Millie, my shining star, amaze me every. single. day. I remember receiving a card for my college graduation, from my grandmother, about stars. She told me how amazing she thought I was and that I was “a star amongst the stars”. I’ll be honest – my own self doubt, mean things people had said about me in the past, my anxiety about what was to come, never allowed me to let her words sink in. Here I am today, telling you how amazing I think you are, my shining star, a beacon of light in this crazy world, and I pray that you realize your worth. Your immense possibilities. Your chance to make every day, new. My grandma thought these things of me and my angel, she and everyone else that knows you thinks them of you.
You know that neither me or your dad went to pre-k? We had no idea how much you’d learn this school year. You blew me away with your knowledge of the Bible stories (the first time you said Israelites with your little voice, my heart melted). Your teachers love you. Goodness, I’m so incredibly proud of the work you’ve done this year and the person you are becoming.
A message from your Daddy: Mia, I want you to know that I am so proud of the little girl you’ve grown to be. You constantly surprise me with how much you’ve learned and how giving and social you are. You are always trying to help make sure that everyone around you is having just as much fun as you, whether it’s helping your dance classmates to get in line for an activity, reading your new book over and over again with everyone in the room, or practicing new jokes with me to make sure you can make the next person laugh. I love to see that your priority is always to bring joy to the people around you.
Every day that I picked you up from preschool this year, I just waited for that first moment that you see me pulling up. Because the smile that lights up your face when the door opens means the world to me. I hope that is the first reaction you get from seeing me forever, because I will always want to bring joy in your life.
I am so excited for you to start the next step in growing up, and I know you’re ready for it. You are going to love school, and I can’t wait to see how much you continue to grow and learn. As I’m writing this the morning of your graduation, you just came charging out of your room and yelled “today is the day!” Every single day you wake up with that same excitement to tackle new things. I’ll always be there cheering for you the whole way.
Chris and I celebrated our 7 year wedding anniversary and four weeks later received a belated gift – we were pregnant. I told Chris by leaving clues around the house however, he was not thrilled by the news. (We had just come to the decision that we were going to wait another year before trying again…whoops.)
I did not tell our family until after the 8 week ultrasound and honestly, their reactions weren’t what I was expecting; my father-in-law said to Chris, “Come here and let me slap you.” My brother said, “Don’t you know about condoms?” My grandma said, “I’m never babysitting for you on your anniversary again.” All joking aside, it was incredibly disheartening.
Because we weren’t trying to get pregnant, I was anxious about what I did and did not do, not knowing I was pregnant. I wasn’t taking folic acid or a prenatal. I had been in a hot tub. I drank alcohol. My OB reassured me that everything would be okay and that I didn’t “mess up” the baby.
Chris and I celebrated my 30th birthday in Chicago while my in-laws watched Millie and Wells. This was the first time I had been away from Wells over night. We FaceTimed and bought the kids souvenirs. To my surprise, I didn’t feel nauseous at all and we did tons of walking, went on a skyscraper tour, sat in the sun, went to two concerts, and ate lots of different foods – zero illness or fatigue. It was a great trip.
A week after Chicago, the sickness set in. The OB recommended a vitamin and sleeping pill concoction to ease the nausea however, I didn’t feel comfortable taking it. Sleeping came easy and actually helped the nausea; I would be asleep in bed by 9pm. Wheat Thins, grapes, and unsweetened tea were my nutrition. Brushing my teeth and clearing my throat were the worst; I’d throw up every time.
I swore this baby was a girl; I was super sick when I was pregnant with Millie but not Wells. Chris and I decided that we were not going to find out the gender of this baby. Having a girl and boy already, we would be prepared either way. Many people were supportive of our wanting to be surprised. Our OB said that less than 5% of his pregnant patients wait to find out the gender. We were excited to give ourselves such a big surprise.
Like clockwork, at 14 weeks, I was no longer sick. I began taking one baby aspirin every night to best deter the preeclampsia I experienced with Millie. My newest ailment was a clicking in my lower back, which my OB called sciatic nerve pain. (I found out later that this was actually my SI joint.) It clicked the worst at night, going up and down the stairs, or if I was doing housework. I started going to a chiropractor that specialized in pregnancy adjustments and this seemed to help for about a week at a time.
We didn’t tell Millie and Wells about the pregnancy until they started to notice. Wells would smack my stomach and say, “Big, big belly.” Millie noticed when I picked her up from school one day and I was wearing a form fitting dress. She said, “Is there a baby in there?” Millie and Wells were both excited when we told them they would have a new sibling in March. Millie wanted the baby to be a girl and Wells of course, wanted the baby to be a boy. On the way to ballet one Saturday morning, Millie said from the backseat, “Mommy, let’s talk baby names. I like the name Cora.” Wells liked the name William (Baby Shark’s fish friend) and Catboy. We gravitated to calling the babe, New Baby.
At our 20 week ultrasound, we found out that the baby’s legs were measuring in the 7th percentile. We were concerned so the OB scheduled another ultrasound at 26 weeks to make sure the baby was developing appropriately. (At 26 weeks the baby’s femoral length was in the 14th percentile and the OB was not concerned.) I was struggling to connect with this pregnancy because I couldn’t call the baby by name. We decided to do a 3D ultrasound so that I could see the baby’s face. Millie and Wells came to this appointment with us. This baby was so cute and looked so much like his/her siblings.
Third trimester was rough. My hips ached, especially in the mornings, I had so much pelvic pressure, and I was peeing every hour. At 33 weeks, my ankles and feet got really swollen. I was instructed to go to labor and delivery to get preeclampsia blood panels drawn. Thankfully, everything came back normal and I was able to go home. The doctor on call had four children herself and gave me some advice on how to make it through the duration of my pregnancy. She recommended that I sleep on a wedge pillow instead of on my left side. Fortunately, my grandma had a wedge pillow that I could borrow and within two nights of using it to sleep, keeping my hips straight and not collapsed on each other, my hip and pelvic pain reduced significantly. This doctor also recommended pelvic floor therapy because she was confident I’d have a uterine prolapse in my future…terrifying. When I told this to my OB, he disagreed with her and said there was no validity to her statement. Only time will tell.
We celebrated Wells’ third birthday with a great party. Family and friends came and most everyone commented on how “big” I was. “You didn’t look this huge the last time I saw you!” and “You’re as big as an elephant.” and “Sit down. You’re making people feel bad.” and “You’re ready, aren’t you?” and “If you get any bigger, you’ll pop!” It’s bizarre how pregnancy gives people the freedom to speak upon another’s body. All I wanted to do was throw an awesome birthday party for Wells – no attention on my body or the new baby.
After Wells’ party, my schedule was free to welcome the new baby. Because we chose not to know the baby’s gender, I went through both Millie and Wells’ premie, newborn, and 0-3 month clothes and washed and organized them. Chris and I packed (and triple checked) our hospital bags, we set up childcare for Millie and Wells, I stocked the fridge, Chris set up the pack-and-play, all in preparation for the babe.
Two weeks after my first labor and delivery visit, my OB instructed me to go back in because of high blood pressure (140/95). My feet, ankles, and fingers were swollen. The back of my legs felt numb. I had gained 10lbs in a week. I developed a constant headache. Gestational hypertension had set in and my OB planned an induction for the day I hit 37 weeks. I was nervous, anxious, and excited all at once. While I was hooked up to the monitors, a nurse asked, “Are you feeling those contractions?” I thought I was just hungry. The monitor also showed two deviations in the baby’s heart rate. An ultrasound tech measured my amniotic fluid – all normal. I was told to report back to labor and delivery if my BP was higher than 160/110. I was to check my BP three times a day and elevate my feet as much as I could. I was released for the night with an invitation to come back the next week.
My last day at work was bitter sweet; I would definitely miss my students. My colleagues gave me good luck wishes but it wasn’t until I was asked, “Are you nervous? Giving birth is scary.” that it kicked in that I was leaving to have a baby. I started to tear up because with that one question, I felt seen. I was nervous. Yes, this was my third pregnancy but every delivery is different. The night of my induction, I procrastinated going to the hospital because of my nerves. At 12:30AM, Chris and I went to labor and delivery to start the induction.
Because of the time of my induction, the main hospital doors were no longer open and we had to enter through the emergency room doors. We were scanned and all our bags were searched. (Two hospital bags, my purse, my camera bag.) When we got up to the labor and delivery floor, we could tell they were working with a skeleton crew because it took at least ten minutes for anyone to check us in. When someone did come to enter my information, it was a elderly woman who struggled to type. I was hot, nervous, and getting increasingly anxious so I sat down in a wheel chair for the rest of the intake.
