My Sweet Boy

My sweet boy went to heaven on July 27th, Sunday morning at 815A, He struggled through the night for breaths, it was soo very diffult to watch. He was not in pain.
His last few breaths were very peaceful, he waited till his big sis and his cousins said goodbye to him and within minutes he had passed. My heart tells me that is what he was waiting for, just one last goodbye to them. I told Paige he was going to heaven and that this was the day I had told her about. She gave me the tightest squeeze she has ever given me and walked out of the room and told her cousins that Landon was going to heaven today.
This has been the most horrible week of my life. I imagined it to be painful and horrible, but it is worse than I could have ever imagined.
The service was more than I could have ever wanted for my sweet boy. I found so much peace in the church, I could feel him there and I was sooo comforted by that. The burial was difficult, but I knew that my baby boy was in heaven and that this was just the physical aspect of him.
I can feel in my soul his freedom and his love for us, and that is what will carry me from this day on.
My sisters, I don't know that I could have done this without them. They keep me laughing. My mom, I would not be here with out her. My dad, comforts me with his eyes.
Laurie, I have never had a friend like you before and I could not imagine my life without you!!
Haley, Katie and Kelsie, you are simply amazing! God gave you to us as a special gift.
Shan, I felt a great comfort in your presence, thank you soo much for being there!
Holly and Michaelene, you guys are soo special to me and I know we will forever be friends and I take joy in the fact that you grew to love my Landon and Paige.
To all our friends and family you mean the world to us, you make our hearts whole!!

Here is a link to the montage that was played at his service.
http://www.onetruemedia.com/shared?p=5d3b601f49b78121c58e96&skin_id=601&utm_source=otm&utm_medium=text_url

Update

Landon continues to worsen. His body is swelling and his breathing is not well. Please, please pray for us. My family is here, Mike is hear and my sister is flying in from KC.
I will update and Shan when something happens I will call you before I post anywhere.

Tami

Emotions

I don't really know how I feel, I feel so many different emotions and then when I think of it I feel almost numb.
The last few days have been a whirlwind. Nothing can prepare yourself for watching your child suffer. No matter how much you have seen or watched it is worse the next time around. This time I know that Landon is comfortable and I find peace in that.
A few nights ago Landon had a 103 fever and struggled alot! He turned blue at one point. Yesterday and last night he was breathing easier and fever went down. Today he is struggling quite a bit again.
He had his massage, he loved it. He has not been awake for days, but you can just tell he loves it! She will be coming out 2 times a week now. I feel so much peace watching him get a massage. I cannot exlain the feeling but it is very peacful.
After the massage the pastor from our church came and did the noining of the sick on Landon. Again very peacful and good to be reminded God is carrying us right now!
I cannot put into words what your support means. Phone calls, emails, I never would have imagined friends like you guys. Some of you I have not met, some I have and I feel like we have been best friends for life. Thank you for that. I am not on the computer much at all. I come down to update is CB and do some work from home and that is it. I have read the emails and hope to respond soon. I knew this would get to everyone. I will update again soon.
Tami

Bath Time!!!!

It has been soo long since I have been able to give Landon a bath. He just has not tolerated it. Everyone has told me how well a warm bath has help there child. I have not tried to give him one for a while so I thought I would try and he actually tolerated it!! Now he is fast asleep. I bought a CD with relaxing music and ocean waves in the background. I figured if it didn't work for him, it would for me!! Such a stress reliever!! He has been pretty calm today, still week and tight breathing at times but the muscles are more relaxed. The tightening periods have decreased!! That in itself is a relief. I know he is much more comfortable today than he has been. I took pics and here they are. Thank you all so so much for the prayers!!

During Bath

After Bath

Pictures of the last few weeks

Paige getting a pedicure

Paige's new fave thing to do... Water Balloons!


Landon after his massage

This Morning..............

Massage

Landon's massage today went awesome. I could not beleive he could be soo relaxed. It brought me to tears watching him lay on the floor with such peaceful music and to see him soo comfortable. He really is an angel!!

3 hours after the massage he had a bowel movement. If anyone is ever having problems in the BM department, seriously!! It is just a small little massage around the belly button area and it works wonders!!

