ENT appointment: we have a date

The ENT appointment went really well on Thursday. The doctor was a hoot and very good. He took one look in Cooper's mouth and said the tonsils have to go. They will also be taking the adenoids as well. I explained to the doctor Cooper's history with anesthesia and the difficultly he has waking up and breathing on his own. He said that some of the trouble he had in the past could have been due in part to the tonsils. But, he said Dr. Hadeed(the pulmo) likes to keep his kids overnight for monitoring, so we will be staying in patient. I am very thankful for this. Cooper will have a pre-op with the pulmo on March 4, then the surgery itself will be March 5. We do not have a time yet, but we are expecting it will be early afternoon. For now, we just are trying to keep him comfortable and fed. He has been eating better. It seems to go in phases, every other day he eats well. The ENT said hungry is a good motivator, and they eat through the pain and discomfort. So I guess he eats one day, then isn't as hungry and takes a break, then is hungry the next day and eats again and so on and so forth. He is doing about 12oz of formula now and mostly potatoes and applesauce, but he is still having dirty and wet diapers, so I know he is fine. Thanks for all the thoughts and prayers. Don't expect too much from the blog until the surgery is over and he is recovered. I will be doing the 365 project, just late and missing some days, but I won't be doing the menu, at least for now.

Cooper's GI appointment

Sorry it took me a bit to get this update to you, I hadn't had a chance to get online. So are you ready for the great part, the weight part!? Cooper weighed 22 pounds (naked weight) which put him in the 50th percentile, you heard me right, 50th! He went from below the 5th a little over 2 months ago, all the way to the 50th. Amazing what a high cal, hypo allergenic formula can do. He said to continue the full dose of the meds and keep attempting to add new foods one at a time. All his blood tests came back negative, but the GI said that means nothing because he has never been exposed to those foods, and we will continue to hold off on the top 8. We will retest for allergies at his next appointment in 6 months. I let the GI listen to the recording of Cooper's breathing from the other night. His words were, "that is quite impressive." He asked when we see the pulmo and I told him he had been released unless we needed him. He said he would call Dr. Hadeed(pulmo), and see if we needed to go see him. I also discussed the tonsils with him and he said he did not believe it was soley the reflux, but after seeing Cooper gaging and choking on some rice chex he advised we consult with ENT, so we will discuss that with the pedi soon. All in all it was a great visit, by far the best we have ever had.

Pulmo appointment

Cooper's appointment today went great. At his last visit with Dr. Hadeed, he weighed 12lbs 4oz. Today he weighed a solid 14lbs 9oz! This was an amazing gain. He is now in the 10th percentile. We are back on the charts for the first time. Woohoo! I am so happy. He doesn't have to come back until September, 3 months; this is the longest stretch yet. At that time we will discuss going off the meds. Please be praying that this will be a possibility as he has been on them since 5 days old. After his appointment, we went to Whole Foods and stocked up on lots of gluten/wheat, dairy, soy, egg, ect... free food. I got some yummy stuff. I'll post some of my favorites later. I also got Cooper lots of organic baby food. We should be good for a while.

Catching up

Wow, am I behind on posts! I will be attempting to catch up throughout the day. Cooper is having a major reflux flare up. I feel like were back to 2 months ago when we were considering the fundo. His weight is still good though, which is of up most importance. It has just been really hard. I thought we were past this. I'm really not sure what is going on. Maybe it's the teething, maybe he has a bug that is making it worse. Whatever it is, I hope it is over soon. His poop is also very concerning. We have between 6 to 10 dirty diapers a day. I very rarely change a simply wet diaper. I took him to the pedi yesterday and they took a stool sample. We shall see if that sheds any light on the issue. I am really considering drastically changing my diet and seeing what affect, if any, that has. Anyway, on a happier note, Cooper has been apnea monitor free for a week now! We had a really good pulmo appointment last Friday and he said we could stop the monitor. I have done surprisingly well with this, only waking a few times to check his breathing. He doesn't have to go back until the end of June either. He really is doing so much better; we're just having a rough time for now.

Cooks appointment

Cooper had his appointment with the pulmonologist at Cooks yesterday. It went alright I suppose. He is gaining weight steadily now, but he still has quite a bit of catching up to do. The doctor is still concerned about the reflux and feels it is quite severe and we need to get it under control. He was also concerned about the high dose of Prevacid Cooper has been taking. He said that it is the same dose he, a grown man, takes for his own reflux! So, we have decided to cut it in half. We have tried pretty much every reflux drug on the market and have seen little if any improvement. We also had the swallow function study done. Cooper was not aspirating the barium when he took from a slow flow nipple, but when he takes from the breast, the speech pathologist could here him aspirating. She felt that he should probably take from the bottle all the time. I was, of course, upset to here this. When we went back to Dr. Hadeed's office, he agreed with her. I asked if we could put Cooper on monitors while he nursed and see if his O2 sats dropped. He had an excellent feeding and they remained in 97-100% which is perfectly normal. He said I can continue to nurse for now. While this is a great relief, I am also concerned because I know he aspirates when he is having a difficult feeding. Also, the doctor feels he aspirates on the way up, when he is refluxing. Dr. Hadeed thinks that it is time we start really considering fundoplication, the surgery to reduce the reflux. I'm starting to agree. We will go back on April 4 and meet with the pediatric surgeon to discuss the operation in detain before making the decision. At the time of surgery, they will also place a "button" or feeding tube in his stomach. This way we can run a formula drip all night long so he can catch up, but continue to breast feed throughout the day. It seems like this is really becoming our best option. I feel that over all our visit was successful and productive. We just have to hang in there over the next month.