting very hot. Now to remind all of you our Mr Eli can not handle heat at all he cant regulate his body temperature and gets dehydrated very easily. So as he was sweating and we all were hot and pretty miserable. I contacted the maintenance guy and it took him forever to get over to the house. He first brought  a very small fridge. Like one of those apartment fridges that is good for like four people and was about half the fridge size of what was there. So once he finally got there and was able to look at the AC we had to relocate Eli because of his health issues. The  maintenance guy went and looked at the breakers and turn them off and then on. He then went outside and noticed that the motor and the fan of the AC was completely disconnected from the main unit. So after many hours of talking to the landlord and maintenance guy we finally got someone out to check on it a 8:30 at night. By about 3 i think we had to relocate the kids Emily was having some troubles with her asthma and it just was unbearable. We also lost basically the whole day of unpacking. Which we thought that we might be able to relax on Monday as a family. That so didn't happen. Luckily we have family that we are good friends with that we could stay the night with.

Monday wow. Well it got better i guess. By about 3pm the house was cooler and a new AC was installed. however we had a new nurse and we couldn't do all the things that we would normally do to get them fully up and running on the first day So we weren't totally thrilled by that.We got back to the house and tried to get somethings done. It was so not easy. Went to walmart and got some basic groceries to hold us over and some other things to help bring the house a little more together. We got as much done as we physically could. Heather is at the house today with all the kids hopefully she can motivate them to help out and make her day easier. We will just have to see.

Will give updates when i have them. Positive thoughts to all. Hoping your weekend was a very productive and relaxing one. Honoring our military.

Friday, May 27, 2011

The time is here

The last couple of days have been really busy trying to get the house situated and the important things put together and fixed. We will be together as a family again as of about 4:15 today. I am so excited to see everyone. Being able hug the kids and ask how there day was. Helping out keeping them on track. Watching them as they unpack there stuff and getting there rooms put together. It will be along weekend however I am so looking forward to it. It will be nice being able to have Heather and I working together getting the house situated. It will be our home.It feels like a new start for us as a family. Not needing to worry about how Heather and Eli will get here for doctor appointments. Not having them gone for days. Getting Eli the best care that he can get and its close to our house. Also getting the kids to their specialist. Being able to have some  "normalcy" back in the house for us all. It will be along road to get re situated however i know we can do. We have done it before. Heather is interviewing a nurse today hopefully she likes them and they are a good fit for our family. We then have 4 more tomorrow. It will be super helpful if these ones work out. It so would be nice to have one started on Tuesday so heather can have the help that she needs with Eli. Lately he has been a handful. Our last interviews didn't go so well.
 
 Eli got his wheelchair readjusted yesterday. It didn't fit him quite right. So heather spent about 2 hours yesterday getting it taken care of. I have seen pictures but i cant wait to see it inperson. He totally seems to like it. It will be good for him.

So as of now there isn't much more to say. Positive vibes to all. Hoping my Mrs and the kids have a safe and quick trip. By for now next post should be Tuesday since we don't have Internet at the house just yet.

Wednesday, May 25, 2011

Counting down the days

Well the last few days I have been a busy bee trying to get the house taken care of . Mainly the important stuff. Like sheets and blankets for the beds fixing the door to the garage getting rid of pesky ants putting together the entertainment/ family room. I also have been counting down the days until we are together again. I am totally not sure how other people do it. Everyday i think about my family and how much i am missing whats going on in there lives. The thing is i guess our family has a different dynamic than some. You would think that just seeing heather and Eli just a few days ago would hold me over until i see them again and well it hasn't. It is only basically 3 days until i see everyone. I really hope that it starts to feel like it is going fast. It probably doesn't help that at work i am  so bored. but i do remember at my other job i was anxious almost everyday to be home. Maybe it was because i didn't like it or maybe its just because i missed my family. I really hate missing out on things. 


My tiny man got his wheelchair yesterday and he appears to me that he really likes it. It will be very good for him to be able to interact with people at more of an eye level. Be able to do therapy in it. Be able to play on it. This is going to alot like him with his hearing aides and glasses it will give him a whole different perspective on life. Well i don't have much more to say so here is a couple of pictures that i have of Eli and his wheelchair and Heather and I meeting Mr Groban.





                                               Mr Eli and his wheelchair reading a book



Heather Mr Groban and Me


Monday, May 23, 2011

this past weekend updates

Friday the movers came and heather got them all situated and made sure things were done as well as they can. She interviewed some nurse for Eli . and then we did a alot of  unpacking of the kitchen Friday night. We were pretty busy.

