Monday, December 28, 2015

Simple Gifts

'Tis the gift to be simple, 'tis the gift to be free,
'Tis the gift to come down where we ought to be,
And when we find ourselves in the place just right,
'Twill be in the valley of love and delight.
When true simplicity is gain'd,
To bow and to bend we shan't be asham'd,
To turn, turn will be our delight
'Till by turning, turning we come round right.

-Anonymous (Shaker Hymn)

A Lot of Changes

There has been a lot going on in the last couple months that it has taken me a while to sit down and write about it.

Too busy living it I suppose. Between Kyle going to school, Morgan and her many activities and work, seems life is moving very fast with little time for reflection. The biggest changes are because Morgan is growing. She is getting bigger and stronger and more lovely every day.

Kyle is slowly getting used to school and following the rules-something the little stubborn man struggles with-and learning how to read and write, etc. He loves school but also loves deciding what he will do and when. This doesn't go over well with the teacher and we have many conversations between Kyle's teacher, Kyle and myself. Every day I drop Kyle off at school, I cross my fingers and repeat over and over under my breath, "please behave in school, please behave in school." Sometimes he decides he will conform for the day and others he doesn't. Sigh... At least he is learning a lot and has made a lot of friends.

Morgan is growing and at her last checkup it came to my attention that she has officially grown out of her infant car seat. She's too long. I knew that it was coming. That soon we would have to figure out a way to get Morgan around. She's not walking yet and needs support while sitting up. This is why the infant car seat was so nice. It gave her the support she needed while giving me a way to take her places without having to hold her the whole time. I've had to figure something out.

I created a support for her so that she has some assistance while sitting in a shopping cart. This has allowed me to do the grocery shopping with her. I've had to keep the trips rather short as Morgan gets tired but so far it has worked.

And Morgan now has a wheelchair! It looks more like a stroller but it serves the purpose of giving her the proper support while we are out and about. Her Physical Therapist brought it for her and we can hang on to it until we don't need it anymore.

All of this has been a big adjustment. All for the best, but still a huge adjustment.

Being out with her now invites stares and puzzled looks rather than the accustomed "oh, your baby is so cute!" which we always got when she was sitting in her car seat. Now mostly people look at her and wonder what's going on. I knew this would be a part of day-to-day life but still it takes a little getting used to.

Now I drive around with a handicapped license plate which a use whenever I'm with her and I must admit at times I feel a little conspicuous. But as time goes on, this will also become my normal.

Both kids are thriving right now and even though Morgan has been sick consistently with short breaks in between, she's tolerating being sick well and making good progress. It's fun to watch her play and smile. Kyle loves school and is happy. And that's all that matters. 

Sunday, November 15, 2015

Parent's Conference at the School for the Deaf and Blind

Last weekend was a busy one. Danny, Myself and Morgan traveled up to the School for the Deaf and Blind in Ogden for the Parent's Conference for the Parent Infant Program for the Blind and Visually Impaired. Kyle got to experience his very first sleepover at his cousin's house. I was a little worried about how well Morgan would handle the short trip but she did surprisingly well.

At the Conference, we listened to speakers, participated in workshops and learned more about CVI (Cortical Visual Impairment). This helps so much with Morgan, giving us a better understanding of how CVI works and the different ways we can help our Little Ball of Worry. We came away with a lot of information and ideas. My head has been buzzing with all the information. Mulling over everything they discussed and how it applies to Morgan.

We were in good company. Parents like ourselves figuring this out. There were a few other parents like us dealing with medically complex children where vision is only one piece of the puzzle.

Odd. But sometimes I envy parents who have only ONE condition to contend with. I know I shouldn't but I can't help it. Not that their situation is in any way less profound or life altering. Just different, and from my point of view, maybe a little less complicated.

At the conference, I got some great ideas for toys and sensory exploration. I took photos of some of the ideas and created for Morgan, with Kyle's help, a sensory board for Christmas when I got home.
I have so much to learn and even as I learn, Morgan is changing. This conference was a nice little break from our usual routine. I'm grateful to the Parent Infant Program for providing us the opportunity to attend. It was a great experience.


And Kyle had an amazing time at his sleepover. He was exhausted when we picked him up.





Sunday, October 25, 2015

The Hits

Sometimes I get hit. Not physically (thought it might as well be) but emotionally and mentally. It happens when least expected, at the most unlikely times. I've tried to anticipate getting hit but that doesn't work. I simply have to accept that no matter what I do, no matter how positive I train my thoughts to be, I will get hit.

I believe anyone who've been through, or are going through, something traumatic have experienced this phenomenon. You're going about your day doing your normal routine when BAM! out of nowhere something reminds you of everything you've been through, are still going through. It hits you. And you have to sit down, cry, and/or experience the rage that flows through you with such strength that you feel out of breath. I had a lot of "hits" in the beginning, when it was all new with Morgan. I would see a typical 6 month old out in public and be reminded of how non-typical my girl is. And it hits me. Call me over-emotional but there is nothing else to do but feel it. The pain of not having a healthy typical daughter, the moments of flashback over all the scary situations we've lived through thus far, the scary moments still to come. And knowing, inevitably, they will come. And I cry. Anything could set it off. Anything could cause the hit.

As time goes on, I've noticed the hits not coming as frequently. It's been at least a month since I've been hit with anything. It helps that I'm growing into this life, becoming a little better at navigating the situation as time goes on. Morgan's challenges are simply woven into our daily lives. No big deal. Right.

Except when it is.

I didn't know how rough this last week was going to be. I got hit a lot. I was watching a special on PBS about Brain Consciousness and thoroughly enjoying it till the EEG. They began an EEG to show the brain's activity in sleep. They showed him wearing the scanners, then they showed the EEG read-out. And that's all it took. In my mind's eye flashed all of Morgan's EEGs, her seizures, her brain MRI and I lost it. I had to turn off the show and walk out onto the deck into the chilly night air. Weeping, I kept thinking "This really hurts, and this is really silly. I need to get a grip."  I couldn't watch the rest of the show.

The hits didn't stop there. Morgan had an appointment with her Pediatrician the next day and it was a rough one. Rough because we went over her Care Plan for the following year. We covered every aspect of her care, what specialists she will need to follow-up with, what tests will need to be done, different therapies and what ones we would need to add on. And we will need to get her a wheelchair down the road.

