Some Struggle Is Good

"When it comes to parenting, more isn't always better. When you give too much to your children you're not allowing them to feel the satisfaction that comes from making life better for themselves. Some struggle is good. Encouraging our kids to earn their privilege through hard work is one of the greatest gifts we can give them" - Dawn Raffel, Reader's Digest

I tore this quote out of a Reader's Digest the other day while I waited for an oil change. When I read this, I wondered if I am preventing Tennyson from reaching her full potential. It spoke to me because it's something I have been struggling with as a mom lately.

I want Tennyson to be able to do more than blow kisses and kick her feet on command.

I do everything for Tennyson. I carry her everywhere. I change her clothes. I change her diapers. I place toys in her hands. I manipulate her tiny fingers around them and shake them in hopes that one day she will see she can do it without my help. I try to explain what I'm doing while I help her so she learns ("let's put your socks on...where do your socks go?...they go on your feet...where are your feet?....there they are!"). I'm sure if she could talk she would tell me to be quiet.

How do I help Tennyson feel proud of herself? How do I empower her? What skill can I teach her that she can do without me? She does not sit, walk, stand, or talk yet, but she's smart - and I'm not just saying that because I'm her mom. 

I realize in the neuro-typical world, people judge a person's intelligence by their physical and verbal capabilities. Before Tennyson, I did too. I didn't know any better.

What I also realize now, is this world moves much too fast for Tennyson to keep up. She tries to do what you ask of her. She wants to interact with you. All too often, though,  people move on to the next action just as she starts to process the first. A beautiful mind, in a body that simply won't cooperate. Oh, what I would give to know what she is thinking.

Her lack of skills is not for a lack of trying by any means. She's been in therapy since 3 months of age. She still receives 8 therapies a week. She works harder than any child I have ever known. She is beginning to show her own frustration through emotional meltdowns, which gives me a whole new set of worries.  

Special needs parents know what I mean when I mention the importance of taking advantage of a child's young age. That's when the brain is making connections and learning basic skills they will use for the rest of their education. In the beginning, we were told, the hope for Tenn to catch up with her peers was by the age of two. Two and a half years have passed, however, and I still feel like I need more time with her while she's little.

So what do you do to empower your children? I would love to hear some ideas and suggestions from both parents of special needs and typical children. Please share. Maybe I can adopt some suggestions to help Tenn.

Amy - tennsense@gmail.com

Another Hospital Stay

I have so much to write about and it seems I just can't decide where to start. I guess I'll start with an update on Tennyson's hospital stay this week.

Tennyson had an appointment Monday morning with her Developmental Pediatrician. She is one of my favorite doctors that sees Tenn. She helps with our adaptive equipment referrals as well as referrals to new doctors we want to visit. She gave us a referral to Duke Children's Hospital to see a Hematologist (blood) doctor. Duke is currently conducting a clinical trial where stem cells from cord blood are reinfused in hopes of healing damaged parts of the brain. Stem cells are cells that don't have "assigned" jobs yet, so they can transform into any cell the body needs. Patients in the study are showing positive results.

During the appointment, she took Tennyson's temperature and it was 102.3! That's a high temperature for Tennyson. She had been fighting a nagging cold for over a week. When she saw her temp, she said she wanted blood work and a chest x-ray. We headed down to pediatrics to get tylenol and motrin to bring the fever down quickly.

The blood work showed alarming levels of white blood cells (the cells that fight infection). A normal number is around 10,000. Tennyson's level was 33,000! To top that, the chest x-ray showed a fractured rib. I was shocked - to say the least!

She was admitted immediatley and started on an I.V. antibiotic called Rocephin. Her body responded well to the antibiotic and the next day bloodwork showed her white blood cell count had dropped to 28,000; still very high. We stayed overnight once more while she continued to receive the antibiotic every 12 hours.

We could not understand how she could have a fractured rib. We are incredibly cautious of who has time with Tennyson. Our minds immediately tried to figure out how this happend. It was awful to hear the word "abuse" thrown out there as a possibility. We said we wanted to see the x-ray. Once we were shown what was supposedly a week old healing fracture, my husband and I could not see what they were seeing. They said they wanted to do a skeletal survey to see if there were any other fractures, which we cautiously agreed to. We hate exposing Tenn to any unnecessary x-rays, knowing she will have to have regular x-rays for the rest of her life to monitor her joints and hips.

When Tennyson and I arrived at the radiology department for the skeletal survey, I asked how many x-rays she would be getting. The technician said about 21. I said, "absolutely not". I told him I wanted to talk to her doctor or the radiologist. I battled the emotional side of me that said, "go ahead and show these people that Tenny is not abused". Then the logical, protective Mom side of me said, "Tennyson should not be subjected to 21 x-rays. Tenny does not need these x-rays". I'm so glad I listened to my gut feeling.

After just 2 x-rays (not 21!), the radiologist concluded her rib was NOT fractured. She has a blood vessel that runs in front of her rib. So what they thought was a fracture, was a blood vessel - BIG difference!

After the x-ray craziness she had another blood draw. Her white blood cell count was down to 19,000. Low enough to be discharged and sent home on antibiotics. Thank God!

