Happy Birthday My Sweet Boy!

Brendan turned 8 a few days ago. It is so hard to believe that he is 8. He has come so far over the years. When I think back to when he was a few months old and were realizing something was wrong I could never envision my son as he is today. He was basically blind, he never stopped crying, and he had a very hard time sucking on a bottle. Now he can see my face and recognize me, he is a happy child with so much to say and he can eat a pound of turkey if you let him!

He is very excited to be 8 and be a big boy. Apparently 8 is so much bigger than 7. He loved celebrating his Birthday. He gets the biggest grin on his face when you sing to him. He was able to see his cousin who came for a visit from the Army and I don't think that child could have smiled any larger when he saw him. It was the cutest thing I have ever seen. He received a power wheels jeep for his birthday. He wanted a go cart but we didn't think the neighbors were going to appreciate that so power wheels it was. Well Brendan calls it a go cart and absolutely loves it. He just drives around with this ginormous smile and that is what life is all about..happiness!

I had a dream last night Brendan got himself out of his walker and ran across the gym. I love and hate those dreams. I love them because I get to see my child walk or run but I hate when I wake up and realize that it didn't happen. Often times in these dreams I dream that I wake up and it was real so it is very confusing when I really do wake up. They always feel so real. I am very happy my boy can get around in a walker but I just want to see him stand up straight for once without him having to hold onto anything. I want to back up and just look at my boy and see how tall he is and what he looks like without all that equipment around him. Maybe one day.

For now I am happy for everything that he can do because it is impossible to predict and envision what your disabled child will be able to do and what they will overcome. Brendan has overcome a ton already and he is only 8. I am looking forward to see what the next 8 years will bring!

Casts off today, ADHD meds, and a Birthday is coming up!

Well we made it again...another 3 weeks and 2 days in casts. He was a trooper. He hardly ever complained. It was almost like he wasn't even wearing them. He is happy about them coming off today!
Not too much to update. His speech is really coming along lately. He is talking in full, complete sentences and using new words daily. He is pronunciating many words correctly now. I can tell more and more people are understand more of what he says. His sister answered him in the car yesterday and I was surprised she knew what he had said. I guess she could be used to his speech as well but usually she is like WHAT BREN??.

His ADHD meds have been helping and I have been getting positive remarks from his teacher and therapists. He is actually working hard in school!! I think he is excited to be able to concentrate more and get the positive feedback.

Only 17 days until Brendan turns 8! It is very hard to believe he is going to be 8. I think I say that every year! :) He is very very excited about his birthday and he just says he wants presents so he is not very helpful with gift ideas. He is loving his geo trax train and pixar cars can ride the tracks too so I got him mater. He already has two others but it is one of the only toys he plays with. He wants to make his own cake this year. I will have to let him because he has been asking for months. I will make one as well but I have to let him try to make one all on his own. He will enjoy it!

Botox, CoCO Keys, Serial Casts, and a new Wheelchair!! OH MY

Well the fun never stops in our house! Brendan had another round of botox treatments done last week. He was a trooper as always but was very nervous this time. He didn't want to be put to sleep and he was crying but the Dr. calmed him down and side tracked him with some bubble gum scented anesthesia..yum! I had to leave my boy under someone else's care as I often have to do and wait. I am very used to waiting at this point! It always takes longer than you would expect but they called and everything went great! He did not want to wake up BUT I think that was a good thing because I just sat next to him while he slept it off for the next 2 hours and he was NOT cranky when he woke up AND HE NEVER THREW UP!!! This is the first time in years I can remember him not throwing up after anesthesia. I think we were both happy about that!
The following weekend we took the kids to CoCo Key Water Resort for some fun! The kids had a great time but let me tell you that my 44lb boy is not light! We like him to be able to do the same as the other kids so we carried him up 4 flights of stairs along with inner tubes to go down the water slides. HE LOVED IT!!! He was so excited because he had to go down all on his own. Every single time he came out the bottom he would say " I did it all by myself". He was so proud of himself. He didn't fall out once and would just sit in his tube at the bottom and wait for someone to help him get out. It was a process but so worth it!! He loves doing things every other kid does!
Only 2 days later it was time for serial casts. He was nervous going in and wasn't thrilled about being casted but a pretty girl named April starte talking to him and that just turned his whole personality around and he was amazing through the entire casting process which takes over an hour. He also got fitted for his new wheelchair that day. I have never seen a child more happy about getting a wheelchair which sure does help my sprit. I never wanted to order another wheelchair for him but the day came where I knew we had to. :( He got to pick the color and blue it is! He is not too bad at wheeling it around considering his right arm and hand are much worse off. It is hard for him to go straight but if you just leave him in a room he is able to manuever all around and he always has a great big grin on his face! I love seeing him happy. He always has to go through so much in his life and he always handles it with ease. He makes everything easier on me just being him! Love ya buddy!!!! I will post pictures soon!

