Jenna had a trying day today with GI issues. She has had chronic constipation since she was a baby. Unfortunately, the high calorie formula that she and Blake had to have due to their extreme low birth weight can cause constipation....especially for a GI system that is under-developed. After years of having chronic constipation and not receiving effective treatment for it, she (they, actually) faces another condition-encopresis. I won't go into detail about that today but basically, she with-holds out of fear of the pain associated with having a BM which causes a slew of issues.
Jenna woke up a bit "off" today. It was clear early this morning that her nervous system/sensory system was out of sync more so than usual. She was more sensitive to touch yet wanted a lot of deep pressure, especially on her head. She took my hands and covered her ears, she took my hands and covered her eyes, and she partook in her "with-holding" behaviors. She was excited to get the the Floortime Center and was ready to go back as soon as we got there. We met with John first (Vision) and tried to get her started with various things. It was harder today for her to really involve herself in any one activity for more than a couple minutes due to the discomfort, anxiety and feeling the "need" to with-hold. Imagine a small child who is being potty trained but goes and hides to do his business. Only with Jenna, her body is giving her the signals but her memories are keeping her in a fearful place so she does all she can to NOT go. She did do some great things with her vision therapy, even if it was short-lived today. She worked on expanding her use of vision outside her arms'-reach. She practiced more visual discrimination at distances too as well as tracking at a distance for a longer amount of time. With her extremely limited diet, the GI stress cycle goes on and on. She eats mostly carbs..... fries and nuggets, pancakes..crackers, Goldfish, Nilla Wafers..an occasional apple. She drinks milk, apple juice, and water. That is all.....yes, no joke. It is not a matter of a child being picky. It is a matter of what her nervous system and body "allows" her to eat. She not only has oral tactile defensiveness....common with babies who were intubated for a long period of time (breathed by means of a ventilator/tube down throat), was fed via feeding tube, etc. She also has the challenge of poor oral motor planning (as a result of the damaged area caused by her brain hemorrhage)and proprioceptive and vestibular challenges. Basically this means that there are lots of textures that she cannot feel in her mouth. She eats crunchy food because she can actually feel it in her mouth and these type of starchy foods when mixed with saliva, will form the needed ball-like formation that will be easily swallowed. Foods such as meats required motor planning and muscle control in your mouth so that it can be manipulated into the formation needed before it is swallowed. Jenna's oral motor planning is an area that is weak. This poor muscle motor planning/control is exemplified by her learning to drink from a straw JUST this week. We all know that those carbs turn into sugar which in turn feeds into that chronic constipation. We've seen GI doctors. We've always been told to give Miralax. Well after years of Miralax and no resolve we finally found a specialist that told us that she was so impacted that Miralax would not be able to do the trick at any amount given. It is good for day to day help but when you are impacted, it does nothing but create another very ugly situation (that is actually a bit too real for me to want to get into right now). Anyways..... These GI issues stood in the way of a lot of progress today. Jenna tried so, so hard to keep with the plan and tried so many ways to get past the discomfort. Unfortunately, she was just too uncomfortable and we all decided it would be best to cut today's session short and that we needed to go "home" and give her an enema. I will say one thing about that.....she is PHENOMENALLY strong! This is no small task and I hate every bit of the process. It did not fully work but did relieve some discomfort.
This is where the raw part of my blogging comes in. As a mom, most everyone experiences mommy guilt. Sometimes for good reason and sometimes not. I would say this time it is for good reason. I wish I had been able to find a doctor that would really listen to me about her GI problems earlier on. Why the hell after nearly six years of chronic constipation and no real relief...never experiencing a regular BM....after exhibiting such behaviors of extreme with-holding, would none of them do something more than tell me to give her cap fulls of Miralax, to have her sit on the potty (duh!)and to have her try new foods. Yes, I do put some responsibility of this situation on the "specialists" that I saw....should they not have identified a larger issue here? Should they not have taken the whole child into account...history, special needs, diet issues, everything? I fought...I asked over and over, I took her for more opinions, I read, I researched. I tried the things they suggested. I also put too much faith into "specialists" hands that were not "seeing" Jenna's GI issue as something other than a minor issue. I did insist on answers, alternatives and tests. I did get turned away with "give more Miralax" and "give 5 enemas a day-I refused to do the latter. I feel terrible though, seeing Jenna suffer so much with these GI issues and seeing how it effects her life on a nearly daily basis and not being able to find her the help that could have prevented her some of that discourse. I should not have trusted others, I should have better listened to my gut and fought even harder. Well, I am just ranting now. No real clear thoughts are being formed after a day of having to make Jenna experience such an unpleasant task.