 A hard appointment. Life with Morgan isn't bad when you take things a day at a time, one step at a time. But backing up and looking at the big picture is overwhelming, scary. A LOT to take in. Too much. I got through the appointment but wasn't doing very well by the time we reached the car. The tears came and really there was nothing I could do about it. There is no choice but to feel it. Feel all of it.

Morgan is doing very well health-wise, her seizures are under control, no major illnesses at the moment. So really a good appointment in that regard. It's just hard to look at the big picture.

I feel pretty good today. Not overwhelmed and pretty happy with the way things are. Back to taking it one step at a time and smiling where I can. It's such a strange way to live, knowing that I will inevitably get hit again. 

Thursday, September 10, 2015

More Worrying about My Little Ball of Worry

Seizures. I absolutely hate the damn things. No matter how many times you see you kid having one, you NEVER get used to it.

I've been meaning to write about this. But it has been hard for me. Morgan had some breakthrough seizures. I laid her down to sleep one night and it happened. Her eyes popped open and she "froze." I kept talking to her and timed how long it lasted while listening to her irregular breathing. About a minute. Damn. Damn, damn, damn... I was sad and angry at the same time. I thought we would have more time than this. I thought, hoped, that once they were under control, they would stay under control.

I know that we will have to watch for seizures her whole life, but I've heard of kids with Idic 15 sydrome getting the seizures under control, then having them perhaps reoccur a few years later - or not at all. I was hoping she was done with them, at least for a long while. Four months. Four months seizure free. Not enough time at all. And I wanted more time. She deserves to have more time to just be, more time to grow and develop without the constant interference of seizures.

The next morning I was emailing her Neurologist. That night, more seizures.

A peculiar thing happened though. Our dog Molly is my constant shadow when putting Morgan to bed. She stays in Morgan's room while I go through the bedtime routine. Once I lay Morgan in her crib, I turn out the light and Molly follows me out. This time, she didn't. She stayed in Morgan's doorway, curled up and laid down. I turned back to see her laying there staring intently at me. This was not normal behavior for Molly.

Molly is a very lighthearted, timid Border Collie/Heeler mix. She has always detected when one of us is sick before we are aware of what's going on. She has done it with me when I've been very sick, she did it with Danny while he's been sick, and she has done this countless times with Kyle. She would act agitated or engage in some other abnormal behavior. This laying in the doorway and staring at me thing was definitely not normal. She never lays in doorways, and she only stars at me like that when she is trying to get me to do something.

I stared back for a moment. In that moment I realized two things. One, Morgan is going to have a seizure, and my heart just sank. Two, at this moment, I'm not the only one watching her. I'm not alone in this. This last realization was very comforting to me.

Morgan had two seizures that night. The next day I heard back from her Neurologist and we were going to increase her meds gradually beginning that evening.

Now an idea has been planted. The seed has taken root and is sprouting rapidly. A Seizure Detecting Service Dog. I'm now on a quest. I've been making inquiries and researching. I don't have any answers yet but I've connected with a couple other parents across the country who have Seizure Detecting Service Dogs for their kid who also has Idic 15 Syndrome. I think Morgan may be a bit young yet, but I intend to get the process started as soon as possible. It won't be easy, and there will be the question of funding, but I have to find a way to make it happen. The idea of her having a trained dog sleeping beside her would allow me to rest better at night. Knowing that someone other than myself was on watch would take give me a great deal of comfort. It is exhausting living in a constant state of ultra alertness.

In the meantime, how do I encourage Molly's unique ability? I don't know why she detected the seizures in this instance and not all the other times. Maybe they were occurring so frequently before that they seemed "normal." Maybe, because she has been seizure free for four months, Molly was able to tell the difference. Whatever the reason, I figure if she did it once, she can do it again, or at least I hope so.

I was truly hoping that we had seen the last of the seizures. my greatest wish was for Morgan's seizures to be over and done with. During the four month respite, I think I convinced myself that we were through with them. It was disappointing, to say the least, to see her have them again.
Since increasing her meds, I'm happy to say I haven't seen any further activity. Please let it stay that way

Wednesday, August 19, 2015

Turning Five

I can't believe my Little Man is five years old. The past five years, with the exception of the time that Morgan was born to when her seizures were brought under control, went by in a blur. Watching Kyle grow is one of the greatest pleasures I've ever known.  I've cherished every moment. I remember holding him when he was just a baby thinking that this wasn't going to last long, that he wasn't always going to be this little, and that I better enjoy each stage of growth he travels through on his way to adulthood. Even when he has driven me to wits end, I can't help but feel the tug at my heart every time I look at him. I never imagined how much joy he would bring into my life. Even when he tests me, even on the days when I truly look forward to when he's in bed, my life is fuller and more wondrous than I ever thought possible.

There are many big milestones in my life. When I got married. When I earned my degree. But nothing else has changed my life, changed me more, than when Kyle opened his eyes for the first time. My life is divided in to two timelines, pre-Kyle and post-Kyle. My life before becoming a Mom and my life after becoming a Mom. He has eradicated the unnecessary and sharpened my focus to include only what's important and leave all the rest behind.

He starts Kindergarten next week and I'm excited for him but sad at the same time. Thus far I've been teaching him Preschool at home. With the doctor's concerns about Morgan's immune system and her ability to fight of any sickness, sending Kyle to Preschool was impossible. So Kindergarten will be his first experience with School, adding a new facet to our lives. And he is READY. I'm not so sure that I am though.

I love my Little Man more than I can say and I'm so grateful to have him. I love his kind heart and independent spirit. I look forward to every new moment, every new step.

Here are some things that Kyle has said to me that I think you may enjoy:

I'm dragging myself through the day and I ask out loud to no one in particular "Why am I so completely exhausted all the time?" To which I hear Kyle reply from the next room, "Because you are Mommy."

Kyle is now into bugs. We now have a bug jar that sometimes contain live creatures of one kind or another. One day after weeding the flowerbeds with Kyle, he comes in with three snails. One big one and two baby ones. I ask "What are their names?" Kyle answers, "The Daddy snail is Snake and the little ones Meeko and Yoki."

"He's a great hero!" Kyle says this about every action figure he has.

He loves the Angry Birds game, but for some reason, despite knowing the real name of the game, he insists on calling it "Angry Chickens."

