Phenol Injections

Phenol injections are kind of old school. ( Or so I was recently told) They don't do them in Phoenix. The last batch of Phenol was contaminated and so only small amounts are available when we do botox. Last round of Botox I was not a happy camper and I suck at being a mom so I avoided all surgeries until I couldn't put it off any further.

Phenol works longer, faster and better for Tyler. So we did it. The results are almost immediate. Tyler is also a trooper and was up going as soon as they would let him out of his room. He was discharged 35 minutes after he came back.

They came to find us to do discharge papers and Tyler was out doing just what he always does. He plays ball.



We got back to our Grannie's house and Grannie AND Grandpa were home!! Grandpa had been VERY sick AGAIN and we were so glad he was home. So the boys went and played doctor and hang out with the cool people and left me to my own thoughts of overwhelming proportions.




Grayson won't have a thing to do with his Grandpa in the hospital but at home he won't leave him alone!



We had to wait one day to make sure we were seizure free and so we were close to a children's hospital instead of in the air. And then we left for home!!!



Landing and watching for our dad



The surgery worked and Tyler is as loose as we can get him. Unfortunately his legs are not doing so well. We are looking at a larger and more invasive surgery and my poor heart is not sure it can do it just yet!

But we were glad to be home.

Utah Trip Continued

The amazing El Zaribah Shrine here in Arizona are the ones that take care of the out reach clinic for Shriner's. We LOVE them. We always enjoy the clinic and all the fun stuff they have to offer us and for all the fun stuff that they do while we wait. But the best and most amazing part of ANY Shrine is what they provide for us.

After setting our appointment with the Shriner's Hospital we got our travel plans done by the El Zaribah. Meaning, they make AND PAY for our flight. They fly the patient and one adult. Grayson is free ( but not for long) so we were able to get to Utah at not cost to us. Dallas had to work so it wasn’t a huge deal but we miss him and wish he could go with us next time.

Turns out, Utah got the dates wrong so we had to make changes to our flight dates and they were amazing and we got to stay around for a holiday weekend which made it a little easier to see both grandparents AND get our procedure done.

We flew in on Monday . We were picked up by our Aunt Nicky Poo. We dropped her off at work, took her car and went to McDonald's. Ty played and played and MIGHT have ate a little. Grayson did the same. We picked her up and went to our grandma and grandpa’s Browns. We were happy that we got to stay there and have some extra time with them. And we had awesome beds.

Tuesday was Ty’s procedure. They put him totally out for these because they are almost to the bone and VERY painful. We got there and we were getting prepped to met with everyone. Nicky kept Grayson for me, so it was a great chance for one on one time with Ty. We met with Dr. Gooch. She doesn’t agree that we shouldn’t do phenol. She thinks he responds well, does great and that even if he has dystonia then we deal and get his muscles under control. She begged us to not start clipping yet though.  We agree are with her second opinion a lot.


We were able to convince them to NOT give Tyler Versed. He literally becomes this VIOLENT, VIOLENT, little boy that pulls out IV’s and kicks and basically beats the crap out of everyone, including me!  They agreed and said we could try it without.

I got Ty dressed in his little gown and his little bum was showing. I went into the bathroom and came back out and Ty had disappeared. He started walking around the halls and happened to wander into another persons room. Her name was Breanna. She had been there about 2 weeks. Mind you, the hospital doesn’t have LOTS of people or rooms so Breanna had been feeling pretty down. Her parents were both there. Breanna had to have her spine fused a few years ago and was having complications with them. One had to be taken out and she was losing a little bit of her ability to do the things she wanted.

As I went looking for Tyler I heard a sweet voice saying, “ My name is Tyler Brown. I am seven. I live in Arizona.” I went in to save the poor people from my child. I was met  at the door by Breanna’s mom. Ty climbed up on this girls bed and was laying there with her. The mom burst into tears and the dad just stared. I thought, “ Seriously Tyler you can’t just do whatever you want. Sheesh.” As I was ushering him out, Breanna asked if he could stay until he had to go. I reluctantly agreed.

