I wanted to post because we are having a great day with Blake.  I took about 50 pics of him in the pool with Jeremy today and he was smiling and laughing and splashing the whole time.  I am so encouraged by everything Blake is doing and how well he has maintained some of his skills.  I truely believe that what we did in China has helped us.

So it’s been a week or so since the last post and Blake is still doing really well.  We have had no throwing up and when we weighed Blake he was at 47 pounds.  While in the hospital he was at 42 pounds.  I am noticing an increase in his energy levels also.  Jeremy left the house early this morning and I had him turn on my video camera to see Blake since Samuel is curled with me in my bed.  5 minutes after he left I heard Blake and I ran downstairs and he was yelling and laughing and kicking and being super active at 4AM.  I stayed with him because he was so active that he almost fell off the bed several times.  This was how he was a year ago and I see him at the same level.  He even bit my shoulder which he used to do when he would get excited.  I knew if we could just get his throwing up under control we would see good things. 

I am going to really start looking into China after we have the Blake’s Purpose golf tournament.  I think if he stays how he is it will be to his benefit.

I just wanted to say that we can’t get enough of Blake’s smiles today.  He is like a different child these last few days and I am not sure why but we will take it!!!  I was snapping some photos and had about 20 of him smiling while laying on his air mattress this evening so wanted to share them with everyone. 

Well Blake had a great weekend.  In fact the best I have seen in a few months.  He was very in tune to his surroundings and what was going on around him.  His facial expressions and laughs and sounds were so with it this weekend.  The only real change we have made was to change the concentration of his feeds and do a more continual feed through the J-tube.  He hasn’t thrown up or even wretched since last Wednesday so something is going on and definitely for the better.  Blake had physical therapy today and was very alert and active and was even taking steps with the therapist.  We are so happy for a great week and hope it continues.

Blake got out of the hospital on Wednesday and is doing well.  Of course while in the hospital he didn’t throw up but seemed really tired.  He did throw up once we got home but then we changed the concentration of our formula and we have been smooth sailing since.  Blake had horseback riding today and had a really good day.  Super alert and happy.  It still amazes me about how hard he tries.  While in the hospital I gave him a popsicle and he kept doing the more sign.  So as for now we are not doing the surgery.  We will keep trying at home to modify things until we see we have no other options. 

Things are coming along for the upcoming fundraiser.  We think it is going to be better than last years. 

We ran a couple of tests today and they all came back fine and Blake is tolerating his feeds fine over the last 24 hours.  We are going to add Neurontin tomorrow because they feel this may help him and see how it goes.  He was coming back to life this afternoon so we are hoping for the best and that he will be coming home soon.  If he tolerates his feeds over the next couple days then we will hold off on doing the nissen fundoplication which I hope we can avoid all together.

I just wanted to update everyone that Blake was admitted in the hospital today.  Again it is all because of his throwing up and not being able to figure it out.  It is too much for Blake to handle and this morning we went to see his GI and she then scoped him and ran some blood tests.  He has irritation in the esophagus and also his white blood cell count was almost double.  He will be staying in and having a bunch of tests ran so we can see if a nissen needs to be performed or if there is another reason why this is happening.  It is not fair to Blake that he has to go through this and we worry about him aspirating.

Jeremy is there with Blake and I will be returning in the morning.  Our GI was nice enough to put us in the PICU so Blake could be monitered closely and he has his own room.  He seems to be doing fine right now.  I will update and let everyone know more tomorrow.

For the most part Blake is still stable but we cannot get this throwing up figured out.  We are still feeding him through the J port at night and through the G port during the day and I think every day we are battling a little bit of throwing up.  We are going to try starting tonight for the next week to give him all of his feeds through the J port and if this works then we will have to consider doing another surgery to permanently place a J-tube and discontinue using the G-tube.  I am not sure if his stomach is that sensitive to his meds or he is just not able to digest foods.  Blake’s Dr. ordered a chest x-ray which he did today so we will get the results back tomorrow to see if anything else could be going on.

Things are moving right along with our preparations for the golf tournament.  So far we are on track to make it a great event.  We have a researcher who will be there to share her great progress thus far and hopefully we will have some more news in the months to come.

Just wanted to share a couple of pics of Blake in his stander and baby Samuel loves his sister.

Just a short update as we had such a hectic day today.  It was family picture day and our photographer came to us.  Sam skipped his nap, Talia was trying to fall asleep and Blake wasn’t smiling a lot but he looked really good.

I am putting on a pic of Talia from her last photo shoot.

So it’s been a 3 weeks since I posted but wanted to say that things are going OK.  Blake had his procedure to have the G/J tube placed and it was not going so well the first couple of days.  At night he would start wretching and dry heaving.  On father’s day Blake went back under so radiology could make sure everything was placed properly and it was.  For those who don’t know the J tube allows his feeds to bypass his stomach and go directly into the intestines.  The solution was to use these venting bags and it has worked.  Also they did a culture and Blake was still positive for the H Pylori which could still be why he was throwing up.  He is being treated with the antibiotics for a total of 30 days. 

Blake has been in the swimming pool alot since it’s been pretty hot over here.   He loves it.  He still has that beautiful smile on his face all the time.  One thing he is doing that sounds horrible is grinding his teeth.   Not sure what that is all about.

I didn’t have any recent pics of Blake so I posted one of Samuel and his soon to be Aunt Jessica.  We have been using the video camera more often so need to get the camera out.