Brendan started a new school

Well my son always amazes me and he has done so yet again. He transitioned perfectly. He was so excited to go to a new school and start first grade. He was all smiles as you can see from the picture. He did not cry, whine, or have any anxiety. His father and I brought him for his first day because the school was not exactly ready or prepared for these students just days before school started. That could be a whole other post!! He just wanted a hug and off he went with a new PT down the hall to use the restroom. I am so proud of him.

He had a fun but difficult summer. He had hip surgery and a heart procedure and yet he takes everything in stride and still exubes happiness and joy. He has made a friend already, Evan. He loves Evan. Evan is wheelchair bound and doesn't speak but Brendan took to him instantly. He wants to stand in his stander next to Evan, sit next to Evan and he is constantly watching out for him. Sometimes Evan's head falls down and Brendan yells to his teacher's "Fix Evans head!!". He is the sweetest little boy. I think he will make a good husband one day...watch out ladies!! :)

I wish we had a break from procedures but that never happens..Botox is on for the 5th of October, I am scheduling for him to see a new professional to assess his vision in Boston, and trying to figure out how to get him assessed for a rather new lasor treatment for tissue release. There is alway something to do and research and debate on doing but I will continue to do everything I can for my little boy. He deserves that and so much more.

Brendan's ASD is CLOSED!!! :)

The days prior to this surgery were brutal. I was so nervous and really feared it not working. I was so prepared for them to tell me it did not work and he would need open heart surgery BUT that didn't happen. Boston Children's is an amazing hospital and everyone has great bedside manner. I am not really used to that. I received a phone call one hour into the heart cath and my heart dropped. The only downfall of this hospital is that your cell phone has NO reception. I was just finishing my lunch since I hadn't eaten all day along with my son so we rushed back upstairs to talk to someone. I thought to myself why would they be calling only one hour in??? It must not have worked. I was on the verge of tears. A few (very long) minutes later I got a call in the waiting room and the nurse just called to tell me everything was fine and Brendan was doing great and they were about to try and close his ASD. UM you call?? I don't think I have ever received a phone call with an update and definitely not one hour in. That was very nice even if I had a slight heart attack because of it. :)
Less than an hour later I received another phone call and yes my heart dropped again. It was too early for them to be finished... yet they were! The nurse just said they were all done and the Dr. was coming out to talk to me. My brain instantly went to "OMG it didn't work" so I forced myself to ask the question "was she able to close it?" and I heard those lovely words "YES, it's closed". It is hard to explain that immediate feeling of relief. At first I was a bit shocked. When I first said those words to my husband, who was staring at me trying to listen to my phone call and wondering the same thing, it sunk in. It worked!! We both got teary eyed. Open heart has been on my mind for years and there have been many nights of tears from fear. He has been supportive every single time and now I don't have to shed tears anymore about this. I can move on emotionally. My son doesn't have to endure something so strenuous on his body. I feel so relieved and like a huge weight has been lifted. I really felt lighter that night.
We were told we could see him in about 30 minutes but an hour went by before they called us. His father and I went in first. Brendan had two of his grandmothers, one grandfather, his dad, stepdad and of course myself waiting to see him. As we were walking in we were told they had some trouble with bleeding and had to hold pressure for a while to stop it (which created some nasty bruising on my lil boy) and they had to sedate him to control it. His spasticity causes his knees to bend and his legs to scrunch up which wasn't helping the situation. So he slept medicated for the next 3 hours. We all took turns just sitting with him and letting him sleep. He had to lay still for 7 hours so sleeping for 3 of those was fine with me.
He actually woke up peaceful. He usually wakes up very cranky after any surgery or procedure but not this time which was great since he had to just lay flat and still until 9pm. Everyone left around 6pm and we had a quick visit from my sister around 7 which helped break up the time. He vomited his first popsicle which I knew was coming. It always happens no matter what so this little boy who hadn't been able to eat for 24 hours now had to wait for his belly to wake up. He finally got another popsicle and when that stayed down so he mowed down two packages of oyster crackers, a package of cheez its, gingerale, some apple juice, and finally some chicken parm.

We got to leave the room for some x-rays and then just sat together and talked. We video skyped my husband. We tried playing legos but that didn't work with his IV in his good hand and the whole laying down thing. He really perked up after he ate and was much more himself. He was cute and funny and the nurses all loved him. I was exhausted so we both went to bed at 10:30pm after he had a full belly.

