Sorry I haven't posted here in awhile. . .

After my surgery, I wanted to journal what I was feeling and going through. Because I type better than I write, I thought of starting a whole separate blog. I figured this maybe should be my "twins" blog and that one my Cushings blog. Hopefully I will get around to making a post and updating about the kids here soon... I promise. Until then, if you wish to see how I'm doing and follow my recovery from surgery, you can click here: http://cushiemama.blogspot.com as there are pictures there as well.

Back from Seattle, recovering from pituitary surgery!

I'm on day 4 of being home from Seattle and so far I'm doing ok. I was in denial from day one that I even had this stupid disease because I felt pretty good considering and didn't have any outward symptoms or symptoms that couldn't be chocked up to something else. Which is why it's so hard to diagnose in general. But that said, here's the story of my latest trip to Seattle...

I left for Seattle, on Sunday June 1st at 8am. Being to the airport that early is too much. But the flight was pretty good and it does go by fairly quickly, considering it's a 5+ hr trip. My mom also arrived into Seattle about an hr before I did. Hubby and MIL stayed home with the kiddos so they wouldn't miss anymore school! Again it was sooo hard leaving them. Worrying about the plane and making sure it got there safely and then how I'd do with the surgery itself was VERY worrisome. I don't want to leave my kiddos... But they were fine and I had things lined up for them during the day, even aside from them still finishing up their last few weeks of school. It wasn't til the night time hours that it hit them I wasn't there. Talk about guilt when I talked to them though!!

Sunday was fairly boring. The car service didn't know where the hospital I needed to go was and I ended up paying more for that fare than planned. We checked into the Inn in the hospital and got a nice corner room. It was a TAD bigger than the last one. No view of the Needle this time tho. We vegged out in the room and then got lunch. Then we went back to the room, played a little Rummikub, got dinner and back to the room. I was lucky enough to meet one of the gals from my Cushings message board at dinner. Her and her hubby were there going through all this too. We were to have surgery on the same day oddly enough!! She was still going through some testing too. In any case, mom and I were in bed an asleep though before 9pm. Remember, there's a 3 hr time difference from the east coast to the west!

Monday morning I got up bright and early. I had my appt with the endocrinologist - Dr. L and the neurosurgeon Dr. M at 9am. I also met with other staff to finalize paperwork and whatnot. I went through the whole procedure and what to expect a few times. I was there til about noon. Then mom and I went to lunch and then had to get my PICC line in around 1pm. Unfortunately, the nurse that did my PICC line had to do it twice as the first line seemed to get stuck and would not go up the artery. So she moved over a bit and was able to put it in the second time. Then we went back up to the room to rest. And of course play another round of Rummikub - which I managed to win again. :) We were supposed to go out to dinner with my surgery buddy and another gal who was coming up for testing from the cushie board, but it didn't pan out that way.

My surgery buddy had some weird results on one of her tests and had to go back in to do the IPSS again. My other cushie buddy was staying with a friend and couldn't meet us til late. Being off times, we just couldn't meet too late. So mom and I decided to do dinner on our own outside of the hospital. We asked the gals at the admitting desk and one of them wonderfully decided to go with us on the bus to Pikes Market Place and show us this nice restaurant. It was so sweet!! We got off the bus and walked down to this restaurant called 'Cutters.' It was a nice seafood restaurant and it had a NICE lavendar cosmo that we decided to try. BOY was it powerful! I only had 3 sips, but it knocked out the horrible headache I had at the time!! Mom was a little loopy too! And the lady that had taken the bus with us, had a shuttle set up to take us back to the hospital! Again, so sweet!! (Taking the bus at night just wasn't a good idea!) Once we got back to the hospital, we both konked out pretty quickly!!

Tuesday morning, I woke up bright and early again. Nerves were really hitting me. But I was at the day surgery center at 7:30am. Got registered and then brought back to change into the hospital gown. Had my full history done and IV started through my PICC line. I didn't fight the catheter this time, as they didn't want to put it in. So I just went with the flow... ;) Thankfully my mom kept my spirits high so I wouldn't be too nervous. They came for me at 9:40am. That's when I started shaking. Dang those nerves! They took me to a waiting area, where I spoke with the anesthesiologist. Then they took me to another room where they got a CT scan of my head. I guess it helps their GPS system once they are in my head. Then they started wheeling me down to the OR and the anesthesiologist said he'd give me something to calm my nerves and the next thing I knew I was out of it. I don't even remember making it into the OR.

