Lori (SH’s mom)

[Anonymous]

Lori

So funny… so we have been doing some of the exercises that you suggested with Matthew and guess what… he can now go from standing to sitting (no idea why this guy does it all backwards) but i guess that is a good sign? he holds on to his stroller or the fabric in sofa or the exersaucer and he just sits whenever he wants!! Also good news is he is trying to pull up all the time the same way. He is having a hard time with bending the leg though…. he can pull himself to standing in the crib but that is just with his arms, ie no real help from his leg… he does go and bend his leg when he wants to get up but for some reason, as i try to push him a little or help him out his leg comes back infront of him…..but i will keep trying the exercises that you suggested… so thank you!!

Oh yes… and the other day i was preparing his food and he was sitting in the high chair and was crying and then he stopped… so i turned around and guess what… he was drinking from his bottle!!! The guy will never ever hold his bottle for me and he managed to get it from the other side of the tray, with both hands (it had 7ounces in there so was heavy) and put it up to his mouth and drank for about 10inutes (problem was he was getting a lot of air) but i think that he was thirsty!! He has done this a few times but the second he sees me, he drops the bottle and wants me to hold it???!!!

Anyway – sorry about rambling… wanted to say thank you for exercises, i guess they do work!!! Also, we have an appointment to see a physiatrist on the 24th of july ( i was speaking to some Early INtervention agencies and they said that these doctors are best for movement… so we got an appointment at a clinic)

[Anonymous]

Thais, that’s great news! I’m so glad to hear that he’s moving. I wouldn’t worry to much about the way he’s doing it as long as it gets the job done. But that’s just my opinion. I believe that there’s a pretty wide range of normal, not just one way to do things. And the more they do it anyhow, the closer they all gravitate towards the typical way anyhow… it’s almost like it’s preprogrammed into them, and as the right muscle groups get stronger they don’t have to compensate anymore.

Regarding the leg coming out in standing, you can use your to give his leg some stability and your thigh/knee (if you’re kneeling) to block the foot (if you know what I mean).

As for the bottle drinking, that’s hilarious! And amazing! I’m actually quite concerned about Hailey b/c her eating/tasting has gone downhill… very small volumes of intake. I know that I have to cut out some formula, but I’m waiting for the feeding doctor to get back to us as well on how to do it.

Good news about the physiatrist. Are they also going to send you a physiotherapist. I don’t know if it works the same way in the US, but in Canada, the physiatrist knows the medical part, but not so much really (if anything) about the therapy needed to progress movement.

Anyhow, it sounds like Matthew is doing great on his own. Sometimes they just need a little guidance and practice, and then when they get one piece of the puzzle, it’s like a lightbulb goes off that tells them how to put all the other pieces in place.

Thanks again for the update.

s&h’s mum2006-6-24 11:59:26

[Anonymous]

Sorry to hear about Hailey… hopefully there is a way and she will get there… i know that it has been a long year but I know Matthew is Matthew and Hailey is Hailey and they will get there.

Thanks for the tips again… trying ot do it and i think he is getting it. Just that he will try and when i try to give him a hand or little push he lets go! Oh well.

The physiatrist is on our own (EI will not do it as part of the eval). I am having some issues with our EI coordinator. They keep calling me about agencies i know nothing about so i asked the lady to just go ahead and set it up with whomever is available. So finally on Friday she calls me and tells me someone from an agency is going to call. Well i speak to that person and she says she is going to come and do the educational part, someone will come to do the PT and then i have to drive somewhere to get the OT done… and it is far. So i said, well my baby is 10months and she said she would try. So then i ask what about SLP and she said – oh we don’t do that… and i am thinking…. what does the coordinator think… she knows he has a feeding tube and she chooses an agency who knows nothing about feeding??? I left her a nasty message.

But the good thing is i am doing a lot of work on my own and found 2 really good places, or what seem like good places that specialise in feeding. One of them around here, where the owner is a feeding specilaist and they have a really cool gym etc and it is a 5min drive… the other one, where we are going to see a physiatrist, that was part of a hospital and it is a rehab center and it is 15min away, so if they are good, we will be ditching NJ, which is at last 1.5 hours away and they are taking things too slow.

