Emma Joyce

Thank you to Rhonda for sharing her beautiful daughter, Emma Joyce's, story with us!

Emma was born April 20, 2007. Not long after, I had sensed “something” was not right. Emma seemed jumpy, delayed and not able to follow vision wise. At her 2 month immunization appointment, I asked her doctor to take another look at her. She was then referred to the pediatrician. A few weeks later at her appointment, he immediately sent us to Winnipeg Children’s Hospital. She ended up getting admitted for testing, which was to take a couple days. It turned into a very long three weeks. I kept telling the doctors it was like she was having a seizure. Finally they called the neurologist and he didn’t think so, but sent her for an EEG to be sure. Little did I know the next 45 minutes of that day would change our lives forever. They told us we were to wait in the hallway for about 45 minutes. After 15 minutes they called us in to tell us Emma has had 4 seizures since she had been in there. Although I was devastated, I tried to look on the bright side, thinking lots of people have seizures, it can be managed. I did not realize how dead wrong I was. Emma was given a load of Phenobarb to settle the seizures while they could do further testing. She was so sedated, she was out for 3 days, and I was starting to go crazy. She underwent numerous testing, such as EEG (had it on for a few days), MRI, LP, numerous blood tests, PEG Radioactive testing, and that is to name a few. She was having 20 + seizures a day, which were Infantile Spasms, so it just looked like she was jumping or startling while falling asleep, while sleeping or awakening.

She was finally released from the hospital and sent home on ACTH injections, which is a steroid. It worked wonderfully to control seizures, however, you cannot be on it forever. When she stopped the injections, we had numerous trips to ER here in Brandon as she was having seizure clusters ( seizing, brief stop, then seizing again, etc). We have had so many adjustments to her meds.

In June, 2008, her neurologist finally told me what she was diagnosed with, although I am pretty sure he knew before. She has Early Epileptic Encephalopathy of Infancy, otherwise known as Ohtahara Syndrome. It consists of, but by all means not limited to, cortical vision impairment, severe developmental delay (she is like a newborn baby), seizures (very difficult to control with medication) and feeding issues.

In January, 2009, Emma was admitted to WCH to start on the Ketogenic Diet, which it a medical diet often used to control seizures. At that time, she also underwent a feeding study, at my request. Since then she has been restricted to have anything by mouth, as she was putting 80% into her lungs, causing her to have aspirational pneumonia. She was scheduled for G Tube surgery. The night before surgery, she had a fever, which turned out to be the start of another pneumonia. Surgery was canceled and the next date was February 13th. She remained in the hospital all this time. After her surgery we returned home on the 18th of February. It took a lot of getting used to, as I was having to use the feeding pump, IV pole, etc. She adjusted wonderfully, life was great!

March 10th came along and Emma started having severe diarrhea. Her doctor and I figured, probably just a flu bug. Over spring break, we went into Winnipeg as she had appointments with Metabolics, neurology, surgery follow-up, and her pediatrician. They were all clueless as to WHY she would still be having diarrhea. We collected stool samples and sent them away, with no results to show anything. We took her off the Ketogenic Diet; put her on Nutren JR. with pedialyte to see if that worked. It didn’t. At the end of April, she was still the same. We went to the Rehab center for Children clinic to see her feeding specialist. We switched her over to a formula that is the most broken down formula you can get. After 5 days of being on the new formula, Emma was nothing but bones, she dropped weight like crazy. Her eyes were sunken in and she looked absolutely horrible. After having her on straight pedialyte, and no result for the better, I took her back up to the hospital here. The doctor could not figure out why either, especially after getting pedialyte on continual feed. Emma was so dehydrated and malnourished, that her sodium was so high; she was at major risk for a stroke. They admitted her to BGH. After being in hospital 4 days, with still no answers, Emma developed pneumonia again. Her doctor refused to prescribe her an antibiotic, and she was so weak, she kept desating and they finally transferred her to Winnipeg via ambulance. She was admitted to CK3 there, and shortly after, rushed into PICU.

In PICU, seeing Emma for the first time, hooked up to BIPAP, I thought, my God, this is it, this is how I am going to lose her. It is a mother’s worst nightmare. I was standing beside Emma and realized they had her G-Tube hooked up to a drain, to empty out her tummy. I asked the nurse in there, what is that coming out? Yes, it was poop. The next day, she underwent a fluoroscopy, to test where the fluid is going when put into the tube. That is when we finally found out why she had diarrhea in the first place. Her G-tube was in her colon, NOT her tummy! Needless to say, she was very dependent on the BIPAP machine and still very weak. She spent 2 months in PICU and up on the ward. Finally, we were sent home at the end of June, once Emma had recovered wonderfully as she could have. She was sent home on oxygen, and she had an NG and NJ tube for feeding and we were awaiting her surgery. First two surgeries were canceled due to the H1N1 breakout at the hospital in Wpg. All of the PICU beds were full and they would not do Emma’s surgery without a bed In PICU for her after.

Finally, at the end of August she went for surgery. Emma had to get a fundoplication, which is the stomach wrapped around the esophagus to prevent refluxing, repair of the two fistulas (hole in colon and stomach from first tube) and a new G tube. I made the decision for her to have an Epidural instead of Morphine for obvious breathing issues. After her surgery, she was placed back on Bipap, just so they didn’t lose headway with her. The next day, she was wonderful! She came off the BIPAP and was back on her O2 mask. After a few days in PICU, we were sent up to the ward. After a few days and after they were sure everything was fine and her feeds were being tolerated at continual, we came home!! When we came home, it was my job to work Emma up in volume and down to a bolus feed (one feed at a time). She is currently on 4 feeds a day, with each one lasting 2 ½ hours.

She still requires home oxygen, as well as portable when we leave the house. She is always on an oximeter, which shows her heart rate, O2 level, and will alarm when desating. We were so fortunate to get her wheelchair. It allows Emma to be most importantly of all, comfortable. It also allows me to take her out and feed her at the same time, as they put an IV pole on it for her feeding pump and her feeding bag and also allows me to hang her backpack oxygen on it.

