At 3:30 tomorrow Alexia will go have another 12-lead EKG and then get hooked up to a Holter Monitor for 24 hours. This will watch her rythym as she continues her daily activities and watch for anymore Long QT's or PVC's, PAC's or any other arrythmia that the Sotalol could cause. She is slowly ajusting to the medication and doesn't seem to be as sleepy as she was in the beginning. Please keep her in your thoughts and hope that there is nothing in either test.
Sunday, April 27, 2008
Alexia and I getting ready to leave for the event.
I have got to say this continues to be best event I have ever been to. My friend Lorraine bought the first grade several tables near the front of the room. I am sure we raised near the $100,000 mark. It was incredible.
The first grade (that would be our class) donated a Argentinian Dinner for 12 Saturday, June 21st, to celebrate the Summer Solstice. Experience a traditional asado (barbecue) prepared by Chef Christian Margedant, who will be sharing his favorite family recipes with you and 10-12 of your closest friends The wonderful Argentinian wines will be provided by Sacramento Magazine wine writer and Winery Consultant Elaine Smith, who will offer a dazzling champagne sabering performance. Round out the evening with a special tango performance!
Outside of the Iceland and Jamaica trip, this was one of the most popular live auction items. It finally went for over $2,000.
My item I came home with was a handpainted stool by the Games/Movement teacher Mrs. Ring. See below. It is absolutely beautiful. This was a nice get away for Carl, Lexi and I after a very stressful week.
Me, Lorrie, Lorraine and Svava
Did I ever say how much I love this school and every single person in it?
Saturday, April 26, 2008
Wow, I had so many excellent entries, it was very, very hard to choose. There are some really good writers out there! But after pondering most of the morning, I have to say I LOVE CanCan's post. Your Lavender doll and Silk Veil will be mailed on Monday! Please click on the Lavender Doll link and email me the skin/hair color options you would like. Also email me your address. I also was intrigued by the fact that she wanted to give the doll to her son, I love that. Congratulations!!! Her is her post:
I love the felted food, the Organic Cotton Veggie Set in a Crate, and the gnomes! I love all of the stuff: I am a big Waldorf fan. I am bookmarking this store!
I have two boys who I hope to raise with Waldorf principles. Here is a poem I just wrote because you said to be creative and a I really really want to win this doll for my 8-month-old!
For My Boys
Two little acorns
One comes fierce and fast,
Touching, Learning, Asking,
Exploring, Wanting, Needing,
Erupting, Exploding with spirit.
Small but mighty.
The other, sweet and slight.
Observing, Studying, Inquisitive,
Discovering, Waiting, Giving,
Tranquil, Serene, quiet comfort.
Pleasant and Soothing.
Both in the same garden,
Protected and supported,
Cultivated and Encouraged
To be Authentic, True,
Distinctive and Connected
Thursday, April 24, 2008
So the 12 lead EKG was a success and her Long QT is better. We arrived at Dr. Andy Juris's office yesterday at 9:00AM at I asked if he was the one seeing Alexia, the office gal said "He came in today just to see her", apparently it was his day off (sweats and all), he is a good guy. The Solatol is making her exhausted. Dr. Juris said her body will eventually get used to it but to take it easy. Try telling her that. She goes back next week for a 48 hour Holter. We did ask if we needed to add EP to our list of Doc's. Dr. Juris feels confident that we can manage her arrythmia's within his practice but if it gets to a point where we can't he will refer us to one.
So all in all, we are doing well. We are both looking forward to our support groups tonight.
Thanks for all your well wishes.
Tuesday, April 22, 2008
Lexi is home and resting now. She is now on 80 mg of Sotalol twice a day. She will go see her Cardiologist tomorrow at 9:00AM for a 12 lead EKG to watch a long QT, that started after the new med started. Let's not confuse this with the syndrome, this is something that can happen after the Sotalol started but will correct itself. She then will go back next week for a check up and a 24 hour Holter monitor.
When we arrived home we got Carl off to work, Aden had a playdate after school and we promptly fell asleep for nearly 3 hours. My mom picked Aden up as well as dinner for us. We were set for the night.
Please continue with the good thoughts and prayers as we continue with a few more "things" to get our life back to normal once again.
