So originally we had planned on sending Makily to summer school. She would get her PT,OT and speech while there. It was Mon & Tues from 8-1. Well the first several weeks things were crazy here, either I was sick, Makily was acting sick or something was happening.
Finally Allen just said let's do private therapy for the summer and give her the summer out of school.
So we went back to see Mrs. Elon last week. I just love her. Makily does too.
Which leads me to this decision that Allen and I had made a while back but that I have not really talked much about.
We had stopped orally feeding Makily at all.
It wasn't like she was taking large amounts by mouth. In fact it was minimal and ALWAYS a fight. I can probably count how many times in four years we had a feeding session where Makily was not screaming and fighting me through at least half of it. Makily's ability to eat by mouth (or lack thereof) has been a HUGE source of stress and sadness for me.
There are so many reasons why she does NOT want anything to do with food. The cards were stacked against her from the get go.
Here's a little history on Makily's struggle with eating.
Birth: Cleft palate with Pierre Robin Sequence, Severe hypotonia, delayed swallow with severe suck, swallow, breathe dis coordination.(all that in a nutshell means she had a hole in the roof of her mouth, her jaw was pushed WAY far back and her tongue was balled up in the back of her throat obstructing her airway at times. She has low muscle tone and that INCLUDES the muscles that help coordinate eating and so her coordination was a mess)Six weeks: Diagnosed with SEVERE GERD AND *trace aspiration with oral feeding.(*to this day I do not think she truly had aspiration during that swallow study as THREE professionals reviewed the tape arguing (in front of me) over whether or not she actual aspirated...two said they didn't see it, the speech therapist SWORE she did over and over so the other two relented and said "well if she did it's just a trace amount) I was advised to STOP all oral feeds until we could get the reflux under control as Makily was at high risk for aspiration pneumonia from not only the *possible oral aspiration but the reflux too. She had lung damage from the meconium aspiration at birth and I as told pneumonia would likely land us back in the hospital...we had only been out of the NICU two weeks at this point. We were given medication to try and control the reflux to no avail.Three months: Nissen fundoplication done to stop Severe reflux, pyloroplasty to help her stomach empty and G tube revision.Four Months: Makily had intermittent dumping and retching syndromeSix Months: G tube started leaking. Spent a month at Shands where she almost died (click here to read about that nightmare). G tube eventually removed after a total of six weeks leaking and an NJ tube was placed (which caused MAJOR issues with putting ANYTHING in Makily's mouth as she ALWAYS had that tube in the back of her throat) at APH Childrens.Nine Months: Had speech eval, we were NOT cleared to orally feed yet by her doctors and were in the process of transferring EVERYTHING to APH Childrens. (I was sneaking some baby foods in though)Ten Months: NJ tube removed, G tube replaced.Eleven Months: FINALLY cleared to oral feed again *with caution*One Year: We saw the craniofacial team and were PRAYING they would repair her cleft ASAP. It was causing major issues with eating because everything that went in her mouth came out her nose. This made Makily VERY mad. Due to all of Makily's airway issues, intubation problems and the fact that she has problems with anesthesia (going down and coming out of it), they insisted on NOT fixing her cleft until she was 15 months old....then they put it off until she was 18 months.Makily's first year and a half was spent on and off in the hospital, having surgeries, pneumonia, breathing problems, retching and in pain.
During that time orally eating was not a priority and was dangerous.
All that being said.....I logically know that with all those problems, even with a "typical" G tube child you will have oral aversions and feeding issues....so add in a severe genetic condition and things get really hard.
Even still I feel like I have failed Makily miserably and it makes me cry.........a lot.
Last December at the Christmas parade we had bought some boiled peanuts. I smushed one up and fed it to Makily. She loved it. Smiled and everything....I was even more proud when she swallowed it. Ten minutes later she started coughing and tiny smushed up pieces of peanut came out.
She didn't swallow it, it had just been sitting in the back of her throat the whole time.
That was a pivotal moment for me.
I decided I was not going to force her to do something her little body just can't seem to do. I stopped doing it. I stopped putting pressure on myself about it.
I gave up.
The guilt and relief of that is tremendous.
I do feel a terrible sense of failure. I remember when Makily got her G tube I swore that we wouldnt need it more than a month or so. Here it is four years later.....she still has it and deep down in my heart.....I know it's a permanent part of Makily.
So after talking with Elon last week she asked me what I would like to get out of therapy with Makily. Obviously communication is one thing and then I said this and after I said it, I lost it.
"I just want her to swallow".
Something so simple.
I just want my daughter who I love more than I love myself to learn how to swallow. It hit me like a ton of bricks when I thought about what a SIMPLE thing that is. I am not asking for the moon God. I just want my baby to eat.
Is it too much to ask? Is it?
So I am setting back out on the "feeding Makily" journey yet again.
I am going to try and not pressure myself or Makily about it. If she freaks out too much or gets too angry then I will stop until next time. I don't think she will ever be rid of the G tube but I would love for Makily to be able to enjoy something simple like a Popsicle or ice cream. She can't control her saliva and that is something I would love for her to be able to do...or at least do better than she does now.
So here is a little video of today's session with Elon. We focused on communication and play a lot today and Makily did a
REAL FIRST!She VERY purposefully waved bye bye when Elon asked her too. I couldn't believe that she did it AND that I was actually taping when she did!
Check it out:
