Dream Dinners

We just got the test results back from our post-Lokomat test, and really they were not that much better.  However, we had a different rater and it is generally agreed that she is moving around better.  We are now doing electrical stimulation for her hands which is really fun.  She says it just tickles (unless you crank up the voltage), but I accidentally stimulated myself the other day, and it was not great.  So, I don’t know but as with most things, Paige seems to be dealing with it well.  The only thing that Paige does not deal well with is yelling directed at her.  She will respond by saying things like “you are the worst mom ever” or “you are breaking my heart”.  Steve never yells at her, but last night he did after she called crab legs “chicken” (we really try to get our kids to correctly label food), and all hell broke loose.  She’s sobbing that I am now her favorite parent, and Daddy has broken her heart.  Steve is on the verge of sobbing himself when I take the opportunity to ask Paige if she would now chose to live with me if we ever got a divorce.   Then, I hugged her and said I don’t know why your daddy is so mean.  I think he’s the worst mom ever.  They are both seeing a counselor today.

Anyway, I do always wonder why Paige is really just happy and enjoys therapy because I hate it and all I do is drive there and entertain Haley.  Does Paige really only care whether or not we love her?  I think the real answer is that Paige has learned the true secret to a happy life:  low expectations.  Case in point:  our dinner conversation where we all had to say who we would be our dream dinner date.  Grace’s was Miranda Cosgrove (iCarly), Haley wanted Selena Gomez, Steve said George Jallo (Paige’s neurosurgeon, Steve has a slight obsession), I said Michael Cera (obviously).  Who did Paige pick?  Emily from her class.   She’ll be over next week.  The rest of us will continue to want what we will never get.

An Unexpected Development

Here’s something that we did not see coming a year and a half later . . . Paige is getting better.  And, it’s not just me thinking that, I’m usually the last person who ever thinks she is getting better.  Verifiable measurements and endurance tests have concluded that Paige has improved with Lokomat training.  Today was our last Lokomat session, and the person who is taking our spot in the study (there can only be around 12 people training during any given time period) is driving 4 hours each way for their session.  I would actually have to confess that it might be worth it.  

The next great idea in her recovery will be E-stim, where they will attach “stickers” to her hand and I will stimulate them while they are doing something (like writing or playdough).  This is in hopes to stimulate unresponsive nerve endings.  Steve loves this idea because it was Dr. Jallo’s from Hopkins.  More to come on . . .

We are also switching our PT down to the main hospital at Childrens because apparently that’s where they keep the smart ones (just kidding, sort of).  I like her new PT, so we are excited to start back with traditional therapy to see if we can keep her new baseline in place.   We also had a great visit from her rehab doctor who thinks she is doing super and will continue to improve under the new PT plan.  And, thank God in heaven, the resident who doesn’t understand math has finally transferred.  We’ll really miss her and her crazy incompetent antics.

So, all is well in the land of Paige.  And, I soon might have a little down time since we don’t have to drive downtown three times per week.  Sure, I’ll miss the furniture on the porches and the police cars, but we’ll always have the zoo to go to.

Hola! Haley has made a friend.

Well, I am going to go out on a limb and say that I think Lokomat is helping Paige.  That is on days that she does not have it because she’s usually too tired to move after working out on it.  Today, she seemed most certainly more upright and slightly faster.  So, we may have made a friend in Lokomat.  It is not so friendly that we have to drive down there three times a week, but we only have 6 more visits left.  I am a firm believer that you can suffer through anything if there is a firm end date in sight.  Except Thanksgiving (just kidding).

 

So, let me recommend to all you parents out there the fun time of helping out in your child’s 2^nd grade class.  I say this because “pretty” and “beautiful” on both on the 2^nd grade word wall list.  It is just hilarious to help the little cuties sound out those words and then use them in my favorite sentence “Grace’s mom is very PRETTY”.  Those kids just laugh and laugh (not stare at me blankly like who are you lady and when was the last time you showered?).

 

And, how is our young lass Haley doing?  Well, she is making friends, let me tell you.  For weeks and weeks, I have been hearing about Elinor from school.  Apparently, every day Max hides behind the kitchen and Haley and Elinor find him (must be a difficult search).  Of course this sort of attachment translates into Haley torturing me about when Elinor can come over.  Under the non-driving down to the hospital 3x a week, non-soccer season world, this would not be torture but instead a great idea.  So, she eventually bothers me enough to firm something up with Elinor’s mother (who has an adorable Scandinavian accent).  I pick Elinor and Haley up from school together, and Haley is downright gleeful.  Every comment in the car is just a louder scream with maniacal laughter.  She adds “Elinor” to the end of each of her comments to emphasize that she has an actual friend in the vehicle.  So, we go home and Elinor is super cute but just doesn’t say much.  Doesn’t each much fruit salad and macaroni and cheese either.  Nor does she really enjoy her root beer float (we go all out here for playdates).  I do keep hearing Haley’s voice upstairs as they are playing.  Everything goes great, and I really think that cute little Elinor doesn’t seem to talk as much as loud mouth insane Haley.  Elinor’s mother comes to get her, and says “Sometimes, I don’t understand her yet.  She does understand most words.  But, her English is not so good”.  Well, hell, neither is Haley’s.

