Friday, August 31, 2007
Thursday, August 30, 2007
So our appointment was at 12:30, and we walked out of Medical Imagining, at 12:36! We were a little early, but still. We go to the Dreaded Clinic B, and wait. They have lots of fun things to do, and there was even a sweet little girl, with the CUTEST pink and purple DAFOS!!
ANYWAY...We finally get called back to the exam room, and a little while later, the "fellow" comes in. Let me back up, You all know how nervous, and anxious I've been about this appointment. And...it wasn't with OUR NS. He is on vacation, but if it wasn't today, it would have been 3 weeks, and they didn't want him to go that long. So, the Fellow comes in, and leads with..."So what brings you into clinic today?"
WHAT???!?!?!? If you don't know why I'm here, I'm leaving! So my confidence level is waning. Whatever...I know she is just checking to make sure I'm there for the same reason she thinks I am. But, hello!!! She tells me, his ventricles look smaller, then May. I ask her, "Is the fluid still on the outside?" She says, "Oh ya, but it's not any bigger." I was so tired, by now it was 1:45 and had Emma with me too. I said,"So is this good or bad? She says, "Well, it's fine." Then she says, "Has Dr.Kestle talked to you about a shunt in the epid-something(I can't remember) space? OH MY HELL!!! Don't say things like this to me!!!!!!!!!!!!!
So I start asking her questions, and she says, let me get the doctor, I think he may be in surgery.
OH MY HELL!!!!!!!!!!!!!!! Well, I'll just wait here...*rolling eyes*
So he comes in, and says generally, He's fine, but we need to watch him. He says to watch for overdraining now. OYE. Watch for him to want to lay down alot, and when he's up running around, he'll have a head ache. Oh, and of course, if he gets worse, bring him back in.
So we go back in a month. This appointment is with Dr Kestle. And the CT room better have refilled the bubbles!
Wednesday, August 29, 2007
Go here to find out more, and see the picture I submitted, plus the other categories. Although, you better vote for Parker, in his category!!
Then send her an email. And tell her you vote for 2d, and which ever girl and siblings you choose.
But HURRY, the deadline is Saturday, the 1st.
Tuesday, August 28, 2007
New Jersey, Mt. Laurel, United States, with Comcast Cable!!! Our mystery friend!!!...YOU checked in at 11:04 am Tuesday, Aug 27th...
YOU WERE THE 5000th PAGE LOAD!!!
WOO WOO WOO!!!!
Who ever you are...leave a comment! Maybe you'll get a prize!!!
Monday, August 27, 2007
I love the clouds in the reflection! If you want one of these, of your family, go here!!
"Freedom for most people of the world means “freedom from” the absence of malice or pain or suppression. But the freedom that God means when He deals with us, goes one step further. He means “freedom to”—the freedom to act in the dignity of our own choice." F. Enzio Busche, “Freedom ‘from’ or Freedom ‘to’,” Liahona, Jan 2001, 97–99
I have made this choice many times. When I was a youth, I was counseled time and time again, "Make the choice now". Whether it be moral, or smoking, or drinking. Sure, I made the choice, I wasn't going to do things that were harmful to me. I went to church, and don't ever remember, as a youth, NOT wanting to go. I suppose, it was never an option to go or not. My Dad, most of my growing up, didn't go. But I honestly don't remember thinking, well I can stay home if he is. My mom may tell you different, but that is fine, she usually does. *smirk*
When I graduated, I went off to school. I went to be with the mormons. So again, going to church was what we did. Sure it made me happy, sure it helped me make right choices. But everybody went, so...so did I.
I had a good friend who went on a mission, and get sent home for having sex. We talked many times about Free Agency, and how you just need to make the choice, and deal with the consequences good or bad. We talked about how it's just easier to do the right thing, once you've made the choice. When your friends say, "Let's go out drinking...you just say no!" You don't have to think about it, the decision was made years ago.
I remember when he was excommunicated. He couldn't understand why they took everything away from him. I said, well, you made a choice, and it was the wrong one. His wrong choices affected many people. His family, cuz he was sent home dishonorably. The girl he had sex with. His missionary companion. And me. We dated, but were not dating when he left, we were friends. I watched him go through this, and how painful it was. ONE stupid choice, lead to years of pain. He married the girl, and was MISERABLE. Seems to me he called me from a closet once, she was very controlling. But I digress. He has since been rebaptized, and remarried, to a wonderful girl. I haven't talked to him in YEARS, but think of him and his free agency often.
Back to me. So then I went and met a cute boy. He wasn't a member of the church, but he sure was cute. We dated off and on for about a year and a half. I wanted to get married he didn't. I wanted to get married in the temple. He didn't even want to go to church. So I left, and went to California.
He didn't like that I left, and decided if he wanted me, he better start using HIS agency to make right choices. A year later, he asked me to marry him. He had been making right choices all that time. Funny thing is, I wasn't making very good choices in California, but it all changed for both of us, we were married in the temple, and life was grand.
