She not only could play the bell each time the song called for it, but knew when to play it one time or two times. Then came a different challenge- I changed which bell she had. But still, my little star continued to amaze me. In just a couple short weeks, she was able to learn how to play each of the colors while I played the others. It made my holiday season all the more merry, so I had to share!
Saturday, December 27, 2014
Happy Holidays!
Emma and I have been playing with her pat bells quite a bit this month as I've taken advantage of them to play things like "Jingle Bells" with her during the holiday season. One of the other songs we play is "Twinkle Twinkle Little Star" as she knows it well and the melody is easy to copy on the bells. I started by playing them in front of her so she could watch and listen. I decided it was time to get her involved more and gave her one of the bells from the song (the red one). I was planning on having her play that bell each time the song called for it and play the others for her still so she could see and hear it. This quickly turned in to a talent show staring Emma.
She not only could play the bell each time the song called for it, but knew when to play it one time or two times. Then came a different challenge- I changed which bell she had. But still, my little star continued to amaze me. In just a couple short weeks, she was able to learn how to play each of the colors while I played the others. It made my holiday season all the more merry, so I had to share!
She not only could play the bell each time the song called for it, but knew when to play it one time or two times. Then came a different challenge- I changed which bell she had. But still, my little star continued to amaze me. In just a couple short weeks, she was able to learn how to play each of the colors while I played the others. It made my holiday season all the more merry, so I had to share!
Sunday, November 23, 2014
CT Scans and X-Rays and Shunt Taps, Oh My!
Emma and I have had a busy couple weeks. On November 12th, she got a viral infection. She was extremely congested and coughed for nearly a week. She stayed home from school Thursday, Friday, and the following Monday, but her pediatrician cleared her to return to school Tuesday and she had been asking to go. After two days back at school, she began vomiting after I put her in bed for the night on Wednesday. After the first time, we got her bathed and all cleaned up. Then came a second wave around 9:30 PM, followed by a call to her pediatric neurosurgeon. Given her last week of fighting off the viral infection, he said to watch her and see if any other symptoms developed. She had no fever and her open soft spot on the back of her skull was not full of fluid. But for some reason, I was still very uncomfortable. I didn't get the sense that her shunt was failing, but since she has been lucky so far and not had a malfunction, we don't know what cocktail of symptoms she will have. When the third wave came and she struggled to purge her already empty stomach, we packed her bag and headed to the Emergency Room (ER) at Children's Hospital.
On the ride there, she had a fourth wave. We finally arrived at the hospital and found the ER entrance. We lucked out as the first parking spot in the parking garage on the ground floor was empty. Once parked, I stripped her down out of the clothes she had on that got messy in the ride there and rushed her inside. Thankfully, I had called ahead and they had put her on a priority list. When we checked in, we were directed to another waiting area. While in that room, she vomited another four times while we waited to see a doctor. It felt like an eternity to me, so I can't imagine what it felt like for her.
When we made it to a room, Emma had to endure test after test after test. They took blood and fitted her with an IV so they could give her medication to stop her nausea. Then came the urine test, but sadly the sample had to be taken using a catheter. Once those were done, next were the orders for the big tests: CT scan, shunt series (7 x-rays), and a shunt tap.
It was a long night for both of us, but I was so proud of her for doing so well despite everything she was going through. I took about an hour nap and worked from home that day so that I could be near and keep an eye on her. I knew it would be a rough day for her getting back to her normal schedule as best she could after being up all night getting tests done at the ER, but she's a fighter. She vomited one more time around 4:30 that afternoon, so I stayed up all night Thursday to make sure everything was alright. Work Friday was a blur, but thankfully she did well all day. We had a follow up appointment with her pediatrician around lunchtime where we were given directions on how to slowly reintroduce her normal diet into her routine after going through everything. She confirmed there was a nasty viral infection going around in our area that was causing the same symptoms Emma had presented with Wednesday night. Emma's system was just already weakened by the other viral infection she had been fighting for a week that this one hit her pretty hard.
When we made it to a room, Emma had to endure test after test after test. They took blood and fitted her with an IV so they could give her medication to stop her nausea. Then came the urine test, but sadly the sample had to be taken using a catheter. Once those were done, next were the orders for the big tests: CT scan, shunt series (7 x-rays), and a shunt tap.
The CT scan and x-rays didn't worry me other than the amount of radiation she would be exposed to. One shunt series is roughly equivalent to one year of natural radiation. I asked that the CT scan be done using a gantry angle in hopes of avoiding any exposure of her eyes and thyroid to more radiation, but was told their machines couldn't do them at an angle. After reviewing everything, the pediatric neurosurgeon said everything looked normal. The shunt tap was next and that procedure did make me nervous. It was her first time to have one and I knew it could be painful. The pediatric neurosurgeon was very kind and great at explaining everything she was doing. They put a numbing cream on Emma's scalp where her shunt was to try to minimize her discomfort. Then came the time to be brave. I held her head still so she wouldn't move when the pediatric neurosurgeon performed the shunt tap. A nurse held down her arms and legs. She was so strong and brave- I was so proud I was tearing up. The pressure was between 4.5-5 and the cerebrospinal fluid (CSF) was crystal clear just as it should be. Visually, there seemed to be no issues with her shunt. To be sure, they took a sample of CSF to be sent off to be tested.
