Miss Lily's Pad

Christmas is Coming!!

2010-12-10T09:09:00.005-06:00

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

2010-06-24T18:40:00.003-05:00

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

2010-06-15T20:39:00.002-05:00

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

2010-06-11T17:45:00.006-05:00

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

2010-06-11T13:03:00.005-05:00

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

2010-05-31T10:56:00.006-05:00

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!!

2010-03-21T21:50:00.002-05:00

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?

2010-03-09T17:02:00.005-06:00

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!

2010-01-16T02:19:00.000-06:00

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

Haiti

2010-01-16T00:57:00.006-06:00

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!!

2010-01-13T01:17:00.002-06:00

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

2009-12-09T09:48:00.008-06:00

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

2009-10-26T05:04:00.006-05:00

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

2009-10-17T17:35:00.009-05:00

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

2009-10-08T14:17:00.003-05:00

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

2009-09-17T16:32:00.002-05:00

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

2009-09-17T16:16:00.004-05:00

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

2009-09-07T00:21:00.002-05:00

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

2009-07-31T09:07:00.011-05:00

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.

The Parent Institute and Politics

2009-06-22T14:48:00.017-05:00

GO WHITE SOX!!

Walk out the door today into a wall of humidity. Take a shower, step outside and be ready to go inside to take another one. Lily and I are going nowhere outside today. Once again I have been behind on the blog. It's just so many things happen every day that it's hard to write it all down. And please forgive me for the hyperlinks listed below as they are formatted properly I don't think.

Sleeping on Hugo The Hippo

On the Road

Jim, Lily and I took a trip June 7th for the week down to Jacksonville Illinois, home of the Illinois School for the Deaf http://www.morgan.k12.il.us/ISD/ for the Parent Institute http://morgan.k12.il.us/ISD/pdf/pibrochure2007.pdf. It was one of the most emotional, stressful times we have had since Lily's first heart surgery. We stayed in the dorms there and had a pack and play for Lily. We were lucky enough to get a room with a bathroom in it! There was barely enough time take photos between meals and evals and appointments. We will be receiving a CD with photos and videos of our time there though. I will post it when we receive it!

Lily got to go to preschool every morning while we went to group counseling, sign language class and lectures on things like cochlear implants, different methods of communication (ASL, Signed English, Cued Speech, etc). Every afternoon while we were at another lecture or an appointment, she would get to hang out with great caregivers in the downstairs living room of our dorm. We had one night where the guys from the ISD football camp ran "Deaf Town". We learned about equipment for a deaf/HH home like fire alarms with lights, Sonic Boom Alarm clocks along with Blackberrys for texting your friends, TTY phones. We had to "order" food at a restaurant in sign, learn the correct ways to sign No and ways to sign expressions using facial emotion. That was just one evening and we could have used a whole afternoon so we would have a longer chance to talk to the ISD football team about their lives as deaf/HH teens.

Lily was in the Frog class in Classroom B. She ended up at graduation as the Feisty Frog. We have the inflatable frog they gave us that says FIESTY on it on top of her armoire in her room. Whenever we ask "Where is Feisty Frog?" she turns around and points straight to it. Most of the time that is unaided! Go Lily!

Ok now I have to go off on a political bent because ISD and Illinois School for the Visually Impaired (also in Jacksonville) are at risk of being closed as of July 1st if the "50% budget" is not changed. THIS MUST NOT HAPPEN. If you are in Illinois, please call your legislators TODAY to demand a tax increase and a budget that reinstates human services.

Michele Westmaas is one of the fantastic moms I have met on my Charge Yahoo Listserv. She has a blog at http://momonamissionblog.blogspot.com/. I have been on her case to start writing again and I hope she does but please read some of her past pieces. She was one of the presenters at the Parent Institute as well. She spoke about her experience with her daughter Aubrie and IEPs. We learned to remember the phrase "It's what my child needs and what's appropriate" and not to use the word want. Get a copy of the board of Ed Blue Book and let Lily play with it, put a coffee cup on it. You want to at least LOOK as if you know what you are doing. Also remember that if you are getting emotional during the IEP that you are the one in control and can take a timeout when you need to (me emotional? what?. This info will be coming in handy soon because we will be touring a possible school for Lily in September.

