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Monday, April 14, 2014
All Pettingill
I took a picture last week of Kimball playing in the dirt. He resembles Scott and Tim SO MUCH, I had to laugh out loud.
Scott, 3 yr
Kimball, 2 yr
Tim, 4 yr
Good Bye Bug
This is the day Lance decided to buy a new car. I don't know why but he's selling the VW bug which is a shame, that's the one car of his I actually liked.
Little Everday MOMents
A few things I wanted to capture from the week that were sweet and also not so sweet.
Kimball and I made a birthday card for Grammy Cox. He's really been into coloring lately.
Yep. See this? I went to get Kimball from his nap and found him buck naked with poo smeared all over himself and the carpet. I really didn't want to spend the evening doing laundry and shampooing carpets but I didn't have much of a choice. Sigh. The picture of him in the bath - he usually loves baths but he knew he was in trouble for taking his diaper off so he pouted while he was in the tub. And in case you were going to ask, he has zero interest in potty training. In fact after he did this I put him on the toilet to teach him where he goes potty and he screamed bloody murder. This is one of those instances that I have to laugh because otherwise I'd just cry.
Oh. Another mess. I've learned that having a two year old just means that you clean up messes all. day. long. I was not happy about the yogurt facial either.
A few days ago I went to the store and found this toy on a great sale. It has cargo boats, speed boats, and a truck with a moving crane and all sorts of moving parts. You put a little water around the outside and various other pits are for sand or dirt. I thought Kimball would love it. Which he did but this is how he used it. Not at all like it showed on the box.
Spring Break
Last week was spring break which meant nothing for us. But we did enjoy play group at the park instead of the mall since the weather has been so springy! Tuesday and Wednesday were both spent outside, earning us the first sunburn of the season and lots of fresh air.
This picture is all of the big kids on the slide
(Friend, Travis, Annissa, Tanyth, Rayn, Ammon, Jacob, and Maddox)
Wednesday, April 9, 2014
Ponderings
It's 2:37am and this is the fifth night in a row that I can't sleep. I'm not sure why, I'm dog tired but I decided to get out of bed and write instead of just lay there.
I'm still not really sure how I feel about Cora's medical results. I guess, it is what it is and I can't change it so I had better make the best of it. When Heavenly Father asks you to stand in rough or strange places then you put you best foot forward. If Heavenly Father asks you to perform strange and bizarre sounding tasks, then do them with grateful hands, regardless. I've been asked to stand here and I am going to make the best of it.
A good Spokane friend of mine, Margo, said that it's ok to mourn the hope or vision of Cora's life that I once had. It made me feel somewhat relieved to hear that because I was feeling slightly guilty thinking that way, even selfish I guess. The second child typically catches on to the things quicker and learns quicker and achieves milestones quicker because they have the older sibling to watch and learn from. Because Kimball was a preemie he was always a tad behind in his milestones - he crawled at 10 months and walked at 16 months. I assumed Cora would be right on the "normal" or even earlier getting to watch Kimball and trying to do everything he does. That certainly won't be the case. Physically she's still like a newborn - she smiles but doesn't laugh or anything audible, she doesn't roll over, her head is still quite floppy, she can't grab toys or play with them at all, she sleeps more than average, etc. just like a newborn. She will be in therapy for years if not for the rest of her life. She may not go to a main stream school, she may be bullied, she may have severe social anxieties and challenges, she will have a difficult time talking. She may not do birthday parties or sleep overs or dances or proms or any of the fun social things that kids and teenagers do. There is a lot she will have trouble doing or simply cannot do at all. But we are intervening early, giving her the best care we can, and seeking the best doctors and treatment available. We love her so much!
I didn't imagine having or raising a special needs child but now that I'm in that category I am even more in awe and amazed at those parents who do it on a daily basis and who do it with more than one child. It is difficult and I'm at the easy stage! It is easier to appreciate and love those children. Not that we love them any more than other children, but it's a different kind of love. We live deeper lives of acceptance. I'm not sure how to explain it exactly. I mean, when was the last time you saw a downs syndrome child and didn't smile? Their happiness is contagious!