I cut back on his phoenebarb. Normal range is 14-40, I know what a huge range. His level was 49 a month or so ago and this was after we brought him home from the hospice care center, so we decreased it and he was so much more alert and content. Well this week they rechecked it and it is 43, they wanted to keep it since he was content, but I decreased it to see if that will make any difference whatso ever. He just seems to not be handling his last 4-5 days or so. He has been completely out if and vomiting after he gets it. So I don't know if your body starts to shut down if the meds just don't absorb right. He was starting to get really tight and tense while I was giving them and then all of a sudden he stopped and looked up over the ceiling. He cannot see. His eyes were the widest I have seen in a long time, I don't think it was a seizure just because he was grasping and moving his fingures. It was as if he was wathing something. He did grasp my fingure with the right hand. He has a weird muscle twitch in that arm and sometimes he just cannot use it at all. His breathing is very tight and has to be positioned just right to make it easier for him.

I want to thank you all, I could not ask for a better support team!! It means the world!! I will keep posting to let you know what is going on. I want to post a wonderful poem emailed to me, I love this poem. And the picture I just took outside from the driveway.

Footprints in the Sand
One night I had a dream -- I dreamed I was walking along the beach with the Lord, andAcross the sky flashed scenes from my life.For each scene I noticed two sets of footprints in the sand;One belonged to me, and the other to the Lord.When the last scene of my life flashed before us,I looked back at the footprints in the sand.I noticed that many times along the path of my life,There was only one set of footprints.I also noticed that it happened at the very lowest and saddest times in my lifeThis really bothered me, and I questioned the Lord about it."Lord, you said that once I decided to follow you,You would walk with me all the way;But I have noticed that during the most troublesome times in my life,There is only one set of footprints.I don't understand why in times when Ineeded you the most, you should leave me.The Lord replied, "My precious, preciouschild. I love you, and I would never,never leave you during your times oftrial and suffering.When you saw only one set of footprints,It was then that I carried you."

Heavy heart

My heart hurts, it hurts for my son. He is so very week, I am scared. I have not seen him this week since December when we almost lost him. I have seen him in soo many different state and I have to say this may bet the worst. Maybe becasue it is happening right now and I cannot remember the exact state before. Things seem to happen soo quickly all the time. One day he has 5 BM's and is content and alert and the next he is vomiting and so week. He can barely move his arm, he cannot wrap his fingures around mine with his right hand. He does not move except for to squirm in this most uncomfortable way. I have no other choice but to watch this happen to him. I asked my mom (nurse) how his labs could possibly be soo good and him be soo horrible. Her reply was, it is not in his blood this time........ meaning it is his brain not knowing how to function correctly to even have his body work. I am soo glad I am home with him for the next 4 days. This has been coming now for a while but seems like I just found it. I don't know if this is the end of it for him or if he will possibly pop back again like he has in the past. But in the past there has always been something to treat. Now there is nothing. He is on seizure meds, his blood levels are good, he is not dehydrated or acidotic. Please, please pray for him. Pray that if this is his time to go that it is peaceful for him and us. We are having a massage therapist come out and I pray that this will be his "treatment" this time to keep him comfortable without doubling up on ativan and morphine.
You guys are great support and I cannot tell you how much you mean to me. Shan I will call you this weekend.
Tami

Conversation with sweet Paige

I had to jot this down, before I forget her exact words. Her fever cam back last night and she wanted me to lay with her while she tried to sleep. My first words were, "Ok, I will lay with you but, we have to be quiet and try to sleep."

5 seconds after my words***************
(P is Paige talking---M is me)

P-Mommy
M-Yes Paige
P-My panties go up my bum
M-Oh really
P-Yeah do yours do that too?
M-Yes sweetie, they do
P-I just do this and pull them out (demonstrates)
M-Good I 'm glad that you can make yourself more comfortable

Is that hilarious or what!!! She is too funny. I tried not to laugh because I really wanted her to sleep but really I could not resist!!
Also she has been asking about Landon's boy parts when I change him. I just told her that is his bottom. So she thinks girls have bums and boys have bottoms.

