It's hard to believe it's July and we have entered week eight of our time at Dell Children's. For someone who hates hospitals and intentionally avoided them when having both babies, it is comical that we have spent the last eight weeks of our lives living in one. 

As I write this, I am exhausted. It is the day after my night at the hospital, and those days always seem to wear on me. This past weekend was long. 

Andrew turns one in 24 days. It's hard to believe he has spent the last couple of months of the first year of his life being surrounded by nurses and doctors and learning how to walk in a hospital. I think often about how and if this time will shape him. I wonder the same for Addison. Many tell me she won't remember a lot of this, but I know better. Her body will remember what she doesn't, and I wonder about how that will change her too. 

My last update, I shared that Addison would be receiving a VP shunt. She had her surgery Friday morning. I showed up bright and early at the hospital and got to lay with her on the bed, as they wheeled her off to surgery. We opted not to give her the relaxing meds before anesthesia, because I HATE the feeling of that medicine, and let her watch Miss Rachel as they took her into the OR. We were later told she would have done well with some of the relaxing medicine. She came to awareness of being in the OR even in spite of watching the show and panicked, so the anesthesiologist sedated her sooner. Kyle and I walked to Kerbey Lane for breakfast to take our. minds off the surgery. We were told it was a ninety minute surgery and often times quicker. We were also told it was a standard procedure. At two hours, I started panicking wondering where she was. At two and a half hours, I was spinning in worst case scenarios and insisted on an update from the OR. At that point, I saw her being wheeled away by the anesthesiologist. I asked if she was okay, and they said yes they were taking her to a CT scan. No one had told me they were doing a CT scan, so I asked if that was normal. They insisted she was fine. When the surgeon came in, she was frazzled that the nurses station had called into the OR asking for a status update because "mom was getting concerned". I told her she had told us it was a ninety minute procedure and usually even quicker, and she joked that she meant in her time. She didn't understand that I was replaying the day of the accident and felt the fear of losing my daughter rushing back during that time. 

Before the surgery, I had told someone that I was concerned about a Strata valve for her shunt. I had no idea there were different brands of valves, but of course there are! Apparently that information was passed along to the surgeon, but that was the brand that was chosen anyways. My understanding is that every surgeon has their preferred brand, and Strata's is this surgeons. My reservations were that this brand often resets - meaning the pressure settings change randomly. and people have had to come to the hopsital to get the settings reset, and many have even gotten a valve replacement for a different brand to avoid the random resets. We were told that the valve is a magnet, and they change the valve with a magnetic advice at the hospital, and it is a very quick reset. I asked if there was a device that I could purchase to check and reset myself at home, and the response was "no, because mothers like you would be panicking every time something was off." What she doesn't understand is that with a nonverbal child and symptons of valve resetting being very similar to a common sickness, I will be overthinking every symptom without the ability to check the pressure on my own. I proceeded to ask more questions about the shunt, the materials used, etc. since she had chosen the one I was concerned about, in spite of my concerns, and the response was "you know more than anyone other parent about shunts". Sounds like mockery to me? Needless to say, a conversation needs to be had, and there was so much insensitivity after the surgery, but the surgery itself was a success. 

After surgery, we went to post op before being transferred to the neuro unit of the hospital. We have officially roomed in all of the floors of the hopsital. A milestone? While waiting in post op, we noted that her NG tube (the tube in her nose that she gets her meds + nutrition from) was at the wrong placement. It needed to be fixed - it comes out often from when she cries, etc and we have to put the tube deeper every so often. We asked that they fix it while she was under anesthesia, and they did, but incorrectly. The tube has measurements on it, and we had asked for them to put it at a 37. When it came out it was at 42. We were very upset, because the tube is such a pain point for Addison. I've had a tube in myself, at 15, and it is so unpleasant to put in and take out. They apologized for "our frustration" without owning the mistake until I asked for some ownership. The nurse had noticed that Addison was uncomfortable and was immediately proceeding to give her fentanyl. Thankfully I asked what type of pain medication she was planning to give. I declined, and then she offered oxy, which I also declined, and then we finally discussed Tylenol. It turns out Addison was just upset that the blood pressure cuff was still on and her NG tube was coiled in her throat because they put too much down her nose. They blamed in our crying for it being coiled in her throat, but we have had this thing in for weeks and have replaced it three times already, and she has cried PLENTY, and we have never had this happen. They ended up taking it out, and she got to have the tube out for a few hours, which was great, but we had to put it back in. There is nothing worse than holding your child while they are screaming putting the tube back in. It's been a horrific experience every time. 

