Raygen had a great OT Appt. Best one yet!
She played with all the food. She didn't eat any, but just that she would play was a big step for her.
She loved the lid to a sippy cup, lol! She has the greatest personality.
I was so proud of her. She showed her therapist what a big girl is she becoming. She sat up the whole time and laughed and played. It was a good appointment. We won't go back till November. We will just keep working with Raygen at home on oral therapy and see if some how, some way we can get her to eat. We love you girl!!!
We continue to thank you all for your continued support and prayers. He hears you and so do we, thank you. Thank you to the ones who have dropped everything and drove hours to come see Addison during this time of need. I have to thank Jennifer Nichols and her husband Jason, Addison's cardiac nurse in GJ who literally dropped everything to drive here and see Addi. I have to thank my best friend Lacey Wood who has literally put her life on hold to watch Savannah. To make sure Savannah can continue living in the only home she knows continue going to school, gymnastics and keep routine all while bringing her to Denver on the weekends. We are so blessed by all the support and help. Words can't express how thankful we are to be surround by such a compassionate community and loved ones, thank you. I truly believe in the power of prayer and Addison is proving that in every step of the way. In every sense of the word, thank you everyone.
Addison continues to be on a lot of support and has had no change in her right ventricle function. Failed Fontan, severe right ventricle function, failed fontan, failed fontan, failed fontan. These words continue to be the start of daily rounds. How did we get here? It happened so fast. She was so strong, she had so much energy going into Fontan, perfect candidate, what happened?? HLHS happened, no rhyme or reason.
I woke up in the early hours at Addison's bedside with IV pumps beeping, sat machine alarming, not knowing what day it was. However, I knew we were now 12 days and waiting. I woke up, Addison woke up and that concludes a good day. 2 weekends ago we didn't know if Addison would make it through the weekend. We are now safe to say we are hopeful she will make it to transplant. The golden question we all ask is how long can Addison's heart last until a donor comes through? Could be days could be 2 months. She declined so quickly, her team is really not sure. Again, it never has been up to us and certainly was not our plan. One I am struggling with. At this hour, Addi is sill on .75 IV drip of milrinone, 2 liters of oxygen, IV lipids and TPN. She continues to be on digoxin, sidenafil, amniodrirone, aldactone and potassium supplements. She is off epi and tolerating it well. We continue to be in CICU and there has not been talk of going to the step down unit at this point to wait for her gift. We can always hope. As of now Addi is having a good day. She is sitting up, talking and doing crafts. She even went on a wagon ride. We have good days and bad days. She tires very easily, vomits and sleeps a lot. Typical course for heart failure.
As of now we stay hopeful in His plan and continue to pray for a miracle. We pray for the parents who will choose to save our daughters life in a unimaginable time. We pray.
Everyone continues to ask what we need, how can they help. And I must say, we are SOOO grateful. What we need right now, as of today we need 2 things. We need continued prayer. We pray Addison receives her heart and the heart is a perfect match for her body, perfectly and wonderfully made for her. Lastly, we ask that you, your friends and family have a conversation. A tough conversation. Just as sitting down and making a Will is never easy, we ask you have a conversation about organ donation. Are you a donor? Is your spouse, your best friend, your parents? God forbid something happens to your child, your grandchildren, would you donate their organs? Where do you stand? In the midst of the unthinkable, what would you do? These topics are never talked about. Who wants to think about it, surely not us. But being on this side, being the parents of the dying child, we pray you do have that conversation. Many times, the conversation never happens and it is to late. The organ dies and it is not viable to give the gift of life in time. Have the conversation. Regardless of how you feel about it. Let your loved ones, your friends, your family, tell someone where you stand. If the unimaginable happens to you, to your child, what then? This is what we ask, have a conversation. Thats all....
As of now we wait. We are thankful for the day. We are thankful for the good moments with Addison, pray the bad pass quickly, but thankful for every breath. Everyday we wait, everyday Addison is stable, we are thankful. Everyday, every hour that we must wait that is just one more day, one more precious hour the donor family has with their child. We will be patient and wait. We will continue to be forever faithful in His plan.
Much love to all and again thank you so much for everything.
