A Wonderful Christmas

A Wonderful Christmas

We wish you a very Merry Christmas and a Happy New Year from our little family to your beautiful families.  Here is a picture of our Christmas Card.  I didn't send out very many this year, so please accept this as our card to you if you did not receive one.  Time and expenses made it difficult to send to everyone, because there are so many of you that mean so much to us.  Thanks to my sister, Holly, for taking the pictures and ordering the cards for me.  It was a huge help!

We had a wonderful Christmas this year, and we hope that you all did, too!  We have been able to spend a lot of time with family and friends.  It has been great to see everyone and spend time with those that we hold dear.  Santa Claus made it to our house, and the kids received many nice gifts from their Aunts, Uncles, and Grandparents. Elizabeth did not like Christmas Day.  I feel that it was too over-stimulating for her, especially with her Sensory Processing Disorder.  She did not like all of the noise, confusion and excitement that her brother was expressing.  We tried to get her to open gifts, but she wanted nothing to do with that.  We opened gifts for her, showed them to her, but she was not interested in them.  In fact, she was not really interested in much of anything until the next day when most of the noise and confusion was over.  She has, since then, played with her gifts. 

Celtan, on the other hand, was super excited about Christmas.  He was WILD about Santa this year.  He could not wait for him to come, and we had a countdown going on our chalkboard in the kitchen. Each day we would cross off the numbers and counted down how many "sleeps" until Santa.  His elf delivered a letter from Santa to him, which said that Celtan was on the nice list.  Celtan showed it and told everyone that would listen about the letter and about him being on the nice list.  He was very excited when Santa visited Grandma Kepple's house on Sunday a few days before Christmas. It was fun for us to watch and enjoy his excitement.  The magic of Christmas is best viewed through the eyes of a child, and we certainly viewed that magic through Celtan's eyes this year.  He was so excited when he opened each present, and thanked Santa for all of his gifts by shouting "thank you" throughout the day in hopes that Santa would hear him.  It was great. 

We had the Hackwelder Family over to our house on Christmas Eve to celebrate Christmas with them.  It was a really nice time, and we enjoyed having them all here.  Eric and Sandy weren't able to make it. They stayed in Erie as their twins are still in the NICU at Hamot.  We missed them, but we were glad that they were spending the day with their little miracles.  We all miss Jason's mom, who passed away a few years ago.  This was our third Christmas without her.  It will never really be the same without her here with us, but I could tell she was with us on that day.  I was making my sister-in-law a cup of tea on Christmas Eve, and it reminded me of Jeanne.  I know that she is glad that we are continuing to spend holidays and other times together.  The kids had a great time opening gifts, playing with each other, and again we saw the magic of Christmas in their eyes.  My favorite part of the night was when Markel and Alex gave us all our gifts from them.  I always look forward to this part of the night.  This year, they gave me a pretty pink lip gloss and hairspray.  Jason got a fake knife and a zombie arm.  Chase and Sadie by far received the funniest gifts.  Chase was given a pair of dollar sign oversized glasses and a large candy cane.  Sadie was given a pink zebra hat.  We had a good time with that and took pictures of them in their pimped out gear.  We topped it off by putting  my fur coats on them and taking pictures.  We all got a good laugh out of it.  It was a great night spent together.

On Christmas Day, we opened gifts in the morning.  Jason made breakfast while Billy and I sat on the couch and shouted diner-style orders to him through Celtan's new music recorder's microphone.  I don't think Jason was very amused, but Billy and I got a good laugh out of it.  We love that Billy stays with us on Christmas Eve. It is nice to have him here with us.  After Billy left, we packed up and went to Chicora to spend the day with my parents, sisters and their families. It was another great day.  In fact, my parents surprised me with a new laptop, which I am typing on right now.  Our desktop computer and our laptop have both kicked the bucket, so it was a much needed gift.  My parents bought the girls matching Frozen couches, and they made the boys fort/ toy boxes with a giant tent that attaches to them.  Celtan has had a lot of fun with the tent part!  The toy box isn't quite finished, but we did bring the tent home.  The tent right now is attached to my curtain rod in the living room, and spreads out over our living room.  He is in his glory.  There is something about a boy and his tent. 

On Saturday, we had Christmas at the Kepple's.  It was a fun night.  I wrote my beloved cousins and sisters a letter, and I gave them all an item that once belonged to our Great-Grandma Wolford.  I've held onto these items for years, and I wanted to distribute them to all of the cousins. That way, we could all share a memory of her.  Celtan and Elizabeth were dressed up in their Christmas best. I was able to get a few pictures of them all dressed up. 

Right now, we are resting up and enjoying our time off together.  Celtan is playing with all of his toys.  Elizabeth is still recovering from the virus that struck her early last week.  She is getting better, but she still has a nasty cough.  This virus that is going around is not pleasant and so many people seem to have it.  Elizabeth will occasionally show interest in one of her toys.  We will continue to help her become interested in them.. haha! Plus, let's be honest, I like playing with all of the princess stuff.  ;-)

 Elizabeth pulled herself to a standing position in therapy the other day.  She is still very wobbly when she stands, and it will be a long time before she can stand independently without support, but watching her do that brought tears to my eyes.  She is making some gross motor progress lately, and it is great to watch her do these things. 

