Liebster Award- Special Needs Edition

This Journey in our life nominated our blog for a Liebster Award. As I was browsing through her blog I realized just how valuable her blog will be to us! Her daughter is visually impaired from none other than the dreaded ROP!

In participation with the official Liebster Award rules, I will get to share 11 random facts about Tyler, and then sharing the answers to Rachel’s questions. I hope you guys enjoy the read, learn something new about Tyler and get to know more Special needs parents!

11 Random Tyler Facts 

1. If you read him a book and he likes it, he will have it memorized. Annoying, but it tricks people into thinking he can read. Sneaky toot! ( But he can read, just not all some thinks he can!)
2. Holidays are HUGE for him. He loves to have parties. So much so, that dinner every night is a special tea party in which we all get to take “Nibbles.” He also knows when all the major holidays are and asks frequently what we are doing for them. 
3. Tyler doesn’t drink anything but Dr. Pepper or Coke. Basically anything without fizz makes him gag due to sensory issues. We try, but after getting caffeine every day of your life for a year, it doesn’t phase him. 
4. Tyler LOVES jokes. He makes them up daily and about everything and laughs so hard and so long. He loves making people laugh. 
5. He loves movies. He goes back and forth between Disney Junior everything, to Sesame Street to the dreaded Barney. I am fine with all but Barney.
6. He has weird names for everything. He calls his school the flying fairy school. My mom is Grandma the Old Lady. I am Mommy the Kelly the girl. He was Tyler the professor for well over a year. He is now Tyler The Brown. And we don’t get to deviate from that name without him correcting us. 
7. Ty loves Goofy and Mickey Mouse. 
8. Ty thinks he is a pirate. He thinks he is Jake the Pirate and that his Vision teacher, Jenny, is also a pirate. He talks like a pirate when he talks about Jenny.
9. He loves school and loves to learn but really struggles and gets angry and says he cannot do it any more when he has to work really hard. 
10. He is a great bowler
11. He LOVES to ride bikes and loves to have friends and loves to be where people are. 

The questions that Rachel at This journey Our life asked are below: 

Questions for nominees to answer:
1.  When did you embark on your special-needs parenting journey? (share your child’s diagnosis story)

         This will be the quick version because we have it written out ( twice) by both of our perspectives soon after it happened. But around May of 2005 we found out we were pregnant. I have endometriosis and was told I would probably not have any kids or would have trouble conceiving but he was a welcomed surprise. After the shock wore off, we realized we would be getting a Christmas baby and jammed a semester of school in while I was pregnant. I had complications from the start and the pregnancy was VERY hard. We found out the first of September that we were having a boy and less than 21 days later he was born. He was 25 weeks and 3 days.  He suffered a IVH grade 3 and 4, hydrocephalus, ROP and a spent 93 days in the NICU. Since, he has been diagnosed with Cerebral Palsy, hydrocephalus, is legally blind and has some sensory issues, developmentally delayed and has speech issues.  He is now almost 8 and in the first grade. 

2.  How do you balance spending time with your other (non-special needs) children? (if applicable)

      We do have another baby. Lucky for us, when we decided to have another baby we had massive secondary infertility issues. At the time, I didn’t think it was “lucky” but it has allowed me to be Grayson’s mom because Ty is in school a full day. We take Grayson with us to all of Tyler’s appointments and he loves being with Ty. He tries to keep up with him and wants to do everything. I often feel a little guilty that I don’t get as many activities to do with Grayson because with Tyler we had therapy 3 times a week. We had people in the home for therapy and fun music classes and we don’t have those with Grayson. Grayson is also a very hard baby. He tends to be a little more needy so I do feel a little frustrated when I don’t manage everything just right. But we are happy he is here. And as far as adding more to make me have to manage better, that won’t be happening. I had a hysterectomy in December, so I get to just relish the last of my babyhood with Grayson and enjoy the journey. 

3. Share an act of kindness someone has done for you or your child.

    The biggest one for us was being nominated for a Make a Wish trip last summer. Tyler wished for a trip with Mickey Mouse on a pirate boat. Because of his visual impairment the trip was just what we needed.

 But, on a even smaller but more significant act of kindness was when Tyler was invited to a birthday party. The little boy, Jake, was in our ward ( our church boundaries) and he brought an invitation over to our house and Ty was able to stay there all by himself. He was welcomed in by his mom, Christi, and he had such a good time. He has never been invited to another party and it really made my heart happy. 

4.  What is one thing you want people to realize about your life as a special needs parent?

     We have a few people in our lives that have Chronically ill kids. And while we see the struggles they live with they are not totally disabling conditions. There is no damage done to their brains or their eyes. They can, and most likely will, go on to life a fairly normal life. With being 7 and still not able to use the bathroom, we don’t have any idea how he can live on his own. He can’t make his own cereal, he can’t take care of himself while we run to the store. He can’t change the station on the TV to something. I am doing all of it for him. I dress him, change him and entertain him. Even while riding a bike, with his visual impairment I can’t just let him go. Someone has to be there to watch for cars. The “normal” things are just not possible for us.  While most things are just normal parts of life, most anything outside our daily lives have to adapted. People don’t always want to make the changes with us and we are left out. A LOT! Raising a child with extra needs is lonely and there isn’t much support by means of others not playing the “my kid is sicker than your kid” card. There are very few that get it. And don’t judge what you don’t know. There is a lot of judging when it comes to our choices at parenting . 

