Leah visit

Written by TJ and Jaime | 27 July 2010

Our SMA friends Leah [SMA type-2] and Mom [Kate] were visiting family in Tennessee and stopped by to see us. I hung out quite a bit with them at the SMA Conference, but that's not where the relationship started. We first heard about them during our trip to Opry Mills in Nashville TN a long time ago. This was before we received her diagnosis and we were still puzzled regarding Nora's condition. Jaime's friend Tammy told us about her sister-in-law [Kate] who's child has this horrible disease called Spinal Muscular Atrophy. The symptoms were similar to Nora's and I remember thinking how terrible it sounded. We got back to the hotel room and looked up everything on SMA that night - but dismissed it all because it was genetic and nobody in our family had anything - so we thought there was no way Nora could have SMA. It's sad looking back now and to that story about Leah and thinking how horrible life was going to be for this little girl. Fast-forward to the present and ohhh what we would give to have Nora be just like Leah. What a cruel twist of fate that experience turned out to be.

Anyway, Leah and Nora hung out together and colored. Well Leah colored and Nora just fixated on Leah. Who wouldn't though? Leah is a precocious 4 and a half year old. She knows all about SMA too. I tried to explain that Nora was weaker and Leah corrected me saying "Nora has Type-1 SMA, I am a Type-2" Then I said "do you still eat with your mou--?" and Leah interrupted saying "no, I don't have a feeding button but if I don't keep using my pacifier to make me strong, they say I may have to someday". Leah is simply amazing. She has weakness in her hands and when she colored she just passed the markers to me to take the caps off for her. She knows her capabilities and isn't the least bit shy about asking for help. Like when she was eating Mac-n-cheese with an adult spoon and after 3 or 4 bites said "do you have a smaller spoon? I'm having a hard time with this one".

But to see Leah in her powerchair is to see the real Leah. She is so nimble with the controls especially since she only travels at Mach II speed. She is like a typical 4 year old. 30 seconds after putting her in the chair "where's Leah?" she just takes off and explores. When we went for a walk she sometimes stayed with us, but most of the time she was about 100 yards ahead of us - just being totally independent. Jaime and I love little Leah.

I also uploaded another video of Leah's visit on YouTube. See her in action

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New Video - Stander okay

Written by TJ and Jaime | 26 July 2010

I made another new video. This one is of Nora in her stander. She likes to be pushed around well... Nora tends to like anything that is semi-dangerous. After talking to other SMA parents, this is something most of the kids share (dangerous fun...not enjoying the stander).

Enjoy the video. Nora also shows off her "Okay" word at the end of the video. If we end any sentence with "Ok?", she will say "oh-ke". We have lots of fun with this.

YouTube Video of the stander

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Nora turns 18 months old

Written by TJ and Jaime | 25 July 2010

On July 23rd Nora turned 18 months old. This is a huge milestone for us because we really didn't think it could happen. Nora's steep decline early in her life and the almost monthly sicknesses made 18 months seem like an impossible achievement. We are so proud to be parents and absolutely love each day we get to spend with Nora. Specifically related to the last post, we only get angry and depressed when we think about that day when we cannot care for Nora any longer. Sometimes it gets hard to face the truth that no matter how hard we love and care for Nora, it won't change the diagnosis.

For now we have a 18 month old girl who weighs 18 lbs 10 ounces and is 32 inches long. She has mini tantrums when to take something from her, intentionally throwing things on the floor, actually practices jabbing glowsticks up her nose and in her eyes, and smiles when she farts.... even in her sleep. So in other words, she's like any other 18 month old.

YouTube video of Nora's first taste of cake

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bad week venting

Written by TJ and Jaime | 23 July 2010

Sometimes a week come along and everyday seems to be worse then the last. The depression grabs a hold and you just have to ride it out. Well...in my case I also write it out.

So Nora hurt her knee....well technically we hurt her knee. She hurt her right knee a month back and we just immobilized it and in a week, it was good as new. It's her left leg now that hurts. She in quite a lot of pain if it's moved the wrong way. There is a slight amount of swelling but nothing to indicate a serious fracture. True there might be some small fracture which I learned from the SMA conference is very common in children with low bone density. Regardless if it's a small crack in the bone or if it's just a pulled muscle, the treatment is the same. Keep it immobilized, control the pain, and wait for the body to heal itself. As she gets bigger moving her is becoming more difficult. Her floppy arm and legs are harder to control since they just dangle. If you lay her down wrong or too quickly one of her arms can easily break.

So there's that, and both Jaime and I are ultra low on sleep. We were excited about pictures which that got rained out, the new portable Pulse Ox was supposed to arrive on Wednesday and didn't. All of this in the same week, is enough to put a small crack in the dam that holds back the flood of sorrow and anger.

So I'm watching a movie with Nora tonight doing Chest PT and it has a scene where a mother was getting her daughter ready for her suiters. ....it was Disney's Mulan. It is just crushing to think Nora will never have any of that. If by some impossible miracle she lives into her twenties, she will never leave home or find love. It gets really hard to look at your daughter and know that you will never see her walk down the isle... or even have a wedding. I will never know what she would have looked like as Nora the woman....or even the awkward teenager. These thoughts seem to creep back in again during difficult weeks which only adds to the funk. Being the parent of a terminal child, forces you to keep focused on only today...on right now. It hurts too much to look beyond that. That's what I think I wished people understood. They look at their children and see a future of almost endless possibilities - and some even take that fantastic gift for granted. Can anyone really truly empathize with how much effort it takes every second to try and NOT think about the LIFE SMA steals each day from Nora. I'm so angry with SMA. I can wait for my mind to patch that little crack that is letting these thought seep in.

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New YouTube Video

Written by TJ and Jaime | 21 July 2010

I uploaded a new video tonight of Nora working on her "The Count" sound. She's almost got it but as usual she gets shy around the camera. Jaime reads to Nora every night in this position. She loves books and even has preferences on which ones to read (Nora, not Jaime).

YouTube Video "The Count"

Tomorrow we will be doing another round of professional pictures for Nora's upcoming 18 month milestone. Our good friend Jennie (http://www.jennieandrewsphoto.com/) will be the photographer since she is fantastic. I can't wait to see what she has planned for this photoshoot since it will be at the UT botanical gardens.

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