What a LONG month this has been. I have started a ten blogs about the stuff we have been doing and finished none of them. Something always comes up, or I get frustrated or the inner conflict I keep having always seems to make it so I don’t want to push publish.

T’s school year has been going. Not awesome like I had thought it would, but not so bad either. We have had some major complications with communication and major frustrations in trying to figure stuff out.

Ty had his testing done for second grade and he got 3’s out of 4’s. So he is on task for a 2nd grader in most stuff. Of course the take into account that he can’t write and that he can’t do some of the things he needs to on his own. But overall he is doing really well. Our first biggest challenge is getting them to follow his IEP. Some of the things are being over looked. I am sure not on purpose, but none the less, still being over looked.

We are also working with him on math. He is slowly grasping the concept of it but they are learning touch points and we have had to learn to adapt his ability to figure out the touch points. I tried coming up with a great idea and he seems to be catching on, for the most part.



He has done really well, he just doesn't love homework. Plus he has to do homework after we have him therapy all afternoon after school. Sometimes I am sad he just can't be a kid. We will see how well he tolerates the "normal" activities of scouts that comes after an hour of Physical therapy.



Our success of having his seizures slow down was slow lived and we are back to the drawing board and having to up his meds to a WAY higher dose. It kinda makes me sick to shut the door at night and turn off his shows because I never know if he will wake up in the morning.

We celebrated his birthday this week. I was going to do a birthday post but am going to skip it this year. There are to many private emotions that I don't want out there for others to make fun of me over ( and YES sadly there are people that would do that) and I would rather have them in a more supportive forum where those people are NOT invited to be.

However, he turned 8. Had an amazing time and three days later we are still having birthday activities. In 3 weeks he while have his baptism and we will have cooler temps and Halloween to look forward to.

Overall, we just keep plugging away. I will gain 12 hours more "work" this upcoming month and can't wait to have all my hard work FINALLY pay off. But it will and I am more determined ( thanks to those who aren't all that supportive) to succeed and keep on going. Our five year plan might even be shorter since I am more "complete" than we thought.



Oh and it looks like we will probably be in Utah again in November for a gait study ( for 2 of them) bike measurements and phenol. Then three weeks after that we will be having botox here. Next week we do orthotics and therapy and well baby checks for everyone. Guess that means flu shots all around.

What a busy week

I don't have much information this week but thought I would stay  caught up. I hate being behind and I know some people enjoy stalking us, so I better give them content to keep staring.

We had a TON of appointments last week and way to much extra stuff that I was over my head. But as we took a deep breathe and relaxed we started to get a few things done.

Ty has finally gotten into therapy and we are in full swing with  ALL THREE all week!! We love it. We see his Physical therapist on Tuesday afternoons and his respite girl takes him. He loves it. He works harder if I am not there. We do have to bribe. Massively bribe.

Wednesdays we have Speech therapy in which we know that Grayson won't be getting a nap so we try really hard to wear everyone out and make it home ASAP! He gets to hang out with me at therapy and he doesn't love it. I think all therapy places need to offer sibling courses while we hang and wait.

Thursdays Ty's occupational therapist comes to our house. We LOVE LOVE LOVE it. I haven't done home therapy since he was a baby. We stopped having home therapy when he aged out of the Early intervention program. I love it. Not only do a get a few minutes of them playing and no sound in my house, but Ty loves it. The past few weeks they have worked on using utensils, dressing and playing angry birds. Not on a computer, but real angry birds. Grays likes to take advantage but mostly he just comes and goes.

This last week we had some horrible experiences that were turned positive by an outpouring of service. It was so wonderful to see something good come out of something SO BAD! It helped us look forward to our visit with our grandparents and Aunt Ti Ti.

We had some wonderful adventures with them.

Oh and I got my grove on.... LITERALLY with my old flames NKOTB and the fab Nick Leche!


Posts with photos coming up.



I forgot that we instagramed our therapy session. We did get a nap in because our therapy was done at noon. But it was not a long nap. But that is ok!

Next up, A birthday boy!

Speech Evaluation

Since getting disability and starting back on the band wagon we got a private speech evaluation so we could start private speech. No speech evaluation is the same. This evaluation along with the last one used the same test but this time he was able to get the "older" test.

We started the test with Miss A and he did really well. This was the first time that I had seen him actually listen to what they were asking and then try to answer correctly. The hardest part is when Tyler doesn't know the answer but wants to answer right and looks at me with these longing eyes. He wants to be right. He wants to make me and Miss A happy. I was happy to see how well he did but it broke my heart that he just couldn't do some things. I was also happy to see that positive reinforcement by Miss A was made.

Ty is very much not speaking as a 6 year old. He qualifies for 2 sessions a week but will probably only get one because of how funny insurance is. But he is getting more than we were getting at Shriner's and I am so thankful.

So speech is set up. That makes 2 therapies. OT Evaluation will be in a few weeks.

