Hoppy Easter!

It has been a month of many firsts. Kyle's first tooth. His first Easter. His first sip of milk. His first time saying "mama". His first month without a MRI. (Guess which I'm most excited about? You're right- him saying mama. But not needing a MRI is a pretty darn close second.)

There's not much news to report on Fred (because, you know, he hasn't had a MRI!). The cyst growing on the back of his skull is slightly larger but nowhere near the size it would have to be to prompt his surgeon to remove it. His head is growing at an appropriate pace and we are very hopeful that his MRI in late May will be similar to his last scan four weeks ago. (We also don't have any news on the neurologist front because his neurosurgeon told us to cancel those appointments. We have enough doctors. He can handle the neuro stuff. Have I mentioned how much we like this guy?)

On Friday, Kyle's feet will be cast so they can create a mold for his new orthotics (we will be referring to these hence forth as his magic shoes. Or at least his mother will). He has a mild deformity of his right foot that needs to be corrected and they will also be designed to help him learn to bear weight appropriately on his left leg. He is doing very well in PT and has made some great strides this month. He is pulling himself to sitting from his side and can pull up from his stomach to his knees. We are very proud of him! 

What's next: 

Continued weekly physical therapy

Pulmonologist May 2nd

MRI/neurosurgeon in late May

First birthday on April 15th and superhero party on the 18th! Our victorious boy will be ONE soon! 

Thank you for your continued prayers! We are thankful for the love of Jesus and that we fight this battle not FOR victory but FROM victory for He has already overcome this world. --John 16:33 

11 Months!

This is the face of RSV. Such a sad face, right? 

You'd never know it from looking at him, but our sweet boy has been stuck in a season of sickies. He came down with RSV a couple of months ago. That lead to bronchiolitis and an ear infection. Then there was a stomach virus  (round 1 and 2). Then another ear infection. And now RSV again. We've really gotten to know the staff at the pediatrician's office! 

Otherwise, Kyle has been doing very well! He turned 11 months old this past weekend and has been making lots of progress in motor development. He can go from sitting to all fours (no quad crawling just yet) and from all fours back to sitting. He is also able to pull from sitting onto his knees and stand with little support. His balance has improved a great deal and he has become very efficient at army crawling! We are so proud of him. 

His next neurosurgery appointment isn't until the end of MAY. We are so thankful for a break from long days at the medical center and from all the imaging. 

We are using our newfound free time to plan his BIG birthday celebration in mid April. Our victorious boy will be one soon!!! 

Currently, we are praying for complete wellness over our little guy and for an uneventful three months between neurosurgery appointments. He doesn't have any big appointments again until May, when he will see the neurologist again, have his pulmonology consult and see his surgeon. His next MRI is also scheduled for late May. 

Replacing our thoughts of worry with thoughts of hope, faith, and VICTORY!

10 Months!

Today Kyle turned 10 months old. We can't believe that our sweet boy is so quickly approaching his first birthday. 

His PT sessions have increased from one session every other week to once per week. He is making a lot of progress! He can roll both ways, sit up without support and army crawl- all milestones we were told that he might not ever meet. He is currently working on learning to push up to sitting from his side and balancing himself on all fours. We are so proud of him!

He sees the neurosurgeon again on March 3rd. Thankfully, he isn't having a MRI- only a quick head measurement and exam. His head circumfrence increased a little more than we wanted between his last two appointments. A steady abnormal increase is a red flag for rising intracranial pressure, so we are praying that there isn't much change this time around. The surgeon will also examine the cyst that is slowly growing on the back of his skull. If it continues to grow, he will need a minor surgery to remove it. 

He saw the ophthalmologist for a check up last week. She was genuinely surprised at how well he is developing and didn't see any cause for alarm regarding his eyesight. He doesn't see her again for another year! He also had a hip xray last week to rule out hip dysplasia as a cause for the reduced movement of his left leg. We were relieved when it came back normal! His pediatrician still wants him to be evaluated by a pediatric orthopedic surgeon but we are confident that he does not have any orthopedic concerns.

