My Blakey Bear

Well it just wouldn't be life as we know it without Blake seeing a specialist. I've written before about Blake's fever syndrome. For those who don't know Blake was diagnosed with PFAPA about 2 years ago. PFAPA is a fever syndrome that kids can develop around the age of five. They outgrow it by the age of ten. Blake's started exactly a week after he turned five. He spiked a high fever (probably about 103) with no other symptoms. With it being winter time and cold and flu season we didn't think too much of it and it went away after a couple of days with ibuprofen. A couple weeks later, it was back. Same thing happened. A couple weeks later, the same thing. Growing tired of our new friend Mr. Fever I decided to take Blake to the doctor. We had new insurance so I had to pick a new pediatrician and I chose one that was a younger, newer guy, thinking maybe he would have some hip, fresh ideas as to what the hell was going on. Blake was poked and poked some more by the new doctor with McDreamy hair but nothing could be found. In the mean time the fevers continued. Most of the time they would also bring very enlarged glands in his neck. So large he would have to turn his head to the side to swallow. Every 2nd or 3rd Friday we could expect another fever and another few days of preschool would be missed. Spring came and there was talk of MRI's and leukemia.

We were getting seriously worried. The fevers would totally knock Blake out but he would not have any other symptoms. Then one day a neighbor who did transcription for a children's hospital IM'd me and said, "Hey, I just did this transcription and these people are going through what you guys are going through with Blake. Their daughter has PFAPA." I checked it out and it was Blake to a T! Fevers like clockwork with no other symptoms. I called the doctor's office and spoke to the nurse. She had never heard of it before but would let the doctor know. He sent us to a rheumatologist in Iowa City at the Children's Hospital where Blake was positively diagnosed with PFAPA and was prescribed generic Tagamet (yes, the heart burn medication). He has been fever free since Thanksgiving weekend, 2010.

At his last appointment a few months ago he was taken off of his meds and we were told unless he has another fever between now and his next appointment in October, he will be considered "case closed". At least at that clinic. What the rheumatologist also found is that Blake is very hyper mobile or double jointed. This is not necessarily a problem but it could be and we were referred to a genetics specialist, which is where we went today.

Blake has now been diagnosed with Ehlers Danlos Syndrome--Hypermobility. There are nine different things they check your mobility on. If you are hyper mobile in these areas, you get one point with a possible score of nine (obviously). Blake scored an 8. The concern with Ehlers Danlos is that Blake can be prone to joints popping out of place easily, joint pains, etc. It causes your ligaments and muscles to stretch out and sometimes, with constant stretching they may not "go back" into place.

There are different types of Ehlers Danlos Syndrome and his hyper mobility is the least serious, thank goodness. This will just mean that Blake will need to be extra careful in life. No prolonged periods of hanging from the monkey bars, no wrestling, those kinds of things. He will also need to have an ECHO of his heart taken every year until he reaches adulthood and stops growing. This is because his aorta can also become enlarged, which is obviously not good. Should that happen, however, there are medicines he can take to help treat it and it's also better to know that kind of thing, rather than leave it untreated.

Another thing we found out is that Blake is flat footed, something we've known since he started walking but never really had checked out. This along with the EDS can cause a lot of joint pain for him in his knees, ankles, legs, hips. No flip flops or sandals for Blakey, just good tennis shoes with great arch support.

I am relieved to know finally that he does have this, as his rheumatologist talked about it with us for a while but we couldn't get in to the specialist to get it checked out. I'm sad that this may stop him in the future from doing something he really wants to do and I'm worried that it may cause him problems as he gets older. I'll feel better once we start getting the ECHO's of his heart and can see how that progresses.

Who needs Colon Blow when you have a surgeon named Fierce?

