victories and losses part 2

Merry Christmas and Happy New Year everyone!

We have been getting used to Levi's new twister cables over the last few weeks, some great milestones happened immediately..one being going from sit to standing for a few seconds, able to ride a tricycle by himself! So thats pretty neat to see from the start. I am hopeful that there will be more progress as his legs are in better alignment giving stability. Its good to see his legs not doing the crazy rotation thingie they were doing before so I am thankful for that.
they are pretty flexible over all, but very bulky still....

you can see them in the picture here, I made some different covers to go over the elastic strap that goes around his leg since the strap is white...seems to be a pretty nice way to make it blend in a little more.
The waist is like a big weight lifting belt made of metal which he doesnt really care for...i put a tee shirt underneath but it bothers him if he leans back a little bit. so its a belt, connected to the cables on the side, straps around his thighs and connects to a pair of shoes...under that he wears his AFO's (braces)
 He had been more compliant than i expected but within the first few days said "mom, get this weird thing off of me!" and "mom, why do i have to wear this big thing" so that was kinda tough and I sure do wish he didnt have to...I think he sees the benefit of wearing them though so he doesnt really fuss about it anymore thankfully or it would break my heart.

One hard thing is using the rest room...here we go through all the effort to get him to be able to go potty on his own and now its an incredible challenge to get the thing off to go to the bathroom....

I need to get the straps changed out for something a little more durable as he is so active and they always come unlatched...

When I would have him out of his walker and in the shopping cart for example I didnt feel like people knew he had a disability (maybe they did...) but now this is a definite obvious thing...so I think that I have grieved some final grief on him "looking normal" or should I say grieving...

He was doing a great job climbing up onto things, but this brings more challenge for that.


I still dont feel like its the fix for everything I hoped for...I am still going to make an appointment with his Dr.whether or not his dr thinks he needs to be seen this year or not. Just kind of feeling a little lost with his next steps at the moment and praying for direction.  No doctor is going to care about his future like I do, but I am praying for doctors that try to, and that the Lord would give me wisdom on where to go for that. Its a hard realization that I am sure every parent has that NO one will tell you how to walk through life with your children, and thankfully too! but sometimes I just need direction.
Lots of people ask me if I am connected with other spina bifida families and the answer is YES! I am so thankful for them, but out of the 4 families we are close with, each of us has a different journey with our kiddos..Spina Bifida is  not a cut and dry diagnosis and can be so different for each person effected. We seemed to have good support with the spina bifida clinic we have been going to, but one thing is that its in Indy, and the other thing is that its going through a lot of change at the moment which means its not as strong of a support at the moment.  Just asking the Lord for continued wisdom with the next steps and knowing that He is faithful.

Victories and losses - part1

Oh the amount of life that has gone on since I last posted....and that is true so many laughs, so much personality...so many questions. There is LIFE that has been going on which is just beautiful...
Today I am writing because of just things that I'm trying to wrap my head around and usually this helps me ;)

This summer we have seen tremendous efforts with Levi..two main things were that the Urologists realized that he is able to go potty on his own, and although we still are cathing, we are doing it less and moving in a direction we didnt ever expect with spina bifida (being only 5% of patients can actually do this) so that was a long journey to get those results and we are working on the next steps of all of that in the next few years...

The other thing was that he began walking with his forearm crutches, which was just a tremendous victory  to see! He learned hour to get into his own chair and can pull himself to about anything... All the things that have lead us to these points have been tremendous effort on his part and tremendous leaps of growth and celebration...

In the last few months his PT both at school and the one we see independently and myself, have all noticed a tremendous change in his gait..not in a good way =( not just his gait but his legs just buckling when he stands..and it looks terrible like its gonna hurt something. Right away when we noticed this we decided to get him fitted for twister cables which is something he will wear to keep his feet and legs in alignment, which we have put off due to him being able to manage his legs with just his braces and a stretchy velcro thing called a d-rotation strap on his one leg wheras this is much more involved....  Any time we place an order for any device, the standard wait time is 4-6 weeks....here we are and it may be past 6 weeks at this point ( because they got lost in the mail...) and we have been spending this whole time trying to protect his structure especially his knees from rotating as well as hips so spending a lot less time with practicing walking except walker at school and more time on other strengthening...Lots of swimming, lots of kicks....but its been a while now.  He has days where I see him walking fine again and really straight, and then days like this weekend where I was horrified to watch him take a step and just wanted to pick him up. and ultimately he is pretty discouraged..... ughh..total sadness for me when he is discouraged..

