Halloween 2010

A Pirate Says "Argh!"

Story

Here is another favorite video of mine. I just love watching Dani play. Here she is creating her own story to "read" to Bolt. Notice how Bolt is carefully placed on a pillow. She LOVES her stuffed "sweet puppy".

It's already started; asking for presents I'm not able to get her yet. A couple weeks ago I asked Dani what she wanted for Christmas, she responded "A Puppy". Too bad she'll have to wait AT LEAST until we have a house and maybe even longer due to allergies and the work load of a puppy. She might not be too disappointed though, I'm not exactly sure if she meant a real puppy or was just referring to the toy puppy in a magazine. I'll have to ask again later.

Smiles

This is my favorite video right now. I can't help but smile.

As you can see, James LOVES kisses! I need to repeat this video with someone else holding the camera. Also of note, on Tuesday James laughed for the first time. Though he has been laughing in his sleep for months, this was his first laugh while awake. I'm anxious to get his laugh on video tape some day.

Creativity

Though I have had lots of posts about James and his development, I've also been enjoying watching Dani grow and develop her personality. She LOVES to play and is quite creative. Though she LOVES toys, she often takes every day items and pretend they are toys. Here is a small sample of what Dani has done over the last few months. Please know that these are her creations not prompted or demonstrated by me.

She has cared for her brother.

She has dressed up

sometimes in normal dress up clothes with new special shoes
Sometimes in favorite new dresses

Sometimes in her own "princess dresses"

My high heels are her "glass slippers"Some days she prefers not to get dressed at all. Though this is because her nightgown is like a "pretty dress"

She also loves to make pattern ("paduwin") necklacesIt is not uncommon for me to be cooking dinner only to have a super hero run into the room exclaiming "Don't worry Mom! I'll save you!"

She has made "carpet angels"

This was her "instructions" which she requested that we take everywhere (the store, restaurants etc). I just didn't feel like toting it around.

Since James came along, her "purse" has been a favorite toy to grab while I am occupied.

While at a restaurant the other day she picked up her knife and fork to show Dad how to play a violin. She stuck it under her chin like that without any instructions. I think she learned this from Elmo on Sesame Street.

Dani has been fighting naps for a while and since James came, I've not been feeling up to the fight. We've come to a compromise. She can stay on the couch and watch my shows with me if she tries to go to sleep and take a nap on the couch. The great thing is there is little set up and no complaining because she doesn't have to nap in her room. I just have to leave the TV on or she will wake up to tell me it turned off.

Over all she is a very sweet, helpful, and obedient little girl.

Two Months Old

2 months

Weight: 12 lb

Length: 23.5 inches

Other than the MRI, James has not had any doctor appointments this month. I've been grateful for a few weeks of no new problem to add to my list. Even if it is just ignorant bliss, it is still a nice break. I have also had a lot fewer tears and feel like I'm getting a little bit of a grasp on what we will face. I sure hope to keep it that way for a little while.

I thought that I would be less excited about my second child's developmental milestones. With our situation, however, it has turned out to be opposite of what I expected. I am obsessed with every little milestone he makes. Seeing him progress really lights up my day.

Here are a few things he has been doing this month:

• Swings his arms and legs to hit dangling toys.
  
  

• Vocalizes mood. Happy coos when I give him attention, and sad cues/pouts after he has been crying and is picked up.
  
  

• Grabs on to my pump tubing and once he even disconnected the tubing while I was pumping. Though not likely purposeful, it seemed like a very coordinated reach, grab and pull from the hand furthest away from the pump.

• Either holds onto my hand or "holds" his bottle while being fed.

• Visually tracks things and people well.

• Smiles spontaneously at me. Even if I'm sad these smiles are contagious!
  
  

• When I sing to his good ear, he will turn his head so he can see me.

• Unfortunately, he likes TV like his big sister. Though he at least prefers talking or playing to TV.
  
  

• Has started to REALLY fight sleep and gets quite grumpy when he needs sleep. Does not know how to fall asleep on his own yet.

• Does not like to be alone for more than a few seconds. He will calm down if I am in his view, but fuss loudly if he can't see me.

• Attempts to suck the fingers on his right hand when he doesn't have his pacifier.

• Holds his head up at 45 degrees when on his tummy.
  
  

• His head is quite steady when held in a sitting position.

• He is able to bear weight on his legs.

Dani also enjoys playing with James, even if he doesn't respond much yet. She loves to put baby toys in his hands and help him shake them. She likes to read with him, watch him on the couch, keep him company when I have to get something, sing to him, pat his hair, talk with him about how cute he is, and bounce him in his bouncer. She is the sweetest big sister I could imagine. She is so enthusiastic about everything and always upbeat and happy. I can't help but smile when I think of my sweet kids.

