We're home....

Sorry it has taken so long, but with getting settled home again and helping Andrew get around has been a lot of work.

We got home all in one piece after a really long drive. Andrew was pretty uncomfortable in his car seat and didn't want to take his meds. We ended up stopping at a drug store frantically looking for something to mix his meds with. We came across some liquid candy, but not paying attention, it was sour apple.... Big mistake. It was horrible!!! We just did everything possible to make him comfortable with pillows and blankets. We made many stops on the way home to get out, stretch and try to rest.

As soon as we got home, Andrew got busy cruising around the house. Although he was walking before surgery, he now has to learn to walk all over again. He's crawling as his main means of travel or by holding someone's hand. We've sold all the toddler push toys we had, so he needs lots of help getting around. He still gets stiff here and there, but has made an amazing improvement since the time we left the hospital. We are shocked at how fast he is bouncing back.

He started his therapy again here at home on Tuesday and was motivated to work hard. Although the therapy program he is getting may not be the best for him at this point since we are doing all the same things at home. This is his fill in therapist. He will be back on with his regular therapist SOON!! So we talked about the alternate therapist doing cranio sacral therapy or Mayofascial release therapy instead since he will be getting the more intense physical therapy from his regular therapist and at home. We're thankful it is summertime since he is much more active outdoors.

He even climbed his climbing wall on his jungle gym playset and went down the slide by himself. All he needed was a little guidance on where to put his feet since he was OVER correcting on lifitng his legs. Before he would struggle to get his foot to the next step on the climbing wall. Now he over steps and misses. It will take some time for him to get used to his new flexibilty.

Andrew made his first trip to the McDonald's playplace today! I was a little nervous about the strength it would take him to climb to the top to be able to come down the slide, but surprisingly he went right up the platform, through the tunnels and down the slide, all by himself!!! It took him a bit longer to pull himself up onto each platform level, but he did it by himself. Needless to say he was a bit tired and wanted to go home and take a nap after.

His new favorite movie is the Fantastic 4.... He loves to pretend he is "The Rock Guy" as he calls him. He pretends he is him and showed me today how he can jump. He was holding onto the couch and had his feet on a bean bag chair. He then started hopping up and down with BOTH legs at the SAME time. Before the SDR surgery, he could only lift one leg at a time and his left leg rarely cleared the floor. Today, both legs completely cleared the floor and were together the whole time. he was so proud of himself.

He's finally getting the hang of the idea that he can place his feet flat now. He needs lots of reminders and a lot of confidence building that he can do things on his own. He seems a bit apprehensive about letting go out of the fear of falling. The other day he fell on his behind and said it hurt his back... so he is a bit afraid of falling.

At therapy today he worked on side stepping which he could barely do before, now he can side step holding hands with minimal straining. He also worked on going from sit to stand, squat to stand and high kneeling and half kneeling. He did really well and desereved the trip to McDonalds. He still fatigues pretty quickly and after resting has some stiffness in his back and slight pain... but after he gets up and moving he is just fine. We've been getting by with tylenol here and there for the pain. He still tells me that his ankles and legs feel like there is bugs in them, he says. So he is still having some muscle spasms which seem to be subsiding. If we just ignore it or do some deep pressure massage, and change the subject he seems to be just fine.

But, it is late and time to get some rest.... Another therapy filled day before the weekend.

I'm in the process of posting some more photos, so check back tomorrow possibly... if I can fit it in the day

We are off....

Andrew is being released today from the hospital. He is so excited to go home! and so are we. He had a GREAT therapy session yesterday afternoon and this morining. Yesterday the therapist got him up into a standing position. We have many photos and videos to post and as soon as we can, we will.

Today at therapy, it was an hour and a half session before we left and he did AWESOME!!! He was crawling all over the place with limited pain and was doing unbelievable behind a push cart walking by himself with minimal assistance. The PT basically only had to hold his hips into position! We are going to be on the road all day and night so we will update again when we get home.

Love to everyone!

He's up and moving!!!!

Andrew had a great afternoon yesterday. They started his in bed therapy yesterday, basically just showing us how to position him more comfortably. Then in the later afternoon they showed us how to transfer him to his wheelchair so that we could finally take him out of his room! AHHH freedom. He's off all pain meds through IV and is completely disconected from all IVs and monitors. He is taking the occasional tylenol w/codene for pain and had his Valum last night before bed to prevent the nighttime muscle spasms.

This morning he was able to get out of bed to go to the Therapy Gym, which is unbelievable! He was not very cooperative after the first half hour, but he was able to get into crawling position on his own and was able to bear some weight on his legs.

