Captain's Log...Day...Holy crap I went to The "A Christmas Story" House!

Yesterday I was a bundle of nerves as I prepared to take the public access test with Oreo. Our test was scheduled for 11:30. We arrived at the mall about fifteen minutes early just to make sure Oreo was calm and I felt confident handling her. I needn't have worried. We passed without any problems and graduated yesterday afternoon.

Team Tess and Oreo is official!

                                           

But the REAL news, the mega, awesome, incredible news is that I made a pilgrimage to my Holy Land. My Mecca. One of the top things on my bucket list (hey, don't judge me).

I went to see, in person, the place where THE BEST, HANDS DOWN, Christmas movie was made. I went to the....dun dun dunnnn...

A Christmas Story House!!

Squeeeeee! *jumps up and down while screaming like a lunatic*

You guys, it was everything I had hoped it would be. Complete with, wait for it, a GIFT SHOP!

Double squeee!!

After I spent an undisclosed amount of money at the gift shop, and had paid homage at the A Christmas Story museum, I bought my ticket, gripped it tightly in my shaking with excitement hands, and stepped up on to hallow ground as I made my way up the front steps to wait in line for the next tour. My heart was racing. I felt feverish with Christmas glee.

I was about to enter Ralphie's house. It was then that I heard it. Almost as if God himself wanted me to have the full A Christmas Story experience. The sounds of dogs barking.

BUMPESSES!! I shook my fist in the air and cried out.

I. was. in. Heaven.

Then, the door swung open and we were welcomed inside. There are no words that can possibly do justice to my emotions so I am going to let my photos tell the rest of the story. Suffice it to say, I have been on a natural high all afternoon, The high that only those of us special enough to understand the full glory of that wondrous movie, A Christmas Story, will ever get to experience. And it was awesome.

And no, I didn't shoot my eye out.

Add caption

Lifebuoy...Blech!

Ralphie and Randy's bedroom

Look magazine like the one Ralphie plants the Red Ryder Ad in.

He learned it from YOUR SON!

It's an Official  Red Ryder BB gun with carbine action and a compass in the stock!

love it!

It's a blue ball!

The Old Mans' chair

Oh yes I did re-enact the famous, "show mommy how the piggies eat" scene! 

The turkey!

It's a MAJOR AWARD!

It's GLORIOUS! It reminds me of the fourth of July!

Tree complete with bent over star topper

living roo 

Frageelay, must be italian!

The alleyway where Ralphie dreams of shooting the bad guys with his trusty Red Ryder

The back yard where he almost shot his eye out

Captain's Log...day...I couldn't tell you

Everything has been going pretty well here in Xenia although I must admit it feels like we are in doggy/owner bootcamp. Up at the crack of dawn to get Tess ready, as well as ourselves, get in the car, drive to 4Paws and train, train, train for 6 hours. We get back to the hotel sometime around 4:30ish and are completely exhausted yet there is more training to do. So we take a little break and then start randomly giving out commands to Oreo.

Here's the thing with Oreo. "She's a sensitive girl". We have heard that over and over again while at 4Paws. That is the biggest reason she was matched with Tess. They needed a sweet, mild tempered dog so that Tess wouldn't get hurt and that Oreo really wouldn't care that Tess couldn't play rough games with her because she wouldn't like them anyway. Of course, being so sensitive means she also has a few, well, we'll just call them quirks. She gets scared easily but then gets over it as soon as we make sure to show her that there is nothing to be afraid of. Her biggest fear is the BIG SUBURBAN. She absolutely hates getting in. Once inside the car she is fine, but getting her to actually jump in is the issue. She gets herself upset enough over it that she will sometimes vomit. We can't be mad with her because she just can't help it, and she looks so ashamed of herself that we just end up feeling even more sorry for her.

At first, we thought it was motion sickness. I mean, wouldn't that just be the height of irony? The people who drove the farthest and regularly have to take a ferry, would get the dog who gets motion sick? But after discussing several times with Jeremy, and having him come out to watch her reaction to getting in the car, he really feels like it is all anxiety and that she is getting so anxious she makes herself sick. We are figuring out tricks to help her and are hopeful that once we get our own minivan back, she'll feel better about getting into a car. Time will tell.