Saturday we got over to the new house and did alittle more unpacking as we waited for another nurse to come and interview. We got thru a few boxes. The rest of the week will be doing as much as i can to get as much done. Saturday night was amazing. I have so many things i could say about Saturday night but amazing is probably the most fitting. Maggie heathers mom got us tickets to see Josh Groban. The local radio station got us back stage passes to meet and great him. The night started off with the meet and great we walked back stage and we just couldn't believe that we were meeting this performer that had helped get us thru so many hospital stays. We would listen to him alot when we were hospitalized. Listening to him just seemed to bring comfort. So we were backstage and it was our turn to have him sign and take a picture with us. I gave him one of Eli's cards and told him how much he meant to our family. Then we went to our seats and listened to his opener EMU  I think this is how it was spelled. Then Josh came out and we listened to him sing many songs just amazing the talent he has and how personable he is. He then comes to the center stage and starts to talk about the next song and what he thought when writing it about his family and friends. And out of no where he talked about our little man meeting us backstage and our 18month son. It was only seconds of a referral however it touched us so deeply. It was such a fitting song for our family i held on to my wife and got pretty emotional. Something that I don't do in public. I just couldn't help my self. Here is the link to the song that he sang and i feel dedicated to Eli and our family. http://youtu.be/XL71Za0Kpqg.  Thank you so much Mr. Groban for making this night such an amazing,emotional, and fun night for us. You really are a fantastic performer. Be sure to know we will be attending again.

We are so blessed to have so many great people in our lives. Our lives have changed so much by all that have touched us. Some in song some in just sending prayers. Some by giving just abit of there time for  food and items that we may need. Even some by giving a meal to those that are taking care of our other 4 children. Thank you all for your support.

You know something Eli has touched so many lives and have had us evaluate our lives differently. We have moved away from family and friends to get him the best help possible. Being a parent isn't always easy however with Eli we have learned to enjoy the small things in life. The small accomplishments that we see and done. It is an emotional ride that we will be on forever. I use a roller coaster as an example. Some days go by so fast and some by so slow we have our high moments and our low moments. It would be nice to get off of this roller coaster, however it is a thrill to be on it. We never know what the next day will bring. Eli has defiantly made it an interesting ride. I know that i learn something from him almost everyday. How strong he is and how much he just pushes on to the next day usually with a smile on his face.

Friday, May 20, 2011

Thursday updates

Moving Day:

Well the moving day didn't go as smooth as we would of hoped.the movers got to our house around  3pm. They immediatly said that it wasn't all gonna fit. Which is a really bad thing . So i called back and forth and talked to the higher ups and got no satisfacion. Heather  kept me updated as much as she could. We both realized that they were right. i personally think they didnt pack it well. They finally got done about 6:30. They will be here in overland park around 12pm.

I am doing pretty good alittle tired and still a little stressed. But thats pretty normal for me. It will be much better once the family moves up here in Tminus 7 days. I started a new scheduel at work. 7 to 4. It is taking me a bit to get used to it. You wouldnt think one hour would make a difference but it does. This is the schedule I wanted since day one. It will work very well for our family. I can be home to help with the cooking and taking care of the kids. Also be able to hang out and have family movie night and game night. I miss having those nights. It will also give heather and I some down time at night to watch our shows together. It will also be easier to find nursing for eli with the hours. I have been going to the house and getting things ready for the movers. This week i will be working on some unpacking.Heather and I will be doing the bulk of it together. We love working together and helping each other out to make our house a home.

Heather seems to be doing better she is still tired and she doesnt have all of her energy back. Hopefully she will get better soon and the meds willl continue to work. Also yesturday as she was puttng in elis car seat that the therapist loaned us she may have broken her thumb. She went to the doctor and they couldnt tell by exam so they sent her to get a xray anfd hopefully will know for sure today. All i can say is it is really swallon and she says it hurts that doesent suprise me looking at it you can tel it hurts. Heather will be with the movers today to get things in the house. She will be helping me with the unpacking today and then when she come back next weekend.

 Emily she was taken out of school again. For not being able to breath well. She went to the doctor and the doctor doubled her steriod and gave her some antibiotics. They also want her to see a pulminologist for her asthma. They think that between her allergies, asthma and the sinus infection it is causing her to have the breathing problems.
Jace seems to be doing well still no symptoms yesturday he wasnt totally happy he forgot his school snack and he was very upset. He had a lorge portion of the morning to get and just didnt. Hopefully that will help him use his time more effectivly.

