Where do I begin???

I always thought as we got older that time slowed down -- I was wrong it speeds up. There is always something to do or somewhere to go. Tonight it will just be a brief update of how/where and what everyone has been doing.


Miss Miquela moved into her group home in March. It hasn't been quite what we had planned. The staff struggles to care for her and over the past two months has called 911 during her temper tantrums on at least four occasions. Most of the time we are finding that she has not received her seizure medication or it is a power struggle that could have been solve by implementation of the skills within her behavior plan. The past ten days have been beyond a joke -- I hope the agency can pull it together as we have begun to look for another placement. Every promise of communication, staff training, and staff support for Miquela's benefit has been met with "I'm sorry that we dropped the ball". Miquela's care while complex is very simple in a lot of ways. She craves a routine, predictability and rules. She must have her meds on time, a decent bedtime, good food and regular exercise. At times I think people forget that Miquela though 23 years old now is really just a large 4-5 year old. You wouldn't let a four year old have 10 choices for breakfast, go outside unclothed for the weather etc -- why on earth would you let her???? Stay tuned for new updates and my fingers are crossed that the agency can figure out how to dial the phone to reach us, flip through a folder for her behavior plan, and understand simple reasonable limits.

Sabrina was able to spend time with us in June and again for a weekend in July. We were able to have pictures of all 7 kids taken together on her first weekend up here in June. Sabrina has been working in a sheltered workshop close to her home. This is the second job she has had as she was let go from the first due to not being able to get along with her co-workers. During our vacation in St. George Sabrina announced that she wants to have a baby within the next year. YIKES!!!! Sabrina is very angry that she cannot live at home -- if you ask her we have only visited her twice over the past ten years. Nothing could be further from the truth however she is hurt and upset and fighting RAD. Sabrina called me at work the other day having a hissy fit that I wouldn't come down and get her (3 hours away) for a lunch bbq. We will continue to work on these issues but I fear they will be a lifelong challenge.

Maggie is doing very well. I think spending the weekend with her sisters has opened her eyes to how many options she has for her future that they do not. She has been better about helping and more cooperative with her little siblings as well as with Charles and me. She is getting ready for her senior year of high school. For the most part she will be taking "fun" classes along with making up the two she failed last semester. Maggie is developing a passion for baking and gardening. Her big accomplishment so far this summer has been cleaning out closets. During our trip to St. George three RM's were asking for her info, where she lived etc. She didn't quite get it -- so I think we are still a bit away from really dating. Also on a bright note she broke up with her high school boyfriend -- what a relief.

Caitlin has enjoyed the first half of the summer. She was unable to attend girl’s camp as she had breast reduction surgery ten days before camp. The surgery went very well and Cait was BRAVE. She was in the OR for just over 4 hours. Dr. Reuben removed just over 3.5 pounds of tissue. Her drains came out four days after surgery and her stitches just this week. Caitlin is very excited about the change and commented just yester day "Mom my back no hurt". I didn't know her back hurt before. I'm so glad that we were able to get this taken care of for her. Caitlin has been resting at home loving on Buddy dog and the cats. She has been using our bed to watch TV. Until about the 20th of August she cannot lift anything heavier than 5 lbs. Caitlin continues to talk more and more -- which is nice. I actually had to remind her twice the other day to "SSSSHHHHH". Something I never thought I would need to do.

Sydney is doing GREAT. She is having a low key summer swimming at Grandma Ada's and playing games. I have to laugh that Sydney was jealous that Caitlin had surgery and she didn't. Strange girl. Sydney is now up to a whole 68 pounds -- maybe she'll break 70 by Christmas? Overall Sydney has been healthy over the summer except for some minor ear infections. Sydney is due to visit transplant clinic in August. We do not anticipate anything out of the ordinary. Her heart works great! We have been getting to know more of the heart pt's here at PCMC -- it is interesting as Sydney is one of the "older" kids in the program.

Jon is enjoying a lazy summer. He mostly sleeps in and then helps clean up around the house. Doing yard work is not his thing as his allergies continue to get worse. Poor kid -- the outdoors is just not his thing. We have been working on his scouting -- I am not the much of the outdoorsy type but I am trying. He also has been busy riding his bike and skateboard. Jon loves to go with me to pick up our weekly Bountiful Basket full of veggies and fruits.

Zachary is excited about Kindergarten to begin. We were lucky and he will be in a full day program at the same charter school as everyone else. I don't know who beginning school will be harder on him or Grandma Ada -- they have been together since he was six months old. The worst part of Zachary's summer has been getting his school shots -- I'm pleased to say that the Nurse, Zachary and I lived.
Charles is driving for a company that hauls hot asphalt for roads. The nice part is he is home every night. He was even able to go with us to St. George for half of our vacation/my family reunion. It was slow getting started this spring but the job has increased in hours which are a blessing.

As for me I spent most of the month of June out of town. I spent the first week in NYC taking a class for leadership development and went to PHL to visit a client. The next week I was in town. The following week was CRAZY!!! I traveled to New York, the Dominican Republic, Orlando, Boston and LA. This was all in four days. We were visiting the local airports talking about how we could work better together -- For our next trip Columbia is on the agenda. I have never been to South America before, along with Puerto Rico, Ft. Lauderdale, and Austin. I think we'll do this in six to seven days. It will be crazy too but with the improvements we have seen in the month since our visits it has been awesome.



Thanks for checking in on us -- I will work on posting new pics of the kids.



Happy Summer all and be Safe!!!