When I got back from taking him into surgery her room was empty. She was able to go home. We got a little note from her mom.  The note said that Breanna had been really down and had asked for a blessing helping her to understand how she could be OK with losing some abilities. Her dad said that he felt very impressed that she would find the answer, but he told her he didn’t know when or how. Her mom said that as Tyler was walking around talking to them, Breanna saw Tyler as a answer to her prayers. The mom said that Ty was exactly what they all needed and the reason they asked him to stay was because they wanted his little spirit to be with them as long as they could.  When Ty left Breanna got released and she told her mom that if he could be brave and do hard things, she would work super hard to do her best.

The nurse that took care of us said that she had never met a little boy quite like Tyler. I have to admit, neither have we. Ty is one of a kind. When he was small people would stop and say stuff. We always thought that he was cute. I mean COME ON! We made him. When we had Grayson, people still stopped us. But people still stop us about Tyler. He draws in EVERYONE. He is polite, kind and most of all he NEVER complains about his situation. I do. I do a lot, but never a word is uttered from his sweet spirit.

On the way to surgery me and Ty were wheeled by the basketball court on the upper floor of the hospital. ( Yes you read that right... a HUGE play room on the upper floor of the hospital) He was quickly fixated on going to go play basketball. We went into the waiting room and he got a hat and we talked about what was going to happen and how much I loved him. I told him I loved him to the Mystery planet and back. He told me he loved me to the mystery planet and back and that he was going to visit the moon and come back to him so we could go play basketball.

The second he said he loved me to the mystery planet and back I lost it. I  can’t imagine what I would do without this little boy. My sweet baby. The mystery planet is not even far enough away to show him how much I love him. But he was telling me all about the stuff he was going to do on the moon. That him and Chicka were going to have a bubble gum nebulizer and they were going to fly to the moon and get rocks and come back out and play basketball.

Soon they came in and took him from me. My heart broke. I let them have him and I went to breakfast. Nothing tasted good so I headed back to the room. Decided to take a nap and wait for my Super Hero to get out of surgery. Faster than I imagined, he was back. They left the IV in his hand this time so he had to wait to go play basketball. They said that they have only heard about going to play basketball.

After about 20 minutes and a little bit of begging from Tyler, they checked to see if he could get out of his bed and head out to play ball. 20 minutes after surgery and my son, who had stuff done on his legs, is now going to be going out and playing basketball.

We played for a few minutes, then went and got him lunch and then played some more. He butted into several other games in which he quickly won over the hearts of other people. We packed up our stuff to go and Aunt Nicky brought our brother to come get us. We went to her place to let her dog out and to take a small walk around. Then headed up to have a quiet evening with his Grandparents.





Tyler did so great. He is so amazing. He has YET to complain. He tells me that his legs feel all better now. I have watched the bruises go away  but watched the way he is walking and I cringe, but know that it won’t last forever.

The next day, was suppose to be the day I got some stuff done at 2 colleges and didn’t. So we are doing them all from here now. The rest of the week, will be up soon.........

A Trip to Utah

We saw a whole bunch of doctors the last 2 months. We got some changes on the front and a new diagnosis that was a little hard and I felt I needed a second opinion. We had already put into place a time to go to Shriner’s and back to our regular doctor. But in order to do that, we needed to go to Utah.

We saw the newest Rehab doc in the valley. She was highly recommended by our orthotic dude and we needed one closer for baclofen refills. It isn’t really something our pediatrician felt comfortable doing. We had to go in to Phoenix for it.

Total side note: PCH added a whole new part of a hospital. So so so so so nice! And the cafeteria was ROCKING!

The new doc was from Poland and doesn’t really like phenol. She also feels that Ty has a condition called Dystonia. I have done a bit of research and I think he might have it, but I also think there are things that he doesn’t have. I talked to my brother who also thought that maybe it was something that we should get a second opinion about. What I do agree with, is that we need to get his spastic muscles under control.

First plan of action was to spread out his baclofen through out the day. I was NOT happy about this. But we have cut his baclofen down to 40 mg instead of 60 and he is on PILLS!! He swallows them happily which means less gagging and trying to get everything down. It also helps that they seem to work better because we no longer have to crush them. He will also take his asthma medicine in a pill and that pesky smokers cough is almost gone!

Second plan, get the phenol. Come back and get botox. LOTS of botox. Then therapy, therapy, therapy. That is one thing I have truly slacked on is the therapy part of Ty’s care. He has such full days at school that I don’t want to try and take a exhausted dude to therapy and have him not do anything. So summer, we are really trying to find a center for him to go to or a therapy class or even to the foundation for a summer program.

