We were told special needs kids can't have special diets. We were told not to push our food beliefs onto him.
But we asked for a second opinion. We stood firm in our belief that
Max can eat blended food, so he started on the @real
And Max is growing, able to hold down more of his food and we are happy seeing our vegan athlete have meals of grape juice, water, kale, hemp, olive oil, quinoa and cinnamon.
Thank you real food blends for making a blend that allows us to give our gtube child the same food choices we want for all our kids. 💚💘 #realfood #gtubelife #willfindsaway #cpwarrior
Next week Conner and I will be traveling to see this awesome lady again! It’s been a year since Conner has seen Dr. Roman. As you may know, Conner was diagnosed with Cortical Visual Impairment (CVI) when he was about 13 months old/9 months adjusted.
CVI is a form of visual impairment caused by a brain problem rather than an eye problem. Conner’s CVI is most likely caused by his PVL, but I often wonder if infantile spasms were the real cause for Conner. His vision went downhill when he was diagnosed with infantile spasms, a rare form of epilepsy.
In general, I’m rarely thrilled to seek out specialists as it often brings new diagnoses, bad news or more things to pack into our already full days. However, Dr. Roman was the first specialist’s office we left with smiles on our faces feeling encouraged for Conner’s future. Conner’s vision has improved so much over the last year that I’m extra anxious to make our way into her office this time! ❤️💪🏼
We have one spot left for our October 1-5 MEDEK intensive with Jo-Anne from @smiletherapyforkids
! It will be in Tulsa, OK. Contact me for details!
is so lucky to have a universal exercise unit (spider cage) now! Conner got to try it out this morning. This thing is so cool and unlike anything he’s tried in the therapy world. I am excited to add this into the rotation for Conner’s therapy! 💪🏼❤️
Conner has always been the best yawner. His yawns are dramatic and wide. Yawning hasn’t always just been a cute thing he does when he is tired. Yawning is actually a sign of stress or discomfort in neonates. It hurt my heart to see Conner yawn or get the hiccups (also a sign of distress) while he was in the NICU. We are now past that stage where yawning 100% means he’s a sleepy monkey! It should be noted that I yawned no less than 14 times while posting this. Did you yawn? 😴
Brant and Mr. Dan always have a ball together!
there was always a running joke in the NICU that preemies look like little old men. Conner was no exception 😂
in the NICU I was taught that putting Conner’s hands up by his face was comforting to him. He often did it himself as well. Providing boundaries for him such as a swaddle or gentle pressure around Conner’s head and feet were some of the other things we did. Conner was a pro at breaking out of swaddles. He would quickly find a way to stick one foot out - ornery little fella!
For 10 years we have learned to create new normals. Mitochondrial Disease entered our lives and turned them upside down. We have all handled it differently. Some of us choose to not think about it, some of us have read everything they could about it and some of us pretend like it doesn’t exist. We all have coped differently. Thursday night, after an ER visit, I was reminded of how I don’t always have things go the way I planned. And that it’s ok to zig when I wanted to zag. To not always have things go according to my plans. If I had not gone to the ER with LTD, I would not have run into one of his old nurses from the GI floor that is now working trauma at the children’s hospital here. Lemonade from lemons, my friends. LTD asked me that night how many hospitalizations he has had. I lost count at some point but it is over 30 during his 10 years walking this earth. Leaving each one thankful for that sweet boy that calls me momma. Sure, there have been growing pains. Especially in the last couple of years as LTD has gotten older, more aware of his condition, that he is different than the other kids at school. That is the hard part. But even in the uncertainty of it all, having a child with a chronic illness, I know God is bigger. I choose to trust Him and praise Him. And there is always hope! Please help us raise awareness. #iknowmito #mitochondrialdisease #thinkmito #chronicillness #godisbigger #godisgoodallthetime #tpndependent #gtubelife #evenif
Conner wouldn’t be here today without some pretty amazing NICU nurses. They took care of Conner at his sickest and celebrated with us on good days. Happy NICU nurses day to some of my favorite people! ❤️
As mentioned in my stories today, Conner is missing his Corpus Callosum. This connects the left and right hemispheres of the brain and enables communication between the two. We aren’t sure if Conner was born without it or if it atrophied during one of the times he was struggling to survive. We learned about it when Conner had an MRI before he was discharged from the NICU. There’s nothing that can be done about it, so I don’t focus on it very much and often forget it is part of his medical history.
