July 4th 2009

One year ago today, we made a huge move to Houston Tx to try to better Landon's life. Little did we know that we would then spend the entire year in the hospital. It has been a hard year for us. A year ago, Landon was much more stable than he was last year. I have seen the progression of his disease right before my eyes. I think i got this false hope that maybe the dr's in hosuton could cure him, even though i knew they couldn't i had to believe they could, or at least make him better. At the same time, i know that Landon is very stable right now. There is no doubt in my mind Landon would not be alive had we stayed in Missouri.

Today though Landon has survived 22 Central Line infections. 2 MRSA pneumonias, many aspiration pneumonias, and he has suprassed his survival that noone every expected. Landon Blake Weber is a true miracle. He has a story to tell. Landon has become an inspiration to so many people. James and i are so lucky to be his parents.

End of the Path

Yesterday we talked with several drs regarding Landon's care. Landon is having 2 surgeries. These surgeries are the end of the line for us. If these surgeries don't help Landon have more GI function then we will be at the end, and Landon will continue only on TPN and Lipids. Landon's Liver does not handle this well, so i am not sure what will happen. This is so hard for me to swallow. But at the same time, i feel like the dr's will stop torturing him. I have agreed to these 2 surgeries as a last resort to help him, but after this if things don't help him, then we are done and we will set a pallative care plan in place for him, and just let him be a little boy for the remainder of his time .

I was am ok with this, but at the same time it is totally scaring the crap out of me, and i just can't imagine there not being anything to help him. It just isn't fair. I don't understand why this disease has to be so awful and take something like his GI system away from him. So, with that said, hopefully these surgeries will be the miracle for us. I will continue to believe that it will until Landon shows me otherwise.

Ok, i need to get back to doing laundry and packing for our hospital stay!

The world Around me

Hapy Wednesday everyone! I have quite a bit to update on, but first the Weight los...

BLAH! that's all i can say. It's so hard to lose the weight but it sure isn't easy to gain it! HA! However, yesterday for the first time in a year i put on my rollerblades and took to the streets with Tyler, my 10 year old! What fun , but holy smokes it nearly killed me. Sadly, i only made it around the block one time before i was done. Although i have done pretty good, my darling husband just had to bring home that darn milk shake last night, so i hang my head in shame when i say i drank it all! I have managed to lose 1 pound though. So, i suppose that is better than nothing. Today i will spend cleaning and getting things around the house organized so hopefully that will be a little calorie burning. How are you doing??? I wanna hear all about your journey of weight loss. (Nancy- i see you tried to post on the guest book here, if you look closely under the update you will see a guest book comment link. )

My Mom, my sister, and My nephew Jake are coming in 6 days!! I absolutely cannot wait. I have waited almsot 6 months to really get to see them and spend time with them! ANd though it is really really really really hot in Houston, Tx we are going to find lots of indoor things to do and hang out at home. We were going to go to the water park but i think it is just entirely too hot for that right now. Landon and Jacob will have a blast because They are both close in age.

Well, i suppose i need to get back to cleaning, and organizing while the boys are playing nicely together. I will update again soon! thanks for keeping up with me on here!

Life goes on!

Life continues on the homefront! We love being at home. Probably tomorrow or Tuesday we will go in to have Landon's picc line changed out, which will mean that we should only have to stay overnight and be out the next morning!

As for me, i have spent the last week trying to get things organized at home! Today i am on a cleaning spree. I decided i better eat breakfast, and why would i need that??? Because i decided that i needed to lose about 25 pounds , so this morning i decided was a fine time to start. I hate my body where it is now, but living in a hospital does not allow for weight loss! I gained most my weight over the last year int he hospital. So, i go and buy these 90 calorie special K bars. I eat one... i mean seriously do they expect you to get full on that???? YEA RIGHT! But, i am drinking water hoping and praying it will hold me over! Having 3 boys in the house does not call for healthy snacks. If you have a 6 year old and a 10 year old boy you know they like the good stuff... like Lucky CHarms cereal, or chocolate chip cookies... i mean seriously what boy wants to eat a salad or baked potato for lunch???? Ahh the joys of being overweight!

Anyway, today begins my new journey to losing 25 pounds. Anyone else care to join me??
I supposed today my cleaning this house will be my workout for today! LOL!

hae a great sunday everyone!

On the home front

We have now been home for 3 days! Gosh it feels so good! But, you know i find myself overly paranoid just waiting for something to happen. When will the day come when i can relax? I think it's worse because i know that my Mom, Sister, and nephew are coming to visit for a week , in just 11 days and i am so fearful that he will get sick right before they come. I know i cannot help it, but i just want to be able to enjoy them at home all together. I havent seen them since christmas ! I did get to go visit for just a few days in March but once again landon got sick and we didn't get to stay.

Things are going great though. I have been praying alot over the last few days about a big decision we need to make in landon's care. A surgery that could either fix his gi issues or not fix them. But, it's really hard to know if it's the right decision or not.

I think tonight we are going to maybe take the boys over to a local strip mall center that has the sprinklers and Let Braden play in the fountains they have there. Maybe i can get some good photos, or maybe i can attempt to pretend like i can take good photos. HA!

Ok everyone have a great evening, and look for another post from me in the next few days!

Am I really getting Old?

So, Tyler my 10 year old comes up to me last night while we were watching a movie a says :

"Mom, next time you go shopping can you buy me some boxers"? I reply "sure, are you getting tired of sleeping in your regular shorts" He replies: " UH NO MOM i want to wear them as underwear. I have to lie to my friends at school now that im wearing boxers because its the cool thing to wear, and im tired of wearing TIGHTY WIGHTIS"

I started cracking up, but at that very moment i realized i really must be getting old. That is not something i ever expected him to tell me.

