Shelby walking!!!!

some videos of the family

Some video of the kids and Daddy having a tickle fight on Abi

This is so very heartbreaking to watch, but for those who can, pay special attention just after the five minute mark, there you'll see our Shelby sharing her story to bring attention to the dire need for funding in brain tumor and cancer research. There is so little money going into this, it's up to us everyday people to save our kids! Please feel free to pass this along to any you know who might be interested, along with her personal website.



http://www.caringbridge.org/visit/shelbyjefferson

I'm not exactly sure why, but my husband decided to shave his two weeks of hair growth while on leave from his surgery into a mow hawk this weekend! I guess he's re-living his youth as he approaches his mid-30's. I keep reminding him that he's really not that old, but I guess this past year has aged us both quite a bit. Anyway, enjoy the pictures, laugh amongst yourselves, have a great time. He loved having it, but thankfully, it's gone now!!

It's tapered 'cause I cut it crooked when I helped him trim it down. I was at a bad angle with kids underneath and slipped. I promise it wasn't that I was trying to mess it up on purpose so he wouldn't do it....that would be so mean for a wife to do.....

He did have the sides shaved down to the skin, but that was really hard to do and would have been nearly impossible to keep up, so therefore the stubble on top.

Hey Mom, notice your favorite ghost flashlight in the background? He finally ran out of juice and can't scare anyone at 3 in the morning anymore!!!!

Shelby's Glasses and Ankle brace

Isn't she just too cute? Our little baby girl got her new glasses today.....we'll see how long they last before they're thrown across the room!! It is very difficult to find frames small enough for her, so our selection was pretty limited. Our insurance doesn't cover glasses, but because Shelby was approved for Medicade, we got one pair for free with the wrap around ear pieces and plastic lenses and then we were able to purchase this pair for her without the wrap around ear piece and the polycarbonate (shatterproof) lenses for only $57, instead of over $200. It's going to take a month or more to get the medicade glasses because they have to be shipped out to be made, but these were ready in an hour. She's down for her nap right now, so we'll get a better test of how long they'll stay on when she gets up. In a couple shots they really look crooked, but I think most of that is just the muscle weakness on her right side, the whole eye and eyebrow droop so it makes the left eye look much higher. We have also started weaning her down from her decadron (steroids), and were able to go down another 2 ML's today, so she's now down to 6 ML's a day instead of 10!!! So far, so good, she's been tolerating it well. We go to the hem/onc clinic on Thursday and they'll check her out on their own there, but so far, so good!
How smart does she look? -- we're working on telling her over and over how pretty they are so that she, hopefully, WANTS to wear them. They really look crooked here because she's cocking her eyebrow.
Sitting pretty in her St. Pats day outfit, made by Mommy of course! Those are her cute little green high top boots to help support her ankle when she's not in the brace (which we think she's doing better without anyway, but that's down further in the page!).
Now, anyone who knows Shelby personally will immediately recognize this pose.... it's a Shelby fit, we just ignore them and walk around her!
This is Shelby's new ankle brace. It is articulated at the ankle so that she can still bend it, but right now, Tim and I both think that she's actually walking better WITHOUT the brace than with it, so we're letting her go on her own for now. As soon as we can get the insurance to figure out what they are doing, she'll be back in PT (she's been out for a week now because of them!), and we'll get a second opinion from her therapist, but she's going like gang busters and not swinging her leg out much at all any more. It is a cute little brace though with the little butterflies on it!

You can certainly tell that she crawls quite a bit. Her poor knees are so red and raw from it, even with me putting lotion on them 3 times a day.

She had gotten her jeans really messy earlier, that's why her outfit is not quite matching!

