The reason WHY

     Here we are at the beginning of fall, my favorite time of the year. I am thankful for change in the air that seasons bring! I don’t know what it would be like without it, but for me a season change spurs on new ideas and thoughts and I am thankful for that! When I think of this time of year, starting at the end of July, all I can think about is the back to school rush! 10 years of working retail helped ingrain in me the NEEDS that families have for this season, getting an entire year of the best clothing all on one day. For us store managers we thrived off of this way of thinking, because lets be honest it effected our sales in a tremendous way.

Now years later on the other side, I am faced with my own season of back to school and having to think through what are the expectations that others place on us as parents. 

   One thing I have learned is that many others have strong opinions on how we should raise our children. Its something everyone feel comfortable sharing with others, but what ends up happening is that I don't ask myself what are MY goals for parenting. These children are a gift that has been given to me, and I want to be careful not to just jump on the bandwagon of what everyone is doing without knowing WHY I am doing it! Since before my oldest was born, people directed me on what I should be doing next, I am so thankful that most of the guidance given to me was so helpful, especially as a new mom, but also as a mom with a son with special needs. I have never been in this situation! I certainly didn't know anything about what I was doing. But here I am 6 years later, now with 3 kids...I am still not a pro and I certainly still need all the help I can get, but one thing I realized recently is that most of my life with kids, someone has told me what to do next! Now, if you know me, you know I am not easily following what the next person says, I think about it, pray about it and think and think lol. But heres what I found is, I had this set of goals for what I want to be doing as a parent, these things I want to teach my children, these values I want to put into place for our family and many people want to suggest to me that that is great! but your are working with a child with special needs, give yourself a break..this is the easier and best way to go...heres what you do_____ almost discarding or making and exception for the values I see as a need.. as if to say oh yes that is good, but focus on that for your other kids. Now before you think I am being bossed around, these influences are all meant in love for me and my kids! None of them are BAD suggestions or meant to harm anyone.

Philippians 4:6-7 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

THIS. This verse is about everything. I mean do I stress about how I am going to raise my kids? Why yes I do. But what I know is that I need to bring all things to God and ask Him for direction. All things! Good things, fun things, things that may be good someday, may be good now. All things. Like...A heeemmmm What about what am I doing with my kids each day? How we spend out time….All things.

Last year I found myself in this situation…. Levi had 2 days a week physical therapy...1 day occupational therapy..3 days preschool which included Ot and PT..horse therapy...integrated soccer...Not to mention the other time I spent with him is many hours of self care, many Dr. visits.. His plead to me every day was “I JUST WANT TO PLAY MOM!!!!” and because I was forcing him into this physically exhausting schedule, I found that he was having a hard time cooperating due to being on this tight schedule as a kid. All of these things are good..all of these things help him! I was wanting to do 1 thing during the week and that was Bible Study which I brought my 2 kids at the time along and each week it was a battle, which I shed tears over. Dang it! I wanted to be there, I needed to be there, but it was HARRRRD!

We had just come off of a heavy last few months schedule wise and during that time I was walking with my friend (I was 7.5 months pregnant with my 3^rd baby) and just said over and over how I hated my days...I hated my schedule! None of it is what I want to be doing with my kids! I just want everything to STOP so I can start fresh. I have this idea of what kind of mom I want to be, and its not happening... I am in the car bopping all over town for one kid because everyone is suggesting this is what I “should” be doing(mind you, no ones fault but my own, trying to do what is right) neither kid getting the attention I needed to give them….So here I was a mess…

My dear friend was willing to look through my schedule with me, and encouraged me to present each of those things to the Lord. She said “He will show you what your should do friend, we can talk through it, but I can’t tell you whats best, God will show you”

Time of Rest

   Very shortly after this time, the Lord helped me with my decision...My husband who has struggled with back issues for nearly 10 years began to quickly decline...my 33 year old husband who is my teammate now suddenly left crawling on the floor..using a cane.. leaving me to care for our kids..lift my 5 yr old..run after my 3 yr old all while pregnant....and ultimately on October 18^th 2015 writhing around on my floor with intolerable pain and admitted in the hospital which led to an emergency back surgery later that week. We were forced in to rest….one week in the hospital and one week at home..I still took levi to therapies and school.. had to let go of a Disney trip we had planned on October 24^th. We thought...wow..we needed this time to not do anything..to rest..re group..re focus.

