Ava's new diet...

I decided to go ahead and put Ava back on her blenderized diet after to many reflux-y events. The doctor has been out of town and I just didn't want to make Ava suffer through any more formula. She has also been dealing with an ear infection, so we've had a bit more crying...which means a lot more vomiting...which means a VERY unhappy mommy!

I saw a nutritionist within the last month to help guide me with Ava's diet. OK, actually, I walked into the office in tears and begged her to "Just tell me what to feed my child!!!" My last formulation was too high in fiber and caused things to move through her digestive tract too fast thereby causing her to mal-absorb nutrients. I just wanted a few recipes...I was sick of thinking and analyzing and worrying and second-guessing...SOMEBODY TELL ME WHAT TO DO FOR A CHANGE!!!!!! Somebody who has some common sense and knows what the H*LL they're talking about.

After two and a half years, I finally got what I've been begging for. Within a week, I had 2 recipes created by a therapeutic chef...one is fruit and yogurt based and the second is veggie and broth based. Both recipes give me the ability to easily substitute ingredients to give Ava a variety of foods within a weeks time. It's the actual measurements that were so important to me. 1 cup of fruit...simple and easy...any fruit...just use 1 cup of it. 2 TBSP tahini...can be almond butter or peanut butter...just use 2 TBSP. So many combinations and variations!  

After making the recipes and calculating out the calories, I realized Ava was going to be a bit short each day. So...I called the nutritionist and within a few hours, I had the additions and quantities needed to boost the calories in each recipe.

It's amazing to have some REAL help with all of this. I feel a weight being lifted from my shoulders. It's wonderful! I'm sure we will have to continue to tweak the recipes, but I finally have some help ...some support. 

Ava's body is LOVING being back on real food! She's not reflux-y at all and her stools were back to normal the first day. She fell and bumped her cheek today. Even with some pretty good crying, she didn't so much as gag once. On formula...every drop would have come spewing out of her. I'm so glad to have her back on real nutrition. It makes her feel good...and that makes me feel good.

Ava sings the ABCs...SO CUTE!!!!

Not much new here...

There really hasn't been much new info to report. 


We're enjoying being dogless...the house feels cleaner, with less responsibility, less guilt, and a little less chaos. I miss Apollo, but his life is AMAZING now! I get lots of updates and he's doing really great. I'm sure we'll see him really soon...I can't imagine he misses us at all!


As far as Ava is concerned, she just had a blood panel last week and her iron level was just below normal. She is still on her canned formula and seems to be getting a bit "reflux-y" and "gag-y" (those are real medical terms...right?). I spent some time with a nutritionist who has designed 2 formulas for Ava which are more balanced than mine, and I have asked her doctor if I can get her back on real food. The doctor is on vacation (what a surprise) until next week, so we'll wait.


I don't normally ask permission to do things when it comes to Ava's well being, but I feel like her current doctors are truly on our side in all of this. Her GI asked to be "kept in the loop" as far as her formula goes, so I don't want to offend or alienate the first doctor that has actually taken a real interest in our case and allowed (and respected) my opinion.


So, for now, that's all I've got. Life has been pretty normal around here with school, gymnastics, and softball. Other than doing tube-feedings every 3 hours, I kinda feel like a regular family. Both girls are growing and thriving and we've been experiencing a lot more laughter and lightness. Life has felt far more "easy" over the last 6 months or so. We are eternally grateful for the reprieve, and we're trying to enjoy every minute of it! 


Hopefully I'll have more soon.

Waiting for Playhouse Disney

Happy Girl

Zoe can ride the swing by herself!!! (When she wears her tall shoes...)

Swimming at Grandma & Grandpa's

In over 300 visits to Disneyland over the last 4 years, we've NEVER seen this guy!!! Wish we'd had the girls autograph books.

Sweet girl

Apollo

Today is a sad day.


Apollo is our wonderful standard poodle that came into our lives a few months after Mike and I were married. He's an amazing dog.


