Tuesday, October 30th - Back to ER

Hi there, first of all Alex is fine but his broviac line just split open during last night's flush and after waiting for an hour to hear from hospice that it would be another hour before anyone could get to him, we headed for the ER. Three hours later Alex left with an IV in his right arm. As scared as he was about getting a poke he never flinched or cried at all while getting the IV. He truly is an amazing child.

So today we headed back to the hospital at 8a to have his line repaired. Three hours later we leave with Alex's third line and flu shots for my sister and me. Alex appears to being doing as well if not better than the last time he was seen by the clinic staff. We are currently gathering information on the risks/benefits of having another MRI done. Steve and I need to make some big decisions and more information would be useful. So I'll let you know when we know our decision.

Yesterday my sister and mother-in-law went to visit the funeral home we have selected. It is a beautiful place right between Alex's two favorite parks. It is very close to home and I like that alot. Anyway, I could not muster the strength to go and actually enter the place so they bravely did it for me (us). When Stephanie left she told the funeral director, " I hope I never see you again." To which he "dittoed" the sentiment! I also had Stephanie and Linda pick up some black cloth to cover our mirrors if Alex should pass. I like this ritual alot and may even take up some more if the situation actually arises.

So I just wanted to fill you in. Love and hugs!
God bless.
G

Monday, October 29th - Happy Day!

Good Morning! So Alex had a wonderful birthday MONTH thanks to all of you and yesterday was especially nice. At 5a, during a body shift in the big bed, I wished Alex a "Happy Birthday!" He said with awe in his voice, "today is my birthday?" To which I replied, "yes" and he fell asleep with a smile on his face. I got up at 7a to purchase party stuff and donuts! I never thought I would be happy about having a 24 hour Walmart nearby, but it came in handy yesterday. On my way there with the sun rising in a beautiful sky, I felt pure joy. I was so worried that Alex would not be with us on his birthday, but he is and that makes my heart sing. I just need to keep that feeling every day!

sunglasses, When I got home, Alex was awake and ready to open gifts. Yesterday he received SpidermanWII game and t-shirt; Lightning McQueen collector set and racetrack; Transformers t-shirt and movie; a case of silly string; a pirate's chest and a Shining Star Bear that allows Alex to name his own star! That is so cool to me!

All of Alex's friends that could make it with less than 24 hours notice, joined us at Go Paint! for a pottery painting party. Alex had a blast and it looked like so did everyone else. Unfortunately, after the two cupcakes worth of frosting, Alex was quite nauseous. We upped his meds and he did better later in the day.

This weekend was also full of some fun activities with dear friends. I'm ready for a day off!

One last thing, the other day, Alex said he wanted to wake up early to watch the sun rise because "that is the best part of the day." I thought that was so awesome.

Okay, have a wonderful day! I know I will!

Love and God Bless!
G

Thursday, October 25th - Most Important Things

Hi Everyone, well yesterday was a very good day for Alex. The two days prior were not so good. Alex was very tired, took alot of oxygen and yet still had low energy. We think this was due to the increase in Medazolam over the weekend. Nonetheless, yesterday was a different story. The birthday party at Alex's favorite breakfast restaurant probably helped boost his spirits. On Tuesday, we made arrangements with the restaurant's owner and the evite went out. Alex had a five pancake cake with whipped cream frosting to celebrate the event. All of the kids were in costumes and Steve and I were dressed up also. I was Lady Guenevere and Steve was Lord of the Torridors (or something like that).

Alex got this incredible talking faux parrot that is still amazing us! And today he opened his Pirate kit and turned into a real pirate. Later today we hope to make it out to Build-A-Bear and use the gift card he also received yesterday. I can't say enough thanks to everyone that came on such short notice. Your support made it a very special party.

So Sunday is Alex's real birthday. He wants the house decorated again and since some dear friends are in town from Seattle and Santa Cruz; we are going to keep this party low key. Wish us luck!

So last night as Alex was fading into sleep he said the following:

"Having fun with friends; sleeping with you and Zoe and Grace (I'm pretty sure he meant dad) that is what is MOST important. Oh and watching my shows in the morning."

