Boston, here we come...

Thank you for your prayers, they have certainly been felt!

-We are preparing to leave for Boston early this Wednesday morning (the day after our sweet Abigail turns 9 years old).  I would be lying if I said that when I got an email reminder confirming Grace's appointment at Boston Children's my heart skipped a beat because it meant that things were getting very real all of a sudden.  There's a part of me that is eager to get her valve dilated because I know that she needs it and I can't wait to hug the neck of Dr. Marx (our cardiologist in Boston) who fought so hard to keep our baby alive and refused to give up on her; however, the idea of messing with her valve that has given us a sense of normalcy for almost 2.5 years is super scary.  We serve a big God, so we cast our fears on Him, trusting that He's got this.  An added blessing came on Friday when I was working at a conference for work and there was a Medtronic (the company that makes the melody valve, what Grace has) rep also working the conference.  I noticed she had some valves displayed on her table that looked a lot like the melody.  I went over to talk to her and while that valve was meant for the aortic position, it is very similar to the one Grace has.  We talked a lot about the valve, she took one out of a jar with some sort of solution in it (it must have been to keep the tissue from drying out, etc) to show me the leaflets and how the valve is dilated in the cath lab.  Just getting to talk to this lady and see the valve up close to better understand the dilation process has given me some peace.  Praise be to God that so far everyone has remained healthy despite Andrew coming home from school with a headache and the nurse saying he had a 99.3 temp (SO grateful that when he got home we took his temp about 100 times over the next 24 hours, with two different types of thermometers and never got a reading higher than 98 degrees) and Abigail fracturing her finger.  Will you please pray for continued health (especially for Grace), that our trip to Boston is seamless with no complications from the dilation, and that during the heart cath they find her valve to be in great working condition (no need for any further intervention, like open heart surgery for many more years)?  THANK YOU, we covet your prayers! 

Look at all the goodies one of our precious family friends brought Grace for her/our trip to Boston!

-The Lord has been graciously making His will clear to us about Grace's school for next year and given us His crazy awesome peace about it.  Don't get me wrong it will be in no way easy to walk away from the Rise School, but the peace and wisdom God bestows on you when you are truly seeking His will and are willing to die to your own is an experience that I often times feel unworthy to experience.  There have been so many hugs from God and confirmations that we are going in the right direction over the past couple weeks, but here are a few things giving me chills to even type...  Last week, David and I were praying together before bed and David had prayed the Lord would send someone that is completely unbiased to speak His truth into our lives.  The NEXT DAY I was at work with my head in my calendar (yes, I still use a hand written calendar that I can write in...  I love it, despite all the advancements in modern technology) when I hear someone say my name...  as I looked up, it was Melanie, a friend who I have only really met in person a hand full of times, the first time being about 3 years ago when we were both in the cardiology clinic with our kiddos and I was talking to her about how we were waiting to hear from the Rise School to see if Grace would get a spot there (there is always a wait list to get into the Rise School).  This new friend at the time encouraged me that she had hope we would get in and, fast forward a few months, by God's grace, we did indeed get in to the Rise School.  Her son was graduating the year before we began, so her sweet son is now in second Grade.  Back to our Divinely appointed meeting last week, the only reason she walked into the building where I was sitting is because her and her son were looking for a building that had air-conditioning in between their day worth of Dr's appoints (the point being, she had no idea what building she was walking in to).  When she asked me if Grace had two more years at the Rise School, I told her how we were in the thick of praying about that and told her all the details.  All I had said to her was that the PPCD (preschool program for children with disabilities) program we were zoned to is called Pegasus and it's an inclusion model, before I could get another word out she started listing off all of the benefits to the PPCD program (she nailed every point I would have shared with her, many of which I couldn't imagine anyone but our family really understanding).  After listing off the benefits she said something like, it sounds like a no brainer to me.  I got goose bumps and wanted to cry because she is someone I really trust, she knows the awesomeness of the Rise School first hand, and she has experience with the transition to public school.  It was so evident the Lord was answering our prayer from the night before in such a profound way.  Next hug came as we toured the PPCD program on Monday morning...  One of the first things that happened is that Grace walked in and a few of the typical developing kids walked up to Grace and were talking about how cute she is.  The teacher introduced them, to which one of the little girls put her arm around Grace and said "Hey everyone, this is our new friend, Grace!"  As they began their morning routine on the rug, Grace sat down with all of the other kids as if she was ready for school and that same sweet girl scooted next to Grace and put her hand on her back.  We went to view the other PPCD class and they happened to be in the middle of singing and dancing (Grace's love language) and she again jumped right in.  Everything about the program seemed like such a great fit for Grace, but I still had just one concern and that was their drop off policy (you can't walk the kids to class, but you have to take them to the office and one of their teachers would come get them).  It wasn't a deal breaker, we just weren't excited about it at all.  Well, wouldn't you know...  they are changing that policy for next year!  Long story short...  we have another ARD meeting on 5/31 where we will discuss Grace's goals, etc for next year and as long as the meeting goes well and they offer all that we've talked about, then we will move forward with the PPCD class for the next two years.

