Just a quick little note to my 8 year old niece, Angel! HAPPY BIRTHDAY!! It was really on Jan. 24th but my little niece and nephew have very close birthdays so they are celebrating them together today. I hope you have fun!
We found out early this week that Daniel’s previous employer, who our COBRA is through, is switching their insurance plan to a $7000 deductible Feb 1st, no-copay’s. We were never sent any papers on it, we actually found out by chance. It’s basically the cheapest plan you can have and still tell your employees that “you provide health insurance”. With Daniel unemployed we certainly can’t afford this.
So we’ve been on the phone all day with every government and state health plan out there. CHIP, since we have COBRA no matter how poor it is, won’t cover my children. If we drop COBRA then it’s still a 90 day waiting period and Daniel and I are out of luck. Medicaid, we make too much. Utah HIPP, we can’t get coverage because there’s a 6 month waiting period until any of Caden’s pre-existing conditions (which is basically everything) are covered.
So I’ve started canceling Caden’s doctor’s appointments. His Cleft Team appointment coming up, that took an entire 18 months to get, we are going to even though this is going to cost us hundreds of dollars. His eye appointment coming up first of Feb., canceled. His immunizations on Feb. 12th, canceled. I’ve heard that the health department can do these for free, it should be noted though that a week ago in the Salt Lake Tribune our legislators are looking at cutting the Utah Health Department.
So I sit back and ponder about the other families going through this. There are many. Such as the two-year-old Colorado girl who was told by her insurance company that she had reached her lifetime maximum and was being dropped. Medicaid would not cover them because they made too much. The special medicaid they were under because of their child’s extreme medical problems was also dropping her because she had to go to Nebraska for a transplant. The transplant is only done in 4 hospitals in this country and CO wasn’t one of them. So these parents, who have the unimaginable task of being there for their medically fragile child now have to fight with the government, fight with the state of CO to just have them cover the life-saving medical care their child needs. Only because of the media coverage they were able to get did the state of CO step up and reinstate her health insurance. What of those other families that don’t get their story on the news?
Sure we can write letters to our congressmen, our legislators, but it doesn’t become personal for them. Most people with health coverage that have never had to endure or fight with their insurance companies can’t understand the situation. I used to be one of them, I can’t fault them. I always thought that since I paid my taxes, since I had health insurance I would never be affected by this. It’s just a passing thought when you see stories like this in the newspaper. As it should be really, because there are only so many causes, only so many situations that you can handle at one moment.
So what’s a family to do? I’m actually not bitter or angry about any of this, rather disappointed… a little frustrated. It’s not myself or my family that I feel sorry for in all this, it’s the other families that I know who are going through this. Hard working, middle-class people who are trying to navigate the waters of insurance bureaucracy alone, who feel failed by the system and at the same time have the intense burden of also worrying about the health of their loved one. Their child, their husband, their friend.
So little Caden has this thumb on his left hand that’s a bit off. I noticed it when he was a baby. To describe it, I would say it looks like one side of it got smashed and flattened a bit. It’s got a hump on the top and while it’s not that noticeable it may be as he gets older. Our doctors and Caden’s plastic surgeon know about it, it’s fully functional. All the joints move correctly, he can flex it and it’s just another lil’ odd thing about him. I’ve noticed over the last couple of months some odd behavior he does with that hand. When he was younger, before he would pick up an object with that hand, he would rub the object with the side of his thumb… almost like he was trying to feel it.
Yesterday, I noticed that he picks things up strangely with that hand as well, he’s tucking his thumb under. I have a video below to show what I’m talking about. My first instinct is that he doesn’t have as much feeling in that thumb, especially in the pad of the thumb. So he’s using the sides to feel it. It would make sense, if there’s decreased feeling the proper pincer grap might be difficult as he couldn’t feel if he had a grasp on the food. He can’t, certainly, tell us if anything feels different then the other side but it caught my attention.
The other day, when Grandma Warner was over, I decided to get crafty with the kids and we made popcorn ball snowman. Check out the masterpeices below:
Popcorn Snowmen!
We’re starting a new therapy with Caden, behavioral based therapy. It’s basically a positive reinforcement aka rewarding good behavior method. His Speech Pathologist is introducing us to it… and yes it’s very much the same way you train dogs. Now don’t brand me with a “Bad Mom” tattoo on my forehead but it’s the exact same concept. Plus, I love dogs and think of them as very intelligent, sensitive and compassionate animals. You should see how much our dog Darwin adores babies. Our dog is the first one to come running when Caden cries and tries to lick him and whines until one of us comes to pick him up. Darwin is a mother at heart.
