Mackenzie's Clinic Visit

It's been a wonderful day - It's beautiful outside, Bunko with the girls is tonight and - most importantly - Mackenzie had an great clinic visit!

Up from 33rd percentile to 44th for weight!! PFT numbers either stayed the same or improved. Lungs sounded good.

Clinic wide treatment changes were explained (no more albuterol via neb or saline during vest time - changed to inhaler). Also a change for the vest - specific to her - she'll be flat on her back for two rounds. Also changed from Zantac to Previcid. Yesterday she finished the current round of TOBI and with the new changes that means I'll be going from needing to sterilize 5 nebs a day to 1 (for Pulmozyme).

Mackenzie's Check Up

Mackenzie had an appointment with Dr. Warren and we didn't have to go to LR!! It was so nice to finally be able to go to the new clinic in Lowell!! Dr. Warren asked how long it took us to get there and we said about 15 minutes. He said he likes to ask the families he sees here that question to see the smiles he gets. Mackenzie had a good check up...we still have to get some more weight on her - our goal is to get to 75 lbs. as soon as possible (so about a 4.5 lb. gain)! Dr. Warren told us about several drugs in the pipeline that are very promising, not a cure but something to stop the progression of the disease. So the plan is to be aggressive with Mackenzie's care to keep her lungs in as good of shape as we can until one of these new drugs is available.

Here is Mackenzie and Dr. Warren, we could not ask for a better doctor! He is the best.
Hooray! It's so much closer:
Here is Mackenzie with other members of her CF Team, Christina and Trudy. It was funny because they introduced themselves as their counterparts to who we see in LR...Christina is the same as Mary Jo (Social Worker) and Trudy is the same as Heather (Nutritionist). Everyone and everything was so nice.Her next appointment will be in January.

Dr. Warren was very proud of Mackenzie's fundraising too. Thanks to everyone's support there is a light at the end of the tunnel! I just went to her CFF site and there was more than the last time I checked - unbeliveable!

Annual

Mackenzie's check-up went okay yesterday. The results from her blood work came back normal and she gained 2 pounds (but the goal is for her to gain another 4 as soon as possible). Her Pulmonary Function Tests showed a little bit lower numbers than her last visit and her X-rays showed her lungs to have a little bit more mucus but Dr. Warren thinks this may just be from some sort of bug SO, we are waiting for the results from her culture to see what what it shows (and then put her on an antibiotic if needed).

Mackenzie turns 11 on Monday and for her birthday, I'm going to be sending an e-mail and posting to help her raise some money for the Cystic Fibrosis Foundation. We'll only be asking for $10 a person (of course more or less would be appreciated too). Please be on the lookout for the post because we'll need your help to spread the word.

LR Bound

As I previously posted, we were not able to go to the new clinic for Mackenzie's annual appointment this time. Dr. Warren needed to reschedule his appointments here for a date that Mackenzie will be at camp so we are back to our original appointment tomorrow. I'll post as soon as I can afterwards with an update, I'm praying for a great check-up.

Mackenzie's Check Up

Whew! What a whirlwind of a day. Left the house at 5:30 this morning to take Mackenzie to LR for a check-up and I'm home to post now. She had a great check-up...good numbers on her Pulmonary Function Test, clear lungs - over all good report. Dr. Warren was even okay that she didn't gain any weight but we are going to really work on that.

Also, they are going to start seeing patients in Lowell in June - HOORAY. Unfortunately, Mackenzie's next appointment is in July and it's her annual so we have to do that in Little Rock...But October will be great...30 minutes round trip instead of 7 hours! Of course I'd drive her to Oregon once a month if she needed to go!

Mackenzie’s Check Up

Jason and I (Peyton didn't want to miss school) took Mackenzie to Little Rock last week for a check-up at ACH. She's gained 2 pounds, her lungs sounded clear. There were a few small changes in her Pulmonary Function Test but Dr. Warren said it was nothing he was concerned about. She is home sick today but I think it's with this stuff Jason, Peyton and I have been passing around for two months. I called Dr.Warren's nurse to make sure nothing had grown on her culture and there was nothing alarming. They did prescribe an antibiotic and extra treatments for a little while.

Please cross your fingers that we will get to see Dr. Warren in Lowell pretty soon. They are trying to get it set up where we can have her check-ups there (except for her annual which will still have to be done in Little Rock). The delay is that they have to have the Lowell CF Care Center set up EXACTLY like in Little Rock, including training on infection control. I'm just happy that when it does happen, we'll still get to see Dr. Warren because he'll be coming to NWA once a month to see his patients in this area.

While we were at her appointment I took a picture of Mackenzie and Dr. Warren. Mackenzie said I wanted it for my blog but I really just wanted to make sure I had a picture of the two of them because he is such a big part of her life – and of the quality of life she's able to have. His knowledge of cystic fibrosis and the care and communication he has with Mackenzie is everything we want and need.

ACH Annual Visit

We took Mackenzie to ACH on Thursday for her annual check-up. We take her every three months but at her annual she gets x-rays, blood work, etc. and we get to visit with the cf team - nutritionist, respiratory therapist, social worker, etc.. It was a great visit! There were no changes from last year on her x-ray, all her labs were "normal", and her lungs sounded good (he heard something around her throat but just suggested she cough more to break it up). She also gained three pounds since March (thank you 600 calorie scandishakes), putting her closer to the 50% BMI that is our goal because they have found cf patients at 50% BMI or greater have better lung function. It was definitely a relief to have a good visit especially since tomorrow will mark one year since her hospital admittance.