History

Thursday, July 10, 2008

The picture above is of Alec's tree given to us from Jen.

Our hearts still break and our arms ache to hold him just one more time.

(Lyrics to the song playing)

Lord I'm tired
So tired from walking
And Lord I'm so alone
And Lord the dark
Is creeping in
Creeping up
To swallow me
I think I'll stop
Rest here a while

And didn't You see me cry'n?
And didn't You hear me call Your name?
Wasn't it You I gave my heart to?
I wish You'd remember
Where you sat it down

And this is all that I can say right now
And this is all that I can give

I didn't notice You were standing here
I didn't know that
That was You holding me
I didn't notice You were cry'n too
I didn't know that
That was You washing my feet

Monday, May 5, 2008

EDIT TO ADD MAY 7:
Please visit our family blog I created
Http://lovealwaysperserveres.blogspot.com

I am in need of some Alec memories. I want to put everyone's memories of Alec at the end of his funeral scrapbook that I am going to do. Plus, I just need to hear that he is remembered. Even if you never met Alec in person, or Turk or I in person, just a note to say how Alec affected your life I would love have. As Aaron and Emily grow I want them to be able to "re-live" Alec's life.

Feel free to post in the guestbook or you can email me privately at the address listed below.

I know I haven't been the best at returning phone calls or emails. Some days it is all I can do emotionally to work and take care of my household in the evenings. I do have to say Kudos and much love to those of you who continue to write, call and support me and our friendship(s) when I haven't been able to. You know who you are! MUUAAHH!

I can't wait to start reading what you all have to say.

Friday, March 21, 2008

Very often I get people asking me if I am going to update again or if I am just going to be done with Caring Bridge. Frankly, what is there to update? There are no more hospitals, drs appts, therapies, school, or family time with Alec. We miss him. We miss him so much that it is unimaginable and unfathomable for people who have “normal” lives with “normal” children. Our hearts are broken. Alec is on our minds every day.

Every instance that occurs in our lives will forever be BITTERSWEET.

“Look at Aaron sitting on the couch with Emily reading to her and Alec doesn’t get to sit on the couch with them and be a part of this sibling bonding.”

“Here we are at the rodeo and Alec is not with us so we don’t have to worry about his wheelchair or carrying. We are getting ready to go and the only thing we have to haul is Emily and one small bag, oh how we wish we were hauling Alec and his belongings out to the van.”

“Look at Aaron and Emily in this picture sitting in front of the Christmas tree; and Alec isn’t with them. Here we are gathered on the floor, Turk, me, Aaron and Emily playing a game of Sorry! And Alec is supposed to be in Turk’s lap.”

“Look at Emily jumping up and down in her jumparoo as we all laugh at her, and Alec doesn’t get to see her or hear the music.”

EVERY SINGLE THING in our lives is without him and with every joy comes the sorrow of not having our family unit complete. And it will be this way until we all die and are reunited in heaven. We will forever grieve what we have lost.

I could write this over and over every day because that is how we are and what our reality is.

I think back to us 5 years ago, when I was just pregnant with Alec. Turk and I were on Train A – the normal lifestyle that the majority of you lead. We couldn’t wait to add to our family and see our boys play together and watch their personalities unfold. Then Alec was born and we joined the families riding Train B – the disabled world. We learned an entirely new lifestyle now filled with new values, realizing the items we thought to be so important when we were riding Train A to be not so important. While on Train B, we continue to imagine what it would be to riding Train A still, with the rest of our family and friends, but on Train B, we got to meet a new family and friends. These Train B friends understood the things that the people on Train A didn’t and never will because they don’t have the worry’s, fears, or tasks that the people on Train B do. Eventually some people on Train B change tracks and get stuck on Train C – the world of losing your child. The people on Train B cannot understand you quite as much as before because they are still on their train and the people on Train A cannot grasp the loss of this child or the disability in itself, because they have never been off of their tracks.

You do not get to choose what Train you are on, and even though Turk and I are on Train C, we still imagine what our lives would have been like if we were still on Train A for the year of 2008 and yet we still imagine also what our lives would have been like if we were still on Train B. How we would love to be sitting in the hospital with Alec stroking his hair, or hooking up a feed, or giving meds. How we would love to be sitting at the table watching our three children interact.

The sad thing is that the people on Train A can look at us from the outside and think that we are just like their group, not realizing that we are more like the people on Train B. The people on Train B look at us from the outside and think we are like the people on Train A, when we are really more like them. We are in limbo and I feel like we should be pushing around an empty wheelchair to prove that we are not “normal” or “typical”. We are lost like the other people on Train C and we will always long to be Trains A or B.

I often get asked how we are doing. We are doing great because that is what you want to hear and you cannot understand how we really are. Time does not heal. Time forces you to move on making it easier to deal with the anguish the longer time goes on. You can choose to escape reality and try to keep your world as close to the same as when your loved one died or you can choose to move on, because that is what everyone does and /or face people chastising you for not.

Everyone comes to the funeral and then they move on with their lives because they are only affected by your loss at the time of the funeral/visitation or when they are with you. We have to “move on” for our kids. We can’t be depressed for the rest of our lives because it wouldn’t be fair to Aaron or Emily to be cheated out of the parents and family they deserve. One person said to me that now we can just be happy and a happy family. WHAT? We were happy when Alec was alive. If anything, we are moving on as the same happy family we were only with much more sadness concealed within us. Some tell us we should be so fortunate to have had the time we did since we knew Alec’s death was inevitable. We know, but we don’t care. We will always wish that we had more time. Since when do people say “I wish that I didn’t have so much time with my child/children”?

The truth of the matter still goes back to what I said at the beginning of this entry: We miss him. We miss him so much. And you can forever etch this into your minds because it is forever etched into our hearts.

Friday, January 18, 2008

My sweet, sweet baby boy. I sit here today thinking about what was to unfold in our lives 4 years ago. Today was my due date and your daddy and I couldn’t wait to meet you. We anxiously wanted our two boys in our arms. You got to make your appearance a day later!! You were so cute when you were first born with your little nose flatten against your face from being turned the wrong way. We loved you the instant we saw you and there was nothing that we wouldn’t have done for you. Little did we know how much our love was to be tested over the course of your short life.

Three years ago on your 1st birthday, most of your doctors couldn’t believe that you made it! You should them how strong you were and that you weren’t giving up. This made mommy and daddy fight for you even more. The morning of your first birthday you were so, so happy. I remember getting up early with you because you were jabbering from your crib. You were so smiley and so cute with your chubby little face and fluffy hair.

Two years ago on your 2nd birthday you were so sick and didn’t feel good at all. We wanted to take you and your brother to the cities for a weekend away. Even though you weren’t feeling the greatest, it was a good trip. We got to go to build-a-bear where you made a birthday bear and your got to get together with your friends Wyatt, Zach, and Patrick for birthday cake! I still remember waking up in the hotel room the next morning and you and Aaron were all cashed out on the bed.

One year ago, for your 3rd birthday, we were down in Florida for your Make A Wish trip. I remember going to see Barney on the day of your birthday. At the beginning of the show the lights were turned off and all of the sudden there was a big bang, the lights came on, and Barney was up on stage. You jumped during the bang, but were SO EXCITED to see Barney. We went on the ET ride after that and you got to sit in a bike seat and rode up and down. That night Give Kids the World gave you a birthday cake, which we had cake and ice cream at the Ice Cream Palace. What a wonderful day.

This year, for your 4th birthday, you get to spend it with Jesus. While we are so happy for you to not have to know any more pain and suffering, we are sad for us to not have our little pumpkin in our arms. Our hearts are aching and suffering for you, but it will never compare to what you had to endure in your life. Poozle bear, we love you, we miss you. May you have a wonderful day surrounded by the love of God. Until we meet again………..

P.S. Aaron wants to send your hat he made for you up to heaven on a balloon. Be sure to be watching for it!

Alec Donald Ideker, beloved son of Brad and Stephanie, cherished brother of Aaron and Emily, was sent from Heaven on January 19, 2004, and returned home on November 1, 2007.

Although Alec’s body in this life was plagued with much suffering due to mitochondrial disease, his soul was perfect and pure. His suffering didn’t stop him from having good days and showing everyone around what life was all about. Alec could not talk, but he made sure everyone around him knew what he was thinking and wasn’t afraid to tell you if you pushed him. Every “inchstone” he accomplished was cause for great celebration. On the days he was feeling well he worked hard at therapy and loved the interaction. Music was a favorite of his along with being rocked and snuggled. He loved children and spent some of his days attending preschool at Harrisburg Explorer Elementary and CCHS. Alec was also cared for by many doctors, therapists, teachers, and nurses who he was so fortunate to have met. Most of all, Alec adored his big brother, Aaron, who unselfishly served Alec better than anyone.

Our “Brave Little Soul” was the greatest miracle we have ever been given, and through him many miracles were performed since the day of his birth. We are so blessed for knowing Alec and rejoice in his healing for he is now running free with the Lord. What a gift Alec was to our family; he will be missed so very much.

Tuesday, December 4, 2007 10:55 PM CST

UPDATE: We are selling our van. It is a 2005 Chrysler Town & Country with the VMI Northstar Conversion. 65,000 miles and we also have the second seat in the back. If any on is interested send me an email to stephanie.bsi@alliancecom.net or call me at 605-351-2490. I can email pictures if anyone needs/wants them.

Hello everyone, I never made a journal entry before so you’ll have to bear with me. Yes this is Alec’s Dad typing this. It has been just over a month now since our little pumpkin passed away and we all miss him very much. I really miss giving him his meds, nebs, vest treatments, giving him his baths and especially watching Sunday football with him all snuggled in my lap while Mom and Aaron took naps. I bought him a Tony Romo jersey the day before I left on my trip to Dallas so he could wear it when I was gone and I was really hoping he could wear it while we watched football, but unfortunately we never got the chance. There is one thing I do not miss is the thousands of seizures we watched him have, every time he had them it would make me cringe, he is seizure free now, and I’m thankful for that.

It is pretty lonely without him at home, it is very quiet even with the Emily, and I’ll tell you another thing taking care of a healthy child is pretty darn simple. It is really simple when we were blessed with a good little girl so far. I’m probably going to eat my words when she turns 13 as though I’ve heard. Alec was so amazingly strong, it is unbelievable The Ideker’s and Blauwet’s are thought by most to be short and strong, but not one of us are as strong as Alec was. I don’t know any of us that could’ve or would’ve made it through all of what he went through in almost four years of life. All the blood draws, needle sticks, hospital stays, seizures, stomach issues from the many, many medications he was on, choking issues, upper airway problems and the list goes on and on. Unreal!

Speaking of strong, Alec had an unbelievably strong heart as it was going as fast as it could until his last breath, he really couldn’t have passed any more peaceful in Mom and Dad’s arms.

Alec really couldn’t have asked for a better Mom and Brother. Every time Alec and Aaron went to bed at the same time, Alec had a big seizure almost every night and we would always rush in there. Aaron was already there with his arm around him saying, It’s O.K. brother is here, Shhh, Shhh, it’s alright. Amazing for a 4 to 5 yr. Old. Aaron never once showed jealousy or spite toward Alec and all the extra attention he got. God blessed us with amazing children. Alec was especially blessed with the Mother God gave our kids.
She was amazing with what she did for Alec, she fought with everything she had to make things right for Alec, she fought for all the right doctors, fought with insurance companies day in and day out, nursing cares, she came out to be a big b_ _ _ _ in some people’s eyes, but whatever was right for Alec and his well being was what she pushed for. She also did more than I can even begin to start typing or that you could even imagine. Thanks Stephanie!

I would like to end this by saying our family is truly thankful to have had Alec and the past three and a half years have been incredible, but we are also thankful to have been the parents chosen to love and care for this awesome child of God. Alec touched many, many people’s lives in his very short journey and I’ll bet he just got a takedown to win another wrestling match. I can’t wait to see him wrestle. He’ll be the first Ideker to wrestle over the 135 lb. Weight class.
We were also blessed to have such a wonderful nurse in Jen. She was at our home every night and day since the Monday before he passed, she was the most wonderful nurse we could’ve ever asked for even though we didn’t show it most of the time. Thanks Jen.

I would also like to thank all his therapists, doctors, fill- in nurses, family, friends, teachers, our church, neighbors, Make A Wish, Mary from Sanford Hospice, my brother Paul, Building Sprinkler and I’m sorry if I left anyone out but you know who you are, and the many many people who gave their support during Alec’s life here on earth. I would also like to say a big thank you to all you people who gave us a card, memorial money and prayers. I can’t believe the outpouring of love all of you give us, it is very much appreciated and we are and always will be indebted to you all. THANK YOU!

Just remember if you find yourself complaining or frustrated about the minor things in life just try to remember we are only here for a little while so make the most of what you have and be thankful for everything you have because it could always be worse! I must sign off before I try to become something I’m not. Brad Landers!

Monday, November 26, 2007

What a drastic turn of events that took place earlier this month. I never expected to be sitting in this position on my maternity leave. But 4 years ago I never expected what Alec’s life was going to entail either.

I have not been doing much. The week before last I was quite lazy and one day I actually watched tv for the entire day with the exception of dropping off and picking up Aaron from school. Watching mindless television deters my thinking and is only a band-aid providing temporary relief from the reality that Alec is gone.

I go out to the cemetery a couple of times per week or so. I get anxious to get there and almost feel like I have to hurry, but then when I get there I don’t really know why I was hurrying. We all went out to the cemetery Thanksgiving Day. I cried the entire way there. How unfair it was that Alec had to suffer, how unfair that Emily will never truly understand our family with Alec when he was alive, how I was supposed to have 3 kids in the backseat. The list could go on and on.

Alec’s absence is a huge gap in our lives. Brad called me wondering what time he should be home from work before we left for my grandparent’s house. I told him and his first response was “Is that going to be enough time to get the boys ready?”

This Thanksgiving was hard and Christmas is going to be worse. If it weren’t for Aaron I wouldn’t even be celebrating. Brad put up the outside Christmas lights yesterday. Yesterday we also got Alec’s tree that Jen gave to us delivered and planted. It is an autumn blaze maple. We are also going to take some of Alec’s memorial money and completely redo the front landscaping into a memorial garden for Alec.

I will say that although our hearts are broken we are so thankful that Alec is no longer suffering and that Aaron and Emily (so far) are healthy. With that I will leave you with some pictures.

ALEC AT CHUCK E CHEESE ON OCT 20

MORE CHUCK E CHEESE

TRICK OR TREATING AT GRANDMA'S ON OCT 28

ALEC'S LAST AWAKE DAY EARLY AFTERNOON TUES OCT 30

MY 3 KIDS

HALLOWEEN MORNING

OUR LAST FAMILY PHOTO TAKEN 12 HOURS BEFORE

EMILY'S FIRST DAY HOME

SITTING IN ALEC'S TUMBLE FORM CHAIR

TALKING TO DADDY

SOUND ASLEEP

Friday, November 23, 2007 9:57 PM CST

I have been without computer access since my last update. Watch for an update soon. I am working on one.

Stephanie

Friday, November 9, 2007 8:20 AM CST

I can’t believe it has been a little over 1 week. I want to wake up and believe this has been a horrible nightmare, but in reality my nightmare has only begun.

I was at home alone for about an hour Wednesday afternoon and it was the longest hour of my life. Emily was sleeping and Aaron was working on some art activities he wanted to do. I had nothing to do. Alec should have been getting a neb, then vest. I would have been getting formula ready and meds laid out for the evening.

We have been trying to keep busy, working on trivial things and visiting with friends and family during the day. Nights are the worst. It is too quiet and completely boring. Our bodies are so used to getting up during the night for Alec; it is something that we can’t shut off. Whenever I walk out of the bedroom I automatically turn to his door and look at where he would be sleeping on his bed, but he is not there. There are no words to explain how much I miss him and how much my arms ache for him.

We are now forced to adjust to a completely different lifestyle. What my life has revolved around for almost 4 years is gone. I heard an old song by Michael W Smith yesterday, “Place in this World”. I definitely need to find my place again.

Monday, November 5, 2007 7:34 AM CST

I sit here in silence not having any words. The house is too quiet. Right now I should be leaving for work, Alec should be having a vest treatment watching cartoons, Aaron should be finishing up breakfast, and Jen should be getting meds ready. This is what was happening at our house only 1 week ago. It seems like an eternity ago.

Thank you to all of you for the guestbook entries. We love to look at them and it is an addiction for us to keep reading them.

Alec looks absolutely beautiful and so at peace. Throughout the visitation I couldn’t help myself by checking on him from where I was sitting. Such a habit to always have my mind making sure of meds, feeds, if he is sitting okay, if he is uncomfortable in any way, of wants out of his chair, etc. I don’t get to do that anymore and I am so sad. I am so, so sad and I cannot stop crying.

Saturday, November 3, 2007 10:22 PM CDT

Sorry for the late update, but things have been beyond crazy.

See www.millerfh.com and click on Alec's name for exact funeral arrangements.

Stephanie

Friday, November 2, 2007 10:25 AM CDT

Our emotions are all over the place right now, and you just have to wonder God’s timing. 24 hours ago our little boy was called home and 4 hours ago we welcomed our beautiful little girl into our family.

Emily Dawn was born at 6:36 this morning and weighed 8 pounds, 8 ounces. We love her so much and gave her the middle name Dawn after Alec, whose full name was Alec Donald (after Turk’s dad).

We are still numb from the loss of Alec and how we long for just 1 more day, or hours, or minutes, even seconds. I miss him so much and words cannot express how a part of me will always be gone.

We are not taking visitors at the hospital. Today we are finalizing Alec’s celebration of life arrangements. For now the visitation will be Sunday at Miller Funeral Home in Sioux Falls, and the funeral will be Monday in Sioux Falls. I will post details later once times are official.

Thank you all for the guestbook entries as we can’t stop reading them. Thanks also for the prayers. It is because of that and God’s strength that we will be able to get through.

Thursday, November 1, 2007

**ALEC earned his wings a short time ago. He went very peacefully. I do not know when I will update again.

I am sitting hear crying and can't stop because I am so selfish for me. I am so sad. I already miss my little boy that we got see just only a few days ago. How are lives are change in one instance.

I can go back to the beginning on Alec's life and I had those same feelings having lost the little boy we were "supposed" to have and having lost the dreams we had for Aaron and Alec together.

We knew that Alec's life on earth would be brief, but I guess we expected later rathan than soon or perphaps maybe not so quick.

We know that our situation is in God's hands and there is nothing we can do. My doctor asked me yesterday if I wanted to be induced, but we do not want to do that. I told her that this is all God's plan, though we don't understand, I am believe that God will send our baby when His time is right.

Alec's state has stayed reletively the same. His color has turned gray all over as of last night. Jen and Turk gave him a bath and then the neighbors kids that the boys go trick or treating with each year came over and we got some pictures. All of that I think stressed Alec out because we ended up giving some of his pain meds in the early evening.

I don't even know what else to say other than we are so sad and so thankful for everyone praying for Alec's healing. It is truly an answered prayer that he is so peaceful. Because of this Alec is able to stay at home with us. He only had one seizure yesterday after his bath.

I am just so sad I can't even explain but I am so happy at how much better off Alec is going to be. He is so lucky.

Wednesday, October 31, 2007 6:22 AM CDT

What do I say? Where do I begin? My emotions are so jumbled mixed with so much exhaustion.

Alec’s day continued to go down hill. Thankfully we took Aaron out of school that he could see Alec awake for the brief time period that he was because I can’t foresee us seeing any of his personality again.

We had immediate family come in yesterday to say their goodbyes. At this time we are requesting no visitors due to Alec’s state. More than likely we will not be answering phone calls either so please leave a message if you do decide to call.

We called hospice out this morning to place a catheter in and Alec is non-responsive and basically in a comatose state. His eyes are completely bloodshot. We currently have him on oxygen, which we need to take him off of because the oxygen could prolong life. We maybe have a few days left with him.

At this point in time, we are just snuggling and loving him up. We can’t even begin to imagine not have our little boy with us. How do you witness two miracles, Alec’s healing and our baby’s birth, and survive? We just cannot comprehend God’s timing in our current situation, but we do know that His will is best and we will let His will be done.

We are so lucky to have had Alec with us for as long as we have had, but yet we are still longing for more time. One more time to see him smile, one more time for him and Aaron to play, one more time to look into his eyes, one more time to meet his new sibling, just one time to hold all 3 of my children in my lap, one more time…….for everything.

However, would one more time matter? We would still long for one last time regardless of when.

Thanks everyone for the continued prayers. They are truly what matters and we need to trust in God. Isn’t that what having faith is all about?

Tuesday, October 30, 2007 2:43 PM CDT

Alec’s night was not very good. Even with the morphine he struggled all night long. He had high respirations and his heart was working hard. He is still having issues with the fevers and chills and we are continuing the motrin/Tylenol round the clock.

We had hospice come out again this morning for his regular Tuesday visit. We have stopped his feedings due to how much fluid he is retaining. I don’t know if we will restart them or not. We are cutting down meds and only giving him what will provide him comfort, which will take out the CoQ10, acidopholus (sp) and the vitamin that we have started adding to his formula. We have upped giving the morphine to every hour if we need to and are going to add ativan. He is extremely swollen and we gave him a lasix pill to help him out. His color has changed quite a bit in the past couple of days and is the worst in the extremities. We haven’t been suctioning much as it doesn’t seem to help him, but today it was starting to get bloody.

Hospice speculates that Alec will probably pass away within this next week. As of now it really appears that his cardiac system is starting to fail, which will be my answered prayer because I have always wanted him to pass away but just his heart failing.

Alec finally woke up early this afternoon and we pulled Aaron out of school so that he could see Alec awake. I am not going to be going back to work for the rest of the week. School for Aaron will be dependant on how things are going here at home. I don’t know what Turk is going to do.

Sorry if this update is choppy, but I have been trying to type it for the past couple of hours, but I keep getting interrupted.

I will update later tonight if I get a chance or I will update tomorrow morning.

Monday, October 29, 2007 9:30 PM CDT

As usual, I have let time go far too quickly without an update, but we are right now in need of some urgent prayers. I will start with today and then try to backtrack things a bit.

Alec has continued to worsen over the past week and we have been giving him morphine most every night to help him with his breathing. He is very junky and very congested. Tonight when we came home he was struggling quite a bit with his breathing, had flaring nares, retractions, and was running a low temp. He was also seizing through the roof, probably every minute +/-. I gave him morphine and motrin at 6pm and called hospice shortly after that. We waited a bit to see how the drugs would take effect, and sadly they were of no help. The on call nurse came out and we gave him diastat to stop the seizures. That did help to slow him down. His heart is working hard right now and we have him on 3 liters of oxygen. I am currently laying in bed with him while he is goosebumped from head to toe, still struggling to breathe worse than he was at 5:30, and is absolutely terrible. His fever is going up past 100 so I need to get some Tylenol. I will add more to this update later, but I have to go to be with him.

Please pray as I am due one week from today and I cannot leave Alec in this position to go to the hospital to deliver a baby.

Stephanie

Friday, October 5, 2007

I don’t have too much to report other than Alec has been up and Alec has been down! Last week (wk of Sept 24) Alec had much more of a down week. He required morphine for a few days due to his respiratory status and he was very irritable. Then he was good for a couple of days and now it seems he is on his way back down.

We have been putting oxygen on him at night while he is sleeping because we have found out if we do that then most nights he will sleep from 8:30ish until 6:30 or 7 straight through. He has not required more than 2 liters of oxygen and most nights it is ½ or 1 liter. Last night he was up sometime around 4, but I am not sure. It may have been before that. He seems to be a bit more congested and is starting to cough again.

I am not sure if I mentioned this in my last post, but we have decided to put the entire scopalemine (sp) patch on Alec to dry up his secretions. He is only supposed to have the half patch due to central nervous and cardiac side effects, but our philosophy is that he is in hospice so why not keep him comfortable?? So we have the entire patch on and are changing it currently every 72 hours. I started charting to see if the last day before we are to change it his junkiness increases since that is how it seems to be. We can then change it to every 48 hrs.

We are still having MRSA issues. I missed one dose last week and one spot showed up. It is now healed and nothing more has been an issue but we were going to stop the bactrim after this weekend (we are going to a pool party!). So we are now going to just stay on the bactrim for the rest of Alec’s life. It doesn’t seem to affect him much so that is good.

Aaron has successfully transitioned to sleeping downstairs in his new cowboy bed set (courtesy of the aunts and great-grandmas). He has been getting a much better night sleep and the baby will be joining him downstairs once I go back to work. Things are good in the pregnancy department other than getting up to go to the bathroom 4 times a night (and add in the extras when we need to be up for Alec!). The hardest part is that I am on lifting restrictions with Alec so I need to arrange help when Brad is not going to be home. I am very ready to have my body back to myself and have a lap back!!

Again, we must say thanks to all of you for the continued prayers and the gift of food! We are heading up to Gillette in St Paul on Monday to see a couple of drs and get Alec’s wheelchair adjusted. I will update next week with how things went. Enjoy the photos from our trip to the Apple Orchard last weekend.

Friday, October 5, 2007

Friday, September 21, 2007 5:09 PM CDT

Alec seems to be holding his own. He is still deciding to get up around 5 most days and if we are lucky he will make it until 6 or a little after. We changed his school schedule around this week and it seems to have made a bit of difference for his sleep. He is now napping around 2 to 2 ½ hours a day (from appx 9:30 until 12) and then getting right on the bus for preschool, which is from 12:30 until 3pm.

As you can see we made it out to the USF and Northwestern football game on Sat with the boys. The picture above is the boys with my brother, Caleb, who plays for Northwestern. Alec slept through about ½ the game all wrapped up in a cocoon blanket!

Monday Alec had an awesome evening. I would have to say it was the best evening he has had in the past 4 months. He was so happy and all full of smiles. We also went out and splurged and bought the boys each a Halloween costume. Alec is going to be a frog and Aaron is going to be a red power ranger. Normally I would not buy costumes, but the last one I bought Aaron was $3 on rummage and I haven’t ever bought one for Alec. Hopefully Alec will be able to wear it.

All and all we keep plugging along and Alec is the same. No changes for the better and no real changes for the worse. For the most part we are just trying to spend time as a family and make memories.

Thursday, September 20, 2007

Update to follow within 24 hrs..........

Monday, September 10, 2007

I know, I know, this update is long overdue……..

Labor day weekend we took our camper out for the last time for the season and Alec on what we believe to be his last camping trip. The weekend was overall pretty well and Alec was up before 6 only one night. When he did wake up coughing and hacking at 4 I took him up in bed with me and he finally fell asleep around 6:30 and we snuggled and slept until 8:30 which was nice.

Alec made it to his first day of preschool on Tuesday the 4th. Of course he was sleeping by 9:30, but I am pretty sure he enjoyed the first little bit anyway. He did not make it to school any other day last week. He started to go downhill pretty fast and by Wednesday night his breathing was terrible. His sats were in the 80s with him having retractions and heavy breathing. I was so exhausted from not sleeping the past couple of weeks, plus having had a fever, chills, cold/allergy issues bad the night before. I put oxygen on him, which is something that we have never done before, and I couldn’t keep his sats above 92-93 on 2 liters all night. Alec was up most of the night struggling and by 5 he was coughing up blood.

Now, some of that has passed and he hasn’t had any oxygen which I am not a fan of putting on him at night anyway simply because I would rather he pass away peacefully in his sleep. Fri and Sat he slept until 6 and Sunday until 7! Aaron woke us up on Sunday morning because Alec had a bad bloody nose. Yesterday was the boys’ first day of Sunday school and Alec’s first day of SS ever!! We were excited that he was able to go even if it is only one time.

This morning Alec was struggling to breathe a bit and was up at 5. I should be getting up in the middle of the night to give him a neb, which wouldn’t really be a big deal because Turk and I really don’t sleep much at night anyway, but all I want to do is SLEEP! The continual neb and vest treatments seem to work pretty good and we have been able to suction quite a bit, especially in the mornings, from him just coughing stuff up.

Don’t feel bad if I haven’t called or email you back. It is not you, it is me. I simply do not have the energy and sometimes just don’t feel like talking. But PLEASE continue to call me and email me because I need you to.

Friday, August 31, 2007

Things have continued to be up and down for Alec and for us!

Aaron started school last week Wednesday (22nd) and things are going great for him other than trying to adjust to no nap and an earlier bedtime. No I didn’t cry when I brought him to school!! I was just thrilled that he was able to enter this chapter of his life and this milestone. Aaron has been quite adamant lately on us putting Alec to be with him when he goes. One night this past week Aaron sang Alec to sleep. He was so proud. Brad and I were trying to listen outside the door without Aaron noticing. A couple phrases I caught were “Alec, Alec, go to sleep” “It’s time for bed and time to go to sleep Alec” and the most heartwrenching “Alec, Alec, I will protect you”. Aaron sang to him for 15 minutes while touching and rubbing Alec. I wish I would have been able to get it on video.

Last weekend Alec started with a cough that has proceeded to get worse and now maybe somewhat better. Poor baby has such a hoarse, sore voice. Monday night he was up coughing and hacking at 3:30 and was up for the rest of the night, Tuesday he was up at 3 and up for the rest of the night, Wed he was up at 2:30 for about an hour, and last night he was up at 2:30 very briefly with some hacking but went to sleep without robitussen. He was then up at 6 this morning coughing and I did some suctioning and a neb and we snuggled until Jen got to our house. Aaron hasn’t been sleeping the best this past week due to Alec waking him up. We are going to have to figure out a way to get him sleeping in his bedroom in the basement.

