Ufo's...... Afo's... whatever

A few weeks ago Ty was casted for his next set of braces. We had our new evaluation for PT and had our appointment with the Spastic clinic. The PT thinks braces are a "wonderful" idea while the docs and 4 therapist say they won't work.

The docs and the therapists at PCMC don't think it will work because his ankles are what is tight. They think something helping the falling arch in his feet will work better. They also think that with a baclofen trial and more phenol and casting. The afo's will just hinder what he does have and we need more support to keep his feet from being deformed.

That said we were told that we are welcome to "try" the braces but chances of getting him to fit and to not get sores were pretty much slim to none. We expressed our concern to our braces dude and he agreed that it will probably be a hard fit and we will need a lot of adjustments. As we were fit for them the first part of the appointment we already had one problem. His ankle didn't bend to keep his feet all the way flat in the braces so he decided that we might be in bigger trouble and he would come upstairs to see us in our appointment.

Ty got Spider man braces and he was not thrilled to be put in the braces. He was crying so hard that I had to lie to him and tell him that his spider man shoes were super heroes and his shoes would make him jump higher. I HATE lying to him. ( His shoes will NOT make him jump faster or run faster. Neither will the braces. I feel telling him that will diminish his trust over time. I feel with his medical stuff that being honest if it will hurt, and what the procedure or equipment will do gives us as the parents TRUST for the future procedures.)

I had to give Mickey Mouse new shoes and that seemed to help. But overall I never know who is more traumatized.. me or him!

I knew we would have to wear them for at least 2 hours, which was fine because we went right up to therapy. We were a smidgen early so Ty went and made himself at home and had a small game of basketball. He was still wearing them and didn't complain.

Therapy is HARD with his therapist. Ty generally won't participate and he has an overall distaste it seems. I have a distaste. A big one. I do have to say that Tyler did have a pretty good day and he worked really hard but I always feel like I am always talked down to. ( don't you love his way of "keeping" Tyler safe. Yes .. use his shirt.. instead of proper positioning at the waist... but what do I know. I am JUST the mom)

After our Hour therapy we took off his braces and sure enough, just like I had said, there was a nice round red spot on his ankle bone that didn't go away in enough time to be deemed safe.

His therapist said I needed to get him "use" to them but after sending him to school in them we had many complaints from school and PT's and what not about how he ends up crawling all day and when they take off his braces he has a nice red spot on his ankle bone.

He wore the braces to school a few times. His ankle needed a rest so I am going to have to make a call to the braces guy and get some adjustments made. It is a frustrating start to all the fun stuff.

Bring on the casting, and phenol and if possible the baclofen so we can try and get him going on something new.

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.

National Cerebral Palsy awareness day March 20th

I love someone with Cerebral Palsy. Well, actually I love someone who is amazing, smart, cute, nice, loving, caring, and brave. His name is Tyler. And Tyler HAS cerebral Palsy.

About Cerebral Palsy:

• About 10,000 babies per year in the U.S. will develop cerebral palsy (Center for Disease Control and Prevention
• An estimated 800,000 people have cerebral palsy in US (United Cerebral Palsy)
• About 2-3 children per 1,000 have cerebral palsy (March of Dimes).
• In 2003 dollars, the average lifetime cost of cerebral palsy is an estimated $921,000. This does not include hospital visits, emergency room visits, residential care, and other out of pocket expenses (National Institute of Neurological Disorders and Strokes NINDS).
• In 2006, out-of-home respite care at the Respite House in Oshkosh, WI for children and/or adults with disabilities costs $144 per day, or $52,560 per year.
• Two-thirds of children with cerebral palsy will be mentally impaired (NINDS).

About Tyler:

• Tyler knows the sounds for EVERY alphabet sound.
• He walks and he gets up time and time again, when he falls.
• He is caring. He always always gives me hugs and when he knows I am sad he will try and make me happy.
• He says amazing little prayers at night. And though his words don't all come out he is heard.
• He loves his dad.
• He loves school
• He loves kids
• He loves bubbles, water swimming, jumping and getting wet.

So while there are a million and one reasons that we could be defined by Cerebral Palsy we aren't. We have it. But we are strong. He is strong. He is the best and most amazing little person.

So.... Do you love Tyler, a boy who happens to live with Cerebral Palsy? Cause I do!

