Too much pee...

Boys pee standing up, and I am sure they do this mainly because they can, but I am sick of cleaning up pee on and around toilets. Why can't boys sit and pee and NOT make a mess-everywhere?? I am sure it is going to be so much worse when Trey is potty trained (we are no where near that-he probably won't start potty training 'til he is well over 3, he is still not speaking at all), but then I will either have to hire a maid to clean the toilets or beg Stephan to do it. ;)

I hate cleaning toilets....
The end of my rant :)

Hmmm...

I have had to begin blog censoring. I hate that, but apparently how I feel MAY offend some people. I am very sorry if I have offended anyone in the past, but this is how I let out how I feel. I put it on here so minimal bad feelings and frustrations are shown near my children. Ryne has no idea how frustrating Trey's hydrocephalus is. He has no idea that sometimes Mommy becomes so overwhelmed I cry myself to sleep. I USE this blog to get it out there. Maybe I need a private blog, but then that would not get my frustrations out for people to semi-understand what my family goes through.

Why I am here why do people feel that just because they have more kids than me they know how to raise mine? Trey is so special and things pertaining to him are very different than any child, even another hydrocephalus child. He goes through a lot and I work my hardest to make sure he gets through every day and every night with as little pain, discomfort or crying as possible. (Seriously have you ever cried while you had a migraine-it is not fun and extremely painful.) That is NOT to say I give him everything, I still teach him "no" and that he may not do whatever he wants. But I also know his "special" cry that means I immediately go get him out of his crib or pull him from whatever situation is causing this cry-crying it out is NOT always a possibility for a hydro child. Seriously would you make your child cry it out if at 5 months they had brain surgery and a tube shoved through his body? I don't and if you think I should I will respectfully disagree, and do what I know is best for my child. Now when it comes to Ryne maybe Stephan and I made (and will probably make more) bad decisions while raising him, and you wouldn't raise your children the same way-but he is OUR child. You may share what you think, but we are devoted to how we choose to raise him. We love him to death and he is the sweetest most loving child I have ever met, all negative attributes of him are something we will handle as a family (and yes I will be the first to admit he whines and is very emotional.) Yet again you may share what you think but we are GOOD parents and we LOVE our boys with everything we have. I don't expect people to know what we go through every day with Trey being a "special needs" child, but please don't pretend that you do know. I had no idea what hydrocephalus entailed before I was blessed with Trey Alexander, he has taught me so much mainly being patience and flexibility. But he is different than a typical one-year old.
This rant is brought on courtesy of a random person I don't know or want to know.

Okay I am done and ready to go outside and blow bubbles with my boys while they run around the playground ;)

Scary day

Trey is normally an extremely happy baby. He sleeps about 18 hours a day, eats whatever we give him, and laughs and plays with no whining. Three days ago that drastically changed. He became a baby I did not know. He barely slept 8 hours a day, he would only eat 1 small meal a day-he only wanted milk, and he cried. Not just a normal cry but the pain shrill cry he had before his shunt placement.

After only getting 3 hours of sleep last night and Trey seriously whining/crying ALL night long I gave in. I called his doctors. The problem was which doctor-he has so many! I started with the neurosurgeon then e-mailed his pediatrician. At the same time they both called me. Both doctors told me to take him to Children's Healthcare Emergency room immediately. It sounded like possible shunt malfunction and test needed to be done.

So I packed up both boys, Stephan was headed out the door for work and didn't have enough time to find someone to cover his shift (he felt really bad, but seriously in this economy we are so thankful he has a great job, we will not do anything to challenge that.) So I called my Mom and she said she would meet me so she could watch Ryne while I concentrated on Trey. So many things went through my head, but mainly I prayed no more surgery, that Trey would be okay, and I would get my amazing little boy back.

Can I just tell you how horrifying this ER trip was!?!?!? A CT scan and shunt series (by x-ray) was ordered. During the CT scan he was strapped down by a straight jacket type of thing, he cried but it wasn't horrible-there were times when the machine intrigued him and he was calm. But then we went to the x-ray for the shunt series. This is where my heart broke. It took FOUR grown adults to hold my child down-and you really had to use your muscles-he is a strong little guy. He screamed, cried, threw-up and looked at me with this look that said "Mom-Why are you doing this to me??" I felt so bad. My Mom and Ryne who were very far away in the waiting room, heard his screaming the whole time-Ryne cried for his brother. I felt just horrible.