5.  In what ways has  raising a child with special needs affected your relationships/friendships? 

You tend to lose your “normal” kids friends. But you gain, and tend to gravitate to a few really great friends who are walking in the world you do. My best friend, Stephanie, lost her child but still seems to understand what I am feeling and why I am feeling those things. She is always there for me. And my besties Amy, oh what a life saver she is. Her husband and my husband were best friends. They have a child with Autism and I NEVER feel like I am alone when I know she is a call or a message or a Facebook chat away. 

As far as my relationship with my Husband we have really had to work at making it work. We were told the night after I saw my baby for the first time, that this would either make or break our marriage. We have had years where everything is awesome. There are times we really struggle. But we have found we HAVE to date. We need to date more than anything. The need to have time together, talk and make the right choices for our whole lives has to happen but the only way it does is by dating. If not, that is when it is REALLY hard.

6. What brings your child the most joy?

EVERYTHING. Ty gets so excited about the smallest things. He loves movies and buying a new movie would make you think he just won the lottery. Bringing him home a soda from the gas station is like Christmas. He is seriously such a awesome kid!

7. If you could describe your child in three words what would they be?

Loving, Smart and Stubborn

8. What aspect of your child’s special needs has been the hardest to accept?

His vision is really having a bigger toll on us. Realizing that he can’t see what we thought he could and that more things needs to be adapted than we thought has been really hard. Some of the things said in his CLVE were so hard to hear. The other part is accepting that we JUST might not be able to have him life on his own and be married with kids. But that is far in the future. For now and for the current time, his vision is the hardest. 

9. If you and your child could take a dream vacation where would you go?

We DID take a dream vacation, but knowing how much we loved it we would love to go back on a Disney Cruise. There are many things that we know now that we can make his experience even BETTER by doing it again! 

10. What’s the most important lesson your child has taught you?

The biggest lesson is love. He knows no hate at all. Nothing. He understands being left out and being sad, but he doesn’t understand when people are being mean or saying mean things. He doesn’t care. He just loves. Innocently loves. It also turns into innocent faith. 

11. What advice would you share with a parent just beginning their journey of parenting a child with special needs?

I would tell them that no one knows that your child will do. No one knows what things will happen. No textbook will tell you anything. Ask a lot of questions. Read and read and read. Cry when you need to. Take a break when you need to. Take a break from therapy if you need to and most of all, you are doing the best you can. If other’s want to judge you, let them. Your shoes are full. They are uncomfortable to wear and they aren’t always cute. No one wants to wear them. So do the best you can. Oh, and it’s OK to have a bad day. It’s OK to feel negative and it is OK to be a little angry and hateful and bitter for a while. It gets different and easier to deal with. 

September is almost over and I have pretty much not done anything to promote or inform anyone about hydrocephalus other than the first post. I have a million blogs floating around in my head AND have started 9. I have finished none.

So the reality is, I am tired. I am tired of a lot of things. Some stuff have happened in my “private” life that has made it so that I am tired of people peeping into things and then saying stuff to others regarding a life they choose not to be a part of. So I focused on my little family and my ability to be their mom.

We have been establishing a routine here with Ty at school. We have been dealing with Tyler stuff. Stuff that people may think is not something to worry about, but the reality is, it is HARD. We are coming into a time where in our Faith, we are having to figure out if Tyler is accountable or not. Meaning, does he know the difference between right and wrong AND to understand the consequences and the ability to take on covenants. Or is he one of those small percents that is not in the category to be baptized. Because it was coming up on a VERY emotional time, I just kinda checked myself out of being judged.

An example of a Tyler-ism and does he get it. After a VERY long morning with everyone, the parents were upstairs in the house with Grayson. I was drying my hair. D came inside and asked if I had been downstairs. I said yes, earlier to check on Ty and his breakfast. Turns out, in the time I left and D came back in, Tyler had gone over to the water cooler and DRAINED IT on the floor. He hasn’t touched it in over a year. But that day he drained it. As I wiped up the floor we had him help, sat him in Time out and when we talked to him about what was the problem he couldn’t tell us why we were upset or mad or what he had done wrong.  To top it off... we are STILL not potty trained and it seems like a HUGE chunk of sadness realizing that I JUST might be doing this for a lot longer than I had thought. Like MY whole life.