We still have numerous appointments to Winnipeg. Emma goes to Neurology, Metabolics, Respiratory, her pediatrician, her ophthalmologist and the Rehabilitation Center for Children (which I also usually have to transport her really large equipment) in Winnipeg throughout the year. She also has a few appointments in Brandon, usually the doctor here, and all of our fun ER trips, which really add up in a year! Her PT/OT/ST come to the house now, as well as her OT from the Canadian National Institute for the Blind.

 

Emma still gets a lot of respiratory infections, due to her swallowing issues, and I’m sure the Trachial Malaysia is part reason. Since being home, Emma has went from a mere 15 pound girl that was first admitted into Brandon last spring, to a very big 41 pound girl!! She is such a strong girl and such a little fighter, and I am so proud and blessed to have her in my life.

Better for Knowing Her

by Adriane of Our Story.


Greetings! My name is Adriane, and I am married to a wonderful guy, Nathan, who serves our country as a pilot in the Marine Corps. We have been married 8 years and lived in 5 different states during that time; we're currently calling the tar-heel state of North Carolina our home-sweet-home.

I was 26 years old when we found out that a second child would come into our family. Our first was 5 months old at that time; a pretty little baby named Sade. We were very excited at the prospect of having two little girls causing chaos and stealing hearts together. Our first daughter had been a very uncomplicated, run-of-the-mill pregnancy and delivery. I had lost a child from a previous marriage, so we felt very blessed to have her. We also foolishly thought that since I had previously undergone that painful loss, we were "in the clear", heartache-wise. I paid my life-lesson dues, right? No more sessions needed.

Although we had no reason to suspect a problem with this second pregnancy, I found myself feeling more anxious about this child's well-being. Just an under-the-surface uneasiness, so subconscious that although my husband felt the same thing, we never even brought it up. But I had a handful of sonograms done just to "make sure" that she was fine. And aside from my little peanut girl being in breech position, everything was.

Near the end of my pregnancy, we decided to have a procedure done to turn our baby - newly named Kylee - into the correct position. I was hesitant about it, but after repeated reassurances by my OB and with the thought of a dreaded c-section looming in my mind, we agreed to the plan. The version was done so quickly and seemingly-effortlessly that I laughed at myself for being so foolishly nervous.

I went into labor at 3 am on February 25, 2006. Nathan and I relaxed as the epidural took effect, chatting and dozing while we waited. We believed the labor was progressing like clockwork. Finally it was time; I cheerfully started pushing Kylee, eager to see her beautiful face for the first time. Looking back I realize that those were the last moments of what we refer to as our "former life"; a peaceful, carefree stroll through sunshine-filled days and sleep-filled nights. In an instant, everything changed. There was my OB, placing and internal monitor, pushing my bed out into the hall and shouting at nurses to prepare the OR. There were the nurses, scrambling to prep trays and equipment. There was the anesthesiologist, pushing meds and placing an oxygen mask. And there was the most horrible sensation of being ripped in half. Finally, there was Nathan, mirroring my look of shock and confusion.

"Come here, little girl" the OB said, and I expected to see a squirmy pink baby placed on the infant warmer to my right. Instead, I saw a tiny, lifeless, blue body. No, this can't be right. I watched as the pediatrician resuscitated Kylee, intubating her, and whisking her away to the NICU.



An hour or more later, when my involuntary, pain-induced tremors had stopped and I realized that indeed I would live, I visited my Kylee. My "NICU baby". As a nurse, the sight of monitors, IV's, tubes, etc was old hat. As a mother, I had also seen this before, and it wasn't a memory I had intended to relive. "She'll be fine" I told myself, although she also was racked with tremors - seizures, per the nurses.

Kylee was flown to another NICU, and stayed there for nearly 8 weeks. There we learned of the pervasive hypoxic-induced brain injury, labeled "moderately severe". More diagnoses followed shortly thereafter: hypoxic-ischemic encephalopathy, laryngomalacia, GERD, seizure disorder, dysphagia, cortical vision impairment... Still, we didn't understand the enormity of our situation. Denial, I guess. Kylee never demonstrated a suck or swallow reflex, and so had a g-tube placed along with a nissen fundoplication to stop the refluxing formula cascade from her nose and mouth. The official cause of her traumatic birth was ruled to be cord compression, although no visible evidence (knots, nuchal looping) was apparent.

We spent five days at home - five sleepless days setting up equipment (feeding pump, suction equipment, apnea monitor), meds, schedules, and moving her "room" to the living room, because there was no way she could share her older sister's bedroom now. We watched as her pale skin grew paler, and as her labored breathing grew shallower. Finally we rushed her back to the hospital to note an oxygen saturation rate of 50%, where she stopped breathing altogether and was again resuscitated by the same pediatrician that saved her life on d-day. She spent another month in yet another hospital, and was eventually released with home oxygen, an oxygen saturation monitor to replace the apnea one, and in-home nursing at night.



We were given hopeless prognoses and told to enjoy our life with our baby as long as we could. But what followed was not death, it was a new life. A life of doctors' visits, therapy schedules, and hospital stays - 20, to date - and of more diagnoses; chronic pneumonia, infantile spasms, hip dysplasia, osteopenia, reactive airway disease. A life of learning about cerebral palsy - Kylee's "umbrella" diagnosis, about what kind of child she would be, and about the new world we had joined. Many had joined it before, and it helped to know that although this place was less populated, there were still friends there.

After Kylee's birth, we felt like we had literally fallen into a black hole; the deepest abyss on Earth. I prayed but felt nothing but sadness and despair, and I wondered why Heavenly Father had left us.

