Wednesday, October 24, 2012

Pure and perfect

Below is one of the best articles I have seen written by a special needs mother. It does an amazing job of conveying the fact that as desperately lost in grief you are at the initial diagnosis of you child that life finds a way of becoming very special. I highly encourage people to read it especially if you have a newly diagnosed special needs child.

I relate with this mom. The strange thing is Mike's dad was just at my office and said "Does Jude respond to anyone else like you? He just lights up when you get home from work like nothing I have seen".

Ps. Grab a tissue.

Tuesday, October 23, 2012

Update from this morning.

Well it's another GLORIOUS morning (what show is that from?). Mike called my name this morning about 6:15am to tell me Jude's med port had come open and had leaked his food all over his bed. Of course Mike thought I didn't close it the night before, but I know I did. I watched the food go in because I was checking to make sure the line was open. If I had left the port open his red medication would have been everywhere and it wasn't. I think he coughed so hard throughout the night the pressure opened the port. However, now that we are a few years into caring for a special needs child I can tell you that you do and WILL make mistakes. I have gotten to the point now that if I make a mistake I understand there isn't anything I can do about it after the fact except learn not to do it again.

So I stripped Jude's sheets, changed his clothes, and put him into our bed. I then hooked up his feed again with about 6 ounces so he would get some nutrition. He finally fell back to sleep, but then woke up and threw up twice.

Again, it was another glorious morning, lol! However I did enjoy his sweet smiles with me this morning

Monday, October 22, 2012

Weekend update

Our Anniversary was nice. Jude wasn't feeling that well when I left, but Gena assured me she would take care of him. Sometimes it's really really difficult that we don't have trained people that feel comfortable watching Jude so having Gena around has been great. Don't get me wrong..........our nurses while we work and for some time on the weekend are amazing.

The Emily's Smile Box party was a success too. We made 350 boxes and we are currently setting up the Christmas party. It will not be mixed with Emily's birthday so I hope it will be a little less chaotic.

Jude's had a check up with his neurologist. He seemed very pleased at Jude's progress although he did increase his seizure medication a bit to better control the new seizures that have reared there head. However he seemed very excited at the fact Jude's school is talking about electronic devices for Jude. They want to test putting switches on his head to see if Jude can answer yes, no, etc to certain questions...........that excites me!

Well it's short but wanted to update. It does seem Jude is feeling better than Friday. I am hoping he stays that way.

Also, Emily's Miss DFW Teen USA page is up............stop by and like her :)!/pages/Miss-DFW-Teen-USA-2013/416654021734127  she will be competing at the end of November for the title of Miss Texas Teen USA. You can follow her journey there as she gets ready and competes. We are going hoping she has a great time and learns the ropes. I know she will make new friends and have a lot of fun.

Thursday, October 18, 2012

5th anniversary and life.

Tomorrow is my 5th wedding anniversary. I have taken off work so I can spend the day with Mike. Well, part of the day. We also fit in a neurologist appointment for Jude in the morning. It wasn't in the original plan, but you do what you need to for your kids. I am very blessed to have such a great husband. He is my polar opposite, but we fit together great. He is funny, witty, loud, caring, passionate, sweet, a stinker, an amazing dad, great looking, and my match. I love him very much.

Lately I have noticed such serious and stern attitudes on facebook. I have also noticed people very set in their ways. I thought I would share something with you. When I got pregnant with Jude I was just like every other new expectant mom out there. I took my pre-natal vitamins, I planned how the birth would be, how the room would look, how I would parent, and everything else that goes into having a baby.

What I planned: I planned on a non stressful birth without an epidural. I planned to not be induced since statistically it causes more c sections.
What happened: My epidural was placed even before my labor was even started at 38 weeks. They placed the epidural because my platelets had plummeted and if an emergency should arise this would keep me from being sedated. I was induced at 38 weeks due to Jude's issues.
What I realized: as much as we all want the perfect birth it doesn't always happen and you have to do what's best for you and the child.

