Friday, November 17, 2006


We left Seattle early this morning (5:30 am) so we were back in Bellingham bright and early. Ok Mom wasn't too "bright", she didn't manage much sleep during my sleep study. (I guess you could say that was my fault, I woke up crying several times...those wires were a little overwhelming and scary.)

The study was very impressive. They study literally EVERYTHING going on...from CO2 and O2 levels to brain patterns and heart rates. Mom is really looking forward to the official report.

The RT said that typically a report isn't ready for a month (several people are involved in the review and orders), but in cases where something might be wrong, you find out sooner. She then said we were in the latter category. Hmm...

We are not overly worried, but sure would like to know what we will do to address my sleep apnea, need for oxygen, etc. Mom will keep you posted.

Lady, what are you doing to me?

Mommy, this really isn't all that fun.

Don't make fun of my wire ponytail.

With lots of Mommy cuddling (and some Grey's Anatomy viewing!), I finally managed to fall asleep...wires and all.

The morning after...

Thursday, November 16, 2006


I have a few quick stories to share that are quite funny...enjoy! :)

Social Butterfly
Max and I went to Lowe's yesterday and had such a great time. He LOVES lights so he stared at the ceiling for the most part. :) We also played peek a boo in the's amazing the therapy and games you can do even when shopping!

When we were in the checkout line, a woman waved to Maxwell and HE WAVED RIGHT BACK!!! Sooooo cool! I of course squealed with delight, which caused some attention and then everyone started waving at our own lil' social butterfly. It was wonderful!

"Please stop giggling Maxwell, your stomach contents are spilling out..."
Yep, that is just not something I ever thought I would be saying to my son! He loves, loves, loves to play with his Gtube and I always have to keep a close eye on it. Even when he is dressed, he loves to twirl it and pull on it. Between that and his hearing aide, he sure keeps me busy keeping all of his "attachments" in the right place! :)

So the other day his tube was getting kind of loose and he managed to pull it out once. I fixed it (temporarily) and then after his bath, I am changing him and he pulls it out again. Well he and I have a tickling game during diaper changes and after his bath, and he thought that is what I was doing when I tried to put the tube back in. He just kept giggling and giggling and I could not get it back in. It was a little frustrating but VERY funny at the same time! Would have been great to have on video...the life of a Gtube kiddo! :) I love how happy he is...that is what is most important to me. He definitely is one happy...and tricky...lil' boy!

"Nope, that's my son's EKG"
So I was referred to a pulmonogist earlier this week who wants me to have a series of heart and lung tests. In addition to my breathing, they are noticing some odd beat patterns and slow rhythm with my heart. (I am not too worried, I know it is the stress causing these problems but I guess it's better to be safe than sorry.)

She was reviewing my EKG and said she was concerned with my bradycardia. Of course, I immediately assumed she was looking at the wrong chart (even though this is a completely different hospital and doctor!) and said, "Oh no, I'm sorry...that's my son's EKG you are looking at. He is the one with the bradycardia issues." She looked at me like I was crazy (she isn't aware of Maxwell's medical status) and said no, your name is right here on the EKG. And for those of you who know my fiesty spirit, I of course continued to disagree with her and declare that was Max's EKG and they probably just have my name on it because I am his mother. It was quite the moment. :)

Like dog, like son, like mother...
My sweet dog Lucy had to wear halter monitors to check her heart status many times. Maxwell has endured countless monitor sessions...and now guess what? Mommy's turn! Yep, next week I have to do the silly ol' test to see what is going on with my heart and breathing. I couldn't help but chuckle when they ordered that test.

Better run...gotta start packing up all of Max's equipment for our trip to Seattle. I'm sure we will have many more funny stories after the next few days. :)


On Thursday, Maxwell and I head down to Seattle for a sleep study. We will be there from 7 pm until 7 am the following day. His pulmonogist wants him evaluated based on some apnea issues and his constant need for oxygen during sleep. I will sleep (or at least nap a little) in the room with him.

If there are any significant problems, I imagine they will try CPAP to study any improvement. Not looking forward to that, but if it will help...sure. Max just moves around in his sleep so much, I don't know how it would possibly stay on. I guess we'll see!


It seems like all of my friends are having babies these days...very exciting times for everyone!