On one occasion, I found myself sitting alone in my car. I had just kissed Kylee goodbye in the large Children's hospital where she was staying, and prepared to pick up Sade from her Grandma's house. Nathan was in our hometown as he had to return to work and school. I realized as I sat there, that each of us had been separated by this event, and that the attempts to be with my two girls in their two separate places was killing me. This wasn't how families were supposed to be. I admittedly cried - that kind of heart-broken, unrestrained cry that comes from weeks of suffering.

No sooner had my emotions overcome me than I instantly felt at peace. I felt like some unseen force had practically touched me and taken away my sadness, bringing me instant comfort and drying my tears. I realized that this was Heavenly Father's comfort, and that He was indeed with us. He hadn't left; I just hadn't been able to see Him from where I was standing. Slowly our understanding grew, as well as our ability to acclimate to our new life. We realized that our daughter was injured very severely - unable to reach out even one arm, unable to play with a toy, unable to hold up her own head. I admit that ever milestone she missed, every evaluation that ranked her as a "newborn" despite her progressing age, was very hard to note. But I also started to see Kylee for who she really was - not a medical creature to be diagnosed and tested and treated, but a perfect, innocent, angelic spirit. My frequent prayers that she be able to communicate were answered, as Kylee can express herself in her own ways - smiling, crying, making some verbal sounds, and providing minute changes in facial expression or posture that let us glimpse into her thoughts.

Kylee loves being held. She loves being snuggled and kissed. She adores watching other kids - most especially her older sister, who enjoys a very typical affectionate/jealous relationship with her younger sibling.



Kylee demands attention and entertainment; boring as easily as any other four year old. Swimming, swinging in the hammock, going to special-ed preschool, listening to favorite songs, getting tickled, bath time, and bedtime massages are favored activities. Yes, she is a lot of work. But we realize that "where much is given, much is required" - and that in order to be blessed with such a beautiful, beloved child we have to put in a little more effort for the privilege.



Life is "normal" for us now. I really don't even remember what life in that former world was like. I know I wouldn't trade Kylee for it; I wouldn't trade her for anything in existence. I think of what happened in comparison to riding on a train. We had been quietly riding along on our passenger train of life, taking in the scenery, when BAM! The whole darn thing derailed. That train received some significant damage, and the repairs took some time. But month by month, and year by year, it again started to head for the previous destination. And pretty soon, the people on board were chatting and carrying on nearly as before, practically as if they had forgotten the mishap. Except for the fact that they were all wearing bandages. And that this time, we refused to ride. We drove.

I will never know if I could have prevented her injury by having a scheduled c-section instead of a version. I will never know if her cord was pinched by her shoulder, squeezed by her fist, or pinned somewhere else by her body. I will never know if turning Kylee moved that cord into a compromising position or set up the chain of future events that unfolded. I will never know if having a different medical course early on - infant cooling, cord blood reinfusion, or earlier at-
home oxygen - would have caused a more favorable outcome in her abilities today. But I do know without one shred of doubt, that Kylee is living the life that was intended for her, that I love her more than could be imagined, that we are blessed to have her, and that she is making each of us, individually, a better person for knowing her.

Kendall's Hope

"When the world says "Give up," Hope whispers, "Try one more time." ~Author Unknown

Somewhere I heard the quote "The end of a matter is more important than the beginning." Not sure where I read/heard it, but I like it. It definitely pertains to my darling Kendall. It doesn't matter where, when, or why all of her issues started, what really matters is that we cherish every single day we have with her, and every single milestone she hits. As a family we have come a very long way with acceptance. I can honestly say I wake up in the morning happy again. There were quite a few dark days in the past year when that wasn't the case. But, like every other hurdle in life, you keep on trucking, and eventually you get through it. You become stronger in the process. Justin and I have become closer. Kamden has learned patience. I have witnessed my 8 year old's faith evolve. He has an amazing understanding of the world and a relationship with the Lord. We have all learned how to pray. As a mother, I now treasure everything most parents take for granted in my children. And while I know we will continue to have occasional dark days, or self pity days, they seem to be spacing out.

I have decided to do a post that recaps Kendall's medical issues from the beginning. Mostly, so I can refer back to this all in one place. I wish every time we went to a new Dr. or had to go through Kendall's history, I could say "check my blog!" But that's not the case. Maybe this will help someone out there who, God forbid is in a similar situation. I also want to link all the medical terms to sites that explain them well. It will help me to gather my thoughts and our most recent findings with her clotting issues. I'll try to give the Reader's Digest version, but I've never been very good at giving the short story. Once I have this out, I vow to myself to focus on the "end of the matter" and stop wondering the dreaded "what if's." So here goes.

My son was born 7 years before Kendall with no issues. He was text book! My water broke at home on his due date. I went into labor on my own, and had a natural birth. My pregnancy with Kendall was more or less uneventful. I was 29 years old with no history of any health problems. My blood pressure was fine. I am RH negative, so in both pregnancies I took the needed injections. Toward the end of my pregnancy, there was protein in my urine, but I was assured that was OK as long as there weren't any issues with my blood pressure. Kendall was in a Breech position pretty much every time I had a sonogram.


At a routine sonogram around 28 weeks, they noted "enlarged ventricles." My Dr. didn't seem too concerned, but did refer me to a perinatologist. My whole family went into a tail spin with worry! But in the back of my mind, I thought everything would be OK since we had relatively healthy people in our family. The next day we were fit into the Perinatologist. He was a little man with annoying habits. I hated him from the beginning. He said her ventricles were "borderline enlarged" at only 12 mm and we were going to watch them. HOWEVER, she had two white spots in her heart...calcifications...and a hole in her heart. He said there was a chance she had Downs, and recommended an Amnio. He said we could abort, but there was only one state that would do it and we would have to move quickly. I remember looking at him, seeing his lips move, but no sound coming out, and everything was in slow motion. He left for a minute and told us to think about it. There was no thinking required. Before we got pregnant, we knew we would love our child no matter what. We declined the amnio and of course, the abortion. He came back in, we gave him our decision, and he handed us a card for a scheduled EKG at Children's Hospital. We went home and I cried for the next 2 days. I discovered the Internet and learned more about the heart than I ever wanted to know. I found the worst case scenario, the best case scenario, and prayed.

