"The child must know that he is a miracle, that since the beginning of the world there hasn’t been, and until the end of the world there will not be another child like him.” Pablo Casals
We got our casts off!! Hooray! The summer has been SO long. To top it off, Grayson is low on Iron. So the last few weeks have been extra hard.
We got to our appointment and got right in. We visited the casting room with Adam, the ginger casting dude. He was happy to see us with no more mold on our feet. He was especially happy that no more water was in our around our casts.
And the saw was incredibly loud. Grayson was a bit not OK with them on his brothers legs but it was cool to watch them take it off.
That is Adam, cast dude, cutting off the nemesis of our summer. We were hoping and praying that there was no more mold.
When we got his casts off we looked at his STRAIGHT feet.. that is right. Straight feet! And then started pulling off the other gaze that we added on his REALLY gross feet. When we got to the tape, I knew some thing was wrong.
Casts off both feet. Steri strips left to look under.
The black stuff is the mold that left a black/green stain on his feet that hasn't come off yet.
The black/green is the mold on this foot as well. It hasn't come off. There is still some left on his skin.
This is where things got a bit interesting. The steri strips were coming off a little and this gross GREEN thick stuff was all over his steri strips. Adam, the ginger worker, went to go get the doctor to come and take a look at it and yep. It was just like we thought. INFECTION.......
Steri Strips were taken off and it was GREEN
Iodine was out around it and we washed it off. It was still weeping really badly.
This is what we are left with. A gaping hole in his leg that is nasty and gross and runs the length of his bony shin.
We took X-rays an his legs look amazing. His X-rays looks amazing. The surgery looks amazing. But his sore looks awful. I asked if it was because of the mold. She didn't come out and say it was my fault but because I let him get moldy feet it IS my fault. So the mom guilt has set in. But I am the wound care lady. And that means I am the one that gets to rip off a band aids on his feet. It hurts him. It hurts him and it breaks my heart.
After our appointment we headed off to the Orthotic place that makes our braces. They put back on 2 casts... YEP another set of casts. And took them off - HOORAY! as fast as we put them on!
Tyler was pretty patient and Grayson LOVES this office. He has THE BEST little boy toys in the entire world. Grayson never made a peep for the entire time we were there. He was great.
It feels good to have his feet off and he does get to shower. But no scrubbing his legs. I pack his wound 2 times a day. He is on an antibiotics 4 times a day and we go back in a week. A week for braces and then a visit with orthopedics and hopefully get the clear to start walking again.
This has been such a hard summer for us. We are glad it is almost over!
We see A LOT of doctors for Tyler. The course of action for a child with cerebral palsy really doesn't vary by TOO much. Meaning there are only a few things that you do as treatments.
Treatments depend on the Type of cerebral palsy that you have or are treating so the ones I know about is Spastic diplegia. Which is the type that Tyler has.
Most spastic kids are treated with Botox and then escalate to other things. We have gotten phenol and at some point we will need the next step.
Last time we were in the Physical Rehab docs office she said that they would like to do botox in a few spot on Ty's arms and phenol in his legs. She said " I need to go see what your insurance company will cover before we make a treatment plan."
RED FLAG: If our insurance doesn't cover botox ( which they require an appeal) then we can't treat him with that because our insurance won't cover it.
Even if it is the course of treatment he needs if the insurance decides they don't want to cover it the they don't. That means I am not in control of his health care.
Today, I had my own "insurance" issue.
I was taking the depolupron shot and the pharmacy that provided it to my docs called last week and was setting up my next dose.
We went in today for that dose. And they were ready to give it to us. Instead we opted to be in control of our health care and between Dallas, our doc and Me we opted to not take he second shot.
When we got home, we got a call from the pharmacy and they said that they weren't going to be sending the second shot because we have a balance on the first shot. I explained that we have the rebate from the makers and it is a 85 dollar rebate leaving the bill 15. They wouldn't send my second shot for 15 dollars. How are they in control of me getting that shot. Is it NOT me and my doctor and MY body?
I was medically in menopause. They needed to keep me that way for another 3 months but if I can't afford it then I guess my body goes back to being sick. Incredibly sick.