We kept making right choices, and some wrong ones, but never wavered in our faith. Now we are a family. Last year, was trying. On faith, on going to church. We were in a new ward, and it was different. The people are different. The ward we moved out of, we had been in for 12 years. We grew up in that ward, we had 3 kids in that ward. It was family. It was REALLY hard to start over.
When we were told Jack wouldn't live. We had faith he would. We grew stronger as a family. Then when he was born, and was "fine", and we had to keep him home alot, it started. Suddenly, church was an option. Not CHURCH, but going. We were given such a miracle in Jack. I felt guilty for turning my back on church. Not that I was turning my back on anything, but the kids, learned...church was an option. If Mom doesn't go, we don't have to either. I decided a while ago, maybe beginning of the summer, it was no longer an option. We were falling apart, and needed the spirit back in our home. So...I decided that. See... free agency.
So...I struggle with them at church. I would GO but then let them go home after primary. This new ward, has Sacrament Meeting last. Well, yesterday, I decided, I wasn't going to let anyone stop me from going, and STAYING at church. That was a mistake. Satan was in charge. Then it happened. "We are making some changes. We'd like you to be the new ward chorister."
My heart sank. My eyes fill up with tears retelling you. This is BY FAR my favorite thing to do at church. BY FAR!!! It entails, leading the singing, for 3 sometimes 4 songs during the service. I get to pick them, and stand up and see everyones smiling faces. Why does my heart sink you ask? Because of Free Agency, I am sometimes at church alone. I have a 12 yr old, who is now passing to sacrament, and isn't sitting with us for 2 of the songs. I have a 10 yr old, who teases the 4 yr old incessantly, and my sweet baby. Who, by the third hour, is done. I am scared to death, at the prospect of doing this alone. But will I really be alone? Maybe this is just the thing the boys need to take some responsibility.
Ya know, I told you before, my Dad didn't go to church most of the time. My Mom played the organ. One of our funniest childhood memories, is the glares from the organ, when we were being too rowdy. But we were older. And there was no baby. I told the man who offered me this "job", my Mom did it, so can I. But can I? I think the Lord thinks I can. Otherwise, He wouldn't have "mentioned it" to anyone. Hey, I can do lots of things. I can survive 6 surgeries, on my sweet baby. I can survive 6 trips to the ER in 2 months. I can survive my mother. ;) I can survive the black cloud that has taken residence over my house. I can certainly survive leading the music, while my kids are embarrassing themselves. If I have to hold the baby, so be it. RIGHT??? So I'm invoking MY Free Agency. I have been given the freedom to choose, and I am choosing to be happy, despite what people around me are choosing.
I'll let you know how it goes...
Sunday, August 26, 2007
I have a deep blog I've been planning all day. But I took my pill, and it's too late now, after all the redesigning.
But here's a hint.
I wanna talk about how free agency sucks, when it is not my own.
I wanna tell you how Church sucks...alone.
I wanna tell you some wonderful stories of faith, and standing up for whats right, and making right choices.
So that is for tomorrow. Get excited!!! :)
Saturday, August 25, 2007
So cute! He is so sweet! He's had his temperature take so much, in his short little life. Look how serious he is about it. By the way, we both are fine!!
Although...I've never seen a doctor take a temp. I have high hopes for him!!!
Not much else to report. Just letting everyone know!
Thanks Sarah for the suggestions. Oh, and everyone take a minute to read the petition at the top of the page. It is to make sure insurance can't say Cleft surgeries are cosmetic, when they get older. It's really important, so check it out, and sign it. If it wasn't, I wouldn't have put it on here. And pass it along if you want.
And...check out the guestbook at the bottom of the page. It's fun! Sign it with a picture too!!
One more thing...anyone know anything about bald spots? I seem to have acquired one in my crown. I can't see it, Steve noticed it. The first thing I thought of was stress, but everything I find, says that is a common misconception. I know, I know, go to the Doctor, but what kind? I don't want to wait a week for an appointment, and have my GYN, say, Oh, you need to go here... And like I've had time, to worry about me... *sigh* Maybe it's related to my tiredness, but with my luck, it's isolated, and there is nothing they can do. So, if anyone has any thoughts, I'd appreciate it!
Friday, August 24, 2007
His feet are so fat, that he has to wear a 5 and he looks ridiculous in them. They look like big clown feet. I guess he'll just keep going bare foot. His right foot, is way worse then the left. When I had him walk in the shoes, and it looks worse, and I can see them getting ruined. And even Payless Shoes, are $20! So stupid. BUT...I just got a box of clothes from a Freecycler, and there are 4 pairs of shoes in there, and all his size! What a blessing. We'll see how it goes. And lots of winter clothes. What a relief. I hate change in seasons, and having to buy clothes. ugh
Also, this afternoon, Jack's incision seems swollen. Well, like there is fluid built up around the new shunt, just under the skin. I don't know. I go into panic mode, and then calm down enough to call without crying. They said to watch him, and....bring him in if it gets worse. I seriously don't know what's worse, watch him, or bring him in. And the fact that now he seems fine, doesn't make me feel better. He was fine when his shunt was completely blocked... SO annoying.
