It's not easy being green....

Ty's feet had a rough go for a few weeks. Something about his feet were making a HUGE stink. We could smell him clear across the room. They were so gross. We tried everything we could. We even put him in his cast galoshes and put him in the tub and SCRUBBED... But we might have made the problem worse.

A few days after the big scrub down the smell got even worse. With a phone call to a friend in Washington DC a little bird put a thought of infection into my head and I called the doctors office. The doctors office blew me off three times.  Finally the last time they decided that we could come in and they would take a peek and see if maybe his casts had gotten wet or there was infection. I told them the stinky foot was the one where we had done the most work on his feet and his tibia, but that didn't sway them to take me any more serious.

After a convincing 48 hours of waiting ( meaning I called and left a message and it took 2 days to get back to me) I was able to get them to agree to see us right after lunch. The cast dude came in and got us and got us started in taking off the stinky foot to see what was going on.

Dr. Emily was summoned and I joke with her that we smelled funky but come on in... and then the big reveal happened. Tyler's foot had gotten so wet that his foot had some how grown mold all over his foot. Not just mold but black and green mold. It was HORRIBLE.

This foot has the most work done and the most plates and stitches that are under the casts and I was horrified when I saw what was under the casts. So was the Doctor.  She admitted him to get antibiotics for the afternoon while we got his feet dried and scrapped. He was one mad dude. 

The white stuff is the wet feet stuff. The black stuff is mold and dried blood and the green stuff is mold. We cleaned around his incisions. We re taped his incisions and she inspected his foot. She rubbed antiseptic stuff on it stuff on it, waited for it to dry and the other foot was taken off. A small amount of mold was on the other foot and we started the process again. Grayson was there and I didn't get a picture of the other foot but did get a picture of them working on him. 

After about 6 hours we were able to leave and go home. Tyler was put back in casts for the remaining 2 weeks. He opted for Green this time. He said it was for Oscar the Grouch. Not sure that he was really aware that green was GROWING on his feet.  In 2 days we get his casts off and as soon as we get  them off we run down to our favorite orthotic people and recast ourselves for a few minutes while we get our new braces done. Tyler has to stay off his feet until we get our braces off, but we are hoping we are able to at least start moving a little.

At least now we can "legally" have a bath and enjoy a bit of bubble baths while we get ourselves ready for school in 2 weeks!!!

Orthotic Specialist- Bret

During the mess with Tyler's feet we went to get a temporary brace on Tyler's feet. We have the BEST place to go. We were first introduced to Bret and Barb when Ty was just a baby. Shriner's used them when we first started using outreach. They did our very first pair of Orthotics.

I called Bret and asked for ANTHING that would keep his foot from turning and making the foot worse and make him walk on the top. Bret quickly worked us in and we had a great experience yet again. We love them .






The brace was temporary but we hope seeing these people last forever11

Orthopedics and Oncology- All in one pretty package!

Mid February I called to get into one of our many specialist to get a script for AFO's or SMO's or something to get Ty braced. I was hoping to get it done before anything drastic happened. We visited with our Neurosurgery first in hopes that we could easily get the script and head off to Brett's and be done. But Dr. Shafron had other ideas.

D. Shafron felt that it was time to talk baclofen. And not just baclofen pills but baclofen pumps. He didn't feel that he could write the script for the orthotics but really wanted us to do the baclofen trial. He checked our weight and was excited to see that Ty qualified for the pump by about 4 pounds... YES 4 pounds. This thing looks like a hockey puck in their bellies. I have not wanted to even do the trial. We were even offered the trial in Utah and I just couldn't do it.

See- This is NOT going to fit in my kids belly. He is so, so little.  The other problem is adding another foreign body in his tummy makes me want to throw up a little. Adding his shunt into the mix is something I do not want to do. Adding a shunt and the pump, puts his shunt at a 90% failure rate. That is not something that I can do to him. I just can't do it. 

I tried to politely decline and he said I could call Marie, his nurse and set it up any time I wanted. Then I of course, did a shameless plug for the Hydrocephalus Association and our WALK and he said he he would get his office staff involved and he sent us on our way.

Since he wouldn't give us the braces I needed to get in with our Ortho doc. Low and behold we found out that our beloved Ortho was leaving. I was devastated. I might have cried just a little. 

