"Let me check my notes...why yes, it has been far too long since mommy posted an update about me!"
The past few weeks have been filled with visits to Children's Hospital. Mason had his repeat sweat test done on 3.10.11. It was a little more difficult this round since he was a little more vocal about his discomfort with this whole process. Aunite Kris came along for moral support and I thank her so very much for it! I learned a couple things from this go round. 1. Mason no longer fits into most of the hats we have for him. 2. They do about 3 sweat tests a day. I was most surprised that they do that many since it really is only used to diagnose CF. 3. His sodium chloride levels were even higher this go round' in the low 100's (non CF people are below 40) and the clinic said this was to be expected since he is getting older, his brain is kicking out more hormones which affect everything. 4. My son is a strong little man who is fighting this cruel disease like a trooper!
This was the hard part...you would cry too if they hooked you up to this contraption!
all bundled up for 30 min to sweat...onsie, pants, fleece sleep sack, fleece blanket, and one ht a size too small for my head!
snug as a bug in Auntie's arms...can you tell I'm a little warm?
Then on 3.24.10 we took a trip to the Children's Hospital Clinic in New Berlin for a Liver ultrasound. Dr. Levy had requested that one be done due to his elevated liver enzymes (over double what they should be) that have been high since January 3rd. Derek took the day off and came with the little man and me.
He said he wanted to go in alone...already embarrassed to be seen with us. (sad face)
Mason was a trooper as always! It amazes me at this young age how he gives me strength to get through this crazy CF journey. Derek did a great job of entertaining him so that the Tech could get good views of his insides...and that I could also get a good look over the tech's shoulder...even though I really had no idea what I was looking at. The actual u/s took about 15 min and we were in and out.
The lady wasn't too happy about us taking pictures so this is the best one I got of him with machine.
Attempts to distract the little man. We gotta get one of those toys!
We had to wait until yesterday's appointment to get the results...which were thankfully 'normal"! Dr. Levy says that all the organs (they actually looked at 6 different organs) look like they should in a 7 month old little guy! She thinks the enzymes were elevated due to a viral infection that he showed no symptoms of. We did repeat blood work yesterday as well and Dr Levy called back and said that they got the liver enzyme levels back already and they are back to normal! What a weight lifted off our shoulders after such fantastic news!
"Lady, I think my liver is just about here. Can you see it on the screen now?"
Since I have already mentioned it...we did have Mason's CF clinic appointment yesterday. Grandma Pam came down to go along with us. The clinic encourages family who are close and care for Mason to come along, so as to better help understand this complex and involved disease. I will say this has been the best appointment to date! They are overall happy with Mason's progress. He is 27 and 1/4 inches tall now (55%), weighs in at 17lbs, 14oz (35-40%), ad his height to weight ratio has dropped to 40%. Medically he is doing well. we are holding off another 2 months on the albuteriol which is such great news! We have been asking about the infant PFT that they sometimes do at 9 months and they gave us a tour and a peek at the machine. Looks similar to THIS LINK HERE. Dr Levy is still on the fence about performing one since he is doing so well and it really is a risk vs benefit thing because they will have to sedate him for the procedure that lasts about 1.5 hours. He did get some more blood taken for testing vitamin levels as well since they continue to be a little off.
yep, those landed on the floor and were out of commission...CF clinic/Hospital floor means no more fun with that toy!
The biggest discussion revolved around his diet and food, which is usually the case. His Creon will be increased to 3 capsules a meal now. That is 13 pills a day or roughly 400 pills a month and it will only increase as he gets older! We are now going to increase his calories in the bottle...5 scoops per 7oz...that's a whopping 200 calories a bottle and one big pack of Similac every 4.5 day! Derek and I looked at the Similac package and it states that it makes 28 6oz bottles if you give normal scoops...we get 18 bottles out of a pack! With 4 bottles and the food he is eating now Mason is taking in over 1000 calories a day! We get to start trying new foods as well...biggest excitement is that Mason finally gets to try Grandma Kathy's mashed potatoes that his mommy loves so much...they have 2 stick of butter in them so they are perfect for the little man! We also are to give him the bottle first and then food since he has not been getting enough of the formula. So hopefully we will see a weight gain that will get up back up into the 50%. The main thing is that he is doing well, gaining weight, hitting his developmental milestones, and hasn't been sick yet! So we go back in 2 months instead of 6 weeks.
I have sooo much more to update you about what's been going on around here. Mason is eating food, sitting up alone, rolling all over the place, visiting family, and overall just giving us love! I hope to get some more posts in this week with a boat load of pictures.
starting to get filled up from each appointment
We had to feed the little man and ourselves after the appointment. I highly recommend the Deli at Children's Hospital...tasty tasty.
To end this oh so medically filled post on a cute non medical note...Mason wanted to show his support for the Brew Crew with opening day coming up soon!
I have sooo much more to update you about what's been going on around here. Mason is eating food, sitting up alone, rolling all over the place, visiting family, and overall just giving us love! I hope to get some more posts in this week with a boat load of pictures.
