Friday, October 12, 2012

5 Month Checkup

On Thursday, Victor had a checkup with his doctors to see how he's going and to make any changes to his treatment as he's getting older. We also met with the researchers in charge of the study he's involved in.

Victor has moved up to the 'big kids' clinic, which is a large outpatients clinic that sees lots of different patients. Along with Respiratory medicine there are a few other departments operating there. There were no other patients with CF there that day so we could sit in the waiting room; if there are other CF patients or there's a very long wait we will be given a pager so we can walk around and go somewhere else while waiting to see the doctor. It's still at Princess Margaret Hospital, just on a different floor.

When I arrived, a researcher was waiting for us so I sat down with her in the waiting room and we went over the study diary I have been filling in. We then weighed and measured Victor (he's up to 5.9kg!) and we also took his temperature, heart rate and breathing rate for the study.

We then went to see the physiotherapist. She is happy with how he's developing; we went through a few more exercises and stretches he can start doing now. He's not quite rolling over yet so she taught me how to encourage him to roll over. He's a very relaxed baby and is pretty happy wherever he is, and I honestly just think that he doesn't want to roll around. But I actively encouraged him to roll over today and he can get up on his side quite easily so I think it will happen soon.

Next was the dietician, who is also very happy with his weight gain. We talked about adding more foods to his diet, he is now able to eat anything at all so we can start giving him high-calorie food to increase his weight. He's been having pureed fruit and vegetables with baby rice cereal twice a day for a few weeks and absolutely loves it; now we can start feeding him three meals a day and add butter and salt. The butter is for the fat content and the salt is basically so he gets used to the taste, as he will need lots of salt to stay healthy. Other foods that will be really good for him are fish, meat, avocado and eggs, so we will start giving him those very soon.

The bloodwork taken during his CT scan and bronchoscopy showed that he is low in Vitamin D and Iron. We're starting to give him Vit D and Iron supplements now, in addition to his usual vitamin supplement (VitABDECK). He had the blood test done before he was on any solid food so hopefully his levels will improve now he is eating 'people food' and he won't have to be on these supplements for very long.

Then we saw the doctor, who went over the results of the CT scan and bronchoscopy again with me. He looked at the CT images and said that Victor has some of the healthiest lungs he's ever seen, which was really good to hear! There is no sign of damage at all and no bugs growing in there either. It's great to be off to a good start in life.

While I was with Victor in the outpatients clinic, Felix was with my Mum playing on Level 7 again. He is potty training and doing really well. I packed his little potty seat in his Cars backpack with lots of spare clothes so Mum could be prepared, but he was so good and didn't have a single accident!

We picked up more medication for Victor, the new supplements and some more Creon (enzymes) as we were running low. The researcher had been waiting for us the whole time and walked us to our car with a box full of the study antibiotic/placebo. I felt bad that she had been waiting the whole time we had been in the clinic (three hours!) but she told me it's her job to follow Victor and she gets paid to be there (and apparently three hours is pretty quick).

The doctor also signed paperwork for our travel insurance application for our trip next year. He was surprised that most insurance companies will not cover cystic fibrosis, and said that he was happy for Victor to travel as he is so healthy. Now we just have to keep him that way!

Aside from the appointment, we have been home a fair bit recently because of Felix's potty training, but he is doing so well that we can venture out a bit more now. Our back yard has been out of action for a few weeks as the fence is being replaced, but it looks like it will all be finished by next week so we can finally go out and play again! Unfortunately to replace the fence they had to chop down the big frangipani tree out there; it was the only source of shade and quite frankly the one redeeming feature of this house. I might have to look into getting something out there to give us some shade. I'm thinking of getting some jasmine climbers in pots to 'replace' the garden that was removed. Felix has planted some capsicum seeds (bell pepper) and they have started to sprout! We are also planning on doing some Halloween craft this month; Felix loves painting and gluing so I have a few ideas of cool things we could make.

My boys!
Victor is looking a lot older now!

Capsicum seeds are sprouting.
What's left of my back yard. Check out the neighbour's PERFECT garden!


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