Dr. Shrader has been the BEST orthopedic doctor ever. He is kind and patient and sometimes he just sits there after he talks to us and lets us cry and offers us a side hug. And he says "I understand" and he doesn't just say it he means it. You see. He has triplets. 2 of them have cerebral palsy. They have gone through summers of the same surgeries that he asking us to go through. He will walk you through everything that you ask of him.  But you see, these triplets, they grew up and are going to college. And he has done such a great job of raising them that they are moving back to Mississippi. And they are going to continue to grow and strive and him and his wife are going with them.

So we saw who he recommended. Dr. Emily. Dr. Emily is a very nice doctor. First time we met her, she was running late and we were tightly scheduled with oncology downstairs with a transfusion for Grayson. It was our last one and we just kinda wanted to get done. So she came in, and she said he needs surgery. Bracing won't work. Bracing would be stupid. I am not writing a script. I was SO mad and got SO defensive. She didn't want to tell me exactly what she wanted to do right then because she didn't have the results of his gait lab. So she scheduled another appointment and sent us downstairs to oncology.

Oncology just SUCKS. Grayson was there for his final FINAL appointment and we did do blood and a small infusion just to finally get him up to where he was finally on the scale. But we were there in he time of needing to wear masks and it was just a MESS.

Trying to keep masks on a kid with sensory processing disorder and a 3 year old is nuts. But they did a great job. We left after the infusion. Stuffed our faces with muffins and left. I always feel DEPLETED after a trip to the hospital.

We made another appointment for Orthopedics while we were there and we were allowed to pick up our BIG HUGE TOY and Grayson batted his eyes and got Tyler a BIG HUGE TOY too. ( Let me tell you, 4th floor gets NO toys. We don't even get freaking stickers up on the 4th floor, but the oncology floor, you get SETS of toys!!......) Grayson was released to go and get his blood tested monthly with his pediatrician and he was so relieved.

I do have to say, having this experience with Grayson has cause some major damage to his little brain. He is HORRIFIED of hospitals. He is OK going with us for Tyler. He is fine with watching things happen to Tyler but to take Grayson in for an appointment for himself is literally the most devastating thing that I have seen in a child. Tyler has had 100's of procedures done on his body but he doesn't have the same anxiety that Grayson does. When I was asking for advice from some moms in a sports group, I was flat out told that Grayson wasn't old enough to remember that I would be gone or that we would be at the hospital with his brother. That is by far one of the most false statements about Grayson.

Grayson has anxiety and starts to cry when he sees show about hospitals on TV. When Tyler was hospitalized back in November, Grayson came with me to check him in and the nurses were upset because Grayson was not old enough to be on the immune- compromised floor.  But he wouldn't leave my arms. His dad was on his way, but he was so anxious.

Novembers Overdose and hospitalization- 

 His dad said he didn't leave his side as they were leaving. When they got home he wouldn't even let his dad leave the room. This lasted for 2 days while we were in the hospital. While it might not damage some children, Grayson is VERY tenderhearted.  So for Grayson and this release from the oncology ward was HUGE. For Grayson for this upcoming surgery is DEVASTATING.

*For those that TRULY think that having a special needs child and having them have physical disabilities with major surgeries often ( and I don't even think we have had it OFTEN) It truly does impact the entire family, but it impacts the siblings of our special needs children. We often refer to our Special needs children as super heroes, but the overlooked heroes, are those who stand by as the sibling watching and being pushed aside.*  ( Sorry a HUGE, TALL, Soapbox!!*

The rest of the week

Our amazingly busy Wednesday made our Thursday kind of a beast. Ty stayed at his Grandma's house until we were on our way home from the hospital. He pretty much didn't stop crying all night. He woke up exhausted and very very sad and very very tired. But he doesn't give up.

I happily sent him on the bus while he cried over not having the right movie to take to school. (Which he doesn't EVER take) I ran inside and called his teacher and let her know that he was really sad and kinda being naughty so if he is REALLY bad call me.

My OB called soon after and told me it was a good idea to come and see him. As soon as I hung up my mom called and said that they were on their way. They showed up with an amazing box of Food Ranch Donuts. I went and picked up Tyler and they went and got the "kids" while Ty had a small nap.

I left for the OB's soon after. Everything looked fine and Grayson sounds great. Progestrone was stabbed in my bum and everything else looked great. We follow up Tuesday with the peri and another appointment. I was told to have a resting weekend but otherwise I was ok to take my time and relax a little.

We played Thursday and got a call for an appointment at Shriners for orthotics on Friday. My dad came with us. Ty was in a MUCH better mood but was still NOT his self. Poor kid just couldn't get enough sleep. My dad helped a TON. I didn't even think to take pictures.

