Two Years! 10/3/2011

How weird is it that my last post was exactly a year ago today??? It's crazy! Wow another year has passed. I thought I would update about what has been going on in the last year so that I can keep an updated journal of Toby's journey. Most of all, I write this for him. I want him to understand what his life has been like up to this point, and understand the hard journey he has already so bravely travelled.

Toby had a bilateral club foot repair surgery back on March 11. He wore casts for six weeks, but was never held back. He had two pins in each foot while he was wearing his casts, and he was so active that one of the pins got pushed up into his foot and the skin healed over that later. Dr. Gutheil had to cut his foot open in the office to retrieve the pin, but it all healed up nicely and was fine. We are constantly stretching and trying to massage the scar tissue left on the inside of his feet.

After the six weeks, we got Toby's feet molded for AFOs (Ankle-Foot Orthosis) which is basically a calf-high brace that holds his feet in a flat position that will fit into a shoe. His AFOs are light blue with trains, trucks, and planes on them. Super Cute! However, they rarely stay on because he is so active that he crawls right out of them!

Toby still gets around by crawling. He can stand up as long as he is holding onto something, and he'll even take a few weight-supported/guided steps. He still does not have feeling in his feet and we question the spotty feeling he has in his legs.

So our next task in this journey is to work on Toby's mobility. We are trying to get him walking. Adam, Toby, and I went to Lubbock today to pick up his first walker. It is called THE PONY and is bright yellow. He was very excited to get it, but he is not quite sure what to do with it yet. I know that with the therapists' help he will get going in no time. Here is a picture of Toby on his first walker!

Toby also just celebrated his second birthday here at the house last week. Of course we had to do a Toy Story theme since he is currently in love with those movies. He got plenty of Buzz gear and hasn't stopped playing with his new treasures ever since.

This is a picture of Toby at his 2-year wellcheck. He got us into some trouble! He has been throwing up a lot lately and while I was discussing that with his Dr he decided to grab his head and said "OW" (a new work that successfully gets attention and sympathy as Toby has figured out). This action raised some red flags with the Dr. so we got to spend the rest of the afternoon at the children's hospital doing a rapid MRI and x-rays of his shunt. Turns out that everything was okay. I guess it's not a bad thing to be reassured that everything is working properly (blessings in disguise).

Needs: I'm always constantly aware that people are so genuine about the prayers they have offered in Toby's regard. Sometimes I feel guilty for holding back our emotions and needs from people who are so willing to help. There is no doubt in my mind that I have been blessed by the hand of God. I've never seen a miracle in real-life until I saw Toby's face for the first time. However, you always want more for your kids. I have really been focusing on this story in Mark about this blind man. We all know that Jesus healed the blind, and many other illnesses, in the Bible stories we've always heard. BUT the personal tie to these stories I have now helps me focus on the smaller details of these stories. This blind man in Mark heard that Jesus was in town. He was shouting and shouting and everyone around him was trying to make him be quiet. Just imagine trying to be heard in a crowd of people. But in the story it says the man "cried out all the more" and Jesus finally asked him what he wanted. As Toby's parents we will never stop crying out all the more. We want to be heard. My prayers are to understand what to "shout" about. We know that God has a special plan for our son, but we also believe that it is not intentional for our child to have a disability. We always pray for Toby and for his purpose in this life. May God use this situation as an instrument, and hear our shouts for whatever type of healing he intends. Thank you all for the love and support you have shared with us for the past two years!

ONE YEAR! 10/3/10

My oh my...how fast a year can go by. First and foremost, I apologize that it has been seven months since I have written! Time really can fly. The main reason I haven't written is because things have been going so smoothly. Toby is doing great. He just turned a year old and we had a great time watching him devour a cake and getting spoiled with many presents. He is crawling everywhere and is a very busy boy. Toby is also eating table food now. He wasn't real picky at first, but it is becoming clear that he prefers hotdogs, mashed potatoes, and cheese to his vegetables and fruits. We are also starting to rid his life of bottles, which he is not too fond of.

It is so amazing to look back at these postings at where we were a year ago. We are so blessed. Toby's spina bifida is almost non-existant in my mind. Right now, the only evidence of it is that his feet still have not been corrected. We gave up on the casting a little after my last posting. His skin was just getting to bothered by the fiberglass casts, and the plaster casts were slipping off too easily. So we have pretty much just ignored it until recently. Toby still does not act like he feels the lower portion of his legs. Therefore, he does not stand and is not trying to walk right now. I know it will come later, so it does not bother us at all. Toby definitely gets where he wants to go.

Toby has a bilateral club foot repair surgery scheduled for October 20th. This will be a pretty in-depth procedure. After surgery, he will wear casts for six weeks while his feet heal. His feet "should" be straight then. So hopefully we will get the casts cut off around the beginning of December, and we will start getting Toby braces. It is my belief that braces will be a lifelong thing for Toby in order to get around. Hopefully with the support of braces we can start working on standing up. I am really anxious to get this surgery over, as you can imagine, and even more anxious to get out of casts. Grandaddy and Grammy got Toby a little red wagon so we will use that for Toby while he is casted (he loves it by the way).

