What a Weekend...

While I am still trying to absorb all of what has happened in the last forty-eight hours, I'll do my best to summarize. Friday night, Emma was picked up by my ex at 6:00 PM for his weekend visitation. At some point during his drive back to his apartment, she started coughing and gagging as if she might vomit. He texted me asking if she had been acting any different that day, but I told him she hadn't. Then he called around 6:30 to tell me what was going on and I told him to call Acute Kids or take her to an ER. He got off the phone with me and called Acute Kids.

Just over an hour later, he called me back to tell me that Acute Kids told him to take her to the ER, so he was taking her to Baylor in Grapevine. He texted me again to tell me they were going to transfer Emma to Children's Hospital. I asked him if she was having a shunt malfunction and if they had told him what was wrong and he responded they didn't know, but it looked like she had a seizure. Since Emma never had a seizure before, I immediately felt like the floor below me disappeared and the room went dark. I quickly texted back asking if she was stable and he stated she was, and that they had given her anti-seizure medication. At that point, I turned around and went straight to Children's. I beat her there and had to wait. It felt like hours passed before I finally saw her being rolled into her room on the hospital bed knocked out and looking so weak. My heart dropped and it took all my strength not to cry, but I kept composed and just spoke to her and rubbed her hair out of her face until I could hold her.



The doctors at Children's had lots of questions about what had happened that led up to the ER and after. I looked at my ex and said she was with him so he'd have to answer their questions. I hated that I wasn't there for her and didn't know what had happened so I listened as intently as I could so I could understand what she had been through. This was the first time I heard the full story of what happened, and as the words came out of his mouth, I felt weak and strong simultaneously; weak because of feeling like I should have been there to comfort her, and strong because I knew she needed me to be strong for her.

He described how she had coughed and gagged in her car seat on the way to his apartment. He stopped on the side of the road to get her out and she was a limp noodle. He put her back in the car seat and went to his apartment. When he arrived, he placed her on his floor on her side in case she needed to vomit. Her left arm began to move rhythmically and then her left leg did as well. Her eyebrows started twitching, her face grew pale, and her lips turned blue. Then he took her to the ER. The Children's doctors then asked how long the rhythmic movement had been going on before they gave her the anti-seizure medication at the ER. He said he couldn't be sure, but he estimated it to be twenty to twenty-five minutes. He said they did a CT scan on her and took blood. I was shocked by his story as I hadn't heard any of it except what happened in the car ride to his apartment. I was frustrated he hadn't kept me well informed considering he had two hours from when he arrived at the ER to when she left to be transferred to Children's.

Around 11:30, the resident on Emma's case said the neurologist had reviewed CT scan from Baylor and said her ventricles in her brain actually looked smaller than they did compared to her MRI she had back in March, so he felt she was not having a shunt malfunction. This was a huge relief, but it also meant we weren't certain what caused the seizure in the first place. To try to figure out more about her seizure, the neurologist ordered an electroencephalogram (EEG) to analyze her brain waves. The resident did say that they usually don't perform those tests on the weekends unless it is an emergency, but maybe we'd get lucky.

My ex decided he was going to go down to the cafeteria for some food and offered to bring me back something just after midnight. After he brought back a sandwich, he told me he was going home for the night because the room was too small. I was disappointed in him again for not staying for her, but not surprised.

Fast forward through the night and the morning and we finally heard the magic words, "we are going to do her EEG now." Only one parent could go with her and my ex said I should go. So Emma and I left around 11:45 AM for her first adventure away from her room. We got to the test room and the technician got her ready by making marks all over her scalp where the little electrodes would be placed. Once she was ready, the test lasted forty-one minutes. She slept for the first part, but then the tech said she would need to be awake and interacting for the second half. She didn't really want to wake up, but thankfully she obliged. She slept through the clean up and the whole way back to her room.

We tried off an on to see if she was ready to drink some milk and finally she did around 3:00. She drank about five and a half ounces before the neurologist came in and wanted to check her over. So we had to stop her even though it was the first thing she'd had since she left my house around twenty-one hours prior. He stated he felt she had epilepsy and would be placed on a daily medication, but he didn't know which one and wouldn't until after he reviewed EEG which should be around 4:30. So it was time to hurry up and wait.

When 4:30 came and went, I began to get antsy. I knew my dogs would be needing to go out soon but didn't want to miss the doctor reviewing the results. Finally at 5:45, I spoke to the resident and asked if she had anyway of knowing where on the list Emma was for the neurologist. She assured me that since he was so busy (with over thirty patients), I had a couple hours at least before he would review the EEG results and talk to us about them. So I went home and grabbed stuff in case I'd be staying another night if she wasn't released.

At 6:15, my ex texted that neurologist called the nurse with the EEG results. He felt Emma was at more risk for future seizures than an average child and would need anti-seizure medication daily. I was back at the hospital by 7:00 and hopeful she'd be leaving soon. By 8:00, she was being discharged and it was time to review paperwork and learn about her new medications. About an hour later, I put her in the car seat of my ex's car and kissed her goodbye. It killed me that she wasn't going home with me, but I knew she'd be home with me again in just twenty-one more hours. Since I still couldn't sleep, those twenty-one hours felt almost as long as the last twenty-four at Children's.

But, I'm happy to say she's home now. She finally ate for the first time since lunch on Friday with me and drank all her milk as well. I'm so proud of her for handling this weekend so well. Now it's time for me to try to sleep for the first time since Thursday night.

