Archive for the ‘Journals’ Category

I’m always concerned about my daughter’s hands and arms.  There are sometimes she seems to be so strong… like when she is pulling on my arms.  But there are other times that they seem so very weak, like trying to pull a shirt over her head.

Well, Leah Rose loves to go bowling.  This may be one of the things that she may not manage for a very long time. 

Today, we went to a birthday party at the bowling alley.  This has been our 3rd trip this year so far.  I was watching all the other 4, 5 and 6 year olds pick up their bowling balls and throw them down the alley.  Leah can pick it up, but her fingers just can’t fit in the holes and grip the bowling ball.

About halfway through the game, I was picking it up and carrying it to the line for her.  She also doesn’t have any power to get it down the alley, so I was helping her push it.  When we have been before, it’s just been us and not very crowded. I usually let her push it by herself and it sloooooowly rolls down the alley.   Today, just after we started playing, her ball just stopped rolling, right in the middle of the alley.  Not thinking, I hopped up on the little sideline thing and walked down to push it along towards the pins.  Big mistake, I don’t do very well in a balancing act.  However, I did not fall, thank goodness.  But I did see two other parents in our goup go down chasing little ones trying to run out down the alley.  OUCH!

So from that point on, I helped her push it.

I know nothing about bowling.  I probably won’t ever know much about bowling.  I probably won’t ever score over 65.  But, who knows? Leah may be playing in tournaments one day, and be a bowling star.

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We are celebrating Exceptional Children’s Week this week and I guess it was appropriate that the Little League had tryouts last Saturday for the Challenger Division.  I don’t know if they timed it that way or not, but it was a good kick-off for us.  There was a luncheon/reception for the teachers on Monday.  I attended the Parent’s Luncheon on Wednesday.  I was the only one who showed up, besides the Parent Mentor.  She thought it was a little odd since 6 or 7 parents showed up last year.  There were quite a few parents at the Parent Partnership Monthly Meeting on Tuesday night, so she expected a few more to show up.  Oh well, we had a nice lunch anyway.

Last night, we went to a Wild West Dance and we were told to dress-up because there would be a contest.  I thought this would be a perfect opportunity for Leah to wear the cowgirl outfit I made for her for Halloween 2008.  First, I want to share a little background on the outfit I made…  I had a red and black one when I was about 5 years old.

I was such a cutie pie!  I loved it when my daddy took pictures of me.  So, anyway, here is the one I made for Leah Rose

I think she looks so adorable, and she’s got the pose to go with it.

I really thought Leah would have a lot of competition for the contest, but it turns out there were only 2 other girls that dressed up.

and the winner is…. 

Leah, the Best Dressed Girl.

She had the best time dancing on the stage. 

I thought it was so cute that the little boy was trying his best to keep up with Leah.  This is where she stayed the whole time we were there, and had a blast.  I think at the end of this video, where she is wandering around looking lost?  I think she was looking for the speaker.  She couldn’t tell where the music was coming from.

We had our picture taken with John Wayne.

I usually don’t share pictures of myself, but since Leah took this picture, I had to post it.

A good time was had by all.  The PTO sold hot dogs, chips, drinks, and snacks.  I was grateful because that was the only supper I was going to get last night.  It was pretty tasty. 

I’m going to have to keep an eye out for the paper because there should be an article about the dance, and the winners!

If you want to see the rest of the photos, click here ==>> Photo Album

Or if you want to see the slide show, click here ==>>  Slide Show

Leah Rose – 6yo (3/4/10) 

Oh, and Horsey, I think he had a good time too.

This post has been linked up to To Be Thode’s Saturday Sound Off.

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… I don’t smell like a rotten egg.

This has been a recurring game that Leah Rose and I have been playing for a while.  I know Leah loves me, she tells me so all the time, and I’m always getting sweet hugs.  But, when we get around Grandmother or Big Brother, I’m chopped liver.  When we all go out to eat together, the big decision is who is she going to sit by.  I’m never one of the candidates for a table buddy, it’s always Grandmother and Brother.  I am NOT jealous, uh huh, no way.  She has secrets to share, and shares them with Grandmother.  I am NOT jealous, uh huh, no way.  When we are all walking together, she wants to hold Grandmother’s or Brother’s hand,  not mine.  I am NOT jealous, none.  whatsoever.  It’s a new word and new emotion for her, and she hasn’t quite figured out what it mean yet.  I’m waiting for the day when the light bulb comes on.  Should be priceless.

The other game we have all played at some time or other in our childhood…  “Last one there is a rotten egg!”.  I have heard that so much lately it’s starting to become a chant in my head.  Since my mother had her hip surgery two years ago, she walks even more slowly than usual, and to get Leah in the car in a reasonable amount of time…  she takes the long route around, circling all the bushes, and running down all the sidewalks… we would tell her “Let’s see who can get in the car and get buckled in first”.  Leah would take the bait.  It never failed.  After a while, I noticed I was always the last one getting in the car and buckled in.  I would respond with a lot of muttering and grumbling under my breath.

