A Week Ago

Since I'm online so scarcely, I forget funny things that happen during my week. One of those funny events happened a week ago.

Last week we had QUITE the snowstorm. And no, the school district did not cancel school. Even though we only live down the street from Cameron's school, because of his special ed class, he gets to ride the bus....for which I'm SO grateful!!

Anyway, where our apartment is located there is a cross-street that comes into our road and leads directly to the school....it's actually kind of annoying, but whatever. Usually the bus driver turns onto the road that comes into our street...which on a good day (when there's no snow on the road) it's a close call turning the corner. But with snow?? It's quite a feat. Especially when the tires can't get traction in the snow.

So back to last week. The bus driver probably figured that he could make the corner and began his turn. His tires pulled to the right....sliding the bus toward our apartment building. The driver tried again, and as I watched through my kitchen window I saw the bus slide and then suddenly stop. The bus slid into a parked car. (Thankfully NOT mine, but my *cough* "wonderful" neighbor's....)

The bus driver got out and looked, then I saw him get back in and call the district office.

I just KNEW Cam would be freaking out, I mean, he freaks out whenever we even REMOTELY get stuck....but he wasn't. He was laughing and goofing off with one of his friends. I looked out the door and window quite often and they would wave and *hide* from me.

In the end, the bus stayed stuck for about 40 minutes, and a truck came to pull it out of the snow.

Since then, Cam informs me that his bus driver goes the long way....and is more careful! :D

Trauma!!

It started out innocently enough. Cam has had 3 loose teeth for about a month, and lately, the ONE has been SOOOOOO loose that he can make his face look a LOT like Nanny McPhee's! (You know, scraggly tooth hanging over the bottom lip??) Last night I got tired of it, so I grabbed the boy, and began making some head-way on pulling that sucker out!

After squeaking and squawking for a while, it CAME!!

After taking many toothless smiling pictures, and convincing the boy that the Tooth Fairy only comes to CLEAN bedrooms (so she won't break her neck on toys lying about.) He began doing the "Nanny McPhee" face with the REMAINING tooth!! Enough of THAT!!

Mom held the boy down, and after more screaming and crying....OUT it came too!!

All in all, I'm a bad mommy....I yank teeth out! (But the Tooth Fairy is AWESOME, she gives 50 cents per tooth!! Except for the fact that the Tooth Fairy LOST one of the quarters....oops!)

Oh, and I'm thinking his Halloween costume is SUCH a good choice now....he's going to be a redneck! ;)

Wacky Wednesday

Scouts was cancelled today.

I had everything ALL squared away, and then the weather didn't cooperate. It rained quite steadily all day long. I had planned to meet at the park across the street from our church building, but with the wet weather, it was a bad idea.

I had HOPED to get inside if we couldn't play at the park, but NO one has a key!! (Well, I lied, there are the chosen few who have a key, but I'm not one of the few, and neither is my primary President.) I hope that my former partner hasn't moved YET, and that before she goes away permanently she passes on her little tools of the trade, including the KEY to the building. *sigh* Until she comes back from her house-hunting endeavor, I'll not know WHAT her plans are!

On a happy note, Cameron and I baked some cookies today. Not a whole TON, but quite a few for the three of us. I think Cam ended up eating 12 before I stopped him and sent the kid to bed, but he had fun.

Whenever I make a fun treat, I have to stow it away in my bedroom, or when Cameron wakes up (WAY before I'm ready...) he'll eat anything within reach! If it's in my room he can't get it! :)

I don't think Cam will be doing summer school this year, they've already started and I didn't hear ANYTHING from ANYONE! So I've decided to have the boy do a worksheet a day. So far, it's NOT going well. He gets SUPER frustrated whenever he has to work with letter sounds. He had a worksheet today where he had to look at the picture and fill in the missing letters, and he only got through 6 before breaking down with frustration. He took the paper and the pencil and THREW them at the wall while storming up the stairs yelling at me.

Am I a bad teacher, or is there anything else I can do to ease his frustration?? I reminded him of something they talked about on Blue's Clues last week. According to that show, whenever you get frustrated you: Stop, take a deep breath and think. After I reminded him he did that, but then got frustrated again the very next minute. It's hard to have a child that is SO frustrated and be unable to help or soothe their aches!

More Tests for Cam

A few months ago we took Cameron to see his geneticist at Primary Children's Medical Center. He had to get an MRI....the reason it took so long was because they had to sedate him. It was a very long day, and at the end, the doctor told us that there were 2 major concerns that the radiologists had with his MRI. He had a fatty deposit at the base of his spine. It could be nothing, or it could mean that he has a tethered cord. Causing all sorts of problems with his lower body muscle control, and eventually problems when he gets older.

The other thing they were concerned about was his lower lumbar area. They thought it might be aggravated lymph nodes, but they can't rule out a tumor. So his doctor recommended that we go back in 3-6 months. I was not really happy with this outcome, but what else could I do?