We have been learning some fun commands as well as the obedience/work ones. Like today we learned to have them "play dead" by pretending to aim a gun at their head and saying, "Bang". It was really funny. And they have other expressions they use for the same trick for those people that are uncomfortable with the whole pretending to shoot a gun thing. We did the gun but also tried the others just for fun.

practicing DOWN with distractions

giving praise and reward for staying down even with people coming up to her

The hubs giving a reward for a good SIT

Oreo is also learning to retrieve things that Tess has dropped and bring them back and place them on her lap. It's a little tricky, but the more we do it with Oreo, the better and more accurate she is getting. Eventually we can teach her to retrieve the phone or the bag that has Tess's emergency seizure meds it

if we want to so that we don't have to leave Tess's side to get them while she is seizing. 

And while all of this is really incredible, the thing that the hubs and I keep remarking on, and are most grateful for, is to watch Tess with Oreo. She just lights up when she sees her. And this is the most we have seen her smile and heard her giggle in such a long, long time that we both agreed that even if Oreo couldn't do half the things she can, she was well worth getting for Tess.

This morning was the first morning that we woke up to find Oreo on Tess's bed without us prompting her to get up there and stay with Tessie. It was beyond heartwarming to see.

We made a wish for Tess in the hopes that it would be something she really loved, and it is coming true.

How blessed are we?!

Captain's Log...no idea what day

Well, things are a little stressful today. Tess has caught an upper respiratory infection and we are praying it doesn't lead to an emergency trip to one of the local hospitals. Dr. Stephenson sent us with antibiotics for just such an emergency, but as we all know, often times they are not strong enough to fight whatever virus Tess may have. At least we've got a chance though. We are well equipped with oxygen, suction and meds so we are in a wait and see pattern right now. It's up to Tess at this point to get better. I kept her with me at the hotel today to get some good rest while Charlie went to train with Oreo. I hate missing a day of training because you miss SO MUCH but Charlie can catch me up on it.

This morning, before leaving, both Charlie and I noticed that Oreo was acting kind of odd around Tess. Not "scenting" a seizure because we already know what that looks like, but more of a worried pace. She would wander from side to side of Tess's bed and then just lay her head down on it and look at Tess and sigh. Honestly, we think she knew that Tess was sick and she didn't like it. It was pretty sweet to watch. She is such a little "mother hen".

Yesterday was our first real outing with Oreo and we went to the mall. This mall is HUGE. Oreo did really well but we do need to work on her heel just a little and her excitement when she sees kids. Of course most of the kids would yell out, "oohhh doggy!" and want to pet her so I would tell them they could pet her just as soon as I put her in the DOWN command. Oreo did really well once in the DOWN and wouldn't try to get up or move when the kids were petting her. She did perform some tricks for them and two little girls told me, "You are very lucky to have such a good doggy! She's the best dog I've ever met!" Too funny.

Oreo is a bit of a wimp though. She gets freaked out by the elevator dings and hesitates to step inside them but we are working on that. She was awesome when I put her in the SIT command when I went to pay for something I bought, and she was equally great at rocking the UNDER command while Charlie and I ate lunch in the food court and staying under the table. I even tried to trick her with a distraction by throwing a piece of my chicken right down on the floor about 6 inches from her nose and she never once tried to get it. I know, mean mommy! But in my defense, we are told to do things like that!

We also got to see first hand, her open a handicapped door for us. We simply showed her the button and said, "HIT IT", and bam, she either made it work with her nose, or, if that wasn't enough pressure to open it, she would jump up on her hind legs and hit it with her front paw over and over until it opened. She would then stay there until she saw that the door was opening and then she would return to HEEL. Really cool stuff.

Anyway, as I said, I'm bummed I missed today's training, but what can you do? I am trying to not be super worried about Tess but the reality is, Tess doesn't usually recover from these things without hospitalization and IV antibiotics so I'm really quite stressed. Ugh.