Two funny comments from Andrew.... Yesterday while I was helping him to get dressed, while rubbing his thighs he said "Mommy, my legs are soft" and I said "Well yes, that's the whole idea behind all this" and he said "well I want them hard again".... That's how much of a difference there is that quickly... there is no longer any tightness in his hamstrings and he is able to place his feet flat by himself.

This morning as I was helping him to roll over he was wimpering and the nurse asked him where it hurt and he said, "Well, I don't think my legs are supposed to move like that, something is wrong!" LOL... Since he has no more tightness, he thinks his legs are not working right! He keeps saying, "My legs are broken mommy".

So, the doctors were right on how quick you would see a difference!

Anyway, he is in therapy now, and the family resource room is closing, so I will try to update more tonight at the hotel.

Thank you all for thinking of us and praying for us.

:) xoxoxo

June 21st...

So Andrew had a great night last night. They weaned him off his Phentinol (sp?) for pain. He is now only taking tylenol and Valum (Sp?) for the muscle spasms. He seems much more comfortable today than yesterday. It's so hard to believe how fast kids bounce back. He has his urination back and is doing great with that, which is awesome since he could have developed incontinece after surgery! So we are happy with that. He is fighting us every step of the way to get out of bed! He was brought up to the 12th floor neurology unit last night and is much more comfortable there than the PICU. He is able to be inclined to 30 degrees in bed which helps him be a bit more comfortable, but for him it's not enough. He ate many popsicles last night and started breakfast this morning. Daddy asked him if he wanted bacon & eggs, cereal, oatmeal, fruit, or a bagel and he said "Yes"! lol. So they just brought everything and he ate really well! He actually had 2 bowls of cereal before lunch even though we told him lunch was on the way. He ate his soup, pineapples, yogurt and juice and loved it! Matthew was able to come and spend time in his room. They were so cute together, like they had been apart forever! Andrew cried when Grandma wanted to bring Matthew to the rooftop garden. They were having a clown parade and a horticulture therapy event. Matthew got to plant flowers and plants and painted a flower pot for Andrew with a plant in it.

So, Dr. Park came to visit this morning and was VERY pleased with Andrew's movement and motivation to get out of bed. He said most children are in a bit more uncomfortable and usually Andrew is not well with pain... So that sounds good. He will be able to get out of bed in the morning and will start his first Therapy session at 9:30am and again at 1:30pm.

He is much more comfortable today and more alert not being on the pain medicine, but still a bit sleepy. He slept really well last night until 5am when I tried to help him pee and forgot to take the cover off the urinal and soaked him! Poor kid... Dumb Mommy! so we had to get him changed and then he was up for the morning.

Here is a link to some more photos from today on the Kodak Easy share website... if you have trouble let us know. http://www.kodakgallery.com/I.jsp?c=uhdvt31.1ojwlh2d&x=1&y=-cv3qag

We'll post more tomorrow. Hope you are all enjoying this blog. It's so much easier to update from here. If you know anyone that wants it, forward it to them please.

And thank you all again for the "get well wishes" for Andrew. It has really cheered him up!

Sorry for the delay...

I'm sure you are all itching for an update and we're sorry it has taken so long.... but as you can imagine it was a rough day AND night last night. Andrew's surgery was a total of about 5 hours with the anethstesia, positioning and closing of the incision. He was taken in at about 12:30. The doctor called us with an update about an hour later to let us know that they had started. We waited anxiously for another update. They updated us another hour later to let us know that they were done the one side and were ready to start on the other. He was stable the entire time without any problems. They called us at about 4:00 to let us know that he was on his way to recovery. We saw him in recovery while he was still sedated and he looked great! The swelling that they told us to expect in his face from positioning was very minimal. He just looked like he was sleeping. He was transferred to the PICU and has a WONDERFUL team of doctors and nurses. The hospital is AMAZING... these people really love what they do. They are so accomodating and generous around here, except for a few of the off beat patient family members who are very uncoureous and rude, we've had exceptional accomodations.

They were assessing Andrew all night to be sure that he was comfortable and on a good pain regimine. Dr. Park does not like the children to be in any discomfort whatsoever which is a relief! He had a moment after coming out of his anethstesia yesterday but mostly because he wanted to get up and get out of there and go home! He complained of back pain and wanted his IV out, so they kept him a bit more sedated last night. He was running a fever last night which they said is normal for most surgeries, especially on the spinal cord. It's the body's normal reaction. He did well during the night but each time he woke, he wanted to just get out of there. Hours after he was there they assessed his movement which was all right on target. He was definitely able to move well since he was trying to sit up all night and was kicking at the nurses for trying to keep him laying down, so there are no signs of paralysis, no spinal fluid leaks and no pnemonia from the breathing tube... So all is well!

