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!

11/9 - Six Weeks!

Can you believe it has been six weeks?  We went to Lubbock today for another Dr appointment.  This time it was mine and not Toby's.  Everything went great.  Toby and I also stopped by to say hello to Dr. Atkinson and his staff (this was the Dr that found the defect in Toby's spine)  They were glad to see him.  Toby's casts are not near as dreadful as I had feared.  They are kind of just like little boots that can't come off.  He was fussy the first night he had them on, but no complaints after that.  Tonight I will take them off, give Toby a nice bath, and we'll go tomorrow for new ones.  The glue they use isn't quite as strong as a normal cast, so with some tugging I should be able to unwrap them (I do have permission :)). 

By the way...do you like the blog makeover?  Thanksgiving is one of my favorite holidays.  I think it is the weather, the family, the good food, and it's also my birthday.  So of course I had to give my blog some turkey flair!  I wanted to know what everyone was thankful for this year.  Post what you are thankful for in a comment.  Here are some things I am thankful for this year!

1)  I am so thankful I am not living in an RV anymore!

2) I am thankful that God gave me a child to love.

3) I am thankful for my husband, family, and friends.

4) I am thankful that I have a job that I can enjoy everyday instead of dreading.

5) I am thankful that I am NOT related to balloon boy's dad.  haha

6)  Thankful a new dishwasher is on its way! (mine is worthless)

Please share yours!

11/4 - Precasting

This is Toby in his pumpkin outfit for Halloween.  My goodness he is growing so fast!  His face changes everyday.  He is starting to give a little semi-smile when he is entertained.  I've seen him do it once for his Grammy and then he does it a lot for Adam....but he has yet to do it for me :(  I guess I'm not entertaining enough.  Really though he is doing great.  Tomorrow I am taking Toby to the Southwest Rehab Center.  He is getting his first series of casts to correct his clubbed feet.  This will be about a 3 month process.  I sure hope it goes fast!  I am grateful though because it is really not as long as I thought it would be.  The goal is to give Toby a nice flat foot for walking, or to fit into a brace to aide walking.  The ortho really thinks he will be able to be mobile with the help of braces so we want to get him ready!  Also, I have to brag on Toby.  He has been sleeping through the night!  I am so proud of him.  This will help so much when I go back to work if he keeps it up.  I am going back on the 16th.  Mixed feelings about that of course, but I do think it will be good to start mixing in a little of my old life.  I think the casting procedure will be harder on the parents than it will be on Toby (since he doesn't really know he has legs yet) so pray that I'll be a big girl.  Night all!

10/27- Doctor visit

Just wanted to let everyone know that I took Toby to checkup with the Neurosurgeon.  Everything looked great and we don't have to go back for 10 weeks!  Yay!  Also, a good friend of mine from the past was working as his receptionist.  Love it!  Have a good night everybody.

10/24 - Milestones

8 years ago today I carved a pumpkin.  Haha!  There really is a lot more to it than that.  We carved pumpkins at youth eight years ago today.  Of course like any of my artistic ventures mine stunk!  It probably fell in the middle.  After that Adam asked me to be his girlfriend.  I remembered this today and I thought it seemed special because today is also the one week milestone of us being at home.  Who knew we would be here.  I can truly say life has made me very happy!  Time really flies.  Toby is really doing well.  One thing I can say for sure is thank goodness I live in the same town as my mommy!  He got to meet a lot of family this weekend and it is so fun to show my baby off :)  We also had our first pediatrician appointment yesterday.  When you are in the NICU you have a neonatologist instead of a pedi so you don't meet up with them until after you are discharged.  Dr. Hanson is Toby's Dr. now and I felt really good about everything.  He is up to 7 lb 11 oz so we know he is really holding onto his calories.  Yesterday was also the first day I took Toby out.  We also went out today (to Mom's house).  It is nice to get out of the house, but I am really trying to keep him out of public areas.  

I really must say what a gift it is to be able to hold your baby in your arms.  Things for us are so normal now...but I can't help but to remember all the families in the NICU and wonder if they are still there.  My mom's cousin had their baby on Aug 10th (24 week gestation baby)...and they are still there.  This makes my three weeks there seem like a brief moment.  As a new mother I try to remember how lucky we are to be doing so well when we are up in all hours of the night :)   I am so glad we made it to this point.  Now if Toby can only figure out what nighttime is and that Mama needs some sleep :)  I also just want to say how blessed I feel being a part of this community.  So many have been generous with visits and dinners.  I feel spoiled and loved...and I do believe these feelings are good ones!  Thanks to everyone who has been such a great help!

10/17 - We Are Home!

