28 February 2016

Easing Into a Family of Seven

It seemed this week we started to ease into a feasible schedule and routine with our new baby. For me the most challenging part is picking up kids from school and after school activities like piano and physical therapy. Phillip will start soccer the end of March so that will come in a few weeks.

Monday morning I earned a gold medal because we got to Josie's two-week appointment on time at 9 am. I will admit to feeling rather exhausted afterwards. Josie tipped the scale at 8 lbs 4 oz, one ounce over her birth weight! Good job little one. She looks very healthy according to Dr Shaw. Yay. Right before we left I got a phone call from Dr Georgopoulos assistant from Denver Orthopedics. She briefly reviewed the MRI, once again confirming Amelia's diagnosis for the third time. Robin said that Amelia is at the beginning of the disease cycle, not the middle or end as we hoped. This makes surgical intervention a necessity, the surgery performed is to break the femur head, reshape it, and pin it back into the hip to allow better blood circulation. Mia would be in a torso cast for 6-8 weeks. I went to Josie's appointment feeling defeated and hurting for our little Amelia. After Shaw finished with Josie she asked about Amelia. I told her what the Dr was saying, she got a defiant look on her face and told me her son also had Perthes. She decided to not accept any surgical interventions for her son since the surgeries did not change the ultimate outcome of a hip replacement in his 20's. He was on crutches for 18 months, did physical therapy, and took Aleve and melatonin for the duration. After the disease ran it's course he was left with his left foot a bit rotated in and an inch leg discrepancy. He is now playing basketball and running around. She said it was a hard, angry 18 months of his life, but they got through it. It was refreshing and an answer to prayer to hear her opinion. I am not saying we will pursue this course but it gives us more information to make the best decision we can. One factor that will affect our decision is the severity of the disease in her hip.

For FHE we went to Math night at Amelia's school. She was so excited to have us all visit her school. We started in her homeroom with math grids, using blocks to solve funny sentences. Mrs Plant held Josie most of the time we were in her classroom. Some of the other activities included tangrams, making prisms, estimation, a photo booth, minecraft, and other math based games. We got a kick out of Everett's enthusiasm over doing Math. Evelyn naturally gravitated toward the classroom sinks, she could not help but run the water. Silly goose. We ended the evening with a treat from Sonic.

Evelyn started napping with strange objects this week. Her favorites are apple sauce packets, tubes of kool aid powder, her favorite shoe, socks on her hands, and even a tooth brush. She has taken to pointing at things with her middle finger as well. I tried to get a photo, the last one above, but she is too fast for me. She poured herself a bowl of Parmesan cheese for dinner because she was not a fan of the soup I made. You may ask if she ate it...yep! She did. Evelyn also enjoys snacking on strawberry milk powder straight from the canister using the scoop. Two year olds make me laugh.

The most stressful event of the week was Amelia's first physical therapy appointment on Tuesday. Sister Swain could not watch Kaylee that day so I ended up with 6 kids. We walked into the hospital, Kelly said she knew we were coming because of all the whooping and hollering. That was a bit embarrassing. We sat in the lobby for an hour. I nursed the baby while the kids ran around amusing themselves and eating snacks. I tried my best from the seat to keep the kids near by and out of folk's way. Amelia met with Dr Karl alone since I did not want the kids in the cool therapy room. Dr Karl needed me to see the exercises to do at home so at the end we all went in. Course, Phillip immediately whoops and runs to the trampoline grabbing bell weights along his path. Dr Karl was brillant telling the kids they could only stay on the areas of the rug light with sunshine. I stood there nursing while Karl went through the exercises. I had him do it three times, the last time I took a video in case I forgot. Meanwhile the kids dsicovered that sun was not only touching the carpet but also cool equipment. Yikes, we left as soon as possible with the room still intact. I refuse to take her again with 6 kids in tow! Sister Shields helped me find someone available to take Amelia 2-3 times per week. I am grateful that Sister Elliot will help me out for the next 6 weeks. She is a true angel.

Kindergarten celebrated Dr Seuss this past week with fun activities every day. He got to wear mismatching clothes, silly hats, blue/red, and PJs to school. Almost each day he prayed that Dr Seuss would have the best birthday ever. He missed Friday's celebration because of a short bout with stomach flu. He chucked all on the living room carpet while telling me he needed a bowl to barf in. Gracious! Just get a bowl. Justin, yes, you read that right...Justin cleaned up the barf and even busted out the carpet cleaner to sanitize the carpet. Around 2:30 that night Everett crawled into bed with us. He laid down then barfed all over our pillows, sheets, and comforter. Justin cleaned him off in the shower while I tracked down some sheets and a blanket so we could finish out the night in our own bed. Everett went back to his clean bed for the rest of the night. We discovered the next night that he barfed again in his own bed and just went to sleep in it. Gross. Friday both boys held down the couch and watched movies half of the day. Phillip was thrilled when Josie fell asleep on his lap in spite of his wiggles. He sure loves her.

