A packed post of Hudson happenings and more...

So much has been going in our little Hudson world.

For starters....

last Friday I had his transition meeting with the school district. His transition from the birth to 3 program ending and starting "preschool" I put it in quotes, because for a child like Hudson putting him in school is a joke.
It would be like putting a newborn baby plop in the center of a bunch of 3 year old's and expect him to gain something...why would you? I can tell you he would only gain many visits to the E.R. with the slew of germs floating around. I  had heard and imagined I would have to fight for Hudson's rights....to get him the specific and only type of "schooling" that would be appropriate for him...home based therapy. I am happy to say that in this period of preparing for all of this to go down I never had to "fight" for what I wanted for him.
All this to say, he qualifies for everything (duh!) as I heard them tell me he is at 0-3 months in all areas.
I don't really let this bother me too much, and it wasn't shocking or a tear jerking moment for me to be among all these school therapists and hear this about Hudson. Some of them did an evaluation before our meeting, some just asked me questions over the phone, some was my first meet and greet.
They all know he is riddled with seizures and meds...they are familiar with the mask her wears...I also hold on to knowing this mask could be lifted, development could kick in...today, not so much.

So...on comes a new team....we get...
*speech
*ot
*pt
*vision
*preschool teacher

(Hudson also qualified for ESY...extended school year, for summer months)

they will piggy back, all coming once a week for about an hour, on M, T, Fri.
Hudson will also keep his current O.T. from the Elks on Wed. and clinic P.T. on Mon.

A fact in all of this from the school...

out of 1,200 special ed students, Hudson is the only one receiving home based therapy! Aren't we special?
Again...glad I didn't have to fight for this, glad they understand the need...
I would hope they would though....Hudson's neuro did write a letter stating it could be life threatening for Hudson to be in a school setting....don't think they get many of those letters.

So lots of change headed our way for our little guy...

and I am bracing myself and ready...praying I like all these new faces that will be walking through our doors!

Today we had a appointment with Dr. Carter...pulmonary. Hudson was actually under his care during our last admit in March, so it was good to see him today. First thing he said is that Hudson looks really good...so much better! He wants Hudson off the augmentin, which will happen tomorrow, and continue the nasal mist antibiotic at least through the summer. He wants to try the med again for the secretions now that the infection is gone. Hudson's secretions have been bad...just lots of salivary drooling when upright. He never had this problem before, but, like Dr. Carter said, so much play into the changes we see in Hudson. Changes in seizures, increase and various med changes, the disease itself and the effects on his muscles...

I really like Dr. Carter. I told him about our family situation, and wanting to take Hudson to Nevada for 4-6 weeks and asked him his opinion. His thoughts were if Hudson appears as he does today, he didn't see a problem with him going. He said he would be readily available by phone as should Dr. Saneto, if anything arises, and we could always fly him home...worst case scenario, if need be. He gave me script for Augmentin, the pill form, which has a 1 year shelf life. He told me to fill it, and take it to Vegas with me in case Hudson comes down with anything, or if the color of his mucous changes, etc. He felt that would be a good measure of comfort and defense knowing I have that to give him, not having to seek a dr. out....I was very happy he did this for me. It does make me feel better, and makes me think I may actually be able to take Hudson and the kids in July....I actually felt smile-e after the appointment!

I mentioned last week a certain someone's birthday was coming up...yup, Hudson will be 3 Friday.
I don't want to get into this too much, other than to say his birthday's have been very hard on me. I usually put the happy, celebratory face on, while I am cringing and crying inside, wishing all would leave the "party" so I can just sit and have my cry fest. This year I am really trying to focus on the fact that there really is much to celebrate. That Hudson, in spite of swine flu, and a whole bunch of other infections and cold, and 3 very recent E.R.hospital stays...he is here, and he fights like no kid I have ever seen fight...and he is such an amazing kid with super-duper strength that comes only from God...my focus is not about him turning 3, my focus will be that I and those who are blessed to know him, can celebrate all his three years has given and has taught so many. What a gift his 3 years has been...each day is such a gift, I don't want to waste my time being sad over what is not his, I will choose to focus on all that he gives, all that pours out from such a tiny body.

