Saturday, August 30, 2014
Monday, August 25, 2014
Saturday, August 23, 2014
Letter to Erin
Well, I have not been very good at blogging. This is my journal, so I need to really try and record what is happening.
I got a letter from my oldest friend. We met in the first grade and have been friends ever since, 35ish years for those of you counting.
I haven't been in touch since our holiday letter, so I filled her in on our last 6 months. I thought it might be good to record it. So, this is basically a recap.
===============================
Karla
I got a letter from my oldest friend. We met in the first grade and have been friends ever since, 35ish years for those of you counting.
I haven't been in touch since our holiday letter, so I filled her in on our last 6 months. I thought it might be good to record it. So, this is basically a recap.
===============================
Wednesday Aug. 13, 2014
Oh Erin!
I loved getting your letter in the mail today. It was like a visit with an old friend. Spencer kept interrupting my reading with question like, “What do snails eat?” and “How do fireflies glow?” So, I snuck off to the porch to continue our conversation :)
It sounds like you have had so many adventures and I hope that they have been good adventures and any darkness has faded. It has been a whirlwind here, let me tell you (and I will.) But first know that you are first best friend always, it has been 35 years and that will never change.
I am so sorry to hear about Mona. I know she was a family member. You brought her with you to my wedding (although I think she stayed at the hotel.) When Milo (Dave’s pug) died about a year after we were married. I was a wreck. I just sobbed and missed that little face. I am sure you miss Mona too. So, I have been thinking about you. I wanted to send a card, but couldn’t find the right one. So, I guess you get a letter instead.
This year has been filled with our own adventures. We got our approval to travel to China to bring home Ella on New Year’s Eve and basically it has been non-stop drama, joy and angst since then.
When Dave and I went to China to meet Ella, we knew immediately after seeing her that she had some severe medical needs. We were told she had epilepsy, but seeing her in person it was clear it some more then that. I immediately thought she had cerebral palsy. She could not balance, she had limited movement with her hands and walked with a very affected gait. She could not dress herself, she could not use the bathroom alone, she could not brush her teeth or her hair. It was quite a shock.
We had Ella with us for the first day and were told if we wanted to change our mind we had 24 hours. Dave and I knew that she was ours and we had no hesitation about completing the adoption and brining her home. We just had a lot of unknowns and were willing to take the leap.
While we were in China, Luke (our 2 year old) ended up in the hospital with breathing problems. Dave went home and I stayed in China for about a week to finish up the paperwork. While Dave was home he was looking for new homes for our family and sending me links.
We had a very frank conversation before he left. Ella had some great difficulty with stairs. Our home was a 2-story with all the bedrooms on the second floor and a place for a playroom in the basement. Without a doubt bringing Ella home meant we needed a new home and a floor plan that was accessible for her.
We had lived in our Herriman home for 8 years. We had great friends and it was a wonderful place. Once Ella came home she fell on or down the stairs 2-3 times a week. It simply would not work. We spent about 4 weeks getting the house in shape; painting, fixing cosmetic problems, replacing a cracked window. . . . Then listed our home for sale in February.
We found a perfect house in March. It was still under construction but had main floor living (4 bedrooms on the main floor and 3 in the basement.) I just fell in love with it. It is about 4100 square feet (our Herriman house was 4200.) The size, location and floor plan were perfect. So we made the leap and bought the house. We moved in in April. We still needed to sell the Herriman house. That was all sorts of stressful. But I was not super crazy about it, I just knew it would work out. Dave and I both fasted and prayed before we made the decision. I felt so much peace and that peace carried me through.
We got an offer on our home the first of June and closed the end of July (with all sorts of crazy drama in-between that I wont trouble you with.) In the end the house sold and it all worked out they way it should. It feels good to be settled into our new home. It is simply perfect for our family, and not just Ella’s mobility needs.
When we got home from China the first thing we did was see medical specialist to see what we were facing. We took her to our pediatric orthopedic surgeon and she has a twisted thigh bone, (AKA: femoral anteversion). It basically impacts the way she walks and contributes to her awkward gait. The good news is that more kids grow out of this by the time they are 10, so we are hopeful time will help this issue.
