Saturday, May 31, 2008
Now that I have faced my fear and have given Elisabeth one shot my confidence is up. I think I will be able to to this. Amazing the things you can overcome when it comes to the health and well being of your child :)
Friday, May 30, 2008
A few good things about staying in the hospital with Elisabeth:
- lots of reading time....something I rarely have anymore
- free diapers
- free formula
- we have already met out out of pocket limit for the year....I am not paying a penny for this
- hmmm...that's about it.
Thursday, May 29, 2008
We still felt that this was the best option. If we chose not to go ahead with the therapy it could cause serious developmental problems. Not only would she stop progressing, but chances are that she would backtrack on the milestones that she has already hit. As the doctor put it, each of her milestones has been hard earned and it would be sad to see her lose that. Her neurologist actually showed me the print out of the EEG. After each spasm her brain literally shuts off and there is no activity for 3 seconds. This is not a good things when she has spasms continually for 3 to 5 minutes.
The hospital has been very accommodating. I get to stay with Elisabeth in her room. There is a bed for me as well as a private bathroom and shower. There is also a family room just down the hall with a refrigerator, microwave, and computer (so I can post these updates).
The ACTH therapy will continue for 2 weeks. If she reacts OK to it they will let me take her home in a few days and a nurse will come to our home twice daily to finish her treatments.
It has been concluded that Elisabeth is suffering from Infantile Spasms. Here is a little information about this form of epilepsy:
Infantile spasms constitute a unique and very serious epilepsy syndrome confined to infants. The usual characteristic features of this syndrome are:
- tonic or myoclonic seizures
- hypsarrhythmic EEGs
- mental retardation
Infantile spasms frequently occur in clusters, and the intensity and frequency of the spasms in each cluster may increase to a peak before progressively decreasing. The seizures are very brief, and the casual observer may miss single seizures. The number of seizures per cluster varies considerably. Some clusters have as many as 150 seizures. The number of clusters per day also varies. Some patients have as many as 60 clusters per day.
We will be taking Elisabeth to Spokane for an EEG sometime in the next week. The EEG will confirm the diagnoses. We will then begin treatment to stop the spasms. I hope to get this situation under control soon. I have read on several websites that 1 in 20 babies with infantile spasms die.....and that has me slightly panicked.
Wednesday, May 28, 2008
I said "how in the world did you do that?" To which she replied "with lots of practice." She then went on to tell me that she has been cutting silhouettes for 30 years.
Amazing. My favorite souvenir. Ever.
Monday, May 26, 2008
Unfortunately, my ducklings didn't get well in time and we had lots of vomiting in the car. But we survived. The trip was full of fun. Elisabeth got to meet my side of the family.....many of them for the first time. Here is a peek at our getaway (you may notice that the pictures I shared last week hinted at what we were doing on vacation):
My sister Jennifer graduated from Humboldt State University with a degree in archaeology:
More swimming.....this time at Grandma Coats' house:
And of course we had to pay our respects to Disneyland. It is so fun to share this part of my family history with our children!:
Friday, May 23, 2008
Elisabeth. I need not explain again why the day of her birth is my most cherished memory. If you missed it, you can read about it here.
My dear baby will be 8 months old tomorrow! She has had a rough week. A mild case of the flu and multiple seizures every day. Her neurologist has increased her medication several times in the past month. Hopefully we will get this under control soon.
Well, that wraps up a week of sharing some of my favorite photographs. Stop back by on Monday for some exciting news!
Thursday, May 22, 2008
Wednesday, May 21, 2008
Tuesday, May 20, 2008
Monday, May 19, 2008
This week I am going to share some of my favorite family photographs with you.......starting today:
Thursday, May 15, 2008
Donald tells me that the girls ask every night why Mommy can't put them to bed. It breaks my heart. I never wanted to be the mother that was gone all the time. Granted, they are with me all day long, but I don't wanted to miss out on those precious bedtime rituals. Rituals like checking for monsters under the bed, and reading stories, and tucking in, and hugging , and saying 'I love you's'. I need to make a change, now.
Wednesday, May 14, 2008
Tuesday, May 13, 2008
Monday, May 12, 2008
I must admit.....I was a little disappointed at first that my ticket was for the result show instead of the performances, but it turned out to be anything but disappointing. When we walked into the studio where the stage was we discovered that our seats were in the 2nd row directly behind the judges! We were so close that I could see each of Paula's poorly done hair extensions. My sister was with me and managed a little innocent flirting with Simon as they powdered his nose during commercials.
