WE'RE BACK!!

Wow! I can't believe it's going to be two years tomorrow that I have been away from this blog. I have definitely been posting things about her to my Facebook timeline, but now I'm back. And you won't believe how far but we have come. I was reading my last post about Christmas coming up. Well here it comes again. Lily is very much into the tree. She stands next to the tree and takes off the ornaments sometimes and puts them back most times :-) she knows who baby Jesus is. She has her own nativity scene from Fisher-Price. 

And she is deaf and hard of hearing but she is oral. She has terrible balance, but she walks with assistance. She knows her letters backwards and forwards and she knows her colors. She never took to sign language, but she has not forgotten her fingerspelling. She can finger spell faster than I can read it. And she can read!! And we are not talking "go dog go" - we are talking compound complex sentences. I most give Sprout TV and Super Why a thumbs up and much thanks because that is how she has learned to read. She also is reading the captioning on the TV in our bedroom as well. She is amazing! She is in kindergarten although we held her back a year. So she will be 7 in April. We took her Make-A-Wish trip this past summer to San Diego and it was wonderful! She has just come so far!!

To be continued :-)

Christmas is Coming!!

We have had a busy summer! And Lily returned to school again in the fall and she has just come so far...She is working on signing and saying her numbers now. She does her alphabet -- she says it all slowly and when she gets to X...Y....Z!!! she is screaming like it's a countdown. She is so funny to watch. She has started to repeat things that we say so I told Jim he has to watch what he says! We are sending out Christmas cards this year for once. Our budget has been pretty tight this year but we will have a great Christmas thanks to some year-round and Christmas angels. You know who you are!! She continues to love animals whether it is a a rubbery lizard or Fisher Price Zoo animals. When she plays with them she is a little OCD and makes them all lie down. She has discovered our kitchen as well. She scoots in there to play with the Diet Coke fridge packs we have on the floor. She likes to unstack them if they are full and stack them up end to end very tall when they are empty. And when she is done I pick her up to take her to the living room she says "buh-bye". It is so cute. She has grown talled too. We are going to adjust her KidCart because her knees are getting closer to her chin. Her pants fit better cause her legs are longer, but she still has no hips so alot of them slide down. We received a ton of 3T clothers from a family we met at Illinois School for The Deaf, Heather and Matt. A shout out to them for being so generous!! I have a bunch of smaller girls clothes tat run from premie to around 18 months. Please post if you know someone who could use them. She is learning so much in school including greetings. She does not say Hello yet but the other day I said it sarcastically like "Hello, get a clue" kind of tone and of course she picked right up on that and yelled Hellooooo!?! giggle giggle giggle... She had a sedated echo the other day at CDH and nothing has changed, which is the news we want to hear. Her LPA is still the same size so no Fontan yet. Plus she only weighs around 22lbs and we have to wait til 30lbs. She lost a little weight recently with the stomach flu while we were at the hospital for the echo. Maybe she will have the Fontan at the new Children's which I saw slides of at a new group I am part of called Mended Little Hearts. If anyone who reads this wants to join we meet at CDH monthly. And I can't tell you how nice it is to walk into a room of people and not have to explain ONE THING. They just get it!!! Weeee!!! I have also joined Facebbok end of last year but this year have become friends with many Heart and Charge families and it has been a great support. It is a great community. I will upload pics with my next entry after the New Year.

To all of you out there...Lily's back!!! And I will be updating this on a regular basis again.

Merry Christmas to all of you!!!

The Little Things

The other night we were watching The Good Night Show on Sprout TV with the hosts, Nina and Star. Lily loves it. All of the sudden Lily says "Nina-nah". Wow!

And then today Jim and I were just watching her and she starts going through her animal sounds she knows -- Go-go for goat, ba-ba for sheep and then she starts chirping like a bird. Then she raised her hand up (she was lying on her back) and signed bird!!!

Up You Go

Lily will not STOP tall kneeling lately -- all on her own mind you. She does it to our ottoman and now to our low entertainment center base. Thank God she can't reach the TV I made the living room gorgeous last week -- dusted, vacuumed, everything -- and now it looks like a warzone. She is getting into things she never even bothered with ebfore...and BOY am I happy!!!

Keep Calm and Carry On

I knew had to post this sooner rather than later...

