Ephesians 3:20 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"

Wednesday, May 21, 2008

Advice Needed

Hello all....Sorry for the delay in posts.

So Caleb is continuing to recover from his cleft lip & nose surgery. We have to massage his lip so it desensitizes and hopefully prevents it from scaring.

The reason why we are posting tonight is to try to get as much advice as possible. As most of you know, Caleb spent the first year and a half of his life in the hospital. Therefore, he was in a crib and is behind in his physical development. Caleb is almost two years old and still does not sit up on his own, crawl, drink, or eat baby foods. We know that he is delayed due to living in the hospital and this can effect the sitting (however, he can sit up unsupported for hours). He just can't get himself up. He also has CHARGE in addition to DiGeorge (the immunodeficiency) and we have read that CHARGE delays/effects eating habits. He ate completely by some type of tube (NG, Mic-key button, etc.) until about two months ago when we were given the go ahead to try baby foods. He still gets all of his nutrition via IV and we are doing continuous feeds through his Mic-key to keep his LFT levels down (Liver function levels - keeping his gut from going to sleep). We try to feed him and he will try to prevent anything from going in his mouth. Then, once you get a drink or food in his mouth he will not swallow. We know he has an oral aversion, and know there is not a quick fix. Here is our dilema...we cannot bring early intervention yet into the home, as it is not worth the risk of what we could be exposing Caleb to (i.e. cold, flu, etc.), so we are turning to our fellow bloggers for any advice on therapy that may have worked for them in any of these areas. Please post any ideas that you may have, we would definitely appreciate it.


KT said...

Can you consult ST for eating over the phone or via email. You can let the terapist know what is going on by videoing his meating. He/She could give you ideas from your comments and his/her observatins. I know this is not ideal, but it would give you some ideas and not have the extra germs. Good Luck!

Katie King

Eva Nichole said...

Ok 1st, feeding it can take some time and some alot of waiting. All you can do is try, try, try. Its like keeping their glasses and hearing aids in just keep trying. I know sometimes I take Eva's hand and put it on my cheek and let her feel the way I chew and swallow on my neck. Eva is only eatting anything I mush up for her so we are learning to chew right now. As for sitting, crawling, walking, standing just work with him on it, on your own, you can stand him by a couch or chair and help him strengthen those legs. Eva is still not sitting on her own either and she had EI for 3 years. Work on lots of tummy time so he can lean to crawl, most kids hate it at first but just doing alittle bit everyday can help.
I hope you can get some therapy in the home soon to help you I know its hard to do it on your own. Without some of the tools they can offer I know its hard.
Maybe call your EI group before he ages out and let them know your situation and see if there is anything they can do to help either on the phone or internet.
Good Luck!!
Crystal and Eva

Hollie Adams said...

With the eating. Savannah also has oral aversion and we're currently working with Easter Seals on that. I suggested to Jen some Nuk teething sticks.Can't find them online, but she's going to check Babies R Us tomorrow. Never have been able to find them in the U.S. my sister actually brings them from Austria and is bringing a brand new pack June 4. I would dip that in the baby food and hand it to Savannah and that is how she finally started taking baby food. It took 3-6 mos. before I could then start giving her the tiniest amount on a baby spoon. So keep trying and don't get frustrated if it doesn't work right away. Also any time you can put the food on a tray and let him play in it, that will help. I usually do that at dinner since a bath usually follows. Also, the teething stick will help to introduce new texture into the mouth. I was told that solely breastfed babies (which Savannah is) often have oral aversion due to the lack of textures they've experienced in their mouths. To that end, a simple orajel thumb toothbrush to massage the inside of his mouth may help to serve that purpose. Also, presenting the food from the side as opposed to the front was another Easter Seals suggestion. And finally lemon pudding or lemon luigi's ice (the lemon is supposed to do something to the salivary glands to get the mouth more receptive to food). Sherbet icecream and vanilla pudding might be good too. They are two of the only things Savannah consistently eats. Also, once I found a baby food that she liked (apple delight dessert and sweet potatoes) that is ALL I offered her for a while so she always new she'd be getting something she liked. Then after a while, I'd gradually introduce something new at the end because once she tasted the new thing, she wouldn't eat anymore cause she thought that's all she'd get. Eventually she took the Gerber puffs but after much time and re-introducing. And also not until she was swallowing the baby food a little better. She also gagged on everything we put into her mouth even if it was the tiniest amount. If I think of anything else, I'll pass it along. As for the tummy time, both my kids hated it. I tried to do it in the crib (since more comfortable than the floor) and put a toy across the crib he likes so he might be motivated to move toward it. Hope this helps!Lots of prayers, hugs and kisses your way!!

