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!!!

How we're spending our HOT D.C. Days.....

Hey everyone.  Hope you are all staying cool this summer!  It sure has been hot here in Virginia.  Thankfully, our apartments have a pool and our community we live in has an even bigger pool so that provides us some relief.  In fact, Reagan has become quite the fish this summer.  Although she is still swimming with her flotation vest, she is getting braver and braver.  She loves to jump off the side of the pool and go under then come back up.  She thinks she is so big!!

Both kids finished out their school years in mid-June.  Nolan finished 2nd grade and will be homeschooling next year for 3rd grade.  The school here is definitely behind what he was doing in Texas and we do not want him to fall behind so since I do have my teaching degree, Rod and I decided it would be best to homeschool next year.  I have spent my summer researching curriculum and preparing things for the upcoming school year.  He also will be taking two courses on Tuesdays at a local church that offers supplemental classes for homeschoolers.  He seems to be ok with it so pray for us as we embark on this new adventure.  

Getting a jump-start on homeschooling.  I am actually doing some Phonics & Handwriting lessons with Reagan this summer AND Nolan is doing Science & Handwriting.

Reagan, on the other hand, had a wonderful school experience the last two months she was able to go.  She was in a Pre-K class with only 6 kids and 2 teachers.  She absolutely loved it and came home telling us about her days with excitement!!  

Reagan and Mrs. Alf, her Pre-K teacher

Since she is 5, we attended Kindergarten Registration at the school Nolan attended but I quickly got butterflies and did not have a peace about putting her in a class with 25 students.  She has really made some great strides, socially, in her Pre-K class and to put her in such a huge environment in Kindergarten, we feel, along with her Pre-K teacher, that she would regress rather than progress.  We asked if she could do another year of half-day Pre-K to give her the social experiences for an entire year that she desperately needs.  The team at her IEP meeting all agreed, and she was granted a waiver to attend Pre-K again in the fall.  

Reagan and her friend Jackson who was in her class this year.

Reagan is soooo smart and is showing signs everyday of being ready to learn to read so I am planning on homeschooling her Kindergarten material in the mornings this upcoming year and she will attend Pre-K in the afternoons.  While she's at school in the afternoons, Nolan and I will have time to do his lessons.  We will re-evaluate her situation after next year and decide whether to go on to Kindergarten or stay home and homeschool 1st grade.  This buys us some time for her to development more physically and socially before going into a bigger class environment.  

As far as developing, she is a therapy machine.  She goes to Speech twice a week, Physical Therapy twice a week and Occupational Therapy once a week.  I really like the new therapy place she attends and all the therapists have been great!  She is already making great strides just in the last few months since starting here.  

Reagan's health has been good.  Other than her respiratory illness she had back in late April which hospitalized her for a week, she has been doing good.  Back in June, she ran fever for a few days and we were concerned she was coming down with something new but she eventually worked through it and got well, to which we are so thankful!  She has a cardiology appt. this Wednesday and is due for her next heart cath in January of 2013 out in California.  We are praying those little vessels of hers are growing and not narrowing and that her new heart valve is functioning properly.  I am so pleased with her cardiologist as he is a Colonel in the Army and the first time we met him he said he "knew" Reagan's heart surgeon in California.  He used to be stationed in Hawaii and they would send patients to Dr. Hanley from Hawaii.  God is good!  I was so worried about the new doctors and them not allowing Reagan to go to California for her check-ups but God worked it all out ahead of time!!  And, Reagan's pulminologist is married to her cardiologist.  How ironic is that!  When you have a heart and lung kid, it makes it nice to have both doctors in the same family.  I envision them sitting at the dinner table at night talking about Reagan's case--HA!  Just Kidding!!

Reagan also was seen recently by a GI doctor here at Ft. Belvoir.  Although Reagan has had her g-tube since she was 8 months old, she really hasn't been followed by GI regularly since she was a baby.  She had such bigger issues, with her heart and lungs, that we let the GI part of it slide to the back burner.  Thankfully, Reagan has gone from using the g-tube 24/7 for her nutrients to only having it run at night now while she sleeps for extra calories.  She does however, eat small amounts and not enough to consider getting rid of her tube so I asked the GI dr. about what can be done to try to work towards a goal of one day getting rid of her tube.  She started Reagan on Periactin, a medicine that stimulates her appetite to get her to eat more therefore supplying herself with enough nutrition without having to use the tube to supplement.  We have been using the Periactin for a few weeks now and it seems to be working great.  She stays hungry all the time.  It's like having a teenage boy in the house-  I never can fill her up!  I am praying this trend will continue and we might be able to start coming down on the amount we give her at night.  Her GI dr. said it is a slow process so it could be a goal we work on over the next year.  

Other than that, we have enjoyed having some visitors this summer.  We are so thankful for our friends, the Kostenckis, for coming to see us.  Their son, Caleb, turned 9 in June and wanted to see Nolan as his birthday gift so they made the long trip up!  

We enjoyed visiting the National Zoo with them while they were here.

Also, while they were here, Rod had to fly one night so we all went up to his work to watch him take-off.  It was a fun experience for all!

Pilot-in-Command Rod preparing for take-off

The crew watching nearby

It was a great week and the kids were sad to see them leave.   Thankfully, another set of friends is here this week.  In fact, Nolan knew nothing about it and they surprised him on Saturday.  The Thomas' have a son, Grant, who Nolan was in Kindergarten, 1st & 2nd grade with back in Texas.  

Nolan and Grant

Nolan has enjoyed spending as much time as possible with Grant this week.  

Nolan and Thomas boys at Arlington Cemetery

I just hate that it will all come to an end but thankfully, Grandparents (my dad and stepmom) will be here on Friday.  Hopefully, that will help take some of the blow of Grant leaving. 

Thanks again for stopping in and checking on us along this journey!  We enjoy hearing from all of you.  Oh, and come visit anytime!!  We'd love to see you and show you our Nation's Capital!