My Big Brother - Chad

The last couple of weeks have been very hard for me and my family.  The day after Asher had his hydrocele surgery I recieved a call from my sister letting me know that my brother had been found unresposive at home and had been rushed to the hospital.  I packed Asher and I up and raced to Salem, VA to be with my mom, stepdad and brother.  When I left the house I had hope that things may be ok.  Less than an hour into my drive I recieved a call from my mom letting me know that I needed to pull over.  The news was and still is devastating.  I feel so very fortunate that they were able to keep Chad on life support long enough for me to get there and say goodbye.  Getting to hold his hand, run my fingers through his hair, and kiss him goodbye is something that I will always cherish.  The entire week still seems like a bad dream.  Losing my brother, helping plan his funeral, cleaning out his apartment and helping to care for his two wonderful daughters Iliana & Raevien helped to distract me from the reality that he's really gone.  I still can't process that I will never again get to hug my brother, see his infectious smile or hear his great laugh.  There is an emptiness inside of me right now that I'm not sure will ever go away.  It's hard to imagine my brother not being there for his daughters whom he adored and who adored him.  My boys will never get to truly know their uncle.  I will miss my brother everyday and he will always be in my heart.

Relieved

Asher's surgery went great!  It was very stressful but he's already up and crawling around.  He had a hard time coming out of the anesthesia but he's doing really well now.  His urologist said that he tried to reinforce the area of the hole twice as much as he usually would.  He did say there is a chance that this could happen again because the location Asher's shunt drains is right above this area.  I'm really hoping this is our last surgery for this issue. 

Thank you everyone for all your thoughts and prayers.



Coming out of anesthesia



Surgery...Again

We've suspected for a while that Asher has an inguinal hernia.  We've noticed while giving him a bath that the right side of his groin area is getting very large and swollen.  I took him to his second urorolgist appointment on Monday and the doctor told me that it not only looks like a hernia but that his hydrocele has also come back.  Asher had surgery for a hydrocele about a year ago but because the hole was so large it seems like it has reopened.  The doctor said that this is uncommon but it does happen.  The surgery was scheduled for the end of April but the area is staying enlarged for longer periods of time and the doctor thought it would be a good idea to move it up.  I wasn't expecting it to be scheduled so soon (tomorrow) but I'm glad that it's going to be taken care of and I'm hoping that we won't have to go through this again.

Playing with Mom's scarf

On a lighter note...we ordered Asher's Kaye posterior rolling walker yesterday.  I also ordered the blue camo decals to go on it to make it a little more fun.  There weren't a lot of options to choose from.  The rep from the company asked me if my husband is a hunter which I thought was really funny.  I didn't think camo was just for hunters anymore?  Mark asked whether the guy thought he was out hunting smurfs.  Too funny.  We also ordered Asher's new afo's and decided on the jolly roger (skull & crossbones) pattern.  I think they'll be so cute.  I went back and forth a few times on the pattern.  I'm sure the lady at the orthotists office thought I was completely neurotic.  The last time I made Mark call and change it because I was so embarrased.  We should be getting them in about a week.


Asher's current afo's

   



New AFOs

I took Asher to see the orthotist today.  He's been having some problems with his current AFOs.  His current ankle/foot braces are an smo/afo combo (a smaller ankle height brace that can be worn alone or snapped into the bigger calf height brace)  The afos are supposed to keep him from being able to walk on his toes but that hasn't been the case.  Everytime I take his shoes off I notice that he's pulled out of the smos and his heel is getting caught.  I couldn't figure out what was going on for a while, I just knew he cried and fussed until I took them off.  The orthotist was able to add some extra padding in his current afos to fix to the problem but recasted Asher and said we needed to order a new pair.  I know this sounds silly but I get very picky when I have to choose the design for his afos.  I guess I just feel that if this is something we have to have I want it to be the cutest we can get.  I'll include some pics when we get the new afos.  I'm trying to decide between the skull and crossbones pattern or the space pattern (opinions are welcome), I even called the company and had them email pictures of what the pattern looks like on the actual afos (all the website had was the different patterns).

We got Asher a new Kettler trike yesterday.  We thought it would be great because you can buy a seatbelt and a parent controlled pushbar but I don't think the pushbar is going to let us steer it around as easily as we would like.  This whole search started because Asher hates riding around in his stroller but loves to be outside.  We started looking at smart trikes but they just seem so plasticy and cheap (but not a cheap price tag).  We've started the search all over but have seen a promising schwinn tricycle that may be a good fit.  Hopefully we find something that will work and make walks a little easier.