This is all happening because Caden has finally passed the 9 month mark in his gross motor development and though we aren’t quite there with comprehension… there’s really no way to tell. His speech may only be at a 6 month level but he could very well be comprehending more then that so we’re going to shoot for that. Yes, Caden is that far behind but he’s making progress. This new therapy is for Caden to learn how to drink from a sippy cup. We are having to use his G-tube for all his liquids because Caden doesn’t “get” what to do with a sippy cup, a bottle, a cup or any liquids in general. So we sit with him 3 times a day and force him to put the sippy cup to his mouth with his own hands and then reward him by letting him play with a toy for 20-30 seconds inbetween. No is not an option and we just reinforce that drinking is a good thing, that he’ll be rewarded for it. It’s a game for him. We are doing this in an effort to one day, hopefully, be able to get rid of his feeding tube.
I had another comment about the “catch up by age 2″ the other day that is tossed around with preemies. As a note, preemies with many complications, who endure long hospital stays, who are born at 1 and 2 pounds do not usually “catch up” by age 2. It’s a frustrating statement and one that confuses and really misinforms a lot of mothers out there who both have preemies and who do not. Caden is nearly 18 months old and while we set goals for him and he is doing very well for his history, he will not catch up anytime soon. I’m okay with this, as long as there is progress. Caden is not my first so I no longer feel compelled to compare him to other children. With Genevieve this was a very frustrating thing for me to watch my 16 month old not be able to walk, stand or crawl while the 11 month old next to her did. But look at her now! You would never even know that she was born prematurely.
I don’t see Caden following the same progress that my first daughter made, nor do I expect it. In fact I can be incredibly frustrating to his therapists because of the vague and general “goals” that I set for him. It’s not that I don’t hope for or expect them to happen, I just know that things happen on their own time and I would rather be pleasantly surprised then frustrated. We don’t know if Caden will ever be “normal” or ever catch up, being so young there is still a lot in his future that is a wait-and-see game. I do have to say that it’s amazing watching a child really have to learn and work at the most basic of skills though. I know that, as a mother of 2 other children, I took for granted how easy the learning process was for them. From sitting up, to talking, to eating!! Watching a child really struggle and try to grasp concepts that we do everyday without much thought is incredibly humbling. I am really grateful to see it though. To appreciate those moments when I can see the connection happening. My 2 other daughters really get a kick out of it as well, they love to help him and demonstrate how to do things. They are great teachers!
I should really know better then to have ever uttered the words “we’re done with surgeries for a while”. I’ll back up a bit, so today was another Preemie Clinic appointment for Caden. It was for his eyes. I believe I explained a few months back that we were going to have to watch one of Caden’s eyes (his left) because the blood vessels in there were too tight. This is from his ROP (retinopathy of prematurity) which was pretty significant at a Stage 3, because of this there is scarring in his eye. We were borderline surgery but his eyes didn’t get worse so thought we were in the clear. The glasses never came as a big surprise but for some reason when I heard Dr. Larson (opthamologist) talk about his tight blood vessels a few months back all I thought was that if it got worse we’d have to have a stronger eyeglass prescription. Thinking it through now, the scarring the ROP caused wouldn’t mean a stronger eyeglass prescription but surgery. We certainly don’t want his retina to detach, worse case scenario. So Caden will have to be followed every 3 months for… I have no idea how long. If it does get worse then there will be surgery. It’s just a waiting game, same as everything else. So I was a bit taken aback by the talk of “surgery”. Only because I had thought that I wouldn’t hear that word for a few years.
Caden is doing wonderful though. He’s pulling to a stand and cruising along the couch, no independent steps yet but it’s only a matter of time! We are really laying on the sign language for Caden right now to try to get him to communicate with us. Feb. 1st Caden is 18 months old and for sounds we have Ga and Ha. No pointing or waving yet but hey, I’m not complaining because the little sounds he does make are the cutest in the world when he does it! He’s a social little guy, loves to smile and is such a stinker when it comes to feeding himself. If it’s dry like a cracker or bread he’ll pick it up and put it in his mouth himself, but if it’s wet or mushy, say pears or cooked carrots, he won’t touch them. It’s also interesting that he won’t eat anything from our fingers. It has to be on a spoon. The drinking still escapes him, the poor boy has no idea what to do with a sippy cup whether it’s holding it or how to drink from it. He just sits there with his mouth gaping open waiting for me to pour it in. It’s really quite funny.
