Oh...you mean me? Ha ha!
Yes, it’s been a while since my last post. I’ve often thought about posting pictures or writing a simple update on the boys but something pressing always took over and it never happened. I did start a blog post in August, but it was never finished or sent. I know that many of my fellow blog followers do see pictures of the boys and my family on my facebook page. At this point, I’m not sure who else is actually following our little blog anymore. But it continues to provide a journal for the boys and has been a nice resource for us. So until I find it completely useless, I will continue to blog as time and effort allows!
I know I said I’d post some pictures from our first road trip with the Bubbies, so that will be my priority. First I will update you on the boys’ medical and other progress since the last post.
Parker:
Parker is almost 100% oral to date! I say 100% oral because we are not gavaging ANY formula feeds. He is eating and drinking 100% of his daily calories – woooo hooo! BUT he isn’t really 100% oral because he continues to receive his pre and pro-biotics via G-tube and periodic prune juice or water gavages if he isn’t remaining “regular”. And of course we happily shove ALL of his medications through the tube when that becomes a necessity – the main benefit of having this type of access. Don’t parents of G-tube dependent children deserve some sort of ease is this regard? Ha ha! The BIGGEST accomplishment for Parker is not just that he’s eating solely on his own but that he’s eating without the use of appetite stimulants. A couple of months ago it became clear that Parker hit a plateau in his eating and we were either going to have to increase his dosage or discontinue it altogether. The drug made Parker sleepy and cranky – I couldn’t justify increasing his dosage when his eating issues were behavior-driven. So the decision was made to take him off the drug completely. The result: no change in eating; huge change in personality. It was as though his dimmer switch was cranked up. His dark, morose, and passive disposition became active, engaged and almost cheery. Parker is still Parker, don’t get me wrong. But what we didn’t realize was how tired and passive the drug was making him. After discontinuing the drug, Parker began verbalizing and participating more. We are so glad we decided to take him off the drug. It did what it was supposed to do – make him “feel” hungry. He’d never known that feeling before, so it was a necessary thing. But now it is time to move on and let him find his own normal eating habits/patterns.
So that’s where we are with Parker – he’s finding his new eating “normal”. His weight has been hovering around 26 pounds for the past month or so. Both he and brother have gotten taller so he’s really slimmed down. But the GI believes that when Parker’s body is ready to grow again and he NEEDS more food, he’ll begin eating more. We’ll see. The boy just doesn’t have a great interest in food and continues to eat because we request it, not necessarily because he wants it. Although there are those shining moments when he points to his highchair or the fridge and jabbers in his secret Parker language, “I am hungry”. These are mommy/daddy heart-warming moments when a whiff of “normal” blows by…ah, the smell!
Tyler:
Well, what ride are we on today? If Tyler were a roller coaster ride, he’d be the old wood one in Santa Cruz. You know the one that hasn’t changed in YEARS! Argh! The theme is…two steps forward, three steps back! A couple of months ago we thought things were looking up – fewer and fewer throw ups, resolved ulcers, no signs of reflux. As things were looking better and better, we began discontinuing Tyler’s reflux medication. No change was detected. We slowly began giving him larger boluses during the day, trying to increase his feeds. The goal is to eventually have Tyler emulate a regular food schedule - eating during the day and NO eating at night. Getting him off of his nighttime pump is a priority. We thought everything was going well when Tyler began throwing up again. We not only had to go back to many smaller gavages during the day but also put him back on his reflux medication. So we’re back to square one and holding steady.
The GI sent a referral to a doctor specializing in pediatric feeding disorders. The testimonials I’ve read from clients who’ve received her services have been overwhelmingly positive. Our neighbor has twins who are two years older than the boys and were also micro preemies. One of her boys receives services from this feeding group. The mother, Jen, says that her son, Aaron was barely eating purees when they started a year ago. Now he is eating almost all foods. It is an intensive in-home program that works. The only problem - will my insurance pay for it? Jen had to switch insurances and medical groups to get this feeding therapy on board. She switched EVERYTHING: pediatrician, gastroenterologist, pulmonologist…eek! This is how important this is – she had to do it or he wouldn’t be eating on his own today! So the referral has been submitted for Tyler and the doctor told me that Anthem Blue Cross has not been easy to work with lately but she’ll do her best with our request! I feel a battle brewing…I’ve been through this before! Wish us luck!
