Battles against terminal illness, anxiety, and life!

Whoa Ho Ho!

The holidays are definitely in full swing. We have entered the rungs of a family with an Elf on a Shelf. Oh how I swore I would never have one. Alas, the desire for more kid giggles trumps my not wanting to have to add another thing to our already full to do list. So, I have whispered in our Elf Frank’s ear that my children should be taped in their rooms tonight. Go big or go home, right? Speaking of home, things are always changing around here. I am really good about updating Team Braden Winks’ Facebook Page, but slower to get things here. Perhaps it is all that effort into making kids giggle that keeps me from typing away at my computer. Here is a quick run down on what we have going on.

Today is Wednesday. It’s not Hump Day here, it’s Infusion Wednesdays! That means Braden has an infusion of gammaglobulins to help bolster his immune system. He has no IgG2 or IgG4. This treatment is administered at home with a small infusion pump and a tiny sub q needle. The needle is placed just under his skin for about an hour once a week. This is Braden sixth treatment, and we can really tell it is making a HUGE difference! This has been his healthiest winter in a very very long time. Thankful! Thankful! Thankful! I am not thankful however for his huge emotional response to them. Will today be the day that I don’t have to physically restrain him? Please oh please. Six year olds don’t like needles.

We won the battle for a nighttime pulse oximeter with an alarm. It has gone off three times. Twice were false alarms courtesy of me. The third was an honest to goodness alarm. This would have been missed entirely if it weren’t for the alarm. I just don’t know what more to say about that. I didn’t ask for the equipment just to waste the insurance company’s time or money. This mucous plug situation is really no joke. You must act and quickly. So, yay for an alarm to alert us to a problem! Whoohooo!

Braden’s wheelchair is expected to arrive this month! This motorized chair should greatly increase his independence. It is bittersweet as his parents. We watch his balance and stability continually decline. Children with A-T typically plateau at age six, but unfortunately we haven’t quite hit that plateau yet. Braden is over six and a half. It is what it is, but is sure stinks.

Braden’s room renovation is moving along. It is taking forever, but at least progress is being made. Next up is the installation of the zero entry shower. We still need flooring, a toilet, grab bars, and a few other things. So, we are working diligently on that. We are all really looking forward to seeing the project completed! It will be nice to have a room that doesn’t look like a hospital regurgitated. Hopefully we can get creative and tuck the big machines away while staying accessible. Thank you to everyone who has helped make this renovation possible and in advance to those who will be helping in the future. It is genuinely appreciated!

We have a surgical consultation on the 10th for his fundoplication and g-tube placement surgery. I will do my best to update after that consultation. We are having a hard time consuming enough calories and are falling down in the growth charts. By no means are we emaciated but eating is an exhausting challenge with an intentional tremor and the effort it takes to chew and protect an airway. So, the feeding tube will give him some extra calories that he needs.

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