Sunday, November 30, 2008
We are taking a step backwards in hopes that it will make the next few steps forward easier. They are wanting her to FULLY complete tasks, (i.e. putting all the blocks away,helping clean up toys, remain at the activities center the entire time, which is only like 15 minutes.) Verbalizing at least 10 times a day (that means not giving her what she wants until she talks, I'm sure it's going to be fun) Learn to approach other children in a friendly manner, sit and listen to a book for ten minutes, communicate her wants and needs through signs,words, pecs whatever she is more comfortable with (that means everyone else has to be a little more observant, lol, she communicates more then they are giving her credit for you just have to be a tune with her.), walk up five steps, scribble to fill a 1/2 page 50% of the time. She does most of these things for me already, but I have to help her 75% of the time. I know she knows how to do it, it's just a matter of doing it every day on a consistent basis.
Other then that, school is wonderful for her. She participated in a short play. She was a maiden and shook a bottle with rice in it. She had to be cued by her friend and the teacher had to encourage her to stop, but it was adorable. I forgot my camera though, sorry no pictures. She was cute in her plaid skirt, white polyester shirt, and lace apron. Needless to say she was hot & was ready to get out of the thing at the end of the 20 minute performance.
One more note, Tru has been chasing my indoor dog. Lucky, that's the dog, has always been good with her. He is a chihuahua/rat terrier mix, really small. She follows him around the house, either crawls or walks behind him. This is a great thing. She use to just touch him and go about her own merry way, but now she is interested in what he's doing and won't leave him alone. Lucky eats it up though. lol. It's a sight the two of them.
~Have a wonderful day~
Saturday, November 15, 2008
I don't think I have mentioned it before on the blog, but we are trying a product called the Miracle Belt. Right now she only wears it for 15-30 minutes a day 5-6 times a day. It really seems to be helping her some, even when she's not wearing it, I can see some improvement in her over all, already & it's only been a couple of days since she started wearing it. Basically what it is, is an extra 2 1/2 pounds centered around her waist in the front. It doesn't bother her when I put it on or take it off, so we're keeping to it.
Another IEP meeting is planned for next week. It'll be interesting to see where Tru is at on the curve now. I'm sure it's still isn't up to the expectations of others, but I'm very proud of her and how far she has come. I praise all accomplishments no matter how big or small. Tru's teacher is the same way, she really is wonderful with her. The entire staff is. Which makes me wonder if I didn't get 'accidentally on purpose' to speak with the review and compliance board, next week, about the services offered at Tru's school.
Which brings us to Tru's glasses. She has adjusted well to them and has another eye appointment next week also. The glasses that she currently wears 95% of the time aren't as strong as they should be, so the doctor may up the strength on the lens. This would be good because Tru came home from school on Thursday with her glasses all scratched up and a scratch on her nose and underneath it. Their wasn't a viable explanation offered & Tru can't tell me so.........hmmmmm.
~Have a Beautiful Day~
Monday, October 27, 2008
Can you find Tru and her new friend? They're in there somewhere.
Other than that, Tru finally got to meet some kids with the same deletion syndrome as her. She played with them a little, but they weren't as mobile as her, yet. . .they are getting there though., so she mostly played outside with older children. I was so ecstatic to finally get to meet parents that have dealt with the same things as me. I simply couldn't wait for the conference in 2009, so a few of us from the support group, who live close together, got together. IT WAS AWESOME!!!!! Everyone needs a few people who they can relate to. I was told that Tru was an inspiration for one mother, whose son was just starting to walk. . .(could of fooled me cause he was cruising all over and being very adventurous going from one piece of furniture to another. ) It really meant a lot to hear those words. It was like finally being acknowledge for all the hard work and struggles Tru has done and accomplished. I was inspired by another kids' and their communication skills, so verbal and using sooo many signs. (I am so very thankful for meeting such awesome women too.)
Well, let's just make this one long drawn out post to wrap every thing up for the friends & family. Who knows the next time I'll get a chance to post. I'm busy from the time I get up, right into my sleep. (Tre's still not sleeping through the night, uh. . .)
I had my first parent teacher conference & have nothing but positive wonderful things to say about that place. I'm dreading the coming summer when she won't be able to attend & even worse, next year if she doesn't qualify to even go there. AGH.... The teachers are great though & I'm throughly convince that Tru loves her teacher, just as much as me. . .not as much as daddy or either set of her grandparents, but as much as me. Which is wonderful cause she has done wonders working with her. Tru is following simple commands, her behavior is better, awesome really, and she just seems happier more of the time now. I guess I wasn't challenging her enough here at home. I've been told she will go up the slide by herself and go down all by herself. I can't wait to see her do it, along with pedaling her bicycle they rigged up with Velcro. I 'll take pictures. Until the next time I have some peace and quiet. . . . . . . .
~Have a beautiful day~
Wednesday, October 8, 2008
~Have a great Day~
Monday, September 29, 2008
Wednesday, we have a doctor's appointment at Riely's Children's Hospital. They changed our time on us too. It was 9 in the morning and now it's 1 in the afternoon, agh... It's not for anything major, just a check up, but I do so ever hate the flippin' drive. My mother is attending with me, so at least I'll have an extra set of hands, which I'll need for Tre'. We're taking her vehicle which means more space too, so YEAH! I'll let cha'll know how it goes.
