My daily life

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

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!

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

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!

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!

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

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