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February 20 My Update...Hello there. As usual it's been awhile since our last update but that's good for us.
As I write this, Kallen and I are currently dealing with plugged noses, sore throats and upset tummies. Ugh, those wintery bugs are a pain and we are much looking forward to SPRING! Kallen is a lil trooper though. He had a cold in December which raised our anxiety a little bit and ultimately he needed antibiotics. We're watching this cold and hopeful that it won't turn into a secondary infection.
Our BIGGEST, BESTEST news for this update is that Kallen is WALKING! Halleluiah! PRAISE GOD! We are thrilled for him to be experiencing his new found mobility! Such a blessing! I can't even describe to you how joyous it feels to watch Kallen walk to the front of our church for 'Children's Message' by himself. He is expressing a bit of independence too that we are learning to cope with! Along with walking comes gating! The stairs at the top and bottom have gates as do the bathrooms. Dad recently enjoyed retrieving several toys from the toilet and giving them a 'super good cleaning'!
Kallen continues to try and keep up with Sissy and Brother both physically and vocally! Even throwing his weight around a bit letting them know who's boss! He's also figured out that being the youngest has it's advantages and it's disadvantages.
This winter brought much for us in the way of therapy and appointments. But it usually does. Therapy is going great and we are trying out a few new things as well. Our feeding/speech therapist will work with us while we're in physical therapy. We will focus on Kallen's chest and neck region to loosen up and strengthen those muscles, etc. This should bring about different sounds and hopefully talking. That area was isolated while Kallen was in the hospital not to mention his chest being opened 3 times. Kallen has protected this region since being home. Hopefully all will go well. We have even taken several dips in the therapy pool (94 degrees!) and it seems as though Kallen is really starting to enjoy it! I think it has helped tremendously! Oh how we LOVE our therapists; Miss Kristen and Miss Nancy! They are absolutely super!
Weight continues to be a challenge as Kallen is really struggling to gain. We're off of the feeding pump now and just doing bolus feedings 4-5 times a day through his feeding tube. We've all done so much research and so far Kallen is tolerating 'real blended food' better than formula. So, lots of high calorie but healthy food smoothies right now. Any ideas???? We'd love to hear from you! He's still not crazy about eating but does surprise us occasionally by trying things like mashed potatoes, salmon, green beans, etc. Only catch is that he has to feed himself not us feeding him! These seem to be the two things I continue to pray and pray and pray about; GAINING WEIGHT and EATING! You just cannot imagine how much I grieve those very few days when he did take a bottle. I treasure them like it was just yesterday that I was holding him in the rocking chair at the hospital and giving him his bottle.
So heart wise, we had our cardio follow-up with Dr. S. All went fine with the tests with the exception of the EKG. Kallen just absolutely hates stickers so no EKG that day. The ultrasound on his heart showed that his valve has a whiff of a leak still but nothing alarming. So another year will go by before our next visit as long as he continues to do well.
We're still monitoring his thyroid levels which currently show that he still needs a little thyroid med as a supplement. This is one appointment that we have every 3 months with blood draws. I hate to put him through that but it's necessary.
Other minor appointments come and go with really no news to report. They serve as follow ups though and are necessary.
Preschool with the Birth to 3 program has been great with Miss Susan and Miss Ann. God is absolutely amazing in His plan and work. I've said over and over through this journey with Kallen that time and time again the Lord unites and prepares His armies for His work with Kallen. This program has done great things for us and we had another 'first' a couple of weeks ago. Normally, Miss Ann and Miss Susan come to us at home but we had our first day in Preschool recently. I was a bit concerned that Kallen might experience some separation anxiety BUT NO! He did super! It was a quiet day with no other kids but it was a very successful day in that Kallen played with many different toys, met many people and even played 'kick the ball'. He had a grand time. It was such a special occasion! We'll wait to return until we are all over these icky cold bugs!
