Orthopedics- CHECK

Ty has this thing where we make a list, we talk about the list and he “checks” it off.  It is kinda funny to hear him say it, and he even does it when he is all by himself.

Example : “ Mom what are we doing today?”
        Me: “ School, doctors and then home.”
        Ty : “ School- Check, doctors- Check and home- check”

The lists and checking could go on for hours. He loves to do it at the end of the day, when we have a HUGE list to check off.

After our trip to Utah and I was horrified as to how loose his legs were and our appointment with the new physiatrist, I got some opinions of other moms of CP kiddos and decided that we really needed to see a orthopedic doc to make sure we weren’t hurting anything in the long run. And that the end result was what we were looking for.

We made an appointment for the new CP clinic that Dr. S is putting on at PCH. But, what we didn’t know, was that you had to be a established patient. So we got put in the day before the clinic. I was a little disappointed but found that this was the FIRST one!

Dr. S was AMAZING! What makes him so much cooler, is that he has 2 kids with CP. They just turned 16. He has sat in our seat before and he was so easy to ask questions too.

He was concerned about our course of action with persistent phenol. He doesn’t love it. We have found that most don’t and we are kind of on our own. We can’t find a doctor down here that does it and so we do have to go to Utah for it. So we are looking at some other options.

He was concerned that we were not seriously looking at any types of surgeries to help loosen his muscles. But the biggest concern is his ankles. His toes will always be the way they are and they will always be a little deformed but overall he really needs stuff done with his ankles to improve the quality of life and walking.

Another big concern is that we have not ever had xrays of his hips. We did ONCE when he was a baby at Shriner’s but no one has ever mentioned it before. This kind of freaked me out. My friends kiddo had surgery and it did not look pleasant so I was not looking forward to the idea that we overlooked something that is kinda big.  The other big concern was that I was not expecting xrays so I didn’t bring another person to hang out with Grayson. Since they wouldn’t let G stay in there I had to leave Ty alone.

We went to the xray room and Ty climbed right up and talked to the lady and was so so so good. I was a little worried about leaving and stood outside the door waiting for a cry or a scream or something and it never happened. When they came out the door, Ty said mom, that was awesome and I can spell xray. He handed over his sticker and we were done.

His hips are OK. Not perfect, but OK. They don’t think that we will be needing surgery on them any time soon and we are OK. So really the only thing they want me to think about is the Heel surgery. We all have such a different idea of what to do. Every single doctor we have seen in the last 2 months has a different opinion.

We left the appointment feeling pretty empowered. We headed towards Tempe where our dad works so that Ty could go to the beach. We used our stinky diaper plastic bags to gather up a rocks and we had our left over lunch to feed to the birds.

We had a great time. Ty and Grayson chased birds for a while. Dallas was happy to see us. I was able to go to a Relief society activity that was very awesome. So it was a good day.




Good information, good day, great kids.


Very Thankful.

Med Management

After our change of Keppra to his new seizure meds we were referred to a Psychiatrist. I wasn’t sure if I liked the idea that we needed to see a Psychiatrist but they mentioned that it would be for med management only and that it might help with the behaviors that we were having so I thought why not try it and see what they have to say.

Our appointment was made at 9:00 in the morning. It just so happened that ( even with leaving on time) it seemed we picked the only day to travel that we actual HAD a snow storm in Utah and the drivers were terrible. I called to let them know we would be late but seriously it was a disaster.

We got to our appointment and got some things situated with his meds. Dr. M and I decided to treat his anxiety now so that as he grows older he doesn’t have other issues and we can teach him the best way to deal with his anxiety. We feel that it will help him be accepted and deal with all the other issues before they become a bigger problem.

Because the meds interact with his sleeping meds, Dr. M will be working with our whole team as much as possible. Our first doc he will be working with is our sleep doc. If all works, we will be able to cut out our sleep doc and just do the med management through Dr. M.

On a soap box: Some day, I want to have a BIG old meeting with EVERY single doctor we have AT THE SAME FREAKING TIME! It is so hard to have everyone on the same page. It would be nice to get the information out instead of repeating it a MILLION times. A girl can hope.

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.

Pity Party

To my Pity Party!

When: When things are NOT going that great.

Lots of Gifts please!!

Chocolate is welcome~

Today has left me super high on emotions and super down. Usually I am OK and usually I can pick up the pieces and figure out what to do. Today is not that day. I wish I could easily find a remedy because I don't have time to get stuck in a funk.

A little over a week ago Dallas and I got to go out on a date. I was so excited. I even dressed up to go. As we were driving to pick up Tyler he got really sick. At first I thought it was just the dinner not sitting well. We got to his parents house and he got SICKER fast. This has happened before and we ended up in the ER. ( 2 times to be exact.. once by ambulance) It was a Friday night so I thought if we JUST got him through the weekend we could get in to our family doctor.