Some people that don’t have a Corpus Callosum can’t cross midline. There’s an imaginary line and they just can’t cross it. Some people that don’t have it, don’t even know it’s missing. For now, we aren’t worried, however, it can cause learning challenges in school. One of those, wait and see kind of things (not my favorite). ❤️💪🏼
Two weeks ago, when we went to Deckers GI doctor, he cut his mid day feeding as well as put him on a medication to stimulate his appetite. He told us ‘I want you to keep your expectations low. He won’t be eating in a month’. I was in such a hard place mentally with his feeding, I believed him. .
I am happy to tell you that as of this very moment, we haven’t used Deckers feeding pump for an entire week! He had his last gtube feeding last Saturday morning, and all of a sudden he just ate. I know, strange! But I can tell you that I am feeling beyond blessed by this! TAKE THAT DOC! .
Does this mean our road of overcoming feeding issues is over? No! But, this is a massive step in the right direction! .
#gtube #gtubelife #tubie #tubielife #throughhimallthingsarepossible #overcoming #mykid #kickingbuttandtakingnames #thankyoujesus #godisgood #godisgoodallthetime #nicugrad #nicugraduate
Wobble box exercise! The wobble box adds a whole new level of difficulty to an exercise I have been doing with Conner. He’s got a long way to go, but he’s already come so far ❤️💪🏼
Conner tried out his new @kindandjoy
AFO socks today! I have to say that I’m impressed! They fit well, are soft and stayed up the entire day. They worked great with and without his AFOs! The tie dye is a bonus! ❤️
I’m (obviously) obsessed with this tape-free face! #gtubelife
We snuck in a little MEDEK during Conner PT session! Always nice to get to do the exercises that require a spotter!
Mom's voice can always stop the crying 👍🏽💯😎♥️
If you’re confused between #JoeyPump
I have used both and will help you decide: Joey is big, heavy, and won’t pump real food through. It works good though with thin liquids/formula. It also has an auto-prime option. Infinity, on the other hand, is small/thin, light, has many options that make your life easy, and with a small trick with bags you won’t heat the beep while pumping thick formula/blenderized food. It’s also washable. One of its best features is that you could program an interval between feeds, set the speed and the amount to feed, the total amount per day, and more. I’m so happy with our Infinity pump! #feedingtube #tubefed #tubefedbaby #gtube #gtubebaby #gtubelife #notsponsored
A pretty awesome package arrived in the mail today. @_watch_me_win
sent Conner his @converse
high tops that he has out grown. Conner is so lucky to have these shoes because I’m certain there’s a bit of super power in them! As soon as I put a pair on him he wanted to stand and initiate steps. He so badly wants to move on his own. These high tops will take Conner’s MEDEK Therapy and shoe game to the next level! Thank you! 👟 💪🏼❤️
Conner and I had a busy day of exploring Tulsa with family! We checked out @gathertulsa
for some @tulsa_roots_music
and wrapped it up with a movie night with Conner’s cousins.
I’m working on giving Conner (and myself) a better balance between therapy appointments, therapy I do with him at home and fun, “normal” kid activities.
Focusing 100% on therapy every second of everyday has been weighing on me lately. It’s overwhelming, often times it feels impossible (especially with feeding) and can be isolating and lonely.
Getting out and about and having some fun without any pressure to get stronger, spend time in medical equipment, get his full volume of food in (without puking), take bites (just one bite is all I ask), get in the proper position for fine motor skills, put on AFOs, put on hand brace, put glasses on (which I’m terrible at) and the million other activities that are on my list to accomplish with Conner each day. It is necessary 99% of the time, but so is the 1% of having a break. ❤️💪🏼
🎉This kid needs a new car seat!!! What!?! Big Buddha is at his limit in his baby seat.! 🤦🏼♀️🤷🏼♀️ What do y’all have? Any deals?? Want to be safe but not spend a zillion either! 🤗
Oh and this kid 👇🏻 is just living it up! Saw PT this week and we are working hard on those back and neck muscles! We will get there. Slowly but he continues to just soar and do more and more everyday! Huck Alan you are a joy! Get it bud! 💕
did you know Conner use to have an ostomy? He’s actually had ✌🏼 of them. Conner developed NEC at 6.5 weeks old. He was transferred to a second NICU and was not presenting any of the typical signs of NEC. His surgeon decided emergency exploratory surgery was necessary to save his life. The surgeon got in just in time because as he found the affected part of the bowel, it disintegrated in his fingers. Conner’s bowel was on the brink of perforation. We are thankful he made such a hard decision on a 2lb baby struggling to survive. 💪🏼❤️
36 hours of labor, Hurricane Irma, CHD with a swiss cheese septum heart, failure to thrive, g-tube placement, congestive heart failure, open heart surgery, unconfirmed meningitis, oral aversion, more time in the hospital than anyone would want to spend, and from barely surviving.... but this girl has made it to a YEAR and is now thriving! Calla has embodied bravery and determination every step of the way. We couldn't be more proud of our little golden snitch, warrior princess. HAPPY 1ST BIRTHDAY, CALLA!