We went for the EKG and received the results the same day. Her heart was perfectly normal. A month later we went back to the perinatologist for a follow up. My mom was with me, Justin at work. That day he did a sonogram, and came back in putting on the same show. He looked like he was giving a speech to a group of medical students. He asked if my mother was my sister (clearly...she isn't....she had me when she was 38....although she looks great for her age...clearly....NOT my sister....so that just pissed me off. This wasn't a time for jokes.) I was expecting a clean bill of health, but that's not what I got. She still had "borderline ventriculomegaly" and a possible "arachnoid cyst." This time we were too late to abort, and he returned with a card to go to Children's Medical Center for an MRI. I cried at the checkout desk scheduling the appointment. Before we made it to the car, I felt I was living a bad dream. My sadness quickly turned to anger. Anger because he had already sent us on a wild goose chase with her heart, and I wasn't going to go through it again. I was firing him! He didn't know what he was talking about! He was the WORST Dr. on the planet! But still, I went home, jumped on the Internet, learned more about the brain than I ever wanted to know. I found the worst case scenario, the best case scenario, and prayed.

After letting it sink in for a few days, I called my OB and asked to be referred to another perinatologist. My nurse was wonderful and encouraging. My Dr. sent me to the Dr. his wife went to. It was a longer drive, but worth it. Within a week, we had a second opinion from a well-regarded Dr. who had bad breath, but didn't piss me off. He reviewed everything, performed a long sonogram, and said everything looked fine...but she may have a club foot. In retrospect, a club foot would have been great! We breathed a sigh of relief and enjoyed the rest of our pregnancy. Kamden was excited about his baby sister. He drew pictures of her (and being the gifted and talented kid he is...drew her with a club foot in all of them.) Our angel never turned, so I was scheduled for a c-section.

Kendall was born on a Sunday morning. She didn't have a club foot. Emails and text messages were sent out stating everything was fine. She had an apgar score of 10. She latched on to breastfeed immediately. She was small 5 lb. 12 oz. Her head was also small. But she received a clean bill of health from everyone in the hospital. She even passed her eye exam!?!?!? We went home 2 days later with our bundle of joy...prepared for sleepless nights.

The next 2 months, I enjoyed my Maternity Leave. I recovered from my c-section, breast-feeding was going great, and I was focused on losing the 65 pounds I gained with my 6lb baby! She was the best baby. She had a few nights with crying fits, but all in all, she was so mellow. She slept a lot. Her eyes were always a bit shaky, but I must have asked the Dr. 100 times if that was normal! In the back of my mind, I knew it wasn't but I didn't want to think about it. Everything was going so great. Then one evening, we placed her down to go to sleep and she had a series of startles. She did it 3 times in a row. I knew this wasn't normal and called the Dr. the next day.

At that appointment I insisted he look at her eyes. She never made eye contact. Something was off. We left there and immediately went to a Pediatric Ophthalmologist. She was diagnosed with bilateral congenital cataracts. Surgery was scheduled for the next week for the left eye, then the following week for the right eye. I went home, jumped on the Internet and learned more about the eyes than I ever wanted to know. I found the best case scenario, the worst case scenario, and prayed.




She recovered from her surgeries was fitted for glasses weeks later, but still wasn't tracking. We thought there may still be something wrong with her vision even though during her examination under anesthesia they said her optic nerve was fine and everything else was intact. She wasn't rolling or reaching, but we blamed that on her vision! We started ECI services with Vision Instruction and Orientation and Mobility through our school district. We also added PT since she wasn't really moving.

She went for a routine evaluation at our pediatrician's office. Her head circumference was small, but was growing along the curve. They were a bit concerned. We mentioned a shaking of her foot on occasion and absent stares and head drops she was exhibiting. Soon after we left with a referral to a Neurologist and the label Microcephaly. We scheduled an EEG and an MRI. We also had the EEG followed by an appointment with the Neurologist. Her EEG was abnormal, he said she had high tone, and wanted to have a 24 hour video EEG done the following week. Of course I went home jumped on the Internet, researched everything I could about abnormal EEG's, abnormal tone, seizures, and you guessed it. I knew everything there was to know about Cerebral Palsy. I found the best case scenario, worst case scenario, and prayed!!!



At the hospital following her video EEG, we were told she did not have seizures, but they were going to go ahead and move the MRI appointment for the next morning since we were already there. She got general anesthesia for the third time in her short 5 months of life. When the results were in, they escorted us back to our room. We knew something was up when the train of Dr.'s walked us to the viewing room. The Dr. on call told us she had a large cyst in her brain, possibly on 2 sides, and we should start therapy and familiarize ourselves with the term Cerebral Palsy (ha! I already had!) We went home thinking a left sided weakness was the end of the world. Our next neurologist appointment wasn't for another 5 months. That wouldn't do, so I called the nurse. I explained that we didn't understand and the 5 minutes the Dr. on call spent with us wasn't going to hack it. She told me Kendall had damage all over her brain. I cried on the phone with her and she was able to move our appointment up to the next week.

At that appointment we were told Kendall had a bilateral stroke on both sides of her brain. She had two Porencephalic Cysts that were compatible with a hypoxic/ischemic brain injury. She would never be normal. She wouldn't walk, see, or talk. She would be "mentally retarted." We cried with the Dr. and went home.

The weeks following I did a lot of research on plasticity of the brain. I also asked a lot of questions about why this happened. I found incredible support and information on Yahoo message boards (my list of them got so extensive, I finally had to unsubscribe!) I learned about seizures through my Microcephaly group. Kendall continued the next few months with the "startles" that to me resembled videos of Infantile Spasms I had seen. Two more video EEG's finally diagnosed her with Infantile Spasms. That is where our current search for the right seizure medication began.

