Obviously life with two boys with Down syndrome requires us to be quite flexible. Our plans don't always go how we expect because of behavior issues that might come up with the boys. Flexibility in this case is a good thing for us.
When it comes to kiddos with Down syndrome tending to have hyper-flexibility in their muscles, it's not always a good thing.
This is a tale of both good and bad flexibility.
GOOD FLEXIBILITY SITUATION ONE
We went camping this week. Ben had a nasty eye infection and then came down with a nasty cold. NOTE: we were reasonably sure he did not have COVID because Lydia and Stephen have been dealing with nasty colds for the past week, and they tested negative for COVID.
Now here are a couple things about Ben when he is sick:
1. Ben is so infrequently sick (which is GOOD) that when he does actually get sick, I think it really bothers him to not feel good. He doesn't know how to handle it because he is so unfamiliar with feeling sick. In the past, Ben has dealt with a cold for 1-2 days and then felt better. But this past week, he started with this eye infection on Sunday and a cold on Tuesday. Today, Saturday, he is just starting to feel a bit better. This is a long time for Ben to be under the weather.
2. Ben does not know how to not infect others. He forgets to cover his mouth/nose when coughing/sneezing. He touches every possible surface he can after touching his eyes, mouth, and nose. Sometimes it feels almost intentionally mean on his part, as if because he is sick then he is going to try and make the rest of us join him in his misery. I'm not sure if he is cognitively capable of such manipulation, but it sure seems like this might be happening.
3. I think a sore throat and stuffy nose really bothers Ben as a sensory issue. When he is sick, he tends to make gross nose/mouth/throat noises in a effort to clear away the weird sensory things he is feeling. I try to empathize with his frustration, but it's gross listening to all this snorting, wheezing, gurgling.
4. The few times Ben has suffered from the stomach flu, he is very scared that we are upset that he is getting sick. He is worried we will be angry about making a mess. Of course, we don't get upset with him. We are guessing that in the orphanage he must have been "punished" for making a mess when being sick. We would never treat a child that way. It's very sad that is what Ben had to deal with as a little kid. This fear while having the stomach flu is one of the few times Ben presents a real sad. Usually Ben's sad presents as mad. But when Ben has the stomach flu, he presents as this very sad and pathetic little boy which just breaks your heart. He is also very open to comfort and affection which is usually not something he accepts easily.
Ben suffering from a cold, however, is a very different experience. I already mentioned about it seeming like Ben is purposely trying to spread his germs. He also becomes very defiant and difficult. I don't know what is going on his mind, but it seems like he is trying to do everything he can to make us NOT want to comfort or care for him.
So needless to say, camping with Ben being sick with an eye infection/cold was not the easiest experience. We had to be flexible with our plans because it often meant we quarantined Ben with one of us so that he would not get the others we were camping with sick. Part of me felt bad that he felt so lousy during this trip, but part of me also grew very frustrated with his defiance. I had to try to be flexible with my emotions and try to show love and compassion at times when I felt the exact opposite. Just being real here...
BAD FLEXIBILITY SITUATION ONE:
Because of Jonah's hyper-flexibility, his kneecaps can easily slip out of place. This happened to Jonah's left knee on Wednesday night. It was very painful, caused his knee to swell up, and made Jonah refuse to walk for all of Thursday.
BAD FLEXIBILITY SITUATION TWO:
Because of Jonah's increased kidney swelling, we are on a strict 2 hour bathroom schedule with double voiding each time. When you have a little boy who is pain and doesn't want to move, it's very hard to bathroom him both from a physical standpoint and mental standpoint. He got very stubborn and defiant. So we were very concerned that this knee injury might negatively affect his required bathroom schedule. Fortunately by Friday, he was able to move easier so the bathrooming got easier as well.
GOOD FLEXIBILITY SITUATION TWO:
We had to be flexible in our plans for hiking and beach time because Jonah was just not up to these adventures. We considered coming home early but decided we might as well sit around our beautiful campsite instead of just sitting around at home.
UPDATE ON JONAH'S KNEE:
Even though Jonah was walking better today than yesterday, his knee gave out on him once this morning and once this afternoon. This caused him great pain. Plus the swelling has not went down.
We decided that maybe we were doing more harm than good by letting him move around without knowing exactly what was going on with that knee. And we felt the knee needed to be wrapped or braced to prevent it from slipping out again. So we took Jonah to urgent care thru Children's Hospital.
Xray showed no fracture which is good. It did show the patella is to the side when it should be in the middle. In order to know if anything is torn, Jonah would need an MRI. Urgent care consulted with ortho, and it was decided that Jonah would use a knee immobilizer and walker for the next few days as well as regular icing and advil. Hopefully this will help the swelling go down. Then next week we will check in with our pediatrician who will decide if ortho should be seen to evaluate for a tear and to discuss how to prevent this from happening again and again.