It's been 3 months. And when I was talking with my service coordinator yesterday I mentioned that the geneticist said that he wanted to see us in 3-6 months, and I'd probably call him that day about it. After she left I was just sitting there when I got a call from, who else? The geneticist. Coincidence?? Who knows!

He told me the results again, and told me that after discussing it with his supervisor and the radiologist they'd like to do another MRI. He had mentioned maybe doing a CT scan (no sedation), but after discussing it, they decided that an MRI would be best because they could also do a cine (pronounced: sinny) test where they could determine if he's got a tethered cord. BUT he also wants to sign us up for ANOTHER study where they'd look at the scoliosis a bit more. I don't know what all is included in THIS study, but I agreed to sign up for this one as well (the fact that THIS one pays made it an easy choice!)

It's just super annoying to not have specialists IN MY AREA! Not that SLC is that far away, but it's far enough. Enough that it's 6 hours plus of driving all in one day.

I'm thinking that THIS time, I want to stay over night IN TOWN!! (We stayed with my sister in Logan for the first trip...STILL took us forever to get to SLC the next morning!) I'm going to try and convince my mom to help pay for a hotel room! (My mom goes with us to EVERY appointment...Cam uses her as his security blankie...)

NF1 usually IS something that runs in families. BUT it's a dominant trait...meaning that if Cam had gotten it from me (my maternal grandmother DOES have NF1) my mom and I would BOTH have to have it, and we don't. His is a mutation. If you're familiar with genes at all...his is called a gene deletion. Basically, he has NF1 because in his DNA there is a whole gene missing that turns OFF the NF1.

When we go to do these tests we prepare him by telling him that some nice doctors are going to be helping him. His FIRST question is always, "Are they going to hurt me?" The last time we did the stuff for the study they told me that they had to draw some blood. I warned him about it...BIG mistake!! The kid freaked out when ANYONE came into the room...ANYONE!! Then when we went for his MRI and I knew they'd have to do an IV...I didn't warn him...it went MUCH smoother! The thing about the drugs they give for the MRI is that it works IMMEDIATELY. Not even a minute had gone by and he was asleep! He was way loopy afterward, but didn't have a bit of a problem...except for walking and standing up straight! He's a good kid at his appointments.

I'm going to try and set up the appointments for when Cam is out of school...I printed off his school's schedule, and we're looking at either March 1st and 2nd or the last week of March. Either way, I'll most likely be there in March. (Hopefully the roads won't be so bad!)

So here we go again! Luckily the doctor doesn't think he has the fast growing bad tumors, but he doesn't want to take any chances!

My First Real Life ER Experience

No, nothing serious, but just annoying enough to send us to the hospital instead of a regular doctor's office. I'll just say it was an icky night!

It all started when Cameron started throwing up yesterday. He hadn't been sick since one little puky episode on Tuesday night (just once). So I thought he was okay. He'd been going to school and seemed fine, except for a lingering cough. But yesterday the kid couldn't keep ANYTHING down! I was at my mom's house for the majority of the day, and after picking up my husband from work and heading home (with a grocery bag in Cam's hands just in case) we heard Cam whine that all he wanted was to sleep. Once we got home, his whining got worse. He never really "cried," but just kind of whimpered. He complained that his stomach hurt.

Now, when we had gone to see the geneticist in Salt Lake the last time, he told us to take Cam in to a doctor immediately if he complained of abdominal pain that keeps him awake.

He had also had a slight fever earlier, and when I went to treat THAT with some Tylenol, it instantly came back up. (I hope I'm not making anyone sick with this story...) Anyway, I had thought that maybe he was having something worse happen to him, (mostly I was worried it was appendicitis) so Steve and I took him to the emergency room, just in case.

We got to the emergency room, and the place was packed!! I'd never really been to the emergency room before (other than when my younger brother burned himself many, many years ago) and didn't really know what to expect. They got us checked in quickly, and moved us up on the list since we told them about Cam's NF1. When the geneticist told us to take Cam to the doctor with this kind of pain, he also told us that most doctors and nurses were familiar with the term...not in my town!! At every turn we had to explain what it was, and why we were REALLY there. While we were there Cam still was throwing up, and getting paler, and more listless as we sat.

Finally we went back to a room where we had to take off Cam's shirt and put him into one of those fancy hospital gowns. (Why do those gowns only have one arm hole!?) Anyway, we got him settled on the bed, covered with the warm blanket, and he kept moaning and grabbing his side in pain. I felt so helpless. He was hurting and I couldn't do anything for him! The nurse came and checked him out...asking more questions, and set off to find a doctor. After a while the PA came in and checked him out...poking his tummy, checking his throat, taking swabs and making tears come to Cam's eyes. He told us that he'd like to get some blood work done and start a saline IV on the boy (he was getting very dehydrated) and give him some anti-nausea medicine. We thought that sounded good and sat back to wait.

