First Vacay with 3 Kids

In January, we decided we needed out of cold Colorado and NEEDED some time relaxing as a family away from our day to day. So since Mike is working on his goal of 50 marathons, one in each state, I did a little research and matched up a marathon and cruise and accomplished both within the same trip.

We flew into Houston on Jan. 27th and checked into the Houston Hilton with all three munchkins. We relaxed there and caught up with some friends who happened to end up in Houston after being stationed at McChord with Mike. Then the 28th, Mike got up really early and ran the Houston Chevron Marathon. He was done by 10:30. He showered and we had a car pick us up and drive us the 90 minute ride to the ship, the Carnival Conquest, in Galveston. We spent the next 7 days relaxing, visiting the Bahamas and Key West and spending time with good friends and family. See....we never go anywhere without our own entourage. Trust me when I say Mike and I do not draw the masses but our three little ones do. So we had my parents, Marci and her little family, my grandparents and then our dear friends Mike and Ruben. We had the best time!!! It was much needed time!

The kids LOVED the cruise!!! The boys spent tons of time in the camp because that is where they wanted to be! In Nassau, they requested to go back to the ship and be dropped off in camp. Mike and I did not have any problem with that. So we put them back in camp and then had an afternoon in Nassau with Elliott exploring. Elliott was the talk of the ship. She hit the age cutoff the day we got on the boat, so she was definitely the tiniest on the boat. Typically the boat has over 300 children any given week in the 5 and under age range. The week we went there were 18 on the boat. It was full of old people who could not dote on Elliott more.

We got two adjoining rooms and would highly recommend it to anyone with 3 kids. The rooms on a cruise are not huge so it was nice to have more space, plus 2 TVs, 2 bathrooms, lots of beds, two huge closets. Definitely worth it to get two. We will not do that differently when we go again!

It is getting late, so I am going to call it a night but stay tuned for pictures and more about the cruise. :)

My Oldest Monkey

Caiden is already FIVE! Crazy! I love this age! Caiden is starting to be a little independent but still yearns for attention. The attention he wants is to help, work with us, play games we might actually like, read books together, etc. Much different than even a year ago. Just a fun age.

He is amazing! He just finished preschool and constantly amazes us with how incredibly smart he is. Caid will start kindergarten in a few short weeks, which is astounding! I could not bear to send him all day yet, so he is going to half day kindergarten and he could not be happier.

Caiden has become a fabulous big brother to both Elliott and Beckett. Elliott adores him and he and Beck have a great on again/off again relationship. They like each other most of the time but will bicker like siblings. It is awesome and frustrating to watch both aspects of their relationship.

He is still swimming. Caid now does the freestyle, backstroke and is working on his breaststroke and butterfly. He HATES flip turns and will argue with you if you ask him to attempt them.

Caiden is still my strong-willed kid. My highly dramatic kid. My snuggle bug. My comedian. My green eyed boy. My sensitive boy. My one and only Caiden.

Update on Beckett

Beck has been doing so well! He has been off oxygen for a long time. We still have it here at the house just in case but have not had to use it in a long time. He has been receiving weekly feeding therapy since last August. Unfortunately, my sweet boy is not making any progress in his swallow. We were told that it should correct itself really quickly, like within 4 months. We recently repeated the videoswallow study with no progress at all. Still stuck on honey thick. He had an upper endoscopy done and ph probe placed both coming out within normal limits. We still treat him for acid reflux just so that he does not aspirate on acid. We also had his tonsils taken out and another set of tubes put in his ears because of the constant ear infections and he is now resistant to all oral antibiotics to fight the infections. At our first appointment there the speech therapist seemed to think there was more going on with Beck than I knew to look for. I thought my kid ran funny, kinda cute, kinda quirky. But no, I have been informed that there is more to it. So we qualified for both speech and physical therapy and did those until recently. Speech has been a world of difference. Beck used to assimilate words meaning he would use an ending sound for the beginning sound, cuck for truck, dound for found, gog for dog, etc. Those have been corrected and Beck is coherent. We are taking a break for now from physical therapy to explore some occupational/sensory stuff going on. Beckett falls all the time, like 5-6 times a day. Up the stairs, down the stairs, off the couch, off the bar stools, kitchen chairs, benches, and that is on top of tripping several times a day. So we are exploring that further because they have found that he is hypotonic, meaning has low muscle tone throughout his little body. We have gotten him a set of SMOs. They are supra malleolar orthotics, fancy words for ankle braces. They don't look too bad. He got to pick out the color and stuff, blues with trains and airplanes. And this mom is determined to not put him in orthopedic looking shoes so he rocks DCs all the time. They are up about sock height and just give him some support. They don't help with the falling but the cute, quirky run.



