Big update

Wow i realized it has been a while since we have given an update.  Haleigh is doing pretty well.  She is ready for Christmas and can't wait to be home to see family.  This month she has been accepted into the NIH Rare and Undiagnosed Diseases program.  I am really hoping this will be our answer.  She is doing pretty good with the growth hormone.  She still doesn't like the shot every night but we do our best at making it ok.  There really is no way to make it fun.  She likes to put the meds back in the refrigerator when we are finished.  She seems to have a much bigger appetite.  We should know in January how much weight she has gained since starting.  
She is doing great in Physical Therapy as well.  She got her progress report yesterday and it is amazing to see her progress written on paper.  She had only began to pull herself up on things when we started.  Now she is beginning to cruise.  Her therapist is hoping she will be walking or attempting to stand alone by spring.  Fingers Crossed!!!
Through a friend we found a wonderful girl with a wonderful charity.  Her name is Madison and she hand paints shoes for children with Cancer and other life long disabilities.  She does such an amazing job.  She did a pair of shoes for Haleigh.  Pictures are posted below.  If you know a young one in need of a smile or would like to help her cause you can visit her blog at www.peachsneetfeet.blogspot.com
She does absolutely amazing work!!
Our family would like to wish everyone a very Merry Christmas and a Happy 2012!  

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.  

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)

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.  

Endocrinology

Today we took Haleigh to see her Endocrinologist.  Everything is in place for her to start the growth hormone.  The FDA requirements are small for gestational age with no catch up by 2.  Since she is still very small they are going to file the paper work to get her started.  This should take about 1 month.  A home nurse will come to our house and show us what we need to do.  It will be a shot every day for 6 days and 1 day off.  For the next year she will have to get frequent blood work to make sure her levels do not get too high.  She will also have her size and bone age monitored.  Right now her bone age is at a 1 year level.  
What they hope will happen is that she will use the hormone more efficiently than she is now.  The doc said she is semi-resistant to it so they hope that with having more available she will be able to receive more into her body.  Right now her blood work shows that she is producing normal levels but she is pretty much wasting it.  
It is generally a safe treatment.  Her levels will be monitored every 3 months so that they can make any adjustments to the dose.  If she does not show a response to it, they will stop the treatment.  
The next few months we have a ton of appointments.  All of her follow ups come around in November December and January.  It is going to get crazy but maybe it will help winter go by fast.  :o)

2 year well visit

Today was Haleigh's 2 year well visit.  She is now 14 lbs 3 oz and is 27 inches long.  She is still in the << 3 percentile but any progress is progress.  Dr. Chaney was very happy with her progress.  When she was evaluated, her social and cognitive level is her highest at a 18-20 month level.  Her speech is a 12-15 month level, and her motor development is about a 15-18 month level.  She is still very behind but she is always improving.  They will not worry until she stops making advances.  
The best part of the news is that we can start to transition her into the toddler room at daycare.  We will talk to the director and see if they will do a slow transition.  Maybe a few hours a day until they get her up to a full day.  The toddlers are still big compared to her so as much as I want her to move, i also want her to be safe.

Happy Birthday Baby Girl

Today is Haleigh's second birthday, and what a bitter sweet day it was.  I can hardly believe she turned 2.  I am super proud to have her as my daughter and honored that God trusted us to look out for her.  I was a little bummed that i had to work today but she got to spend her day with her daycare friends.  I went over after work to join her and her friends for a small party.  I took cupcakes to celebrate.  
When we got home Daddy made her a special family dinner.  We all ate together (which is hard to do because of Daddy's job).  She went for a quad ride with Daddy.  OMGosh she loves her quad.  She just finished up opening 1 present (her party is Saturday) and we had a chocolate chip ice cream sandwich with 2 candles for her.  
It was a hard day knowing that we couldn't spend it with family.  Not only the ones in Pittsburgh, but also the ones that we have lost.  
I hope she feels special today.  We love you so much Haleigh!  WE are so proud of you!  xoxo

And it starts!!

So here we are.  It is September 18th(not even officially fall) and Haleigh is getting sick.  She started getting congested this past week so we got out the nebulizer and started her albuterol treatments.  Today she is getting worse, so now we are starting the treatment plan from the immunologist.  We started her on an inhaler.  She will use it 2x/day for 10 days.  If she doesn't get better we will call the doctor and get her antibiotic increased.  She is still taking her daily antibiotic which is supposed to help keep infection from starting but it is not enough to get rid of it if she gets one.  Fingers crossed that she doesn't have to see a doctor.  I really hope this treatment plan works.  

Back Home Birthday Party!!

