Today was a big day for Robbie.
He had a follow up appointment with his GI doctor today and it went quite well. She was happy with his weight (it was up, then down, now recovering after having been sick) which is at 21 lb 15oz. He's right at 25%tile on the adjusted growth chart and she'd like to see him stay there.
We discussed his eating, nutrition etc and she was pretty happy with the way things are going for now. They cooed over him as usual, which is always fun.
But the real fun came in the afternoon. Now, I can't even believe I'm typing those words because usually the meeting we had today was one I dread.
It was an IFSP meeting (individualized family services plan) for Robbie's state run therapy program. Basically we meet every 6 months to go over his progress and needs and set new goals. I usually dread these because honestly, having experts in to pick your child over just isn't fun. No one likes to see a list of what they CAN'T do. It's obviously important and done for good reason, so we suffer through, but I certainly don't enjoy the process.....usually.
For reference, Robbie's biggest area of weakness (both literally and figuratively) has been gross motor. When he started physical therapy 6 months ago, he was 39% delayed overall- as much as 70% in some areas.
Today at the meeting, all of his therapists had the chance to speak. They go over their new evaluations and their goals. Physical therapy started. She'd phoned in because she couldn't be present. She was exceedingly positive. She started talking about the new things she got to see when she evaluated him yesterday (pivoting while sitting, while on his tummy, she was even able to get him to stand unassisted for 1-2 seconds)and it was great to hear. Then she said that he was testing at 17% delayed. I was stunned. He's come so far!
By the time she finished and asked if I had any questions, I couldn't speak because I was fighting back tears. Our little fighter is catching up!
The rest of the meeting went pretty similarly. He also tested at 17% delayed in fine motor (and she attributed much of that to his eating issues and his small hands) and in adaptive skills (mostly related to lack of motion- he can't go get things he needs- like his mom and dad!)
His biggest delay was social/emotional. That was mainly because he doesn't mimic or play games yet. (No patty cake, for example.) That was at 29%. That's going to win him developmental therapy twice a month, but she wasn't even adamant that needs to happen. She feels like much of this comes down to his lack of communication (both receptive and expressive) and as that emerges, she believes he'll make progress. I am opting to go forward with it because I want to give him every advantage possible and frankly, he LOVES that therapist more than I've ever seen him love someone and I think the interaction would be good for him.
We all discussed his lack of eating a lot. That's not something the state evaluates for, so there's no real "score" to be had, but if it were, we all know it would be quite low. He is taking several bites of food pretty much every day these days. And we've had some stellar days here in there (stellar being about 2oz at one sitting) so we've seen some progress. There is still a long road ahead of us and we know that. Those goals were interspersed into his others as they related (social interactions, sensory and oral stimulation etc.) and we have a plan, at least.
Usually at the end of these meetings, I feel defeated and overwhelmed. Today, I felt uplifted and hopeful. Everyone agreed that he's incredibly good-natured, bright, charming and playful. Those are qualities that can't be taught or therapied. We're just incredibly blessed to have a son with such a great personality. We believe those qualities will take him far. The rest of it will come in time.
--Trish
Well, Robbie's ears are *finally* no longer infected.
We saw the ENT on Friday and he said they were no longer actively infected, but are still full of fluid.
He also said he already had some ear drum thickening from the ear infections.
Robbie was sort of a borderline case for tubes, so he left it up to me. His general feeling was that if he's had this much trouble with his ears during the summer "safe" months, the winter was probably going to bring us a lot more trouble.
Our pediatrician said the same thing last week, and I tended to agree, so I said we'd go ahead and do them.
An added benefit is that if he does get in infection with the tubes in, it can be treated with ear drops instead of oral antibiotics. As we've been through tummy hell the last few weeks with the oral stuff, that was music to my ears. (Pardon the pun.)
They go in on October 14th. We scheduled it for several weeks out because Robbie's still quite sick right now and needs to be completely well for surgery.