STANDER UPDATE....
I have been doing my homework, getting Hudson up and guess what????
Tonight NO CRYING!!!! He was up for 5 min. without tears or seizures! Pretty cool. He did start to fuss a little and I am pretty sure whaling was next but I got him out before it could happen.
One crazy thing....5 minutes in the stander and I take him out and both his legs and feet quiver....
muscle fatigue in 5 minutes!

Another Hudson happening....

This may sound horrible to some, but for me I have to share what gift my mom is giving Hudson for his birthday, because I find a huge amount of relief in it.

My mom asked if she could do Hudson's birthday party as her gift for him. I know as his mom, I should want to plan and throw it just like I do for my other 2, year after year...and maybe I feel a bit guilty because I am not planning it...BUT...when she offered, I felt a huge sense of relief. I have so much on my plate, I just didn't know if I had it in me to plan a party...and yet Hudson totally deserves the grandest party ever...I think it is an amazing and wonderful gift for Hudson and for me! :)
I have no clue what she is making or doing, but I know it will be perfect...mainly family, some friends, and possibly 2 very special current therapists that hold dear to our hearts...it will be a special day indeed!

That's the latest in Hudson's world.

One sorta funny from the world of Hailey....

she made this at church...a poster type thing on MOM...where she filled in the blanks (I will type as she spelled)...

My Mom is....loveing

My Mom loves...me

My mom's favorite...kids

My mom needs...cloth

My mom wants...no more segrs

My mom Knows...I lick candy

A Promise for my mom...I love her

Next I have one more thing to share...
it's a bit sad ( I cried, no surprise I know!) but really good and comforting to hear.
I am talking about the mother's day sermon I heard yesterday.
I highly, highly, highly recommend you taking the time to watch if you have lost a child, have a sick child, or know someone in your life who is going through pain and suffering today.

For me...
I know God wanted me to hear this sermon. I had every reason not to go to church Sunday. Hunter had a friend spend the night, and mainly I had no one to stay home with Hudson, and I have not gone to church bringing Hudson in months(since Sept), because of germs...but I packed him up, and the boys and we went to church. I sat far away from people and faced Hudson toward me and the wall with the canopy enclosing him...he was a quiet perfect angel, with the exception of one cry-out tonic seizure toward the end.
I felt moved by what I heard and I knew the holy spirit nudged me to go yesterday.

not quite the tradition...

It's the first time since I have become a mother, that Paul is not here.
In short, we have a simple tradition....

I SLEEP IN!!!

followed by breakfast in bed served by hubby and 21/2 little monkey's...
followed by cards and little gifts...
followed by hugs and kisses and ...

relishing the fact that I get a "day off!"

No...
it's not quite the traditional mother's day in my home this year...

I was woken at 6:20 a.m. by two 8 year old boys (Hunter had his best friend over night)
playing Rock Band on the Will....
followed by our 13 year old black lab barking to let me know she needs to go potty...
she rarely does this, but at 13 (91 people years) if she is telling me she needs out...I haul myself downstairs to let her out.

(I have to add...my little angel is the only one who has slept peacefully, and never woke me up...love that little guy!)

Back upstairs I go...shutting the boys doors, shutting my door, hoping to catch some zzzzz's when the boys come in my room asking me for a Visa so they can buy something on the Wii online...
NO WAY....clearly, they don't have the understanding of credit...cuz then they asked me for the "numbers" instead of the card...like there is a difference! Oy Vay!!!!!

By 8 a.m. I am downstairs making my own coffee...Paul and I were going to drink coffee together via skype but he couldn't get online, so I am drinking my coffee alone...after throwing the boys a bowl of cereal.

