Tea Party

Reagan got to go to a tea party yesterday.  Her friend Alexis was turning 3 and celebrated with a tea party fit for cute little princesses.  Reagan seemed to enjoy the outing.  Here are a few pics from the big event:

With her beautiful hat she made at the party

It's tea time ladies!

Stirring my tea

Enjoying a light lunch

Last, but not least, a little playtime for the princesses

Thanks for inviting me to the fun tea party Alexis!

A Big Thank You!!!

So I'm reading one of our heart friend's blog and find out that last week was Cardiovascular Professionals Week and thought I guess I better mention some of our top dogs on Reagan's Cardio Team.  First of all, I want to say a big thank you to Children's Cardiology Associates in Austin, TX.

When I was pregnant with Reagan and many ultrasounds were being done to try to get a good look at her heart, one of the ultrasounds was recorded and sent to Children's Cardiology Associates for review.  They are the ones who, after reviewing Reagan's ultrasound, predicted she would have Tetralogy of Fallot with Pulmonary Atresia and MAPCA's and they were right on the money. 

The day Reagan was born, Dr. Gregory Johnson, was the cardiologist on call and therefore became Reagan's cardiologist from that day on.  I remember being in the recovery room after delivery, while Reagan was off being examined by the NICU team, and being worried about whether my baby was even going to survive or not.  Dr. Johnson came in with a heart drawn on a piece of paper and tried to explain to the new inexperienced heart parents the best he could about how Reagan's heart formed and how it functioned in comparison to a "normal" heart.  Dr. Johnson is a great guy and we are truly thankful for all he does for Reagan.  Every time Reagan has been hospitalized in Austin, whether he's on call or not, he makes an appearance and checks on us and Reagan.  Unfortunately, because of Reagan's many hospitalizations, all of the cardiologists at Children's Cardiology know Reagan because each of them have been on call at some point or another when she's been in the hospital.  They are all fantastic professionals and we appreciate what they do from the bottom of our hearts!!

Thank you, Dr. Johnson for all you do!!

Once we had been seeing Dr. Johnson for a few months after Reagan was born, it was looking like she was getting ready to have to have surgery soon.  Dr. Johnson sat down with Rod and I and explained that there are only a handful of surgeons in the country that operate on children like Reagan.  He then went on to tell us that our closest option would be a surgeon in Houston and that he had sent patients there before who had done fine but Reagan's success rate would be about 50/50 if we went there.  He then said BUT there is a surgeon in California that does this more than anyone and with Reagan's defect being so rare your chances at success are better with Dr. Frank Hanley.  He said, I realize it's hard on families to pick up and go to California and not all can, but after working with your family I felt it might be a possibility for you all and strongly recommend Dr. Hanley and will do anything I can to get him to take her case.  

Before having this meeting with Dr. Johnson, my mom being the strong grandmother she is, had already done some research on her own and found out about Dr. Hanley and had told Rod and I that we needed to go to him because he was the best and that she had already contacted them and that they did take our insurance.  I think I remembering telling her, "Thanks, mom, but just calm down and let's wait and see what Dr. Johnson recommends."  Well, when the words Dr. Frank Hanley came out of Dr. Johnson's mouth, I got goose bumps all over and knew that was God's way of telling us that he was the one who needed to do Reagan's surgery.  After telling Dr. Johnson we agreed to go to California, he worked a miracle and got us in with Dr. Hanley very quickly.  Now that we've gone to California so many times, we've learned that Dr. Hanley sees patients from all over and that his surgery schedule stays booked months in advance, and so we truly appreciate him fitting Reagan in somehow on that first trip back in June of '07.  From then on, we usually get a surgery date for our next trip before ever leaving because we know how far in advance you have to book with him.  

