Ears. PT. 504

One thing at a time, let's start with her ears. Wednesday of this week we saw the ENT to see if we could get to the bottom of her chronic ear infections. Basically one really long infection since February. She just finished her 4th round of antibiotics today. He confirmed what we already knew, that she has a build up of fluid in her ears. He suspected, as we did too, that her adenoids were enlarged making it impossible for anything to drain. She has had this nasty junky cough and snotty nose since last Fall, I guess that's all part of it. So he did an xray to check it out and sure enough they are enlarged. He also said that she has "significant hearing loss" which was surprising since we thought her hearing had come back! I was so shocked that I forgot to ask if this is permanent? Anyway, the game plan is to TRY to shrink the adenoids with nasal spray over the next 30 days and then we can avoid surgery. I'm all for it but I have my doubts. I suspect that in a matter of days, after finishing the antibiotic, the infection will return, as it has since February. Last week we were told by her Rheumatologist to hold her MTX. I am waiting on a call back as to whether or not we are to hold tonights MTX and Humira or give it. Also, if she does need to adenoidectomy and tubes inserted into her ears, do we stop then too? For how long? Over the last couple of days we have noticed a HUGE change in Jenna. Her energy level and attitude are incredible. I guess the MTX takes a larger toll on her than we realized! It's nice to see this side of her again. But, as my husband pointed out, this also means that she may be in for some serious pain. Time will tell. I want to emphasize her that it is the meds that control and treat her JIA and Uveitis that have made it impossible for her to fight off these infections. She is at risk and will suffer with any decision we make, whatever the outcome, she suffers in one way or another.


Now, onto PT. We have met with the PT only twice now and have been left to work on things ourselves at home otherwise. Each time we have met with him I feel as though he isn't listening? Or doesn't "get it"? Not sure, but something felt off. Jenna has been struggling with just basic leg lifts, particularly on her left side. This does not mean that she complains or tries to avoid doing them. On the contrary, she loves to. I pointed out to him that she was struggling, he suggested that maybe she isn't trying. Way to get my hackles up Dude. He tried giving her some different options for exercises and stretches, but she wasn't able to coordinate her body properly. It was getting frustrating. So, after talking to my amazing group of Moms I was referred to and contacted a local PEDIATRIC PT...DUH! Will we ever learn?? I am sure this other guy is great with his adult patients, just not my kid. I called this woman that specializes in peds and I loved speaking with her! I know this will be great. She addressed all of my concerns and I agreed 100% with everything she told me. We meet with her next Saturday!! Can't wait!

Last but certainly not least, the dreaded 504. Have you been following along? we have been trying to get this done since last year. Yep, last year. Just search 504 up at the top of the page, it will pull it all up. ;o) To sum it up for you, her school didn't feel she needed one nor was she entitled to one. I let it go for a bit and was stewing on it. Then after speaking with the folks at the Arthritis Foundation, I was urged to push on for it and they would be right there with me. I love them!! So I emailed Jenna's teacher to give her the heads up of what we were prepared to do if they wouldn't comply, suddenly, they were eager and willing. We went from them not even wanting a letter from an AF rep or any pamphlets or handouts on her diseases and meds to wanting to MEET with a rep in the hopes of learning more. HUH?! Oh well, whatever, let's go! So, Larry and I, along with an AF rep met with the Principal, teacher and school nurse. Someone....was noticeably absent! The guidance counselor. I don't know if that was intentional with the scheduling but it certainly worked in our favor. The entire mood of this meeting was completely different! I still don't think that they agree with a 504 for a 1st grader. They seem to think her medical action plan is sufficient, but we felt much more support and understanding from them and for that I am thankful. If anything new comes up between now and the end of the year we will meet again, otherwise  we will meet again right before school starts up again in August.

And in other news...

