Pray for Gage

02/14/2024

With tears of joy and a humble heart, I thank each one of you for your incredible contribution to Gage's medical fund. You have not only provided financial assistance but also brought comfort and solace to our family during this difficult journey.❤️🫶🏼

02/12/2024

I have updated Gage’s GoFundMe please share, thank you to all who have continued to pray and support our son and us through this challenging process.

On February 13th 2023 our lives changed forever when our beautiful 5 month old boy Gage was sent to … Nakita Christensen needs your support for Pray for Gage

02/12/2024

We recently consulted a sleep specialist, and the experience was quite comprehensive. Gage and I are scheduled to stay overnight at their facility in May for his inaugural sleep study. Gage has been facing challenges with daytime naps and nighttime sleep. He has received a preliminary diagnosis of obstructive sleep apnea, and there has been significant consideration given to integrating an oxygen machine and CPAP machine into his sleep regimen. Additionally, we plan to consult with an ENT specialist to explore the potential for adenoid removal.

I've been tirelessly working to update Gage’s GoFundMe page, and we're preparing to reshare it in the next couple of days. Unfortunately, we've encountered a significant challenge as some of the essential equipment and supplies he requires isn't covered by our insurance. This has placed a considerable financial strain on us, especially since we narrowly exceed the threshold for Medicare and disability assistance, leaving us without the support we desperately need. As a result, we're reaching out for help as we navigate this challenging situation.

12/21/2023

12/21/2023

Gage is working hard today before his holiday break!

12/04/2023

Hey everyone,

I wanted to give you all an update after Gage's ophthalmology appointment today. The doctor has decided that he needs to have eye muscle surgery for both eyes. However, before we can move forward with the surgery, he needs to see a cardiologist to determine if he requires a special cardiology anesthetist for the procedure. Luckily we see his new cardiologist in 2 weeks, which has me both super nervous due to the unknown of possible complications and relieved that we are making progress on helping him have a better opportunity to thrive.

As a result, the surgery will be scheduled to take place after April. We appreciate all of your support and well wishes during this time. We'll be sure to keep you updated on any further developments.

Thank you for love and prayers!

11/21/2023

Needing extra prayers this morning🙏🏼 Beebee is taking Gage to the hospital for an emergency X-ray due to his belly being super distended, weird bulging, and the discomfort he was in last night.

11/18/2023

Dear friends and family, it’s with heavy hearts that we share the news that our sweet Gage has been diagnosed with a very rare genetic neurodevelopmental disorder called KAT6A. We are navigating uncharted territory, and your love and support mean the world to us. Please keep our family in your thoughts as we embark on this journey. 💙

07/18/2023

That’s the first time I have ever seen him reach for something, and I caught it on camera🥹
Thank you god, for giving my baby boy strength and for continuing to give him strength throughout his journey.

07/09/2023

Little update
So at his pediatrician appointment last Monday Gage weighed 16lb 10oz. Dr Kotas showed how Gage was now in the 3% for his weight. He said he was going to message Gage’s GI with the update and express concern for his weight so they will be proactive in seeing Gage quicker.
Today we weighed Gage and he’s 16lb 4oz, I becoming more and more concerned for his weight because he hasn’t gained anything since June 1st which was his last GI appointment.
I then noticed in todays photo how tiny his arms were getting and his little rolls were starting to disappear. Maybe I have a little PTSD from the first hospital visit but a little part of me wants to take him to the children’s ER just to force them to see Gage and actually do something about it. We see Dr. Goyal on Thursday🤦🏽‍♀️ which I’m not happy about, only because he didn’t listen to me June 1st when I first voiced my concerns when this all started. I put the paperwork in to change but he has to approve it and well he hasn’t yet apparently.

So along with seeing Dr. Not So Nice we are also getting a second opinion from a GI at Cooks, which I am very much looking forward too. It will also be interesting to hear what he would like to do, and what he has to say.