The lack of swallowing progress and hypotonia has landed us in the care of a neurologist. He has ordered blood work and an MRI in July. The neurologist really did not give me much insight to his thoughts other than pointing out what medicine says are flaws, epicanthal folds, wide spread eyes, large ears. The things that I have always found beautiful on Beck. He sent us to a cardiologist who said that Beckett's murmur is unchanged and completely innocent. The cardiologist told me he does not need to see us again unless Dr. R find that Beck has Duchenne's Beckers Muscular Dystrophy. He also felt the need to tell me that this is probably what Dr. R should and probably is thinking for Beck. These are SCARY diagnoses, not anything you ever want to contemplate for your baby. I will not write out what these are. I am trying not to dwell on these. Trying to remind myself we could be dealing with a benign hypotonia. Trying to remind myself that Dr.B is a cardiologist not a neurologist. It's hard! I am holding out till July to talk to the neuro after the MRI. We are not sure if it will show much and know we will have to bring in a geneticist too. Dr. R already said that. So the 12th of July, I am praying for answers for my sweet boy.

Life Has Been Slightly Busy

Busy does not even come close to describing it. In July, we welcomed our youngest to our family, Elliott Juliette. She is amazing! I adore having a little girl in my life. She is such an easy baby! And beautiful! And sweet! And giggly! And ...... The list goes on and on. The boys are fantastic with her. Beckett is still really rough with her but hopefully will one day learn to be more gentle. Otherwise Elliott is going to learn to 1. Deal with it or 2. Cry whenever he comes near her. Caiden can not get enough time with Ellie. He will tell me how little he gets to hold her and how unfair it is. It is really very sweet! Mike is in love! This little girl has him hooked. She grins at him and you can just see him melt.



Elliott is what our family needed to be complete! We are amazed by the blessing of Elliott and honored to be her parents. She is amazing and if you have not had a chance to meet her be ready to fall head over heels in love.

A Caidenism, One of My Favorites So Far

Crazy Kid

So we were driving home from dinner the other night and this conversation transpired between Mike and Caiden. I have no idea what the conversation before and after this was but it doesn't really matter at this point.



Caiden: "Daddy, I am going to put girl jewelry on you."


Daddy: "Okay Caiden."


Caiden: "Then Daddy, I am going to put girl hair on you."


Daddy: "Uh huh Caiden."


Caiden: "Then Daddy you are going to have to sit down to pee."

I honestly have no idea where he comes up with this stuff. I do know that Caiden comes by his sense of humor honestly. His Daddy can take comments like these because they are things his Daddy can come up with on a minute by minute basis.

We Aren't Aspiring to Aspirate

Sounds like some catchy tune, huh? Well this last Monday, Beck was scheduled for a video swallow study so Mike took him. Because of the baby I couldn't go. I feel like I really missed out because Mike said it was really cool. He said Beckett did awesome taking all the different foods and fluids. They laced the foods and liquids with barium and then did a video xray of him swallowing each. He did okay with swallowing foods and could do so safely. Fluids on the other hand, not so much. Beck aspirated on anything thinner than honey. Beckett was diagnosed with Dysphagia and Aspiration of fluids into the respiratory tract. This means that when he drinks fluids thinner than honey, a small amount enters his lungs with each swallow. For Beckett this is a neurological problem that he must "grow" out of. A valve in his esophagus is not timed correctly and doesn't close efficiently. So for now, all drinks for Beckett have to be thickened to what is called "Honey Thick." This includes water, milk, juice, and soups. The thickeners look gross but work really well and at this point Beck hasn't complained other than it was hard to suck through the regular nipples on his bottles. We just had to buy new ones specially made for thicker liquids. We aren't sure how long this thickening will last. I have been told at least 6 months but most likely much longer, probably a couple years. It is frustrating. Things could be so much worse (needing feeding tubes would be an alternative) but it is still hard to deal with everything on a day to day basis. He's such a trooper and that ease the frustration.

