"We are going to focus on LIFE for Katya. I believe, one day, she will amaze the world."

Dr. Ben Carson on Katya Dueck

Wednesday, June 24, 2015

Begone, Tonsils!

Up until the last two winters, Chad was my healthiest kiddo. He rarely ever had even a cold. Then a series of infections felled him, and he developed not only asthma, but enlarged and "boggy" tonsils. When he would recover from one illness, the tonsils would not really recover before he would get sick again. By this past winter, the tonsils were so large and painful all the time that we accepted our PCP's offer of a referral to a pediatric ENT and set up an appointment.

At the appointment, the ENT decided to order a Sleep Study before he would agree to surgery. So we had to wait to get that done, then wait for it to be interpreted, then wait some more until Chad's approval for surgery moved through the system and we were called for a surgery date. Meanwhile, Chad struggled to get even food down many days due to how swollen his tonsils were. I was worried too--as bad as they looked some days, I couldn't imagine what would happen if he would have even a mild reaction to something and have some slight throat swelling!

Meanwhile, Chad's desire to get those pesky, miserable things gone grew stronger and stronger. Like he told me so maturely one day, "If I don't get these out, I have no end in sight to my misery. When I have surgery, I'll be miserable for awhile but there is an end to it!"

So Monday he was right ready to get up at 4:30 AM and head to the hospital! He was a champ through the whole entire process, including a one night stay there.

Chad Waiting in the Pre-Op Area

The surgeon told us post op that fully 60% of his airway had been compromised by the super enlarged tonsils and adenoids. Given that he was in **much** better shape Monday in terms of swelling when he went into surgery, than he had often been this winter, I shudder to think how compromised Chad's airway was during those times!

The surgeon expressed hopes that Chad will have an increase in his energy and health now that those nasty bits are gone from his body. Yes, we are well aware that the tonsils and adenoids are important and intended to be a part of the body's immune system, and all the rest of us have ours and hope to hang on to them permanently, but for whatever reason, Chad's broke down and were no longer helping his life. Rather, they were hindering it, as our PCP explained that when they continue to stay enlarged and full of pitting, they actually harbor bacteria that can easily overwhelm his immune system at any time. Also, they were impacting his ability to breath well while sleeping, creating sleep apnea which further harmed his body and health. So it was time to evict them and hope for a better future!

Chad, post-op.

Chad's surgeon wanted him to spend one night in the hospital to be monitored. Chad was a champ about starting to take ice chips as soon as he was awake and then moving on to a popsicle and then dairy-free sorbet and so by supper time he was allowed to eat some soft foods and progressed to being able to get up and go do a craft because he was doing so well! Everyone was very proud of him!
By the next morning, Chad was doing so well he was discharged and allowed to go home so we got home soon after noon.
Discharged and Ready to Go Home
Now Chad is recovering at home. He says today he does not feel as well as he did in the hospital but we were warned that was to be expected, so we are just keeping up with fluids and pain meds and hopefully in a few days he will feel a lot better. Meanwhile, Kristina is reading books to him and whoever can snuggles and watches movies with him, or we find other things to try to distract and entertain him. We'll get him through this, and hopefully be on the path to a healthier and better fall and winter this year!!

Monday, June 8, 2015

A Serious Prayer Request

Last week we found ourselves climbing over the mountains and heading towards Baltimore yet again.

It was time for Katya to have a CT scan and to see  a handful of her Doctors.

I have processed our appointment last week for Katya at JHH enough that I'm ready to share a prayer request.

We need specific prayers for bone growth for her. In spite of all the many things we have done to try to get her bones to grow thicker again, they have not. Her skull is still half as thick as the average person's skull. This is risky for her and just not a good thing.

It was frankly disheartening to have tried so hard the last year plus to encourage bone growth through diet and Doctor suggested supplements only to be told it had not changed appreciably since her last CT scan. UGH.

Her Doctors were not happy. We were not happy.

Please pray for bone growth as well as protection in the meantime for Katya's brain and for no injuries to her head! Also pray for bone growth in general for her. The Doctor's said her overall bone structure is very petite (no surprise, we knew that). She needs her bones to grow thicker so it's easier and safer to patch the empty areas of her skull. (Yes, we have gotten a second opinion about this, and yes, it is strongly recommended that we get it done due to how large the holes in her skull are, leaving her brain at risk in those areas.)

In better news, the Doctor's were impressed with how much progress Katya had made since her last visit in early December, and were happy for so many good reports from school. Her plastic surgeon enjoyed seeing the video of her participating in her school program--I wish I could share it here but since it has other kids from her school in it, I won't be sharing it publicly.

Thank you for praying for Katya. We really appreciate it.

Wednesday, May 6, 2015

How To Stay Happy While Focusing on Coupons

Our local library has long had a community service that our family loves--they have a table with a coupon basket so that members of the community can bring coupons they do not need, and take some if there are coupons they need.