He used to make up words for everything rather than be bothered with using the real name. I don't know the reason why or how he came up with these. Chocolate milk was "chosh," his favorite blanket was his "soup," and our dog Molly was "Bah," to which she responds and is used as a loving nickname.


One day we were driving to the hospital for one of Morgan's Neurology appointments. On the way there we saw an ambulance just outside a restaurant as we passed. The lights were flashing and they were bringing someone out on the gurney. This distressed Kyle. "Someone's in trouble?" he asked. "Yes, someone got sick and needed help and the ambulance is there to help them." I explained. Kyle got really quiet for awhile. Then he says "Maybe I can be a doctor when I grow up then I can help." This got to me a little. "Yes, maybe you can."

Friday, July 10, 2015

Early Intervention

So what do we do about Morgan's diagnosis? Help her anyway we can. 

Following doctors' orders and medical advice was just the beginning. We would also need more help. A lot more help. And this help came in the form of Early Intervention Services. When Morgan was released from the hospital, the Physical Therapist (PT) who was assigned to her recommended and paved the way for us with the Baby Watch Early Intervention Program to help her along. 

Here's a little about what they do.

The program provides early identification and developmental services for families of infants and toddlers, ages birth to three.


Some of the services offered include:
  • A full assessment of a child's current health and development status.
  • Service coordination among providers, programs and agencies.
  • Strategies to build on family concerns, priorities, & resources.
  • Developmental services: occupational therapy, physical therapy, speech language therapy, etc.


    
These services are provided through the coordinated effort of parents, community agencies, and a variety of professionals.

Morgan started out with PT, and soon as her vision issues were identified, she started receiving Vision Therapy as well.

I'm so grateful for Julie, her PT, and Sandra, her Vision Specialist. I know I would not be able to handle all this without them. Their knowledge goes way beyond anything I know or have access to, and they've taught me so much, giving me the confidence to work with Morgan daily. And any time that Morgan throws me a curve ball, they are there to help figure it out.

Danny and I feel powerless against her diagnosis. That's the truth. Completely powerless. There is simply nothing we can do about it. There is no cure.

But finding ways to help her is empowering. Little things like using ear plugs in busy and loud places
to help keep her calm. Making sure her toys are bright colors so she can easily see them. Learning how she sees and what makes her tick helps her and us deal with the day-to-day. Sometimes it takes some creative problem solving but it's always exciting to see our efforts make a difference for her.

It really is just one small--and sometimes slow--step at a time for her. But that's okay. It's okay because I know that we are doing all we can for her. That we won't be five years down the road wondering what if. What if we tried this or that. Nope. I'm pretty sure we are doing everything we can for her.

And the rest is up to Morgan.

For more information on Early Intervention in Utah, visit http://www.utahbabywatch.org

Monday, June 29, 2015

Morgan's Syndrome - Idic 15 Syndrome or Dup 15q Syndrome

I haven't really talked about the details of Morgan's diagnoses. I've gone a little into what we've had to contend with, the seizures, the VSD, vision issues and developmental delays. But I haven't really given the run-down of what it is.

First of all, the syndrome she has is rare. Estimated 1 in 30,000 people are born with it.

Morgan has Dup 15q Syndrome meaning she has a partial duplicate of chromosome 15.

There are two main types of chromosome 15 duplications. Interstitial and Isodicentric. Morgan has Isodicentric or Idic 15 Syndrome.

Confusing, I know. It has been easier to just say that she has Idic 15 Syndrome because that is what her medical diagnoses says and all her corresponding medical records, even though it is also referred as Dup 15q Syndrome.

So, brace yourself. Here is the scary truth of what Morgan has...

Isodicentric 15 Syndrome

All information was obtained from the Dup15q Alliance. For more information please visit http://www.dup15q.org/clinical-information/clinical-features/

Isodicentric chromosome 15, abbreviated idic(15), is diagnosed in individuals who have 47
chromosomes (or sometimes more) instead of the typical 46 chromosomes. The extra chromosome is made up of a portion of chromosome 15 that has been duplicated and "inverted," so that there are two copies of part of chromosome 15q attached to one another that appear to be mirror images.
Because of this arrangement, idic(15) used to be referred to as "inverted duplication chromosome 15." Most commonly, the region called 15q11-q13 is the portion of chromosome 15 duplicated.

Hypotonia (Poor Muscle Tone). Babies with Idic 15/dup15q usually have hypotonia. Motor milestones such as rolling over, sitting up, and walking are significantly delayed. Older children and adults with hypotonia often tire easily. 

Physical Features. Many children with dup15q share similar facial characteristics. These include a flat nasal bridge which gives them a "button" nose. There may be skin folds, called "epicanthi", at the inner corners of the eyes, and the eyes may be deep set. Ears may be low-set and/or posteriorly rotated.

Growth. Somatic growth is decreased in about 20–30% of individuals with dup15q, but head growth is typically in the normal range.

Gross Motor Delays. Gross motor delays are very common, probably partly in relationship to hypotonia. In one article, sitting was reportedly achieved between 10 and 20 months of age, and walking between 2 and 3 years. A current study of children with dup15q found that kids with isodicentric duplications achieved independent walking at an average of 25.5 months (range 13-54 months), with 3 children (out of 47) who were not ambulatory at the time of testing. The vast majority of people with dup15q are able to walk independently although some degree of ataxia (coordination problems) may be apparent.

Fine Motor Delays. Fine motor delays are widespread among children with Idic 15/dup15q syndrome. Nonfunctional use of objects with an immature type of exploration has been reported in the scientific literature.

Cognitive Delays. Most individuals with Idic 15/dup15q syndrome show some degree of cognitive delay and learning disabilities, including intellectual disability at the more involved end of the spectrum.

Speech/Language Delays. Most children with dup15q are affected by speech/language delays. Expressive language may be absent or may remain very poor, and is often echolalic with immediate and delayed echolalia and pronoun reversal. In her study of dup15q, Dr. Carolyn Schanen found 26 of 47 children had some language at the time of their participation in the research study, with the first word achieved at an average of 28.7 months (range 7-84 months) and phrase speech beginning by an average of 44.1m (range 9-114 months). While the majority of children with dup15q experience speech delays, a small subset of children are highly verbal.

Behavior Challenges. Many children with dup15q have difficulties of behavior and social communication, with a lack of response to social cues frequently observed. In older individuals, there is some suggestion of improving social awareness with age.