Third, brace this heck out of his feet. This option is a good option but one we have explored before. Which means it hasn’t worked. We have tried and tried and he just can’t get braced to where he has good tone AND isn’t hindered. So we have the option of hindering his current movements or hindering him later in life. Sweet choices. So, I am calling to try and brace him and see what we can do.

4th, at some point he needs a pump. So we will look into it. We aren’t jumping the gun for that one. But we are seriously considering it.

As we went to Utah we got our second opinion. I am glad we did.


Next up... Our trip with surgery/shots and how amazing Tyler is!

Phenol Injections

Geesh, lets just say I am behind and totally out of order. Tough on you!

After our seizure we had some major doubts on continuing with our original plan of a baclofen trial. We made another appointment, talked and scheduled another round of phenol. The trial will still happen just not now and just not sure when.

Phenol this time was not at Shriners. We have always done it at Shriner's but our current insurance is amazing for Tyler so we went with going to a closer hospital and one that I prefer over any other. I was especially thankful that Dallas was going to be there with us. We couldn't find anyone to take Grays so another hand was very nice.

This time instead of doing any versed they listened to us and we did a totally different type of procedure. In fact, it was so much easier that Tyler wanted to walk out and we had VERY limited tears. We only had tears of wanting to be all done.

We went in to be weighed and talk to the doc. She took us down to another room and the anesthesiologist was in there and was not expecting us. But we were there, we took off Ty's socks and shoes and showed her where there was some concerns on his toes and the anesthesiologist told him he was going to wear a mask and Ty cried, got the mask, and I was right there the whole time ( so was Grays and D too!) Ty was quickly out and we left. He had his shots and we went back to get him.

We had a drink for him, we got some crackers and he as his polite self when he told the nurse to please take his owie's off and he was all done.

They ask that you keep them out of school for a day and he spent the afternoon being Tyler. ( The bad and sad Tyler, not the fun happy Tyler) A few days after we went back to PT. We have seen very limited success this time around.

Sleep- Revisited

I am hoping I won't have to knock on wood ( but really it can't get any worse than it already is/has/could be) but we have had a HUGE difference in sleeping since we got Toot's tonsils out. We changed a lot of things at the same time and we don't know exactly what it is that has made any difference.

After getting his tonsils out he slept with me for a week or so. When I was ready for my bed back we just started putting him in there. He did great. He seemed to sleep through the night and stay in his bed. Every now and then he would come in our room but not much.

Some of the things we changed right as he got his tonsils out:

1) We got him a new bed. He had been on his toddler bed. I am not sure if that was just not a good idea or if the mattress just stunk. He slept awesome in our bed once he came in.

2) We got him a bed set that he LOVES. He was in just a nice toddler bed set and then we found a Mickey Mouse bed set. He LOVES it. He helps me make his bed, he has to have his pillow a certain way. We thought it would keep him up but it hasn't.

3) We added white noise. When he was tiny we had a CD playing all night in his room. He still slept kinda blah but he slept OK. We have had a fan going in our room and he sleeps great in there. When he had his tonsils out we had to have a cold humidifier. It has some great white noise. Keeps his room cooler too!

4) We added Baclofen. While I didn't think of this as a big deal, I recently think I have changed my mind. When we went to see my parents last week he slept with me and I didn't give him his baclofen in the meds. He had a really restless sleep and would move all the time. Came home and started it back up and he was out OUT! Last night I forgot to refill it and he was up 2 times last night. He ended up in my bed and when I tucked him in and went to his bed he ended up back in there a few hours later. He tenses his legs the ENTIRE night. It really leaves marks at this point ( on ME) and is really sad for me to see. Tonight- Baclofen!

5) Our routine is a little shorter and still really strict. We do the SAME thing, every night. He says the same thing and he gets in the tub and gets to sing the same song every night. We have tried to push his bed time back but it isn't any help so 8 it is.

6) He got his tonsils out and he got the dose of Phenol. We have found as he gets tighter he sleeps MUCH worse. ( hence #4~) It makes us remember to stretch him a lot. Poor kid. I can't imagine how it feels to have tight muscles ALL the time.

