Journal History

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Thursday, September 18, 2008 3:11 PM CDT

Another quick update to let you know that Andrew's blood cultures were indeed positive before 24 hours. Don't know the ID of the bug yet but will know tomorrow so he will remain on IV antibiotics for at least a week. His fever seems to be a bit better today and he seems to look a bit brighter. We have come to learn that we begin treatment of him the moment he shows any signs of possible infection. We have yet to do this in error and it has probably saved him several trips to the ICU for sepsis infections.

We are incredibly proud parents today (not that we aren't always but.......) Melissa was awarded top grade 8 female athlete of the year at school today. That is an amazing accomplishment for any young woman, however, with Melissa having type 1 diabetes and managing her disease and still rising to the top of her field is just a true testament to her dedication and perserverence. I have said many times, and mean it more today than ever........ I want to be like my daughter when I grow up.

Please say some extra prayers for Martin this week. He is such an amazing and dedicated Dad and Husband. We are dealing with alot at home with Andrew's illness this week and Melissa having been sick and he also has a lot going on in his work life right now and I know that he would appreciate some extra prayers.

Wednesday, September 17, 2008 11:39 AM CDT

Quick update:

Andrew has spiked a fever this morning and we are starting crisis intervention meds and IV antibiotics. His sister is currently down with a virus but it seems very different than this. Also, he has a gtube site infection (mild) and is still in the window of time for a vaccine reaction..........so we really don't know what it is but are assuming sepsis (positive blood cultures)

He had a good week up until now and enjoyed visiting the Campbell Valley Fall Fair on Sunday afternoon. I will post pics later. He went to the fair and also for a good walk in the woods. (which was our 'hike' for this week)

Please pray for quick answers as to the source of the fever and for healing from it.

Tuesday, September 9, 2008 2:07 PM CDT

“Mommy, can I climb that mountain one day???”

Andrew has looked at the beautiful mountains around Vancouver and asked us this question many a time. Or it comes as a statement:

“I am going to climb that mountain one day!”

I tell him maybe one day but know that, on his human legs, he will never be able to hike to the top of giant mountains as his brothers and sister and ourselves love to do. When walking more than a few blocks tires him completely some days then climbing mountains may seem to be an unsurpassable goal.
Now look at the picture a the top:

During the second week of our summer vacation we went to Whistler. We had a great time canoing and roaming around and having fun. Andrew also achieved one of his goals. He went to the top of a very LARGE mountain. He didn't walk, he road a chairlift, but he was at the top of the world and, yes, he climbed his mountain. My heart rejoiced for him.

Last weekend we took the older three kids hiking while Andrew stayed home. This time, going up a mountain involved walking for 5 hours so Andrew had fun with his Auntie Do instead. We went down to the Mount Baker area and, for those who are into hiking the North West, we did the Damfino Lakes/ Excelsior Peak trail. It was a good hike but not too strenuous as we haven't had a lot of opportunity over the summer to do more strenuous hiking. We left the parking lot in cloud, which was disappointing as this is one of the beautiful view hikes of the Baker area. We started our walk and passed beautiful ponds (that are supposed to be lakes) and walked through amazing meadows that were still blanketed with wildflowers, the clouds breaking here and there on the way up but hugging the hills quite closely. The kids were still in awe of their surroundings. I find it very hard to fathom that someone can spend time in the vast wilderness like that and not be in awe of all that God has created. We made it to the top of Excelsior and walked for a ways along the High Divide. To our left you could see green valleys, and hills. To our right, thick white fluffy cloud filled the valley to the sky. Knowing where we were I told the kids that Mount Baker was RIGHT THERE. That just behind those clouds, sitting just over the valley, was that huge majestic peak that we see from a distance a clear days. They nodded and we continued to walk. We were walking back along the ridge to begin our trek back when I glanced to the left, there was a small break in the clouds and there was Mount Baker, right where I said it was. The kids looked in awe (I'm sure part of what they were thinking was 'hey, mom's not nuts!' ) but there, where there had only been cloud was a mountain that had simply appeared where there was not one moments ago. I stood in awe and the words of a newer praise song that we sing at church and that I have in my home came to mind:

Saviour He can move the mountains
My God is mighty to save
He is mighty to save
Forever author of salvation
He rose and conquered the grave
Jesus conquered the grave…

and also the verses from Job:
…”God's wisdom is so deep, God's power so immense, who could take him on and come out in one piece? He moves mountains before they know what's happened, flips them on their heads on a whim.”

I reflected on how God can make mountains move if He commands it. How, yes, the clouds may have hidden the mountain from view before we saw it, but God could easily pick up that mountain and place it somewhere else if He chose. God has also, figuratively speaking, moved many mountains in our lives and especially in our lives with Andrew. No, they aren't majestic volcanoes, but they are infections, school issues, beating odds and flourishing as a family in times of hardship. I felt strongly that God wanted to remind me that He is there with amazing strength and power and to trust Him to move the mountains in our lives. That does not necessarily mean that mountain to be moved will be the complete healing of Andrew on earth. What I believe it does mean is that I am to continue to trust Him to move the hills and mountains that we face daily when it comes to caring for Andrew and his siblings. I was reminded that God is one that clears our path of the obstacles in the way, that He is the one moving the mountains that we need moved.

Amazing what a walk in the woods can do to renew your thought process and reaffirm the Faith that you already have but the Faith that always needs to be reaffirmed when you walk a hard road. Your mountains may be different than mine, but I know the God that moves our mountains can move whatever it is in your life that needs to be moved also. Just have faith.


We are hoping, as a family, to hike each weekend in September. Even if it is short. It might not be as majestic as last weekends but we thought it would be a neat challenge to try and achieve. In October there are several retreats etc. that we are all spread out to so we hope to spend this time with the older kids during the weekends of Sept.

Check out the photo page for photos of last weekends hike at Baker.

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Thank you to all of you who prayed for our friend Benji last week. His mom has left a note in the guest book. Please take a peek and thank you again for praying for and encouraging our special friends.

Sunday, August 31, 2008 2:15 PM CDT

I will come back with a full update of the past few weeks tomorrow or later tonight. I come to ask, friends, for special prayers for a little boy we 'know'. Benji and Andrew are so very similar. In fact, I have shared some of Andrew's information through Benji's mom, with Benji's specialist at John Hospkins. Benji also has a severe, degenerative form of dysautonomia similar to Andrew. They both have one of those orphan dysautonomias yet to be named. Benji is incredibly sick. You all know Andrew has had many line infections before. I think I have shared with you that I fear yeast more than bacteria due to it's destructive and persistant ways. Well Benji is fighting, literally for his life, due to a fungal infection in his blood stream. One of the things that Christian parents, like Penny and myself, are often comforted and touched by, is when people we do not know, but share our beliefs, pray for our children, even though they don't 'know' us. So, friends, I ask you to pray for sweet little Benji,. his mom Penny and sister Dana. If you can, leave them a little note on Benji's guestbook, and let them know that you are praying and that you are a friend of Andrew's. I know how comforting it is when you can do nothing but sit and wait and trust in God to heal your child.

www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=benji

edited to add: if you can't access Benji's page as above try

www.caringbridge.com/visit/benji

Alison

Monday, August 11, 2008 0:44 AM CDT

A quick note to let everyone know that we are in Oregon with a line that is working wonderfully. I will fill in on the details when we return. Melissa had an amazing time at camp but is currently very sick with a cold and virus. Yesterday we visited friends over inland and had a good time visiting and catching up on 12 years! Today was a 'we aren't driving anywhere' day. The boys discovered the love skim boarding and we spend a good many hours at the beach in the afternoon and evening. Tonight we had a treat and a momma deer and her fawn crossed the beach right where we were walking.

Thank you for all the prayers and thoughts during the crisis right before we left. They obviously worked.

The house we are staying in is nothing short of lovely. We have really been blessed.

Wednesday, August 6, 2008 10:47 PM CDT

We are due to leave in the morning for Oregon. Today we seem to have basiclly lost Andrew's VAD access. The timing can not be worse. It was 92 degrees in Vernonia today so we can't go without an IV for the week. We are hanging around in the morning to try one more attempt at TPA, which is a clot busting drug. We tried yesterday with no improvement. If this doesn't help, we will have to start an IV line in his arm and PRAY it lasts a week. This has been so incredibly disheartening and frustrating. This line has been in for 16 months and it picks today to jam up........ I have nothing uplifting or encouraging to say tonight........I have had a very bad day........Please pray for the TPA to work and for IV access, of whatever type, to last while we are in the US.

Thursday, July 31, 2008 9:31 PM CDT

Another quick update and to ask for a few extra prayers.

Andrew's urine culture came back growing Serratia. This is the same bug that has grown in his line the past few times. Good news is that at this point it isn't in his line just his bladder. We stepped up his treatment tonight and started him on an IV antibiotic. We need to stop the bug from getting into his bloodstream. He also has had a strange rash on his body for a couple of days. Our nurse Tuesday night said it was petechiae. We need to get a CBC drawn tomorrow just to check his platelets etc. It is likely related to his infection but we need to check a few things. He had a bit of a low grade fever today so we drew blood cultures tonight just to be sure, although I don't think that is a problem.

Aaron was just at the clinic with Martin as he had a lump show up in the arm that he had the cast off of a week ago. It is close to his elbow and it is inside his arm. It grew from yesterday to today and is sore to touch. The lady they saw thought it was either an inflamation of the vein or a cyst in which case it will go away. We will give it a couple of days and seek another opinion if it doesn't go away.

To top off the past couple of days, Martin replaced the starter on the car last weekend............today the radiator went. All this 7 days before we leave for vacation......Please pray that everything that is up in the air right now is resolved. We are going on this vacation no matter what!!

Wednesday, July 30, 2008 7:47 PM CDT

Quick little update. Andrew has a UTI. His urine sample from last night looked awful and tested positive. We are quickly starting him on antibiotics so it is gone by next week when we leave. He also has a strange rash tonight called petechiae. It is over alot of his trunk and is very fine little broken blood vessels. If he still has it tomorrow we need to get a CBC to check his platelet levels. Melissa has had a bit of issues with blood sugar this week. She has been doing an intensive basketball clinic and it is causing a bit of havoc with her sugars but it is good to try and sort this out this week rather than next when she is away. When we return from Oregon we are home for a couple days and then we are heading to Whistler for a few days.

Sunday, July 27, 2008 11:58 PM CDT

I can barely believe that August is almost here. Where has the summer gone! Andrew is doing pretty well. He has had some very good days where we have been able to get him to the beach and out for walks and what not. Last night he even watched the fireworks in Vancouver (that smoke bothered him but he loved watching) We have been trying to make the most of his good days. He has been without a line infection for about 3 weeks which is great as it was only 2.5 between the last two so we feel better about this a bit anyway. So far so good. Melissa is doing a local basketball clinic here this week coming up and then goes to camp next weekend. A friend and I are taking 2 days to take her to camp and have some girl time in the process. Melissa is excited and a little nervous which is very understandable. A huge thank you to some special friends that sponsored Melissa's trip to this particular camp. You are wonderful and we love you! When we pick her up we are spending a week on the Oregon Coast which we can't wait for. It has been about 12 years since we were last there and we love that area. We are hopeful that we will meet up with some very special friends of ours from my bible school days 20 years ago!! It would be lovely to sit down and visit with this couple who are true Christian mentors in my life. We are taking a boatload of medications that Andrew may need including IV antibiotics etc so that we will be able to self treat for the week while we are there. Due to insurance issues we need to be able to care for Andrew or drive home. We are taking two cars. Financially that is going to be a bit harder but for space reasons and also, on the small chance that Andrew needed to come back to BC, we will have 2 vehicles. We hope to just use Martin's car to get to Oregon and then park it at the beach house and use the van for all our day trips. We have a busy week between now and Saturday when Melissa and I leave to drive down to her camp. We even have 3 childrens hosptial
appointments between now and then. I will update when I get back from dropping off Melissa if not before. Thanks for all you continued prayers.

Thursday, July 3, 2008 0:27 PM CDT

Today Andrew had an EEG. It is a test that looks at the brain waves etc. His last one was 3 years ago. You must be sleep deprived and sleep during the test for them to get the best results. So we had to keep him awake until midnight last night and wake him at 5am.........It has been a long day. We should have results of some type next week.

We haven't got results on the blood and stool tests done yesterday yet. However, the fact that we did not receive a phone call 24 hours after the cultures were drawn makes me cautiously optimistic that this round of bacteria (for the time being) is being killed by the antibiotics he is on.

Matthew was able to get his drain taken out today while we were at children's. He is now tube free. He is still very sore and moving slow but the teenage attitude has returned with a bang so he must be feeling better. His chest looks great. The change is really impressive and the incision is very good.

Aaron is getting bored. He can't swim he can't bike. That's what happens when you break your arm the first day of summer break. He goes to camp in about 10 days though so that will be a good break for him. Melissa and he went to see WallE at the theatre tonight.

Melissa is doing well. She is trying to do some babysitting and is enjoying her first couple of weeks of having a major slow down in activity for the past few years.

We are eagerly looking forward to a week on the Oregon Coast after we pick Melissa up from camp in August. We need a break............

Tuesday, July 1, 2008 10:57 PM CDT

Soome days the depth and magnitude of our lives with Andrew seems more overwhelming than others. Some days we can pretend to be a 'normal' family, other days, the immense 'abnormality' of the life we are leading is like a lightening bolt in the heart. Often times we don't look at the WHOLE picture as, it is then, that the overwhelming sense of 'oh my goodness' takes over. We try and take one infection, one medication, one appointment, one day, one hour, at a time. It is how we manage to keep on going. That and a Faith that there is a purpose. Somewhere in all that Andrew goes through, in all that we do, God has an undeniable purpose. We don't know what it is but we know it is there. Sometimes we fight to submit and give in to it but we do. A year or so ago I bought a wonderful devotional about loss. It is called the One Year Book of Hope by Nancy Guthrie. Nancy lost two children in infancy to a genetic disease. Her writing are amazing. She is honest, open and I feel like she is my friend. I am sharing the last devotion I read two nights ago. It is titled Wrestling With God's Plan:

"While Jesus was here on earth, he offered prayers and pleadings, with a loud cry and tears, to the one who could deliver him out of death. And God heard his prayers because of his reverence to God. So even though Jesus was God's son, he learned obedience from the things He suffered." Hebrews 5:7-8

"One of the hardest parts of trusting God with my own experience has been reckoning the fact that God had the power to make my children healthy, and yet he chose not to. How can I love him and believe he sorrows with me if he had the power to change it but chose not to?

It is hard to accept that our loving God has the power to eliminate suffering and yet chooses not to. It was Hebrews 5:7-8 that helped me in my wrestling with this. I have clung to these verses in thelowest days of grief. In it I see the fully human, fully God Jesus facing the Cross and crying out to His father,who has the power to make another way, enact another plan...... but chooses not to.

And I see his submission to that perfect plan of God, a plan that included suffering and death. It helps me to know that even as he submitted to it, Jesus wrestled with God's plan to redeem the world through his death on the cross. It helps because I, too, have wrestled with God's plan for my life even as I sought to submit to it.

Have you cried out to God in frustration, with questions about how he could have the power to heal and yet choose not to heal the one you love? Have you agonized in an effort to reconcile your understanding of a loving God with One who allowed the accident, atrocity, abuse?? I have. And we're not alone.
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We are currently doing 2 IV antibiotics for Andrew's positive blood cultures right now. Plus an oral antibiotic for a bacteria that is in his bladder. What is so incredibly disheartening about the positive cultures is that there was only about 2.5 weeks since we cleared the last infection. It is the same bacteria again too. We were able to make some changes a while ago that had the wonderful benefit of severely cutting down on these blood infections Andrew had been getting frequently about 18 months ago. For whatever reason, things have changed and the infections are coming back again. We have to try and figure out what, if anything, we can do to regain control of this again. Another issue that has crept back is bloody diarrhea. It started before the antibiotics. I wish it hadn't as then we could blame it on that, however, it began before we started them. He is having anywhere from 1-8 bloody diapers a day right now and we don't know why. Martin said tonight that he hasn't seen diapers like this since Andrew was a baby and supposedly had Crohn's disease. We will touch base about all of these issues with his doctor this week. He has been wonderful about organizing Andrew's antibiotics etc over his holiday weekend which we are so very grateful for. We will get down to the nitty gritty later in the week when he is back at work. Tomorrow we have to go and do pre and post Tobramycin levels at LMH in the afternoon. Then we have to keep Andrew up until midnight tomorrow night and then wake him at 5am on Thursday morning for an EEG appt. at 9am. (he has to be sleep deprived for the test) We will hopefully, be able to get Matthew in to his surgeon during the same visit so he can have his 'drain' removed from his chest.

Today we enjoyed a quiet Canada day. We did some housework, I did a bit of quilting, had a nap, and then went to a little potluck dinner at the townhouse complex where we live. Melissa and Martin just left to go and take photos of the fireworks (if they can get a view from somewhere).

Blessings to all,

Sunday, June 29, 2008 4:48 PM CDT

We are home! Matthew was discharged late this morning. He still has a surgical drain in that we will need to get removed this week. It needs to stay in until no more blood etc drains.

Andrew blood and urine cultures are both positive. It appears to be two different bugs. The blood cultures look like Serratia again. Which we only got rid of 3 weeks ago. The urine-well he had bladder surgery only 10 days ago so my guess would be that that may be the cause of that one. We are awaiting final id's and sensitivities tomorrow.

We are tired but glad to be home. We are also grateful that Martin is off until Wed., which, is a blessing.

Martin, Melissa and Aaron are over in North Vancouver celebrating Martin's mom's 80th birthday party with friends and family. I am home maning the pediatric ward here at home!

Saturday, June 28, 2008 5:31 PM CDT

A quick little update. Matthew's surgery went as planned on Thursday. He has been doing as was expected with no suprises. His epidural was removed this afternoon and they transitioned him to oral pain meds. His greatest relief will be when they remove the catheter!

We hit a bump in the road though. Andrew spiked a fever this morning and we are having to do his inital 24 hour crisis intervention/antibiotics. We are unsure if it is a UTI or positive blood cultures. We have already spoken to his pediatrician and have formulated a plan for the next 24 hours.

I am home until 8pm when our night nurse comes. Martin dropped Andrew's blood and urine cultures off at PAH and then headed in to spend the next several hours with Matthew. He will stay until I get there around 9pm tonight.

We are hopefully that, if Matthew continues to do well, that he may be released late in the day tomorrow. At this point, one of us (or a nurse) must be with Andrew due to the amount of IV meds being run.

Please pray for us.

Edited to add this:

http://ca.youtube.com/watch?v=RvDDc5RB6FQ

Watch this........grab your tissues....I have tears steaming down my face.....Our God can and He will....

Saturday, June 21, 2008 10:44 PM CDT

Oh boy...............

Last night Aaron had a fall at the bike park. Called and said it hurt but then went to a friends for dinner and a movie and went for a walk too. When he got home he said that it really hurt but I told him to have a bath and go to bed. I figured if he was running all over town it couldn't be that bad. This morning he went over to the community days and then went to walk around the demos etc at bike fest. He came home for a bit before going to a birthday party today and said it really hurts and look at my fingers.......all his fingers on his right hand and thumb were all about 1 1/2 times the size of the ones on his left hand.........long story short........I guess he figured that Andrew and Matthew having surgery in one week wasn't enough for this family.....he has a minor fracture of the distal radius. He basically cracked his arm about 3/4" up from the wrist. So he is sporting a lovely purple cast for 4 weeks and then he gets re xrayed. He seems to be doing ok though. Not it is casted it doesn't hurt. Mom and Dad feel very bad about not doing something sooner but we just didn't think he had done much to it initially. Oh well.........We will put Melissa in a padded room this week just in case she feels the need to make it 4 for 4 this week.............

Saturday, June 21, 2008 10:49 AM CDT

Thank you everyone for all your thoughts and prayers for Andrew's surgery. It went well and he even went into the OR about 30 minutes AHEAD of schedule!!! He woke in an amazing amount of pain and they gave him a boatload of pain medication in recovery. The surgeon said that he ended up removing a small piece of the bladder that kept protruding out of the vesicostomy then reattaching the bladder to the abdomen and closing down the actual opening a little bit so that it wasn't so large. I think, due to the fact that his nerves are different that ours, that the local freezing took a long time to kick in and wasn't working when he first work up. We transferred him out to LMH and he spent quite an uneventful night there. He required a couple of doses of IV pain medication overnight but overall we were pleased with his recovery. His doc walk into the room yesterday morning and Andrew said Hey It's Dr. W, Hi Dr. W. Give me a high 5!!! To which his doc said Andrew you are getting so strong, to which Andrew said. Ya, Feel my muscles!! It was a very cute interaction!! Anyhow, we had Mary our night nurse last night and tonight. She gave Andrew some IV pain meds around 4:30am as he was up and sore. Andrew is also on his IV steroids for the weekend so with that and regular tylenol etc. Mary had a busy night and we got to sleep. Sleep is a blessing! Andrew slept well at the hospital but I didn't! We are going to try and take Andrew for a little walk in his wheelchair later this morning over to the little 'village' area where we live as they are having a community days celebration today with entertainment, free food, storyreading etc. It might be a nice little break and distraction for him. We are hoping that he will be able to attend church in the morning. Hoping for a quiet and restful day today.

Blessings to all.

Wednesday, June 18, 2008 6:27 PM CDT

Andrew continues to have a good week and has been in school twice this week too!!

Tomorrow Andrew has surgery at 3pm. The timing is horrible as, anyone who has been around a hospital alot knows, if you are scheduled for 3pm, inevitably things will be late and you might get into the OR by 4pm if you are lucky!! I'll be glad to just get it done. He should be home on Friday if everything goes as planned. Everyone can pray that 1) he doesn't get bumped out of his OR slot 2) Everything goes well with the surgery 3) We are able to contol his pain well over the first night.

Thanks everyone. We will update tomorrow of Friday.

Tuesday, June 17, 2008 11:10 AM CDT

Andrew is back at school today for the first time in 2 weeks. Nice for me and nice for him! Problem is, the big kids are home from high school now so no more quiet days alone!

On Saturday we had the most Amazing time at the Variety Clubs Boat for Hope. You can see a slide show we made at the bottom in the links section.

It was a fabulous day.

Yesterday both Matt and Andrew had preadmission clinic appts for their upcoming surgeries. Everything seems to be going as planned. We just need the final seal of approval from Andrew's ICU doc to move Andrew to our local hospital after the surgery on Thursday. Hopefully he won't have an issue with it. We don't have a time for Andrew's yet but we know Matthews will be at 7:45am. He was thrilled to hear that we have to be at Children's at 6:30am that morning.

Andrew has one more day left of hippotherapy (horse back therapy) for this set of sessions. He will go again in Sept. The new photo at the top is Andrew with TIA, his horse. She is such a sweet girl. He loves riding! It is so nice that he has something that is just his to do! It makes the expense, the time commitment etc. all worth it to see the smile on his face!

Friday, June 13, 2008 12:29 AM CDT

Isn't it hard to believe that school is winding down and summer is basicallally here...........in dates if not weather.

Andrew is doing much much better. The antibiotics all finish tonight and then we pray that the bugs don't come back. We have no reason to believe they will so we move forward. It has been a long two weeks that is for sure. The med regime was a tiring one this time. On Thursday Andrew is scheduled for his vesicostomy revision surgery. This will be a positive thing for him I think. He will spend a night out at our pediatricians hospital, we got Children's to agree to that, as they know him so much better and even his pediatrician agrees that they probably know better how to manage Andrew and his pain than Children's does. So hopefully just a one night stay. Matthew saw his surgeon today and he signed his own consent forms. It is a different place to be at when your kids are old enough, in the medical systems eyes, to sign for themselves. His surgery is scheduled for the 26th. He should be in about 4 days apparently. On Monday both boys have a preadmission clinic appt at the same time, which is helpful for time efficiency.

Tomorrow, our family is going on the Variety Club's Boat for Hope. It is a whole bunch of Yachts owners etc that take special kids on boat rides and they fight of ships full of pirates and try to find the hidden treasure at the different places they stop. AFter there is a lot of entertainment and a barbeque etc. We haven't been in past years but know that this will be a very fun day for Andrew. The other kids are even coming along quite willingly!

On Tuesday we have Martins office picnic at the zoo. Andrew loves trains right now so I think he will have alot of fun riding the mini train around the zoo!!

Well, I am off to play in my quilting room for a little bit until the washing machine repair man comes!! Our friend Sherry is downstairs playing a roaring game of pretend!! He is in his glory!!

Blessings to all,

Wednesday, June 11, 2008 0:38 AM CDT

Some good news. Andrew's last set of cultures, taken yesterday morning, are now negative. This means that the two IV antibiotics are now being effective. The bad news was, the hospital pharmacy phoned at 7am this morning, his Tobramyacin levels were too high so they had to reduce the dose by 25 percent. He will continue on both IV meds until Friday night at this point. Andrew has an appointment with our pediatrician tomorrow.

Melissa has been unwell since yesterday and came home from school sick today. I am really hoping and praying things are better for her in the morning. If not, I will be taking her to the doctor along with Andrew tomorrow.

Monday, June 9, 2008 6:45 PM CDT

Andrew is continuing to show signs of improvement on the regime of 2 IV antibiotics. We went out to LMH this morning to draw pre and postlevels of one of the antibiotics (they do this to make sure the dose is correct) and also to do kidney function bloodwork and cultures. (Kidney function is all good-they do this due to one of the antibiotics also) Cultures will give us a 24 hour tomorrow, however, I am cautiously optimistic that the cocktail is now working. I won't breathe easy until we get a minimum 24 hours no growth on the cultures. Now we are in a bit of a holding pattern until Friday night when the meds end. We won't really, really know if the bug is gone/gone until several days after the antibiotics are stopped. Andrew is starting to get a bit restless with being couped up. After blood work this morning, we went by the Therapeutic riding center as it was his normal morning to ride. He was able to still ride for about 20 minutes was probably a good amount for him as this was his first outing.

Yesterday we did the Walk to Cure Diabetes. Well, Melissa, Aaron, Val (Melissa's best friend) and myself did. Martin stayed home with Andrew. It went really well. I will let Melissa send out an email update later to those who get our emails as I don't want to steal her thunder!

This Saturday we are going on the Variety Boat for Hope which should be great.

The big news of our week is that we fought the union that staffs Andrew's SEA at school (his 1:1 aide) and we won. For some silly reasons that I don't feel like typing all out they were saying that Andrew's back up aide this year, who has been his primary aide in the past, could not be his primary SEA next year (his current helper is leaving). They were telling us, due to union rules, the job needed to be posted. This rule, takes nothing of the child's needs into consideration whatsoever. So, we fought, with the help of our nursing support coordinator, someone from the schoolboard and our pediatricians support and, we found out today,l that we WON!! Our next step was to go to the MLA's office, which we were completely prepared to do, but we are relieved we won't have to!

Friday, June 6, 2008 12:03 AM CDT

Well, good news and bad news. The blood cultures from yesterday are still positive. This means the Meropenum is suppressing the bugs from making him really, really sick, like initially, but they are not killing them. So today we add Tobramyacin into the mix. The good news is he is doing a fair bit better even though he is no where near his baseline. The other bad news is that it looks like he willl not be in school for another week and we are unsure at this point, whether we are going to need to postpone his vesicostomy revision surgery on the 19th. Everything is up in the air right now. The schedule of running two iv meds plus iv steroids plus other meds is very intense and allows little time for anything else. I must admit that, after 5 days of doing this, I am feeling a bit housebound tonight. Tomorrow, when Martin is home, I need to look for an excuse to go out for a few hours. On Sunday we have the Walk to Cure Diabetes. It looks like just one of us will take the kids as there is no way Andrew is going. We will move forward one day at a time. What we need prayers for the most is that this combination of meds will kill the bugs completely. We don't want to loos the line to this infection. Last time he had Serratia in his blood he was on IV antibiotics for 3 weeks before we finally killed it. We want everyone to pray for a quick resolution this time.

This afternoon Melissa and I are attending a funeral. We are very thankful that we were able to come up with a nurse to come for 4 hours so Martin doesn't have to come home early. However, our nursing hours for the next week are quite scarce so we will be on this very tight schedule for a while yet.

Please continue to pray.

Wednesday, June 4, 2008 6:03 PM CDT

Well his cultures grew Serratia,which is what we were all betting on. His Meropenum should be the right med but we may need to add another. We will do cultures again tomorrow to check on it. One great thing is that we are now almost set up to draw our cultures at home, when need be, and start treatment almost immediately. It mean we won't have to haul Andrew out to the ER in the middle of the night, when he spikes a fever, just to draw blood. We will draw cultures, start antibiotics and drop off the cultures first thing in the morning. This will be huge for Andrew's comfort level during an illness like this week. He is doing a bit better today. Starting to object to what is on tv and want his computer, which are both good signs in a strange way. I added a couple pictures to the photo page that I took today. Gives you a bit of an idea as to the machine set up that Andrew relys on, daily but even more so when sick. He is using his oxygen this afernoon as his breathing is heavy and a bit labored and I am not sure why but the oxygen is helping a bit.

We were given some pretty good news today. Currently Andrew is approved for 16-24 hours of nursing at home a week. As his needs have grown since he was first approved 3 years ago, he was represented today to see if he qualifies for more. He is now granted 36 hours of in home nursing a week. That is if they can staff it, which is basically never! Without us even asking he is approved for 35 hours of one to one nurse in school also. This is not activated but they took an almost unprecendented move of approving the hours and letting us activate them upon our discretion. So, if and when the time comes, we can quickly and swiftly put a nurse into place with him full time at school.

I'll update tomorrow unless things change.

Tuesday, June 3, 2008 11:33 AM CDT

We got some sleep last night........ I need another 8 hours but we slept. We were able to plan Andrew's meds for right up to when we went to sleep and first thing when the alarm went off. He was stable and sleeping overnight so we got sleep also.

I have already heard this morning that his blood cultures have grown out a coliform at the 12 hour mark. That is very fast for cultures to grow. We are now awaiting ID and sensitivities and will go from there. He is on an IV Antibiotic that is usually pretty good for coliform so we will pray that we have begun with the right meds.

He is, of course, at home and resting on my bed watching some TV. Melissa has a pediatrician appt today that she really needs to go to so Martin is having to leave work early to come and be with Andrew so I can take her. We have no nurses scheduled until Friday. We were very thankful to have one yesterday though.

Melissa and I spent a bit at the shower last night that we wanted to attend. It is neat seeing these 'little' girls, that you have seen grow up, become lovely young women and move into married life. It was also like old times as the group there were primarily from our church as it used to be. It was wonderful to see ladies that I haven't seen in several years.

Ok, off to do laundry, figure out what to put in the slow cooker for dinner and to, hopefully, take a nap when Andrew does.

Blessings to all,

Monday, June 2, 2008 6:08 PM CDT

Hi everyone, Just a quick update. We had a good weekend. Saturday I was able to visit a quilt show in the morning with my friend Cheryl. Then Martin took Melissa to her second BC Games tryout for Basketball. She was the last person cut from the team. Pretty impressive even if she didn't quite make it. Martin said the competition, as it was from a huge area of the lower mainland, was very tight. Then yesterday, we went to church in the morning and dropped Andrew off at a relatives so we could take Matthew and Melissa hiking (and Kody) Aaron was in Kelowna with a friend for the weekend. We went to Mt. Sumas and hiked for 6 hours. It was fabulous. We got home about 8:30 and it was time for everyone to shower and fall into bed. We were very tired!! ....I don't know if that says much for how in or out of shape we are.

At Midnight Martin woke me to tell me that Andrew didn't look good and was burning up. I went in and quickly summised that he had a very fast rising fever. We gave valium, steroids, tylenol and motrin to try and bring it down. By about 2:30 it had come down a bit at 4am we redid the meds again. I paged his doc very early this morning and we made plans to draw blood cultures etc. For the first time ever, we were able to draw them at home and I just took them to the lab. We were fortunate to have a nurse scheduled today from 8-3pm so that was a huge help. We let his tylenol and motrin wear off first thing this morning to see if the fever would return and sure enough it rose very fast again in the late morning. Now we are keeping him on round the clock tylenol, motrin, steroids, valium and and IV antibiotic until his blood cultures come back tomorrow. We ended up getting very little broken sleep last night (and boy, after hiking all day that wasn't what we needed!) Today, even with a nurse, his care needs were very heavy. He is comfortable and quiet right now, hooked up to all his machines and watching Curious George Movies on his computer. He looks better with all the medications working so we won't let them wear off again for the next day. I have a social event tonight that I don't want to miss so will probably go for just a little (It's a shower Melissa and I want to attend)

Please pray that the bug is easily identified, that the antibiotics are correct, that we keep him comfortable and that he recovers from this illness quickly.

Daisy, if you read this, we won't even be considering school until at least Thursday or Friday.

Tuesday, May 20, 2008 11:07 PM CDT

Today is a very special day. Today I have been married to my best friend for 19 years. I was 17 years old when we began dating, 20 when we got married and 23 when I had my first child. 19 years and we have 4 beautiful, amazing and god-loving children. We have faced hurdles that no one could have ever imagined. When we said our vows 19 years ago, for better and for worse, did we truly comprehend what 'worse' really was?? Now we can. The statistic state that near 90f marriages which involve special medical or developmental needs in children end in divorce. Pile on to that the fact that we married young....... I would say we have beated the odds. Of course, we have a strong love for each other and for God and that is the strong rock that keeps us grounded. I could never have imagined 19 years ago that I would be where I am now, however, I could also not have imagined that God could have found the most perfect, wonderful, gracious and loving person to walk this road with me.

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Andrew has been fighting a UTI for the better part of a week now. He is on IV antibiotics and is doing better but still having some ups and downs. Overall-ok.

Melissa is working through her first full week on her insulin pump. It has been an exhausting and draining week as we need to get up to test her blood sugars at midnight and 3 am every night until further notice. Which we are hoping is only a few more days. She is doing very well with it though and it is giving her freedoms she only dreamed of a few short weeks ago. She had a cinnamon bun and an orange julius last weekend!! She was thrilled!! She is still playing hard at U14 basketball and is going to the BC Games tryouts in about a week. If she were to qualify they are in Kelowna at the end of July. She began her swim season this week but, after a lengthy discussion this evening, we (along with her) have decided that that is not going to be the best decision for her this year. So she will be swimming on a recreational basis this year instead.

We had a lot of fun enjoying the good weather this past weekend and are hoping for more........after that freak thunderstorm this morning.

Good night all!

Thursday, May 1, 2008 1:49 PM CDT

I wanted to pop in and say, yes, we are home!!! I will give a much more detailed update tonight or on the weekend. We had an absolutely amazing time. Unfortunately, the day we left, Matthew came down with a horrible, horrible cold and I spent one evening in Anaheim running around trying to get him medicine etc. but he still had a great time. We have not seen Aaron happier than he is now. (Even with the fact that on Tuesday he fell during PE and may have cracked his wrist. 2 hours in the ER and a cast later we were home) With Aaron's 'cracked' arm and my broken tooth (yes, I broke a molar while we were away and had an urgent dentist appt. on Monday to start fixing it) we have had an eventful week. We came in around 1:15am on Monday and Monday afternoon I had the dentist, Monday afternoon Melissa had U14 basketball tryouts and Tuesday Aaron 'cracked' his arm!!! Today is the first real quiet day I have had and I am going through all the boxes Martin packed up when they did the bedroom this weekend. WHich looks SO GOOD!!!! I love it. Thanks to those who helped, you know who you are!! We have to put baseboards in this weekend and need to purchase a few things like lamps (right now we are sitting in the dark in there) but it looks so nice. I can't believe how good the floor looks.

Anyway, I will share many many photos and a proper trip report later. Back to my boxes!!

Oh..........just popping back in to add that Melissa made the U14 rep team and has a tournament this weekend. Considering all the other girls tryed out over Saturday, Sunday and Monday and Melissa was only able to make 1 hour on Monday I would say she must have made a great impression!!

Also, her insulin pump arrived yesterday. She is very excited and she starts pumping this week (saline (water) for one week for her to practice and then on the 13th she starts pumping insulin!!!

Saturday, April 19, 2008 7:15 PM CDT

Well time sure flys when you are busy trying to get half of your family ready to away on different flights from different cities!!! (Matthew leaves from Vancouver and we, needing a more budget friendly flight, are leaving from Seattle!) Getting a 15 year old to stop his social life long enough to make sure that he has enough pairs of shorts etc that still fit him to take is like torture to him. Melissa is off on a retreat with the Junior High from Church this weekend and won't be home until tomorrow afternoon. Aaron is starting to get very excited although freely admits he is a bit nervous about flying! Me, I'm just busy planning and making sure those here and away are taken care of. Today we went out and got laminate flooring for the master bedroom as that is one of the projects that Martin is taking care of while we are gone. That and painting etc. Remember everyone out there who has a spare hour or two or three, Martin would love some help between Thursday night and Saturday night, just give him a call or email and he will let you know for sure that he will be here. Thanks to those who have said they will come. You have no idea how much we appreciate any help we can get. The timing is right with a 3/4 empty house to get these things done so we are jumping on the opportunity.

Now for the best news of the week.......................

Melissa's insulin pump was approved by the Variety Club. They are picking up everything that the insurance would not. So insurance pays $1000 and Variety is picking up $6000. Now we just need to get that in writing to the pump company and everything can move forward. We are hoping to have a solid confirmation from Animas that the pump will be on the way before we leave Wed. but that might be a little over optimistic but, hey, I usually am optimisitic right!! Melissa is, of course, very excited and desperately trying to decide whether she wants a blue pump or a pink one. She has to decide by Monday!!

Andrew is doing ok. He is on a different IV antibiotic and we are really hoping the VAD redness will go away, however, we will try and just deal with it and the meds until I get back and then go see specialists etc after next weekend if we need to .

A good weekend to all. It is supposed to be in the high 70's - mid 80's in Los Angeles next weekend. Makes the very cold, windy weather a tad bit easier to tolerate!!!

Wednesday, April 16, 2008 6:38 PM CDT

So our home is a buzz with little (well, not so little) fingers typing away at the keyboard doing internet searches on the best rides to go at Disney etc. Melissa and Aaron are loving the lead up and Matthew is busy getting ready to go with the band. As I mentioned in the previous update, we have so much going on right now. I guess I will update everyone now.

One thing I didn't mention last time is that Andrew made it to the top of the wait list for therapeutic riding. He started a week ago Monday and is enjoying riding Midnight each Monday morning. He rides for about 45 minutes and this set of sessions goes until the end of June. Then in Sept. he will be able to start again. He also finally got his laptop computer for his school work and home. It comes through a program called SETBC, and they provide technology for special needs kids if they meet the criteria. It took quite a bit of fighting to get one as they kept denying him as they said he was too disabled basically. However, they finally said yes and Andrew really loves his computer. Especially playing games on it!!

Now for the medical updates:

Andrew was awaiting a date to revise his vesicostomy. This is a surgery and we were waiting a date from the urologist. Andrew was on the cancellation list. Well the date they offered is April 28th which is approx 8 hours after the kids and I return from Disney. Needless to say I told them that that really wasn't a good plan. It is now scheduled for June 19th. We are still on the cancellation list as we would like to see that date moved up if possible. You see Matthew is having pretty major surgery on June 26th (exactly 7 days later) at Children's also. Matthew's surgery is a bigger surgery, in that it is 3 1/2 hours long and requires a 5 day inpatient stay. This is going to be a very difficult and stressful time for all of us as we try and cope with both boys needing surgery within 7 days of each other. Melissa is getting her insulin pump (if all goes as planned) on May 7th. The month of May will be an adjustment time for her, and us, as we learn to use the new technology and how to manage it all. Yesterday I met with Andrew's OT to get some power chair adjustments made and also to have him try a specialized bike. After watching him play for a while and talking with me, she feels Andrew needs to have a formal assessment done in terms of some of his behaviours, obsessiveness etc. We have known that these behaviours were becoming a bigger issue for Andrew. He has a very hard time doing anything by himself these days. He lines cars up, moves them from one box to another, but he doesn't play. He needs one to one guidance to play and focus at home. We are at a bit of a loss as to what tools to use to help him and how to handle his obsessiveness etc. We are going to meet with the Psychologist etc to try and get some tips for this. As Andrew's disease is progressive the assumption is that this type of behaviour could very well get worse, therefore, we need to know the best way to parent him during these changes. Also, his VAD skin infection, even after 3 weeks of IV meds every 6 hours, has not cleared away totally. We have just switched him to a different IV med for a week and then, if there is no change, we will have to consult infectious diseases to get their opinion. I have told/asked his pediatrician to buy time until the kids and I get back from California as I don't want Martin to have to deal with this, and I don't want to worry about him, while I am away. I am hoping the new med will work and this will all be a non issue. As long as the skin infection doesn't cause him illness during the interm, we are fine. What we don't want is it to cause him to be sick at any point. Thus the reason we are being very cautious about the whole situation.

I have to say there are not many times that I feel overwhelmed with everything that we need to deal with. I tend to approach it with as positive an attitude as I can and just do what needs to be done. However, I have to humbly admit, that as I look ahead to the next two months I am overwhelmed with all that we need to do that is medical. This is all on top of the day to day needs that Andrew needs met on an ongoing basis. I guess the best thing you can do for us is to pray that we have strength and can persevere through all this. The timing is such that it is all just coming to be at the same time. The timing is very good in someways as everything will be done by the beginning of the summer. Matthew's recovery will be several months long, thus the reason it is planned for the very end of the school year.

If I don't update before, we leave on Wed. night and return on Sunday night, Only 7 more sleeps!!!

If you are hoping to help Martin while we are gone. A big thank you!!

Saturday, April 12, 2008 9:25 PM CDT

Well the big secret is out!!! Melissa and Aaron now know that I am taking them to Disneyland on the 23rd!!! Mattehw's school band is going to be there those dates so we thought back in October, if there was some way we could do it, we would love to give all three of the kids a chance to be spoiled just a bit. We originally weren't going to tell them until the night before we were leaving. We decided, based on the fact that Melissa was booking babysitting jobs for that weekend. and has projects due etc, that we should give them a bit of notice, plus Melissa loves to plan, make lists, check them twice etc. Last night, Aaron had his first basketball game and we took Aaron and Melissa out for ice cream after. I had made them travel bags and put some 'keep busy' stuff in it for the trip. I had typed out an itinerary (which I would show you a picture of if this wasn't the WWW and any one, anywhere, could know where we are) They started to read the note and Melissa clued in sooner than Aaron, Aaron thought we were playing a joke on him!!! To say they are over the moon isn't an exageration. The top photo shows the full impact. On the photo page you will see step by step realization!!!! I am so happy to be able to do this for them. My only heartache is that Martin and Andrew can't come too............. I know it is better this way. Melissa and Aaron get full attention and we don't need to worry about stressing Andrew by pushing him over too short a period of time. Anyone who would love to know all the details can just ask us now!!!! 11 more sleeps until we visit the MOUSE!!

PS We have a whole bunch of medical to update but lets leave this a fun and uplifting update for today. I'll do the other in a day or two!

Thursday, April 3, 2008 0:15 AM CDT

A few weeks ago when Martin and I were heading out of town for 48 hours away, I was driving down the back way to the Lynden border crossing. You know the way. Well, as I rounded a corner and headed down this nice straight road what should interupt me but a nice man with a hat and a yellow stripe down his leg. Of course, the moment I saw him I thought, Oops. He came to my window and asked me if I knew why he had pulled me over, I told him I thought I could make a pretty good guess. He told me I was doing 69 in a 50. He was right.

On my way home from our home group tonight, I was thinking about time. Part of our home group discussion was about how we spend our time and where our priorities are. As I drove home I thought about my speeding ticket, and I thought, you know what, I am always going 69 in a 50 (figuratively speaking-not in the car). My life moves at a pace that, if I went 50 I would be still working on last Sunday in things that I need to do each day. This week has been exceptionally busy with kids special needs and their very normal needs plus the normal running a house needs. Realistically, when talking about my day to day life (not my driving) I have no choice but to go at the pace I go, to not, would be to be swallowed up by my circumstances. I believe that the strength to keep going at the pace I need to go is something that God must be providing me on a day to day basis because, by all means, I should have run out of energy about 7 years ago. I know many people pray for our strength. I guess, when I look at this way, those prayers are being answered on a daily basis. So please keep praying for our strength and endurance. One thing I need to do is to take advantage of those few hours (not days) where I see the opporunity to slow down to the speed limit for those few moments that I can. Aaron had a tooth pulled today (actually two but that's another story) I was busy getting him comfortable when Andrew came home from school and Melissa came in. The dog hadn't been walked so I suggested Melissa take the dog and Andrew and walk around the corner to a little park a 1/2 a block from here. They did and she took our camera and Andrew took Melissa's camera to take pictures. 45 minutes later they strolled back in. Andrew had picked me a dandylion bouquet (which is proudly displayed in my living room now) and between them, they had taken 260 pictures of the things they saw on the 1 block walk to and aruond the park. Flowers, sand, swings, the dog, Melissa's behind (Andrew has a sense of humor). Melissa's photos were beautiful, perfect flower buds etc. Andrew's was his feet, the slide tipping sideways, the back end of the dog but you kno what they both did for 45 minutes. The slowed down, looked around and 'smelled the roses'. They came home and I found myself a little jealous and thought, I need to that more myself..............

Saturday, March 29, 2008 11:10 PM CDT

Time passes so fast these days... I don't mean to not update over long periods of time but I am always amazed when I sit down to update and weeks have gone by.

Happy Anniversary to Mum and Dad (Grandma and Grandpa) 44 years and counting......Congratulations!!

The kids are just winding up spring break. It has been a long two weeks in some ways. The first week went by quickly as Martin took some time off and we did a few things as a family. This week, the two younger boys were back at school but the two older ones were still home, they go back on Monday.

Melissa has been involved in a special regional training center for basketball. She was invited to attend by one of the fellows in charge of it. It is by invitation only and is for the girls in the Lower Mainland that show the most promise in basketball. All the girls invited to attend have the potential to continue to post secondary or further. She has had HUGE issues with blood sugars this week. Without going into huge detail, her insulin requirements suddenly were half of what they were last week. Which is good except you dose as always and then she is LOW and you are scrambling to get it back up. Her sugars are now returning to where they were and her insulin requirements are now increasing to their normal baselines again. Chasing them all week has been a challenge. She has started marketing herself as a babysitter after taking her babysitting class at last. She has had several phonecalls and two little babysitting jobs this weekend alone. So if anyone reading who is around here needs a fabulous babysitter give us a call!! The big thing in her life this week is that we have made the decision to get her an insulin pump. We had a pump rep here on Friday morning and we have made the decision on the pump that is best for her needs. The cost is $7000-the price of a used car. We are able to retrieve some from insurance and are approaching Variety Club for help with the remainder. If Variety says no, we will still get it for her somehow as this will be SO MUCH better for her. With her active lifestyle this is, by far, the healthiest and most sensible option for her health and well being.

Matthew is gearing up for his band trip to Disneyland in 3 weeks. I think he is excited about going and keeps rubbing it in his siblings faces that he is going!! Brotherly love!! He is also making a brave step and is going to coach Aaron's spring league basketball team for the next 8 weeks. Martin will be the parent sponsor but Matthew will coach 11 - 12 year olds!!! I hope he survives!! He spent three days this past week working at Focus with Martin and did very well so he is now convinced that he wants a 'real' job instead of his paper route.

Aaron is starting YMCA basketball next week (with his brother as the coach) for the next few weeks. He loves basketball (where did all the kids get that from??) and is looking forward to playing. He is doing well in school this term and is aceing MATH! Anyone that knows me knows that Math is my weakest subject so he must have got that from his Dad. He enjoys his social life and he is really enoying mountain biking with his friends. He is saving to buy a mountain bike right now.

Now Andrew. Well, I am tired from writing everyone else's updates but I'll do his.......

Where to start. One of the things that we are really struggling with with Andrew is some of his behaviours. Now, don't read that he is a behavioural problem cause he is not. We are having difficulty with managing and living with some of the behavioural tendencies that come with his disease. In everything we need to remember that Andrew's brain does not work the same as a normal persons. We can't expect that Andrew will see the world the same as us or will understand and act in the same way that we would expect. Sometimes, the reality of that is very hard to accept. Andrew in many ways lives very much in his own little world. He is so incredibly social, loves people, loves attention and being the center of it etc. However, when it comes to playing and interaction with others he REALLY struggles. Playing with children his age is near impossible without an intercessor to help him. He loves to play with other children, however, they don't know how to play with him and, honestly, he doesn't really know how to play with them. Andrew spends hours a day playing with his collection. His collection is boxes and bags of stuff. Stuff meaning old cell phone manuals, broken remote controls, toy cars etc etc. He moves his collection from one holding device to another, be it a drawer or a bag or laundry bin. This seems to make him happy. As parents it is very hard to watch him doing his own thing and it is difficult to relate. I have purposely sat down and played with his collection with him. Lining it up, putting it in a bag, sorting by color. It is hard to do but it makes HIM happy and above all I want him to be happy. I doesn't matter if we don't understand, if we don't get it. As long as it isn't harmful then if it makes him happy that is key. In saying that, we find it very hard in managing and coping with these behaviours sometimes. When you are trying to get him out the door to school in the morning and he is trying to pack up 30lbs of 'stuff' to take with him it is hard not to get a wee bit frustrated. You can pray that we learn how to be good parents to him in this. We have been discussing these issues with his primary physician and he is trying to give us advice as he knows best. Ultimately, when dealing with a disease of a degenerative nature these are things that we will need to grow accumstomed to. Please pray that we have patience andunderstanding.

Now, the medical. I think last time I wrote that Andrew had a skin infection at his VAD site (that is his implanted IV site) It was gone at the end of his IV antibiotic course of 2 weeks and 7 days after it went away, it came back. So we are now dealing with it again. It, in itself, is not making him sick, but it can't stay infected above the site as it could make him sick. So he is back on IV antibiotics and may be for up to 3 weeks this time. Seeing as it is every 6 hours it is going to be trying the next 3 weeks.

He went back to school on Wed. and had a good day. On Thursday, I got a call that he was doing poorly and the aides were fairly certain that he may have had a prolonged abscence seizure. I got there when he was still very dazed and not looking well. Just prior to this he was having issues with very low blood sugars (2.4) but they seemed to be improving. Now we really don't know. A blood sugar done about 10 minutes post seizure was 5. According to his pediatrician, postictal blood sugars are usualy high (meaning 9-11) For him to be only 5 may mean that he dropped his sugars very low when we thought he was coming up and the sudden drop to low numbers may have brought on the possible seizure. We will never know for sure. Next time, even though it is hard to think of in the stress of the moment, we will have to get his helpers at school to draw a blood sugar at the time of the 'seizure' and see what it is . He was definatley still out of sorts all day Thursday and into Friday so he wasn't at school. MOnday is his regular day with his nurse so he will try going back to school on Tuesday. His nursing support coordinator has been encouraging us for a while to change his designation to have one to one nursing at school as well as at home. We have been resisting out of a want to keep his life as normal (ya I know, right) as possible for as long as possible. With some of the recent events we may have to rethink that..........Not tonight though.

Tonight I am going to go in right now and kiss the little boy goodnight that is calling me from across the hall and saying ' you didn't give me hug and kiss' and I am going to hold him tight for a few minutes and tell him I love him. And I do love him. Just the way he is. Unconditionally. Without boundaries. He is MY SON.