Benjamin he went with his respite worker to a pottery place to do his own. he choose lightning mcqueen. They said it should be done by next week. He is still enjoying school and recess.

Ariana well she is still our little princess. Still as talkative as always Playing and jsut keeping  it Ari

Eli is still choking and gaging. His meds dont seem to be doing anything it is very fustrating. Many things he used to be able to do he cant anymore and the new stuff he is learning is hard for him. I just hope someone can help us figure out the secretion issue. He is pretty miserable during his episodes. It is totally not fair for my little man to continu e to suffer like this. Somethings gotta give soon. I remeber holding him for the first time and just thinking you are gonna do great things in your life eli. He is a fighter howerver every fighter has battles that are not as easy as some. i just want to get things under control so he can move on and get to do all that he is capable of.

More updates to come.

Thursday, May 19, 2011

this last few days

I am sorry for not updating recently but after reading this post i hope you all will understand.

Friday night i got in about 8:15pm. It was really nice to see the family. Eli and heather still weren't doing any better. In fact they were doing worse. We just thought both were suffering from allergies. Eli continued to drop his stats at night hardly ever staying above 92% O2. Heather was still coughing and feeling miserable. I got up with eli during the night to give her a break and so she could sleep. She didn't sleep real well from what i can recall.
Saturday came and heather wasn't feeling much better in fact it seemed worse than the day before. She was on some antibiotics that just didn't seem to be doing anything. Along with all the other meds that were suggested. Eli decided to make the day eventful by dropping his stats thru out the day. By 4p, we made a descion after getting a hold of the doctor to take him to the emergency room. We got there and they did a chest xray. The doctor wasn't super sold on the the xray however said that it was ok and to just keep an eye on him because he looks ok and the xray was pretty good comparably to all the others he has had and seen. We finally got home about 7pm and got supper and ice cream and heather and i just relaxed after a pretty stressful day. We cleaned out the garage together which seemed to make heather even worse than before.

Sunday came and I was gonna run a load to the new house however heather was struggling and the night before she had a very rough night up most of it. So we called the doctor and she prescribed another antibiotic and breathing treatments due to the fact she was having troubles breathing and had really low energy levels. It was so bad that they strongly suggested for her to come in on Monday and get a chest xray. I decided to take Monday off so i could help heather out with the house and the packing. I am so glad that i did.

So on Monday she went to the doctor and got a xray and sure enough it is what she thought it was pneumonia. Pretty bad case of it. Very little sounds in her right lobe of her lungs. She was in pretty bad shape so I decided to take a day off to let the meds kick in and see how she was doing and she didn't really show alot of improvement. Her energy levels was very low and she still was coughing alot. Eli was still running some low grade fevers and being very clingy. You could tell that he wasn't feeling well. The doc just said its probably allergies. hmm we are not totally sold on it. We are giving his new meds sometime to work. With heather still feeling pretty crummy and not having alot of energy to do much I stayed one more day at home to help out with the house and do what i could to help her feel better. It was along day on Tuesday.We took a load up this day actually it was three loads. the house is so full of boxes. We really didn't have much of a choice due to we were afraid we wouldn't be able to fit everything in the truck.

On Wednesday i left early in the morning so i could get to work i then interview a nurse which totally didn't work out then i went to the house and moved boxes around. Emily got really sick and had to come home from school. She went to the doctors and said her lungs were good and they gave her a steroid and breathing treatments to help with the falling Oxygen and increase HR. The doctors think that it could have something to do with her asthma. I really cant wait for everyone to be better. It is got to be very hard on Heather especially with her not feeling herself. They said it may take up to 10 days for her to feel like her old self. They also want to do a follow up chest xray to make sure that it is all gone and that she wont need a second dose of antibiotics. We will just have to see what happens.

So far i am feeling fine a little tired but that is about it. jace and ben have not had any symptoms yet. Ari was sick for abit a bad cough however the antibiotics that she got seemed to clear it all up, Eli as of today is doing fine still coughing and gaging  but overall he seems to be doing well. He does however have some blisters on his 3 molars he is getting in so that could definitely contribute to is low grade fevers and his fussiness.

Life is just really crazy with the moving people getting sick trying to get everything situated. So can't wait until this move is done things will slowly get back to our normal life. We shall see what today brings.