Vision Issues. Some children have cortical visual impairment. This seems to improve with age and therapy.

MEDICAL ISSUES IN IDIC 15 or 15Q DUPLICATION SYNDROME

SEIZURE DISORDERS. Seizures represent an important medical feature of dup15q syndrome. Over half of all people with idic(15) will have at least one seizure. The majority of those will experience their first seizure before age 5, but seizure onset may occur as late as young adulthood. There are many different types of seizures experienced by individuals with dup15q. Children can start with one seizure type and other seizure types may emerge as the child ages. The prevalence of infantile spasms among a surveyed group of families was unusually high and suggests that idic(15) could account for a significant percentage of infants experiencing those episodes. Infantile spasms associated with an hypsarrhythmic (disorganized) EEG have been reported in the scientific literature. Typical Lennox-Gastaut syndrome or Lennox-Gastaut-like syndrome was observed in the four patients with idic(15) reported by Battaglia et al. These had tonic/atonic (head drops or drop attacks), tonic-clonic seizures and atypical absences with onset between 4 and 8 years of age. Complex partial and myoclonic seizures have been observed in a number of other affected individuals.  Response to treatment is variable. For some children their first presenting seizures are easily controlled with medication. However, there  are many reports in the scientific literature and from parents of seizures that are difficult to control, despite adequate antiepileptic treatment. Difficult to control seizures associated with some degree of deterioration have also been reported.

AUTISM SPECTRUM DISORDERS. Multiple research reports document the risk of autism spectrum disorders in individuals with dup15q, although not all children with duplications develop autism. Two studies that included a total of 226 patients with autism found dup15q in approximately 3-5% of the patients. Chromosome 15q11-13 duplications are the most frequently identified chromosome problem in individuals with autism.

SENSORY PROCESSING DISORDERS. Parent report suggests that sensory processing disorders are widespread in dup15q syndrome. These sensory processing disorders disrupt the affected child’s ability to achieve and maintain an optimal range of arousal and to adapt to challenges in daily life. These disorders are often manifested by an over-responsiveness or under-responsiveness to sensory input (sound, touch, taste, etc) or fluctuations in response to sensory input.

ATTENTION DEFICIT DISORDERS. Attention deficit disorder/hyperactivity has been reported in a number of cases of children with dup15q syndrome.

ANXIETY DISORDERS. Parent report of anxiety disorders in children with dup15q syndrome has been noted among Dup15q Alliance families. More research in this area is needed.

INCREASED RISK FOR SUDDEN DEATH. There is an increased risk of sudden, unexpected and currently unexplained death among children and young adults ages 7 and older with chromosome 15q11.2-13.1 duplication syndrome. The risk is small, estimated at 0.5-1% per person per year. Physicians should be alert for potentially relevant symptoms and follow up their patients according to their best clinical judgment. Benzodiazepines and barbiturates should only be used if alternatives are not available, given a possible association with sudden death in this chromosomal disorder. For more information, see the Physician Advisory Sudden Death in Chromosome 15q Duplication Syndrome at www.dup15q.org.

OTHER MEDICAL PROBLEMS. Other reported medical problems include recurrent respiratory infections in childhood, middle ear effusions requiring tubes, eczema, and other problems.
Overall, it's a lot of information and a lot for a parent to take in. I have to re-read all of this occasionally as I can never remember all of it.

She is a handful, our little Morgan. But despite her syndrome and all that it entails, she is the most amazing little girl. She has a strong spirit and the depths of her beauty and mystery are endless. I can only hope that we are strong enough to continuously take care of and provide for this extraordinary human being. 

Friday, June 19, 2015

No More Plans

I'm a planner. Everything in my mind is mapped out. I think everything through, sometimes over-thinking and exhausting myself in the process. I like having an idea of what I'm up against. I analyze, turning the problem this way and that, until I feel I've looked at all the angles. Then I decide what to do. I've always looked forward into the future and made plans of how things will probably end up. Things rarely go exactly as planned but never too far off from my original idea. Sometimes I've had to readjust my plan. But over the last couple years, I've been blindsided more than once.

I've always anticipated and prepared. I've always had a plan.

Not anymore.

Aside from some very basic things like planning where I can for Kyle and Morgan, I'm done with plans. For my own well-being I need to let go. I need to follow where life leads me. Take one small step at a time and just go with it.


I'm not saying I'm giving up or that I won't have goals, I'm just saying that I will be limiting my expectations for the future so I can better concentrate on today. 

Morgan is now 76 days seizure free. But who's counting. We have her evaluations with Early Intervention coming up and it will be interesting to see what they say. 

Saturday, June 13, 2015

Is She Expected To Talk?

Morgan has been fighting a cold for the last week. This means it has been a exhausting routine of clearing out her nose, taking her to the pediatrician to be examined, having the nurses suction her out and restless nights. We even spent some time at the Respiratory Clinic in Alta Hospital. Luckily, her cold has not evolved into something else. No ear infection or any other secondary problems. Just a really bad cold. But she sounded absolutely terrible on her 7th day of the cold. She had no fever and no other symptoms but she sounded like there was a motor lodged in her throat. Not wanting to take any chances with her delicate health, I made yet another appointment with our pediatrician's office.

Our pediatrician's office consists of several doctors but, at my insistence,  we deal solely with Dr. Conover. She began following Morgan's case since before Morgan was released from the hospital at 2 months old and has been involved in every aspect of her care from that point forward. She knows Morgan's complicated medical history and during Morgan's rather intense treatment of infantile spasms, saw us twice a week for a time. We feel completely comfortable with her and our appointments are seamless interactions where only the most current issue and bits of information are shared.

So when I called, I was a little dismayed to find that she was completely overrun with patients and there simply was no way to squeeze Morgan in. I was okay with it. Morgan needed to be seen whether by her regular doctor or someone else, at least I could get her checked out. We were scheduled to be there in a couple hours.

I knew what a different doctor meant. It meant explaining. It meant going over Morgan's complex medical history. It meant questions. I did a mental sigh as I got the kids ready to go. I knew what to expect.

We got there and went in through the back door (this should tell you how well they know us) and was shown into an examination room. Once the nurse was done taking all of Morgan's vitals, the doctor came in. He asked me all kinds of question while reading her chart and, like all doctors who first encounter Morgan, he examined her with curiosity and interest.

