The Sovereign LORD is my strength................... (Habakkuk 3:19)
Today has been pretty rough. Especially on Caed. He was up the whole night last night. He might sleep 30 min. and then need to go to the restroom. This continued ALL night! Finally at 5am, he began complaining his tummy was hurting. I decided at that point to stop the G-feeds. Caed has been on the "unflavored" Neocate formula. However, Home Infusion called several weeks ago and asked if the "chocolate" flavor would be ok b/c they were out of the plain. Honestly I was a little hesitant at first, but thought....oh well, I'm sure it'll be fine. Well, last night we finally ran out of the plain, and I had to open a new can of the chocolate. His HH nurse thinks that might have been what made him sick all night. She said there have been a few other kids that did not tolerate the flavored formulas. When you compare the ingredients on both cans there are a couple of differences. We're just not sure. I went to Hm. Inf. today and got a couple of boxes of the unflavored, so I guess we will see tomorrow...... ????
Caed was in lots of pain today, threw up 4 times, and was overall very miserable. Today was such a reminder to us of many days passed. It's amazing how quickly you forget the bad days after you have so many good (normal) ones. Caed's eyes were also a little sunken and he complained several times that his toes were tingly and that he couldn't bend his fingers. ???? Oh Lord.....we pray that it is nothing!!!!
We went to our GI dr. to get his weekly weight. He has lost 2 more lbs. this week!!!! Not good.(he's now 32 lbs.) We did not have an actual appt. w/ the dr., just weighed and talked a little with his nurse. I'm sure we will be hearing in the next day or two when he wants to see us again. I suppose we will also get the results from the UGI then.
We also had our first appt. with the play therapist. I was a little hesitant in going today, simply b/c Caed was feeling so bad. However, after he "got sick" he lay there on the couch and fell asleep. (I know he was exhausted after his awful night). It actually gave her and I a good opportunity to talk. We spent an hour there. I told her the "whole story" and she explained what play therapy does and hopefully how it can help. I am glad we went b/c today was one of those days where Caed did not speak a lot....used his sign language....grunted....was extremely clingy...and cried a lot. It helped me to realize that even though he has made tons of progress (behaviorally), the trauma he experienced is still there. It's just easily hidden when he feels well. We will meet with her each Mon. afternoon.
My heart has been so heavy today. It was such a let-down after having so many good days/weeks lately. I was also very frustrated at his weight loss. To see the way this little boy has been eating....and yet to think he's actually losing weight instead of gaining it. Not sure if he will have to go back on TPN or if dr. will just increase G-feeds.....???? Please pray specifically for this!! We have come SO FAR....and yet today felt like we took 10 steps backward. It's also rough b/c Todd is in Colorado. We will not see him for 9 more days. Pray that tomorrow can be a new day!!!
...for His compassions never fail. They are new every morning; great is Your faithfulness. (Lamentations 3 : 22-23)
6 comments:
Too bad you didn't weigh in before the horrible night! I'll bet there would not have been a weight loss. The "tingling" in the extremities could be from dehydration. Keep your spirits high, he seems to do better when everyone is relaxed and having fun. I'm thankful you decided to continue the play therapy and she got to see his behaviors when he is not feeling well. I pray she will be able to help you both through this. Oh Lord, heal this precious little boy!
Bridget
Lord, please continue to give Lori the strength and grace she needs to get through this. She has touched so many lives and I know you are and will continue to use her in mighty ways! Please let her know that we are standing in the gap with her! Continue to heal our little Caed bear. Just continue to bless this precious family Lord with all of your goodness!
Hang in there Lori. We love you all so much!
Tina
Still praying Lori even after all of the good days and especially during the bad ones... Allow your heavenly Father to step in this week while Todd is gone to be the daddy... Love You and Still Praying!
Just wanted to let you know you are still in my prayers.
MeLin
I will pray for you guys!! I can't imagine how you are dealing with this all still so well after all this time. I am glad you go to talk with the therapist, even if little man passed out!!
Hi Lori:
I have missed our prayer time together @ 2:00 am. It is close to that time here in Washington, DC. I wanted to let you know while Todd and the youth (including my two teenagers) are in Durango, we could agree in one accord protection and the completeness in Caed's healing process.
As we stand in the gap, dear Lord, during this precious week, I want to first Praise Him and thank you Lori & Todd for the faith walk the Lord has taken you through.
You decided to put your faith in God, and have experienced glorious deliverance. It is a new way of living. You have exchanged fear for faith in God. It will take time but don't be discouraged.
Lord, we come to you now asking for your strength and courage to keep on keeping on! Continue to work in Caed's body to be completely made whole. We stand on your promises & healing power. We will not lose heart.
Attend to our hearts dear Lord, uphold our steps in your path and surround Caed, Lori, Reagan & Caleb with your love this week as Todd is away at Student Life camp. We speak your goodness and kindness to envelope this family establishing your authority upon the earth. Amen!
In our prayers,
Randy, Nancy, Hillary & Matt Richardson
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