Thursday, December 15, 2011

SB clinic & Update

Wow! It sure how been a while since I've updated this blog!! So much has changed! Grayson is now walking holding onto one of our hands. Balance is still a struggle for him at this time but we are working hard on it. We joke and tell Grayson that he has 2 more months to start taking independent steps. He hasn't missed a milestone yet, and most kids walk independently at 18 months (he's 16 months now). Although, I think he will miss this milestone, we still remind him that we "expect" him to at least be trying to take a step independently. ;) We've been really trying to get him to stand on his own too, but he still wants the comfort of holding onto something, even though he doesn't need to. Right now we are battling a lack of confidence he has in himself. Grayson is now in his AFOs full time as well as detrotaion straps (from Sure Step) to hold his feet in the correct place. His tibial torsion hasn't improved any yet, but he's really just now beginning to stand and walk alot. So still hoping that it will improve in the next few years so we can avoid a surgery. But we absolutely LOVE the derotation straps. They make an unbelievable difference for him. =)

Last Friday we attended SB clinic. Wow! It was our best clinic yet! Our urologist said his kidneys and bladder look perfect and the reflux he had on the one side was gone! Yay!! Awesome news =) Ortho said Grayson's hip has improved "significantly" and for a SB kid he said he's never seen such improvement in a 6 month period! Great news! Its only about 6 degrees from where it should be and his socket is twice the size it was 6 months ago. So, more time in the hip abduction brace but at least its doing the job its supposed to (and Grayson doesn't mind). And for once Grayson was actually cooperative. He kicked for the doctor when asked and showed him his great leg movement. Ortho was very impressed with his walking, especially since he last saw him in September and he was barely even starting to walk. We also saw a pediatric physicist. She said Grayson looked really good and was impressed with how well he is doing. She said as far as SB kids go, he's "at the top". =) Yes, we LOVED hearing that! We didn't get to see Neuro since he is no longer part of our SB clinic. He is now only practicing at one hospital where he is the director of pediatric neurology. But his MRI in August showed his head still was stable and there was no concerns there. All in all, everyone was thrilled to see his progress, as are we! We are still in absolute shock that our little man who functions at L4-L5 is doing so well!

We have recently saw some new movement in Grayson's legs. He hasn't ever really shown any signs of hamstrings or hip extensors before. But in the past month we've caught him numerous times lying on his stomach lifting his legs (lifting his feet towards his cute little booty).  And when we lift him in the air on his tummy, he can pull his legs up straight instead of them just dangling. So exciting!

We also signed Grayson up for Intensive Physical Therapy starting in January. He will go to pt every day for 2 hours over a 3 week period. The goal is to focus on strengthening lower abs, hamstrings, glutes, and hip extensors. He will also spend time on the non-weighted treadmill where they will work on the correct walking pattern--stepping heel to toe. Additionally, they'll be working on his balance. We are very excited to give this program a try. We've heard some wonderful things about it!

Last week we started Grayson on a new bowel management program. He's been taking miralax for over a year now to help with constipation. After watching Dr. Levitt's Live chat  we started using a senna instead. We.love.it! Instead of going all day long, Grayson now is going once a day. Awesomeness! We give him a dose of Little Tummies Senna before bed each night and once he wakes up in the morning he empties out the system and then he's clean the rest of the day. So, so nice! I wish someone had told me about this senna months ago!

Grayson is keeping us plenty busy! He's your typical 16 month old...into everything and always on the go! He still has a love affection for our cats. He is constantly harassing them, pulling their tails and pulling out tufts of fur. These cats are so good with him. We can't believe how they just lay there and tolerate it! The kitten (who's not a kitten anymore) often naps with him in his crib. I find them in there together quite often and its so cute! Grayson's new favorite thing to do is pull ornaments off the tree and throw it to the cat so he can play with it. He's obsessed with walking and is always tugging on my pant leg so he can walk along with me. =) Oh, and we've began the toddler temper tantrum stage when he doesn't get his way! Full on hitting, biting, scratching, and pinching! He is beginning to talk more and says 7-8 words (his favorite right now is mama), a few animal sounds, and 7-8 signs. One of my favorite things is when he mimics my facial expressions...super cute especially when I'm giving him a "mad" look because he done something he shouldn't. So hard to keep a straight face when he gives me the mad look back =). Grayson is beginning to eat better. Loves his pediasure and is starting to accept foods off a spoon again. He still nibbles on finger foods but doesn't eat really enough of anything to matter. Right now he's living off pediasure. Our pediatrician wants him to stay on it till at least 18 months. Hoping he'll gain some weight. So far, he hasn't gained a single ounce in four months! 700 calories a day and this kid doesn't gain weight! He is go-go-go! Guess he's burning it all off!


