She rages on...

I'm at a loss. I give. She wins. Parenting this way is a nightmare and I don't know how to do it.

Courtney is my gorgeous, intelligent, amazing 9 year old daughter. She challenges every fiber of my being. She is so controlling and nosey and if she doesn't like what's said to her or the way her brother looked at her and she keeps repeating STOP IT STOP IT STOP IT over and over again until she is screaming at the top of her lungs. It's unstoppable. Then she needs her asthma inhaler which I don't even think she really needs but she is hyper ventilating and then she is nauseated and melts into a puddle. Then a whopping pounding headache occurs that she's screaming about like she's dying. Ahhhh I'm exhausted just typing it. I hug her, give her tylenol and she is back to normal and the reason she was freaking out is suddenly unimportant. ahhhhhhhhhhhh how to I make it stop. Humans look at people. Kids are kids, if my 5 year old doesn't do it right the way Courtney tells her to in the game they are playing Courtney screams at her. I'm most sad for Reagan about that part. It's not right and now I think Reagan is doing it at Kindergarten.

All consequences in her life are somehow my fault. I take a way a privilege because I've had to ask her 15 times to get dressed for school. It's all my fault. She has a matte in her hair because she didn't brush it before she went to bed and I am supposed to get it out for her and it's all my fault. She goes into a complete rage when I suggest the thought of cutting her hair shorter so it's easier for her to care for. It's down to her waist for crying out loud. She sits at her homework and stares at it and it's my fault when she goes to school when it's not done. Rage on little girl rage on. I am at my wits end. I do not get physical with her. When I have to get out the door to get my other kids to school I just take on the roll as if she is a toddler but I have been kicked in the throat before. It's tough. One time she screamed until her nose bled.

I'm so lost I don't know where to turn. We have NO IDEA if she's having seizures in the night. The doctor seems completely unconcerned about it. The teacher at school said she's gone from straight A B student to almost failing if this continues. These last two years have been living hell. She is making it living hell for each and ever other person in this family of 5. It's not fair. Reagan is starting to act like her. Jordan laughs when she does it. He's so mellow that he doesn't understand. If you don't react to her or you ignore her issues she climbs right in your face and growls and stomps like she's going to fake hitting you.

Ahhhhhh I'm hoping typing this out helps me relieve some of this stress. We are having 1 to 2 rages per day lately and it's been 2 today. I'm spent. She did do her homework though. Thank you lord. She socializes just fine so why can't she function with her family? After her seizure she seemed to stop raging and I thought it was the Prozac that the pediatrician put her on. He upped it recently in hopes it would help but WOW so far no go. Worse not better. Where is my beautiful baby girl? I know she's in there. I glimpses of her and I want to soak up as much as I can when she's there so I can get through these times.

Remicade is magical for me

I am soooo much better. I love remicade and I feel so much better that I am only taking regular strength tylenol instead of codiene tylenol. It is a miracle to me. I am in love.

This second infussion went off without a hitch. 4 weeks now until my next one. I had the pleasure of meeting an elderly lady who was there for her first infussion and scared to death about the risks of the medication. I told her how I felt about improving my quality of life so I could adequetly parent my children and get more out of life than I was before this opportunity. I also feel lucky that this medication is available to me in my lifetime. When I was finished she got up and hugged me with tears in her eyes. She told me that she was certain that she was meant to cross paths with me and I had convinced her to remember that she needed to live with a more positive attitude towards life. I'm so glad that I could help her. My world is not really unique to any other chronicly ill mom out there. I don't think. I just need to remain that glass is half full attitude. Not that it's always easy. Every day is a challenge.

I can't believe how much laundry I need to do or that the Christmas trees (yes we have 2) need to be put up and on and on and on. Not to even mention the tiny dent I've only begun to put into the Christmas shopping. At least this year I will do it feeling better than last year. Putting one foot in front of the other is a little lighter than last year and that is the most wonderful Christmas gift ever.

Hopefully soon my colon will stop bleeding and I will no longer be enemic. The sight of so much blood is always sooo unnerving but that in itself is a bit of a hurdle to overcome. It's only been not quite 2.5 weeks but most of what I read says about 8 weeks till possible remission. I pray it's so. I think I'll call my gastro doctor for a pep talk today. He is an amazing man who always has time for me. A ton of my symptoms are better and that's so fabulous.

If I can raise 3 kids and foster a healthy marriage through this I can do anything. Right??


Laurie

Remicade

1st infussion done. Called day 0 and then 2 weeks and 4 weeks and then every 8 weeks.

No side effects that I noticed. I was tired when I got home and went to bed for the night in the late afternoon noticing some waking with hot flushing feeling in my face. Other than that it was pain free and fine. I drove myself an hour and a half to the clinic where the infussion took place and then drove myself home.

I did notice that a week after the infussion my bowel movement was solid for the first time in years but there was a significant amount of blood still. I know that's probably way too much information for my mommy blog but the first thing I did was go to good old google for some info on response to treatment times and could find nothing. So if I help one poor scared person out there just starting remicade then well it's worth it.

