Today was Arlo’s first annual review and although I’m shattered and feel like I’ve done 10 rounds in the ring (post-clinic headache anyone?!) it has left me feeling super grateful, motivated and positive. 💛
Arlo’s annual review took place at a hospital about an hour away from us. His usual hospital will see him for his regular clinics but this hospital will be where the full reviews happen each year.
We were sent a schedule for the day before the appointment and below is an outline of all the things we did in case anyone is interested to learn what we got up to - or if you have your first annual review coming soon. ☺️ (I’ve spread it across 3 posts as there is a lot here!🙈)
Ultrasound: Arlo’s first stop was an ultrasound where they checked over a number of his organs including his kidneys and liver. All looked as it should be. The liver will be increasingly important to monitor in the future as there is something called CF Related Liver Disease that can occur in around 10% of those with cystic fibrosis. It usually appears between the ages of 3 and 16 (although not always) and is caused by mucus building up and blocking bile ducts in the liver. This prevents bile from leaving the liver, which causes inflammation and produces scarring. It can be managed by drugs, but it is a serious health risk and (whilst very rare) it can require a liver transplant. What’s more, CF modulator drug therapies (like Orkmabi and Kaftrio) can be heavy going on the liver so they need to monitor the liver every 3 months when someone starts on modulators. 🙏
X-ray: Next up was a chest x-ray. By far the quickest thing they did! I lay Arlo on a table so the red laser ❌ markings were in line with his chest, then they threw a protective jacket over me and x-rayed the little man. The results went straight to the consultant at the children’s hospital and we were later told that Arlo’s lungs look clear and healthy. 🫁
Bloods: We had to apply numbing cream to the insides of Arlo’s elbows (anyone know what they’re called?!) an hour before his out-patient appointment as the first thing they did when we arrived at the Children’s Hospital was to take his blood. This was a pretty sizeable needle and it’s really hard for them to find the veins in small children so there was rather a lot of wiggling the needle around - and once in they took a pretty mega sample! But Arlo was a rock star - so brave. ⭐️ We will get the full results from this in a couple of weeks. They are testing for a number of things like the white blood cell count as well as vitamin levels (especially the fat soluble vitamins D, E and A that babies with CF have trouble with - vitamin K is a fat soluble vitamin but almost babies with CF have less of a problem with this one until they reach the age of around 6 when they may need to add a vitamin K supplement to the mix too.) As people with CF have trouble digesting fats, they also have trouble absorbing fat soluble vitamins (D, E, K, A)
Psychologist: This was the only part of the day that honestly felt like a waste of time - it might have been valuable had I not been trying to entertain/placate a 1 year old who had just had his bloods taken! But it was totally wasted as I was desperately trying to keep Arlo happy and it was an awkward stilted conversation. But what I gather is that if we wanted to, they can support us as parent caregivers and they want to work closely with us to help Arlo become self-sufficient with his CF and manage it as a part of his life rather than something that defines him.
Dietician: Arlo’s weight was taken and he is over 11kg and still tracking on the 93rd centile. The dietician reviewed Arlo’s food diary that I had completed for the last 3 days. This included info on bowel movements and nappies as well as everything Arlo had to eat and drink - plus how much creon (digestive enzymes) we gave him. The dietician made suggestions here and there - one being that I should pump in order to mix breast milk and whole milk to see if Arlo will take to whole milk better. (Which I will respectfully not be doing because I can’t bear to get my pump out again!) And the other pointer she gave us was to make sure we keep varying textures and flavours of foods. But perhaps this is where I kind of feel like it goes away from monitoring Arlo’s health (as she told me his weight gain is perfect and he is clearly eating well) and strays into the region of just commenting on parenting decisions. Sometimes I think that’s a real perk of having a baby with CF (cause I’ve had loads of support with weaning and breastfeeding that I wouldn’t have had otherwise) but at the same time it’s also a bit of a curse because no other parent has their decisions reviewed with a fine tooth comb. I don’t think the dietician had anything she needed to say but I think she felt like she had to suggest something!
Physio: This is where most of the changes will occur. It’s really important that Arlo starts to get used to coughing on demand and that we start to introduce good habits that will become key components of his physio once he is older. This means we will start to proactively ask him to cough at set intervals throughout his PEP sessions. And coughing in general must be encouraged and applauded. Plus lots more bouncing - as vigorous as we can manage! And as soon as he seems even vaguely ready to start blowing bubbles through a straw and other things like that, we should do this regularly too. The physios were also chuffed that Arlo goes swimming and told us to continue with lots of physical activities.
Paediatrician: Last up was the paediatric consultant who reviewed everything we had covered throughout the day and all the results that had come back. Overall they are really pleased with how Arlo is doing as of today. Although it was reiterated to us that things can change in a heartbeat when it comes to CF - things are going great right now but the reality is that Arlo could catch a nasty bug any time and it could cause all sorts of trouble for him. But all we can do is keep doing what we are doing and will keep loving life with our perfect little man! 💙💙💙
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