Sito (Andrés Jr) is now 67 weeks 0 days old!
Its about time I post some updated pics of Sito eh? Well, Becki actually got these uploaded onto the website. He is going to be walking really soon and he is already trying to climb up on things. OH BOY
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Me munchkin is officially 1 year old today at 2:57pm. Good times! I will post pics once we actually hold his party.
I have to start planning the little dude's 1 year old birthday party. CRAZY
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Here are some 9 month old pics:
Go Sito!
This week has been amazing as far as Sito goes. On Monday he had his 2nd neo-natal follow-up appointment and the doctor was very happy with his progress. We got some more tips on helping him catch up with his physical abilities. He now sits up on his own for extended periods of time and loves playing with all his toys. His rolling from back to belly is almost there, and he can also stay in crawling position (without moving) for a good 15-20 seconds now. He likes to rock back and forth in that position. His leg strength is still a bit weak, but he is starting to get the hang of it and knows how to exert force with his legs so he stands with support from mom and dad. I figure another week or 2 and he'll be doing vertical pump kicks!
Monday night, we had somewhat of a scare with his nG feeding tube. At that point Becki and I took it out and decided for ourselves... NO MORE FEEDING TUBE! I called his GI doctor the next day to keep her in the loop and she said it was fine and we would talk more on Thursday (today).
Today we had the GI appointment and we discussed the results of his last set of blood labs done on Friday. Everything is beautiful and in normal range. The ALT enzyme which sky-rocketed before the holidays and caused major concern (and there was talks of actually needing the 2nd biopsy) is now just above normal range. The upper range of normal for ALT enzyme is 42. When it sky-rocketed it shot up above 350. Not long after that though it was down to 80, and now it is down to 50.
The GI doc was also very pleased with his physical progress, mental progress, and his weight gain. We talked about his feeding and she gave the thumbs up to stop the feeding tube for now. She gave us some more tips on feeding, and told us its time to have him start to eat meat (not real meat... baby food meat in a jar) because it has lots of calories and fat which is good for his weight gain. She also told us to add a little bit of extra light olive oil, as that is good for him and has a good amount of calories. We now have a daily target of 700 calories per day, with a great start for today ending at ~730 calories.
Once we added a tablespoon to one of his solid meals, we discovered not only is it good in terms of calories and fat, but it seems to also coat his throat and make food go down easier. We haven't seen him eat with such gusto in a long time and we stuffed him good at 5:30pm. We kept laughing cause after that meal, he sat in his high chair just zoning out and not moving cause he was so stuffed. We would call him and he would turn his head a tiny bit, take a deep breath and sigh, and turn back to watch his cartoons.
Needless to say we are on cloud 9 right now and it feels like we finally see the light at the end of the tunnel after almost 9 months. Our appointment went by so fast, we didn't have to stop by phlebotomy to get more blood drawn, we don't have to go back for another 2 months, AND (the best part)... NO MORE FEEDING TUBE!!! We were so shocked and happy we just walked out of CHOP forgetting to drop off some paperwork at the GI front desk. OOPS.
Its about time I added another news entry on this here website right? That last news item sat there for over a month. Anyway, today was a very busy day for us. Sito had his urology follow-up appointment at 9am and his pee-pee got rave reviews (LOL). From there we came back home for his 1pm physical therapy and I got to meet the PT. She was very nice and Sito is doing really well with sitting and finding his center of gravity. Now if only he would eat a bit better :-(. At 3pm we went for his 6-month cardiologist appt and things are looking well there too. He still has an ASD (small hole in his heart… somewhat common… usually closes on its own) but we will just keep checking on it every few months.
In between the 9am and 1pm appointments, we swung by the Willow Grove mall after that and got Sito's picture taken with Santa. I was a bit bummed we didn't take his nG feeding tube out for the pic, but Becki had a really good point when she said "this is our reality this year. We can look forward to next year's pic when he won't have or need the feeding tube". Hard to argue with that logic :-)
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We got home from CHOP today around 2:30pm. Overall it was a pretty smooth experience and we came out of it feeling pretty good. I think the fact that we already knew what was going to happen helped, unlike the emergency trip in September.
Now, before I continue, I have to say I almost choked a phlebotomist out last night. Sito has had to get blood drawn quite a few times over the course of his life. We have come to know that it is impossible to draw blood from his arm (the spot on top of the elbow, where blood is usually drawn from). The good spots are the veins in either foot, or the veins on the back of his hands. We have seen far too many times where a phlebotomist or a hematolgist tries to draw blood from his arm, and they end up fishing and fishing with the needle trying to hit the vein. Meanwhile, Sito is screaming his head off and Becki and I just can't take it.
Now, keep in mind, we know the blood draws are a necessary evil. We know they will be painful for him no matter what, but we want the pain minized. When a phlebotomist comes, we always tell them up front "from the back of the hand, or the top of the foot, do not draw blood from the crook of his arm". This one lady last night, she smiled and said "OK" to me, and then proceeded to completely ignore me and started going for the blood draw in the crook of his arm. I couldn't believe it but she was already in there so I had to hold Sito. She was fishing and fishing and after a bit gave up. I lost it and just started ripping into her verbally. After that we demanded a senior phlebotomist who came, took the blood from the back of his hand in about 30 seconds and that was that. I filed a complaint against the other phlebotomist. What she did was ignorant, rude and completely unprofessional. Whenever it comes to children, parents have the ultimate say on what gets done and what doesn't get done... and when she ignored me she completely stepped out of line.
OK, now that that story is out of the way... the liver biopsy itself went fine. It was very quick and Sito was sore on his side for a few hours but he slept it off and was back to normal by the next morning. Going in for this visit we knew he would be getting an nG (nasogastric) feeding tube. Its a thin plastic tube that is inserted through his nostril and it goes down into his stomach. It helps him with his feeds when he gets picky and fussy. He was averaging 20 oz of formula per day, but he really needs to hit 24-25 oz per day to continue gaining weight normally plus gaining some extra "catch up" weight. Becki and I had to attend classes and become familiar with inserting the nG tube and working the equipment. Its fairly easy and we know it will yield huge benefits to him having his feeds supplemented by the tube. The nice thing is, during the day, we continue ad hoc feeds (he eats when he wants), and then from 10pm to 8am he gets 1 oz per hour automatically by pump while he sleeps. It allows Becki and I to get a bit more sleep which is really nice.
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Now sit still for your liver biopsy!! :-(
Becki, Sito and I are back in CHOP until late Saturday/early Sunday. We got here around 8pm tonight and got admitted fairly quickly. He had really long naps today and was WIDE awake well past his normal bed time. The hospital usually wakes him up anyway, with it being a different environment, bright lights and people constantly coming in to check him and assess his status.
Around 4:00am he will have his IV inserted and from there he can't eat until after the liver biopsy, which is scheduled at 1:00pm. The liver biopsy itself is really quick, and its not open surgery fortunately. He is going to get some meds to relax him (the doctor said he will be "drunk") and then a thin needle is inserted between 2 of his rivers to grab a tiny slice of his liver. From there we have to wait about 10 days for all the results to come back.
Once again he has the nurses in love with him. The nurses have secretly dubbed him 'cutest kid on the floor' and many have asked to be his girlfriend. He's a playa, thats for sure.