I would like to thank everyone that made our Christmas so special.  To all of our family and friends, we love you and cherish you more than you could imagine.  So many people have sent us lovely cards, dropped off items to us, and we have gotten a few donations for "Elizabeth's traveling fund."  Our secret angel sent us another card.  I have no clue who this person is, but we appreciate their generosity and thinking of us very much.  To all of you who have sent us food, money, gifts for the kids we are totally overwhelmed by your generosity.  I am trying to keep up on Thank you notes, but I feel as if I am forgetting someone.  We are so blessed to have such loving, caring and generous people in our lives. The gifts, love, prayers and support have helped us tremendously on this journey.  We are truly surrounded and wrapped in arms of love.  I reflected a lot over the holiday about how I have been gifted with a legacy of love from my family, and I have been given the same thing from all of you.  Thank you for being there for us. Thank you for being our brightest stars in a sky that sometimes seems very dim.  Thank you for all that you do, have given, and continue to give to us.  We sincerely love and appreciate you, and we hope that one day we may return the countless favors that you have extended to us.

We hope that you all had a very Merry Christmas, and we wish you the most blessed and beautiful New Year!  Here are a few pictures of our Christmas: 



Family, New Beginnings and Other Updates

Family, New Beginnings, and Other Updates

Every year, my Kepple family has a cookie baking day right before Christmas.  It is a fun day.  My Grandma Kepple, Aunt Nancy (Bard), my mom, Aunt Debbie, sisters and cousins get together and make dozens and dozens of cookies.  We take cookies to neighbors, family, the local Veteran's center, and we also save some for our family Christmas gatherings.  It's great to spend the time together, and I look forward to it every year.  I always wear my Great-Grandmother's Christmas apron.  Celtan and my Pap Kepple were our number one taste-testers.  Celtan and my nephew Mason also expertly decorated some of our sugar and gingerbread cookies. 

We left the baking festivities around lunchtime.  Celtan had karate, and after that we were taking a family trip to Erie.  Jason's brother and his wife, Eric and Sandy, had their long awaited twins on Friday, December 19th.  We were so thrilled for their arrival, and so we made the trip up to Erie to see them.  We were able to go into the NICU to see the babies.  They are precious little Christmas miracles, and we welcome them with love into our family. 

In the NICU, I was flooded with flashbacks and memories of my time spent at Magee's NICU with Elizabeth. As a parent, a preemie in the NICU can be a scary experience. It certainly was at times for us.  However, when you are blessed with a preemie, you get to see and experience things that many other parents never get the chance to.  You get to see them grow, overcome, and develop in ways that largely take place unseen in the womb with full term babies.  Plus, there is something special about babies that you fight so hard just to get them here, keep them here.  I'm happy to report that my new niece and nephew, Livvy Jeanne and Major Vaughn, are doing well.  They will be in the NICU for a few weeks, but they are doing very well.  Eric and Sandy will be amazing parents, they are amazing people, and Livvy and Major couldn't have been blessed with better parents.  We love them all, and if you are praying for us, then please add them to your prayer list.  They are much awaited miracles of life, and they have a lifetime of being cherished ahead of them.

Celtan really enjoyed the NICU waiting room.  He stayed there with Elizabeth and Uncle Eric while we were visiting, as he was too young to go back and see his new cousins.  I don't often mention Celtan in the blog, but he is such an awesome kid.  He is super into Santa this year, and he took the letter that his elf delivered to him from Santa.  He had to show everybody the letter.  I've included some pictures of him from our visit to Erie. 

Celtan was in the Christmas Play at church on Sunday.  As I am bustling around getting ready for the holiday season, the message and innocence of the children in the play was refreshing.  They all did a great job.  Celtan also was over the moon with excitement over getting to see Santa at my Grandma Kepple's. He made sure to give Santa a cookie before he left.

We had both kids to the doctor yesterday.  They both have a virus, runny noses and coughs.  They seemed much better this morning, and so we are hoping it will be gone soon.  It's always something!  I hate it when they are sick. 

On other note, I have been searching far and wide for specialists that can give us some insight into Elizabeth's brain MRI findings.  So far, I have had success.  She was accepted, and we are in the enrollment process, for a research study at UC San Francisco at Dr. Elliott Sherr's research lab.  This study is looking closely at the brains and genetic factors at work in individuals with Corpus Callosum anomalies.  Right now, our participation is going to be done remotely. I would like to try to get out there this summer and take her to the lab for additional insight and testing, but that will be only possible if we have the funds to do so. 

I also have found a specialist at Boston Children's Hospital in PVL (Periventricular Leukomalacia) and CVI (Cerebral Vision Impairment). Her name is Dr. Janet Soul. We have an appointment with her in Boston in June.  So, we will be making a little trip to take Elizabeth to see her and hopefully gain some insight. 



Video EEG

Video EEG

We were admitted on December 16th for an overnight Video EEG.  Dr. Amy Goldstein ordered this test as part of her evaluation of Elizabeth.  Elizabeth had a routine EEG done in October, which was normal.  However, she slept through the entire test. Since she does have staring episodes, and she has several different findings on her brain MRI that would make seizures likely, we decided to have the overnight Video EEG to try and catch one of the staring episodes. 

We were admitted in the afternoon on the 16th, and they took us to our room in the EEG unit on the 6th floor.  We met her nurses, and the technician hooked her up to the leads.  She did not like this!  The leads do not hurt to have put on, but they use Medical Air to dry them on, which smells, and they are heavy.  The weight of the leads, plus all of the wires, made it difficult for her to hold her head up, especially with her low muscle tone.  They wrapped her head in gauze, and they made her a pony tail of wires wrapped in gauze.  The nurses brought in a play mat for her, and I spread out her toys.  We were trying to make her as comfortable as possible. 