Today two of my very favorite people, Steph and Drew, welcomed their little girl into the world...sooooo wonderful! (Name is still to be determined)

In the next few days, David and Meredith (brother and sister in law) will be delivering a little girl as well! First granddaughter in the family! :)

And a sorority sister and longtime friend of mine, Brandy (and husband Wade) are expanding their family to arrive in the next month or so. (They didn't find out the sex.)

Last but not least, a belated congratulations to Rebecca and Randy and their beautiful new son, Carson!

Mighty Max and I are thrilled for all of you! :)

Wednesday, November 15, 2006


Two more CHARGErs are having surgeries this week and I ask you to keep them both in your prayers.

Evan is a tough lil' guy who is having his soft cleft palate fixed tomorrow. They are hoping this is his last surgery for awhile.

Meagan is a sweet two year old who had surgery today to receive her cochlear implant. Their family is very excited for her to experience some sound...especially so she can communicate with her twin sister (who is healthy/typical).

Also, Ben is having some difficulties with post surgery (cochear implant) and Maya is in the hospital with some respiratory issues.

And last but not least, Max is almost off his latest round of steroids and antibiotics and feeling much better. YAY! (Hopefully soon his steroid craziness will wear off, but I must say it is quite funny!) We went to the doctor again earlier this week and he felt much more comfortable with Maxwell's respiratory status. Avoided another hospital stay...woo hoo!

Soooo...prayers all around in the CHARGE commujnity. These kiddos certainly keep us on our toes!

Tuesday, November 14, 2006


Look at me swinging!

That's Jill, my physical therapist, behind me! We had such a great session! This swinging helps my vestibular system and also encourages torso strength. It took me months to accept touching the rope (sensory issues), but now I think nothing of it! :)

I can wave to Mom and swing at the same time!

Hello again Mommy! This waving thing is very cool!


November is "Prematurity Awareness Month," and I think it is an important time for us to note what we can do to help with this effort.

I know for me I learned about preterm labor the hard way...

My water broke at 28 weeks and I was immediately helicoptered down to Seattle. They were expecting me to give birth that night or at best within a few days. It was one of the most frightening times in my life...I had no idea what was happening or what to expect minute to minute.

With the assistance of very strong medications and strict hospital bed rest, Mighty Maxwell managed to stay "inside" until he was 32 weeks. The doctors were thrilled that we were able to sustain this period of time with no infections or serious issues for me or Max. He isn't a true "32 weeker" because the stress of low amniotic fluid didn't allow for complete development of his lungs and Max now suffers from chronic lung disease.

Unfortunately I did not recognize the signs of preterm labor. I had just moved to Bellingham from WV and attended my first two lamaze classes. I was experiencing backpain, cramping and spotting but just assumed that was part of pregnancy. However, Elizabeth thought something might be up so she took me to the hospital. I remember being in a room and looking over at a poster that listed the signs of preterm labor. We read them and I literally had each and every one. A few minutes later, my water ruptured...and the medical team rushed in. What a surreal moment that we will both never forget.

Who knows if I could have prevented Max's early arrival...perhaps by a few weeks (?) if I had known the warning signs. In his case, his arrival probably was because of his choanal atresia. Many babies with this birth defect arrive early because they cannot swallow the amniotic fluid. But in other cases with "typical" babies, knowing the warning signs of preterm labor may save a child's life.

We would appreciate your support of the March of Dimes on behalf of Max. But most importantly, please read below to understand the organization's work and goals.

(Below is from Evan's blog...thanks Sarah for the information.)

Today more than 1,300 babies in the U.S. will be born prematurely. These babies face an increased risk of death and serious medical complications; however, most, eventually, will go home. But what does the future hold for these babies? Many survivors grow up healthy; others aren’t so lucky. Even the best of care cannot always spare a premature baby from lasting disabilities such as cerebral palsy, mental retardation and learning problems, chronic lung disease, and vision and hearing problems. Half of all neurological disabilities in children are related to premature birth.

While doctors have made tremendous advances in caring for babies born too small and too soon, we need to find out how to prevent these tragedies from happening in the first place. Despite decades of research, scientists have not yet developed effective ways to help prevent premature delivery. In fact, the rate of premature birth increased almost 31 percent between 1981 and 2003 (9.4 to 12.3 percent).

March of Dimes launched the fight against prematurity officially at a press conference in Washington, D.C. on January 30, 2003. The all-out effort to reduce prematurity will be waged on a number of fronts.

