Well, today my little guys turns 5! This is such a happy day. He is feeling and doing great. He has a big birthday party this weekend and we have hired a magician who performed for the kids up at LPCH. Its going to be awesome! Last week, we went out one evening for a family photo shoot. A couple of mom's that I know, one who is also a cancer mom, had offered to do this at no charge and I just couldn't resist! This turned out to be the perfect time, Ashton's b-day and his end of chemotherapy treatment. I wanted to share a slide show one of the mom's made. She just sent it today and I can't get over how much I love it.
http://michelleriddlephoto.com/gillin/
When you watch this, make sure you turn the volume up to hear the music.
It truly is special.
Wednesday, April 14, 2010
Tuesday, March 30, 2010
Great news!
I wanted to let everyone know, who isn't on facebook, that Ashton's MRI was all clear! We are so happy!
Please continue to pray for our friend Jacob Grillo. He is having an emergency MRI of his spine today and will undergo brain surgery on Friday to get the tumor they just found out.
Thank you!
Please continue to pray for our friend Jacob Grillo. He is having an emergency MRI of his spine today and will undergo brain surgery on Friday to get the tumor they just found out.
Thank you!
Thursday, March 25, 2010
MRI tomorrow
Ok everyone.....PT's and prayers are needed. Ashton will be having his MRI tomorrow at 3pm. I have been feeling so great about it. He has been doing so good and hasn't given us any reason to worry, but about an hour ago, we heard some terrible news which has pretty much slapped me in the face and made me realize to NEVER let my guard down.
When Ashton was first diagnosed, when he was still in the ICU after surgery, we were introduced to a wonderful family who happened to be waiting for their baby boy to finish his follow up MRI. They were the first people we talked to who had a child with a brain tumor and I felt the need to latch onto them...they looked so calm because they had already been through the worst, Jacob was tumor free and doing great. He had a different type of tumor and was diagnosed about a year before Ashton. A couple of times our boys would have their MRI on the same day so we would have a chance to catch up. But for some reason, our schedules have been slightly off and we have missed each other. Well, Jacob's MRI was today and we just heard that his tumor is back. There were no signs....we don't know yet what their next step is but let me tell you, this family is the greatest. They helped us so much. Their names are John and Sandy Grillo and Jacob is their son. PLEASE pray and send positive thoughts.
You never know what tomorrow may bring......
When Ashton was first diagnosed, when he was still in the ICU after surgery, we were introduced to a wonderful family who happened to be waiting for their baby boy to finish his follow up MRI. They were the first people we talked to who had a child with a brain tumor and I felt the need to latch onto them...they looked so calm because they had already been through the worst, Jacob was tumor free and doing great. He had a different type of tumor and was diagnosed about a year before Ashton. A couple of times our boys would have their MRI on the same day so we would have a chance to catch up. But for some reason, our schedules have been slightly off and we have missed each other. Well, Jacob's MRI was today and we just heard that his tumor is back. There were no signs....we don't know yet what their next step is but let me tell you, this family is the greatest. They helped us so much. Their names are John and Sandy Grillo and Jacob is their son. PLEASE pray and send positive thoughts.
You never know what tomorrow may bring......
Monday, March 8, 2010
Tube free!
I'm sorry for taking so long to update. Ashton had his surgery 2 weeks ago and is doing great! I am happy to say he is officially tube free! The surgery went well, but I have to say, I wasn't that prepared for afterward. As soon as Ashton woke up he was in pain. He didn't even have time to notice or be excited about the tube being out of his nose because now he had a big strange button sticking out of his belly! It hurt him a lot. We knew we were going to stay the night in the hospital, but it turned out he needed to stay 2 nights. This hospital visit was very disappointing for me and my whole family. I will try and start at the beginning...
As soon as he woke from the procedure he was in pain. They gave him something for it while he was under, but he needed more very quickly. It took 2 full hours before the orders got written correctly to give him the medication. There was some mix up with what type to give, I.V. or orally, because they didn't want any thing in his stomache. There was just a big lack of communication and I didn't feel that our nurse was helping. It was VERY hard to watch Ashton hurting. I thought that after all he had been through this past year, radiation, Chemo, and brain surgery, that it was ridiculous he should suffer from such a simple procedure in comparison. But he did, and I filed a complaint. Also, I was under the impression he would be getting any other medications he takes at home while he was there. He mainly just takes Zofran for Nausea still. We are trying to wean him off because he still gets sick if we take it away completely. Well, our nurse's opinion was that if he doesn't have any food in his stomach then he didn't need the Zofran. I had to explain that the nausea comes from his brain surgery and also from cutting him off cold turkey. Pat and I were feeling that we should have brought our own stuff from home, it was so difficult to get it! So needless to say, I was frustrated. Also, I had no idea Ashton would vomit up pretty much everything he took in for two days! I guess this doesn't happen to every one. And he would vomit blood, very scary! At one point I though to myself, what did we do??? I wished we had just left the NG tube in his nose, this was so awlful. But as the days went on and we were released to come home, it got better. I love it now and he loves it too! When he isn't eating, he doesn't have any tubes dangling and getting in the way. It is very nice! He still isn't interested in eating on his own, but I'm hopeful it won't be long. He is wanting food in front of him more and more. He asks for things and has even licked a graham cracker and got some crumbs in his mouth and hasn't spit them out. That is huge!