Welcome back.. right?

Milestone moments

Over the last 3 months ( since school let out!) there has been explosions of words. We add words almost every single day. In fact in the last 3 weeks we have probably tripled our vocabulary and random words will just pop out.

The other day we were doing something and his animal fell. I said "What happened?" fully expecting a grunt. Instead I got "happen." Dallas and I looked at each other and gave our praise junkie EXACTLY what he likes. LOUD clapping praise~!

This morning we were making his bed. It is his only official chore and he LOVES it. He has frogs and he said "Ribbit" plain as day!

Since going camping he has asked for Mickey Mouse tent and Fishing. So today we made a tent using chairs. He got up on the chairs and he tipped it over. When the tent fell down he said " Oh no TENT!" He didn't even care he fell over.

The best of the day.... We needed to get out and we went to get Burger King and play. There were 2 little girls that kept asking him if he wanted to play in there "castle." Normally I intervene and let them know he doesn't talk and blah blah, but today I let him go. He followed them and then they asked him if he wanted the red or purple spot. BOTH are words he knows. I was not looking up but in his SWEET little voice he said RED really loud. They went to the red and he kept playing. I was so excited.

The best of the WEEK: We didn't hear the garage open one day and weren't sure when Dallas was coming home. He has had to work late a lot the last few weeks so we are kinda just awesome pals all day. We were telling finger puppet stories and the door opened. Ty hopped up and went running. For the first time EVER he says "Dada, dada" and jumps into his arms. Ty has been able to say dad he just WON'T without some MAJOR prompting. He usually signs it too. This was HUGE. The smile on Dallas face was priceless.

We can't wait for him to start school and head back to Speech. Seeing how much he has progressed this summer makes us really excited for 3 days a week of speech and the interaction with kids.

A friend of our that has a special needs child made a comment the other day. She said " I bet you NEVER get tired of hearing him babble or talk huh." It took me a second, and realized that I didn't ever get tired of it. NEVER. I don't care how much he talks when he is older I NEVER want to tell him shut up or complain about him talking because somewhere there is a mom ( like her) that doesn't get to hear even the smallest word.

It breaks my heart to hear other people complain that their kids talk to much. There is not anything in the world that is better than them having a voice. Hearing that voice put 2 things together is amazing!

(Sorry to Aunt Nicky for calling when we have new words. It makes me happy we can share them. )

We have till six

When we had Tyler we were not worried about his talking.We knew he would be OK. And we truthfully thought that words would just come.

Instead we really worried about his mobility. We did extra therapy to get him moving. We moved therapists when they told us that she didn't think he would walk. We encouraged him to move even if it was not a perfect gait.

Around 2 there was still no words but mom. There was more and more frustration. As time went on 3 came and went and still no words.

Moving back to Utah part of the reasoning was to get him around other kids ( like cousins that we would see much more frequently.. we had hoped) and sure enough. Just after Christmas we got a few words.

We go to therapy in Salt Lake City ( up around the U) and we sit through a 3o minute session then dive into Physical therapy or Occupational therapy or both. That leaves us there about 2-3 hours every Monday. It is a 100 miles round trip. Then through out the week we have our regular Doctor appointments. ( We see 9 specialists a Year. Some are every six weeks)

Something clicked in the last six months. I am not sure if it was school or just him. But we officially have WORDS.

Some words are only first letters of the objects he happens to be describing. Some of the words are not pheoneticly ( even spell check can't get that one right.. sorry!) correct. Sometimes he breathes in instead of out. But his point is getting across.

And the FUNNY side. He can spell. He can't say the word but he can spell. He can Spell Tyler and Mouse.

(I will try my best to share his words and how they sound)

DAAAD ( its really drawn out but it was the only way we could get it loud)

Key ( mickey)

Ick ( Nicky)

Gun ( signing more for Morgan)

x ( the sound for Max)

Ko ( koy)

K ( Kayden)

ex( Lexi)

pizza ( the z is said breathing in and spaced from the rest of the word)

doe ( done)

Ball ( signing at the same time)

All the animal sounds ( that are normal any way)

GiGi ( grandma)

Pop pop ( grandpa)

The whole alphabet and most of the sounds. And many many more. We are even starting to string several words together. It is VERY exciting to hear words.

If you spent time with Ty... You will start to see that new personality and lots of new words and when he can't get his point across a very frustrated little boy. But we have words.

They say speech needs to come by 6..... So I hope we keep going!

Gotta Watch Wheel Of Fortune

Last week we were watching regular TV while we got dinner ready. It is a REALLY rare occurrence. Wheel of Fortune came on. Yep! I really thought that Ty would freak out and have a fit but instead he was laughing. And Laughing.

I won't tell you what happened in MY seat.

But when someone makes a wrong answer and the beep comes on. OH SO FUNNY. He falls over.

This happy special laugh is what makes MY DAY!!

