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.)
Monday, December 29, 2008
Bulleted Recount
December 24
- Last minute shopping at Best Buy, the package store, and the grocery store on my way home from work. Good think we were "dismissed" at 1pm so that I could get some things done.
- Scott, the kids, and I went to my mother's house for our typical Christmas Eve thing where we spent time with my mother, father, three brothers, sister-in-law, niece, and my uncle and his family. We opened lots of presents.
- Went home and prepared for Santa!!!!!! and went to bed.
December 25
- Opened presents with Scott and the Children. Nathaniel was very excited that Santa ate the cookies that he made and the milk glass was empty. Penny was interested in eating and throwing the wrapping paper and bows. I got a new coffee maker and a copy of Fallout 3 the video game.
- Scott's step-father came over (Scott's mother passed away last summer) as well as Scott's sister with her husband and one of his son's with his girlfriend and her 5 year old daughter. We opened more presents. We also played some Sing Star 2 on the PS3, it was hysterical watching everyone sing better than me. lol!! Nathaniel was excited because he got the one gift that he did not get from Santa, but had hoped to get.
December 26
-Took the day off of work. Good plan!
- Ventured back in to the world for an exchange on a gift from Santa to Best Buy. We also went out to lunch and made it in and out of Target alive.
- Scott and I went out to dinner sans children to his business Holiday party. I really had a good time getting dressed up (and makeup!!) for some nice grown up conversation and superb food at Apricots in Farmington. I was very impressed.
December 27
- We stayed home and relaxed all morning, then we went out to meet some friends for dinner at Buffalo Wild Wings in Windsor. The food was great and the babies were good babies. :)
December 28
- Scott's brother and his family from Virginia came over for a visit. More presents!! It was great to see them and their beautiful children, you will see some photos from this visit I promise! They all seem to be doing well.
- My parents came over for a quick visit to see what Santa brought the boy and to try out my coffee maker.
- One of my bestest friends came over for a late evening (8pm to 11 pm) visit since she was only in town for 2 days. She brought presents as well! I was so happy to spend some time with her.
Sheesh just writing all this really tires me. I hope everyone else enjoyed their Christmas as much as I did. It was wonderful to see so many people that I love.
Thursday, December 25, 2008
Merry Christmas
Monday, December 22, 2008
Happy Birthday Scott!
Penny ate an incredible amount of food for dinner. I had to wonder if my mother fed her today. lol First, I gave her a stage 3 Gerber food jar to hold her over while we waited for dinner to hit the table. If we are home we typically do not give her the baby food, but I grabbed it as we walked out the door. Then Scott's dinner of hibachi fillet and shrimp arrived. Penny literally ate 1/2 of Scott's steak and 3 shrimp. Not to mention her new favorite: the zuchinni sticks. She kept looking for more of them. I also personally fed her about a 1/4 cup of the hibachi rice, but I think Scott fed her some as well. She was signing "eat" so I then gave her some sauteed onions, she enjoyed the sweetness from the carmelization. After all that, she was screaming for more tastes of the green tea ice cream, so she had about 4 or 5 tastes of that. Then when we got home at 7:30 she had a full bottle of milk before I put her down for the night. Scott began to wonder if she has a tapeworm in there. I mean, where could she possibly put all this food? I have never seen anything like this before. Hopefully she won't eat us out of house and home!
And now that this day is almost done, HAPPY BIRTHDAY SCOTT!!!!
Sunday, December 21, 2008
Friday, December 19, 2008
Penelope with her brothers
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?
HAPPY BIRTHDAY!!!
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?
Wednesday, December 17, 2008
It was one year ago today.
And the next time I saw her she looked like this, but with the breathing tube still in. ( I just couldn't take a picture of her with the ventilator.)
3 days later, Scott and I were able to hold her even though she was pretty out of it.
On the fourth day after surgery, she even smiled at me while I gave her a sponge bath. I love my little angel on earth!
And we were so pleased to be able to bring her home on Scott's birthday, Saturday, December 22 so that she could be home with us for Christmas. She had no complications from the surgery and has been doing so well I still look at her with amazement for all that she has been through.
Monday, December 15, 2008
Crisis Averted!
Sunday, December 14, 2008
I love my husband!
Saturday, December 13, 2008
New day, New game
1."Maureen needs a date." Kind of funny since my husband took me out to the movies tonight. Thanks Joey for watching the kiddies.
2."Maureen needs your support… “Maureen, please leave the Big Brother House now..."" scary, I didn't know I was in trouble.
3. "Maureen Needs YOU!" Well, I do.
4. "Maureen Needs to Realize Two Things" What do I need to realize?
5. "Despite not knowing a word of Latvian, Maureen needs this one." Actaully, I know several Latvian words. "Cur er vansutubs?" Pauldias. and Lebrett. I don' t know if the spelling is at all correct, but this is the phoentic spelling of these works. My best friend from my senior year in high school was 100% Latvian and she taught me a few words.
6. "Maureen needs hitting with a lump of wood wrapped in barbed wire" OUCH!!! Am I doing the hitting here or am I getting hit?
7. "Maureen needs to read something written by other than her own personal friends once in a while" Well, I am reading the "Truth about Boys" still.
8. "Maureen needs a loan in the amount of 50000 NGN" I don't know what an NGN is, but sure, I will take it!
9. "Maureen needs you to stop crying." This kind of entirely speaks for itself.
10. "Maureen needs a new pair of shoes." Well, right again! Who doesn't need a new pair of shoes.
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
Update on Dr.'s appt.
weight: 23 lbs 6.5 oz - 40% on the typical chart
height: 33" - 60% on the typical chart
and her head circumfrence is still in the 4th percentile.
But, she now has an ear infection. I knew something was brewing by the way she always was rubbing her ear, but when she was checked last Wednesday, Dr. S said that her ears looked great. I was so happy that she made it to 18 months without one single ear infection. I should have knocked on some wood! So I was wondering how one has an ear infection on day 6 of antibiotics. hmmmm. She is getting changed over to oral ancef (whatever that is called these days) and she will be on that for 7 days. She just can't catch a break. At least she hasn't had a fever since Saturday. Ok, I need to find a forest to knock on now!
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!