Blurred Focus

It’s been 70 days since we got discharged.  We came home and followed the system exactly like they told us.IMG_8419

A strict 25 minutes with me having complete control. I said “take your bite, Gabi” and she did it, though reluctantly. We followed the pattern of 2 bites and a drink… over and over and over.  Because of school, we decided to only do 3 meals a day.  It was hard. It was exhausting. My feeding arm was sore.  I had knots in my back.  But it was working.

When I say, it was working, I don’t mean she cooperated 100% of the time.  I don’t even mean she cooperated 75% of the time. But I held my ground. I maintained control and Gabi was keeping her weight up.

My other children didn’t understand. They tried to help. They wanted to help and they felt conflicted.  They grew impatient with her and with our methods.  They saw her crying and gagging and then me ignoring the behavior.  I think their hearts were with Gabi.  And I think they were right.

About a month of being home, Gabi expressed an interest in holding the spoon herself and wanted to take the bite all by herself.  Of course, I let her! Isn’t that, as parents, what we strive for? independence?  I say yes. So, I let her.  She found a way to gain some control.  Which I was ok with.

Sounds great, right?  Well, she would take the spoon, stir the food, stir it again, scoop some blended ravioli onto the spoon and then shake it off, stir it up again, scoop again and then scrape some off.  After I prompted her several times to take her bite, the spoon would be lifted as if in ultra slow motion and finally reach her mouth. The spoon would sit near her lips for a slight moment and then she would finally take the small bite she was asked to do. It took every last bit of my patience.  How can you love and sympathize with a person so much but also want to strangle them at the same time!  There is no manual for this.

I have since consulted with the outpatient psychologist and her 2 feeding therapists and they wanted me to take back all control and go back to the methods of inpatient.  They said she is not ready for independent eating. Her private OT is working on the coordination of lifting a spoon to her mouth. We are still going to 7 therapy appts a week.

After another month of tears and frustration, we are coming up with our own plan to instill independence, confidence and have Gabi enjoy eating.  We are certainly not perfect and the inpatient clinic did teach us so much. We are forever grateful. But it’s time for our own system. We are doing sticker charts, working on chewing and independent eating.  She lost about a pound and a half but the doctors are OK with this. Gabi has turned into a little bit of a drama queen and I don’t do well with that. But we are working together and I have complete confidence that Gabi will eat and get off that G-tube.

Max had to have a gown too. lol

Max had to have a gown too. lol

Cardiology Appt

Wed 4/15 Gabi had a cardiology appt at Chidlren’s Medical Center in Dallas. I have to say I LOVE OUR NEW Cardiologist!  He is just so amazing.  Gabi had an ECHO, an ECG, labs and an exam.  All looks good for the moment.  We discussed closing the fenestration in her heart but since she is doing OK, he doesn’t want to mess with anything.  We discussed her future and signs of heart failure. That is always an uplifting conversation.

My biggest struggle right now is trying to treat Gabi like a normal child.  Her IEP (ARD) meeting is coming up on May 14th and I know the school district is going to tell me that she is doing so great and yes, I agree, she is doing so great.  But I struggle with that.  Are they trying to build her up so that they can get out of helping her?

Gabi won an award for perseverance at school :)

Gabi won an award for perseverance at school :)

She cannot keep up with her peers, she is no way age appropriate in any subjects or any areas.  But sometimes I feel like all I see is her weaknesses. I don’t want to just see her medical issues.  The way I watch my other children is so very different.  I love when Marissa is jumping on the trampoline with her friends and I supervise with loving eyes. Her laughter makes my heart sing.  I watch Ethan and his friends take off on their scooters down the street. I feel joy for him and I worry, of course, but not because he can’t handle himself. As I help Thomas with his science experiements, I am in awe of his knowledge and his desire to learn more.  I look at his beautiful face and his physique and smile.  I gaze at Max and smile while he is jumping and playing with his friends and there is no greater joy when he jumps into my arms. Gabi can’t jump into my arms. Our physical affection is different.

And when I watch her, I watch that she doesn’t get knocked over by her friend or that she isn’t turning too blue, or that she can make it down the curb on her own.  I watch her from across the room when she drinks her milk waiting for signs of aspiration.  I see medical needs, I see safety concerns, I see a winded Gabi that needs a rest. I try and look at her in a loving gaze and I try to not see the scars but sometimes all I do see is the work it takes to be her parent.  I am happy to do all the work. I really am.  But sometimes, it’s just lonely.IMG_8341

I want to see her strength with no weakness… because there is so. much. strength. I want to see her courage with no drama … because there is so. much. courage. I guess without the weakness and without the dramatic struggle, there would be no triumph. And she is so happy. Her smile is all I shall need.

Today I pray for Gabi. Today I pray for marriages. Today I pray for all young people that are being bullied. Today I pray for my children.  Today I pray for my husband and all husbands and their jobs. Today I pray for teachers.

I have so much hope, so much joy.  I hope you all do to!

With much love,
Teri

Happy Easter 2015

Happy Easter 2015

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