In the entire time of my blogging career, this has been the longest absence of posting. I have missed it, but I also have been in a new place that left so little time for the computer. A big part of the problem is I no longer has a laptop, it died, may it rest in peace. We do have another laptop but it just doesn't feel like mine, and I like my new life without a laptop between me and my family. I do have a little 7 inch tablet that can help me check emails, stay in touch through Facebook and do some business stuff including banking, and for now this seems to be a good place. But I do miss blogging.
Why do I miss blogging? I miss it because it is a way for me to review my life that is passing by so quickly that before I know it, 6 months has flown by! And so many seemingly unimportant things may go by without notice. I also love to blog because then I can share things with my family someday, and I like to go through my blog to remember when things happens and maybe to help me remember details that I have forgotten!
So, here I am, going to try to do a fly over of the last 6 months, and it's going to kill me be brief. I so wanted to devote an entire blog post to Jessica's wedding, but it just isn't a reality for me right now.
For my readers who like the sweetened condensed version, here's my outline of the first 6 months of 2015:
January - Jessica and Jon's wedding, Christy's sedated MRI/dental work, Seahawks Mania!
February - Crutches, more Seahawks mania, finding a new normal (not very successfully), Jessica's Pregnant!
March - Both girls hospitalized, everyone sick in one way or another, results of the MRI (she has had a stroke, probably around the time of her heart surgery at 18 months), 30th wedding anniversary
April - I have no idea...other than I was so sick I was basically bedridden for 3 weeks and implementing new protocols for reducing Christy's risk of another stroke and Christy's sleep study and hip exrays, Reuben starts a part time job. Rachel and Reuben go to Pennsylvania for National Bible Competition.
May - Sick again, but not as long, Rebekah get's her driver's licence, Christy get's a crawler, and a stander is ordered.
June - Jessica's 20 week ultrasound (baby has problems), Reuben gets a second part time job and starts driver's ed, Christy's cardiology and audiology reports, as well as a consult with an orthopedic doctor about her hip exrays, plus the sleep study results, Christy starting on oxygen at night.
So, here's some more detail about each month, but I'll still try to keep it to a minimum:
January
Jessica and Jon had their rehearsal and dinner on January 2nd, the night before their wedding. We had spent a couple of days previously decorating the church sanctuary, gym and foyer. It turned out beautifully! It was so much work, but it was worth it.
The rehearsal went well, and we had a nice dinner, and then the children and I sang a song for Jessica. I had written words to the music for "Broken Hallelujah" that talked about her life, and these new changes with her getting married. She cried and everyone enjoyed it. I was surprised, I thought it was more funny that poignant, but I'm so glad I was able to do it even though we had only practiced a few times!
Jessica's wedding day started off ahead of schedule. We were ready to leave before it was time to read, so we sat down and played a few rounds of our favorite card game, Nerts (it's like speed+solitare). Then it was off to the church and the mad dash of getting everyone and everything ready.
Jessica made the most beautiful bride - she looked like a princess! The bridesmaid dresses that Jessica had made for everyone turned out amazing, as did the flower girl dresses. I did the hand sewing for the dresses and made all the flower arrangements (with some help here and there).
When it was time for her to come down the isle, her wonderful husband to be was overcome with emotion, as were most of us! They had worked so hard to have a courtship that honored God, and an engagement that drew them closer together yet saved even their first kiss for this special day.
The ceremony was beautiful, and the music was amazing. The pianist was my dear friend, Ilsa, who also taught me to do the flower work! She also made all the bouquets, even Jessica's, which was a work of art!
After the ceremony there was photographs, and a video of photographs of them growing up and their courtship and engagement. They had their first dance, and we played some games, and then before we knew it, it was time to them to ride off into the sunset! No regrets, a most beautiful day indeed.
And the best part for them - a honeymoon spending 10 days in Hawaii! Oh my it was hard not to be jealous since I've never been there!