So a few things going through our minds are:

1. could just need the twister cables and then once we focus on weight bearing again we will regain the strength and things are ok

2. Possible spinal cord tethering (we so hope not) because of the rapid change and function loss...we are watching for more signs of this

3.could be just since he has grown a tremendous amount his body is getting used to all the change..

4.

5.

6.


I dont know...just wrecking my brain trying to think what... and like is there something I need to be looking in to more to keep him walking...or is this just what it is and I need to be ok with that? Its so hard to know..because you could have one thing fixed and then Bam your back in business...

Its a very lost feeling..

Also to add to this....Our pediatric ortho guy is...o.k...he is super nice but always is telling me "dont worry, this is just the way it is with spina bifida" and is always finding it amusing that I am concerned with these things and saying "stop worrying about these things" ..I had a clinic apt at riley and he was supposed to see us and wasnt there....then i rescheduled the appointment and they canceled and he said we really dont need to be see until after we figure out if the twister cables work..but that means this has been since February last year that we have been kinda "on our own" on this. Its disheartening and I feel at a loss of if I am doing the right thing. I feel like sometimes Dr's will say "well they have spina bifida, so......" and that means less efforts towards quality of life or addressing concerns like all my answers were given the day he was diagnosed.

I am so thankful for the Pt's and orthotists we have though that are helping us field through these things and help me seek the right things out...Often times I feel like I couldnt do it without their advise and direction. We have been so blessed in those relationships!

So tomorrow is the day....We will slap those things on and pray for the best....it's going to be a big change...its going to be hard to get used to..i'm sad about it...i'm sad about how they look...i'm sad that he needs them...i'm sad that when I pick him up that he always has had "Stuff" he has to wear..and yet thankful for it it. I'm sad because he knows its hard for him...

Can you just pray about this with me? We always need the wisdom to do whats next...I'm hoping we will know in a short time if this is our answer.

Tomorrow

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!!

Thank you!

So much to be thankful for

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. 

Thank you Lord for this provision for our family

Big News!!!

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!

amazing..

Hi everyone, there is just too much to write since its been so long...
But I can't go to bed without sharing something amazing...yes its personal in nature, and maybe TMI
but it moved me to tears several times tonight as I reflected on this..

Levi has used a intermittent catheter 4 times a day since he was 6 weeks old...we know that he can pee on his own, but his bladder muscles are not strong enough to contract to get all of it out..this causes a risk of reflux into his kidneys...so this is a big thing in the world of dealing with spina bifida..nerve damage doesnt just stop at the legs but is also internally from the lesion point down. Bowels are also affected and many can be at risk for bowel obstruction with not being able to contract the muscles to allow the stool to pass...again sorry for all of this tmi...
We have already been blown away that since 15 months Levi has gone #2 on the potty, and rarely in his diaper. He now tells me when he needs to go, and although its not "easy", its pretty amazing that he can 1. tell me, 2. hold it in, 3. make it happen.

I have praised God over that so many times, and been in wonder that he can even do that...
Recently I have been noticing that he's been telling me every now and then when he has to go pee though, which is pretty shocking....so I usually do a catheter whenever he tells me, and then he tells me he feels better...but recently its been often....amazing....even waking ne up ib the am bc he has to go potty!! so last night he was sitting on the potty, and he figured out how to make it come out...it was hilarious to him, he thought it was pretty amusing....when I cathed him I only got a little bit out...much less than usual...tonight he wanted to try to go potty again and this time I couldnt get anything out. ANYTHING! I tried 3 caths thinking surely I was doing something wrong but I wasnt!  This is wear my tears couldnt stop....I dont know if this is permanent or whats next for him, but I do know that I have had lots of time praying specifically over his body recently asking God for specific things. I have been already rejoicing over so many milestones that have been unexpected, but this one is a pretty big one. Even in the slightest bit of feeling recently, this is a tremendous thing in our world. Don't stop praying for his little body. Thankful for continued blessings and the privilege it has been to see each miracle in his life.

I hope to share more soon...I can't imagine life any busier at the moment, but we are enjoying every minute!