The big Christmas round up, and a blown G button

On Thursday night Emily's dad proceeded to help us with operation re-design Emily's room. He picked her up for the day, and then she stayed the night with his mom, while Mike, and I worked. Mike re-painted all of Emily's furniture, and then we painted her bathroom. We then let all of that dry overnight, and then we tackled the decorating. The plan was to keep Emily out of the house until 5:30pm. When she arrived we would have all of our friends, and family over to celebrate Christmas Eve, and to watch her surprise. Right on cue Emily walked through the door, and we led her upstairs. I think she was a bit speechless. Jude did wonderful this Christmas, and I think he really enjoyed having everyone around. He smiled, giggled, and overall had a great time. My cousin, and her family, my friend Shelley and her family, My sister, her hubby, my dad, and Kay all joined us Christmas Eve, and it was really wonderful.

The next day it was rather quiet. Mike, and myself, and Jude's nurse Allan all stayed home. I cooked while everyone else did their own thing. Emily had gone with her dad again to his mom's house, and everyone just relaxed for awhile. About 6pm my family showed up for dinner, and we again truly enjoyed each others company. I feel very blessed.

Overall the weekend went well until this morning. About 4am Jude woke up screaming, and Mike took off to tend to him. I had been up several times, so Mike got up this time, and saved me from the cold house. All of a sudden I heard Mike yell, and Jude yell. I knew this meant Jude's button had popped out. Unfortunately, this time the entire button was blown, and we needed a new one stat. Mike got very stressed, and when Mike gets stressed, Mike yells. That's just how he responds, I hate it, but it's him. So he was yelling, I was trying to calm down Jude, and Jude was crying. Mike asked for the petroleum jelly to insert the tube back in, so I ran out to get it. Well I guess Jude wiggled, and Mike got upset, and suddenly I heard a very clear little "maaa maaa" I was excited he asked for me, but said he was upset. I said "mama is here, and I ran in to stroke his hair, and he calmed down". Mike was phenomenal even with being upset, and quickly got the new button installed. After we finished he said his chest was hurting. I am worried that he gets to stressed out in these situations.

Before

After

Before

After

One of the highlights of Christmas Eve, my cousin attacking Mike!

Precious! My friend Shelley's little girl Lauren. She kept telling Jude "up" and would tug on his hair, but she was so sweet to him. She would put her face right beside his, and just look at him. Then she would lay down beside him. She was just a doll.

This is Emily seeing her big present for the first time

I loved this video. This is my sister's dog who seems very distrubed by Emily's clarinet

and finally a video of Jude, and Mike.

Merry Christmas

I am working today, but there isn't much to do. Our corporate office is closed so there aren't any new updates, etc, but I am here if anyone needs anything.

Jude is at home with his nurse today, and he was all smiles when he woke up. He has been in a great mood lately, which is a blessing. I have really been trying to work with him on being vocal. When he looks like he wants up, or on his tummy, I ask him to tell me what he wants, and to let me know what he wants. He really tries to get some words out, which is such a huge accomplishment for him. He mostly just coos, or moans, but it is a start.

Tomorrow night we have a large crowd coming over for chili, and to just relax. I am really looking forward to spending time with family, and friends. My friend that just recently had the preemies is suppose to come over, and I am so glad! I hope she is able to relax a bit, although I know it will be hard.

If I don't get back on then everyone have a very Merry Christmas, and a safe holiday.

This is what happens......

This is what happens when your pre-teen gets her hair cut the way she always wanted.......God love her pretty little soul.  She confiscated my camera, and hid in her bathroom. I had about a hundred of these photo's, okay not a hundred, but maybe twenty.

and this is what happens when you put a singing Tigger next to Jude

and this is what happens when you try to put a cute little bear cap with ears on Jude, he didn't seem to like the cap as much as I did....

Tune in next time for more "This is what happens" episodes.

