Happy Birthday Princess Grace

It's hard to believe my baby girl turned one this week! Although, honestly it's also hard to remember life without her. She lights up our world in ways we never could have imagined. God truly blessed us with this special little girl. I took her for her check-up and she weighs 19 lbs. 7 oz. (25th percentile) and is 29 inches tall (50th percentile). She still has a slight heart murmur which her doctor she believes is innocent, but she goes to the cardiologist in one week just to be sure. She is small, but growing consistently!

Some things I love about Grace:

• She loves people. Grace is 100% a people person. She already thrives on others and loves to make people smile. She doesn't know a stranger and wants to be held by all. At the heart walk after it was over, I realized she never once was put in her stroller the whole two miles. She managed to go from person to person…she can work the system :)
• She's not afraid to get dirty. She is constantly covered in food or whatever she can find. If we go outside, Grace finds the dirt and dives right in.
• She's also quite the princess. She may be part tomboy, but she's also part princess. She loves playing dress-up and always has a necklace on of some sort. When I fold laundry, she takes various clothes out of the basket and drapes them around her shoulders like a cardigan. She loves tutus and loves her new boa! Her Uncle Eric and Aunt Jill gave her a beautiful bracelet for her birthday and she promptly modeled it for us.
• She speaks her mind. She has several words: mama, daddy, Jake, night-night, bye-bye, hi, thank you, but she also just jabbers frequently. When she's upset, she'll say long sentences of nonsense, but you know she's mad. When she's excited, she does the same thing.
• She's always on the go. She crawled and walked early and now she's running. She'll steal something of Jake's, get a mischievous look on her face, and be off! She keeps me on my toes.
• She loves Bible class…she loves Sunday mornings at church and she loves Wednesday mornings at Bible Study Fellowship. She loves the songs and claps along.
• She gives great hugs and kisses. Grace is super affectionate and gives wonderful hugs and kisses. Gigi taught her to blow kisses and she does that all of the time now! She also loves to kiss her dolls…she's already motherly with them.
• She loves to eat. She can put away more food than Jake usually, but still is very small. She loves her carbs especially. We're afraid she may be a vegetarian though…She spits out red meat like it's poison! She occasionally eats chicken, but prefers pasta, rice, and fruit. She also hates milk, but we're working on that and she eats a lot of yogurt! Her favorite thing in the world is ice cream. When she sees it, she gets so excited, she shakes all over :)
• Our world is a much better place because she came into the world one year ago on February 24th and we truly thank God everyday for blessing us with such an amazing daughter!

Being Silly…

Being coy…

Being nurturing…

Being studious…

Being a dreamer…

And being just plain mad!

Celebrating #1

Saturday afternoon, after the walk, all of our family that was in town came over to our house, and we celebrated Nash and Grace's 1st birthdays. Eric and Jill and Larry and Donna came from Marshall, Jose and Casey came from Dallas, Al and Jonesa live here, and then of course, Destin, Mark, and Nash as well as my parents were here. We had a house-full and a great time! Destin and I got Grace and Nash coordinating shirts and they looked adorable. The highlight was watching them eat their cupcakes. We put their high chairs side by side, and it was hilarious watching Grace delicately bite hers and Nash cram it in his face…the wonderful differences of boys and girls! They both got fun presents and enjoyed themselves! Grace got plenty of dress-up apparel and paraded herself around in a boa and tutu all afternoon. It was really special for the "twin cousins" to celebrate this first milestone together. Here's to Grace and Nash!!

Stripped down and waiting for the cupcakes

Nash dives right in!

Grace looks it over...

Starts slow….

Starts to cram it in…

She's a fan!

Nash agrees!

Lovin' her girl stuff!

And…crashes with Uncle Mark

Later with Gigi and Poppy

And with Nonnie

It's My Heart Family Run/Walk

Last Saturday was a wonderful day! About 55 of our friends and family met us downtown Houston for the It's My Heart Run and Family Walk to support Jake. Our team was called "Jake's Jets" and we had great bright green t-shirts which made us easy to spot in the crowd. This was our first year to participate in the event but definitely not our last. Altogether there were about 1,800 participants which is 1,000 more than last year. At last count, they had raised $138,000, but money is still coming in. Our team raised roughly $1600 (still waiting on the final total). The money from the event goes to awareness for congenital heart defects and towards research.

