A blog about my daughter growing up and facing the joys and challenges of growing up with Down syndrome and Tetralogy of Fallot while enjoying the love of a rough older brother. (Look how purple her feet were before her heart repair.)
Wednesday, July 1, 2009
How stressful is your morning?
I love and hate it when the babies don't wake up. They slow me down considerably because I would have to change Penny's diaper and make sure she has enough entertainment in the crib to last her until Scottie gets up. It also makes my day when I get to rub my face on her babyish cheeks and kiss her all over. Nathaniel usually tells me first thing that he loves me if he spies me before making it to my car.
My car ride to work is usually only 20 minutes. I really don't think I could handle more of a commute then that.
I would like to get back into doing yoga in the morning. I feel so much better even after 3 or 4 days of yoga.
All in all I would have to say that my mornings are not very stressful?
How is your morning?
Friday, December 19, 2008
The Santa Visit.
This was the only half-way decent photo Scott got of the Children with Santa. I think I should have been in charge. hmmm. Anyway, the children had lots of fun and that is the point right?
Thursday, December 18, 2008
Has anyone else had this problem?
My beaver. . . I mean baby, likes to chew into the wood of her crib. The straight sides have a plastic guard over it; however the curved head and end sides are exposed. When she is quiet in her room (or perhaps when light from the full moon pours through her bedroom window, transforming her into a beaver-by) she must be staning at the end of her crib and lick the crib until she finds a spot that she likes to bite into. OVER AND OVER AND OVER AND OVER AND OVER again. I first noticed small bite marks about 3 or 4 months but I didn't put much thought into this because I thought she would grow out of this quickly. I mean, how is this appealing. But I noticed yesterday that the biting has not stopped and it is clear that she is licking the varnish off the rest of the edge. Can anyone suggest something here. I can't think of something that would be flexible to cover the edge the right way, but not be bite-able. Can you?
Monday, December 15, 2008
Crisis Averted!
Friday, December 12, 2008
I am so pissed!!!
It was only 5:15 pm so I called the insurance company and learned that our cariologist became out of network on Oct. 18. ONLY 2 WEEKS PRIOR TO OUR DATE OF SERVICE. Can you believe that no one told us that they were out of network. I mean come on, how are we to know? I asked the insurance rep that same question and she told me that I could always check online before every doctor's visit. It is nothing short of a miracle when we make it there on time, who has time to check online every time for doctors to be coming on and off network. Besides which, I passed my insurance card to the receptionist when I paid my co-pay, and she could have told us then. I made the appointment in September when there were still in network. I am just really frustrated about this. I even asked the representative for the other pedi cardiologists in the area to see if I could get on the gap exception angle, but there is a dr. in Vernon.
Because Dr. S is now out of network, we got hit with a $300 out of network ded, and then 30% for the co-insurance. Argh!!!
I plan on calling next week to argue the bill, but I think I am more upset that I have to change physicians on Penny. Dr. S has seen Penny since she was 1 day old. Plus we have to do that MRI next year. Any advise would be welcome on this subject.
Thursday, December 11, 2008
Santa Claus is Coming to Town and other ramblings
We are going here on Saturday. I can't wait!
Oh, you should pop on by to Jessica's blog, she has a couple of wonderful stories for you.
Lastly, we had Nathaniel's conference today. It was not anywhere as bad as I was expecting. She did not imply at all that my son needs to be hung out by his toes. Even when he has recess taken away from him (which is everyday) she lets him run around for a few minutes to burn some energy. It sounds like his music teacher can't stand him, but she doesn't count, she only sees him once a week. We just need to work on our listening skills. . . .sigh, easier said then done, right?
Wednesday, December 10, 2008

This was taken in July of 2005, the summer that Nathaniel turned 3 (and I turned 26, heheheh)
My father's family is in CA for the most part and I miss them so much, especially my Nana. I hope I can see you all soon! All these girls are Nathaniel's 2nd cousins, and even though it was pre-Penny, I think back to what a wonderful time we had on that vacation seeing all the people that I love. Thank you all for a great time.