Friday, May 13, 2011

updates from yersturday

Family
Emily is just being emily she is enjoying school and is a little apprehensive about going to a new school next year i told her it will be fine and it is whats best for out family so we can be together more often. She seems to understand. I think once she gets up here she will meet new people and get to do fun things it will be all worth it for her.

Jace is enjoying school. His new thing is the pink panther cartoon from when most of us were his age. He tells me all about it. how funny it is it kinda cool to hear him explain the story to me. He seems to not care either way if he moves or not.

Benjamin he is a funny little man heather sent me a picture of him laying in one the empty book shelves.He is completely over his what ever it was. He has his good days and bad days. He tells me all about recess all the time he usually tells me that is all he did.

Ari she has been one of the tougher ones lately she got a yellow and a red card all in one day for not listening and not doing what she was told. After the cards were redeemed she seems to be doing better.

Eli just started his new meds and so far i haven't heard anything that would say holy cow some major changes with it. We will just see how it goes it may take a bit of time to see if it will help stop the gaging and the swelling of the ears.

Heather seems to be doing well except for her allergies she still has them pretty good unfortunately. Some days are better than others. She is defiantly doing everything she can to get the house done. She has been packing like a packing queen. I am so happy on the progress she has been making. She is still trucking along with packing the house for the rest of this week and next. She is definitely working very hard. I am very proud of her and the work she has done. I cant wait until i can give her alittle break a well needed break. She is going to knitting tonight. Not alot of time but she totally deserves to take sometime to herself.

Me i'm just working and doing what i can to keep things moving along. Getting things settled at the new house. Making some final arrangements for nursing and moving. I went over to the other house and put some new locks in the house and more light bulbs, screwed in some screws removed nails. I will be going back over there tonight to do some more work. Getting utilities taken care of just odds and ends. Defiantly not hard work however time consuming. It is the least i can do since heather to me has the hardest job of all. Then tomorrow i head home.

Yeah cant wait to be home and seeing the family again it has only been 5 days but it feels way longer. I am just waiting for it all to be over so we can just sit and enjoy each others company. I am sure that everyone else is feeling the same way.

Cool things Corner
Something that heather came across in a magazine www.getjar.com. If you have an android phone, Iphone ,or an I pad this site is pretty cool. I love apps for my phone and they are all free. Some are good and some are not so good. I've tried many apps of the same kind and deleted some that i didn't like.

Well got to go for now will update when i can. Smile if you haven't yet.

Tuesday, May 10, 2011

updates

Yesterday heather and the kids got home early so the kids got to go to school. Heather got to have a much needed bit of time to herself. Sounds like the kids did well last night. Yesterday I went to the house and did an inventory check of what needed to be bought and done. It is surprising what you find that is small but is big enough to make a big difference in a house.

I'm also calling around to all the pharmacies to elis meds taken care of. I was able to find one out of 6 local pharmacies that takes his insurance and compounds. You would think that being a government insurance that these pharmacies would take it. I was wrong most of them said that medicaid doesn't pay for compounding and some said that they don't do it because they don't get reimbursed. I just think its crazy

Well we are on our way getting things arranged for moving next week. All utilities are being switched this week into our name. I'm in contact finalizing the movers. Heather is at home packing away her little heart out. She totally got the short end of the stick. I know she can do it . I will be going home Friday and helping out as much as I can. I have the task of taking care of the garage.



Not much more to say. Just counting down the days 10days left for stuff to be in the house and 17 days for us to be a family again. Sooo can't wait.



Well that's all I have for today.

Monday, May 9, 2011

this past weekend

Wow this past weekend was crazy and very stressful.

  On friday the family got here early so eli could get to his appointment.  Come to find out that eli's ears are not filled with fluid they are swallon due to allergies. His doctor perscribed zyrtec. Hopfully it will it will take care of it,  He so doesnt need much more to hinder his learning. We then went over to the house and looked to see what had been done. The kids were super excited about the house.Somethings got done however there were some issues that needed to be addressed. So i called up the landlord and explained the issue and he assured me that they would be taken care of.  We then went out to dinenr. It was ok. Ben was still not feeling well and just being very difficult. He was repeating himself over and over for something to drink and eat. It was a good thing in a way because it was a struggle for anyone to get him to eat or drink. We then went back to where we were staying and got ourselves situated. It was not an easy night for the kids they were pretty wond and just wouldn't settle down. They finally got to bed and settle down after a bunch of times telling them to knock it off. They finally went to sleep.

