Friday, February 24, 2012

two week update

Alot has happend in the last two weeks.

Emily did very well at her concert. It was about an hour and half event. It had all the fifth graders from all the schools. They were honoring heroes. The organization honored a local hero that has been helping the local community for over 40years. I thought it was pretty cool. Emily sang with 35 other students one from each school. There was about 2000 people there. She did excellent. I am very proud of her being picked.

Jace is doing well no real issues with him. He is enjoying the outdoors when he can. School is going well for him and he seems to be enjoying it.

Benjamin well he is a mess. He is all over the place. Not listening at home or school. Stealing things, major behavior issues. We are in the works to try to get some help. It is just not easy his main doctor is gone for up to 6 months. His new doctor can't do anything with meds. His other doctors that can are very difficult to get a hold of and get in. We have is case manager working on somethings for us so we shall see. He also has a helper in the house now to help control some of the behavior issues and get him some one on one time to help release some of his built up energy. We shall see if we see improvement.

Ari she went to the doctors to get her hearing checked and the say all is good. However the speech therapist says that she has a phonology articulation disorder. She wants to see her atleast 45minutes a week. We are starting the process to get the school to recognize that there is an issue and for them to take the lead with therapy.

Eli well his blood sugar is pretty much all of the place. We don't know why. Doctors are looking into something on his pancreas. They are doing some test today and lab work. I hope they can figure out whats going on. If they are considering TPN. I am not super thrilled about it. Right now he can't handle really leaving the house for any extensive amount of time. If it is the only thing that helps him live life to the fullest then I guess that's what has to happen.

Me I am doing ok started to gain some weight. Still not where I would like to be. I know it will take time so I have to be ok with it for now. We started some new things in the house to help lower the stress. Which are new ways of handling the house work and the kids behaviors. We have gotten super organized and I am very pleased with it. It is totally helping keeping up with the disorganization we had. We also started doing a different for us house cleaning. So far it has definitively helps make the work quicker and easier to maintain. The reward and chip system has worked so far for most. Ben is the only one that doesn't seem to really care. However I feel that it is better than what we were doing it.

Gotta go hope you have a great day .

"The mind is like a fertile garden in which anything that is planted, flowers or weeds will grow ." BL

Wednesday, February 8, 2012

two week update

In the last 2 weeks many things have happened. Here is an overview:

Eli's new nutritionist wants to change him over to a new formula called peptamen with fiber. Don't know a whole lot about it but some of the ingredients are concerning. They also want to increase his fluids an additional 80ml. To some that may not seem like alot however he is currently getting 270 of free water and this would bring him up to 350ml in a 24hr day. They also think he is inpacted and is ordering a KUB Xray of the kidneys ureters and the bladder to confirm there suspicions or change there plan of attack. Personally i don't think he does but I am not a doctor. So we shall see. They also want us to increase his amount of cornstarch. So far we have increased it little by little and have put it in to his whole day he is doing very well with it so far. Today is eli's tuberversary. 2yrs ago today my little man had a surgery that allows him to live. It is very real thinking that he is here because of his tubie. We will be celebrating this occasion tonight with our family and his nurse. He will have his leapfrog cake and we will be making a cake so we can all celebrate together. It is a little hard for me to look back at the journey that we have been on this last two years. All the things that could of happened and has happened. I only can hope that this year will not bring too much but only time will tell. You know eli he only does things big. On a positive note eli has learned help and he is vocalizing by squawking and letting us know he isn't happy or he needs something. We are pushing more signs with him and starting to use a program to help him tell us what he wants. This will be a slow process but i think he will do well he is a very smart little man.

Ari she is getting ready for her 5th birthday. She has invited her entire class. She is super excited to turn 5. She has so many ideals on what she wants. Mainly princess things and anything purple pink.

Ben wow what can I say he has been just out of control. School is having issues with him stealing kids stuff and hiding it in his desk. Behavior at school and home has just been crazy. Stimming not sitting down screaming and just being an antagonist. We have no ideal whats going on no changes that would effect him at the house. We are looking getting a helper for after school. The helper would help him get home work done and help get rid of some of his extra energy. We meet today to see what we think.

Jace he is doing pretty good he has more good days lately then bad. He is enjoying school and he is getting really good at math.

Emily she is getting ready for a district choir. I am super excited to hear her sing. She is also contemplating being in the school talent show. She is torn between a couple of songs. She got classes to help her read. I think they look sharp on her and hopefully they will help her with some of the blurriness that she is having.

Myself I am doing pretty good health wise. Still no real weight gain. I am trying not to OCD over it but it is not easy. I went from weighing every couple of days to just once a week. I have started a new knitting project it is a turtle and a frog that are reversible. Work on it is slow but i am getting it done.

We as a family have started church two weeks ago. It is called universal unitarian church shawnee mission. It is an amazing church. I am very pleased to be in an organization that has the same views and beliefs that i have.

Well have to go for now. Smile if you haven't today.

