Tomorrow marks a month since Ryan’s homecoming. I can’t believe how fast the month went. It started rather crazy until we were able to get a nurse seven nights a week and several days to help out with Ryan’s care. I still spend about 75 percent of my day before dinner time dealing with Ryan issues including phone calls, paperwork, therapy appointments, doctor appointments or cardiology clinic; not to mention actually caring for him.
I mentioned before he receives medication every two hours (except for between four and twelve on each side of the clock) adding up to 28 doses of meds a day.
He eats eight times a day via a feeding pump that runs his feeds over two hours with him eating every three hours (that means a one-hour break between each meal). I am working him down slowly to a more normal schedule. When he was home before, he was eating over 45 minutes, so that is my target. However, I must grow his stomach slowly so it will take some time to get there. (My real target is getting him to eat by mouth, but that is a different ball game.)
There are also different exercises I do with him as part of his physical therapy homework. We stretch out his neck and arms. He continues to be a tad tight probably due to his tortcollis, but is much better than he was a few months ago. I also work with him to reach for toys using both hands, bring toys to his mouth, work his legs and torso in the exersaucer, side-lying (rolling), grabbing, and I rub his scars with lotion to soften the tissue.
Then there is the speech therapy homework for his swallowing issues. I am supposed to stroke his cheeks, stroke his tongue, stimulate his tongue to move side-to-side, try to have him mimic mouth movements, and introduce the taste and texture of water and rice cereal (which he is getting the hang of as mentioned last week). The therapist who evaluated him this week said he is not swallowing properly but to continue giving him the water and cereal in tiny amounts every day to keep him interested in it. We will work with him to learn swallowing and gaining endurance in the next few weeks and then hopefully have a swallow study to see how well he is advancing. It would be so nice to get rid of his feeding tube, I’m just not sure what a realistic expectation is right now for the timing on that. We are taking it one day at a time – literally.
The other stimuli is language development and reception. He was sedated a long time and seems to understand a very limited vocabulary. I am supposed to be talking to him 24/7 and reading him books. Talking is not a problem and the girls and I read to him every day. I think he responded to the word ‘hand’ today. He tries to point to things with his feet (in response to having his hands tied down while he was vented) and today I said something like, “No, silly, get it with your hand.” He put his foot down and reached for the toy with his hand. I hate to read into it, but it seemed he knew what I meant. We’ll see if he continues to respond to it. He definitely knows his name and responded to the speech therapist saying hi by waving.
Ainsley and Natalie are doing great. The first two weeks home Natalie said on two occasions “I like it better with Ryan in the hospital. Then you have more time to play with me.” We are all adjusting though and with the nursing help, I am able to focus more on the girls and engage them again. We are back into a routine spending as many quiet days at home as possible. (Ryan goes to the doctor a lot – four times last week, three times the week before that, and twice this week) in addition to PT at home. We hope to add regular speech and OT soon. However, this new schedule is still way more relaxing (ha! I’m not sure that word applies here) than before and easier to deal with since we all live the same house.
The girls still play like they are doctors, nurses and now… therapists! Natalie came to me yesterday with her pad of paper in her hand and said something like, “What is your baby’s name?”
“Henry.” I said.
“Does he have a nickname?” she said.
“Yes. It’s Ryan.” I said.
“Oh yes, I have him on my list to see today. I will be your nurse and I’m going to help you today. Okay? And I will tell you what you have to do with him. He will need some stretching with his arms.”
“Oh!” she pauses noticing I’m pushing Ryan’s meds. “Go ahead and give him his meds. I don’t want to uh-sturb you. This is my assistant. She can’t talk. (whispers to Ainsley: ‘pretend you can’t talk and I talk for you’…. Ainsley whispers back, ‘okay’.) Ainsley does some popping noises with her mouth. “Her name is Elizabeth. That’s how she says her name. “The game goes on like this for quite some time.
Overall Ryan is doing remarkable. He did have an ear infection last week and a viral infection (confirmed today by blood work) this week, but they have both been manageable at home. I know some babies who must go to the hospital every time they get a fever. Tuesday when he had a 102 temp and was satting in the 60s I was afraid his docs would tell us to make a trip downtown. I didn’t even want to think about him going in-house again. But we made it through that day and the next and by last evening he was acting a bit more like himself. Yeah!
So here’s to one month – and hopefully many more – at home!
(c) 2016 Leighann Marquiss
Comments (9)
So glad to hear that u are enjoying time together as a family at home! And Ryan and the girls all seem to be doing so well…
I will continue to pray for all of u!
Love ya!
Richelle
So happy to read Ryan has been home for a month. He is so adorable and so smart I am sure you will be marking out those goals for Ryan as accomplished in no time =) Keep the good work mom!
You are amazing. You must be overwhelmed but your outlook is just awesome.
Continuing to pray for your family.
…and yet you still have time to blog, take showers??, get dressed, get the kids dressed, drive the kids to school, make meals, menu plan, change diapers, laundry, cleaning, (Do you iron?) ironing, socialize. Let’s see I am sure I am missing something..
All of the sudden I feel like a slacker!
YOU ARE DOING A GREAT JOB!!!
I nominate you for Super Wife/Mom of the Year!
Anyone second that? I am sure Henry would. 🙂
Wow time flies when your having fun!!! Thanking God that your little miracle boy is still home and that he will stay there
Wow, a month already! YAY!
PTL for your family! Yay! So glad to hear everyone adjusting and all doing well! Continuing to pray for you all! 🙂 <3
Wow, it is hard to believe Ryan has already been home one month! And he looks great. I am sure his big sisters entertain him daily and he loves it! You are ALL doing great.
Gail
Annapolis, MD
wow…a month.
seems like longer to me…
you guys are doing so great!
and we’re praying for you constantly!!!