The past few months, I've been thinking he has no sense of smell, which means he can't taste. He eats just about everything. I gave him a sour skittle today, and he didn't even notice. But then he had some "hot" gum, and cried and spit it out. I hear you can't tell until they are about 3. I also, put some vicks, and freechia smelling stuff, on a cotton ball, and he just held them in his hands. I kept waving it under his nose, and he didn't care. Seems to me, the olfactory bulbs were mentioned on the original MRI. Anyone else have experience with this? I know, don't worry about one more thing. I wonder if I'm trying to distract myself. Who knows...
Well...that's the update for today. I'll keep ya posted...
Thursday, August 23, 2007
I called and got the dreaded, "bring him back", and get a CT scan. Yesterday, the CT scan showed that his ventricles were smaller, but not back to pre-blockage size. Today, his ventricles are smaller-back to the right size, but he now has fluid, on the outside of his brain. Apparently his brain is not re-expanding as fast as the fluid is leaving, so it has gone to the outside, between his brain and his skull. They tell me this is common, and to watch him.
We all know this is my favorite thing to do! We have to go back and get another CT, next Thursday. And...if he gets worse, we have to bring him back.
Oh, and they tell me to keep him laying down as much as possible, so the fluid can go to where it needs to. YA RIGHT! I should have asked for a sedative. Although, he runs and runs around and crashes. It's 1:00, and he's asleep again for the 4th time.
It is so frustrating, because he's NOT typical! He's Jack. The fact that NOW he is having symptoms, worries me even more! While I'm glad to be validated, that YES he's not right, I don't like him not being right.
So, once again, keep us in your prayers. Not that I have to ask.... :)
Wednesday, August 22, 2007
Waiting for Steve to come get us, Jack wondered into the room next door. It was a cute girl, with an external shunt(due to infection). She is 20. Her first shunt lasted 11 years. Since that first malfunction, she has had 25 REVISIONS!!!!!! Oh my!!! Since June, she has been home 9 days!! She had a great attitude, and it was fun to ask her questions, we've been wanting to ask Jack!! She doesn't have any delays, she plays basketball, and soccer. It was very cool to talk to her!
Jack is doing great, but now we have to watch for infection. It's always an issue.
Thanks again, for all the well wishes!! Everyone, is amazed at how well he has done. He is amazing!
The Dr. just came in, and we are getting out of here! Jack is finishing his breakfast, sitting on his bed.
I put some more pictures in the little gallery. We played Hospital Bingo, ok I played while he slept! We won of course!! ;)
So I'm gonna go home and sleep...ya right! Check out the new pics! So cute!
Tuesday, August 21, 2007
He has done so well today, I can't even believe it! I'm still waiting for something bad to happen. Our room is small, but fine. It's certainly not where Em stayed, but it's nice, and clean. He was up running around all day! Took a little nap around 6:00, and was up and running when Gramma, and Emma came. We kept asking him, if he knew he'd had surgery.
He has never been fussy, or grumpy, or even acted like he's uncomfortable! He wasn't even a bit loopy. It is just weird. The Dr asked how he's been the last week, and was seriously shocked when we said totally fine!
Everyone...of course...is totally in love. He just stares everyone down. It is hysterical! He doesn't trust anyone! But he is very pleasant about it!
I did think about a few more things I hate about being here.
The pink admit bracelet.
Hearing the life flight helicopter, land on the roof.
The phones ringing, with their "non"ring. HATE IT!
The way his breath smells, from being intubated . HATE THAT TOO!
His name written in black on our name tags. Red for going home that day, Black for being admitted. Black...bad.
Did I mention the phones? It's like a Pavlovian response. I get all panicky. Hate it.
The fact that they tell you, you can't use the bathroom in the room. For pete's sake. He's a baby, like I'm gonna leave him to run down the hall.
On the bathroom note. I hate it when I go in there, and they come in the room and leave, thinking I'm not in the room. Murphy's law. Stupidness...
I hate the sound the IV fluids make. If you have heard it, you know what I mean!
I hate the D*** beeping, when he knocks off a lead, or his O2 thing. SHEESH!! Makes me nuts.
So...this is what I LOVE about coming here...and don't make fun of me!
The floor is clean.
They come and take out your garbage once a day, and I don't have to ask them 4 times.
They have fun toys.
My opinion matters. They ask me how I learn stuff. They ask me if I want to be involved in his care. They think I'm smart.
I am as important as Jack is. EVERYTIME someone comes in the room, with the exception of the garbage people, they ask if I need anything!
