Wednesday, July 3, 2013

"Your Son Has Helped Other Children"

Photo: Happy Monday!!!!!

Those are the words Joey's eye surgeon told us at his follow up appointment last week. He said he was sorry that Joey had to go through 3 eye surgeries this year, but then he said that he had learned so much from Joey's case and that Joey's various eye issues have "helped other children" because he will carry those lessons with him through the rest of his career. He said that each child and each surgery he performs helps him learn and that the uniqueness of Joey's case would be especially helpful to future cases and patients.



Photo: They are off to the OR! One dot over each eye so no one accidentally operates on his legs.

His words meant so much to us. It was a nice way to wrap up what has been almost 40 various trips up to the Cleveland Clinic Cole Eye institute in the past year. His words reminded us that sometimes Joey's journey is much larger than just Joey or our family- it goes beyond that. It goes to the other children his doctors treat, it goes to friends and family. His little life has grown beyond just us.

It Wasn't Brown Syndrome!!!

We found out after surgery that Joey does NOT have Brown syndrome! His surgeon was so shocked because he was convinced that Joey had it that he tested Joey's right eye 5 times and each time the eye moved seamlessly. At that point, they moved on to Plan B, which was to go back into the left eye (for the 3rd time) and operate on the upper muscle and try to tighten it to stop it from wandering and pulling way up to the left and off the grid.


Joey was the first case of the day and for the first time ever he came out of anesthesia with much less hoopla and anger.  He was much more relaxed and calm. Is it because this was the third time? Maybe because he is older? We weren't sure, but things seemed to be easy, breezy, peezy (as Tommy says) as we were able to head back home to Akron early in the afternoon.


WHY CAN'T HE BREATH???

Easy, breezy, peezy didn't last very long.  By Friday night he was coughing and having some trouble breathing. On Saturday it was worse. On Sunday, while he was napping he was coughing, so I went in to see him and he was literally foaming at the mouth because his airway was so restricted. I picked him, frantically called Tom who had gone into work and then Joey vomited all over me and was able to breath again. For a split second I thought about calling 911-- I'm not sure why I didn't. I always have that fear that I am being the crazy mom. Do you ever feel like that? How do you know when to make that call? How do you know when to go to the ER?

Photo: Post Op follow up! Not Brown syndrome- Joey's surgeon told us that despite him having to have 3 eye surgeries, Joey's case has helped other kids from all his surgeon learned from Super Joe. Pretty awesome!!
What's up, Doc? Are we good here?

By the time his follow up appointment rolled around he had started to breath better, but had us scared to death. We have slept with all bedroom doors open and the monitor volume on since the surgery and there have been a few nights where we brought up the old pack and play and had Joey sleep in our room with us. The funny thing is how big he looks in the pack and play! 

Joey kicked off this week by refusing to cooperate during PT on Monday morning- I mean just refusing. It was one of those embarrassing refusals. The kind that make you feel like a failure as a parent who cannot "control" or convince her child to comply. I will just put this out there-- therapy is AMAZING for Joey, but it is a hot, stressful sweaty mess for me. I worry about him being a good little student. I worry about him doing well. I worry about being there on time. I worry about what we have to get to next. Monday was no exception, Joey was stubborn, he was crying, he would just lie on the ground and put his head in his little hands. "Oh for goodness sake, Joe," I kept thinking to myself.  "Just do it already."

Photo: Am so honored to be one of the 30 for the Future from the Akron Chamber of Commerce. Holding my future right here!!!

As the day progressed his attitude and spirit declined instead of improving and before I knew it his temperature was 102 degrees. Ugh. Why had I been so hard on him? Why had I been so annoyed and disappointed in him during therapy? Here he wasn't feeling well and was burning up.

The fever has lasted for three days now and Super Joe just isn't quite himself. 

Photo: Uh-oh, Super Joe!!! Please feel better little man!!! 102 temp, no appetite and he napped from 1pm-6pm when I went in and woke him up. Got to get this bubba better for the 4th!!!σΎ”•

He napped from 1pm until 6pm on Tuesday and I finally went in and woke him up. He has been lying on the ground, falling asleep, crying and has not been himself.

We went into the doctor on Tuesday and he tested negative for the Strep Test and his lungs sounded pretty good, so they sent us home with a prescription for a chest x-ray and a CBC work up. 

