It will be better when....

When Ty was diagnosed with his bleeds we knew we were in for a long haul. In the back of my head I always thought he would be "fine" and he would be one of the lucky kids who had no effect from the bleeds. His was SEVERE and I really thought he would be "FINE."

The media is full of stories of the babies being born early and being perfectly healthy, nothing wrong and 100 percent perfect. The media seems to forget to report the ones that don't turn out so fabulous. ( Remember the McCaughey sextuplets. Most don't because Jon and Kate took over! Some even speculate that it is because 2 of the babies have Cerebral Palsy.)

Cerebral palsy effects everyone differently. No two kids are exactly alike. What works for one won't work for another. A preemie who is 28 weeks, could be in a wheelchair while Ty who is 25 weeks is not. A 24 weeker who has some delays but no diagnosis for CP and is now older while another 24 week twins with only one surviving and has cerebral palsy but isn't in a wheelchair but is still struggling to walk.

Full term babies can be struck with Cerebral Palsy. Babies have strokes in the womb and are affected by Cerebral palsy. Some can't eat on their own, while others can. Others are fine but can't run and jump.

One phrase heard often is " It will get better when... ( insert whatever you wish would get better)" But what I didn't' understand is that the chances of "Whatever" working just like I thought was seen through my own wishes.

Tyler walks.

When he was learning to walk and going through therapy we had a therapist who said he would never walk independent of a walker. She also said that we should hold him back from walking till his gait was "normal." We soon left that therapist and he soon walked on his own. His gait is not normal but I thought all my problems would be solved when he could walk on his own.

Again, not the case. His stamina is not "normal" and therefore distances are really hard for him. He can't be expected to keep up with a normal 5 year old because ( as much as we try) he just can't go that far for that long.

I thought, if only he could talk then it will be all better. While the talking makes parenting SOOOO much easier, it didn't solve all the problems. It gets easier, better and the works but nothing fixes what we thought was "normal."

What did get better, was my ability to cope. My ability to be handle when it didn't get "better" like I thought. We still rejoice in his abilities, we celebrate the milestones and in the end we remember where we came from.

And ANOTHER word from your Cervix!

Holy Cervix posts! If you are a boy ( or my dad) you don't have to read or if you are my Brother in law I just have to say placenta, placenta, placenta, and I know you will stop reading!

This is actually a pretty cool story. A woman was diagnosed as having something wrong with her cervix that didn't allow her to carry a baby to term. She lost MANY babies early on in pregnancy but she also lost babies at 18,19 and 23 weeks.

After the later term deaths she was given a procedure that is done fairly often in the US where they put a piece of material over the top of the cervix after lifting up the Uterus. This makes it so the baby is held in place by the material even if the cervix starts to open.

The women was able to keep her child in till 37 weeks with this procedure.

Yet another advancement in trying to give babies their 9 months.

Cerebral Palsy 101

My cousin Chelsie did a FAQ/101 blog on her little girls Cancer so after this most recent adventure with Cerebral Palsy I thought I would offer a little 101 on Ty and his Cerebral Palsy.

First and for most, Cerebral Palsy is a non degenerative disease or rather condition. Meaning once the initial " damage" is done it is done. However, it may seem to get worse as they get older because of the changing of their muscles and growing. Also, every child with cerebral palsy is different. A mild diagnosis for one may include a talking but not walking child. Or one walking with assistance. OR it might show little to no impairment to the naked eye, while someone like Ty is visible. ( Ty does have a MILD diagnosis)

When does it occur? Usually Cerebral palsy happens sometime right before birth or shortly after. For some it is a "medical mistake" for others it isn't. I am not sure what you want to classify Tyler's as but his occurred about 24-36 hours after birth when he developed a brain bleed.( His was a grade 3 and 4. Grade 3 touch and damage some brain, grade 4 kills brain tissue) This bleed is when the damaged occurred.

Is it Curable? No it is not. Again the damage is irreversible and therefore there is nothing that can be done to change it. There are things that can be done as management of the effects of it but he will always have it.

When is it diagnosed? That really depends on the child, the doctor and the team of doctors involved in the care. Ty had an aggressive team of therapists to start but was not given a diagnosis for CP till he was 2.5. Some have received a CP diagnosis when leaving the NICU others before they turn one.

What Type of diagnosis does he have? Tyler has spastic diplegia cerebral palsy. Though he doesn't fit in that category completely he does have that diagnosis. For example, his legs are tight and his ankles are tight but his arms are tight as well. BUT they are functional. He can't touch his shoulders or straighten his arms out completely BUT he does have full function of his hands and doesn't keep his hands fisted ( which is common with children with spastic muscles) Therefore putting him in the category of hemiplegia is incorrect.

