Our Meeting

We will be having our meeting this week at our new day which is Tuesday.The meeting will still be at the same time and in the same room.Jami,thank you for volunteering to bring a treat for this meeting.I am hoping that this change in day will be better for more people.

See you all Tuesday the 26th!

State Fair

We have recieved free admission to the State Fair this Thursday the 21st of August.If anyone would like to go with our group of families affected by CHD's,please let me know.We get in an hour earlier so we will be meeting at 11:00am.

Hope to see people there!

Changes confirmed

It has been decided for certain that the meetings will now take place on the last Tuesday of every month.I hope that it is not a inconvience for anyone and I hope that this way we may get more people wanting to attend our group.The meeting time and place will remain the same.

The meeting

Last Thursday's meeting was a low key meeting with only Jami and I in attendance.We celebrated Jami's birthday on that night since we did not have a meeting in June and her birthday is June 30th.We spent the two hours catching up since we hadn't seen each other in several months.Towards the end of the meeting we made some doorknob decorations for the kids who were stuck in the hospital.They were taken up to the 6th floor Pediatrics after the meeting was over and given to the kids in the ICU.

This week

We will be having a meeting this week on Thursday at 7:00 in the same room that we have been holding it.I would like to know who plans on comming this thursday.I know for a fact that the parent support group will have Dr. Crockett as a speaker.He is one of the pediatric anesthesiologists at Sutter.

Hope to see a lot of people there.

Changes

We have had to switch the day that the teen and young adult support group will be meeting.We will now be meeting on the last Tuesday of every month.It will be in the same room at the same time.

Sorry for any inconvieniece.

Volunteers Wanted

I am in the process of helping organize a celebration of summer party in Sacramento for kids with congenital heart defects and their families.The date is August 6th and we would need the volunteers to arrive at FairyTale town at 9:30 am.

Please let me know if you would be willing to help out.Or email me with any questions at alexiaboesen@hotmail.com.

No Meeting

The meeting for June has been cancelled as well.Jami and I will be out of town.We will start up the meetings again in July.Maybe the haitus will give more people a chance to find our grop and join us for the July meeting.

Have a safe and happy summer!

Change of Plans

It looks as though we will not be having a meeting tonight.I cannot make it and I have not heard from Jami if she would be comfortable leading it on her own at this point.I will also not be at the June meeting because of a planned family vacation.Jami has graciously offered to lead the group in my absence that day.

As always if you know anyone who might benefit from this group,please send them the link to this blog.

I will see you all in July!

Busy Day

Yesterday was quite the busy day.I had to go down to Salida which is basically in Modesto for an interview.It was an interview to be a camp counselor at Camp Taylor.The drive down there was an hour and a half and the interview itself was 10 minutes long.I liken it to an EKG and how it takes loger to set those up than to actually do the test.

Don't forget that this week we have our monthly meeting.It will be Thursday at 7:00 at Sutter Memorial Hospital.Hope to see a lot of people there.

Finally an update

So sorry about the very belated update on our group meetings.On April 24th we had our second meeting and I was there along with Jami and Nick(I have known Nick forever) We mostly chatted about our health,the NBA playoffs and Camp Taylor.

Also that week I was hospitalized with an abnormal heart rythm.Talk about a long wait in the ER.I was admitted at about 5:00pm in the ER and I was not sent up to a room for overnight observation until 11:00pm.I was released the following morning.

We will be having our next meeting on May 29th at the same time and same place.Hope to see you there!

Next Meeting

Hello all!

Wanted to remind you all that we have another meeting Thursday at 7:00 at the same place.I really hope that you can all make it to the meeting.I will be bringing treats to share for that night.If you have any questions,don't hesitate to call me at (916) 541-2141 or email me.

Can't wait to see everyone.

Camp Taylor

I am going to be volunteering as a camp counselor at Camp Taylor this summer.It is a camp for kids with heart defects.There is a Youth Camp,Teen Camp,and Family Camp.I was a camper several years ago but since have not been able to attend as a camper or a counselor.So I am really looking forward to this summer.

Tonight

Tonight was our very first meeting and we had three to start with and we spent the time getting to know each other and we had delicious brownies made by Jami who is a co-starter of our group.The next meeting will be April 24th at 7:00 at ther same place.We are hoping to get more people involved with the group and we thank those who made the trip to the first meeting (Jami and Kelley.)

Tonight was very fun and we hope to have many more nights like this one in the future.