Today we had his ENT visit because one of his tubes has fallen out. Based on the past 8-12 weeks of continual sickness, his enlarged adenoids and swollen tonsils and his reactive airway disease, his ENT has decided that in the next 2-3 weeks we need to get Joey in to have his tonsils and adenoids removed and to have his ear tubes replaced.

The key will be getting Super Joe healthy enough for this to happen.

Then, post surgery, his doctor wants him to not to do any therapy for 2 weeks following the surgery. Ugh. No PT, OT, Speech, Horseback riding or swim therapy.  UGH. UGH. UGH.

Therapy brings tears out in both of us. Joey cries through his discomfort and through being pushed to new levels and past his limits. I try to hold back tears and hide them as I argue with myself and tell myself not to save him, but to let him work through it because it is good for him. As a Mama Bear and a Warrior Mama-- I want to save Joey. I want to make life easier for him, but therapy and all of his various procedures are just necessary parts of our life right now that will all help make his life easier and better in the long run. 

Do I want him to miss 2 entire weeks of therapy--NO!  It stresses me out to even think of it, but if it helps Joey to feel better and be able to stop being sick all of the time, then it will be worth it.

Although his various appointments and therapy can be trying and can be tough-- we are always grateful for the amazing therapists and his amazing medical care. These are the people who are always looking for the best way for Joey to learn, the best way to keep him interested, the best way to bring out the best in him. I see Joey's therapists more than I see most people and they have become friends and confidants.

Photo: Joey was such a brave boy!!!!! He rode Rufus for about 15 min and never cried. He looked like he wanted to cry the whole time, but he never did and he almost smiled!!!:) We are so proud of you Joey!! What a great start!

How do you help your kids or your family push through the hard times? Do you ever want to save them, but know you have to let them learn? How do you cope?


Have you seen the new HBO Documentary "Miss You Can Do It"? The next blog post will be about this new documentary.  Wow. It hits home in so many ways. Watching these families and their journeys and their children's journeys....all I can say is, wow. 

Hope you and your family have a wonderful Fourth of July!!!

Photo: Super Joe!!! Got our call- reporting to Cleveland Clinic at 6:30am.

17 comments:

  1. Sorry to hear Joey is going through a rough patch with his health. And yes I have had that horrible moment too may times when I'm not sure if they'll think I'm a crazy mama or not for calling an ambulance or taking him in. Don't know why we do it to ourselves!

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    1. Thank you, The mama!!! I agree- why are we so hard on ourselves? I think we are all just trying to do our best!

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  2. As the old saying goes: "No pain, no gain." You are a good Mama Bear; smart enough to know what your boy needs and what he can tolerate. Keep trusting your instincts. You are doing a wonderful job!

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    1. Thank you, Christine!!! I so want to cancel the next surgery, but he probably should just get it over with before school starts. Thank you for your support and kind heart!!!

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  3. I absolutely feel like the "crazy mom" with the ER and 911. I have called 911 twice. The first was when this drunk guy kept co ing to my door and knocking. After the 3rd time, I called. The other was a few months ago when my 5 year old swallowed a quarter and was choking. I know there have been a few other times when I could have but didn't, because I didn't want to over react. I resist the ER for that reason too. I'm not a good one as far as pushing Kamdyn. Her PT accused me of coddling her. I just hated to see her get so upset, and then she would shut down anyway, and it felt like there was no point. She's been hating speech therapy for a cup,e of months. If I tried to leave the room, she would scream, wouldn't cooperate, and ignored the therapist like she wasn't there. Finally, today she went in, no problems, and did great. For some things, I think she works better for me. So if she really resisted the therapist, I can try to work on it more with her and get her used to it. Then, it's not such a big al the next time the therapist tires.

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    1. It's so hard to dial 911- isn't it??? Sounds like you had VERY good reasons to do it! I'm with you- I try not to coddle, but sometimes I can help coerce him a little bit more and sometimes he does better if I'm not standing right there. I like you idea of trying it more at home so they are used to it when they get to therapy- am going to try that approach!! Our speech therapist told me today that just because we have a set speech time, doesn't mean that it's what Joey wants to do at that time-- thought that was a great point. Our little ones don't get much say in when they feel their best and can do their best-- some appointments are better than others. Thanks for your good ideas-- I love hearing about how other mamas handle this!

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  4. Sending you a ginormous cyber hug right now, Jen! I'm so glad to know you & be inspired by you. You are a constant vision of enthusiasm, no matter what you may be feeling inside & your vibrant smile is infectious. May you continue to be the inspiration that you (& your family) are to so many. Keep believing in yourself, even when doubt sets in. I am in awe of your constant show of strength. (Must be that spinning class of yours!) Keep up the great work in all that you do. You are an amazing woman! We love you!

