Monday, March 30, 2009
That is what we are thinking these days...Greyson is so little, yet getting so big at the same time! This past week was a VERY busy one for our little guy. He had OT, an ultrasound on his hips, an appointment with his urologist, and we went to visit the conductive learning center. His appointment with the urologist went very well. His kidneys and bladder haven't changed since the last ultrasound that he had done while in the nicu. This mean, that for now, we don't need to think about cathing...YAY!!! The meeting that we had with the conductive learning center went great as well! This center helps kids who are dealing specifically with spina bifida or cerebal palsy and happens to be 5 minutes away from our house. The program has helped a lot of children both physically and cognitively and Andy and I feel encouraged that it will do the same for Greyson! We start our weekly sessions there this Thurs. This week is another busy week in the Gibbs' house. Greyson has appointments with the neurologist, orthopedist, OT, and PT at the CLC. I also have an appointment, so between the two of us we are staying very busy!
Greyson has started smiling more and more! I think that I've gotten at least 5 out of him today! He is also getting a bit more vocal. :) He makes sure that I know weather he is (or isn't) enjoying something! :) He has been sleeping great at night (about 7 hours) and during the day he likes to take short cat naps (not my favorite, but I'll live) He's been eating about 5-6 ounces at a time and the proof is in his chubby little cheeks! Andy and I feel like the luckiest parents in the world!!!
I hope that this finds you all happy and healthy.
love, leigh, andy, and greyson
Tuesday, March 24, 2009
Today grey's OT came to the house and she worked him hard. Hard enough for him to zonk out mid-way thru his "exercises". She showed Leigh some techniques to keep his legs limber and so we will continue to do these throughout the week. His legs are definitely getting chunkier, and it appears to LEigh and I that his right leg and foot is moving a little more. It's quite remarkable the joy and hope we receive by the simple bending of a knee, or the movement of a toe. In fact, as I write this Leigh just belted out "yeeeaahhhhh" Grey was moving his legs!!!
Speaking of moving legs...I've starting running again. It's about this time of year, usually while at a sports bar partaking in the viewing of a march madness game that i begin to think about training for the River bank run here in Grand Rapids. So this year was no different as I hit the pavement and began to train. However, what has been completely different for me is my motivation. Perhaps you know where I'm going with this... Yup, Greyson has already been such an inspiration in every part of my life, so it's not a big surprise that he's inspiring me to stick with my running. Funny how much we take these things (legs) for granted. We just go about our day walking, running, and occasionally skipping :) never thinking about how different our lives would be if we didn't have the complete use of our legs. So as one might imagine, I do think about how Grey's life will be and just how well he'll be able to get around and if he'll be able to walk someday.
So I run, (sometimes I walk, I'm not in really good shape yet) and on every single run I thank God for everything I have. Because, truthfully I am blessed, even though it didn't seem like that not too long ago. But I am. If you could measure the amount of love I have for LEigh and Grey and somehow store it and use it as an alternative fuel to run the next generation of SMART cars...We'll lets just say everyone would have a full tank of gas :) hehehehe So where was i going with this...oh yeah, I run. and when my legs hurt after running, I don't complain. And I don't think I will ever again.
love you all,
Andy, Leigh, Grey
Friday, March 20, 2009
It's been a few days since our last post and we figured that you may be wondering what was going on with our little guy. This week Greyson started with his weekly appointment of occupational therapy. He started off strong, impressing the therapist with his great eye contact and ability to track objects. However, midway through the session he got all tuckered out and fell asleep! Not to worry though, we will have these appointments every week! Greyson also had an appointment with his orthopedic doctor. His feet (especially the left) kind of curls inward. His physical therapist noticed this last week and wanted us to have it checked out. Well, the doctor agreed that there was a bit of a curve to the feet but nothing to worry about now. He wants to see him again in 6 months to check again. He also noticed that his hips were a little tight. Often times with spina bifida hips can be out of socket so he wants an ultrasound to see if that is the case with Greyson. He did say that as long as the hips are mobile (which Greyson's are) that physical therapy is the way to go. He doesn't like to do surgery for this and says that it shouldn't hinder him from walking one day if he is able. All in all, it was a good appointment.