   His surgery was a breeze...even the recovery was nearly painless thankfully but the dr would not let him return to work for the full 2 weeks (and let me say that was a struggle for him!!) But in it we were resting, and abiding and felt like this must be the break we needed...it was hard because mike could only lift 5 lbs...and both kids well exceeded that lol. On the eve of mike going back to work, some sweet friends from church asked if they could help us with some things around the house..yard work..ect. So they did and it was such a help as he could still not lift or bend. Before they left they asked if there was anything else they could do? And I almost didn’t ask but said..”do you mind getting the crib down from the attic?” knowing that it wouldn’t be in mikes weight capacity for quite some time..so they got it down along with some other baby things and set it in the baby room for me.

   The next morning, 5 am...Lennox flips my lights on for WHO KNOWS WHAT REASON lol and so it startles me and I fly out of bed and as I got on my feet, I realized that my water broke (but,maybe pee?because you never know friends lol) at 32 weeks I was not ready for this and thought..surely this couldn’t be true….Mike is getting ready for work eager to get back, and at 6:30am I say..”honey….there is a chance my water broke, but maybe I just peed (lol sorry but you get it mama’s) go ahead to work...I’ll call you if I need something, I’m going to try to go to bible study this morning” (heheh I am funny….) He was reluctant to go, but I assured him to go ahead...20 min later…. “Hi honey..i know you just got there..i guess I should maybe go to the hospital… sorrr-eeeey!!

So there I went to the hospital and sure enough..water broke..but not in labor...butttt that meant I had to stay there until the baby was born…. You know..live in the hospital. Fun timmmmeees and lots of stories lol!! I was blessed with amazing people who basically took over my home, as now mike was home with the kids, not able to lift them or bend, and my job was to hold off labor for 2 weeks so that this sweet baby could have a little better start. So there we were again….forced in to rest..abiding..trusting Gods provisions (and he DID provide abundantly!!)I tried to keep school going for Levi, and then I realized..what am I doing. This is preschool! And I’m trying to figure out from my hospital bed how to get him there lol. Stop it right now!

I was able to lay there with peace in the way God was caring for us and leading us. November 17^th Hazel Maren was born at 4lbs without any health issues...she had to go through preemie protocol in the NICU which kept us in the hospital until November 27^th. We are thankful for all the precautions we took to keep her healthy but were so glad to get home!!! PLEASE LET US BE HOME!!! NO MORE HOSPITALS!! LOL

However we were advised now we needed to “lay low” with her until at least after the holidays..no family events..no church...dont go anywhere with her as newborns are already susceptible to so much and then a preemie is more fragile. Thats cool….Lol

So here is the thing. We were forced in to rest!!!!! And you know what, in the rest we had confidence and peace in the Lord. It was an awesome time. Nearly 4 months of not doing anything!! Woah man. I was stir crazy,but doing ok!!

Heres what happened. I had more time with my family than EVER before. We were together, there were games we played and books we read and behaviors we worked out and lots and lots of the boys playing and getting a long! It was amazing! So here I was getting ready for Levi’s school to start again, and the recommendation was that he would move to 4 days this semester... and the decision was easy. School. It was so good! It was so fun! His teachers were awesome! BUT I needed to have some time with the boys to cultivate things that were an expectation in OUR home..character training takes time, obedience, sharing, chores, my goodness self care for Levi (man did I see progress in dressing while we were home!!) sometimes it requires be home for a little bit.. I saw changes that were big. I could see that if I didnt’ stop now and work on these things and keep up the momentum I would see my 6 yr old off to school and have missed some great years of building a foundation. NOT THAT ITS IMPOSSIBLE, but everything in our house takes a while, and I knew for us, something would go on the back burner…

So step 1 was not finishing preschool at the beloved special needs school in our area.

