Thursday, November 19, 2009

Surgery Day

This handsome little guy will be receiving his cochlear implants tomorrow. He will be in surgery for 5-6 hours. Please keep him and the surgeon in your prayers. We love you, Luke so very much!

“And whoso receiveth you, there I will be also, for I will go before your face.

I will be on your right hand and on your left, and my Spirit shall be in your hearts,

and mine angels round about you, to bear you up.”

Doctrine & Covenants 84:88

Tuesday, November 17, 2009

The Story of the Parentheses

This picture is of Jack, but this story is about Luke. I love this picture.
The first weekend of August 2008, Luke was given a beautiful blessing from Aaron at church. He was given his name of Luke Newel Chambers, which I love and he was blessed with many wonderful things. Towards the end of the blessing, Aaron said something along the lines of, "you will face physical hardships in your life". I remember making a funny face when I first heard this--a face like what's that supposed to mean, he's perfect, nothing will happen to him. Later on that night, as we were typing up the notes from the blessing I asked Aaron about it. He said that he didn't have any specific reason why he said that, but that it could just mean that he will have to work hard/physical labor, etc. I was somewhat sufficed, yet I still didn't like the thought of my sweet baby Luke dealing with any physical hardship.
With the final draft of the blessing, based on notes taken during the blessing and Aaron's good memory, Aaron typed the now infamous phrase in parentheses next to physical hardship---(not health) to make me feel better.
Life is full of irony and learning. Looking back I realize that it is an absolute ridiculous expectation to think, "I don't want anything to happen to my child"--Anything??? Things happen to us all--it's called living. We are all faced with trials and hardships, some more obvious than others. The deepest among them most likely the most unseen.
Instead the expectation for me has changed to I want my children to face their trials in life with strength, faith and courage based on their testimonies of the Savior and the plan Heavenly Father has for them and also based on their personal confidence in their abilities and the love that their family has for them.
They will each undoubtedly face trials--haven't we all? Yet, this experience has taught me so much about how I want to deal with things that come as a burden and/or hardship to my children--I want those things to make them stronger! I want them to cleave to their testimony, and have a solid level of confidence in who they are and what family they are a part of.
Luke has proven his strength to me already in so many ways, however I know that he will need to continue to be strong throughout his life. Will he have continued hardship? Probably, but nothing that he cannot face and get through with the help of the Lord and his family. Again, the same is true for each of our children and us too.
It's maddening to try to think of everything that may lie ahead, but I do have a sense of peace that there is more joy than sorrow to be had in this life. There is more sweet than bitter. And there is certainly much, much more strength to Luke than hardship.

Thursday, November 12, 2009

A Good Crazy!!!

Don't you absolutely love those blog posts people do where they take a picture of their huge pile of laundry or how all their kids have messy faces by the end of the day, etc. I know those posts hardly exist, but this one is for all you reality lovers!
I am going CRAZY! 1. I will never home school--kudos for everyone that does, but I will not every do it, yet another lesson learned from this whole experience. 2. Bad sign when I looked at Aaron the other night and gasped when I realized I hadn't showered in three days--yikes! 3. Luke's nap time is the only time I am not sitting on the ground with him playing with toys, playing with toys, playing with toys while the others are running, running, running around me!
The list goes on, but remember this is the good kind of crazy--there is such thing. This is the kind of crazy that you constantly remind yourself that things won't stay like this forever and you will appreciate life's little blessings more because of this. One last thing on my list--if the pain in my right rib cage doesn't go away any day now I may just be signing my own contract saying I will never be pregnant again!
And just because:I never know what Adam will be wearing or not wearing I should say. Everyday is a new adventure!
An update on Luke: His strength continues to increase everyday--he is pulling himself up and standing while holding on to the couch, etc. He is climbing up on the couch--which keeps him on my constant radar. He is saying "ball" as he throws a ball. And continues with his normal babbling and waving, etc. He wore hearing aids for a week with no results--they were annoying to get in, but he didn't really touch them once they were in. We did a sound booth test with the audiologist while he was wearing the hearing aids and I may have sustained some ear damage from the noises they put through that thing (i'm joking), but he still did not have any response. This is depressing, but also adds to your assurance that the surgery is the right decision. We will have our final series of testing on Monday to know for sure of how/when to proceed. He is happy and doing really well--his laughs and hugs really do make it all worth it---see, I'm not really crazy!

