TRIP OF A LIFETIME
My little world traveler visited Nebraska, Michigan, Rhode Island, and Pennsylvania all within a two week time span!
This truly is a a trip that will continue to extend way beyond our vacation. Maddox is scheduled to see a nationally known Speech Therapist who specializes in oral motor development, she is the best of the best. As I posted on Facebook this morning, it’s not Michael Jordan but the next best thing. This visit was scheduled on Sunday in Rhode Island.
Then, on Tuesday in Philadelphia we are scheduled to meet with the Down Syndrome Trisomy 21 clinicians at the Children's Hospital. There are only two of these clinics in the US so I am hoping to get top notch researched based information.
I am writing this live, so here is how the trip is unfolding so far.
Friday July 29th
I double checked my airline tickets and saw that I departed Alpena at 8:00 AM on Saturday. Everyone was telling me Alpena doesn’t have an 8 o’clock flight. I called the airport (a few times), finally got someone and they said the only departure is 5:44.
Until the guy says, “Wait, it IS 8 o’clock on Saturdays.” Geesh. I am off to a great start.
Saturday July 30th
I said a sad goodbye to Scott. He was originally going to go on this trip but ticket prices skyrocketed and there was tons of work to be done on the renovations to our house. He was feeling terrible for not being able to assist me, but I reassured him all would be well. I had given myself plenty of time in between flights. The other moms I see traveling always seem to make it look so easy. I can do it.
Security was crazy in our little Alpena airport. By the time I got through, it looked like my diaper bag exploded. There were shoes, diapers, computers, cameras, bottles, stroller parts, and toys everywhere. Some nice fellow offered to hold Maddox while I regrouped, collected my things, and got re-situated.
Guess what, my almost two year old threw and almost two year old tantrum. She didn’t want any old granola bar, she wanted the lady’s granola bar!
Finally, after I calm her down, her eyes close to rest and wham the ties of the jet hit the ground, we have landed. So much for timing of nap number one.
Something ironic did happen at this stop though.
A wonderful lady offered to hold Maddox while I got her stroller out and situated. 10 hours later I receive a note from a friend in Texas, turns out it was her mom that offered to help me! It’s such a small world.
We have one hour in Detroit so I went to buy a lifewater. You know, one of those delicious drinks you pay maybe $1.30 for in real life. Yep, the airport charges 3.50 for one. I am in for a rude money awakening on this trip. I think I prefer Alpena’s cost of living!
Another thing about the airport experience. I forgot that you can’t take the stairs or escalator with a stroller. A new mom thing. I get in the elevator and my already exhausted butt leans against the wall to rest. The pilot says, “Humm, wonder what the alarm is going off for?” It takes about 4 more seconds until I realize it’s me.
Um, yeah, don’t set off the elevator alarms in the airport - unless you want a first class ticket to hang with security.
Before we boarded I wanted to change Maddox’s diaper. Now, in my 18 months of mommy hood I have never been peed on. I went about my business - almost - as usual. Got the diaper off, prepared the next one and oh....decided to wipe a nose with a cold baby wipe before securing the diaper.
You see where this going?
Baby flails, baby gets mad, baby pees entire 8 ounces of milk from the first flight.
And I mean pees, all 6 inches straight in the air. EVERYWHERE. That’s not the worst part. That part consists of a line of 10 people all waiting to use one broken paper towel dispenser. I just wanted to shout HAND DRYER PEOPLE, save the earth, and let this poor mom clean up the massive amount of pee Maddox is laying in because it was quite obvious we were going to need more assistance than a hand dryer.
Anyhow, we board to Rhode Island and had two seats to ourselves so Maddox slept the entire way. It was perfect. Upon landing I find the shuttle no problem and head to the hotel. The shuttle guy was extremely helpful, turns out he has worked 7 days a week for 4 straight years now, only missing one day. It’s amazing the ambition some people have. I need to review my own work ethic because that is incredible!
After settling in we decided to walk to get some food. I am pretty much lodging in an airport hotel, nothing near by except gas and Dunkin Doughnuts. We head to of course Dunkin Doughnuts to get a snack and a vanilla bean latte. It was 90 degrees and we walked 4 city blocks, sweated like pigs, took several rest breaks, and even got sunburned! But, came back with goodies and an 800 calorie latte. But it was sooo hot the calories didn’t matter. Yeah, I thought of every excuse possible to drink it!