At the Institute we made the decision that ASL was the way to go for Lily. This is not just a little choice for her either. At the Institute Lily was evaluated by a psychologist, audiologist (Beth from Dr. Young's at Children's), a vision person, an Early Childhood person (Karen is awesome!), Dr. Snyder ENT from Northwestern/Children's. We have asked to Beth get with Dr. Young to review the MRI Lily had ages ago and see if she is a candidate for a cochlear implant. I have a list of at least 30 things to do or to look into.

It was overwhelming to get all of this information. We are so blessed to have been one of the 30 families that was able to attend. The people down there we would like to thank are Sue Brosmith, Lori McKenzie, Dr. Nancy Scott, Dr. Greg Long (GET IT IN!), the ISD Football players, the daycare providers in Preschool and the Dorm (Kate and Michael and the lady who made Lily two little bags) as well as the ISD football team and a ll the families who added to our Sponge-like experience downstate. Thank God for Parents Night Out!! (Dolly it's DSCC NOT DCFS:))) I hate to think that this may have been the last year for the Parent Institute.

Silly Lilly!

Easter Lily 2009

2009-04-16T01:39:00.006-05:00

We celebrated Lily's birthday this weekend although her birthday is 4/14. This year she did not have any tantrums when everyone was near her and she actually started playing with some thing right away that she received. usually she has to be exposed to toys more than once to want to even touch them. My parents got her a Vtech helicopter that is a real winner with her. My brother and sister-in-law got her a Leapfrog Lily doll:)). We still have to get that out of the box. She got lots of clothes from my husband's side of the family as well.

I can't believe that she has made it this far! We are so happy to have our little girl still after all that she has been through. God Bless RJ and Seamus who we still think of often.

Long Time No Lily

2009-03-10T18:22:00.010-05:00

Ok..so you noticed there was nothing new for a while and I heard that Lily fans everywhere were clamoring for more!!!

As of December 31st she decided that she WANTS to sit up and stay up. Nothing like walking into her room and there she is hanging her legs through the slats of her crib and ALL the toys are on the floor...Wow!!! And TODAY just today she decided she would try standing more than a little but at our coffee table in the living room. When she started to get tired after a record 10 minutes she started leaning her butt back against the couch and finally slid to floor with her legs scrunched in front of her.

We just had her 6 month IFSP and are going to try to find a stander that can be converted into a walker. Hopefully EI will be able to find one from a DME company that is used so no one has to spend tons of money on a customized one.

January 14th our new niece, Emily Grace was born. Mom and Dad are doing great. Emily is having issues with gas.

On January 21st we spent two nights at Children's in Chicago. We had a nasal dilation, ear tubes placed, an ABR and an ASSR. We had to fight at a ENT appointment prior to that day to get an ABR. i won't mention the name, but it;'s the ENT we use for her ears. I said I wanted the ABR. Apparently that wasn't good enough so I had to mention that the aud at Easter Seals thought it was a good idea. Then they said ok. The ENT who handles her nose, Dr. Schroeder, we love. When we arrived for the surgery he said "What? I thought one of the reasons for all this WAS an ABR." Well she did not change over one year. We were going to have another hearing aid put on her bad ear, her left. But apparently after the ASSR said there was really NO hearing, there would be no binaural benefit.

We are trying to add a speech ASL person to our team too. the one we wanted lives too far and will not come. There is another option but i don't know who that is.

One terrific thing that happened (thanks to Dr. Schroeder) was that I met another Charge family from south Chicago. they have a 4 month named Ashley. She is cute as a button! I passed along as much info as i could about the Charge Conference (they already knew), the Yahoo group for both Charge and CHD and also CICircle I think. They are great advocates for their daughter and have a terrific attitude.

In February we saw a Neurologist, Dr. Swisher. Lily's left eye has been twitching occasionally. We were also curious about her mouth which is kind of lopsided when she cries or laughs. He diagnosed her with Asymmetric crying facies which is frequently associated with cardiac patients. We will have to set up an EEG for the eye issue.

Thanks to those of you out there who have asked about Lily -- whether from my old work, Jim's work, our Charge family, or our EI teammates:)!! It makes life easier to know you are not alone.

Christmas 2008

2008-12-30T00:34:00.008-06:00

We had a great Christmas. Christmas Eve we spent at my parents with my brother, Chris, and sis in law Mary Jane. During dinner my mom tried passing me the wild rice, knocked my red wine glass over and succeeded in marinating not only the floor but our Christmas ham. It was delicious (the ham, not the floor!). We thought we should start that as a new tradition and maybe someday Lily can spill the wine!

