aruth5000 Posted August 26, 2018 Report Share Posted August 26, 2018 My little one has yet again had more medical stuff come up. He is now back into pull-ups full-time and can't control his bowels at all. He'll be 5 next month and was out of pull-ups completely for the last year, except at night. He is literally having 10 or more poopy pull-ups a day. Come to find out he has a prolapse.... A prolapse at 5??? I feel like every single time we start making really good strides and improvement we are literally knocked right back down. The worst part of this all is I can't literally can't take time off to be with him for appointments and possible surgeries coming up in the next few weeks. I have to rely on others around me to take him. It sucks because I am not there, not sure if all my worries are being relayed properly or if he is being advocated for like I would. It sucks and I hate it. Being a single parent of a special needs child is a constant struggle. Don't get me wrong I love him and am so blessed to have him in my life! But, it's extremely hard. Feel like I am drowning between his medical stuff and opening a small cafe in a call center last year with my best friend. It's hard to stay afloat when everything around you is trying to sink you. Sunday21 1 Quote Link to comment Share on other sites More sharing options...
Guest LiterateParakeet Posted August 27, 2018 Report Share Posted August 27, 2018 I think being a mom is hard in general, and then some moms like you have added challenges to deal with. Yikes, you have a lot going on. Your stress-o-meter must be off the charts. I'm so sorry. I will remember you in my prayers, I don't know your name, but the Lord knows who you are nonetheless. Lean on Him. He will give you both the strength you need to get through this. I am certain that ministering angels, family on the other side of the veil, are helping as well. As much as it might feel like it, you are not alone. Hang in there. Quote Link to comment Share on other sites More sharing options...
Backroads Posted September 6, 2018 Report Share Posted September 6, 2018 Ah, prolapses. I'm sorry. Quote Link to comment Share on other sites More sharing options...
Iggy Posted September 6, 2018 Report Share Posted September 6, 2018 @aruth5000 I also know you from your FB page with another moniker - you & that adorable little dude of yours, have One Heck Of An Amazing Support Group! AND they all have been with your and Lil Dude since the moment he was born! He is quite the fighter - if he was not, he would have gone to be with Heavenly Father a long time ago. I also believe that Heavenly Father has a great and special mission for him [your son] to do. I believe that Lil Dude knows this, deep in his *heart of hearts*, that is maybe why he IS the great fighter for life that he is. Yes you are facing and fighting trials more than the *Average Bear*, but Sweetie, you have way more than the *Average* support group. If you didn't hand over Lil Dude to your support people so that you could work and make the money needed to provide for him, you would totally collapse. Perhaps you and Lil Dude might be in need of a Priesthood Blessing, to calm and reassure you. To ask for healing and protection for your darling little boy. Goodness, he is 5 already! It seems like just a little while ago he was born. The little boy with more hair than any child deserves to have, especially at birth. I was so used to my siblings children who were born nearly bald!! Your and Lil Dude are in my prayers, always. aruth5000 1 Quote Link to comment Share on other sites More sharing options...
aruth5000 Posted September 23, 2018 Author Report Share Posted September 23, 2018 (edited) You are so right without my support system I would be in a much different place now. From day one when his dad was arrested and me finding out I was pregnant two days after, I have literally have the most amazing support system. Update: for now there will be no surgery just monitoring him. Well, I shouldn't say no surgery. There will be no surgery on the prolapse. But, there will be surgery most likely a tonsil removal and another attempt to repair the laryngeal cleft he has. We will also be following up with neurology to see if we need to switch up medication, he had a sleep study and the doctor believes he may be having short little seizures in his sleep that we haven't noticed. Along with central sleep apnea now that she thinks may have been developed because of the seizures... After years of fighting for Emerson to get a sleep study we finally won the battle and came out knowing why he doesn't sleep well and what we can do to fix it. He stops breathing for about 20+ times in an average hour period caused by both central AND obstructive apneaas well as a few possible small seizures throughout the night. We have also FINALLY been okayed by his doctor and insurance to go through with behavioral testing. Started that process well over two years ago and finally there. Both excited and almost scared? I don't know hard to explain. I am so happy that we will finally maybe know why he has these random outburst of hurting himself and others. As well as hopefully finding a solution to all his sensory processing issues. But, worried about what these diagnosis' will bring? It's been an incredibly challenging , amazing journey that I wouldn't trade for the world. Even with all the bumps and bruises gained along the way. It's just extremely hard to see the light sometimes during those bump and bruise moments. Edited September 23, 2018 by aruth5000 Iggy and classylady 2 Quote Link to comment Share on other sites More sharing options...
aruth5000 Posted October 6, 2018 Author Report Share Posted October 6, 2018 Just like that two more diagnosis'..... Autism which isn't a surprise to me but, I always hoped I was wrong and that he would "grow out of it". Second on sensory processing disorder. I feel like I am glad to finally have more answer. But, on the other hand feel like a failure again because more doctors and more therapist that I will have to rely on others to do for me.... Quote Link to comment Share on other sites More sharing options...
aruth5000 Posted October 7, 2018 Author Report Share Posted October 7, 2018 Come home from work tonight and he's passed out on my bed waiting for me. And yes he is pajamaless the joys of sensory processing disorder clothes and anything touching him is a constant struggle. Took a temporary second job so that we can take him to Disneyland the end of this month. Love coming home to cuddle with him and love that he tries to wait up for me. 😍😊 These are the moments I just love. Quote Link to comment Share on other sites More sharing options...
aruth5000 Posted November 4, 2018 Author Report Share Posted November 4, 2018 We have surgery on the 12th to remove adnodes and tonsils. They will also reevaluate his laryngeal cleft and decide if they think another surgery is necessary. Took him to Disneyland last week he was so spoiled with gift cards he had gotten from customers at my work. Was a much needed vacation from all the stresses of life. I needed it and so did he. JohnsonJones 1 Quote Link to comment Share on other sites More sharing options...
Sunday21 Posted November 4, 2018 Report Share Posted November 4, 2018 @aruth5000 Bless you for taking him to Disney! He looks so happy! You are in our prayers. aruth5000 1 Quote Link to comment Share on other sites More sharing options...
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