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.

All Smiles

We seem to have our happy, flirty little boy back! He seems to be feeling much better. I still hear a slight rattle in his airways and there is still a slight cough at night, but over all he seems over the cold. Now Tyler is his normal smiley and very active self. He really wants to move on his own and arms and legs are constantly moving. We just need to convince him to put weight on his arms and I think Tyler will be gone. When Tyler is on our laps, he will mimic crawling around on us. He loves to find my necklace and try to suck on it. I guess we better baby proof the house.

I might get some sleep

The last two or three days we've seen more of our happy little boy and our energetic little girl again. I'm crossing my fingers that the virus is on it's way out and nothing else will crop up for a long while. Ben also came down with it. I'm exhausted from sleepless night listening to my loved ones coughing up lungs and worry that it was more than a cold. But everyone is fine, just some lingering sniffles and a cough here or there.

This has been a fast paced couple of weeks for us.

The last 3 or 4 days have been long and tiring. Both Rachel and Tyler developed colds and fevers this week. I brought them both in once the hacking coughing started for both of them. It wasn't in either one's lungs and Tyler's RSV test was negative. All good things to hear. Rachel seems better yesterday and today. She still has a cough here and there but it doesn't seem to disrupt her life too much.

Tyler sounds like he's hacking up lungs and wheezing. The Dr said we can use the nebulizer to help the wheezing. He had a very hard time breathing Wednesday night and was miserable on Thursday. He was really wheezy and having a hard time breathing. The nebulizer helped for a few hours then he was having problems again. Brought him back to the Dr to make sure his lungs are still clear which they are. We are starting to wonder down the asthma road with Tyler. It's still to early to really tell, but there is a pattern forming when he's had colds. The cold really isn't the big problem, it's his ability to breath. It looks like his airways are constricting and becoming inflamed which causes a lot of mucus and wheezing. The nebulizer medicine is the same fast acting medicine used in rescue inhalers for asthma patients. He was also given another nebulizer medicine, a very slight steroid to help the inflammation in his airways. He takes this for a month to get through the rest of cold season. At his 12 month check up we will discuss the next steps. It's no surprise that he could be asthmatic. I have asthma like symptoms especially during colds and allergy season. Couple that with his prematurity and lung complications, we are lucky he isn't full fledged asthmatic yet.

Before these colds, Tyler had his 9 month check up. He was 16 pounds and 2 ounces and looking very good. At nine months they do a figure prick to check lead levels and for anemia. Tyler came back very slightly anemic. So off to the lab to get a full blood analysis. Of course Tyler is he normal flirty self making it hard for the tech to think about stabbing him with a needle. Tyler has never been a easy blood draw. In ICN it got to the point where they just referred the draw to the best nurse on duty and it still took 2 to 4 tries. Well he isn't much better. The poor girl thought she had one in his arm, but it rolled away. After searching with the needle for a minute and him screaming I said it might be best to try someplace else. She hunted for another good 10 minutes for her next spot--his hand. Before she stabs him, she says that the next step would be for me to take him to the hospital if she can't get blood here. Thankfully Tyler cooperated and we got the blood out of him.

If that wasn't bad enough, it took a full week to get the results (which he is mildly anemic) and a prescription for iron. I'm not sure why it took so long. When I picked up the medicine, I asked how he should take it. He has to take it an hour before he eats or 2 hours after he eats. He can't take it with milk, cereal, whole grain foods, he can't lay down for 30 minutes after taking it, and should drink 8 ozs of water or juice with it, 3 times a day for 3 months. I looked at the pharmacist, "He's 9 months old and still eats every 2 hours!" I got a shrug and a "well that is how you are supposed to administer it." I asked the Dr about this yesterday while I was there, I just need to make sure he takes it with some vitamin C to help with absorption. I"m not sure that helps, but here goes nothing.

Other than that everything is running smoothly. Tyler's development evaluation in Lebanon has been rescheduled in June due to a medical leave. When able to breathe, Tyler is a happy, flirty little boy.