Joshua's Journeys #27- A Year in Review

This is the holiday letter that I sent to CHARGE families in our Christmas card exchange. I thought it summed up Joshua's year in a positive way. Joshua is doing so much from above that we cannot see, but know that his hand is in a lot of the joy we have, here is just a small example.

Season's Greetings!

2009 was a very bittersweet year for our family. Last Christmas we were overjoyed having Joshua (CHaRGE) and Joey home with us. Joshua smiled and laughed his biggest Christmas morning giving us the best gift of all.

January we took Josh and Joey's 6 month pictures, and celebrated with a half cake! Josh had a bronchoscopy to see if we could start weaning him from his trach. No luck at this point, but we were optimistic.

In February Josh received his hearing aids, which made him look so studious. Unfortunately Josh also had some sort of infection where he was admitted to the hospital. He was here for a fairly long stay, and in the beginning part of March we moved into the Ronald McDonald House to be closer to Josh at the hospital. Josh was discharged, but readmitted just a few days later. On March 14, Joshua earned his angel wings and went to heaven at just 8 1/2 months. We have been so blessed to have him in our lives and have learned more than we ever could have imagined about life, love, and this wonderful CHARGE family.

In April, we decided to continue Josh's memory and share his stories on our blog through "Joshua's Journeys." We recall memories, procedures, and many pictures of his life here on earth. Our neighbors got together and had a tree planted in the park behind our house for Joshua and a placard with his name. It didn't take Joshua long to whisper into God's ear...we found out early this month that we were going to be expecting another baby!

July was the celebration of his and his twin brother Joey's first birthday. We were delighted to have another CHARGE family help us celebrate (thanks Crystal and Eva!) and remember the life of Josh. Later in the month we attended our first CHARGE conference, an experience we will never, ever forget. It was so comforting and heartwarming to meet so many CHARGE families and hear their wonderful stories, and see how far they've come. We left the conference feeling like we had not lost Josh, but gained a whole new community of friends.

August 1 was our Inaugural Joshua Kurby Charge for CHARGE 5K, a 5K run/walk that we started in memory of Joshua, to raise funds for the CHARGE Syndrome Foundation, and to raise awareness in our community about CHARGE. The race was quite a success and we are excited to see the turnout this year!

In September Josh was remembered at Crystal's Bowling for CHARGErs fundraiser. She put together a beautiful picture montage to remember Joshua as well as another CHARGE chile that had passed, and to honor her beautiful daughter Eva. It was a fun day of bowling, raffles, food and drinks, and spending time with other CHARGE families. Another great event!

October we went back to CDH for their annual NICU party. Joey decorated a pumpkin for Josh, and we visited with many of the families that we met during Josh's 126 day NICU stay. We caught up with some of his therapists, nurses, and doctors, while still having time to eat, dance, and play in the bubbles!

Now we are anticipating the holiday magic, reliving many moments with Joshua, and awaiting the arrival of his little sister, Jillian Grace, due in December. We hope you have a blessed, healthy, and happy holiday season. We thank you for all that you share with us. Merry Christmas, and Happy New Year!
The Kurby Family:
Phil, Sandy, Joshua (8 1/2 month CHaRGE angel), Joey (17 month surviving twin), and expecting Jillian Grace--now here!

Jillian Grace

Just a quick post to let you know that Jillian Grace Kurby was born this morning at 8:24 a.m., weighing 7 pounds, 10 ounces, and length of 19.5 inches. She came out crying, and is doing very well, along with the rest of the family. We will be updating more later on!
Love,
The Kurby Family

Joshua's Journeys #26- The Christmas Gift

I received the absolute best, not to ever be topped Christmas gift from Phil and Joshua. Christmas morning I opened up a gift from Josh that means more to me than any tangible thing. Phil had taken 2 of Joshua's sweaters and had them made into a hat for me. This was no easy task for Phil, since I have Josh's things very organized and look at them often. He was wise not to take certain clothes, but chose just the right ones. He looked up many seamstresses in the area, out of area, and consulted an expert on the internet as well who was the one to help him with patterns and suggestions as to how to go about things. Phil had to find out where Josh's clothes were being kept and then get them in some order so I wouldn't know anything was missing. He had mentioned to me that he had a really great gift for me this year, and I couldn't even begin to imagine how true that was. From the day he received the hat he was trying so hard to wait for Christmas to give it to me. His efforts to get this hat made for me were above and beyond anything I could've imagined. He mentioned he was worried that I would be mad for ripping up some of Josh's clothes, but he wanted to make something useful and something that would keep me warm. He succeeded beyond words. The hat is the most perfect gift: it reminds me of Joshua all snuggled up with me, as I wear it out I am reminded of all the trips him and I did together bonding in many of waiting rooms, it keeps me warm thinking of his smile, his eyes, all the great memories with Joshua, and the love of a wonderful husband that makes all my dreams come true.

Sledding Birthday Party

January 4th is Auntie Christy's birthday, but we celebrated yesterday since baby Jillian arriving Wednesday and might be home for her first day or two on the 4th. Sorry Auntie, that we had to celebrate so early, but we were also celebrating the fact that you, Uncle Chris, Andrew, and Baby G made it back home safely from New York on Saturday after a long wait at the airport. While they were away we had quite the snow storm, so Joey put on his new snow suit from Nonna and Grandpa and we went by Auntie Christy's for a little "sledding" in the driveway. We headed back inside to warm up with some hot chocolate and celebrate Auntie Christy's birthday!

Merry Christmas!

Joey had a great Christmas. Christmas Eve was spent at Nonna and Grandpa's house along with Auntie Steph, Uncle Don, Uncle Kevin, Uncle Mikey, and Auntie Marie. After dinner and presents Joey put on his poker face and was up late having fun with everyone! You wouldn't have known that it was past his bed time, he was having so much fun playing cards and having a great time.


Christmas Day was celebrated waking up to see that Santa had eaten the cookies, and drank some milk that was left out for him. Joey actually took the leftover cookie and ate it as he walked around the family room looking at the gifts that Santa left. Grandma was over just before Joey woke up, so she was able to see his reaction too. After breakfast and playing with new toys we got dressed and headed to church, Assumption (the cemetery), and then back home for a nice dinner. It was another long day for Joey, but he did really well.

Continuing the Holiday Festiviites...

Again, here are a few different days of activities...
Sunday we were at a holiday gathering at our neighbors (see the Joshua's Journey in the previous post) where we had a surprise baby shower for Jillian, and were able to celebrate the season with great friends. Joey enjoyed playing with Nicole, and after really warming up to her did not want to leave her side. He kept grabbing her hand and walking her to see Dakota (their German Shepherd) and playing catch with her ball.


Saturday we had Christmas at Grandma's house since this year Auntie Christy, Uncle Chris, and Andrew are heading up to New York to see Uncle Chris' family. It was very fun night filled with an excellent dinner, great company, and holiday atmosphere. Joey and Andrew were excited about opening their first gifts, but then would rather play than open other gifts.


The highlights for Joey were getting a kitchen from Auntie Christy, Uncle Chris, and Andrew. He loves eating the plastic food, and pretending to prepare meals. He even tries to warm his sippy cup in the microwave! Grandma got Joey a fun play set that has 2 tunnels, a clubhouse, and a tent. We set it up for Joey and he loved it! He went right into the tunnel, and has been having a blast in the tent. Java has even taken an interest in the tent, but hasn't made it through the tunnel yet. Thanks for a memorable evening and of course way too many gifts!


