Medical Adventures with Miss Banana: Trust My Instincts

I would think that by now I would be one of those bad-arse mothers that could tell lousy doctors where to go, but alas, I am not.

I'm getting better, but sometimes I still find myself deferring to some M.D.'s opinion when really, I should just trust my own instincts.

Over the past week, I got that lesson in yet another Medical Adventure with my little Miss B.

On March 23rd, Miss B fell down a step?  off a chair and down a step??  and hurt her foot.  No one is quite sure what happened.  My sister was watching my kids for the weekend and because nothing seemed swollen or bruised, we just let Miss B keep doing her thang.  The next night when Dr. C and I went to pick up the kids, Miss B still wouldn't put a lot of weight on her right foot, but still no swelling or bruising anywhere.

Sunday morning, I became more concerned because she didn't want to walk on it.  I took her into Urgent Care, where the doctor looked at her for 3 seconds and proclaimed that she had simply "overstretched the tendons" and that x-rays were completely unnecessary.  I explained to him that Miss B had a very high pain threshold, and wouldn't it be better to x-ray it just to be sure? 

"No.  Just give her a few days and she'll be fine."

I left the office feeling a bit unsettled and questioning my judgement--was I just being overanxious?

By Tuesday, Miss B was STILL complaining that it hurt and would only walk on the outside of her foot.  So I took her into the pediatrician (LOVE her!) who immediately said we needed to x-ray. 

Ten minutes later, a definitive. 

Miss B's first metatarsal was fractured.

Um, would have been nice to know that on Sunday.  Let's just say I'll never go back to THAT urgent care.

Our pediatrician set up an appointment with a pediatric orthopedic specialist, the soonest we could get in was Thursday morning at 7:45--before school and while Dr. C was traveling--which meant I had to take all three kiddos with me. 

Yay.

After trying to corral all three of them in a tiny room ("Stay out of the red trashcan!!  See that "bio hazard" sign?!  It means it's not safe!"  and "No, you may not jump from the bed to the spin-y stool, you will break your arm!")  I was already a bit frazzled.  The doctor came in and was no help.

His first statement to me was that Miss B's SureStep SMO's (which I think have done wonders for her ankle stability) were pointless and that the only reason to have them was to make me feel better and so that some brace company got money. 

Uh-huh.

Hey doc, I've lost all respect for you already, and we haven't even talked about why we're here.  This probably isn't going to be a good visit.  Just sayin'.

He then went on to tell me that, "there was no point in casting Miss B's foot because she is going to have problems anyway."  and "it would take four people to hold her down to get the cast on, so it's not really worth it" and "it's already been broken for a week and she's gotten around fine, let's just give it a few more weeks and see what happens."

The way he presented it to me, it sounded like he didn't want to cast her foot simply because it would be inconvenient.  To me, that is unacceptable.

So I went home, wondering what the h*** was wrong with doctors this week, called the pediatrician and got a referral to another pediatric ortho specialist the next day.

After having a day to get over my irritation at the first guy, I was much calmer by the time we got to that appointment.  And the 2nd doctor actually listened to me.  (Hooray!!)  He agreed that her foot did not need a cast, but thankfully he explained his opinion by describing why it was not medically necessary and how it could even be harmful to her. 

AND he said he was happy to see her in her SMOs.

And so I chalk this whole much-ado-about-little experience as another trust-my-gut lesson learned.  If I think that something is wrong with my daughter, I need to trust that feeling and not let a doctor blow me off. And if I don't get answers that make sense, I have to push to get real answers from a different doctor. 

It's up to me to make sure Miss B is being taken care of by the medical community the way she needs.

Lesson learned.

And, just because having a broken foot seems to have not slowed my little lady down much, I leave you with some pictures of her--loving life as always.

The Other Side of the Card.

While I am currently focused on our upcoming move and in the thick of trying to keep my house clean for potential buyers (Side note: Anybody want to buy my house?  And: Please don't make me go through the work of getting/keeping my house ready to show if you aren't going to buy.  Just sayin'.) I am attempting to mix in at least a few of our annual Christmas traditions.

One of which is our annual Christmas card pictures.  I was happily getting the kids in their Christmas picture clothes, when our realtor called and told me some people were coming to look at our house in an hour and 15 min., and could we please be out by then?

At which point, Dr. C and I cranked the stress level up about 50 notches, threw the Christmas-pic clothes on the kids, buckled them all into the van, turned on Charlotte's Web and then frantically ran back inside to do some last-minute OCD arranging of the towels in the linen closet cleaning.

By the time we drove away, my once-happy-children had been imprisoned sitting in the van for almost an hour, Charlotte had long since died and that Norman-Rockwell-Christmas-picture ideal died with her.  (Note to self: Next time I put the kids in the van to frantically clean, choose a reeeaaaalllllly long movie.)

