Toofies!

The decimater has completely broken through the gum and the annihilator is almost broken through! Ask Daddy why he named them that way.....his nose understands how those little guys are able to break through the gum - they are sharp!

Everyday Playing Videos

I'm trying to take more video of Meghan - I love looking back at the everyday moments that we captured of her when she was super small. I miss those jerky arm and leg movements of a 2 month old unwrapped from her swaddle blanket. I miss the just staring at the fan and the little noises and squeaks that little bitty ones make. All those sweet little things that were just the everyday at the time. So, a few days ago, I took video of Meghan at play. It's just everyday stuff. But someday, I will miss these things so much - and we will have these videos to go back and watch!

She is not usually this quiet - usually she talks up a storm while playing. But, when she sees the video camera, she gets super quiet!

Meghan Update

All of her appointments, therapies, and hard work are paying off for Meghan. Here are some awesome updates recently for her:

• She has been taking her bottles in the family room! She lays under her weighted blanket and sucks away happily. For the most part, she continues to use her entire jaw/breathing method of taking the bottle, but I have noted her try to use her tongue periodically. 
• When she is hungry, she will crawl to the area of the family room where I typically feed her. If I tell her it's not bottle time, she will crawl to her high chair! 
• She love eating "puff" snacks. We store them in a snack cup in her diaper bag when we go out. I was feeding them to her while shopping at Costco when we hit an aisle where I needed several things. She pulled the snack cup out of her diaper bag and handed it to me! 
• Since her tooth has come in, we have started brushing her teeth. She loves the flavor of her toothpaste and will move her tongue around in her mouth to follow it and has stuck her tongue out a few times while we brush. 
• Meghan happily chews on chewy sticks and other therapy tools - she puts them in the side of her mouth and uses them to encourage her tongue to move - she is doing therapy on herself :) 
• Meghan will sometimes just crawl to her weighted blanket, pat it, and look for one of us to cover her up - she is beginning to indicate when she needs help meeting her sensory needs! 
• When Meghan is eating solids and begins to gag (she does this more than most babies as a result of her tongue) I have started to put my arm in the air and say "chew chew" like when you imitate a train. Now when she is gagging, she will put her own arm/s in the air and make a similar motion. So cute! 

And some non-food related excitement:

• Meghan can move herself wherever she wants to go on the first floor - she can move between the family room, the playroom, and the magnets on the fridge to play.
• Meghan is pulling herself up on shelves in her playroom to get toys or books she wants. 
• She remembers where toys are stored and goes to find the ones that she wants. She will set out across the room, pull a basket down, and play with the toys inside. (For example - while playing at the floor vent, she will crawl to her animals, pull down the basket, pull out a few animals, and crawl with them back to the air vent to pat them and make more sound.)

We are so proud of our big girl! Talking with her feeding therapist, doctor, and Daddy we've said that month seven to eight is a big transition for kids in general - and we are blown away by the way Meghan didn't just make those transitions - she caught up on so many skills as well! What a precious miracle to watch unfolding in this little girl's life!!

Meghan's Struggles

Since Meghan's 6 month appointment, we have been on a journey to help our baby girl. She struggles with feeds. A lot. While she was able to maintain her spot on the growth curve, something was definitely wrong. Our doctor started us on a journey to figure out baby girl through appointments with a variety of specialists. After each appointment, I sent an email to our parents, a few friends, and a couple who would proudly claim her as their granddaughter if only her grandparents would let them :) Now that we have been to several appointments and Meghan is getting services & therapy,  I am putting all of those emails together here with dates. 

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! 

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 :) 

https://www.youtube.com/watch?v=b2iOliN3fAE&list=WL&index=4

October 16, 2014 - 7 months old

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.

Meghan's Struggles

Since Meghan's 6 month appointment, we have been on a journey to help our baby girl. She struggles with feeds. A lot. While she was able to maintain her spot on the growth curve, something was definitely wrong. Our doctor started us on a journey to figure out baby girl through appointments with a variety of specialists. After each appointment, I sent an email to our parents, a few friends, and a couple who would proudly claim her as their granddaughter if only her grandparents would let them :) Now that we have been to several appointments and Meghan is getting services & therapy,  I am putting all of those emails together here with dates. 

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! 

