I appreciate your love, brother, but I have a booger situation here.
I appreciate your love, brother, but I have a booger situation here.
Disclosure: I received product from Orgain for sampling purposes. I am also an affiliate for Real Food Blends. I’m including these products below because C has used them and I believe in the mission of both of these companies.
Stress runs high during the holidays! When you have a child with special needs, packing, traveling and attending holiday events can be even more stressful. When I’m packing my tubie’s supplies, I will admit to thinking that it would be easier to just stay at home! Here are five tips to avoid that feeling this season:
Is there anything better than the wonder in a child’s eyes during the holidays?
My plan was to take a nice picture of these two sitting next to each other.
Reality? They ran wild, got sweaty, started disrobing (Baby Jo) and got grumpy (C). Here is Baby Jo trying on every cardigan she owns to perfectly complement her dress, and C animatedly telling a story about how silly she is.
Sometimes it’s fun to revisit a sensory activity that was once difficult. C baked cookies with his nana! I was amazed to see how much progress C has made with his tactile and auditory responses.
He touched all the ingredients, mashing the butter and letting the sugar fall through his fingers. When it came time to use the hand mixer, he didn’t get scared! He stood next to his nana as she mixed the dough. He rolled the cookie dough in his hands and dipped it in sugar.
“Mommy, I have to fix the battery on my truck! I have to change the oil, too.”
This child has me guessing about what he will grow up to be. The way he inspects how things work and memorizes types of cars, it’s entirely possible he will become a mechanic.
There was something about the holidays that was magical. The snow falling softly. The warm cup of coffee in hand as we critiqued neighborhood Christmas lights. The gatherings of friends and family.
I have to say, the holidays no longer feel magical. I think a lot of the “magic” of life is gone now. These days, my world revolves primarily around C’s health, therapy and feedings. Everything else just kind of…happens.
Disclosure: This post includes affiliate links and I would make a little money if you made a purchase after clicking on them. C has this organic blended diet habit that I need to support!
C has always had difficulties with food, and I wanted what little food he would eat to be the best food I could afford to offer him. I started buying organic snacks for him when he was little. When he had his g-tube placed at age 2, he was put on Pediasure. Four bottles of Pediasure per day through his tube. I was mortified by how much sugar he was getting, but I felt helpless because he needed those calories to gain weight and catch up on growth.
Friends, I need a little grace right now.
I may look at your message, only to be interrupted before I am able to reply.
I may not be able to answer your call, because C is acting out.
I may forget something that you asked me to do, because my mind is racing with therapy ideas and tasks.
It’s often said that children with sensory processing disorder (SPD) have difficulty with boundaries. They may seek input and, not knowing exactly where their bodies are in space, not be aware of that “personal bubble” that most people respect. They also struggle with sleep issues. Sleep problems combined with boundary issues make for a lot of long nights!
“Teeeef!” Baby Jo stands at the bathroom door and yells for her toothbrush. There are few things my children enjoy more than brushing their teeth. That does not include an adult helping them to actually brush their teeth, but a form of tooth brushing that is more like chomping on said toothbrush.
Special needs parenting requires more patience and perseverance than I sometimes think I can bear. I’ve been doing this for long enough that I really don’t know why the setbacks surprise me. Maybe it’s because they come on so quickly, seemingly out of nowhere. We’ve barely gotten into a routine with the good progress and we’re struck with a sudden downturn.
“I hope you have a child just like you someday.”
What is that? A curse? Because it worked.
My 3-year-old son and I are one soul inhabiting two bodies. We are basically the same person. He is me – in the body of a 3-year-old boy, that is.
Do you ever have one of those holidays when everything goes wrong? The kind of day when all you can do is shrug your shoulders, laugh and say, “Maybe next year?”
Halloween 2014 is our “maybe next year” holiday.
First the power went out. Then Hubster was stuck at the car dealership with our only vehicle while it took two hours longer to fix than they anticipated. It got cold in our apartment and the kids, who should not be that attached to electronic devices, were somehow obsessed with the fact that their favorite WiFi-based iPhone apps and TV didn’t work. I portioned out C’s morning meds in the dark. The lights came back on and moments later, Baby Jo vomited exorcist-style down the entire hallway.