We went anyway.

I did get a *few* good ones...enough for the card...but I got a wholelotta bad ones.  Lovely.

Here is a sampling, for your viewing pleasure.  (Displeasure?)

Freed from the confines of the van, Fearless takes off the moment we get unbuckled.  Takes several minutes to bring him back. 

Don't be fooled by this cute pic--T-Man was pinching Fearless on the back.  Nice. 

T-Man: I will fake smile now because I know I'm in trouble for pinching.
Miss B: There is drama happening, so I must cry.
Fearless: "Mooooooommmmmy...T-Man PINCHED me!"

We are lucky to be alive after receiving that look.

Now it's T-Man's turn to run away.  Yay.

This cry was legitimate, fell down and scraped her knees.  So sorry, little love!

Miss B to T-Man: "Why the heck are you smiling?!?"



Another legitimate sad face...Fearless cut his hand a little on something and no amount of band-aids, kisses, reassurances would make it better.  On a positive note, T-Man shaped up after the pinching moment.



And now she's outta there.

The End.

There's still a long way to go...but will we get the chance to go there?

Becca, over at The Bates Motel, posted about this article:

A New Down Syndrome Test Could Cut Healthy Baby Deaths

Just reading the headline makes me feel sick.  Where's the test that's going to cut the deaths of children with Down syndrome?  Because right now, there is AT LEAST a 93% abortion rate for babies that are prenatally diagnosed with Down syndrome.  I've even seen some articles claim that the rate is really 98%.  THAT, my friends, is a statistic that needs to be changed.

Buried in page 3 of the article, is this gem of a quote:

"We are saving babies," said Chui. "And just because we know the results doesn't mean women have to terminate. We are saving women from losing normal children just because of a procedure."

Gee thanks, Chui.  So after 2 1/2 pages of talking about how all the "normal" children will be protected...you finally mention that just because you will now know that your child has Down syndrome, you don't have to terminate.  But obviously you don't really believe that because in THE VERY NEXT SENTENCE you again mention that really, this test is just to "save" "normal" children.  The implication being that if, by chance, a procedure caused someone to lose a child that did have Down syndrome, so be it.  Ugh.

I realize that not everyone views this topic the same way that I do.  And I'm not trying to start a debate on abortion.  I'm just fed up with the way that the media, with the help of lots of people in the medical field, portray having a child with Down syndrome.  Are any of those people parents to a child with Down syndrome?  Who are they to portray abortion of a child with Down syndrome as the best option??  I can tell you now, that I have NEVER once regretted my decision to continue my pregnancy with Miss B.  Not then, not now, not ever. 

She is beautiful and perfect and radiates joy and light. 

Do we have hard days?  YES.  Having a child with special needs is not always easy--it is a different journey than the one with only typical children.  But IT IS A WONDERFUL JOURNEY.  It is a path on which I am grateful to be walking.  I NEEDED her to help me see how much I was missing out on before.  My eyes have been opened to the beauty of the world in a way that I would have never experienced without my little Miss Banana. 

Why does our society not value my daughter as much as the "typical" kids?  At times, I feel like we are making headway in our culture and that my child will be accepted and loved and valued...but then articles like this come up and I realize just how much further we have to go.

If more children with Down syndrome are prenatally diagnosed and then aborted...will society ever get the chance to see their true worth? 

If we practice this type of genetic genocide, will our society forever miss out on the rare magic that comes with an extra 21st chromosome?

Tempation

I'm pretty much a what-you-see-is-what-you-get kinda girl--which has its good points and its bad points...it does mean that I end up speaking my opinion (and probably irritating a lot of people) WAAY too often when really I should just keep my mouth shut, but it also means that I'm pretty open and honest.

Over the past few days though, I've been tempted to break that policy.  Let me explain:

In the past week there have been a plethora of people asking me how old Miss B is.  While that may seem like a fairly innocent and harmless question to most people...for Miss B, it's not.  It's complicated and anxiety provoking and makes me want fib a bit because she's not doing all the things a typical 18-month-old would do.

I was at the park the other day with Miss B and Fearless when a mom with 9-month old twins came up to me and asked if her sons could sit and play with Miss B.  She plopped them down next to her, and they were all about the same size.  They were doing about the same things--sitting, crawling, putting leaves in their mouths...Miss B was a little more social and wanted the boys to play with her...but at first glance, you would have thought they were all the same age.  While making small talk, the mom asked how old Miss B was.  I paused for a minute, considering.

Should I tell the truth? or fudge a little bit?...or maybe I should just say "One" and leave it at that...or maybe I could say "her birthday is in April" or maybe I should just say it like I did with the boys and say how many months she is...

I eventually decided on the last option due to my desire to try raise Miss B just like my other kids as much as possible.

