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:)))

NO LIFETIME MAX BABY GIRL!!

Whoooooo hoooo! No lifetime max for Lily and no denial of coverage for prexisting conditions. this matters sooo much to our family.

Who is hiding the sun?

Baseball season is coming!

Blossoming Beautiful Girl

We want it back here in Illinois. We want blossoming dogwoods and tulips and hyacinths. We want warmer walks in the park and sunglasses and light coats.

Standing!

Talk about a good day turning into a great day! Lily stood and I have the video to prove it!

Haiti

So I can't sleep but for thinking about Haiti tonight. It's so far away but I do have a personal connection to it. It was 1980 and I was about to be a freshman in high school. Our church put together a mission trip for HS students along with another nearby church. I have to forgive my memory for the names of some of the places we went to. We stayed at a Wesleyan mission on an island off the coast called Ile de La Gonave. After this trip, water became my favorite beverage, and I vowed that someday, if I had a child they would have to go visit a third world country someday to gain some perspective of their life. I don't know if Lily will ever make a trip like that, but with her you never know what she is capable of:).

I still carry these images in my head to this day....

Gretchen the head of the Wesleyan mission serving us gingerbread cake with lemon sauce (now wondering if she is still alive after all these years)...my brother playing soccer out on the salt flats with a little Haitian boy...groups of Haitian kids with orange hair and distended bellies from malnutrition...hearing the voodoo drums one night we stayed there because someone had passed away...hearing the angelic voice of a little Haitian child sing in the church that we visited-- they were standing under the one light bulb in the church that was dangling from the ceiling...riding donkeys for 2 hours up to the top of a mountain where there was a historic fortress (maybe this was on the main island of Haiti?) while women followed along side us balancing wooden crates of Coke in glass bottles on their heads...breadfruit trees on the side of the road...riding in trucks up to the mountains to a bat cave where woman would come with their malaria coated buckets and pails to get water for their families -- water became my favorite beverage after that...helping build the 36th well on that island of 60,000 people...picking up a rock and seeing a hairy tarantula...trying to explain to a young man what a curb (from the street in front of my house) was and how no, I did not have any children and no, i was not married (in that order)...swimming in the ocean with one Haitian girl who was fascinated with my hair and kept touching it (I am a redhead)...being surrounded during ou lunch as we sat in our truck by groups of hungry people and not being able to give them any..having the kids beg to see "Tee fee again" -- one othe HS student who was also a gymnast perform for them...asking someone how they were and hearing the truth because no one there ever said "fine"...

Haiti to me is an island of caring, hardworking people where there is no middle class and you are only rich or poor (mostly poor) and my heart breaks for them. I read on a blog of a Haitian mission that the island is fine (see my listing of References for two sites of Haitian missions) but that they get their food from Port Au Prince so they will be in trouble with the prices of gas and food so high now. People are taking these times to profit off of others misfortune in a time like this.

All we can do from here is pray for the people there and the ones that are going there. My friend Nancy in Iowa included this prayer in her Christmas letter this year: "Do not look forward to what might happen tomorrow; the same Everlasting Father who cars for you today, will take care of you tomorrow and every day. Either He will shield you from suffering, or He will give you the unfailing strength to bear it. Be at peace then, and put all anxious thoughts and imaginations." St. Francis de Sales

Milestone!!

The other nnight, Lily scooted over to our couch, grabbed onto it, stood up and witha little help managed to climb up onto it! She even tried getting her left leg up there to do it. Yay instinct! She did this three times in a row just before bedtime. She sat with us kicking her legs (thus happy) and enjoyed the new view. GO FEISTY LILY!