Once Tiara got used to having a baby in the house it became very clear she would tolerate Trinity as long as I still continued to carry her every where. At first it seemed pretty impossible to carry them both at the same time so I spent the first month on the couch or in the bed nursing Trinity while Tiara laid next to me always trying to put her hand down my shirt. After I had stopped nursing Tiara she still always wanted her hand near my breast, as I assume it was comforting for her, and once Trinity was born this behavior really escalated. So whenever I nursed Trinity, Tiara felt compelled to snuggle up on the other side of my chest. As you can see from the look on Tiara’s face she wasn’t doing well and was having so many seizures everyday right after Trinity was born. I hoped to have a little reprieve from the constant seizures but just the opposite was happening. She was heading down a bad path wherein she kept having status seizures, seizures lasting over 10 minutes, and so her neurologist prescribed Diastat. Diastat is rectal Valium that must be administered if a seizure lasts over 10 minutes. The doctor trained me how to turn her on her side and inject the Diastat into her rectum, and then watch to make sure she was breathing normally. Really, I mean could it get any worse? I first time I had to give her the Diastat it was terrifying. She was seizing and I was watching the time and I could tell this seizure wasn’t going to stop. I put Trinity in her crib and got everything prepared and then called Lou crying, saying ” I don’t think I can do it.” He told me ” You can do it honey, it will ok.” It is hard to explain why giving the diastat is so hard. It isn’t that it grosses me out, I guess it is the fact that I have to drug my child with valium to stop this horrible seizure and if I give her too much she may have trouble breathing because she is too sedated. Of course the doctor prescribes a specific dosage but like with everything the doctor gave me discretion to use more Diastat “if needed”. So I was having to make medical decisions for Tiara and then carry them out myself. It is really a lot of pressure on a person, plus the fact I just gave birth one month before didn’t help with my mental state.
Tiara and I both survived the first time I gave her the Diastat and unfortunately I got really used to giving it to her as she was needing it every other day. Prior to getting pregnant with Trinity I had committed to being a bridesmaid in one of my best friends wedding who was getting married in Hawaii. Once I found out I was pregnant I contemplated backing out, but Beth had been my friend since 3rd grade and I really wanted to be apart of her celebration. Lou and I brainstormed the idea and realized Trinity would almost be 3 months in July and decided if his mom came with us to Hawaii we could probably pull it off. What we had not anticipated was that during the time we would be going to Hawaii, Tiara would not be medically stable. We were so excited for the trip but terrified because we had never flown with Tiara or taken her much of anywhere. What if she had a status seizure on the plane and the Diastat didn’t work. Then what. I had formed so many What if questions in my mind, but we had already paid for all the flights and the condo and the wedding clothes and Tabitha was thrilled to be going on vacation, so we went. You can only imaging the amount of luggage we had for a 3 year old special needs kid, a 9 year old and a newborn. Two strollers, two car seats, books, diapers, medicine up the kazoo, videos, dvd player, toys, clothes, back up clothes, wedding clothes, I mean it was never ending. Plus I had to carry them both, or rather they would cry if I didn’t, so I usually did. The good news was that I lost all my baby weight in a couple months without even trying,with the assistance of my weight lifting routine.
Tiara was in her Wheels on Bus, I’m a little Teapot, Itsy Bitsy Spider and Twinkle Twinkle Little Star stage, so that meant someone had to sing one of these songs at all times in order to keep her calm. Each song has about 10 verses I memorized from her Iza Trapani books but my mother in law didn’t know all the verses except to the Wheels on the Bus song, so she sang that song about 100 times by the time we checked into LAX, went through security and boarded the plane. Once on the plane I remember everything being ok, except for Tiara throwing up as we ascended and descended, apparently she gets motion sickness. I developed a special skill for blocking unfavorable memories, so that is all I remember from that flight. I do remember that we had a really nice , well I wouldn’t say really nice, but a condo/large hotel room, with a kitchen, several bedrooms, working DVD player and an amazing view. The second day we arrived Tiara had a status seizure and I had to give her the Diastat but she recovered quickly and we were able to stick with the wedding schedule.
The day of the wedding, I took Trinity with me all day as we all got our hair and makeup done so I could nurse her. With all my girls I have never been able to pump breast milk. I don’t know why, but that meant I always had to have my babies with me at all times or they didn’t get to eat. Once it was time for pictures, Louie showed up with Tabitha and followed behind the Limousine with Trinity in her car seat and stayed with the wedding party just in case Trinity got hungry. Always the sweet hubby. Grandma stayed with Tiara in the room until the reception and then at the reception Tiara put on her dancing shoes and had a great time.
The day after the wedding we did more sightseeing and Tiara had another status seizure. But once again the Diastat worked and Tiara recovered fairly quickly. We went to this super cool, I think it was a cultural center, can’t remember what it was called, I just remember it was Tabitha’s favorite part of the trip. It was so hot and humid and Tiara and I were dying of heat but Tabitha didn’t want to leave. At this time we didn’t yet know that Tiara didn’t sweat so she was constantly overheated which was probably one of the reasons she was having so many seizures. Her face was always beet red so I just kept dousing her with water.
The next day we flew home and the trip was a success. The week after we returned from our vacation Lou was starting a new job at at new dealership with a new position. It was a big increase in pay and also an increase in responsibility so we were both excited but nervous, because we knew he knew he wasn’t going to be at home as much to help me with the girls and he had been at the same dealership for 8 years so now his job security was gone. If this didn’t work it, he would have to start all over. He started his new job, August 1, 2002 and on August 18, 2002 Tiara had another status seizure but this time the Diastat wouldn’t work. She had sat down on our leather sofa with the broken spring and it make a high squeaky noise. She instantly went into a tonic clonic seizure but after the first dose of Diastat she was still shaking. I paged her neurologist but realized after it had been going 20 minutes I had to call 911 again. So I did. While I waited for the ambulance to come, I called my mom and Lou as I needed to someone to come and be with Trinity and Tabitha before I needed to leave in the ambulance with Tiara. Luckily we had amazing neighbors and Tabitha ran across the way to get Leslie so I knew that she would take care of my girls if I had to leave before anyone in my family arrived. My mom came soon after we left for Hoag in the ambulance and Lou met me at the hospital. Once again they started pumping Tiara with drugs but this time after 2 hours the seizure still hadn’t stopped. Like last time, they had to intubate her so I was more prepared for that, but what I wasn’t prepared for was for the ER doctor to stand at the foot of her bed after 4 hours and say “please God, stop this seizure.” He prayed for Tiara because nothing else was working. She was in a medically induced coma at this point and he couldn’t transfer her to CHOC until she stabilized and yet he couldn’t get her stabilized no matter many drugs he pumped into her. That was the first time but not the last time a doctor has resorted to praying for Tiara to push through as there was no medical options available.