We have a follow-up appointment tomorrow with her regular pediatrician. Her hands and arms look like they used her as a pin cushion, but other than that she is doing great!

tennsense@gmail.com

Amy

Seven Snippets Sunday (on Tuesday)

Okay - I know, I'm a few days late on my "Sunday" blog post. We are back on the west coast visiting family and preparing for the upcoming family wedding. It took Tennyson a few days to warm up to family, but the last few days were so fun. She's blowing kisses and smiling and babbling. It's really nice our family is able to see she doesn't actually cry all day long. Let's catch up, shall we?

--- 1 ---

Flying with a 2 year old is no joke. Now that Tennyson is 2 years old, we had to buy her a seat for our trip home. It's really annoying though, because Tennyson can't sit independently in an airline seat (yet). Eventually she sits on our laps. We brought her (humongous) carseat on the plane and of course Tennyson ended up sitting on our laps. There was virtually no room for her to extend her tiny legs and it didn't help it was a five and a half hour flight...not fun.

--- 2 ---

We've been pinned on Pinterest! Really, Tennyson has been "pinned". On the Blogger dashboard, I can see which sites bring in traffic to the blog. I noticed one said pinterest. I clicked on it and there was Tenny's adorable face on Pinterest. I appreciate everyone who follows this blog (either publicly or silently). I write because I know people out there are reading and I am so thankful for each of your kind comments and e-mails.

--- 3 ---

Tennyson looked adorable on Easter. Her Aunt Sarah picked out her outfit. The dress, however, was doomed from the start. Within 5 minutes of putting the dress on her, she pooped on it. Yuck. Spot washed and dried, we put it back on her since we hadn't even made it out the door. A few hours later the same scenario happend (only 10 times worse and not spot washable). She was cute while it lasted. The Easter Bunny remembered us and she was completely spoiled. I love being with family for holidays!

--- 4 ---

I love my Mom's camera. Everytime I'm in town she lets me borrow it so I can take cute pictures of Tenny. I'm excited I have new pictures of her to share with you!

--- 5 ---

Tenny has been a little slow to warm up to family. She spent most of Easter pouting and on the lookout for anyone trying to touch her. This is the look she gave everyone for most of the day:

--- 6 ---

Cutest baby ever:

--- 7 ---

I just want her to stay this little :)

For more Seven Snippets, visit Bringing the Sunshine!

Seven Snippets Sunday

I'm going to try something different today. I've been following the blog "Bringing the Sunshine" for well over a year. Andi (the blogger) has two amazing kids. Her oldest, Sarah Kate, has cerebral palsy. Her youngest, Nathan, has down syndrome. Once a week she does "Seven Snippets". It's a fun, brief way to cover a wide variety of topics. I've been trying to come up with a way to be a more consistent blogger. Hopefully this can become my new regular feature for Sundays.

--- 1 ---

We bought our first house! We are really excited. It's in a great area, close to Tennyson's future school. It's a one story home on a golf course. The home inspection is scheduled for Thursday, so as long as nothing major is found, we close on May 1st!

--- 2 ---

The new seizure medicine we started last Tuesday seems to be making a difference. Tennyson has had only one seizure since we began. I really pray this medicine is what we have been waiting for. We will be steadily doubling the dose each week for the next 3 weeks.

--- 3 ---

Tennyson will be switching pre-schools in the fall since we are moving. I had no idea that pre-school admission was so competetive, not to mention how early the admission process starts. I called in mid-March, which to my surprise, was the middle of admissions for next fall. Am I the only parent who seems to be behind on everything - all the time? Sheesh! There are six children applying (Tennyson being one of them), and only 2-3 openings. My husband and I went and had a school tour and met with therapists and teachers. It will really be an amazing school for Tennyson to attend. They follow a curriculum, so it's not a glorified daycare, which was one of my concerns. The only thing I'm a bit nervous about is the frequency she has to attend. Five days a week, from 8am to 3pm. It seems like a lot for a 3 year old to take in. I don't know what I'm going to do with myself.

--- 4 ---

Tennyson will be baptized on Saturday April, 14th! We bought her white dress and shoes yesterday. I'm so excited our families will be able to be there on such an important day for her. I hope to have many adorable pictures to share.

--- 5 ---

Tenny and her cousin Chloe are going to be flower girls in their Uncle Josh's wedding! The outfits the bride has chosen are so adorable! Tenny's Nana made purple tutus wrapped with kelly green ribbon and the girls will wear white long sleeved leotards, white tights, and white shoes. Trying to find a hair clips in the exact colors was challenging, so I made my own! I will be happy to share a tutorial post if anyone is interested.

--- 6 ---

My camera is out of commission at the moment. It's a new camera I just received for Christmas, so I'm a little bummed I didn't get to use it for very long before it started having issues. So, if you've been wondering why there haven't been any adorable pictures of the blog star, that's why. I've been using an older camera, and it's just not up to par.

--- 7 ---

We met with an estate planning attorney last week to discuss setting up a special needs trust for Tennyson. We have a second meeting next Thursday with a different attorney who specializes more in special needs trusts. It's something we have wanted to do for a long time to make sure Tennyson would be well taken care of, should anything happen to my husband or myself.

For more Seven Snippets, visit Bringing the Sunshine!

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