Of course we had the conversation too that he would NOT be allowed to wear boxers where they are seen under the shorts. That his clothes are meant to FIT and not fall off of him! One of my worst fears is to see him walking around with his shorts down to his ankles!!!!


AHHH the joys of parenthood!

The Hospital World

I never thought in a million years that i would learn how to live in such a small hospital room for so long. Back in July 2008 Landon got admitted for the long haul. This bench that i am currently sitting on typing this, is the bench i have come to call my bed. If i am lucky and Landon's body cooperated we will get back home today . The reason for this mornings post though is i receive probably 30 emails a day , and in some of those i have received one recurring question over the last 8 months that i have simply avoided answering because i just didn't want to really think about it. That question is "what is Landon's long term prognosis" While i don't have the answer to that, i find myself asking that question from time to time to myself. For the first time a few days ago, i actually thought we have a chance at a long life with him. Then we got admitted for what we "thought" was just a blood transfusion , that ended up being a stress reaction on the body to feeding his intestines. At that moment yesterday i realized things weren't going as well as my "fairytale" idealism thought. It completely stressed his body out to a point that it was making him sick. His body is just stressed over something that should be so simple. That scares me. But, through this journey that Landon has put our family on, i still tell you that no matter what happens to Landon , and when it happens, we are so thankful to have gotten the last 4 years with him. He has taught our family the true meaning of Love, commitment, hope, faith. Landon has personally made my faith alot stronger, and made mre realize that just because we cannot go to church to celebrate "The King" and honor the "The King" that i can still do both of those things from this hospital room, or from my own living room. So, back to my question... i don't know what his prognosis is, but we don't focus on that, we focus on today. And today he is alive, breathing, playing, happy. That is what matters today.

My life

Life around here is never UNEVENTFUL. However in the last few days, it actually has't been tooo eventful. I find myself not knowing what to do with Landon feeling great. I love it, but i am so used to having my guard up, and waiting for that next fever, that i don't know how to go back to being a semi normal mom. You know the normal things i used to do , like cleaning the kitchen, the living room, making dinner, going grocery shopping... The simple things. I find myself walking in circles all through the house wondering where to start, or what to really do. Surely i will get in the groove again though.

Tonight, i thought i would post some pictures! how about that??!!!
Meet Braden ! He turned 6 on Tuesday!



This is Braden and Landon enjoying their new play set outside!


Big Brother Tyler and Landon at the Space Center!

Landon and his precious smile!


And this my friends are just a few pictures of my boys!!!!

Reasoning

Sometimes life isn't fair. We all have those days. Yesterday, i think for me it really hit me how unfair Landon's life is. Yet he doesn't complain about it. He deals with it like it's no big deal at all.
My reason for this post, is yesterday the two older boys went to play on the big huge play area at Kennedy Space Center, and Landon was in his wheel chair, just begging to go in. A central line, a g-tube draining bag, and a J -tube feeding bag, oxygen, and the inability to walk, it is not possible for him to play. That is when it all hit me like a ton of bricks. My child is really disabled. He is unable to go play with his brothers ina public place. He cannot climb those stairs, he cannot play in the ball pit, he cannot slide down the rocket slide. IT is just NOT FAIR!!! Why can't he do those things? Why can't he be normal. And you know, at that very moment i felt like everyone around me was just staring at him like an alien in the space center. I found myself grabbing his chair and leaving the area. I knew it was just me, but it hurt me so much anyway.

I know i cannot do anything about it, but its still just stinks. I ache for Landon to be able to do normal things, thankfully though once we are at home he can do mostly normal things, and that really helps me put things into perspective. But when i hear people take the everyday things for granted it really makes me angry and i sure hate to be angry about things like that. I hope as he gets older i will find peace with all these things.

Home Sweet Home!

I never thought those words would seem so nice as they did yesterday. When the attending Dr. came in yesterday and said we were free to go home, i was so excited. (I won't tell you that i was already completely packed!) LOL!

For those of you that know me, you know i would NEVER push us out the door unless the dr. said they were comfortable with it... (HA) So, i made sure they all remembered that i knew the drill. Getting home, was great, but adjusting to home life again with 5 people in the house is such an adjustment. It's been a year since i have been home. The days before where i got to come home for days at a time, it was either to pack for vacation, or go to Disney world for our Make a Wish trip, so coming home and unpacking, and getting settles was quite the event.

But, never fear... i think i am getting back into the groove of things around here. I know my husband is glad for me to be home, for the last year he has been the mom and the dad, so he's taken on cooking, cleaning, signing school papers, getting kids to school, and the list goes on. Hopefully now, i can do some of that.

It's hard because i have missed out on all this for the last year, and i feel so lost in my own world. This new world that opened up for us includes giving all IV medications, writing out when /how much medicine i gave, keeping a log of how much he pees, and how often, and if i need to give IV fluids. I mean what happened to getting up, fixing breakfast, making lunch for the boys, and the simple things.

However, this is my new normal, so we will keep doing what needs to be done and not think about it.

Welcome to my world!

Welcome to my blog. This i created for you to all get a look into the world through my eyes. A place for me to show you as a mom what i go through in daily life. We are far from the normal family . We live a very different life from most other families. Some of you that read my blog will know what it's like in many ways to do what i do, others of you will ask me how i do it everyday, and others will completely disagree, but i think this will be good for me to have to let my frustrations out, and just get to be me for once. Though i am not the best writer by all means, i love to do blog, because it helps me get my frustrations out. My life resolves around my 3 boys, my husband, my family , Doctors, nurses, and lots of other medical people.