Six months post-op....

Today, was Faith's six month follow up from her gastrocs surgery at Shriners.

We had an incredibly busy day...8 am Shriners, 1pm double therapy and 2:45pm meeting at supply closet. So we got to Shriners early with a letter in hand from our PT, discussing our current concerns about her orthopedic issues. We have seen a new crouched gait in the last month (where as before her surgery, she was hyper extending her knees) as well as some changes in her pelvis alignment in turn affecting her gait, creating a "windswept" step. Also we had seem quite a bit of muscle atrophy in her lower calf, just where her braces start. You could see and feel a distinct line where they started and the muscles went from normal feeling to very soft. So first off, they got us in with the PT to have a look at her structure and how she was walking and all the good stuff. She told me that Faith's crouching was a result of the new range of motion in her ankles and calves as well as shortening of the muscles around her hips. Although no one wants her to walk crouched, crouched is better than hyper extention. She also said it was a functional gait for her that also provided her with a measure of stability. She was not worried about the tibial rotation that we were concerned about because she said that it was coming from her pelvis also not her leg. She did say that Faith had Patella Alta- where her patella (knee cap) rides too high in her knee area from the muscles pulling. Apparently very common in kids with CP, but yet another issue that I had never heard of or even thought of!
Of course, after all our concerns and worry and all the effort our PT went to to send a letter... Faith did almost none of those things while we were there! Actually, she made a BIG FAT LIAR out of me! When they asked me to put her in her walker, she walked out into the hall and proceeded to walk up and down the hall for over half an hour...until the doctor finally came to see us! She had never walked that far or that long...EVER! I stopped briefly to chat with a nurse we knew and in about 30 seconds, she had made it to the double doors at the end of the hall about 50 feet away! She walked straight without pulling to one side and she did not do her soldier march that she usually does! I know, I know, A LIAR!
All in all, they seems thrilled and very happy with her progress. They gave us the go ahead to take her braces off at night as well as her knee immobilizers and to take them off during therapy! WOOOOPEEEEE! As well as taking them off when she is playing in the floor. They said she needs to stay in them about 80% of the time now...(although, I can't figure out how keeping them off for therapy, play on the floor and sleep equals anything less than 80%) but I guess we will figure it out! We went to therapy afterwards and started right away with working with no braces. They told me today that the next six months need to be muscle building time. And you can tell she needs it when those braces come off. She is soooo weak.

So tonight our girl went "commando" no braces no knee immobilizers...just SOCKS!

FYI: for those of you who gave me all the good advice about inviting our PT over, I made a preliminary move and invited her to lunch, next week. She seemed really excited and asked how early we should meet so we would have time to talk before we went to therapy! LOL! So we are going to a local dessert/sandwich deli that Carl says is really good. Can't wait! She is so wonderful! She got lots of compliments from the folks at Shriners for her dedication and commitment to Faith! WHOOOOOO, E, we sure do love you!

This place is a circus...

I may have mentioned a few months ago that Faith was asked to be a representative child in the Hejaz Shriner's Circus, this year. We got the call, tonight, from the wheelchair team confirming the date, March 27 at 3pm. I am excited for her because I think she will love the animals and we get front row tickets! She has never been to a circus before so it will be an experience! Our family will be brought up on stage and be part of the circus! Last year some of the kids got to ride some of the animals. Amazing, right! They are also giving us $20 in spending money for food and gifts! I put in a word with the gentleman who signed us up, asking him to commandeer some extra tickets for Faith's girl scout troop to go. We'll see what happens but he seemed pretty sure that he could get some for us! The other big thing is I have been asked to write an article telling about Faith's life and how Shriner's has helped her. I am excited but slightly nervous. I feel compelled to tell her story but a writer, I am not. So I have to start now! I really hope that our troop will be able to accompany us, I think it would be great for the children to see and hear some of the struggles Faith has overcome in her short life not to mention, have a little fun too!

THANK YOU SHRINER'S

THANK YOU SHRINER'S HOSPITAL FOR CHILDREN...

