Sharing the Joy

So for those of you following along with the great adventures of Haddie Joy, I’m posting this blog update because Brooke stays so busy with Haddie that she thinks about blogging, but she just doesn’t have time to gather her thoughts, remember her login information, and actually type out an entry.

Haddie Joy at the Geneticist

Haddie Joy

I’ve been able to accompany Brooke and Haddie to some of Haddie’s therapy and doctor visits so I see why Brooke doesn’t have time to blog. I have a whole new appreciation for parents of special needs children! Yet spending time with Haddie is a sweet blessing to me and I know that her story and sweet smile blesses you all as well. So, I’m just here to share the joy!

Happy 4th Birthday Haddie

Happy 4th Birthday Haddie!

Haddie Joy is 4 now and as her geneticist said at her appointment there last month, although Haddie’s multiple conditions negate any “standard” guideline to measure her progress, the good news is that Haddie is growing and progressing developmentally.

She is still being fed 100% through her G-tube, but it’s not formula anymore. She’s progressed to different baby foods, and now is beginning to get very carefully-selected pureed natural foods through her G-tube. Her exact calories, protein, sodium, and fluids are painstakingly measured to ensure that her diet supports healthy development and doesn’t cause swelling or harm to her kidneys. Something as simple as using frozen peas that have too much sodium in them has a significant impact on her. Choosing whether to boil or steam the veggies impacts the nutritional value and fluid content. It’s serious stuff, Y’all. Sometimes the doctors have different opinions on how many calories or what type of calories she should get based on their research and the cases that they’ve seen. It can be a bit overwhelming, but fortunately Brooke and Peter have a wonderful nutritionist that they trust to help coordinate that aspect.

As part of her speech therapy, Haddie gets what is called feeding therapy. You’d think that she’s just “playing with food”, but there is an important reason for it. Nobody knows at this point if Haddie will ever be able to eat food orally; however, it’s important to keep her exposed to foods — for her to touch and play with them, and to see what they feel like against her lips, to keep that window of possibility open. The doctors didn’t know if Haddie would ever walk or talk, and she does those things; so maybe eating food will be in her future. It’s definitely worth the time and effort to encourage an interest in food. So the next time you see a little one at a restaurant making a mess and playing with her food, just remember it might be feeding therapy!

Feeding Therapy

Haddie may not like the celery, but she’s hanging in there like a trooper.

In other speech therapy news, Haddie’s recent evaluation showed her to overall be speaking and understanding at a 2 yr. 4 month level. Yay! She can say over 100 words, uses some sign language, and is generally good at expressing herself. This reiterates the value of Haddie’s therapy appointments and consistent daily practice. Some children who don’t eat orally never speak or their speech drops off because of the lack of oral stimulation. Haddie might not jabber away like some children, but every word she says is music to our ears.

Haddie Joy

Haddie’s asking Mama if she has a boo boo like her.

Meanwhile, Haddie is making wonderful strides in physical therapy too. She can get up and down and walk around like a champ! The physical therapist works with them on what skills come next and techniques to improve Haddie’s coordination and balance. Haddie still needs to hold a hand to steady herself for certain things, but she’s in a developmental burst and doing lots of new things.

Physical Therapy

Working hard to step over the pole.

With her growing mobility and bravery however, she has taken a few falls recently so you may see her wearing a helmet to protect her noggin soon. She isn’t able to catch herself with her arms when she’s falling like most of us do so her head can take the brunt of the impact. Right now she’s sporting steri-strips and glue on her forehead because of a recent fall where her glasses dug into her face. Fortunately it isn’t slowing her own though!

Haddie Joy

All fixed up!

In occupational therapy, they work on her fine motor skills. Haddie loves to color, paint, do puzzles, and is working on stringing beads. Just like in physical therapy, they really pay attention to working both her right and left sides equally. Haddie’s lymphedema (swelling) is more pronounced on one side which makes that side a little heavier feeling and harder to use which means that it’s extra important that she uses that side to keep the fluid from building up and making movement any more difficult.

Working on a puzzle with Mom & Dad

Working on a puzzle with Mom & Dad

I’ll try to write more later, but I wanted to hit the highlights for those of you who have been praying for Haddie and her family and following along with their journey.

It’s not an easy journey, but I know that they would say that it’s a wonderful journey, that they couldn’t make it without God, and that they appreciate your prayers and support.



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Back Home

We got home about 3:30. She woke after surgery only off and on- crying and mad at us since we won’t let her scratch her eyes. She slept mostly until 5ish. After, she finally woke up and started showing off that smile again and wasn’t as uncomfortable. Now pray for no infections and that the surgery was effective! It will take a few weeks to know for sure. Even so, kiddos with delays often have a second surgery (over 70% of the time), and sometimes even a third surgery to find the right adjustment. An under adjustment is preferable to an over adjustment from what we were told.

Thanks again for prayers everyone! :))


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Quick Update

Dr. said it went well. Waiting to get back to recovery to see her. Might not have time to update until later tonight.

