Another long week gone and over. On Monday Emma started a fever and shortly after she had a really dry cough and sore throat. On Tuesday just to be safe we thought she should go in to be tested for the flu and strep. Of course, despite having the flu shot, she tested positive for Influenza A. They put her on Tamiflu and Omaha decided Trey needed to be tested and also put on Tamiflu. Thankfully Trey tested negative for both A and B. That night Anna started a fever and the next day she had the same very dry cough and sore throat. Her doctor was guessing she also had influenza A, she then started on the tamiflu. As much as possible we kept both girls isolated in their room. It must’ve worked because so far Trey hasn’t gotten it. Thank you God! I really wasn’t looking forward to more days in the hospital.

Trey and daddy visited the ENT docs in Omaha last Thursday (grandmas birthday). They determined that his breathing is better and that he appears to be feeling better and released him from their care. From there he went to the Transplant team. Jeff reported that Trey had so much fun walking around with all of the nurses and staff. Big weight gain for Trey. He weighed in at 21 lbs 7 oz and this made the the whole team happy. Everyone agreed that his breathing is so much better. Incase Trey is still aspirating the team decided to still not allow liquids without being thickened until another swallow test is done. There is slight concern with Trey’s AST and ALT being elevated. They have been gradually going up the past couple of months. There was talk of a biopsy but they decided to hold off. With him having or been exposed to so many viruses lately this could be the reason. His FK (Prograf) level has been high again lately. We are going to try .5 mg every 8 hours. Twice a day was hard enough now we’ve got to rememer 3 times a day.

Today he had labs along with several viral tests. We are awaiting the results.

On Tuesday Trey receives his RSV shot, on Wednesday he will have the swallow test and on Thursay Jo, Occupational Therapist, from LPS will be working with him on his eating and swallowing.

Trey is now almost running. He has always liked books and now he really likes them. We read several a day. He likes to throw his balls and chase them. He also likes all of Emma and Annas things, plus everything in the pantry and cupboards. I have been finding all kinds of things in the garbage can. He has also started to talk more. He can say Emma, Anna, moo and of course mama. He really has started picking up on things like when you ask him to get something he knows what it is. He is so much fun. What a blessing from God!

If all goes well Trey doesn’t have to report to Omaha until April 5.

Last year, around the time of the benefit barbecue, Paula Guerrero contacted us with an offer to take professional pictures of Trey and the girls.  She owns and operates a studio business called Captured Memories by Paula here in Lincoln.  With Treys transplant coming so soon after the benefit, we never had the opportunity to take advantage of her generous offer until now. 

Last Saturday morning the five of us made it over to her studio and spent the next hour with her taking pictures.  Follow the link below to view the proofs.  If you’d like, post a message with the number of the picture (or pictures) that you like best.  We meet with her again next week to pick some out.

When you get to the site, the username is gulzow and the password is proofs.  Make sure to enter those in lowercase with no spaces before or after.  If you have a pop-up blocker on your computer, disable it before clicking on the link.

Click here to see the pictures 

Trey had a clinic visit on Thursday in Omaha.  At this appointment they asked us to keep doing everything that we have been doing.  He weighed in at 20 lbs 10 oz, which they seemed somewhat happy with but weren’t ready to celebrate.  When listening to him they thought he sounded better.  His liver numbers were up a little last week.  Some of this could be due to him being some dehydrated.  He still isn’t liking his thickened drinks but we keep trying.  They upped his Prograf just a bit and he will have labs again Monday morning.  With these labs they are also going to be testing for some common food allergies.  It is a possbility that an allergy could be causing the reflux or reflux symptoms.  Instead of crawling today, he walked around 50% of the time.  He had his 1st non family babysitter for a couple hours Saturday night and surprisingly he did really good.  Today he hasn’t been feeling the best.  He seems to be coming down with a cold.  We are learning that the transplant was a cure for BA but living with a transplant is going to be full of doctoring and lots of scary moments for mom and day.  Through it all Trey is staying stong! 

Trey visits the ENT doc on Feb 22 and after that appt we walk down the hall to see the liver team for a clinic visit.