07/03/2023

We had a little vacay which was much needed. Now it’s back to reality and tomorrow we see his pediatrician and I’m really worried that they are going to have us go back into the hospital since Gage is loosing weight again. We have done everything his medical team has suggested and nothing seems to be working. Prayers that he starts gaining weight and that we won’t have to go into the hospital for another stay.

06/23/2023

Update on our sweet Gage.
Yesterday we had to take him to the emergency room because this whole week his stomach was distended from not being able to make a bowel movement, even with constipation medicine prescribed by his GI doctor, kinesiology tape, and belly massages. So when he went to feeding therapy while they were getting him set up, he started gagging and throwing up. They at that point were too scared to feed him anything, especially if he was this backed up. So they highly recommended us to take him to the emergency room so they could help him.
While there they took an X-ray and confirmed that he was very constipated, so they gave him an suppository. After he made a bowel movement they gave him some Pedialyte and he didn't spit it up then. We also discussed how he hasn't gained weight since the last doctors appt. which was 3 weeks ago. They stated that it doesn't become a concern till it's been a month with no weight gain. So we got discharged.
Well we get home and start his pump to feed him since he missed two feedings and he starts throwing it up.
Today same issue, after every feeding he throws up.
I don't know what to do, every time I call his GI doctor they state that they can see him in two weeks.
I am so beyond exhausted in trying to get these people to hear me.

06/22/2023

Please keep Gage in your prayers, we are having to take him to Children’s ER.

Thank you!!

06/06/2023

Physical Therapy
We are making progress on some of the 4-5 month milestones❤️
So incredibly proud of Gage even with set backs and struggles he makes progress in other areas to show how strong he is!

06/02/2023

Gage had to have a quick unexpected surgery today cause his GTube site got infected. He is now out of surgery and doing good. We will be headed home in a short bit.
Poor dude has had a rough morning though.

06/02/2023

Please keep Gage in your prayers today. I will update y’all at a better time.

06/02/2023

So today was exhausting, but we moms no matter how exhausted have to keep going cause how else will everything get done, am I right.

Gage had his ophthalmologist appointment today at Children’s of Dallas where they dilated his eyes and checked everything going on. Dr Thayer then explained Gage’s results and explained that we will need to see her in 6 months and if there isn’t any progress or not as much progress then we will be discussing scheduling Gage for Eye Nerve Surgery. That will help with his delay in tracking, and lazy eyes.
We then left there and got myself food and dropped off Gage at my mother in laws so I could shoot over to Party City to get stuff for Axles birthday party.
Got back to my mother in laws to pick up Gage and head over to Children’s of Plano for his GI appointment. Which that did not go very well and I left there feeling like that Dr was not listening and was just focused on getting his last appointment done with so he could home. He did mention that Gage’s GTube site looked bad and he tried to get us an appointment at the wound specialist tomorrow but never got an answer so he told me we weren’t responsible with wounds and that I would have to call them and get in as soon as possible.
They aren’t open on Thursdays 🤦🏽‍♀️
I then picked up Gages medicine that he was out of, drove home to then feed Gage, and clean the house cause we are having my grandparents over and well our house just needed to be cleaned. Then had to deal with an emotional toddler, get dinner figured out, eat, clean again.

Then I got to go to bed.

I could use a free party planner, a cleaner, and a break from the crying🫠😵‍💫

05/31/2023

We thought it would be better for us to update how Gage is doing here, that way we can share details on a more daily basis than by monthly updates on the GoFundMe page. The link to that page is linked in the bio though.

Thank you for the love and support you have shown my family.

05/31/2023

Hi Everyone,

I just wanted to take the time to touch base and update you all on our sweet Gage so far.

Firstly, we want to say Thank you to you all for the continued love and support! Your donations so far have allowed me to take care of some massive bills that have finally been sent our way. A huge stress that has been eating at me because we still don’t have answers, which means more expensive tests.
The road is still very long and unknown, there will be many more ups and downs along the way but I am trying to stay positive, Gage is a determined little dude!

