Wednesday, October 12, 2011

It's Been A While

I know it has been quite a while since I last updated this blog but we'll just say Asher, myself and the blog were all on summer vacation.  Having Parker at home all summer and trying to get out of the house and enjoy the weather didn't make for the best blogging.  We had a nice family vacation this summer. Asher loved going to the beach.  I was afraid he wouldn't like the waves but he couldn't get enough.  He kept crawling after them and I had to keep dragging him back up the beach.  
I took advantage of the nice weather and tried to take his walker everywhere we went.  He has gotten to be such a pro at turning and steering it all over the place.  He loves to run in it.  I can't believe how quickly he's gotten the hang of it.  His independent walking has not progressed and has actually regressed.  We are taking him to Children's Hospital tomorrow so that he can get botox and phenol in both his legs.  It is being done in the OR and he will be put under general anesthesia for the procedure.  The doctors are hoping the effects will be more dramatic and last longer.  We're also hoping it won't be as traumatizing if he's put under for the procedure.  Our next step in this whole process is going to be a selective dorsal rhizotomy, which involves cutting some of the sensory nerve fibers that come from the muscles and enter the spinal cord.   His physiatrist informed me that Asher is a candidate for the procedure and he can have it anytime between the ages of 2 and 6.  The main thing we need to make sure of is that he can withstand the six months of 5 days a week intense physical therapy.  It's a very invasive procedure and we have made an appointment to thoughrouly discuss it in February.  Asher is also talking up a storm.  He's even using four and more word sentences.  There has been such an explosion in his language and cognitive abilites.  He still seems a little behind to me but according to his evaluations he is right where he should be.  He amazes me all the time and I can't even put into words how proud of him his dad and I both are. 

On a lighter note, Asher is completely truck obsessed!! He could talk about trucks all day if you let him.  Believe it or not we were able to pass down Parker's old power wheel to him.  We gave it to him for the first time this past weekend and he was in heaven.  He was able to get the hang of pushing the pedal, which we were worried about because the pedal is on the right side, but he hasn't gotten the hang of steering yet.  I have to stay right with him and keep turning the wheel so he doesn't end up in a ditch.  He could sit in that power wheel forever if we let him.  For some reason I love that it has been used by both my boys. 

Speaking of both my boys, a good friend of mine who is a professional photographer did beautiful pictures of the boys a couple weekends ago.  They turned out really amazing.  I felt like I had run a marathon at the end of the session, it was a lot of work to get Asher to smile and look at the camera, but it was worth it.  I was worried that my friend wouldn't be able to get any good shots because of Asher not cooperating but she got so many that it's hard to choose which ones to frame. Thanks Amanda!!!/AmandaMoorePhotographyLLC

Thursday, July 21, 2011

Mom Prom

I want to start off by sending a big "Thank You" out to Amanda & Alison for putting on a great Mom Prom and for making the first year so successful.  These two wonderful ladies had heard of other states putting on Mom Prom's and donating the money raised to worthy causes.  They spent a lot of time and energy to throw an event in our area and wanted the money raised to go to a wonderful organization called Reaching for the Stars - an organization committed to making a difference in the lives of children with cerebral palsy.  It really means a lot to me that I have such amazing and supportive friends who support not only the challenges that Asher & our family is dealing with but also the cerebral palsy community as a whole.  The prom was so much fun! It was great to get to wear a prom dress again and dance all night.  The event raised over $1,100!  Thank you to everyone that came to the event and donated to a great cause.  I can hardly wait until next year's prom.    

Monday, June 13, 2011

Happy Second Birthday

I can't believe you are two years old.  It seems like just yesterday that I was looking at you in your little isolette in the NICU and wondering what your future would be like or if you would ever be able to walk or talk and look at how far you have come.  You are constantly talking and cruising around in your walker and even taking a few steps all on your own.  You're Dad and I are so proud of you and also want you to know how much we love you.  We know that so far your life hasn't been that of a typical two year old, with seemingly endless doctor's appointments and therapy but you have such a sweet spirit and you fill our hearts with so much love.  We are better people because of you and all that these trials have taught us.  We will never be able to teach you all that you have taught us in this short amount of time  We know that this next year will be filled with even more accomplishments and we feel so lucky to be apart of them with you.  You are and will always be my sunshine.

Sunday, June 12, 2011

One Step Forward ...Two Steps Back

It's been a while since I updated and there's a lot to catch up on.  First off, all the progress Asher made walking came to a screeching halt the first time he realized that he could fall and that falling wasn't going to feel too good.  He became so nervous about falling that he would scream as soon as I took my hands off him and bend his knees to sit down.  Teaching an older child to walk is apparently nothing like when a 11 or 12 month old starts walking and has no fear.  Asher is aware that he can fall and he's fearful of it.  It's also harder for him to catch himself when he starts to fall because his muscles are so tight.  His therapist and I have just been taking it slow and only doing what he's comfortable with.  She has assured me that this is just a phase and that Asher will work through it.  It's just so hard to see him taking a step backwards.

I finally got the baby kneez and they have been awesome so far.  My only complaint is that because of the almost sweater knit material they're made of everything gets stuck on the fabric.  The only place this has been a problem is when he's crawling around on the grass.  On the positive side they do seem to stay in place and they're actually pretty cute.

Asher has been talking up a storm lately and he's even been doing some three and four word combinations.  He's speech therapist told me today how amazed she is at his progress.  The main thing we need to work on now is his articulation.  He isn't putting ending on some of his words so they seem to run together.  He also seems to be struggling with his long "o" sound.

I feel so fortunate that Asher is continually progressing and I have to say that even though his therapists and I put in a lot of work to help him get there he really is the star.  He works so hard and has such determination.  I have such a soft spot for not only the other parents out there going through this journey but especially for these sweet innocent children that don't know any other way of life.

Thursday, May 5, 2011

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 ( 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.

Sunday, April 17, 2011

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

Tuesday, April 12, 2011

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