I don't get to post on here often, mostly because our life can be a little chaotic at times.  Elly is growing in so many ways.  Still not walking yet, but we are hopefully. Last Friday she was measured for her second set of SMO Splints by SureStep.  It was kind of bittersweet, while I want Elly to have everything she needs to assist her in the beginning stages of walking I was also hoping that this would be the last device we needed for a while.  But it is my vow to everything that I can as a parent to help Elly grow and develop to best of her ability. 

The past month we have also had a few bowel problems, and Miralax was not working as it used to. After a brief evaluation at the Myelo Clinic a few weeks ago Elly was prescribed mini Enemeez.  We insert them anally once daily to soften her bowels.  It works pretty well, but I am concerned that she is going to become dependent on it, doing more harm than good.   I would really like to find an alternative natural remedy for her bowel problems, but have yet to find on.  I know that proper, well balanced diet is crucial to digestion, but there has to be something else I can do to help her move along.

After meeting with her Early On Physical Therapist today we were given an assignment.  Over the next few weeks we will be working on improving Elly's fine motor skills by incoorporating more structured play time using a Magna Doodle, puzzles, and shape sorters.  We will also encourage Eliana to gain more balance, by letting her hold onto a hulu hoop on one side while we hold the other.   We continue to encourage Elly to climb when at the park and put weight on her legs as much as possible. Honestly our house is beginning to look like an obstacle course, but it is all for the greater good.  In a couple of weeks we have an appointment to be evaluated by a Pediatric Physical Therapist and may have intensive therapy once a week if needed.

Overall I feel a lot more optimistic about the obstacles we face.  The only limitations to Elly's  success come from not doing anything at all.  

It is all For the Love of Elly, who stole my heart the day she was born.

Najeema Iman

We have come a long way in a year, but we still have miles to go.  Our current struggle comes from Elly's in frequent bowel movements.  Truth is they have always been irregular, but lately it seems like the Miralax that she takes  on a daily basis isn't cutting it and she has horrible rash that just isn't going away. 

I bit the bullet and called the "Bowel and Bladder department" at our local Children's hospital along with our Myelo Clinic and Urology.  To be honest the last couple of days I have kind of been in a little bit of panic mode, okay well not panic mode, but I really want to find out what the problem is.  I fear the catheter.  I know that it is a medical device that helps SB kiddos, but I just don't want have to deal with it.  Sometimes I fear the unknown, and expressing this seems like I am the worst parent in the world, but I want like any other parent  to know that my kiddo is going to be okay.  She's not sleeping great at night and add teething into the mix and you have a whole list of other problems. 

Other than the bowel problem, her legs seem to be a little stiff and one foot still turns out when she tries to take steps, sometimes even when she has her splints on.  We are thinking that she may need more intensive therapy to help her gain better control over the use of her hips. 

Elly is definitely not the most challenging Spina Bifida case, but it is sometimes difficult for me to deal with it, when my oldest daughter didn't have the challenges that Elly faces. She reached her milestones well before she was suppose too.  I know that every child is different, and develops different but this is still hard  for me.  I know that everything is going to be okay, and that everything happens for a reason.  The only way to look towards tommorrow is to be hopeful.

Najeema

Tuesday was Myelomeningocele Clinic day, which means that we see a whole lot of doctors while sitting in the same room for a few hours, and have several test to make sure that everything is alright.  Needless to say I am always apprehensive when we go to these appointments.  Though I know that her diagnosis won't change, there is always the chance that something in our lives could drastically change.  We may one day find that she needs a catheter, shunt revision, could suffer from tethered cord, or seizures.  There is so much that could happen, but I am going to focus on the good that is happening right now.

Our appointment yesterday went great. To date Elly has not had any shunt revision, he incision looks great, and has not suffered any developmental delays.  Though she is not able to walk yet, the Doctors anf physical therapist are optimistic that she will in the near future.   Yes, there's still the chance that she won't but I am choosing to look at this as a glass half full sort of situation.

Elly has SureStep SMO's (Supra Malleolar Orthosis) which helps to stabilize her ankles.  She has had them for about three months now, and along with her wide shoes that I picked  up from Payless they seem to give her the stability she needs.  After meeting with the physical therapist at DMC Children's Hospital, we decided that several times throughout the day Elly will cruise throughout the house without them so that she can start to gain more balance.  Which works out great for both of us since she takes  them of and makes it hard for mommy to find them.  They will probably have to be refitted in a few months, but seeing as the size of her feet have not really changed much, they are okay for now.

We love our clinic, heck we travel and extra hour and a half to get to our clinic, because over time you build relationships with the doctor's and nurse's that you see every couple of months.  Now that Elly is older I know that we may only see them once or twice a year, but the extra traveling is worth it.  One day we may have to use another clinic but we will definitely be staying there as long as possible. 

Note: If you want to know more about Spina Bifida please visit www.spinabifidaassociation.org.  To find other blogs like mine, get encouragement, find out global news about Spina Bifida, or find resources available visit facesofspinabifida.com .

Najeema

We made it through the first year

Copyright Justin McMahan 2012

Well one year ago today, Eliana Joy McMahan came into the world.    It has been a long year and its been just our immediate family going through most of this journey.  A lot of friendships/relationships that we have had in the past have kind of fallen to the side.  To be honest I don't blame anyone because until you are put into a situation like this it is hard to understand the challenges that come. There have been a lot of what-ifs, along with triumphs.  Eliana doesn't walk on her own yet, but she is progressing well.  We had our hopes up that she would  start walking by her first birthday, but every child with SB is different.