Tyler has had a rough week. We thought he caught a chest cold because he’s been throwing up with almost every gavage, started waking up periodically throughout the night, coughing and sometimes throwing up – and will throw up flemmy liquid that seems to be coming up from his lungs. We now suspect that Tyler’s ulcers could be back. Ugh. This would not be good. The last time he had ulcers we noticed severe reflux and lately his reflux has flared up again. Just slap my head now please – doh! So, I have been getting next to NO sleep at night because Tyler has been tossing and turning throughout night. I feel bad for him because he isn't getting a good night sleep either. John has been working like crazy because of homecoming this week and hasn't been around - and Parker has been waking up because of his brother! So we're a household of tired Thompsons!
Good news: next Tuesday we see the GI and will be able to discuss Tyler's symptoms with her at length. We really need to figure this out! Tyler certainly is a Neverending Story!
Good news:
The boys passed their Ophthalmology appointments with flying colors and were cleared of any signs of ROP (Retinopathy of Prematurity). The Ophthalmologist told us that she’s been working with UC Davis for six years and has never seen such a high number of clean ROP cases coming out of a NICU. Although we knew and saw that the boys were getting optimal care at UCD, it made us feel wonderful hearing that.
Fun Facts:
Tyler’s speech is coming along and he is talking in gibberish sentences, while peppering in usable words. It’s quite cute! He often starts out his answers with ‘no’, even if the answer is yes. His mimicking is spot-on, he now has to work on chaining his words to complete sentences. By the end of his last speech therapy session he was chaining “I want bubbles please!” It was music to my ears! And today he ran in the house yelling, "mommy! mommy! mommy!" Every syllable as clear as can be - no lisp detected. At the last consignment sale, I sold a bunch of the boys clothes and purchased some winter attire. One of my goals, besides buying clothes, was to find something for Tyler that just couldn't wait for Christmas – a drum. Drumming is Tyler’s passion – and his use of pencil drumsticks with furniture drums has been working out nicely. I was thrilled to find a complete Parents Choice drum filled with musical instruments for $9 and a single drum for $3! So a band has formed at the Thompson house and periodically Barney joins us! It’s pretty “sick”…take that however you’d like! Ha ha!
Parker’s speech remains a mystery although he talks wildly and passionately. He is so observant and loves pointing stuff out to us all the time – we just wish we knew what he was talking about! I’m sure his descriptions are much more colorful than mine! I am proud to say that I can decipher some words like “Barney”, “Gabba”, “daddy”, “mommy” and “bye”. Because we are all such idiots and can’t understand him (according to the look of disgust on Parker’s face when we don’t understand him), he’s gotten very good at sign language – real signs and his own, made up language. His comprehension is excellent, in fact he’s been pulling his poopie diapers off lately so we’re going to try putting him on the potty and see what happens. Any suggestions are welcomed here! On a less serious note, Parker has become much more physical and independent lately – it’s been nice to see. We finally visited a fairly new park in Roseville created exclusively for 2-5 year olds. It’s fully fenced in, the play equipment is low and safe, and the grounds are entirely rubberized. The first time we visited this playground, Parker explored like the “free bird” I’d never seen before. He climbed new heights on the multi-tiered structures, slid down slides face first, and tackled the swings solo. All big steps for this anti-change agent home body.
I think that’s a pretty good update! If I were better at keeping up with information, these posts could be shortened! Ha ha!
Here are some pictures of our summer fun - the more updated pics are found in the new header above. The boys two-year old pictures were hilarious and spot-on stills of their personalities! The I-Phones were the only way to keep two 2-year olds in the same spot, but it worked! I do have some other pics that I'll post at a later date. It took me three days to get this post together - eek! I just need to gett'er done at this point! Enjoy!
Saturday, October 16, 2010
Summer Water Fun!