I get to experience a joy of something that's a little bit different in my life. I get to find fulfillment and joy in someone who because of their life, brings deeper meaning to worth and life itself. I get to focus more on the simple and pure pleasures of existence.
Elder Timothy J. Dyches: "As we draw near to Him, we realize that mortality is meant to be difficult and that 'opposition in all things' (2 Nephi 2:11) is not a flaw in the plan of salvation. Opposition, rather, is the indispensable element of mortality and strengthens our will and refines our choices."
And so there may not be a lot of things that are normal or average for Cora but I'm choosing to focus on the things she can do. Right now, she has the darn cutest smile and is very social. She loves watching Kimball and anything he does. Her smile is quite contagious and can make you giddy inside. Her spirit lights up a room and just by looking at her, I'm reminded of the simple life we should all live. For a person who is pessimistic by nature, I've been trying really hard to focus on the good.
A few weeks ago I was pondering the events of 2013 and moving while pregnant was definitely a big occasion for us. I came to recognize divine intervention and revelation as to why we are here in Spokane. I thought we moved because of Lance's job offer. But we are really here because of Cora and the job offer was just the vehicle that got us here. Heavenly Father knew way before doctors did that we would need extra care. Lance received that job offer when I was only nine weeks pregnant (and very sick) and there was no way for doctors to determine that early that anything might potentially be wrong. If we wouldn't have moved, we would be in Boise or SLC every other day for doctor appointments and specialists. Right now we have all the doctors and hospitals close by to give her the best treatment. I truly believe that we are in Spokane for Cora.
This was a texting conversation between Bonnie and I the other day:
Bonnie: All I can say is that you are handling this soooooooo much better than I would be. I probably would have set fire to the doctor's office by now. You're a good example of keeping it together.
Me: Oh gosh, you should see me at home! It is hard but it's what I've been handed and I have to make the best of it. Rain or shine. And sometimes we have a lot of cloudy days.
Bonnie: It's ok if it's hard for you at home, or if you have to cry sometimes. That doesn't mean you aren't holding up. It's ok to have a bad day, or many bad days in a row. That is what Elder Packer says, and I trust that he knows what he's talking about. You're doing a really good job though. I can see that you were meant to be Cora's mom.
Me: Oh stop! You're gonna make me cry!
Bonnie: No, it is true though. I've really been touched by your quiet strength. Like I said, I would have burned down doctor's offices by now just out of sheer frustration.
Me: I have been tempted.
This conversation got me thinking about quiet strength and where I draw strength from. I draw a little bit from Lance's arms, a little bit from Bonnie's comments, a little bit from Margo's comments, a little bit from Mom and Dad's comments, a lot from priesthood blessings, and a lot from the Lord. Various people have said things that for the most part I really ponder the conversations I have and draw strength from them. Also, from the lady at the cardio's office whose son had a heart transplant. I'm just so thankful for people all around me, even those that aren't physically around me like our families. I've met and made some great friendships in Spokane. People in our ward, good doctors who actually take time for their patients, friends who watch Kimball while I take Cora to her appointments, therapists who invest time in Cora, strangers that I meet in office waiting rooms, nurses who are genuine and sincere. I draw strength from the scriptures. I draw strength from the words of living prophets and apostles. I thank you, all of those who've taken time to ask questions, give advice, give comfort and reassurance, and share your faith and love!
I truly believe that Heavenly Father answers our prayers through other people and I'm so thankful for the people he's put into my path this past year. I wonder if we all shouldn't wonder every morning, "Who's prayer can I answer today?" and then act on revelation to serve people around us whether we know them or not.
D&C 45:7 For verily I say unto you that I am Alpha and Omega, the beginning and the end, the light and the life of the world - a light that shineth in darkness and the darkness comprehendeth it not.
