Summer?

It feels so surreal to type that in some ways, but summer is finally here. It seems to be so fleeting though. I think back to where we were three years ago, just under a month from losing Millie, and I realize how quickly that time went by. April to July as I have said are difficult for me. Now three years later, I can still say it's difficult. I try so much to focus on the beautiful memories we have of Amelia, but her absence is still felt. All the time. I think of how crazy my house is and despite all of that, I still wish with all my heart that I had all three of my children.

I realize I am so incredibly blessed to be able to hold the two that are still here. But having them here does not make me miss their older sister any less. My house would be 100 times more crazy than it is now and I would still do it. There are a lot of memories that are flooding back now that the day of her angelversary is drawing near. I look back and I still realize that the time she was alive was difficult, but it was nothing compared to the time we have lived without her. That has been the ultimate challenge, one that I am still trying to get through to this day. I realize that won't stop. It will be different, but it won't go away. I look back on her last days and remember the peace I felt. We were living for the moment, literally. Every moment we had with her was precious. We knew her time would be short. No one would probably have guessed just how short that time really was.

Having Nora also brings a lot of other emotions. We are so blessed to have her. She has a lot of Millie's sweetness, wisdom and charisma but she is also one of a kind. I am seeing all of the things we've been able to do for her and I long to have been able to do that with her big sister. Amelia was very sick, and we just didn't have the time or the energy to learn what we have with Nora. I gathered more information before Nora was born because we know the diagnosis already. By the time Amelia was diagnosed, she was just over a month away from dying. Spinraza was showing a lot of promise, but at the time it was still in the clinical trial phase and in order to participate we would have had to temporarily relocate. We had no way of knowing that Spinraza would be FDA approved just months after her death. I do remember talking about it, and Justin and I deciding that we could try but we were not sure we wanted to put Millie through anything more. Now I wish we had known then what we know now. Maybe we could have fought harder to save her. But those thoughts don't do me much good. That doesn't mean I am able to make them go away. For the most part I am at peace with all of it, but there are days that I am not. I don't really know how to explain it in a way that will make sense.

Lydia continues to be a joy and a challenge. She knows that her sister requires extra care and attention. However, we are not able to even try to ignore her. Not that we would want to, but what I am trying to say is that Lydia is very loud and is very good at communicating what she wants. Nora is able to do that, but it takes more effort to listen to her and figure things out. They are both amazing little people who I love with all of my heart, but it is challenging some days to just get through until their dad gets home. I've been burned out for a long time, and Justin has too. It is so hard. We can't just say that we don't want to do this. Our children need us and we want so much to do everything we can for them. All of it has its price.

Yesterday the whole family was up very early. We have been up earlier for appointments, but dang it was still very early. Last week we received word that Nora's wheelchair arrived! It was so wonderful to see her in her chair for the first time. She doesn't look so much like a baby anymore in it! She looks like a little person. I guess that makes sense, because next Friday she will be 10 months old! Soon I will be mama to a one year old and a two year old.

Two weeks ago, Nora was discharged from the hospital. She had been there a week. We had been struggling with keeping her oxygen saturations at a stable level at night. I had been battling that for the better part of a week. It was incredibly frustrating, because she was taken to our local ER four times before we finally were transferred. At first they thought she would just be there for observation, but it turned out it was a very good thing she was there! Sunday June 2 she started to run a fever. By Monday evening she was up to 104.8. It was a very scary time. They did a trach culture and blood cultures. Both came back positive for a bacteria called Serratia. She was started on a very potent antibiotic via IV. The goal was to get two negative blood cultures in a row so that they could place a PICC line (more permanent IV) and then discharge home. I am so glad we finally transferred her. Odds are if she had not already been there she could have become a lot sicker. The PICC line was a challenge but we got through it. Yesterday after she was fitted for her wheelchair she went to the Infectious Disease doctor for follow up and her PICC line was removed. I am praying that this will be the last we see of the Pediatric ICU for a while. We need some time to have fun as a family. I am so glad we received Nora's wheelchair during the beginning of summer so we can go places with more ease than before.

I figured I would try to get a little bit of an update posted. Next month is busy. Nora has appointments in Sioux Falls, as does Justin and I will be undergoing a diagnostic procedure then hopefully will follow up with my GI doctor to get a better treatment plan figured out. Then it's off to Illinois to be with family and celebrate the marriage of one of Justin's childhood friends. August is also proving to be busy, as we have birthdays (Nora's being one of the biggest events!) and the Energy for Life Walkathon. We are looking forward to making some good memories as a family.

Hopefully I will update more sometime soon. Thanks for catching up with us!