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.

Saturday, January 28, 2012

Sitting in a Bumbo Chair

Jacob could have never done this 6 months ago without any trunk support :-)

He was actually falling asleep when I took this. He is using his arms to keep himself from tipping. if he falls to the left he turns his head to the right to pull himself more midline. He can't stay this way long. He will still throw himself backwards after a few minutes, but still even in a rifton chair with the chest support piece he used to fall to the side.

Thursday, January 26, 2012

Switch Toy

Our vison therapist brought Jacob a new switch toy today. We had to choose 1 thing he loved for him to only get when he pushes the button. So, we chose the pacifier. We have been putting it in his mouth all morning long every time he hits the button. We have not put it around his head to keep it in. So every time he drops it out a few seconds later he is actually hitting the button!!! I had to record "pacifier" in my voice. So he hits the blue button it says pacifier and then we have to give it to him. I am get exhausted thinking about have to be persistent in doing this....we will see how it goes...not really sure if he is randomly hitting the button or if he is actually getting it.

Friday, January 13, 2012

Pacifier Bliss

Jacob has a new found love for the pacifier....I suppose he is getting over his oral aversion...next step will be to start trying liquids by mouth again. He has absolutely been totally and utterly addicted to the pacifier for a good 2 weeks now. It took me a while to figure out what all his fussiness was about. He was having these little fits even when the Moose was on TV. Then I noticed him rooting around like a baby with his tongue out like a newborn looking for food. I stuck the pacifier in, then he would get all excited giggles and start sucking. I tried month ago to tie a string around it to make him suck on one and he would gag, chock, and cry. Now I have to tie a string to keep it in his mouth, since he does not have have the best coordination to keep it in all the time. He sucks on it for hours a day now getting better and better at keeping it in without the string. NO I do not allow it to be in his mouth with the string when I am not in the room with him...or when he is in bed. He has gotten better about keeping his hand on it in his bed so it stays in though.

This new found love for the pacifier has given him hours of satisfaction. He is sleeping better and longer periods of time. He cries less (unless he has knocked it out of his mouth)...I'm sure later I will complain about his teeth :-P

Jacob and Moose A. Moose during nap time

Thursday, January 5, 2012

Vitamix Blender for G-Tube Fed Child on a Blended Diet

I was personally looking at a different brand blender...but a fellow mom with a g-tube fed child told me about this blender and the program they had to offer for g-tube patients :-)

I called the company today and asked about the program. I was referred to a sales representative. They took my information as a prospective buyer. They give a 25% discount off the Vitamix 5200 Blender. The retail on the starter package is $449.00 They sell the demonstration models (nor refurbished according to the person I talked to) He said these blenders were only used a handful of times during product demonstrations of the model. These demo models sell for $399.00

So they will sell it to you for 299.25 plus tax and they give free shipping. They apparently still come with a 7 year warrenty as well.

To get this you must
1. 1st contract them and given them your info.
2. They give you a fax number and then the name of the sales person
3. You must contact you (your child's) doctor and have them write a letter stating you child has a g-tube and that they are on a blended diet.
4. The doctor must fax the letter to the company with the sales person's name.
5. Once they receive the letter from the MD they will call you back and let you know it is received. At that time you may order the blender or you can get the sales person's contact info and direct extension and call them back to order it at a later time.

I have not ordered it yet. I plan to research it more 1st to see if I want this one more than the other blender I have been looking at. I also plan to call the other company to see if they offer a similar program.

One Step Ahead for CP child :-)

I just ordered these 2 items from www.onestepahead.com

Kinda excited to see how they work!

I know I posted about this already, but I think it will be exciting to see him swing!

this image is from www.onestepahead.com

I bought it in green :-)

Then I came across this: Wrap Strap Shopping Cart Safety Strap

this image is from www.onestepahead.com

I figured this might work well with the Charleywrap that I already have.
this image is from www.charleywrap.com

I'll make sure to keep everyone posted with these items in action should arrive in 4-8 days.

Tuesday, January 3, 2012

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 5 months 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. Ideally I would love to start preparing fresh food and pureeing it for him, but my blender is just not good enough. I am saving up to buy one of these:
Blendtec Total Blender Designer Series. This blender runs about $500 but is one of the best blenders around. I tried blending my own food with my currently blender and I could never get the pump to take the food...it always clogged.
So, we resorted to baby food. It is expensive, and probably not as good for him as fresh food, but 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:
Stage 2 baby food:
3 fruits, and 3 veggies jars (4oz each) occasionally I will add an extra fruit or veggie
3-4 stage 1 meat jars (2oz)
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.

Sunday, January 1, 2012

Hugga-Bebe Cushion

This is the most awesome thing since sliced breads for infants with developmental delays and CP.

Check this thing out. A fellow mom of a CP child posted this on one of our group facebook pages. I can't tell you how many times I used to shove boppy pillow, blankets etc it the jumparoo, restaurant high chairs, public swings etc to find something to help stabilize my son with poor trunk control. This thing would have been wonderful. My son is 2 1/2 and 27lbs. He is almost 34 inches long and I am considering buying it just to see if I can still fit him in a swing at the park in it.

What the website says:
Introducing the first infant support for baby swings, exersaucers, jumpers...even infant playground swings! This soft, thickly-padded wraparound prevents babies from slumping and slouching in all types of enclosed seats, encouraging good posture and core strength from the start. No more one-size-fits-all baby seats! Size adjustable; grows with baby, thanks to three sets of crotch snaps and Velcro® side straps. For ages 4 months and up. Machine wash. Imported.                                            

  • Winner of the iParenting Media Award

  • Much easier and more effective than stuffing rolled-up towels and blankets into baby seats. Works with activity centers, walkers, high chairs, park swings, and other baby seats (excluding cars seats).

  • Teaches baby to sit properly (with the pelvis in a neutral position), encouraging good posture and core muscle strength, which may prevent back problems later in life.

  • Adjusts to fit infants and toddlers

  • Front panel measures 13½"L x 10½"W; back panel measures 16"L x 13¼"W. Crotch strap measures from 7"-9", depending what set of snaps you use. Velcro® side straps measure 6½"L.

  • Made of microfiber; machine wash and tumble dry gentle