Ears Ears Ears

We took a trip to California to visit family and meet up with some I-Cell babies. (Post to come)

While the visit Brielle struggled with severe constipation, infection in both ears and to top it off caught a cold. 

According to my last post I was feeling very optimistic about her health but just like that things can go down hill.

Today Brielle had a visit with her Otolaryngology/Neurotology doctor. Ears were suctioned, had a strep swab & pressure test. 

No strep, just fighting a bug. Swollen throat, reason for the chocking and gagging. She's very narrow so definitely compromising her swallowing. 

I had my little helper with me today; Ashley my 11yr old. I had to make her step out of the room she kept covering her eyes at the sight of the procedure, she can't stand seeing her sissy in any type of discomfort. 

Good news her fever finally broke last night. 

Bad news, her ear tubes fell out of place. I need to make a decision to replace the tubes or continue antibiotic drops to see how she does. So far it's been recurring ear infections/ drainage. If we go through with the replacement of the tubes; she will need sedation. She wouldn't need to be intubated, just mask; down for 6-7 minutes.  

Decisions... decisions.

I'm definitely leaning towards getting the tubes replaced. Will need to make sure she is completely out of the woods with this sickness and before flu season starts. 

I have faith God will line everything up for us to make the best decision and help her get over this bug ASAP. 

Thank you for the continued prayers!! 

Something I hear a lot ... Slow & Steady

It's been since Oct. 2014, since Bri was been this sick. Oct. 2014 she was in the hospital with pneumonia for a few days. Very scary, first experience.

She's been sick in between then and now. I have learned many things along the way and my care for her has changed, a lot. I try to fuel her with good supplements to build her immunity. Even when she does get sick, she's been able to fight it on her own, just doing homeopathic remedies. Even fought off the flu a month ago, she went through the aches and chills got rid of it in 3 days. I've been working very hard, helping her stay strong.

This time around I tried it all but this sickness got the best of her, she was fighting something her little body was not able to handle. After a couple days of being able to control the fever with baths, home remedies. I finally started treating the fever when I couldn't keep it down naturally, Tylenol helped drop the fever from 103-104. Finally took her to the Dr. and we started treating her as she had pneumonia. Really we didn't do X-rays, or hear fluid in the lungs; just due to the symptoms. I still waited til that night to hold off on antibiotics, but my gut-fear got the best of me and started her on them Monday night. Definitely didn't want to risk the chance. 

Last night, she finally asked for food, had some bone broth, and her teta (bottle). She's now sitting unattended and talking to us more. Took a toll on her little body. I'm just happy we finally got some fluids in her. 

Still dependent on O2. Which is expected with all her respiratory issues.

Luckily I had our day nurse yesterday and got somethings done around the house and my night nurse was able to work longer and got caught up on my ZzZz's. I'm hopeful for a better day, she's such a strong baby. 

I've had many people tell me she's beating the odds when it comes to what is expected from I-CELL children. She is very mobile, verbal, etc. To be honest, I feel like there's a large spectrum within I-CELL kids. It may have to do with their mutation, the progression etc. who knows? Just because Bri is hitting milestones we never imagined she'd achieve... doesn't guarantee us anything.

I simple cold can defeat her. 

Time is not promised. We know the "life expectancy" those numbers don't lie. The majority of I-CELL kids don't make it pass their 5th birthday. Yes, there are a few that have, but overall, it is rare. I've actually taken count myself, from all the kiddos I know of that have passed. Some don't even make it past their 2nd. 

I've tried my best to keep these situations as peaceful as possible at home. (I know these situations can go from great to zero in no time.) I don't want any panic or stress. I know it's a very hard situation on us all. It takes a huge toll on my girls to see their sister sick, or hear the machines going off. They have many questions. This can be very traumatizing for them, I am doing my best to be honest with them, peaceful and hopeful. 

I know Bri will get through this one. It is not her time, not now. But, I can see how this disease is damaging her, her airways are narrowing, her respiratory issues are getting worse. It doesn't matter how well I care for her, how strong she is, we won't be able to defeat I-CELL. Not in her life time. 

Another year, another blessing

This year I'm hoping to live life a little different. Slower, at my own pace, and in control. It seemed impossible before, everything that comes with having a child with a chronic illness has taken a toll on our "normal life". Its emotionally, physically and mentally draining.  Many days I felt like a zombie, drinking coffee all day to stay awake, a glass of wine to help me sleep. It was impossible to ever get caught up with all my duties. 

Towards the end of last year, I cancelled all of Brielle's appointments, not only was flu season creeping up, but I was just done, done wasting time. I felt guilty for doing it, after evaluating every specialist, and reasons why we go to them; I realized she didn't need to see them anymore or as often. It was the same ol conversations; in conclusion they can't do anything. There's no treatment, there's no cure,  there's nothing anyone can do for Bri. I was wasting our time and their time. The specialists I decided to continue with are; pulmonary, cardiology, ENT, and her geneticist (only because he has dealt with other I-cell children before and is a great advocate) every six months or so. Her pediatrician we don't see very often, he is very good about avoiding Brielle coming into the office unless absolutely necessary, we usually just discuss care over the phone. I feel so much better, a huge load off my shoulders. It's made a big impact in our life believe it or not, I'm able to enjoy her more. Now we have her therapists come once a week; OT & PT, they are great and these therapies DO help her a lot.

Look how big my girls are getting!!! Lots of joy & drama with these 3 👧🏻👧🏻👧🏻