I'm still not really sure how I feel about Cora's medical results. I guess, it is what it is and I can't change it so I had better make the best of it. When Heavenly Father asks you to stand in rough or strange places then you put you best foot forward. If Heavenly Father asks you to perform strange and bizarre sounding tasks, then do them with grateful hands, regardless. I've been asked to stand here and I am going to make the best of it.
A good Spokane friend of mine, Margo, said that it's ok to mourn the hope or vision of Cora's life that I once had. It made me feel somewhat relieved to hear that because I was feeling slightly guilty thinking that way, even selfish I guess. The second child typically catches on to the things quicker and learns quicker and achieves milestones quicker because they have the older sibling to watch and learn from. Because Kimball was a preemie he was always a tad behind in his milestones - he crawled at 10 months and walked at 16 months. I assumed Cora would be right on the "normal" or even earlier getting to watch Kimball and trying to do everything he does. That certainly won't be the case. Physically she's still like a newborn - she smiles but doesn't laugh or anything audible, she doesn't roll over, her head is still quite floppy, she can't grab toys or play with them at all, she sleeps more than average, etc. just like a newborn. She will be in therapy for years if not for the rest of her life. She may not go to a main stream school, she may be bullied, she may have severe social anxieties and challenges, she will have a difficult time talking. She may not do birthday parties or sleep overs or dances or proms or any of the fun social things that kids and teenagers do. There is a lot she will have trouble doing or simply cannot do at all. But we are intervening early, giving her the best care we can, and seeking the best doctors and treatment available. We love her so much!
I didn't imagine having or raising a special needs child but now that I'm in that category I am even more in awe and amazed at those parents who do it on a daily basis and who do it with more than one child. It is difficult and I'm at the easy stage! It is easier to appreciate and love those children. Not that we love them any more than other children, but it's a different kind of love. We live deeper lives of acceptance. I'm not sure how to explain it exactly. I mean, when was the last time you saw a downs syndrome child and didn't smile? Their happiness is contagious!
I get to experience a joy of something that's a little bit different in my life. I get to find fulfillment and joy in someone who because of their life, brings deeper meaning to worth and life itself. I get to focus more on the simple and pure pleasures of existence.
Elder Timothy J. Dyches: "As we draw near to Him, we realize that mortality is meant to be difficult and that 'opposition in all things' (2 Nephi 2:11) is not a flaw in the plan of salvation. Opposition, rather, is the indispensable element of mortality and strengthens our will and refines our choices."
And so there may not be a lot of things that are normal or average for Cora but I'm choosing to focus on the things she can do. Right now, she has the darn cutest smile and is very social. She loves watching Kimball and anything he does. Her smile is quite contagious and can make you giddy inside. Her spirit lights up a room and just by looking at her, I'm reminded of the simple life we should all live. For a person who is pessimistic by nature, I've been trying really hard to focus on the good.
This was a texting conversation between Bonnie and I the other day:
Bonnie: All I can say is that you are handling this soooooooo much better than I would be. I probably would have set fire to the doctor's office by now. You're a good example of keeping it together.
Me: Oh gosh, you should see me at home! It is hard but it's what I've been handed and I have to make the best of it. Rain or shine. And sometimes we have a lot of cloudy days.
Bonnie: It's ok if it's hard for you at home, or if you have to cry sometimes. That doesn't mean you aren't holding up. It's ok to have a bad day, or many bad days in a row. That is what Elder Packer says, and I trust that he knows what he's talking about. You're doing a really good job though. I can see that you were meant to be Cora's mom.
Me: Oh stop! You're gonna make me cry!
Bonnie: No, it is true though. I've really been touched by your quiet strength. Like I said, I would have burned down doctor's offices by now just out of sheer frustration.
Me: I have been tempted.