Dr. Frank Hanley, is an outstanding man with a heart for children.  I remember meeting him the first time following Reagan's first surgery.  I couldn't believe how calm he was talking with us after just coming out of the O.R. for such a long, intense surgery.  Of course, we did not want to keep the man any longer than we needed so we just said "Thank you very much for all you did." and let him go on his way.  I've now learned that when you see him after surgery, you may not see him again because he's so busy, so ask any questions you have then because you may not get another chance.  Even with that said, I still try not to ask too much, because it's usually after midnight when he comes out of surgery and I know he probably has another surgery the next day and as a mother want him to get some rest to be fresh for the next child he operates on.  In all reality, I get a weird sense about me, every time I see Dr. Hanley, as if being in the presence of a king, or royalty of some type.  I know it sounds crazy.  Rod evens tells me to quite lusting after Reagan's surgeon to which I laugh.  But, I've read so many other heart moms descriptions of how Dr. Hanley affects them as well and know it's not lust it's complete adoration for a man that's smart enough and willing enough to devote all his time and energy to saving your child.  It's a feeling you can't describe, only experience!!

So, from this mom and many other heart moms out there, we thank you Dr. Hanley for all you do.  I often feel sorry for his wife because I know she rarely sees him because he's always taking care of our children and for that, we love him!!

First Day of "School"

On Monday, Reagan started "school".  The homebound teacher from our school district came to our house to work with Reagan.  She will be coming every week Mon-Thurs for 30 minute sessions.  Reagan seemed to enjoy having Mrs. Melissa come to our house.  Here is a sampling of the work they did:

Working on our colors

Reading a birthday book

Thinking hard about an answer

and lastly, sorting bears

Reagan did a great job for her first day!  

We did not have school today because we had an appt. with her pulminologist in Austin.  Because the steroids seemed to help with her oxygen sats he felt no need to do anything further for now.  Here's some pics from her visit to the doctor.

  

Making sure her monkey is o.k.

Entertaining herself while waiting on the doctor

and lastly, thankful for a good report and stickers, of course!!

Happy Birthday Sweet Reagan!

Hey everyone,
I thought what better day to start a blog for Reagan than on her birthday.  I have kind of been wanting to do this for awhile but haven't taken the time to do it.  Today our sweet girl turned 3 yrs. old.  We cannot believe how fast time is flying by.  Her cardiologist said just the other day at an appt. how he remembers when she was just a baby.
2010 has gotten off to a rough start for us.  Poor Reagan got sick at New Year's and it took her a good 3 weeks to get back to normal.  We were able to avoid the hospital but after all her symptoms passed she was still having trouble keeping her oxygen sats up without the help of oxygen.  After a week on oxygen but no other symptoms, I called her cardiologist, Dr. Johnson, for him to check and make sure something wasn't going on with her heart causing the need for oxygen.  He did an echo and x-ray but all looked fine.  He passed the word on to her pulminologist, Dr. Scalo, who suggested we try a 5 day course of steroids.  After 48 hrs. on the steroids, she was able to get off the oxygen and has been doing o.k. without it ever since.  She has an appt. with him tomorrow, Tues. 16th, to see if he thinks she good or if he might want to do a CT scan but hopefully since she's doing better with her oxygen levels we will not need to do anything further.   In the meantime, last week the "Mucinex bug" invaded our house and we all developed strong coughs and yucky noses.  Reagan even spiked a temp of 101.9 the night before her birthday party but by morning she was fever-free so we continued on with the party.  She had lots of fun as you can see!

Birthday Girl-- I am 3!!!

Doing the hokey-pokey with her friends

Pinning the heart on the poster

Eating yummy pizza, cheetos and grapes with friends!

Opening her books-- we had a book exchange instead of presents because Reagan absolutely loves books and of course, we just had Christmas so no real need for more toys.

Cody showing off his book he bought for Reagan

A new dress from Nan & Pop...how pretty!

Instead of a traditional cake, Reagan prefers cookies so we let the kids decorate their own cookies and then eat them!!

Happy Birthday Dear Reagan!

A big thank you to all our guests who helped us celebrate Reagan's big day!!

              The little crew                                   The big crew           

       

and of course, my big brother!