-Swim team is in full effect already, the kids had a mock meet this week where the kids did well.  This is the one sport where Andrew is better than Abigail, so we sort of like that since she smokes him at most everything else.  While neither of them are the fastest or slowest in their age group they both work hard and have fun.  Isn't that what it's all about after all?

-The school where David works is already out for the summer, so he was able to take the kids fishing on Friday since they had a half day.  They all caught fish with their new fishing poles, what an upgrade from their princess and buzz lightyear poles ;-)

-Gigi's Playhouse had a music class on Saturday which was a blast.  Grace always loves anytime she gets to see her bestie Sadie!  With the prospect of Grace not going to the Rise School next school year, our need for Gigi's has increased substantially.  At the Rise School, you have an instant network of families with kiddos just like yours, so leaving our bubble/safety net is really scary, but the Lord has used this transition to remind me that Gigi's is a much needed resource in our community because not only does not everyone have the opportunity to attend the Rise, but the Rise only goes up until the kiddos are 6 years old...  then what?  All that to say, I have always LOVED Gigi's (hence, why I'm on the board and tell anyone who will listen about it :-), but I have never needed Gigi's more!

Grace and her Bestie, Sadie were excited to see each other at Gigi's!

-Abigail had her last soccer game of her U9 season this Saturday and it was...  CrAzY!!!  The other team was one of the most physical and dirty teams that we have played.  We always pray for Abigail's safety (as well as all of the other girls) because she plays hard out there and is tiny compared to many of the other players (especially when they are playing up a year), so can often times take a beating, but by God's grace she typically bounces back up and even if it's a hard enough hit to make her cry she refuses to come off the field.  That's how we know if something is ever serious, if she comes off the field (God please protect her from that).  My point being, it's what you expect when playing soccer, however, when you play a team that takes it to another level by playing dirty, it can be so scary and frustrating to watch.  Huge shout out to the referee for actually calling all of the fouls (could have handed out cards, but at least he was making the calls because we have had plenty of refs that would have let too many fouls go and the game gets increasingly more scary), but let's just say that Abigail was taken out BAD for about the 4th and worst time at the very end of the game.  Be still Mama Bear, be still!  The coaches of the other team acted just as dirty as much of the team played, but the silver lining, blessing in disguise, is the great life lesson it taught our girls.  You can play by the rules and still win.  They won 2-0 and got to see that despite the circumstances, there are girls with sweet hearts in the midst of the drama.  One of the girls from the other team found Abigail after the game and told her that she really likes how she plays and that she did a good job.  What a light that little girl was... Abigail saw the number on her jersey, so now I need to find a way to communicate with her parents to affirm them and let them know what a light her daughter was.

-Abigail's soccer team had their end of the season party where they were surprised with a visit from Melissa Henderson (a Houston Dash player)!  She shared with the girls what her journey has been like starting out in youth soccer to now, playing professionally, and took questions from the girls.  The coolest part about her surprise visit is when Abigail turned to me as she was talking and mouthed, she's a great soccer play and she loves the Lord!  Melissa is a class act in so many ways, but I would say her ability to glorify the Lord on and off the field tops them all!

