Every week we meet with PT and OT, it seems Niko is doing something he hasn’t done before… whether it be using his arm just a little more, reaching just a little higher, straightening his legs just a little more… his subtle changes grow until they are just part of the normal.
Niko started grabbing his toy on the side of his bassinet, with the wrist we were strengthening. For his first few months, he kept it curled in, and straightened it out every once in a while… then he started using it more and it seemed to have become just as strong as his other wrist.
He has always been great at holding his hands together, at his chest, which shows great range of motion, for a baby who was born with fractures and a broken ulna that he barely moved.
AI Nemours Dupont Hospital in Delaware
We packed up all four kids and drove to Delaware. We finally got to meet Dr. Bober, who I spoke on the phone with when I was pregnant, and he made me feel like everything was going to be OK.
It was Niko’s first long car ride!
When we got to the check in desk to meet with our department, I noticed on the wall behind the desk there was a special name written on a tiny baseball key chain… we were in the right place!
We got xrays, spoke with Dr. Bober and genetics, PT, as well as Dr. Kruse, an orthopedic surgeon. He gave us a splint kit aka “a break box” and we even got our pictures taken for the hospital’s new OI brochure! Can you find us?
We learned Niko did in fact have a fracture on his right arm, which I suspected may be have happened the day after his second infusion. I was changing him, I heard it, he cried, and stopped using it for a little less than a day so I didn’t splint it… I wasn’t sure, and they heal so quickly, thankfully he started using it again shortly but it was in fact a fracture.
We also learned that he had some compression fractures. It was suggested keeping him between laying flat and an incline no more than 60 degrees, which we weren’t going anywhere near anyways.
I still had him in a car bed, and was only using a slight recline mat and his reflux chair.
We learned in these appointments that we were doing everything we could… we were being careful with him, holding him, loving on him, treating him as normal as possible to support cognitive development, early intervention and PT, vitamin D and Pamidronate treatments.
It felt very reassuring and validating to spend time with professionals who knew more about OI than our local docs, as well as more experience with babies who have OI.
We laughed, we (I) cried, and we felt a greater sense of relief, aside from the compression fractures. Seeing Niko’s xrays made me feel anxious all over again… I had seen his films from birth, but I hadn’t looked at films with a group of doctors since my ultrasound and it was scary. When you actually see what his bones look like, compared to what another baby’s bones look like that doesn’t have OI, it feel very scary.
But as Dr. Bober said, “It doesn’t change anything.” Care is still the same, we are treating the child and as of now, we are certainly doing everything we can to give Niko the best opportunity to live a full, enjoyable, healthy life.
When I got Dr. Bober’s report in the mail, it felt so wonderful to read all the things that were “normal” about Niko… I put it in quotes because what I have learned through all of this, is to question what is normal. Different feels more accurate. These thoughts aside, one of the things I wanted to get from our visit, was that Niko was healthy. Aside from his bones, was there anything we were missing, or anything else we needed to be doing for him specifically. What I got from our visit was that he was in fact clinically doing well and to keep doing what we were doing.
When I got back Dr. Bober’s report in the mail, one of my favorite things he wrote was: “grossly normocephalic”. So many big words used in the xrays report and medical language that I just didn’t know but could only be afraid of. This phrase got me nervous, although we didn’t discuss it, and so I looked it up and learned that it means his head appears normal.
Couldn’t we just for once say that?!
… sigh of relief… and joy… and assurance that were one our path and it was in fact going to be OK.
… I could relax…
… even if for just a little…
Niko’s first Christmas!
When I was pregnant, I would pray to just be at Christmas…
…could I just be there instead… I just want to jump ahead, not go through this… just be there… however it looks… I want Christmas spirit, magic and miracles. Please let’s just get to Christmas.
And it came!
… and I was still tired… but ready to enjoy the holidays as we had so much to celebrate.
- nikkicapeziowatsonParenting is really hard… not harder than other hard things… just pretty challenging and multifaceted and all kinds of emotional and mental attachments and beliefs… and outcome… and pressure… as much as I surrender, I still struggle with it… tonight was challenging… like many nights…my kids do it big… fight big… love bIg…. cry big… make and play big… move big… I have no answers, only a commitment to keep showing up… I’m attached to these humans and I’m doing my best… so excited #nikogian made it in his car seat for the first time… for his first Christmas… here’s to keep on going🌟🙌💕 #halloweenshirteveryday #trulypatootie#momoffour #myassignment#wereallinthistogether#theywillchangetheworldforthebetter#ipromise
In front of our fireplace at our new home! We weren’t moved in yet but soon! God willing… fingers crossed. Go Daddy, go!