And just for kicks. He repeats the letters that come up on the screen, he touches the squares with Vanna and I think he secretly has a crush on her! Does this mean it counts as speech therapy? Does Vanna charge insurance?

And the WINNER IS!!!!

THE MOM!! At Nelson5!..

Congrats.

( an email is in your inbox)

A special Thanks to VOICE4u for sponsoring this post and giveaway.

No worries I have a few more things to giveaway ( if you didn't win)

Thanks again for all who entered. I appreciate everyone who reads our story and participates in my day, life and my parties ( good and bad!)

A long time coming

I am so proud of Tyler. There are so many things that he has been doing that have made me smile. He is working SO hard to get to where he is. So many things have had to come together to get him to do what he was doing today.

Tyler loves outside. After him and his dad got back from a dad outing he wanted his shoes and socks off. As soon as they were off he was ready to play.... OUTSIDE! in 46* weather.

I of course thinks it is great that he will pull himself away from Mickey Mouse or the Little Einsteins enough to enjoy something else, but even more ecstatic when he is all BOY!

I could hear sounds while I was in the kitchen and heard an " oh no" come out of Tyler's mouth and came to the door to see he had found his Heffalump elephant ( that has been IN the dirt since summer) and he was saying "oh no" because he was dirty. So I made Heffalump a bath with a bowl and we got him all clean. Just in time to go out and throw dirty with Leo and Barney.

Ty climbed through the dirt to get the hose and he was just jabbering away. So I went to get Dallas. Dallas came out and played with Tyler. Ty figured out how to get ALL of his animals in his arms at one time from point A to point B and then ring around the Rosie's were all set!

Ring around the Rosie's with Tyler, Heffalump, Leo and Barney and Dad. What a better combination. Tyler was in HEAVEN.

After a ring around the Rosie party Dad and Tyler decided to play soccer but our best friend Barney had to participate. Tyler is teaching Barney how to kick. We even got the "ki" Sound out of Tyler when his dad asked him to say Kick. We heard a lot of Go, signed a lot of Dad and please but had a KI word with a dad sign and please. THREE WORDS!!

Tyler even got in on the kicking action with a little Pooh Kicks and soccer. He would "kick" and run after and give it to dad for dad to kick in the air. They would go back and forth and then the giggles.

OH!! The giggles. He giggles so hard he falls over.

And really who doesn't want this cute kid on their team. He is a awesome cheerleader and awesome kid overall. He is so great.

Look at that form. Look at that SHOT! He would be any persons pick for their team.

And what would the day be like unless we can sit down with our friends and clap and smile and play!

Ty and Barney, Leo and Heffalump. The best of friends.

The best part is that he is pretend playing with these "friends"

(PS. Barney and Tyler are potty training. Hence the Thomas on Barney)

ENT!

Today was the postponed and postponed again ENT visit. Or the Ear, Nose and Throat specialist. Why did we go you ask? Back in December we had a very lovely sleep study at Ty's pulmonologist and sleep doc. She was not impressed with Ty's ability to stay oxygenated at night. She said she felt he had sleep apnea. Part was centralized ( which is bad.. oh so bad) but the moajority of it was obstructive. Which if you are gonna have apnea that is the "better" one to have.

Centralized apena means that some where in his brain is a problem that is not allowing him to keep breathing. But the obstructive usually means that the child has something that we can HELP for him to sleep.

So off to the ENT we went. The ENT that we went to was great. I was pretty impressed with him. His bedside manners was very impressive. He was very kind to Tyler. He was VERY gentle and didn't seem to shocked to see that we were sitting there.

Generally, in specialist appointments ( especially since the depo lupron) that I find myself over emotional. This time.. NOTHING. Just had a lot of questions. I think I felt like they wouldn't come out with this SHOCKING and horrific problem that we couldn't fix.

As we did our exam ( and I say we because ME gets to hold down Tyler) Ty did pretty well. He didn't freak as much with this doctor as he did with his pediatrician yesterday. There was apparently lots to see and talk about.

The "funky" ear from yesterdays visit is in fact infected. Which means that in 4 years Ty has now had 2... THAT IS RIGHT 2 ear infections all in the last six months. Because he didn't get them when he was little they are concerned that he has a continuation of fluid going on behind his ear. So Ty is on antibiotics AGAIN and ear drops.

Next up were those pesky tonsils. Tyler doesn't get sick that often. So it was a little "shocking" that he needs his tonsils out. The tonsils at first glance look great till he saw that they sit down lower than "normal"and the bottom part of his tonsils are so big they almost touch. Which means that OUT they come.

For most ( me included) I thought ok lots of kids get their tonsils out. In a few days he will bounce back and be fine... Oh no. So apprently with kiddos "Like Tyler" we will have to be for 24-72 instead of the normal same day. Because we are cutting into his throat we are opening up a HUGE risk for a shunt infection. So prophalaxis antibiotics will be givn before and after. Chances of him landing BACK into PCMC for dehydration is more than 50 percent because he cognitevely does't understand bribery in orer to stay hydrated.

