Tomorrow is our big urology test at Riley. I dont know why I am thinking about this so much, but it has been on my mind so much in preparation for this day...Its the first big deal thing in a really long time where we will probably have to make some decisions on what the next steps are.
Things have been so healthy for Levi,and we are having the test mostly because things have been doing so well that we may be candidates for some procedures to help him be fully continent that are not usually offered to most children with spina bifida. At the same time, the test will determine it all...good and bad.. Levi is a few years young still for them to do anything about his continence, but I am pushing for it sooner than later because it is just very aware of himself and his struggles already at 3 years old..I figure if I get the ball rolling we will hopefully be continent this year. (which is huggggge!!!) I also want to be realistic that it may be important to wait a little while longer, or that things aren't going as well as I had hoped...all possibilities.
Just praying for wisdom for the doctors and for us parents.
Although walking seems like a hard part of Levi's life, the continence issue is pretty up there as a big deal to me....Please keep this in your prayers if you think about it!!
This morning we had the opportunity to have a little talk about how lucky it was that Levi has braces, and walker, and canes, and good doctors. We talked about how some children really need these things and don't have the means of getting them...
This thought has really got to me today, and the reality of what that would be like for some families? That they dont have the means to do something that seems so mandatory to us in america, such a hopeless thought. Or even back to the fact that we live in a place that could do so many incredible surgeries to help Levi and other children have a fantastic quality of life, whereas some children could easily face mortality because of the fact that they dont have this care.
In america we have this easy choice, but also there are families that don't have the means to do things even here in the US. So does their choice to wait on medical procedures and getting assistive devices because they don't want to go into debt for it make them a worse parent than the one who has the good insurance, or the one that is willing to go into debt over it? Just really had me thinking about the expectation to get what someone needs at all cost, versus living in your means in the medical world here in the US. I would hate to be thought of as a lesser parent because I couldn't provide that for my child, and was trying to do the right thing financially for my family as well.
I am certain in our lifetime with Levi we will be faced with some very expensive costs, and have to ask ourselves what the greater importance is. (uggggh) But in the meantime, we are SOOO thankful for our insurance, and that so far we have been fully covered for everything he has had to go through, and we are thankful to have options with Dr's and procedures, and equipment..( I mean we can pick colors even!!). I can't imagine the sadness that some have to face given the same circumstance in another part of the world.
So, yesterday was Monday, and Monday mornings are always a good day of reflection over the weekend and start to a new week. We had a fantastic weekend of lots of playing at the pond and zoo and outside...but one thing I kept noticing was that Mr. Levi kept saying, "mommy can you just hold me? I dont want to walk right now". Well of course who wouldnt want to hold this cutie pie, but let me tell you that its getting pretty tricky to hold this 40 pound guy lately and frankly its not usual for him not to even want to do his walker. He just kept saying "i'll just crawl mom". So Monday morning I really got to thinking about that and just praying over Levi's life and asking God to show me the wisdom of if I should push him towards something or let him choose ,and I also considered the possibility of a tethered chord issue (which would change his physical ability...) He didnt seem to be weaker but I just took note of these things..I told his Physical Therapist about my concern and just let me know if she noticed it...and of course he did great as usual during PT. Well every night we take a few minutes to practice whatever he's learning in Pt and right now its been tri pod canes. Up until last week its been very hard and we finally saw him take his first steps unassisted only about 3 at a time, then last week it was about 5 feet, but didnt really want to do it very bad...then last night something clicked...
EEEEE! this went on over and over, he kept saying "mom, I need a quick break" then moments later he would say "lets try it again"....It was so cool!!! He wanted to call grandma and see if she wanted to come see his new trick so she came over to cheer him on. We had lots of sugar for inspiration lol. When he was all done, he climbed up in his walker and walked back to his room and said "come on guys, its bedtime" lol. Thats VERY unusual!! And as I was tucking him in I said to him "mommy is really proud of you Levi, I know its not easy to do your canes and YOU DID IT!!!" he interrupted with "yes it is easy mom!" =) I told him how when he works hard it helps it get easier and easier and I was proud of his good attitude to try again (EVEN WHEN HE FALLS OFTEN!!!!) He said" thanks mommy, I need to rest now" Lol....I guess he was pretty wiped out... I was hopeful that maybe he would sleep in a little but surely as the sun rises he was up at 6:15....and he said " I need to put my braces on mom, and I need my canes..." YAY! Its happening =) Its amazing how each day can seem like you do the mundane and then one day it all comes together! I have been seeing little glimpses of that as a mom lately. Watching little things pay off. Sometimes it seems impossible to do something and I try to just push through it...like having 2 little guys walking at the same time (you know, not all the way obedient yet lol...they go different directions and I look like a loon trying to corral them while we are out) but a beautiful moment when 1.) Lennox learned how to hold hands and 2.) Levi is strong enough to stand with one hand and hold another one and it happend around the same time...so no the two of them can hold hands and walk together...UM THIS IS A REALLY BIG DEAL FOR ME HAHAHAH!!! I wonder, how will I ever get to the point where I can have little ones actually help around the house, and suddenly 2 little guys are right next to me trying to unload the dishwasher with me every time =) I wonder, will Levi get to use a regular raft when we go swimming this summer? ( he topples forward because his legs are so light weight on most rafts making them pretty unsafe, so we made one last year that helps) But this year he can use a regular puddle jumper and raft because he's gotten sp much stronger! I wonder will I have to lift him forever? Nope, he has gotten taller and can stand holding most surfaces, and is learning to climb up things on his own and will get better at it as he grows taller. I could go on and on about something i worried about and how it worked out.Its beautiful to see needs being met, and you just can't see how they will work out or how it wont always be a challenge...this is why I even take time to jounal these things, so that I can be reminded of needs being met all the time and be encouraged that God's timing is not my timing.
Matthew 6:25- 34“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?27 Can any one of you by worrying add a single hour to your life[e]?28 “And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin.29 Yet I tell you that not even Solomon in all his splendor was dressed like one of these.30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith?31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’32 For the pagans run after all these things, and your heavenly Father knows that you need them.33 But seek first his kingdom and his righteousness, and all these things will be given to you as well.34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
I am so encouraged by all the ways people cheer Levi on and we are so thankful for his determination, but I also wanted to say God created him with such a beautiful spirit. He has had his hand over his life since he was just a thought, and knows him, and see's his heart and his desires things I may never even know as a mom! Levi at a young age grasps God's care for his life, and understands His love in his own life. I continue to pray for wisdom of what he needs but we also know that the most important thing is to give thanks to God for creating such beauty. I don't just mean like a super cute little guy, but a little guy that constantly leads me back to hope in Jesus and his life means that to me and many others. Because we have hope through Him, not just for these day to day things but for eternity.
There are many things I could share about how much fun we are having enjoying life with two little cuties but there isn't enough time today. So maybe we will have part 2 soon ;)
For now will you keep Tuesday the 10th in your prayers as we are having a major test on his bladder to decide the future of his continence...We asked for this test because we have seen many many encouraging things. We are praying for his cooperation...(remember...he's just 3 going on 30) and also for no surprises...We also will have many options proposed to us at that time and we need the wisdom for what is best for him.
Thank you for taking a minute to remember to pray. It means so much to us!!!
I hope to write more soon. It's so good to sit and recap some things!