Jenna is still battling ear infections and is on her 4th course of antibiotics within an 8 week time frame. Yeah, that's just awesome. She no sooner comes off of them, she's back on. This time she didn't even have a fever, just complained of pain in her ears and she was deaf, again. So I really didn't even think they were infected. I thought maybe there was just too much fluid. I called her rheums office at Duke to run it all by them and see what they would want for if she did go to the ped. They are so awesome with communication that even on a "bad, crazy day in the office" in their words, they STILL called me back within a matter of a couple hours. The rheum said that 1) whether her ears are infected or not, it's time to call in an ENT to take a look. :(  2) Skip her MTX this Friday for SURE and possibly hold MTX and Humira next Friday. We'll wait and see what the ENT says about what's going on when we see him Wednesday next week and then call Duke. The rheums said that given how long she has been on MTX (Sept.08) and Humira ( Dec.09) she SHOULD be okay skipping these doses. Not entirely reassuring but I know we have no choice. Her ped said that the ENT will LIKELY suggest tubes. Not a big deal, right? Lots of kids have them, lots of kids have had many. Well not MY kid! Sure, it could be worse. Sure, I'm thankful it's not. But that doesn't always make the current struggle any easier. I read something this morning, "Without struggle, there is no progress.". I liked it, pretty profound.

When Jenna was last seen at Duke, just last month. Seems much longer ago! Anyway, we were given a script for PT for her. FINALLY. I really didn't know what to expect, I just wanted her to get some relief from the constant pain and fatigue.  I found a place here in town that looked great and they said they could help her. At her 1st appointment we learned some new things, ALWAYS learning with this disease. Her hamstrings are SUPER tight! He thinks that this is what is causing her pain behind the knee. Also, she has significant weakness in her hips and upper legs. I had no clue. We thought she was strong. Her hamstrings are so tight that she struggled just getting into some of the positions to stretch. Her hip muscles so weak that she needs to contort her body to lift her leg. WOW. We went home with some "homework" and had our 3 week follow up this week. I'm not overly impressed. For one thing, Jenna is 7, not 77. So if you for the most part treat 77 yr olds, are you REALLY going to know how to handle a 7 yr old?? I don't know, things didn't feel right at this appointment. Jenna had really struggled over the last 3 weeks with these exercises and she didn't make any progress. When I told him this, he said that with kids it's tough to tell because maybe they just aren't trying. DUDE, wrong thing to say. I tried telling him how much the leg lifts hurt her hips, especially the left hip which we noticed is weaker. He kept mentioning the exercises hurting her behind her knee. HELLO?? Is this thing on? Her HIP, they hurt her HIP. Ugh, I don't know. I just had that "feeling", ya know? So I put it all out there to my AWESOME group of JA Moms on Facebook!! LOVE those ladies! They told me that she for sure needs a ped specific PT, I really should have known this. Also, they told me that I did the right thing by listening to my gut. It hasn't failed me yet. So, one of the Moms I just met and she's local AND she gave me the name and number of the ped PT that her daughter used AND she is right here in town! Trouble is she is out from knee surgery but all good things come to those who wait. :)

Okay, ONE last tidbit. Remember WAY back last Fall when I posted about requesting a 504 plan for Jenna at school? Remember the troubles we faced with that? Would you believe....we are STILL struggling to get this? Yep, still struggling. I had decided to let it ride and try again next year. After speaking with the folks at our local AF as well as some FIERCE JA Moms I was encouraged to pursue it. Things are moving along. I hate that I needed to make threats to get things moving, but they are none the less moving. Without the Arthritis Foundation....NONE of this would be possible. I told them in no uncertain terms that I can't do this without them! And you know what? They've got our backs. How...cool...is....THAT?

A Work In Progress

Yesterday morning we all finally met to have Jenna's 504 plan meeting. We have only been trying to do this since the beginning of November. It's now the end of January. ZOINKS. Mother Nature played a role in it, cancelling school and therefore the meeting on two occasions. Plus trying to coordinate with our schedule, her teacher, PE teacher, principal, guidance counselor and school nurse (who is shared w/ another school) is tricky at best.

