I have not written in over a week as it has been a busy week.. trying to get life back into shape and pull some order to the chaos of how we ended 2010. I am well on my way to making some much needed changes.
We had some bumps along the way this week with Sam's new GJ tube. The first was last Tuesday night when I handed Sam over to Jason's arms and realized his GJ tube had popped out in the transfer. This is such a mess to have reinserted as it has to be done under floroscopy x ray to make sure it is placed properly in the intestines and if it comes out completely he has to be intubated with anesthesia. It did not come out very far though and so we got it back in and headed to the ER for xray and all was fine. Then yesterday it happened again! UGHH!! The nurse had just bathed him and it popped out as she dressed him but this time it came out much farther so we had to head to Sacred Heart and have it replaced by interventional radiology. This can not be happening every week.. I will loose my mind. We had to wait forever and the whole day was gone by the time we got home. Thank you Lord for my good friend and mother who came to the rescue with the girls.
Aftter a full day at the hospital yesterday, I got home and asked Bella how her 100th day party at school went today and she said.."Well, it's tomorrow..you dressed me for it on the wrong day. I was out of uniform on the wrong day." UGHH.
Sam is making progress with his therapy and is in general very happy. We are working on getting to the skill of sitting and working with foods he can hold and try to taste on his own as opposed to spoon fed which has not been going well. Eating has been a very difficult area for him since birth on several levels as it requires coordination of breathing and swallowing and as his airway is very floppy and with his low heart rate dives we have to be very careful about exertion and stress. Weighing the risks and benefits of each effort to feed him by mouth (choking and aspiration risks against his need to learn to eat) are what fills my mind each and every day.
The main thing I am praying hard about right now is insurance..gotta have it and am beginning to feel like it will never come together. The agent is working hard for us and leaning on the underwriters for a swift responce but it may come down to Samuel having to go under an expensive gap conversion plan on his own. Either way we need to get something in order soon as all the parties need to bill for everything and I have paid out of pocket for as much as is possible right now. His meds alone in one month are more than most people's mortgage payments and then you add the medical equipment, hospitalizations and constant appts and ER visits. It is overwhelming. I find myself crying at times only to realize this is beyond any normal person's means and I have to laugh and just decide to take it one day at a time.. one bill at a time..one emergency at a time..one shift of prepping meds at a time.. one phone call arranging the meds, appts, equipment and insurance at a time... It is all anyone can do. I am doing my best. He is so deserving of my very best. He thanks me one smile at a time..one warm embrace at a time...one sweet open mouth biting chin kiss at a time.
I found this poem online this morning and thought it was a good one to sign off with today. Tomorrow will be a fresh day for us and I pray for all the rest of you as well. God gives us strength enough for the day we are in.. the moment even. I don't think we are born with everything we need for what lies ahead. He helps us rise to the occasion. He is strong enough for all of it and we just have to trust Him and focus on today.
One Day at a Time
One day at a time, with its failures and fears,
With its hurts and mistakes, with its weakness and tears,
With its portion of pain and its burden of care;
One day at a time we must meet and must bear.
One day at a time to be patient and strong,
To be calm under trial and sweet under wrong;
Then its toiling shall pass and its sorrow shall cease;
It shall darken and die, and the night shall bring peace.
One day at a time - but the day is so long,
And the heart is not brave, and the soul is not strong,
O Thou pitiful Christ, be Thou near all the way;
Give courage and patience and strength for the day.
Swift cometh His answer, so clear and so sweet;
"Yea, I will be with thee, thy troubles to meet;
I will not forget thee, nor fail thee, nor grieve;
I will not forsake thee; I never will leave."
Not yesterday's load we are called on to bear,
Nor the morrow's uncertain and shadowy care;
Why should we look forward or back with dismay?
Our needs, as our mercies, are but for the day.
One day at a time, and the day is His day;
He hath numbered its hours, though they haste or delay.
His grace is sufficient; we walk not alone;
As the day, so the strength that He giveth His own.
BY Annie Johnson Flint
Deut. 33:25 ...and as thy days, so shall thy strength be.
2Cor. 12:9 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.