March 19, 2011 at 8:42 pm 3 comments

This was a long week. Gabe was sick, then Nate who never gets sick was sick, and then Max. Just a virus going around nothing major but made for a long week. On Friday Gabe had his 5 year check up. It turns out he has dropped off of the bottom of the charts for weight and his height is hovering around the 5th%. My pediatrician is concerned about his weight. She feels the growth hormone will not necessarily help with his weight. The thing is that he eats. He eats well and eats healthy foods. I just don’t get it. I know I need to be more diligent about adding healthy fats to his foods. Today I made him a smoothy with almond milk and added olive oil to it. I’m just frustrated because we ruled out celiac and malabsorption. So is it just chronic kidney disease? Where do we go from here? Isn’t having ARPKD enough without having to worry about his weight too. I feel like ARPKD is enough but it brings with it a whole big list of other issues. Mainly there is the CHF we have to worry about. And with that there comes the platelet count, the enlarged spleen, varices, cholangitis…… Then separate from ARPKD/CHF but mostly because of it we have the high blood pressure, anemia, growth issues, the bladder issues (although not necessarily related but I think so), large painful kidneys, asthma (also possibly related and possibly not), lots of urine, and on and on.  Plus just the common childhood things that also are not necessarily related but in my opinion are worse because of the ARPKD.  Just a long week and lots of emotions for me. I think with Gabe’s birthday and the memories from his birth and my baby growing up and his appointment Friday and the boys being sick I am just emotional and tired and frustrated. But as usual also grateful for my beautiful boys and what we do have.


Entry filed under: Uncategorized.

Monday Memories The System….Again

3 Comments Add your own

  • 1. Julia Roberts  |  March 23, 2011 at 5:41 pm

    I’m sorry hun. It IS overwhelming on good days and then you throw in a few kids with a regular bug and well, it’s tiring.

    Did I ever tell you that Gage was 7 and weighed 42 lbs? That was when he was evaluated for his transplant and started dialysis. The nutritionist instructed FATTY foods. Not healthy but foods with lots of fat. Poptarts, doughnuts, mcdonald’s. We needed to get some weight on him and it did help. It helped him be a little healthier. Problem was he wasn’t eating enough though. Don’t know if it’s an options to really get some fat in his diet, but there you go.

  • 2. jtzona  |  March 29, 2011 at 1:40 pm

    So sad that Gabe was under the weather. We will be thinking about Gabe and praying that he will add some weight in his own way.

  • 3. Naomi  |  May 9, 2011 at 12:01 pm

    Thinking of you in your times of stress x


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