Good news, Bad news....

Good news, Tyler is most likely not allergic to formula. Bad news, Rachel now has what Tyler has. Let's just say we spent more time cleaning up after breakfast than we did preparing or eating it.

Well he puked again.

We got so far today. But in the end he still puked. He wasn't really into eating all day and dinner just didn't stick. I did call the on call provider and had a long discussion that ended with no calling neurosurgery. We were able to give the Dr enough information to comfortably say it's doubtful the shunt has failed. We could still be looking at an intolerance issue and/or a stomach bug. We will be calling the pediatrician in the morning to see if there is anything else we can do or if we just need to give him more time.

Formula Intolerance?

We just got back from the pediatrician. We believe Tyler is having trouble with the formula. We've switched him over to a formula for kids with food allergies or colic. He's had one bottle so far and kept it down. YEAH! If the formula is the problem we should see results very quickly. If he is still having issues in a week we then go to the next step and look at the possibility of reflux.

Despite having a problem with keeping formula down for the last 3 days, he still weight in at 17 pounds and 15 ounces.

Poor Baby

We are still having issues with Tyler keeping formula down. It is so weird. He doesn't have a fever and isn't acting sick, he just can't keep formula down. I did call the pediatrician today and was referred to Dartmouth. Unfortunately I won't hear back from them until tomorrow. I don't think the poor boy has kept much of anything down today.

Penguin anyone?

Now there's a picture worth alot more than an thousand words.

16-June-2008 ->














<- Today

Tyler seems to be feeling better today, everything stayed down :-)


(Same Penguin in both pics, It's not a camera trick :-)

Not sure what to think.

Today was an interesting day with Tyler. It started off normal like any other morning at 7 am with a hungry little boy. He was happily sucking down his bottle when he hiccupped. The entire bottle bomberang right back up and covered me. We are not talking a little spit up, we are talking 5 ounces of formula all over me. Tyler is no worse for wear smiling and relativley unphazed by what just happened.

We decided that since he wasn't upset, we'd just watch him for the day and take it easy. Ben was feeding him lunch a little later and he did it again. Ben called the doctor and got the standard wait and see, this could be any number of things and there aren't enough symptoms from any one possibility to warrant a trip.

Tyler ate pretty well at dinner and held it down for a bath. He had is bedtime bottle and is happily sleeping. Hopefuly he was just having an off-day and will be back to his normal self tomorrow.

wow 1 year

A year ago today we started this blog. At the time I was almost apprehensive that we so shamelessly imitated what Gib and Abby had started a few years earlier, as it turns out their example made an extremely difficult time much easier to cope with. There is alot that never made it into these posts. I assure you it's better that way, the low-end on this roller-coaster can be *really* low.

At one point my mother bought a preemie book. Soon after the brain-bleed (PVHI) diagnosis we were over at their house and she said she was going to throw out that book, I asked why. She did not like the prognosis it gave for PVHI. I had a copy of the same book, I didn't like the prognosis either, but it pretty closely matched what the Doctors told us could happen. They did say that they had high hopes for Tyler. So do we!

I firmly believe having a forum like this to vent the fears and frustrations contributed a lot to the current status of things. The comments from friends and family with thoughts and support would often make our day. Knowing you are not alone is priceless in times like that.

This little corner of the Internet has become an important part of our lives over the last year. Thankfully it has recently become mainly a place to share pictures and milestones (knocking on wood that it stays that way). Unless Google changes their mind about recording EVERYTHING FOREVER someday (far) in the future we can show it to Tyler and he can see what a little shit he was for coming so early :-)




















In the last year that this blog has been on-line we've had 1,600 visitors, 15,600 visits.

Standing?!?

We've seen some changes this week with Tyler. First of all, he is now in a big boy car seat. My back just couldn't carry him around in the bucket seat anymore. Tyler really seems to like his new seat. He can reach the strap that tightens everything and chew on it. Big chewer these days.

The other big thing is his ability to stand with out us holding him now. We can place him standing by the ottoman or couch and let him go. Tyler can keep his balance holding on to the furniture for a couple of minutes. He has the biggest proudest smile when he's able to stand like this.


His Early Intervention review was nothing exciting. We just updated he goals.

Happy Easter! I hope everyone had a great day. Things have been well here. Rachel had a little sore throat and fever last week, but we seem to have kept it away from the rest of us. Tyler is his normal happy little self.
Tyler did have an eye appointment last week and it went very well. He still turns out an eye especially when he's tired. Between the therapist that comes once a month to work with his eyes and the doctor, it was decided he can see out of both eyes. Tyler is also working very hard to bring both of his eyes into alignment constantly. We can tell that he can focus on an object with either eye and we watch him struggle to keep both eyes aligned. In certain positions he can bring both eyes in and look out normal at an object. We discussed patching to help with vision and training the lazy eye to come in in previous visits with the doctor. This week's visit, the doctor is very pleased with Tyler's progress with eye alignment. It was also discussed that since he can focus with both eyes at any given time, he can see fairly equally out of both eyes a patch will be of little use to him. A patch is designed to help the weaker eye's vision strengthen which will in turn strengthen the eye mussel. Since Tyler doesn't seem to be visually weak in one eye, patching him will do very little to bring in his alignment. The Dr wants to keep watching him and give Tyler more time to either bring that eye in himself or declare that he needs help. We may consider doing an eye surgery to correct the mussel. We are going to wait awhile and give him more time. As long as he continues to try bringing in his eyes, he continues to focus on things with either eye, and can continue to hold alignment longer and longer, we will do nothing but watch.

We also realized that Tyler has been working with Early Intervention for 6 months now. Time does fly. This coming week we will be doing his 6 month review. We as parent and the therapist will sit down and review his progress and goals. We will also adjust his goals and create new ones. It sounds like a state mandated paper generator more than anything. Tyler is doing so well with skills. On somethings he's ahead of his gestational age (he'd be 8 months now if born in August), while others he's slightly behind. We've decided he's mentally an 11 month old baby stuck in a body with the skills of a 6 or 7 month old baby. He still has no interest in being on his tummy, which means he has no interest in crawling. Yet he wants to stand and is trying very hard to figure out how he can pull himself up on furniture and such. Luckily he doesn't have the strength to do anything about it yet. Slowly he is resigning to be more open to the idea of tummy time and rolling to his tummy. In the last 2 weeks, we've got him to stay on his tummy without screaming for about a minute a couple of times. A minute doesn't sound very long, but for this kid it's like an hour. At this point we don't think he's delayed due to brain damage, we think he learned that tummy time is very uncomfortable position to be in, visually hard to see correctly, and hard to play in. Time and gentle persistence will help him. He may not roll over well or push up onto his arms when on his tummy yet, but he can sit unassisted for hours with the ability to twist and reach well beyond what an 7 or 8 month old is suppose to be able to do.

The other struggle Tyler is dealing with is wanting table food and not having any teeth. He LOVES to eat. In the last month, Tyler has given up nursing on his terms and now takes a bottle or drinks with a straw. He also wants to eat what we are eating now. We are able to give him a few things like canned pears and very soft cooked carrots. Things like pasta and bread are hard to give him with no teeth. He is funny trying to eat them though. I expect the next couple of months to be very tiring as Tyler tries his best learning to be mobile and eating new things. He is a very determined little boy who know exactly what he wants and is showing the ability to solve the problems to get what he wants. He is definately his parent's child.