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?!)