Hi everyone, I wanted to let you all know we have re-located to Houtson, TX. This move was 100% for Kalev, so he could receive the best medical care. As you all know we have been through a lot. Kalev is thriving and slowly but surely making progress. We have been told there are a lot of conflicting diagnosis as well as treatments that we were receiving back in Nevada. We came at the right time and his Surgeries and any-other treatments will come from Texas Children's Hospital. Kalev's abdominal incision has still yet to 100% heal. This is always concerning since he is 20 months of age. The initial incision was done at 2 weeks of age. We know he does not have any healing issues that have been found. As we meet with our new team, more tests are being scheduled, and that means more medical bills we just cannot afford. We were unable to purchase more medical supplies /equipment this month due to a current bill. Thankfully we have enough supplies on hand to last the month. It is always concerning because he absolutely needs them. Kalev also is extremely small and grows at rate that is barely measurable. He is now 27.5" long and that took quite some time to get to. We are in the process of seeing if Texas will approve us to get SS or any other supplemental funds for things like this . It is a long process and it could be several months, and at the end of that could be denied. We have an MRI that is mandatory coming up and with that we have to have sedation for. It is dangerous for him to have it, but we are confident with our new team he will make it through with no complications. Our insurance covers a good amount of it but we have a large bill (over $4,000 we owe just for that) we are unable to pay and need help with. Along with many others that are coming up. We expect our go fund me financial request goal to help us with the majority of our medical bills, equipment, supplies, therapy and surgeries for 2020. We ask you all to please reach in your hearts and give something so we can get a proper diagnosis for our son so he can receive the proper treatment. This is not something we take lightly and we really need our request to be shared as much as possible to reach our goal and be able to get Kalev the care he needs desperately and deserves. Kalev hold a special place in the hearts of those who meet him. They see how intelligent he is in his eyes and how he wants to move and respond, but is limited at this time, but that changes daily and we know he will continue to learn and grow.
Hi everyone, it has been quite sometime since we have last updated everyone on our Journey with Kalev Boaz Chai, can you beleive hes 17months old!? Thank Gd he is improving each day and continues to baffle Dr.s.
Kalev still has the aid of a nasal feeding tube, we are working so hard with therapists to have him drink independently, and move onto actual solids. He is able to eat baby purees now and that is a miracle. His surgical wound across his abdomen hasn't fully healed yet, but nearly there (his body rejected the mesh used to attempt to close him up). I cant believe where we were last year as opposed to this year. We are so blessed to have so many prayers and GoFundMe financial support from all of you. As most of you know Kalev suffered a fairly extensive brain injury as well as a diagnosed rare disease ( optic nerve hypoplasia) . 9 surgeries to help save his life when he developed a common NICU disease/deadly infection called NEC. to break it down in layman's terms, his intestines were being eaten away and quite rapidly. Each surgery was life saving but also traumatizing emotionally for his family but also physically for him.
We are very lucky that the financial support aided in getting our son the therapy he needs to build new pathways and ultimately heal his brain as much as the good lord allows. You see the brain has plasticity that allows the brain to change continuously, most importantly at this early age it is very important in order to gain as much brain function back as we can. Early intervention is the key to success in cases like Kalev's. As one grows older that plasticity goes down considerably. We have been lucky to also have the money raised here thus far aid in medical necessity and products to care for his abdominal wound and his ostomy supplies. thank you all again for the generosity you have no idea how much this has helped us.
Because Kalev was so critically Ill the Drs had to focus on specific things with him. Now that we are out of the critical zone, we have had to look at the other issues that need attention. Kalev for non-detected cause or diagnosis has some fairly major skeletal abnormalities (small stature, pectus carinatum, is when the chest bows outward.) One of the major skeletal issues is hip dysplasia and he will need 1 if not multiple surgeries for that. It is still very scary since we already know he will need an ostomy/stoma reversal surgery first. All of which are going to be intense for all of us, and could pose life threatening complications as well.