The Good, The Bad and the Ugly: MRI

After visiting the Cleft Palate Clinic in September I learned that James' cleft is quite rare. Though cleft lips and palates are one of the most common birth defects, they are usually not along the midline. Midline clefts happen around 1 in 100,000 or 1 in 200,000 depending on the source. At first this seemed like it might be nice. The cleft in his lip is small and the scar might be less noticeable. Most clefts have nothing else associated with them. However, midline clefts are associated with other midline defects (such as defects in the brain, heart and kidneys).

A few days after James turned 1 month old, he had an MRI to rule out other midline defects in his brain. When we first got the MRI results the Surgeon called us and read the radiologist report to us and mentioned that the defect was quite large 5 x 6 cm. After a week of trying to imagine this large of a defect in such a small head we reviewed the MRI and radiologist report ourselves. The report did mention a 5x6x5 cm defect. To us it seemed the radiologist likely meant mm not cm. Since then we talked to the surgeons and they seem to agree with our interpretation of the MRI.

Overall the MRI results are good news hidden amid bad news:

• The good news: His brain does not seem to be impacted so he has a chance of developing normally.
• The bad news: He has a meningocele
  (due to a defect in the bone below his brain {cribreform plate}, the coverings of his brain {meninges} have formed a sort of pocket filled with CSF fluid. This may or may not be connected to his nasal cavity and may increase his risk of meningitis. We have a meeting scheduled with a craniofacial team to discuss what their recommendations would be and if/when he might need neurosurgery and craniofacial surgery. There is also debate as to whether his eyes are farther apart than normal {hypertelorism} and if he will need a cranial bipartitian. This will also be discussed.)
• The ugly truth: There still may be more problems we don't know about yet.
  The news that he may develop normally in my opinion outweighs all the other factors here. If it is only the hassle of many surgeries that we have to face (he develops normally and has a normal life expectancy), this problem seems much smaller.

One Month Old

This past month I've been quite busy with the two little ones at home and all the doctor appointments we have had. James has already gone to 5 doctor appointments. One of his ears seems to be doing well other than a mild conductive loss (likely due to fluid in his middle ear). However, he is not responding at all to sound through his right ear or through bone conduction with the left ear masked, which means he likely has permanent hearing loss in his right ear. We will be retesting this after he receives tubes in December. I'm glad his left ear is good and hearing loss in one ear has only a mild impact in comparison with hearing loss in both, but its hard to keep finding more trials he will have to face. I've also been kept busy pumping and feeding him which takes a lot more time than just nursing. I'm exhausted by the end of the day, but it is at least something I can do to help him.

Aside from the ups and downs of the doctor appointments, it has been fun to watch James grow and develop over the last month.He still prefers to sleep with others but he is now sleeping up to 5 hours at night.He eats mostly in the day and sometimes up to 5 ounces.

• He lifts his head up and holds it up for at least 10 seconds.
• He likes to be on his belly so I sometimes put him on my leg with his feet on the ground. I have to watch him because he sometimes kicks so hard he almost flies over my leg to the other side.
• He coos by using the short /a/ sound and gives "kisses" when he is a little hungry, but then throws a fit when he is very hungry.
• For the most part, he only fusses when he is hungry
• He is easily soothed by being swaddled and rocked.
• He grabs and holds on to anything he can
• He generally keeps his hands open
• He sometimes holds his pacifier in with his hand since he can't create enough suction to hold it in with just his mouth.
• He responds to sounds
• He laughs and smiles in his sleep
• He smiles daily
• When he is awake he is usually quiet and alert
  
  

Despite all the difficulties, there is a lot to be grateful for. I take this as a learning experience that I hopefully can use to help others in the future. I am seriously considering completing my Masters degree in Speech Pathology and focusing my education on Cleft Palate kids. Though I will not be James' Speech Pathologist, I do feel I will learn a lot by going through the therapy with him. I will also be able to share my experience with those I work with.

Daniella has been fabulous! She is a big helper getting me things when I ask, bouncing James in his bouncer to calm him down, and checking on him for me when I briefly leave the room. I can tell she loves her baby brother. She still tells me how cute he is and is so gentle with him. She's so sweet!

Before I had James I did not have many people I considered friends in Denver. I rarely left Dani with anyone because I didn't feel like I had anyone I could leave her with without feeling like I was inconveniencing them in some way. However since James has come, there has been an outpouring of love from people and I have had many offers of help. There were many people who brought food over for me last week and many who have offered to take Dani for play dates. I know there are many people praying for James and it touches me that there has been so much love shown for my little one.

Thank you for all your comments and your support!