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Lukes surgery

sending much love to all!! Sorry for any typos using my phone to update. Luke has is surgery yesterday and we are still inpatient at JHH but he is doing wonderful. He had a really rough day yesterday post op. Had to stop on transport up because he wouldn’t stop throwing up. 

Celide came to our room to bring us his metabolic menu while in patient. She brought him a few PKU friendly snacks. We also saw our last geneticist dr Hamosh who was a breath of fresh air in all the mayhem. Luke was sleeping and we talked a lot. 

Mall of his siblings (the four who have also been through Chiari surgery) were here to see him as well as his poppy. Our friend Monica is here with her little boy who is battling a rare form of cancer. She came down to sit with me earlier as her husband was here as well. I love Monica. Please say extra prayers for her little boy and her strength as well. 

Today luke is doing so good. It’s amazing. He finally got his catheter out he’s drinking his formula and eating. He was up and in chair for a few hours. He is still on some iv meds but most are oral. he was able to FaceTime his brother in Afghanistan and his oldest brother home recuperating from his surgery. 

We have had many trying times lately but the power of prayer has shown how great HE is!! I would post a pic of Luke here but I’m having trouble uploading it on my phone. My apologies. 

Much love to all. Xo

Lukes surgery

sending much love to all!! Sorry for any typos using my phone to update. Luke has is surgery yesterday and we are still inpatient at JHH but he is doing wonderful. He had a really rough day yesterday post op. Had to stop on transport up because he wouldn’t stop throwing up. 

Celide came to our room to bring us his metabolic menu while in patient. She brought him a few PKU friendly snacks. We also saw our last geneticist dr Hamosh who was a breath of fresh air in all the mayhem. Luke was sleeping and we talked a lot. 

Mall of his siblings (the four who have also been through Chiari surgery) were here to see him as well as his poppy. Our friend Monica is here with her little boy who is battling a rare form of cancer. She came down to sit with me earlier as her husband was here as well. I love Monica. Please say extra prayers for her little boy and her strength as well. 

Today luke is doing so good. It’s amazing. He finally got his catheter out he’s drinking his formula and eating. He was up and in chair for a few hours. He is still on some iv meds but most are oral. he was able to FaceTime his brother in Afghanistan and his oldest brother home recuperating from his surgery. 

We have had many trying times lately but the power of prayer has shown how great HE is!! I would post a pic of Luke here but I’m having trouble uploading it on my phone. My apologies. 

Much love to all. Xo

Michael and Luke

Luke is doing ok a lot of headaches. Kind of worrying me and his apnea episodes are increasing daily. His pku levels were abnormally high which is very concerning. We had preop Wednesday and this mama is getting nervous. My life has been spiraling out of control lately and it scares me. I haven’t been able to work and with surgery coming in a few short days I’ll be out a while. Christmas isn’t supposed to be a worry but honestly it’s freaking me out. The older children totally get it but the three youngest not quite. And it stinks. Especially when we’ve always prided on standing on our own two feet. Sorry just venting. 

Today we got back into the swing of schoolwork as the last ten days with Michaels accident it was put on the back burner. Luke did bible and science lessons today. Maddie chose bible and language. They seem to learn better with two or three subjects a day then all the curriculum at once. It’s going well though. 

Here is my update I posted on Facebook for Michael tonight. Thank you again for all your love and support :

 

Michael had a bit of a rough day ????he had a few “near fainting” spells and said several times through the day he felt funny. He had an appt with pcp then they sent him for labs to check his blood count. His blood pressure was low 100/53 when PT was here. Was a little better at drs. We went to tow yard after appts and boy did that rip me apart. Whew. My son is so lucky to be alive. Tomorrow he celebrates his 26th birthday and I thank our Father in Heaven for allowing him to see it. Thank you Jory and Mary for making him smile and pizza for dinner. Thank you Grandmom  Elizabeth and Eddie for stopping by and thank you Russell for your “manpower”???? today.      Nikki and Michael are all snuggled in recliners enjoying each other’s company but now fast asleep. Thank you again from the bottom of MY heart for all the love support and prayers through this most difficult journey. I will update on Michael tomorrow and hopefully have good blood results. Much love. Xoxo

Michael

thank you for the prayers it has been a horrible week and in 12 days Luke has his brain surgery. i just got home have been at shock trauma since tuesday. Michael is making huge strides in the right direction. He had a very extensive surgery to repair and rebuild his leg. His lung is still partially collapsed but he is with us talking and even cracked a few jokes. Luke and Maddie have been with me there for the past two days. They were so good. Luke cried tonight he did not want to leave Michael broke my heart. 

But when we got home he had a package from coles. He was so happy. You all made my baby smile and he is going to sleep feeling super loved. He has planned his day of building his new LEGO tomorrow. He loved it so much!!

i love all of you. Thank you so much. xoxo