PRAYERS FOR EVAN

We were so disappointed today when we got a phone call from Sarah, mom to Evan (11 month old CHARGEr), telling us that their lil' guy ended up being admitted to the Children's Hospital PICU last night due to respiratory problems. :( Additionally his Gtube came out and wouldn't go back in. Yikes. These kiddos sure know how to keep their parents and their doctors on their toes!

Evan's father, Jeremy, is a wonderful stay-at-home dad and had the wonderful adventure of transporting Evan from their home to the E.R. at Children's, which typically is a two hour trip. However, they got caught up in major traffic and I believe they ran out of oxygen, he needed suctioning, etc. and by the time they arrived Evan wasn't doing all too well. Very scary!

He is supposed to be discharged the floor this afternoon if his respiratory problems subside to the point of not needing constant nebulizer treatments. So while he certainly won't be able to join us for the party (we were all so excited to get together!), at least he will be out of the intensive care unit. That's always a good sign!

But these kind of episodes are always a harsh reminder of how fragile these lil' guys are. Their bodies simply don't work as well as others...and the littlest of problems can turn out to be something major. (On a side note, I probably should stop referring to Evan as a "lil' guy"...this crazy guy is now weighing in at 22 pounds!!! Whoa!)

Evan, get better soon silly...we will miss you terribly tomorrow! And no more E.R. or PICU visits, ok? :)

VIDEO OF MAXWELL'S FIRST YEAR!!!

Below is a link to a video collection I did to celebrate the roller coaster of Maxwell's first year! Hope you enjoy! :) The second song "Mighty Max, The Unstoppable Boy" is a song written by our friend Dan Mello just for our amazing lil' guy. Thanks Dan!


Happy Birthday Mighty Max!

YOUR BIG DAY IS HERE MAX!!!

Happy Birthday Maxwell Bennett McKinley!

You certainly beat the odds...and not only are you surviving, but you are going to be thriving my lil' miracle man!!! :)

Wow, it is absolutely incredible to think of what you have endured this first year of your life. And yet here you are...being absolutely amazing and working so hard every day to achieve what comes so easily to others. You are inspiring to not only me, but to so many others around the world. Your inner strength and determined spirit is beyond any of us!

In just a few hours it will be the official one year anniversary of your birth. After nearly a month on hospital bed rest, you finally decided you had enough and you arrived at 1:52 p.m. after 13 excruciating hours of labor. I guess you wanted to make sure that I knew right away you were going to be a little on the "high maintenance" side of life! But every minute of that pain was worth it! And you have certainly has endured far worse, so you won't hear me complaining.

I remember being so absolutely terrified when you were born Maxwell...there were at least 15 medical professionals in the room waiting for your arrival. They were anticipating some respiratory issues because of your early arrival, but we didn't know about anything else yet.

You didn't make a peep when you were delivered, and I remember so vividly asking the dreaded question..."Is my baby alive?" I have tears in my eyes just thinking about it. They were working so hard to get you to breathe and didn't answer me right away. They immediately intubated you and rushed you to the ICU.

We didn't realize at the time just how sick you were...we thought it was "just" your collapsed lung. Everything else on you looked perfect and we were so excited that you were here! Within days my world began to collapse as each of your medical conditions was discovered. It was unbelievable Maxwell...how could so many things go wrong with my perfect lil' baby? Each minute was incredibly terrifying and we never knew what was coming next.

Six long months in the hospital, numerous life threatening conditions, four terrifying surgeries, countless infections and scares in the ICU, and a million and one doctor appointments/therapy visits/clinics...and the list goes on and on and on.

Your will to live and determination to succeed is above and beyond! You are surpassing everyone's expectations and being absolutely amazing. You are one strong lil' kiddo!

Later today I will be posting a new video "montage" that chronicles this crazy roller coaster of a first year. Hope your fan club enjoys! When you are older someday, we will watch it together and I can guarantee I will be holding you close and there will be many tears!

I love you my precious miracle. God brought us together, I feel that in my heart and soul. And I promise you that I will do everything I possibly can to give you all the best in life! You certainly deserve it!

Now let's go have a fabulous day of celebration!!! :)

THE GOOD, THE BAD, AND THE UGLY

THE GOOD
Grammy Suzanne arrived this morning, and we are so excited to have her here!!! And she was very impressed with Maxwell's progress since her last visit. It will be fun to have her with us for Max's birthday on Thursday and his party on Saturday. :) Thanks Grammy!

Then another extra special treat today was a visit from our friend Cameron, his brother Nathan and mom Rebecca. I met Rebecca through the CHARGE list and they came to visit us during Max's stay in the hospital, and Cameron (a four year old with CHARGE) was such an inspiration! He didn't have all the medical issues that Max has been dealt, but I still have hope that Max can do as well as Cameron is doing. That would be such a miracle! He is considered a "highly functional" CHARGEr...and also absolutely adorable! :) He let me hold him for awhile and he was just as snuggly as Maxwell! And along with some help from his mom, he even taught me a few signs. Soooooo cute! I love how determined he is. Like Max and many other CHARGE kiddos, he lacks a normal vestibular system that provides balance but that doesn't stop Cameron! He showed me all of his "boo boos" from all his run ins with the pavement, furniture, etc.