I was so nervous going into this. I don't do well in these kinds of situations. It always feels very confrontational to me and I don't do well at all with confrontation. That, plus, our initial meeting didn't go real well. We left there feeling as though we would need to battle school officials to get this for her since she is ahead of her grade level academically. *I* knew that her medical conditions entitled her to a 504 plan to ensure her comfort and attendance at school were not an issue. Just not sure they knew.

We felt much more supported at this meeting. The majority of the room seemed to understand, have compassion and be on Jenna's side. Makes sense given this is a K-3 school right? Compassion? Understanding? For children?? Eh...at any rate, some great ideas were thought up and I feel confident that everything will work out.

I did mention that at her March appointment at Duke Children's I would be speaking with the social worker there and I will see if she can contact the school guidance counselor directly to iron some things out. I really think that may be the best route.

I emailed her teacher this morning to see if the tempurpedic cushion we had brought in for her chair had made it to the classroom. She said it did indeed and so far it seemed to be working great for her! She also said however that this had her classmates asking a lot of questions. She felt it was time to sit them down and discuss Jenna's illness with them but wanted to check with us first to make sure that was okay. I love that she is so in tune with all these kids. I told her it is absolutely okay. Jenna won't be comfortable with it but she needs to learn that her friends can be her biggest support system. This disease is a part of who she is. She needs to own it. I am very eager to hear how this all played out today.

Stay Tuned....

So some of you may have been left wondering, what ever happened to Bean getting a 504 plan put into place? Yeah, we've been wondering that too. We last met with her teacher and school guidance counselor on Monday November 8th. If you'd like, you can go back and read all about that meeting here. I gathered all of my info from our pharmacy, her doctors and the Arthritis Foundation. It's a LOT of info making up a big, fat, blue envelope :) Of course there was the Thanksgiving break to get in our way and slow us down, and I know it's only been just over a month, but MAN it feels as though this has taken forever. I got an email from her teacher (LOVE her btw) this morning saying that we are on for this Thursday December 16th at 8 AM. Finally we are getting somewhere. Now I'm nervous though. After how badly our last "meeting" went, I am just terrified that I will either 1) Break down in tears of frustration, or, 2) Have a major angry fit. Either one will be ugly. So, please pray for ALL of us that will be in this meeting. Thanks y'all, and, like the title says, stay tuned...

Perseverance

per·se·ver·ance

  [pur-suh-veer-uhns]
A

–noun

1.

steady persistence in a course of action, a purpose, a state,etc., esp. in spite of difficulties,

obstacles, or discouragement.

Now that my friends is a word that you truly can't appreciate until it is put to use. *sigh* So on Monday morning we met with Beanz teacher and the school guidance counselor as mentioned here. I knew that we wouldn't actually be writing one up that morning and putting it all in place. However, I also wasn't expecting how we were all treated by the "counselor". So, so, so cold. I just can't seem to wrap my mind around all of it. According to her, since Bean is "excelling academically she is not entitled to a 504 plan, that is for students that need assistance accessing academics." Umm...no I don't believe so. That would be an IEP. We aren't asking for an IEP. We are asking for a "medically necessary 504" as her doctor called it. IEP's or individualized education programs are designed for children that need assistance with their learning process. Since Bean is at or above grade level in all subjects, clearly she doesn't need an IEP. A 504, of which she is legally entitled to under Section 504 of the Rehabilitation Act of 1973, is simply to ensure that she is safe and comfortable at school. That any accommodations that she may need as a child suffering not one but TWO chronic illnesses are in fact being made. Such as, a chair that isn't painful to sit in, time to stand up and walk around if need be, a place to rest during the day, special writing tools or even being excused from writing altogether, permission to use a rolling book bag, extra time to transition between classes, modified gym class, a nurses pass on hand for her to use at any given time, no limit on excused absences <----THAT is a big one. Children like my Bean miss a whole lot of school. For one thing, they have frequent doctors appointments, routine labs that need to be done, the illnesses themselves will cause days that make them need to miss school, then there is the fact that they have NO immune system and therefor pick up EVERY bug around. The tiniest bug that may give a "normal" kid a runny nose, can lay these kids out for WEEKS. These are just a few examples of why my Bean and the 300,000 kids just like her need a 504 in place. The "counselor" couldn't or wouldn't see any of this. Her teacher understands what Bean goes through and is willing to make any accommodations that she may need. But what if she leaves? What if the nurse leaves? What about next year? And the year after that? She is SIX years old!!!! I need to make sure that she gets what she needs NOW and through COLLEGE. YES, a 504 CAN go to college with your child. Once in place a 504 can be changed at anytime and should be reviewed at the beginning of every school year. The Arthritis Foundation has some great tips for school success. I also encourage you to reach out to your local office for help. I did after that waste of a meeting. I emailed our local office and heard back the next day. It felt so good to know that I have someone with me, that has my back in my fight for my Bean. I also would encourage you to go into your meeting prepared. Assumptions are SO dangerous. I simply assumed that the "counselor" would obviously be willing to help my child. Bring ALL the documentation that you can. Have a letter from all of your child's doctors explaining the diagnosis, a list of current medications and their side effects, a letter from your local AF office is a good idea too. So as it stands now, I am gathering all my documentation. Once I have it all neat and tidy I will be scheduling our next meeting. *rubshandstogether* CAN'T WAIT!