He also has been referred to a pulmonologist for evaluation for reactive airway disease. This is a scary sounding way of saying "baby asthma". He does fairly well but requires nebulizer treatments any time he is ill and occasionally has short periods of apnea while sleeping. We believe these episodes are related to acid reflux but his pediatrician ordered a sleep study to further evaluate this issue. This has been scheduled for late March.

So, lots of doctors and appointments coming up! But he is doing so well and we are so thankful! 

What's next? 

- Neurosurgeon March 3rd

- Pulmonary sleep study March 29th

- MRI in early April or May

- Neurology follow up in late May

- Orthopedic Surgery consult

- Pulmonology consult 

  (His mother needs to schedule these!)

Thank you for your prayers! 

Nine Months Old!

Kyle is having a busy week! He had a MRI and saw his surgeon on Tuesday, we met with his neurologist and received his 23 hour EEG results on Wednesday and his 9 month well child exam is on Friday. His mother needs a nap. He apparently does not.

Due to some concern over weakness in his left leg and arm, his MRI that was scheduled for February was moved up to Tuesday. Thankfully, it was nearly identical to his December scan, meaning cyst growth is stable and the cyst fenestration is working. His next appointment with the surgeon is in mid February and the next MRI will be in 2-3 months. The only immediate surgical concern is a cyst that is slowly growing on the back of his skull. It might need to be removed but it would be a very minor procedure. 

His neurologist had some concern about the weakness on his left side, particularly in his arm and leg. She diagnosed this as a form of cerebral palsy called hemiparesis (sometimes referred to as hemiplegia), which basically means weakness on one side of the body. His weakness is mild, and while he will need physical therapy to help him learn to accommodate for this weakness, it is not expected to prevent him from eventually meeting his motor milestones. 

The GOOD news is that his 23 hour EEG came back NORMAL! This means that he is not having seizures and does not need anticonvulsant medication! Yay! 

As always, we are so thankful for everyone's kind words, thoughts and prayers. Our sweet boy truly is a miracle baby. Thank you Jesus!

Merry Christmas!

Repeat the sounding joy- the Lord has come! 

It's Christmas time and we are so joyful to be sharing this time with our sweet boys. Baby Kyle is taking it all in- and enjoying every moment of it. His two older brothers are counting down the hours until Christmas morning. We had an early Christmas with grandparents Mop and Pop, Uncle Brett and Aunt Jill, and cousins Addie and Annie this past weekend. We had so much fun! We will be spending this week with Brian's family and are especially thankful to have Aunt Kelly in town from Richmond, VA. We are having a very busy but very wonderful holiday! 

Kyle's latest MRI looked good. The cyst is now communicating with the other fluid filled spaces in his brain and we remain hopeful that he will not need a shunt or more neurosurgery. His next MRI is on February 10th.

His most current medical concern is a small mass that has formed on the back of his head, near his neck. He will be having a sonogram soon to determine if this is a enlarged lymph node or a type of cyst. We are praying that it is harmless swelling of an occipital node and that it will self resolve without the need for another (minor) surgical procedure. 

This Saturday, the 27th, he is finally having the dreaded 23 hour EEG. We believe these results will be negative for seizure activity but are not looking forward to another hospital stay. We are, however, looking forward to getting it done and over with!

Prayer Requests:

- A quick and uneventful 23 hour EEG

- That the mass on his scalp is harmless and will self resolve without surgery.

- An uneventful 8 weeks in between appointments and another good MRI scan in February.

As always, thank you for joining us along this journey. Baby Kyle is a very blessed baby boy and we are blessed to have him. 

Wishing you and yours peace, love and JOY this holiday season!! 

Thanksgiving

This time last year we had a lot to be thankful for. I was nearing the halfway mark in my pregnancy and we were just a few days away from our official 20 week anatomy scan. We had also just discovered that we were expecting another boy and had decided to name him Kyle. Life was good. 

Little did we know, our lives were about to change forever. In spite of a completely normal 20 week scan, we would discover a short 8 weeks later that our baby boy had significant brain damage. The corpus callosum, the largest bundle of fibers within the brain that connect the right and left hemispheres, was completely missing. He had extensive areas of cortical dysplasia- areas with abnormal brain folding. He also had a very large interhemispheric cyst growing in his brain causing mass effect on the surrounding tissue and had hydrocephalus as a result. No one knew what life would be like for our baby. 