Back to the clinic....after our time with John, we met Lindsey....our OT. She was soooo amazing with Jenna...so compassionate, patient and warm. Jenna took to her pretty quickly even through the pain she was experiencing. Lindsey spoke to me about the diet/GI/feeding issues and she gave me some great advice. I look forward to Jenna working with her tomorrow. Jenna, like a champ, pulled herself together nicely and requested a nice evening walk.....a very long, peaceful walk hand in hand with mommy and daddy.
Thursday, June 18, 2015
Wednesday, June 17, 2015
Jenna Got Dizzy!!!!!!
Tuesday, June 16, 2015
Day 2-Floortime and Vision Therapy
Jason did much of the floortime therapy with Jenna today as Jake guided us and gave us pointers, suggestions and tips. Throughout today's session, Jenna remained connected in both verbal and non-verbal communication much better and for longer exchanges. She is a quick learner so this with her determination lend for perfect recipe for success. When she saw Jake today, she greeted him with a smile and reached for his hand as if to say, "Let's get started, Buddy". We started in the motor room, which she was very happy about. Jason did a fantastic job facilitating this model and adjusting when needed as he carefully read her cues.
Floortime is actually, quite a dance that no two people ever dance the same way. That is not what floortime is. There is not ONE way or one set of specific steps. It is about following the basics but letting the natural flow of communication take its course. It is learning how to identify the intricate and slightest sharing of communication and building upon what is there. It is changing paths ever so slightly to present just the right amount of challenge in order to facilitate communication problem solving. You must be or get in-tune with Jenna's attempts, both large and small. Any attempt IS purposeful and IS her reaching out in communication.
Jenna is learning to problem solve when it comes to communicating. Communicating her thoughts, needs and wants. What comes "normally" for the typically-wired brain is something that we are building in Jenna's. Once her brain has built and learned those pathways involving the continuous give and take process of communication, language will come. Once those pathways of communication comes, her world drastically changes. Today, we participated in helping those pathways be built. From the reaction and message that Jenna was sending us, she is so very happy about this. After our Floortime session, we met with John, Jenna's vision therapist. I am so impressed by how well she took to John. He is amazing with her and just had a presence about him that was warm, familiar, just the right amount of challenge and showed interested in being her playmate (the goal is to have Jenna engage in fun play THEN incorporate challenge/work). She participated in many games and activities that allowed him to gather information on how she is using her vision. In just today's session, he observed that she may have challenge with effectively using her peripheral and distance vision. He is going to further explore her vision behaviors, specifically in regards to divergence and binocular vision as well as tracking at a distance for longer periods of time. These are areas that he noticed some possible differences today. All in all, today was very productive. Jenna did a fantastic job, as she only had a 20 minute break. By the end though, she was pretty darn tired. I made an appointment with a local pedi who was recommended to us for pedi gastro issues. She is said to take a more holistic look at her patients. I am hoping she may help us in regards to Jenna's digestive issues. I feel that this is a major component in this puzzle of challenges.
This evening, Jason and I took Jenna for a walk around the neighborhood. We are staying in a basement apartment in Bethesda. It is beautiful in this area. It feels as if we are nestled in an old forest of gorgeous trees. We enjoyed the scenery and the variety of birds. There are fireflies EVERYWHERE. Every house has its own unique character and the yards are simply amazing. Jenna had a great time at the park that we stopped at. She is quite the trooper, as she kept requesting to continue our walk around the neighborhood even after we had been out for a while and it was dark. It is nearly 10 here and she is still not asleep.....this has been a little trying for us in that she is staying in the same room with us so these late nights of her being up right up until we fall asleep is starting to take a toll. Case in point? She JUST walked into the room with TWO bottles of Nestle chocolate syrup. Girllllll.....step away from the chocolate mix and for the love of all sanity left in my tired brain.....go to sleep! sigh......... Love this girl........
