Wednesday, December 30, 2009

Progress





I am so happy to say that Luke is making some progress, although it is slight, I see a definite improvement in the last two days. He will wear the processors for over an hour at a time now. When he takes them off, he hands them back to me with a smile, like he knows that I am going to put them right back on. Most of the 50 times a day of putting them back on, there is less of a fight. And yes, 50 times is much better than 200 times!

We still haven't figured out how to keep them on in the car, but I am going to try some different beanies for him to wear.

I am still not completely sure what he is hearing with them on, he doesn't seem to respond to everything. But, he definitely turns his head to sounds like knocking on the wall or loud abrupt sounds. So, either he is not bothered by just the normal sounds of the tv or all of us talking or he is not completely picking that all up. Either way, I am just thankful he is tolerating wearing them more and more everyday. Wahoo!

Monday, December 28, 2009

Now for some pictures!











I love this picture of Jack & Adam--Adam's messy hair and all! These two are so fun together. Adam has been so hilarious lately. Here's a sampling of his comments:
After a PB & J sandwich: "Uh, mom I am all sticky and jammy"
After waking me up at 4:00 am to come lay by him in bed, he pats his pillow and says, "Here's a great spot for you, you will fit right here."
The two mornings when he wakes up, he yells out, "Hello, Hello, is anyone there?"

Christmas morning was fun, Luke probably thought I was crazy waking him up at 6:00, but he loved his presents. Julia, Jack and Adam were anxiously awake at 6:00, the earliest we told them they could wake us up at!

I am realizing I have no idea what order these pictures will show up, so hopefully it will all make sense!

Tonight the Christmas tree comes down and while that's always a little sad, I am looking forward to a great new year. This year has taught me a lot---maybe that's for another post! Mostly, I am so thankful for the gospel of Jesus Christ, a very supportive husband and four beautiful children. And wonderful families on both sides that have helped us so much in the last few months.

Saturday, December 26, 2009

Pictures or Thoughts?

I have been horrible at blogging lately, I apologize. My dilema? I am not great about taking pictures and a big part of blogging is pictures. We did take lots of pictures on Christmas. I will have to download those by Valentine's Day---adjusted expectations, isn't it great?!

The truth is that I have been incredibly overwhelmed--even typing that doesn't seem sufficient in describing how I feel. So, here's the rundown:
*I go through a daily (most days, hourly) swing of emotions between so thankful and at in awe of how blessed I have been to the other extreme of feeling terribly picked on and not understanding how I can possibly deal with what is at hand. I am cry just thinking of this constant swing---sound crazy? Well, I actually believe in a little craziness, I think it teaches us to be sane!
*Another daily swing of feelings is the lovely good ole fashioned mom guilt. I feel like you know what when I strap Luke into his high chair to watch Blue's Clues or Curious George in silence. I feel like I am neglecting him by going to the bathroom or loading the dishwasher. This is of course after I have put his implants/hearing aids/processors (still haven't figured out what they are called!!) on 100 times and he has ripped them off again and again and again. To say this tests my patience is the biggest understatement of my life! So, I swing from guilt to self pep talks telling myself that all I can do is my best and my best is good enough and that Luke knows that he is loved, etc., etc.,
* I have heartburn, I ache and I feel huge, yet in the quiet of my heart I am so excited to see this new baby boy! I am so thankful that the Lord has allowed me to be unrealistic and almost ignorant about how hard it is going to be after the baby is born so that I can still hold on to my motherly excitement---I really do feel excited---thanks in part to a fleeting memory of how I really feel after a baby!
* There are toys everywhere in our house right now---everywhere: every room, every solid surface, behind every door. At least we finally got all the packaging throw away, including all those annoying twist ties that hold down every one of the hundred parts down.
* I haven't cooked a real meal since Thanksgiving, and that was even with a lot of help. So, I am putting a roast in the crock pot tonight to make myself feel better.

So, I will stop with the list, since I could go on and on!!!! In summary, Luke is an absolute miracle. He had his implants activated on Dec. 17th, but since then it has been a real struggle keeping them in place on his ears. He has made small progress, such as: when he takes them off he just hands them to me nicely instead of throwing them across the room. He is a doll, that is why so much of this is so hard. It's a constant judgment call of how hard to push him to wear them, like a contest between his immediate comfort and his long term success.
For every struggle I think and pray for an accommodation to make it better. And, thankfully I have thought of a few. I do have hope that things will get easier and at some point he will be aware of the association between wearing them and hearing.

