My Life with Keian

Scary business!

2008-08-22T19:50:00.000-07:00

Today we had a bit of a scare! Lee had come home from work and picked Keian up out of his seat. Lee felt something wet drip on his hands and thought his feeding tube had come disconnect. We went to reconnect the thing and found Keian had pulled the entire thing out!

Now with a feeding tube if it gets pulled out of the stomach it can close up within a matter of minutes. I grabbed Keian's extra tube and layed Keian on the floor. It would not go in. We had to run Keian up to Memorial and have someone insert one. It was an hour before we actually got a tube inserted. Luckily it did not close! If it had Keian would have had to have another surgery to have it placed again.

The nurses measured Keian and we found out that Keian's tube was just too small. No one told me that once it gets too small it will fall out.

Urology Appointment

2008-08-05T01:36:00.000-07:00

Hi everyone!!!!!!!!

We had an awesome day today in Seattle! Today was our follow up with the Urologist! We started out the day by having an ultra sound and a renal scan done. Keian did not like either of them. The probe from the ultra sound scared the little guy, but by the end he was laughing because it tickled.

The renal scan was scary for poor Keian. First they put an IV in him. They poked him the first time only for his vein to collapse and they couldn't use that site. They poked him a second time got the darn thing all ready to tape down only to find it was an artery and not a vein.They pulled it out. The poor young nurse said to me I'm sorry I can't take doing this to your little guy I need to leave. She had to be only about 24 years old at the oldest. She left in tears. Poor nurse didn't have the heart to poke Keian any more. Luckily on of the veins in Keian's head was really good so they called in the IV team and in seconds they had the thing all done up and ready to go. Keian was screaming the entire time this was going on and when it was over he collapsed in my arms to sleep until we moved to the next room. Now if anyone of you hasn't yet heard Keian scream its kind of a pathetic little screech that sounds like a cross between a mouse and chicken. Not really loud but you can tell he's not taking things well.
We got into our little room and as soon as I put Keian down in the cradle he started freaking out. When he freaks out he pulls his limbs in and tightens everything up. Since we wanted his lower half fairly straight I had to hold his head in my arms and lay my head next to his talking to him gently. Poor guy just wanted to watch a movie so they put on Baby Einstein for him which he watched 3 times quietly until the scan was complete.

The results were:

His one normal Kidney is nice and strong!!! No problems.

The one on his left side is a nub. The entire left side of his renal system is underdeveloped. There should be sphincters in the tubes that prevent the urine in his bladder from going back up the tube to his kidneys. He does not have these. This puts Keian at risk for kidney infections. If the nub is functional we need to have it removed If it is not functional Keian can get off antibiotics and not have to have another surgery.

Keian will not have to have that surgery because ......IT'S NOT FUNCTIONAL!!!!!!!!!!!!!!!!!!!

Stressed

2008-08-02T02:50:00.000-07:00

I am stressed! EVERYTHING seems to be piling up. My house, homework, phone calls, laundry! I don't know how I am going to get through the next month.

First off Keian's surgery is still on for August 13th. Dr. White decided not to take any time off work for the time being. Second we have been trying to go throught the house to get rid of junk we just don't need. Third I have a quarter ending and a bunch of work to do. Fourth we need to start fundraising for a vehical. My van is starting to have problems and I'm afraid we may be putting a band aid on broken bone.

On top of everything my doctor has put me on a new medication for depression and anxiety. It works better for me however I need a higher dose and can't increase for another week. On the upside of things I seem to have way more energy to do what I need to.

I'm starting to feel overwelmed. I need an assistant! Anyone want a job that pays next to nothing? I didn't think so!

New medications

2008-08-01T04:30:00.000-07:00

I know there are some medications that my doctors want me to try out. I just am not sure what else I can do. I have been up ALL night. it is now 4:30 am and I am still awake. My body just can't get use to this stupid medication. I take it in the morning and I am asleep. I take it in the evening and I am awake. I can't win. I even tried to take a sleeping pill. I have incredibly too much energy with this new medication. I guess thats a good thing since I really am going to need it in the comming months. With Lee working all the time, I barely will have any time to my self.