Owie!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

A little over a week ago, I was making dinner when Caid walked in and calmly said, "Mommy, I have an owie." I looked over at him as blood was pouring down in between his eyes and down his nose. He had run into the corner of where two walls meet and got a pretty good cut on his forehead. We debated taking him in for stitches but didn't and now it looks fine. It has healed nicely although not shocking but Caid still insists on wearing a Band-Aid on it. He says he needs to protect it so his friends don't touch it. Who knows?

Surgery

Beckett's surgery went way better than expected! We are so thankful! His original date was Jan.15th but his ENT had a family emergency and rescheduled for the 23rd. We went in on Saturday and were admitted to a room. They took us to the Surgery department from there. Mike went into the OR with Beck to see him go under. I from the waiting area heard Beck scream and then not 15 seconds later, Mike walked out. I, of course was wondering what happened but Mike said they put the mask on him as he screamed and Beck went to dreamland. We waited in the waiting room for what seemed like a long time but it was really just over an hour. I think I checked the progress screens at least 50 times in that hour. Then Dr. P came in and said everything went well. She put in the ear tubes, took out the adenoids (which she said were good size), and did the bronch/laryngoscopy. She did not find any cysts or obstructions but did say that it was ANGRY in there, pretty red and inflamed. That is a sign of aspiration or reflux. She is choosing to go with reflux. So she put him on medicine for that.

We got to go back to the PACU where my baby boy was waiting very impatiently. We walked up just as they were giving him morphine and a bottle of sugar water. He was so funny on the morphine. Talk about looped!!! Anyways, his O2 sats were great right after the surgery but we were told that was just because the bronchoscopy opened everything up. We had to wait awhile but were finally taken up to PICU.

Dr. P put us up there thinking respiratory wise, Beck was going to be in bad shape. He really wasn't at all. They took the IV out right away and Beck ate, slept and played all afternoon. He would stand at the sliding glass doors to his room and say Hi and Bye to all who would look his way. Oxygen-wise, his sats eventually decreased to his normal and overnight even lower than his normal. We did have to up his O2 but that was not a big deal. We were still discharged Sunday morning. Beckett and Doggy both with their canulas

We are not really sure what to expect now. Beckett's O2 sats are dipping fairly low when he pulls his canula out. His pediatrician thinks that given Beck's track record, it will be awhile before his sats get normal if they are going to. If we see progress during the days we can test him at night and the final test will be to do another sleep study to see if the central apnea resolved. If we do not see any drastic changes, we could be looking at a tonsillectomy next, a swallow study and who knows what else. We are hopeful that we have some new information so that we can better understand what is going on in our little boy.

That's my little man!

Exciting News Round the Beagley House

Most everybody heard because news like this spreads like wildfire but........we are having another baby. Beckett is going to be a big brother. Everyone always asks the same questions, so to try and answer them all here it goes.

1: Always the first question: Was this planned? No, it wasn't. It was to a complete shock to us!

2: Are you okay with it? Yyyyyyeeeeesss. We are thrilled. I am a little uneasy with the prospect of three kiddos but excited all the same.

3: Are you hoping for a girl? I would love to have a girl. I won't lie. But my boys are so much fun and if I am blessed with another boy, I'm just fine with that.

4: How many kids do you want? I always wanted three. Mike wanted two but was negotiable for a third. Which leads right into question 5......

5: Are you done after this? I think so.

6: When are you due? August 3rd

7: Are you going to find out what you are having? We are. We want to know.

8: Are you crazy for taking yet ANOTHER newborn to a Beagley reunion? Without a doubt.

So there you go. The honest answers to everyone's questions. If you have anything else to ask, ask. I'll answer it.

Update on Beckett-Boo

So it has been awhile since I posted an update on Beckett. He is doing well, a couple ear infections but otherwise okay.

