Saturday, October 31, 2015
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!
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!
Monday, October 19, 2015
I heard a sermon a few months ago (I was very pregnant with Ty) that stuck with me. The preacher talked about people that required extra grace. He reminded us that God showed us unconditional love, forgiveness, and beautiful beautiful grace. He spoke of people who needed a little extra grace. The ones you want to push away or don't want to be seen with that, perhaps, need more grace instead of less. Those that need our attention, our time, our love. His words hit home for me. As an educator, I first thought of students. The really really annoying ones. The ones that were way immature, or whined too much, or were always causing drama. The student that wanted to stand at my desk and talk on and on and on... the random tap on the shoulder kid with important comments like, "Do you like cats? I like cats. I have 7 cats and one is about to have kittens..." cats. cats. cats. cats. Crazy cat lady - kid style. You get the idea. I sunk a little in the pew as I realized I have too often cut those kiddos off... shushed them... prompted them to go get busy or to go play or to go talk to friends. I have a heart for teaching and a heart for kids, but isn't there always that one that just kind of drives you crazy or gets under your skin. The stinky kid. The needy kid. I thought about all those, kids and adults, that I have judged... people who dressed different or acted different or seemed to come from a different world than mine... or at least a different class. This is real folks. Real ugly.
I am a God fearing woman who tries to do what is right. I try not to judge and to be kind to all those I encounter. Do I love, though? God is love and God is IN me, so shouldn't I be spilling that love out on to EVERYONE I meet? Not just those that are like me or from a similar background.
The point of the message I heard was that the very people we try to avoid are the ones who likely need extra grace - more love - those who deserve eye contact, undivided attention, and some genuine listening and loving.
Jesus loved everyone. Jesus dined with sinners. He is our example. He shows grace to me. Who am I to decide not to show grace to others. God's grace is love in action and if we are to be the hands and feet of Jesus, we must be love in action as well.
Color me convicted.
A dear friend gave me a Devotional recently. Out of the Spin Cycle, by Jen Hatmaker. Although I received it a couple of weeks ago, today I sat down to read for the first time. I started with the Prologue, which I would like to share here. It make me laugh and certainly struck home on several levels. I was most struck, I think, with her words about young mothers and what they need most is not to be judged, but to be given love, help, and advice. I love that she says our common ground is showing our children Jesus. And that Jesus is at Whole Foods and Wendy's. This reminded me that in my very chaotic, laundry-filled, messy-house, sleep-deprived state, I could use a lot of grace and certainly don't need judgement. It reminded me of all the other Moms out there probably need the same. Then I got to thinking it's not just moms... we all need a little extra grace.
Read for yourself and see what you think.
Posted by Meagan at 8:38 PM
Tuesday, September 1, 2015
Ty is playing a major game of catch up and he's winning!
This little guy turned 5 months old on the 24th and is growing in so many ways. He's added squeaking and squealing to his vocabulary. He has added a tooth to his mouth. He has even added two new talents - rolling from front to back and back to front - which he learned in about a weeks time! Way to use that big noggin' son!
We are still sporting the feeding tube, but we are making progress! Ty has discovered "the tube" and it's location so it has become a favorite toy. I often catch him pulling it, holding it, chewing on the end of it, or removing it all together. In fact, this morning when we got home from taking Ava Grace to Wee school, I discovered that after I started his feed, Ty had removed his tube and was feeding his car seat all the way home. Fun times! We have, however, made great strides. Ty will take an average 40-45ml when offered the bottle (when he is willing to take it at all). This is up from the 5-15 we had been stuck on for so long. We have also started some baby food at the recommendation of the feeding therapist. Ty doesn't complain, he just lets me stick it in his mouth and promptly spits it out. It doesn't matter how far I get it back in there - the kid is a professional spitter outer! But we keep practicing... we'll get there eventually. We are just praying we get there before they make him have a g-tube (directly into the stomach instead of through the nose) put in. Worse things could happen, but we'd like to avoid another surgery and skip that step if possible.
