1:30 p.m., January 23rd

This was the date and time G had his first seizure. He zoned out, went pale, his lips turned blue, his tongue quivered, and he stopped breathing. It lasted 45 seconds, and then was just out of it for about 5 minutes before he started crying and came to his sense . He was at school, and his amazing school immediately called me, although I was across town. We made the decision to call 911 and I met G at the local children’s hospital. His sweet teacher went with him in the ambulance since I couldn’t get to the school fast enough. I heard him before I saw him as he was wheeled to his room – he wasn’t happy about being strapped down!

I was so glad to see him and fortunately pictures of our dog finally calmed him down. We waited for an hour for the ER doc to see us, then another hour while they called a neurologist for a consult, and then sent us home.

We have always known seizures were a possibility for G….as the years went by, we became more and more hopeful he would miss them….We are so grateful that the school managed the situation so expediently, and I know they managed it much more calmly than I would have. The ER didn’t seem too concerned and sent us home fairly quickly with instructions to follow up with a neurology clinic within the next week.

We met with the onset clinic this week, and G had an EEG with “normal” results.  Usually with one seizure they wouldn’t jump to medication, however, because G has other underlying brain anomalies, they recommend we get him started on meds. If he is seizure free for 5 years (usually 2 years, but because of other brain issues, they say 5 for him!), then we can look at getting him off of them. Medicine 2x day for the next 5 years (or forever!) does not seem fun. He also prescribed an emergency medication which we give him if he has a seizure lasting 5 minutes or more.

A friend whose child struggled with seizures explained to me that it’s like a little part of their brain is fried each time it happens….one, two, a few seizures, not too big of a deal – but when they become frequent, it’s a bigger issue and we talk medication. We are most concerned with regression – G has worked so hard to get where he is, and it would be so hard to see him taking steps backwards. I know he is a fighter no matter what and will push through it, but we are really praying this is a rare occurrence and not a regular one. We are hopeful the medication we are starting with has minimal side effects (irritability being the most common one!), and that it works!

Thanks for your continued prayers, love, and support!  As you can see, he is still the happiest dude around 🙂

Playing at the playground with Nana!

 

The last 6 months…. (oops!)

(ha ha, I thought I posted this AGES ago….but nope, it’s been sitting here in “drafts”! My life!)

so, instead of apologizing for all the things I forgot to share over the past 6 months, I will just jump in with some highlights….(for those reading this in email, there are several videos…you have to go to the post to see them though!)

1) Walking….it started with G’s school Halloween parade, when he walked in his gait trainer turned into a walker (without chest supports) all by himself! It was the first time I had seen him so unsupported and was elated with his motivation to do it himself!

Then, not even a month later, he took steps just holding hands over the Thanksgiving break!

Such a great day! He turned a corner that very day, and now all he wants to do is walk. He was walking from the car to church today, and threw a fit when it was time to go into class because he just wanted to keep walking around…mind you, it was also 22 degrees outside (and it never gets that cold here!!)! He still needs support of some sort, but his progress provides so much hope, and we just know he will get there eventually.

All that to say, he will always have a wheelchair and will most likely not run a marathon or go on a hike, but, to have some independence to get around school and home is amazing.  We are very much looking forward to finally having pants without holes in them, and sparing our muscles from picking him up all day long – at 40 pounds it isn’t feasible much longer

2) Hippotherapy – Hippotherapy is a physical, occupational or speech therapy treatment strategy that utilizes equine movement. Hippotherapy literally means “treatment with the help of the horse” and the rhythmic, three-dimensional movement can improve the flexibility, posture, balance and mobility of the rider.

We have been on the wait list for months, and are thrilled to finally get a regular spot at Red Arena.  They are an amazing organization that does so much for the special needs community. G was only a few months old when someone told us about it, and we finally had some flexibility to get him out to the country to ride horses. G has always loved animals, so he loves to get there and look at the horses…it’s quite the challenge when it is time to go!