A sleepy Jude, a barking dog, and a prayer

It was a long night. For some reason I kept waking up every hour, and checking on Jude......and he was sound asleep. Just what I need, to wake up when the baby ISN'T awake, lovely I tell ya. When I finally fell into a deep sleep at 5:30 Mike's dog Lady (aka terrorist #1) started barking at the back door. She generally barks about 7am because she wants to be fed, but for some reason she was up early today. Mike shoo'd her back to her dog house, only for her to get up again at 6:30, and so on and so forth. I was very aggravated, and was plotting how to get revenge on the said doggy. Mike protested that she is just really smart, and knew someone was up in the house (turns out Jude was). Love the excuse babe, but I say your dog is just annoying, and has you trained very well.

Overall Jude seems to be doing well. He is still congested, but not nearly as bad as he was this weekend. He slept well last night, and when I came to see him this morning he was looking back at me smiling. I wonder how much goes on inside his brain. It's very obvious he knows who we are, and he responds to us. He smiled really big when I came into his room, and the fact he darts his eyes back to look over his shoulder to see me is reassuring.  He still wants to be on his tummy on a constant basis, and we all feel bad leaving him in that state so much, even the nurse. Although it is what he wants. We all hold him for awhile, but you can tell when he wants to be put back down again. We have always been scared to let him sleep on his tummy, but he finally got his wish the other night. He just would not sleep, so I put him on his tummy in his new bed, and he slept soundly without any issues. Mike, and the nurse are wondering if Jude breaths better on his tummy, and thus the reasoning he loves it so much.

So our nurse needs some prayers. It seems we have been surrounded by a lot of medical issues lately, and we have encountered another one. Her husband has not been feeling well at all. Well he went for an X Ray and he has white cobwebs in his lungs. This can be a sign of small cell lung cancer, and we are praying this is not the case. He is going for several tests this week. So if you can spare a prayer that he has something easily curable that would be wonderful.

The Very Special Gift

My friend Stacey shared this on facebook. Not many poems get to me anymore, but I liked this one!
The Very Special Gift
By S. Guevara
Once upon a time, three angels were busily working in the miracle
factory. They were responsible for wrapping up all the little
miracles and sending them on their way. Normally they wrapped each
one in bright, sturdy paper with big, shiny ribbons. They stamped
them with a delivery date and away they would go to the parents who
eagerly awaited their arrival. Things usually ran pretty smoothly.
One day, however, down the conveyer belt came a little miracle that
made the angels pause. "Oh my," said the first angel "this one's
uhm...well...different." "Yes, he is unique" said the second
angel. "Well I think he is quite special," said the first angel "but
I don't think he will quite fit our standard wrapping procedures."
And the second angel added, "And we know he's special, but will
everyone else?" "Not a problem," said the third angel "obliviously a
special miracle deserves extra special wrapping; and of course we'll
send him off with our most heartfelt blessings. Then everyone will
see how special he is." "What a wonderful idea!" replied the others.
So they searched the shelves high and low for their finest paper, and
their most delicate ribbons.
When they were done, they stood back and admired their
work. "Beautiful!" thay all agreed. "Now for our blessings," said the
third angel "for it is time for him to go." "I will bless him with
innocence and happiness," said the first angel. "And I will bless him
with strength to face the many challenges that lie ahead" said the
second angel. "And I will bless him with an inner beauty that will
shine on all who look upon him" said the third angel. Before sending
him off the third angel, who was very wise, gently tucked a note
inside.
And it said,


"Dear Parents:
Today you have received a very special gift. It may not be what you
were expecting and you may be disappointed, angry and hurt. But
please know that she comes with many blessings. And, while there may
be pain, he will bring you much joy. He will take you on a very
difficult journey but you will meet many wonderful people. He will
teach you patience and understanding and make you reach deep inside
yourselves to find a source of strength and faith you never knew you
had. He will enrich your lives and will touch the hearts of all who
meet him. He may be fragile but he has great inner strength.


So please handle him with care. Give him lots of attention and shower
him with hugs and kisses. Love him with all your heart and he will
blossom before your eyes. His spirit will shine like the brightest
star for all to see and you will know that you are truly blessed." 