Last but not least, though we need them out in a bad way Tyler is at HUGE increase risk of any "elective" surgery being done during RSV and Hn1n we get to wait till it is over. He has like EVERY risk factor for bringing home more than he went in with .

So yes, Ty needs his tonsils out. No we won't be doing it soon. Yes we will have to stay over night. No I don't really want to. Hopefully it will answer and solve some of Tyler's intermost secrets.... WHY DOES he NOT sleep!?

When it is good

Have you noticed that when things are good they are GOOD. It seems that sometimes there is no in between. We have had such a great few months. He has had some great strides and some great advancements. Hit some bumpy stuff but not massive brain surgery bumps. It seems that it is getting " different" for sure.

When we were in Arizona we were having a lot of testing done in speech. We hadn't had a firm diagnosis ( and we still don't) but there was no "reason" for it. Still isn't. Because this new speech lady approaches things VERY different. It doesn't fix the problem and we are seeing HUGE strides.

One of the things that people or the " doctor" people see as the problem is that he seems to get the first part of a word but can't really connect the LAST part of the word. For now we are THRILLED to get ANY part of the word but something doesn't connect.

Another funny thing is the sound that he makes for some of the letters. He can identify them GREAT. But he doesn't get that the F sound doesn't come out his nose but comes from placement of his mouth. He does the same thing for the V sound. It is done through his nose not his mouth. When we put his hand on our throat so he can feel it and so he can see up close the way our mouth is he can mimic the sound but it isn't "right"

One of the first "doctor" people we saw said that his lack of imagination or pretend play played a big role in him not talking . Well since moving we have seen more pretend play with promptings. For example, during a show if someone is eating food he has to have that food and then he spends 5 minutes getting his Barney to eat it. He jumps with Barney and does so many things by taking that doll with him. It isn't playing dolls or kitchen but it is something that he wasn't doing before.

His play is not so boring right now and he spends his day jumping, and playing on the piano. Going outside is another HUGE for him. He loves to eat the snow. Its a huge part of his day and I can't wait for him to get outside with warm weather.

Tell then we work work work and get those words coming.

A whitty post about Therapy

Ty attends therapy in Salt Lake City at the Shriner's Hospital EVERY single Monday. We usually get 3 therapies but today was just 2. But today we made excellent strides in BOTH! Our incredibly expensive health insurance won't give us but 12 visits a YEAR for therapy so we need the other "options" given at Shriner's.

The bad part of that, I don't LOVE his speech. But will take it because, well, we don't SPEAK! He struggles with participating with her and he doesn't like her to touch him.

He did really well with his transition. So I really felt that today was going to be a good session with her. I went in with him initially to show her the Alphabet song he sings and so that she can hear the vowel sounds we are working really really hard on. I always walk away with her saying " That's nice but he is is missing some key points here." Like I don't realize he is not getting "THE WHOLE WORD"

Tyler wanted to play the games she had set out and he really likes the Barney match game. He still won't let her touch him to have her show him how the word sounds so he will whine as he plays but overall he is doing really well.

OT transition was the best we have had. Chris really plays into his sensory issues. So he gets LOTS of swing time, jumping and that makes it easier for him to sit down at the desk to do his fine motor skills. He did great today.

Today was a good therapy day. They don't always go that way. Savoring the days that DO go that way!

The LAST eve of Prematurity Awareness

I have slacked the last half of the month because life with my baby ( that is a big boy) got hectic and nuts. Its all been a bit overwhelming and a little nuts!

His sleep study results came in the mail but we have a follow up on Thursday so I have lots of questions before we share the results. BUT mainly he drops pretty low on his oxygen and needs some requirements to keep them up. We don't know what it is yet but he wakes up about 5 times and hour from not breathing and wakes up 5-7 times and hour for his legs moving. His average sleep is about 6-7 hours.

We are still doing therapy at Shriner's and hope to be able to get Tyler on disability soon so that his insurance will cover someone a little closer or even as close as Riverton at the new hospital. I am hoping that the shots and the casting will work really well and we can relax a little and the therapy will help the kiddo out.

His speech is coming along really really well. He is doing most of the alphabet with sounds. There are still a few he hasn't figured out but he knows what they are and can match them. Its getting a little easier to communicate but we are still limited on his words. He can't seem to put them all together to form words. And some of the sounds are just sounds that he is imitating the SOUND but not how it is really said. ( that probably doesn't make sense. A example is the sound the F makes. He sounds like he is making snot and boogies.)

We are getting our second round of h1n1 this week ( hopefully) and have been battling a consistent battle of strep. Tyler has been surprisingly fine but Dallas keeps getting it. We don't know if Tyler is the carrier or me or Dallas for that mater but man I think we are done with it. His little sister who is staying with us came home with it today. But Tyler and I have seemed to be ok ( for now!)