Both Charlie and I were feeling somewhat sorry for ourselves this morning after a rough night with Tess and needing to get out the oxygen and realizing that she really was getting sick, and remarked that "Nothing can ever just be easy."  And I have to confess, sometimes it really does feel that way, but then I found this quote and decided to just focus on how grateful we are to even have this opportunity. I'm still scared and worried (and overwhelmed at the thought of trying to figure out how to manage the training and the dog if Tess has to go into the hospital), but not feeling quite as down as I was this morning. So here's a good quote to keep in your back pocket for tough days:

“Nothing in the world is worth having or worth doing unless it means effort, pain, difficulty… I have never in my life envied a human being who led an easy life. I have envied a great many people who led difficult lives and led them well.” ― Theodore Roosevelt 

You said it, Teddy.

Captain's Log...Day....what day is it????

We have been so busy that the time seems to fly by and drag all at once. We are literally on the road heading to 4Paws by 9:30 every morning and do not get back to our hotel until close to 5. Yep, other than an hour lunch break it is all training, all day.

Last night was our first night having Oreo with us and she was just so dang easy. She even slept on the bed with Tess for almost the whole night. It was so cute! And Tessie woke up all smiles when she saw Oreo was there. Yay!

And tonight, we actually took Oreo out to the hotel's "restaurant" tonight for a trial outing and gave her the command UNDER to get her under the table. She reluctantly went and although she did break command once, I quickly corrected her and she stayed still under the table for over an hour. Even when other people and dogs stopped by our table. Good stuff.

We have been working on keeping the dogs in command with distractions. For example, telling them DOWN and they must lay down and not get up no matter the distractions around them without a FREE command from us. I'm going to post a video on the Travels with Tessie Toodles FB page so you can see Jeremy working with Oreo on the down with distractions command. It's pretty cool. Honest. ;)

 Oreo also did her first (that I could catch for sure) pre-alert to a seizure and it was just over 45 minutes BEFORE Tess had a small cluster (3) of tiny ones. So essentially Oreo let us know that we needed to be ready for some action. And she was right on the money! Plus, I have to say, after she physically stopped me from wheeling Tess  in her chair so that she could sniff Tess and alert, she proceeded to "lap" Tess and look at me like, "Um, excuse me crazy lady, your kid has something happening here, ya think maybe you should pay some attention to her?" Of course I gave Oreo tons of praise for her good work but the expression she had when she looked at me was too funny! I asked Jeremy if "lapping" the child after and alert was normal behavior and he said that Oreo was just very motherly and probably was just making sure Tess was okay. Good girl!

She has been either alerting or pre-alerting everyday! Next up we will work on the BARK as well as getting her to alert (with barking) to a Grand Mal seizure as it takes place, not simply as a pre-alert. Phew! Lots to do!

And God help us, we take Oreo to the mall tomorrow. Say a prayer for a good day without having to hear the words, "Clean up in aisle 10!"

And now for a little "awwwwwww" I give you Tess and Oreo...

And last but not least, here is Oreo in her OFFICIAL seizure dog alert vest.

Captain's Log...Day Six

Today we really got into giving our dogs commands and the difference between letting them know when they are "working" and when they are "free" to just be dogs. We are also learning a lot about how to foster the bond between Oreo and Tess and how to have Oreo want to be around Tess more than anyone else.

Basically it breaks down to always giving Oreo a lot of praise and treats whenever she goes over to Tess as well as "baiting" Tess's chair with treats so she'll associate Tess with things she loves. Today, without even given the command, Oreo went over and "lapped" Tess. This simply means she went over to Tess and rested her head on Tess's lap, well in this case, Tess's leg. It was beyond adorable and Miss Oreo earned herself much praise and many treats for that!

Oreo realizing that Tess has some treats for her.....

We also are learning that just because these are service dogs doesn't mean they are robots and are always perfect. That is why we are being trained on how to carry over everything they have learned and continue to reinforce and build on it once we are home. There is so much more to it than I ever thought but it is so interesting and really impressive how smart the dogs are. Also, these dogs are still puppies so they will need corrections from time to time.

Some of the dogs are really sensitive to corrections and really want to please. Oreo is one of the sensitive ones. I felt like the meanest person on earth today when I put her in the "down" position and she got up before I "freed" her and I had to correct that behavior with a gentle pull down on her leash while saying, "No.", then releasing tension on the leash and reinforcing the "down" command. Poor Oreo looked so ashamed of herself and I couldn't reward her with a treat until she had maintained the "down" for a bit.

