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!!!
Thursday, July 26, 2012
Tuesday, April 24, 2012
The Day Sydney Was Listed For Transplant
Fourteen years ago today Sydney was placed on the list to receive a life saving heart transplant. This is an open account of my feelings today and of her story as I have been able to piece it together from her birth family, and some medical records from the state when we adopted Sydney.
Sydney was one of the fortunate CHD babies as she was diagnosed in utero at 18 weeks with HLHS (Hypoplastic Left Heart Syndrome). Babies with HLHS have an underdeveloped left side of the heart and aorta. This is the side of the heart that provides the body with fresh oxygenated blood. They can look perfectly normal at birth until the PDA begins to close. They have to be placed on IV medications to keep their PDA’s open to provide their bodies with oxygenated blood.
When Sydney was born the Norwood surgery (the first of the three surgeries for HLHS) was still in its infancy, most likely she would have not survived the surgery. The only option for Teresa and David – Sydney’s birthparents was a heart transplant 650 miles away at Loma Linda Children’s Hospital (LLUMC). Primary Children’s did not provide neonate transplants at this time and their recommendations had been palliative care. Teresa flew to LLUMC alone when she was 32 weeks pregnant. Leaving everyone she knew behind – no husband, no other family just her alone at the Ronald McDonald House. While she was there her Dad died – because she was 38 weeks along she could not travel home for the funeral – She stayed the course and followed her plan to give Sydney the best chance at life.
Right on time Sydney arrived – 7 pounds even, and 20” long -- perfect looking on the outside with a massively compromised heart on the inside. Teresa’s mom was able to come and be with her when Sydney was born.
Sydney couldn’t be “listed” for transplant until she was 7 days old. Her testing took a little longer and on the 24th she became active on the list. Some babies wait weeks or even months – Sydney was lucky they received an offer of a heart the next day. Little is known to us about her donor – Teresa told me that he was 2 days old. I have tried to imagine what his parents went through. How does a parent say goodbye before they have really had the chance to say hello?
We have never met or heard from her donors family yet our lives are tied together forever. Their son saved our daughter – in what I can only imagine were some of your greatest moments of grief they made the choice to donate his organs. Thank you seems inadequate – even trite. How do you thanks someone for saving your child? As I type this I wonder where they are today – is today his birthday? Do they understand the awesome gift they have provide to Sydney? How in a way their son still lives on as his heart beats in our daughters chest? His heart has never failed her it was and is the perfect match in every way – it has been comfortable there from the start beating in her little chest.
Fast forward 18 months later – I went to pick Sydney up from an Aunt and Uncles home to have her placed into our home for foster care. We were the only medically fragile home open within 2 hours of PCMC. The day before had been the third time they had called us about her – the other two times I said “no”. I knew she was meant to come to our home but (and this sounds terrible now) we had four little girls, a foster/legal risk baby boy and I wanted to be done! I was 24 years old and had five little ones at home 10 and under – I must have been crazy! I didn’t know if I could do it with one more – and one with a heart transplant. I remember calling the transplant team and while on hold praying that they would let me off the hook. Nope – Marian told me how easy Sydney would be to care for….. My heart melted when I met her and I knew she’d be staying forever --
The next day we had our first transplant clinic at Primary’s – I was scared and then I met Dr. Shaddy. Talk about a “D” personality on the DISC (look it up). I remember him looking me squarely in the face and telling me that he would not have her bounced from home to home so if we were not committed to keeping her to move her now. What a ride it has been since then –
Our Sydney girl has overcome so many difficult things – massive infections, aspiration upon eating and aspiration with reflux, a feeding tube, a port, post transplant lymphoma, a zillion heart caths and biopsies, more infections/antibiotics than I can count, 7 sets of ear tubes, and I don’t know how many days totaled to how many months in the hospital. As Sydney become more well and could attend school on a regular basis we learned that she has some learning disabilities along with a genetic syndrome. These have never slowed her down – she just does things in her own way and on her own schedule. Sydney has been able to know and love her birthparents / families through open adoption. Sydney is one of the bravest people I know. She is feisty and a fighter.
I cannot imagine how different our family would have been without Sydney. Tonight an extra prayer of thanksgiving will be said for her donor and his family, for those who made her transplant possible, and those who continue to care for her. I have heard people say that miracles don’t happen – they should meet Sydney.
If you have not considered becoming an organ donor please consider becoming one –
Much Love,
Ang
Sydney was one of the fortunate CHD babies as she was diagnosed in utero at 18 weeks with HLHS (Hypoplastic Left Heart Syndrome). Babies with HLHS have an underdeveloped left side of the heart and aorta. This is the side of the heart that provides the body with fresh oxygenated blood. They can look perfectly normal at birth until the PDA begins to close. They have to be placed on IV medications to keep their PDA’s open to provide their bodies with oxygenated blood.