We were also pleasantly surprised to find out that it was an hour long result show as opposed to the 30 minutes ones that they had been doing that season. And the highlight....Clay Aiken was there to perform! Loved it!
The exact show we were at was the one where Latoya London was eliminated leaving Jasmine Trias, Diana DeGarmo, and of course....Fantasia Barrino. And because it was recorded live, eastern time, we were able to drive to my moms house afterwords in time to watch it air on the pacific coast. We cheered when we saw ourselves in the audience. Such a fun time and a wonderful memory to have! I think that I'll try to make it again next year. Maybe this time for a Tuesday performance show.
Sunday, May 11, 2008
After speaking to her pediatrician by phone several times we decided that we had better play it safe and take her in. A head CT showed that there were no problems with the shunt and that the fluid in her head had decreased some more since her last scan a month ago.
Kennewick General Hospital was wonderful as always. They have never made us wait...as soon as we walk through the door they whisk Elisabeth off and immediately start caring for her. The staff is kind, courteous, and informative. We are big fans of KGH!
The pumped her full of some IV fluids to fight off dehydration and sent us on our way. Needless to say we are relieved that she only has a little stomach flu and are very happy to be home.
Saturday, May 10, 2008
Thursday, May 8, 2008
A Special Child
Wednesday, May 7, 2008
Monday, May 5, 2008
Elisabeth decided that she wanted to roll over....and so she did! She had never made any attempt to move - even from side to side - and then out of the blue she did this! Needless to say we are PROUD of her.
One of my favorite things about this video is how she is constantly feeling the blanket with her hand. She has really learned to explore her surroundings through the sense of touch.
4 places I go over and over...
- Doctors Appts
- Michael (my brother)
- Kristin (my sister)
- Jennifer (my sister)
- Mexican food
- French Dip Sandwich
- Rocky Road Ice Cream
- Monteray Jack Cheese
- The beach
- On a cruise
4 people who I think will respond...this means I tag you...
4 movies I could watch over and over...
- Catch Me If You Can
- Mary Poppins
- The Sound of Music
Sunday, May 4, 2008
Elisabeth loves music. Playing the piano is one of her favorite activities.
Check back soon for a video of Elisabeth doing something very exciting!
Friday, May 2, 2008
There are chances for work all around just now,
Opportunities right in our way.
Do not let them pass by,
saying, “Sometime I’ll try,”
But go and do something today.
’Tis noble of man to work and to give;
Love’s labor has merit alone.
Only he who does something helps others to live.
To God each good work will be known.
It's the perfect dress for the upcoming summer - cool, comfortable, and cheerful. And the bib...complete luxury! She made the backing extra, extra soft so that Elisabeth can enjoy its feel.
Thank you Susan! You put a HUGE smile on our faces :)
***pictures of Elisabeth in this gorgeous dress to follow
Thursday, May 1, 2008
May Day (May 1st) is celebrated in many places around the world. The traditions and stories surrounding May Day vary from place to place. There is, however, one thing that is similar in most celebrations - the use of Flowers!
- One of the most popularly known May Day traditions is to hang a basket full of spring flowers and/or other small gifts on a neighbor's doorknob. The trick is you don't want the neighbor to see you! If you get caught, you are supposed to get a kiss.
- A popular activity on May Day is to decorate a pole with brightly colored ribbon or paper streamers. Some also add flowers and balloons. The pole is usually carried in a parade and then placed in the ground at a designated area. People then dance around the May pole, holding the ends of the streamers or ribbon in their hands.
- In London, May Day is celebrated with the children going from house to house. They bring flowers and get pennies in return. The pennies are then thrown into a wishing well. The pennies are then donated to charity.
- In France, cows play an important role in May Day. The cows are led in parades with many flowers attached to their tails. The people watching the parade try to touch the cows; it is believed to be good luck.
- In Germany, one tradition is for boys to secretly plant a May tree in front of the window of the girl they love.
- On May 1st, people in Hawaii celebrate their own version of May Day; they call it Lei Day. People give Hawaiian leis to each other. They put them around each other's necks and sometimes give a traditional kiss.