We also worked on "heel" and a few other things. It was a long day but a good day and as far as the question you are all wondering goes, yes, Oreo alerted to two more seizures with Tess today. Smart girl!

Another dog alerted up to 45 minutes before his girl had a grand mal seizure.  I cannot explain what that is like as a parent to see and be able to trust. There simply are no words.

Lastly, I'll leave you with a fun picture of Oreo giving Tess "Five" and "shake'. Of course we had to stabilize Tess's hand but Oreo was patient with her girl and kept trying to make sure she made contact with Tess's hand before giving up. She really is a great dog!

Until tomorrow....

       Putting a treat in Tess's hand to get Oreo's attention to give High Five

                     the trick...High Five!

          Not sure if you can tell from the pic but Oreo is shaking Tess' hand rather than the high five

Captain's Log...Day Five

Okay, my bad, I skipped days three and four but in my defense, there really wasn't much to report.

Unless you count hours and hours and hours of driving in a total blizzard and seeing eighteen wheelers, cars, and trucks off the road, worthy of reporting. Or the fact that last night, while getting Tess ready for bed, the hubs spasmed his back and was in agonizing pain until late today. Not fun or easy trying maneuver a disabled child who is heavy, along with her wheelchair, which is also heavy, in and out of hotel rooms, vehicles, and training facilities all day long. And with a wife who has fibromyalgia so her back is wrecked all of the time, makes for some tricky footwork. But we soldiered on. We didn't come here just to let a few back spasms and fibromyalgia slow us down!

So today was THE BIG DAY!

Tess finally met her seizure alert dog Oreo and while it wasn't magical bonding at first site, Oreo was a total rockstar!

Tess fell asleep and slept most of the day which we expected because that is what she does in situations where she feels overwhelmed. Well, let me tell you,  a room full of excited kids, adults, and dogs is enough to make even the strongest of us want a little break. Tess did wake up here and there and we would have Oreo come over and get treats from her and Tess seemed to like that.

This morning, after meeting with Oreo for all of about an hour we noticed she got all wiggly and excited and randomly started licking Tessie's hand then digging her muzzle into Tessie's chest and proceeded to repeatedly lick at her mouth. We thought Oreo was giving "kisses".

We are so stupid.

The main trainer of 4Paws had been watching the whole thing and after Oreo calmly laid down, came over to talk with us. He told us that he thought Oreo had just alerted to a seizure based on her behavior. His point was, she hadn't been called over to Tess, Tess hadn't made any noise, and no commands had been given to Oreo to give Tess loves. Oreo approached her randomly and excitedly all on her own. That is what they are trained to do when scenting a seizure.

Holy awesome dog, Oreo!

After that, I noticed that Jeremy (the trainer) kept a very close eye on Oreo and Tess. And yes, my friends, our awesome Oreo alerted THREE MORE TIMES over the course of the day! It was even pointed out to the class while she was alerting so that the families who were also getting seizure dogs would know what signals to look for in their dogs. I'm telling you, it was unreal! And as soon as it was over, maybe ten to twenty seconds, Oreo would go back to doing whatever she had been doing before she smelled the seizure.

We love this dog! Granted, these are small seizures that we know Tess has many times throughout the day that we didn't need to help Tess with, but I've always wanted to know how many "little" seizures Tess has in a day but never could figure out because we would often miss them. Now, thanks to Oreo, we may just get some answers. And if the dog is this good at the "little" ones, can you imagine how good she'll be to alerting to the Grand Mal seizures?

We also went over the basic commands of "sit" and "down" and learned A LOT. These people know their stuff! Oreo was a champ at the obedience practice that we did with her. There is much more to learn but I am convinced that Tess got her perfect match in Oreo.

So this was day one. Can't wait to see what day two brings!

                                  
       Oreo getting her reward for alerting to Tessie's seizure

Captains Log...Day Two

Last night we hit our first major glitch of the trip when I discovered that Tess's pulse ox machine, you know, the one the tells us her heart rate and oxygen, was not working properly. Not exactly a comforting feeling when you have a kid who has needed oxygen at night more often than not over the past few months.

