"Thank heaven there is tomorrow. Because there is tomorrow, all our yesterdays have meaning and all our dreams have hope."

Thursday, December 27, 2007

Christmas at the Cabin

We had a nice, quiet, white Christmas at our new cabin in Parowan, Utah. The cabin was not entirely furnished, but we had a BLAST anyway! We watched movies, read, slept and just relaxed all weekend. It was nice to escape for a little bit with family and have a WHITE CHIRSTMAS!
Here are a few pictures from our weekend:
Me and Jason by the Christmas Tree

Becca and Matt hanging out in the great room

James and Becca decorating the Christmas Tree

Becca on Christmas morning

James creating a snowboarding jump on our drive way. . . yes, there was THAT much snow

Matt jumping the snow-ramp on our driveway

A Grief Observed

How can I even explain how I understand this book by C.S. Lewis? My friend gave this to me after Gavin passed away and I am just now getting a chance to read it. I haven't finished the book yet, but I think I grasp the raw, uncontrolled emotions he speaks of concerning grief. Through his writings you can visualize the grief cycle and the different stages we feel after the loss of a loved one. The one thing I am truly beginning to understand it that grief does not make sense. Feelings do not always make sense, and pain does not always make sense. Doubts, fears and questions are always there in the back of your mind. There is one quote that really hit home to me concerning the grief of a mother here on earth: "If a mother is mourning not for what she has lost but for what her dead child has lost, it is a comfort to believe that the child has not lost the end for which it was created. And it is a comfort to believe that she herself, in losing her chief or only natural happiness, has not lost a greater thing, that she may still hope to 'glorify God and enjoy Him forever.' A comfort to the God-aimed, eternal spirit within her. But not to her motherhood. The specifically maternal happiness must be written off. Never, will she have her son on her knees, or bathe him, or tell him a story, or plan for his future, or see her grandchild." During this part of his book, he is angry and doubting God and His works. I have to admit my own weakness and doubt I have felt over these past few months. There have been times that I have wondered how a kind, just, merciful God would take away my baby boy. I wondered where his mercy was for me. Even knowing that we are an eternal family does not always fill the empty ache I feel inside when I miss my sweet Gavin. Just like C.S. Lewis said, we may know that we can be together beyond this life, but it doesn't always comfort the mother who aches to hold her son now.
One night I was talking with my mom and dad asking them why God would take such a beautiful boy - the joy of my life - from me. My dad had a specific insight that I feel to be very true. He said that we willed Gavin to be here. From the beginning of the pregnancy, things were rocky. We fasted, prayed and asked the Lord to help me carry this baby. And He did. After Gavin was born and we found there were problems, we fasted, prayed and willed the Lord to keep Gavin here. And He did. Gavin had blessing after blessing given to him, and still the Lord's will had to be done, however; Heavenly Father let us figure out what needed to happen for Gavin so that we could give him back instead of Him taking Gavin back. He let us figure out Gavin's plan. That is a kind and merciful God. That is a God who helps soften the blows of reality; and that is a God who answers prayers. I cannot ever say that God has forsaken our family. He has given us the blessings of an eternal family; and even in our moments of despair - the knowledge of the gospel can bring light into our darkest nights.

Tuesday, December 25, 2007

Jason's Christmas Gift

In November I decided to attempt a patchwork quilt using the few outfits Gavin wore for Jason's Christmas gift this year. We talked about what we would do with Gavin's old clothes (I could never dress another child in his clothes) and we decided we would just put them in the box Jason's brother Brent made for all of Gavin's toys, clothes, etc. One night I was feeling ultra lonely and I wished I had something to cuddle with that belonged to Gavin. . . and then I had the idea of a quilt. I thought it would be nice to have something of Gavin's that you could touch and love. I spent quite a few hours working on the blanket and I had to be sneaky so Jason wouldn't see it. Sewing really isn't my "thing" so I felt like I had accomplished quite a bit when I was able to give the blanket to Jason on Christmas Eve. Here are a few pictures of the quilt . . .

I never EVER thought I would have time to do something like this. It was actually kinda fun!

Merry Christmas Daddy!

