Speech Therapy
Greetings to all.
Xavier met with his speech therapist, Miss Robin today. This was Xavier's fourth visit. She was ecstatic with his progress!
As in the previous sessions, she asked us, the parents, how things are going? are we feeding Xavier in his high chair? what types of foods is he eating? is he taking purees yet? The whole battery of questions (always with a heavy focus on purees. I swear; I don't know how the Human race made it this far without the Magic Bullet). After that, we fitted Xavier with his full-body bib and let him model it for Miss Robin, who has wanted to see these in action since we told her about them. We then set Xavier into the evaluation chair clamped to the evaluation table (a small, round table about one foot high)
Starting with dry foods like a cheese puff and some yogurt drops, Miss Robin worked up to Xavier's favorite: vanilla pudding (from a snack pack lunch size). She was able to feed Xavier most of the pack with a spoon. Xavier swallowed about a quarter of the pack. What he lost, he lost because the spoonful fed into his mouth had too much on it, or the spoon did not get far enough back in the mouth.
Eating a quarter of a snack pack of vanilla pudding fed by a spoon is awesome! Miss Robin has not been able to get in touch with Dr. Abbey (they've been playing phone tag). I made the comment "It's a good thing you haven't got hold of Dr. Abbey until this." Miss Robin expected to leave a glowing report for Dr. Abbey on Xavier's progress.
We still have some work with the spoon feeding, but Xavier not once pushed the spoon away or gave the clam mouth, or guarded his face. When Xavier was finished, he made it clear he was done eating and wanted his bottle. This is great progress!
That's about it. I thought today's meeting was blog-worthy. Thank you for your prayers; I've just described another one of the answers! Great is our God!
Weight Check
Greetings to everyone.
Thank you all for your prayers. Xavier had his weight check today. This was a "special" weight check; surprisingly, no length measurements were taken. Dr. Abbey wanted to see how well Xavier was doing rather than take Rebecca's word for it over the phone. As previously noted, we denied the three suggested surgeries and the liver biopsy, which agitated some doctors and made other doctors nervous.
Dr. Abbey performed a simple exam and asked us a number of questions while taking note of our answers. I think his greatest surprise was the revelation we engaged a chiropractor; Dr. Abbey seemed concerned that the chiropractor may have prescribed pills or drugs rather than just simple adjustments.
In the end, Dr. Abbey was still a little cautious about Xavier's weight gain. He did note that Xavier looked better and showed more life in his eyes, and liked how active he was. We asked if we could change to regular formula, but Dr. Abbey thinks not yet. He does not want to change Xavier's primary source of nutrition just yet. Dr. Abbey was not able to answer the question of how many calories per day are appropriate for Xavier, however, so we are still shooting from the hip. Xavier has been averaging 600 calories a day from the time we started keeping track. Dr. Abbey will speak with Xavier's speech therapist, Miss Robin, as a follow-up on the exam.
So, what did Xavier weigh in at? Not what our bathroom scale has suggested, for sure. Xavier has gained 20 ounces from his one-year checkup in mid May, bringing him up to 14 pounds 4.4 ounces.
A few hours after Xavier's weight check, Rebecca and I left him in the care of a babysitter, then went on a date. Rebecca had never been to Casa Bonita, a local landmark and something of a rite of passage. It has been some 25 years since I was there last. The ambiance has greatly changed; long forgotten was its original charm and uniqueness when it opened 40 years ago. Still, we had a fun time, and Rebecca can say she has had the "Casa Bonita Experience."
The famous fountain outside Casa Bonita. Of course, the experience would not be complete without a photo of Rebecca with the fountain in the background. On the right, Rebecca has just finished her meal. Not clear in the background is the waterfall and the twinkle-light lit palm trees.
With Xavier (and parents) learning the proper way to eat "age-appropriate food textures" (I used quotes here because my keyboard doesn't have a "roll-your-eyes" character), things can get a little messy. Rebecca found these long-sleeve, full-body bibs with a food-catching pocket and purchased a couple. No more do we need to hose Xavier down after a meal, we just need to hose down the bib! At 14.25 pounds, Xavier has a double chin and chipmunk cheeks. Under the bib, he's developed a bit of a belly also.
