Thursday, August 28, 2014

Picture..Pink..Phone..Mama

Yesterday was day 2 of school for the year.  Caleb was so adorable when I was about to put him on the bus.  He stopped abruptly turned around and waved to me, then he signed "Picture..Pink..Phone...Mama".  Caleb is so very much into routine and the first day of school I took tons of photos and he expected I was going to do it on day 2.  I didn't have my phone on me and promised I would take it tomorrow, and he sure did not forget..

So here he is:


and then after I took this one Caleb insisted that I get one of him and Isaac.  Bus was already in driveway and I was hurrying so photo is blurry but still super cute:


I have a feeling I will be taking lots of back to school photos this year :)

Tuesday, August 26, 2014

Back to School - Bawled like a baby... I DID!!!

I have to admit I have yet to EVER cry on the first day of school.. Usually I am certainly sad to see summer break end but relieved to finally be able to tackle the housework and try to get ahead of laundry with kids off at school.  I have been taking photos of my kids with signs stating the grade they were entering way before Facebook.. Tristin is a junior and I have her kindergarten photo :)

WAIT... WAIT... Tristin is a Junior.. That is what teared me up and made me cry uncontrollably this morning.  As I'm watching my kiddos make their traditional first day of school poster I reflect on taking Tristin's photo as an excited Kindergartener about to be homeschooled. Now today I watch a gorgeous young lady still scribbling on paper at mommy's request so I can always remember what grade she is going into and what year it was.  (I am already predicting my forgetful mind wondering what year photo was taken and what grade she would have been in)

Then I looked at my Camille who has definitely blossomed this summer and has taken the lead in being the tallest sibling.  She passed up Tristin by a whole inch already!  She only has a few days until she turn into a mouthy know it all teenager, and I think she's had enough practice this summer to already master it on her birthday!!


Elijah is in the MIDDLE SCHOOL!!  Whhaaatttt???? My middle child is in the middle school?  He is actually pretty excited and laid back about it.  The girls both seemed nervous and concerned about meeting new people and making all new friends, Elijah has no worries and he is ready. Last night as girls were picking out their first day of school outfits here is how our conversation went:
Elijah: "Why do girls have to do that mom?"
Me: "To be prepared for their first day"
Elijah: "I'm just going to throw on the first thing I can grab in the morning"
.. That's my Boy!




And finally, the twins are entering 2nd grade.  They participate in the Autistic Support classroom in our public school.  Having children in a special education classroom can be and just plain ole IS stressful.  I am hoping for a better year for them and plan on taking a more active role in their education.  They deserve the best and I pray that God leads me to help them get that.  When I told them that they were gong back to school today and riding the bus to go see their friends they both signed "NO!".  I always say they are the mouthiest non-verbal kids I know...LOL





Now off to canning my garden goodies.  Today's agenda.... Salsa!!!  Have a Great Day Kids!!

Tuesday, July 29, 2014

Child of the Month x2

It was an honor to be asked by a local organization who helps us financially with some gas money for our frequent road trips to Children's Hospital in Pittsburgh to write a little story on the twins to share on their website.  Caring and Sharing for Kids truly has been an amazing blessing to our family and many many more like mine.  It all started from local people who have golden hearts and wanted to find a way to help local families raising children with special needs in any way they could.  Please take a minute and check out their website and if your ever looking for a worthy cause to donate to I can guarantee this is a great organization.

Click Here to the LINK to our story!


Thursday, July 3, 2014

Hand, Mouth, Foot Disease...No 4th of July Picnic (pun intended)

Seems our family just can't catch a break so far this summer.. OH WAIT, that has been our family for the past four years LOL! On Saturday we went to the Wykoff family reunion. The Wykoff's are my side of the family and we don't get to see any of them other than at reunions or on Facebook.. Love Facebook for that :)

 When we got home around 9pm Isaac seemed to have broken out in a blistery rash on his hands and bottoms of his feet that we didn't notice all day long. He had this weird rashy thing on his diaper area that started Friday but I figured it was from the hot weather and wasn't to concerned. Now that it had spread, it was concerning, and I took him into the ER Saturday night only to find that he has Hand, Mouth, Foot Disease (HMFD). They basically said there was nothing to do as it's a virus and told me to give Benedryl as needed for itching. Told me it was very contagious and to be careful with siblings.... With that being said I KNEW CALEB WOULD BE NEXT!!! There always seems to be this twin competition they have going when they get illness, who can get sicker??!!

