3 months and 3 days.

Jenna is doing well. She is running, jumping, playing with friends, whistling and yet, there is still so much she can't do. But, she's not frustrated by that. It is so inspiring to see her, struggle and then just ask for help. No shame, no embarrassment, no problem. Maybe that is how we are supposed to be in other parts of life. My, what we learn from our children. She also has some speech delays, we knew this last year, but she's made little progress "on the test." However, I think she is fine. The therapists were not too concerned either, they think her conversation speech is ok, we'll just have to make some accommodations for learning new stuff and for testing what she knows. Ah, the brain is amazing. Otherwise, spring is here and we are living it up. And celebrating NO SEIZURES!!!!

Hello from Hemphill Land

We are doing great, but still busy!!! Jenna has been spending the Spring Break in East Tx. However, she'd rather be at the beach!! But with the 4-wheeler, the country side, and grandpa at short order, she really has it made and is having a blast.She has been walking and gallivanting about. It is amazing to be away from her for a few days. She gets stronger before your eyes, but you just can't see it until you get some perspective. We are still watching and waiting about her "cancer." Repeat MRI in 6 months. There are lots of changes on the newest MRI, but none are too ominous, unless they change over time. So, time we'll give it.

MRI tomorrow.

Someone is having a hemispherectomy today. It is weird to think we just did that EXACTLY 2 months ago. I remember her sleeping in the preop area. I remember them taking her away just as she woke up. She was goofy from the Versed. It went so smoothly. Even on the heels of the 9 hour surgery 10 days previous. It was so hard to wait in the waiting room, but I laughed when I walked in behind Mark and he had placed our stuff in the exact same place Amy and I had sat during the previous surgery. I quilted and Facebooked. It was actually a relief when they came out and told us they had resected the brain. There was no replacing it.  At least I couldn't chicken out anymore. It was probably about this time we were getting to see her in the ICU. I know exactly what that mom is going through. Her child is laying on one side, swollen monitored, and hopefully intermittantly awake and yet, still her child. It was hard and easy. 2 months ago today.

Ha! 2 in 24....

Jenna did so great today at therapy, I just had to brag. She was able to turn her hand over several times in the pool. She is a rock star. And, she walked all the way to the bathroom with no brace on. However, her foot was purple. It was so purple, I could see the color difference from the shower with no glasses on. They said it was from the low tone, and movement. It also affects the small muscles blood vessels. We are heading to church for the first dinner since we've been back! Yay. Things are starting to get more normal.

At least it hasn't been a week.

Still waiting on word from the doctor. Otherwise, Jenna is almost completely healed up from the bone marrow biopsy and aspiration. Just a small crusty scab remains.

In other news. Jenna has started intensive outpatient therapy this week. She is doing great as usual. She is working on all the usual stuff, some speech, oral tone, blowing whistles, and her bite stick thing. And she is walking more and doing e-stim on the leg and arm. She requested to walk on the treadmill, and walked for 4 min. WoW!!! She is also working on getting some hand function back.

We have contacted Medicaid to get some assistance with her care. It is amazing how much more intense her care is when you come home! It is never ending and we will need help for the long haul. She doesn't want to be left alone, like in the living room while I am in the kitchen. And she still need a lot of help even with simple things like scooting up a chair. But she s doing well in so many way I can't even believe. She will sometime just appear upstairs, like if I run up to brush my teeth. And today, I worked on helping her learn to get down by herself. But She is still too scared to do that. She can't get all the way down to sitting without help right now. And I have her scooching down the stairs.

I also ordered her a new wheelchair. I do not care if it gets reimbursed. Teh wheelchair man came out tonight and added her seatbelt. When he was doing that, I asked about extenders for the brake because EVERYONE has pinched their fingers between the brake lever and the armrest.  He said the brake lever was too big for his extenders. He then proceeded to try out the brake lever, and pinched his finger so hard, it started BLEEDING. New yellow smiley face wheel chair for Jenna!! It does not appear to have the same design flaw this one does. We shall see, ships in 2 days!!

