Hi everybody!

Long time, no see! Seriously! Where have I been?

The kingdom of Maisie the Great has been a pretty chaotic place lately. Our little medical mess is, as always, keeping us on our toes. Other than a little 36-hour scare, we've stayed out of the hospital. We have finally worked up the courage to take Maisie out of the house (quite the feat with all her equipment) and we went to a park nearby. A little boy coughing all over the place was a little too friendly with her, and when I talked to his mother she said he's getting over some kind of respiratory infection.

UM.

We took her straight to the ER, which may seem like a major overreaction until you realize that she has a severely compromised respiratory system and and her immune system is pretty tattered. What is a week of discomfort for that little boy could be a death sentence for Maisie. We took her to the hospital, she was admitted overnight and given a broad-spectrum IV antibiotic. They took cultures and sent us home a day and a half later with an oral antibiotic. They took more cultures a week later, but nothing has developed so hopefully we dodged a bullet.

Now, for some good news! And there is plenty of it!

First, Maisie has gained eight pounds since I last posted her weight, which puts her at 29 pounds! I think we'll throw an honest-to-goodness party when she hits the big three-oh. She also, believe it or not, grown A QUARTER OF AN INCH. In like, a month. My little munchkin is getting to be such a big girl.

Maisie is doing so well in therapy -- physical, speech, and feeding. We have actually almost eliminated the stander hour because she is upright in her walker so much. She is still having a lot of problems with fatigue, which we don't really understand, but she is in the walker (actually a gait trainer) 2-3 hours every day at least. She loves the walker. She loves having her freedom, and it's really unfortunate that the thing is so big it makes it hard for her to approach anything, like a table to play at, and it's impossible for her to pick anything up. She has a Comet Anterior Gait Trainer, which is the thing to the left and is quite the little speedster in it. The only problem is that she is in the upright and locked position -- she can't really relax. So we're hoping to get her a "pull" gait trainer, something more like a posterior walker. That would at least allow her to bend down and walk right up to tables and things.

She is doing so well with the trach. The incision site healed well and we haven't had any trouble with infections, etc. At this point we have experimented with a few minutes off the ventilator several times a day. I unhook her to carry her upstairs, change her clothes, etc. She tolerates it very well and is greatly pleased to be freed from her tubes. We've met with a respiratory therapist several times and are slowly increasing her to ten minute increments off the vent. Yayayayay! She hates the ventilator, and fights to breathe "over" it whenever possible already. We discovered at a recent session with the therapist that she starts to panic when she's off the vent, because at this point she is so used to having breaths taken for her that it is disturbing to be breathing entirely on her own. So for five minutes every day, while she's off the vent, we practice taking big, deep, slow, calm breaths.

The trach is, and always was, a temporary solution. Maisie hates it. I hate it. It's frustrating to be hooked up to a machine and connected to yards of cording all the time with an active five year old who is trying very hard to walk and talk. This is all really good news, but she is so hindered by the vent. She regularly disconnects herself from the vent (yay fine motor skills!) and then grins like a maniac as she struggles to breathe and play at the same time.

That's all for now, I guess! We are just making slow progress, taking it one day at a time. We are looking into a school program for Maisie, but with her increasingly complex medical needs it may not be possible.

Love,
Charlotte