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.

Team Kellan

Meet Kellan:

Isn't he cute?! His parents are helping raise awareness and fighting for a cure for Angelman Syndrome. Please support them in their walk if you can. Information can be found here.

Praying for Progress

By Gail of the blog: Us, Dezh and Dravet Syndrome.

Nadezhda was born on May 19, 2007 after a fairly normal pregnancy, although she was 11 days early. She was 6 lbs 10 oz. She had a high fever of 103 F because I, her mom, had a fever of 104 F. Immediately she had a struggle to breathe and her blood-oxygen saturation level was much lower than healthy. But after 2 hrs she was perfect and healthy without any issues.



On the second day of her life she got jaundice and we used bili-lights to bring down her bilirubin level. At 4 months she started wearing a helmet to reshape her head. She wore this for 5 months total. We also started to notice delays at about 4 months. She couldn’t hold up her head very well on her own. She didn’t sit up on her own until after 10 months. She didn’t crawl until 1 year and didn’t walk until 22 months or so.



Her first seizure was on February 6, 2008. She had a slight fever due to getting her first tooth. This seizure was over an hour long. They gave her so many drugs to try to stop the seizure in the hospital that she had to be intubated. Every possible test was run with no reason for her to have a seizure. We were life-flighted to Primary Children’s Hospital where we stayed in the neuro unit for 4 days. We were sent home with instructions to use diastat if another seizure was to occur but they felt it was simply a febrile seizure and it was unlikely to happen again.

Two months later, on the last day of our first family vacation, we awoke to her having another seizure. I thought this one was caused because I put her in pajamas that were too warm for the warm weather. We were hospitalized in the same hospital for just 2 days this time. They sent us home with her on Phenobarbital for seizure control and a new rescue medication.

After this we had about 1 seizure per month that would land us in the ER and often require an overnight stay in the hospital. These seizures were usually caused by an illness with a fever. She seemed to have a very low febrile seizure threshold.

Eventually seizures started to happen without a fever. Also different types of seizures, besides the tonic-clonic and myoclonic, started to show up. We saw partial and complex partial seizures, which were often on just half of her body, or half or all of her face. We also saw these in just her eyes. She also had absence seizures, though these were harder for us to be sure whether they were seizures or not.

Our wonderful doctors at Primarys did some tests to figure out the cause of the seizures. When Nadezhda was about 1½ years old we finally had a "working diagnosis" of Alternating Hemiplegia of Childhood. This could only be truly diagnosed by the process of elimination, which turned life into a waiting game.



When she was just over 2 years old we moved to Kentucky and took her into the neurologists at the University of Kentucky. Our first doctors were great and willing to do many tests but wanted to start over to be sure no simple explanation for the seizures had been missed. However, we got a call from Nadezhda’s previous neurologist. She told us that she had just attended an epilepsy conference in Ohio and had learned about a disease called Dravet Syndrome that she thought fit Nadezhda’s symptoms very closely. She told us that if Nadezhda was still her patient she would pursue this diagnosis and suggested we ask our doctor to do the genetic test to find if this was her disease.

So we did ask our new neurologists to perform this test but they didn’t think it was likely to be Dravet Syndrome and that it didn’t fit her symptoms well enough to pursue, so they opted to start from the beginning and redo many test. Curtis, Nadezhda’s dad, was not willing to take this extra time and the step back to look at all the same tests again. He asked again with the same response. Somehow after our second appointment we got switched to a new neurologist, Dr. Khan.

At our first appointment with Dr. Khan, Curtis asked if he would do the test on Nadezhda to see if she had Dravet Syndrome. He thought for a moment and agreed that her symptoms were enough like Dravet Syndrome symptoms that it was worth doing the test. He made the appointment and we got the test done.

Just over 2 weeks later we got a call from Dr. Khan, telling us that her test was positive for Dravet Syndrome. We had another appointment with Dr. Khan where he explained Dravet Syndrome to us. He also told us that he had had 7 other Dravet Syndrome patients up north where he previously worked. He put Nadezhda on Depakote, which proved to be helpful. But soon after we added Clobazam, a med from Canada, which was also very helpful. She has also tried Topamax and Keppra but has been weaned off both these. We are starting to wean her off of the Phenobarbital now. It will take several months to finish with the Phenobarbital wean but we think it will be beneficial for her.




Now, rather than 30 minute seizures to 1 hour 45 minute seizures, they are 1 – 3 minutes long. She still has all types of seizures but they are much shorter and still only occur a few times each month. This is a great improvement obviously. She continues to progress physically and mentally although progression is slow. She has never digressed, thankfully, and we pray that her progression continues.

Timelines

Timelines

We all live by them....

We hurry to get our dishes done. We hurry to pay our bills on time. We hurry to put our laundry away.

We scurry from one place in time to another each and every day.

Time flies whether you are having fun or not.

When you are the parent to a special needs child you still live by a time line though the scurry is often different.

We hurry from one appointment to another. We hurry learning one diagnosis and then another. We hurry stretching one muscle and then stretching another.

But still, we hurry.

This week, our hurrying around stopped.

Under the worst of circumstances, a conversation brought me to my knees, and all of the world fell on my shoulders. The dishes could wait. The laundry didn't matter. The appointments weren't important at that moment.

As most of you know, the seizure monster has made his existence very known in our Matthew's life. He doesn't seem to want to go anywhere anytime soon. In fact, over the past week we have had two seizures that caused Matthew to turn blue.

Matthew is not a prime candidate for a lot of cutting edge treatments currently available. The ever popular brain surgery is not an option for us. Matthew's seizure monster takes up residency all over his brain. Removing the part of his brain responsible for seizures would leave nothing. The VNS is a possibly, however, it is a scary surgery. Matthew doesn't do well with sedation. A day surgery can often turn into quite a big deal for us. We are not sure a doctor would consider us for this. We are not sure we would consider this for Matthew. There are just too many risks.

Currently, there are only a few medications left we haven't tried. We are just a month shy from seeing a new neurologist who hopefully will bring a new plan to our sweet boy.

