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!
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.
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!