We were humbled by everyone that joined our team to support our family. We are so blessed with a wonderful family and friends that feel just like family as well. It was a beautiful day and after the walk, there was a big festival with music, bounce houses, food, and entertainment. Here are some highlights from the day:

Aunt Destin with Grace and Nash--Mark, Destin, and Nash came from Ft. Worth for the walk…it was also Nash's birthday weekend--it meant so much they spent the weekend with us!

Jake with Anna and Leah--two of his most favorite people!

Jake with JoJo--Jonesa brought three of her friends from work with her

Misty and me--we go way back to our freshman year at Harding…she was the first person I met at Harding and now our kids are friends!

Gigi and Jake--we realized there aren't pictures of Poppy because he was doing all of the picture taking!

The Starting Line

Jake's Jets

Getting a piggyback ride

Jake and Jackson

Ty and Jake--all of the CHD kids and adults wore red hats

Gracie with Aunt Casey

Trying to get a group shot of the kids

Jake holding Grace for the group shot

Becky with Leah and Kate--Kate was recently diagnosed with a CHD as well. Please keep her in your prayers as well! They're some dear friends of ours that had already planned to do the walk, but it took on more meaning for them with Kate was diagnosed.

Playing dress-up and dolls

Totally Rad 80s Party!

My friend Claudia came up with the idea to have a couple's murder mystery dinner for the young families from church for Valentine's Day this year. We found a game that could accommodate up to 30 people and that was church appropriate and decided to set in the 1980s. It turned out to be such a fun evening! Ty was so skeptical due to the fact that he had to dress up for the occasion…if you know Ty, you know he's not much for costumes. He donned a mullet wig, flipped up his collar, tight rolled his jeans, and really had a great time! I raided our attic to find 80s decorations, and Claudia and I made a balloon arch which was totally a la 80s prom.

The murder mystery game was fun because everyone really got into their characters which we had given them beforehand. The theme of the game was a high school reunion and one of the members of the class had been murdered before the dinner. Everyone's job was to find out the killer using the clues they had been given as well as by trying to get others to give up information. Our friend Justin ended up being the killer which was almost too obvious of an answer. He played the small town mayor gone bad and was perfect for the role. I'd love to play another one of these someday…I'd highly recommend the one we did though because it really was perfect for a big group.

I played the quirky psychiatrist/hostess of the evening in my tacky black dress I acquired from Goodwill along with my trusty black glasses. Much fun!!!

Shawn, Jennifer, and Claudia

Micah and Lisa--they came as the high school principal and teacher

Misty and Greg--they played members of a rock band

Ty as "Jimmy Skinny" and me as the psychiatrist

Larry, Ty, and Jessica

Claudia and I under our beautiful balloon arch

Becky and Glenn--the psychic and paranoid schizophrenic--they were hilarious!

And again...

Yesterday was Jake's check-up with his cardiologist. We had the echo first and he did great as he usually does. He knows just to hop up on the table and watch his cartoons as they do the test. He also knows if he's good, the tech will give him multiple stickers which is a big motivator for Jake! The last three times we've had the same technician so he's comfortable with her as well. After the echo, we wait about 30 minutes for the doctor to read the results and then examine Jake. She came in and listened to his heart and then told me I wasn't crazy for seeing his symptoms again. Basically the membrane on his aortic valve has grown significantly since our last visit in November. The aortic valve controls the direction of blood flow from the left ventricle to the aorta. The membrane causes a narrowing of the valve impeding the flow of blood. This causes a pressure gradient between the left ventricle and the aorta. Last May when we found out he needed surgery the pressure gradient was measuring in the severe range. After surgery, it was non-measurable but last fall it slowly got larger again as the membrane grew. In November, it was measuring in the mild range and the doctor anticipated surgery in a few years. Three months later, yesterday, it is already measuring in the moderate category and the doctor feels that means Jake will be having his third open heart surgery this fall.

Why didn't last summer surgery work? When the surgeon cut out the membrane last time, he did not cut it out by the root because in doing so he could have damaged the heart's electrical system leaving Jake with a pacemaker for the rest of his life. By cutting out what the surgeon did, Jake had a 70-90% chance (depending which statistics you read) that the membrane would not grow back and that he would be healed. Unfortunately, Jake falls in the 10-30% category as the membrane is back. His next surgery (probably this fall) will be more intensive and the surgeon will have to cut the membrane out more deeply. This gives Jake a very large possibility of having to have a pacemaker installed. This is not ideal as he would have it his whole life and would place limitations on him. I haven't researched what those limitations would be yet because I'm not ready to know.

