GUEST POST: For Those of You Who Don't See Anything Wrong...by MeMe

This is another Guest Post from MeMe. We are brushing Princess. That may make no sense to some, but for some reason, this little white brush is helping immensely with Princess's issues. Granted, we still have our bad days, but that's okay. This happened on Sunday, October 25.

There are many who have said to us that they don’t see anything ‘wrong’ with Princess.  That she doesn’t seem to have sensory issues at all.  For those that say that, either you aren’t paying attention, or you don’t know what you are looking at, or maybe you just don’t spend enough time with her.  In any event, I am going to describe today’s events, so you can understand.

Today was a pretty typical Sunday.  I got to sleep in, while Becca got up with the dogs.  The kids got up and watched about 30 minutes or so of cartoons – Paw Patrol.  It was then breakfast time and then getting dressed.  Little Man gave us the usual hard time, he’d rather play than get dressed, and Becca brushed Princess and got her dressed.  And then off to Church, which includes a trip through the coffee kiosk and a drive around town, just to get everyone settled and ready, mentally, for church. 

Once at church, I found our seat, while Little Man colored at the back tables, set up for the kids to do such things.  Princess opted to sit with her mother and I, quietly playing with her toys, writing on the program, etc. She was quiet and content.  Once the organ started, she had to sit between us, but again quiet and content.

Children’s time came and the children ran up to the alter, Princess and Little Man included.  Miss Patty talked with them about our event after church, which was a Nifty Nineties Party for those in our congregation who are 90 or older.  Miss Patty had them sit in the front row of pews to watch the slide show of all those who are 90 and over at our church; Princess had to come back and sit with us.  The children were then dismissed to Sunday school and church proceeded.

After church, as I was leaving the Narthex, I could hear the band playing in Charter Hall.  I went into the Education building to collect the kids and Becca and asked if they wanted to go the party.  Yes, was the answer, so we walked over to Charter Hall.  Once inside the building, we made it about 3 steps in when Princess stopped.  It looked like she was mesmerized by the band, but upon watching her, this is what I saw.

Princess went from standing next to her to leaning into her mother.  I asked Becca is she thought it was too much for Princess, at which point she knelt down and talked to Princess, explaining to her about the band, and the music, etc.  Slowly Princess melted into the floor.  Yes, melted into the floor, so that now she was lying in a fetal position on the floor next to her mother.  Becca stood up and said that Princess wanted to stay.  I said ‘okay’ and started over to see our 90’s members.  I turned around about half way across the room, to see Becca and Little Man chasing after Princess, who had left. She just walked out. I caught up with them in time to hear Princess tell her mother ‘carry me, I can’t walk’.  When  I looked at Princess in her mother’s arms, she had tears in her eyes and was on the verge of crying.  We walked to the car – explaining to the other members how it was just ‘too loud’ for Princess.  Thankfully our church family adores Princess and are very in-tune with her needs.  Most could see she was in tears and told her that hoped it got better, or agreed with her, that it was ‘too loud’.

Once home, Princess continued with the ‘carry me, I can’t walk’ to melting into the floor into a fetal position and even saying ‘I can’t get up – help me’.  I suggested her mother go get her changed and brush her.  She did and out walked a totally different little girl.  She quietly played on the couch with her jewelry and toys.  There was no more fetal position, no more tears, no more being paralyzed by a body that didn’t know what to do with the overstimulation of her senses. Brushing had settled her senses and got her back to normal.

I don’t understand how brushing works, nor why.  I just know that it does.  Will Princess have to be brushed forever? NO!  Typically the regime of every 2-6 hours of brushing only lasts 3-4 months and then the child can go to an ‘as needed’ basis.  In the meantime, we are pretty consistent of every 4 hour brushing.  It keeps Princess centered and allows her body to catch up to her senses.  It’s something we will continue and something that she loves. 