On Friday we had another good snow, so we all bundled up to head outside and shovel. Joey did help a little bit, but was still more interested in getting his basketball out of the garage to throw around. After working in the front, we went into the backyard for Joey and Java to play together. Joey kept falling, having a hard time being mobile in the snow, but he enjoyed watching Java race around the yard and catch snowballs in her mouth.


Wednesday night will be the last night I teach a fitness class before Jillian is born! Yes, I still have been jumping around teaching classes. After being on bed rest with Josh and Joey for 13 weeks I wanted to keep doing as much as I could, and I never had any restrictions this whole pregnancy...so different from last time! I don't have any pictures, because it was another surprise, but my 5:30am class that I teach (AM Challenge) at the Park District also threw me a shower at 6:15 in the morning! They brought in juice, cookies, and a bunch of adorable outfits and an angel bear for Jillian. It was another big surprise. So thoughtful, and such a fun group of people. I will miss them the next 6 weeks while I am on leave, thank you!

Finally, we had to put in some pictures for Uncle Mikey...the biggest Sox fan we know! Joey is excited to see him on Christmas Eve so he wanted to put on his Sox outfit in anticipation.

Joshua's Journeys #25- Neighbors

When we moved to our house 4 1/2 years ago we didn't move into a neighborhood, we moved into an extended family. Our neighbors are some of the kindest, most caring people we have ever met and we are so blessed to live in such a small radius of these amazing people. The day we moved in we were greeted with banana bread, brownies, lasagna, and champagne from people that lived in the houses directly next to or across from us. We thought it was a nice gesture, but thought it would end up being a relationship we had growing up with our neighbors, just that- neighborly. Our neighbors are much more to us. They truly are an extended family.

We have celebrated Christmases, Easters, birthdays, Mom's night out, summer nights, and more together and they have been there for us through some of our best and worst of times. Tonight we got together for a holiday party, and after a while Linda asked Phil and I to sit on the ottoman and we were pleasantly surprised with a baby shower! It was so sweet and very unexpected. And it the first baby shower of mine that I attended! When I was pregnant with Josh and Joey I was put on bed rest and told by my doctors not to attend my shower because of the fragile state of the pregnancy. So I stayed home and put on a skirt to feel like I was a part of the shower, while Phil had to entertain the ladies on his own. I knew the shower was over when there was a knock on the door followed by my neighbors coming in to cheer me up and make me feel a part of the party. They also put together a magnificent basket of things for me to do, pamper, read, and pass the time with while on bed rest. They have always been there to offer help in any way. When Josh was in the NICU for 126 days, they never tired in asking how he was, offering babysitting for Joey, or just talking. After Joshua came home from the NICU they came over to celebrate his homecoming; holding him, meeting him, and accepting him. When Joshua passed, they rotated making meals for us and made sure we were doing okay. They had the tree planted in the park behind our house with the plaque for Josh so that we can look out our kitchen window and be comforted. They have never been afraid to mention his name. Even the kids paint pictures and talk about Josh which warms our hearts to no end.

Thinking about bringing Josh to his resting place brings back many, many powerful memories. One image that I will never get out of my head is one from the church when we were leaving. After the funeral mass, Phil, Joey and I had settled into the limo and were waiting for the procession to the cemetery to begin. Outside of the church, watching the cars line up were our neighbors standing silently. Seeing them all shoulder to shoulder lined up on the sidewalk portrayed so perfectly the strength, love and support that a family has for one of its members. Thank you for taking us as a part of your family.
(some pictures are of Joey)

Let the Celebrations Begin!

Sorry to be posting so late, last weekend started our holiday celebrations with friends and family. We were not as good as we could've been with taking pictures, we'll have to remember that as the festivities continue on the next week. On Saturday we celebrated Christmas with Uncle Paul, Auntie Katherine, Ben, Abbey, and Juliette. Juliette is already 4 months, I can not believe it! Joey and Abbey played well together. Unfortunately the only pictures I have are of Joey and Abbey playing with his gift- a blender which has become his new favorite toy!

Sunday morning we went to breakfast with Auntie Pam, Auntie Trisha, Auntie Christy, Andrew, and Grandma. Auntie Pam, Auntie Trisha, and Auntie Tiffany (who we missed that day) updated our holiday decorations with Jillian's name. Last year they made the cutest advent calendar of Santa with Joshua and Joseph's names on it, as well as a Santa plate and cup for milk and cookies. They added Jillian's name to complete and they look perfect, thank you! Joey had a fun time playing with Auntie Trish's lotion, pretending to put it on everyone's hands. I think he's seen mommy put on hand sanitizer a little too often. (During his diaper changes he reaches for the sanitizer and rubs his hands together.) That afternoon we went by Nonna and Grandpa's to celebrate Aunt Brooke's graduation from her PhD in psychology. Again we were negligent with the camera, but Joey had a fun time with everyone. Congrats Aunt Brooke.

Tuesday night was the night we headed to the mall to see Santa. Not sure how Joey would do, Andrew braved the bearded man first. He was pretty hesitant and was clinging to his mom pretty well, but at least they got a good picture out of it. Joey on the other hand did not do so well. The video is great, but we only got one picture from the ordeal. Waiting in line Joey was having fun looking at the lights and decorations. He even watched Andrew sit on Santa's lap and didn't seemed phased by it. After Andrew was off, Joey ran up to Santa, bypassed him and went straight to his bag to take a look inside. Mommy picked him up to plop in on Santa's lap, but Joey grabbed on with all his might, hands, feet, head, he was not letting go. He was screaming and crying the whole time. Mommy had to hold him and sit next to Santa. In order to unwind from the traumatic moment, Andrew and Joey played in the play area of the mall for a little while.

Joshua's Journeys #24- Always missing you...

I know many families and friendships that appear to have been broken up by a child with a disability or death. I say appear because it is very obvious when you are caring for a child with special needs, or grieving the loss of a child who your true friends and family are; those that don't go when the going gets tough, but are there no matter what. Thank you to those that have proven themselves our true friends and family, that support and love us, for we all have special needs. I come across a lot of poems, prose, blogs, letters, etc. on losing a child, special needs children, and so on. Each hit me in different ways, but I felt the need to post these today. In addition, I learned this morning of a 15 month CHARGEr that passed away on December 3, we are praying for the friends and family of this new angel to find some comfort and peace.

Chosen One
If before you were born, I could have gone to Heaven and saw all the beautiful souls, I still would have chosen you...
If God had told me "this soul will one day need extra care", I still would have chosen you...
If He had told me "that one day this soul may make my heart bleed", I still would have chosen you...
If He had told me "this soul would make me question the depth of my faith", I still would have chosen you...
If God had told me "this soul would make tears flow from my eyes that would overflow a river", I still would have chosen you..
If He had told me "our time spent together here on Earth could be short", I still would have chosen you...
If He had told me 'all that you know to be normal would drastically change", I still would have chosen you...
Of course, even though I would have chosen you, I know it was God who chose me for you...
Thank you God for allowing me to be your mommy!