I have had some people ask about hospice and what that means for Alec. Basically, we are not going to go through any life saving measures to keep him alive. Right now if his MRSA would happen to come back Alec would stay on bactrim for the rest of his life just to keep the pustules away. If he were to get an ear infection we would do antibiotics to help that clear. He continues to have terrible secretions and snot of which there is nothing we can do to help. We have been on a regimen of nebs, vests, and suctioning at certain times during the day and evening for Alec just to help him out a bit. He is currently on a steroid but obviously it is not doing anything! Right now hospice comes out to the house Tuesdays at 5 to evaluate Alec and go over our needs and concerns. As Alec becomes more frail and weak that will come out as often as we want/need them to. Right now Brad and I feel that Alec is pretty “stable” overall. The hard thing with all of this is that it could be weeks or it could be a months process. We have been told that going into hospice is not “giving up” on Alec but changing your focus to comfort care. But is a sense it is somewhat giving up or more so “acceptance”. Accepting that Alec will not be walking with a gait trainer or my support (something he was doing well with), accepting that he will not be starting kindergarten, accepting the seizures that ravish his body and not trying to figure it out, accepting that burial plots need to be bought today and it is not something to do later, saying goodbye to all the specialists and saying goodbye to our lives as we have known them since January 2004.

Monday, August 20, 2007

What a week. I am physically, emotionally, and spiritually exhausted. I can barely keep my eyes open trying to type this.

Turk and I decided over last weekend that we were going to discontinue the SQIG immune therapy and have decided to place Alec into hospice care. I have had a difficult time with this decision. People have said that putting Alec in hospice is not giving up on him but changing your goals to comfort. I guess it is not so much giving up as it is to accept the reality of this disease and realize that all the things that the drs didn’t expect Alec to do (such as live, interact, walk with assistance, etc) are coming to an end. I had a dream the night that we came home from the hospital. In that dream I was trying to find stuff to save Alec and I was just frantic and desperate because he is dying. I woke up realizing how selfish it was to keep him alive for me and prolong his suffering.

This past week was busy as we have been trying to plan things for Alec’s funeral. The beginning of the week was much rougher as Alec wasn’t doing so well. We meet with the funeral home, got things set up with the church, and have purchased our plots at the cemetery, although we still have more to do. It seems to be a never ending task, but we do not want to have to make this decisions when the time comes for Alec’s death because we will have enough to deal with.

Alec was really struggling earlier last week with Tuesday being one of the worst. Very junky, no cough, just being out of it, however he has seemed to have popped out of it and had a stretch of pretty good days until Saturday night. The night was horrible. Alec kept cramping up, moaning, his breathing pattern kept changing (almost like he was hyperventilating), choking episodes, and screaming seizures. The second time Alec choked he was vented and all of his vitamin given that night in his stomach was vented out. I don’t think that he started sleeping sound until after 5 and neither did Turk and I. Fortunately Aaron, who was lying in bed next to Alec all night, slept like a rock and didn’t hear anything. Being the good child he is when he got up at 7 and wanted to play so Turk and I told him to go downstairs and play and he didn’t come up until after 9:30.

Today Alec has an upper gi to check on reflux, but we are pretty certain that his nissen wrap has come undone. Tonight is Aaron’s kindergarten open house. He starts school on Wednesday and the Alec is going to feeding clinic and to see his pulmonologist. Obviously Alec is having stomach issues, but I am interested to see what they say, especially since having the g-j tube placement nothing is moving out of his stomach.

We do want to thank everyone for the meals brought by. It helps to not have the stress of trying to prepare supper with everything else we have going on. We also want to thank you all for the prayers. We continue to ask for God’s timing on Alec’s death along with a peaceful passing.

Thursday, August 9, 2007 7:51 AM CDT

The plan is to go home today and most likely pretty soon. We are still waiting to talk to Alec's gi dr, but if he can't make it down today then we can do what we need to on an outpatient basis.

We are going to change Alec's g tube to a gj and try continuous feeds to see how that goes and if it will help Alec's junkiness.

We talked to the pulmonologist on call and of course we can put in a trach, but that is an option that Brad and I decided against over 3 years ago and I am glad we aren't going to do it. We see Alec's pulmonary dr in a couple of weeks and we may possibly set up a sleep study and put Alec on c-pap.

We can do the c-pap and the feeds in hospice, but one thing that Brad and I need to decide on is to continue with the SQIG treatment or not for his immune system. Once that is discontinued we would enter the hospice program.

Brad and I also need to decide on school for Alec. It is something that I know that Alec loves, so Turk and I will have to decide that pretty soon. I have mixed emotions about it. On one hand he likes it, on the other hand will he be strong enough for it?

Lots of decisions. Again I cannot say enough thanks for the prayers and such. Time for Alec on this earth could be very brief or this could be a long drawn out process. So please pray for God's perfect timing throughout this all.

Wednesday, August 8, 2007 8:14 AM CDT

WEDNESDAY 10:15AM (Previous am update below)

After a long discussion with Alec's primary dr we have decided to forgo the port. We are so thankful to have this dr with us since Alec's birth as he truly knows what we have been through with Alec.

We are now going to begin focusing our care for Alec toward more comfort than anything. We are not entering hospice right now, but it will be something we do sooner rather than later.

Right now our focus is to help Alec to breathe better, which may be caused by secretions, reflux, or body deterioration. We are waiting on a consult from pulmonology and gi. It is possible that we would put in a gj tube if we are dealing with reflux. We may try a brief stint with steriods to help him. We will see what happens later today.

Of course, we knew that this time was near, but it doesn't make things any easier. However, we gave Alec to the Lord a long time ago and we know Alec continues to rest in the palm of His hand. Alec may be healed within days, weeks, or it may even be months. It will all be in the Lord's timing and trust it will be at the appropriate time.

It is so selfish of me though because I want Alec to be alive long enough after the baby is born so that we have a family picture of the 5 of us. And it is a selfish, trivial thing because we will always be a family of 5 regardless if Alec is in heaven or in our home.

I am currently looking into counseling for Aaron. Even though it will probably be out the nose in cost, it will be of benefit for him in the long run. I talked to his doctor about it and we both feel that it will be good to have Aaron with a counselor now to develop a relationship before Alec dies so it will be easier for Aaron to talk to this person when Alec does pass away.

Again, we just want to thank you all for the continued prayers. These prayers are what sustained us and help us to make the best decisions for Alec.

WEDNESDAY 8:15AM

We could not get an iv in Alec last night so we have discontinued antibiotics for the time being.

Alec was also put on the surgery schedule for a port at 9:30 this morning which we have postponed for the time being. We are currently waiting to talk to his primary doctor who is rounding this morning and the surgeon said that we could do surgery this afternoon or tomorrow if we are going to proceed.

It seems several of the drs and nurses who have been in to see us the past couple of weeks have all brought up where we are at with code status, end of life, and quality vs quantity.

Is Alec losing the lines two days in a row our sign to have surgery or not have surgery? Is the fact that so many of our drs keep bringing up end of life stuff our sign to move into hospice and let nature take its course?

We have no idea what way is the right way to go. My prayers have always been for God to prolong Alec's life if Alec can get over whatever hurdle he is facing at the time and have a good quality of life afterwards.

Tuesday, August 7, 2007

How quickly things can change. After spending all afternoon at peds outpatient in the ER we got Alec's picc line working and flushing fine.

Today I got a phone call from the nurse that Alec's picc line was out. Nobody has any idea how this happened. So I have spent this afternoon trying to figure out what we are going to. Primary wants us to do emergency surgery and have the port placed, pulmonology is out of town until Aug 17, Infectious disease does not want a port put in and see no need for the iv access at this time, and I am still waiting to hear from him immunologist.

We are now getting admitted to the hospital because it seems as though Alec needs an IV for his IV antibiotics. So they are going to "try" to get an iv placed, but we have been instructed to keep him NPO (nothing to eat) presumably for the surgery.

It should be a long and interesting night as I am already exhausted from dealing with fighting drs.

Monday, August 6, 2007 1:06 PM CDT

Stephanie just called and they are headed to the ER with Alec. His PIC line is pluged and they are in need of many prayers. Please pray for Alec and also for Brad, Stephanie, and Aaron, as this is an uncertain time for them too.

Let God's will be done and know that it is right.

Trista

Friday, August 3, 2007

We came home from the hospital yesterday afternoon and are continuing to administer the IV meds at home, which sure beats sitting up at Sioux Valley! It is really hard to say right now if Alec is better or not. His oxygen levels have been better and his junkiness overall is better than it was, but not “better” if that makes sense. As of now we are going to be on the iv stuff until the 9th and then switch back to the oral bactrim for the MRSA. We are going to try to keep the line in and open for a while since he is so terrible to get something in. How Alec responds to the antibiotics will determine if we are going to pursue a port or if we are going to enter hospice care.

Right now we are dealing with Alec not sleeping due to increased seizures from the antibiotics. He literally did not sleep the entire night last night with a double dose of the neurontin that he normally receives. Now today he slept for 2 ½ hours which was great because his little body I am sure needs it. We are now on option 2 for medications for sleep which is increasing his melatonin. Option 3 would be an increase in phenobarb or clonazepam which will increase his secretions so this option is VERY low.

We are all exhausted and in need of sleep, especially me after trying to sleep on that chair bed and being pregnant and uncomfortable.

Again, I am going to extend the offer to all of you who would like to come and spend time with Alec. Just call me to let me know. Brad and I don’t have to be home either as Jen is there during the day with him. I am going to cancel his last week of school next week.

Thanks to all of you for the prayers, emails, guestbook entries. I know that I am terrible at responding and for that I am sorry. My time the past few months has been very thin between everything going on. Please know that I do get them and love and cherish each and every one.

Tuesday, July 31, 2007

NOTE: If you know how to archive the guestbook, please let me know. If you are having trouble signing it, after you click on the link let it load for a bit and then click on the stop button on your browser bar and it should let you in.

We were able to go on our vacation last week, which was nice, but Alec struggled for most of that time. He slept a lot, which was good for him, but he was very junky whenever he was awake. We made a trip into the cities to see Dr Shapiro (his immunologist) on Thursday the 26th. Alec has an ear infection after a month of oral antibiotics! It was decided that Alec needed IV antibiotics, but since we were on vacation we were going to get things figured out on Monday.

Over the weekend the junkiness and yuckiness continued to get worse. Sunday night I hooked him up to the oxygen saturation moniter at he was at 83 percent!! Yikes! He bounced between 83 and 88 all night. I felt like I should bring him in, but Brad being the voice of reason said that he had probably been like that the last two nights, we just didn’t hook him up. Which is true, plus the ER is just a waste of time for us.

Yesterday I was able to get Alec a direct admit up to the peds floor at Sioux Valley (Sanford). As of now, we are still sitting the same as we were yesterday. He is still junky, having the penis discharge again, his nose has NOT been bleeding profusely like it had been, but struggling to breathe at times.

As for a prayer praise, the flight nurse was able to get Alec’s picc line put in on ONE try! She said it must have been all of the prayers she said on the way down to do it and commented to the dr that it must have been divine intervention. It definitely was as I prayed and prayed that if we were to continue to fight that a line would be able to be placed right away.

Last night we started IV rocephin and vancomyacin, Alec’s chest xray was fine, picc line placement was good. He has been desatting when he gets junky (which is a lot of the time) but I believe that they have now started some steroids.

His primary doctor asked us last night we where were at with code status on Alec and the pulmonary dr discussed with me yesterday on quality vs quantity of life for Alec. Quality of life is our focus, which is why we haven’t pursued a trach and such. This morning I met with Hospice care as to when and what circumstances do we place Alec in hospice. It basically boils down to how aggressive we want to be with IV antibiotics. So we will see if Alec responds to the IV antibiotics and we should know in the next little bit.

Brad and I have been taking shifts at the hospital as we know if Alec is moved into Hospice care that we want to be able to take the time off then. I don’t even want to think about that. Last weekend we started to let people know that he wasn’t doing well and that if people wanted to spend time with him that they should start doing so. Hopefully we will be able to come home soon and if you want to stop by the house just give us a call before you do so we can let you know when it is an okay time.

I am heading off to the hospital and will try to update when I know anything more.

Stephanie

If you are wondering what you can do, just pray for our family. I can’t imagine not having Alec with us.

Monday, July 30, 2007 5:00 PM CDT

Quick FYI:

We are in the hospital with Alec. Things are not looking very well for our little buddy. We currently have a picc line in place which was an answered prayer that it was gotton on the first try. I will update later after the drs have been in.

Wednesday, July 18, 2007

Alec's ECHO came out FINE!!! What a blessing and an answered prayer!! I cannot tell you how relieved I am and how thankful I am for God hearing my prayers to get us in for this appointment quickly.

Now, we begin down other routes I suppose. I am compiling records to get sent to a nephrologist (kidney dr) and we are going into see Alec's primary today. It now looks like he is getting a yeast infection from these antibiotics. He had a smaller nosebleed a couple of nights ago and a big one last night. I haven't been checking his tube, but I wonder if the junkiness coming back is from blood draining down his throat.

Monday I cannot remember if I mentioned that Alec got his first home IVIG infusion. He seems to be quite alert and has been happier in the evenings, which I probably have to attribute to prayers at this point in time.

Friday we are going in for bloodwork and a decadron (steroid) shot.

Please pray for
-Alec to be comfortable on these antibiotics that he needs for the next couple of weeks more.
-For him to be able to enjoy our vacation (if we can get out of here)
-For us to be able to go on vacation
-For Alec's butt tissues to not break and peel any more
-For an answer to be found for his edema issue
-For wisdom for ALL of Alec's doctors

Monday, July 16, 2007

UPDATE: TUESDAY JULY 17 2007

I just got a phone call from the cardiologist's nurse and we are bringing Alec in to get an ECHO done at 1:30 today.

On another note, I do want to thank those of you for the prayers, guestbook entries, and emails. I have not been very good at getting back to people lately, but please know you are thought of and appreciated.

(Last update Friday July 13)

My poor, poor suffering child. How I hate to see him like this. As you know from the previous entry, port a cath surgery did not happen for Alec on Friday. We got a decadron shot and it seemed to help out his breathing and junkiness quite a bit over the weekend. However, now it seems it is so slowing becoming worse again.

Today we went into feeding clinic and Alec is continuing to slowly gain weight! We are not changing anything other than cutting down his water because his GI is concerned Alec has some cardiology issues. He feels that Alec is retaining fluid (edema) and we need to get into see the cardio dr sooner rather than later. I asked him if it was possibly from kidney issues due to the strange discharge, but he doesn’t feel that is the case. I then asked (because I need to know!) what types of heart issues would cause this and he felt an enlarged heart or a weakened heart. I am now waiting for a couple of phone calls to see if we can get in this week as we are scheduled to be out of town all next week.

From a cardio standpoint, if you have been following Alec, you know that this is the only system that he has not had problems with. Each year we complete an EKG at Mayo when we see his neurogeneticist. The first one ever done showed issues enough to get an ECHO done because they thought that his heart was enlarged. Well, Alec has every symptom of an enlarged heart, so much so I had diagnosed him myself before the echo was completed! Praise the Lord that all came out well with that in 2005 and we have just been doing yearly checks.

With that being said, Alec has had changes that justify heart issues. He has been puffy, such as the 4th of July his airwalk shoes left little indentations all over the tops of his feet (which I attributed to heat), over the past couple of months his heart rate overall has decreased by appx 20 beats per minute, he cannot stand (unless walking) without his legs because purple, red and blotchy quicker than is used to, and they also do this when you are holding him on your lap and his legs are on either side of our legs and he has gained over ½ pound since July 2. Plus the fact that he has been having respiratory issues and the heart and lungs go hand in hand.

Aside from this appt, Alec has been cramping up from us trying to push mondo amounts of acidopholus/lactibicillus, having diarrhea due to the antibiotic, his butt is peeling from the poops, he is a bit congested, increased seizures from the antibiotic, not sleeping well from all of the above causing more seizures, and just downright tired and crabby.

Please pray for Alec to be able to sleep peacefully at night, nap peacefully each day, and for him to enjoy our vacation (if we go).

Please pray for the rest of us as we are all hurting with the thought of losing our son and brother.

Wednesday, July 11, 2007

UPDATE: FRIDAY, JULY 13

Alec is not having surgery today. I took him in yesterday afternoon and his respiratory system is too compromised to take the chance of putting him under. I have mixed feelings on this. Taking him into surgery could have complicated him, but not doing the surgery can also very much complicate things for him too.

I wish I could say that things have been well for us, but that has not been the case. I took Alec into the ER on June 30 due to a discharge from his penis. I initially thought it to be pus, but on further examination it is some sort of granules/powder. We are still in the process of trying to get this figured out due to nobody wanting to deal with it really and me not backing down. He started Cipro (antibiotic) on the 25th of June, and was switched to Bactrim at the ER.

We had a consult with the pediatric surgeon at Sanford regarding the placement of a port a cath for Alec. Thankfully she has been working well with us and squeezing Alec into surgery Friday. The infectious disease dr we have been waiting 2 weeks to get into increased the Bactrim on the 3rd of July. We then had to go back to see the pulmonologist on Friday because of Alec’s upper respiratory condition deteriorating and change antibiotics again to zyvox. The pulmonologist set up a renal/bladder ultrasound for Alec that took place on Monday after we saw the infectious disease dr.

I cannot say that I was overly impressed with this dr, but being in prayer for him for some time I am not going to count him out until we see what takes place in the next couple of weeks. He wants to leave Alec on the zyvox for a least a month, and Brad, Jen and I are not “cool” with that decision when Alec is already have many bouts of diarrhea daily with his butt starting to peel after only 3 days of treatment. Knowing my child and his history I wanted to push the port surgery sooner rather than later. Unless God provides a miracle regarding the MRSA it will be coming back as soon as Alec is off of the antibiotics. It has 3 times in the last 2 months and I cannot see this being any different. Of course, we have no plan in place for when this happens. So I will continue to pray for the ID dr so that we can locally have someone on Alec’s team to work on these heavy issues for Alec’s well being.

The ultrasound came back normal and my conversations with the drs nurses went like this:
Pulmonologist Nurse: Everything is normal
ME: So where to do we go from here?
PN: Hold on, I will ask the dr…………..call Primary Dr.
Primary Dr Nurse: I will talk to the dr and call you back…..call back...Call the infectious disease dr.

I feel like we are left out to fend for ourselves or to just let our son die. And the issue with death has been pushed to the forefront of our minds quite often lately. Aaron told my mom on the way to the ER at the end of June that he didn’t think that Alec was going to live much longer. Aaron had asked me a couple weeks before how long I thought Alec was going to live. I have no answer for him and all I can tell him is we don’t know and it is God’s decision. I know his fear, because Alec’s options right now are quite limited. There aren’t oral antibiotics that he can take that have been working and long term stuff reeks havoc on his GI tract. Now some new discharge in his urine. This port that is getting place on Friday…if it gets infected I don’t know what we will do, plus the great possibility due to Alec’s history that a blood infection would be fatal.

When I told Aaron about Alec’s surgery he immediately started to breakdown bawling. He is very apprehensive about this. He knows as well as Turk and I do that Alec may never be coming home again after this surgery if something goes awry. Last night during vacation bible school he was crying while they were singing. One of the moms working there brought him out and prayed with him and he was better. But he told my mom after she picked him up that he just got sad during a Jesus song. When Turk and I talked to him last night he was sad during the song because he missed Alec and is afraid of him dying.

As a parent it is so natural to want to protect your children, help them, and heal their hurts. But there is no band aid you can put on this one. As a mom I hurt so much myself for Alec and to have my 5 year old feeling this hurts that I can barely deal with is unbearable now that I don’t know how we will be able to heal once Alec does die. I hurt for Alec, I hurt for Aaron, I hurt for Brad, and I hurt. All I can do is cling to the hope that God is always with us and ultimately in control.

I’ve been lookin’ till my eyes are tired of lookin’
Listenin’ till my ears are numb from listenin’
Prayin’ till my knees are sore from kneelin’ on the bedroom floor
I know that you know that my heart is achin’
I’m running out of tears and my will is breakin’
I don’t think that I can carry the burden of it anymore
All of my hopes and my dreams and my best laid plans,
Are slowly slippin’ through my folded hands

So I’m gonna lay it down
I’m gonna learn to trust You now
What else can I do?
Cause everything I am depends on You
And if the sun don’t come back up
I know Your love will be enough
I’m gonna let it be, I’m gonna let it go,
I’m gonna lay it down.

I’ve been walkin’ through this world like I’m barely livin’
Buried in the doubt of this hole I’ve been diggin’
But You’re pullin’ me out
I’m finally breathin’ in the open air
This room may be dark but I’m finally seein’
There’s a new ray of hope, and now I’m believin’
That the past is past, and the future’s beginning to look brighter now
Oh, cause all of my hopes and my dreams and my best laid plans
Are safe and secure when I place them in Your hands

So I’m gonna lay it down
I’m gonna learn to trust You now
Oh what else can I do,
Cause everthing I am depends on You
And if the sun don’t come back up
I know Your love will be enough
I’m gonna let it be, I’m gonna let it go,
I’m gonna lay it down
I’m gonna lay it down
I’m gonna lay it down.

Monday, June 25, 2007

We did get out of the hospital and made it back to Sioux Falls in time for my ultrasound on June 7. The minivan sped from one hospital parking lot to the next, but we made it. And for that I was excited!

Alec’s last dose of the zyvox he was put on at the end of May for the 3rd MRSA outbreak was June 8. We are now on our 4th MRSA outbreak (which is pustules on his torso) which started on June 12. How is that for great? According to the sensitivity reports it is only resistant to penicillin and oxacillin. So I am wondering if we are supposed to be on antibiotics for the rest of his life or what??? When I talked to his immunologist last week his comment to me was “We are missing something on him (Alec). He shouldn’t be off of antibiotics for this short of time and be getting ill again”. I am all for figuring this out! With these MRSA outbreaks comes a great increase in secretions, coughing, choking, snot, you get the picture. And true to previous experiences this time is no different other than adding into the mix from the sinus culture that was done last week that he now has MRSA in his sinuses with the same sensitivity as the pustules. Per our visit with Dr Malone (ENT) on June 5 we were to wait until he was junky again and get a culture. From the results we were going to decide how to treat. I haven’t talked to her yet, the immunologist put Alec on cipro for the next 14 days, and Dr DeHaan (primary) has referred Alec on to an infectious disease dr. Currently we are going to see Dr David (pronounced “Da Veed”). If anyone has any information on this dr, please let me know.

Seizures we are back on the increase again, however his topamax level has fallen the past couple of weeks and his Phenobarbital level drop from a 21 to a 12 (15-40) is range. So, I am waiting for a phone call from the neuro, but I suspect Alec to have to have a loading dose and then an increase.

The worst part about this entire scenario is 1) having the baby and Alec still battling MRSA or 2) starting this entire mitochondrial process over again if we have another sick child. At least I would like to say I am smarter for doing it once already!!

Wednesday, June 6, 2007 10:35 PM CDT

First things first I would like to apologize for the delay in updates. I would like to say it is because we were busy, but really I have just been plain lazy!!

As few of you know, we are currently inpatient at Gillette in St Paul. I called up Monday to get Alec in for a video EEG due to seizures being through the roof, being nasty enough that he is screaming, crying, and not sleeping much. After an eventful EEG, it has come to my knowledge that the repetitive arm stiffening that sometimes goes on for hours is NOT seizures. It could possibly be tone issues due to his spasticity (sp?). The other ones however are causing him to wake up from naps and during nighttime sleep. We are on day 8 of no nap (he will sleep 5-15 minutes and then seize) and night 8 tonight of less than 7 hours sleep. Last night it would be a safe assumption to say that he got around 5 hours of sleep total. It possibly would have been more had the nurse not come in to do vitals grrrr.

So the plan for now is to start Alec back on Phenobarbital, the very first seizure med he was ever on!! The funny thing is that Brad and I have talked in the past 3 months or so about calling up to his neuro to put him back on it to see if it would help! He will be getting a loading dose up from pharmacy anytime and he will get a bigger dose at night to hopefully help him sleep. If this doesn’t work we will start him on some other med similar to valium so he can sleep at night. We will go home tomorrow morning if I feel all is okay tonight otherwise it will be Fri or Sat.

Alec overall has been quite well other than the seizures. There has only been a couple of times the past two days with irritability and I am shocked! With the lack of sleep I would think it should be more. We have had a couple of more MRSA outbreaks on his abdomen, but gone for the time being.

Now I will backtrack to the month of May. The first weekend I was fortunate enough to attend an all night scrapbooking workshop. Of course I didn’t stay up all night, but slept a little and got quite a bit done. I hope to squeeze another all nighter before the baby is born to get even more caught up.

The next weekend was Mothers Day and I believe that Turk worked most of that weekend and the weekend after. We have been gone camping memorial weekend and last weekend. Aaron is busy as tball just started. He is excited for summer and we have been trying to spend as much time outside as we can. I will try to report in soon as to what is up. I have been working on this update all day and I need to get to sleep.

Friday, April 27, 2007 1:06 PM CDT

I know, I know! It has been forever and you have all been kept in the dark. Alec has overall been doing very well. Lately we have had some coughing/choking episodes where he has needed to be vented and suctioned.

In the meantime, we had a couple of drs appts. One was with his developmental dr at Sioux Valley. That visit is always pleasant. We are supposed to see him every 6 months, but it has been a year since our last appt. He is having AFO issues, which everyone else seems to want to pass the buck on, but we have gotten some things done since this appt. On a side note I so should have taken Alec up to Gillette to get his AFOs. I just didn’t want to take the time to do it and I am kicking myself for it now. Next time we will do it right. What is best for Alec matters the most.

We also had an appt with the ophthalmologist. No real changes in Alec’s eyes but we are going to get him glasses. As always the main concern is how much vision his brain is processing, but I don’t think the glasses would harm him, so we are going to try it out and see how he does. He and Jen went to pick them up today so I am excited to work with Alec this weekend!

I am still in the never ending battle of insurance companies, medical facilities, and the state. Some days it becomes so overwhelming trying to get everything straightened out!! I have been drug down the past couple of weeks with increase morning sickness or a flu bug. So being tired and sick along with taking care of all of the other tasks that need to accomplish in a day I have been downright exhausted.

I do ask you to pray for a little boy by the name of Emilio (19 mos I believe) who lives in TX. You may know his story from the news. The drs/hospital are fighting his parents to remove him from life support. This little boy has Leigh’s disease, which there is no cure and has a life expectancy of 2, I think. Please pray for little child to no longer suffer and for him to feel God’s presence.

All in all I am just thankful that we have been able to get by without any “emergency” dr appts and have been able to just keep up with the ones we should have been going to anyway. I want to leave you with a speech written by Soeren Palumbo. I received it in a quarterly newsletter I received and found it to be excellent. It is a long read, but worth it.

Soeren Palumbo is a senior honors student at Fremd High School in Wheeling, Illinois, and big brother to Olivia. During Writer's Week (in March 2007), he gave the following speech to a gymnasium full of his high school peers and faculty and received a standing ovation.

"I want to tell you a quick story before I start. I was walking through hallways, not minding my own business, listening to the conversations around me. As I passed the front door on my way to my English classroom, I heard the dialogue between two friends nearby. For reasons of privacy, I would rather not give away their race or gender.
So the one girl leans to the other, pointing to the back of a young man washing the glass panes of the front door, and says, "Oh my gaw! I think it is so cute that our school brings in the black kids from around the district to wash our windows!" The other girl looked up, widened her slanted Asian eyes and called to the window washer, easily loud enough for him to hear, "Hey, Negro! You missed a spot!" The young man did not turn around. The first girl smiled a bland smile that all white girls - hell, all white people - have and walked on. A group of Mexicans stood by and laughed that high pitch laugh that all of them have.

So now it's your turn. What do you think the black window washer did? What would you do in that situation? Do you think he turned and calmly explained the fallacies of racism and showed the girls the error of their way? That's the one thing that makes racism, or any discrimination, less powerful in my mind. No matter how biased or bigoted a comment or action may be, the guy can turn around and explain why racism is wrong and, if worst comes to worst, punch 'em in the face.

Discrimination against those who can defend themselves, obviously, cannot survive. What would be far worse is if we discriminated against those who cannot defend themselves. What then, could be worse than racism?

Look around you and thank God that we don't live in a world that discriminates and despises those who cannot defend themselves. Thank God that every one of us in this room, in this school, hates racism and sexism and by that logic discrimination in general. Thank God that every one in this institution is dedicated to the ideal of mutual respect and love for our fellow human beings. Then pinch yourself for living in a dream. Then pinch the hypocrites sitting next to you. Then pinch the hypocrite that is you.

Pinch yourself once for each time you have looked at one of your fellow human beings with a mental handicap and laughed. Pinch yourself for each and every time you denounced discrimination only to turn and hate those around you without the ability to defend themselves, the only ones around you without the ability to defend themselves. Pinch yourself for each time you have called someone else a "retard."

If you have been wondering about my opening story, I'll tell you that it didn't happen, not as I described it. Can you guess what I changed? No, it wasn't the focused hate on one person, and no it wasn't the slanted Asian eyes or cookie cutter features white people have or that shrill Hispanic hyena laugh (yeah, it hurts when people make assumptions about your person and use them against you doesn't it?).

The girl didn't say "hey Negro." There was no black person.

It was a mentally handicapped boy washing the windows. It was "Hey retard." I removed the word retard. I removed the word that destroys the dignity of our most innocent. I removed the single most hateful word in the entire English language.
I don't understand why we use the word; I don't think I ever will.
In such an era of political correctness, why is it that retard is still ok? Why do we allow it? Why don't we stop using the word? Maybe students can't handle stopping - I hope that offends you students, it was meant to - but I don't think the adults, here can either.

Students, look at your teacher, look at every member of this faculty. I am willing to bet that every one of them would throw a fit if they heard the word faggot or nigger - hell the word Negro - used in their classroom. But how many of them would raise a finger against the word retard? How many of them have? Teachers, feel free to raise your hand or call attention to yourself through some other means if you have. That's what I thought. Clearly, this obviously isn't a problem contained within our age group.

So why am I doing this? Why do I risk being misunderstood and resented by this school's student body and staff? Because I know how much you can learn from people, all people, even - no, not even, especially - the mentally handicapped.

I know this because every morning I wake up and I come downstairs and I sit across from my sister, quietly eating her Cheerio's. And as I sit down she sets her spoon down on the table and she looks at me, her strawberry blonde hair hanging over her freckled face almost completely hides the question mark shaped scar above her ear from her brain surgery two Christmases ago.

