Tristan slept really good last night until 2:00 am when he woke up fussy and cried until 6:00 am. We tried everything to console him and nothing was working so we took turns holding him until he finally fell asleep. We are in the process of figuring out if this is the reflux, his formula or possibly colic.
We had the appt. with the speech therapist at 10:00 am this morning. First, let me say, she was just as sweet and optimistic as the cardiologist - another person the Lord put in our path for Tristan's medical care. Second, she talked to us for awhile about Tristan and then she started teaching us things we needed to do daily like swaddling him in the receiving blankets so he feels secure, vibration in his bouncy seat, every 3 hrs. during his feed time putting drops of formula on the pacifier to try and teach him to suck and swallow the formula, watching the "sensors" in his environment like having him with us at the dinner table to smell the foods, watching sounds around him like TV or other noises too loud(this is going to be interesting with a 2 yr. old in the house) or the lighting - when it's night time keeping the lights out and day time the lights on, okay mommy is completely at fault here, I keep the nightstand light on ALL night to make sure he doesn't turn colors so this is something I'll definitely have to pray about. It was a very informative appt. and obviously we have lots of homework!!! And, tomorrow we have an appt. with the Nutritionist and we are looking forward to this appt as it will help assist our pediatrician and other specialists with Tristan's calorie intake which will ultimately help him gain weight.
Trayc was able to take Tanner to choir tonight, Tanner was so excited because the 5th grade choir was singing in church tonight and he loves to do that, hey 2 Wednesday nights in a row we're slowly getting back to normal!
Please pray for Tristan's strength, please pray that the 2 hearts meds work, please pray for us as we start working with Tristan to learn to swallow, please pray that MOMMY can keep the lights off at night time and please pray for us as we face another new day tomorrow.
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12 comments:
I am so thankful that God has blessed you with the specialists that you are now seeing. You are so right, the more people you are able to see the more witnessing you can do. Looks like God intends for your nets to be full!!!!! Keep fishing!
Two of my daughters are speech therapists so we are keenly interested in the advice you received as well as the progress that Tristan makes in his swallowing.
God bless you as you continue on this journey and God bless you for sharing with us.
Home Depot & Lowes have "sliders" that you can (VERY) easily attach to the power cord of most lamps ~ this would enable you to keep the lights a little lower - but still just enough to see his sweet face ;) All our lamps have this addition so that I could keep the lights off & yet see to feed Noodle when she was that tiny.
Praying that he keeps doing so well!
Hello Hostetter Family~
I have been reading your story for a couple of days now. I was attracted to it because Tristan shares my son's name: Asher, which is not very common. Your story is very compelling and I find myself checking in multiple times a day :) I too have a special needs child (though not T18 and not Asher), so I understand some of the emotions you've had to live with.
I had an idea for the "light" problem you're having. A touch lamp. We've used them, and the ones we've had had 3 brightness settings, with the first one being very dim and hardly noticeable, yet enough to see what you need to. The other good thing about a touch lamp is the fact that you can turn them on very quickly. No fumbling for the switch--just "smack" it if you need to! So if for some reason you're concerned about the baby, just hit the light, and you'll be able to see what's up without telling his system it's morning time :)
Just an idea, but I felt I had to come out of "lurking" to share it!
Looking forward to reading about more good days....
praying in MD!
I am vey thankful for your family that Tristan is still here and making great headway for you. He truly is a miracle! Fisher Price makes a monitor that has a touch light on the base, it has a very soft glow, and you can just turn it on when you need to, or put it on the other side of the room to have small light in the room for you. I bought one for my best friend, and her t-18 daughter, because she wouldn't sleep without lights on after she came home from the nicu. Worked great, and you can always have light. I will keep praying for you and your beautiful family, and for all the great people that God keeps sending into your lives to help Tristan.
Cassidy in Indiana
AMEN!!! Praise God for the opportunity to spend this time with Tristan and for all of the specialists He has placed in your life. It is truly amazing to think that your precious little baby boy can be such an effective witnessing tool. Someone once said to me that babies are "ice-breakers" and your baby is no exception. Children tug at all of our heartstrings and it is so neat to see God using that fact to open up opportunities to share your faith. God is so good!
We are so thankful for all your blessing and strengh that God is giving you, for you to be able to take care of Tristan and starting a normal life. Thank you for taking the time to share with us, we really appreciate it!
We will keep praying!!!!
The Magana family
St. Augustine, Fl
What a sweet family you have. I love reading about your family and how God is working and how you acknowledge Him in everything. What a blessing you are!!
Delurking just to say I'm feeling such joy for your precious family tonight and I am praying for you all daily!
Yvette,
Thanking you for all your prayers and messages. I love you and am continuing to pray for you and your time with Tristan. I am so glad God is putting good specialist in your path. He is with you....you are to do what you can daily to make the most of it. We are not promised any time, it teaches us to do our best daily!. Praying for you daily!!
With love,
Kim
Praying for your little warrior and his precious momma tonight. ;)
Always amazed by what God is doing in your lives! I admire you and think of and pray for you many times a day. Thank you for sharing your family with us!
Love,
Michelle
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