Then step 2 was deciding what was next for us? The Lord had put it on Mike and my heart equally that we needed to spend more time on this and felt that homeschooling was important for us at this time..

So the emails started coming for kindergarten round up….TEMPTING.

When many people ask Levi where he is going to school..I had this question of oh man is this right??

Bring all things to the Lord…

When the school called and said “we haven’t seen your registration for Levi for kindergarten this year we just wanted to get you signed up” I was tempted to say “Ok, yes, lets do that...everyone is ready for him, my life with 3 is more of a challenge, this will be easier” but I did NOT. With confidence I was able to say “thank you so much, we have decided to keep teach Levi at home this year” Confidence because I have prayed, and my husband has prayed..and we have seen that this is right for us right now.

We have had so many decisions as parents in a short time, ones that are life changing! The Lord has always given me wisdom when I have asked, I don’t know what I am doing! I cry to Him, I long for the easy road... But the Lord has always shown me what to do.

James 1:5 If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you.
Proverbs 2:6 For the LORD gives wisdom; from his mouth come knowledge and understanding.

I sure want whats best for Levi and all of my kids. Of course I care about socialization lol (hello, if you know me you KNOW I care about that lol) But more importantly, I am raising people. I still need to obey God in the conviction of training up my children in the way they should go, EVEN THOUGH one has special needs..EVEN THOUGH its Hard.

2 peter 1:3 His divine power has given us everything we need for a godly life through our knowledge of him who called us by his own glory and goodness.

So we began homeschooling this year, we started slow in the summer and now have officially had 2 full weeks. I am so thankful. It is what I was missing. The structure it has given us, the way that I can see the areas I need to focus on with each child and get the opportunity to help them feel success even if its not done the usual way. Thankful for the laying down of expectations,for intentional parenting instead of being lead by a schedule and others and the freedom it has given me to be the mom I have desired to be for 6 years. (I can’t say I am there, but I’m getting a glimpse)We are doing therapies, we are doing I know that when Levi is faced with a big surgery in January, I can be the one to help him with new personal care and become confident in a private setting as he learns instead of asking the school nurse. This is what God has shown us for this year.

Sometime last week I was faced with a moment I was not ready for and it was someone who let me know they were in disagreement for my decision. That Levi would be much better off in the school set up for special needs. It shook me! I wasn't ready for opposition.  I shared my conversation with my husband that evening and he reminded me of the conviction we had about it and that I need to remember WHY we are doing this. So again through asking God, and saying “should I even be doing this?" and being insecure.. (one week into it already) and God gently reminded me of how He had already answered me when I asked an this whole story came to mind….So I write this as a reminder to my self of Gods direction for our family in this season, to stop picking up the past and start walking in Gods provisions. Accepting it. Trusting His plan.

In closing...before this season I was doing a study about the isrealites in the dessert the fled from Egypt. One lesson was on how God directly provided food for them that was called Manna. The thing about manna was that is was there every morning for them..they had to collect it, and they could only have enough for that day. IF they took extra it would go bad. It was there though just what they needed..and YET they complained about not having anything to eat. I love the timing of this lesson. How often I want the easier answer when the provision is right there. God is faithful.

"God Bless You"

Well, its been so long since I have have written in this blog, and although there is a life time of stories missing from then until now, i am moved to write today.

Today seems like summer because, well it is 52 degrees today!!! and although the rain is threatening we are going to do everything we can to enjoy this beautiful day!

 So I have to be honest with you that each day I am struck by fear over so many things as most moms I am sure could relate to. Right now my main fears is how to go somewhere with 3 small children. I know you mommas with several little ones can relate. Right now we have a 16 week old nursing baby, 1 potty training 3 year old, and a 5 year old with physical  disabilities. I have gotten wise to the fact that I should limit my trips to only a few times a week to help myself out, but I have to admit, the fear and quite frankly *anxiety* of leaving the house does a good job of keeping me home. Now, I have found contentment in this season of life I am in, however..sometimes I need to get out, and you know what, i have got to figure out how to do this!! No matter how prepared we are, there is always an unexpected thing that will happen right?...(like when you are on your last diaper and someone gets diarrhea in indianapolis)