I was super able to get Jenna ready for bed and all the stuff that goes with it. But is has been more challenging to have both of them. And, med administration has been a little more poorly organized since adding a 3rd med time in the middle of the day. -2 for mom. Oh well. No harm no foul and at least it is not the seizure meds.

Still in shock at the IMMENSE volume of cards that appeared at our house Sunday night in particular. I think there are about 1000. I am not even kidding. They cover the whole floor. The kids have had such a great time sorting them and organizing them. We talked about Rachel's challenge, http://www.rachelschallenge.org/ Jackie's school participates in this and she brought it up. I can't believe so many people we able to do one small act for my children and it all added up to so much. I hope I can do 1/10 of the kindness everyone has shown us. Honestly, I hadn't even thought of Valentines for the girls. I got Mark a hairball card from the cats, but really that's it. Really. So, just in case anyone ever reads this, Thank you from the bottom of my heart. Ha, pardon the pun. Valentine's Day, heart....

Ooo, how could I forget... the news!! Dallas Morning news had a blip about her. Just a little update and photo of her and her bud Rebecca. The news also showed up. http://video.dallas.cbslocal.com/global/video/popup/pop_playerLaunch.asp?vt1=v&clipFormat=flv&clipId
I guess someone there is friends on Jenna's Facebook page. It is so great. I am super stoked 2/3 of my pets made it on the news!! And Beuford meowed on cue. Sweet boy.

Ack. Really? It's been a week?

My how things have changed... Jenna is coming home tomorrow!! Yay!! I am so excited my head might explode. But I am also kinda freaking out. It puts the responsibility all on my shoulders. And Mark, and everyone else who helps us, but I feel the weight squarely on me. I have also been sick, so I have missed the last 2 days she's been there. I had hoped to watch therapy a little more to learn some tricks to do here. Oh well, we'll wing it!! We're good at that.

Jenna's therapists decided she needed intensive outpatient therapy, I think so they could keep working with her, but mostly because she is making such incredible progress. I can't wait to see what being at home does for her. She is occasionally mentioning she does not want a sleepy leg, or hand anymore. It is heartbreaking, but I just reinforce with her, she can do anything she wants, even with a sleepy leg. I don't know what else to say. I don't want her to have that either, and I tell her that too. She is so strong and amazing.

It has been over a week since the bone-marrow biopsy, aspiration and still no word form the experts all over the country. I just want to know what she has, and what we are going to do about it. It has become the focus of what's next. She'll have therapy forever, but if there is something totally new I have to learn, like chemo and such, I want to get on it.

This is so like having a newborn. The seizures we came to treat are such a distant memory, It almost shocks me when people ask about them. Like, oh yeah, that's why we did all of this. Not unlike labor is how you get that squirmy newborn. And I am so ready to bring her home to see what our NEW life will be like, just like how you want to bring that baby home and be a family, but you know there's no nurse down the hall to help. It's all I have to compare it to. So, we shall see. Only one more day!!

Neuro-onc phone call.

Neuro-onc called tonight. Her results were completely normal, which rules out any terrible diseases. But, it does not tell us what she has. Or what to treat it with, or if to treat it at all. There is a chance this is a reaction to the grids that were placed in her brain to monitor her before the surgery. He has already sent out emails to "some guys" who only do histicytosis, including the Dr. in Houston. I appreciate they are taking their time and making good choices vs jumping to treatment. They want to treat her with the correct medication if they treat her at all. I want her to have the correct treatment above all else. 

In other great news, yesterday, she started moving her arm on command. She really can move it!! It is amazing. She jsut keeps doing it over and over. And she is so proud of herself. It really makes me proud of her. I can't believe she is really moving her arm and walking. But it makes me a little sad too, it is not moving like "normal." It is her new normal. But she is ok with it, and we will be too. 

She is ready to go home. She is asking about it more and more. But we are limping her through with visits from the dog and sister. I am ready to see what life is like and how we do on our own, but I am also scared. I will never be able to give her what these therapists do for her each day. I will just do my best, and that will have to do.