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Surgery today


I wanted to take a minute and ask for prayer for Haddie today. She is having surgery in a short while on her eyes to correct the strabismus (crossing).

We have very specific requests:

1). For the IV to be easily assessed
2). For her post op swelling to be normal and to quickly subside
3). That the surgery would be effective
4). Also pray for a young patient with cancer who just finished up an eye surgery and who is having trouble with her port, don’t know who she is, but God does!
5). Pray for all of these wonderful providers as they care for these precious babes today!

She will be going back in about 45 minutes to one hour.

Love you all and thank you for the prayers!!!




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Hello 2013!

Hi everyone! I wanted to send out a quick little update. It seems like we always send updates when Haddie’s got some major health things going on, but this time I wanted to let everyone know how great she is doing!

We had a wonderful Christmas! Here is a picture in her Christmas Eve dress with her beautiful sister, Shaylea….

2012-12-24 05.58.53

It was so fun to have people over and for her to be so interactive with everyone. It was a nice change up from the past few holidays when she has been sick or timid with people.

A highlight from the evening came when she received a special gift from her Uncle Gene – a handmade wood table, specially crafted with removeable chair arms for when she is stronger!

Haddie Joy enjoying her two favorite presents; her baby and table!

Haddie Joy enjoying her two favorite presents; her baby and table!

I had no idea she would react to the table like she did. It was priceless!

She is really a big girl now. She wasn’t “in” to opening the presents this year, but just like most 2 year olds, she loved the paper and boxes more than most of her toys!

The most wonderful gift this Christmas was to watch her and realize how much she has grown.

Here’s a little of what she has been up to…

She is practicing standing.

This is my friend, Swoosh.  I'm teaching him how to stand. :-)

This is my friend, Swoosh. I’m teaching him how to stand. 🙂

She even took a few steps on the treadmill last week!

Haddie working out!

Actually, I think she would like to skip straight to jumping, but we have explained to her she has to work really hard to build her muscles to do that. It’s wonderful that she is exploring with her legs and making step like motions with her feet. We have a long way to go, but she is really growing stronger all the time!

Since her 2nd birthday she has been using the big girl potty some! She can give us about 5 signs and tries to mimic several more. She laughs when she is tickled and is not above acting very “two” sometimes;) This is particularly true when it’s time to really “work” on some of her exercises. She can really give her therapist a hard time!

She wasn’t sure how to take Peter when he sat her down and had a “talk” on how she would have to do her exercises if she wanted to be able to walk. He’s the typical Dad, and she is the typical Daddy’s little girl. I’m not so sure she was too crazy about this shift of expectation.

Truthfully, she is very happy. She is creative. She is smart. She is funny. Oh, so funny. She looks down at us over those glasses when she is trying to whip us into shape, which she is very good at I might add. She must’ve gained this skill from her Gratti. Truly, it does remind me of my mom when she does it.

Oh, by the way, we had to get new glasses…we went for purple this time…

2013-01-02 20.05.11

All in all, her blood work is very good right now. Her swelling is down, which is a wonderful perk to Winter. This allows Dad and I a break with some of the decongestive therapy. Can I get a “Heck yea!”? It also gives us a chance to work more on the fun things; like communication, eating, walking/crawling and PLAYING! She has regressed some in her feeding therapy, but is making small strides even so. She has been able to get a few of her vaccines and her flu shots. This was quite a relief to me! We still can’t really take her out around a lot of people, but we are getting there!

There are still lots of financial battles, but we continue to learn to take it all in stride. It is so totally worth it to see this smiling face everyday!

Beautiful Princess

All in all, things are very well right now. We are living – fully living. We are so grateful that God has and continues to meet all of our needs. We will be fundraising soon, so keep your eyes peeled for a facebook page and other events to help our Haddie! I know my posts are few and far between, but it means the world to us that you all care! God Bless and HAPPY NEW YEAR!! In 2013, I pray the Lord may shine His face upon you and be gracious to you. I pray that He will turn His face toward you and give you peace! (Numbers 6:25-27)

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Happy 2nd Birthday to Haddie Joy!!

Happy 2nd Birthday to our beautiful Hadassah (Haddie) Joy!


I can hardly believe it has been two years since I first laid eyes on our miracle from God. I’m overjoyed that God has given us a magnificent reminder every year of what He is capable of, just a week before Thanksgiving.

“Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us, to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen.”
. Ephesians 3:20-21

Haddie is a daily reminder to me that God desires so much more for me than what I often settle for. My prayer is that I, we, remain in Him, daily dying to our own fleshly comforts and ambitions by drawing on the Life Giver’s power which will strengthen us in our weakness, lighten our burdens, and be a feast during a time of famine.

Again, “according to the power that works within us, to Him be the glory..” in darkness or in light “..forever and ever. Amen.”

May it be so!

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Blessings, the Divine Kind

The kidney biopsy results are in, the doctor called it “bad news”. Haddie’s kidneys are not looking too good. She has quite extensive damage. 60% of her kidneys are not useful, and the other 40% are abnormal and will continue to deteriorate over time. Basically the type of damage they found is typically very progressive. The children who have it usually go into end stage renal failure around the age of three. At this point, dialysis is an option, as well as a kidney transplant. The really great and encouraging part about all of this is, a transplant usually licks this! After some thought, this is what we heard – Haddie Joy has bad kidneys, we can fix it. That, my friends, is GOOD NEWS!!!

