An update on all things Hooper...

Finding time to post always proves challenging, so I'm taking some times this Saturday morning to update everyone on the latest goings on the Hooper household!

This guy is 7 months old - already!

 Ty enjoyed his first trip to the beach this month.  He wasn't crazy about it, but he thought the waves were funny as long as he didn't have to touch the water.

 Ty had two MAJOR accomplishments this month along with many other smaller accomplishments.  The first is that we have KICKED the feeding tube!  We have only had to drop a tube once to catch up on fluids and, although some days are better than others, he is meeting or exceeding his minimum daily calories most days!  He is up to 17 pounds and if his growth stays on track at his next weigh in, I think we'll be officially free of the tube (hopefully forever)!

 Ty's other BIG accomplishment is sitting up!  He can't get himself into a sitting position yet, we are working on that in therapy, but he is doing GREAT at staying up and playing once you put him in a sitting position!  He loves being up where he can see everything and play with his toys!

 He LOVES bath time!

This is what he does every single time I take him out of the bath tub!  So sad.

Ava Grace makes him laugh every day!  She loves him... a lot!  She wants to hold him, "help" him, and TICKLE him!  He is the most ticklish baby I have ever met!  

He loves his Lily too!  True to her personality, she is much more of a practical helper.  She'll hold him and talk to him sometimes, but for the most part she does her thing and lets him do his.  She is great to keep an eye out for him, though, and help him get his paci or protect him from Ava Grace when necessary, lol.

Ty has started eating baby food and is getting better and better at it!  We have monthly feeding therapy to keep track of how he is doing.  He likes sweet potatoes the best.  This week we experimented with a graham cracker and he really liked it!

This big sis has been growing too!  She loves school this year and loves her teacher.

Her independent streak continues to grow!  She likes to dress herself now and that includes picking out her clothes, shoes, AND accessories.  She is really into shoes and clothes.  She says things like, "I am so fashion" and "I am stylish.  I am the fashionist girl in the whole city."  

Ava Grace is big time into crafting.  She wants to cut, glue, and paint everything.  She loves helping me cook and continues to be such a good eater!  She loves vegetables - We keep a veggie tray in the fridge and it's her go-to snack.  She also really likes just about any fruit, all meat, and will eat most anything I cook.  She even likes slightly spicy things - which totally fits her personality!  She has a sweet tooth as well, though not as big as her big sisters, and a passion for Popsicle!

 She dresses up like a princess on a regular basis and often asks to go out dressed up that way (sometimes this turns into a battle).  She was thrilled when we went to see Cinderella at TPAC and I allowed her to wear her princess dress out!

She resists naps with a passion, but if you can get her still she will crash and when she crashes - she is OUT.

Ava Grace LOVES her big sister and loves to play with her big sister.  Their play time is often cut short by a melt down because Lily isn't doing as Ava Grace instructs her to do, but it never fails, they are back at it in no time.  Lily is infinitely patient with Ava Grace and just the best big sister ever.

Lily is learning to play the clarinet, following in the footsteps of her Aunt Sarah, Aunt Gina, Aunt Jodie, and Great Aunt Jan!  In fact, her Aunt Jan gave her the clarinet that three generations of Hoopers learned to play on and gave her her very first lesson.

Lily still loves playing volleyball and has gotten really good!  She can serve overhand like a pro now and dives for balls like a champ!

Lily was recently invited to join the Junior Beta Club as well!  We are so proud of the young lady that she is becoming!

Lily loves watching the food network and is an aspiring chef!  We have recently turned her loose in the kitchen and she is learning to be more independent in her cooking!

Lily is still sweet, very innocent, and we are soaking up the remnants of her little-girl days before she heads to middle school next year.

 That pretty much sums up the kiddos!

 Please continue to pray for my mom.  She is officially done with Chemo!!!!  She will meet with her surgeon this week and most likely have surgery within the next two weeks.  Her tumor is less than half a cm now!  We praise God for the miracle he is working and pray for complete healing!  We want the cancer gone and to stay gone!  After surgery she'll have several weeks of intense daily radiation.  God provided her with the days for medical leave until her retirement day in the spring, so thankfully she can rest and focus on recovery!  Please keep her close in prayer for healing and recovery!  Also please pray for my Dad as he cares for her!

Also...

Mark your calendars!  Breakfast with Santa will be coming Dec 12 and will benefit our fellow heart family's organization, Project Heart!  Money raised goes to CHD research!  Check them out on Facebook under Project Heart and order a Project Heart tshirt!  (Ty and I love ours, but I don't have a picture of us wearing them yet - coming soon!)

