Baby Steps...

Asher had an awesome day in therapy!  He stood all by himself for about three minutes and took nine steps all by himself.  He only went a couple of feet but it was so exciting to see and such a big achievement!  He was also able to squat down a couple of times and stand back up without falling.  His therapist and I were both so excited and I couldn't wait to call Mark and tell him all about it.  He hated that he missed it and that we didn't get it on video but we are going to see if we can record Asher in action this evening.  That is the thing with therapy and cerebral palsy in general.  Some days are really great and Asher is just in a groove and other times he may be having an off day.  I know we're all like that but it is definitely amplified in toddlers and especially in toddlers with cp.  Some days he is just so tight and I can't understand why.  His spacticity can get worse from a fever, the weather, or even if he's just tired or fussy.   I know Asher still has a long way to go but he is doing really well.

Mark ordered some knee pads yesterday ( http://www.babykneez.ca/) to see if it will help Asher's little knees from getting so red and calloused from crawling around all day.  It isn't really a problem inside but we have noticed that his little knees are getting sore from crawling outside and with it being shorts weather we thought it may help.  They're coming from Canada so it may take a while for them to get there but we did some research and they seem to be the best option out there for this purpose.  I'll write how it goes after we use them for a little while.

We also went strawberry picking this weekend and Asher did really well.  I was worried how it would go but I guess I worried for nothing.  It has been a little challenging lately taking Asher out because he hates being in the stroller or cart but we don't feel comfortable letting him crawl around just anywhere.  He had plenty of room to crawl in the rows of strawberries and had a ball squishing them in his hands and making a complete mess.  He was covered in pink goo in no time flat.  He also went in the moon bounce at the farm.  I was worried he would be scared with all the other kids bouncing around him but he was laughing hysterically.  He thought it was the best thing ever.  I had Parker go in and stay right with Asher so he didn't get jumped on and I have to say that I feel so lucky that Asher has such a great big brother to look out for him.  Parker picked Asher up and jumped him all around the moon bounce.  It was really cute to see my two boys bouncing and laughing together. 

family pic in the strawberry field

Parker and Asher in the moon bounce

Parker's finger is looking better now if I could just get him to do all his finger/hand exercises.  The orthopedic hand specialist said that it looks like Parker cut a tendon in his finger that has healed nicely but the subsequent scar tissue has built up around his knuckle making it unable for Parker to bend his finger and causing the finger to look crooked.  He is supposed to do special finger/hand exercises three times a day and follow up with specialist. We met with a special hand therapist who showed him what exercised to do.  I think if he is diligent and does his therapy it will be better before long.

Busy Week

I took Asher for his second round of botox this past week and I have to say that it has been the hardest appointment in a while.  It's tough having your child not understand why you're holding them down while someone is repeatedly sticking them with a needle.  It goes against every instinct you have as a parent.  Asher just screamed and cried and kept saying mama.  It was really tough but I just have to be strong and remember that I'm doing these things to help him. 

We also went back to the urologist for a post-op exam on Thursday and his doctor said everything is looking great.  I like his doctor a lot but hopefully that will be the last time we see him.

On a different note; I took my twelve year old son, Parker, to see the doctor this week as well.  He cut his finger a while back and it doesn't seem to be healing correctly.  It's healing crooked and he can't seem to bend it very far.  His doctor is concerned that he may have cut a tendon so we have an appointment with a hand specialist this coming week.  My two boys definitely keep me on my toes but I feel so lucky to have such great children. 

My mom and two nieces Iliana and Raevien were in town this weekend for a visit.  They are both so sweet and got along great with Parker and Asher.  We took Asher on a walk outside and got a chance to see what a dare devil he is. He kept wanting to go down a hill near our house as fast as he could with his walker.  He had a giant smile on his face the entire time.  It was so great to see him feeling so care free and enjoying himself.  We also went to Chuck E Cheese to celebrate Iliana's birthday and had a great time.  We did find it challenging for Asher to get around with all the commotion and kids running around.  He had a blast riding some of the toddler "rides" but using his walker isn't an option at places like this and neither is crawling. We're positive that soon enough he'll be up and running around with the other kids.


Asher walking like such a big boy

Raevien, Parker & Iliana



New AFO's

It had been really hard to get back to our normal routine but I know that it's important for Asher and it has also been a welcome distraction.  I took Asher to get his new afo's on Wednesday and they are super cute.  The skull and crossbones ended up being a great choice, even the orthotist was impressed by how nice they turned out.  Asher also got fitted for his derotation straps which were made while we waited.  Both the afo's and derotation straps have really been helping.  The afo's are a great fit and the derotation straps have corrected the problem of his left leg turning in at the hip.  He was so cute walking up and down the hall of the orthotist's office in his walker.  He looked great.  I even had him walk through the waiting area and out the front door.  I didn't think we would ever get out of the office.  Every few steps he would turn his head and say bye-bye to the receptionists at the front desk.  They would laugh and tell him how cute he was and he just kept on hamming it up.  He is going to be quite the little flirt.


new afos and shoes



derotation straps

Both times I have gone to the orthotist to get Asher's braces they have also provided a pair of shoes that will accomodate his braces.  The last shoes he got were black and reminded me a little of shape-ups but they look like designer kicks compared to the pair I got on Wednesday.  Mark and I had a good laugh but we can't understand why shoe makers can't understand that these kids already have enough things that make them feel different, their shoes don't need to be one of them. 

  

We were supposed to go in for Botox on Tuesday but I postponed the appointment until next week.  Asher had a cold which turned into a double ear infection so I thought it would be a good idea to get over all of that first.  I have to say that Asher has been such a little trooper since his surgery and that whole thing went very smoothly.  I'm just keeping my fingers crossed that he won't need it repeated later on.

Asher & his friend Savannah



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