Preemie Brain "Washing"

This is NOT about Tyler and a really nice bath, but about a study that has been sitting on my Firefox explorer for several days. I seem to keep coming back to it and reading, and re-reading. I am not sure if that is because I think it is a good idea. Or maybe it is because it is one of the first "new" things that has come up for severe brain bleeds. (There was something about Epsom salt AKA magnesium sulfate. This is the first "treatment" after they have already happened.)

The treatment/study was done in Bristol England. When a premature baby was shown by repeated ultrasound scans to have had a large hemorrhage ( from what I can see in several reports, the bleeds were of grade 3 and 4 and resulted in hydrocephalus or at least swelling and pressure KNOWN as hydrocephalus) and then expanded ventricles, the baby was anaesthetised and two tubes were inserted into the ventricles in the brain. One tube was used to continuously drain out the cola-colored fluid while the other tube was used to let clear fluid flow in. The pressure in the brain was measured continuously and more fluid was drained out than flowed in so the brain slowly decompressed. When the fluid draining out cleared, the two tubes were removed. This took on average three days.

From 2003 to 2006, 77 premature babies with large brain hemorrhages in Bristol, Glasgow, Katowice (Poland) and Bergen (Norway) were recruited. Thirty-nine babies had the ventricles washed out using the Drainage, Irrigation and Fibrinolytic Therapy (DRIFT) and 38 had standard treatment.

When they were two years old, independent assessors examined all the survivors. Of 39 infants assigned to being washed out, 21 (54 per cent) died or were severely disabled versus 27 of 38 (71 per cent) in the standard group. Amongst the survivors, 11 of 35 (31 per cent) in the DRIFT group had severe cognitive disability versus 19 of 32 (59 percent) in the standard group. Median Mental Development Index was 68 (out of 100) in the washout group, and below 50 with standard care. These results are statistically and clinically significant. ( Study Found HERE!)

So these are my thoughts. I hope that they do find something that will help their little brains. They are so fragile. They have so much against them when they are fighting for the right to get big that having brain damage makes things twice as hard to overcome the stuff that comes down the road.

There is no "cure" for brain damage. There is no cure for the seizure that come from their broken wires in their brain. If there was something that they could do to help why not try?

The study didn't show any major downfalls. It didn't seem to be detrimental to them in any way. I would opt to have had it tried on my child. I think clinical trials such as the above could only HELP.

What are you thoughts? Is the study something they should bring the the United States?

Way back When- Wednesdays

Last week on my Way Back Wednesday was my husbands take on our "story." Here is mine: Same outcome... different places.

Four years ago (written for his birthday this last year) 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.

*Picture above is the first time I held him. He was about 3 weeks old. It was before his transfer to PCMC.*

Happy would have should have Birthday Tyler!

Today marks the 4Th Would have birthday for my sweet boy. Today was the day he was suppose to come into our family. For most, a due date can come and go and the relief that they came "early" would be a joy. It marks a time of mixed emotions for me.

I belong to a support group of strictly "micro preemie" moms. It seems that through my journey with prematurity later gestation babies and micro preemies have their own "special" set of issues. One that sometimes makes it hard to be empathetic and even sympathetic to our own kind. These women have taught me that it is ok to still think about this day. To even mourn it in a way. The full term birth of our child is something we missed out on. It is something we missed or were "ripped off." One that we are jealous of other women. For some of us, it even makes it so that our preemie becomes an only child.

Having Tyler come early was such a pivotal point for me. In some ways it has made me bitter. In other ways I have grown and changed.
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The experience was in some ways horrifying and in others beautiful.

There is not a day that goes by that prematurity doesn't impact us. We came out with some pretty mean battle wounds.

He was "broken" because I was not able to carry him to term.

There are still so many guilty thoughts that go through my mind. Thoughts that I did something to cause his early birth or that I could have done something to prevent it.

His prematurity has taught me strength. He has taught me strength, determination and more Christlike love than I could have ever imagined knowing and feeling.

Every day I look into the eyes of a Hero.

Happy "would have" Birthday Hero!

And the Verdict is......

Was it worth it.... Did we make the right choice... what the HECK am/was I doing putting cast on my overly opinionated 4 year old?

OH MY!!! YES we made the best decision ever.

Ty had shots done in his abductors AND in his Gastric muscles. His abductors are basically in his thighs.

Did you know that it is "normal" for your kid to be able to open his legs wide enough to sit comfortably on your hip, or on your back for a piggie back ride. Well his finally do. And the effect was seen within a day. Botox takes WEEKS.

