Jackson

Jackson was born a healthy 8 pound boy showing no symptoms of disease or any conditions except he has always had acid reflux and has been on medicine since day 5. When Jackson turned five months, he woke up not being able to keep anything down at all. Not even a drop. He had no flu symptoms. He did have brochitus a month or two before so for a while they kept saying that was causing it and he would outgrow it but they were so seperated that I disagreed with them instantly. I knew it was much more than that and it was.. many things he was born with..

The abilitiy to not keep a drop in his stomach still hasn't stopped to this day. He is fed thru a 24/7 continuous drip at a slow rate to his intestines while we drain his stomach when needed so we can keep him safe from choking and aspiration even though he still does that on saliva alone. Sometimes even when being drained he still does. Varies by the day.

He and I are champs with smiles on our faces enjoying as much as normalcy as we can in between the medical world, inpatient hospitalizations, complications, daily therapies, numerous specialists, procedures & testings,labs, etc. He has presented many other issues since his manifestation at 5 months .
He woke up on April 5, 2015 vomiting still happy as can be no other symptoms. Bloodwork and a new feeding regiment was given to us on April 8th and we landed in the hospital for a good length of time on the 10th. It took them 8 additional days in the hospital to get adequate nutrition in him. He lived on Iv sugar water until his feeding tube was placed on April 18th in which it still took a few days to begin tolerating the intestine feeds. He went from 50% at 2 months to 37% at 4 months to far far far below 0% fighting for his life at 5 months. He was 4 pounds bigger than birth and every ounce counted. He is a medical mystery so far but the research team is fantastic and they are bound to keep him safe.

We have been in and out of the hospital since for inpatient, tests, surgeries, tubes, scary stays, planned stays, er's you name it we have been there.. He can regress at anytime and he takes medicine every hour or two to help him. We have come so far and we will not stop at any challege in the way..we will get thru it... no matter how hard it may be...

There is a very good chance we will never find out why it all began but we will see what happens. We also have been told as he gets into the 2- 3 year of age bracket we will really see what the disease is all about since it usually unravels as the kids get bigger and older as well as shows us what he is able to on own. And boy were they correct. Over the last year and a half we have added on so many diagnoses and have been thru you name it with anything from minor occurances to very life threatening hospital stays..

Jackson's multi times a day neuropathy pain is now being controlled by meds causing pain once a week or once every other week. His body is unable to regulate its body temperature and was out of control going from 93 to 103 within minutes all day long bouncing. His meds he now is increasing every two weeks at a slow rate now is at his correct dosage for a few months now.. and I am proud to say he with medicines and a strict protocol of external help.. I do a lot of manual stuff with jackson.. i.e. he wears multiple clothes and long johns every day to keep his temperatures stable... he is now on a regular basis between 96 and 97 with when his body is flaring up goes to 95 or 98... I manage his helmet on and off depending on his excessive sweating which usually throws his body off.. he wears a helmet to manage the balance loss and transition meltdowns that cause damage to the head/brain if not protected so we still aren't there yet but made some progress to keep buddy safe.

The same meds also helped some developmental things, socialization items, and his movement/neurological stuff even his urination is coming back!!Jackson is working hard on balance, coordination, strength and is learning sign language as his primary language.

We have no timelines, just live day to day and keep him safe. Many of his conditions are very life threatening and anything can change in a moment's notice and it often does.. but during all the medical and therapy chaos.. Jackson is happy, spirited, adorable, a fighter and an inspiration to all including me. He inspires me daily. He just loves life and really enjoys it to the fullest. HE is by far the coolest person I have ever met. This little tyke is moving mountains and I am so proud of him.

He surpasses his challenges daily and keeps a good overall attitude in the midst of all going on. He shows the world the true meaning of enjoying every moment of life. He has a long journey ahead of him however he has a big support system helping him each step of the way until someday he reaches the top. You are all our angels and I am so grateful for you.

He currently does 21 hours a week one on one therapy and an additional 30 hours a week with me at home with various activities and strategies and therapies... His corpus collosum brain disorder makes it so he needs all day everyday teaching. He naturally does not know how to do basic functional things. i.e. push a car to play, jump, walk, throw a ball, point to a picture in a book but we direct teach almost everything to him and work hard each day to have him connect the dots and get there. it is so rewarding when it clicks and he gets it..

Thank you for supporting my superhero. Sincerely and with love from the bottom of my heart, Jackson's Mom (Heather).

Updated Current Health List/Problem List as of 21 months old. He is still unraveling so don't know what the future holds but we enjoy each day and more and more trying to gain a handle on the autonomic system and his sensory processing disorder so we can help him.

Dysautonomia
temperature instability
Right hemiplegia cerebral palsy
Aminoacidopathy
Rumination disorder
Feeding difficulty and mismanagement
G-J tube (gastrojejunostomy) dependent
Npo status
Silent Aspiration of thin and nectar thick consistency formula
Frequent Aspiration Pneumonitis
Congenital anomaly of corpus collosum. (Dysgenesis ) with associated perseverative behaviors
Pronation of feet
Gastroparesis (past)
Retching
Viral intestinal infection (past)
Abnormal involuntary spells and movements
1.shuddering and shivering (improved with cyproheptadine)
2. stiffening (rare)
3. staring
4. left head tic and twitch
Anaphylactic dairy protein allergy (by digestion and by touch)
Intolerance sensitivity to soy (blood in g output) (past)
Hypotonia and distonia
Nonverbal
MTHfR 2 copies c677t mutation
Gerd
Acidnosis
Unexplained elevated glutamine
Autonomic neuropathy
Oral phylangea dysphagea swallowing disorder
Sensory processing disorder
Gross motor developmental delay
Expressive Language Disorder
short lingual frenulum
Short stature
Low igf-1 level
excema
pain distressing behaviors
challenging venous access
Borderline Urea Cycle Defect Disorder
Carrier of the Congential Disorde of Glycelation - T
oral aversion
assumed apraxia (will be tested at age 3)
irregular urination
urinary retention
hypoglacemia

His story is so much more than this little glimpse but thank you for following and we are blessed to have so many cheerleading for him. thank you.

 

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.