Monday, February 10, 2014

Miracle Boy!!

What a wonderful trip to Wisconsin and Illinois we had! 
I'd love to share all about it - but I know that most of you
are waiting to hear what happened with our doctor visit.

So, I will start there. 

and we will start with Hagan. 


When it was time to talk about Hagan,
Dr. Pauli said to Hagan,
"okay, Miracle Man, it's your turn…
 he leaned into me and said,
"How did this boy survive for 5 years before he came home?"
of course I have asked this many, many times over the past 11 months -  
but to hear my fears from Dr. Pauli was too much! 

"And you know that had you not brought him home 
when you did -
he would not have survived much longer."

I am still shaking and in tears as I type this. 
I can't imagine this world without Hagan! 


#1
Hagan's sleep apnea has even Dr. Pauli nervous.
He wants another sleep study done with his CPAP -
his is thinking that he will actually do much better on a BiPAP machine.
Hagan's stats are very scary, and life threatening.
His heart is working too hard to help his lungs work correctly,
and could cause heart problems later in life 
if not taken care of now. 


#2
Dr. Pauli was impressed with Hagan's spinal compression surgery,
and thankful for the urgency that Dr. Sklar took with him.
Dr. Pauli did not have the newest MRI (post-op),
but had Dr. Sklar's notes - 
and agrees that Hagan needs to have a second surgery 
for the compression. 
It looks like that the soft tissue is now causing compression on the spinal cord.
Dr. Pauli should get a copy of the actual MRI to confirm but 
it looks like Hagan will be having another HUGE surgery soon.
(Would love prayers starting now for this surgery!) 


#3
Kyphosis!
Hagan's lower back has Kyphosis.
Which is common in Achondroplasia Dwarfs,
but Hagan's is bad! 
It is causing the fatigue and pain that Hagan experiences when he walks.
He gave us a few suggestions for his car seat,
and booster seat at the house,
but recommends stroller or wagon riding often,
and surgery when he is 10 or 11. 
So, until then, we will make accommodations for him. 


#4
Hagan's legs.
Hagan has bowed legs but also, his bowing causes his feet to turn in,
and he is almost walking on his ankles. 
Any leg surgery will not help his feet, 
in fact, may be worse on his feet -
so - we will wait on his legs…
gotta get his apnea, and spinal compression taken care of first. 


So that is where we are at. 
Blessed beyond belief that Hagan is home with us!
Almost a year ago we traveled to bring him and Griggs home - 
I want again thank y'all who have prayed for us,
donated financially to help us bring these boys home,
encouraged us through this journey,
friends who helped us with this important trip to Dr. Pauli!
And new friends who encourage us daily! 
Hagan has a long road ahead of him -
we are thankful that we get to help him down this road!


4 comments:

Shonni said...

We love your little miracle man and will be praying for him. I am so glad that you have a good team of dr.s!!!

Shonni said...

We love your little miracle man! I am so glad that you have a good team of dr.s. We will continue to pray for you all.

itrustobey said...

I'm praying... I loved him as the wise man and I am glad he had a wise doctor, you for a mom and most of all our wonderful Savior.
hugs
Sharon Manning

Jackie Foster said...

Praying now for Hagan's upcoming surgery. He will continue to be a little miracle with our awesome God in control. So glad that you had a great trip and that Griggs is doing well.

Jackie

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