Monday, January 23, 2012


I am very proud of my wife for expressing herself and putting herself out there. It has inspired me to do the same. It hasn't got much easier this year. Honestly I think this year is the hardest so far. As days go by its harder and harder to want the day to start. Yes I am depressed,stressed and just plain exhausted. I just wish that i could make things better for my whole family. Make eli better so the amount of angst would be less. Get some people locally to hang out with. I used go out for hours and just hangout with random people. I could call people and people would call me and we would just talk. That doesn't happen anymore. It hasn't for a very long time. At first it wasn't such a big deal as time goes by it gets worse. I don't know i just hope it gets better for all of us. This funk of ours just sucks. Gotta figure out how. Day by day. Minute by minute. It is a rough journey.

Today we started some new things in the house. We got up and started a new exercise program. So far I feel that it is so much better than the old one. I can totally feel it. Maybe its because I am so out of shape.However I don't care the reason I just want to see the results. I know I can feel them. I also have started doing my protein drinks again. I am loosing a lot of weight again. No matter what i do I can't gain to a healthy weight. I hope it works. My fear is that it may not. A few years ago I was at a weight of 103 and my healthy weight is about 135. I am about 114 lbs. I am going to try it for a couple of weeks before changing anything. Heather has been very supportive in this journey. She knows how upsetting it is for me. We are also putting in place some new ways of handling behavior issues in the house. So far it seems like it is working. Will keep you updated.

If you haven't yet try to smile and find something positive today. I have.

Monday, January 16, 2012

A year in review

Holy cow this year has flown by so quickly. I started to think of all the things that have happend in the the last 12 months and what I want to do differently in the new year.

Well in January Eli ended up in the hospital and got a port. Heather and I got married. The happiest day of my life. So many people helped make it a very enjoyable day. Heather looked so beautiful in her dress and I got to have all the things that I wanted in a wedding. it was one of the few things that the hospital was able to help out with that was positive. Then we had a stent at CMH for eli. He nearly died. So January was a roller coaster of emotions.

February Ari turned 4.Kids were really sick. Eli was still in the hospital got out around the 14th. Trips back and forth to KC for more specialist.

March came test results for me. I was diagnosed with IBS GERD and RA super awesome. We also finished up the planning for eli's trip to atlanta. It was an exhausting month and very emotional.

April wow so many tests and so much to get organized. We went to Atlanta and met with the leading dr of mito. Very nice guy. Very rough to see our tiny man go thru all of this. Eli struggled on the plane and we almost got grounded and had to find another way. Since that experience he has been grounded no more flying for eli. I got a job moved away from my family. It was the hardest things i have ever done. I know that it was the right thing but totally wasnt easy. We made that decision for mr E.

May Heather and the family started to get all done for moving at the end of the month. We got to see Josh Groban. It was an amazing experience. We got to talked him and he talked about eli before a song. It was very sad to hear. The song was awake.

June ben turned 6. We got the results of our trip to atlanta. It was very surreal. We were pretty sure that he had it but seeing it in print was very over whelming. More job interviews. No success. Very disappointing. Kids had VBS and Emily had girl scouts camp. She had alot of fun.

july another admit for eli for low blood sugar. stress and more stress. It gets very overwhelming to have to deal with. No job was getting very frustrating no finding something. I remember it was wearing really thin. heather started a job helping with moving. I remember thinking i am glad she was able to find something to help out. Wish i could.

august Jaces 8th birthday. More test for eli nuero and mri. Gotta love doctor appointments. Also the kids first days at school at their new school. we start ti eat vegan. We found out that ben is allergic to egg dairy and gluten.

September this month was mito walk work. We spent most of the month getting prepared for the mito walk. We handmade all of our shirts and had a great turn out with all of our friends.

October i turned 35 and emily turned 11. We had a garage sale and raised some money for the mdf. not much happend this month. Eli had a few moments were he didnt feel good. But for the most part did pretty well.

November good old thanksgiving, eli there was many calls and changes. We went to wichita for the holiday. It was very different since we are vegan. We had a very good meal. We cooked all day. Very exhausting.

December was christmas. It was very stressful and very interesting. We had family come up from wichita. It was nice to see them. Eli got really sick and ended up in the hospital

As you can tell life last year was and interesting and stressful. Obviously this was a brief overview of the year. This year i have some resolutions that you would think would be easy to meet and do however with our busy life it may be easier said than done.


1 Have more fun. Do more with the family that is fun. Have family movie days or nights. Game day or nights. Family is important and I feel i have done a pretty good job with the kids just not as much fun as i think i could do.

2.Take more of my wife's advice. She is a very smart person and when I listen and take her advice things run smoother. I am less stressed and things get done.

3.Take some downtime for myself. This is a hard one however Heather tells me all the time that I need to do it. I am good at telling others to do it but not so much for myself.

4. Reconnect with people in my life that have been away to long. Thanks to Heather I have started to get reconnected with my mom. It will be a slow and steady process however I miss my family and friends.

5. Find some simple pleasures in life. I am not always wanting simple things. I get bored easily. I have to take what I can get because sometimes there just isn't enough time to do more. There is one that I love doing and I hope to get more of it. Being with Heather just hanging out. Playing a game,watching tv,talking, knitting or all of these things combined.

6.Finally blog and use facebook more. There are so many people out there who follow our journey and want more information. There are some that are not on Heather's list but on mine. Everyone deserves to be kept up on whats going on .

What are your resolutions? Have a happy new year

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.