Pictures

Miquela's Graduation

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

What A Best Friend Can Mean 18 Year's Later

They year I began 6th grade we moved to Layton -- I was angry. I had friends where we were moving from, a routine that I loved -- everything was familiar. The new house wasn't ready before school started for the year so every morning my Dad would drive Mandy and me up to the he house to wait for the bus on his way to work. To make matters worse our classroom was outside in a portable classroom, the teach was weird and too bouncy. Everyone seemed to know everyone except me. To make matters worse about two weeks into the school year the popular girls formed a club called the "Pink Flamingo's". In case anyone is wondering no I was not popular I was more of a bookworm/chatty Cathy. I felt so lonely. Being a girl that age is hard -- I know I've watched five daughters go through this stage. It helps to have a best friend. Angela was in my class -- there were two of us. I didn't think we would ever click. Angela played tennis and was great in math. I have no skills in any type of sport what so ever but I could tell you the names of all the countries in Europe and Asia without the map being filled in. She was neat and orderly and I was (and still am) a bit of a hurricane. We eventually did click. I remember the first time I spent the night at her house -- my first friend since moving 40 miles away over five months before. Angela liked me for me. She was so cool -- she had her own room (I shared with Mandy still). Her little brother didn't touch her stuff and she had an older brother who could drive. Her parents were amazing and kind. I loved to go to her house because it was quiet, and organized. Angela had a German Shepard named Inga and this huge cat named Mac. We did everything together. In junior high we had several classes together, shared a locker and spent hours on the phone. For the life of me I couldn't figure out algebra -- I tried really hard and when I was bombing Angela was the one who tutored me and helped me with my homework. She could always find the bright spot. We had each other to tell our secrets to, talk over ideas, or deal with our families. For me things were rough at home -- my dad had taken a job traveling all over the world for and my mom was having a hard time with it. Then the bottom dropped out of Angela's world as her parents separated and later divorced. Looking back I didn't appreciate how hard that would be for her. Like everything Angela has every done she handled it with grace and poise. Hindsight is 20/20 and I have to say she was always there for me more than I was for her -- oh how I wish I had been less selfish. Time marched on and we went to High School. Again we shared a locker, and a couple of classes. The drama of beginning to date and crushes gone wrong. We talked a lot about what we thought we wanted for our lives and how we would never "settle". This year was our last full year together as she moved overseas with her mom and her new husband. Angela came home every summer, and sometimes mid year as well. During the summer she worked at a camp which cut into our time together. Our interests changed but we would still laugh and be silly together. I had my drivers licence and Angela didn't. It was cool then to "cruise the 'Vard". We went to Ogden and drove back and forth Ogden Blvd. for hours. I don't think I had laughed that hard in a long time. It was pure silliness and I loved every minute of my time with her. I hated for her to have to fly back. I called her several times that fall as my anxiety was beginning to be harder and harder to control -- (it would take me years to learn how to control it and to this day it is still something I struggle with from time to time). Boy were my parents ticked when the phone bill came with the three hour calls to Japan. I need someone I could talk to who I trusted. I'm not one to have a ton of close friends who know my most inner private thoughts. To this day I still only have a few close friends who I trust with me. At that time she was in a great private school having experiences that were amazing and I was dating some looser. After high school graduation Angela came home to work for the summer at the camp. I was working in a nursing home at night. I had met Charles that spring and we were engaged by the time she got home. I begged her to be my maid of honor and of course she was. I remember her telling me that I was crazy to get married -- She was right in some ways. That is one thing about Angela -- she is very grounded in reality. Before Charles and I were married she sat him down and had a chat with him. Angela loved me enough to let him know that I mattered to her. I remember later she told me "God help him if he hurts you". True to her word she flew down from college to be with me and save me from my mom. We were not getting married until five o'clock at night -- my mom woke me at five in the morning. By nine in the morning I need to get out of the house. I went and got Angela -- we went to breakfast. Later we picked up Charles and went to lunch. We drove back up to what would be our duplex and collapsed on the couches. Angela and I talked for most of the afternoon, as long as we could before I had to take her home to get ready and me to the church to get ready. Angela was there to help with my dress, flowers, and keep the anxiety at a minimum. Marriage, children and time changes things.... We would talk a couple times a year. When we got the girls she thought I was nuts and looking back -- I was. I wanted her to see that my chaos was okay and that I was okay. I was so proud of her and wanted her to be proud of me. Angela graduated from college first a bachelors degree, and eventually a doctorate. From what I understand she is tops in her field. We've drifted apart and at times I miss her something fierce. As my girls reached the 6th grade I understood the need for that special friend for each of them. It made my memories of her even more precious. I know the life changing impact of a best friend -- Angela blessed me with that. This weekend Angela married. I hope she found the one who will treat her as she should be treated. Who understands and knows her value, and what an incredible woman she is. Someday I hope to return the favor of the "God help him if he hurts you" speech. For now I wish her every joy and happiness.

SNOWZILLA

Snowzilla – 5 massive weather fronts in five weeks – What the HECK??? Someone get Mother Nature some Midol, a coke and dark chocolate! Anything to calm her down and fast. For those of you who don’t know me well I work for an airline – NYC’s hometown airline thank you very much. Where all 5 count them 5 storms have been gunning for.

What does this mean for me out west in Utah? Long hours at work – worried for my groups traveling, my crew that is working and our Northeast teams as well – don’t think I forgot you Chicago! It means enforcing mandatory OT, picking up food from our leadership team to feed my crew, being a therapist, mother, supervisor for my crew, trying to remember to be kind and caring even when I’m so tired I can only see double.

Somewhere in all of this I still need to be a wife and mother – oh the balancing act. I am so grateful that Charles is home every night – this would have been all but impossible to do with him gone six days a week. He has been taking care of dinner, meds, baths and homework. Talk about a transition for him. As for the job front – he is working at Nutty Guy’s for now. He is unsure what he is going to do long term but some money coming in is better than no money.

Anyway I should go – My goal is to really update with pics and everything very soon. I need new pics of all my kids – it is on the to do list.

Much love!