Potty Training and urology- Cause that's how we roll

We started trying to potty train Tyler before we moved from Arizona. ( At least 2 years!) We used our respite person to assist and she would valiantly take Tyler ever 2 hours to the potty along with Dad and I for a LONG time. When we moved we kind of slacked due to the stress of moving.

When we tried again right after we moved Ty was so upset over the toilet. We would stay dry for a while but then we would just dribble. So he was wet all the time. It was like he knew he was in underpants he wasn't suppose to go to the bathroom on the floor and he would hold it. ( hooray! right) But no success in the potty. We stopped again hoping a few more weeks/months would work.

Last year I went to the district held special needs potty training class and I got absolutely no tips that we beneficial. They were awesome for people who have kiddos with sensory issues or Autism but kids with CP just didn't fit the bill. The special needs preschool invited the kids' parents who were not potty trained in the district. It was really frustrating.

So we gave it another go. FAIL, FAIL, and FAIL! It was so frustrating from the parents perspective and from Tyler's. It caused some massive toilet aversions and he was NOT interested at all. In fact it made it even worse. He wouldn't even sit on a potty.

After a few words about our potty issues and even MORE frustration from Tyler, ( and mom and dad) I called our pediatrician AGAIN begging for a referral. She gladly sent us to a Urologist at PCMC.

Our appointment today was amazing. She even offered to write a letter/note for others to understand WHY he isn't potty trained yet and that it didn't need to be brought up. Her first biggest suggestion was to get EVERYONE other than D and I to stop talking about the potty. There will no longer be any talk about him not being able to do something or attend a function or not go somewhere because he isn't going to the bathroom.

The next step is getting him to just sit on the potty. He can earn tokens to get movies or treats or outings. No pressure just get him to not hate the toilet. ( They call it toilet aversion. Apparently they even have therapist at PCMC that works with kids with chronic constipation) We will also start working on BM stuff but mostly we are just getting him to stop gagging and freaking out when we sit on the toilet.

In a few weeks we are getting an ultrasound of his bladder and kidneys and the NP is working with us Via email. ( I LOVE technology!) If others want to discuss, not include or be upset over Tyler not going to the potty feel free to email me for the docs information.

An interesting fact: The muscle that is used to "hold" urine works on a reflex around every 2 hours up to 3 years old. After that the muscle is a reaction from the brain. When you have cerebral palsy the muscles don't get the message from the brain correctly. So usually it takes kids MUCH longer when the muscle isn't getting the message.

Well Child Check

My baby has graduated to be a well CHILD and not a well BABY. Where has the time gone. I can't believe he is 5! I had his appointment just a few days after his birthday. I was not looking forward to taking him because I knew he needed some shots. I had "delayed" them, not because I didn't agree with the shots or I was worried he would get sick but because I didn't want to deal with him and the shots.

But, I love his pediatrician and love her Nurse. Plus we hadn't been in for a really long time. They hasn't seen that Tyler could talk. ( They are on my facebook but when you hear he is talking, until you HEAR it, it is hard to believe.)

And the BIG reason. I do not/did not want to hear that Tyler was to little. So I was crossing my fingers that we were not to little and that he wouldn't scream through the whole thing.

Off we went. Ty was really good. He walked the whole way. When we got there they asked what his name was and he answered "My Tywer." Then the nurse came out. He nicely stood up for the weighing and then put Mickey Mouse down for his weight. We couldn't get a blood pressure because that caused MASSIVE meltdown.

As we went through the list from last well "baby" Tyler has really come a long way. She asked Tyler if he knew his shapes and he told her all of the shapes and the alphabet and then showed her he could jump.

The good news was short lived and we really had to discuss his weight problem. I am glad he is not overweight, but really I cannot get this kid to eat enough to gain weight. He is picky, he won't eat even if he is hungry if he doesn't like the food. He won't drink milk so carnation is out of the question. We do EVERYTHING we can short of a tube.