This weekend was a recovery weekend. We were back in our room for inpatient rehab by Saturday afternoon, thankfully, but were still monitored by the neuro team until Sunday afternoon. We were set back in the bowel department and dealt with constipation again, but thankfully are already back on track. We were told that patients who receive shunts who can speak complain of pain and stiffness along the neck down to the chest where the shunt line is, and it's been very evident that Addison has a lot of pain and discomfort in that area. We've been treating with Tylenol consistently and muscle relaxers the first couple of days post op, but every little bump we pushed her over while walking around the hospital in her wheelchair resulted in screams of pain. Moving her and even changing her became huge moments of resistance from her, and her body is still working to settle itself. It's very hard to see her body in such a protective state. Her favored position is her laying on her back with her legs out in a frog position and her elbows bent with her arms face up and her fists clenched. A lot of PT this week has been sitting upright and stretching her neck out, so she can start to find a neutral head position again without pain and discomfort. She has three incision points - one on the top right of her skull, one behind her right ear (this is where the valve is), and one in her belly. The line is a plastic tube lined with barium, so that when she receives scans, they can see the tube and runs from her skull down to her belly where the fluid will drain. There is a ton of extra tubing in her abdomen to account for as she grows - enough to grow with her to 5'8'' or 5'10". The part of her skull they cut out was replaced with a dissolvable plate - insane. They used to use titanium, but now have technology for dissolvable plates. Here is a link with a quick explanation of shunts. https://www.pacificneuroscienceinstitute.org/hydrocephalus/treatment/shunt-procedures/ventriculoperitoneal-shunt/

I remain in a state of acceptance now that we are post op but definite unease after reading many accounts of shunts resetting themselves and living with the concern of whether or not it has reset and how that is impacting Addison and the thought of potential replacement surgery one day. I've received many positive accounts of shunts, which I also appreciate but that lingering "what if" is never an easy thing to live with. 

It wasn't until Sunday evening that I felt at ease that the shunt surgery made a difference. Since the date of the accident, I have always felt like Addison was "there". I have been able to look into her eyes, and even though she hasn't been able to communicate in the way she used to, I could see that my girl was still very much present and have worked to read her in the same way I did prior to the accident. This past weekend was the first time I felt unable to connect with her in that way, and it was terrifying. Sunday night was my night at home, and Andrew and I Facetimed Kyle and Addison like we do every night, and her normal giggly self seemed to reappear on that call. Then Monday, she had a great day with SO MUCH VOCALIZATION. Any time she would cry, she would realize her mouth would open and she went from humming to making noises with her mouth open. She even said MA! She was so proud of herself, and every opportunity she got, she would practice making her new sounds. During speech therapy, her therapist even commented that she was noticing more inflection in her hums and sounds than last week. 

We get a lot more out of Addison than her therapists do, so we've started to encourage her to show off to her therapists, so that we can go home soon! She always giggles, and it seems to be a motivating factor. Her PT has been VERY pleased with her progress since the shunt procedure. She has been able to sit up with very little support from the therapist - just some continual feedback or adjusting her to help her body find neutral, but she is doing the work to hold herself up in a seated position now. Her arm movements are getting so much better, as is her grip. 

Yesterday, she was working to pull suction toys off of a mirror and was pulling them well. She got a bath yesterday afternoon for the first time (we've been doing weekly showers). It's always so nice to see her bathed and to get an opportunity to brush her hair. It gets crazy fast laying in a hospital bed for so long. They introduced chicken noodle soup to her yesterday during speech. I was beyond skeptical. My approach is keep throwing ice cream, popsicles and her favorite popsicles in front of her, because that's what would be motivating, in my eyes, but I continue to work to trust their process, and she was actually interested in the soup. She has been allowing popsicles and ice cream to her mouth and her mouth movements have gotten so much better. She actually moves her lips to take the contents off of her lips. It's so encouraging to see. We are still working on her opening her mouth on her own, rather than an after effect of crying. We continue to give her sausage, biscuit and bacon kisses in the morning, and any other food we're eating kisses, and she always smiles and giggles. While her mouth movements have improved, and we are encouraged, the discussion of the possibility of a G tube came up this week. I broke down in tears. I was so hopeful that we would be eating and wouldn't even have to consider it a possibility, but it is now a possibility, which means another surgery. They don't like to use NG tubes for a long time, so if they believe swallowing enough for nutrition sake is a long ways away, we will likely proceed with a G tube in her stomach. We were told that this doesn't change the work they do with speech and sometimes it can help kids progress, and there is a part of me that would love to get that tube out of her nose, because while she has grown used to it, I know she doesn't like it, and I wonder if her swallowing would improve without it. I really just don't like our choice points in any of this, and that's a hard place to be. 