Mom, Elizabeth and I watched Frozen 3 or 4 times.  She really likes that movie.  She kicks her legs whenever Elsa sings "Let it Go."  We also ordered her some food, played on the mat with her, rocked her, sang her songs.  It was hard for us to watch her struggle to hold her head up with all of the wires.  Elizabeth did not nap much that day, so in the early evening we laid her down for a nap. She did not care for her crib that was encased in clear plastic glass.  She rocked herself to the point where she toppled over in her crib and literally crashed to sleep.  It was hard for us to watch her do that.  She did not want held or rocked, but she needed to sleep. 

We had a visit from Shiloh the therapy dog.  He was on her floor, and Elizabeth really liked him.  She touched his fur, petted him, and we got a few pictures.  She is learning the sign for dog in Speech Therapy, but I could not get her to make the sign. 

That night, Elizabeth slept restlessly.  She was trying to avoid sleep and get the leads off of her head.  So, she kept banging her head off of the sides of her crib, and then she would rub her head off of the mattress.  We had to call the nurses in a few times to rewrap her head.  They eventually put a chin strap on her. 

They gave Elizabeth a leopard while on the EEG unit.  She had received a stuffed dog while leaving Genetics.  We took the dog home and gave it to Celtan.  Elizabeth kept the leopard.  She really likes them both, because they squeak when you squeeze them.  The animals were donated by PETCO.  The staff at CHP were passing them out to the kids that day.  The items that are donated for the children at CHP are really great.  Elizabeth really enjoyed both animals, and it did help to pass some of the time.  Celtan really loved his dog, too.

They discharged us on Wednesday, December 17th around 11 a.m.  Elizabeth was glad to get unwrapped, and they put a bunch of conditioner in her hair to help get the glue from the leads out.  We took a "jail break" picture of her and her leopard.  It was a long night watching her struggle with her head wrapped like that, and mom an I got very little sleep.  As we were leaving, we were treated to another awesome surprise.  Eat N Park was stationed in the lobby handing out free parking passes.  So, we traded our discounted parking pass in for a free one.  Happy Day!  We were grateful for the free parking.  They gave us a ticket that was reduced to $5 for the 24 hours that we were there, which was nice.  The free parking was much better.  Thank you to Eat N Park for the much appreciated free parking for the day! 

Dr. Goldstein's office called on Thursday the 18th to tell me that the Video EEG was normal and reported no seizure activity.  This was wonderful news.  However, they also noted that she did not have any staring episodes, so they may be repeating the test in the future.  So, when we repeat that, and if we need to repeat it, is yet to be determined. 

We have a nice break from appointments for a few weeks.  Elizabeth returns to Dr. Herzig, her Opthamologist, in  Wexford on New  Year's Eve.  That also happens to be my birthday, so maybe we will make a special girls day out of it.  Then, our next appointment isn't until January 9th when we see Hematology and Dr. Jabbour at CHP. So, we plan for lots of relaxing and cuddling over the holidays!

Genetics

Genetics

On Tuesday, December 16th, Mom and I took Elizabeth down to Children's Hospital.  We were scheduled for an appointment with Genetics, Hematology and then to be admitted for an overnight Video EEG. It's amazing how time can go so slow and yet so fast at the same time.  It seems not so long ago that we were told it would be March until we could get into Genetics, and they shortly thereafter they called and said that the powers that be wanted her appointment moved up. So, they moved her appointment to December.  Although, I'm grateful for the appointment being moved up I was filled with bittersweet emotions.  Genetics is a tough department to get into quickly, and I know from conversations with other parents, doctors, and my own research that they don't move appointments up unless they feel that there is a need to do so.  The December date came upon us, and our time for answers drew near.  It was one step closer for us for answers for Elizabeth.  Sometimes, even though wait times are shortened, I still feel as if I am in a tunnel where time stands still.

At Genetics, we met with a Genetic Counselor, a Fellow and a Medical Student who was visiting and observing in Genetics that day.  We extensively reviewed Elizabeth's medical history, symptoms, features, and our family tree.  They examined her, we discussed testing procedures, etc.  Then, they reviewed their notes with Dr. Areeg El-Gharbawy.  I have heard wonderful things about her from my friend, Sara Stewart, so I was excited that she was going to be the doctor from Genetics on Elizabeth's team.  We waited and played with Elizabeth. 

Dr. El-Gharbawy came into the room.  She reviewed some of the things that we had discussed with her other team members.  She started off by saying that she was going to be dictating a list of features and measurements of Elizabeth's that stood out to her as significant, and she wanted us to not be offended by it.  I expected that to happen, but I can only imagine how someone may take this part of the appointment negatively if they were not expecting this to happen.  Dr. El-Gharbawy dictated several features and measurements of note while the fellow marked her observations down on a sheet of paper. 

While listening to Elizabeth's heart, she heard a heart murmur. We have never been told that she has one before, and Dr. El-Gharbawy felt that it was a type of murmur called a "Flow Murmur."  This is an innocent heart murmur that can come and go.  It can be brought on by a variety of things, and her anemia may be the culprit in this case.  The murmur could be caused by her anemia, and so she felt it was important to see Hematology. 

