Happy belated b-day Noah

Happy Birthday

Thanks everyone!

Noah had a great b-day party. He did surprisingly well since there was a lot of people here that he is not familar with. I expected him to cry alot, but he got used everyone pretty quickly. I made him his own cupcake with whipped cream icing so it would be extremely moist since he isnt used to table food texture. He stuck his finger in it, then grabbed it with his hand and squeezed it. He would not put any in his mouth, but he did let me put a little in his mouth. Everyone sat in dead silence while they watched to see what he would do. Since my whole family and most of our friends know of Noah’s eating issues, they stared at him as if he was supposed to preform for them. It was an uncomfortable situation for me. I’ve never been to a birthday party where it was so quiet and all eyes were on him for so long. After about 5 minutes everyone gave up. Noah ended up squishing his cake and smearing it all over everywhere except his face. I just cleaned him up and went to open presents. That went a little more smoothly. He enjoyed the paper most of all and his brothers ended up opening the majority of his gifts.

We all had a good time, but to be honest, I’m so glad its over. I was stressing about the cake issue and how everyone would react when he wouldnt eat table food or his cake. I only heard one comment about how tiny he was. I was told that he looked like he was 6 months old! I just laughed it off. We had lots of good conversation and company and everyone enjoyed seeing Noah, and thats what the most important to me.

Happy (belated) birthday… sorry have been away with no computer on hand… sounds like you handled it just fine!!

Hey Lisa

we were in the south of spain for 10 days… was such a nice break. Matthew loved it down there because the weather was nice, he was walking all over the little town and had a ton of grass and flowers to eat… LOL… he puts everything now in his mouth, except food, but if i left him for one second he would be trying to get dirt or grass or even a worm into his mouth!!!

Eating… we are really struggling to understand what is going on with him. He was without the tube for a week and did not eat much — he was weighed and had dropped a bit so we put him back on for 3 ays. Then he started eating — no breakfast, but around 10 ounces of formula + plenty of solids… for a week. We were amazed, truly amazed. He looked healthy again and happy. Then about 5 days ago, he just stopped. And when i mean stopped is stopped. For 4 days he would not touch formula, or anything else. I did not feed him anything through the tube other than water to see if he reacted and was hungry. Well he did not. Yes, hungry, because he was in such a fowl mood, crying, cranky. Then yesterday we started the tube again, for 100% of his feedings.

So i am so tired of this. If he ate something, anything during his crisis but he will not. He has done this a couple of times before, so right now we have gone through 2 phases of 100% orally fed to 100% tube fed. And i really do not understand what is causing this.

I am so tired emotionally and it is becoming harder and harder — but i am sure that you are going through the same thing as i am (and others) so you know how it is. I sometimes lose my temper now with Matthew and that is awful but i am SO SO SO frustrated. I am scrambling to understand what is going on. The doctors are amazed. They don´t understand why he will eat NOTHING, absolutely nothing for so long. BUt it is like a cycle, and the only way to break it is filling him with the tube. So we are there now.

Sorry to ramble… on a good note, we are going back home on wednesday! Yes, i am an expert at the tube now and can handle it well and i know more or less how much to feed depending on what he eats etc so we are going to trust other doctors and see what happens. I am not that confident but maybe they will give him an appetite stimulant? I know my ped here said no until they are 2 but i have seen people on this board and another one with young babies on it and maybe that will help???

How is Noah… apart from being one year old already!! Must feel great to have survived all his issues for a year, and you should be very proud.

It is really sad when our own family does not understand what we are going through, isn´t it? I do really want to be back in NY but at the same time i am really going to miss my parents because they have been amazing and their support has been so welcome. They have driven us everywhere, we have scheduled our lives around matthew´s feedings and they have not complained once!! When we drove to the south, we left at 9pm… matthew´s bedtime because then he would then at least not have to eat on the way etc etc.

The 6 spoofuls don´t seem like a lot, but hey, Matthew is not even doing that right now and yet he was doing 50 or so a few days ago… so there is hope!!

We are leaving today… so wish me luck on the 8hour flight!! by myself with a restless baby who will not eat… thank god for the tube!!