A Letter from Above
Dear Mom and Dad,

I know this is a rough time for you. So I will be as gentle as I can be. First of all, thank you for so many tears, particularly those shared with another that you love. They are a gift to me, a precious tribute to your investment in me. As you do your mourning, do it at your pace only. Don't let anybody suggest that you do your grief work on their timetable. Do whatever it takes to face directly the reality of what has happened, even though you may need to pause frequently and yearn for my return. Do this with courage and my blessings.

Be with people who accept you as you are. Mention my name out loud, and if they don't make a hasty retreat, they're probably excellent candidates for friendship. If, by a remote possibility, you think that there is anything that you could have done for me and didn't, I forgive you, as my Lord does. Resentment does not abide here, only love. You know how people sometimes ask you how many children you have? Well, I'm still yours and you are still my parents. Always acknowledge that with tenderness, unless to do so would fall on insensitive ears or would be painful to you. I know how you feel inside. To be included as your child honors me. Read, even though your tears anoint the page. There is an immense library here and I have a card. In Henri Nowens' "Out of Solitude", he writes, "The friend who can be silent with us in a moment of despair and confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not healing, and face with us the reality of our powerlessness, that is a friend who cares." Mom and Dad, I don't know where you are spiritually now, but rest assured that our God is not gone. The still small voice you hear in your heart is His voice. The warmth that sometimes enfolds you is Him. The tears that tremble just beneath your heartbeat is Him. He is in you, as I am. I want you to know that I am O.K. I have sent you messages to ease your pain, they come in the form of flowers that bloom out of season, birds singing, voices and visions and sometimes through your friends and even strangers who volunteer as angels. Stay open but don't expect the overly dramatic. You will get what you need and it may be simply an internal peace. You are not crazy, you have been comforted. Please seek out people bereaved longer than you. They are tellers of truth, and if they have done their work, are an inspiration and a beacon of hope whose pain lessened dramatically. And one more wisdom before I close. There are still funny happenings in our world. It delights me to no end when I hear your spontaneous, uncontrolled laughter. That, too, will come in due time. Today, I light a candle for you. Joined with your candle, let their light shine above the darkness.
Affectionately,
Your Angel Child

Let It Snow, Let It Snow, Let It Snow!

We've had some snowflakes here and there, but today there was a good amount of snow on the ground so Joey bundled up, grabbed his new shovel (it was going to be a Christmas gift, but for the sake of chores we gave it to him early!), and headed out the door to help shovel! Last year Joey was not very interested in the snow at all, he just sat with Josh in his snowsuit and starred, then cried. This year was much different. First off, Joey loves his boots (thanks Andrew!) so a chance to wear them is always welcome. He was really interested in the shovel and helping do what Mommy was doing so he only complained when he dropped the shovel and couldn't quite pick it up with his mittens on. After a while he decided playing with his basketball was a bit more fun. After a mitten change and playing for a while in the snow, Joey took a little spill in the snow, lost his glove, and got a little wet so he was done for the day. We came in, changed into warm, dry clothes, had some milk, and it was naptime!

Joey's First Haircut

Joey finally got his first haircut yesterday (12/7/09)! Unlike Josh, Joey has always had pretty short, fine hair. Some pictures he even looked bald for a while. His brown hair from his baby days changed into more of a blonde color for now, and they were hanging over his ears, and he was getting some curls in the back that were getting longer and longer. So it was time for his first cut!

We were so lucky to have Linda cut Joey's hair. A friendly, more familiar face is always a good thing for a baby getting their haircut, and boy did she give him the royal treatment! She had so many new and exciting toys for Joey to play with, and even let him play while she cut his hair. He did really well because of her magic touch. Joey didn't even flinch when the razor came out. After the cut Linda took him to the mirror to check out the new 'do, and play with some of the other pampering and primping tools. Then it was back to being a boy...he headed upstairs for a cracker and to see Dakota (their German Shepherd that Joey still wanted to call Java). Joey looks like such a little boy now, without the baby curls. Thanks Linda for a great cut, and a fun time!

Joshua's Journeys #23 Snow Day

Last year, December 6 we had our first big snow. I made it a point to have Josh do everything other kids would be doing. Josh definitely had his share of being out in the elements since by this time we were out to at least 2 appointments most days, but it was snowing out for the first time since Josh and Joey were born so what else was there to do but to bundle them up and toss them in the snow for a little while! So that was exactly what we did! It was very short lived, Joey was crying more than Josh, but I think the brightness of the snow was more bothersome to them than the cold or wetness of the snow. They enjoyed watching Java play, but pretty much just sat there and watched.

Deck the Halls

We have been slowly putting up Christmas decorations, before Thanksgiving most decorations were up, but Sunday we finished putting up our Christmas tree. Joey was napping for the beginning part, but did help put the lights, garland, ornaments, and of course the star on the top of the tree. When he first woke up and saw the tree he kept pointing at it saying "Whoa!" He has been very gentle with the ornaments and lights so far. He has only grabbed one off that of course looked like a ball and threw it, but luckily it was an unbreakable ornament! He loves looking at the ornaments that are down at his level and every morning when he first walks in the room he still says "Whoa!" I think he likes it! Every night before he goes to bed he does the same thing I used to do when I was younger (ok, and still do every year) which is lay under the tree and stare at all of the lights. It is so fun to see the wonder in his eyes.

Joshua's Journeys #22- Rockin' Around the Christmas Tree

As we have been putting up Christmas decorations and listening to Christmas music I stop and smile each time I hear the song "Rockin' Around the Christmas Tree" the oldies version. Last year when we had both boys home we would often have dance parties in our kitchen. Daddy and I would take our turns with each of the boys dancing around, singing, and being goofs. We weren't sure initially of Josh's hearing, so it became important for me to play music and dance so he could feel the rhythm and the beat of the music. Once we found out he had profound hearing loss in both ears I was glad that we had already taken steps to allow him to feel vibrations, understand balance (or lack there of) with movement, and just enjoy family time. Some of our best memories are the five of us (Java was always there jumping around too) dancing in the kitchen together.

Happy Thanksgiving

Joey had a fun, family filled Thanksgiving. We went to Nonna and Grandpa's for Thanksgiving and celebrated with Uncle Chris and Aunt Brooke, along with their dogs Ruby and Ella (although Joey still called them Java), Auntie Steph, Uncle Don, Uncle Kevin, Uncle Mikey, Nonna, and Grandpa. Of course it was a yummy meal, and afterwards Joey played with everyone's piles of change as they played cards, taboo, and enjoyed each other's company. It was a very fun day.

On Friday, Uncle Chris and Aunt Brooke came over for our Christmas exchange since we won't be seeing them at Christmas. Joey enjoyed playing with them and had fun opening his gifts...a nice new warm coat and trucks- his favorite! Thank you Uncle Chris and Aunt Brooke, we hope you have a safe trip back. Can't wait to see you again in a couple of weeks!

Other Happenings

Last week Joey went to the library to decorate an ornament for the Christmas tree that our library will have at the Brookfield Zoo this season.


Over the weekend we had Uncle Paul, Auntie Katherine, Ben, Abbey, and Juliette over for a day of fun. We played, went to the Cosley zoo, and went for ice cream!


Before Uncle Mark, Auntie Miya, and Nathan came over on Sunday Joey and Daddy had to finish the kitchen by putting the door back on the hinges. Sorry we have no pictures of our get together, we are not as good with the camera as some think!