I don't remember being brought back to the hospital room. The rest of that day is kind of vague. I remember them telling me to pee in a bedpan, but I couldn't. I remember trying to get up to pee, but also couldn't. I felt like I had to go, but just could not. They did a bladder u/s and sure enough saw I had a lot in there. So after all that, in came the catheter. That helped. I felt horrible though. Excruciating headache pain, my eyes hurt, my nose hurt... Thankfully they kept me on a high dose of meds. Percocet seemed to upset my tummy, so I stopped that as soon as I figured it out. My first postop number was 50 - which I knew was bad. It did drop to the 40's, then 30's, then 20's, then down to 5, up to 7 and then back up to 30 over the next 3 days. I dealt with the painful aches and pains of going through cortisol withdraw, with nothing to show for it. I was beyond upset. They were taking blood at 6am/pm and 12am/pm and it was nervewracking watching the clock and waiting for results.

On top of that I got something called Diabetes Insipidus (aka DI). It's where you have an unending thirst and it goes right through you. Thankfully due to the catheter I didn't have to worry much about the peeing part, but boy was I thirsty!!! Nice cold water! MMMmm...! But it had lessened and I got the cath out before Friday. But by Friday when my numbers jumped back up, they decided they didn't get all the tumor and I had to go back in for another surgery. :( I was bummed to say the least.

Friday, at 9:30am they came to get me and take me back to surgery. I was just bawling.
I had told my kiddos I'd be home by Sunday and now it wouldn't be til next week. And the fact that Dr. M was sure he'd gotten it all the first time and wasn't sure he'd get much out this time was unnerving and worrisome. But back in I went. The staff was very sympathetic. I got to see the OR this time in all it's high tech glory and one of the docs in the room actually sat with me holding my hand til the anesthesia knocked me out. Again I don't remember much afterwards...

I vaguely remember being back in the room with the worst headache. I was still drugged up from the anesthesia and whatever pain meds they were giving me. They checked my eyes to make sure they didn't mess with my optic nerves, but boy was that painful to my headache. I passed back out and every so often I heard someone ask if I had to go to the bathroom. I kept saying now and could've cared less if I peed myself. (Which is so unlike me..hehe) It must have been late afternoon or evening when I heard one of the nurses run in saying my levels were 1.3 and they needed another blood draw. Then I was out again. I remember them coming back once an hr to get another draw. Saying it was 1.1 a few times and then finally dropping to 0.9. I could finally be supplemented with hydrocortisone. I finally came out of my stupor sometime Saturday morning.

They tried to get me to pee in a bedpan, but like after the first surgery, I couldn't. So they dragged me up and put me on this portable potty they called "the comode." Thankfully I was able to go, but boy did I go and go and go!! Turns out I ended up getting DI again, but not as bad as the first time. I was able to get up and go to the bathroom this time thankfully. And it didn't dilute like it did the first time. I guess my numbers were close, but stayed within normal ranges - so it wasn't officially labeled DI. While I still felt sort of woozy and headachy, I did feel "better." I stayed through the weekend and got pain meds as needed. Dilauded was the best med - given through IV. Boy did that knock me out. I could use that now!

In any case, I was discharged on Monday, June 9th, 2008. They took out my PICC line then and I got all my prescription meds and mom and I were back to the Inn. The nurses there were so wonderful, they got me a wheelchair to have for the next 24 hrs to use getting from my room at the Inn to the cafeteria to eat. We took the Shuttle Express from the hospital to the aiport at 7pm Tuesday night. Our flight out was at 10pm. Yep a redeye flight. Boy did it suck. I may have gotten a half hr's worth of sleep. On top of stress dosing and worrying about every little symptom, I just could not relax.

We arrived home at 6am EST. We got our limo driver, our bags and off we were to get home! Unfortunately, we had a VERY tired limo driver who was weaving all over the road and thankfully my mom was able to just talk to him the whole ride home. I was so tired, I slept a little on the drive home. We got home a little before 8am.

The kids had made signs that they posted outside the front door. And they were up and waiting for me. I had flowers and cards waiting...it was all so emotional. The kids and I prolly hugged for a good 5 minutes. Max even said he wanted to stay home from school to take care of me. I told him he couldn't cuz I needed my rest. But I promised I would be here when they got home. It was so good to be home. There's no place like home. . .

We went to Disney World!!!!!

