Christmas Hay Ride
Afton had a great time over the holidays. She was able to spend a lot of time with her cousins, aunts, uncles, and grandparents. Coming out of the holidays she did get a stomach sickness, which isn’t really surprising. Her stomach bug was treated with antibiotics and she is just starting to return back to normal now. Unfortunately, she has suffered from a bad diaper rash for almost 5 weeks. This makes it hard to sit or do any type of therapy. It felt as though we took a step backwards during that time.
She is making up for it this week though! She started school and absolutely loves it. She’s making new friends and learning so much just by seeing kids her age interact. If you ask her about school she can’t help but squeal with excitement.
Additionally, this week she decided to put us in our place and tell us that she wants to go to the bathroom like a big girl. She uses her sign language (pinches her nose) to tell us that she needs to go to the bathroom. As soon as she sits on the toilet she has no problem going. We didn’t even know that she understood this concept. I guess it just shows how much is in her head that we haven’t figured out how to help her communicate.
Everything else is going well. We are focusing on getting ready for the baby which is just a couple months away. Afton is really excited about having a baby in the house. Every time a baby comes up she signs Mama (points to her mouth) and touches Mom’s stomach. That’s all the news for now. Let’s hope that year 3 is a big year for Afton to develop and learn and not have to deal with medical issues.
As usual, we need to start this blog post with an apology for not keeping things updated. Going into summer, Afton was on the transplant list at a pretty high priority. A couple of her doctors were having a debate about her future care. One had the viewpoint that she should have the transplant now based on all the observations and what she had been through this spring. The other thought that this liver may be able to last for years. They both agree on two things: 1) she will need a second transplant at some point and 2) the bigger and older she is for this transplant the better. We respect both of the doctors very much, so we had no initial opinion.
If you all recall or read back a couple of blog updates, Afton had a tube coming out of her tummy that was helping direct her bile into her intestine. The tube had been ballooned a number of times which stretches her bile ducts. Also, the tube alone being inside of her causes a permanent stretching that could be good to open up the passage way. So, the compromise was to remove the tube and see if her body can now naturally let the bile flow. In other words, did the stretching help fix the initial problem. If it worked then, they said they would take her off the transplant list and see how long the liver lasts. This could be 1 year or 12 years. No one knows for sure. If the liver shows signs of having the same issue, then they would re-transplant her as soon as possible.
We were thrilled but nervous when everything worked out great. Now 3-4 months later, things are still looking good. It’s pretty amazing that this liver has lasted for a year and half already despite some of the initial issues. Her liver labs are pretty much normal. She has had a cold for quite a while (like everyone else right now) so in combination with a change in her meds this caused her to have a slight spike in her labs, but thankfully they are returning to normal.
Afton turns 3 this November and if all of you remember she experienced a lot of brain damage in her first few days of life. Her development has always been an unknown to us and now that she is getting older, we are starting to learn more. We have to be careful to not assume that we know her capabilities because she is developing at her own pace, but the older she gets the more we understand her. In many ways she is very disabled. She doesn’t eat on her own and is basically 100% tube fed. She does not crawl, walk, talk, or even sit very well. She likes to pretend and suck on things but the act of eating is very overwhelming for her. She goes to a feeding clinic and food is more of a social thing than a need for her. We continue to work hard at teaching her new things and do a lot of physical therapy but she has a very long ways to go to really understand what her body can do. This is very difficult for us at times because she is very dependant. She is hard to carry and gets frustrated with not being able to burn energy like a normal kid does.
We have learned over the last year or so that she is very smart and social. Her eyes communicate so much. She understands a lot of what we say, if not all of what we say. She loves story books and movies. Sometimes we are amazed at how much she is following the story. She laughs hard at the funny parts and is very intent during other parts. She also has recently started to show more interest in other kids. She plays with her cousins and has made a few friends at the park. We are starting to think about when the right time is to put her in school to get more interaction which may also be motivating for her. We really believe that she wants to do things like normal kids but just cannot figure out how to tell her brain to do those physical things. It doesn’t come naturally so she really needs to think about it.
As she gets older it is more apparent to others that she is disabled which is hard on us but also will be even harder if we continue to keep her sheltered. So, we are working at trying to do more with family and friends so others can get to know her too. It takes some time but she is a part of our family and is so amazing and we want others to experience that. It is a lot of work for us to take her places with her feeding schedule, meds, and physical needs so we are working on balancing that. This weekend if all goes well she gets to see so many of her relatives on the Lundorff side including her Great Grandma (GG) who believes that Afton knows she is “connected to her” because she always reaches out to touch her and hold her hand. GG doesn’t need to know that we struggle with Afton doing that to everyone, even strangers at Target. In addition to wanting to touch strangers she loves to play cute and smile at strangers behind us just to get extra attention. She knows what cute is and if you ask her if she is being cute, you usually get something cute in return.
