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Friday, January 21, 2011

Just for fun

Ok. Let's start with Alexander's outfit last weekend.  We had a Steelers vs Raven's party (everyone was Steeler's fans except poor Raymond). I truly believe that our win was due to the good luck Alexander brought!

And then we had a playdate with some friends last night.  My kids love "little Cabeb"

Caleb dressed as Elmo - with his "hood up"

"Are you talking to me, Darling?" I'm way too cool...

Then we created a Rock Band!

Andrew on the Keyboard

Addison on the Guitar
She is one HOT mess!

Caleb on the Drums

Thursday, January 20, 2011

Lamentations on a long day of Doctor Visits

To be alone in a crowded room is a terrible feeling.  To be the person with no friends...who looks around, wondering if anyone out there is interested in talking to you.  Do you have anything to contribute to a conversation? Will these people like you? I still find it daunting to go to an event totally alone.  And yet - here we are traveling this path - alone in a crowded room. I know we have support - and I'm thankful for it - but all children with WHS are so unique - what works for 1 child may not work for another. I ask question after question to other moms and to other doctors and specialists..... and still - the responsibility lies on me. So let's re-hash the events of yesterday.
1. Our first appointment was with our Geneticist.  Let me first say - that I have always had the most respect for him.  In an earlier post - I even refer to how he turned Raymond and I around in the early days of Alexander's diagnosis.  But - I'm guessing everyone is allowed to have an "off" day.  I'm praying that he was having an off day.  Our relationship at this point is to bounce ideas off each other.  I told him about Alexander's eating troubles. His response - "just use the pump." I explained all the work we did to get Alexander off the pump. "Just use it." I told him I thought he was getting teeth... he told me "I think that teeth/not eating thing is a bunch of Bologna." hmmm??? Even his assistant spoke up several times - which she never does. I even cried at the appointment. I was hoping for some suggestions to get us back on track orally.  I was hoping for reassurance that we are doing what is best for him.  He was also used the phrase "Comme ci, comme ça" when referring to Alexander's physical and occupational therapy.  He asked me what I was so afraid of.... my response, "screwing him up." and tears.  I was being brutally honest.  And brutal honesty sometimes accompanies tears.  We left Dr. Ladda's office more than a bit shaken by the entire experience.  He is one of the doctor opinions I trust the most - but to just be so flip about allowing Alexander to "exist" without trying to put to use the therapeutic options we have made me questions his advise. I don't want to question another doctor...
(By the way - a side note - Alexander has PT and OT 2 times a week and his nurse works with him regularly during play - he is not over therapied.)

2. Next appointment. Nutritionist.  This one already had me scared to death because every time we see a new person involved in Alexander's care it involves very extensive conversations about his condition.  For example - she comes armed with growth charts. Regular growth charts. Which Alexander will probably never be on.  I ask her - do you have any experience with kids with Wolf Hirschhorn Syndrome? She tells me no, but moves expertly into pointing out her little graphs and charts about Alexander's size on the growth charts.  All the while I continue to tell her - I'm not going to do anything with those growth charts.  I'm not going to talk to you about caloric needs until you start to listen to me about these growth charts!  Finally - (after she gives me the regular charts- which I threw in the trash when I got home) we begin to talk about Alexander's caloric needs.  It turns out - we are pretty close to hitting the mark! Well... actually - we are hitting the mark, but not quite by her "catch up" standards. ggrrrrr~~ don't you listen to me, Lady? Anyway - she had some very nice suggestions and gave me the link to a great website - The Calorie King.  Try it - you can even put in 1oz of mac n cheese and find out the calories! YAY!
3. Finally - Neurologist.  Dr. Barron. With Alexander's break through seizures, we had an EEG run the week before and he was going to tell us the results.  As for now, we are staying strong on Keppra and probably going to do a 24 hour EEG to see if he is having mini-seizures during the day.  We will schedule this later this month. He was super positive and finally concerned about Alexander's loss of oral eating skills.  He was the one who discovered Alexander is teething... 5 teeth.  3 molars and 2 incisors. No wonder my baby's mouth is sore! I'm just worried because ... how long until these teeth break through? Will he become dependant on the the tube before his mouth feels better?
An exhausting day. ... A day in the life of WHS dr visits.  Alone in a crowded room.

Thursday, January 13, 2011

How can we be so blessed?

