Hello everyone! I am sitting here typing away, with my coffee on one side, and Wyatt on the other. He is flipping through a book, and watching Frog and Toad, which incidentally is the cutest little cartoon. He is also chattering away so please ignore any typos. Billy is in the kitchen preparing the sourdough so that he can make a few loaves for Easter. It’s a pretty good morning.
It was a very busy week this week – our appointment season is almost over though! There are times of the year when we have all of Wyatt’s specialist appointments in a row, like a month or so of them, and it is crazy. We had his epileptologist appointment this week, and it went really well. We had nothing but good things to report and his doctor was very pleased! His EEG in June looks like it will only be one night now instead of two, so that was welcome news.
Last Saturday we had a little guest at our house. We watched my littlest niece, who we call The Hurricane because she is a whirling dervish causing mayhem. We had such a great time with her! She kept us soooo busy but it was really cool to hang out with her. We have time with her older sister all the time so it was nice to hang with just E. She went from one thing to the next to the next and so on. She loved our fish so much, they were a big hit. I had to stop her a few times from trying to reach inside the aquariums to grab them though.
Sunday we had a birthday party for another of our nieces. It was so cute to see T. full of excitement at her party. She had all of her friends and family there, and she was happy that she had all of her aunts there at one time. It doesn’t usually happen for some reason and I loved that that made her happy. She had an axolotl themed party with very delicious cupcakes!
This week we also had some sunny warm days, finally!! We are trying to get outside as much as we can on these nice days between now and Wyatt’s surgery. Wyatt and I spent almost all afternoon Wednesday playing basketball outside. It meant lots of rounding up basketballs for me though, so I got quite a workout. I need one of these nieces to come over and fetch for us! We also had dinner out there as well. Wyatt loves picnics, so we had a picnic, then he and his dad played outside until bedtime. It was awesome. This might not sound like much, but before the ramp was built, Wyatt was not able to go outside and play. Wheelchairs are not great on grass, and just getting to the yard was very difficult for the two of us. I would have to carry him out the front door and around the house to the back, which doesn’t sound too hard, but imagine the person you are carrying is 70 pounds. I am not a big human either, so it was getting sort of rough and we just didn’t do it very often. Now though, we have our freedom back and it has been wonderful. Using the ramp all winter to leave the house whenever we wanted, now using the ramp and being able to utilize the deck space, has transformed both of our lives. We were able to get out some yesterday as well. Today is going to be really warm apparently, so we are going to go out on his bike too.
Speaking of his surgery, we are working on preparing for it the best we can. We have pivoted from walking as much in therapy to more strength training, both there and at home. We have added a few extra home exercises to build up his muscle strength, which will help him recover easier, and are just trying to get him to move any body part as much as possible between now and then. We scaled back on school for the moment, focusing just on the essentials (I mean, I think it is all essential but we are sticking a pin in a few things for now – like the Revolutionary War and artist studies).
I also started thinking about what we will need during recovery. What will we do to entertain this kid while he is in bed, or stuck in traction for weeks? What special clothes might we need? Bathing, how does that happen? So we are looking for these solutions right now. I have a whole list of books I made the other day for us to try during that time. I think we will reread some old favorites like Frog and Toad and Mr. Putter and Tabby, introduce some gentle reads for that first week home, like Paddington, and then as he feels a bit better, add in books like The Hardy Boys. Then we will see what else he would like to read.
We had had reservations for Providence in August, which are obviously now cancelled. So, I put together a list of some books for myself as well, that focus on the seaside and the coast. They are not all New England based, but some are. That is the great thing about books, we can travel anywhere with them. And Providence will still be there in the future. The whales will have to wait!
Wyatt and I also convinced Billy to use some of the leftover lumber from the ramp to build little free libraries for us! We want one that two houses – one that is the typical height, and one that is lower for children and wheelchair users. We are also going to have Billy install a camera so we can see into the backyard while we are in his room if we want – we have three cats that like to hang around and I know Wyatt will want to keep updated on them. We have the neighbor’s cat, Knox, who is super sweet and we can actually pet. Then there are two cats that we don’t if they are stray or not. One is a big tabby, and I have named him Angus-Fergus, and there is one that just showed up, a big rough looking guy who has been around. He is white with black splotches, and we named him Brando. I don’t know why they like our porches so much but they do. And that is ok.
And jeez, I feel like I am just rambling away today!! I should wrap this up! Lol.
I hope that whatever you all do today, whatever you do this weekend, that you feel safe and loved and do something that makes you smile.
