Tenny and the Upsee

When you have a child that has a brain injury, people are quick to assume what your child probably won't do. Doctors tell what you shouldn't expect. But I can't stop wanting Tennyson to have every opportunity that any other kid gets. I want her to have true friendships, and fun, and enjoy playing, and love learning and being outside.

I will be her voice, her arms, her legs; because she is my heart.

We are one of four families in the United States that have been able to trial the Upsee, a new product by Firefly.

Here is a video of Tenny using the Upsee:

I know a lot of people reading and watching this are new here and may not know much about Tennyson, so let me take a moment to tell you a little bit about her.

Tenny is 4 1/2 years old. She was born early (at 35 weeks), delivered by emergency c-section after she stopped moving. She was growth restricted and weighed just 2lbs 15oz. It was determined she suffered a lack of oxygen at some point which resulted in brain damage. Her gross motor skills have been severely affected. Her main diagnosis is spastic quadriplegia cerebral palsy, but she has many others. At this time, she is unable to sit independently, crawl, stand, or walk. Cognitively she is very aware and she is a beautiful, happy, smart, social girl.

(That's the short version)

Here is my honest review of the Upsee:

(full disclosure - I was not paid any money to review this product, however, 

we were sent a prototype to trial and use. I don't have any inside connections to Firefly - I just answered an e-mail I saw looking for participants to trial new products.)

Because Tennyson has very little gross motor skills, I was skeptical of the Upsee. But the Upsee has been a game changer for Tennyson. The Upsee makes it easy for teachers to include her in activities more completely. I'm lucky - I don't have to fight battles and win wars for inclusion like some parents do, but there is a difference when Tennyson can "dance" into circle time with everyone else, as opposed to being wheeled in.

The first time we used it, I found it emotional to see her standing. To be seeing how tall she was and what it would look like if she could stand. (so prepare yourself for that!)

We were instructed to use it on a weekly basis to optimize possible benefits. I would say she realistically uses the Upsee three times a week. I send it with her to school everyday and tuck it into her cubby with her backpack.

It's not heavy, but it's very high quality. It's durable! The fabric doesn't stretch, but the buckles and straps make it very adjustable for both the adult and child to ensure a good snug fit. It's also a cute denim type material with either pink or blue accents for a girl or boy.

It feels secure. I didn't feel like I was going to fall over, but you do need to take slow, deliberate steps. Basically, I wouldn't run in the Upsee.

For those who are wondering how big Tennyson is - she is 28 pounds and 39 inches tall. We have plenty of room to grow with this Upsee. 

How did it help?

We have seen improvements in Tennyson's head control and her ability to actively weight bear on her legs. We will continue to use the Upsee regularly and I anticipate more improvement in each of these areas.

Would I recommend the Upsee?

Absolutely, without a doubt, YES!

I need to give a lot of credit to Tennyson's therapists and teachers. We have a pretty awesome village of people that invest their time, love, and energy to make sure Tennyson has great opportunities. They were open minded and ran with the opportunity to try the Upsee and used it regularly in therapy and in the classroom. (And they took video so I could see it all!)

Those were real firsts for Tennyson in that video - walking on snow for the first time, kicking a ball on a playground, pushing a toy shopping cart, "walking" and holding hands with her friends, standing and playing a drum, pushing her own wheelchair. I saw each of those short videos individually, but when I saw them all pieced together for the video, I realized what incredible opportunities the Upsee gives kids who don't have gross motor skills. It gives them a chance to have the experience.

How much will it cost?

If you're ordering from the United States, the cost will be $489.00 which includes shipping. 

When can you buy it?

It launches on April 7th for the United States! Firefly would like you to sign up for one of their 3 webinars so that they can release more details to people who are interested in purchasing the Upsee.
I'm signed up for April 2!

Feel free to e-mail me at tennsense@gmail.com with any questions or leave a comment. I'll do my best to fill in any information I've left out!

Amy 

How We Did It: Europe with Kids!