When did this happen, C? I remember spending countless hours rocking you in that recliner while my bladder was about to burst. Yet I never moved, because that was the only way we could get you to sleep.
Here you are, 3.5 years old and so tall. Your long limbs dangle when I hold you. When did you suddenly have legs for days?
It was a typical day at C’s weekly therapy for sensory processing disorder. We saw his occupational therapist and speech therapist today. The only difference was Hubster joining me on his day off. Oh, and C’s therapists think he can go down to one appointment per month instead of one per week.
My son has been all about holding the door open for people lately. He likes to wait for anyone nearby before closing the door and I’ve noticed that he waits even longer for women.
When our family came back to campus after a day out, he held the door open for a female student. She thanked him and he waved goodbye to her. As she walked into the stairwell, he said, “There was a guy that came in here.”
Toddlers are so easily entertained! It’s fun that we’re able to simply take C and Baby Jo to Cabela’s for them to have a great time.
C was really excited about the big fish, particularly the ones in the tunnel.
Baby Jo loved the loud music coming from this video game. She kept running up to it and pressing the button, then she and C would have a dance party!
My son’s elaborate imagination is freaking me out.
When we turned out the lights tonight, he looked toward the corner and told me that he saw a ghost. Then he told me that he saw two ghosts!
I believe in ghosts and have had my own experiences – so has C. When he was a baby, he would look at something that wasn’t there and start smiling and laughing. It freaked me out then and he’s freaking me out now!
My Baby Jo is tender-hearted, always thinking about the people she loves. C mentions that he’s thirsty and she runs to find his water. I say it’s time to go and she gets everyone’s shoes out of the closet.
For as long as she can remember, she has witnessed us tube feeding C. Three or four times each day, we gather his syringes and medications, hook up the extension and start pouring his blended food into the syringe. My sweet 17-month-old daughter wanted to help me tube feed her big brother tonight.
Sometimes I look at these two and am so thankful.
Thankful that they love each other so much.
Thankful that they enjoy playing together so much.
Thankful that C is thriving, even when some days are difficult.
Thankful that they are growing, growing, growing.
We actually had a family weekend and I cherished the time we had together. It was the first Sunday in about three weeks that Hubster didn’t need to work.
I put Baby Jo’s hair in pigtails for the first time. It lasted for about 40 seconds.
This shop has been compensated by Collective Bias, Inc. and its advertiser. All opinions are mine alone. #CollectiveBias
When C had his NG-tube and then his g-tube placed last August, I did not anticipate all the other “stuff” that comes with having a tubie. I have never cleaned up so much vomit in my life. For a while, it felt like we lived in a scene from The Exorcist. I did my best to clean the surface of the carpet and tried to forget about what was lurking deep within our carpeting.
As you reached over and pulled me into a tight hug at bedtime, I held you close and realized how well you are doing. I no longer hug you tightly and only feel bones. Your hands have a little more padding to them. There’s a layer – albeit tiny – of body fat between my hand and your ribs. You are growing taller every day, reaching new heights and forcing us to put certain items higher to keep them out of reach.
This shop has been compensated by Collective Bias, Inc. and its advertiser. All opinions are mine alone. #CollectiveBias
I know we’re not the only ones who eagerly await the return of football season each year! C has been talking about football for months, Hubster has been plotting his fantasy football picks and I’ve been looking longingly at my Green Bay Packers jersey. Well, wait no more – football season and tailgating have returned! I like to go to Pick ‘n Save, a Wisconsin grocery, to stock up on ingredients for our favorite tailgating recipe, Beer Cheese Dip. It’s a fan favorite and it’s no wonder why. I mean, beer? Cheese? Sounds like Wisconsin perfection.
When we switched C from a formula diet to a blended g-tube diet, we were left with a huge stock of Pediasure that we didn’t know what to do with. It sat in the closet for a long time, a reminder of the pre-tubie days of begging him to drink some and the NG tube and early g-tube days of formula feedings. I noticed in a Facebook group for local moms that there was a woman whose child was dealing with a failure to thrive diagnosis. I read the desperation in her post, that emotion all too familiar for us. I immediately thought of all of the Pediasure collecting dust in our apartment.