I just thought that was too sweet.

Okay, day going on, gotta go.

Love and God bless!
G

Monday, October 22nd - Six days and NOT counting

Good Morning. Well it was quite a roller coaster weekend for everyone here. On Thursday night, Steve had a conversation with Alex about journeys. He told him how some journeys can be scary but when Steve goes on a journey he always has his family with him. He then told Alex, "You won't have to fight the bump forever." To which Alex responded, "I know". Can you say "Wow"?!?! What a mind blower that is, huh?

Okay so let's go to Friday night. Here's the bedtime dialogue as best as I can remember:

A - "Mom, I'm scared to go to sleep."
G - "Why baby?"
A-"Because, I'm afraid that bad dream will come back."
G-"Well you know bad dreams rarely come back. Can you tell me about your bad dream?"
A-long hesitation
A-"Well, I was in the hospital and there was a can with a string. I pulled the string and out came a bunch of cigarettes and I was really scared."
G- pause "Oh baby, I'm sorry you were scared, but I'm confused. What about cigarettes coming out of a can scared you?"
A-"There was a button and I pushed it and I was dead."
G-(no idea what I said, but I tried to comfort him)
G-"Alex, what did it mean to be dead?"
A- long hesitation
A-"I was in the ER and I got pokes and shots and I was really scared."
G-"you mean just like the last time you went to the ER?" (Last ER visit was after he stopped breathing after the morphine and had to be revived by paramedics and then we went to the ER in an ambulance. He was put on an IV and stayed for several days, which was last hospital visit."
A-"yes".
G-"Well, Alex your dad and I are working very hard so that you never have to go to the ER again and never have to have any more pokes or shots. That is why we have a team helping you fight the bump."
(This was followed by some more comforting words, songs etc.)

The bedtime continued to be restless but I was in excruciating pain from my shoulder and completely fatigued by this time, so Steve stayed with Alex and ZG and I slept in the nursery (the master and nursery doors are inches from each other). I awoke at 1:30 to the sound of the suction machine and Alex gagging. I came in and looked at Steve and knew that he had not slept and that the night so far was very difficult for him and Alex. We finished with the suction and Alex told us his tummy hurt, so we gave him a Tylenol suppository for the pain. He laid back down and Steve got up and whispered in my ear "Watch over him" then left the room.

I watched Alex toss and turn with pain and anxiety until 2:30am. I then got up and told Alex I would be right back. I found Steve on the couch and told him that Alex was not sleeping and we needed to call the nurse. She picked up immediately and since Alex was having so much trouble with his secretions, told us to give him more Robinul and that she would call back in 45 minutes. So we did that and as I was returning the meds to the kitchen, Steve and Alex started making shadow animals on the bedroom ceiling. Pretty soon, Alex was a bunny going "boing, boing, boing" all over the ceiling and Steve's hand was a monster which was always defeated by the boingy bunny. We were laughing so much. I then had a moment of genius and went to get the 10 inch Spiderman action figure Alex had received that afternoon from Leo F. (a son of one of Steve's friends, that Alex has never met). Anyway, Spiderman was soon battling Alex's prayer bunny (stuffed animal that says the "now I lay me down to sleep" prayer) and the fun and laughter just kept coming. At about 3:30 am or so Alex finally said, "Okay, I think I have had enough." So we rapped up the shadow party; promised to do it again the next night and we all went to sleep. It was quite the night.

Saturday was a gorgeous day here and Alex spent time in his Sky chair with his dad and I made chili. We had some dear friends over and played some more Wii. Then Sunday morning came and Steve told me that "he was never so happy to see Alex awake as he was that morning." Alex had slept in and also took a long nap Sunday afternoon. Sunday was the first day that I would say was a "bad day" for Alex. Even though he had a friend over, he just was slow and seemed to have more difficulty breathing. He wore his oxygen quite a bit yesterday too.

