Wednesday, July 30, 2008


MODIFICATIONS ARE BEING MADE TO THE SITE. UPDATES TO LINKS ARE GOING TO BE MY FOCUS FOR THE NEXT TWO WEEKS, sorry there won't be many updates of Tru. But rest assure she's enjoying the rest of her summer before school starts.

Monday, July 28, 2008


It really amazes me how much Tru learns from watching. That's why I'm holding such high hopes for school. At breakfast this morning she only ate when I ate. Which is okay now cause I eat around the same time she does, but I eat a lot faster than her & when I finished before her, she thought she was done too. I told her to eat & she'd repeated it right back to me, "eat". She said it more like a question than anything else. So needless to say I had to sit down and slowly eat some more until she was done. After I sat down though there wasn't any problems. I just wish she'd do more mimicking, like when it's time to brush our teeth or clean up. lol. Can't have it all though. She's doing alot of mimicking while coloring too. If I make straight lines, so does she. (Or at least her version of straight lines) If I make circles, so does she. If I stop, so does she. If I change crayons, she wants to also. Usually she wants the crayon I'm using, but she wants to be just like my little shadow, lol. It's really quite adorable. She's even trying to use the play dough tools by herself, which is awesome. She'll watch what I'm doing and then try it when I stop using whatever tool I had. She's starting to get mad when I try to help her too. She's got that "NO" down pretty good too. I'm really impressed cause she only uses it when it's appropriate, never out of context. I think I'm the only one she says it to though. I haven't heard any reports from Daddy or other family that she's saying it. Then again that may just be because I'm the only one who tells her no, lol. I'm so mean! It's all for her own good though.

Saturday, July 26, 2008

~Getting ready for a new school/year~

Well it has been confirmed that Tru will attend the LHDC Headstart on September 2. I'm glad it's not next month. I've really been enjoying the time we've been having together these last couple months I haven't had to work & it's just been me & her. Next week she has to go to the doctor to get her physical for school, & shots. ugh! It's been awhile since she's had to get stuck with a needle, so it'll be a hectic day for her. She has to have her hemoglobin checked and have a lead test. In the last week of August, mere days after having Avahlee, the teachers from the school are going to come out here for a home visit with Tru. They want to have interaction with her one on one before the other kids are mixed in. I didn't think to ask them if that was because she is special needs or if they do that with all the children. It doesn't bother me, I actually think it's kind of smart, needless to say I was impressed. I believe whole heartily that being around those other little kids is going to help her tremendously. I'm updating the handbook of Tru's communication, so that they can understand her. I was going to make more pecs magnets for everyone's house, but we never really GO anywhere for too long & she really only uses the one w/ Daddy's picture on it. She'll point to the one that we do before we brush her teeth, but it's only cause she thinks the lil' boy is cute, or something, cause she has a fit when we brush her teeth, unless she's in the tub & I sing. I wish I had a video camera so I could share her giggle with the world. She'll point to Daddy's picture and I'll give her the magnet & she'll run off giggling. She doesn't chew on it, rephrase that. . .she hasn't yet. Her last IEP, or what ever they are calling it this year, was really pushing the PECS for communication, so we've been working with it. I really feel out of the loop cause she didn't have scheduled therapies all summer, I've done what I could and she's coming along, but I really noticed a plateau, even a little decline, with her speach, behavior, use of fine and gross motor skills, next summer I'm going to have to enroll her in camp or get private therapies of some sort. She needs constant interaction for improvements and growth. I would never dream of denying her that, but . . . I've always felt a little guilty that I went back to work right after she was born, I lost all that precious time. . . . I still got plenty up these sleeves for my angel girl though. She's excited about school though. She's going to be riding the bus this year too. It's not one of the big yellow school buses, it's more like the supped-up van /buses I drove for the nursing home. The only thing I worry about that is, she has a fit when we leave the school. I guess we'll see when the time comes. I just want her to have fun and be happy. I don't want the experience to frighten her to death, I can't go with her though, even if I wanted to, I'll have Avahlee . . . . . . I pray it's just like last March, when she started preschool at PC. She won't need me, too much. I still have to work out the therapies w/ the people at PC, but they are still on vacation until the 12th of Aug. so no one has responded to my inquires, I've made plenty to no avail. I'm confidant that sometime between the 12th of Aug. and the 2nd of Sept. I'll get it straighten out. That's the time frame & I'm sticking with it. Getting glasses for her is the next thing to, I'm tired of waiting for the insurance company. I'm going to make a couple more phone calls, but if it doesn't happen quick, I'll just pay out of pocket. . . . I guess. Well I gotta go, Tru is awake, she'll be asking for breakfast soon.

