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!