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    1. Thank you, Gina!!! We so appreciate your love and support-- and I love bringing my boys to Springside and to see you!!! You are such a dear friend and a wonderful person!!!

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  5. That is GREAT news about Joey not having Brown Syndrome. A total bummer about the T&A and ear tubes. We just went down that road and it was not fun. However, he will feel much better and hopefully breath better in the long run.

    As for the ER--go with your mama gut. I wish that I had more advice for you. We took Ellie in at the advice of her pedi (as in while we were at the pedi off) one year ago due to an atypical febrile seizure, lethargy, low platelets, and petechiae. They thought she might have the beginning of meningitis. The ER doc was like "why are you here?". On Valentine's Day, Ellie fell, stopped breathing, and had a rather large grand mal seizure and changes in mental status. We called 911 and when we got to the ER, the doc didn't come in for 3 hours. THREE hours. Yet, we have brought her in for dehydration at the NON-pedi hospital and they were efficient and glad we brought her in, no questions. I dont' get it. Apparently, what I deem to be a true emergency isn't but I rather be safe than sorry.

    Hang in there, mama bear. You and Super Joe will get through all of this.

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    1. I remember that!!! That was so, so scary!!! Isn't it so hard to know what is a true emergency and what can wait until the morning? I think seizures and not breathing definitely are true emergencies!!! Have been following sweet Ellie's latest and have been praying all is well. Thank you for your insight-- am glad to know I'm not alone!!

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  6. So sorry he isn't feeling well. Hailey hasn't resisted us too much with anything. Her personality is very high energy, always doing more. Hope you can get super Joe healthy for his surgery!

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    1. That is awesome that Hailey is such a trooper with high energy!!! Joey is usually pretty laid back, but when he is grouchy I am learning that it usually means something is brewing. Keep up the good work, Hailey!! Maybe you can send some high energy vibes to Super Joe! :-)

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  7. So sorry Joey and Mama are having this rough patch. I, too, have weighed the "ER or No ER" question many times. Nicky, my 9YO son with DS, is prone to croup and when it first started happening I wasn't sure if I should try home therapies, take him in, etc. Then 1 time, I finally decided to take him to the hospital -- on the way, I thought I'd have to call 911 to meet me on the way to Akron Children's because he was just not breathing well and panicking. WHen I got there, they didn't even check me in -- just rushed him back to get a treatment - his lips were blue. We were in the hospital for 2 days after getting his respiratory under control. Now I don't care if I'm overreacting or not -- if its anything out of the ordinary, I take him into ER. His ordinary is not a typical ordinary as you well know but as Mom's we figure it out along the way. Glad he seems to be doing better -- he sounds like a great kid !!!

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    1. I wonder if we will ever bump into each other in the Akron Children's ER!!! :-) I'm with you-- if it is a breathing issue-- we are just heading straight to the ER. Nicky and croup sound so much like Joey's croup bouts. Did Nicky ever have his tonsils and adenoids out? Hope he is having a great summer-- am so happy to hear from an Ohio mama!!!

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  8. I have been the crazy mom and I have questioned myself so many times too. But usually crazy mom is right. I'm sorry he's not doing great now. Hopefully he'll be well enough to do the surgery soon. It sure would have been easier if they could have done it all at once with the eye surgery, but maybe that's just too much to recover from. T&As are not much fun for little ones or their parents. It's slow and sore. But we'll be wishing him a smooth procedure, and a smooth recovery.

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    1. Thank you!! I so want to cancel the next surgery, but I know it should help Joey. Ugh-- just not looking forward to the T&A recovery-- I have heard the same thing-- that it is long and slow-- thank you for your good wishes!! Am glad I'm not the only one who feels like a crazy mom at times! :-)

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  9. Hi Jenny,
    Not sure if you remember me - we went to high school together. You were an inspiration to all of us then and you are still an inspiration now! My life has taken me to Florida and I have not been the best about staying in touch with people, but when I read about your blog in the alumni magazine it brought tears to my eyes and I just had to write. In fact this is the first time I have ever posted on a blog so for some reason it is saying I am anonymous even though I gave my name. You are helping your son push through the hard times through your gift of writing. Your son has helped other children and you have helped other families. Best wishes to you, Joey, and the rest of your family!
    Jenny Bird

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