Unfortunately my 9yo daughter Courtney woke up with a lovely vomit fest of the flu yesterday morning and I now have it. Not really cool when your immune system is trying to infuse with a new drug and you cannot even get said drug if you have the sniffles. Soooo needless to say I feel like crap warmed over and pray it's completely cleared up for my next infussion this coming Wednesday.

Oh and I've managed to cut my T3 usage in half since starting the remicade. That speaks volumes to me. I still feel kinda yucky but the degree of yuck is much less I guess. I used to go for the tylenol when my sides were burning so bad and my back could not stand another minute of pain and everything just hurt all over. I would be near tears and now it's just way easier to get through the day. The inflamation in my body must be decreasing. It has to be for the pain to be that much less.

I am very pleased and only one infussion in. Goooo REMICADE!!!!

The day my life changed forever...

With all the wonder and excitement we packed and got up at the buttcrack of dawn to leave for our much anticipated trip to our family's farm. The kids were beyond thrilled to finally be leaving as we had missed the last year due to mommy's health so the fact that we were getting to leave on a Thursday morning and stay till Monday was perfect to them. Missing 2 whole days of school was fabulous. They bragged for weeks to their friends about how they were going to be riding quads and horses while everyone else would be sitting at a desk. Hubby and I had 3 very excited children.

Off we went. A quick stop for gas, coffee filled up and hit the freeway with the kids all snuggled up in their seats. Jordan sprawls in the back with his sleeping bag over him and the girls strapped into their gigantic britax husky carseats belted in with their blankets.

Forty-five minutes into our journey Hubby and I are chatting away and I can hear some kind of gurgling in the background. 3 kids behind us we expect them to make strange noises to eachother. This consistant gurgling sound was still going on so I looked back...

My beautiful amazing Courtney's eyes were rolled back in her head, she had bubbly foam coming out of her mouth and her hands were curled up so tightly under her chin. She was jerking around wildly and it was not stopping. She was not responding to anything. Dean kept asking me what do I do, what do I do, and I told him to pull off at the exit and pull into the hospital. Thankfully we were just before a freeway exit to a very small town hospital. Just before we got to the hospital she came out of it. I calmly explained to Courtney that she had had a seizure and we were taking her to see a doctor. At Hubby and my best guess it seemed to have lasted about a minute and a half. A grand mal seizure is not something that any parent should have to see their child endure.

The doctor did her vitals and she seemed fine. We left the hospital and imediately phoned our family doctor. He told us to take her straight to our home town hospital and he would have a pediatrician meet us there. Once we arrived we saw the ER medical doc and he said that he suspects that Courtney's previous infections when she was younger such as the blood infection when she was 3 years could have caused some scar tissue in her brain and this could very well be the issue. We then saw the pediatrican and he sent her straight in for a CAT scan. It came back normal and Hubby and I were sooooo relieved. While in the hospital though she began having these tingly sensations that happen all over her body and are followed by feeling nausious for a bit. This happened once in the hospital.

The entire time throughout all of this drama Courtney was concerned about her trip to the farm (it's an 8 hour drive). Over and over again she asked the doctors if she could still go on the trip. We kept telling her to wait and see what the doctors had to say. They said take her so we went. She was fine. She had one tingly episode on the way home and then a dozen more once we arrived home.

An EEG was performed and it came back normal. The why did it happen has us devestated.

The past year Courtney has gone downhill in school from the smartest kid in the class to the scatterbrain that cannot remember, been having horrible rage attacks where she cannot stop herself and doesn't care who it happens in front of and when her brother and her fight and he holds her to prevent being attacked by her she gets this absent look in her eyes for a couple of seconds followed by melting into a puddle of tears and claims she feels like puking.

All of these factors put together have me most worried. We were booked for another CAT scan with contrast dye and the radiologist told us when we arrived that the previous test asks for an MRI and NOT a CT with contrast. We were confused and went to talk to the pediatrician that we saw at the hospital. He has put Courtney on an anti-anxiety med (prozac 10ml) and so far no tingly feelings again so they might have been anxiety attacks. It still doesn't help us to know why she had the siezure or what it means when she fights with her brother and her eyes dialate and she changes so quickly. This pediatrician seems to just want to wait and see if it happens again and not do the MRI.

I don't know what to think. I am happy that she is going back to school (first day back yesterday) and is getting back to normal. She isn't scared anymore and that's so important to us.

After seeing that I don't think I'll ever be the same again. I won't ever look at Courtney the same again. My beautiful amazing daughter...

Why?

Marie-Therese Gown GIVEAWAY !!!!!!!

Marie-Therese Gown GIVEAWAY !!!!!!!

The MOST BEAUTIFUL GOWN I HAVE EVER SEEEEEEN!!!!!

A must see. And she's giving it away!!!

Ohhhhh to be so wonderfully talented.

My daughter's not ready for kindergarten...