The Doctor came in and said Good News!! His shunt was performing perfectly, he did have a little enlargement in his ventricles which was causing migraine type headaches, but he will be fine. I was relieved yet felt horrible at the same time. I had put my little boy through all of that, and for no reason. My silver lining was he slept great on the way home and as soon as I put him down, fed him some applesauce and he was seriously happier than I have seen him in a long time. He was so playful and fun-I almost didn't want to put him to bed!! But this momma is tired!!!

I've made a decision....

to remain indecisive ;)
We are still toying with the idea of moving back to Florida. I have found my DREAM job there and I know I would be great at it. The city that has this job it also hiring 10 police officers right now. AND we found some great foreclosure homes there for as little as $50,000. Sounds great right!?!? Well there are a few problems...
1) The agency hiring police officers is not necessarily the one Stephan wants to work for. He is familiar with another agency in this town, but they are on a hiring freeze. A "higher-up" for that agency said for Stephan to go ahead and put his application in and when the freeze is lifted (which could be soon) Stephan would be considered. BUT Stephan is a little lazy when it comes to change and moving. He is not 100% sold on moving, because he is so comfortable here. He HATES change, so why would he do work to seek it out-that is his thought...
2) What if I get hired and Stephan doesn't get hired at the same time. That would mean our families livelyhood would be solely based on my income (and I wouldn't make near as much as Stephan would.) And with him not having an income we could not afford to move. I have searched all over Georgia for a similar position for me, but I have not seen anything-for my last 6 months of searching.
3) and this one is VERY hard for me to admit-we have bad credit. Like really bad. When we decided to move to Georgia we got caught up in the LARGE beautiful houses and bought WAY beyond our means (not to mention we had 24 hours to find a house and sign a contract while I was toting around a 5 month old, and Stephan was doing stuff for his now employer-that was a lot of pressure on me.) We made the WRONG decision and wound up foreclosing on our home. I am so embarassed to say this and very few people know about this. But our mortgage was over 50% of our income. We are very bad with money and are trying to get things in order now, but it is hard. We have medical bills from all of Trey's medical stuff. We had to take Ryne out of private school and put him in public to save money. We like to give our kids whatever they want/need. I do well saving money for groceries, but that is where my savings ends.
So my point is we would NOT be approved for a mortgage with both of us having new jobs and a foreclosure so recent on our credit history. So we would have to rent I guess, and we are renting in Ga for an extremely discounted rate. For the houses I found that we like we could come up with 5% for down payment, and afford a mortgage that low, but where do we get money to fix the house up (new carpet, some don't have applinces, new paint,etc., etc.) Most of these homes haven't been lived in for awhile so they def. need some TLC.

So we don't know what to do or where to start. I don't want to feel STUCK-like I do right now. I see no way of making this change and I hate feeling that way.

Trey's story of strength and survival...

This is long, but so are the journeys Trey has been through! If you don't want to read it that's fine, but if you do read it PLEASE leave me feedback. I wrote this to be published in a book of hydro stories a friend of mine is putting together....

Trey’s Story

I am made to be a mom. I love having kids, being married and believing I can help make this world better by raising amazing well rounded children. With the birth of my first son Ryne Carter November 18, 2004, my dreams were fulfilled. It took us 13 months to conceive him and when he was born my heart was fulfilled. My husband is a police officer and I worked for the State of Florida as a child welfare counselor. We had seen so many children hurt by their parents’ mistakes, selfishness, and ignorance, we knew we would give our children everything they needed and would live for them. Ryne was an amazing baby. We loved him with all we had, but our family still did not feel complete. When Ryne was 16 months old we decided we would try to expand our family. It took us 2 years to conceive Trey Alexander, the pregnancy and Trey’s life was a struggle from the beginning.

