Gideon, A Mighty Warrior's Journey

Gideon, A Mighty Warrior's Journey Gideon Montgomery Martin was born with a rare genetic disorder, CACNA1D. This is his story.

Another amazing update about Gideon!🎉 As soon as I opened the app tonight Gideon selected "WANT, BLANKET,  TUCK IN." I s...
12/08/2025

Another amazing update about Gideon!🎉

As soon as I opened the app tonight Gideon selected "WANT, BLANKET, TUCK IN." I said ok let me get you a blanket. For reference he almost always has a blanket especially during the colder months because he struggles to regulate his body temperature. When he doesn't have one on it makes sense that he asks for one, whether to keep warm or if it just for comfort I am still uncertain. One thing is for sure, Gideon loves his blankets!

I scrolled to a different page of words so he could explore more and while looking around I noticed him rubbing his nose. Then I heard the machine speak, "MY NOSE!" I asked, "Gideon does your nose itch?" And immediately he responded, "A LOT!"

Again, I started crying! Troy and the kids are all here and they start laughing and cheering him on, we all heard him this time! Then the machine spoke, "WHAT?" and Gideon turned to look at me as if to ask what is going on? So I explain we are all just so happy for him to be able to communicate with us and we are so proud of him! He squealed and started kicking his feet like he does when he is really excited!

We are so so thankful!🥰

God you're so good, you're so good to me!

"The Lord is good to all, and his mercy is over all that he has made." Psalms 145:9

Gideon, my sweet sweet boy, you truly are a miracle and a beautiful gift from God. A new and exciting opportunity that w...
12/07/2025

Gideon, my sweet sweet boy, you truly are a miracle and a beautiful gift from God. A new and exciting opportunity that we are so thankful to experience. Gideon's speech therapist has put us in touch with a company that provides eye gaze devices to help people communicate. We are currently on a 2 week trial and when I tell you I am AMAZED by this boy, it doesn't even scratch the surface of just how truly remarkable he is!

To give a little rundown of how the device works, there is a setting that calibrates to his eyes as he looks around the screen. Once it syncs up it follows his eyes as he moves around the screen. He has different apps that he can open by focusing and the eye gaze will open the app. There are words he can 'click' on with his gaze and the machine will speak them. There are also games with animals, musical instruments and animated color pages.

Yesterday we set it up while at speech therapy. Gideon wasn't interested at first but we needed him to wake up in order to sync it up to his eyes. I took his blanket off of him and got him out of his chair to dance around to get him ready to play. Once he was feeling active I put him in his chair and we were able to get the eye gaze calibrated we watched as Gideon explored the app and the different words. He seemed to catch on very quickly as his eyes kept 'clicking' on words and we could hear the machine speaking. He kept going back and forth between "want" and "what?" So I asked him, "Gideon, do you want something? What do you want?" We could see his eyes traveling across the screen as he seemed to be examining the words. He finally came across the word "blanket" and when machine spoke it Gideon's demeanor changed and immediately the eye gaze went back and forth speaking, "Want, Blanket, Want Blanket, Want Blanket." I was enjoying watching him explore and then it clicked HE WAS SPEAKING!! He was requesting HIS blanket, the one I took off of him to help wake him up! I picked up his blanket and asked, "Gideon, are you telling me you want your blanket?" Again the machine "Want, Blanket." I said I am sorry buddy here is your blanket back and placed the blanket on his lap and tucked it at his sides. He squealed with delight and started kicking his legs in excitement!

I looked at his speech therapist and said "I am not crazy, right? That wasn't a coincidence right? He just successfully communicated a want for essentially for the first time right!?!" Still in disbelief I broke down bawling! I can't even begin to describe what I was feeling!

His speech therapist had tears running down her face and said, "Gideon, I am so proud of you for finding your voice! Thank you for telling us you wanted your blanket!"

I was a mess, a happy stunned mess, completely in awe for the next several minutes as Gideon continued to "speak" to us through his eyes gaze. The words that followed were, night-light, tuck in, lights off, goodnight, repeatedly!🤣 He was apparently ready to continue napping!

I am extremely thankful for technology that allows Gideon to have a voice! I am so proud of how hard he works to adapt to the world around him! I am looking forward to continuing to trial this device and hopefully be able to get him one to use permanently!

"On the glorious splendor of your majesty, and on your wondrous works, I will meditate.They shall speak of the might of your awesome deeds, and I will declare your greatness,They shall pour forth the fame of your abundant goodness and shall sing aloud of your righteousness." Psalms 145 5-7

11/09/2025

Thank you all for you love, prayers and support! Gideon was discharged yesterday and we are home. He was struggling a lot today with dykinesia, which he hasn't experienced for a while. I am beginning to think it is stress induced. It is almost like he is having anxiety or panic attacks after hospital stays. I will continue to monitor him and keep track of any patterns. Other than that slight issue things are going well and we are so happy to be home!

"I will bless the Lord at all times; his praise shall continually be in my mouth." Psalms 34:1

After what started out looking like a very successful morning, the day quickly turned into a very frustrating and extrem...
11/07/2025

After what started out looking like a very successful morning, the day quickly turned into a very frustrating and extremely long waiting game. I don't like to complain on here for various reasons, mainly because I want this to be a positive and uplifting environment. But there comes a time where I need to be honest and be able to vent/decompress.

