Thursday, November 5, 2009

Doctors Orders - HELP

I'm not sure how I feel about it all, now that I've been told by someone with "authority" that I should do it. And I trust that person, Daniel's pediatrician.


I use to half-heartedly joke about it, saying I'd love to do it, but now I'm scared! What if I don't do it right? I mean technically its not forever just this year. She said with Daniel's past illnesses already this year and the hospitalization, and the fact that he is STILL not eating good, the weight loss and the results from tests done, that his immune system isn't great. That if we sent him to school and all the therapies that we are putting him at risk. Especially with the whole swine flu and everything going on right now.

The thing about Daniel getting sick is he doesn't bounce back like the typical child. When he gets the simplest of colds, hes down for the longest time. A simple cold for a child with his immune system and the fact that he has cerebral palsy are not a good mix. Colds mean mucus in the lungs, high fevers, no sleeping, lack of a eating...alot of these things bring on the seizures that are so hard to control. Seizures that can be detrimental to a child like Daniel.

So I'm calling out to those parents who have homeschooling expertise....Where do I start, where do I get the resources. I know that there is homeschooling for a typical child and that would be overwhelming alone, but any ideas how do you do it with a special needs child? He loves to learn, but I'm not sure I know all the crafty ideas of how to teach him and keep him interested. What things should I be teaching him? AAAAAAAAAAAAAAAAGH!

Excited and scared, overwhelmed all in one. A ball of nerves! Now I have to still call his teacher and his therapists and get everything taken care of there. I'm going to miss his teacher cause she is awesome. I wonder if we can set it up where they come to the house, or perhaps she can give me weekly meetings and then I go home and teach that to Daniel.

The doctor gave me scripts for "home therapies" but I have no idea how to arrange that. I'm lost can you tell?!?! She calls him HIGH RISK for illness/hospitalizations. Sigh....

Sigh....I guess I've always thought about it, but never had the nerve to really do, its kinda like well I NEED to.

Then she threw out there too the dreaded Feeding Tube Issue. I so don't want it, and he is doing so well when he is NOT sick, but when he is I'm wish we had one.

This past time, if we'd had had the feeding tube we probably wouldn't have had the hospitalization because we would have been able to keep him hydrated. There are so many pros/cons of getting one. He so wants to eat, he loves tasting things, but the muscles in his throat/mouth just aren't' strong enough for him to chew the foods.

So calling out to all those who have feeding tubes....
What type do you have? what are your experiences and such.
I still want to feed him by mouth when we can but when we can't I want to use the feeding tube.
When we have meds we can use the tube. And I don't want a pump thingy at night, I just want to be able to pour it in there at a slow pace (what is that called?). Eventually I would like to be able to feed him real food that is blenderized through the tube. I would like it to not be a permanent thing, so that IF he is ever able to do it, we can get ride of the tube? Is that possible?

HELP!!! Please let me comments on any of the above subjects, I need help.


Kristi said...

I read your blog from time to time and wanted to comment. I don't know about the homeschooling stuff but my 3 year old used to have a feeding tube. The feed you are talking about is "bolus" feed. That is when you just pour it in at a slow rate. My son had the kangaroo pump. And yes when Daniel is able to eat enough by mouth it can be removed. My son could not coordinate his suck, swallow and breathe so therefore didn't take enough fluid in. But he had his removed after 6 months. Good luck with your decision.

Meadow said...

I don't know anything about homeschooling, but I'm sure you'll be great! I don't know if you ever read the pioneer woman's blog (it's fantastic), but she has regular posts about homeschooling.

I'm sure there are tons of other parents out there that you could find on blogs and listservs, just do a little googling.

You are doing what is right for Daniel, and that is what is most important. I'm sure you'll BOTH learn a lot, and do a lot of bonding.

Colleen said...

Having a feeding tube, you can still eat(if the child is able to). For my daughter she got her mic-key button type when she was 3 because she wasnt gaining weight and took forever to feed. We would let her eat her meals and then would give her formula through the tube bolus. When she turned 6 she started having bad seizures and the feeding tube was great...we ended up having to go to just tube feeds as she lost all her skills and was afraid to eat orally. It was nice already having the tube and knowing how to use it. Having a pump is nice too, so that you can be hands free. It isnt necessary though if you can do bolus feeds.

for school...I havent homeschooled, but my daughter was signed out with a doctors order to be homebound. With this drs order we were able to call a new IEP and get all therapy done at home through the school system. She also had the teacher come out twice a week for an hour to do activities with her. They gave us things that we could do at home.

Jamie said...

