Saturday, April 16, 2011

Neuropsych results

I know some people have been waiting the results.  Well the results are in--and almost a week later I'm still reeling.  I'll wait until I get the written report so I can use the formal/medical terms--but basically, Chewie is functioning as a mildly mentally retarded individual--also as a "non medicated ADHD child"--although he was medicated that day.  So-medication has been changed, per our request.  He's on Adderall now, just a low dose.  We'll see how that goes.  We have a meeting planned with teachers, principal and ourselves to start making arrangements for next year.  I now have more then enough documentation to get Chewie's age changed by a year.  That would certainly improved his test results--low range of normal.  Considering he couldn't hear just over 2 years ago===well, we see what next years' neuropsych results show us!

Saturday, February 26, 2011

Badger State games

Julia at the Badger State games.  Not bad for a year off for competitions!

Monday, January 31, 2011

Keeping things normal







One of the most important things to keeping our family going is "normal" and "fun".  Keeping that in mind, I finally had an afternoon free.  Which meant Charlie visited St. Dennis--and loved it!!! and I took the kids sledding.  Ted joined us after work.  By the way--I still don't like the cold and I froze my ass off!  Here's a few photos--not usual quality because it was the i-phone--but you can see the fun.

Monday, January 17, 2011

Something cheerful--skating

                                        Julia putting her skates on
                                        The girls getting ready to get out on the ice
                                          Warm up
                                          Julia was freezing so one of the older girls wrapped her up in her jacket to       warm her up.
                                           Finally out on the ice

Saturday, January 15, 2011

How the Hell do I get out of this soap opera???

If you are ever bored, come join my clan.  Boredom never happens here.  Well, as you know, the MRI originally found a chiari malformation and some enlarged ventricles.  This past week, Chewie went in for a more extensive MRI--to check for a cyst in his spine--and for, what I thought, was just a 24 hours stay with a special monitor in his skull (ICP monitoring)--yes, that does involve drilling a hole in his skull--actually 2--one for going into his head and one for the monitor to go out.  Due to the stress and everything--to prevent burnout, I broke down and told Ted he had to stay overnight.  So, the MRI was late starting.  I left to pick up the kids at school, Ted stayed.  Chewie went to the pediatric ICU after the monitor was placed.  And didn't wake up until 10pm!!  The Badger Hockey players came by and he didn't even wake up for that--I thought he would be pissed--but he was cool with the picture he got and the signed program.  Anyways, once awake he stayed up until 3:30 am.  Ted basically got no sleep because the ICP monitor kept going off--his pressures were going up.  I came back the next am and stayed the day.  The doctor decided to keep him one more day for monitoring.  The final result: hydrocephalus.  Wonderful (said with much sarcasm).  What to do now??  Well, we don't know if that is the cause of the developmental delays.  Due to the fact that he HAS been improving with the ADHD meds and really he isn't having any other symptoms--the initial decision is to wait and do serial neuropsych test to watch for cognitive loss.  Back to fighting with the insurance company for neuropsych.  For some reason I don't think its going to be a problem this time!  So, the monitor came out--and staples went in--and Chewie screamed----loudly.  He's back home now.  I personally am just worn out.  Between Chewie, Julia, Rauan upset because he isn't getting enough attention, a puppy that chews, an absolutely filthy house, and 2 jobs--and not to mention some of the other crap in my family--I'm burnt out.  I want off this soap opera, merry go round, crazy mixed up life.  Whoever said God only gives you what you can take was totally FULL OF SHIT!!! 

So, what now?  We go on.  Decisions are made and we continue to move onward to give Chewie, Rauan and Julia the opportunity to live to their fullest potential. 

Sunday, January 2, 2011

Complications

Sunday December 26th Julia developed some fairly significant fevers in addition to her nasty cough.  We were able to bring them down with Tylenol (no ibuprofen with recent surgery) and on Wednesday she went  24 hours without a fever.  Yeah--thought she was on the road to recovery.  NOT!!  Thursday, after our last social work post placement visit, Ted and I took the kids to a movie.  After the movie, Julia coughed so hard she vomited all over the van.  And the fevers came back.  I listened with my stethoscope and thought I heard some crackles--but it cleared quickly.  During the early hours of the 31st, Julia woke up with a severe coughing fit, high temperature, rapid breathing, and some "tugging" when breathing.  Needless to say--momma the pediatric nurse was scared shitless--but was also concerned she was reading too much into it.  So I called my night shift coworkers and asked their opinion.  Its what we would do if one of us had questions with a patient.  All advised to bring her into the ER.  Which I did.  ER doctor heard something that passed in her lungs, saw the increased work of breathing, low pulse oximetry, etc etc.  So, chest xray time--which showed pneumonia.  The ER doctor called it "hospital acquired pneumonia".  So, what does that mean?  The thought is that possibly, during her surgery, she somehow aspirated around her breathing tube.  Rare occurrence--but it does happen.  She did come in with a cough--but her lungs were clear, no fever.  So, who knows?  What caused what?  We'll never know.
So, because mom is anal retentive and a little nuts--Julia was able to come home with her own personal pediatric nurse literally breathing down her neck--and antibiotics.  Its taken a couple of days--but she's rebounding.  Still coughing--which I expect for a week or so.
The bone graft looks good.  Next up--wait and see how it takes and orthodontics.