But on to the wretched conversation....we have one doctor we trust. ONE! He is our pediatrician. He listens. He cares. He does more than what he gets paid for. He answers every silly question I ask (and believe me I ask a lot.) He is simply amazing! I had to call for referrals. Per the usual he asked about Matthew's seizures. I filled him in on the progression since we had last seen him. I explained how Matthew had stopped breathing twice in one day.

He politely asked me about my CPR and First Aid. Luckily, it is just now outdated and in the process of getting redone. We discussed increasing one medication to see if we could decrease some seizures.

Then......the sky fell.

He said Matthew's prognosis was not good. The seizures were increasing too quickly, and he was not a good candidate for other treatments (see above.) We talked about what this meant. He told me we should be prepared and should remain guarded regarding Matthew and his seizures.

Take a moment and let that sink in.

How do you stay guarded regarding you child?



You simply don't. You cry. A LOT!

You lean on friends. You hold you children and pray for wisdom. You cry some more. You lose sleep. You look awful. You think awful things.


And then you pick yourself up by your boot straps and you go on.

Because around here....no one gets to put a timeline on our child.

Thank goodness, we have someone much bigger in our corner. Our God is bigger than doctors and diagnoses. He knows what is going to happen. I have faith in His plan.

I am terrified of every single day now. Matthew slept all night long the night after I spoke with the doctor. He hadn't slept all night in weeks. At 6:30 in the morning, my eyes popped open recognizing there was not a cuddly little boy in my bed and my heart started to pound. I couldn't breathe.

Believe me, you don't want to be my friend or know me right now. But we will get through this.

We putting a positive spin on this. We are creating a "Matthew's Most Awesomest Things To Do" list. Anything and everything we feel he needs to experience will go on this list, and one by one we will start crossing them off. We are not doing this because we feel the doctors may be right.

We are doing this because in light of what they said we have come to realize that no day is to be taken for granted. Experiences are too important to be put off because of dishes or laundry.


Our children are too important for timelines.



So I ask you, dear blogger friends, tonight hold you children a little closer, stay up a little later, sing an extra song, and don't take another day for granted.

Believe me, we will not!

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.

Angels 4 Epilepsy

by Judy of Youthful Tips.


In June 2008, both my daughters, then ages 1 and 5, were diagnosed within two weeks of each other with an unknown immune/pulmonary issue and benign rolandic epilepsy BRE). Both children continued to have hospitalizations, testing and numerous doctor appointments. To date, both girls take two daily medications to help with their conditions. My youngest nearly died and was intubated for 10 days in November of 08. She's more stable now thankfully!

Jamie never had any seizure issues prior to the one morning in June of 2008. Out of the blue, she was lying still and almost asleep when what appeared to be a right side stroke was hitting her. After a hospitalization, she was diagnosed with BRE which is a type of epilepsy that doctors do not know what caused seizures and most outgrow it after puberty. We had to keep trying different doses and different medications until we finally found Keppra worked to stop the seizures. Keppra, twice a day, is our savior and luckily, to date, she has not required her rescue medication as she's not suffered a grand mal. She still has developmental delays and had to repeat kindergarten. The medication or condition has definitely impacted her ability to speak and focus but she prevails through her art, her writing and desire to help others.

Jamie was recently diagnosed with Pediatric Migraines and Pediatric Insomnia which added to her daily regiment of medidations.



During Jamie's sleep study to determine a follow up of her seizures, a couple of groups of people provided support to the children at the local children's hospital's epilepsy ward. Their act of kindness provided us with a more enjoyable couple of days of playing games, playing puppets and talking about the fun things we were able to do. She's a very creative person and it was just after this stay, she wrote her first book, The Gorilla on the Swing, which was self-published.

Available at Create Space
Proceeds donated to the Angles4Epilepsy program

Jamie wanted to take her work one step further and starting this Easter, she will be delivering tote bags full of toys, snacks and other goodies that kind people have donated via her website, angels4epilepsy. Her wish is to do this twice a year, if not more, to help other children with chronic conditions who are in the hospital.

If you would like to contribute to Jamie's mission, please send an e-mail to angels4epilepsy@yahoo.com.

Fearfully and Wonderfully Made

Psalm 139: 13-18
For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you…Your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.


In the fall of 2006 we found out that we were expecting our third child. The pregnancy went pretty well, despite extreme morning sickness. The sonogram looked great and we found out that we were having our third boy!

On April 17, our third son, Brayden, joined our family. The day after he was born, concerns about the size of his head were expressed. His head was extremely small; it did not make it on the growth chart. Tests were done for exploration. He appeared to being doing well, we thought all of the tests were precautionary and everything was fine. Brayden had a head ultrasound and it revealed that he was missing part of his brain and had additional abnormalities. The ultrasound could not provide a clear picture and we were instructed to schedule a MRI to review his brain in further detail after he was three months of age. Thankfully Brayden was nursing well and he was able to come home with us.The next few months were filled with tests and specialists. All of his major organs needed to be checked to rule out additional complications. We saw just about all of his insides, all of which were functioning and doing well. The big test was the brain MRI. The MRI revealed that Brayden’s brain was missing parts and the rest was abnormal. Today we are still learning what all of this will mean for his life.



Brayden struggles with seizures and we try to regulate them with medication. He is severely visually impaired. Brayden has a G-J tube and is feed by j-tube (into his intestines) for about 20 hours a day. He struggles with chronic vomiting and we have been in and out of the hospital for it...alot. But at home we pump his stomach, by a big suction machine, several times a day for about 30 minutes. Developmentally he is close to a newborn. He cannot hold his head for more than a few seconds. He needs constant full support.

Brayden sees a list of doctors and specialists on a regular basis: neurologist, ophthalmologist, occupational therapist, physical therapist, feeding therapist, vision therapist.

One of the big questions is his condition, handicap, label, etc…Well, it all depends on which doctor we are seeing and what part of his body that particular doctor is looking at. Brayden has a lot of things going on and here is what we have figured out so far (don’t worry if you have no idea what the terms mean, you can google). We have learned that the doctors, therapists, and insurance use these fancy labels to get Brayden services, treatment or therapy but not one single term describes Brayden.

