We are trying new moves that our physical therapist has taught us. They are Very inspired by yoga. Lila's downward dog is adorable.
Saturday, March 29, 2014
Friday, March 28, 2014
Don't you wish you could freeze time just once and a while? Tonight ruby was giving night night kisses to Lila and she was super excited and laughing hysterically, which in turn made Lila smile. I couldn't catch the photo in time but it was adorable.
Thursday, March 27, 2014
Monday, March 24, 2014
Friday, March 21, 2014
I went to Little Charlee Nielsons viewing yesterday. I have never gone to the viewing of a little child's before. To walk in and see that little tiny casket was quite overwhelming. I burst into tears as soon I saw it. I tried not to think about my little lila but it was impossible not to wonder what it's going to be like when my baby has to leave me. We're getting the point where either way life goes is devastating. Having Lila pass and not be with me every day is going to be absolutely horrible. But at the same time I can't imagine having her stay and watch her struggle and seize and get bigger to the point where I can't take care of her. I think I would just curl up and die if I had to put her in a home. Either future scares me so much. It's awful to know that there's no alternative for us there's only heartache in our future. But watching Catrina at the funeral I was so impressed by how strong she was and I knew that our heavenly father was lifting her up. I hope that when the time comes I could be that strong. I hope that I will get help from the Angels. I am so glad that little Charlee is dancing and running this evening. Free from a diseased and exhausted little body.
Sunday, March 16, 2014
Saturday, March 15, 2014
My friend Catrina's little charlee passed away this morning. Catrina and I met at special needs support group and were the only ones with known to be terminal (some kids may pass away from their seizures someday so it's hard to say they are not terminal) illnesses. To be honest I never thought Lila would outlive her little girl. When I met her she could still sit up, eat and smile. They had just gone to Disney world with make a wish. She seemed far healthier than Lila in so many ways. It was quite the shock that she declined so quickly and finally left her family this morning. It goes to show that we don't know what is in store and that it's all in His hands and timing. I wish for peace at this time for Catrina and her family. It just breaks my heart.
Friday, March 14, 2014
Thursday, March 13, 2014
Tuesday, March 11, 2014
Happy nine year anniversary to this amazing man. We have been through so much and yet everyday he makes me laugh. I am so lucky. He promised me nine years ago at our wedding that I would feel loved every single day. And I do. He is my biggest gift.
I think what I am most proud of after nine years is the love that is in our home. It truly is an oasis and a place of refuge.
Thursday, March 6, 2014
Seizures stink. I loathe them. After sharing a room with my Lila the past two months I have realized how much she is really up in the night seizing and then unable to fall back asleep. She never sleeps, the poor girl. I can't believe she can actually still give me smiles during the day. I would be a grumpy mess.
A couple a nights ago Lila was having seizure after seizure so we decided to use out emergency stash of liquid Valium. It's suppose to help seizures stay away for up to eight hours. The risk is your child could get so relaxed they stop breathing. Lila did fine and had the best nights sleep in a while. Just broke my heart. If only we could find something to help these seizures!!! Let me tell you that watching your child seize and not being able to do anything is the worst feeling in the world. I have never felt so desperate. I hate seizures.
Tuesday, March 4, 2014
Monday, March 3, 2014
Ruby is making me nervous. She is not the best roller. She'll do it but it takes some persuading. I have been stressing about it quite honestly. But Lila's therapists (handy to have a few coming to the house) are not worried. They think that it's more due to the helmet. They think she will be just fine. Hard words to believe in for a special needs mama. In the meantime she has found a way to get around. She flops her legs and kicks and scoots across the floor. Kinda like an upside down frog. It's pretty cute.
Pretty happy with herself.
I love watching this little relationship develop.
I had to make funny noises for quite a while to get this girl to look. She loves her sister. Most noises by ruby these days are mamamamamama but I swear that when we play with Lila they turn to lalalalala.
Ruby refuses to lay back in the tub anymore. She is a sitting type if girl these days. It's a miracle. Honestly. Functioning bodies are truly miraculous.