Fingers are for feeding

Nov 20 2009 Leave a Comment

This week we had our appointment with Robin Glass, Will’s feeding specialist. We haven’t seen her since early October, so I was interested to get her perspective on how Will was doing with his solids. He is very interested in food, just not really into using the spoon. He will pick up anything that I put on his tray and taste it. Some stays in and some comes out, but he is very enthusiastic about it. With the spoon, he will open his mouth a few times, but not really close around it to remove the food. He does much better when I put food on my finger and put it in his mouth.

Robin confirmed that it is not uncommon (double negative, sorry) for some babies to decide that finger foods are more to their liking and loose the spoon early. Will does much better with foods that are thicker, (not the thin baby food purees) keeping the food in his mouth and moving it around to chew it. We actually tried turning the spoon over and putting it in his mouth and using the handle, which he did much better. I guess he just has to do it his way.

Overall, she was very happy with his progress. We still need to work on his chewing technique and his pincher pick-up, but those will come. He is so enthusiastic and willing to try most anything, his skills just don’t match his will yet. I am going to give him fork-mashed or lightly ground foods, instead of purees and soft finger foods to pick up. Everything will be easy for him to “chew” and get to the size he can swallow.

It is fun to watch him eat. He is a full contact eater, enjoying food every possible way, in his mouth, up his nose, in his hair and ears. He will even work to recycle some off his bib if he runs out of stuff on his tray. I am going to try to find some things for Thanksgiving that he can have, maybe some mashed potatoes without dairy and some pumpkin (without the pie).

At the end Robin said that we don’t need to come back to see her unless we have a question. Great! She is such a wonderful person, it will be sad not to see her, but exciting to get good news from doctors over there.

P.S. I have a freezer full of organic baby food purees, if anyone wants them, please let me know.

Filed Under: GI, William Tagged With: , , ,

Acknowledging the fear

Sep 17 2009 1 Comment

Yesterday I met with Robin Glass our feeding therapist to work with Will on solid feeding. (Side note – he is taking a bit longer to get the hang of it, so we are seeing her for pointers. More in that in another post.) After Will finished his solids session, she sat and watched me feed him his bottle and we chatted. This week has been a difficult one for us, because Will has been cranky, uncomfortable and not wanting to eat very well; Monday being the hardest day.

As I told her about the week she said “it is good that you aren’t letting the fear run away with you. You are acknowledging that you have the fear, which is good, but managing it within the current situation.” I responded by saying that I was trying to do that, because for us the fear of what happened with Jack’s eating is always there. There isn’t anyway it can’t be with all we went through to get him where he is today. I work really hard not to overreact to subtle ups and downs with Will’s eating, since that is normal baby stuff (normal baby stuff?!, we actually get something “normal” for a change.)

I told her that everything that went on 6 weeks ago, his eating dipping down and then recovering after we made some changes to his routine (thickening his formula and more on demand feeding) has helped me realize that he is a different child and I can start to put the fear in the back of my mind. It all came racing forward in early August, but we figured it out and him out and got the ship righted again. Jack never recovered, for him once the downhill slide started it never came back.

The last thing she said to me was Will doesn’t refuse food, he just lets us know when he is done. Will is engaged in the bottle and feeding until he gets full/done and then lets us know. Jack wouldn’t engage, he would eat just enough to get rid of whatever hunger pain he had and then scream to stop. For him he never relaxed into the process which Will does do.

It is so helpful to have her around, even if our visits are more for me than Will. In some way Will’s doctors have become our therapists as well (especially our pediatrician.) I don’t know where we would be without them. Thank you Robin for letting me know it is OK to acknowledge the fear so it will not run away with me.

Filed Under: eating, GI, Jackson, William Tagged With: , ,

Swallow Study

Sep 09 2009 Leave a Comment

Yesterday was William’s swallow study. This was the last of the tests GI suggested we do with him. During the swallow study he sat in a seat that looked similar to a car seat next to a fluoroscope (like the one used during the upper GI). We fed him bottles of barium and then watched how he swallowed the liquid. For him we tried thin (normal formula consistency) and thickened (slightly thicker than we use) liquid. They were looking to make sure that he doesn’t aspirate (let the liquid go into his lungs) when he swallows. We switched back and forth with the two thicknesses during the test.

We found that he was almost aspirating the thin liquid (normal formula consistency). He was letting it go into his windpipe and only his vocal cords were closing down and pushing it out. Not good. With the thickened liquid he did much better. He was able to control is swallow and move it down his esophagus smoothly, not letting it in his wind pipe. He needs to be on the thickened formula for at least the next several months; then we will retest him and see if he has gotten better.

Even though this isn’t the original reason that we put him on the thickened formula (reflux was), it is good that he is on it and likes it. It also explains why I have noticed that he eats smoother and faster. It is easier for him to control and move through his swallow mechanism. I am not sure what it means for him learning to eat solids. That is a question for our feeding specialist, Robin Glass.

The most interesting thing to me was that this was the test that I thought the least about and figured wasn’t going to show much. I even thought about canceling it. (I also thought that about his eye appointment.) I guess I need to stop thinking that.

