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!!