Tuesday, December 18, 2007

My Christmas Cooking Fiasco . . . It Happens Every Year

It's inevitable. Every year around this time I somehow end up on our kitchen floor crying. I wish I could tell you I don't know how this happens . . . but I am fully aware. It usually begins around Thanksgiving when I start planning my Christmas list. Without fail, I compose this grand idea of baking and cooking so we can have treats to take to our friends, coworkers and neighbors. Perhaps I am the "Clark Griswald" of Christmas baking. I have these huge ideas that somehow don't turn out how I imagined. Then, as I begin my monstrous task of baking I realize I just can't do it all. That's when I end up on the floor. This year was not any different than the years before. As I started baking last night I watched Jason evaluating the situation. Poor Jason . . . he gets the brunt of my baking woes. So, just as the years before, my Christmas baking ends up a mess and Jason stands there watching his out-of-control wife freaking out on the kitchen floor. Maybe next year I just need to stick to sugar cookies! :)

Friday, December 14, 2007

The Twilight Series

I have officially joined the masses . . . my friend Amber let me borrow Twilight to read. She loved the book and I have heard so much about it, so I decided to read it. Who knew I would love it so much? I really have no business staying up late at night reading when I have so much to do to get ready for Christmas - but I couldn't put it down. I have to admit the idea of this book is different . . . but as I read it I really fell in love with it. I even went out last night and bought the next two in the series. It also doesn't hurt that one of the main characters is so easy to fall in love with. :) It's nice to read a feel good book with a cute love story.

Monday, December 10, 2007

Our Law Firm's Donations to the Ronald McDonald House

In honor of Gavin, my dad's law firm did a toy drive for the Ronald McDonald House here in Las Vegas. I was completely overwhelmed by the generous donations that were given. The House estimated that over $3000 was donated in new toys and there was a VERY generous cash donation as well. Tonight our family (minus my sister Becca who is at BYU) was able to take the donations to the Ronald McDonald House. It was so nice to be able to give back to an institution that was a help for us during our time with Gavin at PCMC. There are so many good people who are willing to help total strangers. I can't imagine how difficult it must be to have a sick child in the hospital during the holidays. My heart goes out to the families who have to endure such trials. So, THANK YOU to ATM&S Law Firm. We appreciate your love and compassion to the families at the Ronald McDonald House during the holiday season.

Saturday, December 8, 2007

The Christmas Box Angel Memorial Service

On Thursday December 7, 2007 Jason and I went with my parents to the Memorial Service at the cemetery where Gavin is buried. This is a Christmas service for all families who have lost children. The inspiring story behind the service is the book called The Christmas Box Angel by Richard Paul Evans. This book is about an old woman who seems to disappear every December 6th. By the end of the book, we find that every year this woman visits to the grave of the child she lost and lays a white rose in the arms of the angel monument built for her child. There is much more to this book . . . but I would hate to ruin the ending for anyone interested in reading the book. Every year the cemetery where Gavin is buried does a memorial service and families can lay a white rose in the arms of the angel monument built in the children's section. After the service and the dedication of the Angel for the year, they light up the beautifully decorated Christmas Tree in the children's section and they sing Christmas Songs while we decorated our children's graves. Perhaps this is morbid to many of you . . .

I guess I the most thought provoking part of the evening was that I realized for the first time WE ARE NOT ALONE! I know in theory many people have had to endure the loss of a child, but it is difficult when YOU are the one coping with the loss. I would imagine there were over three hundred people there - people from all over the city came to remember their children. As odd as this may sound, it was actually a calm and peacful experience. We were able to talk with a few of the parents there at the service and find out about their children and experiences.

As Jason and I, along with my parents were decorating Gavin's little Christmas Tree, a little girl about two years old walked over to us and with a sweet little voice looked at me and said very matter of fact-ly, "There is a baby there. I need to see him. I need to see him!" She was so small and you could tell her mother was embarrassed she was asking to see Gavin. I talked to the little girl for awhile and explained to her that this was my baby and he had passed away. Her mother then told her that Gavin was like her two brothers and sister. This poor mother had lost three children. I didn't have the words left to say to her except to say I was sorry. What more can you say to a mother who was aching so badly for her three children? Needless to say once again I felt like I was not alone.

