Back to Square One

Well, after a week on the new medication (Prevacid), we only saw a worsening of symptoms in Nolan – no improvement. So, we are now switching back to the Prilosec. We will give it one more week on the old medication, combined with the chiropractic therapy…if we see no progress, then we will reluctantly move forward with scheduling the Upper GI. I don’t know what the results of that test will actually show us or how it will help us determine what to do, but it is the only way to truly “see inside” of him to view what’s going on.

We also had an appointment this week with the lactation nurse (again) and she was able to weigh him before and after a feeding. He had lost weight since the last time he was weighed. And, although it was only an ounce, it was hard for me. She also determined that because he hasn’t been eating well, despite all my efforts, my milk supply has decreased. So, I am now taking herbs to try and boost it back to the level where it needs to be for him right now. We will follow up with her again in another week to have him weighed and make sure that he has gained. If he hasn’t, that will also be an indicator that the Upper GI must be performed.

Every time we try something new, whether it be a medication or physical therapy or even a different feeding position, I keep hoping that this will be “it”…that this will be the thing that will cure him. I don’t know why I keep expecting a miraculous recovery when all the doctors have told us he will have this condition for a while. But, I keep hoping against hope that somehow he will wake up one morning pain-free. Until then, I am doing my best to stay positive and appreciate the good moments, however few and far between.

In Your Hands

I'm crying out to you today,
Broken and weeping as I pray.
Unsure of where to go from here,
I cannot escape the worry and fear.

Every day it seems it's something new,
And I'm left second-guessing what we should do.
Afraid of where this road will lead,
But, I'm trusting You'll give me the strength I need.

I believe You are sovereign over all things.
So, I'll praise You no matter what this day brings.
And though none of this is what I planned,
I know his life is in Your hands.

Ray of Sunshine

Because my last post was so gloomy, I wanted to share some wonderful news with everyone. In the midst of our hardship, the Lord has blessed us again. On Friday, June 6th, Lauren asked Jesus into her heart!!

We had been reading in our devotions that morning about our need for a Savior, about heaven and hell, and that the punishment for sin is death. She has heard the story of Calvary many times and understood what the cross meant, but this time when we talked, I could really see the wheels in her head turning. At the end of the devotional, it asked if she wanted to invite Jesus into her heart. She said that she did, but that she wasn't ready yet. So, I left it at that and said a prayer that the seed had truly been planted.

Later that day, after we had eaten lunch and I had just finished changing Nolan's diaper, she came up to me and said, "I'm ready to ask Jesus into my heart now, Mommy." I was shocked. I said, "Are you sure? Right now?" She said, "Yeah, let's go sit on the couch and pray." So, I had her repeat after me and pray. Right after we said "Amen", she said "Mommy, now Jesus is in my heart and I can hear Him talk to me!" It was the most special moment of my life as a mother - I was crying uncontrollably and here's my little girl, dancing around the room because she's so excited to be saved.

We proceeded to call our family members back home and I let her share the good news with each of them. During her nap that day, I set up our dining room table for a fancy dinner - I gave Lauren the "You are Special today" plate and had a birthday cake for dessert. I explained to her that every year on June 6th, she will get a birthday cake and we will celebrate the day she became a Christian. As I prayed with Lauren before bed, I asked the Lord to "comfort her when she is sad or lonely, convict her when she is wrong, and bless her socks off!" We are so thrilled for her and can't wait to see what God is going to do in and through her in the years to come. :)

Another setback

Nolan had his first chiropractic appt on Monday and it went well. The first visit was more of a consultation – she explained to us the kind of work she does on infants and why it is needed for some babies. She also just felt around on his neck and back and was able to pinpoint two areas that definitely needed to be adjusted. But, she did no real work on him that day. We walked away from the appointment feeling comfortable with our decision to pursue this as a treatment option and we scheduled two follow up appointments with her for Wednesday and Friday.

When we went back on Wednesday, she was able to do some “pressure point” adjusting on Nolan. He was as happy as could be the entire time, just smiling at her, like he knew that she was trying to help him feel better. After that day, everything changed. Thursday was one of the best days we have had since Nolan was born. He was taking better naps, not screaming during feedings and was so happy. I was a believer! When we went back to see the chiropractor on Friday, I told her how great things had been and when she inspected the area of his back she had worked on, she could tell that things were right where they were supposed to be. She still has an area on his neck that she needs to continue to treat. So we will go back a few more times for that. But, we are definitely seeing an improvement in him.

Now, for the bad news. Because our pediatrician back home had recommended Prevacid to us, we decided we had waited long enough and this weekend was the time to switch him over to the new medication. We were basically out of the Prilosec anyway, so we figured it made sense to start the new drug, instead of refilling the old one. The problem with the Prevacid is that it is only made in a solutab form…which means, if you were an adult, you would put the tablet on your tongue and let it dissolve. But, for an infant, you have to dissolve the tablet in water and dispense it through a syringe to them. The problem is that the tablet does not completely dissolve – it just dissipates into these little pink beads…which stick to the syringe and it is impossible to get them all out. So, needless to say, he didn’t get the full dose he needed and we are struggling to find a way to get this medication into him.

Because of all this, he has had a very rough day – back to crying during feedings, not taking good naps…and I’m fearful of what the night will bring. I’m tempted to switch back to the Prilosec, only because it was in liquid form and so much easier for him to take. Plus, we were beginning to see him get better, until we decided to switch things up. Talk about miserable – the worst part about treating a child with a chronic illness is that you are constantly second guessing your decisions. Is he waking up early from his nap because he’s hungry or in pain? Is the medication working or is it the chiropractor’s work?

I feel sorry for him, so I find myself making exceptions I didn’t with Lauren. And because he sleeps so little during the day, the naps he does have are necessary for him, so we literally don’t leave the house unless we have to. All grocery shopping is done in the evening while Ryan is giving him a bottle. We don’t go on play-dates or out to lunch or to picnic at the park. I haven’t even taken him to church since he was dedicated on Mother’s Day. My friends from church give me a hard time because I haven't been to all the social events lately and, while I feel badly for being so disconnected right now, I am doing well to just be surviving and not having an emotional breakdown. It's frustrating and hard for people to understand who haven't been through an ordeal like this.

I know that one day life will return to normal and maybe I will have a healthy and happy child. But, some days it is so hard to see the light at the end of the tunnel…and I guess today is just one of those days.

Look at These Two