Eve is sick

About five days ago, Eve began coming down with a cold. She developed a cough and we took her to the doctor yesterday to make sure there was nothing going on with her lungs. She sounded clear. So we've been giving her advil, decongestant, and honey for the coughs. Today has been bad. She's miserable. Her nose is running like faucet with thick snot and she's had a horrible hacking cough all day. Her appetite is totally off. She's been drinking some, but not much. We've given extra fluids through her gtube. She choked a bit while coughing after dinner and couldn't catch her breath. Scared herself and us. She has a fever of about 102, so we're going to call the doctor. She's been so healthy lately, I feel out of practice with this. I think it's going to be a rough night.

Eve's new bed

Eve got a new bed last week.  We are so very excited.  It's a Sleep Safe bed and it's wonderful.  As you can see from the pictures, the bed is higher than a normal bed with is much better for our backs when we transfer her in and out.  There are rails on both sides that run the length of the bed (unlike her previous bed that had toddler rails that were about as long as she is).  The mattress is snug against the rails, so she cannot become entrapped.  Changing the sheets is so much easier as well!

The first night Eve was in the new bed, she was a little freaked out and took a while to get to sleep.  However, since then she has had no problem!

Christmas 2011

It's been a quiet Christmas this year.  We are not traveling for once, which is a blessing.  It's just so very hard to travel with Eve.  She is at the point where her equipment needs are overwhelming.  So, the grandparents have graciously agreed to visit us instead.  Grammie and PaPa are coming this week and Oma and Pop are coming next week.  We are very excited.

Christmas morning was very nice.  Eve didn't seem to really care that much about Santa.  We are guessing that the real excitement will happen as Seamus grows older.  Eve did enjoy unwrapping her presents, but not as much as we thought.  She was a little checked out all day.  Hopefully it will be better when the grandparents are here to inject a little more excitement. 

visitors

Paul, Tossy, and Henry came for a visit on Christmas Eve.  We're so happy that they were able to swing by on their travels.  Henry has grown so much since we've last seen him (he's about 4 months older than Seamus).  Here are some shots of the boys together. 

Seamus gives the scoop.

Reindog parade

Earlier in the month, we went to our town's "Reindog Parade." We dressed Josie up and marched down the center of town with every other crazy dog owner. It was chaos and lots of fun. It was hard to walk and film it, so please excuse this shaky video. I was trying not to trip on the animals. But, we saw some of Eve's friends (at the end of the video). Lots of fun!

Playa



Word to my mommy.



4 month well visit and wheelchair

There are many things I need to write about. But, I'll start with the best: last night Seamus slept through the night! He slept from 7pm to 6:15am! What a wonderful sign of nights to come.

He had his first ear infection almost two weeks ago, but we got that taken care of ASAP. Amazing what a few doses of antibiotics can do for a kid's comfort. We also had Seamus's 4 month well visit. He's 25.5 inches long (50th) and 13lbs 7oz (10th). So, we're increasing the amount of milk in his bottles during daycare. This slight drop on his growth curve may be because he was sick two days before the well visit. Seamus has also been eating cereal and fruit/veggies twice a day now. So far, little man has had apples, peas, and bananas. He loves his food and has not turned his nose up at anything - not even his medicine. He laps that up like a little kitty and cries when it's finished.

Eve is doing well. She just had her wheelchair adjusted. The seat is wider to accommodate the growth she's had. We still need to work out the kinks (a new tray needs to be ordered, the headrest needs to be adjusted, the tilt mechanism needs to be fixed, etc.) but we're working on it. Her next appointment with the mito doc is June (we are skipping the December visit). We also have an appt with the Physiatrist in June, which is good because she has been scissoring her legs a lot. It's been hard to changer her diapers. She's also been having episodes when she gets totally freaked out in the bathtub - so scared of falling that she screams and cries. Nothing about the tub or bath chair has changed. I hug her and hold her while she's in the tub and it doesn't help. I'm not sure what's going on. There are several possibilities. She could be getting sick and her balance is off. This could be a cognitive decline. Who knows. Other than bath time (and it's not every time, btw), Eve is super happy. She loves her brother and helps put him to bed every night.