Surgery

2008-07-24T20:27:00.000-07:00

We are now looking foward to Keian having surgery on his feet! Surgery day is August 13th. Keian will be in casts about 6 weeks following surgery.

Depending on others

2008-07-22T14:38:00.000-07:00

I have learned a lot over the past years about being humble and asking for help. With a special needs son you can't not help but depend on the kindness of strangers and friends. Over the past year or so I have felt like all I have done is take, take, take from people. I have wanted to be able to give to others as much as I have been given to. Yesterday I got the chance.
I got a call from some missionaries asking me if I knew of a shuttle that could get up to Seattle Children's Hospital. I immediately knew someone needed my help. Although I wasn't able to be there personally for this person, I was able to pull together the resources that I have learned about to lessen the burden of a family that was so critically in need of help. I am glad I have gotten the oportunity to share my knowledge with others and help lessen the burden on their family. I am glad I have gotten the opportunity to serve a family, no matter how small. I am thankful that our Lord listens to our prayers and gets people in touch with the right people. I am glad that we have such a loving Father in Heaven who allows us to show kindness and the love of the savior through serving.

Good News

2008-07-17T19:33:00.001-07:00

Today has been a good day! We took the long trip to Seattle again. This time I took Jessica and Kyle. We started our day at 4 am and got off on the road at 5:30. We only had one appointment today and that was just an upper GI.
Keian HATED it!
First they started off by taking and picture (x-ray) of his stomache. Oh boy did her scream! He hated how close the machine was getting to him. Then the technitian gave him a toy with spinning lights. Keian started to laugh and I thought he might actually be ok. The doctors came in and then they proceeded to strap Keian in to a contraption that kept him perfectly still other than his arms. This contraption held his head in place and tilted him side to side. Keian not only didn't like the fact that it moved but every time he heard any of of the velcro being undone he'd scream louder. By the time the doctors and the technitians were ready to go, Keian was at a full out screaming in crying. Poor guy was so scared it took him a full half our to calm him down and he passed out from exahstion.
Well Keian passed with flying colors! His nissen is fine. He is not refluxing and getting anything up. He can get stuff up however if he coughs hard enough. We now need to keep Keian's airway clean which means no food when he gets a runny nose. Sunctioning out his nose on a daily basis if sick and giving him polmacort on a daily basis.
Well after the doctor the family went to the Children's museum in Seattle. Boy did Kyle and Jessica have fun. It was so much fun that neither of them wanted to leave and we had to promise to come back another time.

My daily life

2008-07-05T19:30:00.000-07:00

Ok many of you have wondered what my life is really like having a child with special needs. Well its a bit busy. Here is a run down of what my day is usually like.

7am Roll out of bed and get Jessica some breakfast.
7;30 Check on Keian to make sure he is breathing, change a diaper and sometimes change his bedding, Refill Keian's feeding bag for breakfast, give keian his morning meds
8:00 Check my email, list of calls to make and get a little bit of homework done if there is time.
9 am start my phone calls
My list of calls
1. Call and schedual appointments at children's hospital for orthopedics, pulminology, urology, cardiologist, hearing and speach, and xrays.
2. call doctor in gentetics to get referals done for those that are not updated.
3. call back and schedual appointmsents that needed referals
4. call people for people and arrange gas vouchers for the days I need to travel to Seattle.
5. Call 3 to 4 people to arrange a babysitter for Jessica.
6. Call to refill Keian's, Lee's and my medications.
7. call to schedual a WIC appointment
8. Call DR in town to get a check up for Keian to get shots or imunizations
9. call dietician to order tube supplies and feeding supplies and schedual appointment for the month
10. call to check on what needs to be done to get keian's wheel chair approved
(note: most of these calls are made on a weekly basis. Usually I can not get through all of them by 11 am because I end up playing phone tag and Jessica starts acting up)
11am Make lunch and eat
12 feed Keian lunch
12:30 play with Jessica
1;30 Do Keian's physical therapy
2:30 Keian is down for a nap. Time to get some homework done while Jessica plays on the computer
3:30 Time to start dinner if Lee is comming home or take a nap if he is working overtime

Ok no wonder I never get anything done!!!! I need a secretary!