· To the neurologist: ACC, seizure disorder, cerebral dysgensis, microcephaly, pontocerebellar hypoplasia
· To the occupational and physical therapists: cerebral palsy, developmental delays, mixed muscle tone
· To the ophthalmologist and vision therapist: visual impairment, optic nerve hypoplasia
· To the GI doctor and feeding therapist: feeding difficulties, G-J tube, chronic vomiting

Brayden has a a lot going on and we are still trying to understand what all of this means. Thus my journey is understanding it all.

A list of Brayden's diagnosis:

Brain
Agenesis of the Corpus Collseum (ACC)
Microcephaly
Seizure disorder – partial complex seizures
Cerebral dysgensis
Pontocerebellar hypoplasia
Cerebral palsy
Nonambulatory

GI
G-tube, mickey button since April 2008
G-tube replaced with G-J tube Sept 2008
Delayed gastric emptying
Chronic vomiting
GE reflux

Eyes
Visual impairment
Optic nerve hypoplasia

Read more about Brayden and his mom, Carrie, on their blog.

Unexpected Lessons

a beautiful story about a beautiful girl named Oia Lee by her mother, Mo.


Better grab a coffee...


Rob and I were excited and full of anxiety once we found out we were having a baby. The pregnancy was planned and without complication. We decided right away that we would wait until “Peanut” was born to learn the baby’s gender. Finally on August 22, 2007, after nearly 41 weeks gestation, our daughter was born. We named her Oia Lee (pronounced E-ah). When our midwife flopped her on my belly immediately following delivery, we completely forgot the fact that we had no clue what this little being of ours was…a girl or a boy? I remember looking at this baby on my chest and feeling very surreal, almost numb. Gender was so unimportant. A curious nurse in the room blurted, “Well, what is it?” Rob blurted back “IT’S A GIRL!” but only after he lifted her leg not once but twice to confirm. (All along he had been secretly hoping for a girl.) Oia weighed 6lbs 3oz. She was slightly small for a full term baby but not completely out of the ordinary. Delivery was smooth and when I tell people that I enjoyed every minute of it they question my sanity but I truly did. She came out screaming and immediately latched on right away. Apgar scores were 8 and 9. She was perfect. We were sent home from the hospital two days later with smiles smeared across our faces.

Since babies spend the majority of their first few weeks of life asleep, we didn’t notice our first hallmark sign that something could be wrong. It was about two months later when we began noticing that Oia’s pupils were unevenly dilated. One appeared larger than the other and at times her eyes didn’t seem to be aligned together. Her left eye seemed to veer outward. At one of Oia’s well baby visits I remember the pediatrician asking me if I had ever noticed that Oia did not look at me with both eyes. I think I answered by saying something like “Yeah, but I just assumed that all new baby’s eyes were like that” and then she replied by saying that I was probably right. She said newborns have to ‘learn’ to control the muscles in their eyes and that we just needed to keep an eye on things. Done. Easy enough.

Another month came and went. No changes with her eyes. Sometimes her eyes crossed but mostly they strayed outward and seemed to work as two separate eyes, not as a pair. Our pediatrician referred us to a wonderful ophthalmologist to further assess this situation. I wasn’t sure what I thought or how I felt about this but I was glad to know that we would have answers soon and that surely this situation would have an easy fix. So, around 4 months of age, Oia was seen by Dr. W. We immediately fell in the love with this man. He was older in age, very experienced and compassionate. He made Rob and I feel as calm and as comfortable as possible. A big deal for new, now scared to death parents. Amazing as it is, he performed an intensive eye exam on our almost 4 month old and determined that she desperately needed glasses. He warned us they would be ‘thick’. Her visual diagnosis was intermittent esotropia. It felt like a blow at the time but I kept telling myself that if this was the worst of things we ever had to deal with then we could consider ourselves lucky. Glasses. Big deal.

I recall the day we went to the eyeglass shop to pick up her new glasses. I felt weak. Rob was much more excited than I was. Such a tiny, flawless face was going to be covered up by ‘thick’ glasses. I held her in my arms as I let her look over my left shoulder so that Rob and the optician could slide her new glasses on. She was most calm in my arms so this made since. She was still and patient. I couldn’t see what was going on behind me but a few seconds later I did hear the optician say, “There we go!” I pulled her from my shoulder and brought her in front of my face to take a look myself. And in that very moment, she looked at me (probably clearly for the very first time) and smiled the biggest smile I had seen yet. I lost it. That smile spoke to me. It said “Mommy, I need these glasses. It’s going to be alright.”



My very first unexpected lesson; find the silver lining. There is one in every situation. My daughter has glasses because she CAN see, not because she can’t see.

I still had a love-hate relationship with those glasses for some time. She did look cute as pie in them and after all they were pink, but still, they were glasses. I was nursing at the time and they seemed to always be in the way. I enjoyed nursing and the fact that something was interfering with this quality time annoyed me. I ended up just taking them off for feedings.

As Oia began to see her new world, she wanted to start exploring it. She immediately began reaching for toys and faces in front of her. This was so reassuring to witness Oia come alive as she seemed more alert and happy now with her new ‘view’. But soon after, a new issue, another hallmark sign that something may be wrong began to surface. Oia was only reaching with her left arm. She seemed to rarely, if ever, use her right arm at all. It remained close to her body and loosely fisted. I didn’t hesitate to call our pediatrician. She had no answers for us (though she probably had an idea) so again we were referred to another doctor; a neurologist. Our appointment was scheduled in a timely manner and we were nervous, to say the least, about the appointment but again, I was sure this was a problem with another easy fix. I remember sitting in the waiting room of the neurology department seeing all of the ‘sick’ kids. The ‘special’ kids. Were we in the right place? Our daughter was fine…it was just her arm that didn’t work, right?