#misscallajane #CallasCrimsonArmy #12monthsold #1yearold #heartbaby #hearttoddler #heartwarrior #chd #asd #vsd #chdwarrior #chdawareness #chdprincess #7monthspostop #openheartsurgery #ohs #gtubebaby #gtubelife #gtubeawareness #gtube #newlife #zipperscarclub #smallbutmighty #andthoughshebebutlittlesheisfierce #nothingstandsinherway #shewillmovemountainsandclimbthem #wherehasthetimegone #notababyanymore
Welcome to FlavorTown, Conner. Population: 1
Part of our homework from Conner’s Feeding intensive was to try BOLD flavors. Surely this is a good start.
My 7 year old Sakiya and my 9 year old Lonnie showing their gtubes aka MC-KY Buttons or (Mickey Buttons) as they call it! #gtube #gtubelife #MC
this is the first time Conner was extubated. He was intubated and on a jet pump for weeks. We stood there watching and waiting to see how his tiny 2lb body would respond to his new oxygen support. Of all the challenges Conner has, I was convinced pulmonary struggles would be one of them.
Conner came home from the NICU off oxygen. However, he was on two different breathing treatments upwards of 8 times a day. He’s finally to the point that he only requires one inhaler twice a day. ❤️💪🏼
Adding in some communication work more throughout the day. Conner is pretty much non-verbal besides a few words. He loves shaking his head “no,” but refuses to nod “yes.” Instead, he pats whatever is around him for “yes.” He has been getting frustrated lately when he’s not able to communicate what he wants (or doesn’t want), so adding communication to our high priority list.
In other news, he still loves MEDEK and gets a little stronger each day.
Back into the swing of things with our MEDEK Exercises...here’s a new one we picked up during Conner’s 3 week @napacenter
This was my first trip to the NICU as a parent. I use to work in the same hospital my boys were born in. As part of my fundraising job, I use to give tours of that very NICU and rattle off facts about how babies the size of beanie babies were surviving behind those NICU walls. I could list off the number of rooms, specialists, how many kids were treated each year, talk about the playground, library, etc. What I could never do was fully appreciate what parents of critically ill babies and kids were truly going through. Frankly, I couldn’t ever imagine it and never thought it would happen to me. Boy was I wrong. I lost a son in that very NICU and watched my other son struggle for 6 weeks until he was transferred to another NICU in town. Everyday I find myself thinking about the “what ifs” but I can now appreciate the struggles of many before me and am thankful for Conner and how his challenges have changed me, for the better. ❤️💪🏼
Today is a big day for Conner. TWO years ago, Conner came home from the NICU. We’ve had our fair share of really good days and most definitely some challenging ones. Conner’s fighting spirit and smile continue to remain regardless of what he faces. I’m beyond lucky to call this handsome fella my son. Happy homecoming day, Con! ❤️💪🏼
I’d compare today to the mid point of a marathon....
You’ve committed, prepared for, and started the race. They say starting is the hardest part!
B’s pain is being managed, he’s doing amazing with treatments despite the fact that his abdomen is tender and it hurts to cough. He’s finally getting things “moving” after 3 days of pain meds and not much solid food. And, he’s handling the feeds so so well!!
I’m managing this steep learning curve quite well too! Today, I changed his dressing all by myself (with the nurse watching/supporting). I’ve been starting and transitioning his feeds alone too. I’ve learned how to used the med port in the tube (B especially loved getting his restoralax through the tube!).
All of this combined with daily visitors cheering us on (thank you Hilary and Allison) and LOTS of FaceTime, we really are winning!
I’m tired, missing my home, and hopeful that I have enough steam to manage the rest of this race. But Brayden is amazing and he is my “why”-looking at him, it’s almost impossible to doubt that we’ve got this!
#mommymarathon #gtubelife #learning #journey #tiredmama #starbucks #moisturizer #robaxacet #cfrockstar #myboy #soproud
September in NICU awareness month. Thought the month I’ll be sharing more of Conner’s NICU journey and how it has shaped our lives. ❤️💪🏼