This last month has been a busy one for Harriet. From birthday parties to clinic appointments to her first holiday abroad! She is well at the moment despite me putting in ANOTHER phone call to the CF nurse this morning about a niggling cough. Sixteen months in and I still have no idea what we are dealing with here. CF is such a complex condition. She has only just finished an extra course of antibiotics for a bad cold and cough, and when I took her for her clinic appointment four days after completing the course I felt she was starting to show symptoms again after only being well for about a week. I was slightly worried as we were due to go away two days afterwards so I was given some powered antibiotics to take with us just in case the suspected cold developed.
At Harriet’s routine clinic the doctor we saw that day informed us that from reading her notes she has only had one month free of any antibiotics so far. Great. I do feel like we have just bounced from one cold and cough to the next but to hear that as fact made me worry. What does it mean? Is CF going to be worse and more severe for my girl? I expressed this concern to the nurse who was lovely and reassured me that they do see lots of children go through the same as Harriet when they are young especially when they have an older sibling. Nancy brings home all sorts of germs from nursery and she too has had her fair share of snotty noses this winter. It’s inevitable she is going to pick up everything. The only plus here is that Harriet has always responded well to the extra antibiotics and has never needed to be admitted for a two week course of IV’s although it has been a close call on a few occasions I think!
There was also a slight concern in that Harriet had only gained 100g which isn’t much since her last appointment. I mentioned that she has been going through a rather fussy stage, only wanting to eat sweets and puddings but the doctor made a note to monitor this closely. So much emphasis is placed on children with CF gaining weight. Because their bodies cannot digest fats properly it can be hard to put weight on despite taking enzymes before eating anything with fat in it. Cystic Fibrosis patients are advised to eat a high fat, high calorie diet which we try to do but now it’s become my mission to fatten her up! She remains on the 75th centile for her weight and 91st for height. In fact she had grown another two centimetres in length which was a positive.
Harriet’s percussion physiotherapy has improved so much lately. She is very complient at the minute thanks to the iPad and Peppa Pig – long may it continue. Our physiotherapist was pleased that we are now able to complete two full twenty minute sessions in each day. What was mentioned, however, was the fact that she is still not walking. She can crawl and sometimes does but her preferred method is the bum shuffle. She is so fast and gets herself all over. She tries to stand up and will hold onto things. Oddly she will push herself along on ride on toys but if you try to get her to walk she takes a few steps then either wants to be picked up of just plonks herself back down! On our recent holiday she became the star of the show at the children’s disco! Every night she bum shuffled herself out into the middle of the dance floor to get involved and the audience would clap and cheer for her! It was like being on holiday with a celebrity as people would see us through the day and not speak, just imitate her shuffle technique! At the minute she is trying so hard to stand but seems to be going about it in the hardest way without holding on to a piece of furniture and just going for it unaided. Anyway our physio is arranging for someone to come out to us to help get her walking in the next few weeks so fingers crossed this will help.
I had hoped that the warmer weather in Lanzarote would have helped with Harriet’s cold but it didn’t do much. She continued to present with cold symptoms for the week but only coughed a lot at night. At the minute I am doing her percussion therapy through the night too as this is when she is at her worst. She isn’t on any other medication at the minute and hopefully won’t be. I still can’t understand why the coughing is only happening in fits and starts. I hate CF! As always though she is her usual smiley, happy self. She is starting to say lots of new words too which is very cute. I am, more than ever, determined to keep on doing as much as I can to raise awareness and funds to give Harriet a brighter future. As always, your support, shares, ideas are all very much appreciated.
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