Update on the kids

KAITLYN UPDATE: Okay, so Kaitlyn has been having a lot of increased GI issues for the last couple months. When she was first diagnosed and hospitalized the doctor had put her on Zenpep (enzymes). They worked GREAT for about a month, then slowly she got worse and worse. They kept increasing her dosage until she was on the max dose possible. Still there were no changes with the max dose, so the new GI doctor switched her to Creon. She has been on Creon for about 2 weeks with no change. She has lost weight again, though not a severe amount, it has dropped her back into the 10th percentile (they want her in 50th). She has however grown a very slight amount, she is in the 25th percentile (again they want her in 50th) for her height. Kaitlyn is already on several antacids, so they can't really prescribe anything else for her pain & discomfort (nor do we want them to, as Kate is on enough meds). They decided to up her dosage for the Creon, and see her back in a month. Hopefully that will help, but she started that yesterday and as of 24 hours later that hasn't helped either. I know it may not seem like I am being patient enough, but when she went from no treatment to Zenpep there was an immediate difference the very first time she used it. Anyway, we will be watching her closely, because they don't want her to lose anymore weight.


Also, turns out Kaitlyn's clinic appointment (CF clinic with the pulmonologist) was canceled due to Dr. F having a family emergency. Unfortunately it was very important that she be seen, due to the cough she has had for the last few weeks. I asked when they would be able to get her in, and they don't even know when Dr. F will be back. Then they said technically they don't have any appointments available until MARCH, so they have to wait to see where Dr. F wants to "squeeze her in". So since I have no idea when that will be and I am not comfortable with her waiting any longer, we took her to see the pediatrician today. She agreed that it needed to be addressed, and has put Kaitlyn on another dose of antibiotics. She is treating her as if it is bronchitis, but without a culture there is no way to be sure. If these antibiotics don't help, she said she will call Dr. F and insist she get in immediately. This is Kaitlyn's 4th round of antibiotics since September, so I am hoping they will work and she won't need anything stronger.

GABBY UPDATE: Gabby also saw the ARNP. Of course as they called to tell us earlier the genetic test for CF showed NO mutations!!!!! This means Gabby is not even a carrier!!!!! Almost all of the other tests they did on her came back normal with one exception. I don't remember the name of the test, but the gist of it is they believe Gabby is also lactose intolerant, just like Kaitlyn. (The only way to be 100% sure is biopsy, and I didn't want that and they agreed). They prescribed Miralax (for the constipation) and Prevacid (for the reflux) and have me avoiding as much lactose as possible. I don't know that I can cut out anymore, seeing as how Dr. Ross had been thinking she had a protein allergy and had me avoiding lactose and all beef and lamb products as much as possible. That being said, she also follows up in a month and at that time we will see if Lactaid enzymes are needed for her as well. She has started evening out in height and weight though, so that's good.

JOSH UPDATE: Josh has had no doctors appointments, because as always, he is the picture of health!!! He is probably more healthy now than ever before because he has gotten into weight lifting. He is even on the weight lifting team at school! He looks more and more like a man and less and less like my "little" boy every day :(  Unfortunatly, I can no longer threaten to "cut him off at the knees" as I am pretty sure that he could take me.