Here's Grayson cruising along one-handed:


Supposedly "napping":


Enjoying the Fall weather in Georgia:


Showing off his walking skills at Walk-N-Roll Orlando:

Visiting Santa:


A sneak peak at him walking:

video

Thursday, August 25, 2011

WALKING!!!

So we have had Grayson's nimbo walker for about 2 weeks now and Grayson has shown absolutely no interest in it. Everyday we stand him up in the walker and try to get him to go. Usually he just sits right down and crawls off. Then yesterday, I stood him up in his nimbo and....he took off!! He walked across the living room! I couldn't believe it! So I turned him around and yep, sure enough he walked across the room again! So today we took him outside to go for a stroll. Check it out!

http://www.youtube.com/watch?v=-kfH2PjFAM8

We are proud parents tonight! Grayson is barely a year and has just started walking with his walker!

Yesterday, Grayson was full of surprises because I also found him doing this:


Looks like the beginning of a very mobile little guy!! =)

Saturday, August 6, 2011

1st Birthday and Taking the First Steps!

So this week our Little G turned 1! Wow, that sure went by fast!!! Our neurosurgeon finally cleared him of not needing a shunt! Yay!!! What a great birthday present! =) So to celebrate with took the little man camping and to his favorite place...the beach!


Where he can eat the sand...


Wash it down with some water...




and laugh at the sea gulls.


Then that night he had his very own dragon cupcake...


To smash with his feet!




Then today, our Little G decided he was ready to take his first steps with his play walker!! We are waiting for his posterior walker to come in and thought we'd give his play one a try!



Not bad for his first steps =) and he had one very excited Momma and one very excited Daddy!! We are truly amazed with how well our little man is doing!! And, by the way, he is taking those steps without any braces! =) Amazing how 1 year can change so many things~bring new hopes, alleviate many fears, and love more than words can describe! Happy Birthday Little G!!!!


Tuesday, July 19, 2011

Updates

It's been awhile since I've updated...Grayson has been keeping me quite busy!! In June we had the opportunity to take Grayson to Boston to attend SB Clinic there. The doctors were awesome! We were very impressed with their knowledge of SB and love for finding the best treatment. Since we had not had any bladder testing done in Florida, we were very happy that they did a VCUG study and urodynamics. The VCUG study revealed that he has level II reflux in his left kidney. Urodynamics revealed he has an overactive bladder constantly contracting and his bladder is tiny. =( We were very disappointed to hear this especially since we had been asking the urologist in Florida if everything was fine as far as his bladder and kidneys were concerned. He didn't want to do any testing unless there was a problem.  Well, honestly I didn't really like this approach which is what led us to Boston to see some of the best doctors in the country. They recommended we start cathing him and start Ditropan to relax his bladder. So, since we have returned we have tried cathing...unsuccessfully and have been waiting to see a new urologist here. Yep, it's been 6 weeks and we still haven't gotten in to see the uro. Our appt. is Friday...finally! We are taking the results from Boston and getting this urologist's opinion for treatment and hoping he can teach us how to cath.

We really, really also liked the neurosurgeon there! He agreed that since Grayson does not have hydrocephalus and is doing great physically that we did not need to do a sedated MRI at this time. We could wait till he was 2! We were very happy to hear this since our neuro down here was really pushing for it but we weren't comfortable sedating him for a MRI "just because". We did however get a Flash MRI done of the brain to make sure his ventricals were still stable. And thankfully they are! We have escaped the shunt!!!