More Eye Info, MRI update and walking

Shelby officially now has no more corneal abrasion!!! She was seen on Tuesday, and all that's left are a few spots which are nothing more than a severe case of dry eye, but that can be from the steroids. She gets the erythromyacin in her eye 4 times a day now, and she's really good about letting me know if her eye hurts so that I can put more in for her. She grabs the ointment, or points to her eye and says 'eye'. She is going back in next Tuesday for Dr. Goie to check things out, and then will get her permanent stitch in on Thursday (Feb 7th). This is supposed to be just in the corner of her eye and will help her blink fully. She's getting her eye much more closed, but it's still not quite far enough to prevent the dryness, so this stitch will help her out in that department. We're going to wait until that exam before getting her glasses since there's been so much improvement. Her eye is really clear now, so clear you can actually see her eye ball which you couldn't even two weeks ago. We're hoping that means she can see more now, but Dr. Goie will be able to tell us more about how she's seeing after her exam Thursday. UPDATE--- After her visit with Dr. Goie it was decided that she's doing so well that the stitch is not needed after all, unless she does something to damage her eye, so we're on a wait and see with that, but she's doing REALLY well with it.
Now, for the really GREAT news!! She had her first post radiation MRI yesterday (on the 31rst), and while we don't have the 'official' results yet, Dr. McDonough was able to tell us today that there is NO NEW CANCER RE-GROWTH!!!!! There are a few abrasions from the resection surgeries, but that's typical four months post-op, so they are not worried about that at all. The swelling also appears to be going down, but we can't start weaning her off of the steroids until it's read further and closer. So, some time after Wednesday next week, we can call in for an update on the read to find out how much we can go down on the 'roids! She will get a scan every three months this first year, and then fewer each year after that. Our next appointment is on the 21rst, so we'll have even more information then.
Out little Miss Shelby had PT this morning (she goes twice a week) and did really well. She's working on going up and down stairs, using both hands at the same time, walking holding on with only one hand and her balance (this is off mostly because of her eye). She did really well this morning, but the most exciting thing was after we left PT and went to Mommy's PT appointment. She usually gets down on the floor and plays with a ball while we're there, but today when I got her out of the stroller, she was asking for the ball which was about 5 feet away and I told her to go get it if she wanted it (she hears this a lot - no babying her, she's got to work to get things), and she just took off WALKING to the ball. She went the whole 5 feet, all by herself, holding on to NOTHING!!! She's taken a few halting steps before, but only 1 or 2 at a time, so this is a big improvement. She was fitted for her AFO (ankle brace) yesterday, so we'll be getting that on the 13th. This will keep her much more stable and keep her knee from hyper extending, which will make her want to walk even more!!
Last but not least, her lip is getting better. You can see in her new welcome photo (the one with the 'Warning' T-shirt), she's got a pacifier in her mouth. We really don't like them, especially in kids as old as her, but it has kept her from chewing on her lip. She keeps it tucked in to the side of her mouth and chews away on that, instead of her lip. The sore is less than 1/2 way across her bottom lip now and not nearly as red. Hopefully by next week, it will be completely gone. We talked to her doctors about it yesterday and they were OK with it and couldn't think of anything else to do to keep her away from herself. At least we're moving out of her body with her chewing and picking. She started out chewing the inside of her mouth, then went on to picking at her eye, then to her lip....so in the big picture, a paci is NOTHING!! Apparently this is a common thing with these kids, they have a compulsion to pick, chew or just basically mess with something, anything. It might go away with the steroids, or maybe not. It's just another wait and see.

Shelby's CaringBridge web site

I've created a CaringBridge web site for Shelby which I will be updating much more regularly than I've been doing here or through emails. I think if I have one place to update and everyone has that link, then I know you'll all find the new information on your own...at least that's my hope! Anyway, here's the link
http://www.caringbridge.org/visit/shelbyjefferson