In addition to all of this we have been pushing our family to move on. This may sound harsh but we really feel like we have just stopped everything to deal with her medical issues but also in anticipation of her development. We know that to get to a happier place we need to accept that this is our life and force ourselves to embrace it. So, our other big news is that Afton is going to have a little sister due April 6th. We were nervous about having another child for obvious reasons but not only do we feel that we need to experience raising a typical child, we also think Afton will benefit from having a sibling. We have heard from other families who have children with disabilities that having another child was the best thing for all of them. We believe that could be true for us as well. We have went through the appropriate genetic testing and are very pleased to say that everything points to a healthy baby. We are trying to be positive but both of us are scared and probably will be until sometime after April. We are truly blessed and happy with our family, we just need some extra adult time (a.k.a sleep) and are fortunate enough to have wonderful parents and nannies who help make this happen.
Happy Halloween to all of you. Afton will be a cupcake this year and we’ll be sure to post a picture.
Afton has recovered from her surgery well and overall has had a good week. She is in a great mood and just charming her doctors, therapists, and of course her nanny. Things are pretty low key around here since we have had a few illnesses around the house. So far Afton hasn’t gotten sick but we aren’t in the clear yet.
Afton had to see the doctor today because her stomach where the surgical tube is located is pretty infected. He cleaned it well and decided to put her on an antibiotic. Turns out that Afton’s grandma has strep throat and Afton was with her all day Saturday. So, they have now extended her antibiotics to take care of any potential strep throat as well. Let’s just hope that Afton continues to feel good through it all.
We also learned today that UNOS accepted the proposal from her liver doctor to have a higher score on the transplant list. Her new score could potentially get her another liver. Before this her score was so low that there wasn’t really any potential. So, we are mentally preparing for the call and waiting once again.
All of this comes with mixed feelings. On one hand we just want to leave Afton alone and let her enjoy life since she is feeling so good right now. On the other hand, maybe it is a blessing that she is so happy and healthy while she waits for a liver. We have seen first hand that is not the norm for most kids experiencing liver failure.
In the end, whatever is going to happen is really out of our control and we’re just taking things as they come.
Afton finally was able to receive the proper, uninhibited surgical procedure that set off this flurry of hospital stays. In the face of all of the negative hangups that have occurred over the last couple weeks, something finally went right: Afton’s procedure was a success.
The doctors had set the expectation that there was a high probability of the procedure not being a success, but it appears we were due a small, early victory in the impending battle Afton has to face.
The result of the successful procedure is that Afton no longer needs to drain her bile from her liver externally (into a bag). They were able to route a channel into her intestine from the billiary ducts, so Afton’s liver now produces bile that flows through/into the intestine as the body intends. The implications of this: it should clear up several nutritional issues we were having with Afton (your body needs the bile produced by your liver to process nutritional fats and fat soluble vitamins and minerals in your small intestine).
This doesn’t change the big picture. Afton is still listed on the transplant list, and they are petitioning for a better score to elevate her status on the list. But for now, we are hoping that this latest break will help her to remain healthy, and continue to grow over the next weeks while we wait.
Once again Afton is home, and very happy to be so.
Afton was transferred out of the PICU today but is still in the hospital. She is going to have her originally planned surgery tomorrow. They will give her IV fluids and monitor her closely to hopefully avoid any serious issues like during Wed’s procedure.
We will update soon with the results.
Afton went in for her surgery early this morning. Part way into the procedure her heart started to beat abnormally. They immediately stopped the procedure and worked on getting her stable. They soon found that once again her potassium was dangerously high. So, the procedure was ended and she was transferred to the PICU for monitoring.
She had a consult with a renal doctor (kidney) today to try to help us troubleshoot why her potassium continues to get dangerously high. Tonight she will be in the PICU for monitoring while they try some different approaches to controlling her potassium, keeping her hydrated, and ensuring the appropriate amount of calories. Her kidney function continues to be stable.
Today Afton was officially activated on the transplant waiting list. Her status is really low but they have sent a proposal to get her some points which would increase her score.
Hopefully she will be home soon and can wait for her new liver in the comfort of her own home. Overall, she is still pretty happy and being a good sport.
