Appetite

Some of you may know this already, but it's been a week since Jaime has started his Periactin, a new medication to increase his appetite. See, when we went to GI last week, we were told that Jaime had fallen off his curve! Having said that, he's been working VERY hard at chewing since January, his last appointment with GI. Dare I say, he's been "eating" more solids and drinking less Pediasure. The pediasure he's on has been a high calorie one, containing 360 calories per 8 ounces. Since he's eating more solids and has a small, abnormal shaped stomach, combined with his slow motility, it's hard to both EAT and DRINK. Unfortunately, (or fortunately, however one looks at it), Jaime's calories are being sacrificed by his new chewing skills. Hence, Jaime has fallen off his growth curve. In an effort to get back on it, Jaime was put on Periactin.
Let's fast forward to today. Jaime has been receiving 1 teaspoon of Periactin before every meal. Well, that is except for dinner tonight. I got so busy preparing dinner that I missed his dose. For all the "nay-sayers," I HAVE noticed a significant difference in Jaime's eating on Periactin. He has only vomited (or tried to vomit) just a few times since starting it. Tonight at dinner....he ate about 6 green beans and 1/4 of a baked potato....much LESS than he has been eating since starting Periactin. So, that moral of the story is for us NOT to miss doses! Of course, Jaime's on a 3 week on, 1 week off regimen at this time. It's not a "cure all," but it's a nice jump start! I have not weighed him, so I don't know if he's gaining or not, but I do know that he's eating more, so that's a good thing. It does make him sleepy, but so far, he's able to maintain his normal upbeat self!

In other news, for those of you who didn't read it on Facebook....Jaime had a spontaneous nosebleed yesterday, which is never good when you're a hemophiliac. It lasted long enough to require IV medication. We had to take Jared to camp, so I really didn't have time to take Jaime to the ER....I told Jaime we were going to do it very quickly (silently praying that I would actually be able to stick him and get it in 1 try)! Jaime asked if he could help....WHAT? OK.....so, we sat on the floor in the middle of the living room and made our "sterile field." I put his tourniquet on and hoped for the best. I kept telling him to pump his fist....I found a BEAUTIFUL vein and went for it....he sat STILL asking if he could put his medicine in....SURE! I taped the needle in and let him have at it! My FIVE YEAR old infused HIMSELF with his Factor and flushed his IV line....to finish up, he pulled his own needle out! It was simply AMAZING! We're still rejoicing about it! Jaime asked for another one, tonight! HAHA, NO WAY, little man! It was the best "needle" experience we had and we did it together. I am more confident than ever in sticking his tiny, crappy NICU veins based on that one experience alone! It was a GREAT DAY!

First Self-Infusion, Age 5!

Final note....We're due back in Cincinnati soon for Jaime's cardiac MRI, in which he'll be sedated for (I always HATE sedation, but it's a must for this test)! We will also being having a full cardiac and pulmonary work up....here's to great test results and us getting 1 step closer to Jaime's Pectus Excavatum Surgery!

Thanks for reading.....

P.S. To all CDH Families....if you're in the Cincinnati area, there will be a little get together Wednesday, July 16 at 6:00....any and all are welcome to come, contact me for additional details.
Also, if you're in the Cleveland area, there will be a CDH Family Picnic on Sunday, July 27, 2014....again, ALL are welcome to come....please contact me for details if you're interested. Hope to see you there!