Since Steve had JUST gotten off work, he was starving, so once they started the IV and meds he left to get some dinner before the fast food places closed (it was about 11:30 at this time!) Cam cried just a little when they initially poked him, he cried a little for his daddy, but after that he was fine, maybe whining about the tape on his hand. The nurse was very nice to him, and told him that the IV was a "mosquito," and since the "mean mosquito" had bit him, she would get the "mosquito" back...poking it in the butt! She was very nice and very sweet! Eventually we convinced Cam to fall back to sleep, and once he did, we just sat and waited.

Finally about 1:00 (yes, this was in the AM!) they came with the results. The swab came back negative for strep (phew), and the blood work looked normal. He most likely had caught a bug that's going around. I was relieved! The stomach pain was probably from bowel problems or from coughing too hard. He was fine! We thanked the doctors and asked if we should worry about his pain coming back. They said that if it did, bring him back. Thankfully, he's been fine all day!

We had left home for the hospital around 9:30, with Cam worried that the "hop-sital" would break him. We came back home at 1:30 with a much happier Cameron...who was very ready for bed!

I hope to NEVER see him that miserable again. That's a hope that I'm sure won't come true, but here's to hoping!

Re-Explaining the Situation

Maybe I should explain my dilemma a little bit better!

Cameron is getting in-school occupational therapy, physical therapy, and is pulled out every day for 15-30 minutes to go to the special ed room where they work on his reading and other essential skills. Cameron IS in the regular classroom the majority of the time, but the problem comes in when he doesn't have his aide right next to him. The teacher pulls him out to his little reading group during the centers (they have a TON of stuff to do while in those little centers!) And when he's just with his teacher, she can't get him to grasp many reading concepts. He knows his letters (one of the few in his class who does) but he doesn't understand that when you put letters together in a certain way that it makes words.

The benefit of putting him in the DACC program is the speed at which they work. They do the exact same program, but at a much slower rate. In Cam's current class they only have an hour to do a center: social studies, math, word work, art, and listening and reading. There are four centers, and usually at each one there are TWO projects to complete. For example, this week I ended up doing the same center twice. We had to copy words in our best handwriting and then color and cut and glue an Indian boy into a canoe. Doesn't sound that hard, right? Well, when you're a frustrated little kid it takes FOREVER. Not only do they have limited time to complete these projects, but they're constantly being called out for reading groups and to work on the computers. There are times when I'm working with my little group of 6 kids that I only have ONE with me. I know it sounds chaotic, but it works...for the most part.

Now, my dilemma comes when I think about taking him out of his current situation. He's doing well! I know that he'd do SO good in the DACC program...he would continue to learn and grow, but I worry that he'd lose his social skills. The principal, when she first pitched this idea to me, assured me that the kids do have times when they interact with their peers, but it's only on a small amount of time. Right now Cam is making friends left and right, and LOVES it! He does fine when he has someone who can explain things to him in a one-on-one setting, but he can't have that ALL of the time! He's getting many special programs working and vying for his time, but he's in the regular classroom for the majority of the time, and that's how I prefer it.

Okay, do you think I've made my case? I don't know if it makes ANY sense, but I do feel like for now, we'll continue doing what we're doing.

On a positive note, Cam is actually thriving here at home. I can't even begin to explain the difference I'm seeing in my little boy since I stopped babysitting those kids last week. He's been SO well behaved, and has been talking like a normal 6-year-old! When I was watching L and E he'd talk to me like he was a baby. It drove me bonkers. Now, he's funny and I LOVE it! Even when I'm babysitting baby J, he's better behaved for me! I didn't realize what kind of strain my babysitting was having on him until this week. The change in him is dramatic! I'm so glad that I followed my gut (and the advice of all of you and my family) and stopped the craziness! Life is VERY good!

Parent Trauma

Doing double duty at school is exhausting! I mentioned to Cameron's teacher on Monday (when I was there helping) that if she needed I could help out on Wednesdays, now that I'm not babysitting on them anymore. She was thrilled beyond words. Up to that day (mind you, it's the end of the first trimester) no one had volunteered to help out with the centers on Wednesdays. So she quickly switched me from Mondays to Wednesdays and asked that I start this week, if possible.

Now, don't get me wrong, I LOVE working in my son's classroom...I feel way more connected to what's going on than anytime before. BUT, working with little kids who don't really want to do what they're supposed to is hard! There was one little boy who was SO distracted by the workers who are putting brick on the building I was sorely tempted to move him to the other side of the table where he couldn't see what was happening outside. Another little boy wouldn't do anything unless I was sitting RIGHT next to him. On top of these uncooperative kids we have the chatty little girls, who have to tell you a MILLION things before they do their work, those who would rather joke around and play, and then the fact that today was a short day. Every Wednesday is a short day in this school, makes both teachers and students hurry, hurry, hurry!

