The Beginning...

Emma is now 8 and a half months..I don't know where the time has gone..she is so big now that when she is laying across me half her body is on the bed. Once she was able to get food in that belly she has not stopped.

For people that does not know..Emma was born with Pierre Robin Sequence(Syndrome)..this is a small chin and a cleft palate..this condition is not known until birth..you can not see it on the ultrasound.they said that up to the 14 week of gestation their chins are stuck in their collar bone, it pushes everything back and then it pops out and starts growing properly..the condition has a big range..some babies needing tracheotomy and jaw distractions just so they can be able to breathe. She was tranferred to the UT NICU because of breathing issues and since it is a bigger facility..she was there for 5 weeks..after they found out that she was able to breathe on her own after 3 days..(she decided to pull the tube out from her throat),so all they could do was take it out and see how she did..2 hours later she was breathing 21% of oxygen just like we do..her main problem was that she could not suck to get enough food..so finally they put a g-tube in her belly.When they told me that she would have speech therapy coming to the house, I couldn't figure out what can they do for an infant..she was great...she showed me how to work Emma's tongue to help the muscles get stronger..in no time she was able to suck like an ounce of formula...then she got strong quick with their help every week. She also had physical therapy every week. She has physical therapy still. She will need speech therapy when she starts trying to talk.

I decided when she was 4 months that I wanted to do more to help her build strength..I found The Little Gym...I actually forgot about it since I was not going to Knoxville a lot except to the doctors..it helped her see other kids since they were all older and was ahead..she sat by herself the first time there and then a few weeks went by she was able to sit longer..we are going back for the Fall semester and I can't wait to see what she does this time...


Emma is rolling around everywhere..I can't keep her still. She will be crawling everywhere soon and then there will be no telling where I will find her...
Therapy is helping so much. She is getting stronger everyday. She is able to hold herself up...I work with her a lot on her shoulder strength since that is where her weakness is.
She is making a c/k sound which I don't know where it is coming from since you need your palate to do it...she says it a lot when Keeyah the cat comes around..she still only says mom and Emma..I am trying to teach her a few words in sign language..she just looks at me..sometimes she does move her hands..

Emma will be having her palate repair surgery on September 21st..we had the meeting with the plastic surgeon today..he explained how he will do it..I didn't know really how they were going to do..it is at 7:30am so it is the first one that day so it will be started on time he said..the ENT first will put the tubes in her ears which apparently only takes a few minutes..we will be going to the Ear, Nose and Throat doctor next week to make sure they are putting them in, but I know they are going to have to...then he said that his part will take about an hour and a half to two hours.
He also said that she will be able to drink out of the bottle and eat soft foods...Of course I forgot to ask him about using the feeding tube..so I was trying to call them..hopefully he will say that we will not need it and I can call the surgeon to get it taken out..I am crossing my fingers...

The tube is pretty much in the way especially tummy time..it gets irritated quite a bit since she is on her belly more and moving around..she doesn't seem to let it bother her but sometimes it looks disgusting...Because of the palate of non existence, I try to feed Emma sitting in her bouncer, especially liquids. I was feeding her Italian ice while sitting on the couch and all of a sudden blue liquid is coming out of her nose. She does sit in her high chair when she is eating table food.

Her teething has been pretty rough the past 2 weeks..she cut 2 teeth so that makes 4..they are barely showing.. I can see them when she lets me but I can feel them when she tries to bite.
I could talk about her for hours..she is my princess..my girly girl...and she knows it!