Lori…

[Anonymous]

Don’t know if this is going to be easy but given that our OT appointment is still 3 weeks away and it will probably be delayed – we have an appointment with the GI on the 26th and i think shortly after that we will go for the gtube surgery – is it possible for you to suggest some exercises for Matthew?? Again don’t have a clue if these vary from baby to baby depending on what they are doing etc – i am sure they do – but is there anything general we may be able to do in the meantime?

I responded to your post re 2 OT – we will get evaluated and take it from there… i have a friend with an 18month old girl who is receiving therapy 3 times a week!! And so maybe the EI guys will suggest more than once a week 🙂 and then i can choose

[Anonymous]

Thais, what is Matthew able to do now on his stomach? Can he tolerate any tummy time? What about in kneeling when you put him on his knees? Does he do any transitions yet, like rolling over, going from tummy to sitting, sitting to standing etc?

I’ll respond to your post later… sorry have to go put Sarah in the bath.

Re the two therapists, you can’t really do it here, it’s referred to as “double dipping”, but you have a private system so it may be different. The OTs might not mind if you are open about it. Otherwise you can just get assessed by both, see what they both recommend and take it from there- see which you like better.

[Anonymous]

Thank you… also going to give Matthew his bath (hoping he does not get his tape on his face wet because i swear i am not putting the tube back in until we get the Gtube).

Will answer your questions in a little bit… thanks!

[Anonymous]

OK – appreciate your help. He hates tummy time… don’t know how we are going to get him to do any exercises on his tummy. When we put him on his tummy, he just rolls to his back. He does not go from belly to sitting; he does kind of go from sitting to standing but still with some help ( he will pull when the OT gave her hands or one hadn and the other one somewhere but he will not do it on his own); he does not kneel (the OT tried this too…).

We are going to see the ped tomorrow adn will discuss this… although last time eh said that he was not concerned because he tried to walk with matthew and he was doing great… but i guess different people ahve different views!

[Anonymous]

Thais, Matthew sounds a lot like Hailey. What did the OT that assessed him say about his muscle tone? I am assuming that Matthew’s not crawling because of a lack of exposure to tummy time (because refluxers are notorious for hating tummy time!) and not due to low muscle tone or anything like that.

You’re right- in order to give the right treatment, Matthew will have to be assessed properly and given a program based on the assessment findings. Hopefully the OT at the feeding clinic will be able to help you with this. Also, I just wanted to preface that I don’t work in pediatrics, nor am I practising or registered right now (on Maternity leave), so I can’t offer any help as an OT. But I can still give you some general suggestions as a friend that might help and tell you some things that we did with Hailey.

The most important thing is really for him to get exposure to more tummy time. Hailey also used to roll off her tummy, but she could only roll one way, so I would put a pillow on that side to block her. I would put a toy out in front of her and I would go down on my stomach and face her to keep her interest. Some babies tolerate tummy time better on a wedge (incline) of some kind. Not sure if you have this available- if not, maybe your OT can supply you with one. We also did tummy time with a bollster under the arms so it’s less work for them that way.

Here’s one way to get them on their tummy that Hailey really liked:

Sit on the floor with your legs spread into a V-position. Put a toy in between your legs. Drape him over one leg so that your leg is basically under his arms. This will help him to stay on his tummy, but also encourages pushing up on all fours.

To get him on all fours-

a. From sitting, put toys just out of his reach so that he can’t grab them easily. Make it so that he has to lean forward and weight bear through his hand to grab the toy. This will facilitate him in getting on his hands and knees and getting used to taking weight in that position.

b. In kneeling, put a stepstool on the floor in front of him with a toy on it. Put him on his knees and encourage playing with the toy. Move the toy far enough away so that he has to lean through this arms/forearms to reach it. Also, lie on your back and spread your legs into a V and put him between your legs/groin on his knees with his tummy/hands on your torso. You can pick up your head to play peek-a-boo with him. This should help him to also push up through his hands and get used to weight bearing like this.

c. From tummy, use suggestions above for tummy time. Also when on tummy you can hold his legs and support his torso to see if he can support the rest of his weight off the ground. Try tummy time on different surfaces to see which he prefers. Generally a firm surface is best for any type of exercise. Also, when on his tummy you can dangle a toy that makes noise above his head and see is he tries to push through his hands to look at it.