We need to pray that the next surgery takes care of the problem. Even with the deeper resection next time, it is still very possible that the membrane can persistently come back again. If that is the case then he would have his aortic valve replaced in hopes by removing the valve, we could permanently remove the membrane. That is a last resort because since he's so young, he would have to have more valve replacements as he grows since the valve would be artificial and wouldn't grow with his body.

I asked if Jake has any limitations until the surgery and the doctor said, "no." Ty then asked if he could join a soccer league, and the doctor said, "no." She then explained by no limitations, she meant he could play normally with other children and "jump on the couch and be a three year old." He does have limitations in that he can't get overheated or play in the direct sun. Organized sports would be too taxing for sure. She said swimming would be ideal as it would keep him cool so I guess it's a blessing we have a pool in our backyard :) When he gets overheated, it somehow can cause the membrane to grow faster. I guess this goes along with his sweating. I guess it's also a blessing we're having such a cool winter.

We'll go back in May for another check-up, the doctor is hoping that the pressure gradient will not be severe enough to require surgery this summer but that we'll be able to wait until the fall. So, that was the appointment…We knew things were worsening, and it's good he's not having surgery next month, but also it is taxing on me to constantly be watching him and looking for new symptoms. It's a definite balancing act to try not to worry but still be wise in watching for signs. The doctor apologized for never having good news for us. She will be walking in the Heart walk we're participating in which I thought was so sweet of her! We talked to her about It's My Heart (the support group) and she said she supports the group because it is so vital to get more information out to parents about congenital heart defects and to research more about CHDs. Part of the issue with Jake's condition is there isn't a lot of data out there to tell us what to expect. Dr. Altman said in 10 years we'll know so much more.

This makes the heart walk on the 20th so much more important to us! We have a big group of family and friends walking for Jake and we're so grateful for the support! If you still want to walk, let me know ASAP! Please just keep Jake in your prayers. Pray for healing…pray for wisdom for the doctors and surgeons…pray for God's perfect timing for the next surgery…pray for Jake's strength and energy level…pray for wisdom for Ty and me as we monitor Jake. Thanks for the prayers!

Happy Birthday Dear Jake!

Happy Birthday (yesterday) to our sweet Jake. He seems all grown up all of the sudden and very three. We are so blessed that God has given us Jake…he's a kid who is quick to smile and give hugs, so gentle in nature, and so silly as well. He makes us laugh continually! His favorite things are Mickey Mouse Clubhouse, trains in general, Yo Gabba Gabba, cookies, pizza, his plasma car, matchbox cars, puzzles, making silly faces, playing outside, singing, and taking things apart and putting them back together. His favorite people continue to be his grandparents: he pretends to visit all of his grandparents daily by driving to different spots in the house on his little car. Gigi and Poppy "live" in the laundry room, Pops and Nonnie (and their cows) "live" in the office, and Jo Jo and Papa "live" one particular spot in the living room. His highlight of church on Sundays is that Jo Jo and Papa are there! His best friend is Jackson who I realized last night at his birthday party is really his only "boy" friend his age. He's generally surrounded by lots of girls!

Jake loves going to Mother's Day Out once a week and loves his teachers at Kids Edge. He's learning colors, numbers, and letters and according to his teachers loves chapel time when they sing. He also loves his speech therapist, Brittnie--he gives her a big hug when he gets to speech and can't wait to talk with her. She's helping his speech and also his confidence level. He still has quite a speech delay although we're making breakthroughs each week. I'm so proud of Jake for how hard he is working in this area. It can be very frustrating somedays, but you can see the wheels in his head turning and how hard he works to say certain words.

I got his cardiology appointment moved up to this coming Monday so we'll check and see what is going on with his heart. His pediatrician thinks his murmur is definitely louder again and the sweating continues as well as his marathon naps so I'm ready to get another echo and have him checked. He's still very proud of his scar and loves that daddy has the same scar too.

I am so proud of Jake and can't believe the amount of love it's possible to have for your children. My heart swells every night when I tuck both he and Grace in and I realize how blessed I am that God has allowed me to be their mother. So, happy birthday Jake!

He had his party at Chuck E Cheese last night and had an absolute blast with all of his friends! Here are some highlights:

Waiting to meet Chuck E Cheese

Playing a game with Jo Jo

Gracie and Papa at the party

His train cake…I tried to make one myself and it crumbled…so that morning I rushed to HEB for this one only to have it get smashed on the way to the party…It still tasted good :)

Jake and Chuck E Cheese--not too sure about him…

Dancing with the triplets and Caden

the birthday crown

Jake with Lillie Beth and Jackson

Giving his sister a kiss!