My daughter just had her feeding tube placed this week on Tuesday. I dreeded it for awile but now that it is done my only regret is that I didn't do it sooner. It is easy to manage. We are doing some bolus feeds during the day when she won't eat (which is most of the time) and then we run the pump at night. I am posting as much as I can about our experience as we go through it at

I don't know about the homeschooling thing but I wish you the best of luck!!

Karen said...

Do you have cyber school available? The charter school we have here has a class for special needs kids and it works great for a friend of mine. It might be something that you'd want to look into. Plus, with charter school, they do all the lesson plans and preparation for you.

Amy Genn said...

I sent you an email about feeding tubes...with pics :)

We are seriously considering homeschooling for Eli, also, because he is so medically fragile.

we've pulled him out of preschool because of swine flu worries.

We Can Do It! :)

Rich said...

I agree on the Cyber School... It's home school, but in a way things are still outlined by a teacher lesson for lesson. I have a family in my judo class that home school's 3 children. Our judo class is more or less his gym (still a requirement).

I'll pass her your info along to her, maybe she can help.

C said...

Wow -- this is a lot to take in on short notice, huh?

Our school district has "home hospital" and offers that when a child is deemed too medically fragile for the classroom. I pushed for it with Q but even the doctor's note wasn't enough to get it. So Q is going into the classroom when other kids aren't there. He's supposed to start next week with a few kids who are all well. I cannot tell you how completely twitchy this has made me, Melanie. He had the first H1N1 shot last week and has been just a whiny little bugger since about 24 hours after. I don't know if it has anything to do with the vax, but he's having some sort of low grade fever/small cold that has him up a lot (til 5 Thursday) and I'm about fried. This is typical for his winters -- lots of fending off bugs and general unhappiness. I don't know what I'll do with him if this keeps up. And we might end up being too ill to take on the classroom as things are, I don't know.

I'm glad you have a doc who will push on this for you. I'm glad she'll speak up about feeding too. I don't know what the right answers are there, but I am absolutely certain that by writing this post, you've guaranteed that the answers will come.

In your shoes, I think I would first contact the special services person at your school district and tell them that your doctor has ordered Daniel home for at least the rest of this school year. Offer to share fax numbers and sign consent forms to get that process rolling. They should have a touch screen and all kinds of stuff that should just come to your house for his use. You might end up with a teacher coming in for a few hours a week and therapists visiting too, with lots of supplies and equipment provided. Then you'd be responsible for carrying out some of the educational games and reading to him, pretty basic stuff I think.

Our school district has a list of web sites for games that work really nicely with the touch screen. I'll see if I can get a hold of that for you.

About feeding. Gosh, I just don't know. Q is in the 10-30% range for weight and 30-50% range for height. I worry about this too. Weight gain, tiredness, immune system effectiveness -- how much of all this is tied together? And how would a g-tube work with the oral Baclofen we're looking at trying in January?

Too many questions and not enough answers and now I'm filling up your comments space. I'm going to go looking for some book titles that I've heard about recently -- about homeschooling a SN kiddo.

Hugs to you guys as you think on all this. Whatever happens, you very amazing people will find equally amazing solutions and it will all work out.

C said...

This message board is good:

And a post with book titles: The original poster asked for titles re: Asperger's, but there are a good selection of title there that or more or less generally about homeschooling with SN.

If I find more I'll let you know. If you still have my email addy, please do use it anytime. I can't remember how I had you "filed" and I'm not finding it in my contacts or I'd send you all this via email.

Claire said...


For home school help try these blogs:

Parker, the boy in the first blog is also medically fragile and has a feeding tube. and has a home-made blended foods through it. tia from this blog has lots of experience with feeding tubes.

As for gastrostomy (through the stomach) feeding tubes, some have a long tube sticking out (PEG)and some have a little valve that sticks out just a little (e.g. mic-key button)

Yes, you can just use a feeding tube as a back up and for meds, many people do this.

A pump is good if you have a very small stomach or reflux a lot because it can be programmed to run very slowly. It doesn't get messy, it just slowly squeeses the tube to push the fluid through.

Bolus feeding is good too and a bit easier and faster and better for thicker homemade feeds and medicines.

Companies that sell special blenders for puréed or blenerised diets often offer a discount if it is medically necessary e.g.

The feeding tube can easily be taken out, it is not forever.

Good Luck

Claire said...

Sorry, Tia's blog is

MeghatronsMom said...

I, like Colleen, was going to suggest homebound school. It can be written into his IEP. GL! Can't wait to hear what you decide.

Erin said...

