Ready for bed, just missing my mama
Should have removed the price tag- but love this
Love this to, again sorry about price tag
Maybe I left it so Tony realizes how cheap they were. LOL
Good Evening from Cincinnati!
Wyatt is truly inspirational, there is so much I have learned and can write about him. We were blessed to have the family together this last weekend and Wyatt really perked up. I sort of felt like he was relieved he still had family outside of me. LOL
The boys were so loving and gentle toward him, they felt so bad for him. I was going to spend Saturday with the older boys at the museum thinking they needed some mom time and Noah said to me "Wyatt needs me, he is sick so where he goes I go. If he stays I stay." We are raising these boys right.
Joey insisted on sleeping with Wyatt and let me tell you Wyatt does not let anyone sleep with him other then his mama. But he allowed Joey to, and Joe really took care of him. It worked until about 3am and then we had to make a switch but it was nice to have 5 hours of sleep with my husband for the first time in 3 weeks.
Our sleep schedule is all off. My mission this week was to get back on schedule and let's just say Mission Failed. Wyatt does not fall asleep until nearly 11pm and then from 11-4pm he is restless, moaning, uncomfortable needing to be held.... At about 4or 5am he sleeps pretty good with just a few interruptions till 10am. He will NOT take a nap. I don't understand this because he is tired. I do know he can't get comfortable. He generally sleeps on his tummy and he can't. he can't sleep on his side and he gets tired of laying flat. On top of all that he has his feeding tubes all around him getting caught in his hands as he sleeps....
He is walking and running really well. He is even back to throwing fits when he doesn't get his way. He does not want to do much of anything other than watch DORA. I think in some ways this is good because he can't get hurt watching Dora but I also worry about him not getting out and being social and playing. I try to make him get out 2x a day to the playrooms but most of the time it is a struggle.
We were able to get out yesterday as the weather was sunny and 55 and they have a nice little playground. He enjoyed it but I didn't last long as everything was making me pretty nervous. The last thing we need is an injury.
Today we got back from a shuttle trip to Meijer which was nice to get out and within 10 minutes of our return Wyatt pulled out his NG feeding tube. Because of his airway this led us to the hospital where I knew we needed to go to radiology to have it placed, but plastics had to talk to ent, ent to pulmonology and then back to the ER. This took 3 hours of waiting in the ER where I did not want to be in fear of sickness. So I put Wyatt and I to work disinfecting the whole room, stroller and purelling our hands which he really enjoyed. Once we got to the right place it only took about 20 minutes, of which Wyatt was very upset.
It's funny as I was sitting with Wyatt in the ER, he wanted me to hold him close and we rocked and I sang. The whole time I was thinking about all this child is going through and now he is going to have to have this tube placed and he can't eat or drink and talking is difficult and everyday we are cleaning, turning, feeding, suctioning, medicating.... He hates every moment but no matter what fight he makes, at the end he just wants his mama. He grab holds of me and won't let me go. I am the one taking him to the hospital, Doctor, being his daily nurse, forcing him out to play, handing him off to surgeons, holding him down during x-rays and NG placements and all he wants is to love on his mommy. I have spent the last few weeks feeling horrible and helpless and trying to explain to him what's going on and why. He doesn't understand any of it but he understands unconditional LOVE more than anyone I know. He doesn't need explanations, excuses, reassurances nothing. He just looks at me and signs "I Love you" and reaches out to hold ME. Almost as if he feels bad for me. Is that not amazing. We could all learn from out children. I sure did today and many days. That was my lesson of the day.
God continues to Bless us in so many ways. Friends at home helping with after school pick ups, meals, dog watching. Friends in or around Cincinnati visiting, sending letters, gifts..., having help during the hardest weeks between my mom and husband.
I also had the privilege to speak to another mom who has a daughter who has gone through similar surgeries here in Cincinnati by the same Doctor. I spoke with her Sunday afternoon and one of the things she mentioned was that the Doctor had talked her into to doing the upper jaw right after the lower and she regretted it a bit. She wished she would have waited to see how the bottom jaw had settled. Sure enough on Monday I was posed with the same scenario, the Doctor had asked if we wanted him to use the same device and do the upper as he finished the lower. How DIVINE was it that I just had this conversation. Allowing me the confidence in saying no, let's wait. I am very concerned as of recent that we pulled the lower jaw out to far. He can no longer close his mouth, his upper teeth are so far back that I can't reach them. The further we pull the harder for the upper and lower to reconnect and for him to eat and drink without adjusting the upper. After laying in bed, praying and looking at Wyatt I have decided to stop turning the pins a few days early. I feel confidant in this decision and almost lead. I don't often go against the Doctor but for two days I am.
My last though that I have been struggling with is "pity". Wyatt looks like he is in pain and his face looks awful with his jaw pulled so forward and he is drooling like crazy. So we get these "awe" looks, or turn away, and even kids who will leave the playroom when Wyatt arrives. I am struggling with this as a mom. Wyatt doesn't even realize it's happening but I want to shout out he is just a 2 year old wanting to play. Then I started thinking about how often I may turn away without realizing it toward others for different reasons.
I hope you enjoy my pictures. I also added 2 pictures I bought today at Meijer on clearance that I can't wait to hang in the house. :)
Love from Cincinnati.
Melissa, Grandma and Wyatt
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