Sharon Isabella

Uncle Jason steps up to the plate....

2009-04-08T06:36:00.000-07:00

Okay, so here's a little background: Uncle Jason has always doted on and loved all of his nieces and nephews since they were born and is a favorite to all of them. BUT, he has refused adamantally to ever change a diaper, especially a poopie one. Zac is now 16 so this has gone on for many years! It's been the source of lots of laughs for all of us over the years ("Well, Jason could babysit, but only if someone is nearby to change the diapers" or "well, i guess Jason can babysit once they are potty trained" etc etc.) Well, he has been spending LOTS of time with Sharon in the past few weeks and has learned how to work her braces, make food for her, keep her happy, work her carseat, take her to therapies, etc etc. And lo and behold, drumroll...i got a phone call two days ago that UNCLE JASON CHANGED SHARON's POOPIE DIAPER!!!!! I guess now there is nothing he can't do....

party girl

2009-03-23T19:00:00.001-07:00

So, Sharon had her first big birthday bash with her classmates and friends. We held it at one of those jump/bounce/moonwalk type places. She was pretty overwhelmed at first, and i think she couldn't figure out why her friends from school were there (like maybe she thinks they all just live in the classroom), but once RJ got her out there playing she had a ball and really enjoyed herself.
note: i stuck a picture in there with me in it since people have been asking to see pictures of me pregnant. there you go. :)
Oh, and Aunt Marj, the sliding picture will also show you dear little Mary Helen going up the steps for a turn!
Cousin Rose again outdid herself with a Mickey Mouse cake for the occasion and it was just so fun to see Sharon having so much fun! We're really trying to help her learn to socialize better with kids her age and so events like this are a necessity to take away some of her fear and timidness. We were so proud of her for keeping it together while everyone sang "Happy Birthday" and she was even able to blow out the candles! (those of you who see her frequently know that she usually cowers in times like that)...i think in the picture it looks like RJ is going to cut the cake with his shoe or maybe hit someone with it? but really he was just getting his shoes back on after the bouncing fun...and you can see Sharon's overwhelmed face, but a big step in the right direction that she held it together!
The next day she started her soccer league and had a ball then too (no pun intended). She is on the "Tigers" and RJ is coach so that will be fun for both of them! We'll get some pictures up when i get a chance to get some taken...
She has been getting to spend a lot of time with Uncle Jason recently and he is quickly becoming one of her very favorite people! Today they played soccer, used her swing, climbed on our rock wall...no wonder she loves him!

the big 4 year old!!!

2009-03-13T18:11:00.001-07:00

HAPPY BIRTHDAY SHARON ISABELLA!!!
This was definitely her best birthday yet. I talked it up all week with her and her class celebrated with her on Wednesday to ease her into it. Rj and I carry on my family's tradition of "picking out of the bag" for birthdays (instead of wrapping presents, they all go unwrapped into a bag and the birthday boy/girl reaches in blindly to pick presents throughout the day). It's very fun and this is the first year that Sharon was able to really get into it. We would tell her "okay, it's time for the birthday bag" and she'd come as fast as she could to get to that bag! So fun! She loved her birthday dinner (pizza) and ice cream cake and was even excited to blow out the candles (in years past she has been too scared to deal with any of it!) She went to the science center today with her buddy Jack and got to pet some critters and see the monkeys that she loves (after a neurology appointment...guess it wouldn't be a complete day without at least one doctor appointment????)
Grandpa Baer came up from Florida so she has had a ball playing with him, barely letting him out of her sight for a minute!
The family came over the celebrate with cake and we got a nice group shot of that, along with a "picking out of the bag shot". I wasn't quick enough to get a good picture of her with the cake, but had to put one up since the cake was priceless. Rose, who is our resident cake girl, was ill today so Jason took charge and decorated the ice cream cake...if you can see, it actually says "Sharon" on there somewhere...

someday i'll have pictures again!!

2009-03-11T16:55:00.000-07:00

My camera continues to be finicky...i'll get a new one someday!
In the meantime, i just noticed that my last post was about our "blizzard"....guess that was pretty much it for us. We've been enjoying 70-80 degree days recently and Sharon loves to be "out". Thankfully she hasn't figured out how to open the storm door or she'd be trying to go out all day long! She loves playing soccer with daddy, fetch with Dina, riding her Jeep, or going up to visit Namom and Pop-Pop (Dina likes to sneak up there for visits too....). We are due for colder weather for the next week, but this sure has been nice!
I promise i'll get pictures up for Sharon's birthday....

2009-03-04T15:19:00.000-08:00

Hello All! Sorry it's been awhile! Sharon says hello to you all :) She's getting to be such a big girl, hard to believe that she is going to be 4 in just a few days....
she got to enjoy some snow this week, we got about 6 inches (a complete blizzard by NC standards!) Namon had her our tromping through the snow in her snow boots. Very fun, but she definitely doesn't like the cold...so we're ready for it to warm up!
We enrolled her in a brand new special needs soccer program for this spring. We can't wait! It won't start for a few weeks but when it does we'll post pictures. It's going to be very fun and will be something that Sharon does with her daddy and cousin Rose (who has signed on to be her "buddy" on the field).
I've had to do some comment-management here in an attempt to stop some strange ads etc that have been showing up. So, none of you will be able to post for a while, sorry!!!! (or at least, you shouldn't be able to post if i did it right....someone go ahead and try to post and let me know if it works or not:)

One more challenge handled with dignity

2009-02-14T15:44:00.000-08:00

So, our girl continues to rise above hurdles. She was admitted to the EMU (Epilepsy Monitoring Unit) this week to see if we could get a handle on her seizures and see if the meds are working or not. She had 25 wire leads attached to her head, which were attached to a chord which plugged into the wall....for three days. Imagine being a toddler and being so confined. She was amazing of course. Every doctor and nurse who came into the room was greeted with a "hi!", high five, and a "Bye!" as they left the room. It was very hard for her to be so restrained, but she really managed it well. it was also very difficult (for both of us!) to sleep in bright lights (so that she could be seen throughout the night). We were videotaped the entire time. Luckily we had some great visitors!!!! Uncle Jason and Namon get kudos for coming multiple times to visit, and friends Jack, and Daniel and Kayla were wonderful surprises for Sharon to brighten up her time there!!
The EEGS will be reviewed and we won't get a final report for many weeks, but overall things are looking good. She seems to be doing well under the medication she is on now so that is a relief! This will be an ongoing journey throughout her life and we'll just do our part to try to stay on top of what she needs.
Yesterday when they "let her go" from all the wires she was just beaming and so happy! She walked around and was just so happy. And she and I slept like ROCKS in our home last night :)

pool girl

2009-02-08T16:09:00.000-08:00

So we've now started private swimming lessons. As you may know, Sharon has been taking group swim lessons since she was a baby and has loved them. I had hoped she would be able to move out of the baby group but the next level up is for 2-4 year olds and requires that the kids be able to get in and out of the pool by themselves and sit by themselves during the lesson. Since that isn't an option for Sharon, i've enrolled her in private sessions. It's the same instructor we've always had and we really like him and he has a huge soft spot for Sharon. She had her first private last week and just beamed the entire time. I can't wait to see how she does over the next weeks...it's so nice to see her thoroughly enjoying herself during the session!
We'll be doing some intensive seizure monitoring later this week at the hospital and i'll give you updates on that later...

Hooray!!!

2009-02-02T13:43:00.000-08:00

Well, we sure had a fun Superbowl Sunday :) This little Baer family is proud to be part of Steeler Nation (I held out on RJ for the first few years, but i've decided that it's much more fun to have this team to root for as a family and i was right!!!)
We also celebrated Uncle Jason's birthday in the midst of football (Sharon helped blow out the candles...she's finally getting that birthday cakes and candles can be fun!). It was a gorgeous day and we spent it just about entirely outside. So nice! now we'll batten down the hatches for the next few weeks that are sure to bring the worst of our winter. Sharon does not handle cold well, she seems unable to regulate her body temperature for extremes (cold or hot) so we'll be staying in until it warms up again. We're still figuring out the seizures. Don't have them under control yet and will have more testing sometime soon. Of course we'll keep you posted!
Hope you all are enjoying the start of February, and HAPPY BIRTHDAY UNCLE DEESSA (sharon's variation)

getting ready...

2009-01-31T06:14:00.001-08:00

communication

2009-01-26T16:13:00.000-08:00

So, Sharon's speech therapist asked me to write up a list of the words and phrases she uses regularly so that we can keep it updated and pass it on to future therapists. I thought, "okay, this will be easy to do!"...and boy, was i amazed at how much writing i did! I got to 150 words and stopped for lack of paper space. There are a handful of phrases in there as well.
This wound up being a very good exercise for me. I spend a lot of time worrying about Sharon's speech delays and wondering what the future holds for someone who is very "with it" as Great Gram would say, but can't get her point across because of her language limitations. So, writing this list and seeing how long it is and how far she has come since the summer was very nice. This list of words is of words she uses on her own (she can repeat just about anything you say, but that is VERY different than coming up with it on her own)...knowing that she has probably over 200 words that she can initiate on her own is wonderful! We are definitely seeing most of these results because of the hyperbaric treatment and will figure out ways to continue that treatment.
It's also time to register for the next school year. So, it's time to move her on. Next year she will advance with her class to the 3 year old room. She'll go three days a week instead of 2 and i know she'll love that! I'm sure she'll love the new classroom too. The teachers are very good and she'll be in good hands. We'll just take each school year as it comes...

northern travels

2009-01-20T18:15:00.000-08:00

So, Sharon and I headed to PA last week for a little jaunt. My friend Angela had a new baby 2 weeks ago to be met, cousin Jen was in Malvern with new baby Alexandra to be met, and...here's the one that gets me...one of "my peoples" who i used to BABYSIT was having a baby shower this weekend!!!! YIKES! See the picture of the two of us pregnant together. Talk about surreal...
The second shot is with us "Pierce girls" and our kids. Sharon and I spent a day at the Line Road house and were well cared for! Sharon was having a rough day and Jen somehow managed to cook for us while taking care of a newborn and her wonderful Lydia. Of course Lorrie was a huge help and Uncle Fred and his bed are a great babysitter for a newborn! I just couldn't believe Jen's energy and capability! I hope for as much when i've got two!! We even got to see cousin Greg which was a big treat. Sharon and Lydia had a ball together. The picture of them at the computer doesn't do justice to the energy level surrounding them...just lots of fun to watch!!! That Lydia is one unique gal...she truly just brightens a room when she enters it!!!!
During the trip Sharon and i stayed with Angela so that Sharon and Molly could play. They did have fun and meeting the baby was wonderful! Angela always takes great care of us and makes us feel so welcome. (and of course i love the time we get to spend together after kids are in bed!!) Sharon did really have a rough trip overall though. Proof that traveling is no longer as easy as it was and that we're really going to have to limit what we do. It takes her awhile to adjust to new places and faces and is just very stressful for her (and me!!!) It takes some time for her to adjust to sleeping in a new place which is absolutely essential to keeping her healthy and seizure free. I'm very glad we took the trip, but that will it for awhile. And i didn't get the pictures that i wanted since i spent most of my time managing Sharon's emotions...hopefully other people took pictures and can send them to me!!! My good friend Rose met us at the Philly airport to help me get to the plane. Thank God she was willing to do that because I was wiped out by then and the extra set of hands was a huge help! Especially since we were delayed...

When we left the Pierce home Lorrie asked Fred if he had any words of wisdom for me...and he summed up the trip with his spot-on insight: "Jaye, Hang in there"!
So, now we are home...to cold and snow. but Sharon is thrilled and back to her regular happy self. Whew! She's an amazing kid...i think folks will just have to come here to really see it! I hope you all stay warm and entertained during this cold spell and HURRAH for Inauguration day!!!

Football weekend

2009-01-11T17:33:00.000-08:00

So, it was a fun weekend even though the Panthers game was really hard to watch! The Messicks had a great tailgating party at their house before the game which was loads of fun. I'm sure their neighbors think they are crazy, but we had a ball with a fire in the front yard (Sharon is roasting a marshmallow..and some leaves that got stuck to it in the process), cornhole, lawn bowling, tons of great food, etc etc.
Today RJ was beside himself gearing up for the Steelers while Sharon enjoyed her first outside ride on her new Jeep. She's getting quite good at it! Soon she'll remember that it's important to steer at the same time that she is pushing the gas...

back home...again!

2009-01-04T16:37:00.000-08:00

So, we're really back now. hard to believe that we had Christmas somewhere in the midst of the past 2 weeks, but that's what we knew to expect, so....
Sharon is up and walking. not quite 100% and we're still nervous about her falling (we don't want her to fall on her hips for a few weeks...easier said than done with our girl!). She loved doing the hyperbaric diving with Daddy, really handled it wonderfully and was excited each and every time (twice a day!!). her speech picked up almost instantly and we're hoping to see continued results there. She's also using her right arm a lot more, just like last time. Very neat treatment! Just wish it were closer and a little less expensive! We'll continue to get her down for treatment whenever we possibly can...not sure what that means at this point!
She'll go back to school one morning this week and i haven't decided if i'm comfortable leaving her there or not (it's hard for the teachers to constantly make sure Sharon doesn't fall, that's a lot to ask of them so i may stick around!)
In the meantime, we're all happy to be back home and to have the surgery well behind us. Whew. Oh, we've also noticed that she is showing no seizure activity at night since we started the hyperbaric treatment so that is a definite bonus! Hope that lasts and we don't have to keep increasing meds!
Thanks for keeping up with us...we hope you all had a much more relaxing holiday than we did! Here's to 2009 and a surgery free year for our girl!!!!!

Merry Merry!

2008-12-26T04:56:00.000-08:00

yes, the weather was gorgeous and warm on Christmas day!!!

Sharon was able to enjoy Christmas for the most part, which was great! she did really well in the morning and was so excited about her stocking and the presents under the tree. As the day wore on she became (understandably!) more tired you could tell she was hurting but she was a trooper nonetheless. She is also very very frustrated by the fact that she can't just walk and play like she usually does. She has been putting weight on her legs and we are very hopeful that she will be walking again soon because she wants to so badly!
We got some great shots with Great Gram and the whole NC Pierce clan. Gram was devouring candy while we were there...multiple pieces at once, always with one in her mouth, one open in hand, and another being opened simultaneously...she was in heaven! Grandma Baer is here for the holiday and spent the day with us at the Messicks where we had a great dinner of Mom's tacos...yum!
We leave today to go back to Charlotte for more hyperbaric treatments. RJ's office is closed so he's got time to do some dives with her (i cannot since i am pregnant) so we're going to take advantage of it. The dives should definitely help her healing from the surgery and of course we're also hoping it will continue to help with her speech...

WHEW....