It seems that the insurance company and the people who are determining our health care. Even if we are needing that service or not. We seem to just not be able to get it because we can't afford it. So should Tyler NOT be given botox because our insurance doesn't think it is a good idea but his Doctor does?
How are you in control when they are determining what they cover?
PS. according to the pharmacy that provides the shots to my doctor, the shot he had ready and drawn up for me "must have been a sample" and they have no idea where he got something to give me. Which means that the shot was 7 grand and no one knew where it came from. HMMMMM
Coming from warm and extremely HOT Arizona the cooler weather was so nice and so cool. It was great. We enjoyed going outside and playing and having Ty's birthday party outside. It has been amazing to see the fall weather and seeing the leaves change.
We have been diligent in watching the weather to see when to change from a jacket to a coat. When to put on long pants for Tyler and keep them on. When to spend the day at the park or when to bundle up in a blanket and stay in bed. But we were SHOCKED to see the drastic drop in temperatures this last week.
While Dallas and I both grew up here we have become accustom to the nice warm, and HOT weather we had there. Tyler has never been in this weather ( that he can remember) he was only one when we moved. He spent one winter here and we came and visited for a few days. This was the first time that breathe taking wind and snow has been in his world.
The snow didn't start to fall till he was getting ready for the bus but when it did fall it was a half blizzard. He would go watch and ask to go outside. He wanted to touch the snow, feel it and most of all THROW IT! He was having such a good time.
* Side note: We found Barney Christmas and he has been watching it almost non stop. They of course have SNOW and that takes him RIGHT to the window pointing and jabbering about the snow. You should SEE him dance and sing to the 12 days of Christmas~*
For the rest of the week Ty has been asking to go outside. He has been eating the snow (GROSS!) and he has been outside with no shoes and no coat and he has been out with a coat and till his cute little fingers were red.
Ty signing "cold." Look at his lips. He tries to say BRR!
His stool that he takes over all day long. Back and forth.
Telling Dad and mom that there is snow out there. All day he does this especially when he is watching his movie with snow in it.
Not sure that there is anything me and Dallas can do to prepare for the upcoming winter, but I am pretty sure a CUTE little Miracle is ready for snow, Santa and snowballs!
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.
What a week! We are still recuperating from the sickies this week and man let me tell ya! I almost didn't survive yesterday or Tuesday.
Yesterday was the first day that Ty did NOT get a nap. Oh my heavens. BAD idea! But by the end of the day not only was I sad that Ty didn't get a nap I was sad Dallas didn't get a nap. I was so over this sickness that I decided to just get up and call for a doc appointment for Dallas today and I didn't even get an argument when I sent the message to him with the date and time ( and NO I didn't tell him I sent it IM!) He is sick sick and having a sick husband and having a sick kid is no fun for mom. Plus mom isn't feeling so hot so we need a DAY OFF!!
Dallas has a sinus infection, Ty still has some goobers but seems MUCH better today and I just have a nasty cough... but man... CAN IT GO AWAY!
While I was getting Dallas appointment I decided to be ambitious and stop putting off the inevitable and make all our appointments for Tyler. Not kidding it was a TASK.
First up was calling the insurance company to figure out just what exactly we have coverage on, where, when and how.
The bonus in the situation is our insurance coverage is costly but amazing. We can get every specialist we had before ( minus our eye doc) and botox. Though it took some laughing at the insurance girl to get her to get it is not cosmetic ( haha!)
They have patient advocates that would call and get us appointments but they always take first available. Sometimes that is do able and some times I am not getting up at 8 to sit in clinic B. Clinic B is a disaster as it is... so I would prefer right after lunch.
Ty has an appointment with Dr. Walker ( neurosurgery) Shriners and that is 2 appointments plus orthotics so we will be there ALLLLLLL afternoon. We will see Dr. Gooch there and then we will see Dr. Gooch in her office ( sort of) Dr. Gooch does botox and rehab stuff. We will see Dr. Peterson for eyes and I am not sure about him. I have yet to hear anything and will have to see what Dr. Nagle has to say. We see a neurologist and our Pediatrician. All of these are spanning a month!
