Somehow October is finished already
and November has started!
Where does the time go?
Here's where our time has been spent:
HEALTH
With Jonah not feeling 100%, he often wants to just cuddle and be comforted.
It's been a long road since Jonah first started experiencing kidney/bladder symptoms in early August, and it will continue to be a long road before things, hopefully, get back to normal.
Jonah still has his suprapubic catheter. It cannot come out yet because Jonah is hardly voiding any urine on his own. Most of his urine output is coming through the catheter.
The reason for this is partly because Jonah is very much off his routine of going to the bathroom because of all the issues he has had to deal with these past 3 months. I am sad to say that whatever progress we had made in the toilet training area may be lost...
Another reason is because it seems every time we try to have him off the bag for a few days, it seems like his back pain increases and his urine starts to get cloudy. It's this repeating cycle of trying to have Jonah pee on his own, pain starts to increase and urine infection starts to set in so then have to go back to being on the bag (meaning all urine comes through catheter).
In regards to the urine infection, it seems the doctors only treat them if they are causing a fever. Otherwise, it is "normal" to have bacteria present when there is a catheter.
So 2 weeks ago, Jonah started to be in a lot of pain and running a fever. We cultured his urine, and he ended up having a staph bacteria present. This was treated with antibiotics. Jonah felt better during the 5 days plus he was on the antibiotic. However, this past week, his pain has increased and urine is starting to look cloudy again. He is not running a fever so no culture is being ordered yet. However, he is now back on the bag again for a few days.
Just a hamster wheel that keeps going round and round...
So what exactly are we waiting for or working towards?
Jonah's renal scan on 10-28 showed that his left kidney is still functioning quite well which is GREAT news.
This means that doctor wants to continue giving that kidney time to come back down to normal size. Jonah's ultrasound on 10-20 indicated the left kidney was still severely dialated despite the stent being in place since 9-4. Since stents have to be replaced every few months, Jonah will have another surgery in the next 4-6 weeks to replace the stent and the catheter tube. Jonah has to continue to be on the catheter because of his problem with voiding 100% on his own.
Then the plan is for this new stent to be in place another 4 weeks. At that point, I'm guessing another ultrasound to check if left kidney has reduced in size. Doctor says he expects this to be a long slow process.
The problem for me is all the pain Jonah keeps having to experience because of
1. His voiding problems 2. The presence of stent 3. The presence of catheter tube
At this point, I am frustrated and a bit weary about the situation because I feel so helpless for Jonah.
I keep hoping things will start to look up soon. It's been a long 3 months...
HOMECOMING
Some exciting news! Our Lydia got chosen for Homecoming Court 2020. Isn't she beautiful? It was a rather different experience since it had to be Homecoming "COVID" style- court had to wear masks, no pep rally, and no Homecoming Dance, but I think Lydia will still cherished the memory!
HOMESCHOOLING
Jonah's writing paper from this morning- he nailed it!
Since late September when the boys were put in quarantine due to direct contact through school, we decided to keep them virtual and not put them at risk for exposure through school.
Homeschooling them since March 2020 has been quite an interesting experience! I keep learning more about them and how they process things. I think the boys and I, especially Ben and I, have really bonded because of all this extra time together. I actually love working with them. It is so fascinating to watch them learn, and it's so exciting when things "click" for them. Very rewarding and heart-warming.
Of course, I feel bad they are missing the expertise from working in person with their teachers, but I am very grateful we at least get to work virtually with their teachers. That helps me so much!
So yes the school day is a challenge for me. Things often don't go as planned and constant modifications are needed to make something work better for them. Some days their attitudes or Jonah's health just aren't in the mood for learning. I'm learning to be flexible and just do the best I can. They're only 10 years old- they have a lot of learning opportunities ahead of them. It's ok if not every day is the most productive school day.
The funny thing about the above photo of Jonah's writing sheet is that he did this sheet ALL BY HIMSELF! I wasn't sitting by him to help prompt him or anything.
Since Jonah often doesn't feel that great, he has an even harder time staying focused on school. The other day, I started to think about what it must feel like for him to have all these demands placed on him to do school work when most the time, it hurts for him to just move around. So I decided, why not just let him do his entire school day from the love seat? Why not just let him work at his own pace for some of the activities instead of constantly trying to motivate him to do more?
Yesterday I set him up on the love seat with his own Chromebook so he could be virtually present in his classroom. Ben and I set up at the dining room table as usual. I gave Jonah the worksheets that he needed and his pencil, and decided for that for 1 hour, I would just let Jonah fend for himself. I would stop bugging him. He has enough of my interference to put up with for 24/7 because of school and all this extra personal/medical care he requires as of late. Maybe he just needs a break from being told what to do.
Well, the little guy blew me away! Both yesterday and today, he just started doing the worksheets on his own. He didn't do them perfectly, he didn't always finish them completely, but for the most part, he stayed on task. He was very proud to show me and his online teachers his work.
It also helped him to just stay put in one place all morning. I think it definitely helped with his pain management. I'm hoping we can continue with this set up since as I mentioned before, we have many more weeks of recovery ahead of us.
The other benefit so far is I think Ben enjoys having my full attention because I do sit with him at the table. Ben requires less prompting so I don't really have to worry too much about over-nagging Ben like I do with Jonah.
Quite the adventure!
HILARIOUS!
We decided we would give our dog the extra special treat of taking him along camping with us for our last weekend of camping in mid-October. Isn't this what good dog-owners do?
Well, apparently our dog is not a camper.
At the campsite, he sniffed around for about 30 minutes when we first arrived. Then he ran to the van and hopped in the back and wouldn't get out. After about an hour of waiting to see if he would join us by the picnic table, we decided to call it. Lydia took him home and stayed with him that night.
The dog is 13 years old- maybe he just thought he was too old to have to rough it!
So that's our update.
Lots going on in this crazy time we live in!
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