Our Little Miracle

It's been a month since updating.  I've wanted to update sooner but it seems my life never slows down long enough to have uninterrupted time in front of the computer to do an update.  So here it goes....
Reagan is doing fantastic.  After getting out of the hospital back in September she continued to have a yucky cough and her lungs were really rattly but at her last pulminology appt. her dr. had us try a new bronchodilator, Foradil, to use with her breathing treatments & it has made a remarkable difference.  Reagan has used Xopenex or Albuterol since birth and I was having to give her extra treatments with not much luck.  Since starting the Foradil (which is a longer-acting bronchodilator) her lungs sound so clear.  Amazing, the difference.  Hopefully, these results will continue on into the yucky fall pollen season and winter months.  Winter is a time we heart moms dread with our little ones as they seem to be sicker but we are praying for a hospital-free winter.
Our other major thing we are still dealing with is her blood clot.  I continue to give her twice a day shots of lovenox.  Poor baby is bruised all over from the shots as they are an anti-coagulant so cause bruising.  I will be so glad when I do not have to give them to her anymore.  Back in September when the cardiologists reviewed her case, the hematologist overseeing the lovenox pushed for them to wait and give the lovenox more time to work on the clot before going in and placing a stint to try to open the vein that the clot is in.  The cardiologist agreed and so we are continuing the shots through Oct. 30 and then will have a time off before re-echoing the clot to see how it looks on Nov. 12.  After that echo, the cardiologist will decide whether to leave it alone or pursue further measures.  The hematologist did tell me that she believes it's been there long enough now that a layer has probably formed over it and "trapped" it to the side of the vessel therefore leaving a small chance that it could be dislodged.  I think as long as it is not obstructing too much flow through that vein to the heart and as long as no other clots form we will be able to leave the clot alone and take no further action.  Or so I pray daily.  I am ready to be done with this and let her enjoy her childhood for once.
She is coming along so well in all areas.  She is a  walking now.  Or should I say she's been walking for awhile now but perfecting it these days.  My back is so thankful that she can get herself from room to room now without having to be carried.  It is a wonderful thing until...she's missing and I cannot find her- ha!  She is on the move these days.  Here is a video of her walking through Bed, Bath & Beyond the other day as I shopped for a pillow for daddy.









She does still tire easily and cannot walk for long distances but we are working on building her endurance so she can keep up with her peers.  She continues to do gymnastics once a week and loves it! It is truly great for her muscles and her confidence.  Coach Melissa is great and very patient in helping Reagan to accomplish the tasks during class.  Thank you Coach Melissa!







Reagan also goes to a swim lesson once a week with Miss Britney.  I think this is the third month of swimming and she loves it.  She is no where near being set free in a pool but again the whole routine of it is building her muscles and it's something she enjoys doing so we continue on.  Thankfully, it's an indoor facility so she will be able to continue through the winter.  Thank you Miss Britney for working with Reagan.







In addition to moving and grooving these days, she has become quite the little talker.  She still goes to Speech Therapy twice a week and now is working more on articulating her words correctly.  Wow, a year ago she didn't have but about 15 words to articulate-  ha!  Amazing how awesome our God is bringing this little one sooooo far!  She is a walking, talking miracle!!
Her teacher, Mrs. Melissa, comes to our house 4 days a week for 30 minute lessons.  Although, it is only 30 minutes, Reagan is learning so much.  She now has 9 letters that she can recognize and is most proud of R for Reagan.  She now picks out R's all around her world and says "R for Reagan".  She was sitting in a little person sports chair in the backyard recently watching Nolan and I throw football passes to each other when I hear her say, "Mama, look, R for Reagan".  She had spotted the R in the small circle on the chair for the registered trademark sign.  She amazes me daily at her progress.  I hate that daddy is missing so much but try to video and take lot of pictures to keep him updated.  She will be ready for sure for our first official family vacation when daddy does come home.  I ask her daily to please be mama's girl today and daily her answer remains the same, "No, daddy's girl!"  We miss you daddy.  Stay safe and strong!!

Home Again, Home Again....