I'm a little nervous, mainly because of his history with anesthesia. Since his last surgery was supposed to be outpatient and turned into a day in the PICU and 2 days in the peds unit, I tend to get anxious when the subject of being knocked out comes up. The good news is that this is a very, very short surgery. So short, in fact, they don't even give him an IV (thank goodness- he's got plenty of scars already) or intubate him. They just gas him for the 5-10 minutes that the surgery takes. Theoretically he'd be ready to go home just a couple of hours after the surgery is over. I'll be packing an overnight bag anyway, but hoping to not need to use it.
He's still wheezing a number of times during the day and just generally has a yucky cough and a snot-filled head. Fortunately, he's still in good spirits and is sleeping well most nights. Napping has been less then successful and the coughing and drainage has definitely lead to an increase in his puking. It's amazing he's so happy and playful when he clearly doesn't feel good, but he is. I can't express enough how blessed we are to have such a wonderfully good-natured son.
Please continue to keep Robbie in your prayers. His lungs really could use a boost.
--Trish
I really do have a lot to catch up on, but it's just been kinda crazy around here.
I wanted to sit down and catch up the last few nights, but Robbie's been sick and there just hasn't been time.
He was supposed to have a follow up for his ears today so we were headed to the doctor anyway. When we got there and I was getting him out of the car, he was wheezing, so I was glad we were there already.
He's okay. His oxygen saturation was 95% (the minimum it needs to be) both before and after a breathing treatment in the office. He tested negative for RSV (*phew*) but he STILL has a double ear infection.
The last round of antibiotics just tore his stomach up, so I really, really, really didn't want to hear that. She doesn't know if the infection was cleared up and is back because he has a cold, or if they never got better at all.
In an case, we now have a 3rd round of antibiotics, a round of breathing treatments for home and a referral to an ENT. She'd like to see about him getting tubes. Even though he hasn't had chronic ear infections, this one has proven to be incredibly stubborn, and he doesn't tolerate antibiotics well. She also thinks that his ears may be draining down into lungs and doesn't want to go all winter fighting this same thing over and over.
On the upside- she did submit him for Synagis shots and said she was going to "work really hard" to get them approved because he's "proven himself to be a wheezer." They're very difficult to get approved for a second year, but hopefully the fact that he's in daycare and has gotten quite sick twice during the "safe" months will help things along.
Here's a quick photo I snapped with my cell phone today. Robbie's really in pretty good spirits, all things considered. But he *HATES* the doctor's office and was very, very sad that people kept touching him and wanting to put a sensor on his toe and you know.. LOOKING at him. Then when they had to swab his nose for RSV, well, he was quite beside himself. 
And since I don't want to leave you thinking of a sad Robbie, we'll include a recent smiling picture, too. 
It's been a crazy week. When we went to the pediatrician on Wednesday to make sure Robbie's ear was clear, not only WASN'T it, but the other ear had joined the party.
That won him another 10 day round of a new antibiotic. Well, that antibiotic has been nothing short of hell on his system. If he didn't have his G-tube to help keep him hydrated, we'd have been at the E.R. and I have no doubt he'd have gotten himself an IV for fluids.
After a few days of a lot of pedialyte, probiotics, BRAT diet, lots of crying in gastric distress and then lots of crying from diaper rash distress, we finally seem to be on the mend.
His poor little bum still looks like hamburger, but the crying in pain is now restricted to diaper changing time. Unfortunately that's about every 90 minutes - 2 hours most of the day, but it's way better than it was.
Tomorrow I'll start upping his intake of something besides pedialyte and hope for the best.
In much brighter news, we had a banner solid food eating day yesterday. I found some jarred baby food that was mixed cereal with bananas and applesauce and thought I'd give it a try. If he hadn't been willing to eat it, I was going to put it in his G-Tube, trying to settle his stomach.
Robbie's grandma is here visiting for the weekend and I asked if she'd like to try to feed him. Sometimes a new person feeding him will get him to try something new. Well, it worked! He was going CRAZY for it. Opening his mouth, pulling the spoon to his mouth, wanting more, more, more. I actually had to stop her from continuing because I was afraid he'd throw it up if he ate too much.