GREAT season, with a GREAT team!!!

DECISIONS!!!

A FEW WEEKS WORTH OF AN UPDATE...

-We ended up having to put our sweet fur baby, Tucker, down.  I knew it would be hard, but I didn't know it would be THAT hard.  While there were many teary days, we can all smile as we remember what a faithful companion Tucker was, from the way he would let the kids climb all over him to the way he would follow me around the house.  Twinkie seems to be adjusting to being by herself, although it was painful to watch her look at the door and wine (like she use to do when he would go to the groomer or vet and she stayed home) for Tucker for days until she finally gave up.  I think she might secretly like the extra attention (especially when my dad picks her up for a playdate while we are at work) and getting to go on adventures with us (soccer games, etc).

Besties for life!

David with the best wedding present ever, Tucker!

-Last weekend we had a mini carnival at Gigi's Playhouse while Abigail had a soccer game...

Grace showing off the craft Andrew made for her!

Added bonus: One of Grace's favorite friends, Eddie came!

-Look at these big kids!!!  This was from their Spring school pictures taken a few weeks ago.  Abigail is in 3rd grad and Andrew in 1st.

These are pictures of a picture, so sorry for the poor quality

-Andrew continues to love Cub Scouts and we continue to love watching him serve and grow.  So proud of him!

Tour of the police station...

Collecting food for the canned food drive... Andrew is on the far left

-Andrew is such a tough kiddo, when he isn't feeling well it's so hard to assess how sick he is because he will always say "I feel okay, I'm just tired."  I'm glad that we took him to the Dr after a day of having a fever because a chest X-ray revealed that he had pneumonia (again!).  After staying home from school for 3 days, he felt so much better.  As you know, when someone in the house gets sick, we try not to treat them like a leper, but it scares the daylights out of me that Grace may get sick...  which would be especially a disaster right now because we are just a week and a half out of her going back to Boston for a heart cath to dilate her valve.  If she gets sick between now and then, it will likely require us to reschedule her heart cath (which based on her last echo is much needed).  Will you please pray for health for our family, especially Grace leading up to her heart cath and, after of course, for a successful complication free heart cath?

 I love this selfie that Andrew accidentally took on my phone...

Please pray that these 3 (and their mommy and daddy) stay healthy, especially the cutie in the middle!

-We had Grace's yearly ARD meeting (meeting with the school district to plan what educational services your special needs child may need and can receive) two weeks ago and it went great!  Better than I could have ever imagined, actually...  so good, that it sent us to our knees as we pray about what the Lord has for Grace as it relates to school for the next two years.  As anyone who knows us in any capacity probably knows, we LOVE The Rise School (where Grace has gone to school for the past two years).  When describing it to people, the best description I can come up with is that it's a little slice of heaven. Therefore, at our ARD meeting I went in confident that we would keep next year (and the following year) doing exactly what we've been doing...  she would stay at the Rise School and receive speech services at our local elementary school, that was until the precious PPCD (preschool program for children with disabilities) teacher once again expressed her desire to have Grace in their program, to which I threw out every objection that I had as to why that program wouldn't be a good fit for us... to which she had a perfect response for everyone of my objections.  I left the meeting encouraged that it had gone so well and I really got the sense that each person who is a part of our ARD committee genuinely cares deeply for Grace's well being.  This was such a surprise to me because in the special needs community we learn so much about the law, knowing your rights, and how to advocate well for your child, so when things go like they are "suppose" to, it is sort of surreal.  Upon leaving the meeting, I committed to talking to David about the PPCD option, but it almost seemed ridiculous to talk to him about it because I couldn't even fathom the idea of Grace not finishing the next two years at the Rise School.  I called David at work and told him all about the meeting and reluctantly said "do you think we are suppose to pray about if this is the Lord's will for Grace at all?" and he agreed without hesitation.