Can you believe she is going to be 2 at the end of the month?? YIKES!  We went back home to B-town to celebrate with our family.  She had an absolute blast!  We would all like to thank everyone who came out to celebrate her life with us.  It was so great to see family!  
She got to spend friday with her cousin Jessica.  They are 6 months apart in age.  They had such a good time playing with Aunt Corrina!
Josh and I are so happy that she stayed healthy all weekend.  I guess the plan is working! I have attached some pics for you to enjoy!

My American Girl Doll!

Riding the quad with Daddy!

Playing with Cousin Jessica

I blinked!

Yummy!!

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!!!

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!

New Things

My little girl has been doing so many new things recently.  At daycare she gave up the high chair and started sitting at the table with the big kids.  They even had to put her in a high chair today because they didn't have enough big chairs, and she cried until they put her at the table. 
Today she climbed the 3 stairs in our living room all by herself.  She has been trying to pull up on things for a while.  She always gets halfway there and then she stops.  Today she did it!! 
And....As i was typing this I went upstairs to check on her and she fell asleep without her pacifier!!  It was buried in her toys. 
We are so proud of her! :o)  <3

Hearing Test

Haleigh had her hearing test this morning.  Because of the type of test it was (ABR) they had to put her to sleep.  They needed total silence during the procedure.  She did really well.  They said she passed the high frequency portion of it.  They were unable to do the low frequency test because she woke up and they can't sedate her a second time.  She said to just follow up with the ENT in 6 months and they may be able to do the low frequency test right in the office if Haleigh will play along.  So now we have to see a speech therapist to try and get this girl expressing herself in words.  :o)   <3

More Doctors

Today Haleigh had an appt with the ENT to check her ear tubes.  All went well.  Her tubes are still in place so she is set for her hearing test on Saturday.  With this test she will be put to sleep and they will measure brain wave response to sound.  The doctors know that she can hear but they are not sure how well she can hear because her speech is so delayed. 
Josh also took her to radiology to get her bone age test done.  Since she will be starting growth hormone in October they wanted to have a baseline bone age.  She will be tested periodically throughout her treatment. 
After all of this craziness Josh took her to Toys r Us and spoiled her as usual.  She got a pink bouncy pony.  She loves it. 

The rest of vacation

We were having a lot of problems with the internet connection on vacation so we couldn't blog anymore while we were there.  The rest of the trip went great.  Haleigh is really a water baby.  She loved the ocean and the pool.  It was very windy this year so we couldn't keep her near the ocean very long.  She gets cold very easy. 
We took her to hold a real baby tiger and a baby monkey.  I have the pictures posted on my facebook page.  
We had to leave on Friday to make our way home.  We left early expecting to make a few stops because she HATES riding in the car.  But, Josh and I are so proud of her because she made the 8 hour trip with 1 stop for food and side of the road diaper change.  She did great!  Surprisingly she only slept for 15mins of the entire ride.  I was expecting her to still nap and to fall asleep around bed but she decided she didn't want to do that. LOL
Now that we are finally home we are getting life back in order.  She did really well at getting back to her routine. 
Josh will post some pictures soon!

Day 2

Even though Haleigh went to bed late last night she was still wide awake at 6am.  This of course made for a pretty grumpy day.  She didn't want much to do with anything.  She actually fell asleep on the beach.  We took her up to the condo for an early nap which lasted 3 hours.  She really needed it.  We just got back from dinner and she is laying in her bed talking to Tilly.  She will hopefully fall asleep very soon.  She is cutting a few teeth too so she isn't very happy about that.  Tomorrow morning we plan to go collecting sea shells for her jars.  Every beach we take her to we put the shells and some sand in a jar and lable it.  Hopefully it will be something she will keep forever. 

Trip to Raleigh NC/Myrtle Beach Day 1

As some of you may know, Haleigh does not travel well by car.  So in order to make our 8 hour trip to South Carolina a little less stressful, we made a pit stop in Raleigh North Carolina.  We spent the afternoon in the pool of the hotel which Haleigh loved!  I will post a few pics for you to enjoy.  This morning we woke up early and started the last 3 hours to Myrtle Beach!  She did so well on the trip.  We were in the home stretch with about 53 miles to go and Haleigh decided she wanted to blow poo from her diaper!  EWWW!  We had to stop on the side of the road to clean up.  It was everywhere and she didn't seem to mind at all!  Silly girl!  After clean up we finished the ride in and met up with my brother and his family.  Haleigh was super excited to see her cousin Jessica.  When you see the pictures, keep in mind that Jessica is only 6 months older than Haleigh.  This will give you all an idea of how small she really is. 
Day one was so fun!  We took the girls to Build A Bear.  Haleigh adopted "Tilly the Tiger".  He is now the newest member of our family.  She is cuddled up next to him right now.  After Build a Bear we came back to the condo to get settled in a bit then we took the girls to the beach.  Haleigh is definitely a water baby, as soon as we put her in the tide pool she ate a fist full of sand and didn't seem to mind. LOL! She didn't stay in the water very long because she gets cold very easily.  After swimming cousin Jessica was feeding her in her exersaucer!  Yummy!
It seems to us she had a very fun first day.  She just went to bed at around 9 which is VERY unusual for her.  She passed right out of course. 