We are getting Speech set up and will be starting around the 13th of October. It should be on Monday sometime and will be a lot of work on mine and Dallas part but we need it. So sacrifice it is.
It is nice to feel a little more settled. Now I just need a part time job that I can help with our massive cobra payments.
4 years ago today I was sitting in a hospital room wondering what the future held for my new little family. Wondering what dreams were going to come true and wondering if I would ever get to take home my son. This day brings forth so many emotions. Not the anticipation of a happy, chubby, screaming child. But of sadness, fear, and extreme LOVE and faith.
Here is our story. Four years ago I was laying in a hospital bed being told that I was going to have to deliver my son. I was told not to yell, scream, cry, or even throw up.
My only thought......It was to early……
September 20th 2005 : I had been feeling really yucky all day. I had been up for most of the night not feeling well. Having some strange cramps and some strange discharge ( hindsight it was my mucus plug) There was something not right. I called my doctor and the nurse told me to take it easy and not do anything, that I was being a paranoid first time mom. I stayed on the couch watching TV and doing homework. Dallas came home early from work and he had to go to a job interview that night. I decided to go to work. I was sitting at work so no big deal. He was going to drop me off and when my shift was over he would come and get me. Big Brother season finale was on and we were gonna watch it together. I got off work and he was not there yet. I called him and he was on his way so I decided to walk and meet him. BIG mistake. I started to cramp that evening but the Nurse earlier said that if there were less than four in an hour then it was not a big deal. So I was up and down with the feeling that I needed to go to the bathroom. I couldn't go but I really had to. I decided to eat something. It all came back up. I keep getting sicker and sicker as the night went on.
We decided that I had a bladder infection and that we needed to go to the ER. We decided to go to Alta View so that Dallas and his Dad could give me a blessing. ( At the time they lived close by Alta View) Dallas went into the ER and told them that I was sick and outside so if they could help me. They took me into the Labor and delivery part of the hospital.
I had the most wonderful nurse. Her name was Windy. She had me take a urine sample and put on a monitor. The monitor didn’t pick up anything including a heart beat. They had to get the doppler out just to find a heart beat. I could feel Tyler kicking the whole time and knew he was alive but they couldn't find him. They figured I had a bladder infection. They were not in a hurry to get things moving knowing a bag of fluid and antibiotics would send me on my way. But it was more than that.
I was having a baby!! And it was too soon.
The room went crazy. Nurses were everywhere and doctors were called. I was laying there so confused and thinking that it was to early. That he was not really coming and they were wrong. They tipped my bed upside down and started me on Magnesium to stop the labor and gave me shots of steroids to help Tyler's lungs.
There was nothing they could do he was coming.
15 week early.
It was to early. I knew deep in my heart that it was to early. If he came now he would not make it. I would go home empty handed with a broken heart.
They called maternal life flight to come and get me. They got there and I was to far dilated to take on the helicopter. For two hours they sat there discussing what they should do with me. At that point they called pediatric life flight to take my extremely tiny infant somewhere where they could help him. You see, we made the wrong choice. We went to the wrong place. We went someplace that didn't take care of sick babies.
With me staying and Tyler going they decided to do a c-section at that point and do it without being in an emergency situation. My water had not broken yet. His feet were hanging out. He was coming. The nurse put in my catheter and my water broke.
It became an emergency situation.
As I was wheeled into the OR I had to leave the love of my life behind with no idea how or what the future held for our son. We loved him so much but had never met him. He was too soon!!! As I moved onto the operating table from my bed I had another contraction. Up till this point I had no pain medication. The anesthesiologist decided that I had had enough and didn’t even wait to start putting me under. The last thing I remember was them draping my belly.
Waking up I immediately asked for Dallas and they let him in and he told me that they were working on him and that he had seen him and that he was alive. Dallas had been watching them do CPR on our little son. I then went back to sleep. On the way back to my room I remember being wheeled past my parents and everyone telling me that he was beautiful. They were going to let me see him before they took him to LDS or PCMC. They wheeled him into my room. I couldn't really see him because I had to take my contacts out to have surgery. But Dallas gave him a blessing and I KNEW that we would be okay.
