Thanksgiving (Super Late)

This month has been crazy and I haven't had time to do a lot of blogging but here are a couple of pictures from Thanksgiving Day. Zach was so cute and ate his meal just like a big boy (actually, better than his big brothers!) We had a lot of fun.

To My Fellow Bloggers

I just wanted to take a minute to tell the families of other children with Spina Bifida how much I appreciate your blogs. I don't comment often but I check them all the time and love to see your stories and triumphs. I feel connected though we have never met. I thank you for the pictures of your beautiful children and families. I congratulate you on the amazing job you are doing raising your children and meeting head on the extra challenges they have. Things aren't always easy, but they are so worth it. There are difficult times but oh, so many more wonderful times. Keep up the great work and know that you aren't alone in this journey.

To BabyCenter members, I've had so much to keep track of that I'm afraid the BabyCenter Spina Bifida Kids board has fallen off of the radar for a while. I hope to be better and get to know even more of you.

To all of our readers, we wish you a wonderful Thanksgiving!

Zach says "Enjoy the Food!"

…And He’s Off!

Zachary’s stander came today.  He looks so stinkin’ cute in it.  It’s such a tiny thing, especially compared to the one we’ve been using.  Even though it took a few times adjusting everything (thanks to his therapist), he seemed to really like it and caught on really quickly that he can actually move around in this thing.  It will still take a lot of practice to learn how to really go, but we’re all excited.

It will be great to see him become a little more independent and find the freedom of moving around.  I’m so excited that it’s here.

Jaiden was so cute when they brought it.  He wheeled it all over the house and wanted to write Zach’s name on it and when Zach woke up from his nap, Jaiden took it in to show him.  He calls it his wheelbarrow.  Jaiden is really good about taking care of Zach and helping him and it was so cute to see him as he showed Zach his “wheelbarrow.”

Future Computer Whiz or Future Mozart?

Zach was determined to get up to the laptop the other day. He was trying with all his might to get up, but couldn't, and was very frustrated. I finally gave in and he sat there so good and had a blast for the few minutes I let him play.

He also loves to play the piano and will crawl over to the bench and try to get up. If I don't put him up there fast enough, he'll start to scream (a new habit) and then is happy as a lark once he's there. He does really well sitting on the bench by himself, as long as he doesn't try to turn around, then he starts to fall off! Sometimes I'll put him up to the piano while he's in his stander and that keeps him happy for a while. Maybe that's a good way to make him practice when he's a little older...lock the wheels so he can't push away....hmmm....

Speaking of his stander, they called today and said they will be delivering it tomorrow! YAY!

Zach's Braces

We went up to Shriner's on Tuesday to pick up Zach's new braces and have them fitted. They also gave him a pair of sneakers that are made with extra room in them so that they fit with braces. We are very thankful for that because they are $40-$50 shoes and considering that rarely spend that much on my own shoes, we were excited.

The doctor said that if we noticed any red spots that didn't go away after 20 minutes of taking them off, to stop using them and to call him. They can cause pressure sores and all of the problems that go along with them. Well, he got red spots on his heels that didn't go away so we have an appointment for next Thursday when we'll already be in Salt Lake for other appointments. That means that he can't use them until we get them checked out. :(

He is supposed to wear the braces, called DAFO's all day but doesn't have to sleep with them. The will help straighten out his feet and toes and support his ankles. We hope to be able to do more weight-bearing excercises with them on.

We also received a letter today from our insurance that his stander has been approved. Now I just need to find out about how long it will take to have it made and get it. Yay!

Fun at the Park

We had a fun evening at the park, Jaiden, Austin, Zach and I.  I let Zach army crawl on the playground equipment wherever he can.  He loves to get down and move around and do his own thing.

   

Zach loves the slides but I have to make sure has long pants and socks on, otherwise his feet get caught and his legs pulled back as he goes down.  You can see from these pictures how much he loves them! 

You can also see his two “bellybuttons”, one is his real one and the other from his shunt surgeries.  I think it’s pretty cute, actually.  And ever since he found his belly button, he likes to play with it to go to sleep!  So when he’s tired, he start humming and play with it.  Too cute.

He will be 16 months in a few days.  I can’t believe it!