Dr. El-Gharbawy also noted that Elizabeth not only has hyptonia, which means that she has low muscle tone, but that she also has hypermobility in her joints.  This means that Elizabeth's joints are very flexible.  She could bend Elizabeth's limbs and fingers in ways that made me hurt just watching her, but Elizabeth was not bothered by it at all.  She asked if I could bend my thumb to my wrist, and I said no.  So, the doctor tried to bend my thumb to my wrist. I was worried for a few minutes that she might break my thumb, but she quickly saw that I do not have hypermobility in my joints.  She asked if Jason had hypermobility in his joints, and I answered her with a resounding "no." Dr. El-Gharbawy explained that Elizabeth's hypermobility in her joints and hypotonia in her muscles is a combination of symptoms that makes it very difficult for her to perform activities that require movement.  She told us that essentially it makes Elizabeth a big rubber band, which is one reason why she is so slow to develop gross motor milestones. 

Dr. El-Gharbawy also mentioned that the good news was that she didn't look at Elizabeth and immediately say, " Yes, she has this," based on a distinct facial feature.  However, the not-so-great news is that Elizabeth has a variety of features that are common in different genetic syndromes and disorders.  She also mentioned that many of Elizabeth's features speak to a set of disorders known as "Connective Tissue Diseases."  Since Elizabeth presents such a broad range of symptoms and features, a set of genetic testing called a "Microarray" test would be the best starting point.  Then, depending on what that tells us, she may need to have another type of testing done. 

Unfortunately, this is where we are at a standstill.  The insurance company has denied this first level of testing.  It was actually ordered by Dr. Safier (one of her Neurologists) in October.  We had it drawn by the lab, and we were then informed that the insurance company was denying the test because they did not feel that it was medically necessary.  They also denied a slew of other testing that was done on the same day.  I won the appeal that I filed on the first set of other labs that they denied, but they appeal on the first level of genetic testing is still under review.  There are several doctors at Children's that have written letters on Elizabeth's behalf to the insurance company explaining why the genetic testing is medically necessary for her.  Dr. El-Gharbawy explained that this is not uncommon, because many insurance companies still feel that genetic testing is experimental.  She is also going to be sending a letter to the insurance company as part of the appeal.  Right now, Elizabeth's DNA is sitting in a lab waiting for the green light to go ahead and run the test.  I call the insurance company pretty much every day.  If this first appeal fails, there are two other levels of appeals that I can and will be filing. The way I look at it, they will either get tired of hearing from me or tired of me appealing, and eventually they will give in.  We will win this battle.  If for some reason we don't and the insurance still refuses to cover it, then we will find some way to pay for it ourselves.  Even if we have to sell our house and live in a tent.  (Just kidding.)  I think you get the point, though, that I'm not going to give up on this either. I do believe that with the amount of support from her doctor's at CHP, as well as my persistence, that they will see it our way.  It just may take some time.

We thanked Dr. El-Gharbawy.  She was very informative and thorough.  I checked the time and realized that it was 11:30.  We had been in Genetics for over three hours.  We were supposed to see Hematology at 10:00 a.m. that morning. So, we raced to get to Hematology.  We ended up having to reschedule with Hematology, because they did not have any appointments left that day or the next day.  So, we will be seeing Hematology on January 9th before her post-surgery follow-up with Dr. Jabbour.  Hematology will be weighing in on her anemia, which we know for certain is not related to an iron deficiency.  We know this for sure thanks to the blood work that was ordered by Dr. Amy Goldstein to further analyze her anemia and iron saturation.  Oh, yeah, this is part of the same blood work that I appealed that the insurance company did not feel was medically necessary.  Team Elizabeth Jeanne 1-- Insurance Company 0. 



Post Surgery Recovery

Post Surgery Recovery

We came home from the hospital on Wednesday, December 3rd.  Elizabeth was very sleepy and slept most of the night and evening.  She is always very drowsy for a few days with any procedure that uses anesthesia, so this was normal for her. 

On Thursday, she seemed to be much better.  She wanted to jump in her Jumperoo.  She also played with her favorite toys, laughed at her brother, and took some extra naps.  She was slowly eating foods with more ease.  I did notice occasionally her wincing when she was swallowing.  The doctors said that swallowing difficulty and some pain with swallowing were normal considering the type of surgery and procedures that were done on her.  So, I continued to give her Motrin and Tylenol as prescribed by her doctors.  Elizabeth tolerated foods and pain well on the medications. 

Friday came and Elizabeth was not herself.  She was very fussy and she seemed to be in a lot of pain.  She was not eating as well as she had done the day before.  She was very restless and fussy and seemed to be running a slight fever.  I continued the doses of Tylenol and Motrin.  I also called the ENT to ask if this was normal, or if there was anything else that we could or should be doing.  They felt that the increase in fussiness was likely not due to her surgery, and they recommended that she see her Pediatrician.  They felt that maybe she had picked up a virus that was complicating her already sore throat.  The pediatrician's office did not have any appointments, so we just watched her closely to make sure that we were not going to need to make a run to the ER.  Around lunch time on Friday, she took a huge nap.  When she woke up, I could tell that she was feeling much better.  I was very relived to see that, and it did alleviate some of my worry. 

We were blessed with a gift on Friday from a family that has become near and dear to our ours throughout this journey with Elizabeth.  Jason grew up and was friends with many people in this family, and one of the family members is a very special part of Elizabeth's EI team.   I was overwhelmed and was very gracious for this lovely surprise.  The gift was greatly appreciated, but they mentioned that they were praying and thinking of us.  Their kindness, support and generosity really meant a lot to us. 

We also had a visit from our Pastor (Joe Boomhower) on Friday.  He sat and visited with us for a few hours, and Celtan shared some of our freshly baked cookies with him.  Pastor Joe has been such an enormous source of support for us on our journey with Elizabeth.  From the very beginning, he was praying over me, for us, and has visited us to check in.  We are eternally grateful for his love, prayers, guidance and support.

