Cheeks' Updates

 
Wow. Has it really been this long? Amazing.

Time is passing very fast instead of very slowly. Life is good.

Sammy is something else. She's 4 now. She turned 4 at the end of April. She thinks she's 20, and acts 35 most days.

We haven't seen a doctor in 3 months. :)

Sammy likes to ride her tri-cycle. She is a movie buff. She loves playing at the park on the slides and she thinks bugs are really icky. She curls her nose when she talks and she can pitch a serious fit. She's amazing and she's so much more than I dared hope for for awhile.

Sammy's going to be just fine :)

We're still seeing her endocrinologist every 6 months. They still want to put her on growth hormone, and we're still saying no. We're waivering a bit, but still holding fast. She had a bone age done September 30, 2003. She was 3 years 5 months old and her bone age was 2 years 6 months. On March 22, she was 3 years 11 months and had a bone age of 2 years 9 months.

In six months she experienced 3 months of growth. No catch up. She fell behind again. We'll see. I'm still hopeful :)

She just finished her 2nd year at preschool and goes back for her final year this fall. She's going 4 days a week now, in the afternoons, and most days wild horses couldn't keep her away. She loves it and it's been so good for her! She's got some great teachers.

Let's see...as for the rest of us...

Nikole is doing fabulously! She's doing awesome with her school work and she's growing so fast. She's beautiful. Aaron is now officially bigger than I am. He's such a great kid. I'm so proud of them. He's 12 1/2 and she's 8 now. Yikes!

Me? I've won the battle of the bulge and I've been running an Atkins support group site. On Mother's Day, I actually ran a 5K! LOL How's that for weird?! And these are my non-smoking stats (how's this for cool?!):

I have been quit for 2 Years, 1 Month, 5 Days, 23 hours, 53 minutes and 16 seconds (767 days). I have saved $4,895.96 by not smoking 23,039 cigarettes. I have saved 2 Months, 2 Weeks, 4 Days, 23 hours and 55 minutes of my life.


Corky is wonderful. He's my heart and my rock.

I was thinking....and talking to a friend tonight about journals, and how we use them at different times and places in our lives. I thought about this one. I've missed it and I've been glad to be done with it at the same time. I think we're really done with this part of our lives. The sick kid part. She has struggles and she will likely have issues all her life, but she's going to grow up. She's going to have a family some day. She's going to hold a job and make a dent in the world. She's gonna be okay.

Her name isn't "Cheeks" anymore, it's Sammy. And her identity isn't that of a sick kid any more. It's that of a preschooler with tons of personality.

If/when I get a journal up for Sammy, I'll link it here in case there's anyone still out there that may be curious. My website will remain the same as well..and that I *will* be updating at some point. :)

First day of preschool with her spiffy new backpack. His name is Zonk.

Sammy coming home from school on the bus. She konks out every single time. LOL

And here are some from Nikole's birthday.

Love & Light
~Brook


posted by Brook W 11:39 PM

 
Just got back from the dr with Sammy....
--------------------------------------------------------------------------------
This time it wasn't a typical medical crisis. Well, not the kind we're used to dealing with anyway.

Let me back up and set the scene.

Last night I was sitting at the puter (gasp..shock, I know), and Sammy came to me, pointing at her nose, telling me, "Ouch. It hut (Samese for "hurt")." I laid her on the kitchen table, flash light and nose-sucker in hand but couldn't see anything. I tortured her with the nose-sucker anyway just to be sure and looked again. Nada.

So last night we go to bed and Sammy was complaining about her nose hurting and then her nose started running like mad and sneeze? Holy cow. I thought the poor kid was going to sneeze her whole face off. LOL Alllllllllllll night long. Up, down, up, down.

We just got back from the doctor's office. HUGE wads of kleenex jammed WAY up both nostrils. I about died. LOLOL Sammy just laid back and let her shove that scary looking thing up her nose and never moved or batted an eye (sometimes having a professional patient for a kid isn't all bad). She sat up, sneezed again and what the dr didn't pull out, she ended up wearing. LMAO ewwwwwwwwww

Needless to say, Miss Samantha has a spring in her step and a new fondness for inhaling and exhaling loudly through her nose.