Sometimes my life stresses me out. I'm not going to lie. 2 year old twins and a special needs son can make things interesting, but you know what makes my world Amazing?  The people who love us.  How can so many people care about us?  When we pregnant with the twins, we did not buy a single car seat (8 were given to us!), we didn't buy the jumper, exersaucer, highchairs,.... I mean - people showed up in force to help us.  With Alexander.... it is even more amazing than I would have ever dreamed.  The thoughtful things people do for us.... it is unbelievable.  I'm not talking about monetary things.... I'm talking about the friend who offered to cover my study hall so I could talk to a physical therapist about Alexander.  I'm talking about my friend who is a Physical therapist and took an evening away from his family to show me how to kenesiotape.  I'm talking about my friend from college whom I haven't spoken to in a decade ... who calls to see if she can help me because she is a nutritionist.  I'm talking about my friends from work who helped buy Alexander the Wingbo.  I'm talking about my cousins and uncles and aunts who made sure we went to the conference in Salt Lake City this summer.  I'm talking about our church family who prays for us and with us.  I'm talking about the secretaries who offer to baby sit for me on a regular basis.....
How did we get so lucky? How can I do this for other people?  Some mornings are tiring. Some days are frustrating. But.... my days are filled with love. Love between myself and my husband and my children, but also love between those people who take 5 minutes to let me know they are still here for us.  I am here.  If you are reading this.... I am here. Call on me. Call and I will come. 
I am continually reminded of this bible passage: 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.'

People continue to do for us... in what seems to be our lowest time.  But this time is a blessed time. Our friends surround us with support. Our family covers us with love. Life is good.  Life is great.

Ok. Tell me this is not appropriate.... I'm ok with it.

Dear Pappy,
Yes... Pappy.  I remember when you said you were frustrated about how much attention was paid to the Vietnam war.  That you didn't want to diminish the enormity of the conflict in Vietnam, but it seemed people had almost forgotten about the war you fought in... the Korean conflict.  The war (I know... it is not really a war) your friends were injured or killed in.  I remember that you just wished more attention was paid to the war that was so important to you.  I'm about the post something terribly similar. (Mom always said we were the same person just generations apart).  Autism gets a lot of attention. Ok. I said it. I'm just a little frustrated.  As I navigate the fine motor skills, gross motor skills, every skills out there - to try to find some things for Alexander... there is so much geared toward Autism.  It is the Vietnam / Korea problem.  Autism is so prevalent in our society; it affects so many people ... there are tons of resources for it. I don't mean to diminish the issues that people who live with or have children who live with Autism must face on a daily basis.... but I'm struggling to find things that will help my non- Autistic baby.  Ok. Done.There's my soapbox for the day. You can all hate me now if you like. Sorry.

**Just so everyone knows for sure where I stand.... There are many resources for children with disabilities that are not part of the Autistic spectrum.  They are often interspersed with many many many resources for children who are on the Autistic spectrum.  All people who have some disability need to have places to find information.  All people need support.  Please don't interpret this post as anti- Autism. IT IS NOT. It is just pro other resources for lesser known disabilities.

Please don't hate me!

ps.... Miss you tons ... Pappy

Tuesday, January 11, 2011

Decisions ... Decisions

One of the hardest things about being a parent of a child who isn't ..... shoot.. who has special needs is the decision making process.  You see - with a "normal" child, you make a misstep and you end up with a kid who doesn't sleep through the night until they are 3 or you end up with a kid who has bad manners, etc.  In the grand scheme of things - not really that big of a deal. With Alexander - decisions take on a life of their own. Now... I know many of the people reading this have children with WHS also - so don't be too upset at me for sharing these possible outcomes.  Really, my decisions now all come down to Alexander's nutritional needs. Ok... here are my dilemmas
We already have a feeding tube.  It was not our informed decision - it was made at the time of the diagnosis because we were told Alexander would never eat.  So.... do we use it?

**The benefits of using it are - we can definitely give Alexander more food through the tube than we can orally. It is definitely easier to tube a bottle than it is to coax him to eat 2-3 oz... sometimes only 1 oz.  He might gain weight faster if we use the tube.  He might develop faster if we use the tube.  He might not be getting enough nutrition without the tube.  He might begin to walk if he had more muscle strength and brain development from more food.