Every Christmas Eve we celebrate at Aunt Di’s house and this was the first year Daddy didn’t come with us… he was in the 11th hour to get our new home ready for us by Christmas!
Niko did great for his first Christmas Eve. I, however, started to feel very tired, worn out and stressed so I tried resting at one point when Niko was napping.
By the time we got back home at the end of the night, I started to feel worse. It was about 9:30 pm and Sean called and said to pack up what I could and come on over to the new house because he made it in time for us to wake up at our new home on Christmas morning!
This was awesome, and stressful ….
Before I finally got into my van after stuff was packed up, I threw up in the bathroom… I knew I didn’t feel good, but I started to feel better after that.
… a little bit.
We got to our new home and our master bedroom wasn’t finished yet so Sean put our mattress and set up Niko’s bed in the main room. It was beautiful…. and perfect.
The rest of the night and day was a whirlwind. We got ready like crazy people because we were hosting Sean’s immediate and extended family the next day!
So we spent time cleaning and Sean finished building things… his parents and sister came over to help do things and decorate.
… We will certainly look back on this year and remember what a unique time it was.
Niko’s first Mama’s birthday and his first wedding
We celebrated Niko’s first New Year’s Eve and then our family got hit with a little bit of a bug.
Truly got a fever on New Year’s Day, and thankfully, Niko only caught a stuffy nose and cough in late January.
I, however, spent a few days flushing my system, with a stuffy and runny nose, along with a persistent cough, just in time for his third infusion!
It took everything in me to get it together for our mid-January overnight at the hospital.
We got the hospital around 12:30 and got to our room a little after 1. Niko got weighed and we were waiting for the IV team until about 3:30. Once they came, we saw they were familiar faces. Unfortunately, we had a failed scalp vein IV and a failed hand IV. Jonathan used the ultrasound machine and was successful with a vein near Niko’s ankle. We got enough blood for the calcium check and it came back normal.
Niko was all smiles after that!
Unfortunately, the meds didn’t come until around 7 or 7:30 and we didn’t start them until 8:50 pm! That’s crazytown!
I was texting the script on the syringe to my friend and we were a little confused about it. Turns out the script wasn’t written or filled to follow the amount of fluid described in the protocol we were following. This felt like a fiasco… at 10 pm at night nonetheless.
The meds ran until almost 1 pm and then a 15 min. flush.
I got a little bit of sleep and woke up to the endo fellow coming to check on Niko. I told her the script was wrong and I was confused about the dosing. It didn’t look right to me.
Turns out the weight she had submitted the day before we got there, was under what his current weight was.
Her explanation was that she wanted to have the meds ready for us when we got there, and it took the pharmacy four hours to put it together. This became further curious.
She said she used his weight from two months ago.
Now what sense does that make?!
Since I work with a pediatrician in the hospital, I was able to get further information and assurance that we would use the correct weight for the next day’s infusion, and the correct fluid amount, which was almost 5x under what it was supposed to be.
Our pediatrician is off the charts wonderful and she is a shining star amidst the chaos. We are lucky to have her, and so is the hospital.
Was it harmful to have such little fluid? Not that we could tell, Niko did great!
It was just wrong.
… and the point of following a protocol is so everyone does the same thing everytime, we have a way to track where we are and if we need to alter the meds based on how he respond to it.
The second day’s dose was perfect.
Unfortunately, Niko’s IV didn’t hold up and we had to call the IV team back in. Another failed scalp vein IV and another failed hand vein, left us with a successful other hand IV. This was a pretty rough experience for me. The doc on the floor was young and sweet and helping me distract Niko with his toys, and sweeties (which mortify me but I get desperate), but it was a terrible, awful time.
After his dose, he was finished and he had done well! He is comfortable the whole time and I am so happy to leave and enjoy being home.
The sunrise the morning after we got home and a much needed bath and relaxation.
After every infusion now, he shows how much stronger he is getting! Better head control! And he shows of his Doterra On Guard blend as we continue to ward off post-hospital and sibling germs.
While we were in the hospital, his big brother stayed home from school because he had a fever. He bounces back quickly, but we were thankful Niko’s cold only lasted a week. It was a long week but we made it through and we are all looking forward to nice weather to come!
Here’s to being 6 months old!