Stander

Today they came and measured Zach for his stander. I'm excited because he will be able to move around in it and can even use it outside. It can take up to 90 days to get it by the time it goes through the insurance and is made and everything. Hopefully there won't be any problems with the insurance. This is what it will look like:

But we ordered it in this color!

The wheels can also be removed. Let's pray that there won't be any problems with the insurance!

Shriners

Well, of course we have to have a picture! So, even though this post has nothing to do with ice cream or the fact that Zach thoroughly enjoyed his ice cream cone, here is a picture for your viewing pleasure. Or at least mine... On to the real reason for this post....

We are lucky to have a Shriners Hospital for Children an hour away in Salt Lake City. Zach's therapists had mentioned applying a couple of months ago and I got around to it a while ago. They accepted him and will see him for orthopedic needs. They don't base the decision on financial need but the needs of the children and there is no charge for all of the services performed within the hospital. They even make the braces there so they don't cost us anything. They are really expensive normally, I think about $1500 and have to be replaced often as the kids grow. So we are very thankful to be able to go to Shriners.

We had our first appointment this morning and Zach and I went up for his appointment at 8:00 in the morning. Of course we hit traffic and had a lot of stopping where there had been an accident. The hospital is located up by an area called The Avenues where there are a lot of beautiful old homes. Some are small and some are mansions, but most are well cared for and very charming. It had been years since I had been in that area but I would love to own a home there someday! Aaahhh. I digress....

Anyway, everyone was very nice at the hospital and the doctor evaluated his legs and hips to determine the need for bracing. He felt, as has his therapist, that braces called DAFO's (I don't remember the real name...oops) would help him support weight and to keep his feet in the right position. He also said that in the future he may need to have the tendons in his heel and hips released so that he can have the full range of motion that he should have.

They sent us over to the orthopedic section to make an appointment to make the mold for the braces but the nice man there squeezed us in so that we wouldn't have to return. It was a quick process, but Zach was getting tired and hungry, so he wasn't thrilled with it. The braces should be done in about two weeks.

They also sent us to physical therapy to have a therapist evaluate him but they were busy so I need to call and make an appointment. I'll probably do it for when we pick up the braces.

It was a great experience and I'm glad that Zach will have more tools to help him become as independent and mobile as possible. We will also be ordering him his very own stander tomorrow, one that he will be able to move himself around in. They will be coming here to measure him and show us the different options. By the time it goes through insurance and gets ordered, delivered, fitted, etc, it will probably take a couple of months before we get it so I guess we'll just have to keep using the one from early intervention. I'm very glad we've been able to use it, it's just really difficult to get him in, he knows how to undo himself and it takes up a lot of room.

Exciting things!

My First Airplane Ride

A few weeks ago, we went to beautiful Colómbia to visit Carlos’ family.  We were only able to stay a week but had a great time.  Zach did great on all of the flights (other than throwing up a couple of hours before getting to Bogota) and really did well during the whole trip. 

  On the plane! (I woke up really early!)

 

With my cousin, Isabella .

 

Taking a nap in hot, humid Villavicencio.

 

At my great grandma’s 80th birthday party.

 

That was a yummy cookie!

 

Aaah, sleep!

Mom, look at me! I’m standing!

Early Intervention brought a stander for Zach to use until we order him one - probably at the beginning of next year.  It’s not the one we thought they were going to bring because they couldn’t find it.  This one is a pain to get him strapped in and it’s really big and hard to move around.  But at least it’s getting the job done!

He uses it to bear weight on his feet which helps his muscles and bones to become stronger.  He needs to get some braces for his feet and we are going to start the process of getting them ordered.  They aren’t cheap and have to be replaced as he grows so we are looking at different options. 

He doesn’t love getting strapped into this contraption (partly because I’m completely inept and take forever) but once he’s standing up straight, he’s pretty happy.  He likes being up and having a different view of things.  At least for a little while.  Then he starts to get mad and pushes the little table away because he wants out!  We are building up tolerance to it.  For now he’s supposed to be in it for about 15-30 minutes at least twice a day but that will need to increase as time goes on. 

