An Unforgettable Thanksgiving Holiday. Part 2: NICU Days.

Day 0: 11/25:  Born 1:55 PM at 2 lbs,8 oz.  Good cry after  emergency C section. Saw a glimpse of baby for 2 seconds and was taken to NICU and diagnosed with acute respiratory distress syndrome. Oxygen, IV started and oral  feeding tube inserted.

Day 1:11/26: Named baby Liam Tae In Ahn.  Placed on CPAP, FiO2 at 21% and given surfactants to open lungs up.  Occasional desaturation and is given oxygen as backup.

Day 2:11/27: TPN/ lipids started through a peripheral line.  Started light therapy for jaundice.

Day 3:  11/28:  Started donor breast milk at 3 ml every 3-4 hours.  Lots of air coming out of stomach.  Little bit of meconium.  RNs say he is feisty.  Opens eyes and looks at him.

Day 4:  11/29:  Caffeine started to help with breathing.  Still apneic spells.  US of brain done to rule out any hemorhhages on the brain.  Platelet count drops from 140's at birth to 70's.  Mommy discharged home.

Day 5:  11/30: Ultrasound of brain comes back negative for bleeds.  feedings held due to too much air in the abdomen and to start Echocardiogram to see if PDA has closed up.

Day 6:  12/1:  PDA still not closed.  Started indocin x3 to help close the hole in heart.  No respiratory distress noted after two doses of indocin and so CPAP removed but still receiving Oxygen via nasal cannula at FiO2 of 21% (basically room air).

Day 7:  12/2:  One week old.  No respiratory distress noted.  IV lines keep blowing.  PICC line inserted on right leg.  Held him for the first time as the nurses changed his linen.

Day 8:  12/3:  LCSW visited and gave us a flier on SSI eligibility.  Said because he weighed below 2100 grams, Liam qualifies to receive SSI after discharge.  Also stated that she will fill out a referral to the Regional Center upon discharge.  My heart sinks to the ground. EBCLA and Journeys group start delivering food for dinner.
Susan from EBCLA delivery dinner for us.

Day 9:  12/4: Held Liam for the first time. Discontinued light therapy.  Jaundice resolved.
 Oxygen down to 1/2 liter with no respiratory distress noted.  Feedings (breast milk) resumed 3ml every 3-4 hours and tolerating well.  Liam smiles and looks at me when I call his name.  He did this several times. Had a big BM.

Day 10:  12/5 graduated from oxygen.  No more nasal cannula.  First time doing skin to skin for 2 hours.  Tolerates feedings well. 2 lbs 13.3 oz.  Gained 2 oz overnight (ideally 0.5 - 1 oz gain per day). Eating 8 ml of milk every 3 hours.  Smiles and tries to look towards the sound of my voice.

Day 12:  12/7:  Tolerating 11 ml of breastmilk every 3 hours.  weighs 2 lbs 13.4 oz. Receiving glycerin enemas with good amount of poop.

Day 13:  12/8: Tolerates 16 ml of breastmilk every 3 hours.  Slowly gaining more weight. PICC line, TPN and lipids discontinued. Receiving 3ml D5NS through a peripheral line.

Day 14:  12/9: Tolerates 21 ml of breast milk every 3 hours.  Having some reflux and lots of air in stomach. Lab values come back all normal.

Day 15:  12/10: Tolerates 26 ml of breast milk every 3 hours.  Finally weighs 3 lbs.!! Continues to receive caffeine and continuous 1.6 ml of D5 fluid through a peripheral iv. I changed his diaper for the first time.

Day 16: 12/11:  Aspirated stomach contents through mouth and nosed.  Concerned the aspirate may go into his lungs.  G tube residual is 3 ml.  Daddy had skin to skin for the first time.

Day 17:  12/12: Feeding increased to 27 ml.  Discontinued IV fluids.

Day 18: 12/13:  Feeding increased to 29 ml. Continue with caffeine, Vitamin D3.

Day 19: 12/14:  Nipple therapy started.  Tolerated 26 ml via bottle!

Day 20: 12/15: Replaced Orogastric tube to a nasogastric tube. Nicknamed "Tae Tae" !

