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Sunday, January 31, 2010

Thankful Sunday

Well, I am feeling a little peer pressure tonight to do a Thankful Sunday post as my blog friends Stephanie and Kele have done one and I really like the idea. I can't seem to get consistent with it but I guess it is okay even if I only do it once in a while.

I am thankful that Jax has Lacey for a mother. This poor little guy is fighting another big battle and is currently in the PICU. His mom is so brave and knows what he needs and how to do it for him more than anyone I know. Please pray for him to get better soon.

I am thankful for the wonderful Sanchez family who has decided to adopt Sophia from the Ukraine. As some of you may remember, she was one of the two little girls that I had fallen in love with from Reece's Rainbow and even sponsored on the Christmas Angel Project. I am so excited to be able to follow along on their journey and can't wait until they can get her home.

I am thankful that my daughter, Abbey, and her friends decided they wanted to do something to help their school. They had a bake sale at one of the local golf courses one day and made $100 which they donated to the school to use to buy some new recess equipment. Our school honors kids who do something for the community by putting their handprints on the "Lasting Impressions" wall.

I am thankful for my blogging friends. Most of them are so much better at putting their feelings about having a child with Down syndrome into words than I am. I get inspired every time I read someone's story, even a small one, about something they have gone through or experienced (both good and bad). Even the one's who are currently going or have been through chemo because their child was one of the kiddos who were unlucky enough to get leukemia. I know full well that this is a journey that I could be on anytime and it helps to know what to expect and not feel like you are going in blindly.
I am thankful that my poor husband made it home safely tonight. He has just started working day shift again which means getting up at 3:45am and had a hard time getting to sleep early last night because he was used to staying up late. As he made the 70 mile trek home tonight (yes, he drives 70 miles each way to work) he said that he had a VERY hard time staying awake which scares me!! Hopefully he will adjust soon. We are seriously considering moving closer as that drive is just ridiculous for him. We just hate to move the kids AGAIN!!

I am sure there are many more things to be thankful for but I probably should go tend to my family ......which of course I am thankful for :)

***does anyone know why sometimes blogger won't separate the paragraphs once I hit post even though they are separated when I am typing them. Also, why can't I move my pictures around????

Friday, January 29, 2010

Ella Walking and Talking

I haven't had much of anything to post lately so sorry for the hiatus. We have just kind of been going through the days without many pictures etc. Ella just decided the other day to start pushing her walking toy...Yay!! She is also saying "baby" although she says it like kids usually say bottle....ba-ba. But it is very definitely her word for baby. I tried to capture it on video but I am telling you, the kid does not stop moving!!!

Wednesday, January 20, 2010

Wordless Wednesday

****This is one of my favorite pictures of Emma and Ella but it never got posted because this was from before I had a blog****

Monday, January 18, 2010

A Cutie That Is Moody

Hi this is Abbey, Ella's oldest sister. I just wanted to show you some pics I took of Ella this Evening! She's a cutie thats M-O-O-D-Y!!!!!!!!!