For more information on Sensory Processing Disorder:
SPDFoundation.net -- About Sensory Processing Disorder
Star Center -- What is SPD?
Sensory Smarts -- Signs of SPD

For more information on the Brushing Therapy :
Therapeutic Brushing Techniques

GUEST POST: Sensory What? -- by MeMe

Here is another guest post by Princess's grandmother, MeMe. In this one, she explains the different sensory issues that Princess has and what it all means. Yes, all children (and adults too) have sensory issues. It's when it affects their daily life that they need help.

You know that Princess has Cerebral Palsy (CP); we’ve discussed that in my last guest post.  What you probably didn’t know that almost 89% of the people who have Left Hemiplegia (the ‘type’ of CP that Princess has) also have sensory issues.  Sensory issues are known by two names that essentially mean the same thing – Sensory Processing Disorder (SPD) or Sensory Integration Disorder.  What is SPD?

First, let’s take a brief look at CP again.  CP, as you will remember, is a caused by some sort of known or unknown brain injury. Along with that brain injury and resulting nerve damage that it causes, it also causes nerve damage to the way the nerves process the sensory input it receives.  Remember from grade school the 5 senses; touch, hearing, vision, taste and smell?  Well they are obviously processed in the brain by several of the billions of nerve cells all throughout the brain.  When one part of the brain is injured, there is a good likelihood that the way we perceive the input from one or more of our senses is impaired as well. 

The most common known brain injury is Stroke.  Many stroke victims not only lose movement in a part of their body, they also lose sensation from that part of their body or taste, or the ability to smell, or even hearing or talking.  It’s the same way with many of the CP patients.  Except CP is a much milder injury to the brain, for the most part.  Severe CP patients are sometimes are unable to see, even though their eyes are fine, or they can’t hear, even though the auditory system is all there and working correctly.  The reason for this is, because the injury to the brain also injured nerve cells, thus the smell of garlic or a sweet smell of a rose, never connects in the brain.  The nose is doing its job, but somewhere along the nerve fibers in the brain, it isn’t making a connection and therefore the patient doesn’t register the smell at all.

With SPD, the nerves or nerve cells are damaged by the injury.  They are there, they may not be firing correctly or maybe they just aren’t making the complete connection to tell the person what they need to know about the input their senses just received, or perhaps they are over-firing.  For most of us, if we are walking down a busy street and hear a car horn beep, we will startle and look around to make sure we aren’t in harm’s way, and assuming we aren’t, we continue on our way.  When someone with SPD, who has auditory issues, hears that same horn beep, they may freeze, become very fearful, retreat, even into traffic to get away from the noise, become disoriented, pass-out, cry, or a number of other unusual responses.  Their brain is having trouble processing the sound – it’s not making the proper connections and the rest of the brain doesn’t know exactly how to respond. Or, the input is so overwhelming to their nerve cells, that it is causing them to over-fire. With small children, it is typical for them to have, what we call a ‘meltdown’ in either case. 

A meltdown is NOT a temper tantrum.  A temper tantrum happens when the child wants something – a toy, attention, etc.  When that is given or the child is distracted, the tantrum stops.  With a meltdown, the child cannot control their actions until either their brain catches up and tells them how to respond, or they are removed from the offending sensory input.

One of the biggest issues to explain is that many of those that have SPD depend upon things being exactly as they have always been.  Change upsets them, because they have difficulty processing it. For instance the other day, Princess had a meltdown in the grocery store because the bottle of chocolate sauce wasn’t squeezable as she had always known it to be.  She has never handled a brand new, unopened bottle; she had no experience that with a sealed bottle, you can’t squeeze it and it doesn’t ‘feel’ the same as what she knew.  She couldn’t process this and she shut down and then melted down, as her brain tried to catch up to what she has always known.  Princess is 2 years old and although she has a vocabulary of a 5 year old, many of the concepts and even words she doesn’t yet comprehend. As a result, her mother had to show her that ALL the new bottles were like the one she had, AND explain it to her in a way she could understand with her 2 year old comprehension level.  Unfortunately we go through that with many, many things, as there is always something that she has not had exposure to, or that she doesn’t remember having exposure to and her brain therefore cannot process the change into what she expects and knows.