And then we were back home, without Jessica, trying to find a new normal. I really have no idea what went on much back then, only that the girls had their therapy, Rebekah was still working on learning to drive and we were working to find a new way to function without the push of a wedding to put on.
Christy had an overnight stay at Children's to have sedated dental work and a sedated MRI. We got a call very quickly after the MRI as the result they said were very interesting and that they indicated that she had suffered a stroke sometime around when she had her open heart surgery. They referred us to the neurology clinic, and set up appointments with a specialist there who works with children who have her type of stroke (vascular anomalies). More on that later!
One thing that we did a lot of was going to the big boy's apartment to watch the Seahawks game - and they were playing so well in the playoffs! I even had my nails done special as the Superbowl approached!
Here's a highlights video of Jon and Jessica's wedding - hope you can take the time to watch it!
Jon and Jessica Wedding Film @ Spring Creek Bible Church from
Greg Thames on
Vimeo.
February
Things began to fall into a routine, except that my old knee injury started to flare up. When bringing Christy from her hospital room to the car after her overnight stay, I had pushed her heavily ladened strolled while carrying my luggage. The extra weight aggravated my knee and I ended up on crutches again for 3 weeks. YUCK! Thankfully, with lots of icing, rest, elevation and patience, it settled down and I was able to get off the crutches...next time, as the doctor said, I might end up needing surgery.
Jon and Jessica were back home and she was coming out to the house to work once or twice a week. We planned the best Superbowl party ever, at least for our family...oh yeah, it was the first time we had actually planned a Superbowl party!
It wasn't long before we found out that Jon and Jessica were expecting a honeymoon baby! They were overjoyed as they were hoping to get pregnant right away! What a blessing! But the tiredness set in quickly, and she began to cut down on how often she was coming out to work, so Rebekah, Rachel and I were working together to make up for some of her lack of working by doing some of the shipping.
We also took Christy down to Seattle to meet with the neurologist, Dr La-Fond. She was amazing. She took a long time explaining to us what they saw in the MRI, and showed us the images. We were shocked at the extent of damage - about 1/2 of her brain on the right side is just gone - nothing there. She said that the type of stroke that Christy suffered was from a clot forming in the heart and going to the brain, causing a blockage and lack of oxygen. She also explained that when the brain is damaged and the tissues are dead, your white blood cells come in and clean house - leaving nothing behind. A vacancy. This vacancy allowed her ventricals to dilate into the open space, but this was not concerning to her. What does concern her is that the vessels going to the right brain are smaller than those going to her left. This could be just the way it is, or it could be a degenerating situation. Christy will be having another MRI in October to see if there are any changes.
 |
The darker grey on the right side is where the
brain is gone. The black part is the ventricals
that hold the cerebral fluid |
But what did this mean for Christy? It means that we now need to work to reduce her risks of having future strokes, as she is at a higher risk since she has had a stroke. Her heart repair also puts her at higher risk. So the things we work to avoid are dehydration, illnesses (especially chicken pox, which we have had her vaccinated for now) fevers, and low oxygen levels. She also gets 1/2 a child's aspirin once a day to reduce her likelihood of forming a clot, as due to a heart defect/repair, the abnormal blood flow can lead to clot formation in her heart.
So we had to get serious about her getting her fluids. This meant we really needed to go to night time feeds. So we got a wedge, and I created a "sling" that holds her in the general position of staying on the wedge and we starting giving her 2 cans of formula at night. We tried to give her the additional 400 mls of water, 1/3 after each meal, but it just was a hassle, so now we give that to her during her naps. This has worked very well and has been the best solution for her getting her fluids consistently.
