Two is Greater Than One
Jack is two months old - how can that be? We can't believe it! It has also been six weeks since we were discharged from the hospital. Some days hours are better than others and we are taking it a day at a time. Do I sound like a broken record? I hope not because that is the only way we know how to get through each day. The days go by so fast and I have told a few of you that I feel like it is groundhog day each day - ha! It's definitely not a bad thing since I do love schedules and routine as well as holding sweet Jack. Can any of you parents relate?!
I wish I had better news about Jack, but the last few weeks have been hard. Kyle and I started to notice a new movement/sound that Jack would make when he was awake. Think of a very large hiccup that moves your body. It wasn't like his normal hiccups that I have heard so I took a video and sent it to Jack's neurologist. We already had an upcoming appointment with his doctor, but when he reviewed the video he decided to schedule an EEG as well just to make sure everything was okay. The EEG didn't hurt Jack at all, but it was so hard to see our baby hooked up to 10+ electrodes all over his little head. Unfortunately and fortunately, Jack woke up during the EEG and started the hiccup like sound and movement, which we needed to happen so the doctor could see it. Once the doctor had a chance to review the results he came into the room and my heart sank. We both knew it wasn't going to be good news. He let us know that unfortunately Jack has now developed epileptic seizures and that is what is occurring during the hiccup like sound/movement. We are devastated not only because we can now see the seizures, but according to the doctor they are the worst kind. I'm not sure if any of you have had experience with or have seen a seizure, but they are awful to watch mainly because we cannot do anything about them except wait them out. It's not the typical seizure that you think of like in the movies, which we are glad. However, now that we know what is happening it's so hard to watch. He's 2 months old, he doesn't deserve this. His doctor prescribed him to another medicine to try and control the seizures and we are so very hopeful. We haven't noticed significant changes, but our prayers remain constant that they will help. Our biggest concern is making sure Jack is not in any pain and per the doc he doesn't feel pain like any of us would. He says it is mainly irritating to him since it wakes him up and moves his little body. We truly hope this is the case. This news hit us hard because we had found a sense of normalcy and now it was another setback. What's the saying? One step forward, a few steps back. Your prayers are appreciated that Jack really cannot feel pain as well as that the medicine will help him.
On a more positive note we finally had pictures taken with our sweet boy. Kate Brooks, you are amazing and we are so thankful you captured our Jack Evans. I've shared the pictures on Facebook, but I wanted to share here too. There is one specific picture I didn't post because I wasn't sure if I was ready, but I am now. The picture is raw and real and I am hopeful it does not upset anyone. It shows our son with his surgery scar and G-tube button. This is Jack Evans and we love every inch of him.
Please enjoy the rest of these beautiful pictures and call Kate if you need someone to capture your family!
Thank you for your continued thoughts and prayers. We love you all!
I wish I had better news about Jack, but the last few weeks have been hard. Kyle and I started to notice a new movement/sound that Jack would make when he was awake. Think of a very large hiccup that moves your body. It wasn't like his normal hiccups that I have heard so I took a video and sent it to Jack's neurologist. We already had an upcoming appointment with his doctor, but when he reviewed the video he decided to schedule an EEG as well just to make sure everything was okay. The EEG didn't hurt Jack at all, but it was so hard to see our baby hooked up to 10+ electrodes all over his little head. Unfortunately and fortunately, Jack woke up during the EEG and started the hiccup like sound and movement, which we needed to happen so the doctor could see it. Once the doctor had a chance to review the results he came into the room and my heart sank. We both knew it wasn't going to be good news. He let us know that unfortunately Jack has now developed epileptic seizures and that is what is occurring during the hiccup like sound/movement. We are devastated not only because we can now see the seizures, but according to the doctor they are the worst kind. I'm not sure if any of you have had experience with or have seen a seizure, but they are awful to watch mainly because we cannot do anything about them except wait them out. It's not the typical seizure that you think of like in the movies, which we are glad. However, now that we know what is happening it's so hard to watch. He's 2 months old, he doesn't deserve this. His doctor prescribed him to another medicine to try and control the seizures and we are so very hopeful. We haven't noticed significant changes, but our prayers remain constant that they will help. Our biggest concern is making sure Jack is not in any pain and per the doc he doesn't feel pain like any of us would. He says it is mainly irritating to him since it wakes him up and moves his little body. We truly hope this is the case. This news hit us hard because we had found a sense of normalcy and now it was another setback. What's the saying? One step forward, a few steps back. Your prayers are appreciated that Jack really cannot feel pain as well as that the medicine will help him.
On a more positive note we finally had pictures taken with our sweet boy. Kate Brooks, you are amazing and we are so thankful you captured our Jack Evans. I've shared the pictures on Facebook, but I wanted to share here too. There is one specific picture I didn't post because I wasn't sure if I was ready, but I am now. The picture is raw and real and I am hopeful it does not upset anyone. It shows our son with his surgery scar and G-tube button. This is Jack Evans and we love every inch of him.
Please enjoy the rest of these beautiful pictures and call Kate if you need someone to capture your family!
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| The sign behind us means even more to us now |
Thank you for your continued thoughts and prayers. We love you all!
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