The other one has big wheels like a wheelchair so that he can learn to move himself around and not just be stuck in one place.  If they don’t find it at the early intervention office, that’s still the kind we’ll order when it comes time for that.

It’s taking some getting used to, seeing him strapped in there, but I know that it’s what he needs to become stronger and allow him to do all that he is able to.  I think his condition was easier for me to accept when he was a baby but now that he’s at the age that he should be moving everywhere and wants to be involved in things, reality is a little harder.  But it’s okay because he is learning great things and will do many great things.  I just have my moments.

One Year Old!

     

I can’t believe that Zach turned ONE this month.  This past year has been a learning experience, one that I’m sure is far from over!  We have loved having Zachary in our family.  He has such a great personality and sense of humor.  He is wise.  You can see it in his eyes.  He is determined and a little bit ornery.  He wouldn’t be part of our family if he weren’t!  My mom says they get their bad tempers from their dad because I still have mine! 

We are excited to see all that Zach can do.  He is now sitting on his own and is becoming quite mobile.  He is learning to get to where he wants to go, either by rolling, or pushing or scooting or the little bit of commando crawling he can do.  We now have to get a gate for the stairs! 

He is a delight and we all love him!

March for Babies

I can’t believe it’s been almost a month since the March for Babies!  We had a meeting today to discuss the event and things went really well.  We were expecting max 350 people and ended up having 500 adults and 200 kids.  While most areas of the country are down in fund-raising (March of Dimes is down $15 million) from last year, Utah County actually went up about 40%.  It was a great success and we hope to keep building on it every year.  Thanks again to everyone for your help and donations.  If you still want to donate, there is still time. 

Here is a little collage of pictures from the day.  We had a great time and had a lot of family come out and support us. 

Thank you!!!

A quick update

I'm sorry I haven't updated in a while. We moved the day before the March of Dimes and have been really busy plus we've had sick kids this week so I haven't had time to update...

The March went very well and our team has raised over $1,000 so far. Thank you so much to everyone for their support! Here is a picture from the day, more to come (when I've got a few more minutes to post.)

We're in the paper

Here is an article from the Provo Daily Herald on May 6th.

Getting Ready

The March for Babies is only 3 days away! There is so much to do these next few days because we are also moving. It will be interesting to say the least.

There is still time to click on the link to the left and sponsor our team.

The March of Dimes spends 77 cents of every dollar to support research and programs. Check out their website for more information on where your money goes.

Thanks for everyone's support!

Here is a Mother's Day picture of Zachary and Me.

Shunts and Grunts

Okay, so I guess that Zach does grunt a lot but this post isn't really about grunting, it just rhymed.

When he was about a month old, the area around his shunt was really swollen and then shunt itself would come out and then slip back into place. It's under his skin, so we could just see that it was slipping out. We took him into the doctors and went to the Spina Bifida Clinic at Primary Children's. They did an x-ray but everything seemed to be okay and it was getting better so they decided to just wait and see. Well, it did get better and he never had any signs of shunt malfunction which include projectile vomiting, excessive sleeping, excessive crying or "sunsetting" eyes. His head circumference was always great at his check-ups and we were counting ourselves lucky because he had avoided any problems.

We got a letter a month or two ago that the kind of shunt he had was being recalled because the catheter that goes into the ventricles in the brain could become disconnected from the resevoir. They didn't expect it to really increase the chance of malfunction but the company was offering a free CAT scan to double check everything. Life was busy and it took me awhile to get around to calling and when I finally did, they got us in that Friday.

So he went to the hospital here in Provo the Friday before Easter for the scan. They said the neurosurgeon should get back to us the next week. An hour later we were all loaded in the car getting ready to pull out of the garage to go to my parent's house for the weekend. That's when the doctor called and said that out of all the the scan's they'd done, his was the first to be disconnected.

We met with him two weeks later to decide if we should just wait and see how he did with the shunt disconnected or if we should just replace it. We decided that because his ventricles were "moderately enlarged" and because he had very obviously needed the shunt when he was born, that it would be better to just replace it now instead of waiting until he became sick.