Oh - and that G-Tube? It was going great, until I nearly pulled it out the night before Jessica's wedding, but it pulled hard enough to cause bleeding, and that later developed an infection. But a round of antibiotics (oral and topical) did the trick. The infection tried to come back, but I caught it quickly and it only required topical antibiotics the second time. Then I heard that organic bamboo velour can be a life saver with G-Tubes and reducing the incidence of the development of granular tissue, so I made a bunch of G-Tube pads using that and we have had no problem since! Much better to prevent the granular tissue than to have to deal with getting rid of it. Although we did have great success at using Granulotion to get rid of granular tissue when we needed to.
March
Things seemed to be going along nicely and them WHAM! Sickess hit. And this was a bad one. For the older members of the family it was a really bad cold with a cough and freaked me out. I heard Daniel in the bathroom coughing and coughing and coughing and not able to clear his airway and I thought, "This could kill the girls!" Elizabeth got it and she had that terrible, difficult to clear the airway mucous too! And then Christy got it...and then Carese, and then Esther.
Christy ended up in the hospital, starting Saturday night, after about 4 days, with a double ear infection and pneumonia. She tested positive for RSV. I stayed with her the first full day, but during that night I became violently ill with an intestinal illness and had to go home. Daryl and I passed in the night on the freeway as he took up the hospital vigil while I went home. The next day I could barely walk to the bathroom I was so weak. Tuesday was only slightly better, and then I became aware of how sick Carese and Esther were. Wednesday Esther took a turn for the worst and by evening I took her in. They admitted her and she got to share a room with Christy. Esther, however, was not as sick as we thought, and after a night of oxygen, she was fine all day without it.
Christy was finally doing great, but still needed oxygen whenever she slept. Thursday night was no difference for either girls. Friday both were ready to go home, but Christy still needed oxygen, so they sent us home and had Norco bring out supplies for giving Christy oxygen at night (a first for our family). It went well, and after a few nights she no longer needed it. And that pretty much brought us to the end of March before we were all done with breathing treatments and antibiotics for the girls.
We were all just recovered enough for Daryl and I to get away for three days/two nights to Victoria B.C. to celebrate our 30th wedding anniversary! I was such a sweet time of site seeing, movie going and even a little walking/hiking! We had a great time and it was such a blessing to have that time together with me healthy, if even just for those few days!
April
April is pretty much loss for me. I was down with a sinus infection that caused profound dizziness and incredible headaches. After suffering for 10 days, I went to the doctor and got on antibiotics. While they helped remarkably after about 3 days, as in my massive headaches were gone, I dealt with debilitating fatigue and dizziness so I was pretty much useless and spent most of my time in bed for the next 8 days or so. So April was pretty much a write off for me.
I was healthy enough (barely) to bring Christy to Seattle for a slew of clinic appointments and a sleep study. It all went well, and this time we did not get a call right away about her sleep study, so that was good news too. We would have to wait until June to get the results...that is a very long wait! While there we met with a rehabilitation therapist. She went over Christy's history and evaluated her needs. She gave me some great resources and ideas and also had us get her hips exrayed. These exrays revealed that her hips are not properly developed and she is at a risk for dislocation. This condition is very common in people who have Down Syndrome, so it wasn't a huge surprise.
The last week on April, Reuben and Rachel flew to Pennsylvania with their respective teams to participate in the Nations Bible Quizzing Competition. They had a great time and both did very well. Reuben was awarded top quizzer and top memorizer for our counties teams, and Rachel was in the top 15 quizzers too! Rachel memorized 211 verses and Reuben memorized over 400 verses. It's a great way to get kids to hide God's word in their heart. I've had at least once child doing Bible Quizzing (sponsored by Teens For Christ) for over 15 years now!
May
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| May 7, 2014 |
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| May 7, 2015 |
May 7 we celebrated Christy's "gotch day". That was the day we brought her out of the group home. March 17 marked one year since she came into our home. She has grown so much and learned so many new things in the last year, it is truly amazing. She is amazing!