Well, we're finally home from the hospital.  Reagan was discharged this morning (Wed.) and we were home a little after noonish.  She remains on oxygen and still has a yucky cough which brings up thick mucus.  We're hoping in the next week she can clear those lungs out and be able to finish off this bronchiolitis and do away with the oxygen.
Originally, Reagan's cardiologist had scheduled an MRVenogram to be done outpatient yesterday.  Since we were in the hospital they went ahead and did the procedure.  This was so that they could get a better look at her blood clot and make sure there were not more clots higher up in her veins.  She did have to be sedated for the procedure.  I was able to go into the procedure room and stay with her while they put her to sleep with a gas mask.  I then had to leave.  Mom & I waited for about 2 hrs. for a procedure they said would take about an hour.  I finally was able to go see her in the recovery room.  She was none too happy to be there but was glad to have mama.  Unfortunately, they had to intubate her for the procedure but was able to take the tube out immediately after.  Later that day, her cardiologist, Dr. Johnson came by her room and gave me the results of the scan.  It appeared that there was just the one blood clot--thank you Jesus!!  He is going to bring Reagan's case up this Friday when all of the cardiologists have a conference to decide if we should give the Lovenox shots more time to try to deal with the clot or go in through a heart cath in the very near future to place a stint in that vein to open it up.  Hopefully, I will know something before laying my head down Friday night.
Reagan will follow-up with her pediatrician this Friday, hematologist on Monday, and pulminologist in 2 weeks.   We appreciate all your prayers and support through this journey, as always!!!
Here are a few pics from the last few days:

Me speaking at Women's Conference day before Reagan went in hospital

In ER @ 7am with Reagan Sunday morning

Reagan in her room coloring after being admitted

Reagan with her vest on getting ready for a breathing treatment. 

(We told her she looked like her daddy with his vest on in the cockpit)

Getting her breathing treatment while the vest "shakes" her lungs to break up all the yucky stuff

Heading to her MRVenogram on Tues.  Poor baby, she had no idea what was coming, 

she was just so glad to be getting out of her hospital room

That's wraps up this update, I'll keep you posted on what the cardiologist decide to do about the blood clot. 

In the Hospital Again....

Sorry, for not updating in awhile.  I had meant to do a big update to tell how good Reagan has been doing over the past month but have been busy preparing for a speech.  I spoke at my mom's church Sat. Sept. 11 at a Women's Conference on the Legacy of Motherhood.  In my spare time, I have been preparing for that which was this past weekend and then had planned on doing a good update on Reagan today but things have changed.  While we were at my mom's house this weekend she got sick, or should I say worse.  She has been really rattly, junky, & wheezy sounding for about 2 weeks now.  We did a round of steroids at home and extra breathing treatments but to no relief.  The junkiness continued in her lungs and work of breathing while doing activity.  No fevers though so I had kept her home.  Early Sunday morning around 4am, I awoke at my moms and felt of Reagan and she was burning hot with fever.  I had already decided I was going to take her in Monday and make someone see her and find out what all this junkiness was about.  Being about 2 1/2 hrs. from Austin at the time worried me with her junkiness, work of breathing and now fever so I awoke Aunt Kay & decided we better take her to the ER.  Aunt Kay had gone with us to my mom's to watch the kids while mom & I attended the Women's Conference on Sat.  So around 5am, Kay & I headed out from Whitney and headed to Austin, I actually made it in a record 2 hrs. driving with my flashers on.  Thank you God for not putting any cops along our path.  In the ER, she had 101.6 fever.  They did a chest x-ray which to my surprise didn't look much different than her baseline x-ray.  They decided it's probably a viral bronchiolitis but with the fevers, drew labs to make sure there's nothing bacterial going on.  They also admitted her to watch overnight.  Once moving to the floor Sunday afternoon , they decided to put her on a little oxygen, she's only on about 1/5 L of oxygen but has brought her oxygen sats from 88 to high 90's just with that little bit of O2.  She also ran a little more fever Sunday afternoon in her room but none overnight.  Overnight, she did however, threw up about 3 times and hasn't had an appetite this morning.  She has done alot of coughing and has begun to cough up some thick mucus which she had not until this point brought anything up yet.  The pulminologist suggested using the "vest" on her during her breathing treatments while here but doesn't see a need for it at home. She used it for the first time this morning, it's meant to help break up congestion in her chest.  She did really good with it.  It's quite loud and shakes her whole body but mom & I told her how big she looked in the vest and that daddy wears a vest when he flies.  She smiled and thought that was funny!
For now, we are just hanging out and watching her closely to  make sure the fevers don't return and nothing grows from the blood work.  So far, so good.  Will try to keep you posted.  Hopefully, they'll just watch her for a day or two more and then we can go home.  Praying she only gets better from here on and not worse.  Thanks again to everyone for your prayers and support!