That day our family would be started that day.
Tyler Kenneth Brown, my sweet, amazing and miracle son was born at 1:24 AM on September 21st 2005. He weighed 1 lb 11oz. He was 13 inches long. He was life flighted by helicopter to LDS hospital where he would stay for 30 days. He would have one surgery, and suffer from grade 3 and 4 brain bleeds. He was transferred to have a reservoir placed for Hydrocephalus. He would stay at PCMC for 63 days. He would endure 2 more surgeries( resevoir placement and ROP stage 3) and many ups and downs. He came home one day before his due date…. December 23, 2005.
In four years Tyler has had countless surgeries. ( all since being home) *Feb. 14th 2006- Craniosynostosis skull reconstruction *April 2006 Emergency Shunt placement *May 2006 Emergency Shunt revision * Feb. 14, 2007 Total skull reconstruction *September 2008 Emergency shunt revision * Dec. 2008 Dental work * Feb. 2009 Emergency Shunt revision
We have done Physical therapy and Occupational therapy once a week for almost 4 years. Speech for 2 years. Music therapy for a year. He has started botox therapy where he gets numerous painful injections into his calf muscles. He had weekly weight checks for almost 2 years.
He has had a walker, 4 sets of AFO's, and every six months an in depth eye exam. He has six specialist we see on a regular basis and our regular pediatrician. ( and we were able to recently return to Dr. D and Dr. M) Dr. Marissa was one that I contribute my sanity to for one year and then some in the NICU and for weight checks.
He has had several diagnosis' including Cerebral Palsy, Low vision, craniosynostosis, hydrocephalus and nystagmus and a coloboma ( which is so incredibly CUTE!)
Despite all of this he is a GIANT. My previous post said I would change things. And I would. But only to make it easy for him. I wouldn't change the smile and the Spirit he carries with him.
He has changed my faith. He has instilled a knowledge of a Savior. He has instilled a power of unconditional love and a dying desire to make his life easier somehow. He has taught me that he will get up. That nothing will keep him down. The dreams of him running circles around my legs is just different than it was in my head. Now it includes limps, braces and slow moving circles but he was and has deified all odds. He has shown me that I don't know myself. I don't know love and that I didn't know how much he would impact me and my life.
On this day, four years after the emotions of the last 4 years are very real to me. I can still hear the beeps of the monitors and the feeling of anxiety when I see them bagging my dying child. I see them and hear them EVERY TIME I close my eyes. Yet I can't help but hug him every morning and think of how lucky I am. I can't help but cry when it is hard, and as I cry because it is hard for me I realize that it is harder for him.
On this day I can cry tears of thankfulness, devotion and complete and utter love for that little boy who makes my heart melt. For a smile that takes my breathe away...
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!
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!
A phrase frequently used in the NICU was that it was a Roller coaster. Some days were HIGH HIGH and others low low. Some days were just OK and others were fine. You didn't have the drastic changes in emotions all the time. Some days were so "OK" that it was "no big deal." The closer we got to the end of our stay the "no big deal" days were more and more frequent.
Often during the crazy time I really wanted to get off the ride. Like at the amusement park, as you are heading up knowing that the drop is coming, the anticipation is a killer. What are you anticipating? Was it the drop? Was it knowing at some point that there would be a drop? I don't know. I don't know what makes the anxiety flow.
It has been almost 4 years into our journey. ( So crazy to think 4 years) And most days the journey is fine. It is " no big deal." But with all the changes coming up the roller coaster ride has taken a jolting turn. What am I anticipating? What is making me anxious? What if I want off?
Dallas is not working for a company so the safety net of a nice set of insurance benefits is running HIGH on our list of anxiety. Ty HAS to have insurance. A lapse in insurance could great impact us for the rest of our lives. Because of his Cerebral Palsy and hydrocephalus a lapse in Insurance could result in him being considered uninsurable. Those conditions alone make insurance companies run for the hills. But without insurance we would surely drowned in the expense of an unforeseen shunt revision and even the day to day care of a child with Cerebral palsy. His botox, speech, physical therapy and occupational therapy, most of which is out of pocket expenses as seeing insurance companies don't always agree that maintaining a functioning body is applicable to children with CP, are sure to cost way more than anyone is able to make even without working on their own.
