Trying

During all the busy-ness of taking care of Beckett and juggling dozens of appointments each month, it is easy to feel like we don't have much time for fun and "normal" activities. And while I will still say that things are not typical around here, I am really trying to find ways to work fun activities into our schedule. So, when we had our appointment at Texas Children's for Beckett's EKG, I thought it would be a great opportunity to make a trip to the zoo with my two sweet boys!

Playing in the waiting room with one of his favorite type of toys! He loves these wooden block toys and the fish in all the waiting rooms.

Digging into the toy box with determination!

Brant loved looking at the 20th floor windows. He could see the "ocean" from there. :)

And what luck! There was a construction site across the street that kept our little "Bob the Builder" fan quite entertained.

EKG- quick and painless until it is time to pull the tape off! That part hurts!

Photo taken by big brother! A bit blurry but he thought it was fun!

This boy absolutely loved the train ride! He waved at all the students on their field trips. Then, he got "tired of waving the people." We rode past the dinosaur museum, and that got him waving again. "Hi, Bracheosaurus! Hi, T-Rex!" He also loved going through the "tunnel" and over the bridge. Brant loves trains!

Beckett just sat back and took it all in. I think it was very calming to him. He was very quiet until we got to the bridge going over the water to which he said, "lalalala," making his little water noise.

Then we made it to the zoo. Brant loves making an awesome elephant noise. It is the cutest thing ever, and now he is teaching Beckett to make the noise too! His favorite animal is still giraffes.

Beckett is more entertained watching his big brother than checking out the animals.

Cutest little baby elephant! It was fun to watch the baby elephant and mommy elephant. They were eating lunch.

We definitely enjoyed our day out, and there will definitely be many more zoo trips this Spring. It was nice to just be outside and to watch the excitement on Brant's face as we explored. He had a lot to say about the animals and really enjoyed taking it all in.

I am pleased to report that Beckett has gained some weight! Whoo Hoo! Increased appetite and motility medicine + feeding tube= weight gain! The nurse will come again on Friday to check his weight, but I think it will keep going up! His development is also moving forward. He does seem to have more energy. I would like to know why it takes so many calories to make him grow and thrive.

His medicine is working, and his appetite really has seemed to increase even more. He ate so much over the weekend! He definitely eats enough during the day that he *should* be growing very well. He has once again improved his daytime formula drinking. We are still adding duocal to his foods and doing everything we can to feed him highly caloric foods. We want to fill his little stomach with food rich in calories and not waste the space with low calorie food as much as possible. Of course, he does have his opinions on what he would like to eat!

For right now, we are to feed him all types of food, disregarding any intolerances or suspected allergies. It is basically a situation where the only way we will know is if we try. We have been given the go ahead to feed him anything! (Of course, it's not really that simple). So far things seem to be going okay. It is hard to judge if something makes him sick or not as he really always has trouble with his processing of foods. He still primarily prefers crunchy food or pureed food and nothing in between. He did enjoy some cookies over the weekend, but we later discovered they might not have agreed with him so well. But we have to try. I think we are exposing him to allergens so that allergy testing will be more effective. We are also seeing what he is capable of digesting and eating with his new meds. It is all such a process of trial and error--as we have learned over this last 17 months! But we are trying!

Thanks for checking in with us! Happy Leap Day!

Not Too Much To Report

Well, I don't really have to much new stuff to report this week...just a lot of ramblings.

The continuous night feeds through his NG tube have been going very smoothly. I will post pictures of how this works next week. He is tolerating them quite well for the most part (they are not making him sick to his tummy) and he is still sleeping through the night--with the exception of one bad night. He has not pulled the tube out of his nose yet! I am so thankful for that as I am the one that would need to put it back in. I do not look forward to doing this.

However, the odd part (well, not really so odd for Beckett) is that he has not gained any weight from the additional feedings. He weighed the exact same to the hundredth of a pound when we weighed him this week as he did last Thursday. Who does that? One would expect weight to fluctuate slightly regardless, but not Beckett's weight.

The first couple days went very well. He continued eating his normal amount during the day plus the supplemental feedings at night. He was getting a grand sum of 1300 calories/day! Roughly the same amount of calories I eat in a day. But then he started to realize that his Elecare formula doesn't taste so great, and he gets it through the tube at night, so why drink it? He has decided to be quite picky about the amount of formula he will drink. We are working with the dietitian to figure out how to get even more formula into him as he has decreased his daytime bottles. I believe we will get it all balanced out eventually and hopefully he will start to grow. At this point, one week in, I do not believe the tube can yet be determined as a success. However, it is also not a fail. It just needs more time and we will see what happens.