Goal: Raising Awareness of Prematurity
The March of Dimes goal is to raise awareness of the problem of prematurity to 60 percent among women of childbearing age and 50 percent among the general public by 2010.

While the rate of premature births has been increasing, surveys show that most people have no idea either how widespread or how serious the problem is. Prematurity is a silent enemy...and can be a lethal one.

To inform the public about this serious problem, the March of Dimes has produced television, radio and print materials that will be distributed across the country.

Other material has been created to educate pregnant women about the signs of preterm labor and what to do if they have them.

Goal: Reducing the Rate of Premature Births
The March of Dimes goal is to reduce the rate of prematurity from 12.1 percent in 2002 to 7.6% in 2010, in accordance with the the U.S. Public Health Service Healthy People 2010 objective.

Prematurity has increased at an alarming rate over the past two decades. The March of Dimes is determined to stem the tide of premature deliveries with education and research.

Education helps ensure that pregnant women and their health care providers have the latest information about how to reduce the risk of a premature birth.

Funding research is critical to the fight against prematurity. If the causes of premature birth can be better understood, then new ways to prevent it can be developed. A significant portion of our research portfolio addresses prematurity. With help from people like you, we can fund more research. Help us gain more knowledge before we lose more babies.

So what can you do? If you are pregnant (or know someone who is), talk to your Dr. about your risk factors and the warning signs of preterm labor.

Also considering making a donation to the March of Dimes. You can visit their website for many different ways to donate:


Whew, we are soooooo fortunate to have received the medical waiver!

I am still getting bills upon bills for the time that he did not have the coupon...and they are stacking up. I have been working with the insurance companies, DSHS and medical offices to figure something out. Fortunately there was only about a two month window without the coupon.

Beyond his medical appointments and procedures (the most pricey of the bills), he has mega equipment rental, medications, and therapy. Yesterday I received a whopper for the OT/PT that wasn't covered...that in itself set me back a pretty penny! Yikes!

I know Maxwell has more medical/developmental issues than many special needs kiddos and therefore his needs and expenses are much higher than average. (I don't like admitting that, but hey reality is reality.) But still, I don't know how special needs families can afford all of these costs on top of the time away from work or not being able to work at all.

And this medical waiver that Maxwell received is extremely, EXTREMELY uncommon. Actually another parent recently told me that our two sons are the only children who have received the waiver in this county for the last ten years! Yikes! That was difficult to hear (knowing how above and beyond medically fragile our children are) but it was also a reminder how incredibly fortunate we were to actually receive it. I am forever thankful for all the case workers and medical professionals who worked with me to make this happen. Wow.

As we move forward with the newly elected state and federal legislators, I kindly (and strongly) urge you to advocate on behalf of the special needs community. I never realized how much financial strain (in addition to the physical and emotional strain) was on families until Maxwell arrived. These families and their services need our support.

For example, here in Whatcom County they have a "payor of last resort" fund for families when they need financial assistance. Therapy appointments, sign language classes, special shoes (Dylan for example last week could have used this), etc. are just a few examples of items that can be covered through that fund. Unfortunately that fund has run dry and will not be replenished until next year.

These sources of assistance could be better funded if we advocate their importance to our elected officials.

And lastly, yes I know that many of you are probably going to post "what about the father? why isn't he paying?" Unfortunately that isn't going to happen without the courts forcing him we are working on that. Yes indeed that is frustrating, I know! But I'm sure it will work out and I will be reimbursed eventually.

Ok now back to posting some super cute photos of Mighty, Mighty, Mighty Maxwell...

Monday, November 13, 2006


Here I am playing two of my new favorite games with our wonderful friend Momma Beyerlin! We adore each other...can you tell? :)


And "waving hello" is something else I am learning. Mommy is very excited about this one!

I haven't got the hang of it quite I wave hello at random times. But we think I will have this mastered in no time! So fun to communicate with others!


Max absolutely loves to play with stethoscopes...makes for a great chew toy!


Yep, this is Mighty Max's new favorite funny is he? (For those of you not familiar with yoga, this position is "downward dog." But he didn't need to take any classes, he learned it all on his own!)

He absolutely loves being on his hand and feet! He must do this at least 30 times a day! He even had a little rug burn on his forehead the other day! Yikes!

He is one funny and strong dude! GO MAX GO!