Saturday, May 20, 2006


Well Maxwell just finished one of his coughing/choking/needing suctioning spells and appears to be on the way back to la la land, so I thought I would use this time to post a quick update. (There is no point in laying down until I know for sure Max is ok and truly going to stay asleep for at least a little bit of time.)

Today was one of the roughest days I have had since Maxwell has been home. I'm exhausted, completely exhausted. Last night was another night of nearly no sleep and I just about lost in the middle of the night. Actually I think it would fall into the "losing it" category. I simply cannot go on like this any more.

First thing in the morning I put calls out to my insurance company to plead our case as well as more calls out to the various agencies that are working on a waiver for us. But unfortunately we are not sure if any of it will work...but there definitely is a renewed full court press. I couldn't help but cry on nearly every phone call explaining how tired and frustrated I was. I thought I had truly toughened up, but when you are working on no sleep...the emotions take a life of their own!

Yesterday afternoon I had to take Max to his doctor's for a weigh in (good news on that front - after being pumped and pumped with extra calories, he finally put on a few ounces) and the nurse could tell right away something was wrong. I didn't give any effort to smile and nearly fell asleep when we were waiting in her room. She and the doctor quickly put their heads together and called the public health department to stress the need for some home health care. They are really trying to push that as the sole caregiver, I cannot be expected to provide 24 hour care for such a medically fragile baby...especially when he is sick and requiring even more care than usual.

They were so incredible with me. I lost it with Max's doctor...I just started crying and crying about being worried about Max and his breathing issues, does he need a trach, will he ever get better, will he ever be able to breathe normally, why isn't he growing, why, why, why???? Then of course when he asked how I was doing...I cried and cried again.

One of his suggestions was to perhaps put Maxwell in the hospital for a night to give me a break...and that made me cry even more. I would feel like such a failure. He stressed over and over again to me that a kiddo like Max could be in the hospital nearly every day of his life and it was me and the full time care that was able to keep him out. And what happens to Max if I end up really sick or simply unable to go on at this pace? He said he was surprised I hadn't broken down earlier than this. He gave me a wonderful pep talk...he's amazingly supportive of both of us. But I still walked out of there feeling so down about our situation. Something must change.

So I'm not sure what to do. I didn't take the hospital option yet...I wanted to try another night at home first. And fortunately tomorrow night I was able to hire a friend of a friend who is a licensed nurse to come watch Maxwell. (I'll just add that to my growing list of medical expenses and hopefully the judge sees to it that the other party pays his share.)

Additionally, Max's doctor prescribed two additional medications to help move along this congestion. He reminded me again how severe his chronic lung disease is and that this is what is going to happen pretty much every time he gets really congested. Max simply doesn't have the physical strength or airway structure to move things along quickly.

I'm about finished with this post and it also sounds like Max *might* be staying asleep (as soon as I wrote that...he started coughing) I must run. Hopefully these meds kick in and provide some relief for Maxwell, and hopefully we come up with a good solution for in home care that provides some relief for me.

Thursday, May 18, 2006


Sarah (mom to Evan), a dear friend in CHARGEland, created a wonderful musical and video tribute to sweet Maxwell. It is so beautiful and touching! Thank you Sarah! :)

See MIGHTY MAX online.

*Evan and Max both started their lives two months early and were born at Swedish and then transferred to Children's. I have a feeling our special lil' kiddos (well Evan is not too little...he's getting huge and we are quite envious!!! Way to go Evan!!!) will be friends for a long time as our families learn about CHARGE and explore the world of special needs. We have been truly blessed to meet so many incredible and loving families in this journey.

Wednesday, May 17, 2006


Yesterday we had a review with all of our therapists involved with Maxwell's care....what a team! It has been nearly six months since we began the therapy and we wanted to review his progress and plan the upcoming goals. Unfortunately he still has not reached some of our initial goals, but everyone agrees that he is definitely making good progress. That lengthy hospital stay and his reoccuring illnesses, in addition to his CHARGE issues, have certainly set him back quite far...but all we keep saying is that practice makes perfect. Max will do what Max will do. As my favorite nurse once said, "With the right therapy and lots of mommy love, Max will reach HIS potential and that is all we can ask for...he will do the best that HE can do."

The official reports will be ready next week and my FRC (Family Resources Coordinator) reminded me to be prepared and that it will not be easy to read. Fortunately I am much stronger than I was six months ago and hearing the extent of Max's delays don't hurt as much as they once did.

