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

A Typical Day of Feeding

Tennyson doesn't like to eat. That probably sounds really strange to you. It's one of those things I never ever ever thought I'd have to worry about. I never heard of a baby that hated to eat - picky eaters yes - but babies who would rather starve than eat, never. From the time she was born, she struggled with sucking. She was 3 or 4 days old when she finally developed the skill to suck. Doctors were immediately concerned when she didn't have this natural skill that all healthy babies have. Soon enough she learned to drink from a bottle and eventually even suck on a pacifier.

So what does a 2 year old eat if they don't eat food? Believe it or not, Tennyson is not the only child in the world who doesn't like food (even though that is what I felt like for the first 2 years of her life). There is a fairly wide variety of formulas that offer complete nutrition for babies and kids like Tennyson.

Tennyson "eats" a formula called Elecare. Elecare works for Tennyson. It's completely broken down so all her body has to do is absorb the nutrients. On top of everything else Tennyson has slow motility. Motility concerns how fast food is digested. So the less her body has to work to break food down, the faster it digests, she is less likely to throw it up, and we can get the calories into her that we need to.

So this is what our daily set-up looks like:

I will explain all of Tenn's meds in a later post

If I'm really organized I'll prepare all of this the night before, so I can just wake up and have the entire day's worth of milk, water, and meds in nice little grab-and-go bags like this:

Each bag contains milk, water, her medicine for that time of day, and 2 large syringes of water for before and after her feed:

When it's time for Tennyson to eat, we use a feeding pump that looks like this:

It sits on an I.V. pole and the feeding bag cord runs through the top of the pump:

And this little cutie pie is sitting here "eating" her breakfast (she has a bib on because I offered her a bottle - which she declined):

pardon the messy morning hair

She is fed like this 3 times a day. She is also fed all night long while she sleeps to make sure she gets all of her calories she needs. It is really time consuming to prepare her feeds. I wash everything every night and from start to finish it takes me about 45 minutes to get everything ready for the following day. She takes an hour to eat with her feeding pump, and then she has to sit there for about an hour afterward or else it all comes up. Positioning is really important with Tennyson since she still has pretty severe reflux.

I am hopeful that one day Tennyson will not need to use her feeding tube. But until then, it's what keeps her alive, so I am very thankful for it.

e-mail me at tennsense@gmail.com

Amy

What Is A Feeding Tube?

As promised, I am going to be posting everyday this week in honor of Feeding Tube Awareness. I hope to demystify what a feeding tube is and help educate people who are curious to know what it looks like and how it works.

There are many different kinds of feeding tubes. They come in different shapes and sizes. I will only be telling about Tennyson's tube specifically, since that has been my only experience with feeding tubes.

Feeding tubes are intimidating. They sound far more serious than they really are. All they really are is an alternative way of getting food into the body. Tennyson's gastrostomy tube (g-tube) is called a MIC-KEY button (pronounced "Mickey" like Mickey Mouse). It is located on her tummy and leads directly into her stomach.

She takes all formula, water, and medicine through her tube. She can still drink bottles by mouth but she only does so once a day, if she's up to it. I don't push her if she resists it because we are trying to make every experience with feeding and food a positive one.

Tennyson has had her g-tube for about 3 1/2 months. She doesn't have any noticeable scars from the procedure because it was done laparoscopic, meaning the surgeons made a tiny incision in her belly button and used a camera to see where to place the tube. They filled her abdomen with air and then made an incision in her stomach. The stomach lining and skin are all that separates the balloon of water and the top of the g-tube. Tenn was in the hospital for three days following the procedure.

So here is what a MIC-KEY button looks like:

 



And here is it again from the top with the port door open:

To keep it secured, a syringe with water inflates a balloon, which restricts it from coming out of the stomach:

After the balloon is inflated with water, it looks like this (we check the amount monthly):

The inflated balloon simply surrounds the tube. The tube you see in the center of the balloon is how food, water and medicine get into the stomach. Pretty straight forward, right?

Next, a long skinny tube called an extension is attached to the top of the MIC-KEY button in order to get food, water, and medicine in:

One end of the extension tube attaches to the MIC-KEY button, and on the other end there are two ports - one small and one large. The small one is for small syringes (usually for medicine):

And the large port is for large syringes and feeding bag attachment:



So that just about sums up the MIC-KEY button. Not as complicated as it looks right? It's not gross. It doesn't hurt her. Think of it like a pierced ear - only in her tummy. The button stays in at all times. If it were to come out, we would need get it back in as quickly as possible. The hole can close up in as little as two hours. 

It does sometimes freak me out that it is a direct link straight into her stomach, so I sanitize all her syringes and extension tubes. I use these handy little microwave bags and just add water to them:

Up next tomorrow: A typical day of feeding.

e-mail me at tennsense@gmail.com

Amy

Unexpected Smiles

My last few blog posts have been all words and no pictures...kind of boring since I'm sure you stop by to see Tennyson's sweet face, right?!

I was in the car with Tenn this morning driving to two different pharmacies to pick up two different medicines and I looked back and saw my sweet little girl smiling back at me. It reminded me of a couple cute/funny videos we have of her. She has definitely taught us to expect the unexpected. You'll see why...

Disclaimer: If you don't think random baby spit-up is funny, you might want to skip this one.

You can kind of see that her legs are a little tight (spastic) in this video. We were going through the motions for rolling at the time.

We try to sit down for dinner each night together. Even though she doesn't eat food, we put out something she can taste or drink if she's open to it.

I hope those videos made you smile. They always make me laugh.

Feeding Tube Awareness week is February 5-11, so I'm committing to blogging everyday during that week about feeding issues, feeding tubes, feeding therapy...etc. Check back if you are curious about those things...we are specialists in that area :)

Amy

tennsense@gmail.com