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We are Livin’ Life, Losin’ Sanity, and Lookin’ Forward — training a special needs princess.  Leah Rose was diagnosed with  Freeman  Sheldon Syndrome aka Whistling Face Syndrome, Arthrogryposis, Glenoid Hypoplasia, and a midline cleft in the soft palate (repaired Sep ‘04).

Please be patient while I finish updating this blog.  I am transferring my journals from the original web site.  Some of the posts contain my notes for me to finish.  Feel free to browse, but please do visit again and hopefully I will have all of the posts finished soon. Start here for the First Entry

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Click here to view other Wordless Wednesday participants at 5 Minutes for Mom.

Click here to view other Special Exposure Wednesday participants at 5 Minutes for Special Needs.

Cick here to view my Georgia Angel Wordless Wednesday post, hosted by Wordless Wednesday HQ. 

Current Mood: Happy

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 The other day I took Leah Rose to the Dollar Store to pick up a birthday card and gift bag for one of her friends..  I was very excited to find some workbooks and other things for my summer planning project.  I’m very excited about these books, especially since there were only a $ each.

One of the projects we are going to work on is that she has a small list of chores to do each day, and we can mark them off as she finishes them.

It has been remarked that I’m going to be homeschooling before the summer is over and I know that is what it looks like, but my daughter is very routine-oriented and I think this is going to be the best way for both of us to get through the summer.  The Dollar Store is definitely a must for finding things like this.

Current Mood: Happy

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 There are only 6 days left of preschool. Hooray. I’m trying to get excited about it. Since I’m a telecommuter, I work at home and my hours are somewhat flexible, but I still have to put in a 40 hour week. Leah Rose is a chatterbox and she pretty much demands constant attention.

I’ve had this idea rolling around in my head for the past couple of weeks about what I can do to include both of us in an activity for the day, but then allow myself some time to get my work done too. Today, I decided to start putting my idea on paper, and the more I think about it, the bigger the project becomes. I may have become too ambitous. I’m not really a spur of the moment creative type mom, I need to think about things and plan them. I’m also on a very tight budget, so I’m having to work with items I already have. Granted, Leah Rose has lots of things to play with, but I guess part of the idea is to schedule my time with the activity so that I can gear myself up for it. I don’t play well with children and I feel like I have neglected playing with Leah. Quite frankly, it’s a boring activity for me. So part of this idea is to try to teach myself to play with her, and a purely selfish objective is to try to watch less TV this summer.

Leah Rose is finally at the age where she can follow directions well and has an understanding of what might be accomplished. When she was younger, she was a difficult child to teach things to, at least, from my standpoint. Therapists and teachers don’t seem to have a problem, but with me, she has never been accepting of my trying to teach her or show her something. I’m hoping that if I create a routine similar to what she has experienced the last 2 years in preschool, then it might work for us and, ultimately create some fun memories.

I attended the Kindergarten Resource Informational last week and there were a couple things that caught my attention that really helped spur the idea along. Two things the State of Georgia is implementing for the new Kindergarteners this year is sending home a list of recommended reading during the summer and a list of the 100 words for Kindergarten. We are to record the books we read in a log and turn it in to the Kindergarten teacher when school starts in the Fall. The 100 words is the list of words that the Kindergarteners will be studying during the school year. I like the idea of having a goal to work towards… like turning in a reading list.

My bright idea is to prepare an activity choices box for Leah to choose from for 1 activity for us to complete every day. I’m dividing the activities into categories… cooking, arts & crafts, indoor play activities, ourdoor play activities, workbooks, gameboy/nintendo (I know, I know, but it is a great co0rdination & thinking tool), activities away from home, board games, housecleaning, computer/internet games, and research. I have created quite a list and I’m hoping that we will be able to accomplish all the things on the list. We might have a morning activity and an evening activity, who knows, we’ll just have to see how it works out. I just need to stick to the plan.

I think the one idea that I’m the most excited about is teaching her to write in a daily journal. In Kindergarten, one of the activities that they will start doing is writing a story, or a poem. Even if it is only 1 or 2 sentences. Leah loves to write and draw. So I thought it would be good for us to start a journal recording the date, the weather forecast, our planned activity (such as “We are going to bake cupcakes today”), and our planned lunch meal for the day. These were things that she has been learning in preschool… we are going to, we are learning about, we went to, we learned about… and I think it would be a good idea to incorporate them in the journal. Then at night we could record in the journal what the weather was like, about our activity and maybe include a picture, and whether we had a good day, bad day, or a fun day. I would also like to include something that we learned during the day. Such as the birds we see in the yard or the flowers in our garden, taking pictures, looking them up on the internet, and writing about them. I thought maybe she would like to look up different things she is interested in… like horses.

Now that I’ve pretty much got it all down on paper and I’ve taken photos of most of the activities, all I’ve got to do is start organizing. Okay, so maybe I’m a little excited about the summer. 

Current Mood: Happy

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Current Mood: Happy

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A very LATE Mother’s Day post.  It’s been a crAzzzy week.

The Mother’s Day celebration began on Friday afternoon when Leah Rose came home with this heavy package wrapped in thick heavy paper.  I opened it up, and it was a plant.  I had forgotten that the school sends home a little plant for moms.  This was last year’s …

Here is this year’s plant…

It reads “Mom, Your Love is Planted in My Heart”. 

I couldn’t believe how fast this sprouted.  It’s only been a week.  Maybe I need to get out my little seed packets and the tray to get some flowers started, something I’ve been putting off.

Friday night for dinner was Leah Rose’s choice, and it was Outback.   I had my usual, Victoria’s Filet, after pigging out on a Bloomin’ Onion.  Those are soooo good!

Saturday morning, we got up really early and went out to my mama’s house to work on cleaning up my daddy’s sheds.  This has been an ongoing project, and we are close to getting finished.  But I was only able to work a couple hours because the humidity was getting up as the  morning went by.

Saturday evening, we met my Mama at Longhorn’s Steakhouse, my favorite restaurant, and had a very nice meal.  I tried the new Shrimp & Crab Gratin & Flo’s Filet. It was delicious.  We gave Mama a $50 gift certificiate, for ..  guess?…  Longhorn’s!.  It her favorite restaurant too.

Mama gave me a lovely card…

 AND a rose bush.  YAY!  I’ve been wanting one for a very long time.  Now I’ve got to plant it, hopefully, I can do it this weekend.

The manager from Longhorn’s stopped by our table and presented us with these coupons.  Very nice touch, I thought, to give the moms there a little gift.  I’ll probably be using it this weekend.  LOL.

 Now I’m just realizing there were no mommy and daughter pictures from the evening.  I am going to have to get a good picture of the 3 of us, I just need a photographer.  LOL.

My 21 year old son wasn’t able to join us because he’s a little under the weather, but that’s okay, we’ll see him soon.

I hope all you moms had a wonderful, magical, beautiful Mother’s Day!

Current Mood: Happy

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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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