Amen

Congested Jude

Well Jude has been fighting off the congestion I mentioned for a few days, but today he woke up very congested today. I have been suctioning him, using Benadryl, and more for hours. The congestion makes him want to retch, and earlier he threw up. Yep, that means he has blown his Nissen, but I don't think completely. The throw up was also laced with blood, but I am pretty sure that's from the congestion. I cleaned the poor little boy up, and took him for a nice warm bath. He absolutely loved the bath, and shows me so with big smiles, and giggles.

Once he was all cleaned up I took him for a nap. We both fell asleep for a little over an hour and a half. Emily had a Christmas party today, but I am afraid she isn't going to make it. I think Jude is doing a little better, but I don't want to get him out in the cold.  I was going to ask to send Emily with a friend, but I had fallen asleep with Jude, and didn't get to text her. Emily seems okay with everything, I think she is pretty tired herself, and she is just hanging out watching Christmas movies.

Tomorrow is another Monday, and the start of a work week. I am looking forward to the holidays, and watching my kiddo's enjoy their surprises.

It will all work out........I promise

It's been a whirlwind of a day, but one filled with lots of personal accomplishments. Let me start with telling you that Jude was up the night before last pretty much every hour, on the hour. About 5am I jabbed mike, and told him, "Your son wants you". At that point Mike knew I was done for the night.......er morning, and he took over said baby duty. I am unsure why Jude still has some sleepless nights, but it seems to be a common  issue with special needs children.  About 7am my alarm went off for work, so I jumped out of bed to get ready for the day. I ( hi ho hi ho) headed off to work, and to my surprise the day was filled with lots of insurance tasks flowing through my desk. Generally this time of year leaves me with a lot of time to daydream, so I was a pleasantly surprised that we were so busy. About 2:30 I packed my office up because I needed to attend to some outside sales calls. As I blazed through DFW I remembered the thrill of accomplishment when I am able to sell something I believe in so much to someone that truly needs it.

After my full time job I raced home to ready myself for my part time job. Rarely, do I schedule Scentsy parties on a Friday night, but sometimes I get a request for one. Tonight hosted one of those requests, and Emily graciously went with me to help. Emily was truly amazing. She knew I was tired and she helped set my table up, and  at the end she swiftly packed everything up with grace as I took orders. When I turned around and saw the table clear of my full set up I was shocked..........and so was everyone else. I smiled at the compliments that my daughter was amazing, and I simply agreed with everyone offering the sweet words. Emily just smiled at me with a cute little grimace, and I knew she was just ready for some good food. So we ran out the door with a wink, and a smile, and then into the grocery store to obtain her goodies. 

Once we got home I admired Jude sitting in his dads arms, and I smiled at the way my boy turned his head when he heard my voice. Then I realized I have gone from being a person that feared "mental retardation" to being so thankful for my sons accomplishments. My doctors used to use the words I put in quotations above, and I would naively repeat them on my blog.  I have since learned those words are full of resentment, acceptance, and ignorance. I am so very thankful for everything Jude can do, and more. His giggles, and smiles melt my heart, and I treasure each tiny glimpse I get at the inner most part of Jude. I realize he can express emotion, he knows who we are, he can express when he wants to be moved, and when he isn't feeling well. We are very lucky he can tell us so much.

I also realized I am so spoiled in many aspects. Today Jude received some money from his grandmother to obtain all new 3T clothes. This is because my son is the incredible hulk, and seems to bust through his pants every few months. Regardless, he still received money, and I put it to good use on my lunch hours. I have learned how to really stretch a dollar, and Jude has a gorgeous new wardrobe.

So what why do I think I have many realizations today? I have a job I am very thankful for. At a very young age something (fate) turned me in the direction of insurance. I now hold 3 licenses in the field, multiple awards, and over 18 years of experience........which means I am worth something :). I am also blessed because so many people booking Scentsy parties with me. Just when I think I am out of parties........someone calls me out of the blue. It's work, and a lot of it, but I am grateful. Today, my fortune cookie read,  "Don't worry.....it will always work out" Boy is that true.