After tinkering with it for a bit (read: hitting it multiple times on it's side and possibly calling it a few colorful names not fit for print), it decided to let me win and started to do it's job. And thanks to Kim at Dr. Stephenson's office, a shiny new one should be waiting at our hotel in Xenia upon our arrival! Now say a prayer that our old one has enough life left in it to get us there before quitting for good.

But we are the Griswolds, excuse me, I mean, the Reidys, and we can roll with the punches.

And in that spirit we woke up this morning bright and early and raring to go!

Okay, so I rolled out at almost eight o'clock, just in time to give Tess her morning meds.  The princess HAD TO BE WOKEN UP at 9:15 so we could get her dressed and out the door. Yes, our little diva does love her sleep!

Meanwhile, the hubs braved the frigid temps and got Tess's car seat switched over from our van to the rented Suburban. THE BIG SUBURBAN. I want you to remember that. Suburbans are big, am I right? It was when he tried to get the wheelchair in the back of the Suburban that a warning flare went off in his brain. He heroically (stubbornly?) tried to ignore it and continued on with packing the dog supplies. Another warning flare shot off. This one was not to be ignored.

I knew when I heard the front door open and peeked around to look at his face that there was trouble afoot.

"We still have tons of stuff left to pack and we're already almost out of room."

Uh....WHAT?!?!

I informed him that, even though I had not been the one out in the cold, struggling with trying to move a car seat, a wheelchair and other irksome items, that there was no way he could be right. I mean really, it's a Suburban for crying out loud! Tons of space! More than enough room! It had all fit in our van! Load her up, baby!

"It's. full. No. more. room." He spoke as if trying to explain to a small child. I shook my head and again informed him that he was wrong. "It's not possible that our van is bigger than that Suburban. How can that be accurate?", I skeptically questioned while giving my best 'Oh Please' expression.

You can imagine how that went over.

The hubs huffed out a big breath and gritted out, "You go out, and you figure out how to load it up. The wheelchair had to be shoved in on it's side. You need to start prioritizing what you absolutely cannot live without."

Hello! I need everything, hence the reason it is all packed up in front of you waiting to be put in the...wait for it...BIG SUBURBAN!

So we both went out and surveyed the situation. Well, I pretended to survey while really just stood around pointing aimlessly at things that needed to get from one vehicle into the other and generally feeling very confused and cold. I'm sure I was a great help. The hubs quickly figured out I was going to be of no use with this dilemma and did his best impression of Tim Gunn (you know, from Project Runway) and "Made it work!". Yes, he got everything in, albeit a tad snug. Snug as in, there is no room for a dog. Anywhere. Well, we'll just cross that bridge when we come to it. Tomorrow's another day and all that.

So I set up Garmin for us and Toy Story 2 for Tess and we were off like a herd of turtles!

The drive was fairly uneventful unless you count almost being side swiped by an eighteen wheeler (TWICE) eventful. Not much to look at although it was pretty as we came in to Pennsylvania. We are here in Wilkes-Barre, PA for the night, all tucked in to our hotel room nice and cozy.

Anther six hour drive is the plan for tomorrow to get us to Mansfield, Ohio which is only 2 hours from our final destination.

It's supposed to snow. Naturally.

Captain's Log....Day One

Today was OFFICIALLY the start of Tess's Make a Wish trip. Now, I realize pretty much everyone who reads this blog already knows where she wished to go since you all basically live in my small town, but for those ten of you who I don't already know personally, can you guess where she wished to go?

Nope, she did not wish to go to the happiest place on earth (Disney World).

Nope, she did not wish to go frolicking with the dolphins in the Bahamas.

Nope, she did not wish to get leid in Hawaii (now get your minds out of the gutter).

Alas, my Tessie Toodles wished to go to beautiful, exotic, Xenia, Ohio. In January. Yeah.

Where the heck is Xenia, Ohio you ask? Good question. And I have no idea. Here's hoping Garmin and Mapquest really do know their stuff geographically speaking.

