Feb. 26
Night Post:
Thankful things:
-Liam drank from a sippy cup all 3 times we fed him today (we did it twice on our own since he only gets therapies in the morning on weekends).
-He fed himself cherios, cheetoh puff things, bananas, and pancakes. He loves to eat now...excited to see what his weekday therapists think they will be sooo excited (and jealous that they missed this weekend!)
-Liam sat (with some assistance for balance) between the two therapists on his mat and played with toys and jabbered away...usually this makes him scream.
-More words today from Mr. Liam: "so funny" "Mine" "ok" "thanks" "all done" there were a few more that I can't remember off the top of my head.
-When he almost drank all his water (thickened water) from his sippy cup, he shook it to see if there was anything left, then he tried to take the lid off to drink it without the sippy part on it (he used to do this before and used to 'get in trouble' for it:) more of our Liam coming out)
-In the bath he played with one of his squirt whale toys...he used to put it on his stomach and try to make a 'farting' noise--then he would laugh. That's exactly what he tried to do today.
Prayer Request:
-As good as those things were...today was also a terrible day...he would have moments of being happy and playing-and then the rest of the time was screaming, crying, or fussing. He only slept till three in the morning last night and only took about an 1 1/2 nap this morning...please pray for a restful nights sleep for him tonight. He seemed to be having withdrawl symptoms and also gas (upset tummy).
-Liam is having symptoms of a cold. Please pray against that. If he gets sick he has to go back on prednisone until he is better (long story about the medicine history behind that).
-Liam is extremely frusterated the more'awake' he is becoming. He is trying to move and realizing he can't--which is going to be a great motiviator for therapy but is soo hard to watch and I wish he didn't have to go through this. Plus, he can't see or hear.
-PLEASE PRAY FOR A MIRACLE FOR HIS EYES AND EARS. WE KNOW OUR GOD CAN DO THE IMPOSSIBLE.
It was a little hard to stay 'focused' today with all the fussing going on in Liam's room today. I am trying to do the same today as yesterday and focus on all the good things God has done for us. Believing that he can heal our boy and that he is not done yet! Thank you Jesus for this day.
Feb. 27
Night Post:
Thank you for all of you who prayed for us for Liam's rough day today...
Posted this verse b4 but seems fitting to use it again tonight:
Isaiah 35:4-6
4 say to those with fearful hearts,
“Be strong, do not fear;
your God will come,
he will come with vengeance;
with divine retribution
he will come to save you.”
5 Then will the eyes of the blind be opened
and the ears of the deaf unstopped.
6 Then will the lame leap like a deer,
and the mute tongue shout for joy.
Thankfuls:
-My hubby just made it back here safely:) Love having my family all together!
-Liam finally took a good afternoon nap
-They are decreasing Liam's calories tomorrow and increasing the ammount of time they turn it off in the morning...this will allow Liam to feel 'hunger' and he gets to eat as much as his little heart desires! wahooo! Please pray that he eats enough calories since this is just a trial (3 days or so trial).
-This is the cutest thing: Liam was laying on his mat playing next to me. He slapped my hand and said "five" and then he made his hand in a fist and knocked it onto my hand and said "Knuckles"...we did this back and forth for a while and it made him smile (and me too!) Keep praying friends..!!
Prayer Targets:
-Today was a rough one...He did not sleep last night hardly at all and threw up during the night as well. Threw up a little again in the morning during his feeding. The doctor is guessing that the throwing up was the changes in his tube feedings (formula stuff)...they increased the speeed and the ammt and sometimes that makes kiddos sick. and the crying/aggitation/no sleep to the withdrawls. Praying that that is all it is and that it will get better.
-Liam will be having another hearing test tomorrow (as long as he takes his afternoon nap-they want him sleeping) Please pray for some good signs on the test (a miracle?) and pray that he will nap tomorrow.
-Please pray for a good nights sleep for Liam.
-Please pray for him to feel better and have no withdrawls
-Pray that he will eat enough these next few days for them to decrease his tube feedings even more!
-Continue to believe with us and pray for a complete healing for our little Liam.
Thank you Jesus for another day.
Feb. 28
Night Post:
Thankful: Liam did not seem to show hardly any signs today of withdrawls.