Another Tyler-ism. Tonight while we were cleaning up after Dinner Ty was riding his scooter in the house. ( Mind you, my kitchen is HUGE and fits and entire sitting room in it. ) It is also all tile so it is the perfect mini race track for him. Grayson LOVES to play with him. He was being “chased” by Tyler and when Grayson decided to be done he left the game. Ty decided it was a GOOD IDEA to run him over. So, there goes Grays head first onto the tile. They are both super tired, we start baths. Tyler gets mad at Grayson in the tub and pushes him and holds him under the water while I am doing meds. Yep, the sweet Ty tried to drown my child. I was FURIOUS. You can’t just be ok with that. But what do you do. There is nothing that I can do to MAKE him understand why it is wrong.

To top it off, I am sick. We had hoped that I would make it 2 years before experiencing the symptoms of endometriosis. Well, gee. What a crock. I am so sick that I can’t feel my leg. It is so bad. When I went in to beg for a hysterectomy, I got told I wasn’t old enough. How can I not be old enough. 15 year old children ( and younger) can have children. I can’t get pregnant without massive loads of drugs, shots and the works.I can’t stay pregnant without all the help in the modern medicine world and I can’t decide if I want to feel my leg or not. So I get to do a month of waiting, crying and hoping my leg doesn’t fall off.

On top of the above, infertility raised it’s ugly head along with some emotions I forget where there. So while I am so happy for some, I am so sad for myself. Add that to the emotions of life, Cerebral Palsy, (judge mental people who I KNOW read this thing... HI to you stalkers out there) school, baclofen, hydrocephalus, anxiety, depression and people who can’t take their own responsibility, I am SOOOO tired.

Coming up. Ty’s birthday. Tomorrow we are going to the Phoenix children’s museum and in October we are going to Utah. Weather is cooler here and we are getting into our routine.


 We can do hard things.

What is Endometriosis?

Endometriosis is a disease. A very painful disease. The tissue that are found in the cells that line the uterus called endometrium, form in other places OUTSIDE where they belong. Some places that these cells are typically found are on your bladder, bowel and around other surgical scars. ( It can be around other organs as well.) It can be found on other sexual organs and inside your fallopian tubes.

The thing about these particular cells is they have a "memory," so when your monthly cycle is not hindered by hormones ( like birth control) they act like they should if they were found in your Uterus. The problem is, they aren't IN your uterus. In turn you get internal bleeding, scar tissue build up an no way for those cells to leave your body like they are suppose to. I leaves you with bowel issues, incredibly painful cramps and infertility or problems getting pregnant.

Symptoms of endometriosis are VERY painful periods. Sometimes those cramps are so bad that they make you sick to your stomach. For me, my legs go numb. We know I have endometriosis on my bladder and my bowels and on my tailbone. We know that I have some on my sciatic nerve. So when certain times of my cycle come I can't feel my legs and my lower back is so tender you can't touch it.

Other symptoms include 3 weeks of cramps and pain like you were having a period. Bowel issues including chronic constipation, diarrhea and an upset stomach off an on throughout your cycle. ( When mine is bad and I know I should be getting treatment of some sort for it I have all of the above but have morning sickness like stomach ache.)

It causes painful sex, painful bowel movements during your period and frequent yeast infections. ( TMI on which of the above I get so, well, pick one (or three) and you are probably right)

The amount of pain that I have varies throughout my cycle and really depends on what types of hormones are currently in my body. For now, about 3 days before we think I ovulate I am SICK SICK, and I am fine for a few days after ovulation and then the full 2 weeks before my period I have cramps, a back ache and my bowels are not friends with anyone but a throne.

No one knows what causes endometriosis. There are several things that they "think" are possible causes but basically they just don't know.

To be diagnosed with endometriosis you have to undergo a laproscopy. Though it can be assumed by symptoms it can't be confirmed until you have surgery. My first surgery was when I was 20. It was confirmed then. Since then we have had treatment with drugs, depo lupron and more surgery.

The treatment options for endometriosis are slim. There is pain management. High doses of naproxen are given for every day pain. Sometimes narcotics are issued depending on the severity of the endometriosis and the duration that you have gone without large and better treatment options. Hormone replacements, such as birth control, shots of depo lupron and to have a baby. The only "cure" is a hysterectomy. ( which once we have another child we are doing)

When you are pregnant your endometrium don't grow any more. With nothing feeding them they tend to go away. The down side. It is hard to GET pregnant. Most want children and Most doctors won't do a hysterectomy until someone is 30.

The most common medicine given for Endometriosis is Depo Lupron. Which turns you into a crazy crazy person. Trust me. 4 rounds later and at different times in my life, it makes you a VERY different person.

How this effects our fertility?

In order to go through infertility both D and I had to be tested for every test under the sun to determine where the infertility was coming from. In easy terms Dallas is super man. The problem lies with the endometriosis ( aka me!) We started trying and of course can't use birth control in order for that to happen. When things got bad we started a round of Depo lupron. So I guess you could say it was put on hold. Since then the pain has gone from only hurting a week before my expected period to 3 weeks before my expected period. With the 1st week, the week of ovulation, so bad I can't feel my legs. Though we fight through the pain and issues, we are still not pregnant. This is even with ( TMI mom... don't read) well timed intercourse.

