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!