3) Speech – He is so vocal now! We don’t have much video of him talking, but he very clearly says mama, dada, “i see”, all done, “mmm” for more, puppy, poof (the dogs name), hi, no (of course), and then lots of babbling and sounds! We are working on Ps and Ms right now. He continues to amaze us with his receptive language as he shows us he understands what we are saying quite often.

4) Doctor updates – No news is good news 🙂 There are still some concerns about his weight (he is super skinny and tall), but his doc is going to give it another 6 months before being too concerned. We saw his developmental pediatrician and she is ready to talk about autism now – as his physical development has progressed so much since she last saw him, she can now see where his social skills haven’t. For example, he doesn’t react the same way typical children would in certain situations – he says the same phrases over and over, he gets very upset and inconsolable with certain actions (ie, a specific turn on our drive home from school), he continues to have behavioral issues that lead to melt downs we can’t control. She won’t diagnose him until he has full testing in another 6 months, but we are hopeful for the diagnosis as it opens up WAY MORE services covered by insurance.

G has a new push chair on the way, and a power chair! The silly insurance people denied the transit ties for his push wheelchair, essentially meaning he couldn’t get to school or out of the house (not that we have a wheelchair accessible van yet…), and they denied the canopy so our pale little white boy would fry when we leave the house in the daytime….so, that is the current battle we are fighting…it’s always something!

6) School district – it was a long fought battle, but we have given up for the time being (and maybe Daddy P can write another post on that whole thing!). Basically, we felt AISD was giving G next to nothing when it comes to OT and PT services, and we weren’t agreeable to what they were offering. Our next step is obtaining an attorney – we decided that due to all the issues we are having (and he is only 4!), we would rather keep him at the amazing Rise school for one more year (when he will have to leave), and avoid the AISD fight for another year. While I am disappointed with the school districts decision, I am glad that G will be able to continue learning with his second family at the Rise school!

Dressed up for the holiday ball!
Dressed up for the holiday ball!

Last week of school!

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G at the Thinkery (childrens museum) with a friend – he was a little wet!

We cannot believe how quickly the school year has flown by, as the last day of school is this Friday! Graham has had an amazing year – his vocalizations have exploded, he independently walks in his gait trainer around his classroom, school, and playground, and his “writing” (aka scribbling with a crayon) has progressed immensely! We are working on drawing circles, but he can fairly consistently draw lines across and up and down. He has his version of “no” down (“nah” with a head shake), can say some of his friends names, and can properly identify shapes and colors most of the time. He gets into tall knees without thinking twice (this was so hard for him just a few months ago), and in his quest to stand up by himself, is often found in a downward dog pose trying to figure out how to get his torso up. He consistently amazes us with his progress, but the end of the school year is always a great reminder of all that he has accomplished!

We did see his developmental pediatrician a few weeks ago, and she agreed his progress is great. Nothing earth shattering with that visit (thank goodness, last time she brought us to his craniosynostosis diagnosis!) and we will just continue to see her every 6 months, mostly to make sure he continues progressing.

In the meantime, G has been measured for a new gait trainer and a power chair. We are still confident he will walk someday, but even then, he won’t have the endurance to walk a full school day most likely and will need another mode of transportation. Also, we have met
our out of pocket maximum thanks to his surgery, so we do feel we should go ahead and get any equipment while we don’t have to pay for it 🙂 We will trial a power chair next week and hope he enjoys it more than   we tried it, about a year ago. He also needs a new stander (he is growing so fast!!!), however apparently our current insurance company won’t cover that and a gait trainer, so we had to make a choice. Obviously we want him walking more than just standing, so that was that.

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Playing in the rain!

In terms of therapy, our school district approved him to get speech therapy 2x week next school year!!! We are thrilled about that, and, he will be able to see the current Rise speech therapist, so it won’t have to be a new therapist, which is even better! He will continue speech, physical, and occupational over the summer, and take a break from much therapy as his therapist will be out of state. He is doing AMAZING things there,
including composing this masterpiece! I know I am biased, but I think it is AMAZING!!!