Almost an hour after we arrived, a nurse finally came into the delivery room. She was old and seemed completely clueless to the situation so naturally, my blood pressure started to elevate. She asked, “Why are you in today?” Are you kidding? The BP monitor started to beep. Pointing to the flashing screen I said, “That’s why.” I was hooked up to monitors, my IV was inserted, my temperature was taken, and I was Covid tested. The nurse asked me if I knew how my OB wanted to start the induction. How was I supposed to know? I asked Chris to pull up my blog post about Wells’ delivery. We found that I started with a cervix ripening medication called, Cervidil. The nurse requested this of the resident doctor who then explained to us that they do not use Cervidil anymore. He said we could start on Miso, which I remembered taking with Mills delivery. He inserted the Miso, told me to get a mole examined by a dermatologist, and the contractions started.
Just as I started to dose off, the head nurse came into the room to tell me that my Covid test came back positive. You’ve got to be kidding me. That morning, I felt really tired, dizzy, and anxious but I chalked it up to the hypertension. I remember texting a coworker that I was experiencing my “monthly illness” from the snot-nosed kids that we teach, and she responded, “I hope it’s not Covid, it’s going around again.” That prompted me to take an at-home Covid test, which came back negative and set me at ease. That afternoon, I had an appointment with my OB and I mentioned to him that I was not feeling well. When he checked to see if I was dilated, I almost passed out. I took a nap when I got home and on the way to the hospital, I told Chris that I was feeling much better – praise God because birthing a child is hard enough when you’re healthy. I asked the nurse to give me another Covid test – there’s a chance it could’ve been a false positive, right? She tested me a second time and it also came back positive. My mind was racing; did Millie and Wells get this? Will my in-laws get Covid from watching the kids? Will I have to isolate from the baby? I started to cry. My baby was inside my Covid-positive body and I was going to have to deliver being riddled by the virus.
The nurse reassured me that the treatment I would receive wouldn’t be any different from any other patient because I was Covid positive however, there were protocols and rules the hospital required:
– Anyone entering the room would be in full PPE. Chris and I were encouraged to mask.
– In addition to Chris, I could only have one additional visitor for the duration of my stay; no birth photographer for this delivery, Mill and Wells couldn’t come to the hospital to visit, and I had to chose between my mom and grandma in the delivery room.
– Chris could not leave the room to get ice, water, coffee, etc.
The head nurse told us that 90 percent of women who give birth while Covid positive, do not pass the virus to their newborn; this was reassuring. The baby would be Covid tested during the routine newborn check. She was optimistic that having Covid while pregnant would have given the baby antibodies that would be helpful once they were born. I prayed the baby would not be born with Covid or contract it from me once they were here.
At five am, my cervix was rechecked. The Miso softened my cervix but I hadn’t dilated much more. If time wasn’t an issue, I would’ve had another round of Miso however, my OB was getting on a plane for Chicago that evening and I desperately wanted my OB to be there. He knows my history, calms my anxiety, and he’s great at making sure I don’t tear. The resident doctor was adamant that a balloon foley was our quickest option for further dilation. I was nervous about this method because I had never had it done before. With the balloon foley, I would also have a urine catheter and I knew that would only add to my discomfort. The doctor said he was fine with me getting the epidural before the insertion of both catheters so I wouldn’t have to feel either. I asked, “How long does an epidural last?” It can be effective for18-24 hours. I needed to have the baby before 6pm if I wanted my OB to deliver so that gave me 12 hours. We had a plan.
A lady entered the room and introduced herself as the CRNA, Certified Registered Nurse Anesthetist. She sat down and asked, “Are you in pain?” To which I replied, “Not yet.” She asked, “Why are we doing this epidural?” This question irritated me. Am I not paying thousands of dollars for this medicine? I went on to explain the rationale. Did she not discuss this with the doctor? She began to talk to me about first time mothers who are afraid of pain – I stopped her and said, “This is my third rodeo. I have given birth without an epidural but this time I am choosing not to. If you’d like to discuss this pain management plan with my doctor…” She changed her tune. “No no no.” She agreed to give me the epidural but told me it was going to be painful because she didn’t have the pains of the contractions to hide it in. I sat up on the side of the bed and prayed to God I wouldn’t be paralyzed.
The CRNA advised me to sit crisscrossed, if it was comfortable, while the epidural was administered. I told her I was an elementary school music teacher and sitting crisscrossed was second nature. Chris stood in front of me to my left and the nurse stood to my right. The numbing needle stung. Then came the pressure. It felt like the needle was tunneling it’s way into my body. We made small talk about her children’s piano lessons and the downtown construction. My right leg jolted out and I almost kicked the nurse. It was taking so long, why was it taking so long? Finally, it was over. A cold trickle ran down my back and within ten minutes, I was completely numb from the waist down.
The nurse inserted the urine catheter and the resident doctor inserted the balloon foley, both of which I couldn’t feel because of the epidural. At 12pm, the nurse tugged on the foley but it did not come out. An hour later, she pulled again, and the ballon popped right out; it was the size of a clementine and it dilated me to 5cms. At 2pm, the doctor broke my water with what looked like a crochet needle. When I couldn’t feel my water break, I began to feel anxious. I wanted the epidural to be less numbing. I felt so helpless; Chris and the nurse had to move my body on the peanut ball because I couldn’t lift my legs. I felt so heavy. The CRNA came in and instructed me that the medicine was working exactly how it should and even though I couldn’t feel my lower half, it was responsive.
My Maw rubbed my legs and Chris scratched my head. It was enough to calm me through the last centimeters of dilation. I told my nurse that I was feeling a lot of pressure in my rear so she checked my cervix and informed me that I was 10cms dilated. I felt glad. I felt ready. Before she called in the doctor, she asked me to do a practice push and as I pushed through my next contraction she said, “Okay, okay. Stop. Stop pushing.” The nurse got on her phone, “Room 105 is ready to push.”
The nurses were like a NASCAR pit crew; raising the bed, turning on the bright lights, gowning the doctor, all in preparation for the birth. I made small talk with my OB about the baby coming before his flight for Chicago. He said, “With your next contraction I want you to push.” I crunched my upper body towards my knees, bared down, and I heard him say, “slow, slow” but I couldn’t stop what was happening. My body was pushing the baby out. In one push, I felt the baby’s body leave mine. The doctor placed the baby on my chest and I heard my Maw ask, “What is it?” The nurse answered, “It’s a boy.” He was crying and soaking wet. “Happy Birthday, baby boy.”
Chris cut the umbilical cord for our third child. I was relieved to hear that I did not tear and my placenta came out in one piece. The nurse told me, “That was the most efficient labor I have ever seen.” My legs were starting to tingle as the epidural started to wear off; I welcomed that feeling over the anxiety I experienced with the numbness. I changed my gown and watched as the nurse examined the baby. The baby’s oxygen rate was low at first but after a minute of an oxygen mask nearby, it went to normal range. Chris was standing over him, talking to him, taking pictures, and telling me how beautiful he was. The nurse stamped the baby’s feet into the baby book. I noticed quickly that he had a gap between his first two toes like his father. The baby weighed 6lbs 9oz. He was brought back to me for skin-to-skin.
This sweet, alert, baby boy latched quickly. He held on tightly to his daddy’s finger. He passed his newborn checks and scored a 9 on the Apgar scale. He tested negative for Covid; thank you, Jesus. He cried while he was given his first bath but once we was all clean, he calmed and we were able to take pictures of him on the hospital bed in the same position as Millie and Wells when they were born. Everything was going perfectly until he lost 12% of his body weight.
After many visits with the lactation consultant, I agreed to supplement his feeding with donor breast milk while my supply was still coming in. I would feed him from the breast and then pump. While I pumped, he was fed the bottle of donor milk. After 24 hours of feeding this way, he gained a little weight back.
I desperately wanted to go home. I missed Millie and Wells like crazy. I also knew my milk supply would increase in the peace of my own space. The doctors were okay with us taking him home as long as we took formula with us as a means of supplementation. We agreed, signed the appropriate papers and headed home to introduce Millie and Wells to their new baby brother, Crosby James.
I’ve found that given time, life does not disappoint in writing material.
I hate this post. I hate writing this post.
Wells was born with an interesting hairline on the back of his head. At twelve months, we took him to get his first haircut and the hairdresser said, “He won’t grow hair there.”
At 18 months old, Wells lost his eyebrows. How does one lose their eyebrows? We chalked it up to KP (Keratosis Pilaris) a skin condition that Wells has and I also have, which can block hair follicles.
Wells wasn’t saying words like the pediatrician’s developmental survey suggested. We brought this up to the doctor and she said, “Let’s give it six months and see what happens.”
Wells’ speech did not improve. He was frustrated when trying to communicate and I contacted a state funded program and got him into speech therapy. Problem solved, right?