She looks at me and she smiles. She has a beautiful smile; it lights up her face. Her two front teeth are faintly stained from the years of intense epilepsy medication but I don't notice that anymore. I lean over to her and say, "Good morning, Olivia." She stares at me for a moment and says quickly, "Good morning, Soeren," and goes back to her Cheerio's.

I sit there for a minute, thinking about what to say. "What are you going to do at school today, Olivia?" She looks up again. "Gonna see Mista Bee!" she replies loudly, hugging herself slightly and looking up. Mr. B. is her gym teacher and perhaps her favorite man outside of our family on the entire planet and Olivia is thoroughly convinced that she will be having gym class every day of the week. I like to view it as wishful thinking.

She finishes her Cheerio's and grabs her favorite blue backpack and waits for her bus driver, Miss Debbie, who, like clockwork, arrives at our house at exactly 7 o'clock each morning. She gives me a quick hug goodbye and runs excitedly to the bus, ecstatic for another day of school.

And I watch the bus disappear around the turn and I can't help but remember the jokes. The short bus. The “retard rocket.” No matter what she does, no matter how much she loves those around her, she will always be the butt of some immature kid's joke. She will always be the butt of some mature kid's joke. She will always be the butt of some "adult's" joke.

By no fault of her own, she will spend her entire life being stared at and judged. Despite the fact that she will never hate, never judge, never make fun of, never hurt, she will never be accepted. That's why I'm doing this. I'm doing this because I don't think you understand how much you hurt others when you hate. And maybe you don't realize that you hate. But that's what it is; your pre-emptive dismissal of them, your dehumanization of them, your mockery of them, it's nothing but another form of hate.

It's more hateful than racism, more hateful than sexism, more hateful than anything. I'm doing this so that each and every one of you, student or teacher, thinks before the next time you use the word "retard," before the next time you shrug off someone else's use of the word "retard". Think of the people you hurt, both the mentally handicapped and those who love them. If you have to, think of my sister. Think about how she can find more happiness in the blowing of a bubble and watching it float away than most of us will in our entire lives. Think about how she will always love everyone unconditionally. Think about how she will never hate. Then think about which one of you is "retarded."

Maybe this has become more of an issue today because society is changing, slowly, to be sure, but changing nonetheless. The mentally handicapped aren't being locked in their family's basement anymore.

The mentally handicapped aren't rotting like criminals in institutions. Our fellow human beings are walking among us, attending school with us, entering the work force with us, asking for nothing but acceptance, giving nothing but love. As we become more accepting and less hateful, more and more handicapped individuals will finally be able to participate in the society that has shunned them for so long. You will see more of them working in places you go, at Dominicks, at Jewel, at Wal-Mart. Someday, I hope more than anything, one of these people that you see will be my sister.

I want to leave you with one last thought. I didn't ask to have a mentally handicapped sister. She didn't choose to be mentally handicapped. But I wouldn't trade it for anything. I have learned infinitely more from her simple words and love than I have from any classroom of "higher education." I only hope that, one day, each of you will open your hearts enough to experience true unconditional love, because that is all any of them want to give. I hope that, someday, someone will love you as much as Olivia loves me. I hope that, someday, you will love somebody as much as I love her. I love you, Olivia.

Soeren Palumbo

Tuesday, April 10, 2007 10:07 AM CDT

Where to begin? I hate it when I go too long between entries because too much blends. It is purely due to being up to my eyeballs in paperwork and phone calls at work and being supremely lazy upon my arrival at home in the evenings. The past few weeks my goals in the evenings have been making supper, eating it, and then plopping down on the couch to watch Wheel of Fortune and then the next best TV show I have been following for that evening. Last night was Dancing with the Stars and then the Bachelor, tonight it is Idol, Dancing with the Stars voting results, and then Law & Order SVU. Let’s just say that I won’t be getting Mother of the Year award anytime soon!!

Thurs March 29, we had Alec’s 2nd IVIG infusion and we starting the subq stuff that day too. It took 5 tries to get an IV placed, with the immunology dr poking him the last two times. Alec screamed when he was digging in his foot trying to get it placed (the drs first poke) so I was quite relieved when we finally got going. We arrived at 10:30 and started the infusion at 12:15! I was really worried about having to do the subq stuff 6x a week, but all in all it has been working quite well. We are giving him 3mls and we don’t have to give it over a period of time, we can just poke him and inject it all. If we choose we can go to twice a week, but we would have to inject a greater volume and drag it out over 20 minutes. At least doing it almost every day it is just a quick poke. Alec doesn’t seem to mind much so that makes things easier also.

It seemed as if things were going so well, it was almost too well! And it was. Last week Wed Jen took Alec into the dr for this rash he had on his abdomen. It was originally diagnosed as a folliculitis, but Dr DeHaan cultered it and Friday we found out that it was MRSA. Not good. I called his immunologist who said not to worry yet. If that is not comforting I don’t know what is. Apparently the susceptibility of Alec’s strain of MRSA was overall great considering it was susceptible to Bactrim which he is now on for 14 days. The Wed he went in Dr DeHaan had made the comment that Alec didn’t sound junky, which had become the norm for him the past few months. I personally feel that it is the IVIG, which is also helping his body metabolize meds better, but I will get to that in a bit. As of the last couple of days, Alec has been getting junky sounding again and his right lung is sounding course. I am borderline freaking about the MRSA becoming a pneumonia so I need to make some phone calls today and decide how long to wait before running him in somewhere. So far no fevers so I am taking that as a great sign.

Back to IVIG. We have been increasing Alec’s topamax for the past few weeks and have been taking him in each week for a bicarb level. It has been hanging out around 21 with each increase, which is GREAT. This past week it was 27. I have not seen it that good in Alec’s whole life on the drug. I am speculating that the IVIG is putting his little body back together and things are just falling into place. Seizures have probably been the best in quite some time and I think that the IVIG is helping everything. I must recommend that every mito child needs to go and see this dr!! I have requested Alec’s Ig levels getting checked before and they have always been normal. Little did I know that with mito there is so much more hidden to look for. We are so fortunate that this dr has seen many mito patients collectively that he knows what he is dealing with. I only wish I would have taken Alec to see him 2 years ago.

We saw a new GI dr last week Friday. Didn’t do much, but we really aren’t having many gi issues lately. We ended up taking him off one of his meds and changing another one around. Time will tell what type of dr he is when times of crisis arise, but I am glad to have another dr locally for less miles on the van. Hopefully it works out well for us.

I have begun my fight with the FL drs/clinic/hospitals. So far it is looking like Turk and I are going to have to pay more in medical bills than the Make A Wish foundation paid for Alec’s entire wish trip. The medical places are saying that it is too much work for them to fill out the paperwork to become a SD State provider and the state is telling me that if they won’t become a provider we are responsible for the bills. GRRR. I just keep praying that something works out.

I pray you all had a blessed Easter and for those of you here in SD can enjoy the snow and rain today!! What happened to Spring??

Wednesday, March 28, 2007 6:03 PM CDT

Things have been going well for Alec so no news is good news!! I almost hate to say it, but Alec has been doing exceptionally well. He is probably doing the best I have seen him in his entire life. I am cautiously optimist, but the fact he is tolerating this seizure med increase and we are now on IVIG therapy this could maybe continue! Praise God for good days because these are what get us through all of the bad!!

Seizures are still there of course, but at least Alec is so content and so happy lately. Tomorrow we head back up to the cities for a quick trip and IVIG infusion. I am hoping that the home IVIG therapy has since been approved so we can try this at home and see how it goes.

We have a few appointments coming up in April. We are seeing a new GI, dentist, developmental dr, and opthamologist. Thankfully these are all in SF so we should be able to take a month off of travel! With the spring weather coming we are all anxious to get outside.

Other than that, not too much to tell lately! Alec had an article run on him today in the Harrisburg paper. See this link to visit:
http://www.thechampiononline.com/apps/pbcs.dll/frontpage

If anyone has an extra copy of The Champion I would greatly appreciate it if we could have it. Just email me.

Have a great day!!

Wednesday, March 21, 2007 10:26 AM CDT

Things have been going okay on the medical front for Alec. We are still messing with his Topamax and have been doing bicarb checks. He acts like he is getting acidic, but then when we have had it checked it has been okay.

Not much has been going on for appointments either, which is nice. Next week we head up to the cities to get another infusion, but we might not be doing the home infusion stuff. I found out when we were up in the cities before that Alec was going to have to get the shots 6 days a week instead of the 2 they were expecting. So either something is screwed up or his immune system is MUCH worse than we thought. The shots give a red, swollen spot on the skin and if we are giving them 6 days out of 7 he is going to be red, swollen, and sore all of the time. YUCK. Not much fun for Alec!

We have been so thankful the past week being able to spend our time at home as a family. Alec also has some exciting news to announce: He is going to be a big brother! Turk and I are expecting Nov 5. We are excited and most definitely praying for a healthy baby.

Thursday, March 15, 2007 8:53 AM CDT

WISH TRIP: ANIMAL KINGDOM

After a hearty breakfast at the gingerbread house, we packed up and headed off to Animal Kingdom for the day. We tried to hit the Nemo show, but I guess it isn’t “officially open” so it shut down in the middle of the show due to some mechanical failure. We were really bummed because the first 15 minutes we saw of the show was awesome!

We started to meander over to the Kilimanjaro Safari ride and on the way we encountered a live grape vine. We were at the far edge of the circle of people surrounding this vine who were videoing and taking pictures. I have no idea how she spotted Alec because he was mostly blocked by people and not even facing her, but low and behold, she starts to move across the circle directly toward Alec. Aaron freaked out and went as far away from her as possible, and Alec was sleeping away which was a bummer because I know he would have enjoyed this attention! So now all eyes are on Alec as she is pointing to him and encompassing herself around him. It was awesome!

The vine pointing at Alec

Alec and the vine

Meeting Baloo

Aaron Playing!

The safari was fun and Alec decided to wake up halfway through the trip!

After the safari we went wandering around the Patagonia trail looking at fish, gorillas, meerkats and other various animals. We then went to Camp Mickey and got to meet Minnie Mouse, Mickey Mouse (who the photopass worker must have screwed up because we don’t have any pictures off! Grr!), and Donald Duck. Donald was by far Alec’s most favorite of the entire trip!

Next we saw the Lion King Show which was a blast and totally entertaining. Then we starting making our way to the Bugs Life show and on the way we say Flik, Lilo & Stitch.

The Bugs Life 3D show was fun. Aaron kept taking off his glasses and Alec’s eyes were so big watching the show! Here is a picture of the boys right before we went in.

That night back at the village Aaron got to participate in the Kids Night and his buddy ended up being a guy by the name of Steve who Aaron met on Monday night at the Village and totally hit it off with. For much of the Kids Night Aaron was not Aaron, but Batman.

Batman & Steve

Monday, March 12, 2007 3:28 PM CDT

We are home!! Yeah! HOME!!! We were discharged from the hospital yesterday and spent the rest of the afternoon and evening unpacking and getting things somewhat settled.

The bacteria that he had was enterobacter and sakazakii. I looked up the enterobacter on the internet and didn't find very good things written about it so I am glad that I didn't know the bacteria until Saturday when Alec was very obviously feeling better. The bacterias are sensitive to oral antibiotics so we didn't have to place another picc line to go home and we are just doing levaquin through the g tube.

Brad and I cannot say thank you enough to all of the prayer warriors out there for Alec. We both thought for sure that this was the end of the road for Alec and that we would be finalizing his funeral plans. God very much wants Alec to still be with us or He would not have placed us where we were at when we where. What a miracle. Thank you God and Thank you Prayer Warriors!!

Friday, March 9, 2007 11:34 AM CST

GOOD NEWS!!! Alec is probably going to be fine and the infectious disease dr speculated that we would be able to come home sometime this weekend.

We still don’t know what gram negative rod bacteria is growing because it is growing so slowly, which is a good thing, probably due to the fact that he has been on so many antibiotics. The ID dr is hoping to know what is up by later this afternoon. Once they find out what bacteria it is it will determine if Alec will be going home on oral antibiotics or IV antibiotics. If it is IV Alec will have to have another picc line placed to go home.

The Dr said that he is sure that the bacteria spread to other places of his body, but that we have been able to kill everything off and in the drs words the germs have gone to “germ heaven”. Thank goodness that we were here and started these antibiotics in time before things got critical. It is because of this that Alec is doing so well!

Alec has been acting very well over the past day. He had the motrin and Tylenol stopped yesterday morning and he hasn’t spiked a temperature above 98.5 and he has not had anymore episodes!! Last night he slept from 8:30 until 7:30 and he fell asleep a little after 10 am this morning. Alec is not like typical people when they are sick and sleep all the time to recover. When Alec is sick it seems as if his body won’t let him sleep.

We are so fortunate and can’t thank each and every one of you enough for the prayers and support during this crisis. We are so blessed.

Thursday, March 8, 2007 12:02 AM CST

Well I will start off with the bad news and end with the better.

Last night was horrible for Alec. Around 6:30 another episode started and it lasted the rest of the night. His heart rate didn’t come back down to close to normal during sleep until early this morning. It was a slow, gradual decline in rate. His fever shot to 104.8 axillary and did not want to drop. Around 8:15 I decided to do an oral suction on Alec because he sounded junky and it is better to do it before he falls asleep so he sleeps better and you don’t have to wake him up. I put a couple of drops of saline up each nostril, was suctioning out his mouth when he cough and blood shot out of his left nare. Alec was bleeding everywhere and choking. I moved into fast action and called the nurse, vented his gtube, and was running suction up at the end of his nose and frantically trying to suction his mouth with was covered in blood all the way into his throat. It was so much blood I can’t even tell you how bad it was. I can’t hardly believe that he didn’t aspirate.

I sat and prayed over Alec and spent a good portion of the night crying. I so don’t want him to die yet, but I feel so selfish praying to God to spare him for my own expense. God only knows how much better off he would be and what a fabulous life in heaven Alec would have, but yet I cling to Alec not wanting to release him. I just need to pray for peace. Alec is God’s child and I know He is in control. It is funny how things change and how I have grieved so much for what we lost in our son after Alec started to get sick. The loss of our dreams of him playing sports, watching his personality grow, seeing the relationship that our boys would have together being so close in age, not being able to see your baby take his first steps, never being able to hug you, never being able to say “I love you”, having a first girlfriend, going to prom, getting married, having his own kids. So much loss at so many levels. I used to beg God to make Alec “better” “healthy” “normal” and now I don’t care about those things. I just beg God to keep him hear in my arms, for me to get up at 2am and fill his feeding bag, spending hours a day doing meds, nebs, vests, therapies, for me to have to miss work to take him to the doctor and check ups with all of his specialists, to be able to take him camping this summer, snuggle in bed, watch Aaron read to him or snuggle with him or protect him or feel his pain for him again. I would do anything for him and I don’t care how much time or work it takes. I have fought for him his entire life and will do so until Alec dies, but yet how much does he want me to fight? How much does he need to suffer? How many days does he need to cry out of pain of the seizures? How fair is it to him knowing the better eternal life that awaits him?

On a good note the attending Dr, who we had last time Alec was hospitalized at Gillette, came in a bit ago and informed us that the culture from the infected line had tested positive for the gram negative rods and that the culture taken from his arm where the peripheral line was place is so far negative for gram negative rods. We are still waiting for results of the initial blood culture to see what sort of bug is growing and I will update when I know more.

Thanks for all of the prayers and support. You all mean the world to our family.

Wednesday, March 7, 2007 5:51 PM CST

We are in the hospital in St Paul at Gillette Children's. Our room # is 651-312-3162. Read rest of entry for details.

Last Thursday we made it in to the clinic for Alec appt before the snowstorm hit and it was decided to stop the IV antiobiotics. We spent the weekend at home snow in, which was nice!!

We came up to the cities on Monday. On the way I called Alec's neuro about his seizures because they were out of control (more than usual!). He was seizing at least every five minutes. So she squeezed him in for an appt on Wed (today). I told her during our phone conversation that he wasn't having any respiratory issues and I so much as hung up the phone with her that Alec decided to choke and puke on his snot and become junky sounding.

Tuesday we went to the infusion clinic for his first IVIG infusion. Twice during the infusion Alec start to have a reaction. During this reaction he would get goosebumps from head to toe, shake, eyes would roll back, moan and groan, curl up, and be quite pale. The second reaction he spiked a 104.6 degree temp. For a kid that usually runs high 96 or low 97 that temp was outrageous! So the clinic did some labs and a blood culture. Alec was fine last night and no issues other than a slight temp off and on.

This morning while Jen and I were getting ready to go Alec had another reaction like he had the day before during the infusion. We gave him motrin and it lasted about a half hour and his temp didn't increase about 100. While we were sitting in the drs office waiting for Alec's neuro to come in I got a call from the Immunologists office that his blood culture had come back with gram negative rods and his line in his neck had to go. Long story short, but everyone is not taking any chances on this infection and we are getting thrown in the hospital because there is a 40 percent chance that he has a blood infection. The drs all agree that he probably does have a blood infection due to the reactions he had been having. A blood infection can be very dangerous and I am not going to beat around the bush, but if Alec becomes septic (basically blood poisoning) he will probably die. So this is very serious and I am glad that the culture was done yesterday and things are progressing quickly in the hospital world, as most of you know, things don't move too fast in here.

Right now Alec's vital signs are stable, but they do have the potential to turn very quickly. We have another line placed in his arm (only two pokes so that was a miracle) and we are getting ready to pull the line in his neck. Blood work was done and blood cultures were drawn out of both lines. If the blood culture out of the new line grows gram negative rods like the line in his neck, it is forsure a blood infection. We won't know this until tomorrow evening around this time. By tomorrow afternoon we should know what sort of bug it is exactly for maybe a different plan of treatment. We are currently doing two different IV antibiotics.

I will keep you all posted when I know sometime.

Monday, February 26, 2007 3:46 PM CST

Where I left off……

Immunologist appt – apparently Alec has some really weird/rare immune issues, but what he has is common to what he has seen in mitochondrial disease patients. All of Alec’s Ig levels are normal (so I am glad that we pursued this workup!!), however he is not producing B antibodies, which are the antibodies that fight off the types of bacteria he has in his sinus. You should have an a to b antibody ratio of 1:16 and Alec’s is 1:1. He also has some leukocyte issues, and is not responding to his immunizations. On just his pneumoccal his body only responded to 2 out of 23 things. There is also some question in his T Cell function, but we are waiting on a t cell receptor test. On a good note the IVIG has been APPROVED!! Right now we are waiting on approval for the home infusion. We are going to go up to the cities next week and get Alec’s first infusion and then go home on the subcutaneous shots. Should the home infusion stuff not be approved yet then we will push the appt back. I cannot wait to get this started.

So we saw the pulmonologist last week and have continued the IV antibiotics for another week. We go in this Thursday to reevaluate again. Alec started running a temp on Wednesday night and has been running temps every day since. Seizures have been TERRIBLE, but that is to be expected. He is currently also on steroids making him more miserable than he already is.

Aaron Funnies –
Alec has had the diarrhea for what seems like forever now. Anyway, Turk always tries to press his luck by changing him on the couch. We always have a sheet or blanket on the couch for accidents, but with the diarrhea changing him on the couch is foolish. Sure enough Alec coughs while there is no diaper underneath him and has a blowout. I got into the shower and left the mess for Turk. While in the shower Aaron comes in and announces “Alec pooped on the couch and it melted through the sheet and on to the couch cushion.”

We were sitting at the table making Valentine’s for school and Aaron says to me “Mom, for presents day do we get presents or give presents?” Me – “What do you mean?” Him – “You know, presents day. We don’t have school because it is presents day” Aaron didn’t think that Presidents day sounded nearly as cool as presents day.

Not too much has been up on our end. I feel frantic trying to get all of the scrapbooks involving Alec caught up. This weekend I almost got his baby book done, so I feel pretty good about that. Other than that I changed poopy diapers and had a crabby kid all weekend.

Hopefully I will update sooner next time. I just haven’t been in the mood. It is hard when all of the stuff that used to help your child doesn’t anymore. Although I love the snow I am ready for the sunshine to help get me out of this funk.

WISH TRIP PART 1: The moment you all have been waiting for!!!

Day One:
Of course as you all probably remember, Alec decided to start to get sick right before we left. I felt in my heart we needed to go and prayed and prayed for God to give me the answer. I was told not once (because I must have been doubting the first time!) but twice that we needed to go on the trip. So we prayed over Alec and then the limo driver knocked on our door. Aaron ran down and gave him a big hug! It was too cute.

We got to the airport and boarded the plane to Minneapolis fine. Once we arrived in the cities, the next hour was a Colorado backflash. There was supposed to be a cart waiting for us simply because we had a backpack, roller bag for Alec, roller bag for Aaron, a luggage bag, a big roller bag filled with medical supplies, a cooler and THE VEST (for those of you that don’t know what the vest is, it is the vibrating vest Alec has and it is NOT a light object) all for carry-ons. The cart was not there, we asked and the gate attendant told us that they had wheelchair assistance there, but they left (apparently when you are the last off of the plane they don’t have the patience to wait). Long story short, we had less than 45 minutes to get from Gate A to Gate G before our flight left. So we are running down the moving walkways pushing Alec, carrying all of our stuff, and making Aaron run with all of his might. Twice on the moving walkways he fell, once when he lost his step at the end of the walkway and the second time he fell and smoked his head on the moving handrail on the walkway and bounced down the side. He is started to cry both times and Turk and I yell at him that he is fine and get moving. I am sure that we were a site in the airport. We make it to the gate just in time to board, without eating lunch because we didn’t have any time for that in our sprint from gate to gate. We get to the door of the plane and Turk lifts Alec out of his chair and starts to bring him on the plane. As he is doing this I stop him because Alec is dripping poop out of his pants all over Turk and the plane floor in first class! So we have to change Alec outside of the plane door where it is like 20 degrees. Alec was stripped down because there was crap from head to toe. The entire plane had to wait to take off because of us, but the flight attendants were great getting us garbage bags, loading our carry-ons, and getting wipes. Once we were finally able to board and get settled in our seats the one attendant asked us if we wanted a drink. I was in the mood for about 6 at that time!!

Pics from the plane

Once we arrived at the airport, we met our greeter, got down to baggage claim where we waited over an hour for our bags. It was ridiculous. We then got our rental van and headed to Give Kids the World (GKTW). Fortunately the supplies I had shipped down were waiting for us and we were able to unload, eat, and get some rest.

DAY TWO –
We decided the night before that I was going to run Alec to ER to get him a steroid shot to give him some relief for the rest of the week. Once there I couldn’t get Alec to wake up and he didn’t until we were back in ER on his 3rd IV poke. Once at the hospital this ER dr tells me that he is going to be admitted and be in the hospital at LEAST 2 days. Me of little faith who trusted God to go on the trip lost it and I spent a good portion of the day bawling in the ER room we waited in for 7 hours before being moved to a room. They did continuous nebs for 7-8 hours. Once up in the “special care” part of the children’s hospital Turk and I demanded that he be taken off of the continuous nebs because his heart rate was 170 and his respiration level was so high. The drs didn’t believe me that once this neb was stop that his respirations would get back to normal. Sure enough, they went from 70-80 to 40 within a half hour.

Turk and Aaron spent the day at GKTW because there wasn’t any reason for Aaron to have to sit at the hospital, so he went on a pony ride, mini-golfed, and played around at the village. GKTW was so AWESOME we can’t mention it enough. They gave Turk and Aaron a ride to the Children’s hospital which was ½ hour away from the village. Turk stayed that night and we convinced the dr to discharge us on Tuesday morning. The dr didn’t want us to go, but we knew that Alec would be okay since he had gotten four or five doses of IV steroids. While at the hospital we brought Alec’s vest up to do his treatments and we couldn’t get the vest to work. After carrying that heavy thing everywhere and now this $16,000 piece of equipment doesn’t work!!!! It ended up being the power cord so we eventually got it to work but it was a struggle.

Side Note: Now we are beginning the fun for billing on this junk. Yuck! Down in FL they claimed that they were going to submit it to the state, but I will believe it when I see it!

Pics from the hospital

Leaving the Hospital

As most of you know Alec, he can change from sick to okay within hours. So once we got back to GKTW, Alec seemed to be in a pretty good mood so we decided to get ready and venture over to Magic Kingdom to catch the fireworks for the evening.

Ready to start my trip!!

Once at Magic Kingdom we just caught the parade, which was AWESOME!! Many of the characters blew Alec kisses, pointed and waved at him or came right up to him.

Aaron playing a game with a talking and moving garbage can.

Alec getting a big hello from Rafiki (sp) from the Lion King.

After the parade we went to grab a bite to eat. While at our table this duck kept coming over begging for food and the gentleman sitting next to us told us to feed it a French fry. So Turk did and it kept wanting more so he was holding up some fries so that I could get a picture with the duck by Alec. Then we stopped and went back to eating. Pretty soon the same duck came back with a friend looking for treats!!

The first Duck

The duck and her friend

We then headed over to a couple of rides and we pleasantly surprised at the first class service. Before we knew it we were escorted over to the exit side and boarded Aladdin’s Magic Carpet ride next! Aaron had fun controlling how high we went. Once off of the ride we saw Aladdin, Jasmine, and the Genie. We went in line to get autographs and meet them and the Disney Worker says “Come with me” and again we were escorted to the front of the line. It was so awesome!! Jasmine gave Alec a kiss on the cheek and he got to wear Jasmine’s kiss for the rest of the day.

Meeting Aladdin, Jasmine & Genie

We also went on a Jungle cruise where Aaron got to be the guest skipper and drive the boat. He thought that was awesome.

Family Picture of us on the Jungle Cruise

Magic Kingdom was just as it sounds, Magical. I felt like I was 8 years old again. The fireworks were the most SPECTACULAR display we have ever seen in our lives. I tried to get pics but they didn’t turn out. We had a wonderful time there so we decided to go back and spend more time there on our last day, which ended up being Sat due to Make a Wish giving us an extra day. What an answered prayer that was!!

Tuesday, February 13, 2007 9:48 PM CST

The appts went well today. We are going to do IVIG therapy for Alec as soon as it is approved by insurance. I will update tomorrow with what the immunologist said.

Gillette squeezed us in and we got Alec's chair adjusted and he fits MUCH better now. We also saw the ENT for the post op. No worries there; his sinus looks like it is healing good and he DID NOT have to be resuscitated (sp) or bagged or had any trouble getting extubated. I don't know what this nurse was thinking that told Turk this, but Alec did JUST FINE.

We are NOT going to do the VNS. Too many things are complicating Alec right now.

Turk and I have a terrible feeling that his body is giving up. He is not fighting this junkiness, cough, and snot. There is not a recovery time like every other before this. We both don't have a good feeling about this and are going to make the time to get out and purchase our cemetary plots. I hate this. I hate mito. I hate that my little boy is slipping away. I don't know what will become of us.

Monday, February 12, 2007 11:30 AM CST

We got out of the hospital yesterday. Some of the nurses were freaking out that Alec was going home with the picc in his neck, thus making me freak out that it is in his jugular.

Things have been going fine. Alec had his first day of preschool today.

We are leaving shortly to head up to the cities for his care conferance with the immunologist and follow up with the ENT.

Stephanie

Friday, February 9, 2007 2:43 PM CST

We are BACK in the hospital, but I will fill you in on what has went on while we have been gone!

We were discharged last Friday, the 2nd, with the game plan of if the cipro didn't help Alec then we would be readmitted, put in a line and do IV antibiotics inpatient for a couple of days to make sure he doesn't have a reaction, and then go home on IV antibiotics.

Yesterday my first baby turned 5 years old!! I can hardly believe it the years have flown by so fast! We celebrated the day by spending the evening at Chuck E Cheese. He was struting his stuff wearing his new cowboy hat and cowboy belt. It was too cute. Maybe someday I will put a picture up but don't hold your breath, I am still trying to get time for the MAW pictures!!

Alec's week wasn't too bad and he is actually better, but not better to how we want him to be. Plus, now his butt, scrotum, and penis are all so red and irritated that it could all be bleeding before too long. He had 5 dirty diapers while we were at the pulmonology appt this morning. Poor baby. Now he has a picc line placed in his neck and the IV antibiotics have been started.

605-328-1210 is anyone needs to get ahold of us.

Stephanie

Friday, February 2, 2007 4:26 PM CST

We are home on Cipro, thanks to Alec removing his own IV. The plan is to use this and if it doesn't help then we will be readmitted for IV antibiotics. The first couple of doses will be given at the hospital and then if needed, resume them at home through our nursing agency.

Thanks for all the prayers!

PS. If you want to read about his neurogeneticist appt read the journal history.

Thursday, February 1, 2007 9:54 PM CST

UPDATE 6:45AM FEB 2
Dr DeHaan was just in and asked if we wanted to go home. YOU BET WE DO! Get us out of here before we catch anything else! He was going to talk to the pulmonologist to see if we could just go home on Cipro for antibiotics. We should know something this am!

So my child that cannot move much at all has decided that he doesn’t need his IV and proceeded to remove it himself by kicking it on the crib railing. That little brat! Doesn’t he know how hard of a stick he is and what he is going to put himself through??? We are not putting another one back in tonight so he can sleep at least, but we will be putting one in tomorrow. It could be interesting since as of yesterday he had 3 available sites left on his body after the St Paul order. In St Paul they even decided to stick his jugular. He is bruised from head to toe!

So the pulmonologist was in tonight and the plan is different IV antibiotics for 2-3 days and then home on Cipro. I was pushing for a picc line and then have our home nurse administer meds, but no such luck! Alec tested positive for psuedomonus (sp) and the staph aurous. The staph was not augmentin resistant, but a point I am going to have to bring up is if he tested positive for it now and has been on the augmentin 3 times since the positive test in Dec if that is really the case.