When Sydney was born the Norwood surgery (the first of the three surgeries for HLHS) was still in its infancy, most likely she would have not survived the surgery. The only option for Teresa and David – Sydney’s birthparents was a heart transplant 650 miles away at Loma Linda Children’s Hospital (LLUMC). Primary Children’s did not provide neonate transplants at this time and their recommendations had been palliative care. Teresa flew to LLUMC alone when she was 32 weeks pregnant. Leaving everyone she knew behind – no husband, no other family just her alone at the Ronald McDonald House. While she was there her Dad died – because she was 38 weeks along she could not travel home for the funeral – She stayed the course and followed her plan to give Sydney the best chance at life.
Right on time Sydney arrived – 7 pounds even, and 20” long -- perfect looking on the outside with a massively compromised heart on the inside. Teresa’s mom was able to come and be with her when Sydney was born.
Sydney couldn’t be “listed” for transplant until she was 7 days old. Her testing took a little longer and on the 24th she became active on the list. Some babies wait weeks or even months – Sydney was lucky they received an offer of a heart the next day. Little is known to us about her donor – Teresa told me that he was 2 days old. I have tried to imagine what his parents went through. How does a parent say goodbye before they have really had the chance to say hello?
We have never met or heard from her donors family yet our lives are tied together forever. Their son saved our daughter – in what I can only imagine were some of your greatest moments of grief they made the choice to donate his organs. Thank you seems inadequate – even trite. How do you thanks someone for saving your child? As I type this I wonder where they are today – is today his birthday? Do they understand the awesome gift they have provide to Sydney? How in a way their son still lives on as his heart beats in our daughters chest? His heart has never failed her it was and is the perfect match in every way – it has been comfortable there from the start beating in her little chest.
Fast forward 18 months later – I went to pick Sydney up from an Aunt and Uncles home to have her placed into our home for foster care. We were the only medically fragile home open within 2 hours of PCMC. The day before had been the third time they had called us about her – the other two times I said “no”. I knew she was meant to come to our home but (and this sounds terrible now) we had four little girls, a foster/legal risk baby boy and I wanted to be done! I was 24 years old and had five little ones at home 10 and under – I must have been crazy! I didn’t know if I could do it with one more – and one with a heart transplant. I remember calling the transplant team and while on hold praying that they would let me off the hook. Nope – Marian told me how easy Sydney would be to care for….. My heart melted when I met her and I knew she’d be staying forever --
The next day we had our first transplant clinic at Primary’s – I was scared and then I met Dr. Shaddy. Talk about a “D” personality on the DISC (look it up). I remember him looking me squarely in the face and telling me that he would not have her bounced from home to home so if we were not committed to keeping her to move her now. What a ride it has been since then –
Our Sydney girl has overcome so many difficult things – massive infections, aspiration upon eating and aspiration with reflux, a feeding tube, a port, post transplant lymphoma, a zillion heart caths and biopsies, more infections/antibiotics than I can count, 7 sets of ear tubes, and I don’t know how many days totaled to how many months in the hospital. As Sydney become more well and could attend school on a regular basis we learned that she has some learning disabilities along with a genetic syndrome. These have never slowed her down – she just does things in her own way and on her own schedule. Sydney has been able to know and love her birthparents / families through open adoption. Sydney is one of the bravest people I know. She is feisty and a fighter.
I cannot imagine how different our family would have been without Sydney. Tonight an extra prayer of thanksgiving will be said for her donor and his family, for those who made her transplant possible, and those who continue to care for her. I have heard people say that miracles don’t happen – they should meet Sydney.
If you have not considered becoming an organ donor please consider becoming one –
Much Love,
Ang
Watching Children Struggle
The past few months have been a mental health struggle around our house. Maggie has her issues -- that has not changed. However, something odd has been going on with Miquela -- she has been upset and having screaming fits and becoming violent. This has happened at work, her pro home, at respite and when she comes for home visits. We have done some mixing it up to see if less or more visits would make a difference and it has not. The question is if it is neurological, mental health or another developmental issue.
