If you're interested in the story of where we have been, read on, if not - it's here documented for us for the future. Someday we will look back on these days and all the details that fill our minds now will be a blur....this way we will be able to look back and remember all the details of this little miracle of ours and her diagnosis process. We will be able to clearly see God blessing us through this journey.
August 20, 2014 - 6 months old
Today was Meghan's six month check up. I don't remember her height and weight (there was a lot talked about and it just slipped my mind!). I do know that her growth was on track with her growth in the past.
She still struggles with getting good feeds - both in number of ounces and willingness to accept the bottle. At four months we talked about potential for failure to thrive and the doctor decided to see what she would do given another two months. While she isn't "failure to thrive" - she's maintaining her growth curve now, is meeting and exceeding milestones, and gives all appearances of being healthy - something does seem to be wrong.
The plan right now is: we will be having a consult with infant and toddler services (in home special education services before age 3) for potential OT (occupational therapy) and SLP (speech & language pathology) services and will be seen by a Childrens/KU/Olathe developmental teams for evaluation as soon as possible (which location is dependent on who can get us in first). If those appointments yield the information and support that we need we will move on from there. If they don't provide enough information or recommend further testing we will move on....potential other options are GI screenings, blood work, etc. The doctor wants to get a team of professionals with their eyes on Meghan helping to figure out how to help her with whatever is causing her eating difficulties.
At home we are doing all sorts of things - adding a vitamin supplement, working hard on the sippy cup for more liquid, playing in pureed solids, adding popsicles for liquid, trying new textures and types of solids, etc. Basically, lots of experiencing foods and textures and pushing any form of liquid she will accept.
We will see our doctor again in 6 weeks to update him on what has happened at evaluations, gather more information, talk about how things are going at home, and make sure her growth continues to go as expected.
I am very happy with where we are; with my special education experience, I know what we are getting into with these appointments and am excited for the potential help that these professionals can offer us!
September 3, 2014 - 6 months old
Meghan's evaluation with Infant and Toddler Services was today and they have decided that she does qualify for services in the area of OT/Self-Help Skills. A different feeding specialist (which the case manager thinks will be a great match to Meghan's personality) and the case manager from today will come out in the next one-two weeks to write an IFSP (a service plan for helping Meghan gain the skills she needs) and begin working with her. It was a big hour and a half, a lot was done and said, and this Mama is feeling really overwhelmed by it all. I think that we have a great plan in the works, but it's a scary road - even with my special education experience. We would appreciate continued prayers!
September 18, 2014 - 6 months old
Today we had Meghan's IFSP meeting and met her feeding therapist. I feel so good about what is going on - this therapist was amazing with Meghan and I think is going to do very good things with her!
October 16, 2014 - 7 months old
To start off...the therapist's name is Meghan Lee (sound similar to our Meghan Leigh?). After Meghan woke up from her nap (part way through our meeting), Meghan the OT laid on the floor and waited for Meghan to come to her to play. Meghan crawled to her quickly and enjoyed playing, smiling, and talking with her. It was a cute little match made in heaven!
Based on what I reported about Meghan's eating habits and the information gathered during her assessment, Meghan the OT had several thoughts for us:
1) She wants reflux to be reconsidered for Meghan. She sees so many signs of silent reflux and would like to have Meghan get some testing and/or start some meds to help.
2) She has ideas for helping Meghan "play" in solid foods. She said that Meghan definitely has some good skills for solids when considering how much she struggles with bottles. She will continue to monitor and help us through the process of transitioning to solids.
3) We are going to play with helping Meghan eat 4 meals a day of less formula than her typical 3 meals a day. What I love about this therapist is that she offers something to try but always says "If it doesn't work, don't do it!" She trusts us as the parents to be the experts on Meghan!
We wrote two goals for Meghan to be monitored each time we meet with Meghan the OT:
1) To eat in dark rooms other than her bedroom. (i.e. dark room at church, dark room at someone else's house). Meghan is very alert and very aware of what is going on around her and so it was determined that dark rooms (rather than anywhere/everywhere) were an acceptable place for taking the bottle - but flexibility in which dark room would be WONDERFUL!!
2) To pursue a medical diagnosis to help explain her feeding aversions. Or to determine that there are not medical causes and to create a new goal on overcoming the aversion to the bottle.
Steps coming up in the next few weeks:
1) We have two feed therapy appointments scheduled for the next two weeks.
2) We will see her pediatrician again on October 1st.
3) We will be seen at Children's Mercy OT-Feeding clinic on October 6th.