This child is going to be the death of me yet.


I'll pop in with a full scale update in short order. I have to run Sammy to preschool now - YEP!! Preschool! I just wanted to let you all know we're still alive and kickin' and doing FABULOUSLY! :)

I'll check back in in a little bit.


posted by Brook W 1:28 PM

 
This is a test on the Sammy Broadcast System - LOL

If you aren't in the mood to read an epic- back away from this webpage slowly. LOL MAN, a lot has been going on!

Wow, a month and a half since I checked in. That's a new slack record for me - I'm sorry. No news is good news and this is true here;)

Backing up...

We went to go see Sammy's endocrinologist a couple of weeks ago. The little booger has grown 4cm (1.5inches or so) since the beginning of November. Woohoo Sam!!

The doctor told us that Sammy *did* fail the growth hormone test, but it looks like she's getting enough to get by. She's currently 34 inches tall - which puts her at the 3-5%. Not great, but we're on the charts! - Her height velocity is an issue- they have these weird formulas they use to approximate her adult height, and at the rate she's going, she's going to fall about 6 inches short of what would be average for the women in our family. That and they factor in her past growth/weight problems and the liklihood for reoccurance, etc etc ad nausem. LOL Always something. Anyway, Dr. S says that she's doing great, but that he's watching her closely! He earned big points with us at this last visit.

We left there and we didn't have to go get poked or anything! - He wants to see her in six months. At that time he wants quite a few labs and a bone age, but that's six months from now. We can live with that!! We left there feeling very satisfied.

Sammy and I have continued to see Jennifer (psych office). Sammy is really hit and miss with Jennifer. It seems to be an all or nothing thing. Time before last they played like mad, laughing and giggling while tossing balls around the office. The last time we were there Samantha was absolutely horrible. - The 'thing' hasn't stopped, and it's getting mean-mouthed. She swore at Jennifer for the entire hour the last time we went. I was mortified! She's very specific and she's mean as a snake lately - it's really, really frustrating. Sammy is such an enigma in so many ways. She is the sweetest, most snuggly baby girl in the world, but she has this other side that is aggressive and nasty and scary. I hope Jennifer can help me help her. I was talking to mom about it again tonight, and the way we described it it's like she gets intensely angry about one minute little thing and then she gets stuck - can NOT move past it and it progresses to extended periods of time..turning into her "thing". She just gets...stuck.

Sammy is definitely partially a product of her upbringing. LOL I have cut that kid a lot of slack because she has honestly and truly felt like crap her entire life. She's been poked/prodded/stabbed/cut/invaded in every possible way, and when she's been pissed about it, I've let it really slide because I'd be that angry too. It was an appropriate response at the time - but it's not anymore. Our realities are different and she is getting older, you know?! Ugh.

We're redoing the Bailey test (sp?) for development. Jennifer promised to take tylenol before the appt on Friday, and I did too. LOL

Sammy's teacher and her OT have been pushing putting Sammy in preschool....NOW. We've tossed this around quite a bit, and after really talking about it my husband and I decided it might really be a good thing. - She has MEGA seperation issues; I can't even leave her with her daddy without her melting down. She could stand some role models in her peer group, and she could probably benefit greatly from the structure the special ed classes provide. - So we decided to go ahead and go visit the classroom they want her to go to, and I'd really like to believe we went with open minds.

Can you tell I'm having a *really* hard time with this? LOL

The class has 4 teachers is in it, and around 12 kids. There is a speech clinician, a special ed teacher and two aides in the room. Awesome- but....there were only 2 other girls in the class. These kids are all about 2x bigger than Sam. They ALL speak clearly enough to understand. They're all potty trained. Quite a few of these kids are being "mainstreamed" next year into kindergarden. ACK! We walked in there and it struck me how truly 'baby' she would be in that class. She's really *that* far behind them in some of these areas, most especially emotionally. She is going to raise holy hell when I leave her there, and while they may have dealt with other kids, Sammy is a force to be reckoned with too. LOL - I worry about her safety. I worry about her hurting herself. I worry that someone else may not have the patience with her that I have with her - and that someone may do/say something to her that would cause me to want to choke them - irrational, I know, but grrrrr. lol I worry that instead of feeling like she's among peers it's going to further alienate her. Either way, for awhile, there's going to be hell to pay.

