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
Friday, February 24, 2012
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.
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
LIFE
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.
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.
Resolutions:
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
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.
Resolutions:
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
'
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.
'
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.
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.
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
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
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