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Post by gar on Jun 12, 2018 8:20:26 GMT
Hugs Mum! I’ll just second what others have said - you in no way failed at anything for Spencer, truly.
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Post by garagesaler on Jun 23, 2018 3:29:25 GMT
So sorry to read this latest update. You are doing a great job. You are Spencer’s greatest gift, advocating for him constantly. I make puréed foods for my hubby all of the time. He has ALS, Lou Gehrig’s disease. I can pureee most things we eat. He says the food tastes the same. It is just less work to eat it, and he does not have to worry about choking on it. Spencer will learn to adjust. There are so many things that can be puréed for him.
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theshyone
Pearl Clutcher
Posts: 3,410
Jun 26, 2014 12:50:12 GMT
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Post by theshyone on Jun 23, 2018 4:21:47 GMT
You are a great mom. The hospital has once again let you down. Really. Really!!!! Really!!!!!! Huge hugs. I'll be down there on the 10th, we should have coffee.
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Post by destined2bmom on Jun 23, 2018 21:38:56 GMT
Huge hugs! You ARE NOT a bad mom. You are an absolutely fabulous mom with a very sick son.
And you have been and are an amazing advocate for him; and for always being there for him. I know this is a heartbreaking setback; but you will persevere and so will Spencer.
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Post by mom on Jun 24, 2018 1:54:42 GMT
I am so sorry - I am just seeing the latest update and my heart hurts for you. You HAVE NOT FAILED your son. You've given him all you could give, and went above and beyond.
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purplebee
Drama Llama
Posts: 6,729
Jun 27, 2014 20:37:34 GMT
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Post by purplebee on Jun 24, 2018 12:59:56 GMT
You are an awesome Mom, so please lose any guilt you may be feeling about this latest development. It is not your fault! What iS your fault is that Spencer is still here with you due to the unrelenting, tiger mom care you have given him. He is is a better place right now, even with the discouraging nerve issue, because of YOU!
Hugs and prayers for continued healing.
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Post by garagesaler on Jul 6, 2018 1:18:43 GMT
Thinking of you and Spencer, and praying for you both.
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Post by LavenderLayoutLady on Jul 6, 2018 2:21:24 GMT
I just read the latest update.
You are a wonderful mother!! In no way are you responsible. Spencer is alive because of you, several times over.
Yes, it is normal to feel sorrow at the thought of not eating solid food again. But there is still hope in other things. Not to sound silly, but with a Vitamix blender, he could have hundreds of different varieties of smoothies, protein shakes, and milkshakes. And yes, he can eat all other foods, pureed.
I cannot say enough how much I admire you, and how good of a mom you are.
Big (((Hugs))) for you and Spencer both.
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Post by SweetieBugs on Jul 6, 2018 4:13:32 GMT
I'm keeping you, Spencer and your family in my thoughts.
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Post by sunnyd on Jul 11, 2018 15:28:43 GMT
Thinking of you and Spencer and hoping things are going well!
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Post by jenn on Jul 11, 2018 16:03:03 GMT
Miss your posts. Sending love.
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Post by fuji on Jul 11, 2018 19:09:14 GMT
I hope all is well!
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inkedup
Pearl Clutcher
Posts: 4,837
Jun 26, 2014 5:00:26 GMT
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Post by inkedup on Jul 11, 2018 19:33:43 GMT
I hope Spencer is doing as well as possible and that you are okay. <3
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RedSquirrelUK
Drama Llama
Posts: 6,733
Location: The UK's beautiful West Country
Aug 2, 2014 13:03:45 GMT
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Post by RedSquirrelUK on Jul 11, 2018 19:53:00 GMT
Yes, thinking of you here as well.
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Post by garagesaler on Jul 15, 2018 3:31:27 GMT
Just thinking of you and Spencer. Please update us when you have time. Keeping you in prayer.
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Post by gar on Jul 15, 2018 13:50:45 GMT
I hope all is going ok for you both
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Post by christine58 on Jul 15, 2018 14:05:11 GMT
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Post by grammadee on Jul 15, 2018 14:45:17 GMT
Glad you asked. I have been wondering, too.
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rodeomom
Pearl Clutcher
Refupee # 380 "I don't have to run fast, I just have to run faster than you."
