is what we found one day when we took off Jonas' mask. It was dried, so obviously it wasn't a gusher. But isn't that sad... why would he just randomly have a bloody nose? We suspect the dry winter air and a dry nose..I don't know, I've never had one myself so it's new to me.
We also had a visit with Dr. Swoboda this week. I'm so glad when Whit can accompany me on these visits as it is a very un-enjoyable one for Jonas. I have always been so grateful for my mom being nice enough to come with me the other times, but I think Jonas is comforted knowing that Mom and Dad are there. This visit went smoother than the past couple times.
One sad little boy... just done with PT and has had enough of pokes, tapes and measurements.Things we learned this visit....
* Jonas is the same weight 28lbs
* Jonas height 37 inches
* Jonas is hanging on to the last of his neurons which we measure using an EGG
(it gives a little shock and measures the reaction..not very fun)
* His medicine is not making him dizzy.
This is something that we've wondered about for a long time. Jonas always rolls his eyes in the back of his head and then squeezes them shut. Kind of like he is trying to get his bearings. Well this is because his eyes are dry. He is squishing them shut to try and moisten them and he has a hard time closing his eyes so by rolling them he is trying to close and moisten them at the same time. We will carry some eye drops with us know and hopefully we can make him more comfortable. Sad that it has taken us this long to find out.
* His medicine doesn't really have anything to do with his "gagging" moments. Every day at least once, Jonas will act like something is stuck in his throat and he is working to get it out. Some times it's no big deal and others he actually throws up and always has the potential to aspirate on that. Luckily, we've always been right next to all of his equipment, so we've been able to handle it. This is just part of his life. Not much to do about it really. Bummer.
* His teeth look good, his mouth looks good, his chest looks good, his range of motion is great..a little tight in places, but overall good.
It's always nice to meet with Dr. Swoboda, Abby, and crew. They are wonderful people!
Doesn't he look comfy...Love this little boy!!
4 comments:
Oh, little man...I'm sorry about your nose and the EEG--man, those suck. Poor guy.
We got some blood up today with Dakin's suction, and I think you're right--it's just the dry air.
Hugs to you guys.
Lindsey, I don't know if you ever wonder if people who read your blog care about and want to hear about the details (like things that you shared in this post) - WE DO. Thank you. Every time you write, it helps to give a window on what life is like for Jonas and for you and Whit. It is all well worth reading and helps us to "enter your world." Your voice for Jonas is something I value so much.
Thinking of you all today and praying as you keep on with the next thing and the next thing. Thanks again for giving it your all.
Love,
Cathy Groves
Thanks for the update. Iam so happy that he is not dizzy. Poor guy I felt so bad for him when I would see him roll his eyes back. He is still cute with a bloody nose. We love you......
riley does the same thing with his eyes and i keep thinking maybe he has something in them. maybe he has dry eyes as well.
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