We did it! We went to Disney World, with both my parents, MIL and the kiddos! We stayed at the Polynesian Resort which was AWESOME! Our room was on the bottom floor and just outside the back door was the very big and very cool Volcano Pool!! And down from that was the beach where across the way you could see Cinderella's CASTLE!! We couldn't have asked for a better spot at the resort!!

The main lobby was just a few steps away where we could shop, eat or catch the monorail! The monorail took us to Magic Kingdom within like 5 minutes, which is where we spent our first evening there! (Sunday May 4th) Kids were in awe to say the least! So much to do and so little time though! We met Mickey & Minnie for the first time, kids got their face painted and we stayed to watch the SpectroMagic parade! We took the ferry back to the resort after the parade and we were able to watch the fireworks from the boat! It was VERY cool!

Monday, we started out the day with breakfast with Lilo & Stitch, Mickey & Pluto! It was an awesome breakfast! That was at the O'hana which is the restaurant right there at the Polynesian. Then after that, we went to Animal Kingdom. Unfortunately, Animal Kingdom is the one park that is the farthest away. There was quite the line at the bus station, so we ended up taking a cab there. It was awesome though and we had a blast! Kids got to see a bunch of animals and the Safari ride was probably the hit of the day. Nothing like seeing real life animals up close and in their own habitat!! We ended the day with dinner at the Rainforest Cafe there in Animal Kingdom. It was nice and COOL. The day was quite hotter than a lot of us expected!

Tuesday, we went to Disney's Hollywood Studios! My mom and my MIL stayed behind to veg by the pool, while me, hubby, the kids and my father went to Hollywood Studios. There we went to Disney's Animation Studio where they showed us how the animations were made. We all got to learn how to draw a picture of Jimeny Cricket. We also saw kids become Jedi's in the Star Wars area. We ourselves rode the Star Wars ride. I was worried about the kids, but they did great on it. It was like a movie ride, so it really didn't go anywhere - but the seats moved so it felt like you did watching the screen tho! Then we went to meet Buzz & Woody from Toy Story. That was the highlight of Max's day! We saw yet another parade and then that night we were off to Epcot. Went to World Showcase for dinner and to watch the fireworks show. It was pretty cool, but scared Emily and my mom - it was so loud.

Tired...will finish in the morning...

Max's first "major" accident!!

I thought it might NOT happen or if it did, he'd be much older - but Max fell off his scooter Wednesday (the 23rd) while riding on the sidewalk in front of our house - and chipped THREE of his nice new front teeth. :( Got a doozy of a cut on his upper lip too. He also scraped up his left elbow and right knee.

MIL was the one outside with him at the time and he was just riding back and forth. He had his helmet on and all, but MIL thinks he hit a stone or something and it turned his little wheel and jolted him forward. I was inside talking to Emily about school and getting her ready for gymnastics, so I didn't see it. Poor guy had blood all over his mouth. I heard him crying from inside tho and it was horrible.

Thankfully and ironically MIL kept us all from freaking out. We cleaned him up and saw it was a little cut on his lip (but dang those things bleed!). But it was the teeth that made my heart drop. Brand new adult teeth - THREE of them chipped pretty good.

We took him to the dentist the following morning to have them file his teeth, cuz they were somewhat sharp. They took some xrays to make sure the roots and nerves and stuff were ok. Which they were thankfully. They said he may have to have his front two teeth cosmetically done if and when he feels he needs it as he gets older. So for now they are just "crooked." But overall they are ok, thankfully. I feel sooo bad tho. My poor boy....it's always something!!!

Emily lost her first TWO teeth!!

Emily lost her first tooth (err teeth) today!!

We went to the dentist today to see if her needed to be pulled or not. Dentist said her two bottom baby teeth weren't going to come out on their own just yet, but they still could. He thought they should just be removed tho to make room for those adult teeth that were almost all the way in... This was the funny conversation of the day tho..

Dentist: "Emily, if we wait 3 more months they MIGHT still fall out. Do you want to wait and see?"
Emily: Nope. I want them out now. (And she opens her mouth nice and wide!)
Dentist: (laughing) ok then!

So he numbs her gums with a little gel, then gets the novacaine and numbs her more in slow stages so she doesn't feel it. (same as they did for Max and his cavity) Dentist calls it "sleepy juice" because the teeth just "fall asleep." Em was so funny trying to feel her teeth once she was all numb. But the dentist just pulled the 2 bottom baby teeth right out and she was fine! And soooo excited! He gave her a tooth necklace and she was in heaven! "FINALLY" she says!

