Day 3 and 4: Feeling hopeful

IMG_783926 more days to go! And we got outside today!  Wahoo.

Gabi is incredible.She is just blowing me away with her determination and hardwork. She makes me want to be a better mom and person.

Every morning we receive her schedule that consists of 7 and soon to be 8 therapies. And, not surprisingly, they all love her.




She gets Speech, PT, OT, 4 meals a day and starting on Monday she will be receiving her school classwork.

speech-Her therapist is great. She has finally given me a good explanation as to why Gabi’s checks are so chubby and why she can’t swallow! Her cheeks are thick, very low sensory and very low muscle tone. She needs a lot of input to trigger those muscles to make them work.  Because she never had a bottle and never ate anything her first year of life, her muscles never got used.  Her awareness of those muscles isn’t there. So, speech will do a lot of stretching her cheeks and a lot of sensory input in her mouth. She has Gabi doing strength exercises that are very tiring.  I am watching closely to learn how to do this at home.

This is through the 2 way mirror

This is through the 2 way mirror

OT therapist is working on general strength and balance. She has Gabi doing sit ups and confronting her  gravitational fear and anxiety. She is pushing Gabi hard. She is also working on brushing her teeth and sensory input.

PT therapist is working on  jumping, balance, general strenth, and Gabi’s favorite the bike with pedddles and hand peddles.

feeding therapist- this is definitly the toughest for Gabi.  She is told to eat, chew and swallow with little sympathy and little emotion. The therapist is tough and pushes her to drink and eat. And Gabi works so hard with her!

school time- We had to unenroll Gabi from Bennett and enroll her in the local Dallas ISD so she can be a part of the hospital bound program, There is a classroom teacher that works with all the kids of school age here. This will start Monday. yay!

We had our first Huddle today.  That is a meeting with her entire team including-

Social Worker
Clinic Manager
GI doc

The team definitely all agreed that she is doing great.  We don’t have that much data to work with so they won’t make any big decisions until tomorrow even though I asked.

Her weight schedule is MWF. Monday her weight was 17.1 kilos. Wed. she was up to 17.2 kilos. That’s up 100 grams.

They meticulously count ever calorie that she gets.

Tues- She ate 288 calories orally and also got 850 calories through her G-tube feeds of pediasure 1.5
Wed. She ate 304 calories orally and got he same 850 from g-tube
They’ll have her calculations for calories and a new weight tomorrow morning. If her weight is up again, they will start to decrease those g-tube feeds. I am pushing for aggressive treatment here.

Unfortunately, I know how this all works. It’s ALWAYS about the numbers.  They tend to focus too much on her getting the exact amount of calories she needs and its frustrating.  We all know kids have days where they just don’t eat and they are fine.  But they did remind me that because Gabi’s heart works so hard, she burns a lot more calories than it looks.

I still want them to be super aggressive and I think it would be good for her to feel hunger and she just might be more motivated to eat! Makes sense, right? We’ll see it they listen to me.

Pray for a big weight tomorrow morning! And pray for a not big weight for me!  I  seem to have the opposite problem of Gabi. lol.

Child Life is awesome here. They plan activities for the kids like craft time, bingo nights, and playdough time.

This is a house fort that Child Life built in the playroom

This is a house fort that Child Life built in the playroom

My deep thought of the day is- as I watch Gabi go into her feedings and she is crying for me and she doesn’t want to go, it hurts me.. a lot. Of course, any mother knows this heartbreaking separation anxiety. When Gabi’s PT made Gabi  climb one more rung of the ladder even though her muscles were so tired and she was terrified., I watched and didn;t rescue her. I knew she could do it!

I look around at all the parents here with their children with so many medical and emotional issues.  So much sacrifice here. And SO much love here. But the love is not a heartwarming one.

This love is not a romantic feel good kind of love.

This love is not nice.

This love can be ugly and painful.  This love is telling a child to learn a skill with a complete stranger that everyone else seems to be able to do without a problem and they do it even though they are so afraid and don’t understand.

This love is forcing a child to take an awful medication and then you catch the vomit when it comes up or when it comes out their nose and you know your child has aspirated once again.

This love is making sure your toddler daughter doesn’t trip over her tracheotomoy tube when she is toddling around.

This love is holding your adult sized teenage son down while he is having a childish tantrum that he can’t control and possibly putting yourself in danger.

And this love is protecting that child that everyone tries not to stare at but feels sorry for and might give a pitying smile.

This kind of love is bringing your child to therapies when you are so tired you can’t see straight.

This kind of love is advocating for the ones that can’t advocate for themselves.

This kind of love is unfair but this kind of love…..

….. is God’s favorite kind of love.

I am so blessed to be witnessing love like this.  Love that almost breaks a person.

It’s amazing.

Again, thank you all for your support!  Gabi had a good day!

Much love this Thursday evening,


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