Well we thought Brie was doing better with taking her bottles awake, but we are back to refusing. She will allow you to put the bottle in her mouth and will act like she is sucking, but she gets nothing out of the bottle. After about 10 minutes of nothing she gets frustrated and starts screaming and you have to get her to sleep to take the bottle. Hopefully she will start sucking again on the bottle. We have not been very good about her therapy because of the holiday and so many visitors so mommy and daddy are hopeful that once we get back on track with the therapy she will start taking bottles awake again. She has been taking more on a daily basis and is finally gaining some weight. Last night she was 15 lbs 5.5 oz. She is still not doing well on solids either. She does like things that are crunchy like Cheerios and puffs, but there are only so many of those she will take in a sitting.

As far as physical development, Brie is doing wonderful. She "inches" across the floor on her tummy and rolls where ever she wants to go. She is pulling up to stand on everything and is cruising. Standing and walking are her favorite thing right now. She was a little spoiled over the holiday and thinks that she needs constant entertainment, but hopefully that will be short lived.

Brie had a great Christmas. She received visits from Grammie and Poppop Smithgall the day after Christmas and on Christmas Nanna and Pop Green along with Great Nanna and Poppop Miller and Aunt Kristy. She had a great time visiting.

Best Christmas present ever

Well something has changed over the past few days since we went to see Nancy. Brie has started taking her bottles awake! She at times does not take the entire bottle awake, but when she is hungry she lets us know. Additionally she has been taking 5 oz at a time. Previously we were lucky to get 4 oz into her at a time. We are now consistently getting her to take 20
+ oz a day. Hopefully she will start to gain weight. She is even waking up at night wanting to eat. Mommy does not even mind getting up at 3 am to make a bottle when Brie sucks the entire thing down in 10 minutes and goes right back to sleep!

For Christmas we are spending the day at home. We visited with Mommy's family on Saturday and Brie had a good time playing with her cousins. The picture above is Brie held by Cali and Brandon, who is the same age as Brie (adjusted), held by Christian. Yesterday Aunt Shelley came to visit and spent the night. Brie had a great time opening presents and loves her new clothes and toys.

feeding therapy

Today we went to a speech therapist in NJ that specializes in children with feeding difficulties. Nancy spent 2 hours working with Brie to evaluate and figure out new ways to feed her. She feels that a lot of her problems have to do with her suck. She basically does not suck on her bottle. We are going to work on some techniques at home to get her to develop a good sucking pattern so that she can effectively drink her bottle. We are also going to start working on more finger foods because Brie seems to really enjoy chewing on finger foods. Also Nancy suggested that Brie may not like baby foods. They do not have much taste to them and she seems to like things with alot of flavor. Today she ate cheese curls, pretzels, nutrigran bar, rice crispies and some other finger foods. She sat in the high chair for almost an hour letting me put them in her mouth. She also did some drinking from a straw and a cup. We are going to work on these items for the next two weeks. The pretzels and cheese curls are good because Brie actually sucks on them. Hopefully this will train her to suck better. We will see Nancy in another 2 weeks to evaluate her progress. Nancy also has another mother who she is going to contact that has a child with the same problem. Hopefully we can help each other through this rough time and get our little ones eating better. Over all it was a good visit.
Brie has actually been drinking her bottles better the last few days. She has taken on average 23 oz per day for the last 5 days. Today was not a good day for bottles, but she did eat alot of table foods in therapy and missed an entire bottle because of it. Hopefully she will start gaining weight again soon. She is so active that she burns so many calories. I am going to see if Nancy can suggest a pediatric nutritionist to help me with high nutrient foods and to see just how many calories Brie should be getting a day.

Just a quick pic with santa. Of course Brie would not smile, but at least she did not cry.

First tooth

After many days of chewing on everything and lots of drooling, Brie's first tooth broke through yesterday. She has been pretty pleasant through the entire thing and I did not even expect to find anything in there. It seems like she has been teething forever, but she never really complains about her teeth.

Maybe it was a combination of her teething and her cold that made her eat poorly the past week. She has been eating better the last 2 days. Yesterday she took 25 oz, which is great for her. We have increased the calories to 22 per oz, but I am hesitant to go any higher. Looking back at our feeding diary when we went to the 24 cal on the nutramigen that is when the vomiting began again. So far she has not vomited the Elecare. I may call the nutritionist on Monday to see if there is anything else we can add to the formula to make it more calories that is not so rough on her little tummy. We also started adding probiotics to her bottle to see if it helps.