Day 21: 12/16: Bottle feeding tolerated only 10 ml from 26 ml.  Weighs 3.6 lbs.  Nurse doesn't think Liam will be able to come home for Christmas.

Day 22: 12/17: Tolerating 30 ml through tube feeding.

Day 23: 12/18:  Liam pulled out his nasogastric tube; Bottle fed him for the first time 30 ml.

Day 24: 12/19: Liam puts on clothes for the first time.  A premie shirt and socks. Drinks 32 ml from a bottle twice a day.

Day 25: 12/20:  Got to bathe Liam for the first time.  Wore his first onesie.

⍈⚽⚽⚽⚽

Day 27: 12/22: Weighs 4 lbs!!! Receives Vitamin D, Iron as supplements.

Day 28: 12/23:  Liam graduates to a open bassinet

Day 29: 12/24: First practice at breastfeeding.

Day 30: 12/25: We have a photoshoot with christmas outfit.  Breastfeeding successful.

Day 35: 12/30: Feeding tube is completely out! Working on tummy time.  He hates tummy time.

Day 36: 12/31: Start on Premie formula twice a day.  Reduce to 24 cal per day.

Day 39: 1/3:  Room in all night with Liam with no monitors.

Day 41: 1/5:  First discharge date:

Discharge postponed until 1/7 due to desaturation during feeding.

Day 43: 1/7: Second discharge date. Discharge postponed again due to desaturation during feeding at night time.

Day 45: 1/9: Third discharge date. Discharge postponed due to desaturation again during feeding.

Day 47: 1/11: Fourth discharge date. He is coming home!!!








Pastor Julie brings curry rice.
Carrie Brings Juan Pollo.
Ed, May, Justine and Alex bring Hawaiian food.
Joyce and Stephanie bring Thai curry with veggies.
Susan brings beef soup.
12/9 Linda and Niels brings Chicken and rice casserole (Luki's favorite!).
12/10 Diane brings pizza, pasta and salad.
12/12 Wanda and Sean brings
12/16 Connie brings noodles.

An Unforgettable Thanksgiving Holiday. Part 1: Labor and Delivery

In the early morning of November 22, I made my way over to Kaiser Montebello clinic for my regular prenatal checkup at 31 weeks gestation.  I had been feeling pretty tired the past few days with more swelling in my feet, face and hands but just brushed off the discomfort as normal symptoms of pregnancy; although, I had been complaining for a while to my OB and anyone who cared enough to ask that this pregnancy felt a little bit harder than my first with Lucas. I was looking over at our family Christmas picture for our holiday cards taken only two weeks prior and remember thinking to myself that I didn't look myself but looked so so tired and heavy like someone about to pass out.  Again, I rationalized that perhaps due to my "advanced maternal age" pregnancy is just a bit harder for my body. I had asked for work excuse notes on a couple of occasions after my prenatal visits only to be told that I was "just fine" and that I wasn't really sick enough to warrant a day off from work. The nose bleeds, the tiredness, backache, swelling were all just part and parcel of being pregnant is what I was told.

  My OB had a family emergency so I was seen by another OB, Dr. Perez, who had the look of alarm on her face after reading by blood pressure and urine dipstick results.  My systolic BP was 146 compared to my normal SBP of 90-100's.  I have been spilling protein in my urine (+4) and had considerable weight gain (10 lbs in 2 weeks) which showed through in the edema on my feet, hands and face. Just a few days earlier, we had gone to Big 5 to buy compression stocking for my arms and ankles.  I told Dr. Perez that I don't ever remember having hand swelling accompanied by hand joint pain upon awakening in the morning with my first pregnancy. She ordered me to drive to the hospital right away and check myself into the L&D department at Baldwin Park saying that they may keep me there for a day or two for closer monitoring.  Even at this point, I didn't feel any alarm thinking they just need to do a NST on the baby and everything will be OK.  Fortunately, I had already packed by hospital suitcase a few days earlier along with my cord blood kit.  I had casually commented to Gabriel a few weeks prior that I had a very strong gut instinct that I didn't think this baby will make it to full term and that I had a feeling he was going to make his entry earlier; although, I didn't think it would be dangerously early.  After dropping Lucas off at school, Gabriel met me at home, loaded my luggage and we headed off to the hospital.

