Haleigh's Journey

Behold, children are a heritage from the LORD, the fruit of the womb a reward. Like arrows in the hand of a warrior are the children of one’s youth. Blessed is the man who fills his quiver with them! He shall not be put to shame when he speaks with his enemies in the gate.(Psalms 127:3-5 ESV)

Friday, November 11, 2011

Cardiologist Update

Haleigh saw the cardiologist today and her ASD (atrial septal defect) has grown.  
Atrial septal defect (ASD) is a congenital heart defect in which the wall that separates the upper heart chambers (atria) does not close completely. Congenital means the defect is present at birth.  They now feel it is best to repair it before it starts to cause a problem with her heart function.  The Dr wants to talk to the surgeon to see if she is big enough to repair it with a Cath instead of open heart surgery.  If she is big enough (which he thinks she is) he wants it done before winter.  If she is too small he said we can wait until early spring to see if she has grown enough for the Cath.  If she is not big enough they will decide what to do then.  They would really like to avoid surgery so that they do not cause any disturbance with her development.  A longer recovery would mean a delay in her learning.  
He doesn't believe this is related to her growth so we shouldn't expect anything on that end of things but anything can happen.  Of course there are risks with this procedure as with any but they seem to be minimal.  He said one thing they worry about is if the patch will then cause her heart valves to not work properly.  If this happens they will have to remove the patch.  The other risk is the patch falling out of place and getting lodged in the heart.  If this happens they will have to open her chest to remove it.  
She will have to be put under anesthetic for this so the GI Dr may try to do a procedure at the same time.  She wants to check to see if her reflux has caused any severe damage to her esophagus.  Since she has to be under for this as well, she wants to avoid doing it too much.  

Tuesday, November 8, 2011

Growth Hormone

We started the growth hormone yesterday and it defiantly didn't go as planned.  We were told that she wouldn't feel it at all.  Well let me be the first to say, she did!!  She cried for a while after and i felt horrible.  But, this is something that can potentially help her so we have to do it.  
Today went a little better.  She still felt it but she didn't cry as much.  Hopefully as time goes on she will get better.  
We saw the physical therapist today.  She also has an extra session on Thursday to get some extra work in.  She seems pretty confident that Haleigh could be walking by spring.  I sure hope she is right.  She has been improving so much from week to week.  She is getting stronger and more confident with all of her movements.  With any luck the growth hormone will work and give her more muscle so that she can be stronger for walking.  :o)

Thursday, November 3, 2011

Update

The past few weeks Haleigh has been pretty sick.  She started vomiting again along with her ears and nose being yucky.  In the last few days she has not been eating very well so we decided it was time to take her to the Dr.  Last week we started her treatment plan that the Immunologist gave us.  So along with that, she was put on a stronger antibiotic and was also put back on zantac to help with the vomiting.  I hate all of these meds!  I am keeping her home from daycare tomorrow to give her a day to rest.  She is so tired right now.  
We got a phone call saying her growth hormone will be in tomorrow and the equipment for it will be in on Monday.  We will then get a phone call to schedule a home nurse visit so that she can show us what to do with it.  I am super excited about starting this.  Although i am not sure how i will afford to feed her if she is bigger!!!  She eats tons now!!  LOL
Hopefully it all goes well.