Tuesday, December 9, 2008
"All Done"
It is a good thing my son Nathaniel loves me so much that he tells me how bad he feels that I have been in horrifying pain for the past 24 hours. ( I threw my back out yesterday.)
I think I need to go to bed early today and put the heating pad on because I can't wait for this day to be over!
Monday, December 8, 2008
Has anyone read this?

Sunday, December 7, 2008
Question
We just put ours up today. Penelope was fascinated by the tree when she woke up from her nap and realized it was there. Nathaniel was such a good boy helping us with all the decorations. He kept saying, "I love putting the uniforms up." "When can we put the uniforms up on the tree?" Intead of using the word ornaments. It is so funny when they are that age and they use the wrong words. lol.
I will have to get some pictures up soon.
Click here for pictures of last Christmas. Keep in mind that Penny had open heart surger 8 days previously on Dec. 17 to repair her Tetrology of Fallot defect.
Saturday, December 6, 2008
Another Down syndrome story
My mom thinks that's silly. "Have you ever met anyone who didn't like you because you have Down syndrome?" she asks me. She's right, of course. (She usually is!)"
Read the rest of this story written by Melissa, a teenager with Down syndrome HERE.
Friday, December 5, 2008
What Movie Is Your Christmas Most Like?
Your Christmas is Most Like: A Charlie Brown Christmas |
![]() Each year, you really get into the spirit of Christmas. Which is much more important to you than nifty presents. |
Click on the link to discover what Movie your Chritmas is like. Oh, and Renee thanks for this post and my favorite Christmas movie is The Nightmare Before Christmas.
Thursday, December 4, 2008
What type of blogger are you?
The entertaining and friendly type. They are especially attuned to pleasure and beauty and like to fill their surroundings with soft fabrics, bright colors and sweet smells. They live in the present moment and don´t like to plan ahead - they are always in risk of exhausting themselves. The enjoy work that makes them able to help other people in a concrete and visible way. They tend to avoid conflicts and rarely initiate confrontation - qualities that can make it hard for them in management positions.
I AM A SENSOR/FEELER? WHAT?!?!?!?!
Click on the title of this post to get your blog analyzed.
Wednesday, December 3, 2008
More to report
Now I want to leave you all with something I found really inspirational. Especially since I am new in Cub Scouting myself. Please take the time to watch this video. You will be glad you did.
Tuesday, December 2, 2008
Day 2
Monday, December 1, 2008
Day 1
This story will be aired on the Discovery Channel's Mystery Diagnosis in February of 2009. This litle girl ended up being diagnosed with translocated mosaic Down syndrome. Penny's boyfriend, Dillon, has mosiac Down syndrome. However, she was not diagnosed until almost age 3 due to her very mild symptoms. You can read all about her and see pictures here. This post is very imformative about the different types of Down syndrome.
"Hannah was born April 11, 2000 weighing in at 9 lb and 20 1/2 inches long. She developed and hit all milestones at a typical level. She did have projectile vomiting along with constipation issues however these were addressed as allergies and add more fiber or water less iron less lactose etc….. she started getting ill with every virus cold flu and cough around December ‘02′/ January ‘03′ and I noticed a Cobalt Blue color bruise on her right shin, when I questioned that I was told wait a month and watch it… when I questioned her illnesses–well it could be this or that…. while she was ill she complained of severe leg pains and cried to walk or play stumbling at times, she was pale and so on…
March 27, 2003 she was diagnosed with Leukemia a rare form (Myelodysplastic Syndrome) and admitted to Children’s Hospital of Pittsburgh. During her initial high dosed chemotherapy it was discovered she had a chromosome translocation ( small parts of her #1 and #19 switched places) as well as trisomy 21 with monosomy 7. At the time we had no clue she had these abnormalities or extra cells. Further testing showed she had a mosaic Down syndrome, this was effecting about 5-10% of her cells, she was never diagnosed before or after her birth with any of these until her leukemia diagnosis in 2003."
Again, please click here to read the rest of Hannah's amazing story. And she is so cute!