The long term care system in Arizona, though very broken, is a FAR better cry than what we are looking at in Utah. Because we do have a job the idea that we DO have some sort of income crosses us out for medicaid. Because of that insurance has to be done privately or through a company that you work for. Again, causing a stressor. What do you do? We are even looking at me going to work for a few companies that I worked for before in order to get insurance benefits for the family. I am happy to do so. I am just overwhelmed with the idea that we will yet again be facing no long term care options. We have had it REALLY good in Arizona. A broken system gave us insurance, Therapy ( of all varieties) and respite providers. While the respite was nice I am fine with taking care of Tyler. It is the other necessities of insurance and therapy that plaque my thoughts.
Though I am sad to be leaving those behind my biggest concern is getting him into some sort of speech therapy. Speech is a HUGE concern for all of us. A lot of insurance companies won't provide services to anyone who is just delayed. There has to be a reason. Like a stroke, or brain injury. So unless someone is nice enough to put his speech delay is from a brain injury then we are just out. We have been pointed to a few free ( ok one) free service but there is a waiting list. This next week we are looking at Shriners and what the school offers.
Though we are leaving behind some of his therapies, we are gaining family. Since Ty doesn't have any siblings and with no plans in the works FOR one then cousins, aunts and grandparents, we hope, are going to help us with some interaction on a pretty regular basis. That he can learn how to model those that are doing the things we want him to be doing.
We are looking at what the deaf and blind school has to offer. Though the actual school is to far away for him to be bused I do feel that they might have some services that will be of benefit.
One of the major stressors that invoked this lovely downer topped with upper was a call from a speech therapist that treats kids with Apraxia. She was given Tyler's information and based on his most recent evaluation and what he is doing right now she was giving us a "guesstimate" of what we have to look forward to! She said that general speaking kids that are not talking by 5 can still talk but generally have unintelligible speech. Meaning no one but their care givers can understand them. Causing "normal" society functioning to not be very... um easy. There are a lot of communicating devices that we can try but given that we are moving the testing for it isn't going to be as available.
While we feel as his parents that he will talk and that getting him to family and friends is the best thing we can offer. If we do that and do what we feel is right for him that he will be blessed.
What is really hard is how much as a parent we desire him to be the best him and someone who is telling us he won't do certain things makes you a the deficit. For example: Dallas and Tyler were swimming in the pool. We are trying to get him to learn new words or sounds. It seems that his mouth tries to form it and nothing come out. Its heart breaking to NEVER hear dad, or I love you. Yet in his own way we KNOW he tells us that he loves us. He signs Dad. He signs and loves both of us so much. It still doesn't make that heartstrings hurt less.
"The best and most beautiful things in the world cannot be seen, nor touched ... but are felt in the heart." Helen Keller. She said it perfect. At this point we want him to be exposed to EVERYTHING. Take it all in. Adapt it to his needs and hope in his sweet, larger than life way he KNOWS we love him.
He KNOWS... He knows he is loved. And he IS loved.
I guess after a down day yesterday and a GREAT day today we won't know know what the future will bring and what services we get BUT we do know that in his Larger than life way we want him to be LOVED and feel loved.
So, for now we are coasting. For now the up and down is gone. We can do it! I will stay on the roller coaster ride.. If only for a while!
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!
I honestly HATE my blog being private. I figure if I am going to live this I might as well share it. Of course there are always more precautions you can take in making your family safe but one of the main reasons of doing this blog was to help others along their way.
When I was around 25 weeks pregnant I googled 25 weeker. I came up with a Women's blog that had just delivered a 25 weeker. We were just embarking on our 25th week so I was entranced by this womens blog. Her 25 weeker was born just a few weeks BEFORE mine came. Little did I know that we would run the NICU journey together ( in different states of course) and see her struggles, triumphs and journey through her moms blog.
