I have continued to do "music time" with Elisabeth during her hospital stay. Although I don't have my piano or violin, I do have my Zune (similar to an ipod). We have a little speaker set that we brought from home and it has provided music for Elisabeth around the clock. I think it makes it seem a little more like home and a little less like a hospital.
Elisabeth's doctor decided that instead of having nurses come to our home when Elisabeth is discharged they would teach me to administer the injections. This morning was my first go at it and.....drum roll..... I DID IT!!! For those that don't know me well this is a huge deal. I have a phobia of needles and have been known to pass out when getting blood drawn.
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 :)
A few good things about staying in the hospital with Elisabeth:
Elisabeth was admitted to Sacred Heart Childrens Hospital today. An EEG done earlier confirmed that she is suffering from Infantile Spasms. She will be undergoing ACTH therapy to (hopefully) resolve this problem. Her first treatment was just given to her a few minutes ago. We'll see how she reacts.....the side effects are supposed to be pretty severe.
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.
For the past few weeks Elisabeth has been having multiple seizures a day. We almost doubled her dose of medication and still nothing changed. Today I took her back in to the pediatrician who then got in touch with her neurologist.
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:
For the past 12 days we have been on VACATION! Remember this post a few weeks ago? Well, the big day I had planned included the first leg of a 2 day drive to Southern California.
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:
We swam:
My girls played with their cousins:
We enjoyed a lovely day at the zoo (after getting escorted out initially due to an escaped animal):
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!:
It's always nice to take a vacation. But it's also nice to get back to regular routines. I'm looking forward to a quiet week of normal!
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!
The soft roar of the ocean, the warmth of the sun on my skin, the view of sailboats on the horizon. Time seems to move slower at the beach and life seems simple and peaceful. Some of my favorite memories.....from my childhood to the present.....are ones that I've made at the beach.
Grandma's House. Isn't it amazing! I have wonderful childhood memories of swimming in this pool and it brings me joy to think that my children will have those same memories. My grandmother (98 next month) still lives in this Burbank CA home....just blocks away from the Disney studios.
I love this picture of Alexandra at my brother's graduation 2 years ago from UCLA. It will be the perfect picture to plaster all over the place someday when she herself is graduating. Sniff sniff.....I don't want to think about that yet....we're just now getting ready to start Kindergarten :)
My grandfather (right), one of the designers of the Pirates of the Caribbean ride at Disneyland, on site during construction.
Suddenly, my calendar is booked. I have been working way more at Hallmark, and I have had lots of rehearsals. Not intentionally, it just happened. For the past month or so it seems that I am gone every week night and I am longing to go back to the way it was. My ideal night includes a family dinner, bathing the children, family prayers, getting the children put to bed, and then spending the rest of the evening relaxing.
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.
Mozart's Requiem
7:00
Central United Protestant Church, Richland
{my ticket}
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.
We ended up taking Elisabeth into the ER tonight after she spent the day vomiting off and on. Vomiting is a symptom of shunt malfunction, and there is a greater chance than not that her shunt will malfunction during the first year. So of course I was nervous. Is this just a normal childhood illness?? Or is this more??
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.
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.
I was tagged by the lovely Marilyn. Here we go:
4 places I go over and over...
4 people who I think will respond...this means I tag you...
4 movies I could watch over and over...
Elisabeth loves music. Playing the piano is one of her favorite activities.
Check back soon for a video of Elisabeth doing something very exciting!
***May I suggest starting with Workin' for the Man! Part 1 and then Workin' for the Man! Part 2: The Fast Food Years. It won't disappoint.
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
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!
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