First Cereal

On Thanksgiving, Seamus had his first bowl of cereal (oatmeal).  It was a hit. 

Uncle Scott visits for Jim's birthday

chillin'

What do you mean I can't have cake?

highchair

pictures

Doesn't Josie look thrilled?

Princess Eve

 

A friend of mine knit this crown for Eve.  Isn't it adorable??

Halloween

Halloween this year was fun. Eve was a princess. Unfortunately, we were in a rush to eat dinner and head out to trick-or-treat, so I really didn't get a good picture of Eve. She had a princess dress over her fleece, a crown, and some make-up on. Kate and Eve made cardboard decorations for her chair to make it a throne. Seamus had on a teddybear snowsuit.  We went to a neighborhood near Eve's school because it is flat (we live on a hill) and would be easier to push her chair house to house.  I think Eve was freaked out at first and didn't know what was happening.  She started to get upset when we left the first house, but then quickly caught on that each house would give her candy.  We ran into several of her (and our) friends while we were out, and that was so great.  It's hard to recognize people in costume, but everyone recognized Eve.  Here's a picture that one of her teachers took of us.  Eve's not so good with flash photography.  :)

It was pretty cold out (and we still had snow on the ground!), so we didn't stay out long.  That was probably for the best.  It was about the experience for her, not the amount of candy.  Oh, and she absolutely LOVED having me put make-up on her.  She pretends putting make-up on with Oma, but this was the real deal.  What kills me is that the girl has lips that were MADE for lipstick.  Luscious.  When she's 14, I'm sending her to school with lipstick on, I don't care.  It's a crime not to. I'll have to put some on her and take a picture.  Speaking of pictures, I'll look at the ones that I took to see if I got any with her eyes open.  Happy Halloween!

Dragon Mom

This is a very poignant article from the NY Times that was brought to my attention by my friend, Janet.  Well worth a read.
http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html

13 weeks

Seamus is getting so big.  He's getting really good at head control and gives lots and lots of toothless grins.  He's a good baby and is a pleasure to be around.  He has really discovered his hands and loves chewing them.  He has started grabbing things (my shirt, my hair, his blanket) and also likes to babble. 

drawing

Here's a picture drawn by one of Eve's classmates.  Don't you just love the wheelchair?  I got misty. 

Fuzzhead

Seamus has a lot of hair. After his bath it gets curly when I dry it with a towel. It's the funniest thing. But it will dry straight. Here's a picture to give you a laugh.

He's doing well.  At 10 weeks we went to the doctor for his well visit.  He's 23 3/4 inches long (70th %) and 12lbs 4 oz (40th%).  The weight doesn't show much increase from two weeks prior, but the weights were taken on two different scales.  I am not at all concerned. Oh, and his head is 80th%.  Maybe they measured that hair.

Also, we started sleep training him last night. It went pretty well. I put him down awake and let him cry for 3 minutes. I went in and comforted him without picking him up, left, and then let him cry for 5 minutes. I comforted him, and let him cry for 7. That was it. He fell asleep. He woke up again at 9pm and we started again. He also woke up at 11:30pm, which is unusual for him. I nursed him and put him down asleep. He woke again at 4:20am and I nursed him. At 5:30am he was up and crying, so I set the timer for 3 minutes. He fell asleep during the 5 minute span. Tonight, we did the 3 and 5 minutes. He fell asleep after 2 of the 7 minute span. We'll see how the rest of the night goes.

*update* Seamus slept from 8:20 pm until 2:25am. I nursed him and put him down. He slept until 6:30am. It was a great night. Oh, and we ditched the swaddle and are using a sleep sack.