*Let me preface this post by saying this is aimed to be more informative for families traveling with children who have special needs. So you might think it's boring unless you are really curious to know how we did it! Feel free to add any great travel tips in the comments!*


Yep. We did it. We took our 5 month old baby girl and 3 1/2 year old daughter with special needs to Europe. It was a huge undertaking, and took a lot of planning, but it was SO worth it. We flew from North Carolina to Washington state, took a road trip down to Oregon, flew to Paris, took a train from Paris to Germany, flew from Germany to Rome, and ended the trip with a flight back to North Carolina.

Sure, our girls probably won't remember a thing from the trip, but we will. We have those memories forever. Funny stories that make us laugh until we cry. It was definitely worth it.

I wasn't nervous to take Harlynn (our then 5 month old - now 6 month old). Wait, I take that back. I did have one worry about Harlynn. I worried that people would see her and think she was so cute that they would snatch her and take her from me. I'm being totally serious. That thought went through my head. Other than that, she was an easy traveler. Her clothes were so tiny they hardly took up any room, and she is breastfed, so I didn't have to worry about packing formula or bottles.

I was very nervous to take Tennyson. I worried she would get sick. I worried that she would need to go to the hospital. I worried she would have a seizure. I worried that I would spill her medicine and not be able to get a refill. I worried about the language barrier. I worried that people from a different country would be cruel to her, stare at her, and treat her poorly. I even worried that people would take her from me. (Apparently having my children taken was a very real concern before this trip!).

I wondered how countries that usually institutionalize their children with disabilities would treat my daughter. So let me tell you about our experience. People stared. People stared in Paris. People stared in Germany. People stared in Rome. Just like people here in the United States stare. So no real difference there. People in Germany stared a lot! And they don't care if you catch them doing it. They just keep on staring. Haha!

People were not rude, or cruel. People were helpful and kind. We had a wonderful experience in Europe. And nobody tried to steal my babies.

Most places in Europe make accommodations to people with disabilities whenever possible. Jumping to the front of lines and discounted ticket prices at monuments are just a few examples. Sometimes, it's just not possible to find a wheelchair accessible ramp in Rome though, and we were prepared for that.

So here are my tips for a successful trip:

HOTELS

I booked our Paris and Rome hotels on booking.com. I would use this site again. I liked that you can click on which amenities are important to you. I had very specific guidelines of what I needed for a hotel. It had to have air conditioning, a fridge for Tennyson's medications, a bathtub, and an elevator. Another feature I liked about this website is that you can read reviews from a specific demographic. I focused on "Families with small children" when I was considering a hotel. They were really helpful! I liked knowing ahead of time that the staff in Paris spoke English. The inside scoop from people who have been there can help you decide if a hotel is right for you!

The view from our Paris hotel room

We found that a mini bar fridge worked fine for keeping our medicines cold, but I could tell it wasn't quite as cold as what it would have been in the USA. Make sure to buy european outlet adapters so that you can plug in electronics. We traveled with three (one for Tenn's feeding pump, one for the iPad, and an extra one for our cell phones).

Space is a commodity in Europe so be prepared for the worlds tiniest elevators, bathrooms and hotel rooms. Tennyson's adaptive stroller barely fit in the Paris hotel elevator and did not fit at all in the Rome hotel elevator.

AIRLINES & FLIGHTS

We flew with Southwest Airlines initially to go from North Carolina to Washington state. They allowed us to pre-board ahead of everyone. We had to request a blue pre-boarding pass, but they were very accommodating.

On Southwest, there are no assigned seats. We chose the bulkhead. Sitting in the bulkhead had it's advantages. More legroom, Tennyson couldn't kick the back of anyone's seat, we could quickly change her on the floor without anyone really seeing what we were doing (since she wouldn't fit on any changing table in an airplane bathroom). We put Tennyson in the middle seat, and I took the window so I could breastfeed Harlynn with some small degree of privacy and my husband took the aisle seat. This way we could both provide Tenn with some support to sit comfortably. It was also great to be the first off of the airplane, but we quickly realized it didn't really matter since we had to wait for Tennyson's chair to be brought to us each time because it was gate checked. Disadvantages were minor. You can't put anything under your seat, everything has to be stored in the overhead bin and you don't get very good trays. They are tiny trays that come out of the arm rest, which means your arm rests don't come up at all. Bummer.