We also took Ella to a pediatric neurologist that specializes in epilepsy. Ella does not have epilepsy, at all. However the doctor thought she had cerebral palsy (CP). Because of her balance, muscle tone and tremble (in her fingers.) We had an MRI, and it came back perfect. He said he was stumped. Ella has all the symptoms of CP but her brain was “beautiful” and was not causing her issues. It was great to hear that our daughter does not have CP! Then the other thought occurred to me, if not CP, what? It could be more scary then that. At least with CP I knew that to expect. The good thing about CP is that it is not progressive, what you see is basically as “bad” as it gets.
On to another specialist (and did I mention we were selling our home and moving while all this was happening?! And doing the updated paperwork to bring Zoe home?) The next specialist was focused on neuro-muscular disorders in children. She gave me a list of things it could be. . . that was totally jaw dropping. (insert deep sigh here.) Wow, we could be on our way to a permanently disabled -wheelchair bound- child that will not progress cognitively. Dave and I spent a lot of time thinking about what it could all mean.
Last week we got more tests done and thankfully the most extreme scenarios were ruled out. As of right now (and I have to say ‘right now’ because we have been though a list of things that keep changing) It looks like she has dystonia. I had never heard of it before Ella came to us.
Dystonia is often misdiagnosed as CP. They do have the same symptoms, but CP is caused by damage to the brain and dystonia, it seems, is caused by the way neurotransmitters communicate with the muscles. However, CP is not progressing and Dystonia is. But the silver lining is that there is medicine that can treat some of the symptoms, but not the underlining cause. It is same medication that is used with Parkinson's patients.
We are waiting 2-3 weeks for final confirmation from the lab work. It it is indeed dystonia, Ella will start on the medication and we take it from there. Ella is also starting occupational therapy this week which should also help. Although Ella has really progressed since coming home. She can eat by herself, dress herself, use the bathroom and basically do anything a 3 year old should. Her balance has not improved at all, and Luke our 20 pound 2 year old can (and does) push her over with a slight push. Our new home is perfect for her (and all of us.) The stairs have a landing half way down and I am happy to report no injuries since moving in. I think in our old home it was just a matter of time before a bone was broken. . . or worse.
In the midst of all the medical appointments for Ella our boys also gave us a run for our money. Jacob got the official A-OK from the orthopedic surgeon to stop wearing his brace (for his club foot.) Jacob also swallowed a coin that was lodged in his esophagus. That was a one-way trip to the ER at primary children’s hospital to have it dislodged. Spence was sword fighting Jacob and got a cut above his left eye. . . he got 4 stitches for that one. Luke also was at the insta-care at least once a month this winter for breathing treatments (when the Albuterol breathing treatments we did at home weren’t enough.) I was at the doctors at least 3 or 4 times a month between January and July.
As I am writing this it sounds like I am whining. . . I hope you don’t hear that tone in my voice. I love my kids so much and this is just part of the gig right? It just is what it is.
We also welcomed Zoë home in June. She is my joy and my song. I just adore her. She is the best baby by far. She sleeps through the night, she eats well and smiles and coos and is simply perfect. However, she wouldn’t be a true Stirling without some medical need, right? Hee Hee.
Zoë has torticollis and plagiocephaly, basically she has a stiff neck and a flat side of her head. We have been doing physical therapy with her for 6 weeks and both are improving. However there is still a 50/50 chance she will need to wear a helmet to correct the shape of her head. We should be able to tell in the next 4 weeks if that needs to be the next step.
Never a dull moment :)
Wow, I hope I didn’t just bore you talking about my kids the whole time. It’s just that, that is center of my universe. They always have been my focus, but now that there are 5 it seems pretty much mom-time non-stop. I know it will pass by quickly and I waited for so long to have my family. I just want to enjoy it all, even the ER trips and gum in the hair. I am 100% crazy in love with my kids and Dave is such a good dad, I wish you could see him with his sons and daughters. I could not, could not, do this alone. It also feels good to know our family is complete. No more adoption paperwork, no more fees, no more crazy flights, hoop jumping. Team Stirling is done!