PS Can I recommend a faulous novel. It is called The Shack by William P. Young. It is a novel but it is an amazing book with amazing reviews. I won't spoil it. It is about a man who must go back and meet God at the place of his deepest heartache and pain. It is different, it is eye opening, it moves you to tears and it speaks to your heart. Read it friends with an open mind.

Sunday, March 9, 2008 11:00 PM CDT

We had the priveledge of celebrating our sweet Aaron's 12th birthday yesterday. We had a nice day. He spent part of the day at another child's birthday party but they went go carting for 2 hours which he really enjoyed so he says it was a great way to spend his birthday. He wanted to go to Ocean Park Pizza for dinner, which we did, and he had a great time going to the 'pub' and watching the hockey game while having dinner and a pitcher of COKE! He is really a delightful boy and we are so very lucky that he is our son.

On Friday this week, myself and Melissa and Aaron are going to go down to Seattle overnight to meet a special family. We have been following Brody's care page for a long time and they are flying in to Seattle to talk with the transplant doctors out West to see if they can also list Brody for the transplant he requires. We are going to meet up with them on Friday before they head back home. Please keep Kristi, Brody and family in your prayers as they have quite the busy schedule for the next few days, pray Brody stays 'well' duting all the visits.

Andrew has been on IV cloxacillan for almost 7 days. His VAD site is finally looking a little bit better. I think we may end up extending the antibiotics for a few days as I really don't want to stop too soon seeing as this redness seems to keep coming back. The good thing is that he is doing fine. Quite perky in fact!! We did get some news in terms of his blood sugars this past week. Dr. M,Andrew's endocrinologist wanted us to try and draw blood during a low blood sugar episode to test his natural insulin levels. In a normal person, the levels should be non existent or less than 3. Andrew's levels were 94. Too high. He also had another high blood sugar this week. 12.9. The endocrinologist assumes that, during that episode, he didn't make enough insulin. So he is definately having issues with regulating his blood sugars due to either his overall disease process or, possibly, as a side effect to one of his meds. Either way, if the lows, which are more frequent and more dangerous than the highs, become more frequent and more problemative there are insulin suppresing drugs that can be used. Now what are the chances. I have one child who doesn't make insulin anymore and one that makes too much. Melissa suggest they 'mush' the two kids together and they would both have perfect blood sugars!! Good idea!! We also saw Andrew's urologist this week and Andrew needs to have a revision of his vesicostomy. Over time it prolapses more and this causes pain and bleeding of his bladder. It isn't pleasant or nice for him at all. It will be an overnight at Children's and we are on the cancellation list as he is booking surgerys into next year. This surgery was booked to be done last September but do to some other things we were dealing with within the family we had to cancel it. In order to try and streamline things for us he thinks the cancellation list will be the quickest way to service Andrew. We appreciate his thoughtfulness. However, it also means we may have to go on short notice.

We also want to share with you that Matthew will be having surgery in June (hopefully). He is healthy and happy and this is nothing that he is sick from, however, my happy, healthy nearly 16 year old needs a chest reconstruction due to a bone growth issue. It is actually a bigger surgery than we anticipated. He will be inpatient at Childrens for 5 days. We pray the timing works out the way he is hoping and that his surgery and recovery goes without any issues whatsoever. Matthew has never 'needed' us for anything medical etc. We really feel that we need to support him in his decision to have this done at this point in his teen years. Apparently this is the best age to do it.

The dog, Kody, is happy, healthy, perfect and has NO medical issues of any type!!!! :P

Sunday, March 2, 2008 9:11 PM CST

Another couple of weeks have gone by since my last update. Time is flying. Does that mean I'm getting old?? I feel like a broken record telling you how busy we have been. I think that perspective is everything. We have the 3 very active kids with all they do and last weekend Melissa had Fraser Valley's which meant driving to Maple Ridge and back basically 3 days in a row. She had a great basketball year and is going to some regional training camps coming up. She is very excited about her basketball camp in Oregon this summer. She was given a very special gift today from friends and, if you are reading, thank you a hundred times over!!

Matthew had to go to Idaho for a jazz festival. He went Thursday and returned Sunday night. Then this weekend he was at a youth retreat with church.

Aaron had 3 birthday parties and a basketball play day. His social life is flourishing (almost too much!) but he is having a whole lot of fun in the process!

For many, the schedule with the three kids alone is busy.
However, what many don't realize is that, even when Andrew is well, he is 24 hour care. He is on about 12 different medications a day, these are spread over about 8 different times a day. Then when he is unwell there are more. His feeding pump runs 24/7 and needs to be seen to when it beeps or fusses and needs to be topped up. His VAD is accessed once a week and that access is left in. That is done under sterile conditions and we put a needle into a port in his chest and cover it with dressings. He is on IV fluids from about 4pm until 8am every day that he goes to school and 24 hours a day (basically) when he is home or ill. Hooking him up or unhooking him from his IV takes about 10 minutes and needs to be done under sterile conditions. His vesicostomy needs to be catheterized many evenings. He needs his oxygen saturation/heart rate monitor on every night overnight and also when he is ill. This alerts us to fluctuations in his heart rate or oxygen levels. It also alerts us if his toe is bent funny, the blankets are pulling on the cord, the plug comes out etc. So we much check out each alarm even if it is a false alarm. He is on bipap every night. This is a mask that fits very tightly over his nose and is strapped around his head much like a pilot in a fighter jet. It ensures that he takes a set number of breaths per minute and that those breaths are deep enough. When he is unwell we run up to 15 IV meds in a 24 hour period. Many which need to be drawn up and hung and then changed out for another one when that one is completed. His oxygen tanks only last about 4 hours when he is sick so they need to be watched to see when they need to be changed. We do have nursing care in our home. However, except when our dear Mary comes overnight, most of those shifts are 4 hours long. When you look at how much is done for Andrew in 24 hours - 4 hours is nothing, although we appreciate every bit of help we get. The type of care Andrew requires on a day to day basis would be considered 'heavy' care in a hospital when he is sick, he would be deemed one to one care in the hospital.

Taking Andrew to and from home involves loading the wheelchair in and out of the van, taking pumps with us and, occasionally oxygen, taking meds that need to be done in the time span we are gone and taking emergency supplies in case something bad happens with him while we are away from our home. When he is at school, sometimes things come up where I need to be at the school within minutes to help take care of something. Last week I had to rush over to draw blood from his line during a hypoglycemic event so we can get some insight into what is happening. It also involves taking diapers and wipes for an almost 10 year old boy and finding somewhere to change them if the need arises.

He often has several appointments in a week. This includes visits to Children's hospital which take a lot of time and energy.

I am not sharing all of this to generate sympathy. That has never been something I have wanted. I am simply wanting everyone to have a full perspective and understanding of what being Andrew's family entails. Some of you may only see him out and about when he is well and playful and spunky and you never have to opportunity to see what it takes to keep Andrew in that state. We would not trade Andrew for anything in the world. Our schedules do suffer. Unfortunately, we can't just take up and go out to dinner with friends at the last minute or make spur of the moment decisions to see a movie. If we did, who would do all the necessary things that must be done for Andrew. (We still like to get asked though-just in case!!) We do none of this grudgingly. We do all of this because we love our son more than life itself.

We had a bit of opportunity to realize just how much time and energy goes into Andrew when Martin and I got away for 2 nights this past week to Whidby Island. When you have 48 hours when you don't have to do it all (even though I had many phone calls for advice while we were gone from those caring for him and the others) It is then that you realize how all encompassing our lives our, and yet, I could not comprehend another life at this point in time. I don't grieve for a 'normal' life because I don't know what normal is. I sometimes feel jealous of friends that are beginning to experience freedoms that we may never have. However, I know that my life is richer and my more blessed, than if we had never had the gift of Andrew. Yes, sometimes I get tired, in fact, sometimes I really, really want a break from it all. However, I look at that sleeping face. Machines, IV's, feeding pumps, monitors and all, and know that I am a truly Blessed woman and God has given me a special gift that many will never have the experience of having.

A little note to end: Andrew has been fighting a bit of a skin infection at his VAD site for a couple of weeks now. We just stopped the IV antibiotics when we returned on Thursday night and it is dark red again. His doc has put him on an oral med and tomorrow we will switch to an IV form so that we can, hopefully, get rid of this once and for all. Pray that we pick the right med and that it works quickly and effectively.

Thursday, February 14, 2008 11:53 PM CST

Happy Valentines Day.

Andrew has not also got a urinary tract infection. We are starting an IV antibiotic and will reculture to make sure it is a true infection. It is the same bug that caused a lot of problems in his blood stream in Sept. so we are always agressive when it shows up. It has been a long couple of days caring for him as the medication regime is very busy right now.

Melissa's team didn't win tonight. That is only their 2nd loss in 12 games. Both losses to the same team. It was a frustrating game as the assistant coach was coaching tonight as the regular coach was away and he does things very differently.

They still did very well to get where they did and now they move on to the Fraser Valley tournament next week sometime.

Thursday, February 14, 2008 9:21 AM CST

Andrew is holding his own. We are giving him lots of meds to help him cope with the cold. His asthma meds are higher and more frequent and his IV steroid and valium doses are running so that his autonomic system copes reasonably well with this illness. He is of course home today so will miss the Valentine's Day festivities at school. I have to go to a meeting at the school this morning about Andrew's laptop that he will soon get through special ed. It is so he can do his work on computer from home or school. We are planning what type of programs to put on it.

Melissa's team won the game last night. This means tonight they battle it out with Panorama Ridge for the top grade 8 girls team in Surrey. The worst they can end up at is 2nd!! The top two grade 8 girls teams in Surrey go to the Fraser Valley's so that will be next. Tonights team will be very hard to beat but the girls needs to be very proud of their accomplishment!!

Wednesday, February 13, 2008 12:36 AM CST

I'm just going to do a quick little update. A bad cold/respiratory virus is going through our home. Melissa had it real bad this past weekend and ended up on lots of prescription meds for it. She is recouping now but day 5 and 6 were the worst for her. Andrew has come down with it now, today is day 1. He is coughing alot, very congested and, obviously, won't be at school this week. If it were to get as bad as Melissa was on the weekend he would likely end up hospitalized but we are several days away from that. Martin has it to a degree now also.

Melissa was feeling well enough to play some in her basketball game last night. Much to the relief of her coaches! They won their first official playoff game and tonight is another. They now have a fabulous record of 9-1.

Which is great!! Wish her luck at tonights game and pray for Andrew as he has this illness.

Thursday, January 24, 2008 9:18 PM CST

I don't have too much to update. There have been a few bumps with Andrew in a few areas this week, but it is really no different that what we deal with frequently. What has been difficult to maintain is the other kids sports schedules right now. The older two are busy preparing for finals/provincials etc. I couldn't resist updating the photo above though........You hear so many things that are 'wrong' with Andrew. What those who have never met him don't know is that he is hillarious. He is a ham who loves to make people laugh. He has SUCH an infectious laugh and it is hard not to find yourself giggling uncontrollably along with him. Today he decided he needed to wear his 'super spy' glasses to school. He has to wear his regular glasses also so he figured he would wear the super spy glasses on top. That worked well because they are much larger!! We arrived at school and he was motoring down the hallway in his power chair when Aaron's class walked by on their way to gym. Andrew high fived the whole class as they went by all the while giving the kids a good giggle at his special glasses. Andrew has been blessed with an incredible ability to make people smile, even when he was feeling pain (as he was today)!! It is a God given gift and we are so very thankful that God made him that way. Many people question the verse "For I am fearfully and wonderfully made......" when looking at a child like Andrew, who has so much 'wrong' with him. THIS is exactly what this verse means, and HE is WONDERFULLY MADE!!

Sunday, January 20, 2008 3:31 PM CST

I'll update on Monday. However, I just wanted to share this with you. It was on a little 'web-friend' Brody's care page. He is awaiting assesment for a transplant in Seattle. However, his Mom shared this verse that just spoke to my heart today. God meets us where we are at. Whether it be by people we know, things we hear or people we have never met. I hope that you can take this poem and apply to your own life and your own situation where, perhaps, you are tired of waiting.........I know I can.

"WAIT"
By Russell Kelfer

Desperately, helplessly, longingly, I cried;
Quietly, patiently, lovingly, God replied.
I pled and I wept for a clue to my fate…
and the Master so gently said, “Wait.”
“Wait? you say wait?” my indignant reply.
“Lord, I need answers, I need to know why!”
Is your hand shortened? Or have you not heard?
By faith I have asked, and I’m claiming your Word.
My future and all to which I relate, hangs in the balance and you tell me to Wait?”
I’m needing a ‘yes,’ a go-ahead sign.
Or even a ‘no,’ to which I’ll resign.
You promised, dear Lord, that if we believe,
We need but to ask, and we shall receive.
Lord, I’ve been asking, and this is my cry:
I’m weary of asking! I need a reply.
Then quietly, softly, I learned of my fate, as my Master replied again, “Wait.”
So I slumped in my chair, defeated and taut, and grumbled to God,
“So, I’m waiting…for what?”
He seemed then to kneel, and His eyes met with mine…and He tenderly said
“I could give you a sign. I could shake the heavens and darken the sun. I could raise the dead
and cause mountains to run.
I could give all you seek and pleased you would be. You’d have what you want, but you wouldn’t know Me.
You’d not know the depth of My love for each saint. You’d not know the power that I give to the faint.
You’d not learn to see through clouds of despair; you’d not learn to trust just by knowing I’m there.
You’d not know the joy of resting in Me when darkness and silence are all you can see.
You’d never experience the fullness of love when the peace of My spirit descends like a dove.
You would know that I give, and I save, for a start, But you’d not know the depth of the beat of My heart.
The glow of My comfort late into the night, the faith that I give when you walk without sight.
The depth that’s beyond getting just what you ask From an infinite God who makes what you have last.
You’d never know should your pain quickly flee, what it means that My grace is sufficient for thee.
Yes, your dearest dreams overnight would come true, but, oh, the loss, if you missed what I’m doing in you.
So, be silent, my child, and in time you will see that the greatest of gifts is to truly know me.
And though oft My answers seem terribly late, My most precious answer of all is still…
“Wait.”

Thursday, January 17, 2008 1:55 PM CST

Snow is falling ever so softly outside, I have the heat turned up and a cup of tea made........ A moment of peace before the storm that is called after school!

Andrew's foot pain continued to plague him. We are making some medication increases. He has his iron infusion due tomorrow so we will probably get Mary to run that tomorrow night. He has been quite grumpy the past week or so but there isn't much we can attribute it too. We will just continue on.

We got some wonderful news yesterday. As most know, Melissa is an aspiring basketball player. She excels in the game and has done a fabulous job developing skills and taking her game further. If she continues as she is going, she could run a high chance of being offered sports scholarships come grade 12. Anyhow, one of the challenges that she has is managing her diabetes while playing an intensive, high energy sport like basketball. We had heard about a camp in Oregon run by a former NBA player by the name of Chris Dudley. Chris played NBA basketball all the while managing his type 1 diabetes. Every summer he runs a camp for 75 kids from all over that focuses on BB skills as well as managing your disease while playing the game. We had to try and register at midnight on New Years Eve by email or phone. There was only 25 spots up for grabs as returning campers had priority registration. Well yesterday we got a call and she was offered a spot!!! To say she was excited was an understatement. She will attend the camp, its a little SouthWest of Portland, August 3-8th. It is our hope that when we pick her up from camp that we will take a week or more of vacation time and take the kids around Oregon some. We haven't been down to the Oregon coast in years. We have some very old friends down in Oregon that we can hopefully contact and contect with for dinner or something while we are down that way. It is a long way off but we are very excited for her.

One of the things that we have been driven to do ever since it became clear that Andrew was truly not going to be a 'normal' child and that we would never have a 'normal' family life, was to give our kids every opportunity that they would have if our situation was normal. Also, when Melissa (and we) were given the diagnosis of type 1 diabetes out of the blue. The moment we were told that was it for life for her, we made a decision that she would not be held back by it. That she would fit diabetes into her life in a responsible way, that it would not define who she was. It means we are going to 7 basketball games in a week sometimes (like this week), we are taking teenage girls to shopping malls (when we are too tired to speak) and we don't say No to things because of Andrew. I think, for the most part, we have succeeded in this goal. Our children's lives will never be normal. But God has placed all 4 of our children in our home for a purpose and they will be blessings to others and they are blessings to us, all in their own individual ways. Who would ever have predicted our lives would take the paths that they have........

Here is a link to some info on the camp Melissa will be attending:

http://www.chrisdudley.org/Areas/Camp/default.aspx

Friday, January 11, 2008 7:34 PM CST

*Would also appear that Andrew may be coming down with a cold**

Andrew had a very short night sleep last night. Which meant we did too. Today I did send him off to school for a few hours as he had special lunch today and he is always missing it. His feet are still hurting alot tonight. This afternoon he had an appointment scheduled with his pediatrician. He doesn't see Andrew very often as we do a whole lot of Andrew's care over the phone or via email. I had scheduled this just so they could 'chat' and see each other again. However, as Andrew's sore feet had worn him out he slept through the whole appt. We are going to increase his Gabapentin (the med he is on for nerve pain). We are also going to increase his IV fluids to see if, perhaps, due to the dryness of the house etc, he is a bit dehydrated and that this is causing some muscle pains (just in case). We will continue to give him Valium as he needs to keep him comfy. Tonight we have 'Mother Mary' our very dear night nurse coming. Mary has just retired, well officially although she is still working, from Richmond ER. We adore her. She always brings little things for the kids. I wake up in the morning and, not only has she cared for Andrew during the night, but she has usually cleaned my stove or some other special little tidbit. We all love Mary! Anyhow, she is here for 12 hours tonight so we can, hopefully, get a good nights sleep.

Thursday, January 10, 2008 10:49 PM CST

Just a quick little update. For the majority of today Andrew has been having really bad nerve pain in his feet. We have used waterbottles, blankets, motrin and resorted to giving him a couple of valium doses to help make him more comfortable. He is doing a bit better tonight. We have a regular scheduled pediatrician appt tomorrow afternoon. I am hoping that perhaps his Gabapentin just needs an adjustment but please pray he has a peaceful, restful and pain free night.

Tuesday, January 8, 2008 1:37 PM CST

* New photos from Seattle on the photo page *

Well, it has been a long time and is a New Year since my last update. I guess you could say that no news is basically no news. Christmas was good, busy. We had a little side trip down to Seattle for two nights that was a lot of fun. Andrew has decided he likes the life of luxury. We spent two nights at the Hyatt in Bellevue and, when we were out in the day time, he kept asking if he could go back to HIS hotel!! In all we had a great time down there and having 4 kids in a hotel insn't so bad with adjoining rooms and now that some of them are growing up.

Medically Andrew hasn't been too bad. One of the issues we are dealing with is some blood sugar issues. Without going indepth yesterday we drew blood work for the TrialNet study on Andrew. Because Melissa has type 1 diabetes the rest of us are entitled to have the trialNet done each year. It tests for all known genetic mutations found in those that are likely to develop type 1. We have had Matthew and Aaron tested the past 2 years already but had decided that with Andrew we would approach it on a need to know basis. Well, now we need to know. So we will have those results in 2-4 weeks and will move forward from there. To say we aren't concerned that he has early diabetes would be to lie, however, it is more likely that his disease is effecting his bodys ability to release insulin in the right quantitys at the right time. This isn't easy to manage either.

He had a bad UTI before Christmas that we treated with IV antibiotics at home but he seems to have recovered fromt hat hurdle. One of the blessings we can report is that with the addition of the Pyridostigmine for his bowel motility, his central line infection rate has been reduced dramatically. Where he was averaging a sepsis every 6-8 weeks he has only had one in the past 10 months.

In November we were also given the ability to do Andrew's monthly iron infusions at home. This is much easier as he doesn't have to head into the hospital for a day to do it. We just run it at home.

Melissa is doing well. Playing basketball like crazy as swimming is now done. We spent midnight on Dec 31st trying to register her for a basketball camp in Oregon that is for athletes with type 1 diabetes. One of the main thrusts of this camp is to teach athletes that are diabetic how to manage both. They only have 75 spots a year and apparently 50 of those were full with returning campers this year so there were only 25 available spots. Registration opened at midnight and they anticipated being full by 12:02am! Pray she gets in, what a great oppotunity.

Matthew is also busy with his basketball season at school and is doing well at it. He is also anticipating two band trips coming up. One to Idaho in February and one to Disneyland in April. He is excited about both. Hard to believe he only has 2 more years of school and that he can start to get his drivers licence in Oct!!

Aaron is being good ole Aaron! He is going to play spring basketball (we think) and is looking forward to going to Stillwood camp this summer. We got him all registered last night.

A belated Happy and Healthy New Year to all. Please remember, as you go into this year, that NOTHING is more important than your Faith, your Family and their Health! Sometimes the day to day cares creep up and seem like they are of mountainous importance but......they aren't......

Thursday, November 29, 2007 9:23 PM CST

We all had our flu shots on Tuesday night. Except Melissa who was at a basketball tryout. Unfortunately, Andrew had a possible reaction to the vaccine this year. About 2 1/2 hours after his shot his heart rate shot up to 195 and his breathing was irregular and he got a bad migraine type headache and was sweating like crazy. We gave him his IV steroids and IV valium and that seemed to help. For some reason it would appear that the vaccine caused an autonomic system crisis. He stayed home yesterday as he still was unwell and returned to school today for a 1/2 day. I think you all know that one of the things that Andrew has is an increasing insensitivity to pain. When he poked a hole in his eye he was irritated but not in pain. Apparently it is very painful. This is all due to his nerve damage. On Tuesday night during his crisis we heated up a magic bag for him in the microwave. It is a heating bag full of beans that warm up. I heated it up and put it on the back of his neck to help alleviate his headache. He didn't complain of it being too hot. Yesterday we noticed he has a burn and small blister on the back of his neck from being burned by the heating pad, yet he didn't feel it. This is becoming a bigger issue as time passes and his sensitivity to pain decreases. He does, however, experience internal pain in a very bad way. It is his injury type pain receptors that just don't seem to hardly tell him anymore when he is hurting. This is very hard to manage as if he hurts himself and doesn't appear to be in too much pain in means nothing. As we were reminded this week. This weekend we have a variety club Christmas Party on Sunday afternoon to go to and we hope to decorate for Christmas. A good weekend to you all.

Monday, November 26, 2007 10:17 PM CST

It has been a while since I have updated. Time has slipped by quickly. The kids have kept me very busy and sports are well under way. Melissa just finished her school swim and volleyball seasons and Matthew has just made the basketball team for school and Melissa has tryouts for basketball this week. During all of this busyness Martin and I did get away for a night last month. We spent a night at a lovely Inn on Whidbey Island. It was lovely and relaxing and just a nice time. Andrew had nursing coverage for some of the time we were gone and family took him for the rest. We have already booked to go back for two nights in February. Pray that the arrangements for Andrew work out this time also. Andrew has adjusted to wearing his new glasses and is pretty responsible with them. Unfortunately the glasses did not help with his wheelchair driving skills. He was still having episodes where he is 'driving like a drunk'. We have now established that he seems to be having more widespread low blood sugar issues with him when he is off of his IV fluids. I have emailed his endocrine doctor and talked to his pediatrician and we will try and come to work towards a fix for this soon. His ped. was thinking that endocrine may want him on his IV fluids 24/7 which would be an incredible hassle so I am hoping that there will be other options before we have to resort to that. Dr. Dan gets back from vacation this week so we will check in with him as soon as he is back. It is likely caused by increasing regulation issues with his endocrine problems. Basically his body is continuing to not regulate things properly. Other than that he is doing quite well. Has been attending school as regularly as possible which is good. Tomorrow afternoon we have to get our flu shots. I am a wimp. I hate needles. Considering I have a child who has needles in him all the time and a daughter that pokes her finger and does insulin shots many times a day I should suck it up a bit more. Well I'm off to sit and relax a bit before the end of my day. Blessings to you all.

Saturday, October 20, 2007 9:42 AM CDT

Andrew got his new glasses on Tuesday. He is adjusting to them quite well and I really believe he sees much better with them on than he was seeing before. He just finished a course of oral antibiotics for a gtube site infection again. Last Saturday we believed that he developed some hives after a dose so all week we had to pretreat with benadryl and give him the meds. Yesterday we removed it to see and he was ok so maybe it wasn't the med afterall. Which is a very good thing. It has been a very busy week. Last weekend we repainted our living room, dining room and entrance way. The outside construction did some damage to the inside walls so it had to get done and now seemed like a good time as we were moving some furniture in and out. Matthew was at Youth Camp last weekend and came home with an arm injury so Sunday night last weekend we spent 4 hours in the ER to hear it was sprained. Which is good but not the way I hoped to spend my Sunday night. We had to replace our washing machine this week or at least purchase one it doesn't come until Thursday. The old one was 11 years old and did well considering the amount of laundry that we do in our home! Martin and I have planned a night away at a bed and breakfast inn on Whidbey Island this weekend coming up. It is now going to be a bit of a financial stretch but we really need a 'date' night away! Although with the Canadian dollar doing better it isn't as much as it would have been a few months ago! We think that we have Andrew's nursing and care organized for the 36 hours we are gone so hopefully nothing goes wrong between now and then. We are both really looking forward to time together with no distractions. It has been 4 years since our last 1 night away so it is definately time.

I will put a photo of Andrew in his new glasses on the photo page. He looks alot like Martin now!!

We celebrated Matthew's 15 th Birthday this week. Hard to believe my little firstborn is now 15! He is a handsome, lovely young man and it is, most of the time, very easy to be his parents. We are very proud of the young adult he is becoming.

Wednesday, October 10, 2007 8:03 PM CDT

I am going to put on a quick update. I has been a very discouraging day. I haven't shared alot of this as we were hoping that it was just us being paranoid but......

When Andrew injured his eye a few weeks ago we were told that it shouldn't affect his vision due to the location of the cut. After the cut was healing we let him start to drive his motorized wheelchair again. He immediately seemed to be having alot of difficulty in judging space and width when driving. We were really unsure of whether it was behavioural or if he was having problems seeing. We primatively tried to test his eyes and he did seem to have a hard time with the left eye (the one that was injured). Today I took Andrew to see the Optomotrist as the Opthamologist tested his vision at the follow up a week after the accident and it was 20/40 in the hurt eye. We hoped that it would get better or that it wasn't an accuate reading. It was. After a lengthy appointment today we now know that the scaring on Andrew's eye from the cut has changed the shape of his cornea. This has caused a stigmatism at the bottom of the scar. It is affecting all aspects of his vision in that eye. So long story short, it is permanent. He will now require glasses bascially for life. So, we ordered a snazzy pair of 'super spy' glasses today. He should have them in about a week or so. So frustrating in that it was a stupid accident. He has so much other stuff to deal with it is a shame that he has to deal with 'normal' kid accidents and the reprecutions also. Once he has his glasses he will get his 'driver's liscence' for his power chair back again!

Also, he has a bad cold this week and has been home from school. He is really stuffy and yucky feeling right now. We ran some blood cultures today to make sure everything is good but I really think it is due to his cold.

Sorry, not our usual-God is good and we can handle almost anything update but that is the way it is........

Monday, October 8, 2007 10:14 PM CDT

Happy Thanksgiving to everyone.

We spent Friday night to Sunday afternoon at a retreat that we have gone to for 3 Thanksgivings now. It is a retreat for families that have a special needs child as part of their family. These children are not just children but young adults and not so young adults also. It is a great time every year. The kids enjoy it, Andrew has a 'buddy' for the weekend that helps him during the kids activities and we get to spend time with families facing some of the same things we do. We spent some free time doing crafts and walking in the woods. I'll put some photos on the photo page for you to see. It is a freeing experience that some would find awkward and unusual and those who 'know' find burden lifting and freeing. How many of you have sat in worship and had an autistic child who loves music banging on a table in tune to the worship song because it seemed the thing to do and the music made him want to make some also? Or during that same service sang the songs while standing still and watched a young adult woman with Down's syndrome dancing across the front of the room, singing as loud as she could and shaking maracaas because it felt right to her and that was her act of worship? How many of us, even if we felt like we wanted to do something like this, would have the courage to do so? The end of our Thanksgiving weekend service was communion. I am sure many of you had communion if you were in a place of worship this weekend. You were probably served your communion by Elders of your church, perhaps dressed in suits, or at the least the people that served your communion were probably those that the church upholds as leaders or mentors. This weekend, my family and I, had the privilege of being served communion by those that society would deem 'not normal'. What so called society would feel were people of less value. I walked to the front and received bread from a young woman whom society would call 'mentally retarded', who was unable to serve the elements without having a 'helper' at her side to assist. We then took the 'wine' from a young lady who celebrated her 27th birthday this weekend. She has Down's syndrome. As I took my communion I spent some time reflecting on how lucky I was to have the privilege of being served by some very special young women. Young women that weren't serving out of any element of pretentiousness or pride but solely as servants of their God. Oh, how much can we learn from those that 'society' would call 'less' yet I think, in many ways, are so much 'more' than I will ever be.

Wednesday, October 3, 2007 5:23 PM CDT

Well the eye is healing nicely in terms of no infection!! Thank goodness. You can't see anything by looking at his eye anymore, you could at first, but apparently it has scarred his cornea. He goes for a vision test in about 3 weeks as when we did the follow up at the Opthamologists office last week his vision was 20/40. I don't know what it usually is. The doctor said that the scar could cause a stigmatism which may require glasses but we are going to hope that is not the case. Other than that you wouldn't know he had done anything. We are scissor paranoid now!! Every pair of scissors in the house now resides in my sewing room behind closed doors!!

Andrew has had several days at school over the past two weeks which has been great. Tomorrow we have his IEP meeting which basically plans his adapted curriculum and what we which him to spend time on for the upcoming school year.

He never had a return of the long lasting infection that we fought. He had one more set of cultures done since the last update and they were negative which is awesom. He had a rash around his vesicostomy that was rather raw. We swabbed it and it showed some bowel bacteria which is no suprise considering where it is and it showed a yeast growth. It is on his skin so that isn't a huge problem, however, we start to get nervous when yeast starts showing up on him. So we pray for protection for his line. We are obsessively cleaning the cap between hooking him up to his IV to ensure no yeast sneaks in.

This weekend we are heading to the Family Support Network retreat that we go to every year at Thanksgiving. We will be there Friday night to Sunday lunch time. The kids always have a blast. This is the first year we have had Kody to think about so we had to find a boarding place for him. I went today and met a lady that runs a daycare/kennel out of her home and she has 5 acres that are fenced that the dogs can play outside in. So we are going to try that this weekend. Unfortunately, I didn't realize that Kody is missing a vaccine which all kennels require. So I am off in a few minutes to the 'doggy doctor' this time for him to get his immunization!! If it's not my 2 legged kids, it's my 4 legged one!!!

Please continue to keep Scott and Deb in your prayers as they continue to 'adjust' (if that is even the right word) to life without Connor with them.

Also, keep John and Christine and Family in your prayers. This is the anniversary time of Ronans passing. (Thanksgiving)Every Thanksgiving I spend some time thinking about that special little boy with the huge eyes and bright smile. Pray they are comforted during the time and that they get to spend some good family time together.

Friday, September 21, 2007 9:29 AM CDT

Fist, Andrew is fine but we had a bizarre scare last night.

Andrew's afternoon nurse was finishing up her shift, Martin was just coming in from work, I was upstairs, Andrew had been buggin his nurse to open a box that came in the mail all day and she had said he could do it when his Dad got home. So, Dad got home Andrew grabbed some scissors to open the box when no one was looking and ended up hitting himself in the eyeball with the scissors. It took a bit to get a look to see if he had just hit the eyelid or if it was the eyeball. Sure enough you could see what looked like a wrinkle on the clear coat (which I now know is the cornea) across the blue of his eye. I called and left a message for our optomotrist. Andrew's eyes don't tear properly as part of his issues. He also doesn't always register pain appropriately. He was upset and it irritated him but he wasn't in agony which made me think it musn't be so bad. While waiting for the Optomotrist to call his pediatrician called about another matter. I told him his timing was perfect. He said that it had to be taken very seriously due to infection risk etc. He wanted me to talk to the optomotrist etc. The opt. met us at her office and looked. We were all shocked. He didn't just scratch his cornea he has cracked it! She called the Opthamologist on call at the local hospital as she was actually afraid that he had pierced through as the crack is quite deep. If that was the case it would need to be sewn up in the OR. The Opthamologist met us at her office and had a good look. It took about 15 minutes of looking to determine that he had not gone all the way through (Praise God) but it was a very deep cut. He has to take antibiotic drops for the next 7 days along with artifical tears. Then next Thursday we have to go back and see her again. If there are any signs of infection in the meantime we have to go right in. He is doing ok today.The eye is a little red but it isn't bad. His vision is fine, they checked that. It isn't over the pupil which is a good thing. I am going to keep him home this morning as I am a litte afraid of bacteria at school getting in. He has nurses this afternoon and overnight which is great! It is amazing he is not in total agony but his pain perception is very different than yours and mine it makes figuring out what is serious and what isn't very difficult sometimes. I didn't think this was a big deal when he first did it......I was wrong!

On the way to the doctors office last night, I must admit I was feeling angry that we had just gone through this time of turmoil getting rid of the infection and here I was running off to doctors again. I wanted a break. I was feeling life wasn't fair. On the radio came Chris Tomlin's song, How Can I Keep From Singing Your Praise. Connor and his Mom love Chris Tomlin. I remember her emailing me that this was Connors perfect song. His montage is done to this. I was humbled and my heart was softened in an instant when I heard it as Andrew is here with me, he is doing silly things like opening boxes with scissors and getting into mischief. I thanked God (and Connor) for reminding me to find joy and I was so thankful that Andrew is here to do those silly childhood things that children do.

Wednesday, September 19, 2007 6:14 PM CDT

Andrew's cultures are still clear. That means the infection is gone at this point in time. As I said yesterday we are greatly relieved and thankful that it is gone now. Andrew has had two really good days at school. Today he had a new desk arrive that his motorized wheelchair fits under. The other one didn't work anymore so this one is good. It looks just like the other kids desks but is modified for his chair to go under and it has cubby's on the side. He was very proud of it when I went to pick him up today. He had a little friend ask me today if he could come and play one day, I can't tell you home happy that made me. Andrew doesn't really have friends that he plays with outside of school. The difference between him and his peers is too great. It made my heart sing a little to have him be just a normal kid for a few minutes.

I received a call today from the high school that Matthew (or Matt as the office called him) is to receive some type of an award at the Awards assembly for last year tomorrow. I tried to pry to see if he knew anything about it when he got home and I don't think he does as I mentioned that I thought I might come and he looked at me like I was nuts. Why would I bother going to an awards ceremony my kids weren't involved in!!

The stinky packing stuff in my tooth has made a huge difference. After getting over the nausea that the horrible taste gave me yesterday I realized just how much better it felt. Today it felt pretty good most of the day. I was able to get lots of quilting done today which helps me feel like I have accomplished something in my day.

We are hoping to attend the MCC Family Support network retreat again this Thanksgiving. The kids really enjoy it and it is a fun get away for a few days. I have to still fill out the paperwork and send it in but we are hoping it works out.

Melissa made the volleyball team. She is happy about it but is sad that some of her friends didn't. Please keep her in your prayers. She has had a very hard few days at school. Teenage girls and all their emotions and friendship ups and downs are hard to understand. She came home in tears today, not even making the volleyball team made up for the way she felt. The transition to high school is a good one but, especially with girls, it is one of changes. Please pray that she is feeling better about things soon. I hate to see her sad.

Still on Melissa, She has asked to get an insulin pump. This will be a very good move for her as it gives her so much more freedom with food etc. She can eat far more foods that normal teens get to eat. The big catch is the cost. It is $7000. We get $1000 funding from our extended health plan bu the rest is up to us. We are going to apply to variety club to see if they will help with some of it but we will see.....

Please continue to pray for Deb and Scott. They spend the day planning Connors Memorial. I can't imagine the pain and heartache they are going through........

Tuesday, September 18, 2007 5:31 PM CDT

Tuesday evening update: Sweet little Connor went to be with Jesus this afternoon. As his mom says, he is now free! Please pray for Scott and Deb as they grieve their precious boy and come to terms with their loss and heavens gain.







I have the most wonderful news.............

After 2 1/2 weeks of positive cultures we finally have 48 hours of no growth on a blood culture!!!! It took 2 1/2 weeks of two different strong IV antibiotics but we finally won the battle against Serratia!! I spoke with Andrew's doc today who was equally as thrilled as we are. We will stop IV antibiotics tonight and hold our breath that he doesn't get sick again, although, with negative cultures, that isn't likely. His doc wants to draw some more cultures early next week just so we are 100ertain it is gone. I can't tell you how relieved we are. We really, really didn't want to have to replace his line because of this. One good thing is that, through the world of other families over the internet, we have heard of a special type of lock that can be put into the line if this happens again. This is very effective, along with antibiotics, of purifying the line. So we have an ace up our sleeves for next time.

I finally caved in and went back to the oral surgeon today. I woke this morning very sore again and even had some swelling. He said I have a partial dry socket and put this very smelly concoction in to pack it. I have to go back on Thursday to have it done again. He said he thought I would have relief in about 1/2 hour of doing it and sure enough it made a huge difference. It is still sore but I don't have the throbbing pain at the moment. I am so thankful I finally went in. It's funny how with our kids we go in right away, when it is us, we just push it off and push it off and just suffer!

A few days ago I asked for special prayers for Connor and Issac. Two caringbridge friends of ours. Issac is doing a bit better but his mom is very tired. Please continue to pray for her.

Connor is not doing very well at all. It was the hope to keep him comfortable so he could enjoy his time at home. This hasn't happened and now Connor is being sedated to keep him comfortable as the yeast infection is more agressive than they had hoped. Please pray for Deb, Scott and Connor. They need peace and comfort and love during this very difficult time. I can't imagine.

Alison

Sunday, September 16, 2007 9:33 PM CDT

We redid Andrew's blood cultures today. We should know by tomorrow if the double doses of IV antibiotics have helped. If not, someone we know came up with a special lock that is done on the line to try and purify it. If we can get approval we will do that next! As long as he isn't sick we don't want to easily give up the line. His doctor seems willing to try this next if we need to.

The sewing room is done!! We sat in it this afternoon and thought, why didn't we do this years ago! Tomorrow we have a nurse for the day and I am going to go to my 'retreat' space! That is one of the main reasons it was created. I will put a few photos on the picture page so you can get a little glimpse of it. We ended up getting some carpeting free off on Craigslist and it worked out great. I was able to pick up some desk top material from the Ikea as is bin for the work top. I was so happy to do it all on a budget!! The shelving unit that holds all my quilting fabric I got at a garage sale for $10!!

It is hard to believe but two weeks after my tooth 'surgery' I am still getting so much discomfort from my jaw and gums. I really wish that it would go away.

On Friday night I went to the meet and greet at my old highshcool for my 20th Grad Reunion. It was kind of fun to see all those people after 20 years. We were unable to go to the casino night on Saturday as we didn't have anyone to care for Andrew but that is ok.

The other kids continue to do well. Melissa has the last of her volleyball tryouts on Tuesday and swimming for school starts this week also.

Thursday, September 13, 2007 8:39 PM CDT

Andrew's tobramycin levels are good so he will continue at the same doses into Monday and then we will culture again. Continue to pray that the bugs are gone and the antibiotics are working. He is still doing well. Perky and silly! He was able to go to school for a few hours this morning and will go tomorrow morning also.

Tomorrow evening I am taking a bit of time to go to my 20th High School Reunion. It is a coffee/tea/walkabout at the school with some of the old teaching staff. The school is being pulled down next month as it has been rebuilt so this will be kind of sentimental! I am going with my old best friend from high school so if should be fun! Martin gets to stay home with the kids and lay flooring in the sewing room. I put the last coat of paint in there this afternoon. Now the floor and then to make a work surface on the weekend! Hopefully by the end of the weekend it will be done.

We have a few special friends who could use some extra prayers tonight. They are children and moms and dads we have never met in person yet they are as close to us as any of you that we know in the flesh and blood. These moms are my Sisters in Christ who are also parenting children with very complex medical needs. I don't know how we 'met', I don't know how tall they are or, in some cases, the colour of their hair or skin. It doesn't matter anyway as our hearts are bound by a love for our Children and our God. Tonight please say a prayer for Connor and for Issac. Both these little boys are dealing with some very big struggles right now and I know that their parents would covet prayers from around the world for them.

http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=connorscott99

http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=isaacsimpact

Wednesday, September 12, 2007 10:20 AM CDT

** Brief Tuesday update, the cultures from yesterday are positive after 12 hours. He is still ok but the bugs are still in the line. Please PRAY very hard that the new antibiotic we added works. We really don't want him to lose his line to this**
Andrew has been having a good week! He has been perky and fun and flirting with every new lady he meets! What is somewhat frustrating is that we are running back and forth to the hospital alot due to those darn positive line cultures from last week. Initially, 2 weeks ago, the infection made him sick. Now he is fine but that is likely due to the antibiotics blocking the bugs from making him sick but they hadn't got rid of it. So we added a second antibiotic yesterday for which we had to go to the hospital to get started. We redid cultures yesterday and he will continue on the two antibiotics for about a week and, we pray, the line clears. If not it would have to be removed which, when he isn't sick, is very frustrating. We have to go back today for the 4th dose of this particular med as they need to draw levels pre and post infusion. One thing we would ask that you pray for is that Tobramycin can be harmful to the kidneys, with Andrew's past renal failure, it always makes us nervous when we have to use a nephrotoxic medication. The best news would be that the cultures from yesterday are now clear, then we only need do this for a few more days.

Monday we had a full day of appointments at Childrens. Andrew's new neurologist seems very nice and incredibly throrough. Andrew was having a very good day which is awesome as that gives them a chance to assess his abilities when well. The new med we have been using is very much experimental in the use we are using it for. The neurologist and the metabolic doctor now need to approach something called the innovative treatment board to try and take the use of it further. This is also something they need to do if they would like to publish the results that we have had in using it on Andrew. Overall, the addition of this new med has greatly helped Andrew. The other thing they are going to do is contact some more specialists in dysautonomias and they will plan on mapping Andrew's genes, to see if it shows anything. I don't begin to understand the genetic/chromosome part of things.

The other three kids are doing great. Aaron has had a bad cold this week but it hasn't slowed him down at all. Matthew and Melissa are busy at the high school. Melissa has day 2 of volleyball tryouts today so she has been having late days. She seems to be adjusting to the high school schedule well.

The sewing room needs another coat of paint. If I was home for a few hours I would do it! Then we need some carpet and a work top! Maybe this weekend we can get it done. I want my sewing room!!

The soreness in my face continues. I have to say that the whole process of having this impacted wisdom tooth taken out has been a much harder ordeal than I ever would have thought. That, combined with the start of school, Andrew's illness, coming back from holiday, appointments etc. I have been totally worn down this week. It is amazing how having something slightly wrong with the body can throw everything else out of whack. I'm not complaining. I am just used to being able to do everything and this time I can't.

Hoping Andrew can get to school for a few hours tomorrow!

Sunday, September 9, 2007 9:26 AM CDT

Good morning all!

What a lovely, bright Sunday morning so far. It started a little too early for my liking but, heh, that's ok. I thinkt he meds that I have been on for my jaw surgery have sent my clock out of whack as yesterday and today I am waking at around 4:30 and having a hard time getting back to sleep. That and because I can't eat anything I have to chew I am waking up starving in the middle of the night.

Yesterday we began the process of making a small sewing and craft room off of our bedroom for me. We have a small room under a sloped roof that has been completely full of just stuff since we moved over here 9 years ago. One of the things I love to do is quilt and sew and scrapbook. Having home nursing is great but, as anyone knows that has a small space to live in, it is easy to get in each others way. When I sew right now I have to set everything up at the dining room table and it seems that takes more energy than it is worth sometimes. Then when the nurses come I feel I kindof need to move out of the way or Andrew just demands all he wants from me instead of them. So we have emptied it out of all but fabric (and we won't talk about how much of that is in there) The next few days we will paint it and move some furniture and organization stuff in. I need to make some type of an l shaped desk for the machine and a work top but we will get there at some point. What really helped to inspire this was when the renovations were all done this little room has a nice little window in it now so it gets some natural light. A main need we have is for a small piece of carpeting about 5
X 11. The floor of the storage room is just plywood so we need to cover that this week so I can put the stuff in it. (So if you have an odd piece of capet or old laminate flooring let us know!) I hope to have everything completed by next weekend if possible. I have made Melissa, Andrew and Aaron all quilts over the past few years and haven't made one for my firstborn, Matthew. I have everything for it, have had for about 2 years, I would like to get this made for him by his birthday on October 16th. On the fun side, it was like Christmas yesterday going through all the boxes of fabric! (You have to be a quilter to understand!)

My soreness in my face has been better but I am having periods of still being really sore. I had to go back on Friday as I still have a lot of reduced sensation on the bottom right side. Apparently the nerve may have suffered some trauma during the procedure due to the tooth being very deep in the bone. It could take up to two months to regain all feeling.

On Thursday Andrew's temp crept up again, not high, just up above what I am used to seeing. He is fine but we redo cultures and he is still growing gram negative rods in his line. The on call ped phoned yesterday. So we are back on his Meropenum while they awai the id of the bug and we will see what the next step will be. A different antibiotic or higher dose? We aren't sure. We have lost lines to yeast before but never to bacteria so I would really not give up his line without more of an antibiotic fight. Also, the fact that he is ok right now reassures us that the antibiotics are keeping the bugs suppresed even if they aren't getting rid of them.

Tomorrow we have a long Children's hospital day. We meet with a new neurologist at 11:30am. She is the one that has been helping metabolics dictate the Mestinon dose that Andrew is on so this is quite important. Then at 1:30pm he has his 6 month follow up with Metabolics. Andrews pediatrician is joining us for both appointments. That is such an amazing sacrifice for Andrew. We can't say enough about how appreciative we are for his ongoing above and beyond comittment to Andrew. Life would be far more difficult in our home if we didn't have a team member like him on our side.

We will update over the next few days.

Holding on to a scripture for this week, "All your sons (and daughter!) will be taught by the Lord, and great will be your children's peace."

Is. 54:13

In the busyness of the week, may you and I, hold on to this promise.

Alison

Wednesday, September 5, 2007 5:05 PM CDT

Well, I am minus a wisdom tooth and have gained a whole lot of swelling and numbness in my face. Yesterday was a blur the anesthesia must have really whipped me because I don't even remember the ride home, leaving the office or a good portion of the afternoon. Today is better but I am sore and we are hoping the numbness is from the swelling. Unfortunately due to the location of this tooth. It was very deep in the jaw bone and totally under all the other teeth and sideways, I run a higher (1 in a 100 instead of 1 in a 1000) chance of having some permanent nerve damage. Only time will tell.

Andrew is now on the recovery end of his infection. Serratia is a very nasty bug that hit lightning fast and hard. I talked with his usual pediatrician last night and the fact that his fever lasted longer into treatment than some of the other times would apparently be expected with this bug. The positive is that we are winning now with the IV meds!

On Monday we have some appointments at Children's that are always very important so please pray that they are usful and go smoothly. We are so thankful that Andrew's ped is going to join us again. That is a huge benefit to us.

Also, the kids are at school for their first fulll days today. Melissa on her first day of highschool (grade 8) Matthew in grade 10 and Aaron in grade 6!! Andrew is starting grade 4 and today we spent some time getting an appropriate desk (table) arranged for him so that his new power wheel chair will fit under it. He will ease back in slowly as he is just recovering from the sepsis and he never takes well to his routine being drastically changed really abruptly so we will go slow with him over the next few weeks.

Just a little update and I have to go rest again now. My face hurts!

Sunday, September 2, 2007 8:23 PM CDT

Hi everyone, it has been a long time since I updated. To make a long story short, I ended up accidentally deleting all 7 years of Andrew's page by accident. Caring bridge was awesome and were able to retrieve it all for me. I then 'locked' it so I couldn't make the same mistake twice and promptly forgot the password I put on it!! Things are now in order!!

I am going to be real quick as I am very, very tired. Andrew's summer went well with the exception of small blips here and there. Last week we spent 5 nights at Whistler and had just a lovely family time. We no sooner had walked in the door, literally, when Andrew spiked a high fever and started to get very sick. He has postive blood cultures which means he is growing bugs in his blood. He went 8 months between sepsis episodes which is marvelous as he was going septic every two months roughly. So we are thankful that it was a long break in between. He is struggling to get over this one though and was still spiking very high fevers this morning. He is on the correct antibiotic so hopefully he will turn the corner soon. Tuesday morning I am having an impacted wisdom tooth removed under general anesthesia so we are hoping he stabalizes by then. His regular pediatrician should be back in service after the long weekend also! Please keep us in prayer as we have all of this going on and also school starting this week.

Wednesday, July 11, 2007 10:02 AM CDT

It has been a while since my last update. That is good. That means that nothing earthshattering is happening here. Although, the earth is certainly moving around here with all 4 kids now home for the summer. Tell me why it is that siblings talk to each other in a way they would never dream of talking to their friends!!!

My surgery, which seems like forever ago now, went without a hitch. I was incredibly tired from the anesthesia that day and slept the majority of it. But that was about it. I have heard nothing on the biopsies so I am assuming this is good news. I know have a wisdom tooth that needs to be taken out. Another general anesthesia in about 10days!!! When it rains it pours.

Melissa was at diabetes camp last week. She left feeling sad because she wasn't in a cabin with her friend from the past two years. So I worried the first couple of days she was gone that she was miserable. However, she had an absolute blast and she can't stop talking about all she did and the new friends she made. She is back to swimming now and is doing phenomenal! The next few weeks will be very busy for her leading up to Regionals on the August long weekend.

Aaron and Matthew are both good. Enjoying boy things......water balloon fights, running in sprinklers, playing on the computer, having sleepovers etc. Doing boy stuff. We had hoped to take the kids camping for one night tonight. We figured Andrew would be ok, minus equipment, for one night. However, with humidex numbers reaching 44 where we were going, we have thought better of it and will go another time. He doesn't do well in heat at the best of times and heat like that certainly would be hard.

Next week we are very excited that our friends John and Christine and the kids are coming through. I think we are going to camp one night with them about 10 minutes from home!! If all works out. (Christine, we need to talk in the next few days!)

Andrew has been doing pretty good. He has been going through a time of relative stability and that has made some day outings easier. The day we dropped Melissa at the ferry for camp we went up Cypress and to Iona Beach (we had never been there) So we got to play in the snow ( the boys were stunned there was snow on the trail ) and then play in the Ocean on the same day. ........and why would you want to live anywhere but BC??!!

WARNING: Andrew is receiving his new wheels next Monday. This is an amazing answer to prayer. The power chair is READY!!! We were told it could take 6 months ie: the Fall before it would be done but it is ready in less than 2!! We need him to have time to learn to drive and not hit anyone or anything prior to school in September so this is an amazing answer to prayer. We go on Monday afternoon to have it 'fitted' and for him to get his lesson. Then we bring it home. I think it will give him a huge amount of freedom that he doesn't currently have when he is 'well'.

Anyhow, stay cool today. We will be holed up in the house beside the airconditioner I think. Even the dog didn't want to go for walks yesterday because he was too hot!!