Now, I’m the rotten egg.  Grandmother and Leah are a “team”.  So it doesn’t matter what I do, I’m always going to be the “rotten egg”.  And I’m not jealous.  That’s my story and I’m sticking to it.

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 Last Thursday was Field Day at Leah’s preschool.  It had rained the evening prior, and was still kinda raining that morning.  Announcements were made that if it was still raining after 7am, the start time would be delayed from 9am to 10am.  When I left the house at 8:45, it wasn’t raining, but about halfway there it started misting.  I was really surprised when I got to the school at the number of parents already there.  I guess they decided they were going to take the chance and come on anyway.  While we were standing in line to sign-in, the principal came out and said it might clear up and if we would all just go wait in the cafeteria, and she would let us know what the plan would be.  About 20 minutes later, she announced that it looked like the rain had cleared, and the teachers could start taking the children out to their designated areas.

I went back out to the car to get my wagonload of stuff (I overpacked, as usual, but didn’t want to keep having to trek all the back out to the car for something, if I wanted to, so I brought it all…  chairs, cooler, jacket, umbrellas, first aid/cutter bug spray/sunscreen, change of clothes for Leah, and cameras).

By the time I got back, the first pre-k relay was over with and the second one had started.  I just caught Leah with my camera making a dash for the turn-around point  with the pole & cone.  She is the one in the middle of the photo below, with the red cone.

There was a point where it drizzled rain for a little bit.  There were a lot of umbrellas scattered about, but it finally stopped completely.  The wind was blowing slightly, and it was a little muggy.  The skies were overcast all morning, so it wasn’t too bad.

 

 

The last relay was a piggy back race with the parents.  I’ve never done that before in my life, and I was wearing “slides”.  I just knew I was going to either slip in the  mud, or my ankle was going to turn and I’d topple over and land on Leah.  But we managed to get down and back with no mishaps during the race.  Well, I think she may have been falling off.  I didn’t have a good grip on her back side to help hold herself up.   She was trying very hard not to grip me around my throat, and was hanging on to my shirt.  Too bad I don’t have pics of me “skating” along… lol.  Later, I was feeling the effects of the relay, because my hip started to hurt. 

Here is Leah with some of her classmates.

 

We had lunch together at the school, then we went home and I tried to rest for the remainder of the day, and Leah played Noggin on the computer. All in all, an okay day.

Current Mood: Happy

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 Last Thursday was Parent and Child Time (PACT) at Leah Rose’s school.  It was supposed to be bubbles and kite flying day.  The kite flying had been rescheduled from last month due to rain.  I have never been kite flying in my life… never.  And never really wanted to.  We bought some $1 kites, which is what was requested of us, and I really thought it was going to be a piece of cake to just attach the string and sail it up in the air.   Uhhhh….  no.  Evidently, there is a little more to it than that.  I stood out there in that school yard for an hour and could not get that kite to fly.  All it did was twirl.  I’m standing there in the middle of all these other perky, 20-something moms, and their kites are sailing just as pretty as you please, waaaaayyyy up in the sky.  I have to tell you, it was really a frustrating moment for me.  I can do other things well, and I’m not a stupid person, why in the world couldn’t I get this kite up in the air?    Poor Leah, she just didn’t understand and I think she was a little disgusted with me over it because she wandered off to go play on the playground.  I also screwed up the bubbles.  I brought bubbles, but when I opened them…  I couldn’t find a wand inside it.  UGH!   Leah finally asked her teacher for some bubbles, I think, because she came back later with some.  When I came home that day, I felt like a complete failure.  What was wrong with me that I couldn’t get a silly little kite up in the air?  I was almost in tears, because I just didn’t understand it. 

I had finally given up and given one of the kites I had to another little boy.  I saw one of Leah’s classmates’ mother standing there just nonchalantly holding the string to a Barbie kite.   The Barbie kite didn’t look any different than the one I had, but it did have a very long tail.  I told her I was having troubles, although I’m pretty sure she was aware of it.  She said she just held it up in the air, told her daughter to run with it, and it went straight up and it STAYED there.  She was gracious enough to allow Leah to hold the string for a little while.

 

On Saturday, we took Leah to her school so that she could ride her bicycle.  We took the kites with us because I wanted to try to figure out if I cold fly it.  My friend that went with us became just as frustrated as I was on Thursday.  Those kites just would not fly at all.  They just wanted to twirl instead of sailing on the wind, and there was plenty of wind too.   We finally came to the conclusion that there was something wrong with the way the string was attached to the lines hanging from the center of the kite.  But by that time, we had destroyed the kites we had left over, and we were getting tired and hungry.  We went home, cleaned up, went out to dinner, then stopped at Walmart to see if there were any kites left.  We found Buzz Lightyear and Spiderman kites for $1 each, so we bought 2 buzz lightyears.

