Monday, July 20, 2015
We've got a Walker
Caleb accomplished a huge milestone this weekend. For the past few months, the boys have said their goal was to see him walk from home plate to 1st base by the end of summer (a month ago, he was only taking one step.). Wouldn't you know, after Jake's final baseball game of the season, we took him on the field, & on the 4th attempt... He did it! All the way, unassisted! I was fighting tears, the kids were elated! We officially have a walker! Woop woop! He has a sedated echo this week so please pray all goes smooth!
Tuesday, April 14, 2015
2 Years Old
Happy 2nd Birthday to our little Buddy! He's finally discovered how great it is to eat. Not just put food in his mouth and spit it back out, but actually chew and swallow! Over the last few weeks, he's made so much progress. I'm working on keeping his meals balanced, which he actually eats better than a few of my kiddos. Due to his dairy allergy, it gets a bit tricky, considering it is in so many foods that we eat. (and of course, he wants whatever the others are eating). So I do a lot of cooking with coconut milk and alternative, non dairy butters (sounds yummy, huh!?) and freeze the leftovers to give to him at later meals to make for easy prep. He likes pancakes, coconut milk yogurt, salsa (eats straight salsa out of a bowl!), spaghetti sauce, chicken, salmon, sandwiches with almond butter or peanut butter, hummus, fruit pouches, fruit- apple slices, mandarin oranges, bananas, and so much more! I honestly am still scared to "announce" that he is eating in fear that he's going to stop. As of this past week, Cardiology cut out one of his four bolus feeds a day. This is a huge step. Seriously, an incredible birthday gift! I've found my stress level is drastically increased, though, since this happened. It's such a different feeling that he HAS to eat. I have to prove that he will gain weight (and sufficient weight). He had a couple of days last week that he didn't do as great, and I secretively got so nervous. He does best when I sit and give him little bites on the right side of his mouth (one bite at a time). He wants to be like any other two year old and have a plate full or stuff his mouth with one bite quickly after another, but that is never effective and he can't handle chewing and swallowing properly and it all comes out. Prayers for continued decreases in his boluses which is the plan as long as he continues this path!!
He loves using his walker to get around. He wants to be outside all the time. As soon as we get outside and in his walker, he beelines it to the path to his best buddy's house, even taking his walker off road a bit with no trouble at all! His other favorite spot is standing right in the middle of the big kids as they play ball. His core is getting stronger by the day and I just know he will be walking on his own soon. He's about taking a step on his own.
We started trying to teach him to hold up two fingers when asked how old are you. He is getting closer. It looks more like the VU symbol so the boys like that!
He uses sign language for a few words, but is learning the words as well. He signs: more, please, go, eat. He says elmo, mama, dada, pippaw, more, please, bo bo, bu bu, ball, dog, and is starting to make a few animal noises. They are all modified but we love his little voice!
My favorite update is so special to me. The kids always talk about how Jesus is in their hearts and I just have always felt a peace in knowing that although Caleb has a half a heart, this boy has Jesus fulfilling his whole heart. A couple of nights ago, as we were praying before bedtime, Bo looked over at Caleb and gleefully shouted, "look, Caleb's folding his hands to Jesus". Although this may not seem huge for a typical two year old, Caleb is developmentally almost a one year old. Without anyone asking him to imitate, he saw the boys and did it on his own and almost made an Amen sound. All I can say is that I know his little relationship with Christ is so much more than we can even imagine!! He continues to bless our lives so much each and every day.
It's impossible to not think often that two years ago from Thursday, we handed over our baby for his first open heart surgery. The boys were playing with my phone in the car yesterday and changing the ringtones over & over. They kept pushing one in particular and the second I heard it, brought chills down my spine, and honestly nausea. It was the alarm I used to wake me throughout the night at the hospital. Sounds such as this, certain smells, thoughts of friends' children in the hospital, bring all the reality rushing back.
Psalms 119:105 "Your word is a lamp for my feet, a light on my path". Just as a lamp helps us see what is right underfoot, we must trust God will take us through the next steps along our path.
We have a lot of doc appointments coming up soon. I don't suspect anything radical, but would be great to just stay at the pace he's on and let his body grow, develop, & hit more milestones before next surgery.
Caleb's Favorite Things at Two Years Old:
Reading Books, especially his Elmo Look n Find
Sesame Street- Elmo
Mickey Mouse
Bathtime
Outside
Balls, Swinging
Watching his brother's play baseball
Going in his sister's room to say night night to a Mickey Mouse figurine
His therapists
Sliding at Therapy
Eating (yippee!)
Blankie
playing in mommy's kitchen cabinets
How Old are you?
