We noticed yesterday that a couple little lashes are forming on her "new" eyelids - isn't that amazing?Brenna had her follow-up opthamology appointment yesterday, and it went well. Dr. Su advised us to put in lubricating drops more often since she still can't close her eyes all the way when she's sleeping, and there were some dry spots on her lower eyes.
Brenna has now been home for more than a week. When I think about all of the weeks ahead that will be filled with this crazy new routine, I feel overwhelmed and exhausted....so I am just going to focus on the fact that we had one whole successful week and keep taking each day as it comes!We have been so blessed to have some help from family and friends who are taking time out of their days to help me with mine. The first day Evan returned to work, I ended up sitting and playing Play-Doh with Connor and crying. So I decided right then that even though I am disappointed that I am in such a "needy" position now after being so used to having my household running like clockwork, I am asking for help more!
In other news, Connor got what appears to have been a 24-hour flu yesterday and was throwing up the whole day. It wasn't pretty, and it wasn't fun to deal with on top of taking care of Brenna and praying that she (and us!) didn't get sick too. So far, so good.
Brenna looks so sweet - glad she is getting along so well. Hope Connor is feeling better. So glad that you have friends and family available during the day to help you. Even in the best of circumstances, having 2 little ones can be overwhelming so don't feel that your emotions are unjustified. You are exhausted too, and that doesn't help. Take it a day at a time (minute at a time if you have too). Hope Evan's first days back to work have gone well. All of you continue to be in our prayers.
ReplyDeleteLori, Mike, Megan and Garrett Downing
She is precious. She is so much more than the skin she is in, and you've done such a beautiful job introducing us to her sweet little self and letting us see that. I think Brennal is just amazing and I thank you for letting us meet her. And YAY for eyelashes!
ReplyDeleteThey say that God doesn't give us more than we can handle - but I know sometimes that is hard to believe. You are entitled to be "needy" with all you have been through over the past few weeks. I so enjoy your posts and following Brenna's journey. You are doing a wonderful job with being a family of 4!
ReplyDeleteHi! I am thinking of your family and sending as many positive thoughts as I can! In one of your earlier posts, you mentioned thinking of Brenna as a butterfly - it made me thinking of another blog I read - www.patriceandmattwilliams.blogspot.com. Their little boy, Jonah, has an extremely rare skin disorder as well (EB). While your situations are different, I know Patrice would be able to relate to your routine and feeling a little "needy." While I have never met her, she seems gracious and kind and if you need to reach out to another family who knows all about baths, bandages, aquaphor and more, she may be able to provide moral support. All the best to you, A
ReplyDeleteShe is such a sweet little girl! I can't imagine your situation, but I know that God is going to bless y'all so richly (and clearly already has). Thank you for sharing your heart with us. We can see what an incredible work He is doing in her life, and it is amazing!
ReplyDeleteAllyson
http://cupcakescandycanes.blogspot.com
Prayers are headed your way, family -- all day and all night! Take it a day at a time and rest yourself physically emotionally and spiritually whenever you get the chance. It'll all be ok!
ReplyDeleteBrenna looks beautiful with her new eyelashes! Also, your son is adorable and I hope he feels better soon and that the rest of your family is spared from the flu. When my son was sick when he was first born (he was born with a rare genetic disease that affected his intestines) my husband and I decided early on that we could only deal with making decisions and getting through the present day- one day at a time. Our situations are very different- but I hope that you find moments of peace in establishing your routine as we both have. Many blessings to you. Danielle Ralston (ps my email is drralston@gmail.com if you ever need to vent. I know I don't know you- although I have been reading your blog often!- but us momma's need to stick together!)
ReplyDeleteYay Brenna! Pretty kitten.
ReplyDeleteAnd Connor looks pretty damn cute for being so sick!
Wish you were closer so I could come help out.
precious! love that picture of Evan snuggling with her :) have you heard of the Chronos/Kairos time theory? i think it may help you in times when you feel overwhelmed and exhausted. this is the original blog post: http://thehappiestmom.com/2012/01/on-carpe-diem-motherhood-chronos-and-kairos-time-and-the-old-lady-at-the-store/ and this is another on the subject from another mom with a child with special medical needs: http://teamwhitaker.org/2012/01/top-ten-kairos/
ReplyDeleteI'm new to your blog! Your kids are precious! Brenna is looking better and better!! She is such a sweet little thing. OK, so I was not a mom that wanted my kids to watch alot of TV, but I have found some great educational shows. My favorite is Leap Frog videos! The Letter Factory is about 30 minutes long and taught my son the alpahbet and sounds! PRICELESS when you need some time to just sit and stare at the wall while Brenna sleeps!!!
ReplyDeleteLove from TX,
Carrie
Gorgeous photos of a beautiful family! Praying each day gets a little easier! Hope Connor is feeling better and you all stay healthy!
ReplyDeleteOur congregation at Oakford was glad to hear last Sunday in worship that Brenna made it home from the hospital. This Sunday I am preaching about the healing miracles of Jesus, and I am going to talk about modern may "miracles" thanks to the creative minds that God gives us that have advanced modern medicine. One example I will use is when Dr. Su created eyelashes for Brenna. I am still amazed at that! Now to know that she is growing eyelashes is just icing on the cake! Who would have thought that would happen!
ReplyDeleteOn a separate note, I am so glad to hear that you are asking for help with your daily schedule and that people are responding. God bless you and your family.
Brenna is so beautiful! YIPPEE to eyelashes! Your family will be in our prayers. You seem like amazing parents blessed with an amazing daughter (and son, of course!).
ReplyDeleteCourtney, if you need me to help take care of Brenna so you can do other things or just get a break I would be happy to have you teach me the treatments and feeding routines she needs. I am retired so I can help as needed. She looks great! Leslie Frederick
ReplyDeleteCongrats on "surviving" the first week home!! While I can't relate to a lot of what you are going through right now....some things came to mind. Someone above mentioned Jonah's blog...not sure if you've ever checked out that blog or not and I know Brenna and Jonah have different conditions but she (Jonah's mom) might be able to give some good/realistic advice to you!
ReplyDeleteSeriously, take help that is offered and don't be afraid to ask! Most people would love to help but just don't know exactly how!?! That's what friends & family are for!! And, I'm sure your church family would love to help in any way possible!!!
Prayers from NY :)
Brenna is precious. I'm so glad that your first week at home went so well and so glad that nobody else got the 24 hour bug! Continuing to have you guys in my thoughts and prayers!
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