We are going to start seeing a new GI dr here in SF so I hope that will be able to help Alec out since we haven’t been seeing a specialist for about a yr now. The nutritionist was in today and informed Turk that Alec was in the 90th percentile for H&W. We have our option of going down to 20 cal feeds instead of the 22 cal feeds to get him at the 75th percentile. He must have been off the charts a few months ago because he hasn’t gained any weight since we started him on his diet.

Now, on to the nuerogenticist appt at Mayo a week ago that I haven’t gotten to yet. We got some great news. Alec has two gene mutations in his mtDNA. One mutation is associated with a complex 1 deficiency and the other with complex 5, which would make sense due to Alec being “so severe”. If I understand correctly, complex 1 is responsible for starting to process enzymes (?) that sends it down the chain to complex 5, which is responsible for taking what was processes and turning it into ATP. So Alec is not starting his processes correctly, which in turn causes the rest of the links to not process correctly, and the ending process responsible for the cell’s energy (I think) isn’t doing its job correctly either. The good news is that due to the mutations, it is NOT recessive, meaning Alec’s difficulties are not a combination of mine and Turk’s genes. Instead it is a sporadic mutation or maternally inherited. So for Aaron this is a wonderful thing because he cannot pass this on to his future children. The next step would be to send my blood for testing to see if I have none, one, or both of the same genes mutated as Alec and how mutation they are. This is a $2500 test that insurance probably will not cover. Maybe someday I will start fighting to get it covered, but I see no reason to.

Stay tuned for Disney updates!! Now that it looks like I should have some time on my hands I should be able to get some pics uploaded!

Thursday, February 1, 2007 5:43 PM CST

We have some culture results! I haven't seen the docs yet, but one of the bugs is rocephin resistant! That is good news because we may be able to get Alec better. I will update after they round.

Wednesday, January 31, 2007 4:53 PM CST

We are in the hospital with Alec (605-328-1106 - if you want to call). We had our option today of going home after a decadron shot with orapred and an additional antibiotic on top of the augmentin or be admitted. We chose to come here to hopefully get this figured out once and for all. Alec just seemed to not be able to shake this completely. Currently we are doing IV rocephin and solumedraule (sp) - antibiotics and steriods - along with scheduled nebs. Tonight the pulmonologist should be by to see us.

Tomorrow his cultures from his sinus surgery will be back and I am hoping that those results may start a new plan of action for Alec that will help him. I will not update again tonight unless the pulm dr has been by.

Wednesday, January 31, 2007 7:47 AM CST

Alec got home yesterday from St Paul. Things seemed to go pretty uneventful for Turk except for the 3 MAJOR poop blowouts on the trip home. Needless to say I am very thankful for the towels and chux pads I packed! The only other information that I received about the surgery was that they had to resuscitate him twice when he was coming out. I asked Turk what he meant by that and he didn’t know because he didn’t ask. I am going to have to ask her on our next appt in a couple of weeks. This makes me especially nervous for the VNS surgery. Turk and I discussed it last night and we might not do it.

Last night I feed Alec his 6pm feed and night drip out of the same formula bottle that the hospital had made for Alec. I am pretty positive that it was not right because Alec pretty much cough, retched and puked everything up. Finally at 1:30 I dumped that formula out and ran straight pedialyte. That helped but we are having junky, coughing, and breathing issues so we are running straight into the clinic at 9 and they are going to work us in.

Monday, January 29, 2007 9:10 AM CST

Turk is up with Alec in his room, 7946 at St Paul Children's. Alec is snoozing away. He stretched a bit, but that was it.

UPDATE 2:00PM
ALEC IS OUT OF SURGERY AND IN RECOVERY. Turk has not gotten to see him yet, but surgery went well. The adnoids (sp) weren't removed. Dr Malone, the ENT, said they were very tiny. I will update later when I talk to Turk more and he has seen Alec.

Turk called and Alec is back. He said it took them about 22 sticks to start an IV.

Please keep Alec in prayer. He has sinus surgery that was originally scheduled for 12:15 and I just got a call from St Paul Childrens that they can bump him up and wanted him there earlier. I will keep posting as I know information.

You will also have to check back because I am hoping to get my pictures from MAW trip back today and I have to tell you about our appt last Thurs. We went to Mayo and saw Alec's nuerogeneticist. Lots of interesting info!

Tuesday, January 23, 2007 4:23 PM CST

What can I say? The trip started horribly but ended super duper fantabulous! I will update more about the trip with pictures once I get them back from MAW. I took over 600 so there will be plenty to choose from! I will update each day of our trip with pictures.

I must say THANK YOU, THANK YOU, THANK YOU, for all of those who were praying for us. Sunday morning I don’t think that Turk wanted to go on the trip because Alec started a harsh cough around 2 am. I fervently prayed for God to give me an answer on what we should do and was told twice that we were to go on the trip. I felt at peace and had complete faith that he would be okay, although my faith really believed in God healing him for the week, not the hospital! But His plans are always best. Oh ye of little faith as I spent the day bawling in the ER trying to arrange to get flights home on Thurs or Fri when we got discharged. The hospital was very short lived compared to what we were told on Monday that he would be in the hospital AT LEAST 2 days. And I spoke with MAW today and they stated that it was incredibly easy to add the extra day and everything fell into place. Another MIRACLE again! How grateful I am for that extra day and for Alec’s short stay. Words cannot come close to the feelings I have of this trip. Brad and I have never gone on a trip where we both didn’t want to leave. We could have stayed there forever I think! Disney was awesome, Give Kids the World was awesome, everything was awesome. Aaron’s favorite part of the trip was “everything”! And it was. We are so blessed.

Yesterday we went up to the cities to visit the immunologist that I have been trying to see since July. How I am SO THANKFUL that we went. So far this month Alec has been on Augmentin for 7 days, Zithromax for 5, and had a Rocephin shot in the hospital on Monday. While Alec is doing much better that when we went to the hospital on Monday the 15th, he is still not “well”. We haven’t been able to shake this constant upper respiratory stuff. The nurse practitioner that we saw took one look at him and said he is horrible! Jen and I were like, he is actually pretty good! So we started on heavy duty bactrim and added lactobacillus and acidophilus (sp??) in his meds. Labs are going to be drawn during his sinus surgery and cultures are going to be taken. Our follow up in the 13th of Feb and we will get a plan in place then, either constant low dose antibiotics or subcutaneous IVIG shots. I am excited and anxious hoping that the sinus surgery and immune therapy combination will help him out.

Wednesday, January 17, 2007 6:45 PM CST

Grandma Kim again.......Steph just called and they are having an AWESOME time!!! Alec and Aaron are having so much fun and Alec is getting SO much special attention from all of the Disney characters!! Steph will update with pictures and details next week.
Thanks for the all of your continued prayers!!! God is good!!

Tuesday, January 16, 2007 11:59 AM CST

This is Grandma Kim updating....God gave us our miracle!!! Alec is out of the hospital and the Make-a-Wish foundation has graciously given them an extra day!!! God IS good!!
Thank you all for your prayers and please pray for Alec's continued healing and for safety, health and FUN for this awesome family I couldn't love more!! Praise the Lord!!

Monday, January 15, 2007 8:00 PM CST

The wish trip has not gone very well. We brought Alec to the ER and he was admitted to the hospital. We're not sure how long he will have to stay yet. I have no computer access so my mom is typing this for me. Pray for us.

Saturday, January 13, 2007 7:10 PM CST

Things have been touch and go, but we are GOING TO DISNEY!

Yesterday we watched Alec waiting and debating. He sounded pretty good, much better from Thursday, but still a little junky. We are so fearful of another Colorado nightmare! Turk and I decided this morning around 10 to go.

We worry that if we wait and reschedule that he might be sicker the next time or what happens if he gets sick and dies and we don't get to go at all? I have faith this trip will be okay. I am praying the angels around us!

This limo is coming for us at 8:45. Right now the boys and I are watching the Disney DVD that Make A Wish gave us last weekend. Brad and I thought that we had an itinerary planned, but as I am watching this there is so much more that I want to do!!!

I will update if/when I can on the trip otherwise I will put together something when I get back.

THURSDAY, JANUARY 11, 2007 16:03PM CST

Well it was a busy day. I first met with Make A Wish to get our memory card for our camera and visited with them if we have to cancel our trip. Fortunately, if that does happen it can be rescheduled. We spent the rest of the morning and afternoon in the drs office. We ended up giving Alec a decadron shot (steroid) and changing his antiobiotics. Hopefully this does the trick for him and we are still able to go. We will just be waiting to see what is going to happen. Please pray that Alec can recover from this quickly. His sats haven't been very good at times. If you don't want to be grossed out, don't read any further - Alec's stomach has been so full of snot that when he is choking and needs to be vented the snot is bubbling in the gtube. I even had to unplug his mickey extension to get some snot out. It was so thick that I had a hard time getting it out of the extension. Totally gross.

THURSDAY, JANUARY 11, 2007 7:28AM CST
Please keep Alec in your thoughts and prayers today. I am waiting from a call back from his drs nurse to get him into the clinic. His sats were low all night, he is junky, his lungs are course, and he has been on antibiotics for the past week. I will update once we find something out.

WEDNESDAY JANUARY 10, 2007

Sunday afternoon I ventured up to the cities for a quick overnight trip to get Alec’s new wheelchair. I spent the evening going to sled hockey with my friends to watch Alec’s buddies play. Two of my friends organized this sled hockey league for disabled children and adults. It was SO AWESOME! I want to get something like this going in SF but with the lack of ice available already, we wouldn’t have time. So anybody from SF reading this vote yes on the next events center!!

Alec loved watching everything. I was worried earlier because he didn’t take the nap the entire day and was expecting him to be fussy. Again he proved to me that hockey IS his favorite sport. His eyes were purple from being so tired but he refused to give in and miss something at the hockey rink! Then after the kids were done playing my friend took Alec out on the ice in a sled and he LOVED it. He was smiling so big that you could see all of his teeth. It was so cool and makes me wish he could be involved in something like this all the more. Maybe in a couple of years SF will have the capabilities for me to get a sled hockey league going here. Afterwards we went out to eat and Alec finally cashed it in a fell asleep, drug free too!

It was a LONG day at Gillette but his new wheels are great! After I got out of the appt at 4:30 the van was dead because I had forgotten to shut off the electric cooler (I went out to the van to shut it off at noon, but never checked the van). To make a long story short I ended up getting jumped by a family that was from Sioux Falls who were at Gillette with their daughter. Of all things! It was a huge help/relief to me, especially since my cell phone was dead. Since I took off from St Paul so late I made a side stop in Belle Plaine and spent the night with friends. Thankfully I did because there were some treacherous roads on the way home. What should have taken me a max of 3 hours ended up taking me over 4 with the wind and ice.

I will say that I did get a pleasant surprise when I read the paper yesterday. A group in Sioux Falls is raising funds to create a handicap accessible baseball field. Once that is complete they are going to be starting Miracle Field leagues. I am so excited for this.

PS. Thanks to everyone for the info regarding our trip! I haven't had time to respond to emails so I apologize, but thanks all for everything!!

Thursday, January 4, 2007 2:37 PM CST

Our wish trip is fast approaching! We are scheduled to fly out of SF on Sunday, January 14 and I am getting more excited the closer it gets! I have been busy trying to get everything ready and making lists and trying to pack as light as possible. We are planning on drawing up all of Alec’s meds for the entire week instead of packing syringes. I wonder if the airport security people will FREAK OUT from the drugs we are carrying! I am running into a problem with transporting fridge stuff. We are going to have to carry on the suction machine, a cooler, plus a bag of medical stuff – feeding pump, bags, extra syringes, meds, bolus syringes, suction catheters, etc, etc, etc. – and this is all just for Alec! Fortunately GKTW has a washer and dryer right in our villa so we should be able to pack light on clothes.

Aaron decided last weekend that he would rather stay up late and play with Alec’s nurse’s little boy so we skipped out on the wrestling meet. Due to lack of sleep Aaron would have been a mess. Our next meet we head off to is next Friday Jan 12 at West Central. This will be the first tournament where Aaron will be able to wear his singlet. I have still not gotten the pictures from my mom, but I will put them up when I do.

I took Alec to see Dr DeHaan today. Just as I suspected, sinus stuff starting to migrate down into his lungs because they have started to sound not up to snuff. We are on the augmentin again (gotta love that diarrhea and stomach cramping). Fortunately, at my request, we are only going to be on it for 7 days while taking flagyl for c-diff the entire time and for a week afterwards. So the diarrhea will be gone before we leave on our trip, thank goodness.

Not too much else is going on. We are enjoying our relaxing evenings at home playing and watching bowl games. Although I am almost being slug like. Last Sat I didn’t get out of my pajamas all day and at home I feel like I should be doing something and every night I think about getting my scrapbook stuff out, but I am too lazy to pull it off the shelf so I have been melting into the couch or bed once the boys are in bed.

This coming Monday is a big day for Alec as we get his NEW WHEELCHAIR! I am so excited to have it. It is like Christmas all over again!

I would like to ask for prayers for our mito friends as in the month of December we had 4 friends go to heaven, Morgan M, Morgan R, Lance, and Kyle. I am sure that their families are having difficult days so please say a prayer for them right now.

Friday, December 29, 2006 2:46 PM CST

I am hoping that we are away from the flu bug as nobody else in our household has gotten sick. Alec seems to be a little more snotty than usual and it seems to be increasing slightly. I am sure that this is our next round of sinus stuff. I am going to get him into the dr next week and get him checked over, especially since the wish trip is so close! We are getting so excited to go and Aaron is excited to ride an "Aaron"plane as he used to call them.

Seizures seem to be worsening ever so slightly too. Not sure what is up with that. I should probably call his neuro. I was hoping to not have to make any changes until after the VNS, but since that is a little ways off yet, we will have to see. Sinus surgery is scheduled for Jan 29 and VNS for March 12.

Aaron wrestled in his first ever wrestling meet last night. Turk and I were so proud of him! He got pinned in all 3 of the matches that he wrestled, but he had fun and learned a lot. We are off and at it again tomorrow to Rock Valley for another tournement. Aaron will just be excited because all place finishers recieve trophies.

Sunday we are planning on going to a hotel to swim and have fun with friends for new years.

Not too much else to report. May you all have a blessed day!

Stephanie

Tuesday, December 26, 2006 4:56 PM CST

Flu, flu go away don’t come back another day……….
A little girl at Aaron’s daycare puked on Wednesday. Aaron was Star of the week at school on Friday. Turk and I left his classroom around 9:50 and I got a phone call 20 minutes later that he puked. Kudos to Aaron though, he made the toilet. I congratulated him and told him that if he made the toilet every time he puked that would be AWESOME! Thankfully, it seemed very short lived. It was the only time he threw up, but the nausea seemed to last a while. So far none of the rest of us have picked it up.

Last week was spent frantically trying to get everything ready for Christmas. Aaron was Joseph in his preschool Christmas program on Wednesday. He was so cute (of course I am biased there!).

Friday night I spent talking to drs. Finally got a call back from Mayo. The dr was waiting for a call back from the muscle lab because due to Shoffner’s report not enough muscle was sent down and the tests came out inconclusive (normally 200 grams – I think grams – is sent for testing and 282 grams of muscle from Alec was sent. The dr was waiting for a call back because we specifically stated before surgery that we wanted extra muscle taken from the screw up last time). However, there seems to be some confusion between what the labs state and what the reports states. I am waiting to see the paperwork, but it appears as though Alec is operating low on Complexes I, III and IV. Mayo actually stained skin for I and IV and got evidence that he has those, but no muscle biopsy report that states it, so no definitive diagnosis. But Dr Renaud stated in our conversation that there was more than enough evidence to indicate mito. Dr Renaud was supposed to have received Alec’s mito bloodwork from Baylor, but Gillette either never sent it or Mayo lost it so I need to get that sent to her. If you remember, Alec had one gene mutation and 20 or so polymorphisms. Dr Renaud is anxious to receive that paperwork. We see her on the 25th of Jan. We also talked about Alec’s CoQ10. His level was 415 and Dr Renaud said that she wants mito patients at 2x the normal limit. We are shooting at getting Alec’s levels to 2000-3000. Apparently CoQ10 comes in a pill form now? If you know where to get it please email me!

I spoke with the ENT about the surgery and we need to have the sinus surgery done before the VNS due to infection reasons. TOTAL BUMMER! But we can have the VNS surgery done 4 weeks after the sinus surgery is done. I am going to try to get that scheduled this week and it will take place at St Paul or Minneapolis Children’s. Once the sinus surgery is scheduled I will get the VNS scheduled. I also talked to the nuerosurgeon’s nurse and Alec tested positive for staph orius(sp?) so we need to treat him for that before VNS surgery. To do that you just apply a cream to his nares and gtube site for 3 days before.

Christmas was fabulous at our house! We went to my parents on Sat. While there Aaron and Alec were sitting on the couch with me and my mom. Aaron was playing with a gun and he dropped it and it hit Alec on the head. (It was a wooden toy shotgun). Alec started bawling and then Aaron started bawling because he felt TERRIBLE he had hurt his brother. He came rushing to Alec hugging him and apologizing.

Sunday was church and going to both of my Grandparents’ houses and yesterday we opened our gifts at home and went to Turk’s parents house.

We got Aaron a chaps set that he hasn’t taken off yet except to sleep and Alec’s big gift from us was a hammock chair and my parents bought him a frame for his birthday and Christmas. I am waiting to get the frame up until the tree is down, but I will post a pic when I do.

I also found out last week that our wish to Give Kids the World was APPROVED!! Yeah!!!! We are scheduled to fly out of SF on the 14th. We are so excited and it will be here before you know it!

I have got to get a scrapbooking weekend set. I am falling further and further behind!! And then when we get back from Disney I want to do a Wish Trip scrapbook!

We pray you all had a wonderful CHRISTmas season!

Tuesday December 19

I called the neurogeneticist at Mayo and Alec's muscle biopsy results are in. Now I am just waiting for her phone call......Will Update when I know!

MONDAY DECEMBER 18
I have one night of class left for the semester and I can’t wait to be done!!

Since the 6th we have been busy, busy, busy. Friday the 8th I took the boys to see Santa at the mall (as you can see from the above pic). Aaron told me “I like Santa. He’s a good guy. He brings me toys.”

Saturday the 9th was spent for me working on schoolwork all day while the boys were gone to my brother’s wrestling meet. We went out in the evening looking at all of the Christmas lights in SF.

Until the 14th of December, I was busy studying for my final, getting things ready for Christmas, and ready for my cousin’s wedding. Thurs Aaron, Alec, myself, and my Grandma took off for Des Moines for the wedding. I couldn’t have asked for a better trip down with the boys. I didn’t use the DVD until the last little bit as a treat for being so good.

Friday was spent getting everything ready, with the exception of one small shopping trip to Borders and a yarn store! Aaron was ringbearer for the wedding and I was nervous as to how he was going to do, but he was fabulous and the life of the party. I will try to post some pics my mom took.

The ride home on Sat was just as good as the ride down which was awesome. The boys and I spent some quality time together while Brad went and played poker. Last night Turk and Aaron went hunting with my dad. I was nervous as to how Aaron was going to do sitting, but was fine and just a little bored.

All and all that has pretty much what has been going on. Alec overall seems to be doing ok. Both boys have this cough that has been hanging on ever since they were sick. Please pray for us to have a healthy Christmas and for no flu bug to hit our house!! As with all important dates, this time of year is always a bit bittersweet. You can never lose the thought that this might be the last one.

Lastly, please pray for the Reynolds family as sweet Morgan passed away on Saturday (visit/morganreynolds).

Stephanie

Wednesday, December 6, 2006 12:29 AM CST

Friday night Alec decided to seize out. We had gone to the dr that day and picked up some cough medicine with codeine in it. Alec received his only dose at 2pm, fell asleep during his vest treatment at 4:15 and slept until 6 am the next morning. My brother was over and we were playing cribbage and I wasn’t really checking in on Alec too much because I had the sat monitor running.

Turns out I am pretty sure that Alec was seizing every 1-5 minutes for 4-5 hours straight. Brad thinks he seized like that all night long. Every time he seized his heartrate would go up 20 bpm and his sats would go down 5 percent. Alec should have gotten the diastat or we should have run him into ER, but both Turk and I knew that he would be fine in the am. Plus with the diastat, he would have had the potential of severe respiratory distress because that is what happened last time he got it when he was sick. Saturday morning Alec was fine.

The past two nights he has slept like a rock and he has been in a great mood (now that we are off of the steroids!!).

Monday afternoon we headed up to the cities. Aaron stayed home with my brother Ben and that was a huge treat for him! Tuesday was a big day of appts.

First, with the neurosurgeon. Nothing unexpected there. We will be getting a call about a surgery date. Right now we are looking at the first week of February. Probably a 3 day stay or so but I will be planning on 4. He will have two incisions, one on the neck and one near the right armpit on his upper torso. They are extremely cautious with infection of this and it occurs in 1 percent. Alec will actually have IV vancomyecin infused for an hour before the procedure even begins. As always I was impressed with Gillette and this neurosurgeon.

Second, the ENT. Alec has to have sinus surgery on his right sinus because it is hypoplastic (small sinus). From what I understand it is a very painless and minimal procedure that will require 2 days inpatient. This cannot be done at the same time as the VNS because it is a “dirty” procedure because all of the crap that has been sitting in this little sinus needs to be suctioned out. This surgery will be done at either St Paul or Mlps Childrens. The ENT drs surgery days are MWF so I will try to see if we can get this schedule on a Fri before a weekend she is on call so that we don’t have to miss much work. This will be scheduled after the dr receives the CT scan done at St Mary’s in Rochester last Oct (05) and will take place in April or May.

Friday, December 1, 2006 2:17 PM CST

Alec decided to make a liar out of me. We took him in to see Dr DeHaan and once we are back in the room he acts like he it totally fine!

Minimal coughing, eyes wide open (we haven't seen that since Sat!) looking around, not too wheezy.

Last night his sats were 94-96, the night before 97, so things aren't too terrible yet, but enough to keep watching it, especially since he has been total blah. He hasn't even had enough energy to be spastic, that was, until we got into the room at the drs office!

Alec just must have wanted to see Dr DeHaan again! Nothing changed other than we got some cough medicine with codeine. Hopefully now Alec can get some sleep without hacking, then seizing and waking up.

May you all enjoy your weekend!!!

Friday, December 1, 2006 10:15 AM CST

Well, I believe that the hospital in in our near future. We are going to the dr today at 10:45 and I will keep you updated.

Stephanie

Tuesday, November 28, 2006 2:15 PM CST

Well no holiday would be complete without sickness! I took Alec in to see his Dr on Wednesday because I could tell that he was getting something. We tried a different oral antibiotic that we have used once before since he was just off of the augmentin! Overall he hasn’t been too bad until Sunday. Of course the fact that we were running everywhere for Thanksgiving probably didn’t help matters.

Saturday night he was up coughing, congested, running a fever, etc. Alec spent the day Sunday resting at home and slept well on Sunday night. Now last night he was up ALL NIGHT LONG! I heard him in bed trying to get our attention around 1am and he didn’t go back to sleep which made for a long night for everyone in our house. Now the stinker is sleeping sound in our bed at home. He went down a little after noon and the nurse has instructions not to let him sleep all day! I do not want another night like last night!

I am in the process of updating the webpage graphics and photos, so you will have to check back. It is very much past due!

We are getting ready for Christmas at our house. Turk put up the lights on the house and Aaron and I put together our outside Christmas trees on Sat. We are still not up and running due to the ice storm we had on Sunday and our lack of extension cords! Sunday Turk put the tree up while we were in church and I put the lights on in the afternoon while Turk and Aaron were hunting. Last night we had lots of fun pulling out our Christmas ornaments and decorating the tree. Alec has been enthralled with the lights and grunts and whines if you get in his view of the lights.

May you all have a blessed day!

Brad, Stephanie and the A-Team

Tuesday, November 21, 2006 4:18 PM CST

I am either going to have to learn how to function on less sleep or they has to be a way to fit more than 24 hours in a day!!

We want to extend our sympathies to Mark and Penny as baby Ike flew to heaven Monday the 13th. They have set up a CB site so if you are interested send me an email.

Last Wed we had Alec’s IFSP meeting. We have decided to send Alec 2 days to Harrisburg and 2 days to CCHS. All of the days will be mornings only. I don’t want him to get too burnt out, but at Harrisburg he is going to get PT and OT and at CCHS he is going to get his pool and speech. He is going to be a busy boy!!

Alec has been doing awesome as far as his head control and walking with assistance. We are in the process of trialing a few different gait trainers. I would like to get one at home for a while because he will walk much better for us than he will for his therapists!

Alec has not really been himself the last couple of days and I think that a pneumonia is brewing. This especially scares me because he just got done with 10 days of augmentin. A huge fear of mine has always been what happens when he doesn’t respond to the antibiotics? What next? Are we going to have to look at getting a port-a-cath placed for iv stuff? I can’t wait to see the immunologist in the cities in Jan. We have 2 months to wait and he has been on antibiotics every month this year it seems!

We are still waiting for results of the muscle biopsy, but I will be shocked if we find out yet this year. Thankfully, I haven’t been dwelling on it much and today is the first day I have thought about it in quite some time.

I had an emotional breakdown in my psych class last week. During our break we were all talking with our Prof and I asked him about grief counseling for Aaron. It is quite a burden for my 4 year old to carry around the stuff he does about Alec dying and going to heaven. Comments from Aaron will pop up out of the blue about what Alec will do in heaven and how Alec will be the first one to see him in heaven and how happy Aaron will be when he sees him, how Alec can then run and play, etc. By the end of the conversation with my psych Prof I was crying of course! How do you help your child grieve when you are grieving yourself? Some days it is so hard, especially the days when Alec suffers so much. On the bad days I just wish he wasn’t here so he didn’t have to suffer any more and on the good days I am so selfish I never want him to leave. I don’t know how we are going to do it when he isn’t here. I don’t know what my life will become.

I have always envisioned us with more than one child, our boys playing sports together, growing up together, and it is a dream lost. I guess God’s plan isn’t always what you envision, but it still doesn’t alleviate the pain.

Sunday, November 12, 2006 12:09 AM CST

Baby Ike is not doing well and our pastor and his wife were called up to the hospital immediately after church today. Pray for Ike and for God to surround this child with protection.

Thursday, November 9, 2006 4:48 PM CST

UPDATE SATURDAY MORNING:
Penny had the babies last night. I am posting the email I received. I can't get the email to send out for whatever reason.

UPDATE: Amy just called and all four babies were born. Around 5:30 or 6:00 Penny delivered vaginally Baby A and then they put Penny out and took the other three by C-section. Penny is doing well and very anxious to see her babies! Here are the names:

Baby A is a girl: Veda Faith – one pound & 10 ounces
Baby B is a boy: Xander Mack – one pound & 8 ounces
Baby C is a girl: Malison Grace – one pound & 7 ounces
Baby D is a boy: Ike Quentin – one pound & 8 ounces

Amy and Mitch have seen the babies and their color is good just very tiny. The doctors say that they are “HOPEFUL”!!! Mark has been with all the babies and was recently reunited with Penny to update her on things. Amy said that in a few hours Penny, Mark and their families are going to go see them. They need our prayers now more than ever!!! Please pray for Amy and the rest of their family also, she is so very worried!!

I am so excited because I get to go scrapbooking tomorrow night! I can’t wait. Maybe I will finally be able to get Aaron’s baby book done and start Alec’s!

Alec has been great the last couple of days. Yesterday was his first day of pool therapy since the parasite and he did AWESOME!! He was so attentive and so loose. It was nice to see. He was full of smiles too. Last night Make-a-Wish came out to our house. WOW! What an awesome organization. We are hoping to get a wish approved to take our family to Give Kids the World. Alec was up until 9:45pm and happy the entire time. In fact after the MAW crew left Alec actually took 5 consecutive steps with ease. Of course I was holding him up, but he lifted his legs all on his own! It was so neat to see and it was probably the best night he has had in the past 18 months. I love seeing his true self shine through.

We have been having more of the bigger seizures lately. I am not sure what is up with that. Have I ever said how much I HATE seizures?

Found out today that the people who manufacture Alec’s mattress pad cover are sending someone out to clean Alec’s mattress and if it can’t be cleaned it will be replaced. Alec’s med port was open one night and the entire 8 hours of night feed went everywhere a few weeks ago.

Alec’s new wheelchair was ordered yesterday and we will be getting it on Jan 8.

I have an urgent prayer request for a gal I go to church with, Penny. She is pregnant with quads (4 BABIES) and around 24 weeks. She is dialated to 5cm and they may have to deliver the babies. Please pray for the babies to stay in the womb. Every day counts at this point in time. I will keep you all posted but keep the prayers coming for her and the babies.

Also, please pray for my grandma Edna as Saturday would have been my grandpa’s 80th birthday.

Stephanie

Monday, November 6, 2006 8:55 PM CST

Halloween was a fun night for the boys. Alec was able to go out to a few houses and then spent the rest of the night at home with Auntie Diane. Aaron had a great time but pooped out by the end. He asked when we could go home!

Diane was able to come over on Wed night and watch the boys while Brad and I went to my brother Caleb’s playoff football game. The boys were spoiled rotten of course while Turk and I froze our butts off. The Wildcats won and are actually playing as I speak.

Let’s see…..what else went on this week. Thurs night I had class, Friday night the neighbors kids stayed overnight. Turk worked all weekend.

Saturday night I had to take Alec into the ER because his surgical incision from the muscle biopsy was infected. Talk about disgusting sitting in a packed ER full of sick people.

Sunday afternoon while Aaron was napping he puked everywhere. GROSS! I knew that it might be coming as it was circulating at daycare. He stayed home from preschool and daycare today and fortunately the flu seemed to be short lived as he is a bundle of energy tonight. Hopefully none of the rest of us catches this illness.

Alec has been having some not to bad days, but crabby evenings. Tonight was by far the worst night in a while. He screamed for two hours non stop, which he hasn’t done in quite some time. Even with neurontin and melatonin. Seizures seem to be worse lately. Maybe 75/day?