Lazzzzzy Day

Today is an inside lazy day. Pagie has a fever and Landon was having a rough time so I gave him ativan an he has been sleeping the last few hours. Paige woke in the middle of the night with a fever and still had it this morning. With IB and Tylenol it has finally subsided. She has not wanted to go outside, even to play tag. So we have been inside coloring and cutting with scissors.

I am tired, I need some uninterrupted sleep. I know once I get it though I will have gotten too much sleep and feel horrible. Paige was supposed to go to the Eaton days parade and then the fireworks tonight. She was bummed but not too bad. We will do something special when she is feeling better!!

It feels strange to sit inside. I feel as if I should be doing something. The house is mostly clean, Paige is watching Little Bill and Landon is still asleep. I feel lost without anything to do! I am starting to get used to the single parent thing. It keeps me busy. Mike has come and gone this week very little. He was coming every night or every other night but this week it was 2 times. So I guess we are both getting settled being split. I have less to worry about these days!

Here is to a good weekend. As of Friday I was down about 11 pounds. Not as much as I would have liked but not too bad!! I need to stop cheating on the weekends. After being at children's yesterday, we went through A&W and got some icecream. Last time I ordered a small chocolate chip cookie dough polar swirl and they only put the cookie dough on the very top, did not even mix it up....So this time I ordered another but asked for extra chocolate chip cookie dough. i am not kidding you, 3/4 of the cup was filled with it. I barely had any icecream at all. It was too funny.

Enjoy some pics.....

BTW--Paige is no longer eating fruit chews, she is now into popsicles. She only gets 1 a day and no other sweets! This is why in the this picture her lips are sooo red!

Walks and Rocks

Paige and I went for a nice little walk last night. We went over to the park and played for a bit and took the long way home. We live out on the dirt roads. She loves to pick up the rocks and if she drops one she will not move on until she finds that very same rock that she dropped. She even picked up some big rocks for her brother. She is soo thoughtful!! So we walk down he road and there is a guy watering his lawn. We are still about 3 houses down from him and she wales............HI!!!!! So of course he comes over to say Hi to her and she asks him questions, like how old are you.... Not really a questios someone that old wants to answer, but he did answer and he said 57 and her eyes got really big like, wow you are that many.... Was very funny, she we venture back of down the road as she skips and picks up rocks. I love to watch her every move she is soo fascinated and soo attentive to everything. I love spending time with just the 2 of us. She loves to pick the roses and put them in her room. So her table is covered in rocks and roses!!
Landon is hanging in, he seemed a bit more comfortable yesterday. He just keeps kicking his legs and I have to make sure his diaper does not rub them. He is kicking alot, it is a uncomfortable kick, he just cannot sit still. He has such an amazing spirit. You can tell when he gets excited His body moves in every direction, mainly because his brain cannot tell his body what to do. He knows when I get home from work, he hears Paige and I's voice and his little body moves around. I love to hold his hand and he is getting soo much hair. Paige's hair is really thin. I have very thick hair. Landon, that boy has thick hair. It is just now getting to a length were you can comb it a bit. I love it!!! He is just the sweetest little boy!!
After 2 days of getting passed aound on the phone, we have finally made an appt for his broviac to get repaired. We have to go to Children's to get it done...............:(
Another hour and half drive just to hope that things get done when we get there and have no run arounds. The good thing is that the lady who will be doing the repairs is the same lady who took care of his picc line when we were in the hospital for the month. She is sooo clean! So I am sooo hoping for a germ free visit.
Tami

Thank you

Thanks for your prayers, Landon was ok through the night and woke up pretty wet. So far today his dipaers are wet. Very good news! He is very squirmy still though and not sure if he is having seizures or if he is having stiff/pain in his muscles. I soo appreciate your thoughts and prayers!! This disease is horrible!! I hate it and everything about it. Is is down right scary!

Paige is doing well. She is getting soo big!! I look at her and her beauty is amazing. She had a dentist appt yesteday and she has 2 cavities, WHAT! I was a little suprised but we have been sclakin in that department. Since Landon was born we have tried to keep a routine, but really is not feezable all the time. Also she loves fruit chews, so we are backing down on the fruit chews. They will be a very special treat now. I am going to make it a point to make sure she brushes in the morning and at night and stick to it regardless. She will not have to have a shot for the fillings just some laughing gas. Thought should be hilarious!! This girl with laughing gas, yeah right!! Should be very interesting to say the least.