We saw the pediatrician six more times within a two month period because of Wells’ eyes. He lost all of his eyelashes. He had a “gunk” that no drops or ointment was alleviating. We were worried about his vision.
The pediatrician told me that she was suspicious that Wells’ medical issues could be linked to a genetic disorder or an auto-immune disease. What? Chris and I didn’t have any genetic markers. We don’t have any auto-immune diseases in our family. I was scared and defensive. She explained that he had many issues; his hair, his skin, his eyes, his developmental delay. Every issue could be a stand-alone problem or it could be tied to something more. She promised she would look into it but in the meantime, she recommended an ophthalmologist to take a look at his eyes.
The ophthalmologist was quick to tell us that Wells’ tear ducts must be blocked in his nasal passageway. His tears were backing up and creating excess mucus in his eyes. She could do a surgical procedure to put in temporary tubes to help his tears drain correctly. We asked her if this issue was linked to any other disorder that she knew of and she said, “Not at all. It’ll be fixed in six months time.” We mentioned Wells’ severe eye sensitivity which she thought was being caused by his many eye treatments. She referred us to an ENT before we scheduled the procedure because of his constant nasal drip.
The ENT saw inflamed nasal passageways. He was confident that Wells’ adenoids needed to be removed. As a last ditch effort to stop the drainage, the ENT prescribed Wells a ten day, antibiotic steroid however, when that didn’t work, we scheduled the adenoidectomy. The ENT also referred Wells to an audiologist after I informed him of Wells’ speech delay. Wells passed the hearing test.
Wells did not want to wear the hospital gown for surgery. The best advice I was given was from my best friend, Lindsey who told me to ask for anxiety medicine for Wells before he went into surgery. Once that was in his system, he was loopy and fine with going back to the surgical room. (I was a crying mess.)
The ENT was able to perform the adenoidectomy while Wells was under the anesthesia from his eye tube surgery. The doctor relayed to us that Wells’ adenoids were enlarged and had pockets of puss; we were glad they were removed. The eye doctor informed us that the eye tubes were inserted perfectly and she was able to fully examine his eyes. She explained to us that Wells had blocked oil glands on his eye lids and because of this, his eyes were not making the correct balance of moisture (water, oil, and mucus). She prescribed a steroidal ointment to try to get the inflammation down on his eyelids so that the oil glands could open.
It was difficult for Wells when he came off the anesthesia. He ripped his IV out and blood got everywhere. He cried for a long time. Once he started drinking, the nurses said we could take him home. I got him a whale balloon from the gift shop that came off it’s string in the parking garage. Chris got on top of the Jeep to rescue it. Wells was happy to eat as much non-dairy ice-cream as he wanted. He had a lot of dried blood on his face the next morning and his breath smelled terrible for a week because of the scabbing.
Six weeks later we went back to the ophthalmologist for a follow up appointment. The ophthalmologist was not thrilled with the results and either were we. Wells’ eyes were still over producing mucus and tears. His eyes were still incredibly sensitive to light. We made an appointment to remove the eye tubes and she referred us to a cornea specialist for further examination.
Our ENT visit was much of the same – disappointing. He still saw significant inflammation in Wells’ nasal passages. He recommended that we see an allergist to rule out environmental allergies for the cause of his inflammation and continued nasal drip.
Our next appointment was with the dermatologist, an appointment that was scheduled six months prior. (Hindsight 20/20 I wish this would’ve been the first appointment we went to.) We spoke to the doctor about Wells’ hair loss. We were very concerned with the condition of his skin. We told her about his recent ENT and eye appointments, as well as his speech delay. The dermatologist was hesitant to say anything definitively but she believed it to be Alopecia Areata, an autoimmune disease that targets inflammation of the hair follicles. She went to get another dermatologist for a second opinion and I cried thinking about the struggles Wells would have to endure.
The next dermatologist was not sold on an Alopecia Areata diagnosis because it would be unusual for the hair loss to start with the eyebrows and eyelashes. She asked us more questions about Wells and his different medical issues when she noticed Wells squinting while looking at my phone screen. She asked, “One final question, does Wells have light sensitivity?” Wells has had severe light sensitivity his entire life. When he is in the sun he must wear a hat and sunglasses or his eyes will roll to the back of his head. His eyes water uncontrollably in bright light. The night before our appointment, Wells complained to us that the TV was too bright. When we told her this information she said, “I have only seen this once, a long time ago during residency, but I think Wells might have a genetic disorder called IFAP.”
The dermatologist was positive that Wells’ issues were being caused by an autoimmune disease or a genetic disorder but she couldn’t be sure which without a blood test. Genetic testing is incredibly expensive so she put in an order through our insurance which took a couple of weeks to get approved. In the meantime, she wanted us to use topical cream for Alopecia just in case that would’ve worked, we would know that the inflammation was caused by the autoimmune disease and we wouldn’t have needed to go through the genetic testing. Not only were these topical meds expensive, I didn’t want to put Wells on any steroids that weren’t absolutely going to solve his problem. Once the order for the blood draw cleared through the insurance, the dermatologist put in an order for the lab to draw blood and check his DNA for two specific compromised genes associated with IFAP syndrome.
Wells’ blood was sent out to a lab in California. The test concluded that his LRP1 gene and MBTPS2 gene were compromised. We were contacted by the dermatologist almost immediately after receiving these results and she confirmed that Wells has the genetic condition, IFAP. IFAP stands for Ichthyosis Follicularis, Alopecia, and Photophobia. IF – his skin, A – his hair loss, and P – his eye sensitivity. This syndrome is a rare X-linked genetic disorder reported in only 40 patients, ever. Don’t Google pictures. My poor baby.
Known to occur in people with IFAP syndrome is corneal abnormalities including a defective tear film and recurrent atopic keratoconjunctival inflammations (exactly what was happening with Wells’ eyes). Did we need to do the tear duct surgery? No. That was never going to fix Wells’ eye issues however, at the time, we were unaware of this genetic disorder. We have since informed the ophthalmologist, who had never heard of IFAP syndrome, of Wells’ diagnosis and she is now researching other cases to better help Wells.
The steroidal cream that Wells was prescribed after his ocular surgery was too strong to be used long term; it could cause too much pressure in the eyes which could lead to glaucoma. We now have to administer an eye drop four times a day and it is not fun, Wells fights us every time. We found out that the drops burn and blur his vision (I contacted the cornea specialist about how it was a terrible experience every time we’d administer his eye drops and she informed us that they are not pleasant but entirely necessary.) It’s been incredibly difficult. He is scheduled to get the eye tubes removed next month as well as a more thorough eye exam by the cornea specialist, all while under anesthesia.
It was time to see the allergist. The ENT wanted to rule out food and environmental allergies for the cause of his nasal drip and inflammation. We explained to the allergist that Wells had been recently diagnosed with IFAP syndrome and that eye and nasal lacrimation are common symptoms of this rare disorder. The doctor called for a full allergy panel, which was administered into Wells’ back. He sat on my lap, facing me, while the nurse pressed the spokes into his skin. He cried and it upset Millie, who came to this appointment. The nurse came back with popsicles for both of them and they were instantly calmed. After ten minutes, the test was complete and Wells showed no signs of allergies. The allergist concluded that any drainage Wells was experiencing was not food or environment related. We were able to rule out allergies and add these drippy symptoms to the list of IFAP complications in Wells’ case.
To better understand IFAP syndrome and what it means for Wells and our family, we saw a geneticist and a genetic counselor. The geneticist was extremely transparent about how fortunate we were to have a doctor (his dermatologist) recognize this syndrome and to “cherry-pick” which chromosomes to test in Wells’ DNA. He told us that there are only 9 recorded cases to have the same mutation as Wells. This syndrome goes undiagnosed because people with these issues do not connect their problems to one diagnosis, and even if they do, they do not know where to begin (the expense of funding a wild-goose-chase of genetic lab work is astronomical). The geneticist believed IFAP to be congenital, meaning the severity of which Wells was born with, will be what he has; for example, he won’t develop mental retardation (a symptom some experience with IFAP). We will see the geneticist yearly to update him on Wells’ developments to hopefully help others learn about this syndrome. He also gave us his card if our new baby is a boy. This way, he can order genetic labs right away.
It was the genetic counselor who explained to us how Wells acquired IFAP syndrome. Males have an X and a Y chromosome, I gave Wells one of my X chromosomes and Chris gave Wells his Y (I couldn’t give Wells a Y chromosome because I don’t have one, I have two X chromosomes because I’m a female). One of my X chromosomes is normal and the other X chromosome is compromised. Because I have one good X, my symptoms of IFAP are lessened therefore, I’m a carrier of the syndrome. Unfortunately, the X that I passed onto Wells was my compromised X chromosome. He doesn’t have another X to combat the compromised X, so his symptoms of IFAP are full force. My father has all of Wells’ same symptoms. His mother, my paternal grandmother, is a carrier. Her father had these same symptoms. The genetic counselor said this is a males syndrome; they give it to their daughters who become carriers, and those daughters give the syndrome to their sons.