** The downfalls of using the tube - he might need the tube forever.  He might realize how easy it is to get calories without having to work for it.  He might not gain any more weight any faster.  We will probably loose all the oral skills we spent the entire summer working on. Oral skills are the building blocks of talking.  What if he never talks because we chose to give up orally? What if we deprive him of the joy of eating because we give up orally?  What if we have to carry pureed food, a pump, etc... for the rest of his life because we allowed him to become attached to the pump?

**The benefits of eating orally - he can eat 3 oz at one time through the bottle.  He knows and cries for hunger.  He eats food - stage 2/3 consistency.  In fact, if I give him pudding - he will only eat it if I make it thicker with rice.  He has eaten small small bites of bread (the size of a rice crispy treat) ... but still - eaten them.  He will eat  puffs/ yogurt puffs, etc.  He is progressing with his skills.  He has rolled from front to back, smiles, coos, moves all around, is gaining neck control and trunk control like you wouldn't believe. So.... maybe he is getting the nutrition he needs.  Loads of other WHS moms don't have a tube and would probably not give Alexander one if he was displaying all these things. He has sat unassisted for 2 seconds while during OT.  I did not see this - but heard about it.  Is it possible for an 8lb baby to have enough muscle strength to sit unassisted?  Plus... seriously - how many 7lb 9oz babies do you know that drink more than 2-3 oz at a time? How big can his stomach be?

** Downfalls of ignoring the tube - he already has it. Are we slowing his process by not using it?  I know of 2 moms who started feeding their kid with the tube regularly and their kids are now doing all sorts of new stuff (including walking) and gaining weight like a normal kid.  Also, as we progress into baby foods - it has less calories than milk.  So - when I give him a jar of baby food - it might only have the calories of 2 oz of milk (and that is a pretty high calorie jar)

But how do I take the risk? It is all or nothing.... when I tube Alexander, he doesn't experience hunger.  He doesn't cry for the next bottle or food.  Then I have to tube him again. I tubed him last night - just the rest of his bottle so he would get enough calories and when I called home at 9:15 - he still was not awake and hungry. *sigh* 

I feel like I am choosing between a wheel chair and a feeding pump.  I know - it is not that black and white.  That lots of kids without feeding pumps end up walking eventually - but I also know a lot of kids who I can't help wonder if they would have developed faster / more if they were getting better nutrition.  I also know kids who have been on a feeding pump and learned to eat orally later in life.  Every time I speak to someone who uses the tube - it seems like I am doing an injustice by going oral..... but when I talk to someone who has fought against the tube... they will encourage me to keep going orally.  It is so hard to know what to do.  It is so hard to make the right decision. 

Right now - we are doing a little combo. It is really not working well - and I'm afraid we will have to go with something and stick to our guns soon.  We put medicine through the tube and some MCT oil to supplement our calories.  We give him high calorie baby food.  But .... soon..... we are going to have to make a hard push to go back to all oral or go tubing.  Because - when we use the tube ... he does become lazy with the bottle.  Example: today - he doesn't want to eat ... he wants to be "fed."

Any insights?

Thursday, January 6, 2011

Bragging Rights!

So... I've spent a ton of time "expressing" myself.  Telling some stories about our family.  Telling some very personal experiences.  Talking out my hopes and dreams for our family.  But a blog should not be all serious and should have some fun things.  So this is my bragging post.  Everyone should have one. Let's start with ...

Andrew: 2 years, 2 months
Knows his colors
Speaks in complete sentences
Repeats the funnies things - at appropriate times
Says, "Please, Thank you, and your Welcome" all the time (very proud of that)
Can count to 20
Can find just about anything I hide
Can reach just about anything in our house
Can figure out just about anything.... he will work and work to problem solve
Opens and Shuts doors (sometimes on Addison's fingers)
Loves Thomas the Train and Fireman Sam
Is really starting to grasp the concept of coloring
Sings the words to MANY many many songs
Can put puzzles together like nobody's business. (Last night he did one with no boarders.... just 8 shapes that made a train)

Photo taken by Liz Wilson

Knows her colors
Knows her letters - can say the alphabet and identify letters
Can count to 10 very well
Loves to sing and dance!!
Loves to "draw" ... which means color, marker, or draw on anything
Loves to Read
Is interested in anything that will drive Andrew crazy
Wants to dress herself (and he is pretty good at it)
Is a great "mommy" to Alexander - she wants to sit next to him, hug him, etc
Can be found hiding when it is time to clean up
Is manipulative.... will look you strait in the eye to see if she can defy you (and yes.... I love that she is a little Kristen)