When the EEG with video monitoring revealed abnormal activity in two parts of his brain last month, C’s neurologist ordered an MRI to check for structural abnormalities. He came down with the cold that wouldn’t stop and we rescheduled twice, but he finally had that MRI on Monday morning! As usual, he handled it like a champ.
C sized up in shoes and pants this week! That in itself is a HUGE, joyous event for a tubie parent. It’s a cool, rainy day today and he’s sporting these Gap skinny jeans with a v-neck tee. I can’t handle the cute hipster toddler-ness!
The tension in his little body is visible. I know it is going to be a difficult day. Today, he will be aggressive. It will be difficult for him to follow direction, because auditory processing will not be easy. Motor planning will be harder today so I expect him to run into his sister, body slam me, and roll around on the floor in frustration.
Is there anything better than witnessing the love your children have for one another? The sibling bond that these two share is so amazing to me. No matter how much they fight (and that is a lot!), their friendship grows every day.
I sat here staring at the blinking cursor for several minutes, realizing that even after a nap I am having a difficult time processing all of this. I barely slept last night as I kept vigil over C’s bedside. Every time he spasmed or twitched, I pressed that little button that they told me to press. I was nervous about going to sleep and missing anything. C’s pediatric neurologist came in this morning and gave us the report: it was an abnormal EEG without seizures.
Disclosure: This post includes an affiliate link. Any proceeds made from this link goes to our son’s continued medical care.
This time last year, C had been in the hospital for a few days to receive a NG tube. Then he went back two weeks later for surgical G-tube placement.
C loves to talk all things cars. He puts his heart and soul into his favorite subject. Loving cars includes talking about going left, right or straight, slowing down and fancy cars. The list is endless! He really likes to talk about this stop sign near our apartment.
It took me by surprise when they found abnormal brain activity during C’s sleep study in March. We were there to see why he wasn’t sleeping at night, thinking that it was related to tonsils or adenoids. The tonsils and adenoids were okay, but the abnormal brain activity was alarming. Apparently, it’s the type that is normal in 20 percent of people who experience it. I had a gut feeling that my C wasn’t in that 20 percent. We proceeded with an EEG in April. Those results were normal. Despite capturing some of his staring episodes on video, his pediatrician instructed us to wait and see. Should the episodes become more frequent, we would pursue further testing.
I looked at the calendar today and was shocked to see that it was August 13th. Wait, what?! I think I just lost an entire week of my life. Our family anthem the past week should have been, “Another One Bites the Dust.” First Baby Jo, then C…or C then Baby Jo then C again…I can’t even remember. High fevers, colds, cranky, tired children. Then I had a 103 degree fever for two days. It’s been a treat! Here are a few pictures from our past week, though. There were some cute moments amidst the sickness.
My little man loves deep fried cheese curds from Culver’s. We indulge him in his favorite treat sometimes. I mean, could my tubie like anything more caloric? Win!
My son has always refused every beverage but water (and ice cream!). He has been doing very well in his feeding group therapy. They are exposing him to a wide variety of foods and challenging him to take a bite of each type of food. Before this class, we had him licking each food. He’s moved up a step! He has also been drinking juice with the group. I haven’t purchased any juice for home yet, because I haven’t seen this child drink juice ever and I didn’t want another thing to go to waste. He saw his favorite juice as we were shopping last night and said, “We bring it home and I drink it from a cup.”
If only these two played so well together all the time…
A few years ago when the Green Bay Packers opened up sale of their stock, Hubster had to invest. Being a Packers shareholder was always a dream of his and even though we didn’t have much, we scraped together some money and purchased a share. That share is framed and hangs proudly in our apartment.
I found myself sitting in a break room with five or six other parents. Normally, I leave for a few, brief moments of alone time during C’s group therapy sessions; but they have an iPad set up so that we could watch this session. I was intrigued enough to stay.
C loves to talk about Papa’s truck. Oh the excitement when he got to help wash Papa’s truck!
It was this time last year when we first met with a pediatric GI doctor. They broke the news to us that C had fallen off the bottom of the BMI chart. Feeding therapy was the plan, a g-tube was only mentioned as the worst case scenario. The thought of a feeding tube for my toddler was terrifying.
Disclosure: As a blogger for Tastefully Simple, I was provided product and compensation for this review. The thoughts and opinions below are entirely my own.