I expected a long night of him talking to me and asking questions but I told him we had to go to sleep and he just did! He is amazing! We both woke up alot during the night due to the nurses coming in but I stayed out of it and just listened and he just talked to the nurse and went back to sleep. (still in shock about this!) He asked them questions and handled this whole thing like such a big boy. He really amazed me this time. He is so brave.

We were able to leave the hospital at 10 the next morning after the x rays and echo showed that the device stayed in place!!!! He walked all the way from his room to the van in the parking garage which was one long walk for him in his walker. It must have felt good! He had been asking for McDonalds since the day before so that is what he got and he ate everything. We went home and relaxed and played legos.
We had a great week together and just kept it low key. He did end up having a 102 fever for 24 hours but it hovered around 99-100 other than that so we just hoped for the best and yesterday he was fever free. He has to go see his cardiologist here in RI next week and in 3 months and we just have to hope that the device stays in place and everything goes as planned. He should start gaining some weight now that his heart doesn't have to work so hard!!
It is over and it worked and I am so thankful. The prayers worked and my son is truley amazing and he reminds me of this all the time!!

It is almost time. Surgery #6

I can't believe the appointment is so close. It has been a difficult week for me, emotionally. My worst fear is that this heart procedure will not work and I will be told my 7 year old boy needs open heart surgery. This weighs heavily on my mind and I will not know the answer until Tuesday morning. I hope for ONCE this boy's luck goes his way and this actually works!! I know there are still risks. I finally read about it. I couldn't make myself research it until this week. Normally that is all I do is research research research but to keep my sanity I did not do that. I read two articles and that is all. I just have to remember my son comes though everything with flying colors and no complications and I must believe in my own heart that this time will be the same.

I haven't really told Brendan yet. I don't feel he needs the stress. I can see him listening when I talk about it to other adults but I don't really think he knows what is going on. He hasn't asked any questions yet so I will leave it be. I will let him enjoy this weekend of camping and explain Monday while we are completing 6 hours of testing. He is unaware of all of this. He has no idea mommy took off the whole week to be with him and we will being staying overnight in the hosspital IF it works!! So whoever reads my blog think of my son on Tuesday morning and if you pray...pray with all you have that this procedure works for him and they are able to close his holes and this ordeal can be behind all of us! If you want to read about this procedure here it is:
Procedures using catheters

A procedure that uses a catheter to close the ASD with a special closure device (septal occluder) is a recent but increasingly used option. Catheters are thin, flexible tubes used in cardiac catheterization.

The advantages of such procedures are that they:
Don't require the child's chest to be opened
Usually require no more than an overnight stay in hospital
Let the child recover quickly
Closure with a catheter can't be done for every type of ASD. A catheter can be used with secundum defects (that is, those located near the middle of the septum). It can't be used with defects so large that there is not enough surrounding tissue to anchor the device.

The catheter procedure is done under general anesthesia, so your child will sleep through the procedure and not feel any discomfort. During the procedure, the doctor:
Inserts a catheter into a blood vessel in the groin
Threads the catheter to the heart
Measures pressure and oxygen levels for all four heart chambers
Injects dye and takes pictures (angiogram) of the heart
Uses a balloon catheter (under ultrasound guidance) to estimate the size of the ASD
Threads a special fabric-covered wire frame to the heart
Positions half of the device on the left side of the atrial septum
Positions the other half of the device on the right side of the atrial septum
Wedges ASD between the two parts of the device
Within 6 to 8 weeks, normal tissue grows in and over the device. There is no need to replace the closure device as the child grows.

The outlook for children having this procedure is excellent. Closures are successful in more than 9 out of 10 patients, with no significant leakage. Because the device is relatively new, what is not known is whether there are any long-term problems with the device compared to surgery.

(while googling a link a youtube video popped up for an ASD closure. I think I am all set watching that one!!! Sometimes there is a bit too much information out there for my eyes to see.)

Ok Happy Post :)

My husband and I bought bike trailers so we can start excercising. It is difficult to have time for yourself with 3 kids. We are always together as a family when not working so this idea was perfect!! Derek pulls the girls and I pull Brendan. I am so proud of myself because I wasn't sure I could pull my 45 lb. boy up hills but I did it. I never walked, not even once. We rode 2 1/2 miles to my sister in laws and then took the kids swimming for a few hours and then rode back home. It was such a great day. The kids had so much fun and we got some exercise.

Brendan LOVES any kind of movement since he is so limited in life. He loves go carts, bumper cars, roller coasters...you name it. He is already asking when the next bike ride will be. He was cracking up when we rode down a big hill. He was yelling out "go faster, car mommy, and take a right!". He was so funny. I love seeing him smile. I love seeing him enjoy life and I love figuring out things we can still do as a family while having a disabled child. Life is good.

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!!