Thursday, February 18, 2016

Sweet P at 1 Year Old!

I’m officially almost 2 months late on this update. Have I mentioned that having a preschooler, a toddler, and 3 work-from-home jobs is a bit time consuming?
Sweet P is such a happy and sweet little girl, and her one year birthday celebration was such a gift! After such a rough start and and all of her tummy issues over the course of the past year, celebrating this milestone with her was such a celebration! Along the way there were emotional days where I thought there might never be an end to the screaming, food issues, and sleeping poorly and getting to one year old seemed impossibly far away. But, it came and she is rocking one year old like a pro.
IMG_6168 - Version 2
Weight & Length: Sweet P 22lbs and 3oz (70th percentile) and 29.2″ tall (23rd percentile). Her most impressive statistic is that her head is 47 cm, keeping her in the 93rd percentile for head size. 
Sleeping: We made so much progress by one year! Sweet P is taking two predictable naps and usually sleeping through the night. It would take her about 30 minutes to calm down enough to sleep for her naps and at bedtime, but since she still sleeps at least an hour and a half for each nap and her only occasional night wakings were for a pat on the back and pacifier, we are quite happy! She’s still a night owl and sleeps from about 9pm-8am, with naps around 10am and 2:30pm.
Here is my beef cube “cake” with coconut milk kefir “frosting.” She loved it!
Eating: Sweet P made so much progress between 9 and 12 months! She has beef broth, beef, pork broth and pork, coconut milk kefir, breastmilk, and cod liver oil. This is not much variety for most one year olds, but it’s a lot when just a few months ago I couldn’t imagine her tolerating any solids at all! I was able to make a beef birthday “cake” with coconut milk kefir “frosting” which she devoured. I will share more about her progress with the GAPS diet in an upcoming post.
Clothing: Sweet P now wears all 18 month clothes. The pants might be a bit long, but they fit everywhere else.
Personality: Sweet P really deserves her code name of “Sweet P!” She is SO sweet and loves to cuddle and give us hugs. She also loves holding, feeding, and kissing her baby dolls. One of her favorite things is climbing into Little PiƱata’s bed when we get him up from his nap and snuggling with him. I will say that when she’s not happy, or has a toy taken away, she still has quite the high pitched scream. You know your child has a high scream when hearing the sound of a siren makes you think your baby has woken up from their nap.
Milestones & Firsts (since 9 months):
-First plane ride
-Started clapping
-Mastered pulling up, even in a sleep sack!
-Stands independently for several seconds
-Started waving
-Replaced scooting with crawling
-Tried and succeed for the first time with solid food! (Beef, pork, and coconut milk kefir)
-Started cruising
-First Halloween (our little Piglet) & Thanksgiving
-Transitioned to a sippy cup from a bottle during the day
-Mastered pincer grasp with solid food

Tuesday, February 16, 2016

December Photos!

So, just a couple of months late, here are some pictures from our fun-filled December! I accidentally uploaded them in the wrong order, so here we are starting at the end of December instead of the beginning. Whooops! :)

It was a really fun Christmas with both kids. PLUS, we celebrated Sweet P's first birthday! What a year it has been. I had lots of "what last year was like" thoughts as we prepared for her birthday and Christmas, knowing that we didn't even know about her last year the first week of her life. She has sure had some trials this year, but we are so grateful that she is our daughter! More than a year later it still seems unreal that we have two (great!) kids! 
Super Hero Cousins! 
Our Sweet P LOVES babies. Here she is feeding one of Christmas gift baby dolls. 
Christmas gift hat and gloves! (And another baby doll)
Precious photo of the buddy with Uncle Adam
His easel was a great gift for Nana and Papa!
The buddy's first Christmas program! He was a sheep!
I had forgotten how warm it was this Christmas! I can't believe we were wearing short sleeves on Christmas Eve!
This was a top gift for sure. With all the broth I make for Sweet P for her diet, this large stock pot has been a life saver! 
Opening gifts
The buddy and his grandpa are big basketball fans. So, he got a "fathead" of Steph Curry for his wall.
Family date to the Nutcracker! The buddy LOVED it! 
Sweet P's birthday "cake"
How in the world is she already one!?
This sweater was made for Dave by his aunt when he was a kid! 
Christmas lights! (with our adorable sheep baby)
Santa wasn't the biggest hit ever. haha
I couldn't resist posting this sweet photo of these two. :)

Thursday, February 4, 2016

We're Still Here!

I've said it before and I'll say it again. I'm the worst blogger! Eek!

I am awful at checking blogs and even worse at writing them. :/ I didn't realized exactly how bad it was until I saw that I hadn't posted since October. Sheesh! That's almost 4 months now! Almost 1/3 of a year. That's just plain embarrassing.