He is so stinking little. He is in the 1 percentile for weight and 3 percentile for height. So he is short and skinny. The concern they have is that he is WAY skinny. Like think little weight lifter. All you can see is his muscles because there is NO fat on his little body. You can count his ribs and see his shunt tubing. He has dropped 4 pounds since July.

So Ty gets to be on weight watch AGAIN! The good thing we didn't have to go on search for the flu shot and we have officially gotten all of our shots. We need to see all of our specialists( think 6!! Lucky us!!) in the next 6 months and schedule another round of phenol and some casting and a CT scan. We are hoping now that Ty is talking the eye exam will be somewhat better. Might not be as traumatic as it generally is. (We still get followed every 3 months.) Oh and we can't forget the dentist.

ROP and Vision 2010

Today was Tyler's eye appointment with his previous Opthamalogist Dr. Larsen. It has been almost 2.5 years since we have seen this particular doctor and so Tyler has done some growing and changes. But not to many growing and changings that we are horribly concerened.

Most of the appointments for him right now are maintenance appointments. Meaning we have a baseline that we must keep in order to be deemed healthy by that particular doctor and to extend our visits from once a year or 2 times a year to longer. At each specialist there is something in particular they are looking for.

The picture above is Tyler waiting to do the cue cards that help identify what acuity he can see at. These are pretty cool cards and Ty had a great time pointing to the stripes. As they get smaller together and harder to see you see him pointing at the pin hole that they tech looks through to see if there is actual recognition that they see it. When you see that you have a few more cards to go and he isn't seeing them sometimes you feel a little more sad. But Ty did really well. His acuity is somewhere around 20/260.( He can see an object at 20 feet that I can see at 260 feet) That is bad... really bad

The acuity charts are not done in the exam chair. They are done sitting by me in a regular chair. Tyler is then moved over to the exam chair. And yes... this is really what he does. He gets so so so so sad. And he knows what is coming. They put on a movie for him where they do the eye screening. So as you can guess, he can't really see that far. But we moved fast when he thought Lighting McQueen was Roary the racing car.

A long with the idea of the REALLY in depth exam you have all the scary equipment you would see otherwise in a eye exam room. But to a blind 3 year old you can't help but want to be curious and scared at the same time. So I usually let Tyler explore his surroundings as we get use to them, he lightens up until the doc comes in.

The Moran eye center is one of the best in the nation. they have all the high tech things for them to use and for us to get the best care ever. The above piece of equipment helps test glaucoma and the below helps put the images on the screen according to what the person can see.

Along with all the instruments, computers etc, we sat right there while they dialed in and pulled up Tyler's last CT scan he had at a different hospital, the dictated report and all the information they needed for Tyler.

Now for the boring but mom finds interesting part:

The image taken is me sitting in the exam chair and with the no zoom and no editing in any way picture is what Tyler can see. Meaning with his glasses ON he can only see objects 20 feet ( or the space between the chair in the eye room and the chart) that are this large. Anything smaller he can't see. His prescription is a -9 and it hasn't changed in a while.

I still didn't get how or what he saw or why it was so hard for him to wear his glasses. So settle in!

My glasses are -5 and -6 respectably but I have a astigmatism which means I don't have clear vision and it is kinda messy. I can't see pretty much anything. I see shapes, sizes, outlines. I see what Tyler sees with his glasses.

His eyes are not being correct to see what you and I see. His are being corrected so he has some vision. He will not be able to see "perfectly" but will have to have what he sees enlarged in front of him. He needs it enlarged 260 degrees or almost 300 times larger than regular print.

The exam to get his prescription is VERY traumatic, his eyes get dilated and then he has to be literally held down with his eyes pried open. I am the one holding he is the one moving and the doc is the one dodging the bullets of his feet. It isn't pretty. Ty is WORN out over the exam. He can use a magnifier but really that makes his brain work harder to see.

When I take my glasses off I can see my hands up to a certain point then they go fuzzy. That is how his are but his fuzzy if closer and his fuzzy is harsher. So from ten feet away the only actual thing he can see is the Door handle the rest is just a blur and an outline.

