End of Summer 2011

Practice What You Preach

Jaden 16 months
Hydrocephalus and Stroke Survivor

This is hard to say, summer is coming to a rapid close faster than any of us would like. Before we know it there will be turkey in the oven and football on the tube. Because this is National Hydrocephalus Awareness Month I wanted to give an update on our little man. There will surely be randomness, humor and truth.

            The Jaden Bear



Micah 5 years

This little man of ours just keeps working hard to overcome any challenges in his life. We have been to Denver to Children’s Hospital twice this summer for checkups. The new MRI shows an amazing difference in the reduction of fluid on his brain, which is so much better than we could have hoped for. Jaden can now sit unsupported and play on the floor, without mommy freaking out about him free falling backwards and hitting his shunt. Jaden has also learned he can roll all around the house. When he first started he could only roll one way, pushing off with his good hand and over the stroke affected side, becoming stuck when he would roll into the couch or wall. Now he is able to push with his legs and scoot around until he can keep the rolling going! He is also working on sitting and scooting around the floor. We have been working on our standing skills and he is able to stand with support in front of the couch for about 2 or 3 minutes. As far as talking goes, I think it is the most amazing sound to hear him say MaMa or DaDa! He can say about 6-8 words and tons of babbling. We have also learned how to peek-a-boo, my goal is to have him use both hands, but right now he just uses his “good” hand, good hand or not I am just happy he can do it! We have almost made it one year surgery free, which is a milestone I pray we get to cross and add to. We had a visit from our vision therapist from Denver and she tested Jaden’s eyes again. He is 20/180 in his right eye. We also believe he may have slice or field or area in his right eye where he is unable to see from. So he tries to lean his head side to side to see around the slice.

Borderline

With Micah starting kindergarten this year, I have seen firsthand just how harsh and critical other parents are. I am not quite sure; maybe I am missing something here. I believe we all share common goals wealth, health, education and yeah this one blows me away everyday- fairness. I believe we are parents, regardless of medical diagnosis, looks and life choices we are so critical of each other. Acceptance is something we try to teach and preach, yet when it comes down to it we lead by example and that example is to be critical of different than and I use this loosely “normal”.  I am very proud of my son for being so caring to a little boy who is in his class and has some muscle tone issues and even when this little boy could not control his legs and knocked my son over, Micah just said its OK, sometimes your legs wobble. Very proud of my son and accepting someone for whom they are and being his friend no matter what. I wish adults would take his advice and be more accepting of others by not judging other peoples situations. There is such a hush of quite that keeps disability and medical issues off conversation, people skirt around me for fear of asking the wrong question. We have accepted our life and it is OK to bring these issues to light and ask questions, become educated about something new. It is OK to ask, there is no right or wrong question. Just be open!

Medical

Left Picture 10-13-10 White area is fluid.
Right 6-15-11 Looking Amazing!

For the most part Jaden has been doing very well, making small but steady progress with physical therapy and occupational therapy, learning new things and overall doing amazing! We had placed an application to Shriner’s Hospital for orthopedic care and we found out today we have been accepted. This is huge news for our family! Shriner’s is amazing because they take Jaden on and regardless of our income, insurance or pretty much any other factor Jaden will have orthopedic care and muscle rehabilitation services until he turns 18. I feel so happy that we have been blessed to have this gift of wonderful care given to us. We will have to travel back and forth to Salt Lake City Utah for care, but the care and potential it offers Jaden is worth it 100 times over! We will still be making trips back to Denver every 6 months for follows ups with Neurosurgery, Neurology, Audiology and Muscle Rehab there as well.

Just Thankful

It is sometimes hard to see Jaden struggle so much to do things that come with such ease and are such gifts to other children, including Micah. Things that until I had Jaden I had taken for granted myself. I can not help but think of how glad I am for parents who never have to feel such struggle for their children. Things in life we take for granted, holding a cup, clapping our hands simple things overall. I know he can do whatever he wants to do in life, I believe in him so much more than he may believe in himself. Micah is such a good teacher and motivator for Jaden because Jaden wants to be doing what brother is doing. When I have a bad day or feel down, I keep myself in check by thinking about Jaden. How hard it must be to be stuck in a body that only half works. I think about other parents who have children who have much more complicated medical issues than Jaden. What it comes down to is that I am so very thankful for all he is able to do and all the things I know he will be able to learn how to do. I am thankful for each day with my children because it is a gift not an expectation. I also feel so much closer to parents who struggle daily with much harder situations than ours. I am apprehensive of the challenges we face and encouraged by the shear courage and strength of my kids.  

Love and Health,

Micah and Jaden's Mommy

Too Soon June

Is It That Time Already?