He still gets his sleeping meds and the dose hasn't been changed. He has grown but not by much in the last year. He still doesn't nap in the day and when he does he ends up in our bed for the night.

He goes to sleep saying Mickey Mouse and wakes up asking for Mickey Mouse. We hope the sleeping continues. At least this is tolerable.

Reasons why I like Phenol

As most of you know Tyler gets Phenol injections to help his spastic or tight muscles. We saw a huge change from serial casting and injections to this point. We were " looking forward" to having them done again. Of course, as much as you can look forward to a "surgery" and 2 casts on a 4 year old... RIGHT~

We had made the decision to go ahead and do all of his stuff at once. Our Dr. Rehab decided she wasn't "prepared" ( don't EVEN get me started on "prepared" stuff.) So we didn't get casts. I was TICKED. But now that we are almost a week post op I am kind of glad we didn't.

Of course we MIGHT end up casting him but we MIGHT not and see how things go.

But I wanted to share some of the reasons we like the injections and what they change for Tyler

1. He can lay on his tummy. While this may seem such a small thing, he can't do it flat with out the injections. He doesn't have that ability. He takes advantage when he can and we find him slithering around all over the place.
2. He sleeps on his tummy. He is at such ease with his body that he sleeps on his tummy.
3. He is more steady on his feet. He doesn't fall as much and he has longer endurance.
4. He tries more things.
5. He can move more normally
6. I can carry him on my hips and have his legs separate
7. He lets me change his diaper because he isn't flexing his muscles constantly.
8. He seems in less pain over all

The last one is the best of all. We have tried to do all we can to have him be comfortable. He is spoiled rotten and pretty much gets what he wants. We know that. We want him to have and do all the things he can so we give him whatever he will and can do.

I am a HUGE fan of the phenol. I am sad when it wears off. Until we have to look at another option I think we will see phenol coming up again around Christmas.

Day three

The doctor ( and moms) warned us about day three. Holy smokes they weren't kidding!

He was overall pretty good but there were a few times I really thought we were NOT going to make it through the day.

This morning 2 girls from our ward came over while me and Dallas ran to our appointment. We were gone for just over an hour. I had loaded him up with his pain meds about 45 minutes before they got there so he would be good for them. Lucky for them he was.

I made him lunch, which he didn't touch but luckily the girls were able to get a full Popsicle down him while they sat outside. When it was time for more meds it was so horrible to get them down. He cried, gagged and then settled in for a sweet little nap on me! ( oh and I had to hold him down and listen to that Garggling like he was drowing sound . BAD! )

Next round a few hours later was even worse and I had to take away his movies ( which about killed me!) I can't help but give him what he wants. Especially when he is sick. He was so upset about having to take the meds that he climbed on the couch and covered himself with his blanket. He really does think we can't find him if he hides.

He didn't eat much and we haven't seen much drinking but he did spike a small fever. We don't take his temperature because if we did I would be freaked and take his temp all the time. ( yes.. I know. CRAZY!) The Tylenol has been working when he will take it. Tomorrow I am going to try some Motrin.

We ended on a good note, but we always do when Dad is home. Plus he asked for Ice cream.

And what Ty wants... Ty gets!

And the Verdict is......

Was it worth it.... Did we make the right choice... what the HECK am/was I doing putting cast on my overly opinionated 4 year old?

OH MY!!! YES we made the best decision ever.

Ty had shots done in his abductors AND in his Gastric muscles. His abductors are basically in his thighs.

Did you know that it is "normal" for your kid to be able to open his legs wide enough to sit comfortably on your hip, or on your back for a piggie back ride. Well his finally do. And the effect was seen within a day. Botox takes WEEKS.

He doesn't complain much about the casts on his feet. When we come inside he lays down and asks for them off cause we take off every one's shoes but otherwise he doesn't really say much about them.

He won't use the walking shoes they give him so he walks without them. He finds that the second he gets to the hard wood he is down. He falls so fast. He is so funny. He will then say oops and crawl the rest of the way.

It hasn't really slowed him down much. He can't go outside which drives him insane. We can't take him to the pool and he can't take a bath so he gets really bored.

It would be really nice if he had a few cousins to play with but alas... nope.

Sponge baths are interesting. He even is OK with them. I can't WAIT to wash his hair though. He washes Dallas face and brushes my teeth because we are doing that to him. He is very cute.