I remember in the hospital when I was looking at his daily nurses report (each nurse gives a report to the next nurse on their patient) and read "DD" (developmentally delayed) and "deaf." I lost it, totally lost it. I cried and cried...I hated him being labeled. I will always, always remember how much that stung. But today I am a different person and I am well aware of his setbacks/delays (but I am also very aware how absolutely amazing, adorable, courageous and hard working he is!!!) and so HOPEFULLY I won't completely lose it when I read the therapy reports.


Max is FINALLY starting to accept his Bumbo seat and he is definitely making some real progress! The Bumbo seat is a wonderful therapy tool that provides extensive support for his entire torso so that he can work on sitting. I bought it for him back in December and he would be agreeable for about 20 seconds and then he would be absolutely exhausted.

Every day we have been trying and trying...and finally in recent weeks, I noticed he was doing better and better. Then this week he actually seemed to enjoy looking around and seeing the world from a different perspective. He "sat" in it yesterday for nearly TEN minutes...outstanding. He tried to give up a few times but with a lot of cheerleading and smiling, we kept him going!!! :) Of course his head flops around still quite a bit, but he is definitely much more steady than before. I am sooooooooooo excited!!! :) I will be bringing this seat back with me to WV so show off his progress to everyone!!! YAY!!! I know we have a very long way to go until he can actually sit on his own, but one step at a time!!! :) GO MAX GO!!!

*Oh and notice his Harley tshirt? It was a gift from a dear friend, Ruthie in WV. She said he could wear it if anyone ever questioned how tough he is!!! So the other day I was so excited to bring it out. The local "Ladies of Harley" group wants to help money for The Mighty Maxwell Guild so they came over to discuss the ideas with me and meet lil' Max in person. Well how perfect of an audience for him to sport this fun shirt!!! Thanks Ruthie and thanks Ladies of excited to work with you and raise some much needed funds for Children's Hospital!


For those of you who know me really well, I can get quite passionate about my latest "hobby"...whatever it may be! Gardening, scrapbooking, whatever...if I get excited about it, you cannot tear me away from it for days and days! But with a special needs kiddo, it is difficult to have this "passionate" behavior, because there is only so much time in a day! And he definitely takes up nearly all my time...but fortunately the last few days we have timed his naps appropriately and we have been up VERY early and I have managed to squeeze in a hour here, an hour there.

Gardening is a wonderful way for me to release stress...all that weed pulling and digging and working up a good sweat is a perfect way to forget your worries! Before I had Maxwell, we had two miscarriages and you could not rip me away from the garden...I was covered in dirt for weeks after each one. Luckily it is very inexpensive and productive therapy!!! :) I highly recommend it!

So this past week I started looking around my yard and thinking that I need to do something. My two dogs LOVE to dig and with all the commotion this past year, I have pretty much allowed them to get away with it. But now it is time for the repair work to begin!

My plan is to fill in spaces around the house with rock gardens and yesterday I had the rocks delivered. I had no idea of the magnitude of this project!! It will definitely take me a very, very long time to transport these rocks to the back yard! But what a great workout! The outcome won't be anything too exciting but at least it will help prevent the dogs' constant dirty paws and my yard won't look like a bomb went off!!!

The past few days I have been up at 5 a.m. because Max is awake so I have actually managed to squeeze in several morning hours to this project. I know it sounds crazy to be gardening at 5 a.m. but when you are exhausted, you just gotta keep moving or you will I have chosen to keep busy, busy, busy. But yes, I know once of these days this lack of sleep is going to catch up with me! I'm worried once it does that I won't wake up for weeks!!! :)

I was paying someone to do a lot of my yard work before and I probably will have to resort to that again because there is only so much time in a day...but right now, I needed some stress relief and I also needed to try and save some cash! :)

Fortunately, I have three lil' helpers in this project...Barney, Shakespeare and Maxwell. Actually Barney and Shakespeare just like to sit in any of the holes they dig or they find the new ones I am using for plants and have fun in them. And Maxwell typically uses this time to play in his chair or take a little nap. If he is not snoozing, I feel that we should be doing therapy so I tend to only work when he is indeed catching ZZZ's.

Today we have several appointments for Max and he is a little cranky anyway for some reason. But maybe this evening I will get a chance to move at least some of the rocks and make some progress on the gardens! If only Max were able to help, this project would be done a lot sooner! One more reason to work hard on his therapy...need to get him big and strong so he can help his mommy around the house!!! :)

Monday, May 15, 2006


Sorry for the confusion, there will be TWO parties celebrating Maxwell's upcoming on the east coast and one on the west coast. The Wheeling, WV celebration is tentatively planned for Sunday, June 4th from 2 - 4 p.m. And the Bellingham, WA celebration is scheduled for Saturday, June 24th.