The time seems to be flying by these days. Moving with such speed, we are coming close to our three month trip to Denver. I just wanted to give a pre-trip update about how and where things are now.

Micah Bear

So this little man of mine blew me away yet again with his braveness. I wanted to try doing the MRI without sedation to see if he could do it. So for the week before, we talked about the doughnut camera. And how it was just like what happened to brother and how it was safe. He did so well, he even fell asleep!

So the results of the MRI say that Micah has what’s called a tiny 5^th ventricle. There is no need for medical intervention at this time. And his brain looks nothing like Jaden’s, which I am thrilled with. Knowing things look good up there, makes me feel so much better about not feeling like we missed something.

Jaden Boo

Jaden had his year birthday, well child check up, eye doctor check up, orthopedic 1^st appointment and continued PT, OT and vision therapy. His birthday was a day I remember praying I would celebrate with him. So to have him be doing so awesome six months later is a very rewarding feeling. Well child info I updated last post, so I’ll skip the review and stick to the new. Jaden did see the eye doctor for a one year check. All seems to be doing well, still CVI (cortical vision impairment) but no needed intervention and yearly checkups from now on; that is unless something comes up that I notice has changed. The Orthopedic, so because Jaden has had a stroke his bones are trying to grow and because his muscles are always tight, on the stroke affected side there can become hip and foot issues. So Jaden’s hips will need to be followed yearly right now, and more often as he grows. There is about a five point difference on the scale right now with his hips. PT is going well; I do feel like Jaden wants to get moving. We are really working on weight bearing on the effected side. He is working on being able to push a ball down the slide on the therapy gym. He has started being able to do his own sort of constraint therapy. He will not let us tuck his arm into his shirt much these days, so when we try to, he becomes fussy and when we let him have it freely, he will still work to move the ball with the effected side and not the “good” side. Jaden is also now on the Medicaid Waiver list here in Colorado. Being able to use just Jaden’s income will make him able to have medical. The wait list is 2 years long. But because the stroke and hydro are lifelong medical issues, it will mean a lot of help for Roy and I.  

We will be going to Denver in June so I will give updates from the trip once we get home and settled.

Up and Coming

We just discovered that my mother has breast cancer. Long and short she will be starting treatment on the 27^th of this month. This has shaken my faith that everything happens for a reason. But this is not the first time breast cancer has touched our lives, so I know we can overcome this challenges like many laid before us. It is amazing the power of love and faith in the outcome of a medical situation.

Roy and I are still working hard at school. It makes it stressful now because Roy started back after an almost 6 month break after getting his AA. It is interesting how we manage to get homework done and still have hair left after a day filled with our duties.

I am looking to the future with bitter-sweet feelings. I know the pain I will feel, the feeling of not being able to help enough the people I love. I also embrace the feelings of love, faith and the positive outcome I now will be waiting for us when this challenge is behind us. I am so very thankful for what I have in my life, my kids are amazing, life changing, inspiring and truly are my everything.

I also wanted to share with you all the photo of Jaden’s brain from October of 2010. All the white area you see around the outside is fluid.

Mid-June be keeping an eye out for an update on things. Thanks for your support and love.

Love and Health,

Micah and Jaden’s Mommy

May Flowers

Standing in My Mind

There is so much I see when I am standing in my mind. Looking around I sometimes wonder how my life got from where I came from to where I am now. Funny how kids shape us into the person we are meant to be.

Choices

We have been thinking about moving to be closer to the special medical providers Jaden needs to see often.  The fact that he can get sick at any time and need a shunt revision, knowing that he could have another stroke at anytime is truly heart stopping for me.  I don’t know how prepared I m to handle the next 20 years of stress. I also want things like roots and being close to family for my boys. This is something I never had growing up, it is very important to me. I believe we have made the right choice, not the easy one- just the best choice for right now. I don’t believe there is a right or wrong, just best. I also know zip codes don’t change the morals we’re raised with.  

Jaden Man

So today we went for his 1 year well child visit to our PCP. Jaden is 23 lbs, 281/2 inches long and head circumference is 47 cm, where it has been since his first shunt placement on 10-13-2010. So this is all very good news. We don’t want to see much head growth until he is about 18 months. I am concerned about his hip development, with having so much high tone on his right side and leg. We are going to see an orthopedic doctor here in Durango and when we go up to TCH in June, we will see pediatric orthopedic doctor. Just to be sure we are on the right path. I am very stressed about the next trip. This is going to be his first MRI since shunt placement, scared to see how things are doing after 6 months.