Then he asked me, "is she expected to talk?"

Some questions are easier to answer than others. Yes, she is delayed. Yes, seizures are a part of her syndrome. No, despite some struggles, she eats quite well. But "Is she expected to talk?" Meaning, will she ever speak? Is a hard question to answer.

Mainly because I don't know. I don't know if she will or if she won't. No one knows. It's entirely up to Morgan. So I answered the doctor the best I could. "She may. I guess kids with her syndrome range from non-verbal to kids who speak quite well." That was about all I could manage.


I'm not used to answering so many difficult questions. Questions about what my daughter may or may not be able to do. And I'm not used to the many questions from doctors and people who encounter her. I know there is a chance that Morgan could be non-verbal. But I also know there is a chance that she will speak and be able to express herself. I know that speech therapy will be in her near future. From that point on, who knows. 

Saturday, May 30, 2015

The Cardiologist - Morgan's VSD

Back in November, Morgan had a Echocardiogram on her heart. This was done to check on her Ventricular Septal Defect (VSD) a hole in the wall separating the two lower chambers of the heart. The Echo was also to ensure that her Pulmonary Hypertension did not return after we had weaned her off Sildenafil, the drug (as well as all the additional medical intervention) that saved her life. The results were good. No evidence of Pulmonary Hypertension and the VSD appeared to be much smaller than before.

So we had the follow-up appointment this week.

Both Kyle and Morgan had been sick this week which meant absolutely no sleep for me. Kyle caught another cold and inevitably, Morgan caught it a few days later. She was tired and miserable with a great deal of stuff coming out of her nose. I decided to swing by our Pediatrician before heading up the Hospital. It was day 3 of her cold and a good idea to make sure she wasn't developing any secondary problems and thankfully proved to be doing alright. Her nose needed to be suctioned out though. This is never a pleasant experience for either of us but gave her a chance to finally rest comfortably because she could breath easily. Good. That should buy me enough time to get through the appointment with the Cardiologist.

Kyle was with us. I figured it would be a relatively short visit since there was no mention of doing another Echo. So big brother was tagging along and doing everything in his power to distract me from the task at hand. This is something he is very good at. But I was glad to have him along and I'm sure Morgan was as well.

So they did an EKG and examination. The Cardiologist asked me to wait while she ran everything by the head of Cardiology to make sure they are in agreement that everything looks fine from the EKG. When she came back I was surprised to hear that the head Cardiologist wanted to perform an Echo on her immediately as it had been a while since her last one. So much for a short appointment. It was a good thing I brought the tablet so Kyle could play his games.

I was a little worried that maybe they didn't like what they saw and that is the reason they wanted to do the Echo. I silenced the worrisome thought. Something I'm getting better at doing. So we were led into a dark room where Morgan was laid on a hospital bed and a tech began the Echo. Kyle thought it was cool. He said, "Wow, what's that?" "That's Morgan's heart, they are looking at it to make sure that it's healthy." I replied. "Wow!" He said again.

After the Echo was completed, we were sent back to the examination room to wait. And wait. And wait. I fed and changed Morgan and tried to keep Kyle from climbing the walls. He was tired of playing his games by then. I checked the time, 4:45 PM. We had been there for two and a half hours. Then finally, the door opened and the head of Cardiology and Morgan's Cardiologist strolled in.
"We looked at her Echo and it appears that the VSD has closed." They then began to tell me the details and spoke about the next time they would want to see her. Not for another two years! "Your daughter's heart looks normal. Do you have any questions?" "None that I can think of." I replied. And with that, we packed up to leave.

Normal, my daughter's heart looks normal! NORMAL!

Thus far, this is not a word that has been used with Morgan much. No need for heart surgery. Her VSD closed on its own! Her heart looks NORMAL!

So, teary eyed and sleep deprived, with two little one's asleep in the back, I smiled all the way home.
 

Sunday, May 17, 2015

Superman vs. The Black Widow (and I Don't Mean DC vs. Marvel)

Wednesday was beautiful. It was sunny and just warm enough to really enjoy opening the windows and back door. We are ready for warm weather, and no one more than Kyle. While I stayed with Morgan, Kyle took his Superman toy outside to play.

He was out playing for about a half hour when I heard "Mommy, a spider on Superman! Mommy, a spider!" I went out on the deck and asked him where. "On Superman's cape!" Kyle was stomping up the stairs holding his Superman toy. "Where was the spider Kyle?" I asked again. "On Superman's cape, but then it ran away." "What color was it?" I asked. "It was black," he replied. Okay. Kyle sometimes mistakes brown for black but I thought I should look into it further. "Show me where Superman was when you saw the spider?" So Kyle led me to our wood fence by the pine tree. There were two large bricks leaning against the fence and Kyle indicated that Superman had been laying beside those bricks.

I could see the outline of the Superman toy in the dirt. At the end of one of the bricks was a fine, chaotic looking web. Uh oh, was all I thought. Using the toe of my shoe, I delicately tipped the brick over to see what was behind. Sure enough, the ugliest, most disgusting of spiders, a black widow, lay behind. I tipped over the next brick. More! More ugly, nasty, disgusting, horrible, heebie-jeebie inducing bits of hell lay behind those bricks! And nests. God only knew what was in those things, but lots of nests.

I told Kyle to stay back. I asked him if he touched it, if it bit him. He kept saying no. Thank goodness! Ugh. With Kyle following me, I checked on Morgan and then fetched the bug spray from the garage. I know chemicals may not be the greatest to use around kids, but I do not care. When it comes to black widows, it is time to resort to chemical warfare.

I sprayed those horrible, nasty, hateful things and sent them back to hell where they belong. All the while Kyle was giggling at me. I made all kinds of disgusted noises like, "Ahhhh! eeeesh! blah! yuck! yuck! yuck!" When really I was using all kinds of swear words in my head that I really didn't want Kyle to hear.

I ended up spraying the bottom of the rest of the fence, the perimeter of the house and other places that held potential. I'm happy to report the ones behind the bricks are dead and the bricks in the garbage.

You can probably tell that I don't like spiders. I especially don't like black widows. And that incident came too close to Kyle for comfort. Damn spiders. I think it's safe to say that I will be more vigilant about monitoring what little creatures decide to take residence in our yard. And it's safe to say that through sheer luck, Superman and Kyle won. 

