Busy week...as always

If this post doesn't make any sense it's because Molly has been keeping me up all hours of the night. I'm like an infant. I require a good 8 hours of sleep to function properly, which hasn't happened in about 3 years.

We had early intervention on Monday. Monday is usally speech and music therapy. Her appointment was at 11:45 and they ask that you give them a 15 minute grace period. This time is very tough to begin with. It's close to lunch time and nap time. Especially if she gets up at 7am like she has been doing. Well, they didn't get here until 12:15 without a phone call or appology. I was not very happy. I'm not a big fan of the speech woman to begin with. She makes me feel like I'm not doing something right as a parent, not that she would have any experience parenting a kid like Molly. I feel like she's always judging me even though her job is not to judge me as a parent but to help Molly with communication. I didn't want to get rid of her because I think that's where Molly needs the most help. I've been going back and forth about her for awhile now because she likes to do things her way and there's more than one way to do something...especially if the way you're doing it isn't working. We had our session and they left at 1:15 after Molly had her meltdown. She was tired and hungry. It threw off her entire day because they were late. She didn't eat well because she was so tired. With ever fit she pitched that day I got more annoyed with the speech therapist. I was going to see the feeding/physical therapist on Thursday so I gave myself a few days to make a decision.

We had an appointment on Wednesday with Endocrinology in Boston. Her appointment was at 10:30 which meant we had to leave the house at 8 to allow for traffic. I had to wake Molly up at 6:30. It takes longer to get her ready than it does to get myself ready. Theere wasn't much traffic and we made it into Boston in about an hour. I was told to be there 15 minutes early in case they could take us early. I don't know when I've ever been to a doctors appointment and they've taken me early. Well, this day was no different...a half hour later than our appointment we were called in. Molly weighed in at 10.91kg and I think 81cm (around 24 lbs, 9 oz and I think like 31"). This appointment is usually quick. She repeats the same thing every time "I think her thyroid disease is because she was so sick and it's not congenital". "I would like to try to take her off of the thyroid medicine but I think we should wait until she's 3 because this is the most critical time for brain development". Of course everyone keeps a close eye on her height and weight. According to the chart her height didn't change much since we were there 4 months ago. It's so hard to get an accurate height and weight because she's always so mad when they weigh and measure her. So I'm going to start doing it at home to make sure she is growing. She's tiny but she's proportionate. She's probably the height of an 18 month old. Her shoe size is also small. She is in a 3 right now (infant) but so close to a 4. It's very hard to find cute shoes that small but I manage :) I can tell that she's getting longer from her clothes which is also difficult to buy. She can wear a size 12 months pants for her waist but 18 months for length but a 24 month for her top or a dress. See, petite! I wish I had that problem! She is due to have her thyroid levels checked anyway so we added that to our list of things to do this week. She told us she would see us back in 6 months!!!! I don't think we've been able to go 6 months in between any appointment. Very exciting!

After we came back from the appointment we learned of a fellow Heterotaxy baby that had passed away suddenly. Even though we almost never meet these families we have a special connection. It's hard not to fall in love with a baby that fights so hard and still manages to flash a smile and try to make you think that there is nothing wrong with them. It always hits so close to home and devestates us because we know that could've been us at any point. We are so lucky to have Molly with us today and there isn't a day that goes by that we aren't grateful for all of the work, prayers and love that have been put into allowing our family to be possible. If you think you're having a bad day, know that it could be so much worse.

Anytime we have a doctors appointment if effects Molly's sleeping. She wakes up crying in the middle of the night. I can't calm her down and it's almost like she's afraid back to sleep. Wednesday and Thursday night was no different. She was up from 2-4a on Wednesday and 12:30-3a on Thursday. This can go on anywhere from a few days up to a week. I hate that she is so scared that it wakes her up. Hopefully as she gets older it won't effect her this way anymore. One can hope.

Yesterday we had Early Intervention. This time it was feeding and physical therapy. I spoke to her about my concerns of the speech therapist and we decided that it's time to move on to a new therapist. I really hesitated because it takes Molly so long to get used to a new person but we still have almost a year to go so I think it's the right choice. We also discussed how much protein and calories Molly should be getting in the course of the day. She is getting the proper amount of protein but Jay and I calculated how many calories she gets and she is on the low end of the proper amount. So today she had to go for labs. On the way back we stopped at McDonalds and she had her very first happy meal. She ate just about a whole cheeseburger (without the bun) and some fries. I'm pretty sure she got her calories in lunch alone :) Last night she had fish and fries for dinner, definitely one of her favorite meals.

She continues to amaze us every day with something new. She acts more and more like a little girl everyday and we just love her to pieces.