Today was one of those “busy at home” days. I started the morning running out before the kids were really up and going, and I brought my brother and sister in law and their kids to the airport for their family vacation. While I was doing that, Michael got the kids all up and going, fed, and medicated and ready for the day. As I was on my way home, he made a run out for a quick food run, and Kris kept an eye at home for that 20 minutes or so. When I got home I put the food away and we had a pretty low key time.
I feel like the day just kindof faded away! We did laundry and played with kids, worked on finishing up the last of school a little, and the day was GONE. After dinner, we sent the kids out to play again! It was such a beautiful evening, breezy and a perfect temperature! Michael even came out to play!
After bed time, Kristopher offered to watch Ryleigh and keep an eye on sleeping kids so Mike and I could get out of the house. We drove to chick fil a for a milkshake and took a lap through downtown, only leaving for about 40 minutes, but it was nice for that little change of pace!
Today we took the ENTIRE day to do lawn maintenance, it seems. Michael mowed the playground part of the yard during lunch, Kristopher mowed the rest of the yard after lunch. As he was finishing, I edged the playground area, a little bit of the side yard, and then started in on the front ditch area. When Kris finished mowing, he went inside to keep an eye on napping littles and just be around, and Michael came out! He worked with the brush cutter taking down vines and such that had grown up over the last year and more.
Our two ‘responsible’ kids (Lynae and Kristopher) kept eyes inside for us, but that time came to a halt when they realized Ryleigh was fussy and pooped. They came and got me promptly! Ha!
Michael worked on the yard a while longer, but I came in and quickly showered off to get the dirt and “vine juice” off of me! I think I probably got some poison ivy and didn’t want to pass that on to anyone, either. Ryleigh survived until I was ready to take her, and by the time she was clean and settled and everyone inside was calm… it was dinner time.
Kris suggested pizza, and I ordered it since Mike was still outside working and the kids were done with being ‘responsible’ for Ryleigh! Ry didn’t want to leave my side, so cooking was shirked and a delivery car pulled up with pizza a short time later. Michael might have thought I was headed outside to visit with him, but really, my app had notified me that the delivery was almost here! Of course I was glad to see him as well.
The girls had out computers, so they cleaned up and put those away, we grabbed juice boxes for a simple drink, and ate off of paper plates (which is a really rare thing here!). It was a good evening! To end the day, the kids went outside and played with the chickens and out on the playground. The air had cooled and it was a beautiful evening!
And while I was working, I didn’t take a single picture all day. It was fun, though!
A bit of today’s fun! Mike took 3 of the girls to the elementary school parking lot to work on bike riding with Brianna and Harper.
While they were gone I set up the little kiddie pool and a few kids were insistent they try it out IMMEDIATELY. They also turned on a sprinkler in the playground area.
This evening, I took Ryleigh out to the pool and even though it was cold, and she HATES baths, she was very happy to go play in the water! What a goofy kid!
Also, I love the look of Nya and Brianna’s new glasses!
Tonight was our first Zoom meeting with the ESP parentmentors community group!
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Today got off to a quick start when w we realized we were out of chick for. Well, apparently ALL of our town was out of chick food, because our store was out of chick food. I grabbed some all flock feed and they will survive the weekend on that.
I got home and worked on school with kids for a few, but then it was quickly time for lunch and for Wesley and I to head out the door to get to Atlanta for his VNS update!
The VNS is now titrated up to the frequency of signal that it will stay at for a while. In 3 or so months we will see the doctor again if needed and he may increase the frequency in time or duration that the signal is sent. We haven’t seen any effects from the VNS yet, but we haven’t seen a seizure either, so it is hard to tell, until his next seizure comes out we pass the usual window for it to have come, whether or not it is impacting. So far it has been about 4 weeks, and his seizures are often 2-6 weeks apart.
Our PT came out to work with just Nya today since Wesley was in Atlanta during his therapy time and Nya wasn’t really interested in getting very active until Silas was allowed to join them outside. THEN she was really to go down to the playground and play!
Once I got home for the evening, since the kids were all at the table, I took Ryleigh and walked outside to check on the garden as well as the chickens and chicks. We found 5 fresh eggs in the laying boxes, and I felt impressed to bring them to our neighbors. We had an abundance of eggs in the refrigerator and this was a way we were able to be generous. What ended up happening was a conversation that led me to rethink some potential career path options and possibly seek a really flexible part time job! We will see what becomes of it, but the timing felt God- ordained!
By 6pm Nya was again saying tired and asking to go to bed. She was NOT sweaty like she had been the last two days, though!
Overnight I went to her room to check on her before going to bed myself and she was “riding the vent. ” That means she was going periods of time without initiating a breath at all. In the hospital we thought it was about 30 seconds, but but tonight at almost 5 minutes, Wesley made a sound that startled her and brought her out of it. We definitely need God’s guidance on what to do with her ventilator settings…
Once again Michael needed to head out to doctor appointments this morning. Today it was all visits for Kristopher and Wesley. While they were away, I felt just a continuation of yesterday was coming on. James and Aleksa both ramped up early, but all in all we were going to make it through. I worked on some school and some survey work, we prepared lunch, and Michael and the boys got home shortly after we were settled from lunch.
The afternoon and evening blended together as we meet the kids play, took care of basic household needs, and we took care of the children together. It’s always a nice day when in retrospect there’s nothing significant and bold that reminds you of the day when it was intended to be a relaxing day!
Ryleigh did NOT want to sit down for lunch, and I was busy anyway, so I lowered her tray and gave up the fight. She stood through her lunch and ate off the high chair tray!