When the only solution is to get pregnant or have a hysterectomy we are running out of options fast. Endometriosis is real. It is not a made up condition. It hurts millions of women each year. I just happen to be one of those.

Please feel free to ask any questions you feel you need to in order to understand the condition.

Confessions of a Mother

I learned at the CBC that all my readers ( my mom!) want us to be totally honest and up front and divulge our "secrets" and share what makes us who we are and not be fake. Be Real! That the truth will set you free and others will find you who are in the same situation. It is all about support. Right?

So that is what I am going to do. I am following in the footsteps of my new friend Monica who talked at the CBC conference and taught a panel on Special needs and living in a Atypical world. She felt that Honesty was in the best policy for her so she even gave her own "out" about depression. She had NEVER blogged about her secret life with her xanax and depression. She must not have realized the rest of us have it too!

Well my confession isn't quite what hers was and mine isn't all a secret. But not everyone knows.

So here it goes.

For over a year an a half ( almost 2 now) we have struggled with infertility. We have seen every kind of doctor that we can to make sure that our pregnancy goes healthy and smooth (perinatologist, OB, urologist) and we have been waiting and waiting (and praying) for that little embryo to come on in.

We had to do medication in January to help stop the growth of my endometriosis and in turn had to wait 3 more months to officially "try" again. ( What's a few more months right?)

We got our plan of action from my trusty OB and we went home. Lots of new medication on hand. So with a lot of prayer and talking we decided it would be in our best interest to go ahead and get into a fertility endocrinologist ( aka a fertility doc.)

There were a few indicators that maybe we needed to get checked out. Being unsure of where the problem was, we sat down. Ready to hear all that they had to say. ( Or Not) No matter how much I knew there was stuff "wrong" with me it isn't the best feeling in the world to be told that there is a problem and then given a plan of action VERY quickly.

In our consult we went through family history, concerns and personal history. We had a few concerns and then our Doctor said " I am concerned about getting you pregnant and soon." So our plan was put into action.

We got all of our information. It was a lot to take in. There were A LOT of questions. One big one was cost. Our insurance that we pay a few grand a month for will cover IUI at 50 percent but not IVF. They don't cover a DIME of infertility medication. So of course cost is a HUGE concern for me. Dallas was quick to put me at ease. But cost is still a HUGE concern for me.

Our first cycle seemed to fly by. We started with an ultrasound, ordered medications and did blood work. A HSG was scheduled and done. This is where we hit our first snag.

The HSG is not suppose to be painful. Unless of course you have a tipped uterus or something blocking your tubes. Though my tubes came up fine ( you find out after if it is ok and mine were clear) my uterus was tipped. Badly. Out came these MASSIVE tweezers looking things. Needless to say I did not fair well. I went home and totally crashed in my trusty sweat pants. I thought things were going good till a few days later. I woke up sick. VERY sick.

Turns out there is a SLIM chance of infection when you have an HSG done. Well, we had a slight infection. I was sick for about 2 days and just laid in bed. Got some antibiotics and felt better in a few days.

Next we went in for our ultrasound to see if my body has some eggs. Low and behold NOPE. Not ONE. It was really hard. REALLY hard.

Our clinic decided it would be in our best interest to do some estrogen pills to see if my body responded. It was really hard to take the estrogen knowing that it was "waking up" my ovaries which in turn my endometriosis grow. But Tuesday we had our ultrasound and things worked.

For our next cycle we have a new protocol. We went from a Clomid cycle to a FSH cycle. This is a daily injection ( MUCH more costly than the CHEAP clomid) and a much more painful cycle in hopes that we get at least one egg.

New medications were started and the cycle is almost ready to begin.

That my friends is our big confession. A deep dark one!

You can find the daily writing of it over at Fertility fight

We struggle with infertility. We REALLY want a baby. We don't want to adopt and I have not gotten to the point where we are OK with just being done.

UBP 2010~

Welcome to our blog! We love new people! We LOVE comments too!

So here is our story ( the short version because you can read the FULL story here and here!)

I am Nancy ( YES! CLICK!! I LOVE to take pictures!) and I am the mom to a former 25 week M preemie ( YES he was 15 weeks early!) and the miracle that we blog about. His whole life has been filled with HUNDREDS of medical procedures and 9 brain surgeries ( and we are NOT done yet). Shortly after he was born he had heart surgery to correct his a small heart defect known as a PDA. He suffered from brain bleeds that left him with brain damage and resulting hydrocephalus. He was diagnosed at age 3 with Cerebral Palsy. He has had brain surgery to correct Sagittal Craniosynostosis that was a result from his prematurity, several shunt malfunctions and ROP surgery. His ROP surgery has left him legally blind.

He is amazing! ( and funny!!) Though we still deal and will deal for the rest of our lives we are so proud of him. He does walk. ( And currently walks UNASSISTED!!) He doesn't talk. But he does have some communication that seems to be improving EVERY SINGLE DAY!

While I mostly blog about Tyler we do have other things going on. I am a stay at home mom that uses my blog as an outlet when I am still riding the roller coaster here in "Holland." The Dad is a independent computer program developer and he writes Apps for the app store for Iphone and also for Mac computers like THIS ONE! And THIS ONE! ( which we will be giving away!)