Right now, as I type this, Princess is having dessert and wants a ‘pink’ Popsicle.  She’s already had a cookie, but her brother chose a Popsicle.  We nearly had a tantrum because she ‘wanted’ and wasn’t going to get.  This can turn into a meltdown, even though it starts as a tantrum, as she becomes overwhelmed with the noise of her own crying. Fortunately, the tantrum and possible meltdown was avoided when I explained to her we didn’t have ‘pink’ Popsicles and her mom distracted with playing with some toys.  As you can tell, it gets VERY ‘interesting’ around here.  Meltdowns can last for hours – which means hours of screaming, crying, stimming, rocking and a number of other things, as her brain tries to make sense of the input it is receiving.  It is heart-wrenching and one of the worst things, as a parent and a grandparent, that I have had to witness, knowing that there is nothing I can do to help her make sense of the world, or noise, or change or whatever.

These are some of the areas that we know Princess has an issue with, they may change with time and we may discover more as she grows and does more:

·        Loud noises

·        Groups of people or children

·        Unexpected change

·        Having dirty or sticky hands, fingers or areas on her body

·        Sleeping

·        Severe separation anxiety – she doesn’t feel ‘safe’ except with a few people, due to her other issues.

·        Uncomfortable in anything but certain fabrics and clothing – basically will cause a meltdown.

·        Food if it is ‘broken’ – meaning a cracker that breaks into 2 or more pieces - -she won’t eat it, because it’s broken.

·        Talks with a Boston accent, even though no one in the house does.

So what CAN we do??  Occupational Therapy is the therapy that deals with sensory issues, as it can and does affect the activities of daily living.  You can’t do your daily walk, if every time a car horn beeps you freeze and then run into traffic, trying to get away from this offending input.  So the doctor has ordered Occupational Therapy. So, what do THEY do to help??  Actually there are several activities and therapies that help.  For instance, Princess has an issue with loud noises, it is recommended that we get her headphones and play soothing music to drown out the offending noise, especially when we know it’s going to happen – such as when we vacuum the house, or blow the leaves off the driveway.  We haven’t tried this yet, but will.  It may allow her to process the vacuum or other noise at a level that is comfortable for her brain to process, while also rewarding the brain with noise that she likes.  Makes sense and something we will be trying. 

Another thing that seems to help is large motor activities – running, jumping, crawling, spinning, etc.  They aren’t exactly sure why this helps with SPD, but there is documented studies that show it does.  This is one of the reasons why Princess goes to the gym, where the class that she is in, her Occupational Therapist (OT) is there to observe and help the families they service.  Princess is not only running and jumping and physically active, they utilize lots of different equipment to offer exposure in a safe environment.  This leads us to the next therapy – exposure. Remember with Princess, she was under ‘house arrest’ for the first 14 months of her life, which was spent either in the hospital or in the house, due to RSV season.  She didn’t get exposed to being in a crowd, lots of the noises of the world.  This may have had an impact, but we also knew that RSV could have been deadly to her, if she had caught it. So, the plan is to expose Princess to as many things as we can, while keeping her from being overwhelmed and allowing her to feel safe.  Sounds easy, right??  Remember the grocery store and chocolate sauce??  If it’s not the norm, or what she’s used to, she reacts poorly, as she cannot process the change.  We will figure it out!! But obviously, a trip to Disneyland is NOT in our immediate future!

Remember many people with traumatic brain injuries (TBI), like stroke, have to be taught to walk again, or write again.  The brain is an amazing organ and has billions of neural pathways.  If we can find the correct therapies, perhaps we can help the brain to ‘re-wire’ itself or at a minimum, perhaps we can help Princess learn to compensate for her SPD.