After what was probably a longer than socially acceptable pause for such a simple question, I finally busted out with "18 months" and she started eyeing Miss B a little more closely.  In fact, she gave her the full on, up-and-down eye sweep.  And then after another 30 seconds or so, she picked up her twins and moved a few feet away.  There was no specific reason that I could see to move her kids away...and it wasn't like they went that far...maybe the mom was just tired of my small-talk but it seemed odd that our little spot was no longer suitable so soon after I stated Miss B's age.  I tried to brush it off, thinking that I'm probably just over sensitive.

But then it happened again while we were at the pumpkin patch yesterday.  Miss B was playing happily in the corn box (cute pictures to come later!) when another mom started smiling at her and saying how cute she was...and the she asked how old she was.  When I said "18 months" (still determined to do it the same as I did with T-Man and Fearless) the mom gave Miss B the same scrutinizing gaze that makes me want to grab Miss B and hide her behind me.  All the smiling, cooing, admiring was gone and replaced with a piercing stare.  End of conversation.

And then it happened at the grocery store.

And then it happened on the soccer fields.

And I'm sure it will happen again.

I'm also pretty sure that if I just said she was a bit younger, we would avoid the staring.  But Miss Banana IS 18 months old.  And she is doing a zillion great things.  So why should I have to lie about her age to avoid people's stares?

And why do I care if people stare?  Why am I even tempted to lie about a silly thing like her age?  Miss B is an amazing little girl and if people can't handle that she's not walking or talking like her typical peers, that's their problem. 

Part of the problem is that I need to be better about not caring about what other people think.  I don't usually care what people think when it relates to myself, but for my children?  That's hard.  Especially when Miss B has done nothing except have an extra chromosome to draw people's stares.

I have the feeling that in the long run, the stares aren't going to go away and we will all just have to get used to it.  Maybe someday I'll get to that point.  Not there yet though.

Brave Feet

This morning (and just about every Sunday morning), Dr. C had some early meetings at church, so I was in charge of getting all three kids ready for church and out the door by 8:30AM.  For some reason, this feat is next to impossible for me, despite the fact that I started at 6:30AM.  I think in the three months that I've been doing Sunday mornings on my own, we've made it there before church started maybe twice.  Not a great record.  I'm still trying though!

Anyway, this morning I was trying to hurry and I was scolding encouraging the boys to get their Sunday clothes on--a process that takes infinitely longer than putting on regular clothes.  I got them to a point where I thought they could handle the rest on their own, and headed to the kitchen to make our lunches.  (We live 25 minutes from the church, and church is 3 hours long, so by the time we get done at noon, the kids are starving!  So we eat lunch on the 25 minute drive home.  That way we all get to take Sunday afternoon naps--one of my favorite things!)

The boys were in the living room, slowly finishing up.  All of the sudden, Fearless started wailing about his socks being "too tickly" and that he couldn't wear them.  T-Man was blessedly finished getting dressed, so I asked him to help Fearless while I finished the lunches.  From the kitchen, I overheard this conversation:

T-Man: Here, put on your socks.
Fearless: (sobbing) It's tooooo TICKLY!!
T-Man: (patiently) Okay, which foot is your brave foot?
Fearless: (stops crying) Um, this one.
T-Man: Well, it's not being very brave right now.  It needs to wear the sock.
Fearless: Okay.

And then, silence--no crying, no whining, no complaining...just silence.  During which time, T-Man helped Fearless put on both socks, then the shoes, and even tied the laces for him.

Sure wish I had thought of that.

And Then There's a Rainbow

Last week was a hard week.  Dr. C was out of town; we had the toilet episode, then the faucet on one of the bathroom sinks broke, then the air conditioner in my van broke during a solid week of 100+ degree heat index days, then the dryer (that was already taking bites out of our clothes) started squeaking in that make-dogs-go-crazy way.  Then the phone company and the Internet company had some miscommunication and turned off our phone service.  Then I hit the wall for the first time running.  Needless to say, it was not a pretty week.

Sometimes I think it takes those low weeks for me to recognize all of the good things that I have going. 

One of my favorite hymns:

When upon life’s billows you are tempest-tossed,
When you are discouraged, thinking all is lost,
Count your many blessings; name them one by one,
And it will surprise you what the Lord has done.

Now I don't think that last week counts as being "upon life's billows" because we've certainly had harder weeks than that one.  But when something seems to go wrong everyday, my usually-sunny disposition gets overrun by dark thunder clouds of grumpiness.  Ironically, the weather the past few days has seemed to mirror my mood.

But then the other night we were driving home in the rain with the windows rolled down (no air conditioning!) and the rain cooled things off a few degrees.  Grateful for some relief, I could feel my irritability lessen a little.  And then T-Man yelled from the back seat that he saw a rainbow.