Runny nose

2008-06-28T14:47:00.001-07:00

Ok I never thought I'd see the day that a runny nose worries me. For most kids, runny noses are a common thing. Runny noses are just a part of childhood. What worries me is that of Keian gets a runny nose he starts to choke and then throws up. Then he aspirates on the puke. Not fun and not nice. Is it a sinus infection? No its just the common runny nose. Keian is just having problems with swallowing increased secretions. He may grow out of it and he may not. I just have to keep the suction machine handy.
On another note we have applied for respite care. It may be a while to get it but eventually we will. That would give us some needed breaks and get us some rest every once in a while.

Its been a while!

2008-06-26T10:37:00.000-07:00

It's been a while. Ok ok I know. I need to keep this thing updated especially since I am trying hard to spread the word about Keian's condition. Keian currently has been suffering from pnemonia off and on. We need to be careful about feeding him anything by mouth when he is sick. The good news is that his g-tube is beg enough to handle baby food when mixed with water. The bad news is that the little booger LOVES food. He dances when ever he gets food in his mouth. Poor guy can only have a taste or two of food.

Keain and his blood sugars

2008-01-10T13:31:00.000-08:00

So we are in the hospital again. We finally found the cause of Keian's sezuires and blood sugar problems. We got admitted yesterday to Children's Hospital in Seattle. They wanted to force Keian's blood sugar to go down and then take a bunch of blood to do tests. The poor kid was a pin coushion last night, getting poked every half hour for 17 hours.
The doctors have determined that Keian makes too much insulin. What does this mean for him? The short story is that Keian will have to take medicine the rest of his life or possibly a surgery to remove part of his pancrease. We need one last test before they decide on this but they are starting him on the oral medication first.

It's been a while!

2008-01-07T18:18:00.000-08:00

Ok it's been a couple months. Mainly because I haven't felt much like doing anything I enjoy for a few months. I asked my doctor to change my medication because I was getting so down. I'm feeling better and the family is doing well! Here is a little video of Keian I thought you all might like! He LOVES football!

2007-10-30T00:36:00.000-07:00

Night time comes with a vengance for me. It is a lonely time. It is full of thoughts of what didn't get done today and what needs to be done tomorrow. What can wait until later, what should be done next. I feel like I am trying to keep my head above water to get pushed back down from the reality that I am only one person trying to do the job of three people. I know I have only made it this far with the Lord's help. I have only made it this far because I have asked for help. I am tired and I am weary. I am anxious and I am lonely. I am trying so hard and failing. I need more hands, I need more brains, I need more, I need. I don't even know what to ask for in help because nothing seems to be helpful. I am grateful that everyone wants to help. I am tired of being strong and I am tired of holding it together. I want to hide. I want to run.
My husband asked me tonight if I had one day alone, no kids, no reponsibility what would I do? I just don't know. I just don't know what to enjoy, I don't know where to go. I have no good friends any more to spend time with, I have no hobbies, I slowly am loosing myself in a world of uncertainties.

A seat for Keian

2007-10-18T16:30:00.000-07:00

Thanks to Grandpa we have gotten a chair of our own. This chair came with a wonderful toy that Keian really loves. Thanks Grandpa!

10 things you may not know about me

2007-10-18T11:33:00.000-07:00

1. I have this thing about people reading over my shoulder. I hate it! You can read what I wrote, I don't care just don't do it over my shoulder.

2. I hate sharing drinks even with my husband. Yeah I know I kiss the guy full on the mouth but it just grosses me out to share a glass or a bottle of something.

3. I have this fear of vampires in my closet. I have ever since I was a child. As an adult I know they are not real but every once in a while I have a dream about one in my closet and wake up all scared.

4. I have no feeling in my middle toe on my right foot. I also do not have the reflex of when you hit the nerve in your ankle and it is supposed to jump. Ever since I herniated a disc in my back I have had these things wrong.

