Thursday, December 31, 2009
Monday, December 28, 2009
I posted three videos: the first is of the Bubbies looking at everything for the first time; second is of Parker riding his new horsey; and third is of Tyler NOT riding his new horsey - it's too funny! I have more video snipetts, but I'll post them later. I hope everyone had a happy holiday so far - I know the Thompsons did. Enjoy!
Wakey wakey - what's that in our living room? Santa came!
Hum...I wonder if Tyler is ready to ride yet? Obviously not!
Monday, December 21, 2009
Here are a few pictures of a fabulous holiday evening. Enjoy!
Tyler is getting used to Santa...
Wednesday, December 16, 2009
Yesterday was an early morning GI appointment. We were VERY much looking forward to it because we hadn't seen the doctor since Tyler's endoscopy. Since then, Tyler completed his 2-week regimen on antibiotics, then we were told to DC the Carafate (coats the stomach and upper intestine) and see "what happens". Sure enough, after only a few days, Tyler started having symptoms again: crying out at night, throwing up at every feed, tugging at his Mic-key button. We called the GI and told the friendly nurse that his symptoms returned. They started the Carafate back up, but not the antibiotics.
The GI visit was actually one of the better appointments - we actually SAW the doctor, big plus, and got immediate relief for Tyler. When she gave Tyler his check up, she noticed that his button site was pink and irritated. We mentioned how much it'd been hurting him, but we attributed it to the ulcers. She said that it could be the Mic-key and recommended that we switch him to a Mini One, a silicone based product that is bendable and she thinks, more comfortable. So we tried it - the doctor switched out his Mic-key for a Mini One and "wah lahhhh" - he's healed! No more tugging, crying, complaining when we hook him up...nothing. We couldn't believe it!
Both boys were gaining adequate weight and the doctor seemed very pleased with their growth. Tyler now weighs 24lbs and Parker weighs 23lbs, 10oz. We talked about the new feeding specialist and our plan to get the boys eating, but no changes were made to their gavage totals. Hopefully our feeding specialist will get ahold of their nutritionist so they can collaborate on the feeding plan for both boys. The GI told us that she'd like us to push the boys on eating - she's fully supportive of challenging them because she thinks we're still in a good "window" for their eating.
So for now we are holding strong with Tyler's meds and their formula intake. We did take home some of the next level formula, Neocate Jr. We will probably make a switch next week after the Bubbies terrible colds are better. Not all babies adjust to the Neocate Jr. well, so we need to make the change when the boys are "clean" and healthy! And to boot, BOTH boys are cutting teeth like no one's business! Parker is grinding out his molars - he almost has ALL of his teeth through, amazing. Tyler is working on some teeth as well, so besides daily throw ups, we get the major drool factor again! Fun times guys...thanks!
Video Below: Every week our favorite Developmental Therapist, Danielle comes over to "play". The boys LOVE their time with Danielle and fight over who gets "play" with her first. Last week she brought a climbing mat - we are working on Parker's upper body strength and Tyler's...hum...looking at the video below, maybe patience? Ha ha!
Danielle and I thought Tyler would be ALL over the climbing mat - he loves to climb, run, yell...wouldn't you think he'd love being on the mat? Well, Parker ended up LOVING it! He went up and down, up the stairs, down the slide, down the stairs, up the slide...he was in heaven. It was just so cute seeing how much fun Parker was having. I caught a little video of the action - I would've caught more of Tyler but he didn't spend too much time on the mat. Interesting...
Okay lazy Tyler, can you actually go ALL the way up and ALL the way down next time? No short cuts mister!
Could Parker have more fun? I just love these moments!
Wednesday, December 9, 2009
This scene below shows well rested, non-clothed, happy happy boys! I think I'm eating my morning oatmeal while taping so periodically you can hear my bowl and spoon "clank". Gotta multi-task! I'm sure shortly after eating my oatmeal, I folded laundry and picked ALL of the toys up from the floor - cough cough! ;o)
Tyler's laughter is contagious, isn't it?
Sunday, November 29, 2009
Tuesday, November 24, 2009
Tyler is very serious about his koosh!
Monday, November 16, 2009
Before you view the fun pictures of Tyler's homecoming, I have to share other great news from Friday. Our case worker from our insurance company called Friday afternoon to tell me that our feeding specialist was approved! I have been working on this for over 3 months and it's finally happening! This feeding therapist can make or break a child's ability to eat. Her techniques will not only assist in battling Tyler's gag reflex and throw up spells caused by food in his mouth, but reduce our timetable for getting both boys 100% oral. It sounds like I'm putting a lot of eggs in this basket, but I have faith in her and her approach. I know this makes more work for me, but I also know the challenge will be worth it in the long run!
