Mason, I called every person I can think of and argued with all parties involved, the insurance company has given me it's final no.
They are willing to let us go t0 Orange County but that still will not be all of us in the same house. I wish that I had more time to be here but we also need to keep paying our bills. We have to keep you in diapers, Pierce in juice, Mama in Diet Coke, and Bonnie needs dog food too.
You are doing better every day.
Your breathing is getting louder, last night you sounded like a grandpa snoring. You did have a rough night, the only thing I could do to comfort you was tap on your belly. After a while you had a bowel movement worthy of a six year old, what is in that formula?
Today you had a sleep study to see if you can be taken off the oxygen. We will get the results tomorrow. Hopefully you pass, taking the nasal cannula off so we can see your face without tape.
Time has flown by it is hard to believe that you are almost a month old.
Your Mom and I are tired and working out the plan for this month.
I am going back to an empty house on Monday night. No Mason, No Pierce, No Mama, not even Bonnie, six years ago that was the my norm.
Now I am just going to feel like part of me is missing, the best part.
So get bigger, stronger, better, lets all get home!!
-Dad
4 years ago
7 comments:
Beautiful words... (Catherine Mama to Reuben CHARGER 3 and Callum)
Things will get better. Mason has proved this to be true every day. Let us know if you need anything at all. Hugs to all.
oh thanks for writing back! I can't find my mobile charger (one of the only long term issues is Mama brain cell loss with CHARGE) so hopefully it'll turn up soon.. are you on Facebook.. I'm under Catherine Lacey Dodd.. and there are a tonne of other families there too. Unfortunately CHLA were hopeless at doing that part for us, Medical and it wasn't til we left and discovered the Regional Center that we met a guy called Bill Feeman and he made the magic happen. That was such a painful part.. the medical side and so unnecessary when you're fighting for your child's life. I'm from the UK so paying for medical is still alien to me.
I'm so proud of you G. You are such a strong and wonderful man and your fmaily is lucky to have you. you are so blessed to be the leader of 3 of the most amazing people ever. I know your strong shoulders are getting weak, your heart heavy but know you are loved and prayed for always. Ask for help, we are all here for you guys! All my love always!!!
introducing another new family in CHARGE land
http://ketcham22.blogspot.com/
some how i am not surprised and at catherine i bet ya theres a million bloggers otu there that we dotn know about that r in charge land so let us all keep searching i say
Chin up dad! You are fighting the good fight! Get that boy on medicaid. Google medicaid waiver programs for California. I know they are out there. Talk to other parents of kids with special needs, they will tell you more than most social workers. Often there are back door ways to get on medicaid that are not advertised and parents know about them. Medicaid waivers are based on your son's medical needs and his income not yours. If he is getting a g-tube that will often qualify him for many programs. Contact early intervention now, and they may be able to point you in the right direction as well. I know it is all overwhelming! Keep on fighting and remember to take a rest when you need it. I used to open my mail only once a week and deal with it then because it was too much to do on a daily basis. When you start getting bills you can't afford call and talk to people, they will often write stuff off when you explain the big picture. Find someone that is positive and walked the path before you. They can be a huge help. In a few years you will be able to walk someone else through what you are going through now. More prayers for you and yours!
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