Every person that comes in the room, addresses Jack. They talk to him. They make sure it's OK with HIM if they come in, and do something. The man with the menu, talked to Jack, and showed him his name tag, and said he was from the kitchen. When Emma was in, the child life specialist, introduced herself and said I'm from the playroom, can I come in YOUR room!? Of course Emma said no, but that is irrelevant! ;)
We have the cutest male nurse tonight. We have chatted quite a bit about our mutual favorite TV shows, and he is SO cute with Jack, and me for that matter. He told the charge nurse I was his new girlfriend. So sweet...to flirt with a fat old lady in her Mommy jammies!!!
Sure I can't rewind the TV, and sure I have to look up, but it's here, and it keeps me entertained!
This whole experience has been so interesting. If he had not been sick, last May, and we had not asked for a CT scan, and requested an MRI6 months ago, I don't know what would have happened! We seriously fell over this. Tripped on it. Had it land in our laps. He had NO symptoms, yet the shunt was totally blocked, and not working. Someone commented, that they were thankful to be prepared, and not follow an ambulance. I'm certain, we would have! I am SO thankful, he is all fixed. And there was no trouble before hand. I had heard story after story, about kids in constant pain, and screaming for months, and not being themselves. I have been so blessed. I may have been mad yesterday, but today...I am counting my blessings.
The shunt was apparently clogged, so they just replaced it, and it immediately started to drain. And the tubes were placed too!
I can't tell you all, how much your support means to me. He is doing so good, and normal. Like he never had surgery!
Here's one from about two hours after surgery.
Here is some more! I need to run and get dinner, while Steve is still here. He is so "fine" I don't know how much I'll be able to be on here. He is ALL OVER the place. Maybe late tonight, after he goes to bed!
YAY!!! For happy boys!!!
Monday, August 20, 2007
I keep thinking he will be fine, but I have to be ready for anything...ya know!??
It's just SO frustrating to have NO CONTROL!! They say they have set 2 hours for him. But who knows.
And ya know, it IS a GREAT hospital. He is in GREAT hands, and I wouldn't do it anywhere else. I like knowing what to expect, and I hate it! And the best thing, is I can take you all with me...sort of...
I don't want to wait for them to call me and tell me what time I can come.
I don't want to spend 10 minutes on the phone, telling them....once again...all his issues. Can't they keep it on file?
I don't want to pack for an overnight stay.
I don't want to remember to get cash, so I can eat.
I don't want to eat at the "Rainbow Cafe".
I don't want to check in to same day surgery, and tell them everything...again.
I don't want to wait for them to come get us.
I don't want to send him off with the anesthesiologist.
I don't want to wait in the same day surgical family waiting room.
I don't want to watch the Doctors come in and out, and not talk to us.
I don't want to jump everytime the phone rings, hoping it is for ..."a parent for Jack Simmons"
I don't want to have that feeling, when they don't call for me. Because he isn't waking up from the anesthesia.
I don't want to leave Steve in the waiting room, and go back to see him. But I don't want Steve to go back first.
I don't want to get a crappy nurse. Not that we would, but I'm really not in the mood to!
I don't want to have to watch TV looking up. And not be able to rewind it.
I don't want to sleep on the crappy bed.
I don't want to miss Nick's second day of school, first day with all the grades.
I don't want to send Emma to my Mom's AGAIN...
I don't want to, I don't want to, I don't want to!!!!!!!!
But I will, and now that I've gotten it out...I feel better!!! A little...
Jobs I have held:
(I'm old, been working a long time)
Retail- clothing, and CVS :)
Housekeeping at a hospital
Waitressing-Bennigans, Applebees, Garcias
OT aid, in Severe classroom
Wife and mother
Movies I can watch over and over:
(with or without the kids??)
Sorry...High School Musical 1 and 2
Napoleon Dynamite (sorry again)
Shows I enjoy:
(this will go forever, thank goodness for DVR)
Stupid reality shows, where some one is eliminated-Big Brother, The Apprentice(pre Donald and Rosie feud, now he just makes me sick) Project Runway
And yes, I still watch Friends, reruns!!
Places I have been for vacation:
Not a big vacationer. But I've been places for reasons.
South Carolina, for a roommates wedding.
Boston to visit family
Mesa to visit a boy.
New Mexico, for same reason, different boy.
Body parts I have injured:
broke my elbow!!!
does just having 4 kids count for anything???
Anything I didn't make!
Top Websites I visit:
whatever ailment we have that week
Places I have lived:
(I had a friend tell me, before I was married, she always wrote my address in pencil)
Beverly, Wakefield, Lynnfield, Ma
Rexburg, Boise Id
Southern Cali, many places, can't remember...I was on drugs ;) um...not really
Logan, SLC, Murray, Ut
As far as tagging...
If you read this, consider yourself tagged. If you don't have a blog, consider this an invite to start...Lainey, Suzi, Heather, Yvonne!!! I'm gonna keep saying it, till someone starts one. And no...myspace doesn't count.