Below are some of the therapies that we are either currently doing or will be doing, as money and/or training become available.  We have already researched these, discussed them with Princess’ therapists and/or they are being recommended:

·        The Wilbarger Deep Pressure and Proprioceptive Technique (DPPT) & Oral Tactile Technique (OTT), more information can be found HERE We will be starting this after training on Friday.

·        Gym Time, as many Friday’s as she can make with doctor appointments, and such.

·        Jumping Time at home – we have purchased a small trampoline.

·        Exercise Ball Time – again we have purchased this and are doing prescribed exercises on it.

·        Essential Oils – we are in process of learning and purchasing, but have already found a couple that seem to help – if you are interested in Essential Oils, let us know, we can hook you up and earn Princess free oils and a diffuser!

·        Therapeutic Horseback Riding – this will take some budgeting, unless CCS or our Regional Center decides to step up to the plate and pay for it.

·        Headphones and a child quality Mp3 player, this will again take some saving and budgeting.

·        Swinging – we purchased a toddler swing for the swing-set when Princess was a baby and liked to swing (now we know why!)

·        Sit and Spin – we’ve noticed that Princess likes to spin herself as a way of ‘stimming’ which is creating rhythmic motion that is soothing to her (many autistic children ‘stim’ by flapping their hands).  We will be budgeting and saving to get her this ‘toy’.

·        Weighted Blanket and later, perhaps a vest – again, something that we have to budget and save for.

·        Natural sound machine – another item to be purchased.

·        Child quality CD player that she can use to listen to music that soothes her. Another item to be purchased.

·        Soothing music that she picks out, again something to be purchased.

·        Clothes that she will wear – which right now is ‘skinny jeans’ (they are like leggings for women) and short sleeved tops.  No dresses, unless it is denim, nothing on her neck – which annoys her and nothing ‘scratchy’ which annoys her. Items are purchased as we find them, but of course they have to be specific to her ‘liking’.

·        Lots of going places for exposure – new parks, picnics, playgrounds, different stores, schools, and ideas are appreciated!!

·        Of course we will be keeping Princess in her pre-school, which again we have had to budget for, as the insurance, school district, etc. will not pay for this particular pre-school, which we think, right now, is the best fit for her. (Next year, she may be attending the special needs preschool, depending upon how she assess for the school district after the first of the year. This will obviously be looked into like any other new day care/pre-school setting, as it has to meet her needs.)

As you can see, many of these things either need to be purchased or are ongoing expenses, which we need to figure out how they fit in the budget.  We will continue to try to do everything we can to help Princess and we will make it work!  If you’d like more information about CP or SPD, I’d encourage you to visit the links below:

CerebralPalsy.org

United Cerebral Palsy

SPD Foundation

Sensory Processing Disorder

GUEST POST: MeMe Tells About Princess's New Diagnosis

This post is written by Little Man and Princess's grandmother, MeMe. She is my mother. On Friday, Princess was given a diagnosis of Cerebral Palsy (CP) by Dr. D at Shriner's. This is MeMe's words about it. She's suspected all along that Princess had CP, we just had to get past the "it's a preemie thing" for anyone to listen.

I’ve had people ask me in the few days since Princess’s diagnosis of Cerebral Palsy, why it was suspected, she seems so ‘normal’. I thought I’d ask to do a guest post on her blog to tell you. Perhaps it will help someone else as well.

As you may know, Princess was a 28 week preemie, just like her mother before her. I brought her mother home when she was just 6 weeks old and weighed a mere 3 lbs. I have some familiarity of preemies. I noticed within the first 3 or 4 times that I saw Princess that something wasn’t ‘right’. When she was in her incubator, and she would move around, her little legs and arms would twitch, especially when it was purposeful movement.  If it was a reflex, for example, you tickled her foot, there was no twitching. But if she was stretching, she would twitch.  Her eyes would also flutter – her eye balls themselves.  I was told by the NICU nurses that this was a ‘normal’ preemie thing.