Lily we found is not fond of wrapping paper or unwrapping things. We got a wonderful gift of the Vtech Spin N Learn Top just before Christmas from Emily our Speech therapist:). Lily pushed it away. Oh well! She loves the toy, just not the paper.

She is a very blessed and lucky girl to have great grandparents and cousins who love her so much!

Lily is a Trooper

2008-12-18T01:41:00.014-06:00

So i haven't written in a while...To sum things up. Lily had and still has fluid in both ears. Going on a month and 1/2 now I think? So she has been without her hearing aid for some time. She can't wear it because it would distort the sound that she receives from it.

Fast forward to December 12th...I took Lily in to see her ped in the morning because she was miserable. She was screaming and screaming like no other cries we had ever heard for a few days before that. I was told she had a cold. no fever though. I took her that afternoon to see her ear ENT doc. She said that it would be ok for our nose ENT doc to do ear tubes (FINALLY!!!!), as well as the nasal endoscopy. When I asked for an ABR, she kept saying Why? Hello!! I want to know if she is declining. Mom. Didn't seem good enough for her so I mentioned the aud at Easter Seals. Then she said ok. So we are shooting for January 21st. It will be an overnight stay in the obsevation unit. So after that I have seriously considered switching her ear ENT to a great doc at Comer's. We shall see.

So I am trying to change her diaper the next day, Saturday. Her crying is so heart wrenching that I get nauseous, call for Jim to take over and run to the bathroom. I just could not bear it. When she is not sleeping she is just crying. So we took her to the ER at our nearest hospital ( the one where she was born). They took an xray to check things out. We swapped out her Mic Key button a few days before and that was fine. It ended up that she had a severe case of gas. We ended up with a great nurse that had once worked at Children's, Deanne. She had worked for Lily's former GI as well. She said that we should have been told to vent Lily via her Gtube. Well, DUH, I thought. I felt awful because it was such a simple thing. But no one told us. Not the ped surgeon who put it in, not the NP, not a nurse. I spoke with her hearing therapist on Monday and she said we should try and do it before every feed if we can. And, I thought, before spending 20 minutes giving her meds so it doesn't all come back up. I think I will be calling one of the GI guys that her ped suggested after all.

After venting we got our old Lily, Lily Bean, Bean-Bean, Sweetie Bean back! She is all smiley and happy and babbling again. because of the cold we had to cancel her Video Swallow Study. Hopefully today we will be able to reschedule it soon.

Caught on film just before OT this week

And during PT this week

This ISN'T Speech therapy day??

Stacking therapy

See...this HAS to Speech day! Isn't this my sippy cup??

Thanks Giving

2008-11-24T06:07:00.002-06:00

I was reading an article today about a man who killed his autistic son and then himself. Morbid way to start this post I agree but it made me think about how grateful I am for Lily.

She is more than just this squeaking, babbling, squirming, hearing aid-pulling-out, giggling, crying, smiling sleepy, pooping toddler now.

She has brought so many new people into our lives. It started at the hospital where she was born and then at Children's in Chicago. We met great nurses, NPs and doctors. I met people from all over the world at the Ronald McDonald House. Then through Early Intervention we have met not only great therapists, but warm, friendly caring individuals.

I am thankful also for all the people that prayed for Lily through her surgeries. I am happy I still have contact with the people I used to work with that kept me supported and laughing through everything. When I was working I spoke to people all over the country and learned through some of them of their special needs children and their struggles and triumphs. It made me grateful to think of how easy Lily is -- it gave me perspective I didn't have before.

I am grateful to the moms that I met with heart kids at the hospital (take that HIPAA!!) and online. To Charge families I have met through the yahoo listserv. Every day they make my life easier by helping me vent just by reading their comments and wisdom and humor.

There are all kinds of families in this world and I am happy to be part of them and overjoyed to have Lily and Jim with me. Thanks to my husband's side of the family and to my brother, sis in law and my parents. I love you all.

More Doctors?

2008-11-17T23:07:00.002-06:00

Lily had her hearing therapy today with Cathy who is a deafblind specialist and sees another of our local Charger families. I heard that Christian is back home now and laughing and feeling better!! Yeah "Little Chicken Man"!

Cathy noticed that Lily's left eye was squinted and fluttering. She was having a muscle spasm in her eyelid. I told her that we had seen this before and that her eye doctor didn't make any big deal out of it. Cathy pointed out that her whole face on that side was kind of moving and said we should get with a pediatric neurologist. With Charge I guess it could be cranial nerve issues. I don't what they would do for it. But i do know this issue is becoming much more frequent.