I'm a pretty regular person at the coupon box--we try hard to hit it at least once a week. Feeding our family is an expensive proposition no matter how hard we try to keep the cost down since we have multiple members with dairy allergies, and people who need to eat gluten free. We also seem to need plenty of protein (that pesky hypoglycemia!) and of course, that adds to the cost too! So while I often can't find that many food coupons that would be helpful, sometimes I do.  I also depend on coupons for razors and other house hold items that helps stretch our budget.

Well, as you can imagine, sometimes when we go to search for coupons our family can use, the pickings are slim at times. I used to start to feel stressed and unhappy as I would paw through the stack. After all, how were we going to make the limited funds stretch that week without coupons?!

One day it occurred to me that it would do me a lot more good to simply choose to believe that God knows about my needs and to accept any coupons I find as a "bonus" of sorts. That helps me to stay happy while sorting through coupons, whether or not I find any or many. Coupons are something I am thankful for when they are provided for me. But whether there are coupons or not coupons, I am trying to choose to trust. That has taken the stress out of couponing for me and turned it into a mainly enjoyable activity.

If Charity or Kristina can help me look through the coupons, it definitely is an even more fun time! Sometimes one or the other of them helps me clip and sort the coupons at a later time and get them organized into my coupon binder. My favorite way to handle that chore is to grab a cup of unsweetened tea at a quiet Subway in our area and get to work while Katya is at her music lesson with her respite provider. When I keep thinking I will "be good" and get it done when I am at home, it often just does not happen. Then coupons expire or get lost because they are not properly stored. That has happened to me often enough that I have come to realize that I really save money in the long run by grabbing the tea, plunking my binder on the table and getting to work! I carry scissors fastened to my binder, and an envelope to put coupons into that I may not want to go back to the library,  so everything I need is handy for a quick couponing session.

Today I saved $25.00 on a shopping trip to Wal-mart because of coupons. While I often do not do that well, I'm happy that I could this time. Successes like this make me happy to keep on couponing.

What tips and tricks do you find helpful if you are couponing? Do you like to coupon and find it fulfilling, or is it only a necessity that you engage in out of need? Leave a comment or link to a blog post of yours that is about how you coupon!

Sunday, April 26, 2015

A Traveling We Go

Well--we are not currently traveling anymore, but we DID last week! Paul, Chad and I went to parts West to see many relatives, especially my Dear Grandma who I had not seen for around 5 years! High time definitely to see her again!

Thankfully, accumulated points allowed us to obtain 3 inexpensive airline tickets completely for free. Have tickets, will travel! My Aunt loaned us the use of her car as she was going to be out of the country most of the time we were there, so we happily used that. And all but one night (which we used points to get a free hotel room) we were able to bunk with kind relatives. We packed a LOT of friends and family into one week. It was great even though we needed to come home to catch up on our sleep! HA!

Chad was a trooper, but he finally told us he was home sick and needed to go back and see his siblings! Seeing as that was the last day we were traveling, the timing worked out OK--we boarded a plane the next day to fly home!

Charity held down the fort with Kristina's help and made sure Katya got on and off the van for school safely each day. Katya had a tough time with us gone "so long" but she survived it and was over-joyed when it finally sunk into her that we were really home! Charity made a paper chain for her that she used to help mark the time gone, and if I understand right, the school helped too with a calendar for Katya to keep track of when we would arrive back home.

After we got home, Katya jumped and jumped so long and hard for joy that the school sent a note home the next day that it seemed as if her leg was hurting! I imagine it was a bit sore for a day or so after all the joy-jumping!

It was so good to get to see family again that I don't often get to see, as well as the change in landscape. I love the mountains and prairies and it was refreshing to see them again. It feels great to be back home with all my kiddos even though I enjoyed our little trip.

Friday, April 10, 2015

So Exciting!

Wow! As if last week's great news about Katya's musical progress was not exciting enough, we got another wonderful report after her lesson yesterday! I figured she had done really well because she came home so absolutely thrilled afterwards. Just look at what her teacher reported!

HI Hope Anne, Had a wonderful lesson with Katya today. She is so sweet, was very pleasant and settled, and of course, so HAPPY to be doing music. She had a smile on her face most of the entire time : )

I gave her a new song: This Old Man. The thing I noticed today was the grasping of sequencing. Instead of concentrating on one note at a time ( and she does so, beautifully, being carefully accurate) she could see a full pattern of notes - a five tone scale and play them more as a group. I will begin teaching her more with this technique as her base of note recognition increases. She will begin learning songs quicker. 

We also worked on note values for the first time and she loved this. I think it is because she is realizing that she is really learning music and not just playing at little exercises. We did: quarter note, half note and whole note and she seemed to understand the concept. [Yes--she just learned about fractions in school a few weeks ago, so I'm sure it all clicked with her! --HAD] I held her finger down on the note, to demonstrate and then she was able to do it herself. She has a new Write and Listen book [Book 2] as well and we began that. 

Also, I wanted to tell you she enjoys "paying" for the lesson, bringing the $$ to me herself.

That's it for now. Blessings, A.

Tuesday, April 7, 2015

A Music Lesson Report

This was the super exciting music lesson report we received from Katya's teacher after her lesson last week.