The coolest thing we have seen in recent days is the healing process on the inside showing proof on the outside. Ty's oxygen saturation varies throughout the day ranging from 100% to 90%. From the time he came home for good until about 2 or 3 weeks ago, his sats would drop every evening when he fell asleep. From about 6:00-10:00 (and I'm assuming any time he deep sleeps, although we don't put the monitor on him during the day to know for sure), his monitor would go off every 15 or 20 minutes as his sats would drop to 88, or 87 and then return to 90 or 91 where it would sit most of the night. Well, about 3 weeks ago, his monitor started going off less and less. In fact, this week it hasn't been going off at all! His sats now stay above 96 almost always - usually floating around 98-99! It is such a great feeling and we are praising God because we know this is proof that Ty is growing into his new pluming and God is healing him from the inside out!
In other news...
A fellow heart Momma and her hubby have started a non-profit organization called Project Heart! They are doing exactly what Chris and I have pledged to each other to do as well - spreading awareness and raising funds to further research and support families effected by congenital heart disease. Did you know that more children die from CHD each year than all forms of childhood cancer combined? CHD awareness and ministering to CHD families is a big cause and needs support in all forms! Please take a moment to check out the Project Heart website and find them on facebook to "like" their page! Click here to be directed to their website. They have some really cute shirts for sale too!
Thursday, July 30, 2015
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!
Friday, July 24, 2015
I know I sound like every other parent out there, but I have to say that it's hard to believe that Ty is already 4 months old! I thought time flied with Ava Grace! Time is going even faster with this little guy. Part of it was the period of hospital stays that makes us feel like we missed his first three months, but part of it is that life as a family of five is full and fast!
Ty has been busy making up for lost time at home. He spends equal time asleep as awake during the day and is growing like a weed. He sleeps 12 hours straight at night, but that doesn't translate to sleep for mommy and daddy because he is still using a feeding pump. He eats every three hours on the pump, so mommy and daddy have to get up to turn the pump on, and then off again after his feed - so we are up 6 times a night! All that eating translates to lots of growing. Ty weighs in at over 13 pounds and is holding steady on the small end of the growth chart around the 15th percentile.
His favorite thing to do is chew on his hands! He loves his hands and they are forever in his mouth. His second favorite new trick is getting a hold of his feeding tube and chewing on it! He pulled it out again yesterday, so we took advantage of it being out and took his "official" 4 month pictures here at home before we dropped a new tube.
Ty has also discovered his tongue and it spends a lot of time sticking out of that silly little mouth! He loves playing on his play mat and batting at toys. He is getting better at gripping toys and pulling them to his mouth, but still a work in progress. Head control has come a long way. We have been able to remove his head support in his car seat and bouncy seat, but he still has a long way to go. He does tolerate tummy time a littler better and although I wouldn't say he lifts his head to look around, he does turn it side to side while on his tummy so he can actually breathe - this is a big improvement. If I hold him in a seated position, he does pretty good holding his head up with minimal bobbing and the same when placed on my shoulder. He's getting better about not spitting up every time we hold him upright as well, so that helps. Every time I begin to think about him being behind I remind myself all he has been through and the fact that his chest has been cracked TWICE... if I were him I wouldn't enjoy laying on my tummy/chest or using those muscles to hold them up either!
Overall, we couldn't be happier with his growth and progress at home. Mostly we are grateful that we have been able to stay home and not be readmitted to the hospital. That is certainly a first in his little life.
Today we head for our weekly trip to Vandy. This time it is to meet with his geneticist. It will be interesting to see what they say.
In closing I would like to request prayers for two things. One, that Ty will make great strides toward eating by mouth. He still only takes a tiny amount by mouth before feedings and we'd like to see this improve rapidly. We start feeding therapy next week. Ty is the only thing holding him back from getting the tube out - as soon as he'll take his whole bottle we can get rid of that thing! I also would request prayers for my family as a whole and specifically my brother and sister-in-law. I will leave the details for them to share, but they are facing some life-changing battles and decisions today and in the coming days, weeks, and months. Please pray that God will work miracles for them and bring healing.
Thank you Lord for your abundant blessings. Thank you for using even the most confusing and scary situations to bring glory to your name.
Sunday, July 12, 2015
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.