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 :) 

https://www.youtube.com/watch?v=b2iOliN3fAE&list=WL&index=4

October 16, 2014 - 7 months old

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.

Dinner Last Night

I love watching these two at dinner time - they have a blast spending time together. Meghan enjoys trying new foods. Daddy enjoys sharing them with her. They both enjoy each other's company.

I often hear giggles. 

I love listening to it. 

I love watching it. 

Last night we served Meghan: egg yolk, yogurt, pears, banana, sweet potato, and green beans....she loved the green beans: 

She held the bean there for a long time - refusing to allow Daddy to remove it and just smiling at him! She may have gotten his stubborn streak! In the end she sucked all of the inner part out of the green bean leaving just the skin that was too tricky to eat! 

Dear Meghan :: 8 Months

Dear Sweet Meghan,

What a two months it has been! You have undergone such an amazing transformation in the last two months - partially because of some medical tests/changes and partially because you are just growing into an amazing person. Your Daddy and I say often that we are so grateful that we get to have you - God sure did give us an amazing blessing in his gift of you to us.

You continue to sleep a solid 11-12 hours at night and nap 2-4 hours per day. You are continuing to extend your waketimes, and I love that time spent with you! We get to play, eat, go on walks, sing, dance, play with friends, etc. You are just a blast to hang out with!

Your diapers have not changed since 6 months: you are wearing cloth diapers at the second or third rise level depending on whether they are the old style or new style of diapers. When you wear disposables - which you do at night - you wear a size 3.

You now wear 12 and 18 month clothes. You are still a very tall kiddo and most of that height is in your trunk. If I am going to put you in a onesie, it has to be 18 months! You have just now moved into 12 month pants (they are still a little bit too big, but cloth diapers help with that) while you have been wearing 12 month shirts for several months. I think you're gonna keep me on my toes when trying to figure out what size of shirt vs. pants you wear as you grow up. You get your torso-to-legs proportions from your Daddy - you are the opposite of me!

Your chunkiest body part continues to be your thighs.You still have little rolls in your arms and a bit of a muffin top; I think you have more muffin top this month than last month. This is AWESOME as weight gain has been difficult as has eating. The last two months have been a journey with eating....

At your 6 month doctor's appointment, he decided it was time to act on your eating difficulties. I will write another post about all of the testing that has been done but the short version is that in the past two months you have been evaluated by Infant and Toddler services, Children's Mercy OT, and Children's Mercy GI. You are now receiving services for feeding from ITS and Children's Mercy. They are working on helping you with your sensory system, your bottle eating, your solids eating, and proper tongue movement. We are amazed with the improvements you have made in the last two months!! We are so very proud of you!!

You were diagnosed as having silent reflux. Your poor throat is burned and you fear the bottle because it's been such a source of pain - I had suspected this for a long time, but you weren't a "spitter", were a very happy baby, and maintained consistent growth on your curve so it definitely hid well. We started you on medicine and you have become a whole new eater!

For the last week you have taken your bottles in the family room. You lay on the floor, under your weighted blanket, often with Frozen or Baby Signing Time on, and happily drink until you are full. Then I sit you up, put your weighted blanket on your lap, and we watch some more together to help you stay still for the milk to settle in your tummy. (I know, research says that you shouldn't let a kid watch tv before 2. But, for a kiddo who has fought so much - TV is a beneficial tool in helping her recover her trust of food and something fun to enjoy together while she sits still after eating.) You have been able to maintain eating despite my phone ringing and your Daddy being in the room and doing things. Before this, you had to be fed in your room, in the dark, after a long prep period, often after falling asleep, and nothing could interrupt your attention or the feed would not start again; you had trouble sucking the bottle because of your tongue and it hurt because of your reflux. Starting to heal those two issues has produced wonderful results. Are you a "typical" feeder? No way! Are we so proud of how far you have come? ABSOLUTELY!

You have also started eating solids. Sometimes you enjoy feeding yourself purees, though you have figured out that solids fill your tummy, and are often willing to let me feed purees to you so that they get in your mouth faster! For the most part we do Baby Led Weaning with you. We put food on your plate and let you choose what and how much you will eat. We do pick things that are hard for you to hold up and offer them to you - letting you choose whether or not to eat it by pulling our hand to your mouth or not. This time with you is so fun! You love exploring foods! You have tried so many more foods than most babies your age have - and you sure have some favorites! Your favorites are: cheddar cheese, avocado, mango, twice baked potatoes, ham, pears, banana yogurt, bananas, mum-mums, and baby "puffs".