A few years ago, I used to enjoy spending hours baking. The measuring, mixing and creating was a source of stress relief. I felt more relaxed after a few hours spent in the kitchen. The beautiful treats that I created were just a delicious result of my stress relief. Bringing two children into the equation has effectively ended those leisurely days of baking to my heart’s content. Sometimes I yearn to get creative in the kitchen, but am stumped by my lack of time. Tastefully Simple solves that issue for me.
My little man is so excited about the release of Disney’s new Planes: Fire & Rescue movie that he has memorized the Disney Planes trailer. I managed to capture it on video tonight and although it’s a bit shaky and you get to listen in on some of Baby Jo’s bedtime crying, it’s still fun.
This shop has been compensated by Collective Bias, Inc. and its advertiser. All opinions are mine alone. #CollectiveBias
There are not many things that my son loves more than his vehicles. He may only be three years old, but C can spot the same model vehicle as ours from the other side of the parking lot, tell me how to get to Nana and Papa’s house, and name each of his planes and cars as he carefully places them into their basket before bed. C’s interest in planes and cars has also sparked his passion for learning. Just like Disney Planes’ Dusty Crophopper learning to harness the power of Radial G, C likes to soak in knowledge about his vehicles.
Here’s my little tubie boy taking care of a couple things at once: listening therapy and a tube feeding! Because he simply wouldn’t be a mini-me without multitasking.
I know that I spend too much time thinking about the future. I just can’t help but wonder what the future holds for my special needs son.
When C has difficulty listening to directions, I wonder how things will go for him in school. Language and auditory processing is difficult for him with his sensory processing disorder. I wonder how he will handle the pace of a classroom. What extracurricular activities will he be involved in? Will he be able to keep up with directions? Will he process language and turn it into a motor plan quickly enough to participate in his favorite sports? I pray that he won’t be bullied for being slower with processing. The thought of it alone shatters my heart into a million pieces.
Hubster and I snuck away for a few days of vacation without the kids. Baby Jo stayed with my in-laws, while C spent time with my parents. They missed each other a lot and it was so sweet to see their reunion tonight. C was jumping up and down, squealing with excitement. He kept kissing and hugging his baby sister and on the ride home, this happened.
I took this video almost two months ago and I can’t believe I didn’t share it with you here! I love how these two play together – you know, when they’re not fighting. They love playing with their tea pot, and here they are having a tea party together.
Sometimes you need to run around with your cousins until past your bedtime. Sometimes you need to fall asleep immediately on the car ride home; and sometimes you need to sleep sideways in mommy and daddy’s bed until 9:30am.
C had a great weekend.
We’re 10 months into this g-tube life, and I’m getting smarter about everything. I’ve started preparing now for our vacation that starts on Sunday! So far I’ve made 8 of the 18 feeds that C will need while Hubster and I are away. Doing a little at a time takes the pressure off instead of food prep turning into a 4-hour affair the night before vacation!
Hubster and I went away for the weekend to attend a wedding. The kids were so excited to see us when we came home. They had lots of fun with Nana and Papa, but C was very ready to be home. He’s my little homebody! When we got home, he declared that he was going to go for a walk. He even decided to put Baby Jo’s shoes on for her! He’s our little helper.
Baby Jo wanted to walk to the car on her own. C proudly took her hand and they walked down the hall together. I hung back a little and simply admired the sweetness of their friendship.
Today I had the crushing realization that my son is different.
No, I’m not delusional. I’m reminded that he is different 3-4 times each day when I administer his tube feedings, every week at his OT and speech therapy for sensory processing disorder, whenever I schedule his listening therapy into our day, and when I glance at the counter and see the stacks of syringes and extensions.
C has been having individual occupational therapy sessions for his SPD for two weeks with the same therapist that led his group sensorimotor therapy that he enjoyed since February. His speech therapy was finally approved, too, so we can address his language processing and feeding needs. He had his first session with both of them together this week. Things went quite well. They pushed him and he rose to the challenge. He was close to going over the edge at one point.
My boy loves to work on puzzles and he was in need of a bigger challenge. His aunt and uncle gave him a few puzzles for his birthday last month, and we’ve been working on them regularly. This large floor puzzle with vehicles is C’s favorite and we play it when Baby Jo takes a nap. He recently asked me to help him. When I said I was busy with something, he went ahead and did it himself!