I have cut back on my teaching. I used to teach 4 classes a year. This is the first year (since 1999) that I have skipped a semester. It was weird to take a semester off, but I have to be realistic about my capabilities. For the foreseeable future I will just teach two 8-week block classes a year. That is about all I can handle. I love teaching and don’t want to give it up, but I simply do not have enough time in my day to put in mascara. It would be insane to add more to my full plate.
I love you my dearest, oldest friend! Let me know how life is treating you. I would love to hear your musing on your future. It sounds kind exciting.
Forever,Oh Erin!
I loved getting your letter in the mail today. It was like a visit with an old friend. Spencer kept interrupting my reading with question like, “What do snails eat?” and “How do fireflies glow?” So, I snuck off to the porch to continue our conversation :)
It sounds like you have had so many adventures and I hope that they have been good adventures and any darkness has faded. It has been a whirlwind here, let me tell you (and I will.) But first know that you are first best friend always, it has been 35 years and that will never change.
I am so sorry to hear about Mona. I know she was a family member. You brought her with you to my wedding (although I think she stayed at the hotel.) When Milo (Dave’s pug) died about a year after we were married. I was a wreck. I just sobbed and missed that little face. I am sure you miss Mona too. So, I have been thinking about you. I wanted to send a card, but couldn’t find the right one. So, I guess you get a letter instead.
This year has been filled with our own adventures. We got our approval to travel to China to bring home Ella on New Year’s Eve and basically it has been non-stop drama, joy and angst since then.
When Dave and I went to China to meet Ella, we knew immediately after seeing her that she had some severe medical needs. We were told she had epilepsy, but seeing her in person it was clear it some more then that. I immediately thought she had cerebral palsy. She could not balance, she had limited movement with her hands and walked with a very affected gait. She could not dress herself, she could not use the bathroom alone, she could not brush her teeth or her hair. It was quite a shock.
We had Ella with us for the first day and were told if we wanted to change our mind we had 24 hours. Dave and I knew that she was ours and we had no hesitation about completing the adoption and brining her home. We just had a lot of unknowns and were willing to take the leap.
While we were in China, Luke (our 2 year old) ended up in the hospital with breathing problems. Dave went home and I stayed in China for about a week to finish up the paperwork. While Dave was home he was looking for new homes for our family and sending me links.
We had a very frank conversation before he left. Ella had some great difficulty with stairs. Our home was a 2-story with all the bedrooms on the second floor and a place for a playroom in the basement. Without a doubt bringing Ella home meant we needed a new home and a floor plan that was accessible for her.
We had lived in our Herriman home for 8 years. We had great friends and it was a wonderful place. Once Ella came home she fell on or down the stairs 2-3 times a week. It simply would not work. We spent about 4 weeks getting the house in shape; painting, fixing cosmetic problems, replacing a cracked window. . . . Then listed our home for sale in February.
We found a perfect house in March. It was still under construction but had main floor living (4 bedrooms on the main floor and 3 in the basement.) I just fell in love with it. It is about 4100 square feet (our Herriman house was 4200.) The size, location and floor plan were perfect. So we made the leap and bought the house. We moved in in April. We still needed to sell the Herriman house. That was all sorts of stressful. But I was not super crazy about it, I just knew it would work out. Dave and I both fasted and prayed before we made the decision. I felt so much peace and that peace carried me through.
We got an offer on our home the first of June and closed the end of July (with all sorts of crazy drama in-between that I wont trouble you with.) In the end the house sold and it all worked out they way it should. It feels good to be settled into our new home. It is simply perfect for our family, and not just Ella’s mobility needs.
When we got home from China the first thing we did was see medical specialist to see what we were facing. We took her to our pediatric orthopedic surgeon and she has a twisted thigh bone, (AKA: femoral anteversion). It basically impacts the way she walks and contributes to her awkward gait. The good news is that more kids grow out of this by the time they are 10, so we are hopeful time will help this issue.
