Tuesday, May 22, 2012

You're Invited...



Addisyn and Rylyn on May 24 Weekend
...to the Smithville Mom to Mom Sale at the Smithville Royal Canadian Legion across from Tim Horton's this Saturday May 26, 2012 from 8:30am to 12:00pm. Cost for entry is $2 or a non-perishable donation to West Lincoln Community Care.

I will be there vending my distractions from chaos hobbies including cards and gift baskets. My love for shopping and finding a good deal in combination with crafting resulted in the new hobby of creating gift baskets. (My gift cupboard was overflowing). As I am not trying to make money, the baskets are a steal of deal (highest price is $35!) I have never done this before, so my thought is to give it a go. If I am successful I have funding for my maintaining my hobby and if I am not successful, I at least have a lot of gorgeous gifts.

So come on out and say hello to Addisyn and me!

On the chaos front, we have our next appointment with our pediatrician; June 4, midway between now and the scope date. In the meantime, I can call if I have any concerns and am taking Rylyn's temperature and weight each morning. Her infection has cleared with the help of rest and anti-biotics. The infection itself probably made all the unknowns at the time more stressful, because Rylyn was even less like her usual self. We are maintaining gluten in Rylyn's diet until the test as per doctor's orders, however, we have decreased the quantity and are not giving any to her after dinner to make her more comfortable (especially at bedtime). We are enjoying smiles once again. Her eyes lit up at fireworks last night. Once again, thank you for the continuing prayers and support as we journey this road.

Baby Girl Basket, Spiderman Basket, Bath and Body Basket
Most are baby baskets since it is a Mom to Mom sale


Bible Reflections:

Bless the Lord, O my soul; And all that is within me, bless His holy name! Bless the Lord, O my soul, and forget not all His benefits: Who forgives all your iniquities, who heals all your diseases, who redeems your life from destruction, who crowns you with lovingkindness and tender mercies, who satisfies your mouth with good things, so that our youth is renewed like the eagle's. -Psalm 103:1-5

Praise God for good news amidst chaos. Every good and perfect gift comes from You.

Tuesday, May 15, 2012

411 and 20/20 Update

We just returned from our consultation appointment with the GI Clinic at McMaster Children's Hospital. Our Dr. has more credentials than Dr. Derek Shepherd. Rylyn is booked for a gastroscopy (biopsy and visual of the small intestine) for the end of June with follow up 2 weeks later. The gastroscopy will confirm Celiac Disease as well as give more information about the severity. Now it is a waiting game. I feel better but not great. In the medical world this appointment is soon, in mommy world it is light years away.

I am waiting to hear back from our pediatrician what will be happening with her until the appointment. I am suspecting weekly weight checks and monitoring overall health (as Rylyn's immunity is down). The Dr. we saw today said Rylyn's physique and listlessness were classic symptoms, as well as, her long eye lashes. Apparently they are the only thing that keeps growing while the body is on gluten, there is no research to say why this is for sure.

Hindsight really is 20/20. I was looking back and rereading a couple of my posts related to "teething nightmares." Everything make sense now. Teeth pain was probably tummy pain. Apparently, Advil helped. Vomiting was intolerance to gluten. What did we give Rylyn when her teeth were hurting? Crackers, bread, gluten. "Easy-on-the-tummy" foods! :S This is not to say that cutting teeth do not cause pain or irritability in our children. Rylyn had teething pain before she was on solid food. It is to say, it is okay to second guess yourself or third guess yourself.

I am trying not to be too hard on myself. We have never stopped trying to be the best parents we can be. There are three things we did right: 1. We documented concerned behaviour (mainly vomiting). 2. We took Rylyn to the doctor and brought up these concerns. 3. We responded with love. I keep telling myself that God's timing is perfect. We are moving forward.

We have to keep Rylyn on gluten until her testing is done. We are purposefully poisoning and starving her. The small intestine will absorb minimal nutrients as long as she is on gluten. We watched her little tummy bloat from feeding her pasta. This is going to be the most difficult part of the process for us. On the flip side, we are trying to take in all of Addisyn's subtle daily changes. Her eyes looked much bluer than yesterday while sitting in the pediatric courtyard. When I need a smile, innocent of all that is going on, I look to her.