Going Home....

Well, today is supposed to be our last day here at Dell Children's.  Reagan will receive her last dose of i.v. antibiotics at 5pm today and then we will be discharged.  She will unfortunatley have to have oral antibiotics at home for another 2 weeks but at least it will be at home.  Other than starting the i.v. the first night, I think Reagan has enjoyed her time here.  Seeing that she feels fine and all, we have gotten out of the room many times to go on wagon rides (her i.v. is in her foot so she hasn't been able to walk since Thur. night). 

getting all settled in Thurs. night before getting her i.v.

hanging out by the waterfall with my new crown

checking out all the water features here at Dell

enjoying her food trays

Yummy Cream Cheese & bagels

giving herself a breathing treatment

having a sucker party

finally, relaxing & watching her favorite movie, Toy Story

I'm not even sure if her blood culture that grew salmonella was real or not but the infectious disease dr. did say she had one other child that this happened too and they treated her the same way as Reagan and she was fine.  I'm thankful Reagan's team of caretakers heir on the side of safety for her because we would not have wanted the salmonella to spread and make her really sick.  I was able to retreat home Friday to go to a doctors appt. myself and spend some one on one time with Nolan.  I tried to get him to go to a movie with me and out to eat but he preferred Chuck E. Cheese instead so that's where we spent our date night. 

Mimi & PawPaw stayed with Reagan Friday night and then I relieved them on Saturday.  Thank you so much for helping out.  Also, thanks to Warren & Lori Kostencski for having Nolan spend the weekend with them so I could come back to the hospital on Sat.  I'm sure Nolan had much more fun with your boys than he would have in the hospital.  Thank you so much!!! 
Well, Reagan has her follow-up appts with cardiology and hematology on Tues.  The cardiologist will probably do an echo and check on the blood clot and then the hematologist will do a lab draw to check Reagan's lovenox levels and discuss how long of a course of these shots she will have to do.  Hopefully, a shorter than longer course as she is bruised all over from the shots and has only been on them a week now. 
Lastly, when we were in the hospital in California, we met the LaPointe family- baby Arden's parents.  Reagan fell in love with Arden and played with her big brother Elliot at Ronald McDonald House. 

Arden LaPointe

Arden has spent the majority of the time in the hospital since her birth with only a short period of time at home.  Please pray that the doctors can decide the best treatment for her heart so that she can be able to go home with her family. 

Unfortunately......

Reagan had to be readmitted last night (Thurs.) to Dell Children's in Austin.  Because she had the positive blood culture from Sunday that grew salmonella (go figure on that one) the Infectious Disease docs felt it better to treat it as real given the fact that Reagan is such a high risk patient and is immune compromised.  Although she has no outward signs of being sick, if the culture were real they would not want the salmonella to invent her blood clot or her "artificial" parts in her heart or nothing else, to say the least.  They are being safe rather than sorry because if she did start getting "sick" from the salmonella in the blood it would not be good.  Hopefully, she will only need 5 days of antibiotics given her clinical healthiness.  Wednesday when I took her into the pediatrician and got her a rocephin shot counts as Day 1 so it looks like Sunday could be her last day for the i.v. antibiotic (with all fingers crossed that no other cultures come back positive).  As of now, the culture from Monday is still negative and the ones from Wed. are still pending.  Also, please pray her i.v. holds until Sunday because it is only half way in but is flushing o.k. for now so we're holding onto what we've got with positive thoughts.  She also continues to get her twice a day lovenox shots while in the hospital.  At least, I get a break from giving them to her for a short while and someone else gets to be the bad guy.  Although she is in the hospital for now she seems perfectly healthy and happy so I actually drove back to Temple this morning to make a doctor's appt. for myself that had already been rescheduled once from our hospitalization earlier this week.  My mom, Mimi, is staying with her now and they are hanging out, playing, eating and watching movies.  I pray she stays this way through completion of the antibiotics and we don't 'pick up' anything else while in the hospital.
Last night after admitting, we had some special visitors to see us.  SFC Mahannah's wife, Nadia & 2 kids came by to visit and brought Reagan a get well gift from "all of Daddy's friends".  Nadia's husband and Rod work together in the same unit but we have never met.  Thank you Nadia for taking the time to come by.  It was very nice meeting you and we appreciate your sweet spirit!
Thanks again to Mimi, PawPaw, Aunt Kay & Marisa Conley for helping me with Nolan so far.  I'm trying to avoid Nolan having to spend time in the hospital as it's not fair for him. & since Ronald McDonald doesn't have a place to retreat from the hospital we are all taking turns spending the nights with Reagan and driving back & forth to Temple.  As long as Reagan remains stable, I am going to spend the evening at home with Nolan, maybe have a mommy/son date night tonight and then take MiMi and PawPaw's place at the hospital tomorrow through discharge.  Thank you, thank you sooo much for all your help!!

