EXTREMELY ROUGH DAY...NO SLEEP, MORE MEDS, POSSIBLE HOSPITAL STAY

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)...so 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.

VIDEO OF MAXWELL'S LIFE

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.

THERAPY REVIEW

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.

GREAT "BUMBO SEAT" PROGRESS

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 Harley...so excited to work with you and raise some much needed funds for Children's Hospital!

THE YARD REPAIR PROJECT...YIKES!

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 collapse...so 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!!! :)