A rainbow.  One of nature's simple, beautiful phenomenon.  A flash of color over a dismal gray sky.  A small reminder that the gray doesn't last forever and there are wonderful things just around the corner.

In an instant, as I appreciated the wonder of the rainbow and heard my children oooh and aahh over the beauty of the colors, my grumpy clouds started to disperse and life was good again.

To top it off, Dr. C has returned and has been fulfilling his role as my knight in shining armor.  He fixed the faucet, restored our phone service, figured out what was wrong with the dryer (waiting on a part to get it totally fixed) and the van will be fixed hopefully by the end of the day today.  I love that man.

Today, I am thankful for rainbows--the ones that show up in the sky after rain and for the people around me that break through my grumpiness and remind me that there is beauty ahead.

Hitting The Wall

From Running Planet:

"The wall is a somewhat intimidating term that is commonly used to describe the devastating feelings of fatigue and sometimes confusion that can occur in the final miles of a marathon. The wall is hard to describe to a non runner. It’s something that you need to experience to really understand. Jerome Drayton, winner of the 81st Boston Marathon, said it best: “To describe the agony of a marathon to someone who’s never run it is like trying to explain color to someone who was born blind.”

I hit the wall this week.

Saturday, my SweatSister and I were up for doing a long run in our marathon training--20 Miles.

Last week, we did 18, and I was tired and sore afterwards, but it was a good run and by the end of the day, I was feeling good.

This week...not so much.  Originally, we had planned to have this week be a short recovery week with next week being the long run.  But my SweatSister's hubby was going to be out of town so on Thursday we decided to move the long run up a week to Saturday so we could run together.

I think I must have gotten a little over-confident after our good 18 miler, so I didn't mentally prepare for 20 miles.  And I didn't eat well.  Or drink well.  Or sleep well.

So pretty much I just assumed I could just hop out of bed and run 20 miles...no big deal.

HA! 

The first 10 miles were fairly uneventful (except for the big dogs that wanted to chase us.)

I did okay for miles 11, 12, 13.

But by mile 14, I starting to feel pretty crummy.  Our pace started to slow...and slowed...and slowed till we trudged into our water stop at mile 15.

All confidence went out the window.  All desire to keep running was also out the window.  Negative thoughts crept in: Why the heck was I out running 20 miles in 100+ degrees in the South on a Saturday morning?!?  THIS IS CRAZY!!!

We limped along through miles 16 and 17.

One foot.  Other foot.  One foot.  Other foot.

At this point, I was not quite coherent and I honestly couldn't even think "left foot, right foot".  It was more like "move that thing that feels like lead and then move that other one."  My vision starting getting spotty and my hearing would come and go.

By mile 18, we did something I swore we wouldn't do.  We broke my number one long-distance running rule.

We walked.   (Oh the shame!!!)

And once that mental resolve was broken, we walked again.  And again.  And again.  Until we were running short spurts and walking longer distances.  In the end, we probably ended up walking a whole mile.  Ugh.

Side Note:  Any non-runners out there probably won't understand this perspective.  But to me, walking during a run is  a sign of weakness. A failure.  I can walk through water stations and of course take short breaks at designated stops, but to walk in between the predetermined distances just because I am feeling tired, is unacceptable. Please note that this is not a judgement on anyone else's exercise style or ability...there are lots of very good reasons for people to walk.  This is simply my personal standard for MYSELF.  Nothing more, nothing less.  For me, if I don't set this high of a standard for myself, I would walk ALL THE TIME and then never reach my goal of RUNNING a marathon.

It was miserable.  And disappointing.  And definitely put a damper on my enthusiasm for being able to run the 26.2 miles of our upcoming marathon.

We finally finished--stopping a little bit earlier than we usually do.  We were exhausted.  We were beaten.

We were humbled.

Lessons learned:

• Dehydration is not fun.  Make sure to drink plenty of water the day before.  (Duh.  I KNOW this, but chose not to follow it.  Not the brightest decision of my life.)
• Eat a good carbohydrate meal the night before.  Eating only a small ham sandwich on a white roll, 3 slices of cucumber, and a couple of pieces of broccoli at a party the night before a long run is a BAD, BAD idea.
• Stay humble.  Remember that I'm not hot stuff.  Even though I've been training consistently, I still have a lot to learn and a long way to go.  Maintaining a healthy respect for the long runs will make me mentally prepare better for the long haul so that I don't break my no-walking rule.  It will also force me to make sure I take care of myself physically so that I don't literally collapse from exhaustion and dehydration.

Now that I know what it feels like to "hit the wall", I am determined to avoid it as much as possible.  In 3 weeks we have a 21-mile run that will hopefully go much, much better than the 20-miler.  Wish us luck!

Who knows? and Who cares?