I installed the cool new swing the kids got for Christmas. We are having spring-like weather. Makes me worry to see all the tree bud begin to swell. In my experience here when the plants begin to bloom this early they get killed off because of spring snow storms. Still, the 65 degree weather yesterday was heavenly. The kids played outside most of the day on the saucer swing. I hung up the rope ladder for extra loads of fun. My kids are too chicken to climb up the ladder and enjoy the tree. We made an excursion to Cabela's for a new lawn chair. Now I can nurse outside while the kids play.

Josie looked adorable for her first day at church this morning. She hid out in her car seat the entire time so nobody got a peek at her cute dress. I included a couple photos to prove she did indeed look adorable. I am working on Thank You notes and sending out birth announcements. I ordered a bunch of prints late last week. Half of the photos were up on our walls before dinner time the day the boxes arrived. Ahhhh! So many pretty choices.

22 February 2016

Legg-Calve Perthes Disease

I finally heard back from Dr Shaw's nurse about the hip x-ray results taken on the 8th of February. The nurse called a little while after my mom left for the long drive back to Utah (the 12th). She explained over the phone that Amelia was initially diagnosed with Perthes Disease, one of those rare and mysterious words no parent ever wants to hear. She was pretty vague about what it was, in fact she told me to look it up on google. The nurse coordinated with several Children's hospitals around the Denver area. One required an MRI first, 6 week wait, and lots of preliminary blood work. Another had similar requirements. The nurse finally spoke with Denver Children's hospital on Monday and was happy they had no stringent intake process. She had me call them on Tuesday to schedule an intake appointment.

Justin and I felt devastated about our sweet girl having a disease like Perthes. The basic information about the disease is:

It is a childhood hip disorder initiated by a disruption of blood flow to the ball of the femur called the femoral head. Due to the lack of blood flow, the bone dies and stops growing. Over time, healing occurs by new blood vessels infiltrating the dead bone and removing the necrotic bone which leads to a loss of bone mass and a weakening of the femoral head. The bone loss leads to some degree of collapse and deformity of the femoral head and sometimes secondary changes to the shape of the hip socket. 
Common symptoms include hip, knee (hip pathology can refer pain to a normal knee), or groin pain, exacerbated by hip/leg movement, especially internal hip rotation (twisting the leg toward the center of the body). There is reduced range of motion, particularly in abduction and internal rotation, and the patient presents with a limp. Pain is usually mild. There may be atrophy of thigh muscles from disuse and an inequality of leg length. In some cases, some activity can cause severe irritation or inflammation of the damaged area including standing, walking, running, kneeling, or stooping repeatedly for an extended period of time. In cases exhibiting severe femoral osteonecrosis, pain is usually a chronic, throbbing sensation exacerbated by activity.
The first signs are complaints of soreness from the child, which are often dismissed as growing pains, and limping or other guarding of the joint, particularly when tired. The pain is usually in the hip, but can also be felt in the knee ('referred pain'). In some cases, pain is felt in the unaffected hip and leg, due to the child favoring the injured side and placing the majority of their weight on the "good" leg. It is predominantly a disease of boys (4:1 ratio). Perthes is generally diagnosed between 5 and 12 years of age, although it has been diagnosed as early as 18 months. Typically the disease is only seen in one hip, but bilateral Perthes is seen in about 10% of children diagnosed.
(Thanks to WIKIPEDIA)

The orthopedic department had one cancellation for the next day at 10:30. I went ahead and scheduled the appointment. Justin was able to get the day off and take Amelia down for the appointment. He tried to Skype me in, but it was too chaotic. He took copious notes at the time. Amelia was scheduled for an MRI to confirm Perthes. Dye was injected to highlight the hip and femoral head damage. We have yet to see the MRI, an X-ray was sent home with Justin. As you can see the right side of the x-ray shows her left side. The femoral head is no longer rounded like the right side. The Dr is supposed to call tomorrow to review the MRI and answer further questions we may have. At this point the main goal is to reduce her pain and establish a baseline to compare future disease progression. She will also start some physical therapy to help keep her retain abduction movement of her left leg (legs closed then pressed open while in a seated position). The gym has abduction machines to work out on. She is also taking Aleve twice a day to manage her pain. 