USAF Thunderbirds
Greetings to everyone!
Today began mid afternoon yesterday for Xavier. He took his second trip out of state where he visited the great state of Wyoming. His first trip out of state was also to Wyoming just a couple of weekends ago. He and Dad joined Mom at her annual Wing Picnic.
This trip, however, was to see the USAF Thunderbirds perform in an air show. Rebecca scored a great hotel room on base, and we joined her there in the evening (Rebecca was already in Cheyenne doing work for her new position with the WYANG). The room we had was the last one available, which is why Rebecca made the reservation two weeks ago! It was a three bedroom apartment, having a nice family area, office, kitchen and dining area. There was no sneezing at the $62 a night either!
Xavier proved difficult to put down (we bring his Pack-n-Play to use as a crib). He fought and fussed and squealed for quite a while. Then, victory was ours! For about :30 minutes. Rebecca and I were watching TV when she asked "Is that sound the TV?" We muted the TV and heard the fire alarm weakly screaming down the hall of the building.
We got Xavier up, loaded our pockets with car keys, room keys and base IDs, slipped on some shoes and headed outdoors. We learned a valuable lesson over the next :45 while the firemen cleared the building (it was a false alarm, a glitch in the wiring. The alarm was the fourth false one that week). Our lesson: while loading your pockets with other stuff, grab the baby supplies on your way out the door as well. Bottles and diapers a good idea to have on hand.
In the morning (Xavier went down the second time after the fire alarm event with as much fuss as the first time we put him down), we went to breakfast, then off to see the Thunderbirds. Due to the overcast sky, the show was delayed an hour, but it did go on.
Xavier did not know what to make of it all, but watched the planes go by. He definitely did not care for the times when the planes were loud. He covered his ears with his hands and looked to mom or dad with a worried look on his face.
After the show ended, we spent the rest of the day on base. The WYANG held an open house as part of the Cheyenne Frontier Days. A bus picked us up at a nearby mall and took us onto base (the base was closed to all other traffic, including the on-duty personnel; walk on or bus on were the only means of getting on base).
They had an Army bridge builder machine, mobile airfield RADAR, helicopters, C-130s, firetrucks and the parked Thunderbirds, to name a few attractions. As we toured, I thought into the future when Xavier would be old enough and mobile enough to crawl over the equipment as the other children were doing. I look forward to that day!
We also took a stroll to see the hangar Rebecca managed the remodel of while working full-time with the Guard. It's really coming together nicely. Rebecca did a lot of the ground work for the project to proceed so well. We also visited Rebecca's new office.
Rebecca and Xavier watch the Thunderbirds, still off in the distance, approach in formation for a low fly-by. We had not yet heard the very loud engine noise which Xavier did not like; that would be several minutes from the time of this picture.
Father and son pose with the Thunderbirds parked in the background. Xavier did not recognize them now that they were so quiet and still.
Waiting in line to view the cockpit, we got to see the inside of the C-130 in all of its splendor. It was while traveling to Andrews in a C-130 back in late October 2012 that Rebecca felt bloated and could not get comfortable. It was because she was two weeks pregnant, but we didn't know it then! I explained this to Xavier, who continued to look around the plane while adding that knowledge of his early life to his understanding.
Mom and Xavier pose on a bench in the C-130. For the tour, two rows of seats were removed, so there is a lot of room in this photo. Xavier, who has been dragged around all day, doesn't know what to think. He is wanting to get back on the floor and crawl around more.
Xavier Meets His Speech Therapist
Greetings and hello to everyone.
Xavier had a busy day today. Beginning about 04:30 AM, he was up and ate, then fussed until he went down about 05:30. Up again at 07:30, he played and ate. Come his 09:00 nap time, he wholeheartedly refused to sleep, and stood in his crib squawking for :45 minutes.
