Rock on!

Sometimes as parents we often forget our role in our children's lives. We don't get to see the daily impact we have on our children. Yesterday.... my daughter took my breath away. Kirstynn was in the Model Competition at the Paulding County fair. I was unsure of the set up, so we went early this way she could practice. Well to our surprise they were doing the project modeling so there was no practice time. Kirstynn went up on stage and rocked it, but as fate would have it she did not win. My heart broke for her, As a mom we always want to see our children win. She came off stage and was a bit upset. We went outside I let her shed a couple of tears and explained to her.... Pick your self back up, its not always about winning. Lets be happy for the girl who did win, and next year you can come back and rock it again. She agreed, and we went back into watch the rest of the children finish up. After is was all done, we walked out. I saw it right then. Kirstynn was the only child I saw do this at any point. She made us wait and walked up to the little girl who had won and said Congratulation's! She walked back to use, and said " I am happy for her, lets go ride some rides" At that moment my heart did not break no more. I had the winner, to bad it took a 7 year old to remind me of that. I had the only child out of all of them who showed happiness for another child winning. It takes so much more of a person to have the actions speak louder than words! Thank you Kirstynn! You rocked the stage, and you will get to rock it again next year.

: D

 We received Gabby's new pulse ox machine today, got her all hooked up tonight, and this is what it reads. She is on 1 Lrt of oxygen at nights, and we dropped her Keppra down to 1 ml twice a day. Its good to see these numbers.

 Dillon is here! : D Today he got the roller blades and and the kids had some fun! The girls are so happy to have him here. They have missed him! Lol, they did a train down the side walk. Glad to have my family all together!

At Least the decrease was caught.

Well we got our results of our "4" (It was only a 2) hour pulse ox test yesterday. It was a sad moment for us...... Gabby does sleep with me and since the Kepra was added I noticed Gabby's respiratory has decreased at nights. I called our pulmonologist and he felt we needed to have a 4 hours pulse ox test down immediately to be on the safe side.  i sat there from 1 am to 3 am a wreck. Around 3, I decided it was in my best interest to turn it off. When I first placed it on, I took it back off due to her pulse ox at 80. I thought it was broke. After seeing the green light flashing I knew it was right. My heart sunk, I sat there for almost two hours watching it. 80,81,79,81,78,83.... It never rose above 84 at any point. I was unable to sleep. My fear had been confirmed. I cried for a bit, and then pulled it off. They had stated if it was under 88 for more than one minute she would need to be placed on oxygen at nights for her own safety.

I called the company the next morning to talk about what I had seen. I stated I had not left it on for the 4 hours due to the numbers being so low and my inability to sleep knowing it was that low. They said with numbers like that UPS would be there with in the next hour to pick it up and have it shipped to an independent company to be downloaded and read. With in 12 hours I got that phone call stating they would be at my house with the afternoon to drop off her new equipment.

I cant say enough good things about our home heath care company. They sent out a delivery man, who spent over an hour explaining everything to me. I have never had to deal with oxygen before. The equipment is large. After all the explaining on how to use it I felt we were good to go. Last night was our first night using it. I was unsure on how Gabby would react to the tube in her nose. She did better than I had expected. The tape was the worst part of everything. I need to look into some different types of tape, and stickers. Not sure what is all out there but I am sure there is some creative parent who has already found the perfect sticker. I hope with each passing night she does better, and like my smart aunt said " At least they caught the decrease. She will store O2 during the night and have more energy during the day. The O2 will help her little body heal."

The reason this is so hard for me to swallow is the fact I worry this is her starting to regress. I know its a sign of regression. We were stuck in a hard situation. We don't want the grand mal seizures to continue, they are more dangerous than the Kepra. So although there are side effects to the Kepra, it was a what was better for her situation. Knowing that Oxygen needs to be used at nights is not that big of a deal. I would rather not live though the seizures. Thank you all for your prayers for Gabby. They mean more than words can say.