I still follow that moms blog. I am not sure she reads mine but I have her on my face book and I participate ( though in frequently) on some of the preemie groups I once was VERY active in. Desperately in search of some information, some idea of what our future held.
I have really tried to blog Me, and my feelings. Sometimes they get taken wrong by others reading and read as I am unhappy or negative or plain bitchy. For those who take it that way I am sorry. I would be happy to converse with your privately. To come to some conclusion as to why you feel that way etc.
I enjoy looking at my site meter ( Thanks Amy for upgrading me!) and getting the googled words that brought people here. MOST are words like Age of viability, outcomes of early preemies, and most important words are ways that I feel like I can help someone if they come across this blog.
Is it all fun and games. Not really. But it is our life.
Not a activity that goes by, or a time in church or even going into the grocery store that I have to make accommodations that another person may NEVER think about. For example : You put your 3 year old in the seat to sit down in the cart. So do I. We shop. You lift your 3 year old out of the cart. East as pie... Not for us. Because he can't move his legs correctly he gets stuck. It looks awkward and it takes some accommodations on my part. What shoes would be better to not get stuck? where can we do this awkward exchanges to avoid stares of "what is wrong with your child" from on lookers. I don't Ask YOU for these accommodations and realize you know nothing of that small accommodation.
We can't take a simple trip to the zoo without me thinking ahead. He can't see the animals. Unless they are close he is out. He is looking into a blank canvas. While your kid i LOVING the zoo my wants to love the zoo but can't see it. Not his fault. I don't ask you NOT to enjoy the zoo, it just takes me longer to get us the accommodations that we need to enjoy a trip to the zoo.
The blog link was changed to prematurity with love for a reason. All of our accommodations that we are making for our child are changes we are making for love. All things we do in our day is all about Tyler. All about him. Our whole world is Tyler.
We parent with love. We don't spank. We have made our entire day's schedule revolving around one person. What his therapy is, what school is, what swim lesson. Just like EVERY other mom. Then we get to parent the prematurity. We have horrific appointments, bumps in the road, Surgeries beyond understanding. Yet we still do it with love. And it is LOVE... Accommodation, appointments, stress, bad days, all of it is because we love him.
So, please take the blog with integrity challenge with me. Disagree with the issues but do it with kindness, not to be horrific and mean. I have had enough of that. I am issuing that same respect. Please, be kind!
This summer we changed swim schools for Ty. Last year it was a short session and was super duper expensive. I was super worried that I would find one in time. He really needs the swimming lessons. He is really good about water and he does a great job in the water. I want him to learn to swim because he can DO swimming. He is able to do all everything he wants in the water. His body moves the way he wants to in the water. And he is REALLY good at it.
We missed the last lesson because I got the time wrong. But this week we were right on time. I tried to explain to him that he would be going in alone like at school. He was fine and signed swim a few times. He understood what was going on. We got to his swim Teacher and I put Ty in and put my feet in to help him easy the separation. His teacher took him off. And the water works started.
The main instructor that was checking in the kids didn't like the idea of me staying there. She asked me to go in the main building or far enough way he couldn't see me. I was kinda sad that he was sad but other wise I understood. He is such a momma's boy.
First spin in the water with his new "coach." He seemed OK at the beginning and he was not crying yet. But then the water works...... so so sad! This is when he realized that I was no longer sitting at the edge of the pool and boy he was not having it.
He BOLTED. He hoped right on out and the poor lady was scrambling to grab him. She was going to convince him to stay if it killed her!
Even the ducks didn't do the trick. He was still sad. I wanted to rip off my Tank top ( I had come prepared to have to get in with the dude) but I stuck it out ... and the Lady got her stuff of and decided to help him get use to it. I was super impressed.
She got Ty going. She got him out kicking his legs and relaxing just a little bit. I can't imagine that you can't feel safe with someone you don't know or can't trust. I was pretty proud of my little dude.
OK so the crying was still going on. He kept saying Mom mom. Totally broke my heart. But KNEW he would do OK.