Amazing things

It’s amazing what you can wrap your head around.  Like Paige’s situation.  If I would have imagined such a struggle with my child, I’d be certain it would have killed me.  And, now albeit there is some bitterness and a definite hard edge to my personality, we are all just handling it fine.  Here’s another one–Haley just keeps on urinating inappropriately.  While at Grace’s long and rainy soccer practice, we brought snacks and a movie for the car.  About half way through, Haley just goes in the way back and says “I have to pee”.  I respond, “Well, there’s not much I can do about that right now”.  Haley, “I’m just peeing now”.  Sure enough, big puddle in the way back.  And yet she wondered why we had to go through the drive through at dinner instead of enjoying a table at McDonald’s.  Today’s double hitter soccer game, she tells me she has to go (as does Paige), so I start lugging Paige the half mile to the port-o-potty.  I tell Haley to come on but she can’t stop playing soccer long enough to come.  Sure enough when I return Haley’s pants are wet from urine and she is putting on a singing and dancing concert for the strangers sitting next to us.  The guy tells me that we could win $10,000 if we got her on video.  Whatever, it’s less funny when you see it everyday and know shes singing in urine (not really, it’s actually kind of funnier that way).

So,  a  couple nights ago, Haley was screaming that she needed me to tuck her in again.  Steve says, “that’s all you with all of these damn bedtime rituals.”  So, tucking a 4 yr old is some kind of elaborate routine that we should break.  I guess we could just pat her head after dinner and tell her to go shower up and hit the sack.  My parenting is not that super but I might have to stick with actually putting the kids in their bed.

Her is my best friend

Hmmm, botox does not seem to be helping.  If anything, it is making things worse.  And, how is lokomat going?  It actually might be helping Paige walk faster but driving downtown three times a week is making me go insane a lot faster too.  Faster is not necessarily a better thing.  School is going fairly well.  Paige loves it but is pissed that her friend Emily can read already and she cannot.  Well, Emily is an only child (and I don’t think that they have to drive downtown every afternoon to the hospital either).  That kind of stuff is just going to burn us.  Also under things that I am not thrilled about is the fact that school has Paige use a walker the entire day.   I could make a big deal about it, but I am going to wait until the blissful day that lokomat is over so that I can devote more time to developing my argument. 

The biggest school issue is recess.  Not much Paige can do except to swing.  Good thing her aide likes to swing her.  If I were an aide, I think I would love to have Paige.  She’s cute and does what you say.  Although she did demand a horn (in the girliest color you can find) for her walker.  Good for her because if they would have never brought out that damn walker, they wouldn’t be searching garage sales for a pink horn right now either.

In the most surprising of news, Haley loves school this year.  She has turned 4 now, and occasionally uses socially acceptable behavior.  She still remains steadfast that she will not conjugate subjects and verbs though.  As in “Her’s my best friend.  I can’t give it up” which is what she says every Friday when she gets invited over to her friend’s house instead of having to suffer through another afternoon of watching Paige lokomat after a fun drive to the hospital.  Paige is always crying that she wants Haley with us which prompts Haley show of loyalty to her friends. 

The hospital trips have become games for us to not hate them.  We are there so much that people have started asking us for directions and the parking garage guy just yells “Thanks for wearing your seatbelt” and waves me on through.  Except for this Friday when he said. “Be careful this weekend.  It’s oktoberfest”.  Dude, I have three kids and live in the suburbs.  Unless it’s on a soccer field, I’m probably going to have to miss it.  We also play a fun car game down there about strange things we see outside.  The strangest was a large woman rolling around screaming.  The police were already there though, so I assume it worked out.  We often see furniture which the kids find hilarious.

Steve, we really are leaving

So, let’s just go ahead and get out of the way that I have seen nothing new from the botox injections.  Are they not going to work?  Did we not inject enough into the hamstrings?  I don’t know, but we will be in communication with Johns Hopkins and possibly scheduling botox with them next time we are there if they would recommend it.  Otherwise, we’ll just save the botox for when I’m 40.  So, how is Lokomat going?  Well, it sure is fun driving downtown after school three times a week, but I can’t really say that I have seen a difference either.    I would be disappointed but my expectations were low anyway.  It’s fun to try new things if nothing else, right?

