Christmas

Christmas Eve we read the Christmas story. Dani decided which characters each of us should be and grabbed her toys from her nativity set to represent each of them. She used James' baby blankets as our costumes.Here are the gifts James received in his stocking and two monkeys from Uncle Jake. James loves his wubbanub monkey. He doesn't suck on the pacifier, but prefers tasting the monkeys tail, feet and hands.
Dani gets very jealous if he is on his monkey mat, so she always has to join him.
Here are the presents from their stockings and Santa. James got a water fountain for the tub and Dani got a v.reader. They each got DVDs which Dani has already watched a couple times. Nana and Papa gave me a Beaba baby food maker. I'm anxious for James to be old enough to try solids and may end up making some before he is ready just to try it out. I do have videos we may upload later or pull pics from.

4 months old

James is now 4 months old! Time flies.

Here are his photos this month. These were taken a couple days late, but his dermabond had finally fallen off (last Sunday), so he doesn't look like he has a "huge booger" as a three year old at church pointed out.

This Past Month James has started or continued:

• Sitting up with slight support
• Tripod sitting on Nana's lap
• Imitating sounds (Mmmm and gurgling)
• Tries to sit up when lying down
• Pulls to a sitting position with no head lag
• Pulls to a standing position and supports his own weight while standing. He LOVES to stand up and sit down over and over again.
• He finds random things funny (facial expressions, bumps in the car, his sister)and has great belly laughs.
• He also will laugh if others are laughing but you can tell it is more of a social laugh than other times.
• He is very ticklish and will laugh, squirm and squeal when he is getting dressed or getting his diaper changed.
• Holds his bottle
  
  
• Rolls to his side
• Relaxes and goes to sleep if I sing
• Grabs toys and inspects them
• Feels things with his fingers like he is figuring them out
• He smiles and talks to himself in the mirror
• Smiles and talks to everyone (especially his LOVED big sister)
• Watches his sister dance around the room and reaches for her toys if she leaves them near

Sleep:

Right now James sleeps in the car seat because it is portable and keeps him upright in case of reflux. Reflux is really nasty with a cleft palate since it comes up his nose. It is also nice the it keeps him somewhat cuddled. He likes to have his cheek pressed up against the sides of the seat. As a 3 month old James did not sleep very well and I considered trying sleep training, but realized it would be worthless since he was going to have surgery and take a while to recover anyway. He sleeps well with codeine in his system, but otherwise was a little restless all day and night. Luckily that changed the last 2 nights he has slept very well.

Pain Control:

Up until yesterday, James had been demanding Tylenol daily. Ironically the first few days after surgery he had less Tylenol than later on. The last few weeks of the year he would fight eating unless he got 0.1 mL of Tylenol to start off his bottle. I don't know if he just liked the taste after taking it so much, or if he would drink more to get rid of the taste. Last week he had two doses a day (one in the morning and one at night). Yesterday was the first full day without Tylenol, though tonight I gave in and gave him a dose before bed since he just wasn't calming down and had been somewhat fussy for a few hours.

The last couple days I've been having to force him to eat when I know he is hungry. After about 5-10 minutes of fighting him, he finally gives in and eats and gets angry at me if his bottle runs out before he is full. If someone was watching they would wonder why I was forcing my child to eat because he will adamantly turn his head away from the bottle and screams like I'm torturing him. But as soon as he starts taking the bottle he is obviously hungry and gobbles down 5 or more ounces. It's been difficult because I can't feed him while pumping like I would normally do and when he is fussy I just can't get anything done.

I'm wondering if it is pain because his lip will not be fully healed for another 3 weeks. Or could it be that his tummy hurts because he has had a lot of reflux this week. Or is his palate sore and does he need a insert to keep his palate from rubbing too much? I'm going to watch him a few more days and if this doesn't get better I'll have to talk with the doctors about it.

Surgery Update

I'm so far behind on my posts that I started to avoid posting all together. So my compromise is, more pictures, no photo editing, fewer words, and maybe it will be posted. What I assume everyone is waiting for is an update after surgery.

I love this little outfit because of the puppy on the front. I've always pictured James' natural smile like a puppy dog smile because his top lip forms two Us and looks like two smiles. Every time I tried to take his picture with this outfit, he was either asleep or grumpy so I didn't get the picture of his puppy smile with his puppy outfit. I tried one last time the morning of the surgery, but this is the best I got.

After we were admitted to pre-op, James showed off his adorable smile. He also talked and talked to everyone who came into the room. There were other kids screaming down the hall, but James was happy and cooing. The nurses LOVED it.
I had to get pictures of this huge smile before surgery. I was so worried that it would hurt him to smile and he would smile less afterwards.

laughing away
James fell asleep in my arms shortly after this and just before I handed him over. He woke up when I gave him to the Anesthesiologist.
Surgery went well. We got text message updates as milestones were made which was very nice. The tubes in his ears were placed first. The lip surgery went quicker than we expected and we tried to get him in for his second MRI/CT scan that day, but because of an emergency the scanners were not available.

James' hearing test went much better in his bad ear but was strangely worse in his good ear. So, he has some hearing in his right ear, even if it is a severe to profound loss, at least I know he has nerves responding somehow there. His left ear still showed a conductive loss which we expected to get better after tubes, but it was actually worse on some frequencies. The audiologist and ENT say that the anesthesia does not have an effect on evoked potential hearing tests, but anesthesiologists and neurosurgeons disagree (as does the literature). However when I talked with our ENT at the follow up appointment on the 29th and asked him about the drop in response, he said "15 decibels" is within error range for this test. He still denied that anesthesia has an effect. I wonder if Anesthesia does have an effect, but it is just marginal in comparison to the 15 decibel error range which seems kind of large to me. Friday we have another audiology appointment doing a behavioral test to get a better picture of his hearing, and then a hearing aid consult since his one ear needs a hearing aid ASAP. By having a binaural hearing loss (loss in both ears) he qualifies for TONS of free programs in Denver (sign language instruction in the home for us, Early Intervention speech and language therapy, Sign Language Reading programs etc).