Here is our sweet Toby in his carseat!  What an exciting day.  We got to come home today.  Of course it feels wonderful.  Thank you all so much for the prayers and support while we were in Lubbock.  We woke up this morning, finished getting ourselves out of the RV (it felt like we were moving), and were dismissed from the NICU around 10:30 am.  We were home before noon.  Even though we had to stay forever, I really feel comfortable with Toby's health at home, which was really important to both of us before we got here.  Today we were definitely tired, but I think tomorrow will  bring a new day and we can start finding our rhythm.  I remember the day when I found out Toby would have some problems.  I remember feeling so lost and hopeless at the thoughts of all the surgeries and pain he would have to go through.  I have worried about it everyday for the past six or so months.  I finally feel like we are through with the tough part.  I finally feel like I can let that go.  I can start enjoying this and feeling normal.  I know Toby will have more procedures in the future, and that there will be harder days than some, but I know the toughest part is behind us.  I know we could not have done it without our God and the prayers that he heard.  Love you all... We are going to bed !

10/14 - Due Date :)

Today is my due date...and I must say...I am so thankful I am not having a baby today!  I am also so thankful I am no longer pregnant.  I can tie my shoes with ease, bend over, walk without waddling, and I can go all night without using the restroom!  So now that I have that over - to the good stuff!  Toby is doing so well.  It seems like he is feeling so much better.  He can move around now and lay in different positions so I know that is more comfortable for him.  He can also be held again...I am sure you know how happy that makes both of us.  It is so good to see him better.  They are telling us we might be able to go home on Friday or Saturday.  Not holding my breath, but it sure will be nice if it happens!  Thanks for all your prayers, they are really paying off. 

10/11 - Finally....An update!

By popular request...here are some pictures that have me in them.  The top one is a family picture one of the nurses took for us.  It hangs on Toby's bed.  I love it!  The second one is a picture of me holding Toby for the very first time.  It is from when he was four days old.  I think this picture is one of my happiest moments ever!  When I see how bruised and red his back is here it is unbelievable.  It looks so good now!  They took the stitches out yesterday.  Today is Toby's 14th day in the NICU.  It is my 20th day here at the hospital.  There is no doubt that I am tired, frustrated, ready to be home, and everything else.   However, there is no QUIT with a baby in NICU, so we just keep going.  The past few days have been a lot of waiting.  Toby has the drain in his head and can't turn his head to the other side.  I can't hold him for now, and that is of course hard too. He's sick of laying in one position for five days straight.  The only thing that satisfies me is that I know he will not remember any of this.  Besides his frustrations he is the sweetest baby.  He loves his bottles and feeding times.  He wiggles around and shows off his strength.  He pretty much can stand up on his feet (ha ha I know that sounds impossible...but its true) I can't wait for you all to meet this special person!  Toby's hydrocephalus is borderline between being controlled and needing a shunt.  So this is why we have been waiting and observing.  Today we monitored the Inter-Cranial Pressure and I think Dr. Nagy has finally decided to shunt him.  Even though we would prefer not to have one...we are okay with this decision.   We are still waiting to find out the exact plan and what time his surgery will be.  The one thing we know is that it will be sometime tomorrow (mon).  Waiting for surgery is terrible, and I think that is the worst part.  I am trying not to think about it yet, but of course it weighs heavily on my mind.  Please pray for us and Toby.  I know he won't remember these days, but I feel so terrible that he has to go through everything he's dealing with.  I think they will run antibiotics for 72 hours after surgery and then if he is doing good we should get to come home.  I am hoping that by the end of this week we will be back.  :)  Pray for that too!  

10/7 - Setbacks

I went in to feed Toby this morning and the circumference of his head had increased quite a bit since the day before.  Also, the fact that fluid was coming out of the incision threw up some red flags.  Dr. Nagy said he knew it was time to get rid of the fluid.  Toby had an external drain put in his head today.  He didn't put in a shunt yet because he is at risk to an infection because of the fluid that had been coming out at the incision site on his back.  So for now the drain allows the fluid to come out in a tube.  If he goes three days infection free Dr. Nagy will put in the permanent shunt.  It has been such a long and emotional day.  I fed Toby at 10am and then they would not allow him to eat because he was going into surgery.  They took him to surgery around 6pm.  That is 8 hours of an infant not eating.  I held him in my arms and he cried for 2 hours.  It was so hard and it felt abusive.  I was so relieved when he came out of his surgery and he immediately wanted off the ventilator.  He is so tough!  They have him sedated for now, but when he wakes up he can eat.  They will keep him pretty out of it for the next three days.  They want him to stay calm and quiet.  He can't turn his head over and lay on the side the drain is on.  This is a challenge with Toby since he loves to maneuver himself around his bed.  He turns his head side to side all day.  The nurses will really have to watch him.  It is a bit disturbing for their to be a tube in coming out of his head.  It is hard for us to see, and I can't imagine what it is like for him.  I am waiting for their call that he has woken up.  I will be so happy to know he has had something to eat.  I know we will have to do all of this again soon, but I also know it is part of what he needs.  Going home Friday is now a lost idea.  We will just start hoping for next Friday.  I won't lie it is so disappointing to not be going home.  This is our 16th day here, and I miss home.  Please pray that Toby does not already have an infection and that he won't get one.  

