Gummy Bear          Twix         Aikman          Jackson

 


 

Gummy Bear

 

Below is Gummy Bear's Story. Parts to be added as they are remembered or as they occur.

 

GB Smiling

 

With us since April, 2010

 

Gummy Bear's Story

 

So, I have been wanting to write this up for some time and hadn't the time or energy to compose my thoughts on the matter. This starts off with what was supposed to be "The Happiest Day of My Life". No, not my wedding day, but the day my first child is born. Mine wasn't. In fact it was right there near the bottom as one of the worst days of my life.

 

It started out normal enough, Veronica and I had made an agreement to "not, not try" anymore (we basically weren't trying, but we weren't not trying either, if that makes any sense). A few months later I get woken up with the news that she was pregnant. In hindsight my response of "How did that happen?" probably wasn't the best, but Veronica seems to enjoy it now. We proceeded along and at the first ultrasound (about 9 weeks) the baby looks like a little Gummy Bear, hence the nickname that we still call her. Everything is looking good for the entire pregnancy. We make it to the due date and beyond with no complications. We also agreed through this that we weren’t going to find out the gender until it was born, hence the use of “it” a lot.

About 10 days passed the official due date we were scheduled to come in for a C-section, since it was clear the kid wasn’t coming out on its own. We went to the hospital and checked into their fancy child birthing room. We found out that due to the size of the baby we could either induce labor or have a C-section. The baby was big, but not too big. So we waited there for a little while, pretty excited and nervous, discussing our options. Eventually the techs or the nurses came in to do a quick ultrasound to find out if the baby was positioned correctly and there seemed to be some issue, but I wasn’t sure what it was. Soon another person came in to confirm their suspicions and, yes, there definitely was a problem. It turns out that a large portion of where the baby’s brain was supposed to be, there was nothing but fluid. She was missing about 50% of her brain. What this meant at the time, neither of us really knew but my wife with her medical background feared for the worst.

Because of the news, the induction/C-section was postponed until the morning. We decided to do a C-section, since that would be less of a trauma to the baby, and we sat up and discussed what was going to happen. Through all of this I was feeling lost and helpless. I didn’t fully understand what was going on and I had no idea what the ramifications of all of this would be. We didn’t know if, first off, the baby would live for much after birth. The amount of brain loss was severe. She could come out a vegetable. We just weren’t sure. Even if she did manage to come out ok we didn’t know what she would be able to do in the long run. Would she be able to walk? To talk? We figured at best she would progress up to the level of a 5 year old.  They eventually moved us from the birthing room to another room far less luxurious. After a while I finally fell asleep, although I don’t think my wife ever did.

 

The next day was the moment of truth. We went into the delivery room and I was sitting up next to my wife’s head behind the surgery curtain. They removed the baby who was immediately started screaming. At the time I had no idea if that was a good thing or not. I was told later that it was. They quickly showed us the baby, confirmed that it was a girl, and then ferreted her away to the NICU (neonatal ICU). As my wife was finishing surgery, I was brought back to the NICU so that I could see her. At first I was petrified I would break her but they allowed me to hold her. She was purple at the time, but again, I was told that was ok. I eventually left to rejoin my wife and the baby was brought in when they found her to be stable. She immediately started to feed without much of an issue and so things started to be on the upswing.

 

We were in the hospital several days after she was born because they wanted to make sure that everything was as good as it was going to be. She had an MRI almost immediately and we could see the extent of the damage that was done. The doctors estimated that she had a stroke a few weeks before she was born. We aren’t sure of the cause but it is likely tied to my wife’s genetic clotting issue. One of the concerns I had was that she would have hearing issues, since I was born with hearing issues that we have never determined what from. But luckily she can hear just fine. Her eyesight on the other hand is not perfect, and we aren’t entirely sure if it can be fixed with glasses, but generally she sees pretty well considering the amount of brain damage she has. After all of the tests, she was diagnosed with Cerebral Palsy with Left Hemiplegia, meaning she has a difficult time moving most of the left side of her body (leg, arm, hip, etc.).

