Welcome to Tyler and Parker Thompson's Blog

Tyler and Parker Thompson arrived on June 23, 2008 at only 26 weeks and 4 days old, weighing 1 pound 6 ounces (Parker) and 1 pound 10 ounces (Tyler). Parker spent 129 days (home 10/30/08) in the NICU, while brother Tyler spent 143 (home 11/13/08). We are thrilled to have our family complete with both boys home!

This blog was created by John (the daddy) to inform family and friends (and now new acquaintances) of the twins progression. Below is the blog archive dating back to the week Heather (the mommy) was admitted to the hospital. We try to post weekly updates, but on occasion the week gets the best of us.

Saturday, October 16, 2010

Hey, Where You Been?

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 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!

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!

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!

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!

Parker is again discussing plans to reattach original nozzle to hose while daddy divides his attention between to clearly different bubbie activities.

One month later...Parker decides that water feature is not man's enemy and huge risk factor! But refuses to let go of his nozzle "issues".

Look - Parker is even sitting down! He's come so far...sniff sniff! Make a mommy proud little one!

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!

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!

The things you just don't realize about your children.

These are the moments you don't "get" until you have kids.

Auntie Karla: "We've got the boys, you two go ahead and eat!"
John and I will never forget how nice this was.

Our perspective is forever changed.

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...

...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!

My favorite picture from our trip - Tyler giving mommy a flower!