Maybe because we don't always have the hustle and bustle that weekdays bring, but truly Saturdays are the hardest...Saturday mornings in particular. This morning I awoke to a thousand things running through my head. One of them being Sam and the fact that we still don't have seizure control. This week I took a leap of faith, I contacted my primary care physician and ask they begin the procedures that need to be taken for me to take Sam "out of network". There has to be more for my sweet precious little girl...increasing medicine for me right now is not an option. Steve and I didn't make the commitment to go on the Ketogenic Diet to increase her medicine. And that is why this Saturday morning is so hard. While I have the counsel of some amazing people and I appreciate their opinions and support, it is the support and decisions that I made with Steve that I miss. That you are my soul mate, and so understand what I am feeling and hurt when I hurt kind of connection.
So say a prayer for me that a "second, third, or fourth" opinion is going to be what is needed to help Sam. I have also contacted St. Louis Children's Hospital as they are one of the top hospitals that deal with children with epilepsy, and they are the closest to us. Still waiting to hear back from them...but will be persistent until I do. I have however decided that if I need to go elsewhere I will. I have also contacted a nutritionist that is highly renowned for looking at blood samples and tweaking the diet to help become seizure free. No stone will be left unturned until I have answers for my precious baby girl.
We have our neuro appointment this week with her current doctor. Please pray that I have the courage and words to stand up to this neuro if he says he wants to increase her meds. Pray that he truly hears what I am saying and compromises with what I am wanting too. I am already dreading this appointment.
Watch out world this momma bear is on the prowl.
We are hoping for the best...I know you will make a great decision for your sweet little girl. Thinking of y'all
ReplyDeletepraying for you. I've been checking in and praying since last year after Abby asked for prayers for you. I'm her adopted aunt and I went to school with Sally and Joe
ReplyDeleteHi. I sure do miss running into you & Sammy in the halls at IDC ... our schedules must be opposite this year. I wanted to pass along our support for you guys. You definitely know best, no matter how many degrees a Dr has. It's hard sometimes for sure but trust your mommy instincts ... they never fail.
ReplyDeleteI think any neurologist (or dr of any kind) worth his salt should welcome a second opinion or third or however many it takes. A doc should be a part of your arsenal, your team. I don't know who you're seeing at CMH right now. We've seen LePichon a of couple times and have been happy with him; but really, we're just 'maintaining' Mira's status quo right now. When we were more actively problem solving we saw Dr Graf (who's since left unfortunately). We also saw Abdelmoity (sp?) but can't say we were blown away by him.
We took Mira to see Dr Christine Gurnett at St Louis Children's Hosp. We really liked her, felt very well listened to & heard and had a very overall positive experience. She didn't have any kind of "magic bullet" for our girl but I chalk that up to Mira's situation as being so *fabulously* vague and complex (not a lack of expertise on her part).
I know this comment is getting way too long and rambling, sorry. If you ever want to chat or grab a coffee anytime, just email me. Can you see my email via my profile? If not, I'm sure Amy can give you my info. :)
Just wanted you to know we're thinking of you and praying for you & your girl & your whole family.
Best regards,
Sarah B
Melissa,
ReplyDeleteSuperMom is the word that comes to mind when I think of you. You fulfill your school responsiblilities, your role as mom, with 2 kids in competetitive sports, scouts, etc. (SuperMom!). You not only attend church, but fully participate by volunteering (SuperMom!). You also maintain a house, inside and out (SuperMom!). All of this on your own. And then add in sweet Sammy, and all that she requires. Regular checkups, dentist appointmets, etc. would be a lot for a single parent, but the demands of Sammys needs require far more. Your patience with her, and commitment to her complete wellbeing is remarkable (SuperMom!). I am in awe of your strength and perserverence. All that being said, I hope you know there are many around to help with the big and little things. If only you would ask. Continued prayers for your family and the decisions that need to be made on Sammys behalf.
Sincerely,
Jackie