As all of the kids left to go to recess and then the library I sat and just vegged. Mrs. K came in and talked with me about how Cam has been doing in her class. He's a smart kid, but he is HIGHLY distracted. She was telling me that most of what they're learning in reading is going OVER his head. I figured that much, but then she said that maybe he would benefit from going to the DACC program. Everything in my body refused to allow this thought to process. I don't want him to fall behind socially, and that's the main reason I keep him in his regular class, but when his aide, Amber, isn't around he doesn't learn anything.

So here's my dilemma, should I keep him where he is (I feel he's doing just fine) and maybe tutor him more at home, or should I put him where I know he's learn more, but may suffer socially. Oh, the trauma of being a parent! I have a feeling that I need to get the kid tested for ADHD (just a recent thing that one of the many doctors he's seen recommended...) and I don't really know where to go for THAT, but oh, I'm just frustrated right now!

Missing In Action? NO, I've Just Been Living My REAL Life!

I didn't realize how much I could enjoy REAL life as compared to my online life. (Okay, so I STILL love my online life, but I needed this break!)

This last weekend was fun. I dropped my hubby off at the matinee performance of Oliver! and then I was off for an hour long drive to pick up his parents. Here's a BIT of background information about my in-laws:

When I first met my future mother-in-law I was put in a VERY awkward situation. She sat me in the middle of the living room with the television directly behind me...STILL on. I thought she'd ask me questions about who I was, what I loved about her son, maybe trying to get to know me a bit. Not what happened. She talked about her growing up and how horrible her life had been. I left that house feeling very unaccepted.

For many years I felt like she didn't like me. I don't know what I had done to offend her, but she just DID NOT like me. I felt awkward around her for a VERY long time.

Recently things have changed in a GOOD direction. I don't remember exactly when it happened, but she finally accepted me and I feel that she now loves me like her own. It's been a VERY rough road, but we're in a good place.

My father-in-law is a sweetie who loves to tell stories and sometimes misses the point of many conversations. He's really a nice guy and I have loved that man from the INSTANT that I met him (in the Temple on my wedding day!)

So I went to their house on Saturday to pick them up. We had a pleasant drive, telling what we had been doing and just having a good time. We got into town and decided to go shopping for food. (I hadn't had time to shop...I was too busy cleaning my house!) As soon as we were done, we hurried to my house where I turned on a movie for them, and cleaned up my kitchen. (I'm such a bad hostess!)

Anyway, we had a fun time talking and catching up, then it was time for us to hurry to the theater for the evening show. We got there early enough to get FRONT ROW PARKING! We were SO excited! I heard many cool family history-type stories and learned a lot about these people who had raised my sweet husband. Soon, maybe TOO soon, the doors opened and we were allowed inside. Our seats were in different areas of the theater, so we separated.

The show was nice. It didn't seem like it was as COOL as some of the other performances had been, but I think the little kids they had in the show detracted from the whole mood. My husband did an AMAZING job on his parts...he was the knife grinder (for those of you who know the show...) and he was the citizen who took matters into his own hands by killing Bill Sykes. The show was fun, and I enjoyed it.

That night as we went to the car to leave we found that the van was covered by 2 INCHES of snow! It wasn't snowing when we went inside! It was crazy! I tried to clean off the windows, but I couldn't find the window scraper. I had to reach under both of my in-laws, and had an awkward time of it, but finally I just used my coat to clear the windows. The storm was CRAZY. I could barely see the road! Luckily nothing serious happened!

We went to Stake Conference the next morning and I totally LOVED it! The talks were amazing, and the things they said seemed more personal to me than when they speak to us at general conference, although I know that they REALLY do speak to us! Anyway, I loved it and feel like I have been lifted to a higher spiritual plain. So GOOD!

We ate dinner afterward, and we drove his parents home. We quickly said good-bye and then we left...trying to make it home before it got dark. Minutes after getting home we got a call from his mom. We had missed seeing one of his uncles who lives in Boise by mere minutes! She told us what was going on with them (long story about their house, and the cruddy city they live in...) and that this uncle was going to help them out! We're STILL waiting to hear what exactly is going to happen, but we're hopeful they'll get what they deserve! :)

Then for the last few days I've been relaxing, and enjoying my family. I've been amazed at the transformation my son has been going through. It happens SO fast it's scary!