Then later in the evening, I gave it a try and he did the same thing for me. I was so excited I had butterflies in my stomach. It was so amazing to see him enjoying eating.
Of course, the streak ended today, but for a day, he was eating like a normal little boy. We'll celebrate the victories as they come.
Another exciting event- we have a 4th tooth! He's been gnawing his pacifier like it's the source of all life and I've been able to feel it under the gum for several days. Today it officially made its appearance. He's getting to be such a big boy!
In semi-related news, Friday was September 4th. That was Robbie's due date, which means he is now officially 1 year old adjusted. Happy second first birthday, Robbie!
--Trish
Our dog passed today.
Our hearts are broken.
Kenzie was quite old, particularly being a large-for-breed Boxer. He was a tall, slim 85 pounds- a gentle, crazy giant. He was 11 1/2 and I hoped he'd be one of those dogs that defied the odds for life expectancy.
Boxers are quite prone to cancer and we'd had two scares in the last year. He had two tumors removed from his mouth last year and had a large growth on his paw for the last several months. All were benign.
I really thought that's what would get him in the end; the time would come and we would make the decision to ease his suffering. I honestly don't know what happened, which is the hardest part. I didn't get to say goodbye.
He ate well yesterday. His food bowl was empty when I filled it around midnight.
This morning I was rushing around trying to run an errand for Robbie before work and didn't pay much attention to him. He was really a great dog and had let himself out into the sunroom preparing for me to leave for work. He was a housedog, but during the day, he had the run of the sunroom, garage and a doggy door to the fenced backyard. I told him "you're a good boy" when I saw he hadn't made me call him. Then I left. They would be my last words to him.
When I got home, he didn't meet me at the door. In fact, no one did. I wondered aloud where everyone was. Robbie was napping, David was in his office. I went to look for my dog, thinking he hadn't heard my car come in.
I opened the backdoor and saw him laying by the fence. I thought he'd jump up like he normally did when I surprised him. "Oh mom! You're home!" but he didn't move. My heart sunk. "Kenz? Kenz?"
Before I got to him, I knew. "Oh buddy. Please don't be.. Oh God."
I came running back inside and told David. That's when I started crying. I really haven't stopped since.
I called the vet to have him cremated. Fortunately my favorite vet employee answered the phone. She has a boxer, too and we always talked about getting the dogs together for a play date. She met me in the parking lot and cried with me for a while.
Everyone speculates that he went quickly. He wasn't curled up as though he knew something was wrong. He honestly looked liked he'd gone to lay in the shade of the fence and just enjoy the day. His eyes were still open. I pray it was a stroke and it took him quickly and painlessly. Most of all I hope he knew how much he was loved.
Even David, admittedly not a dog person, shed some tears and proclaimed "He was a good dog."
There is already an emptiness in the house. Tonight when Robbie threw all of his Puffs in the floor, I had to sweep them up. When Robbie splashed water from the tub into the floor, no slobby dog bound in to lap it up, or to lick the water from our arms or to give Robbie kisses so gentle you couldn't believe a dog as sloppy as Kenz was could give them.
I often wondered if Robbie's first real word would be "dog." Now, he won't remember Kenz when he gets older. But we'll tell him about his first dog. I'm thankful we have pictures of some of their interactions. Kenzie taught Robbie that just because things are bigger than you doesn't mean they are scary. And Robbie taught Kenzie that patience is always rewarded- whether it be with an animated pat on the head or scraps under a high chair.
But he's gone. Thus is the bittersweet symphony of pet ownership. So much joy they bring, that when they're gone, the sorrow is even more profound.
If there are no dogs in Heaven, then when I die I want to go where they went. -Will Rogers
Friday night, Robbie spent 2 hours in misery. I didn't really know what was going on. He was spitting up a bit, and generally acting miserable, but nothing was obvious. We were up from 2-4am. He then slept in until 9:30.
Unfortunately, when I got him up, he was burning up. 100.6 under the arm. Uh-oh. He was also super whiney and would not be put down at all. Definitely out of character.