A group I found called the "Pediatric Stroke Network" helped me discover Kendall's possible cause of her stroke in utero. Apparently she has the Factor V Leiden Mutation, two copies of the MTHFR gene, and her Homocystene levels are high. These are inherited from both Justin and I. I have tested positive for the Factor V, and Justin and I both have MTHFR. We have decided not to have my son tested in fear that it would be a pre-existing condition that would interfere with him obtaining life insurance in the future. We are all starting on an aspirin a day. And we will make sure we tell Dr.'s in the future if we have any surgeries or increased risk of blood clots. In a weird way, finding out a possible reason for Kendall's stroke has helped me move forward. I don't research causes on the Internet anymore. I mainly focus on therapy and equipment and how others with similar diagnosis cope day to day.

So that's it. The "beginning of our matter." We are blessed with a beautifully unique little girl,a true fighter, with a smile that lights up a room, a laugh that lifts your spirits on the toughest of days, and a whole new outlook on life.



Thank you Kendall. We know you are going to surprise everyone with what you are able to overcome!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

When I orignally wrote this... I was praying I wouldn't have to update...like ever. Unfortuately for us, 2 weeks ago on (August 24th 2009 at 16 months old) Kendall had really high blood sugars and was admitted to the hospital, only to be diagnosed with Type 1 Diabetes. (the auto-immune flavor) Oddly enough this result was a relief for us because it meant she didn't have Mitochondrial Disease...

Currently her blood sugars are evening out, and seizures remain semi-controlled on the Ketogenic Diet. She failed Topamax, Vigabatrin, and Keppra so the reduced seizures are welcomed, even though it has complicated the Diabetes Treatment! Our Endocrine and Neurology teams at Cook Childrens are working together to provide the best treatment for Kendall. She now smiles and laughs, rolls, and reaches, and is days away (I believe) from sitting on her own! Hard work and perserverence will pay off. We are blessed.



Read more about Kendall on her blog Kendall's Hope.

Fun Creations to Help Daniel

I'd like to share some fun creations brought to you by Daniel's mom, Melanie, of Better Than Normal....

Better Than Normal is a a very informative blog on dealing with the issues of Infantile Spasms (a.k.a. West Syndrome), Bilateral Perisylvian Polymicrogyria (a.k.a. Congenital Bilateral Perisylvian Syndrome), Cerebral Palsy, and dealing emotionally and physically with a child with special needs and his family members.



Melanie has developed some fun creations that she sells and uses the proceeds to help Daniel....

First up are the felt crowns. How fun are these for a birthday party!?!?! She has them available in every color, or can customize them how you'd like....





There are also fun superhero capes, birthday banners and t-shirts....



You don't want to miss out on the fun! Be sure to check out Better Than Normal!

Marissa's Bunny

Marissa's Bunny is an Infantile Spasms Awareness Blog. For those of you who know Chloe's story, you can understand why this is a subject very close to my heart. To follow is Marissa's story written by her amazing dad, Mike.

My beautiful Marissa was born on November 8th, 2007. Three months passed mostly uneventfully, but on the afternoon of Valentine’s Day we were watching the Muppets Tonight with Prince as the guest star in preparation for her nap.


She made this odd jerking motion. Then again. Then ten more times. I started to freak out about it and called my wife at work, called anybody I could try to talk to. Nobody answered, everybody was busy with life’s mundane tasks. Frantically, with the teary baby still in my arms, I turned to Google, and researched epilepsy quickly, but didn’t find anything relevant or that looked like what she was doing. I was relieved- but only for the moment.


We brought Marissa to Inova Fairfax hospital. She was a trooper through it all, dealing with poke after poke for blood draws and many painful failed attempts at an IV insertion. Hard for her to deal with, for sure, but miserable for her helpless father to watch. For eight hours, she patiently dealt with it all, the pokes, the prods, the investigations. It all changed just before midnight.


At about 11:30 that night, she seized again. This time, more seizures in the cluster, and more spasmodic. I could barely see through the wall of nursing staff. Discussions were had about immediate anticonvulsant medication, and how it wouldn’t help. About six minutes later, she stopped this seize. The staff was about as relieved as I was, but we still didn’t have a diagnosis. Watching her seize and know there’s nothing in this green Earth you can do about it tears you up.


The next day, after an overnight with a video EEG machine and an aborted attempt at a MRI (which required fasting, which you can’t logically explain to an infant!), we got a diagnosis. Marissa was diagnosed with infantile spasms. My wife worked in a pediatrician’s office for 14 years, and read just about every pregnancy book she could find, and she had never heard of this before. The same pediatrician who my wife worked with has maybe had one other case of this in thirty years of practice.


My sister in law relieved us at the hospital for a little while so we could go home, shower, feed the cats, and do the things in life that you forget you do every day, but they need to be done anyhow. In that rushed home stop, we got a better hold on the diagnosis and what it entailed- the severity of it stopped us in our tracks.


It’s been four months since the diagnosis at this point. We’ve been through a generic steroid treatment which did nothing, another hospitalization, daily intramuscular injection Acthar gel steroid therapy which ultimately did nothing, and three other anti-seizure medications with varying degrees of rashiness, baby rage, irritability, and success.

Marissa’s infantile spasm seizures aren’t the same as a “stereotypical” grand mal seizure- they come in clusters, with each individual seizure lasting a couple of seconds. She can have as few as three or as many as fifty nine seizures per cluster. The whole event is normally over in ten minutes or less, but have gone as long as fifteen minutes.


Infantile Spasms is either a symptom of something larger, or it can be the disease itself. So far, Marissa’s only got infantile spasms as a disease and not as a symptom, but we’re not out of the woods yet. Around two years of age, with what’s called cryptogenic infantile spasms, they’ll either resolve themselves, or evolve into something nastier, and only time will tell on that...