Hopefully between the Children's Mercy appointment an the pediatrician appointment, we will be able to gather information necessary to determine if there is a biological cause of her aversion and/or if seeing a gastrointestinal doctor would be beneficial for Meghan.
Like I said earlier, I feel very good about this therapist working with Meghan! I think we are getting to be in a better place just by having her working alongside of us! I will send another update down the road once we know more!
October 17, 2014 - 7 months old
We had Meghan's Occupational Therapy evaluation at Children's Mercy yesterday. She qualified to continue receiving services through their OT department and we will be returning in 8 weeks to check on her skill progression; we were given a list of exercises and skill work to do with her at home. While Meghan's tongue tie was clipped in the hospital before we were discharged she still struggles with using her tongue appropriately. She does not stick it out of her mouth or use it to move food laterally (across from cheek to cheek) within her mouth. This effects her ability to take bottles (she isn't sucking correctly and thus has to breathe really hard in an effort to take the bottle), explains why she was unable to nurse effectively, and predicts that she will likely struggle with solid foods that do not dissolve in her mouth and with the development of speech sounds which involve movement of the tongue.
We were also recommended to have a full sensory profile done on her; she has a Sensory Processing Disorder - something I have thought and something I have been doing some interventions for. More evaluation would help us determine where the problem stems from - proprioceptive sense (sense of where the body is in relation to the space around it), vestibular sense (sense of balance and gravitational security), or both. She definitely has some struggles with propioceptive, and I am guessing vestibular as well. These are issues and interventions that I KNOW WELL from my work in the schools and there are many activities, interventions, and resources that I already know. We are looking at working a sensory diet (different activities to help her body understand the world around her and her relation to it - which then provides her with greater comfort and confidence) throughout her day.
We see our feeding therapist tomorrow and will talk to her about the results of her OT evaluation at Children's Mercy and she can help me with working the different exercises and activities into Meghan's day.
(Terminology is getting intense around here - if you have any questions or want to know more about all of the above - let me know. We are definitely finding that God was very intentional in placing Meghan in this home. So many of her difficulties and traits are things I know very well from my experience in teaching kiddos with autism. She is not being considered for autism - but teaching those boys taught me a WHOLE LOT about how the sensory system works and how it (as is the case with Meghan) doesn't work for some kids. We are seeing now how God orchestrated my job the last five years to prepare me to be the Mama of this special little girl!)
When Meghan was at her regular doctor's office last week he started her on Zantac to start treating the suspected silent reflux. We are thrilled to report that it seems to be helping her drastically so far! She has been taking more ounces in a day than before, fussing less, and even starting to feed herself the bottle while we are walking to her bedroom. This is a stark contrast to the baby who would cry at the very sight of the bottle! There is lots of "good job Meghan" and "thank you Jesus" going on after each bottle!!
October 8, 2014 - 7 months old -
Further Description of the Proprioceptive Sense
(Note: I am not a doctor. This is just my understanding.)
People actually have 7 senses: hearing, sight, smell, touch, taste, proprioception, and vestibular. Sensory processing disorder can effect any of these senses, and to a degree most people have some sensory processing differences from each other: whether you can/can't handle spicy food, how bright of light you can tolerate/prefer, how loud you like noises/whether loud noises freak you out, etc. Sensory processing disorder is when the way your body processes one or more of these senses is outside of the normal range of behaviors and planned interventions would be helpful in allowing your brain (subconsciously) to feel more calm.
Back to the 7 senses - Proprioception and vestibular senses are basically controlled subconsciously. Proprioception is messages sent between muscles/joints and the brain basically assuring the brain that all of the body parts are in their place and doing well. If you stub your toe your brain is fully aware of your toe because of pain; proprioception is what makes the brain aware of your toe when it's not in pain. If your proprioceptivesystem isn't working quite right it's like when you have a problem in your personal life and you are trying to focus on work - your brain, while trying to engage in your work, is just a bit distracted. If the proprioceptive system isn't sending enough information, part of the brain is (subconsciously) just a bit distracted.
So for Meghan (and for me, because I am this way as well) subconsciously our brains are not always completely aware of where all of our body parts are compared to the world around us. It's not that we can't feel them or that we couldn't move them if we want to move them - it's just that the joints and muscles need to send more messages, more often to the brain. So, we subconsciously or through planned experiences (more on that in a bit) do things to give our brains more input than is typically needed by most people. This is why some kids will rock in their chairs, tap their feet, tap their pencil, wiggle, etc....they are just giving their brain more information about where their body is (and this is all done without the child actively needing to think about it).
