It’s no secret how much I hate the cardiologist appointments that involve echo’s and ekgs for Parker.
I’ve also been very open about the handfuls of nerve meds necessary to get this Mama through a right heart cath.
It’s a very good thing that these events don’t take place on a weekly basis.
Or else Reed would have had to commit me long ago.
Just keepin’ it real, people.
My weekly dreaded moment would have to be Parker’s Tuesday Weigh In.
Parker has been holding steady right at #29.25 these last few weeks. Granted he has been dealing with a rotten sinus infection. But it is finally clearing up and I had great hopes for today’s weigh in.
Alas, it was not to be. Still stuck at #29.25
Besides the fact that my 5 year old can still fit on this scale (sigh) look at those ribs (double sigh).
I know a lot of parents of kids with Down syndrome who have struggled to get their kid to gain weight.
But still.
The funny thing is Parker’s thighs are exceptionally filled out and pretty muscular. He even has a little bit of a tummy.
The Hero is growing taller by the day. He’s sporting almost 39 inches in height. He’s averaging close to .5 of an inch of growth a month.
Parker looks healthy. I think the Nissen was a fantastic move for him. His doctors have been constantly commenting on how good my kid looks these days.
But those ribs. sigh.
In typical Hodson boy fashion, Parker is one extremely active dude. He’s always on the move, ready for the next adventure.
I’m going to be playing around a bit with his blenderized diet. Which is perfectly fine. Because that 1200 a day calorie intake is just a starting point. If the kid needs a few more calories, the kid needs to get them. And I may need to up his fats on the days that he gets lentils or legumes for his protein. Both of these are basically fat free.
Since I’m being so transparent here, I should confess the two mornings this month where I have opened the fridge to find the last of the bolus feeds from the day before staring me in the face. Reed thinking that I had given it to Parker and me thinking Reed was going to give it to him.
It doesn’t happen often, but happen it has. It is one of the downfalls of tag teaming Parker’s evening feeds. But it is a downfall that stops now.
So for all of you who have emailed wondering how I manage to do it all….gag…cough….cough…
Now you know.
I totally don’t.
What about you? What are your areas of weakness in raising a kid with special needs?
My weakness is leaving him on the floor so he can learn how to move. He complains and I give in. Consequently he’s almost four and has no idea what movement on his own really feels like. I just don’t like to hear him complain!
Trying to figure out how to balance speech, occupational, physical, and developmental therapies for The Love Magnet while trying to make sure my three boys don’t get neglected. They all have sports, scouts, and one has tutoring for his dyslexia/disgraphia. Add school for me and a house that never get completely done all at once……..no, I have proven that I can’t do it all either.
But I do fit in date night. I have to keep my sanity somehow.
{{{{hugs}}}} to you, Tammy
Twitter: MommaHopeful
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I’m totally with you. Jack weighs exactly the same as Parker…and has for 13 months. He’s grown an inch this year, but we have those ribs too. And there is seemingly nothing I can do about it.
Prayers…and love.
Twitter: kadiera
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We don’t do spoon feeding at night.
Alex eats like 1/2 a can of yogurt for nurses and therapists during the day, twice a day. But we were so frustrated with feeding, and we’re so tired when we get home (and he’s so tired)….that it’s not worth fighting over.
If he’s in a good mood, or a chewing on things/biting people mood, he gets finger foods. If not…we have a bottle and let it go.
Should we work harder on feeding? Probably. But we’re barely keeping up as it is, and I’d rather not fight with him when we’re all tired and cranky.
My weakness is that I probably don’t do as much therapy with Evan at home as I should. I have been dragging my feet because there is always so much going on at school that I want him to have time just to be a kid and play on his own with out any design behind the playing.
I totally cater to the sensory issues of one of my girls way more than I should. It’s just so much easier to let her wear what she wants and give her the color plate I know will make her happy. Besides not helping her develop coping techniques it is also not fair to her twin to let her sister always have first pick.
I so hear you on the last feed! That happens to us every once in a while too. But, you know what? Our kids are still alive and we’re doing the very best we can.
Food issues are so stressful. It’s never Mason’s Down syndrome that sends me to tears—it’s the stupid corn intolerance and citric acid intolerance that means he has a list of about 8 safe foods, and Ramie’s evil peanut allergy—those are the things that drive me to my knees.
Thanks for being so candid. Prayers!!!