Realization

I have been rereading my blog from 2008 when I was still pregnant with Jude. I am trying to put it all in book format. Not that anything would ever happen from it, primarily because I am a grammatical nightmare, but just to have it for me. While reading my prior posts I am so mixed with so many emotions. I was so naive, and determined to go against the medical field. When I read through what the MRI specialist said I just kind of shake my head...because she was 100% right. I had forgotten that she explained that she had only seen one other case as extreme as Jude's MRI after an ischemic event (his stroke). I kept repeating myself in my blogs, I kept bargaining with God, and begging that our situation would change. I shook my head again when I read how the sonogram scans were showing Jude's brain ventricles decreased in size, and how the professionals were saying his situation my have turned positive. Boy, I had no clue. I guess I just never really got what they meant when they said there is a chance he may be profoundly disabled. I kept holding on the the words "He may be okay", and by that I mean he would walk, talk, and not suffer seizures. I really had no clue what the word disabled meant, but who really does understand the full definition until you are confronted with it face to face.

Despite what we have been through Jude's situation has taught me so much. I would never take a healthy pregnancy for granted, and only hope that someday I may get to experience that again. I will never look through the disabled, and always acknowledge their presence. I have been taught patience, empathy, and strength. I feel like I truly understand what pure love means, and how joyous it feels. I am glad we made our decision to bring Jude into this world. He has probably made more of a positive impact on people than I even could think of making. He is our little Juders.

The Big boy bed

Jude got his big boy bed!!! He slept very well in it, and Em got him a puppy to celebrate the day. We were able to raise the mattress so his congestion drained last night, so he seemed much better this morning. It's amazing that it arrived at the perfect time. We are very thankful.

 and a picture my hubby Mike Ortiz Photography took of us:

A sickly Jude, and a band recital

Last night Emily had her first band recital. She plays Clarinet, and they have been practicing for some time. It's rather amazing because they practice in like instrument classes so they have personal experience with only their instrument. Then a week before the recital they bring all the instruments together, and coordinate for the show. I was rather impressed with how they sounded for a beginner band. I will subject your ears to a portion of the show.

So once we finally got home from her recital, ate, and cleaned up we were in bed about midnight. Before we put Jude down to bed he wasn't really acting like himself. He was crying, and doing this little momomomomo with his lips while crying. Well he woke up at two am............sick! Which means we never really went back to sleep, I am dragging tail this morning. It's like mother nature heard me say how Jude wasn't in the hospital this Christmas. I am keeping positive, but I feel horrible for him. I have been so sick, and I am sure he caught whatever I have. This is what we as people with normal immune systems forget about the disabled. Jude's brain doesn't know how to properly respond to being sick. He doesn't have the same ability to react by coughing, turning over, opening his mouth instinctively to breathe, etc. So Jude winds up gasping for air, retching due to drainage, and aspirating because his body is confused. So I stayed at the house this morning until the nurse got there. She is so amazing with Jude, and immediately got him sitting up, and doing CPT on his back. Jude was starting with the seal bark, so if that continues we will bypass the doctor and head to Medical City. Honestly, it seems we have little use for the pediatrician in these circumstances. We really need him for well baby checks, and eventually vaccines. Otherwise they seem to just diagnose Jude with a viral infection, send him on his way, and we know from past experiences where he ends up. So let's hope Jude gets over this fairly quickly, and doesn't need a trip to the ER.

Isn't it amazing how take or granted how our bodies work, and how we fight off infections. I never thought about my ability to cough, and the other instincts I have before having Jude. Have you?

The weekend update

So I am still getting over the worst cold ever, but luckily it seems to be getting much better. Saturday we took the kids to see Santa, and everything went fairly well. Luckily Santa seemed to be well educated on special needs children. I walked up to him with Jude in my arms, and explained he had had a stroke, and couldn't hold his head up well. Santa said he understood, and willingly took Jude in his arms. With some coaxing Emily joined in the picture, and she helped with Jude. Suddenly they snapped the picture just as Jude's head fell, and the cerebral palsy over took his tiny hands. His hands began to ball up into fists, and his head slumped forward. Mike walked over to better position Jude, and they snapped this picture.