~Have A Beautiful Day~

Wednesday, July 23, 2008

Talking more & being and ANGEL

Tru's speech is really improving. In great leaps it seems. The other day I left her with my friend, the one who made me realize that sometimes I don't pay enough attention to detail. I had to do a bunch of running around & it was too hot to drag Tru with me. When I got back & was relaxing before going back out into the heat, Tru was just jabbering away about Dadda, byebye, Momma, go. I guess she was ready to leave cause when I told her we'd being leaving shortly she told me NO. She said it twice, clear as day. That's the first time she'd said it. She hasn't really used it since then, but then again she gets almost everything she wants, so she has no reason to say no. lol. She's been saying all her words really quietly though. I don't know what's up with that, but I've really had to keep my ears open for words. She says them so quietly that I can hear them when she says them, but it takes my brain a moment to register that is was REALLY a word.

We're getting ready for school this week. I'm making phone calls and getting paper work straighten out. I was really surprised that she had to have proof that she had attended the dentist this year. She went when she first turned three, so she doesn't have to go back again till March, but they actually need a paper saying that she's had a check up in the last six months. I'm really getting excited for her. Hopefully they'll keep her busy enough to keep her learning. I'm just so lame anymore that I'm no fun. We still managed our weekly outing last week, but it nearly killed me. I'm gonna do some painting with her today, maybe. I feel bad for her, but every day I get closer to my due date the less I feel like doing anything. It's killing me to take twenty minutes to even do this post. I've got no energy. We make do though. I'll feel better when she gets around the other little kids and gets to interact with them. I really feel that it will help her speech a bunch.

Wednesday, July 16, 2008


Maybe it's just cause I'm 8 months pregnant and carrying all this extra weight, but IT'S TOO HOT TO EVEN MOVE! Tru and I did get out of the house early this morning and made it to the park before the sun really warmed everything up. She ran around for 20 minutes and then we laid under a shade tree for awhile. Apparently she had enough of it cause she headed to the car on her own. We went and visited Grandma and then Daddy while they were on there lunch breaks. Afterwards we went to the store. She was so well behaved and the cashier even said so. (The lady is always there when we make our weekly trip and has seen how upset Tru gets if she's into a mood.) The only fit she's had today was when we drove past Me maw & Papaw's house, & didn't stop. lol. If I hadn't of had groceries I would have stopped but the fit only last 10 minutes tops. When we got home I was going to sit out on the swing and let Tru run around in the yard, but Tru had other plans. She ran to her small pool, seen that it was empty, turned around, & crawled up on the porch and said IN a couple times while I unloaded the car. She really amazes me.

The other day when we, Tru & I, were visiting a friend I had my eyes opened to how stupid I really am sometimes. My friend has a lizard, is just a little one that lives in a 10 gallon aquarium in her living room. Tru was over there watching intently, just as quiet as a mouse. When she walked away from Alice's, the lizard's, cage, she was sticking her tough in and out of her mouth. Just like the lizard does. I, being the simple minded adult I am, asked her what she was doing. It took a younger version of myself, an almost 17 year old, to remind me that was what lizards do & Tru was mimicking what Alice was doing. DUH! How stupid am I? I work with her daily of trying to get her to mimic different behaviors and activities & here she's doing it on her own & I'm questioning what she's doing. Needless to say, once again Tru has put me in my place.

Just a little side note, I have started to chart Tru's behavior & must say that it's amazing how good of a child she is. The whole chart is either green or yellow. There is only 1 little spot of red on it in the past two days. And that was only cause Mommy didn't stop when we went past Me maw & Papaw's. Tru really is such a good child & has done me proud the last couple of days with feeding herself, helping dress herself, being well behaved in public, and keeping herself entertained when I'm too tired to even move. I AM THE LUCKIEST MOMMY ALIVE!

