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Totties Pretties on Etsy

Totties Pretties on Etsy
Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Friday, April 15, 2011

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.


Lentini Family said...

Hey Amy, First, Jenna is a remarkable girl and you are amazing parents. I am so sad that she is still struggling with the infection. And yes, the decisions you have to make are totally not easy to make. I am hoping that her pain doesn't increase. I hope the new PT will be better. And as for the 504 plan...well we have ours Monday...I am glad AF is supporting you. Hugs to you. I think of you often.

Deetipton said...

The ears... Jeez!!! And we were just talking about that not long ago. I'm so sorry this infection has to be so stubborn. What we were told years ago is that in children, the adenoids don't have the ability to bounce back to their normal size after swelling. At least on the bright side, compared to everything else that she goes through, if she does need surgery it should be a piece of cake for her ;)

I'm soooooo glad the AF is helping you so much. I still wonder what the heck is up with that guidance counselor?!?!?! Didn't you say she's retiring this year? Lord, I hope so! We got our 504 plan from our rheumy, but in our meeting at school we told them that we needed to have it on file for future reference. Any of the struggles that she's having now may well be life long, and deserves to be noted. This way, if administration changes, when teachers change, or (please, Lord!) when guidance counselors change, her needs will be on record. We didn't need the pointers, but our amazingly wonderful kindergarten teacher gave us a bunch of them in 2008. Hopefully, you won't have to go back before August, but if you do, keep that in mind ;) I have sucked lately at keeping up with anything. I hope you are all otherwise doing well. Love you guys!

Amy Cunningham said...

Hey ladies! Thank you so much for your kind words and show of support! I think of y'all often and pray for you as well.
Rochelle I HATE this battle of treating the chronic illness versus the current illness! Danielle, I have my doubts that the adenoids will shrink. ):
As for the 504, I think that what we have gotten put in place is good for where she's at right now. I also feel that should we need to alter it, they will be open to it.