With Gage being a complex case and undiagnosed medically, he still thrives despite the odds!!! From seizures, to G-tube surgery, a cerebral palsy diagnosis… he tackles it all with a smile shining on his sweet face.

Since our last update we have had 15 therapy sessions, a visit with the wound specialist and the results from his first genetic testing. At this point it almost feels like groundhog day with his doctors’ visits, as Gage seems to get a new diagnosis every time. Yet they still say that is not the overall diagnosis, and we still don’t know why and what is causing his medical issues. His genetics results came back as

-One pathogenic variant identified in AMACR. AMACR is associated with autosomal recessive alpha-methylacyl-CoA racemase deficiency. (Carrier)
-One Likely Pathogenic variant identified in COX20. COX20 is associated with autosomal recessive complex IV deficiency.

So I made the mistake of researching it and joining groups so I could know more before even talking to the doctor about it. I cried so hard with the fact that my son's test results came back with this and all I know is what I am reading about on google. I waited 4 days with these results lingering in my head and no response from the doctor. Finally I hear from the genetic results therapist and she states that he is the carrier and those results are not what is causing his problems now but because he is the carrier of AMACR his children will likely have it.
Like WHAT!!!! I was so frustrated, relieved, and just exhausted because I wanted so badly for them to find the stupid thing that's causing all of this but instead it showed what my grandchildren will possibly have to deal with. Then with that she goes on about doing another test but after that there's nothing left, until more medical studies come out.

So they are going to do another test that reads his full DNA, which is $2400. Which made my stress level go up cause this will leave about $550 left in the fund for any other bills.

I cry almost every other day because test after test and with no results that say “hey it’s me, I am what is causing your son all this discomfort and struggle”. Then I think what can I do and start researching and that doesnt help and just makes me more paranoid with what our future may hold with how his diagnosis affects him.

Tomorrow is another big day of tests and visits. We have our first visit with Dr. Thayer, she is an Ophthalmologist at Dallas Children’s. That appointment is going to be a long one, like 3 hrs long, but she will be looking deep into Gage’s eyes and trying to find out why he has a myelination delay. Then we are off to Plano Children’s to meet with Dr. Goyal, his GI doctor because Gage is still throwing up even with adjusting his feedings to where he gets 4 ounces in a 1 hr duration.

Then hopefully sometime this month or next we will be able to get in and have another EEG and MRI because last week during a video I was taking of him smiling he had what the neurologist thinks but isn’t too sure either a minor stroke or an absence seizure. We won’t know though until we see his results though.

He’s doing good at therapy though, they have said he has made progress and has started to get some of the 4 month milestones!

Once again thank you so much for the continued support and prayers for my family.

Love

Nakita (Mom of our tiny superhero)

05/31/2023

Thank you so much for the love, support, and generosity that you have shown to our baby boy Gage and my family. It truly means the world to us.

Gage is staying strong and showing so much more smiles since his Gtube surgery. In that same week as the surgery Gage finally got to have his first of probably many MRI's which they also did another EEG as well. So unfortunately because he was diagnosed with epilepsy they have to put him under anesthesia with a breathing tube for these tests. He did great though, and of course came out a little grumpy but once he was in my arms he was all good.
This week Gage was doing great. He was smiling and always loving his brother’s attention but he then started to be uncomfortable again and really was just not himself. Luckily we had his Neurology appointment this past Thursday and we had her look at his Gtube because it was inflamed, and just looked absolutely gross. Sure enough she agreed and told us after our appointment with her to see the wound specialist to have them look at it.

