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A couple weeks ago I went downtown to Blank to meet with Bridget’s neurologist. Fortunately, she has met other children with Sanfilippo in her line of work, so she is aware of her syndrome. I trust what she has to say and feel really comfortable asking her my questions.

Essentially all of your thoughts and prayers helped because I was told that there wasn’t any major or very recent changes to the loss of volume in her brain. She is currently labeled as having “moderate atrophy of the brain”. That was encouraging to hear, but still disheartening to see all of the images knowing that the black spaces should contain brain mass. My next question was about possible seizure activity. I shared videos with her from home as well as school. Because she wasn’t in the presence of Bridget during these episodes she couldn’t really speak much on them, except to say that if they are absence seizures (a big possibility) then we won’t move forward with anything yet.

Essentially, she stated that Bridget is currently on a lot of medications...and has other medicines that we use “as needed” when she is having more difficult days. If we were to move forward now we would have to do an overnight sleep study attached to a bunch of cords and monitors and Bridget doesn’t do well sleeping anywhere other than her own bed (we literally don’t go ANYWHERE). Otherwise she suggested doing a 24 hour monitor helmet which again, there is no way Bridget would tolerate that to get accurate readings. If we were having more of the drop seizures or longer duration episodes we would have considered those things. 

When I asked her what the next step was, she said to continue monitoring Bridget and noting changes in the seizure activity.  Her one-on-one has been great about documenting while at school, and we keep track at home. Her doctor basically said to start watching for signs of intense headaches/migraines, vomiting, or sleeping for extensive hours out of the day which could identify hydrocephalus which is commonly found in children with Sanfilippo. 

With all of the medications she is on now, I am glad we are not adding another one just yet. I am also glad to know there are options if and when it becomes time for that. I also inquired about continuing the yearly brain MRI’s and she said that we could continue them if I wanted to, but anesthesia is not good for Sanfilippo children, which I was aware of.  We also discussed if seeing the scans from year to year would positively affect our day to day life. I hadn’t actually thought of that before. It would only being negativity to our household when we are already aware of what the inevitable is. 

So I guess for now we just need to be happy that no major changes have happened recently, and to take comfort in knowing that Bridget is happy and enjoying her time back at her favorite place...school. 

I was just telling a friend how I feel like parenting Bridget could easily be a full time job on its own (clearly motherhood is a full time job, but special needs momming is a whole new ballgame). Today alone I answered 3 emails, traveled to complete paperwork for her with a newborn, answered 2 phone calls, and scheduled 1 appointment and I’m not even back to my day job yet! I’m a little terrified of jumping back into that role especially this year.

Sometimes I wonder how much is too much? I know we all have a lot on our plates...but I question if I have bitten off more than I can chew. Lately I have felt less than capable of completing everything on my daily to-do list. Does every mom feel that way? Am I the only one? I really believe moms deserve way more credit for the infinite amount of decisions and tasks we complete each day. Once again, that’s why I’m so grateful for Bridget’s team working alongside us to help make every day a great one for her...even if I do feel like a mediocre mom at the end of some days. At least I know that in this moment, at this point in her life, she is happy.