He doesn't complain much about the casts on his feet. When we come inside he lays down and asks for them off cause we take off every one's shoes but otherwise he doesn't really say much about them.

He won't use the walking shoes they give him so he walks without them. He finds that the second he gets to the hard wood he is down. He falls so fast. He is so funny. He will then say oops and crawl the rest of the way.

It hasn't really slowed him down much. He can't go outside which drives him insane. We can't take him to the pool and he can't take a bath so he gets really bored.

It would be really nice if he had a few cousins to play with but alas... nope.

Sponge baths are interesting. He even is OK with them. I can't WAIT to wash his hair though. He washes Dallas face and brushes my teeth because we are doing that to him. He is very cute.

A few more days in casts and then we will see where we are. Any little pals out there that want to come and hang out let me know. I work a lot this week but Dad, and Aunt Sheena are here. But he just needs some kids the same age.

He even went to school on Friday. He loved it and he had a good time and he got around pretty good.

So..... the verdict is YES and in six months if asked again we will probably do it again.

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!

A team of support

There are so many people who are a part of the team. Finding what works for you and your child can be hard. Some won't understand what is going on, others won't want to face the reality of it. But most of all you as a parent need to find a place to go where you can have understanding of your situation and most of all compassion AND someone who gets it.

Since I started on my Preemie journey I have found a few online support groups on yahoo that have been a wonderful resource to me. I have become a national moderator of one of them and have really enjoyed watching all the people who have come in the start of their journey frantic for answers, find what they are looking for and then offer support to others.

Your spouse is a awesome support. One thing we were told was that this would make or break our marriage. We had to work hard at finding the right balance for us. When he is up we find that I am down or vice versa. When I need a sound opinion he is there. He has been amazing.

Another thing that helps with support is finding support in those around you. It may not be the same as the support you find in others going through the same journey but support is what it is.

Good luck in your journey. Keep your chin up.

Only a few more days for prematurity awareness day. Please PLEASE in showing your support for our preemie, please post in honor of him.

Dealing with Spasticity

I always thought that everyone would want to have TIGHT muscles. Tight buns, tight abs, tight legs.. TIGHT TIGHT!! Everyone likes tight. EXCEPT...... YOUR BABY!! Thanks to our brain bleed we have TIGHT TIGHT TIGHT. He has been "different" feeling since he was little. You could always find him standing, jumping and bouncing from the time his little feet would let him.

There were times we would have him lying on the couch between us letting his legs go a mile a minute kicking us to gain strength Little did we know that it would be abnormal strength in one muscles zone and not strong enough in the other.

We really noticed when the sitting milestone didn't really happen. It took a lot of repetitious movements for him to get the "feel" of it. Finally we got him sitting. Crawling came easier and then walking felt like it never came .

Ty walks with a "gimp" and just in the last year is when we really started treating his spastic muscles. We have a team now. Sometimes I don't know who does what in the team but none the less it is a team

We have tried casting, AFO's, SMO, and now botox. The next step is phenol shots. They last longer and are more immediate.

Phenol needs to be put into the nerve where they enter the muscles so they are much more painful. Since it is not just a treatment by itself it is usually combined with other therapy

Watching Tyler and his muscles and his walking makes me sad sometimes. No matter what we do it will never change it to "normal" we can just better our normal.

An update in the midst of Prematurity Awareness

Since Ty is the reason we blog about awareness I think it is about time we had a little update on his upcoming adventures.

We have started Speech Therapy at Shriners hospital. I am so thankful that we were able to get in someplace. He is doing REALLY well. We have also increased the really annoying sounds at home and have gotten him to recognize almost all of his letters. We are getting sound and it is VERY encouraging. The biggest thing that has gotten the MOST smiles is his new word. Dallas sister Sheena is staying with us for a while and Ty and Sheena have this bond. Seriously it is so cute. But we were working on a WORD.. just any word... so we combined a few sounds we all ready have and came up with something that would work for Sheena. So His word for her- SHH A.( the A sound what he says at the end) Super cute. He gets so excited and claps and claps and in the corner Sheena BEAMS. He will say SHHA when she gets home, when he goes to get her for dinner he knocks on the door and says SHHA. Oh and if you every meet him.. ask him about Roary. He says it very cute.

