Just another week in...well, you know the rest.

Per usual, Tessie Toodles has thrown a few curveballs our way this past week. Seriously, I cannot remember the last time a full week has gone by in which I was able to just sit back, look at Tess, and feel like things were okay. I'm not saying this to whine or anything, it's just a matter of fact. The kid likes to keep me on my toes.

And we have the big, huge, panic-inducing, double hip surgery looming in the near future and as you may recall from my previous post, I was told to keep Tess well by a nurse at Children's Hospital.

Okay. Keep medically fragile child well. I'm on it.

And I have been on it. There is basically a "no fly zone" around Tess that no one, other than her nurse, therapists, dad, me and her sisters are allowed to enter. As in, I shriek like a crazy woman at anyone who even, ever so slightly, crosses those borders, "DON'T TOUCH HER!" Because I'm a caring mother. Or just a harpy shrew. Either way, it's an effective, if not slightly annoying, strategy.

Even when Blake came home for college, with a cold no less,  to celebrate her 19th birthday, I showed no mercy as far as the rules went. Yes, she is a sister so the rules are a bit more flexible BUT, not when that sister has a cold. And also has a boyfriend with a cold. Funny how that always seems to happen, isn't it?

But I digress.

Blake had to wear a mask and so didn't Bobby. At least they were really good sports about it because they love Tessie.

                 Wizards in Masks! Beware the germs!

 Tessie giving Blake the present she got for her (a Gryffindor t-shirt)



And me, being the awesome mom and total Harry Potter geek (just like Blake) that I am,  had a lady who also lives on the island make her a Harry Potter cake. And holy cake, Batman! This was a work of art. We actually hated to cut into it but you know, we forced ourselves for the sake of not wanting to waste all that cake. And the Hedwig? Hedwig was made out of Rice Krispie treats. *Drool*   Here's a photo because words cannot articulate the awesomeness that was this cake.

               Cake by Cathy of Cathy's Comfort Creations



So we got through the weekend and Tessie never caught their colds. On Monday Sheila came and noticed a loose tooth which I had also noticed over the weekend. I did not, however, notice how loose it actually was. As she was changing Tessie's diaper I heard, "Joanna, come in here please." Of course when I hear that I always assume Tess is seizing but when I went into her room and got close to the changing table I saw blood on a piece of paper towel. Um, eww. Sheila was working on getting that tooth out and needed my help holding Tessie's head still. *side note: We have to be aggressive with getting out loose teeth in Tess because if we wait for it to get loose enough to fall out on it's own, chances are Tess would aspirate it into her lung and wind up with a nasty pneumonia.* Anyway, I tried. Really I did. But there is just something about loose teeth that totally grosses me out and add the blood and well, let's just say I was not very helpful. Luckily enough, the hubby was home and came in to rescue me, er, I mean, Tess. But here's the thing, he also has a pretty weak stomach and just as we were both at our wit's end with the whole pulling out the tooth business, bam, it was out! Charlie and I both got out of there like our asses were on fire and left Sheila, and well, Tess to fend for themselves and put pressure on the hole where the tooth had been so the bleeding would stop. Yes, I know, Sheila is so lucky to get to work in this house with awesome parents like us.

Once Tess was all fixed up and I couldn't really see any blood, I got in her recliner and held her while she watched her movie. Basically, I ran from the problem and then swooped in to save her after it was all taken care of...by someone else.

But here's the thing, I KNOW my weaknesses and I embrace them. I can do any number of gross and disgusting things in order to help Tess but I also know what I CAN'T do and knowing your weakness is ultimately a strength. And yes, I am going to stick with that story.

Then, that evening, during yet another viewing of her movie, I noticed a little blood in her ear. Well, huh. I had Sheila come and take a peek and we decided to get out the otoscope to get a better look. "There's blood pooled in her ear.", Sheila told me as she handed me the otoscope to see for myself. Sure enough; blood. Ick. The really odd thing about this little trauma was that Tess has never, in all her medical crisis', had blood in her ear. I was freaked out! Sheila, while concerned, had a much more laid back approach. I insisted we call Jen anyway and she basically said everything Sheila had already told me which was there wasn't much we could do about it given it was night time and not exactly an emergency. I was reassured that if Tess seemed to be in pain or started to have other symptoms,  that Jen would come and check her out, otherwise we would see her first thing in the morning. And bonus, she would come to my house so we didn't have to get Tess up and out early.

