Friday, May 12, 2006


Cedie is a sweet lil' girl with CHARGE, who was born just one week prior to Maxwell. She has spent her entire life (minus one week) in the hospital...yet she continues to smile for her mommy and give love to everyone around her. These CHARGE kiddos have quite the spirit about them!

Today Cedie is undergoing an open lung biopsy. Her mom is asking for prayers for her baby, the surgeons, nurses, and family. Thank you everyone! I know your prayers worked amazing wonders for Maxwell...let's do the same for Cedie! :)

* After following Mighty Max's blog, Cedie's mommy decided to do one for her baby too. YAY! You can read all about Cedie at

Thursday, May 11, 2006


After Max's bath and evening "care," we usually cuddle for a little while and then I put him in his crib and he plays with his toys and soon dozes off. Sometimes he needs a little more loving, but he definitely loves his play time too!

But tonight he took that to the extreme and was playing with absolutely anything in his crib to procrastinate going to sleep. It was super cute! He even managed to scoot out of his wedge (necessary for feeding purposes) and totally turned himself around! Every time I came in to check on him, he started giving raspberries...sooo funny! :) And then of course, as soon as I brought out the camera, he brought out the smiles!

This is my new all time favorite photo!!! How amazingly delicious can one baby be???


Typically we do the inhaler several times a day to help Maxwell's lungs. However, with the virus we have increased that to every four hours and added in an additional medication. Fortunately, Max likes to help me with the treatments! He is so funny about it! :) In the hospital, he despised it and would twist and turn in attempts to get away. But in recent months, he decided it was quite fun, and sometimes he tries to hold it himself or other times he wants to suck on it like his toys! :) It might take a lot longer to get the treatments completed, but at least he enjoys it!

Mommy, don't worry...I got it. How many breaths again?

All done!

Here you can take it now Mommy...I feel much better.

Wednesday, May 10, 2006


To put it simply, it was a very long night...short on sleep, long on "interventions" with Maxwell. He required significantly more oxygen through the night and finally at one time, I had to wake him up because he was on such a high amount yet his sats were too low. Multiple suctioning attempts later, he was able to go back to sleep and kept his sats high again on the increased O2 level.

He seems to be feeling a tad better this morning...I just got my first "happy dance" and smile. Had not seen that for past 20 hours or so. That is always ressuring. His happy dance is the cutest thing ever!

And after a difficult night, it was wonderful to wake up this morning to so many supportive, loving emails. Thank you for trying to understand. Even if you don't know what it is like to have a special needs kiddo or the dealings of a divorce, I appreciate your empathy. And I appreciate everyone just letting me vent from time to time!


How adorable is this little bundle of sweetness? He would not let go of me after the bath...and when he finally did, he stayed in a little ball. So sweet and irrestible! :)

My lil' sweetheart finally went to sleep and looks much more peaceful and comfortable than today. Hoping this continues through the night. The gorgeous blanket was a gift from our very talented Aunt Sue. :)

Tuesday, May 09, 2006


Max is sick...again. We are having the most difficult time keeping the bugs away. This has been going on for weeks and we are both exhausted physically and emotionally.

I think part of the reason is that without nursing help, I am forced to take him out more...I have no other choice. Since he is no longer in his "bubble," he is being exposed more to germs. And once he gets sick once, his immunity is a bit compromised and he's more susceptible to yet another virus.

The latest is that two days ago Maxwell started getting congested and it appeared it might just be a little cold. Well unfortunately not much proves to be "little" in CHARGEland. That cold soon turned for the worse, and the past few days and nights have been spent either comforting him because he is coughing so hard or suctioning his nose...which he absolutely despises but it is very, very necessary.

Today he spiked a fever and his O2 needs increased significantly so the doctor wanted us to come in. We did MORE xrays of his lungs and he examined him from top to bottom. Right now the lungs are showing slight worsening...and the fever increased during this afternoon too. So we are going to see how he does overnight. Poor lil' guy. I lost it several times at the doctor's. It absolutely tears me apart how much he must endure everyday. We put him in this device for the xray and he could barely tolerate it because of his low muscle tone...and he was crying miserably. Then when we were waiting for the doctor to review the xrays, I was holding him and looking at the bulletin board of healthy children...and I just started to cry and cry. Sometimes I am reminded of just how many challenges Maxwell has and it saddens me terribly. I try to be tough and brave and act like all is well. And quite honestly, I am soooo incredibly proud of Maxwell and his many accomplishments that I don't think a lot of what he "can't" do (yet that is). But when his delays and challenges hit me, they hit me hard. Today was one of those days.

I do my very best to give him everything. I think he is a happy baby who knows that he is absolutely adored and cherished...and to me that is what is most important. But oh how I wish for him the ability to hold his head up and the strength to sit independently...what fun awaits him when he reaches those amazing milestones. Until then I will enjoy lots of floor time with him...he absolutely loves when I give him raspberries all over his belly or tickle his sides. And no strength on his part is required! :)

Hopefully we both feel a little better in the morning. I gave him a long bath this evening...that along with some Tylenol seemed to provide some comfort. And actually since he was so mellow, I gave him his first haircut. He was getting pretty shaggy around the he is a super cute, clean cut lil' boy. He is absolutely gorgeous as always, even when he feels crummy.

On top of Max's medical concerns, guess what else we are dealing with??? Hmmm...let me think. What am I dealing with that is so ridiculous, a waste of time and should have been over months and months ago? Oh yes, my divorce. Because Max's father is refusing to pay for a true fair share of Max's expenses and wants to rely on the government, I have been busy in meetings after meetings with all the various disability organizations and resource programs. I have met with basically all of them before, but I just wanted to review everything again. I have basically exhausted all efforts to find programs suitable for Maxwell and our income level. Basically when I told them the father's ideas, they laughed and said if he believes there are such wonderful income programs for disabled children, perhaps he should let them know. They would love to know about them and tell other families!

When you have always cherished your career and enjoyed a really good income, it is soooo incredibly difficult financially and emotionally to have these "meetings." All of a sudden, you are forced into a life of where you are constantly seeking help. I don't want to receive help, I want to give help. And dealing with all the government agencies requires a lot of assertiveness, patience and organization. Such a maze! Fortunately, I feel quite comfortable about being very persistent with getting what we need! My work on Capitol Hill and in campaigns has served me well. :)

Anyway, so I am already feeling "strange" about having to ask for help but then the person always asks about the father's role and that of course he would be responsible for these medical expenses too. I have to then explain that he will only pay what the court orders him to, and if the judge doesn't agree with our side, then how will I afford all of these extraordinary expenses. I can't help but feel like it makes me look bad that I was married to someone who is behaving this way. Not sure if that makes sense, but basically I feel that my judgement is questioned...and I want to say "no, no, trust me, this guy can pull the wool over anyone...he is really, really good at being deceitful." But I just let it go and say I made a mistake...lesson learned.

But fortunately, soon enough this will all be over. What a relief. And whether or not the judge sees clearly the position that Max and I are in, at least this will be over one way or another. My lawyer says we can appeal, but I'm not sure I will up to that. We'll see.

Enough for now...I need to get some meds ready for Max and then do more paperwork. And if I can stay awake, I might even try to fit in some scrapbooking so I can end my day with fun. I absolutely love putting together Max's photos and journaling about our life together. :)