Fairfax is a stuffed bunny I bought for Marissa during her first hospital stay. She had it with her in her hospital crib which looked like nothing more than baby jail during the day, and I clutched onto it for dear life at night. She had so many wires, cables, gooey electrodes, and other lines attached to her at any given time, I couldn’t just scoop her up and cuddle on her- the bunny was our lifeline to each other.


Fairfax is Marissa’s bunny - a shared name for a family of bunnies that are traveling the world trying to spread awareness of her disease that has no reliable cure and is hard to relieve.

Be sure to visit the Marissa's Bunny blog to find out how you can get a Fairfax of your own to help spread awareness about this unfortunate disorder.

Chloe - Nana's Perspective

Chloe.... with just a few of the people who love her.

Having a baby is the most beautiful thing this world has to offer. First there is a suspision "could I be?" Sharing your theory with your husband, the test, it's positive. A thrill comes over you like you have never before experienced. That's it the two of you have a most blessed secret. There's the big announcement, everyone goes crazy, grandma's, grandpa's, brothers, sisters, aunt's, uncle's, cousins, friends. You watch your tummy grow, feel another life inside you kicking, rolling. Such anticipation and celebration in your life. Things could never be better.

I'm a grandmother now and when my children come to me with their exciting news it never can get old. We're like any other family in this world never believing any of our beautiful babies would have anything wrong with them, that happens to other people. Of course we are not oblivous, like any other family we have the momentary thought that something may go wrong but we push it away and pray that our children will be born healthy and strong.

Our little Chloe wasn't, healthy and strong I mean. At first things seemed as normal as things can. A beautiful delivery. We took a million pictures. I took a picture of her minutes old with her hands held close to her face, fingers interlaced just as if she was posing for us. The funny thing at the time was her wide open eyes were as crossed eyed as they could possibly get. Everyone wanted a copy of that particular picture. Recently I asked Chloe's mother my daughter in law if I could delete that photo from my camera.I hate it now because to me if I developed that picture it's as if we would be cruely mocking our beautiful little girl, and beautiful she is. A little doll with big blue eyes little red cheeks, rose petal lips and a strawberry blond mowhawk on the top of her head. Tara (my daughter in law) agreed the picture needed to go "delete it"she said.

In the beginning months of Chloe's life I noticed she would never focus on me when I spoke to her, she would either have a blank stare or her eyes would be darting in all sorts of directions. I knew she would hear me because her hearing tests at the hospital right after her delivery were normal. However when any of us kissed her she would smile so big, so wide it was adorable and still is.Chloe was extremely sensative to movement and touch, she would be startled easily and cry for hours. Trying to comfort her was nearly impossible. When she was about 4 weeks old she was laying belly down on top of my husband's belly.Face down barely atempting to hold up her little head. I had already noticed she always needed support underneath the back of her head to hold it up at all. It worried me until I was sick. This particular afternoon laying on Papa I looked over at my husband and said "There is something wrong with this baby." He turned toward me and sadly said "I know."

It's been over a year ince I wrote the four paragraph's above. Tara and my son Oby (Chloe's parents) asked me to remove what I had written because it was too sad. Tara told me our blog was to give people in our situation hope, not depress them. I believe people need to read those four paragraphs so they can know they are not alone in feeling like the world is caving in around them when they realize "something is wrong with my baby." One day after being in the emergency room, yet again listening to endless medical jargan explaining the possibilities we were facing I felt I had brain overload. On the way home from the hospital I pulled my car to the curb and sobbed for a good twenty minutes. I would have stayed longer but I had a house full of relatives from out of town waiting for me at home. We were having a family party of all things. I couldn't let them see me in that sort of state. Nor, could I ever let Oby and Tara see it. Oby's my baby and I nedded to be somewhat put together for him, but my heart was breaking. I couldn't fix it. This was the first time in my life I asked God "Why?" Something I thought I would never do because I believed I could always take on any adversity I was dealt, but this was being delt to my son, his wife and my beautiful baby grandaughter. As I mentioned earlier that was over a year ago. The road has not been smooth for Tara and Oby, but they have taken the challenge of having a special needs child straight on; and in the process we have all realized what a treasure we have been blessed with. Tara quit working. They sold their home. Oby works and goes to school. They have moved into a one bedroom basement apartment for now so Tara can be with Chloe. I tell you this because material possesions and a great career don't mean much right now. Chloe needs her mom and her mom needs her. I am proud of the decisions they have made. I know they have been hard ones to make. Tara has learned all about early intervention physical therapy, music therapy, swing therapy, horse riding therapy and swimming therapy. Who knew? Well Tara does and she can help anyone else learn about these thing too. That is the point of this blog. Chloe has never reached the mile stones we look for such as rolling over, sitting up or walking yet. I like to think she has other skills such has drawing every person in the room directly to her with her very presence. Her smile tells us how much we are loved. The twinkle in her eyes tells us we better watch out because when her little body can she will be into all sorts of mischief. Chloe wants to persevere and she will, she has forever changed my perspective on life. I don't ask God "Why?" anymore. I kneel and tell him thank you.

Chloe - The Kid Behind Kidz

Miss Chloe Gayle is our sweet almost-4-year-old who has Cerebral Palsy and West Syndrome. She is the inspiration behind this blog as well as our family blog, endless jubilee. Hers is a life of large hurdles, tiny triumphs, true miracles, and great love. We take joy in the profound privilege it is to be her parents and have come to realize that she helps and teaches us much more than we could ever reciprocate.

This is her story.....