Today I took Cam with me to the store to buy some food, and when we got to the check-out he begged to get some candy. I'll admit it, Cam is spoiled ROTTEN! Being an only lonely on BOTH sides of the family tends to do that to a kid. And whenever he shops with Grandma she'll buy him ANYTHING he asks for. So he thinks it's normal to get candy EVERYTIME we go to the store. Anyway, he was eyeing the candy and asked me for one. I looked at him, and he had behaved VERY well (actually, his behavior has been MUCH better since I stopped babysitting L and E!) so I told him if he could choose quickly he could have ONE piece of candy. There were 2 people in front of me at the line, so I thought he'd be fast. Not the case! I got all of my purchases rung up and paid for before he chose. As soon as I had the bags in the cart ready to go, he pops out with a candy bar. I told him it was too late, he was too slow, and now it was time for us to go. The kid threw a HUGE temper tantrum in the middle of the store. People were STARING! I was horrified! I tried not to show my horror, and I grabbed him by the hand and pretty much dragged him out of the store. He screamed the whole way out that he wanted candy...I heard people behind me making fun of the tantrum. I put him in the van and we left. I was so upset with him, and I told him that what he had done was unacceptable.

When we got home it was like someone else had taken over my son's body. He was polite, witty, and even funny! I had a GOOD time with my kid! He was such a good kid tonight I had to tell him so, and I rewarded him with those good behavior stickers. It was like I had a two year old in the store, and my six year old was at home with me. It was nice!

All in all, everything is good. So far no AF, but I'm still worried to check myself out! I'm not worried so much about the pain I had last week. I think it was just a fluke. I KNOW it wasn't a gall bladder attack (I've had many attacks over the years, I KNOW what those are like...) and I don't think I'm pregnant (unfortunately...) so I think it was just something odd, but life is good now!

MRI Trip

Our trip was LONG and not really very informative.
I'll try to summarize my day, again, it was LONG!
Sunday night we informed Cameron that he couldn't eat ANYTHING when he woke up the next morning, so we spent the entire evening feeding the boy anything his heart desired. Then we put him to bed...hoping for the best.
Early the Monday morning I woke up...feeling like I should get up, even though the alarm wasn't set to go off for another 10 minutes. As soon as I stepped off of my bed, I heard Cam running, full speed, up the stairs. I saw his face was covered with chocolate. NO! HE DIDN'T! But he had! He'd eaten some of his left-over Halloween chocolate, and after some coaxing, he admitted to eating some. I was so furious with the child! I put him in the tub for his bath and went into my room to cool off.
I was SO mad! Every once in a while I'd hear him call out for me. Then after about 10 minutes he called out, "Mama? Am I having time-out in the tub?"
I had to admit, that broke me down...I couldn't stop laughing! So I allowed him to get out!
We left town about 8:00, and drove and drove and drove. We arrived at the hospital with 20 minutes to spare. We checked in with the medical imaging place, and watched as Cam bounced from toy to toy in the waiting room. (Have I mentioned my LOVE of this hospital?)
We were finally called back, did all of the usual mumbo-jumbo, and told the nurses that if they wanted a semi-happy patient, they should do the IV at the last possible moment. (And they listened! I SOOOOO love this hospital!) They had him restrained while they attempted to put the IV into his hand. The first attempt wasn't working, so they had to do it a second time! The second time was successful! And they instantly administered the sleeping medicine to him. It didn't even take a full minute for him to fall asleep. As they took him away I commented to my mom that I wouldn't mind giving him that stuff EVERY night when it was bedtime. (OF COURSE, I was joking...really...I mean it!)
Then the nurse told us that we'd have to wait in the waiting room. We told her that we wanted to eat lunch, and she said that was fine. The procedure was going to take 30 minutes, and they'd let him sleep an additional 2 hours after that, so we had plenty of time.
We ate in Primary's cafeteria (the better of the two hospital cafeterias that we'd eaten in!) and went into the waiting room for the next 3 hours! After a while I worried about what was taking them so long to call us back, so I asked the receptionist. She called back to the recovery room and apparently they had called us back over the loud speaker...but we hadn't heard ANYTHING! So we gathered our stuff (I had been reading a book, and my mom was crocheting a baby dress, plus we had Cam's shoes, glasses, and stuff...) and hurried to see how he was doing.
The nurses told us that he didn't have anything wrong happen with regards to the anesthesia, but now that we were there, we could wake him up.
We took blankets off of him, shook him, called his name and after nothing happened we then looked to the nurses. They had gotten a hold of Dr. S in the meantime, and he wanted to talk with me on the phone. He told me that he hadn't gotten a tech to look at the results, but he'd get right on it. As I was walking back to his bed my mom and the nurse were pressing a cool, wet washcloth to his face. It made him SO mad it finally woke him up.
The medicine they gave him was so strong that the poor kid couldn't control his body at all! They told us it could stay in his system for 24 hours! He was just like a rag doll! I asked him if he needed to go to the bathroom and he did, but I had to carry him there. I sat him down on the toilet, and he was so out of it with the drugs he was laughing at ODD things! When we came out, the doctor was on the phone for me AGAIN. I was still holding Cam, so the nurses pushed out a chair for me to sit on and I tried to hold Cam and talk at the same time.
It was one of the hardest things...trying to carry on a civilized conversation and holding a floppy 50-pound baby! The jist of the conversation was that there are a FEW things that they want to take a closer look at: fatty area around the tip of his spine, and a few lymph nodes of interest...but the GOOD thing was NO BAD TUMORS!! *doing a dance of joy!* They weren't "official" results, but they're fairly certain that he's fine! They recommended another scan, either MRI or CT, within the next 3 to 6 months. The thing about what they saw was that there really isn't anyway to know whether the things of interest are causing problems, growing, or just fine...because this was the FIRST MRI he's had. But Dr. S told me that there really isn't anything to worry about. I was SO relieved!
Then after we FINALLY got Cam more awake we were able to check-out and leave for home. By this time it was after 5:00, and Cam hadn't eaten much all day! So we caught a "McGonalds" on the way out of town, and a Wendy's for me and my mom, and drove home.
I was so exhausted and ready to be home! My mom carried Cam inside my house for me, and he tried to get up to get something, and he fell over backwards...he was STILL dizzy and walking like a drunk. I decided that I would keep him home today, just to make sure he didn't have any problems and I knew all was well.
He probably SHOULD have gone to school today, but he stayed home and pushed his mama's buttons ALL day long!
The other nice news is that I'll most likely be DONE babysitting those kids that drive me crazy by Thursday! I'm so excited! But now, all I want to do is SLEEP! So forgive me for not visiting you lately, but I WILL catch up soon! (I hope!)

