Okay so it has been exactly 7 days since we got the news about Rylan. We seem to be managing fairly well, but it still has not been easy. Chris copes by running and putting flow charts together so we can write down all her glucose levels as well as everything that goes in her tiny body. He has even already figured out the calculation to change the insulin if she decides to have more carbs. It is still over my head. I am not sure how I cope except maybe to try figure out meals. Right now we are both exhausted. We still prick her about 5-6 times a day and one being at 2 am. One of her shots she has to get at 7 am so regardless of what day it is, we must wake her up, check her blood and then give her shot. This morning she got really frustrated, but probably because she was still asleep. She still seems to be doing fairly well, but I think things might get more difficult. Today Cohen said he wanted apple juice and Rylan said no because it was not fair to have to watch him drink something she cannot. I made some yummy crystal light and everyone seemed okay.
Yesterday, Chris, Rylan, and I went up to her school to meet the nurse and talk to her teacher. The meeting went really well. The nurse, her teacher, and the counselor were all there and were so supportive about how to help Rylan. The nurse is super sweet and seems very knowledge about type 1 diabetes. I really like Mrs. Vaughn(her teacher) as well. She is ready to help. Rylan was super excited about seeing her classmates so we got to go down and see them. It was so funny because as soon as we turned the corner to the classroom, all the kids starting screaming, Rylan!! It was like Rylan was famous! I know that made Rylan feel special. We sat in the class with the nurse and explained together why Rylan was in the hospital and how her life is a little different now. It went really well and the kids asked good questions. I think it helped Rylan feel better. We even went back for the Valentines Party and Rylan brought her sugarfree jello. It went fairly well but at the end I think Rylan was a little sad she could not partake in the sweets. They had pizza, dipped pretzel sticks in frosting, and made jellybean wands as well got their box filled with candy. Before we left we took some of Rylan's candy to the nurse's station to use for her low sugar times when she needs some. Rylan kept asking can I have this or this? I knew she was sad. Later that day we talked to the diabetic nurse and the nurse said she could have some with dinner so she got to have a fruit roll-up with dinner. She was excited.
So Monday is the day, we will start school and begin to live a normal life the best we can. I have to be a huge planner which overwhelms me right now, but I think we can do it. So far I have gone to the grocery almost everyday and will continue to go. We find that all the kids like the new stuff I buy for Rylan, so we run out quite frequently. We initially thought we could just let Rylan have the special food, but are finding it is best for everyone to beable to have our new food choices. Whatever I make for Rylan's school lunch will be the same for Avery. I think it will cause us to be healther. In fact for dinner tonight, we had a rosterie chicken, rice, and green beans. I found myself measuring everyone's food and Avery asked why are you measuring everyone's food. I just thought it would be good!
Friday, February 10, 2012
Tuesday, February 7, 2012
We are going home!
So after being in hospital for 4 days, we have decided to try this new life with Rylan on our own. Chris feels it is time to take off our training wheels and go home. Rylan is also eager to go home so she can see Grand B. We have been trained on how to give insulin, how to log everything in a chart (Chris already made an excel chart), and what to do when her sugar gets high and too low. We actually had that experience today after the class. Rylan had fallen asleep during it and had not eaten in 5 hours...anyways we got back to the room, we checked her sugar level and it was at 45!!! We want her levels to not go below 70 and not above 150. We immediately gave her a box of orange juice, gave her lunch, checked her levels 20 mins later and it shot up to 209. Then we gave her some insulin.
She is good now and a life specialist came by and talked to her about it. Rylan did really good and said she understood why she had to get her blood checked as well as take insulin. She said her body does not make insulin anymore. We are glad to hear she is starting to understand it. She just told me she wants us to go to her class and talk about it and she said even I could demonstrate how we measure her blood! We are so proud of her!!! We want her to be comfortable with her illness and to be able to talk about it freely and openly and not to be ashamed of it! Our kids never cease to amaze us!! We are blessed with so many people in our lives and are so thankful to such wonderful friends and family! I often still have some tears that I shed and feel overwhelmed with all that is to be done but that is expected. Now I have blood to check, shots to give, and meals to prepare! Right now they have told us to check her blood in the morning, lunch, dinner, before bed, and at 2 am in the morning. We will give her insulin right now for 3 times a day. Before breakfast, lunch, and dinner. We will then follow up with the doctor on Feb 27. So please pray we can get a routine down. I think Chris feels better than I do, but it might be that I just wear my emotions on my sleeve.
We have so appreciated every ones emails, comments on FB, as well as phone calls. You guys have all been very encouraging through this life change in our life. We love and thank you all for everything! We are so blessed with such wonderful friends and family. We also thank you for all the people who came to visit us at the hospital and for everyone praying for us. We also cannot forget all the people who helped watch our kids so Chris and I could both be down at the hospital to learn about this disease. Grand B came in to be with the kids and it meant the world do us. We could not have done any of this without you guys. We needed all of it!! We love you all!
