Few more updates

Updates:
I spoke with a nurse yesterday at the neuromuscular department in St Louis. We have an appointment! Although I am trying really, really hard not to be disappointed. It is scheduled for January 16 at 8am. Over a month away. Everyday I try to be positive, but if Logan catches a cold…I’m not sure he will be here in a month. Let alone be able to travel well. I know we are not the only parents in the world with a sick child, but I really did want to climb through the phone to try to make them understand. When I asked them what happens if he isn’t strong enough or healthy enough to travel. The nurse really didn’t have an answer and just kept saying “I was told to give you first available” when the nurse yesterday said ASAP. Ugh.

So as it stands we have a pulmonary appointment Jan 9 and neuromuscular appointment on Jan 16. We are on a cancellation list, however, it would have to be a next day cancellation since we live 4+ hours away.

Logan had a wonderful five month birthday party! He tried his wonderful cupcake from Stacey’s Sweets in Ozark, MO. If you need a cake or cupcakes, you need to see this lady! She is incredible!!! I will post a picture of the cupcakes soon!

Some have asked privately or on my birth board how I keep up with updating everything. Honestly…its not that hard thanks to apps and nap time :). I am getting better about not having to be in the room while he is napping, but most of the time I stay. I’m filling out tons of applications, doing more research, and trying to prepare myself for whatever the next step is. Currently we are in the “numb” phase of grieving. I really don’t feel much during the daytime, which is when I normally update. This is also stress relieving. I can post memories about our baby boy and one day when I want to reminisce, I can come here 🙂

4 thoughts on “Few more updates

  1. I am also on your birth board and had seen the questions about your ability to update. I believe you have to do what’s therapeutic for you. You seem to be doing an amazing job at making these days as joyous and comfortable for Logan, while staying strong for the rest of your family. My thoughts and prayers are with you and your beautiful family.

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  2. Tia I can’t even begin to imagine what you and Brett are going through. You are so strong! Give that baby a kiss for me. He is adorable. You and your family are in my prayers daily. I pray that God heals Logan and that a miracle will happen for him. I also pray for Lucas, big brother, I pray that God will continue to comfort him and help him to know that everything God is in control. And for you and Brett…I pray for peace and strength…you are both wonderful parents…keep God the center of your lives and hold strong for your baby boy like you have been doing. I love you so much Tia…God please do something amazing for this family!

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  3. I have thought about you and your LO so much since hearing your story on BBC. Even though I often cry whenever I read your posts I have to continue to read to offer my thoughts and prayers. I just can’t find the right words but please know you are in my thoughts. Logan is a beautiful baby and his face often flashes in my mind. Lots of thoughts and lots of prayers to you and to your family!

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