The last time I posted on here Owen had just turned two, we had just moved and we were a month away from John's radiosurgery. And we only had one child. . . Boy can a lot change in two years! So lets just start at the beginning.
John's surgery went well but for the last two years he's still been having recurring seizures and though he's medicated we can't seem to shake them. Because of this he hasn't been able to work since late 2011. In November of 11 I started working as a cashier at Target and have been there ever since.
I can't say much to our surprise, because it shouldn't have been, we discovered early in 2012 that we were pregnant again. I hadn't expected it but we were thrilled if not a little worried given our last pregnancy was full of drama. But this one was completely smooth, moody but smooth. Clayton Joseph stayed in as long as he wanted and made his appearance one day before he was due in the most incredible and empowering experience of my entire life. He was born September 4th at 7lb 6oz, 21 1/2 inches long in a quick natural birth. I loved everything about it and was so grateful for the chance to be able to have a birth go exactly how I wanted it.
At first Owen was terrified of his little brother but he's warmed up to him and I think now he's kind of over him. Eventually they'll be best friends ;)
A week or so before CJ was born our big boy started preschool! He spent the last year going to school 4 days a week for about 3 hours a day and he loved it! He's got 3 amazing teachers and a speech therapist who love him almost as much as we do! We've seen a lot of growth in our boy in this last year verbally and cognitively but there's still a long way to go.
Owen still has some definite delays when it comes to understanding, processing and verbalizing directions, feelings, and just communicating in general. Some days I want to pull my hair out because I feel like he doesn't get that he needs to tell me what is wrong and then I realize he doesn't know or just can't tell me. Let me just say, 3 has been extremely challenging. He's in a stage where he's asserting his independence in a variety of ways and training and discipline are daunting tasks that some days drive John and I crazy. Let me tell you, it's infinitely more challenging with a second child.
Having said that, Owen is one of the happiest and funniest kids I've ever known. He gets so excited about the littlest things and will start laughing at just about anything. And I tell you, his laughter is just infectious!
Some other notable changes over the last couple years:
*Grandma moved closer!!! My mom moved up from Louisiana about a week after CJ was born. She's been an amazing help and Owen is so excited to be able to see her all the time! In about a month we'll be helping her move into her newly built house about 20 minutes from where we live.
*Just after this past Christmas we lost one of the most amazing women I've ever had the privilege to know. Grandma Karaffa passed away at the incredible age of 94. She lived her life full of love and family and plenty of laughter and we miss her everyday.
*We just finished up with a visit from my brother Matt, his wife Sam and their boys Andrew & Lucas who is about 8 weeks younger than CJ. They made a quick stop before being shipped out this morning to spend a few years in Japan with the Air Force. I'm proud of my brother and we're definitely going to miss them but in the long run, Japan is a great opportunity for them and will open up plenty of doors in the future.
I'd love to make promises that I'll update more often but well, if you're a parent you know life doesn't always work like that. So...until next time ;)
Thursday, June 13, 2013
Friday, August 12, 2011
We are EXHAUSTED!!
Last night after John got home work we packed up and headed to Toledo for the night to get 2 appointments taken care of today. We got in late, got VERY little sleep and got up super early. Let's just say, never again. This momma CAN'T do 2 1/2 hours of sleep - I swear I feel sick. Owen, in spite of the lack of sleep (he got maybe 4 hours as he didn't sleep at all in the car and was slap happy when we arrived and tried to put him to bed), his shot and sparse and sporadic naptime was the best little boy EVER at lunch with Dad, Camille, Grandma Gloria, Grandpa Joe and a passing through Grandma Karaffa & Connie (such a treat!!). After lunch came a much needed but not long enough nap for the whole family before a visit to see Mimi who was home recuperating from a racketball game gone bad ;) Give her a break next time, Pa! Although it was a super short visit, we sure managed to pack in a ton, even a visit to Mel & Gary who were amazing enough to let Owen borrow Amren's crib for a nap while we went to John's appt.
Good stuff first: Owen is broaching the 50th percentile for height & weight!! He is now 26 1/2lbs and 34 1/2 inches tall. As always, he's around 75th for head circumference - that'll probably never change. In other news there's still concern about his speech and understanding development, no surprise there, so they gave us a script for a hearing test (NOT worried at all) and we'll continue with speech therapy from Help Me Grow. He took his shot like a champ and was a great boy even though he was wrecked. Now John and I get to find a pediatrician down here and we'll be good.