I don't know what she has in store for her in the future. I have hung on to hope this whole time from her birth. I have not given up once to think that she might be like any other little girl. I didn't get to take her right home after she was born. Granted I knew about her heart condition and that she would be taken from one hospital to Children's almost immediately following her birth. It felt surreal. But now she has been home for a very long time and turned 3 here, in our home.She is not a three year old. Not in her head. She has autism and I denied it to the Doctor straight to her face, stating that Charge has autistic-like syndromes. But since February I have noticed things. She was the youngest littlest feistiest girl in her class this past school year. She wants to be by herself, play alone, not be held. Just once I would like to just take her to somewhere, anywhere, and not have to pack formula and syringes and have her cry if we sit her down in the grass. Just GO.


I don't want to lose hope. I don't want Doubt to rear its ugly head in our home or in my head or heart. How could I doubt her when she has come through so much all by herself. Granted she's been through alot of surgeries, and doctors and nurses have helped. But Lily pulled through and I have to remember that. I just want her to pull through life. I don't WANT to be unhappy with this version of Normal that we have and that so many other families have. I hate not being able to read the last chapter in a mystery and, mind you, I love good one. I always try to guess who did it and how it will turn out. In this case it isn't possible and I guess I have to accept it.

Fast forward to the other night: When Lily was too tired to fight sleep anymore, she laid on me while I sat in the "rock the baby to sleep" chair that we bought before she was even born. She simply settled in on top of me watching Sprout TV. And it was kind of, well, normal. :).

Rainy Days and Fridays

Lily has been doing what I call "side crab crawls" lately. She kind of has her head down like in a 5-point crawl and scrabbles across the floor like a little crab. She loves standing with my help. She'll scoot over to me if I put my hands out and start to get up before I can almost grab both hands! She also has been tall kneeling next to our ottoman. Reminder - never put your purse or coupon box there if you want to be able to find your wallet the next day and not spend it looking -- and filing coupons all over again!

New Experiences

So where did I leave off...

First, politics. I found it ironic this morning as Lily and I watched Dive, Olly, Dive! on Sprout that they were cleaning up an oil spill! My heart goes out to the many families and animals and ecosystems affected by this Gulf disaster.

In February if i haven't told everyone already, Lily was diagnosed with Autism Spectrum disorder which explains alot of her antisocialness (is that a word?), her rocking and her arm flapping. But then again, Charge has quite a few autistic behaviors as well.

We saw our ENT who said he has a few new Charge kiddos in the area he is seeing. We also saw Lily's cardiologist for a sedated echo. It took a while to get her down but everything is ok. Both of them want to see Lily in 6 months. Yay!!!!

Lily had her 3rd birthday on April 14th. We actually celebrated the weekend before. Grandma and Grandpa gave her the A to Z Learning Zoo. It has a pad you can put all 26 animals on and learn the letters and their names. Lily was fascinated when she sat on it and heard it talking to her. She grabbed the edge of the pad and turned it over...she just couldn't figure out where the sound was coming from! She likes to look at all the animals one by one and then put them back into the carrying case when she is done. She is very neat at times. A little OCD I'm thinking! She got lots of of the cutest clothes from Grandma Karen, Papa Jim (yes my in-laws names are the same as ours!) Aunt Julie, Uncle Jamie, Aunt Stephanie, Uncle Dan and all her cousins -- Emily, Michaela, Jake and the newest one born April 8th, Jason. He is a chunk of cuteness. GO BUB BUB!

Along with Lily's bday came school. Her IEP was a breeze. GREAT school district. She has her very own airconditioned bus to take her to and from school. We love the drivers and the aides as well. Can't start my day without a hug from Frances!! Lily takes her hippo Hugo to school every day where she has a wonderful nurse, Patty. I got to go to school for the first few days and feed Lily (gtube) before Patty was hired. She has 15 grandkids so she is great with Lily. The school is about 1/2 hour from our house and has a great Deaf/Hard of Hearing program where they sign all the time. Once again we are still having trouble getting Lily to wear her hearing aid. Grrr. We still have too get some feeding services and OT/PT. It never ends. the important part is that you just keep moving forward.

I having trouble today with adding the photos where I wanted them but so happy to be able to have "updated" our lives. All the best to everyone who drops by here to say hi!! Let me know who is all out there:)))