Thursday, January 26, 2006


Thank you everyone soooo much for the many supportive emails and phone calls today...wonderful to feel so loved and cared about during this difficult time. And thank you too for allowing me to vent about the divorce, etc. Some days when "my cup overfloweth," I just want to scream...but I never want Max to feel any stress or negativity. Only good vibes around my sweet lil' man! :) So it helps to know my family and friends are there to listen to me vent and then pick me back up...thank you!

Today is yet another "cup overfloweth" day unfortunately. One of my best friends back in Virginia, Kirstin, has a nephew, Ryan, who has been in the hospital since birth. (We already shared so much, it was so odd to share this ICU experience with her.) Ryan is just four months old and has been suffering from heart and blood clot issues. Tooday I learned he is not going to make it. His clots are worsening and now he has another infection. I literally screamed when I heard this news...enough is enough. We have seen too many babies die this year. I am trying to understand that our bodies some times just are not equipped to last, but it feels like death has been all around us. What a naive world I lived in before....I just assumed all babies were born healthy and happy. I was just nervous about knowing how to breastfeed or would my baby cry a lot, etc. What a reality check this year has been.

My heart goes out to Ryan's family...I can't believe I never had the opportunity to meet him. Please keep him and his wonderful, loving parents, Danielle and John (and aunt Kirstin) in your thoughts and prayers. What an incredible loss for all of us.

Additionally, Max is confusing me today. His heart rate has been much higher than usual during sleep and his O2 requirements are higher too. Hmmm...I have a call into the doctor's office and as soon as Max wakes up from his nap, I am driving him to the hospital for some lab tests. We'll see. I am hoping that I am just being paranoid, but I think something might be up.

Hopefully tomorrow will bring peace, health, and only good news!

Wednesday, January 25, 2006

ROLLER COASTER OF A DAY! (Personally not medically thankfully!)

Today started off really badly. My soon to be ex and I engaged in a series of emails about the upcoming hearings, financial support, etc. and while I shouldn't be surprised by his behavior, I still am. I still want to believe in the good of people!!!

Unfortunately though, this man shows no remorse for what he has done and has turned so truly heartless and cold about everything...the divorce, his betrayal, Maxwell...and I still find myself completely shocked and incredibly disappointed. I cannot believe I was so fooled before as to who he really is! Yikes!

The upcoming months certainly will be difficult. Our temporary hearing (for child support, etc.) is this Monday and the final is at the end of March. We are organizing our depositions in the coming weeks and while those "details" are not going to be easy to hear, it needs to be done. But yuck, yuck, yuck nevertheless.

One of our biggest disagreements is my need for good financial support. With all of Max's medical and developmental needs, there is absolutely no way I can return to work any time soon...possibly years. From what I have heard from other special needs families and fron my brief experience thus far, organizing Max's care (development, education, therapy, medical) will be a full time job...and then some! Therefore, we are arguing that the father should be responsible for this since he is not participating in his care. It's just unfortunate that we have to go to court over something so obvious.

ANYWAY, as I stated...the day started off badly, but WOW what an improvement as the day went on. :) Max and I had such a wonderful afternoon and's like he knew, "I better be super cute, my mom definitely needs lots and lots of snuggles and smiles!"

First off, we enjoyed a short little nap together. This has not been possible since I have been home. Usually when he is sleeping, I am running around the house sterilizing everything, doing his laundry, organizing, calling doctors and equipment companies, etc. Boring but necessary! But today I thought a little cuddle time would be perfect and more important than any work!

