One day at a time

Here is John at the Tracy Aviary with all the kids today!

Still just one day at a time.  One of these days life might slow down, but every stage seems to be hard in its own way. Overall John is doing as good as could be expected. He is slowly gaining back some strength. It is super hard for him to go up and down the stairs - so he does it as little as possible each day. Gratefully eating is going fine and things taste pretty normal to him.  He has not been nauseas in a long time. He is having trouble gaining weight back though.  He is on a crazy amount of steroids and it causes his metabolism to be pretty high.  So, weight gain is not happening and the steroids also make it very hard for him to sleep.
John has always liked cooking and now seems to like it even more. He is feeling good enough to be helping in the kitchen and has been doing more baking than ever. It is pretty nice for me to get a little break from that. One morning I woke up to a text from John. He couldn't sleep and literally got up and midnight and made a breakfast casserole and put it in the fridge :) He sent me the text at 1 am. He has also made pretzels, banana muffins, and several dinner dishes this past week. We will have to work out a schedule of who cooks when now :)
The kids only have 3 more weeks of summer.  I really feel like their summer has been robbed from them. It is going by way too fast and John and I spent way too much time at the hospital. And now he has about 4 appts a week. It is so hard to schedule things to do with them. I am trying though. The kids are doing ok, but I sense that they are not sure what to think. The steroids are making John more irritable and so that is hard for us all to be patient with him and it is hard for him to be patient with all of us. They are not use to him being home and it will be at least 1 -2 years before he will have enough of an immune system to go back to work. Just a lot of adjusting.
I am doing ok. And really ok is about it. Some days are super hard and I am not sure how to do everything. I am not sleeping much because John is not sleeping much :( I do not do very well without sleep and it makes me impatient and emotional. A few days ago Emma came down with a sore throat and then a fever and now Jenna has the same thing. That makes things so much harder. We have had way too many fevers in the past 9 months - it is awful.  I am not joking - more than we have ever had in all of the years put together. And John can not help with sick kids and I have to keep sick kids away from John. John has an appt tomorrow morning so today I have been trying to figure out what to do with the sickies.  Luckily my sister in law Rachelle said she can come watch them. I am so grateful for her and other family near by who are willing to help. John is not driving yet so I need to take him to every appointment. I always want to be at his clinic appts. John does not always remember everything the Dr's say. But, one day he will be able to drive himself and go to his lab appointments and PT by him self. He will probably have a clinic appt at least once a week for a long time.
Today was a hard day for me. We wanted to go to the Tracy Aviary this morning with the kids. Some of the kids did not want to go and were complaining. I was trying to get everything done this morning and no one was helping, kids were tantrumming. We finally get there and there is a super long line. Isaiah has like 5 BAD tantrums while we were there, John was yelling at him, it was hot, it was crowded. Just not super fun. I was tired and grumpy. We get home and get the kids lunch and in quiet time. I was supposed to take the kids to Seven Peaks, but was not going to with all their attitudes. Then Emma's fever came back and Jenna had a fever. I just was so done with today when it was only 1 pm.
Not every day is as hard as today though. I am just feeling so many things right now. In one way I am so ready for school to start. It will make getting John to appointments so much easier and I can keep the house cleaner and get my schedule back. But, then I feel guilty and wish summer was longer so I could play with the kids more and do more of what we wanted to do this summer. Since John can not go more the 45 min from the hospital for at least 100 days post transplant, it makes it challenging to do things. Just so many emotions.
Tomorrow will be a better day!