Heart Surgery is booked!

I will talk about it in detail at another time. It is difficult for me to write and I tear up very easily regarding this surgery. I have been dreading this for 7 years and the time has come to close his holes. He has an ASD but actually has 3 holes all in a row. We are hoping to close it in a heart cath lab with the umbrella procedure BUT they Dr.'s are not 100% sure and we will not even know until that very day. So keep us in your thoughts. He is scheduled for July 27th. :( My heart breaks for everything my boy has to endure but he is the toughest kid I have ever seen! Nothing phases him and he always keeps me strong! I love him. That is all I have for now because the tears are already welling up.

Another Surgery

Well Brendan was a trooper yet again. He had surgery last week. He had major hip surgery in December 2007 and they had to remove the hardware. They had to make his original incision longer because he has grown so much BUT it looks great. They removed some excess skin that made the scar very prominent so I think once it heals it will look a little better. Not that it really matters. He can tell people all about his battle scars one day! I bet he could impress a lady one day :). He really understood what was going on this time. He was not happy about going in for surgery. As the nurse was lifting him onto the surgical table he yelled "I don't want surgery!" I was so sad for him. It was the first time I have ever seen him go under and this was #6. I have always had his dad take him. I have dreaded, feared, refused to do it! Well his dad was running late this time and guess who had to get in those gorgeous scrubs they supply. That would be me in a one piece suit that could have fit 4 of me! I was so nervous but had to be strong for my boy. He fought the anesthesia. he didn't want the mask near him. A very smart Dr. suggested bubblegum flavor to help him succumb to the drug and his ears popped right up. Once he got one wiff he calmed down (after trying to lick the mask) and was snoring before his eyes were closed all the way.
I think this was the shortest surgery yet!! The Dr. was greeting us in less than 2 hours! Everything went great and he could go home if he was doing well. That was around 9:15am and we were driving home by Noon!! He was awake and happy after vomitting all over himself once we started driving. We just have to accept that Brendan will vomit after anesthesia whether he has anti nausea or not!! I was just talking to my husband how he was doing good when I see my child touch his throat and say "mom I'm gonna throw up". Well thank goodness his dad had handed me a vomit bin (although extremely small in size) before we left because Brendan almost caught it all! I was impressed. The last time this happened he was holding the vomit bin up and to the left of his head and not a drop made it in. This time most went in! So we pulled over dumped it out and continued on our way while Brendan asked for lunch!
He was chipper and happy and talkative. My mom came to visit and he was so happy. He was talking her ear off and told her she was bringing him out for ice cream and I was staying home. Little did he know I was coming so I could lift him! :) So after a nap on the couch with mom (we had been up since 4am) and some dinner we went out for ice cream. He was tired by this point and didn't eat much but he was happy to be there.
He has been doing geat since. A few days of pain and "mommy don't hurt my booboo" and he was back to his old self. He even seems happier. I am starting to wonder if that hip did bother him. I guess only time will tell but for now I am enjoying my boy. He can not walk or even stand for another 3 weeks and I feel awful he just has to sit on his butt for a month but I guess that is the price you have to pay so his hip can heal and become strong again.
I am anxious to see if his walking improves and if he winces less. I am hoping he gains something out of this one. So 6 down and how many to go? We may never know. I do know I was the least stressed out about this surgery and I have learned to control my anxiety. Maybe I am just saving all of for his heart surgery that is coming up. Two days after his surgery Boston called to schedule his sedated heart cath. I basically said I will have to call you back...my son just had surgery! I am still not ready for that even though I have known it was in his future since he was less than a year old!

Botox...Again!

Brendan had botox injections yesterday. I think this is the 7th time but honostly I have lost count. We used to go to Boston for Botox but recently have became involved with an amazing neurologist here in RI. She is one of the only Dr.'s in our state who administers the botox and she has been extremely helpful over the past year. Brendan was very nervous days prior to his injections. This was the very first time he was anxious about going to the hospital. He is getting older and understands everything. He also listens to EVERYTHING anyone is saying and sometimes I am not mindful of that. He does well once you explain everything to him. I think he was nervous because just 6 months ago he went to the hospital for botox injections, double eye surgery, and an echocardiogram. I am sure he remembers that day!