They switched and his regular "coach" took his turn. They had him kicking and moving like he was asked to do. He was still kinda sad though. And then.... He sat all alone on the steps when he asked and he was waiting his turn. He would clap for everyone and he " jabbered" to all of the kids. He seemed to be having a ok time. He did whimper a few more times as they took him down the pool and back but it will get better.
Tonight after a long day with our respite lady and Dallas being gone Ty and I took a shower and Dallas got him ready for bed. Ty has a love for the super sleuths. Its the newer version of Winnie the Poo. We have only found one movie ( and the musical zoo that he doesn't love) of them. But they are on Disney sometimes. Anyway, a month or so ago Dallas bought Ty a super sleuth shirt and I bought him some super sleuth Jammie's. He wouldn't wear the shirt forever but today he put it on.
He is such a happy kid MOST of the time. He is so much fun. He is smiling for his dad. His dad was snapping pictures trying to get him to do the funniest thing.
His pose getting ready to JUMP. He can jump on his own. But look at that face!
AND this is what we wanted on film. TA DA! He holds his hands out and waits for us to say TA DA! Then he claps and does it again. Jabbers to us with a full on conversation. He loves the super sleuths.
Days like today make me realize how much I am IN LOVE with the blond haired, blue eyed, bombshell that comes waddling into my room at 4 am to sleep with mom and dad. For the kisses, the hugs, the waves, the giggles. For the love, adoration and just plain unconditional love this kid has. I am so in love with him.
I have had no idea how to even start potty training Tyler. There are so many factors that lead up to NOT potty training yet let alone on how to get it to work. Knowing he is almost 4 and still in diapers is kinda crappy. I feel like people look at us weird because we are still diapering. He is getting to big for "regular" diapers and only have one more size to go before we have to do something else. Luckily he is still kinda little so we are lucky that way.
As I have read about other people with preemies start potty training and it has taken a long time. These children generally have kids with nothing else going on ( or very little.) Because Tyler's prematurity is a little more than just little kid etc and it involves his arms and legs he can't get his pants down on his own. Which leads to the first set of problems. How is a kid that can't pull down his own pants suppose to go to the bathroom if no one is around to help him? He can't. Its an impossible task. Second problem is that he can't talk. How can a kid that can't talk tell you he has to go to the bathroom? He can't. Again an impossible task.
Ty doesn't stay dry for 2 hours at a time. He has gone without a diaper for a period of time so we could "watch" how things transpire. He holds it. He holds it and then he leaks and then he stops. After a few minutes he then just pees. We are aware he knows he is peeing or he wouldn't stop. BUT then what do you do? When asked he just says no. ( The only real word he knows) He never fights you to sit on the toilet.
What we have been doing is trying to get him to wear underwear over his diaper. Nothing big but for him it is HUGE. He has only allowed us to put them on once. With over praising and what not he was happy to wear them and wore them over night. ( again over a diaper) He will wear pull ups and understands that they are not diapers and doesn't sit down to put them on but again back to problem number one. He can't pull down his pants alone. Defeating again the purpose of potty training.
Well, we have asked and asked and asked. Sat on the toilet every single time I need to and NOTHING. Not even a small drip of tinkle. Well today he spent most of his day out in our little pool on the back patio and he was diaper less. Dallas noticed the holding and walked him into the potty. After reading a Ernie is to big for diapers book and Here comes the potty train, Dallas and I got a BRILLIANT idea of bringing in his portable DVD player. In comes Barney and Ty sits... and sits and sits. I decide to pull out my camera and practice with my new lens. ( Not great with closer shots but it was fun to practice anyway) and got a few cute shots with Ty and his DVD player. Decided to check... and GUESS WHAT... WE HAD PEE PEE!!
With HUGE claps and shouts of joy Ty gave us each high five and put on a pull up and off he went. He was not interested the rest of the night but we have some cute sitting on the potty pictures.
For your viewing pleasure. Ty went Pee Pee.
( No it was not my lens or camera. He really has red eyes. He had been in the water all day)
The rest were kinda fuzzy. I was getting ready to change lenses when we realized he had peed. I guess it is one success hopefully we will get more. Here is to PEE PEE!