I'll post some photos of Andrew in his wheels next week!

Please pray for our little friend Connor. He has a yeast infection in his line. We have been that road several times. Please pray that it gets better and they can save the line. And celebrate with us that Andrew's little friend Benji is finally home after MONTHS in the hospital trying to get his gut issues figured out. Benji has a dysautonomic syndrome with no name and is very similar to Andrew. He lives in the Eastern US.

Wednesday, June 20, 2007 8:47 PM CDT

Well, Matthew has been home since Monday........Isn't it September yet?? Just kidding. It has just been really busy as the other three are still in school this week and all the last minute field trips etc are keeping us hopping!

Andrew has had a pretty good week. He had a little party at school yesterday to wind up the year. They all have school till Thursday afternoon though. Melissa has her grade 7 'graduation' on Wed. and there are about 3 field trips left over the next few days.

We had some good news. We have a new nurse being orientated to Andrew on Monday. The most amazing thing is this is someone who I have known and admired for over 20 years. We don't see each other very often but it is very exciting to think that she is going to be one of Andrew's new caregivers. I look forward to seeing her on Monday. We are also trying to get some approval for private duty nursing through extended health. I'm not sure how or if that will work but we are making a n attempt.

Next Thursday I am having surgery. It is a day procedure but I might be out of commision for a couple of days afterwards. Please pray that everything goes well and that the care for Andrew comes together over those few days. If anyone local wants to make a dinner next Thursday or Friday night we would gratefully accept (just send us an email) as Martin will truly have his hands full between Andrew, me and the 3 kids. I know that after doing all that after his eye surgery! Difference is I won't be able to lift Andrew or anything for a few days.

I have to go take Melissa to the pool. I will try and give a better more interesting update next week!!

Sunday, June 10, 2007 10:45 PM CDT

Just a quick little journal entry to let you know about our weekend.

First, Friday Andrew went for his bone scan at Children's. The test took close to 4 hours to complete. We hope to have results soon.


His weekend was a bit better than his week had been. So we hope to get him off on the right track for this week.

This week is so busy with track meets, specialist appointments, camp for Melissa etc. I'll be glad when summer actually starts I think.

Melissa, along with us (minus Andrew) and two friends took part in the JDRF Walk to Cure Diabetes today. It was wonderful. If you would like an email link to see her photo montage of her today. Send us an email and we'll send you the link.

For those who are on Andrew's mailing list, we sent you a link to a special photo show we made for Andrew this weekend. It contains photos from the past year, good days and not so good days. But mostly the better days. Please turn on your speakers and enjoy. The link is at the bottom of the page if you didn't get the email or would like to see it again. !

Wednesday, June 6, 2007 10:41 PM CDT

Sorry I didn't update yesterday after we returned from Children's. It was a very full day.

So the surgeon was correct in his guess, based on the photos, that the cuff had slipped down off of Andrew's vad. He was able to basically push it from the outside back down on to the stem that it is supposed to be on. We then went to xray and had pictures taken of it and then went back over to see the surgeon to see what the xray said. The cuff is back on the stem but not all the way down. He is ok with leaving it like this. He thinks the risk of going in to fix it for the sake of making it perfect is greater than the benefit. Therefore, if it is still working we will use it as is. It means there is a slightly increased chance of breakage. The chain of events went well in terms of getting it seen. Paging Andrew's primary doctor to call the surgeon directly really expedited things. Anyone who deals with a Children's hospital knows that the process is usually much more complicated. His surgeon was so good to fit us in and take care of this as yesterday was his last day as he is off to Africa for 3 weeks! Unfortunately, it did hurt alot when he pushed this thing back on. If you would see the size of this surgeons hands, you would run. So Andrew had a rough night. The stress of the events made him have more autonomic symptoms than normal last night. He spent a couple of hours with his heart rate really low 45-63. This is not dangerous in itself but it isn't good either. Martin had to wake him, which didn't help, but then manually move his arms up and down to get his heart pumping harder. Then Andrew started laughing and things were better.

Another big issue recently is the amount of back pain Andrew is having. He gets it when he is upright in his wheelchair, moving around, lying in bed. At times this pain is becoming very debilitating to him. We were hoping that increases in his Gabapentin would help. Those increases need to be made slowly and the meds take time to take effect. We are having problems finding a good way to keep him comfy when this is happening. Hot pads, water bottles etc. do some but not enough. We are increasing some doses of reactive pain meds that we use over the next couple of days. We are needing to do them during the day just in case there is a bad reaction as they are narcotics. Andrew also is running a low grade fever and hasn't been himself today. I'm not sure if this is reactive because of the stress yesterday or if he is getting unwell.

One piece of good news. His doc ordered a bone scan to check his back. This bone scan needs to be approved by a special radiologist before it can be scheduled. Well we were told she isn't even back for two weeks. I'm not sure what happened, whether it is because we were there yesterday getting xrays or what, but I got a call today that they are doing it on Friday. This is really good because this may, or may not, help to determine the cause of the back pain. So Andrew won't be able to go to school anymore this week but these are things that have to be done.

We also had Andrew's IEP at school today. This is basically setting goals for Andrew for next year and assessing the results of this years goals. One thing that you need to realize is that Andrew takes a long time to learn things. I don't just mean a little longer than your average child, I mean years longer than a 'normal' child. It has taken about 5 years to learn his ABC's and sounds etc. This makes making goals for Andrew educationally very hard. You don't really see results. The fact that fatigue (he is needing to sleep quite a lot at school) and health play into it makes Andrew's learning very very slow. This along with the fact that he is going into grade 4 and is learning at about a kindergarten level obviously makes setting education goals difficult. We have decided, along with Andrew's doctor, nurses, teachers etc, to take a more life experience/enjoyment approach to his schooling. When we look at the big picture is it going to matter if Andrew knows the provinces and capitals or does it matter if he feels he contributes and has self esteem and, above all, enjoys his time at school. So, we are changing our approach quite drastically.

He will still have friends, do some learning, have fun being a valued member of his school. He will still learn........but I guarantee you, everyone around him will learn more from him.

Love to all, Alison

Monday, June 4, 2007 10:56 PM CDT

I'm going to do a real quick journal update tonight as it has been a crazy day and crazy weekend.

Melissa and I were at a swim meet all weekend and being that it was the first of the year. We were bushed after.

This morning we awoke to an early swim practice, construction workers in the house demolishing our bathroom at 7:45am. They were here all day. Plus it rained, was a professional day, Andrew had a nurse at the house and I was making many phone calls to Children's and doctors to try and figure out a problem we are having. I am ready for today to be over.

Andrew had a lump appear above his VAD site this weekend. His VAD is his implanted IV site in his chest. I showed his doctor photos of it yesterday and he felt we needed to get photos to the surgeon today. So after emailing doctors, calling them, paging them. The surgeon called this evening to say he looked at the photos and he is concerned. He isn't worried so much about infection as he is about a mechanical malfunction. There is a cuff on the line that he has never seen disconnect but he is wondering if that is what has happened. We will meet him tomorrow in his clinic and he is going to feel it and see if that is what it is. If it is he is going to try and manouver the cuff back into position through the skin. Please pray that whatever this is we can fix it easily and that no surgery will be needed.

Wednesday, May 23, 2007 9:03 PM CDT

Well we had a very busy weekend moving some fences in the backyard and extending our deck out to make some more outdoor living space to enjoy. It went well. We need some more bricks and we need to flatten the soil a bit more so we don't have a wavy deck. I cashed in some air miles for some gift cards and we are planning on getting a patio set for back there over the next couple of weeks. This weekend will be very busy with a garage sale on Saturday and a swim meet on Sunday.

Andrew has had some ups and downs the past couple of weeks. The new med has begun without any obvious side effects. He will have the dose increased next week. He has been having more periods of autonomic instability where his colour changes, he gets very tired after. Imagine your breathing, heart rate, pupil dilation, stomach emptying, swallowing, every function that you have no control over, going screwy all at once. That is what happens to Andrew in autonomic crisis. It passes but it appears that it is tiring him out more and more as he tends to spend more time sleeping after. I think that is to allow his system to regroup. School can be very challenging and tiring for him and, it seems, that he is spending a lot of time needing to sleep at school. It is not because he is not getting enough rest but stimulation causes his system to not function as well and that creates fatigue. It makes it hard because I will send him to school thinking he is doing ok and then he ends up having not so good a day. I'm not sure what is going to be the best for him in terms of plans for school. We are thinking things over carefully and consulting with his therapists, nurses and doctor. I am going to try and put a photo on the photo page of Andrew's eyes during crisis. Look at the difference between the size of his pupils and mine in the same light. One of the outward signs that we get is pupils are unable to constrict when in crisis. You can get just a little glimpse of how wacky his sytem gets.

Some very good news. Andrew's motorized wheelchair has been approved!!! Now we wait for them to make it and get it to us. It can apparently take 2-12 months!! Hopefully it takes 2! I am meeting with the school OT tomorrow morning to go around the school to make sure that the school will be easily manouverable for Andrew to drive around. I think we are plain crazy and I plan on buying everyone protective padding for Christmas!! What a wonderful sense of freedom it should give Andrew once he becomes adjusted to it.

Melissa had a bad day with her blood sugars today that required a semi panicked call to our ped from me. Her sugars were over 30 (extremely high) and not coming down with her insulin and she felt really bad all day. She came home from school after just a couple of hours. Things are a bit better now but she hasn't come down completely yet. Not sure what happened to drive them up so high. I was fortunate that a good friend was able to run over to the school to bring her home for me as Andrew was running on his IV at home and I can't just leave!



A good weekend to all.
Alison

Sunday, May 20, 2007 10:30 PM CDT

We are celebrating our 18th Wedding Anniversary today. So I am giving no medical update but a different one instead. Martin and I were lucky enough to have my Godmother offer to have the kids over to her house for dinner so we could celebrate on our own. The weather is miserable today but we had a great evening. We had some appetizers and wine and had a lovely dinner we made and watched our wedding video. It has been years since we watched it. (Just so you know, you all look much younger in it!! But so did we!) As we were watching the video and remembering the good times we came to the toast to the bride that my "uncle" Roy made. As I heard it tears came to my eyes and we both though, boy, when we heard those words we had no idea how poigniant and foretelling they would be. So let me close today with the quote that was recited at our wedding and let you see exactly what we mean................

The Man At The Gate

I said to the man
Who stood at the gate of the year,
“Give me a light that I may tread safely
into the unknown.”


And he replied,
“Go out into the darkness
and put your hand into the hand of God
That shall be to you
Better than the light
And safer than a known way!”


So I went forth
And finding the hand of God
Trod gladly into the light.


- by M. Louise Haskins
[The prose was used at the funeral of Her Majesty the Queen Mother on 2 April 2002. Her husband, King George VI, started his Chrismas address to the nation in 1939 with it as well

Sunday, May 13, 2007 3:15 PM CDT

A very Happy Mother's Day to both Grandma and Oma. May you have a wonderful day full of Blessings and cheer.

Mother's Day is a little different for me now compared to when I was first a Mom. When I was first a Mom I only saw the joy and the cuteness in Mother's Day. I was a young Mom, very happy to be one, very in love with the idea of having a family as well as with the family I was given. As the years have passed so has my perspective. Now I am celebrating my 15th Mothers Day it is still a joy. It is still wonderful to wake up to 'not so little' kids coming around to wish me a special day. I still love that. However, due to this path that I have been asked to walk, the path of that of a Mother to a seriously ill child, I no longer look at things through rose coloured glasses anymore. I delight in all I have been given, delight in the fact that we made it through the challenges once again. However, a small part of my heart aches. It aches for those Mother's that, through this world of special needs parenting, I have come to know and love. Those Mom's who don't have one of their children running into them this morning and telling them they love them. Those Mom's who need to reach their arms to heaven to hug that special child that is gone. I am sure they delight in the children they still have on earth, yet long for the the one/s in heaven. I feel so very blessed to have been able to befriend some of these ladies who have taught me that you go on - no matter what. So to Christine and Tracy and Sharon and many more....... Please know a little piece of my heart is with you today and I hug my children a little tighter because I can.

Melissa is a teenager. Yesterday we became a two teen two preteen family!! Our darling girl is 13. To have a daughter is a joy, to have Melissa is a 1000 times more than that. She exudes joy, self confidence, compassion and commitment. Whether it be as a Sister, Basketball player, swimmer or friend. Melissa always give 110% to all she does. She has taught me so much.

Andrew has had the misfortune of having both a UTI and a vesicostomy site infection so he is on two different oral antibiotics at the moment. HE is doing ok though. He had his bone density scan on Monday. No result yet. He also met with urology. Dr. M is going to do a revision of Andrew's vesicostomy on Sept. 4th so that it causes him less problems. Hopefully. We begin his new med for his nervous system on Wed. Pray that it doesn't have any side effects. We need to do it during the day with his pediatrician within responding distance due to some potentially serious side effects.

Well Matthew just got home from Powell River where he has been for 3 days for the BC student film festival. So I need to go hear all his adventures.

Blessings to all..........

Tuesday, May 1, 2007 11:43 AM CDT

Just wanted to pop in to say things are ok here. Martin is recovering from his eye surgery and goes back to see the specialist on Thursday morning with a list of questions. Overall though, I think he is really pleased with how it is looking.

Andrew has a sleep study at children's tonight just to check his bipap settings and make sure they are good which I am sure they are. We will head in around 7 tonight and leave around 9 or so in the morning. I probably won't get alot of sleep though. Never do in the TCU. We are in the process of adjusting a bunch of Andrew's meds so that the doses match his weight. Since using the valium for crisis since last summer we have seen him put on some weight which is great. He is having a not too bad week. Hoping things remain stable this week.

This Saturday Melissa and Aaron are having their birthday parties so we will be having a very busy day on Saturday.

Take care all.

Wednesday, April 25, 2007 8:24 PM CDT

I know I had said that I would update the site after Martin's surgery last Friday but I don't think I took into account how VERY busy I was going to be. Being the sole driver, and for the first part of the week, sole caretaker, was more than I thought it would be.

First things first, Martin's eye surgery appears to have been a success. The eye looks pretty darn straight to me. What he is having a hard time with is the sudden change in his vision after 42 years. It is taking time to adjust to the way he is seeing now as compared to before. His vision has not improved per se, but we knew that before he had it done, but it has changed. It is taking him longer than he had anticipated to get his bearings. He feels like he is tilting alot. The brain will eventually get used to the new signals but it takes a bit of time. He is going to head to work for a while tomorrow to see how it goes. Cosmeticlly it looks great, even with the bruising and swelling still, you can see that the eye is straight. You will be pleased when you see him!

Andrew has really been bouncing around a lot recently. He has good days and not so good days. I met with his pediatrician yesterday. We drew blood cultures to just make absolutely sure that the yeast infection is gone and hasn't found a way into the new line. We should have some results on that tomorrow. We also sat down and made a bunch of medication adjustments to try and bring his levels up to better levels to see if that helps. He has gained wait since we have been using the valium for the autonomic seizures and his seizure meds need to be increased to keep up with his growth. The other thing that has been a greater complaint again is his hand pain. It has actually awakened him a couple of times this week. We are increasing the med that is for nerve pain also to see if that helps. The other new thing is that the Endocrinology dept. has okayed the use of the new med that the Metabolic dept. wants to start. It is a rather controvertial med and isn't used alot. However, it has the possiblity of helping his with several of his autonomic issues. We are going to begin this in about 3 weeks when the seizure meds reach their new levels. We can't do it all at the same time or we will not know what is helping. One of the problems that it can cause is a decrease in heart rate. Therefore, we will only be using it during the day to begin with as we already have problems with Bradycardia overnight. This week on two nights his heart rate was dipping into the 40's which is too low for a child his size. We will begin it when his doc is close by and easily accessible just in case it creates a problem.

Next week on Tuesday night Andrew will have an overnight sleep study done in the TCU. We just need to know that his bipap settings are all adequate. Which I am fairly certain they are.

Then on May 7th we have appointments for a renal ultrasound and a visit with his urologist and a repeat bone density scan to check that. We should be hearing soon about an appointment with hematology to address his ongoing iron needs and low blood counts.

Well that was a very medical update wasn't it.

Tonight Melissa and Aaron are at school doing the last of 4 performances of Treasure Island. We went and saw it today and it was really quite good.

Blessing to all.

Thursday, April 19, 2007 8:32 PM CDT

Just wanted to give you an update on our week. It has been rather crazy with different things on the go and Martin has been extra busy at work this week so we've all been running everywhere.

Andrew is ok but has struggled a bit as the week has progressed. Monday morning he had a rash all over half of his chest that was fluid filled bubbled. We started an oral antibiotic straight away as it appeared to look like the rash he gets when he has a staph infection. The keflex seems to have alleviated that which is good. He has several issues that are problematic right now that I need to talk to his ped. about, however, we have been trying to push everything off until next week. He had his oxygen assessment done again which just basically says he still requires oxygen supplementation at home. I followed up on his bone density scan and his hematology consults today as I hadn't heard anything. Well, would appear that both sets of paperwork disappeared before they got to where they needed to be so I'm waiting for appointments that aren't coming. I emailed the doc that sent the referrals and she was miffed at the system but said she would resend them both today.

Martin's surgery is scheduled for 11:30 tomorrow. It is usually only about 45min but the doc is anticipating it could be up to 1 1/2 hours due to the complexity. So please pray that the surgery is successful, for Martin to have good night rest tonight and for him to be comfortable in the first few days after. I will update tomorrow evening if I can as to the outcome.

Thursday, April 12, 2007 0:15 AM CDT

Andrew's appointment at Children's went well yesterday. The ENT doc had no real concerns. He started Andrew on a steroid nasal spray to try and help with his congestion and breathing at night. We'll see if I can get him to take it. His hearing test was normal. I can't say I am suprisd I thought he could hear ok. Certain levels of sound or pitches seem to bother him more. But he can hear fine which is great.

Today he had his iron infusion. He slept through the whole thing so that was ok. His blood counts are all low, including his white blood count. This would mean that he is more susceptible to infection right now so we will be very cautious around groups and sick folks until that comes up a bit.

I have a special prayer request. Those who know Martin know that he has had a bad eye since infancy. His left eye is "lazy" and surgeries in his childhood to correct it left only scar tissue damage. Well we have found a doctor that thinks he might be able to fix it. So next Friday the 20th he will have day surgery to try and correct it. The surgery itself isn't a big ordeal but I do know that he is nervous as most would be when their eye is being operated on. PLease pray for his nerves, that the surgery is successful, that Andrew is ok that day and that nursing is able to cover him for the day so I can stay with Martin during the day.

Tuesday, April 10, 2007 10:01 AM CDT

Andrew had a pretty good Easter. We were very busy Friday and Saturday with Melissa's basketball tournament though. Sunday he had an egg hunt. The bunny came while we were at church which was perfect!

Today he has an ENT appt this afternoon to check his hearing. I am unsure if he is having some hearing problems or if he has selective hearing like his siblings. He is taking Kody for show and tell this morning so that should be fun. He also has an iron infusion tomorrow morning to boost his numbers up a bit. The new line is working well which is great and a huge relief. He is still struggling with back and neck pain and we are awaiting what type of plan will be next. He had a bone scan done last August and it hasn't been read yet due to technical issues!! Can you believe 8 months for basically an xray report. I have suggested we just do it again as it is going to be nearly outdated by the time we get it. Anyhow, got to go get Kody ready to go to show and tell!

Tuesday, April 3, 2007 3:51 PM CDT

Andrew had a pretty good weekend. We went to a pet expo on Sunday afternoon, we even took Kody with us. It was fun. Look on the photo page for a couple of photos. Andrew wasn't too sure what to think of the big snake!!!

Also on the photo page I want to include a picture of one of the most memorable Christmas gifts I have, and probably ever, will have received. Andrew did a watercolour painting at school at Christmas of a church. It was "copied" from a photo at the front of the class. So many times people may wonder how much value Andrew has in his life with being sick all the time, on IV all the time and in and out of hospital and critical illness so often. Sometimes we get these little glimmers that come through that say "He gets it!". This was one of those. My kids will tell you I cried like a baby Christmas morning when I opened up Andrew's gift. A special thanks to Mrs. Fryer, Andrew's teacher, for leading the class in a great project. We just had the masterpiece framed and left the rough edges on the paper on purpose. Please take a peek on the photo page. It will never hang in a museum, be worth a million dollars to anyone else. However, to this family, it is absolutely priceless.

Friday, March 30, 2007 1:08 PM CDT

Andrew has had quiet a good week. He is finally back at school part time and is looking better. He does have a small infection at his gtube site but it seems managable. I want to share with you a little high point in my week. Some of you, who have followed Andrew's site for a while, may remember a journal entry I did about 18months ago about the deep meaning a Matt Redman song Blessed Be Your Name has to me. I'm going to paste it here so you can see and then I'll explain why I am bringing it forward again.......

Now, I want to talk a little bit about something different. To those who read this and don't share the same Spiritual beliefs that we do.....This is not meant to preach.....this is meant to share something that is very meaningful to me. Now....

Each Sunday, for many of us, we sit in our churches and we spend a good portion of the morning singing. To those who don't go to church, we might look kind of funny....you might not understand why we sing, why some of us raise our hands....close our eyes.......clap our hands. It is a time of communion-not in the sense of bread and wine, but in the sense of a time of oneness with our God. There are times when I stand and sing the worship songs and I don't let them actually work in me. I sing them but I am not singing them to the One I love. At the end of a bad week sometimes my mind is not immediately in that place of true Worship. Many of you who are a part of our church family will see that while we are trying to worship, we often have Andrew pulling at our shirts, poking us with his guitar, snoring if he falls asleep, asking when Sunday School is.......you all know how it is. Yet that time of my week is a time that I personally treasure... for even if my mind and heart are not there in the beginning, with openess it happens.....the music starts to speak to my heart, the words are not just words but prayers. Worship music to me is far more than words. Worship music to me is an expression of how I feel about my life and about my God. Worship music is far more than talk about nothing to no one. Sometimes a song comes along that I have a hard time getting through without having my heart touched....without knowing that this song is me....this song is my life. One of the songs that I find particularly relevent in my life with Andrew right now is a Matt Redman song called "Blessed Be Your Name". Originally I liked the beat... It was catchy.....It sounded great turned up loud in the van. Then I began to listen to the words just a liitle bit closer.... have you every really thought about some of the words you are singing....Let me share with you what I think about when I sing this song........

BLESSED BE YOUR NAME IN THE LAND THAT IS PLENTIFUL
WHERE YOUR STREAMS OF ABUNDANCE FLOW,
BLESSED BE YOUR NAME.

....how lucky we are....we are so very Blessed....yes, Andrew has endless medical issues, day to day life is unpredictable, Melissa has got a life time illness to live with, we are walking a parents worse nightmare....twice over in many ways......but we are so very Blessed. We lack nothing.

AND BLESSED BE YOUR NAME WHEN I'M FOUND IN THE DESERT PLACE,
THOUGH I WALK THROUGH THE WILDERNESS,
BLESSED BE YOUR NAME.

.....we are so often dealing with change and grief with the unknowns of what is ahead for Andrew. My life is that of a nurse along with mother, 24/7, it never stops. When I do get time away, the mental aspect of it is still there. We feel like we are roaming the wilderness of uncertainty and terrible fear as to what may lay ahead.....yet I MUST bless His name. I CHOOSE to bless His name.

EVERY BLESSING YOU POUR OUT I'LL TURN BACK TO PRAISE,
AND WHEN THE DARKNESS CLOSES IN LORD STILL I WILL SAY,
BLESSED BE THE NAME OF THE LORD, BLESSED BE HIS NAME.

....those Blessing we are given we will give back to Him.....that includes our children.....their healths..... our future...sometimes darkness will creep in....yet, I will make a CHOICE....a choice to Praise.

BLESSED BE YOUR NAME WHEN THE SUN IS SHINING DOWN ON ME,
WHEN THE WORLD IS ALL AS IT SHOULD BE,
BLESSED BE YOUR NAME.

......those days when Andrew' is home...when the hospital is a distance memory....when he is "well"....when he plays basketball or hockey outside with the kids....that is when the world is as it should be.....that is when it is a much easier choice to Praise Him.......

AND BLESSED BE YOUR NAME ON THE ROAD MARKED WITH SUFFERING,
THOUGH THERE IS PAIN IN THE OFFERING,
BLESSED BE YOUR NAME.

....did you hear what I just said...though there is PAIN in the offering....God knows how hard this is for us......God knows what it is like to watch your son suffer.....He has gone through it.....I have a feeling that knowing that HIS son was going through it all to save mankind didn't make the pain of watching His son suffer ANY easier....There is huge amounts of pain and tears and fear with where our lives are and where they are going.....yet it is my choice to Praise. I grieve, I hurt, I fear.... but I WILL PRAISE....

So when this song starts up on a Sunday morning... you might see 3 sets of Boettcher children's eyes on me (they all look at me because they know it is one of my favorite praise songs) Now, you will know a little bit of what my heart is singing....."

I decided last weekend, after puchasing Matt Redmans new CD and hearing the background to some of the songs on there, that I wanted to try and let him know how his song has been very meaningful in my life. I sent an email to his booking address ( I know silly but heh.......) Sharing the journal entry with him and just to say thank you for doing what you do.....Well Monday morning I woke up to this in my inbox.....

Hi

Thanks so much for your powerful and profound email. We are so
encouraged that God is using this song - but more than anything
inspired by your heart attitude in these days. Hi to all - especially
Andrew - and thanks once again for getting in touch.

Warm regards,

In Christ,

matt

.........I was touched that he took the time to respond. A little funny.....I told Matthew after school that I had an email from Matt Redman......he looked at me and said "ya right, and I got one from Brittney Spears!!" LOL

Anyhow, it was a nice little suprise and I think I can share it hear as it is a password protected site right now so I feel ok about sharing an email text here.

Hope everyone has a wonderful weekend and blessed Palm Sunday.

Thursday, March 22, 2007 9:40 PM CDT

Andrew's surgery yesterday went very well. The only glitch was that the OR's were 2 hours late so instead of 1pm he didn't go into the OR until 3pm. The surgeon said that the new VAD was inserted easier than he expected. A nice change! He was awake but drowsy this time in ICU for recovery which was great. We left a little after 6pm. We came home briefly and went to Langley for the night. He spent most of the night sleeping. He was sore and still is at the insertion site of the VAD (in his neck). I checked with his pediatricia,n today when I had to take Melissa to see him, and he suggested we try a Demerol dose. That certainly made him more comfortable and he is now watching a movie in bed. He will take 4 more days of Flucanazole and then he is done with this course. There are many unanswered and unsettled plans in terms of what to try next for his gut issues that are likley contributing to the infections. It has been a long haul. Andrew was unwell for several weeks prior to picking up on the yeast issue. In retrospect, I wish we had done cultures sooner as I think the yeast was there for a while. His pediatrician said to me today that it has taught him that my instinct is paramount in keeping on top of Andrew's issues. A good two weeks before the first fever and positive cultures I told him I was a bit concerned he had yeast due to the way he was just not "well" even for Andrew. However, there was no fever. We have now learned to listen to that instinct straight away, even if the "proof" is not there.

We are hopeful, if he continues to recover, that he may be well enough to try going to school again on Tuesday!

I have just read a wonderful little book called Holding On To Hope by Nancy Guthrie. Nancy lost 2 children in their first year to a genetic degenerative disease. Her book is a study of Job put into the context of her struggles. It is not only for those suffering through health crisis or death of a loved one. It can be applied to any type of suffering in your life. Let me share just a little but I really recommend you look for this book....I found it at the Vancouver Public Library.


"Trusting God when the miracle doe not come, when the urgent prayer gets no answer, when there is only darkness-this is the kind of faith God values perhaps most of all. The is the kind of faith that can only be developed and displayed in the midst of difficult circumstances. This is the kind of faith that cannot be shaken because it is the result of having been shaken"

There is a wonderful quote in her book by a man named Rabbi Heschel that reads "Faith like Job's cannot be shaken because it is the result of having been shaken."

In closing for tonight I want to share a special scripture. It is from the Message and I think, that at this point in time, it is going to be our Family Mission Statement.....

"We are pressed on every side by troubles, but we are not crushed and broken. We are perplexed, but we DON't give up and QUIT. We are hunted down, but God never abandons us. We get knocked down, but we get up again and keep going....So that the life of Jesus may be seen in us" 2 Cor. 4:8-10

Wednesday, March 21, 2007 11:20 AM CDT

I just wanted to send a quick update to let everyone know that Andrew should be getting his new port in at 1pm today. I have to get ready to go. He will spend a few hours in ICU again and then go to Langley for the night. Pray everything goes well.

PS Check out the new home page photo and also the pictures on the photo page. These were taken this week during the kids Spring Break. During a break in the rain we actually got down to Crescent Beach for an hour.

Saturday, March 17, 2007 8:16 PM CDT

Happy St. Patrick's Day.

Andrew seemed to have a better day today. He had a quiet morning and then this afternoon he went to see the Wiggles.

Andrew loves the Wiggles. 2 years ago when they were here Andrew got to go back stage and meet them and have photos taken. That was hard to beat. Today the show was good and he enjoyed himself although grew tired towards the end. He was in a regular seat instead of using his wheelchair for seating and he grows tired very easily when he isn't supported in his chair. We used his oxygen to try and keep his colour and energy up so he would last the whole show. I have to say for preschool entertainment, I really enjoy the Wiggles. The are so personable and look like they just love doing what they are doing. I hope that the photo page has a few photos from today. One is Andrew before the show, one is just now at home, he is worn out and the other is the Wiggles in their big red car!

Last night we were able to take the older three kids out bowling and for ice cream after our night nurse arrived which was good. She was very helpful as Andrew's line in his arm was leaking alot and we couldn't figure out why. We were able to rig up a better dressing and put Andrew's arm onto a board and that seemed to be successful in stopping the fluid leak.

Andrew had the blood cultures drawn yesterday and we should know something by Monday morning. His pediatrician is going to call and get results from his vacation which is awesome. I tried the surgeons office to see if they had a feel for Wed. or Thurs. if all was going ok and they said they would call back. Well must be nice to finish your day at noon on a Friday as I tried back and they had gone for the weekend. Hopefully I'll know something on Monday. I'm hoping that Andrew will put up with the one in his arm until then as he really hates it.

We aren't going to go away this week. We will try and do some fun stuff around here between the appointments and phone calls and things.

Friday, March 16, 2007 10:31 AM CDT

It is Friday morning. Andrew came home yesterday morning after a night in Langley. Things went ok. He did normal Andrew stuff overnight but being in the hospital was helpful for one night. We were up and out by 8am. Today we have to have blood cultures done from his arm. This won't be fun. He has a long IV line in the arm which they can do cultures from, he had an iv in the other arm for surgery and he has nearly no veins in that arm so I don't know where they are going to get it from. We will attack that today anyway after I talk to his doc this morning.

Today Spring break begins. We aren't really sure what we are doing yet. It depends on several factors as to whether we stay here and try to do some day stuff or go to Whistler for a few nights. We really don't know which is better right now. Either way the weather is supposed to be very wet this week.

I should also find out today if it is looking like Wed. or Thursday for his reinsertion. IF the cultures from today are negative. If they aren't we begin investigations to find out where the yeast now is.

Wednesday, March 14, 2007 4:03 PM CDT

We are home for a few hours until we go out to Langley for the night. Prayers were answered and we were able to get Andrew's fever down by morning and the procedure went ahead. I feel better not the line is out. They have stitched an IV line in place in his forearm to last until the new line comes in next week hopefully. His recovery was ok. He took a long time to wake from anesthesia and needed his bipap setting upped during that time as he was having obstructive apnea episodes even on bipap. He woke and is just now starting to not sound drunk! We will go to Langley after dinner just for the overnight. We'll let the nurses run his flurry of meds so I can rest. Last night with his high fever, high heart rate etc and then having to get up at 5am to be at the hospital took it's toll and I'm beat. I'll update tomorrow when we are home.

Alison

Tuesday, March 13, 2007 11:40 PM CDT

A bump in the road.

Andrew's surgery to remove the infected port is scheduled for 8:15am tomorrow morning. Tonight at dinner time Andrew has come down with an obvious cold and has spiked a high fever that will not come down. After a page to his pediatrician, we went up to the ER to get, yet another, round of blood cultures drawn just in case he now has a bacterial infection in his blood also. And we took a urine in for culture also. Now we really need your prayers. Andrew needs this line out. I think once we get it out and on the road to replacing it he will feel much better.
We need to pray that the anesthesiologists will not stop the procedure due to the fever and cold. We are unable to use Motrin tonight for his fever as it causes clotting complications and his pediatrician doesn't want to give anesthesia any more opportunity to say no. So please pray that we get the go ahead and that Andrew does ok with the procedure and recovery. He will go to Langley for the night tomorrow. We started an IV antibiotic tonight on top of the antifungal that he was on already just in case.

Alison

Tuesday, March 13, 2007 11:17 AM CDT

Let's see if I can update the page today without deleting it after typing the whole thing.....

Andrew's cultures from arm and from line on Friday were still positive for yeast. We knew the one from line would be, we were hopeful that the one from arm would not be. We are awaiting a time in the OR tomorrow morning. Yesterday and today the ORs were jammed so Dr. Blair, Andrew's surgeon, called last night to say that he has all intentions of doing it on Wed. morning. There is some debate as to whether Andrew will stay at Children's for the night under the ICU team or if he will go to Langley for the night. It is something that we are likely not going to know until after the surgery is done.

**We have a favor. If you live locally and you think that you could give Martin a ride home from Children's tomorrow, no idea what time yet but likely late afternoon, IF Andrew needs to stay out there for the night would you please email or call us today. We are trying to figure out how to get everything arranged as easily as possible and I would need the van to stay out there with me.

Also, if someone from boys club wouldn't mind picking Aaron up and dropping him off that would be great as we aren't sure about timing tomorrow night **

We will continue to treat with the Flucanazole at home after the line is removed and redraw cultures on the weekend. If those cultures are negative we will aim for a reinsertion around next Wed. as his surgeon is going to be away over the weekend after that. If the cultures are positive then we must begin much more serious investigations and treatments and that would be done in a hospital.

We were really hoping to go to Whistler for a couple of nights at the beginning of next week if possible. We are still hoping, if things work out, to be able to get away for two or three nights anyway before the new line goes in. We just take the IV pump and everything with us. It is Spring Break next week for the kids so we don't want to 'waste' the whole week.

Melissa has an appointment today with our ped. to go over her diabetes sugars, as they have been totally whacky recently, and also to get the results of the asthma testing she had done a couple of weeks ago.

Please pray that everything goes smoothly and efficiently and, above all, that the yeast issue will be taken care of with this removal and med.

Alison

Friday, March 9, 2007 2:08 PM CST

Thank you everyone for Aaron's birthday wishes!! I think he had a great birthday!! He seemed very happy. After a rough year for him we really wanted him to enjoy his day and I think he did.

Now, the plan.....

The yeast identity is still unknown. Our pediatrician spoke with Infectious Diseases yesterday who were ok with him remaining on Flucanazole for the weekend while we await identity. We will go and have cultures drawn this afternoon from his line and from his arm to compare. They basically know the line will still be positive. If the peripheral cultures are positive too then we need to search more for looking for where the yeast is hiding in his system. Either way we will get his line removed at the beginning of the week sometime. Unless he gets sicker over the weekend. Then they will take it out right away. When the identities are back we will know if we can remain on Flucanazole or if we have to step it up and use Amphoteracin. If he needs Anphoteracin he will be in the hospital. It is quite a nasty little drug to give. If his peripheral culture is positive also then they will likely put him in the hospital Monday and start Ampho. while they look for yeast hiding in his body (and of course remove the line). So if he reamins stable, which the flucanazole seems to have done, we will be able to remain home until Monday continuing his IV therapy here.

Alison

Thursday, March 8, 2007 10:09 AM CST

I have no new information yet other than we should have the yeast ID today hopefully then more decisions will be made.

I am here for a different reason!!

TO WISH OUR WONDERFUL SON AND BROTHER AARON A WONDERFUL 11TH BIRTHDAY!!!!

Aaron had a difficult year but has done amazing the past few months and is blossoming once again. We are so proud of him as a brother and a son!

Wednesday, March 7, 2007 11:50 AM CST

Wed. evening update: We received a dose of flucanazole for Andrew at the hospital today. Apparently microbiology told our pediatrician that they thought they would have a yeast species id'd tomorrow. Then he will call infectious diseases and our surgeon to set stage 2 of the plan into action. We will know more tomorrow.



Quick update: just received a call and Andrew is growing yeast in his blood. We now await a plan, most likely for surgical removal of the line and antifungal meds. I will update when I know more.

Monday, March 5, 2007 6:23 PM CST

A quick little update. Andrew did quite well over the weekend on his antibiotic and we thought he was on the mend. Late yesterday afternoon his fever came up a bit and we were alarmed but not super worried. This morning he woke up with a very high fever, shakes etc. He was acting as he does when he has positive blood cultures. I paged his doc at 7:30am. He made arrangements for blood cultures to be drawn, his meropenum to be continued until Friday and, because this fever spike has occured after nearly 3 days of antibiotics, he ordered a second broad spectrum antibiotic to be given for two days until we have results back. He is resting in bed watching some videos that the kids picked him up over at the video store this afternoon. What a crazy turn of events. Please lift him up in prayer and pray that whatever is causing the fevers would go away. Pray especially that this is not another systemic yeast infection or we will have to have the line removed again. I'll update when I know more.

Friday, March 2, 2007 6:09 PM CST

I can't believe it's March. I especially can't believe it with this ridiculous weather we have been having this week! Snow, no thanks!

Things have been very busy and hectic here the past week or so. I will try to be brief. Monday we had an appointment with the metabolic specialist, Andrew's pediatrician and ourselves. We went over some issues of Andrew's that are getting worse or are needing some work. We will start to give him artificial tears as he has a real problem with dry eyes. This is due to the Riley Day Syndrome. I don't think he is going to like them at all but we will try. They also are going to follow up on his bone density scan from the summer as no on seems to have any type of result. They want to make sure his back pain isn't anything that find on there. Andrew will get a referral to hematology to try and pinpoint the reason for his low hemoglobin/ferritin levels even with iron infusions. Andrew was supposed to have an overnight for bipap adjustments on Tuesday night but he came down with a bad cold so it has been postponed for two weeks. We also met with the GI on Monday and Andrew's ped. was finally able to get him to give us a plan for the sepsis spells. We are treating him as if he has bacterial overgrowth in his gut. This means gentamyacin IV (we picked this up from the pharmacy yesterday-only $355 for one month) form but through his gtube twice a day for a month then flagyl twice a day for a month then do the cycle again. This will take 6-12 months to determine if this is going to be useful or not. They are hoping by squashing the bacteria in his gut he will be less likely to translocate into his bloodstream as he has been doing. We see Andrew's urologist in May and will talk to him about a revision to Andrew's vesicostomy that puts it higher up in his diaper or has some type of collection device on it.

Last week Andrew had his motorized wheelchair "fitting". He loved it. It will take a while to get a hang of the driving but he did well for the 30 min he tried it. We also will have to order a medical chair as well for him. From what we understand the At Home program will cover the electric chair but they won't cover the manual one so we will have to approach Variety Club or someone to assist in the cost of that.

Currently, on top of the cold he got this week, he was having fevers for the past 4 days. Yesterday I figured it would be wise to get urine and gtube cultures done as he never gets fevers with colds. They weren't high enough that made me think he was septic though(bacteria in his blood). I made arrangement with his ped. to get blood cultures drawn today if the urine and tube was negative. Well, the doc called this morning and Andrew's urinalysis was really positive. We are awaiting culture results to know what bug but we started his Meropenum this morning.

Saturday, February 10, 2007 11:32 AM CST

I am so glad it is Saturday. This past week was a bit of a wild one (again)

We went under construction for the big enveloping project on our townhome. So Monday-Thursday the whole back half of the house was under scaffolding and demolition. Nothing like sitting in the house and hearing chainsaws breaking apart the fences and stucco!! Then yesterday we had 4 of the 5 back windows replaced! We were supposed to be done at the end of the day and just the two downstairs, however, they showed up at 8am and wanted to do the 4. It was a madhouse. They were crowbarring out the back sliding door, while I was taking calls from Andrew's pediatrician and nursing coordinator, someone was at the door for me to hem their curtains and I was desperately trying to get Andrew and all his equipment (and the dog) out of the house to my mom's so that he wasn't around during the rukus!! Can you say Calgon......

Today (hopefully) things will be much calmer!!

We had to do another TPA dose this week due to resistence in Andrew's line again. While there I was looking at a poster on the IV units wall that showed IV drug incompatibility's. We have always known that Meropenum can't run with Andrew's IV solution as he has potassium in it and they conflict. I am looking at this chart and see that potassium is not compatible with valium either. I bring it to the nurses attention as this is something that has never been mentioned before. She calls the pharmacy who, after investigating, finds out the valium, potassium and meropenum are all incompatible with each other. They aren't like cement in the line (like our experience with bicarbonate and potassium in the ICU!) but they do leave a residue when they mix in the line. This then causes a slow buildup within the line itself. As these meds are all IV we are working at a solution with his pediatrician to have a seperate line set for those meds that need to run with a non additive IV solution. Confusing I know! However, this will hopefully solve the problem with the resistence in the line which is awesome! His pediatrician brought home some new IV solution to use when we have to run these particular meds so I was able to run over and pick it up from his house last night. That way we are prepared in case.

His other meds such as Solucortef etc. are fine running as always.

Andrew's vesicostomy has been prolapsing a ton this week. Unfortunately when that happens he is more prone to UTI's. We took a sample in Thursday night and it is showing white cells etc. but culture results aren't available yet. As he isn't too sick we will wait before starting any treatment.

Andrew's ped. is trying to organize a meeting with the GI doc, himself and us right before the joint meeting with metabolics later this month. Andrew had the test for bacterial overgrowth done back in January, and the GI doc, being as he always has been, is not communicating with anyone what the plan is. So good old Dr. W decided he needed to sit down and tell us. The GI is responsive to the idea and we will hopefully get that appt. confirmed this week.

Melissa had to do peak flow readings for 10 days this past week to see if she is suffering from asthma. So after the 10 days I game the readings to her doc (same as Andrews) and he started her on a daily inhaler right away as the readings are too low. She will go for the Pulmonary Function tests still later this month but he says her peak flow readings alone confirm that she is suffering from a low grade asthma that is exasperated when she is competing in basketball and swimming. He also said that when the asthma is under control her blood sugars will hopefully be easier to manage also as the inflammation in her body due to the asthma (lungs) can cause a bit of a system reaction I guess with her sugars.

Anyhow, got to go and clean up the post construction mess. This was nothing compared to later this month when they tear apart the whole front of the house!!

An early Happy Valentines day to all!!

Saturday, February 3, 2007 5:15 PM CST

Andrew completed his week of antibiotics yesterday. It looks right now to have been a success. Hopefully for more than a week or two. He had a busy week this week. Monday we had to go for a wheelchair assessment. He is getting alot of back pain and is complaining multiple times a day of pain. The arm and leg pain made a good improvement with the Gabapentin, which means it was nerve pain. The other back pain must not be as it isn't responding the same. So we are trying to see what we can do. They measured up his wheelchair and it is just getting too small. To make it short the plan is to go on February 20th and have him try a power chair ( I know, I'll warn everyone to put their shin pads on before we let him out!! : ) He will then have a new "medical" chair ordered also. He is really only well enough to use the power chair about 30-40% of the time. But they are ok with that. We are excited for him to gain a little independence. The medical chair will be used when he is unwell and should be able to better handle his oxygen, monitors, pumps etc when we need to move him. The process will take a while.

Then Tuesday Melissa saw our pediatrician. He is fairly certain she has a low grade asthma that is always there and that is exasperated by exercise. She is waiting for pulmonary function tests to assess her lung capabilities. Based on what she described and listening to her breath he is near certain this is what we are dealing with. She reminded us this weekend that January 26th was her 2 year diabetes anniversary!! I can't believe it has been two years already!!

Wed. Andrew had his appointment with the pediatrican. We were going to have a quiet day until we had to go but things happen. His line became nearly clotted off so we had to rush out to Langley to get something called TPA put into his line to bust the clot. It appeared successful. We then made a real quick stop at Walmart to pick up the latest Lazy Town DVD for Andrew and then headed to appointment. It went well. Just a buch on planning, adjusting meds and figuring things out. Then we finally got to go home.

Thursday was quieter. Andrew actually went to school for a couple of hours. We are using oxygen on him a bit more at very low levels when he is recovering from illness or just isn't quite as strong. It seems to help to keep him a bit more even planed. So he used it at school for the first time on Thursday. His aide said he was more focused and calm than she has seen him for a long time. Very interesting. We will have to watch and see if using it more consistently helps to bring his baseline back up a bit again.

Friday had Martin home with the same flu/cold that Matthew and Aaron missed days for last week. He is feeling a bit better now but, boy, do I notice when I don't have Martin fully able to take some of the Andrew duties, especially during the night.

Today has been quiet. Thank goodness. Aaron got invited to the Monster truck show downtown and will probably come home deaf but I'm sure he'll have fun!

Well we signed Kody's adoption papers today. So we now officially have our 7th family member. He is officially
"Kody Bear Boettcher"!!

Have a good week-and hopefully we will too!

Saturday, January 27, 2007 10:22 AM CST

Just a quick little update at the beginning of a very busy weekend.

Andrew's urine culture and g tube swabs were positive for two different bacteria. Staph at his gtube site and enterococcus in his bladder. We started him back on Meropenum last night.

Today Melissa has 2 basketball games and Matthew is in Chilliwack for a basketball tournament also. Crazy days.

Kody is settling in really nicely and has discovered the joys of the Crescent Beach dog park!

Alison

Wednesday, January 24, 2007 12:36 AM CST

Well, the first part of my update is to let you know about our newest 4 legged family member. As I mentioned in the last update we were going to trial a dog at the house for the weekend to see how things went. Well Kody (previously named Buddah-how horrible)settled in as well as we could have hoped. He is a keeper and if there is any problem we find with him then we shouldn't look for a dog at all because he is great. He is only 12 months old so some obedience school etc. are in his future but he is going to be a fun and welcome addition to our home. Andrew's medical pumps and noises don't bother him in the least. The IV pole doesn't worry him, infact, Martin had to push him out of the way with it the other day because he wouldn't move when we needed to go by. I will try to put a photo on the photo page. He is lab x with Cattahoula Leopard Dog.

Andrew is struggling a little bit this week. I think it is just his normal crisis issues. He has been real tired the past few days and having a lot of tummy and back pain. He is going to see his regular doc next week for a visit so hopefully we can start to figure out why he complains of his back hurting so often.

He goes to see his metabolic specialist of Feb. 26th along with his pediatrician. Those visits are always good to make sure that planning and treatment options are unified amongst everyone involved.

Having the dog is good in that it is also "forcing" me to get out for some fresh air during the day while Andrew is cared for. I am by no means a lie around the house and do nothing person. However, this is having me get out and spend some time for me in the fresh air which is a good thing.

My email devotional this morning was incredibly poigniant and applicable to myself and to everyone really. I thought I would share:

MY PURPOSE IS TO DISPLAY THE GLORY OF GOD


by Suzanne Benner

"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life" (John 9:3 ).

When Jesus' disciples saw a man who had been blind since he was born, they assumed it was the result of sin. Jesus quickly corrected their misunderstanding with the statement above from John 9:3.

God's intention to display his glory in this man was planned before the man was born.

You see, no one had ever heard of a person who was born blind being given sight. Thus when Jesus healed him, it would be clear that the miracle was something only God could do.

Though the Pharisees questioned the miracle, the event transformed the man himself. His life became a megaphone proclaiming what God can do.

The man born blind isn't the only person whose life has been orchestrated in order that it would be a platform for the work of God. God has a purpose for each one of us. Your whole life has been planned and prepared to be a series of opportunities for God's work to be displayed.

Hardships, trouble, short comings, handicaps are all suitable circumstances for God's power to be revealed in your life.

Musical talents, academic ability, technical aptitude, creative potential when used for God are also ways God exhibits his glory through your life.

~God make me aware of the ways that You desire to display Your works in my life. Teach me to be obedient and humble, allowing Your glory to be revealed.

Tuesday, January 16, 2007 6:41 PM CST

Hello all. It has been nearly a month since the last update. I apologize. No news is basically just that - No news.

Christmas wasn't bad and everyone seemed to do well. It was busy though. We have been having a run of challenging weather here on the West Coast that is causing some problems that we aren't accustomed too.

Andrew has remained line infection free for about 5 weeks now which is great. We had his Hydrogen breath test done this week but have yet to speak with his GI about the plan now that is done.

Andrew has had what appeared to be thrush in his mouth twice. Right at Christmas and this past week. We treated it with Nystatin this time but his swab was negative so it is hard to say if it was yeast or not. We will swab again if it comes back again.

His baseline, how he is on a daily basis, has dropped over the past few months. It might be weather related, it might be his disease, it might be his adrenal insufficiency we don't know. We just watch for some direction.

We have a little bit of news. We are in the process of adopting......




A dog that is!!!! We are doing a home trial this weekend with a sweet sweet dog that I will tell you all about if everything goes ok this weekend. We need to ensure that it doesn't cause Andrew any difficulties with his health etc. and Melissa too. We will proudly introduce you to our new addition next week if all goes good. The kids are very excited. The debate in the house is what his name would be....Andrew wants to call him PLUTO.....he is being outvoted so far!!!

Please say an extra prayer for Melissa. You all know she is Miss super athlete. She swims like a fish, plays rep basketball etc. Well during her last few basketball games she has been experiencing some chest pain and shortness of breath. I emailed her pediatrician last night and he thinks she should be checked out for Exercise Induced Asthma. She has an appointment with the GP next week and then with her pediatrician in Feb.

Have a good week.

Wednesday, December 13, 2006 10:31 AM CST

This round of antibiotics is helping, once again, and Andrew appears to be improving. He is fighting a cold at the same time so it has slowed down his recovery somewhat. He has been home from school all week but MAY go for a little bit on Friday we will see how things go. It did end up being another bowel bug that grew in his blood. Unfortunately, because we had to treat this infection, his bacterial overgrowth test is now postponed until the first week of January. Once that is done we are hoping to take some steps to try and cut down on the bacterial translocation infections he has been having.

I still have so much Christmas shopping to do and am feeling the time and pocketbook crunch with less than 2 weeks to go!!!! Where does the time go. Being housebound with Andrew since the weekend has been hard as there is still a lot to do.

My root canal tooth gave me increasing problems over the weekend until two nights ago it was really hurting bad. I talked to the dentist yesterday and he restated me on a much stronger antibiotic as he feared there may have still been bacteria trapped way down. Well, less than 24 hours after starting it I am already noticing a fairly large difference and can now at least touch the tooth without it feeling like it is exploding. I think I may be on the mend at last!!!

A good week to all.

Monday, December 11, 2006 7:52 PM CST

I "subscribe" to a Women's Daily Devotional that comes via email each morning. I usually sit and have my coffee, check my email and read the devotional each morning. This is todays devotional and it seemed worthy of sharing with all of you.....

