Incredible Izaac

Incredible Izaac I am Izaac, I am 2 years old with a rare genetic disorder called GM1 (gangliosidosis type 1).

October 4th 2024; Day 11 In The Hospital. First Off Mommy And Izaac Want To Say Thank You To Everyone That Has Been Pray...
10/04/2024

October 4th 2024; Day 11 In The Hospital. First Off Mommy And Izaac Want To Say Thank You To Everyone That Has Been Praying And Keeping Him In Going. Also, Thank You Jesus For Keeping Him Strong And Thriving To Get Better. Izaac Got A Good Report From The Doctors This Morning And We Couldn’t Be Anymore Happier. The Doctors Told Us This Morning That They Think He Is Ready To Go To The Normal Floor In Hopes To Get Discharged Home. The Doctors Think For Now Since He Is Sick High Flow Will Be A Nightly Routine At Home. They Also Said Once Izaac Is Feeling Better He Might Not Need As Much But It’s All Just A Waiting Game. Mommy Is A Little Nervous Going To The Normal Floor Bc She Knows Care Will Be A Lot Different From The ICU. But We Are Praying Things Will Be Good And We Can Go Home Soon. We Have Been Having A Good Day; Izaac Is Definitely A Fighter! He Has Proven That He Can Get Through Anything That Comes In His Way. He Is Doing Great Oxygen Wise, Staying Between 97-100 On A Half A Liter All Day 💕

October 3rd 2024, Day 10 In The Hospital. Izaac Did Okay On The High Flow Oxygen Last Night; Not As Great As We Wanted. ...
10/03/2024

October 3rd 2024, Day 10 In The Hospital. Izaac Did Okay On The High Flow Oxygen Last Night; Not As Great As We Wanted. The Doctors Wanted To Get A Chest Xray This Morning To See If He Developed A New Virus. Izaacs Xray Showed A Slight Collapse In The Bottom Part Of His Lung But No Signs Of A New Virus. We Are Now Going Back Up On Our Breathing Treatments 4 Times A Day To See If It Will Help. If The Breathing Treatments Don’t Help We Will Be Going Back On The Bipap At Night For The Extra Support. Besides The Little Bit Of Bad News We Are Still Thriving And Doing Good On A Half A Liter Of Oxygen During The Day. The Doctors Are Wanting To See How The Breathing Treatments Are Doing Over The Next 24 Hours To See About Whether We Need To Switch Back To The Bipap. They Are Also Going To Do A Repeat Chest Xray As Well. Izaac Started A New Secretion Med On Top Of The One He Already Takes But The Doctors Said It Would Take A Few Doses To See If It Actually Works For Him Or Not.

10/03/2024

Izaac Decided He Wanted To Stay Up Late Tonight So He Could Watch Some Bluey!

October 2nd 2024, Day 9 In The Hospital. Not Much Of An Update Today. Last Night Izaac Was Having A Lot More Secretions ...
10/02/2024

October 2nd 2024, Day 9 In The Hospital. Not Much Of An Update Today. Last Night Izaac Was Having A Lot More Secretions And Agitation On The Bipap. We Are Going To Trial High Flow Oxygen Tonight And See If It Will Be A Better Fit For Him To Possibly Go Home On. The Doctors Are Now Wanting To Try A Different Medicine For His Secretions Instead Of The Injections For Now And See How Izaac Handles It. The Doctors Said Izaac May Or May Not Need The Injections Down The Line Depending On If The New Medication They Want To Try Will Work. Besides Trying To Find A Night Time Regiment For Oxygen And Seeing If The Secretion Meds Will Work We Are Just Waiting To Go Home. Izaac Has Been Struggling A Little Bit With Secretions Today But We Have Been Able To Manage Them And Keep His Oxygen Up. We Are Still On A Half Of Liter So Far Which Is Lower Than What He Is On At Night At Home. Besides All That Mommy And Izaac Are Just Waiting For The Day They Let Us Go Home.

I Forgot To Mention: Izaac Got Fitted Today For A New Vest To Help With His Posture And He Will Be Getting His New Leg Braces Come Friday! 💕

October 1st 2024 One Week And A Day In The Hospital; Things Are Getting Better Day By Day! Today We Had A Spa Day And We...
10/01/2024

October 1st 2024 One Week And A Day In The Hospital; Things Are Getting Better Day By Day! Today We Had A Spa Day And We Were Able To Get Up And Sit In Our Stroller. We Have Went From Being On 3 Liters Of Oxygen To ONLY a Half A Liter (Which Is Almost Room Air) In a Matter Of A Day! We Are Still Waiting To Get The Botox Injections For His Secretions But They Were Talking About Coming To The Room And Doing Them Instead Of Taking His Down To The OR. Besides The Injections And Doing Good Oxygen Wise Nothing Else Has Changed. We Are Still Doing Good Cardio And Neuro Wise So That Is A Plus 💕 Still Hoping And Praying We Stay On The Right Track And Get To Go Home Soon.