If you had told us last year the journey we were about to embark on- that our baby would need two brain surgeries, 13 MRIs, 5 hospitalizations and 7 ER visits just within his first six months- we would imagine this Thanksgiving to be a somber one. But a little bit of perspective changes things. A little bit of hope changes things. And that smile? That smile changes EVERYTHING. 

We are blessed. 

Happy Thanksgiving! 

Counting it all Joy

Today, I took Kyle on his first grocery store outing since his surgery. It was beautiful outside and it felt so good to get back to our normal daily routine. I tucked Kyle's infant carrier in across the width of the cart and he was asleep just a few minutes into our shopping trip. 

I strolled the entire width of the store and eventually found my way to the produce department. A woman approached to congratulate me on my adorable baby. She was in the midst of telling me how quickly babies grow and what a blessing they are when Kyle shifted in his sleep, turning his head and exposing his week old surgical incision. She gasped and quickly shuffled away, murmuring something about my having a blessed day. 

My joy sunk into despair. Tears threatened to spill over, anger began to swell and I came uncomfortably close to being featured in a "meanwhile at Walmart" meme. I found my composure and headed towards a check out line. 

As I was loading my groceries into the van, feeling emotionally defeated and done, Kyle stirred again and flashed me one of his sweet, gummy grins. It was then that I realized that the day's blessing was mine to claim. I had not been robbed of joy by a stranger in Walmart. It was she that had been robbed by uncertainty. She would leave not knowing what a blessing he truly is and the miracle that is his being. She would leave not knowing the extent of God's faithfulness throughout his young life and how powerful one little toothless grin can truly be. 

Today, I rejoice in knowing.

Surgery #2

Kyle's second surgery went very well! They were able to accomplish everything they wanted and he did very well throughout the procedure and recovery. He spent two nights in the hospital and is now completing his recovery at home. We are very proud of our brave boy. He has been through more in his first six months than most of us will go through in our lifetime. And he did it all with a smile. 

For more pictures, click here:

http://flipagram.com/f/LSUxQirFWd

What's next? 

- First post op MRI/neurosurgery consult on November 18th

- Continued bi-weekly physical therapy

Happy Halloween

Here's our sweet little pumpkin! (Not everything has to be about brain cysts and hydrocephalus, right?!)

Surgery #2

"Operating on a child that looks this good is always a difficult decision to make".

We are big fans of Dr. Sandberg. He's been Kyle's surgeon since before he was born and has always been straightforward and honest with us. So when he told us that the decision to operate again was a difficult one but that the risk of waiting now outweighed the risk of a second operation, we knew it was time. It was a hard choice to make but we believe that it is the right one. 

Kyle's second surgery has been tentatively scheduled for early Friday afternoon. His MRI on Tuesday showed more cyst growth and enlarged ventricles (the fluid filled spaces in the brain). The goal of this surgery is to better connect the cyst(s) to the ventricular system of the brain and to coagulate parts of the choroid plexus- the part of the brain that produces spinal fluid- so that he doesn't produce as much fluid. The surgery is very similar to his first. It will be endoscopic and preformed through a small burr hole in the back of his skull. His recovery time in the hospital should be a brief one or two night PICU stay and we are hopeful his recovery will be swift and complete. 

Please pray for the following-

* That the surgery is successful and eliminates the need for a shunt.

* Kyle's medical team. Specifically rest and steady hands for his surgeon. 

* That Kyle's discomfort is minimal and that he recovers quickly and completely. 

* Zero post-op complications. Pray for zero infections and against a subdural effusion/hemorrhage. 

Thank you!!!!

17 Evening, morning and noon
    I cry out in distress,
    and he hears my voice.

Psalm 55:17

Miracle Baby

I usually dread seeing Kyle's neurologist. She hasn't always been very positive about Kyle's long term prognosis. She told us before he was born that he'd be at high risk for a multitude of issues, mainly epilepsy (possibly retractable- meaning not able to control with medication), cerebral palsy and developmental delays. She said it was possible that he'd have milestones that he'd never hit. That he could be severely intellectually disabled and unable to ever care for himself. He might not talk. He might not hear or see. 