Some things we have noticed with his speech ( though positive that it is improving) He cant' form the sounds and words correctly. They are not sure if it is a muscle issue or a brain issue. We are going to be working with a OT to see if it is a sensory, muscle or what issue. That starts in December. They are also not sure if his brain can't put the words together. They are working around a hole so they don't know what exactly is the full cause. We have had to start over in a lot of things and sounds is one of them. It is encouraging to see him improve though.

At night we also have really stepped up the personal prayers with him. Because we are also doing it not just for the spiritual lessons for him but for hoping to increase his vocabulary ( ok EVERYTHING we do with him is therapy even if for the soul :) ) He is DOING it. He is starting most of the words. It is seriously SO exciting.

The next thing we have really focused on is his next step of dealing with his CP. We were doing botox in Arizona and had a consult in Utah last January. At that point the team felt that Botox was what we should be doing. After moving back here the only place we can really get great CP care is through Shriner's and the rehab docs ( which happen to be the same ones) at PCMC. So we really do feel we are getting some of the best.

The CP team and Dallas and I feel that the next step is to do Phenol injections in his gastric muscles and abductors. Because it is more painful than botox they are going to have to sedate him and put him under for it. So while he is under they are going to do Serial casting for him. So he will have both feet in a casts for as long as we can get him to tolerate it.

We are also seeing a sleep doctor for Ty on Monday. There is so much I hope she can answer for us. We are also seeing the OT for a sensory processing disorder. I don't know enough about it yet to really make a comment.

So that is us right now..

ROP continued

During our course of therapy with Tyler we were given a PIP girl. Her name is Aften. PIP is the parent infant program through the state deaf and blind school. This therapy was not a hard one to get and we had them from the second we left the NICU.

Aften was a LIFE SAVER! She has no idea how much she helped me. Aften and I still keep in contact and she is raising 2 very special girls as well. They both have hearing loss. Ironically she worked with eyes and her hubby works with speech so I think they have their grounds covered.

The pip program was helping us parents LEARN about our child's vision loss and how to maximize what they have to help them better them selves and so the can learn to use their other senses to catch up and be functioning in society.

So many things are dependant on sight and when that is gone or missing in some part or another so many things are messed up.

Aften gave me a book. It is a very small book. I don't even think she remembered she gave it to me. I still have it. this book has some AWESOME suggestions

Some things I learned :

1. Their world is so close to them to start. Even if they can't see well babies in general get everything brought to them. Babies with visual impairment will see it different. Use their hands more or put things in their mouth longer. Its the only way they can "see" it the way they need to.
   
2. A routine is very very important thing for them. Not just routine in what they do but routine in where things are. Ty hasn't needed this till recently but he needs to know where his stuff is. If we can find what he wanted he has a few meltdowns. But overall he knows where his stuff is so he can get around his world
   
3. READ READ READ!!!! Tyler didn't really care much for books till recently. Now he loves them But when he was younger we had touch and feel books. Tactile stimulation is amazing for them. We still do all we can to find books that Ty can see ( big print) and things that he can touch. There are also ways that you can turn your regular books into tactile books.
   
4. Learn what they can see. In Arizona Ty LOVED the light boxes. he loved anything to do with light and light switches. He still does. It worked well for him
   

Now that he is older I have a hard time explaining to those around us what he sees. We are currently trying to explain his sensory issues and because of one of the senses being broken we see more issues in other ways. Having a support system willing to help be flexible is so important.

Sight is such a huge part of sensory. I would love to be able to have a family member who wants to learn more come and see some things we do for sensory and to also have others sit back and try to understand. We know that we can't control everything but we have so many things that will help him be at ease and behave better.

ROP is hard. Its a lonely world for mom and baby! I am thankful for people like Aften coming in to our home, playing with our child and getting him to laugh~

* PS I still remember how hard we got him to laugh at the animal bowling* your rock AFTEN

ROP

Retinopathy of prematurity. It is a dreaded word. It is one of the leading causes of blindness in babies despite more than 60 years of research. Sixty years. It is also a disease that effects every child differently and no one can really predict who will have the worst of the worst. Even a baby born at the exact same gestation can have very different results.

So what is ROP?

It is a disease that affects prematurely born babies. It is NOT found in full term infants. It is thought to be caused by disorganized growth of retinal blood vessels which may result in scarring and retinal detachment. ROP can be mild and may resolve spontaneously, but may lead to blindness in serious cases. The growth of the abnormal vessels causes the retina to contract and the abnormal vessels causes retina detachment which then leads to blindness.

Who is at risk?