Sunday, August 19, 2007
I still can't believe it. It seems like last week, I was 2 weeks over due, and he had NO intentions of coming out! Sometimes I'm sad we didn't get more time, with just me and him-He and Parker are 2 years apart. It is what it is.
Friday was INSANE!!! Nick started school, and had a BLAST! He tells me he never got lost. But had to ask for directions...uh huh...He had lunch with his cute little girlie friend, and really liked all his teachers. *happy sigh*
Friday night, he went on an overnighter with scouts. So he was gone, with in 2 hours of getting home from school! Finally Saturday afternoon, he and Dad, went to get his birthday present. He got a custom skateboard, and pick everything out himself! HE IS SO EXCITED! I am a little nervous about letting him ride it to school, cuz we live at the top of the hill...to school. But we'll see... Plus, I think it's too big to fit in his locker. They are TINY!!
He's so funny. He told us today he wants to be a professional skate boarder. Heaven help me!
Last night, he and I passed out programs at the amphitheater. He has done it with me before. But this was the first time I didn't have to direct him in anyway. He's just getting old. It's weird.
Today, he received the priesthood. You can read more about that in these articles, I linked to before. becoming a deacon, passing the Sacrament And here's another great article about his new responsibilities at church. He was so excited. It was nice to see. One of our friends, said his son, was not even wanting to do it. So I'm glad Nick was happy, and looking forward to it!
Emma took this picture this morning. Of course...as my life goes, I didn't get one of everyone looking nice. He's not smiling, but you can see how old he looks!!
So Nick has the day off tomorrow, while the rest of the district starts school! Hopefully we can do something fun...ish...Of course, when you're 12, your mom's idea of fun, and your idea, are slightly different!
Happy12th Birthday! I love you! I'm so proud of you. You are a great kid, and make me laugh everyday! Always remember who you are, and how much we love you!
Saturday, August 18, 2007
1) Well, it's official. I'm old. Nick is IN Jr High. *sigh* I cant help but think about when I was in school. My mind often skips Jr. and goes right to High School. Probably cuz Jr High was SO horrible! It's kind of a blur...
2) I miss my friends terribly. From High School. We've totally lost each other! It stinks. I missed the last two reunions, as they are in Mass. If any of you read this, contact me would ya!! Sheesh... With email, and everything, it's really dumb we don't stay in touch! I guess I'm feeling nostalgic. And being so far away from everyone makes it worse!
3) High School Musical 2 was cute. I couldn't help but think they were doing a "moral" version of Dirty Dancing. It was a different plot, but was basically the same. I thoroughly enjoyed it! Emma is watching it again, right now! I appreciate something I'm not afraid to let her watch! Or the boys for that matter! What a relief. There is so much crap out there. Sure it's cheesy, but the kids have morals, and don't do stupid inappropriate things.
4) Parker gets old on Monday! He starts 4th grade. That is old to me. He is SO excited. And...his 3rd grade teacher, moved up to 4th, and he got her again! We are excited!! She is a great teacher, and is one of the kids, yet, they respect her! We have been friends since her oldest, and my oldest were in kindergarten. They have 7th period together, so at back to school night, I got to tell her about Jack's surgery. She is so caring, and really loves Parker, and gets our family dynamics! It's so nice...not to have to explain...
5) We got Emma's backpack. Pink, High School Musical. I'm nervous and excited for her to be in school. She is so smart, and so tall. I worry about her. Her primary(church) class is made up of kids turning 4 this calender year. I know she is the oldest, but she is a head, and some shoulders, taller than all of them. She's well spoken, and I don't have trouble understanding her. Maybe it's just the kids in her class. She is the only one with WAY older siblings. I'm sure that has a lot to do with it. I just worry she will be bored. Whatever...she'll be fine...
6) I'm sick of impending doom. Jack's been fine. He's had a couple of times when I question my decision. I don't know...we'll see. Tuesday is coming fast. Just not fast enough.
7) I feel like this surgery was a slap in the face. Sure we've been expecting it. But it's still not easy to hear it! Plus, I think we just got to where he was GREAT! Walking and being so funny. I think we forgot he had issues. We were rudely reminded! I have been so paralyzed this week. I hate it when that happens. It's hard to snap out of it...
8) I did cut loose long enough to take the kids to the "Aquarium" I put it in quotes, cuz it is very small, but still fun! The kids had a BLAST! Here are pictures from it.
Those are my random thoughts! Hope you made it to the end! Hope they are random enough...
Oh, I'm supposed to tag! Ummm...
Three more...LAINEY and my Sisters!! You guys need to start a blog...what better way to start?? hint hint...
Get busy girls...
