When we arrived we weighed and measured Victor. He is 7.338kg and 67cm long (16.17lbs and 26.3in). He is following his usual curve on the growth charts (10th percentile), so the doctor was happy with him. His lungs sound clear and he has no sign of illness at all, so we are just going to carry on and continue to do his preventative treatment. It was very good to hear!
We spoke to the physiotherapist, who is also happy with his progress and says he may be an early walker since he is crawling early. Victor spends most of the time he's awake crawling around and playing, which is good exercise for him. We are just going to continue fifteen minutes of manual physiotherapy twice a day, which can be difficult sometimes when Victor decides to crawl away in the middle of it!
I also spoke to the dietitian about the types of food he's been eating, how much Creon (enzymes) he's getting in a day and what things are looking like coming out the other end. It's gross, I know, but it's pretty much the only way I can tell if he's getting the right amount of enzymes.
The last person I met with was our social worker. We are entitled to a Carer's Allowance and health care card for Victor because of his cystic fibrosis, which will cap all of his medications at $5.80. The paperwork is nearly done (it has been such a hassle, I can't even begin to say how annoying it has been) and until it's processed we have been getting temporary health care cards from her. We then went down to the pharmacy and placed our order for a three month supply of everything, which came to over $70 with the discount.
While I was waiting for the medications, I took Victor to get some bloodwork done. He was low in iron and Vitamin D last time and has been on additional supplements since then, so we want to find out if the levels have changed.
Poor little Victor had a bit of a rough time today. He was tired, as the appointments were scheduled at the same time he was due for a nap. He is also getting to the age where he realises some people are strangers, so he decided he would scream if anyone came near him. This made things interesting for the doctor trying to listen to his chest with a stethoscope, or the physiotherapist trying to see how well he was sitting up, or basically anyone who made the mistake of smiling at him today. He fell asleep for a little while, then woke up with a start when my phone rang and couldn't get back to sleep, so he grizzled and clung and wiggled the whole time after that. Having some blood taken was the absolute final straw for him. I placed him on the table and he started crying--huge sobs mixed in with coughs--as the very kind lady tried to find a good vein in his arm. I don't think the needle hurt him because she seemed very gentle and he didn't seem to notice it happening so I don't think he was in pain. I think he was just tired and didn't want to be poked and prodded at any more. He stopped crying as soon as I picked him up again and snuggled into me, and then started crying again when he was given a sticker, poor baby! Probably wondering what they were going to do to him now. He was very adorable with the sticker on his shirt though.
|Victor's sticker: 'I was very brave at the doctors today'.|
We went back upstairs with Mum and Felix as well to wait for the medicine, which took a very long time. Finally we got the car loaded up with children and the box of medications and drove through the crazy traffic; it was nearly 5pm and we had been there for three hours. Victor was not happy in the car and finally fell asleep again. After stopping to pick up dinner we eventually got home.
We will be back to do it all again in three months' time, unless Victor gets sick and we need to go in earlier but hopefully that won't happen.
I actually like going in to see Victor's CF team because I like to know how he's going and if any changes need to be made (today the only change is to slightly increase the amount of antibiotics he's getting, because he weighs more now). It is exhausting though because I have to juggle a baby and an enormous diaper bag and his medicine bag and then the new medication we're taking home with us that day, plus the doctors give us pieces of paper that I can't lose and have to then dig out of the bag (prescription to be filled, order for bloods, notes scribbled on tiny pieces of paper etc). It's especially difficult because Victor wants to get down and crawl, but of course there's no way I'm letting him crawl on the hospital floor. I definitely could not wrangle two kids at the same time so I am very lucky that Mum has been available to watch Felix for me. I'm hoping things will get easier when Victor gets older.
They've both been so good today, I think we should have an amazing super fun day tomorrow.