I wanted to post a little about our experience while we were in the hospital. Faith was admitted the day before surgery and we were lucky to have a room all to ourselves. I was initially worried that we would have problems because I am not one to let go of Faith's home meds. We have spent a lot of time in hospitals and nurses/hospital staff don't like to give up control. So I was all prepared to have a battle royal to keep Faith's meds. With Faith's g tube and weird feeding schedule....I am NOT giving up control to ANYONE! So after some feather ruffling and policy quoting I finally was referred to the in house pharmacist who amazingly agreed to let me keep our meds as long as we informed nurses when we medicated her and kept her meds with us at all times. ( I wonder how we managed all these years on our own! LOL!) Anyway, after they realized we knew our stuff we were included in all the meeting and talks about Faith. After surgery we were sent to the EPACU- a critical care room with a nurse in the room all the time for fragile children (b/c of her seizures). A nurse was in room all night and they were quiet and helpful; watching closely for signs of pain or discomfort and keeping a close eye on our med regimen. The next day we were moved to another room, private and wonderful. During our entire stay we were respected and treated like a member of the team. The nurses were helpful and kind and they seemed to gravitate to us in droves when I would start medicating her or talking with a student nurse about our life with a special needs child. At one point there were at least 6 nurses sitting around listening to me talk about dealing with feeding tubes, seizures, meds, feeding schedules, hygiene etc. I think they were fascinated to hear real life experiences and successes and what worked. We were constantly questioned about our techniques and we even had a student nurse who spent several days following us around, learning about Faith and her life. We saw all Faith's doctors at least twice a day and they brought us copies of her x rays before and after. They have a wonderful child life program- arts, crafts, games, book readings and a STELLAR pet therapy program that Faith just adored! The cast team are wonderful, we just love them! The women are so diligent and caring- our dear Stephanie, cast tech, gave Faith candy cane legs for her parade. We love you, Stephanie! When our time came to go home we were helped out by two wonderful nurses who helped us devise a way for Faith to get in the car. I just wanted to give a snap shot of our experiences at Shriner's for other families out there who may be in need of their services, one day. THEY ARE WONDERFUL, TRUST ME! Last week I was approached by a Shriner asking us to let Faith be a representative child in the Shriner's Circus in the spring. We, of course, said yes! So Faith is going to be a star in the circus in March! Pictures to come!

Thank you, Shriner's!

Post Surgery pictures....

Faith's feet before surgery..

Post surgery....

OK, so you can see that Faith surgery was successful! Pre surgery she was so tight that she could no longer put anything other than her toes down on her left foot. On her right foot she was so distorted that she rolled inward over where her arch should be. When we went to Shriner's on Thurs., I was prepared for the worst. Blood, carnage, sores etc. But it was nothing like I imagined! She had steri strips covering her wounds but when they came off the wounds were almost paper thin! SO relieved! The range of motion is amazing compared to pre surgery! These pics were taken right after they removed her casts and immediately you could see a drastic difference! No longer, is she pulling out on her right foot or in on her left foot. They just hang down like "regular" feet! I got more good pics to post later, but her foot was almost completely flat footed w/o any pressure applied to her! CRAZY! I just can't get over the difference! We are thrilled with the results...now we just have to see how she does once she comes out of the casts for good. She seems to be having some pain in the night, lots of moving around and restlessness, in her legs, but nothing serious. She comes out of these casts on Friday the 18th and straight into new AFO's. So just about 11 days left in casts. They kept the splints on so she is still very hard to move but we were able to remove them for a little while and she was so happy to bend her knee. I am going to post a lot more in the next few days about my crazy few days with my mother and Faith's debut in the town parade! AWESOME!

Updates on the casting...

Faith had her first follow up appointment on Thur., at Shriner's. They windowed her casts-meaning they cut squares out of the back of the heals to see if she was having any skin breakdown. She suffered severe pressure wounds during all of her previous casting "experiments". But this time, NO WOUNDS!!! YEAH! Everything looked great! We waited FOREVER to see our dr, but in the end we saw someone else, that we have never met. He said for us to come back in just 2 weeks, for them to cut the entire casts off. If she has healed well and seems to be doing good, then they will try to mold her for new AFO's and she will go back in casts for 2 more weeks while we wait for them to be made. So if all that goes as planned, she will spend a week less in casts than we expected! Which is a good thing. I am still sweating the inpatient rehab thing, they mentioned it again on Thurs. . I guess we will have to wait and see...... Did I mention, I HATE waiting.......
We are starting back to therapy- OT and ST, anyway- today. I know she is getting bored at home so we are trying it today with OT, to see if she can tolerate it. If she does OK, then we will try ST, on Wed. She has been wanted to get up and try walking with me holding her arms. She has been able to do this for a long time, so I let her for a couple of times over the weekend. She didn't seem to be experiencing any pain and she was laughing like crazy!! AND her feet were flat on the floor!

My baby loves "babies"

Faith has come so far beyond what so many "professionals" said she would....

They said she would be "a vegetable" that she wouldn't walk, talk, eat. She has, to an extent, proved them wrong on all fronts. She is far from their definitions. She is a vibrant, brilliant, endearing, beautiful, loving little girl. I am happy with that!

Now she has had lots of favorite toys, in her life...rattles, spoons, blankets, books. But her new LOVE is "babies". She is an only child who does see babies, but not on an everyday basis. Recently, she has become this little MOMMA who loves to hold "babies" of all sorts...bears, baby dolls, kitties and the like. She will hold them, in just the right way, rock them back and forth and she has this particular way of holding them just like she is supposed to do and it has to be just right!! It really strikes me as funny b/c I have no idea where she gets it from. She knows to put the baby bottles at their mouths and that you should pat them on the back! It just cracks me up. So today, I saw her holding her bear, the Build a Bear that she got to make at Shriner's, and she was treating it just like a real baby! Don't get me wrong, it's fabulous! But I can't figure where she got it from. SO cute, she is!!!!! Maybe she has a future as a nanny or something having to do with babies!