Millie could be a carrier for IFAP syndrome. I could have given her my compromised X but so far, she doesn’t have any IFAP symptoms. She can chose to be genetically tested before she decides to reproduce. If she is a carrier and has a boy, he would have a 50% chance of having IFAP syndrome.
When baby number three is born (we do not know gender) and if the baby is a boy, blood will be drawn while we are in the hospital to be sent to the lab to test for IFAP. At this point, I am hoping that this new baby is a girl OR a boy with my non-compromised X chromosome.
Severe cases of IFAP have noted kidney abnormalities. To make sure Wells’ kidneys developed correctly we took him to get an ultrasound. He was such a brave boy when he was laying on the table. I put my head next to his and we sang Mickey songs together. The tech ran the ultrasound on his belly and his back. She complimented Wells on how well he did and me on my singing. We received the results within the next hour. Wells’ kidneys were sonographically normal and in the normal range for renal dimension. This was a great relief.
In some cases of IFAP, mental retardation is present. With Wells’ CAS (childhood apraxia of speech) diagnosis, we were referred to a neurologist to make sure Wells’ brain was appropriately developed. When we arrived, the nurse gave Wells a sheet of emoji stickers that he stuck to the patient table in a circle and pretended to play duck-duck-goose with them – it was adorable. The neurologist was unfamiliar with IFAP and wanted to test Wells to get a baseline of his development. She asked him questions like, “touch the door, after touching the floor”. She had him stand on one leg. She asked him to point to certain colors, what his best friend’s name was (he said Mia), and to sing his favorite song (the PJ Mask theme song). She was aware of his apraxia and noted that she observed this in his speech however, everything else she tested him on was either developmentally appropriate or advanced for his age. We were thrilled.
The neurologist explained to us that 28-30% of children with IFAP develop seizures. She told us what to look out for if Wells starts to seize and that sometimes seizures don’t look like they do in the movies; he could stare off and not come out of it, one limb could rhythmically move, etc. We have a plan moving forward if he develops this part of the syndrome and until then, Wells does not need to see neurology on a regular basis.
Most recently, we went back to the ENT for the final follow up for Wells’ adenoidectomy. Unfortunately, Wells continues to have a nasal drip. After being tested by the allergist at the ENT’s request, we found that Wells has no allergies alas, his nasal drip is not caused by allergies. The doctor checked to make sure Wells hadn’t put anything up his nose (he did not). He checked his ears and throat (both of which looked great). It was determined that Wells’ drainage is IFAP related but to what extent, the ENT wasn’t sure. While he discusses the possibilities of why this is happening with the geneticist, he put Wells on a steroidal nasal spray to reduce his inflammation. The ENT believes this will be a chronic issue for Wells.
Through the Ohio Department of Health we are in the process of applying for CMH which stands for Children with Medical Handicaps. This health care program will help to offset the costs of Wells’ medical needs.
This diagnosis is beyond scary. All I want to do is help my baby and take this away for him. Unbeknownst to me, I was the one to give this to him. There is a perpetual feeling of guilt that I have to suppress as I need to focus on what Wells is going through and his needs. I will forever be his advocate as we navigate this syndrome, together.
Wells’ speech therapist’s contract was not being renewed by the Help Me Grow organization that Wells receives services. We were devastated to hear this because Wells had gotten comfortable with her. At our last session, she gave me a packet of information about a motor speech disability called, Apraxia. After working with Wells for six months, it was her professional opinion that I look into this with his next speech therapist. Huh? – I thought he was just a little behind…
Before meeting with his new therapist, I Googled Childhood Apraxia of Speech. I learned that it’s an uncommon disorder where Wells would have difficulty making accurate motor movements when speaking. In CAS, the brain struggles to develop plans for speech movement. With this disorder, the speech muscles aren’t weak, they just don’t perform normally because the brain has difficulty directing the movements. CAS is treated with speech therapy and the Help Me Grow program set Wells up with a speech therapist who has advanced training and expertise in Apraxia.
Jody, his new speech therapist, met with us to give Wells an evaluation. She heard the dropping of consonants, the inconsistency of speech patterns, and saw his frustration when we couldn’t understand what he was trying to say. She was quick to inform us that while CAS couldn’t be diagnosed until age four, Wells most certainly has a motor speech delay – something he won’t just grow out of. Therapy is the only treatment for CAS and we go two/three times a week.
When we repeat words how Wells pronounces them, back to him for example, “ickey” for Mickey, he tells us we’re saying it wrong. He knows how words are supposed to sound, he just can’t make his mouth do it. It’s heartbreaking to see him struggle. To speak correctly, Wells’ brain has to learn how to make plans that tell his speech muscles how to move his lips, jaw and tongue in ways that result in accurate sounds with normal speed and rhythm. He can make the “m” sound however, he cannot connect it so it sounds like “mmm” space “icky”.
In six months, Wells has mastered isolated consonant sounds “h”, “m”, “s”, “p”, “b”, “f”, “w”, and “sh” at the beginning of words. We are practicing those sounds with syllable combinations ie. “fa” and “moo”. Kinesthetic movements help Wells remember how to correctly manipulate his mouth. Right now, we are working on the word, “open”. He does not naturally put the “p” sound in the middle of the word. We practice by making a big, “o” with our arms and then move our hand under our chin like we’re blowing a kiss. When the words are broken down, Wells has more success.
Wells will no longer receive paid services through the Help Me Grow organization when he turns three. At three years old, children can receive disability services through their public school system (pre-k). We have decided to not enroll Wells in the pre-k program through our district. The school only offers a half-day service, four days out of the week and that does not work with our work schedules. To make sure Wells is supported with his speech needs, we will continue to see Jody and charge our health insurance for the visits.
Speech therapy at two years old : Wells often falls asleep in the car before we get to speech therapy. He runs down the hallway like Sonic, and counts the stairs when we leave. When he wears snow or rain boots, they often get in his way during floor activities so they usually get thrown off. Wells will randomly get into a yoga pose. If an animal is brought up, like a frog or bunny, he’ll act it out. It’s fun and I’m always proud of him.
Mill could not start Kindergarten this fall because of her November birthday. I strongly believe she would have done absolutely fine with kindergarten curriculum however I knew she’d benefit socially from a preschool experience. We decided to enroll her at the private, Christian school closest to our home (it came with great reviews from neighbors and colleagues).
When I visited the school, I was impressed with what I saw; sight words on the walls, daily schedules, letter identification, bookcases of age appropriate books, and clean spaces. I think I was expecting pre-school to look like the daycare facilities we toured when she was younger but this was far from that.
Millie and I went to drop off her emergency medical information and the administrator allowed us to visit her classroom and meet her teacher. Summer classes were in session so when we got to the classroom, Millie was more interested in meeting the students rather than her teacher. They were working on a, “write the room” activity and Millie just joined in. I met with the teacher while she worked and played. When it was time to leave, Mill cried and asked why I didn’t sign her up for summer classes! She was so ready for school.
Getting school supplies for Millie was fun, pricey but fun. She wanted everything to be pink and sparkly; her backpack, her lunch box, her pencil pouch, you name it. We decided on a Barbie lunch box (that was big enough for both breakfast and lunch containers) a Skip-Hop preschool-sized backpack that looks like a koala, and a pencil pouch with a glittery butterfly. We filled her backpack with everything from her class list; glue sticks, safety scissors, colored pencils, crayons, skin-colored crayons, washable markers, and a paint set.
Dietary Needs: I was vegetarian when Mill was born and she was exclusively breastfed. After she’d eat, she’d projectile vomit, and her doctor told me to try limiting my dairy intake (cheese was three parts of my food pyramid). Chris also has a lactose intolerance so this change of diet benefited him as well. Four years later and veganism is our lifestyle. State law mandates that each child receive a milk (specially from a cow, 2% dairy) every day. To not have a carton of milk placed in front of my child, I had to have forms signed my Mill’s pediatrician stating she has a lactose intolerance and that she should be given water in place of milk. Oat and soy milk are allowed however, Millie doesn’t drink either.
