More Doctors?

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!

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

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

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

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!!!

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!