Sunday, November 8, 2009

The State of the Children....

People have asked me about how the other kids have been through all this. My answer: amazing! Now for real honesty: it has been hard on them, but overall I am really impressed with how they have been.
They have not been back to school and we aren't sending them for a while longer because it is so important that Luke doesn't even get a cold or anything before his surgery, which is scheduled for the first week of December. Also, we need to gather more details on his recovery time, etc.
Julia and Jack made these adorable posters for Luke while he was in the hospital:I don't know if you can see Jack's all the way, but it says things like, "don't let the doctors make him freek (freak) out too much."
Just two nights ago things really hit Jack and he just wanted me to hold him and he just sobbed and told me how much he loved Luke and wondered why he would have to wear "hearing aids" for the rest of his life. It was so sincere and tender--I tried my best to explain everything to Jack, but mostly I told him that it was ok to cry and that it was sad, but it won't be sad forever. My shirt was soaked from his tears and it just made me cry more.
Julia has had similar experiences. She has asked why many times and how she wishes so bad that this would have never happened. They just both love Luke so much and it has been hard to see them sad, but also it's been a good opportunity for us to explain a lot about life, having faith, etc.
While Luke was in the hospital, Julia, Jack and Adam loved staying with grandparents--we are so blessed that our children have two sets of wonderful grandparents that love them so much!
Even though they were missing out on school, sports, etc. they managed to have a lot of fun...And these are the things that just Aaron and I managed to sneak them away for: U football game, visit to Temple Square, a trip to Build-a-Bear. This doesn't even show all the picnics, park visits, shopping, etc. that grandparents spoiled them with!
I know that this is a learning experience for us all, but with that comes a lot of growth. One of many things that brings me peace is that in many ways I feel like this will make my children even closer than they already are--they will love and support Luke through this and he will in turn show them love and inspire them.
By the way, he is doing really well--crawling, and just about sitting up on his own (until he realizes I'm not right there!)