I called the doctor. Fortunately our pediatrician has Saturday hours (the doctors take a rotation) so we headed in.
I really liked the covering doctor, which was a surprise. Not that I've ever actively disliked any of them, but I do feel like sometimes they dismiss the seriousness of his prematurity, and tend to rush. Not so on Saturday. She asked good questions and seemed to actually listen to the answers. She was great with Robbie (who cried the entire time. His doctor phobia is fully enacted.) His lungs were clear, which was a relief. His right ear, however, wasn't as lucky. She said "well, it's full of pus." Yum. Leftie was full of fluid, though not actively infected yet.
We left with a prescription for an antibiotic.
Once we filled the prescription and headed home, Robbie was ready for a nap. He whined all the way through Target because I couldn't hold him every. single. second. so I was ready for his nap, too.
We've kept him dosed with Tylenol and Motrin every 4 & 6 hours, respectively, but until this afternoon, couldn't get his temp below about 100 degrees under the arm.
He's been fairly pukey and had a bit of a clear runny nose as well. I suspect the drainage from his ear is creating havoc in his whole system.
Fortunately tonight, his fever seems to have broken. He was 98.7 earlier and he no longer feels like a hot coal. Gross rocks of what I assume is dried up pus are coming out of his ear, but he doesn't seem to be in any pain. His mood was better tonight and so far, he's sleeping well.
Funny, I was worried about germs at daycare, and he gets something that isn't contagious.
Of course, this means that he can't go to daycare tomorrow. (Have to be free of fever for 24 hours first) so I'll be using a vacation day to stay home with him.
Maybe it's all just a ploy to get me to stay home, huh? I bet the doctor's in on it.
--Trish
It's been a very big few days for Robbie.
I am now back to work after a year off, so that means Robbie has to go to daycare.
We have been very fortunate in finding a GREAT place for him in a daycare owned by my dad's longtime girlfriend's sister. It's just the owner, Julie and one of her daughters, Katie and the kids.
I can't say enough good things about them. They both have great energy and spirits. You can tell they truly love kids.
The night before I was a bit nervous, but got everything as ready as I could, so that in the morning, we just needed to grab his feeding pump and food and my lunch and could be on our way.
Morning went pretty well. I had to wake Robbie up, but he was in a good mood. Got him dressed (small problem- he is already too big for the first day outfit I'd planned! But we went with a cotton jumper, no big deal.) and we were on our way.
Of course, as soon as I pulled up to the daycare, I realized I'd neglected to bring his bottle for the day. Oops! So I took Robbie inside and sat him down. He went straight to playing. I ran back across town to grab his bottle and then back again. When I got back, he hadn't even noticed I was gone. Turned out to be a nice dry run.
Of course, that also ate into all the time I'd budgeted for having my weepy good-bye, but that might have been for the best. I was able to spend 10 minutes just watching him play. When it was time to go, I hugged him, and you could tell he just wanted back down to continue playing.
I got a little choked up and went to my car. I cried a little on the way to work, but honestly, it went better than I'd expected.
Katie texted me a picture pretty early in the day. He was happy. No tears.
I called to check on him around noon and Julie was giddy with excitement. Robbie had eaten HALF A JAR of baby food! That's a HUGE feat for him. She said she counted 30 spoonfuls. Plus 5 puffs! It was so great to hear. And to know that Julie was as excited as I was meant a lot. It's nice to know he's in caring arms.
Later in the afternoon, Katie texted another picture. This time he had yogurt on his face. He'd only had about 3 spoonfuls, but still. An afternoon snack just like a regular boy.
I was able to get off of work an hour early (things are slow) which meant I could pick him up from daycare instead of David.
When I arrived, he barely glanced up at me. When I sat down next to him, he gave me a half smile as if to say "it's about time, mom" but went right back to playing with a balloon. Finally a minute or two later, he reached for me and wanted to be held. I tried to set him down again and he didn't want that. He still wanted to play, but from the confines of my lap. Maybe he had missed me a little after all.