So I had a few of my insides removed recently. It wasn't my choice, they practically begged to be removed. Like a group of bad teenagers misbehaving at the movie theatre they had to be ejected. A few weeks ago, January 12th, a Thursday, to be exact I worked all day, came home, ate dinner and about a half hour later I was completely fine and then the next second I had horrible stomach pains. I sat at the table for a few minutes then decided I REALLY needed to lay down. I lay in the bed thinking, "Great, now I have the flu." I thought maybe a hot bath might make me feel better. Nope. Then I sat there thinking, "If I could just throw up I KNOW I would feel 1000 times better." Well I didn't puke and I couldn't seem to make myself do it, either. The next day I called in to work and sat miserably in the recliner. I still had an appetite, which started me thinking that this was no kind of flu. By Saturday I felt no better. I had a parent meeting for Girl Scouts in the morning and a couple times as I sat there I thought, "Oh god, this is it. I'm about to puke. I wonder what these snobby moms will think if I run over there to the trash can and hurl. Maybe I should just run outside. Maybe I should just curl up on the floor and die right here. I am in a church after all. Seems appropriate." I ended up sparing all of us the awkwardness and didn't puke or die. We had a kid's birthday party to go to at 11 but instead we made reservations at our nearest Emergency Room. After peeing in a cup, getting blood drawn, an ultrasound and ordering a delightful IV of morphine and an anti-nausea med, Dr. English Accent said I have a pretty bad bladder infection and maybe something could be wrong with my gall bladder. "If you're not better by Thursday, come back and you will have won yourself a CT Scan." The morphine cocktail had me feeling not so bad when I left, so armed with my new antibiotic, vicodin and anti-nausea prescriptions we got some dinner and headed home. 

Sunday had me feeling pretty much the same and on Monday morning I felt about 50% better. Knowing I couldn't take the vicodin at work I took some anti-nausea pills and headed out. I told everyone my story of going to the ER, "They think it's either my really bad bladder infection or maybe my gall bladder, so we'll see." I said. I went to lunch and got really, really tired so I put my head on the break room table and consequently passed out. I woke up about 20 minutes before my lunch was over and as my boss was walking into the room. He was kinda chuckling at me and he said, "You know what. I think you're done for the day. Why don't you go home and get some rest." It seemed like a really stellar idea to me so off I went. I came home and slept the rest of the afternoon away in the recliner. Adam made dinner and I ate very little. I really had no appetite since I left the ER on Saturday afternoon. 

That night as I slept I woke up around 3am and started to roll over in bed when I got a sharp pain on both sides of my stomach. It only lasted for a few seconds. The next day I felt HORRIBLE and called in to work. I   decided to try to call my regular doctor and ended up crying on her nurse's voicemail. "That's it, we're going to the ER." Adam said so off we went. 

After hearing my story and what had happened at my last ER visit they ordered a CT Scan right away and I began drinking the lemonade/contrast dye. A couple hours later I had my scan and they said it would be about 30-40 minutes before I heard the results. Fifteen minutes later my ER doctor literally came running into my room and said my appendix had ruptured and that they had already called the surgeon. About 10 minutes after that my surgeon, Dr. Fierce, was in my room telling me something about my colon, my previous hernia, which was back, btw, and that I would be in the hospital for the next three to seven days. Wow. 

My nurse asked if I was in pain, (duh) and gave me some morphine in my IV. I ended up FINALLY throwing up from the morphine and just like I had thought five days prior, felt SOOO much better. 

At about 5pm the wheeled me to the OR and almost as soon as I was on the OR table I was under anesthetic. My appendix had ruptured a portion of my colon so Dr. Fierce had a lot of crap (literally) and infection to clean up, and he also had to re-route my small bowel to another part of my colon. The coolest part of all was they repaired my hernia with a new mesh made from the back of a cadaver. Adam says this automatically makes me part zombie. I woke up after 10pm in my room and in a lot of pain. 

The next day I was up and walking around. Not a lot but they said I could get out of there quicker if I got up and about and I wanted the HELL out of there. My blood sugar was really high after surgery so I was the proud owner of an insulin drip for the next 24 hours, along with my 7-day non-stop IV antibiotics. I also got to have my finger pricked every hour on the hour and by the time it was all over my sugar had dropped too low and my finger tips were bruised. I graduated from ice chips to popcicles, (which somehow we had to buy ourselves because the hospital didn't have sugar-free ones) to a clear liquid diet. That was great for about two meals but by the time dinner came on day two, my blood sugar was about 65 and looking at chicken broth and jello made me want to gag. Also I became anemic and had to have two units of blood. 