Crazy change of events!!!!!

Crazy day yesterday..was about ready to have my prozac dose upped!!  When Reagan was in hospital Sunday, labs were drawn.  Monday she came up with a positive blood culture but they went ahead and let us go home thinking it was just a bad sample.  Now that culture is growing salmonella?!?!  Yesterday, dr. was getting ready to readmit her to start i.v. antibiotics to treat it but there wasn't a bed available at hospital so we were able to stay home last night.  Instead had to take her to pediatrician for another lab draw (took 3 pokes to get enough blood) and get a rocephin shot.  That's four pokes with needles in one dr. visit.  Needless to say, she and I both were worn out afterwards.  We are waiting today for news from dr. on what is going to be done.  May still have to admit in hospital.  I pray not as Ronald McDonald House has no openings right now. 
She looks wonderful and is playing non-stop.  So hard to go admit her where she'd be tethered to a monitor round the clock!  Pray, pray, praying for good news!!

Hospital Update

Just a quick update from our short hospital stay.  First of all, let me say "Thank you, Lord" that is was only an overnight stay.  One of our shortest hospital stays ever!!  We checked in Sunday morning and Reagan received her first shot of Lovenox around 2pm.  4 hrs later labs were drawn to check the lovenox level.  Thankfully, it was perfect so her dose did not have to be altered.  At midnight, she received her second shot.  Monday morning, Kay and I practiced giving shots.  Aunt Kay actually let me give her just a shot of normal saline to practice before giving Reagan hers.  I then bravely administered my first shot ever.  It wasn't as bad, for me at least, as I was expecting.  I'm sure Reagan might feel a little differently.  Anyway, we started giving her stickers after each shot so now she's asking for stickers all the time, ha!  Monday afternoon, she was discharged and we all three came home.  Kay comes over to the house everyday at 9am and 9pm to hold her while I give her the shot.  We have follow-up appts. next Tuesday in Austin with cardiology and hematology.  The hematologist will do a lab draw to make sure her levels are still good and talk with me about duration of therapy and how often lab draws have to be done.  I've heard anywhere from 3-6 months of shots.  Yuck, I'm praying for the shorter course but most importantly, that the Lovenox takes care of the blood clot.
Everyone at Dell Children's could not believe how big Reagan is.  The last hospital stay we had there was in Oct. of '08 so needless to say, she looks a little different now.  They were all coming in and saying hi to her and she would just look at them like who are you.  I told her these people took care of you when you were a very sick baby & she would just smile.
Here are some pics from our short stay.

enjoying some of my mom's lunch

outside Sunday night by the waterfall (I took 3 pics and she closed her eyes for all 3)

watching Toy Story on the laptop with her new Elmo she got off the hospital Toy Cart

Thank you all again for your prayers!  Keep praying the clot is resolved quickly.

