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.



This entry was posted in General Updates, Primary Congenital Lymphedema, The Medical Stuff and tagged , , , , , . Bookmark the permalink.

2 Responses to Sharing the Joy

  1. Thanks so much for this update, Nancy!! Haddie Joy is so precious!!

  2. Barbara Taylor says:

    Appreciate your update – I have been wondering how they are doing. While I don’t personally know this sweet little girl or her mommy, I have a very special spot in my heart for her daddy and I keep them in my prayers!

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