It was a beautiful night, and we were able to set up Gavin's little tree by his grave site marker (his headstone still isn't in yet). I decided I would add a few pictures of decorating his tree . . . perhaps this is odd. It felt odd. I have to say this isn't how I expected to spend my first Christmas with Gavin, but it reminded me there are many other families who know this pain. There are many other people who need comfort during this holiday season. I hope we can all take the time and step out of our pain to help and comfort those that need comfort.

Wednesday, December 5, 2007

Back to Work!

I went back to work this week. Yes, finally I am getting a routine back. Those of you who really know me know that I thrive on routine. The past four months have been anything BUT routine. It's been quite an adjustment to actually have a daily routine. I was able to go back to my same job at the law firm, and I am so grateful to have that opportunity. I have had a hard time getting used to life this way again. I know it's not a rational thought at all, but I feel guilty going back to work. I feel guilty because I feel like I am betraying Gavin. I know it doesn't make ANY sense at all . . . but that's how I feel. For the past four months I have done nothing but take care of Gavin, the insurance companies, medical bills, plots and headstones. Now, it's done. There is nothing left to physically do for Gavin. It's time to get back to work. It's an odd feeling to have been mentally prepared to stay at home full time with a VERY high needs child - and now I am back at work doing the same thing I was doing six months ago. I can't rationally justify my thinking - I guess that's called emotions. I am glad to be back - I know it will be good for me. I really love my job.

Friday, November 30, 2007

I Love Christmas Movies!

Can I just say how much I love Christmas movies? This is one of my favorite parts of the Christmas season. There's nothing better then pajamas, hot chocolate and a fun Christmas movie. Call me childish . . . but it really is one of the things I look forward to each year.

Wednesday, November 28, 2007

Gavin's Christmas Tree

Each year in Salt Lake City, UT they set up the Festival of Trees. This is an auction for decorated Christmas Trees and the proceeds go to Primary Children's Medical Center. Families or organizations can decorate a tree and then the Festival of Trees opens to the public and people are able to bid on the trees. In honor of Gavin, Jason's wonderful family (extended members and all) decorated a tree to celebrate Gavin's life. In the picture you can see one of the little lamb blankets that Gavin loved so much. It's a beautiful tree and I feel so honored that Jason's family would think to do such a wonderful tribute to Gavin and provide such generous donations to Primary Children's Medical Center. It's a beautiful tree and I just bawled when I saw the picture Jason's father sent to us. What a wonderful blessing to have married into a family that is so loving, kind and thoughtful. This tree really means a lot to me for many different reasons. Not only does it represent my sweet son, but it helps Primary Children's Medical Center. This hospital is a non-profit hospital designated especially for children like my Gavin . . . and it truly did help him. What a wonderful way to help other children with the donations from the bids on the Christmas Trees. So, thank you to all of the members who helped decorate this tree. It means so much to us.

Tuesday, November 27, 2007

Something To Look Forward To!

These past few months have been overwhelming and exhausting physically, mentally, spiritually and emotionally. So, we need a little break. My parents thought of this idea way before we did . . . but we need a VACATION! We need a chance to get away and recuperate. They think a change of scenery will help us and I am sure it will. Jason and I had a wonderful time on Maui in 2006 and I am sure our upcoming trip to The Big Island of Hawaii in January will be awesome too. It's a funny story how we got the airplane tickets . . . my cute mom earned them with her bum! Literally! No kidding! My family went to Hawaii this past June, but since I was REALLY pregnant I couldn't go. (However; my dad tried to talk Jason into going just for a few days and leaving me at home alone. HEH HEH HEH) Anyway, my family was sitting in first class on the way home from Hawaii and the airlines overbooked the section. They asked if anyone would volunteer to sit coach for a free airline ticket anywhere and my mom said she would. Then Matt negotiated their way to two free tickets anywhere - my crazy 16 year old brother! So between Matt's negotiation skills and mom sitting in coach . . . Jason and I are reaping the benefits! It really will be nice to get away and have some time for the two of us to be together. I am really looking forward to the trip! So . . . THANKS MOM AND MATTY your bum and negotiation skills are awesome! :)

Sunday, November 25, 2007

Happy Thanksgiving!