You have also mastered drinking from a straw sippy cup! We introduced it to you with a cup recommended by your feeding therapist that allows Mama or Daddy to pump water into the straw so that it gave you immediate feedback - within a few days you were independently sucking the water!

Motor Skills: this is an area where you have EXPLODED in skills the past two months. You now crawl on your hands and knees on carpet and hard floors, move from sitting to crawling position, move from crawling position to sitting, and are starting to pull up on things. When I hold your hands you take steps on carpet. With this explosion of motor skills you have become a very independent player. You will now happily play in your play room for 20+ minutes when given several toy options. You love playing with your Little People, your gertie ball, your cloth ball, board books, the bilibo, and your wedgits in the playroom. You are very into playing with your baby doll (Maizy) as well.

You have officially been diagnosed as having sensory integration difficulties. This finally confirms what I have thought - you are a sensory seeker! You continue to love your jumperoo/doorway jumper, swinging, and bouncing. We are working to add sensory into your day in a structured way; we have purchased several tools to help you with your sensory system. It's exciting to be able to use some of the information I learned while teaching to help you through your days. It's awesome to see you, when you are having a tough time managing life, crawl over to your weighted blanket. With that extra sensory, you are able to calm down; often times all you need is to lay under your weighted blanket and chew on a toy sometimes while also holding Mama's hand. It's awesome to be figuring out how to help you!

Whenever you see the carries you get excited - you still love being worn - though it's a very different experience than just a few months ago. You have grown so much and are very engaged in the world around us while in the carrier; you enjoy being worn when we go out but you are still able to find your calm place in them, as well.

At 6 months you were only making vowel sounds. You added /b/ and /m/ fairly soon afterwards. It wasn't until we started doing therapy to help your tongue learn that it could move that you started adding other sounds. You now also say /d/ and /n/. You say "mam" or "mama" when you want or need something. And "dadada" throughout the day.

You definitely know that Daddy is "dada". You get excited when the phone rings in the afternoon and you look around for Daddy when I say the word "Dada."

You still love music! We listen to a lot of music during the day. You know how to make your Little People zoo make music - and you wiggle your hips and tap your feet when it does. You LOVE going to church; you enjoy singing along, sometimes quite loud! We love that you are learning to worship and pray that as time goes on that time will come to mean so much more to you as you come to know our Lord personally.

You love unlacing shoelaces. You love cords; you understand the meaning of the word "no" because of this love and generally will obey. You love the floor vents. And, you love crawling behind the couches.

Your face lights up when we enter the garage - you know we are going for a walk or to go somewhere in the car. You love both. When we run errands you smile at the people who pass us - you often talk to them as well. You light up the world around you; I am positive already that God has big plans for your life. One of our friends commented, upon seeing you at church yesterday "I love that she's in her default state of smiling." You are so joyful and that joy just spills over into the lives of others around you -- and you are only 8 months old!

The past two months have been very busy and full of appointments and therapy for you - and that may very likely continue for some time. But you are worth every mile and every minute. Meghan, you're an amazing kid! Sometimes I feel like I need to pinch myself to be sure this is real life - it's just so good.

You have changed me - some people fear that they will lose themselves in parenthood, you didn't cause me to lose myself at all - you have pushed me towards a deeper faith, a more consuming understanding of love (for you, your daddy, the people around us, and for our God), and stronger character. For those things, I am so thankful.

Meghan Leigh - I love you. I love being your Mama. I love spending my days with you. I love watching you grow. I love cuddling with you. I love hearing you laugh. I love seeing you smile. I love you through and through. Happy 8 months, dear.

Love,
Mama

8 Month Old Pictures

When the World is Too Much

When the world is just too much for Meghan, we are learning how to help her calm. If her weighted blanket is on the floor, she will often crawl to it. If it is not, I will get it for her. Lay her down underneath the slight weight, give her something to chew on, and often times sit with her and hold her hand - within a few minutes her little body will start to relax and a sense of calm will return. She's working on transitioning from 3 naps to 2 naps a day and this system is very helpful in the evenings when she is tired and overwhelmed. 