Facilitating transitions (i.e. lie->sit, knee->stand, sit->stand)-

Sometimes teaching transitions can also help to develop muscle groups that will facilitate moving in general.

lie->sit when on his back- Whenever he’s on his back and you’re going to pick him up, let him do part of the work (like when picking him up from a diaper change etc). Roll him slightly on to his side, and bring him up partway, but have him push through his hand to get himself up the rest of the way.

sit->stand, or kneel->stand- put him in front of an ottoman or a sofa and put a toy on top. Show him the toy then put him down on the floor in either a sitting or a kneeling position. If you start in sitting, you will have to bend one leg and help him to push up through that leg by giving him some support and pressure through the pelvis and trunk. If you start in kneeling, then put your hands on either side of the pelvis and then give a bit of pushing to raise him up. Gage how much help he needs so that you are starting the motion and he is following through. Then you can let him play a bit in standing and then drop the toy to the ground and see if he wants to go down to the floor on all fours to get it.

twisting- sitting on the floor with your legs in a V-position, put him with his back towards you and see if he’ll twist/rotate his trunk to look at you (call his name or sing to get his attention). You can also put a toy out to the side of one leg and see if he’ll bend over the leg and take weight through his hand to play with the toy.

Not sure if any of this makes sense or even if any of this will help. The truth is that he’s only 9 months old, so really I think that a lot of it will come with exposure. These are just some ideas you can try to see if it will help him to realize that he can move into these positions, and they may help to strengthen some muscles needed for crawling. I might call the OT who just assessed him and see if she can recommend any exercises/games/activities for home until the next appointment. If she does, see if she can demonstrate or give pictures to help clarify. I think the reason that the therapist and the pediatrician disagree is because they’re both right and they’re both looking at it from different views. The ped is not concerned because Matthew must look strong and because crawling is not really considered a crucial milestrone anymore- some kids don’t ever crawl. But, crawling does help to strengthen certain muscle groups that might be beneficial for babies who have feeding problems. Getting those muscles stronger will presumably only help with feeding. I think that’s the train of thought. So I wouldn’t worry about it too much. I’m just giving the ideas because you asked- not because there’s a problem.

I might put this message out there for anyone else who has been going through therapy for gross motor/crawling. Perhaps they can share some ideas that their therapists gave to them, though to get the best ideas for Matthew, he really needs to be assessed.

Let me know if something’s not clear. Good luck. I just wanted to add that I noticed that he is going to get his tube? When is the procedure scheduled for? How did you guys decide to finally switch. Also, I’m not sure how this will impact his ability to be on his stomach.

s&h’s mum2006-5-19 7:48:35

[Anonymous]

Thank you Lori… i read this once and some of it makes sense… the rest i will just re-read or wait until i am a little bit more awake :-). I really appreciate your help. Some of these make a lot of sense. You are right, it was not low muscle tone but she said in her evaluation:

“prefers walking with support; avoids all prone positioning (seems extreme stomach discomfort); minimal oblique activation; weak obliques and weak shoulder girdles; rib cage not fully descended”

She said that all this was due to lack of exposure vs lack of muscle tone in itself if that makes sense!

I will do the pillow tricks and see if he lasts on the floor I guess he will have to someday!

On his tube – our thoughts are, he is not getting this tube out any time soon. We are looking at a year at least of tube feedings, i know (have you read Darshani’s (Americanchai) story? Sounds a lot like Matthew and she has been weaning Nitara for a year and she has done great so i think that is our best estimate and probably most optimistic). If that is the case, it is getting more and more difficult to put the tube into Matthew by myself – he is a little bit over 19pounds now and really strong and it takes at least 5 minutes to put it in and secure it. Then once you have it in, it comes out because he pulls it, he rolls and the tape gets stuck adn he sneezes or coughs and it comes out a bit and he starts choking. He gags on it lately, i do not know why. The minute i start feeding him through the tube, he starts gagging. Even if there is no formula in his tummy. (this is also a new tube and it is much harder, so i guess it just hardens when liquid goes through and he notices it??) He does this even when sleeping. And summer is coming and i want to go swimming with him. He loves the water but if his face gets wet, then the tape comes of and we have to replace it (let me tell you, that is as big an ordeal as putting the tube into him); everytime we put him down, he manages to pull his tube….

