Immunology and Genetics

Even though the earth quake happened during Haleigh's appointment, we still got some things accomplished.  We saw the Immunologist first.  She explained to use that Haleigh has an immune deficiency in her compliment system which is the area that takes care of her upper respiratory system.  She is missing the protein that responds to illness and tells the body where to fight infection.  They looked through every study they could find and could Not find a connection to her slow growth.  That is a bummer to us because now it is just another thing to deal with.  So, to help her out, the DR put her on a daily antibiotic.  She will take it for 6 months then they will change the type of antibiotic so that she doesn't develop a resistance to it.  This should keep her well.  If she starts to get sick she has a care plan we are supposed to follow beginning with 2 inhalers then a doctor call depending on the stage we are on.  Lets hope this keeps her out of the hospital this year.  

The Geneticist once again doesn't know what to think.  She has been communicating back and forth with the Docs at Children's Hospital of Philadelphia trying to figure out what they should do.  She will continue to look and call us if they know anything.  In the mean time they do not need to see her until she is 3 or unless the pediatrician sees something new.  Waiting is the worst part of all of this.  She has only gained a little over lbs in the last year.  

She will begin growth hormone in October so hopefully we can see some progress with her growth.  

Until we learn more we will continue with her therapy and hopefully have her walking soon.  

We follow up with GI this Friday as well to check her reflux meds. 
I will let you all know when we get more updates.  

I will be sure to let you all know if we get anymore updates.  

Physical Therapy update

Haleigh had her 4th PT appointment today and she is doing awesome!!!  They have been working on her motor planning and her core strength.  She really needs to learn to trust herself and know that she isn't going to get hurt when she wiggles.  She gets real uneasy when she loses her balance.  They stretched her hamstrings and worked on some upper body strength too.  She still holds her arms up like a small baby when they first learn to support themselves.  They said that Haleigh trusts this and never learned another way because it was working for her.  She needs to find her center of gravity another way.  She has improved so much since her first appointment.  
Tomorrow we go to pick up her new braces.  These ones will be a lot smaller and lighter for her so that she can learn to walk easier.  The ones she has now are too bulky and heavy so it is making it hard for her to move around.  They did a great job at getting her stability to learn to sit and to stand, and they also helped stretch some of her muscles.  Now it's time to retire them and move on to the next step.  She should actually be able to wear shoes with these!!
Next week we see Genetics and Immunology (both at the same appointment).  These Doctors are so wonderful to make accommodations to see her at one time instead of us waiting around.  And they can help each other out instead of us always relaying info.  I promise I will get some pics up soon!!!