We also took Ella to a pediatric neurologist that specializes in epilepsy. Ella does not have epilepsy, at all. However the doctor thought she had cerebral palsy (CP). Because of her balance, muscle tone and tremble (in her fingers.) We had an MRI, and it came back perfect. He said he was stumped. Ella has all the symptoms of CP but her brain was “beautiful” and was not causing her issues. It was great to hear that our daughter does not have CP! Then the other thought occurred to me, if not CP, what? It could be more scary then that. At least with CP I knew that to expect. The good thing about CP is that it is not progressive, what you see is basically as “bad” as it gets.
On to another specialist (and did I mention we were selling our home and moving while all this was happening?! And doing the updated paperwork to bring Zoe home?) The next specialist was focused on neuro-muscular disorders in children. She gave me a list of things it could be. . . that was totally jaw dropping. (insert deep sigh here.) Wow, we could be on our way to a permanently disabled -wheelchair bound- child that will not progress cognitively. Dave and I spent a lot of time thinking about what it could all mean.
Last week we got more tests done and thankfully the most extreme scenarios were ruled out. As of right now (and I have to say ‘right now’ because we have been though a list of things that keep changing) It looks like she has dystonia. I had never heard of it before Ella came to us.
Dystonia is often misdiagnosed as CP. They do have the same symptoms, but CP is caused by damage to the brain and dystonia, it seems, is caused by the way neurotransmitters communicate with the muscles. However, CP is not progressing and Dystonia is. But the silver lining is that there is medicine that can treat some of the symptoms, but not the underlining cause. It is same medication that is used with Parkinson's patients.
We are waiting 2-3 weeks for final confirmation from the lab work. It it is indeed dystonia, Ella will start on the medication and we take it from there. Ella is also starting occupational therapy this week which should also help. Although Ella has really progressed since coming home. She can eat by herself, dress herself, use the bathroom and basically do anything a 3 year old should. Her balance has not improved at all, and Luke our 20 pound 2 year old can (and does) push her over with a slight push. Our new home is perfect for her (and all of us.) The stairs have a landing half way down and I am happy to report no injuries since moving in. I think in our old home it was just a matter of time before a bone was broken. . . or worse.
In the midst of all the medical appointments for Ella our boys also gave us a run for our money. Jacob got the official A-OK from the orthopedic surgeon to stop wearing his brace (for his club foot.) Jacob also swallowed a coin that was lodged in his esophagus. That was a one-way trip to the ER at primary children’s hospital to have it dislodged. Spence was sword fighting Jacob and got a cut above his left eye. . . he got 4 stitches for that one. Luke also was at the insta-care at least once a month this winter for breathing treatments (when the Albuterol breathing treatments we did at home weren’t enough.) I was at the doctors at least 3 or 4 times a month between January and July.
As I am writing this it sounds like I am whining. . . I hope you don’t hear that tone in my voice. I love my kids so much and this is just part of the gig right? It just is what it is.
We also welcomed Zoë home in June. She is my joy and my song. I just adore her. She is the best baby by far. She sleeps through the night, she eats well and smiles and coos and is simply perfect. However, she wouldn’t be a true Stirling without some medical need, right? Hee Hee.
Zoë has torticollis and plagiocephaly, basically she has a stiff neck and a flat side of her head. We have been doing physical therapy with her for 6 weeks and both are improving. However there is still a 50/50 chance she will need to wear a helmet to correct the shape of her head. We should be able to tell in the next 4 weeks if that needs to be the next step.
Never a dull moment :)
Wow, I hope I didn’t just bore you talking about my kids the whole time. It’s just that, that is center of my universe. They always have been my focus, but now that there are 5 it seems pretty much mom-time non-stop. I know it will pass by quickly and I waited for so long to have my family. I just want to enjoy it all, even the ER trips and gum in the hair. I am 100% crazy in love with my kids and Dave is such a good dad, I wish you could see him with his sons and daughters. I could not, could not, do this alone. It also feels good to know our family is complete. No more adoption paperwork, no more fees, no more crazy flights, hoop jumping. Team Stirling is done!
