Bandages, Patches and Pleas!

Some of you have asked about Haddie Joy’s eye patch and her bandages. I thought I would take a moment to explain….

The eye patch is for something called ambloypia. Ambloypia occurs when the brain and the eye don’t work together. To make life a little easier, our brains compensate by favoring one eye, which decreases the vision in the eye not being used. To treat ambloypia, we patch Haddie’s strong eye, forcing her brain to use the weak eye, so that equal vision can be established. In Haddie’s case, she developed ambloypia as a result of strabismus (crossed eyes). Sometimes strabismus can be corrected with eye glasses, but Haddie’s will require more than one surgery. The surgery is noninvasive and loosens or tightens muscles which make the eyes move. Even so, it is hard to say if the eyes will stop crossing. Once our brains learn to compensate, often the brain will tell the eyes to cross.

The bandages are to treat her chronic swelling, called Primary Congenital Lymphedema. Each day we do a session of therapies referred to as Decongestive Therapy, which involves a type of unique, gentle skin stretching (massage indicates a deep tissue movement, which is not consistent with what we do) called Manual Lymph Drainage. MLD is designed to do exactly what its names states, manually drain or move lymphatic fluid throughout the lymphatic system. This is necessary because of the build up of this protein rich fluid can harden in the tissue if left too long, causing fibrotic swelling of the tissues. It can also be a breeding house for bacteria, if left untreated, and can quickly swell out of control creating breaks in the skin.

In addition to the bandaging and MLD, we also have on order compression stockings – so you will be seeing pictures of her wearing those soon!!! All in all, as scary as it was to learn of Haddie’s LE, we have been quite successful managing it, thanks to the AMAZING therapist we found at Vanderbilt Pediatric Rehab. Pediatric therapists trained to treat LE are few and far between so, she has been a true answer to prayer! Continue to pray for Haddie as she navigates motor development with heavier than normal limbs, it can make walking and crawling more difficult to learn. Please pray for mom and dad to fight the good fight and hang in there with the “work” of managing LE on those exhausting days.

I might also mention, LE and its management is not covered by insurance. It can, at times, make the challenges even more difficult to bear. Many of the parents I hear from, including us, pay out of pocket for all the bandaging and compression garments, and they are NOT cheap, and you can’t very well go without them! Many parents insurance will not cover the necessary therapy, either. So far, we have been able to get her to the therapy that she needs, but we have had to fight for it.

I haven’t particularity been good at finding out how to get insurance to pay for all the services Haddie needs. Appeals are not my forte, although I am trying. LE, along with the fact that she doesn’t qualify for any state programs (except Early Intervention), despite her delays, leaves us with many fears about the future. The problem lies with the fact that she does not have a “known” diagnosis. Without an overall diagnosis, linking her delays and other medical problems, she can not get the services which are available others with mental and physical disabilities. She only qualified for Early Intervention (praise the Lord that she did!) because she was diagnosed with Noonans at that time. I have hesitated to blog about any of these aspects of caring for Haddie, because I don’t want to sound like we are asking for money, because WE ARE NOT!!! We do not feel entitled to receive any help from the state, but the programs do exist for these very situations, when care requires astronomical resources. Right now, Haddie is getting what she needs, and almost everything I would like her to have. I do want to prepare and plan for her future care wisely. If you know of anyone out there that knows how to help with things like this, I would love the contact information! And please continue to pray! Jehovah Jireh has indeed been our provider, and I know He will continue to 🙂

Proverbs 3:5-6
5 Trust in the Lord with all your heart
and lean not on your own understanding;
6 in all your ways submit to him,
and he will make your paths straight

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3 Responses to Bandages, Patches and Pleas!

  1. Dawn Oaks says:

    I am thankful for answered prayers that care for Haddie has been provided for to date. I am also thankful that in God’s providence He supplied Haddie with you and Peter as parents. You are exhausted and may feel beat down. Inspite of this, you press on and fight the good fight until the finish line is reached as Paul beseeches us to do. It is not easy… as a matter of fact it downright stinks at times.

    Many times I ask God why He allows certain situations or why He led us down a path for a season in our lives that seems to no longer have relevance to our lives. It is generally because He will call it back into His service at some point. What seems like a lifetime ago, I completed my Masters’ degree in Health Administration and worked for both insurance companies and physician practices with regard to reimbursement practices. It has been more than a few years, but if there is a way of pulling stuff back out of the cobwebs of my brain to be of help to you and Peter in working your way through the maze of healthcare logistics I would gladly help in anyway that I can. Unfortunately, the system is set up in a way that will throw denials of care out for those that have more “costly” health needs hoping that some of the financial responsibility on the part of the insurance company can be eliminated. It is so unfair that the burden is placed on exhausted parents like yourself to have to pay to get care for your child. They are banking on this exhaustion and the complexity of the appeal process to discourage you from seeking financial support for future care.

    I will get off my soapbox for now. Please know that we are here in whatever way we can be of help. Our prayers continue to be fervent and our God great!! Praying that a “diagnosis” will come from the biopsy to maybe help with some of these administrative hurdles as well as give you some direction in continuing to care for Haddie. Praising God that on the very bottom line, she is a little girl that will never be short changed in being loved!!!

    • Wow Dawn!!! God really knew what He was doing when he connected us!! Thank you so much for offering your expertise and help. I need to sit down and make a timeline of events (appeals, etc.) and get a good run down of all that has been going on with her. WHEN I do that, I will be calling you for help with the rest! Thank you so much for your willingness to love our Haddie is such tangible ways AND for praying!!

  2. Nancy says:

    I will be praying that God will provide someone who can advocate for HJ or give you some guidance in that area. Love you all. Thanks for the update!

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