Will is his normal laid back, lovable self.
It's been another busy week. Lindy had 5 appointments this week. Makes the weeks fly by when you are always on the go.
Monday started off with a follow-up physical therapy visit. She had a great appointment. She was in a great mood and was showing off with all her movement. 5 weeks ago when the PT evaluated her she was scoring in the below average developmental range. On Monday she actually scored in the average range!! The PT was so impressed with all her movement and her muscles. 5 weeks ago her thumbs and hamstrings were a bit tight. With lots of stretching over the last few weeks they felt pretty good and now her left ankle feels a little tight. We were very happy to get this good bit of news.
Wednesday brought two appointments, the eye doctor and an echocardiogram. We were real anxious about the eye doctor. We were more prepared this time for the possibility of bad news. The appointment ended up going about as expected. She has severe vision loss, but it seems that she does have some vision. He said her left eye is -8.00 and her right eye is -10.00. This means she is VERY nearsighted. Just to compare, my vision is -3.50 and -4.25. We have both talked to some friends who are -7.00. Her left isn't that much worse. She should have some vision assuming everything else is working correctly. We will have to wait and see if she has the neurological equipment to allow the images to be processed by her brain. There is reason to be worried about this because of her hydrocephalus. We have another appointment in 6 weeks and we will probably be talking about putting her in glasses. Can you imagine my little Lindy in glasses?
Does anyone out there or do you know someone with worse vision that -8.00 and -10.00 and they can see okay with glasses or contacts? We're trying to to get some frames of reference to see what we are really dealing with.
Lindy also had an echocardiogram to check on her heart. They are checking to make sure there isn't extra pressure on the heart that could be affecting her lungs and her need for oxygen. We haven't heard any results from that yet.
Today we had the home health nurse come check on her and weigh her. She was up to 9 pounds 8 ounces today! She hadn't gained much last week so I was happy to see a good weight gain this week. Finally this afternoon we had a follow-up with the ENT (ear, nose, and throat) doctor. We discussed the results of her swallow study and he was able to look in her ears. He got a good look at her eardrums today and said he did not see fluid behind her ears. I wish he had seen some fluid. If there was fluid that could have been the cause of her hearing loss and there are things to do to fix that problem. Unfortunately there was no fluid so we are dealing with something more serious in regards to her hearing.
We are done with appointments for this week and thank goodness we only have 1 appointment next week. Drew has been staying home with Will while the girls go to the appointments. Drew's office is at our house so he is able to come inside and watch Will and do work inside while he sleeps. I don't know what we would do if we did not have this arrangement. We are fortunate for Drew's flexible schedule that allows me to just take one baby into an appointment instead of having to take both!!
We hope everyone had a lovely Valentines Day. The "Little Flirt" had a couple offers to be his Valentine. A NICU friend, Allison, offered (okay, her Mom offered her up!) to be his Valentine. We also got a call today from one of our favorite NICU nurses, Sherri, inquiring to see if the spot was still open! The little man is already fighting off the women! I didn't ask for Valentines for Lindy because she's our little girl. Daddy won't let her have any Valentines until she is 18 years old :) I don't think that is fair though. So maybe another NICU friend, Noah, could be Lindy's Valentine. What do you say Cheryl, can the shunt babies be Valentines?