Tess did fine throughout the night (the Tooth Fairy even made a visit) and when Jen came by the next morning she confirmed an ear infection with the possibility that Tess had a perforated ear drum which would explain the blood. She gave Tess a shot of antibiotic and, after listening to her lungs and discussing with me the high risk of Tess getting an infection in her lungs which would delay her surgery,  prescribed a ten day course of antibiotics.  I was actually very happy about that because Tess NEEDS this surgery and her pulmonologist at Children's is all set to put her on a strong antibiotic a week before surgery as a preventative measure so basically this means Tess will be on an antibiotic right up until surgery at this point. As Martha Stewart would say, "And that's a good thing."

                                       You said it, Martha!


Jen also booked Tess another appointment to be rechecked Friday (yesterday-and, once again came to my house so Tess wouldn't have to go to the medical center. I ask you, who else would make house calls?).  After checking out Tessie's ear, Sheila and Jen decided that it really needed to be flushed so Jen called the medical center to get Sheila the necessary supplies to flush Tessie's ear. After Jen left,  Sheila, myself, and Fay (Tessie's ed tech from school who is game for anything we throw her way) got Tessie's ear flushed and I am here to tell you, it hurt. The poor kid was crying real tears and Sheila, who loves Tess like her own, was beside herself and raced up to the medical center to get numbing drops to put in it. Once the drops took effect, Tessie happily watched her movie.

That has been this week. I am praying that this will be it until it's time to leave for Boston for Tessie's surgery. I think we have her as ready as we can health-wise. At this point, we are still titrating up on Tessie's seizure meds from when she was hospitalized for them last month (if we didn't get some control over them, the surgery would have been delayed). And dare I say it? Right now, the meds are working. Hallelujah! Of course she is now taking 29 pills a day to try to control the seizures. You read that correctly. This little, nine year old girl who weighs all of 54 pounds, takes 29 pills a day WHEN SHE IS HEALTHY.  This does not include her daily pain control meds for her hip or her antibiotics or her rescue seizure meds.

But....

I am not complaining, because when the seizures are absent, MY Tess is back. Back to being engaged in her life. Back to making her happy noises. Back to smiling and giggling and being happy. Just...back.  Aside from being extremely worried when her seizures get so bad, I really miss her when she is "gone" and man, oh man,  am I happy when I get her "back".

                      She's back! Now THAT'S MY Tessie!

I want to go to bed

I feel like a kid who is overtired, cranky and whiny. I want to kick my feet and throw myself down on the floor and and cry and basically have the ultimate little kid temper tantrum. Gross, runny, snotty nose included.

But I won't.

Because I have to be a grown up. Whether I like it or not. And right now, I can assure you, I do not like it. Not. one. bit.

In case you couldn't tell, today has really been a poopy one (yes I am purposely using the word poopy because I am still in little kid temper tantrum mode).

My day started with a phone call from Boston telling me that Tess could not get her botox injections due to her recent pneumonia. That's right. I found out TODAY, two days before the appointment, that because Tess had pneumonia within the past six weeks, she can no longer get the Botox injections that she was scheduled to get on Thursday after MONTHS of waiting, not to mention that she was diagnosed with pneumonia ten days ago and they got the doctor's notes in Boston right away so they must have KNOWN, not to mention they have already been rescheduled TWICE and her hip surgeon really wanted her to have it done prior to surgery. And let's not even get started on how it would have drastically helped to decrease the pain that she has been in for the past, oh, I don't know, ten months or so. 

This all led to the conversation of her surgery. "You need to keep her well", the nurse all but scolded me as if I have any real control over aspiration pneumonia. Now I will be a bundle of nerves if someone even sneezes within a five mile radius of Tess. I plan on building her her very own plastic  bubble out of Saran Wrap and Duct tape. Not sure how she will be able to breathe in it but at least no germs can get through if no air can, am I right? Can I get an "Amen!"? 

I'll make sure it's a Toy Story Bubble. Because I am a good mother like that.

Yes, I am kidding. And clearly going insane which I am willing to bet is more fun than being a responsible grown up.

