Tennyson's First Day of Pre-School

We made it! It went far better than I could have hoped. She did wonderful! After all the comments I received from other moms who had been there and done that, it was like a right of passage to cry when I dropped her off this morning.

When we arrived I could tell Tennyson was a little confused about what was happening. Her nurse helped me try to get her comfortable and seated in her chair, but she was already starting to fuss. Her nurse said she would just hold her and put her in her seat when she was more comfortable. I am so thankful that Tennyson was able to have her nurse with her. It made me feel so much better.

Tennyson with her nurse

On my out I had to check some medicine at the front office and that's when it got a little awkward for the secretary. She asked for my phone number and I could barely get it out! Then I saw Tennyson's physical therapist (who we LOVE!) and I almost made her cry, too! It was definitely time for me to go.

Tennyson had her feeding therapy with the other kids and did well. She took three bites of applesauce and a drink of water, which is pretty good for Tenn! Circle time was next on the schedule and her wonderful feeding therapist snapped a picture of her.

Tennyson during circle time watching her teacher

Her nurse said that Tennyson painted a picture of a clover and they made green pudding (but Tennyson didn't want to eat it). She said they included her in everything. Even when she started to get tired and fussy, she was still interested in what everyone was doing. They sang songs for her when she would get upset. I was so happy to hear it all went so well.

When I came to pick her up she was in her walker finishing up physical therapy. I said her name and she looked up right away and smiled. It was so sweet! I'm so proud of her! Since I didn't get to take nearly as many pictures as I hoped in the morning, I snapped a few once I got her in the car to go home. It was a good day.

Amy

tennsense@gmail.com

Tomorrow is the Big Day!

Tomorrow is Tennyson's first day of pre-school! I guess it's really "pre" pre-school, since she's only two and a half, but it still feels like a big milestone for her. I'm the only one who thinks so  apparently since my husband looked completely freaked out that I was teary eyed about it the other night! :)

I'm not sad she's going. I'm excited for her! But I'm so anxious about her being away from me for the first time. Honestly, I shouldn't be though. She's going to have her own personal nurse with her for the entire 4 hours she's there. That's right - it's only 4 hours. What am I so nervous about?!

Today we went with her nurse and my husband to see her classroom and meet her teachers and the other children. We arrived just as circle time was beginning so she was able to join in for a few sing-along songs. It was adorable!

She already had a little cubby labeled with her name on it and had an assigned seat at a table with her name on a four leaf clover place mat. She looked genuinely interested in everything going on around her. 

I've got her outfit laid out. The camera is charging (so I can take waaaaay too many pictures. Her backpack is packed. I labeled her tiny little coat with her initials. And I have way too much stuff to try and shove in that dinky little cubby.

The neat thing about her going to pre-school is that she will get to receive some of her therapies while she is there. Tomorrow she will get to have feeding therapy during snack time. Lately, she thinks it's really funny to watch people eat. So I'll be curious to see how she does surrounded by kids her age enjoying food like it's no big deal. 

I'll be back tomorrow to share how it all goes (and of course pictures!). I'll be praying for no tears - for either of us!

Amy

tennsense@gmail.com

The Hours Between Us

A few short hours. The only difference between your child and mine is just a few hours. Your child had oxygen and Tennyson did not. When Tennyson was born the nurses told us a few hours more and she wouldn't have made it. I remember thinking a few hours earlier and we wouldn't be in this situation.

I was taken back to this realization last week while having dinner with a dear friend. She told me of a mother who carried her baby for 38 weeks. She gave birth to a sleeping baby. While she was telling me the story, I kept thinking how heartbreaking it would be to go through that experience. It reminded me of when Tennyson was born.

I was only a few hours away from that being our story. I was a few hours from never knowing this miracle who is our daughter. Hours from never being able to watch her grow up. 

I'm sure the mother from the sad story would give anything to look into her little baby's eyes. I'm sure she would rather have her baby here in her arms. Even if it meant rocking her in the NICU; even if it meant hearing difficult news from doctors everyday; and even if it meant her baby would be different than she imagined.  

That's how I feel. For every sleepless night we have, I'm thankful I get to soothe her back to sleep. For every doctor appointment, therapy visit, brace fitting, prescription pick-up, or insurance battle we go through day in and day out, I am thankful I have Tennyson here. I would rather go through hard days with her than have any day without her.

I'll admit our journey has been different than we imagined. However, I bet you too would travel this road, if it were your child. If it came down to your child not being here with you on earth or having a different journey than you expected - I'm betting you would choose different over death.

I remember while I was pregnant I always said, "as long as the baby is healthy...". I've realized that health is in God's hands and my baby's happiness is in my hands.

I don't care what other people think about my child. I don't care if others thank God they don't have our life. I thank God everyday for this life. I thank God everyday for saving Tennyson. I thank Him for allowing us to know this beautiful little girl here on earth, rather than having to wait to meet her in Heaven.

You and I are not so different. Should you ever find yourself on a similar path, separated only by hours from the path you thought you would be on, I promise you your perception of perfection will change in a {heartbeat}.  

e-mail me at tennsense@gmail.com

Amy

Sleepy Sunday

Tenny and I went to church this morning. Even though we didn't make it on time, we perservered through the rain and wind storm to say, "Good Morning, God!" (that's what I told Tenn this morning as I was rushing to get her dressed).

I was trying to figure out how I was going to carry her, the diaper bag, and an umbrella when the nicest thing happend - someone from the church saw that we were parked way out in nowhereland and came with an umbrella to walk us inside! I just love nice moments like that...when nothing feels easy and someone just does something nice for you. I love that!

