Anyway it's great to be home, great to be back with my baby girl and my husband. Great to go to the toilet without having to hold the door handle to avoid someone walking in on you. Great having a bath without worrying about another parent walking in on you. BUT most of all great seeing Jason free and happy. His little personality is back, his little giggle is back.
How is he doing, well he isn't 100% right yet. The gagging is back again so we have had to take feeding a bit slower again. His stomach is still not right, big noises and that peristalsis movements - the alien is back. So from being able to do 200ml feeds back to 100ml feeds. Yesterday I had to go for my follow up appointment with the ENT and he started with bad gagging. It was very frustrating for me because I couldn't leave him at home and I couldn't go immediately either. I found it very frustrating as all bad memories returned. I thought he was better and this brought me back to reality and reminded me that I need to take things slowly. It reminded me that although we have gotten over this hospital stay Jason isn't 100% right yet.
On Friday we have polygamy which is a day procedure. I am seeing the urologist on Tuesday to discuss the operation and we will see whether to do the operation on Friday with the polygamy or on a separate day. I am nervous about the procedure but I know it needs to be done. Jason has had this problem for a long time and we need to sort this out. Once this is done we can investigate the kidney problem. Going back to hospital for the day isn't going to be nice for Jason or for myself. The thought of having to poke him again for a drip and bloods kills me but what can we do. I just continue to pray for our little man and pray for healing.
I need to get back to work soon as well. Jason isn't allowed to return to school because of his immune system. We have been looking for someone to look after and teach Jason from home while I go to work. Unfortunately we were not able to afford someone qualified as our budget does not allow for that. Hopefully the person we have chosen will be good for Jason and will be able to spend time with him and teach him colors, shapes, numbers, draw etc so I can go to work to help pay for the bills. It's always a worry trusting a stranger to look after your child. This is Jason's future that is in this person's hands. I have prayed about it and we just have to trust and believe that this person loves Jason as much as we do and really takes her job seriously and helps Jason grow and thrive. I guess time will tell. Some things are out of your control and you have to put your trust in complete strangers and believe things will be fine. I really wish Jason could return to school, it's something that I feel very strongly about as he loved school and loved playing and interacting with the other kids. I am very sad that I have to keep him out of school but he will just get sick and we will just end up back in hospital with infections. He has got combined immune deficiency which affects his ability to fight both viral and bacterial infections
So we still have a lot of things on the cards in the near future. A lot of new and scary things but we just have to take things one day at a time and see how we go.