The best part of this walk though were the people I was able to observe. There were two stoners sitting on the sidewalk staring at each other’s tongues while sharing a slush puppie. There was also two grandmas in swimming suits driving an old beater car with the stereo on as high as it would go.....Listening to.... RAP.
Oh, I do miss the individuality of city living.
We walked back to the hotel, ate our snack and Maddox took a nap. When she got up I was determined to see something in Rhode Island besides Airport Blvd so we walked some more in the heat and found a shady park.
Note to self, don’t ever eat Chinese food again from an unknown city - especially when you are traveling by airplane.)
That evening and night went really well. Maddox fell in love with the bathtub there and discovered the drain doubles as a mirror. She watched herself splash for 30 minutes. I guess this was much more entertaining than a pool.
I woke Maddox up at 8 and got her ready. We went downstairs to breakfast. I tell you, these people treated the continental breakfast like it was an all you can eat crab leg buffet or something. They were loading plates of eggs and sausage, standing in line for thirty minutes to use the waffle maker and so on. All I have to say is wow...
At 9:30, Sarah Rosenfeld Johnson walks into the lobby.
Have you ever had one of those moments where you know this is going to change your life in some what but you just aren’t quite sure how? That was that moment for me. Butterflies and triumph all at once. I felt like I needed a much better place than a hotel room to host the best of the best. All I could offer was a bowl of Raisin Bran from the glorified continental breakfast!
The evaluation was incredible. Basically Sarah worked with Maddox for about 75 minutes and then we discussed the results and she answered questions for the remainder of the time. As I watched Sarah work and use her techniques, Maddox responded perfectly learning more in 75 minutes than I could have taught her all summer. There were techniques to help her chew and swallow without choking, techniques to improve her articulation, teach her to suck and blow as well and use her tongue correctly.
I had a whole list of questions and Sarah was able to accurately diagnose the reasons behind why Maddox is doing each of these things and has already provided us with an exercise regimen that will improve Maddox’s skills in each area. We are anticipating that by the fourth grade, Maddox will have perfected her articulation skills.
Articulation alone is huge for her. Maddox is proving to be fairly functional. You think about the times in your life when you have spoken to someone with disabilities who is very diffuclt to understand. If you are anything like me, you have probably associated how well you understand that person to how intelligent/functional they are.
Sounds terrible, it is terrible, but unfortunately it’s the nature of what humans do.
So, our goal: by drilling these skills now, we hope to give Maddox the credibility she deserves.
After Sarah left we frantically packed, and took the shuttle to the airport. It was Maddox’s nap time but she wanted to stay up so the fight from Rhode Island to Philly was a little difficult too.
Upon arriving to Philly....Oh boy.
Want to guess who had the first meltdown? Maddox or me?
Yes, it was ME!
My meltdown goes a little like this: I got our luggage and walked to the ground transportation area of my terminal. I waited for the shuttle to the Sheraton Downtown but they were all going to the Airport Sheraton. I asked for assistance, and the gal told me I was in the right spot. I waited some more and went back to her. She said, “Ooops. Keep walking outside until you reach the next terminal.”
It is 94 degrees, we are dressed fairly warm because we always get cold on airplanes but off to the next terminal we walk. When we got there, we found the same situation - all shuttles going to the airport Sheraton. I called the shuttle service on my phone, he told me to walk to the next terminal and call him again. OMG!
I took a deep breath and started off to the next terminal but began to lose it so I sat on a bench, redialed the service and this time he yelled at me, “Quit calling this number, go inside and call from the ground transportation desk!”
Ahhhhh, I am about ready to pass out and he just royally made me mad. I buried my head in my hands and thought, what did I get myself into? I looked at Maddox and she must have had this vibe and knew I was struggling because she hasn’t made a peep. Her face is breaking out and her head is sweating but she is patiently waiting. I have to get her inside I thought, so I regain composure and set off for this phone I am supposed to find. Kind of like finding a needle in a haystack in which I stink at doing so I found a nice cop to show me the way.
See how complicated this was? I had to take a picture of the instructions becasuse I couldn’t remember them all.