Still Life, With Cracker Crumbs.. 
Oh, this just has me smiling ear to ear, Erin! I’m so glad you got the ramp last year so you can use it right away this spring. I bet Wyatt will just blossom with this newfound freedom. Your little Hurricane seems to have hair just like Wyatt’s. I love the axolotle themed cupcakes! They look delicious. I wish I had words of wisdom for this summer, but I think Wyatt will come through this in his usual inimitable way…pushing through and winning. Please let me know if there’s anything I can do to help.
https://marshainthemiddle.com
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It has been such a huge blessing to us!! We had to make it really long because we didn’t want him to have a bunch of twists and turns so we also now have a really fun play area for him, as part of the deck for it. He is loving it!
They do have very similar hair! My hair was a lot like Hurricane and Mermaid Girl’s when I was their age too, before I had to start coloring it.
It is one of those things – we just have to tough it out! And thank you Marsha. 🙂
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What a great post, full of fun news…and nice photos, too.
Here’s hoping for a wonderful surgery, and lots of good times during recovery.
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Thank you so much Laurel-Rain. 🙂
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It’s so wonderful that you have the deck and ramp and lovely to hear how you’re using them. And really good ideas for prehab – I’ve just done a project on prehab for adults before surgery and that’s all stuff they talked about – moving yourself and keeping / getting strong.
I actually had the day off today, doesn’t always happen for me on bank holidays but it did (I have to work Monday though). I went to the gym then did the local food shop, then after lunch I helped Matthew go through a spreadsheet of stuff at his parents’ house to check what it’s worth / if it’s worth selling ourselves or accepting the quote from the house clearers for it. Nice to be working together towards something. Now I’m catching up with blog posts and writing a book review before doing some reading … Tomorrow it’s parkrun in the morning (I’m just volunteering, not the boss) and then BookCrossing in the afternoon which involves two of us going up to fetch our friend Ali and bring her to it in the car with her powerchair (someone else is helping to take her back home).
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I swear I answered these yesterday but I guess I didn’t! I apologize if you are reading this twice!
Thank you Liz. We are trying so hard to get this little guy in motion more often to build up that muscle! And Billy and I are getting a workout as well. Lol.
Yay for a day off! It sounds like it was a good one. I need to find out what BookCrossing is. Every time you mention it I am intrigued!
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Oh I love that axolotl themed party! What a fun party idea. It sounds like you had a good week. I really hope all goes well with his surgery; it is so smart to plan some workaround now ahead of time. I think that is one of the huge benefits to homeschooling– that pulling back and scaling back when you need to. I’m sorry you had to put your trip on hold. If you ever do make it Providence I’d love to know! That is just 45 minutes away and where my son goes to college so I feel like I’m there fairly often.
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I feel like we were granted this blessing of time before the surgery, so I am going to make us of it to prepare! And yes! It is such a huge benefit to us, especially with all of Wyatt’s medical needs!
Oh how cool! And I will! It looks like such a lovely city. Like a big New England town but more laid back, than like Boston? And we thought we could drive in to Boston for a day from there? Lol. Uh-oh. Now I might be hitting you up for advice in planning our future trip there! It would be so fun to meet up!
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Yeah, I think a day trip to Boston is totally doable from Providence (it should be less than a hour between cities) The great thing about Providence is that since Rhode Island is such a small state and Providence is so centrally located you can be just about anywhere in the state in under 30 minutes. I have no problem giving advice.
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I’m sure the ramp makes a huge difference! Sounds like you had a fun time with The Hurricane. Those cupcakes look so good!
Jill – http://www.dousedinpink.com
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It is such a blessing for us! We have so much more freedom!
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Little Miss loves axolotls! Those cupcakes were cute. And all of that sounds so wonderful for when Wyatt is recovering.
I still can’t convince you know who to build me a little library so I am excited for yours! I am considering buying a premade one and just bypassing him.
I love that you will have a way to keep an eye on the cats. I just hate that this is coming during the months when you usually go on vacation, etc. but I love how you are planning to make your time as special as you can.
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They are super cute!!
I am not excited about all of this stuff, but I feel like I am going to try to make the best of it for Wyatt. He may need some video chats with Little Miss, even if he just listens to her, while he is recovering!
He really likes Knox, especially since we can pet him.
We are bummed about Providence. It was our combined birthday trip lolol. We turn…. 50! This year. Don’t tell.
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Little Miss would love that. No kidding. She can show him her stuffed animals or something. We also have a new pet store near us so maybe we will have a new reptile to show him. Sigh. We will see.