The boys had such fun this summer playing in the water. Sometimes they'd wear official Elmo water-proof diapers, sometimes commando and other times a "spontaneous jump in the blow up pool or hose with whatever you're wearing" was necessary. They just loved it! One of their favorite activities was an elaborate water-activity-blow-up-thingy the boys got from their uncle Mikey and auntie Velear. Here are some funny pictures of their adventures playing in this darling water feature!
Tyler was immediately drawn to middle and stayed there the first time we pulled this out. He was loving it!
Tyler was immediately drawn to middle and stayed there the first time we pulled this out. He was loving it!
Look at his funny face - Tyler's pure bliss!
Drink please!
And then there's brother Parker who couldn't bring himself to step ONE foot in the water feature. Here he is explaining to daddy the risk involved in such an activity. I think he's also worried that the original nozzle (he's holding) may not make it back onto the hose. VERY big concern!
Oregon Wedding
Our first road trip with the boys was a blast! My little brother, Mikey and his wife Velear were married in Oregon in July. It was our first long drive and staying in a hotel with the boys as well. Thankfully we over-packed because we ended up needing EVERYTHING! The weather changed from warm to cold and our eating child, Parker, decided that he'd rather give up food while vacationing. I guess eating just wasn't on his agenda. Thankfully I am married to a very smart man who thought this could happen and packed Parker's feeding pump and enough extra formula and supplies to sustain BOTH boys the entire trip. Whew...we needed that!
The drive was interesting - we left late at night and drove straight through from Roseville CA to Tigard OR. Actually, my husband drove straight through. I was the "talk and keep husband awake" person and navigator. The boys were fabulous in the car - they slept most of the time. At the hotel we reserved a mini-suite so the boys were able to have their own room. They were a little freaked out about the sleeping arrangements - we brought co-sleepers for them. But I think they were just so tired from the day's activities that they fell asleep pretty easily each night. John and I feel pretty lucky because the boys are really good guys. They are very well behaved and looking back, didn't give us any problems whatsoever.
I love this family photo (good one Katie Rose) - except I wish I didn't have the glass in my hand!
The drive was interesting - we left late at night and drove straight through from Roseville CA to Tigard OR. Actually, my husband drove straight through. I was the "talk and keep husband awake" person and navigator. The boys were fabulous in the car - they slept most of the time. At the hotel we reserved a mini-suite so the boys were able to have their own room. They were a little freaked out about the sleeping arrangements - we brought co-sleepers for them. But I think they were just so tired from the day's activities that they fell asleep pretty easily each night. John and I feel pretty lucky because the boys are really good guys. They are very well behaved and looking back, didn't give us any problems whatsoever.
I love this family photo (good one Katie Rose) - except I wish I didn't have the glass in my hand!
Waiting for the wedding to start - Parker is needing his mommy. To pass the time we are doing Parker's favorite thing...playing on mommy's phone.
This is an amazing picture because we rarely see Parker out kicking a ball! Here he is at the wedding running around kicking a ball - are you kidding us? What a shot!
So cute of Tyler and the beautiful bride - Auntie Velear!
Tyler "Elvis" Thompson! Okay, so I know Tyler loves to dance at home in front of the TV during his morning shows, BUT...I NEVER knew Tyler was such a dance machine on the dance floor! Holy smokes! The music begins to play, everyone converges onto the dance floor, someone has my child (right?) and I hear "Wow, look at Tyler go!" I look out onto the dance floor and there is a circle of people gathered around the middle of the dance floor and in the middle of the circle...one Tyler Thompson dancing his butt off! I've never seen such pure joy is Tyler's face. I think he danced and laughed and smiled for 4 hours straight! John had to pick him up off the dance floor when he was leaving for the night! The kid was a dance machine I tell you!
Washington Trip
After the wedding in Oregon, we packed up the bubbs and headed to the Klein household in Washington where we spent time with old friends, their 5 acres and many animals. The boys had so many new experiences on this trip - including the following:
The dog was probably their favorite Washington activity. Here is Parker stuffing dog's mouth with toys...
The dog was probably their favorite Washington activity. Here is Parker stuffing dog's mouth with toys...
...and Tyler pulling dog's tail...
...and Tyler having "words" with the dog (wow, the passion in their conversation)...
...and finally Parker trying to find dog through dog's special door!