I have cut back on my teaching. I used to teach 4 classes a year. This is the first year (since 1999) that I have skipped a semester. It was weird to take a semester off, but I have to be realistic about my capabilities. For the foreseeable future I will just teach two 8-week block classes a year. That is about all I can handle. I love teaching and don’t want to give it up, but I simply do not have enough time in my day to put in mascara. It would be insane to add more to my full plate.
I love you my dearest, oldest friend! Let me know how life is treating you. I would love to hear your musing on your future. It sounds kind exciting.
Friday, August 15, 2014
Ninja turtle in the house
Halloween costumes have been found. Repeat, Halloween costumes have been found.
Wednesday, August 13, 2014
So annoyed
Just made 3 dozen rolls. I cooked them all at the same time. As you can see my dark pans cooked faster :(
Tuesday, August 12, 2014
Sunday, August 10, 2014
Zoë Hina Stirling : Blessed
Yesterday was a perfect day. Zoe was given a name and a blessing. It was so special.
During the blessing Zoe was told that she would learn from the best books, be excited about learning from experience, and that she would take what she learned to serve others. It also said the love of Heavenly Father would radiate from her to others. She was also blessed with the desire to marry and have a family. It was just a special and sweet time for our family.
As an added bonus, Dave and I spoke in sacrament meeting too. That was kind of fun to have our family all there as we spoke. But honestly the best part was that every child had a lap to sit on during the meeting. Both sets of grandparents were there as well as Uncle Tony + family and Aunt Janelle + Uncle Chris. It was so great to share our special joy with everyone.
Our talks were about the sacrament. I introduced our family then then talked about the three Rs: Relationship, Reverence & Renewal. I spoke for 15 minutes, but I was only asked to speak for 10. So, Dave was so amazing, he condensed his 10 min. talk into 5 min. of shear awesomeness. That is real love my friends. He just smoothly got up and gave a perfectly structured and well prepared talk that only contained half his content. Wow. I was super impressed. I guess all that time on the high council speaking circuit trained him well.
After sacrament we came home and every one stayed for lunch. We had a nacho bar with all the fixin's. It was good to gab and and chat. And now that Janelle has been sustained I think I can spill my sister's beans. She had been called to be Young Women's President in her ward! Yow-Za! What a busy calling. . . all I can do is snicker a little and think. . . "I'm so glad I'm not you." But, she will do an amazing job. She already has some fun ideas and I think those girls are lucky to have her.
Also, yesterday my sister Sandy gave a talk in church. She sent me a copy of her talk and it was pretty spectacular. I was kind of wishing she could write my talk too. I got to talk to her yesterday and she said it went really well. I had little doubt. She is an excellent teacher/speaker.
So, our weekend was pretty perfect.
Thursday, August 7, 2014
More testing for Ella
Karla and Ella are home. The lumbar puncture and EMG went very well and they finished sooner than anticipated.
Some preliminary test results are in. Ella does *not* have myotonic dystrophy, or any other form of muscular dystrophy for that matter. Her muscle strength is fine. She also does not have neuropathy.
So where does that leave us? The most likely diagnosis is a condition called general dystonia. This is where the muscles contract involuntarily, causing uncontrollable repetitive or twisting movements of the affected body part(s). The disease is treatable using some of the same medications and techniques as those used for Parkinson's disease, though it is a separate condition. There is no cognitive disability related to dystonia. The disease progresses as patients age but there is a wide potential spectrum of how severe the symptoms are and how long it takes them to progress.
The final diagnosis of dystonia is pending the lab tests which will take 2-3 weeks to run their course. Our neurologist thinks it's the most likely condition and she is preparing to start Ella on oral medications when the results are confirmed. The meds can help with the symptoms but do not treat the underlying condition. There are good affordable generics out there and serious side effects are rare.
Overall we are very relieved and grateful that signs are pointing to dystonia rather than the other conditions. Myotonic dystrophy in particular would have been an extremely challenging diagnosis in terms of its implications for Ella's future, so we are grateful that preliminarily, at least, we're looking at a more manageable condition.
Thank you all for your fasting and prayers on Ella's behalf!
Dave
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