I struggle with discipline consistency and feeling in a family of 6 that I do it often alone, but reality is I don’t. I do have wonderful nurse (lucky me) that work with him about 8 hours a day and the rest is on me. Lennon is not going to school currently due to a new (so not needed) diagnosis of liver disease that he will be facing another transplant at some point. Lennon often gets free rain with a lot of things. Juggling school, paying attention to my other kids and self-employment often wear me down. I am consistent with feeds and meds simply because I can’t or rather won’t rely on anyone else to do it..could be trust thing. I am often over protective, but I think you said once that “you kept parker alive” by doing something specific..that is what I do with Lennon. Acknowledging that we are weak at times gives us reflection of our own humanity and great insight.
Oh… we sure know how you feel about the weight gain issue. Justin has been hovering around 18-19 lbs. for months… almost a year. It’s crazy…
My weakness is putting all my spare time into working with him. It’s harder than I thought. I am a mother of four and he is my youngest. I feel like my first born had SO much of my attention. Luckily he has 3 awesome sisters to help out, but I do feel guilty sometimes. Oh.. and one that I can’t control and wish I could was therapy. I. just. can’t. afford. it. Makes me sad… BUT… we are doing The Best We Can!
I can relate to the weight gain issues! One of the reasons my kiddo still has an ng tube is because he needs to gain weight. We have been using an ng tube for over a year. We are now contemplating getting a g-tube placed. Any advice?? He only gets feedings at night with his tube and it’s pedisure with some water. During the day he mainly still eats stage 3 baby foods. I think he has a food aversion to different foods. He will eat normal food once in a while but not enough to sustain him.
Tammy, to me, you are amazing! I have five boys as you know. And I seriously dont know how you do it! Sometimes I feel like i am going insane, lol! I love Parker so much!! I Want him to gain weight too
He is such a doll. I am glad he is getting taller and hearing he has a little tummy makes me happy 
You are all always in my prayers!!
Much love to all,
Amy
My son used to be tactile defensive about any food in his mouth and he lived on 8 cans of Ensure (and only CHOCOLATE Ensure, not the generic substitute.) He took it to school for lunch and to family gatherings, like Thanksgiving. Until he was 8! Now, he is a strapping 18 year old who eats me out of house and home. Sometimes I miss the Ensure days, (at least that was paid for out of his insurance!!!!)
Lindsey Petersen
http://5kidswdisabilities.wordpress.com
Hi Tammy. Jack is just like Parker in body type I think. Those ribs!!!!!!!!!! Jack is six and weighs 34#. He hasn’t been through all of the medical stuff Parker has. He’s been through alot of things… but not all Parker has. But he’s got that same…. cute tush, ample thighs, bit of a belly and those skinny ribs!!!! His shoulders have always been pretty delicate and his little arms too. He’s gotten a bit taller and a bit more filled out in the last year and I want to watch that he doesn’t get too plump down the road as many kids with DS do. But for now… my ash blonde blue-eyed Jack seems alot like your sweetheart. I really think it’s party basic body type and part Down’s and perhaps part …. well they’ve both struggled with illness…. we had Jack’s genes tested extensively… maybe they just inherited certain weaknesses along with certain strengths. God sure does want them here for now doesn’t He?
And that’s a blessing. And by the way…. I don’t know how you do it… feeding such a large family. My energy is running so low lately. Maybe your kids all help alot??? I have one teenager at home and she is very helpful…. but Jack takes ALOT of our energy and time. Sending BIG HUGS your way!!! Love In Christ, Ali in IL
Tammy, my healthy “normal” child weighs 24.5 pounds at two months shy of age four. She was IUGR and early but still, my healthy child only put on one pound in a year, and is now only 5 pounds bigger than the 18 month old baby with CP. So as a mom, do I just suck at feeding? I try to tell myself no, it is the work of my skinny husand’s skinny gene pool. And my house is a sty and I never give the older child enough attention while I chase the babe around doing therapy maneuvers. We all need to learn to give ourselves a break, as we are indeed only human.
I think you rock!
Twitter: mamikaze
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Parker & Bear are just a few months apart. She’s tall (44 inches) and not keeping weight on (43 pounds on the scale yesterday) because of her meds. We’ve been able to avoid a g-tube so far but it’ too the point that if she grows any more without gaining weight, I’m going to request one so I can stop worrying.
I let her eat with her fingers at home. She’s just barely at a good weight, so I would rather have her stuff her face whatever way gets the food down her gullet may fill out her skeleton.