I know I am a little late on the Thanksgiving thing . . . but it has been a super busy weekend. Jason and I had both of our families here in Las Vegas and a few cousins, nieces, nephews, grandmas, grandpas, aunts and uncles. We had about thirty people for dinner and it was crazy but fun! We are so lucky to have wonderful families that get along so well. Thanksgiving was a difficult day for me - it was really tough going through this first holiday without Gavin. I just always felt like someone was missing. It was all I could do to just be there - I was in survival mode that day. I told my mom that it was difficult just to be there - not because I didn't want to be there - because I really felt Gavin's absence that day. Throughout this weekend I have really had a moment to reflect on what I am grateful for . . . I could go on and on. I am thankful for my sweet husband and my son Gavin. My two boys have taught me so much and I never knew I could love two boys the way I do! I also thought about how wonderful families are and how much I love both my family and Jason's family. We have wonderful parents and siblings who love each other and have a fun time together. This weekend has meant a lot to me while reflecting on how I feel about my family and friends. I love you guys!

Tuesday, November 20, 2007

Elfin' Around

I know this funny cartoon is going around. Jason did this one earlier today and I laughed until I almost wet my pants. For those of you who haven't seen it . . . you will laugh. Just click on the link below.


Don't Forget the Pop Tops!

I know I talk about this all of the time . . . but DON'T FORGET YOUR POP TOPS! Many of you know that while Gavin was at Primary Children's Hospital in Salt Lake City, UT my mom and I stayed at the Ronald McDonald House. This is a house where parents with hospitalized children can stay for $10 a day. They also provide meals, rooms, and many of the comforts of home while you are away from your own home. My point is . . . I am not done helping this organization. So many people have made generous donations to the Ronald McDonald House and we are so grateful and humbled by your generosity. One thing we can still continue to do is collect the pop tab off of soda cans. The House makes quite a bit of money by recycling these small tabs. So, PLEASE save the pop tops! I will be more than happy to take them from you and send them to the Ronald McDonald House.

Thursday, November 15, 2007

My Funny Hubby

I feel so bad. . . the past three and a half months have been completely devoted to Gavin and I feel at times I have neglected my sweet husband. Some people don't know how freaking awesome my Jason is. These pictures I posted were from our "dating years" in college. We had so much fun, and I can't even begin to describe how much I love and appreciate Jason. I love him more than I thought possible, and he has so many amazing attributes. For those of you who know Jason, you know he has quite the sense of humor. With the circumstances of the last few months . . . humor has been a necessity for survival. When Jason proposed to me, he promised me that he would make me laugh every single day. Every day with Jason is a blast. Who knew that five and a half years after being married I would love him more than the day I married him. I just hope I can be a the kind of wife he deserves! I know this is such a mushy blog entry, but I needed to let Jason know how much he means to me. LOVE YOU J!

Friday, November 9, 2007

Thank You! Thank You! Thank You!

I don't even know where to begin to thank everyone who has helped us and supported us through this difficult time. I wish that I could thank each one of you personally. I know there are so many people who have prayed and thought about Gavin . . . and we wanted to sincerely thank you. Nothing about this journey has been easy. Nothing. But, we have had joy and we will continue to have joy when we remember our sweet Gavin. Gavin became not only our baby, but a person who has changed me. I know that sounds odd. . . but I think he has inspired so many of us. I have said this many times before, but he has taught me more in his short three months than I could have taught him in a lifetime. Jason and I truly appreciate all of your love, care, prayers and support. We often comment how we wouldn't be able to cope if we didn't have the amazing family/friends that we have been blessed with. We have met so many good and wonderful people through this experience. You have blessed our lives, and we love you.

