Standing

Last week, Brett pulled up to a stand unassisted for the first time during his physical therapy session! This is a major milestone, and one that is very gratifying to see him achieve. The therapist has been working with him for about a year - since soon after he came home from the hospital, and she could barely contain her excitement and emotion! More photos to come on that, but as you can see on this one, the difference in the twins' size is striking.

Wordless Wednesday

Beautiful G

First Outpatient Infusion

Brett's first outpatient infusion of IgG went well today. I was a little anxious since we were going to have to just sit in the infusion room for hours and try to entertain Brett. He has had 2 or 3 IgG infusions in the past, but all have been inpatient, so I wasn't sure what to expect.

Brett looks a little rough after finally getting the PIV. This was taken at the beginning of the treatment.

We arrived around 9:30am and we finally got around to inserting the peripheral IV line around 11:00. The first attempt was successful but then failed. The second attempt was also successful, and it kept. It was in his right arm, and the "no-no" (Pedi-wrap) is around his arm to cover it. After all that ordeal, Brett was pretty tired and ready for sleep. The room is full of recliners and everyone has their own personal TV, which was pretty cool. I meant to take a picture of the room, but I forgot - so maybe next time. As you can see, we are not in a recliner- we got an adult size gurney. Brett was ready for a nap when the infusion actually started around 11:30. The nurses helped make us comfortable. We slept for 2 hours, and the infusion was done! And unexpected treat for me!

I am praying (and making lots of calls) that we get on the Operating Room schedule soon and have a central line put in before his next infusion so that he will not have the trauma of the attempted venous access again. His next infusion is scheduled for October 19.

*Breathe*

Brett's vest arrived this week! Click here to read my original post describing this device. It helps with airway clearance, which must be performed 2-3 times a day, every day, on someone who has CF. Until now, we've performed manual "Chest PT" several times every day. The way it works is that the hoses you see connect the jacket to the main machine, which sends air through to inflate the jacket. The jacket then vibrates and compresses at a high frequency and at various speeds and intervals to loosen the thick mucus from the airways.

Today was the first day we used the vest twice. He doesn't seem to mind it - and this afternoon he was relaxed enough to fall asleep on his daddy's lap while he got his airway clearance. I'm thinking of continuing the manual airway clearance at night because he usually goes to sleep and I put him straight in the bed. This vest will be a nice break from manual therapy every single time. It will also be nice to be able to count on the consistency of the quality of airway clearance when other people are responsible for the treatment. Also, when Brett is older, it will be very important to him because it means that he can be independent from us and still be able to get his treatments. It means he will be able to live away from home on his own and take care of himself without having to depend on another person to give him therapy.

Although it doesn't reduce the amount of time we spend on it (still 30 minutes for each session), it shakes all the lobes of the lungs at once for 30 minutes, versus us spending just 3-5 on each single lobe during manual PT. Therefore, it's very efficient and it's been proven to reduce hospitalizations for those who use it regularly. This device is going to ease the rigors of Brett's care quite a bit, and make our lives easier. We are very happy about that! Tomorrow he gets his first IVIG infusion.