Getting ready for the holidays and cleaning house

I am trying to take advantage of Emily being home from the hospital to get our house cleaned up. It is absolutely embarassing what it looks like right now. We had some friends over last weekend (hi Lacey!) and I realized after they left how horrible my house looks right now. It seems like we are never home long enough to complete a project. Mainly what I do is just organize the crap wherever it is, and try to keep the house functioning. What I am going to start this week is really CLEANING. Not just putting things in neater piles, but finding a home or organizing system for the things. Taking more stuff to Goodwill. Giving more things away. Selling some things we don't need anymore, to make a little extra holiday money.

While doing that, I am soaking up Emily. She is doing pretty good this week! KNOCK ON WOOD she has done well since we came home from the hospital this last stay. She is still on TPN 100%, gets medications in her j-tube, and her g-tube drains to gravity 24 hours. It's actually a gj-tube, although we are discussing with the GI putting in a seperate j-tube sometime in the near future. She relies on a LOT of medications to get through the day happily and without retching and crying all day, but it is what it is. When she is happy and smiles at you and wants to cuddle, it makes every rough moment disappear.

Jacob is doing great as well. We get his grades via email each week, and I can always keep tabs on him. His lowest grade right now is a B+. That makes my mommy heart so happy. He is such a well adjusted, smart, amazing little man. He still takes tennis lessons twice a week and is getting really good at it. It's like watching a real tennis game when they play!

We had a wonderful Thanksgiving at my parents house. The food was all delicious, and I am eating leftover Oreo cheesecake as I type this. Yum! It was great to be out of the hospital and surrounded by family and love. We took the kids to Legoland yesterday, and it was so much fun. Emily was able to go on almost every single ride, including the roller coasters! It was a great family day. Hopefully we will continue to be HOME and celebrate the rest of the holiday season here. We pulled down all the Christmas boxes this evening, and will start decorating tomorrow. I love Christmas decorations!

I hope everyone is doing good. I am behind on reading blogs and commenting and catching up. Hopefully I will have time to do that this week, in between laundry/cleaning/Emily. :)

Thankful for Thanksgiving

We are home now, and so thankful to be here! The good days more than make up for the not-so-good days. Emily is sleeping a lot lately, but when she's awake she's happy. She is always in and out and in and out of the hospital, so we love the out times. This weekend we got to spend a day at Disneyland with a bunch of friends. Emily did great! She loves going on rides, especially Small World. The girl is so happy being pushed around for hours in her wheelchair. :) We are getting ready for Thanksgiving. Cooking, cleaning, doing laundry in my brand new washing machine. It's the little things in life that make me happy sometimes. Thanks for checking in on my Princess. Things are about the same, but at least we're home. Happy for home!

The Tostinos/redbox winner is ...

The Enriquez Family!! Sorry I don't have a picture of Jacob drawing the name from a pink hospital wash bin but my camera is missing. :( Anyway, congratulations to the Enriquez Family! Please email your mailing address to me at waffle1313 @ gmail. com. :)

Totino's Pizza Rolls and Redbox Giveaway

You all know how often our family is home together and has time to relax. Just about never. So when we are all home and no one is at the hospital and everyone is feeling good, the last thing I want to worry about is making dinner! Thankfully there are many options for frozen dinners and treats that are easy and delicious. Right now there is a great deal going on! Look for specially-marked packages of Totino’s Pizza Rolls and Party Pizzas to stock up on everything you need for a Fun Friday Night: purchase 4 Totino’s Party Pizzas or 2 Totino’s 40 count Pizza Rolls to receive a free one-day redbox DVD promo code. With more than 27,800 locations, and available nationally at Walmart, there’s always a redbox kiosk nearby! Find the closest redbox kiosk by checking redbox.com/locations. If you haven't tried redbox for movies yet, you have got to! There is a huge variety of movies from all categories, even Blu-Ray and video games. We always find something we want to watch. There is no easier way to rent movies - you can return the movie at any redbox, it doesn't have to be the same one you got it from! By us there are redbox kiosks everywhere - Walmart, Walgreens, Stater Bros. I was lucky enough to get a special package from MyBlogSpark, thanks to Totino's! I the package was a coupon for Totino's products - and can I tell you that Jacob is now in love with Pizza Rolls? There was also a coupon for a free redbox movie, two cute pizza slice plates, a great new pizza roller, and a popcorn bucket. One of YOU reading this post can receive the same package!

