It's Been Awhile

I know it's been awhile since I've posted here.  If you head on over to Liam's Facebook update page you'll get updated there.  That's where I've been actively posting.
https://www.facebook.com/LiamsFootprintsOfLove

To Do The Surgery Or Not

The marathon doctor’s visits went well today.  Liam did so well today.

First was his eye appointment. First let me say Liam DID AMAZING with the eye doctor looking at him.  I was surprised how he never even fussed. Ok lol, about 4 months ago we started to notice Liam’s right eyelid becoming droopy.  So we brought it up with his primary doctor and she was concerned that the eyelid could start drooping over his iris which could cause some eyesight damage.  So she sent us to see an eye doctor.  Ever since he was tiny he would always look at people with his head tilted to the side and angled so he had to look out the corner of his eye (like the image to the right).  We always thought that it was him being cute.  Well come to find out he does that for a reason.  Well I’m still going to think that it’s because he’s being cute lol.  The reason why he has been doing this is his right eye is higher than his left eye. So, when he’s tilting his head and looking out the corner of his eye is to compensate for the uneven vision.  So his eyelid isn’t really droopy.  His droopy eyelid is just an illusion due to the uneven eyes.  At the moment nothing can be done about it.  Surgery can be done to fix it but Liam is too young for that.  So it’s just something we need to keep an eye on.  He goes back in 3 months to get it check out again.

Look at how crazy his eye look all dilated. 

In-between his eye doctors visit and AFO appointment he saw Dr. Albanese (his orthopedist).  That went well, not as expected but well. He had an x-ray of his hips before he saw Dr. Albanese.  So what he basically said he’s not sure if he wants to pursue surgery yet.  The way Liam’s hips are dislocated are up past his hip sockets.  His concern is that if they do the surgery both or one would basically come back out.  So it’s still up in the air.  Plus he says Liam is doing so good with getting around that he doesn’t want to slow him down.  So basically no surgery yet.  We go back in 3 months to relook at everything. 

New Braces

Latest update on Liam:

Liam had an appointment yesterday (1/8/2013) with his orthopedist and brace doctor which both went well. But let me start off with saying Liam's braces didn't really work right. Liam's feet kept slipping out of them. So needless to say they weren't doing there job and Dr. Albanese wasn't too happy with them when he looked at them yesterday. Like always Liam is terrified as soon as he sees Dr. Albanese. The fear of him stretching his ankles has been embedded in his head. Now this is mostly physiological because yesterday I was doing his daily stretching and I went slightly past 90 degrees and he barely fussed. Although Dr. Albanese and his physical therapist do stretch him a little bit further than I do but not much. The second he sees his therapist or any doctor he starts freaking out and with good cause. Since Liam sees so many people who stretch him or cause him some sort of pain like shots, I've realized he's starting to get nervous when random people and people he knows start coming around him. I'm praying that goes away because he never used to be this way. Now back to the actual update lol. After he saw Dr. Albanese we went upstairs to Hanger where his AFO's are made. Since Dr. Albanese wants them to be totally different they have to be sent to Washington state to be made whereas his current ones were made right in the office. Liam gets a whole new set braces. Hey, now he can get the Tornado pattern we wanted before lol. We are so lucky insurance covers it because we'd be up the creek if we had to pay for another set. His first set were $3,200 and I'm sure these are going to be more because they have to be sent out to be made. The brace person modified the braces he has now so we have something to help hold his ankles down until we get his new braces. So now his heels stay down and we don't really have much slippage. Why can't we keep these since they are working out? Well Dr. Albanese wants the braces to be past 90 degrees so we don't loose and progress in his ankles. So we'll see his braces in about 2 weeks.

Liam goes back to his orthopedist in 4 weeks to get his hips x-rayed to see where we stand with those. It's kind of scary thinking about his hips because that's whats weighing in the balance on whether or not he'll be able to walk some or at all. For those who pray for Liam we ask that you please pray that they aren't as bad as Dr. Albanese thought they were. It would be amazing and a miracle if Liam didn't need any kind of surgery to correct his hips. I'm not counting on it but it would be amazing lol.