We meet with all of the classes teachers and Sammy's current teachers on April 1st. It will be a time for my husband and I to voice our concerns/expectations and see what they have to offer.

I think it's a bit harder because we homeschool too. I have zero intention of sending her to kindergarden at this point - and truthfully, I have mega issues with our public school system here. The people Sammy has been dealing with are fabulous - but they're coming to our home, we're not sending Sammy to school. I'm really having trouble with this. I'm hoping that the meeting will ease a lot of this. Right now, my mommy heart tells me to grab Sammy and RUN RUN RUN and protect her - but I just can't figure out from what. LOL

Sammy is talking so much better right now, for good and for bad. LOL But it's so cool to hear her. She doesn't mince words and she's so darn cute. She's really a peanut :)

We had a big scare here this last week and a half. Sammy started to crash and burn (which of course makes the behavior issues worse). She started throwing up/insane diarrhea/stopped eating and this household went on red alert. I didn't think too much about it (a bug?) until day 3. I took her in, she acted fine then - got a clean bill of health and we were told to bring her back if it wasn't better in 2 days. It wasn't... so we went back in. We had labs drawn - she dropped pretty low and then spiked back up, thank God. She's doing fine now!!

I think that about brings you all up to date so far as Sammy goes.

Aaron is doing awesome! We just finished his first unit test in his new cirriculum, and he NAILED it. 98%!! I'm so proud of him! He earned himself a new bike for this summer out of the deal ;)

Roo is coming along beautifully! She is such a smart cookie- and smug? hehe Gotta love her.

We've got the kids involved in all sorts of stuff now- and it's nice because we have the time for it - not enough dr appts to fill up our calendar these days! hehe!!

Let's see:

Monday	Tuesday	Wednesay	Thursday	Friday
1:30 -4:00 preschool -Sam 4:00 Music Lessons Aar & Roo 6:30 gym- nastics - Roo	10:45 OT-Tutor -Sam 5:15-6:45pm Play Rehearsal- Aar	1:30-4:00 preschool- Sam	5:15-6:45 Play Rehearsal-Aar 5:30-6:30 gym- nastics-Roo	1:00 Jennifer- Sam otherwise gloriously empty except for library time.

We still have to add swim lessons in there for the older kids as well.

I'm also still sticking in there with the weight loss stuff - down 58lbs so far! - And working out 5-6 days a week. The kids and I are going to the YMCA a *lot* and loving it!

It's been a good month and a half - and I can't wait for this summer!

I hope all is well with you and yours.
Peace & love.

~Brook




posted by Brook W 12:00 AM

 
Sammy got TEFRA!!

Pardon me...

WAAAAAAHOOOOOOOOOO!!!

Sorry about that. hehe

Miss Samantha has qualified as disabled under the state of Minnesota's guidelines and will be guaranteed medical coverage/care. I feel like a huge weight has been taken off my chest. Whewww!

She weighed in at 31lbs 4oz - the chubby little booger :) She's grown 1 cm since the end of November too. She's still pretty tiny, but we're still seeing growth from her and as long as that's the case, we're not touching her with growth hormone.

We went to see Jennifer again this week. She's been very busily trying to track down info on other kids with P-SIADH to compare behavioral issues. I really hope she's successful. It would be cool to talk to someone else who has had a similiar path! Sammy is starting to get more comfortable around Jennifer too. Normally Sammy lays on the floor and shuts off (sleeps) or she stays high maintenance. She was very sociable this last time. It'll be interesting to see how Sammy reacts with her as time goes on. - Jennifer reminds me a lot of Mary Owens (the first resident to come on Sam's case that I really liked), she strikes me as being not only smart, but ambitious. Cool. We'll see!

Sammy has lost interest in the whole potty training process, for now. I'm so ready for her to potty train. Now I just have to wait for it to be her idea. LOL This should be rich.

