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Monday, December 7, 2015

The Smallest Preschooler

Ellie goes to preschool.

WHAT IN THE WORLD WAS THAT GOING TO LOOK LIKE?!

And, this is technically her last year before becoming a kindergartner.

How was this going to work? She needs to be carried most of her day. She doesn't talk, engage with people, or follow directions like a typical student would.


Well...here is how I believe she feels about preschool....I know she loves me (and I love her SO MUCH), but I can tell you with 100% certainty that she is not happy at parent pick up to see me. No offense is taken of course because I know how HAPPY she is going to school.

A couple years back when the birth to three program talked to us about transitioning my 3 year old into preschool...I kind of thought they were crazy. She was at about a 3-6 month old in most areas of development. How would she do anything at school that would be more beneficial than the care I was providing her at home with frequent visits to therapists.

Ellie and her WONDERFUL teacher Shelley
Well, it has been amazing. Every step of the way. Ellie has a team (or staff, really) of kind, caring, loving, intelligent professionals that go out of their way to provide Ellie with the best and most beneficial experience she could have. They turned this crazy idea of preschool into a safe, therapeutic and fun atmosphere of growth and learning. Leading this team is Shelley, whom we love and adore. She is Ellie's teacher who instructs and coordinates what Ellie's experiences will be like. When we sit down for our IEP meetings, I am always impressed to see how she can get more than 10 working professionals to move their schedules around to meet and discuss Ellie.


Ellie goes 4 days a week for about 2 1/2 hours each day. When we arrive at school, Ellie's one-on-one para-educator, Tammy greets us. She makes sure Ellie stays safe throughout her day and helps transition her between classroom activities and therapy.

Ellie and her AWESOME para-educator Tammy
 One of the great things about preschool is that the therapy is part of the classroom experience. It is incorporated into play. Not always does this work for kiddos but at this point for Ellie it is ideal.

After her favorite "circle time" she works with audiologists, speech therapists, occupational therapists, vision therapists, physical therapists, her para, teacher and all of her friends.


She may not interact in a way that I thought was "preschool appropriate", but I have learned that there are many meaningful ways other than the way I thought, that shouldn't diminish the value or importance. It is still so important because it is her experience as an individual. She has a day that I am not 100% a part of, and that is scary. But it's also beautiful because I see the joy that the autonomy brings to her soul. My sweet girl Ellie is her own person...no matter how small.





Thursday, January 22, 2015

Hungry for Help

I have not wanted to talk about our feeding issues for a long time because they cause so much pain in my heart. This has been absolutely the hardest part of raising a child with complex needs. I had been on such high alert and high anxiety that I wanted nothing to do with any of it anymore. No doctors, no tests, no talking about it, no blogging, no anything that would make me feel like we are anything other than a typical family.  But I am sick of carrying this anger in my heart daily. I am exhausted from how these negative feelings can just eat away at your soul. So I am hoping that by coming out of this hibernation of hate, my soul will feel less heavy and welcome in more love and gratitude for the beautiful things Ellie is currently doing.


Ever since Ellie had her feeding tube placed, the nutrition piece has been a challenge. It was always in the plans to do a blenderized diet. She would eat what we do, food! Not some concoction made in a lab that I wouldn't touch myself, UNLESS medically necessary. And in Ellie's case, it wasn't. She needs the tube because she refuses to eat, not because she physically can't.

I personally place GREAT IMPORTANCE on the relationship that good nutrition = good health and wellness. It is one of my strongest values, that I put so much of myself into. Sure, as a family we do eat junk food from time to time, but I try and keep it in moderation. However, I am very strict about what Ellie eats, ALWAYS. I feel as if this is one thing that I can control in her world of uncertainty.

It is a great deal of work that can seem exhausting and overwhelming, but is such a labor of love.

These are the groceries that go into 1 batch of Ellie's food. Each batch lasts me about 12-14 days. We spend approximately $350 each month just on Ellie's food, (if we used formula, insurance would pay 100% of Ellie's food costs).
Several blenders fill up a huge bin of beautiful colors from real food. Most everything is organic and raw, with the exception of the grains (quinoa) and sometimes the protein (which varies from bi-vals (clams, scallops) to beans and high protein sprouted tofu).

