Last night I was talking to my Dad – sharing some updates on what has been happening with the twin’s health. For the first time, I told him the story of how lots and lots of money fell out of the sky – meeting our needs for our health insurance deductible, and completely paying for BabyM and BabyR’s immunotherapy (not covered by insurance) for the year (all before 2010 was even over!). My dad was kind of struck by what sounded to him like a really big faith. He said, “What I hear you saying is that you have the word of God as your foundation.” Leading up to his statement, I had told him that I have a “James joy” and that I have had to ask God for that wisdom that he “gives it without reproach,” I told him that again and again I have heard God telling me to “wait and know that I am God.” I meant every word of this from the bottom of my heart. I wasn’t trying to impress him. I wasn’t speaking in “Christianese” – just telling the story as I always do – as I see it.
I guess maybe it sounded like I had this huge faith. That is what struck my dad. Yet the truth is that lately I have been struck by the fact that all I have – and thankfully all I need – is just enough faith and strength to get through each moment. So often the prayer that comes from my heart is “Lord I do believe, help my unbelief.” I constantly confess my “faith of a mustard seed” and then I do the ONLY next thing that I can. I rest on the promises that I have received from HIM – the “author and finisher of my faith,” and I genuinely try to move forward doing what I believe to be in line with what He wants me to do.
“I know the plans you have for BabyM and BabyR Lord, plans to prosper them and not to harm them; plans to give them a hope and a future.”
I cling to that.
I don’t like to say that my foundation is on "the Word of God. Maybe it is because that sounds like the "Sunday School answer" or "Christianese" to me. Here is it - my foundation is ON GOD! Don’t misunderstand me, I know that means believing what I read in the Bible, but I am clinging to HIM – the REAL LIVE GOD OF THE UNIVERSE! I am clinging to what it true and solid and UNSHAKABLE. I rest knowing that every time I am surprised by another FPIES turn in the road – HE IS NOT. I marvel at the promise that He will work tirelessly so that I CAN wait on him – “for he gives to his beloved even in his sleep.”
Thank God that I don’t have to rely on my own efforts. I would go to bed every night in failure - after NOT being able to figure out how to feed my children. It really is SO hard for me to wait on Him, but that is where I lay down my own weakness and chase off the temptation to rely on my own power and abilities – “for when I am weak then I am made strong” – THROUGH HIM. I cannot do anything about this FPIES nightmare, but HE CAN!
I do not have a giant faith. This is not Chritianese or vibrato. This is JUST ENOUGH faith to get through the day.
“My help comes from the Lord, maker of heaven and earth.” Psalm 121:2
Monday, January 31, 2011
Wednesday, January 19, 2011
I Am Asking Lord
Sometimes this FPIES roller coaster has just too many curves. Nothing outrageous is happening – that’s not it. It is just so difficult at times to even know what to do next. The kids have been cleared to trail a new food for a week and we haven’t been able to start a trial because we just don’t know quite where to go at the moment.
GAPS diet, CHOP’s suggested food, intuition… I feel like we may as well flip a coin!
On the up side we did try “muscle testing” which gave us a list of foods to avoid and a list of foods to consider. The only problem is that it is not 100% - and completely new (and untrusted) to us. The procedure is actually called Applied Kinesiology, and was recommended to us by the kid’s primary doc (who we love). I fondly refer to it as “hocus pocus,” and there are many out there who say it is just that. If you search it on the net you will find it called “quackery” among other things. Here's the thing; first, I trust our doctor and second, WHAT ELSE DO WE HAVE TO GO ON!!! I did speak to a woman who had been doing the immunotherapy that the kids also do – she also uses this “muscle testing.” She warned that while a “no is really a no, a yes is really a maybe.” So we tried it and will utilize the results – we’ll see if they prove useful.
One option is to trial rare and exotic foods – starting with exotic meats as a healing (joints and marrow) broth. I am very interested in the logic and science behind this (GAPS diet & LDA expertise), but I am overwhelmed by the logistics of pulling it off. At this point I feel like just trialing grass-fed beef since it is so easily procured here in central PA. Then there is Emu. I can find this in a small amount for a 10 day trial, but then would have to have it shipped if it was a pass (until this summer when the local farmer is ready to butcher again). This is overwhelming.