When Princess came home and then came up to live with us with her mother and brother, I continued to notice the twitching of the legs and arms, but less so with her eyes. What I began to notice however, was an issue with fabrics. Princess would only sleep in her bed if the sheet was soft – like flannel or later on fleece. While in the pack n play, it was easy to put a flannel receiving blanket under her, so she could ‘touch’ the flannel with her face, or whatever body part was unclothed. Later when we moved her to a crib, it became harder, as she moved more, to keep the flannel under her and as a result, she ended up sleeping most nights with her mother, on flannel sheets – that is until I made a connection and found a fleece sheet.

When Princess was learning to reach for things she wouldn’t cross her left hand over her midline. Meaning if you offered the toy at the middle of her body, she would never reach for it with her left hand, only her right. If I restrained her right hand, she would use her left, but then her arm muscles would twitch. When I pointed this out to the Developmental Therapist, again I was told – ‘normal’ for a preemie. Ummm, no.

Princess’s mother was faithful in doing the exercises prescribed and even made a game out of them – toes to the nose, bicycle legs, etc.  I would often sit and watch and I noticed that Princess seemed to have normal flexibility on her right side, but her left side seemed stiff to watch – harder to move, if you will.

It was about at this time, maybe 6-8 months of age, that we noticed loud noises bothered her. Although totally normal for a baby to startle when there was a loud noise, it’s not normal for a baby to get a 1-2 minute shutdown, where you could physically see by her face, which would go flaccid, that something wasn’t connecting – she still does this today. If the noise continued, just like today, this 6-8 month old baby would have a screaming fit and be totally inconsolable. She still does this today. We know now that it is sensory issues caused by the brain damage called Cerebral Palsy.

As Princess grew, it became apparent that she was going to be behind on those milestones you associate with a baby. She was always right on the cusp of the different therapists/doctors being concerned.  If they said she should be sitting up by 9 months or we will have to look into things, she would sit up unsupported at 9 months 4 days. It was the same with crawling and walking, she was always right on that cusp of creating concern. What I did notice however, was that as she learned to stand and/or you put her in her walker, her left leg would seem to collapse on her. When she was cruising the furniture, she fell many, many times and 95% of those times, it was because her left leg just gave out. I quit mentioning my concerns, as they were either met with ‘it’s normal’ or ‘they don’t seem concerned’. But I knew something wasn’t right.

Meanwhile, what we now know are sensory issues, continued and continued to seemingly get worse. Noise bothered her, but also being barefoot and having her feet touch the grass, caused a complete meltdown.

Once Princess started walking, she began toeing in pretty significantly on her left foot. It raised the concern of her Developmental Therapist and later, the NICU follow-up clinic, which ended up referring her to Shriners for an evaluation. I was able to accompany the kids to Shriners  for that evaluation and that’s when we first heard that her reflexes on her left leg and arm were a little too easy to solicit.  I asked the Doctor, why??  His response stunned me into silence….’it could be Cerebral Palsy, but we will have her come back in 6 months, because maybe it’s a prematurity thing with walking’.

I began to research, something I have always loved to do – everything and anything concerning Cerebral Palsy – scholarly articles, the various organizations’ websites, blogs about other children with CP.  I learned enough to know that Sensory Processing Disorder often went along with Left Hemiplegia – seems the right side of the brain is where many of our senses are processed. I also watched Princess – closely…she still fell A LOT. Many times it’s because her left leg just gives out. She also started with leg pain – that made her cry.  At times she would tell us she couldn’t move her leg and it would feel to just be so tense and tight. Rubbing would help. Sensory-wise, as she was exposed to more things – story time at the library, Sunday school at church, etc. it became apparent that too many people created a sensory overload and Princess would shut down.  If not allowed to retreat to give her senses a chance to catch up, she would have a meltdown – often resulting in an inconsolable toddler for 2 or more hours.

