Hi there, its been a while since I have posted an update about our little one year old, Jonah. Jonah has had a good week so far. He made great progress on Wednesday (his first bday) eating a little cereal, Bmilk and apples. It is a big deal that he tolerated it well, since his oral aversions tend to get in his way, which is totally common for kidney kids/babies. Small steps baby boy, small steps. Well, I will try and make this short and to the point without giving too much detail and boring you all with medical talk. So essentially, Jonah has had issues with his left hand and has increased tone in his elbow and left hand. We noticed a change, a few days after his last surgery to remove his broviac and place his port. Well, we finally saw a neurologist on Tuesday, and well.... she thinks he probably had a stroke during his last surgery. I wont get into details on FB why, but know he will be getting an MRI of his brain and an MRA (check his blood vessels) Wednesday of next week. Once she gets the results, many things could happen. We could get referred to cardiologist for an echo to make sure his heart is ok, she could start him on a daily regimen of aspirin, he could go see a hematologist, or nothing comes of the tests and we move on. Either way, Rick and I have learned throughout this journey, that getting our panties in a wad doesnt help anyone. And really, all we can do is ride the waves. Jonah has made it clear that he does not follow the rules and likes to be different, and that is ok. We will go with the flow and ride those waves with him... and who knows, we might end up in the Caribbean or somewhere with clear blue water and white sand. We are getting tired of muddy water. Today he had his 12 month well check and we discussed his overall health and day to day activities and she is happy with Jonah and his progression. Yay!!!!! Well, i will post a cute little picture of Jonah boo...our one year old... I still cant believe it. This time last year, he was getting baptized in the NICU and unsure of his time on earth. The words uttered by the neonatologist, if he makes it through the night, he will be transferred to Dell Childrens Hospital at 8am tomorrow am. Hugged me tight and had tears in her eyes. Now look at him today. BABY BOY is thriving and growing... everyday is a challenge, but we always look to GOD and thank him... Boy i wish i could hug him now and say THANK YOU LORD, THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!!! Thank you ALL for your support and LOVE... Your donations and well wishes mean so much to us. Our friends and family from Laredo will be posting updates on the November fundraiser..... Thank you again for everything!!! Keep sharing Jonahs story. He is a testimony of GODS promise that miracles do happen.
Posted on: Thu, 30 Oct 2014 23:48:46 +0000
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