Then there is the issue of one of her feet getting ice cold and turning a lovely, dusky color. How bizarre. No answer as to why this has been happening so a doppler study has been scheduled for both of her legs tomorrow in Boston to make sure her circulation is okay especially given that she has a major surgery coming up. 

Oh, and have I mentioned the small issue of her "slight heart arrhythmia" that was found after her most recent cardiology appointment? No? My bad. Yes the EKG showed a little blip that requires further testing so we just finished up a twenty four hour Holtor Monitor EKG test last night. I am Fed Ex-ing the results tomorrow.  The cardiologist isn't too worried and suspects that, per usual, it's just Tess being Tess.

My poopy day got even poopier when Tess started cycling in and out of seizures around two o'clock and didn't stop, despite all the meds I dumped into her little body, until nearly three. During this time I made a frantic phone call to Boston basically telling them that I would be there tomorrow for a different appointment so PLEASE PLEASE PLEASE fit Tess in for an appointment with her epilepsy specialist!

And like my very own fairy godmother ready to grant my wish, the nurse called me back and said the doctor wanted to fit her in.

One appointment granted.

                             *fairy dust*fairy dust*fairy dust*

Then she ordered more meds for me to give to Tess tonight, a "loading dose" they called it, along with directions to get her off the island if she seizes anymore tonight (uh-huh-no sweat-yeah right) and now we have to take the first boat rather than 8:45 in the morning in order to make it all work.

So for my next wish, Fairy Godmother...

Can today please be over with already? Pretty please with a cherry on top?


                                              

                       *fairy dust*fairy dust*fairy dust* 

Easter Stories

Today is Easter and it is the first "real" holiday that we haven't been able to celebrate in our traditional way. Not bad considering we live with a medically fragile kiddo.

On Friday, Tess started having what looked like petit mal seizures but they looked so totally different than I was used to seeing with her that I just didn't know for sure so I called Sheila. We Facetimed so she could watch Tess. She didn't like what she was seeing and called the pediatrician. She was instructed to tell me to go ahead and give Tess her rescue meds to try to stop the seizures.  When that didn't seem to stop them, I called her pediatrician back and was told to get her to the mainland on the next ferry. As I rushed to get ready, she finally fell into what looked like a comfortable sleep and since we were told we could stay home if she stopped, we didn't bother getting on that boat. However, she woke up around 3:50 and started in again with the weird twitches and jerks.  I debated about what the heck was going on with her and then, at 4:05pm decided that I did not want her on the island for the night. My Tessie radar was going off fairly loudly. So after rushing around like a maniac, we boarded the 4:30 (and last for the day) ferry to Rockland.

Yes, I am impressed that we actually made the boat in that short amount of time. I had to pack for myself and Tess and try to think of the possibilities:

Will she be admitted into the hospital?

Will we end up at Sheila's?

Will we get home tomorrow?

If not tomorrow, when?

How much clothing will she need?

How many diapers and wet wipes?

How much of her enteral food and supplies do I need to pack?

Grab extra oxygen for boat ride.

Grab oximeter and plug.

Don't forget daily meds in the pantry. 

Don't forget jump bag.

And for all that is holy, don't forget to bring Baby Tad!

The hubby kept asking me if I wanted him to come with me but I figured he was better off staying home because Ellie was there plus Blake was coming home on the last ferry from college for Easter and I didn't want her to come home to no parents around. 

So Tess and I rode the ferry. Alone. With her seizing. I will not make that mistake again.

For the hour and fifteen minutes we were on the boat, she seized. Small ones that cycled over and over and over again. 

Stressed? Yeah, you could say that.

I got off the ferry and drove straight to the ER where we met Sheila. The doctor agreed that it looked like she was in a seizure cycle and called the on-call pediatrician as well as Tessie's regular pediatrician. They were told to administer IV Ativan  which seemed to calm her down (and make her start giggling at LaLa Loopsy on TV). They then did a chest Xray that came back as "suspicious" for pneumonia so she got a shot of antibiotics. The hospital had no empty beds and the docs wanted her admitted so we spent the night in the ER and were moved to a room early the next morning.

                   Just chillin' out in the ER. No big whoop.

When Tess woke up the following morning, she started cycling back into seizures so more meds were given and we were told we would definitely be staying another night which meant we would not be getting home for Easter. 

