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:)))

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!

Hospital World

Lily went in for a cardiac cath on Monday November 30th. We ended up staying for 4 days total. It was going well the first time Dr. Wax, Interventional Radiologist, came out. Then he said that he found some collateral arteries . So he coiled/plugged two of them. That should have made her oxygen levels higher. Finally he came out to say that they found blood in the lung in the lower left lobe which was blurry on the xray we later saw. In the end, we came in with Lily sating in the mid 80's and left with a kid sating in the 78 to 84 range and added Viagra/Revatio to her list of drugs. It was either that or go home with oxygen. I am waiting to hear from our card about the discussion that had about further steps for Lily they had in conference on Monday about her.

The best thing about our stay was again the nurses. They rock!!! It was strange being back in the PICU for the first time since 2007 after her Glenn. They were fantastic. Andrea, Rachel, Megan, Tommy...kept me calm and thinking about other things like travel and language, two of my favorite topics. aside from LILY!!


One of the nurses said that she knew how to take care of these kids in the hospital, but when her son was born, she had no idea! I would have never thought of that. 5 years ago I never would have guessed that now I would be able to understand when someone says " We are going to go in an explore the LPA and coil any extraneous arteries." I could sound like a nurse of a doctor now.


Speaking of medical issues, my cousin Cindy was featured on Mystery Diagnosis on the Discovery Health Channel this past Monday night at 9pm CST. She has MPA or microscopic polyangiitis. I had no idea how absolutely painful and invasisve this disease can be to your life. I hope Cindy stays in remission! Get more information at http://www.vasculitisfoundation.org/microscopicpolyangiitis.

Lily is starting to want to stand now and not fighting us when we help her to do it. She still fights the PT/OTs though. Big surprise.

Our Anniversary

Jim and I have now been married 6 years yesterday. It almost came and went without us both acknowledging it. We had a good laugh over it. We've been so busy with the move and Lily.

I was married once before. It was rather like being on an elevator with someone where you just happened to be there with at the same time. You weren't "together", you were just there. He would get on and off occasionally while I just stayed there, alone. And eventually I gave up and got off, and never looked back.

Eventually I met and married Jim. He is the most sentimental, thoughtful, creative, funny, sensitive man --not to mention great dad -- that I know. We have been through alot in the past year. And it seems like we have had to say that every year -- my cancer, Lily's birth and the following chaos, moving, and some other things I won't go into. But the whole time he has always been there. It is just fact that we are in this together. We didn't exchange cards or gifts this year, but just knowing that he is here for us is the best anniversary and life present I could ever get.

I love you Jim.

Fall Fun 2009

Just chillin'...LITERALLY!

I pick THIS one!

We took Miss Lily to the Cosley Zoo nearby again to see if she would pay attention to the animals. She didn't. I think my husband had more fun looking at and photographing a few of them. I was busy wondering if she was warm enough because I forgot to bring a blanket. We have been using a Peg Perego stroller that one of my sis's-in-law gave us that Lily loves. It actually has a cover that we could zip around her legs, but I forgot that too. What kind of mother AM I?? Well I know!:)))

Mommy and Lily

Daddy and Lily among the pumpkins

Moving On

Life throws crveballs ocassionally and one is that we had to move. We are still getting settled in altough our furniture made it here 2 weeks ago. I'm sad that Lily won't have her own swingset anymore and the dogs won't have a larger place to run and poop. But it's been good so far. We got to paint all the rooms the way we wished they had been at the old place. Lily's room is now shocking green/yellow color. It's Valspar's Tender Bud, but didn't turn out quite like the paint chip. Nonetheless, what's important is that it matches her personality! Bright! Happy! Feisty!

Speaking of That Girl, she is babbling up a storm lately with her own long sentences of Lilyisms. Duke-ah duke-ah duke-ah, namenahnamenahnamenah...In the morning I just lie in my bed and listen to her when she wakes up. She is definitely my daughter and Jim's being that she talks sooo much. Now if we can get her to say actual words. Our DTH has been impressed and says that she says things very clearly which is a good sign.