Bikes & Blood Clots

Hi everyone,
I know I just updated but alot has happened since my last post.  Friday, Reagan had a check-up with her cardiologist and during a routine echo the dr. found that she has a blood clot in her right subclavian vein leading into her right atrium.  Everything about the echo looked fantastic except this.  Her heart function & new pulmonary valve all looked wonderful.  The blood clot was a total surprise!  Dr. Johnson said he was very shocked to find this.  It is obviously something that cannot go without attention so to make a long story short, Reagan will be admitted in the morning (Sunday) at Dell Children's in Austin where injections of Lovanox will be started.  Lovanox is an anti-coagulant therapy used to treat deep-vein thrombosis (blood clots).  Dr. Johnson is hoping these injections will keep the clot from getting any larger and perhaps (we strongly pray) eliminate the clot all together.  This vein it's in is a major vein and will be needed in the future for possible central lines during hospitalizations, heart caths and if the need for a pacemaker ever arises.  The Lovanox will be started Sunday and then lab draws will be done to make sure it's the accurate dose for her and then the plan is to teach me how to give the injections and once we get approval from insurance, hopefully on Monday, can be discharged late Monday or Tuesday and I will give the shots at home.  Please pray that this hospital stay is as short-lived as it claims to be and that we have no issues with the insurance approval for the home injections.  Also, for sweet Reagan as she has no idea she is going in the hospital in the morning and will not understand why we are there much less why she's getting shots as there are no outward signs of this.  I am sooo thankful the echo was done and that the clot was discovered so that we can begin to treat it.  Please pray it does not dislodge and go to her lungs or anywhere else for that matter.  If the Lovanox treatment does not work, there is a chance she would have to have a heart cath and the dr. would go in and try to balloon that vein open so that it does not totally occlude (close).  I will update as best I can from the hospital.  Thank you to MiMi & PawPaw for keeping Nolan for me this week.
On a better note, Reagan and I, along with Aunt Kay, attended the AMBUCS Trike Rally today at Harley-Davidson in Temple.  Eleven bikes were given out to special needs individuals ranging in age from 18 months to adult age.  Thank you to the generosity of people we don't even know for providing this bike for Reagan.  We pray it is a fun means for her to build her leg muscles so she can better walk and keep up with her peers.  Here are some pics from the event.....

Reagan's physical therapist, Donna, helped start the Centex Ambucs chapter recently

Donna introducing Reagan before her trike was presented to her

Placing Reagan on her trike

securing Reagan's feet on the foot pedals with Jenise, another physical therapist

Reagan riding off on her new trike to much applause

I want to thank many of our friends and family for coming out to the event in support of Reagan.  It warmed my heart to have all of you there with us and I know Rod is thankful too.

Our sweet neighborhood family, Ms. Pat and Dick & Patty Mayfield

Reagan's old occupational therapist, Mrs. Tracy, who we give all the praise for teaching Reagan to eat

Our friends the Conleys (Joey, Marisa, Preston, Parker & Emerson)

and lastly, Aunt Kay, Uncle Mark, Taylor & Tara

Thank you all for coming!!

As you can see from the pics, Reagan appears to be a picture of health but know we must tend to this blood clot so she can remain healthy.  Keep up the praying....we cherish them!!

Busy Summer Days.....

Hey everyone, I know it's been awhile but we have been very busy trying to stay busy during this hot summer while daddy's away.  Reagan has many activities to keep her busy including Physical Therapy, Speech Therapy & Occupational Therapy twice a week.  Nolan has had camps, camps and more camps in addition to his swim club.
Reagan had made many strides in her development prior to this last surgery and as with every surgery we have been playing catch up to get back to our pre-surgery status.  Just recently, Reagan has begun "walking" again.  When I say "walking" she does it on her own and for short distances throughout the house.  We still have her walker in which she relies on sometimes.

Taking a stroll to visit our neighbor, Ms. Pat

Reagan is at a point where she needs to build her muscles as well as endurance.  She is capable of doing things other children her age do just can't do them as quickly or with as much energy so alot of time and patience is required on my part.  Although she gets physical therapy twice a week, her therapist and I were talking today about how Reagan seems to be bored with her physical therapy sessions.  She wants to be doing normal toddler things in a normal environment so we've recently added in swim lessons to her weekly routine.  As I told the swim teacher, I'm not necessarily paying for her to learn to swim, per say, as much as just doing something she likes and that will build her muscles all at the same time.

Practicing her kicks with Miss Brittany

In addition to swim lessons, we checked out a local gym for gymnastics classes.  Reagan will begin a Mom & Me Toddler 2/3 gymnastics class in August.  This will be once a week with mom.  Originally, it was my intent to send her to Mother's Day Out this fall two days a week.  However, I took her one day this summer and was reminded just how far behind her peers she is physically.  I couldn't bare to go off and leave her sitting there like a helpless puppy.  When the teacher called for the kids to line up to go outside, there Reagan sat while all the kids promptly jumped up and ran to the door.  Needless to say, I helped her to the door and we eventually made it out to the playground along with the other kids.  As I said earlier, alot of time and patience is required but as long as she is trying I am willing to allow her to do things on her own.  After all, it's not as though she is not capable and needs to be in a wheelchair, however,  she can't keep up with a room full of toddlers either without alot of help.  So I've decided to take a rain check on the Mother's Day Out program and do activities with her to help build her muscles through the swimming and gymnastics.  It wouldn't be much of a "Mother's Day Out" for me if I was worried about her the whole time.  This way, I can be with her still and get her a little more help in the area of physical development.
Also, in terms of physical development, Reagan's physical therapist along with others in the area recently started a local AMBUCS chapter.  AMBUCS provides special trikes/bikes to special needs kids.  This Saturday, Reagan will be receiving her very own trike designed to meet her special needs.  I look forward to bike rides with the kids this fall when it's cooler in which Reagan can actually ride this time instead of being pushed in a stroller and again building her muscles as she goes.
In terms of her speech, she is saying everything.  Everyone may not be able to understand her as mom has to guess sometimes but she says things on her own now without us having to prompt her to say everything.  In fact, it often sounds as if she's handing out orders and ruling the roost. "Sit mama", "eat bubba", "outside swing high".  So thankful to hear that little voice after having a breathing tube forced down it so many times and worrying about vocal cord damage- Praise God for those "orders" she hands out!
And lastly, eating....we are back to full force.