Now something completely unrelated to orthopedic stuff. Liam has to see specialist # 5 because Liam's right eyelid keeps getting lazier as time goes by. Dr. Bright (primary doctor) wants him to see an eye specialist to make sure everything is ok. Her concern his that his lid could start laying across his pupil which could cause eye sight damage. We don't know when that appointment will be but we are trying to coordinate it with a time he has another appointment due to Andrew's work schedule. I am so lucky to have such an amazing husband who goes to ALL of Liam's appointments. Andrew hasn't missed a single appointment since Liam was born. Liam and I are so lucky to have such an amazing guy in our lives.

Again thank you everyone for your support. <3

Picture taken while waiting for his braces to be modified. Just click the image to make it larger.

Time For Braces

Yesterday Liam was really sick.  Running a fever, fussy, runny/stuffy nose, hot, and just a plan wreck.  Liam's temp would go from 102 when not freshly on Tylenol and 101 after he took Tylenol. Late last night his temp got up to 103 which is the temp they suggest you call your doctor.  We gave him his final dose of Tylenol for the night and it finally went back down to 101.  Liam was unable to stay asleep for the first couple hours after we put him down for the night so we figured he wasn't going to sleep well throughout the night.  But surprisingly he did.  Liam woke up at 10 this morning and seemed like a happy baby again.  Liam also felt cooler to the touch. When checking his temp this morning I was happy to see 99.  I know the flu is really going around and Liam really doesn't need something else on his plate.  I just happy he wasn't sick during his appointment today.

 Early Intervention was suppose to call us before today to let us know if Liam could start physical therapy this Thursday or Friday but never called.  The only reason we were kind of pushy about this was because it was dictating whether or not Dr. Albanese casted him or not.  Liam has only been in casts because he hadn't started therapy yet.  Andrew called a couple times this morning with no answer or call back.  So five minutes before we left Andrew called the actually company and had someone hunt her down since Liam's appointment was only an hr away.  On our way to the appointment she finally called us and told us that he could start therapy this week but won't be able to do therapy next week because of the holidays.  Being the worst case scenario type girl I figured Dr. Albanese would want to cast him because of no therapy Christmas week.  I like preparing myself for the worse lol. 

When waiting in the waiting room one of the doctors with a white coat come through and Liam immediately starting getting nervous and whimpering.  Liam is finally remembering certain things.  This freak out was a first.  When we went back to the casting room Liam took one look at the beds where they do the castings and FREAKED OUT.  He started to cry.  You know those afraid cries when its starts out as a slow gentle cry and then goes full blown?  Well this was one of them.  He even had the water works going.  He clung on to me so tightly and laid his head on my shoulder as he cried.  This is the first time he has done this.  I started to tear up but was able to control it.  The past couple appointments Liam would get fussy when he saw Dr. Albanese but never cried.  This time when he walked in Liam started to ball his eyes out.  It just broke my heart.  Still makes me cry thinking about that moment.  As I write this right now I am crying.  Liam knew what was coming up and was scarred.  We told Dr. Albanese what Early Intervention said and I was begging in my head "PLEASE NO CASTS, PLEASE NO CASTS....."  and was so happy to hear that Liam was getting fit for AFO's (braces) and not being casted.  Liam still had stretching done which was hard on him but wasn't casted (kind of)  WAHOO!!!





The design we went with for the braces

After making an appointment to see Dr. Albanese in 3 weeks we headed upstairs so Liam could get fitted for his braces.  Everyone there was really nice.  To get fitted for AFO's you have to get casted.  So Liam didn't like this part because they had to stretch his ankles to get them in the right position.  One fun part about the braces was we got to pick the design of the braces.  I really wanted the Manhattan style because it was "cool" looking but decided with the Tornado design because it would be more fun for Liam to look at.  As you can see he will glow in the dark with those bad boys lol.  They make the braces in the office so Liam will get his braces on Thursday.



So overall not a bad day. A couple tough moments for Liam but he is cast free at the moment. PTL!!!



Liam waiting to get fitted for braces

The next step is finding shoes that fit over the AFO's because specially made ones are really expensive.  I haven't done a lot of research but the shoes I have found so far are $60+.  WOWZERS lol