I think that about sums it up!  Hope everyone has a happy halloween and a great weekend!

Blessings abound...

I find it harder when home (as opposed to the hospital) to sit down in front of the computer to update.  With all these cute kiddos running around and the usual home-making stuff on the to do list, time is precious and spare time is hard to com by.  However, I know that several of you out there don't follow facebook, so I am sure you are wondering what the latest is on Ty.  This week he graduated to the feeding seat so that he can now sit at the dinner table with us!

It wasn't as exciting as he thought it would be... either that or all the dinner activity and conversation was exhausting. He is turning into a very social baby and wants to be around us.  He is still doesn't care to be held a lot - part of his disposition and his history of starting life in an isolette not being able to be held, I'm sure. He has been in his swing near the table while we eat dinner every night, but that wasn't close enough to the action and the last few nights he was "complaining" about missing out.   So we got the feeding seat set up on one of the dining room chairs and now he is happy to be included in dinner conversation.  Ava Grace, who gets to sit beside him, is the most excited about the new development.

Yesterday Ty had his 4 month well visit.  He checked out just fine and is growing BIG TIME.  He is weighing in at over 14 pounds and has moved up to 19% and 21% on the charts for height and weight.  We are going to see a craniofacial guy because his fontanel is a bit on the small side, but it shouldn't be a problem as long as it stays open to one year of age.  We are getting it checked out just to be certain that all we need to do with watch it.

Ty also saw his geneticist a few days ago.  That visit went great as well.  They were very pleased with his appearance and he isn't showing any outward signs of problems from his chromosomal abnormality.  There is such little research out there on males that have 45x/46xy with a dicentric Y, but we believe that Ty will likely have little or no effect from his genetic mutation.  He will possibly be sterile, but that's not a certainty.  His heart was likely due to his genetics, but we are already dealing with that.  They still believe that although so rare on paper, this may be one of the most common genetic mutations out there - it just has such little effect that most people probably assume they just have reproductive issues for an unknown reason.  Without testing for other issues, in this case genetic testing because of his heart, they believe most people who have it just never discover it. We are going to an endocrinologist and a urologist to check him out thoroughly on the inside and make sure everything is as it should be.  With all the testing and scans he has already had in his little life, we don't expect surprises, but want to be thorough.  He will be followed by all of these doctors as he grows to make sure we stay on top of any arising problems.

For those of you keeping track, Ty is now being followed by 7 different types of doctors!  He has a cardiologist, cardiothoracic surgeon, pulmonologist, urologist, endocrinologist, craniofacial, and general pediatrician.  And he starts feeding therapy tomorrow.  Oh. My. Word.  My kid is well looked after.  Thankfully the little guy knows no different and just rolls with it.  

Enough about doctors...

At home we have been soaking up the love.  The last four months have been a blur for all of us and it is hard to believe that summer break is over in a week!  We are thankful that we got ANY days at home as a family, but it's hard not to wish we could enjoy a few more before work starts again.  We have been making the best of our time playing the days away.  We still live in a bubble for Ty's protection for the most part, but we have begun to venture out a little and that has been fun too.

 We have found lots of fun things to do at home though.  Thanks to Pinterest, we found this new activity that is a favorite of Ava Grace's and mine too!  Freeze little dollar store dinosaurs (or princesses, or any other kind of little plastic toys) in layers of a block of ice.  Then equip your little one with "tools" (we used a grapefruit spoon, salt, and syringes) to rescue the toys!

This was new and exciting for Ava Grace and afforded this mommy a full 45 minutes of time!  That's right moms, she played on her own for 45 minutes straight!  Mom win.  You're welcome.

We have spent quite a bit of time on our front porch.  We love our porch swing and have watched a few thunderstorms blow in, a few sunsets, and just enjoyed good swinging and conversation out there.

 We have also ventured to he pool a few times.  You know I am a water bug and just couldn't stand the thought of the kids not swimming this summer.  We mostly go to the indoor pool at the civic center so that I don't have to have Ty out in the heat and so I don't have to sunscreen Ava Grace's sensitive skin.  We did, however, catch one cloudy and sprinkly day that was perfect for a dip in the outdoor pool.  It was cool enough and there was enough thick cloud cover to not worry about heat or sun screen and we took our nephew John Harris with us!  So fun.

(Ava Grace had pringles for the first time in her life! lol.  Quack!)