Meeting the neurologist and the nurse practitioner for the first time was a weird experience. The room was cold and uninviting. I felt in my heart at that moment that the outcome of this visit wasn’t going to be a good one. Oia was examined first by the nurse practitioner. She asked a few questions and we answered them the best we could. The NP left and then the neurologist came in next to examine Oia. Both examinations were brief. During the examination with the neurologist we mentioned that Oia had a period of what seemed to be an exaggerated startle reflex. The ‘startles’ came randomly and without cause. The neurologist left and said he’d return in a moment. Waiting on someone to return to our room was dreadful. Time seemed to stand still. Once the neurologist finally returned, he laid it on us. He handed us a ton of bricks. He flipped our world upside down. I guess he thought there was no gentle way to deliver the news. As best as I can remember, this is what he said:

“There are 3 things you need to familiarize yourselves with. 1. Developmentally Delayed 2. Mental Retardation and 3. Cerebral Palsy.” There it was. The end of our life as we had always known it. Over. Rock bottom. Upside down.

Our Oia? Cerebral. Palsy. Two words that have taken me nearly two years to feel comfortable enough to say aloud. Oia was diagnosed as a spastic quadriplegic with microcephaly.

The rest of the conversation with the neurologist was a total blur. All I remember at that point was sitting in that cold room, holding Oia, and crying so hard that I shook. I could see Rob through my tears and he was sobbing, holding his head, shaking. It was THE WORST day of our entire lives. It was not fair. Not fair for Oia. What did she do to deserve this? It had to have been my fault. Just 7 ½ months ago we were upstairs in the same hospital meeting our ‘healthy’ baby girl. Proud. Smiling. Laughing. Overwhelmed with love. Feeling speechless. In awe. Now we were completely speechless for an entirely different reason.

That night Rob and I were zombies. We never stopped crying. We never stopped holding each other or Oia. We needed her close to us. We even kept her in our bed that night though we never really slept. All we could do was think of the future and cry. Will our daughter ever walk? Will she talk? Drive a car? Will she be able to live on her own? Would she go to college? Would she find love and marry one day? Would she ever be called ‘mommy’? Our thoughts took us to dangerous places in the distant future. It was a brutal place for our weak hearts to be.




Unexpected lesson #2: Take all things day by day, one step at a time and embrace each moment you have. All you have is now.

And unexpected lesson #3: We are not in complete control of our lives. We would have never chosen this for our daughter. We are at the mercy of God’s plan. I am ashamed it took an event such as this for me to see it.

The next step was an MRI which was scheduled for a few days later. Another cruel experience. Oia was to ‘nap’ through the MRI. That went over like a lead balloon. For those of you who don’t know, an MRI is quite loud. We had to return the following morning to try it all over again, this time with sedation. Better, but Oia still needed two doses of sedation to lie completely still for the scan. The MRI showed static schizencephaly with a present, but thin, corpus callosum. This was attributed to an intrauterine stroke which occurred early in Oia’s development, probably within the first trimester of pregnancy. An EEG was also scheduled following the MRI to understand Oia’s brain activity and hopefully explain those random startles which came and went in a month’s time. The EEG showed signs of irregular ‘firings’ in her brain so in addition to cerebral palsy, she was labeled as epileptic as well. We were given a prescription for a seizure med but we were told it was up to us whether or not we gave it to her. She didn’t really need it but we were told it wouldn’t hurt her to take it. The doctor mentioned that the med could make Oia irritable. We put that prescription in our back pockets and chose to not start her on it. We needed that smile of hers to get us through this mess and with no current seizures…we passed on medicating. Thank God that no clinical or sub clinical seizures have been observed to date and the startles have not come back and we pray this doesn’t change.

So now what? Our plates felt full. Our hearts felt heavy. We felt the need to jump on any and all opportunities that would benefit our already delayed daughter. We immediately contacted our states Early Intervention Service (we lived in North Carolina at the time) and the evaluations began. She qualified for physical and occupational therapy. I would rush home from work to pick up Oia from the sitter in time to make whatever therapy appointment we had. It felt like a rat race for a long time. Thankfully, as a teacher you have your summers ‘off’ and it would be spring soon. I wanted that school year over sooo badly and I wanted to NOT return to teaching in the fall. Before diagnosis, I cried driving to work everyday leaving Oia behind (even though she had a fabulous sitter) but now after diagnosis there was NO WAY I could justify spending the majority of my day in a classroom of 20 some children when I had my one child at home who needed me.

Summer came and we just tried to relax and cope with our new life. I still kept hoping and praying for a way to stay home with my daughter by not returning to the classroom in the fall. We began Oia on her first Constraint Induced Therapy (CIT) at The University of North Carolina. Oia’s left arm was casted for 21 days to encourage her to recognize and learn the use of her right arm and hand. She was already showing signs of developmental disregard for that side. The CIT program made a difference in that she learned she could move her arm and at the very least she learned it was THERE. That was a big deal.

Remember unexpected lesson #3…we are not in total control of our lives…we are at the mercy of God’s plan. There was a big change in our ‘plans’ which was no doubt an answered prayer. Early that summer, Rob received a call from a recruiter to run the daily operations at The University of Virginia Transplant Center. After 8 years in his current job, he was eager to start a new venture which made the professional decision to move very easy. Even though this was my opportunity to stay home now if we decided to make the move, it was still a very hard decision to make. Rob and I can make the most out of living anywhere but now we had Oia and her needs to consider. That changed everything. She received excellent care through NC’s EI Services and UNC but what care would Virginia provide? We spent a lot of time researching this and came to the conclusion that The University of Virginia’s Kluge Children’s Rehabilitation Center and Virginia’s EI Services would offer all the services that met our needs. Decision made. Contacted a realtor. Bought a house in Virginia. Moved 2 months later. The week that my school resumed for the ’08-’09 school year was the week we moved into our new Virginia home. God works in mysterious ways. A stay-at-home mommy at last!



