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!

Max lost his 8th tooth and Emily's are coming IN!!

Max's 8th and HOPEFULLY last-for-awhile tooth has fallen out on Friday night/Saturday morning. It was in the middle of the night no less!! Hubby and I were downstairs on the couch, where we were supposed to be watching a movie. But we both fell asleep and down comes Max to wake us up. He says "why are you two sleeping down here. You're supposed to sleep in your bed!" Scared the two of us and we were like, what are YOU doing down here at 1am!!?!!?

So he tells me his tooth fell out and he woke up to catch it. THANK GOODNESS! Geez, like I don't have enough to worry about with this kid! So we got him a drink of water and back to bed he went. I managed to keep my eyes open for 30 min, enough for him to fall back asleep and for the "tooth fairy" to come. That was the longest 30 minutes tho.

Poor Emily on the other hand, has her ADULT teeth in behind her baby teeth! I forgot to mention this when I noticed them starting to come in around the new year. It's been a couple months and yet the baby teeth still do NOT want to come out!! The front ones are SORT of loose, but not really. I think her whole front row teeth are so close together, the two front ones aren't going to come out on their own. The adult teeth are stuck on the two side teeth. I would so hate for her to have to have them pulled. And here the "toothfairy" told her she'd lose her tooth by her bday. *sigh* Still crossing my fingers tho. . .

Back from Seattle - WITH ANSWERS!!

This was an amazing and oddly enough, fun trip. Leaving the kids and hubby and flying out alone was scary and sad. I was sooo thankful to see my mom at the airport in Seattle when I arrived there at midnight! We were both so giddy. When we saw the cell of a room I had at the "Inn" at the hospital - talk about the WOW factor. Small doesn't even cover it!

It was small, but cozy and convenient for all I had to get done. On Monday, I had a picc line put in my arm and then had to get blood taken every 4 hrs for 32 hrs (through Wed morning at 8am). I also had to pee in a jug for 24 hrs (a 24 hr UFC). I also took two salivary tests at midnight (one on Monday and one on Tuesday). I also had a stim test done via blood on Tuesday morning at 8am. (I got a baseline blood test, then a drug injection, then more blood taken a half hr later.) Wednesday was the IPSS surgery, which went a WHOLE heck of a lot better than the first one did - even with only a MILD sedative!! Thursday I had to take dexamethasone every 6 hrs and Friday they did another blood test at 10am, then injected a CRH drug and took my blood every 15 minutes afterwards. That was a crazy test!

The picc line they put in went amazingly well. I was quite worried about it, but the nurse that did it was a pro and all I felt was the lidocaine that numbed my arm. It was uncomfortable, but I think that was mostly the tape around it. And it was sooo itchy! But otherwise it was quite a convenience having it in for all the blood I had taken! It was even used for my IPSS surgery on Wednesday for my IV! So no extra needle sticks there either! BONUS!

As it turns out, my midnight and 4am blood results were off the charts. The highest ACTH levels I got at home (during the day) was 80, but at Camp Cushie my highest during the day was 111. At night it was 348!! My cortisol levels were on the high end of normal during the day and totally elevated overnight - ranging from 17-28 (normal range being below 5!). I got the 28 cortisol level with the 348 ACTH level. So I don't know WHAT was going on, but wow. My two urine tests were quite different in result. One was 33 and the other 90. So one was 3 pts above normal range and the other was 3 TIMES normal range! Incredible! The salivary test results haven't come back yet, so I'm not sure how I did with those. The ones at home always came back normal.

As far as the IPSS surgery, I'm glad I had it done again. I was really worried about only having a mild sedative and being awake, but I'm telling you it was soooo much better than full anesthesia!! Let me back track... I got to the same day surgery suite at 9am to check in. Came back, got dressed and was hooked up to an IV. I became the "problem patient" when I asked for a catheter (foley) after they told me one wouldn't be used. I didn't get that tho! They are hooking me up to an IV and I'll be somewhat sedated and they are telling me I won't pee on myself?? Or that I can use a bed pan? I don't think so. So I requested a cath be put in. They were shocked. But when I was wheeled down to the OR, they were HAPPY it was there! No mess for them to clean up! ;)

In the OR was a little weird. I was shaking (cold and nervous). They put this big hotdog looking thing down the middle of me to give me a tad bit of modesty in front of all the docs/nurses. Then they gave me some strong dose of ativan or something and I totally relaxed. From what I was told I kept thanking the drug nurse Brianna. LOL Then they must've sedated me, cuz I don't remember much after that. I remember a point where my one ear hurt and I sort of "woke up" but I wasn't really awake. It was weird. I remember them telling me to relax and it'll go away and I'll get more drugs. I guess it did go away until they did the other side. But it was gone as quick as it came. Next thing I remember I'm back in my room. Supposedly telling the male nurse that was attending to me that I was Rachel Ray. LOL I am NOT a Rachel Ray fan, but I know hubby is and I wanted to be her for him. I dunno. In any case, I did come out of it fairly quickly. And without the dry mouth, nausea or anything! It was awesome. I did feel the incision site more than last time. But was told that was to be expected.