The nurses set up a room for me, rechecked my urine protein level, drew some labs to check my liver enzymes and did a set of vital signs.  I was a bit disappointed that we had to check in at Baldwin Park as I had hopes of delivering at Kaiser Sunset to be closer to my in laws who can watch Lucas so that Gabriel can be with me during delivery.  The liver enzymes were a little bit elevated by not too bad.  My BP was still in the 140's but slowly creeping up and my urine protein was at a +4.  At this point, the doctor decided to start me on a magnesium drip for 24 hours after a bolus dose.  We were told that the baby will not make it to full term and at the latest would have to delivery at 35 weeks gestation and I would have to stay at the hospital for three weeks prior to delivery for close monitoring.  We were anticipating a long wait and 3 boring weeks of hospital stay but my main desire was to keep the baby in my womb for as long as possible. We had heard that a day in the womb is equal to 3 days in the NICU.  We also tried to make arrangements with Gabe's parents to babysit Lucas after school but we found out that at the week of delivery, they had already made plans to go on a cruise to Mexico.  Of course, we can't just get any babysitter for Lucas and his usual nanny was already too busy taking care of her new granddaughter to help us out. At this point, this was our main concern above any concerns related to complications of the birth since we were still hopeful we had time.

On the third day, my liver enzymes had tripled and my SBP was now in the 160's so they gave me another 24 hours of magnesium and an iv push of a dose of labetolol to control the BP.  I also received two shots of a steroid injection to help speed up the development of the baby's lungs after delivery.  Being on an uncomfortable gurney for 48 hours on a magnesium drip while pregnant is by far one of the most uncomfortable experiences I have ever had.  On Thanksgiving Day, my brother--in-law's family came down from San Jose to spend the holiday with us and have dinner at the Sheraton in Universal City as we had done last year.  The following day, Black Friday, the doctor informed us that due to my unstable condition, they will have to do an emergency C section that very afternoon so that I will not develop the HELLP syndrome compromising my health and that of the baby.  From this point forward, everything seemed to happen so fast and yet it felt as if time moved in slow motion.  All the specialists like the anasthesiologist, neonatologist,and OB came and spoke to me about the risks and complications so as to obtain informed consent in writing before the scheduled surgery at 3PM.  My in laws and Gabe's family from San Jose  were coming to the hospital around 2 PM just to visit, not knowing at this point that delivery was going to happen an hour after they arrived.   Around 1PM the doctors said they were going to do the surgery right away because my labs were looking even worse.  We worried about who would watch Lucas during surgery and if Gabe would be able to be in the OR with me to witness the baby's birth. Fortunately at this time, as if by a miracle (to me, at least) Gabe's family had already arrived early to the hospital and within an hour of their arrival, the baby made his entrance into the world at 1:55 PM with daddy's presence in the OR.  Tears of joy flowed after hearing the baby cry and learning that he had good APGAR scores.  

A Broken Hallelujah, A Shattered Praise

About a decade ago, when I moved back home to care for my dad in the end stages of liver cancer, my dad and I had gotten into an argument as we often did those days.  He was irrational and I was frustrated and stressed from the worries of my future and the fatigue of being his caregiver.  I remember how the neighbors laughed at overhearing our family discord and I thought how callous people are and how foolish is all of life.  And, it made me conclude that the majority of people are not idealists with lofty ambitions to better humanity and help the plight of the suffering, but  rather, petty, self centered, greedy beings here to satiate their own immediate needs which includes only their own kin and kind.  A decade later, as a mother of a child with special needs, I reflect back on that time and wonder to myself what chance in hell my son has in the world.  It is no wonder the world has all the problems that it does which seem insurmountable; humanity is not this noble race of people who are yet capable of divine ambitions.  We are slaves to our own biological imperative, the law of nature which can be cruel and merciless.  On a radio show, I learned of a type of wasp that would take "hostage" a cockroach for months as its larvae suck all nutrients from the cockroach's body until it dies as a shell of emptiness.  And, I wondered how a loving God could create such an evil mechanism for life as this?