Ty's doc is getting some stuff ready to send to his school for better modification for him. And now we can answer some questions.

Like why at Chickie cheese when it is loud and a lot of people and things going all over can and does he get overwhelmed? The answer: because he can't SEE what is going on. His ears, which are fine, can hear but his brain and eyes can't see it.

Why when he gets to the top of a play ground place does he freak out and won't go down the slid? Answer: He can't see the ground. He doesn't know where he is going. He can't see me, he cant' see familiar.

He doesn't like to wear his glasses because we have always brought his world to him. He has no peripheral vision at all. He only has his little big of central vision that is there. It may get a Little better but most generally this is it.

Long term: He will NEVER drive a car.

* These are not NEW findings for us as parents, just better information as to how and what he sees. He even Showed me what he could see using what crappy vision I had. It was more for others who are still "learning" his visually extent."

Vision for 2010!

Tyler has a disease called Retinopathy of Prematurity that only effects children that are born BEFORE 32 weeks. Low Birth weight and gestational age play a HUGE part in this disease. Some are only mildly effected but for us that isn't the case.

Tyler was diagnosed close to his go home date with ROP stage 3 PLUS disease. This advanced stages of retinopathy was "discovered" before retinal detachment so he does have some sight. He is at risk for retinal detachment for the rest of his life.

Eye exams for kids Tyler's age are not pretty. Because he has them often he HATES them. He screams and kicks and freaks out. His eyes are dilated almost every time and we rarely get any real answers. Meaning because of his other delays ( especially in speech) we still do not know what he CAN see and what he can't see. It is basically a educated Medical guess.

Visual impairment is something that we feel is a huge mystery only because we don't know the extent of what he can and can't see. Tyler has nystagmus as well that is from head pressure that has ruined his optic nerve. He also has a coloboma which makes his eyes let in to much light. It can make your vision even worse. ( the picture above shows that his special eye, which is a coloboma)

For those who are interested ( or don't think that we have it "bad" or they have it "worse") or have questions regarding his ROP please email me or let me know so that we can bring back answers for you. His appointment is tomorrow at 1 if you would like to go. Tyler needs to be seen every 4-6 weeks at this doctor so more appointments will be coming. His Doctor is more than happy to have visitors with LOTS of questions.

Sleep Study- in pictures

The long awaited sleep study was last night. I am exhausted tonight so that explains how well it went. Right!~
We left extremely early for the sleep study because it was snowing. No it was a fast moving blowing and freezing semi-blizzard. Dallas and I decided that I would take Tyler alone because 1) Dallas has his own set of sleeping issues. 2) What was the point? There is only one other bed and if he stayed home I could sleep in the morning ( after) and 3) why pay for 2 cars to drive up there. Totally pointless.

We got there pretty early and the lights were off and the door was locked. I was horrified that driving up there, keeping Ty up past his bed time and then not having anyone show up was going to make me SUPER mad. We need to have the right meds before our procedure in December.

At 8:30 the tech showed up and we were the only ones there for the night.

The rooms were very nice but the beds ( though they looked nice) had mattresses far below hotel standards. I mean, if the room looks nice at LEAST make it a pillow top. But Ty was pretty chill at the beginning. He was watching a movie and laughing until the tech came in.

I have no photos of the ordeal because it required pinning, sitting and basically holding my kid down in order to get him to allow the tech to get him to put all the crap on that they need. I seriously can't fathom how the heck they expect anyone, kid and adult to sleep with this crap on their bodies. We were lucky to get his meds in before he was crying in hopes that he would crash as soon as the stuff was over. It took about an hour before he finally crashed.
(Sorry about the blur quality but it was dark) That is the amount of wires that were stuck somewhere to his body. Not kidding. He had 3 on each leg/calf. 4 on his back 9 on his face 4 on his head, 5 on his chest and 2 under his nose ( not pictured) They had a nasal cannula and a nose pressure thing ( the 2 on his nose) that they had to wait for him to be deep asleep because they knew he wouldn't tolerate them to put it on before hand. And on his foot he had a foot probe for oxygen and on his chest 2 straps. Yep.. and he was suppose to sleep. Oh! and a microphone and a monitor for his heart. Yeah not kidding