Included in the weekly price, her school provides breakfast, lunch, and snacks. I highlight the monthly menu with the foods Millie can eat – apple sauce, tomato soup, carrot sticks, etc. I still pack her breakfast, lunch, and two snacks to ensure she has plenty of food to eat during the day. I also pack a small, daily joke card with her lunch because Mill is super into telling jokes lately. Her teacher reads it to her and she’d recite it back to me when she came home. Here’s some of her favorite lunches:
– left over pizza, grapes, cucumbers
– Pasta salad, peaches, dairy-free laughing cow cheese
– Sandwich (white bread, butter, and strawberry jelly) chips, apple slices
– Black bean and corn dip, tortilla chips, blueberries
The week before school started, I tried to best prepare Millie for pre-k. I made her lunch in the new containers so she could practice opening them. I created a schedule for her mornings and posted it on her closet door so that she would know the routine. I bought hanger labels with the days of the week on them so that we could pick out her outfits ahead of time. We read books about starting school. We took, “first day of school” pictures days before the actual first day of school so the first morning wouldn’t be so chaotic.
I was really anxious about Millie starting pre-k. Chris and I thought up worst case scenarios; what if she went into a bathroom stall and there was poop in the toilet? Would she know to pick a new stall? Would she try to flush it? Would she just hold herself? All the prepping in the world wouldn’t prepare her for every possible encounter she’d experience on her first day.
The night before Millie’s first day of school, I prayed with her as she laid in bed. Before I closed her door, I heard her say, “I can’t wait till I come home to celebrate your birthday mommy.” My heart melted. In the hustle and bustle of the new school year, I completely forgot about my birthday. She’s so incredibly thoughtful. I cried on the couch for the next 10 minutes about my baby (my early baby!) starting school. The next day, I turned 30 and Millie had her first day of pre-k.
Chris took Millie to school in the morning because I started back to work, my ninth year teaching. He said Millie told him that she was nervous which of course made me worry. When I picked her up from school at the end of the day, the nerves were gone. She told me she made a new boy-friend, Daxon, and her teacher said she had a great day. She even slept during nap time! When I told her that she’d be coming back the next day, she was excited.
I was so proud of Mill the day her teacher told me that she was so helpful to a new student. At four years old, her character is so kind. Everyday we received excellent reports on Millie’s work and behavior. They have a weekly special; art, gym, or music. She has learned about about the life cycle of a tree, how different color apples taste, the difference between warm and cool colors, Scripture, etc. Some days she’d come home with her hair styled different – she had the longest hair in her class so of course the other little girls play with it and the teachers!
So far this year, they have had a fall festival where the pumpkin patch came to their school and gave out pumpkins and doughnuts, a trick-or-treat event with the old folks home next door, the firemen did a presentation, and a reunion with a family who’s been apart because of active duty. We are so excited for their upcoming Christmas program. Millie has been practicing hard on the lyrics and the dance moves of both songs they’re performing.
Adventures from June-August; kinda like a list, more like a diary entry. A post to remember this summer.
We kicked off the summer with a trip to Louisville, Kentucky. We were visiting friends, Kristin and Kyle (Wells’ Godparents), and planned to see a botanical garden along the way however, it poured down rain. We changed plans to an indoor adventure instead. We stopped at the Louisville Slugger Museum to see the worlds largest baseball bat. The ivy on the wall and the hall of fame stars on the sidewalk were super cool. Millie picked out a pack of Chicago Cubs baseball cards and Wells loved swinging his blue, souvenir bat. We stayed the night with the Merkle’s, where the kids loved playing baseball in the basement with Uncle Kyle, and in the morning we left for the Cincinnati Zoo.
We used our Wonderfold Wagon at the zoo. There were a lot of hills so Chris was the one doing the pushing. Many people complimented our wagon and asked us questions about it. Millie and Wells have the freedom to move around while also being safe; I love it and wish we would’ve bought it sooner. We fed the giraffes expensive pieces of lettuce, ate at the food court, and saw the sifakas jumping around. Both kids love Fiona, the premature hippo who’s basically a celebrity now that Cincinnati needed some positive press after the death of Harambe (R.I.P).
The next weekend we went strawberry picking. I was inspired by a friends Instagram story; I never knew Ohio had strawberry fields. Chris has fond memories of strawberry picking as a kid and both Millie and Wells love to eat strawberries so I figured this was something fun we could do as a family. We were given two buckets and were told the best area for the ripest strawberries. We were surprised by how small they were compared to the strawberries we buy from the store. Wells was not interested in picking but he was interested in eating them! He sat down in the strawberry plants and turned the caboose of his khakis, pink. Millie was not enthused about touching the berries, especially the over-ripe ones that felt “squishy”.
Unfortunately, both Millie and Wells started this summer with a nasty cold; the snot was never ending. We seem to catch every germ. We wanted to play with friends and explore new places but we also wanted to keep everyone safe. Monday, Wells took his first bath in the sink. While Chris and I attempted a tile reno, I sat Wells on the counter to play in the sink water. Before I knew it, Wells had sat in the sink, fully clothed. I stripped him down and let him play in the water. On Tuesday, we roasted marshmallows using our tabletop fire pit. Neither kid enjoyed the taste of burnt marshmallows. Wednesday, we went to the thrift store and bought a water table, two ladles, and a new bathing suit for Millie. Wells tried to feed me octopus soup! We had a great time playing outside and eating strawberries! Thursday we ran errands, Millie had a fever, Aunt Lindsey came over, and Grandpa came into town. Friday we went to the library and signed up for the summer reading program. Wells very clearly said, “library”. I am so proud of how hard he’s working to communicate.
Here were some of their favorite reads:
No Pants by Jacob Grant
1, 2, 3, Jump! by Lisl H. Detlefsen
Goldfish on Vacation by Sally Lloyd-Jones
The Flower Man a wordless book by Mark Ludy
June went by entirely too fast. The kids enjoyed finger painting, chalking, and bubble blowing. We saw lots of family members at my cousin Carson’s graduation party and afterward both kids got to order their own pizza from Mod (Millie says she won’t be putting cucumber on her pizza again). We went to Hobby Lobby to get a decorative welcome mat for my mom who just bought a condo in Ohio and while I pushed Wells in the cart, he scared an old lady who was passing by! He said, “Ah!” and pointed at her as soon as she turned down our aisle. He’s a rascal. My in-laws came to town and we went out to eat at BrewDog to celebrate the closing of their new home. (The kids are getting ready to have all of their grandparents in Ohio!) Millie ate a vegan hamburger meal and Wells ate a soft pretzel. Wells enjoyed playing ladder toss, outside, after the meal.
July started with COVID. I went to a worship concert, unmasked, and another woman I went with tested positive after, too. The worst part of it was we were sick during the Fourth of July and my cousin Donaven, who’s currently serving our country in the Navy, came home to visit. Thankfully, we still got to see him (from six feet away). The kids watched Red, White, and Boom on the T.V while eating banana splits in their sleeping bags. Our town set off fireworks at the local high school that we could see from our backyard, too!
We have season passes to the Franklin Park Conservatory and explored the children’s garden with Lindsey, Logan, and Ben. The kids enjoyed pushing the hula hoops down the hill, watching and performing puppet shows with mangy-looking puppets, playing restaurant with the plastic food in the mud house, and pretending like they were birds making a nest of sticks. Wells spent time at the koi pond watching the fish. He was fascinated by the toy train. Wells was apprehensive about wading in the sandstone creek and wouldn’t let go of my hand but he grew confident and explored on his own.
Food competitions are regularly watched in our home – we’re currently undertaking Master Chef. We decided to have a baking competition of our own. Millie, Wells, and I mixed the cupcake batter and of course, they licked the beaters. We’re vegan. No raw eggs were consumed. Mills were topped with hot pink icing and Wells’ were blue. Of course the icing stained their lips and teeth. I let them add sprinkles and we tasted both cupcakes. It was decided that Millie’s tasted better because her sprinkles were less crunchy than the ones that Wells used. The cupcakes were served on Mickey and Minnie Mouse plastic party plates that the kids wouldn’t let me not buy at the store.
I got the feeling like we weren’t doing enough with the kids this summer. (Now that I’m typing everything out I can see that was absurd and just my anxiety.) I think because last summer we spent a week at the beach – financially, that wasn’t in the plans this year, I still wanted to do something special. I looked for activities relatively close so that we could plan a day trip. I had friends go visit the Ark Encounter in Kentucky and really love it. Chris was on board with the trip so we left on a rainy, Saturday morning. What better weather to visit the Ark? The car ride was three hours long but the kids rode perfectly. We took Noah’s Ark books to read along the way and we ate Tim Hortons; they love the birthday sprinkled Timbits.
When we got to the Ark, we had to take a charter bus to get on location. Wells thought he was hot stuff getting to sit in his own bus seat. Millie was so excited to see the beautiful, bright rainbow arch (Gods promise) entering the complex. The Ark was insanely massive; bigger than I could’ve ever imagined (the dimensions are actually listed in the Bible). I thought the kids would be overwhelmed by the size but they were excited to see the different exhibits inside. Millie thought the ancient animals (wax models) in the cages were creepy.
