Facing Regression

(Antonio at the doctors office)
I am the type of person that wants to nurture things and people.  A person that doesn't like to sit still.  A person that likes to take action and figure out how to fix issues.  I like to work hard.  I think one of the hardest things I have had to except, is the things I can't fix or help, that my children struggle with.    I know that their very life is in Gods hands.  I know He created them and is the one really doing all the work.  He is the one giving me great ideas to do and is ultimately doing a work in each of them.  Healing them.  Helping them to progress and reach goals.  God is so good.  I am so grateful to be the tool used and have witnessed so many miracles first hand.

I don't know why some prayers get answered and some don't.  I don't know why some healings take place miraculously, some over time and some we are still praying for.  I am human and just keep praying and trusting in the Lord as we walk thru things in life.  He has always been faithful and never left us alone thru any of it. 

We met Antonio when he was five years old.  He moved into our home when he was 6.  At that point in time he weighed 24 pounds and barely ate and drank enough to keep his body going and growing.  He was weak and tired a lot.

(Antonio on a fishing trip, he loves to fish if it is not to hot)
As soon as we adopted him we had an in-g-tube placed and as soon as they could do the surgery, had a permanent G-tube placed.

He was my first child with a feeding tube and had a lot of tummy troubles with all the high calorie formulas they tried him on.  Everything from vomiting, bloating, stomach pain and refluxing to dumping.  I prayed and prayed for God to show us the right formula he could tolerate.  That is when God showed me to start blending the healthy food we ate and bolusing it into his G-tube.  Praise God all the tummy troubles stopped and he started to really look healthy and put on some much needed weight. He also started to grow!

As soon as I saw he was stable and growing, I started to work with him to build up his oral muscles and endurance to eat all his meals by mouth.  I don't know why it was so important to me.  I guess because eating is such a social thing, I wanted him to be able to enjoy all the experiences with us of trips to the pizza place, picnics and such.  Also, it is a deep down thing in this mama to feed her children and feed them well.  So we all worked hard, however long it took, to help Antonio learn to eat better and more.

(surf fishing on Jekyll Island)
We had many set backs.  He had 15 shunt failures back to back over the course of two years.  Two of those times resulting in serious brain fluid infections that robbed him of many of his skills.  We would always have to do a lot of therapy to get him even close to back to where he was and some skills he never got back.

One of those skills was drinking by mouth.  During one of those episodes he lost his ability to protect his airway when swallowing thin liquids.  So from the time he was almost eight he could not have any drinks anymore by mouth.  :(   He missed his juice.  His favorite.  Even if we thickened it, he had troubles. 
From the time he was 9 till the present, he has not had another shunt failure.  Praise be to God.  But in the last year and a half he is slowing begining to loose his ability to protect his airway when eating.  Sigh.

It is a hard thing to face.  We have worked so hard.  It has all been fine for so long.

He would just eat three meals a day with us, where ever we were and just get all his fluids thru his g-tube, via a feeding pump, thru the night time.

About a year and a half ago he started having a lot more lung issues.  Needing breathing treatments often and having more asthma related episodes.  I started to notice it was after he ate.  His voice sounded wet and gurgly after he ate and he does not have a productive cough.  He also started gagging a lot on his food when he went to swallow.

This is an area that has caused me alot of frustration and stress.  I can't help him or fix it.  He just can not tolerate eating a full meal by mouth anymore with out causing breathing issues.  I don't want to risk pneumonia.   I keep struggling with it.  I give it to God and just except it and pray and then take it back onto myself causing stress.  I am giving this whole thing back over to God now and leaving there.  I have worked hard, prayed, worried and pushed in this area for almost two years now.  I surrender it to God. I am out of ideas and don't know what to do.  The doctors say it is his body aging.  

Bless his heart.  I am grateful for the feeding tube.  I am going back to blending all his food and bolusing him three meals a day.  We are not going to worry about it or stress over it anymore.  He is still getting good nourishment and is happy.  Sweet, sweet happy young man.  What a blessing.  (Yes, praise God he is over the emotional sadness he was dealing with earlier this year)

I am letting  him eat something every day by mouth like a snack or treat he likes, just to keep him eating some by mouth a little to keep his muscles in shape and working but not forcing the issue.  He will actually ask for a few chips or cookies..  So I let him. Since it is something he asked for and just a few he is excited and works hard to eat with out gagging or troubles.

We will be going again to his GI doctor in August to see if they have any other ideas.  He had a swallow study done when this all started over a year and a half ago and I bet they will want to repeat that.  To me, it is just stressing him out to eat full meals and causing him gagging episodes and then lung and breathing issues.  I don't like to see him struggle or upset. He is such a happy young man to the core 99% of the time.  I am not going to push this issue.  If it is gone it is gone.  We will take it in stride and except and enjoy the wonderful blessing of Antonio.  God is truly so very good.  All the time. 

Romans 5:3-6  And not only so, but we glory in tribulations also: knowing that tribulation worketh patience;  And patience, experience; and experience, hope:And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us.

May God be with you in every trial and joy.

Blessings,
susan