Friday, January 27, 2012

Updates on our little Man!

We have noticed over the last few weeks that Joshua seems to be more and more frustrated with his lack of mobility. Sure he can crawl, but he is 19 months old and he wants to stand up and run, play outside, keep up with his sister, and access all of his toys. Our therapist has been urging us to consider a wheelchair, but, frankly, we were just terrified of the costs associated with it. Our insurance will only pay $10,000 for Durable Medical Equipment for the LIFETIME of the policy. Yes, that's right! As long as we have this health insurance plan the max they will ever pay for equipment is $10,000. Ridiculous! Durable Medical Equipment includes wheelchairs, bracing, walkers, crutches, catheters (which we use on a daily basis) and any other potential equipment he may need. We talked to our therapist and found out that the cost of ONE PEDIATRIC WHEELCHAIR is nearly $7,000! Holy cow! And our insurance only covers 80% leaving us stuck with one heck of a bill. So we knew that if we went forward with a wheelchair at this time it would leave us little to no insurance coverage for any other future equipment he may need. We tried applying for a program for institutional deeming in which they look at Joshua's income alone (he makes zero) when considering him for Medi-cal insurance due to his disability but, of course, we were denied!

So our solution: The ZIPZAC chair. Check it out at www.myzipzac.com. The greatest invention I've seen to day and created by a family of a child with Spina Bifida.This chair should arrive in two weeks and will be absolutely perfect for out little man. Thank you to both sets of grandparents for helping us with the cost.. we really appreciate it!

So that was last week that we decided to go forward with the Zip Zac chair. Then on Sunday we noticed that Joshua's eyes were starting to get very oozy. We took him to the pediatrician and sure enough- Eye Infection. At the same time we noticed that his little boy area on the right side was looking very swollen. I knew instantly that it was a hernia because he had the exact same thing on his left side a yr ago December. On Wednesday we took him in to see the Urologist and he confirmed that it is in fact another hernia and that he will need another surgery. So surgery #5 is booked for February 23rd. We got through 2011 without any surgeries, but I guess 2012 is another story. Hopefully this will be his one and only this year.

As we near the end of this week, both kids and mom are sick with fevers, sore throats, cough and just all around feeling yucky. Hoping next week is a little smoother.

Friday, January 13, 2012

A little boy named Tripp Roth enter my life about a year ago by means of a blog and has forever changed me and brought new meaning to my life. And as this little boy in Ponchatoula, LA lays in his mother’s arms during what seems to be one of the last few weeks of his life, I learned this week just what a change he has brought to me.

I took Joshua to see his neurosurgeon, Dr. Michael Muhonen, this week and he asked us how we were doing. He told me how “great” Joshua looked and I told him just how fortunate we were. How blessed and how lucky we were to have Joshua in our life and how amazing he is and what joy he has brought to our family. Dr. Muhonen said to me “how great it is to hear a mom of a child with special needs call herself fortunate”. I thought about that afterwards and how different I felt over a year ago. I didn’t feel fortunate back then, I felt sorry for myself and my son. I felt like I let him down by giving birth to him with this debilitating condition. But see, then I learned of Tripp Roth and I began following his story and I realized that I had nothing to feel sorry about.

Tripp Roth is an inspiration and his life, though it will be cut short, has served so many amazing purpose. In my life, it has taught me to be happy with what you have and appreciate the many blessings that God has given you, despite how little you feel those blessings may be. I may have a son with Spina Bifida, but I have a beautiful smiling little boy who will get to enjoy birthdays, and vacations, and go to the park. He will at some point see the ocean, and go to school with friends. He may not walk or run along side of them but he will laugh and joke with them.

Little Tripp Roth cannot see, he cannot laugh, he is unable to look at his mom and tell her he loves her, although Lord knows he loves her more than one can imagine. He cannot stand up and play with his toys, he cannot go outside and appreciate the beauty that is all around us.


Each day, I read on facebook, people talking about about their lives. People get upset because their spouse didn’t pick up the phone, or because they lost a pet (that was me not too long ago), or people stress about financial problems. I know these things are hard, but I would just hope that by knowing a little bit about a little boy named Tripp and the struggles he and his family have had to endure, that it will bring a little comfort to one in times of sadness or stress. Each time I began to feel down about something I think about this little boy and all that he has taught me. I am just thankful to have what I have and I couldn’t have asked for more.

Thank you, Courtney Roth, for sharing Tripp’s story as a gift to the entire world. I know that through your sadness and your little boy’s suffering you are giving the greatest gift of all… you are changing lives everywhere!

Tripp will be in my heart always!


Friday, January 6, 2012

The end of 2011 and hello 2012!

Happy New Year!

So it has been quite a while since I updated our blog and there certainly is a lot to update. We have had a good but busy ending to 2011 with a few minor hurdles along the way.