Micah’s Journey

The more I learn and become educated about Hydro, the more I see things in Micah that make me think we missed something with him. When he was 4 months old, we were in Denver for him because of head size and throwing up. There was never an MRI done at the time. Knowing now what I do with Jaden, I feel like I should have known to do more. As Micah grows, things become more apparent to me concerning Hydro. So, we are going to have an MIR done soon to see what’s going on up there. I have this feeling in the pit of my stomach, I hope to god I am wrong, but I can’t rest until we know for sure the answer. I will update on this as soon as I know more information.

Next

Still working to get a support group started here. Hoping to have a name and meeting date within the next two weeks. Working on making the plans for Denver in June and bringing things together for a fund raiser; each of these things is like another full time job added on to my full time job and full time school. And with Roy being back in school also- it just intensifies the challenge.

I will be writing with much more of an untold story, everyday unfolding before my eyes.

Love and Health,

Jaden’s Mommy

April Showers

New News

I feel like I have so much to catch up on, so much happens so quickly these days. I am excited to be writing this up date. I am so hopeful about the future, yet harbor feelings of trepidation. I will update on the support group happenings, health, therapy, SSI and the big #1 coming up!

Support

Last week I flew to Denver to Children’s hospital for the first stroke support group meeting there.  I was out of my mind nervous for this meeting for a number of reasons. I have only ever been on a plane once in my life. So to make the trip by air was hard for me.  I never thought I would be excited to attend a support meeting for parents who have had a child that has suffered a stroke. I am not sure who needs who more, the child or the mother. Kids have a way of helping guide us into who we are meant to be.  The meeting went so well. I was happy to meet parents who are a few years out in dealing with the after effects. I am happy to have the support of the director of the Denver group for a meeting here in Durango; we need this so much, for so many reasons.  Meeting details are in the works right now, I am hoping to have a date in May because May is stroke awareness month.  

Health/Therapy

Overall Jaden has been doing awesome. Health is doing ok. He had pink eye, but with the proper drops, he is doing much better.  Getting ready for his one year well check! Therapy has been going well. We just had our 6 month IFSP (individual family service plan) review. It was hard looking back at the unrealistic goals we set- Just more reinforcement that Jaden is going to do everything on Jaden time! This time we set some really solid goals that I hope we can meet or exceed. If not, we try again.  We are really working on constraint therapy with him. It is amazing how well this works with him. I am so thankful that he is overall such a happy lil man! We just got a play gym with a ramp, slide and steps to work with on all aspects of therapy.  Truly amazing staff with PT and OT that teach us how to help Jaden!

SSI

So the deal with this is like most others- Jaden medically is disabled. However, we are over income by between $35 and $50 dollars each month to get any financial/insurance help here.  So that being said, we are now working on the Medicaid waiver list. I am hopeful about this, I know it may take a few years to get Jaden on, but once he is I will never have to stress if he will have insurance if something happens and it is needed.  So I am not holding my breath, but at the same time I am hopeful that this will work out for the best.

The Big #1

I am shocked and thrilled at the same time that this day has come!  The last year has felt like 5 years for me. We as a family have overcome so much hardship while showing so much strength.  Jaden being here has changed our lives and the lives of our family. Jaden is such an amazing person, just seeing his smile makes me want to work harder!  I am excited to celebrate his first year; it feels like an accomplishment for our family!

Coming Together

Each day is wrapped with daily routines, daily motions- seemingly so slow yet flying by.  Daddy and I are still working hard with school, sticking to it! Micah’s exciting news is that he has become part of the Tigger’s soccer team! He did so great and I think he really enjoyed it! He is also fast approaching the last month of preschool! I am so proud of him; he works really hard and is a great big brother to Jaden!  Each day I am increasingly thankful for my family.

The Next Update

I will be updating more information about the birthday boy and lots more information about the support group details as they come along. I more inspired to make a different here now that I have attended a meeting and know the education, emotional power and positivity it holds for each person involved; providers, parents, family and the community.

Love and Health,

Jaden and Micah’s Mommy

Spring Update

The Denver Adventure

So our trip started off trying to beat the unpredictable snow that spring in Colorado brings. On our way over a mountain pass, we came onto the scene of an overturned semi truck. We stopped and helped the driver and passenger. Roy cut her seat belt, broke the window and pulled her out. Another passer by stopped and helped pull the husband out of the crushed cab, both survived.  So needless to say this started our trip out with a shakeup.

Trip:

We arrived in Denver, tried and cramped. Ready to rest and prepare. Jaden and I hung out in our make sift home for a week, yeah casa Best Western.  Daddy and Micah went down for a swim, dinner and bed for us all. We awake 2 hours later to the sound of Micah crashing to the floor.  Nothing more than thud! No crying even, daddy scoops him up and does a sleepy check over. Seemingly fine, we lay down. Micah whines about his toe, we hit the lights, pull the footie jimmies off and find a bloody mess of a toe. Freaked out, child hurt, not at home and snowing like crazy outside; I throw on shoes and run out of the hotel with Micah in tote, wrapped in a blanket and daddy left standing in the room, all the while a peacefully sleeping Jaden never knows the difference.  No stitches for the toe, needless to say no more swimming either.  One unplanned visit to Children’s Hospital down three more planned to go.

