Hannah's appt with the medically complex team

Hannah was referred to the medially complex team (diagnostic referral drs)  I told him that nephrology said they were surprised we hadn't been referred there before  now, dr M said I am surpised too!  He went through a lot of her medical history especially in the last year.  He was surprised that she hadn't had a 24 EEG...her nuero says we know she is having seizures but dr M said he wants to know if she is having continuous szs...I agree with him, I already know she is having more szs than we realize.  I told him about Hannah's leg swelling (just her right one) and he thinks she has lymphedema.  He changed her feedings so she is getting boluses at night too instead of continuous.  We haven't started that yet, he wants us to check her blood sugar in the mornings and we don't have a glucometer yet.  He also agreed that the mitrofanoff surgery is the best thing for her.  He was looking at her bloodwork and said it doesn't look like she has von willebrands..she does have some kind of clotting disorder so he was going to talk to hematology before out appt next week with them.
  We have an appt with orthopedics wed and next week an appt with hematology for her bleeding disorder and surgery.  then after Christmas we will have pre op. She is being admitted on Jan 9 for bowel prep and surgery is Jan 11.  Urology said they start feeding them 2 days after surgery and she has to have a bm to come home.  I figure about 1 week in the hospital if all goes well and she doesn't throw any curve balls at us :)
we are getting excite about Christmas, I think I finished my shopping today and next week, our middle daughter Jenn and her family are coming..I can't wait to get all my grandbabies together again.
  Chuck, Hannah and I want to wish you all a very merry Christmas!

This shows the swelling in her right leg

A Tribute to Special Needs Moms

Hannah's surgery

Talked to urology today and Hannah's surgery is going to be on jan 11, she will be admitted on jan 9th for bowel prep (thankfully she will be in the hospital and I don't have to do that )   She asked if I wanted the first available but i told her she has an appt with the medically complex team on dec 8 and the 21st sees hematology...glad we won't spend another Christmas in the hospital.

Urology Appt and Bronch Results

It was a long day yesterday.  Chuck went with us so we had planned on leaving at 8:00...a few minutes before he ran to get gas in the van.  Since the windows had a lot of dew on them, her rolled them down so he could see.  unfortunately the passenger window wouldn't got back up. He had to take the whole window apart and get it back up so we could go.  He found out the motor had gone out in it, so he got the window almost all the way up.  He got the part later so he can fix it...so that made us 1/2 hour late leaving but since he was driving and could drop us off. we go there on time.
  The testing for urology was first.  While the nurse was setting up and waiting for the dr we talked about Hannah's problems and I asked her about the Mitrofanoff and she said that she would definately qualify.  She brought it up to the dr that did the testing and again the dr that we saw in clinic.  He is going to go ahead and schedule it, it should be a simple procedure unless they get in there and she doesn't have an appendix.  Then they will have to do more.  This would make things nice for me cathing her but really good for Hannah!  He asked me what drs does she see?  I just kind of looked at him and he started asking different drs if we see, then he asked if we are followed by the medically complex team?  I told him no but the funny thing was it was listed on my paper to ask the drs why we aren't followed by them.  He got us an appt on Dec 8 with Dr Malatack.  He wants us to see him before we have the surgery.
  After lunch we saw Dr Chidekel, our fav dr to do the bronch.  Brian, one of the resp therapists came over to us in the waiting room and started chatting, he said long time no see, I laughed and said that's a good thing  :)  He was there to help with the bronch so they took us back pretty quick.  They did see a lot of Tracheomalacia in her airway when she coughs.  That is why she is on the vent but I haven't been using it as much during the day as I used to.  She does have room in her airway to go up a little bit in size of her trach but not enough to go up another size so we have to do another custom trach.  She is in a size 5.5 which is the largest pediatric trach, the length of that is 52cm and an adult 6.0 is 70cm so they are ordering in between, a custom 60cm. She already gets a custom trach because she has a cuffed trach and thebivona flex.tend doesn't come with a cuff.
  We had a pretty good day, chuck took his work laptop and got some work done while we were there.  We met my mom and took her out to dinner so that was nice.