Tuesday, August 14, 2007
Monday, August 13, 2007
The MRI went GREAT! We got to stay in the room, while he was getting it. The MRI itself, is LOUD! They plug the child's ears really good, and gave us some ear plugs too. It's actually quite musical. It took several different scans, and each was 1 minute, or 2 minutes, or a variation. And each scan, had a different rhythmic pattern. Maybe I was just tired, but I thought it was really cool, and very funky music-ish.
We then went to recover, where he just slept. They told us to expect him to sleep for about an hour and a half, but he was awake, in like 40 min. And woke up, like he'd been taking a nap. When he saw me he even smiled! HE kept looking at his thumb, that was glowing because of the pulse ox. For the first couple of hours, he was pretty wasted. He would try to walk, and fall down. He couldn't even sit, he'd just fall over! It was cute and sad!
Then we went to see the Neurosurgeon. Did the general head measuring -53 cen., and how's he doing. Asked how he was developmentally. I said, he was walking, not very good at the moment, but usually. And how we thought cognitively, he was great.
Then he pulled up the MRI on the computer. As well as the CT scan we had done back, Memorial Day weekend, when he was sick. His ventricles, are significantly larger. Since the END of MAY!!
So we went to get a shunt series(xray of his head and tummy) done, to make sure his shunt wasn't broken. Like kinked, or had come loose, or just plain broken. Luckily, it's not broken, but it's not working. It's malfunctioning. He asked if we noticed if he was acting weird. I couldn't think of anything. It's hard to tell what is the difference between teething(which he is)...toddlerhood(which he is)...sleepiness(which he gets, when it's time for bed)...ya know? I had been thinking he was teething, I even gave him some motrin the other night! He has like 3 teeth trying to come in!! I don't know. It's SO frustrating.
The NS(neurosurgeon) said he could schedule surgery tomorrow! ugh I asked if he felt comfortable waiting till next week, seeing as this is a big week for Nick, with "Jr High starting" events, starting on Wed.
So, we are scheduled for next Tuesday, the 21st. He will be admitted, at least over night.
Ugh ugh ugh...
It's the second day of school for Parker, third for Nick.
After we scheduled it, I realized, that we had a follow-up, to see if Jack should get ear tubes, on the 27th. I was just picturing going in there, and him saying, it looks like we should put tubes in.
So I had a horrible time trying to relay the message, to the ENT's staff, that he was having surgery, and would he consider looking at him before hand. I had to take Steve to work and come back, but the ENT, decided, without even looking in his ears, to put tubes in. 96 % of caucasian kids with clefts, need tubes. He said he'd rather take advantage of a surgery, and Jack be in the 4 %, then have to go back in, in the next couple of months again. And I completely agree. Ear tubes are a simple procedure, but a procedure nonetheless.
Oh, and since there is now fluid built up, we still don't have a clear picture of his stupid brain.
So Jack is having a Shunt Revision, and ear tubes placed on August 21st.
And I'm NOT saying...ANYMORE...he has NO procedures coming up.
Sunday, August 12, 2007
I'm a little worried about the sedation. But not overly. He did so great with the penny extraction.
But this one will be longer, so who knows. Anytime you sedate a child, it's scary. If you read this tonight, or early tomorrow, pray for no complications.
And then there is the matter of the results. Hopefully we will see the Neurosurgeon after. I WANT TO KNOW IF HIS BRAIN IS STILL MALFORMED!!! I mean really...have you met my boy...really.This is a big day. Well, we will send it off to the Carters Center again for them to evaluate, then that will be a big day.
Raise your hand if you think his brain still is funky. Raise um high! Cognitively, he is .... I don't know how to say it. He is so funny, and gets excited, and turns around when I say "come here", and runs squealing from his sibling, and looks to me to applaud, every time he puts something in a box, or gives you the ball, or a toy. He gives kisses, and gets scared, and nervous, and shy. All this and a brain malformation. hmmmm...
Although...how could it have just gone away? That would be impossible, would it not. Would you then call it a miracle? THis brain was so badly malformed, they told us to terminate. Could it really be fine with no fluid on it? REALLY?
Then there is the ever looming fear, the will find something new, and bad. I could name a bunch of things, but I'm to tired, and it would be bad luck.
We shall soon find out! Stay tuned...
And pardon...I took my ambien, and then decided to write...it may not make sense...I'll correct it in the am! :)
Can you tell I'm obsessing ... I'm wondering ... who is reading about us. I know most people, but obviously, some people don't want me to know they are reading. *eyebrows raised* So I was thinking with a poll, all you have to do is check a box, and not write anything. Even though some people's IP location gives them away. ;)
So...this will be fun! Feel free to comment though too... :)
I have a couple other polls in mind. So when this one is up, we'll do another one!
Saturday, August 11, 2007
The sorting hat says that I belong in Hufflepuff!
Said Hufflepuff, "I'll teach the lot, and treat them just the same."
Hufflepuff students are friendly, fair-minded, modest, and hard-working. A well-known member was Cedric Digory, who represented Hogwarts in the most recent Triwizard Tournament.