A few more days in casts and then we will see where we are. Any little pals out there that want to come and hang out let me know. I work a lot this week but Dad, and Aunt Sheena are here. But he just needs some kids the same age.

He even went to school on Friday. He loved it and he had a good time and he got around pretty good.

So..... the verdict is YES and in six months if asked again we will probably do it again.

He is my Brave Hero

I cannot tell you how amazingly brave and strong my sweet 4 year old is. I was listening to a song tonight that about sums up my feelings.

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
Can You hear me?
Can You see him?
Please don't leave him
He's my son

The feelings I have had this week have been a HUGE roller coaster as they always are around the times we have any kind of procedure. I half laugh because jokingly said " it isn't brain surgery" and we have HAD brain surgery ( a lot) yet it still makes my insides and my anxiety kick into gear. The feelings of helplessness, defeat, and for me a lot of guilt get thrown in as I watch him go through ONE more thing and know that it isn't the end.

The morning went really smooth considering our early wake up. Ty was actually still asleep when we were ready to go. Which is GREAT and helped with the no eating issue.
The roads were pretty good as well until we got into downtown but we made it just in time to check in.

Ty was a pretty happy camper and we got him all set up to watch a movie and get ready for the paperwork to come. When we got there and they were ready to put a hospital bracelet on he FREAKED until we gave one to his Barney.
Shriner's has a bag of stuff ready for all the kids on their bed and the puppy was in it. He was in love. The kid currently has a zoo with all the stuff they have given him this last week. So he is all ready with Barney and his puppy watching a movie.


When we asked them to put a bracelet on Barney they even wrote his name. ( man I should be a child life specialist cause I had all the answers for my kid... OH WAIT... I am)
The vitals are pretty tough for Tyler as well. He cries when they do them. I have no idea why, but again I got the bright idea to have Barney's done and Ty complied when me and Ty did Tyler's where they needed the stethoscope. It was kinda nice to not have him cry. ( yet)
The docs were taking forever ( not uncommon in a specialist hospital or appointments) so me and Ty went on a wagon ride, all over the top floor of the fun hospital. Seriously. Shriner's is a pretty happy place.

As we headed back we started consents and talking to Dr. Gooch and the surgical team. And then came the waiting.

They gave Ty Versed. It has never worked before but man did it work this time. He was so freaking funny. I would sing him songs and he would laugh and laugh. He was "telling" his dad he was a penguin and patting his dad on the tummy. It was funny. This is the hardest part of the day knowing they are taking away my baby. It NEVER gets easier. But we laid him in the bed and off he went. NOT A PEEP.. and I didn't cry because I knew he was not missing me ( that I heard!)
We ran down and got some breakfast while Ty was gone and headed back to the room.
A tid bit about Shriner's. Most of it is run on donations and from the local Shrine. They don't take credit/debit cards there at the Cafeteria. ( I didn't know) and they handed me the receipt and said oh well. That is what we are for. Seriously. So when we went today I remember a check book and was able to "donate" back.

We got back to the room and Ty was on his way soon. It seemed everything went well. We didn't get to see Dr. Gooch but saw all the rest of the team and have all of our therapies lined up and appointments for the next 2 months to see how this goes.
Anesthesia is kind of a a beast for Tyler. For and hour and a half he screamed. And yes I look mean and fed up but we did that for an hour and a half. I was blocking it out... BLOCKING... and I have bruises.


When we finally got him settled we were able to take him home. But before we did I asked the Lady to please give Barney casts and so she did. Barney had casts and was ready to go with us. Tonight Tyler wouldn't play with Barney unless they were off but he was pretty content having the same things as Barney.
Tonight was sponge bath and meds time and he was pretty tired. The next few photos are not GREAT but shows what we are looking at for his feet.

So the verdict on the feet and why we are doing this.

1. The phenol shots that were put in his gastric and abductors are to help with the tight muscles cause by CP ( or brain damage) by taking away the tight muscles we are hoping to encourage the not strong muscles to take over and help make his muscles some what normal.
   