Our funds for Kalevs care from GoFundMe have run dry, fortunately all has been utilized to his aid, thank Gd! Each one of you played a huge roll in getting my son to where he is now. It truly has taken a village and we are so so grateful! We all continue to ask for prayers, they are being heard and we no longer live by the laws of nature when it comes to our son, but truly see Hashem (Gds) hand in all of this. Gd is above nature and has preformed outward miracles that we see each day. It is with unease that I ask again for any financial support to continue to aid Kalev in his therapies and medical supplies as well as upcoming surgeries and specialist appointments as we head into the new year. We did not quite meet our goal yet, and I know with Hashems help we will. To end this update, Kalev has begun to laugh, smile and work really hard to roll and beginning to want to crawl. we are headed to a 3 week intensive (brain, PT,OT, Speech, Feeding) therapy session in LA ( generously sponsored). These 3 weeks will Gd willing enable Kalev to drink without a tube ( if he cannot, it will be an added surgery to place a G-tube) as well as gain more mobility (rolling over, hand to mouth etc. Better cognitive function with special therapies). With your support we can continue to get the care Kalev needs to be as independent as possible for his future. We love you all! As always your messages touch us deeply and we are excited to see what the New Year brings.
***This post was created Created September 27, 2018**
My Son Kalev Boaz Chai was born May 19th, 2018. Upon coming into this world at 37 weeks, he had medical abnormalities from the start. Low blood sugar was our initial culprit to being admitted into the NICU at Summerlin Hospital in Las Vegas, NV. Within a little over a weeks time my son had contracted a deadly disease called NEC (necrotizing enterocolitis) this is a rare thing for a full term baby to contract in the NICU. He went from fairly healthy to being rushed into emergency surgery to resect any dead or infected intestine. Kalev went through 9 surgeries one right after the other. Each surgery we were told the surgeons did not think he would make it. It was our worst nightmare! Because of the global injury he sustained during his surgeries or the life saving medicines following each surgery, Kalev is still in the NICU (4 months and counting). Most babies after being closed up from surgery would take 4 weeks to heal, Kalev's body did not. We have a team of wound care specialists helping to heal the incision wound and still hoping it closes soon. Kalev is on continuous feeding and only aloud breast milk, I have had to ask breast milk donors to help since I am unable to sustain him with what little i am able to pump. He has not regained the ability to eat orally as of now. His intestines are tolerating his feeds but we are still making progress to hopefully full feeds. There have been hiccups along the way. Kalev's injuries unfortunately do not end with his intestinal issues and poor wound healing. He suffered brain bleeding as well as some ocular damage that will eventually present itself as he grows. We wont know exactly how effected he will be. The Dr's have run many tests to try and figure out why his body is not healing properly. Our Dr's in Las Vegas have done all that they can and as of today we are being transferred to UCLA to try and find the source of Kalev's unique situation. I must swallow my pride and feelings of insecurity and reach out to anyone who would be able to help us in our time of need. Many people have reached out to ask what we need. I am finally able to say that we are in need of financial assistance. With the medical bills increasing and now I will need to stay in LA until we are released from the NICU. I have a job but am unable to work full time hours due to the time I need to spend with my son in order to help him the best way we can. I will have to spend a large time away from my family and my only support system. This is the most difficult time in our lives and I so wish it to be over and my son to be back in my arms at home where he belongs. We do not have a go home date due to the complications and surgeries needed. I would like to thank anyone who has already helped in raising $2,020 for Kalev from my amazing sister in laws go fund me. We are in need of more support in order for me to stay in LA. I will list the needs and where the money would go once raised. *** Update we have gone to LA and back. I was able to live there for nearly a month to be with Kalev. Our next trip in several months to a year after Kalev's healed from his next surgery will be to the children's institute in Pittsburgh PA to receive therapy for his brain injury. We will need to exceed the first goal in order for us to live there for a couple of months while receiving therapy. Needs while in PA when it arises such as transportation to and from hospital, food and basic needs. Accommodations Medical bills (includes therapy, hospital, surgery, breast milk needs if and when necessary) Rent and Utility help to offset my not being able to work and provide excess funds toward standard living cost.
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