The other airlines we flew were United, Air Canada, and Lufthansa. We had excellent experiences with all of these airlines. We were always able to pre-board ahead of everyone. One thing we realized quickly was that we needed to give ourselves plenty of time. Each time we had a flight, we gave ourselves about three hours. This allowed us to check our bags and the girls' carseats, tag both strollers to be gate checked, get through security - which takes a little bit longer when you are traveling with liquid medications and a feeding pump, and children in general (we always found the "Travelers with Limited Mobility" lane and we were not as rushed and we didn't feel like we were holding up other travelers). With the extra time we were able to find our gate, get something to eat, change the girls if they needed, feed Harlynn, give Tennyson her meds and set up her feeding pump. It made a huge difference to not feel rushed.

We never had any issues traveling with Tennyson's medications or feeding pump. We carried a small suitcase with two coolers inside; one for medications that needed to stay cold, and one for medications that could stay room temperature. I used four large re-freezable ice packs for our refrigerated meds and it worked out fine. In the room temp cooler, I had plenty of clean syringes, as well as a 2 day supply of formula in case our bags were ever lost (which never happened).

We traveled with a letter from one of Tennyson's doctors on official letterhead, just in case anyone tried to give us any trouble about her medications or feeding pump. This letter explained what medical equipment we would be traveling with, as well as a list of all her medications and stated that all were medically necessary. Make sure you carry this in one of your carry on bags. Don't check it.

Since we were always first to board, we had about 30-45 minutes of waiting to take off while everyone else boarded. I always used this time to nurse Harlynn and most of the time she fell asleep right afterward, making takeoff a breeze.

On a previous trip, we put Tennyson in her carseat. It's a big carseat and it was a pain to lug around and an even bigger pain for her to sit in it on an airplane. It left her no leg room and she couldn't have her tray fold down. Learning from that experience, we knew it would be easier and more comfortable to have her just sit in the airline seat. She was propped up with blankets on either side of her. To make sure she didn't slide down, we folded  a blanket into the shape of a triangle, put her butt in the middle of it and pulled the pointy end up between her legs and buckled her seatbelt over the top of it. You can kind of see it in the picture above.



COMMUNICATION

Our entire family met in Germany for one big family vacation. Prior to meeting up we all went to different countries in Europe. In order to be able to communicate, we all downloaded the WhatsApp app on our cell phones. This allowed us to send texts, voice messages, pictures, and short video to each other over wifi connections, since our cell service didn't work.


SUPPLIES

The first leg of our trip was a two week stop in Washington state to visit our families. I had our monthly resupply of formula and supplies sent to to Washington, so I didn't have to pack a months worth of supplies from home.

Also, we met up with family currently stationed in Germany in the middle of our trip. A month before our trip, I purchased diapers and wipes for both girls. I mailed a package to Germany ahead of time with formula, syringes, feeding bags, diapers and wipes. It was nice to have it all waiting for us when we arrived. We still ran out of diapers in Rome, but there were children's stores and supermarkets that made it very easy to find diapers.

We requested a 2 month supply of each of Tennyson's medicines just prior to our trip. About a month before we left, I contacted our pharmacy and let them know about our trip so they could order enough of each medicine for us. Even though we were only going to be gone a month, having a 2 month supply gave me a little wiggle room in case anything happened to her medicines.

If you are going to be traveling in the summertime, pack plenty of sunscreen and an umbrella to shield the sun. It makes a big difference. On really hot days, we brought a washcloth from the hotel so we could wet it down and cool the girls off.

TIME ZONES

Our girls had a rough transition with the time zone changes. To start, we flew from the eastern time  zone to the pacific time zone. This one didn't shake up their schedule too much because it was only a 3 hour difference. But when we flew to Europe from the west coast it was a 9 hour time change. They were awesome on the flights and I tried to have them sleep as much as possible since it would be morning when we landed in Paris. It just didn't work. We were all exhausted and it was the middle of the night back home, and we couldn't help but sleep.

It took Tennyson a good 5 days before she had fully switched over to the right time zone. She would stay awake until 4 or 5am before falling asleep, which translated to her normal bedtime of 8pm back home.

