Itty Bitty Baby Steps

I want to start by saying I'm so grateful that Molly is with us and is healthy. I never forget all that she has been through and how close we were to losing her. I know that things easily could have gone the other way. I try to remember this when I'm frustrated with her lack of sleeping or when she fights me to eat something she doesn't want to eat but it's not always easy when I'm exhausted. I get frustrated when people take things for granted and when they complain because they had to take their kid to the emergency room for a cut. It's not their fault and I'd probably be the same way if I hadn't lived this life. I just want to scream at them to be grateful that they only need stitches on their head and not staples down their chest!

I've been in a funk since we met with the school system. She has always been so good at making us forget that she's not like every other 2 1/2 year old. Sure she doesn't walk or talk but she looks so perfect. I don't know why I'm having such a hard time with all of this. I just want her to be like every other kid her age and I'm sure anyone would feel that way. But the reality is she is not and hopefully some day she will be. If she isn't we will love her just the same. Even if she doesn't catch up I really hope she learns to sleep!!!!!!!!!!!!

I was already feeling "blah" about her developmental delays and we walked into the Early Intervention center yesterday and they said they were going to do her assessment even though it's not due until next month. I told them it wasn't a good idea because Molly was up from 2:45am-5:30 and then had to get up at 7pm to go to EI. They said they would do what they could. Well, she wasn't cooperative at all. They wanted her to stack blocks and she flung them at the lady. Then they wanted her to do a 3 piece puzzle. She did it no problem but then they flipped it upside down and wanted her to do it again and she flung the puzzle pieces at the lady. They scored her based on what she would do and wouldn't score her on what they have seen her do. We had EI today and I told her how I wasn't happy with yesterdays results because I knew she could do more than she did yesterday so we repeated some of the sections. She stacked the blocks just fine. She picked up her snack with the pincer grasp, put a tiny object in a cup and a few other things. The only thing we didn't get to do was speech and we will do that on Tuesday when we meet with the speech therapist. I'm dreading the results of that portion the most. Luckily she loves the speech therapist so she should be cooperative. Here are the results I have so far:

Fine Motor she went from 11 months to 19 months which is a great gain and I'm happy with the progress.

Gross Motor she only went from 9 months to 10 months and that is because she doesn't walk independently.

Self Care is made up of 3 parts but they average 15 months. The three parts are feeding which is 11 months because she doesn't self feed with a spoon and won't bite a piece of food off. It has to be cut up or broken up for her. Toileting is 15 months and Dressing & Hygiene is 19 months.

Social she went from 16 months to 27 months which is the greatest gain. EI said that she never would've thought this was the category she made the most progress in because when they first met her she hated everyone and could cry the entire time they were here. She also said that Molly does things on her own time and when she's ready and if she doesn't want to do it she lets us know. That's funny because I used to hear that all the time when she was in the hospital.

I asked what we need to work on to improve her scores for each section and we have a lot of work to do but I'm confident that she can do it. We are going to be doubling up on her therapies in May and we will both be very busy but it will be worth it to help her hit her milestones and make the progress that she needs to make. Not to mention she is so frickin heavy. I'm going to break my back carrying her around so she really needs to get this whole walking thing under control.

She has been on Melatonin for a week. It has helped her to fall asleep but not to stay asleep. I really think she likes to torture me and see how far she can push me. Once she sees tears in my eyes and flames shooting out of my ears she knows to back off for a bit. We also started giving her all of her meds by mouth. We haven't used her g tube in 2 days. So before bed she is taking her Flintstone Vitamin, 1/2 a baby asprin, Amoxicillan, Levothyroxine (thyroid medicine) and Melatonin all by mouth and it's not a fight at all. So we have 2 days down and 5 months, 28 days to go before the tube can come out :) Of course once the 6 months rolls around we'll probably say "why don't we wait another 6 months just to be sure?".

Despite the scores of the assessment we know the progress that she has made and how hard she works every day to keep going forward and making us so proud. She will always be the most important thing in our lives and together we will get her to where she needs to be...apparently at her pace.

Stay warm!
Kerry