Lastly, the boys had an assessment by CA Alta Regional Center on Friday. The good news is that the boys will continue to receive developmental and occupational therapies for at least 6 more months until their next assessment. Both therapies have been great not only for the boys, but me as well. Their approach to teaching the boys has been useful in my daily interaction with the boys as well. And they really enjoy the developmental therapist, Danielle, who's been with the boys for almost a year now.
So as you could imagine, November 13th was quite a day for progress in Thompson house! The only hitch in the excitement was Tyler's poor raw rear caused by his antibiotics. Poor Ty is pooping out a runny, orangey colored stool that obviously holds acidic qualities because his rump is just red and he cries and cries as we're cleaning him and applying gobs of Aquaphor. We heard that Aquaphor and Gold Bond baby powder work wonders in combination. We're going to try that tonight and see how it all looks tomorrow. We're not sure if the medications are helping with his ulcers and probably won't notice anything for a while. We look forward to seeing improvement and an ulcer-free endoscopy in 3 months.
Below are pictures of little Tyler on November 13, 2008, his day of discharge. Enjoy!
I think the doctors projected that we'd have difficulty with Tyler's eating so they plumped him up before discharge. Before he left that day he had a hearing test - looks like he's sleeping through it!
Thursday, November 12, 2009
A duodenal ulcer is a raw area in the lining in the upper part of the small intestine (duodenum), where it connects to the stomach. Tyler has multiple ulcers, so the spots were actually lesions, or erosion of the area.
Normally duodenal ulcers are caused by family history, having a Helicobacter pylori infection, using nonsteroidal anti-inflammatory drugs such as aspirin and ibuprofen, and the use of cigarettes and alcohol. We’ve been trying to get Tyler to kick his addiction to cigarettes, but it’s been tough. And now he’ll have to lay off the alcohol as well. No, actually Tyler has the pylori infection. The doctor said he could’ve picked up these bacteria a long time ago, but it just didn’t “present” until he finally started having terrible ulcer pains.
Treatment will consist of a new medicine regimen that I’ll incorporate into their already scheduled out day. Tyler will also go back on his Nexium as well. He’ll be taking a medicine that forms a protective barrier over the site of the ulcers, Nexium to reduce the amount of acid the stomach makes, and two antibiotics to treat H. pylori.
The online medical sites stress that to prevent the duodenal ulcers from reoccurring, lifestyle changes are recommended so I’ll be switching out Tyler’s morning coffee gavage to decaf!
We hope to see improvement in a couple of weeks. He’ll have a follow up endoscopy in about 3 months to see if the ulcers have been eradicated! I am glad that his problem isn’t allergy related – I feel good about being able to continue with his feeding therapy and knowing that I don’t have to be concerned about food types.
Whew…one more hurdle to tackle! We can do this…I know we can!
Tuesday, November 10, 2009
Hmmmm...I see Tyler in front, Parker behind him, the play farm on the right -but what's that ON the farm? Could that be Parker's diaper? Then what's covering Parker's parts...oh, his hand! Well, that'll absorb just fine, won't it? NOT!
Thursday, November 5, 2009
So the big question is: what are the white spots up and down his esophagus that she thought could be allergy related?
Our heads are spinning right now and I'm trying not to go to a dark place. Argh!
So now we get to take the boys to the Pediatrician in a few minutes so they can get their first of five RSV shots and hopefully 2nd round flu shot. I'm not sure if they'll be able to have the flu shot because they just had the H1N1 shot on Monday, we'll see!
I hope we get some useful information on Monday or Tuesday. I'll let everyone know!
Gut wrenching feeling...
Sunday, November 1, 2009
But Halloween 2009 will be forever ingrained in my mind. Our little Pooh and Tigger experienced their first Halloween celebration! John and I drove the Bubbies around to family and friends and then found ourselves at home handing out candy and trying the keep the Bubbies from escaping out the front door. Finally John took Tyler outside to see the various costumes and people running around the neighborhood and we realized that he was in his element. Tyler ran around with wild curiosity, acting as though he'd eaten a bag full of candy. No sugar high needed for Tyler Thompson - his excitement is al natural. Next year is going to be even more wild and fun with these two.