It also was an adjustment because we were all sleeping in one room (which believe it or not, we don't do on a regular basis at home). We heard every little peep they made and vice versa. It would be really quiet for a little while and I'd peek at them, crossing my fingers they would be asleep and both of them would be wide eyed looking right back at me. Sigh. So be prepared for time zone transitions to take a few days.

It was adjustment when we came home as well. Tenny woke up for the day around 2am for a couple days, then it moved back to 4am, and finally it went back to her normal schedule.

IN CASE THEY GET SICK

On the third day of our trip to Washington, Tennyson came down with a cold. At first it wasn't bad, a few sneezes and coughs, but then it started to sound bad and a high fever began. We were pretty confident it was just a bad cold, but we needed to make sure it wasn't something more serious before we flew to Europe. The day before we left for Paris, we made a stop in the emergency department for a breathing treatment of albuterol and a chest x-ray to rule out pneumonia. It was just a bad cold, but she was given some antibiotics for safe measure. Her cold cleared up pretty quickly after that and she stayed healthy throughout the rest of our trip.

Tenny getting a breathing treatment

One thing I did before our trip at the recommendation of Tennyson's doctor was research locations of children's hospitals nearby at each of our destinations.

We also purchased trip insurance through Allianz Global Assistance. This would have allowed a refund of our tickets in case our trip had to be canceled due to hospitalization. It also included a clause that would cover emergency air travel back to the United States if any of our family members needed. It covered lost baggage, delayed baggage, emergency medical and dental, ticket changes, etc. We paid around $300 for it, and although we didn't have to use it, I think it was a good backup to have.

The best advice I can give though, is to have patience. Lots and lots of patience. Having a good attitude and very little expectations are a must. But you can do it! My husband and I said before we left, that if anything, we would come away with some great stories, and we did! Our moods rubbed off on our children and for the most part they were very easy, go-with-the-flow travelers.

Safe travels!

Amy
tennsense@gmail.com

Aunt T and Tenn Reunited!

Aunt T and Tenny had a fantastic reunion in Germany!

(Bad Windsheim, Germany)

The day we arrived in Germany, we had to take 4 trains to get to our destination. The train system in Europe is a little confusing at first, but we got the hang of it. We made it to our destination at 11:30pm (which is why the girls are in their jammies), rather than 8:30pm. Tenny looks like she's in shock that she's really seeing Aunt T again! She was really excited. 

It was the sweetest thing to see these two together again! (Rothenburg, Germany)

In Nuremberg, Germany at a castle taking a nap in Aunt T's arms

In Wurzburg, Germany

We miss you all over again, Aunt T!

*For those who don't know why Aunt T is such a big deal around here - she is my sister-in-law and lived with us for nearly 9 months while my husband was deployed. She just recently moved back to the west coast when my husband returned from his deployment and we still miss her a lot. 

tennsense@gmail.com

Amy

To Aunt T, With Love

 

Dear Aunt T,

 

Right now, you're somewhere between North Carolina and Arkansas, making your way back to the west coast.  The house felt different without you here this morning. A little more chaotic for certain, as I juggled getting all three of us ready and out the door. We miss you already. I talked to Tennyson again and told her you had to go bye bye, but we would see you again soon. I know she will be sad when she gets home from school and you aren't here.

 

There a handful of people that I can truly trust with my girls. You are one of them. Aside from your brother, you are the closest anyone has come to being completely interchangeable with me. I am forever grateful you re-arranged your life to come and help us. Nothing you helped me with went unnoticed.

 

Thank you for getting Tennyson out of bed each morning when she was in her full leg casts. Thank you for helping me change her bandages and diapers. Thank you for going to her countless doctor and therapy appointments with me. Thank you for holding her hand as she had her casts removed. Thank you for always finding a way to get Kipper the Dog to play on your phone when she had lost her patience.

 

 

 

Thank you for learning how to work her chair, stander, leg and foot braces, and feeding pump. Thank you for picking her up from school when I needed you to. Thank you for watching her so that I could run errands or grocery shop. Thank you for watching her when I had doctors appointments. Thank you for making sure she had all her medicines and feedings when I was in the hospital when Harlynn was born. Thank you for the thousands of diapers you changed. Thank you for giving Tenn a bath every night at 6:30pm (and making it fun by rapping Justin Bieber to her).