I will have to post about Thanksgiving. I am still recouping my emotions from getting to see Max and Morgan and Barrett and Chantel and having them gone. We are gonna miss them.

Stay tuned for more Holiday fun and some awesome pictures from the weekend.

Did someone say SLEEEEP!

Today was a good day ( and a bad day) but mostly good! Tyler was and has been such a good kid. I wondered where this angel had been hiding! I hope it continues but here is the stories!

After Tyler and I being sick it seemed to take forever for him to totally bounce back. Sunday afternoon I wouldn't let him watch a movie on the computer AND the TV so he got mad and laid down to pretend to fall asleep and he was OUT for 2 hours. I really thought we were in trouble for the night since that seems to be the trend with Naps. BUT nope. Other than he NEVER has slept through the night ( minus I think 3 or 4 nights in 4 years) he ended up in our bed but overall he was great.

Monday is our big therapy day. Of course I really thought at his 5:30 am wake up call we were in HUGE trouble. But I was pleasantly and thankfully surprised. Since I had a bad and frustrating weekend with communicating with other people ( not in my house) I was hoping for a Angel day.

I had been reading "The Sensational Child" book all weekend and had found a few "skills" and coping techniques for some on the sensory stuff we have noticed in Tyler. We talked all morning about Therapy, we hyped him up with picking his own clothes, picking a reward if he worked hard, playing incredibly hard with him BEFORE ( see he has some sensory SEEKING behaviors we were trying to fill) we left for therapy and we let him totally TRASH his play room ( and eat whatever he wanted) and then we left.

He fell asleep on the way but woke up happy. And he was ready to go. I let him make all his own choices about how we would get in the building instead of just doing it for him. And made him walk and push the stroller ( another sensory behavior modification for over sensitivity, YES he has both... he has more than 2 actually) and talked about how he was going to go to speech and he would like it and he would participate.

The transition..... ROCKED... that is right Very little crying. He even did as he was suppose to and participated ( more) than what he had before. He was bribed with jumping on their tramp and sliding down the slide and the reward he had decided on at home ( a Thomas sticker) was given. He then spent the next 3o minutes in the big play room there at Shriner's playing with another little boy and he was having a good time.

To help move on to the next activity ( which was lunch and another appointment) I had him push his stroller again and he did well with the transition. ( I am LOVING this new book)

The appointment we had next was the coveted sleep doc. ( if you want her name you will have to email.) She normally is very hard to get into and I was expecting a LONG wait to even see her but it took only a week! We got to fill out the really large packet of papers and while in the waiting room Ty played a number puzzle ( which he got right!) and got out a fire truck and pretend played with it. ( You have NO NO NO idea how big that it for Tyler, or a kid with "issues" and he did it on his own) And then he found a vacuum and did the same thing.

So the doc came in and got us herself. No nurse, just the doc. She was running around crazy in the back ground when we got there. I had no idea it was her. And she started asking questions. She is probably the first doctor I have ever heard say " You poor mom, are you tired? We need to get you a nights sleep." Yes she was concerned about me.

She decided that she didn't agree with his first diagnosis of benign sleep myclonus because the problems occur LATER in the evening. Like 3 am and on. She is pretty sure that he has a genetic condition known as Periodic limb movements or PLM and it is in the same family as restless legs.( did I mention genetic because I am SURE his dad has is it. My bed is even shaking from it RIGHT NOW) And because he has a neurological condition it would make PLM kind of exaggerated.

Because of his chronic lung disease and history of prematurity she wants to rule out Sleep Apnea by doing a sleep study but she is almost certain she is correct on the PLM diagnosis. So on Sunday, Tyler and I are sleeping over. That's right. She wants us in and done with his study before we do his Phenol shots with Dr. Gooch. ( In December )

For the first time in a LONG time I felt we had some kind of answer and someone who isn't and DIDN'T blow off his sleeping as " well sometimes kids don't sleep through the night" She specifically said, your child should be sleeping through the night by age 2. If not you should have them checked out. Plus our child is on a sedative. YES a sedative... and one that is NEVER used but in a hospital setting.. and he is on the HIGH dose. She wishes the doc she practices with for adults took our insurance and she would have done double sleep studies.

I HOPE HOPE HOPE that we have answers that will help our child.

Sleep=developmental strides.

We need those strides right now!


* post to look forward to- communication ( revisited) and what we are finding with his sensory issues....* WAHOO

PS. Dallas has Strep. How the heck does he get strep when he NEVER leaves our house? I mean NEVER leaves the house. I do the shopping, I do the outside of the house work, I do the therapy and doc visits and HE is the one sick... LIKE BAD sick.. like no complaint to go the docs sick, Like not well enough to shower, and in bed ALLLLLLLLLLLL day. He got sedatives tonight to... LOTS of them ;)

Shriners Hospital

I can't begin to describe my love for this place. I have mentioned it a million times but yet again it doesn't cease to amaze me. I am so thankful for Shriner's and the people that donate their time and money and give donations to serve children.

