The good and the bad

So, Ben had his pulmonology appointment on Thursday. His doctor said he is doing much better. His lungs sound really good. Even though he had a slight cold at the appointment, she didn't hear anything to worry about. We went over what to do should he get sick, his asthma action plan and meds. She refilled his inhalers and gave us another spacer. And then, she said we could come back in 6 months! Not 3 months, 6! So, we get less frequent appointments with this doctor too. Which is good. The less I have to drive to Arlington Heights, the better for me :)

Playing while waiting for the doctor

We then got to go home, or rather go to school and pick up his sisters. This weekend, Ben also had a lot of fun visiting with his cousins, nana, and his grandma and grandpa. Grandma and grandpa were in from Indiana. So we went over to his nana's house to celebrate his cousin Alan's 14th birthday. And on Sunday, we went apple picking in Woodstock. So, he had a very fun filled weekend!

Eli and Ben having a snack

Klara and Alan reading together

Grandma holding Ben and talking to Eli

Anthony and Abby playing soccer

 

Eli and Ben playing with a Fisher price pig

Apple picking

Showing off the goods

Finding more apples

Today, Ben was back in school after his long weekend. No phone calls from the school. I was happy since I was halfway expecting the school to call with SOMEONE being sick. Seeing as how the last 2 Monday's in a row, I have had to cancel my clients. I figured, Murphy's law and all, I would end up cancelling again today. But no, everyone was good. No one was sick. Well, that was until the end of the day. At pick up line, Ben's teacher came up to me to tell me that Ben's ear was bleeding during nap time. And then she showed me his ear which was clogged up with lots of blood. So, I called the pediatrician and made an appointment for today. We were seen right away. The pediatrician said that he couldn't see all the way in to his ear because of the blood clogging it up, but, from what he could see, it was quite inflamed and possibly ruptured. His ear tube seemed to be in there still, but he could not tell for sure. So, since he is already on an antibiotic for his GI issues, he did not want to add another one. So, he put him on an ear drop to help the ear infection. If the bleeding has not stopped by Wednesday or Thursday we need to come back. And we also need to be rechecked next Tuesday. But, besides that, he is doing great. And he is all set for his next PT appointment this Thursday. Which, I can't WAIT for her to see our enormous trampoline! That will be another post though :)

Ben is still sick, going on day 5...

Honestly, we have no idea where Ben picked up this recent illness. It may have come from school. Or it may have come from the grocery store, or a doctor visit. But, I felt the above was prudent to post as cold and flu season is upon us. We are now on day 5 of diarrhea for Ben, and it is not just the occasional once in a while diarrhea. It is all the time. To the point that he was in the ER for re-hydration yesterday and is now limping or refusing to walk completely. The doctor yesterday said this could be because it is a bad virus and he feels really weak and that is how the body aches are manifesting for him. He is still barely eating anything. We are trying to push fluids as much as we can. So, yes, weakness is a definite possibility. And with his immunosuppression, any virus will most likely last a lot longer than any of his friends. He seemed to be getting better last Thursday and Friday. And then Saturday it got a lot worse and that's when we ended up in the ER yesterday. And today he is seeming a little better with the diarrhea, but he is very weak and complaining of pain in his legs. If he still won't walk tomorrow, he has to see his pediatrician. Who he just saw last Wednesday as well. It is possible that all the diarrhea depleted all the magnesium in his body. He is already very low on magnesium, that's why he takes supplements. So, with diarrhea, it is very possible it got completely depleted. And the pains he is feeling are muscle cramps.

So far, I had to take off last Wednesday, and then again today because Joe is out of town. Which, don't get me wrong, I am happy to stay home with my baby when he is feeling bad. And, I am so grateful I have a job that lets me rearrange my whole schedule to another day. I have filled up my entire day tomorrow with my clients from today and my clients I normally see tomorrow. And Joe is staying home tomorrow to bring the kids to school (We have yet to see if Ben will be able to go) and pick them up so I can see my last kiddo at 3:30. But, I just want to say, I don't even think about it. If he is sick, or if the girls are sick, I keep them home. I don't medicate and send them to school. I would hope that anyone who thinks about doing that, thinks about Ben and looks at the above and thinks again, or look at the pics of Ben below. Think about who you might get sick and how bad it might get for them. It might be a simple illness for your child, but it might be a really long illness or even a hospitalization for a medically fragile child. This is what Ben has looked like the past couple of days. And he has been waking up at least once an hour screaming in pain at night. Please think before sending your child to school sick.

ER visit yesterday

Didn't even want to get back on the bed. And complained when I tried to put him there.

PT update

Ben has started back with PT once a week. It was recommended at his 6 month meeting that he go back up to once a week to give him a boost before he ages out at 3.  His PT Was having him do some "step-ups" and "step-downs" off of a stool we have and watching how he did it and noticed that he still twists his body to step-down, thus using his side muscles instead of his quadriceps. His quadriceps are a bit weaker. Also, his left side seems to still be a bit weaker than his right side. This could be due to many many wires that were in his legs. She did ask about that when we were talking. She also mentioned getting a trampoline to work on his jumping skills, which, we now have.

Jumping in the trampoline with Klara

As soon as it came, we blew it up and all the kids wanted to jump in it. We got Ben in it and he did about 5 jumps right away and then sat down. He then got out for a few minutes. Then got a stool so he could get back in, thus doing more step-ups on his own! He did this many times over the course of an hour. He would get in do a few jumps and then get back out. He and the kids have been jumping in it and walking around in it a lot today. It is HUGE! We didn't really know how big it was when we ordered it. :/ It takes up most of the dining room. BUT, at least he will be able to work on a lot of his skills with this. Also, the girls can work off a lot of energy on days like yesterday when it was too rainy to go out. The other thing that the PT mentioned that she might want him to use are HipHuggers. These are lycra type shorts that are tight and are supposed to keep his hips aligned. He would only wear them a few hours at a time each day. And hopefully it would stop him from turning his hip out when he steps down off of steps. We are not sure when his next appointment will be. At the latest it will be Oct 4. But hopefully sooner. He is supposed to be weekly, but he has medical appointments the next 2 Thursdays that we can not move. An his PT is very booked up. She is trying to find a Friday that she can see him though. His next week appointment is Hematology. I am hoping his iron levels will look better since we have raised his iron. I am also hoping that his magnesium levels will look better since we not only raised his magnesium, but also spaced it out. Cardiology said that spacing it out instead of giving it all at once should help not only his GI issues but his levels. So, hopefully we will see that on his labs on Thursday.

And a pic of Ben and Joe. Just because.