And still, I cling to the hope of an all loving being that cares for everyone and is available to everyone who needs spiritual nourishment.  I've given up the hope that this God can solve all our problems and heal all wounds; no, the only assurance I have is that He loves us unconditionally until the ends of the world and I have accepted that that is enough.  It has to be enough for all other expectations lead to despair and disappointment.  "Hope is the bane of the idealist."

So, I can still sing and praise God albeit the song is tinged with a hue of melancholy and all I can sing is a "broken hallelujah and my offering is but a shattered praise".  It may not sound the prettiest but I refuse to give up hope that He listens and consoles me in my darkest hours.

"How does the Truth that your Child is Made in God's Image Compare with your Experience in the World as a Parent with a Child with Special Needs".

Disability service (click for link)

A few weeks back, Evergreen Baptist church held a disability awareness service led by our Journey's group leader, pastor Julie Ono.  Unfortunately, I was unable to make it as it was my weekend to work.  Although I encouraged Gabriel to attend, he seems a bit reluctant to attend church without me.   Fair enough, I think he still identifies more closely with his Catholic faith.  Children and young adults living with disability in the church community got up on stage and read bible passages or sang songs.  Videos of some family members were also showcased and Julie shared stories of families who were treated unkindly by other church members for their childrens' disability.  In one story, she recounts how a pregnant mother with a child with dwarfism was approached by another church member and admonished for trying to have another "deformed" child.  Hopefully, stories like this helps others to be more sensitive and careful in what is spoken to families living with a disability.  

This sermon was also a "coming out", if you will, for pastor Julie to share her struggles living with ADHD.  It was very brave of her to share her own struggles and expose her vulnerability and I appreciate how truly  authentic she is with everyone and in my mind, it gives greater credence to her as a leader.  

In one segment, a videographer visited one of the Journey's meeting to discuss the question of  "How does the truth that your child is made in God's image compare with your experience in the world as a parent with a child with special needs". 

 You can see the video on the link here: 
Journeys testimony  password is defy123

We have yet to experience unkindness from strangers for Luki's disability.  I think most people just don't care.  We live in a huge impersonal metropolis of LA with over 20 million people and I think people  are just too consumed by their own lives, their own problems and worries to take notice of us.  Which is a good and a bad thing.  We tend to sequester ourselves to our own little sphere of family, friends, church and the invaluable online Facebook community of other families living with Dup15q Syndrome.  

The thing I am recognizing is that everyone can learn something about themselves from people living with disabilities and their families.  It is not just the person with the highest IQ living in the loftiest ivory tower of knowledge who can impart wisdom and truth.  We can learn from everybody and encounters with people that have disabilities shine a mirror into our own hearts in a very visceral and immediate way.  Perhaps, everyone we meet, whether they have a disability or not, serves the purpose of helping us define and figure out who we really are at our core.  In the case of encountering disability, for some, it stirs up feelings of  disdain and the urge to reject or express disgust.  For others, it may be a sense of  pity and relief that it is not them or theirs that have to go through such difficult ordeals. But,  there are those more refined souls who have great compassion and understanding for God's deeply loving purpose for sending His children in such tortured bodies and minds. 
I am not saying those with a disability are all knowing and above others as some would like to claim and it would be a disservice to treat them as such as it ostracizes them even further as being "other" and "different".   They are just people like everyone else with their own issues, weaknesses and faults and they should be allowed to experience their humanness just like everyone else without ridicule or shame.  But having said that, as Lacey's mom noted in the video, I can't help but agree that people like Lacey are free from racism, sexism, hatred, resentment,classism, etc that most typical people are captive to.  Lacey just smiles at everyone without refrain which  leads me to believe that perhaps people like Lacey are more closer to the divine than human.  
Hopefully, this attitude of understanding becomes habit and spills over among all people, not just those with a disability. Can you image what a wonderful world we would live in if that were the case?  It is to reach this state of understanding , acceptance and love among all people that perhaps serves the purpose of having disability in our lives.  

Our Latest Adventures in CAM (Complementary Alternative Medicine): Herbs and Accupuncture.

