Our Little Jacob

This is a blog detailing the daily struggles of having a child with Spastic Quadriplegic Cerebral Palsy. My son is 1 of 2 surviving triplets. My son and his identical twin brother Logan who passed away at 6.5 months old had Twin to Twin Transfusion before they were born. They were delivered at 28 weeks to try and save all 3 of their lives. I have a hard time connecting with other parents raising children with severe disabilities so, I thought I would branch away from my other blog to blog just about my son and his special needs in hope of reaching out and supporting other moms dealing with similar issues.

Blended Diet

My son does not tolerate in commercialized formula well we have tried a few with no success.

He originally ate by mouth after he left the NICU. He was on Enfamil EnfaCare is a milk-based, 22-Cal/fl oz formula and breast milk until he was 1.
When he was 10 month old he had a g-tube placed. He started projectile vomiting shortly after he left the hospital. When he was 1 we switched him to PediaSure. We tried this for 4 or 5 months he vomited more than he kept it down.
After several other formulas including Vital Jr. and Peptamen Jr. which were apparently more broken down and easier to digest...he still continue to vomit. I was on the verge of sending him for surgery to stop the vomiting.

It has been about almost a year now that we decided to try making our own food for him. I came up with a recipe after looking at several other recipes online from other mom's who have children around the same weight and age as him. Update 4/11/12 We just got a brand new Blendtec Classic Blender for my son today. I was looking to buy 1 with our tax return. I called Vitamix and Blendtec about medcial discounts for them. They both offered medical discounts, but the customer service lady told me to write a letter to the company to see what else they could do for discounts. A few days later I got a phone call and email stating they were DONATING us one for FREE with a 7 year warrenty. I played with it a little tonight and I think I am in love already. Thank You Blendtec for helping our family!!!

I use  baby food. and fresh food to make his formula, he tolerates it very well. He went from vomiting 3 or more times a day to vomiting once a few 3 or 4 days. Unless he is sick..he will still vomit daily, but it is still better because on the commercial food he did not hold any of it down and would usually end up hospitalized. Since going on the blended diet he has gained almost 5 pounds. His skin improved. He does not reak of smell of formula anymore. The down side is when he vomits it smells 10x worse. He is also more alert and active than ever before. His bowel movement pattern improved. He went from requiring medication for constipation on a daily bases (sometimes hospitalized for his constipation) to having a normal formed bowl movement every day. The beginning of last year he was hospitalized every month for the 1st 5 months from sickness, and aspiration pneumonia related ro his vomiting. Best of all he is not starving to death anymore for constantly vomiting his foods.

Our cost for our home made formula is about $125-$150 every 2 weeks. We help cut cost by asking our friends and family for left over stage 2 baby food that they do not use. I also get baby food from people who get WIC and do not use all the baby food. This has saved us a TON.

So this is what we use: (before the new blendtec blender)
Stage 2 baby food:
4 fruits, and 4 veggies jars (4oz each)
3-4 stage 1 meat jars (2oz) or you can use beans
2 cups of milk. I use 1 cup of LifeWay Orginal whole milk Kefir (has live probiotics in it) and 1 cup of Horizon Organtic Whole Milk plus DHA Omega-3
1 dropper of Enfamil Poly-Vi-Sol
GERBER DHA & Probiotic Cereal Rice Cereal 6 table spoons
Crisco Puritan Canola Oil with Omega-3 DHA 2 table spoons
Bragg Organic Raw Apple Cider Vinegar 1 table spoon (suppose to help with reflux)

This mixture is divided into 3 feeds for my son at 400ml each. (which he would have never tolerated before) he could not tolerate 4 230 ml feeds before, The mixture is roughly about 1200 cal if I remember correctly.

My son is 29 pounds and 34 inches long. His diet has been ran past his GI doctor (they do not approve) and a dietician and a industrialist. They agree that he is doing well on this diet (he has had blood work to prove everything is in range) They worry he is not getting the "micro nutrition" he needs. I look at it this way his brother hardly eats anything but bread/starch products and milk...we do not scrutinize our "normal children about their micro nutrition so I will not force my son to go on liquid can formula. He eats better than my other children as far as I'm concerned and I do understand he need is NOT like a normal child, but I think he is doing wonderful!

For when we are on the go or for when I am sick and just need a break we do keep a small stock pile of COMPLETE Pediatric formula on hand.

A ready-to -use, blenderized tube feeding formulated from traditional foods including meat, vegetables and fruit, specifically designed for children ages 1 to 10. Suggested indications are for children requiring chronic or long-term, total or supplemental tube feeding, children with special health needs, failure to thrive, HIV/AIDS, developmental disabilities and chronic illnesses. Lactose- and gluten-free. 250 mL cans.