What I planned: To breastfeed
What happened: a struggling baby who we didn't know was aspirating on food. We tried as long as we could and finally this turned into placing a g button with a 24 hour crash course in how to use a feeding pump.
What I realized: when it gets right down to the nity gritty food is food no matter how it gets in there.

What I planned: A beautiful bedroom decorated in cute farm animals.
What happened: converting my dining room downstairs into a room for Jude so he would be closer to us in the event of an emergency
What I realized: That Jude loves his room. He smiles every time we take him in there so everything happens for a reason.......and it's just materials.

What I planned: To potty train by age three
What happened: The realization that he will always be in diapers.......this also eliminated cloth diapering.
What I realized: That diapering a 4 year old with adult small diapers is EXPENSIVE and thank goodness for insurance!

What I planned: To make my baby food using the food processor we purchased
What happened: See reference to crash course in using a feeding pump

What I planned: To stay away from antibiotics and other medications because the world pushes them to much.
What happened: a real quick lesson that a little tylenol and motrin sure isn't going to hurt a baby when you give them felbatol, depakene, and other heavy anti seizure medications.
What I realized:  That my worrying with Emily over giving her medications as a baby was not warranted. 

What I planned: To read to Jude to help him do better in school
What happened: Realizing that Jude may not read, but he loves to hear us talk to him
What I realized: Jude knows more than we think because he recognizes stories.

What I planned: To go to the circus, disney world, to see Santa, and do all the great things kids love
What happened: attempted trips brought forth the knowledge that a child with a sensory issue is overwhelmed by the noise that goes along with these places.
What I realized: That staying home with Jude is a really great thing.

What I planned: To let fevers take their course and not to rush off to a doctor because nature knows what it's doing
What happened: a fever can signify a very serious issue in Jude
What I realized: You always have to rush off

What I planned: Life
What happened: Life
What I realized: don't sweat the small stuff, fate chooses different paths than you do sometimes, don't judge others until you have walked in their shoes, be open minded, always be kind because life can change in a second, and embrace the change.

Monday, October 15, 2012

What it's like to be Jude's parents.

Mike was rather emotional yesterday. I attribute it to the fact he has been sick, but sometimes he is just an emotional guy. He got teary when he saw a little boy like Jude walking with the help of his mom yesterday. He then got teary when reading a summative written by a mother in a situation similar to ours. Last night while laying in bed he said

Mike: Did you read this thing Stacey posted about "Neuro mom"
Me: I started too, but I am so worn out from being sick and Emily's party I just couldn't handle it emotionally.
Mike: It's really good
Me: I will read it tomorrow so I can let it sink in

He then read me a bit, but I think he got that I was just physically and emotionally exhausted from putting on Emily's Smile Box event. So he posted it on his facebook and today I read it. So today I sat down and read it ........... at work..............big mistake. So I will for go the blog about Emily's Party and post it tomorrow so you can let this soak in like I did. I think it is the very best writing in regards to Jude's condition that I have read so far. It really sums it up from beginning to today.

I am a Neuro Mom

I just wanted a healthy baby

With no tubes
And no surgeries
And no daily meds
I wanted to take my baby home
And go around showing her off like normal new parents do
I got a very quiet baby, who never made a fuss but didn't meet the milestones, and screamed non-stop in car rides meant to calm

Then there we were again, 6 months later. With seizures.
Stuck in a hospital room
Most, almost all really, were afraid to visit...afraid of the unknown, afraid of the sadness of a sick baby
It was sad, and disappointing.

And then in parade the other moms
Strangers with babies like mine
Even babies who have finished their battle and are in Heaven
You can see it in their eyes -
They know

And they bring chocolate
And coffee
And Tears and Laughter
But mainly they bring empathy

And so they hold my hand and lift me up
When I cannot stand
And together we walk this journey

I am a Neuro mom
I know things one just should not know
I know what it's like to hear the words status, and slowing, and spikes
and regression, global delay, and hyppsarrythmia.
I know that constipation, fever, loud noises and colds can bring on seizure.
I know that one seizure is one too many
I know how to put a mic-key back in if it comes out
I know the cry of another Mom losing her child
I know what a running group of doctors means
I know what it's like to watch a machine
that has your baby's future written all over it
I know the exhaustion of pushing the button every 2 seconds during a VEEG
I know the "wanting" to watch the EEG machine, even when the techs turn it away
I know what it's like to wake in panic at beeping alarms
I know what it's like to have nurses and doctors know how you take your coffee
I know the guilt of wondering if you are neglecting your other children while sitting in the hospital while you watch this one.