C was putting together his puzzle and must have had an epiphany that terrified him: everybody’s got armpits.
In many households, this would be a normal lunchtime picture. Brother and sister eating at the table together, each of them feeding themselves their food.
In my home, this moment was enough to bring tears of joy to my eyes. My tubie with sensory processing disorder is doing a few amazing things in this picture:
The last detailed update that I gave you all about C’s health was when he had an EEG done to look further into the brain activity that was picked up during his sleep study. I didn’t update you on the results because I was a little confused by them. The EEG was normal; however, I showed a few videos of C’s episodes to his pediatrician. The pediatrician said that if he didn’t have a normal EEG, he would order one based on the videos. He recommended waiting to see if these episodes continued or started to occur more frequently. If so, then we’d look into a longer-term EEG and he’d have to stay in the hospital for it. If not, then we can just move forward. I haven’t noticed any changes in the past month.
Now that C has turned three, it has become even more apparent that we’re but one soul inhabiting two bodies. He is super chatty at bedtime, just like me, and talks my ear off about anything and everything his little three-year-old mind dreams up. Here is a sample from one of our bedtime conversations:
We recently had a photo shoot for C’s 3-year and Baby Jo’s 1-year pictures. A big thank you Kymberly Carlson Photography for her patience with my wild, uncooperative children.
I wanted her to have a monkey smash cake, reminiscent of C’s!
“Sister, you’re my best friend, best friend, best friend.”
There’s never any doubt that C absolutely adores his little sister. He lights up when she enters the room, asks her to play cars with him and crawls around the apartment with her. He can make her laugh harder than anyone else.
Disclosure: I received product from Tutus by Terrah and Little Bug Shoppe for use at the kids’ party. The thoughts and opinions expressed below are entirely my own.
C is simply obsessed with Disney’s Cars. A Disney Cars birthday party was the only way to go this year. Lightning McQueen, Mater, Francesco, Finn McMissile…the boy is all about his favorite Cars characters. Baby Jo…well, without a preference at the age of one, she was just along for the ride!
Welcome to the second installment of “C Says the Darndest Things.” The bigger he gets, the more I’m shocked at what comes out of his mouth. I don’t know where he gets this stuff! *looks around sheepishly*
While having trouble fitting his water bottle into the basket on his bed, because he put too many cars in there: “Are you kidding me? Are you kidding me right now?!”
Despite his fierce independence, C is a mama’s boy at heart. He loves to give hugs and kisses. I enjoy when he climbs up for cuddles when I’m lying down. These tender moments are ones I’ll treasure forever.
Baby Jo might eat us out of house and home, you guys.
She wants to eat as soon as she wakes up in the morning. She wants a snack a couple of hours later. She’s hungry again at lunchtime. Then she wants another snack after her nap. Even after all of that food, she still is hungry for dinner every night.
I don’t think I could have captured it any better. This single photo perfectly defines C and Baby Jo’s sibling relationship. So much love. So much fear.
My dear son,
How are you three years old already? You and I used to hang out together all day – just the two of us. Trips to the store, long walks, reading books, playing. I cherish our time alone together like it was yesterday. I’m amazed at how big you’ve gotten. Your strength, courage and resilience inspires me daily. You have been through more this year than any child should have to experience, and I feel like our bond has grown even stronger.
Disclosure: I participated in a Blogger Activation on behalf of Mom Central Consulting for Stonyfield. I received coupons to facilitate my shopping trip and a promotional item to thank me for participating.
I’ve always been very conscious about the quality of food that I’m giving my children, but I have to admit that I’m much more dedicated to quality after C received his feeding tube last summer. For C, he doesn’t eat much orally, so I want what he does eat to be packed with nutrients and free of all impurities: artificial flavors, high fructose corn syrup, and preservatives. We buy organic snacks, dairy and as much organic produce as our budget allows. We go through a lot of Stonyfield yogurt each week! I use it as the base of many of C’s g-tube blends. The kids enjoy eating it and so do I.
I can’t believe these were the best pictures I could get of these two today! We woke amongst an apartment filled with boxes, after moving yesterday. We missed church because we couldn’t find everything we needed in time. Later we enjoyed a wonderful home-cooked Easter dinner with friends from church. The kids are sleeping peacefully and I will be, too. I am exhausted!