Joshua's Journeys #21 Thanksgiving

The day before Thanksgiving Joshua was discharged from the hospital. We were so thankful to have him home, but hesitant about taking him out for the holiday. Phil, not wanting to miss his mom's turkey dinner went for the family festivities while I stayed back with Josh and Joey. After only an hour or two I decided that both boys should have a happy holiday, surrounded by family and all the chaos that goes along with it. So I packed myself and both boys up and headed over to Nonna and Grandpa's house for dessert, games, and family fun. Everyone was surprised and excited to see us all there, and I was so glad that I decided not to sit back and let the day pass but let these little boys experience it all! Happy Thanksgiving!
(Sorry about the slideshow, they are old pictures and I need Phil to get them in our picasa album so just use the link below)
http://s395.photobucket.com/albums/pp36/pkurby1/Thanksgiving%202008/?albumview=slideshow

In response...

In response to a comment about being too nice about the neurosurgeon in the latest Joshua's Journey regarding his shunt revision, please see the post "Andy is Toast." It explains the frustration and lack of confidence to say the least for this particular doctor. Andy was the reason why Phil started calling all doctors by their first names (even though he went by Drew) after all we were to be a team, or if anything we were more in charge of Josh's care from this day forward. The doctor was very quick to leave the room instead of answering questions, and the worst part of the whole ordeal was that Phil was on a business trip the day that Josh was admitted and didn't get home until the next day. Poor Tina had come in to help with Josh's IV, Phil called me back from my incesant messages for him to call me, and I handed the phone over to Tina to spill the news. Hmmm...probably not the way to tell him we were at the hospital again, but with Tina's voice Phil knew exactly where we were. After his return it was no playing around but forcing the doctor to talk to us and explain all options for Josh. I guess I was a little nice in the last post, but Andy was definitely not a favorite of ours.

Joshua's Journeys # 20 Shunt Revision

Today is the day that we headed back to the hospital for a stay. Josh's shunt had been healing, and we were applying the ointment as we should. We were told about the expected granulation tissue, but saw something that didn't quite seem right. So a few days prior we brought Josh to the pediatrician to look at his shunt. He told us it was granulation tissue and it was fine. Today I got a shocker as I took Josh in for his regular routine shunt check. They saw the white area and said it didn't look right. After a few moments it was determined Josh would be admitted. We weren't exactly sure at the time what his stay would involve. As the day grew longer and longer more questions arose, and finally it was decided that Josh's shunt would have to be revised. There was not enough skin covering the shunt to heal over, so what we thought was white tissue was actually the shunt popping through. So surgery times two...one to extract the existing shunt (this is the time that we nicknamed him "Massive Head Wound Harry" after the SNL skit because Josh's poor head had two big slices in it). Josh had to lay still in bed for 3 days while the cerebral spinal fluid drained into a bag since the shunt wouldn't be working. And then a few days later a shunt was placed on the other side of his head. So now he really had crazy hair! Several haircuts in the first 4 months of life! We were worried not only about if we'd be home for Thanksgiving or not, but also about the progress Josh had been making. He was doing so well at home. He was comfortable in side lying positions, we were working on him sitting up, he loved being propped in a boppy and playing with his toys, and of course feeding by mouth. We were not allowed to do any of this with Josh when he was in the hospital because he had to lay still to keep the fluid going into the bag and not his noggin.

On the brighter side of things, Josh gave us many smiles as he showed off his skills of playing with a balloon for the first time. He had much better control and knew how to manipulate the balloon so well, a skill Joey didn't figure out for a few more months. Josh was always so patient and willing to show us how much the small things matter. It was difficult once again having Joey at home, and one of us with Josh. One of us would spend the night in the PICU, and one would spend the night at home with Joey. Joey came to visit during the daytime, but it was a hard week for everyone especially after finding our groove at home for the past 2 weeks. Josh was also visited by some of his favorite people from the NICU: Tina (who helped with the IV since Josh was such a hard stick with his tiny little veins), Bethany (who brought him a new snowman blanket), Amy, Carl, and Cathy to name a few. They all kept our spirits up and enjoyed Josh's company while he had to take it easy for a few days.

Joshua's Journeys #19 Homecoming!

"I can feel you breathe, I can feel your heartbeat faster. Take me home tonight! I don't want to let you go till you see the light! Take me home tonight! Listen honey iust like Ronnie sang: Be my little baby!" (Take Me Home Tonight, by Eddie Money)

Last year today was the best day of our lives. Josh was finally, after 126 days (but who was counting?), discharged from the NICU. Josh's homecoming was a pure joyous occasion. We couldn't wait to get him home. After a goodbye to Josh's favorite nurses, exchanging of gifts and well wishes, Phil played "Take Me Home Tonight" (yes, by Eddie Money) as we left the NICU. Tina, one of Josh's primaries, had tears in her eyes as she hugged us like her own kids, helped us all into the car and watched us drive away. We of course have kept in contact with her, Bethany, Amy, and a few other of Josh's favorite "NICU aunties."

Josh knew he was going somewhere special. After 126 days he saw his first ray of sunlight (although it really was a cloudy day), breathed his first breath of fresh, outside air, and had his first car ride. He was extremely content the whole way home, gazing out the window, not needing suctioning or assistance one bit. We continued playing his song the whole way home, and as we pulled into our driveway we saw our house decorated by his aunt and cousin. Josh first met Java, which Java knew there was another little one coming home since we would bring Josh's laundry home to be washed and Java would sniff, and play with some of his clothes before we'd wash them to learn his scent. Java was very protective of Josh, just as she was with Joey, but it seemed even more so with Josh. She would guard him and stay close by as much as she could. After his greeting with Java we brought Joshua up to his room to see what he thought. We got a special cookie cake delivered to us from our friends (they know Daddy loves his cookies!) welcoming Josh home. That evening we even got a visit from the local police department checking in on Josh to see how he was doing and to meet him in case there was ever an emergency, they would know a little bit about him. It was so wonderful to see Josh watching Java, playing with his brother on the floor, being held in someone's arms on our comfy couch, and having our family together under one roof for the first time that night.

All Soul's Day and Joshua's Journey's #18 Rooming In

All Soul's Day
In celebration of All Soul's Day we had a few masses to remember and pray for Josh and others who have passed. One at the cemetery, and one at our church. The remembrance mass at our church was nice in that they said Joshua's name and Phil received a candle lit from the Paschal candle, and then placed it on the steps by the baptismal fountain. It was a very moving ceremony, with a lot of songs and scriptures that we had for Joshua's funeral mass.

No one day is easier than another, Josh is in our hearts and our heads constantly. Thinking about the days getting shorter, colder, and darker earlier, we remember the warm days of summer. Here is one of the times we spent picnicking at Josh's marker.


The Lord is my shepherd, I shall not want. He makes me lie down in green pastures. He leads me beside still waters; He restores my soul. He leads me in paths of righteousness for His name's sake. Even though I walk through the valley of the shadow of death, I fear no evil; for You are with me; Your rod and Your staff, they comfort me. Surely goodness and mercy shall follow me all the days of my life; and I shall dwell in the house of the Lord forever. -Psalm 23

Joshua's Journeys #18- Rooming In
A year ago today we were put to the test of rooming in with Josh. We had been very involved with Josh's care from the beginning, so we had no problems in proving our competencies. The task was to spend the whole day with Josh outside of the NICU caring for him to prove we knew his care for when he was to be discharged. Some people thought it was a crazy idea for us to think about brining Joey with, since he would be a distraction, but I fought saying he will be at home with Josh and we would like to be a family. We were very confident in caring for Josh, and many of Josh's primaries knew that we would be fine. There has been a history of other parents not being able to do the care for their child. Josh would remain hooked up to the monitors that the NICU staff could see his O2 sats, heart rate, and respirations. We were allowed to take him off the monitors to bath him, if we called them to let them know that was what we were doing. If there was an emergency there were switches we could hit to have help sent in immediately. We did not need anyone to help us. We did great at taking care of all of Josh's needs, we got him playing with his brother again, a nice bath, and a photo shoot too! We had been so involved and consumed with Josh's care all along that we had no issues or questions. We had an extra crib for Joey so it was very much like it would be at home with twins. We proved ourselves above and beyond. A few more days and Josh would be discharged.