Recent Sleeping Pictures

Meghan often plays with her hair before falling asleep....reminds me of her Uncle Zachary!

The next day she seems to have chosen to practice yoga rather than napping :) 

Recent Sleeping Pictures

Meghan often plays with her hair before falling asleep....reminds me of her Uncle Zachary!

The next day she seems to have chosen to practice yoga rather than napping :) 

Pictures from Today

This morning we were up and on the road at around 7:00 to head for Meghan's gastroentology appointment at Children's Mercy. She was looking so super cute, but was tired....

Gah! She's so cute!!

Her appointment began at the time her nap would have begun....she took a great nap on the way home :) She didn't wake up even after I parked, opened the door, and snapped this picture. She eventually did wake up to play and then she did this....

Woah! Baby girl....slow down....you're growing up so fast!

Dinner Last Night

Meghan seemed to enjoy dinner last night. First - she let me feed her an ounce of avocado off of a spoon. She usually likes to spoon feed herself, but she has discovered that solid food fills her up like bottles do and that Mama is faster at getting the spoon stuff in her mouth. Then she ate her banana sliver, part of a beef stick, and loved gnawing on a green pepper. She thinks green peppers are super yummy!!

October 13th - Some Sweet Pictures

Her hair is getting so very long! She has started doing this cheesy, awkward smile when the camera comes out.

So happy while crawling!

Animal Pat-Pat

Meghan loves playing with the floor vents because they are different than other flooring textures. A few days ago, she brought a few of her wooden animals over to the floor vents and listened to them pat-pat a different noise on her floor vent than just her hand. This girl is smart! And she loves to explore!

Double Fisting Dinner

Meghan does baby led weaning - we put food on her plate and she chooses what to eat and how much to eat. It's an important part of giving her independence and helping her mouth (which has not developed as expected - thus all the therapy) to move thing from front to back, side to side, and develop the oral skills necessary to take her bottles and to eventually eat her solid food for her necessary nutrient intake. 

We love baby led weaning because she has so much fun!! This night she was LOVING homemade chicken nuggets and tater tots!!

On a Walk

We went on a walk on a sunny day last week. We were hoping there would be some swings at our neighborhood park, but there were not :(

Baby girl was so super smiley, chatty, and just enjoyed our time out in the sunshine!

On a Walk

We went on a walk on a sunny day last week. We were hoping there would be some swings at our neighborhood park, but there were not :(

Baby girl was so super smiley, chatty, and just enjoyed our time out in the sunshine!

OT Evaluation

On October 6th, Meghan was evaluated at Children's Mercy for OT services. We found out a lot of information that day, and I will eventually be posting all of it, but before we left she was so super smiley:

OT Evaluation

On October 6th, Meghan was evaluated at Children's Mercy for OT services. We found out a lot of information that day, and I will eventually be posting all of it, but before we left she was so super smiley:

Wake Up, Daddy!

On October 5th, Meghan woke up from a GOOD nap and decided that Daddy needed to get up too :)

Stuck!

Meghan has tried crawling into the exersaucer bottom several times. Tonight she made it and then cried because she was stuck!

(It was almost bedtime!)

Peek A Boo

I see you!

Crawling for Real!

Today Meghan just started picking up her hands while crawling - and she found that it is quite a bit faster than her former inchworm crawling :)

Farming

Meghan enjoyed playing in her almost finished playroom today - she did some farming for around 30 minutes!

Happy Fall, Ya'll!

First Flu

No sweet pictures the past two days....yesterday when Meghan woke up from her morning nap, she started vomiting. And it just kept coming for 30 minutes. It was AWFUL to watch her feel so awful.

We took her to her doctor and he confirmed flu and gave us some guidelines for re-hydrating her. Poor girl was so miserable.

The positive side - she actually was crying FOR bottles. As we were re-hydrating her, we were offering 5 ml every 10 minutes for an hour. After giving her the syringe of milk, she would hold it tight and suck as hard as possible, not wanting to give it back to me and then fuss until she could have more. She seemed to be feeling much better by the end of today....

....Cole brought her into the kitchen while I was working on some prep for dinner and she reached out and took a cilantro leaf from the pile I was getting ready to cut. Apparently she is ready to have her solid foods back! She ended up being unable to swallow it, but seemed to enjoy the flavor - a girl after my own heart!!