We have lots of upcoming appointments. We need to get into the dr and get our flu shots. Alec is set up to get the RSV shots and the pneumonia shot. Next week we take his kid kart and stander in to both get adjusted and get his head switches put on them. We see the neurosurgeon at Gillette at the beginning of Dec and I am going to try to get Alec in to see the ENT around the same time. We see the immunologist on Jan 23rd. We get the new wheelchair Jan 3rd.

I have been busy trying to get things done for school. I had a test last Thurs. I have a big presentation due for my wellness class. My cousin has his rehearsal for his wedding the night of my psych final, so I need to make arrangements to take it early. And the holiday hubbub is beginning too!

May you all have a great night!!

Monday, October 30, 2006 4:06 PM CST

Back to last week. Our appt with the neuro at Mayo went fine. We visited about what has been going on with Alec since Jan and what skills he can/cannot do. She told us to expect at least 6 weeks for results. I am not expecting them until after the holidays.

Surgery went fine for Alec. He woke up happy as can be. As we were waiting to leave he kept lifting his left leg. Turns out the iv blew and the fluid was being pumped into the tissue. His foot was purple and swollen and the skin on his calf was so tight you wouldn’t believe. I got a nurse to yank it out and she hollered in quick for anesthesiology. Thankfully, there was a pulse that they found with a Doppler. It took almost a day though for things to go back to normal. Once we got out into the parking ramp after everything the van wouldn’t start. 1 ½ hours later we finally found someone in MN with jumper cables. Turns out that the battery cable was just lying on the post. It was probably never reconnected after we had the other work done. Thankfully we didn’t have problems earlier.

We made it home fine and had a fairly uneventful weekend. On Sat night Turk and I went to a Halloween party at his cousin’s house. My team won the treasure hunt game we did, but I am still sore from all of the running. Maybe I should get into better shape!

Last night we carved pumpkins and the boys are all set for Halloween. Alec is a scarecrow and Aaron is a cowboy on a horse. I am hoping that the wind is not blowing 50 miles an hour like it is today.

Quick funny on Aaron: I was telling him last week that he was going to have a pajama party at school this week so he would get to wear his pajamas all day. His response “How can that possibly be?”

Thursday, October 26, 2006 9:22 AM CDT

As some of you know, my grandpa passed away last Saturday morning. We have been very busy this past week getting together with family. Please pray for my Grandma Edna as the next weeks will be difficult for her as the family returns home.

Aaron had a breakdown at the private family viewing on Monday afternoon. It was his first funeral that he has attending and the first time that he can visually put together the things we have talked about with Alec.

Today we are in Rochester. I am in the waiting room now with Alec waiting for him to go into surgery. We had appts yesterday and he is getting a muscle biopsy done today. This biopsy is going to be frozen and sent to Dr Shoffner in Atlanta. Hopefully we will get some difinitive (sp?) results.

I will update later about Alec's surgery. I will have my mom write a blub in the guestbook if I am not able to get on a computer.

Pray for Alec and for us. I am already a nervous wreck and have diarrhea.

Stephanie

Thursday, October 19, 2006 3:43 PM CDT

UPDATE WRITTEN 10-12-06 BUT NEVER POSTED!
I am so ready for Jen (and everyone else in our house) to be back to healthy and a normal routine back. Jen found out that she has e coeli. I have found the source of our diarrhea problem. Parasite from the pool at CCHS. Alec’s therapist was the only person to get sick from it, besides Turk, Alec and I! No treating it as it just needs to run its course. Lovely thought.

Alec has been having some pretty good days overall. More often than not he has been napping and when he does get crabby it is in the evening. We try to let him go as long as we can before giving his “good night” meds. We have been giving them anywhere from 6-8:30. Yesterday he decided to wake us all up at 5:30 crying and crying but that was unusual.

The past couple of weeks have been crazy. I haven’t had time to get any “extras” done like updating this website, returning emails, etc! The lack of nursing continues to be a struggle. The past two weeks my grandpa has been in the hospital. Last Thurs, palliative care got involved and Grandpa was moved to hospice care on Friday. So my time has been divided between taking care of Alec, school, work, and hospital.

Aaron’s stolen towel from the first night of swimming lessons was found on Monday in the same spot it was taken from. Speaking of swimming, the same night the towel was stolen, Turk and Aaron were driving out of the parking lot and a couple of girls honked, smiled and waved at the truck.
A: Why were those girls honking and looking at us?
T: They must have thought we were cute (Brad’s big ego booster of the day)
A: We are NOT cute, are we Dad.

HAHA! I am sure that the event made Turk’s day!

UPDATE 10-18-06

Last weekend was spent going to my brother’s football game, attending a baptism, church, and going to the apple orchard. Alec has been doing pretty well. If he gets crabby it has been in the late afternoon, early evening. He has been very attentive.

Jen started back on Monday and I feel like our family is finally all back together! Alec has been a spoiled child though. We have found out that he will not take a nap in his bed. He keeps looking over to Aaron’s side of the bed, but if Alec is put in our bed he will go to sleep. Therapies have been great overall. We are probably going to be sending Alec to CCHS and to Harrisburg for school. All of the finalization of that will take place within the next month. I need to make some phone calls in my spare time (haha).

Not too much else to report. We have appts next week with immunology, ENT, neurosurgeon, neurogeneticist, surgeon, and surgery for the muscle biopsy. Should something happen with my grandpa things will be rescheduled of course.

We needed to bring the van in and get the rackin pinion replaced. Fortunately the dealership cut the bill in half for us, but still not cheap! I am going to have to pray over it! We need it to last us 200,000 plus.

One last thing, I just found out that Alec was approved for a make a wish! Yeah!

Monday, October 2, 2006 3:54 PM CDT

This week has been a bit stressful with not having nurse cares. Jen is out of the hospital but the earliest that she can start working again is the middle of October. Please continue to pray for quick recovery for her.

Monday night I was pleasantly surprised at swimming lessons. When I was waiting for Aaron a Dad of another kid in his class commented to me on what a great job I do with Alec. He asked me if he had a mickey so he must be familiar. He told me that I have much patience and our work must never be done. It was nice that somebody actually talked to me about Alec instead of turning the other way or telling there kids to be quiet when they are asking their parents questions.

Alec still continued to be uncomfortable for most of the week. I finally saw an improvement on Thursday and we have continued to have some excellent days. A few vomiting/choking episodes had to be thrown in there, but overall things have been great (knock on wood). Alec has been napping for at least a couple of hours each day and sleep does him a world of good.

The weekend was good other than a bout of diarrhea that hit our house on Friday! It is possible that we have c-diff so that will be determined this week.

Wednesday of last week I forgot to pick up Aaron at preschool. He was done at 11:30 and I didn’t even remember until 12:20. I got there at twenty to one. All was well, as he was in extended care. All the rest of the kids were all eating their lunch, Aaron didn’t have any because he doesn’t go to extended care (you bring your own). Poor kid. I felt horrible and spent the afternoon near vomiting and with diarrhea. That night I asked him what he was thinking/feeling when they were taking him to extended care “I just prayed that you would come and get me.” Guilt, Guilt! The last thing he needs in his life if for me to be unreliable for him.

The rest of the week has been pretty much a blur. I just keep telling myself “Just make it to December, just make it to December!”

Sunday, September 24, 2006 9:50 PM CDT

This update is long due, but after reading you will know why it has taken me so long to update!

Last weekend was spent low key since Alec had pneumonia. The diarrhea from the augmentin started on Sat and we have been battling it ever since. Now we have major c-diff issues and Alec is awful. It started once we increased the Keppra and has not been improving. He is pretty good during the day, but awful in the evening. Crying, tired, tight. You can’t even hold him because he won’t bend. We are almost off of the keppra and the antibiotic is done. We just have a week of flagyl left for c-diff.

Aaron started preschool on Monday and was very excited. By Wednesday the newness must have worn off because he asked Turk when preschool was going to be over because it wasn’t as fun as Roxie’s!

We took off for St Paul on Tues. Jen (Alec’s nurse) got sick in the middle of the night and had to go to the hospital by ambulance. To make a long story short, the hospital in Shakopee MN was AWFUL. They did nothing for her. The GI dr was convinced it was ischemic bowel (no blood flow to the bowel), gave her 3+x the amount of narcotics and she quit breathing when she went for a colonoscopy, gave her so much pain meds that it paralyzed her bowel. This made things far worse for her because she really had an infection and the GI discontinued the order for the antibiotics so they were never started. Jen is currently supersick and drs in Shakopee discharged her for the hospital in SF.

So after 2 hours total sleep I set out for Alec’s appts on Wed. Neuro – we are going to increase and adjust times the neurontin is given to see if it helps crabbiness. I am giving it until we are done with the flagyl before calling up again. Physiatrist – Got orders for new wheelchair stuff, discuss baclofen pump to be put in 3-4 months after VNS surgery, was told Alec had the best looking feet for a non-walker she has ever seen! ADT – Discussed what Alec needed in a new chair. Got paperwork started and now the waiting process begins. Please pray for fast processing and approval!

I got home late, late Wed night after checking on Jen and her parents went up on Thurs am. We had no nurse cares, so I spent the day taking care of everything for Alec, trying to get the house in order, ran to the office, got Jen’s kids after school for the night, plus had night class. During class I got a call from the answering service at work that one of our fitters was in critical care in the ICU in ND after a bad car accident. I feel like I was half in class between my eyes burning, note taking, and running in and out from phone calls.

Friday Turk took off of work so I could work. He brought Alec in because his sats were lower than normal. The pneumonia was better, but c-diff awful. We are doing the Dimetapp thing to see minimize the congestion. Alec slept for a little bit and Turk had him propped on two pillows in bed. Turk heard him fussing when he woke up and when he went in to get him Alec was on his stomach wiggling around. I can’t believe he got on his stomach, but he must have had a seizure and the elevation flipped him.

Saturday was a day of work. I got up early and starting cleaning and organizing the house. Turk took care of Alec and Aaron then he had parade of homes for his spec house and the boys and I went to my Aunt’s to get Alec’s Halloween costume made. It is supercute and hope that he is in a better mood this year than last. Then I worked on schoolwork for a couple hours and then dug in to the surmountable task of medical records. They had already been pretty sorted so it only took 2 ½ hours. I only have seven phone calls to make to get the rest compiled so that will get done tomorrow.

Meanwhile, I had to miss a birthday party for my nephew to work on schoolwork. I worked on that all afternoon and have spent the evening working on work stuff. If we had nurse cares I wouldn’t worry so much, but the next few weeks are going to be interesting. We only have 21 hours out of the 50 we are supposed to have for this upcoming week. I have to make a few phone calls to the state tomorrow.

Pray for us because I am extremely stressed and everyone is suffering because of it.

Friday, September 15, 2006 1:09 PM CDT

Our first meeting yesterday was at CCHS. I was not impressed. From an organization that specializes in special needs children, there was not one child in a wheelchair that is in the preschool program. In fact the closest thing to Alec was one child who had a feeding tube, but was physically able to function. It was not what I was expecting and I didn’t get a good impression on what they would do to benefit Alec and his needs. Ratio on non-inclusion days is generally 2:1 (students:aide/teacher). Alec doesn’t have behavior issues and if you are dealing with two children, one in a wheelchair and one not, who is more likely to get left alone? On inclusion days it is 3-4:1. Alec needs pretty much total assistance to be involved in some of the activities and I don’t know how they are going to do that. Also, there is only a nurse aide that administers feeds/meds. What if Alec starts to choke and needs to be suctioned? And on switch toys, we have been loaned out toys here and there, but when Jen (Alec’s nurse) has asked for variety she has been told that there isn’t that many available. I need to do more investigating, but I was much more impressed with Harrisburg than CCHS, but I assumed that CCHS serviced children like Alec. So not the case.

Our meeting with Miller Funeral went well. I was very impressed and very glad we went. I am completely overwhelmed at our discussion and the amount of planning that has to go into a funeral. Flowers can be preplanned. I hadn’t even thought about that! I can’t begin to imagine looking a child tragically/suddenly and having to make all these snap decisions that are final. I will be glad when our plan is put into place. Our first items of business are filling out our folder from Miller and buying our plots. We have the casket and burial vault picked out. A new thing with the vaults it that you can get them personalized, like with Alec’s pictures and things he likes. We were supposed to go look at plots and flowers today, but I ended up running Alec back in to the dr. I may mosey on into the cemetery myself and start looking for someplace peaceful with a good view!

When we were at CCHS yesterday I suspected something was brewing. Turns out pneumonia in his left upper lobe and a small spot on his right upper lobe also. And he has been on orapred (steroids) for 3 days already! We are starting antibiotics and had already increased nebs so Alec should be feeling much better tomorrow night. Alec has been having lots of issues with his nose bleeding. It doesn’t matter if we are using a nasel spray or not. It has been bleeding so much that he has dry blood boogers that if removed are followed with fresh blood, coughing out bloody phlem from his mouth, and has tons of old and new blood coming out of the g-tube. I am not satisfied with the allergist here nor the ENTs we have seen at Mayo/SF so I am looking around. Dr DeHaan and I discussed it this am. Unless you actually have organs that are failing, I would think that there would be SOMETHING we could do to help this problem and/or prevent it.

I will update Monday unless something significant happens over the weekend. I have a ton of work to get done before we leave for St Paul.

Stephanie

PS. Thanks for the prayers!

Tuesday, September 12, 2006 2:03 PM CDT

The weekend for Alec wasn’t very well. I think out of the last 2 weeks he has napped once. Maybe even more than 2 weeks. We are decreasing the keppra even though the neuro doesn’t know about it! But it was the only thing added after a couple of good weeks at the beginning of August.

Alec went to the dr because he has a penis issue. Brad had tried to clean it out good on Sat and it ended up getting all red and swollen. Poor kid. We have had issues before with it not getting cleaned enough and we had been pulling the skin back but it turns out the skin was starting to grow back around the head of his penis. The dr ripped it all back and it was bleeding. I can’t believe how far it had to get pulled back. Of course we only pulled it back until it stopped because we didn’t want to hurt him, but OWWW! Hopefully with the cream it will be healed soon. (And yes, he is circumcised).

Yesterday we went to the Harrisburg School to get a feel of what it would be like should be decide to send Alec there. We got to CCHS on Thurs and check that out too. His next IFSP is in Nov and we transition in January. I know that Harrisburg would be great for Alec as far as socialization goes because he loves kids and loves to be around them, plus as of now his therapists would all stay the same too. Another plus would be that his only daycare provider (before our nurse care started) now works for the school and would most likely transport him. At CCHS though he would be able to get his pool therapy during the day. The best thing about this situation is that the school has never had a child a severe as Alec so we get to decide what we want. The Harrisburg School is the public school district we live in and CCHS is a place where children like Alec live year round and go to school to.

Thursday will also be interesting because Turk and I are meeting with a funeral home to start to get Alec’s things in order. The last thing I want to do when he dies is have to make a bunch of snap decisions during extreme distress. I have already written his obit in my head, but we need to decide plot, casket, clothing, music for service etc. I will be glad when this is put in place. Even if he lives 10 more years we will be able to make the necessary changes because the major decisions will have been done.

Please pray for us because it will be hard doing this, but I have to be realistic about our situation.

Stephanie

Friday, September 8, 2006 12:40 AM CDT

What a joke on trying to get Alec's wheelchair at Gillette. I feel like I have made a million phone calls and everyone either redirects me or claims they are going to call me back. I don't have the energy to do it again today so it will have to wait until Monday.

Alec has not had very good days lately. The allergy appt was a waste of time. He is on orapred (steriods) for five days. Last night he woke up coughing and then also threw up. I was holding the syringe against my shirt and when I unclamped it it shot out all over. I had a perfect puke circle. Gross.

Since we are going to do surgery for the VNS I am trying to get Alec in to see another dr when we are at Gillette. The first available appt was Jan! So hopefully we are going to be squeezed in and surgery can be done ASAP. He has been having a big terrible seizure every night after he has been asleep for a little bit. His entire body stiffens with his arms out and he moans in rhythm. We also need to look at a baclofen pump for him too. I want him to have a bolus of baclofen shot into his spine to see how/if the pump would work. If we see good results I would like a pump placed when we do surgery for the VNS. That way we wouldn't have to anesthesize him twice.

We have also decided to do another muscle biopsy at Mayo. This will be frozen and sent to Dr Shoffner. We will not have to pay anything for this since it will all go through Mayo. Not fresh, but at least another try that won't cost $15,000. I am anxious to get that done and maybe have some more answers by Christmas.

What a zoo things have been lately with trying to schedule everything, plus with classes starting!

Tuesday, September 5, 2006 2:25 PM CDT

Today is a sad day at our house as we mourn the loss of Steve Irwin, the Crocodile Hunter. Animal Planet is a family favorite at our house. I told Aaron about it and that he had died from being stung from a stingray. Shortly after the Aaron turned on the TV and came running into the kitchen to tell me that Steve wasn’t dead because he was on TV.

As usual, time is going too fast. Alec has not been up to par mostly due to allergies. We go in and see the allergist this afternoon and I will be interested to see what concoction he can come up with now.

Last Tuesday we had family pics, of which Alec fussed the entire time. I was bummed, but yet I know there are more family pictures because I have always prayed that our last portrait be fantastic!

Friday night we went to my youngest brother’s football game. The boys were fantastic and the weather was pretty good. It stopped raining and didn’t start again until after the game was over. We are going to try it again this week!

Saturday was Turk’s cousin’s wedding. Alec fell asleep right before we left and slept through the entire wedding. His little catnap had him in rare form for the reception and dance. Ryan, Turk’s cousin, told my mother in law that Sat night was the first time that he had ever seen Alec smile. All the kids busted a move and Alec loved doing the chicken dance and hokey pokey.

I have worked for the past month getting our house back in order and we are 90 percent done. I have one room with Alec’s medical/insurance paperwork that I am not going to touch until after Christmas. My night classes start this week. All of the bills from Colorado are coming so I get to begin all those phone calls to insurance and everywhere else under the sun.

One the seizure front, Alec seems to be getting crabbier and crabbier as we increase the Keppra regardless of the B6. Turk and I have decided to go with the VNS. I am going to see if we can try to get it done in late Sept or early Oct. (As if I am not going to have enough time already!).

We have also decided to do another frozen muscle biopsy at Mayo and sending it to Shoffner. I have put in a call to our neuro there to get that scheduled also. We can’t afford to spend thousands of dollars trying to get to Shoffner. If there was an actual treatment available currently we maybe would have.

I am going to try to start updating more!!!!

Have a wonderful day!!

Stephanie and Family

Monday, August 28, 2006

This update is WAY past due!

Camping a couple of weekends ago was great. By Saturday we were all feeling better and went to the Riverboat days parade in Yankton on Saturday morning. We enjoyed the family time and hope to get out camping for one short weekend in Sept.

Last week was spent getting caught up at work, which will never be done, but as long as I can feel like I can float in an innertube instead of feeling like I fell through and am hanging on with my fingers I will be ok!

Last Thursday Brad wanted to take the boys to Chuck E Cheese to play and then to Barnes & Noble for some new books. Friday we had Aaron's preschool open house, which he is super excited for! Brad had a fantasy football thing so the boys and I did some shopping and met some family members at Chuck E Cheese! Saturday was spent cleaning and running errands and Sunday was filled with church and visiting Turk's cousin and his family (they just had a new baby).

On a side note, when I was sick Turk brought the boys to one of the state baseball games. His parents rode with to Mitchell. Alec had a fly on his face and Patty (my mother in law) clapped her hands in front of her face to try to kill the fly. Alec freaked out and started bawling, lower lip protruding and everything. Brad said it must have scared him so bad!

So...on Sat I was sorting and cleaning Alec's bedroom while both boys were on the bed. Aaron was on fly patrol keeping the couple that were in the room away from Alec. The radio was on I was singing, dancing, and clapping. Aaron yells at me to stop clapping because it scares Alec.

One night last week Brad was working late and both boys were in bed with me. Alec was supposed to be going to sleep but was in such a good mood I couldn't help but play with him. Aaron rolls over and says to me "Don't get him all wild (riled) up before bed."

This is my last week of "free" time. After Labor day I have two night classes starting (T,TH). A couple of weeks after that Aaron starts swim lessons on Monday. Alec already has pool on Wed. So if you call or email and I don't respond right away, you know why!

Thursday, August 17, 2006 12:48 AM CDT

Saturday night Turk and I went out to eat. Afterwards we were going to go have a beer somewhere, but I told him to go home because I was feeling sick. Sunday I went into Acute Care for drugs and am still battling this upper respiratory crud.

We have not been doing much else of anything. Today the boys and I went into the dr. We went in yesterday, but Dr D had left to go deliver a baby! So I am back on a different antibiotic, Alec is started on one, and Aaron is back on singulair for his allergies/asthma.

We are supposed to be leaving to go camping for the last time this summer. I pray all goes well if we go!

Friday, August 11, 2006 11:33 AM CDT

FINALLY, I AM GOING TO UPDATE!!!!

To start with the week of July 24. It was a horrendously busy week. I was in daily contact with Alec's neurologist in St Paul adjusting meds. Alec was just fussy, crabby, inconsolable. We finally had one good day toward the end of the week where it seemed the neurontin was working, at the original dose we started him with. Don't ask me why it wasn't working before!! Of course, maybe the baclofen increase finally worked too after a week.

That week I was busy packing for our week at the lake because we were leaving early Sat (29th) morning. I also worked everyday that week and was studying for my final that I took on Friday (28). And I do have to brag because I got a 99+ percent in the class and got a 101 percent on the final!! I got the highest grade in the class, but like my instructor said, I also have the real life experience (it was a Med Terms class).

Our week up at the lake was awesome. It was grossly hot on Sun, Mon, Tues so we all sat around practically naked (pleasant thought eh? :( ) and Alec was naked or in a diaper in his bath chair underneath his misting fan that Grandma and Grandpa got for him. The rest of the week was cooler. Alec was great the entire week and I think that him and Aaron both slept in until 9am or later. Of course we gave Alec his night night meds later than usual because he was so good. Aaron was very proud of himself because he waterskied behind the boat. By the end of the week he was doing awesome. The only bad part about the vacation was that Aaron was stung by a bee on Wed and the whole rest of the week he was on bee radar watch. He would start to freak out once he actually saw one, scream once it got into a five foot distance, and shriek with terror if it came closer. When it got to that point he was usually on top of the person he was closest too, crying and wanting to go into the cabin.

This past week I have been slammed at work trying to catch up. I should be working today, but I am off trying to get Alec medical records organized. I finally have all of what I have piled together. I have the get the last 15 months worth and then I will have them all. I am putting them together for the immunologist that we are seeing in October. The person I talked to about the appt and what we needed was trying to give me the fax number to fax them to. I laughed at her on the phone and told her that would be fine if she could sit there for 8 hours minimum. I don't think she knew how to respond, but the fact that I blatently laughed at her probably put her off too!

Knock on wood, Alec has probably had one of the best weeks of his life. We are praying that it continues and we have had a lot of fun with him this week.

I am going to sign off now as the start of getting medical records had turned cleaning out downstairs bedroom that you couldn't even walk through. Now I decided I want to rearrange furniture and rooms. I think I am getting myself into a bigger mess!

Monday, July 24, 2006 1:59 PM CDT

I hate not knowing what I can/should do to help my child. Saturday Alec slept in until 8:30 and then proceeded to fuss and crab the rest of the day without taking a nap. He was almost asleep a couple of times and then had a big seizure that woke him up. Sunday am he was up from 4am to 6am. He then went to sleep until 9:30. It was a pretty okay day until mid afternoon when the same crabby cycle started again. Alec went down to bed around 9pm last night. Then at 10 he had an episode where we had to suction him due to snot draining down his throat he was choking on. He went back down good after that.

So…this morning the child would not wake up! Jen said she had tried everything so at 10:30 I told her to put him the tub. And he did still not wake up. So I call the neurologist and true to form, as soon as I am off of the phone with her I call home and Alec had just woken up. For now we are changing the dosage of the neurontin. We leave to go on vacation again for a week and I hope that things can go smoothly while we are gone!

On a side note, my inlaws were over for supper on Sat night. In the process of Turk grilling and me inside getting this ready to go, Aaron was out back playing with his cousin and the two neighbor boys. I look out the patio door to check on them all and see Aaron over the fence with his pants around his ankle. I sit there a watch him trying to decide what he is actually doing and I watch him bend over, pick a handful of grass and use it to wipe his butt. I sent Brad out to fetch him because I didn't want to deal with it. Aaron scampers over the fence and told Brad the he couldn’t hold it. Turk said his butt was all full of grass when he brought him into the bathroom to clean him up! HAHA. I am glad that we do not have any neighbors behind us anywhere!

Saturday, July 22, 2006 8:44 AM CDT

We are home!! Yeah!!!

Alec's hip xrays looked A-Okay according to the physiatrist. We talked about the baclofen pump, and the possibility of botox. For now we are upping the dosage on the baclofen to see what happens.

From the neuro standpoint, we are just not quite sure what we want to do. We went home starting neurotin and once that is going for a while I think that we are going to restart Keppra. We also have a couple of other seizure med choices left to choose from, solumedrale(sp?) and pegadone(??). I can't quite remember. Otherwise we may go back through Alec's list of meds and retry some others since his seizure types have changed. Then the VNS hangs in the air too!

I have no idea what we should be doing. We go back in Sept to see the neuro, physiatrist, and have a meeting to get Alec a new chair.

Friday, July 21, 2006 10:01 AM CDT

No good news with the dilatin. I had no idea Alec was seizing as much as he was. So now we are going to try Keppra again. Alec was on that while he was on the ketogenic diet. It did nothing for him then, but the diet was awful to begin with plus with his seizures now changed. I am not going to hold my breath. We may be seriously looking into the VNS.

I would imagine that Alec is having over 200 seizures a day. Unbelievable. I must get the crappy mom award for not knowing that!! I am so very glad that we came up here.

Yesterday we did a hip xray. No news of those results. We are waiting for the neuro, physiatrist, and wheelchair people to come in today.

Last night we trialed the neurotin. Alec slept very sound from around 9 until 8:45 this morning.

Thursday, July 20, 2006 8:52 AM CDT

The trip up yesterday was interesting. You all remember about the torrential rainfall and hail that we drove through on our way to Colorado? Well, that was like a light mist compared to the continuous downpour and beating hail that we drove through yesterday to get to St Paul. We had to pull over twice for hail just after Windom, MN, I kept hydroplaning and almost lost control of the van (that was the first time we stopped!). It then continued to rain all the way to St Paul, but it was manageable rain.

We were hooked up and going on the VEEG by about 3:30. We were ready to go by about 2pm, but the computer kept having issues. By the time that we saw the neuro at 8pm Alec had already had around 40 seizures. Wow, I had no idea he was seizing as much as he is! Of course I don’t sit there and watch him 24/7 either. Although he was seizing quite a bit I do have good news to report…….the Infantile Spasms are gone!!! The neuro says it is a miracle!! So, what do we do about these other ones? She said they are more tonic, except some are focalized and some are generalized. Alec’s first seizures were myoclonic and were able to be controlled by Phenobarbital, but then the spasms appeared and had been completely out of control.

Last night we loaded Alec up with Dilantin, which is a similar drug to phenobarb. With the dilantin it is easier to get the level up faster without knocking Alec out in the process. We are going to see how that goes today.

Tonight we are going to give him so neurontin to see if that will help him sleep more. Last night we not real well, although the fact that I slept in bed with Alec did not help either. And we do have a roommate, who loving us I am sure. Alec’s roommate was asking the nurses when we were going to go home and if we were going to take Alec with us! Alec was up at 4 and now as I am typing this he is going down for a nap. Hopefully he will get some good sleep.

Tuesday, July 18, 2006 3:44 PM CDT

Camping was a HOT, HOT weekend, and not so relaxing. Alec was okay through most of it, but when he won't nap it is not enjoyable for anyone. Aaron pooped in his pants twice. Just how I wanted to spend my weekend! I was overtired and crabby and yelled at Turk while we were getting ready to go because he was opening the slide to the camper and bent one of the cupboard doors that had swung open catching it on the slide. I always check it because it has a tendancy to do that. Well, I ate my words on Sunday because I was watching the jogger to not get stuck in the slide and ripped the entire cupboard door off. Guess from now on I should learn to shut my mouth! :) Today the guy that makes Brad's cabinets is going over the check it out and see what he can do about it.

Alec has been much of the same. I almost called this morning and cancelled the appt because he slept so well last night. Come to find out today he only napped for 40 minutes. We will be leaving early tomorrow morning. Alec's nurse, Jen will be coming with me. That is going to be a huge help because I don't have to stop constantly for medical stuff!

Take care everyone and I will report hopefully tomorrow night from St Paul.

Wednesday, July 12, 2006 4:00 PM CDT

UPDATE: THURSDAY JULY 13
I am glad that God thinks I am so strong and have so much time on my hands. Last night as I was stopped at a stop sign a little after 5 I was rear-ended by some guy. It wasn't bad enough that my air-bag deployed, but bad enough that his license plate numbers are on my bumper. Brad was going to take Aaron right to Bible School so that Aaron could eat supper down there. So Alec had JUST fallen asleep, our camper was all hooked up to the truck, so Turk took our neighbors van to come and get Aaron, who was then going to be late for Bible School and would have to eat supper on the way down. What a mess. At least nobody was hurt and he was honest about stuff, like he was reaching for his cell phone when he hit me.

I have no idea when I am going to get time to get that fixed. We are probably going to have to go up to Gillette next week for a video EEG for Alec. Hope you all have an enjoyable weekend!!!

Where does the time go?? I feel like my wheels are constantly spinning but I am getting nowhere!!

Our 4th of July was good and relaxing. We went to the parade in Inwood and then all got a nap in later that afternoon.

I took Alec in last week to get him looked over because he was still junky sounding. Brad took him to the allergist the next day and the allergy dr decided to take him off of the zyrtec to loosen up his secretions. We were supposed to trial that for 2 weeks, but we started Alec back on it last night.