Sunday, May 10, 2015

Being the Mom of a Typical Kid and One with Special Needs

Being Kyle's Mom is like day, and being Morgan's Mom is like night. The two are so different and the balance between caring for them both can be a difficult tight-rope to walk. Or so I'm learning. I'm only a year into this, with Morgan turning one, but I can already tell that fulfilling her needs as well as Kyle's is going to be an intense job. Morgan's care is challenging to manage, with the many facets that I have to keep track of. Her doctor's appointments and therapy. Her daily medications and monitoring. Kyle has his needs too. They are more typical and for the most part, not nearly as intense, but he still has needs.
I strive to give them both everything they need. Being able to give everything they both need in a Mom is one of my greatest hopes and challenges. I don't kid myself though, I know all too well that I will mess up. Hopefully I won't mess up very often.
Being a parent is challenging. It tests us like nothing else can. It stretches and pushes us, wearing us out to the point of exhaustion. But it's also the most rewarding experience I've ever had.
Being the parent of a child with special needs is also challenging. The same emotions and experiences are involved, but multiplied. Your heart breaks, soars, and breaks with equal regularity. Tears are always just under the surface, ready to spring up at the slightest provocation. Joy is always there too, just under the surface, coming up any time Morgan does something "typical." Not one thing is taken for granted. The smiles, laughs, sounds, movements, can make the whole world shine.
And feeling discouraged. That is a feeling I have to frequently stomp down. I remind myself that it's a miracle this beautiful girl is here. And I remember to be grateful and to be patient.
My Mom and I attended a Mother's Day Night Event last Friday, hosted by the Utah Parent Center. It was called Unexpected Journey by speaker and performer Michael Ballam. He discussed the ability to rejoice when life takes us to places of challenge and blessings we never dreamed possible. Michael shared his own experiences as a parent of a child with a disability through word and music. 
As we watched the people around us, I commented to my Mom that this was a hard club to belong to. A club where each parent is a member not by choice. By circumstances they cannot control. But as the evening wore on and I was able to hear Michael's son, Ben, perform Some Enchanted Evening, I could see the extraordinary beauty that each human being possesses regardless of medical problems, disability or any other issue they may be struggling with. I was touched.
Being a Mom is tough, whether you have a child with special needs or not. But by having Morgan in my life, I'm simply more aware of the precarious nature of our lives. How incredible and fragile each of us are.


P.S. Mom, thank you for coming with me the other night. I was happy to have you with me. Happy Mother's Day.

Friday, April 24, 2015

My Little Super Hero


I never thought that Kyle's sibling would have special needs. I imagined something different for him, and for ourselves. A road a little less bumpy perhaps. I try not to bemoan our circumstances. Things just happen sometimes whether by chance or fate and all I can do is my very best with what we have been dealt. We all have our good days and our bad days. But regardless, there is no doubt that our love for Morgan is strong and bright. No one illustrates this better than Kyle.
He knows that she is different. He knows that she gets sick easy. He knows she has medical problems. He knows she needs a lot of help. And, he's okay with it.
He accepts the situation better than any of us. That's just the way things are. That's just Morgan. I'm always taken by surprise by the way he handles everything. I will tell him that we have to take Morgan to the doctor and his reaction is energetic and supportive, answering with "Ok, let's do it! Let's go!" He knows the doctors help her and has said as much to me.
He is so wild and rambunctious that it is always surprising to see how gentle he is with his sister. He will tear through the house like a whirling dervish only to pause when he sees one of Morgan's socks coming off, gently pulls in back up for her, kisses her on her forehead and bounds away.
Morgan saw her Pulmonologist this week and Kyle wanted to come with us to the hospital. He likes to be there for all her doctor's appointments and was disappointed that he had to stay home. (Her lungs are sounding good. We got the news back on her chest x-rays and they look good. Her lungs are nice and open).  
He talks about what has happened with her and what is happening. He asks lots of questions. He refers to her two months in the hospital as "When Morgan was banished." Not sure where he got that one, but that's what he calls it. A friend or ours gave him an Incredible Hulk toy during that time, so he tells me "Yeah, I got this when Morgan was banished."
He has his moments where he will do everything he can for my attention while I'm taking care of her. He drives me nuts when he does this, because he won't stop until I've looked at him. Normal sibling stuff.
And of all the people in Morgan's life, Kyle can make her laugh the easiest, smile the most. Danny and I will do everything we can to coax a smile or a laugh out of her and all Kyle has to do is show up next to her.
He is my wild four-year-old who can test my patience again and again. He is so energetic, seemingly tireless and many, many times, he doesn't listen. But with Morgan, he is always gentle and he always surprises me with how conscientious he is with her.

He is Morgan's Super Hero.  

