This month is the 2 year anniversary since beginning Henry’s homemade blended diet. It’s quite a milestone to me… 2 years since I started taking a proactive, interactive, hands on role in Henry’s food. No more opening a can of food and calling it dinner. Now we lovingly grow, wash, buy, choose, prepare, blend, and serve Henry’s meals… just like most other parents.
It’s been quite a journey. And one that I couldn’t have done without a lot of help – mostly from other families who also chose against commercial formulas. For a variety of reasons, we all chose real foods… and what a great choice it was! Yes, commercial formulas do serve a purpose, and for some families it may be the best option. But it’s not the only option.
In celebration of our 2 year anniversary, I’ve prepared a list of things I’ve learned along the way. Enjoy 🙂
Top 10 (or more) Things I’ve Learned so far…
1. Follow your instinct! Even if everyone you meet tells you otherwise… if you believe something may be true… keep trying! I tried for months to find a cause for Henry’s vomiting, asking if allergies could be involved. But because of Henry’s other health issues, allergies were dismissed time and time again. As it turns out… he is allergic to wheat, corn and dairy! Every commercial formula on the market contains corn, so it didn’t matter what we tried, he kept getting sick.
2. Be careful what you read! The internet is a wealth of information, but not all sources are created equal. When Henry was first diagnosed with hypotonia, I went online. What a mistake! By the end of 10 minutes I read every horror story there was, and was more confused than ever. Ask people you trust, ask for reliable sources to read, be diligent in checking a source’s biases and credentials before believing what you read.
3. It’s okay to hide in the closet and cry… just try not to do it too many days in a row :).
4. Yams, bananas and avocados should not be combined in the same menu... depending on the amount of liquid added, the resulting food will be thick enough to build a house with!
5. Ask and thy may receive… don’t ask and you likely won’t! There are so many things that we have gotten for Henry – from his customized tray for his first custom seat, to appointment dates months earlier than expected – all because we’ve asked. Be polite, be specific… explain why it would be helpful. When it comes to appointments, tell people if you can come on short notice, if you live nearly, if you’re schedule it flexible. People often cancel… by filling last minute appointments, you help out them as much as they are helping out you.
6. You are your child’s (or your own) best expert. Specialists are highly educated people in their own field of expertise. However you are your child’s expert, and a valuable member of the team. Do not feel that your input is not valuable, and if someone else is making you feel that way – stand up for yourself (politely, of course!). In our experience, specialists often see the world through their own area of knowledge… but many things may be caused by more than one option. It’s our job to listen to all the advice, and then form our own conclusions based on what we’re heard. Do not blindly follow advice you do not understand or fully agree with.
7. Keep asking until the answers make sense! (Ask and ask again!) If you don’t understand something… keep asking until you do! Baring emergency situations, most things can wait a little bit longer… long enough for you to better understand what is involved. I was told by so many people that Henry would never tolerate a homemade blended diet, but the reason’s never made sense. Yes, he has low tone. Yes, this may affect his digestion. However it never made sense why this meant he would not be able to eat real foods. As it turns out, he tolerates a blended diet better than any commercial formula.
8. You are not alone! Even if it is a blog from someone across the world… there is someone out there who can relate. We felt so alone for Henry’s first year. We basically didn’t leave the house until we had to, except for family events. And only if we checked and double checked that no one was sick. While this was needed to help keep Henry healthy… we were so isolated. We were so alone. We didn’t realize that all new parents struggled. We didn’t realize that all new parents cried. We just didn’t realize. We did what we needed to do. But upon reflection… we needed to get out more – even if it was just one of us as a time. We needed to know that we weren’t so alone.
9. Food is so much more than vitamins and minerals. By making Henry’s food ourselves, we empowered ourselves to be parents. We lovingly grow, select, wash, buy, prepare and serve Henry’s food… just like most other parents do. And it means so much more. Yes, some people do need to eat commercial formulas. They do serve a purpose. But for us… real foods make such as difference.
10. Henry does not have “bolus feeds”… he “eats” through his tube. Simple changes make a big difference. Language is so important. Feeding your child is not a medical procedure! Medical staff may need to use medical terms for their own purposes. However you choose how you talk about mealtime… normalize the experience as much as possible.
11. A good blender is key to your success. We use the Vitamix, but there are others. When reading blogs beforehand, most people commented they liked the Vitamix, so that is why we got it. It’s quite an investment, but if you’re using it for medical purposes, the company will give you a discount. Contact them directly as opposed to getting it at Costco or somewhere else. It worked out cheaper for us to go through the company. We’ve had some problems with ours over the past two years, but the service has always been great and they get things done as fast as possible.
12. Come up with a system that works for you. I used to make Henry’s food daily, the same time as I made our dinner. Now I make it is batches of 3, as this much as be put in the fridge and I don’t have to freeze it. Whatever works best for you… a good routine makes things easier.
13 Syringe vs a pump. Go with what works. Now that we’re using a syringe… it is soooooo much easier! But Henry couldn’t tolerate using a syringe for a long time… he needed to slower, steadier pace of the feeding pump. Try different things – try different syringes… find out what works for you. Try not to get discouraged when the food goes splattering all over the kitchen wall (like last week!), or you realize the extension tube can undone and food’s been leaking out for that past hour. It’s ain’t nice… but such is life at times.
Hang it there! It does get easier!
Henry still throws up (but not near as much as he used to);
I still have flashbacks from his first months of life (but not as often);
We’re all a little scarred (but we will heal);
I still cry (but I don’t do it in the closet);
It used to take us an hour to “feed” Henry. And then we would not be able to go for a car ride until about an hour after he ate, because he would likely throw up. Now, he eats with a syringe… it’s takes about 20 minutes… and we can hop in the car and go.
Life keeps changing and we keep learning more. Cheers, Shelley