So the good news is Daylon has been meeting his nutritional goals everyday this last week!! Yay! His weight is up to 11.45kg, so it's slow but steady. :) We are so grateful to have this worry begin to peel away. He's still not interested in anything by spoon but we're all about baby steps! We are also so grateful to have so many wonderful people praying for and thinking of Daylon everyday through this trial.
I wrote the paragraph above a few days ago.
Daylon continues to eat through his squeeze bottles and I'm happy to announce another break through!
Thursday night we were celebrating a birthday at home and I decided to set some cake on Daylon highchair tray to buy some time to serve up the kids a dish while Daylon "colored" with the frosting on his tray. About two minutes later I turn around and see this....
Holy smokes! We all just sat there laughing at this surprising little miracle. You know, it would be cake that finally break this stubborn guy. He is his mother's son. :) The cake was just the beginning. At almost every meal he will feed himself a bite or two of food that we on his tray. The trick is, he HAS TO do it himself or else he refuses. I think after the smoothies of avocado, butter and french vanilla flavored Suplena (kidney failure milk) he had lost all interest in eating food outside the realm of his formula. Whatever it was, I'm hoping that this is where he can finally lose the caption on the front page of his chart, "suffers from malnutrition".
Outside of eating, Daylon has had a really rough week and a half (resulting in a mama with no time to blog). The skin on his face and chest has been tearing like tissue paper. Although this may seem like a step back, the good news is that the sores are scabbing up fairly quickly. The bad news is that once they the scab, they itch and he scratches. Some of the sores are pretty deep and are a challenge to keep from becoming infected. A week ago Friday we went to clinic and Dr. Buchbinder and I talked for a while and decided that Daylon's hair needed to be cut off. The sores on the top of his head (on his scalp) are really deep and oozing quite a bit. The dampness from the puss (sorry, I think that's such a gross word) made his hair on the parameter of the open sores lay down and stick over the top of the sore. That area wasn't really able to heal up because of it and increased his risk of infections. The increasing number of bald spots helped to make the decision easier. :) I couldn't use an electric razor to shave his head so he's not completely bald but have such short hair certainly is helping the healing process.
Daylon has been suffering with his eyes. Since the last post, just wants to be held and sung to ALL. DAY. LONG. With four other kids to tend to, it's been a real blessing to be staying with my parents on weeks like this week. Dialysis has been a full on nightmare at times. He's been too miserable to sit through 4 hours of sitting still. By the time we leave he has blood running into his eyes and fleshy patches on his forehead and chest. Two days ago he started opening his eyes more regularly and playing again. As long as we're close (like within a couple feet) he's okay to play for short periods of time throughout the day.
One cool bit of fun we had earlier this week is that Erin, Daylon's nurse from Minnesota came down for a visit! It was SO fun to see her! She is such a sweetheart! She is absolutely amazing with not just Daylon but all the kids. The kids remembered her so they wasted no time chatting it up and playing around. We are so excited to see her again this Summer!
|He's awake, he just couldn't open his eyes on the day she visited.|
Daylon is done with dialysis!!!
We went in today so he could be dialyzed and the doctor was there waiting. The three Nephrologists feel that Daylon is no needs dialysis to sustain life. We will visit the clinic weekly for labs and if after a couple of months his creatinine and BUN have no increased than his Hickmann line will be removed! I can't WAIT to get that thing off him! I am overjoyed right now! I can't even tell you what a huge blessing this is! It has been so hard to go through the transplant and watch his disease improve but have the affects of the chemo ruin his life. It felt like he was suffering so much just to trade one problem for several others. It just feels like this ginormous weight has been lifted off our shoulders. As the doctor talked my eyes filled with tears of happiness that this day has finally come. His BUN and Creatinine are still elevated but his kidneys will probably never perform at 100% after the months of trauma that they've been through. He will still have to stay on his special renal diet (low minerals, especially potassium, and protein) for now, but some of his limitations may be lifted after time. I know that he has been blessed to over come obstacle after obstacle because he has so many wonderful people praying for him. Please continue to pray that his labs will stay down and he remain off dialysis.
We are thankful for all of your support! Go Daylon!
On Sat. my mother-in-law took our three girls and my niece Aleyna to a Disney Princess Tea Party in Norco. They had SUCH a blast! Check out these cuties!