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
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