Saying Our Goodbyes...

We met with Mary today. While it was a good appointment, there is still some areas in Mia's body that need help - her left knee was puffy underneath her kneecap and her right elbow is still very bent. Mia still has a hard time rotating her right arm so that her palm is facing upward. While these are minor things compared to what other children may be dealing with, they are still issues that prohibit Mia each and every day.

However, Mary agreed with Mia's rheumy that she is in a better spot than she was several months ago. SO....we are reducing her PT to once a month, unless she has a flare. Mary said many kids do well and then return later on down the road if there is a flare. If this happens to Mia, Mary said all we need to do is call them up and let them know. Since Mia has already been seen by them and has a history with them, she will be placed at the top of the list to be seen. Mary said this is their protocol for all JRA patients. Which is very nice...and, as a mom and the one who is in charge of and attends all of her appointments, this brings me much relief. But, for now, we are going to hold onto Mary and see her once a month. Her concern (and mine) is that Mia may be affected by the cold weather in the next several months. So, we don't want to discontinue completely in the event that she experiences any pain from the weather, like she has in the past.

So, for now, we said "goodbye" to Mary...until next month. Mia was very sad, but I explained to her that she won't be saying "goodbye" forever...just for a few weeks. So, we have given up our much-coveted, 10:00 a.m. morning slot and now we have to call ahead and just take whatever cancellations they have available.

With the cold weather approaching (*sigh*) and as an alternative to PT, we are going to look into aquatic therapy for Mia for the fall. This will help keep her joints fluid and her rheumy said many JRA patients have benefited from it. The only problem now is finding a pool. I checked with EI and they said they don't offer anything through their program. There are three pools in our area: one is about to close, and the other two don't do pediatrics. However, there is a center in Salem, NH that has a pool. I am going to contact them this week to see if we can get Mia on their list. If I can find a pool for Mia, then we need to contact our insurance company and see if they will cover it because most of the time they will only cover aquatic therapy OR PT. Not both.

In regards to OT, well, the new OT really isn't an OT...she is a PT. And we already have a PT. And while we love the social worker who works with Mia's language skills. frankly, I have NO idea why she has been assigned to have help in her social skills. On her initial eval when Mia was 22 months, she scored at a 26-month-old level in language/speech skills (surprise, surprise!). I think we all know that Mia can talk...and talk WELL! I guess they heard her throw in what they call "jargon" in the middle of her sentences and they consider this to be a speech delay. HA! My daughter has no type of speech delay whatsoever. To be sure, I asked her PT today if she thought Mia had a delay. She laughed, too. She said that Mia's language and cognitive learning skills are where they should be and that definitely does not have a delay. I had to be sure. I am her mother and I can understand EVERYTHING she says, even when it is mixed with "jargon." it is nice to have it confirmed by someone who only sees her once a week.

So, I told Cheryl (social worker), that we want to reduce our services. To which she told me that they, too, can do the once-a-month thing, but that only one therapist can attend. So, I told her, in a way as to not hurt her feelings, that since Mia's diagnosis requires more physical therapy than social, that we would go with Stella.

So, Stella will be visiting once a month. And Mia had to say "goodbye" to Cheryl. I think Cheryl almost cried. She hugged Mia for a very long time. It is hard when a child and a therapist develop a relationship and then have to say "goodbye." It is even hard for the parent(s). Cheryl has been working with Mia for almost a year now! But, Cheryl will remain the service coordinator and when we meet with the public school system next month we she will attend those meetings to help transition Mia over to their program. We are definitely going to continue to pursue getting her in with the public schools because their services are free and, should Mia have a flare, we will have another resource to fall back on.

While Mia is doing very well right now, I need to keep in mind that the JRA is not totally gone. It has not completely left her body yet. To many who know her, she looks fine. But, I know what to look for and what she still struggles with and there is still a battle to fight. I am reminded of those parents whose children had JRA when they were Mia's age and when they were a bit older experienced an unexpected flare which put them back at the beginning again (and on stronger meds the second/third time around). While are a hoping for the best and believing for a good report in October when she returns to the rheumy, we are also reminded that we need to continue fighting until she is completely JRA-free. And she will be...one day! :)