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!

Settling in....

As Dora says, “We did it!  We did it!”  We traveled up & over the state of Texas, through the states of Arkansas & Tennessee & finally made it to the hills of Virginia.  The kids and I, along with Aunt Kay, made it to Virginia on March 11.  Aunt Kay was kind enough to stay for almost 2 weeks to help take care of the kids while I unpacked our boxes.  It has been 4 weeks since we arrived and we are settling in to our new “home away from home”.  Reagan still asks when we’re going back to our “orange home” in Texas.  (Our house there is a reddish orange brick.)  HA!  

Nolan was able to take the whole first week here to relax and settle in, then he began his new school.  He attended 2 weeks and then got another Spring Break this past week.  He will start back on Tues. and finish out the year.  During our first week here, we were able to go downtown DC and see some of the sights. 

Here we are riding the Metrorail system for the first time.  

We spent the afternoon seeing the sights of the National Mall (Washington Monument, LIncoln Memorial, World War II memorial, etc).  

I can see it now... President Reagan with a campaign slogan of "Don't Worry, Be Happy"

Nolan at Lincoln Memorial

It began raining, so we decided to take our adventure indoor and saw part of the Museum of American History.  It was a great experience and we hope to get to see more of our Nation’s Capital while here the next few years.

Visit to Vietnam Memorial

As far as Reagan goes, she is blossoming into a spirited little girl.  She is still quite the little munchkin weighing in at only 29 lbs and is only 36 in tall.  When we first arrived in Virginia, everything was in bloom here and she definitely noticed.  She sounded like a rattly washing machine.  We quickly got set up with a Case Manager at the Ft. Belvoir Community Hospital & she has been wonderful at helping me maneuver through this transition.  She was able to get Reagan in for an initial appt with a pediatrician rather quickly.  We met with the new pediatrician a little over 2 wks ago.  She was a civilian pediatrician who works on base and was very professional, understanding and kind-hearted to this “nervous” mom.  She listened to my needs as a mom of a special needs child as well as Reagan’s needs.  And, she wrote out prescriptions for a steroid as well as an antibiotic, just because it was a Friday, and didn’t want me to get stuck needing either over the weekend-  now that’s my kind of doctor!  Reagan ended up doing the 5 days of steroids and now sounds much better.  We still have the antibiotic on hand, but hopefully, will not be needing it.  She also put in referrals for all of Reagan’s specialists (Cardiology, Pulminology, Immunology & all her therapies) as well as GI, Dietician & Developmental Dr.  

So far we have seen the Pulminologist & will have appts with Cardiology & the Dietician before the end of the month.  All of the chronic kids here at Belvoir are referred to Walter Reed (a.k.a. Bethesda Naval Medical Center) up in Bethesda, Maryland.  It is about an hour drive (depending on traffic) or an hour & 20 min. Metro ride.  Some of these specialists come down to Ft. Belvoir monthly to see kids for appts. but since we were trying to get in quickly for an initial appt. we did have to go up to Walter Reed.  So, last week, due to the timing of her appt (3pm) we rode the Metro from just near our apt. to Bethesda.  It really was not bad and beats sitting in this HORRIBLE traffic around here.  I was quite pleased with the facilities and the doctor.  However, after meeting with this great Pulminologist, he tells me it’s his last week because he’s retiring for the second time.  He was wonderful and complimented me on dealing with/surviving with a child with such complex medical needs.  He did give me a # I could reach him at for the next several weeks in case I needed something before seeing the new dr.  He suggested switching Reagan from daily breathing treatments to daily inhaler treatments with a spacer.  Reagan’s pulminologist back in Texas wanted to do this as well, but Reagan was not quite ready for the inhaler.  The dr. at Walter Reed provided us with the spacer and had Reagan try it out as well as wrote her scripts for the inhalers for it.  He also got an xray of her lungs while there so they can have a baseline “well” xray to go by.  Reagan’s baseline xray is not normal so it’s good for them to have one on file of her lungs when she is well to compare to when she is “not so well”.  He asked about her eyes as well.  Reagan always has red, itchy eyes and I’ve always chalked it up to allergies but despite her taking Singulair daily and during the pollen seasons, Zyrtec as well, her eyes still bother her.  So, he wrote a script for Patanol, an allergy eye drop.  I mentioned her nose bleeds to him and he said something about the ENT there could cauterize the vessel in her nose but I told him the ENT in Texas did not want to do that because it would involve putting her under anesthesia.  He said the ENT there is great and he would talk to him about other options for Reagan to try to deal with her nose.  I got a call from the Pulminologist this morning & he has already discussed Reagan’s case with the ENT and feels he can help her without having to put her to sleep. Not having to deal with her nose bleeds as much would be great because we have discovered it is quite windy here in Virginia which only dries her nose out more.  I will be calling and getting that appt. set up in the near future.  Since seeing the Pulminologist last week, Reagan has done great switching over to the inhaler with spacer and it’s less maintenance for Mom, which is always great.  We will see as the weeks go by how her lungs handle the switch.  I am hoping they like the switch and we do not have to go back to the nebulizer.  (If so, if any of my heart friends need Pulmicort, I have plenty on hand, I could share).