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Oh and I won’t tell. Your secret is safe with me!
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Yay for the ramp proving itself to be that useful!
Little free libraries sound great, too. We don’t have the possibility to put one up here, but the public book cabinet is not that far away, so that’s okay.
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I am so excited about the Little Free Libraries! I have been asking for years! Lol. And the ramp has been such a blessing. Everything we have hoped for!
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This is such a lovely post – from the good news at some of Wyatt’s appointments to the fun times with the hurricane, to the axolotl cupcakes (yum!) to all the wonderful time spend outside and your ability now to do that as much as you want. Being able to choose to leave the house, even just to get to the yard, is such a huge and wonderful thing. And probably will help your back a bit too! Your little free libraries sound lovely. It always makes me happy when I see them around the neighbourhood, and I especially love the idea of making one that’s lower down for kids and wheelchair users. There’s one at a local elementary school, and we love to go and take a look at what’s new in there! I hope you guys are able to find solutions to all the hurdles you’ll have to figure out post-surgery, but you’re very resourceful and creative, so I’m sure you’ll find ways not only to deal with the essentials, but to make it feel more cosy and reassuring for you guys. I love the idea of reading some favourite books – I have always found a lot of comfort in re-reading when I’m dealing with medical stuff! Oh, and the snail picture is wonderful. I’m fascinated by those little guys!
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It has been so very liberating to be able to just get outside when we want. When he was younger, it was easy and we were outside all the time. Then as he got older, it was harder and the walls just started closing in. I think we are both just so excited about it!
I have wanted a little free library for ages! I think Wyatt adding his voice to it has helped. Lol.
I’ve got some ideas cooking in there. Lol. And we are looking forward to the nature videos from you guys and Sarah! That will be something to look forward to when we are stuck indoors – again. Lol. At least we will have spring and fall.
We are big snail fans here too. That guy is Stevie Wonder Snail, a garden snail we picked up last fall right before it got really cold in a sudden snap. He seems pretty happy!
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You have a lot on your plate, Erin. Here’s to your skills at planning. Your homeschool planning has served you well as you embark on this new challenge. And I’m just thrilled you have the ramp and have been able to get outside. I’m sure that means all the world to all your family.
Where will his surgery be and will the traction mean staying in the hospital or can they do that at home? I hope it will be smooth for you all. Big hugs.
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Thank you Jeannie. I think planning things helps me feel a little bit more in control over things I don’t have control over but for this I don’t mind that trait. I am going to need the lists! It has been so awesome getting outside again. Today is so windy here though that we are inside. Lol.
His surgery is going to be at Motts in Ann Arbor. We go for his preop this Friday and we will learn a bit more. I think he will be in the hospital for a week, but I am not sure. I met another mom, the mom of another bowler in Wyatt’s little league he was in, whose son had this same surgery last year. She had to go to Minnesota to have it done, because of his particular genetic condition! He is doing great now though so I am keeping my mind focused on that as much as I can. The traction will be at home. I keep calling it that, but it is more like he has a wedge pillow strapped between his legs for a few weeks. Which still is awful. And thank you Jeannie.
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I agree about planning and control. It’s at least something! I’m glad they can do it at Mott — so much easier for all of you. And also that the traction — while not fun, I know — at least doesn’t involve legs attached to cables above his head! This is such a huge big deal. My heart is full for you all.
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Yay for the ramp! Those cupcakes are adorable and how exciting to go down to only a one night stay.
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I did a little dance when I learned that. Lol.
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I hope you all had a nice Easter weekend … and enjoyed one of those fun cupcakes. What month is Wyatt’s surgery? It’s good you are preparing with his strength and exercises. I have a knee replacement coming up so I am also trying to prepare with exercises & strength. it’s good being active beforehand (as long at there is no pain).
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I definitely had one of those cupcakes. It was delicious!
Wyatt has surgery in July. I have been trying to learn more about “prehab” and it sounds so important, so good for you to be doing the same! When do you have your surgery?
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The ramp sounds like such a blessing. Good for you for finding ways to make the pre-surgery time both special and productive for “prehab” and other preparations.
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I am glad Wyatt’s recent medical appointments have gone well! And family visits and a birthday part sound like a great way to celebrate the week. Something as simple as a ramp can really be life-changing. Being able to have accommodations like that can make all the difference. It sounds like you are on the way to being as prepared as you can be for the surgery and recovery after. I hope everything goes smoothly. I love the idea of the two little libraries! I hope you have a good week, Erin!
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