While Dr. L is good at not blaming anyone, since he can't say whether the first IPSS was done wrong or my tumor was just "off" but this time it was totally on, with the left side numbers being upwards of 7500!! He said it's still not totally localized tho, as my right side was still around 2300!!! But between that and my blood numbers, he was absolutely sure I had Cushings. After going through a year of testing, one week gave me the full diagnosis I needed. But here's the interesting part!!!

On Friday after the dex test (which was totally crazy itself) around 11am, Dr. L called the nurses and told them not to take out my picc line just yet until he had a chance to talk to me!! 45 minutes later Dr. L called me back and spoke to me "in private" that both him and Dr. M (the neurosurgeon) were impressed with all my numbers and wanted to know if I could stick around another week. He wanted me to do another urine test (since he hadn't gotten results from the ones I'd done early in the week yet) so he could do a quick turn around and possible get me into a clinical drug study. I found the link to it too: Cushings Disease Clinical Drug Trial. He said I fit the profile perfectly and would like to talk more about it. He wanted to find out if I could rearrange my flight and stick around. I told him I had to talk to my husband etc. So he said his assistant would call back by 3pm and we'd decide what to do.

Talk about lot of information though!! My mind was whirling!! Before the last test on Friday we had just checked out of the Cherry Hill Inn, and on our way to the Silver Cloud Hotel (bigger rooms!). I figured we could wait over there and I could make my calls. We left Swedish at almost 1pm. Well not 10 minutes after we arrived at the Silver Cloud, Dr. L's assistant called me to say she wanted me back at Swedish because now Dr. M wanted to talk with me asap!!

So we RUSHED back over to Swedish and had not only a conversation with Dr. M, but a talk with Dr. L too!! One was obviously for doing the surgery and a possible quick cure and the other was for the drug and it's permanent help. Thankfully my mom was there and I had my husband on speaker phone on my cell. It was over an hour of information!! What we ultimately decided was that we didn't feel comfortable doing the drug study. And that I want to try the surgery first. With surgery, there's a chance for a cure. With the drug, they don't cure it - they just shut down the tumor and all the symptoms. But the tumor doesn't go away. If you stop taking the drug, the symptoms come back. Also, I'd have to go to Seattle 1-2 times a MONTH for a YEAR (and that's 3 days at that too!)!!! The pharmaceutical company would pay for it, but they wouldn't pay for my hubby to take time off to care for the kids etc. So it's a no go.

So Dr. M ordered another MRI (which they didn't originally want to do since I just did one less than 6 months ago and they like to wait a year usually - but Dr. M thought maybe with my tumor being "hot" this week something might show up. Ironically enough my MRI came back showing a 2-3mm tumor on the left side - consistant with the IPSS surgery!). I didn't get out of the hospital til just before 7pm!!!

It was just crazy. We decided to wait for the rest of the test results (salivaries & UFC's) and then decide on a surgery date. The surgeon was eager to get right to it and remove the tumor already. hehe! Had I told him I could stay another week, he probably would've done it then and there!! But I told him I couldn't do it now and planned to do it at the end of summer. This way the kids would be back in school during my recovery time. He said that was fine. I'm still debating a surgery date. While waiting for surgery til the end of the summer is ideal, dealing with all these symptoms isn't.

The recovery from this surgery is long and hard. It's basically like weaning a crack addict. Difference is that my body is making it's own drugs, but once they cut that tumor that's making the drugs OUT - I'll be in horrible withdrawl. A HUGE withdrawl within 24 hrs after the surgery is good, because it shows they got the whole tumor and I could be cured. But in either case, they'll have to give me the steroids orally and then I'll have to slowly wean off of them myself over time. Adrenal insufficiency (AI) is one of the problems if I don't take enough of the steroids and I do too much during the day. My body starts to shut down and I could ultimately die in a short amount of time. I will actually have to get a medical bracelet and carry a high dose steriod injection with me at all times until I'm weaned off them. (Kind of like Max's epipen.) It's a very scary process.

So it's basically my own rehabilitation. I don't want to be out of it for the kids bday, or before going to Disney. I basically am fine now, but I won't be after the surgery for quite some time. (They say recovery can be anywhere from 6 months to 2 years!) So if we do decide to go ahead with it, it will be at the soonest after we get back from Disney in May. That's where we're at now.