Posts: 3,660
Location: Chickasaw Nation, Oklahoma
Jun 25, 2014 23:34:38 GMT
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Post by rodeomom on Jul 15, 2018 14:55:46 GMT
Thinking of y'all, hope things are going better.
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momto4kiddos
Drama Llama
Posts: 5,151
Jun 26, 2014 11:45:15 GMT
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Post by momto4kiddos on Jul 15, 2018 16:59:16 GMT
Been wondering about them too! Hope everything is ok with them.
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Post by scrapmaven on Jul 15, 2018 17:05:08 GMT
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jrlggrits
Shy Member
Posts: 13
Jul 15, 2018 16:43:16 GMT
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Post by jrlggrits on Jul 15, 2018 17:05:23 GMT
Joining the others here to send many prayers your way
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Why
Drama Llama
Posts: 6,136
Jun 26, 2014 4:03:09 GMT
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Post by Why on Jul 20, 2018 7:28:11 GMT
Thinking of you and sending hugs, prayers and caring thoughts.
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Post by garagesaler on Jul 24, 2018 3:09:50 GMT
Thinking of you and Spencer, and praying for you. Please update us when you have the time and energy to do so.
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theshyone
Pearl Clutcher
Posts: 3,410
Jun 26, 2014 12:50:12 GMT
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Post by theshyone on Jul 24, 2018 5:58:32 GMT
Thinking of you.
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Post by kkrenn on Jul 24, 2018 6:51:03 GMT
I check everyday to see if there are any updates. Please stop in and let us know how you and Spencer are doing, we miss you!
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Post by malibou on Jul 24, 2018 14:48:13 GMT
I continue to keep you in my thoughts.
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Post by SweetieBugs on Jul 24, 2018 15:37:28 GMT
Has anyone heard from Canadianscrappergirl? I'm so worried about her and Spencer. It's been such a long time since she has logged in. My heart has gone out to her this whole time and I know she has been through so many trials. It seemed like the finish line was coming close but yanked further back each time.
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Post by cadoodlebug on Jul 25, 2018 4:54:35 GMT
She's online right now, hopefully to give us an update. We're here for you.
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Post by canadianscrappergirl on Jul 25, 2018 5:02:32 GMT
Hi everyone I'm so sorry I have been MIA I have been in a real funk. My depression and PTSD has been kicking my butt. I feel so bad that I've ignored you all, each day I would say to myself ok Kathy you should go on 2 peas and as much as I wanted to I couldn't do it. I'm not sure why it was. Whether I feel I'm not worthy of concern or just a lack of energy I'm not sure. I think I'm just feeling overwhelmed and my body is playing catch up I've been so tired. My sleep patterns are all screwed up as well. I've started to just drive back and forth and not stay in the hotel. I found I wasn't sleeping well there and having some anxiety and the hotel bills were becoming overwhelming. June was an expensive month I got pulled over for running a red light it was a BS ticket. The light was green but traffic was slow to clear the intersection because of a lane closure. I was pulled up past the stop line and a bit into the intersection. The light turned yellow and there was room for me to move so i started ahead but a car who was in the turning lane turned and by the time he turned it was red and I had no choice but to go. I started crying and the cop felt a bit sorry for me I guess he gave me a lesser ticket. I was on my way to see Spencer. I had considered telling him my story as my BIL is also a city cop but didn't. I should have because in the mail that same week was a photo radar ticket of me running a red light late one night when Spencer was really sick in May. The scary thing is I honestly don't remember running that light and it was obviously red I'm thankful I didn't get hurt or kill someone. That same week as I was on Deerfoot a busy 6 lane road I got a huge ding on my windshield and a crack that's over a foot long UGH and the other day another ding. Hubby had to sell his truck it was having major engine issues he lost money on it. Bought a older vehicle and got hosed he just replaced the brakes. Our older weiner dog scratched her eye and barely avoided surgery. Yeah June sucked LOL. I have been trying to make an album for each of my boys they are a pocket page/project life type one. I had started them last year before Spencer got sick. I have over 8 boxes of pre digital photos that I have been scanning. I find this project a bit overwhelming but I think it's kind of been healing for me too. It's tough seeing photos of Spencer pre brain injury but it's brought back so many lovely memories too! My boys are really excited to see the albums as they have never really seen most of the photos. Once I'm done those I need to tackle the mess of digital photos on my laptop that are so unorganized. I haven't been able to see my therapist for weeks. The one I had been seeing moved to a different hospital to do a research project. I've only met the new one