And lastly, one of G’s most recent tricks:

Lots of tears….

Tears of JOY!!!! We had our follow up with the neurosurgeon and craniofacial plastic surgeon today, and they finally gave us the results of G’s ICP monitoring….he does NOT have high pressure in his head, meaning we don’t have to crack his skull open!!!!

At this point we will follow up annually – they will be checking in with us on developmental milestones (we want to ensure he doesn’t plateau) and irritability, as those would be two warning signs of his brain running out of room. Otherwise, he will have MRI/CT scans every 2-3 years to check how things are growing, but at this time, no action needed!

We are so incredibly relieved! We were not expecting such good news either, so this was incredibly refreshing! I was crying from happiness when a nurse came in and saw me crying and was thoroughly confused…she said “I am sorry, I thought they told me to schedule you for next year, but there must have been some confusion…” assuming my tears were from fear and sadness! I had to explain I was just happy and she had the right info and patient 🙂

Speaking of development, G has mastered “mama” at 3 1/2 years old. I couldn’t be more thrilled. The only issue however, is that 90% of that time, he is screaming the word in frustration, sadness, or anger. It’s not a loving “I love you so much dear mama” but “mama why are you doing this to me mama?????”  I love it nonetheless!

Here is a video of G standing so tall and straight today (if you are seeing this in email, you must click to go to the webpage to see the video)

Thank you so much for all the thoughts, encouragement, and prayers. We are truly blessed by the community of friends and family surrounding us, and so thankful for all the love and support!

 

Easter!

Just a quick post – I love both these pics captured by a neighbor – we had an Easter egg hunt at our house, and G stood up for a group picture (and so straight!), AND he captured G with his newest accomplishment – crawling on all fours, up on his hands! Usually, he is on his forearms, but every now and then he will get up on his hands, which is what we want!

G easter egg hunt 2016_2

G easter egg hunt 2016

He wasn’t so interested in the eggs, but had fun crawling all over the yard and having all the kids around. You also can see him donning his (not so) fashionable Carhartt overalls, the only thing we have found that doesn’t rip with all his crawling. All of his jeans have holes in them, so at this point, anytime he goes outside we put these on him and it saves a bit on our clothing budget 😉

Hope everyone had a super Easter!

 

Home Sweet Home

We are happy to report G is home from the hospital and normal life can resume! We were blessed to have family in town helping us manage the day to day and G loved having a little extra attention!

We were blessed with prayers from across the country and we saw God’s hand throu2016-03-22 12.36.38ghout. Firstly, the poor guy wasn’t scheduled for surgery until 1. Anyone who knows G knows he LOVES to eat, and the fact his last meal would be dinner the night before, we were preparing for a nuclear meltdown. However, G was happy as could be all day, and not eating didn’t seem to phase him. One of our dearest friends from church works at the children’s hospital, and she was with us as G got prepped, and in addition to adding her knowledge through the process, she provided a great distraction for mama’s nerves 🙂 The nurse came to take G back and he was as happy as could be and glad to go with her, another shocking occurrence!  (poor guy didn’t know what was coming!) G’s procedure entailed drilling a hole in his skull about the size of a pencil tip, inserting a wire, and securing it to his head. The wire is then connected to an Intercranial Pressure (ICP) monitor which he is hooked up to for the duration of the stay. We were told it would be a 30 minute procedure, and after 45 minutes, mama C was about to lose it. They finally called us back after an hour, at which time we spoke with the neurosurgeon and he confirmed everything went well. We then went back to see G coming out o2016-03-23 07.46.17f anesthesia. Oh boy, he was sure grumpy. Similar to last time, he had a hard time breathing and the nurse became concerned when his lips were turning blue. They hooked him up to oxygen, which he hated, but helped. We gave him two doses of morphine to calm him down so he could breathe, and that finally helped and he fell asleep and got his lungs going again. This was a huge relief to get through the anesthesia and know he was okay.