With all of this progress comes the need for Mom and Dad to make progress too; namely, getting some time out. We are blessed with Family, Miss Laura and Miss Jacquie for their devotion to us and Kallen. They are wonderful. We still call quite a bit to 'check in' but we're getting better. Kallen actually enjoyed a visit to Miss Luara's new home and did wonderfully well. I believe at this point, it's safe to say that it's Mom and Dad who have separation anxiety! HA!!!! HA!!!! However, at night, Kallen is still not crazy about sleeping in his own room. Oh, he's had a few good nights but we have work to do yet.
It's a joy to experience 'normal' growing and developmental milestones. We are still quite busy with therapy and other programs but to look at Kallen today makes it all worthwhile. Yes, we still have MUCH work to do, but WOW! We've all come a long ways.
In bible study a couple weeks ago, Miss Jean was sharing her feelings as she watched Kallen walk to the front of church by himself...that she was overjoyed and couldn't imagine a dry eye in the sanctuary. It is these times that I am brought to my knees before our Lord, thanking Him for entrusting us with loving and parenting children. His children. While listening to Miss Jean, I was reminded of this time 3 years ago (almost to the day) when Chris and I were faced with the very 'real' pain of almost losing Kallen. It just does not get any closer than the place we were at. The pain so intense and deep with no understanding. With all of the turmoil, fear, anxiety, desolation, unknown, and anger of that day in the hospital when Kallen suffered major cardiac arrest, Chris took my hand, led us to a quiet place to be alone, explained to me tearfully that we needed to give Kallen back to the Lord, that it was time. I remember screaming "NO! I won't give up. This pain won't let me." Chris tried to explain to me that we weren't giving up but that we needed to trust God, that only He could help Kallen. Let me tell you that the hardest thing to do was just that...give Kallen back to the Lord who so lovingly gave us him and trust Him with His Will as our human will fought against it. Chris prayed for us in a trembling voice filled with deep sadness and fear. I remember he opened his hands to the Lord and prayed, "My hands can't fix this...I'm the man, the husband, I'm supposed to fix this and I can't." We both experienced such helplessness at the feet of the Lord but also, in time, peace. A peace that is unexplainable with words. A peace that is felt within the core of who we are; our heart, our soul, our being. A peace that only God can provide, not man. I am reminded of the pain of sickness and the peace of miraculous healing daily. It is forever a part of us now, permanently imprinted and in it's own and very powerful way responsible for shaping our growth; our growth in the Lord. Out of such experience, our eyes, our hearts are opened to witness God's amazing work. I pray that He will forever be glorified. Amen! Yes, Miss Jean, God intended for us not to keep Kallen to ourselves but to share him with all who love him for it took a village led by the Hands of our Father, to bring us to this new place in life. A place of celebration as Kallen makes continued progress, experiences many more 'firsts', and walks to the front of the sanctuary to hear the special messages that the Lord has prepared!
September 12 September 2007 Update...Hi there! Wow, it's been a long time since our last update. That's ok though! We've been living life and enjoying it! What a blessing Summer has been for us.
Our big news for the summer was that we took 6 weeks off from therapy and appointments! It was a much deserved and needed break. It proved to be just what the 'doctor' or should I say the 'mommy and daddy' ordered! Chris had the opportunity to work in Eatonville most of the summer, so we took full advantage of it. We loaded up the RV and found our new home at Alder Lake Campground between Eatonville and Elbe. Over the 6 weeks there, it saved Chris hours in commute time (only a 7 minute drive to work!!!!) and allowed us more time together as a family! So cool! Thank you MVR Timber Cutting! While Dad was at work, Chase, Kallen and I enjoyed many hikes, swimming, playing, bike rides, sight seeing and meeting some of the fantastic folks that Chris worked with! (Yes, we mean you....the Abstons, the Hendricksons, Tom, Andy, Fred, and the rest of the crew!) In the evenings we enjoyed long, long walks and rides with Dad, bbq dinner, and spending time together! We were cleansed with the fresh air and moved by the majestic views of Mt. Rainier. Such a beautiful sight to wake up to! We were reminded daily of how our lives have been blessed through both good and hard times. Kallen did great! Loved driving his truck all through the campground! Quite a lil social bugaboo we have. Loved pulling up to the Camp Host's sites and chatting!
