Wednesday, June 29, 2011

Igor JUST has a funny shaped head!! Thank God.

Yeah, I know not the most flattering title to put on a blog post, but it's the best answer and quickest thing to read.

The craniofacial doctor called just about 20 minutes ago and confirmed that Igor's CT scan results were normal, he just has an unusual shaped head "like mine" he said, referring to himself. I didn't notice he had an odd head, but I guess if your a craniofacial doc you know if your head is "normal" or not. The eye doctor also pronounced that Igor does NOT have the eye bulging thing either so we have pretty much ruled out any craniostynosis diagnosis. Woo, I don't have to tell you what a relief it is to get that news.

The ruling out of the craniostynosis also puts the genetic doc's best guess at a syndrome at odds as well since that is a major marker of the his preferred guess. We still haven't done the genetic testing yet. It was not approved by our insurance as they deemed it "experimental" I contacted the genetic counselor lady and she had the doc call the insurance company who then agreed to do some of the test (probably the cheaper part) I just got that news yesterday afternoon. However with the skull issues not being a factor I don't know if the genetic doc will want to run testing in the same strain. We'll see, I have craniofacial and opthamology sending their reports on to genetics. I'm certainly not going to drive up to Milwaukee for a blood draw right away when it appears things may have changed.

Makes my mind SO much lighter. I feel like a HUGE weight has been lifted and the summer no longer has this horrible dangling nightmare hanging over it. I'm prepared for a genetic diagnosis, just not a major skull remodel surgery.

Speaking of remodel.... the camper is making headway. We have now finally sealed the leaks (we think) put the floor down and have installed a bulkhead wall that divides out some pass through storage. We cut the vinyl floor last night but could not put it in due to the fact we had to put some patching compound on a transition area to level it out and that had to dry. We also found some mildew growing under the vinyl in another area (wasn't wet, wasn't soft, old leak we are guessing that had been fixed) so that got scrubbed with some bleach water and needed to dry out. We are down to putting the furniture stuff back in and system checking everything. Just in time for Hubby to leave on his long training trip. Guess I'll take it on it's maiden camping voyage alone - that should be interesting. Here's hoping the van can tow it!

Well I suppose that's it for now. I just wanted to give an update and thank you for the prayers.

Friday, June 24, 2011


By this time next week we'll have some sort of idea on Igor's skull issues. The waiting is the hard part, I want action. Why I can't just barge on up to Children's and put him in the machine to be scanned, have the doc look at this eyes and be done. Then I could plan. I'm a big planner. I'm not one to have every minute of the day scheduled but I do like to know roughly what's going to happen. Igor and I are alike in that matter (though he likes things timed to the nano-second) For this weekend I'm trying to not to worry and think about it. This blog post is gonna be my last worry session until we have some real news. I REFUSE TO GOOGLE!!! However my mind keeps drifting back to brain injury and while they may not be technically doing anything to his brain it is too close for comfort. I've delt with brain injuries, my mother had a stroke, and while she survived and is doing well she's not the same person I grew up with. That's my biggest fear is to have my little Igor handed back to me and not be the sweet little kid who's kisses have a daily theme.

A good distraction this week has been Emma. Emma is a friend's dark chocolate lab that has stayed with us this week. She's a good dog and likely the most calm labrador I've ever been around that wasn't 102 years old. Emma has been great with the kids, putting up with all their crazy antics with aplomb. I will say Emma comes from a household with three kids though - two of them roughly Sonny Boy's and Igor's ages so kids are old hat to her. Sonny Boy and her have really bonded and she's been sleeping in his room (and bed) every night. Gonna take me a week and a gallon of Fabreze to remove the dog smell from there - she's not dirty just doggy. Emma goes home this evening.

Work on the camper continues at full bore. We are having a hard time finding the source of the water infiltration. We fix one issue, spray down with the water hose and then find another. Ug, we've used a lot of sealant that doesn't come off your hands with anything short of a sandblaster. We have all the supports for the flooring in, insulation cut and are ready to lay the floor but just keep finding water leaks. My hopes for dragging it around Northern Wisconsin for a few weeks in late summer are slipping away.

We have finally picked out a color scheme for the house. I did paint up one window on the street side and have had compliements on it. I guess I should post a picture, but you know me and putting pictures up. I've taken the heat gun and removed paint from some of the detail work here and there. 120 years of paint build-up can kill a lot of tiny details in woodwork. I still have one section to do. I didn't really expect painters to take the time to get things as cleanly done as I have done them, much less strip to bare wood, they'll just get the loose paint.

