TEAM NOELL!!

I apologize for the major lapse on updating everyone, a lot of life happened.
Walker was hospitalized two weeks ago due to what we thought was a pancreatitis flare. He had more extensive testing done including a MRI, MRCP w and wo contrast and extensive blood work. Walker has Refractory pancreatitis, PRSS1 gene mutation, Exocrine pancreatic insufficiency, on PERT but still non diabetic. With that being said, he will need a total pancreatectomy with islet autotransplantation in the next few years. We were relieved to learn that his pancreas is too "healthy" for a transplant right now so were focusing on him trying to gain weight by taking his CREON before every time he eats and staying healthy.
George had an unbelievable month with all of us after getting his IVIG back in December. He should be receiving the IVIG at a much higher dose at least once a month for a year. We are now on our third Doctor {Neurologist} paying out of pocket and traveling to Columbia, MO at least twice a year to obtain the best care that they deserve. George is scheduled for a MRI with and wo contrast under anesthesia, extensive blood work and port placement at the end of April. He will then start receiving IVIG at home monthly and I will continue to home school.
Lastly, I have also been receiving care from Dr. Alqadri. I recently had an MRI w and wo contrast, extensive blood work and some in depth psychological tests. I still need to do my gene testing but so far we do know that I also have autoimmune encephalitis (AIE) and since getting Covid in November 2022, I've had so many new debilitating symptoms that I thought were all do to stress with the divorce, boys health and loss of my daddy. Apparently Dr. A, noticed some odd behaviors when we met her in January and recommended that I get an evaluation so I can stay around to take care of my family.
We are all so grateful for all of you that continue to pray for us. Thank you sincerely for the donations, phone calls and support. We wouldn't know where we would be without you all in our lives. You never expect to be the ones who need help so with so much love and gratitude we thank you.

Hello Friends,

Another twist in the game of life for Team Noell. Unfortunately, a dangerous amount of mold was found in Laura & Sandy's house. This has a significant impact on Pans/Pandas kids and their progress. Thank goodness their amazing landlord took this seriously and had an insurance adjuster sent over right away.

The adjuster found the house unliveable until the bathrooms, a wall, and flooring were torn up and replaced. Terrible timing, but when is it the right time to be displaced from your home? Due to the kindness and generosity of the amazing friends in the lives of Team Noell, they have thus far had places to live (they are now going on week 3) but are looking at at least another three weeks before they can get back in their house.

They have to bear the financial burden of 'nomad living' and the emotional burden of handling the kids when George is experiencing a challenging period of ticks and discomfort.A wonderful family friend was kind enough to allow Laura and George to stay at their beach house next week while Walker and Sandy are still finalizing their plans. They hate to be separated, but these unforeseen circumstances don't give them a choice. They don't have any plans after that, so any help you can offer is greatly appreciated!

Always grateful,
Team Noell

Dear Family and Friends,

George’s recently met his new doctor after a 15-hour road trip with Laura to Missouri. Dr. Aquadri is a pediatric neurologist who is the director of an autoimmune clinic in Columbia, Mo. Laura was referred to her by another P/P mother who has four children with this diagnosis; there is a coordinator who is in Richmond who arranges testing, telemedicine appts., and in-person appts (1-17-24.) They are setting George up for a port to be placed to make the IVIG infusions less painful, have additional testing, EEG, EKG, and a new blood panel, etc. Just yesterday, Laura decided to homeschool for the foreseeable future and enter George into some programs which are activity and on-line based. He has been out of school for 14 months, which is hard on him and the family; the goal is for him to return to school eventually.

George connected with Dr. A and said, “She gets me." He is enthusiastic about hopeful improvement over time. For the first time, with the inability of the few doctors, including VCU, to treat George, we have hope.

As if this isn’t enough, during the major renovation and reconstruction of my upstairs bathroom and downstairs repair and restoration, black mold was discovered where the leaks in the bathrooms occurred. Thus, all of us have had to make other living arrangements because of the negative effect on George and Walker in particular. When George comes into the home after being away, his behavior and tics immediately surface; they are not a pretty sight. Thanks to the gracious offers to stay with various friends, several nights at a hotel, etc., we have made the best of it, but inconvenient and distracting for all of us, especially for the boys.

Laura and the boys are exhausted and overwhelmed with these new problems. It will be great when all the construction is complete, but that is still weeks away; my bathroom may be done by Saturday. Jason has had the boys visit more often than his normal visitation, which has helped. Other friends and family have been so gracious: our church family has been so supportive, as have others. If you happen to know of someone willing to rent their second home or apartment by the week, please let me know! I hope this has clarified what has transpired since Christmas; it is an ever-evolving situation. Thank you for your prayers, many acts of kindness, and donations to the Caring Bridge site.

Love,
Sandy, Laura, and boys