~Have a Beautiful Day~
Thursday, September 18, 2008
~DEALING WITH BABY BROTHER~
Tru is adjusting to Tre' quite well. She doesn't like it when he cries though. She seems to be comforted when we tell her that he's okay and explain what is wrong with him. On day I had her sitting at the table eating her lunch and he started crying really loud. I swear she said, "What's wrong?" I didn't let the question faze me, even though she rarely speaks so well, I told her he was hungry too & she said "Oh." and went back to eating while I fixed Tre's bottle up and fed him.
I'm always encouraging her to be a big girl and SHOW her baby brother how to do things, such as feeding herself, picking up her toys, getting dressed. I think it has motivated her some what cause she is really making great strides in these past couple of weeks. I know alot of that has to do with being back in school. I've made up my mind that this summer she is going to have to do a play group or something so she doesn't have any regression like she did last year.
She has accepted that Tre' isn't going anywhere, but she still doesn't really love on him though. She refused to hold him when she's sitting on the couch. She doesn't mind it when we hang out in her room with her and play, but she doesn't want to touch him at all. She's coming around though. She's starting to sit next to us and climb up on the bed with us instead of avoiding us and shutting herself in her room. I really do believe that she was mad a me for having him, but she seems to be getting over it. I just know that in a few years those two will be inseparable & be the best of friends.
Well, I've got many things that need to get done.
~HAVE A BEAUTIFUL DAY~
Wednesday, August 20, 2008
Have a beautiful day!
Sunday, August 17, 2008
~Tru is now a big sister~
On August 11, 2008, Tru Legacy got a little brother, Scottie Lee the Third. We thought he was going to be a girl, but . . . . God works in mystic ways. I'll get pictures of them together when she adjusts a little better. I tried to get her to hold him and she pushed him away. She doesn't try to hurt him though. She steers her power wheel around him & doesn't try to run him over, so that's a good sign. I'm confident that they'll be the best of friends once they get use to each other.
Thursday, August 7, 2008
Well it looks like this school year she may not receive OT & PT as I had hoped. Since she is in the Headstart now, the therapists at the public school are not available to her. Or at least that is my understanding as of now. I'm in the process of corresponding back and forth to find out more about it. Either way though, I have weighed the pros and cons of going to the Headstart versus the Preschool & I still like Tru's odds in the Headstart. She may only receive Speech therapy, but the simple fact that there are only 18 kids & 8 or 9 teachers, where as the preschool has 30 kids & 3 teachers. She needs that hands on attention to learn & both Scottie Lee & I agree that the Headstart will be better for her this year. I'm not knocking the public school, but the Headstart is our best option this year.
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
~Have A Beautiful Day~
Wednesday, July 23, 2008
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
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
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;
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
Sunday, July 13, 2008
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
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.
Thursday, June 26, 2008
I can hear her playing with the letter p in her babbling. I'm going to look up the sign language for potty. I have it on a paper somewhere. She's not really using many signs other than eat anymore. I know that's my fault by I love to listen to her babble and when we concentrate on signing she doesn't talk as much. She's been doing really good with the picture phonics though. I'm waiting for my battery's for my camera to charge up before I make a magnet with a picture of her on the potty. The other day she grabbed my hand and took me to the fridge, where all our magnets are located and pointed to cup. I opened the fridge and got a drink out and let her shut the door. She stood there looking for a second and pointed the Scottie lee's photo & send Daddy. I praised her on identify daddy, gave her the cup, & she ran off giggling.
WE'VE HAD ANOTHER SUCCESS! About four o'clock. She was with the memaw & papaw most of the afternoon. They tried around 1 o'clock and there was no luck. When she came home she at a snack & I sat her on the potty again. After about 5 mintues, she tinkled & hopped off the chair. We put another sticker on the chart.
Wednesday, June 25, 2008
10:30 a.m. - That was easy enough. She does so well feeding herself. She won't let me help her anymore, so I just sit & watch. She squishes up her face when I try to move the food around so it's easier for her to get. Then she'll throw the spoon down and just use her hands the entire time, so I don't touch her food. I love that little squished up face she makes. It's better than her screaming, she's got a set of lungs on her. If we happen to be out in the store & she starts screaming I place two fingers over her lips and correct her. It worked really well last week in the Dollar Store. I'll see if it works on our weekly trip to the grocery store today.
~IN THE PEACE & QUIET OF THE NIGHT~
Tru did really well today. I took her to the public pool for the first time. She had a blast! She hated when the lifeguards took their 20 minute lunch & everyone had to get out. I sang some songs and gave her cookies, but nothing could take her mind off of the water & why she had to get out of it. I reapplied her sunscreen at that time but forgot to do her face. It's pink as hell now. : (
I feel so bad. I have aloe though and I've applied it a couple of times. I'm thinking tomorrow is going to have to be a mostly inside day for her. After we got done swimming we went to the grocery store & her behavior was remarkable. I think she was too tired to care what was going on cause the air conditioning felt great. Overall, today was great fun. There were a couple of incidents at the pool that were a lil' dramatic, but nothing too over the top. She calmed down when I explained what was happening or gonna happen & of course sang to her. I'm exhausted myself, so Good Night. . . .