Mr. Caleb is Pleasantly Surprising

This morning was Caleb's ECHO procedure.  I had already had it in my head that he would not cooperate and we would have to do it at Children's on Monday during his hernia repair procedure. After posting on Facebook yesterday requesting prayers I had a fellow mom suggest to desensitize Caleb to the procedure by showing him YouTube videos of what all is done.  (Thank you Keri) I did that.  As the video was playing I was touching him and explaining that it wouldn't hurt and the little girl on the screen isn't crying so it must not be uncomfortable.  We talked about it several times telling him that we were going to so and see a doctor (we call everyone doctors, its just easier) and they would be looking at his heart on a TV.   When we asked him if he wanted to see his heart on a TV he signed "yes", so I was feeling a little confident that he was going to handle this just fine.

We get to hospital and the best distraction for my twins is the TV.  So we watched Price Is Right and we clapped along with the silly contestants and got all silly.  They called Caleb back and we headed right into the room.. It was going smoothly thus far!

There was a big comfy chair upon entering the doorway and he decided that was where he was going to plant his behind and sit.  The technician asked him to remove his shirt and lay on the bed.... That's when things started to get a little tricky.  He started to fuss and twist and turn trying to get away.  We asked her if we could go slowly and explain everything to him and she was wonderful.... she even took the doppler and the goop and put it to her chest first to explain what she was going to do to him.. He was still very hesitant and signing "no, no, no" pretty constantly but then super daddy stepped in and asked if he could hold him on the bed to help him.  The technician said she really did need him to lay down and I got that feeling right then that it wasn't going to work.  Daddy went ahead and sat on the bed and put Caleb on his lap and asked if we could at least start out that way and see what would happen once things started..

SOOOOO..... in daddy's Caleb was fine, he was still, he was interested, he was perfect!!!! He sat on daddy's lap the entire time and she was able to see all the areas of the heart that she needed to.  When Caleb was getting squirmy she would turn the colors on and he would start staring at the screen again is awe of its changing colors.  He actually sat still for about 15 minutes, perfect to get a read on everything that they needed to see for this test.

Who woulda thunk it??!!

I am so proud of the fact that he is tolerating more things and even if he doesn't understand what they are doing he trusts his mommy and daddy enough to know if we say it won't hurt, its not going to hurt... HOORAY for progress...

Now

We 

Wait....... For results

AND Surgery is set up for Monday with a 6:30 am arrival time.  Surgery will take a little better than two hours so continued prayers appreciated.

Prayer Request for Caleb

Caleb will be having surgery on Monday June 16th to repair an Epigastric Hernia.  He has had this for several years now and its been getting a little bigger and a little bigger each year.  Its still pretty small but the surgeon told us that it will have to be repaired and having it done as a child is better than waiting until he is a teenager.  It will grow as he grows and become painful as the years go on. So, Monday Caleb is scheduled for dental work and we opted to go ahead and have the hernia repaired as well.

Here is my prayer request.  We went yesterday for his pre-op appointment with his pediatrician. He actually was very cooperative and calm, so calm that the doctor was actually able to get a good listen to his heart.  She asked when we see the cardiologist again for him... "UMMMM?! That is the only "ologist" we don't see" is what I told her.  She said she was hearing a murmur and felt that we better go ahead and have an ECHO done before surgery on Monday.  It could very well be nothing and its just a precautionary test or we may have to add the cardiologist to our large list of doctors.

I need prayers that he will stay still for the test, that we can explain to him what is being done and that it won't hurt him.  We need to have him understand that if he just sits still for a few seconds it will all be over and we can go home.  I hope that tomorrow is one of those days that Caleb surprises me.  I pray that this is nothing but a precautionary test that comes back normal.   There are so very many many many online Down Syndrome mommy friends who's children deal with heart issues and I have always felt relieved that we escaped that common symptom of Down Syndrome.