For orthotics they put a cast on till it dries then cuts it off. It isn't painful minus the stretching his legs into a good stretch but it gets old after awhile. His appointments are not fun. They are now usually pretty hurtful and he has a lot of them. Once they were off he seemed to cheer up.

The best part of the day for me was going up to not nice therapist and getting A BIKE!!! It isn't brand new and it isn't for keeps but Ty gets to practice with it. He does really well and can do it. Especially if people are out. He even drove himself over to the neighbors to go play.

The best part for him was playing with the basketball. It was so hard to get him to give it up. He loves it and "claps and cheers" for everyone who does it. We left and went to go pick up the kids.

Then the Easter festivites began

Happy Birthday... Just kidding - Actually shriners CP clinic

Shriner's clinic was today. I have not ever been through the whole CP clinic meaning we see EVERYONE and their dog. But it was nice to get some good information and see Tyler's team of docs working, whispering, comparing and the ultimately turning to me and saying OK mom... give us your thoughts.

We have had a soft diagnosis for Cerebral Palsy for a few years now. Obviously he has cerebral palsy but we have not really had anyone talk to us about it. There are a million different " kinds" ( OK not really a million but more than one) and sometimes the more you know of the kind you have the better you can control, maintain and rehabilitate. Because we were not born in Arizona we didn't have the follow up program there with a developmental pediatrician and a few other docs that seemed to diagnosis a little earlier than we got. And being that we were born in Utah we were no longer eligible for neonatal follow up.

While I don't think a earlier diagnosis would have mattered getting information NOW and finding more and more things to benefit Tyler is what we need to do. At our appointment I had 3 docs at my disposal to ask as many questions as I could think of right then.

At the Clinic we see a orthopedic doc. We saw a resident first and he came in and nicely tried to get Tyler to coperate. He was looking to see just what muscles in his calfs and hamstrings are misfiring and if there is anything we can do or need to do soon on his orthopedic problem on his feet and toes.

It seems that Ty has more of a problem in his Gastroc muscles in his legs. Once pressure is relieeved his movement is less impaired. Of course taking away that muscle is not possible we need to find ways to lessen the spasticity of it. We have been doing that with Botox and with Therapy and stretching at home.

Orthopedics are looking at just having him wear his SMO's for awhile and not the AFO part of his braces in hopes of keeping him mobile and not impairing his mobility.

As a finally suggestion orthopedics is looking at doing a gait study to see what input we can get from his muscles and movement to better improve his gait. This won't happen for a few more months as they want to see if he can "age" a little more cognitively so he will follow directions a little better along with not getting so upset when they touch him.

Our rehab doc came in with orthopedics and we talked with her a little bit. Dr. Gooch is a little cold at first but she came in and I was able to talk to her a little bit and she provided a great deal of insight into Tyler and cerebral palsy in general ( at lest HIS type)

So Ty is considered having Spastic Diplegia Cerebral palsy. It is most commonly found in babies with PVL or brain damage caused at birth ( right before birth, or from a oxygen deprivation at some point in the birthing process) Ty has PVL and we have known about it since he was in the NICU. Some neonatologist refer to it at "cystic changes" in the brain. They showed up with his brain ultrasounds after his grade 3 and 4 IVH "resolved." It is usually a precursor to Cerebral palsy. Also this type of damage, Tyler is at risk for seizures. If he can make it to age 5 without one we are looking at a relatively LARGE breathe of fresh air.

Dr. Gooch is impressed with his Botox but they are noticing that at the end of his cycle he is pretty tight. Between her and ortho they would like a few sessions of physical therapy, possible round of botox and in December we are looking at being admitted to Shriner's and Phenyl injections in his gastroc muscles. Last year they were looking at doing a phenyl block but decided to do botox instead. This time they want it in his leg muscles ( which makes me much happier) and we are hoping it works better.

They decided to invite in Dr. Samson Fang. While I know lots that love her she kinda rubbed me the wrong way. I kind of felt like I was being talked down to yet I already had all the therapies set up, the docs we see etc. So all the info that she offered was already done. Minus she did offer to give me the name of a social worker for medicaid D.

Dr. Gooch and Dr. Carol got us on the therapy list up at Shriner's, so although it is a trek to get there it does give us PT, OT and Speech. That makes me feel just a little bit better. If we do get medicaid D we can get some of that therapy a little closer to home.