Happy Halloween!

Joey celebrated Halloween by dressing up as Purdue Pete...the mascot for Purdue. When Daddy is watching the games on Saturdays Joey will often stop what he's doing, grab his milk, and sit on Daddy's lap and watch the game. He really is a fan! We didn't make it out to a lot of houses, but he enjoyed himself a lot. Andrew seemed to really catch on to the whole "getting treats" idea and was really excited about it! I'm sure next year the two will be up and down the block faster than we can chase after them!


Other Fall Fun:
The day before Halloween Mommy took Joey out to Grandma's house where she was watching Andrew. We all went to the library for a Halloween adventure! Joey gave his pumpkin to Java thinking she needed it as a costume. Joey was dressed in Andrew's candy corn outfit from last year, and the hat and socks that our neighbors got him matched perfectly! Andrew loved the hat too, and keeps calling it his party hat! A few other pictures that I threw in here are of Joey playing in the leaves and enjoying all of the autumn colors and Joey playing "Mr. Fix It."

Joshua's Journeys #17- Halloween and Home Equipment

Happy Halloween! Last year in the NICU, Josh was all decked out in the Corduroy costume that Nurse Stephanie had made for him...ears and all! He sat in his stroller and I walked him around the NICU as we passed out candy to nurses, therapists, and anyone else we came across (old enough to eat candy of course!). Josh's Halloween treat bag was filled with candy and we put it on his bedside table after our walks for those to pick at throughout the day.
Mommy spent a good portion of the morning with Paul from the home equipment company we were going to be using when Josh was discharged. Since the anticipated day was coming soon (finally!), we had to learn the equipment that Josh would be needing at home. It is slightly different than that of the hospital. We had to make sure we had enough outlets and power to support the equipment as well as how to use, clean, and order equipment and supplies. Josh would be coming home with a stationary suction machine, portable suction machine, tube feeding pump, tube feeding bags, suction catheters, humidifier for his trach (trach collar), pulse oximeter (don't even start us on this one! Josh and pulse ox's don't go together!), lots and lots of tubing, extra motors, and other ancillary items (ambu bag, oxygen tank, etc.).

Back to Halloween, Josh was Corduroy for Halloween because it was one of his favorite books. We read it to him often, and he looked at the book from his crib. He even had Corduroy's Halloween book for the occasion! Josh was a very cute Corduroy.

Joshua's Journeys #16- The S Word

Oh shunt! Today is the anniversary of Josh's VP shunt surgery. This is not something that is part of CHARGE Syndrome, but nonetheless Joshua needed one. Joshua had hydrocephally, what one of the NICU docs described as "lightbulb shaped head." The shunt is a device placed in the head that helps take cerebral spinal fluid off of the brain. The fluid is reabsorbed by the body. Basically, there was a device put in Joshua's head which had a long tube that went down the side of his neck all the way towards his stomach where the fluid would then be reabsorbed by the body, taking the fluid off of his brain. The "VP" part of the shunt is ventriculo-peritoneal, meaning ventricles of the brain, to the peritoneum which is the belly. Sounds tricky, and it is. The shunt was what we felt was Josh's biggest challenge. We knew he and we could deal with all the aspects of CHARGE, but when you are messing with the brain it is very serious business. We were told that there would be the possibility of shunt revisions--in which he had--where they remove the shunt and then place it on the other side of the head because of infections. After all, the shunt is a foreign object to the body. The shunt is programmable in that you can adjust how quickly the fluid is being taken away. If you go too quickly that can be detrimental, as would leaving too much fluid on the brain. Measuring head circumferences every day became part of our routine. And once home, Josh had to go weekly to the neurosurgeon for checks, but more of that to come later.

At any rate, today was Joshua's first haircut. He actually was born with a good amount of hair, very blonde and very long and thick. Poor babe had to have his head shaved where the shunt was going to be placed. So nurse Tina did the honor of cutting some hair and made a cute card for us as a first haircut keepsake. The neurosurgeon was our least favorite person involved with Joshua's care, and it was a shame because we would have to become very involved with him due to the complicated issues that can arise from shunts. Again, more of our frustrations later, but if you remember the post "Andy is Toast" we were not happy with him on many occasions. Unfortunately I do not have many positive words to say about shunts, hearing the word "shunt" makes my stomach turn because of all the issues that can go along with it. Joshua's crazy shaved hair allowed the opportunity for him to sport some really cute hats. It took some getting used to, there were many times we'd look at him and he'd be kicking his legs because he managed to yank his hat over his eyes. This happened a lot of times after he was discharged and would be driving him to and from appointments. I'd look in the rearview mirror, hearing him in need of suctioning, and he'd be crying from his hat being over his eyes. It was frustrating to have to stop to suction and stop to move his hat, but he needed the hat on to keep the gauze over his wounds after the surgery. Regardless, Josh looked so cute in all of his hats. And I still think that with the hat on (so his head wasn't shaped like a light bulb) Josh looks so much like Auntie Christy!

Recooperating from surgery:


Josh and his many hats:

Pumpkins, Football, and NICU Reunion Party!

Pumpkins
Friday night we went out between raindrops to Sonny Acres to get our pumpkins. Last year Joey was there as well, but he slept the whole time. This year he was a lot more interested in the pumpkins, decorations, and animals. It was a little on the chilly side, so we weren't there long. Uncle Chris, Auntie Christy, Andrew, and Grandma were there too. Since we still don't have counter tops and a sink at our house, Auntie Christy invited us all over to carve our pumpkins together. Grandma ensured we had enough energy with taffy apples and candy, while Auntie Christy washed and cooked the pumpkin seeds. Joey enjoyed watching Daddy carve his pumpkin, and tried to help Grandma with hers.


Purdue wins again!
On Saturday Joey, Daddy, and Grandpa watched the Purdue vs. Illinois football game. Daddy rooting for the Boilermakers and Grandpa the Fighting Illini made it a fun afternoon. Joey enjoyed the snacks more than the game, but hung out with the guys nonetheless. Daddy was very happy that Purdue won! Thank goodness since Joey is revving up to be Purdue Pete for Halloween next weekend!