So last night went okay. There was suctioning at 4am, but that has become the norm now. Alex has been making jokes and seems in better spirits today. It may be due to the fact that my sister and her family on driving up today and will arrive this evening. Alex has already asked if he can stay up to see his cousin!

Alex has not eaten much (if any) in the last few days. He has peed though! Praise the pee! And the nurses say he is not dehydrated. His Spider milk now has glycolax and yogurt added to it. I think some of his tummy pain is partially due to constipation and some to coughing soreness.

So today begins another day. Make it a great one! Tell everyone you love how you feel and give some one special a big fat kiss!

Love and God bless!
G

Friday, October 19th - Odds and Ends

Good morning. So I want to tell you all some things that I keep forgetting. First of all though, Alex is having very good days and very undesirable nights. He has neither, eaten, pooped or peed in several days. I'm concerned about his hydration level too. But through all of that Alex still finds pleasure in his days. You should see him "change position" on the Sonic Wii Treasure Hunt game. The character does this kinda cool "beam me up" graphic which when Alex saw it for the first time made his chin drop and say "Wow, Mom did you see that? That was so coooool!!" And from that point on in the game, he forgot about winning treasures and just wanted to repeat that cool effect. Yesterday, we had an impromptu lunch at Snooze with some of Alex's favorite people! Which was followed by a play date here while Steve and I met with the hospice chaplain. I have no idea how we had the conversation we had with her about "arrangements". I just know that life is pretty surreal at times these days and somehow that helps you get through stuff you never imagined in your whole life doing.

Anyway, after taking a long drive with Nonni and dad (read as Alex's favorite napping place); Alex came home and even more friends started showing up. Pretty soon we were having a dinner party and the house was full of laughter, good Thai and lots of wine. Alex entertained the masses with his new "Incredibles" game! It was a very special night.

So back to the odds and ends. I have realized that I have not written about Zoe Grace in a very long time (I think). So I want to tell everyone that she is doing quite well. She has not been to school much in the past month or so, and she really does not seem to mind. She loves to watch Alex's Teenage Mutant Ninja Turtles DVD and if we did not entertain her in some other way probably would watch it 24/7!! She also feels and knows the energy of the house. You may wonder how I know this and let me tell you. As you may have read, Tuesday was a VERY hard day for me. I woke up crying and could not really control my tears much that day at all. Anyway at one point, I was in the kitchen (not crying) trying to figure out what to eat for breakfast and Zoe came running from the play room (directly across from kitchen) and jumped into my arms. For the next few minutes, we just stood there holding each other. She had her arms tight around my neck and her legs even tighter around my waist. That same thing happened later in the day and I must say at a perfect moment. I love this little girl and when I think of the tragedy that is predicted my heart aches and my tears come immediately.

Which leads me to my next point about "Why?" I have concluded that there is no "why". There is not one possible reason any of this should be happening. And if someone were to come to me and give me a reason it would be so inadequate as to explain why Alex's bright, shining beacon of intelligence, beauty and pure joy has to be extinguished. It could never help me understand the reason Zoe may never remember her brother. Nor why any mother is asked to survive without her first born. There is no WHY!! And somehow that knowledge gives me peace. At least I don't dwell on "Why?" anymore (okay sometimes, but not as much).

Another revelation I had just minutes ago and the reason I got out of bed to write to you concerns mortality. First some history. My paternal grandmother, who was an angel on earth, passed of breast cancer at 55. She never smoked nor drank a day in her life. My dad, who never went a day without smoking or drinking, passed at 55 from brain, lung and liver cancer (and that is just as far as they looked). So I have had it in my head since 1998, that I may not make it past 55 and that the day I turn 56 would be a wondrous day. Lately, my "clock has been ticking" and the thought of having a baby has risen. Steve said to me last night, "I don't want another baby, it is too late in the game and I don't want to raise a Down's baby. But that does not mean I don't want to raise another child." Then we went on to talk about adoption and timing so ZG would not get confused, etc. Anyway, in the wee hours of this morning, I started calculating how old a child would be if I were to get pregnant when I turned 55. Then I realized, how ridiculous this thought was because of Alex and his prognosis. Here I have been thinking that I was good til Alex was 18 or so. When in reality, I only have today. Just today. And so do you. You only have today with the ones you love and if you don't realize that every second of every day then you are living a lie! Don't count on any years to do anything. Why would you if you have read this blog for a while?