When I get there, the shuttle driver starts yelling at me for having a stroller. He throws all my stuff inside the van and makes us sit in the far back which meant Maddox’s car seat had to be lifted (WITH HER IN IT) sideways over two rows of seats. I fasten her in and read the sign on our vehicle.
Look at the patient look in Maddox’s eyes, this was interesting. During this entire time, Maddox never made a peep. She knew that I was under high stress and fed off my vibes I guess. Her calmness was really amazing. She would just look at me and smile even though she was miserable, hungry, thirsty, and hot. What a baby.
I didn’t realize this shuttle was not going to be a direct service to the hotel. Turns out he had 8 different locations to stop at so we were in this warm vehicle for way more time than we wanted to be. The driving was crazy but my prayers were answered with a 5:00 o’clock traffic jam!! We finally arrive to the hotel and Maddox’s diaper bag tips over when the guy pulls it out, and 8 ounces of milk spill all over the diapers, wipes, thermometer, tylenol, etc.... Milk is everywhere.
He tells me I owe him twenty dollars and I was thinking of how badly I didn’t want to give that up! That was my worst ever spent twenty bucks! He grumbled when I didn’t tip him. If I had been brave I would have grumbled back, “Why would I tip a fellow who yells directions at me, gets mad that I brought a stroller, and dumped milk all over our stuff?” Yes, he needs a lesson in how to be more sincere - before I consider throwing 5 hard earned dollars at him!
But YEAHHHHHH we are finally here at the hotel. I get to my room, no fridge no crib so we had to get that all situated. Why I was waiting and setting up for that I had emptied my diaper bag contents to wash and air the contents out from the spilled milk. And yes, I almost cried over spilled milk!
I am going to spare you the photo but I happened to look over at Maddox while I was cleaning. She now proudly displays objects she can carry with her front two top and bottom teeth. Only this time, it was the metal tip to the uhhhhhhh rectal thermometer. Oh dear, gross!
We attempt to get situated and decided we need to eat and walk down to the lobby to get directions to a nearby restaurant. The only thing I wanted to eat while I was here was a real Philly steak sandwich, awesome fries, and cheesecake! I step outside to search for the perfect place only to see something I never anticipated. RAIN. All we have for transportation is a stroller and two feet. Rain is not complimenting us.
I look one block and see a pizza place next to a WAWA (which is a super duper awesome convenient store). I get to the pizza place and realize there are ten steps to get it, what the heck? The ramp is another block so off we run. Finally, we arrive and the two nice guys working there must have known what kind of day it was because he hands me a menu then takes it back and says you know what, we will make you anything you want to eat, what are you hungry for? These guys made a delicious italian meal catered just to us.
Only....... Maddox decided she was too tired to eat and threw a tantrum so we packed up everything in to-go box and left.
Next door to the pizzeria was a WAWA. I had to get some snacks. This WAWA folks was the coolest store ever. It was like a continental breakfast, lunch, and dinner store all combined. We got carrots and dip, grapes already washed, hard boiled eggs, cereal, muffins, cheese sticks, you name it, we loaded our fridge.
A side note, maybe you can explain, but I have never understood why the hotels that charge 160 dollars a night have a restaurant you have to pay to eat in but the hotels that charge 70 dollars a night have the best free breakfast ever???
Anyhow, we had enough food for the next two days from the WAWA not to have to leave our room. Good thing because it rained and rained at each meal time. I never did get that dreamy Philly meal I wanted! Scott said he would make steak sandwiches for me when I got home. :o)
Monday 1, 2011
Maddox slept until 9, yea, and then we headed to the outdoor pool for a few hours where we both lounged in floaties. After the pool we went back to the room, had a few WAWA snacks and took a power nap to build up energy for the PLEASE TOUCH CHILDREN’S MUSEUM.
We hailed a cab, that was so much fun, for real I mean it. There is no other time in your life that you raise your hand and immediately someone responds.
The cab ride was much more delightful than the shuttle other than our close encounter with the mail truck and the lack of air conditioning. The fan was not not cutting it.
I was not sure if Maddox was going to have any fun here. I thought maybe she would just watch the kids while I played but it turns out she had a blast.
Tuesday 2, 2011
Today is the day we had been waiting for. I woke up early and got everything ready for all the doctors and therapists. I had foot braces, genetic reports, speech evaluations, developmental profiles all ready to hand to the right people for their opinions. I had over 40 questions for the professionals.
