Unexplained

For a kiddo who only sees his pediatrician at his well checkup, seeing her 3 times in February was unprecedented. When Liam's fourth time running a fever hit I took him in right away. I was scared with his immune system still recovering from all the antibiotics he was on, he was potentially now getting sick with the flu.

Nope. No flu. Thank God! But no answers either. I did ask her to do a blood panel so we could check for any hidden sinister signs of trouble. It looked great! Whew!

I asked about all the 2 am questions that came to my panicked mind when I was trying to comfort Liam. Do you think it's his metal plates on his femurs causing rejection? UTI? Kidney infection? Recurring fever syndrome? Something more sinister? She doesn't believe any of those are reasons for his fevers and actually felt it was due to his constipation. Which he's had since his first round of antibiotics. Which is contrary to what a typical person gets while on antibiotics. Leave it to Liam for his body to respond opposite of what normally happens.

She said you see it a lot in the elderly but that brain injured kids can suffer from it too. That was news to me. We have suffered from some pretty difficult bouts of constipation and never experienced fevers before. But if that's what is causing it, I'll take it. It's an easy enough fix. 

We have had a variety of problems this month messing with his health and if we can get him working right again and there are no more fevers we are good to go. If we still have fevers and no constipation, then we will start digging deeper to the problem. But it's one of those issues where the Dr doesn't really know where to start so you just pick somewhere and go with it.

We helped him out yesterday and I am pushing lots of water. And Liam still woke up screaming at 2:30, completely inconsolable.

I'm telling you, the worst mom feeling ever is not knowing what is going on with your child. Throw in special needs and being non verbal and you feel utterly useless. Sitting by watching your kid scream in pain and frustration with no ability to alleviate their problem is the most humbling of experiences.

February Was Full of Fun

This month has certainly been challenging. Special needs parents face a whole other situation when our littles get sick. Compound that with being non verbal and you've got a fun experiment in trying to be a doctor with no idea where the patient is hurting.

Liam got a cold early in February that didn't want to let go. When the fever started and was still going strong 5 days later I finally braved the sick waiting room at the pediatrician to see what was going on. His ears, chest, and nose were clear and with the low grade fever he was diagnosed with sinusitis. With amoxicillin on board he started feeling better. But a week later the fever returned. Took him back in and the diagnosis was sinusitis again. This time they put him on augmentin. Several days into the augmentin the fever disappeared but the vomiting started. Cue traumatic flashbacks of the days when Liam threw up 5 times a day.

We are pretty darn good at trying to catch what Liam's spews which thank God are few and far between these days. But the ones in the middle of the night, those get nasty messy. Last night we went through 3 bed changes, 3 changes of clothes, draining his stomach so we wouldn't be woken up by hurling again, with a subsequent permanent wake up call at 4 am. 😱

We are thinking the augmentin was making him feel miserable along with the uncommon side effect of completely slowing down his bowels probably made him so miserable and uncomfortable for so many days.

We tried school today for the first time since last week in an attempt to show him he could do it and to get his energy and excitement back up. He last most of the day before he just couldn't go on. When the other kids went to recess they asked if he wanted to go. He said no. Then they asked him if he wanted to play on his eye gaze. He said no. They they asked him if he wanted to go home. He said yes. Poor guy was exhausted.

See how red his face his? Poor wee man kept it together as long as he could. 💗

Communication Update #1

So many changes for Liam this year in his communication. Exactly one year ago Liam got his first augmentative communication device. He got the Tobii Dynavoxx and uses his eyes to scan and make choices. We have wished for this for him for so long and it was definitely a gift to finally get it in hand.

Liam's speech therapist has been awesome. She gets frustrated with kids like Liam because she wishes she had been involved in their therapies before now. She wishes he had gotten the eye gaze years ago. Studies show that the earlier they get the device they better they do. Duh. 

I attempted years ago to get an eye gaze for Liam. We spent an hour with a rep talking about the devices available and attempted to get Liam to use it. The appointment ended with us being told Liam needed to know more verbs before using the device. Dumb. So dumb. How can you even carry on a conversation with out using verbs? I was frustrated.That speech therapist quit that week and we went with out until we finally got the one we have now. Did I tell you she's awesome? 

She has been so supportive. She saw right away that we could train Liam to use one. For Liam it isn't just about teaching him to use the device to communicate it is also training his eye muscles. His cerebral palsy affects his eyes. It can make them tire out quicker and the weak muscles have a harder time staying focused. 

The eye gaze has a lot of activities that Liam can utilize such as games, books, etc. and we can create pages as we go. He does a great job of telling his therapist Hi and Bye appropriately. :) She also sees when he chooses not to participate and he gets in trouble. I think that's a great thing! 

 We've also implemented using a PODD for quicker home access and communication. I'll explain more on that in another post but using two forms of communication, obviously along with speaking to him, are really helping his communication emerge. I'm amazed at some of the things he says while at school and love hearing how supportive his teacher and one to one are with trying to reach my wee man.

What is the deal

So google changed my ability to keep my blog name. I have to pay to have a google account just to pay to keep my website name. So, in the process of the craziness this school year I haven't actively pursued getting it done. So now, here I am, trying to figure out what to do and how to do it, meanwhile my old address at j-ustm-e.com shows as invalid. I have so many updates I need to make so if you are still here, please bear with me. 🙏🏻