Last night Brad suctioned green snot out of Alec’s throat. I took him in the see Dr DeHaan today. We got Alec on antibiotic and hopefully it does something as it is not augmentin because he is starting to use that too much. If we use it to much it will start to not work. I also brought up the fact that Alec’s urine output is decreased and has been for a while. Yesterday he didn’t pee until 11 am. He is on a night drip from 10 until 6am! We ran a kidney function test that came back normal so we are increasing his water intake.

I put a call into the neurologist because we have been having a seizure/sleep issue. I think we need to get stronger drugs. Yesterday he napped for 40 minutes, had a seizure and woke up. Lately he has been falling asleep and then waking up anywhere from 9:30 until 10 and then not going asleep for a while and crabbing the whole time. I am sure the crabbiness it is from being so overtired. Then he doesn’t nap and is crabby all day.

We are also going to see a physiatrist when we go up to St Paul in Sept. Alec has been having other issues beside the spasticity, different leg and foot length, and equipment. His legs have been really bad at all of the sudden turning purple and getting bright red/pink blotchy spots.

I am also in the process of getting in to see Dr Shapiro, and Immunologist, sometime in the fall also.

I apologize for emails that have not been returned. I was having email issues after I get back to work from our Colorado trip. I have also been bombarded with getting my quizzes done from school since I also fell behind on our trip. Aaron is in Vacation Bible School this week from 6pm-9pm so I have been running my butt off for that. We are supposed to go camping this weekend. Hopefully we are ready to go before Sat!

Today I am kind of in a down mood. I worry about Alec and this whole urine thing, plus the irregular pooping as just signs of the disease progressing. What if his life is already half over? I would like to have an exact diagnosis and go and see Shoffner, but the state is denying paying us directly for their services. I have to call up to Dr Renaud and get a letter from her. I have a pounding headache. Work has been dragging me down, which is all the more reason I want to be done with school. I worry about how I am going to transport Aaron back and forth from daycare to preschool 3 days a week in the fall. We are going to have to go on my company’s group health insurance before too long costing an extra $200/month. I have to get all of Alec’s medical records in order and get the records from the past year from everyone. We got our house plan drawn up and are in the process of getting it priced, but I don’t know if we will be able to afford it.

Oh well, this too will pass and I am confident everything will be fine. One day at a time right??

Wednesday, July 5, 2006 1:10 PM CDT

Day Seven – Thursday

We woke up at the crack of dawn to start getting things ready to go so that we could leave by 10 or 10:30 for Six Flags. Got everything packed, loaded, gased up the van, and got Alec loaded. Donnie and Patty took our van from Estes Park back to Denver with Alec so that we could go straight to Six Flags with Aaron. Of course we open the van to show Turk’s parents how to run the ramp and unbuckle Alec. The ramp is all the way out, lifts up about 5” off of the ground and won’t move any further. GRRRR. Thankfully the issue did not last long and it returned back. Six Flags was awesome. Aaron had a great time. Turk and I wanted to get in a roller coaster ride for us two so we left and trekked all the way across the park to ride Twister II. When we were 2 people deep from getting on the ride breaks down. We wait for awhile and then leave because it doesn’t look like we will be getting on anytime soon. While we were gone Aaron was at the Looney Tunes show and actually got up on stage and busted a move with Bugs Bunny. I was so disappointed that we missed it. We then left the park and went and picked up Alec who hadn’t slept all day and was crabby. We drove to our dive motel (my inlaws either had puke or poop down the side of one of the beds) and crashed for the night.

Day Eight – Friday

Alec was up for 2 hours screaming and yelling at the top of his head. Load the van again. Drive for what seems like forever, forever, forever………Make it to Rapid around 4:30. Unload the van, again. Eat supper, hang out, etc, etc. Alec wakes up at Midnight. He is up until 5 am. He was not being quiet either. He was up yelling like he was the night before. Turk could tell I was getting frustrated when around 2:30 or 3 am I was yelling right back at Alec, “Alec, shut up! Would you just SHUT UP!”

Day Nine – Saturday

Get up and eat breakfast. Load the van for the LAST time. Hit the road. I cannot wait to get home. We are all exhausted. Stop in Chamberlain after I had just fallen asleep in the van. Gas, pee, diaper, and food break. Stop in Humboldt for a poop break for Aaron since he had to pinch it off for about 30 minutes. It was either that or go on the off ramp because I was not deviating from the interstate to drive 15 miles into some small town. Get home around 5. Unload the van for the LAST time. Sort my mail into piles so I know which billing companies I need to call to next week. Unpack and finally get into bed around 11:30. Waaay too late. I was not looking forward to having to get up for church the next day.

Sunday – July 2

Woke up at 8:30. Everyone else still sleeping. Woke up Aaron and had him come to church with me. Left Alec sleeping as the poor child had to be more exhausted than we were. Got back from church at 11:30. Alec is STILL sleeping (he never does this on a day we can actually sleep in!). Woke him up at 12:15. Ran to my brothers house to see my aunt who was back from Pennsylvania. Ran back home to pick up Turk who was organizing the house. Left and went out to Humboldt to visit with Turk’s parents and watch the baseball team play and then the fireworks display.

Monday – July 3

Work. I have never been so happy to get back to work in my entire life. I was one of 3 people in the office that day. It was a VERY productive day for me even though I was tired and it was a 2 dt coke day for me. Turk had left work early, mowed the lawn, picked up Aaron, picked up fireworks, and bought groceries. When I got home Alec had been crying (sad crying like he was hurt) for a good portion of the day. Made an appt with Dr DeHaan for Wednesday (today). Drugged Alec up with Motrin, Tylenol, Clonazepam. Nothing much seemed to help. Left and went down to my Grandma’s and Grandpa’s house to see some relatives that were in town from Texas. Went to my brother Caleb’s baseball game (the first and the last one of the season we are going to make it to). Went out to my mom and dads to shoot off some fireworks with Aaron. Got home around midnight. We are truly insane. As if we aren’t overtired already!!!!

Wednesday, June 28, 2006 11:56 PM CDT

Day Six – Wednesday

Today was a good day. Alec woke us all up at the crack of dawn requesting attention. We laid in bed as long as we could pretending to be asleep. We got up and did our usual morning routine of meds, meds, vest, fed, meds, bath, neb, mouth cleaning. Ate breakfast in the meantime. I got out shopping downtown with my sister in law Darcy. Aaron went for a drive up in the mountains with Mark and Leslies and their kids. Turk stayed back and hung out with Alec. We scarfed up lunch and the headed out to a stable for horse trails rides with Mike and Darcy and the kids. Donnie and Patty, Turk’s parents, watched Alec for us for the afternoon. The horse ride was awesome! All four kids did fabulous each riding their own big horses! That took most of the afternoon. I did make it in to the Happy Scrapper store and picked up some scrapbooking things. We relaxed this evening with supper, kids games, and cards. Alec was fussy for ½ of the day, but overall it was the best day of this trip yet. Tomorrow Six Flags are in store. Donnie and Patty graciously offered to take Alec for the day for us so that we can go. I can’t believe our trip is almost over. I feel like it just started!! And 5 years from now I am sure that we will laugh about this adventure. Heck, we already have laughed!

Tuesday, June 27, 2006 11:29 PM CDT

Day Four – Monday

Wake up at 6am from Respiratory Therapy and Alec crying. Talk to drs. Get augmentin prescription. Leave hospital. Alec is still struggling. Drive to Walgreens, get prescription filled. Head back to hotel room. Drop Turk off at the front desk to get the clerk so that we can get into our room. Pack, pack, pack, meds, meds, meds, vest treatments, neb treatments, etc. Unload room and load van with the help of Turk’s brother and cousin. Get everything loaded and ready. Load Alec (who just fell asleep) in the van and buckle him up. Notice that a pile of poop has accumulated in the bottom of the kidkart. Unload Alec. Turk cleans Alec’s kidkart. Paul (Turk’s Brother) and Kristin (Turk’s cousin) change Alec. I get Alec new clothes. Crap is everywhere, literally. Load Alec again. Go check out. Don’t have to pay anything for the rooms because of the mess. Praise God, maybe things are on the upswing. Drive up the mountains to Estes Park. Get there around Noon. Check in. No AC in room. Switch rooms with Turk’s brother Mark. Can’t get into rooms until after 2 because they aren’t cleaned. Unload everything out of the van and pile it in front of the room to get Alec’s medical stuff and make formula. Check out room. Musty and gross. Discuss what to do since Alec is sick and his sats are around 92. Talk to front desk. Talk to Paul. Find out his family got moved because the room they were supposed to be in was flooded. The flooded room was right next door to the one that was ours. Debate changing rooms with Paul. Drive to 3 hotels that are close by to check them out. Rent a room at the Comfort Inn right next to the lodge. Load up everything into the van, again. Drive to the Comfort Inn. Unload van and organize room. Alec falls asleep around 3:30. Sats at 91. He needs his feed. No formula because Turk left it in the fridge in the dirty room we were supposed to be in. Send Holly after formula. She doesn’t return. Send Turk after formula. Cleaning people brought it up to the front desk. Alec finally eats an hour late. Eat supper, go for a walk. Bring two crying boys to room and put them to bed while Turk is playing poker. Fall into bed exhausted.

Day Five – Tuesday

Wake up at 3 am to Alec, change poopy diaper at 4. Sleep until 8:30 until my mother in law calls and wakes us up. Alec’s sats are 98!!! Yeah!! Today is going to be a good day!! Go eat breakfast. Meds, vest, change poopy diaper, feed, change poopy diaper, Turk is getting meds ready for the next 3 days, I am getting things ready to go to the park for the day, change another poopy diaper that sounded like the atomic bomb exploding. Poop is pouring out of the diaper. Shower Alec, shower myself, Turk showers. Load and leave finally at 11:40. Everyone is waiting for us for family introductions and pictures since they have all been at the park since 9:30. Call Ken (our pharmacist) at Walgreens in SF for something we can give Alec to plug him up until we get home. Arrive at park, unload Alec and stuff from van. Van door won’t shut. I get into a tizzy. This may be the breaking point of the last few days (I was wrong, that was going to be soon though). Call Mobility all hacked off because the van door hasn’t worked right since it was converted. Paul and Turk mess with door. Finally get it shut. Take pics of Grandma and all of the Grandchildren. Take picture of Grandma with all of the Great Grand children. Get ready to take pictures of our family. Pile of poop in the bottom of the kid kart. Take Alec back to van. Go and yell at people who parked too close to our van to move theirs so we can get the ramp out. Paul and Kristin change Alec, again (we owe them!). Dismantle the kid kart as crap was everywhere. Alec has no clothes left because he has pooped over everything the last couple of days. Try to wash stuff in the sink. Kristin takes Alec, who is just in a diaper up to shelter house because everyone is eating now. Paul asks me if there is anything he can do. I cry and tell him I just want to go home! Darcy takes me away from everyone and we go to Safeway to get Imodium for Alec. Get back to park. Give Imodium. Leave to take Aaron back for nap. Wash clothes and kid kart stuff in bathtub (praising God for washing machines the entire time). Mark drops Turk off. Take clothes and wheelchair stuff to Laundromat. Put stuff in washer, go to park, go back and put stuff in dryer, go to park, go back and fold clothes, go to park. Sit down and have a drink, finally at 3:45. Alec napped from 12 to 4. Have a pretty good time at the park from then on. Later in the afternoon Shaw (Kristin’s 3 yr old) asked me “How come you were crying”. I had to ask her which time! Eat supper, go back to hotel, hang out. Both boys are sleeping. Peace. And no more poop!

Tomorrow has got to be a better day!!

Monday, June 26, 2006 7:07 PM CDT

Colorado Trip

Prior to Departure

Alec is wheezing on Thurs night. Jen came over and watched him while Brad got some things ready and while I was running all over Sioux Falls looking for dress sandals for Aaron and getting all of our last minute needs. Alec’s wheeziness seems to go away after a neb treatment

Day One – Friday

We leave Harrisburg for Rapid City. We were going to go back and get my pillow, decided I didn’t need it. Almost out of Harrisburg and we had to run back and get something for Brad (couldn’t tell you what because my brain is fried). Go to the car wash, stop at Walgreens and pick up prescriptions, go pick up Aaron, go back to Harrisburg and pick up the IV pole that I forgot in the garage. Leave Harrisburg for Rapid, again, 1 hour later. Drive out to Rapid – pretty good. Alec starts his croupy cough. Brad and I wonder if something is brewing. Get to our friends house, unload, eat, relax. Go to bed at 1. Get up at 3 with Alec because he is coughing, crying, breathing issues, snotty, can’t sleep. I move Aaron in bed with Turk, I go lay with Alec.

Day Two – Saturday

We get up and have breakfast, pack up, load up. Leave Rapid at 10. Get to Hot Springs, fight with Brad on what is the correct road to take. Drive 2 hours to Lusk Wyoming. Get out to get gas, lunch, bathroom break. Wait for womens restroom to get cleaned. Finally get everything and everyone loaded. Drive out of town on the wrong highway. Realize it 10 miles out of town. Drive back into town. On the way Brad takes Alec out of his kidkart to change him. Alec is poopy. Get into town and stop at nearest gas station. Change Alec’s diaper and his clothes on the outside ramp because our van is so packed it seems like the tail end should be dragging. Get Alec back in his wheelchair. Aaron has to poop. Bring him into the gas station. 25 Hutterite women waiting in line for the restroom. Take Aaron back out, drive to Subway. Finally get out of Lusk after loosing an hour. Driving to Cheyenne, Wy. Everyone is sleeping, except Alec who is quiet. Finally get to Cheyenne after what seems like forever. Stop and gas up. Aaron falls in a huge pothole and scraps himself up. Head out of Cheyenne for Denver. Drive through torrential rainfall and hail. Finally get to our hotel in Denver at 5:30. Check in, unload boys and a few items. Go to room 207. Key does not work. Alec is crying because he is tired and doesn’t feel good. Go back down to front desk, get new keys, go up to room. Keys do not work again. Go back down again to front desk, get grilled 20 questions from the 350 desk clerk on how I used the key. She tells me it should work and she will come upstairs with me. Go upstairs, wait for her to make it up behind me. Desk clerk gets to 207, tries keys, don’t work. (Did I not just tell her that they were not working????) Decides to move us to 211. Wait for her to get down there and back up. Unload, unpack, get medical stuff taken care of, etc, etc. Ann (Eli’s mommy) came over and we visited, ran to Target, ate supper. Decide Alec is pretty bad so Ann comes with me to take him to the North Suburban Hospital ER. Go back and have doctors and nurses flying around due to Alec’s respiratory distress. Tell them he needs a racemic epinephrine neb and a decadron shot. Alec gets 2 atrovents, 5 albuterols, sub cut epi shot, solumedrale (through iv), and rocephin (through iv). ER doctor tells me that I need to choose a hospital to have him transferred to because me son is CRITICALLY ILL. ER Dr finds it strange that I am calm, so she is trying to drill it in me that me son is CRITICALLY ILL. Alec sounds 100% better within 3 minutes from the sub cutaneous epi shot and solumedrale. Ann runs back to hotel and gets stuff for us and brings it back to North Suburban. Get transferred to Denver Children’s. Talk to Turk in the meantime, he took Aaron swimming and then couldn’t get into room 211. Goes to front desk, gets mngr to let him in and tells him the maintenance man will be by in the am. Sit in the ER for 3 hours. Tell them I want an antibiotic since the North Sub Dr said he had double ear infection and rocephin doesn’t work. Also tell them I need xopenex because I didn’t pack enough. Finally get a script for Orapred and Albuterol. Wait another 45 minutes for the xopenex. Tell them I don’t want it. Call a cab. Wait, Wait, Wait. Get it cab and drive 80 miles an hour back to hotel almost getting hit and killed by another car. Get to hotel, go to bed at 3 am.

Day Three – Sunday

Wake up exhausted, but not admitted. Alec is sick, but somewhat stable. Get ready for the day, load up, go back to hotel room to grab suction machine, can’t get into room. Go to front desk to be let back in, get stuff, go get prescriptions from Walgreens, eat lunch, go to the zoo. Go back to the hotel, get let into our room again by front desk, get sweashirts out of our room. Go to Turk’s aunt and uncles house for supper. Alec has a nosebleed and drain a bunch of blood from his stomach. Take care of medical stuff, get Aaron to eat. Aaron is bawling on the trampoline, won’t get off, super overtired. Make all of the kids stop jumping, get on trampoline and pull. Aaron off of it by his arm and he is trying to get away from me. Make his sit in a chair while he is screaming at the top of his lungs and crying. Put Aaron’s shoe on, starts flailing all over and trying to get away. Pick him up to bring him to van. Aaron punches me in the mouth. I am shocked. Start crying because it was either that or beat him to a bloody pulp. Spank him, speedwalk to the van dragging him by his arm holding one shoe in my hand while the other is on his foot. Buckle him up, go back in and get everything and Alec, load up and leave with Alec fussy, Aaron screaming, and me crying. Get back to hotel, get things put together and Aaron under control. Decide to bring Alec back to Denver Children’s at 10. Leave for the hospital, get in and tell the ER doctor that he needs antibiotic. Get augmentin, and a couple of neb treatments. Sleep on stretcher for bit while Turk sleeps in a little chair. Decide to be moved to ER observation. Rearrange room so we can sleep. Alec finally goes to sleep at 2, and Turk and I shortly thereafter curled up head to foot on a twin bed with me sleeping under a shelf. Tell Turk before I fall asleep maybe we should make a movie.

Thursday, June 15, 2006 9:44 AM CDT

FATHERS DAY
By Michelle Guppy

I was looking for a Father’s Day card
Among the dozens and dozens everywhere.
So many perfect sentiments
For typical father’s without a care.

“I love you Dad!” – “You’re the greatest!”
“Sit down, relax and play!”
“Do all the things that you love to do
on this your special day!”

“Yeah right, he wishes,” I chuckled.
But real Dads, where are the cards for them?
The Dad’s who have special needs sons
Who’ve truly made them men.

The Dad’s who gave up fishing
And now only dream of a game of golf,
The Dad’s whose son’s are in the hospital,
Because of pneumonia from a cough.

So many things about life they don’t get
Those typical Dad’s without a clue.
About what it’s like to have a disabled son,
Who might not ever tie his own shoe.

About what it’s like at the office,
Hearing others brag about their kids triple-play,
Knowing if he tried to tell them,
They would start blankly and not know what to say.

So many kids choosing cards that proclaim,
“Daddy, you’re my hero!”
But what truly makes them a hero,
Those buying the card do not fully know.

Heroes are Dad’s accepting that their child,
Might not ever be a little-league champ,
Who now cheer them on at therapy,
Instead of going with them to Boy Scout Camp.

Heroes are men who work hard day and night,
And yet find they are always broke.
Because of expenses, equipment & challenges
Of a never ending financial yoke.

They are the men who would give their life,
For a treatment that would cure their son,
They are the men who understand the victory,
In each tiny battle their child has won.

I give up and am too tired to keep looking,
For that elusive “special” Father’s Day card.
I have to laugh at the irony that this too
Is something else that has to be hard!

So instead I’ll write down on a piece of paper,
“I LOVE YOU WITH ALL OF MY MIGHT!”
From your son who knows you’re a hero,
The one who hears you pray for him every night.

Happy Father’s Day to all the Dads out there, especially for the Dads who have children that can only tell their Dad their feelings by the love in their eyes and the Dads that can no longer hold their children as they are in heaven.

Aaron learned to ride his bike in two nights. We have been going on bike rides almost every evening. Alec loves to ride in his trailer. He usually starts to fuss if we stop!

Things have been going pretty good for us. Alec is still not doing as well as he was doing two months ago before we started this seizure drug change. I had to increase his clonazepam at night so that he would start sleeping better. We have been increasing the Lyrica too. His nurse told me that he was doing really well with his seizures during the day, not having hardly any big ones. The after 5 pm things would get worse until he would go to bed. Two nights ago I cut his clonazapam back down to the dose he was at before to see if it was the Lyrica or the Clonazepam that was making his seizures better during the day (we are giving a higher dose of lyrica at night). Yesterday he had a bad day, so we know it was the clonazepam. So, another call into the neurologist, and we are going to leave the lyrica and see what happens over the night week and then increase the clonazepam. We need to get things figured out before we leave for Colorado.

Please pray for safe travel for all of our friends who are attending the United Mitochondrial Disease Foundation Conference in Atlanta this weekend. If we weren’t going to Colorado, I would have loved to have gone. I am anxious to hear from everyone afterwards.

I do have to share a story from Memorial weekend when we went to Turk’s cousin’s wedding. Aaron says to Turk (I was out with Alec) Dad, do you keep that paper (wedding ceremony program) so you remember who is getting married? Dad, are they going to have a baby? Brad – When God decides to give them one they will. Aaron – Are they going to have a baby tonight?

Wednesday, June 7, 2006 9:20 AM CDT

Wow does time every fly!!

We left Wednesday camping for the rest of the week. Of course it was fast and furious trying to get ready to go. Thank goodness that Brad didn’t work on Wed and packed all day! True as usual, nothing can just be easy! I got home at 4:15 to pick up Alec for the pool at 5, found out the nebulizer was not working, we needed to pick up a prescription at the pharmacy yet, couldn’t get the portable DVD to work with our TV we wanted to put in our room, etc, etc. Went to pool, ran to SV Home Medical Equipment, stopped at Best Buy, ran back home. We wanted to leave by 6:30. We pulled out of the house at 7, Brad had forgotten to stop at the pharmacy, so I ran there while he went to Tea to pick up supper and wait for me because we had to leave our van to get the second seat installed. We finally let Tea at 8! We had a very enjoyable time. Alec was great and took long naps every day. Aaron took a couple of short naps but was totally burnt-out by Sunday. Turk and his brothers actually caught fish this year for the Humboldt Walleye Tourney! While we were out camping Aaron and his cousin Caden were pretty much attached at the hip. One night they were in the camper while we were at the campfire. After awhile Aaron goes and finds Turk to tell him “Caden and me heared something and it doesn’t hear good.” One evening I was helping my brother-in-law put up of tent for his kids to use for the weekend. Alec was sitting in his jogger bawling because it was his bedtime and I hadn’t had time to get his meds yet. Some friends of Paul’s (my b-i-l) offered to take Alec for a walk to try and settle him down. They hadn’t even walked 1/8 of a mile before Alec was settled down and he was sleeping by the time they got back to our camper. Thanks Mark and Paula!! It is so nice to have someone offer to do something with Alec as it so rarely happens. It is so much appreciated.

I took my first quiz for school before we left and I took the next one last night. I got 100% on the first quiz! I am taking a Medical Terminology class. It hasn’t been too bad because I have a good memory and I have already have been exposed to most of the lingo! I have been trying to work ahead because of our Colorado vacation, plus when the final is due we are also on vacation at Osakis. The course is scheduled to be finished Aug 3, but I would like to be done mid July.

We have been teaching Aaron how to ride his bike without his training wheels. He is actually doing pretty well. He can ride fine and now we are working on starting and stopping.

Alec isn’t doing too badly. The augmentin is ripping his guts up as usual. He is still junky sounding, although not as bad. We haven’t really had to suction him as he has been clearing things ok coughing. We have been giving 2 vest treatments a day. We are on the Lyrica and it actually seems to be doing a pretty good job. I do think that it may be contributing a bit to his junkiness (is that even a word??) as it is a drug that is somewhat similar to nortriptyline. I am kind of holding out to see how he is going to be once we are done with the antibiotic. However, I am adjusting his robinal hoping that may help too. His seizures have been pretty few, probably the best they have even been in his life, knock on wood!

Please pray for Rebekah who is in the hospital, Patrick who has been having seizure issues and his parents are going to be leaving for the UMDF conference in a week, and for Jacob who a prayer vigil is being held for currently (fl/jacob).

Take care and may you all have a wonderful day!!!

Stephanie and Crew

Wednesday, May 31, 2006 3:19 PM CDT

We got Alec’s mitochondrial DNA genome test back from Baylor. There is one mutation on a gene right next to a gene that causes Lebers Hereditary Optic Neuropathy. And the rest of the test results are classified as Polymorphisms. I believe there are around 20?? I haven’t taken the time to try and understand it. Baylor wants a sample of my blood to compare it. It would be nice to know exactly, but it still goes back to knowing is not going to change Alec or the way he is treated.

Alec’s developmental dr called me yesterday. He is working on trying to get SD Medicaid to cover our expenses to go down and see Dr Shoffner. I have to get on the horn and contact Alec’s primary and the Neurogeneticist at Mayo to have both of them write letters to insurance and the state.

I picked up our van on Friday! Yeah!! I am so glad to have it back. It is so much easier with loading and unloading Alec.

Alec started getting sick on Friday with the same stuff as usual. Gunky sounding, coughing, etc. We bumped up the neb treatments and were giving him his vibrating vest treatments twice a day. Yesterday after Jen (nurse) gave him a neb the wheezing went away. Turk and Jen brought him into the dr today and we are starting on antibiotics (augmentin). He has been quite crabby and having more “smaller” seizures than normal. We are almost done with the zonagran and we started on the lyrica (both seizure meds) on Friday. I have been giving extra clonazepam because of the irritability. He also only pooped once in 8 days. Yesterday he had a small poop and today he had a big blowout at the drs office. I had started him back on Miralax to get his bowels moving, but we should soon be able to stop that as the diarrhea will be coming with the augmentin. Vicious, vicious cycle!! I know, I know…..I need to get an appt with Shapiro. One of you email me his number, I will set it up in Sept when we are up towards St Paul!

We are looking forward to some better days once we can get back on track. Dr DeHaan wanted to know why we are changing his seizure meds around. Brad told him it was all me! It is too. Why am I doing this now??? I should be waiting until August after we are done with all of our vacations and camping!!! I may throw in the towel on the Lyrica here in a week or so if things aren’t improving. I always have that little thought of, well, it might help!!

Not too much else to report from our household. May you all have a wonderful week!!

Wednesday, May 24, 2006 11:04 AM CDT

It has been a nightmare on Tiger street for sleep since Sunday. We were up with Alec with him crying and seizing from 2am-6pm Monday morning. He would start to settle down or be almost asleep again and then he would have a seizure and cry and cry and cry. Tuesday am he was up at 4, thank goodness there was not much crying and seizing. This morning we woke up to him crying at 5:15. Turns out it was due to having a bloody nose! That took 25 minutes or so to stop. Why Turk and I ever laid back down in bed again after that is beyond me. Stupid, because now I feel more tired!

We have been decreasing the zonagran and will be off of that soon and starting the Lyrica, unless Turk and I decide to put Alec back on the same combination of meds he was on before for seizures, clonazepam, topamax, zonogran, and the dreaded felbatol. We have got to spend some time together and figure this out!!

Alec’s IFSP meeting went fine. We are going to continue with the same therapies he is getting. We are going to be getting him a jellybean switch and we can mount on his kid kart. The switch will be nice to have when we go to Colorado, although I am sure that the constant toy noise might be enough to drive Turk over the edge! Me, I can just knit away and tune everyone else out!

We talked a lot about Alec’s transition out of the birth to 3 program once he is three. The school district is giving us the option of if we want to send Alec to Harrisburg Elementary or if we want him to go to CCHS. Turk and I are planning on visiting both facilities in the fall so we can make an informed decision. We can basically plan the whole transition ourselves, ie, frequency, location, am or pm, etc. As of right now we are thinking of sending him 3 days a week in the morning, we just aren’t sure where. We are also thinking that if we send him to CCHS, then as Alec gets older we would try to transition him more into the school. Should Alec be 5 Turk and I are possibly thinking that maybe 1 or 2 days at CCHS and then 2-3 days at school. But that is way in the future. We will just worry about getting him to 3!

Thursday, May 18, 2006 2:40 PM CDT

Alec’s appt went pretty good. We are taking him off of his inhaler and replacing that with Pulmicort nebs twice daily. The dr also wrote me a prescription for a portable nebulizer, which will be awesome. We will get one that will be battery operated and it will be able to give neb treatments in 5-7 minutes. The one we currently have takes 15 minutes usually. We were told not to get any cats or dogs for pets!

Alec has been unusually crabby. I am pretty sure it is from the zonagran (seizure med) increase. We are supposed to start week three of the 4 week increase tonight. I had Jen take him in the see his primary dr today just to make sure nothing else was going on, which it wasn’t. They are drawing a bicarb and zonagram level. I already put my call in to the neuro in St Paul. When we began this change I was told to call if Alec got too sleepy. It seems as if this increase is causing an exact opposite reaction. I am pretty positive that Alec is crabby due to lack of sleep. When he is awake at times it seems as though he is on speed. All he wants to do is stand up and look all over. I am sure that if he could walk or run there would be holes burned into our carpet.

We went to a graduation party last night. It is hard to believe that two years have past since my middle youngest brother graduated. I remember sitting at that ceremony crying because I knew that I would never see Alec walk across stage and I would never see his graduation. This was before anyone would tell us anything about Alec’s future. All of the drs said “Wait and See”. Makes me get tears in my eyes thinking of that graduation day and then a couple weeks later when we were finally told that Alec would probably never talk, most likely wouldn’t walk, and won’t make it past his teen years.

I know that I will always have my days where I grieve for what should have been or what could have been, but I refuse to let it consume me when I know that the Lord’s reason for giving us our angel Alec was to bring our family closer to Him. How blessed we are with being given a perfect soul to teach us how to not sweat the small stuff, live for the moment, rejoice in each day given, and feel the love that envelopes our family. I am so fortunate for Aaron, for I see the love of the Lord through him more than anyone I know or have even known. My boys have a brotherly bond that will never be broken and will teach volumes should you ever be silent enough to listen. It is sad to know that they can never play together like “normal” children and won’t be attending high school together or wrestling together. But I can guarantee that Alec will be the first one to greet Aaron in heaven when he goes. They will then have an eternity to play together, wrestle together, laugh together. And I know the love Aaron and Alec feel for each other now will be even greater in the Lord’s presence. God’s plan is so great.

