little update

Just a little update, as I have been MIA lately.  We have been busy, with Addison's soccer, getting ready for baby, play dates and additional bouts with pink eye.

We went to the dr., ob/gyn. last Wed.  While everything looked great, Lil' Bit, is just that....little.
Therefore the dr. wants to take some precautions and get sonograms from here on out.  He is not overly "excited" about this, but also wants to take precautions.

In questioning his motives and sonograms. he said that if the baby is still measuring small, we will look at bed "evicting"  Needless to say, we are very anxious to see how Wednesday goes.

Last Monday, Jake came to me  as I was blow drying my hair.  he stood before me, looked at me dumbfounded and asked "What'd you do to me eye?" 

I looked down at him and sure enough, his little eye was locked shut from excess eye "goop."  Luckily we had just about 2 drops left of his eye drops and started that immediately, until we could get another script called in.  Although, it was an inconvenience, mostly for my mom, as she was once again, "the chosen" one to haul him around and watch him while I worked, I am glad it was just pink eye.

Do I dare even say it.....I will probably get shot by a handful of people for boasting, but here goes....

Jake has been seizure free for 11 days now!!! (knocking on wood, fingers crossed, and whispering this news)

I don't recall a time period of 11 days seizure freedom since this damn beast has come to visit.
While we are so very grateful, we are definitely "clenching!"
This beast is a bully and very sly...you never know what his plan may be.

Please pray for Aiden, as he is still in the hospital. He was able to leave ICU last week, but things have once again made a turn for the worse, so it looks like he may have to be taken back down to ICU very soon, as he is in NCS, nonconvulsive status. (more about NCS)

Aiden's caring bridge

No matter how steep the mountain - the Lord is going to climb

it with you.


- Helen Steiner Rice

ASI Birthday party

Better late than never

Jake had his first "real " birthday party this year, courtesy of ASI gymnastics. And what fun we had!

Matt told me at least 3 times throughout the party how cool it was and how great the staff hosting the kiddos was.

I think it is safe to say all the guests had a great time.

If you are ever wondering where to have a party , I tell you ASI is the place!

They also host parents night out on Friday's. We are looking into sending the twerps to those as well.

The staff is fully aware, informed and comfortable with seizure disorders, the whole place is padded, and the kids have the best time!

Addison has already declared this is where she wants her brthday party to be next Decemeber.

Not only did the staff completely enteratin the party while providing a safe enviroment, I did not have to lift a finger! They thought of everything! I literally just showed up with the kids and the rest was already done.

Enough from me though, I think the pictures of the true glee and excitement on all the kids faces speaks more than any words.

Silly Boy!

Soaring!

Soooo very proud of his "Birthday medal!"  he still carries this piece of jewelry with him everywhere!

Look how engaged and focused they kept the kids!  I don't know if I could ever have done that!

ASI Gymnastics


We can not and could never Thank ASI and David Holley enough  for giving Jake the most AMAZING birthday party!

“At times our own light goes out and is rekindled by a spark from another person.Each of us has cause to think with deep gratitude of those who have lighted the flame within us.”

~Albert Schweitzer

Mother's Day

I have read this poem before by Erma Bombeck, but it has been awhile.  Recently ,another mom of a special needs child just reposted it and I thought what a better time to share it with you.  On this wonderful Mother's Day.

Like the orginal poster, I too feel that Erma is wrong on one aspect of the selection.  Mom's of special needs children are not Saints, at least this mommy isn't.  Being a mom is what I signed up for and I am certain each and everyone of you out there would also rise to challenge, if indeed a special challenge was given to you.

You see, when we decided to have children, we chose to make them our priorities.  That is our job as parents.  To make our  kids, Addison, Jake and lil' bit, feel safe, to be there for them in times of need, and most importantly to push aside our own selfishness to care for the little ones that can't care for themselves.

This beast that we were given, has opened our eyes to empathy, Faith, priorities, and the things that should matter most.

Although, I wish we didn't have to see our little guy suffer, I wouldn't change the past 18 months for anything.

We are blessed. we have been through the trenches and the only way out is to look for the light and fight like hell back out of this hole.

To see our twerps fight their way through lifes challenges is what makes this mommy so very proud.

The Special Mom by Erma Bombeck, 1980



Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.


"Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter, patron saint, Cecilia. Rudledge, Carrie, twins, patron saint, give her Gerard. He's used to profanity."


Finally, he passes a name to an angel and smiles, "Give her a handicapped child."


The angel is curious. "Why this one, God? She's so happy."


"Exactly," says God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."


"But has she patience?" asks the angel.


"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world, and that's not going to be easy."


"But, Lord, I don't think she even believes in you."


God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."


The angel gasps, "Selfishness? Is that a virtue?"


God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma'* for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."


"I will permit her to see clearly the things I see . . . ignorance, cruelty, prejudice . . . and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."


"And what about her patron saint?" asks the angel, pen poised midair. God smiles. "A mirror will suffice."