I would appreciate your kind thoughts and prayers for my sweet Caleb over the next few days.  I have heard that this is a painful recovery and he has to miss a whole weeks worth of fun activities at Camp Confidence this year.  His brother Isaac will actually get to go do something alone without this twin for once in his life..... (and mom's little nervous about that too..LOL)

Freiberg's Infraction

Yet another word that I learned today that I would not have cared if I had never learned it...ever!

Camille has had some pretty bad toe pain since at least December.  We saw our pediatrician about it once and talked to physical therapist about it while in treatment.  Both said that there is nothing to do for a broken or stubbed toe and to just wait it out and the pain should go away...  Well, several months later, the pain is still there and often worse than the week before.

I made another appointment to see our pediatrician last week and saw the Physicians Assistant there that we love.  She said that this has lasted long enough that it suggested an x-ray.  X-ray was taken Thursday and Friday morning they called and said they had already set up and appointment with a specialist.  When I asked if it was broken she said "Well, no, but there is something there that definitely needs attention from a podiatrist.  We got you an appointment for Monday morning"  YIKES!  That was quick is it serious?  And then she sprung the new word on me that I researched this weekend.  

Freiberg's Infraction.

We went and saw Dr. Hewitt this morning and he stated that this is a common issue found in dancers, which Camille is not.  Its also more found in females between the ages of 12 and 14, but its apparently rare enough that people often don't find it until its to late.  As a matter of fact, the x-ray was read as "normal" at the hospital, it was only when the specialist peeked at it they found the Freiberg disease. Camille's issue was advanced enough that she needed treatment, or if left untreated, she would need surgery in 2 - 3 years..  SOOOOOOO

Camille is starting the summer out like no 12 year old pre-teen wants to.  With a "medical boot" that she has to wear for at least the next six weeks... No activity, no pressure on the foot, no skating, no jumping on trampoline, no SWIMMING??!!!!! (can only sit on pool edge or in water but no bouncing or swimming)  Bummer Camille... but it beats the alternative of surgery in a few years.  Chin up girly, at least we can decorate it with colorful stickers or something ;)

Wake Up Mom!

6:15am:        I have something dropped on my pillow right beside my head...startled I jump up to see what it is and it's Isaac with his iPad.  Then I hear the iPad say "WAKE UP MOM!".... he really is getting it, I am so elated that we are getting this kind of communication.  Best.Day.Ever!!!

S-l-o-w progress.... but PROGRESS is happening with the iPad

Our family has been blessed beyond words with help getting both boys an iPad for communication purposes. Being a larger family that always seems to have something "pop up" that uses unbudgeted money and yet still trying to find that "extra money" to purchase two iPads was not something that was about to happen easily or quickly. We were thankful that the Lord provided for us in other ways.

Caleb received his iPad from his shopping spree via Make A Wish and Isaac was awarded one through an amazing organization called Shane and Wyatt Down Syndrome Foundation.  This foundation makes it a point to provide iPads to children with Down Syndrome who are having severe communication issues.  Isaac was chosen as their first recipient, how cool is that!?  You can click here to read our blog post about receiving it.

Caleb and Isaac have now had the iPads now for a little better than two years.  I must admit I have been getting discouraged with their progress using it.  I just KNEW it was going to be our answer to better communication with the twins. They are both whizzes navigating the iPhone for apps and games and YouTube videos they want to watch.  They really are impressive!  We have chosen to use the Proloquo2Go app to try to facilitate conversation.   I had high hopes reading reviews of the software that this is the right match for the twins to use.  After downloading it and going through kindergarten with it I began to have doubts that we, the family, and the school were properly trained to teach the boys to use it.  For the past two school years the iPads have just stayed at the school each and every day and during the summer months the iPad was sent home for us to use with them.  Honestly, we didn't know how to use them.  We didn't know how the school had been using them, so how were we to replicate that and keep the boys active with it?  It didn't happen.  I was frustrated, mostly with myself for not knowing how to use them to help my boys.