Monday, June 15, 2015
Day one of Floortime with Jake Greenspan
Jenna was a champ today handling new experiences, people and places. When we arrived at the Floortime Center, she sat on my lap holding her "little people" (her dollhouse dolls) and began her usual observing and assessing her surroundings while we waited to meet Jake Greenspan. After a short time, Jake came out, introduced himself and invited us to join him. We started off in one of the therapy rooms that had shelves and shelves of toys to play with. Jenna quickly found a variety of play houses to play with and put her little people in them. As Jason, Marcia (Mimi) and I spoke with Jake, she engaged herself in exploration of the doll houses. I am betting she was quite pleased that she had so many options for her little people to explore. While in this room, she engaged herself with the dolls, dollhouses and with responding to us when requested. While she was content, she was hyper focused on her little people and the moving parts of the doll houses (the doors that opened, which dolls could fit through which doors, etc).
Upon an initial eval of our playtime with Jenna, she engaged with us only when she wanted something or when we "directed" or guided her next step in play with us. As in the Floortime model, our goal is for her to initiate longer exchanges of communication with us and with others. Jenna is a very social person who seeks out relationships, affection, and being with others. However, with her lack of expressive language paired with the fact that she does not know how to put herself out there and be assertive when it comes to interacting with others is the challenge that we are targeting. Social and verbal/language problem solving is an area that she greatly lacks. When she experiences a failed attempt to communicate, she either tries the same approach again and again, gives up, or gets frustrated and reverts to self-calming behaviors such as stemming (other times she taps or hits her head with her fingers or fists, screams, or pushes/hits). Can you imagine knowing what you want to say, knowing what your intention is only for it to be misunderstood? Your thoughts and feelings being locked in your head with no reliable way of sharing them? This is what she faces all day, every day as a curious, vivacious six year old who wants to interact with the world as she watches everyone around her do so "easily".
While in the first room, Jenna interacted with us when we put ourselves in her way but only in a one or two cycle exchange. She remained focused on the little people, the toys, the sounds coming from the other room. While I tried to get her to play WITH me rather than along side me, she humored me but the string of exchanges were short lived and she was easily distracted by her focus of having possession of her little people. There were some near-successes for expanding that number of exchanges but she seemed very content with exploring things and keeping tabs on her little people. She comforted herself by focusing on the small things within close visual proximity. She may have made a fleeting eye contact with Jake once or twice but was focused on things that were in close proximity of her. We then went into a gross-motor room. There was a slide, a playhouse, a swing, mats, and other things that lends to physical play. As soon as she walked in, her face lit up. She expressed excitement and that outgoing personality that always waits in the shadows of her challenges was standing front and center. The one that manages to make appearances when things are lined up just so. The went right over to the "tire with a platform" swing and began to climb in. This part of the session included many smiles, laughs, requests, communication via body language, gestures, words, smiles, and eye contact. She was a different child in the room that provided opportunities to exercise her vestibular system. She was much more willing to put herself out there in order to extend the lines of communication and play. In this room, there were not small objects, no shelves of toys, nothing on the walls, no visual distractions which we clearly saw with her in the first room. She seeks out and responds with opportunities to exercise her vestibular system. When her systems are better aligned, she is able to focus on other things such as other people in the room, making eye contact, expressing herself more effectively, attending to language, seeking out others to play with and sustain interaction with. She quickly "turned on" to Jake's presence and interest in interacting with her. Before we knew it, she was gleaming joy, reaching for his hands, looking him in the eyes and making gestures and verbal requests in order to sustain longer play. This was fantastic feedback in learning that our girl needs movement, she needs help adjusting her vestibular system and bringing it to a regulated state. We've been aware of this but to see the change in her social assertiveness from one situation to the next in a back to back manner, made it even more clear.
