Zoo crew

07/12/2023

PBMs are going to get away with their practices if Congress does not pass HB 2880, the Protecting Patients Against PBM Abuses Act. Jon Tester, Senator Steve Daines, Representative Matt Rosendale and Ryan Zinke make sure this bill comes to a vote.

18/03/2023

28/02/2023

I have not posted in a while on this page due to life blowing up medically in the Zoo household. But what a great day to post. The day before Rare Disease day!

Our family is rare, like I have stated before all four kids have arthritis. Mags has amps, and severe hyper-mobility, Hudson has immune deficiency and reynauds disease, Carter has a chromosome mutation as well and collagen six depletion disease and then there is Bella.

Bella has been put through the ringer this year and has finally given me permission to share with you all. She not only has immune deficiency, arthritis, and in the past few months has been diagnosed with rumination syndrom, needs to has iv fluids most days to keep hydrated. She also has severe endometriosis, Adenomyosis, as well as has a tumor on her olvery. She has been to Mayo Clinic twice this year, and is now headed to Uw medical on Thursday to have surgery to remove the tumor. This is a lot for a soon to be 20 year old physically and mentally.

Please wear your bright colors tomorrow in support of The zoo and other people who are struggling with rare diseases.

17/05/2022

I did a thing today! I learned how to access Bella’s port so she can do hydration infusions at home. I have learned many medical things for my kids. Put in an ng tube, change a gtube, put meds in a pic line, and many different machines. However, todays was the most stressful. The thought of it caused me so mucn anxiety. The nurse was great and was very patient with me. I learned a sterile environment is a whole new level of clean and once you touch something you are not suppose to you have to throw it all away and start over. Bella was so calm and encourageing. And the best thing is I hit the port first try! I was so proud of myself. The other Zoo members on the other hand didn’t really care when I tooted my own horn and said “that’s nice.” But I am going to blow my horn loudly because I know how difficult a port access can be. I have watched bella for years have it accessed and I watch carter for four years have his done. I know how hard those nurses worked.

Yay me! Yay to being able to keep Bella well hydrated while she heals from whatever her stomach decided to do for the last 30 days. Yay to modern medicine to help my children live.

24/04/2022

Bella is on day 13 of throwing up and not keeping anything down. As of yesterday, she has lost 11 lbs. On Thursday she and I went to Kalispell to have her undergo scopes to find out why she is throwing up. Still no real news, all we know is it is getting worse. The doc yesterday was trying to decide to admit her to the hospital or not. She said she couldn’t be admitted because she had her dog at home that no one was taking care of and she needed to get home ( definitely not true but a whole different perspective comes out when you are waking up from anesthesia. ) Needless to say we are home. Her dog has really not left her side and continues to support her as much as he can.

Parenting a chronically sick kids comes with so many ups and downs. Currently we are at a down. Brian and I are up with her at night when she is throwing up, making tea, getting fluids for her and just trying to be her support even though we can not help her. It is the most defeating feeling not to be able to help her. Luckily she has a great gi doctor that allows us to text on Saturday night and problem solve meds. Hopefully better days are ahead quickly.

27/02/2022

The Zoo Crew is rare. All kids have Juvenile arthritis which over 300,000 kids have. But then you add Bella with Common Variabe Immune Deficiency; Maggie has Amplified pain syndrome and Connective Tissue disease; Hudson also has Common Variable Immune Deficiency, Raynaud's syndrome, and connective tissue disease; and last but definitely not least Carter has Collagen Six Depletion, mutation of TTN gene as well as connective tissues disease.

With all of these put together WE ARE RARE! Everyday we are fighting something, the common cold is nerve racking and can cause many issues. A runny nose or headache is not just normal. It always lead to something different. We travel to doctors, we see multiple specialist, and many hospital visits with tests. Each kid is on a daily regime of at least 10 meds a day to keep them as close “normal” as their peers when it comes to health. A five day a week school week is so exhausting and most Often one kid is always home on any given day.

We are rare we are special and we are fighters. Tomorrows is RARE Disease Awareness day. Tomorrow Carter will be giving a PowerPoint presentation that he made about his disease to his class to spread Awarenss. Join the Zoo in wearing Bright colors or Zebra print tomorrow show your support for the Zoo Crew!

11/01/2022

Brian and I get asked “how we do it?” All the time. We also get asked what is it like to be parents of kids likes ours. Well let me tell you, we live in a constant stressed out mode especially when someone is sick in our house. We talk constantly how a common cold in our house takes a kid out for weeks. This is why we are super diligent on disinfecting, masking our kids (even when we weren’t in a pandemic), and just being aware of people around us coughing.

Case and point. Bella has had a rough go of it since October. She has had pneumonia twice, double ear infections three times and constantly sniffling and coughing. This is all secondary infections from the “common cold.” So of course something a little more harsh goes through the house and it takes her to a hospital admittance. She has RSV which for any other adult does not do much but be a coughing cold. But to Bella is stressed out her heart and made it work overtime.