We also have endometriosis which has been causing some infertility issues in our world. We have been trying to add one more to our family for a while. So sometimes the emotions are RAW and not nice!

Please take a look around!

Some of my favorite posts are

• The man at the grocery store
• A birth story ( from his dad)
• Quality of life?
• Left without a voice
• The Eve of my Motherhood

During the week we will be giving away Bows from The Darling Daughter, 2 $15.00 gift certificates from Thoughts on the wall and a copy of Newsprint and some SCENTSY! There might be more so come back OFTEN!!

* For the contests, Please wait for the posts that will be coming up in the next few days!*

* First contest is up!! SIGN UP!!*

I feel like I have bloggers block

Have you ever been in that kind of a funk where you are so overwhelmed that you want to write a million things but can't get them all out and even if you did SOOOO many people would think you are not a nice person ( which I generally think I am?)

Oh... you don't feel that way... OPPS.. I am crazy!

Well then, I guess you will all have to wait for all the blogs I wrote while angry, upset and frustrated to be published!

Till then....

A few fun things in the Brown household:

The list of lupron side effects gets longer every day. I am not sure how much longer I can handle them without throwing in the towel and asking that I be all done. Last night while chit chatting with Dallas I was a little "emotional" and the tears were flowing. I noticed that the tears were either flowing MUCH more than I realized or I had the worst runny nose imaginable.

I got up and decided that as it soaked my arm that I needed a tissue.

Yeah. It wasn't boogies and it wasn't tears. My nose had been bleeding. Yep.. not just a little but like GUSHING.. LOTS LOTS. My hands were covered, neck, HAIR, shirt top and face and it was STILL coming. I turned around and looked at Dallas. I think that much blood was a little freaky.

Sad thing.. can't just get it off with a towel so after sitting on the toilet for 15 or so minutes trying to figure out if upright, tipped backwards or packed was the way to go we decided a shower with a packed nose it was.

In the shower it was slowing down but it was STILL running. It was horrible!! Oh and then the puke started. The blood was a little too much and so now it was coming out the mouth. YEP... THANK GOODNESS I was in the shower already.

So after about an hour it stopped. I sat up in bed making sure that it wasn't gonna start again. And off to dream land it was.

In the morning I had a headache and was super dizzy, Dallas let me sleep in and then I slept past the time that I was suppose to be there to get Tyler ready for school but I heard the bus and booked it to get him out the door.

I have really struggled all day. Emotionally I am not doing so hot and am feeling like I am drowning in more ways than one. My body Literally hurts from every joint in my body. I can't handle a few of the things going on around me so I tend to shut down.

I call the pharmacy tomorrow for my next shot. Emotionally I am not sure I can do it another three months. I just don't. But am I ready for the next step either?

P.S. This round I have gotten ever severe side effect. Estrogen supplements have been my friend but I am not thinking they are working ...... :(

I hate endometriosis!

I hate the fertility game.

I feel really alone in the ride.

Endometriosis Awareness- Get comfy :)

Endometriosis Awareness month is in March. Since it is pretty much the Middle of the month I thought I would share my story and my battle. In hopes of helping someone else and , well because it affects so much of what happens to us as a family and how my every day life is impacted.

Back in the day ( like Junior High) when all my friends were getting their period I was the "lucky' one who didn't. 9th grade came and went. Sophomore year came and went. Junior year came and ONE period came. I was 16.

My mom took me to the only OB in the area and we had a few appointments. At the time there wasn't much concern and it came about more like " Here, take these.They will make you have your period."So as a SMART 16 year old I thought " Why would I do that?

Senior year was a period every few months. Nothing like clockwork. Why? I wasn't going to make it come. It was painful. It hurt. It hurt A LOT. At this point I was living in a house with 2 people who had their periods and I was by far the "sickest."

College life started and we decided to go to a doctor in Provo to see if there was something we could do. This is where I met Dr. Anderson. I seriously LOVE this man. He put me on birth control for several years.

In 2001, I was still suffering from weird, painful and horrific pain. Not just during my period but also during other times of the month. I grew a few cysts and things were looking a little more toward needing to diagnosis something else. The only way to diagnosis our next step was surgery.

Dr. Anderson was pretty sure that I had endometriosis. So surgery was scheduled and my first laproscopy was preformed.

At 21 I was officially ( because you have to have surgery to actually GET the diagnosis) diagnosed with Endomtetriosis. I was told that endometriosis can cause infertility and that having babies was usually a cure but getting the babies there was tough. I was told get married, have babies and feel better.

My solution in 2001-2002 was head off on a mission with birth control in hand, ready to take on the world. Instead, I got sicker. Around the end of my mission I knew the birth control wasn't working. So when I got home we tried my first round of depo lupron.

Depo lupron is ROUGH. It is not a pretty drug. I moved to Logan and would drive down after 3 months for my very last shot. And about six months later. We found me BACK in the OR getting my second Laproscopy. This was around October of 2004. Again the joke was to go get pregnant... and get pregnant soon.

