Thursday, July 28, 2011

A much needed update!

Well, I know it has been a very long time since I've updated this blog but you know the saying "no news is good news", right? Well, it's very true. Life has been good, busy, but stable.

So what has been going on with the Niemann bunch since March?

May 11, 2011 we celebrated our baby girl's 3rd birthday! I can't believe I have a 3 yr old. Three has been a fun yr so far, but we have definitely carried over from the terrible-two's. Abby is spunky and hilarious and full of spirit! Abby blows our minds each day with the new things she comes up with. Her new favorite phrase: That's ridiculous! Her new favorite drink: water it goes...chalk pieces in it. Not recommended. Her bedtime: what's a bed time? She now goes to bed when mommy goes to bed because anything sooner and the war has begun. Her favorite food: Peanut butter and marshmallow spread sandwich. Her least favorite food: everything that isn't peanut butter and marshmallow spread sandwich. Her favorite activities: playing with play-do, chalk, and dancing.

June 9, 2011 we celebrated our baby boy's 1st birthday! The yr has just flown by. Joshua is a big as ever, and such a sweet little guy. He melts my heart each day with that perfect smile and big rosey cheeks.

As for Spina Bifida...Joshua certainly is R-E-D-E-F-I-N-I-N-G Spina Bifida. He is doing fantastic! Joshua is almost 14 months old and he can sit up perfectly. He still can't crawl but he can do somewhat of an army crawl and he can roll and scoot to wherever it is he needs to be. That little guy doesn't let the lack of feeling or movement in his legs hold him back from anything.

We just recently got him his first set of braces called DAFOs (Dynamic Ankle Foot Orthotics). They are designed to give extra support to his ankles and provide correct placement of his foot for future standing. He tolerates the DAFOs with no problems but has just recently learned to take them off..yikes! We have to keep a close watch on that guy. Joshua will go back to his orthopedic surgeon in 4 months for another checkup on his ankles and feet. At that time his doctor will decide whether or not he needs to have tendon transfer surgery (although at this time he says this is very likely). He will also decide what the next type of bracing Joshua will need. We have prepared ourselves for the fact that Joshua will always require some type of bracing and it will most likely get higher on his body the older and heavier he gets.

Here they are...

I know it made Daddy happy that I picked a sports pattern for his little man.
And smiling like always

We also just returned from 2 days at UC San Francisco Medical center for our 1 yr follow up for the MOMS study (management of myelomeningocele study). The first day was testing: neurological exam, developmental testing, xrays and ultrasounds. The second day was urodynamics and MRIs. The great news is that all the test results were good. Joshua's kidneys and bladder are doing great due to our strict and very-important cathing routine. Joshua's spine looks good with no evidence of any spinal cord tethering (a common occurrence following back closure) and no syrinx (another possible complication). This definitely left us with a sigh of relief. The only scare we really had was the diagnosis of a small cyst on his pineal gland located in his brain. We put in a call to our neurosurgeon and assures us that this is nothing to be concerned with at this time. Fingers cross that it stays this way!

Well, that is all the update I have time for tonight. I will do better at keeping the blog more up to date, but always know that a lack of updates is a good thing for means STABILITY, which we like!

Thursday, March 17, 2011

SB Clinic Update

Last week I took Joshua to his Spina Bifida Clinic appointment at CHOC and he is doing great! Docs are very pleased with how everything is looking. We reviewed his ultrasound results and his bladder is looking good. His kidneys are still collecting some urine but docs don't seem too worried about that. We are just going to keep him on antibiotics to keep his urine as sterile as possible to avoid a UTI or Kidney infection. He is also taking a medication three times a day that relaxes his bladder so it doesn't work too hard. We are increasing his cathing to 5 times per day to give his bladder another opportunity to empty and maintain lower say this should help with the urine in the kidneys. They will check them again in June to see how they are looking.

As for ortho, Joshua is maintaining the same leg movement that he had, which is always great news. Ortho plans on beginning his bracing at the next visit (12 months old) as long as he is sitting up on his own. He is close...real close.. so let's keep our fingers crossed!

Tuesday, March 8, 2011

The end of the Two's for Princess Abby

Our sweet little Princess is nearing the end of her second year! Amazing! This yr has been tough...they don't call them the terrible two's for no reason. But we are definitely seeing the light at the end of the tunnel. It's so fun to see her little personality develop.'s nice to observe her beginning to listen and understand what mommy and daddy are saying. She's a stubborn one for sure and she challenges us each day..but she is also so loving and nurturing and so full of spirit. I love watching her change and develop into the little girl she is becoming.