Friday, April 17, 2015

Cortical Visual Impairment: Another Piece of Morgan's Puzzle

Cortical Visual Impairment: Another Piece of Morgan's Puzzle
I love my Little Ball of Worry. That's my Morgan, my Little Ball of Worry.
I mentioned in my last post that Morgan has some vision issues. We discovered this a few months ago during her Physical Therapy. Julie, Morgan's Physical Therapist (PT), is amazing and noticed that Morgan was inconsistent in meeting her gaze. Sometimes Morgan would gaze right into her eyes and connect, and other times Morgan would look right through Julie as if she were not there. Morgan had been doing this with Danny and I as well as with objects. So Julie mentioned bringing in a Vision Specialist through Early Intervention Services to evaluate Morgan. I thought it was a good idea and certainly couldn't hurt to have her looked at by an expert. During Morgan's evaluation, the Vision Specialist, Sandra spotted some concerns.
So, we started Morgan's Vision Therapy.
This started the whole ball rolling on Morgan's sight. We scheduled an appointment with an ophthalmologist and our Pediatrician was made aware of it as well. While all this was set into motion, Morgan had her Brain MRI which had been scheduled during the first diagnoses if her Infantile Spasms.
The results of the Brain MRI were a little unusual. Her left hemisphere is a little bit smaller than her right, she has a little bit of fluid which isn't putting any pressure on her brain, and her optic nerves are little on the small side with a little bit of fluid around them. All this sounds a little scary, but honestly, I was a little relieved that it wasn't worse. Unusual is much better than something completely terrifying, and in my mind, this can be dealt with. Our Neurologist didn't seem overly concerned. We do know that there will be another Brain MRI in Morgan's future. The overall recommendation was to follow-up with the Ophthalmologist with the MRI results and ensure Morgan's vision was alright.
Our appointment with the Ophthalmologist went well and we found out that Morgan's optic nerves, while being on the small side, are alright. He reviewed her MRI and examined her. Although she is a little slow to react visually, her eyes are physically alright. But, he did diagnose her with possible Cortical Visual Impairment. That all we could do was continue her Vision Therapy and give it time. "Let's see what she can do."
After working with the Vision Specialist, reading everything I could on Cortical Visual Impairment (CVI) and closely observing Morgan, there is no doubt in my mind that Morgan has CVI.
Here is some information on what CVI is and some of the characteristics from littlebearsees.org. If you would like to read more then I've included here, please visit the website.
What is Cortical Visual Impairment (CVI)?
Cortical visual impairment (CVI) is a term used to describe visual impairment that occurs due to brain injury.  CVI differs from other types of visual impairment which are due to physical problems with the eyes.  CVI is caused by damage to the visual centers of the brain, which interferes with communication between the brain and the eyes.  The eyes are able to see, but the brain is not interpreting what is being seen.
Cortical visual impairment (CVI) is often referred to by other terms including: cerebral visual impairment, neurological visual impairment, brain damage related visual impairment and so forth.    All of these terms refer to visual dysfunction resulting from injury to visual centers of the brain.  We will always refer to it as cortical visual impairment or CVI.
Typical Characteristics of CVI:
1.       Preference  for a specific color. You may have noticed that your child seems to prefer looking at a certain color. Bright red and yellow are often favorite colors, but some children prefer other bright colors such as blue, green, or pink.
2.       Need or preference for movement. Many children with CVI require movement in order to see an object. For example, it may be easier for them to look at a pinwheel or a swaying balloon.
3.       Delayed response when looking at objects (visual latency).  It may take time for a child with CVI to look at an object. Often they will look at an object and then look away. For this reason it is important to give your child enough time when presenting an object.
4.       Difficulty with visual complexity. Children with CVI need simplicity. First, it is important that the object presented is simple. For example, a single colored stuffed animal, like Elmo, is preferable to one with multiple colors. Likewise, it is important that the background and the environment are simple. For example, putting a solid black cloth behind a single colored toy helps to reduce visual clutter. Creating a simple environment is a matter of eliminating noise and anything else that might distract from the visual task.
5.       Light-gazing and non-purposeful gazing.  Often, children with CVI will stare at light. They may be seen gazing out the window or up at a ceiling light. They may also appear as if looking at things that are not there, or looking at things without intent.
6.       Visual field preferences.  Most children with CVI will prefer to look at objects in a particular direction. For example, they may see an object better when it is presented in their periphery, or may turn their head to see an object.
7.       Distance vision impaired.  Some children with CVI have trouble seeing far away. This is related to the preference for visual simplicity. Objects far away may be lost in visual clutter.
8.       Visual blink reflex is absent or impaired.  When an object comes too close to the eyes, or touches the bridge of the nose, many CVI children have an absent or delayed protective blink response.
9.       Preference for familiar objects.  Because it is difficult for CVI children to process the information that the eyes see, they often prefer familiar objects that the brain easily recognizes and has processed before.
10.   Impaired visually guided reach.  The ability to look at an object while reaching for it is impaired.  Often CVI children will look away from the object and then reach for it.
The good news is that with therapy and determination, Morgan's sight will get better and already has. We've seen some exciting developments in the last couple weeks.
Sandra and I have also noticed that Morgan has trouble with sensory integration. That a lot of the time, if there is a great deal of noise going on, e.g. Kyle, she disengages visual because she is concentrating on listening. The same for touch and taste. It's almost as if she can only use one of her five senses at a time. This has improved with therapy. She now can see and feel together and sometimes she will do alright if I add something with sound. But it's very inconsistent.
My Un-Scientific Theory
This is my theory on everything having to do with Morgan's vision up to this point. She was doing very well up until her seizures started. That is when we lost her. We lost her personality, all abilities she had gained, and her ability to see things consistently. She has made some progress with her sight during this battle with her seizures, but not much. It has been the last couple weeks that we've seen some amazing strides. She has now been seizure free for 12 days straight! She sees things that she couldn't before. I've also read that this kind of visual impairment can happen in infants with epilepsy. Her seizures seem to be the cause of her vision issues.

Morgan still has a long way to go, but I'm hopeful this will be another mountain we can scale. And the most hopeful sign of all, her laughter is back... 

Sunday, April 12, 2015

A Moment of Peace As The Seizures Ease Up

We are now on day seven of no seizures!

We celebrated Morgan's birthday yesterday with Danny and I's family. It wasn't as big of a party as I would have liked but it was absolutely wonderful. I would have invited every person we knew to celebrate. As it was, I got her doctor's clearance before having both our families come over. We have been living a little bit of an isolated lifestyle due to all of Morgan's health issues. Her immune system was compromised by the drug we were giving her when we first started treating the infantile spasms and the doctor said it would take a few months to bounce back. And thanks to her first cold last week, we now know that it is indeed, starting to bounce back. What took Kyle and I three days to fight off took Morgan six. But she did it.

And now, looking at her party decorations still hanging up in the dining room, I feel as if I've won a war. I'm tired and wary from battle after battle. Still a little afraid to let my guard down even though I'm now in friendly territory. I still feel a sadness that is reluctant to let go. That wants to stay and haunt me over everything Morgan has gone through and everything that Morgan may yet still need. Struggles yet to come. But I don't let it. I feel it creeping in and I stop it in it's tracks. And don't allow it to come any closer. This time is for celebrating. For peace.

Morgan enjoyed her party. She certainly enjoyed being the center of attention. Only toward the end, when she was beyond tired, did she seem like it was a little overwhelming. I was touched by the thought that went into her gifts. Toys that would be easy for her to play with and see (Morgan has vision issues. More on that later). A pop-up book given by her Aunt, clothes and a beautiful mat and pillow for her tummy time. Every gift was given with the desire to give Morgan things that could help her and give her the most enjoyment.


Kyle wanted to help with every part of setting up for the party. He was trying to be so helpful. And later on, he wore himself out running around with his cousins, being as wild and as loud as possible. And no seizures for Morgan. It was such a good day. 