Neuro appt

Last week, Eve had her semi annual neurology appointment. After some debate,we ended up taking Seamus to daycare (rather than bring him on the long car ride) which turned out to be a good thing. Then Jim, Eve, and I headed to Springfield for the neurology appt. Eve started crying in Pittsfield. We pulled over and checked her out. We couldn't find anything wrong. So we carried on figuring she'd settle down in a few minutes. She cried for the next 1.5 hours. Nonstop. Until we got to the doctors office. We think she was scared, but have no idea why she wouldn't calm down. Most of the trip is highway driving, and we kept thinking, "Surely she'll stop any minute. Surely she can't cry the whole way there." She also cried a lot at the doctor's office and finally relaxed when she realized we were just talking with him and there was no procedure. The drive was an awful, incredibly stressful experience. I felt so helpless. I just cannot imagine this being our new reality for car trips. Most of Eve's specialists are 1.5 - 3 hours away.

I asked the neuro if we could see him once a year instead of two times (yes). I mentioned the possible seizures and he didn't seem concerned. The last episode was nearly two years ago, so he didn't feel this warranted anything other than monitoring. He also upped her baclofen, adding two doses of a half pill (morning and afternoon). Hopefully this will relax her legs and make diaper changes easier, but we need to call if there are side effects (most likely sedation). Finally, he recommended an OTC medicine for motion sickness and gave us the dosage. He said that mito patients often have migraines, and that motion sickness goes hand in hand with migraines.  I thought that was interesting.  The neuro noted her hands being more clenched and that she has trouble holding her head up.  We are to call if anything changes. 

The trip home went pretty well.  Eve watched a DVD and Jim slept.  I enjoyed the fall foliage.  Eve has been doing great in the days since the appointment.  We haven't noticed any changes yet with the increased dosage of baclofen.  She is still enjoying school and loves to laugh at her brother. 

keeping track

Seamus weighed 12 lbs 3 oz on the day he turned 9 weeks old.  I can't believe how big he's getting!  He's quite smiley when he's in the mood.  Here are some pictures I took of him:

My mom asked me if I was going to keep a baby book for Seamus.  I've decided not to. The blog is my digital baby book. I post pictures and write about development.  I stopped writing in Eve's baby book when she started missing many milestones because it was just too difficult for me. Who wants to fill in "age baby first rolled over" when she's 15 months and still hasn't done it?  A friend once told me you can have a company print your blog into a book.  At this rate, it's going to be one hefty book!  But, it's a record of both children and I think I'm just moving along with the times. 

Three little ones chillin' together

seizures?

Eve may have had two absence seizures today.  The following was written by her school aide in the communication book:

"On the bus ride to school, Eve was smiling but only the let side of her face was.  [The] right side completely drooped, more so than usual.  At school she had an 'episode' where I seemed to lose her.  Staring off, no blinking, unable to get her attention.  The first time lasted about 15 seconds, the second one during snack, lasted longer, about 30 seconds.  [I] called her name, gently tapping her shoulders, no blinking no response. She seemed confused immediately after, but continued on with her snack.  Very quiet, but no other episodes after that."

We have an appointment with Eve's neurologist in 2 weeks, so we'll mention this to him.  We'll see what he says.

baptism weekend

It was so much fun getting all the kids together last weekend.  We don't get to see them very often, so it was just wonderful.  It was also cool to show my brother around the area, since this is the town that our grandmother was born in (even though she spent nearly all of her life in Philly).

Left: My grandfather in 1938   Right: the elk today 

Dave and the kids at the top of Mt. Greylock

Eve, Giovanni, Alex, and Bella

Eve and Bella laughing

Trina,  (a tired) Seamus, and Dave

Oma, (a surprised) Seamus, and Pop

This was one of approximately 300 shots.  Five moving targets - this was the best I got.

How we all felt at the end of the weekend

Baptism

This past weekend, Seamus was baptized. Dave and Trina are his godparents. He wore a baptism gown that has been in my family for decades.  It was made for my father for his baptism, and just about all of us have worn it (even Eve).  Seamus was so good during the baptism.  Here are some shots from the ceremony:

Eye'm jealous

Eve's 6 year well visit

Eve's eye is MUCH better. The swelling is nearly gone.

Today she had a well visit with the doctor. No biggie. She is 38 pounds and 40.5 inches tall. Still my little munchkin. Oh! And she got a flu shot and didn't cry!!! What a little toughie.

