All switched to day feeding

We been working on Gerald's  feeding schedule for the past 3 weeks now. I am proud to say that we are successfully switched him from a night drip to day feeding now.  He needs 1200cc calories per day of pediasure,but we add 500 cc of water to make up the difference to upto 1700cc per day. He gets so dry during the summer if he doesn't get enough fluids. Anyways, we have no throwing -up episode at all on his day feedings and no problem at all. He is now in the normal feeding schedule like the rest of us. It nice to switched because we do not have to wake up early in the morning to turn-off the beeping feeding pump or to clean up the floor because of the feeding bag broke, none of that now. His last feeding is at 8pm and that's it! This way we can completely potty train him during the night.

We still have working on the oral feeding though. We have come to the point that he can taste every food that we ate now. I just need to teach him how to chew and swallow solid food. At this time a feeding therapist comes in handy if we have one. I hope the services that he is on provide an hour feeding session per week, but they don't! I even offered to the his case manager that I would give up two of his services in replace for a feeding therapist because that is what he really need at this time. Still, they won't do that! What a big frustration!

Feeding Issues Again!

Greetings!

A couple weeks ago, I got an idea of how to wean Gerald jay off from the night drip. We normally feed him the whole night for about 80 cc an hour until 5 o'clock in the morning and then 6 am we give his medications.

We did this night feeding ever since, since he has severe acid reflex. But lately I notice that he hasn't been throwing up for quite sometimes, and he can drink his milk from a cup or a bottle ( thickened) about 7 to 8 ounces at a time. He's been doing that for quite sometimes also. So, I think his stomach been stretch enough to handle the big amount of milk.

So, I decided that to chance his feeding time. He needs 1700ml of fluid a day and 1200 Kcal. Everyday I prepared his milk in a big bottle that worth a whole day feeding and give him the rest of the milk that he didn't finish during the night through the feeding pump for couple hours.

We were successful for a week at this without feeding him the whole night. So I said, " great, I think we are heading to a good feeding schedule now". 

I think, I spoke too soon! Few days ago, my son showing less interest of drinking his milk from a cap. We ended up feeding him through the tube all the time and more and more milk left over for a night drip.

How can we move on from night feeding to totally day feeding?

It is getting a little frustrating sometimes!

Feeding Issues Once Again

Sighhhhh I thought I completely transitioning Gerald to a day feeding, but I guess not! He did really well for almost three weeks without puking at all. I was really proud of him and bragging about it with his GI doctor that he was doing real well and no more puking. The doctor went up one knotch of his calorie intake from 1100 kcal/day to 1400/kcal/day which gives us upto six bottles of pediasure. He did well for one day of no puking and for the rest of the week and until now he puke and puke and puke every time I gave him his feeds. My husband and I were talking about blended food, but I said that it is not appropriate for us because I couldn't keep up my kitchen regularly. Once I get done everything I need for school and be focus on hose cleaning and other stuff I might considered the blended food. Plus, he has diarrhea everyday. For  more than 2 years he had the constipation, now he have diarrhea. Is anyone know how to treat diahhea naturally? I gave him pedialyte just to balance his electrolytes since he is puking and diarrhea at the same time. Poor GJ :(

Night feeding will be over soon!

Pretty soon the night feeding will be over.

We were successfully transitioning GJ's over night feeding to day feeding. We were feeding him more during the night to avoid the throwing up episode and it doesn't make any sense if we feed him and then he will just puke them all.

Now, he was taking more liquid during the day and if he doesn't drink it I gravity feed him. I think we are more successful of this transitioning thing because he is cooperating with us.

I am very proud of him. Great job GJ!

He is taking only 1400 fluid per day!

It was just a suggestion.

Gerald jay had to go to the speech therapist again today. This time, I am the one who took GJ to the clinic. I just want to make sure if the feeding therapist really given up on him. Anyway, according to my husband he felt that the therapist was giving up on him, but today as I spoke to her it wasn't sound giving up to me. She also mentioned to me that she was looking for a pediatrician that deals with behavioral problem if we want GJ to get help. (Gerald gets what he wants and he screams and ignores us when redirected.) So, It was just a suggestion for us if we want GJ to be more calm during the therapy session. I want to do it. I explained to my husband that he interpreted it wrong when the therapist told her that GJ needs a behavioral speech therapy.

Anyway, today he did fair during feeding session. GJ allows the therapist to touch his cheek with the spoon. But he screams again after the second attempt. We will work with on staying on the chair for 15 minutes and not crying.

Frustrated and disappointed

Today, Gerald jay had an appointment with the feeding therapist at the CRS clinic. He goes there every Wednesday around 9:90 am. I usually stayed home with my little daughter,and my husband normally takes him to CRS clinic. Anyway, today was his third session and my husband thinks that the therapist is given up on Gerald jay. It really is frustrating because GJ can not stay on the high chair even 15minutes. He always walks around the room and if you tell him to sit down he gets angry and lied on the floor. Today, they restrained him so that he can not wonder around. However, he was not very cooperative in the feeding; therefore, the feeding therapist suggested to take him to the feeding specialist that deals with behavior too. It was very disappointing. I wish we could get out of this problem. We are planning to place a G-tube on GJ's stomach and I couldn't wait for that. It came to the point that the NG-tube is not very efficient now. He normally cough it out and to put it back in is not fun, because Gerald jay was screaming and kicking at the same time.

Another, after the feeding session he had an appointment with the neurologist for follow-up check for his stroke that occurred during the aortic reconstruction last July 5th of 2007. He doc said that the damage of the stroke is more than we thought because the way his should is formed. There is nothing they can do so far but therapy. I noticed his should last weekend when I took off his clothes at the zoo. It seems his shoulder was leaning forward and I can see the slight dislocation of his joint in his shoulder. He had his therapist available for him, so I am hoping that it will resolved as the day goes by.

Feeding Tube Issue

Gerald woke up this morning and his feeding tube was not in placed. So, I literally took it off see if he can manage to drink milk in a straw through out the day. Fortunately, he did well drinking fluids through a straw. Then later tonight, he refused to drink milk. His father cleaned up his tube and showed it to him or more accurate to say is that Ralph gave Garald choices . If he want the tube placed in or drink milk. For the first attempt it works. He picked the milk rather than the feeding tube. When the time came to put Gerald in bed, I told Ralph to feed him before bed so that he wont be hungry later and my plans was to wake him up tomorrow morning to give meds and feed him again, but he refused to drink. Therefore, he got the tube back in his nose. It was not a big deal to put the tube back in his nose, but the uncomfortable sensation when it pass through his throat was his complain. He cried a little bit but that was about it. He did well the whole day anyway. Big improvement every day. Thanks to the Almighty Father in heaven.