Beckett is getting very chatty. He likes to say "dada" a lot--over and over again! It is probably his favorite word right now, along with "puh" which refers to food or anything else he might like to have. He also likes to say, "Bah" (ball). My favorite is his term for water, and it is completely indescribable. It is a funny sound he makes by rolling his tongue and making gurgly noises. It is too cute.

This week, he has an appointment with his ENT to follow up on his tubes and discuss the horrible (I mean, horrible) double ear infection he had last week. After his appointment with the ENT, we will go down the street to get an EKG. Big day! I am finding all the appointments to become very draining. This month, he will have seen 6 doctors, a nurse on 5 occasions, along with his speech therapy and ECI. And he has been on 6 rounds of antibiotics since the first of the year. We are still searching for answers as to "why?" he has these health problems. It has been a long month.

It does get exhausting and in all honesty, I am very weary this week...just kind of running out of energy. I actually drank coffee this morning. I do not like coffee and have never been a coffee drinker. But that is what it has come to! :) I made a special coffee beverage this morning with about 2/3 coffee, 1/3 mint hot chocolate, a lot of vanilla creamer, some sugar, and a Hershey kiss! Clearly, calories were not my major priority this morning! :) I'll have to work on that and learn to drink coffee with less extras! Any tips to good coffee or favorites would be greatly appreciated!

Thank you so much for checking on us and for your prayers for our family.

First Steps

I was trying to save this post until I figured out how to post videos, but I was too excited to wait.

Guess who is taking his first steps??

Beckett!! He has started taking a few steps around the house every now and then, and it is so cute. He looks so proud of himself! He knows he has done something great. He even claps for himself. And then plops down and says, "ah done" (all done). It's too cute. He loves to perform. I am going to try very hard to figure out how to post a video soon.

We feel very hopeful that he will "catch up" soon across the board and be a busy, chatty little toddler. He is going to be our climber, I do believe. He has just had a bit of a rough start with his health, but he is making wonderful progress. I think as he feels better and better, he will continue to learn new things. We are so proud of his latest accomplishment! Yay Beckett!

ECI and NG

Quite the tape job, but I really don't want that thing pulled out! So far, the crazy tape has been successful! Now, just to see if the extra feedings help him grow!

Initials that not everyone knows the significance of...

Today we finished all the paper work for Beckett to begin receiving Early Childhood Intervention (ECI) services. Beckett tested in roughly the 9 month old range across the board in development- communication slightly lower. This means he is delayed by about 8 months at this point...nearly 50% of his age. He has global developmental delays (GDD). As a child with Failure to Thrive (FTT), he automatically qualifies in our state to receive some services such as a dietitian, and after his comprehensive developmental evaluation, he will be seen once a week for 45 minutes in our home by a developmental specialist. They said that before they start occupational therapy (OT) and physical therapy (PT), he needed to gain some basic skills and attention. Basically, he needs to learn to play with a toy for a period of time, etc. And then we will go from there with another PT/OT evaluation.

He has been in speech therapy for several months now, and we are very pleased that he has moved all the way up to the 8 month level in communication. That is quite a big accomplishment from where he was at one year old. We are proud of his progress. The way ECI works is that if you receive services from another source, such as a private practice, then you cannot receive ECI. So you need to choose what you want to do and then actually "refuse" those particular services. So we did "refuse" the speech therapy that he quickly qualified for so that he can continue with his current speech language pathologist (SLP) at the private practice. He has made so much progress in his communication and oral motor skills and we are very thankful for that. Even ECI suggested that we continue with his private practice as it "better fits his needs at this time." A case manager will contact me next week to get all of this started.

This was a lot to take in, of course. I am thankful that he will be getting the help and support that he needs developmentally, but it is still difficult to hear.

Just as ECI was finishing up, the home health nurse came to check on Beckett. She was so pleased to see he hadn't pulled out his NG tube! Yay, Beckett! He actually doesn't even try. It's as if it is not there and does not bother him one bit, well, until you take his shirt off and he realizes there is a tube against his back. I am so thankful to report that he slept all night and "tolerated" his feed. This basically means that it did not make him sick. He gained .06 lbs from yesterday to today. The nurse will come gain tomorrow and weigh him and check his tube placement etc. After this week of 3 consecutive visits, the nurse will come once a week for at least 4 weeks. I am so thankful to have this support from nurses this go around. It takes A LOT of stress off of me as we learn about caring for the tube. This has made a very big difference for us between our last experience and this experience. I am definitely much calmer about it and feel much more confident.

Between speech therapy, the ECI meeting, and the home health nurse, Brant had a very long day himself! :) He was very ready to get to play and be silly when it was all over. He is quite the trooper of a big brother, and I am proud of him.

Thank you so much for praying for us during this time. It has been a stressful week, and I am so thankful for our heavenly Father who takes care of us all the time--including when we are outside of our comfort zone.