When the girls found out we couldn't come home they offered to bring all the "Easter Bunny" supplies here so they could have their Easter baskets with Tess. Yup, my girls are awesome. 

They arrived this morning with the hubby, loaded down with Easter goodies that I had to get ready for them. After giving them strict "No Peeking" instructions, I laid everything out. Not exactly the pretty display that the Easter Bunny usually puts out for these girls but hey, it got the job done.

They dug into their loot, laughing at the tags still on everything and the way things were falling all over the place then they showed Tessie her stuff. Tess really didn't care and was basically very irritated that her movie got turned off so she could visit with her sisters. So she did what she does best when she is mad. She went to sleep. 

             Tessie is not impressed that her movie got turned off for this.

We were all sitting around discussing Blake's latest essay I had helped her with for a scholarship and then she asked if I would help her with her paper for her Lifespan Development Class. This paper was basically exactly what it sounds like it would be. An autobiography spanning Blake's life and development.  So we all got to telling our favorite stories about when the girls were little and man oh man, the things you remember that you had sort of forgotten about. For example her fascination with The Lord of the Dance when she was three and her total obsession with carrying around a small Bible in a purple, velvet Crown Royal Bag when she was about four. Then there was Ellie who used to dress up EVERY DAY in a Belle costume complete with tiara and scepter and wear it downtown and when people would tell her she looked pretty, she would reply with, "I know."  Needless to say, we had lots and lots of laughs. 

                           We're ready for our closeup, Mr. DeMille.

And after they left I was thinking. Would we have talked like that if we had been home? Just spent time hanging out with only the five of us, enjoying each other's company and telling funny stories about the girls? I don't think so. Between laptops, boyfriends, TV, work, and just life in general, we would have done our usual Easter morning but then probably have sort of broken off into different parts of the house until it was time for dinner. 

So you know what? THIS Easter? This HOSPITAL Easter? Crazily enough, it was a happy one. 

The Thief

I am a thief.


I can steal your independence.

I can steal your ability to learn.

I can take possession of your brain and not let it go until I am good and ready.

I can steal your courage.

I can steal your dignity.

I can steal your joy.

I can steal your baby, your mother, your father, your sister, your brother; even you. Whoever I want, whenever I want, and make them mine.

I do not care about your age, your race or your religious beliefs.

I can steal your "normal" and replace it with complete and total chaos without warning. 

I can steal your life.

I am one of your worst nightmares. 

I am Epilepsy. 

How three days of appointments turns into five days away from home

As previously mentioned in my last post, Tess was given two possible dates for her bilateral hip surgery. Either May 16th or June 25th. As it turns out, it will happen on neither of those days. I got the call from the OR scheduler last week that she has a definite surgery date set for May 14th.

Gulp.

In order for her to proceed with the surgery, Tess needs to be given the green light from the rest of her "team" of specialists, which basically means they have to agree she can physically handle such a major (6-8hrs) surgery. Which means they all need to see her, which means many, many appointments in Boston.

This coming Wednesday she is scheduled to see pulmonology. This will be a new doc for us at Children's because her past pulmonologist was at Maine Medical Center so I am not sure what to expect for this appointment. I'm guessing chest x-rays are a real possibility.

After that appointment we are scheduled for cardiology which includes an EKG as well as a "tentative" echocardiogram because her heart rate has been noted to be a tad jumpy and irregular. She also has been known to suddenly just look terrible and break out in a cold sweat and be all cold and clammy as if she's had a sudden drop in blood pressure. In fact, for years her dad and I had mentioned to many different doctors that we thought she needed to see a cardiologist with all of them basically shrugging off our concerns by saying things like, "Kids like Tess tend to do their own thing. Their bodies just don't regulate themselves like ours do."

Really? I hadn't noticed.

Even after the nurses at Children's Hospital had mentioned it to the doctors because they had noticed the odd fluctuations when monitoring her during some of our stays as an inpatient and also thought it was a little abnormal. Even after her pediatrician finally agreed with me that maybe it was time to see a cardiologist down there and made the call himself to talk with her developmental pediatrician at Children's to express his concerns. Still it was ignored.