Sorry all those are really some of the bad things about the NG tube. With the Gtube, the stress of the tube comes out; we will be able to let him be on his own for longer; after a few days, he will be able to go in the bath and we will be able to wash his hair well which he loves; and we will be able to figure out a bit better if part of his throwing up is due to the gag reflex (sometimes i think they just become aware of something and his tube was not bothering him before but it is now); it will be done by endo, so the GI is going to take a look at his esophagus and we are going to request a biopsy because last time he was on neocate. AND i am going to be able to sleep at night… right now, sometimes he pulls his tube and it stays half way through his esophagus or throat and he chokes and chokes and i have to run to get it out. That means i don’t sleep at all. And that means i am so much more irritable during the day.

We have an appointment on the 26th to decide dates, and for the GI to tell us whether she will put in a tube or a button and what type and how long between the tube and the button. We spoke the other day and she said she will be ready for that discussion. So i assume it would be 2 weeks or so after that? She is on holiday now, which is why it is being delayed.

Problem is we are moving around that time! But my mom is going to come to help out if he gets the surgery and maybe if we spend 3 days at the hospital, my mom and husband will do the move and that way it may be easier for Matthew!

Thanks for your advice… appreciate it

[Anonymous]

Thais,

It sounds like you have come to a final decision about the g-tube. I didnt realize Matthew was having so many issues with his NG tube. Poor little guy! I think if I were in your shoes, I would do the same. Even though I’m sure its a big step for you and Matthew, and it will take some getting used to, in the long run it seems as though it will make life easier for the both of you.

Please keep us posted!

[Anonymous]

Thanks Lisa – it has been hard and it is a tough decision. You know, at the feeding clinic they said that they were happy with the NG and they would be just as happy with the Gtube; the GI wants teh Gtube and our old ped wanted to NG tube….!!!

The NG has started creating a lot of stress… and i really want to make sure that it is not altering his gag reflex. he is also a sensitive baby who after 2 min of crying will throw up though… so who knows.

It is going to be tough and he will have a scar and we will hae to be good about cleaning it etc and it FREAKS me out. But i think he is going to be OK. I had major surgery done to remove a tumor from a salivary gland years ago and it was tough recovering. So i am a little bit scared, en though i know this is minor. I know in my heart we have to go through this and we have made a decision!!

Will keep you all updated. We are going to see ped today… see what he says but i think he will defer to the GI for the decision.

How is Noah? I have responded to all your posts. People are just dumd and they really really have no clue about refusing to eat. Seriously…. i won’t go into it again because i get so mad about the whole issue. I wish that some of those people could get Matthew for just a feeding… just one!! I am so happy about the feeding center. After 3 minutes, they said there is a problem and a serious one. Do you have any other feeding centers around?? I mean, Matthew has all the appropriate feeding skills… but yet they recognize that his behaviour during eatng is really off… maybe someone else can evaluate Noah?

[Anonymous]

Just reading this now Thais and glad to hear you’ve made a decision and
seem to be a peace with it. I hope it helps make things a little easier
for both you and Matthew and hope the feeding therapy goes well for him
also.

Will Matthew tolerate tummy time if he’s laying on you? Will he push up
a bit if he’s laying on you (belly to belly) to see your face?

[Anonymous]

Thanks Karen. we have but it seems like our ped is not so happy about our decision?! I mean he was telling us to hold off on the tube but we need to see sockolow on the 26th (good thing is they have a great system and she recorded our phone converstaion the other day so he was up to speed!).

On good note, ped said that Matthew looks awesome. He was up and babbling and walking around and he said he looks just great and has put on weight and was very happy. He said that 1/2 of his patients don’t crawl and they will develop the muscles later. But he said that if therapy is going to help his digestive system, he is all up for it! We talked about the feeding program and he agreed matthew is too young to be left for so long by himself.

ON BAD NOTE – we have been sent to the cardiologist this time. I had mentioned to him that i am a little bit worried that Matthew sweats like crazy and that he sweats in his sleep… so he listened to his heart and he says that he hears a little murmur maybe or some valve maybe not closing?? He said that if i had not mentioned the sweating it would be nothing and it is hopefully nothing but he wants us to go..