NICU Reunion Party
Sunday was the CDH Halloween NICU Reunion Party. All of the graduates from the NICU, nurses, doctors, and therapists got together for the big bash. It was so nice seeing so many people again. The NICU is definitely a family to us. They have seen us at our weakest and strongest moments and have done so much more than medical care. We have made some lifelong friends and definite memories that will forever be in our hearts. It was great to see other parents and kids that were in the NICU for an extended amount of time like Joshua. We caught up on their children's progress and they were able to see Joey again (some barely remembered him being there), and informed them of Joshua's passing. They all remembered Josh and his uplifting spirit. We spoke with some of the doctors, some of the nurses we don't usually see (it was so nice seeing Stephanie and Theresa!), and of course saw our favorites (Bethany and Tina). We missed Amy and Cathy (ST), but will catch up soon. There was so much going on and everyone was having fun. Joey got a t-shirt, a pumpkin to decorate, a family picture, there was a percussion band playing (nurse Jan rocks!) with bubble machines, face painting, cookie decorating, coloring, food, drinks, and more! It really was a great afternoon, and we could feel Josh beaming from above (may explain why we finally had a mild, sunny day!).

I'm a Godmother Again!

October 18 I was so blessed and honored to be the Godmother of Juliette Kathleen (my first Goddaughter!). She is such a precious, sweet girl who behaved so well during the baptism. I am so proud and excited to be her Godmother. The baptism was followed by a very fun party where Joey was able to flirt and play with Abbey (Juliette's sister)as well as many other kids. Joey was a little outspoken in church, especially when he saw me stand up, but Daddy kept him from too many outbursts! Juliette slept peacefully through most of the ceremony and even gave a little smile from time to time. She was by far the best mannered baby there, and it goes without saying the prettiest too!

October 10 and 11

Another big change in our house right now is that our kitchen is being completely redone. New floors, cabinets, counter tops, sink, fridge, lights... It has been a bit messy, and a bit frustrating not having the accommodations of a kitchen, but also exciting watching it all come together. The weekend of October 10 and 11 we primed and painted the walls of the kitchen and utility room to prepare for the cabinet installation. It was a busy weekend, and I'd love to show the transformation, however we are still waiting another 10 days for the counter tops and sink to be installed, and Phil wants to wait until it is all complete to show the whole change.

Marathon Morning- October 11
It has been a very long time since I have been able to run a marathon! The last time I actually ran a marathon was up until the last few weeks before getting pregnant with the twins. I was determined to get in a marathon to make my goal of running 8 (my favorite number) marathons before having kids. So I trained and ran in the "Second Floor/OK Go Marathon". The marathon was run on the second floor of my house on the treadmill. The OK Go part came into play because at the time the song OK Go was popular and the video of the song was of a few guys doing a intricate routine to the song on treadmills. It was a little monotonous to say the least, but I had good music, and at times especially near the end great company. Christy and Andrew made signs just like they were downtown cheering me on, my mom rang the obnoxiously loud cow bell, and Phil made sure the playlist was good. I can not wait to run another marathon, so watch out for next year!

In the meantime I decided to volunteer at the Chicago marathon, helping with the start corral. 3 years ago when I was unable to run I volunteered at the marathon as an "Ask Me" person. So this year was a different job. Waking up at 4am to get downtown was not as bad as it seemed. Partly because this little girl likes to wake me up between 3-5am every morning lately, and partly because I think I've been trained to not need as much sleep anymore. At any rate, I bundled up and went downtown to help out and cheer on 40,0000 strangers. When I got to the volunteer compound I was put in a group of extra people. The leader was ready to stick me with the elite runners, until another couple spoke up and said they needed to get out early to do some finish line volunteering as well. So close to seeing the elite up close, but instead I was shifted to the very end of the corrals-6 hour plus runners. It was nice to see their enthusiasm and dedication as they lined up for so many different reasons, so proud of how far they've come and what they were about to accomplish. It was pretty frigid, but a good morning overall. (After getting back home it was back to painting in the kitchen!)

Joshua's Journeys #15: To Everything Turn, Turn, Turn

Sorry it has been so long since we've updated. A lot of changes have been happening, some easier to deal with than others. Going back to the beginning of the month, October 3 and 4 Phil and I spent the weekend in Josh's room. There really are no words to explain what was happening in our house that weekend. Joey had a great time being shipped off to Nonna and Grandpa's house (thank you!) while we were busy working in Josh's room, cleaning it out, painting, looking through medical supplies, retracing steps and memories. Change is inevitable. We knew we would have to get into his room and sort through things and turn it into a little girl's room. It had been nice keeping everything as it was. We could walk in and grab a suction catheter, a stuffed animal, or look at the tapestry that Josh would smile at every morning and let ourselves believe for a few moments that he is still here. Joey even enjoyed playing in his room. We have kept quite a bit, but have a lot to donate to other CHARGE families and Easter Seals. Change is never easy, but this was near unbearable. There are no words to explain the thoughts or feelings we have every minute of every day about Joshua. I just wanted to post some pictures of our beautiful first born baby. We miss you more than words.



And here is the room somewhat redone. We haven't taken pictures of the room with all of the furniture, but you get the idea...

Bark in the Park

Saturday we took some time to give a lot of attention to our first baby girl- Java. Java has been through the thick and thin of things around here and has been very adaptable. Whether it was our neighbors coming over to get her and spend the night by them, going long days without getting let out because we were at the hospital all day, comforting us when we most needed it, or giving Joey a good lickin' just to make us laugh, Java has been there for us unconditionally. So on Saturday we were able to bring her to the Carol Stream Bark District's Dog Festival.

It was a fun day filled with so much for dogs to do. Armstrong Park was turned into a dog's dream. There were many different vendors of pet foods, trainers, photographers, and much more. The sand volleyball court was turned into an oasis with multiple kiddie pools filled with water and beach chairs for owners to sit in and watch their dogs splash around (there was even an ice cream vendor selling Frosty Paws!), a rally area of different obstacle courses (hula hoops, bobbing for tennis balls, timed dog run), an off leash dog area, a performance arena for dogs to show their stuff, a spa area with different oils, aromatherapies, nail trimming, etc., and the CS firefighters along with their dalmation character. Java had a great time meeting other dogs and running around. Joey was pointing at all the dogs calling them "Java." It was a fun afternoon, and Java was beat from all the excitement by the time we got home.

Welcome Nathan Taylor!

We are so very excited for our friends Mark and Miya who had their first baby Nathan Taylor last night. Nathan was born Thursday, September 24, at 6:42 p.m. weighing in at 7 pounds, 3 ounces, 20 inches! Mom, Dad, and Nathan are doing well. Welcome Nathan!

Joshua's Journeys #14 G-tube

September 21st was the anniversary of Joshua's gastrostomy tube surgery, g-tube. HE also had a nissen fundoplication (Bethany loves that word!). In a sense it is a procedure to tighten the top part of the stomach so that Josh won't be able to regurgitate or aspirate any food. (So no throwing up!) Every surgery is a big deal, but to me this one wasn't as scary as the trach partly because I was already very used to seeing and working with people with g-tubes as a dietitian. An n-g (naso-gastic) tube is a short term solution, but for people that will need tube feedings longer term like Josh they require a more permanent placement like a g-tube. It is not only more comfortable, but also a whole lot more convenient. When Josh wasn't having a feeding he could be free of lines, and while getting a feeding it would go directly to his tummy and the only tubing in the way was the milk that was going directly to his tummy instead of annoying him by putting tubes up his nose and taping his face.