We were able to get an appointment with Orthotics and our evaluations are all set up.

I am so thankful for Shriner's and for those that donate to the wonderful hospitals and care they give. Not many places are free and that the medical care is above and beyond anything we have ever experienced. What great people there.

It was a great consult. I didn't leave upset, angry or frustrated. I felt I was talked to, informed and most of all that they cared about Tyler and his care.

Orthotics For Tyler

Today was the first ALL day we have had with the new contraptions in our house. Yesterday Tyler was fitted for his orthotics. We have had a heck of a time getting into get his new braces and we have had a heck of a time fitting Tyler with orthotics. I am sad to say he hates them.

Our appointment was in Downtown Phoenix. It is weird to think that that was almost my LAST appointment to have to drive to. We got to Brets right on time and we waited pretty much no time at all. I got us set up with his DVD player just in time to get us back to our room. Bret was all ready with Bags and bags of these new and improved kiddie gait AFO/SMO's. I got them out for him to look at hoping to ward off the evil spirits of actually having to put them on. He looked at them joyfully and then put them down on the table and signed "All done."

* Technical/medical mumbo jumbo to follow*

AFO: Ankle Foot orthotic- it goes on the ankle and up the calf to support the leg.
SMO: supramalleolar orthotic- gives the medial and lateral support needed for calcaneal valgus, pronation, and supination with high or low tone. Or basically just encompasses the foot and ankle not the rest of the foot.
Kiddie Gait- Titanium AFO with no SMO. Ty has a separate SMO to wear with his AFO/kiddie gait.

I spent the day telling him about what we were doing. My tummy was in knots because I KNEW this was not going to be the most pleasant thing that he has to endure and that he would cry and be upset. I wasn't disappointed. He was upset. VERY upset.

When Bret comes in Ty starts telling him no. Ty doesn't exactly have a wide variety but No is in the limited one he does have. He waves but is still really really conscious of what is going on. I talk with Bret for a minute and we start the process.

We put on the SMO and the tears start and never stop. For the next hour Ty is subbing, gagging, temper tantruming and barfing. The bad part of him being upset is the muscle tone that he gets. He is TIGHT TIGHT and we can't barely move his feet. The stinker won't stop either.

The end of last school year ( when the ordeal to get these new braces started) I ordered some new balance shoes for him that were extra wide. They are HUGE on his poor little feet. But alas they still weren't wide enough but they were Velcro. We tried and tried but his foot and his contraptions just weren't going to fit.

Bret fitted them, and left to round down the edges and make them fit better and he came back with a pair of orthotic shoes. The new balance shoes were NOT cheap. Like 55 bucks I think. I know.. Who the heck pays that much for shoes for a 3 year old. NOT ME. I was pissed. But even better, guess how much the orthotic shoes are? Yeah... 99 bucks.. NOT KIDDING. For a KID!

Anyway, they are the only thing that is going to fit the braces so what do you do!

We get his shoes on and he is still gagging, and coughing and crying and now throwing a full on temper tantrum. We put him in a walker because these new braces literally cause him to not be able to move on his own so he needs assistance. ( I hate that the things that are suppose to help them hinder at first!) Here he starts throwing himself down on the ground. Hitting his back as he goes because he doesn't want to walk. He is FREAKING out by this point and I can't give in or he wins.

Poor Bret was so upset that he made him cry like that. I told him it wasn't his fault. He "mention" that Ty is so stubborn and so STRONG he felt bad he would only make things worse if he tried to help.

Ty and I walked down the hall to see if his foot placement was ok and he was screaming. Like full on screaming. I let him throw his temper tantrum when all of a sudden the banging started. As in HEAD BANGING against the floor. That made it so both Bret and I lost. The braces were coming off.

Braces came off and red spots were assessed and Ty was a happy camper.

Then came the good part.

Payment!

The braces cost somewhere around 3 grand. And the shoes are another 100 bucks. BUT we have been praying for a way to pay for them above just forking over the money. Bret and Barb have a hacked website so Dallas is going to be developing a website for them. In exchange we get the braces and the shoes for trade!

Today Ty wore his braces for therapy and he did an awesome job. He even got to play Wii Fit and LOVED it. He was happy to have them off though.

Watching him through this last week and going through the struggles of communication we have had tonight I am so glad we didn't rush into more children and not have the time he needs from me and Dallas. He is so sweet. But prematurity SUCKS! I hate it and it causes my sweet boy pain.