On the AT front we are getting a gaittrainer (KidWalk), a stander (Easy Stand) and a a chair (Leckey) which are all awesome. She has tried all but the stander. We have a great equipment guy that our Respiratory PT uses for Ei and his day job and he is awesome. Vince (www.pinnaclerehabsolutions.com)doesn't just walk away after fliping some switches and knobs. He makess sur eyou are absolutely comfortable withe the equipment and that the child is comfy in it too! We were going to go through Easter Seals for some communication AT evals, but they are months behind. So we are looking to Rehab Institute of Chicago which has a decent rep. We have a friend who brings her daughter there for ortho.

Please pray for our friend Moriah, www.momentswithmoriah.blogspot.com, who is a another little Charger who has spent almost a year in the hosital. She is much more complicated than Lily and she and her family are fantastic, warm people.

May 2010

Just want to make sure that any Illinois families are aware of this conference.

I received a flyer that said:

Save The Date
Family Leaders Conference
Illinois Family Leaders Collaboration Group
Presents

The Fourth Annual
Parent Conference

Resources and inspiration for adult family members and caregivers of children with disabilities

Saturday, May 1, 2010
Villa Maria, lake Springfield
Springfield, Illinois

Childcare will not be provided

For more information contact Mary Smith at STARNET
mk-smith@wiu.edu

I went to the one last year in East Peoria and it was so nice. Great families and information. Got to meet some other Charge parents there:).

Stomach Flu

Anyone else having problems posting photos on their blog? I keep doing what I always do and get a ton of HTML garbage...

Lily has just not been herself all week. Well, it sort of started the week before. She just was very crabby constantly. This week she threw up twice and was lethargic and very quiet. She is just now starting to get her babble back and some energy. We got to cuddle alot lately which is pretty new for us. This morning we laid in my bed with the Melissa and Doug farm puzzle on he rlap and watched Word World and Super Why. She watched every moment and I sang and read along so she could feel the vibrations. She seemed to enjoy herself.

We Love Autumn

So it's been awhile again. thanks to all of you have written and or posted too. i will get back to you. We are in the process of moving. I won't go into detail but we are moving over the month of September and at the end planning on having a giant garage sale.

We saw Lily's cardiologist last week and she said that we can wait on the cath for 6 months! Plus Lily has finally passed to 20lb mark! She has also passed gas:) LOL. Ok it's late. She has been doing ok on this new Elecare formula that we started at the end of July. She still fights eating by mouth. She has had a few very bad gassy episodes in the past week. We will have a meeting with her nutritionist coming up soon so we shall see. We just had her last annual IFSP. We have a new therapist on the team -- a Respiratory PT. I would have never have thought of this until Lily's nutritionist asked me to take her shirt off to see how she breathes. She referred us to Brian who is just excellent. Lily is not breathing correctly because of her heart surgery scar (as well as lots of other things) -- she doesn't use her diaphragm much and uses her neck and shoulder muscles much more. I think that the next Charge Conference should have Brian's mentor, Mary Massery, speak on this issue.

And I finally gave in....and joined Facebook. i guess Twitter is not far behind. Suddenly I have so many friends:)). I hope all of you ar ehaving a wonderful Labor Day weekend!

Hospital Time

Lily and I spent the night at Children's in Chicago. She had a CT Angio yesterday and then we stayed for 23 hour observation on 5. They have scheduled her for a lung perfusion scan this afternoon. Last Tuesday she had a cyanotic episode during therapy. We went to our local ER that has a Children's outpatient center. Her cardiologist came back from home at 11pm to do an echo when LIly fell asleep. She cooperated til the end when she woke up. Her stent in her LPA still looks good.

This past weekend we went to the 9th International Charge Syndrome Conference near Chicago. So very near us! It was great to see so many Charge families in one place. Such great speakers as well from all over the US, UK, Canada and Australia. We can't thank them enough for their care and concern and their information!! When we are back home I will put photos and videos up.