On Monday, after a good look in her mouth and a conversation with her OT, I discovered the culprit behind the increase in pain.  Elizabeth decided to cut 4 molars at the same time.  As if the pain from her surgery was not enough, I'm certain that the pain from cutting all 4 molars at once was simply awful.  We continued with the Tylenol and Motrin.  She seemed to do well, and we were able to discontinue the medicines later in the week. 

We have seen some improvement in her swallowing.  She has been choking less when drinking, which is a good sign.  We have noticed some more liquids coming out through her nose, but this may just be temporary until she is completely healed and learns how to swallow again.  The liquids coming out through her nose have to do with her Submucous Cleft Palate, so we will just continue to monitor how often that occurs during feeding. In the meantime, we are hoping to see continued improvement and progress as she recovers.  We return to see Dr. Jabbour for a post-surgery follow up on January 9th.

Project Linus

Project Linus

I mentioned Project Linus and their blanket making charity.  Elizabeth received one quilt and two fleece blankets during her 5 week stay in the NICU at Magee and one quilt during her brief stay at the PICU at CHP during her recent surgery recovery.  Here is a picture of the beautiful blankets on our dining room table.  I wanted to show off their lovely work.  Enjoy!  Oh, and, if you're looking for a worthy and much appreciate cause to donate to this holiday season, when we have our Elizabeth's Blessing materials drive for Project Linus, or anytime for that matter, I would highly recommend choosing Project Linus.  

Their website is:  www.projectlinus.org

Here is the info for the local chapter and their Coordinator, if interested in donating or more information.  Lois is great! I contacted her last year when we decided to start the Elizabeth's Blessing Project.  Her information is:

Lois Misko

Chapter Coordinator

253 Ranger Drive

Pittsburgh, PA 15236

412-207-8259

lois.misko@gmail.com

Here is the link to the local Project Linus Chapter's Facebook Page.  You can "Like" the page or visit it on Facebook for more information:

https://www.facebook.com/pages/Project-Linus-Allegheny-Butler-Washington-Westmoreland/147833318740791

Here is a great article from the Pittsburgh Post Gazette about their efforts.  Click on the link or copy and paste it into your web browser to read it:

http://www.post-gazette.com/local/north/2014/03/20/Project-Linus-blankets/stories/201403200011

There's No Place Like Home

There's No Place Like Home

Wednesday morning started early.  Elizabeth woke up when the nurses did their 4 AM rounds.  They checked her vitals, which were all good.  She was a little bit restless and fussy, so they also gave her a dose of Motrin.  Since her surgery, they had been alternating giving her Motrin and Tylenol to manage her pain.  She can't tell us, but her surgery and other procedures have made her throat very sore.  She sounds a little bit hoarse, which is also normal.  Since she usually isn't fussy, her fussiness indicates that she is doesn't feel great.  That's usually my number one indicator that something isn't right with Elizabeth.  She is usually so pleasant, and so fussiness is out of the ordinary for her.  

I watched as Elizabeth rolled around, snuggled up with her blanket, sucked on her binky, and cuddled with her Princess Sophia doll. She really loves that doll.  In fact, she had never really attached to any toy or object until a few months ago.  Then, she really started liking her Princess Sophia doll.  She hugs it, moves it around he fingers and hands, smiles at it, reaches for it.  It has been awesome to watch her develop this attachment to this toy.  As a parent of a "normal" and a special needs child, it is both interesting and heartbreaking to see how they develop, grow, etc. differently.  Regardless, you rejoice when your child achieves any kind of milestone or does something amazing.  Elizabeth has taught us patience, and that doing things at your own pace is perfectly normal.  We rejoice in whatever he achieves whenever she achieves it.  Over the past four years, we have watched Celtan attach to different toys, achieve different things, and the one lasting object of attachment has been his blue PSU football.  Elizabeth has played with toys, but she really has never shown such a strong liking to an object or toy before her Princess Sophia doll.  (Thanks to Aunt Sandy and Uncle Eric Hackwelder for buying it for her for Christmas last year!) I definitely rejoice in the fact that she loves this doll so much.  It's just a little thing, but it matters a lot. Here is a picture of her playing with it at home. 

I'd also like to mention another item that has meant a lot to us, and we were blessed once again by this great organization in the PICU.  When Elizabeth was in the NICU at Magee after she was born, she received 3 beautiful and colorful blankets during her 5 week stay from an Non-profit organization called Project Linus.  Project Linus is dedicated to making blankets and quilts for children in need, and we are blessed to have a local chapter that supplies blankets to many Pittsburgh hospitals and shelters for the children that they care for in these places.  In the NICU, it was so nice to see something warm and soft in Elizabeth's incubator bed, especially when she was hooked up to so many wires that she couldn't wear clothes.  It meant a lot to us to have these blankets, and the kids get to keep them.  Every time we use them it is a reminder of how blessed we are and how far we have come, but also it is a reminder about the goodness of others.  So, for Elizabeth's first birthday, we wanted to do,something to give back to the people who had given us so much and helped to keep Elizabeth alive and well in the NICU.  So, we created a project called "Elizabeth's Blessing," and we collected donations for Project Linus.  We intend to do this every year on her birthday.  This year, our families and our church family generously gave money and materials to Project Linus to help them make blankets for other kids in the area.  They operate solely on donations, so we felt that by collecting donations for them that it would help them out a lot.  They were very gracious, and I think a bit overwhelmed as I pulled up and had the entire back of my minivan full of donations to unload.  We were so happy with the turn out and hope that next year's collection of donations will be just as successful. Thank you again to everyone that donated to Elizabeth's Blessing for Project Linus. Anyway, in the PICU, they gave Elizabeth another Project Linus quilt for her bed. It is bright yellow and has a Dora the Explorer theme.  It brought back a lot of memories watching her snuggled up on yet another beautiful blanket from the wonderful people at Project Linus. 