Since my last post about Beck, he had a sleep study done. That was AWFUL. There is no other word for it. They covered him from head to toe in 27 different monitors and sensors while he cried hysterically and then left the room so I could calm him down and put him to bed, where he was supposed to sleep soundly all night. That did not happen. At 6AM, the tech came in, switched on the lights and said "Well it was a successful study. He only woke up a couple times." I looked at him and said, "Really? I counted nine times." A!W!F!U!L!

Well we had to wait quite awhile for the sleep study results. But...the sleep study results were not what we were hoping for. We were hoping for obstructive apnea, adenoids, which is very common in children. It came back as central apnea, very uncommon. Central apnea is a neurological problem where the brain does not signal a person to breathe often enough. The child will have apneas, occurences where they don't breathe for more than ten seconds. It is found primarily in premature babies, abused children, and children with brain injuries/tumors. Scary stuff!!! Beckett had 14 central apneas the night of the sleep study, 47 hypopneas, and NO obstructive apneas. Our pediatrician's take on it was we will be on oxygen long term until the central apnea resolves itself or we come up with another course of action. She wanted to get our pulmonologist's take on all of it though. Well he told her although the sleep study indicated central apnea, he does not think that describes Beckett as well as obstructive apnea. So he wants to go through with the surgery for the ear tubes, adenoids, bronchoscopy and laryngoscopy. He is hopeful that the surgery will work and that Beck could be off O2 by the end of March.

This is good news but I am a little apprehensive. I don't know how you get a test result like central apnea and just discard it as oh that can't be. I guess that is why I pay experts and am not one myself. I am hopeful but am keeping it in the back of my mind that our doctor is still speculating to some degree. Surgery is January 15th. I am scared. I am also hopeful that this will be the beginning of an end to oxygen.

Route 66 Marathon

Well the last post I wrote was about Mike's running and so I feel like I should update and tell everyone that he did awesome. I so wish I could have gone but with Beck having just gotten out of the hospital and all it was better that I didn't. Mike said it was a fun run, which is what I would think if I ran as far as say....the mailbox, not 26.2 miles. But hey to each their own, right? Anyways he finished in 3 hours 46 minutes, almost a half hour quicker than the Denver marathon where he was so sick. He was beyond thrilled with how he did. And I am too. Great job Michael! I love you!

Denver Marathon

So my crazy husband decided that he wanted to run another marathon. After each of the last two, he has sworn to never do another one again. So you can imagine my shock when he said he wanted to run the Denver Marathon. I being the supportive wife that I am asked him if he was sure and reminded him that he had sworn to not do another marathon. He was insistent that he wanted to do another and signed up.He trained and trained for the marathon and felt ready for it, until a few days before. He came down with an awful illness. Supportive me told him it was okay to back out, no need to kill yourself. All those really supportive things. He again insisted on doing it.

Well he ran the marathon and did awesome! He was disappointed with his time but my goodness he ran 26.2 miles sick. I don't run 3 when I'm well. I am so proud of Mike. His new goal is to complete a marathon in each of the 50 states. He has three done: Washington, Ohio, and Colorado. He is running one in Tulsa, OK tomorrow. Good luck baby!

Pumpkin Run

At the beginning of October, Michael, Caiden and I ran the Pumpkin Run here in Colorado Springs. It was the first time I ever signed up and paid to run! Mike did the 10K. Caiden did the half mile and I did the 5K slowly, very slowly. I did run the whole thing and I finished it so that was good. I had fun but have not signed up for another by any means. I think it would be fun to do more of them but I would like to train more so I don't feel like such a slowpoke.

Mike of course finished his 10K amazingly quick and did really well. He enjoys the 10K distance a lot.

Caiden was adamant about his outfit that day. He had to wear running shorts, a long sleeve, and a visor because that's what runners wear. We gave Caiden the choice of running the quarter or the half mile. He wanted to do the half mile. He was the smallest, youngest and cutest kiddo there by far. He finished last but he finished first in his age group. As a prize for finishing he was able to go pick out a pumpkin from the pumpkin patch which was a huge thrill for him.