We then went up to his room and were thankful for a great view of a park and trees – it’s the small things 🙂 Knowing G must be hungry and getting the okay, we got 2016-03-22 16.03.28him through a bottle of milk, apple sauce, and some veggie sticks before it all came back up again :/ Not fun in a hospital bed! After some anti-nausea medicine the next day,  he was back at it.

Our time was spent mostly in bed hooked up to the ICP monitor, but spent a bit of time taking a walk and in the playroom. G loved roaming the playroom, where we followed him with the ICP monitor and had to record the numbers at any point it was over 25 for 5 minutes (which never happened). Most anytime I looked at it (the docs advise us not to pay attention to it other than when we are out and about!), it ranged from 1-20. G appreciated having lots of tv since we don’t watch too much at home, and his choice of iPad games without competition from Sister C!  We learned it is darn near impossible to sleep in that place! Someone was coming in pretty much every hour, and prodding him every 2.  I don’t know how sick kids can ever get well with no sleep!  Daddy P and I took turns sleeping at home so we could feel like real people at least for a day 🙂2016-03-22 19.19.19

This morning the monitor stopped working all of a sudden! I honestly thing G dislodged it in his brain due to all his tossing and turning, as they couldn’t find anything wrong with the machine. G was pretty sick of being there (especially in that bed), and kept signing and saying “all done, all done”. I am fairly certain he took matters into his own hands to get out of there! It was pretty hilarious. They were planning on letting us go today anyway, so not much harm done I suppose!

Yesterday we were told the numbers looked great and we would likely not need to come back to the craniofacial clinic ever again. That sounded pretty darn awesome. Unfortunately, we learned that last night his pressure spiked 8 times, and we now need to meet with the whole team again to determine next steps :/ We are pretty bummed about the outcome at this point, but look forward to learning more from the experts in a few weeks. We trust God’s hand in all of this and are so incredibly thankful for all of the thoughts and prayers we have received over the past few days!

 

Absolute Magic!

MK_MSATHCLB_7617431717EPCOT_BACKSIDE3_7618372629

Last week, our family took a break from the recent drama and headed to Disneyworld! None of us had been before, and it exceeded our expectations in every way! Daddy P and I aren’t keen on crowds and dreaded the whole experience, but wanted to get it done before Sister C hit kindergarten and confined us to traveling at peak times! We surprised them at breakfast the day we left, which was a pretty great start to the day!

Here is a short video with some highlights of the trip, thanks to Google.

From the minute we arrived, we were blown away by the exceptional kindness we experienced with every turn. This trip was the first experience taking G’s wheelchair stroller on a bus, and passengers and staff both made us feel comfortable with the process.(It also meant we were first on the bus which was nice!) So many times we met strangers while in line that were so kind and welcoming – a woman I will probably never forget blatantly asked what was wrong with G (which always takes us a bit aback!) and then followed to say her family fostered a boy with cerebral palsy for 10 years and she just has a huge heart for kids with special needs…and apologized for her upfrontness but she loves meeting kids like ours. We rode the train with a dad visiting Magic Kingdom with his 20 something son with Downs Syndrome and they were just so incredibly nice and inspiring.

EPCOT_WRLDSHOW_7618129913Every character we met (Elsa, Anna, Jasmine, Cinderella, Snow White,Tinkerbell, Aurora, Donald Duck, Mickey Mouse, Doc McStuffins, Jake, Sofia, Daisy Duck, Minnie Mouse, Goofy, Pluto…and I probably missed a few!) talked to G without hesitation, even though he was often turned the other way (shy!) and generally not responding. He DID give Elsa a huge smile, and kept trying to give Anna a Mickey sticker which was pretty cute. He was SO excited to see Doc McStuffins, but the minute she would come by he would turn away…it was really cute how excited he was to meet everyone, I only wish they saw it too!

There were so many times Mama C cried watching the pure joy from the two kiddos, but some of the highlights were…

1) realizing we would never wait in a line and would always be front row for shows2016-02-28 17.34.53

2) In a Frozen sing along, Elsa waved directly at Graham from the stage, out of a crowd of hundreds!