As the morning progressed, the ENT fellow, the PICU team and her nurses continued to come in and check her.  They all agreed that she had done so remarkably well, even better than they had expected, and as long as she passed her swallow evaluation that she would be able to go home.  So, they put in an order for the speech team to come up to evaluate her swallowing.  Elizabeth's fussiness was reducing, she was showing a desire to eat, and when she was awake she was sitting up and playing in her crib.  These were all great signs.  On top of that, her breathing looked great during and after the surgery.  It was so great that she didn't need to use a CPAP machine, did not need extra oxygen and did not need extra inhalers besides her Flovent, which was incredible.  She sounds a little hoarse and chokes a little when she swallows, but that is to be expected with the type of surgery that she had done.  She will basically have to learn how to swallow again with the modifications made in her throat, and it may take a little time. Once again, she was amazing us with her resilience and strength.  I tell her all of the time that she is the toughest girl I know.  

The Speech Team came in around 10 AM.  They watched her eat applesauce and chocolate pudding with ease.  They also watched her drink milk, which didn't go super well.  They agreed that she could go home as long as we proceeded with caution regarding feeding her.  They said to take her feeding slow, to watch and monitor choking episodes, showed me some techniques to reduce her choking while drinking from a bottle, and gave us some other tips on what to watch and listen for.  This meant that she could go home!! 

Dr. Jabbour stopped in and also agreed to let her come home.  He said to call if the choking and feeding difficulty did not seem to be slowly getting any better. A nutritionist also stopped by, and she had samples sent up of Pediasure and EnsureClear.  They want us to try to supplement Elizabeth's diet with these enriched drinks to help with her weight concerns. 

They discharged us around noon.  I hugged her nurse, Athena, who Elizabeth also had when they brought her to the PICU. She was wonderful, and mom hugged and thanked her too. We packed up the car and headed home. Mom and I successfully navigated our way through the Wendy's and Dairy Queen drive-thru on the way home, which sounds simple enough but it has proved problematic for us in the past. :-) We were both beyond excited to be bringing her home.  I was still in amazement, as I was expecting to be there a little longer.  I'm not complaining though, because its better to be home!

We came home, fed Elizabeth, changed her diaper, and then let her jump for a little bit and play with her toys. By her behavior, you would never be able to tell that she has surgery the day before or that she was in discomfort at all.  Again, she really is a miracle, and she continues to amaze us.  

My mom cleaned my house, despite my requests for her to sit down, and she had arranged for my dad to bring in supper for us.  I cannot thank her enough for being by my side through all of this. It has really meant a lot to us, and she has been so helpful in more ways that I can even count. Mom, if you're reading this, I love you and cannot thank you enough. 

It was a quiet night here.  There is truly no place like home.  Thanks for all of the love, prayers and support.  It had been a tremendous help, and we appreciate it immensely!

Surgery Day

Surgery Day

On Monday afternoon, CHP called and told us to have Elizabeth down to the surgery center at 8 am on Tuesday.  So, I let our families know about the time.  I spent the rest of the day packing a few bags, because it was unclear exactly how long we would be staying, and trying to push back the increasingly mounting nervousness.  I refused to let it overwhelm me.  So, I popped some popcorn and watched some Christmas favorites on ABC Family.  It took my mind off of the impending surgery and also gave me a few much needed laughs.  Laughter is the best medicine after all, and how can you not laugh at Will Ferrell playing a giant elf in tights.   Celtan went to spend the night at Aunt Lori and Uncle Steve's, and he was very excited.  It was so nice to know that he would be taken care of and that we would not have to wake him up early to take him somewhere in the morning before we headed to CHP. He was also excited to be dropped off to Aunt Holly on Tuesday afternoon.  He didn't seem the least bit bothered by the coming events. 

On Tuesday morning, Jason and I picked up my mom and headed to the hospital.  We arrived and headed to the fourth floor.  We were quickly registered and taken back to pre-op.  We met with the anesthesiologist team, discussed surgery plans with Dr. Jabbour (the ENT performing the surgery), and then waited to be taken back to surgery.  Elizabeth was starting to get very restless.  She had not had any food since Monday evening, and it was nearing 10 am on Tuesday.  Jason, his dad, my mom and I all waited and passed Elizabeth around trying to soothe her.  She especially enjoyed playing with her Frozen Princess Elsa wand. 

The time finally came to take her back to surgery.  I held her as we walked down the hallway that branches off to the OR and the waiting room. It felt like we had a parade following her, and I was so glad that Jason's dad and my mom were able to be here with Jason and I for added support.  We all gave her a kiss, and then the nurse anesthetist wheeled her down to the OR in her crib.  Dr. Jabbour said the procedure would be 60-80 minutes.  As I walked away from Elizabeth as she was being wheeled off, I started to cry.  I mean, I've been very weepy lately. Hell, I cried on the way to the hospital a little bit when I was singing along to the Wilson Phillips song, "Hold On," while it was on the radio.  For me, nervousness is usually paired with tears.  It seems to be a natural combination of emotions for me.  Anyway, Jason, his dad, my mom and I headed to the Surgery waiting room.  