Saturday wow craziness again. We all went to a farmstead in overland park. It was very cool the kids seemed to enjoyed it. We went and road horses and walked around  and went into the wigwams and teeps and saw lots of things. It is free for overland park residence. It is very big.They did pretty good there. Ben was still anry and his feet hurt so that didnt make the mood perfect however it wasnt to bad.They were pretty unsettled though. The kids were just out of control afer we got back and in the car that was the worse in the morning all i was trying to do is keep them under control and i must say i wasnt doing a very good job. We got back to the house later than we would normally would, They got lunch then it was rest time. A much need one for that matter. I spent a lot of time trying to fix a toliet. With very little success. The kids got up and once again they werent our kids. Something just went off somewhere. I figured coming to see me and being in someone elses house that they would be on their best behaviour. I guess i was wrong. So wrong that they almost went home on sunday.The night came and they went to bed. It appeared to go alittle smoother.

Sunday came and well. I took the kids back to the farmstead. Heather suggested it on Saturday and thought why not give her a bit of a break from the kids since she is the one with them all the time. Everyone needs a break. I think it is absolutly necessary in order to keep the stress down, So the kids and I went back to the farmstead and went fishing and fed the goats. It was nice just to hang out with them and bound with them. I defintly would like to find some other things that we could do together again. We went over to the house and wrote all the things that needed to be finished from our end. It is a big list however an easy list should only take me about a week to a week and half to do everything. Just because i dont get off untill 5pm everydayt and unfortunaly my OCD will not stay at bay. However it needs to be done and i dont want to make it a big deal with the landlord.Then we got back and we ate some lunch and  the kids relaxed and napped. They also played with the other kids that are in the house we are staying with. It seemed like the day was going better especially after the morning hours. There was still tons of stress going on in the house however it was improving. I spent another hour or so fixing the toliet i thing I finally got it done. Then heather and I made up dinner it was our yummy breakfast casserol and french toast casserol. Then we sat down as a family and watched a movie together. Then off to bed the kids did much better that night. Heather and i cuddled up together in our room and watched greys anatomy. It was super nice.

Monday It was back to work for me and back to wichita for the family. Nothing special for today. The next two weeks are gonna be pretty stressful. I know it will get easier however heather will have to do alot of work. I am really hoping that she can get some help with all the packing. I will be going there this weekend to help as much as i can it wont be much however at this point anything is better than not helping at all.  I will be posting some pics once i figure out how to get them to uploaded.

Have a wonderful day.

Friday, May 6, 2011

thursday updates

Family wise Mr ben is very sick. He spiked a 102. fever. Heather called the doctor and she said to bring him in. He was severely dehydrated and he has strep throat. He was in so much pain. I was talking to heather and you could hear him screaming in pain. It was awful to hear cant even imagine to be right there while he was screaming. It took awhile to get him to tell heather what was hurting. She rushed him to his pediatrician and they started IV fluids right away. He was so bad that he had to be carried. He couldn't walk at all. It is really weird he was talking about monsters and  flashlights. Heather couldn' understand what he meant. Come to find out kids with strep don't always get a sore throat. however they can hallucinate. most of the time when children get it they may not have any sore throat. They may spike a fever. So the doctor gave him a big needle with some penicillin. And told heather he should be feeling better by today and not contagious after today. Heather and I talk and agreed that if needed he would be admitted to CMH here in Kansas City.

Heather is still feeling lousy. I'm not completely sold that it is allergies, She tried some meds last night and didn't appear to help at all.Hopefully she can get into a doc today just to check her out and see if their is anything seriously wrong. She is pretty tired since mr ben woke up in the middle of the night from a nightmare and slept with her. Unfortunately he moves alot when he sleeps/They are all coming up today. Eli has an appointment with his pediatrician today at 3 just to get checked up on and get back on track with the plan of care since there is so much new stuff and to check about his ears and the whole fluid issue. Hope we somethings to move forward.

Me I'm just really anxious to see the whole family. I am hoping ben is feeling better and gets moving soon so he can be with everyone too. I'm at work still keying information into our system. Hopefully next week we will start making some calls. Yesterday i got to talk to the newest hire class about what i do and how to help our customers while we are on the phone. I was so in my element that is what i enjoy the most is training and helping to develop people for their jobs. I hope i get to do it some more. We will just have to see.

Will have more information as I get more. Please send your thoughts and prayers for ben to have a speedy recovery and heather gets to feeling better.

Thursday, May 5, 2011

The last couple of days

Well the misses took eli to his appointments. Wish i could of been there to hear all the new things they want to do. From the sounds of it they told the mrs alot of the things we already knew. Kinda fustrating really.