By Sunday he wasn't getting any better so I took him to the Instacare. They ran some blood, said he was dehydrated and basically sent him home and told him to call his family doctor for more options. So we did. D got in on Monday( or Tuesday) and they sent him to get a scan of his tummy.

So he has been sick for almost 2 weeks and they still have no answers. We are getting close and tonight he had a HIDA scan for his gal bladder ( which we are almost certain it is) and he has an appointment to see a surgeon tomorrow. But he is sick. Which means he isn't able to help much. He sleeps a lot and can barely make it through the day. He isn't able to help with Tyler and it makes me super stressed. ( Not his fault)

In the midst of him not feeling well the Air conditioner in the Jeep went out. I HATE the jeep. I want to sale it so badly but being the awesome driver that I am, it has been in a few accidents. The last accident has still not been fixed.( think deductible.. High because of my awesome driving and a bunch of other stuff we would rather spend 500 bucks on.. Like food, place to live) So we are stuck with it until all the odds and ends are fixed. We took it in to get it looked at and get an estimate. $700 bucks. Yeah, we had a small anxiety attack.

Lucky for us my dad works at a place that gave me a amazing deal. We had bought tires and needed to head to my parents anyway but I was not expecting to go alone NOR was I expecting to go when I did.

Last week after a FULL day at Thanksgiving point and visitors and Dallas being sick I left around 8 PM and took the 2 hour drive to my parents with Tyler. He has the hardest time sleeping at home but here we are 2 hours away from home 2 hours past his bedtime. He was WIDE awake. He spent the next 3 days literally crying and whining. I rarely lose my patience with him. But for 3 days I was about ready to lose it. The drive back home was HORRIBLE. He would get so mad over nothing. It was 2 hours of crying. ( No he doesn't really sleep in the car. He was and usually is up the whole way.)

When I got home not only had I left in such a hurry but I left the house in a mess. A really bad mess. I figured that Dallas would probably be feeling somewhat better and he didn't have Tyler to worry about so he might be able to get a little bit done around here. But he was still sick. So I came home to a sick hubby, a gross house and laundry up to my eyeballs. Not to mention 3 days of non stop Crabby pants.

By Friday Dallas was so sick he ended up in the ER. They of course found NOTHING wrong with him. Since he didn't have a high white blood count he was sent home with pain medication and a script for a Hida scan. He was given a shot and sent on his way. Oh I was LIVID. They say that while it MIGHT be his gal bladder ( which I am really thinking it is) it isn't considered and emergency so call your regular doc.

I had already called a general surgeon/gastro/internal whatever you want to call him and made an appointment just in case no one could figure out what was going on with D. Luckily we are able to see him tomorrow. Dallas had the Hida scan tonight and he came home SICK SICK and pretty much in tears.

We have been doing stuff with fertility ( or Infertility) for several YEARS (boo!) and needed to start one of the medications last week. But because walmart didn't have record of a refill I had to call my doctor to get it done. He did, and added 4 more refills but I had to make an appointment. He sent in the refills after 3 times going to walmart. Which means I missed the day I had to start this stuff and therefore get to wait ANOTHER month. I LOVE my doctor but I hate having the reminder once a month that I am HORRIBLY broken. As I sat there today with him going over my charted cycles and fertility clinic info. I felt even more down. Not to mention my almost 5 year old not wanting me talk and getting mad because I couldn't pay attention to JUST him. Then leaving the appointment just as broken as when I came in with no answers.

Tyler. Oh how much we LOVE him and his new found talking. That is the best part of the whole summer. The hardest part is how he spans from a 2 year old to a 5 year old. That leaves me with 3 children in one. While I know we want another one I really don't think people get how difficult it is to have it all wrapped into one kid.

He can't walk far enough when we go to the store to not be carried. He is HEAVY. He is not "disabled" enough for a wheelchair and isn't "disabled" enough to need a walker. He isn't big enough for me not to carry him so I get to carry a 30 pound stiff muscled kid. Oh and then what do you do with a kid that is to big to fit in the cart seats ( and you can't get him OUT of them when you are ready to go cause his legs don't bend that way.) and you can't put him in the bucket of the cart cause you need groceries? Anyone have a solution to that one?

