Pureed food and calories

       Sooo.... getting 1500 calories in your kiddo can be a challenge. It's not like it's an option as with fussy eaters who are in good health, their food drama comes and goes and they're no worse for wear.  High nutrient food has a higher level of importance to those in fragile health.  Just brought to our attention was the fact that anti-convulsant medication depletes calcium !!!! Thanks for the memo! One would think that someone might have mentioned that sooner. It took us about 10 years before we happened upon a Dr. that felt it was worth mentioning.  I always asked about side effects of meds but never knew I should be asking about the effects it could have otherwise.  It's a BIG deal ! We lift Kylie up and down, in and out of everything.  She needs to be solid!
         Even more so now, with an impending 7 hour spinal surgery staring us in the face, is the importance of nutrition.  The surgeon ordered blood work that checks overall nutrition level. It's called albumin.  Kylie is good but my neurotic mommy brain wants it higher. (Que Google search...)  One way to do that is to increase protein.  Ok, so suggested protein intake for girls age 12 is 46 g.  Pediasure has 7g. Per 8 oz. Serving. So if she were getting only her recommended 4 bottles of "sugar oil" per day, that would only give her 28 grams a day.  Booo....  Just so happens Garden of Life Raw Meal has 34 grams of protein per serving.    AMAZING!!!
          Kylie is still able to eat pureed food. It is one of the few things in life she can still experience so I feel it's very important to continue with it even though we could go the tube route completely.  Here presents another opportunity to make every bite count.  I firmly believe in "good fat", high in calories and high in nutrient value. It's also nearly flavorless.   You can add 120 calories per tablespoon of olive and coconut oil. I put coconut oil in Kylie's warmed  organic pumpkin puree with raw honey and oatmeal baby cereal.  That's one quick option.  I think next our next  one way conversation will include our recipes for healthy go -to yummys.

Tube feeding

   Kylie was able to avoid having a feeding tube until 2013. Drinking from her bottle became difficult even though we tried thickening the liquid. She spent more time coughing on what she was drinking than she did drinking.  That was because she was aspirating which causes pneumonia. It got to the point where she was in the hospital regularly.  So, November of this year Kylie had a gastrostomy tube put in. It's a very simple procedure and not very invasive. It only took an hour. The surgeon said he had to do a little extra tugging because her tummy is so small.  Later we learned that meant more pain than usual.  Being that Kylie was his last surgery of the day he left only having given orders for Tylenol.  That was not doing the job. She cried for an hour and a half by the time orders were sent for stronger meds and the hospital pharmacy actually filled it.  Lesson learned.....always plan with the surgeon what will be the back up plan in case first medication is not working for pain.
    We stayed an extra night in the hospital because she needed to be on the stronger meds.  As we prepared to go home, Kylie' s heart rate slowed down.  After a few hours of being off the meds and some oxygen she was back to normal.  Back home we went to try out our new gadget that would make our life a little easier and help our princess stay healthy.  It took only a week or so to get the groove of it.  Then I got to thinking, if she can't taste what she's eating then why should she be having 18 grams of sugar in every feeding?  Well, the answer is....because it's a cheap way to boost calories!  Formula is big business and as with everything else in this crappy world, it's all about the moolah!  (my biggest peeve)  As I hate being a gullible yes man, I did some research to see if there were any alternatives.  There is a good company in the works out there who agree that the choices out there for tube fed people are lame. They call their formula "Just Food"  It's real food!!!   Bravo!!!   Just seven ingredients in each , all of  which can be easily pronounced and equal a whopping 350 calories!!!  As far as I can tell its not available to get yet but it's nice to know SOMEONE sees the need.
       Here's the next best thing,  Raw Food Meal Replacement powder made by Garden of Life.  It is pricey but well worth it knowing you are providing the best nutrition possible.  Two good places to buy it are Amazon and Vita Cost.  One or the other is always offering free shipping or other incentives.
        The challenge with the raw food powder is the thickness. You definitely have to push it through rather than using gravity.  It was still a struggle to draw up into the syringe, nearly impossible,.....then the epiphany...Olive oil !!! Just rub a few drops around the inside of the syringe and the rubber part of the pushy inny thing and voila.....Easy!!

Lights...Music...Happy!

           Toys are really blingy now. Everything has to light up and play music.....which is not what I feel is  good for kids in general, but I'm singing their praises for special needs kids. And because of Kylie I still frequent the baby toy section. Many she cannot use. They have to be easy to activate. So I hang out in the toy isle and press lightly with a limp hand, I probably look silly.  If a sales person tries to help me decide on a purchase by asking how old the child is sometimes I lie and say 6 mos. But usually I see them coming and Sprint out of the isle. If it's not flu season and Kylie is up to it I shop with her and she tries them out.  I bought a bumpy ball at Target years ago to roll around on her arms and legs as stimulation for her muscles and it ended up being her favorite thing ever. She liked having it up to her mouth, I guess she liked the feel of the bumps on her lips.  She's had quite a few favorites over the years but as the years pass seizures and spasticity have stolen her ability to enjoy  them nearly as much as she did.  The pictures for today are examples of how much seizures and growth change these kids quality of life dramatically.
           Kylie was able to sit up without any help for quite awhile so we thought progressing to more or at least retaining her current ability was how it was going to be. Such is not the case. I'm saying for us, for you and your child, lissencephally or otherwise, it's always good to be aware of the possibility of regression.  In my personal experience, having the rug pulled out from under you always proves to be more painful.

