Archive - December, 2007

Big Day Tomorrow

December 10, 2007 in Lana's Journal, Tay Sachs with 0 Comments

Tomorrow Carmen will be admitted to Children’s and will have the NG feeding tube placed (nasal tube). We have been told to expect a 2-3 day stay.

Carmen has been sick this week and not slept much. Last night she went to bed at 8:30pm and woke at 10pm. I rocked her for an hour and then my father-in-law (here to help us for the week and especially while Dave is in Chicago for a couple of days for business) rocked her from 11pm to 2:30am. I then took over until 4:15am when Carmen finally fell asleep for a couple of hours. She was coughing and crying and a mess most of the night. I took her to the doctor this morning and her lungs are clear. I gave her some Benadryl tonight to help dry up her nose and help her sleep so hopefully tonight will be better.

Hopefully we will all get some rest soon!

On a good note, Carmen gave me some nice smiles today. I am so glad we have great pictures of Carmen smiling. She has a beautiful smile.

Thanks to my friend Karen for the AMAZING castle cake for Lauren’s birthday and for all of you who made her day special! She wanted to stay home from pre-school and play with her new toys! (I didn’t let her!) I think she has the Pinkie Pie Pony book mostly memorized.

And a big thank you to another Hospice Angel, Monica, who played with Lauren for FOUR hours last Thursday so that I could get some stuff done around the house!

Happy 4th Birthday Lauren!

December 5, 2007 in Lana's Journal with 0 Comments

Lauren woke to a wonderful birthday surprise. Snow! It snowed all day and Lauren had a blast making snow angels, snowballs, and eating lots of snow! Carmen also got to experience the snow on her face when I picked Lauren up from preschool.

I really cannot believe it has been 4 years since Lauren was born. She is such a little lady. She makes me laugh every single day. She is so sensitive and concerned about others. I love that she thinks Carmen is perfectly wonderful, just the way she is. If only we were all so accepting of others.

We gave Lauren a Princess bike for her birthday. She has been asking for a pink and purple sparkly bike and this one is just perfect. Granddad and Nancy sent a doll named Lauren and Texas Grandma sent a Veggie Tales movie, The Wonderful Wizard of Has. Grandma and Grandpa C. gave her pink sparkly pants and a Princess bike helmet and pads. Carmen gave her a new teddy bear. Oh to be four again and get such fun presents!

Lauren asked for pancakes for her birthday dinner so we had pancakes, eggs and oranges.

It truly was a great day!

Scottish Angel

December 2, 2007 in Lana's Journal, Tay Sachs with 0 Comments

A Scottish angel named Eileen landed in our house yesterday! Eileen volunteers for Hospice and she came to watch Carmen so I could take Lauren to lunch. I never know how people will react to Carmen. A special few are perfectly at ease with Carmen and Eileen definitely is one of these! She had a whole conversation with Carmen and even made Carmen giggle a bit. Lauren and I went to the mall to Chick-Fil-A for lunch and then to Stride Rite for new shoes. Every little girl needs a pair of pink/purple/blue/orange shoes! :) Thank you so much Eileen!

A big thank you to my friend Kerri for the two huge boxes of girl clothes!

For the past few days Carmen has smiled and laughed more than she has in months. I love her smiles!

Just a little Sunday update

December 2, 2007 in Lana's Journal with 0 Comments

This past week was CRAZY!!! Dave was in San Diego for business and I had the girls by myself. We had a packed full schedule. Monday I had my first session with a counselor. I decided that in order to get thru Carmen’s illness, I need someone to talk to consistently. Also on Monday, a medical equipment distributor came over to measure Carmen for a Kid Kart adapted stroller. This stroller has a separate seat to use in our house. I am anxious to have a good seat for Carmen to get her off her back more. Tuesday we met with a Hospice coordinator. This group is not a traditional medical Hospice but a volunteer group to assist in errands, watching Lauren so I can take Carmen to the doctor, watching Carmen so I can give Lauren some much needed “mommy-time”, etc. I am absolutely relieved to find these wonderful people! I am nervous about leaving my girls but I think they will be in good hands. My friend Karen brought over dinner- Thanks Karen! Thursday Carmen had a gastroenterologist appointment and her doctor is concerned about aspiration. We are waiting to hear back from her doctor.

We may admit Carmen this coming week or next for a few days. Carmen is still eating well, three 8-oz bottles of formula and three jars of baby food each day. We gave up on spoon feeding last week and now feed Carmen baby food in a Sassy Infa-feeder bottle. Carmen gained over a pound in a month so she is clearly getting enough calories. I think the problem is aspiration- she often coughs after eating and sounds congested much of the time. Friday Carmen had a physical therapy session and we worked on positioning. She is favoring her right side and rarely turns her head to the left.

Hopefully this week will be less crazy than last!

Page 2 of 2«12