Ortho, smortho...not our favorite part of SB. Grayson's hip dysplasia isn't improving a whole lot. While his hip is staying in socket, the socket is still very shallow. So he gets to stay in the hip brace a little longer. =( Also, his tibial torsion has not improved and the dr. said it is pretty severe  in his left leg. So we are now in new braces. I did some research online about treating ITT and found a brace called the "Wheaton Brace". So off to the ortho I went and home I came with a new prescription for the Wheaton Brace. The ortho dr. said this was our last option and if it didn't work he recommends doing surgery when Grayson turns 2. The Wheaton Brace seems to be a very good option. It keeps the knee bent at a 90 degree angle and puts all the torque onto the tibia not the knee or hip (which was the problem with our last braces with the thigh cuff). He only has to wear them at night and he can wear the Wheaton brace with his hip abduction brace. It is supposed to correct ITT in 6 months when worn at night. Fingers crossed!!!

Now on to some fun stuff! =) Since my last update, Grayson is a crawling machine and boy is he quick! I can barely keep up with him! He also started pulling to a stand a few weeks ago and is just beginning to try to cruise. He can take about 3 steps along the couch before stopping. We are just truly amazed at how fast he is progressing! We have even gotten him to take a few steps behind his toy walker (with our help of course)! All encouraging signs! 10 months ago I didn't believe he would be doing this well seeing as he functions at an L5 but our little guy continues to prove us wrong!

Here's a few new pictures:
Like I said, into everything!! This time he pulled the basket on top of him and trapped himself! Super cute!


Grayson LOVES climbing and sitting in his chair.


\
Again, into everything! This time its the dog food. This could be his most favorite thing in the house! Baby gate was a necessity! =)


Super cute in his giraffe hat. He never lets me put hats on him!


Standing and dancing to the music at his Leap Frog table. He LOVES that toy!


For all his hard work we rewarded him with his own kitten! He LOVES cats!!


Grayson and Yoda playing =)


A new favorite thing...standing in his crib tossing out his toys, pacis, etc.


Standing and pulling toys out of the basket


Getting his toys off the coffee table

As you can see he is quite mobile and really enjoying it! It seems like every time I turn around he's either standing or into something! And I LOVE IT!! So very proud of that little guy! We are very excited to celebrate his 1st birthday on August 2nd. Boy, did that year fly by!! 

Wednesday, May 18, 2011

Crawling!!

Grayson has finally started crawling after spending the past few months rocking back and forth. About a month ago he started to move his hands forward and then his legs but never did it together. Then last week he took about 2 "steps" towards the cat. And here we are a week later and Little G is crawling all over the place! He's still a little wobbly but he's going!! So proud of him for accomplishing this at 9 months!!!
video

Here comes trouble!!

Last week we also met with another family that has a little guy with SB. His mother is a photographer and took some time with Little G and captured some awesome pictures! I love his little smile!






Sunday, April 17, 2011

On the move!

Last month Little G decided it was time to roll to get to where he wanted to go! He was 7 months the first time he rolled across the room. He's been able to roll both ways for a few months but this was the first time he has done it continuously! It was so exciting!! Little G started sitting on his own at 6 months and it took 1 month of that for him to get bored staying put. He is now 8 months and scooting all around! He will go from sitting to rolling and rolling to getting on all fours rocking back and forth. This week I've even caught him reaching for toys while being on all fours supporting his weight on one arm. I don't think crawling is too far off but only time will tell! For now we are ecstatic!!

Also, two weeks ago we got his new AFO's with a thigh cuff attached to help his ITT. They are holding his legs straight now and we're seeing improvements in his legs already! =) And, they really help him to weight bear and stand!