L gets accupuntrue in the head, or at least we tried.

L doesn;t like to be fussed with today.

After seeing amazing seizure control with my "miracle oil concoction" for almost 60 days straight, I got inspired to further investigate into this world of CAM. After contracting the "summer flu" from me, L started having seizures again.  The physician advisors for Dup15q mentioned in one of their science conference presentations that an illness such as the flu can trigger seizures even when  once dormant.  L is still congested and coughing and so am I for over  a month from whatever this nasty bug is.  I've tried the "z pack" with not much improvement.  Really, I think this is viral in origin. I am hesitant and scared to start any cold medicines as I've heard from some Dup15 parents that antihistamines have triggered their child's seizures.  I have L on a homeopathic remedy but using it sparingly. 

After almost 60 wonderful days of seizure control,  he started having one every 5 days, then every 3.  We are now back at one a day in the morning after he wakes up from sleep.  The only known trigger to his seizures seem to be deep sleep.  Now, where he never had afternoon seizures, if he naps in the afternoon for a long period of time (2 hours or more) he is more likely to have a seizure.

Last Monday, I took L to see an acupuncturist and an Oriental Herbal Medicine doctor at Dong Guk University of Oriental Medicine in Los Angeles in hopes of really stopping the seizures once and for all and getting him off  all AED's.  There are three campuses for this university that specializes in oriental medicine and one happens to be located in the city I was born in Korea, KyungJu.  It is a reputable university that works with western medicine to treat patients.  I've even heard of surgeries being performed with no anesthesia  with complete pain management only with acupuncture.  Although at times I have a disdain for the impersonal urban sprawl connected by congested freeways that is the metropolis of LA, I am grateful for its diversity where I can get access to things like Dong Guk University or anything else from around the world. People living in other parts of the country or the world can't say the same.
I remember a scene from my childhood in Korea in one of the rural villages, an elderly grandmother was brewing her herbal tea on an open fire outside her front yard.  The smell is so distinct and no child ever likes to drink the bitter brew.  In my own  household, my aunt would occasionally see her herbalist, come home with bits and pieces of barks, strange exotic looking leaves and fruits in paper packages and make her brew in a ceramic kettle on the kitchen stove and stink up the whole house (if not the whole block) for days.   At times, I would find what looked like centepedes and deer antlers.  She would sometimes have the kids drink it and it was horrible.  As I get older though, the rare occasions that I smell the Korean herbal medicine, makes me nostalgic and long for "home". 

Late in the evening when everyone is asleep and I am on the University of Google, trying to find what would help control L's seizures, I came upon this research paper Effect and Safety of Shihogyejitang for Drug Resistant Childhood Epilepsy.  The researchers claim they had great seizure control which was even better than the ketogenic diet.  I decided to take this paper to an herbalist at Dong Guk University in LA and have her mix the herbs exactly as specified in the paper.  The clinician, Dr. Lim, also a lecturer at the university said she is very familiar with different recipes for seizure control and has even gone to China to study the latest CAM for seizure control in children.  I handed her the paper and showed her the recipe and she said she needed time to translate it as it is all in Latin.  She told us to come back in two days and she would have the herbs ready.   I was expecting little pieces of barks, wood, leaves and such wrapped in little paper origamis but to my surprise, they were small pellets in powder.  She told me to dissolve it in a little bit of water or juice  and give it to L twice a day.  I mix the powder/pellets in his liquid resveratrol and a few drops of water then administer it in a syringe.  No more bitter teas to drink which is good because I worried whether L would take it.  The only thing she said she took out of the formula was the ginseng because it was "too hot" for an active 5 year old boy with lots of energy.  L does get winded after school and still requires at least an hour nap to get through dinner and bath at night.  She said to call her after 7 days at which time we should see some improvements.   Maybe the ginseng would have made it a lot more expensive, too. 