Well, I am here to tell you that I am willing to let things go for only so long and I can promise you, when my baby is facing such a huge surgery and I am not convinced her heart is up for it, I am not going to let it be shrugged off any longer.

So I made the call myself. And got blown off.

Oh, no you didn't! (insert finger snap and head weave here)

I decided it was time for that grumpy old beast "Mama Bear" to make herself known.

I called again and might have, somewhat angrily, told the developmental pediatrician's nurse something along the lines of, "Her father and I have requested an appointment with a cardiologist for years and we've gotten nowhere. Her pediatrician in Maine agreed with us that she should see a cardiologist and still Dr. M (her pediatrician at Children's) didn't feel it was necessary. Now Tess is getting ready to undergo a major operation and Dr. M still doesn't think it's of any concern?! Okay then, here's the deal. You tell her I said that I want a signed note from her stating that I repeatedly asked for a cardio appointment prior to surgery and that SHE denied my request and that she can personally guarantee that Tess's heart will withstand the surgery with no problems whatsoever!"

The appointment was made later that day along with the EKG and ECHO.

That Mama Bear can be a real b*$%#, can't she? An effective one though.

But I digress.

As I was saying, her appointments are on Wednesday, Thursday and Friday. I have "karate chopped my way to a better price" and booked us a room for two nights in Boston.

I just checked the weather forecast and guess what? There is a snow storm heading our way. On Tuesday. As in, the day I had planned to leave the island. Did I mention the wind is supposed to blow really hard as well? Because it is. Making the ferry trip very undesirable if it even runs.

I had originally thought we might try to leave on the 7:00am ferry on Wednesday which would put us on the mainland around 8:15 and allow us just enough time to make the first appointment in Boston at 12:30. That is if the first boat runs. And Tess doesn't have a seizure on the way. And there is no traffic.

So yeah, Tuesday ended up being the day to leave based on all the above variables possibly coming into play on Wednesday. And now a storm. Are you freaking kidding me, Mother Nature???

My new, revised plan, is to leave tomorrow. Get as far as Biddeford and bunk in with our beloved nurse Sheila and Tessie's, excuse me, I meant, Sheila's, boyfriend for a couple of nights in order to get ahead of the bad weather and insure our safe and timely arrival in Boston on Wednesday. I guess I should call and let her know that, shouldn't I?

And that, my friends, is how three days of appointments turns into five days away from home.

Ain't nobody got time for that!

It has been quite the week here at Casa de Reidy.

Let me sum it up for you:

Tess had a a seizure. Wait, let me rephrase that. Tess had a fourteen minute seizure, then had about eight or nine smaller seizures over a twenty-six minute period which prompted an emergency call to her pediatrician who asked me, "How hard will it be to get her off the island?" I responded with, "Well, kind of hard. The last ferry left about fifteen minutes ago, but it's a nice night." My last comment clearly confused the poor man who sort of laughed and said, "A nice night? Are you planning to swim across?" Love a doc with a good sense of humor. So I explained that in "island terms", referring to the weather as "nice" simply meant that we still had other ways to get Tess off the island if need be. Plane, lobster boat, or God forbid, Lifeflight.

Long story short, the meds finally did their job and she stopped seizing while the doc and I were discussing what to do next.

Phew! Another crisis narrowly averted.

Next in line in the Week O'Crap:

My laptop crashed. Just...boom. Gone. Only a creepy grey screen with a confused little question mark blinkety blink blinking on the desktop. My beloved, less than three years old MacBook Pro was gasping for breath.

Now, everyone who knows me knows, I LOVE my laptop. I am on it way too much (but that is a problem for another day) and I just panicked. All my hubby's business information is on that laptop. All of our last three years of photos. A lot of important documents. My one saving grace is that our local, awesome (hero in this story) computer tech (and high school computer teacher) had convinced me when I got the laptop to always back up to an external hard drive when I do the hubby's books. And I faithfully did. Thank you, God. Then I wrapped up my poor, sick little Macbook in it's little carrying case and handed it over to my computer doctor with a whimper on my lips and a tear in my heart.

He valiantly tried to breathe life back into it and even managed to revive it and hand it over to me...with nary a program or photo lost. As my fingertips danced over the keyboard and the screen came to life, I was so happy. We were back together. Reunited and it felt so good. Then, an hour later, my laptop gasped it last breath and died.  The computer doc is coming over again today for a last ditch effort at saving it.

