homburg hospital update

I took laura into see her developmental pediatrician on Friday because she started running high fevers like her sister and it looked as if Laura was having small seizures. if you have ever seen a newborn startle or felt like you were falling while sleeping this is what it looked and felt like as she was doing it, only lasting about 2 seconds each but at the worst of it she was doing this every two to five minutes. scary. I still don’t know if these are seizures or not, she is being monitored.

she has been doing this all night, her fever has been really high and trying to figure out what an infusion is (an iv) when I was thinking they said transfusion. it’s been a bit confusing up here. we are working on getting some additional help to help with the language barrier but no one at lrmc is answering the phones to help us get a translator…. awesome right! But it could be worse the girl sharing the room is Kurdish and at least the Dr can speak English enough to help me understand, they don’t speak Kurdish… So I will count my blessings.

They had to shave part of Laura’s head to put an IV in and take blood. I had to leave the room. Laura was pretty dehydrated from the fever and not eating like usual. I can’t handle seeing my kids in pain. So I cried in the hallway for 15 min while they were doing this.

Laura’s Dr. thinks that if she is having seizures it will strongly support the syndrome he thinks she has. My heart is breaking into what feels like a million pieces. If he is right it’s about to get a lot harder. I can’t think about that right now and I don’t want to even begin to process it. I’m going to protect my heart for a bit longer and allow God to work on it so if this is what’s happening I can handle it better. In order to really know if she has it he will have to do genetic testing which he doesn’t believe Homburg will be able to do during our stay, but the MRI and EEG will be very helpful in connecting dots.

Right now, I’m going to shower, cuddle with Charlie and catch up on some sleep so tomorrow I can be with Laura refreshed.

 

And Thank GOD for a husband who saw me at the hospital and said “go home, I’ve got this” with so much compassion in his eyes. And for some amazing friends offering meals, prayers and love. I love you all. Thank you. This isn’t easy, you are making it easier.

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One thought on “homburg hospital update

  1. Allen and Stephanie I can’t imagine the hardship of emotions you are having to deal with during this scary, uncertain time. I know we all, your family and friends are praying and hoping you get some answers soon. How frustrating that must be.
    Regardless of the outcome acceptance is one of the important things to have. If the outcome is long term or life, accepting makes that road a lot easier to follow. You both are strong, loving parents and getting stronger with each passing day. Look into that precious face and realize she is going through this struggle and fighting all the way. When I see that happy, smiling face she knows she can make it through whatever comes her way. Smile with her and her knowing you two got this will make both your struggles subside a bit. She needs smiles right now not fear around her. For Charlie Bear too, she knows something and not able to understand it all at her young age, she needs smiles and reassurance that her baby sister is going to be OK, that you all are going to OK.

    Like

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