A Painful Cheer

Today was one of those bittersweet days.  It started off good.  Like every Sunday we attended church but this Sunday we had to leave early.  One of our friend's son who is in 11th grade had a game at the Dome today.  For those of you who watch college basketball it was Syracuse NY's dome. We dropped Liam off with grandma and grandpa at their church and headed off to the game.  As the game started I was ready to cheer Jordan on and his team on.  The time came where we finally scored and like I do with all the SU basketball games I get fired up.  Well this time I got fired up and then immediately started bursting into tears.  My good day immediately turned into a bad one as the tears streamed from my face.  Normally I am able to stop the tears from coming but in this instant I was unable to.  Every parent has a dream or dreams for their children.  One of my dreams for Liam was playing basketball in hopes that he became good enough for the SU team or maybe even the NBA.  Today I was reminded again of that dream I once had to was shattered the day Liam was born.  In that moment I was telling myself "I will never be able to cheer my son on while he is playing basketball".  Now I know that every child will choose their own dream and that's ok but every parent has a dream whether or not it is fulfilled by their child.  Will Liam ever be able to play basketball?  Probably not, well atleast not "normal" basketball.  Most of the time I am ok with this but today it really hit me hard as I cheered the  Marcellus basketball team on.  I sat there without being able to stop the tears from coming so I had to go to the bathroom to get myself under control.  So being in the front row I had to hide my face as I walked up two full sections of bleachers.  After about 15 minutes I was finally able to be somewhat emotionally stable so I head back to the game thinking I was ok.......well I wasn't lol.  I started crying again.  I'm ok now but the thought of not being able to cheer my son on at a "normal" basketball game or any sport for that matter can be hard from time to time.  I am working on it and getting better at it.  I love my son and he amazes me whether he plays sports or not.

Dreaming.....

I've always wanted to write and design children's books.  The colors and art are what really draw me in.  Now that I have a son my desire to write books have come back.  But this time my "theme" has completely changed.  Yes if you look around you can see some books made for kids in wheelchairs but not many.  There is a series called "Wendy On Wheels" and although I haven't read any of them I can see how a boy would much rather read a book with a boy in a wheelchair.  You know how little boys and girls are lol.  So I'm going to start planning, scheming and doodling.  If this dream does come true it'll probably be years from now.  But here's to hoping and dreaming that it comes true.  Now off to the drawing board :D
Until next time <3....

The Down Low On Liam

(*** All the blue text are links you can click on***)
As you all know I started a page for Liam's updates and prayer requests.  Liams Leaps And Bounds was nice enough to send people over our way.  Liams Footprints Of Love has a lot of new faces thanks to Liam's Leaps And Bounds.  This post is for all of the new wonderful people in Liam's life.  I am going to basically give you the down low on Liam's life so far.  Liam was born December 29, 2011 via c-section weighing in at 8 lbs. and 12 oz.  Liam was never able to get a height measurement due to his legs not straightening. As they went to get a measurement my husband stopped them knowing something was wrong his his legs.  Liam was born with 2 broken femurs, both hips are completely dislocated (hip dysplasia), bilateral (both sides) clubbed feet and Arthrogryposis Multiplex Congenita (AMC for short).  When I was 37 weeks pregnant Liam was still breeched in the transvere laying position so my doctor gave me 12 hrs to decide if I wanted to have a ECV done or opt for a c-section.  I didn't like the risks the ECV had on the baby and opted for a c-section.  This was a blessing in disguise because of Liam's condition the ECV would of most likely sent Liam into shock and put my into labor.  I'm not quite sure Liam would of been able to be delivered vaginally because of his hips being dislocated and his knees not straightening.  So I would like to think that Liam being breeched was a blessing from God because as bad as his delivery was it could of been a lot worse. 

After Liam was born he had to be rushed to the nursery because his blood sugar was low.  I had Gestational Diabetes which caused Liam's blood sugar to be so low.  They tried to feed Liam but he wouldn't breathe and eat at the same time so they put a feeding tube in him to try and bring up his blood sugar.  After his first feeding he was fine.  Because his legs were so messed up they did a whole body x-ray on him to see what was going on and come to find out both his femurs were broken.  As you can tell from the picture to the right his left femur was broken in the middle and his right femur was broken right at the hip joint.  You would figure that with having 2 broken femurs that you would be put in casts right?  No, Liam was put in a pelvic harness (Picture to the right).  This was devastating to Andrew and I because his legs still moved some.  Every time we had to pick Liam up he would cry.  Obviously due to his broken femurs.  This was so hard on all three of us.   