Wednesday, November 7, 2007

Gavin's Poem

He let me have you for just a little while;
God gave you to me to make me smile.
You came into the world so quiet and small;
I knew from the start you stole it all.
A place in my soul, my arms, my heart;
You had it all . . . right from the start.
Your little fingers wrapped around mine;
We knew we had you for only a short time.
Your beautiful blue eyes, they captured my love;
Like an angel you were sent to me from above.
A love you gave, so perfect and true;
A perfect boy born into a world you didn't have to go through.
You were too perfect, too innocent and pure;
I knew I'd do anything for you, of that I was sure.
I think I did all a good mother could do;
And then I realized this wasn't up to me or you.
For you we fought, and struggled and prayed;
And then it all seemed to make sense one day.
Your time grew short, we knew you would go home;
And once again, we would be left alone.
You endured so much and put up a courageous fight;
But now, my mother arms ache to hold you tight.
Tender moments of time we were all given;
Before we had to send you back to heaven.
Father, hold my baby in sweet arms of thine;
Until once again I can hold him in mine.

To small to pick up a stone;

He moved a mountain, grew weary and went home.

- author unknown

Tuesday, November 6, 2007

The Day We Said Goodbye

I hope this isn't too morbid to post about Gavin's funeral . . . it's some level of closure for me. On Friday November 2, 2007 we had Gavin's memorial service. It was a wonderful experience and I was shocked at how many people attended. Who knew that a little three month old boy could have such an impact on so many people!? Jason and I gave Gavin's eulogy, we had a beautiful piano solo by Diann Stewart and Jason's father talked about the Plan of Salvation. The Bishop closed the services and explained why Jason and I were able to stand and share Gavin with others. . . it is because of our faith that we are an eternal family and that one day Gavin will be waiting for us when our time on earth is finished. My father dedicated the grave site and it was a beautiful yet difficult experience.

The past few days have been filled with ups and downs. Many times we are at peace and then one of us will break down and cry. We tried going to church on Sunday, but it was just too difficult. We left the church and went to see Gavin. Everyday I have gone on a walk over to the cemetery. It takes about an hour to walk there and back, but it's nice to see him. Even sitting next to him now brings a level of comfort. This is NOT an easy journey, however, Gavin's life was beautiful. He is still beautiful, as we remember the precious three months God granted us to be with Gavin.

Saturday, November 3, 2007

A Blessing And A Name

I just wanted to back track for a moment. . . my last entry was so short and there is so much I wanted to say. On Saturday October 27, 2007 we knew that Gavin would not live too much longer. It had become very apparent that his situation was rapidly declining and that he would be leaving us soon. The staff was so amazing at PCMC. . . they catered to every religious wish we asked for. The one thing we wanted was to bless Gavin giving him a name. I have to admit, this is NOT the way I thought of blessing our baby. Most parents get to do it on Sunday in front of the whole congregation, but I soon got over my moment of selfishness and asked if we could buy a blessing outfit nearby. My mother-in-law and I were escorted by the charge nurse to a closet full of blessing outfits. I picked out this beautiful white suit for Gavin to wear while his dad gave him a name and a blessing. They also gave us a white blanket to lay him on in his crib. Jason and I went back to Gavin and we were able to bathe him and get him dressed. It was quite the ordeal to get the blessing suit on him with all of the monitors and attachments he had on his little body. It was a beautiful experience to bathe our son and dress him like an angel.

The staff allowed all of our parents, siblings, and grandparents to come back around his crib while Jason gave the blessing. Gavin was awake and focused as each person came to talk to him. My baby. . . my sweet little baby. Jason gave a beautiful blessing, and there are things he promised Gavin that I will never forget. How blessed we are to know that the Lord loves little children. That day, I knew without a doubt, that the Lord loved Gavin and our family so much. Even in a trying, sad and desperate time, Gavin calmed our spirits and testified to us that there are eternal families and that if we live according to what we have been taught, we will be together again. My sweet little boy . . . I have learned more from you in three months than I would have been able to teach you in a lifetime. I love you my baby Gavin.

