Thursday, January 31, 2008

Super Baby




These may be better; does it look like Penny is trying to fly away? Believe it or not, but Nathaniel took the picture above and to the right. I think he did a great job! Look at Penny trying so hard to be like her big brother.

Penny is Gaining Some Muscle

Penny is really raising her whole body. Her PT is so impressed with her strength and ability!! I was so happy to see her raise herself this high. She was so proud of her self too I think.
She just loves to look at Daddy and smile. She is such a ham. We told her she needs to do at least 20 push ups everday so she can get big and strong like the rest of the family.
OK, now she is smiling for Mommy! I love her enormous smile. Can she open up her mouth any wider?? She must be thrilled about something I am doing.
I couldn't get a great shot of this, but she lifts her arms and her legs at the same time. Something her PT is very impressed with as this indicates strong abdominal muscles. Scott and I think it looks funny because it looks like she is going to fly away. :)

Monday, January 28, 2008

It Finally Came!!!


Today I got home from work and I felt a tooth in Penny's mouth. Yay!!!!! All her hard work teething is paying off. One tooth down and a bunch more to go. I can tell she is really happy with herself. Right. . . . She is still just such a happy baby for the most part. I love to laugh with her and sing to her. She responds so nicely to me.
Also, I want to wish a happy belated birthday to a special baby Zoe. Her mom found me through Little Hearts, org. Zoe also has Tof and T21. Welcome to the world little one!!!

Saturday, January 26, 2008

TAX BREAK

Tax break for parents of special needs children.

PLEASE READ THIS PETITION AND CONSIDER SIGNING. As the beginning of the petition states, "parents of healthy children get tax breaks for college tuition, yet no one is required to attend. The parents of special needs children, who may or may not ever be able to attend college, do not get tax breaks at all. . ."

Penny's first movie

video

Ok, so Scott and I figured this video thing out? I know this is kind of boring, but she is so darn cute. I hope you enjoy.

Friday, January 25, 2008

where I want to be right now



I am so tired right now. Penny and I did not sleep much last night. Nathaniel slept in my bed too, but he made sure to remind me that he was there by screaming every so often and hitting me in the face with his flailing arms. sigh. . . I liked it when he woke up at 6:30 and proclaimed, "Mommy, I slept really well last night." Yes, I was proud that he says "well" correctly, but I was more bitter that someone besides me got any sleep. I wish I was at Lake Tahoe relaxing in a boat. Thanks dad for sending me this picture. It has been a big help lately.

Sunday, January 20, 2008

"P"

Penny had a good weekend, I think. . .what is her recourse anyway, "Mommy, I'm bored, let's go hit the bar." I don't think she will be saying that to me anytime soon. :) She slept until 5 am both Sat. morning and this morning. I said it before, but I will say it again, "I AM SO HAPPY SHE IS BACK TO SLEEPING THROUGH THE NIGHT!" We still haven't sat down with the speech therapist. We had expected to start with ST last month, but the therapist had a cold at the beginning of the month so we canceled, and then she had surgery. . . you know. But we really need to call her and get her in before the end of the month. I started to use some sign language with her this weekend. I showed her "mother," "father", and I took the letter for "P" and then pointed to her as well as doing that with the letter for "N" and pointed at Nathaniel. I had asked Nathaniel Friday night if he had any thoughts on a visual representation of his name. He did not so I said you can be "N" and then a point in his direction. It made him happy. We have physical therapy coming on Tuedsay. We love love love her. She is just so supportive in all that we do and that is sometimes really good for Scott and me to hear.

Friday, January 18, 2008

She's back to her Old Self

We are on a roll here with Penny sleeping through the night. For a few nights now Penny goes down between 8 and 9 and sleeps until 5 am. Of course, we would like her to sleep until at least 10 am, but I guess I need to be happy for what I have. :) She is such a sweetie while she sleeps. I want to kiss her and love her forever. I can't believe she is almost 8 months old. I haven't even gotten used to the idea that I have a daughter yet. If anyone has the time, I highly recommend getting over to jibjab and making a little video of yourself in the starring you section. I laughed my butt off.

Wednesday, January 16, 2008

Almost wordless Wednesday



I notice that a lot of bloggers I keep up with their "Wordless Wednesday." I would like to jump on that band wagon with this picture I have always loved of Nathaniel at our wedding. In the background is my cousin's daughter, Nadia. Nathaniel was about 2 1/2 here. :)

Tuesday, January 15, 2008

Christmas Photos




Let me just get the christmas photos out of the way and then I promise going forward there will be new pictures. Of course the wrapping paper was much more interesting for Penny then the actual presents. She got 2 things from Santa. Nathaniel was pretty proud of his bounty.