Getting Liam home from the hospital was a challenge.  Liam couldn't go in his car seat because of his femurs so we did research and came across this thing called a car seat bed.  It's basically a car seat but it allows the baby to lay flat on their back.  We couldn't find one at a reasonable price so we continued to do research and ask our friends and family to pull their ideas together.  The day came where most babies would have been discharged and it wasn't looking too good.  Then we got this wonderful phone call from out friend Jim.  He is a volunteer EMT and had a wonderful idea.  The ambulance had a pediatric back board that straps kids to the board to keep them from moving around when they are injured.  Jim had the brilliant idea that we could try and strap Liam to the board to get Liam home.  The hospital was ok with this because our Friend was an EMT and was going to ride home with us.  So needless to say Liam finally got to go home. 

The carseat bed

Liam's first time in a normal carseat

Liam's Aunt Beth also did some research and found a company called Child Care Solutions . They had a car seat bed that they allowed us to barrow it until Liam no longer needed it.  This was a huge blessing to Andrew and I. 




Liam spent the first 6 weeks of his life mostly on a pillow where he was most comfortable.  The only way Liam could be held was in the upright position like the image below.  Changing his diaper was a 2 person job.  When Liam was laying on his changing pad and would so Liam's head was facing Andrews stomach.  I was in front of Liam where his feet were facing my stomach.  Andrew had to place his hands under his hips and butt to support his legs and gently lift him while I quickly wiped him down and put a new diaper on.  Diaper changes were hard on all of us because of the pain it put on Liam. Plus the velcro on the diaper always got caught on the harness which pushed his legs around.  Being winter time Liam was unable to wear pants because of the harness so we bundle up Liam with lots of blankets to keep him warm lol.

After the femurs were healed (took about 6 weeks) Liam got a break from the harness for 2 weeks.  After his 2 week break Liam started serial casting to help correct his clubbed feet. He would have his casts changed every Monday and have his ankles stretched for a couple months then every other week for another couple months.  Liam did get a break from casting over the summer which was nice. 
You can watch the 2 videos to see how his casting was done.  Warning it's sad
Right foot casting  http://www.youtube.com/watch?v=X_vhJpFW_qs
Left foot casting(the more difficult side)  http://www.youtube.com/watch?v=sg71vvgI8DA

Top are his feet before the casting started
Bottom is his feet after his surgery

 September 14th Liam had surgery to continue fixing his clubbed feet.  Dr.  Albanese(his orthopedist) who performed the surgery did a complete release(cut) on both achilles tendon and moved some bones around. You can head over HERE for a more detailed post about what they had to do to his feet and ankles.  His surgery went better than expected.  Liam didn't need pins like we thought and what Dr. Albanese thought was going to take 5 1/2 hours only took 2.  You can head over HERE to find out more about they surgery and recovery.

Liam was in those orange casts for 6 weeks then had a couple weeks away from casts.  Since we had to short weeks this month Early Intervention took a little longer to get moving so Dr. Albanse put Liam back in casts to prevent his ankles from turning in. So Liam's been in casts since November 19th.  Liam will be in this set of casts until December 17th.  Casting has always been tough for Liam because of the stretching of his ankles.  Thinking about your joints being stretch in a direction they don't want to go and having them being really stretched to reposition them.  Not a pretty sight. 

So whats next for Liam?  Well obviously Liam needs physical therapy  to help strengthen things and trying to teach him to get around.  Liam obviously cant walk and Liam can't crawl at the moment.  Dr. Albanese even said he was concerned about him being able to crawl due to his dislocated hips.  Liam has shown no signs of crawling.  When Liam is about a year and a half to two years old he will have surgery to place the hips back in their sockets.  Sometimes this is successful with one surgery but it is possible that it might take more than one surgery.  If the hips surgery(s?) goes well and he heels properly we talk about permanently straightening his knees so he can walk some.  They way his knees will be straightened is through the Ilizarov Apparatus Method . It's this metal cage that goes on the outside of his leg, from his ankle all the way to the top of his thigh.  It is drilled in the bone from the outside in 4 sections.  Four screws at the top of his thigh, 4 above the knee, 4 below the knee and 4 at the ankle.  Andrew and I are in charge of turning the knob daily to slowly straighten his knees over 6 months to a year.  

So needless to say Liam has had a tough life and his journey isn't over.  But with friends, family and God we are surviving.  God has truly blessed us this year.  Liam has blessed so many lives and has changed hearts.  My favorite story on how Liam has affect people is HERE.  I hope you enjoy that as much as we have.

So this is most of the down low on Liam so far(there has been a lot of struggle this year, too many to write down).    There will be MANY more stories to share.  I just figured I'd catch Liam's new followers up on his Life.  Thank you for your support our family really appreciates it.