You Can Help!!

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This sweet family has helped our Haddie Joy with lots of prayers and love. Now, it’s time to help them! Ryan, Jeri Lynn and their three boys have been faithful to the Lords calling on their life to adopt these two precious angels from the DRC.

Ava Joy (7) & Zoey Grace (4)

Today Ava and Zoey officially became a part of the Owen family!

If this picture made you smile, do The Owen Family a small favor and head on over to this site, choose The Owen Family picture and click a heart! This small action will help them bring Ava Joy (7) and Zoey Grace (4) home! They have six days to reach their goal of 1500 hearts!!

To learn more about this amazing journey and what the Lord has done in the hearts of the Owens, check out their blog.

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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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Last Cincinnati Update!!!

Look who’s heading home!!!

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Cincinnati Update 7

Okay, she’s done! We aren’t with her yet, but they should be calling for her soon.

One of the team mentioned we must be living right to have gotten in so early, to which I replied, “There is a lot of prayers going up for her.”. To God be the glory!

Everything went very well. The IV access was the toughest part. The surgeon chuckled as he told how these highly trained specialists rigged it for the procedure. Haddie Joy is such a stinker!!!

It won’t last long, and they weren’t able to get the blood sample they needed for genetics, so getting samples of what we need will be discussed later today.

Other than that, her kidneys were a little deeper than expected because of her normal swelling, an inch and a half deep to be exact. They got four samples of kidney tissue. The pathologists on the team are satisfied that we will likely need no more. I think they, and us, are all anticipating what information these studies will uncover. We won’t hear for a few weeks on some of the results.

There appeared to e minimal bruising/bleeding, so all is well on thy front.

They just called us, so I must go see my baby…..

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Okay, so we had a bit of wretching and getting sick, but we have calmed down now.

I’m happy. I have a very funny IV, it is sticking out of the bottom of my foot!!! That it’s gonna stick around long! I am plying with Daddy now. Keep praying, these crazy people taking care of me think I’m gonna be on bed rest for 10 hours!!!

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Cincinnati Update 6

You guys are good pray”er”s!!! She is already back and is probably already asleep now.

IV praying time!

We met the surgeon this morning and he is great! Great team working with her.

We will do our best to keep you all posted! 🙂

Here is a picture from this morning.

A little bit of bed head and a lot of cuteness going on…

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Cincinnati Update 5

Our boring day has gone well!

Haddie decided to baptize her IV in a tub of bath water. She was going to have her biopsy done in a procedure room, but the anesthesia team feels it is safer to be in the OR because of her airway issues. This means she is an add on, and is likely to get in for her biopsy at who knows what time, which means she can have nothing by mouth potentially from 3AM- until tomorrow afternoon. This made the IV a little more necessary for IV fluids. BUT, looks like we will be able to skip an IV, wake her up at 2AM and feed her.

They won’t try another IV until tomorrow when he is already under. This also means no bloodwork necessary at 4AM! Yippee!

It was a blessing in disguise, the catheter was out anyways when we untaped the IV. Haddie knew how to take care of that!!!

Anyways, she’s back in her pink. No IV, no gown necessary!

Pray for fewer emergencies tomorrow! She will get in quicker and be able to eat sooner, and less kids will be hurting! It’s a win and win!

Thanks so much!!!

Oh, and I’ve been meaning to show you all this or awhile…..

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Cincinnati Update 4

Last night was great. We all slept very well. We are in the transplant floor and everyone here is great. They are all going above and beyond to meet Haddie’s needs.

She has tolerated all meals perfectly so far!

Boring day today, which is code for a great day! She will have bloodwork drawn at 4:00 AM, we will meet the doctor performing the biopsy at 6:00ish AM. Biopsy at 9AM.

The bloodwork will not be able to be drawn through the IV, so she will have to wake up to a blood draw at 4AM. Her vitals post biopsy will be every 15 minutes. All of this can be difficult for Haddie with her SPD, so pray she will recover quickly.

Thanks everyone!

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