Saturday, March 31, 2012

Lucky to be where we are...

Today I read an article in a Polish newspaper of a little girl with HLHS and I realized how lucky we are to be in the United States during Jasiu's battle with HLHS. For one, her mom did not get a prenatal diagnosis (though this still happens in the US it's much more prevalent in Poland), second her mom had to literally BEG the doctors to go the 3 stage surgery way and was even told bluntly 'Why, she won't make it anyways', and third she is now 18 months old (post 2 surgeries) and though she's doing well they still are seeking funds/approval for a pulseoximeter machine. I can't imagine how that woman survived the interstage without a pulse ox. Though I had to learn how to "read" John on my own I can't imagine going through that without a pulse ox. Just before Jasiu's first birthday I got a letter from our insurance company that the pulse ox we were renting is now ours since the insurance paid enough rental fees to own it, so we are proud owners of a Masimo hospital grade pulse ox. It is bulky but it is also accurate and it gives me a piece of mind. In the first year I have used it religiously, we still sporadically use it but that's not the point.

We are also lucky to be at this stage in the battle because frankly I'm not sure how much more my mom, mother in law, husband and I could handle with the feeding difficulties Jasiu had. Jasiu is now an avid eater ! He LOVES food and still likes his milk. He's fascinated when he watches food cooking/ water boiling on the stove (safely from his high chair mostly) and also by the microwave. He prefers home cooking like made soup and lately since we had amazing weather e already tired food prepared off of the grill and loves that too, he even tried some finely finely mashed up steak  and chicken. He still eats his oatmeal and baby foods (vegetables and fruits) I prepare in the steamer/blender. It really puts tears in my eyes just thinking about it. He is also doing wonderfully with feeding himself.. he enjoys ladyfingers wafers, chewable chips, yogurt melts, etc... We also found a sippy cup that he Loves. We literally have almost every sippy cup/straw cup (spill proof) on the market. it's a sippy cup with a soft flip straw and I love it because it's spill proof. We have had some interesting cups and he either doesn't  have enough strength to suck it through the spill proof valve, the straw is too soft or too hard or it spills because it;s too soft.. ohh it was a battle itself to search for one he likes. It was also by accident that we found it for him, the particular cup he loves was bought for Emily (it's Kai Lin one pink and one darker blue/purple) and Jasiu loves the PINK one :) ohh well at least he is drinking on his own.

We are also lucky to be in an area where we have so much support and not just from the on line community but from the hospital and others who live relatively close to where we live. Since we are where we are on this journey I feel like I can finally help others and give support and hope for the future. I had the pleasure of meeting little Kubus and his family last weekend. He has HLHS like Jasiu and is also having feeding difficulties. I would like our support group and payer warriors to say an extra prayer for Kubus that he starts eating by mouth soon because his mommy and daddy can really use the break. He didn't have such an easy recovery from the Glenn and an infection brought all of his eating progress back to zero, but I have full faith and pray for him and progress. Go Kubus Go !!!
We are also enjoying life which is as normal as I never thought I would have even been able to imagine. We have a beautiful spring (in March in Chicago) and are enjoying ever last minute of it. Here are a few pics of the kids enjoying the weather and the outdoors.

No comments:

Post a Comment