I'd like to share a very special song and video done by a friend. She wrote this for her son Levi and was gracious to include all of us special needs friends photos. Please take a listen and share share share. #fragileXsyndrome #autism #specialneeds
Friday, February 24, 2017
Bs follow up visit at his Pediatrician this morning. It went very well. B looks good and sounds good she said. We also weighed him and guess what? He was 47 pounds. She let us know that visit before last B was 53 pounds and so he has lost weight prior to being sick. This is because we have been through so many stomach issues in the past 6 months. I had just gotten him straightened out and then this happened. So even though he was 48 pounds at admission to the hospital that one pound weight loss seemed greater. Just enough to make him look too thin since he had lost due to stomach issues and diet changes. With that said I am still going to work on fattening up B to get him back up to his 53 pounds and maybe higher. We will see what his height to weight ratio should be to be healthy. It's a constant ever changing thing raising this kiddo. But we are thankful the weight issue isn't as great as we had thought. It's a huge relief actually. I also want to say how proud we are of Bs cooperativeness through this last hospital stay. He also did great for Dr W this morning. He did battle the nurses some over his mask changes and especially over the IV. Enough so that he had to have a mild sedative. But he was off that sedative just a few days into our stay. They said they couldn't believe how strong he is when he needed to be held down. He may be little but he can put up a good fight if he feels he needs to. At least I know he can defend himself in some way. Hoping the good report and a few more days home will be all he needs to be back to his normal.
Wednesday, February 22, 2017
I know a lot of you think I am a rock in a wind storm. I must say I have my moments of defeat. This hospital stay was one both Stephen and I anticipated. It was just a matter of time. We have been through so many hurdles and struggles that all last week we were on auto pilot. We have learned to put our emotions aside so that we can weather the storm. As parents of a medically fragile child you develop these coping skills that may make you seem comfortable, focused and unbreakable. Yet we are not. When Stephen picked us up from the hospital a huge weight was lifted off my shoulders and my emotions started to surface. But in my not so comfortable state I push down the lump in my throats and the fountain of tears. Both our boys are our world. They are what keep us going. I keep my eyes and heart fixed on the mission of making all things good for Braden. As well as Grayson. I think we just run on keeping them healthy and happy and when things get rough we focus on what we can do to make things our normal again. These times remind us of what's truley important. I know many blogs I follow and many parents with kids who have autism think it's tough and even hate it. But we have lost a child and we have two lovely boys and despite the struggles that autism brings it's nothing compared to loss and the fear of loss. Not in our world. Not ever and that doesn't mean I don't understand others feelings. But I can't always sympathize with it.
For those that don't know. We were able to go home yesterday afternoon. Braden is doing well this morning and had a good night. We are both tired and taking it easy today. But we are so happy to be home. Braden has his stability back. He fell asleep early last night and got up early. He wasn't able to get a bath so he will get cleaned up today. Thanks for the continued prayers. He has lost 11 pounds from this illness and he didn't weigh a lot to begin with. He was 48 pounds and now he is 37. So we still have some work to do before he is healthy again.
Tuesday, February 21, 2017
Braden had a good night and finally got off his oxygen. He he doing well. He ate all of his bacon and cheese omelet this morning. He is drinking much better this morning and his color looks good. They will observe him till after lunch and if all goes well we can go home this afternoon. Needless to say we are more than ready. I miss my family and cannot wait to hug on lil G. I know B is ready to be home too. He had some emotional moments yesterday evening. Breaks my heart he has to go through it.
Monday, February 20, 2017
My apologies for the delay this morning. Braden moved to the regular floor on 1 liter oxygen yesterday and had a great night. He is eating and moving around more. However, he is still unable to maintain above 92 without oxygen. He is on less than a liter and we think he is just weak. He needs rest and food and one more night and hopefully by end of day he will be off oxygen and we will know if he can handle sleeping without it too. As much as we want to go home we can't do a repeat. It would be harder on all of us than if we just stay and make sure he is good. We will also keep him home for the week and then decide when he can go back to school.
Sunday, February 19, 2017
Braden did great last night. We finally think he has turned the corner. He was more himself yesterday. He willingly sat up for long periods of time in bed and he even ate some applesauce. Hoping by late afternoon evening he will be doing well enough to get out of the ICU. Thank you all for continuing to keepBraden in your thoughts and prayers.
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- I am a stay at home Mommy to two beautiful boys ages 8 and 6. I am also Mommy to one little girl who blessed us with 13 days of life. Our road may be crazy and full of surprises but in this household Autism exist but doesn't define who my children are or will become. I am also a blogger. I love to write about our families crazy journey through life. We love, laugh and suffer sometimes but we stick together and always seem to keep growing and going.