Hannah long overdue update :)

Hannah today in her sparkly outfit today

  we have had a pretty good summer, chuck and I got to go on a vacation starting Labor Day night, we went to Williamsburg til friday and then went to see our middle daughter Jenn, her husband Bob and our beautiful grandson Jonas til Sunday...Can't believe Jonas will be a year old on Nov 5!  He is growing so fast and doing really well..we really miss them.
  Hannah has had a few colds and  fevers off and on for a while, nothing major though.    Her bloodwork has been doing pretty good.
  I have to straight cath Hannah's urine every 4 hours during the day and overnight the nurses but in a cathter, tape it to her leg and let the urine run into a diaper.  She cringes almost every time we cath her and especially when we take the catheter out...they think she could be having bladder spasms..we get a lot of urine everytime and it gets to be a pain every 4 hours especially trying to find someplace to cath her in public.  We finally are going to do some testing from urology this tues (10/25) and see a urologist after, not our regular one, he isn't available that day.  Hopefully we can get some anwers.  I have been praying that they bring up having a mitrofanoff done, if they don't I am...something has to be done to make it easier.
  She is also going to see the pulmonologist and have a bronch done it clinic...her cough sounds like her tracheomalacia is worse.  He is hoping he can upsize her trach and see if that helps.  The only problem is I am not sure if we can get a custom bivona flex tend with a foam cuff in a size 6.0.  I haven't been using her vent a lot during the day so I am wondering if that's why.
  That is going to be long day so chuck took the day off since it might be dark going home.
  Pray for us for answers on tuesday.  I will try to remember to update when we get home.  Thanks for the continuing prayers.

pulmonolgy appt

Friday Hannah had a pulmonology appt.  For a while now she has had this weird cough that sounds like she is coughing her trach out.  And it gets hard to suction her.  I had suspected for a while that her Tracheomalacia had either come back or just gotten worse.  A little history,  Hannah aspirated right after she was born.  That resulted in a NICU stay of three weeks and her first helicopter ride.  that was the beginning of many aspiration pneumonias.  When she was 3 1/2yo she got her trach.  The next year we changed hospitals to AI duPont in Wilmington.  We were still in the hospital all the time for aspirations no matter what we did. We almost lost her several times.  Finally the pulmonologist (that we didn't like) suggested having a laryngotraceal separation surgery done.  It was a scary decision and I got in touch with our old ENT who had left U of MD and we trusted.  He said that he had even suggested having that done after she got her trach.  the next time she was admitted for an aspriration we had another pulmo (Dr C) that we had seen a lot...he gave me some good advice and we decided to do the surgery.  After that she never had another pneumonia!  While there a 3rd pulmo listened to her and asked if she had tracheomalacia since it sounded like that to her.  the next time we saw our pulmo I mentioned it and she said that no she DID NOT have it.  She did  a Bronchoscopy on Hannah.  When she came out she said she had very severe tracheomalacia!  That is when she put her on CPAP.  She had no bedside manner at all and I just didn't like her attitude.  We saw  Dr C again and I asked him if he would take Hannah as a patient and explained what had happened. He was more than happy to take her as a patient.  He is now one of our fav drs!  He put her on CPAP through the vent and I kept her on it most of the time.   Earlier this year I  decided since she was doing so good and her bronch looked good to not use the CPAP as much during the day.  Now, it looks like the tracheomalcia is getting worse so he wants too a bronch on her and see if we can put a bigger trach in.  He did stop a couple of her neb treatments, since her lungs stay clear most of the time.  But is that because she gets so many neb treatments ?  that's the question  LOL
  we also saw nephrology  and he did reduce her ferrous sulfate a little ( I am tired of that making her bms black and sticky) 
  Hannah keeps getting  splotchy spots and sometimes hives on her belly and groin area, it seems to be getting worse so I am going to make an appt with Allergy.  The nephrologist was concerned about that and we went over her meds again and still can't figure it out.  Leave it to Hannah to make everything hard to figure out :)   I have a pic on my cell but for some reason can't get it on here.