We enjoyed those 'lazy' days of August at home and resumed our schedule of appointments, therapy, sports and yard work. Now with school back in session, the same holds true. Our therapy regime will consist of Physical therapy twice a week, Feeding and Speech therapy once a week and Birth to Three Preschool once a week. That leaves one day for follow ups with our medical team; pediatrics, endocrine, GI, nutrition, cardiac and lab work. We met our new preschool teacher, Miss Susan and her assistant, Miss Ann today. Kallen appeared to take quite a liking to them and I feel as though we are off to a good start. We've taken a turn for the better in therapy and making great progress. All of Kallen's hard work is paying off and he is now enjoying it. Thank God for our wonderful therapists and their committment to us. They are SUPER! May they forever be blessed for their wonderful work! We have a lot of work ahead of us but we're all in this together. Kallen has started showing much more interest in food too...why, just a couple of weeks ago, big brother gave him a McDonald's french fry and ATE IT! I was shocked!!!! Not the best kind of food (my most favorite fry ever!) but certainly a good thing! We are still fully reliant on his feeding tube but it is a huge breakthrough. Our new goal is to be off of the feeding pump at night. That means a bit more food through the tube during the day to reach our calorie goals. This is a tough one, but we're all working together. Kallen is enjoying 'doctored up' blended table foods now and tolerating it pretty well. 'Doctored up' means we have to add some extra stuff to his meals to get those calories up. It can be quite a challenge at times. We've started overcoming the hurdles of separation anxiety at our church nursery and Kallen is doing better. He can almost stay at the nursery for the time we are in service. Of course, some days are better than others. Now we're working with Big Brother Chase who is having separation anxiety from Kallen while he's in the nursery. HA HA! He's getting better but boy is he like a lil Mother Hen with his baby brother. It is actually really cute!
We are blessed by those who hold us in their prayers and may they be blessed as well. We are hoping and praying that as we enter into Fall and Winter, we remain healthy and Kallen continues to get stronger and stronger. All therapies as status quo for now and the one new thing will be a visit to our heart surgeon to have Kallen's chest incision looked at. Before his last surgery in April, we bumped into Dr. Woods and he took a quick look to see what we were concerned about; when healing, it appears that his ribs healed over the top of each other just a bit. We decided to get through the April surgery and then approach this. So we will keep you posted. For now, we are relishing in 'normal' life. Although our 'normal' life consists of much therapy and appointments still, we are blessed to be on the OUTSIDE of the hospital. We are hopeful to soon see Kallen take his first step and start eating and tasting more and we are enjoying all of his talking. He is such a trooper and my lil HERO! His strength, perseverance and determination are AMAZING! Praise God! Happy Fall to Y'all!
May 14 May Update and Genetics newsGood Evening. It’s been a while since we updated our blog on Kallen’s Space! And a lot has been going on!