Take the most scientific Harry Potter
Quiz ever created.
Here is the link, and you can see more of HER pictures... And her blog is here. Check it out, and if your in Salt Lake, or close by, contact her to do your photos!! But hurry, she is large with child and getting larger...you may have to wait till she pops, in November!!
But these are some of my favorite..and there are more to come! I can't wait to show you what we did, it's kind of a project!! Be excited!!
He was TOTALLY done. Right after this picture, he started crying. It sad and cute!!
We were TRYING to get them to look at us, but this came out SO cute!!
So pretty, even with staples in her head!!
Friday, August 10, 2007
~I am VERY lucky to live in Murray School District. They have a fabulous Special Ed program, for Nick and Jack.
~I'm going to make up a "profile" of sorts, for Nick, to give to all his teachers. It will list his strengths, and the things he needs help with, and will have his picture on it. When I get it all typed up, let me know if you want to see it, and I'll send you a copy!
~IEP goals, are suggestions, and I am in charge! If I don't like something, I need to speak up!
~You too, can go to this workshop, and you should if you have an IEP. And live in Utah. :) Here is where to get info!
Here are somethings I learned, when I should have been in bed:
~Trampoline accidents ALWAYS happens when I'm trying to do something for one specific child.
~Emma CAN be convinced that I know best.
~Iceberg, closes at 11:00 pm. In the summer. So stupid.
~When you pull into the parking lot of PCMC's ER, and there is one space, you're not going to get in and out.
~Parents, in the ER in middle of the night, are tired, and stressed. And kids are sleepy.
~I should think about WHAT is on the floor that I just slipped on, and fell down, in front of the entire ER waiting room, before I clean it up.
~My butt WILL fall asleep with Emma asleep on my lap, for and hour and a half.
~Wake up Emma- more than we did, BEFORE starting the procedure.
~ALWAYS, ask questions, and be nice to the staff. They are nicer to you!!
~Babies in respiratory distress, stress me out. The baby behind the curtain from us couldn't breath. ugh... makes me sad, and feel yucky. I can't breathe either.
~Watching a little girl come in on an ambulance, is yucky. And when it's 2 am, it's worse.
~The freeway to my house, from the hospital, is COMPLETELY empty, at 3 am. The entire 11 mile stretch home, I was the only one on the road. And, it looks completely different.
~Emma looks like Frankenstein!...
It does tell me where"ish" people are logging on from. But when I log on, it says, Providence, Ut. I'm not sure why. Comcast must be there or something. When Steve logs on from work, it says Canada, cuz his company's main office is there, but his office is 2 miles away from home.
I can tell how many times you check my blog. I know who is obsessed, and upset when I don't post for a long time! Mostly cuz you check it 5 times a day! *grin*
Another cool thing, is it tells me where people came from. Here are some thingspeople googled, that landed them here.
~teenagers with cleft lip blogs
~daughter says it hurts when she pees
~WICKED WORLD donnie simmons
~pictures of children's yellow teeth
I thought those were interesting! I google stuff all the time. It's interesting to see what other people google. AND, it's cool and spooky, that people are landing here, for things that aren't even "on my agenda", ya know? "WICKED WORLD donnie simmons", I mean really, what WERE they looking for. I'm sure it wasn't the program from "Wicked", or my rendezvous with Donnie!! ;)
Or it tells me who's blog it's linked from. Or if you have it book marked or something! Also, how many are still going to the old site, and linking it from there!
So I know most of the people, well, where they are logging on from. But one of you that checks in daily, says you are from...
New Jersey, Mt. Laurel, United States, 44 returning visits
Who are ya!? Just curious. I'm sure you have a blog too, and it's fun to make new friends. Or...it's someone I know, and now I'll look dumb! *rolling eyes*
So there it is...you can't hide from me!! heehee I know whose checking in!! Sort of...it's fun detective work! Trying to figure it out! I've noticed too, some people always check the same time of day! It also, shows you the percent of how long people are on your site. I can tell, how long it took you to leave a comment. *grin* It's kind of creepy when you think about it. There's no anonymity anymore! Is that good or bad? Like caller ID. You can't tell people anymore, "I tried to call you!"
I bet you know when I'm reading YOUR stuff, even when I don't comment! If you don't have a counter, you should get one! Stats R Fun!
Thursday, August 9, 2007
I would like to announce to the world wide web: I have made dinner AND kept the kitchen clean for almost a week!!! I just couldn't contain myself!
I seriously deserve a medal!! I've been in that...fix something for Emma, make Jack a bottle, and the rest fend for yourselves. Or ...pizza, chinese, or Arby's. I know...it's sad. And...eat it walking around the house, or sitting on the couch, or on the floor, on a blanket sometimes. There were NEVER an clean dishes, cuz emptying the dishwasher is a boys' chore. So it was emptied over time as you needed something.