But, we are here and doing well. Holidays were crazy, jobs are busy and kids are time consuming, but we are doing so well. I recently had a very close friend ask how I was really doing and I answered with "grateful". I feel so grateful for both of our kids, our new home, jobs with good insurance, etc. There was quite some time I never thought we would get here (especially the good health insurance part... haha). We spent YEARS waiting and praying for Dave to have a full-time job, waited for kids (not as long as some, but it obviously wasn't an easy process), spent over a year looking for a home, dealt with pretty frustrating health/tummy issues with Sweet P (we are making lots of progress but it's still SLOW), and being on the 'other side' of several of these trials we are so, so grateful.

But, I do know that life is not designed for my comfort, so I know more trials await us in the future. But, today, I am grateful. Both kids are (mostly) sleeping all night and (finally) going to bed at a reasonable hour. Yay! This is much progress, especially considering how I kind of thought I would never sleep again during Sweet P's colic phase.

So, nothing terribly exciting has happenned in the time I haven't blogged. I would like to share more about our journey with the GAPS diet for Sweet P, and share some sweet photos from Christmas and our recent trip to the beach (Can I just say that I LOVE it when family moves to great vacation spots!), but for today this update will have to do. :)

I know there aren't many people that follow our blog anymore, but I know there are those of you out there still waiting for so many things in your life, and I'm still thinking about and praying for you all whenever you come to mind (which is often!).

Wednesday, October 14, 2015

GAPS for FPIES: Part 1

If you read my last post, you saw that we were going forward with the GAPS diet/protocol to heal Sweet P’s FPIES and immature gut. Because she never had a vomit-to-shock reaction to any foods, we don’t know if she 100% has FPIES or if we are just dealing with an immature gut. Either way, the GAPS diet addresses both of these issues. I will preface the rest of the post by saying that neither Dave nor I are medical professionals, but do want to share what we are doing with others, in the chance that it helps someone.
GAPS came highly recommended from a friend of ours that had a daughter with severe FPIES, and so wanted to give it a try. GAPS stands for Gut and Psychology Syndrome, so actually much of the research and protocols for the diet come from the understanding that our gut health directly affects our brain’s functioning. So, even though the focus of the GAPS diet is to work on gut health to help create a positive and healthy gut flora, many people to GAPS to help with issues like ADHD, Autism, and other health concerns that are related to the brain. Other than having heard about this diet, we were total newbies, so our first step was to buy the GAPS book by Dr. Natasha Campbell-McBride. I love how she started the book off with the research that shows how, as a society, our gut health has deteriorated, and what the effects have been. I highly recommend the book for anyone interested in the gut/brain connection.
From the research and reading we have done, when adults or children who have already been eating solid food get started on GAPS, it is recommended that they start with the Intro version of the diet (there is the Intro and then 3 stages). The Intro means starting with homemade bone broth and only meat products and a few select vegetables. But to be quite honest, we haven’t done much research in terms of how to do GAPS for grown ups or older kids, because we are obviously starting from scratch with our Sweet P. I felt overwhelmed and wasn’t sure how to start. So, Dave and I decided we would hire a GAPS practitioner. This is someone who has been trained specifically in the GAPS protocol by Dr. Campbell-McBride. We felt that even though it would be more expensive this way, that it would be worth it.
She loves getting her broth from a spoon!

After some research and networking, we found a practitioner who has worked with multiple babies and children with FPIES and been able to get these kids on full, healthy diets by following the GAPS protocol. Knowing we have this woman as a resource to go to whenever we have a question or a possible issue puts my mind so much more at ease than if I felt like I had to do all the research on my own.
The practitioner we chose has been awesome and a wealth of information for us so far. I was afraid we were going to have to take Sweet P off of her Alimentum formula because it’s full of non-GAPS-approved foods, but she had enough experience to let us know that was not a good idea. What she recommended, and what we have done, is start with 1 tsp of homemade chicken broth (from a pasture raised/organic chicken) twice a day, and to slowly increase it until we eventually are able to replace the Alimentum with the broth while keeping 15-20oz of breastmilk in her diet. And by that point, she would hopefully be tolerating several solid foods as well.
We are about to start Week 4 and Sweet P is doing pretty well! The big key has been to go slowly. After 3 weeks she continues with the same amount of breastmilk and formula, but she now has 5 servings of 3-3.5 tsp of broth each time! I know it’s still such a small amount, but it’s progress! She did have one incidence of diarrhea-ish poo a couple of times along the way, so we have had to back up and then build back up again. This week I will add pureed chicken meat and fat to the broth (I previously skimmed that out), and if she does well on that for a week or so, we will start giving her tiny pieces of chicken to start practicing how to eat finger foods.
I know this will be a long and slow journey for us, but we are continuing to hope and pray that going the GAPS route will be so beneficial to her and her gut health in the long run.
This picture actually has nothing to do with GAPS, but everything to do with how cute and hilarious this photo is from my birthday dinner at a Mexican restaurant. She couldn’t eat anything while we were out, but she got to watch us eat, so that counts as related to this post, right? (Also, I know her car seat straps are a little low; rest assured that we raise them to armpit level for the actual car ride.)