The girls and kris played minecraft together on a server that Michael and kris are making. Ryleigh and Silas zoomed their little trikes through the house and Ryleigh learned to cover her ears and showed us at dinner time, which is adorable!
Yeah, it’s Tuesday, but as our first day home, I needed to prepare a little for the week. That started with picking up groceries, making an appointment for Wesley to get his g/j feeding tube replaced at the hospital (tomorrow), and then coming home to put all the food away!
Michael worked on lunch for the kids while I finished putting groceries away. The girls had filled the truck with cardboard while I was out at the grocery store, since we get A LOT of boxes every week. He ran to the recycling plant while the kids sat down to eat. Of course, once everyone was settled to eat, Ryleigh was DONE being in her highchair and had eaten whatever she was going to already. I sat her on my lap and fed her the yogurt I’d gotten out to eat. Ha! Delaina did go get me a baby spoon for her since my spoon was a little difficult to feed her with.
Once everyone finished up lunch (I don’t think I ever ended up eating lunch…) we started putting little ones down for naps. Once everyone was settled, I read through Kristopher’s final paper for one of his classes that finishes up on Friday. He is an excellent writer, but some basic things like pointing out repeat words, looking for clarification for someone who doesn’t know what’s inside his head, and simple grammar he might have overlooked. Michael was working on getting Nya fed and kids through the bathroom while I was working with Kris, but once everyone was settled, he suggested I go take a NAP! That was the best suggestion I’ve heard in days! 🙂
I laid down for about an hour and a half, and nodded off a little but had a hard time actually falling asleep. I’m part of an Abeka survey study, so after getting up I worked on that for a while. It has been an interesting study to be a part of, and this is the 3rd set over the last 6 months.
Today was really lax with activities, but the kids’ new glasses came in! Our typical kids are sporting their sunglasses (Silas doesn’t wear glasses). We started on dinner before long. Mike and I traded off on who did what, but we ended up with a kid-friendly dinner and an adult dinner again tonight. That seems to be the way we fly lately! Everyone is happy, though.
Kris put together some chairs that we had ordered online that needed the seats screwed on, Michael played some video games, I worked a little more online, and once again we turned on The Office for background. We enjoy the dry comedy!
We started the day with a blood stick in the finger for a CAP(cappilary) gas, but it took 2 different nurses and 3 pricks to get it done right, despite the easily-bleeding finger. Our pulmonologist came by that sees Nya (and James) outpatient, and he and I came up with a plan. We keep bipap settings with a backup rate as her primary for 1 week. We monitor her energy and see if she is improving despite the vent changes. After a week, if she’s not improving, we also put a secondary vent setting on which is the PREVIOUS settings, before the wean that was done in March. If we’re able to stay on the bipap settings, then this setting becomes a “sick” setting, to give extra support and keep us out of the hospital if she starts feeling poorly.
That was step 1, getting to a place we are comfortable going home, the doctors are comfortable sending her home, and Nya is comfortable enough to function! We are keeping the albuterol to try before exercise, and we’ll see if it helps, and if so keep using it. If not, then we’ll just stop.
We had a concern with a glucose number that was fasting and was off the charts (246), so we got an A1C and a glucose finger prick, both of which were normal! (5. something and 104). That was a relief!
Nya had a swallow study today as well. First they wanted to know that she was “accepting” of the idea of a drink and a puree. I’d brought a cup and a pouch of food with us, so I was able to get those out and show that she accepts them (but she coughs with water). A little while later we went down to do the swallow study and she immediately aspirated the thin liquid. The puree she was able to safely swallow, but not really “successfully” swallow. She left it sitting in her throat, in the back of the throat, and even drew it back up into her mouth a bit. It was a little weird.
The speech therapist wants us to work on water with a teaspoon, only after brushing her teeth (to minimize bacteria), and only 3 or so spoonfulls. She also suggested trying the purees each mealtime, but again only about 15ml or so at a time. The goal is to safely learn to swallow better and repeat this again in a few months to see how she’s doing and whether she’s safe to work toward actual safe eating at that point.
Once everything was settled out, the vent was set to the new settings, and they had ordered medications (and a cuffless trach for home), then we were able to discharge at around 3pm! Nya was asleep pretty quickly in the car and slept most of the way home. I grabbed some Chick Fil A as soon as we left since I’d only snacked all day. Our drive home was simple, just a lot of traffic.
The kids at home yelled “MOM!” and came to give me hugs, but SILAS… he ran through the entire house yelling “NYA, NYA, NYA, NYA!” and was SO excited to see him! Ryleigh was excited to see mom, and I pulled her out of her highchair at her insistance. She had some giant smiles and a tight grip on mom! A few hours later when I sat in the recliner, she climbed up, patted my chest, then clapped and bounced up and down. I guess 4 days wasn’t long enough to wean her! I’m ok with that.
We worked together to get the kids in bed, Nya settled and mostly unpacked, laundry started from the hospital stay, and Brianna through the shower. Ryleigh and I walked out to my garden and to check on the chickens. The lettuce has taken off, and cilantro, too! There are two types of squash growing pretty well but not as big of a change as the others. I need to get out there to pull weeds, but everything is growing nicely.
The evening brought time for Mike and I to sit and talk a bit, and he and Kris ran out to fill two of the cars up with gas, along with our empty gas tanks since there’s a big issue with gas availability right now. If we needed to go out (and we have 2 sets of appointments an hour plus away later in the week), then we need to be able to get there, even if gas stations are running low on fuel.
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My Normal Family 