There was a petting zoo on location with lots of goats. Millie did not touch the goats (I don’t blame her – poop pellets were everywhere.) We got to watch a live, animal show with a scorpion (which glows under a black light – who knew?) a sugar glider (which made us miss Cooper), and a pig named, Festus that the kids got in stuffed form at the gift shop on the way out. The buffet on location was delicious and super accommodating to our vegan diet. There was a really awesome playground but Amelia got knocked over and the fun was over. Both kids fell asleep as soon as they were strapped in their car seats and slept the entire way home.
The next week of summer vacation was packed with fun activities. Millie and Wells made crown crafts from the library and decorated them with gems and stickers. We went to the pool and Millie went under the water with MawMaw (she did not like it). We took a trip to the Columbus Zoo with my friend Katey and saw the elephant baby, Frankie for the first time (He was so fuzzy!). Uncle Nick’s girlfriend came to town and we all went out to eat at CapCity Diner; it was our first time eating there, they gave us a private room, and the food was delicious!
Our last weekend of July was spent in Ligonier, Pennsylvania with our friends, and Millie’s Godparents, Jane and Todd and their two children, Maisey and Luca. Of course Mille and Wells were excited about Daniel Tiger’s Neighborhood but they were most anxious to see their friends. The night before we were supposed to leave, Wells tripped in his crocs while helping me water the neighbors flowers. I could tell by his cry that he was in a lot of pain. He wasn’t bearing any weight on his left foot. Immediately, I knew he could have a toddlers fracture. We let him sleep it off and examined him the next morning. He was putting weight on the injured foot but was still limping. We decided to go forward with our PA trip and keep him mostly in the stroller. If his foot got worse, we’d have no choice but to get it checked out.
To start our road-trip, we grabbed Tim Hortons and I entertained the kids by putting Mickey Mouse characters on Chris’ seat (it’s the little things). Once we got there and met up with our friends, we went to the water park and the girls immediately ran to the kiddie splash area. Maisey wasn’t afraid to put her head under the water but Millie wasn’t trying it. Maise ended up drinking a lot of the water and was sick later in the evening, poor girl. Wells and I ended up standing under a bucket that poured an intense amount of water on my back. We had a great time swimming together. Luca dirtied a diaper and we put on dry clothes to enjoy the amusement park.
We grabbed a soft pretzel and some lemonade before watching the end of a Daniel Tiger show. There was a meet and greet afterward with Katerina and Daniel – Wells stayed on my hip and Millie was just curious enough to wave to them from afar. We rode on Trolley through the neighborhood (Millie informed Maisey that all the characters were made out of cardboard) and the weather shifted. Just before the sky opened up, we ran back to the parking lot and managed to stay dry while it stormed the rest of the afternoon.
After a thirty minute drive, we checked into our hotel. We met up with Jayne, Todd, Maisey, and Luca for dinner at a restaurant called, Sharkys. Wells loved their aquarium and we loved the food. That night, we all changed into our pjs and played games in the hotel lobby. The kids exchanged gifts, colored My Little Ponies, played with clay, ate sprinkled popcorn, had a dance party; it was awesome.
In the morning, we shared a breakfast table with the DiMascio’s and said our goodbyes. We left for the Pittsburgh Children’s Museum where they had a Daniel Tiger exhibit. The exhibit was amazing; it looked just like the show had come to life. We saw some of the original puppets from Mr.Rodgers’ Neighborhood and Mr.Rodgers’ red sweater. Wells enjoyed building Daniels neighborhood with blocks. Millie added a leaf to the “thank you” tree. The kids loved the interactive clock shop and the musical radio.
The rest of the Pittsburgh Children’s Museum was also loads of fun for the kids. Millie climbed up a super tall rope web, they launched balls on a track with a pulley system, they made car ramps, and created a musical assembly line. Wells and I went into a room at an angle. I literally ran us both into a wall (my knee caught the brunt of it.) Millie loved playing with the sand art and Wells liked the seesaw that blew bubbles. We grabbed a snack at the cafe before we left; Wells loved the bite-sized pancakes. The yellow bridges leaving Pittsburgh were cool. We definitely will visit PA again.
August was a blur. I started to have back-to-school meetings and by the 22nd we were all in. I tried to make each day we had left together, special. We visited the Columbus Zoo with my dad; the kids always have a great time with Papa. He rode on the carousel and bought them blue and pink cotton candy. Wells tried to feed the baby gorilla popcorn and the baby fell backwards! It was so sweet. We went to the Ohio State Fair with Chris’ parents (Grandma and Grandpa), his brother (Uncle Nick), and my friend Shauna. Both kids enjoyed riding on the rides and eating pineapple whip! We even watched a pig race. We swam a couple more times at Mawmaw’s pool; Millie was brave and went down the water slide! At home, we made cement garden stones, played with modo (a fragrance free play-dough), baked banana bread, and completed craft kits.
For my 30th birthday, Chris took me to Chicago. This was the first time that I spent a night away from Wells and we were gone for more than 48 hours. Chris’ parents stayed at our house and we FaceTimed them often. Both kids slept well for them! I was so impressed. My babies are growing up and it’s hard to believe that they won’t stay 4 and 2 forever.
Maw yelled to the kids, “Stay off the rocks around the pond; they’re wobbly!”
On an unusually warm day in early March, Millie and Wells were playing on my grandmas patio. Wells was finding pebbles (Presumably putting them in his mouth. Once, he spit out four rocks into my hand.) and Millie was rearranging a fairy garden as I tidied up their things, preparing to leave for the day. We waved goodbye to Maw as I backed out of her carport. I called Chris to meet us at the park on his way home but not five minute later, I called him back to tell him that both kids fell asleep. Babies sleeping in car seats always look soscrunched.
Unbeknown to me, Maw decided to leaf blow her patio. Without following her own advice, “Stay off the rocks around the pond; they’re wobbly!”, she stood on the rocks to blow away fallen leaves. I received a phone call from my mom, “Don’t freak out.” Maw was on her way to the hospital.
While leaf blowing, Maw stood on a wobbly rock and fell onto her hip, precisely on the edge of her patio step. She turned herself onto to her stomach and army crawled back into the house where she contacted my uncle, trying to avoid an ambulance ride. While she waited for him to arrive, she crawled herself into the kitchen and ate a lemon cookie. Who’s grandma breaks their hip and struggles into the kitchen to curb her sweet tooth?!
My uncle did not feel like he could safely lift my grandmother so begrudgingly, Maw went to the hospital in a squad. I was desperate to be with her but due to COVID restrictions, only one person could accompany her during her stay. Maw refused pain medication. She was taken for an MRI where it was determined she had a fractured hip bone. The next day, she received a full hip replacement.
Thank God the surgery went well.
The next day, Maw went home to recover. I was in disbelief with how quickly she was discharged. Maw had two weeks of around the clock, family supervision. I stayed over one night, Wells came with me because I was still breastfeeding, and that helped to lift her spirits. It was difficult to see her in pain as she maneuvered her way on and off the bed. I ordered her a hip kit that had long levers to help her with her independence without having to bend at the waist. I also installed a toilet lift so she didn’t have to squat down to use the restroom. She had physical therapists come to her house and they were extremely kind. “Most seventy year olds haven’t left the bed yet and you’re getting around so well!”
As Maw was healing, she also felt guilty for leaving me without childcare. She watched both babes while Chris and I work and with this falling accident, she was out of commission for at least six weeks. I called thirteen child care facilities, desperate to find a reputable establishment that would accept my kids in the middle of the school year, and most could not accommodate both children. Finally, I found a school that could take both kids however, they were almost $3K a month – completely out of our budget.
We were incredibly blessed with beautiful people willing to help us during this stressful time. My friend Lindsey was available to watch the kids on her days off and my friend Shauna babysat the kids while she worked from my couch. My friend and co-worker Amy spoke to her in-home childcare provider who was able to watch my kids on Tuesdays and Thursdays. She was affordable, an easy commute, and had glowing recommendations from other teachers who trusted her care. She was reliable and kind. This was a God send.
A week into our new childcare schedule (Chris watched the kids while he worked from home on Monday and Friday, Tuesday and Thursday the kids went to Rhondas, and Wednesday was a wildcard.) we noticed bite marks on Wells. One on his arm and one on his foot. I noticed that the size of the bite mark was small but there were a lot of teeth. It was confirmed that a little girl with dwarfism was eating Wells up. We found out that she had done this to other kids before and with a new baby brother at home, she started biting again. Another bite happened on his belly and one on his leg. His parents were mortified. Wells learned to say, “No bite!” Which came out as, “O ite”. They actually became sweet friends.
