I can’t believe how long it’s been since I’ve sat down to update this blog, it’s kind of embarrassing. Of course, I also had a very interesting fall season as I got a taste of what life could be like if I was a working mom, and I have to say it was pretty sweet. And then that makes me ask, “Am I a bad mom for wanting to work”? Something I know lots struggle with and something I got over pretty quickly. Let’s be fair, I was just burning out. I felt tired and frustrated all the time and had definitely lost my sense of self completely. At first it was so jarring being out in the world not as Aleck’s mom but as Lynn Renee Persin, professional, interesting person who still might know how to put an outfit together and converse with adults all day long. The transition definitely had it’s ups and downs. I was working full time during his second birthday and during his casting for his new Batsuit. Basically I was working full time for almost 8 weeks, keeping my photography jobs in between, shooting during the weekends, retouching at night, planning his second birthday party, and then trying to find time and energy for myself or better yet, my totally neglected husband. And at the same time it was up to someone else to get breakfast and lunch in him, up to someone else to get him napping with all his equipment, to shlep him downtown twice a week for therapy, and keep him going not only during therapy sessions but with in between therapy and play dates at home. Boy did we luck out with who we found. His nanny has been amazing, shlepping his walker and all his equipment around to playdates, taking him to the library, and even practicing squats and standing during the few moments of “downtime” they had together. In those weeks that I was working Aleck didn’t throw up, not at all. Marking the longest stretch of time ever without cleaning up any puke. Of course the minute I started back at home the throwing up one day each week began and hasn’t stopped. We’ve decided that I need to get back to work for Aleck’s health ASAP (fingers crossed, had another interview…we shall see).
To recap the last couple of months we’ve celebrated some serious milestones around here. Aleck turned two and we finally got to have a birthday party for him, wanting it to be extra special since his first birthday was so miserable. Then we headed to California for what we wanted to be a relaxing weekend to see friends, family, and to celebrate our friends getting married. Instead we were running around like crazy people and at each other’s throats for most of the weekend. Someone described it well when she said we were so desperate to have a great time that instead it all imploded. There were some moments when we were back connecting with each other again, but there were some moments when, well, let’s just say it wasn’t pretty. This all lead up to our 10th wedding anniversary, a huge milestone that seems to carry a lot of weight when you feel the need to recap the previous 10 years and all that came with it.
Now we’re knee deep in our busy December, lots of doctors appointments, still working on the new batsuit, preparing for taking his metal plate out at the end of January which is now going to be combined with our first round of Botox treatments.. There’s a lot to think about, a lot to worry about, and a lot of changes and adjustments coming our way. The Botox is for his triceps, and they are going to do one of his quads as well, and we’re hoping freezing them will help to activate his biceps and allow for further knee flexion with the treatment to a quad. But our insurance has denied our request to cover Botox so luckily enough our secondary insurance, DSCC has agreed to pick it up one time and one time only. This means that if it is successful, the doctors are estimating it could increase his elbow flexion by 15 to 20 degrees making a huge difference in our goal of self feeding or even being able to rub his nose when it itches, we will need to present an appeal to Blue Cross Blue Shield with as much documentation, videos, and case study reporting that we possibly can do. Before and after videos will need to be done along with measurements, papers, and any other doctors we can tap into who have experience with this will also be helpful. Our entire team is completely on board with this process, we are even reaching out to other doctors out of state who have additional experience with using Botox for kids Aleck’s age and hopefully with his condition.
One of Aleck’s doctors has been doing this for twenty years, she used to have to fly it in from Canada before it became popular in the United States. Unfortunately most of the studies done are for kids with Cerebral Palsy, not with AMC. Therefore the correct doses for size/weight/age have long been established, so that’s not something to worry about, however successful documentation is rare. Aleck is a good candidate because he’s been doing so well, loosening up so much, responding above and beyond to his treatments. With him another 15 to 20 degrees would make a huge difference in his ability to progress , and if it doesn’t work the full effects only last about a month, in our house this is a definite green lit project.
But we also need to talk about the lack of progress Aleck has made in his knees, still barely bending at 90 degrees in the right and less than 90 in the left, hopefully the Botox proves helpful for this as well. That right leg is very turned out and it seems like he’s gone downhill on his practice in standing independently. Tomorrow we are going to transition Aleck from sleeping with the shoes and bar to sleeping with his AFO’s on, something that’s really common for kids with his condition. Honestly, I’m a little frustrated since I’ve been saying for months (at least his last two appointments with his doctor…so that’s almost a year I’ve been talking to them about this) that the turn in his right leg is exactly the angle of his shoes and bar and now I’m really scared that the damage here has been done. Basically it’s a hope and cross fingers time to see if after 6 months or so of being out of his shoes and bar, will his leg return itself to a more regular and useable angle. With it so turned out it makes it harder for him to stand, harder for him to take independent steps, and if it doesn’t correct itself on it’s own we are looking at major leg surgery when he’s around 6 years old. This would mean we’d spend the next 4 years getting him to walk and stand on his own with this leg in this practically unusable condition to them teach him how to do these things all over again after a very painful and very major surgery. Hopefully taking out the metal plate will loosen up the joints and muscles allowing his leg to naturally develop in a more useful position, but there’s no guarantee.
Good thing Aleck is a total champ. Only last week did we introduce the left elbow splint to naps and then to nighttime sleeping, and he barely complains even when it takes me 3 tries to get the darn thing on him. He’s currently sleeping with two hand splints, two elbow splints, shoes and bar. When he wakes up in the middle of the night I do everything I can to make sure I don’t have to pick him up. The additional 6-8 lbs of gear he sleeps with makes it very difficult to pick him up, hold him and comfort him, especially at 3:00am when I’m barely awake. Thank goodness he loves it when we rub his back and that usually quells all cries. I definitely need to get a picture or two today so that we have him documented in full Iron Man gear before we transition to the AFO’s.
There’s tons more to talk about, I know, but I think this entry is simply long enough right now. I promise to do a better job keeping up with this blog since he’s making amazing progress and doing new things every single week. He keeps us all going strong.