It's a keeper, and full of memories. I tried not to feel down that Jude couldn't enjoy Santa, but you can't help feeling a little down. I figured that Jude probably enjoyed Santa in his own personal way. Santa then asked Emily wanted she wanted for Christmas, and she told him her items. After that he turned to Mike, and asked what Jude would like. The conversation went something like this.


Santa: and what would this little guy like
Mike: Robot legs (way to post Santa up with the impossible dear hubby)
Santa: I wish I could give them to all the kids that needed them
Mike: How about just a wish that all the kids in the world could be healthy
Santa: and especially this little one.


Santa gets an A+. I thought about jumping on his knee and asking for a car that will house a wheelchair and has a working horn, but I figured we had given him enough unfillable requests. So I let poor Santa be.  After the pictures Mike took Jude home, and as Emily and I were walking off I saw another couple hooking up a feeding tube to their child. I smiled, and made a point to walk to them and chat. I nodded at the bag full of formula, and mentioned how we just switched back to the Kangaroo pump. The mom seemed grateful someone related to what she was doing, and said how she loves her Entralite. We chatted for a bit about how to prime the pump, and noise reduction, and then I scooted on my way.

It was then time for Emily to go on her Angel misson, and man she had an amazing time. First she picked out her two Angels. She searched the tree, and read over all the names. She settled with a 13 year old girl, and then picked a "precious angel". The "precious angels" are for the children that are left over, and not picked off the tree. So she picked a generic 4-6 year old female to insure they would have toys too.

We went through the stores shopping for the items requested on the Angel cards, and I think Emily was very touched. She mentioned how grateful she was to everyone who donated, and how she really needs to send thank you notes. She mentioned how nice www.realitysteve.com has been to her, and how supportive he has been of her causes. Then she said she wanted to adopt ten angels next year, and give up her Christmas to make that happen. Um, not sure she will uphold that, but we will see.

Today Jude had his neurologist appointment. The doctor said overall he thinks Jude looks very well, and even said that Jude's seizures may have changed. He thinks the "spasms" we are still seeing may be simple startles that a normal child would experience but enhanced due to Jude's condition. He wants to do another overnight sleep study on Jude some time after the holidays.

So even with my illness it was a good weekend. We felt defeated Jude couldn't sit in Santa's lap like the other kids in line, but thrilled he wasn't in the hospital. I was very proud of Emily for all she did this weekend, and overall we felt very blessed.

Santa

So Wednesday night I went to bed feeling a little tired, and Thursday I woke up SICK! I just didn't feel well at all, and it got worse throughout the day. By Friday, I was down and out, and actually called into work. Luckily, I started taking an antibiotic, and today I already feel 80% better!!! WHEW. I just had no time to be sick. I hate calling into work, and I also have a Scentsy party for tomorrow, and we really need the extra money. So I am thankful today for modern medicine, smiles.

Today we are going out for a it, but I plan on being back in time to continue to rest. We are taking Jude for his first Santa experience. If you remember he has been in the hospital the last two years, so this is a special treat. Also, Emily requested donations so her charity could adopt to Angels of the angel tree this year. The girl gathered enough donations for TWO Angels! She is very excited, and we are going to adopt them today.  Throughout the year Emily and I campaign for her Emily's Smile Boxes, and then in Christmas we pick a special family. Last year she picked the family of five whose both parents had lost their job, and now this year she is picking two Angels. We are able to help them all because of the wonderful donations, and support from the people surrounding her charity. Thank you everyone!!! We have been very blessed by such generous people.

Various uses for a baby boppy

                                                      It can be ear muffs.

It can be bull horns!

                                                        It can be a cell phone

Or it can be a great way to get your special needs baby to

actually play with you, and that's priceless!

