Ready to Roll.....California Bound!

Hello world!  We are here and gearing up for our big trip to California this week for Reagan's annual heart cath, (that happens to be 3 months overdue).  From the looks of this pic, you wouldn't believe she's getting ready for her 8th heart cath!

Rod, Reagan & I will be flying out early Tuesday morning to head to California.  This will be our first "cross-country" trip to Cali so, unfortunately, it couldn't be done non-stop.  Sure was nice catching non-stops out of Austin to San Jose-- Oh well!  Soooo..... praying for safe travels, on-time arrivals, catching connecting flights and baggage to arrive with us!  And, of course, for good health & great reports from the doctors in California.  If all goes as planned, we should be back on our cross-country flight to Virginia on Saturday.

Since my last post, Reagan was able to get her dental work (1 crown & 2 fillings) done "with flying colors", as the anesthesiologist put it.  We are hoping she handles the anesthesia just as well this week for her heart cath.

Also, Reagan visited the Opthamologist for the first time and found out that she has astigmatisms in both eyes and is a little nearsighted.  She had to get glasses and is taking it day by day learning to wear them for longer and longer periods of time.  Hoping they help and she grows used to them rather quickly.

Please pray for Nolan, as well, as he will be staying back with my dear college friend, Heather Farester.  Heather and I met in college, roomed together and are now living within an hr. from each other.  Her son and Nolan are 1 yr. apart.  Thank you Heather for not only feeding & sheltering my child but filling-in as his "homeschool teacher" while I'm gone. Makes it much easier to focus on Reagan during this time when I know Nolan is in such good hands!

I will update as we know more.  Tuesday is our travel day, Wednesday is her pre-op appt, & the cath is not until Thursday.  Thanks again for following us on this journey!

Winter=Stress....So Ready for Spring

Since Reagan’s 6^th Birthday, life has been busy.  The day after Reagan’s birthday she was able to go to and participate in Disney on Ice: Treasure Trove in Washington, D.C.  Minnie Mouse’s dad just so happens to work with Rod, and they set it all up for the whole family to go to the show and for Reagan to be in it.  It was a great experience for her and she did great!!  Here is a pic of her debut…..

On stage with Rapunzel and Flynn

Backstage at the Meet 'n Greet

February and March have been busy and stressful.  When Reagan got sick in January and spent 5 days in the hospital with a respiratory illness, her heart cath that was scheduled for Feb. 1 in California had to be postponed until March 1 to allow her time to get better.  She did get better, however, Reagan has some dental work that has been six months trying to schedule.  Back in September at her regular dental exam/cleaning, the dentist found that Reagan had two cavities that needed fillings.  Due to Reagan’s heart condition, she has to have dental work done in an OR with anesthesia in order to be monitored more closely. Our cardiologist (out of Walter Reed) has been trying to arrange this to be done at Children’s National Medical Center in D.C. but to no avail.  Knowing Reagan has this dental work that needs to be done, he did not feel comfortable sending her to California for her cath as it increases risks of infection going to the heart.  I then called and rescheduled her cath, once again, for April 18.  

Last week, the kids had their dental exam/cleaning once again and one of the cavities that needs a filling has gotten worse and now needs a crown.  Thankfully, our dentist was able to arrange a time at Children’s and to arrange anesthesia for the procedure for March 15^th.  Last Friday, we went for Reagan’s pre-op visit at Children’s for them to assess her and the situation to determine if they are comfortable going through with this procedure.  Just a little over a week ago, Reagan finished a 10 day round of antibiotics for some new respiratory thing that crept up on her back in late February.  Due to her having a cough left from this and her lungs still not being at optimal strength, they were leary of whether to go through with it on the 15^th.  Just last night (Wed), I got a call from the Nurse Practitioner who saw Reagan at her pre-op visit and told me they are going to go ahead with her procedure but that they would like her Pulminologist to check her out this Thurs. to make sure her lungs are in a better place than they were last Friday at the pre-op visit.  So………we will go see the Pulminologist on Thurs. (tomorrow) and if she gives us the green light, Reagan will go in Friday for her dental work.  Phew!!!  I never knew cavities and crowns could be this much trouble.  I am praying her lungs continue to improve and that she can get this done on Friday.  I have been so stressed over getting this set-up and worrying about her heart at the same time being overdue for a check-up.  I’ve pulled her in and out of school in an effort to keep her healthy, for heart caths & dental work for some time now, that keep getting re-scheduled.  She is so confused as to whether she is going to school each day or not.  Ready to get this behind us so we can prepare to “stay healthy” for her heart cath on April 18.  

Please pray that if the procedure does happen this Friday, that all will go well as she has to be put to sleep (i.v. & breathing tube placed) for the dental work.  In spite of all her doctor and hospital visits, the sweet angel plays “doctor” with her stuffed animals and babydolls daily.  She gives them “check-ups” and says she’s going to be a doctor one day to help people feel better :-)  **Note: her “check-ups” not only include the normal checking their temp, eyes, ears and throat, etc but she also places stickers all over their chest and tells them she’s doing their echo!! 