The Kettler Trike we have

The Schwinn Trike

So Proud!

I really want to acknowledge what a great husband I have.  The past few nights he has taken care of Asher and given him a bath after dinner so I can have some time to myself to decompress.  He did a lot of stretching last night with Asher and it really paid off. (We try to stretch him out twice a day to keep his muscles from getting too tight.)  While I was giving him a snack today he long sat all by himself!

I also wanted to give an update on the whole gait trainer/walker situation.  It looks like we'll most likely be going with a kaye posterior rolling walker for Asher.  It's light weight and he seems to be doing really well with it.  I did ask his physical therapist about the snugseat crocodile but I know it's a little larger and heavier so the kaye may work out better. In the past month he has progressed really quickly with his walking.  At first he struggled in the gait trainer but now he's doing great in the walker.  I'm so proud of him. 

Day to Day

A few people have asked me to explain exactly what Asher's challenges are and what his condition is like currently.  Asher has muscle tightness (spasticity) in his entire body but his right side seems to be the most effected.  For a long time Asher would only belly crawl but now he is able to crawl on hands and knees and is doing a lot of knee walking (I think it makes him feel like a big boy).  Asher is able to cruise along furniture but is not able to stand on his own or walk yet.  Because of the tightness he stands/walks up on his toes and needs to wear ankle/foot braces to correct this and to correct his left foot from rolling in or pronating.  Now that Asher is working on walking in his gait trainer we are also noticing that his is turning his left leg inward at the hip.  We are in the process of trying to correct this and are still trying to decide on the best solution.  Asher primarily uses his left hand to play, eat, and hold his sippy cup but he can use his right hand to some extent.  He can't fully extend his right arm but doesn't ignore that hand/arm altogether which can be the case for some children with cerebral palsy.  He has a hand and elbow splint that we are using to help with these issues.

The overall muscle tightness in Asher's body also affects the muscles used for eating and speech.  Children with cerebral palsy tend to also have difficulties with breath control which can make speaking more difficult and seem more choppy.  Asher is showing progress in both these areas but we still have a ways to go.  Because of the lack of verbal communication we started working on signing with Asher pretty early on.  He does great with his signs and picks them up very quickly.  He has even started to combine his signs. 

Now that I've gotten everyone up to date on Asher's challenges let me tell you a little bit about what a joy he is.  He is a happy almost two year old with a great little personality.  He laughs, cries, throws fits and gets into whatever trouble he can.  He can be mischievous and is very strong willed but is also super sweet.  He's sharp as a tac and is a little ball of constant energy that I struggle to keep up with.  Our days aren't filled with sadness or dread.  This is our normal and even though it can be challenging at times I feel so lucky and blessed to have such a wonderful child.  He fills our home and our hearts with so much love and laughter that  I can't even express it in words.  I can't imagine our lives without him and I feel so grateful that he made it through those touch and go first days in the NICU.

Therapy, Therapy, Therapy

Right now Asher has therapy four days a week.  He has physical therapy twice a week, feeding/speech therapy once a week and education therapy once a week.  In physical therapy we're working on - walking, standing, and squatting to pick up toys.  Education Therapy is all about play.  We look at puzzles, play with toys, read books and all the while incorporate words and speech.  I have to say that I am very happy with all his therapists but this hasn't always been the case. 

We are currently on our third feeding therapist and I feel so lucky that we have finally been connected with such a great therapist who actually knows what she's doing and is familiar with feeding issues in cp children.  She is also an amazing speech therapist.  We had therapy with her today which was probably our fifth session.  She doesn't man-handle Asher or make him uncomfortable but helps by suggesting things to try and by listening to him speak and watching him eat.  After our negative experience with Children's Hospital feeding clinic this has been a welcome change.  The main issues Asher has with feeding are that he doesn't chew on his molars but closer to the front of his mouth, he wants to shove all his food in his mouth at once and will chew on an item for what seems like forever.  Because of the weakness in his muscles he also tires out quickly so it's hard to get him to eat enough quantity.  His weight has been an issue ever since he stopped getting breast milk through a bottle when he was around 13 mos.   

Asher is behind on both his language and speech but luckily it doesn't look like he is cognitively delayed.  Some days can be really frustrating for the both of us.  He knows what he wants and can't express it and I can't understand what he wants.  I am so eager for the day that he can tell me what he needs or wants.  I have had a few people say to me that when he does start speaking/walking I'm going to wonder why I wanted it so badly but let me just say that none of these people have children with cp.  I can't wait for those milestones!