5. Sometimes I dream of going to India to study yoga and meditation for a month. I know this will not happen until my children are grown and may not happen at all but it is still a dream of mine.

6. It would not bother me to give up watching TV but it would bother me not to have the internet. I feel connected to the world through the internet.

7. I do not believe in global warming. I think the earth goes through phases. It went through and Ice Age and it warmed up. It rained for 40 days and it dried up. I think the world is going to warm up and the earth will catch on fire all over the world.

8. I tend to think that most people are stupid. They get all upset over nothing and bent out of shape over nothing. In the big scheme of things holding grudges and being mean to people only comes back to bite you in the ass. Forgive and forget...It may not be easy but doing it makes your life easier.

9. If I could change my life and do things over again the only thing I would change would be to finish school early.

10. I have a thing for Sylvester Stalone. He was hot in the Rocky movies!

Who will be right?

2007-10-18T11:13:00.000-07:00

I can't help but feel excited today. Excited for both of my sisters who are going to have babies. Laura is going to go any time. My bet is on the 26th. She thinks she will on 22nd or 23rd. We will see!

Laughing baby

2007-10-16T19:32:00.000-07:00

Isn't this the cutest thing??Laughing baby!

A backwards life

2007-10-16T08:54:00.000-07:00

Last night I read something very interesting that made me think. The problem with most people is that they go about life backwards. They should be living and being who they are, doing what they need to do and then the treasures of the world will come to them.
So true! Many people go looking for treasure and seek out the wrong things in life. If we continue on a path to only seek out money then we will be miserable. We get lost in who we are and forget to be that person.

Jessica...not that innocent!

2007-10-15T20:01:00.000-07:00

A new style for Jessica

2007-10-15T12:27:00.000-07:00

As many of you do not know, Jessica got gum in her hair this weekend and we had to get it cut off. She loved going to get her hair cut and said thank you for my new hair. I have to admit she looks cute! Here she is showing off her new do.

More news

2007-10-15T10:09:00.000-07:00

The other shoe dropped! Not about Keian but about me. I got a call from my rhumatologist this morning. She has been researching the last 3 days. Something to her seemed familar when I was talking about my dad's symptoms and my own. She has been searching for some notes she took a long long time ago. I am going to see a neurologist. I don't know if I should be excited that it is not Lupus or sad that the aches and pains will get worse.

I have been to the extreme already. Not being able to use my hands or walk. That was a couple years ago. It got better. I refuse to let this beat my spirit! I am strong and I can get a long just fine. I have already found ways to cope. It is just a matter of finding more ways to cope. I am not any worse off than I was a few days ago. No matter what the doctors tell me this has always been there.

Keian had an evaluation this morning. We had a sight teacher come to visit. He is doing well for his "age." (If you adjust him to his developmental age which is about 3 months) We will be having another person come to visit us reguarly by the end of the month. This is for feedings. We are going to start working on eating by mouth. He is not nearly coordinated I think to eat solids but they say he is and that the calories will do him some good.

Awake in the night

2007-10-15T00:52:00.000-07:00

I am up. 1 am and I am up again. I think it is the worried me setting in. Things are going great and I am worried. About what? I don't know but I am anxious and I am worried. I think I thrive on drama and things going bad these days. Something to do other than the daily nothingness of everyday life. As things settle down in life I feel an uneasiness. It could be that I am not use to having no one to really talk ot. It could be that I am so use to being out there in the world working on something. It could just be my nerves at one in the morning shouting at me to get off the computer and go to bed.
I realize that I have not had a best friend in a long long time. Someone that gets me and someone that no matter what crazy things I do they will always love me and they will always call me their best friend. I think I am too high maitenance for most people and I tend to choose people that are too high matienance for me. I look back at the last time I had a real best friend and it was when I was something like 10. Beth. I still call Beth at times. She has turned into the person I never want to be. Single, smoker, drinker. Divorced two times. She married loosers she met in a bar. The same bar! Go figure things didn't work out. She is strong though. She knew she didn't want to be a mother and never had kids. She is understanding and never judges me still to this day, but we come from such different lives now and she does not get me anymore.
Some say I should turn to my husband in this. He has his own problems that dealing with my darkness at times is too much for him and he turns and runs. I don't blame him. I run from his. We don't get eachother and I don't think we ever will but that is what makes us work. We love eachother in the good and bad times but we don't get eachother. For example I don't get why he can't take pills to get over the physical pain and he doesn't get why I do. I guess neither way is bad but neither of us gets why.
I am reading the best book these day.Eat, Pray, Love by Elizabeth Gilbert. Many people could be offended by her interpretation of God and religious things. Be open I say and read it. It is a really good book about her journey through life.