Hi Hope Anne,  Really enjoyed having A. [someone who is working on writing a book about our family's journey to Katya and her life with us] come for Katya's lesson.  Katya must have sensed she was there for her, as her performance was heightened and she did especially well.
Usually on the note songs I point to each note and Katya carefully follows each one playing the correct key on the piano.  She loves this systematic learning and enjoys the song she is hearing herself play.  This time, without any suggestion from me, she jumped right in and pointed to the notes herself (with her left hand ) carefully and correctly playing each key (with her right hand).

 She did this for the first two lines and then played the last two lines just looking and playing from the age (with no pointer hand!!) That has never happened.  She can now read music ( at least the big note kind with the letter names on them.)  I will keep feeding her new songs of these that she can do at the lesson and at home.  From there we will transfer to learning and reading notes without names on them.
The other fun thing was that when we played, "He's Got the Whole World," she automatically added her left hand, playing the chords exactly right.  We haven't done much with the left hand at all and this was exciting to see.  

She has such a love of music and a sensitivity to it - she joins and mimics me both in accuracy, tempo and feeling, to where she plays very musically as well.  This was so precious and evident as she enthusiastically jumped in to play guitar playing loud, excited strums and then quieted  down on her own to match how I was singing.

The other fun thing was when I asked if she wanted to play the harp or the guitar, she got her "talking board" (?) [Katya's IPad with the LAMP Words for Life app]  and pressed a button showing "Guitar". 

Beyond that we sang and did hand motions to " You Shall Love the Lord Your God" which she enjoys so much.   If you could help reinforce this at home that would be great.  Perhaps Alyssa could teach Charity or Kristina.  

That's all for now.  Looking forward to next week :  )
--Katya's music teacher
Needless to say, this report got a lot of people in Katya's life pretty happy! ;-)

Sunday, April 5, 2015

The Body Knows

The last few days have been "off" for me. I have felt cranky, crabby and emotional. My ability to cope with much of anything has been low. Yesterday when I was particularly challenged, one of my kids asked what was wrong. "I don't know," was my response. "I just don't feel well emotionally or physically." It was nothing I could really put my finger on--just a yucky, nasty "off" feeling both physically and emotionally.

I got up this morning feeling what might be commonly called, 'blue' and drug myself out the door to church almost in tears. I was feeling so bad that I actually pulled some "Peace and Calming" essential oil out on the way there and applied it. That helped a good bit but still did not fix whatever was ailing me, and I walked into church and sat down wondering what was wrong that I felt so awful. And why couldn't I feel happy?!

Yes, we have a lot on us, and I'm dealing with a lot of stress from multiple directions, but everyone was reasonably healthy, we had SUN shinning (normally a great thing for me) and life was supposed to be full of joy today of all days! So where was *my* joy?!

Soon after the service started, we swung into "Because He Lives". And in an instant, I was transported back to Easter Sunday 2003 when I sat weeping during the church service, having just come through an emergency D and C  two days before. I was physically wiped out, and emotionally depleted, and in deep mourning for the loss of a baby we had much longed for. That song was sung during that service in 2003. Suddenly I was flooded with clarity.

My body KNEW what anniversary it was, even though my brain did not consciously until the song at church made every thing become clear. As soon as every thing clicked, my emotions were actually able to calm down and even out. There was no reason for me to question myself and/or beat myself up mentally for what I was feeling! There were REASONS--valid reasons--for my body and mind to be in mourning.

By the time the service ended, I walked out feeling much improved both in body and mind. I simply needed to give myself the chance to be gentle and kind to myself on my journey through another anniversary. In order to give myself grace, I needed to consciously aware what was triggering my body and emotions.

Some of the trainings we have attended on parenting children from hard places have covered this topic. I always believed it--and in fact--we have seen it happen with our children--they don't have to be consciously aware of hard anniversaries in order for it to impact them! But this experience has hopefully made me a more understanding Mom the next time one of my kiddos goes through this. As upsetting and stressful as it was for me to experience and try to process until I figured it out, I can only imagine how much more upsetting and stressful it could be for a child.

These days, most of the time I feel much comfort due to the precious blessings God sent into our life after that miscarriage (and others). All three of our youngest,  Chad, Kristina and Katya have given me much joy and laughter and helped ease the ache of the loss of other babies before them. I'm very thankful for my youngers (plus my two adult kiddos, of course!)! But clearly, my body has not forgotten the baby I loved and carried, even when the busy days crowded it temporarily out of my brain. I'm actually glad about that, now that I figured it out.

After I took a nap, I walked out into the lovely spring sun and fresh air today and went to Jessie Jo's angel. I looked at the crocuses that are finishing up, and the daffodil buds that are poking out and soon ready to bloom. And I thought about that Easter Sunday when we celebrated my baby's brief life 12 years ago this month. My heart feels much more OK tonight. So does my body.

And best of all, as I was getting Katya's meds for bedtime ready, she walked up to me, with absolutely NO prompting, no asking--and HUGGED ME. A long, expressive hug with her face full of love and joy as she looked up at me. This is a huge first, and a much treasured moment! May there be many more to come.