Overall, we have had several days of summer fun.  We count each and every day a blessing.  I look at Ty several times a day and thank God that he is here with us.  I can't put into words fearing for your child's life, but I can tell you it gives you a deep appreciation for every second you get to spend with them.

My brother and sister-in-law are facing some big decisions right now and need lots of prayer healing and good health.  God has already answered prayers and worked miracles in front of our very eyes, so we praise Him and ask for continued prayers from you.

Last, but not least, I have to share a couple of Pinterest recipes I tried and we loved!  Click on the pictures below for the recipes.  They are both EASY, QUICK, and DELISH!  As in faster and cheaper than actual take-out.  The whole family liked it.  Another mom win for sure!

2 weeks... it really happened

 We have officially been home for two weeks.  14 whole days.  There was a time that 14 days straight at home was a dream and now it is a reality and we are still going strong.

Our days are full and so are our hearts!  We have had quite a few doctor visits, but in between those we are enjoying being home so very much.  Ty is doing awesome!  His sats are stable and although he still breaths too fast off and on, it is no longer the constant struggle.  Every now and then we catch him with a respiratory rate of 80-90, but for the majority of the time he stays in the 60, which is really good for him.  He still retracts some when he breaths, but they expect the high rr and retractions to get better as he grows.  He also isn't doing well feeding by mouth.  He can, but doesn't seem to want to  - please join me in praying that he will simply decide to start taking his bottle!  In the mean time, we are still on the feeding pump.

We have had to adapt as having Ty around changes quite a few things.  He isn't quite ready to be out and about and is still recovering.  We also want to avoid having him outside in this extreme heat and humidity, so we have tweaked our summer activities from the norm.  We are staying home and spending less time at the pool, but we are still having fun!

I am slowly helping the house "recover" from three months of neglect as I dig out from piles of laundry and empty bag after bag of stuff we had packed to take to or brought home from the hospital on our many trips back and forth.  The girls have been enjoying lots of craft projects, which they both love!

Yesterday we created a little indoor herb garden.  Ava Grace checks about every two hours to see if there are leaves yet, bless her little hopeful heart.  Today we are going to make peanut butter bird feeders so she can see a more rapid result to one of her projects!

Ty has been cleared for Tummy time, but still has lifting precautions (he has to be scooped up from bum and head instead of under the arms).  He has been working on some catching up too!  He's a little behind, but we are making progress.  His head control has improved enough to remove the newborn head support from his car seat and swing, but he still doesn't lift his head when placed on his Tummy.  Instead, he acts like we are absolutely crazy and lays there, face down, waiting and fussing.  He'll get there.  We have also been working with him on grasping and swatting and he's coming right along!

Lily is our aspiring chef.  There isn't much on TV these days that  a family can watch together, but we have discovered that we all enjoy several shows on The Food Network and they are (mostly) appropriate in content and language.  Lily's favorites are Chopped, Next Food Network Star, and Master Chef.  She genuinely loves them and has taking a big interest in cooking.  I have always encouraged the girls in the kitchen and they almost always "help" me when I cook, but I have realized Lily needs to take on more of a leading role in the kitchen.  Sometimes kids are capable of so much more than we expect if we just loosen up and let go of the control!  This is particularly hard for me in the kitchen, but yesterday we gave it a go.  I sat at the bar and simply instructed as the girls made a HUGE batch of from scratch Tennessee Spice Muffins together!  (Did you know you can freeze muffin batter in muffin cups and bake them straight from the freezer later?)  We stocked the freezer with muffins yesterday that will be oh so yummy this fall on cool school mornings!  

 The girls have enjoyed "coaching" Ty.  Here they were coaching him through Tummy time and showing him what to do!  It is so fun to watch all three of my littles enjoy each other!

 This week we plan to enjoy more time at home adjusting to our family of 5.  Ty has cardiac clinic on Tuesday and he will get an EKG and an Echo, so I am excited to see those results.  Ava Grace has a dentist appointment for a second opinion on a dental issue, so I am hopeful for good results there as well!

Outside of our doctors appointments we plan to do a lot more of this!  Cuddling, snuggling, crafting, cooking, and maybe some indoor swimming too!

And last, but not least... I have some news.  I saved the BEST news for last, of course!!

This beautiful girl, my precious step-daughter, is now also my sister in Christ!  Lily got saved last week at revival at her Mom's church.  I can't even put into words the joy in my heart.  Thank you Lord for your grace, your love, your sacrifice, your forgiveness and your gift of eternal life in heaven.

Happy Sunday y'all!  I hope you each have a blessed week.