Parker had the pleasure of experiencing his first face plant on the Klein's dirt road. Mommy had her first heart attack as she picked up a crying Parker whose faced was filled with blood and dirt and couldn't tell from where it was coming! The injuries totaled an egg on the forehead and a bunch of bad looking surface scrapes on his face. He actually healed within the week - whew!
Thompson Bubbies took their first boat ride! Tyler is looking fresh and ready to jet here, but then...
...zzzzzzzzz....what happened? Mr. Tyler zonked out during the boat ride! How cute is that? I guess water skiing was out!
Did I mention the Klein "toys"? Yep, the boys also road on their first four-wheelers! Okay, they were going VERY slow down the driveway.
Of course we can't forget the bawk bawks! Here's a great pic of Parker with the chickens (yes, they get pretty close) but Tyler was ALLLLL over them! He couldn't quit talking about the "bawk bawks"! The first night we arrived, we went out to watch the chickens being fed. Tyler was so excited about seeing chickens running around. He had a "Tyler ah-ha moment" and decided to take off and run down the Klein's driveway (a VERY long stretch). He ran alllll the way down and when he got down to the end, stopped, turned around and began running back. About half way down the driveway coming back I heard him begin screaming "bawk bawk! bawk bawk!" He must have heard the chickens or had a memory re-boot because the bawk bawks were once again his priority as he sprinted toward them! He's a funny guy!
Sunday, July 25, 2010
Marine World!
Looking at the last posted blog, I mentioned that next entry would include pictures of water fun and Marine World. Since then we traveled up to Oregon and Washington and continued gathering pictures and memories! BUT...I promised Marine World and posted those first! Next water fun, and THEN wedding in Oregon and lastly, our trip to Washington where Tyler saw his first ever live "bawk bawks"!
I love this picture because it's so "Tyler" with his burp cloth hanging out of his mouth!
Here is mommy and the Bubbie taking a jeep ride ONCE around the jungle track. After a hot half-hour wait, could they at least compromise with another lap?
Family in the butterfly grotto! The Bubbie LOVED the butterflies - it had to be one of my favorite parts of the trip!
After our first day at Marine World, the Bubbies were exhausted...look at those sleepy heads!
Marine World visit #2 kicked off with Uncle Mikey and Auntie Velear at the Tiger show!
Grrrrr......
Look! Tigers can swim!
Uncle Mikey and John took the Bubbies down for a personal and close up look at the tigers after the show. As Auntie Velear and I clueless chatted outside of the arena, they had an intimate viewing of one of the tigers - doh! Figures - and mommy wasn't there to take pictures! Grrr...
Thursday, July 1, 2010
Becoming 2 Over and Over Again!
The celebration never ends, if you're a Bubbie! The boys have been celebrating their second birthdays non-stop with a visit from Grandpa Schrupp and a visit from their Grandma Thompson, Uncle Bob and Auntie Kristin. Below are some highlights on the continued birthday extravaganzas!
A quick update on Bubbie health: Tyler's stomach x-ray showed blockage in his small intestine so we put him on a two-day regimen of magnesium citrate to clean out his system. After two days of massive diapers, Tyler's daily throw ups improved drastically. He also started a new steroid, Entocort, a couple of weeks ago so we're not sure if it's the resolved blockage, the new drug, or combination of the two. Either way, Tyler is improving (we think). Of course that doesn't mean he'll miraculously begin eating any time soon. Tyler's oral aversion is thickly ingrained into his being - this is a looooong journey folks!
Parker continues to eat on his own but not without bribes, patience and continued use of his appetite stimulant. Right now we are only gavaging water and medications into him during the day and hand gavaging one bolus of formula before he goes to bed at night (if he didn't meet his calorie minimum). We've come so far with him, I really can't complain about our tactics!
Coming soon are pictures of Bubbie water fun and Marine World trip! Until then, enjoy some more 2nd Bubbie birthday snaps!
Wow...look at the HUGE balloon from Grandma Thompson!