Meanwhile, Princess’s mother was catching up to my thoughts and we had many discussions of what this meant and I sent her websites to read and explore.  We both became convinced that Princess had Mild Cerebral Palsy.  her mother consulted with the therapists, who couldn’t agree with us– as they cannot offer a diagnosis, but they would say ‘there is a problem’. Princess needs help and as she nears her third birthday, she will be timed out of her therapies unless we had a diagnosis that allowed them to continue. I told her mother to ask the therapists if they would write a letter to Shriners describing what they saw in Princess. The therapists did, very willingly, as they recognized that this child needs continued help and support.

This brings us to the visit to Shriners on Friday.  I wasn’t able to go, but as I understand it, once the doctor examined Princess, watched her walk and read the therapists' letters, he immediately came out with Left Hemiplegia. I think he knew, like I knew, all along, but wanted to believe ‘it was a preemie’ thing. It sounds like this doctor is going to be our biggest advocate going forward and I am so glad. He opted not to brace her left foot/leg at this time, as he feels there would be minimal compliance at this age, which I have to agree with – so we are going to see what progress we can make with Physical Therapy and we will see in 6 months where we are.

This still doesn’t answer the question of ‘how or when did this happen’. Truly we don’t know. It could have happened when she was born and the doctors took 4 or 5 minutes to get surfactant in her lungs and intubated, it could have happened when she went acidotic the 2 or 3 times, or when she developed the milk protein allergy. Bottom line is we don’t know when the brain damage occurred, we only know that it did and it is no one’s fault.  In the process of saving her life, Princess’s brain was injured.  Thankfully, it is a mild injury, as it could have been so much worse. It is NOT caused by her rare genetic condition, PHA2, as there is no incidence of it being even remotely related. It doesn’t matter at this point, how Princess’s brain got injured, it did and now we will find therapies that will help her become everything she was meant to be.

So where do we go from here?  This is a listing of what we have ordered, what we have done, or what we have plans to try:

• We currently have orders for Physical Therapy and Occupational Therapy. This will either be done by our Regional Center, whom we are already connected with, or the school district or the insurance.  It’s undetermined at this point who it will be through – but we have orders for it and I will make sure it happens.
• We have Princess in a Co-Op Preschool and for now, even though we are paying for it, she will stay there. Princess loves her school, loves her teacher and the classes are small and the director has a daughter with sensory issues, so she understands. Not to mention, she welcomes the therapists at the school. Her mom is not only allowed at the school, but because it is a co-op, she is required as a part of the membership, to be a ‘helper’ once a week. This allows her to see how Princess is doing first hand.
• At the recommendation of Princess’s Occupational Therapist and as a part of that therapy, Princess is going to ‘Gym’ once a week.  This is for large motor movement, which is so important for both the Left Hemiplegia and the sensory issues.
• We have started Aromatherapy with some mixed results. Our DoTerra consultant is wonderful. Currently ‘Tinky Nee’ gets frequent ‘showers of blue water’ which is Wild Orange Oil and a little water. This seems to keep Princess calm and has kept the meltdowns mostly at bay. We also find that Wild Orange oil will abate a meltdown. A small drop under Princess's nose allows her senses to refocus when in the midst of a meltdown. DoTerra’s blend called ‘Balance’ is used prior to school and gym and seems to help with the shutdowns and thus prevents meltdowns as well. We are working on a blend or oil for bedtime, as this girl does not like to go to sleep.
• We are going to look into therapeutic horseback riding and try to either get a referral or private pay for this.
• We have gotten an exercise trampoline, with a handle to help with large muscle coordination and to help Princess with learning to jump, something she still hasn’t mastered.
• We have also started back using her exercise ball to help keep her core strong.
• We have started the brushing and joint compression techniques and are awaiting more instruction. This is for the sensory issues.
• We are waiting for other suggestions, exercises, therapies that we can implement. 
• We are depending on God to continue to carry us, showing us what needs to be done to help this precious child of his.

We welcome your thoughts, prayers and suggestions on our journey.