Photo taken by Liz Wilson

Has occupational therapy 2 times a week
Has physical therapy 2 times a week
Is  regularly taped with Kenesio tape (I learned from a great teacher and am loving it!)
Is really starting to "get" head control.  He sits at ease and his head does not flop around anymore!
Is starting to coo regularly - see video below ... but that is from a while ago... he now just coos all the time
Plays with toys at midline and has started to pass toys from one hand to another
Sits alone on the couch all the time. LOVE this!!
Jumps in the Jumper (actually .... I help him "jump" ... but every once in awhile he jumps)
Is starting to lift his head up when on his belly
Smiles. Smiles. Smiles. What I won't do to get that kid to smile :)
Is eating aprox. 10-12 oz a day in addition to stage 2-3 baby food. 
Is LOVING table food.  I might just soon start to puree our table food for him.
Is slowly growing. But he is growing.
Photo taken by Me

Alexander talking

Videos, Videos, Videos... and a few other projects

I love my kids. I love my amazing photographer who took almost all of these photos (at least the professional ones of Alexander) ... you can sort of tell which ones I took :)  If you are interested - check out Liz Wilson's Photography - because she's awesome.

I'm also pretty proud of the video I made for the Child Development class at our school.  It was to let them know what it is like to be a mother of a child with special needs. 

And.... I'm in the process of making a new video. This would be more educational about what it is like to be a child with special needs.  I'm interested in quotes, comments, etc... that can help enrich the meaning of this story.  I would like for the video to be told from the perspective of a person with special needs.  I don't really want to post everything (I want some of it to be a suprise!) but .... for example ..... I look at teenagers and older people who have needs that are more pronounced, and I think..... that person was once Alexander.  The remarks, stares, etc... are only starting here in our family. I know some people who have been on the receiving end of this for many years.  Everyone is someone's child.  What would those people feel like if it happened to them? If there is anything you wish you could say to the public - please - post it or pm me .... I am interested in gathering honest and true emotions.  I seriously can not wait to get this idea out of me!! I've already found the perfect music and have started to gather quotes, thoughts, and ideas.  I'm so excited!!!!

Anyway - I have a few other projects on the burners, so I will update everyone as soon as I can. **cross my fingers**

Monday, January 3, 2011

In a Seizure free world....

In a seizure free world....
there are no frantic phone calls from Alexander's nurse.
there is no Keppra or Diastat (which scares the crap out of me because we have to use a syringe to get it out)
there is no running out of the building at high speeds to rush home to meet the ambulance
there is no praying the entire way home that he has come out of the seizure on his own
there is no questioning... that I might have done something wrong ... to cause this one
there are no phone/text/phone calls to Raymond .... trying to explain what is going on, but that I will hope to handle it

But we don't live in a seizure free world. We live this life. And.... in our "seizure" world.... we have those things mentioned above, but also stuff like this:

I'll take my world with seizures.... I just wish they happened a little less frequently.

Sunday, January 2, 2011

Dear Andrew and Addison

After we found out about Alexander, I actually started a journal where I wrote letters to the twins.  I was so out of it... so depressed, so emotional - I was afraid I would never return to myself.  I was afraid I would never have real laughter again. I was afraid I would never be me again. And that my twins would never know the mother they had.  Luckily, I can say now that I'm pretty much back to myself  ... pretty much.  But also - there is a woman who inspires me, Lauren, and her and her friends are leaving a legacy to their children.  It is an amazing idea and you can follow her blog about Norrah if you like.  But reading her new idea reminded me of my journal and today I spent sometime with my twins alone (we met my dad for coffee and hot chocolate) and had a blast.  I started to think about what I want them to know.  You may think this is totally off the wall - but... here we go.

