Thursday, February 18, 2010

Many Updates

Clinic Update-I now need to take 2 cans of food daily via my feeding tube because I have lost 10 pounds in the last few months. I have been feeling much better and have increased energy since doubling the "magic pill" and starting the nutrition via the tube. Sadly, this does not change my life expectancy. Last August, my doctor had given me 12-18 months to live but because I have been feeling so much better, I assumed that my time line would have been extended. Unfortunately, I learned that the magic pill and nutrition are helping with my quality of life, not my quantity of life. He feels the timing given back in August is still accurate :o( The cat scan and x-ray from my hospital stay shows blacken areas on my lungs which means those areas are no longer working. I plan on beating his prediction though bcz Tana graduates in 15 months and from there it's only another 6 months till Joshua starts preschool. =)

I started my aqua physical therapy a few weeks ago. I LOVE IT! I can walk in the water, do side kicks, squats, etc. All of them are extremely difficult but I love being able to do these things again. Although I am feeling a lot better and have more energy, I definitely nap after my PT. :o)

Last week, I had a voluntary/research spinal tap. My neuro doctor wanted to perform one because I have seen such improvement from the magic pill and since I consider myself a pro at spinal taps, who was I to say no. The evening after the spinal tap, the minute we moved me wrong I knew it and the following day I experienced a spinal headache. This was the worst headache I have ever had in my life. By Thursday, two days later, my dr office had me go to ER for a blood patch, which immediately fixed the headache but left me with a sore back for a few days. The sore back was much preferred to the headache though. =)

Tana has started tennis and made the Varsity team at her high school. She is ranked #4 out of 6 players. They have had three matches this week. The team lost all three, however Tana won both her singles and double in her last match!! :o)

Joshua just had his 15 month well check. Everything looks good. She is a bit considered with his weight since he dropped to the 50% percentile for weight (still over 100% for height). The only solid food he will eat is graham crackers. She is not too worried at this point but called Phx Children Hospital and talked to their feeding specialist proactively. We have an appointment set up for late April in the event that he is not eating more solids by then. He had his second ear infection last week so we have moved his ENT appointment to this coming Monday and he will likely get tubes in his left ear.

The day I went to the ER, Tana had her bottom wisdom teeth pulled, and the next day is when Joshua went to the dr. for his ear infection. They say things happen in three's, but it looks like Bob has the flu again. We are due for a break soon! =)

2 comments:

@findingkansas said...

I love you! You are due for a break and I will be praying for you to have one. I know you are a strong woman. Hang in there. XOXOXO

MY COMPUTER said...
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