He is put under anesthesia for the procedure which always has me on pins and needles until he is awake. I think that was his 11th time being under and it NEVER gets any easier. I really need to remember he vomits after anesthesia and not while he is in the hospital....oh no....it has to be on the drive home! Yes he had juice and banana all over himself, his booster seat, and my van. Oh Brendan. He tried to get it into this miniscule bin they gave him to hold. I am pretty sure not even a drop made it in. But what can you do. My husband cleaned the car while I cleaned Brendan, his booster, and winter jacket. :)

He was out of it for a few hours and all he wanted to do was eat! He snapped out of it after a popsicle and then ate all of his soup. He was back to himself 3 hours after he woke up so that was nice. He is very loose which is always strange. I can swing him around my hip with ease to carry him around. He also had some injections in his right arm and pecs which makes getting a shirt on and off a breeze! Too bad they didn't stay like that forever but I'll take it. We can work on range of motion and building muscle mass and more control over the next few months. He seems to always improve!

Thankfully for us Botox works for Brendan. We just don't know how much longer it will. He is a troooper as he always is and he keeps on going day by day wihout ever asking WHY? He just doesn't know yet that not every child goes through what he goes through and I will keep it that way for as long as I can.

I always wonder how much more I can endure. I will never know that answer I assume. He needs hip surgery to remove some screws in the very near future and then he will need a sedated heart cath which will reveal what needs to be done to close those stubborn holes in his heart. I may know how much I can handle if they tell me my boy will require open heart surgery. I may need a therapist at that point! But for now I will keep my head high and try and keep those tears away because we made it through another stressful day.

SDR update

Well after a few new Dr. appointments we have been told that SDR is not for Brendan. A specialist in MA feels that once we take away all of Brendan's tone he will actually regress and not progress. Some children with CP rely on their tone to be mobile. Brendan happens to be one of those children which is very unfortunate. I guess it is somewhat bittersweet because SDR is not something I wanted to put my child through and wasn't even sure if I was mentally strong enough to actually go through with it but in the end it seemed like it would make Brendan's future easier and less painful.

We still haven't given up completely. We can still fly to St. Louis and listen to what Dr. Park has to say regarding the surgery. We are also going to try a baclofen pump trial to see how Brendan's body would really act without having any tone. The procedure is a spinal tap and risks are involved but at least we will have a better sense at what SDR would do to his body.

Unfortunately we have to wait a while before trying the pump trial. Brendan only weighs 39 lbs which is on the small side. He also has 2 surgeries coming up. He needs to have screws removed from his hip that have been in since his right hip osteotomy in December 2007. He risks infection since they have to take them out of his bone. He also needs to have the 3 holes in his heart closed. He will be having a sedated heart cath in July which will determine if my little boy needs open heart surgery or if his tissue can handle a MUCH less evasive and simpler procedure to close the holes. Obviously his little body can only handle so much in a year so we have to make those two surgeries priority. He tends to lose weight after surgery as well so he will be even smaller. He dropped to 27lbs after his hip surgery.

So many decisions all the time for my little man. I haven't even gotten to his cortical visual impairment update but that will have to be another day.

I will try and post new pictures soon. He is getting tall and very hard for me to lift as I am only 5'1"!! I am fortunate that he doesn't weigh very much yet!! :)

January 2010

WOW it is 2010. It looks strange, it sounds strange. I can't believe how fast time is going by. Brendan is 7 years old. He is constantly telling me "mommy I'm so big, I'm not little anymore, right?" He loves getting big. He has been doing very well lately. He is always progressing in his speech. He is talking in fairly clear sentences. He is correcting his own words that sound a bit off. He can say the sound F for the first time this past week. It is very exciting. He still needs a reminder but if you ask him to say a word that starts with f...he can!!! It brings tears to my eyes. He has come so far. At the age of 2 he said one word, bye. That is because he loved when therapists and doctors were done and he would shout BYE!!! I am pretty sure (my memory is fading) that he didn't say much more until the age of 4. He could say a few words here and there but not much so to think at age 7 he would be speaking (fairly clear) full sentences is truley amazing. I am thankful he is always progressing in all areas.