Here is Little G standing and playing in the mirror:


Here he is in his leg braces standing in his exersaucer:
 

Standing at the couch in his braces:


Sitting playing with his favorite toy...a cell phone:


Now rolling around with the phone playing:

Sunday, January 23, 2011

First visit to SB Clinic

At 4 months we went to SB clinic for the first time. We love the head RN of our clinic! She is so sweet and just loves Little G. We had met her while I was pregnant and she came to visit Little G in the NICU after birth. Our first visit was pleasant and successful. We had taken Little G for a Renal u/s and a Head u/s a few weeks prior so we were getting the results that day at clinic. We were a little anxious but fairly confident in the outcomes (a mother's intuition is alwaus dead on). The renal u/s showed no reflux or backing up in the kidneys- yay! The urologist said the u/s looked really good. Great news for us but not much of a surprise. Little G pees constantly! He does dribble however and we really don't see any type of stream (only during a sneeze or cough). I suspect he has a loose sphincter but we will have to wait to find out. No problems in the poop dept. Next, we saw our neuro. Little G's ventricles are still stable and in normal limits as they have been since birth. Sigh of relief still showing no signs of needing a shunt! We will have our next head u/s when G is 7 months. Last, we saw the ortho. Perhaps the one we were most anxious to see. Little G's left foot has always drooped and recently his left hip started popping as well. This really concerned us. The ortho said he has Developemntal Hip Dysplasia. DHD can happen in any child and isn't SB related but SB complicates it since the muscles don't always work properly to hold the hip in place. Little G will need to wear a hip abbductor for the next 3-6 months for around 16 hours a day. The hip abductor basically holds his legs in a "frog" position to help form the socket the Little G is lacking. Surprisingly, Little G doesn't seem to mind wearing it. We also found out that Little G's left leg has Internal Tibia Torsion (ITT) which means in his lower leg the tibia is twisted. Again this is common in all babies- has more to do with position in the womb as does the hip dysplasia. My husband and brother both had it. This is something that should correct itself once he starts walking and/or by the age of 3. The ortho felt that the hip and ITT was what was causing his foot to droop. This was such a relief to us! All this time we had thought it was nerve damage and that nothing would help it. So we actually felt like this was a good thing when normally most parents would be devastated (but with SB everything is relative!). So all in all it was a good visit to clinic. One thing I didn't like about clinic is that you don't get to choose what dr.'s you see. You see whichever neuro, uro, and ortho that are scheduled that day. But the nice thing is you get all your dr. appt out of the way at one time in one place. Still debating whether we want to stay in clinic with random dr.'s or choose a dr. in each field to see independently. We will probably go to clinic at least a couple more times before making a decision.

Wednesday, January 5, 2011

The Big Arrival!

My C-section was scheduled at 38 weeks and true to form my little one decided to come on that day but early! At 5:00 am my water broke (c/s was scheduled for 4:30 pm). He clearly already had a mind of his own =). Since my water had broke and his sac was rather large (think Grapefruit/large orange) the dr. wanted to do a vertical incision. EEK! Not what I had pictured but it was best for Little G. At delivery they discovered Little G had ruptured his sac...since all the amniotic fluid was gone and with all his wiggling, he had ruptured the sac. Panic set in!! Especially when the doctor followed that statement with "His legs aren't moving"! I thought, "How could this be??? I felt him kicking for the last 20 weeks!!" They quickly wrapped his back in a saline soaked bandage and sent him off the NICU. I was able to hold him very briefly (well he was laid on my chest so I could see him) before being taken to the NICU. I couldn't wait to get out of surgery and to the NICU to see my little man. Once the anesthesia wore off I was taken to my room, but not without a quick stop to the NICU to see my little man. And yes, he could move his legs! He must have been in shock in the delivery room from birth.

Here is a picture of him right after delivery in his bandages (they wrapped all his back and top of legs)



And here he is on the NICU (just to give you an idea of what it looks like with all the machines)



The next day Little G would need to have surgery to close his back. Luckily for us we were prepared for this. We had met with several neurosurgeons during the pregnancy and had already selected the best choice. This made it much easier!

Here is Little G headed off the surgery:



And here he is post surgery (off the respirator and IV but does have a feeding tube):


There is only a piece of gauze covering the incision inside the diaper, no tape or anything!

Surgery was a success! Little G pulled through like a champ. We did get a bit of bad news though...the  specialists had been wrong about his lesion level (this is VERY common so do not get your heart set on a level till after surgery!!!). Instead of a S2-S5, Little G had a lesion at L5-S1. He would need leg braces to walk. But let me tell you...all the worrying I did about his condition while I was pregnant disappeared when I laid eyes on him. I had heard this from SEVERAL moms but I didn't understand till G arrived! Normally this would have been upsetting news but I didn't even flinch. I knew my little man was going to be just fine. He was absolutely perfect!