Bible Reflections:


"For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope. Then you will call upon Me and go and pray to Me, and I will listen to you."
-Jeremiah 29:11-12

This was the verse Chris and I selected for our wedding. God has a future and a hope for our whole family. We are to call on Him because He is listening. We will continue to pray and believe. Please continue to pray with us for Rylyn's immunity and our sanity over the next six weeks. We also believe in miracles and will be praying for healing. I feel the need to thank God for our blessings at this time: for our appointment today that was scheduled within a week (there is a 15 month waiting list), for the rush on the the gastroscopy, a pediatrician who set things in motion, a specialist who is just as urgent, for Chris and I both being off work, a tremendous support network (including amazing family and friends) and two beautiful healthy girls.


Comic Relief:


At Harvey's. "Cute girls. Are they twins?" It's already started. 2 months and 16 months. I thought the first time we would get asked this Addisyn would at least be one. Rylyn was waving her hands around and shouting and Addy doesn't even know what a hand is yet. The guy did have pretty thick glasses. The girls will be sharing clothes before I know it.

On a walk. Mailbox pictured below. Roped and duct-taped shut with a sign that reads "No flyers please." You could just remove it, the same sign is posted on your front door. I think it made me laugh more than the neighbours that parked a toilet on their lawn with a sign that said "Please don't poop on our grass." Not a word of a lie. You know you're a redneck when...

Chris took the picture on his phone...so it is not the clearest

Monday, May 14, 2012

God's Got This

I will post Rylyn's medical updates on my blog. We want to keep everyone abreast of any news good or bad and the prayers coming. This is the easiest on us during this time of chaos and will help keep the phone and inboxes at bay. As soon as we know, you will too. I think I may cash in my home cleaning gift certificates this month! :D
____________________________________________

"Thriving."

That's what was written on Rylyn's 6 week report when we were being released from midwifery care.

***
Friday:

"She's not thriving. She's not growing. If she loses more weight, we will have to hospitalize her. She has an ear infection because her immunity is down, that is what is causing the fever."

These are the words presented to us by the soft-spoken and gentle pediatrician we have been seeing the past two weeks only three days ago. If I wasn't paying attention to semantics, it would be like listening to the gentleman, and friend, with the English brogue reading scripture at church.

There is one blood test not in. We are warned that if that blood test comes back negative we would be looking at testing for Cystic Fibrosis (CF). My eyes well and I feel like I am in somebody else's body.

We leave the office and drive home to find a blessing: a phone call from the pediatrician saying the blood test is positive for Celiac Disease and we would be scheduled with the GI unit at McMaster for more testing.

***
Friday night:

I start a medical journal. To help ease my mind, I write down questions for our Monday appointment with the pediatrician.

For the first night ever, Addisyn is in her crib and I am in my own bed with Chris. We had been co-sleeping: me in my bed and Addy in the bassinet or Addy in her crib and me in the single bed across from it in the nursery. The initial relieving effects of the phone call we had received earlier were wearing off. Rylyn's room shares a wall with Addisyn's room. My mind needs  peace...the less I can hear the better. I am still worried about the unknown and CF. The seed had taken root. I cry and pray myself to sleep.

***
Saturday:

It is clear Rylyn is fighting something. I look at her. Really look at her. She lies on my chest. I count what is left of the rolls on her body. Two. One on each thigh. How didn't we notice earlier? Thank you God for this step back to look. Thank you for Addisyn...healthy, happy. Thank you for two parents on leave together.

I close my eyes to sleep that evening and I see my little Rylyn in a coffin. Why am I thinking like this? I realize I still feel like I am in someone else's body. Trying to uproot my worries, I cry and pray myself to sleep.

***
Sunday (Mother's Day):

Rylyn needs sleep. We can't go to church. I am still thinking about the unknown. I am still thinking about CF. Her cough has worsened but her fever is gone. I need to know people are praying. I really wish I could go to church today.