First of all, we’ve had our 3 week post surgery update and Kallen continues to heal beautifully! A bonus is that he has more of an appetite too! We tried following up with our cardiologist, Dr. Stefanelli, but Kallen had other plans. He wanted nothing to do with more doctors and nurses. This appointment was supposed to be the full meal deal; vitals, EKG, Echocardiogram. Needless to say, we barely made it through the vitals and when nurse Jen tried for an EKG, she opted not to push it as Kallen was having none of it. When Dr. S came in, it was all over. We thought Kallen had ‘white coat’ fears before but that was nothing compared to what we have now. I think he just needs some time off to grow and put to past what he’s endured. So we will try again in 6 months. In the meantime, we managed to barely make it through our endocrine follow up with Children’s. Thankfully, Kallen remains stable and there are no changes. Unfortunately, he has to have his blood checked at the end of June and I’m pushing for a finger poke rather than a venous draw. So far so good. We’re also just a few weeks out from wrapping up our Birth to Three program for the school year and guess what???? It looks as if Kallen will graduate with flying colors and his wonderful teachers Karen and Marti have referred us to PRE SCHOOL!!! OH MY GOODNESS!!! Dad and I have a lot to consider about this next move as we’re looking to hopefully place him in the Montessori preschool or the Coop preschool in Olympia. I’m sure that we will start off with short times and move up as Kallen tolerates. He’ll only be 3 and the last thing we want to do is overwhelm him right now. Lastly, we will check in with the MB GI clinic and nutrition this Tuesday for a routine follow up. Physical and Feeding Therapy continues with anticipated progress. We’ve also really enjoyed taking Kallen to church. Sometimes, it is a bit overwhelming but so nice that we can sit outside the sanctuary, still take in the message, and give Kallen a chance to regroup. All of this interaction is proving to be so good for him. And it feels so comfortable and right! So, the best Mother’s Day present I could ever be blessed with was Kallen learning to say Mama! Halleluiah! Can you believe it? This whole last week has been Mama this and Mama that and Mama everything! I’m working with him daily trying to teach him to say Dada before Father’s Day! We think he’s said it twice so far. Big brother remains on cloud nine that Kallen’s first word was Bru Bru. What an incredibly special bond. Still no Sissy but we’re working on that one too. He continues to get even more catty on his fancy fire truck which is all the more reason for a new fancy helmet! And knee pads, and elbow pads and if they made a full body pad, you can bet he’d have that on too! HA! And, if I could line the driveway with a foot of Charmin bath tissue, I’d do it! Barney has become our new best friend and as you can imagine, we all can sing every Barney song in our sleep! Barney goes everywhere; in the toy room, to appointments, outside, and even the poor cat knows what Barney looks like now as Kallen has been adamant about putting his stuffed Barney in the cat’s face at every given opportunity. Poor kiki, he’s probably having nightmares about a giant stuffed purple dinosaur chasing him! Now for the ‘New News’ At Kallen’s surgery in April, we pushed for a new genetics test to be run. It is a skin test that looks for chromosome abnormalities. Quite frankly, I had forgotten about until we received a call Friday at 5:30 p.m. from the Genetics Dept at MB. An abnormal result was found. It has a name….Trisomy 14 Mosaicism. It is a syndrome. We were immediately scheduled to meet with a Geneticist from Children’s and the MB Genetics folks to discuss the findings. Last Thursday, we met with these folks. It was a tough few days leading up to the appointment and a tough appointment to go through. So much anticipation, many questions, confusion, worry, fear, etc. Thank you for surrounding us in prayer. Again, this support was felt. Before the appointment, we did look online for any info we could and quite frankly, there’s not much. What is there, is a bit vague. First thing we were taught is that there are hundreds upon hundreds of syndromes and in our case, many unexplained chromosomal abnormalities fall into a syndrome. So, the big question: What is it???? Trisomy means 3, 14 refers to chromosome #14 and mosaicism simply means ‘affecting some cells’. In a nutshell…in some of Kallen’s cells, he has 3 copies, rather than the normal 2, chromosome 14’s appearing. The most common occurrence with this syndrome is congenital heart/lung defects, other vital organ issues/defects, failure to thrive, acid reflux, short stature due to growth trouble and in severe cases, some