Making progress

Wt: 19lbs 11 oz
Ht: 29.5"
Age: 16 months/13 months

Connor is slowly gaining weight, but we will take it! The first weight check after doing 2 weeks of the blenderized diet was not a fail but he did not gain, he weighed exactly the same! I was happy with that since I was expecting him to loose with such a diet change. The nurses seemed to panic when he didn't gain but his pediatrician was satisfied with it. Connor had gone an entire week without ANY vomiting, had an increase of interest in eating food, coughed and gagged way less, and just seemed all around more healthy. We continued blending away and slowly increasing his volume, he is up to 6 oz now! I never imagined he could tolerate that much due to him vomiting after 4.5 oz with formula! Then his next weight gain, 2 weeks after the plateau.......he gained 8 ounces!! I was thrilled and over the moon that he was finally gaining a decent amount of weight again!

The part that we can't figure out is why he went back to vomiting after that 1 week of being free from it. He is back to 1-2 times a day of vomiting with no consistent pattern so we can't figure out what the issue is. :( He goes to see his GI doctor this week, I am hoping that he will help us figure this out. Poor thing shouldn't be vomiting after his nissen, much less doing it everyday! The last time he was at the GI , his doctor had mentioned doing another EGD (scope) to see if there is something we are missing. He wanted to wait out the start of the blenderized diet and then determine if it was still needed after Connor had adjusted to the new change. So, I have a feeling another EGD is in Connor's near future.

So we need to get this little guy eating by mouth! I had a break down moment after feeding therapy a few weeks ago. After seeing all these other children and babies eating and drinking and watching Connor continue to throw food, refuse and not improving - I just lost it in the parking lot. I was hooking the syringe to his gbutton and just started bawling, having this weak moment of wondering why my child can't do such a simple survival skill. I think the hardest thing about it is knowing that he can do it, he was drinking bottles like no tomorrow when he came home from the NICU. Even though he never expressed any hunger, he would suck down his bottles and even take a few bites of food from a spoon. After having my moment, I have been determined to find the right method Connor needs to encourage him to eat!

I have been researching feeding clinics all across the country, I have even read about some out of the US. I have been reading different methods: the Graz method ( weaning tube feeds to make him hungry) and behavioral methods ( positive reinforcement with toys). After Josh and I had many discussions, we are attempting to try both of these methods at home. With the help of a dietitian, we have cut back on the number of feedings. Instead of him getting 6 feeds, every 3 hours he is now cut back to 5 feeds. She ultimately wants us to cut back to 4 to encourage him to eat by mouth, it is kinda hard to want to eat if he is full all the time. We also started using a specific "feeding toy", when Connor opens his mouth for a spoon or cup then he gets to play with the toy. If he fights or pushes away then we take the toy away until he opens and eats the food. This is quite a challenge but Connor is a smart little guy. He catches on to cause and effect rather quickly, he usually can last about 10 minutes with this method before he is completely done. We have been able to get 10-20 bites/ day like this where as we could only get 2-3/day previously. If we aren't able to get him eating then we will consider traveling to where ever we need to go for weeks of intense therapy. I am positive and hopeful that we can get him eating again. Here is a video (sorry, rather long! I recorded it for his therapist who is using it in a feeding seminar) of us trying to feed him:

OK, enough of the feeding stuff (sorry that consumes our life, that is all we do everyday so it is constantly on our minds).
Connor had a little NICU pool party with sweet Zuri and Kennedy. Here are a few pics from that, all of them kept their backs to each other most of the time :)

Connor, Kennedy & Zuri- impossible to get a good picture of 3 moving 1 year olds!

Playing in the pool

We also took Connor to his first Music and Movement class offered at our library. The first week was not good for him. I believe he was in sensory overload and didn't want to do anything that he was supposed to do! There were a ton of 1 year olds plus mommy's and chaos!! I was in sensory overload myself! Haha The second week, it was more organized and Connor handled it much better. I am hoping that with him having more interaction with other children his age that it will help improve all of his skills.

At his first Music & Movement class, not so sure about it!