This is a completely random update; I haven’t put an update on this site for a few years now…  But because of that, I am missing many reference points in Madison’s life and that’s starting to get frustrating.  So really, this is a bit more for me than it is for you…  Plus, it’s been hard to explain all of this to close family and friends (mom!), so here goes.

Nothing ground breaking…  Just a busy week full of lots of information that I’m trying to process.  Writing helps me do that.  J

So my FORTIETH birthday was Monday.  That was fun.  Really fun.  But because of all of the festivities, I wasn’t quite geared up for my week ahead...

We had to head to Roseville on Tuesday morning to see the “Gastroenterologist” (aka the “Poop Doctor”).  You see, Maddie has been sick for about 9 months now.   She has a generally “sick” look about her – often gets grey, has dark circles under her eyes, always feels nauseous, and randomly throws up.  We have been working all year trying to get to the bottom of this.  (Ha!  I just said bottom.)  After many, many tests, appointments, and labs, we still had no answers.  I’m not entirely convinced, but this doctor has diagnosed her with “Functional Fecal Withholding”.  (Sorry to the future Madison for putting this info. on a blog.)  Basically, Madison has a problem with her muscles “down there”.  Not just constipation – it’s more like she really, really should FEEL like she needs to go, but she’s not going – and she doesn’t realize she’s holding anything back.  And when she DOES go, they don’t think she is getting everything out. This can actually be a psychological-type-behavior problem, but because of her random muscle tone, it does seem like it could be more a result of muscle issues.  And because she is half potty-trained (poop yes, pee no), the doctor thinks her muscles might be confused.  Usually those muscles work together in a way, but Madison’s body has not been able to coordinate the two.  So she’s got a confused bottom.  ;-)  So we are doing a full “clean out” this weekend (hello Miralax) and have a maintenance plan from there.  This all sounds very promising – but like I said, I’m not convinced….  Maddie had a HOOT at this appointment, and really enjoyed all the potty talk.  She kept calling the Dr. out - "Momma!  He's sayin' a bad word!"

After Roseville, we headed back to Kaiser in Modesto to see her pediatrician because Madison’s foot and toes had been swollen since the weekend.  You see, Super Mom let her play in the back yard with no shoes on.  She fell, like, 10,000 times on the concrete which did a number on her feet.  And with her high pain tolerance, we tend to let a lot of these things go.  But her foot was warm to the touch and continued swelling.  And, she started to actually complain.  Doctor saw her foot, was more concerned than he usually is (this is about our 10^th foot-and-toes-are-swollen appointment) and wanted to get x-rays ASAP.

Well, we couldn’t get x-rays ASAP, because at this point, I was almost late to Maddie’s IEP.  I dropped her off with Nana, and met Derek at her school for her IEP.  And this wasn’t just her annual IEP; it was her TRI-annual IEP.   (Those in the Special Ed world will appreciate that…)  Basically, a big, huge long meeting discussing every detail of Madison’s being and trying to determine the best plan for her education.  It consists of about 15 different people that work with/assess Madison throughout the year:  teacher, administrator, speech therapist, occupational therapist, nurse, inclusion specialist, physically handicapped inclusion specialist, assistive technology specialist, general education mainstream teacher, adaptive PE specialist, psychologist….  Who am I forgetting?!?  Yes – it takes A LOT of people to educate this child!  (Your tax dollars hard at work, thank you…)  The meeting was 3 hours long.  Seriously.  No major issues or hiccups….  Once again, they tried to throw the “Intellectually Disabled” label on her (AKA Mentally Retarded), and I calmly stated that I will not approve that label – she has a MYRIAD of labels that can be used to qualify her for Special Ed.  The people who don’t know her well were annoyed with me. The people that do know her well were giving me silent high fives.   Yes, her IQ scores stink.  Yes, that might be a correct label (I swear this isn’t a “denial” thing).  BUT, it’s just not necessary at this point.  Just not necessary.  Remember, “the lights are definitely on in Madison’s house”.  ;-)

After the IEP, I went back home and picked up our little jewel to take her back to Kaiser to get that darn foot x-rayed.  Gosh I do love Kaiser.  Everything is open – always, and their service is incredible.  Madison actually LOVES going to Kaiser.  And that’s a good thing because we are there A LOT.  We made some awesome new friends in the waiting room, and got that little adorable foot x-rayed.

We got home about 7:30 and I was just about to keel over.  Oh, this isn’t about me is it?!?   Madison was TOTALLY wiped.  She really was SUCH a trooper ALL DAY LONG.