once briefly during my therapist's last day. I had an appointment but had to cancel it because Spencer was sick. When she called to rebook she said I would probably only have a few more therapies. That really upset me as my former therapist felt I needed st least another 6 months. I quit taking my meds for awhile and that has contributed to my struggles. I hate the side effects of them. Every day something will trigger me to cry or take me back to that day back in August. I hate that I can't go without being sucked down into a crappy place and when I feel crappy I feel guilty because it isn't about me. Ok enough about me. Spencer celebrated his 23rd birthday on June 15th! The staff really helped to make his day special! We got him a DQ icecream cake and some gifts and decorated the dining room. I printed some photos and got some nice frames to decorate his room. Also put some in a small album for him. Spencer has been adjusting to the fact he can no longer eat solid food. His music and art therapy as well as talking to a therapist have helped him a lot. I think he is adjusting better than I am. I've been blending some dishes he likes and bringing them to the hospital he has been enjoying that! He's been giving me requests too. He got sick 2 weeks ago was throwing up, complained of a very sore neck and had a fever. They did a bunch of blood work etc and he ended up having a UTI. He seems to get very ill with them and it's always a worry. He had a checkup a few weeks ago with his neurosurgeon and he was very happy with how the shunt is working. He said that Spencer will have to be monitored closely to make sure everything is working ok. He also felt that Spencer will never be able to eat solid food again. He has an appointment with a special dentist in September to look at possible elastics to maybe help with eating. We've noticed that his short term memory is pretty much nonexistent he is very forgetful and needs lots of reminders and repeats himself a lot. He has also developed some OCD behaviors. We have brought Boomer a few times for a visit the nurses love him and make a big fuss over him and Spencer. Last visit they had a pillow waiting with his name on it LOL. I had shared that we were looking into what's involved in the proceess of finding group home placement. Spencer has been very gung ho about it. The unit social worker has been great in helping us start the process. So we had a meeting with a PDD worker (persons with developmental disabilities) to learn more about Spencer and hear what kind of funding we could get. She said crazily enough there was an opening at a group home in Calgary that she felt was great for meeting his needs. She said homes that cater not only to individuals in wheelchairs but also complex medical needs are fewer and a space in those are rare. We had another meeting with the medical staff, a complex medical needs worker from PDD and a coordinator from the group home. The staff went over his medical issues and the people from PDD and the home went over what type a of funding and programs he could have access to. I literally teared up as they talked because I just see this as such an opportunity for Spencer. As they talked the social worker and the medical staff teared up as well. For the past 340 some days I have questioned God and myself and asked why Spencer. As I sat in that room I thought maybe this is why. If this hadn't happened he'd still be at home isolated and living a life so not in tune with what he needed. Last summer before this happened we saw how isolated he was becoming. He was becoming more and more withdrawn. Living where we are we would never have had a chance at a home in Calgary. We went and toured the house and to meet the owner. Spencer loved the house and we did too. They feel Spencer will be a great fit for the house and the other clients. I was so happy to get that call!! Had they not felt it was a good fit we could be in the hospital for months before another placement came up. He has to have a Calgary address in order to get in the system. He was so exexctied he was calling his brothers and telling all the staff LOL! The next steps are applying for the funding. They can only apply on a certain day of the month and that is in early August so the earliest we could be moving to the group home is early September! We are also setting up a few dinners for Spencer and us to meet the staff and other clients. His roommates would be 2 men they are older but one loves hockey and the other lives board games 2 things Spencer adores! I am so so happy for Spencer he really deserves good things! On Sunday we were able to take him out for a few hours to a movie we went and saw Incredibles 2. He loved it but you could tell he was nervous about being out of the hospital setting. After the group home visit we stopped at a mall for icecream and he was anxious to get back even though we had offered to stop at a few stores he likes. Next weekend we are hoping to take him home for the day. He is excited to see our 4 dogs and to have a fire with his dad. I don't know if it's a glitch with the tap and talk app but I notice that sometimes when I read and like your posts it won't show the likes the next time I'm posting. Please know I do read all your posts and I can feel your love and support!! Love to you all!! Photo is of Spencer at the mall!
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