Flash forward now a little over a year...early November 2009. We went for our scheduled 6 month check up with Oia's neurologist which brought a change to Oia's cause of Cerebral Palsy. Here is how that appointment unfolded:


I'll start by saying that Dr. T was so impressed to see Oia moving as well as she was and she even walked on her own into his office. He was pleased to see her using her right hand to help hold her sippy cup once she was prompted to use both hands with a verbal reminder. Dr. T said developmental progress is an outward positive of what's happening on the inside, ie. her brain activity. He asked us some basic questions...Is she eating well? Yes. Does she sleep well? Yes. Talking any? Not really, she's very vocal but not verbal. And then with some hesitation in his voice, he asked if we have observed any seizure-like activity yet. By the grace the God the answer was no. He is absolutely baffled by this. All of Oia's conditions, or brain abnormalities by medical definition align with seizures. Around 95% of kids like Oia have seizures on a regular basis and require medication. I knew her risks were high but I never realized it was that high. It makes my stomach flutter to think of this changing in just the blink of an eye. It could. It could all be very different tomorrow and seizures could be a part of our world at any moment which terrifies me. But my 2 yr. old teacher has taught me to live for today and be thankful and so that is what I will continue to do.

Dr. T reviewed Oia's charts again and MRI information and then declared something we never expected. Since diagnosis in April of '08, we were told and believed that Oia's cerebral palsy was secondary to a stroke in utero. As of today, that is not believed to be the case. For the last year, Dr. T has been digging deeper into Oia's files to study her situation and he believes with nearly 100% certainty that Oia did not have a stroke at all. She has schizencephaly (which we knew), not caused by a stroke but rather as a result of a faulty migration pattern of some brain cells to their final position in the brain. This disruption happens in just the very early days of fetal development. Why it happened is a mystery.

That was not really better news or worse news, just parallel news in our opinions. I will tell you though for me, as the one who carried this baby for 9 months, that news lifted what would have been a lifetime of guilt off of my chest. So, in a sense, maybe that was good news for me. I can't control the fact that Oia's brain cells migrated incorrectly but I felt guilt that she had a stroke. Thoughts of exercising too hard, working too hard, stress, etc. consumed me. I carry (carried) a lot of guilt and blame for the challenges that Oia faces. We sing the praises of a compassionate doctor who has not stopped following and studying Oia to determine the true root of her disabilities.

To date, she is acting more and more like a 'typical' 2 year old; with some opinion and sass yet so loving and patient. She is our greatest gift in more ways than I care to count. She is perfect just the way she is and continues to show us through her eyes what it's like to really live with joy in our hearts. Thanks for following our story.

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!

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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.

He's My Son!

Benjamin was born on April 4, 2002. I knew nothing of his many problems until he was born...except that deep down inside during the course of my pregnancy I felt that something was not right. Call it a mother's instinct. (we're usually right) Shortly after birth, my son was taken by medflight to Dartmouth Hitchcock Medical Center. His brain had not developed and he was showing signs of either seizures, myoclonic jerking or a combination of both. As a result, the Intensive Care doctor loaded him with phenobarbital which suppressed his respiratory drive. He was intubated to keep him breathing. I remember those first few days as being such a whirlwind. I couldn't even see straight. (or maybe that was because my eyes were constantly leaking) We were getting hit from every direction with devestating news. They told us that Benjamin would not live. That was the point that we (as parents) hit rock bottom. In the days following his birth, we prepared for his death. Family members from all over flew in to support us during this hard time. We had made the very difficult decision to withdraw his life support and let him go peacefully while surrounded by family. During this preparation stage I was sitting with Benjamin, holding him in my lap. The ICN doctor had come in and was sitting across from me. I remember feeling uncomfortable because he wasn't saying anything to me, he was just staring at Ben's vent while rocking in his chair. When I couldn't take the silence anymore I asked him..."What is going on?" He told me that Ben was breathing above the vent (he was taking breaths on his own) and that he felt that he might just be able to wean him from it. That's when my life took a 360 degree turn. I was ecstatic. I felt hope. I knew in my heart that I would get to take my baby, that I had fallen head over heels with, home. What a joyous feeling that was. My family members still came, but instead of mourning, we were celebrating. I felt like the luckiest mother in the world. (still do) Two days after our gathering, Ben was extubated, and discharged soon after that. Our lives were forever changed.

Benjamin is now a happy, thriving 7 year old. It's not because of his equipment or the formula we are feeding him that he is still here with us (although that certainly helps), it's because he is LOVED. That's the magical ingredient. This child GROWS on LOVE. Every day is a privilege. Every moment is precious. And every night before I climb into bed, I thank my Heavenly Father for the beautiful gift that is my son.

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.

Silent Angel

About Jophie
by Jophie's mom Trina

In 1993 I had just completed my foster parent training. Little did I know that just a few minutes from my home a sweet baby was being born. That baby would soon become my son.

Jophie was born April 9, 1993. I received my foster parent license in the mail on May the 8th and on May the 9th just one month after his birth I received that call.

At 26 I was very nervous to be going to "just peek" at this sweet but very ill baby boy. This would be my first foster child and a baby at that! The next 30 minutes driving towards the hospital seemed like an eternity.

Brain damaged

Vegetable

Medically Fragile

CT Scans show sporadic damage

Guarded Life Expectancy

That was just a few of the words I would hear that day.

Did I hear those words?

Yes.....Sort of.

My eyes could not get past that beautiful baby lying there. His eyes and that hair....Oh my! There was so much more to him than all those big words and tests. He was small at just under 5 pounds. Small but mighty would soon outline the life of one baby boy who many thought had a grim future.

Yes! He was indeed about to show the world just how much more there was to him!

As we began our journey together, it became apparent to me that we were on no ordinary road to say the least. In the beginning the road was full of many bumps as we battled seizures, severe spasticity, feeding issues, many screaming sleepless nights and days as he battled drug and alcohol withdraws.

On February 11, 1997 just 2 months before his 5th birthday, I made this perfect little boy my son and so began our journey as mother and son with a much bumpier road full of its own share of curves, twists, and turns.

His health began to fail slowly but steadily as even more problems began to tumble into the mix. He began having numerous infections, pneumonia's, and rashes of unknown origin. The severity of his cerebral palsy and brain damage were becoming more evident with his age as he appeared to "stand still" in time cognitively. His motor skills were almost non-existent.

At this time it was determined he portrayed skills that of a newborn to 6 month old. Many tests and feeding studies were performed to check for reflux and aspiration as we felt he was doing both based on the chronic lung infections. The tests continued to prove non-conclusive.