We are having trouble uploading pics right now.  The connection isn't very good.  We will post them as soon as we can.

Ice Cream Sandwich

Haleigh got through daycare yesterday. She has a slight fever and was still in good spirits as always!!! After dinner Amanda and I were out on the deck and Haleigh and I decided it was a good time for an ice cream sandwich. I think she enjoyed it!!!

I hope it isn't happening

Amanda took Haleigh into daycare today and Haleigh lost it!!!! To the point that Amanda couldn't even calm her down. I saw Haleigh as they left this morning and she was her talking self and sharing her PACI with me. Amanda said she did ok on the ride there but was trying to go #2 and was crying because it always hurts her so she was all teary eyed and the dam let loose on her nose too. Amanda thought Haleigh felt warm to her when she dropped her off but I hope that with the crying and pushing to go to the bathroom Haleigh was just warm from all of that.  The dr gave her a medication to help soften it up which helps out. I have not heard anything just yet and it is now mid day so I am hoping Haleigh is not getting sick. We are set to head for Myrtle Beach on Saturday morning. This is going to be a great time for Amanda and I to relax with Haleigh and family. We were in Ocean City for Mothers Day and it was a disaster. Haleigh had the worst sinus infection ever and was not enjoying herself. I hope Haleigh will be HEALTHY and have just as much fun as she did last year. Hear are a few pics from last year!!!!!

Lake Tobias

We took Haleigh to Lake Tobias Wildlife park yesterday.  She had so much fun with her friend Elliot, Uncle Chris and Aunt Liz. She got to see Lions and Tigers and Zedonks! A Zedonk is half Zebra and half Donkey.  It is the coolest animal.  She went on an animal safari and she got to see Buffalo, Deer, Texas Longhorn, Elk, Llama and so many different types of big birds. These animals came right up to the bus!  The Elk even tried to eat the cover on the bus!!!
Then we took her into a petting zoo.  She made best friends with a little baby goat.  She got so excited every time she saw him.  She did so good all day with a very small nap in the car on the way there.  Haleigh even sat in her stroller ALL day for the very first time. We are hoping she will continue this because at some point she will out grow the carrier. She started passing out in the stroller a the end of the day.  It didn't take long for her to pass out when we left.  I hope you enjoy the pics from Lake Tobias!!  :o) 

Stages

First, i am glad people can still follow, even though i can't see who you are.  For some reason the widget never seems to work. 
So this week Haleigh has decided she wants to start crying any time I leave her.  It started with bedtime.  She always fell asleep on her own, and recently she has been flipping out when i put her down.  Now when I leave her at daycare she does the same thing.  Its so sad to see her upset little face when I leave.  I suppose this will pass too.  I just hope sooner than later!

Crazy Weekend

Haleigh seemed to really enjoy the long weekend.  It was nice that she wasn't sick for once.  I think the heat got the best of her yesterday tho.  She was in bed super early and had a rough night of sleep.  She has been pretty fussy all day, but I think she is cutting her bottom pointer tooth.  Let's hope!  She wanted nothing to do with being alone today and everything seemed to really upset her.  I know when she doesn't feel well she just wants to be with mommy (which is ok with me)!!
We have a lot of awesome pics from the weekend.  I am sure Josh will have them posted later.
Josh also got her Almond Milk today.  We are trying some different things with her since she still seems to be vomiting a lot.  She was tested for allergies (which she doesn't have) but we were hoping the almond milk may help her little tummy. 

Memorial Day Weekend

Yesterday we had a cookout at our house.  We had over a bunch of wonderful people including Haleigh's new friend Elliana!  She is the most precious little girl and a true miracle to her family as well.  She was born with a heart defect and will be undergoing her second of 3 surgeries on June 8th.  This beautiful girl and her family will be in our prayers.  Haleigh and Elliana are 2 medical experts in the making!  With the looks they give each other, some day i feel like they will be a couple little rascals together.  Haleigh loves having someone her size around.  
Josh had a good time playing with the older kids and other dads.  I think the dads may of been having more fun.!!  Our angel fish of 5 years finally got a name.  Elliana's big sister Aubrie named him Orial.  It's a keeper!!  I just hope I spelled it right!


Overall it was a fun day with a lot of food that i ate way too much of!!   Haleigh enjoyed some chocolate cake herself.  I think by the looks of the picture she liked it.  

I hope you all enjoy your holiday weekend!  

Haleigh in her garden