Thank you to our dear Mothers, Babi and Granny, on this special day, as they have given Matt and I the ability to see the rainbows after every storm.  Without them and their lessons, patience, and  understanding this roller coaster ride would cetainly be much more bumpy.

When you are a mother, you are never really alone in your thoughts. A mother always has to think twice, once for herself and once for her child. ~Sophia Loren, Women and Beauty

Marathon

We have had a very busy week. 

I had planned on taking off on Wed so Jake and I could do a doctor appointment marathon.  It would all start with the always anticipatated ob appointment.  Then we would drive to Ft. Worth for Jake's neurologist appointment.  Finally, head back home for a peditrician appointment that afternoon.

Things took a turn Tuesday when I received a call from Addison's school, informing me she had thrown up from her excessive coughing.  Since the previous Friday, when her seasonal allergies started to kick in, she had been coughing and coughing.  Her cough is aggravated by running, walking or even sleeping.  She had been up all night every night since Saturday  coughing up a lung, until she would finally gag herself.  We tried everything, to no avail.

So, luckily my mom was able to pick Addi up Tues. and give her some TLC before she brought her back up to my school, where my dept was throwing me a baby showewr.  We had a great time and were showered with much love and gifts for our likttle man.

I took Addison to school Wed. morning, and about a hour later I got another call from the school nurse, informing me they thought she had pink eye.  So our plans change a bit once again.  Instead of hauling just Jake to the appts. I now would haul both kiddos and add an appointment for Addison.

1st appointment-  My appt. was great , uneventful, but great.  Baby is head down and low.  I go back in 2 weeks for the dilation check and a sonogram.  I am counting the minutes until that one, as these braxton hicks are really picking up.  Soo exciting!

2nd appointment-  GREATNESS!!!!!  Jake's appointmet took me over the top with joy.  His blood levels came back fine , in regards to liver functioning.  BUT, his blood levels were way low.  Meaning he is/was not even anywhere near therapuetic level with his meds.  To me this is great news.  If he has such good seizure control, depending on how you look at it...compared to where we have been, or simply seizures, on such low med levels, then hopefully a little tweak will really help him!  We decided to up Jake's Felbatol, and leave everythig else the same.  It is my hope, that if this works a bit we can wean his benzo, Clobazam.  Dr. H also informed that Clobazam was not as addictive of a Benzo as many out there.  This, too, was great news. 

I left that appointment on cloud 9! well until I found the screw in my rear tire...

3rd and 4th appointment-  Jake's well baby appt. went well.  The only hitch was he did not do so well on his eye exam.  The ped recommended we go see a specialist to make sure his eye sight is ok.

She also , thought that Jake could have a possible sinus infection, but we were going to wait it out, as he is already on so many meds.

It was also confirmed that Addison has a sinus infection and pink eye. 

Thursday Addi stayed home with my mom and dad to nurse herself back to health.

Friday, FINALLY.  I take both twerps to school and ...here we go again....within 1 hour of my work day, I get a call that Jake know has suspected pink eye.  Again my mom saves the day and is able to pick hm up, until I can leave work.  Thank goodness I work with some awesome people and they were able to make this happen for me!

By the time I picked up Jake his poor, little eye was swollen shut.  Luckily, when I called the dr., he was able to simply call in some scripts for Jake, so we didn't have to go sit in a crowded waiting room again and pay some more copays.

Although, our counter currenty looks like a drug store, both twerps are feeling and looking much better!

A bee is never as busy as it seems; it's just that it can't buzz any slower.

Kin Hubbard

Creepin'

Unfortunately the past couple weeks, the nocturnal tc's have been creepin' up in numbers and intensity.

Jake has a neurologist appointment on Wednesday, so hopefully we can figure things out then.

We were asked to have Jake's blood levels checked last week.  So that is what he did first thing, bright and early on his birthday.  Luckily, the kid lOVES getting his blood drawn, so that was an excellent birthday present to him.

I am anxiously awaiting the news on those results, as I always take for granted everything will be just fine.  The blood levels check his current medicine levels and also make sure there isn't any damage being done to his liver.  The liver is what metabolizes all these drugs he is on, so it, the liver, can take a beating.

I think the plan may be to increase some meds, if indeed his med levels come back ok.

I am not quite sure how I feel about increasing meds that he has worked so hard to get rid of.

But, I certainly don't want to see all these seizures back.  The past couple days we have had 3-5 a moring and 3 during naps.  Usually, I would kind of shrug these off , but they are also coming back with increasing intensity.

However, I also don't want to see his cognition and "zip" be lost again as well as a result of more meds being on board.

Hopefully, Dr. H will have some fabulous, miraculous plan that will "CURE" everything!:-)  It doesn't hurt to be optimistic!:-)

My worst fear is that seizures beget seizures.  If these seizures are creepin' back with a vengence, are we going to see the dreadful drops again?!

Hopefully, these can all be chalked up to a simple growing spurt and a slight adjustment of meds will put us back on track!

On a side note:

Please pray for Aidan and his family.  He is a fellow Doose patient going through a very difficult time right now.

Read about Aidan here

"If God gives it to you, he will lead you through it."