Day 11-15.Worst to best

Day 11- Friday- WORST DAY EVER. Truly, I hit my low.  I hit my breaking point and so did Gabi. She refused everything. Every offer of food. I couldn’t get the staff to listen to me and I wanted to take Gabi and run as far away as possible.

“This is normal” “We expect this.” was all I heard. I had had enough. We were not here for behavior issues, Gabi needs the skill to eat.

But we did receive a visitor and it totally brightened our spirits for a few hours. I hadn’t seen Gabi that happy since we were admitted. Our friends delivered gifts and cards from her Kindergarten class.. it was awesome. It was pure grace.

yay for great Texas friends

yay for great Texas friends

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Day 12-Saturday- Refusal after refusal. Presents and packages were arriving from our beloved friends and family but we couldn’t give them to Gabi to reward her for her obstinate behavior. It became a battle of wills and we had to win now.

It was awful.

No leadership staff here. on weekends. Feeling lost, feeling hopeless, feeling helpless, feeling discouraged, feeling angry.

Ethan and I needed to change things up. I headed home and Ethan came to relieve me.  By the grace of God, he knew and was able to take Monday and Tuesday off, so we had planned for him to be here for a few days so he could see what was going on and get a fresh perspective. I have the best husband!

Day 13- Sunday-I was home! Hallejuia.  It was wonderful. But I received lots of communication with f-bombs from Ethan. lol. He saw the frustrations and struggled with the sad, confused rebellious child that Gabi  had turned into. He agreed that she didn’t seem like our little girl.  He saw the flaws in the program as I did and felt the frustrations with no one to talk on the weekends.

Day 14- Monday- Still home- Amazing!  Ethan experienced a weekday.  He spent the day taking it all in. The therapies, the feedings, the routine, the nurses, the vital stim. He waited to talk with the psychologist and the leadership team but no one came to talk with him. Beyond frustrating.

Day 15- Tuesday (today)- Ethan had had time to gather his thoughts and was able to present them logically and rationally to the team.  Gabi was not entirely refusing anymore. She had surrendered and had started to receive stickers once again from Ethan. But she was sad and still confused.

A picture of her Kindergarten class from  the awesome Mrs. French and flowers.  She loves to look at this picture!

A picture of her Kindergarten class from the awesome Mrs. French and flowers. She loves to look at this picture!

He spoke with the psychologist today and they miracously  agreed that Gabi was ready for the next step. Ethan got Gabi a better cup for her to drink with, they started to giver back a little control of allowing to take a drink out of the cup on her own.  Then I heard the best news ever! I WAS GOING TO BE ABLE TO GO INTO HER FEEDINGS!  I hurried back to the hospital to make it for her scheduled snack time.  I was told just to go in and observe but I could praise her.

When I told Gabi that i was going to come in to the feeding room with her, she was confused.  I told her that she had to show me all that she has learned. Once she kind of understood, her face lit up and I saw the sparkle in her eye return.

And wouldn’t you know it, she rocked it out! She ate every bite and drank 4 oz of her thickened milk with the Carnation Instant Breakfast (CIB) with a smile on her face! I was so proud of her and I knew she would do well when I could be with her.

Control and behaviors are not her issues.

She needs the skill to eat. Whether I disagree with their protocol or not, we are over that hump and can move forward from here! And even though I am disgruntled with the program and this has been the most difficult 2 weeks since I can remember, we have already learned a lot and I will  celebrate those successes.

And- I am not delusional, I know we will have battles, and I am glad that they are preparing me for those battles and equipping me with a plan, but I don’t think “breaking” her and having her “surrender” was necessary.  But I feel like we have climbed to the top of the mountain and now we can work our way down… until we get home. Lol.

Thank you all for the preents and packages and cards.  We haven’t opened them all because we are spacing out the presents10445949_10152987019819831_3349614723264939459_n and using them for rewards for her good behavior. Even though, I am dyeing to just let her go crazy and open them all.

Thank you for the meals and the visits, and the dinners, and the prayers!

Thank you to Colleen for all of her help. We are forever grateful.

Friday was the worst and Today was the Best so far.

AND we are more than halfway through !!!

Much much love,

Teri

 

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One Response to Day 11-15.Worst to best

  1. Donna OHearn-Koral January 29, 2015 at 6:10 pm #

    Hi Teri, Keep your chin up! Im glad you had a breakthrough from worst to best! Praise God – he is merciful! I guess I didnt see the comment area or would have let you know I pray daily and check the blog when I can!! Im sure its been so very hard for you!!
    I have seen Gabi get very stubborn and refuse and it makes sense to me as she has had little control over her world and this is one area she has been able to by just doing her tube feeding as it is difficult for her! Poor thing!!! I didnt realize it was blended food either, as she was doing the textures with us! Very disheartening I can only imagine! So she will be on blended foods when she is done?
    Keep your faith, God will guide you all through this, most especially you and Gabi!! and Im so proud of the success she has made and weight gain and all her progress!!! Lots of Love, Mrs “O”- Donna