Dear Andrew and Addison,
There are things that should always be important to you - God, faith, friendship, loyalty.  You should live your lives by the fruits of the Spirit.  There is something else you must keep close to your heart. The 5 of us. And more importantly, the 3 of you.  Our family must remain intact.  There will be days you may resent Alexander, but you must form a team - the three of you.  You should remember that I love you all - beyond compare.  My expectations for you are different as each of you are different.  But if I split my heart in 3 it would regrow a thousand times to support my love for each of you.  If Alexander is sometimes set to different standards, it is because what is a great achievement for him may come easily for you. Please rejoice with us in all that we do as a family. We are a unit. No one can break us. You may hear things that you don't like. You should never talk about one of your siblings in a negative light - that includes each other. If you have a disagreement, you need to work it out - in private. In public - you need to stand united... with Alexander.  You will know what to do. You can be strong together. You have been given a gift - a special brother who is going to bring you joy every day. When you falter, your father and I will always be here for you...... and you need to be there for each other. I love you with all my heart, Mommy

Someday I will be gone - and they will be responsible for the decisions for Alexander. I pray that they will be strong and united. In junior high or high school = when children can be mean .... Alexander is only 1 1/2 years behind them.  I pray they will stay united with him. They will be proud of him and proud of each other. When I take Alexander to his therapy, etc... I pray they will know that I love them beyond measure.  Thanks for letting me share - I might write another someday :)

Saturday, January 1, 2011

Letter for my Friend

Pink has this great song called Conversations with my 13 year old self. It is a perfect song because she goes back and tells herself things as an adult... because 13 is that awkward difficult year. So.... I am having a "conversation" with my last night self.  You see - things here are so weird, that even our "normal" I sometimes forget how weird it is.  I have to work to become relaxed. As for Raymond - I heard him laugh last night like I haven't heard him laugh in awhile.  Our friends were just what we needed. Until the topic of babies and pregnancy came up.  Here is where I should maybe go back and slap my 2010 self.  People were very interested... did you nurse all your kids? The easy answer should have just been, "yes - for awhile."  In my defense - there were other follow up questions, but the reality was I shouldn't have confessed that I nursed Alexander... a baby with no suck reflex. And that I was so disappointed when I found out he hadn't been sucking that I yelled at the lactation consultant.  And this version of our conversations is edited to make me look good. hmmmm...... Until a friend who always whips me back to reality stepped in and said, "Stop scaring the guests"  :)  Which was great advice.  So..... now that I am completely sober... let me tell you what I should have said last night.  I'm posting this on my blog instead of in a personal e-mail because.... well - if you know me - you will know that my mouth runs before my brain sometimes and I might have to refer to this in the future. FYI - I was, am, and continue to be totally thrilled for her. totally. and told her that. I just sometimes don't realize how scary my life could look from the outside in.......

Dear Friend,
First and foremost - you are going to be a great mom!!! You are warm and loving and your husband is going to be an amazing father. Here are some things I should have said when we were talking.
It is ok to be scared about being pregnant. Really.  and.... I don't take it the wrong way if you were scared you would have a child with special needs.  BUT I can tell you this......almost all babies are healthy, full term babies. They come into this world naturally and they grow up completely healthy.  Almost all babies. The chances of you having a baby that would do anything but this is so slim.... but God never gives you more than you could handle.  If you believe that, then you will believe that however this baby comes, whatever this baby becomes.... it is because God chose you two to be together in his master plan. Sometimes people want a girl and get a boy - or vice versa.... I know this is not you - but I also know these people have to adjust their thinking.  And I know a ton of people who say, "I had all boys and God knew what he was doing because I don't know how I would have handled girls!"  The point is again.... please remember that God has given you the greatest miracle of all...... an unbelievable thing is happening..... and as we are close friends - it is probably overwhelming to see a baby struggle and wonder.... will my baby be healthy?  I believe the answer is yes. Yes. Yes. Yes. .......YES.   There is a reason things are  called RARE disorders - because they hardly ever occur.  And I took care of our entire county - so don't worry :)  But.... if you had a child who came out with blond hair and you envisioned dark hair, or was a girl and you envisioned a boy, or needed a little extra care in the beginning - it is because this is the baby that God chose for you. You will be the perfect match.  He doesn't make mistakes. I love you to death - and any questions you have... please come talk to me. I promise to keep the scary stuff to a minimum.
Enjoy being pregnant. You don't know how many times you will experience it - but .... it is such a unique privilege to be able to carry a baby while life is created. **Sidenote.... that used to be my favorite phrase to Raymond... When I was tired, I would just tell him, "I'm creating life over here and it is exhausting."  :)
Love from us

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