This conversation got me thinking about quiet strength and where I draw strength from. I draw a little bit from Lance's arms, a little bit from Bonnie's comments, a little bit from Margo's comments, a little bit from Mom and Dad's comments, a lot from priesthood blessings, and a lot from the Lord. Various people have said things that for the most part I really ponder the conversations I have and draw strength from them. Also, from the lady at the cardio's office whose son had a heart transplant. I'm just so thankful for people all around me, even those that aren't physically around me like our families. I've met and made some great friendships in Spokane. People in our ward, good doctors who actually take time for their patients, friends who watch Kimball while I take Cora to her appointments, therapists who invest time in Cora, strangers that I meet in office waiting rooms, nurses who are genuine and sincere. I draw strength from the scriptures. I draw strength from the words of living prophets and apostles. I thank you, all of those who've taken time to ask questions, give advice, give comfort and reassurance, and share your faith and love!
I truly believe that Heavenly Father answers our prayers through other people and I'm so thankful for the people he's put into my path this past year. I wonder if we all shouldn't wonder every morning, "Who's prayer can I answer today?" and then act on revelation to serve people around us whether we know them or not.
D&C 45:7 For verily I say unto you that I am Alpha and Omega, the beginning and the end, the light and the life of the world - a light that shineth in darkness and the darkness comprehendeth it not.
Alma 11:39 And Amulek said unto him: Yea, he is the very Eternal Father of heaven and of earth, and all things which in them are; he is the beginning and the end, the first and the last;
40 And he shall come into the world to redeem his people; and he shall take upon him the transgressions of those who believe on his name; and these are
they that shall have eternal life, and salvation cometh to none else.
I don't know how Cora's life will be like or even the middle, or heck, I don't even know what tomorrow will be like. But the Lord does know the beginning and the end and I put my trust in Him.
Sunday, April 6, 2014
Videofluroscopic Studies
Cora's pediatrician ordered a videofluoroscopic upper GI study because I mentioned to him that she had been spitting up yellow/green stuff - I assumed either bile or acid. He wanted to make sure her digestive anatomy is right because typically when he hears of this happening, one of the intestines is twisted.
The results: her digestive anatomy is normal and has severe acid reflux.
Cora's speech therapist ordered a videofluoroscopic swallow study, this time of her mouth/throat area. I mentioned to her that when she eats I can hear a lot of congestion in her chest and nose but it's only when she eats.
The results: she is aspirating her milk and has severe acid reflux.
Hmmmmm....no wonder she hasn't gained weight for two months! Luckily, she does not have pneumonia or any other infections and we don't have to see a respiratory specialist. I have been very concerned about her not gaining weight, she's so little and skinny. Someone suggested I take her to see a nutritionist which is fine but I already know that her reflux is to blame. She's had another reaction to the second medicine they prescribed her so I have no idea how I'm supposed to help her gain weight or how to help her eat better. Whatever she eats always come back up. Poor girl! We've dealt with this issue since she was born so I'm pretty frustrated and at a loss of what to do for her. I made a few phone calls this weekend so I'm hoping to get some answers soon, even if that means taking her to a pediatric GI doctor.
The results: her digestive anatomy is normal and has severe acid reflux.
Cora's speech therapist ordered a videofluoroscopic swallow study, this time of her mouth/throat area. I mentioned to her that when she eats I can hear a lot of congestion in her chest and nose but it's only when she eats.
The results: she is aspirating her milk and has severe acid reflux.
Hmmmmm....no wonder she hasn't gained weight for two months! Luckily, she does not have pneumonia or any other infections and we don't have to see a respiratory specialist. I have been very concerned about her not gaining weight, she's so little and skinny. Someone suggested I take her to see a nutritionist which is fine but I already know that her reflux is to blame. She's had another reaction to the second medicine they prescribed her so I have no idea how I'm supposed to help her gain weight or how to help her eat better. Whatever she eats always come back up. Poor girl! We've dealt with this issue since she was born so I'm pretty frustrated and at a loss of what to do for her. I made a few phone calls this weekend so I'm hoping to get some answers soon, even if that means taking her to a pediatric GI doctor.