The job search still continues, we’ve added 2 in Florida and Pennsylvania to the list now. I do apologize as yes we have Illinois in there as well and I forgot to mention it. I’ve had someone ask me why so many states but really… the interview process is long and tedious and until we have an offer we won’t stop applying for jobs. We’ve been talking to some companies since early Nov. and with the holidays it just made the whole thing even more drawn out. Soon we hope, soon.
And a big HAPPY BIRTHDAY to my little nephew Jacob who turned 5 yesterday. It’s exciting that Adessa and my nephew will be in Kindergarten at the same time this upcoming school year. I always wanted cousins the same age as me but they were all much older. I also consider 5 to be a big birthday, because they are suddenly too old to be “toddlers” now. I just consider it a crossing-over point where they are now big kids. 
So someone asked me the other day what blogs I visit. Yes I have the family and friends listed to the side but there are a couple of gems that I do go to daily for various reasons so let me share them with you.
- Cake Wrecks This blog is fantastic. It’s not about rants, personal updates, politics, religion, current events or anything you find in a usual blog. This is a blog about Cake Wrecks. Professionaly made cakes gone horribly wrong. I first came across this site about 2 months ago. I read the ENTIRE BLOG from start to finish and have never laughed so hard in my life. It’s that good. You will love the commentary, you will love the cakes, you will spread the word because this blog is all about goodness, hilarity, and will actually inspire you to seek out your own cake wrecks.
- Preemie Experiment This blog is personal to me and I imagine a lot of us preemie moms. You will be educated, you will ponder, you will consider the complexity of prematurity and the extensive issues and problems that are faced. I have to be frank and say that if you are looking for the “miracle of a preemie” this blog might not be for you. It’s hard hitting and done by a mom who has 2 preemies herself. Preemies have life-long issues, some unstudied, some being discovered and some documented but the information truly isn’t shared as much as it needs to be.
- Musings of a Distractible Mind I like Dr. Rob. He’s funny, he’s light-hearted, he’s educational, he’s honest and I like his view of medicine and patients. Good reading and very informative.
- Respectful Insolence Another medical blog that I read but you have to have a thick skin here. If you are anti-vaccine, into alternative medicine, accupunture, chiropractors and more then you probably should NOT visit here as he is fiercely against all these.
- Hair Today This is a blog about kid’s hair. Want inspiration for those little girls of yours? This is it. It’s fantastic. It gives you steps, so be daring and try one!
- Gaming blogs I should just list these out because I’m not sure how many would be interested in these except for me! 
Game|Life , BluesNews , Peer IGN’s Blog
There you have it.
Good news, Caden is feeling much better. His eczema is still pretty bad but he’s managing it well. In other news, I have officially given up hope of ever being well again. For the last 2 weeks I have been miserable with probably the flu. No, I didn’t get my flu shot this year and I’m kicking myself for it! Add on top that everyone in the house has made their rounds with being sick and we’ve been pretty much housebound.
Adessa is back at preschool and Gena actually doesn’t get back on track until Jan. 28th. Yes, she has a whole month off of school. She is, of course, reveling in it while I am cringing. Granted the Christmas presents are a great distraction and keep her occupied with her new games, books and toys.
The job search continues, we are currently in talks with (I’m just going state-by-state here because I’ve lost track of names and companies) North Carolina, Arizona, Georgia, Texas, Oregon, Idaho and a couple in Utah (yeah!!!) The next couple of months will be interesting to say the least. We’ve all ready started getting the house ready for sell, it’s not a definite thing yet but I’d like to be prepared rather then trying to cram selling a home, moving and relocating into a week or two.
New Year’s Eve was fun though. My parents came over to hang out and we played games… come to find out I am fantastic at Pictionary. Who knew?! I have no New Year’s Resolutions this year as I would like to simplify life. Unless that could be my 1 overall resolution, to simplify. Hard enough to plan for the future when you don’t know what the next few weeks or even days will bring. I am thankful that Caden is over the majority of his surgeries, so this year should be pretty quiet, besides the enormous amount of doctor/therapy appointments that will continue. But that’s all normal enough now. So I wish everyone out there health, happiness and sanity to get through this next year!!