This morning Dr. Park came to see us. He is happy with Andrew's rectivity to stimulation. Andrew is complaining of pain in his legs, but Dr. Park assured us that it is normal and that it is not pain but more of an oversensitivity and muscle spasms. They are giving him meds to control it, but it is all expected. We were told that it will wear of in time.

They are currently in the process of transferring him from the PICU to the 12th floor In-Patient unit. He is doing REALLY well and they feel it is time for him to move. They will start his physical therapy in the morning as soon as he is able to eat and drink. They will take out his IV possibly tonight to see how he does on oral meds. He will be taken off sedation and put on tylenol with Codene for pain... which is what we are told all he will need for pain, but if he does not tolerate the spasms with just that, then they can use alternative medicines to relieve the discomfort.

We will give you another update as soon as possible, but we wanted to let you all know that he is doing just fine. As for us, we are tired... To be expected. Maybe tonight we can get some rest. There is a HUGE cafeteria and a BEAUTIFUL rooftop garden and fountains VERY soothing and relaxing. They have parents lounges with sleeping areas and any amenities that you could imagine. They provide you with everything. You really dont even need to leave the hospital~ Well needed!!

Matthew is being an Angel!! I know, hard to believe, but he is! Grandma, Grandpa & Nana are taking him to run off some steam today... I'm sure he will be ready to burst at any moment. lol.
So anyway, if you visit http://www.stlouischildrens.org/home/giftsgreetings/tabid/74/Default.aspx you can send us messages that the staff will pass along to us and put in Andrew's mailbox. We plan to make a scrapbook of everything, so be sure to drop him a line!

Hopefully we can update tonight.

The photos above are before and after surgery.

Thank you all for your prayers and thoughts of us... they are greatly appreciated!
BTW, I am still working on being able to upload video to you all. These computers are protected from FTP and dont connect fast enough to upload to a storage site. But we'll keep trying.

Thank you all again.

Andrew's Consultation....

Ok, well before we had Andrew's consultation... yesterday we visited the St. Louis Zoo... Which we had a Wonderful time at. Although the weather is quite steamy here, we all enjoyed all the animals. Andrew & Matthew especially enjoyed the Primates area... The apes and gorillas loved them too. One gorilla made it well known that it was HIS territory by thumping his chest and banging the glass where they were kept to let Andrew & Matthew know. They even got to watch a little baby and it's mother give kisses & hugs to each other. Andrew REALLY loved the penguin and puffin area... there were a few that looked like Happy Feet and Andrew said that he can't wait to dance like "Happy Feet"!!!

So we went to Andrew's consultation today and met with a physical therapist first after watching a video slideshow of the surgery. The PT told us that they were downgrading Andrew to wearing "Polywogs" shoe inserts for a while rather than the AFO braces that he has been wearing. They feel that he is using them to lean on when walking & standing. We're hoping the surgery will eliminate the braces altogether. The PT was reassuring that his recovery will be quick since he has great range of motion and strenght and the surgery will only help him to increase that strength over time.

After the PT meeting we met with Dr. Park, the Neurosurgeon... He was very happy to see Andrew and is pretty confident that the surgery will benefit him. He told us that basically all of our hopes for the outcome of the surgery are not too far away. He gave us much needed info about the surgery and recovery which has helped put our minds at ease. He really told us that he would not tell us that he could benefit from the surgery if he was not sure that Andrew WOULD. It will definitely be a long road to get Andrew strengthened but we are prepared for the work. Dr. Park explained to us what to expect during and after the surgery. He told us that the surgery may not FIX his pronated ankles but will reduce his chances of having to have orthopedic surgery. He said there is about a 20% chance that he will have to have the surgery but that it would not be until he is at least 11 or 12 years old. The hip dispasia will hopefully also correct itself over time and therapy. He told us that it is common for children with CP or other kids that walk at a later age, have hip problems with displasia because of the weight that should be upon the hip at an earlier age to help to develop the bone more normally. But over time, Andrew may be just fine in that are as he starts to bear more weight onto his legs post-op.

So, overall, everything is going as planned. We will be at the Hospital with Andrew at 11am. His surgery will be started at 12pm and he is not expected to be out of surgery into the Pediatric ICU until about 4pm. We will keep you all updated when we have time.

Oh and after his appt. today we visited the St. Louis Arch. The boys had a BLAST there. We got to go up inside this monstrous structure in a sort of space ship pod that is inside the arch. Andrew LOVED the ride up... Matthew was not so confident... I think he was picking up on Sean's uneasyness of the height. This thing was huge. We took lots of photos, but we've attached a few to get you started... I am trying to upload the rest to to a webpage. Be back tomorrow.... And thank you all for the Well wishes.