At 6 weeks pregnant I began to bleed, so I went to the OB, everything looked okay, but he wanted me to come back next week for another ultrasound. I continued to bleed and went back for a follow up ultrasound. At this appointment my life changed forever. I was told my baby had died and I needed a D&C. I was devastated. My husband, a courageous strong police officer, had lost a part of him. My mom who was with me at the doctors kept saying “maybe everything will be okay, you never know.” I yelled at her. I told her my baby was taken from me and I didn’t want to hear her false hopes again. My baby died and I just wanted to deal with it. The day before the scheduled D&C I went in for one last ultrasound. As soon as the machine was turned on I saw him. I said “Wait, there is a baby!!” No one said anything, after what seemed like 15 minutes the doctor said “In my 20 years of practice I have never seen anything like this, your baby is measuring perfectly and has a heartbeat.” I sobbed, my mom cried, even the nurse began crying-My baby was alive. I was told I had a subchorionic hemorrhage, it was very large and it was possible that while my body was shedding this “blood sac” it would “shed” the baby also. I refused to bond with my baby; I thought for sure I was losing him-Again. I bled for 5 months, at one point going in for an ultrasound the doctor said the baby’s umbilical cord was connected on the side with the bleed and he may not get the nutrients he needed to survive-yet another reason not to bond with my baby. Around 6 months I went in for the anatomical ultrasound and I saw it before anyone-I announced to everyone in the room “It’s a Boy!!!” At that moment I knew he would be okay and he was mine. No matter what he was my heart. He was perfect, the bonding began immediately. The remaining 3 months of the pregnancy went by with no problems. It was a perfect pregnancy from that point on. Labor was difficult, I had delivered epidural free with Ryne and was determined to do it again with Trey. After laboring for almost 2 days, and finding out my baby was coming out the wrong way we opted for an epidural. It was perfect! I felt no pain, but could feel when to push, laughed during pushes-it was wonderful. After I received the epidural the doctor did an internal turning of Trey. He warned us when I gave birth the baby would have a large head and be a big bruise due to turning him. But we didn’t care-Trey was absolutely perfect when he was born. An amazing 7lb. 8 oz. baby boy as beautiful as he could be. Due to the extremely large bruise he developed jaundice (his body was unable to break down the red blood cells from the bruise) and was on phototherapy lights for 7 days, taken to the hospital daily for heel pricks, he had a total 13 heel pricks since his birth. This was a rough time for us; I developed PPD so my husband had to take care of Ryne. But our strength as a family would be tested again. All I wanted to do is get Trey better, he was my focus. Finally we got the phone call his billirubin levels had normalized and he could come off of the lights. I held my baby boy for 18 hours straight, I couldn’t put him down. He was finally healthy and here, and in my arms. Nothing could happen to him now. Little did I know I would fail him again, I would fail at keeping him safe, and I would fail at keeping him healthy and happy.

Trey cried non-stop. It wasn’t a normal baby cry, it was a shrill high-pitched scream, and it was constant. The only thing that would calm him was drinking formula, he refused to breastfeed. He didn’t want to be held, he didn’t want to play-he only wanted to eat or cry. And his head was growing, faster than any doctor liked. Faster than it should have, his head was so big he couldn’t roll over, he couldn’t hold his head up. At 4 months we were sent to a neurosurgeon. The first visit a CT scan was ordered. The neurosurgeon said he did have large pockets of water on his brain, but it was believed he would grow out of it. At this point I had a chunky monkey! We went for a follow-up visit 3 weeks later and his head had grown almost an inch, an MRI was ordered. This scared me. This is pretty serious, up until this point we had no idea what to expect. We loved our baby boy; he had already been through so much did he really need more tests? Tests where he had to be sedated? What were they looking for? We had no idea. We were lost, we couldn’t protect our little boy, and I failed as a mom. The MRI had shown his pockets of water were exponentially bigger and surgery was needed. What? Surgery? For what? We were told he had hydrocephalus, I did research and it scared me to death. Well what little research I could find. In my head Trey Alexander would be on feeding tubes for the rest of his life, unable to walk or talk. He would never be a “normal” child. The MRI and diagnosis came on Tuesday. We were scheduled for surgery on Wednesday May 27, 2009. Wow! That was so quick my head was spinning. What would happen to my precious angel, would he even live through surgery?

Waiting in his room with the machines, tubes, and a little hospital bed for 2 hours was horrible. I was told the surgery would last 45 minutes, so of course I though something was terribly wrong. He came into the room and what I saw was heart wrenching and horrible. My baby boy who was ONLY 6 months old was swollen, bloody, stapled, confused, and stitched. I was in no way prepared to see my son like that. I held him to calm him down and all I could think about is why did this happen? What did I do wrong to make him go through all of this? It was my fault, maybe I didn’t eat the right things or maybe I didn’t take care of him like I should have. I am a great mom, and I know that, but seeing your child in this state all you can do is blame yourself and search for answers. He was so young, and he would never lead a “normal” life. He could never play football, no karate, he may not be able to follow in his daddy’s footsteps and become a police officer, he may not be able to talk or walk, and he would always need to be followed by a neurosurgeon. What have I done to my child?