By the end of day two things on the insides were moving. They were actually moving too well if you know what I mean and because of that I got to move up to a little bit better liquid diet. I was moving and grooving up and down the halls, crapping my brains out and watching a whole lotta Lifetime Movie Network. Lifetime television is great because you can fall asleep watching it and you don't really miss out on anything. By the time you wake up someone is still getting abused by their boyfriend/husband, they are still escaping to a whole new town to escape with a new identity and they are going to find a new love. Same story line, just different actors. 

The whole time I was also being treated to some pretty great narcotics. Narcotics that would make me hallucinate. Not Fear and Loathing kind of hallucinations, just the kind that would make me smile as I closed my eyes and prepared to pass out. Most every hallucination involved Blake. At one point I could see Blake dressed as a Beatle circa Sgt. Pepper wearing John Lennon sunglasses and a nehru jacket. Kinda like this:

He wasn't actually doing anything. I could only see him from the shoulders up. Just sitting there. 

Come about Friday there was talk of me being able to go home on Sunday. I was stoked. I was also eating regular meals, if you want to call hospital food "regular". I was also getting pretty pumped up for the world premier of the Lifetime movie about Drew Petersen starring Rob Lowe on Saturday night. 

By the time Saturday rolled around I had blown out three IV's. Apparently antibiotics are pretty hard on them. My nurse tried two other places to put in another IV and she couldn't get it done. "If we can't put in another IV you're going to have to have a central line put in your neck." I was freaking out. They called in the nursing supervisor and she got an IV put in what she called the last place on my body she could possibly use. It was in the fold of my elbow which meant I pretty much had to keep my arm straight. My sister came to visit around 5pm on Saturday and my hospital dinner was actually pretty good. I was pumped up for my Saturday night movie night. My plan was to visit with my sister, have help getting a shower and settling in for my movie. My sister left around 7 which gave me an hour before the movie. As the nurse wrapped up my IV and got everything ready my IV pump started beeping. Turns out she didn't plug it in after my walk earlier so it the battery was almost dead. I was going to have to let it charge before my shower. I ended up missing my movie. Bitches. 

I was released the next day, as planned and I spent the week taking recliner naps, watching TV with Adam and running to the bathroom. I came home with a drain still in my wound which I was hoping would get removed at my doc appointment that Friday, but they had to leave it in. I did get about 7,000 staples removed, however. Also my wound isn't quite as healed as they would like so I had to go back to the doctor again yesterday. I went back to work this last Monday, still just a bit sore but feeling soooo much better than the last time they had seen me sleeping in the break room. 

I got my drain removed on Friday and have to change the bandages on my incision twice a day but I am feeling a little better every day. I'm finding things that I can and cannot eat very well and I'm looking forward to the day I'm back to "normal". 

The Scoop

I've missed not writing in my blog but I've made a resolution this new year to take 10-20 minutes once a week and post an update, if for nothing else than to share something crazy one of the kids has said. For this post I want to tell you about my new job. That's right, no more 3rd shift! No more weekends! No more holidays! Six months ago I got a job as an administrative assistant/receptionist for a senior center and I ab-so-freaking-lutely LOVE it! We are a non-profit so I don't make as much as I would like to but I wouldn't trade it for anything...well, I would trade it for a big lotto jackpot, I'm not stupid, but I would probably still volunteer there. You know, when I wasn't laying drunk on a beach somewhere.

Anyway, the facility I work at is beautiful. Everyone who walks in our doors that has never been there before always ends up commenting on how really cool it is inside. It's built to look like a town square. Our ceiling has been painted by a local artist to look like the sky. There are street lights and beautiful hardwood floors. Also the hallways make a large rectangle for those wanting to walk for fitness. 11 laps and you've walked a mile. There is a cafe/coffee shop, art room, ceramics room, a fitness center, game room with pool tables and a large dining hall.  We also have companies that have rented space within the building that serve a lot of the seniors as well as the community in general such as a beauty salon, a medical clinic and a blood center. Our large hall is booked out often for events such as wedding receptions, birthday parties, etc.