I think Miss B is getting to "that" age.  The age where she's not as much of a baby and people are starting to notice that she isn't doing the typical one year old things.  It seems like now that I say she is one, people are a little more cognizant that it isn't typical for her to still be riding around in her infant carseat. 

And after asking how old she is, the next question is ALWAYS about if she is  walking or not yet.  ALWAYS.  Really.  As soon as you say, "one year old" there is some sort of automatic conditioned response that leads people to say, "Is she walking yet?"  As if walking is the only hallmark of being one.  Forget about talking, signing, eating table foods, getting into cupboards, loving to read books, etc...no one cares about anything except that ONE gross motor skill.  But I digress...

Anyway, I have had a string of events recently that have made me wonder who knows that Miss B has Down syndrome and who doesn't.

The first event came when I was talking with some people from church.  I said something about Down syndrome, and a lady that sees Miss Bannana EVERY week--and holds her often--looked at me, bewildered, and said, "oh, do you know someone with Down syndrome?"  Um, yeah.  MY DAUGHTER.  It made me laugh because obviously she had no idea.  Who would have thought someone that has seen her consistently for months would have no clue?

The very next day, I took Miss B to a doctor's appointment and the nurse told me that she wasn't sure that Miss B had Down syndrome or not--she had to check her chart to find out.

Right after that appointment, I ran to the store, and as I was checking out, the cashier girl told me she has a sister that is 15.  And me, not connecting the dots, thought: that's-great-why-is-this-girl-talking-to-me-about-a-random-sister-I-just-want-to-pay-for-my-stuff-and-get-out-of-here! And then she was asking me all sorts of questions about Miss B, which I thought was a little odd...(And I STILL wasn't connecting the dots!)  Until she asked if we had gone to the BuddyWalk in the fall.  Then it dawned on me that this girl had instantly known that Miss B has Down syndrome because her sister has Down syndrome and that we were part of the same club.  I sure wish I had clued in earlier--I would have chatted more!

My point is--some people know right away.  Some people aren't going to know at all.  Some people will wonder (especially now that she is getting older) but won't be sure.   And each of those things is OKAY. 

Because Miss Banana has Down syndrome.  It is part of who she is.  It is part of who we are as a family. 

But just PART. 

People can get to know us because of that part (like the connection with the cashier girl).  They can get to know us without it (like the lady from church).  Or they can wonder and ask questions about it--or not.

We love our Miss Banana for who she is--ALL of who she is--and if other people know or don't know about her having Down syndrome so be it.  She's perfect either way.

Medical Adventures with Miss Banana: Panic, Blessings, and Introducing Dr. Guts

On Wednesday, I took Miss B to The BIG City to see Dr. TennHearts and the new doc in Miss B's life, Dr. Guts.

At our last appointment with Dr. TennHearts in The City at his clinic for those of us that live in The Village, he had noticed the hole in her atria that Dr. HeartSurgeon had put in (on purpose) during her heart surgery. He wanted to close the hole through a catheterization procedure because he thought too much blood was short-circuiting the heart through it. He had wanted to just go ahead and schedule the procedure instead of another check-up, but when I told him that we would be in The BIG City to see Dr. Guts, he decided to do one more check-up at his office with the BIG City equipment, which I'm pretty sure is more advanced than most medical equipment where we live.

Miss B had a fever the day before, but we have been waiting almost 4 months to see Dr. Guts and there was no way we were skipping the appointment!

The BIG City is about 3 hours away, so Miss B and left at 6:45AM to make it to Dr. TennHearts appt at 10. Poor Miss B slept the whole way and when we arrived, she obviously didn't feel good. The nurse took her temp (100.9F) and her respiration rate was super fast. But, being the heart doctors, they told me I would have to take her to the ER to get it figured out! Seriously??? We were in a room with 2 doctors and 3 nurses and NONE of them can tell me what is wrong with her? Ridiculous.

Anyway, they went ahead with the heart appointment. Dr. TennHearts walked into the room and said, "We are going to look at her heart today to see if we can fix the hole between her atria through catheterization or if we are going to have to open heart surgery again."

CUE PANIC

Wait a minute! Open heart surgery AGAIN?? WHAT?!?!?? We had talked about the catheterization before, but OPEN HEART SURGERY?!?


I don't think there are very many phrases in the English language that can strike fear in me like the phrase "open heart surgery" can.

The room started spinning and it was just about all I could do to keep from fainting.


I know that sounds overly dramatic, but for those of you who have had a child go through open heart surgery, I'm sure you can understand. For those of you who haven't....I hope that you never know. It's not something that I would want any child or parent to have to go through.


Miss B and I headed to the echo cardiogram room--where Miss B did a fabulous job. I think it helped that she felt like crap, because she actually fell asleep during it! Because she was so still, the tech got to spend a lot of time getting really good pictures of her heart.