The nuerologist said that the nuerolgical could also be due to the mitochondrial diesease since there is mitiochondria that is with the nuerons. It is very interesting .He also explained to heather what the levocarnitine does. It is supposed to help with the mitochondiral produce more energy. Which is a good thing. He told her that he doesnt know if its working or not but it wont hurt him to be on it. 
    
They also saw the pulminologist and she wasn't very informative and wasn't sure what to do. She did however agree that he is chocking on is own secreations and that it is because of his hypotonia, weak swallow, oral aversion, and tracheal laryengal malaysia working against him to make it  harder for him to swallow.  She perscribed a medicine to possibly help inprove the situation. I really hope so i may not see him much but it bothers me to see my little man panic and choke and cough. It is also not easy on the rest of the family.
 
He also saw the feeding clinc and he didnt do well there. She experienced elis chocking episode and documented it. Which is defintly a plus. However he didnt take any bits. She said the way to help him with his oral avesions is intense feeding therapy but with all the chocking episode he cant do it. They also went to the seating clinic and that didnt go as well as we would of like someone came in and was trying to take complete control and change elis wheel chair. Which is totally not the one we wanted. Luckily our insurance is already taking care of the first wheelchair and the company in wichita has called heateher and said it is all a go and we should have it by the middle of May .Super yeah for that. Its one less battle we have to fight.

Eli also saw his Ear doctor and she thinks that there is fluid in his ears because he failed his hearing check up with the tympanogram. He is going to see his peditritian on Friday to check on his ears. They also fitted him with new ear molds. Cant wait for those to come in so he can be more comfortable and fit better.
Dermatology they think they know what it is they just want to see him when he has it. So they can say for sure.

I talked to the kids last night they seemed to be doing well. Emily is enjoying school. She has a special author coming to school today and Emily and Jace get to dress up in a friendly monster outfit or mix matched clothes. It should be fun for them.  Jace is jace he likes pink panther and his nintendo. Ben is not feeling so well he has had  a temp of 102. The good thing is he doesn't have anyother symptoms. So hopefully today it will break. Heather has been pushing fluids and making him some yummy pear applesauce. Ari well she is just ari. Mrs talkative and mrs princess.

 Heather she has been fighting allergies for the last few days.It is the worse that i have ever seen from her. I really hate seening her this miserable. Hopefully she can get some meds to help out. She will hopefully be coming back to KC tomorrow if all goes well.

It will be really nice to have everyone together for mothers day. I know there is a possibilty that we might not with all the strange things going thru the house. My self im ok so far physically feeling well. Alittle tired but doing well.
Moving wow is a pain. I have been calling for two days trying to arrange to get movers. Waiting for some call backs to get estimates. I went to the house yesturday and there was no more progress made. I will be going again tonight and if none is made i will be calling the landlord. He seems like a nice guy so im sure he wont be thrilled if things arent being done. Only about 3weeks until the kids are done with school. Hopefully we will have all of out stuff moved in by then. We will just have to see.

Tuesday, May 3, 2011

this past weekend

This past weekend has been a roller coaster ride. Friday night heather came into town and we went and looked at the house i mentioned in the previous post. It was in rough shape however they assured us everything would be done before our date of move in. We stayed up until about 11pm. Talking to our friends and just hanging out it was really nice just to relax and not have really any worries.  About 1:30 eli's stats dropped and his monitor went off. I got up and checked on him and realized he was wet. I picked him up and realized that his gj had completely came out. I woke heather the rest of the way and i was pretty panicky. I asked if she packed a spare and she said no so i stuck my finger in the whole for about 15 seconds and looked around at our friends house to see if they had any laying around no luck. We had to wake them to get some extra help. They got up and found that they had an extra set because there daughter has a gj. We tried to put it in and just couldn't get it. We asked the RN at the house which is one of our friends lucky for us to see if she could it and she did. Heather called the hospital and they told us to come in. They had us sitting around basically for almost 4 hours and then told us to go home and come back because there wasn't anyone that could put it in until 8am. So wish they would of told us that. Would of been super nice to get alittle more sleep. We then went and signed papers for the house. We then helped out at our friends house with her garage sale. It was nice to sit for a bit. We then went around and checked out the are that night.

