Talk about a case of the "Monday's"

So my plan for Monday was to get a haircut and then hang out at home cleaning and doing laundry. Basically stay home!!!! Well things change quick when you have a special needs child, but I guess this is our new "normal". I'll explain a little more....

So last Friday Emma started having infantile spasms which is a type of seizure. I charted them so that I could email her neurologist and contact her on Monday.  So Sunday night I sent her an email and Monday morning at 9 AM I got a phone call saying that she wanted to see Emma as soon as possible to talk about a new medication and the side effects of the different types of medications. So I quickly went home dropped Ava off at her amazing grandma and grandpa's and we took Emma to see the neurologist at 11 o'clock. We discussed various meds and side effects. We decided on one, it is a steroid she has to be one for one month and hope that it will help to eliminate the infantile spasms. If these spasms aren't taken care of it will effect her more at the age of 3 and 4 than now (limited development). Where she will already be delayed we were so grateful that we caught these early. After that appt it was off to primary children's to get an EEG done at 1 o'clock. She was such a trooper during the EEG.  See pic below.....

 After the EEG we were sent home to wait for the results. Since our neurologist is absolutely amazing she called us within a few hours. The results were good for the most part. Since her first EEG she shows more epilepsy activity (which was expected) but the good news was the infantile spasms most likely haven't started to effect her brain (they didn't show up on the EEG). We caught it early enough so if we can get this medicine to work it would be the best case senerio for Emma. Most people let there spasms go for weeks before they call the doctor because they are hard to recognize. Good thing I'm an annoying over protective mother haha. They also said how great it was about recognizing her seizures at 4 days old too. For once I felt like a good mom not a crazy mom haha. 

So we started the meds soon after we got home and it was a disaster she stopped breathing and projectile vomited it all after only 1 ml yes 1!!! I was so scared. So we called the pharmacy and they said they would flavor it for us because it is very very nasty. It is now grape flavored and she took both doses today (Tuesday). Don't get me wrong it's not easy it takes about 10-15 min to get 4 ml in her and then again later in the day so she takes 8 total. The side effects are chubby red Cheeks and stomach issues. She was already on Zantac so that's good to help with her stomach. As I mentioned above this is for hopefully only one moth of this medicine. But during this month of meds and next month (so 2 months total) we have to be very careful who she is around due to the fact that it suppresses her immune system which was already a concern before the meds. No one can have vaccinations or live vaccines and be around her. Including herself so we will have to push back her 6 month vaccinations (sure she's sad about that lol). I am sure I am missing some info so if you have questions or if you ever have One please leave a comment here or on our Facebook page. We love you all and thank you all again for so much love, support and prayers🙏🏼💕 Embrace Life 💕

It's always nice to leave on a happy note so here is a link to cute video of Emma talking away to someone....I just wish I knew who 👼🏼. 

https://youtu.be/M_LryaPqfJQ

One more thing....how can someone who has been through so much in her short 4 months of life and still be so happy. This girl is a true miracle and blessing.