Gastrocs Release....

So we are finally home and trying to find a new routine with life in double casts and knee immobilizers up to "our" armpits! Faith has done really well since her surgery. We had a FANTASTIC anesthesiologist, who worked really hard to find a concoction that would keep her from her prolific vomiting, after surgery. It was an astounding success! Her surgery, itself, went great. They were able to lengthen all the muscles that they had planned except for one on her right leg. But it was cool b/c they cut this muscle and actually attached it to another one, close by. It wasn't something we had discussed beforehand, I didn't even know they could do that! Forgive my stupidity, I just never even considered that. How you can take one muscle that is extraordinarily tight and cut it, then stick it to another muscle that does something completely different and then they both work!!!????!!!>>> CRAZY.......

We got to see copies of her xrays of both feet before and after surgery. It was AMAZING! The before shots showed TONS of misaligned bones in her foot and ankle areas. Some were going in completely different directions, some were smashed together, some were almost upside down. The after surgery xrays were astounding! They weren't perfect BUT they were about 85% better! Most of the bones were much closer to the right positions and all were better aligned! I don't know tons about the bones in the foot but even I could clearly see a dramatic difference! It is so exciting and I am so hopeful that this will help her walk~!

So she got out earlier than expected and I will have to post more about our experience while at the hospital. (Don't worry, it was remarkably great!~) Now we just have to learn how to carry this kid (she's basically like a long, flat piece of wood that is too long to fit through a doorway! LOL!) We did get our hands on a reclining wheelchair with elevating leg rests after MUCH work and DAYS of tracking! It's way too big but we made it work. So now I REALLY NEED A MINIVAN or wait..... a 15 passenger van. ARRRRGGGGGG.... I am soooooo embarrassed that I am admitting that!!!! LOL~!

Surgery preparedness....

As our surgery date draws near, I am constantly stiffling panic, fear, worry, irrational thoughts and more fears! This is going to be Faith's 5th surgery, her first four in her first 3+ yrs of life. So we have been fortunate that we have had 2 good yrs w/o any. Each surgery she has had, I suffer from severe anxiety and overprotectiveness. I have fought many an ugly battle with nurses, doctors, nurse managers and even heads of departments! I have repacked Faith's hospital bag twice in the last two days. I get worried about the most irrational things- nurses who want to dose all of her regular meds, techs who can't get veins, doctors performing surgery on the wrong body part... then the really crazy stuff.... leaving a medicine at home, forgetting a vital nessessity, our house burning down while we are gone, someone losing our dog at the kennel.

I just can't help myself. Of course, I worry about the big things! Something going wrong, her having a bad reaction to some medicine, a problem with her neurological status. I know that GOD tells us not to worry... but this is my struggle. I know it stems from our lack of control in all things Faith, but she is so precious.

My main way of dealing with this is overpreparing! I have 2 running lists going, right now. I have about half the things crossed off but I keep adding things to them! At least we are only an hour and a half away, this time. So if we need something bad enough, we can go back. The other thing I am anxious about is that only one parent can stay with Faith. So we are trying for the Ronald McDonald house but won't know until Friday afternoon. The reason I am worried about that is b/c with my diabetes, I often suffer with low blood sugar in the nights. Carl is always there to help me and get my sugar back up. So I will be there with her w/o Carl. I am going to try to keep my sugars up before bed. Better high than low those nights, I guess. We are so busy the rest of the week I am hoping that it will keep my mind off things, as much as possible.

I'm so excited...

Well after what seems like an eternity fighting the "system", we finally got the call that Faith's correct chair is in! I can't believe it! When they said that they had to order a replacement, I was preparing for the worst. Maybe months of waiting, but for once it wasn't even two weeks!!!! I'm so excited! We are going to Shriner's tomorrow, for Faith's pre op appointment. I am really praying that they don't pop any suprises on us. There has been talk of reconstructive foot surgery in the future, and I am praying that Dr. doesn't say that he wants to do it now. Anyway, then we get to go pick up the new chair. I really hope that everything is right on it, this time.

ADDED NOTE:
We just got a call from Faith's PT (see previous post) and she was able to work out a deal with our therapy center, so that she can continue to treat Faith, even though she is leaving. We will be her only pediatric patients, now. I am so moved by this gesture. How touching....

Surgery

So we had Faith's appt. with Shriner's, on Monday. They said that alot of children, like her, have osteopenia. They didn't seem that concerned about it, but they did say that we really needed to have the gastrox release surgery. We have been putting it off for several months, trying to get her closer to 6. So we decided to schedule it for Nov. She will be in double leg casts to her knees and knee imobilizeres, too for up to 6 weeks. I am DREADING it! But I guess it's better to get it done before we start school, next year. If anyone out there has been through this surgery, contact me, would love to talk!