Parker was almost up to 37 pounds. So very close. The weight gain happy dancing was in full force.
Then he got sick.
Pneumonia. Pseudomonas. That damn Adenovirus that came with a 12 days of diarreha and zofran just to keep the meds down.
Before we we knew it Parker had lost down to skin and bones. 34 pounds on Parker comes with hip bones sticking out and ribs you can count from across the room. It comes with wrist bones and knuckle bones sticking out so far it makes this Mama want to weep.
34 pounds means that when I put Parker’s size 4 pants on, they immediately fall off, requiring me to to dig out the 3Ts and dress him in those.
One size difference might not seem like a lot…..until you remember that Parker just turned 7 last month.
I find it highly ironic that while my kid can lose a pound just by blinking, I can gain 10 over the worry of that pound just lost. You’d think there’d be a provision in the Special Needs Mama’s Bill of Rights that said worry will only make these Mamas skinny.
I’ve worked Parker back up to his blenderized diet. Whole foods. Today’s blend included organic nuts, organic olive oil, full fat goat milk kefir, organic fruits, veggies and grains.
People tend to think I’m kinda nuts when I tell them how much of our grocery budget goes towards Parker’s blenderized diet. Why don’t you just get the free stuff provided by Parker’s waiver, they ask.
Well, I could. Except: 1. Parker never gained well on canned formula. 2. I don’t believe that a body was meant to do well eating the exact same chicken, green bean, and high frutose cranberry cocktail day in and day out.
In the gardening season the cost isn’t as high as I can just go outside and pick a lot of what I need. It’s winter that things get costly. For me good nutrition is the first step to good health…and good health is what we spend so much time praying for over here.
I’ve been keeping the heat turned up higher. I’ve been dressing Parker in more layers too. I can’t risk him burning off calories trying to keep himself warm. However I think I’ll be gone for awhile when the next heat bill shows up. Reed tends to get a wee bit touchy over high utility bills although he understands that it can’t be helped right now.
I’ve heard of some states that pitch in on utility bills for kids who need energy sucking technology like concentrators and vents to keep them alive.
Yeah. Utah ain’t one of them.
Houston, we have a problem.
Who else worries about weight gain and their child with special needs?
What have you done to help your kid gain weight loss after an illness or surgery?
We’ve got almost three pounds that Parker’s boney little body needs to reconnect with….the sooner the better.
I wish I could donate some of my extra layers to parker
I have a few too many pounds to spare. lol My son who is not special needs is tiny and turns 6 this month. He weighed in at 36 lbs with jeans, shoes and a sweatshirt on the other day. I am glad you have the ability to stick those extra calories right in his tube! Im trying to get mine to eat more. Good luck on the weight gain!
I wish Sam could donate some of his weight to Parker, our problem is on the opposite end. With Sam’s limited mobility the weight is adding up. I would love an indoor pool for Christmas…and you thought you’re husband got touchy about high utility bills…Jeff just rolls his eyes at me. Guess I better get used to spending a lot of time in the YMCA pool…just not liking the germ factor.
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*Sighs*…after reading your posts on Parker’s diet, it makes me feel like I haven’t tried hard enough. She is on a metabolic formula. She weighs a whopping 28lbs at 5. Her hips jutt through her skin to where she has bruises on her hip bones most of the time. We are able to count her ribs and vertebrae. Same scenario, each time we get a small gain she is sick and sayonara to a pound here or there. If I find a magic answer, you’re first on my list.
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Tammy and Michelle,
We feel your pain….literally. This has always been one of our biggest issues. Between allergies and the inability to digest protein, we are stuck. Since we have moved, Christopher suddenly gained 4 lbs!!! He’s up to 28 lbs and will be 8 years old on the 19th. We thought he was going into heart failure again. Sigh….
Also, to put that in perspective, after his first OHS he was 10 months old and 21 lbs, 9 oz when discharged. We give new meaning to s-l-o-w going! LOL!