A Little Of this, A Little Of That....

So let's see, where are we? Okay, so, both of my small ones have been "junky" for some time now. Lots of snot and mucus but no fever. So, whadda ya do? No fever, not sick right? Just keep rinsing the mucus down the sink and wiping the snot. Well, on Wednesday I had Bub into the pediatrician for a follow up on something else. While he was in there anyway she gave him the usual once over. Hmm....his lungs are junky. I'm going to give a 3 day course of Zithromax to get it out of his system. So I tell her that if he's needing antibiotics that I had better get Bean in because she sounds the same! Only snottier! So I brought Bean in this morning. Now Bub just finished his last dose this morning and is NO different. She listens to Bean, Yup she's junky too. They are now both going on Omnicef. I need to start keeping better track. I am 98% sure that this is what they always end up on after trying Zithromax. Going to have to look into that. So we agree that Bean needs to skip her MTX this weekend to allow her body, along with the Omnicef to kick this crap out and get her feeling better! Poor thing has been so tired and washed out. Seeing the bags under her eyes kills me.

Speaking of eyes, I noticed today while waiting for the doctor, her eyes are very bloodshot. Hmm...from being tired? Maybe. From a Uveitis flare? Maybe. So....what do I do? I hate to bring her in for nothing. I don't want to be that Panicky Parent ya know? I'm thinking that if there is no improvement in the appearance of her eyes by Monday then I am going to call and get her in. Better safe than sorry I suppose.

At her last visit with the rheum, seen here, he said her joints were fine. Not flaring. That it's the hyper mobility causing the pain. For me? The jury is still out. I don't know doc. Mornings have been AWFUL for her. She is walking peg legged, won't bend down because it hurts her back.

Sitting is getting to be more and more painful but so is standing. Well WTH is she supposed to do at school??

And speaking of THAT, we are finally going to get her on a 504 plan at school. We really should have done it last year. She is not a "normal kid" and so can't be treated or taught as one. I mentioned it to her teacher and I swear the woman sighed with relief! HAHAHA! She is in 100% agreement that Bean needs a 504. So, now we just need to figure out what accommodations she'll need. I need to at least have a rough idea put together by Monday morning when we meet with her teacher and the school guidance counselor. I know that we won't get it all ironed out that morning but it's a start. And my AWESOME JRA MOMMY SOLDIERS have helped me tremendously with this!!! I cannot thank God enough for bringing these families into my life.

These are pics that I took of Bean reading the Bible that she saw at the doctors office today. I have NEVER seen a Bible there. It was very strange. She got so excited when she spotted it. She snatched it up, climbed up onto the table, laid out and started reading :)