Next week, on the 17th, we will be headed back to Walter Reed to see the Cardiologist.  I am praying that visit goes as well as the one with the Pulminologist. 

In other news, the day after Nolan started his new school, I was able to meet with the Assistant Principal & Special Education Lead Teacher about Reagan’s situation and options for Kindergarten next year.  They were quite receptive and helpful and willing to work with us.  As Reagan’s endurance is not that of a regular 5 yr. old the school team in Texas had mentioned she might need modified school hours.  Since she turned 3, she has only had Homebound services provided, due in part to all her medical things we were dealing with at the time.  Now that her heart is fixed and she seems to be doing better medically, Rod and I are ready to let her try school again as she is quite the social butterfly and would love the interaction with other kids.  It will be a trial and error process and pray she does not get too sick where she is not able to attend.  In the meeting with the Assistant Principal & Sp. Ed. Lead Teacher, they were quite willing to deal with modified school hours and said they have done that in the past for other children.  In prep for that, I asked if there was any Pre-K in the district and come to find out the only Pre-K provided by the Fairfax County Schools is for kids who are delayed in more than 2 areas, which Reagan is.  I was able to observe the Pre-K and meet with the Pre-K team before deciding if we wanted to let Reagan try that for the remainder of this school year which goes until June 18.  I was very impressed by the program and the setting (only 6 kids with 2 teachers)- a great first school experience for Reagan!  The kids seemed to be at her level cognitively so it would be a challenging environment for her both socially and mentally.  So, the big news of the day, is that Reagan is starting school today.  Yep, today is the first day back from their Spring Break up here so a great time for Reagan to start.  She will go today from 12:30-3:45 and eat lunch there, go to library weekly, play on a special playground just for the Pre-K and Learn, learn, learn, which she loves to do!!  It is a half-day program 5 days a week.  We are hoping if she does well with this than maybe in the fall she could go to Kindergarten for longer hours.  She is very excited and has been talking about it ever since we took her to the school to meet the teachers.  She got a new lunchbox and is ready to go!  

Please pray a hedge of protection around my baby girl as she begins this new adventure!! Her teacher called me yesterday to talk and make sure she was all set to go today.  She also said the kids were studying butterflies before Spring Break and their caterpillars had hatched over Spring Break & turned to butterflies so Reagan will get to see the butterflies today!  How  ironic, as my baby girl is leaving her cocoon and spreading her wings to fly off to school!!  We are so proud of how far she has come!

Waiting at the bus stop for Nolan

Lastly, our awesome big brother Nolan deserves some attention.  He is doing great in his new school, Lane Elementary.  I met with his teacher and she spoke highly of him and how sweet he is.  He is meeting friends and having new experiences of his own.  He started riding the bus home from school just before Spring Break (something he’s never done before) and will begin riding it to school tomorrow.  He also started his baseball season over Spring Break but his coach quickly noticed he was well advanced beyond the 7-8 yr. olds he was playing with so she suggested he move up to the Minors league (9-10 yr. olds).  

He even made the Sports section of the Ft. Belvoir paper

He had his first practice with that team, the Mets, last night.  Rod also works with a guy whose son plays travel ball & set up a tryout for Nolan.  Last Friday night, he tried out and did AWESOME!!  He then was assigned to play with the Mt. Vernon Patriots, a 9-10 yrs. old travel baseball team in the area.  He is quite excited and loving spending so much time on the ball field.  This, of course, keeps us all quite busy but makes the time go by & not focus on missing his friends in Texas so much.  : (

Thanks for checking in and now that both my kids will be in school, hopefully, I will have more time to blog and keep everyone updated on our family!  We love and miss you all in Texas!!  

Goodbye Temple...We love you!!!

Well, this is going to be short because it's late and I still have more to do to prepare for our big day tomorrow.  D-day is finally here!  Tomorrow morning the kids and I will head out from Temple, TX on our 3 day journey to our new home in Virginia with Daddy.  We are very saddened to leave all of our friends and family but know that in today's world we can "keep in touch" a lot better through technology.  Please check the blog for updates not only on Reagan but our whole family.
We had a lot of "last times"this week which were no fun but glad we were able to have them.  We will cherish our last 7 yrs. spent in Temple forever.  Plus, plan to come back here to "retire" in 3 yrs.  That's right, after our time in Virginia, Rod will be just 3 yrs. away from retirement!!!  We have already decided Central Texas is where we would like to be.  That means this is only a temporary goodbye for now : )
Here is a glimpse at our last week in Temple:

Eating with Rod's side of the family

Eating out with friends

Reagan with Ms. Donna, her Physical Therapist

Last Day with Mrs. Lauren, her Occupational Therapist

Reagan on her last day with Mrs. Melissa, her Homebound Teacher

Nolan's last day, with his 2nd grade teacher, Mrs. Villarreal

Nolan with his best bud Grant

Nolan with his Kindergarten teacher, Mrs. Sims

Although we'll be in Virginia the next few years, our hearts are with all of you!!  

We love you,

Rod, Jen, Nolan & Reagan