This is the formula specified in the article:
7.0 g of Bupleuri radix (Bupleurum falcatum L.), 4.0 g of Pinelliae tuber (Pinellia ternate (Thunb.) Breit.), 2.0 g of Scutellariae radix (Scutellaria baicalensis Georgi), 2.0 g of Zizyphi fructus (Zizyphus vulgaris var. spinosus), 2.0 g of Ginseng radix (Panax ginseng C.A. Meyer), 1.5 g of Glycyrrhizae radix (Glycyrrhiza uralensis Fisch), 1.0 g of Zingiberis rhizoma (Zingiber officinale Roscoe), 2.5 g of Paeoniae radix (Paeonia lactiflora Pallas), and 2.5 g of Cinnamomi cortex (Cinnamomum cassia Blume). The herbal decoction was made in the hospital pharmacy. All the herbs comprising SGT were mixed with 120 mL of purified water and then decocted for 120 minutes at 102°C to 103°C until half of the original amount of liquid was left. 20 mL of the decoction was packed into each vacuum pouch by an automatic packing machine. Patients of age five or older were asked to administer one pack of the decoction 30 minutes after each meal, three times a day. For patients under five, the daily dosage was adjusted based on the conversion table of von Harnack.



This table shows how the herbs work better than the ketogenic diet.
Table 5

Comparison to studies on ketogenic diet in patients with refractory epilepsy.

	Treatment	Number	Median ageat start of treatment	Response rate						Retention rate
				At 3 months		At 6 months		At 12 months		At 3 months	At 6 months	At 12 months
				>50% reduction††	Seizure-free	>50% reduction††	Seizure-free	>50% reduction††	Seizure-free
Our study	SGT	54	16.5 months	68.5%	35.2%	44.4%	24.1%	22.2%	14.8%	81.5%	53.7%	22.2%
Kang et al., 2005 [18]	Ketogenic diet	199	57.9 months†	61.8%	35.2%	57.8%	33.2%	41.2%	25.1%	87.9%	68.3%	45.7%
Sharma et al., 2009 [19]	Ketogenic diet	27	2.5 years	59.3%	11.1%	48.1%	14.8%	37.0%	18.5%	88.9%	55.6%	37.0%
Suo et al., 2013 [20]	Ketogenic diet	317	39.6 months†	35.0%	20.8%	26.2%	13.6%	18.6%	10.7%	62.8%	42.0%	24.3%

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^†Mean age.

^†† >50% reduction included seizure-free cases.

SGT, Shihogyejitang.

Can Accupuncture help Epilepsy

We also bought an accupuncture wand which simulates accupuncture through mild electric currents.  L seems to tolerate it OK.  One can even purchase such a devise on Amazon. Link here.   We tried this for 20 minutes at night time.  Not sure exactly what it is doing for him though.... I think this would work great for my headaches.


Update: After 5 days of the herbs, L's seizure seem to have gotten much much worse.  They progressed from loss of consciousness to almost tonic clonic so we stopped.  These herbs don't seem to be good for L's seizures. May or may not go back to the clinic to give updates.

Back to square one.  Keppra increased to 1 gram a day with no real benefits noted.  L has developed a weird rash on his left cheek which I think is probably from the increased keppra.  sigh.....

2016 Scientific Symposium Two Sides of a Coin: Deletions and Duplications on 15q

Finally got a  hold of the  2016 Scientific Symposium (click for link) Two Sides of a Coin: Deletions and Duplications on 15q.  Dr. Shefali Jeste's presentation had a snippet of Lucas during a clinical trial study (at point 36:00).  It is amazing how far he has come in the last two years.  Looking back, he wasn't even able to sit on his own without support. He still has hypotonia and poor gait but has improved a lot since then.  He also did not have any seizures back then. For the last 40 days, he has had one day of seizure which I think is pretty good compared to daily seizure activity for five months straight. Hoping this trend lasts for a long time.  

Sleep Study

The above video presentation by Dr. Thiebert worries me a bit about possible seizures occurring during sleep in the night.  Although waking hour seizures are under control for L, I have no idea what is happening during sleep in the night.  He does occasionally wake up in the middle of the night but tends to go back to sleep on his own within 30 minutes to an hour.  Do seizures wake him up?  Seizures in the day time had the opposite effect wherein he would fall asleep for an average of 1 hour, post ictal.  An overnight EEG sounds like  a good thing to do.  Our neurologist hasn't gotten back to me about stopping keppra.  I am assuming no response is a good response as he usually got back to me almost immediately when things were getting worse.  