If you know Toby then you know how amazing he is. He is so happy and fun to be around. We are so proud of him. I can see that his determination will make up for whatever physical abilities he lacks. I don't expect to see him lag behind anyone! We love you Toby and look forward to another fun year with you!

Feb. 24 - Foot Progress 5 Month Update

Hello everybody! Jut wanted to give an update.  Toby is doing great!  His feet are really straightening.  Last time we went for casts we were told that he would probably wear this set and then one more, and then he would send us on for the surgery.  After surgery I think Toby will wear casts to his hips for 3 weeks and then we will be done with the heavy stuff!  I am so proud of him.  Milestones:  Toby is rolling over (although he is not real aware he's doing it).  He is also really working on sitting up.  He hasn't quite figured out his balance yet, but I know we are getting close.  He is also starting to grab things.  His hand-eye coordination is pretty poor right now, but I know he is getting better because he certainly pulled my hair the other day.  Toby is 4 days shy of being 5 months.  He is so talkative and will jabber along with me when I sing.  He is starting to figure out different sounds, and he is already mimicking everything we do. This is a cute picture of him at daycare...just thought I'd share.

Parenting Help!

I stumbled across a few pictures on the internet and had to share.  This is just in case any new moms out there need some help knowing what to do and what not to do!  They made me laugh!

12/29 - Neuro Followup

Just wanted to let everyone know that Toby had a CT Scan today and a shunt series x-rays to check up on things today.  Everything looked great.  The neurosurgeon said that one of the ventricles is draining more than the other but for now he wasn't worried about it.  We will go back during spring break to do it all again.  Tomorrow we go to the urologist to check up on things there.  I am so tired of Dr Appointments at this point, but am thankful not to get bad news!  I am starting to understand the long road people with Spina Bifida children are always referring to being on.  Night all!

12/27 - First Christmas -Toby is 3 months!

Toby had his first Christmas!  It was fun to have him this year, and I know it will be even more exciting for him next year.  Adam and I got Toby a walker that looks like a hot rod, but to be honest...we haven't even taken it out of the box.  He also got some clothes and a toy for his carrier as well, but I didn't wrap them!  I know I'm terrible...but it seemed like a waste for him to not be able to open...does that make me a bad mom??  Don't answer that!  I have to say that just having him there is the most special part of a baby's first Christmas.  I can always look back and know that he was there, he was happy, and most of all he was healthy.  The three of us went to Mom and Dad's house for Christmas Eve and the night after.  It really felt like a vacation :)  Mom and Dad gave Toby a little hand-made wooden train that one of our members had made and donated to the bazaar.  I thought it was so neat!  Mom also had a blanket that she had bought for me at the bazaar while she was expecting me.  Great idea Mom!

I can't believe it has been 3 months (tomorrow).  As you can see in the pic he is growing so fast.  He is really holding his head up so well now!  ECI has been working with us.  A therapist came to the house and played with Toby the other day.  It really seems like Toby is keeping up with all of his development.  I am so proud of him.  Right now there isn't anything slowing him down.  Our biggest obstacle at the moment is just keeping his casts from sliding off!  His feet are getting so straight that they keep popping right off.  Toby will go have another round of Dr visits this week.  He has a CT scan and an appointment witht he neuro-surgeon on Tues.  I'll let you know how it goes.  By the way...Adam got a flip video camera for Christmas so we will try to do a video blog starring the little charmer soon!  Happy Holidays to everyone!

12/4 Feeling Blessed

Last week we went to Covenant and had urodynamics done.  This was a test where they put a catheter in the patient and fill them up with water.  Then they monitor the pressure given when the patient releases the water.  We did this test because the Dr wanted to make sure Toby was capable of releasing all of his urine and that we weren't putting hid kidneys at risk if it wasn't.  The test was horrible.  Toby was tough through it, but the nurse doing the cath couldn't get it in.  So it turned a one hour procedure into a three hour ordeal.  While we were down in radiology the people working on him seemed like they were confused.  It felt like what was happening had never happened before.  They called the Dr. and asked if this was normal.  Unfortunately, when I asked the nurse if things were bad she would only tell me "The Dr will read your report and give you the results"  so I left with a heavy heart.  

I have been really worried about it since it seemed like it didn't go well.  Bad results would mean that we would go ahead and start putting in a cath on a daily basis and I am just not ready for that.  I really freaked out yesterday when they said they read the report and they want to talk about it next week.  I felt like there was urgency to it.  Today I called and basically begged them to just let me know what was going on.  They finally agreed that they would have the Dr call me.  He did.  It was really a blessing because he told me that he just thinks Toby has a small bladder, but that he looked good.  He also said that the technician that usually does these tests in radiology was not there, so the guy doing it really didn't know what to expect.  I was so thankful.  I guess I need to have more faith :)  

Toby is doing so good.  He has started cooing and smiling...a lot!  He is very social and happy.  Yesterday we went to the Pediatrician and he weighed 10 lb 13 oz.  He had grown in length 5 inches since his birth.  He had 3 shots and he didn't even cry!  I am so thankful to have such a good baby!