The sad part? His life is pretty non-existent at this point. Our lives have changed so much over the last few years, and Apollo's life has gotten really bad. He's alone almost all of the time, he can't go outside without us letting him out, and his days are spent in a 500sf space. The girls get mad at him all the time because his mouth is right at face level and he likes to lick, they don't like playing with him because he's big and knocks them down, and he's gotten to the point where he just goes and lays in the corner alone. 


It devastates me...but I know this is the kind thing to do. His new life will include lots of dogs, constant companionship, playing at the river, swimming, spending lots of time on a house boat...I think it's going to be doggy heaven and he's NEVER going to look back.


The best part? He's going to live with our friend. He won't be out of our lives...and he won't be far away.


But I can't help being so sad about it...it's actually a bit hard to type through the tears right now. It almost feels like I've failed him in some way. I KNOW this is the most generous and self-less thing I can do for him, but with all the unbelievable stress and change in our lives, and all the responsibilities that have been heaped on my shoulders, I just feel like he's been lost in the whole thing. It's just not fair to him. Our life isn't going to get any easier any time soon and as a result, neither is his. In fact, I think it will get worse for him as the girls get older and busier.


In a weird way, I'm kinda looking forward to one less responsibility...one less thing to worry about...one less thing to feel guilty about...  And that makes me feel even sadder and guiltier. I just think it will take time for me to heal.


I'll miss him...but the girls don't care. Zoe was singing, "Yeah, Apollo gets a new home tomorrow!" and Ava decided that without Apollo she can now go to Chuck E Cheese's. They're young...they see him as a nuisance. I don't. I see him as an amazing dog who happened into the wrong family at the wrong time.


So...it's time to give him his life back. 


Love you Apollo...run, play, and bark like crazy!!!

Doctors...UGH!!!

I called the doctor today to check in on Ava's labwork. Her hematologist is out of town for 3 weeks (of course), so I talked with her partner.


Ava's bloodwork from last week (before going on canned formula) showed improvement. Her ferritin level (iron) was almost normal and her RBCs were bigger. Remember...I was supplementing her with ALOT of iron every day during the later part of December and most of January.


It proved to us that she IS able to absorb iron and the doctor now wants me to continue doing the iron supplementation while she's on the canned formula.


So here's my problem...she was on the canned formula so that we could get a baseline of her blood levels in a controlled setting with controlled "nutrition". If I'm going to add the iron drops, how does that work?


Remind me why she's on canned formula and not REAL food again?

The strangest thing happened....

Ava's canned g-tube formula came today and it was the weirdest thing ...


I gave her half of a normal feeding and....nothing happened! She didn't keel over and die. I didn't drop dead of a heart attack from feeding it to her. There were no locust and I don't think all the fish in the seas are dying. It was REALLY odd! I wasn't even struck by lightening for doing it.


Hmmmm.....not sure what to make of it all.


Let's just hope there's no vomiting...

The Plan

The doctor called yesterday. Here's the current plan.


The doctor is wondering if the formula I'm making for Ava might have too much fiber and sugar in it. If so, it can actually speed-up her gut motility which would give her body less time to absorb needed nutrients. We have no history of iron testing done prior to last May, so we aren't able to document anything before that. Ava does have a history of anemia, but without the actual ferritin (iron) levels, we can't tell if it's dietary or not.
So, for the next 6 weeks, Ava is going on a canned g-tube formula so that she can have a completely controlled form of nutrition and we can hopefully create a baseline for her blood levels.


Anyone who knows me knows how I feel about canned food for tubie children, but I understand the need to do this. It is being used in a diagnostic capacity, and even though I don't agree with this form of nutrition, I know that, in the long run, this is in Ava's best interest. Everyone involved understands that this is a short term test and she will be put back on her blenderized diet ASAP.


That said, I must selfishly admit that I'm secretly looking forward to taking a break from making formula for a little while. I've been blenderizing for 2 years now, and I'm tired. I would NEVER put her on canned formula for that reason, but I'm trying to look at the bright side of this whole thing.


We're a little concerned about Ava keeping the canned formula down...but the doctor has said that we can add a little bit of rice cereal to make it "heavier" in her tummy, so I hope we don't have any issues with vomiting...I guess we'll cross that bridge if necessary. 


