04 August 2008

Miss Malia ~ An Update ~

Hello Everyone!

I wanted to share the latest update that Malia's Mom posted tonight ~ Thanks again for all of your kind words, cards and prayers You are all very much appreciated!

Sorry for the delay in the update…it’s been a bit hectic around here this past week. We are starting the week in a much more relaxed state than we did last week which I am very happy to say J. It was definitely a stressful time trying to get Malia to eat and take her medication and basically do anything that we asked of her this whole week. We have a little relief now.Thursday, Kyle called our case Social Worker at the Oncology/Hematology clinic because we just did not know what to do. We were battling with her for what seemed like hours to just take a sip of water or juice and we needed some help. They told us to bring her in so they could give her IV fluids and check her blood chemistry to make sure she wasn’t dehydrated. My mom and I took her in and they did all her vitals, her blood work, and gave her fluids. All looked good except her weight – she lost more. Her total weight loss was now between 7.5 and 8 lbs. The Nutritionist said that they normally place an NG (Nasogastric) tube when a child has lost 5% – 10% of their body weight…Malia was already past that. So as we discussed that with the Nurse Clinician, the Nurse Practitioner, the Nutritionist, and the Social Worker, Malia finally realized that what we had been telling her about the nose “tubey” was real and we were not lying to her. She kept saying that she wanted to “pay attention at home”…meaning she wanted to eat at home and also said she was hungry and wanted to have lunch. So we ordered her lunch at the clinic and explained that she had to eat all of her lunch and continue to eat everything we gave her at home or she would have to have the tubey. She agreed but we were still a little unsure when we took her home because she still had to be coaxed to eat her lunch. To our delight, she was really trying to eat at home that night eating mashed up avocado with added coconut oil, chicken and cheese quesadilla, juice, etc. When we calculated what she had eaten, we discovered she was going to have to eat a lot more. The Nutritionist had said she needed to consume a minimum of 1400 calories to maintain her weight and if we wanted her to gain some weight back she’d have to consume 1500 – 1600 calories! We knew we had to get more in her because even if she was eating well at home all weekend long but had lost more weight when we went in to the clinic for her scheduled appointment on Monday, they were still going to place the tube. So we made a rule that every night she to drink a “teddy bear milk” (PediaSure). She didn’t want to and it took a long time but she did it like a trooper! Then 10 minutes later she vomited everything up. We felt HORRIBLE! I knew at that point that because her tummy had shrunk so much over the last couple of weeks, that she would not physically be able to consume the required amount of food to maintain her weight. Because we didn’t want to keep pressuring her to eat as much as she could all weekend long and end up having the tube placed anyway, we elected to go in on Friday and get her feeding tube.We explained to her on Friday morning what was going to happen and surprisingly she seemed to understand. She actually seemed a bit relieved because she understood that we didn’t want her to eat so much that she threw up but that she had to eat more than she was able to in order to not have the tubey. We explained that she still would have to take all of her medicines but Mommy and Daddy would not be hounding her all the time to eat and eat and eat. She could eat whatever she wanted, whenever she wanted. I think she really had a sigh of relief with that. Of course, the placing of the tube was traumatic for her (just like everything else has been L) but when we got home she was in great spirits. She even asked me to make her lunch! When I asked her what she wanted she was very specific – M&Ms, marshmallows, Jelly Bellies, and juice, all the 4 food groups J. When the pump was delivered, I told her that we’d have our own Wall-E (that’s what we called the IV pump and pole in the hospital). We also named the Pulse/Ox machine, which was blue, Eva (Wall-E’s girlfriend in the movie). When the pump arrived at home, she said that Wall-E had a small face – “like a baby”. Because the Kangaroo Joey pump is blue and small, we said it’s Wall-E and Eva’s daughter named Joey. She really liked that and now Joey is wearing a dress (a scarf that my best friend Amy had sent), some flowers, and a hat of all things. We even got a couple of pictures of Malia hugging her. We’ll make sure to upload some more pictures soon.So needless to say, it has been a crazy week for us but with Joey helping out with Malia’s nutrition, we no longer have to battle with her to eat. We still have struggles with the medicine and the shots but our stress level has definitely gone down. Of course, we’re still anxious about what is to come. The medications that she is being given for her therapy has some delayed side effects. We’ve already seen some (loss of appetite, constipation, etc.) but the lowered blood count which increases her chance for infections and complications, and hair loss is still just around the corner. The effects are also cumulative so this first round is over but we still have 3 more to go through and that, of course, is all unchartered waters for us. We are just taking this one day at a time and today is a good day J.We are still continuing to receive so many cards and messages which mean so much. There are no words that can accurately express the amount of gratitude and appreciation that we feel. We’ve got so many friends that are doing so much; making meals, sending cards, sending money, doing fundraisers – so much that it makes us catch our breath all the time. Not only has this experience with Malia changed us, but the abundance of support and love that we have received from all of you has changed us forever. Thank you!

1 comment:

Vicki Sullivan said...

Wow - it's hard to believe that little ones have to go through this. She's been in my prayers and I will continue to pray for her.