2008-12-23T05:47:00.000-08:00

Okay, so we are home!
Yesterday was quite a day, but it really went as well as any surgery/hospital visit could. We pulled up the hospital at 6:19am and pulled away from it last night at 6:23pm!
Last year was a nightmare in every way with nurses and hospital staff making our stay truly miserable. This year was the complete opposite! I think it was a combination of different nurses etc, and the fact that we were completely on top of what Sharon needed and wouldn't take "no" for an answer.
They got her in very quickly for surgery (same wonderful doctor as last year...the surgery went very well, no glitches at all. you can see what was taken from her bones...) and the anesthesiologist (who i immediately dubbed "Hubba Hubba" for his looks!) listened to our concerns about Sharon's need to have one of us with her as soon as she started to wake up and he came to get me as soon as she was in recovery which made things MUCH smoother for all of us. The recovery nurses listened to me and did whatever i asked which was so nice! They believed me when i said Sharon was upset and crying because there was too much noise and stimulation in the recovery room and so worked very quickly to send us to a private room where we could just let her relax. The nurses on that floor absolutely let us be alone in the room (rather than coming in every 30 minutes to freak Sharon out again), coming in only to give meds and the occasional vital check. The entire staff was completely on board with our hopes to go home last night (after all of them saw how upset she was in recovery, they totally believed us that she would do much better in her own home no matter how much pain she was in!). They all worked together and did what they could to make that happen. Our hope was to leave around 5:30 when she got a bunch of pain meds given, and we were pretty close to that time so it was wonderful.
Through all of this, Sharon was her usual tough self! She certainly didn't like recovery, but once we got her settled in the private room with the lights dimmed movies/TV available, she really did settle down. She cried only when she was in pain and did a great job of letting us know when she needed meds. She ate like a champ and never let go of her newest baby (the picture is a bit blurry, taken on a phone). her dearest friend Jack gave her this baby for Christmas and it has not left her arms since we handed it to her after surgery. When we told her we were going home she lit up and said "GO!!!". The hour-plus car ride was tough on her hips, but she was a trooper and was almost her old self as soon as she got home and sat on her couch. She even did really well last night. RJ played nurse and made sure he brought her meds in every 4 hours but she really did sleep well with just a couple of wakings due to pain.
Today i'll sponge bath her and get her cleaned up and we'll see how she does.
We are so very glad this is over and that it looks like she'll be in good shape to enjoy Christmas!!!

4pm

2008-12-22T13:37:00.000-08:00

Hello - this is Jacks again.
It looks like the Baers will head home this evening - this is what they all wanted - for Sharon (and Jaye and RJ) to be in their own beds tonight. Sharon is groggy but not crying so hopefully this will go smoothly.

Update

2008-12-22T09:06:00.000-08:00

This is Jacks again - it is around Noon. Jaye just sent word that they are in a room (not in the ward like they thought they would be - YAY!) and Sharon is crying but doing much better than last year. They are watching tv and biding their time.

Surgery Went well!

2008-12-22T05:41:00.000-08:00

Hello this is Aunt Jacks. It is 8:40 am and I just got word that the surgery went well! Great news!!!!! I will post more information as I get it - keep up the prayers!!!!!!

impending surgery

2008-12-17T17:17:00.000-08:00

So, with all the fun winter and holiday posts, i do have to let you all know that Sharon will go in for surgery on Monday. Remember this time last year? she had that massive hip surgery and was in the cast and went through a LOT....well, now it's time to take out the screws and plates that were put in during that surgery. There are 5 screws and one plate on each hip. They will go in through the same incisions they used last year. It will take no more than 2 hours if all goes well. They'll pull out all of the hardware, stitch her back up and then we'll see how she does. The HOPE is that the recovery time will be minimal but we just won't know until Sharon lets us know! Of course the biggest worry for Rj and I is the surgery itself and the anesthesia...that's never easy to sit through. We also are really hoping that Sharon comes out of it all very well and we are able to manage her pain that day enough so that we can come home Monday night and sleep at home instead of in the hospital (which was an absolute NIGHTMARE last year..) The doctor is very much on board with this plan which is a big help!
I'll let you know more as it gets closer (we won't even know what time her surgery is until later this weekend when it gets scheduled) and someone will put updates on this blog during/after surgery.
In the meantime, she is really enjoying this season!!! She loves all things Christmas and it's wonderful!

A lesson in receiving

2008-12-11T16:36:00.000-08:00

So, we may have seen this picture before, but it bears repeat viewing! This is Sharon with a dear man named Tom who gives time each week to come and work with Sharon with his healing hands. Specifically he does myofascial release on her right side. Sharon adores him! Unlike her therapists, he doesn't make her "do" anything she doesn't want to. She just gets to relax while he works on her arm and back. He will accept nothing in return, which is a constant struggle for me because i feel the need to repay him somehow. But he is a quiet and gentle soul with a true gift of healing, who tells me "your gratitude is more than enough". And i have to believe that. So, while he is helping Sharon immensely, he is also teaching me to recieve...
Thank you Tom, from the bottom of our hearts! And if all who read this could just send up a special prayer for Tom, i'd feel like he is getting something in return :)

Happy Birthday Pop Pop!

2008-12-09T05:52:00.000-08:00

So Pop Pop had a Panther's birthday celebration and they were kind enough to win their big game for him also! Sharon enjoyed the cake and some good rough-housing with Anna, Daddy, and Pop Pop afterwards.
We've been trying to get decorated for Christmas but aren't quite there yet...we now have our tree and it's up so that's a start! Sharon is really loving the season this year which is wonderful! She's excited and seems to really get it. It really does make it that much more fun!
Hope you all are well and staying warm!

Pie Noon and Other Thanksgiving Fun

2008-11-28T16:29:00.000-08:00

We hope you all had a wonderful Thanksgiving and lots of yummy food!
Our fun tradition of Pie Noon continued this year with our biggest group of relatives yet! I think the total count was 23 people...in our house! Luckily, the weather was gorgeous so after the many many pies were consumed, folks went outside to play football and then a little basketball. it was such a great time! 4 of the 6 Dutilly cousins now live here with respective spouses and children so that filled out our numbers quite a bit! Martin's brother and his family were in town and joined the fun as well. The first photo is just a small shot of Pie Noon and then i had to throw in a shot of the football game (is Dan about to tackle Anna? what a bully! hee hee)...and one of those of us who opted not to play :) (that one's for you Aunt marj!) Sharon stayed out of the fray for this part of the day and hung out with Namom.
Sharon enjoyed the pies and then we had dinner at my parents' house and she ate her entire plate of food! Saying "yummmy" all the while...and then had MORE pie. Yay Sharon!
Today we did some shopping (believe it or not, i've come to love it every year...i used to laugh at Black Friday shoppers, but now i love it for some reason...). And then RJ spent a long afternoon and evening chopping and splitting wood (the sole way we heat our house). he's been long looking forward to when Sharon is old enough to lend a hand with this chore. He gets very sore from constantly leaning over to pick up pieces of wood and so Sharon was able to help him today for the first time. she was VERY proud of herself and took her job very seriously. in this shot she is handing him wood but it's a bit of a blur. Maybe by next year she'll be able to help even more!

dancing!!!

2008-11-24T04:41:00.000-08:00

So, Sharon had her first dance recital this Saturday!!! Grandpa Baer drove all the way from Florida to come and watch and boy did Sharon enjoy having him as a playmate! he would try to sit for a moment and Sharon would come and grab him to come play again...very fun.
Anyway, back to the recital. I expected Sharon to freeze up in front of the audience and in the big performance space and she did :) Her volunteer was great and made sure she had fun, but anytime Sharon would look out and hear clapping or see the people she would just stop whatever she was doing. Very cute! She did heartily participate in the jumping part of the dance though, with a huge smile on!
While i wish that she smiled in her picture with Grandpa Baer, that expression pretty much captures her overwhelmed feeling for the whole ordeal :)

In other news, we've switched seizure meds again. We have loved the one she's been on that is temporary but have known that it won't last. So we're in the process of getting her off her first med and onto this next one. It's always a rough time when meds are switched: seizures can occur more often in this time and also the side affects can come through (with this new one, Sharon gets pretty dizzy and loopy after taking it so we have to watch her really closely when she's up and around). Of course our hope is that this new one will do the trick and not have negative side effects so that we don't have to change again....time will tell!
Thanks!

Sharon is going to be a big sister!!!

2008-11-20T05:28:00.001-08:00

So, it's time to start spreading the news....Sharon is going to be a big sister in June 2009! She of course doesn't know this yet...we'll wait quite a few more months before trying to explain to her the strange concept of "baby in mommy's belly, your world will never be the same, share all your toys, your parents, etc etc"...She's going to be VERY excited though. She absolutely LOVES babies and is going to be a fantastic big sister!
So, people have questions and here are some brief answers to the ones i get asked most often:
No, we will NOT be finding out if it's brother or a sister until he/she is born.
Yes, this was planned and we are very happy (we really wanted to wait long enough to give Sharon a chance to be mobile and have a chance to really be the "big sister" so we think the timing is wonderful)
Yes, i am sick as can be and do NOT like being pregnant at all. If you knew me with Sharon, i was very sick for 7 months so we'll see how this one goes but so far it's not looking good...RJ is having to pull triple duty by working, cooking, and basically taking care of things while i avoid things food-related...
Yes, we will be having a planned c-section for obvious reasons.
YAY! Should be very fun and i'm just praying that i get a relief from being so sick so that i can really enjoy this time with Sharon before it gets more crowded :)

Theatre buff?

2008-11-10T17:53:00.000-08:00

So, Zac, my mom, and myself just completed a run of "The Sound of Music" (my mom and i were nuns while Zac was Friedrich, one of the VonTrapp children). It was a big production and i hoped that Sharon might be able to tolerate a little bit of a matinee just so she could see Zac on stage and maybe be able to watch me as a dancer in the party scene (picking out my mom and I among the nuns was nearly impossible!). RJ brought her in hopes of making it to intermission before having to leave (dark theatres, strange people, costumes, noise, all are things that scare Sharon quite a bit). Well, i just about fell down when i walked down the aisle (singing in latin as a good nun would) and saw her there after intermission! She actually sat through the entire (very long!!) show!! Rj said that EVERY time Zac came on stage she'd say "Daddy, daddy, ZAC!!!" I'm so proud of my little theatre girl!!!! (and of her daddy for sitting through a play he hopes never to have to watch again! Ah well, you win some, you lose some!)

Happy Halloween!

2008-11-02T05:48:00.001-08:00

So, this year's theme was the Wizard of Oz...
We had Glinda, the Wicked Witch, the Lion, Toto (in the basket!), Dorothy (oh yes, that's RJ...check out the ruby slippers!), and in the background we had uncle Jason as the Twister (as only he can pull off: dressed in a long robe, doing the twist!)
Rose's friend came along as the cat.
Sharon really enjoyed herself this year and has been carrying around her bucket of candy since Friday night. Luckily she's more interested in carrying it than eating the candy :)

halloween and birthday fun

2008-10-31T07:34:00.000-07:00

So, there of course will be more pix after tonight and trick or treating! But for now, Sharon has had fun with the preparation. She and Anna worked hard on pumpkin carving...well, Anna worked hard. Sharon had fun scooping the guts from the bowl back into the pumpkin...
Anna's birthday was yesterday and Rose outdid herself with another awesome cake. Sharon helped herself to the foot.
Happy trick or treating (or whatever celebrating you do!)!

fun week(s)

2008-10-17T18:39:00.001-07:00

So, sorry it's been a little while. I'm having some fun "me" time with two shows (in one, teching for another) so time is limited! I'm so lucky that RJ is supportive of my hobbies that keep me sane!
I had to get a couple of pix of here that have been taken in the past days/weeks. Sharon loves to help with Flare, so the first is her helping me groom before Sharon rides (in fact, i can't recall, but i think Flare may actuall have the "saddle" on already? It's the special one we have for Sharon that is basically a glorified pad so that Sharon can still feel Flare's body with her legs).
The next is Sharon with Jack. Jack is the son of Whitney who was Sharon's first PT (when she was 5 weeks old!) and who has just recently quit her job to stay home with Jack and so now Sharon and I both have friends to play with regularly and we love it!! Jack is only 8 months old but they love each other and really enjoy their time together!
And the next is Sharon doing a plie in ballet! As you can see, she likes to put her whole body into the moves...we're working on getting the butt to stay still but it's darn funny in the meantime!
And finally, i had to get a picture up of Sharon with family friend Jim Donnelly. He is actually the very first contributer (other than Jax) to the blog. he wrote a poem for Sharon the minute her heard that she was in trouble at birth(archives, March 2005). I've always considered him a strong Sharon prayer warrior and supporter and am sorry that i haven't posted a picture of him sooner!!!!

We've been having a nice couple of weeks. The weather has been hot and wonderful and we've spent every minute outside. Sharon is not going to be happy being inside this winter but she'll have to adjust...
I had to share a little story that happened today that just tickled me. Sharon and I went to visit Great Gram (who is now full time in a wheelchair and a lot more tired than she ever has been, but still going strong!). Sharon tends to get nervous when a lot of Gram's fellow residents try to get too close to her (which happens frequently!) but loves hanging out with Gram and just finds her very humorous. Well, today the residents were gathered in the main hall for karaoke and Sharon wound up being the hit of the show. She made her way to the center of the room and just danced her heart out song after song. Sometimes she would get nervous by reaching hands and would make her way back to me, but she was never able to stay still for long. Her body would literally start moving to the beat even if she didn't want it to! It was so funny to watch and see how much she just FEELS and loves the music!! And as timid as she often seems around strangers, she most definitely got some performing genes from me and i couldn't be happier about that! It will be so good for her to have something that gets her past the timidness!

We started a new seizure med over the weekend (on top of the old one) and we are FINALLY seeing some results. Sharon has actually slept for HOURS on end for 2-3 nights this week. It's truly amazing. RJ and I have realized just how much sleep other children get and how soundly they sleep. We've never seen that in Sharon until now and it's truly amazing. I had gotten so used to having a child that just never slept that it's going to take some adjustment for us to realize that we don't have to tiptoe, that we can bump her at night and she'll still sleep...all those things that other parents are used to! So, say a prayer that this continues to go well. It's only been a couple of days and this isn't a long-term med so we don't know just how long we'll see it's benefits...
Thanks for checking in!!

fall fun

2008-10-05T15:58:00.000-07:00

So, here's our girl enjoying a home-made caramel apple from the Messick cousins, and here's a shot of her riding by herself. She just loves it. We don't get to do it as often as we'd like because it takes 3 adults, but when it happens it's great! Otherwise, she gets to ride with me twice a week so that's great too! As long as she's up on Flare and getting that great stretch and movement, we're thrilled!
She's still dancing once a week and loving it. her helpers tell us that "she has very definite ideas about the way she thinks dance should be and doesn't always want to do what the rest of the class is doing"! yeah, that's my girl! She really just wants to tap rather than ballet!
She is loving school. I'm still working out therapies (we still don't have PT! Gotta love the NC school system). I'm still trying to work out the schedule to best suit her but we'll get there!
No news on the seizure front. I still think she is having them at night and we're now at the max dose of her current meds so we'll see where we go from here (a new med more than likely). It all takes LOTS of time so there are no quick answers. THANKFULLY she is not showing too many adverse reactions to the meds that she is on. They have the potential to make her very groggy and sluggish but other than needing to really slow down around lunchtime and have some good chill-time, she's doing okay.
Hey, any of you folks i saw on our Malvern trip, could you please send me pictures since i didn't have my camera? Thanks!