3) Watching just HOW incredibly excited G was watching PhilharMagic, one of the shows in Magic Kingdom

4) MK_PFTHBLUEA1CHAR_7617526022 Elsa giving G a kiss in our meet and greet, and carrying on a “conversation” with him2016-02-28 21.13.02

5) Sleeping Beauty inviting G and C to watch the fireworks with her across the room at Cinderella’s castle (where we were dining, naturally). I explained that was sweet, but G can’t walk, and she said no problem, I would love to carry him. I was so touched but also know his floppiness can be hard to handle, so I went over with them. Big Sis sat in Aurora’s lap  and G sat next to her watching the fireworks. It was an incredible experience.

6) G was invited to be in a the finale of the Lion King show at Animal Kingdom. I told them again that he can’t walk, but thank you, and they said, no, we will push him in his stroller if that’s okay. So off he went with an elephant (?) and Big Sis to dance around in the ending parade.

7) How sweet Doc McStuffins was to keep coming back and trying to love on G even though he was so shy every time. This video is of Sofia, so take this reaction and double it for Doc!

STUDIO_HBKEYSTO_7619157426The trip was so touching, we were amazed.  Needless to say, I think Daddy P and Mama C might be suckered into going again sometime. Not for 6 days and not every park (!), but it was a fabulous time for everyone.

Now that the fun is over, G’s ICP (intercranial pressue) monitoring is scheduled for March 22. Today we discussed the surgery (drilling a hole in his skull, inserting a wire, and to keep it “secure”, pushing it out through his skin in the back of his head) and 3-4 day inpatient stay. We check in on Tuesday and will check out Thursday or Friday depending on how things are going. Apparently then we wait 2 weeks to have a follow up with the surgery team to discuss the results. So much waiting, so much trusting, so much loving on that little man. He is one tough dude, and God knows he is making all of us stronger too!!

Well, at least now we know why hats never fit! ;)

This morning was our follow-up with Dell’s craniofacial clinic (read more about how we got here). We arrived and did the usual things (weight, measure his head, fill out the same paperwork we filled out 3 weeks ago, try to get him to lay still to get his height, take pictures of his head) and then waited patiently (or not!) for the team to arrive. I was humored that Daddy P got to experience the “fun” of G at a doctor’s office – as he described it “he hunkers down in a shell and just screams”….yup, that’s about it. 😉

The nurse came in to prepare us that there were 6 physicians, an intern, and a nurse who would all walk into the room shortly, and it doesn’t mean anything, it’s just the way the clinic works. Mind you, we are in a usual small exam room, so, when all these people did storm the room, we felt much better having the heads up. There was the neurosurgeon, the craniofacial plastic surgeon, pediatrician, geneticist, and other doctors whose roles I don’t even know (I counted 9 people in the room, 12 including our family)!  The neurosurgeon (Dr. George) and plastic surgeon (Dr. Kelley) led the conversation, which unfortunately began with, “so…has a doctor ever been through MRI results with you? What do you know about your son’s condition?”  Yes, we had been through MRI results before, but now we are on the defense that you are going to lay something BIG on us that we don’t know yet?!?  We talked about his Agenesis of the Corpus Collosum (ACC) and the neurosurgeon reflected where the Corpus Collosum is and how we can see it is missing, and in addition, there are usually 4 or 5 other connectors that pass info between the right and left spheres (in addition to the CC), and those were all missing as well. That wasn’t something we necessarily knew, but he reflected it is consistent with ACC, so not shocking. He started talking about white and gray matter and Daddy P immediately assumed we were being told G has a brain tumor, because that is where Daddy P’s anxiety always takes him….however, he was just confirming that things look like they should. 🙂 Then he showed us how the bumps of the brain are reflected around the perimeter of the MRI, but look at this, the bumps are RIGHT up against the skull. At that point we were then shown where there IS room (blanks space in the MRI!) in the front and back of the skull for his brain to grow into, but the sides were at max capacity and the brain is right against the skull.

