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.