lots to catch up on

2008-09-23T18:00:00.001-07:00

Okay, i won't take the time to post pictures right now (mostly because i haven't had my camera recently and have to wait for others to e-mail me pix!).
I'll try to breeze through the updates as quickly as possible.
First, Uncle Fred: he is recovering miraculously! Whew! Totally amazing that he pulled through last week. Sharon and I had a trip planned for PA for a long weekend and i was able to see Fred in person. I wasn't there for his critical time and so just was able to have very pleasant visits with him! Sharon wasn't able to see him at all (he is in isolation at the hospital)but luckily we had help from Rachel and Lorrie and Greg and Angela who watched her at various times so that i could visit with him. I actually had some of the best conversations I've had with him since the accident!
And the trip was wonderful. Sharon was truly amazing (more on that in a minute) and we had a great time. Sharon got to visit with the (Carolyn) Brown kids and Jennifer's Lydia again and it was awesome! They had all just seen each other in the past month and so they just played and had a ball at Lorrie and Fred's house (which is pure heaven for kids...!! the yard, the ramps, the toys!). Carolyn's little Gabe played with Sharon for about 40 minutes while other kids were doing things she couldn't keep up with and it just warmed my heart to watch! They are almost exactly the same age and really enjoyed each other. And little Lydia followed Sharon all over the place! It was so good to watch Sharon holding her own with typical kids and thoroughly enjoying herself rather than being timid.
And we stayed with my best friend Angela and so Sharon got to visit for 4 days with Molly. They danced and sang and played for hours on end! Such a great trip for Sharon (and me of course!)
And a well deserved trip for her as well. I'll have to backtrack and update you on the seizure status. As you know, the initial EEG showed seizure activity and so Sharon was immediately put on a seizure medication. As we gradually increased the meds, we began to notice that her sleeping actually got significantly worse. It was a very scary time as the meds seemed to make things worse instead of better. I asked for a sleep study and got one within days. Simultaneously, the meds seemed to begin really working and she was sleeping better than she had in a long time. Sharon and I stayed overnight at the hospital last Tuesday. She was again hooked up to EEG leads. These ones were seriously glued to her head and the glue is STILL there. She was amazing and was able to sleep as well as she normally does. They woke her up at 6:00 am (WAY too early for her!) and sent us on our way. That was the roughest part! That was the day we flew to PA, which is why she gets the trooper award! It takes the doctors a few days to read the sleep study and get results to us so our neuro told us to go ahead with the trip and just make sure Sharon was getting enough sleep.
While on the trip i got a phone call that Sharon did have seizures during the sleep study (the obvious hope was that the medication would have stopped the seizures by the time the sleep study happened). So once again they increased the medication.
The bottom line(s) is this: seizures are very difficult to control. When they have been happening as frequently as Sharon's have, they are even harder to get under control. it often takes many weeks or months and often medication changes etc. I do trust our neuro and feel that she listens to us and is very available to us, so that is a relief. I think i talk to her nurse at least twice a week now! We don't know how long it is going to take to get these under control. For those who have medical backgrounds, they are sub clinical, partial seizures in her frontal lobes (both of them). What this means to most of us is that we have no idea what they look like. She doesn't convulse or shake like people do on TV. It makes it impossible for us to know if she is having them or not. Right now all we have to go on is her sleeping patterns and that's not easy since she is not a good sleeper (a chicken and the egg situation: is she a restless sleeper because of seizures, or has her restless sleeping brought on the seizures?...we will probably never know).
So we will be on this roller coaster for a very long time. We hope and pray that the seizures respond to the meds NOW and STOP. We don't want to subject her to continual EEGS and sleep studies so we hope that we will be able to clearly see that they have stopped soon.
As for Sharon, she is just going about her happy life! She willingly takes her medicine twice a day (such a big girl!) and is loving school and life! She's amazing. We hope that she won't know the affects of this new diagnosis. We will have to be very protective of her sleep which may hinder some travel plans (no jet lag, and no matter where we are we need to be sure she can sleep well) but other than that, life goes on! Believe it or not i'm still fighting the therapist battle, but really don't care too much about it. Sharon's in a great place and since she's getting her speech therapy that's all i really care about right now! We definitely have learned to pick our battles! One wise mother of a child with CP said "this is a very long marathon, not a sprint, so don't burn out too soon!"
I'm very glad you're cheering us on! Thanks for checking in and for your concern! hopefully i'll have some great pictures up soon of our trip!!!

Prayers for Uncle Fred

2008-09-15T16:43:00.000-07:00

Please pray for (Great) Uncle Fred. He is very seriously ill right now and it has happened very suddenly. His daughter Carolyn is doing a great job of keeping everyone updated on her blog, so i will send you there for information rather than trying to convey it here. www.ourlittlebrownlife.blogspot.com

Nina's wedding and Aunt Kim

2008-09-15T16:34:00.000-07:00

This weekend, our Charlotte angels, Nina and Randy (whose house we stayed in while Sharon underwent the hyperbaric treatment) got married. it was such a wonderful and true wedding!!! What an honor to be included!
AUnt Kim arranged a business trip in Charlotte simultaneously so that we could visit with her! It was so nice!!! She and RJ took Sharon on a paddle boat and we had fun just visiting (RJ got to celebrate his MBA completion with his aunt one night after Sharon went to bed so that was very nice for him!!!...he had a bottle of wine he had been aging for 7 years...)

Happy Birthday Aunt Jax!

2008-09-12T17:57:00.000-07:00

Today we celebrated Aunt Jax's b-day! Sharon ate more at dinner and dessert than she ever has in one sitting! yay for birthday fun!
How is it that Sharon is the center of attention in this picture even though it is Jacqueline's birthday???

And while i have struggled to find good pix of Sharon and her second cousin Gemma, i have come up empty handed! Catherine and Aunt Lorrie and little Gemma came last weekend for a visit and we had a wonderful time! I so wish i had some better pictures to post...Catherine has some good ones on her blog though :)

Beautiful ballerina...and cousin video footage

2008-09-08T17:45:00.000-07:00

So, our girl started ballet this Saturday! I have called different dance studios for over a year now trying to set up a dance for little ones with special needs and none would agree to do it. Finally, a local college student made it her senior project and we get to reap the benefits. The Greensboro Ballet has started a program called "Dancing Above the Barre" and I signed Sharon up immediately.
It will be once a week until the holidays with a recital at the end :)
There are three physical therapists who have volunteered to be at the classes to offer help and guidance, and a group of college girls have committed themselves to being at every class so that each dancer will have a volunteer helping just them. Really a neat set up!
So, we got Sharon her required attire and boy, did she just BEAM once she had it one. She was walking on air. It was really something to see. And then had to go find a purse to finish off the look. (she is not normally into dressing up OR accessorizing!). The top picture is at home and just captures quintessential Sharon with that look.
She loved the class (the fact that Whitney is one of the PTs there was a big help for her nervousness) and apparently had her own ideas about how dancing should look (we weren't allowed to watch, but were told that she was pretty clear about how she wanted to dance, mostly tap (thanks to the movie "Happy Feet")
She learned plie in 1,2, 3 position. Pretty impressive for one class!

As an addendum (for the Fred Pierce relatives!), Jason got some great footage of the Heil, Brown, John visit a couple of weeks ago. It takes place at Jacqueline's home. Feel free to check it out...my favorite part might be Gabe going at that pinata....CHARGE!!!!
http://www.vimeo.com/1687248

First Day of School

2008-09-03T18:36:00.000-07:00

So here's Sharon on her first day of school. She was completely distracted by a little girl coming up the sidewalk and I just couldn't get her to look at me and smile, so here you go! Check out the reflection to see her shiny shoes. She picked them out by herself (RJ and I had another pair we liked that we tried to get her to pick, but she was very sure!). She says "Parkly" (Sparkly) when she has them on and gets lots of compliments :)
She LOVED going back to school. Same teachers, same classroom, so that was really nice for her. She was very shy at first but really came around and didn't want to leave when it was time. I'm excited for this school year for her,I think she is very ready for it and will truly enjoy herself! We have no therapists yet and I get to be the mother that no case manager wants to deal with because of how inept this school system is, but that's the "behind the scenes" stuff that i get to have fun (not) with. If we don't have therapists by next week, i'll just go ahead and get private ones. So frustrating to have to wait on people for stuff that I could easily take care of!
BUT, in the meantime, Sharon loved her first day and is excited to go back. Yay!

Ride 'em Cowgirl!

2008-08-29T17:57:00.001-07:00

Today Sharon took her first solo ride on Flare (our horse). She's always ridden with me holding on to her from behind but is definitely old enough and strong enough to be on her own up there so we started it today. RJ and I walked on each side, keeping her steady, and Whitney (with little Jack in the baby bjorn) led Flare. Sharon took the reins, said go, started feeling the movement (without me behind her to steady her) and immediately said "Wheeeee!!!" She was BEAMING. She knew she was a big girl and was so proud of herself! She really enjoyed it. The only thing missing is a picture...but we only had so many pairs of hands and they were all busy!!! Flare was wonderful as usual...

And in other news, we unfortunately DID get results from the brief EEG they did on Wednesday and Sharon actually had a seizure during it. She has already started medication and we're on a new roller coaster. We'll certainly keep you posted. We honestly don't have any more information than that to share with you. We meet with the neuro again in a couple of weeks and will get SOME answers then. All she could tell us was that Sharon needed to get on meds immediately in hopes of getting the seizures under control.

We'll keep you updated here as we go through this.
Thanks

2008-08-27T16:54:00.000-07:00

So, i just had to brag about how well Sharon did with the first EEG today. it was a "sleep deprived" one, which meant we had to put her to bed 2 hours late and wake her up 2 hours early. We thought she would be a cranky mess when we woke her this morning, but she was really good. The idea behind the sleep deprivation was so that she would fall asleep at the hospital. HA! RJ and I had a good laugh about that. Our hope was that she would just be calm enough for them to get at least somewhat of a reading. They had told me that if she wasn't calm for them to put the leads on her head, then they would sedate her. Well, RJ wasn't going to let that happen so we certainly had planned to just leave and not get the EEG done but at least say we tried. Well, our little miss was just full of surprises. She was so good and pleasant and sat very still while 27 leads were glued to her head and then covered in tape (this took longer than a half hour to do). Then we were told to have her relax and nap (HA! I say again). Well, she did just lay with me and blew us away by actually falling asleep (after the 30 minute test was done, so they let it run an hour to take advantage of her sleeping). Waking her wasn't fun, but she's such a good girl and completely surprised RJ and I with the whole process!
Again, it is highly doubtful that there will be any results from this test, so a longer one will more than likely be needed. We just had to toot her horn!
And as an update, Great Gram went back to her assisted living home today so that is very nice for her!

WHEW!

2008-08-26T18:39:00.000-07:00

Sorry it has been so long! It's been quite a week!
There are lots of pictures and lot of updates.
First, last Wednesday we went to Lazy 5 Ranch, which is a totally incredible spread of land that you drive your car through and feed animals. It's very laid-back and so much fun. There are zebras, giraffes, buffalo, pigs, emus, all kids of steer and deer..etc etc. As you can see, these animals aren't shy and try to get in the car with you! The only ones fenced in are the giraffes, so it's truly amazing! Sharon loved it except for the ostriches and emus...they were a bit too much for all of us!

Then we prepared for a fun weekend visit with Grandpa Baer...
But in the meantime, Great Gram (my Gram) wound up in the hospital with pneumonia. Since she is 96 (yes, 96) this is usually a pretty grave matter. So, John, Carolyn and Jen Pierce both came immediately with their families. Within a day of being admitted Gram was in pretty rare form and we were having a ball! So much for the solemn visit that we all thought it would be! We had so much fun with the cousins and the little kids. Jen and Lydia and Matt stayed at our house so Sharon and Lydia had lots of time to play and it was great! Grandpa Baer "rolled with the punches" during it all and got to know a lot of kids! We had a few dinner parties and lunches (Jen cooked a wonderful meal for all of us down here! You would have thought we had never eaten before the way we devoured it!!!). It really was a wonderful visit and it was really great for Gram to have the visitors. She's in the hospital for at least another day or so, so it was nice to have people to help keep her company! I'll keep you posted on how she is doing.

RJ and I will take Sharon tomorrow to her neurologist for an EEG. Children with CP have a 50% chance of developing seizures, and CP patients with Sharon's specific diagnosis have a 75% chance. Usually they develop between the ages of 3-5 so we're in the very scary time frame. The nuerologist agrees with me that some of Sharon's sleep issues could be seizure related so here we go. This is something i've researched and been "prepared" for, but in no way are we ready for it. We have held out hope that Sharon would be in the 25% who don't develop seizures, but so far what we are hearing isn't supporting that. Many of you will say "how come we didn't know about this"?? Because we're still very much coming to terms with this possibility and what it means for Sharon and we really aren't up for talking about it at this point. We also don't know anything to tell you more that what i have just written, so please just bear with us as we go through the next 2-3 weeks of testing (tomorrow's test is pretty much gauranteed to be inconclusive because it is a very short EEG. More than likely we will follow this one with a much longer one that will give more results). please just keep her in your prayers (a miracle sure would be nice for this kid!) and we will let you know when we have any more information and are able to share it!
In the meantime, enjoy the great photos!!!

a girl and her pets

2008-08-15T05:20:00.000-07:00

So, i decided to post about Sharon and her furry friends since I realized that they are her playmates, therapy helpers, and just all around friends each and every day without fail.
NOTE: every one of these pictures was taken yesterday, just to show how much time she does spend with these friends each day!!
To start, the first thing she wants in the morning (after she wants to see if Daddy is home or at work) is to sit with Nobu on the couch. He is waiting outside the door to come in and see her. They chill out together until it's time to get dressed and start the day. Once she's dressed we feed the cats both inside and out and she usually wants to say hello to "dog" Dina who comes in from a game (or 100) of fetch. Both are thrilled!
Those are her two "inside" friends.
At whatever point in the day we have a chance to play outside, we are instantly greeted by the squeaks of Kuma "outside cat". I often wonder if he just lays in wait for us to step foot outside because it's eery how we hear that squeak immediately and no matter what door we use to go outside! This cat didn't really pay attention to Sharon until this year. Now that she is up and around and LOVES to play outside, he is her constant companion in the yard. He follows her EVERYwhere she goes and i know that he has saved her from some falls by being right next to her (always on the left side!) so she can grab onto him if she loses balance. (of course, he has also gotten underfoot once or twice and she has had to call for help so that she doesn't trip over him!)
And then there is "outside dog" Inu who is as gentle and playful with Sharon as possible. While Dina can have moments of wildness, Inu is nothing but gentle with Sharon.
And of course, we have the horses. Sharon goes with me each day (Dina joins us most days for the car ride and running around the pasture) to feed and water them. You can see she helps by carrying feed buckets (she takes this job very seriously!).. (and i have to say how difficult it was to get a shot with her and the horses since I was alone at the barn with her and couldn't let her get too close to them without some sort of barrier! and she thought it was funny that i was trying and kept running away!).

naughty girl

2008-08-11T17:58:00.000-07:00

So, here's a post i'm thrilled to give...my daughter was naughty today and i just couldn't be mad. It was a moment where her new language and comprehension skills showed....
I was in the back room getting dressed and she was playing in the rest of the house. It got very quiet and i went out to investigate. She was sitting on the floor holding a ballpoint pen (and looking guilty). I said "what did you do?" (a very vague, open ended question for her). She held up the pen and said "Couch". I looked and sure enough, there was pen all over three of the couch cushions!
For her to be able to process my vague question, and come up with an answer completely separate from that question was wonderful! (and i got the pen cleaned off so all's well that ends well!) It was very cute!