Say a little prayer for my poor laptop, won't you?

So, just about the time I was thinking to myself, "This week has sort of sucked.", my house almost caught fire.

You read that correctly.

The pellet stove in our house malfunctioned and the sparks from the fire (that should not have been burning because the stove was OFF) were shooting out into the house along with an ungodly amount of smoke. Did I mention it was ten o'clock at night, the power had gone out, it was blowing about forty miles an hour and it was maybe 5 degrees outside with the windchill?

Through the hazy beam of the flashlight I quickly deduced that this was bigger than either of us could handle on our own. The hubby on the other hand? He was in some sort of shock or just major denial because he kept repeating to me, "It's fine. It will put itself out in a minute." I shined one last spotlight on the fire inside the pellet stove and the smoke billowing out of it and ran to get Tess dressed, emergency supplies for her packed, and told the hubby to get her the hell out of the house!

With a final directive to the hubby of, "Please, call the fire department!" we were off to my mother's for the night. (she conveniently lives about a two hundred feet up the road from us). Ellie and her boyfriend had met up with us as we were fleeing and very calmly accepted the situation as "just another day at the Reidy's" and helped me out get Tess to my mom's.

After pounding on the door and scaring my mother half to death, we got Tess back in bed and Ellie's boyfriend was just about to leave when the phone rang. It was the hubby. "I've called 911 so you'll be seeing firetrucks coming by."

Alrighty then.

It was quite a show to watch,  and was even more anxiety producing because I couldn't go and see for myself because I couldn't leave Tess.  So I did what any awesome parent would have done in my situation... I sent Ellie and her boyfriend out as my scouts to go talk to the firemen and make sure my house wasn't burning to the ground or that the firemen hadn't found the hubby lying on the floor overcome with smoke inhalation.  By midnight or so, it was all over. The firemen helped get the stove out of the house, and the only damage was what was done by lots and lots of smoke and a fire extinguisher being used. Two days of kids and family and even Tessie's nurse washing all bedding, furniture, curtains, floors, walls and windows, along with throwing or airing out stuffed animals, rugs and other odds and ends, and my house smells okay. Sort of like a woodstove has been lit. Not great but let's face it, it could have been a whole lot worse.

And last, but certainly not least, I finally got the date for Tessie's hip surgery. Either May 16th or June 25th. I can't even talk about it right now.

And this is what saved me this week because it is just about the most awesome interview I have ever seen and I laugh every single time I see it.

 Sweet Brown sums it up perfectly..."Ain't nobody got time for that!" 

So...how was your week?

Lesson learned

 trailer from the documentary Certain Proof:A Question of Worth


I watched this trailer today and it gave me goosebumps. What I saw hits very close to home. The constant struggle to make others understand that our kids with special needs (especially the kiddos like Tessie who are on the extreme end of the spectrum) have value and worth.

That they think. They feel. They love. They understand what you are saying. They have a sense of humor. They are capable of learning if given the time and patience it can often take to teach them. That the light in their eyes, that sparkle, is a knowledge far deeper than most of us will ever know.

And the real kicker is, I used to be one of those people. The ones who think that kids with special needs are "less than". The word "retard" would regularly escape my lips with no regard to who I was really talking about. I was one of the people who thought kids like Tess were a drain on society. They couldn't be taught. Couldn't learn. Would have to be taken care of their entire lives only to give nothing back in return.

Long story short:

I was a selfish, ignorant jerk.

I am not proud of who I was and the things I thought I believed back then. In fact, I am more ashamed of that than anything else in my entire life.  And when I look at Tessie, it makes me want to cry to know that there are others in the world who think about her like I used to think about someone else's baby.

Thankfully, here's what I have been given the privilege of finding out through experience; Tess gives back far more than she could ever take. She is smart. When she doesn't want to do something (like school), she will make herself go to sleep until she is given something she wants to be doing-like watching Toy Story 2. She is a kid who loves inappropriate humor. I often joke that if Tessie ever learns how to talk, we will all be in trouble. She thinks it's funny when I yell at  cheer for my older girls when they are playing sports.  She absolutely loves music, again, the more inappropriate (Baby Got Back comes to mind) the better. And even though she has gone through more in her nine years than most of us will in a lifetime, she will still smile and giggle at the world around her.  She thinks her sisters are the best people that were ever put on the earth (can I just tell you how awesome they are with her?!). She loves unconditionally. When she smiles at you, it shines out from a pure heart and soul.