Jaden:

So Jaden’s news is good. Neurosurgery, Neurology and Muscle Rehabilitation all agree slow progress for Jaden.  Our message to come home is keep doing what we are doing!   After our next three moth visit, we are cleared to move visits to every 6 months, god willing Jaden keeps making slow progress.  On the therapy front, we have turned a new page so to speak. We have not given up on crawling and rolling but it is time that we start working on walking, slowly working on learning how to stand up, so with new information and techniques we progress slowly. 

Networking:

After appearing in the news paper, I have been working full steam ahead towards organizing a support group here in Durango. The feedback I have gotten has been awesome.  I feel like I have another full time job speaking with other parents and networking with people whose lives have been touched in similar ways. 

Mommy’s Fear:

The fear of knowing everyday that my child could become sick and need a shunt revision has been hitting me hard these last few weeks. I feel like I can never let go and just feel like everything is ok. I feel like if I do, something is going to happen to Jaden.  How do we as parents deal with this stress every day?

Medical:

And here we are to one of the largest catch 22’s I have come across yet.  Jaden was found medically eligible for SSI benefits. The catch? We are over income to get any help from this. However I am looking at this in a positive way. When Jaden had RSV in February, we each missed a week of work. This puts us under the income cap for one month, allowing them to pay a small amount. The awesome part of this is because we did qualify for this- Jaden is Medicaid eligible. In a rushed conversation with a government case worker, we were also disqualified because for some reason it matters how much money we have in our bank account on the last day of the month.  Well it just so happens that Roy gets paid once a month and I will give you three guesses at which day it posts and the first two don’t count.  So, the money would be helpful, but having the secondary insurance is HUGE for us! Help is help and I am grateful.

I will be posting updates soon, Thanks for taking time to read our story and remember never to take the simple things in life for granted.

Love and Health,

Jaden’s Mommy

Paper

http://www.durangoherald.com/article/20110314/LIFESTYLE04/703149990/Looking-for-answers

Spring 2011

Greetings All,

Struggles-

Being the parents of a child with such involved and long-term medical needs is not easy. I must say now that we are coming close to Jaden’s first birthday, I feel as if I am only beginning to grasp that Hydrocephalus will always be in our life. The words, no cure are quite staggering. Jaden is recovering from RSV (respiratory syncytial virus) and a double ear infection. As I try to look into his future, I see so much unknown. So much is yet to be discovered with Jaden. Yet I find so much will power in someone who has such an old soul.  

Insurance-

If it’s not one thing it’s another. Because we are a two income family, and Roy works for a State agency- who contributes 60% monthly to our insurance plan, we are unable to apply for CHP+. Regardless of the fact that we qualify on income and all other guidelines and of course because we do have two incomes, Medicaid is out of the question. In just one year with Jaden’s medical bills, we have spent out-of-pocket $9,000+. I am very grateful for the $100,000 insurance has paid. However, it feels like a financial gerbil ball- we keep rolling and the debit keeps coming. Given the lifetime diagnosis of Jaden’s medical condition, I fear a life full of the stress of the last year.

The Trip-

We will be in Denver for follow-up appointments in March. Jaden will see his Neurosurgeon, Neurologist, and Muscle Rehabilitation Specialist and will also be going to the Anchor Center for the Blind. I am feeling nervous about what kind of new information we will find. Also interested to find out more about Botox treatments for his arm’s rehab from the stroke- this is where the nerves start for me- it’s an injection.... more pain. We’ll see what comes of it. I am also excited to visit the Anchor Center. I believe this is a great place for us to learn more about Jaden’s vision impairment. I will post their website.

The Positive-

The latest up sides include Jaden rolling from his tummy to his back for the first time today (2-23-11) and he has become an unsupported sitter (most of the timeJ). Jaden got approved for a custom hand brace through his PT! I am excited to have our weekly session and see how it fits! We hope it improves his ability to open and close his right hand with time. We are also excited to attend the 2011 Hydro walk in Denver this year. I hope it is a place to learn, share and network with so many devoted and inspirational people.

I will update in March after we make our Denver trip.

Please have a look at the websites I have shared with you.  

Love and Health,

Jaden’s Mommy

http://anchorcenter.org/

Great information page provides great links to other wonderful pages with related information.

http://www.ninds.nih.gov/disorders/hydrocephalus/hydrocephalus.htm