If you would like to send Andrew an email or pics or something you can send it to drewmatt@charter.net That is Andrew & Matthew's email address.

We're Here....

We've arrived all in one piece to St. Louis. We got to our hotel at about 12pm today. It was a pretty uneventful car ride. The boys were great in the car. We stopped in Carmel, Indiana to visit Sean's cousin Linda & Brian and their children. While we were there we went to a splash park where the boys could unwind and splash in the water. It was a refreshing way to cool off in the hot weather and they ran off some energy while we were there. We got to their house at about 2pm and had dinner with them and left at about 8:30 to a hotel. We all got some well needed sleep! We left there and traveled the 2 1/2 hours to the hotel... which is Right in the heart of St. Louis. We got to pass the arch and we are planning on going out to get some dinner as soon as Sandy & Lester get settled in. Their plane arrived ok and we are just waiting for them to get to the hotel.

Here's a pick of Andrew & his friend Brady before we left on Friday, at his end of the year picnic at school. I've also posted a pic of Andrew & Matthew at the splash park. I will post more later tonight. I'm having FTP trouble.

we're leaving tonight...

We are planning on being on the road by 7pm. Wish us luck.

And the video, I could not get it to play within the blog. So you will have to click on the link to get it to play. You also have to have a Quicktime Player to view it. It is a free plug-in that MOST people have anyway. If you have trouble, let us know.

We'll let you know when we get there and what's next.

Here is an attempt to post a video of Andrew from Last December. He was singing a song called "Malti" from Dan Zanes & Friends. Some of you may have seen this already, but we wanted to post a "before" video to see if this will work. So sorry if this doesnt work and we'll try again later. if not here is a link to it
http://webpages.charter.net/thefavilles/andrewsinging1.MOV

Our first post in the progress of Andrew through the Selective Dorsal Rhizotomy Procedure (SDR).

Andrew was born at 29 weeks. 11 weeks premature for no apparent reason. As a result he suffers from Mild Diplegic Cerebral Palsy. He has been in Physical Therapy for almost 3 years and started with Occupational Therapy about 2 1/2 years ago to help with his fine motor delays and Sensory Processing and has been seeing a Speech Therapist for a year. He started preschool last fall and seems to be progressing quite well and seems to enjoy his classmates and teachers. Andrew has a wonderful team of therapists, doctors, teachers and support staff. He has made huge progress since his diagnosis and therapy regimen started. Andrew was delayed in his gross motor skills which prompted a Neurologist to examine him and in turn an MRI was done. The MRI was consistent with the Neurologists diagnosis of Cerebral Palsy. Andrew did not start to walk and take steps until after the age of 2. Since then he has progressed nicely, but not enough for him to be able to climb stairs independently or be able to run, jump and skip as his peers do. He has a difficult time on uneven ground and tires very easily with much walking.

Andrew underwent 2 rounds of botox at Shriner's Hospital. The Botox treatments were like a miracle. But after much research it has been found to be damaging to the muscle tissue since the Botox actually paralyzes the muscles to release the spasticity. Then with having to be casted for 2-3 weeks after each round of injections and the back and forth followups for injections, casting and cast removal.... the Botox only lasts about 3 months. After about of month of appointments surrounding the Botox treatments, he really was only getting 2 good months of "good walking" out of it. Since Botox is only temporary, we wanted a longer term procedure to help him achieve his goals. The only other options that we could find that would benefit him at this point are a Baclofen Pump or a Heel Cord Release. The pump is not permanent and has many side effects including fatigue, which he does not need! and the Heel Cord Release is actually cutting into muscle that can cause future muscle damage and most likely will have to be repeated. This surgery also would not be done until the age of 8... which is too long to wait for help for him.

So after a year of research we decided to see what the Neurologist thought of the Selective Dorsal Rhizotomy. He thought that Andrew would be a good candidate. So we began the application process with The St. Louis Children's hospital and after review, Dr. Park there thought that Andrew would be an excellent candidate for the surgery. It took us about a year to decide to go through with it. He was accepted for surgery and now we are on our way to St. Louis!

The initial review of Andrew is on June 18th and the Surgery will take place on June 19th.
We will keep you all updated with his progress so check back often. This is the best way we know to keep everyone up to date. We hope to keep a video library of his progress along with pictures and other information.

If you would like to read more information on this procedure, please visit http://www.stlouischildrens.org/tabid/89/itemid/1539/Cerebral-Palsy-Spasticity--Selective-Dorsal-Rhiz.aspx