Things are never dull at the Novotny household. Sometimes I wish things were a little less interesting, actually. Last Saturday, C was up vomiting every 20 minutes throughout the night. The entire week last week was a saga (aka very long story that I don’t care to dive into!) of trying to get him hydrated just for him to start vomiting again so we could start at square one. On Friday night we ended up at the ER. That visit was a gigantic waste of time and we ended up back on Saturday night, when he got an IV. Here’s my brave little trooper and our silly baby who is very happy to be in Daddy’s arms.
Three weeks have passed since C had his sleep study done at Children’s Hospital of Wisconsin. It doesn’t feel like it could have been that long ago, yet this time has been filled with shock, stress and uncertainty. I haven’t told you about C’s sleep study results because I’ve been having a difficult time processing it.
Spring has finally sprung in Wisconsin! Just last week, I had to scrape ice off the windshield before going somewhere. It’s been a loooong winter. Hubster took the kids to the park over the weekend and they had the greatest time together! I wasn’t complaining about the nap I took while they were gone.
I’m starting a regular feature here with this title. C cracks me up on a daily basis and I’ve simply been doing you a disservice by not sharing his antics.
This week, I’m going to feature some “C”-isms related to his independent streak. Sometimes he makes me want to pull my hair out, but he sure is funny.
Sensory kids are tough. They generally do what they want, when they want and ain’t nobody going to convince them otherwise! For months, I had anxiety about potty training C. Would he be ready? Would he play games with us, like the first time we attempted? Would he have major meltdowns?
This sleep study was originally scheduled for January, was denied by our insurance company, we took it through the grievance process, won, and rescheduled a couple times because C kept getting sick. It finally happened earlier this week! I was pretty anxious about it. With C’s sensory processing disorder, he hates having anything on his face or head. Well…they had to stick a ton of monitors and electrodes all over his face, head and body.
C has a high threshold for certain sensory input, like vestibular and proprioceptive. He likes to fall on his bed either onto his face or backward onto his butt. Here he is falling backward to get the input he needs.
If this is any indication of his driving habits in 14 years…
Here’s C doing donuts in the living room in his Little Tikes Cozy Truck!
We’ve had the pleasure of having Hubster hang out with us for the past few days while he took some time off of work. Yesterday, we went to the Railroad Museum and the kids played with their favorite part – the train table! It was fun to watch Baby Jo get in on the fun now that she’s a little bigger.
I belong to a few Facebook groups for parents of tubies, kids with severe feeding challenges and blended diets. One mother posted a picture of her son’s new Blendtec blender with hope that a new blended diet will benefit her son. I commented that the blended diet is changing my son’s life. Then I sat back for a moment and let those words really sink in.
Disclosure: This post includes an Amazon affiliate link.
C has a high need for vestibular input with his sensory processing disorder. One of his favorite ways to get that is from swinging in this awesome swing we bought from IKEA. Here’s a video of C “stimming” in the swing!
“Shake, Mommy? I drink shake!”
We’ve switched C’s diet from 3.5 cans of Pediasure each day through his gtube to a blended diet of mostly organic whole foods. He still asks me if he can drink a “shake” sometimes. I cringe every time, because now it’s even more apparent what that influx of sugar does to him. Within an hour, his behavior is completely out of control. He runs wild, unsure what to do with himself. It results in outbursts, hurting his sister and me, and throwing tantrums. The crazy thing – he used to be like that ALL THE TIME. It was all that Pediasure and sugar coursing through him. Eek.
Sometimes it feels like parenting is just one giant exam after another. I don’t know if there’s really a correct answer to some of the exams, but I’m sure there are ways to fail. My latest exam had me feeling completely unprepared. Frantic, even. Here’s a breakdown of my most recent exam – tell me how you’d handle it!
I think C has been watching too much “Finding Nemo” lately, because he’s started greeting his sister with, “Hi, Little Fishy!” You’ll also hear him saying, “Hi, little guy!” Some family members say this to him.
What’s the big deal, you say? It’s just a restaurant, you say?