"I figure if people can home school, I can "home church" from time-to-time." The words of a wise friend come to mind. Thank you Jeanette. I sing and put on some worship songs as I "home church" and use the Internet to my advantage. I request prayer. I know Chris is at church leading worship and requesting prayer there.

Chris's parents feed us lunch. My parents feed us dinner. I know people are praying. I feel more like myself.

***
Monday (Today):

Everyone including the 2 month old has slept through the night, except for me. I have been up refilling the humidifier, checking for breathing...etc. But I slept better than the previous nights.

Drs. Appointment:

"CF is off the table. If the next Celiac test comes back negative, which is very rare, it is something else. However, your daughter's cough has worsened, I want chest X-rays to make sure it isn't pneumonia."

CF is off the table. It was never the Celiac that caused the fear it was the CF. It is what I need to hear. Celiac and pneumonia? I can do this. My "out of body-in body" experience is over.

"God's got this." I think of the words I wrote to a friend in a card a few weeks back. She emailed me the same ones in a note of encouragement this morning. The night she opened the card she had said, "I am going to make this my new life motto." I think I have found a new life motto too.

***

No pnemonia. Initial consultation with MacKids GI Unit tomorrow. God's got this. In the meantime, Addy and I will be blogging as Rylyn naps. Alongside the support of prayer I will be singing these songs:



Passport Photo Gong Show

Rylyn in our new fav shirt: "Justin Beaver"

Close family and friends know that we are in a position of waiting on news for Rylyn's health. We are waiting for a Celiac Disease diagnosis. A Celiac diagnosis would be almost as good as miraculous healing at this point because the uncertainty would be gone. What lies within the uncertainty are diseases that are more serious. We thank everyone for their prayers and support during this time of waiting. It is tremendous encouragement to us and is an extension of God's love for us. I will, of course, be blogging about our experience; however, I blog chronologically and save and revise posts before publishing them. Here is a lighter one, the last of the "yet to be published," as the next few may be a little heavier on the heart.


I hope posting this picture isn't some sort of felony


Husband and 2 little ones needed passport photos. Remember Rylyn is 16 months and Addisyn is a ripe 2 months. We pack up the family of four to get the mission accomplished.

Stop 1: Local CAA (we are members and get a discount there): "Sorry we don't do young children. We don't have the proper equipment." (Really? Are you sure you don't mean you don't like doing passport photos for young children?) "We can photograph you, sir." (No thanks, we'll take our business where they will photograph ALL of our family members).

Stop 2: Local Portrait Studio (as suggested by CAA worker as a family-friendly option): "Our photographer is with a client right now. It would be an hour wait." (Apparently only one person knows how to operate a camera at this location which advertises passport photos from the window).

Stop 3: Sears Portrait Studio: Sign that reads "Out for lunch, back by 3 pm." (Okay, this is getting ridiculous, but at least we are at a mall and can walk around a bit). At 3 pm we return to find a new sign "Out of ink. No passports." (SERIOUSLY? We packed up and drove around to three different places with 2 under 2 and kept them happy for 2 hours!!! This was three strikes you're out).

The next day, we went to Wal-Mart Portrait Studio (who I phoned in advanced and who said drop-in, no appointment, no problem) and they were FANTASTIC. The whole ordeal took a total of 15 minutes, including settling Rylyn who did not want to leave daddy. They used a puppet and took the photo with her sitting on daddy's knee and had me hold Addy in a special way to support hear head, but hide the hands (hint hint CAA no special equipment needed). We should have went to them in the first place, although they were a little further out of the way. Yay for happy endings.


Husband Humour:
Chris: "Why do the girls need passports anyway?"
Kara: "In case we win an all-expense paid trip to Disney."
Chris: Rolls eyes. "Right."


Bible Reflections:
"A cheerful disposition is good for your health; gloom and doom leave you bone-tired."
-Proverbs 17:22


Lord during our time of waiting, help us to laugh, like at the passport nonsense, that we may stay positive as we wait. Bless each person that waits and prays with us too. Amen.

