This weekend was big for us. I didn’t feel pulled between doing fun things with the girls OR visiting Ryan. I didn’t feel guilty for resting at home while my son was spending his day alone downtown. Instead, I was enjoying a normal weekend at home doing laundry, grocery shopping, cleaning, playing with the girls, and being the primary caregiver for my son.
The biggest take away for me this weekend is – there is no price you can set on a night nurse that would convince me I don’t need one (my husband makes the money in our family so I’m not sure he would say the same thing)! Ryan is on almost continuous feeds (on 2.5 hours, off .5 hours, but with meds and time for reflux, he hardly gets a half hour break… mostly it’s 10 min. or so) and he gets meds around the clock. There is absolutely no way I would be able to function if I was up with him all night. I am someone who needs my rest. When the nurse gave report to me this morning and said, “He was fussy all night and slept only in half hour spurts” I immediately said a prayer of thanks under my breath; not for him being awake all night, but because I was hearing about it from someone else.
Ryan is generally happy. He only gets upset when he is experiencing reflux. It makes him cough and then gag on his food. He spits up about 50% of the time. I’m hoping we can get this worked out. Otherwise, he sits in his chair or swing or my lap or his sister’s lap and watches us live around him.
I worked with him to swallow using a spoon dipped in water. He opened his mouth really wide when I brought the spoon in ‘for a landing’ which is a big difference since the last time I fed him a week ago. His therapists really made a lot of progress in the last week. He swallowed the tiny amount of water so I made the amount bigger. He did okay with that too. The biggest problem is that he opens his mouth really wide and then doesn’t close it when the spoon lands on his tongue so the liquid spills out the sides of his mouth. I started applying pressure on his chin when I touched the spoon to his tongue and the last two tries he did a lot better at closing over it.
We also worked on him hitting a toy he has that spins and sings the alphabet and I’m trying to teach him high-five. I’ll let you know how that all goes, but for now, it’s going slowly.
Now we are back to the weekdays with school and work and doctor’s appointments. I have to take Ryan out today to get his electrolytes checked and we have several appointments this week and next. That reminds me, I better go call the oxygen company.
What did you do this weekend?
(c) 2016 Leighann Marquiss
Comments (14)
Leighann,
I am so happy that Ryan is home with you all. I have been praying so hard for the little guy and I will continue. You are doing such a great job and even though I don’t know you, I am proud of you…you really set a great example as a christian wife and mother 🙂
your life seems very challenging. God bless you.
Leighann I am so glad that Ryan is home and glad it makes some things easier for you. I know it will be a lot of work for you and I pray you will hold up well. It is good that you have a night nurse…or any help that you can get.
I am still praying for you and the family…and for Ryan, and I just want to remind you that the Lord’s mercies are new every morning. Great is His Faithfulness!
Keep on trusting Him…He loves you all.
Linda @ Truthful Tidbits
Praise the Lord that Ryan is home and your a complete family! God is good! cont to pray for y’all and that Ryan conts to improve.
So happy that you are all home!
The spitting up is no fun.
Several moms that have special needs kids have something called the napnanny to help the child’s head be elevated a bit better. The people that have them love them. I found out just recently and Brayden was already to big for it.
http://napnanny.com/the_napnanny.html
I love that your had a normal weekend & didn’t feel pulled. What a precious gift from God for you! Praising the Lord for your night nurse – and praying that being home makes Ryan heal 100 times faster and begin to fully live the life God has for him!
So happy to hear you have a night nurse. We prayed last night you would get rest. What a blessing!!
GLad your weekend was busy but “normal”.
Dad came up this weekend and said he saw ryan. Said he was a happy little kid. Can’t wait to see him myself!
Love ya and continue to pray for you.
Happy that Ryan is home and happy that you have a night-nurse! Is the nurse at your house during the day or just at night?
~Wendy
Congrats on taking Ryan home. He’s doing so great and I’m so happy for you. I read your blog every day.
I’m one of those people who can’t function without sleep as well, so I’m glad you have a night nurse.
Reflux is caused by food allergies a lot of the time. Do you think maybe he’s reacting to dairy (most common culprit) in your diet?
Leighann,
I’m glad to hear all of you are together and that you had a normal weekend! I prayed all weekend and pray daily for you guys and thankful that you have a night nurse to help out with the feedings and meds. Keep looking up and Keep smiling 🙂
That’s so great that Ryan is home with you all!! I’ll continue to keep you all and his doctors in my prayers.
Answer to your question:
Prayed for you, that your time at home, together, would be blessed.
And then, the usual stuff in my own home and family.
I’m really happy for you that that there is a night nurse since I am someone who needs her rest to be civilized let alone function and can only imagine how important that is with 3 kiddos and all the extra with Ryan.
Continued blessings in your home all together as a family.
So glad to hear that your little Ryan is home with you all. I really do not know you but am being to know more about your family and Ryans condition as I continue to read about you all. I am sending my prayers for your sweet boy.
What is the name of the night nurse so we can pray for her?