Having a child like Freddie with complex health needs means he sees alot of doctors. I did a blog post in Febraury that lists all his doctors/therapists. Seeing this many doctors means we spend alot of time at hospital or have people visiting us at home. Some weeks we will have 2/3 appointments, others only 1 & if we are really lucky none!
At first having so many appointments was totally overwheleming & draining. Spending hours down a hospital with two children under the age of 2 is hard work. But now it’s just a normal part of our life. We do it with very little thought now. Theres no mad rush or panic anymore as we are so used to them. They can be hard to fit in sometimes as they have to be on a day that my partner is off work so most of his days off are spent in the hospital. But it’s just sometimes we do.
This week we had our first joint physio & ot appointment. We normally see them separately every 2 weeks. They have made the decision to try & do joint visits to help us have less appointments & enable them to work together towards similiar goals. The appointment went very well.I can’t tell you enough how proud I am of Freddie. He’s doing such an amazing job. It bought a tear to my eye watching him during the session. Hes beginning to show the normal patterns of movement that the physio wants to see & ot can see a definate improvement in his hand use.
Our 2nd appointment of the week was with the diatician. Freddies weight has took a big leap up the charts & is now on the 50th percentile! Which is fantastic as a year ago we we struggling around the 0.4th. The aim now is to get Freddie onto 3 meals a day & try to lower his milk intake. He will continue to have a night feed to keep his calories up but will drop some of his afternoon milk & have a puree meal instead.
Taking Evie with us on appointments can be tough at times. Spending hours in a hospital for any child is bound to be boring. Shes had some good tantrums during our appointments. We were in a meeting with about 18 doctors & Evie decided this would be the perfect time to have a major tantrum! She has good timing! She also gives us plenty of laughs. At our last appointment with our paediatrician she left the room to go to the toilet. When she came back she announced to the room that she had just done “A MASSIVE POO!”
Theres so much positive news coming from our appointments at the minute. Instead of coming out feeling down i’m actually coming out feeling really positive.
I have written this post as part of the #definenormal blogging challenge at http://www.justbringthechocolate.com/define-normal/