Friday, May 4, 2012

Mine for a Time

I brought Addisyn to visit my sister's grade 5 class.

Earlier, Laura had warned her students that she would not be at school if her sister went into labour on a weekday. This seemingly small amount of knowledge creates a connection between teacher and students. It says, "I trust you; I want you to know me." Since Laura's class knew she was helping deliver a baby "that weekday" she was away, I had to visit with the baby. I was privy to share in a bond I miss with my own class and cannot experience while respectfully releasing responsibility to my replacement.

We sat in a circle.

"Can you put the baby in the centre?" a student asked, hopefully. I placed her in the limelight.

We watched Addisyn's eyes dart from student to student, a mouth turn from pouts to smiles.

The questions continued, from "How old is she?" to "Does she puke?"

Then it is was my turn to ask a question, "I am learning to be mom. What do you like best about your parents?"

The answers surprised me...

"They believe in me."

"They feed me and put a roof over my head."

"They love me even when I make a mistake."

"My mom has a lot of swag." Read: "My mom has a confident personality and I think she is cool."

Simple. What these kids love most about their parents are the things which, in my opinion, are innate. Being there. Protection. Unconditional love. Because, they belong to one another.

Each of these kids spoke like their parents were their heroes. I hope mine speak of me that way one day. I left them with this thought: "When you go home tonight, tell your parents what you shared with me today. Sometimes parents need to be told they're doing a good job and it will mean the most coming from you."

Rylyn chillin' with my dad
Addy chillin' with my mom

Bible Reflections:


"He brought me to the banqueting house, and his banner over me was love." -Song of Solomon 2:4

-The Shulamite woman speaks of her Beloved, analogous to a person's relationship with Jesus. He feeds and protects His sheep because He loves them unconditionally.


Lord, I thank You that you feed and protect me. I thank You that Your banner over me is love. Help me to feed and protect my children like You do, that they would know my banner over them, like Yours, is love. I thank You that they are mine, for a time, and we are Yours.

Saturday, April 21, 2012

Red Pepper Rash

Sweet Addy and her baby acne
Sleeping after a couple of hard nights

Addisyn has baby acne or an infant rash dotted over areas of her face, head and neck. Over Easter weekend the rash brightened, intensified and she became extremely irritable in the evenings. Out of character. I was having flashbacks to Rylyn's nightly crying spells, which for her, were in character. To be sure we weren't transitioning to a purple period, like we did with Rylyn, the science teacher in me decided to analyze my diet. Woo hoo a scientific experiment!

I cut out anything with flavour and common allergens (e.g. dairy, nut products, "gassy vegetables," chocolate) for three days. Mmmmm, bread and water. I was dying for a Coke the whole time. I then began to work foods back in to my diet, every two days, in the order listed in the parentheses above. Addy went back to herself. Cooing and kicking in the evening, rather than crying. I also took her out to ensure it wasn't the change in our routine that upset her.

The only items different in my diet over Easter weekend were red pepper and hummus. I was not interested in reintroducing them as she was clearly in pain while crying. Although I believe the problem food to be red pepper, I can manage avoiding all bell peppers and hummus while nursing.

Interestingly, Chris has an aversion or sensitivity to peppers. A little research found that in a few infants red pepper causes dermatitis and fussiness. Not that I have had any while nursing, it is clear Addisyn had enough pepper in the vats of Frank's I poured on food during the pregnancy.

Bible Reflections:
"And He said to them, 'To you it has been given to know the mystery of the kingdom of God; but to those who are outside, all things come in parables, so that seeing they may see and not perceive, and hearing they may hear and not understand; lest they should turn and their sins be forgiven them.' "
-Mark 3:11,12

-Jesus spoke in parables so that those who were seeking God's heart would better understand His mysteries. Lord, help me to understand both your mysteries and those of the children you have entrusted to my care.

Tuesday, April 10, 2012

Puke Pack



"Puke Pack"

Disclaimers: This entry is not for the queasy. As always, consult health professionals or your family doctor for health concerns.