Today was his second day there and I wish it had gone as well. It didn't go badly, but he definitely knew what was going on this morning. As soon as I got him in the door and sat him down, he started to whine. Katie was great about distracting him, which worked. But when he'd see me, he'd whine again. I think he knew I was leaving him. It broke my heart.
When it was time to go, Katie took him and distracted him so it wasn't too traumatic. They told me later that he never did work up to a full cry, but would occasionally look around and whine a little.
The worst part of the day was around naptime. Julie called and said he was crying and wouldn't stop. They worried that they'd done something to hurt him with the G-tube (unlikely). I suspect he was just over-tired and maybe over-stimulated and probably just wanted his mommy. It killed me not to get up from my desk and just go rescue him. But I know we all have to adjust to our new lifestyle.
Fortunately shortly after we hung up the phone, Katie texted to let me know that as soon as they called, he'd fallen asleep. He still only slept about a half an hour (not nearly enough) but it was enough to restore his good mood.
I was able to get off an hour early again so I could retrieve him. This time he smiled when I showed up. It was nice to see. They said all in all, he still had a good day. He'd only eaten about 5 bites of his food for lunch, but that's what he'd normally eat at home, so that wasn't unexpected.
When we got home he took a long nap. We actually had to wake him so he would be willing to sleep at bedtime.
Hopefully he settles into his new routine pretty soon. I hate seeing him sad. I know the daycare is good for him. And being back to work is good for our checking account, so it has to be.
But if anyone gets a line on winning lotto numbers, let us know.
For now- pictures!
Robbie had a regularly scheduled pediatric GI visit today. We saw the nurse practitioner in the office whom I happen to love. She has 26 weeker twins herself, so she's a member of "the club."
Robbie was less thrilled about the visit. He really had developed quite the phobia of doctor's offices. He was fine in the waiting room, but as soon as we walked into the exam room, he started crying hysterically. He cried all the way through being stripped, weighed & measured and most of the way through our discussion about how things are going.
The good news: He weighed in at 20lb 15.5 oz, measured at 26 inches. That puts him on the growth chart for weight. About 10th percentile. Everyone oohed and ahhed over how chunky he is. She even called in the doctor to marvel over the change. There were lots of giggles about his "man-boobs" (or "moobs" as the nurse practitioner referred to them.)
The NP said the computer yelled at her because his weight gain was so great. That's both good and bad, of course.
Yes, it's good to see him gaining and looking healthy, but there are limits as well. He gained 4lb in the month of July. That's double the maximum they like to see.
I explained that we're finally getting a handle on the puking and how much his caloric needs have changed. She approved of the changes I was making and asked to tweak them just a bit more.
Right now, the plan is to keep him at 90 kcal/kilo for 6 weeks. We'll see GI again at that point for an official weigh in. If he's still gaining too much at that point, we'll drop to 75kcal/kilo for another 6 weeks. If he's STILL gaining too much, he'll earn himself a metabolic work up to make sure nothing else weird is going on.
She's not concerned about one banner month of weight gain, particularly considering how poor the previous 13 months were and how far behind he was. She thinks he just hit a catch-up growth spurt (common in preemies) and we should be fine, but we will watch to make sure. Her hope is that he maintains his growth curve of 10 percentile.
Everything else was good. We walking about his development. It's always nice to talk to another mom who truly understands the battles we face. Her twins are several months older than Robbie, so it's always nice to hear how they're doing and hear how they're overcoming their obstacles. It gives us hope.
All in all, it was a good visit.
And of course, some recent pictures!
We spent the weekend with Robbie's grandma and had a great time.
There was an ugly incident with a diaper explosion at Lambert's, but we survived without bloodshed. (Though I did consider it with the steady stream of people coming through the bathroom who couldn't be bothered to help the mother with the screaming, naked child get a paper towel out of a jammed dispenser.)
Unfortunately, I haven't been my usual shutterbug self the last week so I don't have a lot of pictures to share. (Hey, there could have been pictures of Robbie naked and screaming in a public bathroom! Count your blessings!)
