Baby Boy,

Tonight was your last dose of phenobarbital. I don't think you've even been getting much these last few days because you fall asleep during bottle time, which is what I mix the pheno in. Nonetheless, it was the last night and it's been a long phenobarbital road.

On Friday you'll be 6 months old. Half of a year! It's been fun watching you grow and change. You've been sitting up on your own for the last few days and love it. When we pick you up you want to stand and arch your back to say "Let me do it!". You're also rolling over onto your tummy no matter what is going on; bath, laying on the floor, bed. You're always on your tummy at night which scares me but you seem to not have a problem making sure you breathe!

You want to crawl so bad it's not even funny. You're starting to pick your torso up off the ground and bending one knee at a time. I wonder if you'll be more like your brother; barely crawling and going straight to walking at 9 months ....

You are enjoying baby food now, so far peas seem to be your favorite. You eat just about 3 times a day with the food and love it! I feed your in your car seat and your little feet start kicking 100mph when you see the bowl/spoon.

Will give you stats on Friday when you have your well-child check with Dr Pelinka.
Love,
Momma

5 months

It's been a week or so since you turned 5 months old. Developmentally you're right on track, and a tad ahead on some things. You are rolling over from back to belly now all the time. The only thing is, is sometimes you get really mad when you're rolled over because you can't crawl and haven't figured out how to Army crawl yet, so you get frustrated. We are tapering you off phenobarb and now we're down to half of your dose. I've found that you are more fussy now. I don't know if that is age, or if that's the tapering process. You aren't very happy in one place for very long. If I put you in the Johnny Jumper, you're only happy for 10min. Then you cry and I move you to the floor, which you're crying in 10min. You just want to move and go that you don't stay happy long.

You and Maysen get along great. He truly loves you. I had wondered if we were going to have any problems with him hitting or being rough with you and we really haven't. He gets down and talks in a baby voice to you, and you and him often giggle amongst eachother a lot. When you cry, Maysen seems to know why you're crying which is mostly "Griffin needs a bottle!".

We have started babyfood with you because it doesn't seem like you're very satisfied with 8oz every 3hrs. So, you like having consistency in your belly. So far you've tried bananas, sweet potatoes, and green beans. I mix all these in rice, because you don't like the watery consistency plain. You sure get messy, but you eat it all! You are trying to work on the tongue-thrust part of it, and it's hard to feed you sometimes. But toward the end, I just put the bowl under your little mouth and you suck it right off the spoon. When you decide to blow/spit with all your might I have to take cover as you like to do that lots now!

Your brother is in Baker City with Gr Sherrill and Papa. It's quiet around here and you're getting a lot of attention. I think you're eating it up!

Love,
Momma

OHSU visit

We just got back from the OHSU adventure. Wednesday you had your MRI. That was an ordeal. We were to arrive an hour early so that they could put lidocaine cream on your IV sites so when they started it, you woulnd’t feel it. Well, the receptionist came out and put the cream on the tops of your feet and one hand. I thought it perhaps was a bit fishy, but what did I know? After waiting the required hour, we went back and the RN right away said that you had no visible veins in the feet. She tried your hand, which you screamed bloody murder on. She called the anesthesiologist who came and tried the outside of your foot (no cream was put there) and while you continued to turn purple with screaming so hard, she too couldn’t get it. They informed us that they now needed to put you under with the “gas mask” as I call it. They gave me a pacifier with some sugar water and I rocked you while he fell asleep until they were ready. When they said we couldn’t go back with you, I informed them that I would be going back with you and I would talk to whatever supervisor I needed to because I would kindly tell you/her what I thought of their inadequate use of the lidocaine cream. Needless to say, I went back with you and held you while they put the mask on you. You never woke up and drifted right off to gassy sleep. I have to admit, I was getting a big drowsy as I caught wisps of curly air coming from the mask.

We saw Dr Koch and when he walked in he said, “The good news is that there is a lot of good news!” He was really encouraged because of the fact that your EEG done on May 9th was completely normal now – the low seizure threshold found in February had resolved. The MRI showed no surprising results and Dr Koch put it in analogy form like this: When You got sick, it was like he had fallen and really skinned up your knee. The MRI done right after your illness showed swelling, acute trauma, and inflammation. On the MRI done on Wednesday, none of that was present and instead just the scars remain. Dr Koch anticipates he might forever have those scars, but developmentally, those scars have not affected anything. The area of the brain where the scars are present is a rapidly growing part of the brain and hopefully the scars will diminish as the new tissue forms. Dr Koch was more impressed with the EEG because although the MRI is a nice picture-taking tool for diagnostics, it doesn’t necessarily reflect functioning. The EEG showed 1hr of pure normal brain function.

You'll see Dr Koch one more time in 6mo, closer to your 1yr birthday to check your development one more time. If everything goes as he anticipates (which is developmentally appropriate), then he’ll discharge you from OHSU care.

Closing on the best note ever: we have been given the OK to start tapering you off of the Phenobarbital. It will be a slow 6wk taper, but eventually you will be Phenobarbital-free. As Dr Koch left the room, he said, “He’s now thrown into the ‘Normal Kid’ Bucket’”. Ahhh, finally.