Yesterday Miquela had an emergent appt. with her neuro-behavior doctor due to a huge outburst and destroying her room, being suspended from work and the list goes on. As the appt. ended Miquela had a freak out about leaving and not having a treat. She began to kick the doc and refused to get up. Hospital security was call -- the hope being that she would calm down and be okay to get into the car. However, as we have seen for the past several months she continued to escalate. SLCPD was called and Miquela was handcuffed. The hope again was that she would calm however, that did not happen so she was taken to the psych unit on a "pink sheet hold". That means that she was a danger to herself and to others. I was in my yearly review for work as all of this happened. I came out to my desk to a message of all of the drama. I'm grateful to work where I do -- I looked at my co - supes and said I have to go. By the time I go there Miquela was in a obs room. She was slightly calmed. Her pro parent was giving them all of her med info, history of the past few weeks and I filled in the history. The psych unit is very efficent they had her to the floor quickly. However, she did not want to walk into the unit. Miquela stood by the door and wouldn't move. Eventually they had me come in and help get her settled with baseline vital signs, etc. We then met with one of the psych nurses to go over her history. They told us that we could visit and gave us the code number.
The pro parent needed to give her medicaid card etc for admissions so I stood in the lobby and waited with her stuff. Her phone rang and it was the agency. All I can say is I know for sure with Miquela I am done working with this agency. Her two workers have been unhelpful, disrespectful and can't communicate to save their lives. Her DSPD worker is awesome! On our way out I wanted to stop by the doc's office to make sure she was okay. We met for about half an hour and it was the doc's rec that Miquela be moved to a group home as she is a danger to herself and others. The doc had a reccomendation of another agency and I made a call to someone I know there to start the ball rolling to look for a home that might work.
I then phoned her DSPD worker -- who was glad I'd called as she was really confused because what the doc was saying wasn't matching up with what the agency had said. I told her how I had been asking for play therapy and a behavior plan since November, how the agency worker wouldn't return calls, and about Miquela's outbursts. The DSPD worker was shocked. I told her that we did need to move her and that I was concerned as the agency was upset that Miquela was in the unit.
At this point all is on hold until we can find Miquela a group home -- It is hard to move your small/big child into one but it is time. Stay tuned for updates. (This was written in Feb and I thought I had posted it).
Yesterday Miquela had an emergent appt. with her neuro-behavior doctor due to a huge outburst and destroying her room, being suspended from work and the list goes on. As the appt. ended Miquela had a freak out about leaving and not having a treat. She began to kick the doc and refused to get up. Hospital security was call -- the hope being that she would calm down and be okay to get into the car. However, as we have seen for the past several months she continued to escalate. SLCPD was called and Miquela was handcuffed. The hope again was that she would calm however, that did not happen so she was taken to the psych unit on a "pink sheet hold". That means that she was a danger to herself and to others. I was in my yearly review for work as all of this happened. I came out to my desk to a message of all of the drama. I'm grateful to work where I do -- I looked at my co - supes and said I have to go. By the time I go there Miquela was in a obs room. She was slightly calmed. Her pro parent was giving them all of her med info, history of the past few weeks and I filled in the history. The psych unit is very efficent they had her to the floor quickly. However, she did not want to walk into the unit. Miquela stood by the door and wouldn't move. Eventually they had me come in and help get her settled with baseline vital signs, etc. We then met with one of the psych nurses to go over her history. They told us that we could visit and gave us the code number.
The pro parent needed to give her medicaid card etc for admissions so I stood in the lobby and waited with her stuff. Her phone rang and it was the agency. All I can say is I know for sure with Miquela I am done working with this agency. Her two workers have been unhelpful, disrespectful and can't communicate to save their lives. Her DSPD worker is awesome! On our way out I wanted to stop by the doc's office to make sure she was okay. We met for about half an hour and it was the doc's rec that Miquela be moved to a group home as she is a danger to herself and others. The doc had a reccomendation of another agency and I made a call to someone I know there to start the ball rolling to look for a home that might work.
I then phoned her DSPD worker -- who was glad I'd called as she was really confused because what the doc was saying wasn't matching up with what the agency had said. I told her how I had been asking for play therapy and a behavior plan since November, how the agency worker wouldn't return calls, and about Miquela's outbursts. The DSPD worker was shocked. I told her that we did need to move her and that I was concerned as the agency was upset that Miquela was in the unit.
At this point all is on hold until we can find Miquela a group home -- It is hard to move your small/big child into one but it is time. Stay tuned for updates. (This was written in Feb and I thought I had posted it).
Monday, January 9, 2012
New Year New Goals
Yes, yes I know I truly SUCK!!! Life has a way of getting away from me which means I don't post. I think about posting and it just doesn't happen. At this point I have so much to catch up on as we have had birthdays, heart cath/biopsy and clinic visits, Thanksgiving, Christmas and New Years. I promise a great update very soon.
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