Until then, I will be thankful for the moments like today when he just hugged me, put his head on my shoulder and both arms around me and hugged and didn't let go and did it again and again, smiling. He is such a sweet soul!

Well, I am off to bed, I don't normally stay up until 10:30, see I'm not the normal supermom blogger that stays up all hours of the night with all her projects, nope I usually go to bed by 8:30---I know gasp: a post with no pictures and mostly complaining and admitting that I go to bed without everything or maybe even anything on my list done!

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!

Tuesday, October 13, 2009

Moments...(Have I already had that title? I'm getting lazy!)

I have had so many moments in the last few days that have felt so happy! My children have been doing cute things that just make my heart smile. I don't care if that sounds cheesy, it's true!



Jack wrote this song on Sunday. Ok, I know that it is only one sentence, but he's six and only been in piano for a few months. He wrote the notes to go with each word---so cute!

And I've realized that I have enough room on the counter for one more monkey boy!

Even if they do help themselves to a little too much dough (think fistfuls)!

Julia won her first trophy last night for soccer. She was thrilled! Jack burst into tears and Julia went on to explain that as you get older you just get more awards...to which Jack replied, "Older, Better, Older, Better---I get it!"
Jack went into his room to chill out about it and Julia came down and said that she had given Jack a dollar to make him feel better. Very nice of Julia, but not cool with me!
So, I went up to Jack to have a famous mom talk and told him how much I loved him and how wonderful he is and then said, "Now Jack, do you really need people to give you money to make you feel better?" And he said, "Only sometimes Mom".
I then explained that he didn't and told him to take his time to be ready to go down and give Julia a hug and congratulate her on her trophy. I told him he needed to wait until he really meant it. One thing I love about Jack is that he took this totally seriously. He waited about 45 minutes and came downstairs and gave Julia a big hug and said, "Julia, good job on soccer, I'm really proud of you". It was sincere & darling!

Friday, October 9, 2009

It's a....


Let me just begin by saying: look at those lips, look at that nose--so cute! Or should I say handsome?! We are having what appears by all accounts to be a healthy, strong and most definitely BOY baby!
Some how I feel the need to stand up and accept an award in advance for being the mother of four boys! But, honestly once I saw his face, we bonded! I know that it will be a lot of work, but such a blast too!
In case anyone is wondering, Julia is doing just fine--she had her moment of shock, but then she was just as happy as me to see that cute face! We went shopping and to lunch, just as it should be for a mother and daughter!
And I will leave you with a little game of peek a boo:

Thursday, October 8, 2009

Anxiously Awaiting...

Tomorrow we find out if we are having a BOY or a GIRL! Let me rephrase that: I will not get up off of that ultrasound table until they tell me for sure what we are having---no private/shy babies allowed!

And there's nothing like a terrible head cold to make the week just fly by, feeling like there's a bomb inside my head ready to explode is such a pleasant way to spend the week. But, there is truth to every time you get sick you are more grateful to be healthy!
Julia has gladly accepted the assignment of making all the phone calls tomorrow to let everyone know what the big news is. I'm pretty sure that you will be able to tell the outcome within the first 5 seconds just from her tone of voice. Do you detect that someone just maybe wants a sister just maybe a little bit???

Wednesday, September 30, 2009

Let it Snow!

Yes, we woke up to snow this morning and it was still snowing! So, this isn't a full snowman, more like a snowhead, but it's still SNOW in SEPTEMBER!

Friday, September 25, 2009

Bear Lake











We had a wonderful week in Bear Lake--The air was crisp and there was fun all day, everyday from mini golf to bike rides to swimming to going to the beach to the playground---all so fun. Picture details: Jack hunting for treasures with cousin Tyler on the beach, Luke's licorice face was a daily occurrence & yes, that is my pregnant belly saying hello in the family picture!

Double Rainbow

Beautiful scene in Grace with handsome Luke to present it!
Normal scene in Grace--Julia & Jack catching a bug with a ladle!

Tuesday, September 1, 2009

A Quiet Morning...


Joy School officially started last week, but this is the first time it was not at our house, so this feels much more official to us! Adam inherited Jack's preschool backpack, a rite of passage around here!
He was very excited and now Luke or I don't quite know what to do with the quiet!

Saturday, August 29, 2009

Jack-a-bub


My sweet Jack--never grow out of this! You are such a joy!