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.
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