Update on Bex

So Sunday night, Beckett desatted to 73% but was stable with oxygen so the doctors decided we could go home with oxygen, a referral to an ENT, and more medications. It is amazing how many different things he is on. The pharmacist had me pretty worried when he expressed concern about how many different steroids he is on. I actually had to make up a schedule so I would know what are AM, PM, and as needed medicines.

So Tuesday morning, we saw the ENT. She was very nice and I liked her a lot. She immediately said Beckett needs tubes for his ears. While she does tubes, she wants to remove his adenoids. Mike and I were fully prepared for that. She thinks his adenoids are causing the ear infections, which trigger a fever, which in turn triggers the severe asthma attacks. The ear infections are the main reason for thinking the adenoids are the culprit but we are still not positive because generally the flag for inflamed adenoids is inflamed tonsils. Well Beck's tonsils are pretty small and not inflamed at all. So she is also going to do a bronchoscopy to check his windpipe for size and obstructions while he is out for the tubes and adenoids. We are going to do this in two to three weeks. We are still waiting for a date because she needs to reserve time at the bigger hospital with a PICU. She wants to do it there because the hospital she normally does surgery at does not have the anestheologist she thinks Beck needs nor a PICU. Scary to think she feels the need for the PICU.

Yesterday we saw Beck's pediatrician. She was glad to hear the plan from the ENT but she too was concerned that his tonsils are not inflamed and wants to make sure before we put him under for it. Another concern is that when taken out before two years old, the adenoids will grow back. So we could be doing this again in a couple years. Anyways, she has also ordered a sleep study which will confirm or deny the adenoid theory. We are trying to do this in the next week so we have plenty of time to make a decision about adenoids. Dr. Y seems to think if adenoids are the problem, we will still have to deal with the severe infantile asthma. If adenoids are not the problem, she is afraid we will be on oxygen long term. We are all hoping it is adenoids!!!!!

Sorry for the long post but I know a lot of people wanted to know what has been going on.

Oh no, he's asleep....

He just sounds like he is running a marathon. My little man continues to be breathing really loudly and quickly. I tried breathing 60 breaths in a minute and couldn't maintain it. I don't know how he does. At one point last night his rate was 80 breaths per minute. Crazy!!!! Anyways, last night was rough. I let the doctor know that Flonase keeps Beck wired at night and so we give it to him in the morning. Well that did not get relayed to the nurses who insisted it was ordered and he needed it last night. Well guess who was all smiles from 2AM-4:30AM? That's right, Beckett was! He wanted to play with the blinds, climb onto the window sills, jump on my little couch, and repeatedly put his fingers in my eyes while saying "Dyes." Fun times. Sidenote: I did talk to the doctor about not giving that med to him tonight. :) Bex slept in until 5:30AM, at which point he ripped his O2 out. He desatted to 76% at which I warned by the nurses that we probably would not be going home. Not the news I wanted at 5:30AM!!! Well the doctor came in later and confirmed that she would not send us home when he was that low. He needs to be in the high 80s off oxygen before she would entertain sending him home on oxygen. The day went by pretty smoothly otherwise. It was nice because as soon as I would get tired of being a circus act for Beck, a set of grandparents would show up. Yay for grandparents! So tonight the plan is to try and turn the oxygen completely off. For us to be able to go home tomorrow, he needs to stay above 85% while asleep. We will see. I am hopeful but not confident that he can maintain that. I will post results in the morning.

Happy thoughts

So I feel the need to post about something happier than Beck's saturation levels. Hmmmm.....what to write. Okay, I have one. Quite a few weeks ago, two of my best friends in the whole world, came to town. They both came with their husbands and kiddos. Their husbands are as crazy as mine and were here for the Great American Beer Fest. So we spent the first night at the Rockies/Cardinals game. Then the next morning we took all the kids to the Children's Museum in Denver where the kids all had a ball, running around and playing. We then went back to the hotel and got the guys ready to go. They headed out to the Beer Fest and all of us girls Jen, Alexis, Marci, myself and five kids headed to dinner. We ate at a little cafe where no one cared how loud the kids were, that the kids ate off of everyone else's plates but their own, or how much got dropped on the floor. It was so much fun! Then we walked back to the hotel, put all the kids to bed in one room (they were adjoining) and opened a bottle of wine in the other. We sat and talked and laughed so much and so hard. I had an amazing time with some of my favorite girls. There were more than a few frustrating things that happened that weekend but we will not mention a single one since this is my happy post.