Church was good and we went out to lunch with friends afterward. By the time we got home, Tenn was tired. Crabby, whiny, fighting her nap kind of tired. I brought her in the house and set her down and went back out to get the bag out of the car and I came back in to this:

In case you can't see how funny this is, here is a close up:

And, yes, I left her there. There was no way I was going to mess with that kind of tired. She woke up happy :) My little angel.

tennsense@gmail.com

Amy

She's Growing Up

It's no secret that being social is not one of Tennyson's strongest qualities. It's difficult to fit play dates into her already packed schedule. Most of her closest friends are the therapists she sees every week. She gets excited when she hears them knock on the door, and I always try to take her with me when I answer it so she can see who has come to see her. It's really sweet.

She has been through a lot of not-so-fun stuff in her 2 years. So I don't blame her for having some anxiety when it comes to new people and strangers. But the time has come to help her learn she can be safe and have fun with people other than Mom and Dad.

Last week we began respite care! Respite care is more for me I guess, but she benefits as well by making a new friend who just wants to hang out and play with her. The Exceptional Family Member Program (EFMP) through the Army provides the service...but let me tell you, it's a miracle we persevered through the paperwork and hoop jumping. I started the paperwork last September! That's right - SEPTEMBER. There were forms for me to fill out and forms for her doctors to fill out, records that needed to be requested, and when we finally had the paperwork complete, there was a home visit. After the home visit, a recommendation was made and then her file went before a panel who had to approve it. Then we were put on a waiting list for a month! Last week we finally started with our respite care nurse. I was nervous Tenny would cry and be scared of a new person, but she couldn't be happier with her new friend. And that makes this mama SUPER HAPPY :) I was sure it was going to take a few weeks for Tenn to warm up to someone new, but she was blowing her kisses the minute she walked in the door. She always surprises me.

We get 8 hours a week of respite care, so I've split that up over 2 days. My laundry is done (and put away!). My dishes are clean (and put away!). I can take a shower longer than 5 minutes. I can sew without interruption. It's like a dream come true! Seriously, it's crazy how much I can get done in those 8 hours!

We also got a phone call last week letting us know a spot had opened up for Tenn to go to pre-school 2 days a week. This pre-school has half typically developing kids and half special needs kids in each classroom. We accepted the invitation and are going through the process to get everything set up for her to attend. So far, it looks like her respite care nurse will go with her to school so she can have an aide with her while she's there. I hope she does well and enjoys being around kids her age. Even thinking about her being in school makes me emotional. I have been with her every single day of her life! I can't believe that she is getting big enough to go to pre-school. It just blows my mind. But knowing she will have someone there that can be her voice and make good decisions on her behalf makes me feel better.

So she will go to school. School is something I want for her. But what I also know is that she will most likely at one time or another be made fun of. For not walking, for not talking, maybe for having a small head, for wearing glasses, or for wearing braces on her legs, for having to sit in a different chair that supports her body. That part terrifies me. Maybe I shouldn't worry about 2 year olds being cruel...maybe I have a few more years before I really have to worry about that....

I guess I always imagined her older and bigger before she started pre-school. This afternoon I watched a friends 4 month old (adorable!!!) little boy and I realized that my baby is not a baby anymore. She's growing up!

I feel like we are making a good decision for her. I think it will be great for her to just get to be a kid!

Tenn and her future BFF Evie :)

email me at tennsense@gmail.com

Amy

Feeding Tube Awareness Website

If you are interested in learning more about feeding tube awareness, I recommend you check out the feeding tube awareness website:

They have a wealth of information on a variety of topics. There are inspirational stories and videos of "tubie" families. It might be helpful if you are a parent of a "tubie" looking for resources. I wish I had found it before Tennyson's g-tube was placed. I actually was referred to the website while talking to another Mom of a tubie while Tennyson was in surgery for her tube.

tennsense@gmail.com

Amy

A New Tube For Tenn

Tennyson had three appointments up at UNC in Chapel Hill today. Three appointments mean that a) my child cried during all three of those appointments and b) we are both wiped out. It’s an hour and forty five minute drive each way and she had feeding and speech therapy before we left the house this morning. My girl is a trooper.

One of her appointments was to have them check out her g-tube. Tennyson has gained some weight since the g-tube was placed and she has been battling the dreaded granulation tissue I swore my child would never get. Granulation is when the skin is trying to close up the hole (aka: stoma) in her stomach…it’s literally like her body is growing new skin and it looks terrible. It makes the hole look red and irritated. That’s not how we roll in this house. We keep things clean – really clean.

I didn’t know that friction between the tube and her skin can promote granulation tissue growth. I learned that today when they took a look at her tube and said she needed a bigger size. She needed more space here:

Hopefully, having a larger tube with less friction will be more comfortable for her and make the granulation tissue disappear.

Also, Tennyson is making some exciting progress! Yesterday she had her most vocal day ever and said, "mama" all day long! She has said it before, but yesterday she was saying it TO ME. When I would tell her say mama she would yell, "MA! MA!" It was so cool!

She has been giggling at things she sees on T.V., she seems more awake and alert, she is holding her head up better, she is babbling more each day, and her muscle tone is better (less spastic - more relaxed). She is doing really well. I'll get another video up soon so you can see it.

We are going to double her dose of folinic acid and add a pure form of vitamin B6 to help it absorb better! Exciting times around here!

tennsense@gmail.com

Amy