A few details about the amazing PPCD Pegasus program that we are zoned to...
-It is an inclusion model, just like the Rise School.  50% of the children are typical developing (they are teachers kids and the other 50% are children with special needs).
-She would go a full day and be on the same schedule as the big kids (no random days or weeks off here and there like our current situation) and the school would be in our neighborhood (it's a different elementary school than the one the big kids go to and that Grace will attend, but it's still in the neighborhood).
-Great teacher to student ratio with a maximum of 12 kids and 4 adults (1 lead teacher and 3 aids).
-They use some conscious discipline strategies that the Rise School uses and we have come to love.
-Grace will get to meet/be in class with kiddos that will transition to Kindergarten with her, so she will have some familiar faces and friends that will hopefully make that transition easier.
-She should be able to bridge instead of starting Kindergarten as the youngest kid in the class.
-She will learn to get comfortable and thrive in the Kindergarten environment as she will have the opportunity to go to the cafeteria for lunch, go out to recess, learn how to be a good audience as they attend performances by the elementary age children, etc.
-Their goals for the children in terms of preparing them for Kindergarten are the same as the Rise School.
-She will receive her therapies there (speech, OT, and PT).
-and... it's free!

As we have been praying about this decision, I have gone through every emotion possible, but the biggest one was heartache imagining the possibility of not returning to the Rise School where Grace has thrived beyond our wildest imagination.  She has made precious friends, loves the teachers and staff, and let's face it... I love them too.  I realized that I love her school just as much (if not more) because they have been such a huge support, sense of security and safety net for me as we have been on the roller coaster ride of raising our precious Gracie Doo and keeping her alive.  All that being said, our biggest prayer is always that God would make His will clear in our lives and that we would have the courage to say "yes, Lord!"  Two days after our ARD meeting, I met with the director of the Rise School because I value her opinion so much and know that her heart is truly in favor of whatever is best for the child and their family.  I sat down in her office and couldn't help but break down in tears as I shared with her the decision we were faced with.  She comforted me with the exact perspective I needed.  She said, "let's just stop and be grateful that you have two great options and both really want your child in their school.  It was not that long ago that kiddos like ours didn't have any good option and you have two!"  She agreed that the PPCD program sounded fantastic and gave me some additional questions that I could ask.  As I told her that we had been and would continue to pray diligently about the decision, she told me to tour the class (which we are scheduled to do tomorrow) and then take our time making the decision.  Do you see why this school is so amazing?!?!  We have tried to include Abigail and Andrew in this process as much as possible, asking them to pray for wisdom about this decision, praying together often about it, checking in frequently to see how they are feeling about it, etc.  It has been a hard, but great process for all of us to work through.  It didn't take Andrew long to share that he thought the PPCD program made a lot of sense and would be good for Grace, where Abigail (much like her mommy) is very emotionally tied to the Rise School (that is where she hopes to work someday and she just loves being there), so it has been a more difficult process for her, but it's been neat to see the Lord work on her heart through it.

Will you please pray for three huge prayer requests...
1)  ***Grace (and the rest of the family) remains healthy before and after her heart cath and that the dilation of her valve goes flawlessly, with no short term or long term complications
3)  Wisdom and peace about Grace's school
4)  Abigail and Andrew do wonderfully while we are in Boston

THANK YOU FOR BEING SUCH FAITHFUL PRAYER WARRIORS, VILLAGE!

Highlights and not so high lights...

Highlights from the week:

-Grace continues to be obsessed with watching The Christmas Choir video (from Abigail's 3rd grade play at school) multiple times a day.  It is unbelievable how much joy it brings her, making it a great treat/reward for doing what she's asked to do.  She knows all of the songs and dances, but her favorite part is finding Abigail in it.  Grace even puts her hair behind her ears at the same time that Abigail does in the video, my point being that Grace has studied EVERY detail of this video.  We can't wait until the video from Andrew's 1st grade play comes in the mail because we are eager for a little variety :-).

