A Good Thursday!

Elijah's catheter was removed today! It was supposed to be removed for five hours and then replaced. However, Elijah surprised us all by urinating normally while it was out. When they did the bladder scan, he had only a small amount of residual. The doctor said he fully expects to see us return in less than a week and need to replace it, but I'll take a reprieve for now.

In two weeks, we have an appointment for another scan and a catheter clean out at a minimum.

We are also ordering a watch for a Elijah that will remind him to use the potty on a strict schedule. If he begins to retain again, we are to take him immediately back in.

Despite my pushing, the urologist was not willing to order the MRI. But I was pleased with his reasoning. He said that if he ordered the MRI and it did not show a tethered cord, we might not get a real evaluation from the nuerosurgeon. He feels strongly that it is nuerologically based and would like to pursue that further. At the very least it is the left over side effect of the original tethered cord.

Thank you for your prayers, we'll rest well enjoying this short break!

(In the picture you can see the cath bag tied to his ankle-this was so my mom could see how big it was.)

Day One Down

The testing today went pretty smoothly. I'm anxious to get the results tomorrow. When we first arrived, Elijah's catheter bag started leaking, so I had to make an unexpected stop at the urologist's office to get it changed. Then, we went back down to the diagnostic center for the ultrasound.

Elijah was wonderful and laid very still on first his tummy, then his back as they took lots of pictures of his kidneys. The tech could not give me any information, of course, so I don't know what it means, but it looked like the right kidney measured a good bit larger than the left. She also kept measuring a bunch of smaller things, I asked what they were, she didn't really answer - just said there was fluid there and it needed to be measured. Then she left to "go talk with the doctor" and came back and said they wouldn't be running the other tests today; but she did say that Dr. O'Halleran would have the results before our first appointment tomorrow, which is at 8:30.

Thanks for your prayers and a special thank you to Cathie Reyes who has been helping more than you can imagine by having Grace and Micah on both Monday and today. You're the bestest, Cathie!

Wednesday

So today is supposed to be a day of testing for Elijah. Mainly an ultrasound. They'll try to get a good look inside and see what is going on. They'll also try using the catheter to fill and empty his bladder I believe this is to see if it stimulates any spontaneous contractions. The urologist didn't hold out high hopes for this, but it's a step he has to try in order to keep moving forward.

I slept fitfully last night, kept spinning my brain trying to figure out how to get him in front of the nuerologist. Praying that a door will open. Anyone have intimate connections with a pediatric nuerosurgeon? I'm not certain that it is nuerosurgical - but I'd like an MRI scheduled to rule it out. So at least we know. The first time we went through this, no one thought it was a tethered cord, it was discovered by accident. But that accident (miracle) saved Elijah's life.

On Monday, Dr. Wehby's (neurosurgeon that performed original tethered cord surgery) office started the day saying she couldn't fit me in for six months, then later in the day decided to work us in on August 19th, but said they didn't think it was nuerosurgical - that the type of tethered cord that Elijah had Never Re-tethers. This is confusing, since right after his first surgery, they told us that we would need to do an MRI every 12 months to watch for re-tethering. And it is these inconsistencies that have me wondering if we are missing something that could give us the answers.

Thanks for your prayers - they are appreciated.

Oh and I want to be sure to give credit to Visual Empathy for the bottom photo above - thanks Kristina!

Fighting for Elijah

For those of you that have known us for a while, you know that Elijah is a miracle. Just before his one year birthday, his bladder and bowel stopped working and it took three days in the hospital, before doctors could tell us what was wrong. In the meantime, he lost use of his arms and legs, and his bloodwork showed signs of his liver and kidneys shutting down. Then they found the problem - a tethered spinal cord. Apparently, Elijah has spina bifida, but since it was a closed defect, we didn't know until the cord worked its way in a knot around his spine, and as it pulled tighter, the nerves were prevented from doing their job. However, in Portland, Dr. Wehby was nearby and able to perform surgery to sever his spinal cord and set it free. We had about a 30% chance of him gaining back the control he had lost. But he did - everywhere except his bladder. His bladder worked on an overflow basis, when full, the extra would just flow out. He couldn't potty train, but it was do-able.

Until Sunday.