Well, well, well. Yesterday was quite the interesting day. Alexia normally calls me through out her days on campus and yesterday she called me and said a few times while sitting in her class she had some "fast heart rate" episodes. She said she thought she was fine though and she would see me at home. I had a meeting at Aden's school and Carl was scheduled to work. When I got into my car after the meeting there was a voice mail on my phone and Carl and her were on their way to the Cardiolgosits for a EKG. Alexia's heart rate had tipped over 200 and it was erratic, time to get checked out. After her EKG the doc sent us to Sutter Memorial's ER. The Cardiologist came in as well as the E.P.. They had tried 2 doses of Solatol and then decided something else had to be done. The arrythmia she was in was Atrial Flutter and then next step was a cardioversion. The E.P., Cardiologist, R.T. and a couple nurses were in the room. Prophathol was administered and the "shock" took place. It worked and within 10 minutes she was back to a beautiful sinus rhythm. Alexia is now back on a Sotalol and they will need to monitor her beacause sometimes this med can cause arrythmia's.
One of the perks of Carl working for SMH was she got a private, luxury room with one on one nursing on 4th floor telemetry. I am sure this is a room that they use for celebrities, athletes etc. I will be heading over there now and will post later when I find out find out the plan.
Sunday, April 20, 2008
I am going to do something I have never done before. Everyone knows I love to hold contests on my Blog but this time I am participating in the Bloggy Giveaways Carnival.
I have a absolute favorite on-line toy store that I shop at for any younger children toys. A Toy Garden has high quality toys run by a SAHM. To enter this contest you must browse through this on-line store and leave a comment about it. Please be creative. I will pick the most creative post and that person will win a lavender baby doll wrapped in a blue silk veil.
Shipping is free, but I will not ship anywhere other than within the Continental United States and Hawaii.
Requirements & details:no blog required but you must leave an email address so I can contact you if you win.
You must leave your comment by 04/25/08
I will pick a winner early morning on the 26th of April
Thursday, April 17, 2008
Alexia is planning her next Teen/Young Adult Support Group and wants to take a treat. She is looking for a tried and true Blondie (brownies) recipe. She would prefer a box mix but will also take something simple from scratch. If she picks your suggestion, she will make you (and mail you, if applicable) a batch.
Thankyou for your help!
Wednesday, April 16, 2008
The sanguine temperament is an extroverted temperament. The child lacks the fiery inner purpose of the choleric and is activated more by what is going on around her. She has difficulty in concentrating on one thing for long and a new event easily distracts her. This restless changeability can be a bane for parents and teachers. A sanguine is often light-footed and rhythmical, but also light-headed and light-hearted. The interest she shows in everything makes her popular and a good social bridge-builder. Parties are great fun for her and she is seldom alone. Her face is expressive and mobile and her eyes easily sparkle. She is more likely to have curly hair than straight. It is hard for her to bear antipathy from a friend or an adult, for she is most herself when she feels loved. In extreme forms, the sanguine can appear superficial and may be unable to concentrate on a game or to amuse herself for long. It is good to encourage the sanguine to stick to a task.
Choleric is an extroverted temperament and the child likes to assert himself. He is usually ready to tackle a job which would make others pause. He is not shy, but looks at you with a steady gaze. He walks with a firm step. His will to be out in front marks him as a leader. He likes to have the main role in a play or to organise others. He can inspire the group to complete a difficult task. It is not unusual to see him red with anger and with eyes flashing. This temperament likes to win but seldom bears a grudge. Opposing the Will of such a child generally gets the parent nowhere. He needs to be appreciated and given things to do which challenge him and use up his excessive energy. He learns best from people who can do things well and whom he can admire. He doesn’t easily learn from his mistakes. If guided well the choleric brings initiative and originality to his play. The temperament is fiery and this show in his paintings, where strong colours, especially red, and strong forms dominate.