Back to Salt Lake

Distressing call today during my recovery nap! It was Dr. S, Cam’s geneticist from yesterday. He had reviewed the back x-ray (they just x-rayed his spine...to see if there is a chance he could have scoliosis) and Cam has a slight curvature of his lower spine.
Things got upsetting really quickly.
He told me that we need to get Cam BACK to Primary’s for an MRI. The concern is that, while most of the tumors that kids with NF1 get are benign and completely harmless, there’s a chance of getting another type of tumor. This kind is the bad kind...the kind I didn’t really think too much about when we were having our conversations yesterday in the clinic, I think I was in denial. With the kind of NF1 that Cam has, he has a slightly higher chance of getting this one (don’t ask me the EXACT name...I couldn’t tell you.) It is highly cancerous and grows at an accelerated rate. Now, what does this have to do with a slightly curvy spine? These kinds of bad tumors grow next to the spine and tend to push it out of alignment. I had mentioned to the doctor that Cameron tends to whine to us that his tummy hurts, and we can’t always tell whether it REALLY hurts, or he’s trying to get sympathy for something, but he said that we should take his complaints seriously, and just as a precaution, check to see if he’s starting to grow a tumor which is causing this bent spine.
As he’s telling me all of this information I was speechless! In my mind I was thinking the worst. "My son has this tumor, he’s going to die from this, and I gave it to him!" I know, I know...irrational thoughts! But these are the things going through my mind. I asked Dr. S how urgent it is that we get this test done. He said he’d like to see it done as soon as we could...within the next 2 or 3 weeks. He told me that he’d get the information to the MRI center, and he’d call me back with the information.
As he hung up, I looked at Steve and we had a whole conversation without words. He could tell something was wrong, but didn’t know the exact details. I filled him in, and then I HAD to call my mom. (She’s the one who goes with us to these appointments, and the one I turn to after Steve when I’m distressed and upset!) I told her the basics of the conversation, and she told me that if we had to go, she’d be there with me. I told her I was waiting for the doctor to call me back, and said good bye.
The tears were just rolling down my cheeks...my voice was cracking and my sweet son came over to me, and told me, "Mama, I’m gonna wipe away your tears." And then he gently did so! That didn’t help the flow of tears, but it did soften my heart a bit!
Doctor S called us back with the phone numbers and said that if we couldn’t get in with them in the next month, call him back immediately. I called the MRI people and got it scheduled for November. Then they told me that I’d have to register him and gave me THAT number. After all was said and done I was emotionally wiped out. I had a blank stare for a long time tonight. I kept internalizing, worrying, and mourning. YES, I did say "mourning!" I worry that I will lose this sweet boy who has been my entire life for the past 6 years. I fear finding out that he has this tumor, and what it will mean for my family. The one fear that is foremost on my mind is that he will slowly fade away, getting sicker and sicker, and I won’t have ANY way of helping him. I know I shouldn’t be thinking this way, but I do. I should just let the doctors do the tests BEFORE jumping to conclusions. I just have a hard time doing so. After all, he could be TOTALLY healthy, there could just be a curve in his spine. It could just be another one of those things that makes him him.
The interesting thing about this whole thing is that we wouldn’t even have a clue that he could have this problem if I hadn’t agreed to let them do this research using Cam. They don’t normally go around doing x-rays, bone density scans, blood tests and everything on everyone who comes in for a check-up. I just hope that if he DOES have anything, they will be able to treat it quickly and safely. I’m just so worked up over the whole thing...I don’t quite know what to do!