So this week, I decided to turn it all around, and Steve asked me to! :) We have had a meal, at the table, with REAL plates, and a clean kitchen at the end of the night, for a week.
It's been hard, but so worth it! Thanks for letting me share!!
So... Nick is all registered for school. UGH! We've already had a problem. As I told you before Nick got an IEP at the end of last year. Part of it includes a very cool class, every day, called applied skills. Well, it wasn't on his schedule. *sigh* Which means, the "assisted ed"(instead of special ed) teacher hasn't looked over Nicks schedule. We talked to, NOT, his guidance councilor, and she is fixing it. (she was available, and his was not-they go by alphabet) But it does make me nervous. If it's starting out this way...ya know? I';m going to a workshop tonight, about getting the most out of your IEP, so I'm hoping that will help!
I'll keep you posted on that.
Also, my neighbor, invited Parker to go "camping" with them. It is for 3 days, and about 2 hours away. They are going to Bear Lake, with a bunch of people from her mom's work. And she told me, a lot of those people drink(not lemonade and soda) and such. We decided not to let him go. I feel so bad. I know how much he wanted to go, I want to go! I just don't think he is old enough to go away for 3 days. He is also very impulsive and distracted. He wanders off, and doesn't even know he did. He also has been dealing with panic attacks. They have gotten better, but you never know when one is going to pop up. AND he has trouble sleeping. He has slept over at their house a few times, and come home at 2 am, cuz he couldn't sleep and had a panic attack! I know, he's almost 10. But he just isn't ready. I'm trying to "go with my boobs", and trust my mommy instinct. But he is SO mad, and hurt. I don't know. Any insight you might have would help. Even to validate me!!
Well, I'm off to PTA meeting, to official start the school year. Last year I brought someone to make sure I don't sign up for stuff. This year, I'm going it alone. Wish me luck!!!
Sunday, August 5, 2007
So let's see... with my Mom's help, The boys are getting there room cleaned up. They have bunk beds that have been stacked since Jack was born, but Parker feeling isolated I guess, on top. So last night we moved their beds around, and their furniture. They LOVE it! And Emma and Jack like it too, cuz they can play in there now. My mom said, "How does so much stuff get on their floor?" I said..."Seriously...they just drop it when they are done!" Anyway, I hope they will keep it nice. And ya, ya, I need to make them. *sticking tongue out*
Jack is just all over the place. Yesterday, he climbed onto my chair, up the back, and was playing with stuff on the mantel. OY VEY... Every time I turn around, he is into something else! We've missed alot of church this summer, for lots of reasons, illness, out of townness, laziness. So people haven't really seen Jack walking yet. In our womens meeting, some one was addressing the group, and commented on Jack walking. And what a miracle he is.
You know, I forget. When he's splashing in the toilet, eating poop like it's a brownie, or dumping out a bag of cereal on the floor, or throwing a hissy fit, cuz I walked by and didn't pick him up. I don't know how I could forget , but I do. I look at him now, and I don't think there is anything wrong with him. He has his MRI on the 13th. I'm SO curious what it will show. So curious. His ankle turn in still when he walks, and I haven't put his DAFO's on in weeks. I'm sure they don't even fit him now. But he is doing good, so I don't worry. BUT...I worry that he should wear them, and I'm causing him future problems. Whatever...
Emma is doing better everyday. We had her follow up last week, and a renal ultrasound. They found that her right kidney is still dilated. Which is normal, but needs to be rechecked. And...they are going to have to do a nuclear cystogram, which is to put it lightly....HORRID. The last time she had it done, she was MORTIFIED, to say the least. *sigh* I think I'm going to call and see if I can get her some valium or something. It's not till Sept 29th. But I am SO not looking forward to it. This one, I can't sugarcoat. UGH... When we went to the hospital for her follow up, she wanted to go to the fountain near the front door, and make a wish. Her wish..."I wish I didn't have to have surgery". It's funny, and sad.
So Nick. Nick turns 12 a week from Friday. I'm not sure how I feel about this. I'm trying not to think about how old it makes me. But this 12th birthday weekend, is HUGE. He starts Jr High on his birthday. He graduates from Primary, our children's church group. And starts going to Young Men's, our church youth group. He also will become a deacon, and pass the Sacrament. Here's another great article about all his changes at church. Of course I think he's not ready. But I'm pretty sure every mom does. They have also invited Nick to go to Youth Conference. THIS gave me a panic attack. It's a fun spiritual weekend, that when I was a teenager, you couldn't go till you were 14. This is on a smaller level, so the 12 and 13 yr old CAN go. ANYWAY....lots of changes coming up for Nick. And me...wish me luck!
So I decided to try a sippy cup with Jack again... Check it out...again...ignore me...you can here him SWALLOW!!! Sorry, I can't get it to embed. Stupid google.
So that is us, Oh...and check kid-isms, there is a new one!!!