Today was different. She said seeing him was the highlight of her day. That she'd never match his MRI scans to his current abilities. That he is a "miracle baby". 

We agree. "Kyle" in Yiddish means "victorious". We didn't know this when we chose his name but it's something we've clung to since first receiving his diagnosis at 28 weeks pregnant. Our baby boy would be victorious. His life mattered. No matter what. 

On Tuesday he will have a MRI and MRA. The MRA is to look for any recent ischemic events. Three weeks ago, I found Kyle in his swing looking like this...

Only half of his face seemed to be working. We took him to the ER and the asymmetry had already faded away. He was sent home. Today the neurologist noticed that his left leg is smaller than his right and he doesn't seem to be using his left side as effectively as his right. He can freely grab objects with his right hand, but has problems grasping things he wants in his left hand. It is VERY unlikely he had an event, but we are looking anyway. And she wants the 23 hour eeg to rule out seizure activity. 

Thankfully, we've managed to stay out of the ER since our last neurosurgery visit. We see the surgeon again on Tuesday and will be celebrating this feat. I feel like Kyle deserves a medal, but "miracle baby" will certainly do! 

What's next:

-MRI/MRA/Neurosurgery appt Oct 28

-23 hour EEG to be scheduled 

Happy October!

Baby Kyle is doing great! He's a happy little boy. He can roll both directions and sit using his hands for support. His physical therapist even said she thinks he is trying to shuffle forward when he is on his tummy! He will be six months old next week and we can hardly believe it. He is such a JOY. 

He LOVES the neurosurgeon's office. It's a good thing since we've been seeing so much of him lately! Last week was an eventful week. Kyle spent another night in the hospital for observation with vomiting. Thankfully, he improved and was able to come home. His MRI though showed an increase in both cyst and ventricle (fluid filled spaces in the brain) size but a decrease in the amount of fluid/blood surrounding the brain. 

A lofty goal! 

He had a follow up appointment with the surgeon yesterday and we discussed his surgical options, if surgery becomes necessary. Kyle's hydrocephalus is a little more complicated than the typical case and a shunt simply isn't a good option for him. So, our next step would be a second surgery similar to the first, where the surgeon will try to accomplish what he was unable to accomplish the first time by going in at a different angle and from a different position. 

Our hope is that Kyle won't need any surgery. If he does, we hope and pray the second surgery is a success and that it will eliminate his need for a shunt. His next MRI is in three weeks and we are hopeful that he will have a restful and uneventful break between appointments.

Thank you for your continued support and prayers. Kyle is a well loved little boy!

What's next-

-Neurology follow up Oct 22

-MRI and Neurosurgery follow up Oct 28

-Continued physical therapy bi-weekly

Hydrocephalus Walk

Go Team Kyle! We raised over $3,000 at our first annual hydrocephalus walk! It was held at the Houston Zoo and the kids had a blast. We came home with all kinds of goodies: Memorial Hermann water bottles, a brain shaped stress ball, hydrocephalus bandana and an awareness ribbon for our van. Most importantly, we were able to connect with other hydrocephalus families. 

Kyle is a little too young to appreciate the zoo but had a blast seeing his family and friends. Thanks so much to everyone who supported Team Kyle. We love y'all! 

What's next for Kyle? 

- Kyle continues to have biweekly physical therapy sessions through ECI.

- He has a MRI and neurosurgery follow up on October 7. 

- Follow up neurology appointment on October 23rd. 

Baby Pukes-a-lot

Another week, another ER visit. 

On Monday, Kyle was sleepy and pukey. So, we made another trip to visit our ER friends and had another MRI. The last MRI showed a return of Fred but also a decrease in the fluid/blood collection around his brain. This MRI showed a similar cyst size but also a second cyst growing beneath Fred. 

Kyle's surgeon is "concerned". We've learned over the past few months that the surgeon has three levels of concern. "I'm not worried" means, "yeah, there's something abnormal but I don't think we'll need to operate anytime in the near future or maybe even never". "I'm concerned" means, "Prepare yourself. We might need to operate soon". And "I'm worried" means.... well, we don't want to know what that means. 