THE NEVER ENDING STORY. I am just glad that this guy is so proactive though. He worried about kidney and we got the appointment within a week and now he is setting up the cardiologist visit soon… I am jsut hoping that Matthew is fine!!! LIke we do not have enough with teh daily lack of sleep, throwing up, no eating and tube feedings to now worry about this appointment

[Anonymous]

You mean your new Ped here? Why is he opposed to this?

Great news with the babbling and walking and weight gain!

I’m sorry to hear with the possible heart murmur. Definitely keep us
posted – when are you going to the cardiologist? Hang in there – we’re
thinking of you guys.

[Anonymous]

Thais,

Hailey also sweats like CRAZY!!! She is always sweating and in her sleep her sheets are always wet. Sometimes her hair is so wet it’s crazy. I was going to mention it next week…our doc is also very proactive, so I hate to have to add a cardiology appointment to our neverending list! (sigh). If it makes you feel any better, my older daughter had a slightly fast heart rate and our doc wanted to be proactive so her sent her to the cardiologist who by chance happened to find a TINY hole in her heart (called a ventricular septal defect). Anyhow, I was freaking out but they said it’s really common and will close at a year likely, which it did.

Why doesn’t the ped like the idea of the g-tube? Also, I don’t know if this makes you feel any better either, but I work on a unit with cancer patients, and a lot of them need temporary feeding tubes. Anyhow, my friend’s father was in this situation. The point is that sometimes we’re so scared of something with our babies because they can’t tell us if it will hurt, or what it feels like. But I talked with my friend’s and he said that the recovery from the procedure didn’t hurt much at all, and that the feeding tube itself was painless. I was asking because it was a time when I was concerned about the issue of pain for Hailey, and it gave me some comfort to hear that from an adult. I hope that whatever ends of happening, that it makes life easier and more pleasant for both you and Matthew. He seems like such a sweet beautiful baby and you both deserve a break. Please keep us posted.

[Anonymous]

Thais, I also wanted to add that Hailey smells bad… like dirty, sour smelling (like after a workout). Does Matthew smell like that too? I’ve always wondered about it, but when hailey is freaking out at the docs, sometimes we have to cut things short and I forget to ask everything.

[Anonymous]

Thanks Lori. It is just that we have never-ending appointments it seems! I never imagined that my life was going to be like this… i am still getting over it today.

I am hoping that the cardiologist will find nothing. I know that our ped in Spain is supposed to be really good at everything and he saw Matthew once a week for 3 or 4 months and he never said anything about heart rate.. so i am hoping our new ped, who is really good but young just heard something minor and because of the sweat and his feeding issues he just wants to check it out.

Does Hailey sweat also while eating? He said the sleeping and sweating was more common but sometimes when they sweat a lot when they are eating they do check the heart… i don’t know about sour but Matthew’s sweat is really salty (i guess everybod’s is). The second he starts eating he starts sweating all over, even his hands. Does that happen to Hailey too? You may just want to ask about it.

The ped did a bloodtest too to check for anemia or lead or other deficiencies… and guess what – he fussed when the needle went in but that is it. 2 seonds. they drew around 9ml of blood and he did not care… i am just hoping that the GTube procedure is as easy… ie he behaves amazingly well during all the procedures, even the ones that are supposed to hurt!!

Thanks on the Gtube. I have heard that babies are up crawling hte day after the procedure, and they are back to sleeping on their tummies (Matthew is a back sleeper anyway right now), so i was hoping it was not that bad. He said that for him, it was easier to wait until kids are older to get the tube but obviously lots of preemies get them… i don’t know he kind of was hoping we would wait until the end of the summer and see how things go adn yes, when next fall comes around with the colds etc and he is not better, then go for it. But he also said that if Matthew is pulling it and making our lives difficult and his as well then he would support us, but to talk everything in detail with teh GI.

[Anonymous]

Thais – who is your new Ped with and where is he located?

Interesting with the sweating. Like Hailey, Marisa always sweats while
sleeping – but not while eating. She did have to go to a cardiologist
at 3 weeks old though to check on a heart murmur – full ultrasound and
all (at height of undiagnosed reflux) but turned out to be an innocent
(spelling?) murmur and must have since closed. I hope Matthew’s turns
out to be nothing of consequence too.

[Author]

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