10/5 - Another Day

Greetings from the parking lot!  We had a good/confusing day.  I saw Dr. Nagy (neurosurgeon) first thing this morning and he said everything looked good.  Then I saw Dr. Sutter (neonatologist) and she thought his head looked swollen.  ????  Then this evening my nurse did the measurement and it was the same it has been the past three days.  So who knows.  As far as I know...things are good.  Toby also had some renal tests ran today.  People with S.B. tend to have bladder/bowel issues so he has a urologist and he wanted to see what was going on down there.  We haven't heard anything back yet as to what the thinks.  I got to feed Toby "the natural way" today.  It was very special.  They took him off of his food restriction so he was very satisfied to eat that way plus get more from a bottle.  We could not even get him up for his 9 pm feeding.  He seemed so happy and comfortable when I left a second ago.  A small concern is Toby has developed a little sleep apnea.  His oxygen drops during his deep sleep so they say he stops breathing for a few moments and then starts back up again.  They said its not a huge thing to worry about unless his heart-rate starts to drop.  So here are my prayer requests:  hydrocephalus stays controlled, apnea problem goes away so that we can come home Friday, and that urology report comes back good.  Also, there are so many parents in NICU that I have been thinking about.  I always wonder if they have the same support system we have.  I hope that they do, but I always want to lift them up as well.  As always thank you for lifting Toby up in prayer.  Night all!

10/3 - Toby's Progress

Every day it seems as though Toby is getting more and more comfortable.  We got some great news today.  They did another ultrasound of Toby's brain.  Based off of how he is doing now he is classified as having controlled hydrocephalus which means he will not need a shunt.  YAY!  PRAISE GOD!  WOO HOO!  He has a little bulge on his forehead that we will be watching.  We can now lay him on his side, and we are starting to elevate his head  a little at a time.  The doctor says if he continues to look like he does now then we will possibly go home at the end of this upcoming week.  This is so exciting because nobody has mentioned home since we have been here.  Besides the good news it has been wonderful holding and loving our little one.  Toby just loves to be held and I love to just sit and rub his little back and his soft head.  Adam and I have been doing so good.  We are very comfortable in the RV and we are getting some good rest.  Toby is on an eating schedule where he eats at 9, 1, and 5 every am and pm.  We enjoy going to see him at these times.  We are starting to get some visitors and I have enjoyed showing off my sweet one with pictures.  Tonight we went to my aunt's house for dinner.  I am blessed with such a great family and I have been taken care of by everyone!  I must say I that I am really learning so much about faith.  This has been the theme of my life for the past six months.  God has given me everything I have asked for.  I really figured Toby would have to be shunted, but God is taking care of him.  He falls in 20% of infants with spina bifida that don't need one.  That is awesome!  Thank you all for your prayers.  Not only is it a blessing to Toby, but it is teaching two new parents a whole lot about the Lord.  

10/1 - Being Released

Because of the pending surgery I was not able to sleep.  When we woke up we were waiting to hear back the results of the ultrasound.  Dr. Nagy did not think the hydrocephalus was bad enough to shunt today.  However, he still feels like it will need to happen and said "maybe tomorrow."  They said it is probably bound to happen it is just a timing issue as to when.  They don't want to put in a shunt if there isn't enough fluid to drain.  So I ended up just being exhausted all day long.  It was probably the worst day since we've been here.  All the nurses Toby has had so far were off and we had a new set.  I wasn't exactly pleased with the way everything was handled.  I learned today that you have to speak up!  The night nurse was great though and everything tonight has gone really well.  By the way....I got to hold Toby today!  It was the most amazing feeling.  He felt so sweet in my arms. I finally felt like I was  a mother.  I know he enjoyed it just as much as I did.  It was hard to put him down.  We are doing his feedings in our laps now.  They lay a pillow down and he lays on his stomach and we feed that way.  I was released today and we moved out into the parking lot.  It is really nice and we think we will be really comfortable.  It was such a relief to not have to leave him.  Lindsey came over to help get us settled in, and Dad helped get us some things to help make it feel like home.  It is killing me that Lindsey and Jacob are not able to see the baby.  They have each seen him once.  I know Lindsey saw him right after surgery... I wish she could see the progress he has made.  It is unbelievable.  Patience is a rotten fruit.  Dad got a lot of pictures printed off of his camera.  It was really sweet...I think new parents need something to show off.  It is also fun to lay them out and look at him.  Toby is really getting his schedule down.  He eats at 9, 1, and 5 ams and pms.  Adam did the 1 o'clock feeding, and I just got back from the 5.  Toby was awake and patiently sucking his passie when I walked in.  He ate with his eyes open (which he usually doesn't open).  They are dark and gorgeous.  Well I had better put myself back to bed.  Dr. Nagy is coming by in the morning. If he feels the head has grown we are doing surgery tomorrow (I guess today now).  I know it is only a matter of time.  Thanks for your prayers and keep them coming.  Toby could have a very long day!  I promise to put a picture soon!