The big lure of Xenia is that that is where 4Paws for Ability is located and Tess's wish was for a service dog.

Today the wish began with a trip to Petco to pick out all the supplies Tess's new furry friend will need. Tessie picked out exactly one item, a pink bowl, before she totally shut down and refused to even look at anything else. Imagine if you will, her two parents trying desperately to peak her interest in dog toys and dog crates and dog leashes, as the Make a Wish representative and manager of Petco look on in expectation of smiles and maybe a few giggles. The hubs and I became almost manic in our "oohs and aahs" over every little thing, practically pleading with our stubborn girl to seem even the teensiest bit interested. No dice.

At one point, the manager and the MAW rep. asked for a photo. The hubs and I smiled like people verging on the brink of insanity as Tess refused to even lift up her head. In the end, I had to literally hold her head up with my hands for the photo. It looked like I was choking her and our eyes had a look sometimes seen in people who have missed some very necessary psychotropic drugs. Somehow I don't think that picture is going to make the Make a Wish calendar this year.

Everyone was very kind about Tessie's lack of enthusiasm and very generously accepted our excuses of, "She's been awake since 4:30." and, "We think she thought she was actually going to get her dog today so she is sulking that there is no dog." Both true but still, it felt very underwhelming that she was so disinterested in her wish.

Tomorrow we hop in our rented Family Truckster, err, I mean Suburban, and begin the drive to Xenia. I can't help but feel like Ellen Griswold in the movie, Vacation, when she and Clark make a crazy road trip to WallyWorld with their kids. I can only hope we don't run into Christie Brinkley in a red Corvette in our travels.

Until tomorrow....

                                     

Catching Up

A lot has been going on here at the Reidy House during the last several weeks. Some good, some fun, some frustrating and some scary. In other words...more of the usual.

Since Charlie's mom passed away in September of 2012, we've had to come up with a new Thanksgiving tradition. The first year it was just us and to be perfectly honest, it was awful. We really missed "Grandma Reidy" and our tradition of gathering at her house with most of Charlie's nine other brothers and sisters as well as their spouses and kids. It is all Blake, Ellie and Tess knew because we went there every year for Thanksgiving. And when the kids got old enough, after the big meal had been consumed, Heather and I would take our kids out to see the latest movie that was playing and then go back to our hotel to swim and hangout. I used to really grumble about having to go every year, especially after Tess was born because it felt like so much work to pack everything up for just a couple of days plus having to take the ferry and then drive for two hours in often really rotten weather. I wished we could just stay home and have Thanksgiving. Well, you know that old saying, "Be careful what you wish for" because when that finally happened I realized how much I missed the tradition. And Of course Charlie really missed getting together with his family and so did Blake and Ellie. Long story short, we vowed after that first "home" Thanksgiving that the next year's would be different.

Enter Joel and Robin and their two kids, Keegan and Katie. Add in Heather and Norman and their two kids, Joe and Jack and well, let's just say that this past Thanksgiving was a lot more fun than the previous year and we hope that maybe a new tradition has begun.

Then my best friend, Kellie, and I took our two girls, Ellie and Hannah to see P!nk at the TD Garden in  Boston. If you are a fan of P!nk but have never seen her in concert, I highly recommend you get yourself to one, tout suite! It was awesome! And it was such a nice getaway for a night. A break from my normal routine that was very much needed.

It was also around this time that Tess started in with her junky cough which usually signals a major illness is on the way. After many, many home visits by Dr. Awesome, aka Jen, and a few consults with her mainland pediatrician, it's safe to say that Tess was on some pretty heavy duty antibiotics most of the month of December.

This is also the time that she started really requiring oxygen on almost a nightly basis. Sometimes even to the point of us having to get up more than once to increase the flow that she was getting. It was starting to freak me out a bit. WHY was she requiring the oxygen and WHY was she never fully getting her lungs clear?

Then on December 19th Tess just sort of crashed. I had literally been up with her all night trying to help her manage her cough, which she was choking on which meant lots of suctioning as well as trying to keep her oxygen sats above 90. I knew when we had the oxygen concentrator up to 3 liters and she still wasn't maintaing a good O2 sat that we were in some real trouble. And bonus, it had stormed the day before and we had lost power for a bit and even when the power came back on, my phone and internet did not. So there we were, with a very sick Toots and no way to call anyone for help. Good times. Good times.

