Elijah has been doing so great with the restraints, but as he has returned to himself, the more frustrated he is that he can do what he wants with his hands (which is shove them in his mouth or scratch his itchy head). The last few days he has started "fighting" more when we put the braces back on after brief arm exercising.
It is actually pretty funny right now because he gets super excited when he can get his hands on something despite his braces. We of course put toys in his hands, but his favorite things to grab now include faces (particularly lips), his burp cloths (to try to get up to his mouth), books, and my hair (ouch).
He is mostly a pro at eating from the new bottles now. A lot does end up coming out of his mouth, but we have improved over the last two weeks. He loves talking through his feedings. His new thing is a squealing scream which is hilarious and loud. If you want to hear it, text me and I will send you a video. I can't post videos from my phone on here.
We go back to NY on Wednesday to get his nasal stents. I am dreading the traveling and the nasal stents but super excited to see the NYU team and the MyFace foundation staff. I have missed them. I am nervous about the nasal stents because his nose is so sensitive from the internal stitches that will take months to dissolve. He hates when anything even touches his nose, let alone goes into his nose. We have had to clean out clogged nostrils with qtips and nasal aspirators and it has not been fun. I can't imagine how fun putting nasal stents in will be.
His skin is SO much better. We have completely changed his bed situation and he is now sleeping in his crib. It has taken him some time to get used to, but since he can't rub his cheeks much on the sides like he could in the other small bed, the irritation has gone way down. Plus a few days of hydrocortisone, lots if lotion, and Benadryl at night. He is still itchy but the skin is much better. Not looking forward to taping his cheeks again with nasal stents, but hopefully we have reduced whatever he was allergic to in his bedding.
I need to take a better picture of his crib with his beautiful new lion quilt from Nate's Aunt Nancy and our safari animal mobile (animals direct from Kenya from my boss Chris and mobile put together by my friend Marisa). It's old school in the sense that it doesn't spin on its own or play music but it matches the room so well and Elijah loves looking at it.
He is working on sitting. Sort of.
He kind of just slowly leans forward until almost touching his face to the floor.
We will continue taping above his lip for a few more weeks. This tape is super easy! It does fall off every few days from getting saturated with milk. So here are a few pictures without the tape so you can see the scar so far.
I have read from other moms that the scar gets worse before it gets better and that it may be pretty red for 6 months to a year.
There is a lot of talk and worry about scars in the cleft moms Facebook group. Myself included. But it makes me wonder why we are so afraid to show our scars? I know as a mom, I am mostly wanting him to look as "normal" ( I hate that word) as possible so that he won't be self conscious about it and so others won't pick on him. But 1) I can't control that and must trust God to guard Elijah from elevating physical beauty too much and from potential teasing from others and 2) isn't a scar a beautiful thing? Ok, I know that sounds crazy. But apart from my anxiety as recently mentioned, his scar is sign that where something was once separated and "broken", it is now mended and healed. It is like those stone pillars that people in the Old Testament used to put up to remind them of God's faithfulness and rescue of them. So when they would forget, they would look upon them and remember:
God did this in the past out of his goodness, mercy, and love. He will rescue me again. He will heal me again. He is faithful.
I hope, on one hand, that Elijah's scar completely fades with time. And I will put sunscreen on it and, if the doctor recommends it, massage it. But on the other hand, if it doesn't fade completely, I hope that it will give Elijah peace in his heart that God is a healer, physically, but primarily the healer of our broken souls which were once separated from him; that it will remind Elijah that God has had his hand over him and watched over him through his surgeries; that God is faithful and his marvelous works are to be remembered and he is to be praised.
I will give thanks to the Lord with my whole heart; I will recount all of your wonderful deeds. I will be glad and exult in you; I will sing praise to your name, O Most High. (Psalm 9:1, 2 ESV)
I actually thought I was going to talk about suffering in this post. Many around me are suffering and are in the valley of deep sorrow right now. Many, the deepest sorrows of death. And in some ways it feels so wrong to talk about our daily and minor struggles with Elijah's cleft stuff. For those of you reading who are in the depths of despair, who are weary and not sure how much longer you can carry your burden, I leave you with this verse and pray that it reaches you to your core. It may feel like God has turned away from you. But have hope:
When the righteous cry for help, the Lord hears and delivers them out of all their troubles. The Lord is near to the brokenhearted and saves the crushed in spirit. (Psalm 34:17, 18 ESV)
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