We started this school year with a few tweeks to the IEP in hopes for the iPad to be our answer again for communicating with the twins.  About 3/4th the school year has passed and I still am not seeing or feeling the iPads are 100% properly being utilized.  Not that the school isn't trying with them, just that I was expecting and hoping for m-o-r-e.  So about two weeks ago I sent a letter to the teacher requesting that the iPads be sent home with them each day after school.  One concern with this is the possibility of breaking it in transit.... that would be bad!  Another concern is that we would use them differently at home than the school uses them there and perhaps confuse the boys.   The only way to find out how to use the iPad was to take the plunge and request it be brought home and use them.

This past week I have seen two different instances that are worth sharing and to get excited about.  Easter weekend was a great time to give them some alone iPad time.  Just to hammer out buttons and let them explore the different folders and talking options.  To be honest they like to push the same button over and over and over and over and over and over....get my point?  Then they laugh hysterically when they push the talk button and the iPad says the same word 25 times in a row.  Its quite comical to watch them.  BUT in doing this they are navigating their way through the program and finding new funny words to repeat over and over and over and over again. This is learning the device in my opinion, so we let them do it.  At school they really refrain from allowing them to push the button more than once as it really is a time waster and a distraction to the rest of the classroom, so this was fun for them.

Saturday afternoon Isaac was browsing around different subject and pushing random buttons all over the place.  Not really making any sense of anything but just having fun saying different words... THEN, he found the dessert button.  He pushed dessert 20 times and out of no where formed a complete sentence.  "I want ice cream sandwich dessert.... and signed Please!!!" Whaaat??  He had the biggest smile on his face and brought the iPad directly to me and said the sentence again.  "I want ice cream sandwich dessert...and signed Please".  You better believe we ran right into town to get that boy an ice cream sandwich and he was very happy that he was clearly understood with what he wanted.

Then last night we gave him his nighttime meds to make him sleepy and  gave him his iPad to pass some time and hopefully learn more of the folders and words within them.  I can already tell he is very smoothly getting around and realizing where to push to talk about family stuff or school stuff or feelings or food.. This is VERY EXCITING to watch.. THEN after about 20 minutes of playing around he found the feelings folder.  He pushed "tired" and "sleep" buttons.  He looked at me and signed sleep, put down the iPad and laid down for bedtime.... What??!!!! This may seem like a tiny progress note but to me its a big big step.

Looking back over the past eight years I can honestly say I have been discouraged with a lot of things. Thinking that this might not happen or that might not happen.  Perhaps feeling like we should give up trying a certain thing with the boys only to find when we are about at the end of our ropes trying desperately to make it work something they "get it".  It took us signing words to them for almost 10 months before we got one sign back from them.  The first word signed back to us was Cracker.. Caleb wanted a cracker.  When that happened we were all so thrilled and emotional.  Now that I am seeing some actual progress with the iPad I am having the very same emotions.  They are GETTING IT.... They are GETTING IT!!!!

By far the hardest thing about parenting children with special needs is for me to be patient and allow Caleb and Isaac to do their thing when "they" are ready, not when "I" am ready or when I know the other kids have done something by time wise.

I'm not giving up on you boys!!! Mama wants to talk with you and get to know even more than I already do.

Being a parent... to kids with Down Syndrome

Tomorrow, March 21st, is World Down Syndrome Day.  The reason behind this particular date is that individuals with Down Syndrome have 3 - 21'st chromosomes.  Thus 3/21 has be designated World Down Syndrome day in their honor and to spread awareness of this disability.  Over the past eight years I have learned a whole lot about Down Syndrome (DS), not only by living with it in my identical twin boys both with DS but from online research, meeting other families and reading several books on the topic.  I would consider myself very knowledgeable but certainly still in the learning stages.

I remember when my husband and I were informed that baby B, Caleb, was confirmed to have Down Syndrome.  I was more afraid of not knowing what to do with him than I was about having a child with something wrong with him.  Long story short, twins came 9 weeks prematurely, one at 3# 3 oz and other at 2# 10oz.  We had no idea that they had DS.  Baby A (Isaac) was reason for emergency c-section as he was literally born with head trauma from being stuck in my ribs.  Due to this head trauma they were not able to identify DS in him but saw features right away in Caleb and took some blood to confirm.  I was told that having twins both with DS was very unlikely and certainly very uncommon so they would wait until Isaac (2#10oz) was bigger to draw blood to test for DS.  Two weeks later Isaac developed NEC and was taken to Children's Hospital in Pittsburgh to have surgery on his small intestine, at which time they removed enough blood to confirm that he did indeed also have DS.  In our opinion, as mom and dad, we were grateful that both boys had it versus one with and one without.