A quick update on Bubbie health: Tyler's stomach x-ray showed blockage in his small intestine so we put him on a two-day regimen of magnesium citrate to clean out his system. After two days of massive diapers, Tyler's daily throw ups improved drastically. He also started a new steroid, Entocort, a couple of weeks ago so we're not sure if it's the resolved blockage, the new drug, or combination of the two. Either way, Tyler is improving (we think). Of course that doesn't mean he'll miraculously begin eating any time soon. Tyler's oral aversion is thickly ingrained into his being - this is a looooong journey folks!
Parker continues to eat on his own but not without bribes, patience and continued use of his appetite stimulant. Right now we are only gavaging water and medications into him during the day and hand gavaging one bolus of formula before he goes to bed at night (if he didn't meet his calorie minimum). We've come so far with him, I really can't complain about our tactics!
Coming soon are pictures of Bubbie water fun and Marine World trip! Until then, enjoy some more 2nd Bubbie birthday snaps!
Wow...look at the HUGE balloon from Grandma Thompson!
The boys can't get enough of this balloon - in fact, Parker tried to take it outside yesterday! Thankfully I caught it just before it traveled off to another two-year old in the next county!
Tyler got a ball...one of his all time favorite things!
We know what Parker likes...books!
Here's Auntie Kristin showing the boys their new tiger bubble blower! Quite the Cinderella moment...I should hand her a bucket and dish rag to clean my floors!
Thursday, June 24, 2010
Happy 2nd Birthday and Bubbie Update
Has it really been a month since I’ve updated this blog? Where did the time go? So MUCH happened in May and June but first I must recognize the most important thing about today: HAPPY BIRTHDAY TYLER AND PARKER!
It was two years ago today that my little angels were whisked into this world, earlier than they should have. I remember how scared we were and what “lack of control” really meant. I was grateful for my family and unsure about our future. The physical pain was piercing but temporary, the emotional pain was indescribable. The day will forever be seared into my brain. The following 4 ½ months in the NICU will always be remembered as a foggy journey through machines, wires, tubes, tests, alarms, hand sanitizer, the pumping station, and life and death moments. Some memories are filled with joy, hope, and laughter, while other moments brought shear terror and heart-stopping panic that you want to forget, but just can’t. The saving grace is that these memories are slowly being pushed aside with new, relevant and more important topics like the boy’s obsession - Yo Gabba Gabba, their new manipulation tactics, or their love of bath time.
So where are we NOW, two years later? We’ve come a long way baby!
Our 1lb, 10oz, and 12.75” long first born (by less than one minute mind you) Tyler Johnathon is now 26lbs, 12oz and 33.5” tall. He has been running around like a track star for quit a while now and climbs better than most monkeys. He climbed into his highchair the other day and can climb out of his crib but doesn’t because he’s actually obeying our request, which is odd. Tyler’s speech has improved tremendously in the past couple of months and he is expressing a number of words and sounds. His imitation skills are amazing and when he pays attention (that’s key, he also has the ability to get distracted) he is able to repeat what you say to him. Tyler has been spending more time sitting and reading books lately – in fact at bedtime, Tyler sits on my lap to read books with me. He used to run around and explore during book time, or just didn’t stay still long enough to finish a story. It’s been nice sharing stories with him. For his birthday he received a key board from our So CA family that plays cat music – yes, it’s shaped like a cat, sings cat songs, the keys even sing “meow meow” if you like. It’s enough to drive a mom CRAZY (btw: Thanks Brian, Christine, Lindsey & Alyssa)! Well, Tyler loves this thing and it is able to capture and keep his attention for half an hour at a time! A few months ago I’m not sure he could’ve found an activity to do that – so whether it’s a maturity “thing” or toy “thing”, it’s a great “thing”!
