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.

Christmas 2008

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

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??