At the same time that I am AGONIZING over making the decision, I am troubled by the fact that we are just standing still. I am also troubled by the feeling that we are holding BabyM back. I think she is much more ready for food than her brother. This presents a difficult dichotomy for me – both emotionally and practically.
These kids just want
to EAT. BabyR is refusing just about every “bottle” lately. Yesterday he only took 6.5 ounces ALL DAY. I am not kidding. He should be taking at least THIRTY-FIVE! I went in shortly after he fell asleep and fed him (we usually only do this around 11 pm) – he took all 8 ounces – so I just can’t figure out what is going on there. Is this behavioral? Is he sick? I really don’t know. I do know that he still has his “feeding tube follow-up” on the 9th. This kid has 21 days to pack on the pounds like his sister did. Now to just get him to take his formula, and maybe get an additional food in his menu.
GAPS diet, CHOP’s suggested food, intuition… I feel like we may as well flip a coin!
On the up side we did try “muscle testing” which gave us a list of foods to avoid and a list of foods to consider. The only problem is that it is not 100% - and completely new (and untrusted) to us. The procedure is actually called Applied Kinesiology, and was recommended to us by the kid’s primary doc (who we love). I fondly refer to it as “hocus pocus,” and there are many out there who say it is just that. If you search it on the net you will find it called “quackery” among other things. Here's the thing; first, I trust our doctor and second, WHAT ELSE DO WE HAVE TO GO ON!!! I did speak to a woman who had been doing the immunotherapy that the kids also do – she also uses this “muscle testing.” She warned that while a “no is really a no, a yes is really a maybe.” So we tried it and will utilize the results – we’ll see if they prove useful.
One option is to trial rare and exotic foods – starting with exotic meats as a healing (joints and marrow) broth. I am very interested in the logic and science behind this (GAPS diet & LDA expertise), but I am overwhelmed by the logistics of pulling it off. At this point I feel like just trialing grass-fed beef since it is so easily procured here in central PA. Then there is Emu. I can find this in a small amount for a 10 day trial, but then would have to have it shipped if it was a pass (until this summer when the local farmer is ready to butcher again). This is overwhelming.
At the same time that I am AGONIZING over making the decision, I am troubled by the fact that we are just standing still. I am also troubled by the feeling that we are holding BabyM back. I think she is much more ready for food than her brother. This presents a difficult dichotomy for me – both emotionally and practically.
These kids just want
to EAT. BabyR is refusing just about every “bottle” lately. Yesterday he only took 6.5 ounces ALL DAY. I am not kidding. He should be taking at least THIRTY-FIVE! I went in shortly after he fell asleep and fed him (we usually only do this around 11 pm) – he took all 8 ounces – so I just can’t figure out what is going on there. Is this behavioral? Is he sick? I really don’t know. I do know that he still has his “feeding tube follow-up” on the 9th. This kid has 21 days to pack on the pounds like his sister did. Now to just get him to take his formula, and maybe get an additional food in his menu. I hate the moments when I feel at a loss for direction. At this moment our medical team is telling me to make the decision (I love our team – they trust a mother’s instincts and knowledge). I am just feeling a little stuck – maybe fearful or inadequate (to make the decision).
I know that the HE has promised to give wisdom to those who ask. I am asking Lord.
James 1:5
But if any of you lacks wisdom, let him ask of God, who gives to all generously and without reproach, and it will be given to him.
I know that the HE has promised to give wisdom to those who ask. I am asking Lord.
James 1:5
But if any of you lacks wisdom, let him ask of God, who gives to all generously and without reproach, and it will be given to him.
Saturday, January 15, 2011
Nothing Short of A Miracle
Thursday was BabyM’s big day – the “feeding tube follow-up” appointment with the GI doc. I had been feeling good about BabyM’s weight gain during the past few weeks, but I honestly had no idea what the doctor was looking for in terms of gain. Even though we had no intentions of putting in a tube at this time (in light of her progress) I really didn’t know if we would be fighting an up-hill battle with Dr. D.