BTW, I have enough extra for fat transplants to a small country…..just sayin’
Steph
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Hey Tammy-Have you ever tried coconut milk instead of goats milk? I know it has a higher fat content than the goats milk. Just a thought. The family that I’m currently working with has a daughter who is teeny tiny too and we switched to coconut milk and have noticed an improvement (she can’t have any lactose at all though) Wishing all my Christmas calories Parker’s way! -Laura
I totally understand this issue. I also recently did the happy dance when we hit 37 pounds at 6. Then she got pnuemonia and we are down to 35 again. We have been there almost 2 years with out moving. My daughter does not have a tube, her doctor will not give us one, so I have had to try to get her to eat all the extra calories she needs, her nickname is pickiest eater on the planet. The thing I have had the most luck with is MCT oil. It is the oil in Coconut oil, just without the coconut taste. It really is tasteless and I can add it to anything. I cook her eggs in it. I have been able to add several hundred calories a day with it. MCT stands for Medium Chain Triglycerides. It is a very easy to digest fat, so she is not using as many calories trying to digest the fat and getting more for her money. The other thing I do quite a bit is bake pasta in cream instead of boiling in water, this also adds a ton of calories. I also have had great luck with freeze dried eggs. I can add them to almost anything and get her extra protien calories. Protein is where I have the hardest time with her, so the egg powder is wonderful.
My 6 yr old has just hit 36 pounds, too! He is below the 5% for weight (may actually be off the chart). He’s a picky eater and has some sensory issues. Everything the doc suggested seemed to be stuff he won’t eat. We had to put him back on whole milk and add butter and olive oil to his food, too. Still working on how else to fatten him up, too.
Luke has gone up to 50 pounds, down to 46 up to 48 down to 47 up to 49 down to 47, yep we are on the same roller coaster ride. It’s so annoying expecially when I like you are feeding him blenderized food. One thing we’ve done recently that has helped a tiny bit is increase his feedings all through out the day and night just adding that extra 50 mls each feeding has helped. I’m hoping we can keep him in the 50’s for awhile, since he doesn’t walk moving and carrying him everywhere is a bit taxing on my back, oh well if it’s not one thing it’s another.
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Hello, I was hoping to get some recipes or advice on how to get my child to gain weight. He has Muscular Dystrophy and i am now researching pre made high calorie drinks. We have tried making our own but cant seem to make them high calorie enough. Think he needs a feeding tube. advice would be helpful. How is Parker doing?
Stephanie
I think you already know any weight gain secrets I might have. I have one child who came to us at 4 years old and a whopping 27 pounds. He was a ‘failure to thrive’ child with trauma issues and huge anxiety. Then we have another child with a form of muscular dystrophy who has trouble chewing and swallowing and needs a high protein diet. This year has been especially hard. We have had several rounds of strep throat, ear infections, pneumonia and croup. No one is back up to their starting weight and it’s not looking good. Another ear infection diagnosed yesterday and the 9th prescription for antibiotics. Ugh!
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Joey (age 6.5 yrs w/ Ds and IA) recently hit 32#. We were SO stinken excited. Someone has to be always right beside him when eating to push him along or he would be done after a few bites unless it is cereal or ice cream or other junk and of course his favorite food of apples…too bad not any good fats in those
I’ve had him tested for celiac a few times…took him to specialists but everyone refuses to do further testing. He is a healthy kid though so I had to hand him over to God (which God wants anyway…haha…but I admit that I do like some control) and ask Him to protect Joey as I don’t know what else to do. I read others talk about coconut oil and milk both of which are staples in my kitchen. Nutiva brand is what I like best….you can buy it by the gallon and it actually has some of the same stuff as human breast milk. Oh and when Joey has gotten sick the weight melts off like a snowman in June and it is so hard to get back on. Shopping for Joey’s clothes is NO easy task and when I find pants that work I buy a few in different colors and I can never buy outfits that come with pants and shirt. Oh, and I love that last picture. I have the exact same kind of Joey….playing the Wii…one trying to hold his pants up and another just letting them go and fall to his ankles….after all the kid had an obstacle course on Wii Fit to conquer. Good luck with getting him “fattened up” again.
Raddy has a hard time gaining weight but it is assicated with his surgeries. He does not absorb things well. He is on 10 cans of pediasure a day and some (very little) food by mouth . The surgeon (you know who) doesn’t say much about it but the doctor does. They had to cut so much of his bowel out to fix him after all the surgeries that he has “short gut”. Crazy when a 5 1/2 year old only weighs 32 pounds. He is still in size 2t pants around the butt but 3 in length. My other kids weighed that at a year and half. He looks so bad when his clothes are off. You don’t know how many people want to contact someone because we are not taking care of him. I can see it in some cases but when you are doing all you can………Such an ongoing trial.
Hi,
I really appreciate how you doing your job so amazing. I’ve always admired mom and parents who put extra mile just to attend the needs of their special kids.
Lady
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