On Sunday afternoon, Elijah began screaming and didn't stop for three hours. I took him to the Emergency Room because I didn't know what else to do. They thought his appendix or maybe something else had burst and "fast-tracked" him straight back and he was seen in a matter of minutes. And within five minutes they were doing an ultrasound, which quickly showed the problem. His bladder was full - like so full it was holding 2-1/2 times what an adult bladder should hold when it's super full. His bladder had stopped working all together.

After consulting with Elijah's urologist, the E.R. doc put in an indwelling (long-term) catheter. Unfortunately, these things aren't made for children and the bag goes from his ankle to his thigh! He will be wearing it permanently for now. Except I'm not okay with that. Mainly because it's a neurogenic bladder - meaning something neruoligically is not telling the bladder to work - so I want him to be evaluated by a neurologist, but the nerouolgist who did his original surgery is on vacation, so we have to wait, but if we wait and he gets worse, it can be too late and the damage can't be reversed.

So pray for us as we fight for him - to find answers and keep this from being permanent. and pray for Elijah that he can understand and enjoy every day despite all the changes he is having to endure.

Busy-ness Business

Our business (Handyman Can!) is booming, as is often the case this time of year. Lots of new customers and projects to keep us running.

Speaking of running, it's been so busy lately, it has been tough just to keep up. My hubby worded it well when he said: "It's hard when it's slow because we need money, but it's hard when it's fast because it seems impossible to keep up." Just two months ago, we were hungry for work. We prayed and prayed for more work. We laid off all our employees and it stunk. God provided for all of our bills, often just at the last minute, sometimes in ways we didn't expect. Now, we have a glut of work, like serious overflow, like hire-more-people-yesterday Glut. Amazing, right? We have just what we prayed for, but we are exhausted.

How do you keep up? We have been running non-stop day and night for three weeks straight and there's no sign it will slow down. For me it's been a struggle to focus on what's really important, to slow down enough to see God working. It's easy to see His provision when we don't have money in the morning for a bill due that day, but have it before the day is over. It's so evident that He has provided and I find myself constantly praising Him for everything. But what about when we have all we need and a lot of what we want too? It's times like this that I get busy and forget to praise, forget to "lean not on my own understanding." It's times like this that I am most miserable.

So tonight, I'm trying to praise God for all he has provided and to be joyful in the busy-ness, without grumbling, knowing that God has given me only what I can handle, with His help. He heaped these blessings on me, I only need to enjoy them. I need to continue to seek Him and rest in His perfect peace in the middle of the blessings -- learning to focus on God, not the gifts He has given.

Hear my prayer, O Lord

It's early - about 6:30 am and I'm awake. At this point it's easy to look at things and feel like our family is at the tipping point. Mostly it's finances that are weighing us down. As I formulate plans to pay down debt for both the business and for personal, it seems more than we can do. How can we begin to pay down debt when it seems such a stretch to meet the minimums?

We've looked at every option. Abandoning the house we've been living in and remodeling as a lease/purchase and moving back to the one we own is one of those options. The biggest problem is that it is so far away from the school where our daughter attends and we feel like this is a place God gave us, He led us here and has allowed us to come so far during such a tumultuous time for our family.

Last week, I was struggling with my own abilities as a wife and mother, expecting baby number four. It's been a tough pregnancy - lots of morning sickness and pain in my back and I still have a ways to go. I stayed up most of one night wrestling with arranging my schedule to make it all work. I couldn't formulate a plan. I finally just turned it over to God, asking for his "peace that passeth understanding". I told satan to stop bugging me, to stop telling me the lies that I was a failure at everything. I felt so much better after this time in prayer and daily reminding myself of God's promises, that I slept. It doesn't sound like much, but it was huge.

Now this week, we are reminded of the debt we owe and again I am overwhelmed. As I awoke this morning I turned Psalms, where I found words that were there for today. "My days are like a shadow that declineth; and I am withered like grass. but thou, O Lord, shalt endure for ever; and they remembrance untao all generations...He will regard the prayer of the destitute ... The children of they servants shall continue and their seed shall be established before thee. "

I am beat. I don't have what it takes to continue, but the same isn't true of my Lord. He continues. He is strong for me. His plan is the one I need and I need to rest in his promises. So I off to rest more completely in Him, knowing that daily I will need to remind myself to allow Him to take my burdens and give me his peace; certain that his mercies never cease and he has promised to give exceedingly and abundantly above all that we ask or imagine.