A couple of busy weeks

We have had our share of a few busy weeks. Many of our days are filled with DR visits. On Monday (10-2) we saw Dr. Finch, the GI DR. He thought Brynlyn's weight was doing okay (she was weighing about 9 lbs) and so he didn't change anything with her feeds. She just needs to be a feeder and grower now. We'll go back and see him in 6 weeks for another follow up visit.

Tuesday (10-3) we saw Dr. Stewart. She thought Brynlyn was sounding great and very clear. She did hear a few crackles in her lungs and so we have switched her breathing treatments to every 4 hours to continue her clearing of her lungs from the pneumonia. Then Tuesday afternoon, we had a little scare with her medications. Our pediatrican caught that Brynlyn was receiving too large of doses of calcium and that the medicine had not been compounded as it should have. She had been receiving almost 9x more than the dose she should have been receiving. So they sent us STAT to the cardiologist's office to have an EKG done. It showed that Brynlyn has an "abnormal heart rate" which is correct because her heart is not fixed yet. But the "abnormal rate" was normal for her. So they were okay with what they saw. They were specifically looking for arrythmia (DEFN: An arrhythmia is an abnormality in the heart's rhythm, or heartbeat pattern. The heartbeat can be too slow, too fast, have extra beats, skip a beat, or otherwise beat irregularly.) They did not see anything, thankfully. Then we rushed over to the Sonoran Quest Labs to have Brynlyn's blood drawn for a CBC (complete blood count) and some other tests. The test results came back normal, amazingly. Another blessing from up above.

Wednesday (10-4) we had a home visit scheduled with CRS (Child Rehabilitative Services). They needed me to sign documentation in order to get Brynlyn signed up for the program. It's a program that is provided by the state. With Brynlyn's lifetime diagnosis of DiGeorge, she qualifies for it. This will help with DR visits, some financial aspects and follow up.

Thursday (10-5) we had an appointment with Dr. Christine Mohler, our pediatrician. She is so great and on top of things. We just love her and think she's awesome. Brynlyn received her first set of immunization shots (4 shots, yikes!) Interesting note, DiGeorge babies cannon receive live immunizations shots because it could cause complications to their immune system. So Brynlyn will only receive immunizations that are killed. Usually the live immunizations are given about 1 year old. She also received her first Synagis shot. Synagis is a medication that will help Brynlyn to fight off RSV, which could be potentially devastating to her. She will receive this shot once a month from October through March, which is RSV season.

Friday (10-6) Pat, Farrell, Candace, Kim and Jakob (Mike's family) arrived from SLC for Brynlyn's blessing. We were excited that they were coming and spending this weekend with us.

Saturday (10-7) Mom came to watch Brynlyn for a few hours so we could take the girls to see the new movie "Open Season" and then to lunch at Fuddruckers. The Jensen clan came with us and we met up with Ron and Judy Everett (Mike's aunt and uncle) for lunch. It was a fun day and it was nice to get out of the house for something OTHER than a DR visit. ha ha

Sunday (10-8) Brynlyn's Blessing Day!

Monday (10-9) Our first visit with Dr. Darrell Wong, the immunologist. He ordered some specialized blood tests for Brynlyn to check levels of her blood count and immune system. I'll take her this week to Sonora Labs to have her blood drawn. Then he'll be able to give us a better diagnosis about what her immune system is like.

Tuesday (10-10) Mom, Mike and I went to see Dr. Lacey (the pediatric surgeon). Today was day they replaced the foley tube with the Nutriport g-tube "button." Then we received g-tube training. It's going to be alot better than the foley tube, however, I'm nervous about it and am sure I will be until I work with it more. I'll post a separate blog and show some pictures of what it looks like on her.

Whew...that is a typical week in the life of Brynlyn.