Medicine: We visited the neurologist in Knoxville back in June and he suggested taking Piper off phenobarbital because it causes such dramatic changes in muscle tone. She has very low muscle tone and is still not strong enough to sit, push up with her arms or keep her back straight. It has become increasingly difficult to hold and carry her. She is 22lbs and 30 inches and we have to cradle her to carry her. I'm not sure how much longer I can safely carry her and getting her from the car seat to stroller is starting to get a little overwhelming. We put her on another medicine (Zonegran) and the plan was to wean her off of phenobarbital and hopefully see a stronger baby. We had to take a time out on this wean due to another change. See below
Ketogenic diet: Piper goes to Emory hospital in ATL every six weeks for a ketogenic clinic and meets with her neurologist there. Justin was out of town for the most recent visit so I made the trip with a sweet friend who kept me company. We left at 10am and got home at 10pm....it was a long day for all of us. It is definitely a harder trip to make now that we are in Knoxville. With that being said we really had to make some tough decisions. We have not seen clear cut evidence that the diet is working for Piper. There are too many factors and it is impossible to tell what exactly is working what isn't. The diet works wonders for some people but we didn't see a huge change and the side effects once again outweigh the benefits in our situation. We talked with the doctor at Emory and decided that they only way we would be able to determine if the diet is working is to wean her off it and see if her seizures increase. So we started the wean on June 13th.
So here is where it gets really confusing (if you aren't lost already!) Piper had a "new" seizure the night before I went to Emory. It looked like what you would consider a "normal" seizure but it also looked like more severe spasms. The tricky part is this happened before we started the wean. After the wean began (the following day) she did not have an increase or change in seizures for three days. We thought we were in the clear....until Father's day. Piper had two big "new seizures" father's day morning that lasted longer than we have seen so far. Poor Justin, not the first father's day I had planned for him :( Of course it was on a Sunday and we couldn't call the doctor so once again we become the doctors and made decisions of what to do next. We decided to continue with the wean since we saw this new seizure before we started the wean. The wean takes about 2 months to do and right now we are about halfway through. So far Piper has had 5 "real" seizures since we started. We have come to the conclusion that it is not the diet but possibly from her getting older and we are starting to see things change. You have no idea how much time we spend talking, looking at our research (yes we have all of her seizures in an excel file) and coming to these conclusions. One thing I have learned through all of this is my husband is the smartest person I know and I thank God every day for that!! I can barely read the seizure graph he made......
So long story long, we are continuing with the wean and praying things stay somewhat consistent. We really want Piper on a more nutritious diet and it would help with some of the stress. Knowing that I don't have to carry a gram scale around in my purse and force feeding her to make sure she eats all her food would really help me out! Once we are off of the diet we will start the phenobarbital wean and maybe we will see a stronger healthier baby.
Therapy:When I was teaching I had a few "persistent" parents and many times I had trouble understanding their special requests. I am that parent now. I get it.
I think God made me stubborn, persistent and "slightly" crazy for a reason.
How does this apply to therapy? Let me tell you. It took nearly a month for Piper to get evaluated for therapy. She just now started OT and will start PT soon. I have called nearly every day to see if there are open appointments because it is so busy that they can't find a spot for her. I'm sure the lady who does the scheduling would like to block my number but I would probably just drive down there and talk to her in person. Seriously, I have no problem with that. The point is my days are filled with trying my best to get the services she needs even if it means calling someone a hundred times or sharing my opinion about the situation in the nicest way possible. She has OT this week and PT next week, we have already learned some new activities from her first OT session. I look forward to learning more. She will also start speech therapy once she is off of the diet and eating regular food.
Developmental: Piper has made some progress and is physically around 4 months old. She can hold her head up and look around while on her belly. She has started rolling from belly to back and is starting to use her arms. She loves being on her back and kicking her legs and swatting toys on her toy bar. She plays independently for long periods of time. We work on sitting and helping her back get stronger all day.
We are working on helping her use her hands to reach out for toys and play. She does not seem interested in doing this but we have found a few things that get her attention. I actually taught her to reach out for my hand and she will do that if she is in a good mood. Her vision impairments probably have a lot to do with the disinterest in playing with toys so we use high contrast and light to motivate her. I use Christmas lights and bright colors against a black background and she has started paying attention more. Our vision specialist suggested a lot of activities to help train her brain to focus and track objects.
She has become more vocal since we started the wean off the diet. She does not babble or make specific sounds but is experimenting with different noises. She reacts to situations with different sounds and you can tell when she is happy. It may be the most basic forms of communication but we are able to know her mood based on these noises.
With all of the changes it is nearly impossible to have much normalcy! Piper's seizure episodes consist of 15-20 minutes of the loudest screaming and crying you have ever heard and it really helps if we have a place to lay her down and make her feel comfortable. You can't pick her up or soothe her so you basically just wait it out. So things like church, going out to dinner and going to the store become the biggest challenge of our day. Its a lot easier when Justin and I go places together because one of us can take her out to the car while the other takes care of what we were doing. I rarely go places alone, and if I do I have my escape plan ready. It's just a part of life and I am gradually becoming accustomed to it.
I will keep everyone posted on how the diet is going. Thanks for reading this!
Her new high contrast room to help with her vision impairments
Watching baby Einstein on the Ipad
Working out on the exercise ball