The "W" Word

This week we had some more therapy, a doctor appointment, and some more therapy.

At physical therapy on Tuesday, it was a disaster! Brynlee wanted nothing to do with therapy this week. Top it off with her two sisters who didn't want to listen or obey at therapy, and it was a not-so-good day. I swear that I will not be taking Brynlee's sisters with us ever again to PT if I have any choice in the matter. Anyway, we did get Brynlee's ankle orthoses this week. These are supposed to help support her ankles and feet for standing.

Here is a picture with her orthoses, and she is even smiling. I was tempted to get some hot pink straps, but I decided to change it up and go with the purple.

I haven't been able to work too much with Brynlee in her braces because I had to go find some shoes to fit over them, but she seems to tolerate wearing them, so that is a good thing as eventually she will be wearing them all of the time.

Wednesday Brynlee had her appointment with her physical medicine and rehabilitation doctor, Dr. Lewelt. This was only the second time that we have met with Dr. Lewelt, but I really liked her and her approach to rehabilitating Brynlee. I was sad to learn that she is leaving PCMC at the end of the month to go to California, so we will be switched over to one of the other doctors when we go back in three months. Dr. L believes in treating the patient and not the scans, and I have really appreciated her approach. I think this is why I had so much dislike for the neurologists as they only seemed to want to treat based on the scans. Hopefully the doctor that we will be seeing in the future holds this same belief too.

Dr. L had a lot of positive things to say about Brynlee again and was happy with her improvement during the last three months; however, we had reality smack us in the face when she brought up the topic of getting Brynlee into a wheelchair. I personally had been trying to avoid this topic and not think about it and had hoped that we could avoid it for a few more years, but it appears it is time to face it. Dr. L explained to me that we need to get a wheelchair so "Brynlee can be active in exploring her surroundings in the home and in the community. It is very important for Brynlee to feel independent in her explorations so that she enjoys her childhood to the best of her abilities." Dr. L is not giving up on the hope that Brynlee will someday be able to walk and we are still working toward that goal, but Brynlee also needs to be able to be indepently mobile somehow, otherwise we could be hurting her emotionally, socially, and developmentally.

I explained to Dr. L that I wasn't sure how much Brynlee would benefit from a wheelchair in our home as we have a split-level home and she cannot go from her room to the kitchen to the family room without stairs being in the way. She asked about daycare or preschool or church, and I did admit that church is probably going to be the place where she will need one. I had been worried about sending her to nursery in a couple of months for many reasons, and this was one of the reasons why. Anyway, I did decide to put off the referral to the Wheelchair Shop for a little bit so we can make some decisions about how we are going to approach this. Brynlee can explore by pulling herself around our house a little bit, so I don't really see the benefit of a wheelchair in the home right now, and I don't really see us using one in the home at this point, but there are situations coming in the not-so-distant future where a wheelchair is probably going to be needed. We also have a lot to consider with our house and what we should do about it. We have a couple of years, I think, until it is going to be a major issue for Brynlee, but the value of our house didn't exactly go up after we bought it, and so selling is not exactly in the cards either. This is one of those times when I wish I could see into the future to know what the best path would be for us to take.

And finally we also had horse therapy on Thursday, which I was told Brynlee worked really hard this week. I think it has helped that I haven't had to sidewalk with her the last couple of weeks. There is a volunteer who has been sidewalking with her that she has taken to who perhaps has hair that looks like her grandpa's. She likes to chatter to him and give him her blanket, which she doesn't give her blanket to just anyone. I think he (the volunteer) has been coming just for her.

We also got Brynlee's next set of scans scheduled. I can't believe that in just over one short month we will be going through all of that fun again. It seems like we just had scans.  Oh the fun things we get to do!