You know, these are the moments I dreamed of and it makes me teary just thinking about how dreams can come true!
Parker Pooh and Tigger Ty say "Happy Halloween!"
Tyler displaying his "Happy Birthday Aunt Teresa" hat.
This is the funniest video! OBVIOUSLY Parker was thrilled with his costume, not! It was just the belly actually - he couldn't walk with that HUGE Pooh belly! I think he was mad at me because he wouldn't look at me for a while - torturing mommy for his brown nose and Pooh belly! Isn't that what kids are for...to dress up in funny costumes and be amused?
Here's just random footage of Park and Ty in costumes. I didn't get much footage of them - just too much excitement!
Friday, October 30, 2009
First Tyler’s endoscopy: This morning Tyler and John checked into the hospital at 6am (fun 4am wake up call) for an 8am procedure schedule. Unfortunately the doctor was running late so John and Tyler got to hang out and play for 3 hours! It’s a good thing I dressed Tyler in his Tigger outfit this morning – I thought, “Maybe they’ll take it easy on him if he looks REAL cute!” Well, Tigger outfit and all, they STILL had a hard time catching his veins and ended up sticking him 3 times before the nurse “team” decided to go for the foot – success, finally. Poor little guy had such a hard time the “toy lady” came over and gave him 3 toys for each attempt. Looks like we inherited more bath friends. So right around 9am the doctor arrived and took Tyler right in – well, John and Tyler. They let John hold our little Tigger until he fell asleep and then they pushed them both in the procedure room and then let John hand him off. John waited in his recovery room for about 10 minutes and the next thing he knew, here was Tyler! It was that quick! He finally woke up and John was driving out of the hospital parking lot by 10am. The longest part was waiting – isn’t that always the way it is?
Bottom line: Tyler’s GI track looked good, not obstructed. The GI doc did see little white dots along the track though – she thinks they may be allergy related. She took a biopsy and they drew blood to test for ALL allergies. We can’t wait to find out what he’s allergic to because we’ve suspected allergies for a while now but couldn’t put our finger on what he could be allergic to – he only takes a few drugs and the most elemental, hypoallergenic formula. We looked all over the internet to see if anyone has had issue with our formula, Neocate, and low and behold I finally found information. I found a conversation between mothers talking about their baby’s intolerances to corn-based formulas, which are ALL powdered formulas, including Neocate. DING DING DING! John and I immediately thought, “He must have this allergy, that’s all it could be!” So…we are crossing our fingers that this mystery will be solved and that PART of his problem will be resolved! After all, he still needs to eat! ;o)
Parker’s Anniversary: Happy Anniversary our darling boy! One year ago today Parker came home from the NICU! After his 129 day hospital stay, Parker was finally able to come home with his mommy and daddy! I remember how excited we were to FINALLY get to take him with us – we’d waited sooo long! We knew it’d be a challenge with his oxygen and multitude of drugs, but we also knew that he’d be better off at home with us. The only bitter sweet part of his homecoming was the fact that his brother was not being discharged. Tyler’s eating wasn’t on track (just the beginning) and his oxygen dependency was a little too high for release. So Parker came home alone and would be there as the ‘only child’ for 2 more weeks. Looking back at the video and pictures, I am amazed at how tiny he was – where the time go? He was such a little sweet guy who rarely cried and when he did, you could barely make it out because of his rough, intubation-damaged throat. In fact Parker still talks with a “husky” voice - very cute for such a sensitive guy.
Wow, I can’t believe it’s been a year! It seems like so long ago, but at the same time seems as though they just came home. I do know that I was in a “fog” for months after they came home – trying to keep up with pumping, their meds, feedings, oxygen maintenance. I think I’ve just recently found my brain again, but not my memory. I think that’s gone forever! What’d I just say? ;o)
So...BIG day at the Thompson’s today! And tomorrow will be another BIG day when the boys enjoy their first Halloween! Last year’s wasn’t so exciting with Tyler still in the NICU and Parker being one day at home. Tomorrow will be a fun time for my camera, that’s for sure! ;o)
Below are some pictures of Parker the day we brought him home. My video didn’t upload well because it was filmed in HD. As soon as I can figure out how to convert it, I’ll post the homecoming video. And immediately below are a couple of endoscopy pics - ewww! Enjoy!
Nothing like a little Tigger at the hospital to make people feel better. John said the nurses LOVED our Tigger Ty - they were gushing all over him! I just hoped they washed their hands before touching! Oink oink - no swine flu allowed!