Thursday, 7 April 2016

All Worn Out

Good kicking today
I am sitting up in my bed, electric blanket on, and Felix snuggled up next to me. The house is quiet and we can hear the rain on the roof. These special times are probably the only things I like about the cold weather. I can't really argue about extra cuddles now, can I? The rain is beautiful too. Felix has looked out of the window a few times tonight, and said, "Mum, it's raining!" He enjoys watching it from inside the house, but he's not so keen when he's outside getting wet!

Felix went for hydrotherapy, with his Physio, today. It was probably his best session yet. He really worked hard at kicking his legs and was consistent with it for the whole session. It really tires him out so I was pleased that he pushed himself. His Physio is amazing! She comes up with all sorts of creative ways to get Felix to work his arms and his legs in the water and she knows what will keep his attention. Today, she dropped a small bucket into the water. It was attached to a rope, and Felix had to drag the rope (which was really long), as fast as he could until he could grab onto the bucket. I was surprised at how quickly he was able to do it!

Goodbye to Luna today
About a week ago I mentioned about the Doctor wanting to see me about Felix's blood test results. I found out that he is really low in iron at the moment. This could be because of his ongoing bowel malabsorption issues, or it could be because of a supplement he is on which can be known to lower iron levels. I really want to keep him on the supplement because it's one, of a few he takes, that may slow the development of the plaques on his brain which will cause Alzheimers disease when he is older* The Doctor and I agreed to keep him on the supplement, but give him iron each day as well and we'll retest him in 3 months to see if things have improved. The good news; his thyroid levels are fantastic, and there is no sign of leukemia (also a lot more common with kids with DS).

This afternoon, Felix was really flat and grizzly so I've decided to take a day off work tomorrow and keep him home from school. He seems to have an upset stomach; the usual issues, plus the addition of iron supplements. He's been waking up super early; 4.45am this morning, and is ridiculously tired. The combination of tiredness and not feeling well is making him miserable so, I think a day home in his pajamas is just what he needs!! Whoever said "People with Down syndrome are always happy" hasn't met Felix when he's tired!
Some pajama selfies before bed.

In the time it has taken me to write this, a certain perfect (but grumpy), little man has fallen asleep right next to me. His foot is draped across my leg and he has his head on my pillow. His mouth is hanging open, his hair desperately needs a cut, and I can see a big graze on his chin from where he fell off a swing. He looks like a such a boy! I remember watching him sleep, as a tiny baby, and getting tears in my eyes because I was so thankful that he was mine. Nothing has changed. I'm looking at him tonight, and can't imagine my life without him in it. Sweet dreams!

*All people with Down syndrome will develop Alzheimer's disease at some point in their life. Some as early as their 20's and 30's, although there have been a lot of medical breakthroughs in this field in recent years. Hopefully, in Felix's lifetime, a cure will be found. In the meantime, we will try anything we can to try and slow the process.

No comments:

Post a Comment