I also think it is worthy to mention that there is nothing usual about Haddie. This kind of kidney damage is fairly rare. They are looking at case studies of children, who have had this type of kidney damage, and they will base treatment options largely on that, but I can assure you there is no case study they can look at, that is just like hers. So…..basically it is up to “God and Haddie” as her nephrologist (kidney doc) so eloquently put it. In other words, Haddie might do well another 10 years with her kidneys. Based on what he saw, I think this would probably be a miracle, but hey – we have seen those before, right??!!!

It looks like a family/friend donor will be the best route to go. Peter and I will start the screening process in February. The first part of the screening process will require only bloodwork. The best match will then have a cat scan to assure there are indeed two kidneys and that the blood vessels around those kidneys make a good candidate for removal. The donor will be in the hospital 5 days or less, and miss a few weeks of work.

God continues to teach us a lot as we walk this journey. I have been through a plethora of emotions. I was excited to finally hear a “fix”. I was troubled at some of what I’ve read in relation to her specific type of damage. I fear the future and how we will manage it all. I was angered at a friend for telling me that God would be there and provide all of our needs, when in times past, I have felt that needs have gone unmet. I didn’t want to hear the truth she shared… may not either, but we need to hear it. I need to hear it.

Here it is.

God cares more for my spiritual condition than my having an easy life. (Gasp) It’s true. He wants me to long for Him. Believe in Him. Need Him. I am betrothed to the God of Creation, and He doesn’t want to share me. He doesn’t want me to yearn for things that will break my commitment to Him, that will sow seeds of unrighteous abandonment in our covenant ground. He wants me to continue in His words, be His disciple, and be set free. (John 8) He wants me to sow seeds of righteousness in our covenant grassland; the lasting kind. See, what we know, what we see, what we understand – it dies. It fades. It is there, then gone. Abandonment is not a bad word. It can be a word we live by. It is our reasonable sacrifice. (Romans 12) The John 8 woman knew it, did she not? When people looked at her, they saw – scum. What Jesus Christ saw – reckless love; a pleasing sacrifice. A prized possession poured out at His feet, washed with her tears and stroked with her crown of glory. She laid her crown at His feet and wept. She laid down every part of who she was for something she did not see. Something she could not touch.

Blessings, the divine kind.

They aren’t just a result of a productive day. They aren’t just sunshine and breeze. They aren’t just smiles and laughs.
They come during the waiting for what’s been told. They come on the knees. They come when you are prostrated, laid out on that covenant countryside; that place that is yours and His. They come when you are uncomfortable, weak, poor, and without hope from mankind.

At times, the covenant ground, which was once seen as bountiful and abundant, appears to be consumed by drought. All understood to be beautiful, withers; the fragrance which once was worn as a garland has been spent, broken and emptied over that Carpenter’s feet. In the absence of perfumed decoration there lingers a reminder of barren ground which we long to have filled with new growth.

Sometimes, when I find myself in the desert ground, I become mad. I become discontent. I want to know why it doesn’t feel good. Why it smells. Why it is hard. If I stay mad and discontent, I often find myself asking infertile questions – Why did I plant my soul in a man who died a felon’s death?

Isn’t this Christian life supposed to produce stuff? Good stuff? Blessings?

I read.

Isaiah 66:1-2
Thus says the LORD,
“Heaven is My throne and the earth is My footstool.
Where then is a house you could build for Me?
And where is a place that I may rest?
“For My hand made all these things,
Thus all these things came into being,” declares the LORD.
“But to this one I will look,
To him who is humble and contrite of spirit, and who trembles at My word.

I learn; blessings don’t always feel good, or smell good.

The earth is His footstool.

Truth sprouts forth; seeds of righteousness rise and give birth to attributes of Deity.

Seeds planted because of His sacrifice. Increase I have because… He waited; because He CHOSE to get on His knees; because He, CHOSE to be uncomfortable, weak, and poor; because, … “although He existed in the form of God, did not regard equality with God a thing to be grasped, 7 but emptied Himself, taking the form of a bond-servant, and being made in the likeness of men. 8 Being found in appearance as a man, He humbled Himself by becoming obedient to the point of death, even death on a cross.” Phillipians 2:6-8

Blessings, the divine kind; they are not just what I once thought.

They are the result of brokenness poured out at Jesus’ feet. The chance for God to be who I depend on to bear each day; a need I would have never experienced outside of the reality we are living. Oh what joy to spill my worth and wash His feet when life is hard. What joy to experience growth in barren ground and the sweet scent of knowing Him in every place – hard or not.

My prayer going forward – that I would never again forget or be angered that He is all we need.

2 Corinthians 2:14
But thanks be to God, who always leads us in triumph in Christ, and manifests through us the sweet aroma of the knowledge of Him in every place.

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