Philip almost met his goal set by the dietitian! He weighs 20.99lbs which is 74th percentile! He is 72.2 cm long (76th percentile). He is 112% of his ideal body weight. They would like him to gain 1kg in the next two months, and are overall very pleased with his progress. We were told we can go ahead and start finger foods and meats with him. The doctor decided to add Prevacid to his medicines, and eventually do away with the Zantac. We also added flouride drops, so he currently is getting 6 syringes of oral meds a day. Whew. When we get rid of the Zantac, that will decrease to 3 syringes. His SP02 was still 100% and his lungs sound clear. We were very pleased with today's visit and excited that he has been able to maintain such a good weight even though some days he doesn't drink as much as I think he should. We return in 2 months.
April 21, 2010
We have been doing half of an enzyme with meals for about a week now. At clinic today, they did a fecal elastase test to see if Philip is pancreatic sufficient or if we need to adjust the enzymes again. We will probably get those results next week. Philip met his growth goal for the most part. He is now 2ft 5.4 inches which was a growth of 95% of what they expected for his age. His weight goal was not met though. He only met 82% of the expected weight gain. It is all very confusing. He is not underweight by any means for a child. He just did not gain what they wanted him to. They want his weight to length to be 50-85th percentile. He is currently 77th percentile. So, that part is great. They had expected him to gain between 1-1.5kg. he gained 0.6 kg. So, they are having us add a few things. We are adding 1-2 Tbs of Scandishake to his fruit each day. (For those who don't know, Scandishakes are very high calorie powder drinks). This will give him about 150 extra calories a day. We are also to add a snack. She suggested egg yolk with mayo on crackers! We did that tonight and he enjoyed it. I never thought I would be feeding my baby mayo! The doctor rechecked his ears and said they were all clear. We met with the physical therapist. He told us what we were doing was perfect and I got some smaller percussor cups so I can do it with both hands. Philip prefers the cups over my hands when doing his chest. He returns in 2 months. Since it is his birthday, they will also do bloodwork and radiographs...nice birthday present, huh?
June 30, 2010
Today was such an awesome visit! When we first arrived, they sent us up to radiology. The Dr said his lungs look clear. Today he was 77.5cm-=73rd percentile in height. This was 93% of his expected growth for height. He was 113% of his Ideal Body Weight. Today he weighed in at 25.5 pounds! The ideal weight to length ratio is 50-85. He was 93.66!!!He gained per day 186% of his expected weight gain. He has never had a clinic visit this good. Now we will be transitioning him to whole milk. In order to do this, we will be transitioning to evaporated milk and then to whole milk. Breast milk has proteins broken down, so they want to do this gently as to not upset his GI system. They took a throat culture and we will get results next week.
We also had him fitted for a VEST today. He is plenty big, so we will be submitting a request to the insurance company. This is a $15,000 + product, so I am sure we will be going through an appeal process. For those who are unfamiliar, the VEST is a device (a vest), hooked up to tubes and a machine. When he wears this, air will push in and out of the vest, shaking his chest very rapidly. This will take the place of our hand percussion physical therapy, although I will probably still do it by hand some. After his office visit, they sent us up to lab. While we were standing in the lab, Philip fell asleep in my mayan wrap. The phlebotomist told me to wake him up, but we couldn't. The CF center had placed emla cream over his arms to help with pain. The lady stuck the needle in his arm and he never even woke up. However, she missed the vein! Unfortunately, he woke up as we switched sides. He cried for a couple of minutes, and after she dug around in his arm for what seemed like forever, she finally got blood. Overall, though, this visit was his best ever!
sound asleep!
September 22, 2010
Today's clinic visit went better than I expected. His weight (27.5#) and height are so good that the nutritionist did not even come in. We stopped the very small amount of Scandishake we have been adding. Philip is on Augmentin due to a sinus infection. Clinic did a throat culture to make sure there are no new bugs. I hate this. I know it is routine, but now we all hold our breath until Monday for results. He did tell me if there are any preliminary results he will call me this weekend. I definitely do NOT want him to call me this time! Today we were referred to a pediatric GI specialist to see about his abdominal distension. It is still present, and all of the laxatives never caused diarrhea. The specialist saw his previous radiograph and agrees it is abnormal. Dr Schmidt did say that in general, Philip is everything he would want to see in a CF child, personified, with the exception of the belly issues. He thinks that because Philip is borderline pancreatic sufficient, all of the trial and error with the enzymes may be causing this partial blockage...atleast that it what we think we are dealing with. I guess we will find out Tuesday. Philip seems unfazed by all of this and in no pain. That is what is important!
14 months old
December 22, 2010
Clinic today went well. Philip's weight was 28lbs 13 oz (13.06kg). He gained 0.59 kg. His height was 84.5cm (an increase of 1.5cm). He made 110.68% of his ideal body weight! His BMI was 90.17% (up from 85.95). Goal is 50-85th for cfers, so technically he is overweight...but nobody is complaining! They did an xray due to the cough he had the last couple of months. Lungs were all clear and no changes. We should get results on his culture next week. The xray did show he had a lot of stool in his intestines. We already have a GI appt in a few weeks so we will see how that goes. Last week we upped his enzymes to one capsule. He has also been on Pulmozyme for almost two weeks and that has helped. Today he actually woke up coughing but his brothers have a cough too, so we expect a round of something is coming. The clinic loaded him down with Christmas presents and we go back in 3 months!