Eating pizza (her favorite) while visiting MiMi & PawPaw

She eats round the clock- probably more like we all should eat (little portions all day long) but tends to keep mama on her feet.  Seems like I wash those little hands and mouth and high chair tray 10 times a day but again, thankful to not be on continuous g-tube feeds anymore.  In fact, she only gets fed through her g-tube at night for supplemental nutrition and during her naps.  I am trying to explore either a higher caloric formula or something to add to her current formula to help her gain weight.  We still have not gotten back to her 24 lbs. she was prior to surgery.  If any of you other heart moms have suggestions, please let me know.  Seems like she has been wearing the same bottoms (shorts/pants/skirts) for 2 years now.  Can't seem to hold anything up around her waist bigger than 18 months....it all falls to the ground...hence the song "Pants on the Ground" from American Idol--ha!
Anyway, I have a little helper as I'm typing this update so it's taking me a little longer than anticipated to complete so thought I'd share a photo of a recent activity she enjoyed helping with......

Photo of us taken with the webcam while we were instant messaging with daddy on the computer.

Since my "helper" is trying to help a little too much, I 'll think I'll sign out for now.  We head to Austin in the morning for an appt. with the cardiologist so better start getting ready for bed. 

Happy Belated 4th of July!

Since our last post, things have changed quite a bit.  First of all, Daddy left to defend our nation.  We love you daddy and our so proud of you!  The night he left, Reagan decided to get sick.  For 5 days straight, she retched, vomited, and drooled non-stop.  We got little sleep but we survived.  Then, on the 6th day, she woke up and was fine.  Not sure if it was withdrawals, stomach bug or what it was.  On the 5th day, she had stopped vomiting but was still retching and drooling, we had an appt. in Austin with her cardiologist.  He ordered blood work and x-ray that day and all her labs looked great, even her kidney levels.  The x-ray still was a little "wet".  He did cut back on just one of her diuretics this time.  So far, she has been doing great, in fact, on Sunday, 4th of July, I tested her off the oxygen and she did good.  She had made it back down to 1/4 L but now is doing o.k. without it.  It's a day to day process, I will continually monitor her to make sure she's doing good without the oxygen.  Hopefully, we will not need to use it again.
Thankfully, the week Reagan was sick, Nolan had gone to visit his friend Sam in Dallas. Thank you, thank you Schuhmacher family for having him.  Needless to say, I had my hands full at home with just Reagan.  Then, over the holiday weekend, Mimi & PawPaw came to visit.  We had a good time.  Thank you for taking Nolan to the holiday festivities on Sunday so he could enjoy the day.  Reagan and I joined them in the evening when it was time for the fireworks.  It was a great time as a family minus Daddy, of course.  Wish you could have been there!

Look, Daddy, no oxygen!

Happy 4th of July Daddy!

Thanks Mimi & PawPaw for celebrating with us!

We love & miss you Daddy!

Thank you for our freedom!

Enjoying Being Home....

Hey everyone,  I know it's been awhile since posting but we have been busy enjoying family time together.  Reagan is doing great.  I know you all must have prayed hard because soon after the last post Reagan quit retching and vomiting and has been trying to eat and put things in her mouth.  Such a relief to see the Reagan from before.  She is still on all 3 meds for her withdrawals and she has her moments but for the most part is a happy girl again.  She has started back up on all of her therapies (speech, physical & occupational).  She's still a little wobbly on her feet but trying to move and groove.