The members are so fantastic. They have completely busted thru every stereo-type I've had about seniors, especially after working at the hospital. I sit at the front desk so I see pretty much all of them as they come in the door and while I don't know all of their names (yet) I do know quite a few and I think they ALL know mine. I love sitting there and hearing "Hi Amy!" "Good morning, Amy!" "How's Amy today?" over and over. The entire staff is great. My first week there I also had to finish up my last week at the hospital and I told all of my friends at the hospital that my new co-workers act like the employees of the hospital should act. Everyone is friendly to everyone and everyone only wants to help everyone else, no matter who they are, a co-worker, one of our members or even a stranger off the street. Of course we all have our moments sometimes, I don't want to make it sound like I work in some sort of fairy tale land, but for the most part it's pretty damn great.

Of course I did have them wondering what was happening about a month after I was hired when I woke up on a Friday and I couldn't open my eye. It was all crusty and gross. "Great. Pink eye." I thought. So I called in and headed to the express clinic where I was told, "Yep, it's pink eye. Here's some drops, you'll be good to go back to work by Monday." Come Monday my eye was still swollen but I was told I was no longer contagious so I headed in to work. Well our senior center also has an adult day center and I wasn't there 5 minutes when I was sent home by the RN from the day center. "Come back when you're better. Just in case." I went home, called my regular doctor and she saw me late that afternoon. She was a little worried by what she saw so she referred me to an opthamologist. My appointment with them was the day after that and by that time my eye looked a little something like this:

I couldn't open it much. Things got pretty interesting at the eye doctor's office. I was called back, the doctor came in, took a quick look at my eye without touching me, asked what happened and she then told me what I had has gone viral, it was EXTREMELY contagious and that it was probably going to get worse before it got better and that she can't prescribe anything for me. Oh, and it usually lasts about 2 weeks, at least. TWO WEEKS??? I've only had this for...one, two, three...five days and I still have another...a lot of days to go???? Then she called in a nurse, told the nurse I had some fancy word for "the funky eye" and please escort me to the door to ensure I do not touch anyone or anything. The nurse and I stopped by the front desk, she told the receptionist I had a fancy word for the funky eye and, "Please be sure to wipe down your entire work area after processing her paperwork." From there she actually did walk me to the door and she told me I would be billed for my visit. 

WOW.

The next day, (Wednesday for those of you keeping track) my eye actually hurt. Up until this time it didn't really hurt at all but Wednesday was when it started to feel like there was sand under my eyelid and the swelling was putting a lot of pressure on my eye. Also until this point all I had pretty much been doing at home was washing my hands constantly and doing laundry. Wednesday afternoon I ran out of paper towels (from drying my hands) and laundry soap. I had to go out in public. I donned a pair of shades (which almost didn't fit, by the way because my eye was so swollen it would brush up against the inside of my sunglasses every time I blinked) and I headed to Wal-Mart. By Friday I noticed a big difference in my eye. It was actually looking better! On Saturday I was even so brave as to wear makeup and on Monday I went back to work. Two weeks, my ass! They don't know what caused it but I told everyone on Facebook that it's because Adam most likely farted on my pillow, and that's the story I'm sticking to, kids.

Next up...a surprise trip to the windy city!

Acne

Because he's a caveman and can't be trusted to be at home alone with Emily for a couple hours after school, Blake goes to the YMCA Kid's Club when school gets out everyday. Then I pick him up in the gym when I get off work. It's sort of expensive when you think about the fact he's only there for 12.5 hours a week but we don't have any other choice and it's only until Adam gets laid off this winter.

So yesterday I picked Blake up and he seemed kinda run down, kinda tired. I asked him what was wrong and he said they made him play "The Screaming Game." Sounds like something I play in my head about three or four times a day at work. He said basically they scream and run around and that he didn't want to do it but the lady told him, "I didn't ask you if you WANT to I said you HAD to."

"Screw you, 19 year-old chubby girl!" is what I thought in my head. Blake said it gave him a sore throat,  a headache and made it kinda hard for him to breathe. (Just before the end of the school year, Blake was diagnosed with activity-induced asthma. It's not usually an issue but he occasionally has trouble breathing when he's running around.) When we got home he said he still felt yucky so I said, "You know what? Next time that girl tells you you HAVE to play tell her your mother said you don't have to because last time it made your throat hurt and it was hard for you to breath afterwards because you have asthma." I said, "Don't say it like some snobby kid, just tell her nicely and ask if you can just sit in the corner quietly while they play."