The other procedure he had done was to remove his port. This was the central line where all of his chemo and other medications were given. It used to stick out of his chest so much that his scar from the surgery had strectched and was quite big. The doctors fixed that when they took it out and now he has a nice thin scar. This was a huge milestone for us, one we couldn't wait for. It was great! We also got rid of a bunch of his left over medication and supplies. The nursing staff will sometimes travel to South America to treat children and the medication we gave them will be used over there. We also got rid of all of the home health care nursing supplies....we gave them back to the nurse who cared for Ashton and she will use them and was very grateful for them. Getting this stuff out of the house was a big step. I was a little unsure because I worry about the big "what if" and will we need them again some day? But, Its healthier for me to think we won't. And deep down, that's what I believe.
So, next up is the MRI...ugh. It is scheduled for Friday the 26th. I will let everyone know how that goes.
As soon as he woke from the procedure he was in pain. They gave him something for it while he was under, but he needed more very quickly. It took 2 full hours before the orders got written correctly to give him the medication. There was some mix up with what type to give, I.V. or orally, because they didn't want any thing in his stomache. There was just a big lack of communication and I didn't feel that our nurse was helping. It was VERY hard to watch Ashton hurting. I thought that after all he had been through this past year, radiation, Chemo, and brain surgery, that it was ridiculous he should suffer from such a simple procedure in comparison. But he did, and I filed a complaint. Also, I was under the impression he would be getting any other medications he takes at home while he was there. He mainly just takes Zofran for Nausea still. We are trying to wean him off because he still gets sick if we take it away completely. Well, our nurse's opinion was that if he doesn't have any food in his stomach then he didn't need the Zofran. I had to explain that the nausea comes from his brain surgery and also from cutting him off cold turkey. Pat and I were feeling that we should have brought our own stuff from home, it was so difficult to get it! So needless to say, I was frustrated. Also, I had no idea Ashton would vomit up pretty much everything he took in for two days! I guess this doesn't happen to every one. And he would vomit blood, very scary! At one point I though to myself, what did we do??? I wished we had just left the NG tube in his nose, this was so awlful. But as the days went on and we were released to come home, it got better. I love it now and he loves it too! When he isn't eating, he doesn't have any tubes dangling and getting in the way. It is very nice! He still isn't interested in eating on his own, but I'm hopeful it won't be long. He is wanting food in front of him more and more. He asks for things and has even licked a graham cracker and got some crumbs in his mouth and hasn't spit them out. That is huge!
The other procedure he had done was to remove his port. This was the central line where all of his chemo and other medications were given. It used to stick out of his chest so much that his scar from the surgery had strectched and was quite big. The doctors fixed that when they took it out and now he has a nice thin scar. This was a huge milestone for us, one we couldn't wait for. It was great! We also got rid of a bunch of his left over medication and supplies. The nursing staff will sometimes travel to South America to treat children and the medication we gave them will be used over there. We also got rid of all of the home health care nursing supplies....we gave them back to the nurse who cared for Ashton and she will use them and was very grateful for them. Getting this stuff out of the house was a big step. I was a little unsure because I worry about the big "what if" and will we need them again some day? But, Its healthier for me to think we won't. And deep down, that's what I believe.
So, next up is the MRI...ugh. It is scheduled for Friday the 26th. I will let everyone know how that goes.
Tuesday, February 16, 2010
Surgery Friday!
Ashton had his upper G.I. done this morning and it went really well. He did such a good job and it only took a few minutes to get all the info. they needed. They could see that there were no problems going on with his system, everything looked great. So, after he had the GI, we had a bunch of time to kill before we had a short exam with his doctor. The exam wasn't a "planned" one, I had some concerns that I wanted her to check, and everything was fine. But before we had that checkup, we got to go to the playroom and see some people that we haven't seen in a long time. It felt good to see them, like seeing old friends. I get a sense of comfort when I walk in the hospital.....Its strange because I am so glad to not be spending most of my time there anymore, but at the same time, there are memories and people who understand which makes it feel welcoming.