But Trey was alive, and was still my beautiful little boy. I didn’t know what the future entailed, but at that moment he was okay. He was my heart and no matter what happened in the future I would always be his mom, and I would always be there for him. When daddy saw Trey after surgery tears filled his eyes. In the 11 years I had been with him I had never seen him cry. His heart ached for Trey as much as mine did. When Ryne saw Trey 4 days later he looked past the staples and blood and squealed “Mommy Trey isn’t crying!! He is smiling! Look at him!!!” I needed that; I needed to see Trey through the eyes of a 4 year old. I needed to see that my baby is finally going to be okay.

Today Trey is 14 months old, and he is amazing!! Yes, he does have weekly physical therapy, bi-weekly occupational therapy and will begin speech therapy soon, but his growth and abilities are astounding. At 10 months he rolled over for the first time, and at 13 months he took his first step!! He can now walk 10-20 steps at a time, last week he said his first word “dada” (of course, why is it never “mama”?) He can feed himself, self soothe, he plays independently, drinks out of a sippy cup, and bring a smile to every ones face who meets him. He is simply adorable! He does have a few medical issues, but so far his shunt is working perfectly. There are times when it becomes overwhelming. Thinking about how Trey will be effected by hydrocephalus for the rest of his life, but we are taking it one day at a time and are so thankful for the wonderful, healthy, happy, vibrant child we have been blessed with.

There needs to be more information about hydrocephalus. There are so many unknowns it is an extremely scary diagnosis. Family and friends who know of Trey’s diagnosis think great, he has had a surgery, so he is fixed forever. No one knows this will affect him forever. No one knows there is no miracle cure, and Trey will forever be changed due to this diagnosis. Hydrocephalus is diagnosed as often as juvenile diabetes, but the research and funding is no where near that of juvenile diabetes. This is major. My son has had brain surgery, and will most likely have it again in his lifetime. More needs to be done, more answers need to be found.

Thanks for reading, thanks for caring, and most of all thank you for your support!!

OMGOSH!!!!

I almost forgot to share... Trey Speaks!!!!! At 13.5 months Trey Alexander said his FIRST word!!! Well he said da da da da da da da..... But I count that as a word :) I'll take what I can get :) He will still need to begin his speech therapy-Yay another therapist :( BUT it means he is finally getting this stuff :)
Did I forget to write earlier he took his first steps last week!?!?!? He can now take about 15 steps and who cares if he looks like Frankenstein while walking.... It is so cute and he is totally proud of himself. I need to get new DVD's for the video camera so I can catch this for you :)
I am so proud of our Trey Trey-he is such an amazing baby!! He also has 3 teethe starting to break through and just had 3 completely break through-and you would never know he was teething, except for the BUCKETS of drool. he has not been cranky at all, he is still sleeping 13 hours a night and keeping up with his 4-5 hours of daytime naps-YAY for sleep!!!!! My kids are awesome, whether I am a crazy mom or not ;)

Why are my kids so emotional??

I don't know if I have done something wrong-likely- or they were born this way, but my sons can cry at the drop of a hat!! If Ryne cries then Trey is VERY quick to follow, heck if anyone cries Trey starts hysterically crying. I mean can't breathe, tears flying, burying his head in my chest, screaming crying. Weird!?!? If you look at Ryne and start to talk to him and he doesn't want to talk or is embarrassed he starts whining and crying. Seriously WHAT am I doing wrong???
Stephan and I decided in Ryne's best interest to pull him out of his private 4 year old "pre-school" and put him in state pre-k. His 4 year old class was 3.5 hours and pre-k is 7.5, this is a HUGE transition for Ryne, but we figured we would start the transition now rather than wait 'til he was in kindergarten (which is 7.5 hours also.) I mean he is going to have a lot of changes when he begins kindergarten, so the class length difference and larger classes can be tackled now. So far he is doing really well, he actually comes home with "homework" (which is actually something he makes up and does on his own to show his teachers-he really loves schoolwork :), I asked them if I had missed the assignment and they said no, he gave himself homework-he is so cute!!) But the LONG days are taking its toll on him. I know he just needs to get used to it, I just feel really bad. Not to mention they provide breakfast and lunch and since Ryne refuses to eat ANYTHING he is starving when he gets home, to the point he is sick. Talk about feeling like the worst mother EVER!! He just needs to eat more foods, and I am hoping this will make him try more stuff, in the mean time I will just worry myself to death that my son is going to waste away, and cry myself to sleep for being a really bad mom.
Sooooo... when we switched his schools we switched his Karate class, so it was closer. Well his new one is much more intense and disciplined. He was really lost in his first class and just started crying, had to leave the class. I felt really bad for him, but then Trey started to cry and I felt really bad for me. Why are they so emotional??? I Just don't get it...