Today was our orthotic fitting and our speech evaluation. I was SOO proud of Tyler for being SO good. we talked about it before we got there and he was pretty good. The orthotic guy is NOT Brett but he took the time with us and did what he thought was best. Because we couldn't see any markings he was pretty sure that the kiddie gaits ( the 3K braces) are the cause of his sores on his ankles and not the SMO part of the shoe.

No adjustments were needed but he was impressed with his OTHER orthotic guy and the quality of the brace. Seriously I can't tell you enough how much we appreciate Brett, his time and Shriners for their amazing employees.

We then went upstairs for Ty's evaluation. We were early since they didn't have to do much for the braces. The upstairs of the "hospital" is a huge play room with luv sacs, TV's, a basketball hoops, balls, climb on toys and a few ride on toys. Ty was pretty OK with the wagon.

As we are going around the top floor of the play room we keep getting interrupted by the worker in the school. She was determined to get Tyler into the school room ( the room they have set up for the kids who are in for a long time.) and to give him a coloring book. Come to find out an anonymous donor donated 3000 boxes of crayons and a few thousand coloring books. She was so excited to give them to Tyler.

We then went over to the PT, OT room and waited for our speech lady. Ty loved playing all over the equipment and had a great time walking up and down the treadmill. He thought the was pretty cool walking to the mirror and waving at the other Tyler.

The speech lady rocked. I really liked her. Ty had a mini meltdown when we started and wouldn't let me talk to her. He wanted books and all of them. He was pretty good. But after awhile we found it would probably be better if I left for awhile. He didn't cry when I left but kept Blankie over his head for a while.

They have an observation room so I was able to watch him and was pretty proud of how well he did. The consensus is YES we need speech . We need it badly and Shriners will provide it free of charge. ( seriously there is waiting lists EVERYWHERE else and our insurance will only pay for 12 visits)

A few more things that she threw out there was a motor planning issue. Meaning the part of his brain that was damaged makes it so he understands everything he is being told but when it comes to expressing it and when he is looking for the right words or combination of words the slate is blank.

Another theory is that his muscles in his mouth are not right. A lot of kids with Cerebral Palsy have a speech issues because of this. They are gonna start working with some of his muscle issues and see how and what comes of it.

And another part of the puzzle is apraxia. Though true apraxia you cannot have any other medical issues ( meaning that if you have anything else wrong with you... even asthma or a medical condition or developmentally delayed) it cannot be considered TRUE apraxia be part of the problem. Apraxia kids can't seem to get the words to connect. So they may say "ba" but can't put the "nana" with it. Or they will omit certain sounds. For the last month we have really worked on getting ANY sound out of Tyler. We have tried just the sound of the letter. Our house and our play is getting kinda funny. It seem to be working and sounds are coming. But apparently not the right ones. We need Vowel sounds. If we can get the top 5 vowel sounds we are looking at a promising but LONG LONG road to get words.

They will be helping us with a communication device to see if we can't get the brain holding more vocabulary on the hopes that at some point he will make it come out.

We will be getting speech once a week there and 2 times a week at school. Then we have homework from private speech to get more sounds out. We are really hoping that we can get some more communication out of Tyler. At this point I am not sure how fully frustrated he is with his communication as much as I ( and his dad) are. there are so many things we want to hear that i think we took for granted '"thinking" we would hear as he got older.

We are happy with Tyler and how well he is doing. We knew it would be a long haul and I wish we knew earlier just what that little hole ( OK... its not really little) was going to do for his growth and development. How I wish I could take away the hard.

HOLY COW!

Communication is kind of a problem in this house. I think there are so many times that there are sometimes when the frustration of our lack of communication is so non existent that I can't help but feel some what sorry for myself. And it isn't me that can't communicate!

A glimpse into what I mean before I get to the holy cow part: Yesterday Tyler got up at the butt crack of dawn. Like 3 am. Not kidding. He was happy, mom um no! He had PT and OT yesterday as well which is a total throw of his schedule. He is not that set on schedules where he freaks. In fact I am not even sure he knew it was not the right day. What threw him off was the new contraptions he is to wear. He only had to have them on an hour. While getting on his shoes he was crying and crying and crying. His dad got him calm and the trip to PT was not as bad as I had anticipated. He was fine. He wouldn't let me leave him at PT which is abnormal but otherwise he was fine. He walked for Rachel and played his game for Jackie. He was allowed to take his shoes/braces off on the way home.

He played all day with Corine ( his respite lady) and we knew hew as exhausted. He fell asleep on our bed way late. We woke him up at 6 pm and bed time is at 8. He is a bear when he wakes up then compound his lack of verbal skills and you can only imagine the frustration he has. Dallas and I together couldn't figure out what he wanted. Finally we got him to sign SOMETHING. He wanted water, pool and something else. But he signs PULL not POOL. But it means the same thing to his ears.