I know i owe you the scanned page but i am never going to have time to set up the scanner, which is in a box, so here it goes:

PRE MEAL SET UP

Food – preferred; texture – puree; chair and seating – highchair; reinforcement – praise and preferred toys

RULES
Matthew, you will get to play with your toys the whole meal. I am going to put some food on the spoon and say “opne”

MEAL FORMAT

1. Conduct 15min bottle/spoon feeding (FYI – i do about 25 min sometimes) presenting Matthew up to 140cc of formula and 2 ounces of puree. Begin eahc feeding with presentation of 40cc of formula. Afterwards, 4 bites (i do 5 usually) of puree using procedures below and 1 sip (i let him drink whatever he will take then) regardless of acceptance or refusal of puree

2. Identify 5 or so of Matthew’s favorite toys/objects to be used during feedings

PROCEDURES

1, Allow Matthew to access his toys througout entire meal

2. Present bite every 15 seconds, holding spoon to his mouth so that it is approx 1/2 inch from his upper lip while saying “OPEN”. Keep spoon at position for 5 seconds. If M should attempt to bat spoon, place both hands on tray for remainder of presentation (ie the 15 seconds is a prsentation)

3. If M opens his mouth and is not crying, gagging, yawning, deposit food in middle of mouth. Proide brief verbal praise. Wait until mouth is open enough for the entire spoon to be placed on his tongue. When removing the spoon, keep it parallel to the tray (this we were told is important for chewing later and for not gagging)

4. If M does not open mouth or is crying etc etc, during the 5 sec presentation, remove spoon adn continue to provide attention. Present next bite after 15 sec. Do not provide more attention if he refuses a bite

5. If Matthew swallows, provide brief verbal praise.

6. If M expels the bite, do not provide more attention

7. Do not provide any attention to M disruptive behaviors (head turning, batting the spooon, gagging, vomiting or crying during the meal)

This was long but i am not an expert and think it is important you read it as it is — as the feeding specialist said — you give these to 2 people and they each feed a different way!

[Anonymous]

Thais,

Just wanted to thank you for posting the feeding therapy ideas. I’ve been using special toys for Myles during meals and he is really enjoying meal time now. He didn’t really have a feeding aversion but he truly did not enjoy eating and I was always afraid it would turn into an aversion. Now I use four of five really cool (in his eyes) toys and he just lights up at meal time and laughs, smiles, and thoroughly enjoys himself. It’s such a relief! So, thanks again for sharing the tips.

How’s Matthew doing since his surgery?

Lori,

Do you have any ideas for increasing upper body strengh? Now that Myles is on the floor more I notice that he doesn’t have the strength in his arms that my girls did. He lifts his head way up and gets his shoulders off the ground, but he doesn’t seem to have enough strength to get to his hands and knees.

I hope reducing Hailey’s night time feedings helps increase her daytime appetite. Is she trying any finger foods again since her illness?

Thanks.

Christine

[Anonymous]

Christine

Thanks… we are going back to the clinic on the 29th so hopefully will have more tips (because it has been great for Matthew opening his mouth but we ahve not seen a volume increase, rather a decrease in solids..). He is doing great – moving around, walking, sleeping somehow, and enjoying the new house (we moved and we have a backyard and he loves playing on the driveway).

I read about Myles and tummy time… it sounds great and seems like he is doing pretty well!!

[Anonymous]

Thanks for the feeding clinic tips, Thais. I’m going to have to read through it more carefully when I get a chance. We are doing finger foods with Hailey, no more puree, as she is almost 13 months, and she really doesn’t like them anyhow. But I’m going to see what I can apply to her… maybe the praise vs. no praise. We’ve done toys since the beginning, and really it didn’t do much for her, but I think I’ll try again.

As for the pulling up, he’ll probably just get it on his own. It’s so funny because Hailey could always sense a therapy “move”- especially if a therapist was over, and she would stop or fuss, but then would try things out a lot on her own. I found that sometimes I did therapy with her, and other times I just let her experiment and that worked well for her.