MRI Findings
On Tuesday we met with Cora's neurologist to review the MRI. I was really nervous for this appointment because I knew there were "further abnormalities" with her brain and I wasn't sure I wanted to know all of the details. It's pretty scary going in to hear specifics on something like that. I made sure Lance was with me, I needed an extra set of listening ears and I needed the support.
Dr. Reggin showed us all the pictures of her MRI and then showed us the areas that were abnormal. The cysts she had when she was born are now gone. She has hypoplasia of the corpus callosum which means the lining is thin (the white matter), and she has a deviation in the ventricular wall which was caused by the cysts. The findings are nonspecific which means there isn't a syndrome, disease, or name as to what she has. These are abnormalities that are commonly found in developmentally delayed children.
That's it. She will most likely be delayed for the rest of her life but we don't know to what extent. The Guild School found her to be developmentally one month old when she's four months old right now. Later when she's four years old she could only developmentally be one year old, etc. etc. Obviously the older she gets, the bigger the gap. It's just a wait and see kind of scenario. There's no way for any of the doctors to determine or predict what she will be like in five or thirty years. We wait and see right along with them. We do know that it affects all aspects of her life. According to the printout Dr. Reggin gave us, she could have the following neurological problems:
I have lots of thoughts and feelings on this whole thing but I have a limited window for writing. Until next time.
Dr. Reggin showed us all the pictures of her MRI and then showed us the areas that were abnormal. The cysts she had when she was born are now gone. She has hypoplasia of the corpus callosum which means the lining is thin (the white matter), and she has a deviation in the ventricular wall which was caused by the cysts. The findings are nonspecific which means there isn't a syndrome, disease, or name as to what she has. These are abnormalities that are commonly found in developmentally delayed children.
That's it. She will most likely be delayed for the rest of her life but we don't know to what extent. The Guild School found her to be developmentally one month old when she's four months old right now. Later when she's four years old she could only developmentally be one year old, etc. etc. Obviously the older she gets, the bigger the gap. It's just a wait and see kind of scenario. There's no way for any of the doctors to determine or predict what she will be like in five or thirty years. We wait and see right along with them. We do know that it affects all aspects of her life. According to the printout Dr. Reggin gave us, she could have the following neurological problems:
- Delays in achieving motor, language, and/or cognitive milestones
- Poor motor coordination
- Sensitivity to particular tactile sensations such as food textures and touch
- High tolerance to pain
- Difficulty with multidimensional tasks such as using language in social situations, complex reasoning, creativity, and problem solving
- Challenges in social interactions including lack of awareness of the thoughts and feelings of others, misunderstanding social cues such as facial expressions and tone of voice, limited sophistication of humor, and difficulty imagining potential consequences of behavior
- Limited insight into one's own behavior, social problems, and cognitive challenges
I have lots of thoughts and feelings on this whole thing but I have a limited window for writing. Until next time.
Wednesday, April 2, 2014
17 Year Old Miracle
Monday was our long awaited cardiology appointment with Cora. It's her third checkup and they were going to tell us if she needed heart surgery. She had another limited echo and was a little wiggly but did great. Then she saw the doctor and reported good news - no surgery! Her pulmonic stenosis had greatly improved, surprising the doctor. She left to double check the echo, it's not very often that this happens so she wanted to be sure. Cora's ASD is still there and still moderate in size but again, they won't do surgery on that until she's at least 30 pounds. A good appointment! We don't have to go back for four months, yay!
After the echo I was in the waiting room waiting to be seen by the doctor. Cora was a little fussy so I was trying to get her to sleep when a mother came in from the doctors door. She sat in the chair next to me and I started a small conversation and asked if she was here with her children. She told me all about her son.
Her son is 17 years old and has had heart defects since 6 months of age. He's had to undergo numerous surgeries and at 13 years old had a heart transplant. I was shocked. As she was speaking I got teary eyed and I somehow managed to ask, "How did you endure all of that? She's (pointing to Cora) only 4 months old and I'm about to go crazy!" She said she just takes it one day at a time. We had such a nice conversation and her son came through the door while he waited on the doctor so I was able to meet him. He had a small frame and was a little bit smaller than an average 17 year old but he was happy and smiling so big. I could tell he'd been through a lot and still had a few challenges ahead of him. We chatted a bit longer, she and I both cried together. As they were leaving she got out her husband's business card and on the back wrote down her and her son's names and her cell phone number. She gave me a tight hug and said, "If you ever need to talk or asked questions or anything. at. all. you call me. Please, please call me!"