Millie loved playing with the children all day. There were two girls her age; they’d put on tattoos, draw pictures, make necklaces, and put on singing performances like JoJo Siwa. Millie would help me pack their lunches the night before; picking out what fruits and vegetables she wanted included. For breakfast, I would put a pack of pop tarts in Millie’s lunch bag and it was her job to share one with Wells. Millie’s social interactions confirmed for me that she was ready for preschool in the fall (more on that in a later post).
Rhonda was so great with our Vegan lifestyle. If there was a birthday celebration, she would make sure there were dairy-free cupcakes for my kids. She gave every child an Easter basket and ours had vegan treats and thoughtful, personalized gifts. The kids noticed that others were eating chicken nuggets for lunch so Millie mentioned that they eat vegan “chicky nugs” at home. Rhonda bought them and kept them stocked in the freezer. It was extremely comforting knowing the sitter was accepting of our dietary needs.
Since starting childcare outside of our home, our family has never been more sick. Someone has had a snotty nose, sore throat, fever, goopy eyes – you name it, since March. We were in and out of doctors appointments every other week; amoxicillin for ear infections, two different eye drops, Tylenol Fever Reducer, Tylenol Cold and Cough. We had a fully stocked pharmacy in our medicine cabinet. Anytime I would try to plan something fun for us to do on the weekend, Millie would spike a fever and Wells would have snot hanging from his nose. We rotated viruses around the house. The germs from childcare were worse than my first year teaching (and I thought that was a kick to the immune system). I’m praying that Millie will have some antibodies to help her with the germs she’ll be around in pre-K.
Wells’ second birthday party was postponed – if we had the party on its scheduled date, it would have been the day Maw got home from surgery. A month after the party was originally supposed to be held, we threw Wells a shark themed birthday and Maw was there to help us celebrate. Maw didn’t let her hip keep her from the kids during the holidays. Millie and I went over to Maw’s house for Saint Patrick’s Day and we decorated shamrock cookies with green glitter and crafted a clover garland out of toilet paper rolls. For Easter, we went to Maw’s community celebration where the kids got to hunt for eggs and win door prizes. It was fun for the children but I was concerned about Maw getting hurt; she could have fallen down, gotten pushed over by a kid, tripped. etc. My anxiety was high.
Three months later and Maws hip healed. She was diligent with her therapy and put in the hard work to feel better. She has a gnarly scar. Her knee is giving her trouble but the hip surgeon mentioned that her knee locked up during the surgery – it could be something she gets work on down the road. She watched a video of a hip replacement on FaceBook and the force that was used to hammer the joint in place could have very well been what affected her knee. Wells will continue to need childcare in the fall and we will split the week between Maw and Rhonda. This will allow Maw to schedule appointments during the week and some much earned rest time after running after Wells.
Chris had a week off of work before he started his new job at Boeing and to spend some quality, family time together, I planned us a two-day mini getaway. Through Groupon, I booked a night at Great Wolf Lodge for $119 (I was amazed at what was included for that price. That’s how much a regular hotel room would cost and this one had an indoor water park!). I packed up the food, buckled the kids into the Jeep, and when I checked our reservation to GPS the address to the hotel, I realized I booked the wrong one. (Insert face palm here.)
We were supposed to be headed south for one hour however, I booked our reservation at the Great Wolf Lodge two hours north of us! I quickly called Great Wolf’s customer service and they were extremely accommodating. Within ten minutes we had everything figured out; I cancelled my incorrect reservation and made a new reservation at the correct lodge. Thankfully, this resort had rooms available and because of COVID, they were not charging cancelation fees.
Walking into the lobby at Great Wolf was like entering a log cabin mansion. There were carved tree statues and signs, taxidermied animals, log stumps for chairs, etc. Ropes led the way to check-in and because it was a weekday after 4pm, I walked right up to the counter. We were given wristbands that doubled as our our room keys and a schedule of all the children’s activities at the lodge. I met Chris back in the parking lot and we lugged the kids and our overnight bags up to our room. The room was decorated like a hunting lodge; antlers as light fixtures and moose prints on the carpet. The room itself was incredibly spacious. It had a sitting area, a table and chairs, a mini fridge, and a microwave. The kids were so excited to be someplace new. Millie picked out her bed, our room had two queens, and we got our bathing suits on for a night in the water park!
It was 6pm when we walked the kids down the hall in their hooded towels, looking like baby Jedi, to go to the water park. The children we passed were melting down, “I don’t want to leave the pool!” Chris and I nodded at the parents for emotional support. Every family there looked like us; frazzled, tending to children’s needs, and over weight (No judgement – I felt comfortable letting my stretch marks show!). We felt like we found our people. Many families were leaving the water park when we were just arriving. We were grateful to be getting there at a less populated time.
As we walked into to the water park, we were confronted with humidity and the smell of chlorine, both of which we welcomed compared to the frigid, weather outside. The sound of rushing water and children shouting made it hard to hear Wells saying, “wow” as he was taking in his surroundings; I could read his lips and paired with the astonished facial expression, it felt like a mom win. We started in water that was knee deep and it was the perfect temperature. Millie saw the slides and fearlessly slid down them with Wells and Me at the bottom to catch her from going under. Reluctantly, Wells went down the slide but after he realized it was fun, we couldn’t tear him away.
It was nice to be able to let the kids play in water without coating them in sunscreen. Wells loved the water squirting out from the fountains in the floor. He would put his foot overtop of the holes and blast himself and others with the water pressure. Millie didn’t want to go down any of the big slides and we didn’t push her to. Both kids liked the warmth of the “hot springs” which we called, the hot tub for babies. Wells laughed each time he felt the warm water (Maw said that meant he was probably peeing). Hindsight, I have read some disgusting facts about hot tubs and there were way too many strangers sharing that water.
I was so anxious watching Millie and Wells play on the water structures. The bigger kids, water buckets spilling over, slippery stair steps – it was enough to give me a heart attack but both kids loved the adventure and independence. There were basketball hoops and balls and we enjoyed passing the basketball through the water to each other. Millie and Wells were not fond of the waves in the wave pool but that didn’t surprise me because both my kids have a tendency to get motion sick, like me. I remember feeling motion sick as a child treading water in the wave pool at Wyandotte Lake, I’m aging myself; it’s Zoombeezi Bay now.
After two hours of playing, their lips were turning a light purple hue and their toes and fingers were shriveled. We went back to the room, changed into dry clothes, and went down the the arcade to play some games. Chris loaded money onto an arcade card and the kids went wild. Millie and Wells got to play a game together where they sat in a firetruck and used squirt guns as hoses to put out fires. They also got to ride on little motorcycles and race. The tickets they compiled were enough to get some smarties, a package of car stickers, and a mermaid pen (it was the last mermaid pen in the bunch and Millie was very excited about it).
As we walked upstairs to head back to our room, we heard music coming from the lobby. We stopped in and joined a nighttime dance party! It was so funny, Wells walked straight into a group of kids and started dancing without a care. When the dancing was over, Wells decided he was going to get on the stage. I chased him down and in the meantime, some boys with bubble wands were putting their bubbles over Mills head. She was showing some annoyance with getting soapy and Wells saw this and decided he didn’t like what was happening. He grabbed Millie’s hand and walked her away from the boys after giving them a serious, baby babbling talking-to.
Before we went back to our room, we let the kids get rock candy at the candy store. Of course Wells chose blue and Millie, pink. The store looked like Willy Wonka’s factory. We walked back to our room and ate a late night snack before bed; potato chips and Oreos. The bed felt sandy from all the crumbs that landed on the blankets. Mill chose to sleep with her dad and Wells slept with me. He dream-fed basically all night so my sleep sucked and morning came early. Bananas, grapes, and vegan sausage sandwiches were for breakfast.
Checkout was at 11am. Chris packed up our things; our singular suitcase full of the clothes we no longer needed. He packed a tote bag with our water park needs and clothes to change into after. (This was the only part of the trip that I did not enjoy because of the hustle and bustle of trying to check out in time. Not to mention, changing ourselves and the kids at the water park was chaotic.) If we do this again, we will not go to the water park on the day we leave.
The kids were just as excited to be at the water park the second time as they were the first. We met a nice family in the hot springs that reminded me of the Newport Aquarium only thirty minutes away from the resort. While the kids ate lunch on beach chairs, I bought tickets for Wells to see some sharks. Changing the kids from their wet bathing suits into dry clothes in the damp, resort bathroom was not fun. Also, because it was going to be freezing outside, we were changing into sweaters in the heat of the humid park and that felt gross. Walking out into the thirty degree weather actually felt refreshing.
Both kids fell asleep in the car on the way to the aquarium. Finding parking in a new place is always stressful for Chris and me but once we did, we woke up the kids, and made our way across the Levee. We found the aquarium and I was irritated before we walked through the doors; the listed operating hours differed from the automated machine I listened to before I bought our tickets. We had less time to explore the aquarium than I expected and when I spoke to the ticket office about the discrepancy, they admitted that they had not updated their automated service and the manager refunded us half our money back for the inconvenience. I was impressed by the customer service and was ready to have a good time with Millie and Wells at the aquarium.
