Oliver's next MRI is on September 14th, however, his speech has drastically gone downhill. It's very difficult to understand what he is saying now and sometimes sounds like he's slurring his speech. Just within a matter of two weeks, it's gotten worse. Ed called his doctor down in Iowa City to try and move up his MRI date, but we haven't heard back yet. We just are at a loss for what to do right now. It's so difficult watching his health slowly decline.
I've been wanting to call Hospice because I heard that they're a good resource for different things throughout the medical journey and not just the end. They provide counseling and other things as well as palliative care. We'll talk with them and start meeting with them as well as talk to the doctor and see what he has to say.
**I had a dream about Oliver last night. We were at the airport and then at Disney World, but he wasn't with us. In my dream he had recently passed away. I saw large posters of pictures I'd taken of him lining the walls at the airport and then it hit me that he wasn't there to enjoy his trip with us. It was such a real dream. Too real.
Yesterday Ed and I had Jaren and Phineas with us for lunch at Culver's. I was looking around the restaurant and realized that other people had no idea that we were talking about what to do about our dying child. End of life care... etc. This is our life. This is real and it makes me ill thinking about it. Maybe hospice could provide information about what to do with regards to cemetaries, headstones, funeral services, etc. I just have no clue about all of this and don't want to think about it. One thing I have learned is that you need life insurance for your entire family. No one ever dreams that their child with die before them, but it happens... it IS happening. Make it a priority to talk about it with your spouse. It's nearly 10,000 for a funeral. We only have 2,000 dollars for health insurance. I don't know if there are other ways financially to receive help or not. Maybe hospice would know more. No one wants to think and plan for these things, but you just HAVE to.
Anyways... we'll keep you posted on what we hear from the doctor. As it stands now, September 14th will be his next MRI date.
10 comments:
My heart is so sad for you. I will talk to my husband tonight about insurance for the kids. Great thought! One you don't want to deal with at the time. HUGS!
There are ways to cut funeral expenses. Speak with you pastor or priest and he/she should be able to help you. It's a terrible thing to have to contemplate but you will be glad later that you had some plans in place. If you need any ideas, just email me. Katshoop@gmail.com
I am praying for you all. I hate this for Oliver and for you all. I cannot imagine the way your heart hurts. You are being so strong for Oliver.
I am praying for you guys, I couldnt imagine what you are going through! No one should have to think about a funeral for their child! :( And thanks for the advice, I would have never thought about having life insurance for our kids but it is so true, it is very necessary! I'll keep checking back to hear about the MRI. Good luck!
I'm thinking of you all....and I'm PRAYING you don't have to make those kind of plans....
I'll also pray for a quicker MRI date with positive results! Miracles CAN and DO happen!!!
Love your family Stacy, I think of you guys everyday <3 I wish I could take at least some of the pain away.
I am so sorry your family is on this journey. I had a friend who lost her son recently. Children's Miracle Network paid for $5000 of the funeral expenses. There are many other resources out there. Please contact Hospice as they were a great support for her and her family. Sending prayers your way!
Stacy, I cannot even begin to know what you are going through. I am so, so sorry. Hospice was wonderful with helping me deal with how I was feeling during the last stages of my moms life. Lean on them. The were so very understanding and kind. Lots of hugs and love to you from me.
Dance Marathon will help out too! That is one of things they raise money for, contact them. Hospice will help you not only with caring for Ollie but emotionally for the whole family. Sending prayers your way!
Sending Hugs and Love your way. I hope you get to hear back from the doctor soon. My heart just aches for you guys.
Oh, Stacy! My heart just hurts for you reading this post!! It is still so fresh in my mind and my heart! Now that our battle has ended I find myself consumed and worried about everyone who is still fighting. Ugh, I am so sorry. If you ever need an ear, I am here. I will continue to pray for your family. Especially Ollie... You are a special family!
Love,
Mandy Shaw
Angel Dylan's Mom :)
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