I must say that I really like this doctor. She's taking the conservative route, looking at Ava as a WHOLE person and making sure that it's not something that can be easily fixed with diet before trekking into the more invasive things like IV iron injections or bone marrow biopsies.


Ava also had a bunch of blood work and fecal studies done. As of now, only the reticulocyte count has come back...and it's low, VERY low. Reticulocytes are immature red blood cells produced by the bone marrow. So, to me, this means that her bone marrow isn't doing what it's supposed to. The reasons online ranged from cancer to low iron.  We just have to wait to see what the big picture is with the rest of the blood work.


I feel the stress starting rise again. We've been out of the medical roller coaster with Ava for about 2 years. She's been really "healthy" and we've just plugged along with no bumps in the road. We're starting to hit some bumps...I think we knew it was a matter of time.


We hope it's her formula and all she needs are some tweaks to get it just right. But I can't help beating myself up thinking that I might have caused this problem with how I've been making her formula and the ingredients I've been using. But I kinda feel that if her motility was too fast, wouldn't she have other deficiencies? I would think other vitamin levels would be "off". I'm trying to justify to myself that I didn't "cause" this...but I'm not doing a very good job. I've had my cry about it...but we don't know anything yet, so I need to just calm down and wait for all of the information to come in.

Feeding Tube Awareness Week

It's finally here...Feeding Tube Awareness Week is February 6-12 and the result of alot of hard work on the part of some really special tubie mommas. Months of work and tons of love has gone into planning the first ever campaign to promote acceptance and understanding of feeding tubes. There are countless stories of beautiful and amazing tube-fed children being shunned while at public pools, parks, etc. Why? FEAR. Fear of "catching" a feeding tube. Fear of acknowledging that every child isn't healthy and perfect. I think it's really hard for people to see a child with a tube sticking out of them and the only way they know how to deal with it is to turn away and pretend it isn't happening.


Even with Ava, we have felt the stares. We know how it feels to have people pretend to look at something behind us, only to be staring at us. We've had waiters and waitresses run into the back of a restaurant and bring out the cooks to "casually" look at the people at table 12. Busboys have cleaned the same table next to us three times trying to get a view of what we're doing. Children have hovered around us, interested in Ava's tube, only to be pulled away before they've had a chance to ask what it is. 


We don't hide in a corner when Ava needs to be fed. It's part of our lives and such a huge part of our identity as a family. It's just not that big of a deal to us...and we treat it that way. Ava's feeding tube has saved her life. It has supplied her with the nutrition she's needed to grow and thrive. Without it, she'd be dead. It's that simple. If there was another way, we'd do it. Putting the tube in was a long hard decision that was not taken lightly. And yes, we did try EVERYTHING before choosing this option.


Over the years, I've gotten really good at not seeing all of the staring that goes on around us. I've shut it out. A coping mechanism? Maybe. The actual act of tube feeding is not a difficult one, but the toll it takes on a mother's spirit, on her soul, is impossible to explain. Seeing a tube in your child day after day, month after month, and year after year chips away at your very being. It changes you...forever. Add to that the insensitivity that exists around us, and it can be downright unbearable.


So all I ask of you this week is to offer a little acceptance and compassion for those with disabilities. Instead of staring...ask questions. Encourage your children to talk to people they view as different. And please remember that these incredible children are passionately loved by an amazing mother whose heart is torn apart every time her precious child is stared at, gawked at, or made fun of. We just want our children to feel loved and accepted. 


Check out Feeding Tube Awareness everyday for different discussion topics as well as tons of information about feeding tubes!

Hematologist....

We have this really great friend (and I'm not saying this because she's reading this...you know who you are!) that called me a couple of days after I wrote the last post regarding Ava's iron levels. She was really concerned by the amount of iron the doctor prescribed as well as having some unnerving thoughts about not finding out why Ava's iron levels are so low before beginning so much iron.