He can't do some things like other 5 year old kids so sending him out to play isn't an option. While I would love for him to go out on his own he can't make friends because he doesn't talk well enough. Plus he doesn't play like a regular 5 year old. So unless your 5 year old can play like a 2 year old then we aren't invited for a play date. And at 5 no one has play dates. They send their kid out by themselves. He does great with the 2 year old but you don't see many two year old out without their moms. I can't send him out to ride his bike because he can't pedal it. So I am having to push him (again.. a 30 pound kid that is pretty much dead weight) around on a trike that doesn't really work for a 5 year old. ( A trike for his "level" is around 700 bucks. As is a stroller. That would be 1400 bucks. Not covered by insurance and not including the 20 percent of EVERYTHING else, plus gas, plus fertility, plus a place to live. blah blah and don't forget food)

He doesn't have the maturity( or is it just imagination...either way he doesn't have it) level of a 3 year old to do imagination play so he doesn't entertain himself. So I am his source of entertainment. 24 hours a day ( or until he goes to bed) all day long. While I get that he is my "job" I am also a mom, wife, housekeeper and chef so add that to a child who can't do anything on his own but watch a movie. ( and even then I have to sit and sing with him or he gets upset) You have the recipe for a very stressed out person.

He is a good kid. I know that things are tough for him. I know he doesn't want them to be that way and neither do I. When you have the other stresses in life the patience wire just seems to be the first to go.

The bonus: at least this month I don't have the extra hormone in my body to make me even more emotional.

The downside: Dallas is still sick, Ty is always going to be this way and I am still infertile.

Um, can I have the wipes.... AGAIN

In the world of smart phones and Ipads and key less cars why is it that Huggies or anyone else for that matter has YET to figure out that they need Yummy smelling wipes to help a mom out?

Picture this: Ty acts off. Really off. Wake up one morning and after a brief time he has a dirty diaper. BLOW OUT! Like infant blow out.. up his back. EVERYWHERE!

Lucky for me my dad left me a carpet machine cause I needed it.

I was also not smart and had decided since we were going through WAY less diapers to buy generic instead of my trusty Huggies and I didn't know that by going by the weight on the Walmart ones that I would be in BIG trouble. You see, in walmart diapers it says Ty is a size 3-4. Yes... my almost 5 year old is LITTLE. In fact we went to the doctor because he was so not feeling well that his Doc. mentioned our little weight problem.

He wasn't allowed to go to school on that Tuesday ( and then the bus thing happened on Wed!) but he went through more than ten diapers in a day. Poor kid. His butt was not a happy camper. I do have to say, my dad's carpet machine saved my life!

Ty had Rotovirus. I was up to me elbows in poop and thank goodness it passed in a few days!

( sorry.. no pictures!)

*side note: This was last week but we like to have a record of what is going on in our world. Again... I had "issues" last week"

A National Tragedy Has Occurred!

Dear Uncle/ Doctor Barrett,

A small... NO LARGE national tragedy has occurred at our house. It is in need of a doctor. My mom isn't very good at fixing stuff like this. We have NO idea what we will do.

My best friend Barney is dying. Like REALLY dying. Soon his head will fall off! he is my best friend. I even eat his hand. I dripped wax on his face and mom put him in the bath and there are a few more places that could use a doctors hand.

His tummy is coming apart, his head is coming off and I am afraid he is going to be come a amputee. If you could give my mom some tips. She doesn't even need to make it look as good as you would do.

Thank you....

Love, Tyler

Can we say APPOINTMENTS!

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.

Quality of life?

Something had been brought up in a preemie group I am that got me thinking. A mom was posed with the question whether or not to continue care of their child after being diagnosed with a brain bleed. The parents were questioning what the "quality of life" would be for this child. They were asking for "stories" of kids with bleeds and what the outcome would be.

This is what got me thinking. What and who determines the "quality of life" for a child?

The medical dictionary defines quality of life as a patent's general well-being, including mental status, stress level, sexual function, and self-perceived health status. When a child is diagnosed with a brain bleed these "qualities" are in question.

The doctors have to give you worst case scenario. They HAVE to. I never would blame a doctor for telling us that. If they didn't and worst case scenario happened and they were not warned the doctor could be held responsible.

As a parent can we for see the future and decide who we would "handle" things? When we were given worst case scenario and the thought and option to stop care were presented ( in one way or another) we discussed wheelchairs and saying it didn't matter. As we have becoming further in the journey a wheelchair is harder for me to swallow. Could I guess that when we were discussing his future? Does that diminish is quality of life?

The answer to me is an easy one. No on can determine quality of life. Tyler has a wonderful quality of life. He is happy, healthy and has the necessities of life. He is fed, bathed ( often I might add) and clothed. He is played with, cared for and taught many things. Does he have limitations? Yes. Will he have struggles? Yes I am sure he will. Do you have limitations? I know I do.

How can you say that a child that is brain damaged doesn't have a good "quality of life" when there are babies that are born to drug addicted mothers or teenage mothers who can't take care of them. What kind of "quality" of life do they have?

I don't have all the answers. What I do know. My quality of life is better because I have Tyler in it. To me that is all that matters.