Tag: family

Baby

IFAP cont.

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IFAP cont.

We found out about my compromised X chromosome when I was already pregnant with our third. We chose not to find out the gender and I prayed it was a girl; a girl who wasn’t a carrier. 9 months later, it’s a boy, Crosby, and he has IFAP.

Two weeks after Crosby was born, Wells had to go under anesthesia to remove his eye tubes (good for nothing) and for the corneal specialist to take a closer look at his eyes. After the procedure, the doctors informed us that there was no corneal scarring and no signs of early glaucoma – huge relief. There was eyelid inflammation and of course, the blockage of oil ducts. His dry eye is chronic; the flourometholone and erythromycin are helping with that. Overall, the ophthalmologist and corneal specialist agree that the treatment plan he’s currently on is definitely the best thing moving forward.

The summer time is the absolute worst for his dry, cracked feet. Flip-flops, chlorine, no socks – it was creating many deep cracks that sometimes bled. The Urea cream that we were prescribed (that we found cheaper on Amazon) wasn’t absorbing into his heels. Thankfully, my in-laws’ neighbor is a doctor and he was headed up to do some research at the Mayo Clinic. He offered to pull some information about IFAP for us which turned out to be incredibly helpful. He brought back a stack of papers – all related to, or resources for IFAP syndrome. I read through case studies that I hadn’t seen before. It was surreal reading about other boys with the exact condition as Wells. Three different children were treated with a medicine, Acitretin (10mg per day) and saw improvement in skin features. I reached out to the dermatologist right away.

The dermatologist said that Acitretin could smooth the rough texture of his skin and help with the cracking on the feet. She did not expect hair growth from the medication (all of the case studies from the Mayo Clinic said nothing helped the Alopecia). She explained that Acitretin is not a medication without side effects (skin drying out, possible growth abnormalities, high liver enzymes). There would be regular monitoring of blood work and x rays to safely have him on the medication.

We learned that Acitretin is usually used in treating psoriasis. Women cannot take this medication because it can cause reproductive issues. We read about people who have used and currently use this medication and weighed out the pros and cons. Wells can stop taking this medicine cold-turkey if we notice any negative side effects, it’s non addictive – it’s a vitamin A derivative, and you can start at a very low dosage and still see results. Some scary cons were lack of growth (already an issue if you have IFAP), chapped (to the point of cracking) lips, it’s only offered in capsulated form, and possible abnormal blood results. After careful consideration, we decided to try Wells on the Acitretin.

Wells’ preliminary blood results came back with elevated triglycerides. The dermatologist called me and asked if we fasted before the blood draw. I was like, “Nope. He ate TimBits.” My bad. Even still, we were given the green light to start the medicine. The Acitretin only came in capsule form so we were encouraged to give it to him by opening the pill and pouring the medicine onto something with high fat intake. We decided on whipped cream. Wells began taking the Acitretin and within two days, his skin felt smoother than it had ever been. He did get a gnarly sore on the corner of his mouth because his lips were so incredibly dry from taking this medication. It hurt him to open his mouth too wide especially when he was eating. We informed the dermatologist and she recommended we try taking the medicine every other day. I noticed that the daily vitamin that we were giving him also vitamin A, 100% of his daily value. We started giving Wells the Acitretin once every three days and the balance was perfect.

Crosby has the sandpaper textured arms and legs. His cheeks aren’t as bad as Wells’ were but they’re rough, too. He has two large, bald patches on the top of his head. His eyes water when we take him outside. His nose constantly runs. Until Crosby’s feet crack to the point of discomfort, he wont see the dermatologist. It’s a waiting game to see how many side effects he’ll have of this awful syndrome.

I was let down at our annual, geneticist appointment. Last year, I requested from the doctors to find us a support group for IFAP (didn’t happen). In fact, the doctor said I was the specialist on IFAP now and I know more about the syndrome than him, the doctor (real reassuring considering I don’t know a whole lot). We were told that the type of Alopecia the boys have is called, Atrichia, a rare, recessive form of alopecia where people are born with hair that falls out and is never replaced. Wells has a patch of hair like this and most of Crosby’s head has no hair. The rosemary oil we’ve been buying and putting on their scalp does no good; the hair loss is irreversible.