All foods are combined so that every serving has equals parts, ideally!




Of this 12-14 day supply, each 24-48 hour supply is divided out and frozen so that food stays fresh. Each day, Ellie receives 4 feedings of food of 6-7 ounces usually around the times of 8:30am, 12:30am, 4pm and 7:30pm. She is also hooked up to a pump while she sleeps to provide her with 400ml of additional water per day. Whenever we travel, whether it be running errands or out of town, the feeding has to be carefully planned as Brad and I are the only ones who know how to feed Ellie. This means we can't be apart from Ellie for more than 3-4 hours. For example, when we went to the National Institute of Health, we filled up a cooler with the exact number of bags and plenty of dry ice to last us for the entire journey. This meant having to call different grocery stores along the way to locate more dry ice if we were running low. Then, we had to make sure the hotel could accommodate us with some freezer space and access to the food, (not always the easiest task) and a fridge in the room for storing the ready-to-go food. For meals eaten on the road, we had to stop and find places that could give us a cup of very hot water, (not many fast food places had this) that we would use to dip her food cup in to warm it, similar to heating up a bottle. When running local errands, we have a little thermos we use to keep the next feeding warm and ready to go. We also bring with us extra extensions, buttons, syringes, small syringes for when food gets stuck in her tube and we have to unclog it, and PLENTY of wipes for when we make a mess and shoot food all over the place.

It never made sense to me before why a blenderized diet would be tricky. I don't count calories and scrutinize everything my family eats. And yet, they still grow and are healthy. Why do it any differently? However, being that this was new to everyone, it was important that I wrote down recipes, charted, graphed, measured, weighed, calculated and prepared everything that went into the blender. This would be a team effort between myself, the GI doctor and dietician. I assumed we would all be in this together.

Immediately following the placement of the g-tube, I started introducing foods into Ellie's tube. A huge part of me felt a sense of happiness and relief; this kid could finally start taking in and enjoying all the health benefits of kale, lentils, oatmeal, quinoa, sweet potatoes, avocados, etc. The dietician and GI doctor put together a sample day of what Ellie should be taking in. We would continue to monitor her and make changes accordingly.

As the weeks and months went by Ellie started dropping some weight. I speculated that some weight loss would occur due to the fact that she: a.) just had major surgery, and b.) went from a very high calorie, oil-based homemade formula to kale, lentils, and quinoa. However, we needed to find the exact cause by determining what she was deficient in. The GI doctor and dietician kept telling me that there was a nutrition program they could have access to that would allow the dietician to input all of the recipes and calculate what we need to change. I thought this was a GREAT idea and just what we needed.

Months and months went by waiting for this program as Ellie continued to lose weight....The hospital had it and was utilizing it, but for some reason the GI doctor and dietician couldn't access it.

Every appointment we heard the same thing, just waiting on the program, and then we can get started.


Finally, it was appointment day once again. I remember feeling really good about this particular visit. Maybe today we would make some progress.



When the door swung open 40 minutes after the appointed time both the dietician and GI doctor walked in and the tone changed. The smile on my face quickly turned into disbelief by the words he directed at me in frustration and anger.

"This is horrible, this is terrible. She is trending poorly, what you are doing is not working."



Not only was I caught off guard by the demeanor of my "teammates", but was appalled at the level of frustration that was directed at me. As if I am not trying hard enough with: my over 40 unique recipes, pictures of the products I am using, and calculations of measurements.

I don't remember if I ever left my seat, but in my heart I jumped out of my chair, and I know for a fact that I lost all composure. My voice was raised as I attacked back, "How can you say that, I have done everything you have asked me to. Where is this program that will help us with answers? Why aren't you doing YOUR job? How can you tell me what to improve on if you haven't even taken the time to establish a baseline of her nutritional needs?!"