By April ( six months) after surgery Dallas and I found out were were expecting a baby. I was using the Nuva ring at the time but apparently either user error or luck we were still expecting.

We had a lot of complications with Tyler. Not just his early birth but we found ourselves in the OB office a few times a month with bleeding and placenta previa. The Placenta previa was found to have "resolved" when we switched OB's right around our 18th week. (While we don't know for sure if that is true it doesn't change our end result. )

When we delivered Tyler at 25 weeks and 3 days it was not "because" of anything. We have an unknown cause of premature delivery. But the delivery was traumatic for not only me but for my body. While having a C-section I had a contraction on Tyler's head so a vertical cut was made on my uterus. I developed blood clots that resulted in my wound having to be reopened and a three week course of a nurse coming 2 times a day to unpack and pack my wound. I ended up on a wound vacuum that would be changed 3 times a week at a wound clinic at LDS hospital. Then I would need reconstructive surgery on the wound because it didn't heal all the way.

All of those things resulted in scaring on the inside of my body known as Adhesion. The more scar tissue you have inside the more hurtful it is. I was put on an IUD and had been off and on birth control along with the IUD for several years after I had Tyler. I also did another six months of Depo lupron at that time.

In March 2008 I went in for my third laproscopy. This one was so nice! I felt so much better. The above mentions adhesion's were really bad. My uterine adhesion had stuck to my sciatic nerve causing pain when I walked. I also had adhesions on my bowels and bladder which they were unable to remove due to the risk that would happen with them touching and removing things in that location.

I had several endometrial spots along with an endometrioma that was taken out. I have since had 2 other enometrioma's that have resolved but are very painful.

In April of 2009 we decided that we really wanted to add another one to our family. Although all was cleared with our perinatologist, as chance would have it, we can't. Because of my endometriosis we have secondary infertility.

December was pretty rough and I found myself with some dysfunctional bleeding. That resulted in yet another round of Depo lupron which has brought us to now.

Having endometriosis has not been the easiest thing for me. Growing up I wanted to have 12 kids. Obviously after our eventful pregnancy with Tyler that wasn't an option but the spiritual, physical and emotional need and want for another child is still there. Yet the physical ability is hindered by having endometriosis.

Though our "trying" only went on a year a ultrasound and pain showed that my endometriosis is back. Because of the condition of my uterus and the adhesion's on it I am not able to have surgery this time. Yes it might make the fertility issues go away, it would also put a child at higher risk.

Another really not nice side effect of having endometriosis is having IBS. Yep. I can tell when things are not working right from the endometriosis because of how bad the IBS is. There is nothing that I can do or anything a doctor can do.

The side effects of the Depo Lupron leave something to be desired. Hot flashes, bowel problems, migraines, severe body aches and joint aches, weight gain, and depression. Sometimes I wonder what is better.. the pain or the side effects. Taking the medication doesn't guarantee that the end result will be what we want.

The only cure for endometriosis is a hysterectomy. So in good sound mind, the next one is it.

Please take the time to read the links that are on this blog. I hope this gives you a glimpse into me and our struggles and our triumphs.

You remember this?

SERIOUSLY! A little more comfortable. Who are you KIDDING!

And Really doesn't it look like the chicks are gonna kiss... Yeah that is comfortable.

Anyone in their right mind can tell you a landing strip in their undies is not MUCH more comfortable. The only thing more uncomfortable would be an aircraft!

"Crappy!"

A few weeks ago I posted THIS and we went in and got the shot. The dysfunctional stuff has now turned into HELL! Along with some other things that have come up I am really really struggling. Emotionally it is really hard to understand that something you were designed to do doesn't really "work." It is hard to just sit in pain every single day physically and then add an emotional stressor with it. The Depo lupron has taken me for a ride along with all the other things that I was not expecting.

I really should have tried super hard to buy stock in Kotex!

Dear Depo Lupron... I hate you.

It hasn't even been a week and I am not sure if I can last 3 months let alone 6. I got my "first" round of Depo Lupron Monday. I have been nauseous, irritable and moody and emotional. And we haven't really even started yet.

So the back ground you ALLL want to read. When I was 16 we figured out that I was not "right." Most girls had started menstruating in Junior high and even elementary. But I was the lucky one. I was a junior in high school and NOTHING. We went to a doctor in Price and he gave me pills to start my period once a month. Are you kidding me? What girl would really want to HAVE a period so Junior year was kinda a joke. I wasn't going to make myself have a period. Senior year I had one periodically. Freshman year in college we got down to business. I found a doctor up here because when would have a period it was debilitating. I was SICK and couldn't get out of bed. I would throw up, cramp and the works.

So at 18, no real cycle, and debilitating symptoms we found Dr. Anderson. He is the jolliest man in the world. He is like a Santa Clause in a bow tie. Dr. A fixed my problem for the time and gave us some information about endometriosis. He "suspected" at that time that was what was causing my issues.