• Gestational age and low birth weight : The lower the infants birth weight and gestational age the more likely they are to develop ROP AND have to have it treated.
  
• Supplemental oxygen: Though the NICU has increased in its oxygen treatment the need for supplemental oxygen in the little tiny babies is just a fact of life. The use of new technology and younger gestation babies being born still requires oxygen assistance and therefore still at risk for ROP.
• Vitamin E deficiency: though this is still being looked at in medical trials some infants have been treated with higher levels of vitamin E and the levels of ROP has been lower.
  
• Race: Those darn little white males strike again. They are at higher risk for developing severe ROP that results in retinal detachment than any other race.
  
• Indomethacin: The meds used to help close many pre term infants PDA have also been linked to increasing their chance of SEVERE ROP.
  
• Light levels: In the last few years many NICU's have "turned off the lights" so to speak. Keeping the lights low and sound levels down have seemed to decrease the ROP levels.
  

Other risk factors include: Brain bleeds or IVH's, blood transfusions, mechanical ventilation, and anemia. All factors that Mr. Tyler had. In fact the only major risk factor he did not have was the PDA meds.

So what are the stages of ROP?

stage 1: blood vessels not completely developed

stage 2: enhanced grow of blood vessels (more than normal)

stage 3: scar tissue, blood vessels affecting the vitreous eventually + sign: additional observations (bleeding, well filled blood vessels, rigid pupil...)

stage 4a: partial retinal detachment (vision loss) by traction of scar tissue in the vitreous

stage 4b: partial retinal detachment involving area of best vision (severe vision loss)

stage 5: complete retinal detachment (no vision)

The below pictures shows what zone is effected.

• 

Tyler was diagnosed with zone 1 stage 3 rush disease or plus disease. Meaning they saw the change from a lower stage of ROP within just a few hours. From his first exam to zone one was about 72 hours. We had him in surgery quickly!

ROP has damaged Tyler's vision to the point of him being on the verge of legally blind. He is such a great kid that he compensates for so much of his vision loss. We have been lucky that we have had such awesome therapist for him. Aften and Martha were great with Tyler. His functional vision is still undetermined.

One of the things that his damage caused was nystagmus and we have the "cool" eye of a coloboma ( due to surgery/dr error) but it is his special eye that hold super powers.

More on those 2 conditions later. Tomorrow I have some suggestions from our friends Aften to engage our visually impaired child!

Kangaroo Care

One of the known benefits of prematurity and parenting is Kangaroo care. I am sad to say we didn't do enough of it! In fact, I don't think we did it more than just once and it was when one of the nurses was trying to get me to produce more milk.

Though we did hold him more than the average preemie ( that I have heard anyway) we didn't do much skin to skin. But kanagroo care is a very effective bonding technique AND has awesome medical benefits.

What it is? Kangaroo Care consists of placing a diaper clad premature baby in an upright position on a parent's bare chest - tummy to tummy, in between the breasts. Most studies have proven that Kangaroo Care has a major, positive impact on babies and their parents; some studies have proven there is no change; but no study has proven that Kangaroo Care has hurt either parent or baby.


What it does?

Decreases pain in preterm infants. There is some evidence that skin to skin contact or KMC lessens the pain response in full term and moderately preterm babies, but there are no studies on how very preterm babies may benefit.

Increases Lactation in mothers and helps baby regulate temperature : In 1990, Susan Ludington (Heart and Lung, 19 (5): 445-451) concluded that mothers showed thermal synchrony with their babies. A recent study placed babies in Kangaroo Care position on the mother's chest and temperatures were taken periodically of both the mother's chest and the baby. The study concluded that when the baby got cold, the mother's body temperature would increase to 'warm' the baby up. The reverse was also true. Given a suggestion of "Your baby looks warm to me" by a nurse, the mother's chest temperature would decrease within minutes to compensate. Extra blankets and monitoring of baby's temperature might be needed when Dad or others practice Kangaroo Care, but in 1997, Karl Bauer, et al (Journal of Pediatrics, 130 (2): 240-244) concluded that one hour of skin-to-skin contact (Kangaroo Care) was no cold stress to preterm infants.

In 1998, Papi A Gomez, et al (An Esp Pediatr 1998 Jun;48 (6): 631-633 - Spanish) found infants in Kangaroo Care for > 50 minutes were 8 times more likely to breast feed spontaneously. Kangaroo Care allows for easy access to the breast, and the skin-to-skin contact increases milk let-down. A receiving blanket, strategically placed to catch extra milk is extremely helpful - especially if the baby is unable to breast feed.