Hey Melanie. Wow, lots of stuff going on. Praying for wisdom for you to figure out what will be best for Daniel, though I have no doubts you and Lonnie will do what is best.

Just wanted to drop a line of support and also to let you know that I read the blog of a mom who homeschools, and may be a resource. It is Ashley and Clayton from the CP moms group and her blog is at She hasn't done it for a week or so, but she usually posts about the unit they are currently working on and resources she uses, etc.

kate c said...

Hi Melanie - my son has the mic-key button. We have no problems with it whatsoever. You are very lucky that Daniel eats orally. I don't think he would lose his skill with the g-tube if you kept it a priority. Also - it is easily removed & I believe the site starts to heal itself within 48 hrs. My son contracted a strain of hand, foot & mouth last month & his dev ped told me it would have been devastating for us if he didn't have the tube. We were able to still feed him & give him loads of pedialyte for hydration. Besides that, the tube is great for meds. We have Miles on a blenderized diet of organic fruits, veg, protein, whole grains & lots of good fats & oils. We supplement with Resource. There is a great blenderized diet yahoo group if you decide to go that route. Good luck with your decisions - I know this is tough one.
p.s. I finally emailed you back about the Resource... let me know!

Katy said...

Hey Mel. Charlie had the Mickey button when he was a baby. It's very low-profile. Surgery WAS painful, but after reading/talking to some other parents I think that's because the docs were not aggressive enough with the pain meds and we really didn't know any better. Don't be afraid to ask for the big drugs. The feeding tube does make meds a breeze.

I think--but could be wrong--that if you want your child to eat by mouth, then a lot of parents just supplement oral feedings with the pump at night. Charlie is like Daniel and being sick does take a serious toll. It's just harder on these kids to bounce back from stuff.

Good luck! I'd love to hear about your homeschooling--I have no doubt that you're creative enough for it!

Jennifer said...

Hi Melanie,

I just got done being sick with Swine Flu and yes it is something that Daniel nor Tyse want to get. It's awful which then lead to an ear infection UGH!

Tyse has a PEG feeding tube. He's isn't that common as the MIC-KEY but I like it because I don't have to change it and it's been pulled and yanked and knock on wood hasn't come out yet, but if it does then we go straight to children's hospital to get it put back in.

If you do get a tube there is any awesome blenderized diet book to purchase. I would recommend starting on a blenderized diet. It's awesome and you can add so many things to get him healthy.

I got my book at under the Catalog and then books. The book taught me so much plus you can call the author Suzanne Evan Morris and talk to her whenever you want. It helps when you have questions.

Hope that helps!

Jennifer said...

Oh yeah, we also have a Vita Mixer too to blend his food in. It cost around $500 but we also use Magic Bullet when we travel or at relatives which works well but cannot blend meat like the Vita Mixer.

The HomeScholar said...

I have some suggestions! I homeschooled my boys for years, and it was the best decision I ever made.

When I consult with new homeschoolers, I often point them to Sonlight curriculum first, because it's the easiest for beginners to use. Here is a link:

My friend just wrote a FREE book about choosing curriculum, and it's great. She has other resources for beginners as well. Here is the link to her book:

You can do it! The love you have for your child will ensure success!


Anonymous said...

Throwing-in my late words of support for your ability to manage homeschooling. You have already received the best support/advice from other mothers.

The homebound services from the school would give you some help, and you can do the teaching in-between their visits.

Can you ask your school PT/OT for their recommendations for home health agencies? Then you can take those scripts from the MD and possibly get some home services. The agency will submit a plan to your insurance to receive authorization for home therapy. No guarantees, but that is how it works in most places. (Can't remember what state you are in.)

Best, Barbara

ParkerMama said...

We are homeschooling Parker with the help of a once a week preschool teacher.

Best decision we have ever made.


I'm loving it and Parker is flourishing!

ANewKindOfPerfect said...

I can't answer the homeschooling questions, but I can offer my experience with g-tubes.

My son had a g-tube placed as recovery for a fundo, 7 years ago. He had it removed 6 months later. It was removed, and pressure bandaged. His stomach was wrapped tightly. That was it! Two weeks later it was completely healed and closed. So yes, it can absolutely be removed if Daniel doesn't need it later.

With a g-tube, the child can definately eat by mouth still! It will not affect that at all. It will just give you a way to increase his intake if need be. It definately makes taking meds easier!

My Peanut has had a MicKey button since she was 10 months old (over 5 years ago). She doesn't take anything by mouth, but that is not because of the g-tube.

As you said, with a virus you can stay home from the hospital most of the time because you can hydrate him easier.

It's a hard decision, but it is reversible and it can definately be a life saver!