Random vomiting. Gotta love toddlers. Teething related? Food sensitivity? Weak gag reflex? We have been keeping a puke journal for Rylyn for the past month so we can discuss our concerns with the doctor at our next appointment. Until then, I feel like Nancy Drew. The vomiting appears to happen on days she is teething and gags while eating. Switching from homo milk to 2% and eliminating yogurt from her diet, in addition to watching for gagging and encouraging chewing, has decreased puke incidents from up to 3 times a week to less than once a week. The episodes happen only once in a day, often at or after dinner time, and Rylyn feels better immediately following her throwing up.

The challenges with toddlers tossin' their cookies are numerous:
-it is sudden
-it is messy, they just throw up all over themselves
-they want to hug you after
-it smells because they are still intaking a significant amount of milk in their diet
These challenges became evident at our first public puking event at church one Sunday morning. We were entirely unprepared, but with some help managed...barely.

Pictured above is our "puke pack," located in the trunk of our car. I developed the puke pack after several incidents of public projectile puke. How is that for alliteration?

"Puke Pack" Contents:
-roll of paper towels
-baby wipes
-Lysol wipes
-2 plastic bags
-1 diaper
-1 sleeper
-1 adult-sized t-shirt
all crammed inside a large Ziploc bag.
The reusable grocery bag is for inside the car door and is our "bucket" in case we ever have to pull over in the car.

Our Plan:
-have a bowl on the table for meals, e.g. we keep a bucket on our kitchen table
-if a bowl is not available have ready access to napkins and be prepared to catch with your hands lined with napkins (We discovered this strategy at Harvey's (the fast food restaurant) one afternoon. The napkins are surprisingly absorbent. Fold and reline hands as needed).
-if an episode occurs at a time other than meals, move child to a sink or area that is easy to clean (e.g. not carpet), keep child close for comfort (some say allowing to puke over the shoulder is effective, but I like to see where the vomit is going so I prefer more of a seated cradle carry)
-if you are fast there will be limited vomit to clean up (like in Harvey's), if you are not it is a hurricane of mess (like at church)

Damage Control:
-send someone to grab puke pack from car if items are not readily available
-clean-up is a two-person job, get help if you can, otherwise deal with the toddler and yourself first and then the environment
-strip soiled clothes and put in a plastic bag or wash
-baby wipes or shower to clean toddler and self
-fresh clothes and lots of hugs
-paper towels to clean mess and a disinfectant afterward
-give toddler some juice or water to settle them and their tummy

Our latest episode was at Easter dinner. I am surprised anyone ate dessert! As I was breastfeeding, daddy was at the helm with some family members eager to help and others wanting to flee the premises. The puke pack was in the car, ready for use, but in the turmoil did not get to make a true debut (everyone was scrambling to help in their own way). They were dealing with the initial shock of the event, which Chris and I no longer have as this has become routine. In the end, we had a clean child and table and that is all that really matters.

I'll end on this:

At Harvery's after Addisyn's first visit with great grandpa Gord (pictures below), Rylyn had puked and we had successfully cleaned it up.

(Walking out the door).

Kara: "I think anyone watching would have thought we had it together."

Chris: "I think anyone watching would not want to finish their lunch."


Meeting Addisyn

Putting Addy to sleep

Reading with Rylyn
Bible Reflections:
"So then, because you are lukewarm, and neither cold nor hot, I will vomit you out of My mouth...As many as I love, I rebuke and chasten. Therefore be zealous and repent." -Revelation 3:16,19

"For out of the abundance of the heart the mouth speaks." -Matthew 12:34b

-Jesus is forgives. Those who celebrate Easter, celebrate the forgiveness of the cross. After finger-pointing to sin in Revelation 3:16, there is a call to forgiveness, verse 19. Whether one's priorities have been wrong or one has used their speech to curse rather than bless (word-vomit!), whatever wrongdoing, Jesus says, "Be zealous and repent," because He love us. Accepting or turning down this call is choosing to be cold or hot. If one keeps returning to sin or is indecisive, one is lukewarm. Zealousness is more than enthusiasm, it is enthusiasm yoked with diligence to repentance and devotion to the Love the Christ.