But I also know what it's like
to leap with joy at my baby drinking half a teaspoon
to high five eating a bite of a sandwich
to defy the odds
to lift up another neuro mom in tears
to be surrounded by Warrior Moms, and FFL
to have made friends for life because of my child's condtions
to release a balloon in memory of an Angel
to survive a war
to be in the presence of a Miracle

So today, and everyday, I am a Neuro Mom. I am a warrior mom. I'm so proud to be .
And I wouldn't want to be anything else.

(Borrowed from a friend) ♥

Monday, October 8, 2012

Dreams off track and what to do

Wow, I have been pretty overwhelmed with decision lately and to be honest.........I have completed ONE of them! We have to convert a bathroom for Jude..........and we are unsure how to. Our half bath backs up to our main bath so there is no way to convert the half bath without tearing into the master bath....confused yet? Our master bath cannot be converted due to the tub/shower issue. Which means we would have to convert our master closet into the handicap shower..........this means we lose resale value (big time). I did have one idea. We could convert the half bath and let it take over part of the master bathroom. This would leave the rest of the prior master bath as extra closet space. We could then push out into the backyard and add on a master bath. However, I have NO idea the expense or if I could even refinance with this option. It would add lots of value, but again it may come down to money. Issue is Jude is now over half my height. For moms of four year olds let's put this in 4 year old cute disabled little boy is as tall as my friends 9 year old son. eeek! lol.
The other thought has been to move.........but I love my house. I realize it's just a material possession, but I love it. If we move Mike wants land. So the thought was to buy something older so it would be easier to convert a room. So we are really up in the air on this subject and I am at a loss.

I am also struggling with knowing my boss will eventually retire from his position and wondering what avenues I should take in life. I like my job. I have the majority of my family and friends insured at our agency. I just hope I can be here for a long while. Other major decision is my husband and I would both like another child....not to replace Jude because he is irreplaceable, but it was always the plan. We have just been seriously side tracked and derailed from our plan. I have no idea if we will pursue this dream either, but a lot if up in the air right now.

Jude is well. He is smiling and happy. His G button site is a bit pink but the antibiotic ointment is helping.

Oh and now that it is getting colder be be kitty has been popping at the door again. I let him in and he wants back out. I put him out and he wants back in. It's a battle!

Wednesday, October 3, 2012

An anti bullying message.

I am sure you have seen this, but I had to share.

Good for her! Obesity may be a problem in America, but so is bullying! There are many medical reasons that women and men can be over weight. He doesn't know if she has one of this issues .......... he doesn't know her at all. It's time we stop looking at people and see color, or weight, or a disability. We need to look at people for what they are.........people. Everyone deserves to be treated equally and without judgement. She acknowledges she has a weight problem and she understands it. I personally look at her and admire her beautiful hair and what high cheek bones she has. Maybe every one's challenge today is to be kind to someone. Notice something beautiful about everyone you come in contact with today and let them know. It may very well just make their day!

When I was in middle school I was going through a very rough time at home. I had very short hair, glasses, a retainer, etc. I was bullied by several classmates and named "Turtle". As I got older and became more self assure I realized I had no control over that situation. No one knew what was going on during my home life, but they should have known not to treat someone so poorly. So I decided I would always proudly accept the Turtle moniker. I also decided I would raise my children to stand up for those being mistreated vs being one of the children that did the bullying. I am proud to say that Emily is very outspoken when she sees someone being teased (especially if they are disabled). My husband is the same way (and he wasn't always like that). So I hope you will join us and let's stomp out bullying!