*There is a weekend update on Andrew in the journal history if you haven't read of his weekend's challenges*


GOD WITH US IN EVERY SITUATION


"Don't be afraid for I am with you. Do not be dismayed, for I am your God. I will strengthen you, I will help you. I will uphold you with my victorious right hand" (Isaiah 41:10).

One of the names given to Jesus by the prophets and by the angel is Immanuel: God with us. (Matthew 1:23)

If God is with us, why do bad things happen? Like a war, a tsunami, hurricane Katrina, a sudden job loss, incurable illness, a divorce. Have you ever asked this question? We seem to think that if we live right, none of these things will come to us. But is this realistic?

Look at the first Christmas 2006 years ago when Jesus came into the world. These words describe the event:

political unrest, an oppressive Roman regime...a teenage couple far from home jostled among strangers, tired and hungry, no room in the inn...a young woman in severe labor pains, no doctor or midwife nearby, no bed to lie down on. Can you think of anything more frightening?

God did not shield Mary and Joseph, the chosen couple, from hardships. The first Christmas was anything but perfect by our standards of comfort and ease.

As Christians we'll have our share of trouble. Jesus promised us this: "In this world you will have trouble. But take heart! I have overcome the world" (John 16:33).

It's when everything caves in and our securities crumble, we learn to depend on God. In our need we call out to him and we experience him in very practical and real ways.

~Thank you for your presence with me on good and bad days. Because you live within me I have peace and strength and energy and wisdom and all that I need for this day.

Sunday, December 10, 2006 10:58 AM CST

Quick update 11am Sunday: Andrew's doctor just called and he is indeed growing another bowel bug in his blood....once again it has grown very fast. It is promising that we are on the correct med but will find out sensitivties tomorrow.


** We have a special little request. Andrew loves getting mail. Everyday when the mail comes he wants me to give him "his mail". It would be great if Andrew's mail would be more than just the "junk mail"!! If you would like to brighten Andrew's day by mailing him a Christmas card please send us an email and we will send you our mailing address! Andrew would love it if he got some Christmas cards just for him!!**

We have always said things can change quickly in our house and change again they did. Andrew continued to go up and down through the end of the week. We did have the pleasure of bundling Andrew up and taking him to the White Rock Players pantomime Friday night. He actually did quite well and watched most of the show. He thought it was funny when there was a firework and the fairy appeared. Actually all 4 of the kids enjoyed it. It was a first for them. Martin and I thought it was great to find something everyone could enjoy. Unfortunately, yesterday early morning Andrew's alarms kept sounding off and we couldn't figure out why his heart rate and oxygen saturations were bouncing all over the place. A couple of hours later Martin went in to change Andrew and he was burning up with fever. The very fortunate thing is Melissa had plans with one of our pediatricians daughters yesterday. I was supposed to take them to some scrapbook shops. So we called to change the plans with her and I was able to talk to Andrew's doctor and get the requistion for the blood cultures and antibiotics done very efficiently. Other than a problem with the hospital here closest to us that caused me to have to drive to Langley hospital to get the meds, things went ok. He certainly began to get worse as the morning went on and it was reassuring to get the meds going. We are currently waiting on blood culture results. We should hear something later today or tomorrow. This will delay the test for bacterial overgrowth that we were supposed to do on the 20th as he needs to be 3 weeks antibiotic free. So yesterday turned out to be a bit of a crazier day than anticipated. Melissa did end up getting together with her friend still so that was good.......gave me a chance to go over how the local hospital failed us once again with Andrew's doc too. Thank goodness Langely took their usual wonderful attitude of "we'll do anything for Andrew" and came through for us once again. Last night we had our annual Christmas party at the complex we live in. The kids are all bought a special gift by Santa. Andrew was very excited about going but, unfortunately, with being unwell could clearly not go. We were able to ask Santa nicely to make a home visit and he did. I will try and attach a photo. (check out the photo page for a photo) Andrew was very happy he came!!!

So, this is not an easy time to have Andrew unwell. He is already looking a little brighter this morning. As you all know things are so busy at he time of year. To add to this, on Friday I had to have the second root canal in as many months and the recovery has been quite painful. Please pray for:

Andrew to clear the infection or whatever it is that has
made him take a turn. That we are on the correct antibiotic if that is what he requires.

That the hydrogen breath test can easily be rescheduled.

That the other kids won't miss their Christmas activities due to Andrew keeping one of us tied up all the time. We really want to be able to do the simple things, like spend time doing Christmas baking and looking at the lights and all those basic "back to roots" Christmas activities.

That our family would be blessed with a peaceful and "healthy" Christmas time.

That my root canal discomfort would pass so that I don't need to keep taking med for pain

**Our prayer for you is that you would cherish the simple things this Christmas. That you would see past the busyness, the shopping, the chaos and that, above all, you would remember the reason we celebrate is the birth of a baby King in a stable 2000 years ago. Also, that you would hold those you love dear and cherish time spent together far more than glitzy gifts and fancy food. Please just spend time with those you love and tell them so!

Love The Boettcher Family

Tuesday, December 5, 2006 8:15 PM CST

Well it was longer between updates than I had anticipated. Alberta was great. It was cold......and I mean very cold. However, there was far more snow here when I came home than was in Calgary or Edmonton. I had a great time spending the weekend with my dear friend and shopping like crazy for Christmas at West Edmonton Mall. I can now say I have shopped that whole mall!!! My feet will never be the same.

Andrew had been doing ok. He is struggling this week with crisis spells. We are not sure what the origin is as he doesn't seem to be fighting any particular infection. One of the real problems he is having is he can't stay warm. Today he spent the day on my bed watching TV bundled in blankets with the heat on and with several pairs of socks and he was still cold. It is all to do with his inability to regulate his body temperature properly now.

Last week we went to see Andrew's GI doctor about all the infections in his blood that he has gotten that are bugs from his bowels. The reason is something called bacterial translocation. The bacteria seeps through the bowel wall into the blood stream. It is apparently something that kids with FD are notorious for. His GI wants to do some testing later this month and we will see if antibiotic therapy could perhaps help.

We have been emailing a famous doctor in the US who specializes in FD research. He is recommending we try some vitamin supplements with Andrew. A particular type. No this isn't some fluff suggestion. He is a medical doctor and it is found that in disorders where metabolism is involved that certain compounds can help if they are geneticlly missing. We are trying to get a hold of the particular compound that we need but it is available only in the US and then is hard to find so we are special ordering it.

Andrew is on week 3 of Gabapentin for his neuropathic pain. We are still waiting on any positive results but were told it would take a minimum of 3-4 weeks to see any effect so....

Tomorrow Martin and I have a meeting with Andrew's primary physician just to go over planning stuff and to have a chance to sit down and talk.

As everyone knows, this is a very busy time. We are trying to do all we can to have a slow and calm Christmas season and just want to focus on spending time together doing the simple things.

Monday, November 20, 2006 6:57 PM CST

Happy Birthday to the best Daddy in the world!!!

Today is Martin's birthday and we wish him a year of health, happiness and joy!!

Just a quick little update, Andrew has a gtube site infection again. I think that we got it nice and early and the oral antibiotics will work for a change. The culture is growing out two types of bacteria already. The antibiotic that we started yesterday seems to have started to work though.

We have also begun the slow process of getting Andrew onto a drug called Gabapentin. It is for his neuropathic pain (pain caused by the nerves). You start slow and build up so we will not see results for the next few weeks.

Other than that things are plodding along. I have to go get ready for Christmas in November at Church tonight. I will try and update more later in the week but before I go away for the weekened.

Friday, November 10, 2006 11:29 AM CST

Andrew is doing not too badly. He recovered nicely from his dental surgery and was able to enjoy halloween to the best of his ability. He has been having alot of problem with neuropathic pain over the past couple of weeks. That is pain in his arms and legs and back that is from nerves not from muscles etc. It has caused him lots of problems at school also. We are hoping that the metabolics doctor will have some insight. Dr. W, his pediatrician, thought he had read about kids with FD having neuropathic pain but was unsure so we are checking with the specialist. I will send him the information so when he comes back from being away we can hopefully find something to help Andrew. Two weeks today I am heading off to Calgary for the weekend. I am so excited to see Christine again and hope to do all my Christmas shopping in one weekend. I am a little nervous about being far away from Andrew for the weekend. I just hope that he is stable and all goes well for Martin. Today is the schools Rememberance Day assembly and Melissa and Aaron both have performances so I am off to watch shortly. I am excited that I have been able to find some time recently to do some quilting again. It is one thing I love to do when I have some time to myself during the day. I am in the process of making Aaron a quilt. Melissa and Andrew have got one already and Matthew's got all his fabric for his. so his will be next.

Alison

"The eternal God is your refuge, and underneath are the everlasting arms" (Deuteronomy 33:27).

Something special I have seen many times. I want to share it with you. It is long but worth the time.

To You, My Sisters

Many of you I have never even met face to face, but I've searched you
out every day. I've looked for you on the Internet, on playgrounds
and in grocery stores.

I've become an expert at identifying you. You are well worn. You are
stronger than you ever wanted to be. Your words ring experience,
experience you culled with your very heart and soul. You are
compassionate beyond the expectations of this world. You are
my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite
sorority. We are special. Just like any other sorority, we were
chosen to be members. Some of us were invited to join immediately,
some not for months or even years. Some of us even tried to refuse
membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in
obstetrician's offices, in emergency rooms, and during ultrasounds.
We were initiated with somber telephone calls, consultations,
evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were
pregnant, or we had just given birth, or we were nursing our newborn,
or we were playing with our toddler. Yes, one minute everything was
fine. Then, whether it happened in an instant, as it often does, or
over the course of a few weeks or months, our entire lives changed.
Something wasn't quite right. Then we found ourselves mothers of
children with special needs.

We are united, we sisters, regardless of the diversity of our
children's special needs. Some of our children undergo chemotherapy.
Some need respirators and ventilators. Some are unable to talk, some
are unable to walk. Some eat through feeding tubes. Some live in a
different world. We do not discriminate against those mothers whose
children's needs are not as "special" as our child's. We have mutual
respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever
materials we could find. We know "the" specialists in the field. We
know "the" neurologists, "the" hospitals, "the" wonder drugs, "the"
treatments. We know "the" tests that need to be done, we know "the"
degenerative and progressive diseases and we hold our breath while
our children are tested for them. Without formal education, we could
become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get
what our children need to survive, and to flourish. We have prevailed
upon the State to include augmentative communication devices in
special education classes and mainstream schools for our children
with cerebral palsy. We have labored to prove to insurance companies
the medical necessity of gait trainers and other adaptive equipment
for our children with spinal cord defects. We have sued
municipalities to have our children properly classified so they could
receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that
means walking away from it. We have tolerated scorn in supermarkets
during "tantrums" and gritted our teeth while discipline was
advocated by the person behind us in line. We have tolerated insane
suggestions and home remedies from well-meaning strangers. We have
tolerated mothers of children without special needs complaining about
chicken pox and ear infections. We have learned that many of our
closest friends can't understand what it's like to be in our
sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To
Holland" and Erma Bombeck's "The Special Mother." We keep them by our
bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically
handicapped children to the neighbors' front doors on Halloween, and
we have found ways to help our deaf children form the words, "trick
or treat." We have accepted that our children with sensory
dysfunction will never wear velvet or lace on Christmas. We have
painted a canvas of lights and a blazing Yule log with our words for
our blind children. We have pureed turkey on Thanksgiving. We
have bought white chocolate bunnies for Easter. And all the while, we
have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how
we'd make it through another day, and gone to bed every evening not
sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in
Italy. We've mourned the fact that our trip to Holland has required
much more baggage than we ever imagined when we first visited the
travel agent. And we've mourned because we left for the airport
without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing.
Our love for our special children and our belief in all that they
will achieve in life knows no bounds. We dream of them scoring
touchdowns and extra points and home runs.
We visualize them running sprints and marathons. We dream of them
planting vegetable seeds, riding horses and chopping down trees. We
hear their angelic voices singing Christmas carols. We see their
palettes smeared with watercolors, and their fingers flying over
ivory keys in a concert hall. We are amazed at the grace of their
pirouettes. We never, never stop believing in all they will
accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is
hold tight to their little hands as together, we special mothers and
our special children, reach for the stars.

By Maureen K. Higgins

Tuesday, October 31, 2006 9:22 PM CST

We have a new computer so our email list that we use to notify everyone when the page is updated is gone. Please email us if you would like to be put back on a new email list.

Happy trick or treating! Andrew is now sitting up on his bed, watching a movie, eating a *couple* of chocolates from his treat bag. He had fun. He dressed up as a cowboy and went up to the doors and declared *I'm a cowboy....wee, haa* He didn't think trick or treat was interesting enough. He did around our townhouse complex and a few extra houses but quickly got tired. The others are still out roaming with Martin.

Andrew's dental procedures went well yesterday. It took just under two hours. They filled and capped two of the molars and were able to fill and seal the other one and didn't need to cap it, so that was good. Post op they made some changes to his bipap settings to hopefully make them more effective. We were home by about 1pm and then we stayed home for the afternoon but decided to go out to our local hospital just to sleep overnight in case there were troubles. He did have some pretty bad desaturations, even on the bipap, however, we had to rig up oxygen with nasal prongs under his bipap mask as I forgot to bring his oxygen attachments with me. Overall his night went pretty well for Andrew and we left early and were home by 8am this morning. We did do a urine sample while there as I have a sneaking hunch he may have the start of a UTI again. Hopefully I am wrong.

On Monday we have his IEP at school which should put in to place the goals and ideas we have for him for the school year. Things have not gone smoothly so far in that area due to staff changes etc. So hopefully this will get things moving. IEP's are supposed to be in place by the end of September not the beginning of November.

Our metabolics specialist has begun working on getting together the team of specialists for a planning meeting. Unfortunately, the amount of work and coordination this takes is huge and it will likely take several months.

We are starting Andrew on a vitamin E supplement called tocotrienols. A researcher in the US who is working to find a cure for Riley Day syndrome has trialed these vitamin E derivitives and has said that they show promise in helping kids with FD to avoid crisis. We have emailed him about Andrew a couple of times and have been shocked and so pleastantly suprised that he has responded. He has even helped us in establishing a dose to acheive over the next three weeks and then would like us to email him when we get there for help with a further plan. Very cool.

Thank you for your prayers for Aaron during the past several months. We are finally making head way with the issues that he was having and we are so grateful. Unfortunately, it was something that was heartbreaking for him and hard on the whole family. We would ask that you continue to pray that he would continue to do better.

Melissa and Matthew are both well. Matthew turned 14 just a couple of weeks ago and, I have to say, as far as teenagers go, he's a good one!! .....so far!!!

Now we can update you on Martin's weekend adventure. Last Tuesday Martin and his sister decided to fly down to Arizona on Friday to suprise his other sister and brother in law to be, by arriving in time for their wedding this past weekend. I think that Karin and Odoch were very suprised. Martin was able to fly out early Friday morning and return very late Sunday night. He had a great time. He loved Scottsdale and is telling me we have to go some time. It is the first time Martin has ever taken a weekend away kidless and especially Andrewless, ever....so it was a well deserved break and I think the break in routine was very refreshing for him. *Congratulations from all the rest of us Karin and Odoch. We were sorry the rest of us couldn't be there also.*

In closing, let me share something from a devotional type book that I have been reading. It is from a book called "Sometimes Miracles Hide"

Unfailing Mercy:

"Oh give thanks to the Lord, for He is good! For His Mercy endures forever. To Him who led his people through the wilderness, for His Mercy endures forever " Psalm 136:1, 16

Our difficulties are always matched by God's mercy. We are never left alone to fend for ourselves.
We all have "wilderness" experiences at some points in our lives, but we are never alone. We are always surrounded by the immeasurable, merciful hand of God.
Sometimes God gives us a gentle push of courage; sometimes He mercifully numbs us so we don't experience the full intensity of our pain; at other times He carries us when we cannot take another step on our own.
From the many letters I've received from the parents of special needs children, I've learned that God provides His people with superhuman strength to survive excruciating pain and suffocating disappointment.
Even in the desert, God's mercy is there. The trials of this life will not last forever. Frail, imperfect bodies will be made perfect and whole. Tears and defeats will dissipate. Mourning will be turned to joy.
May we be found faithful until the end. May we ever rely on His abundant mercy. May we allow His faithfulness to beam through us and lighten the burdens of others. " Bruce Carroll

Friday, October 27, 2006 9:46 PM CDT

Andrew's dental surgery is scheduled for Monday at 8am. We need to be at the hospital at 6:30am! He is scheduled for 2-2 1/2 hours in the OR. He will then recover in a side area of the ICU called the Special Needs Unit. There they will make a few adjustments to his bipap settings to make them more helpful. If we feel the need we will go to our local hospital for an overnight just to be cautious.

He had a pre op check up with the pediatrician today and he thought he looked well. We are starting to receive feedback on the different letters he wrote to specialists asking for input into his infection issues. Unfortunately, the first two letters hold some conflicting info in them so we will have to wait and sift through the information when the last letters come in. Overall, Andrew has had a pretty good week.

The weekend here is very busy with several different activities on the go for many of us. Matthew is on a youth retreat from tonight until Sunday afternoon, Melissa is here but spending time with a friend tomorrow (we're going apple picking) then spending the night and her house tomorrow night. Aaron is at a birthday party this evening (Melissa and I got a girls movie for tonight!) He will be home later tonight. And Martin.........well, we'll fill you in on that one later!!

Alison

Friday, October 20, 2006 9:46 PM CDT

Well, our week has improved...it couldn't have gotten much worse so........ My root canal was done and completed on Wed., all of our colds seem to be resolving, Andrew's infection appears to be under control and so on...

Andrew will be done his antibiotic course on Sunday so that is good. Hopefully we can get him back to school Monday.

The nursing staff at our local hospital had an inservice yesterday on Andrew's bipap. Some of the ICU staff from Children's including Andrew's respiratory doctor, came out to do the teaching. It was good for them to learn. I sat in and listened.

Now for my little bit of good news. I am heading away for a weekend in the end of November. My lovely friend Christine is flying me out to Calgary for a weekend. We are taking an overnight jaunt to West Edmonton Mall (I've never been there!) so I am very excited and looking forward to spending time with Chris. Melissa is not impressed. In her words, "you're going to the biggest mall in Canada and you're not taking me??!!" You bet I am!!!

Tuesday, October 17, 2006 3:51 PM CDT

Andrew's night at home last night went well. He slept good and was stable and continues to show improvement today. A Relief! I slept well also which was a much needed thing. However, this morning I woke to a horrible stomach bug. I think it was short lived as I (think) I am better now. I'll let you know after I've finished my cup of soup!! However, I must say that I was bordering on anger when I had arranged care for Andrew this morning so I could go to my ladies group at church and instead ended up needing it to just rest. I must say that this morning I was feeling like enough is enough - this is ridiculous. Tomorrow morning my root canal is rescheduled so let's hope that goes ok. Between that, the horrible cold, no sleep, Aaron's sleep problems, Andrew's day to day care and then his septicemia this weekend.....add to that my morning and I must say I was ready to scream!! Calmer now however and the soup is tasting good!!

The thinking in terms of Andrew's ongoing repeat blood infections is that his intestinal tract is "breaking down" in simplistic terms, much like his other systems. This causes a "leaky gut" type of issue where bacteria will just seep through the wall of the intestinal tract and enter the bloodstream. Of course, this is not good at all. He has had 3 sepsis episodes in the past 2 1/2 months which is alot. Previously he was averaging one every 6 months roughly. The reason they think the cause is what it is is that the bugs he's growing hardly ever enter the body through an iv line but are located directly in the gut. If he was growing skin bugs in his blood it would be likely it was coming in from the outside, however, this is not the case with him. We originally thought it was due to his gut moving so slow however his doctor doesn't think so. If he is right, we don't think there is anything that can be done. It is something we will have to react to and deal with as it comes up. There is no way to put a patch on the intestinal tract. Anyhow, we are also starting to move forward on a care conference of all Andrew's doctors to come up with some better laid out plans for his medical care in terms of all his different system involvement. Thank you for your continued prayers and thoughts.

Monday, October 16, 2006 4:12 PM CDT

Just a quick update as I need to go rest for a bit. Andrew was recovering nicely from his skin/"bladder" infections last week. Saturday afternoon he became very very sick in a very very short period of time. It is the fastest onset we have seen and we almost had to call 911. We took him to hospital and he was in from Sat. until today. He is now home on 7 more days home IV antibiotics due to another bloodstream infection. I'll explain why he seems to be getting them so much later. Please pray that his recovery continues and that the antibiotics continue to be effective and things are managable at home.

Alison

Friday, October 13, 2006 9:26 PM CDT

Check out the photo page for a few updated pictures from the retreat this past weekend at Stillwood. We had a lovely time. The weather was really quite perfect and the kids all had so much fun. Sleep wasn't easily had and I must say I was thoroughly exhausted by the time we came home. We did things like card making, wall climbing, bike riding, square dancing. It was great. Anyone that has been to Stillwood also knows that we (well, Martin and I anyway) gained 5 pounds each with all the good food there was! The week has been a little crazy. I had been having problems with jaw pain for a few weeks. I went to the dentist to discover I have an abcess and need a root canal done. So on antibiotics I went and came down with a horrible cold the next day. So the root canal has been postponed until Monday morning. Hopefully this cold will let up by then as it is a nasty one. Martin and Melissa also have it. Andrew had a few issues creep up this week and is on some oral antibiotics right now for an infection around his vesicostomy stoma and gtube site. Luckily this time we caught it real early and because he wasn't super sick we are able to do oral antibiotics instead of IV providing he doesn't get worse. The other thing we found out this week was that the new integration teacher at the school (the person in charge of the kids with Special Needs for our school) got called up to the Peace Corp and he's gone to Africa for 6 months. Very frustrating as myself and our nursing support coordinator spent a few hours informing him on Andrew's medical issues and needs and now we are going to have to start from scratch with someone different again. Andrew has been getting alot of pains in his arms and legs the past few weeks and we aren't sure why. We are treating it with hot water bottles. He looks like a little old man when he goes to school with his hot water bottle over his hands. This Thursday the local hospital that cares for Andrew a lot is having an inservice on Andrew's bipap machine. It is really good of them to still take Andrew even though he has bipap some hospitals wouldn't. At Children's he can't be on the ward, he would always need to be in the SNU. However, they are willing to learn so a RT from Children's is coming out to teach the nursing staff and respiratory staff how to use Andrew's bipap and especially how to vent oxygen through it appropriately. I am going and will do a quick information exchange on Andrew's Riley Day diangosis and what that entails. We are still scheduled for the 2 hours of dental surgery for Andrew on the 30th so please keep that in your thoughts and prayers.......hmmmm, couldn't they just put me out to do my root canal at the same time!!

From another Caring Bridge friends website. How incredibly true and a reminder that we all need to hear:


~"So does God answer prayer? Of course! Does God answer our prayers always in the way we would like? Of course not! God, who is our Father in heaven, like any loving parent, may answer “Not now” or even “No.” And sometimes, like a parent, God weeps over what happens to his children. Jesus’ teaching on prayer is for courageous souls. He says to us, “Hang in there,” for prayer is not some magic lantern. Prayer is communion with the God who loves us, and who never stops loving us. Prayer is the confidence that God always comes through, even in ways we cannot comprehend. Prayer is trusting that no matter how bad things get, God is good – all the time.
Reverend Dr. Gary Nicolosi

Monday, October 2, 2006 9:57 PM CDT

I just thought I would put a quick little update on the site tonight. I have a few quiet moments so......

Andrew's week has gone quite well. He began his therapeutic riding again last Thursday. He really loves riding his horse. His horse this time is Shasta and she is quite lovely. We are still figuring out the financial details of him going for another session but are moving ahead with faith that it will come together by Thursday.

I had a visit with Andrew's primary doctor last week to go over alot of maintenance things that don't get addressed whenever we speak and Andrew is having a health crisis. We covered alot and what was supposed to be a quick 15 minute touching base appointment turned into a very long 1 hour appointment filled with a lot of emotion and soul searching. Hearing that, especially now we have a clinical diagnosis, alot of the things that are happening with Andrew can't be helped and we must anticipate them getting worse, is something that my head knows it is far harder for a heart to accept it though. I can't tell you enough how having this particular doctor in Andrew's life the past 8 years has been a blessing beyond words. We could not have managed without the ongoing support, medical care and guidance he gives. He cares for our whole family not just his "patient" which makes him a very special find in the medical field. The heaviness of our conversation that afternoon dragged down my outlook over the next few days. However, I have my head back up now and on we go. I was doing the study tonight for my Tuesday morning ladies group which is tomorrow morning. It is a book by Carol Kent called "Six Secrets of a Confident Woman" The book is not about self confidence but God confidence and I am really looking forward to it. I want to share with you something out of the first chapter that I read tonight and I found it incredibly appropriate and touching after my week last week. Carol is talking about a time her father was very ill and in the hospital and it was Thanksgiving weekend.

"We gathered at the hospital and lingered next to Dad's bed, watching each labored breath. As dinnertime came, we drove down to the Holiday Inn and sat at a big table. We were in the valley of despair. My confirdence in God was eroding. As we glanced at each other in this unfamiliar place, Mother reached out her precious work-worn hands, indicating that we were all to join hands. We obliged. Then quietly, in this public place, Mother's alto voice could be heard singing softly, and we found ourselves joining in with tears streaming down our faces.

"To God be the glory, great things He has done.
So loved He the world that He gave us His Son.
Who yielded His life in atonement for sin,
And opened the Lifegate that all may go in.
Praise the Lord, Praise the Lord, Let the earth hear His voice,
Praise the Lord, Praise the Lord, Let the people rejoice,
O come to the Father through Jesus the Son,
And give Him the glory- great things He hath done?

As I gaszed into Mom's eyes, I reailzed she was resting in God's Love - it was definitely God-confidence, not self confidence. We couldn't fix the problems. But we could choose to confidently trust our God of Love. Through that song, our Gentle Shepherd was leading us to higher ground."

People often ask "How do you do it?" "How do you manage?" I honestly have to say I don't know. It is not my strength, for my strength was gone a very long time ago. To some small degree I guess it probably is God Confidence. As no one could walk this path on their own two feet. When my God confidence is shaky or circumstances stand in the way of seeing clearly I hope that there will always be something, such as a song like in the story, that reminds me where my confidence comes from and opens my eyes up to it again. This past week, after the appointment, it came in the way of music, which is often the way God reminds me of His presence. It also came in the reminder of the promises in the 23rd Psalm, several times over. No, not the "walk through the valley" verses but "The Lord is my sheperd..He makes me to lie down in green pastures. He leads me beside the still waters. He restores my soul (that He does!)......Surely goodness and mercy will follow me, All the days of my life; and I will dwell in the house of the Lord. Forever. "

This weekend we are off to Stillwood for the MCC Supportive Care Services Family Retreat. It is a wonderful weekend of respite care for the kids, Andrew had so much fun last year!!! Family fun for us all. We are looking forward to it. The other thing to note is that I am hoping to get away for a weekend with a dear friend in November. I won't share the plans yet until they are solidified. However, I am hoping that it will be a wonderful weekend of friendship and fun.

To our friends John and Christine and Family, Our thoughts and our prayers are with you this week and next as we know that your hearts must have a hard time celebrating Thanksgiving. You are very special to us and always will be. We will remember Ronan with you during our Thanksgiving celebrations.

Friday, September 15, 2006 11:49 AM CDT

It has been a while since our last update. Sorry about that. For the most part no news is good news where we are concerned. Melissa and I had a great weekend in Kamloops for her provincial swim meet. She did great and came away with a medal that she is very proud of. We were only home one night before we packed up the vehicles and went up to Whistler where we spent a wonderful 11 days. The kids had an amazing time. They rode bikes every day and for Mountain bike loving kids like mine Whistler was the perfect place to be. The highlight of Matthews week was when my brother came up and took him up on the Mountain Bike Park (the big one) he had an amazing time. He was able to do two days up there with my brother and one of those days one of his good friends was with us also which made it even better. Andrew did so incredibly well while we were there. He played alot, got lots of fresh air, went to the park, took a liking to tennnis, (his version of tennis is stand in the court knock the ball over the fence and make Daddy run after it and bring it back to do it again.) He loved floating around in his turtle boat that he got for his birthday and the kids spent alot of time building a big sandcastle with him at one of the lakes one day. The temperature was perfect there for him as it was warm but a mountain breeze was almost always there to keep things agreeable. We also were able to play with his valium doses for crisis a bit while we were there and discovered the sooner we give him the dose the better. It was a positive learning experience. The one downer was that Aaron took a fall doing a jump on his bike in the dirt bike park on the second to last day there. He ended up going to the Whistler clinic and getting xrays and a splint. Luckily nothing was broken and his arm is back to normal now. (In your prayers for us, please say an extra special prayer for our Aaron, he is going through some struggles right now and could use all the extra prayer support he could get!) We arrived home just before the long weekend and spent the time getting school supplies and stuff done. Andrew and the others integrated back into school really well. Andrew has a new SEA although she was his back up before so he is familiar with her. He is having a few adjustment issues as he doesn't understand why he doesn't have Ms. Lee anymore and why he is in a different classroom. We are very happy with his placement for this year though. He remained strong through the first week and a half of school. Unfortunately, things do change on a dime with Andrew, and this Wednesday he spiked fever and we drew cultures. Sure enough he had positive blood cultures. In talking to the surgeon a while ago and the central line nurse at Children's both have said that when kids have really bad gut motility like Andrew it is very common for there to be this internal transfer of bacteria from the gut to the bloodstream. There isn't a lot we can do to prevent it if his gut doesn't improve. Anyhow, it worked very well that Melissa was seeing the pediatrician that afternoon so he had cultures drawn and had a dose of antibiotics withing 5 hours of starting with the fever. This early intervention, along with the use of his valium and steroids early in his illness, seems to make his illnesses far less hard to manage. (We say that hopefully as this is only the second one since the changes) He was also started on a daily dose of steroids now for his adrenal insufficiency. In seeing the very positive effects of treating him during illness, it was decided that trying daily doses may help also.

About a month ago we noticed Andrew's back molars were turning brown. Last week he had a visit with the Dental docs at Children's and sure enough he has 3 bad teeth that need to be filled or capped. Due to his delays etc. this will be done as a two hour dental surgery on October 30th. The other unfortunate thing was that Andrew had a bone density scan and a 24 blood pressure monitoring session scheduled for yesterday morning. Well seeing as he came down sick the day before we had to postpone them. Luckily they were able to reschedule both for two weeks from now. These are both being done because of his dysautonomia diagnosis and also because one of the complications of Familial Dysautonomia is osteoporosis (I believe) Even though Andrew does not genetically have FD they treat him as if he does, therefore, they are testing for all the other complications these kids would have.

Hoping that he is well enough to get back to school next week. We wish a good weekend to all.

Thursday, August 17, 2006 9:47 AM CDT

Melissa and I are off to Kamloops. Yesterday we celebrated August 19th a few days early. A very happy birthday to our Amazing Andrew and we hope and pray that his special day was all that he dreamed of in his little mind!!! Above is a photo from todays celebrations.

Saturday, August 12, 2006 10:04 PM CDT

Just a quick little update. We ended up not having to spend the night at the hospital on Thursday night which was great. We went on Friday morning to get the oxygen adapters etc. put on to Andrew's bipap machine and had some quick teaching on how to use it and that was that. Nice and straight forward! Just the way I like it.

Andrew had real bad diarrhea a week or so ago and, unfortunately, it has caused a bladder bug to take route. Luckily we caught this very early. He was started on an IV antibiotic today. It went nice and straightforward also.

On Wed. we are going to celebrate Andrew's birthday. It isn't until the 19th, however, I am going to be at the Provincial swim tournament with Melissa in Kamloops so, seeing as Andrew doesn't really understand how a calender works, Wed. is actually August 19th in our house and it is now only 4 more sleeps until his birthday!!! Melissa and I will be back from Kamloops Sunday, we go up on Thursday. We will just be home for a night or two then we are going up to Whistler for about 10 days. We are very excited about a nice long break together. Usually we don't get away for that long in one stretch. It should be great.

Wednesday, August 2, 2006 10:33 AM CDT

**I just wanted to add a huge thank you to two very special families that have purchased airconditioning systems for us. We now have a built in one for Andrew's bedroom window and a portable to follow him around the downstairs. This combination should work real well as the portable one is quite large and moving it up and down the stairs after Andrew would be a bit arduous. Now, he will have one in his room and one every where else he may go.....Very special thanks and blessings to both of these special families!!! Alison and Martin


All is fairly calm here. Which I am always a little afraid to say as things change very fast. Andrew finished his antibiotics on the weekend and has been doing pretty well since then. We have been trying to get him outside and active during the cooler weather as it is supposed to get hot again next week. He has had a lot of fun playing with a jumbo blow up soccer set that I picked up at the store on the weekend. The soccer ball comes up to his mid section!! Then we went and bowled a game on Monday and yesterday we went to see "ove the hedge" at the theatre. The last movie I took him to was last summer and his attention span hasn't improved any in a year. Still spent 90f the movie trying to keep him focused. I got a call yesterday that his oxygen attachment is in already. We were expecting a month and it took just over a week! He will go in to the ICU unit next Thursday night for an overnight just to get the system set up for when he needs it. This weekend is Melissa's regional swim meet so we are wishing her tons of pinky luck (she will explain) She has swum a provincial qualifying time in her fly about 12 times this summer. If she does that in finals this weekend she will attain her goal of going to Provincial in Kamloops in a couple of weeks. Her relay team is also very fast and she will likely be able to swim at provincials with them. Will update again soon.

Monday, July 24, 2006 10:13 PM CDT

Today we had an appointment with Andrew's home ventilation clinic doctor. He is also the ICU doc that Andrew has when he is over there. We discussed the trial run of valium etc. He is going to make some alterations to Andrew's bipap settings and equip him bipap to run oxygen through it. That way, if the valium ever suppresed his breathing he would be as safe as we could make him. He is a real funny character. He looks like he should be growing hemp on Saltspring!! (for all you locals!)

We also had some blood work done for metabolics. They are banking some of Andrew's blood for future DNA testing and he needed to get electrolytes etc. done today as we had to change his IV fluid for the duration of this antibiotic he is on.

Melissa and Matthew were at a youth event this afternoon from church. There is different activity's every afternoon this week for them so they will be busy. Aaron went with some friends from church to the waterslides. He was glad as he was going to have to come to the appointment with me if he hadn't got the invitation. So he was very happy! We will press on through the heat of the week. Martin is getting very creative with his fan and bucket of ice placement around the house!!

Sunday, July 23, 2006 9:19 PM CDT

Our week ended up being more eventful than we had thought. It was supposed to be a relativly quiet week with Melissa at camp and Aaron and Andrew going to VBS with Matthew helping. That went well for Monday then late Monday night Andrew got very sick once again. We opted to put him into the hospital on Tuesday afternoon to trial using valium for his crisis management and for IV antibiotics. Well the valium worked as well as we could possibly have hoped. Usually it takes a combination of IV gravol and ondansetron to help his stomach crisis when he is ill. Even then it doesn't always help. The IV valium seems to have been incredibly effective. He required the IV valium every 4 hours for about 20 hours then we stretched it out to longer. During that time he needed IV gravol only once to top it up. It is very encouraging. This stems from the theory that the crisis' that come from the autonomic nervous system are actually a type of autonomic seizure. Not the same type as the other kind of seizure Andrew has, these are different. Anyhow, his cultures did indeed grow positive for bacteria in his blood. This one seeped through from the bowel into his bloodstream they believe. Nothing we can do to prevent that unfortunately. As for the valium, as with anything new with Andrew we will continue to experiment under close watch by his doctor obviously. Tomorrow he has an appointment with his ICU doc. He is the one that is in charge of Andrew's bipap etc. He is an interesting character!!

Monday, July 17, 2006 4:02 PM CDT

Wow, busy week here. Melissa just headed off to camp again. This time she is at the church camp that the kids go to every year. It means 3 trips to Cultus Lake and 3 trips home over the summer to get all of them up to their respective weeks and home again. She will be home Friday evening. It was a busy weekend with a swim meet, camp drop off, visitors and Martin and I spent the night "away" on Friday night. This week is VBS and Matthew is a helper and Aaron and Andrew are attending. I am helping as I have to stay pretty close by for Andrew anyway.

Emails are still flying between myself, the metabolics docs and Andrew's pediatrician as they try and figure out where to send his blood to have it further tested to hopefully narrow down an exact disease name. We have been told it is a disease that is a mirrow image of Familial Dysautonomia (Riley Day Syndrome) as I stated in the previous update. However, due to the fact that we are NOT Ashkenazi Jew and he has a slight response on one test, we can't say that it is exactly that. He holds 98f the characteristics. We are trying symptom management techniques that work with FD as they (the scientists) believe that it could also help alleviate some of Andrew's symptoms. We still may never have an exact name. However, we are closer as we now are to tell people that he has a Familial dystautonomia like syndrome.

One of the problems that is far harder for Andrew than previous years is his inability to regulate his body temperature properly. Imagine being very hot and unable to sweat or being cold and sweating. These are the types of issues Andrew is having. However, it affects him alot more than that. It messes up his whole system and causes crisis symptoms. We have just had his pediatrician write a letter to the funding agency that Andrew is associated with to see if they will fund airconditioning in our home to keep him more comfortable and healthier. HOwever, this will take time. We are always being asked if we "need anything" or "how can we help?" Right now we have a need for a portable airconditioner or even a single room airconditioner. I don't know if you have seen the forecast for this upcoming weekend but at this point temp. are supposed to reach the high 30's. Way too hot for him. So we are putting out an appeal to those that are local. If you have or know of someone who has a portable airconditioner that they are not using (probably not too likely if the weather does whatr it is supposed ot!)would you let us know? We are looking to borrow one. Portable would be best as we will be able to take it to Whistler on our vacation time also if that is the case. Please let us know if you happen to have one we could borrow!!!

Thanks

Tuesday, July 11, 2006 10:49 PM CDT

Will update later.

Saturday, July 1, 2006 5:07 PM CDT

It was a very eventful week. The temperature has been very warm here the past 7-9 days or so. Andrew is unable to regulate his body temperature anymore. Last weekend the weekend was real hot and it caused him to have alot of autonomic problems with regulating his heart rate, breathing etc. On Monday he began complaining of a sore back but nothing too extreme. Monday night at bedtime he began to really get sick to his stomach and was saying his back was really hurting him. We settled him down around 9pm with vomiting meds and ibuprofen and he did go to sleep. Around 1:30am he woke up retching and screaming his back hurt. He wouldn't let anyone touch him or even sit on his bed. He began to breathe with a lot of difficulty and was grunting during each breath. His heart rate was way too high. It was very obvious he needed to be in the ER. We took him to Peace Arch where they called in one of the pediatricians that we know. They drew cultures etc. and we were admitted to Langley to see what was up. While there we were generous in giving him anti nausea meds and IV pain medication. Within 12 hours his cultures from his line were positive. Good thing was the antibiotic that he was empirically started on was from the correct family of drugs for this bug. He ended up growing staph. aureus in his blood which can be very serious. With his steroid support and the other meds he did recover enough to come home on Thursday. He is still on antibiotics for another 4 days. The steroids are a huge help and we are slowly approaching talking about putting him on a daily dose to see if it helps. In a discussion with his doctor this week we talked about the positive effects it has had. He wanted to make sure that it was quite clear that the steroids are a part of symptom management for Andrew and that it is in no way curative of his underlying disease. It is hard to see Andrew suffering more from heat intolerance etc. this year as compared to even last year. I am exceptionally glad that we took him on his trip to Florida when we did as there is no way he would manage the 90 degree days now.

Have a good Canada day weekend. Melissa is off to diabetes camp tomorrow and Aaron is off to a week at our usual church camp. However, it is his first time at sleep away camp. I think I am more nervous than him!!! Should be a quiet week around here! Melissa is continuing to swim her heart out and is acheiving her goals of getting Provicial qualifying times this year. However, I am looking to a week of no 5:45am swim practices while she is gone this week!!!

Wednesday, June 14, 2006 8:29 AM CDT

Andrew has his new VAD in place now. He had surgery on Monday. After a two hour delay waiting for the OR and then about a 4 hour wait for a specialized ambulance team to bring him to our local hospital our day ended up being about 12 hours long. He did well after the placement and had a pretty uneventful night, for Andrew anyway, at the local hospital. We came home yesterday morning and had a quiet day at home. It came down to the wire in terms of getting him on the correct type of meds for his bladder infection. One of the drugs we had put him on on Thursday was correct. However, Andrew's cultures grew a second bug and his doctor was literally calling arrangements for antibiotics for that one as he was boarding his flight out of town. Luckily it all got done and Andrew is on the mend from this round of infections. Today he is even going to school for a few hours. I need the break!

Friday, June 9, 2006 9:50 PM CDT

Well Andrew is scheduled for his VAD reinsertion on Monday morning at 9am. He got the all clear from Opthamology yesterday in terms of there being no yeast in his eyes. So the surgery time was scheduled. He was still sleeping alot this week and not bouncing back like I thought he should. We took in a urine on Wednesday and, sure enough, there are two bugs growing in his bladder. So he started back on IV antibiotics today. We have sensitivites on one bug and hope to have the second by tomorrow morning. We are hoping that one drug will cover both bugs. His IV line that is in his arm is causing some nasty problems with his elbow. He won't straighten his arm and is having a lot of pain in his elbow. Hopefully the antibiotics will help this if there is an infection brewing in there. We would really like this line to last until Monday. He will go to LMH for the night after the surgery. Unfortunately his doctor is leaving for a conference on Sunday and won't be here but he has arranged coverage for Andrew. We will keep you posted. The weekend is busy. There is a swim meet tomorrow and Melissa and us do the Diabetes walk on Sunday. Then Monday is Sugery.

Friday, June 9, 2006 9:50 PM CDT

Well Andrew is scheduled for his VAD reinsertion on Monday morning at 9am. He got the all clear from Opthamology yesterday in terms of there being no yeast in his eyes. So the surgery time was scheduled. He was still sleeping alot this week and not bouncing back like I thought he should. We took in a urine on Wednesday and, sure enough, there are two bugs growing in his bladder. So he started back on IV antibiotics today. We have sensitivites on one bug and hope to have the second by tomorrow morning. We are hoping that one drug will cover both bugs. His IV line that is in his arm is causing some nasty problems with his elbow. He won't straighten his arm and is having a lot of pain in his elbow. Hopefully the antibiotics will help this if there is an infection brewing in there. We would really like this line to last until Monday. He will go to LMH for the night after the surgery. Unfortunately his doctor is leaving for a conference on Sunday and won't be here but he has arranged coverage for Andrew. We will keep you posted. The weekend is busy. There is a swim meet tomorrow and Melissa and us do the Diabetes walk on Sunday. Then Monday is Sugery.

Tuesday, June 6, 2006 10:31 PM CDT

Andrew is doing ok. The good news is that his cultures were negative....means the source of the infection is gone....or at least it appears to be. We continue on the flucanazole until after the weekend. On Thursday he must go to opthamology to get his eyes checked for yeast collections. If that is good then his surgeon is hoping to reinsert a line on Monday perhaps. He is still incredibly tired and sluggish though. I'm just not convinced that he is over this yet..perhaps he is just having a slower recovery. He had another iron infusion today so that should boost his blood counts some.

We are doing the Walk to Cure Diabetes this weekend at the Aldergrove Zoo. We went last year and it was a very positive experience. Melissa is busy collecting pledges so if she hasn't asked you already.....watch out......she'll find you.....If you don't live close but would like to make a donation email us and we will give you a link to a very secure online donation site through the JDRF. If you want to read more about the walk check out www.jdrf.ca

Alison

Thursday, June 1, 2006 9:41 PM CDT

The line came out after a whirlwind trip down to Children's on Tuesday afternoon. The surgeon was waiting for us and things flew. Global TV was following Dr. Blair around for a few hours and filmed Andrew and I talking and walking with Dr. Blair in the ER. Unfortunately Andrew felt horrible and pulled the blanket over his head in his wheelchair and wouldn't emerge. So I don't think they got too much useful footage of Andrew. It should be on Global news tomorrow evening. Should be funny. I had to sign a consent for filming as well as a consent for surgery in the same sitting. We went by ambulance back to LMH after and spent the night there. After the line was removed Andrew already appeared to be improving by the next morning. He's not perfect but things are on the mend we hope. So now there are two scenarios. Tomorrow we are going for blood cultures again. If by Monday these cultures are negative then we will see Opthamology next week to ensure to yeast collection in the eyes. If that is all clear we are hoping (dependant on the OR schedule) to perhaps get a new line in late next week. IF however, these cultures are still positive it is much more serious than we thought. Then he will need a hospital admission for a drug called amphoteracinB. He will also require echocardiograms, ct scans etc to find a source of yeast. Dr. W feels that this type of admission would best be done through Children's if possible as they are set up to do all the testing. So we wait.......I feel like it is forever from now until we know on Monday.

Tuesday, May 30, 2006 3:59 PM CDT

Real quick update as things are moving very fast here. Andrew's cultures from yesterday are already growing yeast. Therefore, the line must be removed. We are heading to the hospital to have it removed this evening then will go out to the local hospital for at least the night, possibly a bit longer, depending on what further treatment he might need.

Alison

Sunday, May 28, 2006 5:02 PM CDT

Well, Andrew's doc called a little while ago. They have not yet been able to ID the yeast type yet. The know that it isn't the most common form of yeast. They do know that, in the lab, it is sensitive to flucanazole. However, we were told that last time and it didn't work so.....

We wait more.... We really have no clue what will end up happening as the week goes on. There is the chance of getting rid of it with this drug, perhaps trying another drug or pulling the line. However much of this will depend upon the docs conversation with Andrew's infectious disease specialist. He will call him once he has the official ID. For now, we continue with flucanazole and tomorrow we need to get more cultures drawn both from line and from his arm this time. To determine if the yeast is just in the line or through his blood stream.

We will keep you up to date......

Sunday, May 28, 2006 11:56 AM CDT

No news is just that.....no news. As of last night Andrew's doc hadn't heard anything further on ID and sensitivities. He was going to call the lab today sometime to check on this.

Thursday, May 25, 2006 9:48 PM CDT

Melissa's appointment went really well. The girl is growing like a weed. She is only 2 inches shorter than me!! Doing well overall.

Now for the bad news. We found out while we were there that both bottles in Andrew's blood cultures are positive for a yeast. Yeast is nasty and hard to get rid of. 18 months ago we fought a yeast infection in Andrew's line for 2 1/2 weeks before we ended up having to have the line pulled and replaced. So....tomorrow we will start him on home IV flucanazole and will wait for ID and sensitivities to come in over the next few days. From there we will figure out what to do. It isn't all that straightforward as pulling the line, when there isn't all that many spots they can put new ones, isn't optimal. However, yeast can not stay and one way or another we are going to have to get rid of it.

We will keep you updated as we know.....

Wednesday, May 24, 2006 9:51 PM CDT

Things can change quickly in our house...

First, the kids ended up staying at Whistler until Monday and then coming home with Martin's sister so we didn't have to drive up after all. They had a wonderful time!! The weekend was very quiet here......take 1/2 of the people in a home of 6 away and things just don't feel the same!! We got some stuff done around the house and we did go out for a casual dinner on Saturday night.

Andrew was doing great, then yesterday evening he suddenly developed a fever. As anyone who has experience with a central line knows, a sudden fever always equals blood work. We emailed his doc last night to make him aware and then spoke with him first thing this morning. He arranged for cultures to be drawn and a cbc to be done from Andrew's line. That is due to a lot of bruising that is on his lower legs right now that we aren't sure how he got. He just wants to make sure his platlets are ok. Anyhow we got that done this afternoon and the culture results won't be ready until tomorrow. Melissa has to see the same doc tomorrow so I'm hoping he may know something then. We ended up having to put Andrew on his bipap for a good part of the afternoon as his heart rate was running rather low. That is due to the stress on his system and his dysautonomia. Meanwhile Melissa still had swim practice this afternoon and both older kids had papers to do and I had a massage therapy appointment!!! ....and Matthew finally decided his hair was too long and wanted me to buzz cut it (can't miss that opportunity - I had to do it)
Anyhow now things slow down for the night ( I hope )Hopefully the cultures don't grow anything but we wait and see.

Friday, May 19, 2006 8:55 PM CDT

Well the van is home. We picked it up late yesterday morning. It is so wonderful. I can't tell you how much easier this is going to make life, especially for me. The chair just wheels in and Andrew stays in it. It's perfect. The kids just love the van now. With the back end on hydraulics and raised and the front end lowered it looks "SWEET" according to the kids. I'll take some pictures tomorrow when we go out with Andrew to show you all how it looks opened up!! Anyhow, we are incredibly grateful to both The Community Living Fund and to President's Choice for blessing us with $45,000 of the 49,000 we needed. Then we have some special Angels who are pitching in to cover some of the remaining amount and to those unknown people we are so grateful!!

The older 3 are up at Whistler for 2 nights with Martin's sister. So we just have Andrew and us here for two nights. How strange is that??!! Tomorrow is our 17th Wedding Anniversary. We are going to sneak out for dinner tomorrow night I hope. The kids will have a ball up there and we will pick them up at Whistler on Sunday. Andrew will enjoy the outing if all is well. He is on his additional 3 days of IV antibiotics to ensure that the bugs are long gone. He is very very tired tonight. They had games day at school today and he participated in some of the games but is so tired tonight. We were just having dinner and I though he was going to fall asleep at the table.

We had some concerns with Melissa last week, in terms of some eye changes that the eye doctor picked up on that could be related to her diabetes. This particular complication doesn't usually show up for years and years but she has had a small bleed in her eye. We notified her pediatrician and her Endocrinologist straight away and she will go to see a Pediatric Ophtamologist so that they can keep track of changes from here on out. HOwever, the Endocrinologist doesn't think that it is likely related to the diabetes but warrants watching. That made us feel a little better anyway.

So have a good long weekend all and no news is good news from us. We are hoping to enjoy a very quiet weekend with only one child......Andrew's doc called for his usual Friday afternoon "check to make sure all is ok before the weekend" phone call, I told him we were going to have a quiet weeekend. He quickly said don't say it, you'll jinx it........So I will say nothing!!!

Wednesday, May 17, 2006 8:25 PM CDT

Hope everyone has a chance to take a peek at the little video montage we put together of Andrew. It is fun to watch Andrew doing normal childhood things. Enjoy watching him enjoy life!!

His eye is almost better but still discoloured. His doc decided to extend the antibiotics for another 3 days to make sure the eye infection as well as the bladder infection have both cleared his system. We were very fortunate that his eye ended up growing a bug that shared the same antibiotic sensitivites that his bladder bug had. Bad luck but good too I guess. He will go to riding tomorrow morning if all is well tonight. Now the big news.......


The van is back!!!! We have an appointment to pick it up tomorrow morning. We are so glad that it is back and ready and not a day too soon. I can't lift that wheelchair in and out anymore. We'll post some photos when it is back here...

Sunday, May 14, 2006 10:52 AM CDT

Happy Mothers Day to all!!! ....

Andrew's bladder is continuing to heal and his eye is holding it's own so that is good. We didn't call his doctor yesterday because it didn't look any worse. He has begun to have a cough so we will see where that leads. .....one hour at a time when it comes to Andrew.