Big Brother

Nathaniel is very nurturing, not sure where he picked that up though. Maybe from Scott? Penelope has been around for 7 months now and Nathaniel is very adamant that he will be marrying Penny when he grows up. Really, he mentions this once a week. Sometimes when he is mad at us he says things like, "Well, we will just have to get rid of you." So today I told Nathaniel that I was going to get rid of him and get a new son. After he laughed at me for saying this, he returned with, "If I'm going, I am bringing Penny with me." What a kid. Before Penny came along, he wanted to marry me. He actually told me when he was 3 that he is "mad at Daddy because I wanted to marry you." This was after he gazed at a wedding photo Scott and I have around the house. If that is not Oedipal than I don'd know what is. I explain to him each time that when he grows up he will probably change his mind, but apparently I am wrong. I will need to get used to that, always being wrong. I know that my mother was never right when I was growing up. Now, Nathaniel thinks that Grandma is always right and I am always wrong. That's ok, I had my chance at being right all the time when I was five.

Monday, January 14, 2008

To those who know Katie

Tricia had a good point in her last comment. There are a lot of little friends of Penny who know Katie well, maybe too well ("No, don't take anymore chest tubes out of me!!! Get back, get back and go away!") Well, to Georgia, and Dillon, and Addison, and every one else who is as curious and nosey as me, Katie from Dr. Mello's office was due to have a baby on Christmas eve. It was really pretty inspiring; Penny's surgery was 7 days before Christmas eve and Katie was on her feet for well over 10 hours watching over Penny and discussing her condition with us. Katie even did rounds each day we were in the hospital as a matter of fact. Well, I think it was Dec. 27 (our follow up was the Thurs. after Christmas I am sure), we learned that Katie had her baby, a healthy baby girl they named Samantha. Welcome to the world little one!

She slept thru the night!

Let's hope this is a trend. Penny went to bed last night around 8pm and slept until 4:30 am at which point she woke up to be fed. Then she went back to sleep after I fed her and she was still asleep at 6:15 am when I left to go to work. Yay!

Sunday, January 13, 2008

I finally got to hold her after 4 days




Hospital Pictures


Daddy finally got to hold her too. I think he was happier then Penny was, what do you think?

All these above photos were after the chest tubes were removed on Friday. She was a much happier baby with those things gone. She still needed the air pushed through the nasal canula, but it was pretty close to room air. The last photo was after a sponge bath; I can't believe jsut 4 days after her surgery. She had just been laughing at me!

Photos from Penny's hospital stay


These two photos were taken Tuesday night. She had the breathing tube taken out earlier that day, but she still had all three chest tubes in. I didn't have the strength to capture her on film with the breathing tube in her. However, she is pretty high on morphine in these shots.


She looks so darn cute in these johnnies that are 2 sizes so big. And looking back on film this other picture does make her look a little bluish. Maybe it was a coincidence?


This is us right before going into triage. I couldn't believe Penny had to go through this again!
A photo diary of Penny's recent stay at the hospital for her surgery: The last 3 are from before surgery. ! :)

Something the Lord Made

Ok, so my grandmother sent me a DVD to watch of a movie made in 2004 about Dr. Blalock, who was the pioneer in the field of heart surgery. His motivation for attempting such a daring feat, was the condition tetralogy of Fallot. Something the Lord Made was a wonderful film and I recommend it to anyone who is interested in the history of medicine, black rights, or drama flicks. The movie was as much a portrayal of Vivien Thomas the black surgical technician that embarked on this journey with Dr. Blalock.

When will she sleep through the night?

I know she just had surgery, but I really want her to sleep through the night like she used to. Maybe the increased oxygenation in her blood is giving her increased energy and she is saying, "What??!? what is this sleeping business everyone wants me to partake in?" She is up almost every other hour. I don't know how much more of this I can take. I am sure my sister -in -law is thinking that I should be glad for the 7 months of pretty much uninterrupted sleep that I have had the good fortune to enjoy. My niece, Hailey will be a 1 year old next week. She has been walking for at least 6 weeks now, and by now she is a pro. But she does not sleep through the night either. I already forgot if Nathaniel slept through the night or not. Right now Penny is playing on the floor and she is making some pretty strange noises. Nathaniel loves to play with her, and he is helping her pick out some toys. :)

Saturday, January 12, 2008

Welcome me!!!

I want so much to have time to myself at the end of everyday, and what do I want to do with this time, but share my day with the rest of the world! I hope I am welcomed into the world of bloggers. There are a couple of women who have inspired me to this point. Mostly, it was the birth of my daughter Penelope in May of 2007 that brought me here. We found out when she was born that Penny has Down syndrome. A couple of hours after birth, we then found out that Penny had a serious, but repairable congenital heart defect, Tetrology of Fallot. To immerse myself in information, I found other mothers of children with Down syndrome in the Blogger world. When I figure this out, I will post links to their blogs as well. Thank you all for coming.