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My Story

Jaiden and Marlo are sisters both born with different rare medical conditions. Jaiden is 5 years old and has a rare chromosome condition called Mosaic Chromosome 15 and 8. Marlo is 3 years old and has a rare Mitochondrial disease called Pyruvate Dehydrogenase Deficiency. Both girls also have many other medical issues but are happy, fun little girls.

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Friday, July 3, 2009 9:59 PM, EDT

Jaiden still has the same tube. We are trying to hold out until we can arrange for her to get the new mickey gj tube put in. She is tolerating 1/3 strength formula right now without any issues. I am hoping to have her back up to 1/2 strength if she can. I'm not sure she has a hole in her tube. If she did she would not be doing as well as she is now. It could have just been her motility slowing down and then reversing back through her g tube. Nothing is ever easy.

Last night Jaiden had a rough time. I'm not sure exactly what happened. She was happy and playing until late last night then all of a sudden she started having respiratory issues. She sounded very wheezy and crackly through out. At one point she was up to 1.5 L of oxygen and working really hard to breath. After some good chest physio and a few good coughs she cleared out a lot of mucous and sounded much better. She still need oxygen but she was able to come down to .5 L. By 11 am she was off oxygen all together but she has only maintained sats in the mid 90's. Usually, she is 99 - 100. She has done this before without any real reason why so I don't know if we will ever know what is going on.

Marlo saw Nepherology today. We were following up about the potassium and calcium issues she had in March. She has had a few urine samples since then and a visit today. Her potassium is fine now which is good but now there are issues with her calcium. I am not sure exactly if it is high or low (Scott took her to the appointment and didn't ask any questions). He prescribed her Potassium Citrate though. I did put a call in to his office to get some better answers. I have not heard back yet but I hope I will on Monday. I am suspecting that it is hypercalcemia though.

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