Conversations of the Day

Here’s the update on Paige’s rehab visit along with some other fun conversations I’ve had today.

Heather:  I’m going to get my hair colored today, I’m getting it lighter.  Lisa:  Really, why?  Heather:  Because I’m going for a less bitter, lighter personality.  Lisa:  You really think hair’s going to help?

Haley (seeing that I brought coffee into the car):  Mom you’d better not even spill that or else Dad is gonna get really pissed.  Heather:  Thanks, Hay.  Haley:  And, don’t leave that cup in here either.

Dr. Dave:  Paige is still doing better.  I’m not recommending botox again.  I just heard a speaker here telling us not to think that spinal cord injuries in kids are done recovering after a year.  Heather:  Did you tell your colleagues that?

Dr. Dave:  I don’t think we should do the tendon transfer at this point either.  Heather:  Great, because the last surgery went so well.

Dr. Dave:  Everyone always talks about Paige.  Our whole department loves her.  Jenny wants to take her home with her.  Heather:  It’s a package deal, she gets Haley too.  Jenny:  Nevermind.

Heather:  I had to go to confession with Grace.  Mignon:  Really, what did you get for penance?  Heather:  Nothing.  Mignon:  Could he hear you?

Twenty Ten

For those of you who follow this blog to see how my poor daughter Paige is doing, there is good news!  She is measuring a muscle strength of 4-/5, and her hamstrings seem to be getting looser.  She has new braces (which she informed me that we shall not call boots as boots are clearly a fashion statement).  Tomorrow we will be heading back down to the hospital for Paige’s 6 month appt with her rehab specialist (not the one I dislike immeasurably).  We are probably going to discuss the hands/finger predicament coupled with the inability to supinate on the left arm.  Yep, I’m really loading this up with medical jargon.  It’s stressful as I’m pretty sure our only course of action would be a tendon transfer surgery.  And, since the last surgery went so fantastically well, I would obviously hesitate to embrace this idea.

In other news, since Paige will be in all day first grade next year, my mid-life crisis continues to loom.  In addition to the psychological stress of that, I also had to go to confession with Grace last month.  And, while I could clearly have taken a laundry list of petty crimes, I went with a little bit of a larger scale confession regarding my reaction to Paige’s situation.  My wonderful husband had mentioned that I was not the ray of sunshine that I once was, and sometimes people don’t really like so much bitterness.  So, I copped to being bitter which really is a pretty big sin.  And, remarkably, I felt better and got some reassuring words from our priest.  I’ve been marginally upbeat ever since, so I would recommend a little confession for the soul of my Catholic friends.  And, go for the big one.  Everyone gossips and yells at their kids  

Oh, here’s some great news because we just don’t spend enough time at the hospital.  Haley needs speech therapy.  Seriously, I barely care.  We are already at the hospital at least two times a week (this week it’s 3).  So, I guess other kindergarteners can just make fun of her.  She’s pretty tough and would possibly punch them anyway.  I must be a little overwhelmed with stress though because today I started crying for no real reason in Target.  This is troublesome because 1)I don’t really cry and 2) I love Target.  If it was Walmart, it would have been justifiable.  But, I guess we can’t pick our spots to freak out.   I’m probably going to end up back in confession.

The Best Christmas Ever

So, finally, the kids are watching a movie on this rainy day and I found myself bored (yep, “Dear Life, I miss you.  Love, Heather”).  I wanted to write a November entry about how much I continued to hate Thanksgiving, but I was deterred when I read a blog about another woman (I mean young girl like myself) who hated Thanksgiving.  The other person hated Thanksgiving because her mother died on Thanksgiving and despite the fact that she and her sister had the wherewithal to then do some tequila shots (admirable), it was obviously a horrible Thanksgiving memory.  So, someone commented on her post that she should have been thankful to have had her mother around into her adulthood and celebrate that fact.  Which is exactly why I hate Thanksgiving.  Someone is always telling you that  how you should be grateful.  Like it’s a contest to see whose situation is crappier and that you should be grateful for yours.  Seriously, I have a disabled daughter with a possibly progressive vascular disease, I could take out a lot of people in a crappy contest.  But I say pass the tequila and let everyone deal with their grief in their own way.    And, never fear, I still hate Thanksgiving.

But, it’s onto Christmas now which I do not hate.  Although I might start because I’m not really getting any presents this year since we are saving money.  The kids keep going around saying “It’s going to be the best Christmas EVER”.  And, I say “no, it isn’t.”  Damn kids, why do they have to be so optimistic.  They also keep taking ornaments off the tree as if they are toys.  And, then there are also the cute little picture ornaments that have their smiling faces through the years smiling out at me.  It’s simply too hard to hate Christmas.  There’s too much goodness.  Plus, the karma of hating the time of year celebrating the birth of Jesus would not be good at all.  So, I actually love Christmas, even the present less version.

Haley has been on fire with her behavior lately.  Every time we go to Kroger’s, she screams “Piss, I gotta take a piss” (I don’t know where she gets that mouth).  Luckily, she doesn’t speak that clearly to be understood by the masses.  And, speaking of Mass, Haley refused to put her dollar into the offering a couple weeks ago.  She said that she loved it too much and would only agree to give it up if I promised her a new dollar at home.  We had to take to the priest after mass that day.  When we were watching the Grinch the other night, she watched him steal all of the presents, trees, etc.  Then when he got to the fridge and took all of the food, she said “Wow, that was REALLY mean”.

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.