And in other wonderful news, Nina got a great offer on her house yesterday! There wasn't a single showing while Sharon and I were staying there and I was so worried about it, hoping that it would sell for their sake! Nina kept saying "there's a reason it hasn't sold yet, so that you could use it". (it was on the market a long time!)...well, she sure was blessed for that faith (and generousity to us!)...6 days after we moved out they got the offer! Hooray! (anyone have goosebumps???)
I just had to share that news since we wouldn't have done the HBOT treatment if that housing piece hadn't fallen into place the way it did!!!
And i finally got some pix up: here's one of her playing piano with two hands (with no prompting at all), and of her in Panther's gear :)

We're HOME!!!

2008-08-04T19:19:00.000-07:00

Yay! We're home! Sharon had her last treatment yesterday and we are now home. It was hard to leave the folks at the center, they truly had become family to Sharon and I. Little Jenna came just to play "one more time with Sharon". We'll get a chance to see them now and again but Sharon will definitely miss having a playmate every day!
She spent today in a flurry of finding all of her toys (i think she laid hands on every thing she owns at some point during the day!) and of loving all over her animals. She and the dogs exchanged so many kisses that it got a little gross :), and we spent the day calling for Nobu (her fat cat who has been by her side since her therapies started at 5 weeks of age)...our other cat was around and very loving, but we both really wanted to see Nobu! I was getting a little worried but he showed up at dinner time and he and Sharon sat on the couch and had a love fest. We got to visit with the horses as well. It was a bit hot, but they were happy to see us and Sharon was thrilled to pat Flare.
In the meantime, i have misplaced the camera so still can't post pictures...i'll find it once we're more settled!
Since i had thought we'd still be in Charlotte for the rest of this month, it's very exciting: we have a couple of weeks of nothing planned! I am going to get her in with her speech therapist a couple of times over the next two weeks just to take advantage of the gains we are seeing from the treatment and to make sure we don't miss any opportunities to help Sharon get more words out. OTher than that, we plan to just have FUN and enjoy the rest of the summer!! Such a bonus!!!
A lot of folks are asking what we are seeing as a result of the treatments. I'll try to lay it out in a nutshell. But i have to say, this isn't some "miracle cure" and most people who don't see Sharon on a regular basis probably wouldn't notice the changes ( i don't want to downplay what she has accomplished and the results we are seeing because they are great, but for people who don't understand this type of brain injury, i just have to interject that Sharon has a long road ahead of her, particularly with speech. The things i list here are wonderful, but they are sporadic and not consistent. It is going to take many more years of therapy and hard work for her to really be able to speak and communicate).

Here is what we're seeing:

She can walk without her AFO's (again, this is not good for her feet so she'll continue to wear them)
Her balance is much better, she stands with her legs closer together
She can just about run
She can get down off of couches, beds, chairs by herself
She is using her right arm/hand FAR more frequently and without prompting at all (and is even choosing to use the right hand even when her left hand is available!)
She is speaking more in general
She is enunciating ends of words
She has used sentences "Mom, get it", "mom get up" "Back again please"
She is initiating words that she has never used before, without any prompting
She SO PROUD OF HERSELF for all of these things! It's so great to see how pleased she is. She is absolutely aware of her gains and is more thrilled than any of us.

The Countdown is on!

2008-07-31T19:12:00.000-07:00

So, we're truly almost through! 5 sessions left to do! After expecting to be here for more than 7 weeks, this 4 week stint is great!!!! I am so glad we decided to do two sessions a day. She really doesn't mind it and i can now truly look forward to going home (I haven't let myself get excited about it until now!). Sadly, she has begun calling the treatment center "home" (I've been careful not to use that word at all, calling Nina's place "The House", so as not to confuse Sharon). But i think since we do seem to live at the center, she has decided it's home. It's okay, she'll remember her real home and be so excited! I just can't wait to see her with her animals and toys! It's going to be very nice to watch those first few days!

In the meantime, my parents came down again for a visit on Monday (after watching the Panther practice) and then my mom came back down yesterday and brought Anna with her. Mom stayed the night and went home today but Anna is here for the long haul! She's staying until Saturday. It's SO SO nice to have her here! I know it's got to be boring for her while Sharon and I are diving, but she sure doesn't complain and is such a huge help! I think she's warming up to the kids over there so that is good! Sharon of course is in heaven to have her here! Sharon has become very good friends with the little 3 year old daughter of the folks who run the center (Jenna). It's been so nice to see her have a friend. Kids her age usually overwhelm her. She loves to be around them, but usually just watches from the sidelines because they are so loud and active and she gets knocked over alot. But since Jenna has a sister with special needs, she just "gets it". She is very careful with Sharon to make sure she doesn't knock her over, but at the same time is just a fun 3 year old who gets goofy and silly and drags Sharon along for the ride. She talks up a storm but also listens when Sharon chatters and at least pretends to understand what she's saying! I really wish we could be around her more because it's so good for Sharon to have a friend she isn't scared of! (her other friend who "gets her" and is so good with her is Molly who lives in PA so i need to find some of these types around us!!!)
Well, thanks for keeping up with us! I'll get pix and more info up soon. Just too tired now!

Still here!

2008-07-26T05:11:00.000-07:00

So now we have completed somewhere around 25 of the 40 sessions! yay!
This week Sharon has been excited every time we park at the treatment center and can't wait to get there! She doesn't like to leave when we're done. it has made for a much nicer week knowing that she's enjoying herself so much.
Anna came and spent the night one night this week and my parents came down with Rose for the day so we have some good diversions. (the pix are of a "love fest" on the couch with Pop Pop and Namom eating water ice with the kids) RJ is here for the weekend (and i got to go see "Dark Knight" last night! what a treat!)

We are now diving at the deepest level and will stay there until we're finished the 40th session. We can't really tell a difference in the dives other than our ears popping just a little more.
In order to get our two sessions in per day we're having to do one session each day in the adult chamber. It's set up for one adult in a chair like a dentist chair (the outside of the chamber looks just like the other one). So those dives are in rather tight quarters but luckily Sharon is a cuddler and doesn't mind! We do certainly prefer the other chamber where there is room to stretch out!

Of course everyone has the question: is it working? I'll say, i had no expectations coming into this. And boy have i been pleasantly surprised! We can see a lot of differences and improvements. I don't know that people who aren't with Sharon every day would notice what we are noticing, but we sure are. It's nice having RJ come on weekends and confirm what i've been seeing during the week. Her language has definitely improved. it's still going to take lots of work and therapy for her to be able to really talk, but her ability to produce words is improving each day. She also blew me away the other day: Keep in mind, this is a girl who understands everything that is said around her and i KNOW that she has so many thoughts in her head, but because of the strokes she is unable to get those thoughts into words. We have been working for over a year on just drilling words and repetition. So, the other day she was making a mess in the car with her cup and i said "i need that, no no Sharon" and was trying to reach for it. She said adamantly "NO! Me!!!" (this was huge! She came up with those words on her own, not just repeating what i had said, and also was able to use possessive words! yay!)
She also seems to have more feeling in her right arm, complaining of pain and using it much more.
I have heard that we will continue to see gains for months after the treatment is over and that often the biggest gains come in the weeks after the 40th session so we'll see! We definitely feel that it has been worth it and was the right decision (whew!)

daddy's turn

2008-07-19T15:01:00.000-07:00

So RJ has been here 2 days and done the last 4 treatments. The top shot is he and Sharon before they shut the chamber door. It's been a nice break for me and i've had a chance to visit with the other parents while RJ is in the chamber with Sharon. It's always good for me to be around parents of special-needs children to share information, ideas, encouragment with folks who really "get it."
The family that runs the treatment center has 4 girls. Two of them have befriended Sharon and it is making her day to be able to play with them when she gets out of the chamber. There is a 10 year old and 3 year old and they are great with her!
They started diving us deeper on Thursday. We hopefully have one more level to hit sometime this coming week and then they will keep us there until the end of the 40 sessions. Sharon now knows what is about to happen when we get to the parking lot so she gets ancy and unhappy, but is so good and able to settle down once she's in the chamber. Twice a day is a lot to ask of a 3 year old and she's being such a trooper. I wish she could understand that it will all be over sooner if we do it this way!
Thanks for keeping up with us!! It really helps to read all the comments!

one week down!

2008-07-16T18:35:00.000-07:00

We were so fortunate to have visitors yesterday and today. Sharon and I were about going stir crazy! My parents came down yesterday afternoon and then my dad left and my mom spent the night. Then Jax and the girls came down and spent the day and took my mom back with them this evening. Sharon was in heaven. So nice to see her having some fun!
We've started doubling up the sessions (we'll do two a day instead of just one). I'll do this as often as we are able in order to speed up our return home. I was having some pain when breathing so they've had to slow down our dives a little (meaning not go as deep and take longer to get us there). I hope it clears up soon because i want Sharon to be able to get as deep as possible since the deeper we go the better the outcomes could be...
She doesn't seem to be having any trouble at all other than some tiredness (but i think that's also from having sessions at 7:30 am each day...yawn!). I'm still very tired but feeling much less foggy and groggy than i did when we started this. one of the workers at the center said that each session works our lungs/bodies as much as running a marathon! no wonder it's so exhausting! I think i've made it sound like the sessions are tiring, and they really aren't. It's very relaxing and even boring in the chamber. The tiredness is just the affects it has on the body.

Nina has stepped in and saved the day again by getting us cards to get into her neighborhood pools. There is an awesome pool with waterslides and a great kiddie pool so we've been going there each day between sessions and Sharon is loving that.
She's been using her right arm and hand a lot more in the past week and it's very apparent when she's swimming. Very cool!
And tonight as she was getting ready to sleep she said clearly "Love You"...a huge first!
Thanks for keeping up with this and thanks for watching the video...i really want everyone to see how much Sharon has worked and continues to work...she deserves tons of credit!

video

2008-07-12T18:08:00.000-07:00

so, i finally remembered to add this shot. It's Sharon and I before our second treatment. We are in front of the chamber. Pretty cool eh? (dressing for the chamber is interesting...we have to wear only 100% cotton from head to toe, no makeup or lotions, and no jewelry. I have noticed that most parents seem to go into the chamber in their PJ's since 100% cotton clothing is impossible to find, so i will probably start doing the same!)
In the meantime, all is going well. RJ had his first treatment with Sharon today and fell asleep during it (just to show how relaxing it is!)...I'm starting to feel a little less groggy today so i'm hoping that i'm through the worst of my "cleansing" and will now start to feel better! Sharon is certainly no worse for the wear and continues to handle it all very well. We're definitely noticing some amazing things with her that we weren't expecting, but i think it's too soon to really share details yet...part of me wants to wait and be sure it's not just a "fluke"!
As many of you know, we had Sharon's Independence Party last weekend. During it we showed a video that Jason made. I wanted to post it here so that those who didn't get a chance to come could see it...
For those of you who are part of Sharon's treatment team (Whitney??), please e-mail me...i have email access but no addresses for some reason and i want to make sure to get this video to other therapists that you may have addresses for :)
Thanks! and Enjoy!! I'm fairly certain you will need to cut and paste this link into your browser...
http://www.actcasual.com/sharonmov/

HBOT

2008-07-10T19:50:00.000-07:00

Well, here we are. Charlotte is gorgeous (total suburbia, but fun for a temporary home...it's fun to have sidewalks, neighbors, etc.! I've talked to more people on the street in two days that i have at home in a year!).
We are staying in a beautiful condo per the graciousness and generousity of Jacqueline's childhood friend Nina (those who know me from Malvern would know Nina). She just happens to have a "spare" house (on the market). It's only 13 miles from the treatment center so it's wonderful for us and we are so blessed!

So, we've had two sessions so far. it's really incredible! I have some pix but will have to wait for RJ's skill to figure out how to post them since i only know how to work my home computer :) The chamber looks like an MRI machine pretty much. I actually got a little nervous before we got in the first time when i saw how small the opening was. But Sharon was excited to watch a movie so in we went. The first and last 15 minutes (out of the total 90 minutes) is the "worst" of it. It's when the chamber is being pressurized so our ears pop. Sharon complained a little the first time but refused to drink the water i had for her so she just got through it her own way. I swallowed repeatedly and was fine. once that part is over, the 60 minutes of the actual "dive" is really nice. You can actually feel the difference immediately in the air. The word that has come to mind both times for me is "clear". It's just clean and clear and fresh. Sharon and I just snuggle up on pillows and watch movies. These first two dives were in the evening so she was in a snuggly mood. Other times she will probably want to be more active, but it's been a good way to start for us. After our first dive we were both wiped out. She cried a little at night, i'm guessing her ears may have been bothering her. Today we were both very groggy. I continue to feel like i am in a total fog. I'm tired and just feel "off". I asked about it tonight at the center and they said that is totally normal as the toxins are coming to the surface and leaving my body. I'll probably have a couple more sessions like that and then should start to feel really good, full of energy. Sharon already seems to feel great after tonight's session. She did the dive with no complaints at all and came out of it chipper and cheerful (so nice to see that she had very few toxins to get rid of!)
The folks at the center have been very impressed with how well Sharon has done!! They said "we're not used to having kids smile at us through the chamber windows!". The center is run by a family (a woman who has a 6 year old with CP, her sister, her adult daughter, her husband, and her father!) It's really a neat setting, very professional but also warm and welcoming. Sharon is going to become good friends with them all i'm sure!!
I will certainly keep you all posted and will get the pictures up as soon as i can. Thanks for checking in on us!

What a girl....

2008-07-07T16:53:00.000-07:00

I had to add in one more picture of Rose's newest creation: corn on the cob cupcakes!

Well what a fun couple of weeks we have had! Sharon spent two weeks at a Bug Camp for speech and had a blast. It was great because i was able to observe the entire time she was there. One of her friends was at the camp with her so that was nice for both of them. Other than that, we haven't had any therapy at all this summer! Yay! We are loving the freedom of a therapy-free life!!! It's short lived so we do appreciate it.

And then this past weekend we celebrated Sharon's Independance with a big party. i had read about another parent of a child with CP who threw this kind of party and loved the idea. Sharon had to learn how to walk TWICE in the past year and definitely deserved a party! She really enjoyed herself. She did get her first bee sting at the party which threw quite a damper on her day, and then took a really tough fall on the concrete, but overall she really had fun! My good friend Kerry stayed at our house for the weekend with her hubby and their 6 month old Eli and Sharon was in heaven "taking care" of him. She woke up this morning and was disapointed that he wasn't there to play with...
(Aunt Marj, i had to stick a picture in here of your Dan's firework escapade. He called it "the encore to 2003"...we kept it pretty minimal because of fire risk, but i don't think i've laughed so hard in a long time! My dad and Martin were his assistants and held the string of fireworks...until the string burned through and it all went haywire...)
Thanks to all of you who made the HUGE effort to travel here for the party. We know that it took sacrifice and time (and lots of gas money!!!) and we really really appreciate your support and love for our girl! (Aunt Kim gets the prize for farthest distance, coming all the way from California!!) We got some great group shots with at least most of the guests, but never one that had everyone in it (there were between 50-60 people who came!). We just can't thank you all enough...