At 20 I was getting ready to go on a mission. And I was getting sicker. We opted to go the surgery route and my first Laproscopy was performed. He would take out what was there ( and there was stuff there) and sew me up and send me on my way. I felt SO much better.

I was on birth control for a while, then went on my mission. Things were going ok and until I got home the birth control worked. After a while we needed to switch it up a little and we started on continuous birth control. No period until my body broke through the birth control.

When the break through started it wouldn't stop. I was home from my misson a few months and our next step was depo Lupron. So I started my first round EVER. It was not so bad. I had horrible hot flashes. The biggest was the weight gain. But I had no choice and I knew I needed to do this.

I finished my first six months and moved to Logan. Not long the depo lupron wore off and after six months I needed a laproscopy. In October of 04 I had surgery. I was 24. By this time I am getting frustrated about this disease. It makes me sick A LOT.

In April 2005 I get pregnant. Something I was told would probably never happen. We were on NUVA ring as a continuous but some how we still got pregnant. Having a baby helped tremendously and it took about 2 years before I got sick again.

In 2007 we started another round of depo lupron. We would do this for 9 months before finding some large endometriomas, or masses of cells in my body that look like cysts or tumors. They were horrible and pretty painful. I was getting sicker. So April 2008 we did another surgery.

So a small side note: When I had Tyler the circumstances around his emergency delivery made my csection a mess. I had a transverse cut UP my uterus so I have scaring from that, and I also have some major scaring around the bikini cut that had to be redone as well. So my uterus and surrounding area is a big ball of adhesion's and scar tissue.

In the surgery in 2008, they found endometriosis and some really really bad adhesion's. Those adhesion's can be found on my bladder, bowels and my sciatic nerve. It makes my leg go numb. Then adding the regular endometriosis I am not a Happy person a few times a month.

They were able to remove a lot of them. But knowing that with a uterus still there it will always grow back. So we did another round of depo lupron after and I was able survive.

We were off birth control and "trying" to get pregnant for over six months and nothing. But I did have a cyst and another endomtrioma instead. We opted to not keep trying and get help first. Moving back to Utah let us come back to my doctor and he has jumped in full force.

The end of December I started bleeding through my birth control. It went away for a week and then it showed back up with a vengeance. It was not nice. So after 2 weeks of bleeding Dr Anderson didn't give me a choice. He said I have dysfunctional uterine bleeding. He needed to get it stopped and we needed to decide to have a baby or not to.

To get the dysfunctional bleeding to stop I have to take depo lupron. See the trend. Its HORRIBLE.

So that brings us to Monday. The shots came in and we are ready to go for 3 months. The side effects are certainly showing their face. I have less patience with my family. Dallas gets snapped at and since Tyler is not being Tyler I am going crazy.

The side effects are yucky. And for the first 3 weeks of the shot you feel really bad. Like REALLY bad. In fact you kinda feel pregnant. The weight gain comes and the snackies come. And then the hot flashes... Oh joy.

I am not ready to give up my uterus yet. I am not ready to let go of the dream I have. It is such a hard thing sometimes to know you are broken.

But man depo Lupron.. I still hate you!

I am sick

I had this idea in my head of how everything was suppose to be. How the future would be. What the future would be. I imagined my kids growing up, playing, moving out, getting married and being on their own.

When I was getting ready to get married we talked about when and how many kids we wanted. We had once said 3. Then we got pregnant and it change to one! But being pregnant you still had those dreams. You have ideas and desires for your children.

I didn't think it would be hard to get pregnant. And well it wasn't "hard' the first time cause we weren't planning on getting pregnant and we were on birth control. So a pregnancy was surprising and yet very welcome. We wanted this baby.

Our dreams started then and soon they changed. 4 years after that baby they have still changed. But our dreams are more fuzzy now. We don't have the luxury of looking ahead to a wedding, when we don't know if he will ever talk.

Then comes up the questions of another baby. We did try. It didn't work so well. And we decided that maybe it wasn't the right time. And now, I am sick.

It is not a new sick. In fact it has kinda been around awhile. But we get a lot of down time when I get certain medication or it flairs when I am off the medication. I was off the medication because we wanted a baby. And now I am sick.

In Feb. 2008 I was taken into surgery to remove my endometriosis and they found a large amount of adhesion's from my previous surgeries and from my c section. The adhesion's and endometriosis is around my bowels, bladder and a few nerves in my leg. It was fixed for a while.

But it is back. I hurt. Though it is not chronic debilitating pain it is not pleasant. Knowing they can fix it is helpful. But how much is it going to take to fix it?

At some point the only option we will be left with is hysterectomy. That means the rest of the dreams of one more baby. A full term baby just might not be possible.

I am not sure I am emotionally able to take that step. Tomorrow, I go to my trusted doctor. To check on the endometrioma that is growing and take some steps to feel better.

Migraines, hormones and tears

Since around July 11Th I have had a headache. I would go to bed early, I would drink a coke, I would have stood on my head if I thought it would help. Some days were better than others. Thursday it hit HARD. Not just a little headache but one that got so bad that putting my head in a vice would have felt better.