They are coming to Bellingham again on Saturday to celebrate Max's birthday. Thanks Anderson family! (And thanks for the monkey napkins...absolutely perfect!) We feel so blessed to have you as friends! :) And I am counting on Cameron to keep his promise to help teach Max how to eat and how to walk!!!

Another GOOD is that Maxwell gained weight again this week! YAY! He is now 15 pounds, 2 ounces. Woo hoo! My doctor was teasing me that it sounded like I won the lottery when I looked at the scale. Lots of whooping and hollering!! :)

THE BAD
Max went to the doctor's today and sure enough the nose is narrowing so they are putting a call into the ENT to get the procedure scheduled. However, we have to postpone anything until his latest cold clears. They won't do anything if Max is even slightly ill due to possible respiratory complications. We made some changes in his meds to see if that will help. So far no major temp, but lots of coughing, sneezing, wheezing, vomiting...the works. Poor lil' guy.

THE UGLY
So I was so happy after our visit with Cameron and his family...and feeling so hopeful about Max's future.

However, then I check my email and I get yet another frustrating, hopeless email from my soon to be ex who actually has the nerve to say he is "sick and tired of my whining." What??? Basically I had asked him last week to come up with some ideas on how we are going to handle this situation. I (along with all my doctors and therapists) keep emphasizing to him that I cannot work because I am Max's full time caregiver/nurse/therapist, but he doesn't seem to get it. If I am providing for 100% of Max's physical needs, shouldn't he be responsible for the financial needs? I would love to be continuing my career and be financially independent from him, but that simply is not an option right now because of Max's health and developmental needs. That is not "whining"...that is just stating the facts.

The bottom line is that he didn't come up with any reasonable solutions and he immediately rejected any of my ideas, so we now have to wait for the judge to intervene. (One option he actually had the nerve to include was a "loan" to me while I stayed home to take care of our son and his special needs...yes you read that correctly, he said he would "loan" me money.)

How pathetic that my ex's involvement and responsibility in Maxwell's life will be determined by a judge, instead of voluntarily by himself. Oh well. Just a few more weeks...and hopefully we will have some closure.

* That's all for today...the good, the bad and the ugly. I think I will stay focused on the GOOD. I loved our special visitors and I definitely enjoyed Max's weight gain! Hopefully tonight we both get some sleep and he wakes up refreshed and ready to go. I will definitely try and post some new photos tomorrow...I have been taking them like crazy!

MAX MISSES FIRST DAY OF SCHOOL

Maxwell and I were super excited to start "school" today...we have been working with the WCEL for the past month to get officially enrolled and today was supposed to be our first day. However, we couldn't go because of Max's congestion and coughing. Not a good idea to bring possible germs to a group of special needs kiddos! We will try again next Monday.

We have heard rave reviews of the therapeutic parent-child playgroups and are happy there is such a wonderful opportunity in our area.

For more information, you can visit our wonderful friend Dylan's blog: http://dylanupdate.blogspot.com/2006/04/dylan-goes-to-school.html

POSSIBLE NOSE ISSUE

Yep, I think that time is coming...time for another nose surgery. Darnit!!! His right nasal passage appears to be blocked. I have noticed in recent weeks that it was increasingly difficult to suction that side, and this morning I was not able to get through at all. To Max's dismay, I repeatedly tried and tried and no success.

I am tempted to call the ENT on call doctor to arrange something for first thing in the morning, but I know they would rather I wait until tomorrow to make the schedule. I don't like when these "discoveries" happen on the weekend and I have to wait. It's not an "emergency" but I just want to get an appointment and the procedure scheduled ASAP.

Fortunately the other passage appears to be satisfactory and so his breathing might be slightly more labored, but not terribly.

I am hoping we can do this procedure quickly and that it will not require an overnight stay. Poor lil' guy. He was so sad this morning when I was trying to suction him...I just wish he could understand that I am doing all of this for his own good. Fortunately "mommy love" was able to calm him down afterwards, and then I gave him a nice warm, relaxing bath and he was happy once again. We'll keep you posted.

CONGESTION AND COUGHING

We think Maxwell may be coming down with another cold...or he is dealing with some allergies. He has been slightly more congested over the past 24 hours, as well as coughing and wheezing. He was up throughout the night coughing and coughing. Fortunately last night we were able to have a nurse (what a relief!) and she agreed that he may be coming down with a cold. We started increased inhaler treatments last night to deal with the wheezing.

I do everything I possibly can to keep the air clean in his room and our house. I purchased a VERY high quality vacuum (never thought I would spend THAT much on a vacuum, but anything for Mr. Max!) and use it just about every day. We purchased high quality air purifiers for his room and play area which are running constantly. And I dust and clean all the time. This morning I have been scrubbing down the purifiers to make sure they are in tip top shape and ordering more high level parts. Not sure what else I can do as far as keeping the air clean.

He is taking a nap right now and snoring like an old man...hopefully today he breathes a little easier.