The whole time I was silently praying that we wouldn't have to do open heart surgery, that the hole could be fixed with the catheter procedure.

We walked back to Dr. TennHearts' office for another wait. I paced the room--Miss B had fallen asleep again on my shoulder. 

Please don't need heart surgery again. Please. Please. Please.

Dr. TennHearts walked in and I braced myself for the worst.


"Good news. We got a really good look at her heart today. The hole is very small. And I think we should just leave it alone entirely. See you in six months."

CUE RELIEF

If I hadn't been so elated about the good news, I think I would have chewed him out for scaring the crap out of me.

I left the appointment with a still sick baby, but feeling very blessed. If she hadn't been sick and laying so still, they might not have gotten a good look at her heart. If we hadn't come all the way to The BIG City for her appointment, and just relied on the info from the equipment in The City, we would have unnecessarily messed with her heart. And possibly taken her into OPEN HEART SURGERY for NO REASON.


The idea of open heart surgery is horrible on its own...but to do open heart surgery unnecessarily?? (Shudder)...I don't even want to think about it.

In a daze, I picked up some Motrin for Miss B at the pharmacy--which helped tremendously.

After that wild ride, our appointment with Dr. Guts was rather uneventful--just a lot of questions about the ins and outs of Miss B. (haha-pun intended.) We scheduled a swallow study for her to make sure she isn't aspirating. We'll see how that goes.


The End.

(Anti-climactic, I know. But I would MUCH MUCH rather have her medical episodes be anti-climactic instead of being nail-biters.)

Stay tuned...this week Miss B heads to Dr. Ears.

P.S. Miss B (and T-Man) are still sick. We saw Dr. SouthernKids on Friday, so now they are on various meds that should make them feel good. The jury is still out on that. I think they are doing better, just not totally fabulous yet.

It's Time To Think Big

I'll get back to our Spring Break Recap sometime soon (you all really do have to see the cute shirts/dresses that my sister and I made for our kiddos...and now I know how to applique! woot!)

But I have to admit that I've been having some what of a pity-party for myself. It's those darn comparisons that do it--and no, I have not been comparing Miss B to anyone--I've actually been comparing ME to other moms. And not just your typical mom...other moms whose kids have Down syndrome too. And whenever I compare, I always come up short in the "doing it right" category. Or in the "I wish I was doing that" category or the "how come I don't have that?" category. And I look at my life and think "why does it have to be hard??" Ugh. All the comparisons put me on the 5 o'clock Express Train to Pity-Party Central.

And honestly, Pity-Party Central stinks.  It's a miserable, lonely place. 

As I read other people's blogs...I have been completely jealous of the playgroups and support groups that other people have--while I don't even have ONE friend that has a child with special needs...(although Addy is working on it!!) and I KNOW that there HAS TO BE other kids with Down syndrome around here...somewhere. Miss B's various therapist have mentioned 2 kiddos that are just about Miss B's age...and I have given the therapists my info to give to those moms, but no response. Maybe they don't need a friend as much as I do??

And then the other night on the soccer fields, I saw a little boy, about 7 or 8, that had Down syndrome...but he wasn't anywhere near any adults--and I thought he might think it was a little strange for some random lady to start talking to him...plus Fearless was about to wet his pants, so we just kept walking.   And so the pity party continued...

And then I went to that reception for World Down Syndrome Day that our nearest support group put on--a group that is centered in a town that is over an hour away from us.  All the people there live in The City.  And we live in The Village.  So while everyone else was talking about their latest playgroup or comparing notes on different therapists...they would occasionally ask us where we are from.  Or how old our daughter is.  You know, the polite-get-to-know-you questions that everyone asks.  The same questions the same people asked us last time we went to an event.  In other words, they don't know us and when they only see us once every 4 or 5 months, they aren't going to get to know us.  It stinks to not even fit in with people who know!

I hate Pity-Party Central.  It doesn't flow with my general disposition.  I LIKE to be happy.  And happiness is a choice.  No one, but me, can decide if I am going to be happy or not.

So it's time to take a trip to The Land of Thinking Big.  The place where if I don't like what is happening (or not happening) in my life...I change it.  The place where I get up and grow up and DO something about it.
 
So wish me luck as I try to start a support group in our Village and the two other villages around us.  I don't know what this will entail, but I refuse to accept the fact that I am the only mom around here that needs other moms in The Club.  No longer will I allow myself to feel isolated and sorry for myself that there is not a local support group here.  No longer will I bemoan the fact that life is hard. 
 
Because I can do hard things.
 
Goodbye Pity-Party Central, I won't be visiting again.