-It was a few weeks ago that I was getting ready for bed while Grace was playing in the bathtub and all of a sudden she just busted out the "abc song" and nailed all of the letters, except she sometimes leaves out "T" or "Y" and finishes the song with "won't my mommy be so proud of me!"  Ummmmm, yeah I 'm proud of you girl!  Don't get me wrong, it's not that I didn't think Grace would ever know her "abc's," but I guess I did underestimate her ability a bit since she blew me away with how clearly she said the letters and the fact that she even nailed "L, M, N, O, P!  ...and just to really glorify the Lord, she took it to a whole new level when she would call my name and show me a letter (you know the foam letters that can go in the bathtub) and tell me which letter it was.  She certainly doesn't nail them all, but she happened to get the majority right that time and I just about cried because I was so proud of her!  I can easily get focused on her physical health (especially lately, more on that in a minute), so when she hits a milestone/achieves a big or small developmental goal it can catch me by surprise and knock my socks off.  It serves as a vivid reminder of how God is doing a mighty work, even when we are distracted and feel like we fall short.  It is also a reminder of all the hard work that her teachers pour into her each and every day (along with her two best teachers, Abigail and Andrew).

-Grace's spontaneous, perfectly worded, and simple prayers continue to bless us throughout the day!

-Some of our favorite Grace sayings:
"share some"- anytime you are eating something that she wants.
"ok, momma, ok!"- when she is doing something that you asked her to do.
"Sweeeeet!"- when someone does something that she thinks is nice.
"Oh sowry momma!"- when she is apologizing for something.  She is quick to apologize for almost anything that she thinks might have hurt someone, or when you do something wrong, she apologizes instead.
"THAT???"- when she wants to know who someone is/their name (which includes her pointing at the person).   We are still working a more polite way to ask "what is her name?" :-/
"I'm ciiiiiited"- when she's excited about something
-she sings everyone in the family happy birthday over and over again!

-David took the girls to get their hair cut on Tuesday, since they all had the day off because of local flooding from all of the rain we got.  When he sent me these pics, my heart skipped a beat because they went way beyond the two inches that I approved...  I've adjusted and am learning to love her freshly chopped short hair because she can rock any hair do, I just had no idea that her hair was so sentimental to me.  It all stems from the months she spent sedated and intubated in the hospital that caused the back of her hair to completely break off, with patches of bald spots (her nurses always tried to help us take the best care of her hair as possible, but it was inevitable), so when it eventually grew back it served as such a sign of redemption that I never had a desire to cut it.

-the big kids are both wrestling right now which is fun to watch, but hard when they pair Abigail and Andrew up because, despite Andrew being 5 lbs heavier than Abigail, she is one of those kids that is going to go hard core no matter what she's doing (I don't know where she gets her intense competitive drive from :-/ ), so she smokes him, but not without him putting up a heck of a good fight.  Luckily, they aren't paired up often, just when there aren't other kids there who are a good match for each of them.

-I got to join my boy on his field trip to the Children's Museum!

-Saturday was a beautiful, sunny day for soccer, made even sweeter when we realized that Abigail was playing against one of her friends from church who we haven't seen in a while.  It was sweet to see them encourage each other on the field, even though they were on opposite teams and defending each other.  Then, today's game was a great game, but they had to call the game with about 10 minutes left to go because what started out as rain, turned into torrential down pour.

Now the not as high highlight...

