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Beginning to find "normalcy"

4/23/2016

6 Comments

 
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We were cleared for another three months! I can't really begin to say how blessed we are at times. Andrew has been hospital free for almost a whole year now! Anyone that's followed Andrew's page for long knows how many times we've had the unexpected ER trips, coupled with long hospital stays. It's great to tell those that ask how he's doing to say, "Well, he's doing well!" and "We've been out of the hospital almost a year!"

The only obstacle we are facing right now is his eye palsy they just found at the eye specialist. The eye specialist has us patching daily for 2 hours, so that his brain will not stop using that left eye. With it being paralyzed, the brain can eventually "learn" to stop using that eye because it can't see out of it, and he could go blind in that eye. We are anxiously awaiting the results so we can get somewhere with what to do to correct this. We are hoping to get him in May 3rd for the MRI to see what's going on in his head and if it was caused by another stroke. they cancelled on us a month ago because he was sick. They wont put him under while he's sick. While they have him sedated for that, the cardiologist is going ahead and doing the chest MRI to get a good look at the anatomy of his heart (The Glenn, second surgery portion that was done) and see how it is doing.

We have the Fontan, the third open heart surgery, looming over us as he gets further and further out. It's usually done between 2-4 years old. We are trying our best to get his weight up so he's big and strong for surgery.

He's in bi-weekly physical therapy now and he's doing great. He's standing in the middle of the floor without assistance, but still hasn't worked up the nerve to walk or take any steps just yet. He's in weekly speech and feeding therapy. He makes small steps forward, and then small steps backwards with feeding. He does not like anyone or anything coming to his mouth. He is still batting spoons away and refusing to eat. It is harder since he's hooked up to the feed pump 22 hours a day. Who would want to eat if they're being fed 22 hours a day straight?! We'll get him there though!

We are seeing GI every 3 months for feeding, Hematology every 3 months for the clots and blood disorders, cardiology every three months for his heart condition, and of course the therapies (PT and feeding). We stay pretty busy, but we are making great progress! We are hoping to eventually cut down on some of his medications as he gets older, but as of right now Dr. Sallee had to go up on his blood pressure medicine (it doubled!) and GI has started him back on Reglan for the gut/motility issues. For Andrew to have been knocking on death's door last year, he has made leaps and strides to be where he is now. When you walk in every three months to a cardiologist's office that once winced every time he walked through the door because of so many ambulance rides from clinic...to seeing a big bright smile...it's relieving! :)



6 Comments
Linda Parsons link
4/23/2016 09:28:42 pm

Thank you so much for your updates of Andrew. He is just the cutest little boy and I love his smiles. I pray that the issue with his eye is something that can be resolved. I thank God for answered prayers as all I have to do is read about how well Andrew is doing. God bless you and your family. <3 <3

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Chasity Rhodes
4/24/2016 08:26:08 pm

Thank you Linda! We are very blessed for how well Andrew's been over the last year! We are also praying for good results with his MRI's! We are so lucky to have such wonderful people keeping our little boy in your thoughts and prayers!

Reply
Mitsy Mocklin
5/6/2016 01:10:54 am

I stumbled across your blog tonight while doing some HLHS research and I'm so glad I did. I'm 34 weeks pregnant with a baby girl who also has HLHS. Your story really hits home because I've felt the same fears and had the same doubts and questions and emotions that you had. It's 3am and the front of my tshirt is soaked from all the tears i've cried from reading your story. I hope I can handle the demands that will be placed on me for the next few years. I'm so glad your sweet Andrew is doing better and that there truly is a light at the end of this tunnel.

Reply
Chasity Rhodes
7/7/2016 09:20:42 pm

Mitsy,
You will find an inner strength when the long, hard days arise. Always always pray and look to God for strength...He gave me strength on days I had none. You were chosen to be the mom of a very special baby, and I know you will do great! Please feel free to contact me if you have any questions or if you need someone to talk to on those bad days. :) Sending my prayers for you all.

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Charlotte Murphy link
7/7/2016 07:24:27 pm

Blessings to you and your family! Four children is difficult enough, even if there are no medical issues. I had five very normal children in an 8-year period, and feel like I barely survived with some of my brains intact. How on earth do you keep up with the monetary demands?

Reply
Chasity Rhodes
7/7/2016 09:17:10 pm

Charlotte,
It's been a true adventure. We have our good days, and some not so good days, but God always takes care of us in some way. The monetary demands have been great, and my husband does his best, and we've been blessed to have help throughout the journey from family, friends, and sometimes strangers. God created something within me that He knew Andrew would need one day. It's not easy, and we have lots of crazy days, but Andrew has touched my life in a very special way. :)

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    AUTHOR:

    My name's Chasity Rhodes and I have been married to my husband Shaun for ten years now. We have three little girls and a very special little boy! We are your average goofy family who has always been huge on spending time together. We wouldn't have it any other way! Follow us through our journey with our son (who was diagnosed with HLHS).

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