Tuesday, November 3, 2009

A Different Halloween

This is on Monday night, October 12th.
This is on Saturday, October 31st. The dates between are when our lives were turned upside down and changed forever---in some sad ways, some inconvenient ways, but mostly in ways that change perspective, increase faith and give a sense of undeniable gratitude.
I have to be honest, I've never really liked Halloween--it's just not my thing. I don't like creepy things, the kids are always cold and on a sugar high, etc. But, this Halloween was very different. This Halloween we were able to bring Luke home after a 17 day stay in the hospital. What a joyous Halloween!
And here is the story: From Monday, Oct. 12-Wednesday, Oct. 14, Luke a slight runny nose and acted a little whiny, but nothing alarming. On Wednesday the 14th, he woke up from his nap a little earlier than normal and had a fever of 104. I gave him Tylenol and what initially concerned me is that he was acting really lethargic & he was throwing up. So, I got him an appointment with the after hours clinic at our dr. office in Logan. We went in that night around 7:30 and the dr. quickly concluded that Luke had swine flu. I wasn't as sure, so I asked to do the conclusive 36 hour test. They agreed to do the test, but still sent us home with Tamiflu. By Thursday, I was more worried about Luke. He was increasingly more uncomfortable and he was throwing up--a lot! By the afternoon I called the dr. office back and said I thought he was dehydrated because he hadn't held anything down for 24 hours. My dr. said to come back in and they would admit him at Logan Hospital for the night to get him rehydrated with an IV.
So, we went in, he still had a high fever, it went above 104. They got him on the IV and throughout Thursday night, he was miserable. He didn't sleep at all. He would fall asleep for 3-5 minutes and then just cry and toss and turn and shift his body all over--I kept trying to hold him, rock him and he was just so uncomfortable.
Friday morning, Oct. 16th, our Dr. came in to check on Luke and said that the results came back the he did not have swine flu, but he still thought it was probably just a bad virus. I told him about the night and how the only way Luke would get comfortable in my arms was with his head completely slanted back with his chin straight in the air. As I was talking, the dr. just stopped me and his eyes looked like a deer's in headlights, something clicked in his brain. He later told me that all of Luke's symptoms from the last 3 days just flashed before his eyes and he realized that he had meningitis. (the first of several blessings along the way!) They did a spinal tap and they saw instantly that the spinal fluid was cloudy--not good. The dr. kept telling me that it was more than likely viral meningitis, that's a lot more common, etc. They started on antibiotics through the IV just as a precaution in case of bacterial meningitis. He told me it could be up to 24 hours before they knew if any bacteria was going to grow from the fluid.
40 minutes later, our room phone rang and it was the dr. saying that it had already come back bacterial and he had already been on the phone with Primary Children's to know exactly how to proceed, etc. I was stunned and the first thing I said was, "Is he going to die?" The dr. said, "Cortney, he might." The air was literally taken out of me, I couldn't breathe and then I just started sobbing.
The next hour was just making arrangements for Life Flight to come get Luke and take him to PCMC. He was was there 20 minutes after they arrived. One of the many gut wrenching experiences of this whole ordeal was watching them take him away in the helicopter and not being able to be with him. The drive to Salt Lake was the most anxious, longest, most horrible car ride I have ever had!
So, to spare you all the details, I will just give a quick overview of his stay at PCMC. He got there on Friday, Oct. 16th and left Saturday, Oct. 31st. From Friday to Sunday, he was in the ICU--he pain level was extremely high during this time and it was so hard to see him this way. They were preparing us for any possible outcome. It was an extremely emotional and hard time.
There are too many details to go into for the next two weeks. I won't give you a play by play of PICC lines, IVs, the pure torture he went through, etc. But, very long story short---he was on an EEG for over 24 hours, he had two MRIs and two CT scans of his brain during our stay there and all came back looking normal, with no signs of brain damage, fluid collection or residual pockets of infection. During this whole period, there were many ups and downs. He was extremely swollen for several days from the heavy antibiotics and his sodium levels. Then when that was finally taken care of, he had fever spikes for several days that needed to be under control before we could go on, etc.
On Wednesday, Oct. 21, Luke was given a hearing test called the ABR (Auditory Brainstem Response). One thing that we quickly learned is that bacterial meningitis can often have an adverse effect on your hearing. At this point, we were just so overjoyed to have our son still with us and that there was no sign of brain damage, etc. that we were willing to accept any other obstacles. Well, that is just what we were greeted with--an obstacle.
During this hearing test, Luke did not have any response on either ear up to 95 decibels. This test was repeated two days later with the same results. The infection had completely taken Luke's hearing from both ears. It was the most heart breaking news I have ever had as a parent or just ever in my life. I love this precious son so much and to hear that he would have something to deal with in his life that would make life more difficult was so hard to bear.
With the news, we were also told that he was a prime candidate for Cochlear Implants. In coming weeks, I'm sure I will blog more about this, so you can google it for now! In essence, in the coming weeks/months Luke will go through the implant process that will not restore his hearing, but provide a way for him to hear. It is not the same as natural hearing, but it is wonderful technology that will provide a lifetime of hearing.
We have been totally reassured that his long term prognosis is wonderful--he will have a successful, fulfilling life that is just as normal as you or I.
We are so incredibly blessed to have Luke--we have seen several miracles along the way through this whole situation. At times I feel completely emotionally drained and at others I feel so spiritually fed. Luke is an exceptional child who is strong and just so darling! He is laughing and playing again, interacting and funny. We still have our son & we will support him through this and we will have the same high expectations of him that we do for all of our children. I am confident that he will achieve great things in life & I am thrilled to be a part of it!