There is a Catholic church that we can see from our game room window. It's walking distance from our home, and there is a group that dances and plays drums every Monday evening. We investigated them last May and then Addison and I started going every Monday. They gave her her own shaker, and we would do a few dances before bed time and went to their year end performance in November celebrating something to do with Mary that I am blanking on now. Anyways, I took Andrew a few Mondays ago and let them all know what had happened. And now, whoever is at home on Monday nights takes Andrew and Facetimes Addison. We brought her shaker to the hospital, and this past week was so much fun watching my mom, Kyle and Andrew dance to the drums while we shook our shaker. 

We anticipate getting an updated discharge date early next week. They want to reassess her for a week after the surgery, and it's a holiday weekend this weekend, which means no therapy for us - truly the worst. We are mentally preparing to be at Dell longer, but this has not been confirmed. We've gotten to celebrate a few other kiddos being discharged. All of the inpatient staff lines the hallway and plays music and blows bubbles and cheers for the kids when they leave. One of the most recent patients chose the song "Dog Days are Over" by Florence and the Machine. It's always been a song, I've loved. I broke down crying bittersweet tears - sweet that they were getting to go home, bitter that that child still had a long road to recovery. We're already starting to think about what our discharge song will be, but I'm considering stealing that one. I made a paper chain for Addison, and we take off a paper link every day, and I tell her we're one day closer to going home, and she giggles and smiles. 

We had a good friend of mine and her kids visit the hospital on Sunday. Her daughter asks about Addison daily, despite being only 2 years old, and only having met Addison once two summers ago. When her mom has showed her pictures of Addison throughout this journey, she has told her mom what Addison is feeling based on what she is seeing, and she has been very insistent. On Friday, after Addison's procedure, she told her mom that Addison was fixed, even though she didn't know that Addison had had a procedure. I am holding on hope to that being the case. 

Just in the last day or two, Addison has started to be more interractive with and curious by her nurses. She even has started to greet a couple of them with a smile and a hum noise. This is very encouraging to me, and I am excited to see her social self come back online. Since the surgery, she has become very exploratory with her hands - touching her face, playing with her fingers, and her belly. We believe with the pressure relief, she has come back "online" even more so, hence the sensitivity to movement, hand exploration and becoming more social. There are still many moments where her eyes will do things that is unsettling to me, or sometimes when we're interracting with her, she will sort of look off, and we will ask her where she went. Sometimes she does a squnity thing that looks like either discomfort or like she is exerting a lot of effort. These things are uncomfortable to watch, just because I don't really know what is happening for her when she does them. I talk with her about what I am seeing when she does them and ask her if she's hurting in any way, but so far I haven't gotten any solidification on what is going on her for her. We continue to discuss with neuro, and so far they are not concerned. 

When they took her MRI last week, they also took an MRV to check out her blood clot. It hasn't changed since her last MRI, so we remain on blood thinners for the forseeable future. I was told that there is no way to know if the clot will dissolve. The way it was described to me is that if you're driving on I-35 and there is bad traffic, you'll find another way to get to where you're going. That is what happens when you have a blood clot in your brain. Things will find another route to flow. We were told we would rescan again either at 3 months or in 3 months - I can't remember which.

I think that's all the updates for now. I started this post before bed and woke up at 1:30 and got out of bed to finish it. It's been lingering on my mind and always challenging to post detailed updates the more days that pass. Addison's cousins are all coming to see her tomorrow, and she is VERY excited about this. Family and primarly Andrew continue to be the best medicine for her recovery. I was rewatching the video of her meeting him for the first time, and their bond is truly other worldly. Speaking of which, that reminds me that in PT she was holding a baby doll and giving it a small little medicine cup as a drink, and she was holding it on her own and even brought it up to her own mouth on her own. She continues to be nurturing of baby dolls, even now.

We continue to be hopeful, but the long term aspect of this has really set in. 

Please continue to pray for Addison. Pray that her body would relax. We tell her that she is safe, but that we need to remind and teach her body that IT is safe. I tell her that she can tell her body that too. Pray that her whole system would sense ease and safety. Pray for her mouth - that she would remember she can open it intentionally and pray for a myriad of sounds and words to come from it! Pray for her strength - that the strength she is building sitting up would start to translate to walking. Pray for her brain - that it would find its new norm and be at peace so it can recalibrate and rewire. Pray that the clot would dissolve. Pray for her eyes and that they would rest and not strain. Pray for our continued guidance in how best to support her and care for her. Pray for all of the doctors and nurses and therapists working with her and that they would be guided in how best to motivate her and help her recover. Pray for our systems as we continue on this journey. Pray for us as we even start to consider the transition to home. It's exciting and simultaneously overwhelming to even think about right now. Pray that my girl would get to ride her scooter again.