Maelee is doing good, we have the good days and the bad days but overall she is precious! :) She has been a trooper with all her appointments and therapies and still finds a way to smile during the day. Her personality is so funny, she is loving one minute and pretends to kick the next. I am just proud she can raise one leg up and not fall over every time. :)
Maelee had her ABR scheduled for last week to check her hearing and figure out a plan....well it was completely unsuccessful and resulted in a horrible sensory meltdown. I felt like we spent 2 hours torturing her just to be told they were going to do it under anesthesia on Sept. 4th! So we still have no answers to her hearing but it is becoming more of a concern.
She also will be going to the pediatric eye specialist next Friday to figure out if anything is going on with her vision. She constantly squints the right eye, her depth perception is terrible, and if she could sit inside the television to watch it she would. Her left eye sometimes does the floating in and out which they have been watching but we will see what is going on. So no answers to her vision yet.
She was seen by a Pulmonologist about 4 weeks ago to discuss her lungs and then schedule an appointment with the partner allergist. She is now on an inhaler two times a day....... completely impossible but we are trying everyday! :) Her lungs are not matured enough and after going through her records he feels she has BPD (Bronchopulmonary Dysplasia) and it has caused her lungs to take longer developing. So we are using the inhaler to help the best we can so maybe this winter she won't live with a nebulizer attached to her. He feels she will have the diagnosis of asthma but doesn't want to give her that yet....and we are just find waiting for that.
Maelee will be getting AFO's in the coming weeks and has already been casted for them. Her knee hyperextension has not stopped and this will help as well as keeping her off her toes. Of course we picked out cute colors and made sure they would be stylish. I would be lying if I said I wasn't worried that others will notice them more....they are not something you can hide.....
A big concern right now is Maelee is experiencing a speech regression coupled with a lot of meltdowns and behaviors. Her therapist are concerned as well but right now we wait to see what happens. The meltdowns have become so much the past few days that it is hard to even take Maelee out to a store or restaurant without her being overstimulated....it completely breaks my heart. There is nothing you can do to console her and as a Mother that is the hardest part. She has a wonderful team of doctors and therapists but I can't help feeling we should be looking elsewhere for assistance in this matter. Lee and I both know in our hearts what is going on.....but to find someone else who does is never an easy task.
So there is a quick update but the biggest thing is in less than 2 weeks she will be 2!!!!!!! I can't even believe how much she has grown! Our sweet Peanut is growing up way to fast!
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