I realized I have been avoiding making a new blog post because I want it to be the the perfect blog post. And that's probably never gonna happen. So I just need to start writing and let it go where it goes.
Our life in this house can be really crazy. We have some pretty amazing moments in this house, like drumming, singing, dancing, playing hide and seek, snuggling as a family, letting each other know how much we love and care for each other.
And we also have some scary moments. And those scary moments seem to last days sometimes when they are happening. And sometimes you can't get the them out of your head, that moment, that unbelievably terrifying moment, well it can replay in your head over and over and over again. It's hard. I try to play it off most days, I do. All of this- her care, her expenses, the daily preparations that go into her care, the phone calls to/from her 10 specialists (plus her peditrician), the information to be retained about her care and diagnoses, the constant thoughts and worries- it can be a lot. And we (and I include ALL of you; our family and friends) handle it the best we can. I say we, because what happens in our house effects all of you too. From phone calls from my husband and I crying, and needing to "talk", or needing a ride to an appointment, or you having to taking care of Addison while Reagan is in the hospital, or sending your prayers and love to my little family and "our little fighter".
Whatever it is you have done, you have become part of our family, and you live in our house with us. So it's time for me to start sharing a little bit more about Reagan's daily life with all of you. Its so you know and you understand that if I don't always answer my phone, emails, texts, Facebook messages- that I heard you, we heard you- we thank you- and you are always in our thoughts and prayers too. We love you and thank you for EVERYTHING, BIG and small.
So family to family I wanna share with you how I worry about Reagan 24/7. Sometimes I may seem like I am somewhere else, It may seem like I am on another planet, it's probably cause I am. There is no doubt I am thinking of what appointment or testing is coming up, the preparations for the rest of the day and the days to come, the symptoms she is experiencing, the doctors I need to call, and let's not for get about the awful task of being patient while waiting for test results come in! My mind is clouded at times. I feel overwhelmed. My husband feels overwhelmed. Addison worries about her little sister. Our extened family worries too. It's hard. But together, all of us, we stick together we pull thru.
Some of the things I am anxious about is some of her up coming testing and new specialist appointments. And here is why...
She saw genetics recently. Her geneticist says she has seen a million babies like Reagan before. And she is confident that her genetic testing is going to come up with positive results. She suspects connective tissues disease. She said it doesn't fit all her diagnoses but most, she said she could have two genetic syndromes, and we won't know til the testing comes back. And hopefully it will let us know what the long term is going to loom like for her, what her care will consist of.
She also wanted Reagan to see an ophthalmologist because her peditrician said it kinda looks like she has a "lazy eye", and apparently with some types of connective tissues disease you can have eye problems. Then she was concerned with the fact that Reagan has had so many upper respiratory infections since birth and is now on her 3rd g tube infection! She she decided that she should go see an allergist/ immunologist. She also ran some lab work to check her immune levels and they were pretty low. Her geneticist is aware of those results and is deferring her to the allergist/ immunologist for further work up. The abdominal ultrasound her geneticist ordered was normal, which is awesome news! Her geneticist said that we are gonna get a lot of normal results back, but we are also gonna get some abnormal results.
It just makes me nervous, we have been looking for answers for 7 1/2 months, I NEED to know what causing all her issues, but I am terrified of what is gong to show up. We are expecting a call from her next week to discuss some results.
I mentioned before that she is on her 3rd G tube infection and she is now on her 11th day of antibiotics out of 21 days. She has to be on it until she can see her GI doctor on 10/30. Needless to say it gives her bad stomach aches, and since starting it she has lost 2 oz. I feel so bad for her. But she is so tough, she sticks it out and kicks butt. I am so proud of her.
So those are the big things in addition to the little things that I am always worrying about. Now you know. So I am gonna wrap this up. It's not a perfect blog post. But I was able to communicate to all of you reading this. So thank you! Thanks for reading, thanks for caring, thanks for your patients! As always, I will post when I can. And hopefully next time I don't wait 2 months! :-)
Love,
Reagan's Mom and family!
