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 syndrome
Six 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!
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 syndrome
Six 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:
Check it out:
11 comments:
oh trish thats so cute. i so long for emma to talk.. ive missed your video's keep them coming. and i seen her wave to. wish we lived closer so they could play together.. take care
Such a beautiful little girl and so full of personality. I have been following your blog for the last year and was inspired to write this for Makily.
I will speak to you
In a way no words are needed
To tell you of the joy that is life
I will show you
A brightly colored toy
And a blowing blade of grass
So
You will never look at them the same again
I will teach you
To soak up each moment
And every opportunity to smile
Come into my world
I'll take you by the hand
And show you my way
Oh that is adorable Trish.
You know what is best for your daughter. You want her to have the best life possible and you are making sure that is possible.
She is such a sweet little peanut.
Well yay for her waving!! No mistaking that and you got it on tape (I totally understand the victory of that in itself lol). Don't beat yourself up about Makily and feeding, you are doing the best you can for her and believe me I understand fear of choking. You are doing a great job. Little J is so lucky to have you taking care of him too!
Heather
Great video.
I know the feeling of feeling like a failure about eating. Nahomie received her G-tube 3 years ago and that was such a battle with myself to get it done. I felt like if I can't feed my child I have failed as a mother. She has come along way since getting the G-tube but I think it was becasue I was not stressing about how much she had eaten for the day and feeding sessions were no longer a battle.
I turned to blended up our food to put thru her tube so that she could still have what I was eating. She now eats orally but still has the tube for liquid and days when she doesn't feel like eating as much as she should.
I said all that to say I truly understand where you are coming from and will say a little prayer that she will be able to swollow
I just read your post with all the issues you had when she was so sick. What a lucky little girl to have such a wonderful mother like yourself. I have too been in your siduation of despair with a sick child arguing with a "doctor" to help us. I am so sorry for what you have had to go through. No one should have to feel that way in a place of "help". I can only say it watch out to those doctors if you are put in that position again. We don't know what is in store of the future of our children but live life as you see fit and enjoy every moment as we all know how fast things can change. I love following your story. Thanks for sharing it with us. Take Care!www.caringbridge.org/visit/dannyosero
"The guilt and relief of that is tremendous."
I can't even tell you how many times that phrase has crossed through my thoughts. I know we deal with some different "issues", but the bottom line is that we're always pressured to do a little more, in hopes of helping our girls be all they can be. The pressure can be absolutely overwhelming. When we decide to "take a break" with therapy (or oral feeds, as this case may be), I feel one second of relief as THAT weight is lifted. Of course, as I exhale, I see the NEW (often heavier) weight being hoisted onto my shoulder.
And then sweet Makily waves. And everything feels just a *little* bit better!
Oh I've been there with the feeding tubes. My son had his for over 3 years and it was such a struggle to get him to transition to oral feeds. He has Prader Willi Syndrome and was born with severe hypotonia and such a small mouth & chin that they thought he had Pierre Robin syndrome. He had NO suck whatsoever until he was almost 2 years old. He had a delayed swallow and trace aspirations. He also had GERD and the Nissen surgery done. It was a LONG 3 years. I shed many tears trying to get him to eat by mouth, watching him cry and try to get away from the spoon. It was horrible. I pray for you and Makily daily.
Trish, the wave is wonderful!! I'm so glad it brings tears to my eyes. Thanks for sharing it with us.
Lucy
mom to Elijah, PRS
That was great seeing her wave along with the therapist. Very cool.
HOw sweet! I'm praying that it will be God's will for Makily to swallow. Hope you are all doing well! Love, J
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