She has also been doing a little better on her solids. Today she had some squash for breakfast and some chicken noodle dinner for supper. She loves to chew on baby toast and puffs. I found some baby dried apples and she loves them. Yesterday she actually took a portion of 3 of her bottles awake. A real accomplishment. Today she took a few sucks awake and then was done. I have been letting her play with her bottle for as long as she wants before every feeding to get her used to it again. Also we have been giving her a pacifier to suck on during the day. She mostly plays with it, but occasionally she will suck on it. Next week we go to the feeding center in NJ. I spoke to the therapist on the phone a few times and she really seems to know what she is doing. She is the first one who has actually been willing to help and not to dismiss us. Both feeding clinics we went to were of no help. St. Josephs kept throwing different medications at us and chop just told us that there must be something medically wrong and we need to find it. This therapist we are seeing on Wednesday wanted to make sure there was nothing medically wrong before we see her and now that Brie has had her endoscopy she is willing to start therapy. I think that the reason she does not eat is that in the beginning she was in pain from the reflux and we were to persistent with her and forced her to eat. That made for a negative experience. Then when we got the reflux under control she was still uncomfortable because of the milk and continued to refuse. Now that she is comfortable it has been so long since she had to eat awake she does not know how. Hopefully with some help from feeding therapy we can get our little peanut eating better again and get her growing. Incidentally her weight yesterday was 15 lbs 1.5 oz so she is back up the where she was before she got sick.

Early intervention evaluation

Gabrielle had her evaluation today and the speech therapist thinks she has a problem with her suck and swallow. They think she does not use her tongue, but just her jaw. She seems to not have feeling on the back of her tongue and so she does not know when food is there and it causes her to choke. The therapist does not think it is behavioral, but that it is coordination thing. They think that it is something that with some work we can make better. We are going to get a therapist that comes to our home a few times per week to help.

With her other skills she is right in target for her age. She is sitting up, crawling and even pulling to a stand. Her speech is also a little delayed, but that goes along with the feeding issue and can all be worked on.

I am also waiting for a speech therapist in NJ to call me back about an evaluation. Hopefully we can see her next week and get things started.

Endoscopy

Well today Brie finally was able to get her endoscopy. Her cold is much better and she has been in good spirits. After a week on the Elecare we have not seen any improvements in her eating so we proceed with the test. She was given general anesthesia and they looked at her esophagus, stomach and small intestine with a camera. Everything looks normal. They also took some biopsies to look for infection, inflammation, milk protein allergy and celiac ds. Those tests will take about a week to come back. Hopefully they will show us something. If all is normal I am not sure what the next step is. Something has to change because we are barely getting 20 oz into her a day and she is no longer growing. We went to the pediatrician yesterday so they could check her prior to the procedure and in one month she has gained no weight. She was 14 lbs 10 oz last month and yesterday she was 14 lbs 12 oz, and that is with her just eating 3 oz in the car on the way to the doctor. So she actually has lost an oz. At her age weight gain does slow down to about a pound a month, but not gaining is not acceptable. The pediatrician yesterday said that normally he would have had us wait another week to have the test done, but with what is going on he felt it was best to proceed even with some residual cold symptoms. We will keep you all updated on her progress.

Well Gabrielle was not able to get her endoscopy yesterday. She started with a cough and wheezing on tuesday night. After a really rough night we talked to the GI doctor and the pediatrician and made some changes in Gabrielle's feeding. We changed her to an elemental amino acid formula that is suppose to be very easy to digest and has no milk protein in it. If she has a milk allergy this should help. She has tolerated it the last 2 days. It actually smells better then the nutramigen formula we were using. The GI also gave us another medication to help with gastic emptying. We are going to give the new formula a chance to work before trying it. Hopefully her feeding will improve and she will not need the endoscopy, but if she does we can do it any wednesday. I would like to see her completely healthy for a week before we proceed with anesthesia.

As for the cold, Brie is doing a little better today. Yesterday she was wheezing after only 2-3 hours with the breathing treatment. Today she is able to go 4 hours and is not coughing nearly as much. She has been in good spirits and is crawling everywhere. She loves to stand up and "walk" everywhere. She is able to pull herself up and stand in her crib and on her exasauser.