Opinion Outpost Surveys

I have been taking a lot of surverys for cash and gift cards..I had been taking surveys with Opinion Outpost for a while but never thought to look at what I had made....I was shocked when I had enough to get an $80 amazon gift card (could have gotten cash but knew the check would take a while and I want to buy something for Taylor's bd at amazon)

http://www.youtube.com/watch?v=GQYENKT5El0 I've been getting paid for my opinion! You can too! Check this video out for some amazing opportunities to get paid for sharing your opinion! Follow my link to join Opinion Outpost: www.opinionoutpost.com/join/8336127

Hannah is a blue rose

My sister Pam gave Hannah this blue rose blanket for her bd to go with this story

         Blue Rose
       


Having four visiting family members, my wife was very busy, so I offered
to
go to the store for her to get some needed items, which included light
bulbs, paper towels, trash bags, detergent and Clorox. So off I went.

I scurried around the store, gathered up my goodies and headed for the
checkout counter, only to be blocked in the narrow aisle by a young man
who
appeared to be about sixteen-years-old.. I wasn't in a hurry, so I
patiently
waited for the boy to realize that I was there. This was when he waved
his
hands excitedly in the air and declared in a loud voice, "Mommy, I'm
over
here."

It was obvious now, he was mentally challenged and also

startled as he turned and saw me standing so close to him, waiting to
squeeze by. His eyes widened and surprise exploded on his face as I
said,
"Hey Buddy, what's your name?"

"My name is Denny and I'm shopping with my mother," he responded
proudly.

"Wow," I said, "that's a cool name; I wish my name was Denny, but my
name is
Steve.."

"Steve, like Stevarino?" he asked.  "Yes," I answered. "How old are you
Denny?"

"How old am I now, Mommy?" he asked his mother as she slowly came over
from
the next aisle.

"You're fifteen-years-old Denny; now be a good boy and let the man pass
by."

I acknowledged her and continued to talk to Denny for several more
minutes
about summer, bicycles and school. I watched his brown eyes dance with
excitement, because he was the center of someone's attention. He then
abruptly turned and headed toward the toy section.

Denny's mom had a puzzled look on her face and thanked me for

taking the time to talk with her son. She told me that most people
wouldn't
even look at him, much less talk to him.

I told her that it was my pleasure and then I said something I have no
idea
where it came from, other than by the prompting of the Holy Spirit. I
told
her that there are plenty of red, yellow, and pink roses in God's
Garden;
however, "Blue Roses" are very rare and should be appreciated for their
beauty and distinctiveness. You see, Denny is a Blue Rose and if someone
doesn't stop and smell that rose with their heart and touch

that rose with their kindness, then they've missed a blessing from God.

She was silent for a second, then with a tear in her eye she asked, "Who
are
you?"

Without thinking I said, "Oh, I'm probably just a dandelion, but I sure
love
living in God's garden."

She reached out, squeezed my hand and said, "God bless you!" and then I
had
tears in my eyes..

May I suggest, the next time you see a BLUE ROSE, don't turn your head
and
walk off. Take the time to smile and say Hello. Why? Because, by the
grace
of GOD, this mother or father could be you. This could be your child,
grandchild, niece or nephew. What a difference a moment can mean to that
person or their

family.

From an old dandelion!
 Live simply. Love generously. Care deeply. Speak kindly. Leave the rest
to
God.
                        