By five o'clock that morning I had her bags all packed and ready to get on the ferry. I drove over to my dad's house because my phone still wasn't working and called Jen and she met us at the boat and did a quick check and agreed that Tess needed to be off the island. We got to her pediatrician's office and after checking her out he deemed her well enough to take home.

I wanted to throat punch him.  (even though I really do love him)

EXCUSE ME?! Did you just say take her home?! As in back to the island?! After the night we just put in with her?! Surely you jest.

But no, he was not joking and Tess, being the little stinker that she can be, actually looked really good in his office so I couldn't argue too much without looking like a totally neurotic mother. I did question the fact that Tess is notorious for acting well in his presence and then crashing again when home but the hubs and I got reassurance that she probably wouldn't have another bad night like that. So off we went like a couple of idiots.

And of course, back home as the weekend wore on she got sicker, and sicker and sicker and I had to keep calling Jen and Jen had to keep coming to my house until finally, on Monday the 23rd, both Sheila and Jen assessed Tess and said she had to go to the hospital. Most likely with pneumonia.

I burst into tears. I love Christmas. LOVE it. I was supposed to be having around 35 people at my house the next night for our annual Christmas Eve party. And I just KNEW, once Tess got admitted, we would not be able to be home for Christmas. I'm not gonna lie. I was devastated. To their credit, Blake and Ellie handled it far better than me when they found out that we may be spending Christmas in the hospital.  I am not proud of the way I handled it but they were being such good sports about it I figured I should too, so I once again put on my big girl panties and dealt with it. Or at least tried to.

Once at the hospital, after the ER assessment, Tess was admitted into Special Care and we were told that is was very, very "unlikely" that we would be released the next day in order to get home for Christmas. I cried again like a little baby. Yup. What a wuss.

Tess was given some IV antibiotics and actually had a really good night. And the next day she looked and sounded so much better. And, has luck would have it, a different pediatrician was on call and even though the notes he was given from the pediatrician the day before clearly stated that Tess was to remain in the hospital for another couple of days minimum, I began to prepare for my defense of getting her out that day. Let's just say, I should have been a lawyer.

Did I talk my way into getting her released in time for Christmas? You bet! Was it smart of me to do that? No, not at all. Did I pay for that selfish little mistake later? You bet!

We got home around 6:00pm on Christmas Eve. The hubs stayed home with Tess while I raced to change my clothes and get to my family's party where our two other girls already were.

Christmas Day was fun although I did have one of the worst migraines I have had in ages all that day. But Tess seemed to be doing better. Jen was coming every day to check on her and even came over on Christmas Day to give Tess her shot of antibiotics. Above and beyond once again.

But by the 30th, Tess was back to having a junky cough (it had never really been gone but was becoming more intense) and was requiring oxygen at night again. Sheila came out and put in an awful night with Tess once again trying to get her lungs to clear. By morning we were back on the ferry heading to her pediatrician's office. When he came in the room and sat down and looked at me and said, "Mama Reidy, what's going on with my girlfriend?", I just started crying again. I told him I didn't know why she wasn't getting better, that I was exhausted from not getting much sleep due to the alarms and oxygen, etc, and that I was, "DONE!".  I even raked my hand across my throat when I said it in the universally recognized "cut" motion for emphasis. Very dramatic. And I wonder where Ellie gets her flair for acting.

Poor Dr. Stephenson. He just looked at me and said, "Let's just admit her." I'm willing to bet that he probably really thought it was me who should have been admitted. And he wouldn't have been wrong. ;)

Off to the hospital we went. Tess was once again admitted into Special Care for two nights where she proceeded to prove once and for all just how crazy her mother really is. She couldn't have been healthier. I was so mad! Not that I want Tess to be sick but because I really wanted them to see what we had been dealing with at home. No dice. That little stinker just refused show them. So we came back home on Jan 2nd and bingo, right back to junky cough and requiring oxygen. Although in Tess's defense, she did have a cough the whole time we were in the hospital.