Posts to follow regarding our new milestone. It has left us all smiling for 2 days now!

Long time no update

I posted on Wednesday but it feels like a million days ago. A lot has been going on the last 2 weeks and I haven't really updated.

I had a really really hard time with this surgery. Like I couldn't stop crying. Stupid I know but I don't think a day went by that I didn't call my mom bawling.I was frustrated, sad and so upset over his tone that I felt VERY alone and not sure where to even start to get him help or to figure out something.

On Monday I sent him back to school. He was still a bit gunky but nothing like he had been. Because he was clear of green stuff I thought it would be good for him ( and me) to get him back into a routine. His teacher agreed on the tone and said that when he would get excited and play really hard he could hardly keep his balance. He was encouraged to use his walker and they used the wagon a lot more than they ever have with him. It was very discouraging to me. I thought maybe I was playing the over reacting mom and was "seeing" things but nope.

Tuesday we went to PT and OT and music. He was having a rough day and wouldn't do anything for Jackie ( his OT) His PT was sick so when I went down the hall I heard him screaming so I went in to save the poor girl. Ty was not having ANY of the activities that he was directed to and was throwing major Tyler tantrums on the ground. It was not the best therapeutic session we have encountered. On a plus note Jackie said she didn't notice a increase in his hands just in his legs.

Like I said, I was a mess. I went home and bawled. Part of the day was spent frantically searching for someone who had any experience with increase tone and the other was calling his docs and specialist to figure out what and who was responsible to help us figure out the next step.

I got myself together and called his Rehab doc and left 3 messages ( and have yet to hear back from them.) I called his orthotic dude, Bret, and Brett decided we needed to be seen. He is AMAZING. We got an appointment with him on Thursday.

Before we got into Brett we were sent to do scans and a Shunt series ( the CT for his brain, the shunt series to make sure the tubing is draining in his stomach) the Shunt series was needed to figure out where the old tube was. I wish I had a picture of the scan that showed all of his tubing just hanging out in his tummy.

Right after our scans were done we headed into the Neurosurgeon for a follow up and was able to ask a lot of questions. The info that the neurosurgeon gave me was that his ventricles were so large and went so small in such a short amount of time his brain is in shock. The shock therefore causes him more tone. He rarely sees a kid that doesn't go back to baseline in a few weeks.

Till then we increase his stretching and encourage him to walk and do our best to get him off his toes. He is doing much better. It hurts my heart to see him regress. It was kinda tough on my. I cried.

Bret's appointment was on Thursday and we had a wonderful visit. We rescheduled till 11 due to Ty actually sleeping till almost 8. There was no way to make it to Downtown in less than an hour with a shower. The drive was uneventful and I even managed to make sure I didn't speed as to avoid Arizona's speed cameras.

Bret agreed that his tone had increased and that a few other spots were tight. We talked about his castings and his new braces and what is the best course of action. We have botox scheduled for April. It feels like it is all in slow motion in hopes of the botox working.

We are looking at finding something med wise that will chill Ty out enough to get a good casting. Bret is going to be calling our docs and seeing what we can find out. Along with meds and having Dad there we hope that we can get a good new casting.

We called Dallas as soon as we were done and asked if we could drop by. He had a meeting so me and Tyler decided to hit up the mills on the way home. We got to the mall and ate some lunch and shopped for several hours.

We had a great time and Ty even got to play with some puppies. He had a good time and he was such a good kid.

Friday was a bunch of errands and we had our neighbors over for a BBQ on Dallas new grill. While we were eating Ty decided to sit on my lap and "eat" with me. He had had lasagna before we all sat down. Since he "eats" my food with his hands first he was super messy. He always has to touch my food. ( I think it is his eyes but that is just me) Anyway, He took off with my corn on the cob and took it into the living room. I chased him down but took pictures before we got him to give back the corn on the cob

Ty eating dinner. He had his OWN corn at the time.

It ended up being a good week. I am glad we have some answers to his tone questions.

Orthotics again?

We are heading into the "big city" of Phoenix tomorrow to be fitted for different kinds of braces on Ty's feet. While he seems to have gotten out of the habit of being on his tippy toes his arch is collapsing and he grips with his toes. He has awesome balance for someone who has such bad muscle tone.

So first thing in the morning we are heading into the city. I have no idea if we are being re= casted for a 3rd time or if they will do something else.