I want to share a link with you. If you are friends from church you would have seen this already. I was asked to speak about Motherhood for the services this weekend. It was taped in the week and I just saw the finished version and it looks quite neat. If you like follow the link below and click on the May 13th video ads and you can watch it. I think they actually did a beautiful job of putting it together. Although I think you always think that you look funny when you see yourself on screen.

http://www.gracepoint.ca/?action=d7_file_download_home&template=video_ads.html&Join_ID=8127#

Saturday, May 13, 2006 10:07 AM CDT

First, Please keep a very special little "internet friend" of ours in your prayers. We have followed little Jacob's story for a couple of years via his Caring Bridge page. They are in Florida and Jacob is one of a set of Triplets who was diagnosed with a very rare form of cancer a few years ago. Jacob's mom amazes me and I gain amazing strength from reading her journal entries and seeing her unwavering faith. Jacob is in some trouble now and his mom asks prayers from anyone who will give them:

http://www2.caringbridge.org/fl/jacob/

Andrew's bladder infection is beginning to resolve. His pee is looking and smelling a whole lot better now. His eye is looking a bit better today also. Which is great because his ped. wanted to add an antibiotic if it didn't improve by this morning. Melissa has a season opener swim meet today we will go to this afternoon. A Happy Mother's Day to all!!

Friday, May 12, 2006 10:04 AM CDT

Happy Birthday Melissa!!!! Our Baby Girl is 12!!! That is so hard to believe. We wish you a wonderful birthday and a fantastic year!!!!
----------------------------------------------------------

Andrew has a bad bladder infection right now. He was started on IV antibiotics yesterday. Also yesterday morning he woke with a badly infected eye. We are hoping the antibiotic that he is on for his bladder may help the eye. He looks like someone has socked him in the eye. We were supposed to see his pediatrician yesterday but were unable to make the appointment. We also received a date for our next appointment with the metabolic specialists. It is June 26th. Andrew's primary physician will be coming once again which is amazing! Anyhow, got to go and continue with the birthday day!

Alison

Saturday, May 6, 2006 3:58 PM CDT

Andrew saw his urologist and had a renal ultrasound this past week. The ultrasound show his kidneys in good shape. I am always suprised I am at how emotional I get when I watch the ultrasound and see two normal looking "kidney" beans on the screen. After seeing what they looked like during renal failure I am in awe and relief every time I see them looking normal. His bladder is continuing to hold urine though. The vesicostomy should cause the bladder to never retain. Andrew does. The urologist would like us to move to catheterizing the vesicostomy 2 times a day instead of 1. We will continue to do the Gentamiacin flushes once a day though. He thinks that, even though Andrew continues to struggle with UTI;s, that this is helping to keep them at bay somewhat and that he would be getting far more if we weren't doing this.

The other thing that is becoming a little clearer is that Andrew's fluid retention that he had a few weeks ago might not have been from steroids but might be due to his dysautonomia. He has had a couple of smaller episodes of the same thing that weren't related to steroid use. Therefore, it is a bit of a wait and see but it is more than likely that this is a new part of Andrew's disease. I have to speak with his doctor about how we will properly manage this when it happens.

The holter monitor that we did a few weeks ago was good. Funny, he didn't have any of his real low heart rates when we did it so we knew that it was likely going to be normal. However, when he was in the hospital two weeks ago he had several episodes of slow irregular rates while on a cardiac monitor. This printed out strips of what we needed so it is good to have that record printed out.

Martin and Aaron are camping on a boy's club campout this weekend. We are hoping the weather will hold for them but it looks kind of grey and chilly out there today.

Some wonderful news, our van is about 7-14 days away from being home. The work on the conversion is complete. It is simply sitting in Phoenix waiting for a truck to bring it home. I can't wait to get it back. It looks like it should be here by around the 15th!

Andrew went to his second session of riding therapy this week. He really loves it. I'll try and put some pictures on the photo page.

Monday, May 1, 2006 5:06 PM CDT

Andrew's weekend went well. He is really attached to riding his little bike with training wheels. It gives me a heart attack though as he teeters back and forth and doesn't have the balance sense to correct himself. He sure looks cute though. The exercise is good for him too! He is still talking about his horse riding expedition last week and is looking forward to this week also. He wants to ride his "worse" as he calls it!

Melissa's swim season is fast approaching and soon we begin the crazy hectic schedule of 8 swim practices a week plus weekend meets. She is very excited about it though. She also goes to diabetes camp the first week of July so she is eager to go there. A friend goes to so that is good.

All 3 kids are signed up for a week each at Camp Stillwood this summer. They absolutely love it up there.

Aaron and Martin are on a father/son camping trip this weekend with Aaron's boys club from church. It will be nice for the two of them to have a boys weekend.

Matthew was involved in a weekend long basketball clinic this past weekend and he really enjoyed it. We are very proud of him as this is the third report card in grade 8 where he has made the "B" honor roll. Good for him!!

Andrew has a renal ultrasound and appointment with his urologist on Wed. so hopefully all will go well. It isn't due to any new concerns but a 6 month follow up.

Well that brings you all up to date on us......bye for now.

Tuesday, April 25, 2006 10:21 PM CDT

Andrew continues to loose all that extra fluid that he had acculmulated during his hospital stay. He is back to being skinny Andrew rather than PUFFY and HUGE Andrew!! He is doing well right now. Although a little on the tired and fatigued side the past couple of days. On Sunday we decided the weather was far too nice and we have far too few days with no outside commitments, that we decided to take a little day trip. We went to Rolley Lake near Mission. We hadn't been there in about 20 years (boy, does that make me feel old) and the kids hadn't ever been there. We took a picnic. The kids played we took a couple of walks. It was so nice. We got home at dinner time and enjoyed a nice barbeque with good friends to finish the day. Andrew has really taken to riding his little bike the past few days. He was unfortunately, more than a little tired yesterday and today afterschool, so he kindof just sat on it but heh, he thinks it's great. Andrew will hopefully begin a 9 session round of therapeutic horseback riding on Thursday morning. That should be nice for him-If I can get him on the horse! We figure that can be his own little special sport as all the other kids are so active! Anyhow, nothing too new to report medically, just plugging away through the week, enjoying the amazing weather!

Alison

PS The new photo at the top is from the Lake on Sunday!

Saturday, April 22, 2006 9:58 PM CDT

Andrew is home. He came home yesterday afternoon after being in from Tuesday. We had him running on steroids IV and his vomiting and pain meds plus he ended up on an antibiotic that runs 4 times a day also. It was busy. In many ways it is very good we were there as there were some unexpected bumps in the road. By Wednesday night it looked like Andrew wasn't peeing real good and was puffy. They paged the on call doc as his pediatrician was off for the night. She ordered creatnine and urea to be done in the morning and also a weight check. She didn't want to do anything else as she wanted to let Andrew's regular doc decide in the morning. Thursday morning Andrew had his blood work done and we weighed him. His admission weight was 24.2 kg. 36 hours later his weight was 26.6 kg. that is about 5 pounds more than when he arrived. By this time his face and feet were visibly very swollen and his blood pressure was slightly elevated. His doc came in and was great about getting stuff done. After having Andrew go into acute renal failure 2 years ago by total suprise, we don't mess around when he does weird stuff like this. To everyones huge relief, his kidney function tests were normal!! That left checking with endocrinology to find out if the addition of steroids could have caused this. To shorten a long story, it turns out that Andrew's dose was a bit high; so we were able to figure that all out. However, in a normal child the steriods should not have caused the type of dramatic response that it did. But, we are talking about Andrew who reads no instruction books. It would appear that for some reason the steroids caused this huge retention of fluid. Yesterday morning as Andrew started to pee more and loose some of the fluid, he was allowed to go home with instructions to return if he puffed up more.

The good news is that the steroids which are for his adrenal insufficiency seemed to make a positive difference in his coping with his illness. He was far more cohesive and "with it" during this spell and he also made a more steady, but slow, improvement. Rather than wild swings between really sick and looking ok. We are hoping that this is a trend that will continue. Hopefully the swelling will not occur next time around. He will continue on home IV antibiotics through Monday night and hopefully things will go well for the rest of the week.

Tuesday, April 18, 2006 1:54 PM CDT

A quick update. We were pleased that we were all home together for the Easter weekend. It was very busy with Melissa's basketball tournament, a visit from the big bunny and family dinners.

Andrew has a UTI. As we now need to do IV steroids as well as antibiotics we are going to go to the hospital for a couple of nights as it is a bit much getting up so many times to change med lines in the night. Hoping that it will just be a couple of days.

We had some very exciting news last night......Congratulations Uncle Odoch and Auntie Karin on your upcoming wedding!!!! We are very excited for you and hope to have a Boettcher family representative or two at the October Wedding!!

Odoch, you are already family to us but we are so excited to officially welcome you into the Boettcher Clan!

We will update when we come out of the hospital.

Friday, April 14, 2006 9:14 AM CDT

Good Morning and a Blessed Easter Weekend to all.

Andrew is just finishing up a 24 holter monitor test. It is basically a portable ECG that traces his heart for 24 hours. It figures though the night before his heart was very irregular and alarming all over the place. Last night things were calm. That is what happens though. These things never happen when you need them to. Oh well, we drop the machine off today but they aren't open so it won't be read until next week some time.

Andrew recovered from his virus at last. We haven't really any idea whether the steroids helped yet. It could take several months before we know. On Wed. afternoon Andrew had a real bad crisis spell that lasted for about 45 minutes. He had incredible pain in his stomach and throat, he didn't make any sense and had a few seizures. It's been so long since we've seen seizures. They don't get easier to see. Yesterday all day he was very tired and miserable so I am hoping today is better. I'm also hoping that he isn't starting to get sick again already.

Melissa has provincial basketball tournament this weekend so we are back and forth to games at one of the University's this weekend.

Saturday, April 8, 2006 9:28 PM CDT

Andrew had his appointment with his endocrinologist on Thursday. He was still unwell from this bug that hit him and he slept the whole 3 1/2 hours we were there. It was decided that Andrew will need cortisol replacement therapy. He is officially classified as having Adrenal Insufficiency. This in no way explains all of his problems. It is very likely a result of the damage being done by his underlying disease. You can read a little bit about Cortisol deficiency here:

www.gosh.nhs.uk/factsheets/families/F010059/index.html

Andrew will not take a daily dose of steroids when he is well right now. We are beginning with steroid injections or Intraveinous steroids during illnesses and crisis. He will drop down to an oral steroid for a little while once he begins to recover from whatever it is that makes him sick at the time. Then they will stop until the next time. We are all set up with the IV supplies, meds and injections that we will be needing. On Friday I met with Andrew's primary physician to go over the plan that is set out so we are all on the same page about what needs to be done. Hopefully this will all go smoothly and without complication.

Andrew has finally begun to feel a bit better with this virus that hit him last week. However, he is still having a few small fevers and his cough sounds pretty nasty. He has been using some extra oxygen during the day sometimes to make things easier for him. He has an IV iron infusion scheduled this week and then he will do a 24 hour holter monitor to check his heart rhythms on Thursday. Busy week.

The van has been gone for almost 3 weeks already.....hard to believe. I can't wait to get it back. Lifting Andrew, his wheelchair and his oxygen tank etc when we went to Children's this week was not easy. The idea of just rolling him into the van is music to my ears (or should I say "back")

Tuesday, April 4, 2006 4:47 PM CDT

**Quick update on Wednesday morning- We started hydrocortisone last night. He will get this during illnesses only for the time being. We see the endocrinologist tomorrow so that works out real well. As of now he is about 18 hours with no fever so we will hope that, whatever it is, is passing. ***

Well, the 24 hour on the blood cultures is negative. This is good. Often, if Andrew has a blood infection, he will grow positive between 12-24 hours. So that is good. They won't say it is totally negative until after 48 hours though. We continue the antibiotics until then. The bad news is he is still very sick. His fever keeps coming back and going really high. This causes him to shake and shiver and have a hard time. It also sends his heart rate sky high. He is still showing the cold signs but I'm not sure if that is it. The only times he usually gets fevers like this is when he has positive cultures, which he doesn't as of now, or when he has pneumonia, which I don't think he does. We will see how the next day goes I guess. He has an appointment at Children's on Thursday afternoon that is very important. It is for his cortisol deficiency. I know his pediatrician has tried to reach this doc since yesterday to see if Andrew shouldn't be on steroids now but he was unable to reach him as of yet. I'll keep you all informed.

Monday, April 3, 2006 4:39 PM CDT

I'm just doing a real quick update as I haven't had sleep since 2 am. Aaron had a cold for a week which added a fever this weekend. He is ok now and back to school but it knocked him on his behind for a couple of days.

Yesterday afternoon Andrew began a fever. It went down with tylenol and stayed down when the tylenol initially wore off. At 2 am his fever spiked up high and we had to use motrin and tylenol to bring it down. At the time he showed no signs of the cold. I paged his doc first thing this morning. We just got back from having some blood cultures drawn from his line and he will go on Ceftriaxone IV while we wait for results. As the day is progressing he is showing more signs of a respiratory bug though. Either one of the two things, bacterial infection in his blood or the bug Aaron had, are going to be hard for him as both are nasty. Please keep him in your prayers and we will update when we know more. We are going to try and manage at home and hope that that works.

Sunday, March 19, 2006 5:37 PM CST

***Check out the new photos above and on the photo page***

Andrew's antibiotics seem to be helping. He is starting to feel much better. He was even running around outside yesterday with his sister. He is really quite unsteady at the moment though. He took a tumble and we ended up running up to the clinic to get his forehead patched up. Luckily it just needed some steristrips and glue stuff to close the little cut.

Today the weather was wonderful. After all the rain we decided to go down to the beach for an hour after church. It was beautiful. The picture above is from today.

The van gets dropped off in the morning by 9am as the truck is taking it at 9:30 to head to Arizona for the conversion. They should have a loaner van waiting for me so I hope everything goes smoothly.

Alison

Wednesday, March 15, 2006 5:33 PM CST

Andrew has two different bacteria in his bladder again. He hasn't been good for a while now with a bad cough etc. but on the weekend we began to think that he was getting another UTI. His doctor is going on vacation tomorrow morning so I spoke with him this morning and he doesn't want to start the IV steroids this time as he isn't here to oversee things. We will do it next time. The only antibiotic that both his bugs are sensitive to is one that is given orally but Andrew has never had it. Thus, his doc decided that,again, with him not being around to switch things over if there is a problem, that we should use familiar meds. So Andrew is on an oral med for one bug and an IV med for the other. Dr. Ward has continued the oral one for 10 days in hopes that he won't get anything else before he returns.

On a completely normal note.....Andrew lost a tooth this afternoon. He called me when I was in the kitchen and said "heh, my toof faw out".......there it was lying on the couch!! Funny, even developmentally delayed kids know that that means the tooth fairy comes tonight and he gets "pennies"!!

The kids have done a bike camp the past 3 mornings and have really enjoyed it. So much so that they signed up for their first mountain bike race for April 1st out here in South Surrey. It should be fun!

Melissa has come down with a real nasty cold. Probably the same one Andrew has had for a while.

We have been starting to plan our vacation this summer. Even if we don't go far (Alberta) it takes quite a bit of organizing for us. It takes arranging for Andrew's stuff to be there and also for oxygen to be available etc. Gone are the days of spontaneous camping weekends!!!

Hope you all are enjoying your spring break.......everyone we know seems to be going or is somewhere tropical and hot right now. I tell you, they sure have the right idea!!

Wednesday, March 15, 2006 5:33 PM CST

Andrew has two different bacteria in his bladder again. He hasn't been good for a while now with a bad cough etc. but on the weekend we began to think that he was getting another UTI. His doctor is going on vacation tomorrow morning so I spoke with him this morning and he doesn't want to start the IV steroids this time as he isn't here to oversee things. We will do it next time. The only antibiotic that both his bugs are sensitive to is one that is given orally but Andrew has never had it. Thus, his doc decided that,again, with him not being around to switch things over if there is a problem, that we should use familiar meds. So Andrew is on an oral med for one bug and an IV med for the other. Dr. Ward has continued the oral one for 10 days in hopes that he won't get anything else before he returns.

On a completely normal note.....Andrew lost a tooth this afternoon. He called me when I was in the kitchen and said "heh, my toof faw out".......there it was lying on the couch!! Funny, even developmentally delayed kids know that that means the tooth fairy comes tonight and he gets "pennies"!!

The kids have done a bike camp the past 3 mornings and have really enjoyed it. So much so that they signed up for their first mountain bike race for April 1st out here in South Surrey. It should be fun!

Melissa has come down with a real nasty cold. Probably the same one Andrew has had for a while.

We have been starting to plan our vacation this summer. Even if we don't go far (Alberta) it takes quite a bit of organizing for us. It takes arranging for Andrew's stuff to be there and also for oxygen to be available etc. Gone are the days of spontaneous camping weekends!!!

Hope you all are enjoying your spring break.......everyone we know seems to be going or is somewhere tropical and hot right now. I tell you, they sure have the right idea!!

Monday, March 13, 2006 1:55 PM CST

Andrew is plodding along. His cough last week got quite a bit worse and we went to the doctors to have a chest check last Tuesday. The good news is his chest was clear. Funny-I don't remember the last time I was in his office for something as simple as a listen to Andrew's chest and look in his ears.......I could get used to things being that simple again. Anyhow, Andrew's cough has still not let up and it has been 3 weeks now. He also may have the start of another UTI. We are pushing to get cultures etc. done early this week as his doctor is heading out of town for 10 days on Thursday. If he needs to be set up on antibiotics it is much easier to do that when he is here. The other kids are at a mountain bike class for the next 3 mornings. Then they have different activities going on in the afternoons. It never fails that the weather is poor during spring break. Hopefully they will keep busy....it is much easier now they are bigger.

Aaron had a good birthday last week. He ended up with 3 birthday cakes over the course of a few days so he was one lucky guy!

We are awaiting the actual date that the van will be leaving. It should be soon. We are so very thankful to all those folks who have offered to help towards the final payments on the conversion. We are so grateful.....we can't say much else except thank you.

Monday, March 6, 2006 9:26 PM CST

**It's Aaron's 10th Birthday of Wednesday **

I thought I would take a few minutes to bring you up to date on things around here. Last week Melissa saw her endocrinologist and she is doing well. She needed her carb count and her insulin doses both increased but other than that she is fine! Her endocrinolgist is now Andrew's also. I spoke with him about Andrew's cortisol results when I was there and they are too low. Andrew's resting cortisol level is about 1/6th of what the bottom end of normal would be. With the ACTH stimulation test it does go up substantially but not quite high enough. The problem appears to lie at the pituitary not the actual adrenal glands. Although he believes the glands themselves are fine that this problem is steming from his nervous system dysfunction and basically the nerves aren't sending or receiving the messages they need to. When the body is stressed the pituitary releases ACTH which is supposed to tell the adrenal gland to make more cortisol, a natural steroid. As this is what our body's need to function. Well Andrew's messages aren't getting there so he isn't making nearly enough. The thing with cortisol is it is absolutely vital to have enough in the system during illness etc. or it can, in extreme cases, be fatal. It is called an adrenal crisis. To start we will try Andrew on IV steriods during his next couple of infections, if this helps and maybe even if it doesn't, he will begin a daily dose of oral steroids to be upped to IV steroids in higher doses when sick or injured etc. This will replace what his body should be making. The endocrinologist wants to bring Andrew in to see him in the next week or so and if he gets sick before then our pediatrician is to page him to get IV steroid doses. Andrew has had a cough that won't give up that is getting worse so we are hoping that it will resolve.

Last Tuesday night we went to a presentation by President's Choice at the Langley Superstore. They are funding $20, 000 towards the conversion of the van. Well we went to the store for the "cheque" presentation and they had cake and balloons. We were so suprised. I am going to try and include a photo.

We will keep you up to date after we have spoken more with endocrinology again. Also, we have heard nothing further on the Mayo blood work but it has only been two weeks.

Friday, February 24, 2006 9:27 AM CST

UPDATE: The sensitivities came in yesterday afternoon to the second bug he was growing in his bladder. We were able to get him switched to a med that will cover both the bugs growing. It is an IV antibiotic done once every 6 hours. We will do that for 7 days. I didn't receive any info on the Cortisol testing so I am hoping to hear Monday.

---------------------------------------
We had a call yesterday from Sidewinders which is one of the two companies that gave us quotes for the conversion. We have been able to work out some of the details for getting the conversion done. Sidewinder will throw a loaner van in for the 6-8 weeks that ours is away for no extra cost. Which is amazing. So we are just about set. They can take it whenever we are ready. The last "little" detail is that our funding leaves us $4,450 short. Incredible when you think about it, as the total cost of the van and the conversion is just over $50,000. The only thing we have left is $4,450. I know to many that would be nothing to come up with, for us it is. So we need you to pray that we figure out the best way to cover that last little bit. The other thing we aren't sure of is if we should get the process going (it is going on a truck to Arizona - Uncle Odoch and Auntie Karin - we trust you'll visit it while it's in Phoenix!! : ) and go on faith that we will come up with the last amount in the time the van is gone or do we wait until we know that we have it. As it is going to take quite a time getting it done the sooner we start the process the better. It was an absolute answer to prayer that they are willing to throw a loaner van in for no extra charge!! That was a huge problem resolved. Now we just have to figure out the last little bit. Basically we need you to pray that $4,450 grows on a tree in our backyard!

Andrew has two different bacterias growing in his bladder. The sensitivities of one of them came back yesterday as being responsive to the broad spectrum that we put him on on Wed. Which is good. We are just waiting on the information on the second one which is apparently a bit of a weirder bug. I was chatting with Andrew's pediatrician last night about the frustrations of not regulating his bowels and that causing the issues with the UTI's. He said that we will have a very hard time finding a med to work properly on Andrew's bowels when his autonomic system is as messed up as his is. He thinks that creative ways around the vesicostomy getting contaminated is the better way to go.

We should also have his ACTH stimulation testing results back by the end of the day (hopefully). That will let us know whether the cortisol reading was a fluke or if he is deficient and whether steroid treatment will help him. If there is a problem, Andrew will see the same Endocrinologist that Melissa sees for her diabetes care. She has her 9 month appointment with him Wed. morning so the timing of that is great. Oh, Melissa registered for diabetes camp. She is going with a friend of hers who also has type 1 from July 2 -8, this is the same week Aaron is at Stillwood. Then she is home for a week before she is off to Stillwood, then there is one week in between when her and Matthew go. Busy summer, 4 different camp trips for the kids plus the usual business of Summer Swimming. I'm tired thinking about it and it isn't even March yet!!!

Tuesday, February 21, 2006 4:23 PM CST

Well yesterday was our important appointment at Children's hospital. First we arrived to have blood work done at 11am. It was specialized blood work. Some is going to the Mayo Clinic nin Rochester for testing the rest is to check up on Andrew's cortisol issues. With the latter they drew blood, then drew it again at the 20 min and 30 min marks. We found out that Andrew's cortisol levels from December were 100 when they should have been between 259-670. We will see what this shows us.

The appointment was scheduled for 1:30pm. Dr. Ward, our pediatrician, arrived at around 1pm so we had a coffee at the Starbucks with him while we waited. We went into the appointment at about 1:40pm. The first hour and 15 minutes roughly was with Dr. Horvath. She is the fellow that ran all the dysautonomia testing in December. She basically went over the results of that testing with us and Dr. Ward. She also went over her correspondence with the Mayo Clinic and gave our pediatrician copies of those. She said that usually dysautonomia has either a genetic or a autoimmune start. The blood work for mayo is to test for the antibody causes of dysautonomia. If he tests positive for these antibodys then there is some hope that either plasma washes (I can't remember the technical name) or IVIG infusions could help to slow down the progress of this disease. These problems are mostly documented in adults, thus the Mayo clinic was so keen to hear more about Andrew. The other possiblity is a DNA issue. If that is the case then IVIG and the plasma treatments won't help. However, they can try some certain drugs, one is called Clonidine, to try and help alleviate symptoms. If neither of these two tests provides an answer he still has a dysautonomia we just won't be able to identify which one. After alot of talking with the fellow she left to go talk to the attending, Dr. Stoeckler. This gave us 1/2 hour to go over what had already been said with Dr. Ward while we were waiting. They both came back in and we further discussed the two tests that are now outstanding. Dr. Horvath had originally said that she thought that these findings might fall under the umbrella of neurology. That really made us cringe because the neurology departement is quite dysfunctional and we were sure that proper follow up would not happen. When Dr. Stoeckler came in she said that she has decided, and she is the department head, that Andrew will be followed by their department. She said that they are going to contact Mayo for a treatment protocol for Andrew's doctors to follow when he is sick, in crisis etc. There is no one who has any experience with this type of disorder and Children's. However, she feels if they receive guidance directly from the Mayo clinic that they should be able to care for him appropriately. She feels we need to meet together again in 4 months (Dr. Ward is more than willing to come on a once every 4 month basis which is fabulous!) She feels we need to do a thorough organ by organ review of Andrew to get baselines on where each organ is at in terms of being effected by disease. We can say enough about all of the work Dr. Horvath has done. She has brought us closer to a diagnosis for Andrew in the 2 months she has been working on his file than many doctors have done in 7 years. She has been great. Also we will never be able to say enough good things about Andrew's pediatrician. The appointment went until almost 4:15pm and started at 1:30pm. He sacrificed a whole afternoon on his day off to attend this meeting with us. And he is willing to do it on a semi regular basis if it helps. He is really awesome and we would be lost without his commitment. Andrew is a "special" patient to him and for that we are very grateful as he doesn't have the time to do this for all his patients. He always makes the time for Andrew. It was a long but productive appointment. Unfortunately, during the last hour I had a killer migraine come on and by the time we left had a hard time focusing. That is why it is so good that both Martin and Glen were there to remember the conversation.

Andrew is still struggling with a cough. His iron is really low so Dr. Ward called today to say he has set up IV iron doses once a week for the next 3 weeks. This should boost him back up. It also looks like he has the beginning of a UTI again. So we are waiting of an ID tomorrow before starting him on an antibiotic tomorrow.

Friday, February 17, 2006 11:21 AM CST

Just wanted to put a quick update in.

Melissa saw our pediatrician on Wednesday in follow up to her surgery last week. He had the pathology report on her appendix. Even though the surgeon that did her surgery thought the appendix was fine the pathology report shows inflammation and early accute appendicitis!! So they took her appendix out with very good reason as it certainly now looks like this was indeed the source of her pain. She has been back to school for half days this week, today is a professional day, so Monday will be her first full day of school. She is doing quite well although is still not able to do any of her more active day to day activity's. Her sugars are still running quite high but this is a reflection of her more couch potato lifestyle right now that she isn't used to.

Andrew is doing ok. He has a cough that we can't seem to get rid of. Although so far he has coped with it quite well. He is really in need of an iron infusion as 3 weeks ago we knew his counts were low. However, he had a bad infection then and then the whole thing with Melissa has thrown us off. Now he has a very important appointment Monday so we will likely have to do it next week.

Monday is the big appointment with his metabolics specialist, the fellow, his pediatrician and us. This is the first sit down appointment we have had with some of them since the dysautonomia findings. It is at 1:30pm on Monday and is scheduled for 1 1/2 hours. Before that we need to take Andrew to the medical day unit at Children's to have some blood work done. Some of this is going to the Mayo Clinic for testing and some has been ordered by endocrinology in regards to his low cortisol levels. Low cortisol is incredibly important to confirm so they are doing some additional testing to find out whether Andrew would benefit from cortisol replacement therapy. I'll now more on that after the testing is done.

We wish you all a good weekend and we will update after the meeting next week.

Monday, February 13, 2006 12:36 AM CST

Well we have had an eventful time since our last journal entry. Melissa just got out of the hospital on Saturday. She went in last Monday and had her appendix removed on Tuesday. The next days were spent trying to get her off of an insulin infusion and back on to her daily shots, get her food intake up and get her pain under control. She is doing well now. Tomorrow she will go for her Valentines party and then Wed. hopefully she will be able to have some of the day at school.

Andrew has been on and off with a cold for over a week now. It seems to be a bit worse the past day or so. I was lucky enough to come down with the same thing while Melissa was in the hospital. We are very glad to be home though. It is much easier to get her to eat more when the food isn't hospital food!!

We go next Monday to meet with the Metabolic dept. head, the fellow that has done all of Andrew's dysautonomia testing and Andrew's pediatrician. The appointment is at 1:30pm, however, we have to be out at the hospital at 11am to have some specialized blood testing done. Some of this blood work is going to Mayo for testing and some of it is being ordered by the endocrinology department. Andrew's cortisol levels were low when he had all that testing done. As low cortisol can be very serious in illness or trauma they need to determine how low he is and if it will rise. So we need to do an 1 1/2 hour test to help figure that out at the same time. We don't put too much stock in anything until we have solid proof so we will see what it all says. We have a very long list of questions regarding the dysautonomia that we have emailed to Andrews pediatrician. I am going to teleconference with him later in the week to go over these. He wants to prioritize what informaiton we need to leave that meeting next week with.

Andrew is at school this morning and I really hope he can be there tomorrow for his little valentines party.

We got an awesome phone call on Friday. You all know that the Community LIving restructuring fund granted us $25,000 to purchase a new van to have converted. Well we got the van in Sept. We had applied to President's Choice Children's Charity's for the remaining $20-250000 that we need to have the van converted to have an autonomatic ramp and tie downs put in it for Andrew's wheelchair. It was so long that I asuumed that the answer was no. Well we got a call from the Langley Superstore Manage on friday. He wanted to give us the news that we have been approved for $20 000 to convert the van!!!!! This is so awesom. I cried like a baby when Martin called me at the hospital to tell me. We have to go sometime this week for a presentation at the store. There is one last hurdle to overcome. The van will be gone for 4-6 weeks as it goes on a truck to Arizona to be converted. I can't go without a van that can have Andrew's chair in it. So we need to find out where we can get a van from for this time. It needs to either have bucket seats in the middle so we can take one out and sit Andrew's wheelchair there or it has to have room in the back for his chair. So you can pray that this last detail will be worked out.

Tuesday, January 31, 2006 3:02 PM CST

Just a quick little update. Andrew's second urine sample that was taken in yesterday morning is still very positive for white cells as well as bacteria. At this point it looks like he is growing a coliform which is a bowel bug. This often happens when he gets "washovers" as we call them over his vesicostomy as, to be totally blunt, poop very easily gets into his bladder opening and the bacteria starts to grow in there. The good thing (if there is good) is that he is growing a bowel bug this time and not the skin bug that he had grown from friday's sample. This is "good" as that bug is very hard to treat. The ancef that he has been on is obviously not really working to treat whatever new bug he has now so we are switching his IV antibiotic to a different one today pending the final cultures and sensitivies. Hopefully tomorrow. His iron stores are also low again so we are going to need to do some iron infusions soon. His doc said that if he goes into the hospital for the infection (which we are hoping he doesn't need to) then they will do one then. If not, he wants to get him over this bug before bringing him into to the day care unit for his iron infusions. I certainly prefer not to set foot in the hospital with him unless we have to as there are so many respiratory and stomach bugs around right now as I am sure many of you know. I'll update again when we know more.

Sunday, January 29, 2006 9:47 PM CST

Well, Andrew's scopes on the 20th went very well. They found what could be a possible source to Andrew's intestinal bleeding. Apparently what they found is quite common even in normal children and will likely resolve over time. He was able to come home later the same day. The past 3 or 4 days Andrew's been struggling with illness. When ever he is fighting something his autonomic issues are far more hard to manage. His breathing, heart rate, etc. are all over the place. He had a positive urine sample on Friday so his doc started him on an IV antibiotic in hopes to cover it. He hasn't really got any better yet. To add to things, Saturday at 4:30am our power went out and ended up being out for almost 12 hours. We had to move Andrew and his equipment to my parents house on Saturday around midday so that we could plug everything back in. We were happy to be home by dinner. His doctor called this evening to say that his bladder cultures are growing staph epi which is a skin bug! That is very weird so he wants us to repeat it tomorrow in the hopes that that is just a contaminant and that, if he is growing soemthing, that he is growing something easier to treat. This bug is the one that needed Clindamyacin before which is the drug that gave me the very nasty bowel infection that needed to be treated also. So we will redo the urine in the morning.

Andrew has a new helper that is going to start helping him possibly at Sunday School twice a month. That is good for us. Right now one of us always has to go down to Sunday School with him so we are never in church together. So we are really hoping that this will work. Today was going to be the first day but Andrew wasn't at Church today due to him being sick.

Everyone else is doing well. We've had colds coming and going and all 3 of the other kids have had their turns with it the past couple of weeks.

Melissa hit a big milestone this week. January 26th was one year since her diabetes diagnosis. It's been an adventure, however, I have to say she could not have done better with it and we could not be more proud of her.

Wednesday, January 18, 2006 8:33 PM CST

Hi everyone. No news is fairly good news, in that, nothing too terrible has happened the past couple of weeks since we updated. Andrew has had an on and off cold but it has been managable. He has been going to school for his 2 full days and 2 half days. I had a meeting to get his speech assessment results that the school had done. It shows severe delays. It puts him at about a 3-4 year old level when he was 7 and 3 months during the testing. This is no suprise to us of course. Some of the things that they are concentrating on are helping him use he and she appropriately. Right now most of the time he uses HE for boys and girls. Originaly the had hoped that he would know his letter sounds this year. They now realize that that is still way above where he is at. We just started a two day prep for Andrew's colonoscopy and endoscopy for Friday. Anyone who has had a colonoscopy will surely empathize with what Andrew is going to be doing for the next two days. He started on clear fluids only as of this afternoon. Then starting tomorrow, he will start taking the "clean out" medication. He will have his procedures done on Friday. We won't know a time until tomorrow afternoon. He will go to the ICU to recover but we hope that he won't need to spend the night at Children's. If we want him to spend the night somewhere, just to be sure, we will probably see if Langley has a bed. We are not anticipating anything terrible from the tests. This is being done more to make sure he has no ulcerations or sores in his bowels. We will update after it is done.

Wednesday, January 4, 2006 11:19 AM CST

Andrew went to Children's on Monday for his VAD replacement. We went to the ER at 8am and waited there till they took him for surgery at 1pm. He did ok and we spent the night in the ICU and came home yesterday morning. All things considered it was an ok stay. He is now showing signs of a cold and has a lovely runny nose. Thanks to Daddy who has they same. We are looking forward to getting back in to our routine again and pressing on in to the new year!

Sunday, January 1, 2006 6:20 PM CST

Happy New Year everyone. Andrew was able to remain home for the majority of the holiday week. On Friday we ended up meeting up with his pediatrician and starting a periphera IV as he was getting dehydrated. We ran in a bolus of fluids at the hospital and have had it running at home since then. Tomorrow morning we have to be at Children's at 8am to hopefully, have Andrew's line replaced. They have secured him a bed in the ICU to recover after. We are hopping it isn't an overnight but we'll see how he does. Of course, because he is on the emergency slate we can always get bumped but we really want to get this done. Please pray it happens and Andrew has an easy recovery time.

Friday, December 23, 2005 8:21 PM CST

Well, it would seem that December the 23rd is not a good luck day for Andrew. Last year he was admitted to Children's for an emergency scope on the 23rd and was released the afternoon of the 24th. This year we lost his VAD line. This afternoon I went to heparin lock Andrew's IV line so he could play with the kids. It seized up and, even after 3 hours at the hospital trying every trick in the book, it won't work. So we are left with no IV access and we will need to replace it surgically. Of course, with the holidays, we are likely looking at the beginning of January before we can get OR time to get it replaced. So we wait with baited breath hoping he doens't get sick between now and then....... So, we will move on and make the most of our Christmas weekend. Tomorrow we are going to a family skate with Melissa's swim club and then to Martin's sister for the evening. Christmas day is here, we are hosting Christmas Dinner this year. So we wish everyone a very Merry Christmas. Please pray that Andrew remain infection/crisis free during the holidays as we would have to admit him to hospital with having his line.

Monday, December 19, 2005 9:15 PM CST

Some good news.....Andrew's doctor called this morning to say that his last cultures from Friday were also negative. This means that we got rid of that pesky bug from his line and can breathe easy again.

Andrew (and the kids) went to see Santa Friday night. Some of them tend to think that they are too old now.....Your never too old for Santa!! They obliged to a photo to please their dear Mom though!

Melissa and I have been baking up a storm and the house always smells of some goodie in the oven.

The three kids have all had colds and, unfortunately, Andrew is now coming down with it. He has been very quiet today and is coughing alot. Holding our breat that it doesn't progress too much.

We have heard nothing further in terms of hearing back from the Mayo Clinic yet.

Thursday, December 15, 2005 7:14 PM CST

24 hours until Christmas vacation begins.......Our house is very excited and busy this week. There have been several parties, concerts and plays. It's great just busy.

Lets start with the good news. Andrew's cultures that were drawn on Tuesday are negative at 48 hours which is amazing!! It doesn't mean that we are out of the woods yet in terms of infection. However, the last three sets of cultures grew positive before the 48 hour mark. We are doing another iron infusion and another set of blood cultures tomorrow (space at the hospital provided). If this set is negative then I think we are in the free and clear from that pesky infection. The not so good news is that the antibiotic that Andrew was on last week, the Clindimyacin, gave him something called C. Difficile. That is a bowel infection that causes horrible bloody diarrhea. Once that was figured out on Tuesday he was started on a different medication to take care of that. The C difficile could very well have been contributing to his semi unwell state the past couple of weeks.

Today I spoke with the doctor at Childrens that did all the testing on Andrew last Wednesday. All of the tests they ran last week (except one-there was about 8 or 9) were abnormal. They show that Andrew's autonomic nervous system does not function right. He has what is called dysautonomia. This is not a global diagnosis for him. However, this is a huge piece of the puzzle that is now confirmed for us. This doctor is conversing with doctors at the Mayo Clinic about the next steps to take. Some dysautonomias can be helped with a medication infusion. They are all progressive diseases but sometimes this medicine can help slow the damage down. She is trying to find out if this is something that Andrew should be tried on. It is strange. I was telling Dr. Ward this morning that I have such mixed feelings. I don't know whether to be happy to have something confirmed and concrete or incredibly sad to have something confirmed and concrete. It is something that only those families who have walked the path of an undiagnosed, seriously ill child can understand. Whatever is going on in Andrew's body is going on with or without a name for it. We can't stop that. Andrew's pediatrician this morning said not that it really matters but it sure would be nice to have a name for this. I agree. Maybe now, with this new information, we may be one step closer to a name for Andrews disease.

Friday, December 9, 2005 9:40 PM CST

The weekend is here!!

I hope everyone is patient and understanding with our deicision to password protect Andrew's page. We have heard of several people who have had unknown visitors writing horrible things on their pages, even posting that the child had died, when it was all untrue. There are some sick people out there that prey on the vulnerable.

Andrew had his morning of testing on Wed. It went pretty well. I won't go into the details of all the strange testing that they did. We don't have initial results yet. I was hoping to talk to this doctor before the weekend but we missed connecting with each other. I will try her again on Monday. We do have an appointment set up with the fellow that did the testing, Dr. Stoeckler, who is the new head of metabolics in Vancouver on January 16th. We are so very fortunate to have Dr. Ward as our pediatrician. He wants to attend the appointment also and has booked the time off to come downtown with us. Some bad news. Andrew's blood cultures are positive for a third time. This is with us treating him with a drug that should be killing it. So, for the weekend we are extending his Clindamyacin to continue till Monday. Monday, when we will hopefully get his iron infusion done, we will draw a fourth set of cultures. If this is still positive we are in a real bind. The only other drug that this bug will respond to is Vancomycin. Andrew is allergic to it. So if this happens Glen will consult with Infectious Diseases to find out if they have any other med suggestions. If we absolutely had to we could trial Andrew on Vanco. again under very controlled means in a hospital. It would mean that he would have to get all the doses in a hospital though. Anyhow that is getting a bit ahead of ourselves. Please really pray that the next set of cultures is negative then we don't need to worry. If we can't get rid of the bug he will end up having to have his VAD surigcally removed and have another one placed a couple of weeks later. We did that last January when he was infected with yeast. We don't want a repeat of last year.

Tuesday, December 6, 2005 10:23 PM CST

We thank you for all your thoughts and prayers for Andrew the past few days. His infection "appears" to be clearing in that he is feeling better. Tomorrow we will have more cultures drawn to be sure it is gone. Those partial results should be available before the weekend. Tomorrow morning we will spend the morning at Children's Hospital getting his autonomic system testing done. I am not completely sure of what all this will entail so I will update after it is all done. Great news! Andrew was able to make his concert today and seemed to have a ball...............boy, did he look cute singing in his santa hat!! I will try and update tomorrow night or Thursday on tomorrows testing.

Sunday, December 4, 2005 10:25 AM CST

Well it took a very long time to get the sensitivities back on Andrew's cultures from Tuesday. Our doctor was kind enough to track down the results and make medication arrangements yesterday for us. He ended up growing two bugs in his culture from Tuesday. Staph aureus and Stap Epi. The cultures from Wed. just grew Staph Epi. Let me do a bit of explaining. Staph Aureus, when it gets into the blood, hits you very hard and very fast but usually responds well to IV antibiotics. We are grateful that the Ancef that Andrew was switched to on Wed. was the correct antibiotic for this. We are unsure as to why it didn't grow in the second set of cultures but we are going on the assumption that, due to the rapid onset of his illness, that it was truly there. Staph Epi. is very often a contaminant from on the skin. In Andrew's case it is not. It grew in both sets of cultures drawn in two different locations. That means it is a true infection. This bug tends to be more of a bug that keeps you grumbling along not well rather than knocking you down like the other bug. Staph Epi is harder to get rid of. We had to make an IV medication switch yesterday to Clindamyacin, which Andrew has never had before. We had to go out to the Langley ER and have the first dose run and then the pharmacy was good enough to switch over him home iv meds for us. This antibiotic should treat both infections. We need you to pray that we can get the Staph Epi out of his line. If the bugs are difficult to clear we could face having to remove and replace his port a cath. We don't want to do this. Last December he fought with yeast infections in his blood and he had to have his line replaced. We don't want a repeat of last year. On Wednesday we need to go to Children's for the whole morning. The metabolics dept. is doing a bunch of testing on Andrew's autonomic nervous system to see if he has a true dysautonomia or just dysautonomic symptoms. So: Please pray that we clear the infections from his line and he is feeling better, pray that he is well enough to sing in his school concert on Tuesday as he loves the music!, Pray that the testing is successful on Wed. and that it gives direction towards a diagnosis. Also pray for Andrew's protection during the tests as some of them come with some risks, although very slight.

We had a nice evening together last night, putting up the Christmas Tree and decorations and watching March of the Penguins.

Wednesday, November 30, 2005 8:47 PM CST

Andrew's blood cultures from yesterday are positive. Both bottles are growing staph aureus. His doc switched his antibiotic over today to one that will hopefully work on this bug. We won't know for sure until sensitivities are done-which will be tomorrow or Friday. He is still looking very unwell. We are really hoping and praying we can keep him home through this one but we will see how he is tomorrow.

Sunday, November 27, 2005 9:23 PM CST

QUICK UPDATE: Andrew was doing so so the past couple of days so I wondered if something might be up. This morning he woke up and felt a little warm but didn't look bad so I sent him to school and I went to my ladies bible study Christmas lunch. Just after I got home the school called to say that he was starting to go downhill real fast and was shaking uncontrolably and felt very warm. This usually happens when he has got bacteria that has entered his bloodstream either through his central line or his bladder. I brought him home dosed him with tylenol and motrin and called his doctor. He quickly made arrangements for his line to have cultures drawn and a strong IV antibiotic to be run. We did this at the hospital this afternoon. We are home awaiting culture results which will probably be available tomorrow sometime. We will likely need to continue him on IV antibiotics at home. We would really like to avoid a hospital stay. Good news-his hemoglobin was drawn yesterday and it is 111 which is still pretty good for him.






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The bulk of this update is going to be a little bit different. Let's start with Andrew. He is continuing to tolerate his bipap wonderfully. We couldn't be more pleased with his acceptance of this new addition to his equipment. He is likely going to get bloodwork done tomorrow as I think his hemoglobin may be dropping again based on how he is looking more pale right now. Likely that will mean more iron infusions over the next few weeks. That's ok. The others are doing real well.

Now, I want to talk a little bit about something different. To those who read this and don't share the same Spiritual beliefs that we do.....This is not meant to preach.....this is meant to share something that is very meaningful to me. Now....

Each Sunday, for many of us, we sit in our churches and we spend a good portion of the morning singing. To those who don't go to church, we might look kind of funny....you might not understand why we sing, why some of us raise our hands....close our eyes.......clap our hands. It is a time of communion-not in the sense of bread and wine, but in the sense of a time of oneness with our God. There are times when I stand and sing the worship songs and I don't let them actually work in me. I sing them but I am not singing them to the One I love. At the end of a bad week sometimes my mind is not immediately in that place of true Worship. Many of you who are a part of our church family will see that while we are trying to worship, we often have Andrew pulling at our shirts, poking us with his guitar, snoring if he falls asleep, asking when Sunday School is.......you all know how it is. Yet that time of my week is a time that I personally treasure... for even if my mind and heart are not there in the beginning, with openess it happens.....the music starts to speak to my heart, the words are not just words but prayers. Worship music to me is far more than words. Worship music to me is an expression of how I feel about my life and about my God. Worship music is far more than talk about nothing to no one. Sometimes a song comes along that I have a hard time getting through without having my heart touched....without knowing that this song is me....this song is my life. One of the songs that I find particularly relevent in my life with Andrew right now is a Matt Redman song called "Blessed Be Your Name". Originally I liked the beat... It was catchy.....It sounded great turned up loud in the van. Then I began to listen to the words just a liitle bit closer.... have you every really thought about some of the words you are singing....Let me share with you what I think about when I sing this song........

BLESSED BE YOUR NAME IN THE LAND THAT IS PLENTIFUL
WHERE YOUR STREAMS OF ABUNDANCE FLOW,
BLESSED BE YOUR NAME.

....how lucky we are....we are so very Blessed....yes, Andrew has endless medical issues, day to day life is unpredictable, Melissa has got a life time illness to live with, we are walking a parents worse nightmare....twice over in many ways......but we are so very Blessed. We lack nothing.

AND BLESSED BE YOUR NAME WHEN I'M FOUND IN THE DESERT PLACE,
THOUGH I WALK THROUGH THE WILDERNESS,
BLESSED BE YOUR NAME.

.....we are so often dealing with change and grief with the unknowns of what is ahead for Andrew. My life is that of a nurse along with mother, 24/7, it never stops. When I do get time away, the mental aspect of it is still there. We feel like we are roaming the wilderness of uncertainty and terrible fear as to what may lay ahead.....yet I MUST bless His name. I CHOOSE to bless His name.

EVERY BLESSING YOU POUR OUT I'LL TURN BACK TO PRAISE,
AND WHEN THE DARKNESS CLOSES IN LORD STILL I WILL SAY,
BLESSED BE THE NAME OF THE LORD, BLESSED BE HIS NAME.

....those Blessing we are given we will give back to Him.....that includes our children.....their healths..... our future...sometimes darkness will creep in....yet, I will make a CHOICE....a choice to Praise.

BLESSED BE YOUR NAME WHEN THE SUN IS SHINING DOWN ON ME,
WHEN THE WORLD IS ALL AS IT SHOULD BE,
BLESSED BE YOUR NAME.

......those days when Andrew' is home...when the hospital is a distance memory....when he is "well"....when he plays basketball or hockey outside with the kids....that is when the world is as it should be.....that is when it is a much easier choice to Praise Him.......

AND BLESSED BE YOUR NAME ON THE ROAD MARKED WITH SUFFERING,
THOUGH THERE IS PAIN IN THE OFFERING,
BLESSED BE YOUR NAME.

....did you hear what I just said...though there is PAIN in the offering....God knows how hard this is for us......God knows what it is like to watch your son suffer.....He has gone through it.....I have a feeling that knowing that HIS son was going through it all to save mankind didn't make the pain of watching His son suffer ANY easier....There is huge amounts of pain and tears and fear with where our lives are and where they are going.....yet it is my choice to Praise. I grieve, I hurt, I fear.... but I WILL PRAISE....

So when this song starts up on a Sunday morning... you might see 3 sets of Boettcher children's eyes on me (they all look at me because they know it is one of my favorite praise songs) Now, you will know a little bit of what my heart is singing.....


Alison

Thursday, November 24, 2005 10:50 PM CST

Thought I would pop in and update the site. Andrew has his bipap at home now. We only ended up having to spend two nights in the hospital which is wonderful. They decided that there was enough material from previous sleep studies that they didn't need to do another one. The other thing is that the bipap mask (see a photo on the photo page) is not a nice thing to have on. It seals off you nose, your mouth is left out. and it forces breath basically. Usually it takes kids many nights to tolerate having it on. Well Andrew was such a champ. He left it on basically all night Monday night. He took it off twice but I put it back on and he was ok. He was awesome!! From the information the first night the staff decided that they needed to add a back up setting on the machine for the next night. This ensures that, even if Andrew is breathing real shallow, for 5 breaths a minute the machine "forces" a big breath to oxygenate him better. The second night they added that setting and he left the mask on for 11 hours straight. So we were able to graduate yesterday and come home early.Good job, I didn't sleep in the hospital, except maybe about 4 hours total. Last night wasn't that great either. So I am off to bed but wanted to let everyone know that all went quite well. There is some updating to do regarding a meeting I had with Biochemical diseases while we were there but I will do that another time.

Good night!

PS Happy Thanksgiving to all of our American Friends (and Family!)

Saturday, November 19, 2005 2:25 PM CST

I just wanted to pop in and do a quick little update. Andrew has been nice and stable the past week. It is so nice to have these "calm" times. He saw his pediatrician yesterday and he was so pleased with how he looked. I told him to make the most of it because we know it won't last terribly long. He really thinks that Andrew's blood transfusion and iron infusions have been helping to keep him more stable. We plan on watching his blood counts very carefully so that we can give him the above if he starts to drop. Andrew does show signs of a cold today and we are really hoping it doesn't develop into anything as his bipap trial/sleep study is this week. We have to be at Children's at 1pm on Monday and will be there a good part of the week. Particualarly at night. We are hoping to have a chance to talk to cardiology about his heart rate issues and the metabolics team is supposed to come to review his case also. We really need for his abnormal night problems to show up while we are there so that they have some data to go on.

Andrew has been enjoying school. Music is one of his favorites. They are practicing singing for the Christmas concert. He is so cute. The only words he knows to the song is "it's Christmas, it's Christmas" There is a whole bunch more but he sings that part over and over again.

Well, I have to go cook some dinners to freeze for the family for next week. Not sure where we are going to be with the back and forth next week so..... Tomorrow is Martin's birthday. I won't tell you how old he is going to be........ : )

Wednesday, November 16, 2005 9:16 AM CST

Just a quick little update as I have to get kids ready for school. Andrew saw the GI doctor yesterday. Anyone who knows us well knows how 'difficult' this GI can be. It is just his personality. If you watch 'House' he's a little along those lines : ) Only not quite that bad. Anyhow, he has known Andrew since he was 8 months old and he really does care but he is just a hard man to talk with. He wants to do an endoscopy and a colonoscopy to check to see if there is any source in there to his bloody stool. They offered us a Dec. 23rd time spot and I kindly told them NO THANKS. Last year he was scoped on Dec. 24th he isn't making this an annual event. It will be in the beginning of January. Other than that he couldn't offer a whole lot of help. I debriefed with Andrew's regular doc last night and he reminded me that that is the way this doc has always been and always will be and not to take it personally. I know. Next week Andrew will be in and out of Children's for his sleep study/bi pap trial. Hoping we get to catch some of his nighttime issues while we are there.