Phlegmatic is an introverted temperament. This child doesn’t easily connect with what is going on around her, for her interest is not easily aroused. Eating may be a prime attraction and she may be rounded and clumsy. She is generally easy to bring up, so she may not get the attention she needs. She enjoys comfort and doting parents may over-indulge her. She needs to be stimulated to action or to take interest. She is generally placid and doesn’t anger except when extremely frustrated. She is methodical, keeping her things in order unless she is so spoiled that, for the sake of comfort, she abandons her orderly ways. She can be counted on to do what she sets out to do, although speed is no object. She has a certain stubbornness, making her resistant to new ideas. She adores routine. Her love for food makes her gain weight and parents should impose a sensible diet. She needs to be encouraged to join in with other children and to try new activities. When she has found and interest in others, the phlegmatic is loyal and steadfast.
This child experiences his physical body as somewhat of a burden. Instead of moving with a light skip (sanguine) or a firm step (choleric), he drags his feet. A minor physical injury causes excessive pain and while he likes others to know this, he doesn’t want to be consoled. Cold water is to be avoided for he needs warmth. He usually avoids social life and prefers to play by himself. Remarks easily wound and are long remembered. When surrounded by different goings on, he chooses what interests him and is not diverted by other things. He gives himself up easily to his own-world fantasies, which tend to be rich. This pre-occupation with his own world appears very egocentric and further increases his isolation. But it is an isolation which he appreciates. This inner concentration gives the melancholic a special depth and understanding which parents can appreciate. He also asks profound questions about God or death. Such lonely souls need a great deal of love and understanding, but too much sympathy is unhelpful, for he is to some extent in love with his own suffering. Making him aware of others can often help to take him out of his self-centredness. While he never wants to be the heart and soul of the party, he appreciates a warm social environment.
At a recent Parent Meeting we talked about competitive sports, in children, under 6th grade. Our family does not get involved in them neither does 80% of our school and you can see a difference in the children who do participate in them. I could go on and on but would like you to read the article below which sums it up in a nutshell.
PS: Obviously I have struck a nerve with some. My only hopes on this Blog is to write about my feelings, I realize not everyone is going to agree with me and that is ok (nobody is pressuring anyone to read it, you all come back cause you want to). Yes, Aden played T-ball for 2 weeks 2 years ago and it was just not for us. This is a Blog, not a newspaper.
Sunday, April 13, 2008
Today was a wonderful day! Aden had his friend Jonah over and my girlfriend, Lorraine, invited us to a Rivercats game (baseball). She had a suite and we ate and cheered for a few hours. We had a great time and I just adore her! Below are some photos from today.
Wednesday, April 9, 2008
Today Alexia and I were talking about mine and Carl's upcoming B-days, May 10th (Carl's)and May 12th(mine). I insisted that I will be 44 and she insisted 45, of course, she was right. She has been planning to throw a Birthday Bash for this milestone B-day and I should know not to question her memory.
On another note. Carl and my 9th anniversary is approaching on the 17th of April. He is a amazing man and has taught me so much, so much came out of that scary hospital stay in 1997. We are trying to decide if we should take the Harley to Amador for dinner or stay close to home.
How did you celebrate your last anniversary? Anything unique or dare I ask.......
Friday, April 4, 2008
My favorite surgeon in the world, Dr. Rick Mainwaring recently explained Lexi's defect and repair to me. I "kinda" new but really didn't have a full understanding. Leave it to this man to explain something so perfectly.....
There are many types of DORV, everything from a close cousin to Tetralogy of Fallot, to the version that Alexia has (more complex, obviously) to some types where they are single ventricle patients. If the patient had a Kawashima, then they are almost certainly in the single ventricle category. Many patients with heterotaxy have DORV, and most of the heterotaxy/DORV patients need the single ventricle route of management. Parenthetically, it is our current belief that all patients with a Kawashima should have completion of their Fontan, a recommendation that we would not necessarily have made 10 years ago.
Alexia had a complex form of DORV, but had two well developed ventricles, so could go a two ventricle route. She had what is called an apical-aortic conduit—there is no name attached to this procedure, and it is not done very often anymore.
I am sure that it seems confusing that the name DORV, which sounds like it should be a single entity, turns out to be anything but. It would be analogous to calling something a car—that could turn out to be a Mercedes or a Hugo.
The reason I asked Dr. M this question, was because, I am emailed, almost daily, by families of children with DORV, trying to find out what Alexia had done.
Did I ever tell you how much I love this man??????
Alexia and Aden at the Zoo