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!