          If you ever wonder what to get a child who can do little but see and hear,play those things up!!  Lights and sound are the key. Kylie can't smile or show joy anymore but I assume she still appreciates when we help her press buttons and provide as much stimulus as possible. I really appreciate what she CAN do. I met a couple with a little girl who had a condition that caused her to go deaf AND blind.....She also didn't have long to live. If that is your case, please post comments about how you cope and what you do in order to bring them happiness.

     

Seizures: in the beginning

      Seizures are a real pain. They could really care less about your plans for the day. In Kylie' s case, the first seizures we saw were barely noticeable. They were just a facial expression and stiff, slow movement with her upper body. They caused her to cry for very long periods of time after probably because they scared her. But after awhile not all of the seizures caused this. Our first medication was Phenobarbital.  As I recall it didn't help much. Next was Kepra.  Seizures didn't go away but we're probably less frequent. When your new at this unfortunate and strange shift in your life everything is scary. It's all uncharted territory but if you're reading this because you just learned your child has Lissencephally, believe me when I say it will get easier, you will learn the ropes.  It will be possible to go a day without freaking out. We ran to the ER every time Kylie' s seizures were lasting a little too long. We thought "Oh my God, she's gonna die right here." Every day I thought, "is she dying? "  Worst days of my life..... Time goes on and you watch people go on with their petty issues and that's really hard too.  Acquaintances of mine literally were seen dodging me in Wal-Mart because they "didn't know what to say".   Some people would comment " Oh, you need a day at the spa" (How ridiculous.)  So, point is...you have to turn a deaf ear (...and maybe get new friends, I did.)
           After inpatient hospital video monitoring with EEG(electroencephalogram), Kylie was diagnosed with infantile spasms. These are a type of seizure that children two and under can have. They are best treated with daily injections of ACTH(adrenocorticotropic hormone). My husband was trained to give them in the hospital (as I stood in the hallway out of ear shot) So we were sent home with what is essentially a steroid treatment. That meant Kylie was hungry ALL THE TIME!  This took on a whole new level of sleeplessness as Kylie was breast fed. So I turned into a barely human milk machine. Ky was more like an appendage than a separate person. But I was fine with it, breastfeeding is pretty much like that anyway.  She ended up having two rounds of ACTH, each lasting a month. As you can imagine, Kylie ended up looking like a balloon about to pop. Infantile spasms, I came to understand are very important to get rid of quickly. This I was not told directly but I could sense the urgency. You absolutely have to listen closely and hang on every word the Dr' s say.  There is a reason Dr' s word things a particular way and you have to ask specific questions in order to get the information you need. The more you know the more you can help your child. This does not mean to go crazy on Googling and trying to find alternative treatments that promise crazy results.... let us not go there. Your child has a brain abnormality, he's not going to grow pathways in his or her smooth brain anymore than a person will grow an arm that is missing!!  Your goal should be to understand the diagnosis as best you can so that you can make added adjustments to your child's routine and/or dietary needs, whatever the case may be.

Kylie approximately 7 months old during ACTH treatment

February first. Baby with a secret

Twelve years ago today, during an ice storm our daughter Kylie Eden was born. I'd never seen a human so perfect.  (I say that every time) Kylie is baby number four for me but first for my husband.  Our other children were in awe of her tiny features and spent almost as much time staring at her as we did. Unfortunately, this blog is not about how gorgeous she is. You see, Kylie had a secret birth defect that we would not discover for nearly six months later.

      As the months passed we barely took note of tiny clues she gave us that something wasn't quite right.  Kylie was taking a long time getting over her startle reflex and still required swaddling at four months. She wasn't reaching out for toys and peoples hair like one would expect for her age and was showing no signs of sitting up even as month five came around.   "Should she still be crossing her eyes?"  someone asked. ~ How offended I was!  Then there was a weird thing she did with her hands.  They were fisted as usual , but turned away from her body. The only time I'd seen that was in someone with special needs. Hmmm,.... filed under weird, again. My best answer for all of these oddities were that she is lazy probably because she is doted on by everyone. Looking back I feel so stupid. But that my friends is denial. We as parents (and humans) probably do it everyday.

   In July, when Kylie was 5 and a half months old she had a tiny seizure. I will try not to bore you with the details because if you're anything like me you will skip over them to get to the useful part.  So in short she was diagnosed with Lissencephally which is Latin for smooth brain.  The Dr' s are careful not to flood you with too much information so anything you want to know has to be asked directly. I was getting the idea that Kylie wasn't going to be able to do a lot. That I could deal with. My only question really then was "will this effect her lifespan?" ...... "Yes." .....That was all I could hear. I was done. I went into a mode that has served me well in the past, I just shut down that part of my brain and asked for our discharge papers. 

         The next few days consisted of just mustering up enough energy just to achieve the daily task of eating and bathing, not much sleeping. All of our energy was spent on crying and hovering over Kylie,documenting her every move.  My husband and friend were looking up information on the internet and reporting to me the gloom and doom they had found.  Very little of it proved accurate in our case, as Lissencephally varies depending on the size of effected area of brain.  Which brings me to the reason for this blog.  I plan to document useful information that I have learned on the way.  Not just applicable for Lissencephally patients, but for all who have profound disabilities. It is on their behalf I write to you, their caregivers.

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