Hannah's sweet 16 party and pics

Wow, we are so overwhelmed with all the people that came to Hannah's party on saturday...she was given so many cards, gifts, money and gift cards and she didn't need any of it...we will probably use it to make some needed modifications to our hallway from her room to the bathroom!
  Our friend Patti flew in from S Carolina on wed.  She was Hannah's nurse until she moved away a couple years ago.  She did everything including all the food, a cake, decorated cookies for everyone to take home.  I couldn't have done any of it without her! 
  there is a great organization called Icing Smiles Inc  that gets bakers to make cakes for kids who are frequently hospitalized.  They found a wonderful lady in Newport News VA to make Hannah's cake, she drove over 4 hours one way to bring it to us

The cake was beautiful and we so much appreciated all that Schonna did to get it here.

  there must have been at least 80-90 people there!  I have a lot of pics on my facebook page, see if this link works  http://www.facebook.com/media/set/?set=a.2040512223913.109353.1577530031&l=09594dcf88  I will add a few here  but there are hundreds of great pics and I have almost 90 on facebook

hannah and the Icing smiles cake

Patti and I, thank you so much Patti

both cakes with their matching colors

Hannah and Schonna that made the cake, thanks again!

our family minus our son in laws, again.

Hannah is sweet 16 today!

Hannah 7/95

Hannah 7/11

 Hannah at birth 7/95

Wow, so many emotions are attached to Hannah turning 16yo. I think this bd is hitting me harder than any other.  There are so many things that she should be doing at  16...driving, dating, arguing with us about clothes and boys...she should be thinking about graduation and where she is going to college...but instead Hannah is a 2 mo baby in her development...she is deaf/blind so that limits a lot of what she learns...she has no idea it's her bd and we have no idea what to buy her,  it would be so nice to be able to communicate with her, instead we have to watch her and figure it out...even a baby can let you know with his cry.  She doesn't go to school because she would always be sick...the only place she goes most of the time is Church on Sunday and to the dr. She has to have someone watch her 24/7.  I am sad for the things she can't do and won't do...but I am thankful for everyday we have with her, and am thankful that she is such a fighter and has defied all the odds when she was born...we never thought we would see her turn 16 but that is another milestone passed...and I am thankful for all the people we have met, drs, nurses, therapists and teachers....and so many lives she has touched by just being here...I once said I believe she is here to love and be loved, and that is still true!
  Don't forget her 16th bd party is next saturday the 16th. We never have a party for Hannah after the rough year we have had this was a perfect way to thank everyone for praying for her.  So far I have almost 80 names on the list that are coming..the invite is going to be in the church bulletin tomorrow.  so if I have neglected to invite you please know that you are welcome to come..just let me know early this week.

Someone I Love

Someone I Love

Someone I love relies on me in ways you will
never understand.
Someone I love endures pain and challenges that break
my heart and renew my spirit at the same time.
Someone I love is unable to advocate for themselves
for things that most of us take for granted.
Someone I love will never have the opportunities
that every child should have.
Someone I love will need unconditional love and support after
I am gone, this frightens me to the core.
Someone I love encounters pity, stereotyping responses,
and prejudice at every turn, because they look,
act, and/or learn differently than others.
Someone I love has needs that require me to
allow "outsiders" to have power and input in areas
that should be mine alone to meet.
Someone I love will continue to look to me
for everything in life long after other children are able to
assume a place as part of the world.
Someone I love has needs that require more
time and energy than I have to give.
Someone I love has needs that mean I am not
able to meet basic needs of my own.
Someone I love has needs that have become the driving
force behind major decisions my family makes.
Someone I love has changed me in ways I will never
be able to describe.
Someone I love has taught me about love and about
the really important things in life...
And still others don't understand what it is to be
me, they aren't living in my skin.
~Lori Hickman~

Beautiful Things Blog

 Please check out the  Beautiful Things Blog    They are going to Zambia and are having a give away on their blog to get everyone to pray for them...There is a button on the side of my blog too!

Hannah is turning 16yo...party invitation

It's so hard to believe that Hannah is getting ready to turn 16yo!

you are invited to help us celebrate!