The surgery went well, and was rather quick (a few hours). We went through our same morning pre-op procedures of prayer and holding Josh as long as we could until it was time for the OR and time for us to camp out with Joey in our corner of the world in Peds. Josh came back from surgery with that same bloated, stoned looking face that we learned quite well and called "Post-op Josh". He was hooked up to the ventilator again just to allow him to breath without working, and he was weaned off of it within hours. We saw his g-tube site right away, and it wasn't long before he was warmed up and moving around. Surgery days were always very taxing, long, nervous waits, calling friends and family with updates, and being with Josh as much as we could. We learned quickly how to start, stop, connect, disconnect, clean, flush, and vent all of Josh's feedings. Between our assertiveness and want to care for Joshua in every aspect we could we were getting good at suctioning, changing trachs, and now in charge of his tube feedings. The nurses often commented on how they didn't have much of a job anymore!

Bowling for CHARGE

Bowling for CHARGE
On Saturday we had a very fun time Bowling for CHARGE! Crystal put together a fundraiser for the CHARGE Syndrome Foundation in honor of her daughter Eva, and in memory of Joshua and another CHARGE angel Ava. She put together a beautiful slide show of the three of them along with some info on CHARGE. There was a bake sale, plenty of pizza and pop, a raffle (which we actually won some pretty cool stuff), and of course bowling! It was a lot of fun. Crystal definitely put a lot of work into the whole day and everyone seemed to have fun and have a smile on their face.

We were able to see a couple other CHARGE families from the area that we hadn't seen since the Charge for CHARGE 5K so it was nice to catch up. Eva was there in her pretty pink dress, and of course cast to match (another week and a half to go!). It was great playing with her- Joey enjoyed giving her some of his toys and at the end of the day was trying to push her in her wagon to head out.

Nonna, Grandpa, Grandma, Auntie Pam, Auntie Trisha, Auntie Tiffany, and Brian were all there to participate in the festivities. Thank you Crystal for including Josh in the day, the whole day was a huge success. You did a great job! Of course it never fails, our camera battery died pretty quickly once we got there, so you'll have to visit Eva's blog to see more pictures (Crystal's pictures are always better anyways). And no, Joey is not actually holding a blue bowling ball in some of these pictures, he has a balloon! But he did have fun with daddy pushing a bowling ball down the lane.

Last Week's Update

Tot Rock
The past two Tuesdays Joey has been having fun at Tot Rock. It is a class we are taking at the park district where Joey gets to sing, dance, and play with mommy and other kids near his age. He is really enjoying himself. I keep bringing the camera, but forget to snap a picture. One of these weeks I will!

Best Wagons rides are at CDH!
The ER to be more specific! Joey had an intimate meeting with the banister Thursday evening just before bedtime. His point of contact made a huge egg sized bump and a little cut on his forehead. Being about a half an hour before bed we didn't want to let him go to sleep without knowing he was ok, so we decided to take a fun filled trip to the ER to check it all out. Joey was too excited to even think about bed time, and enjoyed being pulled around the halls in the wagon. Of course he was fine, we just needed to wake him every hour for the first 6 hours of sleep which he pretty much did on his own since he likes to sleep on his tummy and thus his forehead too! Since I'm posting a few days later, he is still doing fine, the lump is practically gone, he just has a small little scrape and the bruise is more greenish yellow now.

Please pray...

Please join us in prayer for the sweet life of Moriah Nelson and her amazing, strong, resilient parents Victoria and Justin. While we have never met in person, we have been brought together through the CHARGE community. I have seen so many similarities in our lives. Victoria and Justin's relationship reminds me so much of Phil and I- the way the two look, how they seem to deal with the stress of having a chronic child, and their determination to keep life as normal as they can. However, everyone has a limit. They have been stretched to that limit for way too long. We follow their blog daily, and our hearts ache for them as we recall similar events we had with Josh, and our hearts celebrate every moment they share as baby, daughter, mother, father, and family.

Please take a moment to look at their blog: momentswithmoriah.blogspot.com and see what an amazing family they are and the journey that have been on. Their most recent post hit me in a spot that I can't shake off and continue with my day. They are desperate right now. Moriah has been in the hospital for the past 10 months, always anticipating to go home but then sidelined with some infection that no one can seem to figure out. It is a most frustrating place to be. Josh had a similar situation towards the end of his time on earth where no one knew why his labs were out of whack, and outside of that he was absolutely fine. We felt like he was being held hostage in the hospital. On top of it, bills continued to pile up from his NICU stay, surgeries, and hospitalizations. Josh was well over a million dollar baby, and Moriah I'm sure has more than tripled that now. Hearing advice of people say "Don't worry about finances. Don't worry about work. Don't worry about next month, next week or next year. Enjoy every moment you have and be thankful. You guys are so strong, I could never do that. That's just the way he is." The comments from those who have never been on that other side are endless and exhausting.

All we are asking is deep, concentrated prayer for Moriah, Victoria, and Justin. Please join us...take a look at their blog and pray whatever is in your heart for these most wonderful people.

I heard this song one time driving down to Children's to be with Joshua and feel it is just as perfect for Victoria. My heart aches for this wonderful mother.

Mark Schultz - He's My Son

I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

Can You hear me?
Can You see him?
Please don't leave him
He's my son

A Chance Meeting (Joshua's Journeys #13)

This morning Joey and I went to Cosley Zoo, a small zoo in Wheaton. The weather was perfect so we thought a morning out would be great. While we were there we saw many mom's, grandparents, dad'd, and their children among the animals. We were one of the first ones there so we could walk around before nap time. We saw a woman with a double stroller, and didn't think much about it. Many people have double strollers when they have two kids, not just twins. We passed each other with a little hello and that was it. Later on, I noticed her son walking around and babbling, the little girl inside the stroller. After running into each other a few more times I noticed that the little girl had oxygen on. The mom eventually pulled out the little girl and put her on the ground to let her walk a little. She looked a little more delayed than her brother, and definitely shorter and thinner. However, I knew those skinny, skinny legs. I knew immediately that those two must be twins, even if he was almost a whole head taller than her.
After walking around a bit more we ran into them again and this time the mom was holding the girl while her son was running off. She was trying not to trip on the tubing and trying to keep her son in eyesight. I looked over and told her he was fine. I didn't want to intrude and pick him up or ask her for help. She seemed a little embarrassed and overwhelmed, but I knew nothing she wasn't used to. I remembered many times with Josh I felt like people were always thinking I was a basket case or a complete mess trying to take care of two kids, one having so many special needs and equipment. I didn't want to say anything to this woman because I didn't want her to think she was sticking out, and truly her son was nowhere near as unruly as some of the other kids running around. I was however thinking about Josh and admiring this woman for having her daughter out, not being scared or tied down by equipment. I was so glad that with Josh we allowed him to live a normal life. We took him so many different places. I never wanted him to be left at home or have us all staying in because of a disability. Yes, we had our trying times, our looks from strangers, and wondered sometimes ourselves what we were doing, but we weren't going to let circumstances get in the way of life.

We saw the woman walking with her daughter and son once again and he son started to head off as she was stumbling over tubing again whisking her daughter back into her arms. She smiled at me and said "My two tornadoes!" I decided to say something. I told her that I thought her daughter was doing and awesome job with walking, and told the mom that I was so glad to see her out with both of her children and not letting equipment hold her back. And then I asked her if her kids were twins. With a practically jaw dropping stare she said yes and asked how I knew when most thought that they were a good year or so apart. I told her that Joey is a twin and his brother had those same skinny legs, and although born a little bit taller (one inch) and a little bit heavier (3 ounces) he struggled to keep up with Joey. With a relieved look she said "It takes one mom like us to know one!" She talked about how when they were born people new they were twins, but then the boy got bigger and the girl didn't grow as quickly. Soon people thought that they were a year apart, and now she said most think a couple years difference. Her daughter has heart and respiratory problems. She was in the NICU at Edward for 3 weeks, and has had 3 heart surgeries. They are looking to another one soon. I told her a little bit about Joshua as well. She mentioned to me that when her kids get a little bit older she would like to go into nursing because of all of this. We then parted ways, her son was ready to move on and Joey was looking for another animal to point at.