Okay, I'm off my soapbox. Today is a very busy day. We will be going to pick up the pottery Alex painted last Saturday with his cousin, Addison. And will have a mini painting party with the same friends from yesterday. That is after the oxygen guy comes this morning as well as two nurses visits and I am having lunch downtown after that, then painting. If you want to join us, we are thinking 2:30 at the mills. Just show up! Love to see you!

Finally, I just want to say thanks for all of the support. Your comments lately have made a world of difference and I am most appreciative!! A dear friend told me the other day that it takes him several hours to recover each time he reads the blog. I know this feeling since it is exactly what I went through reading the Steadman's blog. But just so you all know, you don't have to read this stuff! I don't know that I would if it took several hours to regain my composure and ability to function. Anyway, I do appreciate your comments.

Love and God Bless.
G

PS-Melinda, thank you for the comment. I would love to talk to you but don't want to interrupt your day. Perhaps you could email fightthebump@comcast.net and we could set up a time that works for both of us?

Wednesday, October 17th - ?

So my eyes popped open this morning at 4am. I have no idea why, but when I looked over at Alex I could not tell that he was breathing. When I finally did see his body move with breath, it only seemed he was inhaling. I can't express the terror of that moment. I kept watching and feeling and finally hooked up the pulse ox machine to check out his stats. His blood ox was at 100 (nurse explained this is not so good, since it indicates he is not releasing carbon dioxide) and his heart rate was up more than normal for sleep (this too is bad, since the heart will work extra hard to compensate for the poor breathing). I tried to get him to wake up so I could adjust his position (for his airways) and he did not respond until I finally just moved his body. (Another bad sign). So I went in and got Steve and we just stayed with Alex for a long time. I finally had to leave the bed and ended up on the sofa with single tears running down my cheek.

Steve came and joined me for a while and we talked about how horrific this is and this is must be what they meant by "it will be very hard towards the end." Yesterday was very hard on me and last night did not ease any of my discomfort. This morning Alex decided he wanted to get up and go to PT (to see Kerry) and so we headed off. He had a great time with Kerry and I videotaped the whole thing. He loved kicking her down and then swinging and kicking large bolsters over on me! There were even bugs on top of the cylinders just to add to his pleasure. He took a few steps and then we headed home.

After that, I went to my hair appointment and have a surprise for you all!! I'll post pics soon! Anyway, while I was gone, Alex had a wonderful visit with some of our friends who kindly brought us yummy Indian food. Everyone but Linda was resting when I got home. Steve and Alex spent a lot of time on the Wii this evening playing some fun games. Alex is now sleeping and Steve and I plan to both be in bed with him tonight.

For the last two evenings, Alex has told Steve "Daddy, if you have any bad dreams just squeeze my hand." This with the question Monday at Mac Grill tells me Alex is quite aware of his changing body. Steve and I have discussed whether or not we should tell him that we know his body is changing and that he will not have to fight much longer. That we love him and our warmth and love will always be with him and his with us. I want to tell him he is the bravest boy I have ever known (wouldn't be the first time) and that being his mom is my greatest, most fulfilling accomplishment of my life (Zoe is too, for the record). As I type this I just finished a phone call with Alex's play therapist. She concurs with our thoughts. I'm sure much more thought will be given to this in the very near future.

I'm going to bed now. Pray for our beautiful, strong, courageous boy.

Love and God bless
G

Tuesday, October 16th - Hard Questions

Good Morning. So yesterday was a very hard day for me. We took the kin to the local aquarium and then out to lunch at Mac Grill. While we were enjoying our lunch, Alex asked me "Mom, how many days until I quit choking?" I responded but the hole in my heart has yet to recover. Somehow this question revealed to me (again) that Alex is very much aware of the changes going on in his body and no matter how hard I try to ignore the facts this is really happening.