I woke Maddox and prettied her up, this was going to be a day of great therapists, great doctors, high end research, etc...
I walked to the hospital and we found our way to the Trisomy 21 clinic. They got my right in at 8 and I was there until 12:15. Four hours of testing, questions, therapy, observations with the doctor, speech therapist, OT, and PT. The longer I was there, the less impressed I was.
Every single disciplines did a STANDARDIZED TEST.
The Doctor did the Bailey to look at cognitive function, the Speech Therapist did the Preschool Language Scale, the OT and PT did portions of the peabody.....(All assessments that have already been done on Maddox.)
A standardized test is an assessment administered exactly the same each time to get consistent results. It is designed so strictly that anyone with training should be able to give it.
You know what this means?
I traveled halfway across the US to get exactly the same testing that my team in Michigan has already done!!
I didn’t go sour yet, I gave them a chance. I started asking several research based and down syndrome based questions hoping to get some answers specific to down syndrome development. I wanted to know where the industry was in the process of studying growth hormones, what they thought of Chemical Replacement Therapy and if the research supported this, I wanted to know what the 13th band had to do with the triplication of chromosome 21. I had some serious questions that I wanted state of the art input on.
Nope, nada, they referred me to my local doctor. What the heck?
I don’t want to discourage their program for others but for me personally, I didn’t learn anything productive and did learn that I have an amazing team waiting at home. A friend on my facebook page said, “The home team is the best team” and I couldn’t agree more.
The reports that were given to me were generic and based on my report. This was not the resource we needed but it may be for someone else. I think I would have learned more during the four hours sitting with the other moms in the waiting room.
I was so discouraged whenI left that we started walking and kept walking, no where in particular. After a mile or so we decided we were starving.
I have a little trick I use more often than I like to admit - but I use it when ever I am not sure where I am going. It has yet to fail me. You see it started when I would drive from Nebraska to Michigan and I find myself a little lost in Chicago. My bold move was to find and follow a car with Michigan license plates and pray like heck that is where they are going.
Today, as I couldn’t think anymore, my mind was done, we were hot and hungry I decided to try my plan out. I found two businessmen that looked like they were on their way to lunch and followed them.
I’M TELLIN YA, WORKS EVERYTIME...BOOYA
We ended up at an express food court with a Quizno’s, Taco Bell, Pizza place, etc... all confined in one air conditioned building. We ate, found our way back to the hotel, packed quickly, hailed another cab (so cool), and set off to the airport with three hours to burn there. While exploring I came across an.......
We flew to Detroit and had an hour to wait there. Lets just say that an hour with a child is a much faster ticking hour than when you are traveling alone. By the time I got her loaded in the stroller and found our gate, we had 40 minutes left.
I had to change a poopy diaper and find a restaurant that would sell us two glasses of milk and before I knew it, we had 15 minutes left. I bought Maddox some dinner and fed her as quickly as I could, leaving me about 5 minutes and then I heard my name on the loud speaker.
Oh geesh, now what?
Yes everyone, I lost my photo ID. What else huh?
Thank goodness for the nice gentleman who would much rather me have my ID than steal it, we were on our way to board right as scheduled.
The story is not over yet by far. The plane we get on is kind of hot. Turns out it has not run in two weeks and the air conditioning is broken. It had to have been 90 degrees in the tiny puddle jumper of a plane and I had a sweaty tired baby trying to nap on me. After 40 minutes I just had to ding that stewardess bell and ask if there was a cooler place on the aircraft because by this time Maddox didn’t have any clothes on and if we were to go five more minutes, I wasn’t going to have any on either! We moved to the back of the plane where there was a fan blowing hot air. We were there for 20 more minutes and the last straw was when they had to shut all lights and air off for the final fixings.
It was like a scene from Final Destination, where you had premonition the outcome was going to be bad. The plane was pitch black, the stewardess had a light shining on her, it was raining out, and we were all sweating to death.
I contemplated getting off the plane but darn it we were 45 minutes from home....and I only had three diapers left.
At 1:00 AM I pulled in our driveway and was greeted by the best husband of all who waited up for us.
Home sweet home, another adventure in the books.
If you want more details on how any of the appointments went, please contact me.