Monday, October 29, 2007

Sunday October 28, 2007

Sunday morning our sweet little Gavin returned home to our loving Heavenly Father. It was a sweet, peaceful experience and I don't have too much time to blog about it right now. . . but I wanted to let people know. Jason and I were able to lay in bed and hold Gavin by us for a few hours until he passed. His life was beautiful. He is our beautiful blue eyed, blonde hair boy who is waiting for us after this life.

We are having a very small funeral service on Friday November 2, 2007 to remember our Gavin James Bailey. It will most likely be held at the LDS church on North 215 and Jones by the Palm Mortuary Park.

We don't want people to be sad. We want to celebrate Gavin's three months of life. Hopefully I will have a bit more time to write in a little bit. . .

Thursday, October 25, 2007

A Day That Makes Our Heart Stop . . . Literally

I don't know what to say about yesterday. It was a really bad day. I thought I would just post quickly about it. Yesterday Gavin had a nurse who wasn't too attentive to his needs. I just never felt like I could leave him - so I didn't. I sat by his bedside for nine hours yesterday, and I am glad I did. Around 5:00pm he was hooked up to an EEG machine to look for possible seizure activity. The nurse was suctioning out his nose and he became very upset. We are not sure if he had a seizure, or if he held his breath - but he stopped breathing completley and eventually his heart stopped. It only took a few seconds to get him going again, but they did call a code blue and about thirty (yes - I really mean thirty) people came to his bedside . . . crash cart and all. It was terrifying. I bawled and freaked out. But, I have to say there are VERY good people in this world. As he started to drop the mom of the baby next to me jumped up and held on to me. When the director of the NICU heard the code, he immediately was at Gavin's bedside and once he saw that Gavin was doing better he walked over to me and hugged me. He kept his arm around me until Gavin was back on track. He never left my side. I guess my point is . . . people care. People really care not only about Gavin, but about us too. The mom next to me could have just watched as it happened, but she didn't. She came to help in the way she was able to help. I want to be like that - helping people even if I don't know them that well.

Gavin has had a better day today. He is eating through his G-tube (just a very small amount) but so far it's working. Once it's working we will be on track to go back to Vegas. Now I am heading back up to the hospital to do physical therapy with Gavin. It's my good part of the day. :)

I hope I am not too depressing . . . it's just a roller coaster. It's a better day today.

Monday, October 22, 2007

Our Roller Coaster . . . aka . . . Our Life!

First of all . . . I just typed a huge entry about the events of the past week, and the Internet connection failed so I have to do this all over again. GRRRRRRRRRRR!!!!
One of the things that has been very evident over the past three months is that life is a roller coaster. There are many ups, and there are many downs. This past week has been a really good week for Gavin. Although we don't LOVE the answers we are getting, we are getting answers. I'm the kind of person who can deal with things better when I have information. That must be the control freak in me. . .
We had a family conference with Dr. Beachy this weekend (Jason was able to come up again) and she said that Gavin will show what he can do with time. Doesn't she understand that she if talking to the most impatient girl in the whole wide world?!? :) Actually, it's really okay. It has taught me that I don't have to be in control of everything. I guess a roller coaster ride wouldn't be all that great if you predicted everything. Gavin will show us his limits and successes. This weekend Jason pointed out that we will be thrilled with every milestone Gavin accomplishes. We know he will be delayed and there are some milestones he may not reach, but we have seen so much improvement over the past month or so. He is much more alert and attentive and he seems to know we are his parents. You should see the way his eyes light up and how much he kicks his little legs when he sees Jason. It's like he has been waiting for him all week. :)
There isn't too much in the way of new news about Gavin. The "down" part of the roller coaster this week is that Gavin has developed another lung infection. I guess this is something we are really going to have to watch for Gavin. A trach is an open airway to the lungs, and being in a children's hospital has brought it's fair share of germs. This has made him have a bad weekend as far as breathing goes, but as of tonight he looked much better. It seems the antibiotics are helping Gavin. The "up" side of the roller coaster this week is that we are talking about a back-transport to Las Vegas within the next few weeks. They will send us back to a hospital in Vegas to coordinate his last bit of care and his home health care. We are looking at 24 hour care at home for this little kido. Hopefully he won't need it too long, but it will be good to have as we get used to taking care of him at home It will be interesting.
As I was typing this I realized how factual I sound. It's not that I am negative, it's just at this point in the game facts are what we know. It's easier for me to get through this if I know exactly what I need to know. Unfortunately, Gavin is a mystery. I guess Heavenly Father is teaching me how to rely on him. He builds our roller coasters, but he never will give us more than what we can do. We have seen miracles, and I intend on asking for a few more. . .