One of our favorite daytime pastimes is neighborhood walks.We are blessed to live close by my mom, but not extremely close..(I need to find out for sure but I believe its just under a mile). In the years past, the boys have enjoyed our beautiful double jogging stroller as we go see grandma, but adding an extra baby, and children getting bigger by the minute brings some new challenges this year to our walking fun. This morning Levi asked if we could walk to grandmas, so I think, YES I want to so much, the weather is warm, we need to get out...So i go through the things we need..
I think maybe Levi would use his brand new wheelchair, allowing Lennox and Hazel to ride in the stroller? That seems like the easiest way to tackle this outing? 
But Levi says, "mom, I really want to walk with my walker to grandmas house today! Well, this is good news,because he's pretty motivated to exercise today, and any time that happens, we should really go with it because he needs to keep moving! 
My internal agony begins as I think about how this will go, moms can become such fortune tellers ..."are you sure you dont want to use your wheelchair? its such a long way honey?"     "I can do it mom" he assures me.

Ok.
We are doing this.
1 kid potty training..
1 newborn who eats a lot....
come on everyone..lets do this!
So here we go =) 

I have grieved the mom getting exercise part of my walks because the pace is quite different, but its ok! We found many many many sticks, leaves, cigarette butts...old newspapers.. you name it, we find it and collect it!


A little down the way we meet a neighbor named Linda, she came out of her house to see this amazing sight of what must look like the circus coming to town...(My big double stroller new baby and boy, led by a little boy in his walker, one foot in front of the other..) She greeted us with much love and support for her brand new friend Levi. I could tell she hardly knew what to say to us, but wanted to show her support in our lives and cheer on our journey. "God bless you" she says, as we walk away...

Later on down the road we run into a friend who's walking with her baby, we laugh about getting out of the house, she says "your so brave to take the 3 on a walk"..yet both of us know that it is so important to get out of the house with little ones...

our walk is long now... with frequent "breaks" I know whats coming soon....but we are soooo close to grandma's house!


I encourage Levi that if we would like to hop in the stroller he can, I would be glad to push him...after several attempts to give him a break he gives in to his sore legs and says, "ok mom, i could use the break". 

We stop, and preform a miraculous transition. 

As an experienced momma I now am, i have prepared and thought through this moment...So thankfully I received an amazing Tula baby carrier to wear Hazel for a gift to make my life possible. 
Hazel gets wrapped up and strapped on momma, Levi hops in the stroller, and we fold up the walker and I am figuring out how to hold it while we walk, as its been a few months since ive mastered the technique. 

Out from the home we are parked in front of comes a sweet older woman who says, "do you need some help?" in which i reply "well, you are sweet to offer, but I think we actually may have it figured out now!" along with a chuckle.. She has a bag of homemade cookies from her freezer and says hi to the kids and the boys ooh and ahh over a bag of cookies, and the boys said "we are going to our grandmas house" she tells them she is called "Grandma Cookie" lol and they liked that. "Can i at least drive the walker to your moms house for you?" it was tempting but my destination was so close and at this point we were ok. She touched my arm and looked at me and said "may God bless you sweetie" . We thanked her for her kindness and we made it to our destination shortly after.

I tell you this story because as I was walking, I was overwhelmed at the thought of "may God bless you" and realizing that he already HAS blessed me. 
We had so much fun on our long nature walk/ transformer/adventure to grandmas house..and although it is much like the circus coming to town every where we go, I am always in awe of God's kindness of how he shows me what to do and how to manage my life. Life is hard friends. For all of us! 
Just like you, I have days where I cry and think, "how am i going to do this Lord?" and you know what, many times is over walking to grandmas house, or running an errand as silly as that sounds...

