Progress

Last weekend, Seren started having more seizures. The duration wasn't as long, and they didn't seem as severe, but she was having them with increasing frequency. Then, on Tuesday she broke out in hives. They were all over her body from head to toe. Poor baby just did not look like she felt good at all. On Wednesday she had her two month well-check at the pediatrician. He looked her over, said her ear was still infected and that the hives were an allergic reaction to the antibiotics. She was having a seriously rough week! After conversations with multiple doctors, Seren was placed on a new anti-seizure med and a new antibiotic. Thankfully the new system seems to be working - within 24 hours she was looking a thousand times better and showing improvement on all fronts!

My mom has been in town since Tuesday to help us out. G is spoiled rotten (and frankly, so are Lance and I). The timing was nice since mom was able to watch Gray and help out at home which allowed me to focus on what we needed to do to make Seren more comfortable. Mom also helped get Gray out of the house for some summertime fun and even got Lance and I out for a couples night. Mom is leaving today despite our best efforts to convince her she should move in permanently:)

After her big week, Seren had a huge development yesterday. We aren't positive- but yesterday both mom and I thought we saw Seren smile! Even the possibility was thillling. It was a fantastic ending to a long week!

Happy Father's Day

Happy Father's Day to every wonderful Dad out there. G and S are very lucky to have Lance as a daddy and I am very lucky to have the wonderful dad I grew up with! Happy Father's Day to you both-I love you.

Jennifer

Back to the Doctor-

Seren started on Phenobarb last Thursday night. We were excited because it initially seemed like Seren's seizures were getting less frequent and less severe. However, over the weekend Seren's condition changed and she started having seizures again. She also became very irritable and fussy. Up until this point she seemed very content and comfortable and rarely ever cried. We were all sure something was wrong but none of us could pinpoint a cause. The nurses called and confirmed the the meds weren't the cause of her agitation but she just wasn't improving. The head nurse (in her infinite wisdom) was concerned that we might be missing another cause of Seren's change in behavior and recommended we take Seren to the doctor. And so, yesterday morning, we found ourselves at the pediatrician's office, where we were informed that Seren has an ear infection-just like the rest of us!

Seren's ear infection was actually good news. It could be that the seizures and fussiness are just due to the ear infection and not an indication that the Phenobarb won't work. We know she didn't have an infection last Thursday because they looked in her ears at Duke so its likely that she developed the ear infection and got fussier and fussier as the pain got worse.

I had been feeling pretty low because I still want to believe that everyone is wrong about Seren and that her brain is really in much better shape than predicted. This little hope/delusion/whatever you want to call it, always gets smacked down whenever I have to read a doctor's report. I got the report from Duke this week. I hated it. On top of that, I couldn't sleep at night because all I could worry about was that Seren was trapped in pain, crying, fussing, having seizure after seizure. However, now we know Seren isn't totally trapped. She can tell us when she's uncomfortable. Not only did she get fussy with her ear infection but we know she doesn't like getting her toe pricked to draw blood and we know that she can be comforted afterward. So it seems that despite all the bad news we did get some good news. Poor baby has an ear infection (and those darn things HURT) and I hate that for her. But, at the same time I'm so glad she let us know and that its something so easily fixed! The antibiotics should start working by this weekend so hopefully we'll get some idea of whether the seizures are slowing down also. Here's hoping!

4 Gens of Jens

Ok-so I'm sure many people have wondered about Seren's name. First, how to pronounce it. Its pronounced like the name Erin but with an "S" in the front. Its definitely a confusing one as far as pronunciation, and, we know its unusual, but, we like it. Secondly, where did we get it? We actually picked the name for our future baby girl on my 30th birthday. Lance surprised me for that birthday with a visit to one of my BFF's who lives in NYC. While there, Lance and I saw the name Seren. We thought it was a cool name but we weren't really sure it was a "real" name. Later, I checked online and found the name was a was a Welsh name translating to "star". We also ended up meeting a girl named Seren a few weeks later (She worked at our vet and we met her when we were picking the dogs up). All of those factors made both Lance and I know there would be a Seren. We didn't know how she would end up with us, or when it would be, but we knew there would definitely be a Seren Windley.

Another check in the plus column for the name Seren was that it was just close enough to the name Susan which was both my mother's and my (completely superfluous) first name. My mom was named Susan after one of her grandmothers. Seren was close enough to Susan for a family tie-in without being the same.

As for Virginia-at a random point in my life someone pointed out that every female on my mom's side of the family is named a "Gen/Jen" name. My grandmother is Genevieve, my mother Jeanette, and then me, Jennifer. Further, my mother's other grandmother was named Virginia. Put that coincidence together with fact that Lance and I are both from Virginia and really there was no question whatsoever of what our baby girl would be named!

My use of the phase"Only God Count's the Stars" is a complete coincidence and a phrase I found from someone else's blog when I was researching high-risk pregnancies. I totally stole it from another mother because it fit so perfectly for Seren. I had planned on painting that phrase above her bed. I still may be able to tackle that project. Right now I use it to tell people her story.

So that's the history of Seren's name and part of what led us to this blog. With all that history, the fact that we were not only able to bring the four females of four generations together but that those four females are all named after each other was a HUGE deal. When my grandmother came to Raleigh , we were able to take this picture. It is something that means a great deal to us. So there it is-the four generations of "Jen's".

