One year later

In June 2013, Ian and I learned during our 20 week ultrasound that our son would be born with Spina Bifida, a birth defect of the spine that causes paralysis and affects many body functions. We were rushed to specialists in Roanoke and then later on to Philadelphia. We were scared, heartbroken and incredibly nervous on to what the future would hold. 

"For I know that plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29.11

One year ago --

We learned that we were having a son.
We learned that he was not what we expected.
We gave him a name.
We prayed.

One year ago --

We didn't know how blessed we were.

Our life has been changed forever since having Liam and we wouldn't have it any other way. Our new "normal" consists of  countless doctors appointments and therapy sessions. I can pack for trips to Duke in minutes and I'm pretty sure Ian could drive to Raleigh with his eyes closed if he had to. We have all gotten used to the trips of staying in hotels and hospital rooms. A year ago it all seemed like too much to handle but now it is the norm. 

Ian and I didn't know a year ago how much we would love being "Momma" and "Dada". Liam is all personality and makes us laugh every day till we have stomach aches. He has brought us so much joy and love that we feel we could burst at any moment. The "hard" days of dealing with Spina Bifida are few and far between. We wouldn't change a thing about Liam including his Spina Bifida. He is defined by his experiences and how he reacts to them. Everyone that has met Liam knows how much of a fighter he is. He has been working hard proving doctors wrong since the day he was born. Every piece of him (including his scars) is beauty.

So here's to Liam for making our dreams of being parents come true and for making every day wonderful!

P.S. On a sad note our beloved dog, Spence, passed away last week. He was our first "baby" and a wonderful big brother to Liam. He will be greatly missed.

To shunt or not to shunt....

The past few days have been a whirlwind to say the least. Liam had his Spina Bifida clinic last Thursday at Duke. He was scheduled to see all of his specialists and have some tests performed. When he met with his neurologists after his MRI we got bad news about his brain. Three of his four ventricles were larger than the previous MRI indicated and would need intervention to prevent damage to the brain.  Liam's brain is not able to fully absorb the cerebrospinal fluid, leading to excess fluid.  Without intervention, the excess fluid would cause increased pressure within his brain, possibly leading to permanent brain damage.  Luckily since he's still a baby, his head is still pliable and able to expand to accommodate the excess pressure.  He hadn't been showing any symptoms that are typically related to hydrocephalus (fluid on the brain) such as pain or vomiting.  However, we did find out last Monday when Liam met with his new PT that Liam is behind developmentally in almost all categories.  This delay is probably attributed to the excess fluid on his brain.  His is now scheduled for more intense therapy to help catch him up developmentally.  He'll also have his left leg casted to help straighten his foot to a more neutral position.  If the casting doesn't work, then he'll need surgery to stretch out his Achilles' tendon and get his foot back to neutral.  Right now his foot and ankle are so tight that he is starting to get a clubbed foot.  We'll going to try the casting first, but his orthopedist thinks that surgery will have a greater chance of success. 

Back to the brain:  We talked with Dr. Muh, our neurologist, in great detail about what needed to be done so permanent damage would not happen. Dr. Muh told us about a newer procedure (ETV, endoscopic third ventriculostomy) that many infants with myelomeningocile (his form of sb) and hydrocephalus have success with. We were hesitant because she said if it fails then he will need a shunt to be placed in anyways. Ian and I have dreaded the shunt since we found out he had SB in the womb. The shunt is the parents' and baby's worst nightmare since it malfunctions, moves, gets clogged, etc. and it requires lots of surgeries throughout his life. We decided on Thursday that we would just do the shunt and get it over with.

Flash forward to Tuesday morning at Duke and we are in the pre-op area. Dr. Muh tells us that she studied Liam's MRI all weekend and feels that he has a strong chance of high success rate with the ETV surgery and would we reconsider not placing the shunt in right now? We were both already a bundle of nerves and were shocked that she brought it up again. She gave us more info and told us that no matter what route we chose Liam is going to need surgeries as many SB kids and adults do and that shouldn't be our reason for not trying out the newer procedure. After talking and praying about it we changed our minds and off to surgery he went. Believe me, we both kissed that boy a thousand times and held on tight to him all morning. In typical Liam form he was in a wonderful mood even though he got up at 4:45 am and hadn't eaten any food since 7:30 the night before. And believe me he loves his food!

The surgery involved putting two small holes in a membrane in the third ventricle of his brain to allow an alternative route for the cerebrospinal fluid to drain and be re-absorbed. Yes, we allowed a doctor to put holes in our babies brain...we must be crazy! She tied his beautiful hair back so he didn't have to get his first haircut in the OR. Dr. Muh said that would just be horrible and I thanked her allowing me to give his first haircut. He was back in surgery for a little less than 2 hours. It was horrible waiting in the waiting room but Allison's parents came down with us and helped keep us company. Liam did great and she feels that this surgery will be successful. There is a chance of the holes closing back up since he is little and his brain is still developing but she is hopeful. Usually if a baby makes it to 6 months of not needing a shunt then the ETV works well. Time will tell.

