Paisley's Story

I'm not quite sure where to begin but I guess I'll just start from the very beginning. Paisley was born on January 26th, 2020. She was born full term and healthy, 5lbs 12oz. They placed her on my chest and I knew what unconditional love was in that very moment. I was overwhelmed and felt like a piece of me was missing and that I just needed her my whole life. We had a short stay and got to bring our sweet girl home. The snuggles, the joy, the love in our home, it was so surreal. When Paisley was 5 weeks old she had a cough and I took her in to get it checked out, everything sounded good I was reassured and to just bring her home and monitor it. A couple days later I felt as if it had gotten worse and took her back in, she tested positive for RSV. They sent us immediately to the hospital as her oxygen levels were not where they wanted them to be. I cried the whole entire way, just praying. We got there and they hooked her up so her oxygen could be monitored and immediately did some suncitoning to help clear the mucus. They kept us overnight. The alarm was constantly going off anytime her oxygen went under 90 and we were just switching positions making sure she always stayed elevated. I dont think Adam slept at all that night. The next morning they came in and it seemed like she was improving. I still was so scared and so on edge, I just wanted to be at the hospital in case anything happened. They told us we needed to go home because we would be safer at home with her than in the hospital because they just got their first coronavirus case. I remember being so scared, so confused. What is coronavirus? They told us to monitor her and she most likely had her worst night this past night so to watch her breathing and if we felt like we needed to we could bring her back in, otherwise try to stay home. Well they were right, we went home and Paisley began to improve over the course of the next couple days.

A little over a week goes by and we go into a nationwide shutdown for COVID. I have never really been a super paranoid person over sicknesses but having a one and a half month old baby made me very frightened considering we were just in the hopistal for RSV. I was one of those people that watched the news every day. I had text alerts on my phone for COVID cases. I was a ball of fear and anxiety. I vividly remember crying to Adam how I couldn't live without Paisley and I had to make sure she was safe. We literally did not go anywhere. We kept her at home and even when we went on walks we wore masks and I had her covered. This was such a stressful time. I had to eventually make a conscious decision to stop watching the news. It literally was just instilling fear in me everyday. Adam and I tried to just enjoy our sweet girl. I would get so excited to watch her hit so many different milestones. Smiling, rolling over, babbling, crawling, clapping, walking, saying dada and mama, playing peek a boo, dancing, playing with me, eating so many different foods, it was such an honor to see. 

Paisley was a little under one when she got croup for the first time. Her cough was so bad. I can remember not even knowing what to do and just being so scared she couldn't breathe. I took her in, they told me she had croup and  they gave her a steriod. They told me it would help her, which it did. Shortly after her first incident with croup we went in for her 12 month well baby visit. She was doing great at this point. She was hitting all her milestones. Saying 3-5 words and just such a happy baby. We took her home overjoyed with our sweet girl. About a week after her visit she developed a very high fever. I was scared and was just trying to control her temperature alternating tylenol and motrin. The next day she woke up with a full body rash, it spread to her face, her eyes were puffy and she was just so out of it. I remember that night while changing her diaper she just went lethargic. That was my scariest moment thus far. I remember immediately crying, thank God my mom was there with me. I stripped her and put her in the bath and she then seemed okay. I called the drs. again the very next day and they told me it was most likely roseola and it would have to run its course. 

Paisley proceeded to get croup three more times before she turned two. I'd take her in they would give her a steriod and she would get better. I was very worried and didn't understand why she kept getting it. I was told some kids were just more prone to it and she would eventually outgrow it. So, I just put my mind at ease and just let it be. 

Around 15 months, I first noticed Paisley's development kind of slowing down and she didn't always seem as responsive as she once was. I brought it up at a drs. apt and I was told she was completely fine but she could refer me to an audiologist if I was super worried. I agreed just so I could ease my mind. We went and Paisley passed her hearing test. The audiologist was nice and confident. She watched our sweet girl play with the toys and build blocks, laugh and smile. She told me that she's been doing this for 30 years and I was just an overly worried first time mom with absolutely nothing to worry about. She said her development was completely normal and to not stress. I left there feeling much more at ease. 

Months began passing, I realized I didn't have many milestones to document anymore. She wasn't gaining new words or learning new skills and I was becoming very worried. We took her in for her 18 month check up and I was told all babies develop at their own pace, she wasn't far off track and we should just wait and see. I found out there were early intervention therapies I could have access too and I did not need a referral, it was just based off of parent concerns. I called and scheduled our meeting. Because of COVID, this meeting was virtual which was frustrating because I wasn't sure how Paisley could get accurately assessed. They called me back a couple days later and let me know she qualified for services based on an expressive and receptive language delay. She began her therapy sessions via zoom which was honestly a complete waste of time considering her age. She made 0 progress. Months go by and we finally were able to have in person sessions but we all had to wear masks which always confused me. How was Paisley suppose to pick up on speech if she couldn't see someones mouth moving? She continued to receive masked therapy for the next year and didn't really make much progress, at least not any that I felt was directly correlated to her therapy. When Paisley was two and a half, I was looking into speech therapy. I found a place and took her and after a very short eval the lady told me she believed she had apraxia. I didn't even know what that was at the time and she tried to explain it to me. I went home that night and read about it for hours. I cried again, so hard. 