The Exciting Conclusion to Mission: Impossible

In case you missed it, here are the highlights from last week's installment of Mission: Impossible--

• 2 sets of medical records needed to be faxed from NE to Dr. TennesseeHearts
• 10 phone calls
• One promise to send records made
• One refusal to send records made
• One voicemail saying that denied records were actually going to be sent to me

And now you're up to speed!

After all the phone calls, I remembered that Miss B's service coordinator from NE had sent us some of the hospital records, so I decided to take those with me, hoping they would be right.

Amazingly, some records from Children's Hospital that I didn't have were, in fact, delivered to my home on Monday.  Funny thing though, they also included someone else's registration for their insurance wellness program.  It kind of looks like whoever jotted down my new address on the back of these forms and just threw them all into the envelope by mistake.  Slightly ironic that I had to pull teeth to get MY OWN DAUGHTER'S records and yet I had to do nothing to get some random person's wellness information.  I'm sure the HIPAA people would love that.

I took the whole stack of records to Dr. TennHearts.  Once there, I asked to make sure that the records that Dr. Heart in NE promised to send were there.  And....a big fat NO on that one.  I'm not sure if they just never made it out of Dr. Heart's office or if they just stayed in Dr. TennHeart's home office instead of coming to The City with him...but either way, the ONE set of records that I was counting on being there, were gone.  I shouldn't have been surprised!

I finally hand the stack of records I had over to the nurse for them to make copies.  Dr. TennHearts flipped through the stack, picked out THREE PIECES OF PAPER to be copied, smiled and said, "that's all I need."

Are you kidding me?  I spent over 2-3 hours trying to track down all the papers and ensure that he had them all--and he only needed THREE papers that had been sitting on my bookshelf the whole time.  He should have at least given me a golden star for effort or something.

Three pieces of paper. 

That's it. 

Go Figure.

So I still don't have thick skin

On Facebook, a teenager that I know used the r-word.  I probably should have let it go, but I promised Miss B that I would stick up for her, so I just had to say something.  While most people that I know have been kind and understanding about ending the use of the r-word, this young man didn't.  Here's the exchange: (I took out the names, the rest is verbatim)

Me: r*tard is a super offensive word, just as bad as the n-word. If you wouldn't use it, that would be great!
Teenager: Only r*tards are offended by the word r*tard

(At this point, I kind of snapped.  I shouldn't have, especially realizing the source, but I haven't developed a thick skin yet.)

Me: what a very insensitve, inconsiderate response. I thought higher of you than that.
Seeing how my daughter has Down syndrome and will be medically diagnosed with mental retardation, I find it highly offensive for you to use the word "r*tard" to refer to anything you don't like or that you think is stupid b/c really, you are making fun of my daughter and other people that have a similar diagnosis, and I'm not okay with that.

The way I see it, only people with low emotional IQs, would continue to use a word that someone has told them is offensive and has asked them nicely to stop. Because my daughter is unable to advocate for herself at this time, I will have to do it for her. Last time I checked, my IQ was well into the 140s, which doesn't really qualify me in the "mentally retarded" range....

If your earlier post was an attempt to try to defend your use of that word, please come up with a better response.

Teenager:  To be offended is a choice. It is a choice made by the person that has decided to take offense. And, according to one of the previous latter-day prophets, (I don't remember which one but I can find it if you REALLY CARE that much) taking offense to something is the result of a LACK of spiritual influence.
Me: Nice dodge, but still no good defense of the use of the r-word now that you know that it shouldn't be used.
Teenager: "dodge" ? What am I supposed to be dodging?

Trying to stop others from saying the word "r*tard" is like trying to tell someone to not say the word "tree" simply because you had a tree once that you liked and it died or something so if someone talks about trees you get sad. Sounds stupid huh? Maybe not, since you're doing it.

Also, there's no reason that I SHOULD be having to defend saying "r*tard". It's common english slang. Deal with it.

Me: Wow. Your lack of consideration for others is astounding. Unbelievable.
Teenager: Your lack of seeing this as something worthless to throw a fit over is also.

I am so furious right now, I am shaking.  Is this really what the teenagers of today think???  Does my daughter really have to grow up with people that have such a complete lack of compassion???  Someone reassure me that advocacy efforts will pay off and that the world will be a better place someday.

**Update: So he did go back and delete the "only r*tards are offended by the word r*tard" so maybe he eventully realized how extremely offensive that was?

Mission: Impossible

Your mission, should you chose to accept it, is to make sure Miss Banana's medical records from all the various doctors in Nebraska make it to the new Dr. TennesseeHearts.


Phone Call #1 to Dr. SouthernKids Office
I called Dr. SouthernKids' office this morning to find out more about Dr. TennHearts and to schedule the missed 9-month checkup.  We schedule the check-up for Feb. 1st, but Dr. SouthernKids' receptionist has no idea who Dr. TennHearts is and transfers me to the nurse's voicemail.  I leave a message and wait.