It has been a rough start. I seriously would like to just pull Reagan and home school her but I don't think that would be the right answer. She needs to get with the program (for lack of a better way of putting it) eventually. Reagan would see homeschooling as punishment at this point.

You see we all know that Reagan is a "spirited" little girl. Into everything, very busy all the time, feels that she is always the most important person in the room, and very demanding when she needs to let you know what she has to say.

I don't see these as poor qualities in a child. YES I am aware that she has her own ideas and doesn't always follow direction when told to but she also is not a robot child.

Reagan is very interested in rhyming, matching, colors, and what everything is and absorbs everything she has learned from the teacher to date.

SHE CANNOT WRITE HER NAME ON HER OWN!!!! The teacher is having a fit about this. All 22 of the children in the class began with sitting at the table tracing their name a few times and then they move on to centers (read playing with toys). Now she has taken the tracing away and having them just write their name all by themselves. Reagan is lost and the teacher thinks it's a huge deal that Reagan still needs to trace it. I don't thinks so because it will come at her own pace. We practice at home and she now is REALLY embarrassed about the whole thing. Yesterday I printed worksheets for her to trace and write it herself at the bottom and she is having a hard time but she does do it with prompting. She won't attempt writing it alone in the blank lines without prompting and me standing there coaching her. She is really nervous about how. She seems to get nervous and shut down.

This teacher has ALWAYS made me nervous. She is very blunt and intimidating. She is shutting down every time the teacher puts expectations on her that she can't quite do yet so she just sits there.

The teacher is getting frustrated with Reagan and she knows it. By the end of class Reagan is doing her own thing is what the teacher tells me. She is very curt when she tells me this like she is miserable about it. My sister was there when she said that to me and we were both kind of stunned. She says it and just walks away.

I don't know how to help Reagan. I want her to love school and this is not a great start. Almost every day she tells me she almost cried at school today.

The things she has done in Reagan fashion

She put a bead in her ear and yes the teacher freaked and scared the crap out of Reagan. I don't know why she would do such a thing. That's just Reagan.

Then on the playground Reagan threw rocks and got a time out. Yes I was horrified that she would throw rocks and I'm sure she need a time out!

Now the listening issue and keeping Reagan on task is becoming a major one for the teacher and I think Reagan is rebelling against the teacher.

I'm stuck. I talk and talk to her till I'm blue in the face but I refuse to punish her for learning and trying to figure out what this school thing is all about. We are only in the second month.

Yesterday was the worst day for her and she was made to feel badly. She was given a piece of paper like all the rest of the kids to write her name. Reagan sat there. The teacher first took this as misbehavior THEN finally brought Reagan a tracing sheet and did it with her making a big deal of it. THEN moving onto an art picture to which Reagan shut down and did not do. AT this point the teacher took Reagan to be defiant. I am sure Reagan was embarrassed that she missed playing in centers by this time and was sad and confused so therefor shut down and couldn't function the way the teacher wanted her to.

I don't know how to help Reagan love school. This teacher is not helping matters at all.

UGH

Laurie

Just some boring stuff...

Reagan has been doing much better with Kindergarten. I think she's getting into the groove of things. Transition is tough for her I think. We did purchase a pre K workbook from Costco and she loves to work in it. She matches letters and knows her colors but really doesn't care what a letter is at this point. It will come and I don't believe in pushing anything with her. She'll just push back.

Remicade is coming soon. I need to wait until the middle of October for my darn TB test at the local health unit. We've got a mumps outbreak here so the health unit is swamped and just can't get my darn TB scratch test done until Oct.9th. Other than that it's all approved and affordable. I've developed the shakes lately so I'm really hoping someone calls me to let me know if I need another iron infusion soon or not. I don't know if I'd shake or not if my hemoglobin is low but it sure sucks. Keeps me away from the coffee for sure.

Courtney's teacher applied for a new position at the beginning of the school year and is now leaving one week into the year. So the poor class of grade 4's have been stuck with a sub since the second week of school while they wait for the school board to figure out who gets the job. I can't believe that my kid has to endure this. Last year was so horendous for her that this just takes the cake. I just pray that this teacher is kind and caring with the kids. I can see the anxiety coming out in Courtney every morning before school already. I cannot handle another repeat of last year.

Jordan seems to be doing his homework so far. He almost has enough lawn mowing hours to turn in to buy a laptop for himself. He's over the moon excited about it. I'm happy for him to reap the benefits of his hard work all summer. He's done good even though I've had to stay on top of him constantly. I hope it will get easier. I need to go into his school and talk to the school psychologist to make sure they get all his testing under way this year. He needs all of his learning disabilities tended to and monitored constantly or he'll just sit there doing nothing and saying nothing. He's more argumentative than ever with me in this teenager phase.

I must stop buying all these kids clothing. That's the only way I can see this laundry crisis getting any better. We all agree in this house that the pool table has become more of a laundry table than a pool table. It is clear now and maybe daddy and the kids can sneak a game or two in this weekend but not for long. Ha!

It never ends.