Shelby's Story - written in November 2007

Shelby started getting sick in the middle of September, pretty much at the same time we went home to see Grandma, and was not getting better when we came back. She did have a big fall while we were back, she fell about 2 feet out of a camper onto a cement slab straight on her head. We rushed her to the ER at Offutt and were sent home without a CT scan since her eyes looked fine. I had been taking her to the doctor off and on for two weeks, she was even admitted the last weekend of September at the army hospital, but they just couldn't figure out what was wrong with her and kept sending her home. She was throwing up nearly every day for three weeks, was slowly becoming more and more lethargic, so lethargic that she actually stopped walking about a week before we found out what was wrong. We got home on a Wednesday, that Friday I was told she had an upper respiratory problem and it should go away within 10 days. It was not getting better by that next Wednesday so I took her back in to the ER and was told after chest X rays and an entire bag of IV fluids that she had a stomach bug and was given a suppository anti nausea medication for her. That Friday, she had stopped walking and was throwing up everything she ate so I took her back in...this time they admitted her and kept her on fluids for three days, took more chest X rays and abdominal X rays, thinking that she had an intestinal blockage. They went back and forth on whether or not to give her a CT scan (I'd told EVERY doctor AND nurse that I saw that she had fallen on her head back home HARD), but ultimately they decided not to. We were sent home Sunday evening with the doctors having no clue what was wrong with her, but she hadn't thrown up while she was there. We were told to bring her back if she got worse again. I really think that they thought I was suffering from Münchhausen by proxy because they could find nothing wrong with her after three days of looking. On Tuesday (October 2), she was throwing up almost constantly, the only time she didn't was when she was sleeping, so I took her back in to the ER after dinner (when she threw up 5 times). We got there around 8:30 pm, sat FOREVER (it's an Army hospital) and were finally seen around 11pm. We were sent down for more X-rays, both chest and abdominal and came back to the ER (in this hospital you walk over to the clinic to get it done, then back to the ER -- even when you're 35 weeks pregnant and carrying an 18 month old). By the time I got her settled back on to the table, they sent us back because one of the X-rays got messed up. So, off we went again. When we got back, we had a different doctor because of shift change, so I had to tell the whole story again to him. This time, when I mentioned the fall on her head and the fact that she had stopped walking, he took note and wanted to see her try to walk. Immediately after, he sent us BACK to X-ray, but this time for a CT scan of her head. We sat in the room for another hour or so until the doc came back in around 1 AM and told me that my daughter had a large fluid build up on her brain (hydrocephalus) and what looked like a mass forming at the back of her skull. Just like that, all by myself, he drops that bomb on me. He said that they were going to send her down to MCG (the large medical college hospital with a great children's center) right away. By 2 AM we were on our way downtown by ambulance, which meant that we had to leave our van at the hospital, leaving Tim with no way to come down to us since our only other vehicle is his bike. He waited until 5 and woke a buddy up to take him and Emilia in on post to get the van. Meanwhile Shelby and I sat in the ER until about 5:30 while the docs looked over her CT scan. They came in and told me that they were going to have to drill a hole in her skull and insert a tube to drain all the fluid off. I held her while they put her to sleep and put the breathing tube down her neck. That was the last time she took a breath on her own for nearly two weeks. They made me leave the room while they put the tube in her brain, and while I was out waiting, Tim and Emilia came in. We went back into Shelby's room and saw her hooked up to a breathing machine, multiple IV's and with a tube coming out of her head to drain all of the fluid out. An MRI was performed later that day and that's when we found out that she had a posterior fossa ependymoma, which means that she had a large tumor at the back of her skull. The nuerosurgeon showed us the MRI and explained exactly what he was going to have to do to get it all out of her. Her surgery was the next day, and her doctor was able to get 95% of it, so she had another surgery the following Monday to get the rest of it out. This is the best news we could get, this type of tumor is known for being hard to get out 100%, so that combined with her young age are working in her favor greatly. The tube in her head draining the fluid started to leak, so there was no way to test to see if her brain was able to drain the fluid on it's own now that the tumor was gone, so a shunt had to be placed to pull the fluid off. She will have this the rest of her life, but she should have no long term problems because of it. It sits just under the skin behind her right ear and snakes around over her breast plate and rib cage to drain directly into her stomach. After that surgery, the docs tried to remove the breathing tube, but she was just too weak to breathe on her own, so the tube had to go back in after only three hours. We waited until Sunday (the 13th) and they tried again, and this time it worked! Around this time, it was discovered that Shelby had a staph infection in her spinal fluid, so a strong course of antibiotics was started to make sure that it all went away. We stayed in the PICU until the 18th when we were moved up to a "regular" floor. Since we've been there, she's had a central line started (an IV that goes under the clavicle bone and directly into a major vessel into her heart), because the poor girl inherited my bad veins and had to have new IV's put in every other day or so. She also had to have a G- tube put in, which is a feeding tube that is inserted directly into her stomach. Because of the multiple brain surgeries, Shelby was mute (but does still know her sign language), and can no longer swallow on her own, she is re-learning how to sit up right now and after that we can start working on her crawling and walking. She works with a physical therapist, occupational therapist, speech therapist (to help her re-learn how to swallow), and I'm sure that more will be added in time. She can say Momma and Dadda now which impressed her surgeon immensely!! She will come back to us, it's just going to take some time. She is in radiation now (this is a Mon - Fri thing for 35 sessions) and that will go on until just before Christmas. The tumor came back as a level three out of four, so we wanted to start zapping it ASAP so that she would have the best chance possible. Doing the radiation, she has a 70% - 75% chance of this never coming back....much better than the 0% - 50% chance she would have had if we did nothing. She is doing so much better now, and should be home on Wednesday when she's done with her antibiotic for the staph infection. She'll come home with the feeding tube, but we've done that before, with Emilia. It's in a different place, but we can do it so that she can come home to us. Now, the reason I'm back home and not still at the hospital with her (Tim and I have been staying there with her, me since day one, and Tim since his parents came down to help take care of Emilia on October 4th), is that we had our baby boy Josef Hoyt on Halloween!! He weighed 8 pounds even and was 18 1/4 inches long. We came home last night (the 3rd), which was unfortunately, the same day that we lost my Grandma to cancer. It's been a rough month, but Shelby is back on her way to health, our baby boy is here, and while Grandma will be so sorely missed, she is no longer in pain. She did fulfill her promise to me, she told me that she would not leave until she saw my little boy, and one of the last things she did before slipping into the final coma, was to listen to his cry on the phone and see the picture that was emailed to her. She wasn't able to speak by then, but I was told that she got a huge grin on her face when she heard him cry, and was smiling for a while after seeing him.

