Friday, November 12, 2010

A Quick Update on M

M had back-to-back appointments yesterday - pretty big ones!  She had a renal ultrasound which, unfortunately, showed that she's having significant urinary stasis.  This means that her bladder is not emptying properly.  As is common with kiddos like her who have little no muscle tone, things like bladder and bowel function are often affected.  We've got her to a point where she poops once or twice a week (if you're not interested in this part, feel free to skip ahead) and it is nice and soft.  However, that means that on the days when she's not pooping, there is likely extra pressure on her bladder and urethra.  Potential complications of stasis are frequent infections and kidney damage, just to name two.  First thing we have to do is get her pooping daily - easier said than done, but we're going to give it a try.  She'll probably have a VCUG when she is hospitalized for her next throat surgery in December. 

At her neuromuscular rehab appt, it was decided that it's time to cast her for bilateral AFOs.  Her achilles' are extremely tight and her little feet are starting to change form (not in a good way).  Since she is a long way off from crawling or walking, her AFOs are going to be solid and fixed, their use primarily to give a nice stretch to her legs/ankles/feet and hopefully prevent further tightening.  We had a brief discussion about Botox, but we're a ways off from considering that as a potential treatment.  Her overall tone, the Doc felt, was a little worse - when I call her my noodle, I'm really not kidding!  Good news is her left arm and hand appear to be stable with the Mckie splint she has.  Her head throwing, head/chest hitting, face scratching seem to be sensory.  M LOVES to be in motion.  She loves to swing and be thrown gently tossed in the air.  She needs vestibular input and we're searching for ways to provide it for her.  She can't be in her Jumperoo because she bangs her head and face.  She's too heavy for her infant swing.  She doesn't sit, roll or crawl.  Her vision impairment prevents her from getting visual sensory input.  We'll be trying out some equipment when we go to the Rehab clinic for casting and see if we can't find her something to satisfy her need for motion.  We're adding one new medication to her regime to see if we can get her a little stronger and improve her endurance a bit.  Overall, a very good, very informative appointment.

Lastly, it was EEG time - the most dreaded of all appointments.  M cannot stand to have her head touched.  She barely tolerates having her hair combed.  Attaching all the EEG leads and then subsequently taking them all off is a big ordeal for her (and the poor tech that gets stuck with us).  Luckily, she's so worn out after getting them on, she goes right to sleep for the actual test.  While we don't have the "official" read on the tracing yet, the techs there are never shy about letting me take a look and comparing to previous tracings.  This one looked better than any she's ever had.  She had very little disorganization and the tracings were almost....get this....symmetrical!  This is HUGE!  I have to say that it correlates nicely with her clinically.  She's had very few seizures since starting the Tri-Leptal last month.  We haven't seen a spasm (knock wood) in several months.  She's been more alert, happier, more interactive and sleeping better, too. 

I also drew labs on her last week and all is looking perfect!

We're still fighting the insurance to get her Synagis for the season.  It's an uphill battle, but little do they know who they're dealing with.  Sometimes I get the feeling they try to ignore you long enough in hopes you'll go away.  Not happening!!

I got word today that the anterior trunk support vest that was not ordered with her wheelchair is FINALLY in (after FIVE WEEKS).  We also lost a couple of very important parts of the chair and those are on order.  Next Thursday I'll make the trek to the medical supply place for a re-fitting, "installation" of the vest, and hopefully repair. 

I guess this wasn't a very "quick" update after all.  That's what's going on with our girl right now.


Linda Schuhmacher said...

Shannon you are doing an amazing job & you are so positive & full of love for each of your children. I think back to HS where I couldn't of imagined any of our life outcomes they way they are. However, I am glad we have reconnected. We continue to pray for your family.

Allison said...

I'm so happy to hear such a good report on M. She is such a fighter...she must get that from her momma! Insurance companies have no idea how much they are in for when they mess with Momma Bear.