-Grace had a follow up cardiology appointment this week since they wanted to see her 2 weeks after being discharged from the hospital.  For the past couple years, the gradient across her mitral valve has been between a 6-9, however this time it was a 13.  We knew that at some point her gradient would go up because she's growing and the valve is a fixed diameter, but we just didn't expect to jump that high that quickly.  The good news is that we already have a heart cath scheduled in Boston for May 27th (we leave on May 25th for a full day of pre-op) to dilate her valve.  Originally, the heart cath was scheduled prophylactically (her team in Boston thinks that it makes sense to dilate these valves at 2 years, even if the gradient doesn't warrant it, just to stretch the valve); however, based on this week's echo it is clear that she is due to be dilated anyway.  Praising the Lord for His amazing provision in that he allowed us to get on the schedule for her heart cath (they are extremely busy in Boston, so it's not easy to get an appointment quickly unless it's very urgent) knowing that she would really need it by the end of May (it's no longer prophylactic).  Will you PLEASE pray for every last detail going into out trip to Boston, that God would keep Grace totally healthy prior to and after her heart cath (we will have to reschedule if she is sick leading up to the heart cath), that the big kids would have peace about us going, that Grace's heart cath would go seamlessly (no complications what so ever), and that we have safe and smooth travels?  Anytime you mess with a valve there is a risk for damaging it, in which case they would have to go in via open heart surgery to replace the valve.  Our prayer is that Grace can keep this valve for many more years, until she is big enough for an adult size valve, so we would greatly appreciate your prayers that the valve is in no way damaged during the dilation and that the Lord would protect her from any of the risks associated with having a prosthetic valve, like a stroke, etc.  I have been struggling with a broken heart and bouts of fear the past couple weeks, as a couple of precious children like Grace (either heart defects, Down Syndrome, or both) who I have had the honor to walk closely with their mommies through this journey, have been promoted to their heavenly home.  My heart aches for these sweet friends as they endure a brutal reality of this broken world by having to burry their babies.  The loss of these kiddos that are near and dear to my heart has served as a constant reminder of the very real reality that we don't know how long the Lord will allow us the honor and privilege of being Grace's parents on earth.  I know that tomorrow isn't promised for any of us, but this truth is always in our face with our Gracie girl.  It is a constant battle to give those thoughts and fears over to the Lord because otherwise the fear can be paralyzing.  God has been so faithful and His character is such that we can trust His heart and perfect provision, so we cling to His promises and yearn for eternity where we will never have to worry about broken hearts, infections, and ultimately separation from each other by death again.

-Last prayer request, our dog Tucker is 13 years old and not doing very well.  There are days that we feel like it may be his last day because he gets so confused, his back legs don't hardly work anymore, he is skin and bones despite the fact that he still eats, etc, but then out of know where he will surprise us and perk up.  We just want to love our puppy well and do what is best for him, but also take into consideration timing for the kids (with us going to Boston again soon, I know that can bring some fear for the big kids, etc).  Will you please pray for wisdom to know what to do and that God would prepare all of our hearts for what the future holds?  

This is our sweet Tucker with his best buddy, Twinkie, who absolutely ADORES him! This is what she does much of the day, licks his back.  Please also pray that Twinkie doesn't die of a broken heart when Tucker's time is up :-(.  

Very brief update

Our apologies for not posting on the blog lately, life has been a little crazy here and we have realized that we have not had a moment to spare and write a post.  Kristi asked me, David, to write a quick post as to what has been going on in our lives, so here it goes.

A couple of weeks ago, we had one of those weeks when one thing after another breaks down.  First it was one of our two toilets broke, then my car decided not to shut off/keep running (even after I would pull the key out of the ignition), so we were busy with a few days of getting the car and toilet repaired.  Then, right after that Grace's little body broke down, she was sent home sick from school in the middle of the week and by 2:30am that Sunday, we were taking her to the ER, due to her breathing being labored and low oxygen saturations dipping much lower than we were comfortable with.  She was admitted to the hospital for four days and discharged in the middle of the week.

This is how we started in the ER...

...and this was 4 days later!  Almost back to her silly self!

Luckily, Grace was discharged just in time to model in the GiGi's Playhouse fashion show...

...in addition to Kristi and I being able to get out of town for the weekend to celebrate our 13th anniversary!!

Double anniversary celebration with great friends

Two days after we returned, Kristi was off to New York for a work meeting for two days and made it back home about an hour before Andrew's school play, in which he did a great job!  Then, Abigail had her school field trip on Friday, to which Kristi was able to join in on the fun.

Andrew's biggest fans...

Field trip at Brazo's Bend State Park

Then, yesterday we had the Rise and Shine 5k run at Grace's school, followed by Abigail's soccer game...

The girls ran the 5k

The boys (and mom's) ran the 1k...

...Then a brief two hour break before we went to the Houston Dash (Women's soccer) game where Abigail and her soccer team were able to go on the field and hold the flag for the national anthem.

I'm sure I am missing some things, but these are some of the reasons why we have not had the time or energy to post on the blog the past few weeks.  Hopefully, next week will be a regular post!

Have a great week!