Thursday, July 25, 2013

Summer Cold


Genesis 6:8 But Noah found favor in the eyes of the Lord.








Yeah, Noah is fighting a summer cold. Sadly, a simple cold is not very simple in the case of our Noah. Again, he is unable to tolerate his night feeds and he simply doesn't care to eat AT ALL during the day.

When tube feeding him, I have to be on high alert since he will more than likely vomit most if not all of what was tube fed. The bolus feeds, every three hours ,are a must and making sure to keep him hydrated while the bug passes is the number one challenge.

The Dr. visit went well, except  when having to restrain him for the nose and throat swabs. That's always a mess!!!! Thank God, all was well and its nothing more than a cold which will disrupt our "normal" routine for the next, at least, a week.

THen the bolus feed in the waiting area. I never know exactly how to handle those. It's like breast feeding. You don't want the stares. You try to cover it up and not attract attention. I need extra hands to help with all of it and its done quickly to avoid Noah from wiggling too much. You can always tell other people are curious and at times they don't know if too look or not to look. Most of them will glance a couple of times and go on pretending as of its something very common. I can still take notice of their curious thinking. Of course, if I saw a baby being fed through his stomach I'd have many questions too. My biggest concern is protecting my child from negative reactions which I'm happy to announce has never happened.

I asked a simple question today.

Seeing how Noah's weight is still an issue and our little monster has become extremely active, I asked if I should avoid all the running around outside during play time to stop the calorie burn from happening.

I NEED TO FATTEN UP THIS BOY!

Dr. so vibrantly replied, "No, let him run around".

It's so nice to hear that our child is beating some odds. As of now, according to the Dr. and the numerous labs that have been done on him, he shouldn't be so mobile. He is a miracle!

He went on to praise my child for shocking the team of Drs.

I was happy to hear that.

I was disheartened to hear the next part.

"You never know until when he'll be doing this and then your concerns will not be about how active he is".

It's hard to take that like  grain  a salt. Reality is, our reality is hard to take in.

In my home, our day to day is as ordinary as the next. It's out of this walls that reality hits.



He's small; he has a g tube; he has a disease. His kidney is failing. He will need a new one someday and we rebuke that in the name of Jesus!

As of now, I rest in the strength of Lord and pray for my child's well being. I ask you to do the same.














Wednesday, July 10, 2013

Isaiah 12 : 2 Surely God is my salvation; I will trust and not be afraid. The Lord, the Lord himself, is my strength and my defense[a]; he has become my salvation.” 5. Sing to the Lord, for he has done glorious things; let this be known to all the world.




Great news! Although the VCUG was extremely unpleasant, the results were awesome..!!!  It turns out the re implantation of the ureter performed 6 months ago was a success!!!!  Noah no longer has reflux. Lord, in you we rest.
          As of now, the urological issues Noah has battled since day one are cleared . The ureter has been re implanted in the bladder, the urine is flowing to the bladder, and the bladder is expanding. On top of that, two medications have been discontinued. Greater news is the  torturous VCUGs and urodynamic studies are no longer necessary, as long as things continue going well.



Summer has turned out to be awesome!!! Our summer egg hunt was a blast!

Our monkeys are doing great and Noah is approaching his terrible two's. The kidney disease is stabilized and we're waiting to see more progress.
His appetite is still very poor and still depends on g tube for most of his feeds,  last weigh in he made it to 5% percentile on the growth chart, and his kidney is working at 65 %.

We continue resting in the strength of the Lord and trusting him in all things.

Continued prayers requested for our amazing Noah.