Some of her favorites:

Night time activity: watching one of the Disney movies and drinking Apple Juice. This week the favorite movie is Lady and the Tramp
Morning Activity: waking up with a smile on her face and yelling "Mommy I'm awake". Then she quickly demands a "cereal bar" (nutrigrain).
Game to play with Mommy: brushing Mommy's hair and putting in a pony tail "ouch"
Pair of shoes: Brown boots that she wants to wear with every outfit (even when it's warm out).
Toy to play with: baby dolls
TV show: Yo Gabba Gabba is in the lead!
Diva moment: telling Mommy or Daddy to "go away" (which we do not like)

Most recently she:
got a haircut
started taking showers instead of baths (and we're seeing the difference in out water bill)
started sleeping again in her twin bed (although she still has nights when she crawls into bed with us)
began wearing a size 3T clothes and size 8 shoes
learned the song "It's A Small World"
mastered her "please", "thank you", your welcome", "excuse me" and "bless yous"

And Most Importantly...she REALLY REALLY adores her baby brother and loves being a great Big Sister!

Happy 9 month Birthday Joshua!

So tomorrow Joshua will be 9 months old! Amazing, isn't it? Feels like just yesterday when we found out we were pregnant, even sooner than that when we found out about his Spina Bifida and feels like only minutes since we welcomed him into this world. What a crazy and wonderful and scary and joyful and stressful 9 months this has been. And yet..I can honestly say I would do it all over again just to get a peak at his sweet little smile.

Joshua has had to work hard to get to where he is today. I give the little man a lot of credit. For "typical" babies it's a natural progression of tummy time to rolling over to sitting up supported to sitting up on their very own. Not my little man. He had to work hard for these milestones. He had to put in hours every week at physical and occupation therapy, lots of tummy time (which he hates) and lots of doctors appts.... Yet 9 months later I am a very proud mama to say that my son can do the following:

roll over from front to back
roll over from side to side
sit supported
almost sit unsupported
laugh out loud
say "baba" when he wants to
clap his hands together
almost get out a wave
reach for objects
pass a toy from one hand to the other
pick up cheerios and put them in his mouth
AND sleep 12 hrs per night

What great accomplishments! We are so very proud of you Joshua!

Thursday, February 3, 2011

My Son, My Hero!

I have to admit that I've been feeling a little down lately. Life gets difficult; money gets tight; it feels like it's one thing after another with no breaks in between. It's tough being a mom to a special needs child and having days, weeks, or even months where you feel sad, defeated, and feel like your life is never going to be yours again. Why? Because some days, some weeks aneven some months, your life doesn't belong to you. It belongs to the Urologist. It belongs to the Neurosurgeon. It belongs to the cathing..and to medications... and to physical therapy....and to paying hospital bills....and to fighting with the insurance company.... and to infections. Those times are difficult for me. They'd be difficult for anyone.

But lucky for me, I have a son who is smarter than his mom (I couldn't ask for anything more). Because on days like today, my son shows me just how great life truly is. Simple things, small things, but miraculous things happen.

Today at physical therapy Joshua rolled over, on his own, for the very first time. He doesn't have any feeling in his feet, he doesn't have any feeling in his calves and he doesn't have any feeling in his glutes, yet somehow he found the strength to roll over. He didn't stand, he didn't walk, and he didn't run...but he did something so very special. He found the strength that he didn't know he had, he put his mind to something, and he rolled over!

Some day, I'll ask him how he did this. I'm sure he'll reply "because I love you mommy!" and "I love you too, Joshie!"

My son is my hero. Because he doesn't let anything get him down. The sky is the limit for my little man!

Friday, January 14, 2011

2011...a new year...a new beginning?

Now that 2010 is behind us, Doug and I are able to look back at everything that took place and with a sigh of relief say, "wow, we made it!" Honestly, I never thought we would get through the year in one piece... and yet we did! The year 2010 has been the most challenging year of our lives.

Our son, Joshua, was diagnosed with Spina Bifida and hydrocephalus in February 2010. Before I ever set eyes on my son, I was told about all of the struggles he would endure throughout his life; the many surgeries, the endless doctors visits, and yes the physical challenges that were ahead of him. Before Doug could hold his son's small little hand, he was told that he would probably never play baseball and would most likely never walk. That broke our hearts.

Thank you God for bringing 2010 to a close. Thank you God for giving us the strength to get through all of the struggles that we faced. Thank you God for filling my son, Joshua, with so much courage that he came out of each of his 4 surgeries with a smile on his face. Thank you God for holding Abby's hand through it all so that she would know that her little brother would be okay. And, thank you God, because with you by our side and always watching over our son, we know that HE CAN PLAY BASEBALL AND HE CAN WALK and if he his little body chooses not to..... then THAT IS OKAY!

Now that 2010 is behind us, we can look forward to all of the amazing new experiences we get to share with our son. We are the lucky ones, and we thank you God for picking us to be his parents.

"Welcome to Holland"

These beautiful words are written by Emily Perl Kingsly, the mother of a special little boy with Down Syndrome. They describe perfectly a mother's perspective on raising a child with "special needs."

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.