It probably was a little more than an hour later, but it seemed like an eternity to me, before Dr, Jabbour came to the waiting room to talk to us.  This was the third time that Elizabeth has been put under anesthesia, but no many how many procedures or surgeries it doesn't seem to get any easier.  It's hard to watch them get wheeled away from you, it's hard to wait to hear how things went, it's hard to wait to see them.  I talked with another parent in the waiting area who shared the same sentiments. It's hard as a parent to watch your child experience anything adverse, but in situations with special needs children it becomes a necessary part of your existence.  Whether it is surgery, treatments, appointments, fitting in, extra steps in the day, it is a tough but rewarding road. 

Dr. Jabbour is awesome.  You can tell that he is very knowledgeable and skilled when you talk to him. I am so glad that he is on Elizabeth's team.  He sat down with us and began to explain her procedures and surgery that he performed that day. He brought a sleeve of pictures to show us that he took while he was working on Elizabeth. Here is a list of what she had done, and Dr. Jabbour's findings.  

1.  She did have a Laryngeal Cleft, which he filled in with a special gel injection.  This will, hopefully, reduce her aspiration while feeding, because the laryngeal cleft was basically a direct shot of food and fluids into her lungs.  A laryngeal cleft is essentially a hole in your larynx.  

2.  He checked both of her ear tubes.  The left ear tube looked great, but the right ear tube was blocked.  So, he replaced her right ear tube. She has recently had ear infections in the right ear, so this should help the right ear to drain and prevent infection. 

3.  He also did a scope of her esophagus and voice box.  He took some biopsies of the esophagus because it was slightly inflamed. He said that it was not super alarming, but since there was inflammation he wanted to biopsy it. 

4.  He was able to perform a Supraglottoplasty to help her laryngomalacia.  Elizabeth has pharyngomalacia and larygnomalacia, which means that she has a floppy airway. This impacts her ability to breathe and swallow efficiently.  So, Dr. Jabbour made small incisions to the floppy tissue at the top of the larynx.  This should help her breathing and swallowing to be easier for Elizabeth. 

5.  Dr. Jabbour also found something unexpected during Elizabeth's procedures.  He found that she has a Laryngeal Web, which means that she has extra webbing in her larynx.  A normal larynx has about as much webbing as you have between your fingers, and it should look like a "V."  Elizabeth's Layrngeal Web is a significant size.  It can effect both breathing and speech, but right now Elizabeth is not showing signs that she is having negative effects from the Laryngeal Web.  So, Dr, Jabbour did not do anything about it at this time. In the future, it can be cut down and thinned out if it is causing problems for her.  However, this finding is one of many indicators that Elizabeth has that indicate that she may have Velocardiofacial Syndrome, which is better known as a 22q11 deletion disorder. So, he reinforced us bringing this up to genetics on our upcoming appointment. 

Dr. Jabbour said that we could keep the pictures.  We thanked him for his time and for his skilled work with Elizabeth.  Since she did have the Supraglottoplasty, she was going to be transferred to the PICU.  So, he gave us directions on how to get there.  He said that she would be admitted for at least 24 hours so they could closely monitor her breathing and swallowing. She did really well during the surgery, and she did not need to be put on a CPAP machine, which was great!  

We went up to the PICU and checked in. They gave us her welcome packet, and they allowed Jason and I to go and see her.  She was very sleepy. So, my mom came back to see her briefly. Then, Jason, his dad, my mom and I went down to meet my dad in the lobby.  Then, the five of us went to lunch.  It was important to let Elizabeth sleep off the anesthesia. We ate in the cafeteria, and Jason's dad left after lunch.  We were so glad that he was able to be here with us today. 

After lunch, Jason, my parents and I took turns coming back to see Elizabeth.  Only two people can visit her at a time.  She continued to wake up, and she was very fussy when she would wake up.  Her nurse, Athena, was great and she kept Elizabeth comfortable. Athena kept reinforcing the need for her to sleep, and she kept teasing my mom not to wake Elizabeth up.  My dad and Jason headed home in the early evening, and mom stayed with me at the hospital.  I was glad that she decided to stay. 

Shortly after my dad and Jason left, Elizabeth started to get awake. So, we put on Frozen for her to watch.  We watched it three times, even though she wasn't awake for all of it.  When she was awake, she would kick her legs when Elsa sang "Let It Go."  She ate a few teaspoons of applesauce and drank 8 oz of milk later in the evening. She was very cranky, and so we kept her comfortable by giving Tylenol and Motrin and just allowing her to sleep. Mom and I took a trip to the gift shop and to get some food.  We ran into an old friend from Karns City, Breanne Gray, who works at CHP.  She had stopped in to visit Elizabeth while we were out. We went back up to her room after we ate, and we met her nigh nurses, Chrissie and Sandra.  They made a big fuss over Elizabeth, and she enjoyed that!  She was still cranky so we gave her some more medicine and milk, and we laid her down for bed.  

Elizabeth, mom and I went to sleep.  I found myself watching her monitors instead of sleeping, and I remembered doing this in the NICU. It was a bittersweet memory, as I was reminded of both how scary that time was and  the joy of how far she has come since then. I had just fallen asleep when I started to hear Elizabeth moving around in her bed.  Then, a little bit later I woke up, because I could hear the nurses.  Elizabeth moved so much that she blew her IV.  They pulled it out, and the doctor in the PICU decided to not to put another one in since she was eating and drinking.  

