Follow-up clinics

Yesterday was a busy and exhausting day. There was a heat wave all across Toronto, and we had back-to-back appointments at SickKids hospital. 

The first appointment was with the Neonatal Developmental Follow-up clinic. 

Here we are waiting for the Nurse Practitioner to join us in the room...

The follow-up clinic assesses gross-motor, fine-motor, social development, language and learning ability at specific ages to determine if a child is developing normally. When a skill is found to be lagging behind age expectations, advice is given or a referral is made to the appropriate agency so that the child receives the support and therapy he/she needs. 

Assessments occur at 4, 8, 12, and 20 or 24 months corrected age. Certain children may be followed at 36 months, preschool and school age. 

Here's the NP doing her assessment. As we continued, she showed us many different tips and tricks. For example, how to promote and prepare Arabella for rolling. She could definitely use more time playing on her side, that's for sure!

Later an Occupational Therapist joined us and she showed us some more positions and things to look out for. 

We need to encourage Arabella to get off her back as much as possible. That way, the back of her head doesn't become too flat (it's already starting to flatten a bit). The OT showed us some great tips for 'tummy time' and how to keep Belle's hands and elbows tucked in (for weight bearing). We learned so many different things. 

Kiera and I were always a little timid to put too much pressure on Arabella's hands and arms (due to her fragile bones), but now we know her bones are fully healed and strong, so we'll encourage all of those things a lot more. 

All and all, it was a very informative session.

Here's how Arabella is plotting on the length and weight chart (she's still less than the 3rd percentile for both) - but at least she's on the chart!

Bella was so tired after the developmental appointment. She missed her afternoon nap because there was simply no opportunity - and then we had to head to our Respirology appointment. 

This was basically a chance to check out Arabella's lung situation, and discuss things like pulmonary hypertension, blood pressure, and even feeding difficulties. Everything is always connected in some way, it turns out.

Her lungs are slowly getting better. She's doing a good job of exchanging carbon dioxide, too. Belle was fully checked out and inspected 😊

For now we're going to keep her on supplemental oxygen. The extra O2 she receives is there to mainly help her pulmonary artery (so that her heart doesn't have to work too hard to pump blood into her narrow airways). The oxygen expands the airways, and it lessens the bloods resistance. But in the future (once she's off the oxygen completely) it's unclear whether she'll need blood pressure medication. 

Her worsening reflux seemed to worry the doctor. When Arabella aspirates, some of the milk will spill into her airways and wind-pipe, and that can cause inflammation and chest congestion. Over time it can cause damage to her esophagus, it can cause hoarseness, a chronic dry cough, asthma, sinus infections, and even pneumonia. Apparently, reflux can cause all kinds of issues. It's such a complicated condition 😕

The doctor told us to look into going back on motility drugs (such as Domperidone), which apparently increases the muscle tone of the digestive tract and keeps food moving better. He seemed to think it would help. Arabella was on that for a few weeks at the hospital until we decided to take her off the drug (after reading and hearing about some of the negative side effects).

Acid blockers, motility drugs...all of these drugs worry us but we're almost stuck in a corner at this point. Arabella's still on the acid blocker Omeprazole despite all of our reservations about the drug. So, at least when she vomits, it doesn't burn her throat and esophagus, but that's all it seems to be doing. 

On the topic of feeding...

Last week we went to a feeding clinic and the doctor told us to first try this hypoallergenic formula, in case Belle has a dairy intolerance. It smells absolutely horrible, though, so I can't imagine it helping Arabella's feeding aversion! 😄

Whatever we try at the moment, though, we'll never see immediate results. Arabella associates eating and swallowing with pain and discomfort, so it's going to take a long time to see any progress. This is our new reality right now, and it might even get worse before it gets better. 

In the near future we're going to be followed by a Dietitian and an Occupational Therapist, so there will be lots of eyes on Belle as we continue to deal with this feeding issue. 

We have a long way to go!