Sensory integration will be vital for her in acquiring skills needed that will lead to expressive language acquisition. Jenna experienced damage to her brain in the areas of spoken language, nervous system/sensory, and visual cortex. This does not mean that she cannot or will not gain these needed pathways. It means that they have not followed the typical mapping that one's brain usually undergoes. Our job is to help facilitate the growth of new pathways. Since the brain is an amazing organ, one that has capabilities we do not even yet know, we are fortunate in that we can do things to help Jenna's brain form new pathways. Pathways to build the connections that her mapping does not currently provide. We do have a couple areas that need to be mended and tuned in in order to provide an efficient foundation for this to occur though. Jenna's vestibular system does not function properly. She does not know where her body is in space, her spatial awareness is poor and she does not process incoming sensory information regarding body placement and movement correctly. Imagine you are experiencing one of those days in which you have every intent to complete a difficult task. You are motivated to do so, have a clear goal in how you will attempt but you end up just spinning your wheels. Rather than reach the goal or even make leeway, you find yourself much further behind, exhausted, overwhelmed and frustrated. This feeling is very common with those who experience sensory integrations disorder.
We have to help Jenna's vestibular system move from a system of dysfunction to a system that is regulated. One in which she can depend on and therefore use to help move her closer to appropriately attending to expressive language acquisition.
As my own brain is starting to shut down for the night, Jenna is still trying to regulate herself into a calm state. She has jumped around, back and forth, jumped on the bed, ran from room to room, sang Frozen and Maroon 5 songs, twisted herself into the mummy form with the fitted sheet, jumped on her daddy, tried to eat donuts in the bed, wiggled, waggled and kicked her legs about like a bucking bull. Deep pressure is not enough tonight it seems. And I think my brain just went from fully engaged to hazy stare. Time to close for the night. So much more to say, so little energy to say it right now.
Upon an initial eval of our playtime with Jenna, she engaged with us only when she wanted something or when we "directed" or guided her next step in play with us. As in the Floortime model, our goal is for her to initiate longer exchanges of communication with us and with others. Jenna is a very social person who seeks out relationships, affection, and being with others. However, with her lack of expressive language paired with the fact that she does not know how to put herself out there and be assertive when it comes to interacting with others is the challenge that we are targeting. Social and verbal/language problem solving is an area that she greatly lacks. When she experiences a failed attempt to communicate, she either tries the same approach again and again, gives up, or gets frustrated and reverts to self-calming behaviors such as stemming (other times she taps or hits her head with her fingers or fists, screams, or pushes/hits). Can you imagine knowing what you want to say, knowing what your intention is only for it to be misunderstood? Your thoughts and feelings being locked in your head with no reliable way of sharing them? This is what she faces all day, every day as a curious, vivacious six year old who wants to interact with the world as she watches everyone around her do so "easily".
While in the first room, Jenna interacted with us when we put ourselves in her way but only in a one or two cycle exchange. She remained focused on the little people, the toys, the sounds coming from the other room. While I tried to get her to play WITH me rather than along side me, she humored me but the string of exchanges were short lived and she was easily distracted by her focus of having possession of her little people. There were some near-successes for expanding that number of exchanges but she seemed very content with exploring things and keeping tabs on her little people. She comforted herself by focusing on the small things within close visual proximity. She may have made a fleeting eye contact with Jake once or twice but was focused on things that were in close proximity of her. We then went into a gross-motor room. There was a slide, a playhouse, a swing, mats, and other things that lends to physical play. As soon as she walked in, her face lit up. She expressed excitement and that outgoing personality that always waits in the shadows of her challenges was standing front and center. The one that manages to make appearances when things are lined up just so. The went right over to the "tire with a platform" swing and began to climb in. This part of the session included many smiles, laughs, requests, communication via body language, gestures, words, smiles, and eye contact. She was a different child in the room that provided opportunities to exercise her vestibular system. She was much more willing to put herself out there in order to extend the lines of communication and play. In this room, there were not small objects, no shelves of toys, nothing on the walls, no visual distractions which we clearly saw with her in the first room. She seeks out and responds with opportunities to exercise her vestibular system. When her systems are better aligned, she is able to focus on other things such as other people in the room, making eye contact, expressing herself more effectively, attending to language, seeking out others to play with and sustain interaction with. She quickly "turned on" to Jake's presence and interest in interacting with her. Before we knew it, she was gleaming joy, reaching for his hands, looking him in the eyes and making gestures and verbal requests in order to sustain longer play. This was fantastic feedback in learning that our girl needs movement, she needs help adjusting her vestibular system and bringing it to a regulated state. We've been aware of this but to see the change in her social assertiveness from one situation to the next in a back to back manner, made it even more clear.