• Regulate his heart and breathing rates
• Gain weight
• Spend more time in deep sleep
• Spend more time being quiet and alert and less time crying
• Have a better chance of successful breastfeeding (kangaroo care can improve the mother's breast milk production)

As a mom who LOVED holding her sweet baby but didn't get a chance to do the above make sure you realize that you do what you can and Touch by itself is so good for your baby. They feel loved and know you are there.

Keep up the good work moms. You can do it.

for more Info go here and here

The preemie experience........

For a small glimpse into my feelings and a little glimpse into why I feel the way I do or why I react the way I do. This poem helps me realize that it is OK!

The Preemie Experience
By Sandra D Moore

The preemie experience is the shattering of all your dreams
For a normal, healthy delivery,
Of the ability to carry home a beautiful squirming bundle
After a short stay in the hospital.

It is lying there in your hospital room listening to
The happy sounds of whole families joined
Together by the birth of a grandchild, cousin, niece,
Or nephew, and knowing that your
Child is miles away and may not survive long enough
For you to see or simply touch.

It is that first glimpse of a skinny, scrawny, not much bigger
Than a Barbie doll child
And feeling, fear, awe, and joy for such a fragile soul.

It is sitting by your baby’s “bedside” day after day,
Week after week, month after month,
Alternating between the emotional high of “Look, her eyes are open,” or “She’s crying!”
And the lows of “I’m sorry, Mrs. Moore. Something has
Shown up in Lauren’s ultrasound,”
Or even “There is nothing we can do…”

It is hearing the alarms go off for the twentieth time in less
Than fifteen minutes because your
Child’s heart rate keeps hitting zero.

It is watching children dying around you, wondering if
Your child will be next.It is hearing your child’s cry of distress as the nurses
Insert yet another IV and do another
Round of daily blood tests.It is meeting other parents of children who are doing far better
And wondering, “Why me?”
And meeting parents of children who have just died,
And praising God for His mercy
To your child and feeling guilty because your child is alive
And someone else is grieving for theirs.
It is days of nightmarish testing and coping with less
Than positive results to the tests.
It is days of joy at seeing the first eyelash appear,
The child gain a whole ounce in one day,
And two bright shiny eyes look at you and into your soul,
And knowing that your child now recognizes you as Mama or Dada;
Or perhaps looks at you and does not see you at all…

It is that final hurdle before coming home!
It is the sorrow of waiting for the monitor company
Representative to show you what to do
If the alarm sounds when your child is choking,
Gasping for breath, or simply dying.
It is the joy of just being away from all those nurses
And tubes and wires and beeps, and
Walking into the nursery you hastily prepared because, after all,
The child wasn’t due for another three months!

It is thinking the nightmare is over…only to realize it still
Continues in the form of
Such acronyms as PVL, RSV, BPD, CP and numerous others.

It is the final realization that those developmental delays
Have to be dealt with,
That reflux is a normal and unfortunate occurrence in most preemies,
That the constant fight to gain weight is in direct proportion
To a preemie’s ability to do so.

It is watching a child struggle to pick up his or her head, sit,
Crawl, or walk.
It is witnessing only silence when the child should be babbling,
Because the child cannot hear.

It is the mental images of a child running and playing
And communicating with others in a
Perfectly normal manner that are marred when you face years of therapy
In order to simply get the child to eat by himself or herself,
To talk or walk and then run.

The preemie experience is a journey…
A journey through your soul in order to find the faith and strength to cope,
A journey of the mind when you face the emotional weariness,
A journey of the heart…to accept that, no matter what,

This child is yours,

And you will love this child no matter what.

November is Prematurity Awareness Month

~ Preemie FACT: 1 in 8 babies are born premature in the United States. Many will be to small or sick to even make it home. ~

November is Prematurity Awareness Month. In September of 2005 I started blogging so that friends and family could keep track of the roller coaster ride of prematurity we were on. I vowed from that day on that I would do my best to be an advocate AND a voice for those too tiny to do it on their own.

I will be posting our birth story a little later in the Month and most have already heard or read it. I feel it is important to share it and our story. Some times it is a negative time and most of the time it is positive. There have been so many who have run across our blog and have been filled with hope and information. I, in turn, have found so many people who are on the same journey that have filled us with hope and information.