Our 1lb, 6oz, and 13” long Parker Duran is now 27lbs, 2oz and 33” tall. Parker’s physical abilities have grown in leaps and bounds. A few months ago we purchased a play structure for the backyard that includes a couple of small slides. As the boys began climbing all over the furniture this winter, I knew we needed to find something outside that allowed the boys to use their amazing climbing abilities (oh yeah, and keep mommy’s sanity intact). The structure has really enhanced Parker’s strength, fear of heights and lack of control. He is able to climb up and down the structure with ease and slide down without fear. It’s done wonders for him! Speech continues to be a challenge for Parker but his verbal initiative has increased immensely. In fact yesterday John slid Parker down a slide that led into a new water toy the boys got from our Bay Area family (btw: Thanks Mikey and Velear) and Parker was so mad at John that after he got out, he stood outside of the toy, pointed his finger at John at just yelled gibberish at him for a while. He was clearly giving John a piece of his mind. The interesting change in Parker is that he’s become very independent and exploratory. While he continues to read books and “tinker” with the mechanics of objects, he’s currently not engaged in sitting down with mommy and reading stories on her lap like he used to be. Instead he will listen from a distance or pick one book, read a story with me and then continue on his way. Our multiple book marathons are just not happening any more. Change is in the air!
EATING & GI
Eating is such a HUGE topic in our lives that it really needs its own title. And because the boys GI issues are cause for said eating “issues”, it too shares this title!
I will begin with Parker this time!
Parker is officially eating and drinking 65-72% of his daily calories! Wooooo hoooo! AND Parker is no longer on overnight gavages! He is getting all of his calories during the day – no pump at night. We saw the GI yesterday and officially discontinued his last two hours of pumping at night. Our GI was thrilled to see the progress Parker has made in less than two months. She says this is certainly an exception. I’d like to say that Parker is eating with ease, but I can’t. In fact most of time we are using bribes to get the heavy calories into him – I’m sure he’s sick of avocados, but a tablespoon is 42 calories. So we play the “one bite of cracker for a bite of avocado” trick, the “pause Yo Gabba Gabba until you take another bite” trick, the “I’ll turn the page if you drink more” trick. Not ideal but we’d spend ALL of our time feeding Parker if we didn’t do something. The therapists tend to think that when his calorie intake is at 100% and he’s completely on track, we’ll be able to pull back on his manipulation and break the habit without too many consequences. Does it make it better knowing that he’s the one manipulating us? Ha ha!
Now Tyler – just get ready by opening hand, slapping forehead with said hand and yelling “doh”! So last time I blogged about Tyler’s GI issues he was having a reflux test. Well, the test results were inconclusive because it was supposed to be taken after a 72 hour break from the patient’s reflux medication. We weren’t told this and Tyler had had his medication 48 hours prior. So…all of that for not. Doh! The endoscopy results came back showing that the ulcers were gone but swelling had continued in the duodenum area. The GI put Tyler on a 5-day regimen of Prednisone, a steroid. This stuff made Tyler CRAZY, making mommy crazy with him! It clearly worked its magic and Tyler’s throw ups cleared up, but a week or so after discontinuing the drug his symptoms came back. We’ve since put Tyler on another steroid called Entocort which doesn’t seem to make much difference to his throwing up. At yesterday’s appointment the doctor suggested a stomach x-ray and possibly changing Tyler’s reflux medication. The only other option should these things not help, a G-J tube – a stomach tube that sends food directly to the intestine, completely bypassing the stomach altogether. This would allow us to feed Tyler at a higher rate at night so we wouldn’t have to gavage him during the day, when he’s throwing up (mainly a volume issue – he isn’t able to handle volume). Then we would only focus on oral feeds during the day. We’re just not sure if this is what we want to do though, it’s another risky alternative. So, right now we are waiting for the doctor to get back to us with the results of Tyler’s stomach x-rays from yesterday and give us the green light for this new reflux medication. We’ll go from there…that’s all we can do! Until then, Tyler sits in his highchair and takes licks of purees and other liquidy foods. If he gets an unexpected crumb or chunk…look out, here comes a vomit volcano!
Saturday we had an intimate Yo Gabba Gabba birthday party for the boy’s second birthday with my family. I promised John that this celebration wouldn’t include the 70+ guests that came to their first “Celebration of Life”. But come on, that was a special one – they’d only been off oxygen for six months at that time! My challenge was creating a Yo Gabba Gabba good time – har har! I think the boys were totally confused about what was going on but had a blast! Here are some pictures of the day, enjoy!