One thing we are also noticing is how bad his eye is turning. I think I will be calling the doc for a new script to purchase another set of glasses to see if we can't help out this kids eye sight. Grandma Brown seems to be the only person that can keep glasses on my kid. Guess she will have to move in.

( oh and for the record.. The "list" as kinda a joke. While I would "love" to spend that kind of money I would never use it.I would much prefer the last ones!!! HONESTLY!!)

As for the rest of us.. we are boring. Ty is taking us for a ride and we are having a great time. He is a blast.

Something funny. He has really been fighting me in the afternoon from putting on a diaper. He doesn't want one and would rather be naked. Anyway he headed into the bathroom and and opened the toilet and peed.. Yep! But not IN the toilet, around the toilet. He got some toilet paper and put it in the toilet.

So we are buying a little potty chair and seeing how it goes. I don't have many expectations that it will work but a mom can dream huh!!

Weekends go by way to fast!!!

I can't believe the weekend is almost over. I LOVE having Dallas home. LOVE it!! It has been one C-R-A-Z-Y week and I was oh so looking forward to the weekend.

So the week in review:

Monday we had our neurologist appointment that went SUPER SUPER well. He gave us some new meds to try with Ty. They suck. So I am calling on Monday to get something else till we can get in for the testing we need to do.

Tuesday was my day off from work so I am glad that we didn't have anything planned and Ty and I were able to take a nice nap. He seems to do great when I sleep with him. To bad there isn't a bed big enough to make that happen.

Wednesday was another big day for us. We had a eye followup with Dr.S and he did great. Ty screams when a doc gets anywhere near him now so he happened to freak out when I had to hold his arms down and make him open his eyes. But Ty is doing better and is wearing his glasses for longer periods of time.

After his eye exam we went to our first PT appointment. We are trying to help Tyler learn that he needs to participate with someone other than his mom. He is so clingy and so a mommy's boy that it is getting a bit out of hand. So we decided to do clinic based therapy. He of course screamed through most of this and didn't show the poor PT that he could do half the stuff he can do. So I get the look of " gee mom you were feed a large piece of crap and you ate it. We don't believe a word you say" look. I know all you moms with "special" kids get it. So I am hoping in the weeks to come he participates better.

Immediatly following our appoitment with PT we were on our way to get his braces checked and fixed. He won't wear them at night so we are having to find other ways for him to wear them. He wears them outside and we practice walking up and down the sidewalk. We have also taken him to walmart where he walks the cart. We take forever and I am sure all the people who are there hate us because we are slow but I don't care much.

We did stop at Burger King and have a burger and all the power went out so we were sitting in the dark and the smoke. Smoke because the grill didn't have a fan to let it go out. After eating we drove to Scottsdale before hitting Pheonix. We wanted to see D and give him a hug. I LOVE visiting him. We also met all his co workers and had a great time.

Thursday was our interventionist from the Foundation for blind children. I LOVE this lady. Her name is Marta. She tries so hard to get Ty to do stuff with her and not with me. Ty is getting much better about it and he always gives her a hug at the end of the session. She is also there at the foundation on Mondays for our play group when we are able to make it.

Friday was my day off and me and Ty were the laziest mom and kid in the world. We hung out in our jammies watching barney and baby Einstein all day and reading books. We showered and stuff after daddy got home and smelled how stinky we were :)

I had Friday off and Dallas made me a great dinner that we ate together after Ty got in bed. I love spending time with D. This time next week we will be waiting for my mom and dad to be here. SO EXCITED!!

Saturday was my day to get up with Ty. I was sure hoping he would sleep in and well.. my wish was shattered when the poor kid was up by about 5. Poor kid. He did spend the day playing though. We woke up from our nap to find our dad missing. He had made an excursion to Home depot and was outside being man domestic and put in a few plants ( that I killed... you still have to water them apparently) and some wonderful looking lights. I just hope our stick tree isn't really dead. We went to dinner and I headed into work. I am not LOVING work after ten pm. So Any prayers and well wishes would be much appreciated.

So tommorow we are attending our new ward. And we are going to spend the whole day enjoying each other. I sure hope the week goes by fast.

The most exciting news of the last several weeks....... WE FINALLY GOT LONG TERM CARE for Tyler. For those who read this from Utah. It is basically DSPD but no waiting list. We will be getting respite care and other services to better help with Tyler. It also means we won't be having to pay extra for anything medical. His meds will be paid and all copays will be paid. Saves a little each month...and well Respite is gonna rock .


So that is our week. Stay tuned for Ty's mohawk