We know that lots of people are checking on Andrew. We can see that by the rate the counter goes up. Please sign the guestbook and let us know who you are. That way we also don't feel like we are talking to ourselves! : )

Monday, October 31, 2005 10:06 PM CST

Well my little Scooby Doo got out to a few houses tonight...Now he's lying on the couch watching some movies while the other kids are still increasing their haul!!

Andrew had a renal ultrasound and an appointment with urology today. The good news is his kidneys look great.......I am in awe and thanks to God when I see his ultrasounds now and see two kidney bean shaped images on the screen with dark and light areas. When I saw the ultrasound when he was in renal failure, they looked like two squished marshmallows-huge, white blobs. ...and to think his nephrologist at the time didn't think he would regain his kidney function......he hasn't met my God! Faith is not believing that God can, it's believing He will. Anyhow, the troublesome thing is that his bladder is still retaining urine even with the vesicostomy. That, combined with the fact that he is having a bunch of problems with bacteria getting into the vesicostomy, we have a bit of a new plan. We need to put an antibiotic directly into his bladder every night. We will catheterize the vesicostomy, drain any residual urine and then put 50 cc of this antibiotic solution into his bladder. We do this once he is settled for the night and that way it sits in the bladder overnight and hopefully kills the bugs that sneak in. It won't stop all the bladder infections, it might not even help but his urologist says we have nothing to lose. I must say I have always liked his urologist. He is laid back and relaxed and quite pleasant. Not the usual Children's hospital doctor thats for sure. We redid his CBC today to see if the platelet result from the weekend was an error. There was no result available by the end of the day but I will know something tomorrow. Just wanted to fill everyone in. Please continue to pray for Andrew. Pray that he will not resist the catheter as he usually does, this will make it easier on him as well as us. Pray the Gentamyacin helps keep the bacteria away and that the bladder empties better. Also, pray for a strange rash that he has developed and that his blood results will be available in the morning and that his doc would know what to do from there. Good night.......I'm off to rob the candy bowl!

Sunday, October 30, 2005 7:26 PM CST

Andrew has been up and down alot the past couple of weeks. We didn't get an instant pick me up that we had hoped from the transfusion but the good thing is it probably helped him not get as sick during a couple of illnesses. Yesterday he had another iron infusion at the hospital. We did a CBC right before and his hemoglobin was 108 which is awesome....for him. This is after a couple of days of bleeding in his bowels also. One strange thing is that his platelet count has taken a real drop from 311 before his transfusion two weeks ago to 92 now. We haven't had a chance to touch base with his doctor to find out what exactly this means. During his infusion yesterday he had episodes of dropping his blood pressure real low and his heart rate became very irregular and had some slow downs to the high 40's during sleep. They are not due to the infusion but they are glimpses of Andrew's brain function changes. When he is hooked up to constant monitoring like he is during the infusions it is easier to see the changes that are taking place. We know that he is having some trouble with waking choking at night. He can't handle his own secretions sometimes and wakes up coughing like crazy. He had his week long sleep study rescheduled for November 21st. He has to go to see the GI docs on Nov. 15th. Originally we were told it would be March. However, since his doc faxed over a report of the need for a transfusion etc. they have upped his appointment to two weeks from now. Tomorrow he has a renal ultrasound and an apointment with urology. This is quite important as some of Andrew's more severe bacterial infections have originated in his bladder. Tomorrow night hopefully he will be out trick or treating as Scobby Doo!! Check out the photo page for some recent pictures.

Friday, October 14, 2005 10:08 AM CDT

Thank you all for you thoughts and your prayers yesterday. The day was unexpectedly long but went well. We were to arrive at the hospital at 11am to start his transfusion at noon. The blood was due to arrive at noon. However, the blood didn't arrive until almost 5pm so we started very late. His doctor ordered a very slow start to ensure no reactions and everything went ok. He ended up getting less blood than was ordered which we didn't realize until just before we left. The nurses called his doctor who was upset by the screw up but there was nothing to be done. He was supposed to get 400cc's of washed red blood cells which means they would have had to start with more. However, they started with 400 and when the washing was done they ended up with 228ml. The good news is that after some conversations with the Immunologist and the blood bank we have found out that because Andrew makes tiny amounts of IGA that we don't have to wash the blood anymore when he needs transfusions (if he needs transfusions). That will save a lot of time. His doctor hopes that this will help to strengthen him a bit so that with fall coming and his current cold etc. he will be able to manage better iwth infections etc. He feels that his chronic anemia is making his situation worse and this is something we can do to help him. I was talking with him last night when he came over to see Andrew. I told him that this blood was going to go in and completely cure Andrew and he was going to wake up completely normal today!......he asked the nurse if I had been smoking something funny during the day!!! :D
We were able to return home by about 9pm.

Matthew is going to be 13 on Sunday.....A true teenager, my goodness, when did that happen. He is going on a Junior High retreat with Church tonight and will be back Sunday afternoon. All the kids basketball games, practices etc are on hold right now with the teachers strike shutting the schools down.

A good weekend to all.........

Wednesday, October 12, 2005 4:32 PM CDT

Well, Andrew's run of no hosital stays ended yesterday. It really wasn't that bad though. I got a call yesterday morning that Andrew's doctor had arranged for his IV iron infusion to be done at our "home" hospital. He wanted a CBC done first to see it his hemoglobin was even lower than 10 days before. We went and had the iron. Andrew has been struggling with a cough since Sunday when we met a pediatrician for an xray but things looked ok. So Andrew's doctor came out to see him yesterday evening and we went over a few things. He thinks that at this point a blood transfusion could really boost Andrew up to where his blood counts need to be in a much quicker time frame. He explained his reasoning (in all honesty at first I thought he was off his rocker) It does make a ton of sense. So. We stayed inpatient last night to do ventolin and oxygen for his cough. A side benefit is that we can hold his bed now (we are home until tomorrow) until his blood is ready tomorrow morning. Andrew has an IGA deficiency so any blood he received needs to be specially prepared for 24 hours to take the IGA out of it so he doesn't have a reaction. He was typed and matched or whatever they call it this morning. The blood should be ready for transfusion tomorrow at noon so we return at around 11am. Please pray that his cough gets better and we don't need to go back sooner and that there are no reactions or problems with the transfusion itself. We are a little anxious.

Friday, October 7, 2005 9:22 AM CDT

No update for 2 months WOW. Let me briefly cover the past couple of months. Andrew's last admission was the end of JULY!! That means no inpatient stays in August or Septmber!!! We are so thankful for that! August he was quite strong. We believe the iron infusions he received during July really helped. We spent 5 days at Whistler which was just awesome. Other than an infected foot Andrew did great. September began with the back to school rush. Andrew had a UTI but we got him onto home IV antibiotics nice and quickly so we were able to manage him at home. Andrew's trying to settle into his new class this year. It is our goal for him to be able to recognize his alphabet letters by the end of the year. Yes, other kids are starting to read chapter books, however, this would be a great feat for Andrew. Next year we will introduce that letters make sounds (hopefully). Also, we would like him to be able to identify number up to 20 by the end of the year. He enjoys using his computer in the classroom and ususally picks a friend to be his computer helper. The other kids are settling in. Matthew is in Grade 8 and at high school this year. He also turns 13 next weekend. Amazing. He is becoming quite the typical teenage boy. Aaron and Matthew and Melissa have all started basketball this week. Matthew and Aaron are playing on the YMCA league. This is Aaron's first year playing. Melissa is playing with the Penninsula Pacers which is a girls U13 rep team. The coaching and skills she will develop will be amazing. She was thrilled that she made the team this week. They are also all involved in their varying age groups of Sunday and weekday church activities. With the church merger it has been a huge adjustment for everyone, not just our family. We are trying to go slow and encourage the kids to stop thinking of the group as them and us but just us. I know it is something Martin and I need to continue to work on also. Attitudes can sometimes stand in the way of seeing something good. Andrew has had GI bleeding on and off for about a month. Basically the month of October. We aren't sure as to the cause, however, I have thoughts that it might be from the new bowel medication that he was placed on. His hemoglobin has steadily gone down all month and his ferritin (iron) levels are now basically non existant. Normal is 24-48 I believe, Andrew's is 1. So next week we will start three rounds of IV iron infusions that will hopefully help. THey will be done at either Peace Arch or Langely hopsitals depending upon where we can set it up. He requires one to one nursing and monitoring while we are doing it. Also he is scheduled to do a bipap trial next week which would mean sleeping at Childrens each night next week to get setting adjusted. However, I am not sure if that is happening yet or not.

Well, I have got 4 kids home now due to the teachers strike and I have to go pack as we are off on a weekend Thanksgiving retread to Stillwood. It is put on by MCC for families with a special needs child in to family. They have one to one for the special kids and kids programs for the others. Parents get to do some fun stuff too. We are there from tonight until Sunday afternoon.

Have a Blessed Thanksgiving everyone and remember to count you blessing big and small while you are enjoying this long weekend.

Thursday, August 4, 2005 10:45 PM CDT

A quick little update:

You may remember that several months ago we asked for prayers for an application we had made for funding for a wheelchair ramp/lift equipped van. Many months passed and we assumed the worst. Today we received our letter of acceptance and the first installment of the $25,000 that they have granted us for a van!!!!! To say we feel blessed is to minimalist!!! Now, pray that we are able to find a suitable van (wheelchair vans are few and far between).

We have been busy all week with the bedrooms but we are thrilled to bits that they are done. Just the cleanup left for tomorrow. Tomorrow night the kids come home from camp and I am so excited to see what they think when they get home. Andrew has had a pretty good week except for some trouble with the heat. He has enjoyed using his play hammer to "help" Martin with his handyman work!!

Tuesday, August 2, 2005 10:06 AM CDT

Hi everyone. Just a quick and late update. Last Sunday early morning Andrew spiked one of his very fast rising, you can't ignore this fevers. We wisked off to Peace Arch Emerg. They ran blood tests and he was admitted to Langley for IV antibiotics again. This time he ended up growing 2 bugs in his bladder and it looks like those same two bugs crossed over into his blood stream also. He was in the hospital until Friday morning. He also had another iron infusion while we were there. We are hopefully that the iron infusions will be sufficient and he won't need a blood transfusion anytime soon. We are glad that we are home. Matthew and Melissa are off at summer campl. I am having seperation anxiety as this is Melissa's first time away for more than a night since her diabetes diagnosis. We are very busy at work here. We decided months ago that the time to do the kids rooms was while they were at camp. So we are switching the boys into Melissas room and Melissa into the boys room, painting, redecorating etc. The paint should be done in the boys new room today and Aaron should be in there tonight. Anyway, back to work...........

Alison

Friday, July 22, 2005 11:03 PM CDT

Andrew's anemia has been causing him alot of difficuly the past 10 days that he has been home. He has suffered from headaches, dizziness and near fainting episodes. We redid his hemoglobin and some other iron related blood work. His hemoglobin was a tiny bit (promising) his reticulocyte count (which measures how many red blood cells he is trying to make) was up. That is good that means that he is at least trying to use the iron we are giving him to make some more hemoglobin. Andrew's doctor called the hematology department at Children's hospital to see what they thought. It was decided that Andrew may benefit from 3 iron infusions. That is iv iron given in 3 seperate doses once a week for 3 weeks. The down fall to what sounded like a perfect solution was that there is a chance with an IV Iron infusion that the person may have a severe allergic reaction. In coordination with his doctor (who was a true angel about the whole thing once again) we met him at the Pediatric ward this afternoon. He needed to be present through most of the infusion just in case. Andrew was kept on a cardiac monitor, had vital monitored the whole time and the nurses had steroids etc. ready in case he reacted. They also had equipment ready to help if he indeed had difficulty breathing. Now the good news, he did great! Not really any hint of a reaction. This means that next time we take the same precautions (except his doc can be within a stones throw rather than in the room)but his chance of a reaction now is basically nil!! If this does work we save 6 months of oral hemoglobin which gives him incredible stomach upset. These three doses give him the equivilant. In future, if his hemoglobin is dropping we can do one of these infusions while he is in during one of his hospital stays. He desperately need the iron. His doctor received the last of the three blood tests done yesterday today and Andrew's ferritin (kind of like iron) level should be between 22-100?, well his was 2!! We have our sights set on having him in the 100's within the three weeks. This will of course depend upon his body now being able to use this iron when he is given it. That is what you can pray for! He is home again this evening, we were only there for about 3 hours.

Friday, July 15, 2005 9:53 PM CDT

Well Andrew ended up in the hospital again last Saturday evening. He developed a cough that we couldn't really control with his inhaled meds at home. On top of that he had a lot of swelling and redness at his implanted IV site, had runs of real fast heartrates and other stuff. It was decided that it would be best for him to be in the hospital. He grew a bug from his IV line again but it looks like it was likely a contaminant and not necessarily an authentic infection. Regardless it landed him on IV meds for 10 days. He should be done on Monday I think. One of the bigger problems he is having right now is that his hemoglobin has taken a dramatic drop in the past 2 weeks. It is back to being as low as it was when he had his GI bleed at Christmas. This is very, very discouraging and frustrating as it had taken us 6 months to get him up even close to normal (he wasn't even at normal levels yet) and now he is back down at 74 again. His doctor tossed around the idea of a transfusion (which he has never had before) however, we all decided that trying real hard to get iron supplements in for a month is a better plan to start with. If these things don't succeed there is a possiblity that he will need a transfusion still down the road. We pray that isn't neccessary. One of the problems with the iron supplement is that it plugs one's bowels. Andrew's don't work anymore without a strong medication daily to make them work. Adding the iron to this is going to complicate this more. We are working very hard to stay on top of this. Anyhow, we are glad to be home (we came home on Wednesday) and we really want to be able to stay home for awhile. One of the things Andrew has come home with due to his many issues is that he is having spells where he is very light headed (near fainting spells). He tells us that there is a bee in his ear when it starts, then we are able to get him to lie down so he doens't faint. The "bee" is the ringing in his ears that he hears in that woozy, prefainting state (we think, that is our interpretation of it anyway) So, he is quite weak and this is going to be a pretty long and slow recovery I think. We had alot of nursing time the past 20 hours which is great. We even had an overnight nurse last night! Now things with that are more sporadic again so we will see how all goes. We have the weekend off from swimming this weekend and are looking forward to not doing terrible much ( in theory anyhow!!)

PLEASE sign our guestbook. We know that you are all here reading by how high the counter is, however, we would love you to just say hi when you are visiting. Then we know who we are "talking" to!

Monday, July 4, 2005 9:21 PM CDT

Well Happy Canada Day to all our fellow Canadians and Happy July 4th to all our American friends south of the border!!

Andrew recovered from his blood infection but a bad cough has had a hold of him for awhile. We are hoping that he is doing a bit better now. On Thursday we went to have an EEG (measures brainwaves) and an appointment with his neurologist at Children's hospital. He was so good. They want them to fall asleep during the EEG so that they get better readings. I was shocked that he actually did fall asleep. He was so good when the put the electrodes all over his head! We gave him a nice short buzz cut the night before so that he wouldn't have his hair all pulled. We met with the neurologist later the same day. She ended up spending nearly 2 hours with us. First, his EEG has deteriorated from his last one about 2 years ago. Not too shocking I guess when you consider that his general health has deteriorated in that time also. It shows that his brain waves are not very well organized, that he has a seizure disorder (we knew that) and, now, his eyes don't send some messages to his brain. The doctor spent alot of time getting caught up. There was no lightning bolt diagnosis or anything like that but she is now up to date and thinking about Andrew once again. Tomorrow we have to get some blood work drawn as Andrew's hemolglobin had taken a dip between his last two sets of blood work so they want to see how it is now.

Please pray for our church. Our church family has been a source of strength and encouragement to us for the years that Andrew has been fighting this. They have done many wonderful things to support us in practical ways as well as praying for us. Now our church is in a transition and we need to pray for guidance and direction and, above all, clear leading from the Holy Spirit. We ask that you also pray for the same thing for our family as we try to be still and wait for what God wishes us to do as a family in regards to this.

Pastor James and Marcy, we love you both and we want you to know that this family truly appreciates you and all your love and the commitment that you have made to our family. James, the Sunday afternoon that you came out to Children's Hospital right after Andrew had been transferred there in renal failure, spoke more to us than you could know. We will always hold you close.

Our dear friends, John and Christine and kids, in High River, have had a very stressful month. High River was one of the areas badly affected by the flooding in Alberta. Thank God, their house was ok. Stressful though seeing their neighbours so affected. Ronan, our precious little angel friend that past away in October, would have been 6 years old this month. Also, June is the month that Ronan's older brother Callum was born and died 5 days later, 7 years ago. Please pray for the Hughton family as they try and spend some time together camping this summer. May God be a comfort to them during these very hard anniversarys.

Sunday, June 26, 2005 8:45 PM CDT

I can't take terribly long to update as I am so tired but alot happened this past week. On Monday Andrew went on his classes year end field trip to the aquarium. I went along and he did really pretty good. He liked the beluga whale!! After we got home he began to act a bit off. At 9pm he had no fever and his monitors were fine. At 10:30pm Martin checked him and he was shaking badly in bed and had a fever of 39 under his arm. Due to Andrew's indwelling IV line in his chest, any fever is grounds for a trip to the ER to have cultures run on everything. We were at Peace Arch Emerg. from 12-4 am. They ran cultures on his urine and his blood and did a blood count. Andrew's blood count looked like maybe he was fighting a virus so they didn't think it was anything ominous. They called a pediatrician on call, ran an antibiotic dose and I said I would follow up with his regular doc in the morning. Morning came-a little too quickly when we got to bed at 4:30am-and he still was unweel. By 2pm we received calls from our pediatrican saying that his blood had grown bacteria after less than 12 hours (which is very fast). We had the option of running another dose of IV med in at the ER (that particular drug is just once every 23 hours) or admitting him and doing a different IV antibiotic and trying to get him onto home IV as soon as possible. He wasn't real bad at that point but my instinct told me to admit him, as much as we hate to do that. We got there and settled his fever appeared to have gone and we were just settling in for the night and I was thinking maybe we could have done it the other way. Then in the matter of about 35 minutes Andrew went from OK to very, very sick. His temp was 36.5 (nice and normal) when the nurse took his temperature at about 9:30pm. 10 minutes later he began making strange retching sounds and started to shake uncontrollably. I grabbed the nurse and we took his temp again it was already 38. Then over the next 20 minutes his temp rose so incredibly fast that his little body was having a horrible time compensating for it. He was shaking so uncontrollably the nurses wanted to give him demerol or something for his comfort. He was retching so bad, his eyes were rolling and he began to make seizure like movements (however, he did not have an overt seizure which was a blessing!) We took his temp again, this is just 30 minutes after it being normal and it was 40.9 under his arm (that is about 105.6) He was also hallucinating at this point. Apparently the brain does not like temp. that high and, it especially does not like it, when the temp changes that abruptly. It took a whole lot of fever meds and cold clothes and stuff to get his fever down. It sat that high for about 1 1/2 hours. About 2:30am it finally came down and he settled down to sleep. For the next 24 hours we kept him on around the clock meds for his fever. Neither the nurses nor ourselves wanted to see him go through anything like that again. By Thursday morning it appeared that we were on the right track and the tests came back showing that the bug he grew in his blood, Klebsiella pneumoniea, was indeed sensitive to the antibiotic he was on. We opted at that point to bring him home with his IV antibiotics (even though he was still clearly unwell) and have his home nurses help with him. It is amazing how over time our comfort level has moved with the progression of Andrew's disease in terms of what we are now comfortable with trying to manage at home. Six months ago I wouldn't have dreamed of bringing him home so soon after such a scary episode, however, now, with the abilities that we have at home we try to get him back to his home enviornment as soon as we possibly can. There was an alterior motive this time though. Every June my best friend Cheryl, her mom, and myself go on a two to three day excursion to about 30 quilt shops in Western Washington. Well Thursday was the day we were supposed to go. We had planned this for a year! I had all but decided that I would not go until we decided he would come home. Then I decided I had to step way outside my comfort zone in leaving him at this point and go as I know how much I really needed a bit of a break. I know that Martin and our nurses can take equally good care of him as I can. It is an emotional thing for me to leave him after seeing him so unwell. So, I will probably have a massive cell phone bill this month but I did go and we did have a wonderful time! We logged in 1000 km. in 48 hours! And did......I think it was 30 quilt shops, wasn't it Cheryl.......in the 2 days. I must say that I would have had more energy and been able to take more advantage of the time if I had had some sleep in the three days before we left but it was still great. We returned late last night and then I was with Melissa at a swim meet in Burnaby all day today. It would appear that Andrew is still continuing to mend. A little slow but he is doing better. We are hoping he can get to school a bit the next couple of days as he only has 2 1/2 more days left in Grade one. Matthew's grade 7 groups went to Stillwood from Wed. - Frid. He had an amazing time but is quite tired too. This week Andrew has a wheelchair fitting appointment tomorrow afternoon and then on Thursday he has an EEG and neurology appointment. He hasn't seen them in about 3 years so it is follow up. Matthew has his grade 7 graduation ceremonies and dance on Tuesday. My little boy is growing!! Unfortunately, Melissa was supposed to go to an appointment with her endocrinologist last Wed. but we had to cancel due to Andrew's stay so we were able to rebook it for the end of July which is quite good. Hope that didn't get too long. I ramble when I'm tired but wanted to bring you up to date. I am off to bed real soon, to hopefully sleep more than 5 hours in one night, for the first time in a week.

Friday, June 10, 2005 11:29 PM CDT

Well Andrew has improved quite alot in the past 36 hours. Tonight we even took him down to the beach for a little while. It was time for us to change his access for his port so that is a good time to do these things. We took pizza to the beach and met some friends. Then the kids played in the tide pools and the sand for a while and we stopped for an ice cream on the way home. I think he had fun. He had a nice bath when we came home. He can only really bath once a week when his access is changed so he enjoys his bath when he gets it. He is real tired now. The UTI has responded nicely to the antibiotics and if the blood infection was actually real and not a contamination then it is being killed by the antibiotic. Yesterday we had repeat cultures drawn and the real good news is that after 24 hours these cultures are negative. He did start to get a runny nose tonight so hopefully it was just the seaside air and nothing else. It is so nice to do some "normal" things with him. Watching him do the little things that all of our kids take for granted is such a beautiful thing. Most kids (and adults) take for granted being able to walk on the beach, feel the sand in their toes, watch a crab run and hide and sit on a bench and have an ice cream. For Andrew it takes some coordinating and timing. Andrew is hooked up to his IV pole almost all the time when he is home. That means that he can only really move around the downstairs of the house and has to cart his pole with him. Yet, this child never complains, never gets frustrated, never whines. However, you can see the sheer delight in his eyes when he gets to go do "normal" kid things like he did tonight. We treasure those moments as memories that we will hold dear. These memories are some of the things that carry us through the harder times. We need to learn to take advantage of those times and make the most of the moment. I was on another families website tonight and they had been inspired by something that they had read today. They were able to bring one of their sons home from the hospital after a long stay today. They have 3 children and all three of the children have a neurodegenerative disease. Here are some things that she shared today that I find so incredibly inspiring. I think God used this to encourage me today.

"Ideas and dreams you have today will directly influence your future. What you begin to believe for, and then how you act on that belief, will result in what you have, do, and are in the days, weeks, months, and years ahead ...Believe for God's highest and best in your life. Then begin to live and work as if that miracle is on its way."

May we all believe that God's miracle is on the way. We have a wood plaque in our home that says "Faith is not believing that God can, It is believing He will!" AMEN!

Wednesday, June 8, 2005 9:30 PM CDT

Happy Birthday Grandma!!!

Well, Andrew is unwell again. He became unwell over the weekend and it appears that he has another UTI. His blood cultures were also positive so we are waiting on the final results of those tomorrow to figure out if it is real or just a contaminant. He is on IV antibiotics again. What a vicious cycle. I have been down myself since the end of last week with a bad cold. I went to the doctors today and got some antibiotics as it looks like I have a bronchitis also. Anyhow. Just wanted to give you a quick update. We are hoping that everyone is going to get on the mend as this weekend, as a family, we are participating in the Walk to Cure Diabetes that is hosted by the Juvenille Diabetes Research Foundation. That is this Sunday at the Aldergrove Zoo. Anyway, I am so tired and am off to bed soon I think. Thanks for continuing to keep us in your prayers.

I have something wonderful to share. Last week Andrew received a package in the mail from some of Mommy's Internet Friends. Many of you know that Cross Stitching has been a long time hobby of mine. I am part of an online IVILLAGE community of women who love to do cross stitch. I have been a part of this group for several years. Well, a bunch of these wonderful ladies from all over the world really, made cross stitched squares with little boy stuff on them and sent them to my dear friend Kristen in the US. She then turned them into a beautiful bed sized quilt for Andrew to cuddle. It is so incredible. When our new digital camera arrives I will be sure to post some photos. So to all my dear friends who were a part of Andrew's Quilt of Love-Thank you from the bottom of our hearts.

Thursday, June 2, 2005 8:31 PM CDT

Well, another round of infections done. It turned out that his gtube site was growing staph aureas and that was what caused the rash that looked like the chicken pox. He used to get that frequently when he was younger but hadn't had a problem with it in the past couple of years. It was unfortunate to see it return. The "good" thing is the antibiotic that he was starting that day for his bladder infection was also the correct one for the g tube bugs. The poor boy has had a bit of a traumatic week though. Earlier this week he had an "accident" with his wheelchair wheel and his feeding tube and his g tube pulled out. Imagine something the size of a small apricot pulling through a small opening your stomach. It isn't pleasant. The important thing is getting another tube or something else inserted into the opening before it starts to close down. I made a rush to the school, deflated the balloon and reinserted it. His poor aide, Melan, needed some valium I think! Well, this morning, getting into the van, what does Andrew do, step on his tube and pull it out again!! Poor fella! Anyhow, he has about 2 days left on his antibiotics and then he is done for now. The others are doing well. Melissa is a swimming maniac these days as she is into her twice daily swim practices and meets on the weekends. Matthew is preparing to "graduate" from grade 7 in a few weeks. Am I really old enough to have a child going into high school in September??????

A few things you can keep in prayer:

-He had a major "contamination" of his vesicostomy (bladder opening) today. This has caused some of his bladder infections before so pray that this doesn't happen this time.

-Aaron has a real bad cold right now and Andrew really doesn't need that to deal with.

-His at home sleep study results that we were waiting for came in and were really abnormal. We now are waiting for him to receive an appointment to be assessed for BiPap (a different type of breathing machine for at night) We would like this process to not take very long.

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I am including the lyrics of a very touching song that we discovered. I don't know how to link to the actual music but if you have speakers you can do an internet search for this song and listen. It is truly moving and meaningful to both Martin and I.



He's My Son
by Mark Schultz

I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs your help
I've done all that I can do myself
His mother is tired
I'm sure you can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill up her eyes

Can you hear me?
Am I getting through tonight?
Can you see him?
Can you make him feel all right?
If you can hear me
Let me take his place somehow
See he's not just anyone
He's my son

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there

Can you hear me?
Am I getting through tonight?
Can you see him?
Can you make him feel all right?
If you can hear me
Let me take his place somehow
See he's not just anyone
He's my son

Friday, May 27, 2005 11:47 PM CDT

Thank you for your thoughts and prayers after our last post. Andrew's tube site was indeed infected, however, just as we asked prayer for, it would appear that the medication he was put on for his bladder infection has helped his gtube site also as it is starting to look better. Unfortunately, we did not get the test results we have been waiting for and the office is now closed until Tuesday. Mainly we are grateful that it looks like we are going to be able to get him through these infections without hospitalizing him.

A couple more things to pray about:

-We are applying at a couple of different organizations for funding for a wheelchair lift equipped van. Without this approval it would simply be unattainable due to the cost. Andrew's wheelchair is getting heavier as more attachments are put on it. Also, when you add the oxygen tanks etc that he needs at times it is really hard to lift. A lift would be incredible.

-There are several financial commitments that we need to keep in the next few weeks and we need some prayer that we are able to make them. Even though alot of Andrew's medical equipment etc. is covered through the At Home Program some are not, and there have been alot of those expenses recently.

-Pray that the infections etc. would continue to improve and that the medication would continue to work.

I found a great poem on another website and I wanted to share it with you. I read with different eyes than perhaps you will. Being the Mother of a special needs child it holds so many truths that just 7 years ago, before Andrew was born, I never would have been priviledged to. Have a wonderful weekend. Enjoy your families!


SPECIAL MOMS
When a toddler gets into the plant pot dirt, a special mom
appreciates how well their fingers work.

When a child yells "NO!" A special mom enjoys the sound of their spoken word.

When a child must wear a helmet when riding a bike, a special mom is grateful that the helmet is not being worn to prevent injury from a seizure.

When a child plays the `chasing game' with mom in the grocery store, a special mom is thankful that her child can run at all.

When a child makes a mess while eating their lunch, a special mom is glad she does not have to put their lunch through a feeding tube.

When someone's child is having a `tantrum' in the shopping mall, a special mom never jumps to conclusions.

When a child gives themselves their first haircut, resulting in an embarrassing head shave, a special mom is blessed that they are not bald because they're going through chemotherapy.

When a child listens to annoying rap-music, a special mom enjoys that her child can hear any music.

When a child is at the hospital for an ear infection, a special mom feels blessed her child isn't in congestive heart failure...again.

When a child complains about taking an awful tasting cold medicine, a special mom is relieved that it is not heart medication, seizure medication, anti-rejection drugs or something worse.

When a child in a wheel chair is out for a stroll with mom, a special mom understands that it may not be a good day to ask questions.

When a child needs extra tutoring to get through math, a special mom is relieved that her child doesn't need a team of seven people and five pieces of specialized equipment, just to get him through the school day.

When a child needs the light on at bedtime, because they're scared of the dark, a special mom is thankful that her child does not live in constant darkness.

A special mom looks at her special child with pride, while strangers often look at the special mom with pity.

A special mom appreciates all the things typical children do, whether naughty or nice.

A special mom rarely complains about the 45-minute wait at the doctor's office for a check-up, when she's spent months at a children's hospital with her dying child.

A special mom would never feel disappointed that her healthy newborn was not the gender she had hoped for.

A special mom views the world through special eyes, ears and hands.

By Luanna Buburuz

Thursday, May 26, 2005 9:35 AM CDT

Just a quick little update for Thursday morning. Andrew has developed another bladder infection. We picked it up on Tuesday and he started home IV antibiotics yesterday afternoon. Also, out of the blue yesterday, Andrew's g tube site has become really quite inflamed and red and he has a developed a spotty rash over his diaper area. We think his gtube site is infected but are hoping that the IV ancef that he is on for his bladder will help that also. So we wait........

You can pray that
1) The UTI clears up quickly
2) If his gtube site is infected that the med for the bladder will help it also.
3) The gtube infection doesn't spread. We are a little (ok, quite) nervous as the last time his g tube site turned red like this was the infection just prior to his renal failure. Although at that time it looked much worse. So you can pray for peace of mind also.
4) The spots we have discovered are not a 2nd case of chicken pox but are related to the other things going on right now.
5) Heat really bothers Andrew, even when he is well, so we hope that the beautiful weather this week doesn't complicate things further.
6) We have been awaiting the results of the home apnea study we did 10 days ago and haven't heard anything yet. We would love results before the weekend.


Martin is staying home for part of the morning as the other kids need to go to the orthodontist and Andrew can't go to school. So someone needs to stay with him.

Thanks for your thoughts and, particularly, your prayers.

Monday, May 16, 2005 8:54 PM CDT

It has been a couple of weeks since our last update so I thought I would send off a quick one.

We received back the final Immune testing results that we were waiting for. The original testing that came back abnormal twice was.........normal this time. Andrew can never be consistent! However, in testing for that particular problem, they discovered that one of his immunoglobulin levels is very low. There isn't anything that can be done to replace it. It will make him more susceptible to chest, intestinal, sinus and ear infections. It isn't likely to mean that he will get anymore than he already does.....which would be near impossible. However, it does help to explain a little bit why he gets infections so easily. His immunologist will continue to work with us to try and keep him as infection free as is humanly possible.

On Friday we went to see Andrew's pulminologist (lungs). We had a chat about how his apnea has been much worse and he is requiring more and more oxygen, especially when sick. This weekend (actually last night) we did an at home sleep study. The little machine that Andrew was hooked up to read how much oxygen he had in his system, how many breaths he took etc. The problem was that he had a bit of a restless night and at 1:15am we shut it off because he decided to pull all of the cardiac wires off. We dropped it off back at Children's this morning and we will see if it shows enough information if not we will likely have to do another one. It was a very sleepless night and I am incredibly tired tonight so I hope that it was sufficient.

Tomorrow we have to go see the physiotherapist to have an assessment of his skills done. The last one was a year ago. These assessemnts are not always fun. In many areas Andrew has lost alot of strength in the past year. Having numbers attached to it and knowing that last year he was "closer to normal(for lack of better terms)" than he is now is always depressing.

On a much happier note, my baby girl turned 11 this week!! Where has time gone. To get a little sentimental, Melissa is amazing. (All my kids are, but it's her birthday so....) I look at the young woman she is becoming and I am in awe. She is confident, self assured, caring and truly a God centred young woman) She has not only faced the huge mountain that our whole family has been dealt in dealing with Andrew's illness. She has had to face her type 1 diabetes diagnosis as well. Melissa has handled everything about her "condition" ( I will not cause it an illness because there is nothing about that girl that is sick) with such grace and strength. She continues to excel in her sports (swim season has just begun again!) and in her school work. All the while, learning to control and manage her diabetes without having it negatively affect her attitude. I can truly say "I want to be like Melissa when I grow up" So to my sweet baby girl, Happy Birthday and may God continue to mold you and shape you, as he is so obviously already doing, into the exceptional young woman you are becoming.

Several people have asked us if we have holiday plans this summer. Well, unfortunately, it doesn't look like we are going to be able to take any time. Focus on the Family is having to move it's warehouse space this summer due to lease issues. They will reunite with the offices next year hopefully. However, what it means is that Martin's August and September are going to be very busy dealing with that move. We are unable to take time off before August 19th because of Melissas swim schedule and the kids visits to Stillwood this summer. Also, with Matthew starting high school this summer we can't look at Sept. as an option. So it may be a long year in terms of not being able to take some time off together. You can pray that we would find some quiet time somehow together to spend some quality time together - somewhere, somehow!

We would also ask that you just continue to pray for us. Many of you ask how to pray specifically for us. Sometimes that is very hard to answer, other times it isn't. So much of what we deal with with Andrew is time consuming and emotionally taxing. We would ask that this week you just continue to lift us up and God will know what are needs are at that particular hour and he will meet those needs as He always does.

Alison

Wednesday, May 4, 2005 10:12 PM CDT

............You've all been waiting on the edge of your seats to find out all about the Wiggles, haven't you???!!! Doesn't the picture speak volumes!!!


It was so good. The best part about it was Andrew's suprise and joy. He really was quite unwell and was needing oxygen and stuff. Well, we made arrangements with his pediatrician to admit him to hospital right AFTER the concert. I am so glad we did. I couldn't imagine him not having had that chance to meet them like he did.

As I said that same night we had him admitted and continued on the IV antibiotic that we had started at home earlier in the week. His sleep apnea also had worsened substantially during this time. We redid urine cultures on Friday and he grew a second bug that was not sensitive to the Ancef that he was on. It was a pseudmonas bacteria which he hasn't grown since we got rid of the foley catheter last September. So he started on a second drug on Sunday when those sensitivities came back. Tuesday we were able to come home. However, we are awaiting an appointment with his Respirologist in the next two weeks to discuss Andrew's increased oxygen needs and also his increased sleep apnea. That appointment should be soon and we are hoping that his pediatrician will be able to join us. The third set of testing on Andrew's immune system came back abnormal again. This is showing a possible problem in the complement cascade. Which I not understand so certainly can't explain. Our pediatrician doesn't even really understand this particular part of the immune system. However, we will meet with the Immunologist again in a few weeks to discuss what next. It will not give Andrew an overall diagnosis however, it might be able to give us some information that will help us reduce these on going and progressively serious infections that he is getting.

Check out the photo page for some newer photos of all 4 kids on an outing we had to the park during Spring Break.

Wednesday, April 27, 2005 11:12 AM CDT

Well tomorrow is the big day. It's Wiggle Day!!

More on that a bit later. Andrew had an appointment last week with an immunologist at Children's. An incredibly nice fellow. He has done a few tests on Andrew's immune system. He is waiting for results to comment more but there is a possiblity that a portion of Andrew's immune system isn't functioning correctly. After the blood tests are all back then we will meet with him and Andrew's pediatrician to discuss what, if anything, we can do to make it stronger.

Yesterday he saw the Urologist and had a renal ultrasound done. The wonderful news and such a true answer to prayer is that even in spite of his renal failure last March and all of the recurring UTI's he's been getting, his kidneys are growing and appear to be functioning normally!! A few months ago when we met with the nephrologist, (kidney doc) that cared for Andrew when he went into renal failure, he said that to be completely honest he didn't think Andrew was going to recover kidney function based on the severity and rapid onset of his kidney failure. The power of prayer can be an amazing thing. The ultrasound yesterday showed that his bladder is retaining urine even though he has the vesicostomy. The urologist suggested that we catheterize Andrew's vesicostomy each night to see if getting a complete draining of his urine at least once a day will help cut back his UTI's. That is something that we will try for the next 6 months. If it doesn't help there is another thing we can try six months from now. He currently has another bladder infection and was just started on IV antibiotics yesterday. Whenever Andrew gets infections his whole body reacts. His apnea at night is worse and he is needing oxygen more often again. He will likely need an admission for a few days so he can get more oxygen than we can give at home. However, he won't be admitted until after the Wiggles tomorrow (if he needs to be) His pediatrician agreed that this special event is too special to miss and completely agreed with our decision to keep him home until then.

We get to go backstage and spend some time with the Wiggles at 1:30pm tomorrow. (Hopefully we will get some photos onto this page on the weekend-although our digital camera has died so I'm not sure exactly how this will work) The concert is at 3pm. Please pray that Andrew is "ok" relatively speaking, for the concert. We really want him to enjoy this experience.

The other kids are doing well. Melissa and Aaron had their birthday parties on Sunday afternoon at Flip City. They both had a great time. We thought that combining the two, one right after the other, would work to our advantage and it did. It was good to get them both done. However, we were pretty darn tired Sunday night.

Melissa is still being a total hero in taking her diabetes in stride. Her blood sugars tend to fluctuate alot but for the most part she is doing great. She is continuing with all her sports and is even playing RUGBY! on the school team for the next few weeks. Her swim season kicks off this weekend so our busy summer is about to start!

Can you believe it has been one year this week since our Wish trip to Disney World. How time flies and yet it seems like a lifetime ago. It was an experience that we still talk about and dwell on. Also, that means it has been a year since our dedicated friends renovated our downstairs for us while we were gone. Not a day goes by that I don't think of how nice it is to be in our home now. Thanks will never be enough for the sacrifices you all made for us. You are truly amazing. Watch for a reunion open house that we hope to have (in June probably). I wanted to do it exactly one year after but Andrew and life have dictated otherwise. We would like to have a BBQ open house after church one Sunday for anyone who was a part of our Extreme Home Makeover. No matter how big or small your contribution was, we want to see you all. Watch for further details.

Thank you all for your ongoing thoughts, prayers and support in various ways. It is truly appreciated.

Wednesday, April 6, 2005 4:35 PM CDT

Well, Andrew has just got out of the hospital. He went in on Saturday night as he was diagnosed with a couple of infections last week and was put on two iv antibiotics through home IV program. Unfortunately when he wasn't doing too much better by Sat. night we talked to the oncall pediatrician. She checked into things and it turned out that one of the two antibiotics was not the right drug for the bug he was growing. We started him on the meds before we had complete results as the weekend was coming and we didn't want to just do nothing. His UTI is now cleared up. He has had some problems with his vesicostomy. Without going into too much detail it is prolapsing (coming out too far) The problem with that is that when it does that and goes back in it basically drags bacteria back in to the bladder with it. A few weeks ago Andrew had some blood work done on a certain component of his immune system. They came back pretty abnormal. We repeated the tests and got results Friday that show one of the levels was much better than the first test, which is good. (the test is very particular, the blood has to be kept and just the right temperature and then frozen etc. ) The second test came back still abnormal so his doc has sent a letter off to the Immunology dept. and we are anticipating that they may see him in the future. The other thing that delays Andrew's discharge these days is his need for more oxygen than we can provide at home while he is recovering from illnesses. This tends to slow things down and is the reason that he usually comes home for the day time hours but goes back at night (when his oxygen needs are highest) as we are trying to get him out of the hospital. Yesterday we were home for just the daytime hours and went back overnight. Today we are going to make an attempt at keeping him home overnight but they will hold his bed until the morning just in case. I am eager to get him back to "normal" and back in school a little bit.

One little piece of exciting news, in the last update I told you about a concert, The Wiggles, that we are taking Andrew to later this month. On a bit of a whim I emailed the production and promotions company for these guys in Australia. I shared with them a little bit about our special little guy and gave them a link to this website so they could verify Andrew's story. I told them that I know they are probably overwhelmed with requests but it would make this little boy very happy if he could meet Greg and Jeff and Anthony and Murray (The Wiggles). We received an email confirmation this week that he is invited to a pre show Meet and Greet with all the Wiggles back stage for an hour before the concert!! This is so exciting for us. I am not sure that Andrew completely understands that he is going to meet them. He talks every day about going to see the Wiggles show though. He will be thrilled. I am so very excited for him!!! Our thanks to them for helping to make a special little boy very happy.

Melissa is doing well. When she fought her abcess tooth recently it also brought an abrupt end to, what they call, her honeymoon period. When a child is first diagnosis they usually go through a period of time when their bodies are still making insulin. Melissa was on tiny, tiny doses of insulin before she got sick. After her hospitalization she has been gradually needing more and more insulin. We are just about at the point where she is almost coming back down into a "safe" range with her sugar levels. She is looking forward to another very busy swim season again that starts in just a few weeks.


Matthew and Aaron are continuing to do well and doing things that young fellas do.

Wednesday, March 16, 2005 11:03 PM CST

Well this journal update is going to be a little different. I believe the last time I updated Andrew had just got out of the hospital (Last Monday). Well, Wednesday Melissa was admitted and just got out yesterday. Unfortunately she had an abscess tooth and the pain along with the inability to eat and swelling caused her diabetes control to be lost. She was admitted Wed. night for IV glucose, IV insulin and pain meds and antibiotics. After getting a hole drilled in the tooth on Thursday she started to do better but had an incredible amount of swelling in the glands on that side of her neck. By Sunday she was doing better but could only come home from the hospital yesterday as her blood sugars were still not regulated. She was also drinking and peeing way too much. This is a result of there being too much glucose in her blood stream. The body then trys to pee it out but the glucose takes with it alot of water. This is why dehydration can become a big issue for those with diabetes. To give you a little understanding of what we mean, in the 24 hour period from Monday morning to Tuesday morning, Melissa peed 10 litres!!! That is a huge amount. Her blood sugars have been really high still but she is starting to feel much better. She had the root canal completed today and should be back at school tomorrow.

On an Andrew note, he had a pretty good week. Daddy had to take care of him of course with the help of the home nurses. Luckily Andrew's week wasn't too bad, he was between infections. He is getting to go to school a little this week which is good. The kids will be off for Spring Break for the next two weeks.

Monday, March 7, 2005 9:29 PM CST

It has been awhile since our last journal entry. Andrew has had many ups and downs in the past few weeks. He just spent another 5 days in the hospital and just got out today. He fought a couple of bad infections in the past few weeks and then one last week in his bladder really wore him down. He was admitted last Wed. They did a bunch of tests and could not find another active infection at the time. Unfortunately he now does have a couple of nasty bacterias growing in his bladder once again and will be on home IV antibiotics for the next week at least. In the hospital this past week he has had a real increase in night time seizure activity. We are trying to alter some of his seizure medications to try and get these back under better control again. They were using IV ativan in the hospital and it worked well to stop them. We very briefly considered doing an EEG and stuff first but his pediatrician thought that we should make making Andrew comfortable the priority. We make life as easy for Andrew as possible. He is almost 100% certain that it is breakthrough seizure activity so chasing after tests to prove it is unproductive and stressful for all those involved when the end result, treating the seizures and making Andrew "comfortable" is what we would do anyway. The ativan made him have a wonderful, restful sleep.

On a more happy note, we are very excited that the Wiggles, which are Andrew's favorite, are coming to Vancouver and we were able to get tickets for some of us to go. Some of you are probably thinking, "What's a Wiggle??" If you don't have a preschooler or young child you probably don't know. The Wiggles are 4 Australian fellows that sing and dance and make young children very happy. Think "The Beatles" for preschoolers!! : ) Anyhow, Andrew spends many hours watching their DVD's and they always cheer him up when he is in the hospital. In fact the nurses kill themselves laughing when they come in and see Andrew playing his guitar (Usually a colouring book or a video box) along with the Wiggles while lying in his hospital bed hooked up to all his machines. Actually, He currently sat beside me on the edge of the couch now, banging his drum to his new Wiggles Live DVD that we bought him tonight. Anyhow, we can't wait to see his face when he gets to see their show live!

The other 3 kids are doing well. Melissa is such a champion with her diabetes care. She has adjusted so well to the diagnosis in the past few weeks. She never bats an eye when she has to poke her finger at least 6 times a day and gets insulin shots twice. She goes to see her Endocrinologist and her Pediatrician this Wednesday but she is doing well and it hasn't slowed her down in the least.

We hope everyone is enjoying our beautiful weather!

Sunday, January 30, 2005 9:30 PM CST

Where do I begin. The last time I updated Andrew had a yeast infection in his line that we were treating with home IV meds and he had a GI bleed. That was just before Christmas. Well Andrew had a scope done on the 24th and we got home just in time to leave for Christmas Eve celebrations at the families. He seemed to be responding to the antifungal med he was on. The scope didn't show an obvious source of the bleeding. On Dec. 30th Andrew got real sick and we took him to Langley to meet with the pediatrician on call as his doc was away. His blood cultures were still positive for yeast. They decided to start him on a course of drug called amphoteracin. It is a nasty drug that you need to give a bunch of other medications before to help with the side effects. Also one of the major complications of this drug is renal problems. You might remember that Andrew was in renal failure last March so we guard his kidneys very carefully. We tried for 10 days to clear his line of infection but couldn't and finally had to decide to have his VAD line removed. During this whole ordeal in the hospital he also developed a massive bladder infection. He spent 2 1/2 weeks in the hospital and came home 2 weeks ago come tomorrow. He was home from Monday to Friday and then we found out that they could put the new line in! YEAH! So a week ago Friday he had his new VAD inserted and he is infection free. He had some difficulties with his breathing after the surgery and was at Langley hospital last week until Wed. Wednesday he was home on a day pass when our lives took a very unexpected turn........

On Wed. Melissa complained for the 2nd time in a couple of weeks about how thirsty she was and how she had been frequenting the washroom alot. To make a long story short, I called Andrew's doctor to make arrangements to keep him home from the hospital for the night as I had this to deal with with Melissa. We had used a friends glucometer and basically new her blood sugar was way too high. Andrew's doc let him stay home the night and was a real sweetheart and met Melissa and I at the emergency room and ran some blood tests. That same night, Melissa was diagnosed with Type 1 diabetes. She is now insulin dependent. We started a three day intensive training program on Thursday morning at Children's hospital. We have tomorrow to go. Andrew's, and now her, pediatrician has been amazing about trying to make things as streamlined and as easy for us as possible. We are learning how to make a very strict diet and schedule work for her and for ourselves. We have learned to give her insulin injections. She has insulin twice and day and tests her sugars a minimum of 4 times a day. In many ways we are very fortunate, we picked up on her disease very early. Before it had really made her sick. So, life changes once again in the Boettcher household.

I can't really write too much more right now but wanted to try to bring everyone up to date as best we could. You will have to forgive us if your calls and emails are going unanswered right now. We are trying to wrap our minds around what has taken place and trying to figure out schedules in our home. Also, we are trying to spend some time all together, which we haven't been able to do for a while.

Wednesday, December 22, 2004 10:23 AM CST

Hi everyone. I am going to have to be a little bit quick as today is going to be an incredibly busy day. Andrew's hemoglobin has continued to go down which was concerning but we were going to be able to watch and wait until after Christmas. On Sunday he began running a fever and didn't look good. On Monday we had blood cultures grown from his central line along with his other blood work. His white blood count had dropped quite dramatically as well as his hemoglobin going down a bit more. His doctor called last night and Andrew has a yeast infection in his blood. We debated whether he needed to go into hospital last night and decided to wait until today. Partly because, due to lack of beds, they are sending sick kids to Bellingham at the moment. This morning we need to go out to Langley and have more blood work done and he will be started on an antifungal IV drug for the duration of the holidays. We should be able to do this at home. However, if he gets worse we will have to take him in, which with the bed situation will be horrible. Also, there is a 50% chance that they are putting him on the right medication. Only 1/2 of the yeast bugs are sensitive to it. It is going to take them a week to identify the actual yeast growing. To top it all off Aaron woke up with a high fever this morning and has a real bad throat. Martin has run off to the clinic with him before work. So, please pray for the following: That they are able to get the identification done in a timely manner, with the holiday closures, that Andrew is being put on the right drug, that the drug works effectively, that the bleeding will stop and his hemoglobin won't drop anymore, and that they are able to get rid of the infection from his IV line. Otherwise we could loose his central line and have to have it replaced. Also, please pray that things would settle down for him and us for the weekend. We, above all, wanted a quiet, family Christmas this year.

Alison

Wednesday, December 15, 2004 10:05 PM CST

Well a little bit of good news. Andrew's bleeding has started to slow down a bit. His hemoglobin still went down a bit since Monday but we seem to see a decrease in the bleeding we are seeing. That means it is likely the IV med is working. We will continue it until Friday and then he is being switched over to a special acid reducer that will go in his feeding tube. This is a stronger version of a med he is already on and can only be ordered by GI doctors. Hopefully this will help to stop any future bleeds. Although we still don't know what caused this one so it is all based on a theory. But this is overall good news as it is looking like we won't be having to scope Andrew (general anesthesia) before Christmas. Thanks for all your thoughts and prayers. Please keep them coming!

**Be sure to check out our tree decorating photos on the photo page**

Tuesday, December 14, 2004 9:57 AM CST

Yesterday we went out to Langley hospital so Andrew could get the first dose of the IV medication that was discussed last week. This med apparently shuts down acid production completely. At the same time we went to see Judy in Home IV to get this med. she drew blood from his central line. Andrew doctor called last night and his hemoglobin has dropped again. He had already called the GI doctor when he called us and the plan is to wait and see until Wednesday if the new drug is helping. His GI doc wants an update from his pediatrician on Wed. and if the bleeding isn't getting better he will arrange to do a scope. Likely at the end of the week. We really, really don't want him to go to hospital, even for a night, before Christmas so please pray that the bleeding slows down. The other thing his pediatrician did yesterday was make a bunch of calls about the easiest way for us to get this IV med every day for Andrew. We can't do it at home because the drug only lasts 6 hours once opened so they have to make it and give it basically. He has talked to someone he knows at Peace Arch who can do it there. They don't usually do kids but she is more than willing to help make things easier for us by making it possible for us to go to Peace Arch each day instead of Langley. We will need to go in for about an hour each day to get the medication. His doctor also wants blood work done every couple of days to keep a close watch on the hemoglobin level. So please pray that the bleeding stops, that he doesn't need to have a scope and that he will be protected from all those nasty bugs that are out there in the hospitals right now. With all the going back and forth to the hospital we are a bit concerned about this.