He loves using his walker to get around. He wants to be outside all the time. As soon as we get outside and in his walker, he beelines it to the path to his best buddy's house, even taking his walker off road a bit with no trouble at all! His other favorite spot is standing right in the middle of the big kids as they play ball. His core is getting stronger by the day and I just know he will be walking on his own soon. He's about taking a step on his own.
We started trying to teach him to hold up two fingers when asked how old are you. He is getting closer. It looks more like the VU symbol so the boys like that!
He uses sign language for a few words, but is learning the words as well. He signs: more, please, go, eat. He says elmo, mama, dada, pippaw, more, please, bo bo, bu bu, ball, dog, and is starting to make a few animal noises. They are all modified but we love his little voice!
My favorite update is so special to me. The kids always talk about how Jesus is in their hearts and I just have always felt a peace in knowing that although Caleb has a half a heart, this boy has Jesus fulfilling his whole heart. A couple of nights ago, as we were praying before bedtime, Bo looked over at Caleb and gleefully shouted, "look, Caleb's folding his hands to Jesus". Although this may not seem huge for a typical two year old, Caleb is developmentally almost a one year old. Without anyone asking him to imitate, he saw the boys and did it on his own and almost made an Amen sound. All I can say is that I know his little relationship with Christ is so much more than we can even imagine!! He continues to bless our lives so much each and every day.
It's impossible to not think often that two years ago from Thursday, we handed over our baby for his first open heart surgery. The boys were playing with my phone in the car yesterday and changing the ringtones over & over. They kept pushing one in particular and the second I heard it, brought chills down my spine, and honestly nausea. It was the alarm I used to wake me throughout the night at the hospital. Sounds such as this, certain smells, thoughts of friends' children in the hospital, bring all the reality rushing back.
Psalms 119:105 "Your word is a lamp for my feet, a light on my path". Just as a lamp helps us see what is right underfoot, we must trust God will take us through the next steps along our path.
We have a lot of doc appointments coming up soon. I don't suspect anything radical, but would be great to just stay at the pace he's on and let his body grow, develop, & hit more milestones before next surgery.
Caleb's Favorite Things at Two Years Old:
Reading Books, especially his Elmo Look n Find
Sesame Street- Elmo
Mickey Mouse
Bathtime
Outside
Balls, Swinging
Watching his brother's play baseball
Going in his sister's room to say night night to a Mickey Mouse figurine
His therapists
Sliding at Therapy
Eating (yippee!)
Blankie
playing in mommy's kitchen cabinets
A chilly Sunrise Easter 2015
We were so proud of Jake, who celebrated his First Communion. He is a great Christian example for his siblings.
Saturday, January 31, 2015
So Many Likes
As sweet and excited Nicole posted, Caleb has started propelling his walker forward on his own! He began moving forward on his own last week and we turned his wheels to swivel mode this week. He is still very cautious and is figuring out this getting around thing, but now has the ability to be in upright mode which makes for much better scenery! He only lasts a bit because it's a lot of work to hold his body up. He has made so much progress. His lower half is so much stronger. His core is still pretty weak (due to so many surgeries) and is really what's holding him back from walking independently. He cruises around the furniture and every now and then does something that surprises us all- this morning we blinked and he was sitting atop the ottoman. No one claimed to have helped him and he was all grins, as if to say, "Look what I did!". He is making some improvements in his feeding, as well. He is doing continuous munching! He puts a bite of something in his mouth and he chews over and over and may even swallow a bit. He loves his Honey Nut Cheerios, but this week discovered Oreos. He does really well with them (dispute making a tremendous mess). He's swallowing some water- not really measurable yet. Slow steps forward, but progress none the less!
He's been fighting the ear infections, in spite of the tube surgery early December. He's had an ear infection, strep throat diagnosis, and another really bad ear infection since. He hardly gets off antibiotic before another hits. His tonsils were a plus three mid January. They are going to follow that situation over the next few months-- prayers they go down!
We had an appointment with CADET clinic last week (Complex Aerodigestive Team).- GI, Pulmonology, ENT. They work with chronically ill children with complex airway problems. They are looking at the big overall pic. He constantly sounds like he needs to clear his throat. We aren't sure what this is from. He's also on high doses of reflux meds, allergy/ asthma meds and hopefully the team can determine the most effective plan for it all.