deformity. This syndrome is RARE, with only 19-20 documented cases in ALL of the medical cases/journals and wouldn’t you know it, Kallen is the first one these physicians have ever seen. It is suspected that there are more cases that have gone undetected. In fact, we learned that any number of us is probably born with an abnormality. It is just probably so small, that it is not of issue. Chromosome abnormalities are tested in three different ways; blood, skin, and organ tissue. At day 2 of life, we tested Kallen’s blood and it was 100% perfect thereby prompting no add’l testing. However, after visiting with the geneticists, decisions were made to follow up with a skin biopsy test and through much pushing on our end and the team’s end, we were able to get approval to run it in conjunction with Kallen’s surgery. This particular test is still actually waiting approval to be widely available and that will happen very soon. It is a very thorough test and it reflects the percentage of cells affected by chromosome abnormality. In Kallen’s case, 20% of his cells were suspected to contain a third copy of #14. Optimistically, this is a low number and this syndrome now explains all of issues we faced that presented themselves after Kallen’s birth. How did he get it and is it genetic? No, it is not genetic meaning that neither one of us gave it to him because we might have it. However, if either parent or family lineage has an increased risk or disposition to a chromosome abnormality, Kallen is at risk. How that chromosome abnormality appears in his body during conception and through development is anyone’s guess. In his case, Chris or myself most likely have a disposition to some sort of Chromosome abnormality and therefore, we will undergo genetic testing in the very near future. Our results, at this point, won’t change Kallen’s management but it will be interesting to see what comes up. The consensus of the genetics team is that Kallen probably started out (in conception) as a full trisomy 14 and if that had continued, he would not have survived. You cannot live with a full trisomy 14. It is suspected that very early on in development, a phenomenon occurred known as cell rescue. This basically means that the good cells attacked the bad cells (those containing 3 copies of #14), thereby keeping the percentage of cells affected down. Hence, the 20% discovered on his test. So now what? Where do we go from here? Is there a cure? Treatment? What does this mean for Kallen’s future? We had all of these questions and more. It’s so rare that the geneticists really didn’t have much to go on. There is no cure. Treatment consists of managing what presents itself. Correcting what is wrong. In Kallen’s case, we corrected his heart with surgery, his lungs have grown stronger, we’ve corrected the acid reflux by surgically performing a fundoplication, and the malrotation was corrected surgically as well. EARLY INTERVENTION is key. We’ve been engaged in this all along with physical, feeding, occupational therapy and the Birth to 3 program. All of which focus on gross/fine motor skills, cognitive development and so on. Most importantly, we learned that in these types of situations…YOU TREAT THE PATIENT NOT THE SYNDROME. Now that Kallen appears to be doing well, we continue working on the things he needs to and continue letting him grow. One thing we now know is that he will most likely grow slow and at times this very well may be a struggle. BUT, because each patient is so different, that’s not 100% certain. Chris and I feel that the most important thing we took away from this meeting is that, quite frankly, this is called a syndrome because of the slight chromosome abnormality and organ findings. Other than that, the course of action is to correct what is wrong, which has been done surgically, AND watch Kallen. He will tell us what he needs. Even more important, is the opinion of the geneticists after the evaluation of him; upon entering the room (a very large room), Kallen was zooming all over on a ride on toy, no hands and yelling MAMAMAMA! Everytime, he rode up to the table of toys, he would stand up, reach and play. He interacted with everyone beautifully using his voice and sign language. At first, they were a bit perplexed as this child that they first saw was not the child they were expecting. They shared with us their optimism and were pleased as punch with Kallen’s progress so far. Lastly, we shared our concerns. Although Kallen is 2, he has only just begun to form a few words, not walking yet, etc. They were very frank with us and made it very clear that everyone MUST take the syndrome out of the picture right now AND CONSIDER what Kallen has been through….ALOT for his young, young age AND he is right where they would expect him