Flash forward to this morning. Blake's second mother, my 10 year-old daughter Emily said, "Now Blake, if they ask you to play the screaming game, what are you going to tell them?"

"My mom said I don't have to because it makes my throat hurt and plus I have acne."

Lemme  know how that works out for ya, buddy!

memory

I've been reading a blog a young woman has been writing; a woman who's husband drown just a year ago. He was only 34 or 35 and a famous cellist who played with John Mayer, Coldplay, Katy Perry to name a few. I've posted the link to that blog here before. Today I was catching up on the last couple days of her posts and something she said struck me:

We thoroughly critiqued each movie that we saw afterwards but I had a very bad memory in that I never remembered which movies I had already seen.  You were in charge of telling me, "You already saw that...don't you remember?"


That's totally Adam and I. I RARELY remember movies I've seen. I'll always ask him, "Have I seen that?" "Yeah, don't you remember? They were stuck up on that ski lift and there were the wolves and stuff??" "Ooooh yeaaaahhh!!!" Sometimes we need to rely on others in ways we don't realize. Thanks Adam.

Check it out!

My pal Allie over at http://www.wardrobeoxygen.com/ is having a contest to try out COVERGIRL's new LashPerfection mascara. Go check it out. You won't win, because I'm planning on winning but you can dream, I guess. lol

http://www.wardrobeoxygen.com/2011/10/review-and-giveaway-covergirl.html

10 Years

This weekend I was gathering up laundry in the bedroom when I came across a box of pictures that I had shoved under the bed long ago. They were all (or mostly all) pictures of Emily when she was about two. Looking at all of those pictures and knowing she was turning 10 on Monday I realized they represented a lot of hopes and dreams I have for my little girl. (Don't tell her I just called her a 'little girl'. I called her that earlier today and was promptly scolded)

So, in honor of Miss Emily Rainn Warren turning 10, here are a small sample of those pictures and my hopes for her.

Even though you're no longer going to be taking any dance classes this year, I still hope you take the time to dance. Dance by yourself, dance with your friends, dance with your daddy, but just dance. Like the saying goes, "Dance like no one's watching."

It's cheesy, but I hope you take the time to stop and smell the flowers. Don't rush through life, just wasting time waiting to be in high school, or in college, or out on your own, married, having babies, or whatever the next goal you want for yourself may be because pretty soon you'll look back and wonder where all the time went and you'll wish you would have done this or that or enjoyed more moments. Enjoy your moments, no matter how small.

 The world is a big, scary place but your parents will always be there next to you, supporting you, no matter what.

I'm sorry we ruined Twinkies for you last year by giving you one of those "Shrek" Twinkies with the green creme filling. They totally freaked you out and you hate Twinkies now. I hope you can love them again. (Sorry also to my best pal Tanya Jo! She loves Twinkies and is probably cursing me for doing such a horrible thing to an innocent snack cake.) 

I hope you always have a caring spirit that wants to take care of others, no matter how small.

I hope you always love the simple things in life like Nemo balloons and early morning Sesame Street. 

May you never lose the excitement of a really cute pair of shoes.

I hope you always enjoy nature and enjoy learning about science and all those things I thought were lame and boring. Learn everything you can about anything. You never know when you'll need to know it.

I hope you take the time to relax and enjoy yourself once in a while. Soon your life is going to get even more crazy with friends, activities and social engagements that you think you can't miss out on and before you know it you're all grown up and wishing you could go back to this moment. Take advantage of naps. ;)

...at the same time, take the time to spread your wings and explore. Be adventurous. Don't look back and wish you would have done more while you were more of a free spirit. Fly.

I hope we've made you happy as you've made us. 

I hope you'll always remember how to laugh and have a good time. You have THE BEST sense of humor and it's something that can easily get lost. Nothing ever needs to be taken so seriously that you can't smile about it.

Now, and this is the most important thing I could ever express to you. No matter WHAT happens, I'm always a phone call away. Call your mother. Always. 

Happy Birthday Emily Rainn Warren!! I love you!!

(September 15, 2001. Emily and I getting ready to go home from the hospital)