Wednesday, May 17, 2006 2:48 PM CDT

Our van should be back to us within a week! Yeah!! I can’t wait. It has been so nice since Mobility gave us a 2006 Dodge with in in-floor ramp to borrow after the sold the first vehicle they had loaned us. It makes me want ours back soon!

Yesterday Aaron brought home a baby bunny rabbit that had crawled into Roxie’s (daycare) watering can. Everything was fun and fine until Aaron tried to give it a carrot to eat and then it ran out of our yard. Aaron cried and cried! We took Alec’s new jogger out for a spin last night while Turk mowed the yard. I love it and can’t wait to take it out camping.

Yesterday I had a rude person call our house and talk to our part time nurse Kelly and then called me on my cell phone. They were calling from Hillrom, the vest company that Alec’s vibrating vest is through. After listening to this rude person proceed to tell me that my son absolutely needed 2 20 minute vest treatments a day so that he will never cough again, have a respiratory infection again, and be able to breathe well and run around happy and healthy, I became very fired up. During the course of the conversation I could barely get two words in between her ranting and raving about what we were doing wrong and what we needed to do. I didn’t even say anything at the end of the conversation because if I had she probably would have had to notify the St Paul (where the company is located) police department for protection. After my rage settled to anger I logged onto their website and wrote a nasty email. They called today and left a message on our machine. Jen, our full time nurse, didn’t answer the phone because she didn’t want to deal with them. Kelly, had called Jen yesterday about them!! It appears as though things are now taken care of and Alec’s prescription is actually for a minimum 10 minutes to maximum 40 minutes of vest treatment daily.

Jen brought Alec into the dentist today because we thought that a tooth was infected. He has had horrible breath lately. The dentist said that things were fine and that the bad breath was just dead tissue. Lovely thought! We are going to up the tooth brushings for that boy and clean that out!!

Tomorrow we go and see the Allergy dr again. I will post tomorrow late am or early pm on how that all goes. Friday is Alec’s IFSP. We are going to start discussing what is going to happen when Alec turns 3 and then goes to school. I am interested to see if the Harrisburg School District thinks that they can handle Alec or if they feel he should go to CCHS.

Please pray for Alex Bindert and his family. www.alexbindert.org
He has a brain tumor and was given a week or so to live a little over 5 weeks ago.

Friday, May 12, 2006 3:18 PM CDT

The development dr didn’t do too much. I have to make some phone calls and get some letters written about Atlanta. I need to get them for the insurance company and for SD Medicaid. I really don’t have the energy, but I am going to work on getting in done so we can forget about doctors until Sept because that is when our next appt is scheduled for. We talked a bit about how Aaron plays such a big part in Alec’s life and about what a special bond they share. Aaron loves to snuggle up to Alec in bed on the same pillow.

I got home Wed and there was a msg on the machine confirming our appt with the eye dr on Thurs. I thought it was next week! But we made it despite the other appt yesterday. No need for Alec to be in glasses because his eyes are getting better!!

Alec was being naughty last night. He fell asleep at my in-laws and then woke up on the way home. At 10pm Aaron was complaining that Alec was keeping him up, and Alec was scolded but that didn’t stop him! Aaron finally pulled his blanket over his head and fell asleep, but Alec continued to try to wake him up. Brad went into their bedroom and gave Alec another talking to. Alec was quiet and listened while Brad was talking to him. After that Alec turned his head right toward Aaron and started blabbing away again! Typical two year old!!

Tuesday, May 9, 2006 2:38 PM CDT

What a fun weekend. Friday night we went to Chuck E Cheese. (Thanks Sue for the gift certificates! They were put to good use!) The boys had a good time. Alec even rode the Barney ride on in the toddler zone!

Saturday we went and picked up the camper in the morning and spent the rest of the morning and afternoon cleaning it out and packing it up. We are so excited to get out!! I don’t think time will permit us to get out before June, but June is not too far away. Saturday afternoon and evening we got to spend with our friends, Tony and Stephanie, and their family. The boys went fishing, and us girls, and Alec (our ladies man) went to Pizza Ranch in Brandon. It was nice to see them as we haven’t been able to get together since December.

Sunday was my youngest brother’s confirmation, so we had a great meal at my moms and dads. After that we brought our camper back out to Humboldt storage, I mean Donnie and Patti’s house…….

We then went over to Turk’s brother’s house for supper and fun. My sister-in-law and I even got some scrapbooking in!

The seizures are still around. I have not seen any zonagran improvement yet. Last night the boys and I went on a bike ride. Everything went without incident until our last little stretch. I had Alec hooked up to my bike in his trailer and Aaron was on his bike. All of the sudden Aaron tells me he is going on the sidewalk and while saying this he cuts right in front of me. I slammed on the brakes, fell off of my bike and knocked Aaron off of his. Thank goodness I had my chubby 2 year old in the trailer to stabilize me or I would have been hurt much worse!

I emailed many of you a link to www.tystrot.com. For any of you I missed, you should go check out the news videos. Very awesome. The part that got me the most was Ty’s parents talking about how Max (their oldest son) was going to have to experience the death of his younger brother. Very sad and made me think of Aaron. Just yesterday on the way home from daycare we were listening to a Christian radio station, to “You Raise Me Up” and Aaron burst out in tears because he didn’t want Alec to die. Made me cry.

Alec’s allergy dr called today. Apparently he has gone over labwork, and he says it is time to see Alec again. The receptionist told me that it was nothing bad, but that the dr needed to see us again. Weird. That appt is next Thur the 18th.

Mobility called and our van is almost finished. It may ship back to SD from AZ either Friday or early next week. Yeah! I can’t wait!! Praise God!!!

May you all have a blessed day!!

Friday, May 5, 2006 11:51 AM CDT

Alec seizures have been increasing. Today we are finally done with the felbatol. I hate that drug. I hope we never have to use it again. I spoke with the neuro late yesterday afternoon about what we want to do about Alec’s seizures. The plan as of now is to increase the zonagran. If that helps he needs to come off of the topamax because of an increased risk for kidney stones. Scary if we do need to get off of the topamax because it has been the only drug we have used that has seemed to have helped the seizures. If the zonagran increase does not help, we are going to start Lyrica.

His tone seems to have increased also, but he is not sleep as well and is having around 20-30 “big” seizures daily. By big, I mean the myoclonic ones that are lasting 5-15 seconds.

On an interesting note, Alec’s gene sequencing test for complex iv came back normal. The entire mtDNA sequencing probably won’t be back for a few more months so I will be interested to see what turns out with that. I find it puzzling that the complex iv came back normal when his lab results of the biopsy were 21 (out of 100, 100 being normal). It makes me wonder if the mess up with the muscle between Mayo, Buffalo, and Baylor, if one of them did not screw Alec’s muscle up with another childs, because both of the biopsies were sent off together and both mailed all over the country.

On Monday night Aaron was messing with Alec’s feet. Turns out he was cleaning out all of the sock fuzz and junk out of Alec’s toes. I asked Aaron what he was doing and he informed me that he was cleaning Alec’s toes because he (Aaron) didn’t like to have dirty toes so he didn’t think Alec should either. I hope that Aaron is willing to come and clean my toes when I am in the nursing home!

Tonight we are going to Chuck E Cheese for my niece, Alyssa’s, birthday. It should be a fun time.

Have a wonderful weekend……………….

Monday, May 1, 2006 1:34 PM CDT

UPDATE 3:30 PM:
Alec's IgG level wa 764 (normal) and his allergy test was positive for cat, dog, cow milk (all class III) and soy milk (class II).

I have not heard back on Alec’s allergy tests. I called into the office once already today and will be calling back if I have not been called by 2pm.

Alec’s teeth: Wow! We pumped in the Motrin and Tylenol for a couple of days and he didn’t seem to be in too much pain. We still haven’t brushed them, just been using the toothettes. He has been in such a great mood. So happy and full of smiles. I really think that getting the pressure off of those teeth have made such a difference! I am so glad that we did this as apprehensive about the procedure we were.

Therapies have been going pretty well. We are working on getting him a switch. The OT suggested a jellybean switch for him to use with his head. I would like to get things in place and get some toys converted for him to take along to Colorado this June. We have his next IFSP meeting on the 19th.

Turk and I got away on Saturday. Of course we spent Friday night doing our typical arguing before going away. We can never plan any trips without fighting while we are getting ready to go. Maybe someday I’ll mature so we don’t do that anymore! The boys went down to my parents’ farm for the day and night.

I was planning on going back to the hotel and scrapbooking while Turk was playing in his poker tourney at the casino. That didn’t happen because my mother in law won a progressive jackpot on a penny machine. So we all celebrated instead!! I did get some scrapbooking done yesterday however; I am never getting photos developed at Sams again. The photo kept rubbing off of the picture every time I would cut. I tried a couple of different cutters, but both did the same thing. Irritating! If anyone has any other photo cropping suggestions, please email me!!

My parents stopped by our house on Sat to pick up Aaron’s rain boots and coats for the boys for the rugby game they were attending. After they got what was needed they were all in the van and one of my parents says to the other, “Crap, we forgot the shut the garage door.” Aaron informed “Don’t worry, when we get to the street it will close by itself.”

Wednesday, April 26, 2006 4:19 PM CDT

Aaron was trying to con Turk and me last night. I told him to get his blanket and go to bed. While I was getting Alec ready (thinking Aaron was in bed), Aaron ran into the bathroom in our bedroom where Turk was showering. While in the bathroom he asked Turk if he could have a popsicle and Turk told him that was fine. 1st warning sign that Brad should have seen: “Dad, I will just stay in here with you until you are done.” Needless to say there was no popsicle and Aaron went to bed bawling. I feel like “Mean Mom” as I am always the one yelling and nagging at Aaron, while Brad gets to come home and be the “Savior”. Turk can start laying the smack down now that he says he is not going to be working any more weekends.

The allergy appt was a waste of time. We did some labs and I also had them draw for IgG levels. I will be interested to see what occurs once the labs get back. I am thinking we may have to see Dr Shapiro in Sept.

Today’s appt went well once we got the front office straightened out. After we had already been there around 20 minutes, they called us back and informed us that they had not received the preauthorization back from Medicaid and they felt it in “our best interest” that we should wait and have the procedure rescheduled. Dr Jekyll then turned to Mrs. Hyde and asked why they didn’t have it when this appt had been scheduled for quite some time. So I then told the front desk that the procedure would be done today and to give me the phone number to the Medicaid office. The gal that was helping us buzzed another gal. After a few minutes the gal from the back came and informed us that it was our lucky day and we now had the preauthorization. Mrs Hyde was then able to change hats. The gal in the front that was helping us must have seen red in my eyes because she took off as soon as the gal from the back came out.

The actual procedure was quick and went very well. Alec was a tough guy and handled things ok. He received a bunch of shots of novocain and then the dentist cauterized the gums. The bleeding was minimal and what he did swallow we drained out of the gtube. We are going to pump in the Tylenol and Motrin. I was impressed and please with the entire thing. It probably lasted 10 minutes. They ended up doing 12 teeth. Two of the back molars were questionable, but since he was in there he just went ahead and did it. We may have to go back in and redo them, but we will have to wait and see.

Thanks for the prayers!!!

Wednesday, April 26, 2006 4:17 PM CDT

Aaron was trying to con Turk and me last night. I told him to get his blanket and go to bed. While I was getting Alec ready (thinking Aaron was in bed), Aaron ran into the bathroom in our bedroom where Turk was showering. While in the bathroom he asked Turk if he could have a popsicle and Turk told him that was fine. 1st warning sign that Brad should have seen: “Dad, I will just stay in here with you until you are done.” Needless to say there was no popsicle and Aaron went to bed bawling. I feel like “Mean Mom” as I am always the one yelling and nagging at Aaron, while Brad gets to come home and be the “Savior”. Turk can start laying the smack down now that he says he is not going to be working any more weekends.

The allergy appt was a waste of time. We did some labs and I also had them draw for IgG levels. I will be interested to see what occurs once the labs get back. I am thinking we may have to see Dr Shapiro in Sept.

Today’s appt went well once we got the front office straightened out. After we had already been there around 20 minutes, they called us back and informed us that they had not received the preauthorization back from Medicaid and they felt it in “our best interest” that we should wait and have the procedure rescheduled. Dr Jekyll then turned to Mrs. Hyde and asked why they didn’t have it when this appt had been scheduled for quite some time. So I then told the front desk that the procedure would be done today and to give me the phone number to the Medicaid office. The gal that was helping us buzzed another gal. After a few minutes the gal from the back came and informed us that it was our lucky day and we now had the preauthorization. Mrs Hyde was then able to change hats. The gal at the front desk must have seen red in my eyes as she took off as soon as the gal from the back came out.

The actual procedure was quick and went very well. Alec was a tough guy and handled things ok. He received a bunch of shots of novocain and then the dentist cauterized the gums. The bleeding was minimal and what he did swallow we drained out of the gtube. We are going to pump in the Tylenol and Motrin. I was impressed and please with the entire thing. It probably lasted 10 minutes. They ended up doing 12 teeth. Two of the back molars were questionable, but since he was in there he just went ahead and did it. We may have to go back in and redo them, but we will have to wait and see.

Thanks for the prayers!!!

Tuesday, April 25, 2006 12:27 AM CDT

The circus Thurs night was a blast! I will have to get some pictures up on here. Alec and Aaron both loved it, but by the end of the circus both were crying and disgruntled.

Not too much went on over the weekend. Brad worked the entire time. I actually got out a little bit and scrapbooked with my sister-in-law and one of her friends Friday night. I took Alec with me and Aaron went and played at his cousin’s house.

Today we are going in to see the allergy dr. I am interested to see what happens with that appt. I will be sure to post tomorrow and let you know.

Alec gets his gums cut tomorrow at 11:20, so say some prayers that things go smoothly for him.

Thanks…..

Wednesday, April 19, 2006 5:32 PM CDT

Last Friday was a busy day. We were up bright and early for Alec’s CF test (which did come back negative – no surprise as I figured that was going to be the case). He was put into a room that had the heat turned up so that he could sweat sufficiently after his glands were stimulated. They then put a couple of blankets out of the warmer on him. He sweat more than enough and I don’t think he could get back to a regulated temperature for the rest of the day.

We then had our training on the new vibrating vest. Alec is supposed to be in it for 20 minutes twice a day. I also saw on the orders that Alec has a new diagnosis from the Intensivist, Dr Reynolds from McKennan “congenital quadriplegia”. I guess I wasn’t aware that all 4 of Alec’s limbs were paralyzed. Interesting stuff.

Alec does seem to like the vest and is tolerated the full 20 minutes most of the time. He likes to vocalize a lot while he is in it. I think he likes the sound of his voice vibrating!

Friday night we went out to my parents’ house. I took Alec outside in the sand pile for a little while and he loved it. My mom got some pictures so I will post them when she emails them to me (hint, hint).

Saturday we got to dye Easter eggs again at Turk’s parents’ house. The boys had a blast. Sunday Alec woke up to a bubble making machine and a huge balloon bouquet. Aaron got a motorized ride on that the Easter Bunny is working OT for! The good thing about the 4-wheeler that Aaron got is that the weight limit on it is 130 so he should be able to drive it to high school. We were running around to the Grandma’s and Grandpa’s and of course the boys were very spoiled with clothes, candy, books, and toys. Aaron thoroughly enjoyed the Easter Egg hunt and Grandma Patty’s and Grandpa Donnie’s. He is a pretty good little hunter. Aaron said to his cousin Caden, “Caden, we need to look high and look low.” Alec didn’t hunt eggs at all because he was feeling a little under the weather. He has been having a lot of snot drainage. But next year the race it on! Especially if he gets a jogger like his friend Wyatt!

Yesterday we had a spasticity clinic appointment at CCHS. Nothing new to report. She wants to do hip x-rays to get a baseline, but I have no idea when this is to be scheduled. I am not too concerned because we are going to spasticity clinic at Gillette in September. We have to get Alec the next size bath chair as he is growing so much.

Tonight Alec is at the pool probably walking across the pool as he has been the past few weeks. Hard to believe since he is paralyzed!! HAHA! We are excited for tomorrow night as we have front row balcony seats for the circus!! Yea!!!

Have a great night!
Stephanie and Munchkins

Thursday, April 13, 2006 3:04 PM CDT

Alec’s dr appt with Dr DeHaan went fine yesterday. The spot on his right lung is much improved and barely there. We got a prescription of Flagyl for his c-diff and talked about his teeth. I spoke with Alec’s dentist this morning and we are going to open up his gums. It was the great debate to decide to do general or local anesthesia. The dentist thinks that we will be okay with doing local. I really didn’t want to put him out and suffer the consequences of recovery. Alec has 10 teeth coming in. I hope that this procedure is quick. We are planning on having that done on the 26th of April. I know that Alec will feel much better.

The boys and I went to my Aunt Diane’s house last night so she could work with Alec’s bike trailer. CCHS put in a chest belt for him, but we were having some issues with his head not being able to go back far enough. Diane was able to remove one black belt attached to the mesh head area and I believe it is going to work. We have to get the tires inflated tonight once I get home and then Aaron and I are going to take Alec out on a “test drive”.

Tomorrow morning Alec has an appt at Sioux Valley at 7:45 am. I am going to have to bust my hump to get both kids out the door and ready by 7. They are going to be testing him for Cystic fibrosis. He has always had big white pore marks on his nose that when he sweats he forms hard salt like crystals on his nose. He has always been like this, but does it have anything to do with the topamax?? I don’t know. The sweat test is supposed to start at 8 and then we have almost 2 hours to kill before we go back. We do have friends in the hospital right now (Rebekah) so we might go visit her.

Our van is going out Monday morning and will be gone for 3-5 weeks. I am not planning on getting it back until May 22, but I would LOVE to have it back in 3 weeks. For those of you that don’t know the story, please read on. (Keep in mind that the Wed night before this I was at bible study feeling so overwhelmed with this house and van situation. I spoke of it being so hard to know what to do not knowing how long Alec was going to be with us, but things were getting to the point where it is becoming necessary to do. Before I left the church I was speaking to a friend of mine and she told me that she now knew what to pray for me and was going to pray for our house and van situation. I told her to pray for the van first because it was more of a priority). I was on my way to work last Thursday morning and for whatever reason, I called in and told them I was running some errands beforehand and would be in around 9am. So I drove over the interstate and went to Mobility Sales in Tea. We had an appt set up to go in on Tues March 28 (??) but Alec was in the hospital.

I talked to the gentleman that I had been working with and we decided that since Brad and I have 0% financing on our van to first pursue funding for the entire conversion of our vehicle to begin with and see what sort of money we could get from SD Family Support.

I did find out from another family that had gotten funding for a vehicle from Family Support that the fiscal year is up June 1 or July 1. It was my impression from this other family that we could then maybe get some funds once this new year was started or at least be budgeted in for the following somehow.

I emailed my family support caseworker in Pierre (his name is Ian) and he called me within an hour. He last day in his position was the next day. He was going to expedite my information to his supervisor and see what he could do. I got all of the information needed from him in case he was gone before a decision was made (which I figured was going to be) so I had a new contact. The new contact was an interim person, so I don’t even know who is actually going to be taking over for him.

Ian called me back by 2 pm and told me that I couldn’t have asked for funding at a better time, as they have leftover funds because their fiscal year ends May 31. So they were gong to pay the basic conversion package for our van, $17,000. WOW!!! The add ons on the quote I received would be $1,000 - $3,000 extra out of our pocket, plus transport costs.

So the gentleman at Mobility called me shortly after this and Ian decided to cover the entire conversion package $19,564.00! What a miracle!!!!!! And they want it done by May 31!!

So now our van needs to get shipped to Phoenix for 1 month to have the conversion done on it. That will be a little over $2,500.00 for the transportation their and back. As it stands right now Mobility Sales is going to supply us with transportation until our van is done and they were going to see what they would be able to do on the transportation costs to Phoenix and back. Right now it looks like we will have to pay ½ of it.

The salesman at Mobility Sales commented to me that he has never ever seen anything move this quickly. I told him it was a blessing and a miracle. I feel like such a weight has been lifted I can’t believe it. Was God watching over us or what!! Never underestimate the Lord because He can make ANYTHING possible.

BELIEVING IN HIM…..
Stephanie and Family

Wednesday, April 12, 2006 8:49 AM CDT

What a fun and exhausting weekend. ( I started this Monday and am now going to finish it!)

Friday night I was getting the boys ready to go into SF to get Aaron’s bike when my Aunt called and invited us to the Stampede hockey game. Alec definitely wants to be a hockey player! He talked the entire game. Towards the end he was getting a little bit fussy and I cradled him in to try to get him to sleep. Then he was all happy and wanted to watch! He loved all the music, fun, and excitement. Aaron was in hog heaven too and cried when he didn’t get a shirt thrown to him. Of course, I am pretty sure that was just a ploy to get Aunt Lisa to buy him one! Thanks Aunt Lisa for the spoiling! We had a wonderful night!!

Saturday we went shopping for a bit in the afternoon and then out to our friends’ house where Turk was working for the weekend re-roofing. It took me FOREVER to get out of the house. I started getting things ready at 9am and didn’t leave until 1pm! Long morning, but we were all showered and packed with essentials for the rest of the day. We had lots of fun at Heath and Monie’s house (our friends) as they have 2 boys also, who are almost 4 and 2. Alec enjoyed being outside. It is nice that he seems to be less “medically fragile” than when he was younger.

Sunday was church and another day of being gone. Turk worked all afternoon and the boys and I hung out at his parents’ house. Alec was crabby for most of it because he didn’t nap all weekend long (he did sleep in until after 9 today!). We watched Dreamer, Aaron’s new favorite movie, again and just relaxed.

Monday night was a family fun night out to the grocery store. Alec decided to show off and have a choking/vomiting episode. He shot flem and formula all over the pantyhose display. Then on the way home he proceeded to have another runny diaper that we didn’t know about until I put him on the couch after we got home. By then we had poop all over the couch, a big glob on the floor, and all over my hands and clothes.

He is still having occasional episodes that I think are related to c-diff from the augmentin. We go in today to see Dr DeHaan for a recheck of his chest x-ray from the hospital fiasco.

Last night after I picked Aaron up from daycare I asked him if he knew why we celebrated Easter. He told me it was because it was going to be summer. I told him it was because Jesus died on the cross for our sins so that we could go to heaven. Aaron: And then when we are all up in heaven Jesus will come back again. Me: Yeah (because it is so complicated to explain). Aaron: Wow, that is interesting.

Prayer requests:

My Grandpa: He is in the hospital with a pneumonia, but he is doing much better last I heard.

Bussa (?) Family: Pregnant after several miscarriages and now baby boy is in distress and may not survive.

Alex Bindert: Hospitalized with brain tumor and has been given not long to live.

Prayers of thanksgiving on our vehicle (it is being converted)

Rebekah who is in the hospital after g-tube surgery yesterday.

Have a wonderful day!

Stephanie

Thursday, April 6, 2006 4:38 PM CDT

What a past couple of weeks we have had.

First I will let you all know that Alec left the hospital last Thursday and we are glad we were not there long. I will never be going back to McKennan hospital if we can help it. I need to find out if our drs there have rights at SV otherwise I am going to have to switch our doctoring up to the cities (I am sure my friends up there at getting pumped up now!).

To make a long story short, we didn’t even have diapers that fit Alec the entire time we were there. The intensivist said upon admission that they would order the right diapers, get him in a tumble form chair, get a sheepskin for him, and an eggcrate bedcover (never saw any of them by the time we were discharged Thurs at 5). The intensivist wanted to get him started on antibiotics and wanted to do a zpack. I informed her that if it was an infection he needed to be on augmentin to take care of it because zithromax doesn’t work, we have already been down that road. Didn’t listen, and put him on a zpack because they would wait and see (like they wanted him to get c-diff!! grrrr). He went in with totally respiratory distress, but RT only came by twice that day 1pm and 8pm to do nebs. I told them that Alec needed a racemic epinephrine neb because he gets them every time he gets this way. Didn’t listen again, no epi neb. They also never put him on any steroids other than one comparable to his inhaler that he already gets every day. The first night there his sats went down into the 80s 3 times between 3-4am and the nurse never came in once to check on him. I finally called her in a 4 to have her call RT because he needed a neb treatment. And these beefs are just the tip of the iceburg. Never again at McKennan!!!

I brought Alec in the see Dr DeHaan last Friday. He did a white count on Alec, because the only paperwork that he had gotten from McKennan was the discharge summary with the diagnosis of “viral infection”. Viral my butt! Alec white count was elevated and I am sure that they “spot” on his lung was pneumonia. So Dr DeHaan put him on augmentin and gave up a script for xopanex (which we were supposed to have been given before discharge). Now I think we are doing much better!

I got probably what Alec had and have been sick since Sat. I finally have my voice back and am back to work. And Aaron also got it so we have 3 people in our household on antibiotics. Thankfully, Turk has been healthy or as he claims “Sickness is scared of me”.

Alec has been doing excellent in the pool. They have been weighting down his ankles and he has been walking back and forth across the pool in the shallow end. It has been fun to see. We are anxiously awaiting being able to get out and bike. Alec should have his bike trailer head ready in the next couple of weeks. Aaron is buying a new “hot wheel” bike with his birthday money and he is getting excited about that.

We have an appt every week until May 17 so we will be busy running. We are seeing an allergist, physiatrist, getting a wheelchair adjustment (again!), developmental dr, and opthamologist. Summer will be here before we know it!!!

Thursday, March 30, 2006 5:47 PM CST

I have been sicker than a dog since Sat. I will update when I can and when I have time.

Stephanie

Thursday, March 30, 2006 10:37 AM CST

New # 605-322-3606.

Please pray that we get out of the hospital today. My soul feels so much unrest because it is not right.

Will update more when I can.

Wednesday, March 29, 2006 10:30 AM CST

Alec has a spot in his lung, however, they think his respiratory problems are viral. He also has thrush. We get to spend another night in the hospital. I can't update from the hospital (I am dictating to mom!!). My room number in ICU is 605-322-3605. Feel free to call and I'll have mom update if I can.

Tuesday, March 28, 2006 11:05 AM CST

Alec is in McKennan peds ICU with respiratory issues. He seems stable and I will update when I can. Keep us in your prayers.

Tuesday, March 21, 2006 11:03 AM CST

Sunday morning Alec woke up at 5:45 fussing and crabbing. It progressively got worse until he was crying about 8:45. He had big tears rolling down his face. Poor little pumpkin. He puked up his entire 9am feed. We gave him motrin and over the course of the day he seemed to improve, although we only gave him ½ strength all day.

We changed his formula back to the Neocate, so no more good sleep after 2am! I am going to have to call the GI and let him know. Maybe he can devise a better feeding schedule.

Yesterday Alec seemed to do fine. His therapists brought over some sort of walker. I am not sure if it was a gait trainer or not, but Alec used it during therapy and was so pumped up to be upright. He was actually trying to walk! I wish that I would have been there to see it, but I am going to have his nurse video for me next week.

Not too much else is new. I have to begin formulating a plan on getting us a van. I am having Alec and Jen (his nurse) transported by Wheelchair Express now. He is going in today to get a bicarb level done (blood draw). I am hoping to utilize this option more often, as it save me on time off of work.

Please pray for Skye’s family. Skye passed away Saturday and I believe that the funeral is today. Her site is password protected so I can’t provide a link, but I do know that this family definitely needs prayers.

Turk and I were talking the other night about prayer and if our prayers were more on the end of “making a deal” with God or prayers of adoration. I believe one word can sum up our prayers to God, Thanksgiving. We are so thankful for the two beautiful children God has placed in our lives and for the miracles they both are. I truly know that God’s will is being done in our lives. I can’t imagine what different people Brad and I would be or what our family would be like without having to go through the pain and torment of watching your child suffer. How grateful we are that God has provided a good quality of life for Alec compared to 1 year ago. How grateful we are that Aaron has never portrayed any jealousy towards Alec, only compassion and love. How thankful we are the God has allowed Alec to come into our lives and make our family stronger, better, and closer to Him. I can’t praise God enough. I prayed for 2+ years for close friends. Since Alec was born I have been blessed with knowing some wonderful women as my friends. Every single one of these women has something in common; being the mother of a special needs child. God truly works in mysterious ways. Thank you, Lord. Your plan is and will be far better than I could have ever imagined.

God Bless,
Stephanie

Friday, March 17, 2006 9:47 AM CST

It has been a fairly uneventful week, which has been great!

Tuesday I ended up taking Alec with me to work because his nurse’s kids were sick. He did really well and we at the office for a little over 6 hours. Since I had him with me I called CCHS to see if he AFO’s were ready yet (he had been fitted the week before). It usually takes 10-14 days, and it was only 7, but they were ready to go! Last night we buzzed over to Stride Rite to get him a new pair of shoes. They are pretty sporty and even light up!

On Tuesday I also felt an eye tooth starting to pop through the gums. I should make an appt with the dentist since he is due to be seen in April, but I have been lazy. I like being able to just work and be at home and not running to appts every week.

Alec seems to be having more seizures this week. We did decrease the Topamax on Tues since his bicarb was at 18 (normal is 21), but I do not think that that has anything to do with his seizures. The increase started to occur after our appt at Gillette (go figure!). I speculate that it has to do with the formula change. There must be something in the Neocate that causes him to have fewer seizures. I am going to watch him over the weekend and then formulate a plan of attack. We will most likely have to go back to the neocate 1+, and if decreasing the Topamax is going to cause more we are going to have to figure out what to go with next. I would choose the Lyrica, but with the type of seizures Alec is having I almost wonder if going back to the Phenobarbital (which we have not been on in 2 yrs) would help. Guesswork, Guesswork.

Brad and I are celebrating our St Patty’s day tomorrow! He is in a poker tournament and we are going out. My in-laws are going to watch the kids and we can’t wait! I should start having Brad get in poker tourneys more often to see if he can win us some money for a new van with handicapped accessibility! I think anything handicapped accessible should be a standard feature on everything!

I actually have an organization I am meeting with today to discuss accessibility options and I am anxious to hear what they have to say.

Have a good weekend and don’t get pinched!

