Out with the Old...in with the New

I have spent considerable time this week getting Amelia's room under control. She is kind of in limbo between nursery, hospital room and toddler room. A huge problem I have been having with her is that we have kept most of her toys downstairs, as that is where we spend most of our time. However, there are too many and it overwhelming. She does not really play with them purposefully. She scatters them about, stomps on them, throws them. She could do that with pots, pans, boxes, and tupperware. So I took everything upstairs and threw them into bins in a little pass through area upstairs adjacent to her bedroom. They are not organized, but they are tidy. I plan to organize this Tuesday when she goes to school. My idea is to grab a couple of bins of toys for her to play with in the morning when I get her out of bed and those will be what she will play with for the day. And easier clean up at the end of the day.

Her clothes closet was out of control. We have been blessed with several friends and family members that have given her a continuous stream of hand me downs and gifts, as well as some purchases of our own and the closet was bursting. So I cleaned out 4 bags of clothing and donated them to charity last week. I kept the best stuff to pass down to her baby girl cousins.

So on the developmental front ---

Walking: She is getting increasingly more stable with her walking. She is tripping and stumbling less. Now that the weather is nicer we are walking around the neighborhood with more regularity. I even handed her Asta's leash yesterday to see what would happen. He lunged forward and she dropped the leash and did not fall. She was giggling like crazy. Her OT has really been working on strengthening her hips which helps her stability. A typical session is an obstacle course of crawling over bean bags, pillows, an intertube, and through a tunnel. (She also is doing vestibular, fine motor and tactile sensory integration things in between the more physically taxing exercises to work on other things and give her a bit of a breathing break. The OT is fabulous and I am so, so pleased to have found her).

She had her visual therapist and a mobility specialist go to her school to check out the classroom and talk to her teacher about some of her visual and coordination issues. She seems to be noticing curbs, doorway transitions, etc. more and lifting her feet and stepping up or down so she won't fall. She still seems to want to walk over toys that are on the floor, so that is another reason why I am trying to keep things more clutter free around the house. We are still patching her two hours a day.

Socialization: The teacher reports that she is starting to engage with the children in the class more. She used to just kind of stand to the side and watch them play, but I think she is becoming more comfortable being in the middle of the action. She definitely wanted to be in the middle of the action with all the kids when we were visiting Aunt Marian's house in Louisiana.

Vocalization: On the positive side, I believe that Amelia understands a great deal, so her receptive language is very good. I can tell her to pick things up and hands them to me. We are working on putting things in the trash and putting our toys away by me telling her to do so. She spits out wads of paper when I instruct her to, I tell her to get out of a room and she leaves, she can close a door when I tell her to.

However, I am getting a little concerned about Amelia's lack of expressive speech, i.e. her ability to imitate sounds consistently, her lack of gestures as a substitution for language, and the increasing of what I call "squawking" sounds when she gets frustrated which is about 1 second after she encounters any difficulties. For instance she has a little pink car she can ride in. She likes to push it around the house, but once she pushes it against a wall, she immediately starts hollering. I would love for her to work it out, but I admit, I come running over to save her because I can't stand hearing this sound coming out of her. It is a bit like listening to a hen lay an egg. Just.can't.take.it.

I have starting doing some Internet research and reading a book called Late Talkers: What to Do if Your Child Isn't Talking Yet. I am interested in some anecdotal evidence that fish oil supplements can increase speech function. Reports make it sound like a miracle and after 1-3 weeks there is bursts of verbal activity never know before. I am skeptical, but nothing ventured, nothing gained. It is all natural and so if there no change in her speech, I won't feel bad about giving her the supplement.

We have been mostly concentrating on eating with her speech language pathologist. She seems to think Amelia's speech problems are because she has been concentrating on other areas for so long and I agree that may be part of it, but there is also no denying that she lacks tone in her mouth which is important in the formation of words. Learning to chew and use her tongue should help that. Another possibility is that due to her brain bleed and loss of brain matter due to being premature, her brain is unable to tell her mouth how to form words. This is childhood apraxia of speech and takes special speech therapy to help correct. I do not know if this is what she has, but I am starting to have my suspicions. It seems everyone wants to take the wait and see approach, but what if we wait and see and then --- oops we should have started doing something a year ago now that we know? I am not a wait and see kind of girl.

Sleeping: She is napping on her mat at school. She will not nap in her big girl bed at home and getting her to stay in it at night is also a challenge. So she is still in her crib. Next...

Potty training: I have started taking her in the bathroom with me while I go. I tell her to listen and tell her mommy is "tinkling." I let her try to flush the toilet and she is starting to enjoy watching the water swirl around and go down. Then we wash our hands together. It's a start right?

Eating: Hit or miss. We are holding off on her morning feed and trying to feed her things like fried egg, bits of toast, spoon feeding yogurt, and this morning I tried giving her a strip of turkey bacon. Then we give her a cup of her pediasure and then whatever is left over we dump in the bag to be pump fed to her around 11:00. This works great on non-school days, but we can't do it on the days she goes to school because we don't make the school fool around with pump feeds, so we have to send to school on a full tummy before she gets there at 9:00. I pack her two snack bags of snacks for school every Tuesday and Thursday morning. Every Tuesday and Thursday afternoon I bring her snacks home uneaten.

Fun: We went to a Christmas market yesterday at the Second Baptist Church here in town. They had ballet dancers as entertainment, as well as shopping. Amelia loved it, but unfortunately she is little Miss Independent and did not want to be corralled into her stroller and she did not want to hold our hand while walking. So basically she had a big a huge hissy fit that included lots of squawking.

We visited with Miss Elizabeth yesterday and walked around outside in the back yard without holding hands. She was able to walk from the walkway through the grass to her climber without falling at all. She is really getting the hang of climbing through the tunnel and sliding on the slide.

We also went over to Uncle Neighbor Cuz Billy's house and visited with him and Syl while Amelia ran around, tried pushing buttons on the remote, throwing pebbles, tossing coasters, attempting to climb up on the ottoman and eat toilet paper in the guest bathroom. She ate 5 Doritos while she was there. There must be a Dorito gene. If she starts chugging Dr. Pepper we will know that food preferences are genetic for sure.

Breathing: She has a pulmonology appointment this month. I was told at her last appointment that she will probably be weaned off her oxygen. Not sure how this process will go or how long it will take, but I am hopeful that by Christmas she will be oxygen free. What a wonderful gift to have our child finally be 100% breathing on her own.