Nationwide Children’s hospital hosted a Rare Disease Day on March 1st, that my mother-in-law and I attended for knowledge about participation in research studies for the boys. Organizations like NORD and A Kid Again set up booths to spread awareness of their services. The MC spoke about rare diseases being embodied by the zebra; when you hear hooves, you think horses however, sometimes hooves can mean zebras!

The keynote speaker was a doctor and patient who discovered, and named, a rare disease. They were incredibly transparent about the research/patient experience (no one wants their children to feel like lab rats). We were informed of the website clinicaltrials.gov where we’ve already found studies both active and completed about parts of IFAP. Ichthyosis is really being researched in France.

At the end of the session, the MC asked for everyone in attendance to take a group photo. By chance, the doctor who spoke stood next to me! I asked her, “What should I do if our doctors aren’t looking into research studies for us? I know more about our rare disease than the doctors do.” She explained to me that it’s the doctors who will be able to find the best clinical studies for my boys and that I should reach out to them and let them know that I am interested in research studies even if it’s done by a fellow and not a “famous” doctor. I told her that some research is being done in France for parts of IFAP syndrome to which she said, “Sounds like that could be a nice vacation. I have patients in France. Try to contact the doctor facilitating the protocol and see if they know anyone in the U.S. also doing this research.”

The breakout session we attended was about participation in research studies. It was suggested to contact the pharmaceutical company of the medication the boys are on to see if there’s research studies we can take part in. Researchmatch was another application that was mentioned to connect patients to clinical studies.

I learned that there is a Rare Disease Advisory Counsel that I might try to join when I get some free time (lol free time, what is that?) NCH has a program called “Connecting families” where families who are newly diagnosed can speak with families who have been through it. It would be incredibly rare for someone to have IFAP but I am definitely interested in potentially helping another family facilitate life with a rare disease. There are also rare disease sibling support groups that I could look into later for Millie.

A week after the Rare Disease event, I was informed that our family qualified for, A Kid Again. It’s a nonprofit organization that offers free, monthly events and activities for families dealing with a life-threatening condition. They handle all the expenses and details, so that families can simply enjoy themselves. I was excited that we were given this opportunity but at the same time I felt bad because my sons have poor enough health to qualify. (I gave that to them, that compromised X chromosome.) The kids don’t age out until they’re twenty so we can experience these fun adventures for a while. I know they’ll be something we all look forward to. We will go to our first outing in April!

Baby

My Baby, My Genes

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My Baby, My Genes

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.

Baby

Wells’ Speech Part 2

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Wells’ Speech Part 2

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.

parenting

Pre K

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Pre K

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.

More as she continues the school year!

Baby

Summer of 22

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Summer of 22

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.

lifestyle

But I Get Up Again

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But I Get Up Again

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 so scrunched.

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.

Baby

Weekend Getaway

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Weekend Getaway

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.

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We Forget

by motheringmillieLeave a Comment on We Forget
We Forget

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.

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Speech Delay

by motheringmillieLeave a Comment on Speech Delay
Speech Delay

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) :

  • Mama
  • Mawmaw
  • Gam
  • Eat
  • Couch
  • Hi
  • Bye
  • Bean
  • Corn
  • Drink
  • Wells
  • Bath
  • Mickey
  • Blue
  • Red
  • Yellow
  • Pink
  • Bluey
  • One, Two, Three, Four, Five
  • Green
  • Eyes
  • Teeth
  • Nose
  • Mouth
  • Toes
  • Read
  • Run
  • Mine
  • No
  • Beep
  • Warm
  • Cold
  • Hot
  • Home
  • Mouse
  • Up
  • Down
  • Out
  • Yeah
  • Clean
  • Swing
  • Please
  • Slide
  • Phone
  • Crying
  • Quack
  • Meow
  • Car
  • Yum
  • Cream
  • Candy
  • Ice
  • Ready

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.

lifestyle

Fall Fun 21

by motheringmillieLeave a Comment on Fall Fun 21
Fall Fun 21

Before I can start writing about winter (it’s December 27th) here is a blog about our Fall.