Our new neighbors will move in this weekend. They closed on the house last week and spent last weekend pulling up old carpet and cleaning. We went over and met them and they seem like a nice young couple. No children, much to Sonny Boy's disappointment as he wanted some playmates close by. Sounds like they have big plans for the house which is nice to hear as it needs some work and a little love. They got a good deal on it, I like the lot much more than our own and wish the house would have been available when we were house shopping. I hear they are going to paint which makes me happy as there has been an epidemic of vinyl siding lately with even our next door neighbor pondering it (it would RUIN his house) so I've been trying to gently talk him out of it.

Well I suppose I need to get off the computer and do some chores. The kitchen and laundry are my never ending battles around here, but I suppose they are for everyone. Maybe I'll bake some cookies for the new neighbors?

Wednesday, June 22, 2011

Well at least...

Well at least we managed a scheduling miracle. Today the CT scan scheduler lady and I managed to schedule Igor's CT scan on the same day as the eye doctor appointment next week. It will be a long day hanging out in Milwaukee as there is a little bit of time between appointments, however at least it won't require driving back into town for another 15 minute appointment. Going to call the lady at the genetic clinic who is supposed to be fighting the insurance for me and see if we can get the blood draw for the genetic work-up while we are there as well then it will be three birds with one car trip.

Thankful Hubby can work from home that day and leave Sonny Boy here to hang out with his Dad (i.e. watch a lot of TV and play too much Wii) but it will beat wrangling two kids all day in a boring place. Not to mention Sonny Boy is much harder to deal with when bored.

That's about it.

Thursday, June 16, 2011

Worrisome Times

I'm beginning to hate Children's hospital. It seems my interactions with that place lately have not brought good news. Every appointment brings hope that I'll be looked like some over paranoid mother and sent home. Unfortunately that hasn't happened in a long while.

This year Igor has seen orthopedics for the broken leg and to get SMO's, Opthamology for continued monitoring of vision, Cardiology which diagnosed a heart condition, Genetics which has diagnosed a connective tissue disorder with only a good guess as to the actual name - waiting on expensive genetic testing we are still waiting insurance approval on. Cranio-facial who did say there was no cleft palate (a tiny bit of good news) but there is definite craniostenosis - the sutures in the skull closing too soon - which could be putting pressure on his brain. This is forcing another trip back to Opthamology to rule out some sort of eye ball bulging (there is a fancy name for it but my brain is fried from trying to keep my head together today) if the eye-ball bulging is there he will definitely need surgery and I'll be getting a phone call in the next day or two to schedule a CT scan to see how extensive the cranio-stenosis is and see what that brings. Yay (that's supposed to be in the sarcasm font that should be existent on blogger) Send up some prayers that Igor's funny shaped head is simply funny shaped. I want an MD to say we've over reacted.

This comes on the tail end of finding out that my high school boyfriend of six years passed away on Saturday afternoon. I meandered back and forth for a day or two if I should load up the kids and drive down to Arkansas for the funeral. In the end I decided against it. It's a sad situation as it seemed he drank himself to an early grave at age 39. A wasted life. My mother attended the memorial tonight and said it was sad. Perhaps the only good thing to say is that he never had children who would have lived through the hell of an alcoholic father and the loss of him young. My mother said that somehow his family had come to the conclusion that I had been killed in an accident up here in WI and thought I'd been dead for several years. Must have been quite shocking when I friended his sister on Facebook a few months ago. Like Mark Twain said "The rumours of my death are greatly exaggerated".

Thankfully the overly stressful events of the week haven't sent my body into a tailspin. Mornings have been rough with a couple of nights bad sleep. My allergies are flaring up something horrible but eye drops and Claritin are helping to keep them in check. I've had other friends in the area complain about allergies lately too, seem to be rougher than normal this year.

We have cancelled our plans to take Sonny Boy to NYC and DC while Hubby was out east. The plane tickets are outrageous and couple that with the upcoming medical expenses and complications (which we hope we are just being too careful with) we don't want to buy non-refundable tickets. Hubby's corporate headquarters are in New Jersey so they'll be other trips to the east coast to piggy back on at another time.

In response to not taking the NYC trip we've promised Sonny Boy a long camping trip. I finally conned Hubby into letting me get a camper. The camper wasn't too old but had rotten floors but was otherwise beautiful. Hubby agreed to let me get the camper as it was cheap due to the floor issue and is working on getting the floor repaired. I'm excited to get it up and running, Hubby is charged with getting it operational by the time he leaves for his training stint. He fusses about it, but I know he really kind of likes the challenge of the project as all the house projects we've had this year have been given to contractors. Igor is excited about the camper too and keeps asking questions about where we'll all sleep and can we do XYZ and when we go camping and the like. Sonny Boy is pretty blase as he proclaims he wants some huge giant motorcoach fit for a rock star.