We went in the next Monday morning (last week) and he had the shunt replaced. It was a very quick procedure but they had him stay they night to monitor him. He did really well but was a vey sad baby when it was over. He was just sobbing like his little heart was broken. All he wanted was for me to hold him and to eat. They ended up giving him some morphine because he was in quite a bit of pain and he had to be on oxygen that day and through the night. The next morning he was doing great though and they sent us home. He's doing really well and hopefully we'll be able to bathe him tomorrow. He has three incisions; one on his head, behind his ear and on his tummy. We can't get any of the wet and even though we've tried to give him sponge baths, he is still a pretty stinky little boy!

Early Intervention

Because Zach has spina bifida, he automatically qualifies for Early Intervention which is a program where different therapists come to our house. Kids Who Count is who does it in our area. They came and did his initial evaluation when he was about a month old and from there got us set up with a therapist. We started out with an occupational therapist, Mary. She comes twice a month for an hour each time. After a few months, Kim, the physical therapist started to come. She also comes twice a month. We've worked a lot on pushing up with his arms and lifting his head and sitting and rolling over. Zach starting to really sit by himself when he was about 9 1/2-10 months old, but he still has to support himself on his arms. He can roll over if he really wants to, but it usually has to be a pretty good incentive (like food).

He also started pool therapy in February with the physical therapist, Kim. We have to go down to Payson twice a month for his half-hour session. I think it has really strengthened his stomach muscles and helped him to sit up. It forces him to use them because if he doesn't, his face gets wet and he doesn't like that at all. He has usually screamed most of the session but last time did really well and only briefly cried when his face got wet.

This is a great program that will continue until he is three. The services are adapted as his needs change. He had a vision therapist come a couple of times when he was about three months old but those issues were resolved and she didn't need to come anymore. It is so nice that they come to our house instead of us having to run around for everything.

Zach is getting stronger everyday and it has been fun to see how he is adapting. He wants to be involved with his brothers and we want him to be able to do everything that he can.

Home and Adjusting...

Zach had to have a car seat test where they put him in his car seat and hooked up to the monitors for the same amount of time it would take us to drive home. Luckily, we only live one hour away so it wasn't too long and he did great during the test! We weren't even prepared for him to go home that day. They had said that probably Monday, maybe Sunday he would be released. So when everyone got there on Saturday and they said he could go home, we were surprised. Dad and Carlos had to hunt down a store to buy another car seat because they didn't even bring ours with them. It was crazy! So after packing up everything (it's amazing how much you can accumulate, even in the hospital), they let us go!

Here is a very tired dad with our other two boys shortly after we got home. It was fun to see how much they already loved him.

For the most part, it was just like taking care of a regular newborn. Except that he couldn't sleep on his back. That made me really nervous because we are told so much that babies should be put on their backs to sleep. We still had to put his diapers on backwards and use the plastic flap to keep his incision clean. We had to constantly be aware of his shunt and if he was having in signs of shunt failure. I remember that a few days after being home, he projectile vomited, which is one of the things we're supposed to look out for, and I freaked out. I brought him up to my mom and started crying because I was so worried that I wouldn't be able to tell when something was wrong. She comforted me, saying that I would know. He was okay but it was so worrisome.

He also had a lot of doctors visits, to have stitches removed, to check head circumfrence, to check weight and to check his shunt (a couple of other times it was being wierd). These were all on top of the regular well-baby check-ups. We were pretty tuckered out!

He has been such a good baby and I feel a lot of strength from him. I know that he has a lot to teach us and that he will be an example to everyone.

Our Hospital Stay

Holding Grandpa's Hand

We have amazing, supportive family and were so thankful for all of the love and concern they showed while we were in the hospital. We had so many wonderful visits which gave relief from the monotony of a hospital stay. Family helped us with our other children as well.

My parents came out and were at the hospital every day with us. It was so great to have them there. Thank you Mom and Dad!

The day after Zach was born, he went in for surgery to close up the sack on his back. The surgery really wasn't very long and he came through it like a champ. He still had to remain on his side or stomach for the next several days until the incision was more healed. He wore his diapers backwards because it was easier to change him. He also had to wear a little plastic "mud flap" (we had many names for it) to prevent any dirty diaper content from getting into his incision.