Thanks again for the prayers!!
Tami

Need prayers

Landon has had a very rough few days. Breathing issues, temp regulation issues and very very agitaded and squirmy. Today I noticed he has not had much for wet diapers and normally they are completely filled to the max due to the TPN fluids. Please pray that this is not his kidneys shutting down. Please pray that the bad days will end soon.
Thank you!!!
Tami

Movie with lots of popcorn

Me and Paige went to see Kit Kittredge, It was very cute! about a little girl wants to be journalist. Paige did good, she did get a bit bored but she sat through it! we did not even get up to go potty. She told me she had to go but I knew better, so I made her wait. It was fun and we actually between the 2 of us went through a small popcorn. Not good for the ole diet. But neither was the Frap I got on the way home!! It was fun!
We did not go to the fireworks last night, but did get to enjoy watching some from the porch. The kids a few houses down shot some off in the street. So that was a nice treat. Needless to say we were up till about 1030p and up this morning by 630A, of course Landon was up way before that. He like getting up at 5A. But I'll take it!! He is soo sweet in the morning!
I got a call from one of my mom's life long friends last night about 9p. One of her good friends daughter was murdered this week in Lawrence KS. She was only 25 going to college with a major in law. She unfortunately met the wrong man and he killed her. Please pay for her family!!
On a lighter note. Thanks Holly for the link!! I am seriously thinking about getting one. It would be perfect for Landon!! And I am a NASCAR fan, so headed up to watch some of the race!! That is if Paige does not make me turn the channel!!
Have a good rest of the weekend!!
Tami

Does this thing have a weight limit???

Ok Shan, I saw your picture of Marie in her bouncy. I thought, hmmm maybe I should get Landon's back out and see if he will sit in it. I am thinking it will be alot cooler than sittin in the bean bag........ Well, I guess the 8lbs he has up on Marie is enough to sit him to the ground!!

Check him out!

Happy 4th!!

Wow time has gone by soo fast. Not sure what the plans for tonight are. I really want Paige to see the fireworks, we will have to battle the crowds! I am sure she will love it! Last year were in Kansas and were able to our own fireworks show. So this will be new for her! We have a hospsice volunteer coming out this morning to spend some special time with Paige. They will color and do pretty much whatever she wants and try to talk about her feelings. She loves that they come to see her for a change!! We have never met this lady before, but she sounds very nice and she is very excited to come spend some time!! I think tomorow I will try to take her to see Wall-E. And swim in the pool and get some sun! Landon is still doing wonderful! I love these days and hope they last for a while!
Thanks to the troops that serve our country to keep us safe and free!!!!!
Have a safe and Happy weekend!!!!!!!!

Yummy Sangria's

Sangria’s

1 Lemon, 1 Lime, 1 Orange-----Cut into slices—put into jar
Make Simple Syrup-------1/2 cup water and ½ cup sugar and boil until it is syrup
Poor 3 tablespoons of the syrup into the jar of fruit
Add 1 bottle of Red Wine
Add 3 shots of Brandy
Add 6 oz of Orange Juice
Add Strawberries and blueberrys
Let chill over night

Serve in glass—Mix ½ glass of Sangria mix with the other ½ sprite

Fishies aren't supposed to float............

Ok, well we lost a fish. Poor thing. It was the old fish too, not even one of the new fish. We have had this fish for a year now. I added the other goldfish in the same bowl yesterday and sure enough I walked in this morning to wake Paige and it was belly flopped at the top of the water. Last night I was on the phone with a friend, I get a phone call 1 time a week (that is other than docs and stuff) and of course as soon as I get in mid conversation Paige comes up and starts saying I want this, I want to do this........So I just said ok, go do it. Well I guess she fed the fish....... Then she came back over and I think I remember her saying she fed them alot.......My mom went in and dug some of it out. But this fish eats like no tomorrow and may have already eaten a ton..... so that is the only thing I can think of that could have happened......
Paige she could have cared less. We took him in I made a comment on him looking bloated and flushed him. So of course all I heard all morning was "wow he was really bloated, that is crazy" I can only imagine what she told all the kids and teachers at preschool!! So hopefully the other 2 will survive!!