Nurse R. came in and weighed BabyM – commenting very little on her progress. She weighed in just under 21 pounds and since her foot was off the scale I had to ask if that mattered – I was really hoping that their scale would have her over 21 pounds since the nutritionist’s scale had her at 21 pounds 1 ounce the day before. No luck – Nurse R. recorded the official weight 20.8lbs or 9.45 kilos, and left the room “unmoved” by BabyM’s gain.
When Dr. D. walked in he happily stated “we’ve seen some gain here – that’s good.” He immediately asked what we had done differently. I told him the bare bones truth – the only one who had done anything differently was BabyM. “She was just interested in eating more formula,” I said. This version of the truth left out basically all of the truth. The facts are plain and simple: the only thing we did was pray. Well we also waited, hoped, and prayed some more – oh and we asked others to pray. Actually we sent out an all points bulletin – an emergency SOS – to our powerhouse prayer list.
Dr. D. just sat there looking at me – with a – no really what did you do differently look on his face. I looked back at him and said nothing. At the time it had not really hit me yet, but Dr. D. simply could not believe that we hadn’t changed anything. He began listing possible explanations. “Did you start feeding therapy? Did your nutritionist add a food?” Honestly I can’t even remember all the scenarios he threw at me – probably 4 or 5 – before I realized that he was not going to stop asking. He was simply bewildered at the progress and needed to make sense of it with his scientific brain.
“I guess Shawn and I have been more deliberate at offering formula more often,” I offered.
“Oh, ok, that can do it sometimes,” he said.
This was such a flimsy explanation but needing ANYTHING to grab hold of Dr. D. eagerly filled the blank spot in his mind with this information, and then he instantly resumed his monotone affect and continues on to the usual exam questions.
At the end of the clinical assessment he started to seem more and more excited that we didn’t have to have a feeding tube. There he finally said it – NO TUBE! Wooooohooooo! He actually cleared BabyM for TWO months. He finished up with the physical exam and answered my last question.
“This is really good news… really good. This sure makes things easier,” he said smiling.
It was almost as if he JUST realized the magnitude of BabyM’s progress. It seemed as though he had mentally prepared himself to have to stand his ground with me – and that he had been waiting for some other information to pop up throughout the course of the appointment that would have led him to the same conclusion. As the end of the appointment drew near he became increasingly excited. For a very short moment I thought he was almost giddy.
“Whatever you are doing keep it up,” he said to me as he was leaving the room.
“Honestly the only thing we have really done is pray.” There is was – there was the TRUTH – the REAL explanation Dr. D. had been searching for.
“Well if that‘s what it takes…that’ll work,” he said.
Here it is:
It wasn’t until later – at home – that it really clicked for me. I knew that BabyM’s progress was an answer to prayer. I just missed how much of a miracle this really is. It’s kind of like the phenomenon of watching your children grow. You see incremental changes every day that make is difficult to see just how much they have grown and changed, but if you went away for 6 weeks (like on of my mommy friends just did) and come back to see your 6 month old – you REALLY notice the differences.
This progress – and answer to prayer impacted me in tiny incremental ways – I missed the HUGENESS of the change because I was too close. The more I reflect on Dr. D.’s reaction, the more I KNOW the magnitude of this miracle.
Here are the hard numbers to consider:
6/9 – 18lbs 14oz (below average gain)
7/14 – 19lb 3oz (normal gain)
8/13 – 19lb 10oz (normal gain – plus a little)
9/13 – 19lb 6oz (LOSS)
10/14 – 19lb 8oz (below average gain)
11/11 – 19lb 5 oz (LOSS)
12/6 - GI appointment – “4 week countdown to feeding tube”
12/8 – FORMULA INTAKE – 22.5 ounces
12/8 - SOS Email for prayer
12/9 – FORMULA INTAKE 31.5 ounces!!!! (the most EVER taken in 1 day!)
12/9 - 19lbs 8oz (below normal gain)
12/17 - 19lbs 14oz (4x normal gain!)
12/27 - 20lbs 3oz (almost 3x normal gain!)
1/12 - 21lbs 1oz (5x normal gain!)
Realizing that we have no options – nothing extra or better (read – higher calories) that we can feed BabyM – this is truly nothing short of a miracle.