Thanks for checking on us!

~Kaylan

Comfort Zone

I read this today on a blog that I enjoy following:

"When God moves us out of our comfort zone -- into places that are way bigger than us, places that are difficult, hard, painful-- that even hurt-- this is a gift.

We are being given a gift.

These hard places give us the gift of intimately knowing God-- in ways that would never be possible in our comfort zones."

Ann Voskamp, author of One Thousand Gifts: A Dare to Live Fully Right Where You Are, shared these thoughts from her book on her blog today. It is a must read. She is an amazing author, and I am currently reading this wonderful book. I believe it is life changing. I would highly encourage you to check it out. I will post more about this dare soon.

Last week was one of our tougher weeks. Really, it's all tough- learning how to navigate this medical world and taking care of a child with some special medical needs- but this week was just hard. One that sent me out of my comfort zone time and time again. Four of five weekdays spent with doctors. Respiratory infections, GIs, Genetics, and the most severe ear infection I have ever witnessed. Constant phone calls with nurses and home health care agencies. Tomorrow, we venture back out of our comfort zone by giving the NG feeding tube another try. To read about hour first experience with a feeding pump, click here.

I was on the phone with home health just under 10 times today. There were communication problems between home health and Texas Children's. It was finally resolved, and tomorrow a nurse will come help us place the NG tube and give us instruction and guidance on how to replace the tube in the event it is pulled out. Please pray that sweet boy doesn't feel the need to pull it out constantly! Equipment will be dropped off again, and we will try this again. So tomorrow, we go out of our comfort zone again.

Last week, we saw Beckett's GI doctor. His weight had improved, but in the big picture, he had only gained half a pound in over 4 months. His height has remained the same. So, it was determined that it was time to revisit the feeding tube. The tube will go up his nose and down into his tummy. We will then hook the tube up to a pump that will feed Beckett continuously at a slow rate throughout the night. We will see how well he tolerates this type of feed, and adjust it as necessary. He does eat by mouth and will continue to. Because of his gastroparesis, he cannot fit the same amount of food in his tummy as most children. The motility of his digestive system is slow-moving and this effects his ability to consume enough calories. We feed him very often throughout the day in smaller amounts to accommodate this. However his formula intake has decreased over the last couple months. I think he realized it doesn't taste so good! By our calculations, he does eat the appropriate amount of calories, but his body needs more. We are still testing to learn why he needs more. It may be the Cystic Fibrosis tissue in his colon or it may be malabsorption or other possibilities. Still testing. Still waiting. We are also still testing for reasons behind his severe constipation. Constipation honestly sounds like such an understatement. But the doctor decided it was time to move forward with the feeding tube to ensure that Beckett is getting the nutrition that his special little body needs. We are also going to be starting the enzyme trial soon, but are hoping the NG tube will bring him more immediate help.

Please pray that the feeding tube doesn't irritate Beckett too much, and that he is able to tolerate the feeds. Pray that he doesn't pull it out constantly! I am very nervous about having to put it back in. Pray that he is able to sleep safely with the tube. Also, please continue to pray wisdom and guidance for me and hubby as Beckett's parents and advocates for his health needs as we continue to search for more answers and more solutions.

Thanks so much for checking in on us! I will be sure to let ya'll know how it goes! Have a good week and really, go check out Ann Voskamp's blog. Love it!

~kaylan

A Bit about Beckett-16 Months!

Playing Peek-a-boo in his high chair!...well, with a lot of peeking and not so much hiding the eyes! Yay Beckett!

He loves Cheerios!

At the end of last month, Beckett turned 16 months! I can hardly believe it! I wanted to take just a minute to share a little about Beckett- his likes, dislikes, developmental milestones. This has been my virtual baby book, so I feel like it is time to do some catch up! He is a very precious little man with a big, friendly personality.

Beckett's first spontaneous meaningful word was "uh-oh" at almost 14 months. And I am pretty sure it is still his favorite word. Over the last month, his vocabulary has really improved. He started with signing, "more" at around 15 months. He now has about 5 to 10 spontaneous meaningful verbal words. Still waiting on that sweet word, "mama." He started speech therapy right after he turned one. At that point, he was not really waving bye-bye, not clapping, not reaching up for "up," or playing peek-a-boo. He has made great progress since his first birthday, and he now waves, claps, and reaches up. A few weeks ago, he played peek a boo for the first time in his high chair. I have this on video and will figure out how to post it soon. (Or have hubby figure it out...haha) These are huge strides for him, and we are so thankful. Beckett seems to have a more difficult time with receptive language (following a simple direction or understanding what people are saying to him). I am so proud of the progress he has made in this last month, and I accredit much of it to eating and sleeping! :)