The nuerosurgeons decided to wait and see if he would need a shunt for sure. Before the surgery, spinal fluid was still able to leak out of his back a little bit but once they closed it up, we had to see what his ventricals would do. Unfortunately, his head size began to increase rapidly and we knew pretty quickly that he would need a shunt. The shunt would drain the excess fluid from his brain into his abdominal cavity where his body would just absorb it. He had that surgery on Thursday, three days after he was born.

Zachary recovered really well from his surgeries and because he was eating well and didn't need oxygen, they sent him home on Saturday, just five days after his birth. While we were so excited to have him home with us, I was also scared to death. We had to make sure his shunt was working and watch out for lots of other things. His brothers loved him and have been great brothers to him.

Zachary's Birth

We went to the University of Utah Hospital early on the morning of June 2, 2008. I'm not a morning person but I'm pretty sure that I didn't sleep much the night before and that I was ready to go. Carlos and I went up straight to the hospital while Mom and Dad got the boys ready and then dropped them of at Amber's before joining us in the pre-op room. I was so nervous. I hate new situations and places and it just made me that more anxious. The staff was wonderful and did everything they could to help me feel comfortable. They had to do several tests and blood work. The did an ultrasound to check the baby's position and confirmed what the doctor had told me a couple of weeks before (I didn't really believe him!), that he was breach. The medical team decided that because he was breach and because of his spina bifida, they would need to do a vertical incision on my uterus. This would reduce the risk of further damage to his the sack on his back and his spinal cord. They told me that I would never be able to labor at all in future pregancies and they didn't tell me that recovery would be a lot harder. At least it was for me compared to my previous c-sections. In the end, the surgery was put off for a couple of hours which made me even more nervous, not to mention the fact that I was starving!
They finally took Carlos and me back to the operating room and after more things that I wasn't prepared for, only because they were different from previous experiences, they started the c-section.
When Zachary was born he was passed immediately into the Neonatal Intensive Care Unit (NICU) and neither Carlos or I got to see him. The had to wrap his back with gauze and plastic wrap to prevent an infection entering in through the sack, something that could be very dangerous. The nurses did come in and tell us that his lungs were healthy because he was in there screaming. They also told us that he was beautiful.
Once we were taken to recovery, Dad and Carlos got to go into the NICU to see him. They gave Zachary a blessing. They also took pictures and a video. Then Mom got to go in. I didn't get to see him until the transport team came to take him over to Primary Children's Medical Center. I did get to see this video.


They brought him to me in an isolette. I didn't get to touch him but I was able to see a little bit of him and see that he was beautiful. I fell in love with him. He was only there for a couple of minutes and then Carlos and Dad accompanied the team over to Primary Children's.
When moms have babies that can't be with them, the UofU sends them to a different part of the hospital than the mother and baby wing. They go to the wing with the cystic fibrosis patients. The staff was so caring and helpful, they helped to make a difficult stay for a claustrophobic, panicky patient much better.
As soon as I was feeling better, someone (Mom? Carlos? Dad? I don't remember...) wheeled me over to Primary Children's to go and see Zachy. The two hospitals are connected which made going back and forth easy. I finally got to go in and see my beautiful Zachary. I'm afraid that I was never strong enough or prepared enough to look at the sack on his back. I just couldn't do it. I wish now that we had a picture of it so that I could have seen it later. Perhaps I just didn't want to see that his little body was not as "perfect" as I saw it.

What did we do?

We prayed.  A lot.  And family prayed with us.  We were given beautiful blessings and felt so much peace.  We knew it would be hard.  We knew that our lives would change.  We knew that this little baby was supposed to come to us.  

How did we prepare?  I don't know if we really did.  My strategy for surviving was to not research too much because most of the information on the internet was extremely terrifying and worst-case scenario.  And I knew that no matter what I knew, it wouldn't change things.  I learned what I needed to know and, as I felt ready, continued to learn new things.  But I didn't get his things ready because there was so much that we didn't and wouldn't know until he was born and even beyond.  I couldn't deal with the 'what if' questions and so I didn't.  That was my way of grieving.  Maybe I was in denial but I think that I just made a conscious choice to realize that things were in God's hands and that everything would be okay.  

And it was.  We have many trials and challenges ahead but we also have three beautiful boys to accompany and bless our lives as we press forward and constantly reach for new heights.