Mosquito 1; Eve -1

Well, the bug bite got a little worse this morning. A lot worse, in fact.  We gave her some more antihistamine.  It looked a lot better by this afternoon.  But, here's a video of the peak of the swelling.  Poor kid!

7 week weigh in

Seamus is 7 weeks today and 11 pounds 9 ounces.

Mosquito 1; Eve 0

Eve went for a walk yesterday afternoon and got bit by a bug. She had a few small raised bumps and her eyelid got a little swollen. It looked about the same this morning. When she got home from school it was a whole other story. After a call to the doctor and a trip to the pharmacy for antihistamine, we hope she's on the mend.  Poor kid!!!

protective bubble

So I had my 6 week postpartum visit with the OBGYN this week.  I really like my doctor.  Anyhow, she asked how things were and in explaining how difficult the week was I started crying.  No surprise.  We then had this really great talk about the challenges Jim and I are facing.  We are essentially caring for two infants.  One just happens to be over 35 pounds.  The doctor said that the effect of having a second kid is not additive, but exponential.  In our case, she said it is even more so because of the needs of Eve.  I explained how I'm so very scared that Seamus won't be healthy.  She said that people live in a protective bubble in which they believe that bad things happen to other people.  However, that bubble was burst for Jim and I with Eve's disease.  So, we worry more intensely, and we will be hypersensitive to every milestone that Seamus makes.  I've been thinking about this a lot.  I think that's why I tend to focus more on the negatives when people ask us how things are going with Seamus.  I don't like to talk about the good things.  I'm so afraid that if I say it out loud, or it appears as though I am bragging, that it will be taken away from me.  I know this is irrational, but it's how I feel.  The first year of Eve's life was filled with blissful ignorance.  We thought she was going to be this superstar (and in her own way she is....just not the way we expected).  All those things we expected just never happened.  I desperately hope this time is different.

First day of school

Today was Eve's first day of school (mine, too). It was a crazy hectic morning.  Jim got Eve up and dressed before he left for work.  Seamus woke up earlier than expected and was screaming. Then I needed to feed Eve and myself and get us ready for school/work.  I also had to keep Seamus happy and get him ready for his second day of daycare.  I needed to fit in  a feeding for him before we left the house, but I had to wait until Eve's bus came first. Oh, and did I mention it was pouring rain?   It was an incredibly stressful morning. Here's a picture of the little cutie waiting for the bus.  It's not the best picture, but I didn't have time to check that I got a good shot.  She was very excited.

Seamus?  Not so much.  Here's how excited he was:

Actually, I think I was making the same face.  But, tears aside, we all made it to where we needed to be on time.  I was just totally frazzled by the experience.  One day down, an entire semester to go.

By the way, everyone is doing well at their respective location.  Eve had a great first day, I survived mine, and Seamus hasn't been too fussy at daycare.  Speaking of fussy....I need to go pick up the little man right now.

Eve farting around

Seamus' 4 week well visit

Seamus had his 4 week well visit today (even though he's 5 weeks old). He weighed in at 10lbs 14oz (65th percentile), 23 inches (87th percentile).  He's doing really well.

Here is a video of some happy time he had the other night:

Seamus is five weeks

Seamus is five weeks old, and this morning he gave me two big grins. Adorable. I can't wait until they become more frequent. Also, I talked to the lactation consultant today and she weighed him. 10lbs 11oz!! He's packing it on. Friday is his 1month well visit, so we'll see how long he is. He actually had a calm and happy night tonight. A blessing after many fussy evenings. He spits up a lot, and I plan to ask the doctor about that. I took a cute video that I hope to upload tomorrow.

cry baby

All is well in our house. Grammie and PaPa were here for a week and a half. Eve had her buddy PaPa to keep her company and swing her in the swing.

Seamus grew another half pound while they were here.  On Monday, 9/15, he weighed in at 9lbs 5 oz.  He's incredibly strong and has a terrible temper.  Actually, his temper seems to have gotten worse.  At first he had one or two fussy periods during the day, but over the last two days he has been incredibly fussy during the whole day (when he isn't sleeping or eating).  I'm hoping it's just a growing phase. Eve continues to like being around her little brother.  And her dog.