Immunologist

Haleigh's immunologist called today and told us she got her blood results back.  She said that Haleigh has low readings in her Complement system.  Her results came back at .2 where as the normal results are around 100.  She said this is the reason Haleigh gets sick so often and so seriously.  She is going to get us an appointment with her in August when we see Genetics. 
We are told the treatment is going to be antibiotics to try to keep things at bay.  I am not sure how this will work because I assume her body will get adjusted to antibiotics and they will no longer work.  I am sure she will explain more at her appt.
But for now we will take it as news.  If we can keep her from getting so sick so often, then i see it as a step in the right direction.

:o)

Grammies Visit

This weekend we got a visit from Haleigh's Grammies.  Grammy Deana and Great Grammy Sally.  And her Aunts Corrina and Brittany.  Even though it was crazy hot, we still did the DC tourist thing.  Friday we went into Arlington.  It was so hot we kept putting Haleigh under all the water spouts that they use to water the grass.  She was going with the diaper look and some wet hair.  By the time we got back to the car she fell asleep within seconds.  Saturday we went to the Holocaust museum.  Haleigh of course could care less about either of these visits but she just liked being with family. 
She had a great time with her grammies since they don't get to see her much.  She got to show off all of her new skills to everyone.  We put her bath tub out on the deck so that she could "swim" to keep cool.  This seems to be her new favorite thing. 
This morning she had to say goodbye after4 days of fun.  She will get to seem everyone back home for her birthday party in September.  I can't believe i am planning her 2nd birthday already.  Time has gone so fast. 

Physical Therapy

Haleigh had her first PT appointment yesterday and it was great.  The therapist is wonderful and worked really well with Haleigh.  She wasn't afraid of her at all.  It seems like when she was in infants and toddlers they were afraid of breaking her.  She did more in a 45 min session yesterday than she has done in a year of infants and toddlers.  Her therapist Jenny said she is on the road to walking but her leg and ankle strength is low.  She uses all upper body when she pulls to a standing position.  They are going to teach her to use her lower body and they also gave us some exercises to do with her to help.  We are going to see her every Tuesday, so hopefully a more regular schedule will help as well. 
She will continue with Infants and Toddlers, but they will work more on her fine motor skills instead of physical therapy. 
Hopefully we can have a walker by her 2nd birthday!! 

Orthopedics

Haleigh had her Physical Therapy consult yesterday.  They are very happy with her progress.  They sized her for shorter braces so that she can lift her legs better.  He felt like the old ones are too heavy for her to move around effectivly.  The new ones will only come to her ankle.  He is also sending her to weekly physical therapy.  It will be different then infants and toddlers physical therapy.  This is the real deal.  We will continue with infants and toddlers but mostly for Occupational Therapy.  She starts PT next tuesday.  The ladies that she will be working with sound wonderful. 
Since her speech is behind the Dr. also wants her to get a consult for an assisted communication device.  Basically it is a computer that she will be trained to used to communicate with us.  There will be a way she can say she is hungry, thirsty or whatever else they may want to put on it.  I think it will be interesting.  She understands what we say but she can't communicate it.  She gets so frustrated at times. 
Then the dentist.  Well that didn't happen.  The scheduling lady neglected to tell us that the Doctor that sees babies is not in the office we scheduled at.  So when we showed up they then told us that she needs to be seen in the other office.  Now I have to schedule the appt again.  Silly.

And the best news yet is this morning it got an email from her genetic counselor saying she tested negative for Cockayne Syndrome.  It is very bitter sweet news.  As much as we want a diagnosis, I didn't want that one.  Some of these syndromes are unbelievable. 

What a weekend!

This was such a wonderful weekend.  Saturday we took Haleigh to Philadelphia to visit Aunt Lyn and to do a little site seeing.  She enjoyed hanging out and sleeping in the park.  She did pretty good on the car ride too. 
Sunday she was helping me clean the house.  She decided the stairs in the living room was for rookies and she decided to take on the big stairs.  She did so well and we are super proud of her.  She got half way up and decided she was tired.  She also pulled herself up on the coffee table by herself.  She is learning so many new things.  Hopefully she will be walking soon.  I think she wants to do it so badly because most of the babies in her daycare room walk or are starting to walk.  She has seen so many babies come and go.  I think it is her turn now. 

We are taking her to her first physical therapy appt that is not with infants and toddlers.  Hopefully they will do a better job with her.  The appt is tomorrow so we will let you know how it goes.  :o)

4th of July Weekend

What a fun weekend!  Haleigh has been climbing stairs like crazy.  She acts all professional now.  lol.  She had such a good weekend hanging out and playing.  Josh took her to the mall Saturday so I could get some cleaning done.  Sunday we had a small cookout with some great friends. (Thanks Uncle D for driving in)!  We did some fireworks in our back yard too.  Haleigh had so much fun during the day. She didn't make it to fireworks though because she decided she wasn't going to take a nap.  Maybe next year!