Philip's Journey |
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Philip has been on Aloe juice for three months now. The results are amazing! Within days, he began eating...A LOT. He has never eaten food before. Always just nibbled and drank a lot of milk. His BMI jumped dramatically in one month. I am shocked at this. We are pretty certain that his intestines have been damaged since he was a baby and he was in constant pain (without knowing any better). Who wants to eat like that? Now, he feels better and eats real food. he is learning to eat since this was never accomplished as a toddler. He chokes sometimes but he keeps trying. If he misses a dose, he tells me his tummy hurts. So sad that he only knew pain for 4 years!
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So, I did not post after the culture, but it did come back with a small amount of staph even though he was on Bactrim. They did not treat. Now he is breathing deeper and his nose is constantly running. The doctor decided to try him on Zyrtec for a few days to see if it is allergies. Today he had a slight fever. Now I am kind of worrying about an ear infection, whi
Today we took Philip to VCU just for a culture via Dr. Schmidt's recommendation. He is already on Bactrim, but we just want to make sure he is not growing anything after this sinus infection. We also reduced the Zantac down to 1/2 ml BID! So far, so good
Well, sickness has come back. David brought home a nasty case of sinusitis and bronchitis. We all got it. Luckily, we got Philip on antibiotics early. It's not in his chest yet, but he does have an ear infection too. 10 days of Bactrim will hopefully knock this out.
This Saturday, at the CFF Leadership I met a lot of people I had been waiting to meet. It was not the first time I met Dr Beall. The first time was at Dr Schmidt's house when Philip was just a baby.
This time, I was in the parking garage at the Hyatt charging my cell phone. I showed him my van and all of the "artwork" for CF on it. He thanked ME. He thanked me for spreading awareness and raising money for the foundation. That's right, the President of the foundation that works tirelessly to save my son's life, thanked me. I had no words for him. There is some misconception that I am some pillar of the community, out doing all this good. Wrong. I never was. I, like tens of thousands of mothers, was forced to do this. The thought never crossed my mind to go out and fundraise for anything. I was perfectly happy living MY life, worrying about me. So I thought. One terrible personality trait I have is not having the ability to wait. I am impatient and strong willed. AKA- pigheaded. I guess that is a good thing now. My only option is to go out and help find a cure for this horrid disease NOW, not 20 years from now, when it will be too late for Philip. I have never been a salesman. I have never, ever, liked asking people for money, especially strangers. I am now shameless. I will approach anyone that will listen. I have to. So many good things have happened since we entered this CF life. I know I have said this many times, but I have met the most amazing people within the CF community. Everyone of them is such a genuine, wonderful person. I have never been to a conference where every person there was so delightful to be around. Perhaps the most amazing thing that has happened, though, is the change in me. I see everything differently. I feel every emotion more. That is a good thing. I donate time and money to charities that I know nothing about. I do this because people have done this for me. I have not only met wonderful people, but seen the love in people that I did not know they felt. There are so many people that have given and helped since Philip's birth. Even people that I have not seen in 20 years, or classmates from high school that I never even really associated with much. Amazing. So, I have a little trouble understanding why there are CF families that are not involved. The CFF is amazing. I urge you to call your local chapter. They are there for you. This organization is like no other foundation I have ever heard of. Harvard law school studies their policies. When you donate and get involved with the CFF, your money is not going to waste. This investment you make today will show dividends in your lifetime. This disease will be cured, and I will be a better person in the end for being a part of it. I keep telling myself this, because I know it is true. Too many things in my life have changed for the better in spite of this unfair disease residing in my baby <3 Love to all of you! Today we decided to cut Philip back on his Zantac and see how he does. I'm not convinced he still needs it, so we will try half his dose and do 1ml twice daily. I also have been researching other things. We already do Culterelle in the morning but decided to also try Florastor at night. Adding this second probiotic has made his stools normal as far as odor is concerned. I also started him on Cod Liver oil with vitamin D. D is known for it's good effects on lung health. DHA can be so beneficial to CFers. It can possibly slow the progression of CF. We hope this will all be positive for Philip! Some good articles are http://cysticfibrosis.about.com/od/alternativetreatments/a/probiotics.htm.
and http://oilofpisces.com/emphysema.html We got a call from Philip's doctor today regarding the throat culture they took last Wednesday. NO STAPH!!! This is his second culture in a row that has been clean. We are so excited to be starting new therapies (Pulmozyme and Hypertonic Sali
Last week we went to Florida for our annual Disney vacation. The kids all had a blast and Philip loved it! He saw Mickey Mouse Clubhouse Live and had so much fun. He got to meet Buzz Lightyear which was definitely a highlight!The coolest thing though, was we found a salt spa to take Philip to (since everyone was sick). It was the coolest place and so good for him. I hope something like that can be brought to our area soon!
Philip has a bad double ear infection. We are starting Augmentin and rechecking in 2 weeks. Good news (or bad) is that his last culture has come back negative for staph finally.
We got the call today that Philip has cultured a strain of pseudomonas (no identification listed). However, it is NOT pseudomonas aeruginosa or b. cepacia!!! I will see his regular CF dr at the CF conference tomorrow to discuss what to do next. He told me that we will be doing a follow up culture no matter what.
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AuthorCatherine Hopkins Archives
August 2013
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