This is the first time we have ever taken the kids to a restaurant! Of course, we’ve dined at fast casual establishments like your Chipotle or your Noodles & Company. But a real restaurant? Nope. First time.
It’s been about a month now since C switched from Pediasure to a blenderized, whole foods diet. I’ve seen tremendous changes in him. Cognitively, behaviorally and physically, he is truly thriving.
I could not be happier with these improvements. I finally feel like I’m giving my boy the best nutritional advantage that I can; and honestly, it’s the first time in his life that I’m feeling that way. Before the tube, it was exasperation and stress that he was not eating. After the tube, I was uncomfortable with the amount of sugar calories he was receiving but worried about his progress on the growth charts. Now I am relaxed, pleased with the quality food that he is getting, and able to focus on his therapy and progress.
Every night as he puts away toys, C has started having phone conversations on Baby Jo’s play phone. They’re pretty funny and random.
“That’s okay. Yeah, that’s okay. It’s good. Yeah, I pick up toys now. That’s okay.”
It’s been about two weeks now since we started C on a blenderized diet of whole foods through his g-tube. He had previously been on 3.5 cans of Pediasure each day, which meant he was getting 63 grams of sugar poured directly into his body daily. That didn’t sit well with me for multiple reasons and now that he wasn’t in a dangerous place with his body weight, we made the decision to take control of his diet.
This kid cracks me up sometimes. He’s been into playing Flappy Bird lately, but he gets really frustrated every time. He’ll groan in disgust or say, “COME ON!” We decided to capture one of these moments today. Hope you enjoy our little display of silly faces, too.
One year ago, I never would have considered the possibility that C would have a feeding tube. I was mortified when it was mentioned as a possibility in July 2013. The thought that my child had such severe feeding challenges that he would require a tube to be surgically placed in order to sustain him…it was overwhelming.
My parents recently moved just ten minutes away from us (from two hours away!) and the kids and I are so happy they did. One of the things that I’ve learned in the past six months is that it really does take a village to raise a child with special needs. C had a great time sledding with his papa during a recent snowfall!
The last few months have been filled with SO MANY DECISIONS. Yes, sometimes I felt like life was screaming at me to make all of them. I was stressed about doing the right thing, making the right choices, putting C on the right path. I was feeling a lot of pressure on my shoulders.
We spent a couple days with Nana and Papa while Hubster was at a conference last week. C got to do some fun things with Nana and Papa, like sledding and baking!
He was very excited to help pour and mix the ingredients.
But what he loved the most? Sampling the dough!
These two have the best time together! Tonight they were chasing each other around underneath the table and just laughing together. LOVE them.
Take C to the feeding clinic, they said. It’s the best place for him, they said.
If he doesn’t sit at the table, don’t give him food at all, the feeding clinic said. He must not leave the table until he touches the food to his lips, they said.
It brings me joy to see how much these two enjoy each other’s company. Their eyes light up when they see each other. I feel like there’s no greater gift we could have given them than each other.
The kids have been sick all week. Baby Jo had her cold for so long that C and I came down with it again. When they’re sick, they are super whiny, clingy and jealous of each other. If I’m holding one, the other is crying. They pull at me all day long. C’s SPD is out of control when he’s sick. It makes for very long, very loud, very stressful days.
When a child gets close to aging out of the Birth to Three program, there are three options. Schedule an evaluation for services with the public school system, seek private therapy, or do nothing. Obviously that last option was not really an option for us. We need help! I originally was not going to bother with the meetings and evaluations with the school system, because we don’t think it’s very likely that C will be eligible. Considering the headaches we’ve been having with our insurance company, though, I’ve changed my mind.
When C had his g-tube placed in August, survival and necessity were at the forefront of my mind. It has certainly been a blessing. He is now safely on the charts for BMI, head circumference, height and weight. He’s wearing clothes two sizes bigger, his hair is thicker and I need to trim his nails often. I have no doubt that he needed the g-tube; but like anything, there are drawbacks to having a feeding tube.
These two crack me up. Here are C and Baby Jo making each other laugh, like they often do. Hope this makes you smile!
I'm Kristin, a 20-something mom to two children. C is a tube-fed 3-year-old boy with SPD and Baby Jo is our energetic 1-year-old daughter. We live on a Wisconsin campus where Hubster works. Welcome to our madness!