Slacker Update

Forgive me gentle readers for I have sinned. It has been more than two months since my last post. Time seems to get away from me rather quickly these days. Now that school has ended for they year, and we have a plan to put all of the kiddo's in the same charter school my hope is for more time. Time is something that is precious -- much more than I thought it would be.


Today as I post I am sitting watching Sydney have her echo. Her labs have been drawn by some of our favorite people on the IV team. We even met two other heart families. Because Sydney comes in so seldom, we really don't know anyone else here at PCMC. There are a few blogs that I have followed but I'm always worried they will think I'm a stalker :).


Last month Sydney was diagnosed with a staph infection in her sinus'. She was placed on a ton of antibiotics and she improved -- it didn't every totally clear but the improvement was nice. Over the weekend the boogies were back and Sydney was crying a lot. That is one way I can tell when she is ill -- she cries a ton. We went to the walk in clinic at Bryner and say Dr. Hilyer. Dr. Hilyer wanted to talk to cardiology and then pick an antibiotic -- She called me an hour later and said Sydney was to start clyndomycin. Also, cardiology would like to see her this week. I was kinda unhappy about having to change Sydney's appt around with everything else going on. However, now I am glad we are here. Between last night and this morning Sydney's nose has exploded with greenness and she looks icky.

Her transplant visit today went very well. Sydney's echo looks great as always, labs are fine with her cyclo level a bit low. Dr. Molina wants her to see an ENT asap and we were able to get into Dr. Bradley tomorrow. They (Dr. M and Michelle) feel like she needs a deep sinus clean out and deep cultures. They also should look for PTLD there just in case. Just mentioning PTLD makes me nervous


Maggie has not been able to see her therapist for the past five weeks due to an insurance issue. It looked like at one point she was going to have to change therapists. However, as of yesterday post adoptions claims that it is all corrected and that the therapist can now get paid from January thru the end of April. Maggie is having a harder time maintaining control of her emotional outbursts. In some ways she is back sliding. It is hard to watch. I have a call into her psychiatrist about adjusting her medication. She made the dance team at school and has dance camp and trek in July. In August there is YW camp in Heber.

Miquela received her certificate of completion last Wednesday from South Valley. She was so happy. We had a bbq but for some reason I didn't remember to take any pics. My sweet Jen is getting licensed to take her as a professional parent. I am so grateful that Jen and Jon are willing to bring Miquela into their home for a time. I have some pics from the grad in her cap and gown -- she was glowing. Miquela also celebrated her 22nd birthday the week before. I can't believe our sweet girl is growing up. We also looked at sheltered workshops for her and she begins next Monday. We looked at a few places and found one that I think will meet her needs.

Sabrina graduated with a diploma!!! I don't know who worked harder -- Sue (her professional parent) or Sabrina. Charles and I drove down for her seminary graduation and she was just beaming!!! In the fall she will begin school to learn how to do hair and nails with the help of an aid. Sabrina has come so far -- we are forever grateful to Sue and Dave for all of their tender loving care -- they have helped make Sabrina who she is. She has an awesome foundation in the gospel and a love for our Savior.

Caitlin will be going to Spectrum next year (as will all of the school age kids). She was able to get in and I am very excited!!! Her study meds for her seizures are helping her out so much. Caitlin is talking more and more. She also has recently taken an interest in the young womens personal progress program. I would like to see her get her award if at all possible. She loves going to Grandma Ada's and swimming a few days a week.

Jon is growing up so much. He had his year end event for school. Jon forgot to tell me about it until the day of and told me that it was in the evening. A few blocks later he told me that he needed a costume of the Apollo. I figured if I left work on time I'd be able to pull something together. At 1030 in the morning he called me at work and told me that the program was at 100. I left work, stopped at Target and bought him a skort and a white towel. I found some clips to hold the towel on him and headed for the school. I made it in time to get him ready. He kept saying "But Momma I'm a boy not a girl. Boy's don't wear skirts!". I have some pics of him dressed up and being the narrator of a fable that his class acted out. Jon is enjoying his summer off -- he is nervous to go to a new school next year.

Zachary saw Dr. Klatt in ortho a few weeks ago. We have been successful with his stretching. He has enough movement with his tendons now in his ankles. However, Zachary is still walking on his toes 90% of the time. Dr. Klatt would like to have him see Dr. Gooch in rehab again and use botox in his ankles, then cast him again for a few weeks. We also purchased him "squeaky" shoes that if he walks with his feet down squeak. Zach loves his Grandma Ada and spending time playing in the park.

Charles is working for Charlie in Orem. He also is working some for Nate at Nutty Guys. It is so nice to have him home every night. We are growing closer together as a family with him home -- it makes me very happy.

As for me I went to NYC in May for meetings and a class. I love the city. I looked at a job posting there and Charles had a fit. Maybe Orlando if the correct job came along. Right now I am just enjoying the journey of being a supervisor and learning so much every day. My little garden is mostly planted. My next goal is to update my blog with new pics.

Thanks for coming to check in on us. Much love to all.

Ang