I am having a very hard time keeping up with everything and blogging, so blogging has been on the back burner. I will try to do better...
Our trip to Pittsburgh was quick and so worth it! Sage is no longer allergic to rice!!! She doesn't much like the taste of rice by itself, but she can now have cereals, bread, and other things with rice in them! So happy about this!
As for Ana Maria's update... I am so excited to report that the new medication, to increase her Cerebral Folate, seems to be helping in many areas!!! Ana is eating more than ever by mouth.. each day is different than the other, but overall she is eating more... what that means?... we don't know just yet. She is also showing sign of improvement in the neurogenic bladder area... she is going potty without prompts. As far as the bowels, we aren't sure what she is capable of, but it is too risky to test it out without the guidance of a colorectal specialist. Her leg pain has improved beyond what we thought possible! You may wonder if she still has pain, and the answer is yes... however, the frequency and intensity (for the most part) are far less than ever before. So, with all that being said, you are probably wondering what exactly all this means... and I have no idea. I have spoken to the specialists in Atlanta and in Cincinnati and we have all come up with some "next steps" of sorts.
First (step 1), we will be heading to Atlanta for follow-up. While Ana has had a tremendous amount of improvement, all of her pain is not gone. She is on the maximum dose of the medication and without another lumbar puncture... her dose cannot be increased anymore. So, they will decide at her follow-up if it is worth doing another LP. The goal is to eliminate the pain and wean her off of the medication that helps to control the neuropathy and seizures. Why? Because the seizure med further lowers the cerebral folate... I know... so confusing! The ideal situation would be to get her cerebral folate level to a normal range and prevent further neurological symptoms.
Next (step 2), we are headed to Cincinnati. Plain and simple... we want to know if the medication has improved bowel function. Ana has had over 1,200 enemas, and she wants a break. Will she ever get one? Maybe not. Is it worth a try? Absolutely! (Anyone who has ever had a 500ml saline enema would agree!) IF the medication has reversed the neuropathy of the colon and large intestine then a break is what she will get! Will this mean no more enemas ever? No, probably not... Ana has Mitochondrial Disease... and we understand things are never going to work perfectly here... in this world... with this disease. Now, you are probably wondering, "why Cincinnati?" Well, this is her colorectal team, and quite frankly, there is no other bowel management program like it. We will be there for 9 days. Each day Ana will get an abdominal x-ray to see if her colon and bowels contain stool. These x-rays will tell her team of doctors if things are working properly once enemas are stopped. If not... we come home on enemas. If so... she gets an "enema break." How long? We just don't know. With Mitochondrial Disease there are ups & downs... how long do they last?... no one really knows. We have to take it one day at a time. While we are in Cincinnati Ana Maria will also undergo some long overdo urology testing... we expect good news on the urology side of things for sure!
Next (step 3), we won't know until we complete steps 1 & 2.
Here is Ana's upcoming schedule:
- June 21st -> Atlanta, Mito Dr.
- June 29th -> Savannah, Cardiology (Annual follow-up.)
- July 7th - 16th -> Cincinnati, Colorectal/Urology
Summer has become very busy very fast! I pray things go smoothly and I pray that Ana will find peace in whatever the outcome is. Please pray with us. Prayer is so powerful! Please pray over these upcoming trips and please pray for God to provide financially. It is extremely costly to travel. Please prayerfully consider donating to help Ana. Donations can be made on this page through the "Donate Now" button at the top of the column on the right. They can also be made at any Wachovia Bank to the Ana Maria Bennett Special Needs Trust Fund. Gas gift cards and food gift cards are also extremely helpful when traveling.