Paisley was then referred to OT. I took her to the place that was in network with our insurance. We went for the initial eval and the lady was very nice and seemed to know exactly how to best support Paisley. I was super thrilled. I requested Paisley work with her but she had no room in her schedule. Paisley got assigned another therapist who also seemed nice. They told me I would need to sit out in the waiting room for apts since kids do better when parents are not present. I was hesitant, but agreed. Every session for months I would take her, Paisley would scream, in fact she would cry as soon as we took the exit off the highway and she knew where we were going. She would clench on to my neck so so so tight. They would take her to the back and I would just cry and cry. One day I remember sitting in the waiting room with my very new baby boy just bawling, a therapist told me not to worry that a lot of kids cry and she has actually had kids cry so hard that they would throw up so Paisley was doing okay. I was sick to my stomach. I couldn't take it anymore. She was not progressing and I felt like I was torturing my baby. I stopped her OT services.

Months go by and we were continuing speech and our home therapy. Paisley's struggles were just becoming more. She began grinding her teeth constantly, she was filled with anxiety, I couldn't brush her hair, pour water on her head, everything just lead to screaming. She stopped eating all the foods she once was. Her diet became so limited and I felt like I was just making the same things over and over. She wouldn't eat a single vegetable anymore like she did and had been doing for two years. A night I remember so clear, Noah was sleeping, Adam and I were on the couch and I was so numb from the pain, I'm not even sure I had tears left in me. I just kept telling Adam, I have to help her. I have to. There has to be something I can do. In that moment, I decided I had to pull it together, for Paisley and for Noah. First I came across pediatric chiropractic care, I learned all about it. Read for hours and hours and set up an apt. We traveled two hours to see someone who specialized in pediatric care with a neurological focus. We did an intensive and within those two weeks the teeth grinding almost completely stopped and I could brush her hair again. The small wins brought me so much joy. Our chiropractor referred us to a functional med dr. that was located near him. I didn't know much about functional medicine at the time, I grew up most definitely a western medicine type of girl but I was willing to try anything that could help my baby. I called and let the receptionist know we were going to be in town for two weeks and I wanted to make an apt. She informed me he had a six month waiting list. I was crushed. She told me she would send me over the intake form and in the event they had a cancellation she would call me, but it was very unlikely. I said a prayer, my heart had been hurting so much and I just asked God to please have an opening for Paisley. I finished the intake form that same day and two days later I got a call. She couldn't believe it but they had a cancellation and if I would want the open slot. Of course I took the slot and that following week we met with him. I told him everything I could think of that could possibly be important. He looked at me with warm eyes and for the first time in so long I was filled with so much hope. He talked about primitive reflexes, the gut brain connection, regulating the nervous system, what it means to be stuck in flight or fight mode, just so many things that had never been mentioned to me before. He shared a personal experience he had with one of his own children and I knew he was going to be my safe person. A person who believed in my daughter, believed she was so capable. A person who saw my pain, my grieving heart and just wanted to help. I learned a lot of brain based exercises I could be doing at home and also learned a lot about diet. He requested we do a finger prick and look for food sensitivities and was just on top of everything. 

I went home from that trip feeling educated, motivated, and empowered to support my daughter. I then looked for OT practices that worked on primitive reflex integration. I called and there was a waitlist but somehow were able to get in. I'll always believe these are moments God was showing He was there with me all along. We went and WOW they were saying all the same things the functional med Dr. was saying. They were on the same page. It only took me two years to find these professionals. And the reason I hadn't before is because all of these choices were out of pocket. They did not deal with insurance. Of course my initial plans were to utilize insurance to cover costs of therapy but I had been down that route for two years with no real progress. I knew we were going to get ourselves into debt but I had to do this for my baby. A few weeks after beginning OT, plus recommendations from the functional med dr. Paisley began saying more words. She began wanting to connect with me so much more. Her anxiety was so little compared to what it used to be and the teeth grinding had 100% stopped. She began to sing songs, label facial features, she knew her colors, ABC's, how to count. I was just stunned. How did all this happen in such a short amount of time when I had been doing "recommended" therapies for so long? Nonetheless, I was eternally grateful. 

We did hit a couple bumps in the road a long the way, her teeth grinding and hair brushing sensitivity came back when we stopped chiropractic care. Adam and I were living in two different places. We would stay three days a week down south and four days a week at home. It was exhausting and we financially couldn't keep up. We made the decision to pause chiropractic care. When her symptoms came back, I searched long and hard for a neurologically focused chiropractor in the area and found one. (somewhat) We travel about an hour to see her but once Paisley got back under care the teeth grinding stopped and I could once again brush her hair with ease. 

And here we are, present day. Paisley is now four (well actually the day this is launched is her birthday) She's growing more and more. While she still is delayed mainly in speech, I have so much HOPE and FAITH that I didn't have for the longest time. I have such a great care team for Paisley. We are now working with a nutritionist to really hone in on her diet and make sure her body is getting everything it needs. I also have connected with a couple other moms who have had their own hard journey as well. It made me feel less alone. I hope to be that friend to another mom, who's at her breaking point feeling like she can't keep going. Not all days will be easy, but you will become so much stronger.

Perfectly Paisley was created to spread kindness and to help not just my child but any child experiencing their own very unique journey. Paisley has changed me as a whole human. I know she will spread kindness and joy wherever she goes and I hope we can support so many children and parents along the way. Thanks for being here with us.