On a brighter note, the boy has surpassed a big mark- twenty pounds! He gained FOUR pounds in the month of July. Goal is 1 lb/month. Ideal is 2 lb/month. So this is amazing. I haven't increased his caloric intake in weeks, he's actually now getting much closer to a normal amount of calories.
Normal, healthy infants usually take 100 kcal/kilo. There is a 20 calorie span either way that they should fall between. In the past we've had to keep Robbie at AT LEAST 120 calories/kilo to gain a reasonable amount of weight. It's been very hard because the more you feed him, the more he pukes. That, in turn, makes it harder for him to gain weight, and of course, then you need to feed him more and he pukes more.
With his massive weight gain this month, he's now getting about 96 kcal/kilo. Back in Robbie's NICU days, this would have led to either zero weight gain or a weight loss, so this is truly amazing!
The last few weeks, we've established a feeding routine that has significantly reduced his vomiting. Most of his feedings are now pumping in over 75-90 minutes. He is much pukier in the mornings, so that one goes in over about 3 hours (and he still pukes most mornings) but the daytime routine isn't so exhaustive.
Now instead of puking 15-20 times/day (which we did for months on end), it's more like 2-4 times/day. I realize most people would think "wow, he pukes every day?" but for us, that's miraculous. It's mostly in the morning, or if he gets too active while being fed.
The time involved in getting the feedings in can be challenging, but it's working and totally worth it. He also seems to be almost completely pain free (obviously puking isn't much fun, but he pukes and it's over, rather than screaming in agony for 45 minutes at a time.)
We're definitely nowhere near "normal" but the relief that comes with not having to watch him in constant pain makes us feel so much closer.
Obviously it's working because keeping those calories in him instead of puking them out is obviously working. Robbie is downright pudgy these days! It's getting challenging lugging him around, particularly in the carseat. I've never been so happy to be giving my muscles a workout, though.
I don't have a lot of pictures to prove it, but hopefully this will hold you over until I can get some more. I promise to do better this week.
Robbie has now broken 19 pounds. If only he weren't so wiggly, I'd measure him. He's definitely growing. He has very few 3-6 month clothes left that fit. He's solidly into 6-9 month clothes.
He's working on the new sound "na na na" and has been making funnier facial expressions including a scrunched up face that I think is supposed to be a cute smile and a grimace that is pretty funny.
Tonight I caught him using his index finger to spin a toy. Love those fine motor skills!
I'm wondering if his top teeth are EVER going to come in. He's been working on them for months, but the last 2 weeks we've had several days where he just seemed downright miserable and is chewing on everything. He even had a low-grade fever most of today. Fortunately he's still in a good mood, though he's not sleeping terribly well.
This weekend he got to spend time with his great grandma and great-great aunt Hazel. He was a constant source of entertainment for all.
Of course, he's still handsome as all get out.
Not much to report, really. Robbie's been very clingy and a little cranky. I think he's working on his top teeth. Still no signs of them breaking through, but they're swollen for the umpteenth time.
I like the extra snuggles, though I must confess that after several hours of insisting on being held, naptime or bedtime is a welcome reprieve. He weighs 18 1/2 pounds now- he gets heavy!
He officially hates a toy for the first time. It's a toy we gave him for Easter. He loves part of it. It makes an obnoxious repeating noise when you hit a button. He'll hit that button 20 times in a row. But the other part of the toy, you pull a lever and it plays a song. Every time you play the song? He cries. I mean, full out, sad-with-tears cries. It's bizarre and a little funny.
It takes a few minutes to calm him down afterward. I'd post a video of it, but I don't want to make him cry on purpose.
You'll have to settle for pictures.
A bubble bath in the big tub!
--Trish
A certain Robbie's grandpa was complaining that we hadn't had any new pictures of videos in SIX WHOLE DAYS, so here's a video to tide you over until I can put together a real post.
Lately, he thinks "toot toot toot" is a pretty funny sound.
--Trish
