PT says Liam needs new inserts. They're different than the others and go up above the ankle. Liam's feet have gotten worse. Now both feet turn out and its the only way he walks now. He can only stand for seconds without support, then his poor feet and legs wobble and he falls. He's not letting it hold him back though. He's stubborn and a fighter, the very traits to why he survived CDH when he wasn't expected too. As of yesterday the walker has been a tool we can no longer use. He can climb out of it, making it too dangerous to use. Running after him all day to keep the pump close to him is exhausting but he sure loves it. He's a pro at climbing onto the couch and has just mastered climbing up onto the recliner than swivles. He's practically unstoppable. 3am this morning his Jtube clogged up and it took me 6 hours to get it unclogged. After which his pump malfunctioned and it took another 6 hours for them to get out to fix it. I had to use a large syringe to bolus feed formula into his stomach because you can't bolus feed into the intestines. I didn't want him to become dehydrated or loose weight. It was risky feeding him into his stomach because he vommits so much and aspirates. I was able to bolus 1 1/2 oz of formula into his stomach with him tollerating it. I was so relieved when they got the pump working and I started feeds normally. I vented his stomach to prevent the possibility of aspiration. I've been up since 3am and am exhausted. I thought for sure they wouldnt make it out today and I was going to have to bolus feed him all night long, every hour on the hour. Thank you Jesus that was NOT the case!! I feel so blessed for that!
That big syringe is how I was feeding Liam today. I had to push 1 1/2 oz. Could you imagine having to get up through the night every hour on the hour to do that? I couldn't!!
Cousin Kayla came by to visit and kept Liam entertained so that I could clean without having him under my feet.
I also got a special delivery of a much needed Pepsi from cousin's Laura and Josh. Thank you for that small miracle because I NEEDED that! It got me through the day without having to pull out my hair.
Although Liam took care of that for my and decided before bedtime that I needed my hair pulled and did his best to pull out a chunck.
What a turkey!
God has blessed us so much.
Even in my exhausted state I can recognize the small miracles and answered prayers that occured today and I am so very thankful for them.
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