It has been confirmed this week (written in the baby book) that he gave me a smile! It was the most amazing thing that I have ever seen! Pretty much all we do is sit around and try to bring out that smile! He continues to amaze us and really is so happy and alert. He has become a spitter, it doesn't bother him at all but I'm pretty sure that my laundry load has tripled!!!
This coming week is a busy one for Greyson. We have four appointments. We will see his OT, have his hip ultrasound, see the urologist, and meet with The Conductive Learning Center at Aquinas College. They specialize in helping kids with spina bifida and cerebral palsy. We are going next week to check it out and to see if they will be any help to Greyson.
So here I sit on a Friday night just watching Andy and Greyson "play" on the floor, and I realize that no matter how busy life gets with doctor and therapy appointments, I couldn't be luckier! Enjoy your weekend, as I'm sure we will be enjoying ours!! :)
Leigh (Andy and Grey)
Monday, March 16, 2009
So it's pretty obvious I have a favorite subject when it comes to photography. But just to let you know, not all the photos turn out as planned. And actually those have become some of my favorites. So here are a few fun "outakes" of our favorite little boy. We can't even imagine life without this little guy!
love to all,
Saturday, March 14, 2009
wasn't scary at all.
In fact, it was a very pleasant day filled with plenty of good things! The best of those good things was the fact that Greyson's follow up, post-op appointment with the neurosurgeon went great! Everything looked good and the shunt is working properly and set to the correct setting. He'll have to go back in three weeks for a similar follow-up. This news sure made the other good things even better! and that other good thing happened to be my birthday!!! What, a birthday on friday the 13th, sounds like it's destined to be doomed! Quite the opposite. In fact it was a great birthday and I got to spend it with my little buddy which was by far my best gift. Although my new running shoes fit really well and look striking on me :)
Oh one tidbit about my Friday the 13th Birthday...
As I have in the past I like to make unusual request for a birthday treat at the office, this year was no different. After realizing my big day would indeed fall on a friday, i immediately thought, " I want A Friday the 13th horror flick themed cake with blood red frosting" So in my explanation I must have got my horror film movie stars mixed up and said i wanted freddy kruger on the cake...opps what i meant to say was Jason. yeah know, Jason the guy with the hockey mask. WEll anyway it was too late and the cake was made and sure enough I celebrated with a Friday the 13th Freddy Kruger cake. The mix-up made it even better than I imagined!
Ok enough about me... Leigh and I took grey out for a walk in his stroller today, and although it looked like it was 60 degrees and sunny, it was much, much colder than we expected. But Grey was bundled up in his Caribou/Elk/Reindeer/Moose jumpsuit that looks very warm. I wish i had one. So the walk was great, just cut a little bit shorter than we thought. Spring where are you? Come soon please!!
coming soon... some "outake" photos of Grey :)
love to you all
Wednesday, March 11, 2009
Holy cow, our little Grey is already one month old!! I guess time really does fly!
This week we have had a few appointments. On Tuesday, we met with the plastic surgeon who helped with his back closure surgery. He was so pleased with how his back is healing, that we won't need to see him again! One less doctor to worry about! :)Today we met with Greyson's physical and occupational therapists. There was quite a bit of paperwork that needed to be filled out during this first appointment. While I was doing this with the occupational therapist, the physical therapist got busy checking out Greyson. She noticed (as have Andy and I) that both hips can move pretty well. She did recommend that we continue to do the stretches that we were taught while at the NICU to keep his leg muscles limber. I mentioned to her that his left leg and foot always wanted to curl under his right and she said that this is something that should be looked at by an orthopedic doctor. This is something that will be done in the near future. She also gave us a few other things to work on this week...Greyson seems much more comfortable turning his head to the left, so we need to work on getting him to turn his head more to the right, his arms and hands seem pretty tight so we are working on getting those a little more flexible. Other than that, she was really pleased with what he can do (he is only 4 weeks so it's kind of hard to determine what exactly that is). She said that he is making great eye contact and tracking objects really well. Andy and I are both really excited to start with Greyson's PT, we want to do all that we can to give him the best chance at walking some day.
Friday Grey goes into the neurosurgeon for a post-surgery checkup of his shunt. We pray its a quick in-and-out, everythings OK type appointment.