We've been going to toddler story time at the library, but we've added a toddler play group on Thursday mornings for her. This should be fun to watch. I'm really interested to see how she reacts around all these children. I'm thinking we're probably going to join the Y pretty soon too, and the exposure to other kids there should be good too. Let's hope. The OT/PT people are really pushing for me to put Sammy in pre-school this fall. My immediate reaction to that is an emphatic, "Hell no". They keep trying to encourage me to hold off until summer and make the decision then. LOL I didn't pull my older two out and choose to homeschool them because I had nothing better to do to fill my days!!

Someone is pulling at me, "Mommy 'nuggle youuuu" - complete with crinkled up nose.

She wins!

Hugs!

~Brook
posted by Brook W 11:24 PM

 
Damn. I promised pictures and never got any up. I'm sorry.

As usual, life has been such a whirlwind. Things with Sammy have been pretty good and overall she's doing okay, although I'll admit she's freaking me out a little. There's a big surprise, eh?

The little bugger has decided that her drink of choice is water. While most parents would do cartwheels and dance a jig at this development, my knees tremble. Water has been the enemy for a long time. She's still drinking her soy milk and wants it when her feet hit the floor, but she's constantly sneaking my water bottle. I've been standing back and observing what it is she's doing and letting her do it - the only way we're going to learn what Sammy can tolerate is to let Sammy do her thing. If/when I spot trouble, I'll nip it in the bud ASAP. The truth is that Samantha has typically done a better job regulating her sodium levels than all the medical intervention ever did. If she keeps up with drinking the water, I'll be popping in at Mpls Children's with her to get an NaK (sodium/potassium) draw done just to double check the numbers and put myself at ease.

Tomorrow is our 3rd appointment with the neuro-psychology resident/intern/whatever. She seems really nice, but y'all know how I feel about residents/interns. Our experiences with them have been many things, but rarely positive and helpful. - Yes, I know that everyone in the medical field starts out there and needs to gain experience but...::sigh:: does Sammy have to train in everyone in the Twin Cities on SIADH? lol

Jennifer is spending a lot of time talking to me right now; trying to figure out what we're all about, our family dynamics and who Samantha is. She keeps catching me flat-footed, which makes me nuts. LOL I find being confused and at a loss for a 'right' answer very frustrating. More than anything, I think I'm terrified at being analyzed. The last time we were put under a microscope it was under the guise of being too stupid to feed Samantha. (Anyone remember the resident my husband and I called "Zena"?) I just find the whole process unnerving. My hope is that as Jennifer and I get to know each other better, that feeling of unease will get better. We're supposed to have the same goals, and that's to help Sammy cope better. If they want me to stand on my head while singing The Star Spangled Banner and it will help Sammy ...show me where ya want me.

We haven't seen a doctor doctor (LOL) since the middle of December. How cool is that? We're due to go and see Dr. P again for another weigh in and general catch-up session. Sammy has gotten really CHUBBY. This is such a weird thing for us. She's size 18 month tall but she's 2T-3T around the middle. Ha! She's walking around with rolled up sleeves & pants half the time now. It's such a hoot!

Here's a sampling of Ms. Mouth too :

"What YOU doooooooooing?"
"Knock it off!"
"Mommy, 'nuggle me."
"Watch deeedeeedeee (dvd)."
"Ohhhhhh for Pete sake!!" <-- this is our new favorite saying. It's absolutely hysterical. Any time she's frustrated, exasperated in any way, or if you ask her to do something and it's interupting her little flow, this is the phrase you're bound to get hit with.
"C'mere....now."
"I hungry. Hotgog!"
"Reeeeeeeeeead me! Want book!"


She's such a hoot.

The homeschooling stuff is going well. We were hit with a stumbling block for my oldest, but we'll get through it. I will say that I'm extraordinarily disappointed in our public school system and I'm convinced my kid got ROBBED! I don't regret the decision to homeschool them at all!

My husband and I are in the process of making some pretty tough decision regarding work/location. With the lack of snow, things have gotten downright ugly. We'll be okay - of that I have no doubts, but the question becomes 'How many scratches will we get while we wade?' . Think positive thoughts for all the families out there right now that are in a pinch because of this winter weather ...or lack there of! ...Heck, think a positive thought for all the families in a pinch, period.

I've missed the comments and interaction from here. I really have.

Pictures....they're coming. Stick with us. We're still a work in progress :)

Have a great night.

~Brook & Sammy
posted by Brook W 10:32 PM