Tomorrow

Is our first official support group meeting at Sutter Memorial Hospital at 7:00 pm.I really hope that this gets off to a great start because I feel that there is definitely a need for it.If you have any questions,feel free to call me at (916) 541-2141.

Hope to see you there!

Reminder

I wanted to remind everyone that the first teen/young adult support group meeting will be on March 27 at 7:00 pm and it's at Sutter Memorial hospital.If anyone can bring a treat to share,please let me know.

Please let me know either by a email or a call or even posting a comment on the blog if you plan on attending the first meeting.

Poll

I wanted to let everyone know that I posted a poll just to see how people came across this blog.I find it interesting how people find the same thing so many different ways.

Collecting Stories

I am collecting stories of teenagers and young adults to help others who are just starting on this road.Do you have a story you would like to share?

First Support Group Meeting

The first support group meeting will be on March 27th at 7:00pm at Sutter Memorial Hospital in Sacramento California.If you are planning to come please leave a comment here or email me at alexiaboesen@hotmail.com. We hope to have several members at our first meeting.If anyone is coming and could bring a treat to share,please let me know.

Thanks!

My story from my mother's perspective

Where do I start..... 22-years.........Alexia was born December 1985 (yikes!!) with a heart defect that was almost unheard of at that time. She had a Double outlet right ventricle with multiple VSD's. At a couple days old she had a PA Band done, at 6 months she had BT Shunt and then at 4-years she had her "repair".During the first year of her life, I left her father and moved back to Sacramento with my mom (born and raised). All three of her heart surgeries were tough on her and me. Her hospitalizations were always long and the recovery was always difficult. She did have some great surgeons but they were really in the beginning stages of Pediatric Cardiac Surgery and everything was experimental. When Alexia was young, they just didn’t know much about heart defects in general.When she was 11-years, we found out her Aortic Valve was leaking. I knew it wasn’t going to last forever, but I was still hopeful that we could put it off a bit longer. I really wanted to wait as her surgery at 4 years of age was scary beyond belief. Her doctors kept close watch on her, but all of a sudden, out of no where, she was hospitalized and surgery needed to be done....NOW. Her recovery was long, it lasted about 6 weeks. They had a hard time getting her extubated but she ended up thriving afterward. She was a whole new child, everything seemed good. Then, out of no where, puberty hit (literally right after her heart started working the way it should have!). In the meantime, I had met Carl, a Charge nurse at Sutter Memorial, PICU (where she had her surgery at 11-years), he was very active in her care. We were married 2-years later and now have 5-year-old Aden. Alexia had her annual echo in June of 2005. Her doctor found out her aortic valve was leaking......again! We were wasting no time this time around. Her heart cath was scheduled for one week later. It turned out that Alexia not only had the leaky valve, she also had a "false" annurysm on her heart. All I could think was that this was just lovely! *sigh*After that, the next step was to meet with the doctor and discuss our options. Thankfully, Carl knew of a great surgeon. Carl had worked closely with him, recovering his patients, he had the utmost faith in him and only wanted him to do it. We were given the option of Stanford, but we knew who we wanted. I was scared beyond belief; remember all Alexia's surgeries were very hard. And here I was, sitting there, getting ready to do it all over again. I had to once again watch my daughter be taken into surgery.July 11th, 2005 arrived, it was time for surgery. It was a lengthy surgery due to the scar tissue from her previous surgeries but she swam through it! I was so proud of her. She was extubated early the next morning. Shortly after, she was sitting up drinking water and getting her hair brushed! She was home 7 days later. This was a record setter. She had no set backs and has so much energy it is amazing. She is currently only on one med, Coumadin. This was something that I never dreamed would happen. She has never been on only one medication. For Alexia whole life she has taken 3 or more medications and now she is down to 1. She has a St. Jude Mechanical Valve which is supposed last 30/35 years!!!!! She is taking 20 units at Sacramento State. Alexia's surgeon is the most amazing surgeon I have ever met; he is skilled, highly intelligent and loves his patients. Obviously skill plays a huge factor, but knowing just how much he cares makes him the wonderful surgeon that he is. He sat in Alexia's room surgery day until well after 2:00AM, just to make sure she stayed stable. He was there everyday until she got discharged.

What we are

This is a blog to keep you updated on news of a developing teen/young adult congenital heart disease support group.We meet on the last Thursday of every month from 7:00-9:00pm at Sutter Memorial Hospital.This support group is being formed because we feel that it is not only the parents who need support but also the teenagers and young adults that are or have gone through this.