Are there hard days? You bet. Days where you think your heart can't possible break any more and then something happens and you realize, "I guess it can." Days where the ache is so deep you wonder how you are out functioning in the world. Days where you think you just can't take it anymore...no more therapists, doctors, health agencies, insurance agencies, school calls, diaper changes, meds given, seizures...NO MORE.  But you keep going because there isn't a choice.

This is your child. Your baby. And there is nothing you wouldn't do for her because she is worth all of it.

All kids are.

Maya Angelou once said, "...when you knew better, you did better."

Thank God I now know better.

Following up

The appointment at Children's went pretty well, all things considered. 

I met with one of the docs who will be a part of Tessie's team for the surgery who handles the muscle/tone issues that kids with CP are known to have. 

A big part of Tessie's pain is coming from muscle spasms. Of course this leads to the question; is it the hip being so out of socket that is causing the spasms, or the spasms that are pulling the hip out of socket? Either way, it really makes no difference because it all leads to the same result. 

Bilateral hip surgery. 

I really like Dr. Q and she was very patient about answering my many questions, especially my concerns regarding the amount of pain Tessie is in, even with attempts already being made at pain management, and then having to listen to my concerns about medicating Tess even more for the pain. She had some ideas on how to better control the pain, one of which includes Botox injections to freeze the muscles that are spasming and thus, help them relax.

I am waiting for Dr. M's (the surgeon) OR (operating room) scheduler to call me with a definite surgery date which will be sometime at the end of April or beginning of May.

Yes, that is way farther out than I would like but Dr. M took quite a bit of time, unscheduled for him-we were not on his books to be seen (yet he came in and sat down to talk to us as if he had all the time in the world-awesome), to explain why.

Basically it is because he is booked already but, he did, very generously, offer to fit Tess in sooner if his scheduler could get OR time in the hospital. He even offered to cancel his clinic if it happened to fall on a day when he had to see patients, in order to accommodate us. That is a big deal because this man is crazy busy and it would really throw a monkey wrench into his regular schedule to do this for us. It is hard to get the OR time however, because it is a long surgery and to get an OR slot that allows for that amount of time is tricky. He also offered to see if one of his colleagues had any time sooner to perform the surgery but I quickly vetoed that. Like I said to him, "As a mom, when you meet a Dr. that you instinctively trust and like, you don't want someone else. Especially for something this huge. And I met you first, you lucky duck!" (yes, I actually said, "lucky duck"). And you know what he responded with (after he laughed)? He said, "I am lucky. It's my privilege to get to help her." And he was just so sincere. I tell you, I love this doctor.  

Then he assured us that if we could not effectively manage her pain, she would be considered an emergency and would get priority. That would mean canceling someone who has been patiently waiting, (like we are now) and taking their slot. Great for us; really, really crappy for someone else and not something I felt was necessary to do to another child who was probably just as uncomfortable as Tess is, with parents just as anxious as Charlie and me. 

So I am good with the plan we have in place. I am very happy with how the appointment went.  I felt that they not only empathized with my frustration at having Tess be in pain, but also that  my opinions and concerns were respected and taken seriously by them. And they were very quick to reassure me that, like me, they don't want her in pain and that they are not trying to put off her surgery. 

Dr. M also made the very good point that he doesn't want to go "barreling" into such a major surgery until everyone (including all the specialists that Tess sees) has had a chance to address any concerns that may have about Tessie undergoing such a major surgery. He wants to be aware of any and all potential problems that could arise and be ready to address them if need be during the operation. 

They actually have a plan and know what they are doing if I just trust them to do it. 

Imagine that. 

I will admit, it did cross my mind that maybe there could be some way that my forehead could accidentally get in the path of that Botox needle...just for a second or two. Or three or four.

Working some magic

Remember the old Rolaids commercial, "How do you spell relief?"

Well, around here it is spelled A-P-P-O-I-N-T-M-E-N-T!!