She is good now and a life specialist came by and talked to her about it. Rylan did really good and said she understood why she had to get her blood checked as well as take insulin. She said her body does not make insulin anymore. We are glad to hear she is starting to understand it. She just told me she wants us to go to her class and talk about it and she said even I could demonstrate how we measure her blood! We are so proud of her!!! We want her to be comfortable with her illness and to be able to talk about it freely and openly and not to be ashamed of it! Our kids never cease to amaze us!! We are blessed with so many people in our lives and are so thankful to such wonderful friends and family! I often still have some tears that I shed and feel overwhelmed with all that is to be done but that is expected. Now I have blood to check, shots to give, and meals to prepare! Right now they have told us to check her blood in the morning, lunch, dinner, before bed, and at 2 am in the morning. We will give her insulin right now for 3 times a day. Before breakfast, lunch, and dinner. We will then follow up with the doctor on Feb 27. So please pray we can get a routine down. I think Chris feels better than I do, but it might be that I just wear my emotions on my sleeve.
We have so appreciated every ones emails, comments on FB, as well as phone calls. You guys have all been very encouraging through this life change in our life. We love and thank you all for everything! We are so blessed with such wonderful friends and family. We also thank you for all the people who came to visit us at the hospital and for everyone praying for us. We also cannot forget all the people who helped watch our kids so Chris and I could both be down at the hospital to learn about this disease. Grand B came in to be with the kids and it meant the world do us. We could not have done any of this without you guys. We needed all of it!! We love you all!
Sunday, February 5, 2012
Rylan in the hospital
It is really hard to write this post. Right now I am in the hospital, with one of our sweet daughters, Rylan (age 6). We just got the news that she has Type 1 Diabetes. We really did not know much about Type 1 diabetes but now we have been overwhelmed with all the information. Basically it is an autoimmune disease that she has always had, but it just hadn't manifested yet. Her pancreas has stopped working properly (it usually produces insulin that breaks down glucose and makes into energy). Now the pancreas does not have insulin to secrete the glucose so the glucose running loose in the bloodstream. This results in a high sugar blood which is not good. The body also has to look for more energy somewhere so it starts going to the fat to take energy. Unfortunately there is no cure. She will now be dependent on insulin and will have to change what she eats and when she eats it. She will have to get at least 3-4 shots a day as well as have her hand pricked for blood. Some people may ask how she got it? We do not no how but we do know that she was born with it. She nor we caused it. It was something that eventually would come out.
You are probably wondering how did we get here? It only happened as results of an infection Rylan had which lead to a urine test which resulted an immediate rush to the ER at Texas Childrens hospital. When we got here, her glucose level was almost at 600 which it should be at 100. They pricked her first, but the machine could not read it because it was so high so they had to take blood. They admitted her Saturday night and said she would stay until we get her sugar level at a manageable level as well as teach us how to live with this illness. Chris and I are completely shocked as well as sadden to know that how child will have to live with this for the rest of her life. I have cried alot and seem it is hard to talk about it because I am just overcomed with emotions.
How is Rylan you may ask? She looks great and would never know she is sick. However she has no clue that when we go home things will change drastically. Right now she is excited to have people visit, bring fun gifts, and have food brought to her. I have tried talking to her about how she will be limited with what she can eat, but she really does not understand. I am at a loss of how to talk to a 6 year old about how this will last for her lifetime. It is also hard to imagine trying how to navigate through this with 3 other kids at home and two still not in school yet.
I ask for prayers and wisdom of how we get through this. Lord, give Chris and I the words to talk to Rylan as well as are other children. I pray that we will not question why her? But instead ask how God will use Rylan with this illness. I know that we are humbled and realize that we could have got worse news, but at the sametime no one wants their child to have more difficulty in their life.
How am I doing? I wish I could just pretend this was not real or just flee the whole situation but that does no good for anyone. I am just on my knees asking for God to give us strength to help Rylan. I will try to blog more about this as we learn more. I am sorry for writing so much but it allows me to feel better when I write down my thoughts. We just ask that you pray...
You are probably wondering how did we get here? It only happened as results of an infection Rylan had which lead to a urine test which resulted an immediate rush to the ER at Texas Childrens hospital. When we got here, her glucose level was almost at 600 which it should be at 100. They pricked her first, but the machine could not read it because it was so high so they had to take blood. They admitted her Saturday night and said she would stay until we get her sugar level at a manageable level as well as teach us how to live with this illness. Chris and I are completely shocked as well as sadden to know that how child will have to live with this for the rest of her life. I have cried alot and seem it is hard to talk about it because I am just overcomed with emotions.
How is Rylan you may ask? She looks great and would never know she is sick. However she has no clue that when we go home things will change drastically. Right now she is excited to have people visit, bring fun gifts, and have food brought to her. I have tried talking to her about how she will be limited with what she can eat, but she really does not understand. I am at a loss of how to talk to a 6 year old about how this will last for her lifetime. It is also hard to imagine trying how to navigate through this with 3 other kids at home and two still not in school yet.
I ask for prayers and wisdom of how we get through this. Lord, give Chris and I the words to talk to Rylan as well as are other children. I pray that we will not question why her? But instead ask how God will use Rylan with this illness. I know that we are humbled and realize that we could have got worse news, but at the sametime no one wants their child to have more difficulty in their life.
How am I doing? I wish I could just pretend this was not real or just flee the whole situation but that does no good for anyone. I am just on my knees asking for God to give us strength to help Rylan. I will try to blog more about this as we learn more. I am sorry for writing so much but it allows me to feel better when I write down my thoughts. We just ask that you pray...
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