The Conference is only 4 DAY AWAY

I can't believe that it will starting this weekend. I'm looking forward to some girl time with Tru. (get away from that trouble making brother of hers) I fear that being home all summer is taking its toll on her. I guess next year she's gonna have to do a daycare of some sort to get keep her in a good mood. It's not her ears bothers her, other then her natural aversion to loud sounds, I'm pretty sure it's just missing being around other kids her own age and away from home, my little birdie just wants out of the nest, lol. I wonder if it could be her glasses, she's broken them again cause she kept taking them off, which she never did there for the longest time, good thing the eye doctor appointment is coming up. She was suppose to go this week, but it got rescheduled.

I can't wait till this weekend. She usually does pretty good in the car. So long as we have our tunes and someone can hand her what she needs. I can't wait to see her with all the other kids and in the pool where her feet can't touch. I haven't taken her to the public pool this year because we got a Walmart special for here. She's floating in that one, but she knows that she can touch the bottom and her head still be above water. The swimsuit has the built in life vest, but I don't know how well it's going to work. I'll find out soon enough I guess. I promise to get lots of pictures.

~Have a Beautiful Day~

Summer Sun

Things have been good. Tru does seem to be missing school. She's a very happy little girl right now since Daddy is home from work for awhile. We bought her nice size pool this year since she has to share with her brother and I. She didn't forget how to float from last summer. She's out of the float riders and into a suit with a built in life jacket. It's the new summer attire for her when she's outside because of the pond. She's also figured out how to get out of the fence. She's is so very clever.

Tru has been talking more. No sentences, but she just blurts out words sometimes. The most recent new word I've heard her say is awesome, which is AWESOME (guess it's easy enough to figure out where she picked that up from) I had asked her if she wanted more cookies, lol. . . Food is a good bribery tool with her. We've switched to the 100 calories cookie snacks.

She has been holding her ears and having more notable crying fits. Good thing she is going in for a check up on July 6th. I'm thinking the tubes may have fallen out and she's getting a build up again.

~Have a Beautiful Day~

~Back on track~

Well, Tru has had her EEG and Tubes put into her ears. The EEG came back normal, so that's a big weight off my shoulders. The tubes have helped her so much already, her balance is imporved so much & some of her behaviors have subsided. She isn't screaming as much, mostly because I think she can hear herself. She's stopped banging her head all the time. She still does it when she's really tired and fighting sleep. I'm hoping in the next couple of weeks that her speech will start picking up. She was out of school for two weeks when the tubes were put in and then there was the winter break, so I'm happy to report that she was ready and willing to go back to school today. She was so well behaved at the bus stop this morning. She listened when I told her to wait until the bus stopped to load up & walked up the three steps, holding onto the railing, with very little help. It's amazing the differences I see in her already. She is kissing her brother every day now, upon request. She will even crawl up in bed with us and watch tv. She still has a bunch more doctor appointment to verfiy exactly how well she is hearing. They could tell that she was hear the octatives that didn't register before, but we have to go to the Easter Seals Clinic for more in depth observation. I'll try to keep this up dated a little better then I did last month, my computer had a virus and it took me forever to fix it.

~Have a Beautiful Day~

**Moving right along**

Well, now that the Thanksgiving holiday is over, the IEP is done, doctor appointments are scheduled for the month of December, Tru's gotten her new full strength glasses, school fund raising is winding down till the spring, & I'm caught up with my online class I can tell everyone what Tru's new Individual Education Plan is.

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~

Mom's Movie Day

Well, I finally got to go on my first field trip with Tru. I was so worried she wasn't going to enjoy herself, just like the Halloween party we held, but I was so very wrong. She sat through the entire movie except for the last 10-15 minutes. WHAT A SUCCESS! No screaming or yelling, she just sat there eating her popcorn and drinking her sweet tea. If I must say so myself, she was better behaved then some of the other kids. We didn't go with the rest of the class to eat McDonald's though. I took her to the park for awhile and enjoyed it being just me and her. We had the run of the merry-go-round, which delighted her to no end.

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~

ABR TEST RESULTS

Well, we've made yet another "successful" trip to the Riley's Children's Hospital. This successful trip determined that Tru could possible have fluid on her ear drum, which would explain her balance being off, possible headaches, and her all around crappy attitude some of the time. So. . .yet again. I am waiting for another phone call to schedule an appointment with an ENT doctor, to check for fluid & if there is no fluid, get some drops to help clear her ear wax better. (She has such tiny little ear canals.) So we wait to make another trip.

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~

Visit to Riley's Children's Hospital

Well everything went smoothly on our trip to Riley's this year. No getting lost the the bad parts of town. Tru and Tre' were both well behaved in the back seat on the way up and back. No screaming fits or crying. The visit with the doctor was good. They couldn't get an ABR test scheduled for that day, so I'm waiting for them to call, if they don't call by the end of the week, I'm calling them. I did tell them about my concern about Tru having headache. Since she has gotten her glasses them seem to have subsided, but she still gets them every now and then. I feel so bad for her when they bother her. She just puts her little hand either on the side of her head or on her forehead, depending on what type of headache it is I guess. I wish she could tell me so I knew for sure. The doctor said that they could put her on a daily medication that would stop the headaches all together, but at what cost I wonder. I told her if the headaches every started occurring daily, we would revisit that issue but until then. . . every time she gets a headache, she gets a dose of Tylenol, and I lay with her in a dark room and hold her close to me. At school , the plan is to let her lay down in the isolation room without the lights on and have one of the ladies sit with her & comfort her. If it doesn't improve in an hour or so, I would come and get her. It hasn't come to that though. Like I said the glasses have really improved the symptoms. I'm keeping track of it now & the teacher haven't mentioned anything to me yet, so we carry on. . .

~Have a great Day~