Feeding summary:
Woke up this morning, feeling like I should expect something good. Liam had a good nights sleep (Praise God!) when I got to Liam's room in the morning Liam was playing with his Daddy:) No more aggitation. We found out the doctor ordered his calories to be cut in half...so that is awesome-allows him to be hungry. Then Speech came to feed him. Here's the bad part...Liam threw up again. He threw up again at his lunch feeding too. I instantly felt defeated and depressed and discouraged ...we finally got to where Liam wants to eat and they reduced his calories and now he's throwing up. By his dinner 'meal' they didn't let him have any thickened liquids to see if that might be what is making him throw up...he ate a little and didn't throw up for that. Please continue to pray, we need to figure out what is making Liam gag and throw up (possible things: thickened liquids, the tube in his throat, hightened gag reflext, solid foods causing gag reflex...)
I had my regular OB checkup appt. (everything's fine with baby #2 btw:) Casey stayed back to be there for the hearing test...after the appt. I stayed in the car because I was so discouraged from the mornings feedings and didn't want to go back into the room and hear more bad news (how is that for unfocused!?) I did do a lot of praying and wanted to not be negative when I went back into Liam's room. God is good and truly does give peace especially in some of our darkest moments, moments when we feel like we can't go on. Through all of this...I firmly believe that God has continually been telling us to "wait, trust, believe, and I am willing" I'm holding onto that and even when it's hard (like today was!) I choose to trust. Still in my car, Casey calls to tell me about the hearing test.
Hearing Test:
They only tested one ear today (he was sleeping on Casey) and they found improved hearing compared to the hearing test that they administered at Sanfords (which showed he had no hearing). It is only for low tones at a very loud setting but it's something, something that wasn't there before. They will continue more testing and trial different hearing aids to see if they may help. We don't know anything more than that. Pray friends...I believe we are seeing more signs of God miraculously healing our son. Pray pray pray believe believe believe!
Thankful:
Awesome happy day with Liam.
Baby #2 is healthy and getting huge (as well as my belly!)
Liam's hearing improved,even though small, it improved
Prayer Targets:
Liam to eat without throwing up.
Healing for his ears and eyes
sleep for tonight
another happy day for Liam tomorrow!
For us to keep our eyes on Jesus and not our situation
Thank you Jesus for another day.
Sorry this is a long post...:)
Feb. 29
Night Post: Thankful: *Laim had a pretty good day...he slept decent last night and was happy to content for most of the day.*Liam ate better today...they didnt let him have much of the thickened liquids to see if tht was wht was making him throw up...and there was NO throwing up today*Liam sat an his mat for 40 seconds, playing with toys, without help or support*He sat on a bench\step stool for 20ish seconds without support* he is standing with very minimal support *hearing test showed improvement in the right ear as well...still very impaired but improved. going to get fitted for hearing aides asap*he is starting to suck his thumb again Prayer Targets: *Liam to be able to eat and drink (tht tube is driving him crazy!) *Ears to show more and more and more improvements *Eyes to see *continued comfort and peace for Liam *complete healing *safety for friends and family traveling *healthy last 2 months of my pregnancy ***Thank you Jesus for today and answering prayers!!***
Psalms 146....So they told me my son was going to die.....they told me he was going to never move......they told me he would never breathe on his own......They told me we should unhook him and let him die......welllllllll.......good thing I dont put my trust in men, I put it in God!
So I am going to give the short list of awesomeness I have seen in 2 days!
-Liam took 71 steps, with minimal assistance.
-Liam took 8-10 steps with his walker with no help.
-Liam is eating well.
-Liam seems to be over the withdrawals.
-Liam was giving me knuckles and saying knuckles.
So I have had a great few days with my family. Remember if you out your trust and faith in the Lord, it pays off friends. He will not fail you, every man will. There is not a man or woman that will not let you down, lie, cheat, hurt, or steal from you. God is the only one that never let us down and he has been with us through this trial and is continuing to provide.
One last thing......The "Doctors" tested my boy, said he was deaf and would never hear......well they retested him and there is an improvement. He still has a serious hearing loss but it might be able to be corrected with hearing aids. God is good people.....he is moving keep praying!
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