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.