So there's my worries on a platter. Maybe I can sleep tonight, I don't know. Maybe I should just go take a benedryl or two and kill two birds with one stone - sleep and allergies. Looks like my summer just got interesting in a way I did not intend.

Wednesday, June 15, 2011

Window #1 or Window #2

You see we are painting and can't decide on a color scheme. The joy of a 120 y.o. victorian, gaudy colors and elaborate details are the norm. We've driven around town and taken pictures of the houses we like. We stopped one person in their yard and asked and was rudely told "no" we couldn't get the name of their paint colors. I've checked out books from the library and purchased from the internet. We have EIGHT quarts of paint of different hues and have layered them on the side window in a variety of contrast. Hubby doesn't like my scheme, I'm not wild about his. Neither is either one of over thrilled with our own scheme so the debate rages on.

I'm threatening to take our two favorite pallettes and paint them on two different windows on the street side of the house and mark the windows 1 and 2 and place a sign that says 'VOTE" with a magic marker attached to the sign. I mentioned this to a friend who regularly drives by my house (most everybody in this side of town drives by my house often) thought this was a grand idea. After reading all the books and staring at our patchwork mess I'm beginning to think going with the masses seems to be the easiest, we do live in a democratic society and honestly the neighbors and the passer-bys will see the paint more than we will.

Monday, June 6, 2011

Kiddo Update

As the school year draws to a close I suppose it's time to give a big update on the kid's progress through life.

Sonny Boy is doing well. Finishes 1st grade this year and has done superb. Grades couldn't be better, he has a good grasp of reading now and math skills that will soon surpass his mother's. If you ask him he will tell you he didn't learn anything new this year, that it was all stuff he learned in kindergarten, but I just think he doesn't really realize the material is progressing. He certainly wasn't learning addition and subtraction and writing little paragraphs in kindergarten. Behavior wise he's done well at school despite the ADHD. Sonny Boy's teacher says she does have to get him back on track occasionally and he does end up losing some recess time occasionally to finish his work, not because he's having a hard time with the work, just a hard time focusing. He has had to sit out a little at recess for playing too rough at times but it hasn't been anything the teacher has felt the need to let me know about and we've been in contact via e-mail several times for numerous things. A good school year, I hope 2nd grade goes as smoothly. Baseball season is in full swing. Sonny Boy is playing machine pitch and is doing well. I would say he's in the middle of the pack for skill level and he has a good understanding of the game and where the play is. He does have some wild throws occasionally but he's still getting the hang. Summer looks to be busy with VBS, scout camp, vacation, swim lessons, baseball and of course swimming as much as he can con Mom into taking him to the pool. We went the other day after school and it was like most of his 1st grade class had convened and he had a good time.

Igor is moving along quite well also. Pre-school finished up a couple of weeks ago and he's making good progress. He can identify all his letters, count reasonably well, all colors, shapes and sing several songs etc. Doing well considering he missed several weeks due to the broken leg. Next year Igor will attend preschool three mornings a week as he misses the cutoff for kindergarten by 10 days. Really I don't see this as a problem because I don't think he's ready for kindergarten, he's a little emotionally immature. Igor is now wearing SMO's full time. They seem to help his balance and stability. We will go back to the orthopedic doc in September to evaluate their effectiveness but I imagine they will be a long term addition to his wardrobe. A week ago Hubby and I took Igor to see a genetic specialist at Children's Hospital and the doc - a nice British chap - declared that Igor certainly has a connective tissue disorder. He's not totally sure of which one as there are lots. The one he did mention doesn't quite fit Igor (I think) so we are waiting on insurance approval to get expensive genetic testing done. In the meantime we will take him to see a cranio-facial specialist to see if there is anything that needs to be done with his extremely high-arched pallate as anybody with two brain cells can see that is going to be an orthodontic nightmare in a few years. Igor is going through a defiant stage and testing his boundaries lately which is getting old. He's always been a very compliant child so this is new ground with him, not new ground for us though - we've been there and done that with Sonny Boy. Patience and consistency is our mantra lately.

We grown up kiddos are getting by too. Hubby is busy with work, but it's going well. He works from home a couple of days a week now which is nice as it save a ton of money on gas. I am getting to hate the ring of his cell phone though because it does seem to ring at unfortunate times but that's the nature of the beast. I've been busy shuffling the kids to and fro, house and garden work (though the roofers have MANGLED my flowerbed) and just generally maintaining us in a somewhat clean and orderly fashion. Nothing exciting, everything exhausting. That could be a blog post title.