Nurse R. came in and weighed BabyM – commenting very little on her progress. She weighed in just under 21 pounds and since her foot was off the scale I had to ask if that mattered – I was really hoping that their scale would have her over 21 pounds since the nutritionist’s scale had her at 21 pounds 1 ounce the day before. No luck – Nurse R. recorded the official weight 20.8lbs or 9.45 kilos, and left the room “unmoved” by BabyM’s gain.
When Dr. D. walked in he happily stated “we’ve seen some gain here – that’s good.” He immediately asked what we had done differently. I told him the bare bones truth – the only one who had done anything differently was BabyM. “She was just interested in eating more formula,” I said. This version of the truth left out basically all of the truth. The facts are plain and simple: the only thing we did was pray. Well we also waited, hoped, and prayed some more – oh and we asked others to pray. Actually we sent out an all points bulletin – an emergency SOS – to our powerhouse prayer list.
Dr. D. just sat there looking at me – with a – no really what did you do differently look on his face. I looked back at him and said nothing. At the time it had not really hit me yet, but Dr. D. simply could not believe that we hadn’t changed anything. He began listing possible explanations. “Did you start feeding therapy? Did your nutritionist add a food?” Honestly I can’t even remember all the scenarios he threw at me – probably 4 or 5 – before I realized that he was not going to stop asking. He was simply bewildered at the progress and needed to make sense of it with his scientific brain.
“I guess Shawn and I have been more deliberate at offering formula more often,” I offered.
“Oh, ok, that can do it sometimes,” he said.
This was such a flimsy explanation but needing ANYTHING to grab hold of Dr. D. eagerly filled the blank spot in his mind with this information, and then he instantly resumed his monotone affect and continues on to the usual exam questions.
At the end of the clinical assessment he started to seem more and more excited that we didn’t have to have a feeding tube. There he finally said it – NO TUBE! Wooooohooooo! He actually cleared BabyM for TWO months. He finished up with the physical exam and answered my last question.
“This is really good news… really good. This sure makes things easier,” he said smiling.
It was almost as if he JUST realized the magnitude of BabyM’s progress. It seemed as though he had mentally prepared himself to have to stand his ground with me – and that he had been waiting for some other information to pop up throughout the course of the appointment that would have led him to the same conclusion. As the end of the appointment drew near he became increasingly excited. For a very short moment I thought he was almost giddy.
“Whatever you are doing keep it up,” he said to me as he was leaving the room.
“Honestly the only thing we have really done is pray.” There is was – there was the TRUTH – the REAL explanation Dr. D. had been searching for.
“Well if that‘s what it takes…that’ll work,” he said.
Here it is:
It wasn’t until later – at home – that it really clicked for me. I knew that BabyM’s progress was an answer to prayer. I just missed how much of a miracle this really is. It’s kind of like the phenomenon of watching your children grow. You see incremental changes every day that make is difficult to see just how much they have grown and changed, but if you went away for 6 weeks (like on of my mommy friends just did) and come back to see your 6 month old – you REALLY notice the differences.
This progress – and answer to prayer impacted me in tiny incremental ways – I missed the HUGENESS of the change because I was too close. The more I reflect on Dr. D.’s reaction, the more I KNOW the magnitude of this miracle.
Here are the hard numbers to consider:
6/9 – 18lbs 14oz (below average gain)
7/14 – 19lb 3oz (normal gain)
8/13 – 19lb 10oz (normal gain – plus a little)
9/13 – 19lb 6oz (LOSS)
10/14 – 19lb 8oz (below average gain)
11/11 – 19lb 5 oz (LOSS)
12/6 - GI appointment – “4 week countdown to feeding tube”
12/8 – FORMULA INTAKE – 22.5 ounces
12/8 - SOS Email for prayer
12/9 – FORMULA INTAKE 31.5 ounces!!!! (the most EVER taken in 1 day!)
12/9 - 19lbs 8oz (below normal gain)
12/17 - 19lbs 14oz (4x normal gain!)
12/27 - 20lbs 3oz (almost 3x normal gain!)
1/12 - 21lbs 1oz (5x normal gain!)
Realizing that we have no options – nothing extra or better (read – higher calories) that we can feed BabyM – this is truly nothing short of a miracle.
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