Abby and Joshua are doing fantastic. I'm happy to say that Abby has FINALLY outgrown her terrible twos and is now just a "typical" curious and happy (and sometimes mischevious) three and a half yr old. She amazes me each day with the things she says and her observations to every day life. She catches everything and oh what an amazing memory she has. If I tell her I promise to lay with her that night for 10 minutes she definitely doesn't let me forget it. She is a really big help with her baby brother, is starting to understand the importance of sharing her toys, and is getting easier to put to bed at night. She loves having her stories read to her before bedtime and her favorite book to read is The Bible, yeah!

Joshua is a GIANT 18 month old baby boy AND he is all over the place. It is amazing to look back and see how much progress he has made since Summer. He is now crawling all over, both army crawling and on his hands, and he can pull himself up to stand. He is a very determined little boy and when he puts his mind to something he will find a way to do it.


In August, I thought it would be fun to start Abby in dance classes.

We enrolled her at the local dance studio, she made it thru two classes, and then decided that she wasn't ready and refused to go in the dance studio without Mommy. We were lucky enough to be able to snap a few photos adorable photos of her before she changed her mind. We will definitely try again in a few months.



In September Abby had another big month and began Preschool. Her first day went very well and since then she has asked to go to school almost every day. She loves her teacher and has made lots of new friends and even went to her first birthday party.







In October we participated in our second CHOC Walk in the Park to support CHOC Hospital. We walked in honor of Joshua and were able to raise a lot of money to support a hospital that has played such an important role in Joshua's health. It felt great to be able to give back to a place that has given us so much.

And our entire group...

Another big event that happened in October is we MOVED!!! We are now living a beautiful house in the North Hills of Brea. The kids have a playroom, Mommy and Daddy have their space, and we even have an extra bedroom for the grandparents. Yeah!

October turned out to be a bumpy month for us, but let's just say we got thru it and we are not looking back! We were really looking forward to taking the kids trick-or-treating for Halloween this year in our new neighborhood. There are a lot of kids in our cul-de-sac so we knew Abby and Joshua would have a great time. Mid October I started getting a really bad bug. I woke up with a fever on a Sunday and the fever continued through the entire week. I wasn't able to go to work and THANK GOODNESS for my wonderful manager who let me work from home because I was as sick as a dog (don't you love that saying?). By Friday, I was not only running a really high fever but I also had what I considered to be the world's worst headache. It ran from the back of my neck into my head and no matter what I did I just could not get it to go away. Finally, Friday night around midnight I had had enough and went to the ER. I spent the entire night in the ER with CT scans, xrays, blood tests, urine cultures and finally a spinal tap which led to the diagnosis of Meningitis (scary!) They admitted me to St. Jude Hospital and I spent the next 8 days there in agonizing pain, with the Infectious Disease consultant running lots and lots of tests to determine what kind of Meningitis I had. I was very fortunate that I only had Viral Meningitis which is a lot less serious than the alternative of Bacterial. I was discharged after 8 days, home for another week recovering, and then finally returned to work in November. Pheeew...that was long!

I was in the hospital for Halloween but thank you to Daddy for taking the kids trick or treating by himself and snapping some cute pictures of our bunny rabbit and kitty cat (Abby picked out both costumes this year).




Joshua also got his second set of braces in October - KAFOs (Knee Ankle Foot Orthotics). They lock at the knee to give him support when standing. We wear them mostly for therapy and for practicing standing.



In November, we were faced with another bump in the road with the loss of our two family pets Ginger and Bella. I wont get into the details surrounding what happened but it was a very hard time for us all, especially Abby.

Ginger:
Bella:



We miss them both tremendously... and they will never be forgotten. Our pets are a huge part of our lives. And, call me crazy which I probably am but I just couldn't resist bringing more crazy back into the house. There is something about the constant pitter patter of feet on the stairs that makes me feel satisfied with life. So with that being said.....

We welcomed in two new additions to the family!

Meet Sophie (a cock-a-poo) and Bear (an Alaskan Malamute). The kids love them!

We had a really amazing December with getting the house decorated inside and out for Christmas, setting up our tree, wrapping presents and visiting with family. Rather than make the journey to the local JC Penny for our annual holiday family photos, we decided to brave a photo shoot at home. It was pretty successful and we were lucky the kids cooperated enough to snap a few good shots! =)



Christmas Eve was nice and quiet at home. Abby and I made cookies for Santa, opened our Christmas pajamas, left reindeer food in the front yard, and watched Christmas movies before going to bed.


And then Santa came....



On Christmas day we hosted the entire family at our place. The kids were spoiled!

We were lucky this year to have our family watch the kids so Doug and I could sneak off for an overnight trip in Big Bear with Doug's brother (Uncle Dan) and Auntie Sarah. It was a beautiful day and night and we kept it pretty low key. Played some games in the cabin, went out for a nice BBQ meal and enjoyed the company.

So, that was the end of our year and wow am I exhausted writing all that. It was a pretty amazing 2011 and we can't wait to see what 2012 has in store for us.

As for Joshie's health, he is doing great. Kidneys are healthy, still cathing and giving meds, physical, occupational and speech therapy each week. More updates to coming.

Wishing you and yours a wonderful and prosperous New Year!

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 with...here 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 us...it 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 pressures...docs 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. And...it'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!