Paul was a little disappointed....I think he envisioned dictating how to make "breakfast in bed" to Hunter and Hailey via skype and  part of our tradition would be upheld. When he found out Hailey wasn't here, he couldn't get online, and my morning wasn't exactly the slumbering type...he sounded sad...for me.

I am really o.k.

Just another Sunday...being a mom...ya know?

All I want to do is go to church this morning. Get some good food for my soul.

We had a fun night at my friends for dinner...
she set a beautiful Mother's day table and we had dinner and talked.
My mom came too, so it was fun...we gals can sit at a table and talk and talk...that is what we do best! :)
She made me a beautiful prayer journal...I have never had one, but I am anxious to use one...especially for my online families and their prayer requests...sometimes it is easy to forget specific requests, names, etc.
A special gift...thanks Val.

So for this mom...

Church it is...
then I think I will go "hang" with my mom and my guess...

we will get a good movie and crawl into bed and let the kids fend for themselves! (Fred is over so they won't really be on their own!)

To all you super moms out there...

Have a beautiful day with your families....

I love, respect, and admire each and every one of you!

LOVE YOU MOM!

The reality of not sitting...crawling...walking

It hit me hard this week.
I never really thought about the mechanics of our bodies until Hudson came along...
how the road of physical development for a child happens so perfectly,
in such great timing...

I have been hearing lately of Hudson's hip being tight...primarily his right.
He favors his right side over his left.
His O.T. is the one who I have been hearing this alot from lately.

I have also noticed his big toe doing weird things.
It is as if he is curling it up and it is bent.

So of course, I ask his P.T. about this and his hip on Monday's visit.

He agrees, the hip feels a little tight. He explains how as babies develop and and start pulling up and walking how the hip socket goes from being more flat as a new born to cupping the hip bone as it forms into the socket.
All makes sense.
This is why Hudson has a stander. This will help get that process going in spite of him not doing it on his own.
There is really no down side of putting Hudson in the stander.
It is good for his....
bones, digestive system, spine, secretions, his body awareness in space.
It will help with that big toe issue.
He is over using the muscle on top of his toe and not using the muscle on the bottom side of toe.
Standing and putting pressure on the foot, forces him to use those muscles. The toe flattens.

If Hudson's posture isn't straight as possible...in his chairs, stander, car seat, etc. it can cause his spine to curve, which can cause scoliosis. Scoliosis, if severe enough, can cause organs in the body to not have enough room, causing other health issues.
It is the snowball effect....and it scares me.

If the ball of the hip doesn't fit into the socket then their will be hip displacement.
If the muscles of the foot aren't developed there will be foot deformities.
If the spine and posture aren't aligned, there will be scoliosis.

All of these things would concretely prevent him from ever being able to stand one day or walk.

So many things I took for granted, never even thought about as my other 2 kids were babies.
I never realized Hudson's illness could create more than the laundry list of issues that we deal with already.
The things above are really big issues...ones I don't want Hudson to have to deal with on top of everything else he goes through.

The problem is.....

do you remember the video I shared when we put Hudson in his stander?
That is a classic example of how he gets every time we attempt it.
He fights, and expends so much energy, because he is so mad, that he usually ends up having a ugly tonic seizure. Then sleeps.
If Hudson had his way...he would never have to "work" on sitting, standing, playing....he would just snuggle and be held all day...that is what makes him happy.
I haven't pushed the stander because of all the colds and hospitalizations he has endured the past few months...I just don't want to put him through any more than he already has to endure! I don't want to fatigue him, and throw him into another seizure for the day!
I realize....
I must...because the above mentioned is equally bad, and I don't want him to endure his load today plus that.
I realize part of his intolerance to the stander is due to the fact that I am thin-skinned, and hate to hear him cry and hate to be the one to cause him more angst. I too would rather cuddle him and hear him purr like a kitty. It makes us both happy....today.