It really seemed that Thursday was the day that EVERYTHING hit hard. The day started out with the small headache and I thought it would go away so I started on my daily actives. Thursday activities included Swimming lessons and a trip to my OBGYN. As I got us out the door for swimming I realized this headache was not a normal headache but I tried to wish it away.

Swimming went well and Ty loved it. Every second of it. He LOVES the water and loves that he can go under the water and climb out and jump and all that it entails. We headed after swimming right over to my docs office.

While in my docs office I realize I am NOT feeling well but I figure if I hurry we can grab lunch and take a nap. Ty had a total meltdown in the office when they brought in the shot that I was going to be getting and so I was singing to him and playing itsy bitsy while my bum was hanging out to get "the shot" of hormones that will turn the next three months into more of a sauna and well, basically into an old menopausal women. My headache at this point was so bad I couldn't remember all the medication I was taking or what i am on or not on. Or what my name was for that matter.

As we got home I figured that the headache would go away. We ate lunch and we had a crabby bubba so we headed down for a nap. A little bit after we laid down the door bell rang. Ty had OT. I canceled because I was NOT feeling well and we ha just laid down. I schedule next week and lay back down and the door bell rings again. It is our speech lady. By this time Ty is awake so we do speech and the headache didn't get wished away.

Speech ends and my respite worker gets here because Dallas is going to be hanging out with his boss from California was in town. I then realize that I am going to be spending the night on the tile in my bathroom. I call in sick to work, my respite worker takes Tyler out of my house and I strip nude, turn on the fan and fill a ice cube ziploc around my head.

I make the mistake at this point to check my mail and check my blog updates. I find and upsetting post and the tears flow. I have no where to turn with my frustrations and I am not feeling well. I am just glad that my sweet boy was gone so I didn't have to deal with him having to see me so upset.

I was so glad to have my sweet boy back and was able to get him to sleep and I had calmed down enough that I was able to enjoy him. I still had a headache and was so glad when he easily went to bed. ( I say that with all the love of a mom because I was ready to spank his behind) He hates going to sleep for mom.

I was able to talk stuff over with Dallas but still felt very betrayed by the post that was written. I sleep as much as I can and I wake up the next day with a headache that is dull but there. We have a play date and we go and enjoy the morning. I am hoping that Dallas gets the vibe that I need him to stay home with me.

The play date was just what I needed emotionally and my "friend" just gets me and I love her. Dallas gets that I need him and he stayed with me. I get an appointment with the doc and he sends me home to sleep.

That leaves me to right now. I have a SLIGHT headache but overall I am doing so much better. I am getting ready to turn in for the night. Dallas is still the loving most caring person in the world. I am still horribly disappointed in the post and I feel totally betrayed by 3 people this week. I am sad for them.

I love that I have what I have. I have Tyler who is the sweetest most amazing miracle baby in the world. I feel sad for those who never get to experience his sweet spirit. That they can't "get" why someone would be upset when you say mean things. I am glad that I have all that I need to fit my basic needs. I feel sad when I am lied to about meeting those needs. I am glad that I have a family. I can't see my family in need and I not try and share what I have.

Stay tuned. Tylers FIRST friend birthday party!!

Next baby is on you Granny!!

OK so as I sit here in pain from my endometriosis ( YES AGAIN) I found this story. A grandma in her 50's became a surrogate to her twin grandchildren. That's right .. she carried her own grandchildren. They went to term and they were born happy and healthy. And.. they live here in Arizona.

So granny... Next time you think you want more babies from us, is your uterus for rent?

Thought I would share. And no I think we will carry our own.

Its super late here and I need to get to bed. There are lots on my mind the last few days. Not even sure where to put them or how to arrange them to make sense.


The prophet passing has been a strange and some what sereal feeling for me. He was always such a comfort when he spoke. He spoke at the MTC while I was there several times. I was there for such an amazing time and he was such an amazing teacher. We are so lucky to have had a prophet that loved us and was so devoted.


I have been thinking alot about Tyler and the future.He makes me so happy that I am so content with him. I love watching what he has become but what will happen as he grows. What will we have to face? Only time will tell for sure.


I have been thinking of my family and the things that have happened for the last 28 years and how they hvae affected me. Right now it is not a good impact. I feel like damaged goods. Like a large piece of baggage that I can't seem to lose. The seperation has been good.

Dallas... Oh there are so many wonderful things to s ay about him. I think of him all the time and I miss him when he is not near us.I push him away though. One thing he said to me a LONG time ago was that I don't reach out to hold his hand. He is always doing it. It was then that I realized how much I have been pushing him away. He does however allow me to think for myself and allow me to be me. He is so supportive.

My surgery is weighing heavily on my mind. I am sure it will be fine but it is scary. I am terrified of anyone touching that c section cut. It is horrific to think of doing it again... but knowing that I need it to feel better.



Ok that is my random thoughts for the night.

For those that are wondering my surgery is scheduled for Feb.21st.