She did make it all day today without a headband over her hearing aid and DID NOT TOUCH IT! Wow! Amazing! Never thought I would see THIS day coming this soon. But tomorrow she could be Little Miss Feisty again...

We are probably up for another nasal endoscopy and most probably tubes in Lily's ears per her Nose ENT. I have to check in with her Ear ENT December 12th. At least the Nose ENT could do both procedures at one time and she would probably just stay overnight at Children's again.

Please keep little Vivian in your thoughts and prayers if you read this as she is having Choanal Atresia Surgery this Wednesday. She looks like Lily's little sister!!

Sitting Pretty!

2008-11-12T21:11:00.003-06:00

Lily sat by herself for 4 minutes yesterday with her OT therapist, the fantastic Melissa. She did a few more minutes today with Michele her PT. She really has not wanted to do tummy time. Or sit up unless it's in her high chair or on the couch or in her crib. She has been trying to lift her head and shoulders off of the mattress, changing table and the floor though. I have a feeling if the light ever goes on then we will be in BIG trouble.

I took Lily to the eye doctor today. She said Lily's vision is great considering she has the coloboma. She said she will probably get glasses in a year. She is nearsighted and has astigmatism.

So good news!!

Busy Month

2008-10-30T15:16:00.004-05:00

Yes it's been a while since I had something to put out here. I have a fever and Lily has a cold. fairing pretty well but I think I am getting it now and I'm sure Jim will be next. We have a Devil Bliss suction machine, but don't really need anything more than the squeeze bulbs to get the boogers out. All I can say on the topic of her cold is: If you are sick and will be at a similar gathering as Lily, don't go. If you still have to go, then one of us will stay home with Lily and you will not being seeing her. Getting down off the soapbox now...

I had my MRI this past weekend and nothing was found. One less year of worry.

Props out to Hannah --Vivian's Mom -- for an excellent post on "sisters" who GET IT!! Thank you so much for a such a smile/tear inspiring piece.

Wonderful Week

2008-10-03T20:53:00.014-05:00

Last Sunday my parents had a party for their 50th Anniversary. They decided to have an openhouse at their townhouse and have it catered. It was a great success. Lily "held court" in their den and got to meet all of my parents friends and relatives she hadn't seen. I think my parents are great people and are lucky to have so many friends. On Monday they are going on a cruise to Hawaii to celebrate. Jim took this series of photos. I just love to watch the way my dad just loves Lily. He is so proud of her.

Today my best friend (yes I know that phrase is, like, soooo high school but she is!!) Kathy took the day off and we went over to Cosley Zoo. They have it all decorated with cornstalks and mini pumpkins and LARGE pumpkins. We saw baby goats that came and kissed me. I think those were Lily's favorite part. I had her wearing a White Sox jersey but she really was not liking it so I put on her Bears hoodie and she was satisfied. We had some cider and I let Lily have a taste. She must have liked it because she kept licking her lips!

Tough Day

2008-09-24T12:13:00.005-05:00

I had an encounter with kidney cancer a few years ago and have annual MRIs. So I called in to ny favorite nurse at Northwestern Memorial today. Sandy has been great over the past few years even though I only met her once. I can go to the Galter Pavillion now instead of a satelite location to have my chest xray and MRI now. I had a partial nephrectomy of my right kidney. Dr. Smith was awesome and took off about a third of my kidney and then shaped it up with some spare body fat. I tried to get him to take out some extra at the time but he said he couldn't. I have had some ongoing pain on my left side and I am hoping that it is just saggy post-partum muscles and not anything serious. I will be able to go next week.

On a brighter note, I have been able to get Lily to mimic "Mom" now! She usually says it with her tongue in between her lips. it's funny! She does do it deliberately too but doesn't babble it like she does Dada all the time. She is such a peach!!

Yesterday we spent an hour in my room on our queensize bed and she was squirming all over. She is sooo strong now. I was able to trick her into tummy time multiple times and we just had so much fun.

Boo....Hoo!!!