After our nap, we had a wonderful "therapy" session together. We started this week with two OT and PT appointments, and our "homework" tonight went really well! I got a "Bumbo" chair for him and it is awesome! I highly recommend it! It arrived today and I immediately put Maxwell into it and it was INCREDIBLE. It provides high support all around his body so that even though he has low muscle tone, he can work on strengthening his torso. And just in the past week he has made tremendous progress with head control. We still have a way to go but he is really working hard! I will make sure to take lots of photos tomorrow so everyone can see how ADORABLE and grown up he looks in his Bumbo! :) I know for some moms this might not sound like much, but trust me Max and I have had to work really hard to get where we are today! His development doesn't come quite as easily, but all the work is well worth it...especially when you see results like tonight!!! GO MAX GO!!! :)

Then after "therapy"/play time, we had SUCH a fun bath time. He was smiling (which is a relatively new thing) and there were even a few giggles. I was eating his toes and kissing his neck and he LOVES that...I keep telling him, "watch out Maxwell, I'm gonna just eat you up!" :) Then to complete a perfect evening, he fell asleep peacefully in my arms. Magical. Truly magical. Maxwell, I couldn't love you any more than I do right now. You are amazing! Thanks for turning this day around and making it wonderful like only you can! :)

Sunday, January 22, 2006


Yesterday we had to say goodbye to yet another lil' boy in the ICU. Lane Clary, who turned 6 months old yesterday, also had his last day in his earthly body. He had experienced numerous complications with his intestines and liver and the doctors had basically tried everything. So rather than prolong his suffering, his parents had the opportunity to take him outside with the ventilator and wires removed and he was held in love as he passed away.

Learning of his death really hit me hard. This is the 7th child that we have had to say goodbye to since Max's birth. I literally fell to the floor and just cried and cried...for the loss of Lane, the loss of all the other lil' guys, the loss of innocence, the loss of a "normal" life.

Last night was rough too for me personally. I had a little "breakdown." While it is so wonderful to have Maxwell home, it can be incredibly draining (physically and emotionally) taking care of him with all of the machines, medications and monitoring. Being a single mom would be difficult enough...but being a single mom to a special needs child is simply overwhelming! I was about to throw the kangaroo pump out the window...I was sooo irritated.

Max was fussy and all I wanted to do was go to his room and rock him. But I couldn't. First I had to unplug everything, move all of his machines, untangle the many wires, and reattach everything. This is virtually impossible to do quickly while dealing with an upset baby. SO FRUSTRATING! Of course I am sooooo grateful that there are such machines so that we can be at home, but now I am just so wanting to live a more normal life (well as normal as it could possibly be in this bizarre divorce/new town/special needs situation!) and it is frustrating when I cannot do the simple "mom and baby" things without spending 30 minutes changing rooms.

Fortunately today's church service helped get me refocused on the positive and I am doing my best to accept that this is what it is and I truly am incredibly grateful to have Maxwell home and doing so well.


Today is Max's 7 month birthday! And yesterday was the one month anniversary of Max's homecoming...and an entire month with no hospital stays! YAY MAX!

To celebrate this special day, we took a walk with Jim, Eliz, Tom Tom, Jackson AND all four dogs. Each time we leave the house for doctor appointments, etc., I am getting better and better at packing up him and his "stuff." Max can be off of his feeds for 4-5 hours per day, so I unplug his GTube and that is one less machine needed with us...which is great. I have a portable 02 tank that I wear in a backpack and his portable monitor sits in his seat with him. (And yes for those worried about him being out and about, I ALWAYS have my cell phone with me...just in case.)
We went by the water and it was an absolutely beautiful day! It was sooo great to see the dogs all having so much fun and have Max with us...this is something we have been so excited to do!

And here is my crew waiting for Jim to come pick us this not the cutest group ever?


I have REALLY been missing church and have been trying to think of ways we could go without exposing Max to too many germs. So this morning we tried and it worked pretty well!

We arrived early to avoid the crowds and then stayed in the church's private "nursing room" with the televised service. Elizabeth and Thomas joined us too. While it certainly wasn't the same as participating with the congregation, it still was quite a monumental moment to enjoy church with Maxwell in my arms! :)

We danced to the music, but then all the excitement got to Maxwell and he soon feel asleep. With him looking soooo adorable, it was hard to stay focused on the service! (As you can see in the photo, he now LOVES his hands and tries to put them in his mouth all the time...even when he is sleeping!)

Christ the King has been truly amazing to us. They have encouraged us with love, prayer, emails, calls, cards, dinners, and gifts...we feel so incredibly welcomed and love in this church and am deeply grateful to them! We hope to return the favor someday soon!