I went into a mini depression and I really don't know if I'm out of it yet. Alex really did have a great weekend. He even took three steps on Saturday night, while Steve and I were out on the town. His Nonni said that in all of her time spent with Alex she has never seen him laugh as much as he did on Saturday with his cousins. I think Steve and I should go out on the town more often!!! Anyway, with news and rejuvenation like that I was pretty strong in my hope and faith.

This is really scary and Steve and I have started having discussions no parent should ever have to have. How do you make such decisions when your child is such a bright and shining star in your life and the lives of so many others? I really don't know how to and I REALLY don't WANT to either!!! This sucks on so many levels. Okay, I'm slipping. Must come back!

I'm done here. This spilling of inner thoughts is bringing me down. If anyone knows of a good housekeeper, please let me know. I'm desperate!!

Love and peace to you all.

G

Songs of Love Resolution Information

I have heard from several of you that Alex's song would not play after download. The song has been re-uploaded by the Songs of Love staff so it should work now. If you have already paid for the song and still want it; just give them a call and they will email it to you (after verifying your transaction). Their number is 800.960.SONG.

I hope this helps!

Thursday, October 11th - Songs of Love

To hear/download the song or ringtone for Alexander's Song of Love go to www.songsoflove.org and click on the Family and Friends Song & Ringtone Download link. Simply type "Kasnoff" in the field and the number Child's last name13489 in the Child's Record Number. They will ask for a small donation, please help us support this organization.

I hope you enjoy the song.

God Bless.
G

Wednesday, October 10th - Dr. Lee's Visit

So the week started off with Alex having to go to the hospital/clinic to have his broviac line repaired. They had to put an IV in his arm. Alex was such a trooper. He was very upset about getting another "poke" but when it came time to put the needle in he did not cry or even flinch. The catheter broke on the first try too, so he had to endure two pokes. It was an amazing moment of pure bravery and courage.

Alex did not sleep well that night and was really exhausted all day yesterday. He asked to go to bed early last night but according to Steve, did not get a good night's rest then either.

Today we started the day with a return to OT/PT. Alex's therapists have coordinated overlapping appointments so that Alex only has to make one visit to see both of his favorite people. It was so great to see Alex laughing and smiling. He had a great time and so did I just playing with him.

Steve's sister and her family arrived today. We are so happy to have them here with us. Alex is loving having the boys around to play video games with him. We are looking forward to a great visit.

Today I woke with a sense of hope. A dear friend of ours made arrangements for her acupuncturist to come by to see if he could help Alex. He has had prior experience with brain stem tumor patients in the past. Before he examined Alex he told us the criteria that would need to be seen to know whether or not he could help. He talked about a vein in his finger and said if it is visible to this line then there is nothing I will be able to do. During the exam, he showed me that Alex's vein is to that line. The consult ended soon after that but not before Alex bravely accepted his offer of two acupuncture needles to help him feel better. Afterwards he spoke to Steve and me privately. He reconfirmed that unfortunately there was nothing within his power to help Alex. I (stupidly) asked if he could tell how much time Alex might have and he replied, "perhaps two to four week; it is severe".

These words brought such a wave of sadness over me I was barely able to maintain my composure. I absolutely hate this. Again, I must say "IT IS SO UNFAIR"!!!

That's it. Alex wants to go outside and I am going to go with him.

Love and God bless.
G

Saturday, October 6th - Counting Days

So it is day break and I can't sleep. Alex is doing okay. I wish he would eat more or any really. We raised his Medazolam up Thursday night because he was so scared about choking and would not sleep due to his fears. He now only wants angel hair pasta (with alfredo sauce) because it is easier to eat.

My mom and stepdad are in town until tomorrow and it has been great to have them around. ZG has turned into a momma's girl lately and I absolutely adore it. She is such a sweet child with such a big spirit. You can't help but be infused and lifted by the energy she puts out.