Back at Square One

So last night I posted about how Beck was pulled off oxygen on Wednesday this week, three days ago. Well we are officially back at that square one our doctor warned us about. Beck went to bed with a fever last night and woke up with one this morning. I took his pulse ox and he was pretty low, 81%. So we put his oxygen back on him and kept an eye on him. I called his doctor and spoke with her. She said he needed to be seen so away we went. We saw the doctor who immediately counted his breaths at 56 breaths per minute on oxygen. She was also concerned to see him retracting, using his entire torso to take each breath. So they did a direct admit and now here we sit in the hospital.

The really frustrating thing is that this is EXACTLY where we were 3 months ago, low oxygen, ear infections, fever. And still no definitive answer. We have had to increase his oxygen this time because of how hard he is working to breathe. It is scary to hold your little one and feel him working so hard to breathe. He is so miserable being here. Please pray that we can go home soon.

Good News for Beckett

I have not been good about blogging for awhile but wanted to update what has happened with my youngest. Beckett was put on continuous oxygen back in mid August after being hospitalized for low oxygen saturations and high fever. We had weekly pulse oximeter readings each week through mid October with no change, saturations were in the 78-88% range. So our doctor, being as discouraged as we were, referred us to Children's hospital in Denver. We went up there on October 20th and the doctors we saw were amazing. They started with an echocardiogram and reviewing chest xrays. Heart and lung problems were quickly ruled out and so we focused on his nasal area. The doctor we saw hypothesized that he has airway obstructions, not really sure what that would be. He thinks mostly likely adenoids. He prescribed some steroid drops and told us to keep everything else the same. Which meant we had to keep the oxygen around that we were so hoping to get rid of. We did three weeks of the steroids and then did an overnight pulse ox. Beckett had saturations over 90% (our goal), 98% of the night. So we now as of November 12th, almost exactly 3 months after starting it, took him off the oxygen. Yay!!! We have to keep him on all his medications for at least 6 months as we are not completely cleared of everything. In fact, our doctor said to be prepared to be back at square one if Beck should get sick again. Ugh! So we are praying for healthy days!!!

20 Hours in Phoenix

So we flew to Phoenix from the cruise because that is where our kids had been taken. My parents committed to watching the munchkins and then a surprise birthday party was planned for a dear family friend. It took a lot but they took Caiden, Beckett, and his friend Mr. Oxygen with them to Phoenix for a long weekend. The airlines do not make it easy to carry oxygen. You have to have prescriptions, expensive equipment, letters from doctors, forms specific to the airline, waivers, supplies, extra batteries, the list goes on and on. Anyways they made it there and had a great time. We flew in on Sunday after the cruise and flew home on Monday. Although short, it was fun to see everybody, especially the kids.

Thirty

Mike and I turned 30 a few weeks ago and to celebrate we took a much needed vacation without our kids. That was a first all in itself. Anyways, we spent a week on a cruise with Mark and Mel. It was the most relaxing vacation ever. We really didn't do all that much but that is what made it amazing. We went to Grand Cayman, Cozumel, Belize, and Isla Roatan. Roatan was definitely the most incredible beach I have ever been too. Grand Cayman was pretty and clean, which I really appreciate. Cozumel was Mexico. Lots of people trying to get you to go into their shops by being the most obnoxious and annoying person in any 3 door distance. It is serious competition there to be obnoxious and annoying. We did have a good time at Senor Frogs where my husband was groped publicly by another woman all for a shot of Sex on the Beach. Belize, Belize, Belize....I don't know what to say. The first time we tried to visit Belize we were highly disappointed we didn't get to see Belize. This time, I am torn. I saw a lot of Belize which was probably a once in a lifetime opportunity and we saw some beautiful ruins but I am not dying to go back. Maybe in time. We flew from Tampa to Phoenix for about 20 hours there before coming home. We had an amazing trip and it would not have been possible without my parents who watched our babies. Here are some pictures from our birthday trip.