This was written just before Shelby Came home from the hospital, but it serves as a good update for those who may not know the whole story since I haven't updated this blog since then.

Emilia's 5th Birthday!!!

Yesterday was Emilia's 5th Birthday (yes, it's hard to believe that she's THAT old), and she has been waiting for this one because she knew what her big present was....her very own motorcycle helmet. She's now officially old enough to ride on Daddy's bike on the streets, but she had to have a helmet first. Mommy took in cupcakes and popsicles to school so that she could share with her new friends. She helped me make the little bitty cupcakes (just the right size for 4-5 year olds) the night before, but was surprised at the popsicles as an added treat! We stayed for a Karate demonstration where she got to kick the big bag and yell "KIA" (I was thinking, hey, that's what I drive!!), and then we came on home. She was in her jeans before Daddy even got home from work (he was only about 10 minutes behind us), just waiting to go for her first ride. Daddy insisted on another safety lesson even though she's had it many times over, just to make sure that all the rules are still up front in her brain! She was so happy and told me many times how much better it was to ride on the street than in the back yard. She did think that the helmet was pretty heavy and her little neck was having a hard time holding it up, so Daddy told her that she'd have to get a ride every day until Biker Sunday, just to make sure she's strong enough to go on the ride with him (since baby AND Mommy won't fit on the back with Daddy). Check out the pics below...

Can I put it on? Can I put it on?????

Check out that HUGE smile!!!

Getting yet another lesson on what NOT to touch on the bike and exactly how to get on....safety first, you can never have too many lessons on that.

Going down the street

Going up the street


Coming back from her very first ride on the streets....doesn't she look like a HAPPY girl?