Sunday we had kinda a lazy day we were still so tired. Heather and Eli napped. I finished a book i have been trying to finish for a long time. I was finally able to do it now on to one of heathers other favorites. Her most favorite Double Wedding Ring. She has great taste in books. So far every book that she has recommended have been fantastic. Before we went out eli decided to try stairs didn'tAs the day went we just kinda hung out until the evening. Then the evening came and heather and i went out to a very nice restaurant. We had a fantastic time just US and i love it when we can just have US sometime. It was quite and very relaxing night with good food and very romantic setting. This was 100% her idea she is very smart like that. She always seems to surprise me with her thoughtfulness. I am always thinking of things that can top hers. I guess it is that competitive side of me. Or maybe its just being a man who wants to do special things and not always sure what to do and wants  to make it really good.

Monday i went back to work. Not an always exciting job we are currently doing data entry at this point however will be doing some calls soon. yeah i love interacting with people. Heather and I went to the house afterwards and there has been some very nice progress on the house. Lot of new fresh paint. We then cooked dinner together which as i mentioned before i totally enjoy doing. We then sat around with our friends and watched a movie and talked and played a game on our phones called.Words with Friends very fun. It is on the android market. It was nice and relaxing.

Today more appointments for our tiny. Will update when i can. Many thanks and positivity to all.

updates for the last 3 wks

So much has happend in the last 3 weeks. First i must apologize for not posting really anything. It is pretty hard to post much  directly from the phone. I will try to do better now that i have access to a computer pretty much daily

Ok here is an overview of the last 3 weeks: WORK
  I started work. went through 2 weeks of training. Got on the floor last week and started the begining of my job. I am now waiting for the next part making calls. I cant wait data entry is very tedious and boring. we should be making some outbound calls by the end of the week. We are doing mock calls and role playing to get the script down to make sure we are helping our customers the best we can, I don't like to roleplay however it is very helpful to get input on how you can word things and better take care of our customers.

FAMILY:

About 3 weeeks ago Heather had a suggestion about taking a train home to suprise the kids. It was an excellent idea. Took a train from Kansas City to Newton. This train goes all over the place as far as california. I left about 10:30 pm and got to newton about 2:30am. It was an interestiong experience. I have never been on a train before. I liked it I would totally do it again.  That weekend was very nice. Heather woke up and met me at the door. I was very happy to see her. We hugged it was such a warm and very need one. We went to bed and got up the next morning. Heather saw a big spider and i came out to kill it. Then we went downstairs to see the boys. Heather went first. I came up behind her and said boys. They were very suprised and then the girls came down to see what was going on. The kids were super happy to me as i was super happy to see them. It was a short visit becaues Eli had an appointment that monday. We left saturday to go look at houses. Heather went back on Tuesday. It was hard to know that she was leaving. Then i came up the following weekend. It was a rough drive my car decided to not put any ac out and i couldn't  put down the windows. Pulled over and got air for the tire and made it in alittle later than i would of liked. The weekend was fun.  We did alot together we hung out on saturday. We  played wii and watched tv.It was really nice. heather and I cooked a fantastic dinner together. It was a garlic crusted chicken with potaoes, carrots, fresh green beans.It had a super yummy sauce with it. We also made a very yummy dessert with rasberries and chocalat. I so miss those days when we are able to spend that time in the kitchen together. I love helping with meals. It gives us a different type of quality time that I feel is unique and special.

We then spent sunday at church and went out with heathers parents to a resturant for brunch. It was very nice to hang out as a family and just relax. We did easter and the inlaws house then we went back to our house and did easter their. It was super interesting ideal from heather. We thought thru multiple ideas and she thought of boxes. So we made lots of  boxes and put them along with envelopes with eggs all around. It was very cool the kids totally enjoyed it. After clean up we did supper. I was gonna go back to KC however my tire was flat.  I had to call into work and let them know i wasn't gonna be able to be in since there was no tire place open on easter sunday. It was nice to be home for an extra day. I didn't like missing work though. I'm pretty lucky that my work is very understanding at this point. So i went late on monday. I hung out with the mrs during the day. I helped clean up the house abit and we got some errands done. It was hard to leave again. I just wanted it to be over with and be home with my family for longer than i have been. It's rough on all of us. It is different for each one of us. I feel it is the hardest on heather and I because we were so used to being around each other so much and spending the time together. I just don't like it. I know that this is the best option for our family to be together  and get the best care possible.