Anyway, it's been great having him home for a "normal" week. Were aren;t sure what normal is yet, but its feels a lot better these days :)
love Leigh, Andy, Grey
Saturday, March 7, 2009
Well we got out little boy back home where he belongs!!! Friday afternoon the neurosurgeon reviewed that mornings CAT scan and gave him another once-over and it was determined that the shunt was doing what it was supposed to. His ventricles were down and his soft spot on his head was clearly "less-puffy" even we noticed that right away.
So here's a quick plug for the kind of care we received at the NICU for 11 days compared to a single night at the PICU...and really you can't compare the two...AT ALL! We may have been spoiled at the NICU, but Leigh and I just had an uneasy feeling while we stayed at the PICU. At no point did we feel like the Doctors or nurses really knew what they were doing...and yes, im sure they did and grey was in good hands, but to us, the parents, they didnt do a good job of assuring us that our boy was in good hands. So anyway, that afternoon Grey was discharged and we were headin' home once again!
It's funny though, this time coming home we both felt a little more uneasy. I guess now we have all these new things to look for in the case that the shunt is not working properly, and frankly thats kinda scary. I think it's scary enough not really knowing how to take care of a newborn, but then you have a giant list of other things thrown into the mix and it just escalated our fears about taking care of him. So pretty much the first time he cried we immediately thought "oh great the shunts not working." That first evening was not easy on either of us as we felt overwhelmed and we clearly saw that greyson was acting differently than we'd ever seen him before. But then we thought, wait, he just had brain surgery, I guess he might be a little uncomfortable and crabby. can't blame the little guy, i now if i had brain surgery i'd be begging for for a handful of vicodin.
This morning Grey seemed a lot more like himself. Eating better, crying less, and giving us his cute little grins. This made us feel a lot better. And so today, although gloomy outside, it was a great day for the Gibbs house.
We all look forward to having a "normal" week and get in our new swing-of-things. Sure that includes 3 Dr appointments, but we take it one appointment at a time.
love and peace.
Andy, Leigh, Greyson
Thursday, March 5, 2009
So as we were driving to the hospital at 5:20 AM, we said to each other "Oh remember 3 weeks ago we were making this exact trip, at the same time." And both times we had that nervous/anxious feeling in the pit of our stomachs that just would;t go away.
Anyway we made our way to the hospital and really had no trouble getting around this time, we kinda know that place thru-and-thru at this point. We made it to the second floor and they did all the necessary measuring, poking/prodding of Greyson. He didn't really care for that, given he hadn't had a lick of food for 6 hours at that point. But he's a trooper and we were both surprised at how well he did provided his rumbling tummy. So off we went to the holding room where we discovered another trait about neurosurgeons...they are NEVER on time! It floored us that Greyson was scheduled at 7:30, the first surgery of the entire day, yet DR was thirty minutes late!! But what can you do, this is the guy's hands we were putting or babies life in...so we took deep breathes and held our baby boy tight.
So we finally handed him off to the anesthesiologist and watch him walk down the hall. A truly helpless feeling... A realization that as a parent you can't do anymore, you have to trust that God will guide this team of Doctors and nurses to "fix" your baby.
Waiting in a waiting room sucks in any situation, it's even suckier when you're constantly watching the clock and wondering when this thing is gonna be over, and when your continually praying to yourself that the doctor will walk in the room and proceed with these words: "It was flawless, your son did great, and everything will be better than you could have imagined!"
So it wasn't word for word what i was hoping he'd say, but the fact of the matter is Greyson did do great and his vital signs looked great, and there was no internal bleeding, and he was recovering calmly in the recovery room. And a giant exhale was had by all the family sitting with us.
After and hour or so, Leigh and I got to see our little guy... that was great and really hard at the same time. He was all hooked up, tubes all over, yellow iodine and dried blood all over his head. But it was are perfect little boy, sitting calmly with his eyes open looking at us. So, clearly as normal parents, we lost it. The nurses were very aware of Leigh's state and almost immediately ask if she wanted to hold him. Before they could finish asking, Leigh blurted "YES" So as Leigh was holding Grey I got a first look at his head and was somewhat surprised at how large the actual shunt device protrudes from his little head. But, at three weeks old, the little guys got some "growing in" to do of his shunt, and by the time he's rock'n his 1st birthday, his red mullet hairdo might just cover it up! hehe :)
The afternoon was pretty uneventful, although we could tell grey was in pain at times. We heard "crys" that just didn't sound right, its funny how the short time we had him home we were able to pick up so many of his habits and mannerisms. It was hard to see him struggling somewhat, but as each hour past, he became more comfortable.