After they got back, we had to hurry up and head out for practice at church, Tim would have normally skipped it, but since this Sunday is Biker Sunday, he really needed to be there since it's a big music day. We took her out to Applebee's for her birthday dinner after practice, and she had fun eating her corn dog and fries. When we got home she was able to open up (well, I may be a little loose with my words there, they weren't actually WRAPPED, hence the closed eyes!!), her presents from NaNa. We haven't been out shopping yet for her presents using her money from Grandpa and Grandma and Shray NaNa yet, but we will soon. She got a cool chalk stamp set and a Princess ballerina kit/toy/camping thing. She spent last night in her tent camping on the floor of her room in her sleeping bag...she thought that was pretty cool too.

waiting with eyes patiently closed

oooh...a sidewalk chalk, stamp thingy

HI
YEAH!! A Princess/Ballerina tent, sleeping bag, blow up chair and STUFF!!!

Checking out the loot

This is what is in the princess/ballerina pack

Princess crown AND a Birthday crown

Itty Bitty cupcakes

Emilia's (umm humm) do-it-yourself Haircut

When Emilia was supposed to be taking her nap last Thursday, she instead decided to have a little "Fun". She found an end piece of crayon and drew all over Abi's comforter, then she found a pen, and wrote all over the sheet. She also went to the bathroom (which is allowed, even during nap time), but instead of just going, she put on Mommy's deodorant ON TOP of her shirt!! The big one though, you know, the one that brought Mommy to tears, was that she decided to CUT HER OWN HAIR!!! Her hair was in braids, so she decided to snip the ends of her braids off, which made her hair pretty darn choppy in the back, but then she decided to cut off a huge chunk of her bangs.....now that one can't be fixed!!

She was not very pleased with herself once it was done, can you tell?

Here's a close up of the bang damage


The back of her hair, it WAS all as long as the longest piece there, clear down her back!

Another shot of the back


So, for her punishment, she had to call both of her grandma's to tell them what she'd done (humiliation works very well on this age, better than a time out or spanking!), and she also had to go to school with her hair different heights. There's not much that could be done about the bangs, but luckily, she accidentally left a big enough piece, that I can part her hair to cover most of the missing piece. The back really just needed to be straightened out, but we decided that since she'd done this because she wanted to have short hair (she's been asking since LAST school year), it was probably best to get it cut shorter like she'd wanted it. On Friday, after school, I took her to get her hair cut and here she is....MUCH happier, with her new cut!

it actually turned out much cuter than I thought it would

model pose of the new cut
Isn't she cute??

First day of School 2007

On August 13th, Emilia started her first day of Pre-K!! She is four days too young to get into kindergarten down here (don't get Tim started on THAT one!), but she needs to be around other kids, so she's going to a different pre-school this year. She's very excited to be going to school again, but this year she goes ALL day and ALL week, so it's quite a change for all of us. She needs to be there between 8 and 8:30 in the morning and I can pick her up between 3 and 3:30 in the afternoon. Her teacher's name is Miss Katrina, and the helper is Miss Diane. She's loving it so far, but has had to miss about a week already because of her tonsillectomy/adnoidectomy at the end of August. She's going to miss another week in the middle of September when we go back home, but it's definitely a necessary trip! This school is a big change for us since she was able to go to a Christian pre school last year, but we are in the south, so the kids are still allowed to say a "blessing" before they eat lunch if they want. She's having loads of fun in her new class!

Here she is posing by Mr. Tree. She still needs to tell him good morning every morning, and she says hello to him again when we get home!


The girls in the van, waiting to go!!

For sure now, It's a boy!!

We had another ultrasound today on the big machine, and the baby now weighs nearly 5 pounds!!! He did turn this weekend (I can tell you for sure it was on Saturday because I was bawling on the bed because it hurt so badly!), so he's officially head down now and VERY low. I shouldn't be surprised though, the girls were low early also, there's just not a whole lot of room inside Mom to allow for dropping room. He's a bit too scrunched up to measure his length, but all the measurements they could take were right on track with the two other ultrasounds they've done downstairs.

Here's a cute picture of his little foot kicking the tar out of Mommy!





THIS is the shot Tim was waiting for, the for sure, no doubt about it, this is a BOY picture!!