Another huge milestone in the month of May was that Rebekah got her driver's license! She had elected to wait to get her permit until after she turned 18. She has had her permit for about 18 months, but due to logistics it took her a long time to get enought practice in, what with the adoption, hospitalizations, holidays and the wedding! We are all happy to have another driver in the house again! It is so helpful!!!!
Also, Reuben started working part time at Perry Pallets, where our son Jonathan drives as a commercial truck driver!
Just a little ways into May and suddenly all the symptoms of the sinus infection were back, but this time I only waited 2 days to go in. After taking the stronger anti-biotics for 48 hours I was noticably better, and was back to nearly normal within the week. The stronger antibiotics were hard on me though, and it took a few weeks of probiotics and antifungal stuff to get me recovered. By the end of May I was no longer believing that I would never have energy again, and had moments of feeling healthy! There was hope! I realized that our intensely crazy, stressful blessed year had taken it's toll on my health and I needed to work to regain my immunity and health! So that's what I have done!
During May Christy had gotten new, better let bracing and had been doing some standing and some practice walking with lots of support. Her physical therapist was able to loan us a "crawler" and Christy is beginning to figure it out. It would help if I could get her in it more regularly....This therapist also has been working to get a special stand-to-sit type of stander for Christy so she can spend more time each day bearing weight so she can get stronger leg bones and build her leg and core strength to further prepare her for walking! We are still waiting for this, but it should be arriving soon!
June
On June 4, Jessica and Jon went in for their 20 week ultrasound. They had been planning a home birth, but had opted for an ultrasound to make sure that a home birth would be OK for their baby. The ultrasound revealed several problems for their baby. She called in tears. So hard! They said that they say cysts on the babies brain, a possible club foot and what they did see of the heart was not normal. They said they suspected Trisomy 18. She blogged about this day on her new blog,
Matthew's Life
We all cried and cried as we tried to wrap our brains around this. That first weekend was so difficult. Saturday night after going to bed, I cried and cried - seemed like I would never stop. That was my low point. I continued to have times when I was weepy, but they came less and less.
They were referred to a specialist the following Tuesday. I was able to go with them and see the ultrasound. They confirmed what the first ultrasound showed, and saw a better image of the heart. Their baby had a
VSD, an ASD and an AV Canal defect. Even though they tried, they were unable to determine if the baby was a boy or a girl. They decided to get a blood test to detect fetal DNA, but the test takes a week to get results. This test would also tell them the sex of the baby. Jon and Jessica now wanted to know so they could name their baby and begin to bond better, and to cherish this baby each day that they could. You can read her writing about this day on
Matthew's Life too.
Life at home during this time continued to be busy, and we began our summer break from school (not that we had been doing school regularly, but I finally decided to stop beating myself up about our lack of schooling for a few months, next year will be better, right???) Rebekah and Rachel had planted a garden and it was coming along nicely. Reuben is now working 2 days a week learning construction as well as three days a week at Perry Pallets. He also started Driver's Ed on June 16, so he is either working or sleeping these days it seems!
The day after Jessica's appointment with the specialist, Daryl and I took Christy and Esther to Children's. They both had hearing tests, and Christy had a cardiology appointment and a consultation with an orthopedic doctor to discuss her hips. They both had overall good hearing tests, but there was some concern about Christy's right ear, so they are going to repeat some of the tests when she is sedated for her next MRI in October. The audiologists recommended that Esther gets more speech therapy to enable her to communicate better. Her signing is really growing, but her verbal speech has not improved much until just recently. She can now say nearly all the letters of the alphabet when she's watching the Signing Time alphabet video!
Christy's Echocardiogram was much clearer this time compared to last year's. It revealed that she has an unrepaired ASD (they repaired one) and that her AV Canal repaired valves are leaking a bit. This doesn't mean she needs surgery, but in light of her sleep study (she is doing better, but not good) she is now getting oxygen at night. She will have another echo during her sedation in October to see if some of the blood flow problems were related to her stressing about having the echo done. But fo now, neither of the girls have any planned trips to Children's...yay!
