The appointment lasted 2 hours. Mackenzie was a good sport. We were stuck in a tiny room with only the few toys we brought with us. The worst part was that she wanted to get down quite often and crawl and pull up on everything- which isn't a good thing when you are in a room with expensive medical equipment! She only cried near the end when we had to hold her down to put drops in her eyes and then hold her down after so the doctor could look into her eyes. I have mixed feelings from the appointment. It was better than the other ones we have had. The doctor was more knowledgeable with OMA than other doctors we have seen. He had no concerns about her vision or her head thrusts. He told us what we have heard from others - that the head thrusts should decrease as she gets older. However, when we asked him about the mobility and speech delays, he said that the delays have nothing to do with OMA. I have heard other parents of children with OMA say that they have encountered doctors who say the same however they, like myself, disagree. There are some children with OMA who just have the head thrusts however the majority of children with OMA do have difficulties with balance, coordination, and some do have speech and mobility delays. My question is this- if Mackenzie's mobility and speech delay plus her lack of balance have nothing to do with the OMA, then what is going on in that area? So we left the appointment with frustration of even more uncertainty since he couldn't give any input with her delays. The Neuro-Opthamologist told us that he sees no need for Mackenzie to come back for a follow-up until she starts school (unless we have concerns). I do like hearing a doctor tell me that he doesn't want to see her for a few years. That means he doesn't have huge concerns (with the OMA/head thrusts) however the first Neuro-Opthamologist we saw told us to have yearly check-ups. So I'm unsure what we will do with that.
After the appointment, we went by McDonald's and treated Mackenzie to a happy meal and then went to Chipotle. Mackenzie stole my guacamole from me and used it to dip her chicken and fries in.:)
Mackenzie had her first speech therapy session today. She will have speech therapy every other week. I was pleased with how well it went and look forward to working with this therapist. By the end of the hour session, Mackenzie was signing "more" and "please" quite often and then signed "I love you" to the therapist as she was leaving. I started sign language with Mackenzie when she began eating solids (around 6 months old) before we knew of her diagnosis and am glad that I did. She has signed "more" and "please" for at least a year however I haven't used the signs as she's gotten older. The therapist encouraged me to use signs as often as I can to help alleviate frustrations from Mackenzie not being able to form her words. Plus the therapist said that it is obvious that Mackenzie is a visual learner so this will help her with communication.
Like I briefly stated in the first portion of the post- both BJ and I are frustrated with not knowing all that is going on with Mackenzie. I have several times where I wonder if I am doing all I can to help Mackenzie and wonder if we are seeing the correct doctors. Someone recently mentioned that acceptance is a huge thing when it comes to having a child with any type of disorder/delay. I fully agree. I feel like I have accepted who Mackenzie is (who couldn't?! Have I mentioned how wonderful she is?!:)) - her accomplishments and the difficulties she's facing with the OMA/delays. The part that I haven't accepted (and that I don't think I will ever be able to accept) is the uncertainty that we have with what's going on along with the frustrations we get when we see doctors and they can't tell us anything more than what we've already learned from doing our own research. I just want to make sure she is healthy and happy. I do know for a fact that she is quite happy.
I will end with posting some pictures from the past month plus a few videos. The first one is from Christmas (Thanks to my brother for taking this cute picture).
This is from earlier in the month when we went to the park.
The other week I told Mackenzie to go put her shoes on if she wanted to go outside. This is what she ended up doing (all on her own:)).
This past week Mackenzie visited with 2 of her cousins and we all went to Chuck E Cheese. Mackenzie enjoyed her first visit. She spent most of the time on this car.:)
The following videos are from the past 2 weeks. Mackenzie is doing much better with her toy walker however there are times where she will randomly fall straight back or to the side. But overall, she's doing well with it! She also learned how to use the couch (or any other stationary item) to lean against and bend up and down picking things up. She is quite proud of herself. :) And the one with Big Bird is too cute not to post. :)