to be given all of it!!! That was encouraging! They reiterated that most of the discovered issues have been taken care of and now it’s up to Kallen to keep on going. And for us…to keep him involved in the programs that are helping him in catching up!!! Kallen actually passed all of their tests and got an A+! He was so excited and enjoyed all of the High 5’s! So, it’s status quo for now. We’ll continue following up with his heart and endocrine issues as those specialists see fit. We’ll continue to monitor his growth, height, head circumference, etc. And I am now actually relieved with constantly being hounded to push, push, push more calories to get him to grow because the results actually explain that he is not going to be 6’2 and that his current growth charts show nice progress. My Grandfather, who just turned 83, shared his thoughts with me after learning of the test results and I think he put it best; Kallen is fine and he’s going to be fine. I just know! Amen. And to top it off, when he was sharing the results with his church family, his pastor, Steve, shouted, “Hey, what’s wrong with being short?” Anyone who knows Chris and I know that we certainly didn’t give Kallen a chance in the height department! HA! Most importantly, we thank our Lord for deploying his army of soldiers around Kallen during these past 2 1/2 years and blessing him with continued health and strengthening. WOW, may he forever be glorified! We thank him strengthening the fibers of our marriage that frayed and for the many things that he has taught and shown us throughout this journey. Bless all of the hearts whom have been touched and may we all continue to grow in our relationship with Him! AMEN! April 16 Post Surgery UpdateTrit and Chase have been in WA DC with Nana and Papa Plews (and all of their cousins, Aunti and Uncle too) to attend their Great Grandfather's Funeral at Arlington. They phoned almost daily and have enjoyed some sight seeing as well; Congress (Visited with Norm Dicks and staff), Library of Congress, Smithsonian, Nat'l Monument, Gettysburg and several other sites and some shopping as well. They are due back tomorrow. Praise God for this opportunity! Please keep them in your prayers for safe travels home. I know Kallen is very much looking forward to seeing his Sissy and Brother!!!
Grandma Carol (Chris' Mom) has been here for two weeks and what a wonderful visit we have had. What a blessing! She leaves tomorrow and we are all sad to see her go. BUT, she has a life to return to in Colorado so we must let her go...hopefully she'll be able to return this summer or we'll be able to come her way for another visit. I have truly enjoyed and appreciated all of her help! We enjoyed a weekend trip over to Yakima, Ellensburg and Teanaway/Cle Elum. Kallen was a super traveler and seemed to enjoy everything as much we did! WE took in several overlook sights this time, enjoyed visiting with the YMCA staff (see next paragraph!!!), visited the Sagelands Vineyards and Winery (Absolutely beautiful!!! Wonderful people!!!! Thank you to the Y folks for suggesting it!) and even partook in a Miner Burger at Miners in Yakima! Wow, if you're looking for a HUGE hamburger that tastes great....might check them out when you're in Yakima! Kallen was so busy taking it all in! Even got to see several herds of elk/deer (Kallen wasn't quite sure what they were...we think he thought they were oversized, giant kee kee's!!!), visited the campground that we have enjoyed Memorial Weekends at and enjoyed driving through the CWU campus.
It's that time of year again to register big brother Chase for YMCA Camp in Yakima. The Yakima YMCA is a super facility with super folks! WE just can't say enough about them! They own and operate Camp Dudley which is located on Clear Lake (just the other side of White Pass). Such a terrific camp with lots of awesome opportunities! Chase loves it! We picked up his candy to sale which helps earn his way to camp and for the Y. So, if you're interested in purchasing some candy, please let us know....we'd love to get some to you! All candy is a $1.00. The more we sell, the less goes to our waistline!!!!! We have to have such will power during this time!!!! UGH!!!
We now prepare and embark on SEVERAL follow up appts through Mary Bridge, Childrens and our Cardiologist. Many of these appointments are yearly follow ups and they all seem to come at the same time. WE will be busy the next two weeks. I have learned to trust our Lord with all of the appointments and take each day one day at a time. Kallen is such a lil trooper!
We will update after all of the follow ups. Don't forget to check out the photos of our weekend trip!
Grace and Peace to All.
Love Jeri and family.
Thanks for visiting!
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