When we Knew

Most often, babies are diagnosed with spina bifida around the 20 week ultrasound but our story was a little different. My whole pregnancy was a surprise and I was almost four months along before I knew I was pregnant. A couple of weeks later I had an ultrasound to find out how far along I was and at that point I was already 17 weeks! We also found out at the same time that it was another boy! The doctor said that he wanted us to come back at around 30 weeks for another one because he hadn't been able to see everything because he was still a little too small.

In that time frame we sold our house and a few days before we had to move went in for the ultrasound. We could see that the doctor kept measuring his head and looking at it a lot. Finally he told us that the head was measuring bigger that the body and, while it was still in the normal range, he wanted to have it checked out by the perinatologist at Utah Valley Medical Center (UVRMC).

We moved that weekend and the next Tuesday went to UVRMC for the ultrasound. I was 32 weeks along at that point. A tech first took all of the measurements and then showed them to the perinatologist. She then came in and did another ultrasound and then left for a little while. When she came back she sat down on her stool and told us that yes, the baby's head was measuring bigger and that it was serious, that he had hydrocephalus, or water on the brain, and that the reason he had it was because he had a very serious condition called spina bifida, or a hole in his spine. She was very straight forward about the diagnosis and just told us things in a very matter of fact way. That's okay with me, I prefer to have things said as they are, not sugar coated. She said that he would probably never walk, that the hole was very large and that he would probably have bowel and bladder issues as well.

I will always remember how I felt as I lay there half-sitting on the table with Carlos by my left side. It is one of those surreal moments when you feel as if you are in another realm, being sucked into a hole and hearing the words as if you are in the bottom of a deep tunnel.

After giving us some time to ourselves, she talked to us some more and then had us go and talk to the genetic counselor. We were given some information but nothing that was really sufficient enough to accurately inform us of all that we would be facing. It was all mostly information on the medical "facts" of spina bifida and a couple of websites we could check out. The problem with that is that things have changed a lot in the last twenty years yet a lot of the information out there is very outdated and worst case scenario. Googling spina bifida and hydrocephalus is enough to scare the wits out of anyone. So after the diagnoses of spina bifida, most parents are terrified and so afraid of all of the unknowns. I will expand on this further in another post.

After the hospital we went home and told Carlos' mom who was living with us and then Carlos called and talked to my dad. We are so thankful for the wisdom and advice he gave us, for his spiritual strength and closeness to our Heavenly Father.
I think that we both knew, somehow, that this baby was going to be special--even before getting the diagnosis. We knew he had to come to our family and when we heard the challenges he would have, although devastated, we were also comforted and felt a measure of peace.

What is Spina Bifida?

Spina bifida is a major birth defect of a baby's spine. It is one of the most common, permanently disabling birth defects in the United States.
Spina bifida occurs within the first few weeks of pregnancy, often before a woman knows she is pregnant. It happens when the spine and back bones do not close all the way. When this happens, the spinal cord and back bones do not form as they should. A sac of fluid comes through an opening in the baby's back. Much of the time, part of the spinal cord is in this sac and it is damaged.
Most children born with spina bifida live full lives, though they often have lifelong disabilities and need many surgeries. Some of the problems that a person born with spina bifida might face include:
Not being able to move lower parts of their body. (Some might need to use crutches, braces, or wheelchairs to get around.)
Loss of bowel and bladder control. (Some might have to wear protective clothing. Others learn new ways to empty their bladders and bowels.)
Fluid building up and putting pressure on the brain (hydrocephalus), which needs to be fixed with an operation.
Learning disabilities.
Allergy to latex (a created material found in some rubber-type products such as balloons or hospital gloves).
All children born with spina bifida don't have the same needs. Some children have problems that are much more severe than others. Even so, with the right care, most of these children will grow up to lead full and productive lives.
(http://www.cdc.gov/ncbddd/folicacid/spinabifidabasics.htm)

Our Journey with Zachary

This blog is meant to share our experience with spina bifida and the effects it has had on us personally and as a family as well as the progress and challenges Zach faces. We love each of our children so much and are so happy that he is a part of our family. He is our little warrior.