2008-09-20T20:37:00.003-05:00

We drove over to the Naperville Riverwalk and arrived too late to see all the artwork. Maybe early tomorrow? (Yeah, right...on a day with football? Not!) We went to Potbelly for a cheap meal and swung by the Super Target to get some groceries. As is tradition we had to check out the Halloween section. We went by one of those treat bowls that lights up with flashing eyes and a hand pops out to scare you and then quickly disappears. Lily was right there when we pushed the button and when the hand disappeared and the scary music stopped....WAAAAAAH! NOT a happy girl at all...poor kid. We both thought that she would probably laugh. I mean how do you know at that age that one kind of music is scary anyway...Poor Lily. It took quite a while to calm her down. We let her touch some of the fuzzy kid costumes and look at the lighted small Halloween houses and then she was all smiles. Who knew a kid with a coloboma would love lights so much? I think this year we might actually open the door. Last year by the time I got home we had 3 kids stop by total. It runs from about 3pm to 7pm. I might even dress up

First Tooth!!

2008-09-16T12:36:00.003-05:00

We have one tooth now in Lily's mouth. FINALLY. She has been very crabby lately. In fact yesterday her DTH thought she may have yet another earache. She actually had her first temper tantrum I have ever seen too. Today she had another. This is not the same girl that did so well in therapy last week. She would not be put in any sitting position at all or roll on her side yesterday or today. i am taking her to the ped today.

But last week she was amazing!! She sat up (or should I say stayed in a sitting position) for Jim and for 1.5 minutes. Her old record was 50 seconds. She is grabbing things so much now..including Jim's White Sox cap. Maybe spending time at Children's (in Cubs territory!) was not such a great idea??

I have been worn out lately and very tired myself. Probably need to eat more vegetables my mother would say!

Progress

2008-08-29T14:42:00.003-05:00

Lily in her favorite toy -- her Exersaucer!

You leave for five minutes to work on your blog and then this happens....

I don't have to "set up" these pictures! She's quite good at digging her way through her toys to get where she wants to be!

We had Lily's IFSP last night with her team. We are going to try a sippy cup through speech instead of just a bottle. EI will try and purchase that for us. Also they are going to order a gair trainer along the lines of the one Christian McCants has which is customized. It will be a short little thing! Overall she is coming along very well. We want to get more nutrition into her so we will be going to Easter Seals for that as well as audiology. She was 18 lbs on Monday and now she is 17 lbs 15.5 oz. But they reminded me at the IFSP that heart kids burn alot of calories.

We had a well check today to get all her vaccines up to date. I knew we were a bit behind on those. She was supposed to get 8 but he didn't want them all at once. So we got 5 including MMR. The nurse at Illinois Department of Public Health that has followed Lily since the beginning called just the other day coincidentally. She said she wanted to let me know there had been an outbreak of measles in Dupage County and to make sure Lily gets the vaccine. Well now it's all done. She cried loudly during and right after the shots. I told her "All doone!" about three times and she just shut off the crying. Nurses/doctors are always amazed at that!

She had a earache diagnosed just this Monday and Dr. Liber said it seems to be on it's way out. But Sunday, Monday...what day is this? days and nights have been rather rough for her. Yeah for Tylenol!

Long Days....Night

2008-08-20T01:47:00.005-05:00

Today I had barf first thing in the morning from Lily. I was trying to tell Lily this barfing thing (from an overnight feed no less! Never usually happens) was so 6 months ago but she wasn't listening - she fell asleep on the changing table so i strapped her in. That was followed by not being able to find my cell phone (we are landline-less here) to call and put off Lily's OT appointment. So Melissa came anyway to teach me brushing and joint compression therapies. Then Lily woke up and was able to play pretty well with us. She did not mind the therapies at all. I will have to work up to the 4 to 5 times per day she said I should be doing. We have therapy every day but Friday and I am overjoyed thinking about that. Hoping the weather will be beautiful and not so humid so we can go for a walk or to a new park or something fun. I have been inside for 2 days and getting cabin fever.

Sort of off topic...I have found a new sippy cup that I want Lily to get a chance to try. I always worry about bateria building up when I have to take formula everywhere. Especially with the 3 hours until each feed. (She is gtube fed or did I mention that??) The cup is the Foogo Sippy Cup from Thermos. I will give a review at some point after we manage to buy it.

Tonight was pushing past my limits too because Lily screwed up her sleep and her feeds and would not go down. I oped her box from the vendor we get our delivery kits for the pump and they were not the right bags. After a call to them they said that Paul who lived nearby would be stopping by to drop them off along with the backordered MicKey button. Yeah! When he stopped by I was on the phone with unemployment trying to find out where my check was. So frustrating. Needless to say that she went to bed about 10 minutes ago finally and so will I.