Friday, December 10, 2004 10:00 PM CST

Well Andrew has had one full day on his anti ulcer med. So far there has been no change in the bleeding in his tummy. We will wait through the weekend, unless things get worse, and move on to plan B on Monday. His doctor called this evening to check on him and we have decided to likely do another hemoglobin check on Monday. We will also move to trying the new IV anti-bleeding/ulcer med on Monday if he doesn't show a definate improvement over the weekend. The good thing is that we should only have to go over to Langley Hospital for a few hours. To draw the blood and to administer the first dose of the med in the hospital after that we are hoping we can do home IV for it. So we continue with a wait and see approach. I ran into another Mom today that we met while Andrew was in for dialysis at Children's in March. Her little boy Andrew is 4. He has had 3 liver transplants already and has very complicated medical problems also. We spent time chatting while the two Andrews were in hospital together back in the spring and we have run into them a couple of times in clinics etc. Today we ran into each other at a local Mall. We spent 45 minutes chatting and comparing notes on our very complicated lives. They also walk on eggshells with their son, not knowing what is going to happen next or how serious it is going to be. They are also a Christian couple. Andrew is their only child. How wonderful it is to have a conversation with someone who truly understands. It was a blessing to see her and we had a wonderful talk in the entrance to Purdys!!

Melissa is off at a special basketball game. Her Y team is playing the grade 5 White Rock Christian Schools grade 5 team during the Warriors (WRCA high school basketball teams) half time break. Martin has gone to watch. It should be fun. The other girl on her team couldn't go and I think they are playing an all boy team. That means Melissa will be the only girl playing at the whole thing!!! I told her to do us women proud!! :)

Thursday, December 9, 2004 8:29 PM CST

Wednesday morning Andrew's doctor was finally successful at drawing his blood. This morning he called to let us know the clotting times were ok and his hemoglobin had dropped a bit but not too much. He spoke with the GI doctor and they have started Andrew on an antiulcer med for a week to see if that helps. If it doesn't, then there is an IV antiulcer med we can try next week. They will also draw more blood next week to see what his hemoglobin is doing. He had two more bad bleeding spells today. During one his nurse coordinator was here and she was quite alarmed at the amount. She was going to call his doctor to discuss it with him. We will hope that this med does some good and that the bleeding stops. When we do blood next week it can be taken from his central line which is a breeze! Please continue to keep him in your prayers.

Alison

Tuesday, December 7, 2004 6:58 PM CST

Christmas is fast approaching. We decorated for Christmas this weekend. It is nice to have all the lights and music and a festive atmosphere in the house.

Well we are still needing prayer for Andrew's blood work. We have had 4 failed attempts at getting the blood drawn for these clotting tests that he needs done. How very frustrating. The one time his doctor drew them (after 45 minutes) he got the blood, then the lab wouldn't do the test because they said he didn't put enough in the tube. Poor Andrew has become a bit of a pin cushion. We will try again later this week. These tests absolutely have to get done because we are having alot of troubles with Andrew bleeding in his tummy somewhere. He has been struggling with a cold for a couple of weeks now. It tends to come and go but he hasn't made a real recovery from it yet. He hasn't been to school since the beginning of last week. Today we had to go down to Children's. They attempted to draw his blood there (the 4th failed one!) We also had to pick up a different type of cardiac screening monitor. Hopefully this one will be more successful in picking up his accelerated heart rates. The other one was too difficult to fit on his chest properly with all the bandages from his central line in the way. Unfortunately, he has missed alot of the school classes practices for the Christmas concert at school so I am not sure if he will participate or not. We also haven't been able to get to church for the past few weeks due to this cold/flu bug doing it's rounds in our house. Anyhow, it isn't a huge update but just wanted to let you all know how things have been. If you take a peek at the pictures page, there should be a couple of photos taken this weekend during our decorating spree.

Friday, November 26, 2004 9:25 PM CST

Well we actually made it to Whistler for Martin's birthday. It was lovely. We stayed at the Chateau Whistler and it was great. Fairmont hotels, which own the Chateau, donate a certain number of rooms for one or two nights, to families with seriously ill children that are using Children's hospital. They give you a lovely upgraded room, parking and an amazing buffet breakfast. If you are ever at a Fairmont hotel please drop the management a note and thank them for this very much appreciated gift to many parents in BC who could use a weekend away. Anyhow, we had a nice dinner, roamed around the village (and could actually go in the stores without kids yanking at us to go!).

To bring you up to date on Andrew now. He has had some problems in the past two weeks with bruising and bleeding. Last Friday the home IV nurses came and drew some blood samples from his line to run some clotting tests etc. That same night we received a very concerned call from the lab doctor because Andrew's sample wouldn't clot. She finally was able to reach Andrew's doctor on Tuesday and it was decided that perhaps the sample had been contaminated with heparin that we use in Andrews line, therefore, causing the problems. We had to go to day to have the blood drawn from a vein instead of through the line. Unfortunately after repeated attempts the lab techs were unable to draw Andrew's blood. It is a problem we have had with him since he was little. No one can explain it but they just can't get the blood down the tubing. His doc has come to our rescue again and will meet us at the lab on Tuesday morning to draw the blood himself. So please pray that this is successful and there are no problems. The other concern right now is that a nasty cold is going through our home right now and Andrew (and myself) have finally been hit by it. Andrew's oxygen levels have been low the past couple of night making it necessary for us to increase his oxygen levels. It also means that we have had little sleep the past three nights due to bells and whistles going off on the machinery during the night. We will try and see how the weekend goes and if he is still struggling Monday we will do a chest xray to ensure that he hasn't got a pneumonia again. So we would ask that you keep these issues in your prayers for our little guy over the next few days.

Tuesday, November 16, 2004 9:26 PM CST

This past weekend I was able to attend the "Women of Faith" conference in Vancouver. I attended with about 15 other women from our church. What a blessing. How awesome it is to stand with a crowd of 10,000 other women and sing and laugh and learn. 10,000 women singing to the Lord is something that brings tears to the eyes. What an awesome sound it was. The speakers were incredible. What gifted women they were. Patsy Clairmont is so funny and I found Thelma Wells to be such an awesome woman. She reminded me of a woman that is everyones grandma. They shared stories that were close to their hearts and it touched us all. It was nice to spend an overnight with some women from the church that I wouldn't necessarily spend alot of time with. We all have different age families and different careers. It was so good to sit around and chat and get to know some of these ladies a little bit better. Monday night was the annual Christmas in November evening at our church. It was once again a lovely evening. For those who don't know what it is, every November we have a special ladies evening. Around 350 women attend. The church is turned into a magical Christmas setting as individual tables are decorated and set with good china etc. that each hostess brings. The church just glows. There is a craft sale, dessert and a speaker. This is about the 3rd year I have hosted a table and I was thrilled to have 7 ladies of the 9 of us at my table that were not ladies who attend our church. Two of the ladies that joined me for the evening were two of our pediatricians receptionists. Everyone seemed to have a lovely time. Anyhow, you didn't come here to read about how my social schedule improved this week did you??! How about Andrew you are probably thinking.........Well, he has had a pretty good week. He has been stable. His nighttimes haven't been too bad. Is is strange because I say he hasn't had a bad week. In fact, quite good. However, for us that means that nothing shocking happened, not that he is OK. He still has his oxygen every night, he still has apnea spells, he still has his IV and feeding pump on the go continuously while he is at home. So OK means different things to us than some may think of as OK. Whew, hope that isn't rambling. He received a pneumonia vaccine today which, will hopefully, help him to be less succeptable to pneumonias. The one he had a few weeks ago he picked up so easily that it made us a bit nervous so we had it done. Other than the fight at the time of the injection he seems to have tolerated it quite well this evening. Andrew is enjoying his time at school when he is there. He has a laptop computer that he uses when he is having a hard time focusing. He looks so cute sitting at his desk working on his laptop. He can now recognizes all the numbers between 1 - 10. He is also getting better at copying his name. Before he could only do A's and then they were often upside down!: Now he can copy out most of the letters that spell his name. He adores his aid, Miss Lee is wonderful to him.

Just a few closing thoughts. I have spent alot more time reading this year than for the past several years. All of Andrew's time in hospital leaves one with not much to do so I have been reading more. Now I am not happy unless I have a good book on the go. The one I am currently reading is called "Let's Roll". It is the story, as written by his wife Lisa, of Todd Beamer. He was one of the "heros" of the 9/11 hijackings. In the part of the book that I was just reading Lisa is talking about her upbringing in a strong, family oriented, Christian home. Her father being the centre foundation. He died very suddenly when she was only 15 and she talks about her faith in the days after this event. Many people would quote scripture to her, one of the verses that she (and we) have had quoted many times is Jeremiah 29:11 "I know the plans I have for you, declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and future." These are her thoughts on this verse during a time of tragedy in her life.

"Although I didn't fully understand the ramifications of those words, they provided a candle of light to help me through an extememely dark passageway in my life. Eventually I came to realize that God kew what was going to happen to my dad. He knew the difficult circumstances my family would face and yet, for some reason I still can't comprehend, he chose not to change the course of events. Slowly I began to understand that the plans God has for us don't just include "good" things, bu tthe whole array of human events. The "prospering" he talks about is often the outcome of a "bad" event. I remember my mom saying that many people look for miracles-things that in their human minds "fix" a difficult situation. Many miracles, however, are not a change to the normal course of human events; they're found in God's ability and desire to sustain and nurture people through even the worse situations. Somewhere along the way, I stopped demanding that God fix the problems in my life and started to be thankful for his prescence as I endured them."

It is food for thought. I can't say that I am necessarily at that place of acceptance of the situation that our family has been given. However, it is in reading the stories and hearing the words of others (as in the speakers this weekend) that have walked through terrible and tragic events that we can learn and hopefully, understand just a little bit more.

Wednesday, November 10, 2004 10:15 PM CST

Well I guess I didn't update quite as soon as I would have liked to have. Andrew didn't get over that cough that he had last time I updated. He ended up with pneumonia in one lung and starting in the other. He spent 5 nights in hospital-which actually isn't bad for him! He had some bad apnea spells while he was in the hospital but has settled some since coming home. He is on his oxygen every night and that helps to keep our nights a bit quieter. His monitors don't ring off if we keep his oxygen levels adequate. We also have a new nurse that has started with us that does nights. She is scheduled for the night of the 20th and then we will have her overnight now and then to care for Andrew while we all sleep. He has been at school this week. Two mornings and one full day. That was pretty good. He will be home now for the rest of the week. He has started to get another cold so we need to just pray that this one stays out of his lungs. The other one moved so fast. On the 20th we are actually leaving him overnight here at the house with a nurse. The other three kids are going to Aunties house and Martin and I are going up to Whistler for the night. Children's hospital offers a respite program and they offer families with Critically Ill children one or two nights at the Chateau Whistler. So we are taking a night and heading up there. (SSSHHHH.....It is Martin's 40th Birthday that day!! I am looking forward to going to the Women of Faith conference this weekend with a group of ladies from church. We are spending the night in Vancouver on Friday so I would ask that you pray that Andrew is ok as Martin will be home alone with the 4 kids on Friday night. So there are a few good things happening. We are trying to readjust to a new "normal" again. However, each time we think we have our new normal mastered, things changed again. I found this poem on another special childs website and thought it was inspiring and helped a little. Sometimes the "whys" and the "how comes" can be a bit overwhelming.


THE CHOSEN ONE

I had a dream the other night
It came to me so clear
I stood before the throne of God
Afraid to come to near
God said to me "I hear your prayers"
There's answers you can't find
I asked you here to talk to me
And help to ease your mind
I said "well yes God I am upset"
About my special one
This punishment is awfully harsh
What ever have I done?
God looked at me and shook his head
and said you've got it wrong
I sent this special child to you
because you are so strong
I searched and searched to find someone
With love so rare
A parent so unselfish
That could give that special care
I try and save my special gifts
Like those you're speaking of
For special kind of parents
I call the "Chosen Ones"
Of all the ones to choose from
think this I have done
A parent who deserves the best
An honor you have won
~unknown~

Thursday, October 28, 2004 3:09 PM CDT

Well it looks like the fall weather has arrived...

Andrew has been struggling some this week. He started at the end of last week just having less energy and not being himself. Saturday night, while we were out of a "date night" he started to develop a bad cough. He struggled with a worsening cough as the week progressed. Tuesday we went and did a chest xray. Last night his doc called to say that there is some evidence of a pneumonia on the xray so we are trying an oral antibiotic. We are hoping we can get through this one without a hospital visit but we will just have to see. We may need to switch him to an IV antibiotic. Having his oxygen at home has saved us up to this point with this illness though. If we didn't have it at home he would have ended up in hospital last weekend.

The other new thing that is occuring is that Andrew is having episodes where his heart starts to race. His pulse rate shoots up to between 180 and 220 for no real reason. We have a portable cardiac monitor at home for the next 2 months to try and catch some of these episodes when they happen. We will see if they are dangerous or just an annoyance.

We were blessed with a new bed this week. I know that sounds funny probably but our bed has been through 15 years, 4 pregnancies and countless jumping episodes (the kids, not Martin!) It had really just about had it. Well, through someone who knew someone we got a wonderful brand new bed last night. Sleep Country can not sell their beds that are "damaged" (this one has a tiny tear in the box spring paper stuff that covers it). They like to give them to people who can use them. So it is wonderful. I could have stayed in bed all day today! (Life dictates that isn't going to happen). Although I do think God has a sense of humor sometimes, or he expects us to. As this bed is walking in the front door, the microwave died completely!! Very funny Lord, what next!! : )

The kids just finished a productive cross country season. It is only 6 weeks which is nice. Due to nurses coming into our home I was able to attend all 6 meets. I think little things like that mean alot to them. Matthew and Melissa are going strong with their Basketball season. They have both really started to excel. They have Tuesday practices and their games are Friday nights. Last week and this week we have had a nurse on Friday night so we are all able to attend the games. Aaron is doing very well at soccer. His practice is Tuesday night also (Tuesday nights are a right off in our home right now!) His games are Saturday morning and in his second game he scored a goal. By the way, another big event in our house this week is Aaron got his first pair of glasses. He has just started to need them. So if you see Aaron in his nice new blue glasses. Tell him how good he looks!!

Take care all.

Tuesday, October 12, 2004 10:59 PM CDT

I must be on a role. I've been updating Andrew's page a little more regularly. Well we made it out of the hospital from the sleep study on Friday morning. We came home very tired but had a lot to do if we were going to get away for the weekend. On Friday I had to have an hour and a half of teaching for Andrew's new home oxygen machines. He has a concentrator which is a big machine the size of a shop vac that he receives his oxygen through while we are at home. Then we have 5 oxygen tanks for when we need to go out and he needs supplemental oxygen. It was a bit overwhelming but we are adjusting to the new machinery. We did escape up to Whister for the long weekend and it was good. The weather wasn't great but it didn't matter. We spent time doing simple things like going for walks and playing board games. The things that you always want to do at home with the kids but never seem to make time for. We also had 3 meals a day at the same time at the same table!! That is unheard of when we are home!! We also spent some time with Martin's sister Rita and her family. It was a very pleasant weekend. We came home yesterday and had a second turkey dinner with my family.

As I close I would ask that you keep some dear friends of ours in your prayers this week. John and Christine, friends of ours that live in High River, Alberta lost their 5 year old son yesterday morning. He died of a disease that really didn't have a name either. Much like Andrew's. Ronan was an amazing little boy with an infectious laugh and eyes that would melt your heart. His body failed him from birth but he had an amazing spirit about him. So please pray for John and Christine and their other three children, Elspeth, Dugald and Bryden. Ronan is now playing with his brother, Callum, in heaven.

PS You can find a photo of Christine, Ronan and his sister Bryden at the link attached.

http://www.crha-health.ab.ca/frontlines/Frontlines68.pdf

Thursday, October 7, 2004 5:47 PM CDT

A little preThanksgiving weekend update. Andrew has been in the hospital since last Thursday. Unfortunately he was having a real difficult time with his oxygen levels at night and he was also suffering from a couple of different infections of his vesicostomy site. He is just coming to the end of a course of 7 days of two different IV antibiotics. The other thing was that he was requiring oxygen right through his stay at night. Last night was certainly much better but we know that with the next "crash" that Andrew goes through he will likely run into the same issues with his oxygen levels. This sped up the process of getting some type of supplemental breathing help at home for him. Our pediatrician went to bat for him and has him approved for an air concentrating machine. I don't know the technical term for it but it takes room air and concentrates the amount of pure oxygen in it and blows it into Andrew through nasal prongs. Basically the same as oxygen would. This won't give us the exact same help that oxygen tanks would but the explosive hazzard in the home is far less. The other thing we are doing is that tonight we are going to get the sleep study redone that was done at Children's and lost back in September. They will do his IV antibiotics etc. right in the ICU unti where the sleep study is being done. Tomorrow we will have to go back over to Langley to make some arrangements for some home IV antibiotics through to Sunday. This week Andrew's central line began to give us lots of troubles and almost got to the point where it was useless and we were thinking it would need to be surgically replaced. Well today we had a study done of it and it is MIRACULOUSLY functioning just fine at the moment!! : ) .......hhmmmmm, fluke or the power of prayer!!!???? This was becoming a huge concern for us as this line is used everyday and he would need to have IV lines started in his hands if we had lost his VAD line. Anyhow, keep the prayers coming that it is indeed resolved. They have said that whatever was causing the problems could just as quickly reappear. We are going to head up to Whistler for the long weekend to spend some family time together (what a concept!!) and also spend some of the Thanksgiving weekend with Martins sister and family. We need a little getaway right now. So please pray that everything goes just as we have planned in the next 24 hours and that we can make this little trip a nice one.

Friday, September 17, 2004 11:40 PM CDT

Wanted to post a quick surgery update. I know many of you have been praying and calling. I am sorry if we haven't been able to talk to all of you who have called. It has been a little crazy here as you can imagine. The surgery was done on Wednesday morning. In fact he actually went in for the surgery 45 minutes early. The surgery itself was about one hour. The surgeon put a camera into the bladder and made sure there was nothing they could structurally fix that could be causing the retention problems. There wasn't so they did the vesicostomy. He went to recovery and had a lot of problems with pain and they ended up giving him a fair amount of morphine. Unfortunately, he had 9 apnea episodes while awake over the next several hours. He ended up having a reasonable night though. He stayed in the ICU but we had an isolation room so that was nice it was a little quieter. We left Children's yesterday morning and came home for a few hours before going to Langley. We are very blessed. A nurse that adores Andrew, and has become like a friend, came into work even though she is on a leave for education right now. She came because there wasn't enough pediatric staff in Langley to take Andrew, so she went in just for him! So he did spend the night in Langley last night and we both got sleep, which was great. They gave him IV nausea and pain medication all night so he was very comfy. We came home today on a "pass". Our bed will be held until tomorrow, in case we have set backs tonight. He had a reasonably good day today though so we are "cautiously optimistic" that he won't need to go back tomorrow. Thank you everyone for your thoughts and prayers. They are so very appreciated.

Wednesday, September 15, 2004 8:49 AM CDT

Hi everyone. Well today is Andrew's vesicostomy surgery. It is currently scheduled for 11:30am this morning. The surgery itself is 1-1.5 hours long. Andrew's cold is now under control, which is great. He has been going to school in the mornings this week and really enjoying himself. There is no way we were going to attempt a full day right before surgery. His repeat blood cultures came back negative which is wonderful. That means that the IV antibiotics we have had him on for two weeks worked. Anyhow, I have to pack and do a bunch of things but just wanted to let everyone know what was happening. If all goes as planned we should be home on Friday.

Monday, September 6, 2004 9:13 PM CDT

The last journal entry we made was February. It is not that we don't want to keep everyone up to date as to what is happening with Andrew it is finding the time to sit down and do it. I won't go back and rehash each week of the past 6 months but I will try and highlight some of the ups and downs of Andrew's past 6 months. Then I will try and bring you up to date as to what is currently happening with our little man.
-In our last entry Andrew was due to have surgery the next day. That was cancelled due to infection. While recovering from that infection Andrew went into Acute Renal Failure. His kidneys completely shut down and failed to produce urine or remove toxins for almost three weeks. He was placed on dialysis and his kidneys slowly recovered. We are so thankful that at this point in time Andrew's kidneys are functioning as well as they were before the renal failure. What a blessing when we were told the likelyhood of that was slim. Andrew doesn't read the rule books however.
-In April we went on a trip with Make A Wish to DisneyWorld in Orlando, FL. (Check out photos on the photo page) We had an absolutely amazing time. It was truly memorable and the trip of a lifetime.
-We returned to a "new" home. Some very special people came in and renovated the whole downstairs of our home and backyard. It was an amazing transformation. It makes home a nicer and more serene place to be now. When I get out of the hospital after spending many nights there with Andrew, it is a pleasure to come into our home.
-Andrew had his fundoplication surgery in May. That is the surgery that was scheduled for Feb. but moved. This surgery has made it basically physically impossible to vomit. It also makes it very difficult, if not, unable to burp also. It was a wise decision but we have had some difficulties getting adjusted. After a hard 6 week recovery time we are now seeing the benefits.
-Due to Andrew's nervous system problems one of the problems he has is that he can't release his bladder. The brain doesn't send a message to the bladder muscle to release. Originally when this started it would only happen when he was in "crisis" during his periods of being unwell. Now it is happening all the time. He has had an indwelling catheter since about June and each time we try and remove it we have to hurrily put it back in as the retention would be very uncomfortable as I am sure you can imagine. After much prayer and consideration and discussion with Andrew's doctors we have decided to have a special surgery done. A HUGE problem for the past 8 weeks straight is infections in his bladder because of the catheter. Andrew has been on home IV antibiotics and in and out of the hospital since June because of this. The type of infections he is getting now and not easily treated and he has reacted to antibiotics recently so our options are limited. Next Wed. Sept. 15th Andrew will have a surgery to place an opening in his abdomen just above his pubic bone. This is where his urine will drain from into a diaper. This will, or should, almost eliminate infections, he won't have to carry a catheter bag everywhere and his kidneys will remail protected. He will spend one night in the ICU and then will likely spend a night at the local hospital also.
-One of the things that has come to light in the past months of so is that Andrew is now having sleep apnea issues. Unlike when you wake up choking and sputtering at night because you feel like you are choking, Andrew's is because his brain "forgets" to tell his body to breathe. They are lasting 20-30 seconds at a time and on a good night he has none, on a bad night 12 or so. We now have a montior in our home that rings at night when this happens so we can go and stimulate him which then causes his 'brain to wake up'. He is currently waiting for some tests to be done to see if he is in need of having oxygen in the home for times when this is bad.
-This past 9 days Andrew has been in the hospital for a blood infection. He got really quick quite suddenly a week ago Saturday night and we took him to the hospital. He grew a rather nasty bacteria in his blood. He came home today (although he is technically on a pass at the moment). He will continue on IV antibiotics at home until a day or two before his surgery next week. We really need to rid his body of the bacteria because if we can't get rid of the bacteria in his permanent IV line it would mean they have to take it out. It would also mean that we would have to replace it as it is a bit of a lifeline for him.

To end this all on a more positive note. Andrew turned six on August 19th and we enjoyed a quiet weekend party with family and friends that were visiting from Calgary. Tomorrow marks a big day-Andrew starts grade one! He will only attend part time likely as he won't have the endurance to manage full days. He has nurses that come into the home some afternoons a week so that I (Alison) can get out and do some of those things that are a little difficult to take a child with an IV, feeding pump and catheter bag to!!

We wish you all a wonderful back to school(If that applies to you) and a great Fall.

(I hope there are no big spelling mistakes in this because I am too tired to go back and proofread it tonight! After 9 nights on a hospital cot I can't wait to climb into bed with a good book! Goodnight!)

Tuesday, February 17, 2004 8:56 PM CST

Well, tomorrow is Andrew's big surgery day. We received a call today and the surgery is at 12:45pm and will last close to 4 hours. We need to be at the hospital at 11:15am. Thanks to many of you for offering to bring meals, watch kids etc You are wonderful. What we would like most right now is your prayers. Please pray that Andrew comes through with flying colours and that the surgery is a resounding success. Martin will try and update the site. (I will if there is a parent computer at the hospital). Also, please pray that there is no last minute cancellation due to bed's being full at the hospital. The Opthamologists will be looking in Andrew's eyes during the surgery to see if there is a reason they seem to bother him so much sometimes. Also, a muscle biopsy has been arranged. This is Andrew's second one. His first was when he was 2. They test for certain diseases called mitochondrial diseases among other things. Also, they are testing for a special disease and a piece of his muscle will go all the way to New York to be tested. We will update you all as soon as we can.

PS Some very special "mystery" friends from our church blessed us in an amazing way today. To whoever you are, THANK YOU, you have no idea how moved we are and how much of a blessing that gift is at this time.

Thursday, January 29, 2004 5:41 PM CST

It has been a long time since we updated. So much has happened it is impossible to summarize it all. I am going to be fairly brief or you would be there all night reading. Andrew had a horrible November and December. His GJ tube, that we had hoped would really helped, caused a huge amount of grief. Whether it be an allergy to the material or an abscess that they saw on ultrasound it was a miserable two months for Andrew. He spent 4 of 5 weeks in those two months in the hospital on IV pain medication. In mid December the decision was made to take the tube out and, quite by accident, Alison and a nurse at the hospital pulled it out! (It was honestly an accident too!) Andrew was then able to go home for what was supposed to be 2 weeks before getting a new tube put in but it was only 5 days. Unfortunately in mid December Andrew had a very bad respiratory bug that caused a nasty croup flare which in turn set his asthma off. We spent the week leading up to December 22nd in the hospital trying to get his lungs in ok shape before his surgery on the the 22nd. We were successful and Dec. 22nd he had his tube fixed and a VAD placed in his chest. A VAD is an iv line that is buried in his chest. It is accessed with a small needle and should greatly cut down on the amount of trauma, etc that Andrew has during his hospital stays as he always has IV access. They can also draw all of his blood tests etc from this site. If you have known someone receiving chemotherapy, this is likely something they would have had. We rejoiced in the fact that Andrew was home on the 23rd in time for Christmas. We also had two weeks at home before he went back in again. Which may sound like a small victory but, it was a victory.

As for the current, Andrew is breaking molds and is changing peoples thinking in terms of how chronically and seriously ill children are managed in our area. We pushed very hard to have the hospital give us the ability to give Andrew IV fluids at home so that he can be at home more. It is something that had not ever been considered for a child in our area, therefore, Andrew was breaking ground. It took some diligence on many peoples parts but it was set up. Now Andrew will spend the first 3-5 days of a crisis in hospital but then will come home and continue his care at home. He also has nurses that come in to the home to help with his medical care. They come for 16 - 24 hours a week and so far it is good. It gives me the ability to go out and still leave his IV's and that running while he is with someone who is caring for him.

Earlier this month, we had an appointment with the metabolics doctors at children's. They are ensuring that any tests for a global diagnosis that could have been done, have been, and that if they want more testing that they will do it on February 18th when Andrew has surgery.

On Feb. 18th Andrew will have a fairly major abdominal surgery called a nissen fundoplication. In laymans terms, it will stop his ability to vomit, also to burp (unfortunately). We will learn management techniques on how to help him with these issues. It should enable us to get more food into him, thus greatly improving his nutrition. He will be in the hospital for approx. 5 days with the first 24 hours being in the Intensive Care Unit after his surgery (which is about 4 hours). I know many of you will ask if you can do anything for us that week. Meals would be wonderful, especially freezer meals that Martin can throw in when he gets home from work. We may also need help with getting kids to their basketball games etc. on the Friday night. We would certainly love it if some of you can give us a hand that week. Being that he will be out at children's there is alot more travel time involved for Martin.

Our wish trip, which should have been this week, had to be postponed. Martin's permanent residency card was not ready until this week. So, we were unable to go. We are going to rebook though and are hoping to go at the end of March if all goes well.

Although Christmas was trying this year we can not say how blessed we were. Our church family, Martin's employer, our school. Everyone was so good to us. I couldn't even list all the ways that people reached out to us this year over the holidays. We literally were at a loss for words due to everyones generosity and caring.

One amazing example of this is our new addition. (Got you all worried don't I!!) It is a 1992 Toyota Corolla 5 speed. Our second van (Martin's commuting vehicle} died the week before Christmas. The cost to fix it was far more than the vehicle was worth. I, of course, have to have the big van for transporting Andrew's wheelchair. Well, our precious friends at Focus on the Family, Martin's work, decided that they wanted to help out. They took a "collection" at the office and, to everyone's astonishment, raised enough money to buy this wonderful car. It is in great shape and is very reliable and not bad to look at! I'm even thinking of taking it and a child, at some point in the next few months, down to Oregon to visit some friends I haven't seen in many years! (If that's ok with you, Jamie and Ilene?!)

Anyhow, that is just the beginning of what we have to say was an amzing Christmas. Thank you, to each and everyone of you, for playing a very important part in this years holidays for us.

Saturday, November 15, 2003 10:14 PM CST

Two updates in a week!!

Unfortunately Andrew has not been having a good week. His g-j tube site has been giving him alot of pain. It escalated to the point that yesterday we took him to his doctor because he wouldn't stop crying and wouldn't move. He very quickly prescribed a very strong pain medication. He also got on the phone to the surgical department at Children's as he was concerned that Andrew had an abcess under his tube site. We met them down at the Emergency department. They didn't feel it was anything that could be fixed surgically. So we headed home again with no answers......what's new. I spoke again with his pediatrician on the phone last night and he said for the weekend to make his pain management a priority. At the moment we have hime on his demerol every 4-6 hours along with tylenol and gravol for queasiness. This is on top of the other 6 medications he is on regularly. We are also continuing with an antibiotic that he is on frequently for tube infections. However, if it is infected, which I am 99% sure it is, the infection is not sensitive to this drug or it would have worked by now. We will talk to his doctor again on Monday. The only other option in terms of antibiotics is IV antibiotics. We aren't overly keen on that for obvious reasons, it would be another hospital admission. We will if we have to but....... So you can pray that the tube pain would resolve, that the demerol would continue to keep him somewhat more comfortable for the weekend, that the "infection" or whatever it is would go away. There is nothing worse than having a child in pain, it is by far the most helpless feeling.

Tuesday, November 11, 2003 8:31 PM CST

Believe it or not I wrote a big update about 2 weeks ago and it got lost in space somehow. It has taken me all this time to find a few moments to sit down and update you all.

The last update was from August so, obviously alot has happened.

First, Andrew started kindergarten this September and he has been adjusting quite nicely to his new classmates and classroom. He has a wonderful aide who is very attentive to his needs. So far, except for a few bugs, everything is going well in terms of his support in the classroom. It is strange having all 4 kids at the same school now. They got their school photos yesterday and I can't help be amazed at how quickly they are growing up.

Since the last update Andrew has had two more hospital admissions. One the first week of September (10 days) and one starting the Thanksgiving weekend for 16 days. Needless to say the last couple of stays have been very trying as the duration of his hospital stays have been longer. During the last one we made a decision to change Andrew's feeding tube. Now he has something called a gastrostomy jejeunum tube (you will hear us refer to it as his G-J tube). The tube goes in the same opening as his gtube used to go but now the inside tubing is threaded down into the jejeunum. That is the second part of the small bowel. So basically when we tube feed him we bypass his stomach and feed lower down. It has taken some adjusting to. He now has his pump running basically 24 hours a day. It was our hope that he would not be able to vomit formula up if it was placed further down. Unfortunately we quickly found out that he can still manage to throw up from where his tube is feeding him. The big question will be can he keep in enough during a crisis to keep himself hydrated.

The other big thing that came out of the last admission was discussions about putting a central line device in Andrew so that they don't need to continually poke him for IV starts etc. We gave this some thought and have decided that it is the easier thing for Andrew. Sometime over the next while we will meet with the Surgery department to discuss this and also the fundoplication surgery, which we are still contemplating.

Due to the fact that his last stay was so long, it is taking Andrew a long time to regain his strength. He is slowly doing a little better but this past week he has had a lot of discomfort from his tube and he also developed a bladder infection. It is always something.

His wheelchair was in need of some more supportive seating etc and the request has gone in to the At Home program for these. We are waiting to hear if he will get approval.

At last, but certainly not least, we are going on our Wish trip to Disney World on January 28th. To say we are looking forward to it is an understatement! We can't wait!

Saturday, August 9, 2003 8:54 PM CDT

Well, what a week it has been. To cut to the chase, Andrew and Alison flew off the island on Tuesday noon because Andrew needed a hospital admission. He was released for a pass today and we will see how tomorrow goes. Andrew was grumbling along right before we left, as you know. On the ferry on the way to Nanaimo on Sunday morning his doctor phoned to say that his last urine sample had grown a bug called pseudmonas. The problem with this bug is that it can only be treated with IV antibiotics and it is hard to get rid of. He told us that if Andrew got worse that we shouldn't push through the week but consider bringing him back for treatment. He later told me that he wrestled with actually telling us to bring him back right away. Monday Andrew got worse and by Tuesday he was really not doing well. We called his doc and he made arrangements for an admission to Lanley for IV antibiotics. We were going to have Martin take me on the Thetis Island-Chemainus ferry and then drive me to Nanaimo where I would walk Andrew on the Nanaimo Tswassen ferry with his wheelchair and have someone meet me. The staff at Capernwray found out what was going on and quickly made arrangements for Andrew and I to fly out on a sea plane that was leaving shortly. They took care of everything. They were wonderful. Andrew and I flew back and it was a beautiful flight. The weather was glorious and the gulf islands were stunning as we flew over. Anyone who knows me, knows that I am a very nervous flyer. I don't even consider flying anything smaller than a 747. This was quite a test of overcoming fear for me! We got to the hospital mid afternoon and after two failed attempts at an IV start decided to wait for Andrew's pead. to come do it. We also gave him Medazalan to sedate him as he was so upset. Unfortunately, Andrew's veins were not cooperative and it took his doctor 3 trys to get it in. Although, with the sedation, Andrew cared a whole lot less. They also put a foley in and redid the urine culture. He was started on two heavy duty IV antibiotics for the infection. Wednesday he had a terrible day, he had sudden drops in blood pressure, his heart would race, he had a strange seizure and he vomited bile most of the day. Thursday morning the urine culture came back negative, meaning he had fought the pseudmonas on his own (a good thing). I was discouraged thinking we had rushed home and didn't need to. However, his doctor said that based on how sick he was he needed to be in regardless. It would appear that it was just an Andrew crisis again and that, possibly, him fighting the infection threw him over the edge. Yesterday Martin and the kids came home. (They had a wonderful time) We also went to Cirque du Soleil last night. Amazing is all I can say! So we came home this morning and are praying that he doesn't need to go back but I am not convinced that we won't need to go back if for just Sunday night for some more fluids. So, it was not a relaxing week away. Far from it. I am very glad that Martin and the kids were able to stay at Capernwray though. They really had an amazing time and all of them can't wait to go back next year.(hhmmmm, have to gear myself up for that one!!)

(CHECK OUT THE NEW PHOTOS ON THE PHOTO PAGE FROM THE VACATION )

Saturday, August 2, 2003 9:49 PM CDT

Well, we are off tomorrow until Friday. We are really, really needing this little break and we are hoping that it is just that-a break. We have fought hard to keep Andrew's catheter out this week. We took it out on Thursday morning and he is peeing some on his own. He is still retaining lots but he is able to release down to half way between his pubic bone and his belly button. Still holding a significant amount but at least it is something. So we will pray that things don't get worse this week.

On Tuesday we saw the GI doctor at BCCH. He has know Andrew and ourselves since Andrew was 8 months old. It had been 2 years since we had last seen him though. He was actually reasonable for a change. If you knew him you would understand what I mean. I have always said he talks and sounds like a New York Taxi driver. Well, he is proposing a couple of options. One is to try a G-J tube. This would utilize the same "hole" that his gtube is in but it would be threaded down to the jejenum (sp?). It is in the small intestine. He would be fed into this tube on a continual basis. There are many drawbacks to this as well as plus's. The largest drawback is that he would have to be fed continuouslly and we would have to all but eliminate his oral feeding. Not a good choice we believe. After we tried the g-j tube, if it were successful, they would insert a J tube. He would have a second "plug" in his abdomen below his gtube. The other option is something called a fundoplication. They would basically make it physically 'impossible' for Andrew to vomit. They would also make the exit to his stomach wider. This would, in theory, cut down on his hospital admissions, because he technically shouldn't be able to get dehydrated. He would be able to eat normally with his supplemental tube feeds. This sounds like a better plan however, there is a catch. First, it is a more major surgery. Second, before Dr. S. (GI) will suggest this formally Andrew needs to have a gastric emptying study (scheduled for August 14th). This is a test where they put 'nuclear' liquid in his stomach and basically take a series of films every 15 minutes or so, watching to see how long in takes for the stomach to empty. This tests something called "motility". If Andrew's motility is very bad the fundo. would not be a good option. It would be like pumping water into a balloon with no exit basically. If his bowel is not taking what we are pumping in and moving it through it could cause him a great deal of distress. So, we will wait and see which one the GI feels would help us most. Most of the discussions these days are about "quality of life" not cure, which we know is what we need to do for Andrew right now. It is however, difficult to comprehend. Andrew's pediatrician continues to be unceasing in his support and care. God really knew what he was doing when he placed this man in Andrew's life.

Well, off to finish packing (How much stuff can 6 people really need!!!) YIKES-it has been an all day ordeal.

On Friday when we return we go straight to Cirque du Soleil in Vancouver. We are really looking forward to that also. Bon Voyage!!

Friday, July 25, 2003 3:33 PM CDT

On Tuesday morning we removed Andrew's foley catheter. It had been in since the previous Tuesday. We had high hopes that he would begin peeing. By Wednesday morning his bladder was once again at his belly button and he had been unable to pee in 26 hours. Another foley catheter was put in and this one will remain in until next Tuesday or Wednesday when we will try again. His doctor is hoping that the delay in him peeing is a result of him having had a latex catheter in the first time. Andrew has latex sensitivities. He hopes that with a non latex catheter in for this week that he will heal up and start peeing on his own. If not, then the neurological problem causing him to not pee during his "crisis" times is now carrying over into the "ok" times. We have slowly got used to caring for the catheter. It looks like he may have developed a urinary tract infection and we are awaiting those results today. The urologist that we saw on Monday just said that there is nothing that they can do to fix what is happening as it is neurological progression of his disease. They are in agreement that catheters are the way we are going to have to go when needed. We see the GI doctor on Tuesday to go over the vomiting and lack of weight gain. We really hope to get the catheter out next week as next Sunday (the 3rd) we are heading to a family camp at Capernwray on Thetis Island for 5 days.

Saturday, July 19, 2003 6:46 PM CDT

Where to even begin? We haven't updated since March right after Andrew had his first hospital admission in awhile. Well, it has been a long hard road since then. I can't go over everything as it is too long. To try and sumarize, Andrew has had 3 more hospital admissions since that time. All of them around 5 days each. The last one just ended on Thursday. Andrew's "crisis" spellls that put him in the hospital have accelerated in intensity and are longer and harder to manage. We are unable to manage the vomiting and hydration at home most times now and that is usually the thing that sends him back to hospital. We used to be able to go in and have him rehydrated and get out again quite quickly. This isn't an option anymore. Each of his stays has been around 5 days and during two of them we brought him out on a day pass sooner and it failed bitterly and we had to rush back. Some things have come to light during all these hospital stays which are helping to explain some of what is happening. No, it isn't a diagnosis, we have been asked to put the diagnosis search on hold a bit to concentrate on managing his symptoms right now. It has been pieced together that when Andrew is in a "crisis" his sympathetic nervous system is failing to work adequately. Your sympathetic nervous system controls your pupil dilation, breathing, heart, bowels, stomach and bladder. The muscles you have no control over. What happens with Andrew is that he begins vomiting for several days before we take him in to rehydrate him. This is likely due to the fact that the SNS is starting to fail him at this point. Then when we rehydrate him he is unable to release his bladder, his bowels stop for a period of 7-10 days and his pupils dilate really large. We also know that there are heart changes during this time. The vomiting can not be stopped other than stopping his feeds when we start the IV which is what we do. The problems have been getting worse and the other one that is causing significant problems is the bladder retention. For two of the four last crisis spells a medication has worked to release his bladder and thus, he was able to function. This past week, however, the medication did not work. It was necessary to try 3 times to do in and out catheterizations. However, his bladder never began working. They inserted a foley catheter (a catheter with a bag that can stay in for periods of time) This is still in and will be until next week when we make an attempt to take it out and see how he does. We have to see Urology on Monday with him and GI in a week. GI may be proposing a surgery that will make it physically unable to vomit and Urology is going to go over a couple of different options in terms of the bladder. In all, what we are seeing is that Andrew's disease is progressing. His doctor, in agreement with us, is taking a symptom management approach. Now, what we do rather than hunting for a cause, is do all that we can to make things easier for Andrew. I think that this was evidenced during this last hospital stay. The cause of Andrew's illness is still a mystery. We have been told that with the type of involvement that Andrew has that they would be unable to treat or stop what it is anyway even if they knew. So, that is our long update. I would say more about other things but we are still recovering from the hospital stay and Andrew still has the catheter at home and is on 20 hour a day pump feeds right now.
One bright spot, Make A Wish has granted Andrew a dream trip. In January, our family (yes all 6 of us!) are going on a dream vacation to Orlando, Florida to Disneyworld. We are all looking forward to this wonderful gift.

Sunday, March 9, 2003 8:22 PM CST

Andrew was discharged from Children's Hospital this afternoon after a 4 day stay. In our last update I mentioned that we were fighting to keep Andrew out of the hospital for rehydration because we were concerned about germs. Well on Saturday the 1st we finally realized that we were losing and that he was dehydrated. After coordinating with his doctor we went to Langley Mem. for the night and had IV rehydration. The next afternoon we went home with the IV in but locked with the plan of returning for a couple of day trips for more fluids. On Monday we went back to the hospital with plans of going home that same evening. We hooked Andrew back up to fluids and as the day progressed it became obvious that the fluids weren't picking him up like they should. He remained pretty lethargic and a very nasty cough had set in. Also after tons of IV fluids Andrew was unable to pee. We opted to stay the night and it was good because finally at 10pm, Andrew's bladder reached his belly button and it was obvious that for whatever reason he was just unable to release his bladder. The nurses catheterized him and drained 500 cc's of urine from his bladder. That is an amazing amount for such a little guy. Tuesday morning we thought he was improving so off we went home again with plans of going in for a day trip on Thursday again. Later that same Tuesday Andrew began coughing alot and he began running a hefty fever. His pulminology doctor a few weeks ago had said to bring him back when he was sick with chest symptoms so Wed. we opted to do that. The doctors thought upon looking at him, listening to his chest etc that they would admit him. However, they did a chest xray that showed gunk in his lungs but it didn't look terrible so they said we could go home but watch carefully for the next 24 - 48 hours for any changes. By Wed. evening his temp. appeared to have broken and we thought we had beaten whatever it was. One problem during this whole thing is that Andrew was unable to eat anything orally. We were tube feeding him 24 hours a day at a very slow rate. At 3am on Thursday morning I awoke to Andrew shaking violently in the bed beside me. I quickly ran and got Martin (who was sleeping in Andrew's bed). Andrew was burning up, shaking uncontrollably, mumbling and coughing and having a hard time catching his breath. It was obvious at that point that he needed help. I threw him in the car and went to our local emergency room (5 minutes away as compared to 30 for children's) They took him right in and quickly did another chest xray that appeared to have worsened. During the 1 1/2 we were there Andrew's breathing became more laboured and he was requiring oxygen. They called for an ambulance to transfer us to Children's hospital. We arrived there at about 5:40am and were seen to very quickly. The docs thought that he didn't have pneumonia but that the respiratory problems were upper airway. Over the course of about 2 hours while we were waiting for our room upstairs the nurses kept having to increase the strength of Andrew's oxygen because his levels dropped more and he was needing repetative doses of ventolin, a special inhaled medication that opens the airways. They then listened and Andrew had no air entry in the bottom half of his right lung so it had very rapidly progressed to a pneumonia. They started him on IV antibiotics for this. Also, he tested RSV positive. RSV is a very nasty cold bug. In your average child Andrew's age RSV would simply be a cold. In little babies and special little guys like Andrew RSV can be dangerous. So basically he picked up RSV and it very rapidly caused pneumonia. Our pulminologist said that with Andrew's lungs already being scarred that we need to expect that illnesses like this are going to hit him extra hard. The other thing is that Andrew developed a urinary tract infection. Most likely because he had been catheterized earlier in the week. The IV antibiotics did a world of good and we came home today. The bad cough etc from RSV can last up to a month so he won't be back to "normal" for a while. Anyhow I am very tired from the whole ordeal but wanted to quickly bring everyone up to date.

Friday, February 28, 2003 8:04 PM CST

Hi friends

Some good news and some bad news.

Let's start with the bad and end with the good. Andrew has been very ill this week. He is in one of his episodes of vomiting, lethargy, intestinal issues and dehydration, and seizures. We have held out at home up till now and hopefully can stay here. We were close to admiting him this morning but we are reluctant to put him in the hosptial because of the all the very nasty bugs that are in there right now. We run his feeding pump very slowly with water to try and keep him hydrated. It usually works but it is very hard work.

On Monday he pulminology and cardiology. Pulminology (lungs) says that Andrew is aspirating. That means when he refluxes/vomits some is going the wrong way into his lungs. Apparently his lungs look rather battered on xray. Due to this we will try and take a "nothing by mouth" approach when he is sick. This particular doc thinks that he is aspirating more during illness so he suggests only tube feeding when he is like that to try and protect the lungs. We will see how that all works. They also will do a sleep study during Andrew's next admission for other things. That will tell them how he is keeping up his oxygen levels etc at night.

We saw cardiology due to the alarms that were set off by his chest xray 2 weeks ago. It showed his heart to be even larger than normal. So they did an echo and said that his heart was now back to the previous size. However, they do believe that it was bigger and more stressed during his previous illness. The Cardiologist suggested that this may be something that is going to happen with Andrew now. I couldn't understand this very well so I discussed it with Andrew's pediatrician when we saw him yesterday. His explanation made sense. Andrew's muscles are all affected by the mystery disease. When Andrew gets ill his body's muscles are lower toned, he is more limp, he staggers more etc. The heart is nothing but a big muscle that is working all the time. Therefore, when he gets into this state it isn't overly suprising that the heart would do the same thing.

Now the GOOD news! In our last update we talked about the neurogenetics doc at UBC that felt very strongly Andrew has A-T. The testing she wanted to do is at UCLA and she needed to plead with BC Medical to pay for it. They said YES!! So in the next couple of weeks Andrew's blood will be drawn and flown immediately to UCLA where it will undergo very specialized testing. The results should be back in 3-6 months.

Alison

Thursday, January 30, 2003 at 05:50 PM (CST)

Alot has happened in the last two weeks. Let's see if I can remember everything and put it into words that everyone can understand.

First, Andrew saw Dr. S. at UBC last Thursday. We saw Dr. S in June and were returning to get the results of some genetic testing she had done. The tests she had run were normal. However, she feels very strongly that we need to pursue some tests in the direction of a certain disease. The disease she wants us to pursue is something called Ataxia Telangiectasia. Big word I know. This is an autosomal recessive disease (basically if two parents are carriers of the defective gene each child has a 25% chance of having the disease. Some of the things that are pointing quite strongly to this are the following:

Telangiectasia-these are spider veins basically. Andrew has had them on his cheeks for about a year and a half. They are getting progressively more noticable and are now on his lower cheeks, behind his ears and on his upper and lower back. They are at the point now where people who have known Andrew a long time ask us what the rash is on his face. They look like broken blood vessels under the skin.

Ataxia-this is the druken wobbly state that Andrew is frequently in.

Peripheral Neuropathy- Andrew has had three different tests now that confirm that Andrew's nerves do not function properly. The last one we just got results in on Monday, was the nerve biopsy. It is showing something called "axonopathy". Basically Andrew's nerves are being damaged. They are unable to tell why, just that it is happening. This makes his nerves unable to send and receive impulses to his muscles adequately. Over time, muscles that have not been receiving adequate signals start to suffer themselves. Thus, his muscle issues. This also causes Andrew to have no reflexes in his arms and legs. When they bang his knees and elbows with the rubber hammer, nothing happens. This can be a symptom of AT-the illness we are looking into.

IGA Deficiency-As everyone knows, Andrew has suffered pretty chronic illness for a very long time. We have just discovered that he is IGA deficient. Our bodies have various immunoglobulins that protect various areas. IGA is specifically in our bodies to protect from respiratory infection, intestinal infection, and ear, nose and throat infections, also the skin. These are the areas where Andrew has had ongoing infectious problems for a very long time. His pediatrician had decided to test these a couple of weeks ago because of ongoing joint pain that Andrew is having. In doing this we went into our copy of Andrew's health records from Children's hospital. Way back in April of 99, when Andrew was in Children's for the very first time, it was noted by immunology that Andrew was IGA deficient. We were never told, the information was never passed on to our pediatrician and only the consult notes are in the file not the hard copy of the test results. This is frustrating because, again, one of the warning flags for AT is immune deficieny, particularly IGA. Our pediatrician is being diligent in following up on this oversight and is pursuing the original blood test results. That aside, we know that at this point in time Andrew is deficient and his body can't protect itself from illness the way ours can. This will make a difference to how aggresively they treat infections in the future. Also, now we know that we have a darn good reason to try and keep him away from people with communicable bugs.

So, as you can see we have had a very eventful week. AT is a very scary disease. It is progressive. The kids general need to be in a wheelchair by the age of 10. One other very scary aspect to this disease is that, for some reason, kids with it have a 38% cancer rate. We are trying not to think about it too much. We have been down the "we think we know what he has" route a few times now. The testing for this will take 2 months to get government approval as it is being tested in LA. Then the test can take up to 6 months to run. They can not yet test for the disease. They test for something that occurs in people who have AT. If the test is positive the doc says that she can diagnose based on that. If it is not positive or they can't complete it, which apparently does happen, we aren't sure what they will do at that time. We do know that there is a clinic at Kennedy Krieger in Baltimore that specializes in AT so eventually, if the test is positive, we may ask to consult with them. Dr. S the ataxia specialist, did tell us that out of all the people she has sent for this test, she feels the strongest about Andrew having it done.

Again, this is only a theory and we hesitated in sharing all of this in fear of scaring everyone when the tests may come back negative. However, we want everyone to know what is going on. It is going to be a long 6 months!!