Yesterday I was at the mall with Hailey and I saw this baby boy in a stroller. His mother pulled him over to the bench, and I could see that he had a PEG and she was giving him a bolus with a syringe. I started to cry. I think because I’ve never met someone face to face before who has a child with feeding problems. I just wanted to go over and hug her, but my sister had just arrived and we had to go. I kept thinking of Matthew, and Christian, and Noah, and Brian, and all the others on this board who have been through the hell of feeding aversions… my second family. But yes, you are right, Hailey is Hailey and Matthew is Matthew, and as trying as it is they will come around when they’re ready. I know for Hailey I need to get up the courage to just cut out half of her bottle feeds, but I think I need some direction on how to do it… i.e. cut out bottles, or cut out hypercaloric feeds. Also doc doesn’t want her crying at night, so it’s really a hard situation… of course she’s going to cry if I suddenly don’t feed her. But I know deep down that it’s the right thing to do.

As for the EI, don’t give up! I had to push and push to get help for Hailey. In fact, I eventually took matters into my own hands, and basically found the help, and then TOLD the right people to make the referrals. CRAZY!!! I’d also be mad if they set me up with an agency that didn’t know about feeding. Sheesh! Hopefully one of the places nearby will work out for you guys because 1.5 hours is really far to drive.

I’m glad that the move went well and that Matthew seems to be doing well with the tube, and even sleeping. That’s FABULOUS!

Christine, thanks for asking about Hailey. No, she’s not really taking anything since I posted about it. A couple of bites, but mostly throwing everything down on the floor and whining. I hope it’s teething, but I’m not convinced. Time will tell.

That’s great about Myles now enjoying eating. I always knew that Hailey’s bottle aversion was going to turn into a feeding aversion. I told every doctor we saw that if we don’t get her on a better dose of meds, then she will end up with a full blown feeding aversion. Oh well. No one listens to mommies. (sigh)

As for the upper body strength, I think it will come with time. Myles is just now, from the sounds of it, starting to do tummy time, so it will take a while until his upper body strength improves. But it will happen as he continues to experiment. I posted a while back about some things you can do to help with upper body strength and crawling. I’ll try to find it and bump it. If not, then I’ll write some more later. We’re on our way out now. It’s our wedding anniversary, and dh arranged with his parents to watch the kids for 2 hours so we can go out for dinner. We’re going to leave the kids there. It will be the first time since Hailey’s been born that we’ve been out of the house together without a baby in tow, and the first time that I’ve ever left Hailey.

Anyhow, Hailey’s up… gotta run.

[Anonymous]

Thanks Thais,

I’m happy to hear that Matthew is doing well, besides not eating much. Hopefully that will get better soon. Myles love to be outdoors, too! Right now all he can do is watch his sisters play, but he just gets so exicted watching them run around. I can’t wait to see him mobile and playing as well.

Lori,

Thanks. I thought I read somewhere some exercises you posted, but I couldn’t find them. If you could bump them I’d appreciate it; whenever you have time. Happy Anniversary. I hope your’re not too nervous to leave Hailey…try to enjoy yourself. It’s great for you and dh to have some time alone together.

Christine

[Anonymous]

Happy anniversary Lori! I hope you have a nice dinner tonight.

GREAT news about Matthew – sounds like he’s really making progress and
I’m glad he likes his new house. We miss you guys being in the hood
though.

Christine, Marisa army crawled (like a snake) for a LONG time before
finally going to hands and knees. It will come now that he’s practicing.

[Anonymous]

Thanks Karen,

I guess I compare him to my girls so I worry that he is not where they were at 9 months. But he is making progress. He is really moving all over the floor…mostly rolling around…but compared to a week ago it’s amazing progress.

Christine

[Anonymous]

I have a friend whose son only army crawled and never did it the typical way. It really doesn’t matter as long as they’re mobile. I agree Christine that it will probably come with practice.

Thanks for the anniversary wishes. We actually had a good time. Only left the kids for an hour and a half, but was nice anyhow. Hailey was fine with my mil. She apparently got upset for a bit when my mil had to leave her with my fil to help Sarah in the bathroom, but other than that sounds like it went okay. I really didn’t give her too much thought while we were out, which was nice. I was kind of upset that she didn’t eat dinner there before we left, just threw everything on the floor, but what can you do. And when we came back they were all happily sitting on the couch watching a Barney movie (that we’d brought in advance and cued up just in case).

[Anonymous]

Happy anniversary!! Glad that you could get out for a bit… it is so hard when there is little help around, isn’t it?

Karen – you should come and visit soon – it is fun

[Author]

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