With blogging for prematurity we hope to spread the word and provide information regarding premature infants and the struggles they face. Provide ways to keep kids healthy and to give you a glimpse into the life we live.

Challenge for the MONTH and especially for November 17th: Friends and family ( and especially family) If you have been touched by Prematurity in one way or another, please post during the month of November in honor of that preemie. Show your love and support. The more information out there the more those on the journey can feel they have some where to turn.

*If you are posting a post in Honor of a preemie, leave me a comment so we can link your blog and get the word out!*

Communication AGAIN!

Communication is such a HUGE huge part of life. Sometimes it is UP and sometimes we are really really low. I think it depends on how much improvement we feel or see AND if I feel, as a mom, that I am working with him enough or not enough. One thing I have to remind myself a lot is that I can't change where the damage is in his brain. I can't control what the damage did. Though there is a lot of mommy guilt over it I often still wonder if I did everything I could.

We have had Ty in speech for what feels like forever. We rarely see improvement. In fact so rare that discouragement, defensiveness and anger, mixed with guilt is often found. Why would I be defensive? Because of the above mentioned mommy guilt. Little comments made makes me feel bad or that I am being judged. Anger because I am trying and we DO want him to do these things. And then of course the mommy guilt kicks in again.

Having his IEP the last week and gearing up for the CP clinic at Shriner's my mommy guilt was rising. Its hard to hear that your child is only participating at a specific level because of his disabilities. Its hard to know that they aren't sure if he can do certain things because he doesn't talk. Or sometimes they don't think he can do things because he is so stinking stubborn he won't participate.

While I went to my parents I used the die cutters and got us some Numbers and letters. All different colors and laminated them. Cut them out and we have PLAYED non stop with letters and numbers.

At first I thought it was just gonna be something he would take and throw ( which he does) but he gets what it is. We went through and went through sounds and he can say more than a dozen sounds. Putting them together with something else is still a huge struggle but we are getting sounds out.

Everything we do every single day is trying to get a new sound out for Tyler. Everything we pick up we sound it out. Every circle, shape, etc we ask him what it is and ask him to draw it for us. We encourage him to "pretend" play with whatever he is watching.

In the last 4 weeks he has started doing all those things that we have worked so hard. It is a SLOW process and we are frustrated some days. I honestly feel that communication with him right now is MUCH MUCH easier.

The best thing for me is if I ask him a yes and no question I get a real answer. Not a sound for yes. But a YEAH. A real no and he has an opinion about those yes and No's.

Today we also quizzed him in what letter was what and hew as able to go through and pick correctly. I now get to try again to see if it was a fluke or if he really does know his letters. He knows his numbers and shapes. What more does a 4 year old need right ?

A 4 year old needs a voice. We are finding that voice.

A well CHILD?

Our first appointment after coming back to Utah was today. We had a well "child" check. I guess after 2 they are not considered a baby! I don't think I have had any "stats" for years on him. Probably since we left our pediatrician and moved!

So, for all the people sitting on the edge of their seats... here is the stats for our Child!

Ty is 36 inches ( give or take.) He won't stand up straight because he is afraid of the thing that comes on his head. So they are taking the 36. For all of those who made the comment that he looks tall- well he isn't! He is only in the 2 percentile. He is much shorter than his cousin the same age but much taller than my sisters son Koy. So he is in between a 4 and 3 year old.

His weight is 31 pounds... BARELY! Makes him ON the chart for the second time in his life! The 15th percentile! That is ON THE CHART!

Exciting news huh!

* I do have to say Dr. M was pretty surprised by my lack of running to the docs when he got sick. I guess I have grown up as a mom to. I knew it was a cold and I knew it hadn't spread any worse. Next up H1n1 flu shots! BOO!*

Controversial topics: Health care and preemies

Recently with the health care debate comes some pretty hot topics about how other countries run health care. How other countries aren't doing such a hot job, or how other countries are just letting babies die.

Along with this debate an article was run recently on a UK site ( I do not know if it is just a blog or a newspaper) regarding the care of a premature infant and the government allowing it to "die" by refusing to treat the infant. Most of the comments are by people in the United States OUTRAGED by this type of "medical care." Most of them claiming it is barbaric and inhuman. But it seems ( in my opinion) some of the things that were overlooked were also very KEY points to WHY they did what they did.

