Have you ever wondered if Hayden has tried more than one medicine to stop these seizures? Does Hayden take any medicine for his seizures? Does Hayden have a feeding tube? Does Hayden do therapy to help with delays? All of these questions are asked weekly. Hayden is on four seizure medicines and one acid reflux medicine. He also has a fifth seizure medicine that we use in case of emergency medicine. He takes a LARGE amount of each of the medications. He takes each of his medicines two times per day. We have tried almost EVERY seizure medicine possible. I have a hard time understanding how we can have 10 to 25 seizures each day with all of this medicine. What would life be like without all of the medicines??!!?? Scary thought huh????
I have one medicine that is a sprinkle. Mommy and Daddy place it in with my baby food. I am SMART! I close my mouth tight when its medicine time! I dont like bitter medicine!
Usually feeding tubes are associated with sick children. I am not here to say that Hayden will never end up on a feeding tube. I am here to tell you that at this moment we are enjoying formula and baby food. I remember being in the NICU feeding Hayden for my first time out of a “bottle.” The nurse said that I must allow Hayden to consume the two ounce bottle in a maximum of thirty minutes. He just kept falling asleep, looking at me, or lightly sucking. I was so discouraged. My first time to feed him should have been a pleasant experience. Instead, I felt like a new mom that was LOST. We came home from the hospital the following day. I had sterilized all of his DR. BROWN bottles. My FAILURE feeding was soon back. He refused to eat for me. My sister in law informed me that it took her forever to find a bottle for my nephew. She went out and bought a bunch of bottles. They were all failures! Madelyn Cook came to visit. She had the solution and gave me a new bottle out of her car. Once again FAILURE! Kelli and Clayton gave us a gift basket full of necessities at the hospital. They gave us our LIFESAVER. A medicine dropper with a nipple! He took it PERFECTLY! The only problem was that it only held a half ounce. Feeding was a two man job. Brent would feed as I would prepare more milk into the medicine dropper as it got empty. The problem was that it was too COMPLICATED.
We settled with the NUK for a while. Feeding Hayden was not much fun! I talked to a speech therapist. She actually made me feel better about the feeding tube. We were real close to scheduling his appointment. We schedule a suck and swallow test at Batson! He past it with FLYING COLORS!!! Are you serious Katy? How could this be possible? She said he needs a thick consistency. My grandma came up with the solution that now makes feeding ENJOYABLE! (well except for when he spits it back on usJ)
Haha--- this is a joke! She really DID come up with the solution! She found a baby food feeder made by munchkin. We mix baby food and formula together to gain a thick consistency. He LOVES eating! We LOVE feeding him! Thank you MAWMAW for coming up with a way to ENJOY feeding this angel! For all the new moms out there BUY ONE OF THESE! It is great for a Healthy baby to enjoy rice bottles or baby food without have bowl and mess!
Thank you MAWMAW! I am so glad to ENJOY eating! Your AWESOME!
We stay REALLY busy! I often get confused on times, amounts, dosages etc! We are constantly swapping and changing medications! Also, all the medicines are why we have to get blood drawn often. We have to check his levels. A special thank you to our pharmacist David Brown for keeping up with all of this for us! We spend a lot of time in the pharmacy! (We highly recommend him!) Have a blessed day! We are off to decide which outfit to wear in our pictures tomorrow J
Please continue to pray for a LITTLE BIT OF HEAVEN ON EARTH FOR HAYDEN! A seizure free day feels impossible! We believe that we will prove the impossible wrong!