Some questions we have are:
Is the disease progressive?
Is it hereditary? Is that why my right leg is shorter?
What point in the disease cycle is Amelia in?
Will she have to be in traction (a horrid looking device that keeps her legs at a 45 degree angle)?
What are the chances she will have surgery and/or a hip replacement?

I am appreciative of the many family and friends who called or messaged support this week. As usual my stoic side is taking a stand. I worry since I have not cried (yet). Makes me feel like a bad, abnormal mother because I rarely cry. In my mind there is nothing we can do to change the diagnosis. It is better to be strong and help teach Amelia patience and love throughout this process. As expected Amelia is acting out at home, hitting, yelling at her brothers, refusing to do her homework, and walking around with a thunderstorm over her head at home. How do you teach a 9 year old to manage so many feelings of loss and sadness? We all feel a degree of loss. No more ballet, very limited physical activity, even bike riding was quite painful the other day. She just cried and cried when even her bike seemed like a lost dream. Tears your heart up. The good news is that we will meet our out-of-pocket max this year with a birth, Perthes disease, and Josie's needs (MRI, hospital stay, and EEG). What elective surgeries can we get taken care of this year? LOL. 

Justin and Amelia got to spend a couple hours at the Discovery Museum. Justin sent me several pics of them playing. Justin got a kick out of the whoppie cushion wall.  Amelia loved making a rocket and a robot called Frankenbot with Justin. She loved the bubble room. Another center was the energy room, she made a balloon fly up and down using ball's kenetic motion as energy. As seen above painting the buffalo butt was quite hilarious. I hope that was quite memorable for Amelia. They went back to the hospital later for the MRI at 4:45. Amelia got to watch Barbie and the Diamond Castle movie to help her stay still. After the MRI they went to Del Taco for dinner. Amelia drank an entire water bottle and drink, then downed 4 tacos, and two cookies. Those who know our tiny, bird eater of a girl will be impressed. She slept most of the boring drive home. We worried about them most of the day. They finally got home around 9 pm after a very long day. Since then we've had many forced snuggles when she starts acting out, after a while of snuggles she will just melt into me as her emotions leave.  

This morning I spoke with Robin from Denver Children's, she said that Dr Georgopoulos wants to meet with us in person in 6 weeks to discuss Amelia's treatment. She is in the early stages of the disease which is worse for her because Amelia is older than most kids who have the disease. Robin mentioned the most common surgery is to break the femoral head and bend it to better fit into the hip socket, a very invasive surgery. Treated like a bad break with cast and such. A while later I met with our family doctor and discovered that her son also has Perthes Disease. He was diagnosed at 8 as well. They decided to persue a non-invasive route with no surgery etc since the surgeries would not avoid a future hip replacement. They treated the disease with pain relievers, melatonin (to help him sleep), no physical exercise for over a year, crutches, and physical therapy. Her son is now 11 and playing basketball. His right foot is twisted inward a bit due to the bone healing itself crookedly. I was so glad to hear her point of view. Just another opinion to consider. I did not consider not treating the disease because we are so indoctrinated that surgery and medicine are the only options. We are better armed with questions and other alternatives. 

21 February 2016

Valentine's Day

Josie got her first bath Thursday night. Like most newborns she was not a fan of getting half her body warm and the top half cold. I should have filled the sink full but was afraid the kids would make me lose grip of her. The kids had a blast pouring cups of water on her. Everett decided the computer was more interesting than dousing a baby with water. Pouring cups of water is right up Evelyn's alley. After Amelia introduced Evelyn to tea parties a couple weeks ago the kid cannot get enough. All I have to do is follow the sound of running water to locate her. She has stationed a tea cup, saucer, tea pot, spoon, and a large cup at every sink in our house. I will not be surprised if our water bill doubles this month. She often leaves the faucet running. Our house also has random puddles of water/liquid from spills as she carries around her tea cups of water. I am glad she is staying well-hydrated.