Wednesday, January 13, 2010

An Up and Down Day

It was a mostly up day though. Today we went to CHOC for our monthly blood check. In my heart I felt that Ella seemed healthier than ever...no brusing, face full of color, and TONS of energy. So I really thought her blood work would be good. But then of course that feeling of getting blindsided comes around and I started thinking "what if the doctor shocks me when he walks in". So when the Dr. came in the room, I said "Well????" And he pulls out the blood work and we see 147,000 next to platelets and he said "Do you like what you see?" I couldn't believe they had come up so high. Ella got a high five for that. Then I say "What about the hemoglobin?" And we look and it is up to 12.0...Woo Hoo...perfectly normal. Another high five for Ella. I could tell that the doctor was pleasantly surprised. He just kind of shook his head at how all of her numbers have recovered. Then he said that he couldn't believe how close we were to starting chemo not that long ago. I know this is just one month and things can vary again next month. But the thing is that we are so happy because we really thought her bone marrow was starting to act up and possibly start trending towards leukemia and its obviously working just fine right now. These little kids with Ds just keep the doctors on their toes with their uniqueness, I guess.
Now for the down part of the day. Last night we went to Denny's for dinner as it is Kids eat free on Tuesdays. It wasn't very crowded so I asked the guy that sat us to give us a bigger table so that Little Miss Grabby Hands wouldn't be too close to our food. Then, when our server came around, I warned her about Ella and her quick hands as well. In fact, when she brought our meals out, Joe and I were still eating our salads so we asked her to put our dinner plates on the table next to us for a few minutes. I asked for extra gravy and when the server brought it out, it slipped and spilled all over my plate of food which, thankfully was still on the table next to us. We laughed it off and she went to get me a new plate of food. By the time she brought it out, I was finished with my salad so she put it in front of me and said, I will be right back with your gravy. She walks up with the HOT gravy, sets it down practically right in front of Ella and says "I didn't spill it this time" and before I could move, Ella reaches right for it and dunks her fingers in the gravy. Of course she starts screaming etc. etc. We put a cold rag on it and it didn't seem to cause any damage but it definitely hurt because she cried crocodile tears for a while. The server felt so bad that she didn't come back to our table again. The manager took care of us after that. So instead of Kids Eat Free....it became the Whole Family Eats Free. Thanks Ella!! She is fine and there were no blisters but I just couldn't believe that the server set that down right in front of her....especially after my warnings.

Thursday, January 7, 2010

The Great Escape Artist

Here is an example of terrible parenting!!! Yesterday afternoon, my husband and I were sitting on the couch talking, Abbey was doing homework at the kitchen table and Emma and my nephew were in an out of the house with the neighbor girl. Ella was just doing her thing roaming around the house. Then the doorbell rings…..it is one of the neighbor kids telling us that Ella is sitting on the driveway!!!! Uh…oh!!! We go out there and sure enough there she is. You see, we have a screen door on our front door but it isn’t an automatic spring closed kind and since it was such a beautiful day out, (sorry for those of you in the rest of the country that are freezing right now) we had the front door open and were just using the screen door. Well, apparently when one of the kids went out, the screen didn’t get closed all the way. So during Ella’s adventures around the house, she must have noticed the escape route and went for it. We did find evidence. A baggie of little toys that she had been dragging around with her was found at the door …left behind for much bigger adventures. Of course, we were impressed by her willingness to adventure out but then I started getting caught up in the “what ifs”….scary!!! Thankfully she had her guardian Angel with her!!!

Also, I got a video of her cruising along the couch. I can’t believe how she all of a sudden figured it out!!!

**note...obviously I didn't get these pictures the first time she escaped. I had to do a re-enactment and of course leaving the door ajar...she went right for it!!

There she goes

She"s gone..around the corner to the driveway!!

Wednesday, January 6, 2010

Rocking and Cruising

I am slowly trying to get back in to a routine as I am sure everyone else is as well. I have been a terrible blogger to start off the New Year but it has been kind of nice to just slow everything down for a bit.
So Ella is really doing well with pulling up on everything in sight. As you can see from the photos above, she has figured out that she can pull up to the Rockband Wii and she was having a lot of fun copying what her sisters do. She has also realized that she can pull up to the kitchen table and reach her hands up to the top of the table. The other night, she managed to pull a plate of food onto the floor. She caught us off guard!!
But yesterday she made big strides in that she actually started cruising along the couch and coffee table. Once she figured it out, she really took off.
On the medical front, her blood levels are still holding as of 2 weeks ago. We will go see her oncologist next week so will do another blood draw then. The good news is that the two small holes in her heart appear to have closed. We did an echocardiogram last week and the cardiologist said everything looked good and we don't have to come back to see him anymore. At least we can cross one specialist off the list. We also had her first OT visit yesterday to work on getting her to eat solid foods. Ella had so much fun there and really didn't want to leave. Right now the OT just wants to get her used to her and touching her face and then we will start trying to introduce some food in the next few weeks.
I hope everyone is having a great start to the New Year.

Friday, January 1, 2010