2. Casting, after the shots helps us stretch the muscles that have been tight for a long time in hopes that the shots will work and do their magic and a more "normal" gait will arise
3. Casting will hopefully help future orthopedic problems. Look at his toes in the last pictures. They do not sit straight. They curve. That is a GOOD curve to normally how they look and it is WAY WAY worse and isn't suppose to be there .
   

Tyler is current unable to walk, and crawling is hard. He basically can't get around. Mom is his way of transportation and dad is his way of getting loves. It would be so helpful if family and friends would come buy, knowing he might be mean and unfriendly but show the support. He will know you are there. And from the mom stand point it shows you care.
Because he is totally dependant on me at this point I know I could use a few adults to converse with so I don't lose my sanity. I normally wouldn't' ask but I am asking for the help from friends and family at this time. Please come and help us out. I promise the favor will be returned.

And the moral of my story:
I love Tyler. I feel I have given up every part of who I "was" and was "going to be" in order to be his mom. More so by going to the therapy, advocating really loudly sometimes and losing "friends" in the process. I needed my son to have the best possible outcome for his sake. I will continue to do that, even it it does step on toes.

I love him more than anything.
The words of my song as I beg my Father in Heaven
Can you hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

I will and would take his place in a heartbeat.

T you are MY bravest of Heroes

The results are in

Our sleep study results and follow up was this past week. I have decided that I really like this doc a lot. She was very honest. But first, a little of the first of the week.

On Sunday Dallas woke up with a horrible sore throat. I decided to take Tyler out of the house for a few hours and let Dallas sleep and then we took him to the instacare AGAIN. I was really hoping that it was "nothing" and he was just feeling like crap and feeling a little stressed. But sure enough the quick strep test was positive AGAIN. I was so so mad. We just got done with Antibiotics from a week or so ago. And here we were again.

So we assumed that there was a carrier somewhere. Monday Ty and I went Christmas shopping and headed home. Got a text message from Aunt Sheena that she was not feeling well and she was heading to the doc. A hour later a text that she was positive for strep.

We learned that strep has a carrier and someone with no tonsils can't carry but can get strep. I am the ONLY person in the house that has no tonsils so we assumed it was Tyler the toot.

Tuesday we talked to ped, got scheduled for his last H1n1 shot and we thought we would test him to see if it was him. He isn't or wasn't sick and we waited for the rapid strep test. Guess who was positive? Yep toot face himself.

2 weeks of antibiotics to see if we can't kill off the germ and off we went. For the first time in his LIFE he will actually take it without throwing up. Did you know they can flavor augmentin strawberry?

Its seems his appetite has returned so who knows maybe he was not feeling well. But he has been much better.

His sleep study results came back. And the honest doc said, he doesn't' sleep a lot. I am sorry there isn't anything we can do.

Ok.. that was the gist of it.. The details:

Ty has awesome REM sleep the first 3rd of the night. He falls asleep great because of his sedation meds. He enters into deep sleep pretty well. Then comes his arousal. Around 3 am he starts arousing from periodic limb movment ( about 5 an hour) and ( get this) obstructive sleep apnea.( he wakes up about 8 times an hour with apnea) At first she thought it was his tonsils but she was not convinced after seeing the rest of the results. He wakes up when he can't breathe. He then comes looking for mom. She thinks that his air way is floppy. That taking out his tonsils will be like taking out part of the dry wall. She really feels like it would be a bad idea. She would really like him off his sleeping meds but at the same time anything she gives him will be metabolized in his liver. He has to have meds or he would be up all night.

He gets generally around 440 minutes of sleep that is about 7 hours. A kid his age should be sleeping between 10-12 hours to help him grow and develop. She is glad we have been putting him in our bed because apparently hearing someone else breathe can keep a kid alive.

I was horrified to see that I was sedating my child and he can't breathe. Here we are sedating and suppressing his breathing and yet he still doesn't sleep. I am at a loss but thankful he has been safe.

So we are getting an ENT consult, not for sure taking out his tonsils but getting them looked at. Seeing if we can make him safer. We are letting him out grow his dose and see if there is anything else we can do. We are going to be checking with his neurosurgeon about a ridge on his head that makes me a little nervous and make sure that his little cute head is still growing. I will be devastated if we are having more issues with his head growth.

Next week ( OK Wednesday) we go in for his phenol shots and serial casting. It was pushed back a day. My tummy is in knots till we get it done. Lots of prayers for Bubba!!