Not fair!

When other kids are attending preschool or going on play dates or going to the park or attending dance school or a baseball game or just being a kid, what is Molly doing? Well, when she doesn't have Early Intervention (which she has 3 times a week) she has a doctors appointment or some type of assessment. This week she had both. Just doesn't seem fair but that her life. Last week we had cardiology. This week it was her 2 year wellness visit. Of course she got mad when they weighed her. She weighed in at 22 lbs 14 oz which wasn't a surprise since she was just weighed last week. I finally calmed her down only for her to get mad again when she was vaccinated. Both of the vaccines that she received usually aren't given at this age but because of her multiple spleens we were able to get these vaccines approved for her. We spoke about everything from the LADDS procedure to cardiology, Early Intervention, developmental delays, Endocrine. Nothing that I really enjoy talking about. I don't need to be constantly reminded of her developmental delays. Early Intervention had suggested that Molly goes to see a physiatrist. I was not for it at all but I said I would bring it up to the pediatrician. The reason EI wanted her to see a physiatrist is because Molly's ankle turns over once in awhile when she's standing. I only have one baby but for a kid that spent all of that time in the hospital and is learning to stand and walk, I would think it might be normal. It's not all of the time. So the pediatrician agreed with me. She doesn't think Molly needs to see a physiatrist. She said if in 6 months she's not making progress with standing and walking then we'll talk about seeing an orthopedic for braces. The good news is we already have an orthopedic doctor since they fractured her femur when we were in the hospital. I also asked her about going to an outpatient rehab facility. Early Intervention just isn't cutting it. I just think she needs something more. So we are going to explore that in the near future. They get hung up on the fact that Molly is 2 and isn't walking or talking. They need to stop thinking of her as a 2 year old. She was paralyzed and sedated for the majority of her first year of life. She didn't start living until she came home and I've told them that a million times. Back to the Pediatrician...she was very happy with every aspect of Molly, which is a first for this doctor. That night Molly didn't sleep. Every single time she has a string of doctors appointments she has trouble sleeping at night. That coupled with the vaccines made for a very long night. She woke up the next morning crabby as can be. I gave her some Tylenol and she was better as the day went on and she was better today. Early Intervention thought it was a good idea for Molly to have a communication assessment. What they were hoping to get out of this was some input from communication experts. How can we help Molly along? Are there other tools we should be using? Are there apps for her ipad? I was afraid she wasn't going to cooperate because she was in a strange setting but she did great. She was little miss Chatty Cathy. She did everything they asked of her. She sat upright in a wooden seat for over 2 hours. She played with their toys, she made choices, etc. It was a very long morning. I don't even know what we got out of it. The highlight of the visit was that Early Intervention said that they have never seen her interact the way she did. They think it was the wooden chair she was sitting in and the bright room and asked if I could do anything to brighten up my living room. Yeah, I'll get right on that. The communication specialists said that Molly was the most social kid they have seen in a long time. And of course they commented on her beautiful hair and cute shoes. Once we were finished she took me on a tour of the school. I'm sure it's a great school but it would never be for Molly. It's for kids with very complex medical needs, kids that will never be able to take care of themselves. I don't know why she was showing this school me to. I left the place feeling kind of down about things. It's not fair that this is Molly's life. Why can't she just have a normal life? There are other kids that have spent time in the hospital and they are walking, etc. Why does she have to struggle? But at the same time, she's having the time of her life and I know that's what is most important. I really try to stay positive but every once in awhile these reminders get to me. I'll feel better when she wakes up in the morning (and by morning I mean after 6am) and I go in to get her and she greets me with her version of hi "HA" in the cutest high pitch voice.