After having about :20 minutes of nap, he was awakened, dressed, put in his bucket and driven to meet Robin, his speech therapist. This meeting was very encouraging (unlike the feeding clinic meeting a month ago). Robin was excited about his food skills (apparently, she sees children with far worse habits such as not wanting to touch food at all because it's too messy).
She gave us some pointers on how, when and where to feed Xavier. She also took down our goals we want her to help us accomplish. We will actually get Xavier into an eating regime, which will also help settle him down she believes, even to the point of sleeping better. She did warn us that it will take two or three weeks of endurance for us parents as Xavier will rebel against the changes of eating whensoever the spirit moves him. Of course, we will be working him into the schedule rather than cannon balling him into it overnight.
Two other interesting things came from this morning's meeting. I asked Robin why a speech therapist was chosen to help Xavier learn to swallow and eat. She explained that speech therapists are the only specialists who study and work with the mouth, so they get the problem eaters also.
The second item we discussed was the connection between eating solid foods and speech development. She told us that when children begin eating more solids, their speech skill progresses faster in proportion to their taking in solid food. She told us there are no studies backing this up, but it is well-known in the trade.
Overall, we are excited to be working with Robin. Xavier will meet with her once a week for some time.
Not only did Xavier meet his speech therapist, but Rebecca signed him up for mother-child swim lessons at the pool just up the street. Rebecca has been thinking about this for a while and today went into the rec center to ask about classes. As it turns out, the last class of the season began today, and they had one opening left. Rebecca signed up.
After leaving the rec center, Rebecca had some shopping to do. A new suit for her, swim trunks, a sun hat and special diapers for Xavier.
Xavier shows off his special swim diapers. He has a set of swim trunks he wore over this diaper. They sport caricature shark prints.
Xavier loves baths, so he should love swimming in a pool, right? Wrong! He tolerated it up to the point the class did the dip under the water maneuver. After that, it was cries, tears, frustration and a generally disagreeable demeanor. His sun hat mom bought him, however, made all the parents coo and aah when she put it on him. It has two eyes and a little shark fin on top.
A Day of Culture
Greetings to everyone.
Xavier's Great Aunt Mary Jo likes to visit places in the cities she travels to. She had heard there were Mrs. James Ward Thorne miniatures on display. So, we all went down to the Denver Art Museum. We found no such display, but still we had a good time. Xavier came away feeling more cultured, especially after surviving a foam building block battle which raged around him in a children's interactive room.
A bridge connects the two museums. At one end of the bridge is an interactive room for children. This one had a large area with a number of foam blocks. The challenge was to build a replica of the museum from these blocks. Few kids did that. Most built forts, or as is the case when we sat there, broke out into a giant pillow fight. Xavier let Dad build a few towers while he practiced knocking them over.
There was an exhibit lit with red lighting. It was set up like a restaurant or cafe. The tables had red table linen, and red chairs and all the table settings were red. Foxes leapt or sat or slunk about. What is shown above is a very small slice of the exhibit. The camera's flash reflects in Mom's and son's eyes, something of an appropriate image for the display behind them.
While Aunt Mary Jo and Chellie looked over the offerings at the museum's kitsch shop, Rebecca took Xavier over to play in the fountains. He really did not like when the fountain shot up high, but he enjoyed the fountain when it was more his size. We also learned the amazing fact of just how much water a diaper can hold!
Xavier Meets a Great Aunt
Greetings to all; Happy Fourth of July!
This time last year, Xavier was still in the NICU. Rebecca and I visited him early in the morning because we knew we would not see him for one or two days. It was the first time he went without seeing his parents for more than a day. (We had to pack up the Northern Outpost is the reason we were away).
This Fourth of July Xavier got to meet with his great aunt, Mary Jo. Though a whirlwind visit of only two days, still it was a wonderful time. In keeping with the tradition we set into motion last year at this time, Rebecca and I left Xavier in the care of Mary Jo and Chellie, and we snuck off to have a morning to ourselves. We enjoyed breakfast together and a long walk in the mountains along Bear Creek. We were back before lunch, however.
Xavier's Great Aunt Mary Jo, poses with Xavier, who was too fast with his happy smile to be caught on camera.
Feeding Update
Greetings to everyone.