And finally, please keep Sharon in your thoughts and prayers over the next few weeks. She and I are moving to Charlotte for some intensive hyperbaric oxygen treatment. It's the type of treatment that deep sea divers need if they've got "the bends" (that's the simplest way to explain it!). Sharon and I will sit in a chamber for 90 minutes each day under high pressure and 100% oxygen. It's been used in the past as the "iron lung" and for people with significant skin burns. In recent years it's been used on children with brain injury and has proven to be effective in bringing oxygen to damaged parts of the brain. The risks are extremely minimal and so we feel like we need to at least try it out while she's still young. We're hoping that she tolerates it well and our greatest wish is that it helps with her speech and language. I am not sure what kind of access i will have to computer etc, so i will certainly be posting updates if i am able but if you don't hear from us, that is why. We will be there for 40 sessions, it could take close to 8 weeks.

BEEEACH!

2008-06-22T20:22:00.001-07:00

So, we are now back after two wonderful weeks at the beach. Wow, how nice that was!!! VERY relaxing and fun (I read 5 books...heaven on earth for me!!).
Before the trip we talked with Sharon about it and she was saying "Beap" for "beach". The day we drove to the beach, as we got to the swingbridge that takes us to the wonderful Sunset Beach, she said (with NO prompting from any of us!) "BEEACH!"...too cute and cool that she got such hard sounds out! We all heard that wonderful work many times while we were there.
She had so much fun playing with Namom and Pop Pop that first week (that's them in the top picture...a lot of time was spent filling her bucket with water at her "more" command), and then had a week with cousins and aunts and uncles (Jason, Jax, Martin etc). It was so much fun for her and she was a trooper. She'd have days where she was just wiped out and would need some downtime, but heck, so did I!!
She absolutely loved the sand and water. I also got a bike with a baby seat on the back and she really enjoyed that (especially with Daddy running alongside or Anna riding her bike with us).
The house we stay in is on the canal and we found that she actually enjoyed swimming there more than the ocean...
We're home now and Grandma Baer is in town. It's been very nice for Sharon to have her around and RJ and I have been able to get a lot of necessary work done while she has entertained Sharon for hours!
Tomorrow Sharon starts a two week speech camp at UNCG. I'm hoping she's gotten enough rest this weekend and is ready for action!

quick update

2008-06-11T09:16:00.001-07:00

Hello! I don't have pix to post because we're at the beach and i am using my dad's computer and don't want to try to figure all of that out :)
But didn't want people wondering what happened to us! Sharon and I are here with my parents and RJ is joining us as soon as he can get here (work has been "off the hook" for him...just when he thought he was getting ready to be done school and have a little break, he is getting slammed...hang in there daddy! We are anxiously waiting for him to get here and RELAX!!!)
Anyway, we are having a wonderful and restful time. Well, Sharon played hard for the first couple of days and crashed yesterday (she was cranky and just worn out from too much sun and fun!). BUT, she slept last night without moving or waking up a single time (i don't think that has happened since she was sedated in the hospital as a newborn!) so today she is back to her cheery self. She LOVES the ocean and the beach. We are just staying at the water's edge to play but she'll get a chance to go all the way in once RJ gets here... IT's been so hot that we go down in the early morning and then after dinner but it's been great.
Anyway, you know i'll have lots of pix to post eventually, but not for another while!

weekend fun (as usual!)

2008-06-02T17:32:00.000-07:00

We had a fun weekend, and Sharon had her first sleepover away from us! She stayed the night on Friday with my parents (and slept better there than she does for me! nice!!!). She's getting to be such a big girl!
We had some friends over on Sunday and Sharon had a great time hanging with the big kids Kayla and Daniel. (RJ works with their daddy). These kids were so great with Sharon and I couldn't count how many times i heard them saying to her "well, you'll climb this rock wall someday just like us" or "you'll get up those stairs all by yourself one day", etc. Just totally positive and encouraging with her! Too cool!
I also had to throw in a picture that Sharon took of her shoes...it actually came out really well! She's a total "croc-girl" now, wearing them pretty much exclusively and loving it (and we're loving how easy they are to put on over AFO's. no more broken nails and scraped knuckles for mommy!)
Today we went to an appointment with her orthopedist/developmental pediatrician (he doesn't want to be called that, but he does such a great job that he deserves the title!). RJ joined us which was such a treat! (although i almost got us lost on the way home because i'm used to my mom being there navigating!). Sharon has put on 2 pounds since she started on dairy (that is a HUGE amount for this kid who usually takes a year to gain one pound). And this was the FIRST doctor (i can't even list how many we've been to in three years, but it's a LOT) who actually said what i've often thought: while she's still underweight and we want her to gain more, we can't really use the typical growth chart for her because docs actually want to see kids with disabilities in their legs weigh less than their peers!!! (because it helps "even the playing field"...they weigh less, have issues with their legs, so have less to try to haul around). Honestly, i've been asking this question of doctors for years and FINALLY got some validation today (without even asking, which made it nicer!)
Anyway, this is our second time seeing this doctor and RJ felt the same way i did : he's by far our favorite and we hope he sticks around! He's positive, takes time to talk with us, and doesn't treat us like we are clueless!! Yay! He's all the way in Chapel Hill (at UNC), but worth the trip. We'll probably be seeing him twice a year so he can keep up with Sharon's braces and growth. Such a relief to know that i have someone i trust to do that...
Have a great week!

Memorial Day fun!

2008-05-26T12:39:00.000-07:00

So, we went on the first backpacking/hiking/camping trip of the year. VERY VERY fun! Sharon absolutely loved it and it was so fun to have here there really having fun. Pop-Pop and Namom and Rose and Anna (and Dina of course!) joined us.
Since we take kids along these days, the backpacking has become more minimal. Well, actually, the backpacks have severely increased in weight but we don't take them as far because of little legs, so i think it evens out? (Of course, RJ and my dad may have different opinions on the matter since they wound up carrying "everything but the kitchen sink" in their packs). Sharon is a bit too big for the pack we carried her in so that didn't last long. We'll have to figure something else out for the next trip so that we can walk farther. She did LOVE hiking by herself and galloping on RJ's shoulders up and down the trails.
We camped by a little stream which was so much fun! There were tons of crawfish to catch (my parents got into the hunt too as you can see!), and a really neat tree that Sharon loved sitting in over the water.
Sleeping was a bit rough, we have to work out the kinks there. Sharon has a pretty tough time sleeping anywhere but on her special mattress at home because of soreness in her hips and joints, so being on the hard ground was painful for her. In case you think my mom is a wimp for bringing her pillow, she actually was carrying it for Sharon...it helped but not enough. She was so happy and having so much fun the rest of the time that we just have to figure out a better sleeping situation for her...
I've posted more pix below too...

lots of pix

2008-05-26T12:34:00.000-07:00

So, here are yet more pix. Sharon had such a ball and LOVED all the time with her cousins! One of her favorite things while out there was going for hikes, and Rose obliged many times with her!
When we came home, we had a picnic here at the house (the first of the summer! yay!! It felt good to be back in action after winter!). We actually got to visit with Neil and Sara and Pat Dutilly! yay!

Uncle Fred

2008-05-22T18:26:00.001-07:00

It's been 4 years today since Uncle Fred got hurt. Such a hard day for our little family and we can only imagine how much harder it is for Lorrie, Fred and the kids.
But Fred and Sharon remain huge living testaments to the power of the brain!!! Fred's age is a huge factor in his recovery, but he still has made such tremendous gains in 4 years (long past the time period when the doctors said that he "should" be able to recover). And Sharon, well, she just continues to blow traditional neuro-science out of the water as her brain learns how to make new pathways and adapt to its functional parts.
And for those who don't remember this part: RJ and I were in the process of becoming foster parents so that we could bring non-biological children into our home and hopefully adopt...but Fred's accident and the ensuing weeks of chaos resulted in the surprise of Sharon!!!
So, i have to post a picture of Sharon and Fred, soul mates :) And we send our love, thoughts, and prayers to the Fred Pierce clan...the "new normal" is now a way of life for both of our families!

WHEW!

2008-05-19T19:38:00.000-07:00

Hello!
Well, our household is breathing a little easier....I am officially done with full time work and RJ made it through his crazy semester (and has just started his very last one! yay!!!). I will do some part time work, but mostly will be able to just focus on Sharon and managing the life that she and i keep of therapies and doctor's appointments! She adapted to being my only focus immediately and has no intentions of letting it change anytime soon! (when the phone rings now she does NOT want me to answer it...when i was working the phone would ring and she would bring it to me, not happily, but she knew i needed to answer it). We are enjoying not answering the phone and not being interrupted 30 times a day by work...yay!

Tonight Anna came over to play for a bit (and i had a chance to take a shower! yay!). When i got out, Anna had a big surprise for me: Sharon was dressed up!!! There is no way i can do justice to the accomplishment that this is (Anna can attest to it though...she said "that took a long time!!"). Getting Sharon dressed in regular clothes is always a feat. She's prety good about it, but isn't able to do it herself yet and her tight arm, hand, and leg do make it difficult. Of course, i'm used to it but i know that others are not so Anna must have been quite determined! The other amazing part of this is that i have never been able to get Sharon even remotely interested in playing dress-up. She doesn't like to have "extras" on (no bows, hats, jewelry, sunglasses, etc etc.). Her OTs have always wanted me to get her to play dress up, but it's not something that she had any interest in and i refuse to force something that is supposed to be imaginary and fun! But Anna had her all excited to be dressed up as the witch from the Wizard of Oz, hat and all!!! (she has no idea who that is either, which is cool too!) And the coolest thing is that she wore the clothes until bed time! (except the hat). I am not doing a good job conveying how neat this is...you just have to trust me that this is a big deal for Sharon!!!
So, i can't wait for Rose and Anna to get out of school so they can do all kinds of stuff with Sharon....they accomplish more with her than therapy!

weather and strawberries

2008-05-10T13:40:00.001-07:00

Hello all! We have been out of communication for a couple of days and i know people have heard about the weather we've had. It's hard to believe, but our tiny little town (maybe 8 square miles!) got hit really hard by the tornado. We were so fortunate to not even have a branch down, but neighbors weren't so lucky (see the last two pix. The one with the crane is our gas station...half of it was flattened and happened to be where i was driving to when all of the weather happened! I was out at rehearsal until late that night and that is where some friends meet up with me, leave their cars and then we carpool together. Amazingly, the cars were all fine!!). We really are fine and just feel for our poor neighbors who have lost so much.

Sharon went strawberry picking for the first time yesterday with her cousins and aunt (and me!). She LOVED eating them! She would take a bite out of one, put it in a basket, then take a bite out of another, etc! She was covered in berry juice! It was very fun!
Thanks for checking in!!!

National Childhood Stroke Awareness Day!

2008-05-03T18:15:00.000-07:00

Today was National Childhood Stroke Awareness Day, a fairly new awareness day created by mom's from my online support group for kids with hemiplegia (almost always the result of a stroke). We're just trying to get the word out that kids and babies have strokes and hope that more money and attention will be paid to it because many of them can be prevented.

Colonial Williamsburg

2008-04-27T18:34:00.000-07:00

This past weekend Sharon and I took a road trip (RJ was submerged under piles of school work...finals are this week! yay!) to Williamsburg VA to meet up with the McCabe family (my best friend Angela and her hubby and daughter Molly).
Such a fun trip! Sharon was incredible in the car, my traveling buddy!! She was great company and was patient as a 3 year old can be after hours and hours of driving!!!
And the reward was playing with Molly. They are so cute together! Both have special needs and they just seem to "get" each other. Molly would chatter away and then Sharon would babble with her made up words and Molly would say "now, i didn't get that Sharon, please say it again", and would then translate.
In a store last night Sharon wanted to show Molly a rocking horse and shocked us all as she called out "Moddy!!" She's also been chattering quite a bit since we got home, she must have been inspired.
We did a lot of geo caching, saw Colonial Williamsburg, took the girls putt-putting (first time for each), swam, and Sharon ate lots of ice-cream! yay!!
We're home now and counting the minutes until Daddy finishes this darn semester!!!

2008-04-20T19:25:00.000-07:00

We had a lovely weekend celebrating RJ's b-day. He was able to take some breaks from studying (thanks to being stuck in an airport all day Thursday and having time then to get a lot done!). It was very relaxing and just nice to be around Daddy for an extended amount of time!
Sharon took some time by herself to sit alone and blow some bubbles...(check out the crocs!!! I decided that i can't always listen to her therapists and make her wear "good" shoes all the time...she LOVES her purple sandals!!)
And she and her daddy had a little "discussion" about one of his birthday presents (see the t-shirt). She's not sure she agrees with it, but was willing to go along with it for now since she got some cake...(yet another winner made by Rose...a soccer ball!!)

daddy day

2008-04-10T20:11:00.000-07:00

Sharon's school had a "daddy day" yesterday where daddy got to spend an hour there. They got to eat snack, do some exercising, and then make paper airplanes (RJ apparently has quite a knack for this, something i never knew! ) and blow bubbles. I came at the end to get some pictures. I'm not sure which of them was having more fun...And here's a big brag moment: I was standing watching all over Sharon's class mates with their bubbles, and realized that Sharon is the ONLY one who could actually blow bubbles (and she blows them WELL!!). So many times she is the last to catch up or catch on to something, so to see her doing this first was AWESOME! I had to stop myself from yelling to the playground: "LOOK AT MY DAUGHTER ALL OF YOU!!!" (RJ said he felt the same way!! We decided we could brag here though...)
And then i had to throw in another couple daddy shots. This weekend she helped Daddy hang a quilt in her room (see her hammer), and also got her very first piggy back ride!!!

Big girl

2008-04-08T18:37:00.000-07:00

So this week has had lots of viedo-tape worthy moments (not that i've caught any of them...).
Sharon has started "singing"!!!! She is actually having words and song come out instead of just lip-syncing!! Yay!! She's so proud of herself! (the first song she consistently sings to is my solo from the show i'm rehearsing for right now...she loves it and asks me to sing it multiple times a day! Great practice for both of us!!)
Also, she went pee pee on the potty yesterday! yippeee!!
And today, she shocked both of us by wandering off into the grass! (her biggest goal in PT right now is to learn to walk on uneven surfaces such as playgrounds, grass, mud, etc.) We were watching a friend of hers ride a horse and Sharon was wandering and called "help" and i looked and she was over on grass! She came back to me all on her own and then decided to try it again a few times! Yay!
Oh, and so far so good with the dairy. We're going slowly, but she's handling what we're giving her!! YAY!

Thanks for checking in! And say some prayers for RJ as he continues to work his way through a truly grueling semester. He's finishing up his MBA and this is by far the toughest semester yet. I'm not sure how he's doing it, but somehow he's still working full time and managing his 3 classes...

got milk?

2008-04-01T20:00:00.000-07:00

So today i took Sharon for a "food challenge" to see if she could handle dairy.
She reacted significantly to dairy when exposed to it as an infant and baby and so we have kept her away from it. She has been testing negatively to it at the allergist and i took her for blood work a few weeks ago so they could test for sure to see if she reacts. That test also came back negative. To most people, this would mean "give her milk!!"...but i'm hesitant because of family history. So, today she spent an hour being watched by nurses and drinking milk. She did really well and now we wait a couple of days to make sure she doesn't have any delayed reactions. If all goes well, we can begin to introduce dairy into her diet in a couple of days. Lots of kids do grow out of dairy allergies, and for Sharon this would be HUGE! Sharon is a 20 lb 3 year old, not even on the growth charts for her weight. And growth and weight directly affect brain function so we want to give her brain as many chances as we can!
So, here's hoping! I'm trying to resist a trip to the grocery store to stock up on foods that we've never been able to feed her (mac and cheese! ice cream! cookies!...the list is endless!)until another day or two goes by...
Thanks for checking in :)

More birthday fun and a tribute

2008-03-15T18:50:00.000-07:00

Okay, so today was her birthday party with cousins, etc. Check out that Elmo cake!!! Now, really look at it...and then, guess what? My niece, Rose, MADE that cake! All by herself. She has been interested in cake decorating and this is her first "job"...she took it very seriously and did such an awesome job!!! Too bad we ate it...
The second shot is of Sharon dancing with her favorite star: Hannah Montana (AKA, Anna). Sharon sure had fun with all of this birthday fun! It was such a joy to see her really enjoy herself. Every other holiday or special occasion has scared or oeverwhelmed her, so it was really really nice to just see her have fun!!!!
Today we went to an Easter egg hunt at her pre-school and she had a ball there, even with a loud band playing and so many people around (again, usually VERY overwhelming for her, but she danced and sang with the band and loved it!).