At that point, we were told, as long as she could drink something and keep it down, we could go home. Here came a completely different set of challenges. Emma is picky when it comes to the liquids she will willingly consume. She loves milk and will also drink watered down juice- but not straight water or juice. She is also picky as to which delivery systems she will happily utilize. This posed a challenge given the cafeteria was closed and the nurse had limited resources. She found some apple juice and used pedialyte to water it down. But the bottle was not the one Emma was used to so she resisted. After the night she had just endured, I can't blame her. Thankfully, after struggling with the juice for around 20 minutes and barely having an ounce, the nurse found milk on the seventh floor. Hallelujah! Once she had three ounces of milk down, the nurse said we could go. We packed up her dirty clothes, got the discharge paperwork, and headed home. We got home just in time for her epilepsy medication. I offered her some milk and she crashed in my lap.
It was a long night for both of us, but I was so proud of her for doing so well despite everything she was going through. I took about an hour nap and worked from home that day so that I could be near and keep an eye on her. I knew it would be a rough day for her getting back to her normal schedule as best she could after being up all night getting tests done at the ER, but she's a fighter. She vomited one more time around 4:30 that afternoon, so I stayed up all night Thursday to make sure everything was alright. Work Friday was a blur, but thankfully she did well all day. We had a follow up appointment with her pediatrician around lunchtime where we were given directions on how to slowly reintroduce her normal diet into her routine after going through everything. She confirmed there was a nasty viral infection going around in our area that was causing the same symptoms Emma had presented with Wednesday night. Emma's system was just already weakened by the other viral infection she had been fighting for a week that this one hit her pretty hard.
I'm extremely grateful that this wasn't her first shunt malfunction, but I know her luck will likely not last forever. We will have several nights like that night where she will show just how strong she is as she gracefully looks hydrocephalus in the eye and says, "I got this, Mommy!"
Monday, October 13, 2014
Yipes! Look at all the STRIPES!
If you are a fan of Mike Rowe and the show Dirty Jobs, he did an episode on the people that run a place called Sharkarosa Wildlife Ranch located in Pilot Point. Here is a snippet of what it was like being a Nanny to some Joeys.
This educational facility focuses on creating engaging experiences for the entire family with endangered wildlife. From the Safari Tram Ride to the animal presentations, you not only get close enough to smell them, you can touch many of them too! For a child like Emma that started off being so tactilely defensive, this place was a good place for her because it fosters an every growing curiosity. And with her newly found and ever growing confidence, she is trying to become more engaged with new environments every day. I was so excited to see what she would think of all the animals that she enjoys seeing on flash cards and in books.
We arrived shortly after they opened, and made a quick stop at the pavilion where the animal presentations take place before we went straight to the Joey pen you see on the video above. We watched two very adorable youngsters hop around and nibble grass while they explored their enclosure. Then we looked at the pen where all the adults were.
Next, it was time for the Safari Tram Ride - certainly the highlight of our visit for Emma. This thirty-five minute ride takes you through pastures where camels, horses, pigs, zebras, emus, endangered deer, zedonks, and zorses come up to the Tram to enjoy feed in the buckets on the sides so you can see them up close. They tell you which animals you are free to touch and which ones to admire with your eyes instead. Emma was happy to touch any animal that she was allowed to admire with her hands that let her. She even made some friends with some of them.
In case you need some translation, Emma was saying "bye" and "see you later, zebra" to her new friend. She was very set on that one particular zebra. I'm sure she would have loved to take it home, but we let it stay with it's friends. (Mommy did end up getting her a little zebra of her very own though. She named it Stripes and loves giving it hugs.)
After the Safari Tram, we stayed for some of the animal presentations, had our picture taken with a sweet young Joey, and enjoyed some sno cones. At that point, it was time to head home for lunch and nap time. It was a wonderful morning and one that I'm sure she will remember. I know I will.
This educational facility focuses on creating engaging experiences for the entire family with endangered wildlife. From the Safari Tram Ride to the animal presentations, you not only get close enough to smell them, you can touch many of them too! For a child like Emma that started off being so tactilely defensive, this place was a good place for her because it fosters an every growing curiosity. And with her newly found and ever growing confidence, she is trying to become more engaged with new environments every day. I was so excited to see what she would think of all the animals that she enjoys seeing on flash cards and in books.
We arrived shortly after they opened, and made a quick stop at the pavilion where the animal presentations take place before we went straight to the Joey pen you see on the video above. We watched two very adorable youngsters hop around and nibble grass while they explored their enclosure. Then we looked at the pen where all the adults were.
Next, it was time for the Safari Tram Ride - certainly the highlight of our visit for Emma. This thirty-five minute ride takes you through pastures where camels, horses, pigs, zebras, emus, endangered deer, zedonks, and zorses come up to the Tram to enjoy feed in the buckets on the sides so you can see them up close. They tell you which animals you are free to touch and which ones to admire with your eyes instead. Emma was happy to touch any animal that she was allowed to admire with her hands that let her. She even made some friends with some of them.
In case you need some translation, Emma was saying "bye" and "see you later, zebra" to her new friend. She was very set on that one particular zebra. I'm sure she would have loved to take it home, but we let it stay with it's friends. (Mommy did end up getting her a little zebra of her very own though. She named it Stripes and loves giving it hugs.)
After the Safari Tram, we stayed for some of the animal presentations, had our picture taken with a sweet young Joey, and enjoyed some sno cones. At that point, it was time to head home for lunch and nap time. It was a wonderful morning and one that I'm sure she will remember. I know I will.
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