Millie started ballet classes through Ballet Met. She is a “Mini Mover”, a class for 3 and 4 year olds. Maw, Mill, and I went to Opening Night, a store that sells dance attire, to try on and purchase her dance uniform; a pink cap sleeved leotard, a pink skirt, white socks, and white ballet shoes. (We got a sequin dance bag and a pink scrunchie, too.) While a sales woman was helping Millie try on ballet slippers, Mill was talking her ear off about the catfish in our backyard. The owner heard Mill talking and peaked out the dressing rooms, “I just had to hear who was saying that!” I was mortified. She must have thought we were such hillbillies. We found out that her feet are two different sizes; a half size difference. Millie leapt around the room when she had on her full uniform on and she was glowing.

1 day a week Millie attends dance class. There are 6 students total, all girls. Her teachers name is Miss. Sarah and they have a pianist that plays their rehearsal music. I asked Millie what the piano players name was and very matter of factly she told me, “Issac”. Come to find out his name is not Issac at all. It’s Gabe. The students are encouraged to wear masks during class. I thought this would be an issue for Millie but she never fusses about it and keeps it on. A month into classes, I asked Miss. Sarah how Mill was doing to which she responded, “Mia has a lot of great ideas.” This told me that Millie is probably trying to teach the class herself. She likes having “Mommy and Millie” time together after class when we get doughnuts or run errands. This ballet season has been really special.

We walked over to the high school to attend a Friday night football game. This was Wells’ first football game. Members of the OSU marching band who were GC alumni performed at half time. The kids enjoyed the music and clapped when appropriate. Wells wanted to sit independently between Chris and me, instead of on our laps. Once the game started, Wells wanted to be up and moving. He made a loop; down the stairs, under the bleachers, up the stairs, through the bleachers. He did this probably five times and when he’d hit a straight away, he would run. We bought a box of Krispy Kreme doughnuts and snacked on the way home.

Maw took a walk with the kids one fall afternoon and Millie took note of the many houses that were decorated – ours wasn’t one of them. That weekend I took both kids to a farmers market where I pulled them around in a wagon and they got to pick out their favorite pumpkins. Wells loved the mini pumpkins and Millie loved them all. We also got a delicious bag of apples and two bundles of corn for the columns on our front porch. The stalks barely fit in the Jeep; they were probably 7ft long! The kids laughed on the way home as they played with the corn above their heads. They helped decorate the porch and Wells cried when he realized we were leaving the pumpkins outside.

We went took our annual trip to Zassys Vendor Markets and brought Lindsey along with us. The kids tried kettle corn for the first time and they ate it up! Millie flossed to the live music. I bought way too many plants including Millie’s first plant, a pink algaonema that we put on her book shelf. She named the plant, Leafy and sang it Happy Birthday. We came home with way too many kids in the car after picking up Lindsey’s boys.

We took our family Christmas pictures at the end of October. My cousins boyfriend is a great photographer and doesn’t mind coming to us to take pictures. Millie wore a green dress that paired well with mine. The ribbon belt that came with my dress looked perfect around her waist. Wells looked so handsome in his sweater, jeans, and boots. Wells was beyond his nap time so we didn’t get a lot of smiles out of him however, we were able to get a couple shots for the Christmas card. We quickly changed into our Halloween attire and took pictures on the front porch dressed as Wendy, Captain Hook, Tinkerbell, and a lost boy (skunk). We like to get into our costumes and take pictures before Halloween because the night of trick-or-treat is always so busy and the lighting is always terrible. Maw and I tweaked Mills costume and I bought Wells’ from an Etsy shop. Millie was so excited to blow “pixie dust” out of her hands and Wells was excited to throw his slingshot around. Thankfully, the pictures turned out super cute and Christmas cards have been mailed out.

On a rainy night in October, we decided to brave the Circleville Pumpkin Show. Neither Chris or his brother, Uncle Nick (who now lives in Ohio) had ever been to the pumpkin show in Circleville. We parked where we could find a spot, a few blocks away from the festivities, then Chris pushed the double stroller down the city sidewalk as I admired the architectural elements of the quaint houses. Wells wanted to walk around on his own so Chris and I stayed close to him as he explored freely. His smile was contagious; he was so happy to be out on his own. At the end of the night we watched a parade with floats, terrible sounding bands, and tons of beauty pageant queens. A man running for Congress asked Millie her name from his float, she told him and he waved back and used her name; she was on cloud nine.