He loves me...He loves me not...

Okay I KNOW my husband loves me! I just do. BUT I feel like he doesn't ever show me he does. He says "I love you" every day before he goes to work, when we hang up on the phone, or when I rub his shoulders ;) But sometimes I just don't feel it. He is a BUSY man!! He works about 60 hours a week so that I can stay home with the boys and he never complains. He loves his job so much, but there have got to be days he doesn't want to go-but he has NEVER said this to me. He has been a police officer for 7 years and I believe he is MADE for this job. It is funny because those that know him from high school/college can't imagine him being a policeman, but he is so good at it-Really!! Last week he got the ribbon of valor from our county and he is up for a major state award (can't remember what-I know, bad wife...) , but still some days he must want to stay home and in bed, but every day he gets up without complaint and goes to work with a smile on his face. That is GREAT to see as a wife, that your husband is so happy. But I feel like I take a back seat to his job and our kids. Horrible I know, and my head says I am first in his life (after God, of course) but my heart isn't so sure.

This all started when I saw a high school friend of mine post that his wife is his Hero. Seriously how sweet is that!?!? He is an amazing guy and was such a good friend in high school, he has been blessed with a gorgeous wife and beautiful son (YAY Jeremy!!!) I know if Stephan had a facebook account his status would never be something as sweet as that. "I punched a guy in the face today" would be his status. And that's okay-I really am so proud of him, he may be small but he has got some MAJOR fight in him :)

I knew he was not a romantic type when we got married, and that was okay. (Well one time he bought sweet note cards and every time I went out to my car-after work, after class, in the morning-I found these sweet words and my heart melted, but that was like 11 years ago...) Just sometimes being home with two little boys and crusty food and snot on my shirt makes me feel like less of a wife and more like a burp cloth :)

I am not complaining AT ALL-I just wonder if more husbands are like mine. Will do everything in his power to make his family secure and provided for, but can't write a love poem to save his life....


And isn't he just TOO cute!?!?

MORE doctors-Ugh!!!

We switched insurance companies this year-not really happy about it, but what are you going to do?? Gwinnett county made a decision to switch insurance providers so here we go, trying to get all of Trey's medical stuff covered under the new insurance company.
So we went yesterday for a "well-check" to get Trey's new pediatrician in-tune with him while he is healthy :) He also had to get one shot that they were out of at his 12-month shot appointment. Well I sit there and go through EVERYTHING Trey has been through in the past 12 months-that was a bit emotionally draining, I never would have thought....
The ped. is requesting Trey see an audiologist for a hearing test and follow-up with a speech therapist. He feels Trey is pretty far behind speech-wise and doesn't want him to get much farther. So YAY another specialist-NOT!!! He also had blood drawn to check for anemia (normal test at this age), allergies (he has abnormal amounts of blood in his stool-allergies *may* be the cause), and to check his thyroid (this has been recommended by everyone that meets my little chunky monkey ;) so as we were getting his blood drawn the first nurse missed and rolled his vein. He was so upset, but the HUGE guy who took over was so gentle and sweet and got it on the first time-very quickly ;)

I should have the results soon, but I think there is nothing wrong with him and they are doing these tests to figure out the big picture. His new ped. asked why/how Trey had hydrocephalus. I really have no answer for him-he is hoping to run some tests and follow Trey, to find out if there is any underlying causes/issues. I LOVE that! I LOVE that he WANTS to know what is going on, and that there are so many little things, he wants a thorough diagnosis. But I am just sick of doctors-as I am sure my little man is also :)
All of the speed crawling and constant moving Trey has been doing has resulted in a weight loss of one pound in 3 weeks-When he starts walking/running he will shrink in no time :)

Ryne is 5-need I say more?? He is defiant, doesn't listen, full of energy, and CONSTANTLY talks!! BUT he is amazing, extremely intelligent, and motivated!! He starts t-ball in Feb.-Thank God!!! He HAS to be in sports or he will blow-up from all of his energy ;)