That's right, people. After much wheedling, whining and downright persistence in phone calls every day to the nurses and schedulers in the CP Clinic at Children's Hospital (not to mention working a little magic), I managed to get Tessie put into an "emergency slot" so she can be seen. This Wednesday. As in, only three days away!

To quote Tessie's beloved Cowboy Woody from Toy Story, "Yee-haw  Cowboy!!"

Of course now the nerves set in. It's all becoming very real. Tess is going to be having major surgery sometime soon. The brochure from Children's Hospital says that we will most likely not see her until about eight hours after they wheel her in to the OR. EIGHT HOURS! I cannot begin to imagine what that wait is going to feel like. I mean, we've waited for her in surgery before but that was like an hour and a half tops and even that felt like forever.

It's a good thing I am not prone to panicking. Oh, wait...actually, I am. Crap on popsicle stick.

And then there are all the other things that are going on around here. Namely Ellie's basketball team (hopefully) making it to the tournament and the Community play she has a big part in. I am already sweating it out over the scheduling.

As it is, I am going to miss the last home basketball game of the season because it is scheduled for, can you guess? Yup, Wednesday. Sigh.

If only that Time Turner Kris brought me back from Harry Potter Land was real I would be all set.

               Just a few turns back...that's all I would need.

Alas, until I can be magically transported back in time, I will just try to look at the bright side. At least Ellie has another year of playing basketball so it's not like I will never get to see her play in the school gymnasium again and I got the appointment that I was praying for which means I will get to say in person to the very people who need to hear it,

"MY KID IS IN PAIN! NOW HELP HER!"

And if that doesn't work, my niece, Drey, has Voldemort's Wand. I just may need to ask her if I can borrow it for a minute.

"CRUCIO!"

Grrr

Clearly I have not written a post in a while. It might even be the longest I've ever gone without blogging  since I started nearly three years ago.

I suppose you could call it "writer's block" but that's not exactly it.

The real reason I haven't written any new posts in so long is a bit more complex. And for the sake of honestly here it is...

I didn't want yet another post about how hard things have been with Tessie. I mean, they must all start to sound the same after a while. So instead, I have been patiently waiting for something to write about that would be funny. Light hearted. A little anecdote to maybe make you laugh. Something that I could say to myself, "Aha! This would make a funny post."

And so, my little blog has been very quiet.

The last few weeks have been brutal in regards to Tessie. As in, I want to bawl my eyes out and/or smack-the-ever-loving-crap-out-of-someone, brutal.

Remember a couple of posts ago how I talked about Tess needing bilateral hip surgery sometime in the next six months? Well, the next appointment she has with the Orthopedic Surgeon is not until April and even then it is only a consult, which wouldn't be a big deal except now my little Toodle Bug is in pain. A lot of pain. Wake up in the night, sobbing her little heart out pain. I can actually watch her pupils dilate from it. She cries some during the day as well but it mostly hurts at night. Which makes for long nights and a third person in the bed. Which makes for a tired mama and daddy. And you can imagine how happy being over-tired and over-stressed is making us.

The docs in charge have tweaked her medications a few times to try to control the pain and right now, finally, it seems like it might be working.

But here's my beef. WHY aren't they just scheduling the GD surgery?!?! WHAT reasoning are they using that tells them that it is better to ADD medications and drug the kid up for the next THREE MONTHS AT LEAST rather than deal with the problem?

I just don't get it.

But I will. Because tomorrow I am calling Boston and I refuse to give up until I speak with her surgeon.

No kid deserves to be made to live in pain. Especially pain that the doctors already know needs to be addressed with a major surgery. Especially when the wait for an appointment means three more months of pain and the side effects of the medications used to treat it.

Especially Tessie Toodles.

In the words of her pediatrician, "You don't want to bring mama bear out of the cave."

Well guess what?  Grrr.

Inspiration

It's easy to forget how good I have it. It's easy to get lost in the day to day grind; to let the fear, stress and poor-me's take over.

And then something comes along to remind me just how good life is if I only let myself see it. And if Tess has taught me anything, it is to appreciate the people I would have never given a second glance at before. To focus more on the "special" in special needs and not so much on the "needs".

Something like this:

And this:

And last but certainly not least, this:

And just like that, I know with all my heart, I am blessed.