Beyond thrilled to announce that we are taking the kids to Disney World for Robbie's Make A Wish!!
We leave in 2 days for a week!
I had always meant to announce he was approved for a wish, and then in March/April when we decided on a when I was going to announce it, but I wanted to be sure it was going to happen and not jynx anything.
Been trying to save money like crazy so that the kids can get any silly souvenir their heart desires.
I am looking forward to some amazing family time and making beautiful memories ❤
We've been telling Robbie we are going to Mickey Mouse's house, but I don't think he realizes we really are, so I can wait to see his reaction when we get there :)
Sister is a bundle of excitement and cannot wait to have the bragging rights of having been to Disney World :)
It has been amazing being home again! We still have a long road ahead of us and really need to find a new place to live. We out grew this place the moment we moved and have just continued to do so over the last 4 years here. No that Robbie and I are home, I have no room for the things that he needs that we have in Aurora. I have no room for his special chair (which is why I've gone back to a stroller, though it is not as supportive), I have no room for his gait trainer/walker, I have nowhere to put his excersaucer that allows him to stand and play and swivel (that works his core muscles). We are also still without an income as I await more information about the CNA program and how to move forward with that. I also cant just go out and get any other job as it likely wouldn't pay high enough that I could afford to hire a qualified person to care for Robbie (the idea alone gives me extreme anxiety and isn't a realistic option right now)
Any sharing of this is greatly appreciated too, I hate to continue to ask for help, but I don't have many other options at the moment.
I have to ask if you can all share this for us today. We have hit some major financial set backs and could really use some help. Robs car broke down today. He needs to be able to get back and forth to work and NEEDS to be able to get down to Aurora the one day a week he is able so he can see Robbie. We do not.presently have the means to fix Robs car no matter how major or minor the fix may turn out to be. We appreciate any and all help, even just a share would mean the world. Thank you <3
Prior to Robbie's journey, I (Ashley) was the only one in the home working. When Robbie was diagnosed April 10th, our income ceased entirely and we have no way of making up the loss of a full income for our household as I am with Robbie 24/7 and we are struggling. Hitting our goal on Robbie's GoFundMe alleviates a huge source of stress and concern for us as it enables us to pay bills, as well as catch up on things. It helps us provide groceries for two separate households (due to our family having to live 85 miles apart), gas for Robbie's numerous daily appointments that equates to about 30 miles a day. Our help resources are limited and we are struggling. Even if you are unable to help by donation, sharing Robbie's GoFundMe and his prayer page are still HUGE help. We thank you all for your prayers, support and continual words of encouragement
Chemo Round 3: Day 1
Our day begins with apple cinnamon oatmeal, a blueberry muffin, green tea, Frank Sinatra (Robbie's pick) and lots of snuggles! Nana will be joining us after church today as well. Good thoughts and prayers for our little warrior today please
Surgery for a permanent shunt has been scheduled for 745a. Lots of prayers and good thoughts please!
So. I've been told I saved Robbie's life today. This am he was very sleepy (normally up no later that 8a). He would acknowledge me when I tried to wake him, but would never fully wake, and by 1030a still hadn't woken, wouldn't drink and wouldn't fully open his eyes and had obvious change to not only his neuro status, but the right side of his face looked like it did post surgery (almost like a stroke victim). Took him to the ER, they immediately took us back, I ran through what was wrong (I thought it had to do with fluid shift). His heart rate was 58 and his temp was around 94 degrees upon intake. They took him back for a CT scan and almost immediately after Dr. Duddley showed up. He was part of our original neuro team and he said we needed to place an EVD immediately to relieve pressure as the fluid build up was even more than yesterdays MRI. His brain was literally being compacted to the right portion of his head and this much fluid could have easily caused hemorrhage. Dr. Duddley placed an emergency EVD and almost immediately over 50ml was drained. As soon as it was placed his heart rate went up and within minutes his face was back to his baseline normal again. We've been admitted to the PICU. I am unsure of how long we will be here. His oncologist said he will need a permanent shunt. Robbie is awake and alert now, drinking, talking and hungry. Prayers that we will be out of here in just a few days and that all goes well. His chemo and radiation schedule will have to be pushed back a week.
Today. We danced. He was so fill of life and light and playfulness today :) I wish I could share it with all of you. He didn't like when I tried to record him though as it caused Pandora to shut off and he just wanted music today. Days like this make me wish we had a second camera around outside my phone. He was very verbal, telling me hungry, bless you, welcome, excuse you, hold it, open it and scared me all on his own! Right arm is moving more as well!
For the first time in over a week, Robbie ate a large amount of food on his own! We removed the feeding tube and have seen a wonderful improvement in speech and took some big strides today in liquids intake! He drank 10 ounces throughout the course of today on his own! That may not sound like much to many, but for Robbie, that's huge! Prior to this he would peak at 3 ounces in a 24 hour period and the rest he needed had to be given through his feeding tube. Little steps feel like big victories here :) Next round of chemo set for May 21st!
"Promise me you'll always remember: you are braver than you believe, smarter than you think, and stronger than you seem"
Christopher Robin to Pooh
Our sweet 2 year old boy was diagnosed with a brain tumor on 4/10/14. He was perfectly healthy until January 19, 2014 when he mysteriously broke his femur walking out of a room.
- January 25, 2014 he was back in the ER with a severe rash under his cast. It was treated with antibiotics
-February 20, 2014 his spica cast was removed.
-March 20, 2014 he started complaining of belly pain off and on for most of the morning. Took him into the pediatricians and she sent us to Children's Hospital ER (2 hours away), he was diagnosed with intussusception. It' rare and it's when a portion of the intenstine telescopes into itself. Very serious, can cause death in just 2-5 days (please don't ignore colicky belly pain in your small children). The corrected the issue within air enema and sent us home.
-March 24, 2014 after a rough fever filled, sleepless weekend our PCP sent us again to children's hospital with the fear that he had an infection from the intussusception. They did an X-ray and nasal swab and determined his high fevers as due to a respitory virus (though he had no cold symptoms and never developed a cold)
-April 9, 2014 after a few good days he suddenly started to not feel well, was sitting on my lap and told me his head hur, had an episode and almost passed out (he has been complaining of headaches off and on since early Feb, could never get anyone to address the issue)Took him to local ER and they diagnosed him with an ear infection.
-April 10, 2014 I confronted our pediatrician about all these mysterious ailments in such a short time frame, told her that I wanted answers and she agreed it was abnormal and was concerned about the headaches. He tested positive for strep throat while we were there. She consulted a neurologist and the requested we come down to childrens for a CT scan on his head and bloodwork. CT scan showed a tumor. He was admitted into the PICU at children's.
-April 11, 2014 they did an MRI on his brain and spine. The tumor is a little over 4cm and located in the front left part of his brain. It has not spread into his spine nor anywhere else in is brain, but the tumor is large and the neurologist doesn't feel this can be corrected by surgery alone. The have scheduled his surgery for Thursday, April 17th.
The outcome and follow up have yet to be seen, but we have been told our stay here will be lengthy. We have a 10 year old daughter who is unable to stay in the PICU with us and has needed to stay in a hotel with a relative in from out of state while we wait for an available room at the Ronald McDonald house. We need help to be able to stay here and care for our son with as little distraction as possible. It is not reasonable nor affordable to make to one way 2+ hour drive daily to see our son and neither of us is comfortable leaving him right now either. As hos comfortis hard to maintain right now. Even if you can just donate a small amount it makes a huge difference for us. Please think good thoughts for our son.