He is getting stronger and stronger as the years go by and he loves it! He now asks to put the forks on the table for dinner so I hand him 5 forks and while in his walker, he holds onto those 5 forks and walks to the table and puts a fork at each place. As I see him struggle to walk around each chair and get that fork onto the table he has the biggest smile plastered on his face. You can tell he is so proud of himself. He likes to 'help' make dinner and lunches. Now his helping is constantly wheeling over my toes in that walker or eating everything we take out for lunches but he loves it and it makes him feel big. He can now open the dishwasher and fridge doors in his walker without falling onto the floor. He can flip on and off light switches without struggling. This only too a few weeks to master. I don't even get nervous he will crash to the floor anymore. He is getting confident and strong and I love it!!!

I just can't believe he is 7. That just sounds so old. I think of the past 7 years and how difficult some days have been, how much he has been through, how much he has endured, and of course how much he has progressed. He is always such a trooper. He is a fighter and he gets through every procedure and surgery without much setback. He is the type of child who flirts with all the nurses in his scrubs and is smiling and walking around in his walker thinking he owns the place until he is put under. He is amazing!!

SDR Selective Dorsal Rhizotomy and my suddenly dare devil son!!

Well it is time to focus on our decision again for Brendan having SDR. The results are amazing. I need to figure out how to post some video clips of children who have had SDR. The surgery seems like a miracle. I realize it will take years and a ton of therapy to see the results we are hoping for but the results that can be obtained are almost unimagineable. I keep having dreams of Brendan standing up and walking on his own. I love those dreams. I have never seen my child stand up tall. I don't even know what he would look like without being hunched over with his knees bent. I hope one day I can see this vision with my own eyes! I have never been able to get a true height on him because the Dr.'s don't lay him down and measure him like an infant anymore. We just guess. I know he is getting very tall because at my wopping 5'1" frame he is getting very difficult to carry. He stands right below my chest when I hold him up and that isn't even standing tall. They grow so fast!

He is becoming a very daring little boy lately. He actually fell off the couch and out of his walker twice this weekend. I think his vision has improved since his strabismus surgery this past August. He has found the light switches in our house and he seems to be much more aware of his surroundings all of the sudden, in turn creating my dare devil son.

He has never been able to lift one arm off his walker and now he is doing this and turning on and off a light switch. AMAZING! He is also enjoying opening and closing the dishwasher. Well this is how he fell out of his walker not once but twice! The first time I cought him but I wasn't fast enough the second time. He has no balance and once his mind has any sort of emotion his arms tighten up especially at the elbow. He has absolutely no reflexes so his arms never protect him against a fall which often means his head is what hits first. :( Luckily his back hit the wheel on his walker first and then his head lightly bumped the ground as he slipped out of my arms. BUT I am happy that he is getting out of his comfort zone and actually trying to do these things. I am also happy that he has gained some muscle mass to be able to do this things. Holding himself up in that walker with one arm is a massive feat!! I am so proud of him but I envision many more bumps and bruises down the road. He is a mad man in his walker. He has no fear. He will yank it over bumps and curbs and anything in his way without realizing that it may tip over with him in it. This has also happened and is not a pleasant site to see! BUT he is a boy and that is what boys do and how happy do you think it makes me to be able to say something like that!

One Dollar at a time

You may have noticed that I have added a donate button to Brendan's blog. We are asking those who are interested in helping Brendan walk donate a dollar. These dollars are only going towards Brendan's future surgery which requires money for plane tickets out to St. Louis, surgery costs, future therapy costs, and any future equipment needed for him to ambulate. I have set up a paypal account in his name and he has his own email. Helpbrendanwalk@gmail.com
Having disabled child requires money you would never imagine spending. His father and I have spent $1,000's just on new walkers for him. He needs special sneakers to fit over his leg braces that cost $65 each which he now wears a hole through in his toes just in a few months. We are lucky to have great insurance that covers most other expenses but these added expenses add up very quickly.
So on top of these we need to get Brendan to St. Louis!!! He needs to get evaluated by Dr. Park one last time and I need to be by his side taking diligent notes. Today's plane tickets cost $828 round trip for just Brendan and I to fly to St. Louis. We also need a place to stay for one night and probably a rental car. So as you can see those expenses are unaffordable for us right now. Obviously I will go into debt if need be for my son's future but a little help would be greatly appreciated.
We will need to fly to St. Louis at least 3 times over the next couple of years.
This is why I am asking for a little help. Something I NEVER do. I want to be able to make this surgery a possibility for Brendan. He deserves it.
Thank you in advance to anyone who decides to donate their dollar!!! :)