A quick update on Xavier's eating issues. The doctors scheduled a liver biopsy, a Nissan Procedure and the nasal feeding tube (all at the same time), then called us to let us know about it. We said no to all three, which did not set well with the surgeons. About a week later, we called and cancelled the GI tube surgery as well. None of this was the right path; it would have caused more harm and bigger problems, while solving none of the current problems.
In the last month and a half, Xavier has gained somewhere between one and a quarter and one and a half pounds! (Yes, shout Hallelujah! Thank You, Jesus!).
It has not been an easy road; Xavier has had his first chest cold during this time, cut two more teeth, and is just getting over another respiratory infection. (This last infection has been a serious snot producer. Several times while using the blue booger sucker Rebecca has almost lost her stomach content, and I have gagged at what I saw at least once). We have also had to keep to a tighter feeding schedule. As Xavier took in more daily volume, his hunger to eat more increased. He started waking up two or three times a night wanting to be fed (again, shout Hallelujah!). When his nose and sinuses are unplugged, he sucks down 3.5 to 4 ounces at a time with extreme prejudice, especially in the afternoons! That, by the way, is up from his 1 to 1.5 and sometimes 2 ounces before, and that required vast effort to accomplish. We rarely need to swaddle him any more.
In this same six weeks, Xavier has gone from averaging 13 ounces (on a good day) to the high twenties. He even did a day recently where he took in (and kept down!) 35.5 ounces. It is still hard to baseline where he is at because the teething and two bouts of illness throw the numbers off, but we think when the last of the snot clears, he will be back to 30+ ounces a day (we can't say Hallelujah enough!)
He is a much happier baby, if you can believe that (he's always been happy, but now he is super-charged happy). We are much happier parents (even when we are up with him two or three times a night again). With his new surplus of energy, we are also having to relearn how to get him to go down for the evening.
What a difference a month makes! Thank you all for your prayers, they have a large part in bringing Xavier to this point. Dr. Abbey wants to bring Xavier in for a weight check next week. I'm hoping Xavier will clock in around 14.75 pounds. That's so doable from where we sit today.
We still are having problems getting Xavier to eat from a spoon and to accept a tooth brush. He is getting less guarded about his mouth, but there is still much work there, it seems. We are hoping the OT and the speech therapist will be able to make great strides in this area.
My First Day at the Zoo
Hello to everyone.
We took a family day today. After Xavier woke from his 9:00 o'clock nap, we headed off to the zoo. We began our day with a picnic in City Park, then spent a couple of hours strolling several of the animal exhibits.
Just before going into the gardens, we thought it best to feed Xavier. He ate some at our picnic, but was too distracted to take a whole bottle. Rebecca got another 2 ounces down him with this cloister technique.
Rebecca's favorite animal to see at the zoo, this was our first stop. Xavier was not too impressed. It took him a while to warm up to the giraffes. Later, after we put him back in the stroller, we at least got a smile.
Leaving the giraffes, Xavier did his signature flappy bird wave at dad. Excitement started to kick in.
During the (extremely lame) sea lion show, Rebecca took Xavier into the Tropical Discovery. (I stayed behind to watch the stroller as they are not allowed in the exhibit). Of all that he saw today, this definitely was where he showed the most curiosity. He even got to crawl into the bubble under a turtle tank and watch the turtles swim above his head.
Xavier found some interest with the penguins outside. Once we loosed him from the stroller's seat belt, he was standing at the rail in a flash to watch several birds swimming in the pool below.
The flamingos were his favorite outdoor exhibit. They were colorful, active, and quite loud. Also, we could stand in the shade. The day was very pleasant temperature-wise, in the mid 70s, but the shade was still welcomed as we neared the end of our touring.
Xavier wears his new hat, which we bought prior to touring the exhibits. Everyone was tired leaving the zoo, we probably stayed too long, and we had a long, long walk back to the car. The place we found to park was exactly opposite the zoo's one entry/exit (what happened to the one-time "South Entrance"? We parked right outside where it used to be). Coming and leaving, we completely circled the gardens.