So, he's "concerned". Darny darn darn DARN. 

On the bright side, he's "hopeful" that we can still avoid the OR. We're hopeful, too. It's nice to have a hopeful surgeon. We aren't complaining there. 

So the plan is to have a follow up MRI in four weeks to see if there is further cyst growth and go from there. I'm worried and I'll admit even a little scared. I don't want my baby to have a second brain surgery. I don't want him to have ANY surgery. 

Lately I've been asking the why question. Not the genetic logistics of how this happened but the spiritual "why did this happen???". And I've learned that "why" is a joy stealer. A theif. A common criminal. It takes joy and turns it to pain. And it takes the focus away from the questions we should be asking. 

Like "who". Who is my child? Kyle is a child of God. A child born into this world with a purpose and a plan. What is my child? He is a happy little boy who loves to smile, laugh and play. He smiles at everyone, even the tech that straps him onto the MRI table.... over and over again. He smiles at the nurse that starts his IV. And at the surgeon that decides if or when he will have to endure another operation. In the words of big brother Michael, he is a delight. 

And we are thankful. 

Great looks. Bright future. We believe it!

A MRI, Hospitalization, and Visit From Fred

We missed Kyle's weekly ER visit last week and couldn't stand being away from the medical center so long so we packed a bag and headed to the ER to say hi. We had such a good time catching up with our favorite MRI techs, residents and surgeon that we decided to get a room! Such fun! 

Not really. Kyle is vomiting. This is our third ER visit and second hospitalization this month. Not that you would ever see any emotional distress from Kyle. He laughed when he was strapped onto the MRI table and smiled when it was time for his "just in case" pre-op bath. He's been cooing and flirting with his nurse. He probably thinks the surgeon is his uncle and the MRI machine is a fun photo booth. 

I'm not doing as well. I'm tired. And worried. His MRI showed an increase in cyst size. Fred is back and wreaking havoc again. We were admitted last night and told it was possible he'd be back in the OR this morning. Thankfully, the vomiting improved overnight and it looks like we'll be going home this afternoon with a follow up neurosurgery appointment in one week. So, no surgery today. But maybe surgery next week. Or the week after that. Or the week after that.... sigh. 

We knew that life with Kyle would be an adventure. It's one we eagerly signed up for and would sign up for over and over again. He's such a joy and blessing. Just one snuggle from this sweet boy makes every moment spent in the ER, hospital, surgeon's office and OR waiting room absolutely worth it. We continue to put our hope and trust in Jesus and eagerly await the day our sweet boy can put the MRIs and surgeon visits behind him. God has big plans and a bright future in store for Kyle and we are so very proud of him. In the meantime, we continue to pray for peace, healing and rest. 

An Eventful Week

2 ER visits, 2 MRIs and one hospital stay. It's been a busy week. 

The fun started last Monday when Kyle woke up vomiting. A little bit of throw up isn't a big deal for most babies but it can very easily mean an ER visit for us. Once we hit the 3+ mark, Kyle was sent in to the ER by his neurosurgeon to be evaluated for increased intracranial pressure (read: another MRI). The MRI showed an increase in the fluid surrounding his brain and a "tiny" amount of blood but no signs of ICP. He was diagnosed with viral gastroenteritis and we went home. 

I spoke with the surgeon the following Monday about some concern over the bleed that showed on the MRI. He again assured me that it was inconsequential and everything was stable. Tuesday morning I left the baby to nap in his bouncer while I attended to the older boys upstairs. When I returned to check on him, I noticed he was not breathing and he did not immediately respond when I tried to arouse him. My screams finally startled him and he began breathing again. I put him in the car and headed back to the ER to be evaluated. They put in an IV and drew labs. Then we were sent for another MRI, which showed no increase in fluid but an increase in the amount of blood in the subdural space. Kyle now has bilateral subdural effusions that are mixed with blood -- but no ICP. (This was not the cause of his apnea spell but it means more frequent appointments and scans and increases the chance that he will need surgery to drain the fluid). All of his labs then came back clean and he was admitted overnight for observation. His neurologist came to visit the next afternoon and said that she believed he had a seizure. We are now awaiting a call to schedule a 23 hr EEG and are hoping and praying that this is not the case. In the meantime, we are keeping a close eye on him at home. He sees the surgeon again on Tuesday and has another MRI in four weeks. 

