Medical Updates

2 appointments, 2 kids, 2 different places, one at 9am and the other at 9:30...it was an interesting morning!  Thanks to my Mom, it all worked out quite well.  I dropped her and Bryce off at PCH for his GI appointment and then headed over to CRS for Annalise's orthopedic appointment.  Luckily, we both finished up about the same time, so that worked out well.

About a month ago, Bryce had a weight check and had lost weight so they increased his calories and had him check in again today.  I'm not sure what his weight was today, but they have kept his feedings the same.  We do have to go back for a weight check in 2 months and then see the doctor a month later again.  His weight is always up and down, but he is holding his own pretty well.  Dr. McOmber was impressed again that the green smoothies that I have been feeding Bryce (through his tube) continue to keep him regular enough to stay off of Miralax.  He always gives me a bad time about it (in a joking way), but told my Mom today that he has other patients that he sees who could really benefit from something like this and he thinks I should share the info with them.  I would be happy to do that.  I love those green smoothies.  I also like that he is seeing them as a good thing.  Maybe as I talk to him more about switching Bryce to a "real food" blended diet rather than the formula he is on now, he will be open to working with me on that too!

Bryce's other appointment this week was with at the Spasticity clinic.  The doctor he sees there really wants to use botox to help loosen up his arms.  I don't really like the idea because so many people who have kids with AGS have had it done and then seen regression in their children.  I don't know if it is really worth the risk.  She increased his Baclofen a bit, so I think I will see if that helps at all first.  Hopefully the increase will not mess with his breathing like it has sometimes in the past.  She set up another appointment for 3 months and said to give her a call if we decide that we want to do botox before then.  Oh, decisions!

As for Annalise, it looks like she will be having surgery to loosen her Achilles tendon.  Her little legs are so tight, it is hard for her to walk.  She also had an appointment this past week at the spasticity clinic and they started her on Baclofen as well.  I have been able to see a bit of a difference, but not a whole lot yet.  The orthopedic doctor that we met with today said that it might help enough that we would not need to do surgery, but he thinks we should go ahead and schedule it and then I can always cancel if we decide that it isn't necessary.  She is not even able to wear the AFO's that are used to help stretch that tendon because even if I can stretch her enough to get her into it, her foot pops out because it is so tight.  The tightness and the rubbing the wrong way on the AFO's cause her pain, so maybe the surgery is going to be the best.  It is the same type of surgery Bryce had for his hips, just a different area.  That surgery helped him a ton!

Annalise also had an evaluation for an Aug Com device.  She still talks well for the most part, but there are times when she fatigues and resorts to pointing, signs, or trying to speak although we are not able to understand what she is saying.  Her speech therapists thinks we should go ahead and get her the device now so that she can use it when she needs it now and then when/if the time comes that she loses the ability to talk, she will already have another way to communicate.  The people who did the evaluation thought the same thing and she will be getting her own device withing a few months.  They tried out 3 different devices and since her upper body strength was too weak to push the buttons on two of them, she will be getting an iPad with the communication apps installed into it.  I'm pretty sure that her older brothers will think they need a "communication device" too when they see what she has.  :)

And last but not least, some very exciting news.  Tickets have been bought and all arrangements have been made for us to meet with Dr. Vanderver in Washington DC. in April.  We are really looking forward to meeting with her and hearing what she thinks about Bryce and Annalise's condition.  I already have a list of questions for her that I am sure I will add to as time goes on.  It will be so good to meet with someone who knows about AGS and other leukodystrophies and to get her opinion.  She also works with Professor Crow, the doctor in England that has been working with us, so that will be helpful as well.  Hopefully we will come home with a few more answers or at least some new ideas of what to watch for and be aware of as we try to help Bryce and Annalise through all of this.