Many people have pity or compassion as they watch us in public which is kind (and also a bit overwhelming lol), and i must say I never imagined my life would be such a spectacle. But my point is that I often have pity on myself and am tired and frustrated, but the Lord is always kind to me, he gives me wisdom for my life! He provides people in my life who have offered help and encouragement every step of the way. I am cared for and loved and God DOES bless me so much!
  Fear can cripple me, its fear over getting stuck on the sidewalk far from home, or the one last diaper...But I was reminded of this verse today:

Isaiah 41:10
So do not fear, for I am with you;
    do not be dismayed, for I am your God.
I will strengthen you and help you;
    I will uphold you with my righteous right hand.



So here I am on the other end of my major accomplishment of the day thinking, I don't always know how it will work out, but I have always been overwhelmed by God's blessing, and the way he has helped me move forward in life. Even in the simple things.

Adaptive Bike Giveaway!

Levi is in a really cool contest that is giving away adaptive bikes to special needs children! How it works is, you can click on the link below his picture to vote for him to win. You can share this link to others that would be able to vote, but its one vote per email address. It takes just a second to click on the link and vote!

Its a great contest because it gives many people the chance to win based on how many bikes are donated! So if you are inclined to donate to help them buy more bikes to give out, it gives every child more chances to win. Right now each child is signed up for a choice bike, in each category you can win by top votes, and random selection.  Only kids with over 50 votes win and currently there are only 20 kids eligible and Levi is in 5th place!  Lets see if we can win this! wouldn't it be so cool??

                                         https://www.friendshipcircle.org/bikes/2015/02/levi-b/

update on levi

What a week :) Well I have had many sweet friends asking about Levi, and I a sitting here having a moment to reflect on the series of events that went on this weekend, that are now for the most part..gone! The doctors and us decided to hold off of the final test which involved medication because the symptoms basically stopped Monday. The factors we are still checking will be the frequent gagging,the occasional headaches,occasional neck pain,and a change in gait this summer...so Mri is scheduled on March 3rd to still check his spinal cord for tethering..so that is still a concern..but the emergency of the shunt seems to be not a concern..

 Its puzzling to me, but I was thinking this morning, do I believe that prayers work? Am I quick to just say, "huh, guess it wasn't anything after all.."  the things I know are although it could have been a flu..it seemed to mimic the exact situation that happened last shunt malfunction and got more aggressive and frequent issues..I also know that in the past,Neuro is not quick to see us,and try to rule out many things before we make the trip ...so I was surprised by how quickly she was concerned . But here we are today and Levi is doing fantastically. He went back to school Tuesday and has been doing great this week!

So we are left with the question of the mystery...but I thank God for healing Levi of whatever was going on last week,renewing his strength, and many many people praying for him.

a little explanation of whats going on ;)

First of all, I am continuously grateful for the quick response to prayer that we are blessed with whenever there has been a need, especially in regards to Levi's health. God has blessed us with a tremendous community of support at this time in our lives and it is so wonderful. I am thankful that even with just a little explanation, I can count on prayers and concern for the situation we are going through.

I thought I would take a second this morning to be more specific about some things with Levi, as it seems like "where did this all come from all of the sudden??"

Something that I have learned as Levi's momma is that there are things I am always "tracking" which is like a blessing and a curse type of thing....as you can imagine to a little boy when mom is ALWAYS asking "are you feeling ok buddy?" he is kinda a the point where he is like "I'm FINE mom" lol...Sorry little dude I just cant help it ;)

We have been fortunate the from the time Levi has been able to talk well at the age of 15 months ish he's always told us when something doesnt feel right (so obviously I really dont need to ask all the time lol) so for example he would tell me his head hurt when he was 2 , and I would track it because I thought, this poor 2 year old expressing this so often is strange...so after my season of tracking and symptoms getting worse and dr's saying "he probably can't tell you that at his age" lol we wound up with a new shunt for levi.

So something that I know even beyond the need of always a new shunt are things like levi gets headaches here and there...but he's also been very healthy in all other ways, really never had the flu or been sick past a runny nose praise the Lord.  

The last few weeks he's been a little off with a few things that you could say..hmm could be normal kid behavior..but then when you see patterns then you start to wonder whats up..

