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Monday, June 20, 2011

Fathers Day

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

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

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

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

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

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

Sunday, June 19, 2011

updates from the last few days

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

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

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

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

Wednesday, June 15, 2011

updates

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

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


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



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

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

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



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

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

Thanks to all will update when i can.






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Tuesday, June 7, 2011

Updates

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

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

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

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

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

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

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

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

Monday, June 6, 2011

This past weekend

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


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


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

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

Lucy Goose Weber

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

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

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

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

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

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

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

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

Lucy's Pay it Forward Cards

Friday, June 3, 2011

the last few days and the weekend to come

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

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

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

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

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

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

Wednesday, June 1, 2011

yesturday

Yesterday well was better than the day before.

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

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

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

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

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

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