Now onto the big stuff.
After John's angiogram last month I rescheduled both Owen's 2yr check up and John's follow up with the neurosurgeon to the same day so we didn't have to make an extra trip. He was originally supposed to have his follow up on the August 1st, so I've been sitting on one aspect of this blog for about 2 1/2 weeks because of the nature and needing more information. Now that we have as much information as we'll have for now, I can share with you just what has been going on over the last 9 months.
First of all let me say that his original angiogram was 1) not the correct test they were supposed to run and 2) incorrect in the diagnosis of an aneurysm on his carotid artery. So that's not an issue.
That being said, his cerebral angiogram did find an AVM (arterioventricular malformation). An AVM is the technical way to say that he has a tangle of blood vessels in his brain. The AVM is considered small and has been there since before he was born. There are no known causes of AVMs - in John's case it isn't a result of any head trauma, or anything of that sort...it's just always been there. This IS what caused his hemorrhage in November which in turn resulted in the seizures.
His neurosurgeon explained today that AVMs have an average bleed rate of once every seven years. So we aren't expecting him to have another bleed tomorrow or even next month, not to say that he's out of danger but for now that isn't a concern.
There are two main treatments for AVMs, open brain surgery to remove the central portion of the AVM and radiosurgery which uses highly focused radiation to expand the walls of the blood vessels and in essence close off the blood flow. Obviously, we're hoping he's able to have radiosurgery, but it all depends on where exactly the AVM is located, how deep and what areas of the brain it is/could be affecting.
Right now we are being referred to the Cleveland Clinic as neither of these procedures are done in Toledo. This is a plus as Camille is very familiar with the neurosurgery department there and graciously offered to accompany us when we have to go, which is a great load off my shoulders. (I so love my family!)
I have to say, while the prospect of brain surgery and radiation are much less than pleasant, we have a diagnosis. We know what caused all of this and we have a plan of attack - how many people suffer and never find out why? Praise God that we can put a name to everything that's been going on over the last year and not have to worry about random seizures and the unknown.
For now, that's all I've got for ya. We should hear in the next week or 2 when our first appt at the Cleveland Clinic will be, at which time we'll find out which treatment method is going to be used and we'll keep you posted.
Before I go, yes, the last year has been immensely challenging and full of uncertainty for both John and I but I hold this as a good sign, the first step in finally putting the huge heap of junk behind us.
As always, thank you all for your prayers and for your concern for our little family.
Wednesday, August 3, 2011
Where in the world did the time go?!?
Being that I posted not too long ago, I don't really have too much to share. We had a small but wonderful party for the little man last weekend and half of his grandparents were able to be here, which was wonderful! He did miss his Grandma Kathy & Grandpa Jim and Pippi & Mimi, but it was a great day in spite of their absence.
We now officially get to tell the world that he's two...I gave up on the 5 minute adjusted age explanation months ago!! It just gets so tedious feeling like I have to explain why my son isn't quite as big and developed as the other 2 year olds out there.
Which brings me to a wonderful new development, my child is slowly learning his letters and numbers! Personally, I think that's AMAZING for being technically 21 months old and not even able to talk much at all.
Every morning when he gets up we count down the stairs, 1-14. As of now the only numbers he really gets are 2, 3, 5, 6, and 8 - but I'll take it! This past weekend for his birthday John and I got him an alphabet puzzle that said it was for ages 5+...yeah right! Currently E and O are the ones he gets, which are in his name and frequently heard. But he spent about 20 minutes at the party taking the letters out of the puzzle and putting them back in their right spot.
You know how you wonder if all the little things you do with your children are actually planting seeds...and then out of nowhere they just shock the heck out of you and you get your ah-ha! moment and it all just seems to make sense. That's how it has been in our house for the last month or so, just one thing after the next.
As I type this, my future musician son is playing with a keyboard that Aunt Michelle & Uncle Tony got him for his birthday, and I'm amazed at how he's able to hum in tune with some of the notes - he definitely loves music... (I wonder where that came from!) In fact the other night when I was singing to him before bed I could swear he was trying to sing with me!
I can't believe how big he's getting, it's just unreal! It boggles my mind to think that in 3 years we'll be enrolling him in kindergarten!
