Baby Steps

Friday, June 8, 2012

Please say a prayer

I have just recently started branching out and joining groups of other parents with Aicardi girls. This is something that has been extremely difficult for me because its very hard for me to hear about the struggles other people have and most of the struggles hit home for us. I have avoided joining these forums and Facebook groups because I tend to be a little pessimistic and really am not good at meeting people. I did start talking to a few moms this week and introduced Piper to the Aicardi community. We will be attending the conference in July and I figured this was a good time to start meeting other people.

In just a few days I have already talked with parents who have experiences so similar is it almost scary. I am not used to having anyone truly understand what I am talking about and it has been really nice to share stories and concerns. I can tell this will be beneficial to have support and be able to support others.

On the other hand, it has been extremely emotional and overwhelming. In just a few short months three sweet Aicardi girls have passed, one did just this morning from an infection her body just couldn't fight. My heart is ripped to pieces for this family. Although we have never met, I feel connected. I cannot imagine the pain they are experiencing right now. These girls are such precious gifts and struggle so much. It breaks my heart. I have cried all morning thinking about these people. I know that life is precious and we have no idea what the future is for any of us but it just seems so unfair for these girls and their families. I have just sat here staring at Piper thanking God for the months we have had with her so far.

When things like this happen its a smack in the face and quickly reminds me of what is important in life. It angers me at how quick I am to complain over things that are ridiculous. I woke up this morning in a bad mood over something petty and should have been thankful instead. Being Piper's mom has made me full of joy, hope and love but also fear, sadness and worry.

Please pray for this family, our family and all the other families struggling to be strong parents of such precious girls.

Monday, June 4, 2012

vacation and other stuff

We had an amazing time on our trip to Hilton Head. Piper was awesome in the car and we only had to stop a few times. We made it there in 7 hours which is pretty good when you have a 9 month old. We stayed in Hilton head for 4 nights and drove down the Charleston to see family for a night. We had a great time, I am still amazed at how well Piper did. She is always a good baby but she was great the whole trip. Of course we went to the beach while there was a tropical storm so we had a few days of good weather and the other days we went shopping. Piper wasn't sure about the ocean, it was still a little cold and windy on the beach. She did enjoy laying on a towel under an umbrella and relaxing. We brought our jogging stroller which turned out to be the perfect place for her to relax and stay cool under the canopy. We went to the pool a few times and she really enjoyed the water. She smiled more on this trip than we have seen in the past months combined. I guess somebody loves the beach as much as us! I had some good friends who were on a trip there too so we all were able to go to dinner and catch up. It's sad that I have to go out of town to catch up with friends who live right down the road!! I guess I get a little busy.

In the past few weeks Piper seizures have stayed fairly consistent. Some days she has more than others and we are not sure why, there could be many factors. Since she is on the ketogenic diet for seizure control we have to keep her ketones in the highest level for best results. We have put her on a very strict feeding schedule to help her maintain high ketones but she seems to be lower in the mornings and throughout the day she will jump back up to where she needs to be. She does have stronger episodes in the morning so this may be why. We have included a night time feeding to help with the fluctuation of ketones. She does get to eat solid foods that we make from a special ketogenic recipe. She has had avocado, carrots, peaches, cucumber, beets, apples and green beans. She seems to like all of them and is learning how to eat from a spoon. We are very proud of her!

We also are concerned about the Phenobarbital she is on. When attempted weaning her off of it a month ago and saw amazing results as far as smiles, alertness and increase in muscle tone. Unfortunately her seizures increased dramatically so we had to put her back on the medicine. We have done research and decided we wanted to try another medicine in hopes that it would control seizures but not have the nasty side effects. We are starting a new medicine for two weeks and will start the weaning process of Pheno once again after the new medicine is in her system. Hopefully we will see better results with minimal side effects. It's just a chance we have to take because we have no idea what it will do for seizure control. If you are praying for us, this would be an excellent thing to pray about! It makes us nervous not knowing if the new medicine will work.

She has still not started physical therapy here (UGH) because they are so busy that she will not be able to be evaluated until the end of June. This is nearly a 2 month lapse in time from her previous sessions. This is beyond frustrating and I can't do anything about it. I have done more research about exercises and massages to do to help her while we wait and that is all I can do for now. It's amazing how much you can find on the internet when you take the time to look. She will also be getting vision therapy and occupational therapy at some point. I am just a naturally impatient person so it's driving me crazy! The good thing is she is still motivated to sit  and I just do everything I can to facilitate her interest. I can see a difference already and hopefully she will continue to get stronger.

Everything else is pretty normal with us. Justin is traveling like crazy and is only here on the weekends. He was out of town 3 weeks in May, Will be out 3 in June, and will be out almost 3 weeks out of every month until October. I told him the next time I see him I will be 32 years old.