So I woke up Tuesday morning with the thought that it was 13 days since Alex left the hospital with that "six week window" looming over his head. I can't wait to get to 43 days post and tell the doctors Alex is doing well! I want to make each day count but not in that way!!! I am struggling with this so-called countdown. I try very hard to think of it as a "count up" but it is difficult at times.

I want to thank some more folks. Please know that my mind is not right and if your name is not on these lists, it does not mean that I don't love and adore you. Just that I am exhausted and can't remember my own name at times.

Heartfelt gratitude to our dear friends:

• Jerry and Martha
• Susan, Jevin, Emma and Mitchell
• Diane and Josh
• John and Nicholas
• Kerry
• Peggy
• Jenny
• JoAnne
• Dr. Foreman
• Wanda
• Bridget
• Gayle
• Katie
• Linda
• Christina and the boys!
• Barbara and Burnsie
• Ms. Lisa
• Katrina
• Kathleen
• Eric Alexander
• (and to all of you that read this blog and send us your positive thoughts and comments)!

Okay, well I think that is all I had to say right now. We plan to revive the Play, Pavers and Prayers event. Just not this weekend. Next time, we will set up individual dates with friends so that everyone can have some one on one time with Alex. It should be much more manageable this way.

See you soon!

God bless!
G

Instead of "How are you" say . . .

Here are some alternative greetings for you to consider:

• What's up?
• How's it hanging?
• Peace.
• Peace Out.
• Seen any good movies lately?
• How about them (Sooners, Rockies, or your choice)?
• Read any good books lately?
• I got some money for you.
• Wanna dance?
• Have I told you lately that I love you?
• Can I borrow a cup of sugar?
• May the Force be with you.
• Mind if I do that for you?
• Can I get the door?
• You've just won a NEW car!!!
• What's your sleep number?
• How's the play area coming along?
• Can I bring you more wine?
• Would you like these Rockies tickets?
• How would you like to meet Oprah? She's been dying to see you?
• How do you like me now?
• You were in my dream last night.
• I brought you this pumpkin!
• Happy Autumn!!
• Feel the POWER!
• Wanna cookie?
• Gee you look great!!
• Have you lost weight? (even if you know I have not!!!)
• Keep the faith.
• Be strong.
• Mind if I cut in?
• Can you hear me now?
• What's your sign?
• Isn't it a beautiful day?
• Can I get you some coffee?
• Wanna go to the spa?
• I just love your kids, dog, house, car, etc (you pick)
• I found this money tree and wanted you to have it!!
• God bless you.
  

Please don't use these greetings:

• How are you?
• How's the family?
• Can I borrow a ten spot?
• Can you help me with this ingrown toe nail?
• Did you see my new car?
• Hey, your dog just crapped in my yard!
• How are the kiddos?
• Can I get a ride?
• Smile! (I hate it when people tell me to smile!!!)
• Can I get you some more blood sausage?
• I believe in hell.
• Have you decided on the corneal donation yet?
• Have you gained weight? (even if you know I have)
• You're my heeeerrrro.
• Hey there big mama!
• Sleep much?
• You've just won a free mountain vacation!!!
• Sorry, mam, but that's gonna cost you.
• I feel your pain.
• Can you mow my lawn?

I hope this helps.

GB,
G

Tuesday, October 2nd - Fabulous Days!!

Hello Friends,

Wow what incredible days we have had recently. I've posted some pics for you to enjoy. First of all I want to say thank you to Susan and The Brown Family and the kids at Primrose in Arizona for a wonderful gift and lovely card! It was such a surprise and we have the banner hanging in our living room so we can enjoy it all the time!! You are so kind and loving to think of Alex and follow his story. We cherish your kindness and loving spirit!!