As you know, I have been stressing out these past few months in preparation of when I leave to WV for the divorce hearing. I was so concerned about what to do with sweet lil' Max. I didn't want to leave him but didn't think it was possible for him to come with me. I looked into full time nursing but the cost was over $1000 a day! And I would need to be gone for at least four days. Plus no one "knows" him like I do, so I was nervous something would be missed. And every minute away I would be freaking out and missing him like crazy.

Sooooooo after MUCH deliberation, I have decided to have Max come with me! YIKES! I am very, very excited but incredibly nervous at the same time. It took weeks and weeks (literally) to arrange this. From getting special permission from the various specialists involved to preparing for all the equipment and oxygen needs on the flight...WOW! Lots and lots to arrange. Traveling with an infant on oxygen is extremely complicated and expensive! Some airlines could not even have him because of the type of equipment they use.

Even with the airline we did choose, I will have to hold a mask up to him the entire trip because their meter flow is so high and he doesn't require that much oxygen. Hmmm...this should be a very interesting trip. And the airlines don't provide oxygen at the airport or during your layovers, so I still have additional planning there.

It cost $400 for the oxygen and I also had to purchase an extra seat for him. Any one on oxygen has to have their own seat.

So lots of money and lots of planning, but at least my lil' man will be with me! Can you imagine how OCD I will be on the plane? If someone even sneezes within ten feet, I will be hosing them down with Purell!

Eliz and Thomas might be joining us on the plane trip too, so that could be fun! And then Jim and Jackson will meet us a few days later in Wheeling.

*** And since Maxwell is returning with me, we decided it was a perfect opportunity to celebrate his upcoming birthday (and possibly a baptism)! What an event/s to celebrate!!!! :) I will be posting details soon (most likely it will be the afternoon of Sunday, June 4th) and we also will be sending invites out to family and friends, but if I miss you, please just email me ( and let me know! I definitely want to thank his fan club in person for all the love and support and I know you would love to meet Mighty Max! :)

Sunday, May 14, 2006


My brother in law surprised me with a VERY special Mother's Day gift today! Eliz and I are being treated for a night at a luxurious hotel suite with all the trimmings...champagne, chocolate, and massage. Soooooooooooooo excited! :) Thank you, thank you, thank you Jim! This is very, very much needed and appreciated! :) YAY!!! Hopefully we can make arrangements with a nurse and make it happen soon!!! :)

And thank you again Eliz for the special delivery this morning and for all the wonderful cards and emails that I received from friends and family this week "from Max"! Very sweet of you!


Apparently Maxwell did not get the memo that today was Mother's Day and getting a good night's sleep is the best way for mommies to celebrate! :)

Unfortunately Max was not feeling well and we were up most of the night. He was trying to cough up his secretions and was having a difficult time clearing his airway, and then he would get very upset. So the night was filled with a lot of suctioning and a lot of comforting...and definitely a lot of begging. "Please Maxwell please...let's go to sleep. Just an hour, just an hour Max." It's amazing how good an hour of sleep can sound when you're tired, isn't it???

So I started our special day quite exhausted...however, I quickly got a ring at the doorbell with a Starbucks and breakfast delivery by my sister Elizabeth!!! She knows how much I love my Starbucks!!! What a sweet way to start the day. Thanks Eliz!!! :)

We all went to church together, and Maxwell actually was "talking" enough that we had to leave the service! It was so funny but I definitely didn't want to discourage his "verbal development" so we just headed out. Then we went to a friend's for a Mother's Day brunch to celebrate and enjoy some yummy food. It was fun but difficult at the same time. Seeing all of these healthy children running around and laughing...all healthy and strong. It can be bittersweet to be around other children. I am so happy for them, but I just want the same for Maxwell and I have no idea what the future holds for him.

It was a wonderful day but I have to say it was A LOT more emotional than I expected it to be. Being a single mom with a special needs child was certainly was not what I envisioned motherhood to be. This new life, this new path that God has presented to me, has challenged me and rewarded me more than anything in my life.

And on a day like today I find myself reflecting...what will next Mother's Day be like? Will Max actually be able to play with the other kiddos? Will he be sitting? Will he be able to crawl? Where will he be developmentally? And most importantly, will he be happy and healthy?

So many unknowns await us, but one thing I know for certain...I was hand chosen to be Mighty Max's mommy and for that I am incredibly grateful. :) I feel so truly blessed on this Mother's Day to have him in my life and will do every thing possible to give him the very best life has to offer! And whenever I get down, hopefully Max will learn that a quick "happy dance" does the trick and I'll be good to go again!!! :)