So I know all of you have been waiting so patiently for a picture of Sydney's car. Colton had an appointment in Seattle on Friday, so I ran out of time. Sydney also went to her friend's house for the weekend and I can't find her stinkin car. I have to wait until she gets home to get a picture of it. I promise I will, it rocks!!
Back to Colton's appointment....We have been praying for quite some time now about our little guy. Praying for wisdom to find a way to manage/treat his skin condition and for a peace to know what the right thing to do is. Dusty and I both really feel we got the right answer on Friday when we went to see his dermatologist. She saw Colton and was pretty surprised to see there was no progress and in fact that he had gotten worse. We were in there no longer than a few minutes before she told us he needed to be admitted to National Jewish Hospital in Denver, CO. He has a severe case and they are worried about his deterioration. So many things have been affected through this that we probably don't even know. He is still completely off of all food, has stooling issues and sleeplessness among many other things. He has always been a small little guy but he is behind in a few areas such as walking, developmental milestones, etc. They believe it is because he is technically "not thriving". He is not getting what he needs for his body to perform as it should. Basically, she gave me the number to the hospital and I coordinate directly with an intake nurse there. I will be calling first thing Monday morning to find out when they can admit him. I am nervous and excited. I feel an amazing sense of peace that he is going to be taken care of and he will finally get the relief he deserves. He has been so miserable for so long!
So here is a breakdown of what I know about it right now. I will know a lot more tomorrow after talking with them and will share as I get updates...
The area he will be admitted to is compared to a burn center. They come in every couple of hours and do treatments, wet wraps, and get him to a place where his skin will start to recover. Right now we are just barely managing his itching basically. His skin is so bad that we are not even treating it because the layer of skin on top is blocking the treatment from going to his lower layers of skin. Once he starts to respond to the treatment, they will be teaching me how to manage and care for him at home. I know we will be there at least a week but can be much longer depending on his reaction to the treatment. I don't know why but in my mind I can imagine being there two to three weeks total (maybe God is trying to prepare me :)
Like I said earlier, we feel completely blessed to have this opportunity to help our son. The great thing about it is that once I learn this treatment, I will be able to come home and help my girls as well. They have been pretty miserable lately too. All my kids, with the exception of Sydney, have this condition and wake up several times a night from it. The difference between the girls and Colton is that he has basically had staph infection off and on for as long as I can remember. Every time he gets it, it appears to be worse and spread quicker each time. They have warned me that there are dangers involved with children like this because of MRSA and herpetic type viruses that are so common now. They can be fatal in children like this. So with all that and the amounts of steroids and antibiotics he has been on, I definitely take it very seriously. He has basically become immune to the medicines they have been giving him (which are about seven per day). So I know it may sound odd to some or that I am overreacting but for the most part, I think everyone knows how much this has affected Colton, Dusty and I and our entire family. This will be life changing.
So I am praying for these things...
My family while I am gone. I would love for Dusty to come with me but with three kids, he really needs to be with them. He also has to work. We are hoping he can fly with me to Denver, get us settled for a day or two and then fly home. This would be HUGE for me as I am very nervous about how this is all going to work out.
I am looking for a laptop. I am thinking it is going to be pretty lonely and I am going to miss my family dearly. I have never been away from the kids this long (i think the longest is two nights) and I don't know who it is going to be harder on, them or me :) It would give me something to do and a way to keep in "contact". I would love to be able to document my experience and keep in touch with my family. My sister suggested I get a webcam so I can see my kiddos. I would love that. I talked to Chrisanna and she has one. She says they work great and don't actually cost a ton. I guess I would have to buy two since we would both need one?! So if anyone has any suggestions/ideas I would love to hear about it!!
Me. I am nervous, excited, anxious and scared. I am thinking about how in the world I am going to get my meals, shower, do laundry, etc. I will have to do all of the above and I know God is going to take care of it. I will have to take off of work while I am gone and have the extra expenses of eating at the hospital.
Dusty. I know he feels torn, he wants to be there with us but the best thing is for him to be at home. He is such a huge support to me and a great father. Colton and I will miss him!! I am praying he can come for a few days at least. Also, that if needs something, he can be open about it. Dusty has a tendency to carry a lot by himself. Dust, I know you would be there with us if you could. I love you.
Colton. He is not the easiest little guy sometimes and it is going to be a whole new, hard experience for him. Just pray that he will cooperate, get relief and respond quickly to the treatment.
I appreciate all the support, love and prayer we get from everyone who knows us. We already had someone at church approach us about getting us plane tickets to Denver. They have frequent flier miles they want to give us. It is such a huge blessing. Several other people offered to help with meals for my family while I am gone and to help with the kids. My parents and sisters will do everything and anything they can to help. Dusty's parents have offered to help with anything too. God is SO good. He has already shown himself to me that I will not be alone at the hospital, He will be there. I couldn't ask for better company.
So thank you for reading and listening to me be so open about something so private. Through everything we have gone through in the past couple of years, I have learned to lean on people more, they want to be there for you. So thank you.