The fish in this aquarium were unlike any we’d ever seen; different species of seahorses, prehistoric-air-breathing fish, stingray sharks, etc. The most breathtaking moment happened when a giant sea turtle made eye contact with Wells and started swimming to him. We were the only ones in that exhibit and it was magical. We were lucky to catch this moment on video. Months later, Wells still watches the sea turtle video with amazement.
One of the exhibits had a coloring station where you would color a fish, scan it into a machine, and your colored fish would show up, swimming on a digital aquarium screen. It was really cool! I colored a fish with eighth notes but the technology mirrored the image and the note heads were backward (that still bugs me a month later). A little girl at the penguin exhibit asked Millie her name, and Mill proudly stated her full name and her age. She held up the correct number of fingers and then she asked the girl her name. The little girl introduced herself as Ry-Ry. Wells put his hand on his chest and very clearly said, “Wells”. I looked over at Chris and started to tear up. Not only did he understand to introduce himself in that social setting, but he did it with such clarity and confidence. My whole heart welled with pride.
Both babes slept the two hour car ride home. I was exhausted from the trip but managed to prepare and eat dinner, bathe the kids, unpack the over night bag, and crawl into bed by ten. It was difficult waking up for work the next morning but the trip happening mid-week made the weekend come quick. Millie was so excited to call the grandparents and tell them all about her experience. She wants them all to be with us the next time we go to Great Wolf Lodge. A quick vacation with lasting memories.
I don’t know why our brains can’t remember the details of the good stuff. Actually, I do. I learned about it at a professional development meeting on trauma and stress. I hate staying late at work and being late to Millie, Wells, and Mawmaw. Alas, I did pick up one thing from the seemingly useless meeting; our brains remember the traumatic memories to best protect us and because our brain doesn’t need to protect us from the good stuff, it doesn’t retain it. What a load of crap.
Tonight’s good stuff is laying on the couch, way too late, on the Eve of a snow day. Wells is next to me, dream feeding, peacefully. His foot isn’t any bigger than my hand. His little body is so soft and squishable. I feel his legs and arms lay over mine. I listen to him breathe. I hold his hand and rub his back all while thinking about his future, who he will become, and how I fit in it. I pray over him and kiss him and tell him I love him.
As much as I want it to be, this blog post will never be the real thing. When I read this again, it’ll be because I’m missing my babies. I’m sad for future me. I’m sad because I know that I will want this time back. But for now, I sign off to live in the moment I have, no matter how fleeting it is, to hold my baby while he sleeps because my children are the greatest blessings of my entire life.
A cognitive speech delay refers to the condition of children whose speech function is significantly below the expected average for their age.
Wells was such a ham at the pediatricians office for his 18 month appointment. He proudly walked onto the scale, waved at every nurse in the hallway, and peeked his head into another room to say, “hi” to the doctor. As we waited for our visit, I was given a behavior and intellect survey. I quickly became aware of what the average 18 month old could do and what my son could not. “Does your child put two words together to make a short phrase?” We clap when Wells says half of a word correctly. “Does your child say 50+ words?” Does “eee” count as a word? I looked over at Wells, sitting with his ankles crossed on the table, and my eyes begin to well.
His doctor reassured me that because he’s male and has a talkative older sister, we shouldn’t be worried. “It just hasn’t clicked for him yet.” I asked about a speech therapist however, that was not an option for Wells because he had no other signs of delayed development. She said, “He’s content; it’ll come. Model speech. Incorporate more sign language and give him choices.” I was told at his two year appointment we will reevaluate, which put a timeline on us, and that pressure was heavy.
Wells’ hearing has been checked. When he was born he didn’t pass his first hearing exam in the hospital; he had womb fluid in his ears. Before we left the hospital, Wells passed his hearing test. At eighteen months, Wells understands what we ask of him; cognitively, he is fine. Wells has great social skills; he plays with his sister and other children. Wells might not speak words yet but he communicates through pointing, body language, sign language, and grunts. Every adult is, “mama” right now (which absolutely destroys Chris because he still doesn’t say, “dada”). When Wells would call Chris, “mama” Chris would respond, “No. Say, ‘dada. Da-da’”. After doing some research, we learned saying, “no” to his vocalizations could actually hinder him from attempting to speak.
Following some advice from my best friend, Lindsey, I began following some vocal pathologists and speech therapists on social media. Watching their stories and reading their posts made me feel like we weren’t alone with Wells’ speech delay. A particular post caught my eye that read, Early Intervention; not “wait” and see, check and see. The post was about support for children 18-36 months old with cognitive delays. Our pediatrician said that insurance would not cover speech therapy until he turned two however, this program was state funded as long as the child qualified. I decided to fill out the questionnaire and I received a phone call within a week to schedule a virtual evaluation.
For the virtual evaluation, Millie got doughnuts with Mawmaw so Chris and my full attention could be on Wells. Signed into the Zoom meet was the Help Me Grow service coordinator, OT (occupational therapist), and a speech pathologist. Chris held the phone and I played on the floor with Wells with the toys that HMG recommended; blocks, Little People, books, Melissa and Doug knob puzzles, balls, etc. The therapists asked questions about his daily routine and his skills. We were all so impressed with how much Wells was showing off. He acknowledged the specialists, he stacked blocks 12 high, he identified colors and body parts, he jumped like a frog, and made animal sounds!
The specialists were using the Bell Curve to determine if he would qualify for state-funded therapy. He scored extremely high in the motor skills and comprehension categories. Once his speech score was included, it dropped his score significantly but not enough to qualify for state funded help. I was devastated. Without hesitation, I began advocating for Wells and the help that I knew he needed. I mentioned that we had taken advice from a speech therapist that I work with and that we were not seeing improvement in his speech. I reiterated the frustration we feel, especially Wells, when he can’t communicate his needs. Thankfully, the speech pathologist on the video conference heard me. She said, “My clinical opinion trumps the Bell Curve score. It is my opinion that Wells needs intervention in expressive speech and I will take him on my case load.”
The next step was to meet with HMG to compose an IFSP (Individual Family Service Plan). An IFSP is provided based on the concerns of the family and the child’s needs. The plan must include: an assessment of a child’s present levels of development, a statement of goals, support services that will be put in place to achieve those goals, date services will begin, and the identification of the service coordinator. A re-evaluation is done every 6 months. Wells’ goals were to expand his expressive vocabulary and to use family names ie. Mia, Dada, Papa etc.
We were able to schedule in-home meetings, twice a month. Wells’ speech therapist’s name is Katie and she is extremely kind. We meet around Wells’ nap time so he’s not been in the best of moods however, she lets him draw in her planner and he loves that. She listens to Wells while he plays and gives Chris and I ways to better communicate with him. Our first assignment was, “imitation”; getting Wells to copy the faces we made and then asking him to repeat a word. We also were encouraged to sing with him and let him fill in the words. Katie also told us to stop saying, “Wells say …” and since we’ve stopped putting him on the spot, he’s picked up more words. Because Wells is so active and advanced in his motor skills, Ms. Katie recommend we add repetitive words to movement like, “One, two, three, jump!” Verbal routines and elimination ie. “ready, set, go” multiple times then “ready, set” and he should fill in the blank with “go”. After a month of speech therapy, Wells seems more confident in trying new words.
Millie and Wells met a little girl while watching the penguins swim at the Newport Aquarium. Millie introduced herself right away, full name and age. The little girl introduced herself. Wells puts both hands on his chest and said, “Wells”. I got tears in my eyes; I was so proud of him. He knew what the girls were saying and without being prompted, he joined the conversation. He also has started babbling. It’s not often but it is encouraging because he is using his tongue, “dee di do do da da”. When he uses his little voice he has the sweetest smile on his face – he knows it pleases us.
Here is a running list of Wells’ said words (not all consonants are there but he attempts) :
One, Two, Three, Four, Five
Everyone has an opinion on Wells’ delay and the resources we are giving him. I’ve heard, “Once he starts talking you won’t get him to shut up!” This comment was not helpful. When we are dealing with Wells completely melting down when he can’t communicate his needs, his verbal skills when he’s older does not help him now. “Boys are late talkers, he’s fine.” My son is more than fine. He is beautiful, healthy, and intelligent. He is getting help for a diagnosed delay. “It could be worse.” Chris and I are very blessed and we are aware that Wells’ speech delay is a mild impairment compared to other children who have more severe delays. We also know that this is our reality and we are trying our best to provide Wells with the best possible resources to be successful with speech and will continue to aide him with any other aspect of life.