After I talked to her, I started to do some research on my own. Some of the information I found was pretty scary. There was talk about conditions where the body ABSORBS the iron just fine, but for some reason the blood doesn't ASSIMILATE it very well. In these cases, people keep showing up with low iron levels and blood work exhibiting anemia. So doctors keep prescribing more and more iron trying to build up the person's levels. In the meantime, their organs are having trouble processing all of this iron and the kidneys and liver, etc. actually start to rust. "Rust" was the exact term from a website I was reading.


We immediately stopped Ava's iron and sent an e-mail to our primary care doctor asking for a referral to a hematologist. I quickly received an e-mail back stating that she would contact Ava's GI to determine if there was a possible absorption issue. In turn, I wrote and said that I didn't think absorption was the issue and that I was more concerned with assimilation at this point. We got the referral that day and she had an appointment within a week.


While having her off of the iron for the time being, we were watching her stool to see if it would firm up again...it didn't. I was concerned that we might have caused some damage to her gut with the really high iron levels and asked the GI to look into it. She ran a fecal occult blood as well as a stool culture. Both tests were normal.


So...yesterday was Ava's hematologist appointment. We walked into the building and through the maze of hallways. As we approached the door, my heart stopped. On a very small plaque next to the door read "Pediatric Oncology". As I felt tears well up in my eyes, I willed myself not to cry, not to think about the countless children who've walked through these doors. The countless children who have lost their battles...never to walk through these doors again. I tried not to think about the parents who have waged the most horrific battle of their lives...the fight to save their children. But most importantly, I tried not to think of my sweet precious Ava as I watched her tiny little body cross the threshold and enter the office.


Inside the doors, I couldn't help catching myself trying to act "normal", like this wasn't such a terrible place to be referred to. If you didn't know better, you'd think this was a pretty cool place. There was a playroom, an aquarium, TV's, lots of really neat murals on the walls. But when you looked closer, the central hub of the office had those chairs...the ones that recline...the kind that you donate blood in...only these chairs were surrounded by IV poles and pumps. Boxes of gloves were on the shelves next to each chair, and each box of gloves read "for chemotherapy use only". At the end of the line of chairs was a gurney......I can imagine some children are pretty sick who go through here.


Our appointment was right after lunch, we were the first ones to arrive. The playroom was occupied by the doctors while they were having a meeting so they had us wait in the chemo room. Ava was sitting in the big recliner watching TV and Zoe was swiveling around on the doctor's stool. I couldn't look at Ava. She was so tiny in that huge chair. The IV pole and pump were right next to her and I could feel myself getting sick to my stomach. So many times I've wondered if she has some sort of weird cancer, and even though I don't believe she does, your mind can't help but go there at times. Being in that room, knowing what happens to children there....... 


Finally, we were called into the exam room.


As we walked in to see the doctor, we passed a young girl...maybe Zoe's age...and I couldn't help staring at her. Did she have cancer? Was she there for chemo? I tried to find some tell-tale sign that she was sick, but she passed us much too quickly and we were in the exam room before I could allow myself to think about it for too long.


The doctor came in and she was amazing. Her interest in Ava right now is not related to her eating issues. Her concern is 100% about the low iron levels. She is also concerned about Ava's current diarrhea as well as her history of bad stools for the first year of her life.


The plan is:


1) we fax all of Ava's blood counts and immunoglobulin tests to her ASAP (we did it last night). She also wanted all of her past iron levels, but in pouring over all of Ava's medical records (over 300 pages, by the way) we were unable to locate ANY previous labs related to iron.


2) the doctor is going to take a few days to evaluate all of the information, talk to the GI about her last endoscopy, and then order blood work based on her ideas as to what's going on.


3)she's also going to go through our genetic family tree that was created when we went to a geneticist and see if anything stands out at her.


The diarrhea was of particular concern to Ava's doctor. When Ava was a baby, she had TERRIBLE stools. They would come out of the back of the diaper and go up her back. But when we started her on the whole food diet at 8 months old, her stools improved. The doctor isn't so sure the two are related and it might just be a coincidence. Now that the stools are starting this pattern again, she's concerned that something else might be happening.


So, I asked, "Can there be a disease process going on here?"
"Yes, " the doctor replied.
"Do you have any thoughts as to what might be causing this?" I asked.
"Yes, I have a few theories, but I'm not ready to share them with you just yet. I would like to get all of the past labs from you, think it through for a few days, get the new lab tests and then go from there. But, yes, I do have some ideas."

