Heaven Help Me

Dramatic, I know.  But seriously I feel like that is my plea every night lately.  Just help.  Help me with all of it.  But, really, I am so blessed and things are going well.  This past week has been more drama than I care to re-live anytime soon.  But, we'll get to that soon.  Let's back up a bit.  A few Saturdays ago, we went to look at a van.  We had been looking online for awhile (like a year?) but this was the first in-person visit.  It ended in a purchase with a deal that Jon and I both feel was pretty great.  The necessary pic to celebrate such a savings damaging purchase.  Immediately after purchasing this van, we drove to St Louis.  Well, on Monday anyway.  We went for Benson's appointment with Dr Connolly, a neurologist.  The trip was supposed to be more play than it turned out being, but it was still fun to have Jon home for a week (it was his vacation week).

 Brigham is such a funny kid.  I feel like I should update his antics of late.  He loves tools.  Jon's tools particularly, but really anything he should not play with he is enthralled with.  He likes to sing "Ashes ashes" and turn in circles.  He can say a few words, and has amazing baby jabber.  He has a few phrases too.  He knows some body parts and lots of animals.  His understanding has probably increased the most.  He suddenly understands what we ask him to do.  It's fabulous!  He has a current shoe obsession.  If he isn't wearing shoes, he will try every shoe on that he sees.  If he can't get the shoe on, he will scream his frustrated scream.  It has a very distinct sound.  Brigham typically eats three breakfasts every morning.  I feed him breakfast shortly after he wakes up.  He's usually the first up (aside from Jon who is gone by 6).  Then, when Vanessa and Benson eat, he'll climb up on the table and beg for more food.  Sometimes it isn't so much of a beg and more of a take.  If I eat, he demands to have some as well.  He's basically a tank in the morning. 

 Our little lady is growing so quickly I can hardly stand it.  She started preschool this week.  She is in Miss Phelps class at the Early Childhood Special Education Program.  She is in an integrated classroom with kids who have special needs.  I signed her up for this program feeling it was not about the academics but about the life lessons of learning to get along and be empathetic with children who are different and sometimes difficult to be around.  I'm finding I am having a hard time being ok with her NOT learning all her letters and numbers.  Basically, I think she should be in college or something.  It's my problem, not hers.  It just feels weird and I have slight mom guilt for sending her to a program that only actually gives instruction one of the three hours they are there.  The rest is social time, with people besides her family.  Sigh.  Vanessa has six in her class, though it can hold up to 12 and will fill as the year goes on.  Children can't be in the program until they are 3.  Right now, she is the only girl.  She seems ok with it, but it is the first thing she told me about her class.  She seems to really enjoy her teacher though.  She doesn't seem super thrilled about it when I ask her after school, but she is also really insistent that she likes it and wants to go.  So, I guess it's worth it.  It's clear on the other side of town, about 20-30 minutes away, depending on how late I am and traffic.  That's two hours of driving a day.  I'm worn out after week one, hence why I am sitting on the couch blogging instead of cleaning.

I feel like the last two weeks have been big ones for Benson.  We met his new dr.  We are transferring care to Dr Connolly in St Louis.  She will most likely be a site for ISIS if they go into phase 3 trials.  In which case, he would be a perfect candidate.  She was really good with Benson and kept him at ease the whole time.  She assessed him according to his skills, rather than doing a CMAP, which I liked.  I don't really care what those numbers say and it's EXTREMELY stressful.  According to her assessment, based on his function, he is a solid type 2.  She feels good about the care choices we have made thus far and wants us to monitor his weight really closely for the next two months.  Then we may need to do a gtube, if he just can't pack on the pounds.  He's still hovering around 23 pounds.  On Thursday, we went to our local news station to do a commercial with their anchors for the MDA telethon.  It is basically a fundraising promotion for the MDA.  Benson didn't want anything to do with being there and cried pretty much the whole time.  Everyone was really nice and patient and we returned the following day and he just made some muscles by himself.  They put a cute little clip of him in the commercial.  KSPR is also coming to the house tomorrow to interview Jon and I and do a profile story about Benson.  This is where the cleaning comes into play.  A nice side point of this though is that we are finally hanging up our pictures.  It only took having the news come film our house to get us in gear on that one.  We are also in the process of getting Benson a power wheel chair.  We hope to get it before the end of the year to get maximum insurance coverage (we are close to our out of pocket max).  Benson has been getting a lot better about doing his stander and wearing this vest.  This vest is to help with his scoliosis, he has a 12 degree curve.  He is also wearing his AFOs a lot more.  Those will help with foot pronation.  And, he is working on going in the big potty.  He actually went a whole day with only one accident (that happened to be a poopy accident) and then the next day threw a fit when I tried to put him on the potty.  I have backed off since then, but I would really like him to be done with diapers.

Jon applied for a new position at the hospital and got it.  He's excited about the change.  It doesn't change salary or anything, but he will now be working at the Outpatient Surgery Center.  The patients will be less sick and the overall atmosphere is more relaxed.
Last week Jon had a vacation, and we got a lot done around the house.  We also spent a day at Silver Dollar City.  We enjoyed this visit a little more than our first and found more rides Vanessa could do.  There still isn't much for the boys, which is kind of a bummer :/
Last week I also started to get a weird irritation almost in my left arm pit.  I asked Jon a couple times if there was some kind of a rash there, but nothing appeared.  Finally, late Monday night, I got a blistery rash.  On Tuesday night I realized it was probably shingles and scheduled a dr appointment.  Sure enough, it is.  Let me tell you, shingles is fabulous.  I saw the nurse practitioner since the dr didn't have any appointments that day.  And.... she was a joke.  I always seem to get the nurses that don't know what the heck they are talking about but they are pretty sure they know e.v.e.r.y.t.h.i.n.g.  At least she gave me the right script, but about everything else she said about shingles was wrong.  And, because I am a jerk, I may or may not have sent her an email with a link to the CDC website to correct all her misinformation.