Dr. Kahild took a look at his MRI and EEG scans, and informed us that Gage has Cerebral Palsy along with Microcephaly with myelination delay, his olfactory bulbs (nerve cells that are involved in the sense of smell) were absent in the scan, and she informed us that she will be referring us to ophthalmologist because his brain nerves aren’t talking to his eyes which is why he has lazy eyes and has a hard time tracking. She is also upping his seizure medicine and I am to report to her anytime he has a seizure now so she can fine tune his medicine each time. She was super informative and even though we were getting some results from her she also stated that unfortunately even with diagnosis we are still in the why phase. So we still have a lot more tests till we hopefully get to the reason for all of it.
After the visit with her I went straight upstairs to the GI section and they were able to have the on call Peds nurse practitioner to look at Gage’s Gtube. She said his surgical sites were slightly infected, so she cleaned it up so we could make it to Monday when we see the wound specialists at the Dallas Children's Hospital.
We also had his appointment with his genetics doctor 2 weeks ago, he tested Gage for Muscular Dystrophy, which Dr. Kahild showed an agreement that made sense to her why they were testing for that first. We should get those results back hopefully in the next few weeks.
We are slowly starting to get some answers, but I never thought or realized how much extra stress and anxiety that would bring upon me and my family, as we try to figure out our new way of living and try to learn how to help him cope with it throughout his life. Along with giving our other son Axle enough attention and love.
I will try and keep you all updated on here, I do update on Facebook more than on here though.

With all the love

Nakita ( Mother of the Gage our Tiny Superhero)

05/31/2023

On February 13th 2023 our lives changed forever when our beautiful 5 month old boy Gage was sent to Children’s hospital in Plano because he was failing to thrive. He weighed 10lbs 2oz, just 2lbs shy from his birth weight. During that stay more problems occurred and he started having seizures, was incredibly uncomfortable and just became miserable.

Our family spent two weeks in hospital whilst a team of doctors at Children’s Medical Center tried to uncover what had occurred and why he was failing to thrive.

During our stay he had 7 X-rays, 45min EEG, 24hr EEG, Upper GI scan, Lower GI scan, swallow study, a lot of blood work and more tests. They could only diagnose him for the obvious which was failure to thrive, epilepsy, hypertonia, and developmentally delayed.

They placed a NG feeding tube in him, and we were initially told that with his NG tube, medication and management, we’d have to go and try to live our lives back at home as normally as possible, with no cure but we would have to have follow up appointments with doctors and do outpatient tests so they could still try and figure what and why this was happening.

2 months from Gage’s hospital stay, with tons of Physical Therapy, occupational therapy, Feeding Therapy, and vital stimulation therapy Gage had made an unbelievable amount of progress and our family started to gain some normality and hope.

Then in April, Gage had his first strong seizure, affecting his newly acquired fine motor skills, head strength, bottle eating/swallowing skills, and eye strength. All of his determination and progress was undone in one seizure.

A lot has happened since then… fast forward to today and our little boy has had countless tests, procedures and his first surgery, which was transitioning him from NG tube to GTube. Our family is finally back together after this week’s hospitalization.

Our little boy has been through so much, and had to endure more than most would in a lifetime, but everyday, he continues to amaze us with his determination, resilience and positivity. Gage is what keeps us strong, but this has been an incredibly hard time for our family.

Since this all began our lives have changed beyond recognition, with taking on Gage’s care management at home, we could not have been more blessed to have the incredible amount of help that Logan’s mom has provided us with. We’ve spent a huge amount of time in and out of hospital, and day to day we have to plan and think about things we couldn’t even imagine.

Having to watch your child go through so much and knowing his diagnosis of what is causing these seizures, development delay, and hypertonia is uncertain is the most heartbreaking thing a parent can experience. And the day to day practicalities of living in with the medical expenses are hard too.

With mounting expenses from traveling back and forth to appointments, specialists copays, tests that aren’t covered by insurance and hospital bills they have started to impact on our lives.

As a family we are very independent and have tried to tackle this alone for a while, however, the long term impact of this situation is starting to take its toll and we know that this will continue into the future. So, we now realise that we need to ask our friends and family for help.

Since this begun we have been inundated by well wishers and people that want to help, but often haven’t known how, which is why we decided to create this GoFundMe.

If you choose to give, we'll use the money to cover Gage’s medical expenses and for future appointments, tests, and procedures.

Thank you for checking in, and caring for our family. And if you can donate, thank you for caring for us in this way as well. It means more to us than you could know.