* First though, I do sincerely give my condolences to the mother. It is a sad sad thing either way you look at it.*

Fact number one: The baby was born at 21 weeks and 5 days into her pregnancy. Meaning this child was WELL below the "average" of Age of viability. Many different places state that age of viability is 23-24 range, giving the statistic to be around 50 percent survival. The facts given of survival around 22 weeks of age is nearly extinct because there are not many cases involving fetuses born before 23 weeks and 1 day.

Fact #2: Medics allegedly told her that they would have tried to save the baby if he had been born two days later, at 22 weeks.

The difference in ONE DAY in the womb at babies this early is HUGE. It truly is the difference between night and day. And sometimes it is the difference between life and death, disability and long term issues. So much happens in that time frame that make a child more able to be born and given a fighting chance.

Fact #3; They were following their national guidelines set forth by the government.
This is where people seem to think that it is just with nationalized health care. (NHS) when in fact it is not. 4 years ago when we were in labor with our extremely premature infant we were in a hospital that did not have a sick baby nursery let alone a level 3 NICU. We were told that they would call maternal and fetal life flight but if the baby was born 500 grams or less they would not be able to do anything. That was in the UNITED STATES. Not a nationalized health care system. We were lucky that Ty was born at 580 grams. But I know many people who did not make it to that lucky 24 weeks.

After looking at many of the links from the article given above I found MANY different things on the guidelines set forth. I don't know where to find the guidelines for the United states but I am still looking.

Some things I found interesting:

First Article:

"The guidelines were clear: no baby below 22 weeks gestation should be resuscitated.

If a child was born between 22 and 23 weeks into pregnancy it should not be standard practice to offer medical intervention, which should only be given if parents requested it, and following a through discussion about the likely outcomes, the document said."

"The latest major study on survival of premature babies shows that at 23 weeks, just 16 per cent will survive - a statistic which has barely changed in a decade.

Given such poor odds, the use of procedures like ventilation on babies of even lower gestation, who have poorly developed lungs and weak major organs, can amount to cruel "experimentation" pediatricians and ethicist say.

They also point out that of all babies born before 26 weeks, 40 per cent will have significant disabilities, such as cerebral palsy - a percentage which increases with prematurity."

Sometimes even at a later gestation I wondered what was experimentation and how well did they know the long term effects of what they were doing. Yes, I am glad they were able to save my child. The implications of long term effects were there and we knew what we could be facing. But the day to day stresses of living with and providing the best care for Tyler is VERY hard on a person ( including Tyler.)


The second article had MANY good points as well. But they were very similar to the first one. While I can't imagine the pain of losing a child I can't imagine 21 weeks and trying to save my child. I cant' imagine telling someone to NOT save my child. Knowing how hard it was to see my child at 25 weeks BARELY formed what would it be for those babies who are no where near developmentally ready to be out of the womb.

I do not think that the united states guidelines are much different from the UK. They have a higher ranking according to WHO in the health care rankings. Their care is not that far from our own. How can we realistically think that they wouldn't be providing better or similar care?

Summing it all up, I am not sure what is best. I am not really sure what I would do? I think the propaganda against others health system to make the US look in superior is NOT the best representation either.

More weekend.

Friday night we had a lazy night at home. Saturday dad had a hard time sleeping the night before and had a late night. We let him sleep as much as possible. We ran errands together as a family. We haven't been able to do that in a LONG time. We loved it. We mailed off Max's present ( Chantel.. I will email you with the tracking number. It should be there before Friday.. so so sorry we are late)We had to buy a new toilet seat ( a nancyism to come) and took back a few presents. ( I didn't do so hot giving to Dallas) We then used a Christmas present and ate at Red Lobster. Ty was on his not eating streak. But we had a good time anyway.

Sunday was Ty's first day in Sunbeams. He did really well and didn't even cry. He looks so cute and so grown up. He did take his Barney book to class. He was one of the most behaved kids there. As we were sitting in church I could hear coughing all around me. The preemie mom in me cringed. I could feel the germs.. eck!!

Sunday was a great day and Ty went to bed quickly. He slept till 7 am this morning and is now throwing fit after fit. Guess he is more tired than we thought.


Told you he had the Ears. You can also see his gorgeous dental work we had done right before Christmas. Still cute even if a tooth is gone.
Figuring out how to pour when you arms don't work that way was a big task for him but he LOVES it. He loves having water poured on him AND he loves jumping in the water..
Ty laying down after church. Isn't he cute. He did so good at sunbeams. I was so proud of him.
My favorite! Isn't he cute! That face gets me every time.