I also want to thank the following for their generosity and kindness towards Alex and our family:

Judicial Arbiter Group, Inc
Don Kramer and his associates
The Fix family
Missy Hooper
Karlyn and Vikram
Jo-Nell and Katharine
Sky Chair
Kris (OT)
The Honorable Virginia Chavez
Alex Garlin
Patricia and Howard McCarthy
Ben Michaels
The Honorable William Meyer
Kathy Cavanaugh
Valerie, Fernando, Gabriela & Sebastian
Courtney & Steve
Tina, Gregg, Samantha and Aidan
Paul and Diane
Stephanie, Blake & Evan Winston
Ms. Alicia
Ms. Grace
The Slater Family
The Hunter Family
Ben, Crissy, Esther and Wiley
Mark, Thea, Callan and Allyson
Merrie Jones
Joanne Olmstead
Kat
Ms. Olga
Nadine
Heather and Alan
Steve K.
Beecher
Patty
The Honorable Daniel Shannon and Joyce Shannon
Kevin and Cydney
Heather and Duncan
Marilyn and Ben
Annie, Sam, Jackson and Alex
Chantall and family and the TC2 community
Jane and Lucas
Brook, Kelly, Casey and Zack
and everyone else that has loved and supported us through this journey!!

We love you all!!

So, some of the pics show Alex enjoying his new Wii game. Going fast at the Nature and Science Museum with his cousin. Then Alex and friends at the first Play, Pavers and Prayers party. Alex made a beautiful stepping stone and so did his friends. We had to cancel this last Sunday's party due to exhaustion, but will do it again soon (just on a smaller scale).

Then there are pics from the birthday party Jo-Nell, Judicial Arbiter Group, Inc. and the Downtown Aquarium made possible and absolutely fantastic! Spiderman showed up as a complete surprise to Alex and he really made it a very special day for Alex and everyone in attendance. It was incredibly joyous to see Alex enjoying himself and his friends so much!! I know everyone there was moved and felt the wonder of the moment(s). I had a blast but singing the "Happy Birthday" song really took me off guard. I almost lost it right then. I so don't want this to be Alex's last birthday and am putting so much energy into prayer and hope.


Finally, there are pics of Alex on his new track (riding his trike!!!!) and in his graciously donated Sky Chair. Steve and company have built a swing arbor, track and installed mulch in the play area. Also completed are a new fence for the back yard and the transformation of a Bali firebowl into a really neat water fountain with changing lights at night!! This is really coming together thanks to all of the hard work of many dedicated and loving persons! Thank you all!!

Also, I want to tell you all about Alex's introduction to Dr. Jesus. My sister's in-laws drove all the way from Oklahoma to tell Alex a very special story about the greatest superhero of all time, Dr. Jesus. Dr. Jesus' special power is taking away bumps (at which Alex replied "I have a bump!") and he loves healing children the most!! Alex (and everyone there) called Dr. Jesus to come and take Alex's bump and allow him to run and play like he used to do before the bump. Since then, Alex has asked Dr. Jesus to take his dizzy eyes away. This morning Alex proclaimed, "Hey, Mom, I think my bumps are gone. I think Dr. Jesus took them away!" I agreed and told him Dr. Jesus could do that and that he was absolutely right to say so.

There have been so many blessing lately that I can't even recall them all. Steve's dear friends from California came out this past weekend for a visit and my sister and her family were here for the bday party and to offer more support as well. Steve's sister came out as well and had a lovely visit with us. We have been surrounded by so much love that one can only be grateful and filled with the energy and support of those around us.

Alex is actually doing remarkably well. He has slept well at night mostly. And except for some nausea episodes (tummy bug hit this house over the weekend) that are very scary for everyone; Alex has really seemed to enjoy being home. He got upset with me yesterday, when "no friends came over to see him". I had to remind him that his cousin had just departed around noon and that he counted as a visitor. Everyone here is exhausted from the last week or so and I had to call for a break from visitors. I think I am going to have to limit our home visits so that the complete exhaustion does not get more of a hold on us. I still feel like I could sleep for days, but with Alex's medicine schedule, it is impossible to sleep past 7:30am each day. The days get so busy too that I find my self overwhelmed with basic life stuff. I even took a week off from opening mail just because I couldn't handle it!

Okay, well that is all I can think of right now. I hope each of you make this a great day and enjoy those who love you!

God bless!
G