HOUSE Looking:

Wow house looking was a mess heather and I located over 30 properties. Let me tell you it was rough getting call backs, recieving e-mails, trying to find the houses. Between heather and I we looked at about 10 houses. Some were tiny for the price some were in areas that were awful and slightly scary some were alittle out of our price range. Then we saw two that were in our range and good size. On both of them it took along time to get intouch to see if we qualified to rent. They have high expectations on some of these house. We have been looking around all over all the way up to 45 minutes away. Not something we wanted to do but we know we have to do what we have to do. We found a house that is in the neighborhood that we wanted good schools enough room for all of us within our price range overall we are pretty happy with our choices. I will put picturse when we have them. We are just waiting for them to fix somethings in the house before we start to move in.

Me i'm just me. Still alittle stressed becaues there is so much stuff going on. Can't wait untill everything comes together and we are all together as a family again. Alittle normalcy in our lives would be great. my meds are doing well for me. Not having to many issues with them. Which is a good thing it has made things alittle easier. All i can say is that i'm missing my family every second of the day they cross my mind. Just hearing the kids.makes me happy and sad all at the same time. Just hearing heathers voice puts a smile on my face and lets me know that everything will be alright just is gonna take time .
Positive vibes and thoughts to all.

Thursday, April 14, 2011

Wednesday

Day three of the job got a new trainer. She is very good. This job is slightly overwhelming. There is so much to learn. Called the house emily and jace got into trouble tonight. The didnt come home when they were supposed to. Humph just wish they would use there watch and get home on time. And just do there chores and help out more. Jace got to pull a green card. He helped out alot yesturday with house work and doing his chores. Emily had her state assesments. She says she is doing well at school. Ben told me that he had recess and that he is being a good boy. Ari is ari not much changes with ari. She has been taking,naps lately which I think is a good thing. Eli my little man heather called me on video chat so I could see him,he is my handsome little man. Heather told me he trying to pull hinself up on everything. He is trying to be such a big boy. Everytime I talk to the family I miss them even more. I cant imagine how it must be for them. I love video chat it is alittle rough on video and sound however it is so nice to see everyone. It is so cute what eli does with the phone he puts his hands and head on it like im there with him. He even made some noises as if he was talking to me. Some nights are harder than others not sure why but they are.

I miss being home. Hanging out with heather playing wii in the afternoon just relaxing. Staying up at night watching out shows together. That nice warm feeling when you curl up next to the person you love so very much. The security you feel and the warmth you feel when you look into there eyes and know what they are feeling. I know it sounds kinda sappy but im not a normal guy I am intouch with how I feel. I tell the truth on how I feel. Heather helps me to be me. Peace out sleep well. I may have forgot things but life has been pretty crazy cant wait untill this rollercoaster ride slows down just a bit.

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The past three days

Sunday heather and I went shopping for some basics for my trip. She thought of all the things that I wouldnt of. Scissors, nail clippers, cd player with clock radio. She helped me pack my things. We packed up some of the meals that we made together. It was of the hardest days of my life. Seeing the tears, feeling the raw emotions, getting teary eyed myself. Knowing how much I would miss them and how much they would miss me. I know it will be only seven weeks but this is the longest time that I have been away from them. I love them so much. I know in the long run it will be the best but it's not easy knowing the hardships that lie ahead

Monday my first day at work. It was different but a nice change in the type of work that om used to. I work 8 to 5 monday thru friday so far no weekends. This will be very nice once the family is back together. I went to see a house and it was ok not exactly what we are looking for. Talked to the kids tonight. They seemed to be doing ok. They all miss me . That is to be expected . I hope it settles down at the house. Sounds like things are alittle crazy there.

Tuesday day two of the job. Still going well. Learning lots of stuff. Hopefully these 2 weeks of training go by fast. Talked to the family tonight. Looks like ben got into trouble and the rest of the kids are out of control. I told them that they need to listen to their mom and help out in the house it would be better for all if they get their chores done. And do as there told so they dont get a red or yellow cards. I thought I got thru to them. Emily got a duet in her up coming school play. I am so happy to hear that she got what.she wanted. It just stinks that I won't be able to be there. Jace says school is going well he didnt like his substitute teacher. Otherwise it seems to doing ok. Ben told me he went to recess. And thats what he did all day. Ari is ari. She still is talking loud as she can. Eli had been very tired ever since the atllant trip. He is still gaging I so hope that the ph probe next week tells us something.

Heather Is doing as good as she can. I know things arent easy especially being one adult with five kids. I miss her very much we talk as much as we can however I just want to give her a big hug and hold her. Just to see her smile. She is currently working on a really cool project. I cant wait to see it conplete.Sounds like she has made some more meals. They sounds super yummy. Cant wait to eat them. It always reminds me of home.I cant wait to be home.

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