So she was in a rush to go to bed and get her gift from the tooth fairy. Max was really happy for her too and helped her yell out the window to the tooth fairy to come visit her. It was too funny! While I hated this is the way she had to go, I'm glad it's done. One less thing to worry about and she is ok with it too...

6 year checkup!!

We went to see the pediatrician this week for their annual checkup. Fun fun!!

I can tell my two are getting a little more private in that they didn't want to undress as easily this time. They did, but were "shy." Max more than Emily anyway. In any case, both kiddos are 45 lbs (Max gained 2 1/2 lbs this year and Emily gained 5 1/2!!). Max was 46" and Emily was 45 3/4". Still amazes me that they are so neck in neck on weight & height. Especially for being b/g. I was worried about Max falling off the charts, because he is all skin & bones. He still doesn't eat well or very much and I worry about him all the time. Emily is doing well eating since she had her tonsils out last year and I think that helped with her weight gain! I'm hoping if and when we decide to have Max's tonsils taken out, he'll eat a little better. In any case, they were still both in the 50th percentile for height & weight, so I'm ok with that. :)

Doc said they are doing well despite being so sick the last few weeks. Between strep throat and a mild case of the flu - it's no wonder they look as good as they did! But my babies are tough. Me on the other hand, I'm not so sure. hehe!

Happy Birthday sweet babies!!

I can't believe they are SIX!!! Time is just flying by and I can't stop it. They are definitely growing up more and more every year and this one has been a big one. Kindergarten has probably helped in that aspect too.

Anyway, I'm writing on Easter night, even tho there bday was earlier this week. I'll write about Easter another time. hehe! The last two weeks have been down right crazy. I'm so tired I don't have much energy to post it all, so I'm copying and pasting what I wrote on one of my message boards...

The week before their bday BOTH kids got sick with strep... It started on Sunday (the 9th) with putting the kids to bed and Max said his throat hurt. Of course he's the 'boy who cried wolf' so we gave him some tylenol and told him he'd feel better in the morning. 2+ hrs later, he woke up screaming and crying. He said he couldn't swallow or breathe. Sure enough his glands were sooo swollen, they actually made him look like he had a 3rd chin. :( So freaking out and thinking the worst (DH had his glands in his neck swell up 5 yrs ago when he was diagnosed with Hodgkins, so I was really panicking) I rushed him to the ER. After a 2 hr wait in the ER, they told us he had severe strep throat. So they gave him meds and we came home. That lasted through Wed in which I kept him home from school. On Wed night we went out to eat and Emily told me she was sooo cold. It wasn't that cold out and I know that's her clue for us that she has a fever. As soon as we got home, I took her temp and sure enough it was 102. :( I had some left over Amoxycillin and went ahead and gave some to her to get through the night. I called the doc in the morning and sure enough, they called in another prescription of Amoxicllin for me. That lasted through Friday that she was home from school.

Luckily they made it through the weekend and their two parties (family one on Saturday and kid one on Sunday). Me however, not as lucky. I came down with a fever Saturday morning and just felt ILL all day. So family party didn't go over so well with me, but the kids had an ok time.

Thankfully I was a little better Sunday and the kids were ok and managed to get through the "kid" party at this place called the Wacky Gym. I had them wear these new shirts I'd just bought them (see pic above). You can see on their face they were worn out tho.

I was still struggling and at this point have lost my voice. I'm coughing, Emily's coughing, and now my mom and DH are feeling sick. *sigh* Monday morning (St. Patty's day) we wake up to get the kids ready for school and they aren't feeling too well, but manage into school anyway. Emily came home early due to coughing fits. Max thankfully and ironically has been fine minus some congestion.

Tuesday morning (their official bday) Emily wakes up with a 103 temp. :( So Max goes to school to celebrate at school w/o her. Luckily her teacher sent her a card and a Judy Moody book home with Max for Em. It was very sweet. She's still coughing and now both my mom and DH are getting worse. I have a feeling this is a mild form of the flu.

In any case, I feel bad their bday was somewhat of a bust all the way around. We'll celebrate a night out once they feel better. But still, I feel guilty. We haven't been sick on their bday in a number of years, but I guess it was bound to happen. Thankfully they got all new toys and stuff to keep them occupied. Nothing like a new Wii game and webkinz stuff to maintain their sanity. ;) But they are officially 6 now!