Happy 6th Birthday Sweet Reagan!!

Happy 6^th Birthday, our sweet Reagan Grace!!!  We love you soooo much!!  You are a joy each and every day and bring us laughter in the mundane day to day routine.  You always find a way to laugh and that laugh is very contagious.  We are so very proud of your accomplishments and how far you have come.  Mommy and Daddy hurt to watch you have to go through so much to be so little but you constantly amaze us at your strength!  You are our superhero!!

Feb. 15, 2013 in Birthday outfit from Mimi & PawPaw

We are truly blessed to be your parents and pray for many more years to be able to do that.  You’ve given us more gray hairs than we should probably have by now, but wouldn’t change it for the world.  We love you!

1st Birthday

2nd Birthday

3rd Birthday

4th Birthday

5th Birthday

Thank You God for such an amazing little girl!  She is our angel sent from Heaven and reminds us each day to be thankful in the little things :-)

Home Again....

Thanks for all your prayers during Reagan's recent hospitalization.  None of the tests/cultures ever came back with any pertinent info so we're assuming she just had a bad virus that hit her pretty hard.  Unfortunately, viruses affect Reagan pretty bad due to her DiGeorge Syndrome and of course, she always seems to get the ones that don't show up on test results.  Oh well, just thankful for all the nurses, respiratory therapists and doctors who got her through this last illness.  She was discharged on Friday afternoon on a 1/2L of oxygen and we have been home ever since just chilling.  Thankfully, on Saturday she was able to come off the oxygen and is doing good holding her oxygen sats in the upper 90's.

Enjoying coloring at home with no oxygen

Hopefully, now she can get back to some of her normal activities like playing with her friends

Playing Rice Table with her friend Ryan

"working out" 

Doing Pushups at a nearby workout park

Reading

Reading to her cousins Phoebe & Paige

And going to birthday parties

At her friend Macy's birthday party

Speaking of which, our Big Girl has her own birthday coming up next month.  

She will be turning 6 on Feb. 15!

As far as Reagan's heart cath in California, it has been rescheduled from Feb. 1 to March 1st.  We won't be leaving now for California until late February.  Hopefully, this will give her time to get her dental work done and celebrate a birthday before going to get her heart checked.  Praying those little vessels of hers are growing and getting bigger, and not narrowing.  

Until next time.....

Winter Blues....

I know it's been a long time since I've posted. We have been staying really busy in our daily routines.  We started back to school in the Fall. Reagan is in Pre-K again this year to give her a full year of social interaction with her peers. She has been doing great "coming out of her shell". She loves school so much & asked to go on the weekends :-)
I have been homeschooling Nolan, part of the reason I have not blogged lately. Between his school, baseball, Reagan's school & therapy schedule, we stay quite busy! All in all, she has been doing great.
We were able to fly home to Texas over the holidays & enjoy a long visit with friends & family. Since returning, Reagan has had a little setback which has landed her in the hospital. This past Sunday she spiked a 103 temp & had labored breathing. I took her to the ER on Ft. Belvoir & she was immediately put on oxygen, given an iv for iv fluids & a dose of Rocephin. She was tested for flu & strep but both came back negative. Initially, they thought she might have some kind of pneumonia but after looking at her X-ray, it appeared she had something viral. (*Not surprised, as viruses hit Reagan pretty hard due to her DiGeorge Syndrome.) A transport by ambulance was then setup to transfer her to Walter Reed in Bethesda, Maryland where they have a PICU to better treat her & where her specialists are. Upon arrival, she was admitted to the pediatric floor but overnight she required more oxygen support & was working harder to breathe so the next morning (Mon) she was taken to the PICU. We are still in the PICU now. Many tests & cultures have been sent off, none of which have grown anything yet. The PICU is basically supporting her needs & covering all the bases just in case. She is on 2 antibiotics, Tamiflu, several breathing treatment meds & high-flow oxygen at the time. She has been on 8L of oxygen but reduced to 7L this morning. Her lungs still sound real crackly but she's moving air & breathing more comfortably which is a good sign! Reagan is also starting to show me signs of improvement like wanting to eat, color, watch cartoons, etc. unfortunately, her lungs usually take a little longer to "catch up" so looks like we'll still be here a few more days.
A big thanks to Rod's unit for being so supportive & our friends in the area offering to help with Nolan. We truly appreciate it as juggling kids in & out of the hospital is a challenge in itself!
On a side note, Reagan is scheduled to have her next heart cath in California Feb. 1. Her cardiologist here is communicating with the drs at Stanford on whether to go through with that as scheduled or postpone due to this illness. Still waiting for an answer on that. Also, at Reagan's most recent dental evaluation, they found she has two cavities that need fillings.  She will have to have this done at Children's National Hospital here in DC for cardiac monitoring purposes.  This is another issue we are trying to work out scheduling for. We are waiting to find out if the Stanford team would like her to have this completed before or after her cath. She was scheduled to have it done this Friday but obviously had to cancel due to her hospitalization. So, at this moment, not sure if our trip to California is still on for now or not.?
As always, Thanks for all your prayers & support!!!