 

 

 

 

More importantly though, thank you for loving my girls. Thank you for simply holding them and giving them attention. Thank you for playing your guitar to Tenn and letting her try to play with you. Thank you for taking her on walks. Thank you for taking her running with you. Thank you for spending your time with her. Thank you for taking the cutest pictures of her. Thank you for making her smile.

 

 

Thank you for spending Halloween, Thanksgiving, Christmas, New Years, Valentines Day, and Easter with us. Thank you for celebrating my birthday with me. Thank you for giving me flowers on Mother's Day.

 

Thank you for getting up each morning to sit with Harlynn while I took Tenn to school. Having another adult to have dinner with and watch T.V. with and laugh with made each day go by easier. Thank you for sharing the weight of a deployment with me. You not only made this deployment manageable, you allowed me to be a happy Mom to my kids.

 

 

Every child deserves to have an Aunt like you. And every woman deserves a sister-in-law like you.

 

We love you. Drive safely.

Home

He's home!

 

 

A New Direction

Raise your hand if you're sick of checking the blog only to see that I STILL haven't posted in two months. (I'm raising my hand, too).

I promise I'm not going to apologize for not posting, overload you with a bunch of updates, and then disappear for two more months.

The truth is, when I started this blog I was in a different frame of mind than I am now. I was just reaching a point of acceptance in terms of Tennyson's cerebral palsy, her birth and the extreme guilt that I felt over it, and finally feeling ready to share about it all. I can honestly say back then, "special needs" felt like the focus of our time and lives. That's just not the case anymore.

We're just not feeling "special" anymore. And that's a good thing.

Therapies and doctors appointments are a weekly occurrence for us, and that's just our normal. It's not going to change anytime soon, and that's okay.

I also have a little secret I've been keeping.

Last August, just as I finished up my first trimester of my pregnancy, Tennyson's Dad was deployed. This is no secret if you know us personally, but I chose not to share it on the blog for a number of reasons. It's been hard for all of us to have him gone. That's why Aunt T moved in with us.

Aunt T and Tenn on a walk

 

Being a military family on top of having a child with special needs and a newborn is no walk in the park. This is our third deployment, but my first one with children. And there is already another deployment in the distance.

But we're about to get Dad back! We can't wait! He was able to come home briefly for Harlynn's birth, but had to leave when she was two weeks old. He's missed some cute firsts (smiles, laughs, rolling, cooing). He's ready to finally get to know her adorable personality, and to be reunited with Tennyson. We're ready to see what being a family of four is really like.

Harlynn is 3 months old already!

So, you can see that our family is in a different place than we were when we started the blog. The blog will still be focused around Tennyson, but will not focus so much on her special needs. We've evolved and the blog will also. Hopefully I can share with you how we adapt our activities, vacations, and everyday life to include Tennyson completely. She is more work, but she is not hard work. It is not hard to love her or hard to do things with her. She takes more time, but it is most definitely time well spent. We're learning to balance these two worlds of typical and "special needs"; teaching Tennyson to cheer for Harlynn when she does something new, and teaching Harlynn to cheer for Tennyson when she is working hard to learn something new.

We are working on new therapies and assistive technology for Tennyson. We have chosen some new equipment for her, and most recently we have had to fight a few battles to keep her respite nursing care. We are also preparing for a trip to Europe with both the girls. We've been busy!

So don't give up on us - I will be sharing more regularly. Promise!

My sweet, happy girls

 



A Whole Bunch of Snippets

Given the fact the blog has been sorely neglected for nearly a month, a long list of snippets is in order.

---1---

Let's start with some good news! (old news for those who follow us on facebook). Tennyson had her follow-up appointment with her orthopedist who performed her hip surgery last October. The appointment went great. Tennyson had an x-ray taken of her hips and he was able to compare it to the x-ray from last September. Her hips have improved dramatically and are nearly completely back in the sockets. He was so pleased with her progress, he said he didn't need to see her for a year!

---2---

Tennyson had a weight check and didn't gain or lose any weight - which isn't bad and isn't good. We have another weight check in 3 weeks.