Sensory integration will be vital for her in acquiring skills needed that will lead to expressive language acquisition. Jenna experienced damage to her brain in the areas of spoken language, nervous system/sensory, and visual cortex. This does not mean that she cannot or will not gain these needed pathways. It means that they have not followed the typical mapping that one's brain usually undergoes. Our job is to help facilitate the growth of new pathways. Since the brain is an amazing organ, one that has capabilities we do not even yet know, we are fortunate in that we can do things to help Jenna's brain form new pathways. Pathways to build the connections that her mapping does not currently provide. We do have a couple areas that need to be mended and tuned in in order to provide an efficient foundation for this to occur though. Jenna's vestibular system does not function properly. She does not know where her body is in space, her spatial awareness is poor and she does not process incoming sensory information regarding body placement and movement correctly. Imagine you are experiencing one of those days in which you have every intent to complete a difficult task. You are motivated to do so, have a clear goal in how you will attempt but you end up just spinning your wheels. Rather than reach the goal or even make leeway, you find yourself much further behind, exhausted, overwhelmed and frustrated. This feeling is very common with those who experience sensory integrations disorder.
We have to help Jenna's vestibular system move from a system of dysfunction to a system that is regulated. One in which she can depend on and therefore use to help move her closer to appropriately attending to expressive language acquisition.
As my own brain is starting to shut down for the night, Jenna is still trying to regulate herself into a calm state. She has jumped around, back and forth, jumped on the bed, ran from room to room, sang Frozen and Maroon 5 songs, twisted herself into the mummy form with the fitted sheet, jumped on her daddy, tried to eat donuts in the bed, wiggled, waggled and kicked her legs about like a bucking bull. Deep pressure is not enough tonight it seems. And I think my brain just went from fully engaged to hazy stare. Time to close for the night. So much more to say, so little energy to say it right now.
Momma's Attempt to Get Back to It
They say that writing is another tool for thinking. Well, this momma has a lot of thinking going on. So much so that I cannot keep up with the many directions it is veering off to as we continue on this leg of our parenting journey. I have always fallen back on writing as a tool to organize, express, feel, sort through and communicate.
This blog is a spin-off from our original blog, www.blakenandjenna.blogspot.com My plans for this blog does not include organization, formality of any kind, polished writing or even great grammar (I have to admit though, that latter detail makes me cringe. You can not ever take the grammar teacher out of a writer who is an ELA teacher). Anyways, these are simply my thoughts, fears, questions, processing of and raw feelings about our experiences with bringing Jenna to Greenspan's Floortime Center.
It makes me a bit nervous to put myself out there, as I am a bit of a perfectionist when it comes to sharing writing. However, I am going to take a leap and (mostly) leave self-criticism of written expression behind on this blog. I want to share with family and friend supporters alike, how things are going. I want to share with those who love Jenna, things that we are learning about her, things we can do to help her grow and continue to be happy and to give myself some "me" time since writing is one of my favorite pass-times.
This blog is a spin-off from our original blog, www.blakenandjenna.blogspot.com My plans for this blog does not include organization, formality of any kind, polished writing or even great grammar (I have to admit though, that latter detail makes me cringe. You can not ever take the grammar teacher out of a writer who is an ELA teacher). Anyways, these are simply my thoughts, fears, questions, processing of and raw feelings about our experiences with bringing Jenna to Greenspan's Floortime Center.
It makes me a bit nervous to put myself out there, as I am a bit of a perfectionist when it comes to sharing writing. However, I am going to take a leap and (mostly) leave self-criticism of written expression behind on this blog. I want to share with family and friend supporters alike, how things are going. I want to share with those who love Jenna, things that we are learning about her, things we can do to help her grow and continue to be happy and to give myself some "me" time since writing is one of my favorite pass-times.
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