Decisions, Decisions, Decisions.....

As Brandon and I laid in bed on Monday night we wondered if we made the right decision...again. We talked about how what we thought used to be tough decisions have never compared to the decisions that we have had to make over the last 5 months. We hope and pray that we are making the right choices for Emma but only time will tell. On Monday we had another appointment with her neuro and we sadly have to say that the high dose steroids did not work :( so we are now in the process of tapering down her dose so that she is safetly off the medication. We talked about some other medication choices that we could try to help get Emma's infantile spasms to stop. This is tough for us for a couple reasons, first Brandon and I are working opposite schedules so that we can both be home with the girls (I went part-time) so that means he couldn't be and the appointment since he doesn't get off until about 7-8 pm. I was able to have him on speaker phone to help talk with the doctor and be apart of the decision making. One of the new options of medicine has a side effect of vision loss and we decided NO WAY vision is one thing that Emma does have and we do NOT want to take that away from her. Another choice was a diet (formula) but for this she would have to be admitted to the hospital so we also decided we didn't want to try that just yet either. So we finally decided to increase the current dose of Phenobarbitol that she is on already in hopes that she had such a great reaction to it the first time to stop the other seizures that maybe we might have the same good luck with the infantile spasms! We currently just gave her the 3rd dose of the increased pheno and we haven't seen much improvement (4 clusters yesterday, 3 today) but we are still hopeful, they say to try it for about a week before making any other decisions. We will contact our neuro again on Monday to update her on Emma and to see where we go from here.

Some of you have been asking what do the infantile spasms look like so I have decided to post a video for you. Someone posted a video for me to see to help know what was happening to Emma and I thank those people because infantile spasms often get misdiagonsed for acid reflux. Please if you feel something is not right with yout kiddo follow your gut as a parent I promise, you will rarely be wrong.



Here is a video from the day we took Emma to Primary Childrens Medical Center at 4 days old. I wanted you to be able to see the two different types of seizures that she is dealing with. Watching these videos clearly shows the difference between the two types. (big sister was really nervous and
didn't really understand what was happening so instead of crying she did what all kids would do try to make it a funny matter) poor kiddo has had to grow up fast but now she is awesome when Emma has a seizure she rubs her arms or tummy and says it's ok Emma big sister is here. Wow she melts my heart, the love they have for each other is the greatest love I have ever seen!