Beckett is doing very well cruising around the furniture. He also has a little lion walker that he loves to push around. He is using it more and more lately. He has become a very fast crawler especially when there is a remote to be had! We are hopeful that he will learn to stand up independently and walk soon! Gross motor and fine motor is a bit of a challenge for him. Early Childhood Intervention came out and evaluated him last week and his skills are a bit all over the place. And it doesn't make much sense. For example, he can pull up and cruise around the couch with ease, but he cannot sit up, tilt his head back and drink. He needs to be laid back to drink because he cannot hold himself up in that position. It is also difficult for him to sit in a grocery cart throughout a shopping trip. When I push the cart, it makes him tip over so he needs me to hold on to him. I prefer to wear him in his Baby Bjorn at the store because it seems much safer since we haven't mastered cart sitting. We also want to work on fine motor skills such as picking up his food with his thumb and his index finger as opposed to grasping one cheerio with his whole hand. He likes to move around, dance, and be busy, but he also tires a bit easily and is very content to lay on the floor or sit in his new little chair and watch TV. He likes his "downtime" for sure. His favorite shows to watch our Baby Einstein, Praise Baby, Mickey Mouse Clubhouse, and Special Agent Oso (with his big brother.) I am sure he watches too much TV for a one year old, but at times it really is the only thing that calms him down and lets him rest.

Beckett now has FIVE teeth. Whoo hoo! Around 15 months, he got two more teeth on the bottom. Quickly followed by one more on the top. Then this last week, his second top front tooth broke through. Yay! He worked very hard on those teeth. For months and months, it truly looked like those teeth were going to break through. People at the store would see him and say things like, "Oh, he is about to get those top teeth! Look at that!" And I would smile, and say that he had been working on those teeth for months in a very friendly way. The response was usually that yes it feels like months when babies are teething, but it goes pretty quickly. And I am thinking while I smile and nod, "no. i literally mean months." haha! But that's okay.

His likes: favorite toys are wooden puzzle pieces that he carries around, dvds that he throws out of the drawer, toys that light up and sing, his turtle that shines stars in his room, and his playhouse. Oh, and anything of his big brother's that he can get his hands on (trains, cars, etc). He likes to eat puffs and would eat them all day long. He still likes his Elecare formula and drinks 4 bottles a day of it. He enjoys riding in his stroller and going to the park...so much so that when we walk by the stroller and into the house after an errand, he screams at me to go for a walk! He also really likes his bed...after the first 6 months of rarely sleeping in his bed, this feels like a miracle. And he LOVES his blue blanket and cuddling!

He dislikes: getting his clothes changed, having his face washed, or getting his diaper changed. He also is not a fan of green beans or homemade baby food. He doesn't like it when things get very loud or crazy. Sudden noises or movements upset him. He definitely does not like to be woken up from his naps to get Brant from school. And as soon as we walk in a door to a doctor's office from a waiting room, he starts to cry and fuss. Bless his little heart.

His growth is still a struggle for him. He has managed to gain about 8 oz and 1 cm over the last 4 months. He doesn't outgrow clothes at the same rate as they get ruined by bleach! He wears mainly 6-9 month clothes, with some variances in each direction, and a size 2 diaper. His head has continued on his growth curve though! And he has the cutest, chubbiest cheeks of any failure-to-thrive baby!

He is a sweet and precious little boy and it is such a blessing to be his mommy. I am so thankful for my boys. They melt my heart every day. He has such a fun personality. You never quite know what you are going to get with him each day. He definitely keeps me on my toes! Some days he is pretty low key and "easy" and other days he wants to be held all day. He keeps things interesting. I absolutely love that little boy and thank God for him every day.

Well, there it is! Months 12-16 in nutshell!

Harper

Some of our dear friends welcomed their sweet baby girl Harper into their family at the beginning of this month! This is a painting that I made to hang over the crib in the nursery. (If I can figure out how to posts pics from Facebook, I'll add a picture of it with the bedding later.) It coordinates with the funky floral bedding her mom picked out just for her. I absolutely love the colors in this baby girl's room! Painting is a fun distraction for me and something I have always enjoyed. Every now and then I have time to squeeze in a project like this between fun 4 year old adventures and the sweet busy-ness that comes with our Beckett. My painting has slowed down quite a bit in the past year, but I am hoping as things calm down around here-- especially since I am now getting a bit more consolidated sleep--I will have time to do more and more fun paintings. I am currently working on something fun for Beckett's room that will be bright and cheery and perfect for him.

We can't wait to meet this precious little one. She is absolutely beautiful and such a wonderful blessing to her sweet family. God is good. We love you, Harper--oh, and proud big sister, mommy and daddy as well! We are praying for you and your family during this big and exciting transition. Hopefully, Harper will enjoy this painting for years to come!