This week in Lily's World

2008-08-16T01:02:00.004-05:00

Monday we had an appointment at Easter Seals to check how she is hering with her hearing aid. They made a great ear mold for us the last time we were there. Her DVH (Developmental Hearing Therapist) came with and sat in the booth to watch Lily's reactions while the audiologist tried some noises. She did pretty well for a first time (without fluid in her ears or an ear infection), her timpanogram for her ears still is flat so that is still a mystery. I wonder if other Chargers out there have the same issue or if this is just one of Lily's quirks.

We had PT also and she got herself worked up and threw up. After a little recovery time we did some work on the ball and she enjoyed herself. She was a trooper.

She had her vision eval as well. it is really hard to put anything past her. Now I just have to remember to make an appointment with her eye doctor!!

Her IFSP is coming up August 28th. I hope we have all our ducks in a row for it.

Come Fly With Me!

2008-08-01T18:47:00.003-05:00

I filmed this with our camera (not the video camera) actually so it is a bit shaky. Too bad I can't edit out my overabundance of baby talk!!

More Photos!!

2008-08-01T17:31:00.005-05:00

She loves hoodies, sun hats and has officially inherited the remote from Mommy..yes MOMMY..NOT Daddy:)!

2008-07-29T14:21:00.003-05:00

Cutest baby in the WORLD!!

Calendars

2008-07-29T14:12:00.006-05:00

Trying to keep Lily's schedule straight again with all her therapy is kind of making me crazy. Speech, PT, OT, DTH, DTV, dr.'s appointments...It's not like I haven't dealt with it before when she first came home from the hospital. It is just taking a bit of getting used to again I guess. I am so lucky to be able to spend this time with her. I hope I can end up spending this time with her for a while. We have a great team for her and her next IFSP is coming up on August 28th. We can order a walker for her then and start down that road.

I have to set up an appointment with Dr. Young ENT who specializes in cochlear implant surgery and see if Lily would be eligible. Her cochlea are malformed so they don't always do that. There is a group that meets monthly at Comer's (University of Chicago) and they will be reconvening after the summer in Spetember. I would like to see what our other options re: doctors are for this issue. At least there are some options since we are so close to Chicago!!

This whole journey is complicated. You have one map and then the signs don't match and so you get a map for that area and then another...it's a long road of tangents. I think the first stop was lining up Lily's doctors, then her therapy. I think that having those figured out are part of this journey. Dr. Dana Suskind at Comer's may be another. We shall see!!

Who's On...

2008-07-26T19:08:00.004-05:00

First blog! Woo hoo! I was finally inspired to do this by Hannah from California (Viv's mom). It is what it is. But I think this could seriously be an outlet I could use right now.

Last week on 7/16 I became one of the officially unemployed. Yes, it my 3rd layoff after my 4th merger. We'll see how this goes. The best part of it is that I get to be with Lily again for all of her therapy and doctor's appointments, etc. She is a morning baby and I am not a morning mommy at all. I'm sure God decided on that!

Today we took Lily to Cosley Zoo in Wheaton. She saw some sheep a horse a goat and then the backs of her eyelids. I am still getting used to her sleep schedule. Right now it is defined as one nap in the morning and one in the afternoon. When specifically is up to her... I can thank Children's Memorial in Chicago and the great nurses there for her self-soothing tendencies. She could play in her crib all day without one peep. She is quite a scoocher (not sure if that is a word) and lays on her back and pushes with her feet to get around.

As I mentioned, Lily has Charge Syndrome. She was part of a genetic study when she arrived at Children's. She has 4 heart surgeries, 1 choanal atresia surgery, 5 nasal endoscopies, 2 cardiac caths, gt tube surgery and a partridge in a pear tree...She has a retinal coloboma in her left eye; heart issues (Double Outlet Right Ventricle with aortic stenosis and Ventricular Septal Defect with coarctation -- whew!!); ear issues (severe hearling loss in the left ear and mild to moderate in the right) and is gtube fed.

Ok. More than you wanted to know. I never in a MILLION years thought I would know this much medical terminology in my life. And yes now I can sound like a nurse. Halloween is only a few months away. Lily could be the doctor! Back to topic...If you are one of my friends you know I could go on and on. And I think I will do it another day because I have held myself back from running into the other room to go play with my daughter!