I'm not sure how scared I should be at this point. Remember how I always say that living with an undiagnosed child is like constantly waiting for the other shoe to drop? Well, I think the other shoe is dangling by a thread...and that thread is about to break. The doctor knew that I would go home and start researching like a fiend if she gave me any information without proof, so she was probably smart to avoid saying anything.

Fortunately, we have a busy weekend. She wanted me to give her until Tuesday before I started to call wondering what to do. Hopefully we'll hear sooner. For now, we'll just go on as we always do. One day at a time. 

Having fun at Grandma & Grandpa's house

Fishing

Playing in G & G's rock fountain...always a hit!

Ava's Bloodwork

Ava had her semi-annual blood work done in mid-December and her iron level wasn't good. Last May, her iron level was in the 6 range with normal being 13-150. I'm not sure the units of measure, but it really doesn't matter at this point. A level of 6 is low and needs to be addressed.


I started iron supplements and increased all of Ava's iron rich foods. Brewers yeast, spinach, sardines, etc... I supplemented for 2 months and then stopped when I ran out of the second bottle. I continued with the iron rich foods and just kinda assumed it was OK. She was energetic and active and was looking great.


Then we had the repeat blood work in December and her level was 2. This is considered a "dangerously low" iron level with an iron supplement needed IMMEDIATELY!


So I ran out to find the baby iron drops and couldn't find them anywhere. I ended up with the adult liquid supplement. Her dose was 15mg three times a day. With the adult iron, I needed to give her 1 ounce of liquid to reach 15mg. Iron also needs to be given with a Vitamin C source and away from calcium and meals, so I was adding 1 ounce of either apple or orange juice and giving it about 20 minutes before her tube feedings...three times a day.


Within a few days, Ava's stools started to get REALLY black and VERY soft. Iron usually constipates, but with the amount she was getting, I wasn't too surprised by her stool change. We continued the supplement and just kept our eye on her diapers.


A few days after we noticed the stool changes, I started to notice an odor. "Melena" is a medical term for stool that contains digested blood. I've smelled it a million times working with animals in the hospital and it's a smell you NEVER forget. One of those odors that just screams "PROBLEM!". It's a smell that gets burned into your brain.


The scary part about melena is that it usually indicates bleeding high up in the digestive track...the upper intestine and sometimes the stomach. My first thought...Ava was bleeding because of all the iron we're giving her. Have we given her an ulcer? Is the iron ripping up her gut? I felt a wave of panic and we immediately stopped the supplement.


I e-mailed the doctor and told her what was happening...she absolutely insisted that we continue iron supplementation because her levels were so low. I mulled it over for a day or two and realized that the melena smell was actually the iron supplement itself. We had to give such a high dose which resulted in such a high volume and the iron had kind of a "blood" smell to begin with...it was AS IF her body was digesting "blood".


I finally found the infant iron supplement on Amazon and just bit the bullet with the crazy shipping cost. It took about a week to arrive. Meanwhile, I was searching every store I could think of to find the infant form of iron...with no luck. The good thing was that her body had some time to "recover" and her stools went back to normal and the awful melena smell went away.


The iron finally arrived and we started the supplementation protocol...again. This time, it's been fine. Ava doesn't seem to be having any side-effects other than a loose stool, and her energy and vibrance is the same as before.


So...we keep doing this until her recheck in March. 


How is it possible that this child has such low iron levels? She gets tons of iron in her food and she didn't appear to have any kind of mal-absorption issue during her last endoscopy in August. I'm not sure what the next step will be if the supplements don't work.


She's got lots of energy and is vibrant and alive. Definitely not the typical "iron-deficiency anemia" kid. However, we can't allow her to continue on with such a low level. 


We've worked the iron into her routine...we now use her tube 8 times a day and sweet little Ava has just taken it all in stride. I've decided not to get too worked up about it...yet. I might change my feeling on that after her March bloods.


I guess, like always with Ava...we just wait and see.