Thursday, October 8, 2015

What is FPIES?

I have shared that Sweet P is likely dealing with FPIES. But, for most of you (like it was for me before), this is a strange acronym with which no one is very familiar. This is because it's only recently begun to be recognized and diagnosed more. Before October 1st, it didn't even have an official insurance code!

FPIES stands for "Food Protein Intolerance Entercolitis Syndrome." The basic definition is that it's a type of food allergy that affects the gastrointestinal (GI) tract. Symptoms include vomiting, diarrhea, constipation, or even lethargy. What this means is that when certain proteins from certain foods are introduced to your child, the GI system rejects them and the body has an allergic reaction. However, instead of the usual allergic reaction people think of, like rashes, hives, difficulty breathing, etc., the body reacts through the digestive system. 

The way our allergist described it to me (in the most basic way I'm sure) it is that we have an immune system for our body, and a separate immune system for our digestive system. Instead of the body's immune system identifying a food as an attack against the body, the immune system of the gut identifies the threat and therefore tries to rid the body of the 'threat' through vomiting, diarrhea, etc. What makes it so difficult to diagnose FPIES is that there is no actual test that can determine what foods the child will not react well to. With typical IGE allergies, there are blood tests and skin patch tests that can be done, but these tests do nothing to predict or identify which foods a child will have an FPIES reaction to. The only way to tell if a child with FPIES will react negatively is to actually trial the food over the course of several days to see if there is a negative response from the digestive system. For many kids the reaction is quick and severe, with vomiting to shock episodes within 2-3 hours after consuming the food. I'm so grateful we haven't had that experience as it sounds so scary! We did discover at 3 months that one of Sweet P's trigger foods is dairy, but her symptoms were reflux, colic-like screaming and poor sleep. Her only other symptom so far has been diarrhea.

Both our pediatrician and allergist think that based on her exposure to food and the following symptoms she likely has FPIES, but haven't officially given us the diagnosis, since there is no official test to give and thankfully so far, even though she doesn't really have "safe" foods, her reactions have not been severe. Unfortunately, the most common FPIES trigger foods are typical first foods! Dairy and soy (the main formula ingredients of course) top the list, followed by barley, rice, oats, peas, green beans, sweet potatoes, and squash. But, just because those are the most common doesn't mean that kids can't react to other foods as well. Sweet P ended up having issues with carrots and apples, two of the 'safest' foods for FPIES kids, so when a parent suspects that their child has FPIES, they will need to try each food slowly to be sure the food is tolerated well before adding new foods to their child's diet.

The symptoms and reactions are generally divided into two different categories, acute or chronic. Children with chronic FPIES symptoms usually have a hard time gaining weight and are lethargic babies, which can be extra stressful as you're trying to figure out what you can safely feed your baby. Vomiting, diarrhea, and other immediate gut responses would be included in the acute category. Although kids often have just one or the other reaction to a negative trigger food, some kids can have both. The only treatment for FPIES at this point is avoidance of trigger foods. Most children with FPIES just have a handful of foods that they can't tolerate, but some kids can't seem to handle any solid food, and this includes our Sweet P. 

Oftentimes parents don't realize their child is reacting poorly to foods until they try it in a solid form, but some babies are even sensitive to foods introduced through breastmilk. We are grateful that so far Sweet P has been able to take donated breastmilk as long as the donor is dairy free. I know it must be a difficult road for mothers who want to breastfeed and just can't seem to figure out what trigger foods are bothering their little ones. Oftentimes the baby ends up on hypo-allergenic or elemental formula because it becomes too difficult to determine which foods are causing the baby discomfort. In our case, Sweet P tolerated Alimentum just fine, which is a hypo-allergenic formula that is very expensive and can still be found in grocery stores (similar in content to Enfamil's Nutramigen). If the baby still reacts to these formulas, they can end up on elemental formulas like Elecare or Neocate. These elemental formulas are as broken down as possible and are made up of amino acids for easiest digestibility, but are even more expensive and are generally not as easily accessible. 

Thankfully, most children grow out of FPIES. Usually by age 2 or 3 kids can tolerate foods that previously made them sick. However, that's not always the case. I am in a couple of online support groups for moms of FPIES kids and there are several moms of 4, 5 and 6 year olds who still have zero, or just a handful of safe foods. This means the majority, or all, of their nutrition comes from elemental toddler formulas, while they continue to wait for their children to grow out of it. 

In retrospect, I think the buddy had a FPIES reaction to eggs, as after just a couple of tries with eggs and a very scary vomiting episode around 9 months old we avoided eggs like the plague until he was 2. We tried them again in muffins to start and by that point he had grown out of it. I remember it was a pain to be sure that there was never any eggs in any of the foods we offered him for over a year. And that was only one food! 

I hope and pray that Sweet P also grows out of this as well, especially since at this point she has yet to tolerate solid food well. If you are interested to learn more about FPIES some great resources are The FPIES Foundation and the International FPIES Association.