 Fast forward to Tuesday, Isaac was breaking out even worse so I called pediatrician and they said to bring him in just to make sure it was HFMD. The appointment was at 10am, as I was bathing boys to get them ready to take in I noticed Caleb was getting some bumps so I figured might as well have him looked at while we were at doctors office. Upon inspection it was confirmed that boys both had HMFD and we were sent home to ride it out. Today, July 3rd, Day Six of Isaacs outbreak he looks better but still developing a few new blisters.. Day Three for Caleb and he wins the twin competition hands down. He is broke out with more than double or triple the blisters Isaac has and he looks horrible. There is no fever present in either twin and blisters are located in way more places than just their Hands, Mouth and Feet. Bumps are on elbows, knees, ears, lower belly, legs and back of neck. Their bodies are not covered but there are bumps everywhere.... How about I show some photos:
Both boys acting normally, no fevers and eating/drinking well. So for us its just looking at all those ugly bumps for a few days, OH... and staying away from any family events going on this weekend here on the farm. Did I mention that this weekend is the Bi-Annual Hanzely family reunion? Lots and Lots of family members come from several different states. Lots and Lots of new babies I have not even met yet and family I haven't seen in years... Boo Hoo to us I guess. But as awful as this situation is for us there are just things that the boys do that melt my heart and make me realize how very lucky we are to have these beautiful boys in our family. Look at how I found them sleeping this afternoon:

Did you notice how they were sleeping holding hands?? Thank you Lord for that refreshing moment to see just how blessed we are.  Always Always seek out the positive in each moment.

Tuesday, June 24, 2014

Unstable Airway Plan of Action

Today we took both boys back to Children's Hospital in Pittsburgh to consult with a new ENT Dr. Mehta who specialized in subglottic stenosis and airway issues.  He was super cool with the boys and I am happy we were referred to his airway clinic. 

We were due for an ENT check up anyhow as we have not been seen since Dr. Ottesen left CHP almost two years ago.  We had more to discuss than just the airways.  Both boys have a perforated ear drum but Isaac had two are both of his are classified as large holes and may need repaired.


We have decided to go forward with another scope to determine the size of their airways so that everything is documented for future surgeries as to what size breathing tubes to use.  They will scope and biopsy their trachea.  Both boys will have their ears evaluated and fixed if need be.  Both boys with have two teeth extracted and dental work done.   Then Caleb will go forward with his hernia repair and the lump that we felt a few weeks back is going to be removed from his neck.  The doctor said we might as well get as much done under one anesthesia as we possibly can so its a lot but they felt they could handle it.

I was totally hoping for a summer surgery to keep from missing to much school but the soonest we could get them both in on the same day with the same surgeons is Friday September 19th. 

We have some answers, we have an action plan and now we move forward. 

After today's appointment we had lots of time on our hands to do nothing as we are staying in Pittsburgh overnight since we have another appointment tomorrow.  The boys favorite thing to do at Children's is to goto the Pop Shop and get some popcorn so that we did..


and then we watched a tv show in the waiting room and Isaac played Angry Birds on the iPads provided for the kids to play on... will share photos later as I am not at home to save on my computer but boys were good sports today and we enjoyed a quiet day of not having to rush around and drive a total of 5 hours back and forth... That gets old and its tiring for sure. 

Tomorrow we head to Autism Clinic for med checks. 

Thursday, June 19, 2014

Strawberry Jam with Honey

Today was officially the kick off of my canning season for 2014.  This may not be exciting to you, but it sure is to me :)  Since this is Thursday I can classify today as Thankful Thursday due to the fact that its Thursday and I'm Thankful that I know how to preserve food and have all the supplies to do so.  I am thankful that my mom and grandma who taught me how to can when I was younger despite the unwilling attitude I used while learning.  

Today, I canned 4 quarts of fresh picked strawberries and made 10 pints of strawberry jam.




I have made strawberry jam for several years now, but I made it differently this year as I have been eating differently.  I am making a conscience effort to cut out as much sugar as I can on a daily basis and eating no processed food.  Thus far I have lost more than 20 pounds and I really do feel good.  No stomach bloating or pain, more energy and dropping pant sizes quicker than I could have imagined without exercise.  (Honestly, I'm saving exercise for when I plateau and need that bump to keep losing)

In the past I have made most of my jam with Splenda to cut down on the sugar content.  Its very tasty and better for you than using the 8 cups of sugar it calls for making a regular batch.  BUT this time I thought I would try no sugar and some raw honey.  So far it tastes wonderful.  I traditionally make the last pint as a sample jar and eat it on bread while its still warm.  Its a bit tangy and tart but it has the delicious flavor of a strawberry still there.  Often when you put the called for amount of sugar in the jams I feel like they are just so sweet you really lose that true fruit flavor.

Warm jam on bread.. YUM!


Here is the Recipe I used:

4 pounds of washed and hulled strawberries
3/4 c. Raw whipped Honey
1 c. unsweetened apple juice
1 1/2 packages of No Sugar Needed Pectin


It's a Keeper!!



Tuesday, June 17, 2014

SURPRISE!!!! Caleb has an Unstable Airway

 Sunday, June 15th.... Happy Fathers Day!!


We started our day with a yummy breakfast outside on the deck together as a family praising God for the wonderful father Tom is and for all the blessings we have because he is such a hard worker and provider for our family.  Then we were off to church and a relaxing afternoon before we headed off to Pittsburgh for Caleb's hernia repair and dental surgery in the morning.