Liam woke up from surgery and was groggy but overall in a good mood. This kid is a warrior! He got snuggle time with both Ian and myself and then Grammy and Granddaddy got to snuggle as well. We were left in recovery for over 5 hours since they didn't have a room for Liam once his procedure was complete. It was hard for him to sleep with all of the noise but he managed a few catnaps. He took to eating right away and never got sick. The nurses were shocked he didn't get sick because of all the anesthesia but I told them the kid doesn't miss a meal.

Last night was rough at the hospital. He was in a lot of pain and we kept trying to figure out what medicine would work the best. Poor Ian had to sleep on the floor as we only have one chair in the room. At least we have our own room. There was also a tornado warning this morning with sirens and all so that kept us alert and awake.

The resident doctor has already been by and said that as long as Liam continues to keep his food down he should be discharged at some point today. Dr. Muh will be coming by later with instructions and a follow-up appointment date next week. She did the surgery endoscopically so he has no scar, just three stiches on the top of his head. It is rather scary/amazing that they can do brain surgery on a 7 month old and then send him home the next day. We all can't wait to sleep in our own beds tonight.

Please pray that the ETV works and no shunt will be required. Please also pray for his pain to go away and for safe travels. Heavy storms are in our path all the way home today. Remember: God is Good!

Liam is 6 months old!

Liam is officially 6 months old. Time is flying by extremely fast. Everyone tells us if we blink for too long he will be grown and boy are they right. It has been a while since we last posted so we thought we would update everyone on how he is doing. We have had our first Christmas, Valentine's day and big snow since our last update.

Christmas Smiles

Liam's First Christmas

Liam is doing great and is gaining weight by the second it seems like. Our little boy was 3 lbs when he was born. Preemie clothes were too big and swallowed him up. That is not the case these days. The last time we weighed him he was 16lbs. He is still rather short for his age but is getting rather pudgy. He finally made the growth chart at 1% the last time he was at his pediatrician. We have a feeling that he is higher than that these days. 

He has recently started eating oatmeal cereal. He hated rice cereal so the doctors told us we could try oatmeal. So far so good. He is a very happy baby. He greets us every morning with a big smile on his face. Liam laughs, coos, and screams with delight all the day long. He will flirt with anyone that gives him any attention and is becoming quite the ham. He still only cries every now and then. Does this mean his teens are going to be horrible?!? Recently during one of our warmer days he went to the park with his big cousin Carter. He still loves bath time, walks and his dog, Spence. His new favorite thing is his baby jumper. 

Carter and Liam

We are in the process of getting Liam a new physical therapist. Hopefully we will get it squared away soon. He is meeting most of his marks developmentally but still needs to work on some others. We are hoping things will move in the right direction once his new therapist starts. He loves his babysitter and we feel very lucky to have Meme take care of him everyday while we are at work. 

We have been to Duke every month since we have been home from Philly. We will be making the drive in a couple of weeks for Liam to see the eye doctor. We will then go back in April for his spina bifida clinic with the four specialists. We will split that visit up and spend some of the time at Duke's Hospital for he is in need of more testing. Those days are extremely long but we all make it through and cough it up to being a normal part of our lives now. We will do whatever it takes for Liam to have everything that he needs.

Mommy and Liam at the last Duke appointment

The orthopedic doctors at Duke have mentioned to us a couple of times about Liam having surgery on his left foot when he is school age. His foot is just growing too much now for it to be done in the immediate future. His left foot has been misshaped since birth. The tendons in his ankle are so tight that it's affecting the development of his foot and lower leg. He will have surgery to loosen the ankle tendons. At the last visit they also told us that he no longer needs to wear his right AFO. He still has to wear his left one and will likely have to for the foreseeable future.

As far as neurology goes he still has not needed a brain shunt. The neurosurgeon says he has gotten more fluid on the brain but it is still relatively stable. She says that if we make it to the one year mark then we will probably be home free on not needing a brainshunt. His back scar from his closure surgery after he was born has healed very nicely and is not as red. It is still very noticeable but we are the only ones that actually see it on a daily basis.

The urology doctor is pleased with how Liam is doing so far at this stage in the game.  The developmental pediatrician and urologist wants to start a bowel management and urinary plan when he is two years old. The goal is by the time he is school age he will be able to be be self-sufficient so he won't rely on us for this bathroom needs and have the stress of incontinence during his school-age years. The goal is to make him self-sufficient for a successful life on his own.