It was two years ago today that my little angels were whisked into this world, earlier than they should have. I remember how scared we were and what “lack of control” really meant. I was grateful for my family and unsure about our future. The physical pain was piercing but temporary, the emotional pain was indescribable. The day will forever be seared into my brain. The following 4 ½ months in the NICU will always be remembered as a foggy journey through machines, wires, tubes, tests, alarms, hand sanitizer, the pumping station, and life and death moments. Some memories are filled with joy, hope, and laughter, while other moments brought shear terror and heart-stopping panic that you want to forget, but just can’t. The saving grace is that these memories are slowly being pushed aside with new, relevant and more important topics like the boy’s obsession - Yo Gabba Gabba, their new manipulation tactics, or their love of bath time.
So where are we NOW, two years later? We’ve come a long way baby!
Our 1lb, 10oz, and 12.75” long first born (by less than one minute mind you) Tyler Johnathon is now 26lbs, 12oz and 33.5” tall. He has been running around like a track star for quit a while now and climbs better than most monkeys. He climbed into his highchair the other day and can climb out of his crib but doesn’t because he’s actually obeying our request, which is odd. Tyler’s speech has improved tremendously in the past couple of months and he is expressing a number of words and sounds. His imitation skills are amazing and when he pays attention (that’s key, he also has the ability to get distracted) he is able to repeat what you say to him. Tyler has been spending more time sitting and reading books lately – in fact at bedtime, Tyler sits on my lap to read books with me. He used to run around and explore during book time, or just didn’t stay still long enough to finish a story. It’s been nice sharing stories with him. For his birthday he received a key board from our So CA family that plays cat music – yes, it’s shaped like a cat, sings cat songs, the keys even sing “meow meow” if you like. It’s enough to drive a mom CRAZY (btw: Thanks Brian, Christine, Lindsey & Alyssa)! Well, Tyler loves this thing and it is able to capture and keep his attention for half an hour at a time! A few months ago I’m not sure he could’ve found an activity to do that – so whether it’s a maturity “thing” or toy “thing”, it’s a great “thing”!
Our 1lb, 6oz, and 13” long Parker Duran is now 27lbs, 2oz and 33” tall. Parker’s physical abilities have grown in leaps and bounds. A few months ago we purchased a play structure for the backyard that includes a couple of small slides. As the boys began climbing all over the furniture this winter, I knew we needed to find something outside that allowed the boys to use their amazing climbing abilities (oh yeah, and keep mommy’s sanity intact). The structure has really enhanced Parker’s strength, fear of heights and lack of control. He is able to climb up and down the structure with ease and slide down without fear. It’s done wonders for him! Speech continues to be a challenge for Parker but his verbal initiative has increased immensely. In fact yesterday John slid Parker down a slide that led into a new water toy the boys got from our Bay Area family (btw: Thanks Mikey and Velear) and Parker was so mad at John that after he got out, he stood outside of the toy, pointed his finger at John at just yelled gibberish at him for a while. He was clearly giving John a piece of his mind. The interesting change in Parker is that he’s become very independent and exploratory. While he continues to read books and “tinker” with the mechanics of objects, he’s currently not engaged in sitting down with mommy and reading stories on her lap like he used to be. Instead he will listen from a distance or pick one book, read a story with me and then continue on his way. Our multiple book marathons are just not happening any more. Change is in the air!
EATING & GI
Eating is such a HUGE topic in our lives that it really needs its own title. And because the boys GI issues are cause for said eating “issues”, it too shares this title!
I will begin with Parker this time!
Parker is officially eating and drinking 65-72% of his daily calories! Wooooo hoooo! AND Parker is no longer on overnight gavages! He is getting all of his calories during the day – no pump at night. We saw the GI yesterday and officially discontinued his last two hours of pumping at night. Our GI was thrilled to see the progress Parker has made in less than two months. She says this is certainly an exception. I’d like to say that Parker is eating with ease, but I can’t. In fact most of time we are using bribes to get the heavy calories into him – I’m sure he’s sick of avocados, but a tablespoon is 42 calories. So we play the “one bite of cracker for a bite of avocado” trick, the “pause Yo Gabba Gabba until you take another bite” trick, the “I’ll turn the page if you drink more” trick. Not ideal but we’d spend ALL of our time feeding Parker if we didn’t do something. The therapists tend to think that when his calorie intake is at 100% and he’s completely on track, we’ll be able to pull back on his manipulation and break the habit without too many consequences. Does it make it better knowing that he’s the one manipulating us? Ha ha!