So as we wrap up this day, we ask for prays that the shunt device is working properly and will continue to do what it needs to do to help Greyson develop like a good boy he's meant to be!
Your love and prayers rocked us good today, we felt them big time!!!
Andy, Leigh, Grey
We just wanted to give a quick update on our Grey. He's out of surgery and things went well! He is in recovery now and we should be able to see him soon. The surgery only lasted about an hour to an hour and a half and the neurosurgeon is happy with how everything went. Thank you so much for all of the thoughts and prayers! They were definitley felt this morning. We'll post more later!
Wednesday, March 4, 2009
That's what Grey would probably say, provided he could talk. Yup, the little guys head is gonna get "buzzed" but not really the buzz cut we had in mind. Tomorrow morning Greyson will go in for his shunt surgery and as scared as we were the other day, we seem to have it together this evening and are feeling strong. We have to be for Grey.
So a simple prayer tonight...May God's hands continue to hold Greyson as he undergoes his surgery. WE pray he's as tough as he was for his first surgery and will be home in time for the weekend.
A Big thanks to all for your encouraging words and prayers that last few days. Admittedly, we lost it for a while and were very discouraged by the news. it's like we took a few steps back in our faith that evening. It's funny how things always seem scarier in the evening, when your in bed and your mind races. But, time and time again things seem way more manageable when the sun comes up the next day. And, sure enough this morning was no different.
Andy, Leigh, and Greyson
Monday, March 2, 2009
Then I guess we have to put on a smile. A smile was a hard thing to come by from both LEigh and I this evening as we found out the little guy indeed will need a shunt :( We knew it was coming, it was almost like we were just trying to squeak out another week, or two or a month... we were hanging onto anything. It seems pretty heavy and hard to bare right now, and although we say to ourselves "Really, one more thing God, you really think we can handle one more thing?" we trust we can make it through.
Oh yeah, I guess I should return to my previous post and remind myself that life includes detours...and guess what? the traffic is backed up and we have to go around somehow. And we will, we'll navigate through this one and reconnect with the road soon enough.
This surgery, which is scheduled for 7AM this thursday, is "a piece-of-cake" by comparison to his closure surgery a couple weeks ago. The kicker for us being we got to take this little guy home and discovered we loved him even more than when he was first born!!! So to see him go thru another surgery is obviously going to be very difficult for us.
So with surgery come risks of scary things, things the neurosurgeon "roboticly" spewed at us. I just have a feeling most neurosurgeons just aren't the life of the party, or someone you'd particularly want to have a bite to eat with. (any neurosurgeons reading this, I apologize...keep being brilliant and helping babies like ours) We pray our surgeon again is at his best, and nails the procedure! So as scared as we are now, we've already been reminded that we are not alone, and we find comfort in this. Thank you to all, we love you and really need you these days.
On a lighter note... after coming home from work I needed to hold my boy badly. Leigh had just finished feeding him so i snatched him up, and layed on the couch with him on my chest. It was great...until I heard i rumbling in his throat. I tried to move, but it was too late, he spit up big time, right down my shirt!!! yep, I'm officially a dad. :)
love to all,
Sunday, March 1, 2009
Today Great Grandma Gibbs was finally able to meet her first great grandson, and she was as excited as any 95 year old women I'd ever seen! She kept saying "There's nothing softer." as she rubbed his face and little hands. It was a very special moment to have her hold Greyson, and to be honest a couple years ago we thought the chances of her seeing a great-grandchild was pretty far-fetched. But shes surprised a lot of people and is doing well these days!
Another busy day spent with family and friends. At times its been exhausting, but exhausted is our new reality at this moment. The quicker we except it and don't fight it the better we will adapt to it.
One large prayer request for Greyson on Monday, hes got his head ultrasound in the morning and then a trip to the neurosurgeon to evaluate the results. We have been having such a great week with grey that we are really not looking forward to this appointment. So we pray that Greyson might dodge the bullet and his ventricles will not have not increased, thus no shunt this week. But if he does need it we pray we can approach it with calming peace and understanding. So send em' our way this evening and tomorrow. We'll let you all know the outcome tomorrow evening.
I had a better photo day today, so here's a few new pics.
leigh, andy, grey