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.