 We are going in for another similar study mid September at UCLA with Dr. Jeste.  

First Week of Kindergarten. New School. New Teacher.

New school.  New Teacher.   The kindergarten teacher at the new school who had been teaching for over 30 years just retired this year and we have a new teacher who has never taught special needs kindergarten before.  She said she has only taught second graders.  She seems a bit confused and nervous.  I asked for a class schedule and was told she hasn't made one yet... This is the second week of school.  She seems awfully worried about Luki's safety and insists on him having his helmet and knee pads on at all times.  I told her I want him to feel a bit more independent and not so restricted. They can get itchy sometimes and I don't want him having a meltdown due to discomfort.  We compromised by him wearing them on the playground only and not in the classroom. He has been having a tough time adjusting to kindergarten (crying at separation).  The new school time is 2 hours earlier than his PreK and early morning is the most vulnerable time for seizures, which doesn't help.  One time, the school nurse even called me to pick him up due to non-stop crying for 2 hours.
The new teacher and staff seem a bit baffled by Luki so I wrote up a little care plan and information  to help the teacher and aide feel less anxious and worried about him and to better understand his needs.  Hopefully, this helps.  

A little information about Lucas 

Lucas has a rare genetic condition called Dup15q syndrome which causes developmental delays, poor gait, speech delays and autism.  Here is a description of his condition:

Sensory issues: He has sensory seeking behaviors like rubbing his hand against the carpet or different textures. His chew toy necklace helps me calm down and feel safe. And, he uses it quite often.

Motor issues: poor motor planning, ambulatory with unsteady gait, hypotonia.

Therapies he receives:   physical, occupational, and speech therapy at school twice a week,

Special Diet:. Soft, easily digestible foods. Has difficulty chewing hard foods such as carrots, candy; learning to bite into a whole apple.   Needs assist with meals. Can use a sippy cup but not an open cup.  Needs practice putting cup down without spilling. Can use spoon once food is on the spoon but unable to scoop food independently. 

Medical conditions: Propensity for seizures; irregular EEG patterns.  His seizures have been controlled for the past month but we keep an extra close eye on him in the morning right after he wakes up which is when his seizures happen the most.  He has never had seizures in the afternoons or after about 10AM.  We are on a modified schedule in the mornings where he will be dropped off between the hours of 8AM to 9AM – depending on how he is doing upon awakening. 

Verbal: NO

Ambulatory: YES with supervision especially in the playground.  He loves to climb on top of things at home.

Dysphagic: NO

Emotional disturbances:  NO, very mellow personality but experiences high anxiety in unfamiliar places and situations.  He gets very scared and anxious at the sound of leave blowers, lawn mowers and vacuum cleaners. 

Favorite Food:  not a picky eater, eats almost all foods well as long as it is soft and easily digestible. He likes hot dogs, hamburgers, French fries, burritos, rice and beans, cut up apples, oranges, blueberries, grapes. We try to limit his intake of sweets (candy, cakes, sugary drinks) due to seizure risk.

Favorite toy: Scout, the talking dog. Toys that light up and make music.

Favorite DVD/tv shows: Baby Einstein videos, Preschool Prep learning DVDs, My Talking Toddler videos, Any children’s program with bright lights and lots of music. In pre-K, his favorite time was circle time when everyone sang songs. 

Special equipments:

Lucas does not wear leg braces; he sometimes wears knee pads just in case in falls on his knees but is not a necessity.  He wears glasses.  He wears a helmet which helps him to keep his glasses on. Otherwise, he likes to fling his glasses off. He likes to take his shoes off, too. Usually, he wears high tops. On very hot days, we try not to keep the helmet on too long. 

Goals:

1.We would like Lucas to gain as much independence as possible.  In preK, the teacher felt he did not need a 1:1 but one may be helpful for safety. 

2.We would like him to improve more in his hand – eye coordination like placing tokens in piggy banks, puzzles, using utensils to eat.

3.He is incontinent of urine and stool.  Potty training is a big goal we have in place.