So needless to say, communication is huge.

His speech is getting cut in Utah and he has been out of speech here for about a month. It was so hard to get use to the idea that he won't have it. He needs to talk. He needs the therapy.

While we were waiting to get our braces I thought I would go through the " Can you say this game?" We have been super working on just the basic sounds like Ba, Da, ta.. you know the stuff your 9 month old says.

He will say Ma or mom fine, and we FINALLY got him to say Ba. It was huge. We made a huge deal out of it. We let him be the praise junkie he is and then we moved on to something new. Those that know him know he won't say Da or dad at all unless it is by sign. Sign is fine. It is nice to see he KNOWS Dallas. But hearing it is way better.

SO, in the middle of a nasty circle K bathroom ( I really really had to go and Bret was still closed) he wanted to touch the floor. I said "ew no. Its Dirty! Can you say Da da Dirty?" SERIOUSLY we do this ALL day. When he wants something we say can you say "Fo fo food." I am sure people think we are NUTS. He looked at me and smiled and said Da. I gave him the praise junkie YAY and asked again. And again, and again. I finally called Dallas but he didn't answer and was super excited.

I was afraid he would pull a Tyler and NEVER say it again. But sure enough when we got home he said Da. When I would ask him to say Dad he would say Da and sign dad at the same time. It was making his dad BEAM from ear to ear.

So HOLY freaking cow! He has a new sound.

Signs and sounds he is currently making: A glorious LIST for YOU! ( the big words IE computer are all signs or approximations of signs)
Da
Ba
who ( like owl talk who who!)
T sound
S sound
Computer ( Dallas LOVES this one)
Dad
mom
Elephant
tiger
lion
monkey
pull
pool
water
all done
more
food
yummy( this one is just a sound he makes)

I think that is it for now. As you can see it is not extensive but it is a START and we love that he is progressing no matter what the speed!

Botox... Not our friend

We have casually dropped the word BOTOX on the blog a few times. I am sure perking up those ears wonder why on earth Ty needs botox. Here is the quick explanation. The Botulism some how makes his muscles less tight. Not sure how it does it but it does. It allows better movement for him. It is repeated every 3 months or 6 weeks. It is not offered under sedation for him because he gets 4 shots.It is a little worse than an immunization. It is still super tough to hold him down for.

Today was BOTOX day in our house/ Dr. K's. Dallas couldn't go with us today so I was on my own. Ty is a tough tough cookie. He started out pretty good and was a pretty happy kid. We brought a video of Rocket and Little Einsteins for the trip. He watched and played until Dr. K comes in. He STOPS and shuts down.

She has his shots all ready to go, we do a little chit chat and she talks to Tyler. We put him on my lap and turn him over. She puts on electrodes and starts doing the shots. Ty is in Hysterics by this point. Not only does it hurt but he is in an uncomfortable position. He is MAD. MAD MAD.

He is crying and screaming and trying to get away so much that he has broken some blood vessels in his face :( As we got him ready for bed the red puffy blotchy stuff is apparent and the little red rash.



Botox is over. The day is over.

Icing on the cake, Yes I saw the mean comments on my face book over it. No, sedation is not offered here. It isn't suppose to be that bad. He gets 4 shots. BUT we got home and the speech we so desperately need decided that even though we have accommodated her schedule ALL summer she is going some place else to work. Sorry.

Waiting lists are quit long. We are back to square ONE!

Countdown to Vacation

Sometimes I wonder if visiting in laws. outlaws and parents, or whatever you want to call them, is really considered a vacation. In order to go I feel like I have to overload our schedules to make sure that everything got done before we go. And sometimes things just happen to land on the week we are leaving, making it a busy busy week.

To add insult to injury I just spent 4.5 hours reading a online driving course that had many typos and tried to insert humor. It even spent the amount of time you spent on a page. So if you were a fast reader you had to entertain yourself for 1-3 minutes while the timer counted down.

Today was the first day to start off our week. Dallas has had insomnia for about 2 weeks now. His meds for his insomnia are apparently NOT working. I, being the very supportive wife I am, have taken full advantage of his early morning rising to sleep in. Why not ? He is only getting about 2 hours of sleep and is up around 4 am. Just in time for Tyler to wake up. You read right 4 am. SOMETHING has to be in the water in this house.

We got the jeep back for about 3 days last week and had to take it back. A few things weren't working right so we had to take it back. Normally that isn't such a huge deal but this week it is a huge huge deal.

Because Dallas and I are going to be going to different places for vacation ( yes you read that right as well) we have a lot to do to get each other ready to head off to two different places. And because of the above mentioned insomnia today was a good indicator of how busy the week will be.

Dallas started the day with Ty around 4 am. Dallas sent Ty back to bed and he woke for good around 6. Dallas was nice enough to stay up and feed, change and play with Ty. At around 8 Dallas came in and Ty and I leave for the morning. We checked my mail and played and read books. Woke up D to head to his docs appointment for new meds and we got ready for our busy afternoon.