Wednesday, October 17, 2007

A Tribute to My Mom

I don't know how I could possibly be doing all of "this" without my mother. I never knew how lucky I was to have a mom that stayed at home. Through this whole experience with Gavin, my mom has gone to the hospital with me literally every day. She has been there with me to receive happy news, sad news, questioning the doctors and most of all for moral support through this difficult time. She has stayed with me in SLC . . . leaving her family at home. I can't imagine what sacrifices she is making to help me. I am so lucky to have a father who is so supportive and helpful so that my mom can be with me. She has devoted days and weeks to helping me help Gavin. She will never understand how grateful I am to have her as my mother. She is a voice of reason and logic when I am unreasonable. She is a shoulder to cry on and she is great for a laugh. Not only is she my mother, but she is truly my best friend. I love you momma!

Tuesday, October 16, 2007

A Gavin Update

I have been so busy with our little Gavin that I haven't had too much free time to blog. I decided this is my only form of journaling . . . and I should be better at it. We had a nice weekend with Jason here in SLC and I was sure glad he was here. On Friday we found out conclusive news about Gavin's cranial nerves from a more specific MRI result. It appears that Gavin did not develop cranial nerves to hear on either side. This means that hearing aids and implants will not help him hear at all and he may have issues with balance as he learns to move. I guess we will be learning sigh language. We also found out that Gavin does not have any facial expression nerves on his right side. This may explain why his mouth falls on that side. On his left side he may have SLIGHT facial expression nerves. The serious problem is without facial movement swallowing is virutally impossible (try swallowing without using your cheeks) and this means that we will need to suction him to keep his airways from building up secretions and blocking oxygen from his lungs. Perhaps he will be able to adapt as he grows, but this will always be an issue for him. It seems if we keep the secretions clear and out of his throat and mouth he keeps his breathing patterns much more stable.

As for a diagnosis, we have been told that there is a very good chance we won't have one. I THINK we can accept that. . . just as long as we know what we need to do to help Gavin achieve all he needs to do. He is the best thing that has ever happened to us. I know that sounds odd because this is so hard to do, but I truly believe there is a purpose in all of this. He is here to help us.

We have done a LOT of physical therapy this week. Many of these pictures are from the PT sessions. We have a really fun time with him in the mornings doing this and then he sleeps for the rest of the afternoon. . . I just it's just too much work for him! :) Infact, yesterday he fell asleep right in the middle of PT so we just let him sleep in his boppy on the floor! (There is a picture below)

Here are a few random pictures from the week!

Friday, October 12, 2007

Gavin Likes His Space!

So, people who know me know that I have a bit of a "personal space issue." It seems that Gavin has inherited this from me! (At least this is something we can laugh about!) Last night I went to the hospital and as I was dressing him, he pushed me away and proceeded to stretch out his cute little arms and legs. He stayed that way for a few minutes and it was fun to capture it.

We still don't know much about his cranial nerve issues, and today the doctor told us that it would be two or three months until we get the results from the CHARGE chromosome test. More likely than not, we will go home without a diagnosis. I am okay with that. . . at least it gives room for hope. He is doing much better with his breathing if we consistently suction him, and he is starting to cough. Coughing is a HUGE deal since it means he is learning to manage his lung secretions better. Now if we could just learn to swallow. . . who knew it was such a big deal?

Starting next week or the week after, we will take out the NJ tube from his nose and start feeding him through his G Tube again. The G Tube is looking much better and is healing well. We are still battling the pneumonia, staff and strep infections with antibiotics and when they are cleared up we will be able to have him be IV free! (That means no more needles in the head.)

Jason is flying in to SLC today, and I am getting ready to go get him. Hopefully we will have some fun daddy/son pictures to post this weekend!