So of course the results aren't in yet. He feel asleep around 9:45 pm and slept soundly till around 11 or 11:30 where he was up around 4-5 times ( not sure how many, I lost count around 3) and at 4-4:30 he got restless enough he was sitting up. And at 5:00 he signed all done. I moved into mom cope mode and moved him into my bed where we put on a movie and "tried" to sleep and the tech came in and said it was pointless to keep him there if he wasn't sleeping and we then combined efforts to pull off the 30 MILLION probes on his body. Then off we went. He cried taking them off almost as much as putting them on!

We went to see if Smith's was open in hopes to score a donut but they aren't open till 7 and it was only 6 so we went to McDonald's and got us a yummy Breakfast ( I know, so healthy!) but it was such an early morning. Ty and I ate ate breakfast in quiet. Then watched a few movies before we went and bugged Dad! At around 7:30 I couldn't keep my eyes open any more. Dallas saved me and took over the parenting duties and I slept ( with weirder dreams than I care to admit) and I resumed the parenting duties a little later.

Through out the day Ty didn't nap and tonight he was DONE and so were his parents. I think emotionally I was done as well. As I was talking to Dallas last night I thought " This really sucks." I honestly wish a million times over that we didn't have special needs. That our live was mundane and boring where the most dramatic thing that happened was so ordinary that people like "us" look in envy. Instead, I am thankful what I have learned but really wish for Tyler's sake and my sanity most days and Dallas sanity, that just once it would be "normal."

We are so thankful for all that Tyler has taught us. We can't express how much he means to us. Special sucks! But we have a special kid regardless of his needs. He rocks!

And for the record, last night was pretty typical of how our lives have been at night for about 4 years. I think in all honesty he has only slept through the night maybe a handful of times but I always wake up alarmed around 3 am because he hasn't showed up in our room or hasn't cried all night and I panic. Also he does get sedation meds at night. And they are heavy duty ones and NO they don't work and no we realize that it isn't normal.

Any questions after the long long post!! GOOD.. just kidding. Let me know!

Bad Day- Good Day?

Bad days happen. I am not worried. Sometimes it takes a little bit before some things sink in. I am not worried about the hearing test nor the thought that he "might" having hearing loss. For one thing, if he did he has had it for 3 years. Second, then we can fix it. Third, I really don't feel like he has any loss. I think he has just had so many people poking at that sweet little head he doesn't want them to touch his ears, let alone poke things in them. He does pass the vision/hearing exam.

I think it just feels like the icing on the really yucky cake sometimes. Most of the time the cake is pretty good. In fact most of the time it is fabulous. But every now and again the cake has a bitter nasty place. Take a bite but then stop cause it tastes yucky. Soon it will be back to YUMMY.

Along with bad days come just the crappy stuff that puts you over the edge. You know, the stuff that when you bite the bitter and the icing is there and makes you cry. A lot of that happened today to. The eye specialist we see for Ty is very hard to get into. After his last shunt surgery I called to get in because we have to have baselines after major brain changes. Well they couldn't get us in any sooner than the appointment we have had set up for six month so I waited patiently. No biggie.

I called last week to double check the appointment and they called yesterday to confirm we were coming. Told them yes. Today we get a call letting me know that they needed to have it CANCELED. I was like OK why? Thinking if the doctor was sick no biggie. Well apparently in the 3 calls and six month wait the referral expired YESTERDAY. If I didn't get a referral in to them by the appointment I would not be seen. Um we had a pediatrician appointment on TUESDAY. A little notice that I would need another referral would be fabulous. it wouldn't have been a big deal at all TUESDAY.

