We are less than FIVE DAYS from Fulton’s spinal fusion surgery at Shriner’s in Philly. How have I been passing the time…when I’m not imaging worst case scenarios????
1. We moved Teddy’s bed out of the downstairs bedroom. The idea was to have Teddy sleep upstairs in Byron’s room. That worked for about three nights before we realized that Teddy has put on A LOT OF WEIGHT. (In a good and healthy Spinraza induced way I believe but still.) It was a struggle to get him up the stairs safely (we have an old house with steep steps) and position him in the IKEA KURA bunk bed, top or bottom bunk. Finally we decided to put a camping cot in the downstairs bedroom.
Fulton is happy because he didn’t want to sleep alone, and Tony and I, while now making more trips up and down the steps in the middle of the night again, are no longer at risk of injuring our aging frames. Teddy is less happy because he loved being upstairs with everyone else. So my ongoing goal to never make all my kids happy at the same time is succeeding wonderfully.
Once Fulton’s home, I’m not sure where the cot will go (depending on Fulton’s routine and overnight nursing situation). Tune in next time for another exciting episode of ‘Teddy’s Shanty Town Sleeping Arrangements’!
2. With the bed out, we finally tried the Hoyer lift. And Fulton hated it. I think the room change, the lift, combined with the rapidly approaching surgery is finally bothering him enough to warrant a response. Fulton tends to not express a lot of emotion; it’s all there- he just doesn’t share it. Until he does, then it all comes out at once and he has a hard time expressing all those big, pent-up feels. And while he rationally understands about the surgery, what it entails and the recovery, it’s also this big scary unknown I don’t think he, or I, can truly wrap our heads around. People keep saying they’ll pray for us, and I’m like “YES, PLEASE AND THANK YOU! WE’LL TAKE ALL THE PRAYERS!!!” I understand if it doesn’t seem like much, or that you’d like to do more, but prayers are such a balm for these big fears that are constantly lurking at the edges of my mind. I need to be strong to help my son tackle his feelings through this; I need your prayers so I can do that. He needs your prayers because I can never be enough. Our whole family needs prayers because it will be a long couple months of recovery that will likely impact everything around here. Thank you for your prayers, seriously. Never feel bad if that’s all you can honestly do for someone.
3. If your child likes to color, or you have a huge bin of artwork you don’t know what to do with, I think Fulton would love to get mail while he’s in-patient. He doesn’t need gifts, flowers, balloons, candy or God help me stuffed animals (which I will burn without remorse), but hospital hours are long and mail is a welcome distraction.
The address is:
Shriners Hospitals for Children – Philadelphia
3551 North Broad St.
Philadelphia PA 19140
You will need to add his name and room number – 522B. If you’d like to mail it to my house, contact me and I can give you my address (after I run a background check on you).
4. In other big changes, school started for Fulton and Teddy this week! …sort of. First Teddy; he went back with no problems. YAY! But Fulton…sigh. Our district knew about Fulton’s surgery because I had to arrange homebound instruction through them, not his new school. However, they told his new school that he wouldn’t be starting until after his surgery and recovery in November. I had hoped to send him for the first two days (both full days) to meet his teacher, classmates, and tour the schools new campus. BUT that wasn’t to be because they didn’t know he was to start AND their new campus isn’t finished, which means I would’ve had to send him to their old campus, which while very quant and historic, is a fire trap. I decided to extend his summer break an additional two days and hope in a few months the new campus will be completed. Also- additional things Teddy is unhappy about; everyone being at home in pajamas while he goes to school in a uniform.
5. I think Teddy should be the happiest of all. His first two days got cut short because of the heat. Even though his bus and school are air-conditioned and he spends crazy amounts of time out in the heat driving laps around the yard unfazed. I seriously had a “when I was your age” moment and remembered that my bus had no AC and neither did my elementary school. I remember when I moved up to the middle school the dress code stated no shorts, the reason given being that they weren’t needed since the school had air conditioning. Kids today have it so easy!
6. My special needs conference has a website!! The legal and technical aspects of planning took up more time than expected but I’m hoping to keep the momentum going and make several big announcements soon. Visit the site, like us on Facebook and follow along as speakers are added and ticket sales go live. The day will feature four talks (one by Mary Lenaburg!!! SQEEEEEE!!), all day Adoration, food, time to socialize with other parents, and ticket holders will get access to an online library of talks and resources catered towards specific needs, disabilities and diagnoses.The amount of work to plan this thing is frankly insane, and I don’t know why I thought I had time start a conference, but I feel so excited about pulling it together and connecting/ helping people. I will probably lose tons of sleep, get sick, ignore a stabbing pain in my back and knees to the point of permanent damage, and yell at my family way too much – but it will be worth it!!!
7. Last take is for my kids. If you’re reading this, you forgot about the cookies Edie made. I finished them. There’s a life lesson here somewhere.
How’s your week going? Write it down then link it up below. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!
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