By the age of 5 he became infected with varicella pneumonia from the chicken pox vaccine. YES it is unusual but it was what it was. I still thank God every day for my dear friend and sons pediatrician for listening to my heartfelt plea from his hospital room that early 3:00 a.m. morning. Even when the attending doctors felt I was wrong she believed me when I said, "He's dying before my very eyes". Sherries love for Jophie would prove to save his life that day. Thank you my dear friend!

Less than 6 hours later he was being rushed to the PICU in DIC(Disseminating Inter vascular Coagulation), shock as well as a severe case of chicken pox outside and within his lungs. Every breath would prove to rupture those blisters spreading it even more. His respiration's were in excess of 80, his heart rate was zooming. My baby was slipping away fast.

Papers were being shoved in my face. Sign this

Sign that

"Do you want us to save him?

"Is he a full code?"

Extraordinary measures taken?

Can we give blood if we need to?

Those were the questions being tossed at me as they gently guided me from his room.

One last kiss and one last "I love you" were what I thought would be my last.

Hours later by the grace of God AGAIN......Jophie was stable but very critical
He would remain critical for several days which led into weeks and then months. This was by far one of the worst emotional roller coaster rides we had been on thus far.

Over the course of time he would prove to not just me but to many doctors, nurses, and onlookers just how strong a fighter he was and indeed how powerful our God really is. God moved mountains for Jophie and changed many lives during that hospital stay including mine.

The next few months things settled down a bit. He continued to battle chronic pneumonias, infections, and sometimes rare/odd super bugs however, we made the best of it and were able to make some wonderful memories!

By the time he was nearing 6 the pneumonias and infections were pretty much constant. Feeding was becoming more of an issue. Don't get me wrong Jophie LOVED food! His favorites were cotton candy yogurt, pintos and cheese from taco bell....(TONS of sour cream please!) :O) In fact I had just introduced him to chicken nuggets, cheese burgers, chili, and spaghetti! I had found a way to grind up just about anything with a combination of bread and apple sauce making it possible for him to eat.

Just beyond 6 years he was literally bombarded again with not one but 2 super bugs. Staph E. and enterobactor....UGH! By this time in his life, infectious disease had become our closest friends. Jophie continued to be named in their medical books for oddities and super bugs.(I would have rather he been anonymous).

Regardless, this hospital stay lasted nearly 6 months and once again he would meet face to face with death. The super bugs that he had were not only found in his blood but also in the cultures from his lungs. The only way for those to be there would be from aspiration. It was determined that testing be done again for the reflux and aspiration. The testing did indeed prove he was and most likely had been since the age of 2 ("Silently aspirating and refluxing") It had went undetected until that moment.

My world so I thought stopped. The one and only thing that Jophie and I could do together that was "normal" was eating and they were about to take that from us. I fought and wrestled with God. NO! I did not want this to happen. Don't take away the only "normal" thing we can do together. He enjoys eating so much!.

Finally, after tons of praying, struggling, fighting and arguing with God literally, I realized it was either this or he was going to die. My focus switched very quickly to being thankful for his life. I also knew that even though we had been dealt another blow, with my help Jophie would learn to adapt and we both would come out better and stronger than before!

All food at that time was stopped forever, a central line was placed, TONS of steroids were put on board for healing his lungs, many big gun antibiotics to battle these 2 bugs were being used AND TPN and Lipids were started to sustain him until which time he could recover enough for surgery.

The plan was to perform a fundoplication(Wrap the esophagus around itself to stop the refluxing and aspirating), place a feeding tube and cut the muscle where the intestines meet the stomach to create quicker dumping.

Without all the food and liquid that his little lungs had grown so accustomed to, his body slowly began to heal. When he showed what we felt was the best improvement, his surgery was scheduled. That 2 hour surgery turned into 12 because of many complications. The surgeon was able to perform all but one of the procedures. She was unable to cut the muscle for quicker dumping due to time spent under anesthesia, lack of access due to his misshapen back/chest, and scar tissue from damage sustained over the years.

Jophie healed slowly after surgery due to his puny state to begin with and by the first of the year we were able to return home. At home IV therapy was continued via his central line by me for the next 6 weeks. We had to continue for 6 more weeks after that because his blood was still testing positive for the staph E. Finally, all blood work came back negative and his central line was pulled.

During the summer/fall of 2004, Jophie would spend nearly 5 months hospitalized facing death toe to toe once again.

During this stay he would be infected with Proteus Morabilis TWICE, Pseudomonas, Stenotrophomonis Maltophilia, A pleural effusion and thank God it resolved itself, An AVM(Arterial Vascular Malformation) which caused a GI bleed and surgery was required to repair it, Paraflu(Which we both had for 2 weeks), Psueodomonis became active AGAIN, many allergic reactions to antibiotics, Tons of side effects, withdrawals, rashes, severe diarrhea, Neutropenia(Low white count), Pancytopenia(Low white count, red count, and platelets), blood transfusions, adrenal failure, AND finally home! Phew! What a Ride!

One year later he was still trying to recover. His body was battered, much weaker, and we continued to control break through seizures that at one time were mostly controlled and were unable to fully wean him from the very steroids that saved his life. We now fear his adrenals have failed because of it. We're hopeful the adrenals will begin working on their own again but, until that time the steroids that have caused this problem are once again saving his life.

Two years later in 2006 he would be hospitalized with Mycoplasma and C-Diff. Fortunately, I was able to bring him home after only a weeks stay. I along with Jophie's nurses would continue a 6 week long treatment regimen to kill those nasty bugs. It was during this time that I finally accepted the fact that I just couldn't keep track of all his medications. The many medications he was taking multiple times during the day made that abundantly clear. I usually manage just fine however, when he is ill you have to add the "extras" on TOP of what he already is taking and that's when my eyes begin to cross. The solution. A dry erase board mounted on my living room wall.:0)

March 2008 would prove to be another life altering hospital stay. After nearly going into respiratory failure, Jophie was transported via ambulance to the hospital where he landed in the PICU for the next 3 weeks in very critical condition.