Santa Spirit

So tonight we were watching "Glee", and the whole family loved it. They say the show has "jumped the shark", but we still watch it, and we think it's a wonderful show. Tonight was the Christmas episode, and it was patterned after one of my all time favorite Christmas movies, "The Grinch!". Sue, of course was the Grinch, and she did an amazing job. At one point they were talking about "Santa Spirit". Em got a little quiet, and said meekly "I just don't feel the Santa spirit this year around here". Why..........? Why wouldn't she feel the Santa spirit? I was heart broken because I have already done so much for Christmas without her knowledge. I began wondering if it's because of the recent tragedy we watched unfold this week, or if it was something I was doing. Maybe, it's just because she is getting older, or maybe it's because Christmas isn't about what we receive. So I sat there..............and I wondered what to do. It's important to me that even though my children get older they hold the Christmas spirit in their heart. So I thought a moment about what was important about Christmas....was it the lights, presents, or what? Then I came up with a solution. I said "Friday after work let's go see Santa". Em gave me a strange "teenager" look to which I responded "Jude has never been to see Santa, he has been sick, and we need to go", she quickly understood and smiled.  I continued, " after that let's adopt an angel off the angel tree:" . She seemed to really perk up, and then she spoke "but, I thought you said we really couldn't afford it this year?" I sat there for a second. I then responded "I get paid on the 15th, and luckily I have a good job with Mr. Tim, and if we do this God will provide.....we will provide a good Christmas for a little one that wouldn't have Christmas without us adopting them." Then she started talking about how we could provide two angels, and then three angels Christmas, and then I had to pull the reigns of my little philanthropist.

So Friday, I plan on my family helping my family find a piece of the true meaning of Christmas. The older we get the more cynical we get, and the further we distant ourselves from Santa. We forget the thrill of Christmas morning, and the innocence that laces the very fabric that makes up our hearts.  We forget how very important Christmas morning is to children, not for materialistic gains, but for HOPE.  This doesn't mean they need tangible objects to hold on to that morning, because the simple thought of someone loving them will suffice. So I encourage everyone to adopt an angels, or donate in some other way this holiday season.

I sent some evites out to my family, and I encourage you to join me on Christmas eve. I plan on restoring Emily's faith......in Santa!  I will send the same evite to some friends soon that might want to participate.

A dinner, a bed, and little Emmy

Last night when I got home we all got ready to go to a dinner for our friends who lost their baby. We debated on not going because Jude was sleeping, but Emily was insistent we do. She wanted to see our friends, and honestly I did too. Once in the car I looked back at Jude who was fully awake, and making the funniest face at us while peaking out from his hoodie.

Once we got to the dinner I was just emotionally exhausted, and I am sure everyone else there was too. It took about two sips of wine and I was done. My friend actually held up pretty well at the dinner. I noticed she would tear up when she was looking at other babies, but that is a normal reaction.  I still tear up when I see toddlers running around that are Jude's age, but he is in my life. We deal with a loss of a life,or a loss of what we thought our future was going to be, or just a loss of normalcy in our own way. They say time heals all wounds, but I am not sure you ever heal from losing a child.  Even with all I have been through I still say stupid stuff in the midst of a tragedy. I told my friend that the religious sayings from people got on my nerves when we had our situation with Jude, and that if she ever wanted to just really talk to call me. What I meant was everyone telling me, "God doesn't give you more than you can handle" really irked me, not that I had lost my faith, or that nothing religious helped. Anyway, it's one of those times when you slap yourself once you left a conversation because you realize at a later point what you said wasn't correct. I guess we all search for the perfect words in a situation like this, but there are no words for a situation like this. I continue to pray everyday for her heart to find peace, and that he baby boy survives, and lives a long joyous life.