Down Syndrome is most certainly scary to brand new parents. Down Syndrome is most certainly scary to experienced parents who have children growing up into adults.  Down Syndrome is most certainly scary to think to far ahead in the future about.  Down Syndrome shapes and molds a families lifestyle differently than those without a family member with Down Syndrome.  Down Syndrome is filled with uncertainties, no doubt.

BUT.... I am going to removed the words Down Syndrome from the above statements and fill it in with the word Parenting:

Parenting is most certainly scary to brand new parents.  Parenting is most certainly scary to experienced parents who have children growing up into adults.  Parenting is most certainly scary when you think to far ahead into the future.  Parenting shapes and molds families lifestyles differently than those who have no children. Parenting is filled with  uncertainties, no doubt.

Looking back on the past eight years am I going to say that raising children with Down Syndrome is as easy as raising children without... NO WAY (I have three typical children)!!! Would I say that raising children with Down Syndrome feels fair all the time... NO WAY.  Honestly, I selfishly get sad and down sometimes when I see other families who can just pick up and go to the drive in movie theater or have fun together at an amusement park, or even just go for a walk in the woods together.  Things like going to a ball game or swimming pool are just easy fun things to do.  But my circumstances are different than those raising children with just Down Syndrome.  My twins are non-verbal and also have Autism.  Autism is a whole different story that I won't go into on this post.

What can I say that I have learned the most about raising children with Down Syndrome?  I have learned that I was (and still am in many ways) very selfish.  I did what I wanted when I wanted with my other children and I cannot do that with my twins.  I have learned that unconditional love trumps selfishness.  I have learned that people with Down Syndrome just want the same thing that you and I want.... someone to LOVE them and NOT GIVE UP on them.  I have learned that the saying "Children with Special Needs does not take a special family to raise them, it MAKES a special family" is so very true in more ways than I can mention.  I have learned that people with Down Syndrome are beautiful people who just want others to take a minute to see them for who they are and accept that they are a little different but amazing in their own way. I have learned that I will never stop learning what I means to put others needs in front of your own.  The Lord works in mysterious and wonderful ways when it comes to something one might consider a trial in life, only to come to realize that it is in fact a blessing!!

My three older children have learned a valuable lesson that I can honestly say I did not know as a youngster. My boys have opened all of our eyes to sympathy, empathy and compassion.  These boys have changed my world and might I say for the better.  I pray that what I've explained here today does not make it seem as though raising my children is a burden but in reality a true blessing.   Some days are easy, some days are hard... but WAIT, isn't that the same thing I could say about my three older children without Down Syndrome?  You betcha.

When people say to me "I don't know how do you do what you do?", I can simply just say in love and truth, because they are my beautiful children and you would certainly do the same if they were yours.  Down Syndrome is not something that scares me, people who don't take the time to understand and enjoy people with Down Syndrome does.  Through all its ups and downs, parenting a child with Down Syndrome is a gift and I find it a privilege to be Caleb and Isaac's mom.

Happy World Down Syndrome Day 2014!

Throw Back Thursday - taking my blog back!!!!!!!!!!

Today as I searched Google for something Down Syndrome related I came across these beautiful twin boys when I searched images.  These are MY beautiful twin boys!!!  As I stared at this photo I became so sad that I have let my blog go.  The idea of sharing their beautiful faces and personalities with the world to perhaps create a sense of awareness and acceptance has been swept under the proverbial carpet.  Life has gotten in the way.

I am NOT the same person or even mom as I was 8 months ago when I last blogged.  So much has changed and yet so much has stayed the same.  Its time I start cracking my knuckles and diving back into my blog.

See ya soon!!!