Kyle takes it all in stride and remains a very happy baby. We long await the day his MRI comes back clean and he doesn't have to spend so much time in doctors offices and in the hospital/ER. Until then, we are grateful for his medical team and that we live so close to the Medical Center. We really are blessed and believe that God has big plans for our sweet boy!

Three Months Old!

How time flies! 

Kyle had a two week check up with the surgeon yesterday. He did great! His head growth seems to be slowing and there were no signs of increased intracranial pressure. His next MRI/follow up is in one month. We are still praying that the fluid surrounding his brain is absorbed into his bloodstream and that the MRI doesn't show any cyst growth. 

Kyle is also doing well in physical therapy. He is visually tracking faces and is doing better with holding his head at midline and occasionally turning it to the left, instead of keeping it turned to the right- his favorite side! He is starting to develop a flat spot on that side of his head, so we are working extra hard at this! 

What's next:

EEG on July 25th

MRI on August 12th

Neurology follow up in mid August

A Good Week!

Kyle's opthalmology consult went great! His eyes are structurally perfect- all the nerves are fully developed and functional. We are so thankful!

Today Kyle had his second post-op MRI. It was moved up a week because of some concerns over head growth. The MRI looked the same as his last one, which is good. He showed no signs of increased intracranial pressure and doesn't go back for two more weeks. Yay!

His incision was cleaned today, too and is nearly fully healed! Thank you Jesus. 

Before and after!!

What's next?

- Neurosurgery follow up appointment on July 15 to check for signs of increasing intracranial pressure. No MRI. Yay!

- EEG on July 25

- Neurology follow up in early August

Prayer Requests and Upcoming Appointments

What's next for Kyle?
- Opthalmology consult on June 30th
- 2nd post-op MRI and neurosurgery appointment on July 8th
- EEG on July 25th
- Neurology follow up in early August

Please pray:
- that the extra fluid that now surrounds Kyle's brain is absorbed into his bloodstream and that he won't need an additional surgery to drain the fluid.
- that his eyes show no congenital deformalities
- that the fenestration surgery continues to be a success and that Kyle won't need a permanent shunt.
- that his EEG shows no abnormal brain activity.

Thank you!!

Surgery.

One Tuesday in late May, we took Kyle for his fourth MRI and neurosurgery appointment. We were hoping for another quick check with no signs of increased intracranial pressure and no cyst growth. Fred, the cyst, had other ideas. This is what we saw when the surgeon pulled up the MRI images...

The large white area is all Fred. The smaller white areas on either side of the cyst are Kyle's brain ventricles. The surgeon said it was time to intervene surgically and an endoscopic cyst fenestration and third ventriculostomy (ETV) was scheduled for that Friday. The surgeon warned us that the surgery might fail and another surgery would then have to be done to place a shunt that would drain the fluid from the cyst down a tube and into his abdomen. We prayed and felt very strongly that God wanted us to try the endoscopic surgery, which was a much better option for Kyle long term and would eliminate the risk of future surgery for shunt revisions, infections and malfunctions down the road.

The surgery took about 2 hours to complete and went perfectly for Kyle. He had no complications from anesthesia and was alert when we saw him in recovery. We were expecting a minimum of 3 nights in the hospital but he did so well that he was discharged 24 hours after surgery to recover at home! However, they were not able to connect the cyst as they wanted to the ventricular system but were able to successfully poke holes throughout the cyst wall and create an opening on the floor of the third ventricle to allow fluid to circulate easier throughout the brain. The surgeon did not believe that the surgery was going to be successful and advised us that he thought the cyst would look the same on the first post-op MRI. Instead, this is what Fred looked like post surgery....

Not only was the cyst considerably smaller, but his brain had expanded to fill in the extra space. In the words of our surgeon, it was "phenomenal"! The main issue now is that the fluid from the cyst has accumulated in the subdural space around Kyle's brain. We are hopeful that this fluid will be absorbed into his bloodstream and that he will not need another surgery to drain it!