In speaking of new things, isn’t it fun as parents to socialize with your children.  Especially when you are going to dinner with the nutballs at a beautiful new house.  Unfortunately for this story, I was driving us home so only had one early drink.   So, we are all sitting at the table enjoying some after dinner wine (water in my case) when Haley barrels down the stairs yelling (really screaming), “Mom, I ready to go home now”.  It’s not really like Haley to call it like that.  So, I go out into the foyer to tell her to go back upstairs for the movie when what do my eyes behold?  Nothing except when I bend down to usher her back upstairs, her pants are soaked with urine.  My 4 year old daughter has urinated all over herself in a very expensive home that we have never been invited to (surely we will now be invited back).  So I calmly yell to Steve, “Looks like we really are leaving”.  Then, the party is in an uproar to see what happened.  I proudly explain that even though Haley is well aware of indoor plumbing, she chose to pee all over herself.  I then dispatch Steve up to the movie room to find out where the rest of the urine went.  Fantastic.  Minutes later after I’m sure of what was an exhaustive search, Steve says nothing else was wet.   Right.  Our hostess has given Haley some lovely boy clothes, and Haley is not one bit embarrassed by her antics and just rejoins the par-tay like she is the picture perfect guest.  Until that point, we were doing quite well as my friend’s husband had eaten some wax and then spit it out in front of everyone when she yelled “You are eating wax”.  In his defense, he thought it was a fruit roll-up.  Good times.

Paging Meredith Gray

So, the burning question at hand is how did the botox go? Well, let me put your mind at ease that my forehead still looks as crinkly as ever so there were no unattended viles.  As far as Paige went, it was a scream fest.  And, it was not ordinary crying, she was actually screaming “WAAHHH” and for a while quacking like a possessed duck.  Yes, she was medicated.  It was all going just fine when we got there . . . no traffic, our usual parking spot, etc.  Child life came in to give us a video because frankly who does not want to watch Dora while getting 16 injections in their legs.  Then, we gave her the medicine to make her loopy and forget the whole experience (Steve informed me that Jon from Jon and Kate plus 8 but now Jon just dates got that same drug when he got his famous hair plugs.  Great, if Jon is doing it, God knows it’s the right thing to do).  The medicine went over like a lead balloon (worse than Motrin better than Tegratol).  The nurse and I were in a wonderful chatting groove when she asked me when I thought the medicine was working.  Since I am a rip the band-aid off person, I said let’s just do it in five minutes because the anticipation is worse.

That thought was prior to my next interaction with the resident.  The very same resident who thought I was serious at my prior visit when I asked for the leftover botox.  My God in heaven, when is this woman rotating?!!   So, the real doctor and the resident were going to simultaneously inject each leg.  The child life 18 year old girl was showing Paige a princess book as she was screaming her head off.  I kid you not when I say that I had Paige’s head in my lap and her legs all ready to go when the real doctor had to explain the dosing of the injections not one but SIX times to the resident as she did not understand it.  Finally, there was a picture drawn.  The nurse was also trying to help her, but I was just like “seriously, this is stressing Paige out” as picture #2 was about to be drawn. The real doctor asked me if I wanted them to go outside, but I must have given him a really clear look because he then just said “I’ll just do it all myself”.   Then, the resident apparently had an epiphany and understood how to do it.  I stated (in a non-joking way to pay her back for never getting my jokes), “You can do it if you really understand now”.  So, any medical professional out there, here is a tip . . . . don’t act so stupid in front of a patient’s parent.  If you are learning, get it down before you come into the room.  It’s just math.

I’m proud to say other than calling the debate between real doctor and wannabe doctor (who I’d never go to), I was really the picture of calm reassurance.  Paige was yelling crazy things (although nothing as bad as when an undrugged Grace threw a water bottle at Paige yesterday and yelled, “here’s your freaking water”–where in the hell did she get that?), and I was just sitting there with my indoor voice looking at the princess pictures.  If this is any indication, Paige is going to be a hilarious drunk as she was singing and dancing this stuffed cat (a present from the hospital) around the car on the ride home.  In a really cute moment, she said at the elevator, “I’m ready to try to walk now”–because she knew that the shots were suppose to help her walk.

As for the drug’s, they were suppose to make her forget the experience, but she still had a fairly accurate description of what happened when she went to bed.  Maybe it takes 30 years to kick in because I barely remember a thing.  So now we wait and see.  And, hope that damn resident gets rotated soon.

