Hannah went to the Rheumatologist last Thursday. She hadn't been in 6 months due to an appointment getting cancelled due to inclement weather in January. We knew she has been doing great, but when we told the doctor, she was thrilled! A resident actually came in and asked us all the questions about how she's been doing and examined her. Then, when Dr. Morris came in, she barely even looked at her because she knew she was doing so awesome. She had to have blood work done at this visit and was such a trooper! She watched the nurse put the needle in her arm. She didn't start crying until she saw the blood coming out. It is amazing to us how well Hannah has taken all that she has gone through for just being 4 1/2 years old!
We can not be more pleased with how she is doing! The last time we saw Dr. Morris in October, she told us that if Hannah continued to do well, we'd think about tapering her off her meds this summer! Well, she confirmed that again and told us that as of August we can begin to taper her off her Methotrexate!!! Currently she gets a shot once a week of Methotrexate. We give her .3 ml. At the beginning of August, we get to go down to .2 ml. We have to watch for any limping or stiffness. If all is good, then in September we can go down to .1 ml. We go back to Dr. Morris on October 1st. If all is still good, she will probably take her off the Methotrexate completely! That's what we are hoping for!!!
At this visit she also told us about another mom of a little girl about Hannah's age that has the same kind of arthritis as Hannah (but in her knee). This mother was very upset because Naproxen was not quite helping her daughter enough. When Dr. Morris told her that their next step would be Methotrexate, Dr. Morris said this mother got very upset and concerned. So, she asked if it would be okay with us to give this mother our phone number in case she wanted to talk to someone who has been where she is and could understand, share her concerns, but give a positive view of this drug. I was so excited by this! A chance to talk to someone who is going through something like we did would be so awesome! We desperately wanted someone to talk to who could understand back when Hannah started this treatment, but unfortunately we didn't know of anyone.
Since then I have made one friend, Wendy. Her little girl who is about a year younger than Hannah also has the same kind of arthritis but is fortunate enough to be doing well with just Naproxen! It has been amazing getting to talk to Wendy!! My prayer is that this new mom will call me and I can help her because I know exactly what she is feeling!
While Hannah is doing wonderfully, there is the chance that the arthritis could come back in as little as 2 months or even after a year. We will just have to see how she does when she comes off the medicine. I would be lying if I said I wasn't scared. It has been so long since we have seen her in pain, I really, really don't want her to go through that again. I wish we could be rid of this disease forever. I just keep praying for her good health.
We are getting to do another Arthritis Walk in May! We have set up a team called Team Hannah Banana! This Walk is a 1 mile walk to raise awareness and, of course, raise money to help fight the disease of arthritis. The Walk is at 9:00 a.m. at Cooks Landing at the Big Dam Bridge in on Saturday, May 16th! There is no fee to come walk, but donations would be greatly appreciated! They are trying to make this a family friendly event, so there will be a lot of fun stuff for kids! You can go to http://arthritiswalkcentralarkansas.kintera.org/teamhannahbanana for more information or to join our team!
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