Our little ham

We have placed Liam in God's hands from the very beginning. The good Lord has taken such good care of us and has given us peace and patience through all of our adventures. We are trusting Him through everything. Please continue to pray that Liam meets all of his developmental marks and does not require a brain shunt. 

Merry Christmas

Merry Christmas everyone! We wanted to give a quick update on how well Liam is doing.

We traveled down to Duke last week for Liam to have some urological and neurological tests completed. He passed his urodynamics test with flying colors. He even managed to stay still while they completed the hour and half test, which was a miracle. He didn't seem to be too bothered by the whole experience even though Ian and I felt horrible through the whole thing. Luckily, they let us stay with him the whole time so that helped him and us both. His urologist said that his kidneys and bladder are completely normal. Many mylo babies and adults have both bladder and kidney problems and we feel completely blessed that they are functioning normally for now. He is off of his antibiotic that he has taken since he was a few days old. The antibiotic was taken as a precautionary until this test was completely so he wouldn't get a kidney infection. He was very tired afterwards and just wanted to cuddle so of course I obliged.

Waiting for the results from the test

While we were waiting for the next round of test we took a break and had a family photo-op in front of the hospital's Christmas decorations and fed a very hungry and tired baby.

A very tired Baby Liam after his first test was complete

He next had two ultrasounds. By this point he was a wiggle worm and tired of being messed with but he never got fussy or cried. He just wouldn't lay still. We were fortunate that the technician was patient and let him move around a bit. We truly do have a calm and happy baby.

 We head back the end of January for him to meet with spina bifidia clinic (his four specialists). Hopefully, it won't snow then...it can however, snow any other time so Mommy can have snow days with her lovebug. 

Liam is changing and growing every day. He is more vocal than ever before. He laughs, coos and talks up a storm all day. He has also learned how to roll over! Liam finally hit the double digits in weight...we never thought that would happen! 

Liam likes laughing at Mommy's funny faces

Snuggle time :)

Liam made his theatrical debut as Baby Jesus in the church cantata. He managed to steal everyone's hearts and didn't even cry once! There were however joyful tears from more than a few audience members. 

Liam met Santa for the first time with his big cousin, Carter. 

We wish everyone a very Merry Christmas with their loved ones. Please take time to remember the true meaning of the season. We thank God every day for our "miracle baby" and know that without God's grace and everyone's prayers Liam would not be doing as well as he is. We are filled with joy everyday.

Happy Thanksgiving!

Happy Thanksgiving from the Camper Family! We are feeling extra blessed these days and have a lot to be thankful for. Liam is doing wonderfully and is changing so much everyday. We know that things could have gone a lot differently which makes us even more grateful this holiday season.

We want to thank all of our family and friends for their continuous prayers for Liam. We truly believe that everyone's prayers are the reason he is doing so well.

Here is a short update on Liam in pictures because we know that is what people like the most.

1. Our little peanut is catching up fast in the weight department. He is no longer just skin and bones. Oh does the boy have some jelly rolls on his thighs and arms. He is quite our little chunky monkey rounding in at just under 9 lbs (he's tripled his birth weight)!

Our little peanut at CHOP

Look at those cheeks!

2. Spence and Liam are still best buds and enjoy taking naps together.

3. Liam has started smiling, cooing and giggling which we can't get enough of.

4. Bath time is still an all time favorite of Liam's.

5. We have also learned that Liam LOVES music. His mobile plays classical music and he gets very upset whenever it turns off. He coos, giggles and "dances" when he is listening to any type of music. Maybe he will be a musician one day?!

This is a video capture of Liam giggling while listening to music

Overall, we have a lot to be thankful for this year. Ian has started back to work full time in his office and Allison heads back to work this week. We are both looking forward to celebrating Liam's first Christmas in a short few weeks. We head back to Duke in mid December for Liam to have some tests and a procedure completed. Please continue to pray for him and that everything goes well. 

We hope everyone has a wonderful Thanksgiving with their families. 

Happy Halloween and Duke Update

First of all, Happy Halloween! Liam's original costume got lost in the mail so this will have to do for now.  If it ever comes in we'll be sure to post pics. We still think he's cute!

Liam had his first spina bifida clinic today and it was a doozy. We met with doctors for 6 hours! We are all tired to say the least. Liam did amazingly. He was very cooperative all day with people messing with him. Liam didn't cry at all until we were leaving and that was 6 hours in. All the doctors said we are very lucky to have such a calm baby. We already knew that! 

