Time flies when you're having fun

WOW 2017 Huh?? It is hard to believe it has been 4 1/2 years since I've visited this little space of mine. So much has changed for our family since I last checked in. We have expanded our family and now have 4 amazing young girls in our little crew. McKayli was born in March of 2013 just 19 months younger than Kylie and to say having them that close in age while Kylie went through everything she has gone through would be an understatement but apparently we are brave or have completely lost our shit because we did it again and added Olivia to our brood in November of 2016. I have wanted to revisit this space for so long but life got away from me but after much encouragement and quite a few people asking I am back and hoping to give more dedication to sharing bits and pieces of life as a Longfellow and let me tell you with 4 girls in the house three of which are 5 and under and a teenager there is never a dull moment. I hope to be able to fill in some of the blanks of what the last four years have been like for us as well as what Kylie's journey has been like. I can't remember what our count was for hospitalizations and surgeries at last post but as of now we are at about 27 hospitalizations and she just had her 10th surgery in November. She started Kindergarten this year......SERIOUSLY?? How is our baby girl who has been through so much grown into this amazing little Kindergartner? She learned to write her own name right before Christmas break and is so in love with learning and growing and catching up with all the other kids in her class. You know like normal kid stuff.

This is our little miracle baby now. She's amazing and so strong and most importantly full of life.

I think I will start to take this blog in a little different direction and just open up our door and share some tid bits of what life is like for us now. Like starting out 2017 with Mac having croup because that's just how we roll. I look forward to being back in this space and the joy I get out of sharing the ups, downs, and in between. It may not always be the prettiest but it's our crazy mess and I wouldn't change it for anything.
   

Well here we are.......We have been home for a few weeks now. We were able to bring Ky home a few hours short of 15 days in the hospital. She has had a terrible recovery and it has been a very trying time for our family. She is not tolerating the volume amount needed to grow and thrive so they have tried going up on calories per feed and unfortunately that is proving unsuccessful as well. On our last few days at the hospital one of the doctors that had only seen Ky twice suggested that she should be seeing a genetic specialist and now weeks later all our team agrees and is on board and we leave July 4th for Seattle children's hospital. We   will be meeting with biochemical genetics, a nutritionist, a G.I., and will be making a return trip to meet with medical genetics. This has really thrown us all for a loop as we thought going in for her fundo/ nissen that we were kind of at the end and she was going to be able to start progressing and thriving and unfortunately reality has been the complete opposite. She has completely stopped eating orally and is not growing well and has dropped drastically on the growth charts. Her doctor is saying she now has what's called "dumping syndrome" which is causing another set of problems. Her little body is very depleted and weak and in attempt to try and get her sleeping she was given a medication which was supposed to help her get some good sleep and start to heal her body. The first night we gave it to her the following morning she had a seizure. That really was a tough experience for both me and Steven to have to go through with her and be so helpless. She was very sleepy the next day but she seems to not be having any effects from it. We are praying for some answers in  Seattle that someone can finally figure out why our little girl is struggling so bad.  She has always been such a happy, fun loving little  thing and I just want that back. This is a broad breakdown on what the last few weeks have been like for us but it is very discouraging when the doctors keep saying she is unique and complex but not really coming up with solutions but all agreeing there is something they are missing. She again through it all has stayed as string as she can and still has that sweet little smile that can light up a whole room. Now how to give her a shot at a normal life. I just really want to send out love and blessing to all the amazing friends and family who have not only stood by us through this whole experience but have prayed diligently for us, arranged meals for my family while we were in the hospital and brought meals, to those who came and sat and talked and  visited with me so I could just talk. I usually send out thank you cards or send messages or at the very least I respond to messages but lately I haven't been able to bring myself to focus on anything else but my girls. To all of you who have been there and been that person and then some I am so grateful from the bottom of my heart to all of you and don't give up on me because even though I haven't been good with responding all the love and unconditional support is what is helping me through and I love everyone god has been generous enough to give me in my life. I have hope that this isn't as good as it gets and this will one day be a memory of a triumph.