Yesterday was the day that the doctor confirmed that our son ignores us. That's right folks, at the ripe old age of 3 Tyler has selective, not listening to you mom and dad, hearing. He beat ALLLL of us.
The results of the test were actually really good. We, as his parents, really felt that we were doing this to see if there WAS hearing loss on some level because we have such yucky speech problems. We KNOW he hears so we weren't worried about them saying he can't hear.
Well, the confirmed perfect hearing was no shock. It came at great relief. But also major disappointment. Don't get me wrong I didn't want Tyler to have hearing loss. But I wanted there to be an answer as to why we lack speech. NOT communication but SPEECH. There is a difference.
The Test done today was called an ABR. (Here is the boring medical stuff so I can show up on google searches, skip if you want.)
Auditory brain stem response (ABR) test
An infant ( in our case a 3 year old) is sleeping or sedated ( for Tyler he was under anesthesia) for the ABR. An infant may be sleeping naturally or may have to be sedated for this test. Additionally, older, cooperative kids may be tested in a silent environment while they're visually occupied.( yeah didn't work.... hence the test today) Tiny earphones are placed in the ear canals. Usually, click-type sounds are introduced through the earphones, and electrodes measure the hearing nerve's response to the sounds. A computer averages these responses and displays waveforms. Because there are characteristic waveforms for normal hearing in portions of the speech range, a normal ABR can predict fairly well that a baby's hearing is normal in that part of the range. An abnormal ABR may be due to hearing loss, but it may also be due to some medical problems or measurement difficulties.
So we know he is processing, hearing and using the information. Yay for Tyler.
Now to find out where to go next. There has to be an answer somewhere. Till then, we will just sit back and enjoy the cute signs and gestures he gives us. He is very smart and has been doing really well.
We are very proud of him. He is our hero.
The aftermath of the anesthesia is pretty nasty. He screams and cries and kicks and gags. Once we got the nurse to go away we got him calmed down just fine. She came back to take off the IV and that sent him into a fit again. After all the surgeries lately we have noticed a little increase in irritation with the tape. It left some nasty marks.
We went to sit till they discharged us and he wouldn't stop crying until the bracelet, and the band aid from the iv out. After that.. perfect. He came home and played all day. He has owie's on his ears but otherwise he is fine.
Here is the many faces today of our Hero:
The nasty stuff on his face is chocolate. He got a donut at the store because his mom is a sucker. The mark on his upper cheek is from the tape. I really think we need to remember next time to have them use the tape they use on allergic kids.
The day you were born was the day you became my hero. You are the strongest, most loving and most amazing miracle that ever entered my world. You are an inspiration to everyone who meets you.
As we have watched you grow, you have done more than you were ever suppose to do. Me and your dad KNEW you would do them. Our Hero has never given up and has pushed through it and done it all.
You make me smile when you hula dance with daddy. When you ask for ice cream because Barney has one. When you give your daddy kisses because Tiger gives kisses. You keep my heart in you hand when you climb up on your daddy and you fall asleep. When you get home from school and head right in to his office, even if he is gone, and sign dad and fish.
I fall deeper in love with you when you pretend to be a flamingo. Or when you take my hand to show me what you want. I fall deeper in love with you when you sit at a table like a big boy and have "conversations" with your daddy and I without saying a word. I love you when you smile that smile and you make that belly laugh. When you lay down ad raise your feet and ask for piggies. When you take rocket with you so you can be brave. When you ask for mom to trace your numbers with you. I love that you work so hard at therapy. That you work so hard to try to say words and communicate with us. You walk like a big boy and you are the best big boy I know.
How can a spirit like yours be trapped inside that little body? How could that little body change me so much. YOU ARE A HERO.
We know that things will get hard. We know that things will hurt. Remember, you are a hero and you will always be a miracle. You will always be my little boy. You will always be my hero.
Tyler.... A hero. That is what you are. A hero. Courage doesn't always roar. Sometimes, courage is the Quiet voice at the end of the day saying.." I will try again tomorrow."
