
Not really but I have felt very busy all of a sudden... Seattle weekly still. Some trips are better then others. Been going by train lately just easier then nina being mean/rude to my friend. My friendship with her is important and she should not have to deal with it. Not when she was driving us out of the kindness of her heart.
So the appointments have been going well. We only see the doctor for about 20 minutes and spend the other 13 hours of our day traveling but only about 6 hrs actually going to or from our destinations. I joke often about writing a book regarding the waiting process but one day I might get closer and write a poem lol..
So Nina gets the halo off in 18 days!!!! July 22nd to be exact. I have mixed feelings regarding this. Dr E is saying he thinks she is ready but hubby and i are not so sure she is doing the work well enough to be able to still do it when the device is off. She quite frankly is lazy. I worry constantly that they will remove it and she just won't do it and I won't have a way to do it for her. The device now is on insuch a way that if she refuses to do her jaw exercises then dad or I can do them anyway. When she wants to do them she is all smiles and says it doesn't hurt anymore. She just won't do them because she is lazy and its one of the few things she can rebel against. It is the same thing with doing her feedings AND having her water flushes after them. I feel like a broken record lately from telling her OVER and OVER that she controls the choices she makes and she KNOWS that she must have her full feedings and especially the water more so then normal since its been so hot. I am lucky to get more then 2 cups of water in her a day and its not like she has to taste it she can put it in the g-tube. So every time she refuses to do it we ground her from something. Her feedings are usually the biggest reason she gets grounded lately. Her feedings are not an option. They MUST be done. She usually gets up much earlier then we do then goes back to bed. She has learned over the years that I'm as good as deaf when I am asleep unless she is crying/hurt/sick. So she will sneak up eat everything she isn't supposed to in the fridge/cupboard and then go back to bed. Then when she does get up at 10am or so she will refuse to do her feeding which truly involves popping open two ensure type drinks (only kids version) pouring them into the feeding bag then hanging it on the pole or hooks we have around the house. it then takes about 45 seconds to prime the tubing and plug it in before she can basically do the exact same thing she was. It doesn't tie her down as that was the first excuse she gave. She kept saying she didn't always wanna sit in her room which we understood, so we have a hook next to the dinning table, it can hook under one of our standing lamps next to the sofa, the IV pole is in her room and on wheels so she can move around inside. We even have a little backpack thats set up so she can play outside while eating and no one would even know!!! She just refuses to do them! No clue why. She gets lots of oral snacks and some meals too but we had to stipulate that it MUST be after a feeding. No oatmeal by mouth until after her breakfast feeding. She just can't maintain her weight without the gtube feedings. She has skipped a feeding 2 days this week. It is usually the last one. One was thursday and I was exhausted and forgot to remind her. The other was the day before because she forgot even though I told her 3 times and she said she will. I was packing for the trip to seattle rerunning my checklists etc. If she doesn't flat out lie. I do fine when I can stay up all night through to the next day she does what she is supposed to and don't get up early in the mornings. In fact sleeps until at leat 10am. I have tried being up extra early and short of bein up at 5am everyday I just can't seem to catch her. So needless to say this mommy is but one person and there are 24 LONG hours in every day.
WE NEED HELP.. Help is on its way I am assured but by the time they get all set up I may not need the help as much or will have become so overly tired it won't matter anymore. I have decided though to continue with the process. I have a lot on my plate right now and the extra help no matter how significant it may be.
Hubby has lost medical. We make even on our fixed income to much money by an incredibly stupid $25-$50 for him to qualify. Despite his sezuires and other disorders is not catagorically needy enough to qualify under any other programs. His sezuire med alone is more then $400 a bottle and his stomach med is another $300. His other meds are not so bad but all Rx's have expired now and the doc won't rewrite without an appointment. We won't even touch that one. I have no time to get things seriously looked into which involves fixing my car so i can get to diff appointments. He was recently denied for SSI so I think we are going to have to go the lawyer route if he doesn't just say Eff it and try to find something. I am not sure what we should do and honestly it consumes much of my thinking time which is usually late at night when trying to fall asleep. We need the money that he might be able to bring in from working but finding something he can do safely that he knows how to do that he can get to with no running car at the moment will be the challenge. He used to be a caregiver and the money is good to be honest if he does private home care it can pay more then $10 an hour which isn't bad in our area. But findin a employer to hire him.
It will all work out. It has to. This is what I keep telling myself anyway.
I feel like my life is like a bad roller coaster. Very little thrills and not exactly worth the money I spent lol. This is probably why I haven't blogged much. I feel so negative. I hate being or feeling negative. I think with a little help around maybe I will get to work on the things that make me feel or be negative.
I think I am ready to get a new furbaby. I really miss buddy. I long for him. I didn't realize that getting him would change our lives so much. Now our lives are back to the glum and always stressed mojo. I want to go about it the right way. We were offered to get buddy's brother and even though every fiber in my being wanted to say yes I decided that it would not be wise after talking with my vet. They said that given the history of buddy it wouldn't be wise. Buddy was an amazingly little guy. I think this time we are going to get a rescue baby. The humaine society will be the closest and best place I think to start. We like fluffy babies and if it is fixed it can be a boy or girl. Usually they already have their shots from there so I am told. We were offered a lopso pup for free but I am scared to get another one privately. More on this as it develops.
Hubby and I are going to a party tomorrow for the 4th. BBQs and drinks. Lots of music and Noisey fireworks. Lots of other kids so nina should have a blast. Nina and I even decided to be festive and wear summer dresses. Yes you read that correctly. I am wearing a dress with little shoes and everything lol. I may take a pic MAY even post it... then again may not. Would love to have someone take one of all 3 of us. We will see who knows. I am looking forward to having FUN that is all there is to it. We all 3 deserve it. It is in the evening of course so as long as Nina gets her feedings all in then she can "be like everyone else" and eat/drink like everyone else.
Well I guess I have rambled on enough. Would like to tell my new freind Casie that I will be in seattle Tuesday evening until Thursdays appointment. She has an appointment wednesday for her gtube so they will just keep us in town. If you guys also have an appointment lemme know I will come in early on shuttle if I can. My friend Casie is an amazing mom who shares many common parenting adventures as I do. She is a wonderfull source of information for me and support. Since I have met her I have felt less insane hehehehe. Perhaps she is just as loony as me and we balance each other out but she is awesome. Her lil man and Nina have lots in common too. Check her out at (i have asked her for permission) the link below. You may want to let her know that I sent ya so she doesn't think you are some deranged cyber stalker unless of course you are and in that case go away lol.
TO CASIE'S SITE CLICK BELOW:
http://www.thecaughlincrew.blogspot.com/
Ok that being said...


Be safe my friends and talk soon!
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