But we need to think about tomorrow.

and so....
I have vowed I will put him in the stander once every day for a month.
Right now he only last about 3 minutes, and that is with screaming....
because the screaming and fighting starts the minute I put the orthodics on...
he knows whats coming...
but I want to see if in a months time if that 3 minutes can turn into 6 minutes...
maybe his tolerance will grow if it is a part of the daily routine.

I don't want to be the cause of him developing any of the mentioned deformities....

it's that thing called guilt....

cuz I also don't want to be the cause of fatigue and seizures either.

Such a fine line we teeter-totter on....

timing is everything...

seems that was the motto to our weekend.

Timing was amazing, like I said, for him getting out here on Thursday.
Since his plane got in at 6, we went to my moms for a wonderful dinner.
Hailey got much needed daddy time on Friday. I had to work from 9-12, so the 2 smallest H's stayed home with dad. Hunter was a bit jealous, but such is life when you are in 2nd grade!

Timing couldn't be worse when I felt a cold coming on Thursday night. Friday felt it a bit more, by Saturday my head felt like a bowling ball. Stuffy nose, little cough, eyes burn. Blah!
Tried to be "perky" so Paul wouldn't know, but you can clearly hear it in my voice.
I cooked for him, and made everything I promised.
He went back loaded with roast, carrots, chicken enchilda's and a breakfast casserole I made this morning.
Paul doesn't travel with clothes, just a backpack full of homemade food! Hope it lasts a while.

So I have a cold, plus that cramp-y feeling, and simply just not feeling good...at all!
Paul's head was heavy and full too...not because of illness, but because work-happenings.
I hate that work steals my husband and my kids father from us...but it does.
He is such a hard worker and a wonderful provider. He is very dedicated, which is probably why he is successful. He has a hard time separating work and personal life and I think it is worse now that most of his time is focused on work. So because some things were weighing heavy with him on the work side of things, it made him a bit less "present." He was aware of this...we talked about it...hopefully next time this won't happen.

I did get a small "honey-do" list checked off....
or I should say hubby got it checked off...

plugged bathtub
shower door not closing
microwave light/ night light replaced
video cam for the computer installed

Nevertheless, always great to have our family weekends, no matter which way they come. It's not always gonna be picture perfect, I am one that has a pretty good grip on reality...perfection is not one of my expectations...life can get in the way. Did make us both realize how much we enjoyed our "alone" time together, which we obviously didn't really have, but as much as we love the kids and need family time, we also need alone time. Hopefully this summer we can makeup for both of those things.

We had to head out earlier that expected today...flights didn't look so good this morning.
It was a quiet ride...sadness sets in...I hate goodbye's. Paul was pretty teared/choked up once we got to the airport. I t was a quick goodbye, he was late, and I don't think he wanted the kids to realize he was choking tears back. They were oblivious, as they played their DS's.

Before getting on my blog, we did skype for the first time. The kids thought it was super cool to see Daddy and I think it will help a lot. Again Paul and I were the ones crying as we said  goodbye...kids were fine!
As got ready to X each other off the computer screen, Paul said he thought that as time went on things would get easier, instead they are getting harder....I clicked him off and Hunter  said bewildered, "are you crying?"
and I said yeah...and then I got two of the biggest squeezes around my neck. All I could think, was there is nobody to give Paul a hug right now...and it made my heart hurt a little more. I am certainly the lucky one. I may be busy, and tired, and cranky (some of the time) trying to keep up with all the demands by myself BUT at the end of the day I have 3 little monkey's that in each of their own quirky ways...makes the craziness and sadness of our lives alot better. They make me forget, they help mend, they keep me busy, they make me laugh, and they fill my life.

So this cold, and mother natures call, and Paul's work woes couldn't have come at a worse time...
BUT we continue to realize the value of our family, what we have, and how blessed we are in spite of it all.


**please say a little prayer that Hudson doesn't catch this cold...hoping I somehow caught it from him**