---3---

Hippotherapy is starting up again now that it's spring time! Her school arranges for her to go once a month. She didn't get to go to all of her sessions last fall because of her surgery. I wonder if she'll like it now that she is more flexible?

---4---

Tennyson caught a simple cold two weeks ago. She was out of school for a week, and has just now kicked the cough. It's so frustrating that a simple cold can take her down.

---5---

Our entire family is planning a trip to Europe this summer! In preparation, we all had to get our passports. Getting Tennyson and Harlynn's pictures taken for their passports proved to be a little more difficult than I thought it would be.

Day 1: At first, they told us Tenn had to sit (ha!), unsupported (what are they nuts!?), look straight at the camera (maybe after 50 pictures!), and not smile (she nailed that one). Eventually, after explaining Tennyson's medical diagnosis, they said they would take it in her chair, with the white background behind it. It took a few tries, but eventually, they said they had one that would work.

Harlynn slept peacefully while we laid her on a white sheet and snapped her cute photo.

Day 2: We received a phone call saying neither of the girls' photos were acceptable so we had to come back and have them taken again. I was dreading going back since it took nearly an hour the first time (for two little pictures!). The second time went pretty quick. Tennyson was very cooperative. Harlynn was completely annoyed to be woken up, but we were able to get her head shot, which I'm sure she'll hate me for when she's old enough. Baby acne really comes on strong at three weeks old.

After filling out all the forms and finally getting the pictures, I took the applications in. The photos are required to be 2x2 inches. Tennyson's (of course) was 1 1/2 x 2 inches. Seriously. They told me I could send it in and hope they accepted it, or I could pay for another picture to be taken. I had them re-take it and I'm crossing my fingers that they accept it and issue her a passport.

If anyone has experience traveling internationally with a special needs child, I'd love to hear from you!

---6---

We just received notice from the Duke cord blood bank (Carolina Cord Blood Bank) letting us know that Harlynn's cord blood was successfully banked. I am so excited we were able to have this done!

---7---

At Tennyson's last neurology appointment, we were given the green light to wean Tennyson off of one of her three seizure medicines. I don't think this medicine ever did anything to control her seizures, but I'm still nervous to start weaning her off of it. I've waited until she wasn't sick to start the wean (which will take two months), but I'm really not looking forward to it. It will be awesome to have one less medicine to give her though.

---8---

Harlynn is six weeks old! I just ordered her birth announcements. Mom of the Year right here.

---9---

Tennyson has an eye doctor appointment on Wednesday. I don't anticipate anything to have changed with her vision, and she will hate have her eyes dilated. We will be ordering her new glasses and sunglasses. Hopefully they have something cute for her.

---10---

Check out this adorable picture of Tenny. She's soo cute!

---11---

We are still looking at new seating options for Tenn. She is currently in an adaptive stroller (Kimba by Ottobock). I have requested to see a few demos of equipment that might work well for her. I have to see them to really know if it will work for her. She'll have to use whatever we choose for at least a couple years. We are looking at the Mygo by Leckey, the X-panda with Combi frame, and the Spark pediatric wheelchair. We want Tennyson to be eye level with her peers, but want it to be easy for us to push her in as well.

 

---12---

Tennyson is on spring break this week = I am definitely going to be tired this week.

---13---

March is cerebral palsy awareness month. I just realized this and there is less than a week left of March. I can't keep up with all the awareness ribbons/colors, and awareness months for Tennyson's diagnosis'...but CP's awareness color is green, in case you were wondering.

---14---

I was put in contact with a rep from an assistive technology company. We are starting the long process of trying to find Tennyson a way to communicate with a device. I am hoping Tennyson's speech therapist and our new contact will be able to work together to find something that works for her, that our insurance will cover.

---15---

Certain Proof: A Question of Worth is a new documentary that you MUST SEE.  It follows three children with quadriplegia cerebral palsy (what Tennyson has) and their journey to prove they are smart and can learn in a regular classroom. People assume ignorance rather than intelligence if children can't talk or walk. Watching this made me realize I need to find Tennyson a way to communicate as soon as possible. She's smart, and she needs to be able to communicate. I have to help her find her voice. Check out the trailer for the documentary here.

Amy

tennsense@gmail.com