I love my Elly but to be honest, I have been so consumed with what was going on the past year that I have often neglected to take care of myself.  Now that we have made it through the first year, which I believe is the hardest, I feel like I can be more at ease.  Of course there is always that nagging feeling in the back of my mind that something can go wrong, things can change.  But I praise God that we haven't had to have any shunt revisions in the past year or any other surgeries for that matter. She is able to pull herself  up with the help of a stationary object (i.e. a couch, chair, or large toy), and so far we haven't experienced any developmental delays, which is another reason to thank God. We continue to participate in a research study with the University of Michigan  and I do believe that it has been beneficial to Eliana's motor skill development. 

It's been a long road. Quite a few trips to the emergancy, lots of appointments, and tons of at home visits but we made it. I know that our journey living with Spina Bifida, will have it's ups and downs but it is important for me as a mother to realize that her life isn't over.  There is nothing that she can not do.  The saying "Disability doesn't mean inability," stays with me everyday.  Elly may not have as many challenges as some with Spina Bifida, but it has definitely changed  our lives.

One thing that I have to say for parents who have a child with Spina Bifida or any other Birth defect or special ability, do not suffer in silence, get some help.  That is a saying that can apply to many situations everyday life, but it is important to talk to someone.  I said it before and I will say it again, you need a support system.  Family is okay, but when you speak with someone who has been in your shoes, or is in a similar situation it can lessen the burden.  You are not in their alone, so get connected.  

I know a lot of the words in this post are redundant but I am just so thankful that we have made it through this year.

Najeema

Updates coming soon

So much going on in our lives as usual.  Sorry that it has been a while since I updated.  Between physical therapy, starting my etsy store, trying to enroll in the local community college, scholarship hunting, it has been a lot.  Thank you for your patients but feel free to drop by my personal blog at www.iamcurlylocks.blogspot.com and find out whats new.

Peace and Love,

Najeema

Elly's Born Day

Not everything that I write on here is going to be pretty, but it will be truthful. 

"I went through the labor pains but I didn't go through the pushing.....I just woke up and my belly was flatter and I was told she was healthy and in the NICU."

That was one of the first things I wrote after going through a C-Section with Elly.  It was only the beginning of the deepest depression that I have ever felt in my life.  For quite a while I was very disconnected from my newborn.  This time around was different, if you didn't know Elly has an older sister.  I guess its something through the pushing process, and feeling something so great come out of you, a tiny human that grew inside you for nine months and you alone bring them into the world.

A C-Section was the last possible option that we wanted.  I went into the hospital for my scheduled induction and it didn't necessarily go as planned. It took far to long for me to dilate and after hours of  holding on to my goal of another natural birth, it was taken away in an instant.  Ellys' heart rate was unstable, every-time I had contraction it decreased significantly.  We tried everything to change this.  I knelt face forward against the hospital bed, rotated side to side, they even gave me something to relieve the pressure.  Nothing worked.  Ellys' heart rate dropped suddenly, doctors and nurses flooded my room. I was scared, I know my composed husband had to be scared.  I only had a few moments to say a quick prayer with my spiritual mother over the phone, then I was wheeled away swiftly.  I could only do what I was trained to do all my life, call on the name of Jesus.  "Lord protect me. Lord touch the hands of the doctors" is the last thing I can remember before things got groggy and I was knocked out.  I could still here what was going on around me a little bit, but I was completely incapacitated. 

There was this nurse...to date, I can't remember her name, but she held my hand through the entire operation.  She squeezed it at just the right moments to let me know that everything was going to be alright.  I believe that God sends just the right people at just the right time and knows exactly what you need in the moment.

My faith has carried me through these hard months, it is the only thing that brought me out of the depth of depression.  I have my moments from time to time where I doubt all that God has done for us, but then I am reminded of the blessing that I  have been given in the form of Elly, our Joy. 

Najeema

Southern Michigan Spina Bifida Connection

One of the greatest joys of my life right now is to be apart of a grassroots organization called The Southern Michigan Spina Bifida Connection. Basically we are a Michigan based group,  hoping to create awareness and prevention of Spina Bifida in our great lakes state. In the future we also hope to provide financial and emotional support for families affected by Spina Bifida.

On Saturday I had the opportunity to attend a my first official meeting. There were about 17 of us. Some medical staff who work with our kiddos everyday, new parents trying to overcome challenges of day to day life, experienced parents acting in an advisory capacity, and adults with Spina Bifida.  It was so encouraging to know that I am not alone in this, and that we are not the only family with questions.  You go through a lot having a child with Spina Bifida, and sometimes there is uncertainty.  The best way to have peace of mind is to live one day at a time, without thinking about tomorrow.  Elly is one of the greatest blessing in my life.  I have grown so much as a woman since she was born.  I believe I know about my vulnerabilities after having her. 

On another note, Southern Michigan Spina Bifida Connection is in the process of planning several different fundraisers right now, but our main event is Rock, Roll, and Bowl which is June 15, 2012 at Drakeshire Lanes in Farmington Hills, MI.  This event is a fundraiser to benefit the National Spina Bifida Association apart of their 100 Nights of Parties.  It will be an event filled with food, fun, and live entertainment.  For ticketing information visit http://rockrollandbowl.eventbrite.com/.  We are still looking for corporate, business, and personal sponsors so if you are interested email Morgan at rockrollandbowl@gmail.com or email me directly at najeemat@gmail.com.

To find out more about SMSBC visit our facebook page at https://www.facebook.com/groups/306634406062955/

Najeema