Alison

Monday, January 13, 2003 at 08:39 PM (CST)

Wow, it has been 3 months since we updated this site. When we started it was our intention to keep things right up to date on here. However, life has a way of dictating things otherwise. So many nights when the kids are finally in bed, I think I should do this but the last thing that I want to do in the hour before we turn in for the night is rehash Andrew's issues in my mind. I am going to run down and give you an overview of where things are at with Andrew. There are some new areas of concern and old ones too.

Breathing-Andrew has been on his breathing meds for about 6 weeks now. He is breathing very heavy and his breathing gets quite laboured even with short exercise. This doesn't slow him down but you can tell his breathing isn't right. He has just been referred to pulminology to go over this and another concern that I will explain further down.

Seizures-In September Andrew developed drop seizures. They are a sudden complete loss of muscle tone. So imagine your body completely losing it's ability to hold itself up for a brief moment. It usually results in a very sudden, very heavy fall. His forehead usually takes the brunt of the fall. One of his two seizure meds were upped to help combat these. It has helped because he was getting cluster of 6-10 on an every other day basis, where now we see one or two a week. If they do come in a cluster, as they do on more rare occasions now, we give him a dose of valium to combat them. In meeting with his neurologist in November she simply told us that in the realm of seizures this is not a good seizure to develop. They are very difficult to control and are not a good sign of where things are at neurologically.

Sleeping-For some reason, the past several weeks, Andrew's sleeping has really deteriorated. He is up several times in the night, snores constantly, despite having tonsils and adenoids taken out in August. Sleeps very lightly and makes many very bizarre sudden movements in sleep. In light of this change, his pediatrician feels that he may be having problems keeping his oxygen levels up at night. It is not uncommon for this to occur in kids like Andrew who have obvious low muscle tone. The throat works like a muscle and when the throat is relaxed at night it tends to get floppy sometimes. This and the lungs and breathing itself is involved. For this reason he wants him to see pulminology, same docs that look into breathing, to have a sleep study done. This will register where his oxygen levels are during his sleep. After this is complete we will know more on what course of action we need to take.

Feeding-Before Christmas it was decided that, because Andrew has gained no weight for about 5 months, we need to tube feed him more. We are always very reluctant when we are told to do this as we want to rely on the g tube less not more. However, recognizing that the calories and weight are very important for him we discussed options with his dietician. The outcome of that is that we have partially switched him to a higher density formula. This way we can still just tube feed between 7-11pm and get in the amount necessary. If we run the pump longer it wakes us up with a horrible beeping sound when it is done. These days sleep is at a premium so we turn it off before we turn in.

Rash-Andrew continues to develop very strange rashes that mystify even the best experts. He is on a long term antibiotic under the assumption that the rashes are related to an ongoing, low level infection in his body. This is a catch 22 decision because we had a negative experience because of this this past week. Andrew developed an ear infection. He has tubes in his ears so it is obvious, basically fluid and gunk pours out of his ear. This gunk was swabbed and it came back as Staph. Aureas bacteria. This is the bacteria he grows quite frequently. However, this time the bacteria had "mutated" so that it is no longer sensitive to the antibiotics that should be used. The bug has gotten smart enough that it has changed itself to get around the drugs. This causes concern because it now makes drugs that actually work against this bacteria a bit harder to find. This is the exact reason that you don't want to misuse antibiotics. This is how super bugs are made! We did find an antibiotic that should work that he just started tonight so we will pray that it works like it should.

Joint Pain-This is something completely new and it has occured several times in the past 10 days. Andrew's wrists and ankles suddenly give him a lot of pain. He had an episode at preschool this week where his ankle hurt so bad that he was unable to walk for several minutes. This is something very new. We have made his pediatrician aware and we will work towards figuring out what to do about it.

Hernia-Andrew has developed a hernia near his belly button. It comes and goes and isn't a big problem as long as it doesn't get trapped. It is likely caused by the excessive vomiting that he does at times and his low muscle tone and strength.

Development-Andrew had his psycho educational assessment done in November. This is what the school board will look at to decide whether or not Andrew will receive services (an aide) in kindergarten in September. This test is done by a psychologist. Andrew was 4 and 4 months at the time the test was done. His development ranges from 1 year 7 months to 3 years. His daily living skills and his language/speech skills actually fall into the "mentally retarded" range. However, he received between 2years and 3 year scores in non verbal cognitive skills which is in the "slow learner" range. Basically the only thing that saved him from being classified as "mentally retarded" (and I am using there terminology, not mine!) is this score. The scores clearly show how profound his developmental delays are and we are told that the gap between his age and development will continue to widen. This paints a bit of a picture as to what Andrew's development is going to be like over the next few years. On a good note, in talking with Andrew's principal, he feels that Andrew should have absolutely no problem getting the school board to give him an aide in school. (It is not a given, you actually have to jump through many hoops to get help)

Anyhow, this is so overwhelming to put it all down in print. This doesn't even touch on all of the issues that we deal with on a daily basis with Andrew. I don't want to end this long update on a negative note though. I want to tell you some wonderful, positive things too.

Andrew loves drums!!(Maybe that's a negative, good thing they make tylenol for Mum's!!) One of the highlights, of Andrew's week is church on Sunday. Then he gets to spend 40 minutes in awe of his hero! Our good friend Carey, who is the drummer at church. Andrew drums away on the back of the seats in front of us and is fascinated with Carey's every move! This however, has rubbed off into drumming on everything in site at home. In fact, at this moment, he is using the edge of the bathtub as a drum. If you come visit and see dents in all the furniture you will know why : )

Andrew is also doing hippotherapy. Hippotherapy is horseback riding therapy. He is just starting another session and he really does enjoy it. He goes to Pacific Riding for The Disabled in Langley. Itis a wonderful facility.

Andrew really got into the "fun" aspects of Christmas this year. He was right in there tearing open the wrapping paper and wanting more. Sounds like a funny thing to be thankful for but we treasure the little things that make Andrew a little closer to being a "normal" child.

God continues to bless us. Though our challenges are big and our life is full of things that no family should have to face, God is greater. Through this time and these challenges God continues to reveal himself to us in many ways, through many people. It is in our faith that we take comfort and find strength.

Thursday, October 24, 2002 at 05:21 PM (CDT)

It has been a long week. I went in to the preschool on Friday to video tape Andrew's head tilt. When he sits at rest he has a very pronounced tipping up of his chin, looking down his nose. I was able to capture it quite nicely at preschool during circle time. What I didn't expect to catch was the change in Andrew's ability to sit upright/unsupported. He has a very slumped over, rolled shoulders, legs straight out, arms supporting him on his legs position. I hadn't really noticed I guess until I saw him sitting in a room of his peers. I showed the tape to the PT yesterday, who wanted me to show to Andrew's ped. when I went to see him yesterday afternoon. The ped. thinks that it isn't that anything has gotten suddenly worse, rather that because of his hypotonia, and because he has grown over the summer, that his low tone is having a hard time supporting the increased weight of his body. I asked if that meant that the tone issues would become even more of an issue the bigger he got, he said it could. Andrew also does not have normal strength so that may contribute also. It sounds strange but I hope that that is correct because we have had the change in unsupported sitting, increase in the looseness of his hips and, most importantly, breathing issues (shortness of breath). All of these things have come to the forefront in the past month. We are approaching the breathing with asthma treatments for the next month, if that doesn't work, we will have to look at the possiblity of lung involvement in Andrew's condition. The very unfortunate thing is that there is nothing we can due to increase his tone. Also, because he is needing his arms to support himself now he is unable to join in and do the actions and that during music time because he is reluctant to use his hands as he is needing them for support.

Monday, September 23, 2002 at 08:47 PM (CDT)

Andrew saw cariology today......

First let me start with something a little different. As we were driving into Children's this morning I must admit I was quite nervous. I was worried that Andrew's cardiac status was worse. We were driving along the 99 towards the tunnel at about 7am. Andrew was quiet, Martin was quiet, the radio was on. On the radio came Michael W. Smith's amazing worship song "Above All". All of a sudden behind us, rising up from behind Mount Baker, was the most brilliant sunrise I have ever seen. The rearview mirrors were flooded with the brilliant reds and oranges of the sun coming up over the Cascade Mountains. What an amazing sight! At that moment in time I felt like God was trying to tell me "if I can make the sunrise, if I can make the majestic mountains, can I not take care of your little child?" I am not saying that God rose the sun at that particular moment just for us. What I am saying is that God used that moment to reassure a couple of worried parents on their way to one of a thousand medical appointments that He was there and that he cares for "our little sparrow".

The echo and ECG were closer to normal. His heart is doing good right now. Dr. H. felt that there is no evidence of cardiomyopathy at this time. He will see him again in 2 years unless new things creep up. That was great news!

Then we went to hearing. Not so great news there. It is showing (they think) that Andrew has a mild high pitch hearing loss. They want to do further more detailed testing to confirm. They say that it is not severe enough to be contributing to his speech delays though. ENT says that he is healing nicely from his tonsil surgery.

The kids are thoroughly enjoying cross country at school right now. Along with that and everything else on our schedule we are very busy as always.

The neurology department finally agreed to do an ambulatory EEG on Andrew. We are waiting for a date to get hooked up. We see his neurologist in the middle of November. All of the genetic testing that Dr. S. did at UBC is still out and is due in in January I believe.

I have to go get wet boys out the bath......

Wednesday, September 04, 2002 at 11:43 AM (CDT)

Andrew's holter monitor was essentially normal. When he had a drop episode there were no decelerations in heart rate. Which means it is most likely seizures causing the drop episodes. We are in the process of talking to Andrew's doctor to find out what to do. He is scheduled to see neurology and have an EEG but that isn't until November. He does have a few appointments later this month. He has cardiology with echo and ECG and ENT with hearting on the 23rd. We are picking up his new splints tomorrow. I think he is going to need them quite regularly again he seems to be tripping and falling alot again. He is also having a few episodes where he is screwing his eyes up really tight for no reason. These come in clusters also so we could very well be seeing different seizure activity breaking through. He developed another gtube site infection last week and had his antibiotic switched for 10 days. Hopefully this will get rid of it.

On a bright note, I dropped him off at preschool this morning and he went in as if he hadn't been away. What a relief-I didn't want him to not want to go. So now I have another 1 1/2 hours before I pick him up and am going to enjoy the quiet!

Wednesday, August 21, 2002 at 07:59 PM (CDT)

Today Andrew had to go to PAH to get hooked up to a holter monitor for 24 hours. This is a little computer that will record his heart rate for 24 hours. We are hoping to see if the falling episodes he is having are heart related. His doctor doesn't think so, he suspects they are more likely seizures and they will possibly resolve as Andrew continues to get back on his feet after being so ill. Tomorrow we will go back and have it taken off and it will be read in the next couple of weeks. He has had an episode while the monitor has been on so that is good. At least we will know for sure that it is or isn't his heart. One of the things that makes his doc suspect that it is brain and not heart is that he goes down without any warning at all, it is very sudden. If it were heart he would be woozy and wobbly before he fell. I am hoping that these things will just go away.

SOme good news, last month we reported that Andrew very suddenly and very concerningly began stuttering badly. It was severe enough that it made us go to Childrens and meet up with someone from the neurology team. It seems to have passed and it isn't an issue anymore. DOn't know what exactly happened but am sure thankful that it is gone. Andrew has done this before. He develops these symptoms that are very concerning and they due tend to subside. His speech therapist had heard his speech and was very alarmed but it seems to be better now. I spoke with Dr. Ward about this yesterday. He says that the therapists etc that work with Andrew are not used to dealing with children who are as medically complicated as Andrew is. Therefore, when these things happen we need to base them on our comfort level and not theres. Knowing Andrew the way we do.

Anyhow, Martin barbequed, dinner is ready.

Saturday, August 17, 2002 at 06:22 PM (CDT)

Well, the week was difficult again. Andrew's vomiting persisted through the week and has just eased up in the past 24 hours or so. One of his medications that comes in pill form we hadn't been able to give to him for a week. It is one that really helps with his reflux/vomiting. On Wednesday the pharmacy was able to get the prescription changed and specially made into a syrup. It is working well and it is helping Andrew's reflux now. The only real concerning things we have that are pressing right now are his weight loss and also something new. On Thursday Andrew started having episodes where he would drop to the ground, almost like he had passed out briefly. He would be conscious in the time it got for me to get there though. He would be very quiet for several minutes and then would go back to doing what he was doing. His doc wanted us to try and get a heart rate on him when these episodes were happening. I got a heart rate and reported it to him, I thought that I must have made a mistake because it didn't seem right. However, Andrew's doctor feels that what we calculated could be right and that for some reason his heart is having slow downs. We are to wait until Monday if things don't get worse and call him Monday if they aren't better. He hopes to do a holter monitor on his heart early next week if need be. This just never ends!!

Monday is Andrew's 4th birthday. He has lived through more in 4 years than most of us live in an adult lifetime. He is certainly my hero!! He perseveres through everything, with determination and drive to be just a normal kid. I hope he never loses that drive. I want to be just like Andrew when I grow up!

Tuesday, August 13, 2002 at 07:54 PM (CDT)

Last Wednesday, August 7th, Andrew had his tonsils, adenoids taken out, his ear tubes replaced and a nerve biopsy done. It has been a bit of a roller coaster rider ever since. He spent the night right after in the ICU as a precaution but he ended up needing to be there. A couple hours after surgery he couldn't maintain his oxygen levels, for those who understand, his O2 sats were dropping into the low 60s. He required supplemental oxyen via nasal prongs for the night, after they deep suctioned him to get the trouble causing secretions out of the way. His blood pressure also went really low so they gave him large amounts of IV fluids to bring it back up. He also awoke in an incredible amount of pain and required IV demerol to help. He did better as the night progressed and we did end up getting released the next day. After cardiology came to see him. Since then he has been having alot of pain, isn't hardly eating a thing and is vomiting and refluxing alot. We have been trying to get fluids into him and are obviously keeping some in because he saw his doc today and he isn't dehydrated. Which is great! However, he persists at screaming and awaking constantly at night and it has been very trying for us. We are hoping that he is close to turning the corner and will start to recoup soon but we will see. Andrew always does things in his own way. His weight has dropped 1.7 kg (almost 4lbs) since last week. I guess that isn't suprising though. Hopefully, when his tummy settles some we will at least be able to tube feed him more. He won't hardly eat anything orally right now. Anyhow, two screaming boys (Andrew and Aaron) need to get out of the bath so......

Monday, August 05, 2002 at 08:55 PM (CDT)

Well, we got back from our week on Vancouver Island yesterday. It was fun but camping with 4 kids is certainly work. We enjoyed the motor home thoroughly and I am convinced I will never use a tent again! Call me spoiled!

Now for the unfortunate part of the week, around wednesday Andrew's asthma kicked in in a bad way. He hasn't had asthma problems in about 18 months. Why it has to happen this week I just don't know. He is on nebulizers 4 times a day. We ended up having to call his pediatrician to have prescriptions called over to the island because by Friday he was getting sicker. The being unwell caused an increase in seizure activity and a bunch of other complications. He also had another g tube site infection. It was really bad so we also had a prescription for Keflex, an antibiotic, called in also.

Where all of this becomes a real concern is that Andrew is supposed to have his tonsils and adenoids removed, ear tubes replaced and a nerve biopsy on Wednesday. Tomorrow morning we go to have a dermatology appointment and an appointment with the preadmission team. They will figure out pain control for after surgery because he is allergic to some common pain meds. They will also decide whether or not he can have surgery with his chest the way it is. Please pray that surgery can go ahead. We really want to get this done. He will be hospitalized for a few days and may spend a night in the ICU if need be after. We also have to retest his blood clotting tomorrow to ensure that all is ok there to go ahead.

We will keep the board posted.

Alison

Friday, July 19, 2002 at 05:08 PM (CDT)

Good news for a change!! The second set of blood clotting tests came back without the same abnormalities as the first set. That means that Andrew does not have the rare blood clotting disease they thought he did. This is really good news in terms of safely performing the surgery that needs to be done in August.

It also looks like things will come together for the nerve biopsy to be done when he is in for his surgery also. They are also going to do a 24 hour urine collection for copper which is to test for Wilson's disease.

It is a beautiful day and we are off outside for a while. Just wanted to update quickly.

Monday, July 15, 2002 at 02:47 PM (CDT)

Well summer is clipping along. The kids and I (Alison) spent the last week at VBS at our church. The kids had alot of fun and Mommy was very busy helping in the craft room each morning. We are going on vacation for a week in 2 weeks time. I think we are all looking forward to this. Right after we return from camping Andrew is having his tonsils, adenoids removed and ear tubes replaced and a nerve biopsy done. His tonsils are really large and the ENT doc things it is definately time for them to go. To complicate things, Andrew's low muscle tone affects his neck and throat so it could cause some concern. They will be watching him very carefully during our hospital stay. We may have to spend a night in intensive care. Also, we saw hematology a couple of weeks ago (blood docs). Andrew had some delayed clotting times and we had some concern over bruising and his slow healing in general. Well it would appear that Andrew may have a very rare blood clotting disorder. The doctor wanted to run tests to confirm her disagnosis and we are currently awaiting that confirmation. It is essential that this is all settled before his surgery because it is treated in a very special way in the operating room. We are trying to wait patiently but it is hard sometimes.

Last week Andrew began having difficulty with his speech quite suddenly. He is stuttering badly whenever he tries to say two things together. We met neurology who are taking a wait and see approach. We also spoke with Andrew's primary doctor on Friday. His speech therapist is coming Wed. We are hoping that it is normal development but we fear regression. It is another one of those things where all we can do is wait.

The Child Development centre is bring a wedge for Andrew's bed around tomorrow. Andrew is receiving a lot of his nutrition through his gtube while he sleeps. He refluxes a lot so they are bringing this "cheese" shaped wedge to keep him in a safer sleeping position. On a good note. The Losec that Dr. Ward prescribed for the vomiting/reflux seems to be helping with the 'spitting up" that Andrew still does. That is a good note.

I will update the site as soon as the Hematology results are in. If it is indeed this rare disorder for blood clotting we will let all the specialists who are searching for Andrew's global diagnosis know in case it is a clue in some way.

Alison

Tuesday, June 04, 2002 at 09:57 PM (CDT)

Andrew had to see ENT yesterday. He had his second set of tubes placed last April 01. They are out again, which I knew. I thought he would acknowledge the tubes were out and do a hearing test and life would go on. Wrong! The tubes must be replaced, his ears are already full of fluid and his Tympanograms (or something like that) show his eardrum is not vibrating again. He then examined him further and thinks that his adenoids and tonsils should come out also. HIs tonsils are extremely big and he feels that it is time to do all three. We are going to watch him during the next 2 weeks to see how he does in his sleep, if he is getting apnea spells, which he suspects he is then we will go ahead with surgery. He says because of Andrew's overall condition that he would stay in for at least one night. He said that he is going to book him to the ward but not to be suprised if he places him in ICU for one night to be cautious because of bleeding, swallowing difficulties before surgery etc. Andrew has never been in ICU before. This is a BIG first for us and I am nervous. I spoke with his pediatrician about it today. He thinks that it is the correct step to take with him. We will follow up in two weeks but surgery is likely to be in July. The other thing that we have to look into is his blood clotting. The risk of bleeding with a tonsillectomy is higher than some other surgeries and Andrew blood clotting test done last week puts him outside of the normal range again. We may have to follow up with hematology before surgery. The other new is that Andrew's appointment at UBC with a neuro geneticist has been moved up from July 18th to this Thursday. This could be an interesting appointment. This doctor is studying a family of diseases that Andrew's doctors in Toronto felt should be explored further with him. Dr. Ward is going to Toronto next week and will seek out Andrews doctors there to see if they have any new insight. Hopefully he can take with him the information from this visit on Thursday and come up with some ideas.

Monday, June 03, 2002 at 12:17 AM (CDT)

The past 3 weeks with Andrew have been very difficult. The chicken pox has really caused his system to go a little off balance. He has been sick basically the whole time. His doc believes that he has post infectious encephalitis (from the chicken pox) It is probably causing the night time vomiting in his sleep, the behavioural changes and the increased ataxia. On top of all that he seemed to contract a virus last week that caused him to have extremely high fevers. (104.9), which in turn leads to increased seizure activity. He had a bad chest cold with it and also diarrhea that was severe. That seemed to clear up at the end of the week but yesterday a mystery rash appeared and he is still getting fevers today. We can't quite figure this one out.

His doctor is going to Toronto next week for a conference and is going to take some time to go to Sick Kids and track down the specialists that Andrew saw there. He is taking photos, reports etc of the more recent changes in Andrew's condition for them to see. The person to person contact is a great way to force Andrew to the forefront of their thinking once again.

The dermatologist has put Andrew on a 3 month daily round of Keflex (an antibiotic) to try and eraticate the Staph Aureas bacteria that wants to continuously infect his gtube site. We have just started this on Saturday. Hopefully the antibiotics will not cause the intestinal infections that they have done in the past.

Tomorrow he has an ENT and Audiology appointment. His ear tubes are almost out so we will see if they want to replace them or not. Then we will have his hearing tested also.

God bless and please continue to keep Andrew and all of us in your prayers. The past 3 weeks have been very trying and I think we are in need of some added strength.

Saturday, May 25, 2002 at 12:38 PM (CDT)

Thursday we took Andrew to the pediatrician because of the night vomiting and irritability. We had a good, thorough appointment. After we went down to the lab to do blood work. It was a nightmare. The lab techs tried twice and he has this unique way of wiggling his veins under the skin and he pulls the vein off the needle. They tried to tell me I could sedate him and have the hospital do it or drive to Children's and try there. I went back upstairs to the peds. office and explained. He came down with us himself and did the blood work!!He tried the elbow once with no luck and then drew it from his hand no problem. What would we do with out Dr. W.! Yesterday afternoon he developed a fever with the cold he is struggling with. He still vomited last night even with the Losec, which is a new vomiting drug we are trying. The doctor will call when the blood results and urine test is back. Tonight we have a big fundraising gala at school to attend and it is Melissa's birthday party this afternoon.

Alison

Thursday, May 16, 2002 at 05:14 PM (CDT)

Our lives have been chaotic the past month. First, chicken pox entered our home and all 4 kids came down with it. Melissa had it and then 2 weeks later all three boys came down with it. In a normal family this would be stressful but when you throw in a child who is medically fragile to begin with things are very concerning. Andrew had a very difficult time handling the pox. He was far sicker than the other kids and due to his continuous high fever, hydration and more seizure activity was very worrisome. We did make it through though. During the worst of the week, I slammed by finger in the van door, breaking my knuckle and setting me aside for a morning getting xrays, splint etc. When it rains, it pours.

In terms of development, it is nice to see Andrew putting together two very simple words now. He has the speech of a less than 2 year old and he is almost 4 so we are pleased when we see the smallest signs of improvement.

His g tube continues to have some difficulties with infection. In fact, during the chicken pox, spots around the gtube site became infected and he needed to be on antibiotics as well as an antiviral to slow down the chicken pox virus. In saying that though, his gtube was a very wise decision on the part of the doctors and ourselves. It has kept Andrew out of the hospital on numerous occasions now and for that we are so thankful.

Since he was really sick a couple of weeks ago we have been having problems with night time vomiting. It is really interfering with our ability to tube feed him at night. We are awaiting a call from his doctor to see what steps we can take to help aleviate this.

Again we really thank you for your continued thoughts and especially your prayers. The past few months, along with the daily stresses of having a special needs/sick child have also included Martin's Mom having several small strokes, my Dad having major neck surgery and the first Anniversary of the passing away of Martin's Dad. Your prayers carry us through when we find it hard to pray for ourselves. Thank you.

Saturday, April 20, 2002 at 09:25 PM (CDT)

The blood work that was redone in March for clotting was normal. It was just in the normal range so we will do it again the next time he needs blood work done for something else. Andrew has been having a horrible time with a mystery skin rash, it was biopsied and is still a mystery. After several dermatology visits the derm. feels that it may be a reaction in Andrew's body to either low grade stoms (gtube site) infections or a reaction to the tube itself. Both are rare - but hey, everything about Andrew is rare. We are treating it with a very potent steroid cream. He also has had another gtube site infection that was treated with Antibiotics. It is hopefully gone now but we are having a hard time staying on top of it.

One piece of bad news is we have chicken pox in our house. Melissa came down with chicken pox Monday so it is probably just a matter of time until the other three incl. Andrew get it as well. I must admit I am very nervous about Andrew getting it. We need to pray that he is protected from the things that chicken pox can do to kids with compromised immune systems. Well we will know soon enough.

Andrew is continuing to do well in preschool and he loves his assistant at school.

Andrew's primary physician is going to Toronto in June and is going to try and meet with the doctors we saw there at the HSC. He is going to take updates on Andrew and photos of the strange rashes etc. That is great news. It is better to get these guys face to face to respond.

I will try and update much more regularly. Please don't forget to sign our guestbook.

Saturday February 23, 2002 5:16 PM CST

This week we had some blood results for
Andrew come back. They are showing that he has delayed clotting time of his blood. We don't know why. There are numerous things that can contribute to this. The first thing we are trying is 3 days of vitamin k therapy and then we are retesting his blood a week later (we are on day 2 now). Vitamin K deficiency can occur in people who have chronic illness. Once those results are back, if they are improved then we found the solution, if they are not, then Andrew needs to go and see the hematology department to see if this is a more serious problem. Needless to say, we are hoping the vitamin K works. On Friday we are going to see pediatric dietician to see if Andrew's calories/weight gain can be improved. We are supplementing with his feeding pump at night but are really in the dark as to how much he needs a day. (If you missed the update earlier this week, click on the history button on the left and it will take you there)

Tuesday February 19, 2002 6:48 PM CST

It has been 3 months almost since we last updated Andrew's page. If anyone has been coming in for updates and they haven't been here I apologize. Life is just so incredibly busy and the weeks fly by.

Andrew is continuing to do well in preschool. He loves his aide and is starting to have a couple of little friends that he really enjoys being with when he is there. His speech assesment was completed a couple of weeks ago and they have his receptive and expressive speech at a 21 month old level. He is now 41 months. So he has a major speech delay, which we did know anyway. He is seeing physio once a month as they monitor any changes that may occur with his muscles. His neck muscles have weakened and he sits in strange positions sometimes to avoid having to use his neck muscles to hold his head up. We are going through the process of getting him a medical stroller. He still needs one but because of his size and age a regular store stroller doesn't cut it. He had his g tube changed to a mickey button on February 1st. This is a great improvement. We had been battling granulation tissue on a daily basis before but so far this new tube is helping. He lets us put the tube portion in and out of the button with no fuss. This is a very positive step. We are using his tube to feed him overnight every night now though. He is not taking in nearly enough to grow or maintain his weight so we supplement with pediasure at night. It is pumped in through the tube during the night while he is asleep. We are meeting with a dietician on March 1st to figure out a plan as to how many calories he needs in a day.
At the same time his gtube was changed (he was under anesthesia) skin biopsies were taken to be sent to Toronto for fibroblast cultures. This could prove useful down the road in working towards a global diagnosis. Andrew has been battling a terrible rash. So bad that the dermatology department biopsied it to figure out what it was. They still don't know. He is reacting badly to something but we have no idea what. He is using two topical creams and may have to have a third dose of antibiotics. He also had some blood results come back that are a bit mysterious. He has slow coagulation. His blood is clotting slower than it should. His pediatrician is looking into this and we hope to come up with an explanation as to why this is happening. There are a few possiblities. Liver dysfunction is one them. We are trying to patiently await what he finds out. So, as always, things with Andrew are never quiet. He is a total and complete joy though and we adore him more and more every day.

Sunday, November 25, 2001 at 01:59 PM (CST)

Thanks for all the prayers and good wishes. They truly worked because I wasn't nearly as nervous at the appointments Wednesday as I thought I would be.
First, EEG was a disaster in that he screamed and fought for about 40 min while getting hooked up and then wouldn't fall asleep for the test. So they aren't really able to compare it to his others.

Second, ECG they couldn't do because he fought too hard.

Third, Echo. He wriggled around for but they got the basics of what they needed.

Cardiologist said that the left side of the heart is still enlarged for his weight and height. He doesn't think it is affecting his heart function from what he could tell by the very basic echo. they were able to get. They are going to do an Echo. while he is asleep on Feb. 1st to get a better idea. So this was good. The best news would have been that it wasn't a concern at all any more but at least it isn't worse. He said that they will watch closely for any changes.

Neurologist, said that EEG from the AM wasn't comparable to the others due to the fact that he didn't sleep and that it was a short EEG compared to the ambulatory ones where we have significant abnormalities usually. She said this one show moderately organized background activity and slowing in the frontal areas. Again, she said you can't compare it to the others though. Unfortunately, for some dumb reason like funding, our hospital is not currently offering ambulatory EEG's so we have no way of getting a real comparison. She didn't have a whole lot more to say other than us explaining to her the progression of Andrew's problems to date. She is ordering another MRI and will organize skin biopsies to be redone and we will possibly do a nerve biopsy.

Overall, it was an ok day. A little good news would have been nice but at least nothing devastating occured. Thanks again for all your prayers and concern. You are all the best!

Alison

Tuesday, November 20, 2001 at 03:32 PM (CST)

Happy Birthday to the best Daddy in the whole world!!!

Today is Martin's Birthday and the kids all agree with the above statement. There Daddy is the best!!!

Tomorrow is our big day at Children's. Today is busy which I think is a good thing because the nerves would get the better of me if I wasn't busy today. Martin and I are going to have dinner out this evening and then going to have cake after with the kids. Andrew has to stay up till midnight tonight in order for him to be ready for his sleep deprived EEG tomorrow morning. I will be glad when tomorrow is here and the anticipation of results is over. Still no news from Toronto. I don't know how many times I should call and bug them but it doesn't seem to get us results any quicker. I was really hoping that we would have them in time for the meetings tomorrow.

Last week we had a physio appointment for Andrew. We took along some video we made of the way that Andrew sits when his back is unsupported and he is watching TV. He sit with his head tipped way back like he is looking at the sky and then looks down his nose at the TV. We weren't sure if it was neck muscles that were weak or his eyesight. It would appear to the physio that it is weak neck muscles. There isn't really much we can do for it except try to encourage him to sit on the couch and lean his head back on the headrest.

A little piece of good news is that I dropped Andrew at preschool this morning and after a little bit of hesitancy going in he didn't cry or fuss when I left. That is really nice!!

Wednesday, November 14, 2001 at 06:41 PM (CST)

It has been far too long since I updated Andrew's page. I apologize. Life has a way of sweeping by before you know it. I will do my best to do quick summaries of where things are at.

First, Canuck Place was a very good experience. Andrew had a good weekend there and so did we. The facility is beautiful. The kids are automatically drawn to friends and we all had a really nice time. We are going back the first week of December for some more R & R. We had the priviledge of seeing the Stanley Cup (yes, the real one) during our stay there and then returned the following day to carve pumpkins with the Canucks. Matthew, Melissa and Aaron loved that. (Check out the pics on the picture page)

Andrew is liking preschool. He doesn't like the being left part but seems to be enjoying preschool as a whole. His worker is really wonderful which helps immensely. He participated in his first preschool party last month and did pretty good.

Due to weight loss recently we are consulting a dietitian to find out how much to tube feed Andrew on top of his "food". He isn't eating very well and having the tube to fall back on is a good thing right now.

We are awaiting a new set of splints for Andrew and due to the decrease in his strength and the weakening of his leg and neck muscles he has been given immediate placement with a physiotherapist. This, we are hoping, will be helpful. We just had our first appointment with this person today.

The skin biopsies that were done in Toronto were contaminated with a yeast infection which means that they are useless. This is a huge setback and very disheartening. We have had several setbacks where skin biopsies are concerned. They do need to be redone and we are awaiting scheduling etc. of these.

Next week, November 21st, is a HUGE day for us. Andrew has EEG, ECG, Echocardiogram and Cardiologist and Neurologist appointments. On this day we will know the current status of his heart and also how his EEG's are looking. I will update shortly after that appointment day but please keep us in your prayers this is a big day in many ways for us.

Please keep us in your prayers as we continue to plod on.

Thursday, October 11, 2001 at 11:17 PM (CDT)

We have a few new concerns that I guess I should share with you. First, Andrew is having some new difficulties with his legs. He has begun dragging his feet again even with his splints on. They did wonders for about 3-4 months, but now, it seems like this new problem is coming from higher up his leg. We have a rush appointment with physio. next Thursday. I spoke with his primary physician about this Tuesday. He said that it could be the low muscle tone beginning to affect the other muscles in his legs. I expressed frustration at the fact that he was doing well with the splints and now this. I was reminded that it looks like Andrew's disease is progressive and, therefore, these changes will occur. I can hear it a thousand times, I will never "accept" it though. However, we will stay optimistic and pray that it is something much more simple and benign that maybe the physiotherapist can give us some assistance with. We also need to give Andrew a flu shot this year. He had one last year but we believe he had a reaction because of it and developed a secondary seizure type. We weren't going to do it this year for that reason. However, due to his muscle issues it was strongly suggested that we reconsider because low muscle tone issue will put him at a much higher risk of pneumonias etc. We have booked the appointment for the beginning of November and will pray and consider things in the meantime.
On a positive note, Andrew is really seeming to enjoy preschool. Laurie, his special assistant, is wonderful. Also, drum roll please, he learned a new word, HEAVY. Hey, we take huge joy in what would be the simplest victories!!
Have a good night.

Thursday, October 04, 2001 at 09:34 PM (CDT)

Just wanted to pop in here quickly to let you all know that you can read about Andrew's story in the October issue of Today's Parent magazine. You can find it in most Canadian stores that sell magazines. There is a story in there called "What is wrong with my child?" Andrew is one of three children highlighted. The interview was done a year ago with an update in June. It is strange to see the story in print. If you have missed the past journal entries and would like to look back just click on the history button and it will take you back to the past entries. Again thanks for your interest and your prayers. I will update again in a couple of days.

Wednesday, October 03, 2001 at 06:46 PM (CDT)

WE ARE HOME! We arrived home yesterday after a long and bumpy flight. I am so glad to be here again. Andrew's fever resolved by Sunday morning. We don't yet have an explanation for why it was there. I restarted the drug last night that they started while we were they to see if that was the cause. His rash that looked like flaming red scratch marks has turned his skin brown in those areas now. It is another mystery! The trip was worthwhile in that we have a bunch more people with new ideas looking at Andrew. We did not come home with a diagnosis. I knew before we went that the chances of that happening were very slim but I guess somewhere, subconciously, I hoped. What we do know is this...Andrew definately has peripheral neuropathy mostly sensory, so he doesn't feel things like you or I would. It generally doesn't go away, they hardly ever see it get better, it can get worse. If it had been caused by malnutrition for instance then it would improve but none of those characteristics fit Andrew so they believe it to be a real "clue" as to what is happening. Metabolics can not see any evidence of a definate metabolic problem. However, they feel a couple of things need to be followed up on. Andrew's enzyme (Ican't remember the name) that would indicate metachromatic leukodystrophy has twice been quite low. It is not low enough for it to be that disease (Thank God). However, they also would like an explanation as to why this enzyme is low. There is another disease family that can pull this enzyme down so they are doing the blood work to look for that. The other theorys are a family of genetically inherited diseases called the ataxias. I don't know much about them but they could cause some of the symptoms that Andrew has. The other thought is a specific mitochondrial disease called MNGIE (each letter stand for a symptom).We are going to a very specific blood test that needs to be sent to New York to test for this. Also, his skin biopsies were redone and they are doing fibro blast cultures also. They also said that if all else fails they can look at the brain more closely to more closely define where in the brain the seizures are originating from. From there they could look at surgery (this is far down the road,Like were not already far down the road ) If the area of the brain that was causing the seizures was also the area responsible for some of his other difficulties then surgery MAY help. Anyhow, we started to think again of areas that had not been addressed before which is really good. I am so tired, it was a very long 10 days. I am going to meet with his ped. tomorrow to go over the "To do" list.
We will get the blood tests organized. Some need to be couriered to New York etc. He goes back to preschool tomorrow! Anyhow, I want to thank you all for your prayers, good wishes and all the practical help that some of you gave Martin while we were gone. God is so good and He shows his love through the deeds of His people. We are truly, truly appreciative of it all.

Saturday, September 29, 2001 at 03:55 PM (CDT)

Real quick update from our last entry. Andrew is still running his fever but it isn't getting worse so we are waiting on doing anything. I will see what it is like in the morning unless things get worse during the night. His spirits seem to have improved a bit and he is a little more lively this afternoon. So keep on praying. Mom and I took shifts in going out for a couple of hours today because we didn't want to take Andrew out. If he is better tomorrow we will go to a big market that is a subway ride from here. For those who are hockey fans, Chris King, some hockey player, visited the house on Wednesday but we missed him as we were in appointments. I think he played for the Maple Leafs (Matthew probably knows). Anyhow, we didn't get to see him because we were busy. Tomorrow volunteers are cooking an early Thanksgiving dinner for everyone in the house so we don't have to eat microwaved food tomorrow. YEAH

Saturday, September 29, 2001 at 08:36 AM (CDT)

It is a sunny Saturday morning here in Toronto. I am counting down days to when we can go home to be with our family again.

Yesterday Andrew had an evoked potentials test done and two skin biopsies. The evoked potentials measures how fast the brain is picking up messages from the nerves. We will have an answer to that one on Monday. He was well sedated for that so it was benign for him. He then went up to the same day stay unit where a dermatologist came in and did skin biopsies. They are looking for metabolic changes in the skin. She took two biopsies from his forearm and then put stitches in after to close it up. He only woke briefly during the freezing other than that he slept through the whole thing. We had to stay in the unit for a while until he woke up. If I had told you about our previous skin biopsy nightmare in Vancouver then you will know how this experience was a thousand times better. One little kink is that Andrew started running a fever last night and it is still going strong this morning. I am debating whether I need to get it checked as he had biopsies yesterday and he gets silent bladder infections sometimes. Anyhow, enjoy your Saturday.

Thursday, September 27, 2001 at 05:58 PM (CDT)

It is going to be difficult to update completely as I have to go and get Andrew ready for bed. Yesterday we spent over 4 hours in clinic with two different sets of doctors. They both have theories as to what could be wrong but of course, there are no definate answers. We are doing some testing over the next few days to see if we can come closer to a diagnosis or at least piont us in the right direction. Tomorrow we are having some more testing done. It is a bit more involved and will take a couple of hours and he will be under heavy sedation for it. He is also having his skin biopsy repeated tomorrow also. So tomorrow we spend most of our day at the Same Day care unit getting all of this done. It is good to know that fresh minds are thinking of Andrew. I know that we may not get answers but I also know that we are now doing all we can to find them if they happen to be there. Oh ya, today he had an EMG test done. It tests whether the muscles and nerves are receiving and sending messages correctly to the brain. It appears to be normal which is actually an improvement over the last one. So that was one piece of good news. Pray for safety during the sedation tomorrow and that the Doctors may have some more clear ideas on where to go from here.

Tuesday, September 25, 2001 at 05:32 PM (CDT)

Today we had no medical appointments. We had a quiet morning and got some much needed laundry done. The night last night was much better for Andrew than the night before which was good. We went to Eaton's Centre today. It is a huge shopping mall about 5 blocks from here. It is a very diverse neighbourhood. You have the very rich and the very poor all in one place. We walked over to the hospital also to get some more pediasure and to check with the neurology clinic regarding the Evoked Response test that they are wanting to do. It is looking like it may be done on Friday but we aren't sure yet. He definately has never had this done before. It measures if the brain is sending and the body part is receiving messages. They can test brain stem, arms, legs, hearing, sight etc. It sounds like it could be very helpful. Tomorrow we meet with the metabolic doctor and the epilepsy doctor. They are actually both seeing Andrew at the same time which could be good because then we don't have to repeat the story twice again. It seems like we have been here a very long time already and yet it's only Tuesday. Anyhow, I miss my family at home terribly and it is difficult to see other whole families staying here together knowing mine is so far away. I know that this is a good thing that we are doing though. Well, a nice volunteer is watching Andrew in the playroom while I type this up so I had better go. I am sure I will have much more to write tomorrow.

Monday, September 24, 2001 at 05:25 PM (CDT)

Well here we are in Toronto. We arrived after a pretty good flight. Andrew did great in fact. The only time he got remotely scared was during the reverse thrusts on landing. We saw some just beautiful scenery along the way. What an amazing land we live in. Anyhow, we spent the weekend at a hostel type hotel that is run by the hospital. The rooms were very tiny and they didn't have any dishes or anything to use. Today, luckily, we have moved to the Ronald McDonald house. It is lovely and so much better for Andrew too. We had our first appointment today with a neurodevelopmental doctor. He was nice and we were there for almost 3 hours. His first thought is mitochondrial, which is what we have thought, but that was just his first impression. He confirmed that Andrew has virtually no reflexes in his lower limbs and appears to have nerve/sensory problems also. They have scheduled an EMG test for Thursday afternoon and a follow up appointment with him next Monday. There is another test, one that we have never had done before, that they are trying to schedule also. Tomorrow at this point, is a free day, so we will probably hop the subway and sightsee a little bit. Although, it is raining here today. I will try and update again tomorrow.
Alison

Sunday, September 16, 2001 at 06:19 PM (CDT)

I feel overwhelmed this week with grief and confusion and fear. I am sure all those reading this have felt the same way due to the events that happened in New York and Washington this week. I hope that all of you are safe and well and we pray for the future, whatever that future may entail, for your safety, peace and for God to pour out his Spirit across the continent and flood His people with His blessing of comfort.

Andrew has begun preschool!! He has attended for 3 mornings so far and is making the adjustment quite well. His assistant is a wonderful, gentle woman that I know he is going to grow to adore. I am very glad that we made the decision to send him to preschool, I think that he will benefit from it.

Our Toronto trip is just 6 days away. I must say that with everything that has happened across the continent this week I am very nervous about flying and also about leaving the rest of my family. Please pray for me to have a peace about this trip, for safety and for my family that is staying here at home. In times of crisis you never want your loved ones more than arms reach away but I know that this trip is so, so important also.

We had to alter some of our travel arrangements due to the tightened security for the airlines now. A person we know from church who is a pilot had so graciously offered my Mom, who is flying with us, 2 of his "family" passes. She was going to fly stand by but the cost to us was going to be minimal. Unfortunately, due to tightening security, we found out on Thursday that we are unable to use these passes as they are stopping all use of them until they figure out how to better monitor the airports. So Thursday we had to quickly make arrangements and have booked a full fare flight for my Mom on the same flights that Andrew and I are due to fly on. It was an expense we weren't expecting. However, we had also been blessed with a sum of money from some German family members who felt moved to help provide funds for this trip. The monies were given a week before we found out that we would need to purchase a ticket. Therefore, we didn't need to hesitate in making a booking. God surely had his hand on this and provided for us, through these generous family members, at just the right time.

Andrew had a two day feeding study done this past week which had some pretty good news. Andrew needs to be closely watched during mealtimes because he tends to have no concept of what is in his mouth or how much. The concensus was that he has reduced sensory awareness, probably in his mouth, as well as other areas. There doesn't appear to be a physical problem with his swallowing that is causing his problems at this point. This is good news. The thought of his low muscle tone altering his ability to eat properly is a very scary thought.

His speech therapist was in this week also and is concerned about his lack of trying to communicate in some circumstances. When he is upset now he tends to just repeat the same meaningless sound over and over again but it doesn't help at all with identifying what is wrong. She feels that this could be an area where some regression is showing. We knew from an assessment recently that his speech had regressed but having a second person confirm it is rather disheartening.

We have been having troubles with alot of granulation tissue around his g tube site. Granulation tissue is raw, fleshy skin that grows around the are where his feeding tube comes out of this tummy. When it gets bigger we use silver nitrate sticks (cauterizing sticks) to "burn" this skin away. Unfortunatley, having this done is amazingly difficult on Andrew and no matter what we do to try and help make it more comfortable for him we can't seem to help. This is something that we must keep under control though or the tissue itself gets sore after a while. We are trying to find new ways that are less traumatic to keep this better managed.

This morning, at church, our pastor and elders anointed Andrew with oil and prayed over him. Placing our faith in God is the one thing that we can do in a situation where we feel totally and completely helpless. Without our Faith we surely would not be able to handle the uncertainty of what is ahead for Andrew.

I will try and update again late in the week before we leave on Saturday. I am sure that Martin will try and update this while we are gone. Please continue to pray for us this week and in the next couple of weeks. Thank you for your continuing support, thoughts and prayers. We really need and appreciate this right now.

Thursday, August 30, 2001 at 09:52 PM (CDT)

Well our baby boy turned 3 years old on August 19th. We had a party with some friends on the next day. We did a picnic in the park and it was alot of fun. The next two days it poured with rain so our timing was perfect.

This week has been a busy and emotional one. Monday, the six of us went on a tour of Canuck Place. It is a beautiful facility. You couldn't ask for a nicer and better equiped place for respite. Even though we are using it for respite it is hard to think of him being there. We are entitled to 30 nights a year. I can't see that we would use that much but that is what we are given. We can go and actually stay there as a family which is a nice option also. He would have nursing care if need be and the cooking, cleaning etc. would all be done. We go for 4 days at the end of October for our first family visit. The other kids are looking forward to it.

Andrew, unfortunately, had a nasty seizure on Tuesday. It lasted close to 14 mintutes which is really long for him. He reamined very wobbly and shaky for a couple of days but I think he is getting his balance back a bit now. It would seem that his wobbliness is getting a little worse again. We were really hoping that the splints would help, and they do, but when he doesn't wear them he has a very hard time with his ataxia.
This week we have also been getting ready for Andrew to start preschool next week. He will have an aide in the classroom so we are going through the process of making sure they are equiped and trained for Andrew. The teachers need training in seizures etc. before the homecare nurse will feel comfortable with Andrew being left there.

Our Toronto trip is very quickly approaching. It is just over 3 weeks away. After waiting a year for this to happen, now that it is almost here, we are nervous and anxious to get it done. The next 3 weeks are so busy with Andrew's school, Aaron starting kindergarten, the others starting school again, planning the trip etc. Andrew also has a 2 day feeding study before we go and about 4 therapy appointments scheduled. Welcome to the Fall!!!

Thursday, August 16, 2001 at 10:34 PM (CDT)

Well, we have some good news and some bad news.
The good news is that Andrew's and my flights are booked and confirmed. We are also working on getting my Moms flight booked. We are so grateful to Variety Club of BC for assisting us with the cost of the flights and also our accomadations in Toronto. I am excited and anxious to get this trip on the go. It gives us a renewed hope that we may find an answer and yet it is hard to believe that we have had to get to this point.

The more discouraging news is that Andrew had a developmental assessment done yesterday and they see very little signs of progressing development and, in fact, there are signs that he has regressed in terms of his gross motor development and his speech.

We are also going through the process of getting Andrew signed up at Canuck Place for respite care. We don't know that we will use it a whole lot now but his pediatrician thinks that it would be a good idea to get him started there. If Andrew's disease continues to progress he feels we will be definately needing it in the future.

Anyhow, pray that we are able to get my Mom on the same flights as us and that the accomadations fall into place. Above all, that we get some answers. Thanks for all the good wishes in the guestbook. We are enjoying everyones thoughts and good wishes.
Alison and Martin

Monday, August 13, 2001 at 07:59 PM (CDT)

I thought I would go back in time and let everyone know what has been happening with Andrew.

Andrew was born a week and a half early and was every healthy and rambunctious when he was born. We felt very blessed and pleased that he was so healthy after some concerns in the pregnancy. When he was two weeks old the doctors noticed he had a slight fever and was breathing at 3 times the normal rate for a newborn. At one month he spent a weekend in the hospital for tests and they detected a loud heart murmur. We quickly took him to Children's to be assessed by cardiology who reassured us that it was an innocent murmur. For the next 6 months Andrew battled chronic chest congestion and diarrhea. We thought that he may be asthmatic. At 8 months Andrew was in the hosptial for another chest infection when he began vomiting uncontrollably and had horrible diarrhea and would scream for hours as if in pain. After two weeks of testing they could not find a cause but Andrew was no longer breastfeeding and was not drinking hardly any formula. About 6 weeks later he was admitted to Children's hospital for his first of 3 lengthy admissions. On this first admission they diagnosed him with Crohn's disease and placed a central line in his chest so they could give him intravenous nutrition as he was becoming malnourished. He also began NG feeds (through a tube in his nose) for his formula. The GI doctors put him on large doses of steroids to get the inflammation in his intestines under control and stop the bleeding there. After one month we went home. Yeah!! Two months later we were back in again. They tried adjusting medication and gave him intraveinous nutrition again. The doctors began to get concerned that he was not reaching milestones. For instance at 10 months he could not sit alone. We thought it was probably from all of his time in hosptial and didn't think at the time that there could be a greater problem. He continued to have horrible screaming spells where he would truly look like he was in agony. We adjusted medications to try and make things more comfortable for him. In Oct. (14 months of age) he was in hospital one more time and we finally took him off of his steroids. He had been admitted this time because from the age of 8 months to the age of 15 months he had not grown at all. He didn't gain weight, grow in length and his head didn't grow, thus, his brain didn't grow. The doctors were becoming increasingly concerned. He was released on October 16th Matthew's birthday, and we readjusted once again. We were continuing to NG feed him to make sure he got the calories he needed. He was sitting on his own and crawling but could not yet stand or walk. The last week of November of 1999 we went through a horrible event. Andrew began having seizures. I won't go into all the details from then till now but that made it very evident that the doctors were right and that there was truly a neurological problem taking place.

Today, Andrew has seizures that we try to control with medications, vomiting episodes, chronic diarrhea, ataxia (walks like a drunk man-stumbles into things, staggers), developmental delays (he has about 10 words that are understandable), asthma, episodes of screaming and, more recently, it looks like his heart may be enlarged. All of these things, the doctors believe, have a common thread. One disease process is causing all of these things to occur. We just don't know what. The thought is that the problem is metabolic (to do with the enzymes etc. in the body). It looks like it is a progressive disease as recently Andrew was fitted for splints for his legs. This is because his muscle tone has gotten worse and he was having difficulty walking without tripping over his toes all the time. It is our quest to find a diagnosis for Andrew. We want to know what is doing this to our son. We may not be able to stop what is happening, as many metabolic diseases are incurable, but at least we will know what it is. Anyhow this is the short version of Andrew's past 3 years. If I went into every detail I would be here till tomorrow!!! : )

Sunday, August 12, 2001 at 07:02 PM (CDT)

We have been thinking of starting a web page for a while to keep all our friends and family updated on Andrew. At last we have done it. Here you will be able to read updates on Andrew. We will try and update regularly regarding his health, medical information, therapies etc. and, ultimately, on our quest for a diagnosis.

We have just returned from a two week vacation in which for one week we did nothing but relax by a lake and int he other we did sight seeing and fun stuff with the kids somewhere we have never been before.

Now the countdown to Back to School and our Toronto trip begins.

The kids go back to school on September 3rd. Matthew in grade 4, Melissa in grade 2, Aaron in Kind. and our little Andrew begins preschool. He will attend a regular preschool with a one to one assistant.

We have confirmed dates for our trip to the Hospital for Sick Children in Toronto. We have appointments of September 24th and 26th and we are really hoping that we will be able to stay and do some testing the following week. We really, really hope that this trip will put us on the road to an answer as to what is causing Andrew's illness.

Thank you for checking in and I hope that this works like we hope and that everone can stay up to date on our special boy.

Alison and Martin

Click here to go back to the main page.

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