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.

The Parent Institute and Politics

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

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

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.