Little G was on pain meds and sedatives (he was very active after surgery--tried to pull out the respirator and IVs not to mention trying to roll off his belly) for the next 2 days. They took G off the respirator within 24 hours of surgery...as soon as he was able to breathe on his own again. After getting rid of the IV they had to put in a feeding tube so he could get nourishment. I still was unable to feed him because the dr. hadn't cleared him to be picked up yet. I had only been able to lay him on a pillow on my lap up until this point. At 5 days old he was off of all the machines except heart monitor and oxygen monitor (standard in NICU) as well as the feeding tube.  Also, he was promoted to the lower level of the NICU where we were able to care for him ourselves for the first time. AND....the dr. cleared him to be held! I could finally hold him like a regular baby! And I could feed him! He had his first bottle on day 6 and within 24 hours he was taking the full 2 ounces every 3 hours and could have his feeding tube removed! He had to take his bottle consistently and finish it for 24 hours before they would remove his feeding tube.


His is a picture of his incision right after surgery (looks scary but it DOES get better!) And yes, he does have an IV in his head but this is only after he pulled it out of both hands...last resort!



Looks much better now... hardly even noticeable (here's a picture @ 2 months). His scar basically still looks like this but less pink and he lost his "tail"--the scruff of hair on his lower back =). Little G is now 5 months.



After 8 days in the NICU Little G was released! He still was not showing signs of hydrocephalus, his ventricles were stable and within normal limits. SB babies usually develop hydrocephalus after back closure if it isn't present in utero but can happen anytime during the first year. We would have to bring him back for head u/s over the next year to monitor for hydrocephalus. So we were ecstatic to hear that his head was stable! And even more ecstatic to take our little man home!

Here he is ready to go home:



Getting the news...

When I was 20 weeks pregnant, my doctor called and said there was a problem with my blood work. My heart sank! My AFP levels were off the charts and I had a 1:4 chance of my son having Spina Bifida. I would have to see a specialist for a Level 2 u/s. The u/s confirmed our worst fears. Our son had Spina Bifida myleomeningocyle. Good news...it was low. The dr. thought it was S2-S5 and he didn't have hydrocephalus in utero. Bad news...his back was open with a large protruding sac filled with spinal fluid. He would need surgery 24 hours after birth to close his back and I would need a c-section at 38 weeks.

We went home that day and started our research. And boy! Is the internet and Google cruel to SB! Most of what we read was not true! Thankfully I found a community of SB moms on babycenter.com and they were a great resource! Also, I searched high and low for blogs of moms of SB kids so I could read and see pictures of their kids (a couple of my favorites were "Our Little Gibblet" and "Tear and Mend"). This was so helpful in showing me that SB kids ARE normal and healthy! I loved seeing kids and how happy they were. This was so reassuring to me. I also reached out to these moms through email and got lots of reassurance and help from them. You can ask SB moms anything and they are happy to help you and answer any of your questions!!

One of the things I read about was the lemon sign on the u/s. One of the things the dr. will look for in the level 2 u/s is at the head to see if it has a "lemon" shape. Yes, I did think my son would be born with a head shaped like a lemon...but NO he wasn't! Here is a picture of it in the u/s:




And this is a picture of him at birth...see his head is perfectly normally shaped =)

The dr. also took LOTS of pictures of his spine...but we couldn't tell anything from them. I also opted to have an amnio done to make sure there weren't any other problems with our little man. The amnio came back clean and the procedure was pretty simple. I felt no pain and I loved seeing my little man's spunk in the u/s during the amnio. He kept swiping at the needle like he was saying "Get that thing out of here! I'm perfectly fine!!"

Also, when I was pregnant and even after Grayson was born, I spent hours scouring online looking for anything that could tell me about which vertebrae corresponds with what nerves...and what muscles the nerves controlled. I could never really find anything that could explain this clearly to me. A little while ago I found this blog and it has a wonderful explanation of levels, lesions, nerves and Spina Bifida in general.

http://aboutspinabifida.blogspot.com/2012/06/lesions-levels-sensory-and-mobility.html?spref=fb