I was so touched! This woman and her son had been through so many trials, so many ups and downs. I was thankful to meet her son and look into his eyes. He was filled with light and life. He gave me so much hope. I was not prepared but was so thankful for this experience!
After the echo I was in the waiting room waiting to be seen by the doctor. Cora was a little fussy so I was trying to get her to sleep when a mother came in from the doctors door. She sat in the chair next to me and I started a small conversation and asked if she was here with her children. She told me all about her son.
Her son is 17 years old and has had heart defects since 6 months of age. He's had to undergo numerous surgeries and at 13 years old had a heart transplant. I was shocked. As she was speaking I got teary eyed and I somehow managed to ask, "How did you endure all of that? She's (pointing to Cora) only 4 months old and I'm about to go crazy!" She said she just takes it one day at a time. We had such a nice conversation and her son came through the door while he waited on the doctor so I was able to meet him. He had a small frame and was a little bit smaller than an average 17 year old but he was happy and smiling so big. I could tell he'd been through a lot and still had a few challenges ahead of him. We chatted a bit longer, she and I both cried together. As they were leaving she got out her husband's business card and on the back wrote down her and her son's names and her cell phone number. She gave me a tight hug and said, "If you ever need to talk or asked questions or anything. at. all. you call me. Please, please call me!"
I was so touched! This woman and her son had been through so many trials, so many ups and downs. I was thankful to meet her son and look into his eyes. He was filled with light and life. He gave me so much hope. I was not prepared but was so thankful for this experience!
Just Between Friends Sale
My good friend, Liz, told me a few months ago about a consignment sale called Just Between Friends. It's basically a mega garage sale in a ginormous warehouse full of baby/children items. Liz had to back out last minute but Chris and I went together. We made a night of it and got there in time to stand in line for 15 minutes in the cool March air before they opened the doors. Once the doors were opened it was like Target on Black Friday, pretty crazy with women running everywhere and arms full of goods. Chris and I both had a list of things we wanted, mine included: table/chairs, backpack, stroller, books, 4T clothes, bike, and legos.
Chris and I split up and quickly found all of our stuff, then waited in the checkout line for about 45 minutes and we were toward the front of the line. It was crazy busy. I scored all the items on my list minus the clothes and books that I didn't want to sift through, and the bikes were way overpriced.
I love the table and chair set because it's identical to the one I grew up with.
Again, once I got out the phone for a picture Kimball wouldn't smile and was mad I wanted a picture but this is his backpack, never been used.
This was taken yesterday at my playgroup at the mall, Kimball wasn't looking because he was watching the train that taunts little kids as it goes through the mall (upsetting parents who refuse to pay $3.50 for a short train ride). AND I actually WALKED to the mall! Yep, that's right, this mama hasn't exercised in two years but I didn't have a car so I used my new stroller and walked the 1.5 miles to the mall. It was a beautiful morning and a great little stroll even if I did end up sweaty, stinky, and out of breath.
Bits & Pieces
One of my biggest pet peeves is getting behind on the blog, it builds so much anxiety in me and I go crazy! So here is a bunch of random stuff.
Kimball and mommy - my little pal and Daddy's best bud
Goofy Cora!
Kimball was having a fruit snack and came running into the room and managed to muffle "all gone." No kidding, you shoved them all in your mouth! And as soon as I got out my phone to take a picture he got mad that I had the phone. But it was funny nonetheless.
We were making Double Chocolate Drops and evidence of the yumminess was on his eyelids.
Sweet girl
Silly girl who looks so much baby Kimball!
Chatting with mommy dearest
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