By Stephanie
It looks like we are coming home tomorrow. Yay! So tumor board met today, the pathology shows that it is a pilocytic astroctoma. Not as rare as the other, but still rare.
We still don't know if her pituitary gland is working. And she will have lots of follow up appointments here over the next few months. Another MRI in three months. She is also having some small seizures that neurology should be meeting with us about.
Now we just need to get with the school to figure out what she needs there.
8.31.2011
8.30.2011
Pics of Avery
By Stephanie
Home for the night.
These are from Sunday to today in order
this was earlier today. She is finally looking like my little girl. Mouth open sleeping and all…
Spoiled
I love food. That is why I learned to cook. And I do make some yummy things, if I do say so myself. That might be a problem for my kids. Especailly when they are in the hospital and turn their nose up at most of the things they are served. I agree that the freezer burnt chicken nuggets and soggy waffles don't look good to me either. But if I were really hungry, I might eat them. But not Avery. She just scowls and conplains...a lot. I know the steriods make her even more tempermental, but sheesh. Enough alreay. I was able to get her some frozen dinners and soup. That seems to be filling in some of the gap. But they all better learn to cook or marry chefs.
Btw, she had another rough morning. She started off the day throwing up. Yuck! I think she waited too long after her meds to eat. Right after she threw up, she ate. Weird. And of course it was bacon, sausage and toast. (I am seriously considering making using bacon as a bribe at home. It is obviously highly desired.) But then she slept for the rest of the morning. She did get up about 11am and have a SHOWER! She loved it. We were even able to wash her hair as long as we didn't scrub the incision area (it has about 100 stitches...not joking. Really 100 stitches). She was complaining about an area to the back of the top of her head that had some dots of blood. She said it was really sore. I asked one of the dr's and she said it is probably from staples. To ensure the area stays clean and sterile they put a plastic drape over her hair and secure it with staples. Wow, interesting. I would take staples over shaving half her head or all her head any day. They are thinking we MIGHT can come home on Thursday. But it depends on her progress. And even if we do the next month to month and a half will be LOTS of follow up appointments back here. Therapists, Opthomolgists, Oncologists, Endocronologists, Neuro-Surgeons too. (and I probably spelled them all wrong...)
Btw, she had another rough morning. She started off the day throwing up. Yuck! I think she waited too long after her meds to eat. Right after she threw up, she ate. Weird. And of course it was bacon, sausage and toast. (I am seriously considering making using bacon as a bribe at home. It is obviously highly desired.) But then she slept for the rest of the morning. She did get up about 11am and have a SHOWER! She loved it. We were even able to wash her hair as long as we didn't scrub the incision area (it has about 100 stitches...not joking. Really 100 stitches). She was complaining about an area to the back of the top of her head that had some dots of blood. She said it was really sore. I asked one of the dr's and she said it is probably from staples. To ensure the area stays clean and sterile they put a plastic drape over her hair and secure it with staples. Wow, interesting. I would take staples over shaving half her head or all her head any day. They are thinking we MIGHT can come home on Thursday. But it depends on her progress. And even if we do the next month to month and a half will be LOTS of follow up appointments back here. Therapists, Opthomolgists, Oncologists, Endocronologists, Neuro-Surgeons too. (and I probably spelled them all wrong...)
8.29.2011
nook and avery
By Stephanie
Avery had a rough morning. She was seeing double...not good. And she had a headache that wouldn't go away. They took her in for a cat scan and it came out fine. Oh she also had a low heart rate and 99 degree fever. She hardly ate any breakfast...no bacon. But for lunch she got pizza, chicken nuggets and fries. She ate it all. She had a good afternoon and Grandpa Dave came and sat with her so i could get out...into the sunshine.
AND I am sending this from my new nook. Thanks to my AMAZING friend Kathy. I don't know how I am so lucky to have such great people in my life!
Avery had a rough morning. She was seeing double...not good. And she had a headache that wouldn't go away. They took her in for a cat scan and it came out fine. Oh she also had a low heart rate and 99 degree fever. She hardly ate any breakfast...no bacon. But for lunch she got pizza, chicken nuggets and fries. She ate it all. She had a good afternoon and Grandpa Dave came and sat with her so i could get out...into the sunshine.