We decided to head to Pittsburgh for an overnight stay to save us from having to leave our house at 3 am like we did a few months back for Isaac's last outpatient surgery.  After that trip I realized I'm getting to old to go off of four hours sleep and still be required to function.  I was so exhausted it took me a day or two to recover.  To avoid this again we went and stayed with Tom's little brother Bill and sister in law Dulcie.  It was nice to sit and visit and see their apartment for the first time before they move into their new home they just purchased.

Monday, June 16th


Caleb decided to wake up at 4:30 am and "STOMP" up and down the steps to practice his stairway skills.  We do not have stairs in our house and Caleb thought this was a great time to get better at going up and down them himself.    

We left at 6 am and arrived just before our scheduled 6:30 am check in.  I was rather impressed that Caleb was signing doctor and giggling with no anxiety on the way into the hospital.  Maybe this whole doctor thing is getting better??!!  Welllll, then they put the ID bracelet on his wrist and the story changed.... he was mad!!






As per my request with the same day surgery scheduler prior to surgery we were escorted to a fun underwater room with the sensory bubble light brightly displayed.  Caleb loved it!!!!  I found out about this when Isaac was in last time.








It made me dizzy...LOL


As we were talking with the four different doctors who would be tending to Caleb's procedure (General Surgeon, Anesthesiologist, Pain Management, & Dentist)  he was enjoying some much needed bonding and playtime with his big sister Tristin.  He LOVES to play with her hair and run his fingers through it and make a mustache on his face with it.




The versed came and Caleb was happy in no time, so off to operation room he and daddy went.... 
*** NOTE: Daddy would NOT allow me to take photo of him in scrubs,,, party pooper *** 
Once he was fully asleep Tom met Tristin and I in the surgical waiting room.  We were told it would take about two hours so at that time we went ahead and got some breakfast and began eating it.   Tristin realized she did not put enough brown sugar in her oatmeal and asked Tom to come back to cafeteria with her to get some more.  I was sitting alone enjoying my coffee when the General Surgeon and the Anesthesiologist approached me and asked me to come into the consultation room with them.  At first I wasn't to alarmed but then I realized that we were no where near the forecasted two hours of wait time.

They started by saying he is doing wonderfully and he was sleeping.  Then they said that they unfortunately had to cancel the surgery.  I then grew very alarmed and wondered why in the world it would have had to be cancelled.  The Anesthesiologist went on to say that he knew he was going to have to use a smaller breathing tube for him due to his subglottic stenosis and he started with a small tube.  That one would not pass, he went to the next smaller tube, that one would not pass, down to the next size and it would not pass.  At that time he consulted with and ENT to come and scope Calebs airway and found that his subglottic stenosis has progress to a Stage 2 level.  There seems to be some scar tissue that is building up and causing more of a narrowing than he had before.  This is most likely caused from having breathing tubes inserted as a NICU baby and from the many surgeries over the years.   The General Surgeon, ENT and Anesthesiologist all agreed that the case must be cancelled due to an unstable airway.  My heart sank.

My husband then came back from the cafeteria and the doctors so graciously told the whole story over again to him.

The Anesthesiologist said he is so surprised that Caleb does not present with any symptoms such as Stridor and Croup, because he should probably have those symptoms daily.  He certainly does have Stridor and Croup when he is getting sick, but not on a daily basis.  

One of the most memorable comments a doctor ever made to us was when the boys were 11 months old, they had just both had their first scope of their airway done due to constant Stridor and Croup.  It was diagnosed at that point that they both have Subglottic Stenosis.  Dr. Bluestone told us that he cannot even understand how either boy is breathing without a tracheotomy yet their oxygen levels were fine.  That was a very scary statement and one I will never forget.   Now I hear almost the same kind of scary news 7 years later.

After the surgical team consulted with the breathing clinic and a new ENT we are going to see it was decided that since the boys are identical and because Isaac is actually the "more ill" of the twins, they want to evaluate them both next week.  I was totally thankful and impressed that they would suggest that and carry it through with an double appointment next week.  Apparently this clinic is a VERY BUSY one.




Please continue to lift the boys in prayer.  I am trying to not let this freak me out, but...... it's freaking me out!  My prayer is that the Lord give us the strength and understanding we all need to help the boys and bring their airways back to a healthy size to avoid this scare with future surgeries.

For those of you reading this far and unfamiliar with our beautiful family, our boys Caleb and Isaac are 8 year old  identical twins both with Down Syndrome, PDD Autism, ADHD and a list of medical issues.  They keep us busy, they scare the bejeepers out of us sometimes with the unknown, they bring us joy and sorrow and yet we feel doubly blessed in good times and bad.



Please comment if you have been through this ordeal with some words of encouragement and wisdom.
By the way, Subglottic Stenosis is what qualified each of my boys for their wish from Make A Wish.