I almost forgot to mention that she is improving her speech with the sing-a-long video she's fascinated with right now. She's humming and trying her best to sing along. There's a song on there, Barefooting, ever time they sing "We're barefooting" she trys to say it too & she either looks or touches her feet at the same time. I love the actually comprehension that she is starting to display at the oddest moments.

Tuesday, July 15, 2008

What is a 1p36 deletion?

What am I trying to raise awareness of?

1p36 deletion syndrome is a chromosome disorder where the end of the short arm of one of the two chromosome 1s has been lost. This chromosome disorder was first described in the late 1990's and early 2000's. The diagnosis frequently requires confirmation by FISH testing. The majority of children with 1p36 deletion syndrome did not acquire their chromosome disorder from their parents. However, a study showed that three out of sixty-two children do, and in those cases one parent has a balance rearrangement of their own chromosomes. This rearrangement risks becoming unbalanced when eggs or sperm are created.

Chromosome 1p36 deletion syndrome can also be called "monosomy 1p36". Monosomy 1p36 is considered to be one of the commonest chromosome deletion syndromes. The incidence of monosomy 1p36 has been estimated to be 1 in 5,000 to 1 in 10,000 live-born children. To date, more females than males have been reported.

If you want the genetic garble you should check out;

I'm more interested in looking on the ways they are improving the daily quality of their lives & what more can be done to help make it even better. We are all responsible to keep informed and help our fellow man kind when needed. I just wish there was more compassion in the world. But I refuse to be discouraged because I see the wonderful things that Tru is capable of. And as soon as I figure the video thing I'll share more of Tru's playful moments instead of venting about the screaming.

~*Order some bracelets*~

We are trying to raise awareness about 1p36 deletion. If you would like to show your support please contact me via e-mail or a comment. The information for the bracelets is as follows, There are 3 sizes.
Small, it will be rainbow swirled,
medium-one is blue with white lettering or pink with white lettering
large is glow-in-the- dark.
Price will be $3 each.
"1p36 Deletion Syndrome" is printed on each bracelet to show their support.

**Keep in mind that the small is big enough for children. Teenagers and adults with slender wrists would probably want to order medium. A large would be perfect for adult males or ladies that don't like to have restricting things around their wrists.

I will pay to ship them to you.

Monday, July 14, 2008

A better day

I know my last post was a little distressing and it was basically me just venting, but I needed to really bad. Today was a much better day though. Tru and I spent the day running around & she was an angel compared to how she has been acting. She was well behaved in all the stores we went to & only had one melt down in the car. I think it was because it was hot and she was hunger, so it was a wonderful day for the both of us. It never seems to fail, when I think I'm at the end of my rope and I just can't take it anymore, my friends and family always come through for me and provide that little pep I need. Or that little kick in the ass, that tells me there's no need to feel sorry for myself cause it won't get me anywhere anyways. I want to thank those who listen to me rant and rave and give me the reinforcement I need or the make me open my eyes to reality. Ya'll know who you are. Thanks so much, I love you all dearly.

Sunday, July 13, 2008

Screaming Out LOUD!!!!!