Just before leaving we saw her again and she asked me how old Joey was. I told her, and then also mentioned that baby number 3 would be 17 months apart (give or take) and I would probably be in the same place I was with Josh and Joey, only Joey will be the small guy this time. If baby number 3 is a normal size I'm sure she will quickly catch up to Joey at least in their early years. I imagine at some point people will wonder if they are twins, and possibly later if she is older. Of course this could be totally false, but I just think it will be easy for this baby to surpass a preemie who is still only in the 3rd percentile for weight and 10th for height! Anyways, in talking this second time she asked about Josh's ears again and mentioned that her daughter was born with an ear that was quite pointy and she had an encounter with some kids one day asking what was wrong with her ears. She said that she was so upset, and later her husband told her she should've told them she was an elf. I recalled our very first appointment outside of the NICU and the pediatrician. It was at the endocrinolist, and there were two kids one looking about junior high age, and the other a few years younger. Seeing a baby in a stroller the older girl had come by to take a look at Josh. Once she saw him she gasped and she looked up at me. Seeing me stare back at her she quickly walked away. Her younger brother came up to see Josh shortly afterwards, and with the innocence of a little kid looked at Josh and asked "What's wrong with him?" The sister came over to try and grab her brother before she heard me explaining how the trach helps him breath, and his ears are the way they are because he was born that way. It is amazing the things that kids say, but even more amazing is the glares and comments from adults. I won't go into the outrageous things that people have said to me and Josh, but it was definitely a life lesson in sociology.

The woman and I wrapped up our conversation once again as we were both getting ready to head home. I told her I would be thinking of her and her daughter with the upcoming surgery. She later said that they were seeking a second opinion on something because of discrepancies with the cardiologist and pulmonologist. We both kinda smiled and laughed and commented on how involved you have to be in advocating for your child. She told me she was very glad that I did say something to her and that we were able to meet.

Once you have loved Josh, or a child like him, there is no turning back. You feel some gravitational pull towards children with special needs. When I saw that little girl with her skinny legs, taped up face holding the oxygen in her nose, I wanted to scoop her up. I couldn't tell you one thing about any of the other kids there, but I could draw a picture (if I were an artist of any sort) of every detail on her beautiful face. I hope her 4th surgery goes well, if it is required, and I pray for her and her family.

Touch a Truck and Block Party

Towards the end of the week last week we had Aspen over for a couple of days. Joey really enjoyed playing with her. Java has learned to get up and walk away when she's had enough, but poor Aspen just layed there while Joey gave her hugs and kisses. Joey wanted to help feed Java and Aspen while mommy was making lunch, so after a boom this is what we found...


Saturday we went out by Grandma's house to the park down the block from her. They were having a Touch-A-Truck event going on where Andrew and Joey were able to see, touch, honk, and climb around on school buses, tractors, police cars, fire trucks, and there was even a helicopter there too! Joey seemed to like the fire truck the most. The wagon ride with Andrew was a lot of fun too, they both had their construction hats on. (And I had to take a picture of Andrew eating my favorite- PB&J!)


That evening Joey saw another firetruck at our block party. Our neighbors next door made sure Joey got a turn in the truck and helped him with the hats, and showing him around the truck. They are so nice, and always including Joey when they can. The firemen broke out there hoses for a while too, which Joey enjoyed watching and Gigi got soaked!


Sunday was our friend Jarod's 10th birthday party. Sorry no pictures of that yet, but Joey had a lot of fun playing with Jarod's old trucks, sidewalk chalk, balls, and clinging to John!

Joshua's Journeys #12- Vent free and more

On Sept. 15, 2008 Josh became vent free! After his trach surgery he still had the ventilator hooked up to his trach to help him acclimate to his new airway. Josh did well and was weaned quickly. We sang "I've Got No Strings to Hold Me Down" a la Pinocchio. It was so nice to be able to pick him up whenever we wanted without worrying about the vent or other wires in our way. Josh was even ready to start working with a pacifier now to learn how to suck! Josh did have a humidifier (the blue thing in pictures) that would help moisten his airway while he was resting, but for the most part he just used the humi-vents/noses so he was very mobile. He seemed to like holding onto it, and we put a little puppy wrist rattle on there for him too. Eventually at home we learned that Josh did much better without the trach collar (humidifier) on him, as long as we had 3 or 4 humidifiers going at night in his room. It felt like a jungle in there!



That night however, became a very scary one for us. Josh had coded in the middle of the night- around 4am. He needed CPR and was resuscitated successfully. The reason for his event we still don't know. It was thought that he possibly had a reaction to one of the anesthesia medications, but an anesthesiologist that we got to know a little better had later told us he did not think that was the case at all. Another thought was that he had a seizure, something we were wondering if he would develop as time went on. He had been seen by a neurologist (not to be confused with neurosurgeon whom he will see soon as well) and all we were told was that it was possible that he could have a seizure and we would never know his likelihood until he had one. After this scary event in the wee hours of the morning, Josh had a brain study done for 24 hours to try and detect any sort of seizure activity since in babies it is really hard to tell if they are having a seizure. Sometimes babies will convulse, but most often it will be one limb- a hand for instance that will tremble and can easily go unnoticed. In addition, babies can have staring seizures where they focus on one point for a long time. So in order to determine if Josh had a seizure we did the brain study. The poor little guy had a mummy wrap on his head...which he would soon get used to having stuff like that once his shunt surgery (next month!). The results of the study: no seizure activity! So the scary night became a mystery as to why it happened, but it also helped strengthen a lot of communication between people in the NICU, their understanding of how involved we are and wanted to continue to be, and how much we all were fighting for Joshua.


The following day, Sept. 17, we learned from one of the NICU docs that Joshua's testicle had dropped! One less surgery for us to worry about! It is another common thing for CHARGE babies to have undescended testicles (one part of the "G" in CHARGE)that later require a procedure to drop them, but thankfully one less thing to check off our list!

The next big thing schedule for Josh would be Sept. 21 when he had his g-tube placed (yes, surgery!). Right now Josh has been getting his breastmilk through a naso-gastric tube, it is a little tube that goes into the nose and feeds down into his stomach. It is the short term solution, which is why many others that are in the hospital may have had a n-g tube, but it is easy to pull out (thus the tape on some pictures) and much more comfortable and convenient to have a g-tube for those that will need it longer term. As I mentioned before, Joey also had an n-g tube the first few days of life while he was trying to figure out how to suck and swallow. Josh will take a bit longer to learn this skill, so the g-tube surgery was scheduled (again!)for Sept. 21. Since Josh didn't have the ventilator anymore, or anything obstructing his mouth, he was ready to start working with a pacifier to learn how to suck. At a later time I will post about speech therapy (probably many posts!). I don't know if part of it is the dietitian in me, but I LOVED working with Josh on his eating, sucking, all the speech therapy goals we had.