Filed Under: GI, William Tagged With: , ,

Two busy days

Aug 19 2009 Leave a Comment

Yesterday morning we left our house for Seattle Children’s Hospital and returned home this afternoon after an endoscopy, pH probe, upper GI and appointment with a feeding specialist. It was a busy two days and we are all very tired. Needless to say you don’t get much sleep when you are in a hospital, but add on to that sharing a room with a family who has an infant and there is even less. Yes, they double up infants. It doesn’t make sense to me either, but that is how it works. Will was able to sleep through the night with everything going on: another baby in the room, nurses in and out checking his vitals every four hours and our roommate’s TV on all night. He is a little super star.

He started off with an endoscopy yesterday morning at 8:45. For this procedure they put him to sleep and then stick a camera down his throat to look at his esophagus, stomach and upper small intestines. They also take tissue samples in all the areas to make sure there isn’t anything going on that they can’t assess visually. The doctor came out with photos (Jim joked that we should frame Jack’s and Will’s next to each other and play pick out your stomach) and said that everything looked normal. He didn’t see any signs of irritation or concern. The tissue sample results will be back in 1-2 weeks.

While they were finishing up the endoscopy they place the pH probe for the 24 hour observation period. It is a probe on the end of a thin tube that sits in his esophagus and measures the pH. If there is any acid left in Will’s tummy when he refluxes or spits up it will register a lower pH. I kept notes on when I he eats, sleeps, spits up, or has any signs of distress. We had to stay at the hospital overnight while it was in, just in case he pulls it out then they can put it right back in.

This morning we did the upper GI, which looks at the anatomy of his esophagus, stomach and upper small intestine. They feed him a bottle barium solution (flavored with cherry syrup) and watch on a fluoroscope as it flows down to his stomach. Pictures are taken every so often, as he is moved into different positions (left side, stomach, right side). He didn’t really like this one very much. All of his anatomy looked normal, so that is good.

The last thing we did today was meet with our feeding specialist. We chatted for a bit and she watched Will feed. She suggested we start using Simply Thick to thicken his formula instead of rice cereal, because the cereal has been clogging the nipples. So far it seems to be working better. She also advised to let him tell us when he is finished feeding and for right now not to start solids. We will check in with her next week to see if we should come back over again.

Overall Will handled all that we have put him through like a champ. Even with all of this stuff he ate a bit better the last few days. The thickening formula seems to be helping, so fingers crossed it will keep getting better.

You may be wondering what Jack was doing during all this. Well we lucked out and had two wonderful people to stay with him, thanks guys. Yesterday my aunt Amy watched him in the morning. Jack got to go wake Riley up and show Amy what a good swimmer he is. Jim came home about lunch time and then they both came over to have dinner with Will and I at the hospital last night. Today Jack’s godfather Alan came over to play. They watched movie and played Hit and Run, one of Jack’s favorite backyard games.

Filed Under: GI, William Tagged With: , , , ,

Doctors, procedures and appointments, Oh My!

Aug 12 2009 Leave a Comment

It has been a busy day so far. This morning we had our appointment with GI at Children’s Hospital and I would say it was productive. While he didn’t provide answers to all of our questions he did agree that scheduling some procedures to rule things out was a good idea. So here is William’s schedule for the next few weeks.

8/14 – Appointment with a 2nd GI doctor for a 2nd opinion (with the consent of our GI doc).

8/17 – Endoscopy at Children’s Hospital – yes he has to be put to sleep for this one, but we don’t have to stay overnight. They will stick a camera down his throat and see what they can in his esophagus, stomach and upper small intestines. They will take biopsies of tissue in all locations to make sure there isn’t anything going on.

8/18 – am – Upper GI study – William will have to drink the Barium bottle and then they watch the flow of the liquid down his esophagus and into his stomach and small intestines.
pm – 1st appointment with the Occupational Therapy (OTPT) feeding specialist at Children’s Hospital.

8/20 – Appointment with an eye doctor to make sure his eye movements are normal.

9/3 – Follow-up appointment with 1st GI doctor.

9/8 – Swallow study – to make sure Will is not aspirating his food as he eats.

Oh yah and Jack has a dentist appointment on Friday too.

All of this stuff may end up being overkill, but we just want to be thorough in ruling things out or finding something. With Jack we felt like we fiddled around and waited to long to do some of these things and it may have made a difference in his outcome. If Will ends up with a feeding tube after everything we just want to make sure that we tried all we could and in a timely fashion to try to head it off.

To give you an idea when we did stuff with Jack he had an Upper GI at 2.5 weeks old (that is how we discovered his reflux, because both boys are pretty much silent refluxers – meaning they don’t spit up a ton), a Swallow Study at 4 months old (3 months into feeding issues) and an Endoscopy at 6 months (he already had a feeding tube by this point).

All of these results may prove to be normal, but at least we will have ruled out that there is anything going on in his stomach and throat. Jack will get lots of use out of the new portable DVD player we got. I wonder what the favorite movie will be.

Filed Under: GI, William Tagged With: , , , , , ,