He then pulled up the CT scan which is where we see the skull, and points out the sutures, which is where the skull expands to allow for brain growth. We see all of them except one, the sagittal suture. Yup, there it is, confirmation of the issue. Erg. Because his head has always been shaped this way, it was probably closed even at birth, even though it shouldn’t close until early adulthood.

Additionally, there are spots where they can see the bone is thinner on the sides – where the brain is pushing up against it, another indication of being out of room. As an aside, at this point, I actually came to the conclusion on my own of what the thinner bone meant which led to a conversation that I might as well be the neurosurgeon, they were getting me some cards printed up, Dr. George passed me his phone to take over, and it added some much needed humor in an anxiety filled, people packed room. 🙂

At this point, both doctors expressed that because of the severity of the surgery, they don’t recommend jumping to this, and would prefer to monitor the pressure in G’s brain to determine if surgery is needed. This will involve drilling a hole (the size of the tip of a pen) into his skull and placing a very thin wire into his skull, touching his brain. The wire is connected to a machine and will allow the team to monitor his brain pressure. For a variety of reasons there could be false results, so they monitor G for 2 nights and 2 days in the hospital. With this info, we will then know if the pressure is high we need to do surgery sooner rather than later, but if it is not,we discuss – maybe we monitor again in a period of time, maybe we do nothing.  If surgery is necessary, there are a variety of ways they can expand his skull – usually this surgery is done in infants, so when they expand the skull, it tells the skull to create more bone and all is well. After 1.5 years of age however, the skull won’t create bone quickly enough so this becomes an issue. They had previously discussed taking bone out of his leg to fill the gap, but today he mentioned there is a way to add an expander that they can tinker with periodically so it expands the skull very slowly, at a pace the skull can keep up with to create new bone.

And with that, our world is a bit flipped upside down…we have always know there would be challenges with G, but they were development related, and we have always been relieved he isn’t “sick” and in the hospital, and all of that….well, now we know things can change so quickly. I still can’t understand why no doctor ever mentioned this before, and am a bit frustrated we didn’t catch this when he was an infant. I have to rely on God’s timing, and this is how it was supposed to work out. 🙂 The only time I cried was discussing anesthesia required for the pressure monitor to be placed, but Dr. George did understand my concerns and explain there are multiple ways to put him under and we would find the best way.

G’s ACC also makes him prone to seizures – we have been so very blessed that this hasn’t happened yet, and I asked Dr. George how touching his brain with this wire could affect this. He was very honest – the stress of the procedure, the wire, who knows, could induce seizures, but he can’t say in any way that it will or won’t. That is a bit hard to hear, but we are glad for his honesty.

So with that, we work on scheduling a 2-3 day hospital stay – fun! We are heading out of town next week and will deal with it upon our return. We are glad there isn’t immense urgency and are so very thankful for those around the world praying, thinking, and loving us! Thank you from the bottom of our hearts, we are more grateful than you can ever know!

And to confirm, we have never found a hat that fits G’s head…that darn sagittal suture has been wreaking havoc on G’s wardrobe for 3 years, at least now we know what’s responsible! 😉

In our hearts!

G had his MRI and CT scan last Wednesday. We were grateful for so many friends and family across the country praying for the procedures, for God to allow G just a few minutes of peace through the tests so that G wouldn’t need to be sedated just for the pictures. While G did not exhibit a shred of peace ;), God provided us with the most amazing technicians who worked with G screaming bloody murder nonstop for 45 minutes. It’s a helpless feeling to not be able to explain to him what is happening or why, and to know you can’t bribe him with ice cream or a cookie like many typical children! While he screamed, the techs were so great with him, explaining what was happening, talking about driving a race car or a rocketship and trying to connect on any level. If you have ever had an MRI, it makes a terribly loud noise, and one tech got in the machine with him (a very tight fit!) and sang the ABCs to him to try to help him relax. I was in the room for all the procedures as well, but I am not sure G had any idea since all he could do was scream.