The day after coming home we visited her cardiologist and had her lab work done.  All her labs looked good so he cut both of her diuretics from twice a day to once a day.  The following week she had a checkup with her pediatrician.  Because her oxygen requirement had gone up from 1/4 L (that she came home on) up to 1 L... an xray was done.  The xray showed her lungs quite "fluffy", in other words retaining fluid, so we had to go back up on her diuretics to twice a day again and will stay on that until we see the cardiologist again on July 1.  The day at the pediatrician turned into a long visit because of the xray, blood work and then waiting until the pediatrician got ahold of the cardiologist to give him the results.  Thankfully, our pediatrician's 12 yr. old daughter had come to work with her mom that day so she entertained Reagan while we waited.

Reagan and Taylor coloring together

In our family time, we've enjoyed going to see Toy Story 3 with the kids

Note: The glasses made for a cute pic but Reagan would not wear them at all during the movie, only before and after the actual movie.

We were also able to enjoy a nice Father's Day at church and them lunch afterwards

Outside the restaurant...good ole Texas BBQ that we missed out on while in California

(although, Reagan went more for the pickles and onions than the BBQ itself)

In the very near future, we have our next big stresser of the year but know God will see us through!  Thank you all again for all your love, support, prayers and encouragement!  Please continue to pray for our friends the LaPointes as baby Arden is still in the hospital in CA.  

Also, baby Hunter's family is a military family (Marines) we met while there.  He had been in the hospital about 3 weeks when Reagan was admitted and just recently got to leave the hospital but still has to remain in the area and get checkups 2-3 times a week.  Please pray they both get well enough soon so that they can go back home.

Home Sweet Home

Yes!!!! We made it home.  Sorry for not updating sooner.  Reagan was discharged on Wed. from the hospital and spent Wed. night at RMH with us before we all flew home on Thurs.  Since being home, I have been busy unpacking, giving meds, breathing treatments and catching vomit.  Yes, Reagan is still withdrawing as well as she has thrush so she has been retching and vomiting alot.  I hate seeing her this way as she had made so much progress before surgery and did not do that anymore.  She also ate, talked and walked which she is not doing at the moment.  I know she will start again it's just hard seeing her not happy when we all know what a happy child she normally is.  Anyway, we weren't even home 24 hrs. before we had to get up Friday morning and head to Austin for a lab draw and dr. appt.  She had her blood drawn Friday morning and Friday afternoon we saw her cardiologist, Dr. Johnson.  He said her creatinine was .6 (even better than her pre-op level) and all her electrolytes looked good!  He also said her echo they did on her at the hospital on Tues. looked GREAT!!  He told us we could stop one dose/day of her twice daily Bumex and Aldactone (two diuretics).  I am so glad as I feel these upset her tummy.  Next week, we will see her pediatrician and have them do another blood draw and hopefully be able to stop the diuretics all together at that point.  We also still have to see the pulminologist, nephrologist, and neurologist.  Fun, fun, I'm sure Reagan can't wait to see another doctor!  Anyway, Rod is off work for the next week so we are also trying to enjoy some family time.  This is hard as Reagan doesn't want to have anything to do with anyone but her mama so it's a little hard for me to do things with the fam.  I wanted to thank our neighbor, Debra, for driving our car to the airport and picking us up on Thurs.  Also, she had us over for dinner that night which was wonderful to have a home cooked meal for a change.
Here are some pics from the last few days:

Discharge day- getting loaded up to leave the hospital

In front of LPCH

Asleep on the couch at RMH

Nolan trying to get love from Reagan (poor thing, the only time he can get near her is 

when she's asleep because of her withdrawals)

Headed to the airport for the ride home

Loaded on the jet and ready to go home....and the passengers are:

Daddy & Reagan

Mama & Nolan

and of course, Aunt Kay

THANK YOU WILSONART FOR THE RIDE HOME- WE TRULY APPRECIATE IT!!

Aahhhhh.....finally home!

Our evening of dinner and swimming at the Moore's:

 

Nolan enjoying the pool.  Reagan can't swim for another 2 weeks because of her incision.

so she was just happy visiting with Gracie, whom she missed greatly while away!

THANK YOU DEBRA, BUTCH, MARIBETH & BRENT FOR DINNER.  IT WAS DELICIOUS!

And there you have it, we're home and trying to get back to a normal life....

laundry, dishes, etc. but so thankful for it!!!

Please pray for Reagan's thrush to get better real soon as well as her withdrawals.  Thank you all again for all your love, support, prayers, cards, etc. during this journey!