Isn't My Cousin Awesome!

My cousin, Brittany, makes adorable hats for kids. She is such a sweetheart! She made one for James and sent it off to us. I still need to take pictures in better lighting, but here are some of my favorites from tonight.

I love the big eyes!

He enjoyed this photo shoot as much as I did.

Loves to chew on his hands!

What's up?

James is scheduled to have neurosurgery in March and this hat will be helpful to hide the massive scar he's going to have right after surgery. It is also helpful in creating an extra barrier to his new hearing aid. Luckily he hasn't tried to pull his hearing aid off yet, but someday soon he might.

At the table

James is now sitting, though I have yet to get a good picture of him doing it. He sits upright on my lap without any extra support and sits on the floor for a few seconds before he has to lean on one of his hands. We now invite him to join us at the dinner table. He doesn't seem ready for solids yet, but he sure loves playing at the table with his big sister. He drops the Tupperware bowl and she picks it up for him...

Now that I think about it, that might not be the best game for him to play when there is actual food.

Dressing

This morning we rushed to get ready to take Dad to work and so Dani had more say in what she was going to wear.

She "had" to wear the tiger shirt from uncle Jeff and she really wanted her skirt. So I added the leggings and sweater to keep her warm. She then picked out her red sparkle shoes. Colors don't really match, but Oh well.

As I put her sweater on her and buttoned it up she complained that she wanted it "like Belle's" with only one button. I don't remember this from the movie, but I complied.

As she passed by her Dad he patted her head and she quickly ran away from him. "I don't want him to mess up my hair". I guess she likes having bed head.

Here is the final outcome....

Just imagine a bright red drink mustache and you have my daughter this morning.

Chilling with Dad

Doctor Appointments

The last couple weeks have been pretty busy with doctor appointments. ENT follow up clinic, another MRI and a CT scan, craniofacial clinic, audiology clinic and plastic surgery follow up clinic, have kept me busy. I've been blessed to have good Visiting Teachers from my church who watch Dani on the LONG 3 hr plus appointments.

Our last Audiology appointment we arrived early and James woke up and was very excited to meet the ladies at the front desk. He made three new friends. He was smiling, cooing and doing everything he could to get their attention and they just adored it.

He really enjoyed the two pretty audiologists who did his hearing test. I was thrilled he showed off his communication skills by talking and responding. When he heard speech and thought one of the audiologists was talking to him, he responded right away. He even responded to quieter sounds than he has for his previous tests. He completely ignored the frequency specific sounds, but when he heard a voice through the speaker he looked to see who was talking to him.

When we walked out, one of the ladies at the desk stopped me to give her "little friend" a gift. This is SUCH a cute little bear! The receptionists thought it was funny that it was practically the same size as James. James loves it too.

Dani 34 Months

Dani is SO much fun these days. She always surprises me with how creative she is in her play. She entertains herself with the most random of objects and entertains me in the process too.

Last Sunday while waiting for church to start and me to finish my preparation for Primary, she took a piece of paper and rolled it like a scroll and pretended it was a "telescope" and she "searched for treasure" and eventually found it, it was a bunch of cookies which she then pretended to eat.

She drags James' toys into her room and plays with them there. She made his play mat into a tent by putting blankets over the top. She loves his wubbunub and makes sure he has it whenever we leave saying, "Awww here's your wubbunub".

Yesterday her toy truck was "stuck in a ditch" (James' bouncer) and she had to "pull it out with a rope" (the vacuum cord).

She was very proud of her gingerbread house she made with grandma a couple weeks ago and after looking at it for a few minutes said "My gingerbread house is almost as big as our condo". Trent and I broke out laughing because it was hard to hold back. This was the first time Dani was a little shy at our laughing so we had to try and help her feel better.

She believes all songs tell stories. She will often ask us what a song is about while we're listening to it in the car. Her made up songs are just a string of phrases that make up a story. Here are some of the phrases I was able to make out in her song I recorded about baby Jesus.

"The baby Jesus", "The Angels give him ___", "Because Mary and Joseph and Baby Jesus lived happily ever after. That morning they woke up and they lay in his bed. They couldn't sleep", "they found the truth", "and after that as a child singing all around, all around, all around, all around, all around, all around" (repeats for a while). "She got up in the music" "That could be the problem." After that they went home and took a shower. They had gone so long."

She is now reading Disney "Step Into Reading" books that my parents got her. I'm amazed that she is able to read Step 1 books all by herself and Step 2 books with a little help until she learns the book. She has an easier time reading the books that have a plot line to follow than just describing the page, such as Cars "The Spooky Sound". She LOVES to read and even reads to her baby brother.

Dani is very good with her baby brother. She loves to teach him, play with him and read to him. The other day she was so excited to teach James signs. She grabbed his toys one by one and asked me to show her the signs so she could teach them to him. We worked on "ball", "book", "bird" and "elephant".

It's so fun to see her grow. She is such a sweet and fun little girl!

James' Blessing

While we were in Texas, we had the opportunity to bless James.

Here are some of my favorite pictures from that day.

Trent did not have any Sundays off before James' surgery, so we blessed him on the Saturday after Thanksgiving, right after his oldest cousin's baptism.

Oldest granddaughter on Trent's side of the family and the oldest grandson on their special day.


My two little ones.
My two favorite boys.


James with Nana and Papa. So glad we could have him blessed with family around. All Trent's brothers were there as well as his Cousin.

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!