Day at Duke

Yesterday was the "Big Appointment" at Duke. We sat down with four doctors and a social worker to discuss Seren's health. Seren's condition is not one that can be fixed. Her condition isn't something for which we can go and find a cure. The goal of this appointment was to get a medical team in place to make sure Seren will be as comfortable as possible and be encouraged to reach her full potential- whatever that might be. I think we really made great strides in reaching that goal at yesterday's appointment.

On a personal level, I really like the Doctors as people and their personalities. This is secondary to their medical knowledge, but I still think as far as implementing strategies for care of your child its important to connect with the team of caregivers. I also thought it was pretty neat that the entire team was female! (I know that shouldn't matter but since I spent years of work sitting in rooms with only men I just thought it was neat to see an entirely female team-you know-girl power and all that:)

As far as her general physical well-being baby girl looks pretty good. She is growing and gaining weight. I think the most immediately productive outcome of this appointment was that we reached a decision on how we are going to attempt to control Seren's seizures. She started on medication last night, so hopefully we will see some progress on that front. Everyone agreed that we thought the seizures were uncomfortable for her. Hopefully the medication will get those under control and eventually stop them entirely. She is still in heart failure but its not causing her any discomfort at this point. We will have a follow up appointment in a few weeks to look at her heart again.

No one knows what Seren will be able to do. We don't know if she will be able to interact with her environment or meet any developmental milestones. I trust the nurses at her facility a great deal more than I trust a neurologist or any other physician's opinion. They have seen many many of these children and they see them day in and day out. Right now the general consensus is that we will have to wait and see. There are children who are initially given a very grim diagnosis and who have serious problems with their brains that are able to surprise everyone and interact with their environment in certain meaningful ways. Some children are even able to make great strides. Seren's condition is complicated by the fact that in addition to being severely impaired she is also blind. Even without the malformation of her eyes, Seren would likely be blind because of the lack of function in her brain; however, I believe the inability to see images makes her condition more limiting.

We probably will never know what Seren understands or feels. There is a good chance she won't progress beyond where she is now. However, there is always hope. The only way we can say with certainty that Seren won't make any progress is if we don't try. So rest assured-we will try and try and try. We will give her every chance she deserves! Thanks to everyone who offered encouragement yesterday-it was a rough day but still a day to be thankful.

FINALLY!

Well last night after a trip to urgent care where I was informed I had a sinus infection and an ear infection (what am I-a five year old?) I was told that I could go look at Seren while wearing a mask. After 24 hours on antibiotics I'll be able to hold her again. So last night at eight o'clock I tore over to see baby girl as fast as I could. She looked so big! She has definitely grown this week. She is also somewhat of a night owl so she was wide awake and very alert. She kind of turned her head when I came in so I don't know if she heard my voice or could detect a shadow at the side of the bed. Maybe it was just wishful thinking on my part on either count. Either way, it definitely was wonderful to see her and I'm counting the minutes until I can hold her.

Seren will be having a very social Saturday. My mom and grandmother are coming to town so my grandmother can meet Seren (Poor Dad got stuck at home watching the dogs). I can't wait to get a picture of four generations of the "jen" names in one place. My parents have been great about coming to Raleigh to visit and help us. I added up their time in the car since Seren's birth and it came to over forty hours! Seren also gets to see her other grandparents today. Lance's parents have been wonderful about coming to visit Seren. They come and hold her and cuddle her at least two times every single week. It warms my heart to know that when I can't be there Seren is still getting lots of love and family time. Lance's parents moved about an hour away from us last summer and I must say that it has been great having them so close. All of our parents have been so supportive of Seren and of our situation in general. Seren is a lucky girl to have four such wonderful loving grandparents and to get to meet her great-grandmother today! Should be fun!

Rendered Speechless

We've had a long week here in the Windley house. I got that cold/sore throat combo that has been going around which has meant that I haven't been able to see Seren since Sunday (although Lance assures me that she is doing wonderfully). Its KILLING me not to see her. I know that right now my staying away is the best thing for her since we can't even consider exposing her to something that might make her sick but for me personally its been awful! It just goes back, yet again, to what I have said since the beginning- as a parent when given the choice between you suffering and your child suffering you pick yourself every time. I just remind myself I should be thankful that I'm the one that came down with the cold instead of Seren.

One side effect of the cold has been that I completely lost my voice. Nothing. I could barely whisper. I have never completely lost my voice before. I always knew I was a chatterbox but didn't realize how much until I was rendered completely speechless. I found it very upsetting. Losing my voice really made my heart ache for Seren, who we have been told will never speak. Just not being able to speak was isolating so thinking that not only will she not be able to express her needs and wants but that she won't be able to see or possibly hear the people around her has really hit home this week. I know her brain operates differently than mine and I know we will do everything possible for her to communicate in her own way but I have really struggled this week with understanding what the world is like for her. Please pray that we can see God's plan for our baby girl. I know He has something in store for her that I can't possibly comprehend so we really need prayers to help us see and do what God intends.

Along those lines, we have been able to schedule our appointment at Duke for next Thursday. I'm not exactly sure what we will do at the appointment but they are closing the clinic for the afternoon so the doctors can see us. I'm quite pleased with our pediatrician for getting us into this program since I think it really will help us get a comprehensive plan in place for her care. I'm ready for her to start her therapies also. I had initially thought we should hold off on them when she was so weak physically but since she seems to be stabilized I want to start working as hard as possible on having her reach her full potential in whatever capacity that might be so hopefully once we go to Duke we will have some plans in place.

Several people have asked about my friend's baby. I am happy to report he was born last week and came through his heart surgery with flying colors. He had a great day yesterday and there is every hope that he will come out of this journey a healthy and happy little boy!