Here's how to enter - simply reply to this post by tomorrow, Friday November 18th, at 5:00pm. In your reply, tell me if you have ever used redbox and how you like it. One winner will be drawn at random by Jacob (the Pizza Roll eating boy). Disclosure: The VIP coupons, prize pack, information, and giveaway have been provided by Totino’s through MyBlogSpark

Admitted again

Emily had an amazing birthday party. So many of our special friends made it and she got some lovely gifts. We are very lucky to have so many great people who love our girl! The next day we went to the Mattel Children's Hospital Party on the Pier, and it was a blast. Wednesday Emily had outpatient surgery to scope her Mitrofanoff and dilate it. They did a ton of bloodwork beforehand, and they called Thursday morning to say that she had a positive blood culture. So in we went to the ER, for repeated cultures. I've been told already that the repeat culture was positive as well. I haven't seen any doctors today, so I don't know the plan. No one has started her on antibtotics yet, so I don't know what the stay will be like. It would be great to go home wit IV antibiotics, but with her history of sepsis with no fever, I doubt they will let us. Please keep Emily in your thoughts and prayers. This is admit 19 I believe, since March of this year. It's a lot for one little girl!

Tomorrow is PARTY day!

Emily turns 8 on Sunday, and her big party is tomorrow. When I say big, I mean big. It started out small, of course ... and then we have a horrendous year with her in the hospital so much. There were a couple of times where we weren't sure if he was going to survive, including just last month. So the party got BIG. I cannot wait, and I will definitely share lots of pictures afterward! It is going to look like a Hello Kitty explosion at the park. :)

We're home again ... And staying here, damnit!

Oh, I guess I didn't even mention that we were admitted again. I have a hard time updating lately, and thinking of something witty to say. Emily had TPN clinic last Wednesday. During the appointment, I caught her TPN tubing on her wheelchair while lifting her to the exam table, and broke her central line. You know, that pesky little life-saving line that goes to an artery directly next to her heart, so that she can receive the IV nutrition that is keeping her alive. We had to wait while the TPN nurses ran to the hospital next door and scrounged up a repair kit. By Friday she was retching more and irritable again, so we were told to take her to the ER for labs and a blood culture. Thankfully everything looked fine, so we got to go home. Saturday we went to a birthday party for a friend, and Emily had a blast. Sunday we went to an awesome Make a Wish party on the Santa Monic Pier, hosted by Kevin James. Every Wish kid was given an iPad 2 by Kevin James! Monday afternoon Emily pulled her gj-tube out. I put a g-tube in, and paged the GI on call. For those who aren't drowning (oops, I meant immersed, did I say drowning?) in the medical world, a g-tube goes into the stomach. A gj-tube goes through the same stoma (hole) and then threads deep down onto the intestines. Emily needs this because she doesnt tolerate anything in her stomach, including the 26 meds she takes daily. We had to go to the hospital, but they couldn't replace it until late Wednesday night. So we were admitted and sat on IV meds and waited. Not all of her meds are available in IV form and she was already in withdrawals from missing doses of methadone and Ativan, so she as a mess. Her tube got replaced Wednesday, but we stayed that night to be sure Emily would return to her new normal before going home. We were discharged Thursday morning, andi was so glad because Jacob's back to school night was that night. I have to admit that I am no longer handling this well. I am a puddle of tears and self pity. I feel like I have lost any semblance of who I am, and my only identity is being Emily's caregiver. I don't have a chance to go out and do anything that doesn't involve Emily. Friday lunches with "the girls" that I have done for years, are no longer possible most weeks. Getting my nails done ... Heck, even grocery shopping ... Nothing is easy anymore. We don't have any nursing yet, and the palliative nurse who is supposed to be helping us with this is not returning calls this week. My mother-in-law is here helping right now, and I don't know what we'll do when she goes home. Even waking Emily up to get Jacob to school, putting her in the car to pick him up, these will all be huge challenges when she goes home. I am feeling very overwhelmed and frustrated. I belong to an amazing group of moms on Facebook who all have kids with AnyCephaly - micro, hydro, liss, pmg. There is a mom whose sweet daughter had lissencephaly, and was 22 years old. She passed away this week. My first thought, while crying, was that I can't handle the thought of losing Emily. My second thought, was that I can't so this until she's 22. That is another 14 years. I can't do this for 14 more years. I am so exhausted, mentally - physically - spiritually. And then the guilt of thinking something like that, much less typing it here and admitting it? Killer. What kind of Mom thinks that? I can't imagine either end of the spectrum with Emily and that is enough to tie my brain in a knot and leave me quivering in tears. Sometimes this life is incredible. Most days I think how lucky we are to be blessed with Emily. Most days she's just this awesome being, who gives so much more than she takes. Some days though, like now, I just think that I can't handle this much longer.