Sea World

*** DISCLAIMER***
I realized after loading a couple of pictures that these are going to be completely backwards, so if you want to see them in order, start at the bottom.....sorry

So, we were able to go to Sea World this summer and of course, I hadn't put the pictures up yet, so here they are. Bush Gardens is nice enough to offer military members and up to three dependents FREE admission into one of their parks once a year, so we took them up on it this year and ALL of us got in for FREE (Shelby was too little to cost anyway)!!!! We also were able to find a GREAT deal on a hotel that had TWO rooms, TWO bathrooms, AND a kitchen for only $50 a night!!! That was so nice, the girls were in one room and each girl even got their own bed since there were two beds in the room and we took the pack n' play for Shelby. Mommy and Daddy had their own room too!! How nice. We drove down on a Tuesday, went to Sea World on Wednesday, and drove back on Thursday....not a long trip, but we had loads of fun and only used 4 leave days (Tim had Monday off too, but had to be back on Friday or we'd get charged leave for Saturday and Sunday too, and we want to have some left over for when the baby comes!). Anyway, enjoy the pics.....



Poor, tired girl, it was a LOOOOONG drive

Scrunchy Chipmunk cheeks

This is what greets you on Daytona Beach when a storm blows up.

Isn't it a pretty storm?

Ooooh, how dark!!

It was just like Baywatch when the storm popped up, the trucks drove up the beach and the lifeguards blew whistles getting everyone out of the water so that they wouldn't get hit by all the lightening. It was pretty though out over the water.

On comming storm.

Miss Emilia didn't want to get out so soon.

There's Daddy trying to herd the monkeys out of the water.

Abi photo montage..... This is when she fell, skinned her knee and found a sand dollar.

Trying to get up,

Up and running....

She's good, with just a slight boo-boo on her knee.

Daddy holding the littlest water baby, she LOVES water of any and every type!!!

Emilia picking up sea shells.

Daddy took Shelby FAR out!

And he got hit with a wave, Shelby loved it though.

Abi and Emilia picking up shells.

Shelby's first taste of the ocean. She practically ran all the way from the van down here, it kind of reminded me of my first trip back to the ocean right after my high school graduation, I just wanted to get to the water...it gets in your blood.

All four girls (plus a little boy inside Mommy) on the beach.

The "Believe" Shamu show

This was so great to watch...we left with not just one, but TWO girls that are more than ready to become Marine Biologists so they can swim with the big whales too.

Riding on a whale.

FUN!!

Abi's a bird chick, so I took a picture of this one for her, but just as I was snapping it, Tim yelled out, watch out, it's going to get you....

And the bird flew away from the HUGE whale!!

Aren't they sweet?

waving

waving with his tail

whale kisses

Good Job!

Whale surfing

underwater surfing

more whale kisses

Good whales

waiting for treats

Isn't it amazing how high those huge animals can jump?

MORE whale kisses...

Fresh fish, what a treat!!

Aren't the manatees beautiful? I know, they're kind of an acquired taste, but I did so much research on them in high school, back when I wanted to be a marine biologist that I just had to see some up close and personal. For being the closest relative to an elephant, they are so graceful under the water.

Beautiful sea cows, did you know that these animals were the start of the legend of mermaids? I think those sailors had to be out to sea for a LONG time to picture these as beautiful women swimming towards them!!

Abi and Emilia looking at dolphins under water.

Abi is in LOVE with dolphins, so this was her absolute favorite part of the day, everything dealing with the dolphins.

more dolphins

The dolphin tank

Emilia tight rope walking on the curb by the dolphin tank.

All three girls trying to touch a sting ray...yes, Daddy is holding on to Shelby, she's not hanging over the ledge by herself.

Daddy and Emilia checking out the sting rays.

Abi and Shelby with the rays.

Abi and Emilia at the entrance to the park by the pink flamingos. Did you know that they are pink because they eat shrimp?

OK, this one is totally out of place, but the big girls climbed into bed with Shelby one morning to wake her up, and the pictures were just too cute. I personally don't remember being small enough to fit three people in a crib, but it works for the skinny girls!

This one was taken by the Sea World people, but how cool that they got one of Abi feeding a dolphin....she was SOO excited about that!!

This is all of us feeding the dolphins, I was amazed that they were able to get all of us into one shot. We don't know who the chick behind us is, but she kind of reminded me of Courtney.