thoughts

2007-10-14T18:42:00.000-07:00

I cannot write. I have sat here with my journal for the past 30 minutes thinking that I need to update things. I am dead. Not literally but my mind has fogged over so badly I feel like there is nothing in there. Is it the headache or is it the lack of energy I feel? I don't know and it hurts to think about it. I am tired. Very tired. My hands hurt but I refuse to let my aches and pains get to me and take over my life and rob me of the pure enjoyment I get from writing.

A good friend of mine tells me I should write a book. I agree but I am as unfocused as a 3 year old on a caffeine. I know I am destined to write something other than journals and this blog. I know that one day I will definitely be looking down at a book I have written, but about what?

Keian is doing well. I have some fears that he will not get better when it comes to his muscles. Some days I think wow he is getting so much bigger and he is trying so hard to do things but he is not getting better when it comes to his neck. Day after day we work on his neck and day after day I think are we doing this in vain?

Kyle is getting bigger and bigger. I can tell he is resentful of the fact that his sister and brother get so much attention. I think he is diluted in thinking that his mother will come back to his father. He asked me today why I left his dad. He told me his dad said it was because I wanted to be with someone else. Poor kid. It wasn't that I wanted someone else, it was that the way both of us dealt with each other had become so toxic that there was no point in me staying. I had changed EVERYTHING about me for him. I changed my belief system and everything to please his father and to make him "love" me the way I wanted him to. He never knew what love was until Kyle came along. He never knew how to accept someone that was different from him and still love all the differences as much as the similarities. He wanted a clone. He wanted what his parents wanted for him and not what was really in his heart.

Don't get me wrong, Kyle's father was not a bad guy. He was never evil and he was never abusive. He loved his child as much as any good parent does. He just didn't know how to love a partner. I feel sorry for him in that he will ALWAYS be under his mother's thumb. Her opinion will matter way too much to him. He will always choose her over his partner. He will never know what it is like to truly have someone on his side that is his equal.

Jessica is suffering. She too is feeling the loss of a parent. Lee is gone so much working these days she is having such a hard time with it. I see the difference in her when he is around. So much less wound up and able to just relax. I can not wait until hop season is over. I will be glad to have my husband back.

We all need to be free to live!

2007-10-10T23:06:00.000-07:00

We all need to be free to live!

The need to keep going

2007-10-10T22:37:00.000-07:00

I sit here in the dark thinking and wishing I had more of a purpose. I wish I was more than just a mother. Why is there always the endless loads of laundry and why is there always messes to pick up? I want to scream out and take life by the hand again instead of it taking me kicking and screaming down a side street to rob me of my youth. The price we pay to be a mother! I think my youngest says it best in this picture! To look at his perfect little face you would think there is nothing wrong with him. He is a sweet little 3 month old. I can't believe he is almost 9 months now. He should be crawling! He should be sitting! Poor baby can't even roll over and eats from a tube in his stomach. I sometimes wish I could take it all away. I wish he was normal so he could run and jump and play and bug his brother and sister. I wish he could steal their toys and bang on pots and pans in the cupboard by the stove. I pray he can eat cake on his first birthday and will be able to sit up while we sing happy birthday. I hope one day he will grow! I keep going for him. I keep praying for him. I keep loving for him. I keep hoping for him. I keep living for him.