I stuck in the last shot, even though it's a repeat and was taken several months ago...but this is Sharon with Laura, the therapist who got assigned to us last summer to help her with school stuff. She went to preschool with Sharon and helped her on the playground, with snack, made sure she didn't get knocked around by the other kids, taught her how to be more social...and was invaluable during the cast time when the teachers said that Sharon could come to school only if Laura accompanied her (which she did faithfully). Anyway, Laura is one of the therapists that Sharon had to say goodbye to this week and Laura wrote a wonderful note to Sharon for her to read when she is older. I just had to share it because it shows some of Sharon's personality and strength (that someone other than me noticed and wrote about!:)

Dear Sharon-
Today is your third birthday and it is time for me to say good bye to you after 9 incredible months of being able to say I was sharing in your journey. I have told your mom and dad from the moment I met you that you were my reward that I must have done something right to get the chance to work with you. What I know now is you had some work to do with me. I will never forget the gift of your spirit and your zest for life. You have fought to not miss a thing even when your body was weary or hurting you never gave up..it was if you knew there was a big life out there and you were not going to miss a thing. This was most evident to me when we were outside on the play ground you just came alive and would run around that play ground holding my hands chasing that ball like their was no tomorrow-you are small but girl you are mighty- a force to be reckoned with. The second thing you taught me is to laugh more..I loved your smile and giggle and excitement about things you loved and when you would scrunch up your nose and bare all your teeth and giggle it just made everyone's life more fun. One of my favorite ways you showed you were excited was to kick your feet so fast wether it was about the fact that there was Oreos for snack, that you had a good ride down the slide or that we were just having tons of fun that day. I won't forget that life is worth kicking your feet about. I guess two of the final things you taught me although the list is much longer is to pay really good attention and to just be your self. You have really had to work to use your voice to make your needs known and your friend Jill has given you some clues and you don’t miss a beat. Time and time again as we practiced your "G "sounds you would point to your throat just like Jill told you and it helped you to remember. This made me aware of the times when I am not really listening with my whole self like you do and I miss something important or just a little nuance of what someone is sharing with me. Finally you are so completely and totally you and your classmates ( Tom ,Theresa, Yassir, Bowie and Eric) were drawn to you for that reason they just loved being around you as did you teachers. It is obvious to me that you are a wonderful blend of your mommy , with your love for music and art-it seemed like when ever we did a craft you just came alive when you saw the glue and glitter (p.s.-thank your mommy for forgiving me when I got red glitter in your hair when you had your cast on) and paint, and your Dad( although we never got to meet) with your love for the outside and running and playing. But most of all you are just completely your self filled with all the magic and mischief and a dash of stubbornness that one little human could handle. Sharon don’t let any ever tell you you cant do something it may take a little longer or a different way but there is nothing that you wont figure out a way to do. I will miss you little one but I will always consider the gift of your trust in me a rare gem to keep in my pocket. You see I came to work with you but in the end it was you who was the teacher. I wish for you an excellent life..You make the world a better place...All My Love- Laura

the BIRTHDAY GIRL!!!!

2008-03-13T17:50:00.000-07:00

How did she get to be THREE already??
She had the most fun a girl can have on her third birthday!! She got to see all of her therapists today (who happen to be most of her favorite people and who gave her presents, balloons, and lots of fun!). She had to say goodbye to some of them since she will move on now to new folks.
She also had a very fun picnic at a park today with Namom and PopPop (fed the ducks, played on the swings and playground, kicked her new ball around). RJ and I gave her her first bike which she is quite proud of. We'll work on adapting it to be safe for her this weekend. She rode on Flare since it was in the 70s today and gorgeous. She's getting very good at telling Flare to "Go!" We had dinner at my parents' house and she had a BALL rough-housing with PopPop and Anna. So fun to see!!!
She'll have her "real" birthday party this weekend with her cousins etc so there will be more pictures then!
We're so proud of her! She has worked so hard in three years and continues to be happy and loads of fun...

Up again!

2008-03-10T18:25:00.000-07:00

So, i guess we like roller coasters! Cause now we're up again...
Sharon's PT came last week and was very concerned with her leg, so back we went to her hip surgeon...Sharon, Namom, and I are getting quite good at the long track to that hospital!! He did a lot of x-rays to make sure everything was okay, and gave us the "all clear". Sharon did her part by walking fine for him. NICE!
So, since then she's back in business. Still slow going, but at least we're moving again!!

2008-03-05T18:14:00.000-08:00

Hello again!
Still no photos...sorry! She's cute as ever :)
She's had a setback this week and is no longer walking. We're not sure why, but feel that it is most likely a pulled muscle (we hope so at least!). She started complaining of pain in her left knee (her left leg is her strong leg...she relies heavily on it!!) and won't walk anymore. We'll get to the bottom of it and hope that it is simple...say some prayers for her! It's frustrating for all of us to have this setback after she was making such amazing progress...i guess the silver lining is that when we do hold her up to walk, her right leg does most of the work which is a great workout for it and hopefully she'll realize that it's more capable than she gives it credit for!
Next week she turns 3 so i've been in meetings to figure out what her therapies etc. will be like (as of her 3rd b-day she is out of the early intervention program and into the school system). Of course, the "powers that be" want her enrolled in a public pre school but i won't allow that to happen. So, they will have to work around Sharon's schedule (which is as it should be!). I feel badly for parents who go into this with no experience...the school system tries to snowball folks when they get the chance and did not appreciate being told what to do by me. Go figure, the mother isn't supposed to call the shots?? The good news is that they are going to try to work it out that Sharon can keep her current speech therapist. She'll get a new PT, educational, and OT but at least one familiar face with speech! We are praying that the "new" OT might actually be COnnie (She was the first OT Sharon ever had, she's in the archives back in August 2006). We've asked for her and will hope for the best!!!
So, that's where we are!
Peace

2008-02-26T19:36:00.001-08:00

Hello! I can't believe i'm not posting a picture, but i don't have any and am pretty short on time these days...
Just wanted to give some updates:
a few days ago Sharon started taking independent steps!! (her very first ones were while out with cousin Anna..Anna walked away to do something and Sharon took off after her! i just about passed out because i wasn't expecting it at all!!)
She is now walking just about all over our house. She still prefers to hold someone's hand, but is getting stronger every day. RJ and I had held out hope that she'd take steps by her birthday (3 weeks from now), so we are so excited! She is still very weak and it will be quite a while before she is independent as a walker, but it's still amazing! To think of the pain she's been in (and is still in some) and what her bones and muscles went through being cut and moved, etc...
And, (this is actually even more amazing!), she is actually doing a little assisted crawling. Crawling was a goal on her treatment plan since she was 9 months old. I finally had them delete it last summer because she was just totally opposed to it and it became a waste of therapy time. This past weekend she indicated that she wanted to move on her belly so i helped her to get into position and she did it happily. I don't want to push it because it's HUGE and would be SO SO good for her if she'll stick with hit (and she's stubborn enough that if she decides we're making too much of a big deal about it then she'll never do it again). But i'm able to get her to crawl a couple of feet a few times a day (with me holding her up and helping...it's a very hard task that she is undertaking...if you want to see just how hard, get down on all fours and try to crawl with only one arm, and with one leg dragging behind). If we can get her crwaling stronger, this is going to be the KEY to her learning how to get off the floor into standing position (she never learned how to do that before the surgery, so it's a huge goal now...what good is being able to walk if you can't get up and down off the floor??)
So, there's been a lot going on with our girl! and she is just BEAMING all over, so happy to be moving again and taking steps.
We're so proud of her!!!

SNOW!

2008-02-15T20:31:00.000-08:00

So, we were surprised by a gorgeous snowfall yesterday and got a chance to play. Sharon was a bit nervous about it all and didn't like the snow spray in her face while sledding, but eventually was convinced to eat snow and did have some fun...
You will notice that we (mostly me!) are bundled for the COLD...but it was close to 50 and temperatures rose all day...so we mostly sweated while we played! And the snow was literally gone within hours. TOday Sharon and I played outside with no coats on at all...

2008-02-09T17:07:00.000-08:00

So Sharon is getting her share of babies! Her new friend Jack is on the left in this picture and little Phoebe is on the right. Phoebe is the new daughter of another of Sharon's old therapists...

We've been working on getting her to do more pretend-play like dress up etc. and so i left the room the other night to get something and came back and Dina was wearing a purse...i guess that is a good start!

2008-02-05T19:00:00.000-08:00

Having a tea party with Pop Pop :)

So it's been a nice couple of weeks. The weather has been gorgeous and Sharon has gotten to ride on Flare a few times...such a great stretch for her tight legs and she really enjoys it (well, for the first few minutes, then she wants to get off!). I'm so glad she has been able to ride! it's so good for her. I got her her own "saddle" too so she's moving up in the world (it's a bareback pad so that she can still feel Flare moving under her but it has stirrups...of course, i have to figure out how to drastically shorten the stirrups, but it'll work eventually!)

And the best of all is that she has gotten a little more confident about putting weight on her legs (slow but sure is the name of her game these days). I can't even imagine how brave she is just to stand on them after how much they hurt (heck, i was such a wimp with just a sprained ankle...she's amazing!). Anyway, she actually started to take some assisted steps on my birthday...what more could i ask for?!? She is now standing with a fair amount of strength and confidence and loves to walk a little bit with her hands held (very tightly!). She gets either very sore or very tired from walking after just a little while, but progress is progress! We've increased PT to three times a week (because Heck, we don't have enough therapies!) and it's making a difference. We're only going to have the three times/week for another couple of weeks and then it will stop so it's manageable and her PT is really working her and getting results. We're "down to the wire" with all of her current therapies and so her therapists are all trying to cram in everything they want her to know :) (once she turns 3 in March, she is discharged from the Early Intervention program and put into the school district program. It's going to be VERY differrent and i will have very little say in who her therapists will be...i'm sure i will have lots to write about as that all begins to take place...) We will still have the option of hiring these current therapists privately, but i am going to wait and see what she is assigned. I have said all along that this past year would be the most therapy i would subject her to since she is so young. Now i plan to back off a little so that she can have more of a regular life (we spend most our week in therapies when she isn't at school).
Peace!

welcome new friend!

2008-01-25T19:09:00.000-08:00

I just had to post shots of Sharon meeting her buddy Jack. He is 9 days old today and Sharon got to visit him (admittedly, she was more excited about playing with Jack's little dogs, but she was happy to see him too!)
Jack is the son of the folks who keep Flare at their barn for us. Whitney (Jack's mom) used to be Sharon's PT but is now a good friend and we're excited to have a new friend up the street for Sharon to play with and hang out at the barn with! Sure, he's tiny now, but mark my words...in another year i'll be posting pictures of Jack and Sharon and i'll bet money that Jack will be bigger than her already :)

BIG girl

2008-01-23T18:45:00.001-08:00

Here's Sharon with her dogs (her absolute favorite play-toys...they are so good with her!) in front of the wood-stove...nice and cozy!

And the other is of her doing some of her exercises...Her legs/thighs/hips are really tight and she gets very sore with stretching so i've been trying to figure out ways to get her to stretch without fighting it. Now is the time she needs to be riding her horse but it's too cold...soon though, and that will be a big help in her recovery. (she is very hesitant to put weight on her legs, so it's going to be a slower road than i had hoped...) She's sitting on her enormous bear and showing off that she knows how to say "CHEESE" (her cousins taught her this on the cruise...and tonight when i took the picture and said "Smile Sharon", she said "Cheese!!"...which is a really big deal. Not sure if i can do her speech issues justice right now because i'm wiped out, but she is working so hard at just imitating words that are said to her. The fact that i said something to her, and she knew what that meant and was able to come up with the word "cheese" all on her own is huge. You can see by her grin that she knows it and is quite pleased!!) I'll try to remember to spend some time soon and post about her speech...but the summary is that we are treating her for apraxia (feel free to look it up..) even though her therapist agrees with me that 2 years old is too young to put a diagnosis on (i'm sure it's what she has though)..anyway, this is common in stroke survivors. At its most basic form, it means that a person KNOWS what they want to say (for example, "turtle"), but when they open their mouth and speak, something totally different comes out ("clock"). It is treated with TONS of repetition (teaching the brain by rote). (I'd think it was a pretty fascinating process if it weren't my daughter dealing with it)

Anyway, what a tangent! I just planned to post the pictures...and tell how great she is doing with school!!! Before the holidays school had become a nightmare for us, she hated going and screamed and cried every day. I dreaded bringing her back after a 3 week break...well, she surprised me!! Her first day back she was happy as could be and just gets happier each day we go! Today we got to the parking lot to drop her off and she was kicking and squealing in anticipation, and now doesn't want me to take her home when it's time! I think she just feels so much more "able" without her casts on...and those kids are just so good to her in that class that she just fits right in. It's so neat to see. Today when i picked her up she was having a good-natured tug-of-war with a little boy over a toy...i don't think a mother is supposed to be as thrilled about that as i was, but that's so great for her (she is usually very timid with other kids and i've worried that she will be "walked all over"). And if anything will get her talking more, it will be her classmates...so I'm thrilled to have her back there full time (she was VERY part time since her surgery) (and by full time, i mean two mornings a week!!)

moving ahead

2008-01-17T18:03:00.000-08:00

Here's another cruise picture: this was first boarding the ship (I hid the fact that i was terrified quite well!!)...Unfortunately, Darby and Kim (RJ"s mom and aunt) aren't in this shot because they boarded long before the rest of us...(and we all were wearing shirts that said "Goobers Afloat!")

So, We got the "all clear" for Sharon to get back to PT and stand, walk, whatever. A lot of people seem to think that she's just going to get up and walk within a day or two, but that's asking a bit much from her! Kids without CP would probably be up and walking after this surgery within a week or so, but would still need help and time to get their muscles strong. Sharon had weak leg and hip muscles to begin with, then they sat unused after being cut in surgery, so she is facing a lot more healing and therapy to get her strong again. That said, she is tolerating standing (with me holding her up) and taking some (very) assisted steps. I have seen her get significantly stronger and more confident in just two days, so i know that she's going to do this just as quickly as she is able...We were to start PT today but because of "Wintery weather" (it rained all day, with some ice in the morning...all schools were closed, no one was working...gotta love the south!), SO, PT was cancelled...but, Sharon and I haven't been doing therapy together for almost 3 years for nothing! So, i've been working with her and she's doing just great and is so pleased to be able to move!!!
On a side note: i've been trying to figure out how to make it easier for people to comment on here (i know it's quite a process!). I changed a couple of things, so if someone doesn't mind attempting to comment and letting me know if it's any easier, the same, etc. Thanks!