SpiritHorse Theraputic Center

Emma had her first experience with hippotherapy yesterday morning at SpiritHorse Therapeutic Center. I had been looking forward to it ever since she was placed on their waiting list at the end of February earlier this year. I knew the therapy would be beneficial to her with regards to improving her balance, coordination, and understanding of movement. I also hoped it would feed her ever growing curiosity, and it seemed to do that and so much more. In her first hour of therapy, she had many first time experiences. First, we learned about the horse she would be riding. His name was Peter Pan, and he was a twenty-four year old Welsh pony gelding who loved showing affection by licking like a really big puppy.

Peter Pan

After introductions were complete, it was time to start getting both Emma and Peter Pan ready for their adventure. Emma got to wear a helmet again! But this one was a pink English riding helmet with a horse on it. Peter Pan had to be brushed and fitted with a purple blanket with elephants on it, an extra small saddle, and his bridle. He also got to wear a special handle on the saddle with buttons on it that say "GO!" and "Stop" for Emma to learn how to use. This way she would learn how to control what Peter Pan did on their rides. Emma was reluctant to help get him ready this first time, so she supervised. Once everyone was ready, it was time to begin the adventure!

Ready, set, GO!

Emma did such a great job! She completed one and a half laps before she was tired and ready to end the adventure. On those laps, she saw some beautiful scenery filled with all kinds of surprises. There were other kids riding their horses, bunnies playing tag, dogs running around, a pig that was bigger than her, fish swimming in a water bucket, and birds flying around singing about what a wonderful day it was. With so much to look at and listen to, it was hard at times for Emma to remain focused on staying on Peter Pan as he walked her around it all. At the end of their adventure, Emma dismounted ready to be held and relax. But there was still one thing left for her to do before we could leave - she had to thank Peter Pan for such a nice ride. For a reward, Peter Pan loves sugar cubes. He graciously gobbled them down, although Emma seemed a bit unsure of his table manners.

Peter Pan enjoying his sugar cube reward.

I'm looking forward to watching Emma progress as she becomes more comfortable at the SpiritHorse ranch with all her new friends. She will gain more strength in her neck with the added weight of her riding helmet as well as her core from balancing during her ride. She will also be improving her endurance as we build up to longer adventures in the coming weeks. But most importantly, she will improve her balance and coordination as she works to be more independent during her therapy rides. All of these things will get us one "step" closer to her first steps!

Hydrocephalus Association Support Group

First let me say this is so far beyond my comfort zone that I can't even see it looking back. I decided to contact Hydrocephalus Association (HA) about a support group in the Dallas area to see about meeting others that could relate and possibly give advice when needed. I found out that while there was already one in Houston, there was none in the DFW area. Then came the question of "would I like to be the support group leader for DFW?" Before having Emma, my response would have been "no thank you" without hesitation as I'm not one that is very outspoken around strangers. Now, however, I found myself wanting to try to show my daughter I possessed at least half the strength she shows me every day. I agreed to be the leader and began the process of gathering information. Luckily for me, the Support Group Liaison from HA is wonderful and a real asset.

On March 13th, I had lunch with three wonderful women. One was the leader of the support group in Houston, and the other two were a mother and daughter that actually live about fifteen minutes from me. It was refreshing to have people to talk to that could relate and give insight to what Emma and I were experiencing as well as what lies ahead. The lady that is the leader for the support group in Houston was actually originally from the DFW area. As a medical student who has hydrocephalus, she was able to talk about her experiences as well as motivate the daughter sitting across from me. The daughter, who also has hydrocephalus, was so positive and respectful for someone that was merely sixteen years old. You could tell instantly that the bond she had with her mother was strong and comfortable. It was so reassuring to see this young lady doing so well despite having challenges medically that most don't have to deal with, and doing it with such grace and maturity. I told them all that once I had all of Emma's annual appointments completed the following week, I would turn my focus to getting our first meeting set up and get that ball rolling. They seemed so excited about the chance to be involved with the group I was going to start, which fueled my desire to get the first meeting set. They were even going to pass along information through their friends/family/doctors/ to others that they knew of that may want to join the group. I was overwhelmed with the amount of support I was already seeing develop with these wonderful strangers. I could tell they were going to be wonderful people to have in our lives.

I looked at my calendar in April and decided on Saturday the 27th at 10:00 AM. I wanted it to be a weekend I had Emma and I knew that the 13th would be hard for some trying to get their taxes taken care of. I also knew that a morning time would be best for those that had children who napped in the afternoon like Emma. Once I had the date and time set, I had to find a venue. This took a significant amount of consideration because I wanted it to be welcoming and comfortable so that everyone would feel at ease given they were coming to meet complete strangers in hopes of finding support and camaraderie. I narrowed my choices down to a library, park, hospital, or my office (as a last resort). When I started checking for availability, I noticed the libraries didn't open until 11:00 AM on Saturdays so that was no longer an option unless I changed the time. Then I thought about just having it at my house. While this did pose a challenge to me, it could make others feel more comfortable. So I told the Support Group Liaison from Hydrocephalus Association of my decision and she proceeded to create a flyer and Facebook event for it to start promoting it.

I am a little nervous about this, but my nerves have calmed down as I have gotten further along in the process. I know that it will be helpful for Emma and me to be a part of the Dallas Support Group now and in the future. Any future benefits for her are worth any nerves on my part now, so here we go.