After surgery, James was sore. He didn't want to do anything but sleep. We had to keep him dosed on his pain meds or he would wake up in pain. We also had to watch his oxygen because his monitor kept coming off and his oxygen went low a few times. The first few hours, I did not know if I could make it through. I am dreading the next surgery in a few months.

I was grateful for Nana's help relieving me for a few hours to not stress over his monitors and to be able to get up and move. I had not slept much the night before, so a short nap was SO helpful.

He ate well when he was hungry. He didn't eat much (as was expected) but he ate, and I didn't have to squeeze out the milk too much.
Here he is in his "no-no s". He had to wear these for three weeks, unless someone was around to keep his hands out of his mouth. Dani tried to help with this and even threatened to put them on him herself even though I was right there watching him.The morning after the surgery, he was much more alert and you can see the dermabond on his lip.
When the nurse came in he was happy and cooing again. She mentioned that she had never heard a baby talk that much. Such a strong little one!

Princess Tea Party

When getting ready for this tea party Dani threw a huge tantrum because I was making her wear jeans. She was so loud, she set off the doorbell in the back of the house multiple times. When she realized she was wearing a matching shirt to her cousins, she started to get over the frustration of having to wear jeans. It really helped that Aunt Carey took them to play in the leaves outside.


Each of the girls had a wand and glass slipper at their place setting.

Bippity Boppity Boo!

Each girl had her own tea pot filled with pink lemonade. They turned the lid over to let the servers know it needed to be refilled.

They had a yummy looking lunch with a butterfly cut sandwich with a flower on top.

The table also included a couple princess games, tic tac toe and bingo.

Ice Cream was served in a tea cup for dessert.
At first Dani tried using a spoonBut she would only lick the ice cream off, and refused to put the whole spoon in her mouth.Eventually she got tired of using a spoon and decided to go directly for the scoop with her tongue.After dessert, the girls made princess bracelets.
Though the beads kept rolling off the table, the girls eventually completed their pretty bracelets to wear home.

We had lots of fun at the tea party

Smiling after our fun Girls day out
Dani had so much fun being with her cousins that she asked if she could wear her shirt that matched the cousins the next day, even if it meant she had to wear jeans.

3 Months

We were out of town for James' 3 month birthday and I didn't feel like bringing the large monkey with me just to take one picture. So here is a picture on his birthday without the large monkey.

And here is a picture when we returned to show how much he has grown.

Dani still loves to have her picture taken with her brother.
James is still developing well. This month he has developed mostly social and verbal skills. He was very cuddly and interactive when visiting Nana and Papa. I loved showing off his smile which came so easily. He also laughs a lot more and his ticklish spot is becoming more sensitive. He uses a variety of vowel sounds, initiates conversations, and takes turns talking.

He is extremely expressive when talking. If he is hungry, he will often talk to me with a sad face and a sad tone. At times his bottom lip comes out, but he's not crying he's just telling me his sad story. Other times he will smile and talk mixing up some of his "statements" with chuckles. Sometimes he seems quite serious as he tries to say different sounds.

James has started grabbing more often. He likes to grab my hair already and reaches for toys quite regularly. When I feed him he likes to rub my hands or try and hold the bottle himself. He can sit with support, but does not like being in the bumbo for more than a few seconds. He also doesn't like to be on the floor, but prefers being in his bouncer since this allows for better interaction. This month I've not been as good at putting him on his tummy on the floor. I will need to give him more floor time to work out his arms when they are not in restraints.

This month his sleep has not been as good as it was earlier. He prefers being held and with people. He has been spoiled and I've slept with him on the couch for many nights. If he wakes up and doesn't see me, he will yell (not cry or scream, just yell "aaa!" loudly). I was a lot more disciplined with Dani's sleep than I am with James'. With his surgery coming up soon, it's hard to be motivated to work on getting him to sleep alone. Perhaps in a few months I'll try more.

Since we visited doctors weekly this month, here is my monthly medical update. This month has been a lot more relaxing than the last since we have seemed to get good news from the doctors. Though the Neuro, ENT and Plastic Surgeons don't agree on when to fix his meningocele, at least three of the four Surgeons he has seen feel STRONGLY (and I felt this way all along) that he does not need a cranial bi-partition to move his eyes closer together. One less risky surgery!!! They have ordered more imaging studies to come to a consensus on what to do with the meningocele. We hope to do these at the same time as his first surgery which is less than 2 weeks away. After seeing Genetics there are no obvious genetic links, though they did suggest some tests to rule out a few things. They were pretty impressed at his communication skills since he was obviously trying to talk to them while they were assessing him. James will be having his first surgery in less than 2 weeks. He will have his lip repaired, his ears will get tubes, he will have another hearing test to see if he has any hearing in his right ear after the tubes and he will have another MRI and a CT scan. It will be a full day. I hope everything goes smoothly and quickly. Any prayers given on his behalf are appreciated.

I caught it!

This afternoon I recorded James' talking. He is getting much better at the tit for tat conversations and even squeals a few times. Here is a short clip with a small laugh that I caught on tape. It's only the third time he has laughed while awake and is kind of quick, but I'm sure they will become more frequent and obvious as he gets older. He really liked talking to the camera, so I'll have to do this more.

Halloween 2010

A Pirate Says "Argh!"