Solutions

Things are going better now. We chose solution number 2/3! We're going to graduate from the program (although cutting back on babysitting was highly tempting...) take some of the money and put it into savings (most likely in a bank we don't frequent so the money STAYS put!) and then use some of the money to pay off bills and get repairs that we have been putting off. It's not the ideal situation, but we feel it's what's best for our situation right now.

And we're now fighting the decision the school district came up with for Cameron's "new" development. I didn't go into too much detail over the whole thing, so let me explain what's been happening to our family.

Cameron was psychologically tested and the results from the test showed that Cameron is "mentally retarded" or as they started to put it in the meetings I've been to "cognitively impaired." According to the scores on the test, he scored very low...at 55. Average mental capacity is between 85 and 115. At first I was a bit disturbed by the whole thing, but came to accept it as the truth I was unwilling to see.

At his IEP meeting options were discussed, and the principal decided that it would be in his best interests to maybe go into the developmental kindergarten. I was highly upset by this comment, and tried to ignore it. After school that day Cameron's teacher confided in me that she thinks those test results are wrong. I asked her why and she told me that she's had students in her class who have scored 65 on that same test who were FAR below Cameron's development and ability in her class. She told me NOT to worry about DACC, because he was succeeding where he is! In fact he's in the middle of the class when it comes to his learning abilities. She said, "He fits in perfectly with this class!" I told her that I think he may have been tired and uncooperative the day they tested him, and maybe I'd think about getting him retested.

The next time I saw the school psychologist I asked him if it was possible to retest Cameron, because I wanted piece of mind. I told him that I think Cameron may not have been in the best frame of mind, and just to satisfy me, would he mind retesting him on a day where he was more like himself. He told me that he wasn't sure he could do it, but he'd look into it.

I let things go at that for a while, complaining to people who know my situation with Cameron and asking what they'd do in my situation. I had even talked with his service coordinator who suggested that even if they couldn't get to retesting him THIS year, make them do it next year.

Then I went to help in Cam's class on Monday. His in-school occupational therapist pulled me out of the class to chat. She told me of how deeply disturbed she was over the whole situation and wanted to know what I thought. I told her what the teacher had said and she agreed with that assessment whole-heartedly. She told me that the results were NOT right, and we should fight them as much as we could. Then she told me that we didn't have that discussion, because the school doesn't listen to ANYTHING she has to say. That's not right. She's a professional who works with my son and knows his abilities. WHY not!?

Upon hearing these disagreements with the test results, my mind has been put at ease. I DO know my son better than the people at the school do, and I need to fight for his rights, because NO one else will! I plan on talking with the school psychologist again. Maybe this time I can get some definite answers!

I've been getting through this time with the help of some dear friends! I've been able to vent my feelings (in a purging fashion) and just doing that little bit has been an enormous help! I think things have just been piled upon me for too long and my poor body can't handle the pressure I've been going through. So to those of you who have been helping me out...THANK YOU! I didn't realize how much I needed a good friend, and you have been there to help me! I'm so glad I have people who worry about me, and want me to succeed! :)

Technical Terms

Today I went to Cam's school to help out in the classroom and the school psychologist pulled me aside and asked to talk with me. I wasn't too worried, since I knew he was going to be retesting Cam to see if he needed to continue in the special ed program. I told Cameron's teacher where I was going, just in case she needed me, and hurried down the hall. Mr. J told me how fun my son is and what a good kid he is. Then he told me that he had tested him on Friday and Cam had tested WELL below average. Then he told me the technical term for that was "mentally retarded." When I heard that phrase, my stomach turned and I was instantly upset. Why do those words, while applied to my son, affect me in that way? I know it's a technical term, but it just gave me the mental image of a severely handicapped child. I've grown up with a handicapped uncle, so I know how wonderful those kinds of people can be. I know that they are special, but I have a hard time with that term being applied to my child. Why can't they come up with a better word or phrase for that? I'm trying to convince myself that "retarded" is like the musical term "retard," which means slow. I figure if I convince myself that this is what they really mean, then the term "mentally retarded" won't affect me in the same way. I had a similar problem when I went to see a doctor for myself earlier this year. He was talking into a voice recorder so he could have a record of who I am, and what my problems are. He kept using the term "morbidly obese" when he referred to me. And I really wasn't bothered by that term, probably because I KNOW who I am, and what I am. He apologized to me telling me that it was a technical term. I think him telling me that it was a technical term was worse to me than just saying it. Why do we have to have these terrible technical terms? Why can't we find nicer ways to say these things? I've come up with a few options: Instead of "morbidly obese," why not use "pleasantly fat?" Or what about "round?" Instead of "mentally retarded" why can't we use "delayed?" Or what about "slower than his peers?" I'd much prefer these terms, but for now, we're stuck with those dreaded technical terms! Signed, The morbidly obese blob and her mentally retarded child

Uncalmable Mama

My husband and I were rudely awoken this morning by piercing screams growing louder and louder. Cam was running into our room screaming that monsters were in his room and biting his arm. Now, when he was younger I'd soothe the boy, and allow him to sleep with me in my bed, but now that he's BIGGER and harder to sleep with I refuse, unless it's for a short period of time. I searched all over my room to find out what time it was...using Cam's indiglow watch, scrambling for my glasses to read the VCR, but nothing was working. Finally Steve rolled over and mumbled something about it being 2:00 in the morning. UH...I need my sleep!! "Cam, everything is fine, go back to bed!"