When I found out I was pregnant, although the timing was unexpected, I was thrilled! Oby and I had only been married a few months, but definitely wanted to have children. We found out it was a girl! A girl meant bows, dresses, tights, headbands, pink, yellow.... sugar, spice and everything nice. We named her Chloe Gayle. Chloe from the Bible and Gayle, which is my mother's middle name. I always pictured her with big blue eyes, snowy skin, and long wavy strawberry blonde hair. My girl. I was worried she would like her daddy more than me, he's just more of a kid at heart. But I knew she and I would be best friends who would laugh in sync at everything. I was so anxious to see her, hold her, and watch her grow into a lovely lady. I didn't have specific plans for her, I just wanted to teach her to appreciate her unique beauty, and to find her niche - whatever would make her happy. I just wanted her to be happy, no matter what.

They placed her in my arms and I called her my 'little bundle.' She was so soft and her eyes were wide open. She had my fingers. I had never seen anything more beautiful.

Her days were not easy from the beginning. She looked absolutely perfect, but she seemed to be in constant pain and misery. She was always crying, screaming, inconsolable, and hysterical. Instinctively I felt something was truly wrong, but I didn't want to be paranoid. Colic, they said. There were plenty of good-hearted people with a lot of advice. 'Have you tried wrapping her tight in a blanket?' 'You need to try the football hold. That always worked for me.' 'Just give it six months, it's just a stage.' No, NO. This was not what I had planned. We were just going to giggle and try on different pink outfits all day, but not this, not the constant crying. Her big blue eyes were always red and her snow white skin always wet, a mirror image of her mother, except I had black mascara running down my pale skin. I tried everything I could think of to soothe her. Everything.

I have only a few faint memories of the first few months of her life.... of her crying and me feeling disappointed that my dreams of daffodil days filled with giggles and pink dresses were shattered. And I'm sure little Chloe wondered what she'd gotten herself into!

I remember having to be strong in front of the doctors. I had to keep my composure so they would take me seriously, and listen to what I was saying. Something was wrong with my baby. I wanted them figure it out and fix it. It got so bad, after all the different types of formula didn't help, and I couldn't get in to see a specialist for four months, I went straight to the ER. The doctors didn't mean to be, but they were condescending as they asked WHY I brought my infant in to the Emergency Room when her only real symptom was crying.... It didn't seem to be any sort of legitimate emergency to them.

Finally, I talked to a doctor who realized I was not leaving until I got help for my baby and some answers. He said they would run all the tests, assuring me that he was certain the results would help me realize there was nothing truly wrong, and that it was probably just colic. We did the tests. My husband had to hold her because I was too physically and emotionally exhausted to hold her down while they poked and prodded her, unable to console her cries.

Then we waited and waited. And waited. I started wondering if the delay was because they found something wrong. But as we sat in the cold ER room trying to get comfortable in the hard chairs or the papered bed, I felt an incredible sense of peace come over me. Part of that peace came because Chloe had cried so hard she had exhausted herself into a nap. But there was something much more powerful than I had ever encountered in that room. There were angels wrapping me in a blanket of peace. I have no question of that. I had glimpses of heaven as I waited. I was so comforted by the feeling I had in that room, I thought it meant that nothing was wrong.

But then the angels in white were replaced with a man in white, with an MD tag pinned to his lapel, and terribly unfashionable spectacles. It was the doctor. The feeling of comfort was immediately gone, and I just knew....

It was bad news.

They showed us the Brain CT Scan. I don't think he knew what it was, so needless to say, he wasn't able to explain it to us very well. I was strong for awhile. No tears, just trying to recall the latin I learned in my high school Medical Terminology class so I could translate what he was saying into something I could understand.

When we left that night all I knew for sure was that my baby had a white spot on her brain, the doctor was concerned, and there would be more tests. The nurses and doctors who had been condescending were suddenly empathetic. Everything seemed uncertain and I knew it wasn't going to be easy, but there was a strange comfort in knowing we were finally going to be taken seriously and get the help I knew Chloe needed.

After many tests, Chloe was given multiple diagnoses, the main one being encephalopathy. The brain MRI showed multiple anomoles. She has a thin corpus collosum, periventricular cysts, and calcification in the right frontal lobe. The EEG showed extremely abnormal electrical activity; in other words, lots of seizures.

We were told the cause of these problems was most likely a stroke in utero or infection in utero. We have since ruled out the stroke in utero, so she likely had an infection of some sort. My personal belief has always been that the viral infections I experienced during my pregnancy (Ecol i and food poisoning) affected her development, but of course we'll never know for sure.

We have been to many doctors, trying to get multiple opinions to ensure that she was getting the best care. I wanted to find a doctor who could fix her, but I've come to learn that we don't need to fix her -- if anything, she's helping to fix us.

"Wait and see," seemed to be the only advice we were ever given. I used to resent that suggestion. I wanted firm answers. But I've come to realize that as we do wait through the days, months and years, Chloe helps us truly see who she is -- which has nothing to do with what she can do or how her body works. It's a blessing to see a person in this light, outside of how society determines a person's value. There is so much more to all of us than what we can do or cannot do. This has been one of Chloe's greatest lessons to me.

I wouldn't say that time has healed the pain. Rather, I would say that with time has come wisdom. But I vividly remember in the first days and weeks of understanding that I was being thrown into the role of special needs mother, that it was hard just to breathe. Fortunately, there were moments of spiritual clarity and insight from others that always got me through.

I remember one day in particular, driving home from Primary Children's Medical Center in Salt Lake City after receiving more bad news. Chloe was screaming in her car seat as usual and I just didn't know if I could do it. Then, as silly as it may seem, I saw this three-legged dog on the sidewalk hobbling along with its owner, and the song 'So Small' came on the radio. I immediately went from self-pity to extreme gratitude. There was just something about the bounce in that dog's step, and the lyrics to that song.... I realized that this "trial" would not define me. I knew that how I reacted would create the quality of life and happiness I would experience. I realized how blessed I was to be Chloe's mom and how incredibly strong she was. I knew she was a survivor and I was determined to learn some attributes from her. I knew how much Oby and I loved her and the love we felt from her really was all that mattered, and the rest was just not that important in the grand scheme of things. From that moment on, I took more responsibility for my feelings and actions. I knew it was going to be up to me to choose love over everything else.

