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

Proudly Introducing....

Meet Harlynn June!

 

 

She arrived on Saturday, February 9th at 7:48pm. She was 7 pounds 8 ounces and 19.5 inches long.

She is already nearly 3 weeks old and is such a sweet, sweet baby. Big sister Tennyson seems to enjoy her company and gives her kisses when we hold the two of them close together (although it looks more like Tennyson is licking her...we'll work on it).

At her two week checkup on Monday she was up to 8 pounds 10 ounces, and people were already mis-pronouncing her name. It seems pretty straight forward to me, but apparently it looks like "Harlene" to some people. I know we chose unique names for our girls, but I don't think they are difficult to pronounce.

 

My labor and delivery experience couldn't have been better. I was able to have a successful VBAC after my water broke late Friday night. I had accepted that I would likely have another c-section since I felt no signs of labor, even after a physical exam at the doctor Friday morning. I'm so thankful that I didn't have to have another c-section. My recovery has been dramatically different and I was really lucky to have a great team of doctors and nurses that were supportive of a VBAC. I also used a doula this time around and was very happy with my decision.

We've been spending our time with visiting family and finding a new routine. Continuous sleep is definitely not in my immediate future, as it has been replaced with plenty of baby snuggles and late night feedings. Harlynn is close to outgrowing newborn clothes already. It's been fun putting her in Tennyson's old clothes. I looked back through some old videos of Tennyson and realized that Tennyson didn't even start wearing newborn clothes until she was 4 or 5 months old! Crazy!

Speaking of our big girl...

Tennyson has plenty of quarterly appointments coming up including orthopedics, neurology, GI, and nutrition. I'll be curious to see what her orthopedic doctor has to say about her hips. We will get to see an x-ray for the first time since her surgery. I am really hoping there has been dramatic improvement.

We are also looking at new equipment for Tennyson. She is outgrowing most of the equipment we have now, since she received it when she was about 15 months old. We just received her new stander and I love it! It's wild to see how tall she would be if she could stand independently. She looks good in it and is tolerating it very well.

I'll try to blog more regularly as time allows. Thank you for all the congratulations! We appreciate all the well wishes and sweet gifts that have been sent!

Amy

tennsense@gmail.com

An Everything Update

I took a few weeks off from the blog, so let's catch up!

Christmas was quiet this year. We decided not to travel home to Washington for the holidays since I'm in my third trimester, high risk, and had no guarantee an airline would let me fly. It ended up being in every one's best interest since Tennyson and I both woke up with colds. No fun. We spent the day in our jammies and took multiple naps.

A few days before Christmas, Tennyson had her first school Christmas program! It was adorable! All the kids were dressed in their cute Christmas outfits, and Tennyson's class wore little reindeer antlers. Even though she didn't sing along, she stood up in her gait trainer (walker) with her class when it was their turn to sing. She did awesome! She also got to see Santa afterward and she's still not a big fan.

I usually have Tennyson's picture taken professionally each year on her birthday. I'm a few months behind, but decided to combine her yearly pictures with Christmas pictures. I love how they turned out. I almost never keep her hair down (because it ends up in her mouth), but even I was surprised at how long it has grown.

Now that winter break is over, Tennyson will be starting extra physical therapy after school. Tennyson receives physical therapy at school through the states early intervention program. Therapy sessions focus on school oriented goals. Her therapists work with her in the classroom and it's been a really positive experience. The physical therapy she will be getting after school will be more rehabilitative. It will focus on building her strength back up in her legs as well as her core muscles. Hopefully the extra therapy will also help her build up her stamina and endurance.

My pregnancy has continued to go great. I am now in my 35th week. Tennyson was born at 35 weeks 1 day. Everything from here on out is new territory for me.

I was grateful to have another growth scan yesterday and I was also able to see my doctor. Baby girl is growing well and is an estimated 5lbs 8oz. (nearly double what Tennyson weighed when she was born). Even though her growth measured within normal limits, I was concerned that her measurements placed her at a gestational age of 33 weeks 6 days. Her head and tummy measured around the 50th percentile, which told the doctor the placenta is doing it's job. Baby is moving well, and often and that brings me peace of mind. I'll now have weekly appointments beginning next Friday until my due date.

My doctor encouraged me to try to enjoy these last few weeks of pregnancy. I have been anxious these past few days, remembering what happened with Tennyson at this point in my pregnancy with her. I know our family has so much to look forward to in the coming weeks and throughout 2013, and I am really excited to meet our little girl!

"Free me from the past, Lord. I spend too much time there...draw my attention back to the life in front of me. Do not let my mind slip to the past, except to count the times you have blessed me. Then I must move on. My past serves my future...it is a foundation for all days that follow. Now, I must invest my time, my dreams, my prayers on the future You have carved out for me."

Happy New Year! The best is yet to come!

Amy

tennsense@gmail.com

{Day Seven} Seven Days of Giveaways!

Thanks for celebrating the blogs birthday with me this week! Congrats to all the winners so far!

The winner of yesterday's giveaway is Damion!

(I used the random number generator at www.random.org)

Here is the last giveaway: Crayon Roll (Girl - colors are blue, pink, and green)

 

To enter:

1. Just leave your first name and e-mail address in the comments section.

2. If you win, I'll send you an e-mail and get your mailing address.

3. You can also e-mail me if you have trouble posting your entry, and I'll make sure you are entered:

tennsense@gmail.com

4. Giveaways are open to everyone - family, friends, new readers, faithful readers - everyone!

5. Let me know if you have any questions!



Amy

tennsense@gmail.com