An appointment that I have on Tuesday of next week also needs a referral (which isn't a problem since my doc was sending me there) and the specialist that we are seeing needs some of my past medical records. I call to verify that the insurance referral was sent and that everything was done. She calls back (after telling me it was all set) telling me that I need to come in and sign a release for my medical records. I was thinking " If you are referring me and I am walking out of YOUR office don't you think you would have me sign YOUR release form?"

No big deal right. Well I had respite today and she didn't come. Didn't tell me she was not coming so I waited all afternoon to run errands. These errands included buying diapers. Kinda a needed thing in a house of a none potty trained 3 year old. Oh and the laundry soap to stop his rash.. yeah needed that to. Dallas was nice enough to deal with the said amazing 3 year old so I could run over, sign the papers and get the needed items.

So now I sit in a quiet house, editing some pictures and loving how sweet Tyler is and how amazing Dallas is. They are so what I need at the end of the day. I couldn't ask for anything better........

Except...... I entered a contest a few weeks ago during Cerebral Palsy awareness week and won. The goods came in the mail. Took Pictures for you all to see.


AND I totally scored the coolest shoes at Walmart last night. I decided that EVERYONE is getting a pair for their birthday this year.



And how could the day really be THAT bad when you walk in from your errands and see THIS!!!

Questions that have no answers

The last few weeks me and Dallas have really made and effort to work harder with Ty on his speech. Right after Christmas we got a new speech person. It seems none of them have magic wands and it is not what I thought it would be but we moved to have all of his therapies in one location.

He has private therapy for 3.5 hours a week and he gets physical, occupational, Music therapy and speech. Currently we have combined his PT and OT together. It works well for Ty to have them together. They work him very hard and he loves both of them.

Music therapy and speech are both working on getting a response and words from him. This has been a long haul. It is such a bumpy ride. Everything you need in life seems to rely on that one key that is missing.

We need communication.

A while back we tried Signing time and he didn't like it. We bought more Baby Einsteins signs to see if we could get anything. He has picked up and does use a few signs that make the frustrations a little less but full communication isn't there. Even with the small amount of signs we are still limited in understanding Ty.

Since we have him in the Preschool for special needs at the local school district I thought I would start there for some feedback. While I love his program and his IEP I have no loved the lack of feedback from various sources so I figured this was where we should start.

The consensus was yes he is understand and yes he is smart, no we can't get him to talk yet. In fact his speech person asked if he even makes sounds at home. I was a little taken back. Yes he has some sounds but apparently he won't for the speech lady.

I was talking to the speech lady and telling him the words and sounds he makes here at home and she was shocked because he makes NOTHING there. I was a little upset because in 5.5 months he has been there she hasn't CALLED or left a not in his notebook I send EVERYDAY! She hasn't spoken to our new speech people either. Why would you not communicate if that is what we are trying to ask Tyler to do?

I was so upset that all this time they cant' get him to comply with their request and that she didn't even know that he can do some of the things they are "asking". Isn't your thought as a educator or a therapists working in a team to let the parents get involved. I grew up in an education family and I am willing to do whatever I need to do to get him the help he needs to succeed. The only thing I need help with is that you TELL ME!

It seems that sending a note letting them know we need more feedback to help and to provide the best services for Ty is what was needed. They have all got in contact with our other team of therapist and talked to Dallas and I. In turn I sent a whole bunch of items that Tyler seems to respond to ( like his Barney book) and make noises to ( like his puzzle of animals) for them to use in play and speech to get him to make noises for them

I realize there is no magic wand. I know it takes work. Some day I know we will hear him talk. Till then we pray for small miracles to reach Tyler. To help him express himself. To help him less frustrated and even prayers we can understand what he wants so frustration doesn't set in.

He is smart. He just can't let it out. Any ideas out there to help us communicate with Ty?

The Phrase a "new normal"

For all those who read ( or stalk) this blog I am sure they are sick and tired of me telling of our plight with our Little dude. Well, I am going to explain a few things that I have really thought a lot about.