Now we are waiting for appointments in Boston. Dr. Stephenson, along with her Complex Care pediatrician in Boston, both agree that there is SOMETHING going on with her lungs and we need to try to find out what. They have put her on an inhaled steroid in the hopes that will help, and there has been talk of putting her on an inhaled antibiotic that is the same one that kids with Cystic Fibrosis use. Gulp. That doesn't sound too good to me but hopefully doesn't mean what I fear it means. That her lungs are starting be damaged from all the pneumonias and infections and she is now reaching a point in her development that this will be a new normal. That she will always need extra help to breathe properly. That she will always have a junky cough from now on. I PRAY that that is not what is happening but instead, it is something that can be fixed once we find out what is causing the problems.

But for now, Blake is on a very cool trip to Dominica with some kids from her college and Ellie is in the last part of her final year of High School and has received her first acceptance letter to a college in NH along with a pretty sweet academic scholarship. She will wait to hear back from all of the colleges she has applied to before making any decisions but the process is exciting.

And the hubs and I (and Tessie) are gearing up to take her to Ohio to train with her dog along with the rest of the January class at 4Paws for Ability. We'll be away for a little bit and I am very anxious about having her so far away from the docs who know her best. I am trying so hard to not let the fear of the "what if's" steal away the happiness of Tess finally getting her service dog. I want to try to focus on the adventure of it rather than the potential problems that could very easily come up.

So. much. to. think. about.

And so much to be happy about. I just need to keep reminding myself of that when the worry tries to creep back in.  One of my favorite Bible verses helps me keep things in perspective when I get too overwhelmed with all of the "what if's" in my life:

Pretty reassuring, isn't it? :)

What not to say to a parent of a child with special needs, my take on it

It seems to be all the rage these days for parents of kids with special needs to write blog posts stating their opinions on what to say, or not to say, in regards to their children with SN.

Here's my take on the subject:

ENOUGH ALREADY!

When did we, the SN parents of the world, get to tell other people how to talk to us? I mean honestly, unless you are being outright rude and mean (for example I will be forced to confront you if you use the word, "retarded" in front of me), I have no right to tell you what to say to me. And, in my own personal opinion, all of these well intentioned blog posts are doing the opposite of what the authors of them are intending. It is furthering the divide between parents of kids with SN and the rest of society, not bridging it. I mean, who would want to strike up a conversation with someone when there seems to be so very many things that they are not "allowed" to say to us lest they inadvertently offend us?

And let's face it, it can be a little intimidating to talk to someone who doesn't talk back or who you're not sure of their ability to communicate. If someone is making the effort, even if it is a bit clumsy and awkward, to talk to Tess, I am not going to berate them and tell them they are doing it wrong. Frankly, I am just happy that Tess is being acknowledged because so many times people act as if she isn't even there.

So go ahead, ask me questions if you're not sure what to say or how to approach Tess. Ask me anything within reason and I will gladly tell you probably more than you ever wanted to know about Tessie. And don't worry that I am going to be offended if your child is staring. It can be confusing for kids to see people who need wheelchairs, or make strange noises or odd motions with their hands. They will follow your lead with it so if you are nervous and "shushing" them and making them feel bad for being curious, they will be less likely to want to include our kids later when they see each other in social settings like school or the playground because they were told to "stop staring" and "don't ask that" as if our kids are too different to be approached. Encourage your child to come over and say, "Hi" and even ask questions if they have them. Kids are almost always staring out of simple curiosity and when allowed to ask questions, are very accepting.

Then there are the "rules" of not saying certain cliched phrases to us. No, "God only gives special kids to special parents" or "I could never be as strong as you." Yes, there are days when I hear those and want to scream at the person saying them that they have no idea what they are talking about. Thankfully, most days I can hear those cliches and just nod and smile or joke with them about it because people are saying them to me in an attempt to make me feel better, not bad. Got that? BETTER not bad.

Long story short, we, the parents of kids with SN, need to lighten up just a bit and stop trying to set rules on how we can be talked to. Most people aren't trying to be offensive, they are trying to be kind. How about we be kind in return and allow them a little latitude, not a lot of rules.