Amelia is turning into my afternoon baby holder. She loves to sit and hold Josie as long as possible after school. She calls her Princess Bright Eyes. Amelia is convinced that Josie's favorite position is upright on her shoulder. I love it! The kids had a fun day off on Friday. We started the day with photos of all the kids together. Michelle Rognon came over to assist me. I used my new barn wood wall for the occasion. The kids did pretty well considering. I was lucky to capture Evelyn and Amelia sitting nicely and smiling while I got everything ready. Good thing my camera was ready. Right after the kids got dressed and we visited Justin's work. All his coworkers were pretty excited for the diversion we provided. Little Josie was quite the star. Phillip holed up in Justin's office. He made a couple phone calls (no kidding), listened to a voice mail or two, accounted on the 10-key, and made Justin a collage of windows on his door, since he needed more windows in his enclosed office. I think the kids used half a roll of calculator paper as they made long and complicated calculations. Everett was especially impressed with the 10-key. He made about 10 long receipts. Phillip made the longest receipt, his feat was tearing the strip of paper up on his head. Yah, know! Boys. Amelia made Justin a Valentine drawing on his office white board. We kept our yearly tradition of lunch at Pizza Hut buffet for lunch. It was very busy when we arrived, Everett about had a meltdown because he had nothing to drink. We got that settled before critical meltdown. The kids loved filling their plates on their own from the buffets. Everett ran out of sprite at one point. He tracked down the waitress, patiently waited his turn to talk to her. He grabbed both her hands and batted his brown eyes: "may I please have a refill of cold sprite?" What a ham. She brought him a sprite with a twinkle in her eyes. He may have made her day!

Sunday we enjoyed Valentine's day. While everyone else was at church I cleaned up a bit, spread out Valentine goodies, and put dinner in the crock pot. The kids exploded through the door at 1:10 ready for mac'n cheese. It took them a moment (or two) to discover their goodies. We got to FaceTime with several folks throughout the day. Justin brought home a bouquet of lovely yellow roses to brighten our day (on Saturday of course). Amelia even got a cute little rose bush from Justin. Our day was very low key, soaking in our family togetherness. Everett was my sweet Valentine boy all day. I loved all the kisses, hugs, and smiles throughout the day.

Monday was also a holiday for President's day. I can't rightly remember what we did. Justin may have picked up his snowblower and worked on the carburetor. By the end of the day everyone was over the top crabby. Everett lost all electronic privileges, Amelia was in time out for screaming at everyone like a banshee and hitting and such, Phillip was busy pestering and ignoring the parental figures, Evelyn was running around naked with her cups of water, Josie was unsettled with all the loud noise. We had to put everyone out of misery with an early bedtime. Even FHE was a terrible mess. Someone is always out of sorts, usually Everett because he is not in charge of the game or Amelia because no one listens to her. Justin went to bed at 9 wondering how I could stay home all the time and not go crazy. I wonder that myself.

Everett was a perfect angel the next day with his electronic privileges revoked. He needs that more often. I am finally feeling human enough to deal with the loss of such a privilege. Jane McNally is picking up Everett from school for the next 2 weeks. Such a blessing to have my kids brought home to me. Josie and I are struggling to find a schedule that works with the demands of a larger family. I've never had a newborn that sleeps as much or eats as long as Josie. Her current schedule is nursing at 7:45, noon, 4:00, 8:00, midnight, and 5 am. I worry she is not getting enough since I usually nurse on a 3 hour schedule. this 4 hour stretch is new to me. She eats is awake for up to an hour, naps for 3 hours, then eats (burps, spits up, does her business, eats again, burps, spits up, and nurses). She is very content when she is full and free of burps. I am trying more of a baby-led nursing regime this time instead of the strict 2.5-3 hour schedule, she won't wake up before 3.5 hours anyhow.

Evelyn likes to eat her lunch in the antique high chair while I nurse Josie. She can get in, plop down her plate, eat and get out all by herself. I enjoy interacting with her while she eats! That girl is silly and funny. We are down to less than an hour of electronics each day, it is so nice to see her playing instead of nose pointed down to my old iPhone.

I made a large batch of play dough last Sunday. The kids play with it off and on as their fancy directs. Evelyn and Everett played with it for an hour on Friday. Everett slept in until 10:00 am, ate breakfast then played with dough until lunch time. The kids were delighted to use my rolling pin, cookie cutters, butter knives, and tooth picks to make shapes. Saturday the older three played Alien Mouse with the play dough. Amelia made a nest and each kid made their own mouse. Hearing them play just delighted my sense of humor. Justin took the kids to Walmart and Cabela's Saturday afternoon to get them out of the house. The kids spent their money on a bag each of candy and a blind bag. Blind bags are sort of like mystery toys in a mylar bag, Amelia got 2  Princess Pet bags and scored a peacock and deer, Phillip chose a TMNT bag and won a Mikey figure, Everett got a minions bag. They happily played with their new toys the rest of the day. Josie celebrated her 2 weeks old mark. Slow down already.