Boo....Hoo!!!

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!!

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

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

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

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!

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!!

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