So, during Ashton's exam with the doctor, she let us know that Ashton could have his G surgery this Friday! I'm so happy! Besides the G tube, he will be getting his port removed. The only thing that wont happen is the Botox to the eye muscle. His eye doctor is out of town so he will just have that done with the next MRI, which is already scheduled for March 22nd. Ashton will need to stay overnight in the hospital for at least one night to make sure his new tube works well and all is ok. I'm so excited for these procedures. I have a feeling that this will help Ashton to want to eat on his own. Keep him in your thoughts everyone! Thank you!
So, during Ashton's exam with the doctor, she let us know that Ashton could have his G surgery this Friday! I'm so happy! Besides the G tube, he will be getting his port removed. The only thing that wont happen is the Botox to the eye muscle. His eye doctor is out of town so he will just have that done with the next MRI, which is already scheduled for March 22nd. Ashton will need to stay overnight in the hospital for at least one night to make sure his new tube works well and all is ok. I'm so excited for these procedures. I have a feeling that this will help Ashton to want to eat on his own. Keep him in your thoughts everyone! Thank you!
Tuesday, February 2, 2010
The latest
Wow, it has been quite a while since I have updated! Not too much has been going on, just living a somewhat normal day to day life. Ashton continues to have Physical therapy and is doing so great! Just last Thursday he went up and down the stairs by himself, which is HUGE! Its amazing how far he has come in just the last few months.
We are waiting to hear some dates of up-coming procedures. First, the dr.s want him to have an upper GI, just to rule out any other reasons he may not want to eat...reasons besides the chemo. Once that is all taken care of, we are hoping to have his NG tube placed into his stomach, which is just called a G tube. This way he won't have the tube in his nose bothering him. The G tube is more permanent, but also temporary. While he is under he will actually have 3 procedures done. 1, the G tube. 2, have his port removed, yea!. And 3, get botox on the stronger muscle in his left eye. We are so looking forward to these procedures! We are planning to start him in preschool in April, with a bunch of visits in March, and we would love to have all of this completed by then. These are big steps forward for us!
Ashton has another hearing test coming up at the end of this month. We are hoping everything is still stable. His last eye appointment was a good one, he can see perfectly. He just needs to get his eye straight.
So, that's all for now. I will update once we get the date of surgery! I'm so happy he is doing so well!
We are waiting to hear some dates of up-coming procedures. First, the dr.s want him to have an upper GI, just to rule out any other reasons he may not want to eat...reasons besides the chemo. Once that is all taken care of, we are hoping to have his NG tube placed into his stomach, which is just called a G tube. This way he won't have the tube in his nose bothering him. The G tube is more permanent, but also temporary. While he is under he will actually have 3 procedures done. 1, the G tube. 2, have his port removed, yea!. And 3, get botox on the stronger muscle in his left eye. We are so looking forward to these procedures! We are planning to start him in preschool in April, with a bunch of visits in March, and we would love to have all of this completed by then. These are big steps forward for us!
Ashton has another hearing test coming up at the end of this month. We are hoping everything is still stable. His last eye appointment was a good one, he can see perfectly. He just needs to get his eye straight.
So, that's all for now. I will update once we get the date of surgery! I'm so happy he is doing so well!
Friday, January 1, 2010
Happy New Year
I have never been more happy to say goodbye to a year and get on with a new one. Good riddance 2009! Here's to a much better, healthy, and happy year.
There is something that has made me incredibly sad and I'm hoping I can get some of you to help. Some friends of ours, I mentioned them before, have lost their baby girl not even a month ago. They would like to hold a service for her and put her to rest properly, but due to the fact that she has been in the hospital for the last year they couldn't work because they needed to care for her and her older sister.
They are asking for help to pay for the memorial. This is a great family who we had the honor of meeting while in the hospital. Their hearts are broken and are in need. Please read Tootie's story and if you can, donate to her. I'm attaching her caringbridge page. Please be aware though not to click the donate button on the page. That will send donations to caringbridge to run the site. This is a good cause as well, but it won't go to the family. The best way is to send a check to the address at the bottom of the last journal entry. Thank you so much!
http://www.caringbridge.org/visit/tootieisamiracle/journal
There is something that has made me incredibly sad and I'm hoping I can get some of you to help. Some friends of ours, I mentioned them before, have lost their baby girl not even a month ago. They would like to hold a service for her and put her to rest properly, but due to the fact that she has been in the hospital for the last year they couldn't work because they needed to care for her and her older sister.
They are asking for help to pay for the memorial. This is a great family who we had the honor of meeting while in the hospital. Their hearts are broken and are in need. Please read Tootie's story and if you can, donate to her. I'm attaching her caringbridge page. Please be aware though not to click the donate button on the page. That will send donations to caringbridge to run the site. This is a good cause as well, but it won't go to the family. The best way is to send a check to the address at the bottom of the last journal entry. Thank you so much!
http://www.caringbridge.org/visit/tootieisamiracle/journal
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