Month 4

Dear Fin,

You are 4 months old now. You really have grown leaps and bounds since last month. You are still on phenobarb but the dose has not been changed since it was made 6cc at night. We have started giving you a tiny bit of rice on a spoon. At first you couldn’t figure out how to swallow, and your tongue thrust just would spit it back out. Now you suck it right off the spoon and you think it’s delicious! We only give it to you at night, which has made you more full (before no matter how much we fed you, you were always hungry) and you sleep all night now. You get your rice about 7pm, then your bottle around 8pm and you sleep soundly until about 6:30am. You get fed and will snooze back off to sleep until you’re ready to get up at 8am. You nap from 10:30 to noon, then again around 3pm for a couple of hours if your brother isn’t too loud. You figured out your own schedule and we just go with it – but it’s pretty much the same every day!

We have to trick you by letting you fall asleep in our arms, then putting you in your swing during your naps, because you won’t nap in your crib. You WANT to be put in your crib at bedtime, but it’s like you feel you’ll miss out on something if you’re in your crib during the day. But we put you in your crib awake at night and you go right to sleep!

You are such a talker! When I lay you on the changing table you start talking away. But now, you suck on your fist. You don’t want to suck your thumb – instead you suck on your whole fist. It’s even chapped at night! Since giving you rice you poop about 3 times per day, but you’re happy that you’re a full baby now.

You are such a wiggle worm! If we put you on the ground, you will push up with your legs and in about 10min you have yourself faced the other direction! You also love your new BUMBO seat. It lets you sit upright and you just love to stare at your feet and look around. You’re very content.

You are starting to laugh, too. If something happens you think is funny (usually funny faces/voices) you’ll giggle. It’s very cute. You can identify things held out and you’ll grab them and pull them to your mouth to explore. You’d much rather just have your fist though.

You’re starting to show signs of bad eczema, just like your brother. Mainly right now it’ son your sides and side of your leg. I keep Aveeno on it and have been putting hydrocortisone 1% on at night. I hope you don’t have big problems like your brother. Not fun!

Will close for now. My love continues to grow daily.

Month 3

Dear Griffin,

You are 3 months old already. We had Easter a few weeks back and you weren't real sure what to make of everything. That will only get more fun as the years go by. You are doing so much now! You are a very fussy sleeper, meaning the elements have to be just right. That usually means that someone is holding you, you are in your swing being tricked as though you're being held, or it's night-time and you're in your crib. Otherwise, noise and light effect you and you refuse to sleep.

On March 22nd you slept through the night for the first time from 10:00pm-7:15am. It was very pleasant! You are eating rice now in your bottles from time to time as you just don't get enough satisfaction from just plain formula anymore - you want some consistency!!

You are very strong and love your Johnny Jumper. You stand and jump in that thing and get really big grins and smiles on your face. When it's rest time, if you're laid down on the diaper changing table, you start talking up a storm! Usually a lot of sideways grins and then "oooooooo"s and the squeels.

You have found your hands now and like to suck and slobber all over them. Thankfully you are not a thumb sucker and not fond of the pacifier either. For now, you're satisified with just sucking on the sides of your fist, which is just fine for me! You have very dry skin - the top of your tummy, scalp, sides of legs/arms, and face is the worst right now. We're trying Aveeno baby lotion and Baby Oil baths to help. You don't seem to mind.

That's all for now. You're getting over yet another cold right now that I think YOU got and are spreading to all of US for a change. Love you very much.

Momma

2 month check-up

Fin,

Yesterday we had your 2 month check-up with Dr Pelinka. It was a great visit! For once a doctor got to see you "real" and not on phenobarbital. Because before we were giving you the pheno twice a day, every time you saw a doctor you were on it. Therefore your tone always seemed to be "low". Well, now that we're giving it all at once at night, she got to see you hold your head up, sit up, try to stand, kicking with your legs. She was very impressed. She said you had absolutely no abnormalities and developmentally you're right on target.

You smiled at her, talked, and sang to her. She loved it! You have a little heat rash on your chest and a rash on your face, due to the viral cold you have. Since we hold you on our left side all the time, we need to start holding you on the other side too so your head doesn't end up malformed!

You got 3 shots yesterday, and boy did those suck! The nurse that did them I don't think knew what she was doing as far as giving them to a baby. She did them so slow! You screamed your head off as she put 2 shots in one leg and one more in the other. When we got you home, you continued to scream if your legs were touched or if you flexed them and used your muscles. I started giving you Tylenol around the clock and that seemed to help. Today you were a little "off" but much much better. Dr Pelinka wants to repeat the immunology studies one last time as recommended by the doctors at University of California so we'll do that next month. I couldn't do that to you the day you already got 3 shots!

Overall the report we got is that you are more than a normal baby with no abnormalities. You're right on target with everything.

Weight: 11lb 7oz (50% percentile)

Height: 24.5 inches (94% percentile)

I think you might end up like daddy - tall and skinny. Your next check-up in 2 months, at your 4-month check up.

Love,
Momma

Finny,

You have been really fussy the last couple of nights, starting at around 6:30pm and lasting until about 10pm. I have found it's mainly because you stay up all afternoon and then you find yourself overexhausted and can't go/stay asleep. This afternoon I'm making you stay asleep this afternoon with hopes that you are OK this evening. One thing is for sure, the $$$ we spent on this swing was worth every penny! (You think so, too!)

Another weird thing we noticed are huge lumps almost like you're teething on your lower gums on the sides - almost like molars! I know you're too young to be teething so this has me quite perplexed. Maybe Dr Pelinka will have some ideas when you see her on Thursday for your 2 month check up.