I have never had any other child ( other than Tyler) in my whole life ( duh!!) so there are somethings I never got to experience. Although I have watched from afar and seen and helped in many situation it was never first hand information. When I had Tyler I knew I was "missing" things. I did experience labor. 2 days worth to be exact. I never once pushed to get him out. I did breastfeed but not once did I do it WITH Tyler but always with a pump. I pumped religiously and never got out more than 2 ounces at a time. I was on every milk increasing drug and herbal remedy known to man ( and smelled like syrup for months) but never got to experience "that." I didn't take a baby home with me. I didn't get a fat baby. I didn't get a big belly, I didn't get to complain about being pregnant ( a HUGE pet peeve of mine so don't do it if you don't want to hear a LARGE piece of my mind) The list of didn't get to do's goes on. I know I was jipped. I know I was ripped off if you will.

When we came home I was under the impression we would be Normal. That we would be just fine and he would grow and be a normal kid. BOY was I wrong. We had 3 Doc appointments a week. Then it went to weekly weight checks. We had therapy, specialists and then of course when we were settling into the routine of these appointment to what I Thought was my " new normal" something would happen. We had surgery, then surgery again, then screaming for a month and then surgery again. There was no calls from "friends", sisters or anything to go out and do normal things because we weren't " normal." All I knew was what we were doing.

Fast forward to year number one. After his birthday we sailed pretty uneventful until Feb of this year. Due to RSV season LAST year we were still stuck inside. I was in a basement apartment that had a window, with little light and was small and cramped and yet I was supported by Dallas and no one thought twice about us being stuck there ALL the time. I am sure people thought we were paranoid about germs and what not but it was very lonely. We still has weekly appointments for his weight and I looked forward to talking to his nurse on the phone. So we saw a "new normal."

After his last surgery, I had a major break down in the hospital and had to have someone come and stay with Tyler one night and actually it was more of a morning. I had a migraine, he wasn't sleeping, I was sick to my stomach and I had to get out of that room. Off that floor.. gone.. somewhere else! D's mom came up and took him and then D went up the next day and luckily we were released because I couldn't handle that place for one more day. The new normal there was lonely. VERY lonely. No one called, no one visited, no one stopped by other than Brooke and Steph which was so much more appreciated than life.. but I saw Nicky so I could get food. I never felt very supported through the trials we had.

We moved in February. It was less than one month post op with a total skull reconstruction. Ty had and has nightmares after every hospital stay. He had no house while we were moving. It was hard. Now we have settled into a routine and we have a new normal... but do we.

Our week consists of Foundation for blind children, OT, PT and a eye therapist. So 4 days a week we have some person in our home for Tyler. We will be adding Speech when I find one and possibly getting out of home therapy for a while. So add that to my list!! We see a specialist for his shunt every few months, we have a eye specialist that we see right now every month, a pediatrician and now adding a neurologist and and Orthotic speacilist. I work 34 hours a week and Dallas works. We have no person to pawn our amazing child off to and we support ourselves. We don't have any government support and we haven't been approved for long term care as of yet. So we are left high and dry. We are left with a new normal.

*******disclaimer in here******** I am not complaining that we don't have family around. We chose to move and we have and are having a the time of our life and have made a wonderful life for our self.**********

So.. a new normal.. Yes.. there is something that you get use to. But in order to be realistic about what you face you have to realize that for every new season there is a change. A change that causes a whirlwind of emotions. Ones that are lonely, frustrated, scared and alone. And also ones of renewed enthusiasm about what is to come. Support needs to be there for all of these changes. But realize that what you are experiencing NOW is not always going to be your normal. For each missed milestone or reached milestone is a new normal. It will never be the same again.


I have accepted this as my life. I have accepted that this is how things are for us. I know that I am doing the best I can. It doesn't take away from others not knowing, others who are cruel and others who, if they would only TRY and see it from the other side may feel the love that we do for Tyler.

So ... This is our new normal

*** stay tuned for more on Tyler and his castings at the Ortho today... ****