So then comes Wednesday.  I worked Wednesday because my normal workday is Tuesday, and well, I was at Kaiser all day!  Got home around 8.  Totally pooped.  Oh, we got the xray results – nothing is broken, it’s just a bad sprain.  (My guilt lessens just a smidge; but the kid is still in pain.)

Thursday arrives and this is another important day.  Twice a year, we have a doctor’s appointment with a Kaiser physiatrist and Maddie’s therapists at CCS (CA Children’s Services).  It is here where they determine what kind of therapy Madison needs, talk abut all of her equipment, and assess her overall progress.  We talked a lot about one of everyone’s biggest concerns… the FALLING.  The poor little gal falls at least 100 times a day.  Seriously.  But she’s such a gigantic trooper, she just gets back up again and keeps on going.  We marveled at the fact she has never had a broken bone (knocking wood right now) or had any significant injury.  We talked about how we are all worried about what her future entails – Little Miss just keeps getting taller and lankier and that is not helping her situation AT ALL.  Such a longer distance to drop now than it was 5 years ago…  And to think of what it might look like 5 years in the future…  No, I just can’t go there.  We talked about puberty and what that might do to her “situation” (aaaaahhhhhhhhh!!!)  We talked about her crazy, giganto full-leg braces and wondered if they are actually necessary:  what are they protecting/how are they helping, etc…  We determined that I would be assertive at Shriner’s (that appt. is next week) and explain why we might only need braces that go up to the knee.  (This would be AWESOME: think full-leg braces and potty training; it’s difficult.)  The doctor also mentioned that we might need to be worried about Madison’s spine because of all of this falling and perhaps a spine and brain MRI might be due.  He told me he would talk to her neurologist about this.  Wasn’t expecting that. 

But, it’s at this appointment that Maddie’s Physical Therapist (the super fabulous Amy Miller) always marvels at the incredible ways Madison is able to get around and move, and I just love hearing someone explain all of that.  Our girl really defeats the odds at what she is able to get her body to do.  Amy “gets” and appreciates Madison for all she is.  It’s people like her that make all of this so much easier…

So after this not-quite-expecting-so-much-information appointment, (and another A+ for Madison in the behavior arena) I fly her to school and jam over to my school to try to get some work done (and throw in a video-conference interview for a new position!).  I then pick Savannah up from school who begs me for a haircut.  I was going to say no because I have a phone appointment with Madison’s psychiatrist scheduled, but this kid has put up with a lot this week and I just can’t say no.  So I get her set up with the hair gal and have the phone appointment outside Great Clips.  (I’ve become very flexible in my OLD age.)  It was during this appointment we discussed Madison’s latest concoction of prescription drugs that we are working with to try to curb her lack of impulse control, ADD/ADHD, and “mood disorder” while dealing with her terrible tummy issues, of which the meds could be contributing.  This is our 4^th Psychiatrist and I’m glad I like this gal because Psychiatrists totally annoy me.  She HIGHLY recommended that I seek support through VMRC for behavior therapy because of the poop issue (such a full circle week; started with poop issues, ended with poop issues), but darn it, I just don’t think I’m on board with that.

Right after we get home, the neurologist’s office calls and we get an appointment re: spine/brain stuff I mentioned above.  Wow, Kaiser.  You really are efficient these days.

And after all of this… (the highlight of my week!) I just wasn’t up for Madison’s weekly therapeutic horseback riding lesson this evening.  I put a plea on Facebook to see if anyone would like to help me with her at horse therapy (I was KIND of joking, but deep down hoping someone might actually respond!), and the beautiful and amazing Jennaca showed up with a friend.  I got to sit back and watch.  It was lovely. I just wasn’t up for walking around a dusty circle with a horse for an hour!!!  Madison really, really knows how to bring amazing people into our lives.  Plus she totally rocked it on top of that horse.

I'm writing this as if I've done all of this single-handedly.  Nope.  Derek was the best Wing Man ever this week.  He picked up all of my slack and got us through everything.  Dinner?  I had absolutely NOTHING planned for the week.  He took care of it.  He carted Savannah back and forth to dance, he did way more dishes than a man should ever have to do, and even did a load of laundry.  He's so awesome.  <3

And my dear Mother-In-Law, Barbara... She is just always here when we need her.  Tuesday couldn't have happened without her. 

So…. That just about wraps it up. Why did I spend the last hour writing all of this instead of working or cleaning or sleeping?  I’m not sure, but I’m more at peace now than I was an hour ago.  Next year, after this week just fades in my memory, I will have a place to refer back to, so I can think: wow, that was a crazy week!  And when I don’t quite remember which doctor said what, maybe this will help.   Because this brain is fried and I just don’t think it’s all going to stick.  J  Nighty night!