What can be done to prevent some of these less than ideal situations (ie. wiggling in chair at school) would be to plan in experiences that give the brain extra input without being disruptive. This is called deep pressure or heavy work. So, I wear a tight tank top almost everyday. It gives the core of my body just the slightest bit of pressure which then allows that part of my brain to not have to work any harder than any other persons brain to "know" where my body is. What we've noticed about Meghan since she was super little, and have worked to help her with already before her diagnosis, was that she seeks movement - particularly any movement that puts more "pressure" on her joints and muscles. Being swaddled as a newborn gave her muscles just the slightest bit of "deep pressure" that allowed her brain to know exactly where her body was. Bouncing on a ball put more pressure on her joints while she was bounced, jumping in her jumperoo gives great pressure through her legs, crawling and laying on her tummy put slight pressure on her core muscles that sends messages to her brain. Again, this is all completely subconscious.
So, having sensory processing disorder doesn't mean that Meghan actively doesn't know where her body is or that she is delayed in gross or fine motor skills (in fact, she is advanced in these skills!). It just means that (for her) she needs extra input for her brain to be at the neutral state of knowing what's going on with all of the parts of her body. The cool thing about this (while it's hard to wrap your mind around this all, working with these kiddos is so fascinating - working with sensory systems of kiddos was one of my favorite parts of my job!) is that we can do things that help give Meghan's body extra input for a short period of time that will then put her brain into a calm place - where it knows exactly what is going on in her whole body - so that she does not need to constantly seek input in ways like a student who taps his foot or wiggles in the chair. We can create whats called a "sensory diet" which is a plan for activities throughout the day that give her body extra input - and that extra burst of input will "last" for several minutes to several hours.
Things we would do to help her (our feeding therapist - an Occupation Therapist - and I are going to be working through a questionnaire type tool to determine which things Meghan needs) would include: bouncing in her jumperoo, bouncing/rolling on an exercise ball, laying under a heavy blanket or a blanket with the slightest bit of weight added to it, pulling on stretchy ropes/lycra (when she's older), being swung in a swing that cradles her body - all of these things give her body a little bit of pressure or weight and the results from a few minutes of intense extra input from her muscles will calm that part of her brain for an extended period of time. It's so cool to watch a kid experience that shift!
Hopefully that has cleared up some confusion - it's a complex thing to wrap your mind around because for most people that proprioceptive sense is a sense that you never give a second thought to. It doesn't indicate any kind of cognitive delay (or any delay - just a difference) at all - it just indicates that we need to be sensitive in making sure Meghan gets the sensory experiences that she needs in her days.
After her feeding therapist and I work through the questionnaire tool, we will have a very full, accurate picture of what Meghan's needs are in all seven senses and be able to plan more for her days.
Here's the video I mentioned at the beginning of this email; my only caveat with sending it is - remember that the thought processes they describe are all subconscious - her brain is not constantly interrupting her play to say "Hey, where's my foot?" Thinking about the proprioceptive system gives a whole new way of thinking about people who tend to "fidget" - they may have a legitimate need to do so and may be the people in the room (at a lecture or business meeting) who are listening the best :)
Meghan had her appointment with the GI on Tuesday. She did very well at the appointment - she's becoming a pretty flexible little girl in waiting rooms and with people poking and prodding her as we go to more and more appointments.
The GI confirmed that she has silent reflux and that she's been in pretty severe pain for months. Her throat even has burns from the reflux. Based on his evaluation that day, he believes that treating the reflux is all that we need to do from a GI standpoint. He does not suspect allergies, lower GI track problems, etc.
He and I talked about celiac disease - he recommended keeping her gluten free until at least 2 years old to help prevent her from having more problems impacting her ability to learn to eat. He said at that point it will be our choice whether we test her or just assume that she inherited celiac. It was helpful to talk to an expert about something I have been working to research for the last year or so.
He changed her medication for the reflux - she is now on Prilosec which works differently and also has the ability to heal the damage done by the reflux up until now. After a mess of phone calls between myself, the pharmacy, and our insurance company to get the prescription filled - Meghan and I were able to pick it up today. We shall see how this helps her in the next few weeks. We are hopeful that since we started seeing changes with the Zantac, that we will see even more progress as this medicine takes effect for her!
We see her pediatrician next week to coordinate all of the information we have received into a working plan/single medical file for her. From here on out he will be responsible for managing her medication (unless there are any major changes or complications with the medicine or worsening symptoms) and the hope is that she will be able to be worked off of the meds in the coming months.
Click Here for an Update on Meghan's Progress
Click here for the results of Meghan's Sensory Profile Assessment.
Click Here for an Update on Meghan's Progress
Click here for the results of Meghan's Sensory Profile Assessment.
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