Luckily Jude has been sleeping the last few nights, so that is good. I came in to check on his last night, and he was on his back, and when I came back in he was on his side. That means Jude moved positions on his own which is truly amazing. I think he was already tiled a bit with the help of a pillow somewhere, but that is still a huge accomplishment. I always wonder what to get Jude for Christmas each year, and I wonder if he notices the gifts. This year I got him some singamajigs, which are really cute. You can see them here: http://www.thesingamajigs.com/landing.aspx . I also want to get him a music mat, and I heard that singing toothbrushes are good for special needs. Also a huge gift is his sleep safe bed, which should be arriving any day. This is what his new bed will look like

So last night night there was a little baby at the dinner, that looked just like Emily did as a baby.  When I got home I had to pull our Emily's old pictures just so I could send a scan to the baby's parents. I got an email back from them because they were amazed how much they resemble each other at that young age. I just had to share the cute picture with you, but don't tell Em, she will get me for posting it. Wasn't she such a cutie?

A funeral

I attended a graveside service for my friends baby today. The words graveside and baby shouldn't be in the same sentence, but they are. My cousin, and Mike also went to the service, and we all left shaken, and very sad. I knew Mike doesn't normally attend events like this, but these are good sweet people, and his friends, so he made it. When he got there our friend just collapsed on him wailing, thanking him for the pictures he took in the NICU before her baby passed. When Mike made his way over to me I could feel him heaving from crying. I just patted his hand, and he held me tight.

We listened to the sweet words the man running the service said, and all the mentions of how we should turn everything over to God. I wondered if they brought my friends comfort. The religious sayings didn't help me much when I learned Jude was so very sick, but everyone is different. I hope someday she does find peace. I hope and pray her other little baby in the NICU survives, and has a long healthy life. I am asking everyone to pray for this baby! His sister held on as long as she could to give him a chance at life.

I am still not mentioned names, but we don't need names to pray. I am rather emotional at work after the service, and I feel strange being here. I guess it's that old feeling of wondering how life goes on when something like this happens. I do agree with my cousin, no one should ever have to cry like my friend cried today. Life is so unfair sometimes.

My cousin went home and had a drink, I told her I had to go to work so have one for me, and I would just blog my emotions out. Rest in peace little baby girl, I know you are surrounded by people up there that love you, and your mommy will see you again someday.

A call to Texas to stand up for their children!

So it's here. I have been hearing about the fact our great state of Texas may cut important benefits to the sick, elderly, and those less fortunate. Now it seems it may be a reality, and it's looming in the future. Texas has a staggering 18 billion dollar deficit!! Texas actually has a lot less public program than some other states, yet we still over spend. Why? Who knows the answer. I have read that many believe the answer is to raise taxes, especially on the end of those that earn much higher incomes than the average person. Some people believe that expanding gambling further into the state is the answer. The Republican party has suggested that Texas opt out of the Medicaid program. The federal government covers 60% of the state's share and the remaining amount takes up 20% of the states budget. According to the news last night this is the route our Governor is talking about taking. Currently Medicaid and CHIPS are off limits from any budget cuts, but if their proposal is granted our programs will go away. They also originally suggested that maybe the state could change portions of the Medicaid program, but they did not mention that on the news last night, they simply mentioned Texas wants to "opt" out of the program all together.

I understand there are many people in our society that just live off the system, but there are many people that work hard, and truly need this care.  Jude had group health insurance through my employer, but due to the economy we lost this coverage in August. I was able to obtain an individual plan, but Jude could not qualify. Luckily Jude was approved for the Medically dependent children's program. The program provides services to support families caring for children and young adults who are medically dependent and to encourage de-institutionalization of children in nursing facilities. It is also put in place to keep families that work, still working, and therefore they will not rely on the system. The MDCP program provides Jude support with a Medicaid back up for his insurance. The Medicaid provides Jude's medical supplies, medications, and nursing. Without this Jude cannot survive, and we cannot financially survive.