On Wednesday Jessica and Jon got the results of the blood test (it's call a free cell test, or a Panorama test), and it showed that they are having a little boy and that he doess test positive for Trisomy 18. While the test in and of itself is not conclusive, when compared with the ultrasound findings, it's a definitive diagnosis. I'm sure Jessica will be blogging about this anyday now!
Also on Wednesday I was able to finally get the results of Christy's sleep study way back in April. While her numbers have improved, she still has mild obstructive sleep apnea. This combined with the new Echo information means that it would be best for her heart and lungs if she would get supplimental oxygen while she sleeps. She reached as low as 84% oxygen saturation during the sleep study. So this is now our new normal. So far, she doesn't like it, and it takes longer for her to fall asleep and I need to check her after she falls asleep to make sure the nasal canula is in the right place, but I'm sure she will eventually get used to it...untill then, please forgive me if I fall asleep while talking, writing, or anything really!
Last week Daryl's spring project finally got use! He has been working to build the ultimate swing set. We got the tubing at a garage sale last summer, and after lots of planning and welding and lots of heavy lifting, it made it into the yard and we got some chain and go the swings in place. We do plan to get proper attachments at the top and plan to have some swivels for using a proper tire swing and hammocks and other therapy type swings in the future! Also last week Reuben started Driver's Ed!!!
On Father's Day we had Christy dedicated at church. It was amazing. Our pastor's prayer was such a blessing, and he shared a little of Christy's life and how God had worked in amazing ways to bring her our of Bulgaria and into our home. Such a sweet Father's day!
On Monday, I went with Jon and Jessica to Seattle for their appointment with the OB at the University of Washington Fetal Maternal clinic to discuss the results of the blood test. They had lots of questions and the doctor carefull answered every question. She was gentle and compassionate and we all felt like she was a great person to work with. They also met with a genetic councelor who did an amazing job of explaining trisomies in general, and I even learned a few things! The best part of the day though, was that we got to eat lunch with the Merry Family. We had connected through a mutual friend and a Facebook group. They have a little girl who is 9 months old and has full Trisomy 18. We even got to hold her! Todd and Molly are fellow believers, homeschoolers and they ministered to us all and answered so many questions from the perspective of having lived through the process of carrying a child with such a dire prognosis. Todd and Molly even prayed with us, and what a blessing that was! You can read about their journey with Vivien on their blog,
Merry Musings
WOW! No wonder I feel like I've been in a whirlwind for months now...The last 6 months have probably been the most intense, most stressful months in my life to date. And that is saying a lot! And it doesn't seem to be letting up much in the near future.
There is still an entire week left in June, but this blog post is so overdue, that I am not going to hold it up over formalities! Who knows, maybe I'll even blog again before the end of the month to fill in the things I forgot about today!
Let me end on this note. Please pray for Jessica and Jon and our families as we walk this difficult road of planning for the possibility that their precious little Matthew will spend very little time in their arms, while hoping for a better outcome. Pray that we will all experience God's grace and compassion like never before. I've been through a lot with my children, even a 20 week pregnancy loss, but what they face seems from this view to be even harder. But our God is a big God, and this is not a Chance occurance, a random fluke, this isn't what LIFE has thrown our way. This came to us filtered through the loving hand of our Heavenly Father, and He does all things well. This is for our good and His Glory. Jon and Jessica are praying that through Matthew's life, not matter how short or how long, will bring glory to God.
I can not say this loud enough, long enough, or often enough....
Every Child is a Blessing, no matter their abilities, no matter the length of their days, no matter their appearance.
Every Child is a Blessing.
We only fail to see that they are a blessing when we no longer see them as an eternal being created by the Hand of God Almighty.
If we see them as a burden, then they will seem to be a burden.
If we look through the Father's eyes, and into eternity, then we will see the beauty in every child and the blessing that they truly are.
