I am going to be honest, there are times I question whether or not I am doing the right things for my daughter, but what mom doesn't? It can be difficult to be questioned by well meaning people every day about whether or not your child is crawling or walking or talking yet, or what they are eating. I know they are just curious and do not mean anything by it, but it only makes you question yourself more when you have to continuously answer "no, she isn't doing that yet" to every question they ask.
Enter our Pediatrician, who almost brought me to tears today (in a good way). As we were discussing Madelyn's progress at her 12 month well check she emphasized that the more time that goes on, the more they (her physicians) believe Madelyn's delays are not related to her Optic Nerve Hypoplasia. My first thought was to be devastated that we had no answers, as I was sure the two things had to be related. The Pediatrician explained that it was a good sign that none of the team of specialists can pin point a diagnosis. She said low muscle tone and global developmental delays have a better prognosis if not associated with any particular syndrome. Often when delays are related to a specific syndrome, the child will only develop to a certain point, and then stop making progress. She is very encouraged by the progress Maddy is making and is happy that we will be taking the therapy up a notch. She believes it will be a lot of work the first few years of Maddy's life, but she thinks if she keeps making progress like she has been, the outcome will be positive. So in this case, no news is good news, and for the first time, I was happy to not have any answers.
We also had Madelyn's ear checked again, but she still has fluid in them related to her recent ear infection. They plan to re-check her hearing in 3 months to determine whether or not she may need a referral to an ENT, but the pediatrician did not seem very concerned.
We also saw Maddy's Pedatric Ophthalmologist this week. She agrees with our pediatrician that the delays are not related to her vision or her ONH and thought it might be a good idea to refer us to a geneticist. It can take as long as 6 months to a year to get in once referred so she wanted to get the ball rolling for us in case we decide it is something we want done in the near future. No sign of glaucoma and no change in her prescription (yay for not having to spend money on yet another contact or pair of glasses!) She did notice Maddy's eye is wandering out more than usual, which may mean we need to increase her eye patching time if it does not improve. But all in all, things went well.
And finally, when we got home today, I had a letter waiting in the mail saying our insurance has finally approved Maddy's therapy and we can schedule her PT, OT and feeding therapy tomorrow! I am a little nervous about fitting it all in to our already crazy schedule, but we are so excited to get started!
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