The end of this program would also negatively affect the elderly. I cannot imagine the staggering number of elderly that would be without medication, support, or nursing facilities. This in turn will cause a loss of jobs in the nursing industry. I understand something needs to be done about the outstanding Texas deficit, but leaving many special needs children uninsured and without the support of the government, isn't the answer. I am asking Rick Perry to stand up for the children of his state, and stop this from happening. I am asking all mothers, fathers, and family members of children with special needs, and those that will be negatively impacted by this change to stand up! It's time to write letters to everyone that can make a different in this possible outcome. To find who represents you in the state legislature you can go here: http://www.capitol.state.tx.us/. To write the Governor you can go here: http://governor.state.tx.us/.  It's time to find out when they will try to pass this, and show up if we can. It's time to make a difference.

If it passes, Mike said we are moving out of Texas, what a thought. This is the same government that refused financial aid from the Obama administration just to prove a point. This is also the same government that has not offered the retired teachers of Texas a raise since 2001. They haven't even offered a cost of living raise. My grandmother was a teacher for more than 25 years here, yet we cannot offer her a COLA raise. She now lives in Missouri where they offer their retired teachers yearly 2% COLA raises plus more, even though they are one of the poorest states in the nation. I have always loved the great state I live in, but I am becoming a bit discouraged.

A very hard day for a friend.

I was going to blog last night, but I really couldn't find the exact words I wanted to type. I have a friend that suffered a tragedy yesterday, and my heart aches for them. I don't want to go into names, in case someone is reading this that knows them. I am sure she will come out in time, and let everyone know. A small handful of people are aware, and they will understand this blog. 

I had a family member call to let me know what happened, and I immediatley went to the hospital yesterday to see my friend. By the time I got to her room I was shaking like a leaf. I am sure it was from being back in familiar surroundings, but I was determined to pull myself together. It always seems that when people are faced with a difficult situation they are to busy making everyone else feel better that they forget to care for themselves. I wanted to make sure I was not one of those people that was overly upset, the focus needed to be on her.

I am still unsure why bad things happen to good people. My cousin so eloquently said , "I used to believe in Karma, that bad people get what they deserve. Although, what did they ever do? What did you do? I just don't know what to believe anymore". Sometimes we don't realize how ones crisis can affect another persons life. What other people learn through our hardships, and what we as individuals learn.  We all know that when a difficult situation arises we all just want to help, but we really cannot help much.  That's how I felt yesterday looking at my friend in her hospital bed... I felt helpless. Mike tried to do something for them yesterday, and without going into detail he felt helpless as well. I came home to him last night sitting in his chair in front of his computer crying so hard he was doing the rapid breathing. I just patted him on his back and walked on. Sometimes I am great in a difficult situation, and sometimes I cannot deal. I let Mike cry his emotions out, and feel for his friends. We knew without speaking that Mike could partially understand their pain, and therefore he needed to cry for them.

This same friend told me at one point, "Pregnancy is scary". Think of the profound statement that makes, and how powerful it is. Most women would never think of that comment, and I hope they never will have to. Some women know just how scary it can be, and see things, and learn medical terminology they never should. When I left out of her room yesterday I looked back to realize that I was selfish, I learned I don't own all the pain in this world. I have blogged about this person before. We are not super close, but friends. I admire her, and she is a very good person. She could use some extra prayers today. I remember being told as a child that if two or more people gather in Gods name than their prayers will be answered. Maybe we can get a whole fleet of people to pray.

I went home last night, and hugged both of my kids. Jude smiled at me really big, and then he fell fast asleep in my arms. The holidays are hard for us because of Jude's disabilities, but this year I will just be thankful he is with me.

Much love to my friend, just know I wish I could do something for you.

laughing

Mike called me earlier to let me know he had heard Jude giggling outloud in the living room with his nurse. When he went to see what was going on Jude was crawling up his wedge, or at least moving. Jude seemed to feel very accomplished, and was just giggling away. He was also very responsive to me last night when I was playing with him. I would tickle him, and he would smile, and giggle at me. I love that he is making progress! We know Jude will aways be disabled, but we are thankful he shows us emotions, and a will to learn.

Here are some pictures I took during the holiday weekend before my camera was broken.

Yes Bigs Smiles.