Update!!

Well it’s been a while since we have updated you all on Betty and we are so sorry about that. This post will be long so be prepared and go grab a drink and find a comfortable spot to sit.
Betty went in Jan 20th 2022 for her heart cath procedure. She will be getting these yearly for the rest of her life. Everything came back normal with no rejection present. They took her off of one of her meds and lowered her rejection medication. We are happy about this due to it causing secondary issues (diarrhea).
Her transplant team is so happy with how she is doing and progressing. Betty took her first step Feb 9th and has not stopped since then. She has been nicknamed Little Miss Independent. Now we have to childproof the house!
I would like to say that all has gone well since transplant but in April 2022 Betty got hit with 2 different viruses and was hospitalized for 4 days. Following that we dealt with extreme diarrhea and after some test results showed she had GI inflammation. Betty’s GI Dr. thought it was important that Betty got in for a Colonoscopy and Endoscopy to see what was going on. Betty’s GI tract was so inflamed that the Dr. had to back out and cancel her colonoscopy. After talking the Doctors believe this is either rejection medication induced or IBD (we pray it is not). Come June 2022 Betty got really sick and we rushed to the local ER. They believed she had an intestinal bacterial infection. Being on the other side of the mountains we did what we knew would be the quickest thing for Betty. We drove her straight over to Seattle Children’s ER where her Transplant Team and GI Team were waiting for her. Of course they were okay with this and she was properly discharged from the other ER. We had a long 5 days with a successful colonoscopy this round and some more genetic testing. Some time has passed and it is now July and we just got a call from Betty’s GI doctors with the biopsy results. After talking with a pathologist, another GI Dr. and reviewing both colonoscopy and EGD they have come to an agreement that they believe Betty could have Infantile Very Early Onset Inflammatory Bowel Disease or in short term VEO-IBD. This was the news that we did not want to hear. She already made it through getting a new heart and has been making great strides in her development. What does this mean? Crohn disease (CD) and ulcerative colitis (UC), collectively known as inflammatory bowel disease (IBD), are chronic, idiopathic, destructive disorders of the gastrointestinal tract. Neonatal or infantile-onset IBD develops in less than 1% of pediatric patients. What form of IBD Betty has we are unsure of. Right now the Dr’s don’t know why Betty could have this. Genetic Doctors are involved and are running tests to find out if this is genetic (test came back and it is not). The Dr’s have also seen this occur with transplant recipients and are unsure why this happens and it could be the immuno suppressants. We will see Betty’s new GI Dr. Betty Zheng (I know right same name!!!), she is the program director and Advanced Inflammatory Bowel Disease specialists.
Betty’s last cardiology appt went great (October 2022). She has now reached the 15th percentile for her weight (21.5 lbs). Her heart function looks good and labs are looking good as well. Next appt is in November. Labs about every other week. GI: her new diagnosis of VEO-IBD has its challenges. We have pulled most dairy from her diet and are trying alternatives. We are still dealing with loose dark stools but not 15 a day. There was a med increase so we are hoping that will help her out. Next appt is November. OT, PT and Speech: Thank god these appts are at home!!!
Betty is doing well and has mastered the stairs with full supervision. She loves to go for walks and pick up rocks along the way. We are working on her sensory issues ( hates grass or sand or anything on her hands and feet). Betty still is not talking. She babel’s a lot and will say dog or dada a few times a day. We are working on sign language with her. So far she understands the sign for change (diaper). She has started to grab my shirt or pant leg to take me where she would like to go.
Dermatology: Still dealing with psoriasis and eczema but the steroid creams are helping.
Feeding Therapy: is going okay. Betty still does not want to take much by mouth and when she is having an IBD flare up we notice she almost completely stops taking any by mouth. Recently she started taking bites of Bosket English Muffin bread!
Dec 5th 2022 Betty Turned 2 and we had a wonderful birthday for her and her little buddy Bristol came over to help celebrate with her. Her Aunty Glenna Made homemade cupcakes for her. We are so blessed to have a little girl with us another year. We can’t thank everyone for all the love and support through this all.
Happy New Year!!! Jan 19th 2023 Today marks 2 years since Betty received her 2nd chance at life. There will never be any words that will express how grateful we are of the donor family and the choice they made.
March 8th Betty just went back for her yearly heart catheter biopsy at 2:15pm. We were scheduled for 10:00am but the surgery that happened before hers took doctor’s longer than they thought thus delaying hers. She will be back for about 2 hours and then in recovery for fours. Because they access her heart through her artery in her leg she will have to be on her back for those four hours. They plan to keep her mostly sedated for that time due to her age (if she moves her leg the timer starts over). This yearly exam will tell us if her heart is going through rejection, the pressures in her heart, how her arteries look (heart transplant patients can develop transplant coronary artery disease which is not plaque but inflammation), EKG and echocardiogram. Thank you all for the continued support and love!!!!
Betty is out of surgery and did very well. Her pressures in her heart look good and her coronary arteries all look great. While in recovery they will do her EKG and echocardiogram. Also while under the, ear doctor cleaned out her ears. After the 4 hour recovery Betty will be discharged and we will go back to the hotel for recovery and head home tomorrow if her site looks good.
April 2023 was a rough month for us. Betty came down with not only the RotaVirus but the Norovirus (again). We spent 11 days in the hospital with her before she got well enough to get home. She is one tough little girl and has gone through so much.
June and Sept both transplant check up appts have been great. She has had no sign of rejection on her echo’s and her ECG’s look good as well. Betty has now been taken off of her blood pressure medication and we are monitoring her at home. She is taking two immunosuppressant medications, magnesium, iron, vit D, and low dose aspirin. Medication is done 4 times a day and her feeding pump is done 3 times a day. Betty’s oral intake is very limited to oral aversion but her favorites are apples, white cheddar cheese its, bacon, saltine crackers, and raspberries.
Some other news that we have not announced to everyone but have with close friends and family is that Betty was diagnosed with moderate autism back in March at The University of Washington. We knew Betty was going to be delayed due to everything that she was hit with from birth, to transplant, opioid wean, oral aversion, and so forth. As Betty started to not reach milestones and then started to regress in her speech and then stop making eye contact we knew more was going on. Her therapists noticed as well and recommended we see her pediatrician for a referral for an autism evaluation. Fast forward to a very long wait list and even signing her up for a study group in the hopes of getting her in sooner. Betty is attending Speech Therapy where she is learning to use a PEC book to communicate (picture cards). Most recently we got approved for a tablet that has different PEC programs on them that we are learning how to use. Betty also attends Occupational Therapy for her sensory issues and oral aversion and Physical Therapy for some delays in movements. We are looking at starting Betty in a 12 week program called ABA Therapy ( Applied Behavior Analysis) in January where she will be in therapy 4 days a week for 3 hours a day. Through all of her appointments, procedures, hours of being stuck in a car and doctor offices, Betty always has a smile or a giggle. We are so blessed to have her and thank god and words will never be enough for what the donor family has done for our family. Bettys next appointments for follow up transplant cardiology, nutrition, and GI will be in December. I will make another update then for you all.

Hugs and Loves from Betty, Lester and Andrya.

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