Disney fun

2008-01-13T19:24:00.000-08:00

I have two separate posts up here because i put a lot of pix up and it clogs up the system if i do them all at once...
Anyway, we just returned from a 7 day Disney Cruise...I think there were 16 in all of us that went? my whole family, RJ's mom and aunt, and Jax's mother in law and sister and Zac had a friend that went. Somewhere are shots of all of us, but i don't have them...these may not be the last posts i do on this trip! There may be some other great pictures out there!!
RJ and I have never cruised before so this was quite a luxury. So much great food and service and room cleaning..i was spoiled! Sharon is a bit young, which we knew going into it. I hadn't anticipated how crowded and noisy it would all be (I had an image of serenely floating along the ocean...). It was a bit overwhelming for her and her favorite thing to do was sit in our room. She was a real trooper though and hung in there for all of the island stops, noisy meals, etc. But i have to admit that it was the most exhausting week i've had in a long time! Maybe we'll try one again when she is much older, but for now, i'm glad to be home (I don't think i speak for RJ...he absolutely loved it!)
Let's see...these photos are:
The first is Sharon kissing a little Mickey
The second is RJ and I with a big Donald (Sharon was too scared of the characters to take any pictures with them...she liked them small or very far away!)
The third shot isn't of the cruise...Grandpa Baer got Sharon a slide for Christmas and RJ set it up today in the living room. We haven't seen Sharon this excited in quite awhile!!! The picture is a bit blurry, but she is just THRILLED with her new toy! And her PT is going to be very happy to work on her getting up and down the ladder (once we get the go-ahead to start PT again...hopefully this week!). We take her for another x-ray with her hip surgeon this week and are hoping that he will then give us the "all clear" to resume intense therapies and get her standing again. She is fed up with being carried everywhere and not being able to move, so we're hoping she will be very motivated and will get up and around within a couple of months...i'll certainly keep you posted on her progress (it's a bit of deja-vu to go through this "learning to walk" again...ah well...)

Disney MAGIC

2008-01-13T19:17:00.001-08:00

Here are a a couple more shots...couldn't resist the happy one of Sharon on "Pirate night"...(note her pirate wear...stayed on for 30 seconds!).
And the second one i just love...it's our ship, the Disney Magic, alongside the "Flying Dutchman". It was the actual pirate ship used in "Pirates of the Caribbean"!! The last day was spent on Disney's private island, Castaway Cay, which also happens to be where the three "PIrates" movies were filmed (I walked where Johnny Depp walked!!). This was the best day by far and the island was gorgeous.
the last of these pictures is of Sharon and her cousins singing at the top of their lungs (well, Sharon doesn't make any sound when she sings, but i am confident that one day she will! she loves it so much and i can't wait until she gets some sound out and realizes how much more fun that is!!!)

Merry Christmas!

2007-12-26T07:24:00.000-08:00

Sharon's been having some holiday fun, with visits from both Baer grandparents and daddy being on a nice long break from work!!
There's a shot with Gram and Sharon and I on Christmas morning (Gram was well into the chocolate by then!), and Sharon has been LOVING candy canes, especially the enormous one from cousin Marion. I LOVE the picture of Sharon singing with me. We were playing a singing video game with Anna and Sharon grabbed a mike and was singing along!! And every year I make a gingerbread house with the Messick kids and this was the first year Sharon was interested in helping (or eating it is more like it!)

I haven't updated since she got her casts off and i was hoping for sleep...very funny of me!?? She actually has been in pain most nights and we had her back on pain meds for the first week or so. It seems to be getting easier now for her and we're trying to stop the meds. Her legs seem to want to contract into a curled position at night, which then wakes her up because it hurts. We have been giving her lots of baths and getting in the hot tub with her, which really helps loosen her up. Her legs are still very stiff and sore and she doesn't like to move them out of the casted position. We were told by her doctor not to really worry about moving her legs until the middle of January (giving her bones adequate time to heal), so we're just biding our time.
She is so much happier to be out of the casts! She is able to play with her toys and even scoot a little on the floor. We're prety confident that she's going to come back pretty quickly once we're given the go-ahead to start her PT again...she really WANTS to be up and moving so that's what is going to work in her favor!
Thanks for the continued support! We really enjoyed hearing from so many of you in Christmas cards! I love getting the letters and hearing what everyone is up to!!!
Continue to enjoy the holidays and the CHristmas season! Remember, it's just started!!!

We see legs!!!!

2007-12-14T17:19:00.000-08:00

So, the cast is off!!! Hip Hip Hooray (yes, pun intended). I feel like a weight has been lifted...and i'm sure Sharon does!
RJ and I took her this morning, and after a really really long wait, the process of taking the cast off took 6 minutes. It wasn't as bad as i was expecting (meaning, Sharon took it better than i expected. She sure didn't like it, but she survived). She was uncomfortable for the first couple of hours and we're keeping tylenol in her because her muscles are so tight and sore. We got home and put her in a bath...where she stayed for almost an hour! She was so happy to be playing in the water and the bath loosened her up and also made her legs look human again (they were rather lizard-ish prior to the bath!) (she and daddy had fun blowing bubbles together)
Anna pointed over that they are very skinny, but that is to be expected (and it's not like she had any meat on those legs to spare!).
After a visit from Namom, Jax, and Anna, she perked up nicely and has been having a wonderful evening. She loves touching her legs (and itching them!) and keeps kissing her knees. Aunt Debbie and the House crew sent a great package of lotions and Sharon has been LOVING rubbing the lotion all over her legs....
We hope to see more movement of the legs in the next day or so...they're pretty much still in cast-position.
The doctor doesn't want us pushing her at all for the next month, no standing or walking unless she decides that she wants to. We'll go back for one more x-ray in a month and if she is continuing to heal well, then they'll let us get to work on getting her standing and walking again!!
So, she's off to bed, and here is one tired Mommy hoping that she will sleep better with the cast off...more later!

the homestretch!

2007-12-10T17:03:00.001-08:00

We're almost through! hard to believe but this Friday is the big day. yay!!!
She's had a fun week with lots of her favorite visitors (cat, dog, ally and mimi came back, cousin Rose...) and even was able to do some piano playing! We celebrated Pop-Pop's birthday and it was the first time we've been away from home and she's been able to really enjoy herself, so that was nice! She even got a chance to hang out at the barn for awhile because the weather has been great.
What a trip this has been. Wouldn't wish it on anyone, that's for sure! And we sure couldn't have done it without so much help. My parents cooked, entertained, visited, helped, did whatever they needed to any given day. We had people bring food, toys, and themselves to help pass the time. People sent care packages or called to talk to Sharon on the phone. One of our therapists has cooked for us at least once each week!! It certainly takes a village to get through these 5 weeks! THANK YOU THANK YOU!
So now we wait to see what happens when the cast comes off (well, after the MASSIVE bath she's going to have!). She's going to be so relieved! And let's hope she sleeps at least a little better...
And on a totally unrelated note, it was brought to me attention from an old college friend who was reading through the blog, that i never let you all know that Lil is home from Iraq!!!!! She came home a couple of months ago! yay!!!!

3 down, 2 to go!!

2007-12-01T15:12:00.000-08:00

So our little trooper is hanging in there. Well, she's doing better than that. She's accepted that this is now her life and is her regular happy self. Hard to believe...i think most adults would be complaining regularly! I can't wait to give her the gift of getting the cast off...she'll be so pleasantly surprised that this isn't permanent!!! This shot is a rare one of her in daddy's lap (the lap position usually is very uncomfortable for her, but she was happy eating lunch on daddy's lap today)
So, we've made it 3 weeks. December 14th is CAST OFF DAY!!! yay!!! I truly try to appreciate every minute of Sharon because i know how fast kids grow up, but i'll be honest and say that i have been counting down every second of this cast time!
Her pain is very manageable now, she rarely complains, just a wince or whine now and then. Nightimes continue to be a challenge. She seems to get sorer then and also must be quite uncomfortable trying to sleep in the cast...and now the itching has started too. if anyone has any ideas or suggestions, we would love to hear them! When she was in pain we could give her drugs, but we just don't know what to do for this itching (I was a bit sleep deprived the other night and was ready to cut the top of her casts off myself so i could scratch for her!!)
But in general, she is just amazing. Happy, playful...so fun to be around!

Happy Thanksgiving

2007-11-22T11:57:00.000-08:00

I am part of an online group of mothers of children who have hemiplegia (the type of CP that Sharon has). One mother wrote this poem about her 11 year old son...
It sums it all up better than i could!

Thank You

Thank you dear Lord for sending this boy
Who fills us with love and gives others such joy.

Who could have known that the lessons he’d teach
would come from a place I hoped never to reach.

His road is much harder than mine ever will be
Yet he walks it with courage for all people to see.

I’ve learned from this child not to see what “can’t be”,
But to find all the miracles and see what God sees .

So on this Thanksgiving Day and always …..

I Thank you for every big one armed embrace
And for every new challenge he faces with grace.

I Thank you for all of those lopsided grins
and for all of those kisses that land on my chin.

For each “Look, Mom I did it! Wanna see it again?”,
And for each time he feels, what it feels like to win.

For those DAFOS and AFOS and SAEBOS we score
and for OTs and PTs and STs and more!

For the people YOU send us that throw us a rope
with patience and guidance and most of all…. hope.

Thank You for the honor of raising this boy,
for trusting me with his care and for showing us joy!

2007-11-19T12:20:00.000-08:00

So our little one is back in business. It's amazing that we are barely even giving her tylenol at this point, and three days ago she was still in lots of pain!

Yesterday we had some wonderful visitors come to play and offer some reprieve! Mimi and Ally (can it be i've only just met them this year??) came with games, food, and most importantly: fresh energy! It gave RJ a chance to chop some wood and me a chance to do other things (mostly wander around and wonder what to do since there's too much to try to catch up on!) Sharon took to them happily and had a ball. Thanks Gals!!!! (this was after the worst night we've had since we've been home so we were all very bleary eyed). They tired her our enough that she slept wonderfully last night! yay!!!
And today was a big day for her. She went to school for almost two hours. She was very scared at first and didn't want me to leave her, but she settled down and had fun after a bit. Her little classmates came over to her wheelchair when i brought her in and one of them hugged her. It was too cute! And later today, since the weather was gorgeous, i took her up to see the horse (who i've been missing terribly!). I just carried her around up there and she had fun watching the dog run around and letting the horse give her kisses.
So all in all, a fun day, and comfortable day for Sharon, and we are so happy to be able to get out of the house!!

2007-11-17T12:18:00.001-08:00

Hello!
I've been getting "technical" questions that i thought i would take a moment to answer...and am also going to post a picture of the cast so that you can see what she has to contend with for the next month.
The surgery was called a proximal bilateral femoral osteotomy. Sharon has hip dysplasia (yes, the same thing that dogs get) in her right hip and her left hip was showing signs of abnormality as well. Her femur bones were cut at the top (where the bones sticks out of your leg, well, not "out", but you can feel it if you push on it) and then realigned so that they would fit into the socket. Her sockets weren't forming correctly (they were completely straight instead of rounded).
This surgery has NOTHING to do with her walking or her cerebral palsy (that's the hardest part for people to grasp!). She has CP and will always walk with an uneven gait. If anything, this surgery will actually make her gait more uneven. This surgery was to help her bones form in the correct places so that she will not develop debilitating arthritis in 5-10 years. It was a "quality of life" surgery...There is a plate on each femur with 4 screws in it. This "hardware" will stay in for the next 12 months. This time next year, we will take her back in to have it removed (a simple procedure, recovery is supposed to be immediate).
THe time in the cast is 5 weeks, so we're down to 4 left! Yay! The cast will come off if all is well. After the casts are off, we really don't know how long it will take her to get moving again. Every child is different with this surgery, and kids with CP tend to take longer to get up and walking. It could take anywhere from weeks to 6 months for her to be walking again, we just won't know until she's out of the cast. The doctor said that some children start kicking and moving their legs as soon as the casts are off, while some keep their legs "frozen" in the casted position for quite a while and others (with CP this is most common) pull their legs up and bent and keep them that way for a while.
While Sharon is in the cast she is going to continue with speech, OT, and education therapy, but PT will be on hold until sometime in January. I love her PT and know that she'll help Sharon get up and moving again as quickly as Sharon will be able.
Her education therapist has worked it out that she is going to go to Sharon's preschool with her for a couple of hours each week. Sharon won't go back "full time" because the teachers won't be able to care for her, but she'll go with this therapist and i'm so glad that she's willing to do this! Sharon will stay in her stroller/wheelchair the entire time she is in school so i hope she doesn't get too frustrated. We are going to try for an hour and a half on Monday if Sharon is up for it...
We have taken her in the car and she's handling it well. It takes a lot out of her, but the pain is much more maneagable now. Sleeping continues to be the most difficult for her, but since she's never really slept anyway, it's just par for the course!
I hope this answers your questions!!! Now that the surgery is behind us, i'm more willing to describe it!!! I'm very glad that we waited to do it this time of year. She'd be miserable in the summer with these casts and not being able to play outside.
Oh, one more thing about the casts: i think the picture shows this, but they go to just above her thigh and then stop. They do NOT cover the incision site (which is amazing to me!). But they DO allow diaper access which is a huge improvement over how these casts were done just a couple of years ago. They are purely on for positioning reasons, and the bar is so that she is completely immobolized. You'll see that she's just figured out she can grab on to the bar and pull herself up into sitting, so that makes her happy. Oh, and she drew all over her belly before i took this picture...

little by little

2007-11-13T17:20:00.000-08:00

So, she is now having more moments of being "herself". I can't tell you how good it is to see her smile or hear her "read" a book...
She is still in a lot of pain. I've talked to some people who have had bone surgery and they've said it's the worst pain they've ever felt and lasts about a week before it's truly tolerable. So a couple more days will hopefully get us over this hump. The next thing i'm looking forward to is being able to pick her up and move her around. She is beyond bored just sitting in the same chair all day long! But, she continues to be a trooper and allows herself to be amused by our attempts at entertainment. Nighttimes are still really tough. We're trying a new sleeping position tonight in hopes that we'll all get a little sleep...
We have put her in her stroller and taken her outside a little each day and she does love that...looking forward to more of that and also being able to get her back in the car and take her places...all in good time!
She didn't eat for the first 3-4 days, but is now getting her appetite back (as you can see from the picture we're letting her have whatever she'll eat!!!!)
She and uncle Jason played with the "Gracie doll" last night...
Thank you so much for the continued support. What a great group of family and friends we have!!!
Peace
Jaye, RJ, and Sharon I.