Tough Choices

So, it was a rough week around here and we got to cap it off with a concussion scare.  Just when we were thinking that Paige’s walking was looking a little better, she did indeed go down hard.  As luck would have it, she went down 5 minutes before I was to leave for my annual haircut at Mitchell’s Spa.  You did read that correctly that I only get my haircut once a year.  So, considering Paige gets an average of 2 concussions per year, the haircut was actually the anomaly in this scenario.  What is a good mom to do . . . gut it out and wait to see if Paige needs a CT scan or proceed with the spa day.  Honestly, I don’t profess to be a fantastic mother, I’m barely passable on some days.  I did indeed head on over to the spa.  I did call home a few times, and in my defense my mom was here so there were technically speaking two adults on hand.  And, I asked my metrosexual hair cut guy if I could check in after my shampoo.  Yes, he did look at me like “why the hell are you in here for a haircut lady if your child might need to go to the ER”.  But, he wanted a tip so he just politely said “absolutely, you selfish bitch of a mother”.  Great news . . . there was no need to head to the ER, we are pretty good at managing minor concussions ourselves.  The number for children’s services is 777-7329.  Please say that Haley was the victim.

When life hands you lemons, make a margarita.

Just Compensation

So, I happen to have the opinion that if you have a really big problem in life (sort of like a disabled daughter) that there should be a big scale of justice out there in the world where you really should not have to have silly little additional stress.  Like your painter shouldn’t paint your bedroom the wrong color, etc.  And, your other children should not develop emotional problems.  But, guess what?  The roller coaster runs the same way for everyone, and this week I have felt like crying about 5 times which is 5 times more than I have cried in the whole last year (which is saying something).  And, since I only bash medical professionals and fellow church goers in my blog, suffice to say no details of my distress will be forthcoming.  Except to say that as with most failures, I certainly played a role in my own demise.  So the only thing I’m left to ponder is that at this point in my life, I should really start playing the lottery because something’s gotta give.  And, that’s it because Steve (rightly so) told me I had to get over my problem today and be normal and not melodramatic from here on out.  Or at least until I want to have another inappropriate meltdown over something that I will not even remember on my deathbed.  I actually like to use the deathbed analogy a lot when making decisions.  It’s going to suck if I actually just die super quick without ever getting the chance to reflect on how well I’ve lived

Next week is Botox and Lokomat and the first day of school!!  And, Grace went ahead and got those dreaded bangs that I told her she will just want to grow out soon.  Haley runs around the place doing whatever the hell she wants and then just yells, “Sorry, I’m bad”.  It is sort of hilarious.  When does school start for that one??!!  Speaking of which I still have no plan on what I will do with my daily 2 hours of free time.  Showering is out.  I think I may just continue to blog about the ups and downs of mediocre parenting.

Summertime Blues

I am beginning to dread the start of school.  Not so much because I worship my children so much that I will be  devastated to be alone for 2 1/2 hours a day for 4 days a week.  I’m pretty pumped up about that.  What the hell am I going to do with myself?  Prior to my kids, I took golf lessons, tennis lessons, had a career I didn’t really care about and generally pissed away money.  Not so much any of that works for me now.  I can only volunteer at school so much, and I also quit my part time job teaching cute little kids cute little lessons.  I wonder if all stay at home mom’s have a career crisis when their kids go to school.  But, seriously, it’s not like I can go back to work and ask for a job that starts at 10am, ends at 3pm and has all major holidays and summers off.  It’s best I just do nothing.  I might start watching tv.

So, Lokomat starts up in 3 more weeks and that is also when the botox injections will be.  We have a very busy September heading our way with 3 trips a week downtown.  It’s actually great that we have some new ideas flowing.  Paige is really excited to start kindergarten.  She is also playing soccer this fall in Cincinnati TOP soccer.  I have a good feeling that she might score a goal.  She will understand the concept so if she can actually get a couple of kicks off, I think we are looking good for a hat trick.  Grace wants to start the school year off with a new haircut that includes bangs.  I wish I was kidding.  But, it’s wrong to overemphasize hair (at least I pretend it is) so I am just trying to casually suggest that bangs are the work of the devil.  I mentioned the half bang as an alternative.  She usually enjoys not listening to me so I’m sure that she is going to order the thickest, most 80’s version of hair bangs that I will ever see.  We may be blinded by them.  Meanwhile, Haley continues to be Haley and defy most explanation.  She did not make anyone move  in Mass this week even though we were sitting next to Celine Dion (I know I go to church but it probably doesn’t count much if I can’t be nice to my fellow person).  Haley did not disappoint though and continued licking us and rolling around in the pew.  I’m really going to miss her when school starts.