Wile Away

Another successful week at home. We started off at 1.5 lpm and we have gone down to 1.25 lpm as of yesterday.

We started off Monday with an appointment with surgery to follow up on her g-tube and fundo surgeries. We have noticed lately that she is starting to do some coughing and retching like when she had reflux, so the surgeon wanted us to increase the time to feed her from one hour to two to see if that helped. It seems like it has helped a little. We have another appointment scheduled to follow up in case we are still concerned. He said that sometimes the fundo gets loose, but they wouldn't know unless they did an x-ray. He also took her off of the prevacid, so now we are down two meds to six total (last week pulmonology took her off of flovent).

After that we had an appointment with the opthomologist. After a very thorough eye exam...we learned nothing new. She has nastagmus (side to side scanning of the eye), strabismus (crossed eyes) and a amblyopia (lazy eye). The lazy eye can be corrected with the patching, the crossed eyes with surgery which is not recommended until she is 3 or 4 years old and since she things the nastagmus is "central in origin" meaning coming from the brain, there really isn't any therapy, surgery, glasses, etc. that can correct this. Nastagmus may or may not affect her vision. Natagmus may or may not get better over time.

She wants to follow up in a year and she really was very firm about us getting more serious about patching telling us we would regret it later when she was older and we would have to sit on her to wear the patch. So as soon as she gets up in the morning I put it on her and play with her in her face for two hours so she won't play possom on me. Hopefully it will get routine and she won't resist after a while.

This week we have been weighing all of our therapy options. We could pick between: 1. a place the doctor vetted for us to come in home 2. ECI or 3. a place we go to. I think we have decided to just drive her to therapy. This will be pretty taxing getting her in and out of the car, packing up all her medical equipment, meds, diaper bag, oxygen tanks, stroller, etc. by myself multiple days during the week...but the amount of times the other places could provide her with therapy were not adequate for her needs. She needs to work with PT several times a week and the other places would have to wait list us or only work with her 1x a week.

Grandad and grandmom came by last night and we had a nice dinner of shrimp, potatoes and corn. We put her in her bumbo and she sat and socialized with us. I let Amelia lick my corn and she loved it! I went to Babies R Us today and got her a big girl high chair so she can sit with us. Her legs are getting so chubby she is probably going to outgrow her bumbo soon.

We continue to have fun. She enjoys patty-cake, isn't quite sure about peek-a-boo and loves her bumbo and jumparoo. She wants to be sitting up more than anything so we practice our sitting up skills as well as tummy skills. She has been rolling over more for me, but she can only do it if I prop her up on her elbows.

I bought Amelia a pretty dress today for Easter so I can dress her up and do some photos that I can have framed and put up in the house. I also bought some cake mix, frosting and a candle for her big day. Aunt Marian has made a dress for her to wear on that day, so we will have to do plenty of pictures then, too.

Aunt Marian and Amelia's cousins Mia and Emily are going to come the week after Easter for their spring break. They will finally get to meet their cousin. We are so excited and can't think of a better way to wile away the days.