Spastic means he is TIGHT. Very TIGHT. For example, Tyler cannot sit Indian style because his body doesn't let him bend that way. When you change his diaper and he is upset he is VERY stiff and it is hard to get him to bend. He walks stiffly. So some muscles are working way more than its fair share. This type of muscle tone causes other problems. Hip dislocations and scoliosis are common as is bone deformation. Tyler does have bone deformation in his feet.

Ty will have skeletal issues with his Cerebral Palsy. His feet right now are the most obvious. They are somewhat deformed. His feet are also small. I haven't had to buy new shoes because he has outgrown them in over a year. His legs are smaller and he is overall SMALLER than a typical almost 5 year old.

What treatments will we be doing? Ty has been getting physical therapy once a week for several years. We drive to Salt Lake to get it at Shriner's because a typical insurance plan only covers for 12 visits a year and sometimes they won't cover for rehabilitation. In other words, they know it won't be cured so they don't want to pay for it.

Tyler also gets speech and generally he gets occupational therapy. These basically help him with day to day living. They make him "functional."

More intense treatments include Botox, phenol and possibly a Rhizotomy as he gets older.

With his phenol he gets serial casting. Serial casting is when he gets a really good stretch with casts on that gradually gets better and better with weekly cast changes. Last time it was on for a month. Phenol only lasts six months.

Ty also takes a nightly muscle relaxer called Baclofen.

Ty won't be able to run and play sports like most kids. But he does do really well and finds ways to do what he wants to do. He is very good at adapting so he can do what he wants to do.

Support is HUGE. We need the support and want support. We are often over whelmed and we would love to be able to send him to a sitter or go out but finding a sitter for him is hard. We are thankful for those who do help us.

Please, we would love to answer any questions you have regarding Tyler, his care and how he functions. He is a great kid and we are more than happy to share!

Health Care- The end of the world

I have taken a few days to write my thoughts on health care. ( Though it can be read HERE and HERE!) The reason I wanted to write it was because I feel a little misunderstood.

I am glad that it passed. Do I think it is the VERY BEST we could have? No I do not.

Some of the things that I don't like:

• I don't like that everyone should be required to buy insurance. It should still be a "choice." Some feel that it takes away their right to choose and in turn takes away their freedom.
• I don't like that Student loans were snuck in there in order to get a few "extra" Votes. I think that was sneaky and had no place in medical or health care reform.
• I don't like that taxes will go up though I am NOT sure how much we will really see the increase. ( does anyone know?) ( OK I looked it up.. Major increase for 200k income levels. I don't know anyone that makes that much. And slight increase for 88k and I again don't know THAT many people that make to much over that or even THAT.)
• I find it funny that you get taxed on Tanning and "cosmetic" stuff.
• And I don't' understand the Cadillac plans. So I am not sure if we fall into that but our insurance plan is REALLY a good plan but we pay a lot. But we do fall under the 20k per family I think we are OK.

Some of the things I like:

• FINALLY the pre existing clause and the denying of someone who HAS one of those conditions is gone for Children.
• I do like that it will also add in Adults but not until 2014. Why do I like that? I am fat and I have endometriosis. So therefore, according to the insurance company they won't insure me. ( yep I have that in writing!)
• I like that kids can stay on the insurance of the parents till they are 26.
• They can't cut the CHIP program and must maintain it. So Utah can no longer take money out of the CHIP program. ( which is a KIDS program) ( oh and medicaid program)
• I like the wellness program. That provide Immunizations and other preventative services for infants, kids and teens. It goes into effect in six months. So much can be prevented by these services.

Why this impacts me and my family so much and why I was and am glad that it passed: Ty has a pre existing condition. Ty is considered uninsurable. Without insurance we can not live the American Dream. We would be bankrupt and be the only homeless people who had Cobra. For us the cost of insurance literally makes us have to chose between a home or his care.

I was obviously not impressed with every part of the bill. I do feel that to be "American" I need to look at both sides and chose (hopefully prayerfully) what will be the best way for MY family and MY individual needs and go with what I feel is the correct thing for US.

And Just a few tidbits:

Our care for Tyler is dependant on what our insurance WILL cover, not what is BEST for him. So we don't think that his care will change.

No more people are going to go see a neurosurgeon than already do. So our wait won't change.

In Utah right now a wait on the genetics list is ten months. So again... things are already bad.

THERE is my take on health care!