I woke off and on throughout the night checking on her, watching monitors, listening to the sounds of the hospital.  Once again, Elizabeth has proven to be one tough miracle.  She has done remarkably well with everything that she had done today. The doctors and nurses agree, and if she does well in her swallow study then she will be able to go home sometime on Wednesday.  So, I finally rested well and was filled with hope.  

Thanksgiving: A Reflection on Blessings

Thanksgiving:  A Reflection on Blessings

I have always loved Thanksgiving. In fact, it is one of my most favorite holidays.  I would even go so far as to say that I like it better than Christmas.  Why?  Well, there is so much to be thankful for, and it is a whole day that is designated solely to honor and remember those blessings for which we give thanks.  I still maintain and encourage others to remember and give thanks every day, not just on Thanksgiving.  It's so important to remember that your life is full of blessing and promise, even if it may not seem that way.  Each day each smile shared, every breath taken is a precious and special gift that deserves thanks year round and not just on one day.  Well, at least that's my opinion. 

Anyway, I was reminded on numerous occasions during this Thanksgiving holiday just how blessed we are by the people who surround us.  Jason and I took the kids and loaded up the van early on Thanksgiving morning to set out for a much awaited day with family and friends. We started our morning at my parent's house, and the kids and I visited while Jason was at football. Then, we went to my Grandma Kepple's to celebrate with my Kepple family. After that, we packed up and headed to Grove City for Thanksgiving with the Hackwelder's.  It was a great day, and we really enjoyed our time spent with our families.  My sister Holly prayed a beautiful prayer at our Kepple Thanksgiving, and she asked God to guide Elizabeth's surgeons and doctors in her upcoming surgery. It was beautiful and brought tears to my eyes. 

Even though I was still in some pain and discomfort from my fall on the ice the previous Saturday, I was able to go out Black Friday Shopping.  This year, I had the privilege to go out shopping twice with my beautiful sister-in-law Nuria, and my also beautiful niece, Sadie, joined us on our trip to Grove City's Wal Mart. It was a lot of fun to spend time with them. Nuria and I even got to have a nice, quiet lunch where we were able to talk, laugh, and enjoy some time to ourselves.  I also snuck in some shopping with my Grandma Kepple and my Aunt Debbie, which I have been able to do on Black Friday for the past 16+ years. I love them both, and our time shopping together on this day is something that I look forward to and cherish every year. I did get all of my Christmas Shopping done, and I was very thankful for the medicine that the doctor prescribed to me for my aching back, ribs and tailbone.  Otherwise, I would have missed out on this shopping tradition.  I finished off Black Friday by going to my Grandma Kepple's and watching my sister and mom decorate her house.  (haha) Celtan helped to decorate the tree, which he enjoyed very much!  Elizabeth sat up and played at a little desk, and it was great to be able to see her do that. 

Saturday morning I was greeted by a lovely surprise when I went to get Elizabeth in her crib.  She was sitting up in her crib, and I could not believe it. I had never seen her do that before, and it was amazing to see her accomplish such a huge milestone.  However, I had no idea what other surprises were in store for Saturday.  My sister Holly picked me up around lunch time, and we headed to Chili's for lunch with my Kepple cousins. Each year my cousins and I sponsor local families in need and go shopping together to buy things for them.  The plan was to go for lunch and the go shopping.  First, let me say that my Kepple cousins have been some of my closest friends, and we share a special bond.  (Below is a VERY old picture of us!) We are like sisters, really.  My Kepple aunts and uncles also have been a huge part of my life, just like my Bly side of the family, and I am so grateful for the love and support that they have all given to me not only now, but throughout my life.  I grew up surrounded by a huge, loving family, and this has been one of my greatest blessings. This day, at lunch, my Kepple cousins overwhelmed me with a gift that reinforced the enormous blessing and support system they are in my life.  Let's just say that I was lured to lunch under false pretenses, and the gift that they gave to Jason and I is still overwhelming to me.  In fact, I sobbed at lunch, I cried all weekend, and I still get tears in my eyes just thinking about it.  The gift was on behalf of my Kepple side of the family, and although I have said thank you to them it will never be enough. When I got home, I was greeted with another surprise from a friend.  It was a lovely card with a gift card inside.  The kind words in the card meant so much to me.  We closed Saturday evening with the Bly Family Thanksgiving and a surprise birthday party for my Uncle Mike.  He was surprised, and it was a great way to end this day that was full of surprises. Sometimes, we are surprises by blessings.  Today was one of those days. I already knew that I was blessed, but today was a living, breathing, real example of the many blessings in my life. 

On Sunday, I attended Chicora's Light Up Night.  It was an awesome community event, and I was honored to have been asked to sing that night as part of the entertainment. I share the stage with my sister, Becca, and cousin, Hannah.  Each and every performing group that night displayed amazing talent.  Elizabeth stayed home with Jason, and I took Celtan with me to Light Up Night.  I could not have been more proud than when he stood in front of a huge crowd of people and sang Rudolph the Red Nosed Reindeer with us.  He also was very excited to see Santa. We had a great time.  I was reminded of what a wonderful community I am from and grew up in.  It was an honor to participate and to be there that evening.  I would like to thank everyone involved in putting the event together!

Sunday closed out with mounting anxiety for me about Elizabeth's upcoming surgery.  I knew she was in good hands, but I couldn't hold off the nervousness. I was also very sore,because I way over did it during the holiday break. However, I was all rewarded with many blessings and the precious gift of time spent with loved ones.