Thursday, April 3, 2014
Wednesday, February 19, 2014
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!
Wednesday, December 11, 2013
Basking in Blessings
Well I always tend to do this, not really because of the idea of Christmas, and end of the year how people reflect...But since we have boys with birthdays at the end of the year it gives me a great time to reflect on our life and the many blessings around us ( and I start getting sappy this time of year reminiscing ;)
First of all, thank you so much for caring to stay updated with our family..It is so wild to me that you all have stuck with us so long. It means so much to know if we need prayers you are all here, and it just is so amazing to know we are not on this journey alone!!
Levi just celebrated his 3rd birthday, and this was a big deal birthday!! First of all because apparently 3 yr olds love birthdays which is extremely fun! But also it is a graduation of sorts for him! For his first 3 years he has been doing first steps which is a program that does in home physical and occupational therapy and we have had 2 special ladies working with him all this time, 3 times a week. They have made a huge impact on his life and we have been so grateful for their hard work but also how they truly care for Levi! Its just remarkable. So now that he is 3 his therapy has changed...We are thankful to continue seeing his regular physical therapist aside from First Steps hopefully 2 times a week once we get insurance things figured out, but it will no longer be at our house (boo!) but he gets to continue swimming and land therapy.
In addition to that, this little guy started Preschool!?!?! Yes its true =) There is an amazing program at a preschool right down the street from us that is an integrated program which means that they have a normal class room but mix in a few kids with special needs. Levi has 6 kids in his class and 2 teachers and will also be seeing a physical therapist while he is at school. He is there 2 times a week for 3 hrs and has the option of riding the bus to and from, but mommy has a hard time with that for now ;) Their goal is to just have him in this program to teach him how to access his learning environment physically, and he shouldn't need to be in any special programs after this, except for help when needed! It was neat to go through the testing assessments and hear feedback on Levi. Its easy to see all the good things in your child, but means a lot when other see it too. He did a nice job, and the only thing they see he needs help with is his gross motor skills..(physically) and even at that he is doing well. He scored very high on things like speech and social. They decided to put him in an afternoon class that has 4 year olds to challenge him a little more =) So far its going well..he has been quiet at school, until yesterday when he finally seemed to be excited. He has cried a little bit each day which is pretty hard but he says "I'm ok mom, I can just be brave" AHHH that breaks my heart, but I am proud of him for working through it! His teachers are so kind, and really help him. It was a big step, but its important to think about how he can gain independence in life. There are lots of things he has a hard time doing in life physically and I love that they think of ways he can be independent, and its helped me think of ways to modify chores,dressing ect. so that he can feel a part of it.
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
He gives strength to the weary
and increases the power of the weak.
Even youths grow tired and weary,
and young men stumble and fall;
but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.







