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??

Thanks Giving

I was reading an article today about a man who killed his autistic son and then himself. Morbid way to start this post I agree but it made me think about how grateful I am for Lily.

She is more than just this squeaking, babbling, squirming, hearing aid-pulling-out, giggling, crying, smiling sleepy, pooping toddler now.

She has brought so many new people into our lives. It started at the hospital where she was born and then at Children's in Chicago. We met great nurses, NPs and doctors. I met people from all over the world at the Ronald McDonald House. Then through Early Intervention we have met not only great therapists, but warm, friendly caring individuals.

I am thankful also for all the people that prayed for Lily through her surgeries. I am happy I still have contact with the people I used to work with that kept me supported and laughing through everything. When I was working I spoke to people all over the country and learned through some of them of their special needs children and their struggles and triumphs. It made me grateful to think of how easy Lily is -- it gave me perspective I didn't have before.

I am grateful to the moms that I met with heart kids at the hospital (take that HIPAA!!) and online. To Charge families I have met through the yahoo listserv. Every day they make my life easier by helping me vent just by reading their comments and wisdom and humor.

There are all kinds of families in this world and I am happy to be part of them and overjoyed to have Lily and Jim with me. Thanks to my husband's side of the family and to my brother, sis in law and my parents. I love you all.

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.