On Sunday afternoon, we went back out to the school, bound and determined we were going to get those kites up in the air.  And after doing a little research on the internet, we were more confident about what we were doing.  Saturday, we almost had the idea right…  the “pivot” point of the kite needed to be higher.  After a few false starts, we finally got those kites flying.  YAY!    Once we got them up there, it was kinda relaxin’ just watching it glide along way up almost touching the clouds.

 

Leah was totally disinterested in kite flying on Saturday and Sunday.  She played on the playground, and then of course, on Sunday, a bunch of kids were out there playing, so she enjoyed that more than watching us fly kites.

There probably won’t be any more kite flying adventures this spring, but I’ll be ready next year.     I’m very relieved to know that I’m not really an idiot.  LOL.

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 On 9/16/08, we visited the geneticist, Dr. Blackston, in Macon, GA.  I finally received the summary letter on 4/18/09.  It took us over a year to get the appointment, and then when we got there, we had to wait forever.  The Macon Health Dept. is probably one of the most disorganized places I’ve ever seen.  But I was happy to be able to get in to see the doctor there instead of having to drive to Emory University in Atlanta.  Children’s Medical Services always has to scramble a little because we are ”private insurance”.  I make too much money to be eligible for medicare/medicaid, but of course, with no child support, I can’t hardly afford her medical bills.  Go figure.

Anyway, back to the letter.  He confirmed the original diagnosis of Freeman Sheldon Syndrome… “pursed lips giving the whistling face appearance, curved fingers, trigger thumb, and vertical talus, deep set eyes, protruding chin”.  In describing her hands, he noted “camptodactyly of the fingers and curving of the fifth fingers”.  Her legs and feet he noted “overlapping toes, and the right leg is smaller with the vertical talus”.  He also confirmed the shoulder tightness as ”scapular(?)__smal glenoid”, which had been diagnosed previously with x-rays as glenoid hypoplasia.   He also examined the repaired cleft palate and described as “she has had tight or mask-like facies, small ala nasale, and a high palate”.  He agreed she has the “classic features” of FSS.

Dr. Blackston described her as an “attractive, intelligent young lady”,  “neurologically intact and with good cognition”.  He also emphasized to us that this is a dominantly inherited syndrome (there are no instances of FSS in our family), and there is a 50% risk of transmitting it to her children.  I advised Dr. Blackston during our visit that a new gene had been discovered and gene testing is available by DNA analysis.  The nurse added a handwritten note to the letter that there are currently only 2 labs in  Germany that can conduct the tests.

Dr. Blackston wishes to follow up on a yearly basis, and to do the DNA testing, if possible, recommends she continue with her therapies, and to see the orthopedic specialist.

Nothing really new in the letter.  In fact, I probably knew just as much about it as he did.  He was impressed with my use of the terminology (such as glenoid hypoplasia) and that I was informed on the aspects of the syndrome.  During the exam, he did tell us that he did have several patients with the syndrome.  He referred us to the Parent to Parent of Georgia to find support, but so far, I haven’t had any success with finding anyone in the support group.

We don’t have an appointment with the orthopedic doctor yet.  I’m a little concerned that her right foot is turning in at the toes.

Otherwise, all is well.

 

Current Mood: Happy

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Last night, we started working on a flower garden.

She is very proud of the job she did. And so am I.

 The reason why it’s all in pots is because when it rains, this area gets a little soggy.  But it’s the best spot in the yard to put the birdfeeder.  The view is best from the back porch and from the “sofa” swing a little further to the right.

We had a good time putting it all together, although we did get eat up by the mosquitos.  I used “Cutter”, and for the most part, it worked, but it wore off right at the last little bit.  Probably lasted about 4 or 5 hours.

Current Mood: Happy

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I was finally able to buy a swingset for Leah. She has always loved to slide and swing, but I think she has difficulty on the playground with other kids.

It’s not even finished yet, and her and the bunnies have already taken over.

Here we are, goofing off, while we are waiting for the swing to be finished.

She is so excited that she can swing by herself. I think the swings at school are too high for her to push herself with her feet.

Join the 5 Minutes for Mom Kaboom Team.  Don’t know what it is?  Click here to find out.

 See my other blog for a different post abaout the swing set.

Current Mood: Happy

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 Last night, Leah came up to me and told me she lost another tooth.  This is the 2nd one, and we can’t find it anywhere.  She must be swallowing them.

 We never could get a good pic of it.  But, I did notice that another tooth is coming in where the first one fell out.

Current Mood: Happy

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 She looked so adorable in her pretty red dress this morning, I just had to take a photo of her.

I love it when she smiles so pretty.

 

Then of course, to get the pics I wanted, I had to promise to take pics of her and her pink bunny.

Current Mood: Happy

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