 

After we had gone home we basically lived our lives. For the first year I was mostly tasked with tummy time because my wife couldn’t handle the fight that it caused and the cries. Gummy Bear mostly just laid there and didn’t want to move, over time though, she got the hang of it. Even after all of that work, she never really crawled until she was able to walk. And for the first year, every time we would put her on the changing table she would always look to the right. She would never voluntarily turn her head to the left. We knew fairly soon that she would need to see a few therapists. She started going to Occupational Therapy within her first couple of months, then we added Physical Therapy and Speech Therapy over time as it was needed.

When she was almost 4 years old, we decided to do a special surgery for her in order to relieve the tension in her leg. It was a Selective Dorsal Rhizotomy, where they go into the spinal cord and select specific nerves that are causing the muscle tension and cut them. The very thought of this surgery was very stressful at the time and I was extremely worried that she might be paralyzed. Fortunately, though the surgery turned out great. She was walking and moving way before they expected and we were out of the hospital in 2 weeks, a whole week earlier than the best case scenario. Videos are below.

 

Overall, she is a pretty amazing kid who continues to defy the odds. Initially I had stated to my wife that we will cheer all that she is able to do and not lament what she can’t do. But watching her grow up and be stubborn enough to figure out mostly everything she needs to, I’m not sure if there is anything she can’t do.

 

Progressive Timeline

 

With the diagnoses comes lots and lots of therapy (both physical and occupational) but as I told my wife when GB was born, I will be thankful for anything that she is able to do and not lament what she can't do (that hasn't always worked but it has been a good mantra going forward). So here is a timeline of videos describing her progress from when she was born (or sometime shortly after) and going forward (never looking back).

 

Born - April, 2010

 

 

April, 2011

GB dancing while working on her cruising.

 

 

It took us a while to be able to crawl due to the CP and not being able to use out left side that well but GB figured it out using a type of army crawl.

 

June, 2011

 

We were told by our PT that GB would probably not be able to climb up stairs by herself until September (of 2011). Here she is doing it for the first time in June, 2011.

 

August, 2011

 

After trying for a long time GB finally figured out how to sit up on her own. She then proceeded to flop up and down with her newfound tallent.

 

October, 2011

 

GB's first steps at 1 1/2. I had set up this little experiment to provoke her into walking on her own and it worked and I actually got it on video.

 

May 2012

After a few months on walking on her own we went to actively helping her by at PT by walking on the treadmill.

 

November 2012

Advancing from regular walking, we have now upgraded to riding a scooter.

 

February 2013

At times we wanted to get more focused attention on lefty. Therefore we cast righty and made her do some fine motor skills with lefty.

 

In order to improve her grip strength we did some swinging on a trapeze at PT.

 

October 2013

 

Almost a year later we did the lefty restraint again. You can see a world of difference in just that short amount of time.

 

 

January 2014

When she was almost 4 years old, we decided to do a special surgery for her in order to relieve the tension in her leg. It was a Selective Dorsal Rhizotomy, where they go into the spinal cord and select specific nerves that are causing the muscle tension and cut them. The very thought of this surgery was very stressful at the time and I was extremely worried that she might be paralyzed. Fortunately, though the surgery turned out great. She was walking and moving way before they expected and we were out of the hospital in 2 weeks, a whole week earlier than the best case scenario. Videos are below.

 

This is one of the first therapies after her SDR. This takes place 3 days after the surgery. Working on crawling first.

 

 This is the second video after her SDR, taking place 5 days after the surgery. It is a compilation of the videos taken showing some assisted walking and stairs.

 

 This is the third video after her SDR, taking place 6 days after the surgery. It is a compilation of the videos that were taken that day. The video shows some crawling, working with lefty, swinging, stairs, and biking. She also gets her cast off partway through the day.

 

 

 This is the fourth video after her SDR, taking place 7 days after the surgery. Working on walking up stairs some more.

 

 This is the last video after her SDR, taking place 9 days after the surgery. This is a compilation of the videos taken during the day. In the video she is wrking with lefty, stretching out and reaching on a large ball, and doing a lot of stairs. She ended up leaving later that night, about a week ahead of schedule.

 

May 2015

Been working on using lefty to help with cutting. This is one of the first times she has been able to cut paper by herself.