Monday, April 6, 2015

Birthday Girl!

One year ago today, we welcomed into this world an extraordinary little girl. She has proved to us time and again how strong and determined she is.

I woke up at 5:00 am this morning to her making some soft noises. For those who are familiar with her story, you know this could easily mean that she was having seizures. I looked at her video baby monitor, and didn't quite understand what I was seeing. Not a seizure, she was playing! She was wide awake, kicking and wiggling and making soft cooing noises at her mobile above her.

It brought a smile to my face. I got up to see her and she greeted me with some little noises and more wiggles of excitement. I can't help but think of the day she was born. How scary it all was. And here she is, smiling and being cute. Then I realized, it was exactly 5:00 am when the nurse finally wheeled me in to see her for the first time one year ago today. She was born shortly after midnight, but it took a while to do the procedures that would allow her lungs to expand.

Odd. And kind of cool. So, I sat there with her for a while this morning, thinking on the many terrifying moments of this journey and how maybe, somehow, everything will be alright. I feel a great deal of hope for the future. I think she is doing a good job of teaching me how to cherish each moment and to be strong regardless of the news or situation. How fragile we all are.


Happy birthday my dear Morgan, my little miracle baby. 



Sunday, April 5, 2015

Getting Better

I've almost been too superstitious to write this. A little worried that the moment I say something, we may back-track. But I suppose I'm being a little silly.

The current medication seems to be working.

We've tried something different and more affordable. And it appears to be working. Morgan's seizures are not gone, but they are decreasing in intensity and frequency. Instead of every day, we are seeing seizures every other day or every couple days. And they are shorter. I've been watching her. She is doing things that we haven't seen in a while. She is actively reaching for toys, discovering things and doing things we haven't seen her do since the infantile spasms started. And she is making eye contact... And she is smiling... And we hear the glorious, rare sound of her laughter. While getting her dressed in the morning, she makes eye contact with me and smiles. And every part of me lights up with joy. "Well hello there Gorgeous."


It's so strange. I've been living in this ultra-alert state for a while and it seems that I've not been able to "throttle down," so to speak. It wasn't until our appointment with the neurologist, until I saw a look a relief on his face, that I realize we are making good progress. And I allowed myself to relax a little. The results on her MRI were a little odd, but nothing scary. I admit I cried when I left our appointment. This is the first time since January that Morgan has taken a turn for the better. Let's hope it continues on this path. 

Thursday, March 12, 2015

Adventures In Getting Dressed

Kyle is my never ending source of entertainment. Now that he is dressing himself, there is always some surprise for me during the day. He got dressed one morning and we left to run errands for a few hours. When we got home he dashed to use the bathroom. When I passed by, I saw he wasn't wearing any underwear. "Where's your underwear little man?" He said, "No underwear today!" He had been going commando the whole time. The next day I laid out jeans for him and he must not have liked what I picked out because when he appeared, he was wearing something else. When I finally went into his room, every single pair of pants he owned was sprawled out across the floor, dresser and bed. He had tried on each one until he found something he liked. Sometimes, he will change what he's wearing in the middle of the day.

And then there are the Superman pajamas. I have a firm and fast rule that he is NOT allowed to wear this out of the house. It's a good thing to, because the moment we are home, he puts them on over his clothes. He wears them all the time, not matter what. He objects to the frequent washings and is on my case till they come out of the drier. He soars around the house making sounds of battle while fighting off the bad guys.

The other day, when Morgan was having a seizure, he asked what was wrong with Morgan. "She's having a seizure baby." He thinks about this for a moment and says, "Maybe Superman could help. He's not a doctor, but he's a superhero!" "That would be nice if he could." He kisses Morgan on the check and runs off to fight more bad guys.

If I insist on him wearing something of my choosing, and he doesn't want to, it can be quite the standoff.


Today, Kyle came out wearing shorts, sweatshirt, and the Superman pajama top over the sweatshirt. I wonder what he will decide to wear in a few hours?

Thursday, March 5, 2015

What To Do Next

I find there are times I do alright with all of this. Morgan's health issues, Kyle's needs and the Family's, and times that it is all-consuming, overwhelmingly stressful.

We had another appointment with Morgan's neurologist and the EEG confirms what I've been seeing. That Morgan's seizures have evolved from Infantile Spasms to tonic seizures. There is good and bad news with this. The good news is that Morgan's Hypsarrhythmia (chaotic brain wave pattern) seems to be gone. There are still some abnormality but he said that was typical for someone having seizures. It also opens up other drug treatment options. Though I certainly would have preferred one of the first two drugs we tried to stop the Infantile Spasms all-together. But since they didn't, it's nice to know that there are other options. But I found out that the drug the Neurologist wants to try first is VERY expensive. He warned me and I was thinking maybe we would need to budget for 100 to 150 dollars extra for her meds.

Oh, how far out of range I was. I went to the pharmacy to pick it up and felt my stomach drop to the floor when they said, "That's expensive. It's 571 dollars." 571 dollars! A month! Yeah. That's out of my reach. So these last couple days I've been on the phone with the insurance company, the pharmacy, and the Neurologist trying to see if there is a way to get our hands on this drug. I even called the manufacturer of the med. They generously gave me a savings card taking 50.00 off. While I was doing all this, Morgan had another cluster of seizures, one long tonic then 6 short spasms and all I kept thinking was HELP! If this is what she needs, why is it so unbelievably, outrageously expensive?

I'm still trying but so far no luck. There is a financial assistance application through the manufacturer and that is my next try. In the meantime, we may have to attempt something else. There are no guarantees that it would have worked anyway. It's all trial and error. That's the only way to find the right one for Morgan. So far the meds have been affordable through our insurance company. This one not-so-much. Stressful. I'm waiting to hear back from the neurologist to see what he says. Maybe they were able to pull some strings. I can only hope.

But today is a new day and so far, seizure free.

It's not all bad though. Morgan has changed in the last few weeks. She is more alert, more responsive and making really good progress. I don't know how long her Hypsarrhythmia has been going on but I do know that she is very present with it gone. This haunts me a little. I don't know how much time we lost for her development. I don't know what the lasting effects of the Infantile Spasms and now the seizures will have on her. This haunts me. Yes, Morgan and Hope will forever go hand-in-hand. Without Hope, all this would be too much.