I know the medical field is extremely complex and many of the people we are blessed to have part of Gideon's care team are AMAZING, and I truly mean that! There are soooo many doctors and nurses that we truly couldn't get through without. (Shout out to children's 2 for always being the best, not just for Gideon but myself included 💗)

With that said it is extremely frustrating when you plan ahead, speak to multiple people to ensure all of Gideon's plan of care is ready and available prior to coming to a different location only to be met with opposition from doctors who have never seen Gideon but claim to know what will work best for him! Gideon has MANY specialized care plans that are specifically geared towards helping to regulate his very complex bodily needs. He is NOT a 'by the book kid.' I get so tired of constantly arguing for his basics needs when they are literally in black and white in the system, complete with details as to why these are needed.

As tiring as it is, as his mother this is my greatest calling! I am his advocate, his voice and his protector and I will ALWAYS make sure he receives what he needs, I will never stop fighting for him!

Here's to night 2, but looking forward to tomorrow with great anticipation.

Thank you for your prayers, support and for the grace to be real and vulnerable about the reality of advocating for medically complex children. If you know someone walking this journey, tell them they are doing a good job and you are proud of them, because I can assure you they are their own biggest critic.

"Great is the Lord, and greatly to be praised, and his greatness is unsearchable." Psalms 145:3

Please say a prayer for our Mighty Warrior Gideon! We are admitted at CHOP. He is scheduled for a sedated CT tomorrow to...
11/06/2025

Please say a prayer for our Mighty Warrior Gideon! We are admitted at CHOP. He is scheduled for a sedated CT tomorrow to monitor him for kidney stones. He will be receiving IV fluids tonight while fasting so please pray that his electrolytes and blood sugar stays regulated so we can be discharged tomorrow afternoon.

I am struggling a little since the last time he was admitted at CHOP for a 1 day procedure he ran into a lot of complications that kept us admitted for 7 weeks! I am trying to give it to God and trust that He has got this but I would be lying if I said I am not stressing a little over it.

"When I am afraid, I put my trust in you."
Psalms 56:3

09/09/2025

It has been a long, busy summer yet it somehow it felt so short! All the kids are back in school and Mommy and Gideon are keeping busy during the day. Gideon is doing amazing rolling over and is tolerating belly time more as long as we elevate him so he isn't putting pressure on his g-tube. He is really starting to use his arms to push himself up! He is getting so strong! Gideon you amaze me more each day! We love you so much and will continue to celebrate every inch of progress!

You show me a mountain and I will show you how my God moves!

" I can do all things through him who strengthens me." Philippians 4:13

06/26/2025

Gideon is feeling better. We are still in the PICU since he continues to have drops in his blood sugar even though he has been tolerating his feeds. Please be praying we can get him stable so he can get off IV fluids and be able to come home.

"I will bless the Lord at all times; his praise shall continually be in my mouth. My soul makes its boast in the Lord; let the humble hear and be glad. Oh, magnify the Lord with me, and let us exalt his name together!" Psalms 34:1-3

Enjoy us having some fun with play doh!

It has been a long and exhausting 3 days but God is so good! Gideon is admitted to the PICU, he tested positive for rhin...
06/24/2025

It has been a long and exhausting 3 days but God is so good! Gideon is admitted to the PICU, he tested positive for rhinovirus and Human Metapneumovirus which is similar to RSV. Last night he had some issues with low blood sugars and we are working hard to find a balance with his fluids and feeds. He is finally off oxygen and doing very well on room air. He is becoming slightly fluid overloaded so he has be given some lasiks to help him get the excess fluid off. At this point there is no projected discharge date. Please be praying for strength and healing for Gideon as his body is fighting hard to kick this illness and balance all of his electrolytes.

"I have chosen you and not cast you off
fear not, for I am with you;" Isaiah 41:9-10

06/23/2025

Prayer Warriors Needed!💙🙏

We love celebrating our childrens accomplishments! With Gideon we find ourselves celebrating each inch-stone but GOD has...
06/19/2025

We love celebrating our childrens accomplishments! With Gideon we find ourselves celebrating each inch-stone but GOD has done great things!! Yesterday we celebrated a HUGE MILESTONE for Gideon! Gideon is officially 1 YEAR SEIZURE FREE!!!

I double checked with the neurologist last week after his episodes of dyskinesia and he confirmed the EEG showed no seizure activity and dyskinesia is different than seizures so he said absolutely continue the countdown!!

It has definitely been a wild year going from him having seizures every 4-6 weeks and being hospitalized to now going a full year without a single seizure! This feeling is indescribable and we are so thankful! We look forward to watching Gideon continue to grow and learn new things!

"The Lord has done great things for us; we are glad." Psalms 126:3

06/11/2025

Praise God from whom all blessings flow!
Thank you all so much for continued prayers for Gideon and our family! Gideon had an EEG last night and the results showed no abnormal brain activity. Praise God! The neurologist said at this point he doesn't believe what Gideon was experiencing these last two days were seizures. I was able to capture a video last night of his activity and when I showed it to neurologist and he said that confirms the theory that they're not seizures but in fact something called dyskinesia. It is not harmful harmful like seizures so no action needs to be taken other than to monitor him should it happen again. Gideon was discharged and we are now home! Thank you all again for the prayers, love and support!💗

06/11/2025

Prayer Warriors Needed!🙏💙

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Millmont, PA

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