Wednesday, September 30, 2009

Ding Ding

We have quite a few short videos of Robbie just doing random things. This one was right after he figured out how to bang things together. Not terribly exciting, I suppose, but it was a milestone both his Occupation and Developmental Therapists (and we!) were glad to see. Plus, you know, he's just cute!

video

--Trish

Sunday, September 27, 2009

Pictures!



Hey there good lookin'.



Chubby cheeks you can't resist.



Wearing my daddy's old pajamas.



Ready to go to daycare early one morning.



Grandma shows me the outside world.




Story of my life lately. Breathing treatments.



You'd think they could get me a hookah or something.



Seeing my first rainbow.




Family night out.



Grandpa's so fun!



I might be needing a haircut soon.

Tuesday, September 22, 2009

IFSP

From Robbie's blog:

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

Monday, September 21, 2009

Here we go again

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

Tuesday, September 15, 2009

Quickie

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.

Monday, September 7, 2009

Checking in

Sorry for the quiet.
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.

My MIL 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