AND I am sending this from my new nook. Thanks to my AMAZING friend Kathy. I don't know how I am so lucky to have such great people in my life!
8.28.2011
Aaaahhh…sleep
by Stephanie
The adrenaline of the first few days in a hospital were wearing off. So I came home with the other kids and my in-laws. For the first time (ever) I was happy I didn’t wake up to sun. Because it would have had me up before 7am. So it allowed me to sleep in. Yeah!
For those of you who have ever had a baby, you know about that “crash”. The first day you keep waking up just to see that baby, make sure it wasn’t a dream. The second day you keep waking up just to make sure it’s still breathing. The third day (usually when they send you home) you sleep so deeply you don’t hear the baby the first time. You are SO tired. That was the point I was out. So I am really happy to have had eight, blissful, uninterrupted hours of sleep. And a shower…a full good shower that I was able to scrub the hospital smell off.
As much as everyone wants to see her…she is really out of it. Plus she is still in ICU. They discourage visitors. But you can send an e-greeting. Click here. You can also send her stuff from the gift shop, however she had some great drugs right now and she can’t get flowers or balloons in ICU. Better yet, do something for her brother and sisters. They are the ones totally aware of what is going on. And prayers. They are amazing and do more for us than I can express. Trust me we have angels both here and on the other side that have been hard at work on our behalf. We really are so blessed.
Oh btw, one of her neuro-surgeons said after her MRI yesterday that they got about 60% of the tumor. But it was the part that was effecting her vision. The rest might die off (hopefully) with that main part gone, or might begin to grow again. But it is very slow growing and may not effect her for years if ever. They will just have to monitor it and see.
8.27.2011
Pics of Avery
by Stephanie
I am home for the night, so I thought I would share some pics…they are graphic so if you are prone to queeziness, don’t continue. And she is VERY irritable. Probably the steroids. Luckily her dad can deal with her tonight. Because I am going to SLEEP!
First day…
later…..
enjoying bacon…
poor eye….obviously asleep
Bacon and bacon and bacon
have you every seen the movie "50 First Dates"? I feel like that is what I have been doing for the last 36 hours.
Avery will wake up and start asking questions
Avery: did they drill the hole?
me: yes
Avery: what time is it?
me: I will tell her the time
Avery: Can I have bacon?
me: no not yet
she gets upset
Avery: when can I have bacon?
She also would ask other things about where we are, what day is it, where is Nathan, ect.
I would go over it all. She would get a headache, and push her button for more meds, go to sleep and in a few hours we would do it ALL over again. But she is getting more responsive and her site seems to be getting better. Althought that right eye (her good one) is still swollen shut and will be for a few more days.
The one surgen stopped by. After reviewing her scans they got 60% of the tumor and where it is left are areas they couldn't get to or wheren't critical. They will probably just watch her closely over the next few years and then maybe with an annual MRI to watch for any changes. If there is, probably another operation. They still feel like this can't be treated with radiation or chemo.
Thanks again for everything you all are doing!!
Avery will wake up and start asking questions
Avery: did they drill the hole?
me: yes
Avery: what time is it?
me: I will tell her the time
Avery: Can I have bacon?
me: no not yet
she gets upset
Avery: when can I have bacon?
She also would ask other things about where we are, what day is it, where is Nathan, ect.
I would go over it all. She would get a headache, and push her button for more meds, go to sleep and in a few hours we would do it ALL over again. But she is getting more responsive and her site seems to be getting better. Althought that right eye (her good one) is still swollen shut and will be for a few more days.
The one surgen stopped by. After reviewing her scans they got 60% of the tumor and where it is left are areas they couldn't get to or wheren't critical. They will probably just watch her closely over the next few years and then maybe with an annual MRI to watch for any changes. If there is, probably another operation. They still feel like this can't be treated with radiation or chemo.
Thanks again for everything you all are doing!!
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