Right now we still don't have any more answers than we did before. We met with urology, neurology, orthopedics, and a special neurodevelopment pediatrician. They were all impressed with Liam so much. They do think that he will WALK one day which is an amazing blessing. They are still uncertain about his bladder/bowel control and how that will change as he gets older. However, they do believe that with a management plan in place he will live a very normal and fulfilling life.  There is still a 50/50 chance that he'll need a brain shunt.  His ventricles are enlarged and have increased slightly over time, but the neurologist said it is nothing major right now.  She'll continue to monitor it through regular ultrasounds but right now she was very pleased with how things looked.  The fluid on his brain hasn't increased and his head circumference is appropriate for his age. 

Liam got another pair of AFOs to wear since his ones made at CHOP are too small now. They are lighter and clear (lime green wasn't an option) so they won't stand out as much. He has to wear the left brace more often than what he was before, including at night, but we can cut back on the right brace usage. We will have to come back and get another pair made in about 6 weeks since he will more than likely out grow this pair by then.

Speaking of growing, Liam is 6 lbs 14 oz. That means he grew 11 oz in one week and has officially doubled his birth weight. We visit his regular pediatrician on Monday and we are guessing he will be 7lbs! Our peanut is growing. 

We will travel back to Duke in about a month to have some urology tests completed as well as some neurological ultrasounds. We will then come back in 3 months and meet with everyone again.

He is starting physical therapy soon. We are in the process of setting it up. We are enjoying being at home with our little man. Ian goes back to work in three weeks and Allison starts back the beginning of December.  We are still trying to find someone to watch him when we go back to work.  Hopefully we'll find someone in the next few weeks. 

Sorry for the delay...we are doing GREAT!

Sorry for the delay. We have been adjusting to life at home with a cute baby! We are doing great and are loving being a family of three...plus Spence the dog!

Liam loves bath time!

We just got home from Liam's pediatrician appointment. Just wait till you hear how much he weighs! Ian and I were taking bets on how much he weighs. Well, we both lost. We both figured he would be 5 lbs something, but wait for it...he weighs 6 lbs 3 oz. What happened to our little peanut?!? We knew he was getting bigger because the majority of his preemie clothes don't fit anymore but unfortunately the newborn clothes are still a little big. We have been rolling up pant legs like crazy over here!

Lounging at the doctor's office. He is a
very laid back baby!

He is eating like a champ and the pediatrician actually recommended upping his ounces in order for him to sleep better at night. While he sleeps excellently during the day, he was getting up quite a lot in the middle of the night. We hope this helps because Mommy and Daddy are very tired these days. Where are all of the NICU nurses that called dibs on feeding him? We could use them now...road trip anyone!

This is what happens when Mommy goes
to the store...Daddy and Baby do selfies!

The doctor was impressed once again at how well he is doing. He is awake for periods of time now to which we love. He loves reading books and laying on his play mat. Luckily, he isn't a fussy baby. He is pretty happy most of the time. He only cries when he is hungry. He is moaner and a groaner but we will take it over crying all day long.

Monkey see..monkey do

Liam has met all of his cousins, aunts and uncles and even his great-grandparents! We have had a steady flow of people at the house and love introducing everyone to Liam. Everyone is already in love with him...I have a feeling someone is going to be spoiled and it might not be from Mommy and Daddy.

Carter holding Liam and the bag of trains he gave him!

Liam and Spence, our dog, are still getting along great! Spence is never too far away from Liam unless someone is in the kitchen cooking. He is a lab afterall. They even take naps together! Spence sleeps outside of Liam's room each night and immediately smells him whenever we walk in the door from the doctors appointments or errands.

Naptime

Liam still has to stay away from crowds of people for some time still. The doctor said once he gets his immunizations he should be able to go out more, which will be in a couple of weeks. We still have to be careful though, especially with flu season. Don't worry Mill Creek, your stop will be one of the first ones we make! We can't wait to come to church and introduce Liam to y'all and thank you for all the prayers.

Daddy and Liam

Mommy and Liam

We have a lot of appointments for Liam next week. On Wednesday we meet with Early Intervention to work on getting him his physical therapy setup. He hasn't had any since we left CHOP. We have been stretching his legs daily but he still needs his PT time. On Thursday we will be at DUKE all day meeting with the Spina Bifida Clinic. He will meet with a team of specialists. We hope to gain more knowledge on his condition and what to expect for the future. Right now we are enjoying the calm before the storm so to speak before all the doctor appointments overload us. We promise to update once we are home from that trip. Thankfully, Liam doesn't seem to mind the car ride (he did travel 9 hours on his first car ride).

Six weeks old

We will also post pictures of Liam in his Halloween costume next week. It's adorable. Sorry for the long post but we know everyone wants an update (yes, we got the hint that we needed to update) and of course everyone wants to see tons of pictures.