September 30th 2024; One Week In The Hospital. We Got Off The Vent Saturday Morning. We Have Been Trailing Bipap At Nig...
09/30/2024

September 30th 2024; One Week In The Hospital. We Got Off The Vent Saturday Morning. We Have Been Trailing Bipap At Night And Oxygen During The Day. Izaac Is Currently Struggling With Everything To Do With The Bipap. We Were Having Issues With The Bipap Last Night While Trying To Get His Feeds Started Up Again. He Ended Up Throwing Up Due To Air Being Trapped In His Stomach But We Were Able To Get Some Of The Air Out. The Doctors Are Now Talking About Possibly Taking His Central Line Out And Going To A Normal IV. Izaac Is Currently Doing Good On Normal Oxygen And Hopefully Turning In The Right Direction. We Are Talking With ENT Into Getting Botox Injections On Thursday For The Amount Of Secretions He Is Having And Hoping The Injections Will Help Clear Some Of Them Up. So Far Izaacs Temps And Blood Pressures Are Doing Good. We Are Praying And Staying Strong And Hoping We Will Get To Go Home Soon.

Izaac had been fighting a sickness that we had been able to manage at home. On September 23 2024, after doing our daily ...
09/29/2024

Izaac had been fighting a sickness that we had been able to manage at home. On September 23 2024, after doing our daily routine and our daily breathing treatments Izaac had stopped breathing and started to turn blue. My heart sunk thinking this was the moment we had been dreading. I immediately thought of putting oxygen on and doing a sternum rub but nothing. I then called 911; while trying to figure out what went wrong. I immediately started doing CPR while trying to remain calm, but inside I was broken. EMS then arrived and began to take over all I could do was break down and cry thinking this was it. Then, EMS thankfully told me he had a pulse and rushed him to the hospital. Izaac got put on the ventilator and was doing okay, but all I could think about was what the damage was in the process of everything. Izaac then got X-rays, CT and a EEG; thankfully everything came back as normal (Izaac’s normal). I felt so blessed and grateful that my little boy didn’t have any trauma from this episode that he had. The doctors had swapped him and told us he is sick with a rhinovirus and he also had mild pneumonia thankfully with that we had no other complications; the doctors said with the sickness it could have caused his episode to stop breathing. Since then, Izaac has been going strong and has slowly been becoming himself again. Izaac has been on meds to help with the pneumonia and been on fluids to help him get back to being better. So far Izaac’s bloodwork, temps and blood pressures have been good and nothing to worry about besides getting back on the right track and getting to feeling better soon. We pray we will not have to be in the hospital much longer and get to being home soon. 💕

Hi 👋🏼 My Name Is Izaac, I Am 2 Years Old And I Have A Rare Genetic Disorder Called GM1 (Gangliosidosis Type 1). With My ...
09/28/2024

Hi 👋🏼 My Name Is Izaac, I Am 2 Years Old And I Have A Rare Genetic Disorder Called GM1 (Gangliosidosis Type 1). With My Disorder I Suffer From Developmental Delay, Hypotonia, Trouble Swallowing (Gtube Fed For All My Feeds/Meds), Seizures, Sleep Apnea, NonVerbal, Scoliosis And The Inability To Sit, Stand, Walk Or Crawl. I Was First Diagnosed With My Disorder Just After My First Birthday, My Mom Noticed I Wasn’t Progressing Like My Two Siblings Were. I Went And Got A Genetic Test Done While Being In The Hospital From An Illness. My Disorder Is Currently Incurable But There Are Treatments That Will Slow It Down From Progressing. I Was Trying To Get Into A Trail But With My Inability To Sit On My Own And Being Past The Age Requirement I Was Unable To Be On The Trial. My Disorder Has Been Progressing I Have Been In And Out Of The Hospital Due To Different Illnesses. Even With My Disorder I Will Have My Good Days And My Not So Good Days But Currently I Am Thriving.

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Shelbyville, KY

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+15025261650

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