Fifeteen minutes later (faster then expected) the nurse calls:

Phone Call #2 from Dr. SouthernKids' Office
Nurse: You'll have to call the 1-800 number. 
Me: Ok, can you tell me where I need to go for the appointment?
Nurse: No.  Just that it's in The City.
Me: Ok, can I get the doctor's first name?
Nurse: I'm not sure what it is, you'll have to call the 1-800 number.
Me: Fine.

Hang up phone, set it down, feed Miss Banana two more bites of breakfast.

Phone Call #3 from Dr. SouthernKids's Office

Nurse: That might not be the right number, try this one instead.
Me: Oookkayy. (Praying that Dr. TennHearts actually exists and that the appointment I have been waiting 4 months for will actually occur and once again doubting the competancy of the medical staff here.)

Phone Call #4 to Dr. TennHearts:
Automated System--lists the names of cities that Dr. TennHearts visits--The City I was told to go to is not listed.  Great.

Push 1.  Push 5. Push 0.  Listen to elevator music and commercials about how wonderful Dr. TennHearts' hospital is.  Push 0 again.  Finally, a real person.

Me: Does Dr. TennHearts' have a clinic in The City?
Lady: um, I don't know, let me check (more elevator music)
Lady: How do you spell that?
Me: T-H-E-C-I-T-Y (panicking...Miss B REALLY REALLY needs to go back to a Heart Doctor, please let this appointment be real!)
Lady: One moment.  (more elevator music)

Lady: Yes.  Dr. TennHearts goes there once a month. (Relief!) You need to have Miss B's medical records sent to the home office so Dr. TennHearts will know all the medical history before the appointment.
Me: Which ones?
Lady: All of them.

Phone Call #5 to Dr. Heart in Nebraska
This was definately the best call of the morning--I said who I was, the receptionist remembered me, remembered Miss B and even remembered where we moved too.  I was impressed.  I gave her the fax number and other info, asked her to make a special note on the cover sheet about Miss B being seen in The City instead of the home office.  She said she would have it there within the half-hour.

I love the people in that office!

Phone Call #6 to Dr. HeartSurgeon in Nebraska

Me: I need Miss B's medical records sent to Dr. TennHearts.
Receptionist: You need to talk to the hospital, not our office.

Phone Call #7 to Children's Hospital
Me: I need Miss B's medical records sent to Dr. TennHearts
Receptionist: You need to talk to Dr. HeartSuregeon's office.
Me: I just did, they said to talk to you.
Receptionist: Well, they shouldn't have.  I guess I can send you what I have, but if you want it all,  you'll have to talk to Medical Records.

Phone Call #8 to Children's Hospital Medical Records
Me: I need Miss B's medical records sent to Dr. TennHearts.
Receptionist: I can't give you those.
Me: I don't want them; I want them sent to Dr. TennHearts.
Receptionist: The nurse has to call and request them, I can't send them just because you ask.  We keep those records private.
Me: (Losing patience) Um, they are MY daughter's records.  Can't I choose where they get sent?
Receptionist: No.  The doctor has request them.  
Me: FINE.

Phone Call #9 to Dr. TennHearts

Push 1. Push 5. Push 0. Listen to elevator music and commercials about how wonderful Dr. TennHearts' hospital is. Push 0 again. Finally, a real person.

Me: I need you to request the records, they won't send them simply because I ask.
Receptionist:  We can't make a request until we have all of your information.
Me: Ooookkay...(gives physical address, mailing address, insurance info, SSN, phone numbers, Dr. C's SSN, Dr. C's work #, Dr. C's work address (??? why do they need that??), Dr. HeartSurgeon's office and fax #'s, Dr. Heart's office and fax#'s, Children's Hospital office/fax #'s, etc.)
Receptionist: Okay, I'll leave a message for the nurse to take care of it.
Me: (Grateful.) Thank you.

At this point, after all the phone calls and hold music and run around, Miss B has been in her high chair eating breakfast for about an hour and fifeteen minutes.  I get her out, get the kiddos dressed and leave to run errands.

Phone Call #10 from Dr. TennHeart's Office, on voicemail
Nurse: I called Children's Hospital to request the records, but a receptionist named Bev said she has already printed them off and is mailing them to you, so they won't fax them since she has already printed them off.  So just bring those with you to the appointment next week and that should be fine.  Thanks!

What the Heck???  I have no idea who "Bev" is and why is she sending them to me after being told that I couldn't have them???   And I didn't give "Bev" our new address, which means that Miss B's records will be sent to our Nebraska address and then forwarded to us down here--so who knows if they will get here in time (or at all???) for the appointment next week.

So will Miss B's records be here or in The City next week?  Will I have to make another zillion phone calls and not actually accomplish anything?

Tune in next week for the exciting conclusion to Mission: Impossible.