Heather said...

Hi there! I've been silently reading your blog from Max's. Your little guy has touched me for some reason!
My son had a lot of issues regarding mouth organization and textures. The teething sticks were great b/c I could just hand them to him and he could explore his mouth on his own, and with my guidance. Putting something yummy on it sometimes helps. I got mine from a 3 pack of infant toothbrushes, and then I got a couple from different therapists (speech and occupational). They would help with the desensitizing too.
Also, putting foods on his lips so that he might lick it off (I don't know if he's ready for that after surgery) but then he doesn't really swallow anything, but the taste gets in there.
We still struggle with eating, but now I think it's mostly stubborness. Good luck!

Heather said...

Oh... look them up online for Nuk teething brush. But I bought mine like at Target or Toys R Us as a 3 pack of brushes. http://mealtimenotions.com/ProductsTools/ProductToolsNukBrushes.htm
That link is the kind we got from therapists.

holly warmus said...

Hey Sarah, What the therapist did with Reid was the infant toothbrushmthat you put your finger in and just rub it in his mouth it just gets him use to a texture. A teething ring if he will take it is also a great idea they have ones now that vibrate and have differnet textures on each end they work great. We used the oral swabs and tried different babyfoods on them and would use that to swab his mouth. The best thing that worked well after he got use to them was dum dum lollipops, he's unable to bite them at this age and he won't keep itin long enough to break any off, so they're safe. The therapist just broguht in a big bag and we would try different flavors. He didn't like any at first but after a short while we knew which flavors were his favorite. The therapist will also tell you to let him put anything safe in his mouth. I know that is a little nerve wracking so we bought toys designated just for that so they were kept exremely clean to avoid any infections.
Its a frustrating process but he'll get there. Good luck hope some of this helps!!!

Lisa W. said...

I just wanted to say NEVER give up on feeding - our daughter just started eating last year at age 9 1/2 after being totally tube fed for that long! We just used a little finger toothbrush with her when she was young to keep the stimulation of the area going, she never really had much of an oral aversion, just a bad swallow, we gave her suckers and things that she could suck but not really have a whole lot to swallow (dentists out there around the word are cringing but hey, it was all she could have). Ice cream was one of her favourites early on, I don't know if it was the cold being so severe that she could actually sense it better and swallow it better but she did.

Good luck with it and my best advice is just be as patient as you can. We never pushed Kennedy, just offered things and let her dictate when she was ready. It took a long time but it all worked out.

renee said...

In my preemie group we have alot of kids with oral aversion. Parents were told to buy an electric toothbrush or finger massager and use it on the lips and cheeks to help desensitize them. My thoughts and prayers for your handsome lil boy!!!!!!

Anonymous said...

Hi Sarah.
I am sorry that I do not have a suggestion for the oral aversion, but I wanted to tell you about our experience with Early Intervention. Birth to 3 has been great for Merrick. Merrick is delayed from his fractures. He is 6 months and working very hard to gain strength in his neck. Anyways, let me get back to my point. Our PT and OT from Birth to 3 are amazing! I would bet that they would be willing to work with Caleb via phone, videos, or how about a web cam! Then you can see them, they can see him. Maybe it's a shot in the dark, but I know they are always thinking up things for Merrick and we love them. Let me know if I can try to get something arranged for you guys to meet.
Big hugs for Caleb!
Lara Graves