Maybe it's just cause I've been stressed out with my graduation and birthday this weekend, but Tru has been an absolute tyrant. If she doesn't get her way she screams and screams. I'm not joking or embellishing when I say she screamed for an hour straight this morning. All because her Daddy had to leave to do some work for a couple of hours. She wanted to go outside when he did but we weren't dressed and hadn't even had our morning routine half way completed. I explained to her that we'd be leaving soon as I got everything straighten up and we got dressed, but it didn't do anything to appease her. I gave her the minute and half bitch session she always gets when she goes into one of her moods but that didn't help either. As soon as the microwave went off she hopped out of the chair, ran to her room, slammed the door, and proceed to yell and scream at her toys & her favorite sing-a-long movie. Thankfully, knock on wood, she isn't banging her head on anything. She is still hitting herself in the head with her hands, but not on hard objects like the tv, floor, or tables. It got so bad this morning that I gave in to taking her outside, even though I wasn't ready to go outside. I put her in her swing, which she usually loves, but she still had a fit. It just so happen that Daddy was back from working for a little while, thank god cause I'd have never gotten anything done. He couldn't even calm her down though, he had to put her in the car before she would relax. Then he proceed to tell me she was absolutely having a fit when I stepped back into the house for a second, as if I couldn't hear her. I snapped at him and told him she'd been throwing a fu*king fit since he left. (SORRY BABE, I DIDN'T MEAN TO FLIP BUT I WAS AT WITS END THIS MORNING) I'm just so frazzled right now & Tru isn't making it any easier for me. Sometimes it's like she can't get enough of me. She follows me from room to room and jabbers to me all the time & then other times it's like the very sight of me throws her into a spiral of erratic behavior. I can never just actually leave her alone cause I'm scared she'll hurt herself. I let her think she's in control though cause I'll give her time to herself if she runs off into her room and slams the door, but as soon as I open the door to check on her, she slams the door on me or starts another fit. She seems to be losing her tolerance for me. I guess it's cause she's been spending 24/7 with me since school has let out, but there isn't much I can do about that. I'm hoping the new headstart and being around other kids will help improve the situation. I'm thankful school will be starting around the same time Avahlee is born, so that I can have time alone with the new baby, but I'm starting to have doubts about how Tru is going to deal with it. I love her more than the world and only want the best for her, but I don't want her to be. . . I'm not sure what the word is that I'm looking for, but I know that I want her life to be the happiest and healthiest it possible can be & right now I don't feel like it is for her. I'm so upset about it that I'm having trouble sleeping and having bad dreams when I do get to sleep. I had a dream the other night that Tru and I were at a beach of some sort & she commanded the turtles to attack me & them did. I just don't know anymore. Maybe it's just the hormones and everything will straighten out after the baby comes, but I'm worried. . . .

She doesn't even enjoy our daily activities anymore. Trying to get her to paint, color, do any hand over hand activity is like the start of WW III. All she wants to do is her own thing & even then she gets upset about something. I'm all for letting her express herself, but the manner in which she is doing it now is driving me to the end of my rope.

On a brighter note, she did really well when we went to the store today. She did start to get loud at the end, but she hushed when I talked to her calmly and entertained her with finger-plays as we waited to get checked out.

Wednesday, July 9, 2008

*Back to Normal*

Well, Daddy's vacation is over, so we are trying to get back to a normal routine. It was lovely to have him home though. The fireworks over the holiday weekend were awesome, but Tru didn't really fancy them this year. They were too loud for her. Last year it wasn't a problem, but she wasn't a happy camper this year. I didn't really push the potty training over the weekend. We were so busy visiting and running places. It was the first thing we did this morning when she got out of bed. She didn't go, but she sat there for a good 15-20 minutes. She fed herself breakfast & helped me clean up & she's back on it again. I try to keep the potty in the same room with her, but I really get tired of hauling it around so I think we'll just leave it in the living room. I can't keep it in the bathroom cause she just won't use it. I even tried to put the whole potty in the tub and have her sit on it, but she wouldn't have it. If she's in the bathroom then she wants to play in the tub. Oh well. I'm really just trying to familiarize her with the concept of the potty. I figure I have the time and it can't hurt, CAN IT? If anything it gives me a chance to interact hands-on with her every 45 minutes. I think that may be some of the problem though. She won't poop when I'm around, she likes to be alone. I don't blame the kid. She still hasn't pooped in the potty at all, is always been pee. I've started to only sit with her for about 5 minutes and then leave her alone. When she gets off the potty I come back to her and we look in it and I ask her if she's done and she'll help me close the lid or sit back on it if I make her. Once her lil' butt starts turning red I let her close the lid. I feel kind of bad, but she doesn't seem to mind.

It's a crappy day today so I've got some arts and crafts planned. I was thinking we'd make Daddy a picture that says we missed him. She really does to. It was the first thing she said this morning "DAD?" I reminder her that he had to go back to work and that's when she sat on the potty & looked at a book with me, so he was forgotten for the moment. She hasn't asked for him again, but come 3 or 4 this afternoon it'll be "DAD! DAD! DAD!" "bad mama! bad mama!". I truly believe she gets bored with me. I feel much better this week, so I'm trying my best to keep her busy. I'm gonna take some pictures of what we've been doing, as soon as my batteries for the camera charge. I'm took video of her eating this morning, but I ran out of memory. I'm going to experiment and try to add the video sometime today . So if the page is messed up that's why.