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 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.