After telling me not to get so defensive (about MY child ) this GI doctor responds with "I am not happy with this at all, her size is disgusting to me."



Now, her weight was getting scary, but her height was symptomatic of the underlying unknown genetic condition, and not something that she or we could help. REALLY??? I asked? Would you say that to someone who has a form of dwarfism...that their size was disgusting to you?" He replied, "no because they have growth potential." Ellie is a small beautiful person and her short stature doesn't make her disgusting...she is perfect!

He left the room for a moment with just the dietician who just sat uncomfortably quiet. I lost it and started crying. I was so mad at myself for crying in front of them, as if I was being weak. I did not want them to think that they had such power over us. But they did. My daughter was getting down to a scary weight and I was in dire need of help. The people I trusted to care for my daughter.

I posted this picture in another blog post. This is the worst I can stomach to share.

Ellie would act lifeless. She would hang in her jumper unable to hold up her head while her tears fogged up her glasses. 
Two weeks later, we had a follow-up. Why I went, I don't know....probably out of desperation, or because I wanted to see that things were better. That maybe time had cured us of all of our anger. After all, doctors are people too and I liked this particular one very much. I respected him. I also felt sad for him. I think his ego was getting in the way. Ellie is so complex, and like many other professionals, he didn't have an answer and didn't have the time to deal with someone who is not a "by the book case."

The GI doctor told me at that appointment that they had finally located the software to input Ellie's data, that they would be doing it that day and that they wanted some additional labs drawn. That was the last time I heard from this doctor or the dietician. They never once called me, either one of them to tell me what I could do to help my child who was still under their care. Never. Even when our geneticist reached out for guidance as Ellie's health and weight continued to spiral down...he responded with silence. He had given up on her and didn't care.

Ellie was looking worse. Her bones were visible, her spine and ribs were noticeable. My two year old was nearing 13lbs. She was throwing up and appeared to be deteriorating. I was crying everyday.  I felt so helpless. I would have given her anything they told me, formula or any concoction to make things better. But they had given up on us and I didn't know what to do. My core of motherly instincts had been shaken from not knowing what was right for my child anymore. Where do I go?Who do I turn too? I was frozen, scared of trying other GI doctors at other hospitals (many of which were not accepting new patients or had a 3-6 month appointment wait time). I felt as if no one was going to help us. They wouldn't understand a blenderized diet and be able to provide the support we needed to go along with it.

We had an appointment with our geneticist Dr. Lawson Yuen. She said they have a metabolic dietician that she would like to bring on board to one of our appointments. She really thought this woman would be a good fit for how we were trying to go about feeding.

The next appointment we met her. I was terrified of her. I could feel my face turning a pasty white color and the adrenaline rushing through my body. What was she going to say? Was she going to help me help my daughter? Was this going to be a waste of time? Was she going to tell me that I am a horrible mother?

Karyn, the dietician, listened, asked thoughtful questions, suggested and applauded the effort I had given to Ellie's diet. "I've never seen anything like this!" she said after I gave her my "book" of recipes. She was excited to work with us...she actually wanted to! She was a blessing and the miracle we were looking for.

She went home and spent one weekend inputting a few recipes into the software, and determined less than five things I needed to change. For instance, reducing 1 cup of nuts to 1/4 cup, substituting a higher carbohydrate liquid such as rice milk instead of the hemp milk I was using, switching from 1 cup of quinoa to 2 cups. Ellie has been GAINING weight ever since. No more throwing up and acting lethargic. She finally outgrew her 6 month clothes!  I feel like between the dietician and geneticist, they saved her. They bought us time. I am so grateful and relieved but also...OH...SO...ANGRY. All of those months my child lost weight and suffered grievously at the hands of this locally revered GI doctor, who took an oath to do no harm, and his dietician's lack of care. MY CHILD. My beautiful, sweet, kind, loving, PERFECT little girl waited, while they did nothing, with the promise of doing something. Inspite of this, the despair has begun to fade and the blossoming of my sweet girl into her beautiful small body is such a blessed thing to watch.