I feed Tyler at noon and hope he eats fast enough for us to get out of the house one. We have to be out on time because this appointment is a beast to be late for. We leave at exactly 12:58. We have to travel to St. Joe's in downtown Phoenix. I am getting super good at finding my way to 7th street ( or is it ave) and we make it before 2.. barely. Only we find that our appointment isn't till 2:30. Given the drama we had last appointment I was fine with being early.

*side note* While waiting in the waiting room you run into a million people. Because of the type of doc it is the disabilities of the people are usually very apparent. Today a really cute mom who's daughter had severe CP went from patient to patient introducing herself and her daughter and touching ( which I cringe thanks to the NICU mom in me) and being so nice. She sat next to Ty and asked what his diagnosis is. I told her and she was so sweet. She said she would have had no idea. That it was obvious to her that we work hard with him. Ty looked up at her and smiled and then waved at the little girl and the mom tried to get this little girls hand opened and Ty reached up and took her hand and danced with her. It was super cute..What amazing spirits they all have. *

The appointment got us in around 2:40 and only lasted about 20 minutes and we were out the door, with new appointments for botox in the works. We head out to the parking lot and head home. We stop at the grocery store for dinner and head home.

Leaving at one, getting home at 5. Day one

Tomorrow we have Physical therapy, occupational therapy and music therapy. I have to take the rest of my driving test. And some time find a way to get BACK into the dentist. The root canal apparently doesn't work because my tooth is killing me.

Wednesday we are having to head back into the city with a prescription for titanium braces and smo's. And to make it to our new speech time. Dallas also goes into Scottsdale but we only have one car. And I need to make it into the chiropractor.

Thursday is kinda a lazier day. But is our anniversary. So with all our week busy busy we are hoping to get out and have a dinner or something before we embark on our vacations. Did I mention I have to pack for 2 and make sure #3 is all set to go before Ty and I leave the valley of the sun......

Oh it makes me tired.

But 3.5 days to go. Weather better stay lower than 100......

UTAH (and San Fran for D) here we come...

Speech

Speech is such an ugly word in this house. It has been mentioned many times how badly we want to communicate with our child. It has been a source of contention many times between me and others. Its hard to explain what happens.

Tyler signs many words and usually we (meaning me and his dad) can understand what he wants. We got him to finally sign dad after he USE to say it. He now will only sign it. We have a handful of other signs/gestures that we know mean certain things. Once we explain them to others they can understand him.

When we started school we thought that being around other kids would help with his speech problem. That it would encourage him to be more vocal. While we heard more sounds and a little bit of animal sounds no words came out of his mouth.

We increased his speech and did private and are still doing private therapy. I take him once a week for an hour. Because of his need for being around mom we have transitioned him to being with just his speech teacher.

In February when we got his shunt replaced I called to talk to his teachers and therapists at school wondering why no one noticed he acted off there. For the first time in six months we found out that he was not making any sounds or making any progress with his speech teacher at school.

This was when the speech teacher mentioned he was snotty and wouldn't participate. I kinda of laughed and said " He is three. What do you expect." But I got mad. I sent a notebook every day and rarely got back any kind of feedback. I assumed he was doing fine. Communication came only when I asked questions. So this information was new to me.

I immediately sat down and went through books, puzzles, toys, anything that generated some sort of response from Tyler. I wrote out a long letter explaining noises, sounds, gestures and anything that he did when looking at certain objects.

The first day after that I got a response from his teacher. She said "Wow, we had no idea he would be this verbal." I thought for six months you got nothing and it didn't dawn on you to come and talk to me or call. I would have come in and helped you.

I was furious. But that hasn't really increased our speaking. When we got a failed hearing test everyone ( meaning teachers and therapist at school) thought this was the answer to his speech problem. Me and his dad rolled our eyes thinking that this kid can hear just fine. And sure enough we were right. Nothing was wrong with his hearing. He had his ABR done and not one bit of hearing loss at all.

This is were I started hearing from people " oh that is how my kid was/is" or " have you tried this" or my favorite " I am sure he says more than you think." Um nope. He really doesn't. In fact he makes more noises and sounds for me than he does for any one else. Not kidding. None of those things are comforting when you are dealing with a almost 4 year old. At some point communication is crucial. Speaking is needed to get your point across and to eliminate some kind of frustration.

We have been working on getting the beginning syllables out of his mouth. His private speech lady is trying so hard to get ba ba and da da out. All day long we have done something with speech. Him touching our mouths. Him feeling our throats. Me repeating and repeating ba ba ba.

After his bath tonight a most glorious sound. Ba ba

Cheers and clapping and excitement came. He did it again and again. Looking for praise. Clapping and cheering continued.

This speech thing is exhausting. It is a lonely world. Not just for me. But I can't imagine the loneliness he is feeling not being able to express himself and have us understand.

Speech

Communication

One word