My memories of the next hour are a blur of more screams, (on both sides) running back and forth from bedroom to bedroom, and frustrated cries. My son is almost 6 years old...I'm NOT used to this kind of behavior!! He normally sleeps through the night, and if he has problems, he'll cry for a while, but he'll quickly fall back to sleep! This screaming went on for an HOUR!! Both my husband and I had to be awake at 5:00...him to prepare to leave for work at 6:00, and me, so I could shower before I had to start babysitting at 5:30! We were sleepy! When Cam had woken us up we had been blissfully sleeping in a comfortable position. But after that hour of trying to calm things down so ALL of us could sleep, we were uncomfortable and grouchy! It took us a while to finally fall back to sleep, but it was a short time until the alarm went off!

Usually L and baby E will come over, and quickly fall asleep until 7:45 when it's time to get ready to take Cam to school. Not the case today. Baby E has been feeling neglected lately (Dad would rather play video games than tend to his screaming son...) and has not wanted me out of his sight for the ENTIRE day! On top of this, he's been having a belly ache lately...meaning...lots of puking and crying! He didn't fall asleep until it was time to take Cameron to school. By then I was EXTREMELY grouchy and tired!

I've devised this plan where I put L in the stroller and balance E in his baby carrier on top of the little stroller cover. With my friend's stroller it worked beautifully, but with mine...not so well! When I set the carrier on top, it balances on L's head! Forcing her to sit forward for the entire ride to school....not a fun ride for her!

So, we changed the accommodations for the pick up! E was IN the stroller (screaming) and L would hang on and walk with me. It worked, until she saw something else that was more fun! We managed to make it work...but at a VERY slow pace...L is only two, after all! We picked Cam up and for the rest of the walk home, E screamed his guts out!

At home, I went to feed the kids and as I was setting out the bowls of macaroni on the table, L went after Cam's bowl. He, naturally, told her no, and she instantly began screaming. (Here's where I get honest...) I had lost it by this time...screaming baby, lack of sleep, and now screaming toddlers?? Not a good combination! I screamed BACK to the little girl. Looking back, I know it wasn't a good move, but I was frustrated, and rather than beat the girl to death (my urge) I screamed! It was one of those primal screams...releasing all of my anger and frustration over my day...it felt good, but as soon as I was done, I felt guilt! L looked at me with shock! I didn't know what else to do, so I stuffed her face with food.

After feeding the kids, I went to feed the baby, then feed myself. The baby was in one of his freak-out moments...and was screaming for attention. I ate my lunch quickly, and picked him up to soothe him! He calmed down and eventually fell asleep. I quietly laid him down and tended to the other two kids.

Not too much later E had woken up and was uncalmable. (Is this a real word? If so, then I'm going to use it ALL of the time!!) He screamed and screamed...no matter what I did! He was fed, clean, and being held, but he was still screaming. I didn't know what to do! I was at my breaking point...lack of sleep, being screamed at all day long, and having fighting children....I did what I KNEW I had to do. I set the baby in his carrier...still screaming...and I took a time-out! I had lost it...I felt like I was losing my mind as well! I had enough and was FINISHED!! Poke a fork in me...I was DONE!!! I knew if I didn't put him down and take this time-out, then I would hurt the kid...and I DON'T want to EVER do anything like that!

Cam and L were staring at me like I was a crazy lady, which I had turned into at that point. I sat in my mama's chair, rubbed my temples for a few minutes, said multiple silent prayers for strength, and gathered my wits! At the end of this I wasn't completely calm, but something had worked...it had helped a little!
I soon calmed the screaming baby, and eventually settled the other kids enough to have naps! (I even napped for an hour as well!)

It was one of those days where I question whether what I'm doing is right for me and my family (being a stay-at-home-mom while babysitting other people's kids)...or if I really should consider doing something else! All the while I'm questioning my choices, a voice in the back of my mind was calming me down, telling me that I'm doing the right thing, but I need to take time to relax.

Am I the only one who wonders if I'm doing the right thing? Maybe I'm just a crazy lady who needs to be institutionalized! If I do, don't tell me...I don't want to think about it!

I'm seriously hoping that we don't have any returns from night terrors tonight...I'm already freaking out about tomorrow (my crazy babysitting day...) I need to refill my chocolate stash, and hope things go better than they did today!