This is why a small virus is scary, but add pandemic. All I could think about last night was how many isolation rooms were around us in the er. And we heard hacking coughing all over. Wash hands, mask up, vaccinate. Think of families like ours you are protecting .

30/09/2021

The infusion that these two get to boost their immune systems are starting to show small traces of Covid antibodies. This is what they need because their own bodies don’t make them. If you are vaccinated, please consider donating blood. You could be saving an immune compromised persons life.

09/07/2021

24/06/2021

Working upper body muscles. Goal: to be speedy fast for sledge hockey in his sled and to conquer inclines by himself.

18/03/2021

On this World Ja day, the Zoo’s life is dictated so much by Ja. Every Thursday Carter gets up to do an early early pt at the pool before school and work. Then after school he goes into his second round of MRIs in less than a week. Hudson has telemedicine of later today and Mags is headed to the doctor after school because of meds doing crazy things to her system.

Arthritis doesn’t take a break. It doesn’t ever leave the back of our minds and we are always worried about the type of damage that is happening to the kids bodies. This is not old person arthritis. This

27/02/2021

Wear your stripes tomorrow for Rare disease day. Please do it for the Zoo! We are Rare but we are fighters.

24/02/2021

Exciting day for this immune compromised kid. First dose of the Covid Vaccine! Now 3 out of 6 Zoo members are vaccinated. (She was excited, however she is feeling very sick due to her immune infusion meds being grounded in Tennessee the last 3 weeks due to weather. So her immune system is running on fumes hence the blanket and hood in the car.)

18/02/2021

Proud of My Bella today. She usually doesn’t say much, but today she stood up for herself.

She was at a foot doctor today. Her feet are having an arthritic flare as well as some infection . Bella said “I don’t know whether the pain is from the arthritis or not.” He proceeded to tell her she doesn’t know what arthritis pain feels like. She is too young. Bella did her laugh that means-(you are so wrong and I will tell you why)- she proceeded to tell him she did have Arthritis in every joint and DOES live in constant pain. He said - “well you are not deformed yet.” She said “ well I am on meds to not get deformed. But I do know what the pain is.” He proceeded to back pedal..... to be in medical field and still have no idea. READ HER FILE doctor before you see her. She came home and told Brian she is cured and does not have Arthritis because of her age and not deformed.... we just shake are head. Still so much for people to learn.

05/01/2021

I was able to do a thing this morning! I was so relieved to get the letter in the mail that said I qualified for phase 1a. Brian sadly couldn’t get it because he according to the state is not the kids “personal caregiver.” 😆 However, one of us is better than none. I know it is not a solve all. I know I can possibly still bring the virus home to the kids. But what it does is provide me relief so that I can caregive my kids if one of them gets it. I won’t be able to get it and I will be able to give 100% of me to my kids.

What a relief! Wear your mask, social distance and vaccinate when you are allowed. You are playing a part in keeping the Zoo healthy.

25/11/2020

As I sit in the hospital with Bella today while she completed her recurring infusion, I think about all the medical procedures, equipment and medications the Zoo uses to keep healthy, moving, sleeping, and breathing. We have a lot of be thankful for this season.

Bri-guy was with Hudson yesterday at the hospital while Hudson received his infusion. Hudson has an infusion every four weeks to boost his immune-system. He also added another weekly infusion this month to boost his iron (he only has to get four weeks’ worth). With these two infusions, we can tell his energy level is increasing and he is starting to return to his funny self, have more energy and start eating again..

In addition to the infusion she receives at the hospital every three weeks, Bella has two additional infusions per week that we do at home to keep her healthy, moving and her body from fighting itself. Without these meds, she would be so much worse and not functioning in life.

Carter has added to his daily medical schedule a feed pump. We have it hooked to his gtube twice a day to give him much needed water and nutrients. With him not drinking, he is not coughing, wheezy, or choking on food. It has changed his mood and his energy levels as well. He also finally got a bi pap machine for him to sleep with. In July, we found out that his body “forgets” how to breath at night. So he does not sleep through the night and really never has. His exhaustion caused him to be moody, fall, and have trouble functioning all day. It also caused Bri-guy and I to be up most of the night as well for as long as we can remember. But in the past month Carter is actually SLEEPING! Which means Bri-guy and I are getting use to sleeping again. I still get up in middle of night to check on him. (Habits are hard to change) But as my trust grows in the effectiveness of the machine, I feel I will learn to sleep again too.

Mags is on meds that have regulated her arthritis and allowed her to continue her love of acting without too much pain. She has a lead role in an upcoming play and is so beyond excited for this role.

With all these medical advances and the doctors and specialist we have supporting the Zoo, their quality of life is at an all time high. The kids may not always appreciate their efforts, but I know Bri-guy and I absolutely appreciate the doctors, nurses and therapists that are on our team and very grateful for what they do for our family. Thank you from the Keepers of the Zoo Crew.

12/10/2020

With four of the four kids having some form of Arthritis, this day is worth spreading awareness. Please support the Zoo and wear your blue tomorrow. This is not just your old persons disease .