This was the first year our family has participated in going door to door for Trick or Treat. Millie helped pass out candy her first Halloween. The weather was awful for her second. Her third Trick or Treat was canceled due to COVID. This Halloween, Uncle Nick came over and passed out candy so that we could take the kids to a couple houses. Beggars night in Ohio is the absolute worst, so of course it was raining. Millie dressed as Tinker bell carried her candy bag and an umbrella. Wells, happy to be walking independently, was a drenched skunk by the end of the night. Millie was very polite to the neighbors passing out candy and Wells was mostly interested in their dogs. Most of the candy in their bags was chocolate so we swapped the candy bars out with vegan candies.

Then Millie turned four. (I seriously don’t know how time has moved so quickly. She was wiping her mouth with a napkin the other day and I was like, “How does she know to do that?” I took the day off of work so we could spend her birthday together. We kicked off the day by icing some of the cookies for her birthday party. Then, we went to see a movie and it was the first time Millie had ever been to the movie theater! We had slim pickings on the movie choices but we decided on The Addams Family 2; we watched the first Addams Family the week before so she was excited to see the sequel. We ordered popcorn, pretzel bites, and fries – most of the food was gone before the movie even started. The movie was showing in theater number four, which of course was super special for the newly 4 year old. We had the theater all to ourselves, I guess no one else wanted to see The Addams Family 2 at one o’clock on a weekday. After the opening credits, Millie asked if she could sit on my lap. I reclined the seat back and we snuggled during the entire movie. What more could a mama ask for? It was the best.

The movie ended and per Millie’s request, we got doughnuts at Krispy Kreme. She picked out her favorites from behind the glass and even got a birthday cake doughnut. I let her eat a mini doughnut in the car and after she finished it, she fell fast asleep in her car seat. She had an awesome birthday and couldn’t wait for her cat themed birthday party with her friends and family.

Millie and I watched the musical, Cats together and were both equal parts mesmerized and creeped out. When I asked Mill what party theme she wanted, she was adamant she wanted a Gabby’s Dollhouse party, a children’s Netflix series about cats. Gabby products were difficult to find with Christmas right around the corner so the party was a more generic, “cat” theme. Kitties on the table, cats on the cake, felines in the flowers, and kittens on the plates! I ordered some decor off of Etsy and had the kids decorate kitty faces onto cookies. Millie got so many presents including a ballerina sleeping bag, a backpack full of craft supplies, new clothes, new crocs, and leg warmers.

We saw two spectacular light shows; Conservatory Aglow at the Franklin Park Conservatory and Wildlights at the Columbus Zoo. The conservatory had animal topiaries wrapped in lights and both kids were amazed to see their favorite animals, the elephants (Wells) and giraffes (Millie). They both enjoyed the rainbow arch, walking through a candy land house, and playing on the ropes in the children’s garden. We knew it was time to leave when we caught Millie laying down on the sidewalk by the wooden xylophone. We grabbed free cookies and a craft at the exit. The cookies were eaten on the car ride home and the ornament craft was created that night but destroyed by morning.

We went to the zoo lights with Uncle Nick, his new girlfriend Megan, and our engaged friends Dru and Katey. Both children fell asleep on the way to the zoo. We barely made it through the front gate before Uncle Nick bought them both flashy, light up wands. Santa was there but because of COVID, the kids couldn’t sit on his lap (I’m not sure the kids would’ve wanted to anyway). Millie was not a fan of the elf that introduced her to Santa. They continued to ask her if she was from the North Pole and she did not like that at all. When Santa asked her what she wanted for Christmas she very definitively said, “A Gabbys Dollhouse” to which Santa replied, “That’s a very popular present this year”. Wells signed, “thank you” to Santa and then blew him a kiss. It was the sweetest thing I’d ever seen and Santa said he’d be giving Wells a very special gift under the tree.

On Thanksgiving, we ate biscuits and gravy while watching the Macy’s Thanksgiving Day Parade. Chris accidentally turned off the tv during the Rockettes routine! Millie was excited to see the balloons. We went over to my aunts house and saw my dads side of the family. Then, we went over to my grandmas house and saw my moms side of the family. Facebook marketplace helped us find a Gabbys Dollhouse (triple the retail price) and Chris picked that up while we watched football. After a full day of traveling, we enjoyed a vegan Thanksgiving meal the next day.