Journey Begins

https://sites.google.com/site/xaviersplace/

Xavier was born November 18, 2003 at 37wks weighing 7lbs 9oz and 181/2in long he was sent to NICU for excessive grunting later we found out he had a diphramatic hernia. His present weight is 19.7kg height is 108.2cm and his skull is 48.7 cm he is currently 5 1/2yrs. His primary diagnosis is deletion chromosome 9q34.3 aka 9q syndrome. He is hypotonic in some regions. He has global developmental delay and is non verbal. He was born with a ASD which has since closed and pulmonary stenosis which is currently stable. He also had pyloric stenosis as an infant. He has gerd and constipation. He is severly farsighted and has slightly small optic nerves. He has sensory neural hearing loss in the mild to moderate range and is currently aided. He had a morgagni hernia, and inguinal hernial at birth at which his testicle was undesended and caught in the bowel at which both have been repaired. Xavier has autistic lk behaviors and behavioral problems. Xavier is still in diapers and unable to dress or preform hygiene on hisself. He dosent have anteverted nairs but they are some what thin and hypoplastic, he does have prognathism, mild tented upper lip, flat face, Macroglossia he is tounge tied and always protruding, He does have an ear malformation has helix on rt ear His eyebrows are slightly arched very full with medial eyebrow flair. He has midface hypoplasia. Also he has a single crease on one of his hand (they call that something but i forgot). Other concerns include chronic anemia, recurrent infections, asthma, aspiration, mild sleep apnea, and major sleep disturbances, does not go into REM, IGA deficiency, prominence of CSF spaces, high tolerance for pain, temp regulation problems, absent seizures. Xavier has been diagnosed with mild CP at which he receives botox in his legs for. Xavier was recently diagnosed with having a duplicate collectiong system with a enlarged left kidney. Xavier is scheduled for another surgery July 17, 2009 this will be sinus surgery, exploratory on the ears and biopsy of celia from the lungs....We also have gone back to tube feedings due to frequent respiratory infections. Xavier recieves ST, OT, and PT and attends school. This year school will be a full day 1/2 special education half day kinder hopefully fingers crossed...Xavier will be having a central line placed, Hidal Hernia repaired, and a nissen wrap redo on July 30, 2009

Current Meds:
Prevacid 15mg 1 tab BID
Kristulose 10mg 10mg packet BID
Miralax ¾ cap full 3 times week M, W, F
Docusate Sodium 50mg/5ml 5cc QD
Nasonex 1 spray each nostril BID
Neurotin 100mg 100mg-am, 100mg-noon, 300mg-pm
Folic Acid 1mg tab 5mg QD
Singulair 4mg tab 4mg QD
Advair 230 2 puffs BID
Flovent 220 3 puffs BID
Xopenex .63 Q4hs
Meletonin 3mg 24mg QD (Night)
Crantex 3.75cc BID
Methelyin 10mg/5ml 5cc TID
Mirtazapine 30mg 30mg QD (Night)
ICAR 15mg/1.25ml 2.5cc BID
NeilMed Sinus Rinse with Suction TID and PRN
Potassium Citrate and Citric Acid 1100mg/334mg per 5ml 7.5ml TID
Levocarnitine 100mg/ml 3.5cc TID
Respirdal 1mg/ml .5cc-am, .25cc-noon, .5cc-pm
Tenex 1mg 1mg TID
Naltrexone 50mg 50mg (1 tab) QD (am)
Fluoxetine 20mg/5ml 3cc QD (am)
Fish Oil w/DHA 1000mg 1 capsule QD
Carafate 1gm/10ml 4cc every 6-8hs
Robinul 1mg 1 tab every 6-8hs
Phenergan 12.5mg 1 tab every 6-8hs
Clonazepam 1mg 1 tab QD (Night)

Surgeries: He has had ear tubes four times, tonsils and adenoids removed, several central lines, fundoplication/ gtube placement, appendectomy, pylorotomy, morgagny(diaphramatic) hernia repair, inguinal hernia repair, and several colonoscopys, brochoscopy,and endoscopys.

Current Diagnosis

Kleefstra Syndrome
Autism
Epilepsy
Mild CP
PFO
Pulmonary Stenosis
Moderate Hearing Loss
Non Verbal
Aspiration
G-tube
Chronic Lung Disease
Respiratory Distress Syndrome
Mild Sleep Apnea
Renal Tubular Acidosis
Carnitine Deficiency
Neurogenic Bladder
Global Demineralization of Bones
Asthma
Allergies
Temperature Regulation Problems
Blood Sugar Issues (carries a gene will be diabetic)
Insomnia
Immuno Deficiency


DME

Feeding Pump
Pulse Ox
Blood Pressure Monitor
Glucometer
IPV
CPT Vest
Nebulizer
Catheters
Oxygen
AFO
Body Brace

Xavier has both a gtube and a port he receives month immunoglobulin transfusions due to immunodeficiency and he is currently 13yrs old.