2007-11-11T07:30:00.000-08:00

Well, here's our girl on the SLOW road upwards. As much pain as she is in and as hard as this has been for her, i am still amazed at the fact that she's doing as well as she is. If this were an adult, they'd be totally incapacitated...kids bodies are so amazing.
Anna came over to read to her and she perked up for the first time, wanting a book for herself to read at the same time.
And of course, Nobu her cat is not far from her side (he blends in, but he's beside her in the one shot!)
And the picture with the doll is too precious. Cousin Gracie (whose daddy Adam is battling cancer right now) had the heart to sent Sharon a package of special things which she picked out of her own toy supply! one was this doll, and Sharon loves it and has been playing with it...

home

2007-11-10T05:55:00.000-08:00

Hello, it's Jaye. Thanks to Jax and Jason for keeping you all informed. I won't write much here, too tired! But, thanks for all the support and prayers (and packages! What fun we're going to have once Sharon is up for it!) Sharon is in a lot of pain. This is one of the most painful surgeries for anyone to have because it involves cutting bones. So we are in the throws of trying to keep her a comfortable as possible. She is not very interactive at this point and just wants Mommy or Daddy to be close enough to hold on to at all times. We were told that the first 2-3 days are the worst, so that puts us through tomorrow. And we are already seeing improvement in her pain from the first (awful) night. And while it was a little scary to be discharged less than 24 hours after this surgery, we ultimately decided it was better to leave in the hopes that Sharon could actually sleep since she probably only manage to get about 2 hours total of sleep in the 24 hours we were there. And last night, in her own bed with no nurses barging rudely in (nurses aren't high on my list right now! I can't believe the terrible people skills these nurses had...in a children's hospital no less!) she did sleep better although still in pain.
We are very grateful to her two wonderful doctors/surgeons. They were fantastic from pre-op (when they got me to laugh as they offered me valium) to discharge. They were the ones who stepped in and got the nurses to leave us alone so Sharon could sleep a little and also prescribed valium for her which has been her life-saver to stop the muscle spasms she has been having. Thank God for them (and narcotics!)
We'll obviously keep you all posted. Pray for her relief from pain.
Blessings
Jaye, RJ, and Sharon I.

The day after

2007-11-09T12:19:00.000-08:00

This is Jacqueline - I have posted some pictures of Sharon today. She is doing as well as can be expected. She is smiling a bit more which is nice. She is taking oxycodone to manage the pain and valium for the muscle spasms she is having. These medicines can be taken at home so it seems like she will head home today. There is not much that the hospital staff is doing for her (other than continually waking her up for some reason or another). The hope is that she can get home and get some rest. A specialist came in to make sure that she can fit in her carseat for the long ride - so it looks like a go!

getting better

2007-11-09T12:18:00.000-08:00

Post-Op

2007-11-08T17:36:00.000-08:00

Hello - I just got back from UNC-Children's Hospital. Sharon came out of surgery and was dubbed the "banshee" by the post-op nurses. She was very angry and upset - Jaye was able to go in with her and get her calmed down (with the help of some morphine).
They wheeled her in to her room and got her settled with her own Nemo pillow. She is still heavily sedated for the pain so she is quite groggy but still managed to give a very weak smile to her nurse.
We hope that the family is able to get some rest tonight - they are allowing Jaye and RJ to both stay in her room (yay!).
Please pray for Sharon's pain relief - this is a painful surgery and the next few days will be tough.
Jacqueline

Surgery is done!

2007-11-08T12:10:00.000-08:00

I just got word that Sharon is done surgery and everything went as expected.

There will be another update later on, when there is more to say.

Jason

Surgery

2007-11-08T06:41:00.000-08:00

Hello - This is Jacqueline. For those of you checking in today, Sharon is scheduled to arrive at the hospital at 11:30 (poor baby will be hungry!). Jaye is estimating that her surgery will be around 1. So an update will be posted later this evening or tomorrow. Thank you for the prayers and support!

oops, here's the tennis shot!

2007-11-06T17:57:00.000-08:00

fun trip

2007-11-06T17:53:00.000-08:00

So we took a last plane ride/trip before we're homebound for awhile. I thought it would be good for Sharon to spend some time with her friend Molly (my best friend from high school's 3 year old) so we spent a few days with them. We didn't run around and visit a lot of people like we usually do when we are up there because that is very draining on Sharon and i didn't want to wear her out. We did get a chance to visit with Fred and Lorrie though, which was fabulous! Uncle Fred continues to get stronger and now has had botox and has leg braces. He and Sharon compared...what a pair...they inspire each other :) And Lorrie just continues to work and advocate for Fred, i don't know how she keeps up her energy!!!
This top photo is of Sharon RUNNING down the ramp in Fred's house. I had no idea she could walk on an incline, let alone running up and down it. She had a ball!!! I love the action shot...
The next is with Fred and Lorrie, who just had a big family trip to Disney and were getting Sharon excited for the Disney cruise we will be taking in a couple of months.
The third one down is Sharon and Molly playing hide and seek. They thought they were so clever hiding in the pantry and we just too adorable together. The last shot cracked me up. Molly wanted to play tennis with Sharon...but this shot about sums it up...both going separate directions, maybe even after separate balls??? Angela and I played tennis in our day and we probably looked the same way!!!
So, this will be our last post for a little while, hopefully it will be updated by my brother or sister. We had our pre-op appointment last week and met with both surgeons who will be working on Sharon. RJ hadn't met them before and felt better after talking with them. I did too. They expect a 4 hour procedure.
Keep up those prayers, the procedure will be sometime Thursday morning.
Thank you all...i don't think i've appreciated this blog so much since Sharon was just a tiny baby!!!
Peace
Jaye, RJ, and Sharon Isabella

Happy Halloween!!

2007-10-31T20:00:00.000-07:00

For Aunt Joan especially :)

Happy Fall!

2007-10-29T20:13:00.001-07:00

Hello! I just wrote a long post and it got deleted (three times now...so, i'm giving up on the photos which seem to be the trouble. sorry about that. you can use your imaginations!), i need to get some sleep!!RJ's going to love this top photo...Sharon was leading him around (with Rosary beads no less) as her dog..and was quite pleased with herself and the game. The next shot was just too cute! Pop Pop was here to help move things into the new gym on our property, and he and Sharon and Dina took a break from hard work by resting on some logs. Too cute!! This new gym is quite fun! Grandpa Baer supplied a swing for Sharon, so she can have fun while people exercise...and now we have much more room in our little house! (or we will when we ever get the time to straighten it all up and re arrange!)Today was Sharon's Fall party at school. I get to be homeroom mom (it's a great way to manage the food/Sharon's allergies so that she doesn't have to miss out on special party treats) so i also got to take pictures. She is so darn independent in the classroom! Just so happy to be walking around, playing, hanging out with her classmates. Very nice to watch! I am trying to figure out creative ways for her to stay in school somehow after her surgery. ...we'll see what i come up with. It may be that she spends an hour at a time there...just enough so she doesn't forget what it's like and have to readjust in a couple of months! Which brings me to the big news, her surgery. It's next Thursday (the 8th). We won't know the time until the day before when they call to give it to us. I will try to post before the surgery, but may not have time. We're cramming in as much fun and traveling as we can before she's in casts and immobile so this next week is very busy. I'm also trying to get all my work done so that i don't have to worry too much about it...I will have someone (a sibling probably) post updates hopefully the day of surgery. PLEASE keep her in your prayers. This is very scary and is going to be so tough for her...on many levels. Blessings,Jaye, RJ, and Sharon I.

wedding weekend

2007-10-16T14:26:00.000-07:00

Sharon got to see lots of relatives this past weekend! Cousin Neil got married here in town and there was lots of fun to be had!
The top shot is of Tricia and her kids with us (and Jax and Zac). They came all the way from CA!!! The next one is the "morning after" shot, with a mixing of Dutillys, and Waldeyers.
The third one is out of place, but i didn't have the time to edit it :) Grandpa Baer came for a visit LAST weekend and this shot was too cute!
The last shot is to show off Sharon in her dress (she doesn't wear them often!) with Anna.
It was all very fun and so good to see the relatives.
Sharon is doing well. She is walking all over the place and taking more risks, so she is now covered in scrapes and bruises...she gives RJ heart failure when he's around, but i've gotten more used to it i think. She's still enjoying school and is babbling up a storm. Her speech therapist is doing a lot of testing to get to the root of the speech issues (well, we obviously know it's due to brain injury, but she's trying to pinpoint exactly what needs to be worked on). I'm very confident in this therapist and know she will come up with a good plan of action...
On a side note, we're asking for prayers for cousin Adam (he was with the cousins who came in their RV a few weeks ago). He's married to my cousin JoAnna and they have two very young children. Adam has been diagnosed with very serious lung cancer (not a smoker) and it's a very difficult time for all of them. We are praying for miracles and healing!!!

Peace to all
Jaye, RJ, and Sharon I.

YAY TEAM SHARON!

2007-10-02T17:13:00.000-07:00

This past weekend was the second annual Easter Seals/UCP Walk with Me and Team Sharon once again had a great turnout and lots of fun! (see the team photo!) Such a neat group of folks: family, friends, friends of friends,...so cool to have them all together for a great cause!
Sharon was a hit again this year and had a ball. She actually let herself be pushed in the stroller for part of the walk so it didn't take TOO TOO long to finish :)
Grandma Baer came up for the occassion and also got to go with Sharon to the Dixie Classic Fair, so it was a fun weekend!
Not too much else to report at this point. We are planning the rest of this year around the surgery, so there won't be any trips after that (well, you never know!...but from what we can tell, it's going to be very difficult for Sharon to ride in a car seat for awhile)
She's just a happy, FUNNY girl and so much fun to hang out with every day!

Peace
Jaye, RJ, and Sharon I

another trip

2007-09-25T18:50:00.000-07:00

Hello again! Look at this grown girl! My dear friend Kerry came for a quick visit and Sharon obviously enjoyed it!

And then this past weekend we drove up to DC to go to the Zoo and to see my Pierce cousins (Carolyn and Jen both just had babies and John is in school there)
Sharon had a lot of fun with Carolyn's boys, and just couldn't get enough of the two babies. She hugged and kissed and just loved being around them. Very cute!

Sharon is starting to make more sounds every day. She has actually met all of the goals that we had for speech and new ones have to be made!!! (that hasn't happened very often for us...usually the 6 month reviews come along and we have to keep continuing with the same goals in PT, OT, etc) Very exciting. If you get to spend any time with her, you'll be sure to hear her chatter, and may even be able to pick out a word or two that is thrown in! Very exciting. It will still be years before she is "speaking", but progress is progress!!!

Peace to all
Jaye, RJ, and Sharon I.

so big

2007-09-16T08:32:00.000-07:00

Here's the big girl in her first nightgown. She wasn't able to wear regular nightclothes because of the hip brace, but since she's on vacation from that, she got to pick out her own big girl pj's. And she does think she is hot stuff in them! (funny how marketing works...this child has never seen the show "Dora", but certainly knows who Dora is!)
We're still researching the hip surgery, but have gone ahead and scheduled it for the beginning of November so that we don't miss the opportunity to have it done when we want it (after trick or treating, but before Christmas). It truly breaks our hearts to see how strong she has gotten and how independent she now is with her walking...and to know that this surgery would take all of that away from her for many months.
I've been doing a lot of reading and thought i'd share two books. The first is called "Reflections from a Different Journey" and it is writings by adults with disabilities. They reflect on their childhoods, and things their parents did well or that they wish they had done. It's easy (well, not really!) to read, just short essays.
The second has become my favorite because it really hits home. It's called "You will Dream New Dreams" and is a bunch of parents writing about having children with disabilities. I'm so glad that Sharon (and us!) are living in this time when there is so much more tolerance and acceptance, but it still is a tough road, and one that is very different than for typical children. One of the essays sums it up (called "the Ride") It describes being a parent as being on an amusement park ride: "For parents with typical children, the peaks, hills, and curves in the track are balanced with lots of straightaways. These parents spend more time at the top of the hills, relaxing and looking over the amusement park. They have time to enjoy successes before racing down the incline and to the end of the track. They can climb off the ride at the end. There are more hills on our tracks. The peaks seem higher and harder to reach, the inclines steeper, the curves sharper, the straightaways less frequent. It takes more energy to negotiate each curve and climb up the next hill before reaching a straighaway that allows us to coast for a little while. Since there is no visible end to this ride, our fuel supply dimishes and the motor often splutters."
I have to remind myself that we ARE on a different ride and that i can't expect the same from myself or Sharon as friends and family experience. But boy, talk about being able to truly appreciate every "straightaway" and success!!! To work so hard for something and see it accomplished is amazing, and is something Sharon does almost daily as she works to do things that everyone else takes for granted.
Anyway, i thought that some of you might be interested in reading those books for yourselves. I highly recommend them for anyone who knows or is related to someone with a disability...they really give some good insights and answers. In other news, Sharon is still doing well with school! This is the start of her third week and (I can't believe it!) there haven't been any tears. She is hesitant when we get to the classroom each morning, but then enters willingly and is enthralled by her classmates. When i pick her up she is playing and happy. So great!!!! The hardest part is outside play, and that is just going to take time for her to get comfortable with the uneven ground and equipment. The teachers are attentive to her and i feel that she is in good hands. I'm VERY glad she isn't in school 5 days a week! I know that was the right decision. So now she and I just stay VERY busy keeping up with 7 therapies a week....
Have a great week!
Peace
Jaye, RJ, and Sharon I.

busy week

2007-09-05T20:24:00.000-07:00

So this is an assortment of pictures and information! We've been a bit busy... This past weekend we met up with some friends from Philly in VA to camp. It was very nice to get outside. The top photo is of Sharon throwing food to the ducks, which she absolutely loved!!

We came back from camping and had an appt. with the hip doctor. He did the x-rays we've been waiting on and unfortunately, there is no improvement and they even showed that her left hip is going to need surgery as well. So, we're very bummed about this news. We were holding out hope that her hips would get back into place with the help of the brace and prayers. (but at least now we've decided not to have her sleep in that brace anymore...hopefully she and I will both get more sleep now!) We are still exploring surgery options (which kind and with which doctor and when). We'll probably aim for having it done this fall so that she's out of the cast by the holidays. Keep us in prayer as we try to work through all of the options...

The next shot is of Sharon's bedroom...Namom (My mom) painted a mural on the wall for her. It's too cool. Sharon likes to say goodnight to each animal before we turn out the lights (I think it's just a stall technique, but it's a cute one) I couldn't even get the whole picture in the photo...it's really neat!
And last but not least, this is her first day of preschool! She's at the school door waiting to be let in. We stayed for an hour and i was there, so it was a fun day for her. I know that she will be sad when i leave her the first couple of times, but based on how happy she was there today, i feel pretty good about it and think she's

San Diego fun

2007-08-28T11:59:00.000-07:00

We just got back from a trip to San Diego to visit with family. We stayed with RJ's aunt Kim and Uncle John and cousin Cory came from college to be part of the fun (with a fun friend, in case you see a face you don't recognize!). While there we also got to see RJ's sister Debbie and her husband and three boys (and RJ's GREAT nephew...yep, he's getting old!)
We went to Sea World, which was great fun. The top photo is Kim and John leaving the park with Sharon after a long day. John is the style consultant of the family, as you can see. The next picture is everyone (except the camera woman) including Debbie and Randy at Sea World.
The last shot is RJ and Sharon with the House crew...the boys are all RJ's nephews (Sharon's cousins) and the baby is the great-nephew (and his mommy behind him).
A very special opportunity to see folks we don't get to see often and for Sharon to hang out with aunts, uncles, and cousins!
The plane ride is LONG with a two year old, but Sharon was really a trooper (as usual). She stayed cheerful throughout and even handled the time change pretty well.
While we were out there, she started calling me "Mommy" (instead of MaMa) and said "night night" and "I love you"...so she was definitely inspired by CA air and family!
Oh, and she also learned how to "jump" (it's more like a cute little hop, but it's adorable and she figured it out all on her own)

Thanks for checking in!!!
Peace,
Jaye, RJ, and Sharon I.