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!

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.