Plans for 2019 (Tobias's Journey)

Happy New Year Everyone!!!

2018 was an exciting year, but 2019 is going to be even more amazing.  We have a lot of plans for Tobias throughout this year.

First up, at the end of January, we are driving to Phoenix to meet other families who have children with Moebius.  From what I have heard, the other childrens' ages range from 18 months old to 14 years old.  Hopefully their own experiences will help us somewhat plan for Tobias's future. I am looking forward to meeting everyonem, but I am also really nervous.  

Throughout this year we will continue to see our Occupational Therapist twice a month.  As well as, our Physical Therapist once a week.  I am excited to continue to work with them.  The main thing we are currently working on is his protection skills. When Tobias falls, he doesn't have the instinct to put his arm out and catch himself. That was not extremely concerning to me while he was sitting, but now that he is starting to stand I am definitely more aware of him harming himself.  While he is standing, he will throw himself back instead of sitting down.  

Right now we are on a break from his feeding and speech therapist, but we will continue with her weekly appointments in March or April.  I am going to keep working with him on his feeding and speech, so that we will have new updates for her.  I am also hoping Tobias will know at least one sign to show her.  We are currently working on 5 signs for him to do because we want him to feel comfortable doing sign language in case he struggles to speak.  A goal for me is to be more persistent with those 5 sings.  Honestly, I only do one of them and its only during feeding time. So I know there is more I could be doing on my end.  

His surgeries on his hand were pushed back, so now that is something we are planning to get done this year.  As for when?... I am not entirely sure.  When I talked to our doctor's office at the end of last year, they said we will go up there in December for one last consultation.  Followed by the actual surgeries in January (now) and April.  I have not heard anything from them since that phone call, so I am guessing surgery isn't happening this month.  I have not called to find out what is going on because honestly I am not in a rush to get these surgeries done and it seems like they aren't either.  From what I understood when we saw the surgeon in September, she made it sound like the bigger the hand, the easier it will be for her to operate.  So I am going to sit back and wait on them to call us because I trust she knows what she is doing.  

In March, we are going back to Phoenix Children's hospital to recheck his feet.  I am concerned about his left foot, and have been for some time now.  It is a little curved in, so I am afraid he needs to be recasted.  Every time I brought this up to his old orthopedic doctor, he said that is common and it will straighten out when he starts walking.  When the new doctor looked at his feet, he also didn't seemed concerned, so we will see what he says in March.  Also at that appointment, Tobias is suppose to be cleared for going down to 12 hour wear.  We our currently dealing with a blister (or at least I think it is) on his foot.  Its has been a couple days and it hasn't gotten worse or better,  If it forms into an actual open blister or wound, we will have to keep his brace and bar off until it heals and we do not want that!  If his brace and bar are off for too long, then he has a good chance for relapse which means his feet will curve back inward.  And if that happens, he'd have to be recasted.  So fingers crossed this blister goes away quickly. 

Lastly, later on in the year, we are going back to his dentist to take another look at his teeth and possibly put sealants on them to help prevent any tooth decay.  The dentist said we need to make sure he is old enough to stay extremely still when the sealants get put on.  If he moves and the sealant isn't tight, then that could cause more harm to the teeth.  He will be 1 1/2 years old when that appointment happens, so I have a feeling he will be all over the place at that time. 

Thank you for reading!  I look forward to updating everyone on our Moebius meeting happening in just a short few weeks!