Over the years Jophie's back/shape has gotten much worse making it next to impossible to treat him during a crisis. Fortunately, the wonderful PICU docs and staff were able to stabilize him on CPAP rather than placing him on the vent. He responded very well to this treatment and it would prove to save his life.

Tests would reveal an active Pseudomonas again. For those of you who haven't followed Jophie, he is colonized with Pseudomonas meaning it never goes away but rather goes into an inactive state. The plan is to keep those evil bug colonies down to a small number all the while trying to build up Jophie's good army who are in a constant battle to keep those evil ones at bay! I like to think of it as dragon slaying. Now if I could just find me a knight to slay these dragons we might be in business ;)

Because of Jophie's misshapen body and the poor state of his overall health it was determined that a trach was in order to prolong his life, give him a better quality as well as make it possible to effectively treat him during a crisis all of which I felt were very important if not life sustaining. What I didn't know was how long it was going to take to get to this point nor what he/we would have to endure along the way.

To say the last 7 months have been horrendous would be an understatement of great magnitude. If fact, 6 weeks into this new trach lifestyle I began questioning my decision to even allowing it.

The last 6 months Jophie has struggled with severe pain. He was coughing up blood on a regular basis. He was unable to sit up or to vocalize nor were we able to explain to him why. He's dealt with fear and frustration over that inability to vocalize. There has been lots of crying and gnashing of teeth. We both have had many sleepless nights and days as well as many trips to the ENT who was overseeing his progress as well as troubleshooting the problems. My battles with his insurance over yet more medical supplies related to this new trach continue as they still are limiting or refusing to cover needed/life sustaining items. The battles are never ending. Like I said we need a knight to slay these dragons who seem to come in many shapes and forms ;)

During the course of all this mess we were able to determine that Jophie was unable to wear the size or brand of trach that was originally placed. In fact it caused a huge ulcer and nearly bore a hole through his windpipe thus the cause of all the bleeding/pain/infections which led to a 2nd trip via ambulance due to his airway nearly closing off while Jophie's nurse and I watched helplessly. Ugh! A smaller pediatric trach was placed in the ER then he was admitted for surgery number 2 where the new pediatric trach would be evaluated as to whether or not to keep it and repair any damage sustained by the old trach as well as remove any granulation tissue that may have formed. To make matters worse, were having to boil/reuse these trachs which was causing the reoccurring infections not to mention warping the trachs which also caused more damage/injury and could have easily broken off in his airway.
Fast forward to now October 2008.

Jophie is a much happier little guy! After many trials and lots of tears, we've found the brand of trach Jophie can use. Of course its custom and pricier than the rest but, its working and I for one am NOT going to muck with it! Would you? :0) His anxiety/fear has lessened considerably if not completely during daily trach cleaning as well as his weekly trach changes. He's been able to sit up for short periods of time and often for a couple hours. We've really seen improvements just in the last 3 to 4 weeks and have actually been able to do some "fun" things with him for the first time in sooooo long! I can't tell you how healing that has been for not only Jophie but me as well. He's still swollen quite a bit from the massive steroids but we are successfully weaning trying ever so hard to get him back to his maintenance dose. If all goes well barring any complications he should be back to maintenance by the second week of December! Phew! It's been a long road on this wean starting way back in march but so far so good!

Daily we continue to juggle steroid dosages by increasing and decreasing based on illness, stress, infections etc...Infections and super bugs continue to plague him. He now sees a pediatric endocrinologist at Columbus Childrens Hospital for his failing/failed adrenals. 5 years ago I changed his formula to Novasource pulmonary which is geared towards children with breathing and respiratory problems. This formula has absolutely been miraculous unfortunately we've just found out they will no longer be making it so the hunt is on for something comparable. I've also incorporated 3 different types of yogurt including an immunity booster as well as crystal light immunity which we add daily to his water infusions. Our hope is these things will help his compromised immune system as well as the candida that plagues him off and on. He now weighs around 100 pounds and daily we are slowly seeing the sparkle return to his eyes. I know without a doubt the new things we are trying are helping but the real credit goes to our heavenly father who continues to keep Jophie wrapped in his loving/healing arms.

The years have indeed been hard on Jophie. He has endured more than most do in an adult life thats for certain. He's faced death on more occasions than I can count. He's battled the ventilator on more than one occasion and he's had his share of surgeries and surgical procedures. He also has endured and continues to endure more tests, painful and unpleasant procedures, braces and corrective equipment, treatments, surgeries, rare and deadly super bugs and faces many monsters beyond what any of our imaginations could fathom. Jophie accepts all these daily routines that help him to survive and yes....he does this with a SMILE!

As you can see Jophie is MY LIFE. He is in every single breath I breathe. I love him so much sometimes it hurts which only fuels me further to fight for what he needs. He is indeed a special little guy who continues to touch lives everywhere he goes. I've been witness to miracles beyond measure and watched Doctors and Nurses stand with mouths gaping open as they try to comprehend what has just occurred. Time and Time again he survives, proclaiming loudly for all who see...

There is a God, I am loved, and above all he is in control. I am not a mistake nor am I damaged goods. I'm perfectly made and worthy of saving.

A masterpiece.

If he does nothing else in this world except for changing hearts and making others see beyond his disabilities and really SEE HIM as the masterpiece that he is, THEN he's accomplished everything.

It's been a long, scary road. We continue to travel this road together. Jophie and I with Jesus holding our hands.

A hero is said to be someone who is distinguished by exceptional courage and strength.

My life has forever been changed by such a person.

He's my hero

He's my son.

A Day in our Life

While most people have long since settled for a good nights sleep, Jophie and I are just beginning our day bright and early at 1 a.m.

