Thursday, June 18, 2015

"The Ugly" (Not the Good, Not just the Bad...but the Ugly)

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 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 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.

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