-Falling a sleep on bus every day for the last 2 weeks (only a short trip) and again, so not a big deal
-telling me his neck hurt a few times a week
-telling me his head hurt a few time a week
-gagging (which I was thinking, oh maybe from a runny nose)

----
-Then more frequency
-head/neck pain daily...
-more frequent gagging
-crying about everything

At this time I started giving him some doses of myralax because he can
occasionally get constipated and that can interfere with shunt... so i thought
I would make sure that wanst the issue

----
then by the end of this week it turned into
-throwing up whenever he would cry,cough,go from laying to upward
-head and neck pain more intense

Then the myralax kicked in which was in a pretty "powerful way" lol
So then i think he got dehydrated pretty quickly
which is why then he wasnt keeping things in his body...
and in the meantime he was just very still and had tired

This a list copied from a website for signs of a shunt problem...

• Headache. This is a headache that increases and gets worse over time.
• Throwing up (vomiting) without cause.
• Feeling more sleepy than normal.
• Irritability.
• Babies or young children who cannot speak may become increasingly fussy.
• Young children who can speak may become increasingly whiny, grouchy, or impatient.
• In infants less than 1 year of age, the head may start to get bigger.
• Personality change.
• Vision change. This may be blurry vision, double vision, or loss of vision.
• Swelling of the skin that runs along the VP shunt path.
• A bulging, soft spot on your child's head.
• High-pitched crying.
• Feeding problems or refusing to eat.

So as you can see this was pretty standard  shunt paranoia for me...and the added myralax although was probably a good move, added the dehydration (in my opinion thats what it was anyways)

So had the CT scan yesterday and shunt series Xray

Gloria said that the ventricles seem to be at an ok size, but doesnt mean that its not shunt entirely..

So we are going to start a medication 3 days on, 3 days off, 3 days on...this medicine will produce a little bit less cerebral spinal fluid on his brain and see how he feels and if the days are quite different when on vs off we will make a magnetic adjustment to the setting on his shunt which is ideal because it most likely wouldn't be a surgery but I suppose it still could be also...

BUT

The other information of

Neck pain, headaches, gagging, and the change in his gait this summer also all points to something going on with a possible tethering of the spinal cord...where scar tissue is pulling down/attatching on the spine,nerves causing change in function or pulling the spinal cord down which puts pressure on other things including brain...

So we will have an MRI in the next few weeks of his entire spine to check this out...and my gut tells me this is what it is ,and same with the Dr.... Levi had a spinal cord tethering when he was 10 months old because its a good surgery to do when you do a Chiari decompression which he was also having...and unfortunately with spina bifida or possibly other spinal surgeries (I believe) you may have repeat tethering..... probably at the sites that he has had a surgery in the past...so it would be most likely on his neck...or lower back.

The one he had when he was young was at his lower back...I'm concerned this one is at his neck but I dont know so I will try not to worry. But obviously things become more dangerous when your dealing with the brain/spine area..so we can pray about that! We have an amazing Neourosurgeon Dr. boaz...he is just fully confident but its also a very delicate procedure.

So there you have it.

We just dont know whats up yet....BUT the good thing is that he's been feeling a little better and hasn't thrown up since sunday...his tummy is still hurting, and he is still gagging and some headaches,and seeming to cry about more than usual... but I feel like there were some things in the mix of all of that, that made it confusing what was what.

In the meantime..we are doing ok! He is generally doing just fine now, playing, going to go back to school today...but he's on the radar for something and we are working on figuring it out.

if I were to say best scenario...maybe this medication works and takes away the headaches and we magnetically adjust the setting on shunt..at least he would feel a little better...I think thats the best case but it has to be trial and error first.

Specific prayers

No tethering Mri doesnt show anything major

that he continues to eat and drink

overall for his health

also we are just in a quite busy season for our family, and also have a few things

ahead. So just wisdom about all of that and balance with all we are dealing with.

We are thankful that although as we look back at this week which also had several other non levi related circumstances, we can praise God that we had a peaceful week and many sweet moments with each other, it was busy but we never came unglued.  I'm so thankful for that provision!!

Thank you friends

Bethany (and Mike too ;)

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.