The CT technician wasn’t sure her pics worked, but didn’t want to radiate him again (thankful someone was thinking that one through!), and the MRI tech thought hers probably came out okay. We left unsure what would happen next, and thankfully the doctor called and said while she could tell he was moving, they would be usable for the next steps.

So, next Thursday, Feb 18, we will meet with a team of craniofacial plastic surgeons and a neurosurgeon to discuss options. We will then find out the results of the MRI and CT, and if there is room for G’s brain to grow in his skull as is, or if we need to proceed with surgery to expand it.

In the meantime, G’s teacher showed me one of his new tricks, and it melted my heart beyond belief – she asked him where he keeps mommy, and he got a big smile and pointed to his heart! I guess that’s something they do daily in class to remember their families or absent friends, and it has sunk in for G. We love when he participates and reflects understanding in things he hears. Daddy P took this video – it’s not the best because Daddy P had just taken away a toy G wants, but you get the idea 🙂

You can also see in this video his new Paw Patrol blanket – I found out his obsession with Paw Patrol as we walked by a t-shirt at Walmart and he went crazy. Since it is so rare that he gets excited about something, you can see we are now stocking up just to see his joy – he won’t go anywhere without that blanket!

 

CraniosyntoWHAT?

Today was the visit with the craniofacial clinic at Dell Children’s Hospital here in Austin. It didn’t go nearly as well as we had hoped….we were banking on “no big deal” knowing G’s head has always been a funny shape and lack of “symptoms” of brain issues.

As it turns out, there very well might be big concerns. Not being a doctor, I can’t explain it all in nearly as much detail, however in my layman’s terms: There is a suture in the back of the skull that fuses in adulthood – it stays open to allow for the brain to grow throughout childhood. 85% of the brain is formed by the age of 3, but there is a remaining 15% growth between 3 and adulthood (they don’t actually know at what age it typically fuses as it ranges all over the place). The doctor did an assessment of his skull and reviewed his prior MRI from 2013. She definitely has concerns that he has craniosyntosis, a birth defect in which one or more of the joints between the bones of a baby’s skull close prematurely, before the brain is fully formed. With craniosynostosis, his brain can’t grow in its natural shape and the head is misshapen. With the hundreds of doctor’s appointments over the past 3 years, I can’t believe this has never been mentioned – his head has always been huge, but no doctor ever seemed to have serious concerns.

As it stands now, the next step is for a CT scan of the skull to better see the sutures, and an MRI to see the brain and assess how much room is present for his brain to grow. If the results are of no significance, they will follow him. Otherwise, pending the level of significance, there are two courses of action:

1) a device of some sort is placed in his skull for a 3 day stay at the hospital which measures the pressure in this skull. This will provide more evidence of needing further action, or not.

2) surgery. A plastic surgeon, in conjunction with a neurosurgeon, open his skull and create new sutures to allow for expansion. Because G is already 3, this will most likely require taking bone from a rib or leg to create more “skull” and allow for growth over his lifetime. The goal is to have this surgery only one time and not have to open his skull again. This should allow for his head to be reshaped to be more “normal” and allow for plenty of future growth.

This obviously sounds overwhelmingly scary. The doctor did make a point to note this is not brain surgery, it’s skull surgery. It is awfully close to the brain, but it does sound an itty bitty better. 😉 Another bright side is that G has never plateaued in his therapy, he continues to make progress. If he had stalled out at some point, that might point to his brain being restricted and unable to develop new skills. We are hopeful that even if he is running out of room, he isn’t out of room just yet.

Without getting too wrapped up in the “what-ifs”, my immediate concern is the MRI/CT scan. Apparently it’s some super fast MRI that only requires a minute, so we are praying that will work and we can get good results from a local imaging center. His last MRI he had significant issues coming out of anesthesia, and I want to do everything to avoid that, as well as the whole hospital ordeal. We wait a week or so and then hopefully that will be scheduled. We have a follow up February 18th with the surgery team to determine next steps. Prayers are welcome 🙂