Now Tyler – just get ready by opening hand, slapping forehead with said hand and yelling “doh”! So last time I blogged about Tyler’s GI issues he was having a reflux test. Well, the test results were inconclusive because it was supposed to be taken after a 72 hour break from the patient’s reflux medication. We weren’t told this and Tyler had had his medication 48 hours prior. So…all of that for not. Doh! The endoscopy results came back showing that the ulcers were gone but swelling had continued in the duodenum area. The GI put Tyler on a 5-day regimen of Prednisone, a steroid. This stuff made Tyler CRAZY, making mommy crazy with him! It clearly worked its magic and Tyler’s throw ups cleared up, but a week or so after discontinuing the drug his symptoms came back. We’ve since put Tyler on another steroid called Entocort which doesn’t seem to make much difference to his throwing up. At yesterday’s appointment the doctor suggested a stomach x-ray and possibly changing Tyler’s reflux medication. The only other option should these things not help, a G-J tube – a stomach tube that sends food directly to the intestine, completely bypassing the stomach altogether. This would allow us to feed Tyler at a higher rate at night so we wouldn’t have to gavage him during the day, when he’s throwing up (mainly a volume issue – he isn’t able to handle volume). Then we would only focus on oral feeds during the day. We’re just not sure if this is what we want to do though, it’s another risky alternative. So, right now we are waiting for the doctor to get back to us with the results of Tyler’s stomach x-rays from yesterday and give us the green light for this new reflux medication. We’ll go from there…that’s all we can do! Until then, Tyler sits in his highchair and takes licks of purees and other liquidy foods. If he gets an unexpected crumb or chunk…look out, here comes a vomit volcano!
Saturday we had an intimate Yo Gabba Gabba birthday party for the boy’s second birthday with my family. I promised John that this celebration wouldn’t include the 70+ guests that came to their first “Celebration of Life”. But come on, that was a special one – they’d only been off oxygen for six months at that time! My challenge was creating a Yo Gabba Gabba good time – har har! I think the boys were totally confused about what was going on but had a blast! Here are some pictures of the day, enjoy!
Wednesday, June 23, 2010
Happy 2nd Birthday Tyler and Parker!
On the door as people entered.
I made this for the refreshments and for our party favors - sugary cookies with cookie cutters attached.
John and I made the bold decision to go to Marine World the day before the party rather than prepare. So these Muno cakes were made at midnight! I decided to go with a variety of desserts rather than one big cake.
Are these the funniest cakes you've ever seen? You should have seen me trying to figure out where to stick bumps. My only reference was the cover of the Yo Gabba Gabba video - pretty funny! I'm not sure what the boys made of them!
Because you can't buy Yo Gabba Gabba stuff in the store I pretty much created most of it. These are picks I made to stick in the cupcakes - and ended up sticking everything I could get my hands on. If the toilet paper wasn't so "sturdy", it would've been "picked"!
Here's our food table complete with corn dogs and mac & cheese to compliment the roasted chicken and salad. Funny thing, the corn dogs and mac & cheese were wiped out, chicken and salad...not so much! What happened to everyone's diets?
Tyler was having sooo much fun!
I don't think any of the pictures show the boys shirts very well - rats! I created the design and John screened them - they have a faux Yo Gabba Gabba logo on top with Muno in the middle and their names on the bottom. We saved them for the party and the boys just love them!
Here's Parker giving the camera his usual "look"!
Look at that cute Parky face - couldn't you just squeeze it tight?
The excitement is brewing...
Yes, we had pinata fun! Actually I did not make this - it was actually given to us by someone who ordered one for her 2 year-old's birthday but received two instead - so she gave us her extra. Okay, we'll take it! And boy was it a blast! The boys didn't quite know what to do, but had a great time any way. I think the adults had a little more fun as they ended up taking turns! I think there is secret footage somewhere - uuuu hum!
It's cake time and the Bubbies are just not sure about this cake stuff! For some reason I didn't get shots of the boys all cakey - but I know I got video!
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