Well, Friday starts our first Help Me Grow visit with Montgomery County's Early Intervention. It's exciting, but sad - I'm really missing Heather, Diane and Lindsey and all our Lucas County girls. And then next week Owen has a speech evaluation down here and then his last appointment at Dr. Mills' office up in Toledo. John also has a follow up with his neurosurgeon the same day, detail on all that to follow when we actually have some information.
Lots going on in the month of August with the whole family! I will most definitely update more often!!
Wednesday, July 13, 2011
It's hard for me to sit here and try to take a breath as I try to share a little of what has transpired in our lives over the last seven months. It's been like a whirlwind - at times it's been fun and exciting but for the most part, tumultuous and stressful.
Let's start in the John department. We still don't have the events of November 18th behind us as the doctors still have no idea how or why or what caused the original hemorrhage. July 26th he has a cerebral angiogram scheduled in Toledo to possibly shed some light. In June he was 6 months seizure free and finally able to drive, a huge blessing as we scheduled our move for later that month.
Yes. We've moved! June 25th we officially moved from Toledo to Kettering. John had been down here off and on for a month or so finding and working a job to help get us established a little better. It hasn't been an easy 3 weeks, attempting to move into our new place and make trips back to Toledo when necessary.
This past weekend we traveled back for a family weekend with my in-laws and ended our long weekend with the funeral of John's Uncle Chris - one of the bravest and most faithful men I've ever witnessed who passed away after an unbelievable fight against throat cancer.
Now we are home, for at least another week and a half and our attention is turned toward planning a birthday party for my fast growing boy.
It's hard for me to think that the last time I posted on this blog Owen was just starting to walk. Now he's running all over the place in his cute wobbly way. He's climbing everywhere (sometimes including the stairs), getting into everything just because he can and thoroughly enjoying his new bedroom and all the space to run around.
We said goodbye to our Help Me Grow friends last month before the move, it was a sad day. They are all so impressed with Owen and love him and his infectious laugh. Toward the last couple visits they were bringing out a Speech Therapist to sort of evaluate him and work with him as currently my son only has probably a 4-8 word vocabulary.
There are definitely some speech delays going on, but aside from being frustrated over the lack of communication going on in our house, we aren't too worried about it just yet. I'm expecting in the next couple weeks he'll have an evaluation and we'll go from there.
I still can't believe it's been two years. Strangely, seems like forever ago and yesterday all at the same time.
As I currently joined Google + and it's relatively linked to blogspot, I may be on here more often with pictures and updates. But before I go I'll send you: mrsdrouillard's Channel where you can always see up to date videos shot on our cell phones.
And a few pictures:
Tuesday, December 7, 2010
John was released from Flower yesterday. He's doing better, stable. There's still a lot to work on, plenty of appointments to make and attend. But he's happy to be home, and very happy to finally be able to see and spend time with Owen.
I personally would like to thank the amazing people who helped out with Owen this past weekend and who have volunteered to help out as I start my first day of work today. It's a relief knowing that so many awesome people have offered their time and talent, in a couple cases to people they barely know. It helps me to have this support system. Thank you, all - more than you know.
Thursday, December 2, 2010
This post will be immeasurably cryptic because of the nature of the situation.
John has been afraid, terribly afraid that he'll have another seizure. His sleeping habits have been erratic and abnormal. John is also a regularly medicated man with bipolar disorder. He has not gone off his meds, they have been regimented.
Last night, after much emotional warring back and forth and John's step-mother picking up Owen we had no choice but to check John into Flower Hospital's psych unit.
Please don't ask questions - right now I have no answers. This isn't a medical condition with an expected release date, this is something John has to work through with the doctors in the hospital because I'm not qualified to handle it - and I don't want to.
I'm only posting this for your prayers. For John, but also for me as this new development has me creeping closer to my breaking point.
I will state, this has nothing to do with John's brain hemorrhage and also this isn't a new diagnosis - just new symptoms. John has always been bipolar, I knew what I was getting into and I love my husband very much. And I have to be honest, with all he's been through in the last 3 weeks, I did sort of see this coming.
On a side note, I will be searching everywhere for someone able to watch Owen in the evenings here very soon, starting next Tuesday. I will be working, and I would prefer someone who could watch him at our house, but right now I'm flexible.
I finally feel like I can sleep so I'm off to bed - thank you for your prayers and support.