Thank goodness for those moments of clarity and life lessons to get me through the tough times. Like when we faced the next big hurdle....

When Chloe was five months old, Oby asked me to come where he was with Chloe. "Have you seen this?" I gulped. I didn't want to get caught in my denial. "Yes, I've noticed it before, but I'm sure it's fine. She has an appointment with the neurologist in two weeks. I'll talk to him about it then." What was happening was her entire body would jerk up, as if she were doing an abdominal crunch. Her fingers would touch her toes. The jerking motions would occur in clusters and the clusters would happen many times throughout the day. This went on for a week or so, but when she started to cry in between the 'jerks' we decided to take her into the hospital. We were told they were 'infantile spasms.' Spasms, that didn't sound like a big deal. They prescribed some medications, including a 6-8 week trial of a steroid to help the spasms. It didn't seem like a big deal.

Videos of Chloe's Infantile Spasms

A Google search quickly made me realize that Infantile Spasms, otherwise known as West Syndrome, is a very BIG deal. I read that Infantile Spasms cause irreparable brain damage each time they occur. This brain damage causes statistics like these: 90% of babies with I.S. end up with severe mental retardation, a 60% higher mortality rate before the age of 10, and would usually lose the ability to smile and interact. The medication used to treat it, ACTH, cost $20,000 a vial and it took awhile for the insurance to approve the payment. This form of treatment had a relatively low success rate, but the next form of treatment was invasive brain surgery, so it was worth a try. A home care nurse came to teach Oby and I how to give her the daily shot. I thought it would break my heart to stick her with a needle, but it was actually painless for all of us. It didn't seem to bother her at all, so it didn't bother me! The main thing that bothered me were those statistics. I have never prayed so hard in my life. I simply could not imagine a world without Chloe in it or a world without her smile to brighten my days.

After six weeks, the EEG was normal.

Excuse me, did I hear that right? Normal?

Normal. She had not just improved, but had essentially been cured. All I had been hearing was about her many abnormalities, so it seemed nothing shy of a miracle to hear that word. Normal.

Prayer works. Believe me.

She has also been diagnosed with bilateral exotropia, a misalignment of both eyes. I think she is beautiful, and has the most perfect and beautiful eyes in the world. But apparently, they put more merit in what the Opthalmologist has to say about that than what her mother thinks. She had corrective surgery when she was 7-months-old, although she does still have a slight misalignment in her eyes. They say exotropia is not uncommon and is unrelated to her neurologic issues. However, she also has Nystagmus, an involuntary movement of the eyes, which is related to the pathology of her brain. Her nystgamus was minimal enough that we chose not to treat it. However, after an alternative form of treatment, her nystagmus went away. If you want more information on the alternative treatment, just ask.

Chloe has been involved in many forms of treatment including intervention services, physical therapy, occupational therapy, speech therapy, hippotherapy, swimming therapy and music therapy. She uses a lot of special needs equipment, such as her wheelchair, DAFO's, a stander, Benik splints on both hands, and other assistance devices. She is non-verbal, so we've been training her on touch screens with games so she can one day use a speech device (think Steven Hawking). We've also tried many forms of alternative therapy, but have found Anat Baniel Method (ABM) to have the greatest benefit - if only insurance would recognize it as the valid form of treatment as it is.... or if only we were independently wealthy. Our hope is that we can one day afford ABM on a regular basis.

Chloe is currently in a head-start special needs preschool. Sending her to school was a huge step and a scary step, but it has been a wonderful thing for Chloe! She is such a social butterfly and this is a wonderful place for her to make friends, learn, and get excellent care and therapy.

There have been many times, quiet moments with Chloe, when I feel those angels surrounding us again, holding my hand, bringing peace amid chaos, encouraging us to believe in miracles and to never, EVER give up!

I have come to that normal is a relative term. I now recognize that although this journey was unexpected, it is wonderful. Chloe is a blessing to everyone who knows her. Chloe has every reason to be sad, but she is happy, so there's no reason for us to be sad for her -- and certainly NO reason to be sad for ourselves.

She teaches us to enjoy the journey, be grateful for every moment, believe in the impossible, and keep things in perspective. I am so blessed to be her mother. Through her big baby blues she communicates perserverence, determination, hope, love, and just everything good!

Although we have had some negative experiences with ignorant people, most of our experiences involving Chloe and her special needs have been very positive. Probably the most common thing I hear is, "I don't know how you do it." I think so many see this life as something people must endure, but it is so misunderstood. This life is such a blessing and I wouldn't change it if I could.

Chloe has prodded me to take positive action in many ways. Two big parts of my life that were inspired by Chloe. The kidz blog is a place for special needs parents to connect and collaborate. It has been a source of strength and friendship and a wonderful blessing in my life. We also started a non-profit organization called The No Child Left Out Project. We are planning to build a playground that is accessible to people of all abilities in our city. Our hope is to create a place where people with physical limitations are not only accepted or included, but celebrated! We have fund-raised quite a bit of money, but still have a long way to go.

This song was written especially for Chloe by Songs of Love. It explains so much of her sweet, fun and unique personality.

You're amazing just the way you are

Zip-a-dee-doo-dah!
Never, ever, ever give up
Our little girl with big dreams
Celebrating little things
Chloe Gayle, remember - we love you.
We love you!

Chloe - Dad's Perspective

Being a father has always been a dream of mine, to watch my children grow and be happy. From the day we were given bad news that Chloe might not sit, walk or be able to do all the things a parent wants their child to be able to do, I have struggled in dealing with that. But as I have seen her struggle, I realize that she needs me to be strong for her. I have come to understand that it's not what I want for her that is important, but that I will always be there for her and support her. I want her to chase big dreams, to give her any chance to do what she wants in this life. No matter what, she will always be my baby girl. Love you Chloe. -Dad