I Hate Epilepsy

Yesterday, during one of Tennyson's doctor appointments, she began having seizures. She continued to have seizures every minute or so for over an hour and a half. This was far more frequent than her normal daily seizure activity.

Ironically, we had an appointment with her neurologist in the afternoon. We have been growing more and more concerned that Tennyson's seizures have never been prevented with her medications. Her seizures began last August. For seven months, she has had one or more seizures a day. It's an incredibly helpless feeling to watch her have them.

Her seizures are classified as myoclonic and tonic seizures. They are in a class of seizures that are of the most difficult to prevent and control. Myoclonic seizures are what she had yesterday. It's a rhythmic pattern. Brief jerks that happen every minute or so. They scare her. She is very aware when she is having them. She looks at me as if she wants to say, "what's happening to me!?". She cries when  they are over. Sometimes she can have three or four in a row.

I hate epilepsy. I pray everyday for Tennyson to live a life without seizures. Each time she has one, I think to myself, "I hope that was the last seizure she ever has." If I could take one diagnosis away from Tennyson, it would be epilepsy.

Her doctor gave her a medicine called Ativan to make the new seizure episode stop. Essentially, it made her sleep. While she slept, our neurologists made an aggressive plan to try to prevent these seizures. We are starting a new prevention medication this evening called Rufinamide. We are going to give her this new medication for about two months to see whether or not it will work for Tennyson.

I kept her home from pre-school today. She had a rough day yesterday and I wanted her to be able to relax and rest. I was also worried she would have a repeat of yesterday and her new emergency treatment prescriptions were not ready to be picked up. Her respite care nurse came to the house and Tenn was able to stay in her jammies and watch her favorite show on TV.

I hate epilepsy. I hate it. I hate it. I hate it!

tennsense@gmail.com

Amy

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