1 a.m.--Reposition Jophie/Change diaper and bed pad and/or sheets that are usually wet/Give Carafate/Sterlize water/Add Immunity booster to his water infusion/Begin water infusion which takes 2 hours/Set Timer to alarm every 20 minutes/Albuterol Breathing Treatment

3 a.m.--Prepare Novasource Pulmonary for tube feeding/Crush Medications=Klonopin/Tegretol/Cortef/Bendaryl/Zofran/Mix crushed meds with sterile water and leave to soak/Repostion Jophie/Change diaper and bed pad and/or sheets that are usually wet/Give meds via Mic-key and begin Tube feeding/Set Timer to alarm every 20 minutes to give slow bolus till all feeding is done which takes around 3 hours

6 a.m.--Tube feeding is finished/Reposition Jophie/Change diaper and bed pad and/or sheets that are usually wet/Aluterol Breathing Treatment/Flovent/Begin water infusion which takes 2 hours/Set Timer to alarm every 20 minutes

7 a.m.--Carafate

7 a.m. to 9 a.m./Try to catch a few Zzzzzs!

9 a.m.--Nurse arrives/Prepare Novasource Pulmonary for tube feeding/Crush Medications=Klonopin/Tegretol/Cortef/Zofran/Prevacid/Mix crushed meds with sterile water and leave to soak/Reposition Jophie/Change Diaper and bed pad and/or sheets that are usually wet/Give Albuterol and Intal Breathing treatment/Give Flovent/Set Timer to alarm every 20 minutes to give slow bolus till all feeding is done which takes around 3 hours/I lie down to try and catch a couple more hours of sleep

12 p.m.--Reposition Jophie/Change diaper and bed pad and/or sheets that are usually wet

1 p.m.--Begin water infusion which takes 2 hours/Set Timer to alarm every 20 minutes/Give Carafate

3 p.m.--Prepare Novasource Pulmonary for tube feeding/Crush Medications=Klonopin/Tegretol/Cortef/Mix crushed meds with sterile water and leave to soak/Reposition Jophie/Change Diaper and bed pad and/or sheets that are usually wet/Give Abuterol Breathing Treatment/Give meds via Mic-key and begin Tube feeding/Set Timer to alarm every 20 minutes to give slow bolus till all feeding is done which takes around 3 hours/Eeek! I haven't eaten yet! Make a mad dash to grab some food!/Grab any meds at pharmacy/groceries/pay any bills that needs paying while I'm out and about

5 p.m. on Monday/Tuesday/Thursday Nurse leaves/3 p.m. on Wednesday/Friday Nurse leaves

6 p.m.--Reposition Jophie/Change Diaper and bed pad and/or sheets that are usually wet

7 p.m.--Give Albuterol and Intal Breathing Treatment/Give Carafate/Begin water infusion which takes 2 hours/Set Timer to alarm every 20 minutes

Try to snatch a few more Zzzzzs here!

9 p.m.--Prepare Novasource Pulmonary for tube feeding/Crush Medications=Klonopin/Tegretol/Cortef/Mix crushed meds with sterile water and leave to soak/Reposition Jophie/Change Diaper and bed pad and/or sheets that are usually wet/Give Abuterol Breathing Treatment/Give meds via Mic-key and begin Tube feeding/Set Timer to alarm every 20 minutes to give slow bolus till all feeding is done which takes around 3 hours

1 a.m. and we begin all over again!

This breakdown of our schedule doesn't even include the many other things that have to be done daily with no set time. I've only included the necessary things that HAVE to be done and HAVE to be on a schedule.

Now for the "other" things that also need tending to but we have to just work in between everything else

1. Tubing changes on his Oxygen Concentrator/Nebulizer/Air Compressor and Tubing to his trach

2. Equipment check on all of his equipment to make sure everything is in working order

3. Answering any alarms from those machines

4. Suctioning

5. Range of Motion/Stretching

6. Bathing/Grooming

7. Cleaning Filters to all machines

8. Sterlizing water and/or any equipment supplies that need it

9. Laundry and just keeping up with his Bed pads/sheets/clothes that tend to be
soggy from just bout every body secretion you can imagine is a chore in itself and then theres mine!

10. Dishes

11. Sterlize/wash all his tubes/syringes/feeding bolus sets/Trach mask/Nebulizers masks/Trachs/bottles

12. Pooey Patrol! Every 3 days we have to give prophylatic medications to keep up with that little sluggish system of his! ;0)

13. Phone calls daily to Medical supply companies/Insurance

14. Restocking Medical Supplies/Putting Medical supplies away as they are delivered

15. Bills that have to be paid

14. Trips to the pharmacy for medications which seems to be neverending

16. The house and outside yard comes very last but still houses need cleaned and yards need mowing

Now try slipping in there an "outing" or something "fun" for Jophie besides all the medical stuff or how bout a doctors appointment or worse still he gets sick and then we have a whole nother set of meds and treatments!

Phew! Jophie sure is a busy kid and keeps his momma and nurses busy too! It definitely takes a team to care for him and meet all his needs on a daily basis. I'm very thankful for the nurses we have and wouldn't trade them for anything. In fact, they are more like family than "hired help". I like it that way especially for Jophie. Everything in his life is so "clinical/medical" and his home is one place I won't have that. He needs to feel comfortably in his home and know this is a fun/safe place to be! Now, if I could just find another nurse to fill these gaps we are having on the weekends I'd be one happy camper. We are still winging it alone every other Saturday and are limited 3 out of 4 of our Sundays. This weekend is one of those weekends and I for one can tell you....I am one tired momma! No regrets and no complaints from this corner though! I'd go to the ends of the earth to meet Jophies needs no matter how tired it makes me!

Meals 4 Wheels is a collaborative project inspired by Jophies need for transportation and medical supplies. Due to Jophies progressive illness, he is no longer able to ride in our current vehicle safely or comfortably. Our goal is not to get a new car, but to supply Jophie with a safe means of transportation. As medicaid continues to cut costs and pay for less of his medical supplies and equipment, Jophies needs have become greater. This is how the idea of the cookbook came about.

The actual cookbook was created from our success with weight loss. Since May of 2007, six of us collectively have lost a total of over 200 pounds. This was done exclusively by using the types of recipes in our cookbook, exercise, helpful tips as well as an overall lifestyle change. Through a lot of experimenting we were able to create healthful recipes without compromising what we all love most. The Taste! We believe that this cookbook can help you successfully lose weight and improve your own quality of life, just as by purchasing one you will help us to improve Jophie's quality of life.



Please support Trina and Jophie by leaving comments and checking out the cookbook site here.