We are making a valiant effort with a blended diet. We tried this back in October, but ended it after a couple of days of epic failure. He projectile vomited every feed. The diet consists of same formula (Elecare Jr. mixed to a higher calorie (45 calorie, compared to his normal 30 calorie), with rice cereal, olive oil, sugar, baby foods. The benefit is that it is heavier in his stomach and shouldn't slosh around like only liquid would. So far, he's tolerating this attempt great. It unfortunately feels like I'm pushing syringes of a yucky gunk into his Gtube way too often. He also has to have a specific amount of free water through his tube. He doesn't like sitting still during this. It takes a lot of distraction. We keep telling him to eat more and we won't have to do this!! He's done great with the diet so far… until today. He woke fine but by about 9:00 started acting odd (honestly, we worried he was seizing). After acting out of sorts for a bit, he started throwing up and could hardly stop for hours. We couldn't figure out why this occurred but I stopped regular feeds, started pedialyte regimen, and held him without moving for hours. By mid afternoon, he made a turn for the better and had a fine rest of the night. These are the days I despise-- Not knowing how long is too long to wait at home vs. rushing to hospital. Feeling like I'm "playing doctor"with feeds on a child that can get dehydrated so, so easily. Ugh….
Just want to digress a moment. As I just saw the video of Caleb propelling along and then noticed how many "likes" it received, I had that WOW moment. We are so blessed every moment of every day to see the true miracle, or as RuthAnn wrote, a "true walking miracle"- almost- that he is. I hope that all our family and friends know that we don't take for granted that he is God's child, & we are so blessed to be his parents--but a part of so many people's life, via prayer and love, for some huge gigantic plan that only God knows. It is indescribable to be on this side of seeing the outpouring of happiness from others. It feels like a huge hug. And let me tell you, that huge hug is so needed. All of these updates are incredible and show the progress he is making, but they come from a lot of therapies and doc appointments. We are blessed with an amazing team that love him so much and work so hard to get him where he is. Not one day goes by that we aren't praising God for everyone that loves Caleb, works with Caleb, but also those that love our family. The hugs, notes, messages, likes, etc. get us from day to day and help us see the wonderful little and big things that can easily be overseen when going through the motions of daily routine.
He's been fighting the ear infections, in spite of the tube surgery early December. He's had an ear infection, strep throat diagnosis, and another really bad ear infection since. He hardly gets off antibiotic before another hits. His tonsils were a plus three mid January. They are going to follow that situation over the next few months-- prayers they go down!
We had an appointment with CADET clinic last week (Complex Aerodigestive Team).- GI, Pulmonology, ENT. They work with chronically ill children with complex airway problems. They are looking at the big overall pic. He constantly sounds like he needs to clear his throat. We aren't sure what this is from. He's also on high doses of reflux meds, allergy/ asthma meds and hopefully the team can determine the most effective plan for it all.
We are making a valiant effort with a blended diet. We tried this back in October, but ended it after a couple of days of epic failure. He projectile vomited every feed. The diet consists of same formula (Elecare Jr. mixed to a higher calorie (45 calorie, compared to his normal 30 calorie), with rice cereal, olive oil, sugar, baby foods. The benefit is that it is heavier in his stomach and shouldn't slosh around like only liquid would. So far, he's tolerating this attempt great. It unfortunately feels like I'm pushing syringes of a yucky gunk into his Gtube way too often. He also has to have a specific amount of free water through his tube. He doesn't like sitting still during this. It takes a lot of distraction. We keep telling him to eat more and we won't have to do this!! He's done great with the diet so far… until today. He woke fine but by about 9:00 started acting odd (honestly, we worried he was seizing). After acting out of sorts for a bit, he started throwing up and could hardly stop for hours. We couldn't figure out why this occurred but I stopped regular feeds, started pedialyte regimen, and held him without moving for hours. By mid afternoon, he made a turn for the better and had a fine rest of the night. These are the days I despise-- Not knowing how long is too long to wait at home vs. rushing to hospital. Feeling like I'm "playing doctor"with feeds on a child that can get dehydrated so, so easily. Ugh….
Just want to digress a moment. As I just saw the video of Caleb propelling along and then noticed how many "likes" it received, I had that WOW moment. We are so blessed every moment of every day to see the true miracle, or as RuthAnn wrote, a "true walking miracle"- almost- that he is. I hope that all our family and friends know that we don't take for granted that he is God's child, & we are so blessed to be his parents--but a part of so many people's life, via prayer and love, for some huge gigantic plan that only God knows. It is indescribable to be on this side of seeing the outpouring of happiness from others. It feels like a huge hug. And let me tell you, that huge hug is so needed. All of these updates are incredible and show the progress he is making, but they come from a lot of therapies and doc appointments. We are blessed with an amazing team that love him so much and work so hard to get him where he is. Not one day goes by that we aren't praising God for everyone that loves Caleb, works with Caleb, but also those that love our family. The hugs, notes, messages, likes, etc. get us from day to day and help us see the wonderful little and big things that can easily be overseen when going through the motions of daily routine.
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