Monday, March 13, 2006 12:01 AM CST

Our trip to St Paul was fantastic. We were fortunate to get together with friends on Thurs night for dinner and fun. We also got to stay at one of my friend’s house, which was a true blessing. It is so nice to have a real kitchen when concocting meds and making formula.

The appt with Dr Wical went well. We have a new plan of attack, which is always good. From a seizure standpoint, Alec is actually doing very well. He had very few seizures the entire trip. I would venture to say 5-10, that I saw, and 10 would be high! Of course after we got home, he has had more of his hard seizures, but all in all, he is good on the whole. His seizures seemed to have changed and he is not having hardly any of the spasms anymore, if any at all! What a true miracle!! But of course, the seizure types are changing. They are more like the myoclonic jerks that he had when he was a newborn. (Off subject, I can’t believe that my baby is 2!! Where has the time gone!!). He actually is having them last around 10-15 seconds now, so they are getting longer and a little more severe.

Alec’s spasticity was a big concern of mine, along with having a baseline check on his hips and spine. We go back in Sept to see Dr Wical and also to be seen in spasticity clinic.

Our plan of attack is:

1. Increase the nortriptyline. It had not been increased since Sept of 05 and Alec had gained over 3 kilos! We are also giving it at night with his melatonin to help him fall asleep better. If this does not help, we are going to double his melatonin dose.

2. We just increase the oral (gtube) baclofen, so we are going to wait and see if his tone problems persist over the next week or not. If they do, we are going to start a new drug called Lyrica. It is supposed to help seizures.

3. If the tone gets better, we are going to take him off of the felbatol (Yea!!!!). This decrease should take 5 weeks once started (and he is only on 1ml! 5ml is a tsp)

4. When we feel like things are going okay, we can start Alec back on the mito cocktail. We are first going to add in carnatine when we do start.

5. Alec’s zonagran can also be increased if we feel it is needed. He is on a 1/3 of the highest dose he can be on for his weight.

I wouldn’t mind either putting him on the Lyrica or increase the zonagran, but I also don’t want him totally out of it on the zonagran. We had blood drawn for levels of the Topamax and zonagran, so I will wait and see what Gillette has to say about that when they call.

We also got blood drawn and sent down to Baylor. I guess they are running a new genome test. I am not sure what exactly is done, but Dr Wical is having them check for gene defects on the mtDNA respiratory chain since that is where the previous muscle biopsy indicated some issues. I should have asked more questions about it, but I will once the results are in.

No new developments on Atlanta. I have an appt to have our vehicle and house evaluate for accessibility.

The weekend was fun. I picked up Alec and Aaron’s 2 yr and 4 yr pics on Friday night on my way home. They are too cute!! I will have to scan them in when I get a chance. Saturday we went to SD AAU wrestling and watched our nephews wrestle. Austin got 1st and is headed to state and Caden got 4th. Saturday night we went out to eat at Ruby Tuesday’s for supper and then headed to the rodeo to watch Nelly rope. Aaron had a blast and Alec did quite well considering all of his allergies and such. Alec slept through the last third and he got lots of snuggle time with all of the family! Yesterday afternoon was relaxing as both boys slept from 2-5. Alec actually slept from 12-5! What a bum! I got a lot of quality knitting time in (I should have been cleaning my house!!).

Last night we played Yahtzee. Aaron the little stinker blasted Turk and me. He got almost 500 points in one game. He hit 3 yahtzees. I have never seen that happen!! Rematch is on tonight!!

Wednesday, March 8, 2006 3:36 PM CST

I feel like I have telephone neck and swollen ear. I have been on the horn calling a bunch of different people today. I first called the Medicaid office to start talking with them about Shoffner’s office and how to get things paid for, etc. I am waiting on a call back from them.

I then talked to a salesman at Mobility Sales regarding a van with an in-floor ramp and different tie down options. He gave me the name of a person that works at the Dept of Human Services for the state. We talked for a bit on different things. We will be getting an assessment on our house and van. I told him that we are being screwed because we can’t get any money to modify a house if we build a new one, which makes no sense to me. Financially, building for us is our best option since that is what Brad’s profession is! He was going to pass me along more info on about that and maybe different types of loans we could take out.

I also ran to CCHS to look at Alec’s bike trailer. I have to order this head support thing online and then I think that we should be good to go, so I am excited about that.

I also was on the phone for 40 minutes, was on hold, spoke to 7 different people, who all transferred me around. I am so mad I am near tears. I HATE dealing with insurance companies. If they would have listened to me in the first place and put us through to our case manager that we had before our case was “closed” then I wouldn’t have had all of these issues. I could just SCREAM!!! At least now I have an extension I can dial instead of being tossed around on hold from dept to dept. Frustrates me to no end. I hope that Medicaid can do something with reimbursing us or we are not going. It is not worth it when there is no cure or treatment available.

Brad took Alec to get casted for new AFO’s yesterday. I had him ask the seating team people that are working on it about it. The main guy I talk to all the time from this to wheelchair adjustments, etc told Turk that he was afraid of me. Turk’s response “Yeah, a lot of people are.”

Tuesday, March 7, 2006 1:45 PM CST

Today we didn’t have a nurse. Jen called early this am and her mom was in the hospital. She talked to Turk and he said something about it possibly being her heart. So say some prayers for Jen’s mom.

Turk stayed home with Alec today. They are actually at CCHS right now getting casted for new AFO’s. This will be Alec’s third pair! But the last pair lasted us 10 months, so these should last just as long if not longer.

Alec has been having some choking/vomiting issues. We have been trying to change his feeding schedule around so that we don’t have to get up at 2am every night and fill his feeding bag. The GI dr wants to change Alec’s formula from Neocate 1+ to Elecare. However, I called the Ross product info line and was told that the Elecare hang time was 4 hours, the same as the neocate. So I don’t see how this formula is going to alleviate the getting up at 2am issue. I called the GI dr back and told him what I found out. I am interested to hear back from them. Other than that, Alec has been extremely tight and rigid. We are increasing his baclofen up again.

We are going up to St Paul again on Friday for an appt with our neuro. I will be interested to see what see has to say overall, and if she has any suggestions for this spasticity issue. The developmental dr here in SF wants to put in a baclofen pump, but I am not totally sold on that idea.

Thursday, March 2, 2006 3:39 PM CST

I don't think that we will be going to Atlanta. As it stands right now we would have to pay at least $12,500.00. Are you kidding me? I can't believe that insurance would make us pay that much. Not feasible.

Things have been good the past couple of days. Brad and I have really been working at putting together a plan for the future (as much as we can plan!). I am enrolled to start school to finish my degree. I am hoping to start this fall, and possibly yet taking a correspondence course over the summer. But we have a lot of camping trips and vacations planned so we will see.

The boys have both been good. Aaron seems to over his sickness and has a cough remaining, but that is being controlled with some medicine. Alec has not gotten anything, which has been wonderful.

Tonight is my last class for knitting. The project I have been working on is socks. I have one done and I hope to start my 2nd sock tonight! ƒº

I want to leave you with a wonderful story. Let us all remember this Lenten season that Jesus also came down to suffer for us.

The Brave Little Soul
By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however, the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen, why is there suffering in the world?"

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in peoples hearts". The little soul was confused. "What do you mean", he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences, and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this-it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer-to unlock this love-to create this miracle-for the good of all humanity.

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into this world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.

God and the brave little soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.

Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys-some regained lost faith-many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives were changed forever. It was good. The world was a better place. The miracle had happened. God was pleased."

Monday, February 27, 2006 2:32 PM CST

SEE ABOVE FOR QUILT INFO

Last Monday I took Alec into the clinic to see his GI dr. Nothing much has changed other than Alec continuing to become a fat little toad. He gained 7 oz from Feb 3-Feb 20. He is now up to 14.35 kilos (31#9oz). I am in the process of trying to rearrange another feeding schedule for Alec so that we don’t have to get up at 2am anymore. I haven’t changed anything yet as he has been having episodes of choking I don’t feel like pushing his bolus feeds up from 155 to 170. I am not sure if the choking/gagging is coming from taking him off of the reglan or if he is getting sick. Aaron has been sick since last Wed. Yesterday was the first day that he hasn’t run a fever.

We had a video swallow study done on Thurs and Alec is the same as he was last year. I was glad to hear that because he hadn’t had a study done since Feb 05 and the fact that he hadn’t regressed was awesome. So we are back up to feeding him when he wants to eat orally.

The weekend was pretty low key. I got quite a bit of knitting done on Sat so that was a total plus!

Not much else to report from this end. This update was long overdue and I started it last Monday!

Stephanie

Thursday, February 16, 2006 11:50 AM CST

SEE ABOVE FOR QUILT INFO FOR ANYONE INTERESTED

What a week. Monday Turk dropped Aaron off at daycare and he started puking. Then I went home because I couldn’t stay off of the toilet. Aaron and I were confined to the basement to try to stay as far away from Alec as we could. Thankfully, no one else has been ill.

I had an interesting encounter with Aaron this past weekend. I was holding Alec and he comes up to us and says “My brother can’t walk” with his lower lip quivering. I, of course was not going to just let it drop since he was obviously sad about it.
ME: How does that make you feel?
A: Sad (At this point Aaron starts to cry)
ME: Why does that make you feel so sad?
A: Because my brother can never walk and play with me

Then he starts sobbing in my arms. And as a parent there is nothing you can do to take away his pain and nothing you can say that can make it better. It is one thing for me to grieve and come to terms with what I dreamed and hoped for will never be, but it is both amazing and depressing to me that my just 4 yr old is grieving the loss of his dreams and wishes for his brother also.

Monday, February 13, 2006 9:43 AM CST

Please read last journal entry about the quilt.

I got a call earlier that Aaron was puking at daycare. Brad should have him by now and he is going to be quarantiened downstairs. I am not feeling the hottest myself and have been on the toilet all morning.

Please pray for us all and that this bug passes by Alec. I will update more when I can.

Friday, February 10, 2006 12:41 AM CST

We took the kicksled out last night. I bungeed a car seat onto the kicksled seat so that Alec could sit supported. Alec seemed to like it a lot, but mom was huffing and puffing. We need to find a nice hill to go to!

I am posting an email from my Aunt Diane regarding a project for Alec. I wanted to let all of my CB family know in case any of you would be interested in participating. Just email me if you are. Thanks.

Now that Alec has his new big bed, we think that it would be fun to make a special quilt to cover it. For anyone that would like to share in the fun, we are planning to make the quilt using the bright primary colors of red, blue, orange, yellow, green, and purple. For those of you who make quilt squares, the design is up to you - kitties, puppies, trucks, trains, planes, frogs - any little boy theme would be great. For those of you who do not sew and still want to make a quilt square, I have purchased a blue material that I will cut into squares and I also have purchased some permanent fabric markers in the primary colors that you can use to design your quilt square - it can be as simple as tracing a child's hand on the square and putting his/her name on it or a square with your family's hand prints or names or even a special message. We would prefer that the squares be no bigger than 13 inches square (1/2 in seam allowance leaving a 12 in square to finish in the quilt. Any size 13 inches or smaller will work as I have multitudes to children's print material that I can add as a border to fit the square in. Please be sure to use good quality quilter's 100 % cotton material for your blocks or squares. Please be sure and use the permanent FABRIC markers when designing your blocks or squares. If you are from the Sioux Falls/Harrisburg area, we could try to set up a Saturday and/or Sunday date and times for an open house to come to my house (or another arranged location) to work on making the blocks. I will also give Stephanie material and markers to have available at her house also. If you want to try to sew a block, I am a very willing teacher. If you are from out of town, the blocks can be mailed to Stephanie or Diane. I will sew all the blocks into a quilt top and then a group of family and friends will gather to tie the quilt together. As you are making your quilt block, bless your square with a special prayer for Alec and his family. Let's make our special little angel, Alec, a bright and colorful quilt so that he will always be wrapped in wonderful prayers and warm thoughts of all of his family and friends.

Thursday, February 9, 2006 3:37 PM CST

I am so pumped! Alec’s kicksled arrived today! I can’t wait to get home and start working on it. We even got some snow today so we can maybe be out playing tonight yet.

Aaron’s birthday was fun. He had a great time swimming with Alec. We gave him a set of Spiderman PJs with matching slippers along with Toy Story. He slept in his new jams last night and he is dying to watch his movie.

Alec has been extremely relaxed lately. I haven’t quite confirmed what med it is, but we need to do some adjusting. He has been real smiley which is great fun because I haven’t seen smiles like this in a LONG time. I have been trying to capture the moments on camera, so I will have to post some new pics soon. Speaking of new pics, check out the one of Alec with his Aunt Pam. They were snuggled on the couch on Christmas and Alec fell asleep shortly after this picture was taken. Pam is Turk’s only sister and she has Downs.

Alec made it 3 for 3 last night. 3rd night in a row that we have had to vent him between 7-8 pm due to vomiting/retching/choking. I am interested to see what tonight brings. Last night there was a very miniscule amount of old blood that come back up, so I am hoping that this blood thing is over.

Love and Hugs,
Stephanie and Family

Wednesday, February 8, 2006 9:24 AM CST

Happy Birthday Aaron!

Aaron is 4 yrs old today. Oh how 4 yrs ago I never would have pictured my life how it is now. Heck, even 2 yrs ago!

Last night we experimented with paint and we made cupcakes. Tonight Aaron wants to swim with Alec during his pool therapy and then go home and have pancakes for supper. We were talking last night while we were making cupcakes and I said “Alec, should we sing to your brother tomorrow?” Aaron pipes up “you guys had better sing to me!” Brad and I actually wanted to go to Chuck E Cheese for pizza. Pancakes will be just as fattening!

Alec has been weird the last couple of days. He has been extremely junky sounding, even though we are on this robinal that is supposed to dry up his secretions. I also had to vent him due to coughing/retching/vomiting the last two evenings. And both nights he had bright red blood coming back up through tube. His nose has had some blood in it, but I would think that if it was coming from his nose it would have been old blood mixed with more mucus. We go and see his GI on the 20th so we will see. I am also supposed to be getting Alec’s records from Gillette by the end of this week after having to get mad to get this gal to finally get things done! I don’t know why everything has to be a fight.

Please continue to pray for Skye who is still struggling. Also for Zach and his circulation issues and Wyatt and his tremors.

We are going to be getting Alec’s new life jacket today and his kicksled shipped on the 6th. I am hoping that we maybe get it by Friday.

Praise God for Today!
Stephanie

Monday, February 6, 2006 3:04 PM CST

What a weekend. Friday I took the boys in for their 2yr and 4yr checks. Alec is great but has ear infection (in both ears) and was put on antibiotics for 10 days. Aaron is wonderful except for what the dr thinks is a recurrent folliculitis issue so he is on antibiotics for 2 wks. Alec was a stinker when he woke up from his nap Fri. I had to wake him up at 6pm because I wanted to sleep that night and all night after the he was acting sick. Let me tell you that he was not acting sick until the dr said he was!!

Saturday we went up to Madison and went swimming for the cousins’ pool party. It was great. Alec was mad when Turk made him sit up in the shallow end, so I brought him back out where he could stand and he was happy as a lark. He thinks he is so cool when he can be down with the other kids.

Super Bowl Sunday was spent at my mom’s for lunch and then we went to Turk’s cousin’s house for ½ of the game. I think that we all could have slept in until noon today! It will be early bedtime at our house tonight.

Today our new primary nurse started. Her name is Jen. I am sure there will be a little bit of an adjustment period as we get used to her and her to us, but I anticipate things to be good. Thanks for all of your prayers in that department.

Have a wonderful day!!

Stephanie

Friday, February 3, 2006 8:03 AM CST

Alec got his new bed and we love it! It is much easier lifting him in and out. And Aaron loves sleeping with him. They are too cute together.

We are off to the dr today for 2 yr and 4 yr checks. We then are stopping at CCHS for some AFO improvement, bike trailer modification, getting Alec's new therapy ball blown up and dropping off a car seat. We are also going to the grocery store. I am having a pampered chef party tonight. It is an open house from 5-7, so anyone that whats to come can.

Alec has been sounding a little more rattely (sp?) lately. Other than that he is doing well. Seizures seem to be decreasing (knock on wood).

Our weekend consists of a pool party, so we are looking forward to that.

Please pray for all of our caring bridge families that are struggling especially Skye and Zach.

Love to all,
Stephanie

Tuesday, January 31, 2006 4:07 PM CST

Today is a turning point in our house. We are getting rid of the crib. Turk and I dismantled Alec’s bedroom last night and the bed is going to be delivered tomorrow morning.

Alec may finally be through with this bout of sickness. Aaron is still struggling with a cough and I have been running a temp for the last couple of days. Turk is the only one who has stayed healthy thus far.

Last night we watched a movie on A&E, Flight 93. It was about United flight 93 that the passengers attempted to overtake on Sept 11. What a powerful presentation. I cried the last 20 minutes of the movie and probably at least 20 minutes after. Sun night we also watch a show on Sept 11 that focused on the WTC. I can’t even begin to imagine the emotions of being directly involved or affected by that tragic day. When I was in NY last April we went and saw where the trade towers were. I don’t know if I have told you all before, but it was like walking on hallowed ground. To imagine the pain and fear that occurred in the very spot that you stood. People falling from the sky, jumping to their deaths instead of burning to death in the building. People making their last phone calls to their loved ones, knowing they will never see tomorrow. I think anyone you talk to can remember what they were doing that morning. A day never to be forgotten. My heart was heavy then, and is heavy still now.

Monday, January 30, 2006 11:14 AM CST

So I get a call on Friday from Interim that they were sorry but they were not going to be able to fill the shifts on Tues and Wed of this week. Well, I informed the secretary lady that per my conversation with the Medicaid office that the shifts are required to be filled and they will be filled. The interim gal tells me that she will pass the message along (aka…tell Paul). So I then proceeded to call the Medicaid office and tell them the conversation. I am interested to see what tomorrow brings.

Alec seems to be getting over his crud. His seizures that were lasting about 15 seconds are now lasting around 7 (at least the ones that I have seen over the weekend). Who knows if it is the fact that he is finally getting better or if it is this new drug. When we talked about the zonagran back in Sept, the neuro in St Paul thought that Alec may respond ok to it because he had to the Topamax. The Zonagran and topamax are “cousin drugs” per the neuro. Time will tell.

The weekend was good. Friday the boys ran a couple of errands and hung out. Alec of course fell asleep when we were out and about. Aaron went down for a nap after we got home. We ended up having a game night with our neighbors and the neighbor boy came and stayed overnight. Aaron and Ty went to bed at midnight and were up at 6am. They did both go down for a nap from 1-5:30 when I woke them up!

Yesterday was the boys’ birthday party with the family. It was fun, but full and busy! The boys got lots of fun things. Aaron got his favs, power rangers and ninja turtles, and also some money that we are probably going to use towards a new bike. I think that he may actually be tall enough to be able to get a 16” bike. We will have to go to Toys r us and try out the demos. Alec’s favorite was his tumble time tigger. He was wide eyed watching it! Alec also got money we are going to use to get him a life jacket and a swim mat like they use in therapy. I found a website that has life jackets with the floatation device behind the head like the infant life vests, but it is for 30-50 lbs. They also have one for 50-90 lbs.

I am suffering from spring fever bad! I can’t wait to get out in the camper. Although I am ordering Alec a kicksled, so I hope that it does snow a least once more!

Have a good day!

Thursday, January 26, 2006 9:34 AM CST

Yesterday was another day of lost money due to Interim derelict management. Brad and I were waiting to go to work and no nurse shows up. I called at 7:15 and was told that on Alec’s schedule it was marked “Cancelled per Client”. Whatever! They put it down that way because the gal that they did have scheduled I did not want coming out to my house ever again because I was afraid she would kill Alec. So Interim didn’t even try to schedule anyone. I went in and talk to Paul, who runs the company, yesterday. I was told that I have spit our nurses faster than they can schedule them. What?? There have been two. And the last one I guess Interim felt that qualified nurses that gave your child the wrong medication, feed him wrong, and was a heavy smoker was good for Alec. During this meeting Paul proceeds to tell me that Interim was resigning from Alec’s case and that I would be receiving a letter in the mail today. What? He doesn’t even have the courtesy to call and tell me this? If I wouldn’t have gone in he wouldn’t have said a word. What a jerk. I will most definitely not be giving a good referral anyone needing nursing to contract with Interim. And likewise with nurses interested in home health care.

I then talked to the Medicaid office about this whole fiasco. I was told to call Paul and tell him that he had to cover the shifts out at our house. I was glad that I had already talked to him and I told Medicaid that his response to that was “I don’t know what to tell you Stephanie”. So Medicaid was going to call Universal Peds to see what they could get worked out for me. There was more to both of these conversations, but this is the jist of it.

Last night we did meet a nurse that works for Universal. Her name is Jen and I like her. I am hoping that things can get worked out soon and she can start soon. I was very impressed that she almost immediately washed her hands upon walking into our house and she also wanted a list of Alec’s meds so she could look them up and see how they interacted with each other.

I know that we have all been praying about this situation and I do believe that the answer to our prayers was for us to leave Interim. In my meeting with Paul he asked me if I was a religious person. I told him that I was and his response to me was “Now would be the time to start praying.” I told him I have had many people already praying for weeks and I walked out.

The unfortunate thing about Interim was that we loved 3 of their part time nurses. Hopefully they will apply at Universal and be able to fill shifts on the weeks that I work on Fridays and need 50 hrs of care.

Alec is still sick. Monday will be 3 weeks. Yesterday I thought he was better so I didn’t call about the Robinal, but today I am going to. Now Aaron has a cough and has been running a fever. To everybody I saw last weekend, I am praying that none of your kids get sick. I am stressing about it and would feel awful! So everybody pray that nobody else gets sick.

Alec’s new PT will be starting on Monday. I may have to jet home during that time to meet her. Please continue to pray for little Skye who is not doing well and will be earning her wings soon.

Love and Hugs (germ free of course!)
Stephanie and family.

Tuesday, January 24, 2006 8:08 PM CST

We are home.

We saw the ENT today and her response was to start using the robinal(sp) to try to clear up his secretions.

One new thing that we are starting is Zonagran. I don't think that I mentioned it yesterday. We are starting it tomorrow so that we should have a clear idea of whether or not it will help by March. We see the neuro in St Paul on the 10th of that month.

Our trip home was uneventful. Both boys slept part of the way and we came home to a wonderfully clean house. Thank you April! The house looks awesome!!

Until next time.....

Monday, January 23, 2006 6:41 PM CST

I am starting over because I just lost everything. Grrrr!

Today was a long day. Alec woke up at 4:30 and between getting up with Aaron and feedings it was a long night. All of us sleeping in one enclosed space is not good for us!

Our first appt was ID. He tested Alec for influenza and RSV, both of which we negative. We didn’t discuss much else other that we are going to test his immune system again next time we come.

Next was Pulm. From what I gather, he also thinks that the drs at the acute care in SF are idiots. He said that he would have never diagnosed pneumonia off of the xray from the beginning of Dec. His explanation for Alec’s secretions and mucus problem was that it was coming up from the airway and Alec can’t handle it the way a “typical” child would. Alec also has some thickened bronchial lining. We did a chest xray this morning which was fine. The pulm also checked his blood to see if he was acidic, which he was not. He was going to give the ENT a heads up for tomorrow, so we will see where we go next. Both the pulm and ID talked about giving Alec a med that starts with an R, I think, for him to take to dry up his secretions. If we did do that I would just want to take it when we need it, not longterm.

After that was the neuro. We are going to go to Atlanta and see Dr Shoffner as of now. She had actually spoken to him this morning about Alec and one of his people was going to contact us and get the ball rolling as far as all of the insurance bs goes. For those of you that don’t know, going down to Atlanta means we will be having a fresh muscle biopsy done. Per the Dr at Mayo, Dr Shoffner would be testing Alec also for Complex V because he feels it would be appropriate based on the fact that Alec fits the profile for a severe mitochondrial case. I also found out some interesting news regarding muscle biopsies. Mayo is now sending their frozen muscle to Atlanta to Shoffner to complete the testing. So if insurance stuff doesn’t pan out, we may consider doing another frozen one, but we will cross that bridge when/if we get there.

In between appts we all went back to the RMH and took naps. It was nice but not near long enough. Tomorrow will be another early morning and we will hopefully be heading home.

Many Blessings!
Stephanie

Sunday, January 22, 2006 7:56 PM CST

Alec's birthday on Thursday was fun. Aaron and I went and got him a cake and then Aaron picked out some balloons for him. Alec was crabby and didn't even open his gifts, but he did that the next day.

This weekend was fun and a well needed break. We just wish that Alec would have been feeling better. He is still coughing although we haven't had to vent him yet today. I ended up taking him into St Paul Children's Friday night after we got here. It was a pretty quick trip and Alec got some steroids, so maybe those are finally kicking in better. Going to Build a Bear was great! As soon as I can I will post pics. Alec made a soft fuzzy bear and Aaron built a Koala bear. Sat night was a blast to get together with some other mito families that we know. We are fortunate to know others who are going through similar things and that live so close.

Today we did get in to the RMH in Rochester. It worked out well because the had a community meal tonight. Both boys just got out of the tub and are off to bed soon. I hope to maybe get some knitting done! :)

I will update probably tomorrow night with how the appts go. We have three (ID, Pulm, Neuro). Have a good night and a good Monday.

Stephanie & Family

Wednesday, January 18, 2006 10:25 PM CST

Only a couple of more hours until our little one is two! Amazing and truly a blessing!

We spent Tues afternoon in the drs office. No outcome other than starting him on Omnicef. Knowing that we are going to Rochester for appts I did want to start augmentin and have it kill a sinus infection, if that is what it is.

We were fortunate enough to have Kelli come today and watch Alec. He slept until 9 and then napped from 1-5:30. I woke him up because I was starting to get worried from his breathing. He didn't tolerate his 6pm feed and then I dumped some pedialyte in. I then vented him because he kept coughing and choking. I finally just left him vented and I cannot believe the amount of snot that came out of his stomach. I would be sick too if I had that in there! I bet there was at least 80 ml.

I thought we were going to have to go to the ER for an epi neb, but after venting him and a neb treatment he sounded and looked much better. He is sleeping now with his night drip hooked up so we will see what that brings. Hopefully nothing because who wants to go to the hospital on your birthday (unless you are just being born!).

Please pray for Skye and her family as they are going to trying times right now. Pray for the Spaders because mom and dad are both sick currently. And pray for Eli's family. I just read on his website that Ann was awarded the Everyday hero Award from one of the news (?? I think) stations.

And please pray for us as all we want is to celebrate a great birthday weekend for Alec.

Love and Hope,
Turk, Stephanie, Aaron & Alec

Tuesday, January 17, 2006 12:32 AM CST

We will most likely be on our way to the ER shortly. Alec's respirations are varying 70-100 and he has been running a fever all morning.

I don't have a nurse today because I won't tolerate imbaciles taking care of my child. Please pray for that situation. I have Alec with me at the office right now.

Also we are supposed to take the boys to the cities this weekend. Pray that we may still be able to go and that Alec gets over this quickly.

We had a pretty good weekend. We took the boys to story time at Barnes & Noble and then got some new books. Saturday we took the boys to their first movie, Chicken Little. They were excellent. We had 2 potty breaks and one poop break.

Yesterday Brad took Alec in to the dr for a recheck from last Monday. The xrays of his sinuses and chest looked okay to them, but they never ran any blood counts which is what showed bacteria last week. So....we will see what today brings.

Friday, January 13, 2006 10:47 AM CST

Alec seems to be holding his own. He is not really better, but he isn’t getting a whole lot worse. His cough seems to be coming more frequently, but we will see what the weekend brings. He has been gagging on his snot drainage lately too. He has a follow up appt with Dr DeHaan on Monday. Meanwhile, I have an appt with the neurologist in St Paul scheduled in March. Alec’s seizures haven’t been awful (awful from OUR standpoint!) but they have not been ok. He has been having quite a bit, while other types thrown in there besides the spasm ones. The infantile spasms seem to be the most infrequent lately. I have a bad feeling that things are going to be totally out of control by March unless something is done. I am going to try to have some levels done next week and see what I should be increasing on. We have our Mayo appts coming up so maybe Dr Renaud will be able to shed some light or at least give a prescription for zonagran. I am glad that we are going up to Rochester since one of the drs there doesn’t think Alec has ever had sinus infection. But, he sure does have sinus drainage, so let’s figure out how to help it. I’ve said it before and I’ll say it again, the inhaler has helped quite a bit.

Swimming for Alec went great on Wednesday, and it didn’t even go for Aaron. I decided to pull him. He wouldn’t even go sit by his class. I have no idea what his bag it and it maddens me! What makes me most irritated is that he can do all of the prerequisites for the class to pass it, but he has decided he does not like his teacher. So I figure that I am going to hold off on letting him participate in other things for a while (which will be harder for me than him!). He was grounded from his cowboys boots for a week for peeing on the carpet (for the second time in a month) so I bribed him and told him that if he got in the water and listened to his teacher I would give them back to him and I was even going to buy him a cowboy shirt. I couldn’t believe that didn’t work! As I was telling the people that I was going to pull him from the class, he comes running up and is laughing about it! Grrrr. We went to Shopko afterwards and I asked him if he wanted to wrestle against other kids in wrestling meets and go to practice. He was all about doing that. So I tell him that the person that will teach him how to wrestle is going to be a guy. His response “But I like those kind of guys.” ???

This weekend should be low key for us. I have coerced Brad into making the toy shelves I have wanted for 3 years. Ragging on him didn’t do much good and all it took was me telling him to bring home the tools so that I could build them myself. We may try to take the boys to Story time at Barnes and Nobles and use up a couple of gift cards and we might try to take them boy to a movie. It could be interesting!

I have an appt today at 1:30 at Your Secret Kitchen. If the food is good and the portions are appropriate, I will be going there every month! For those of you who don’t know what it is, you choose your meal selections from their menu, make an appt and the go in and prepare your meals. They have the ingredients and storage all ready to go for you. Check it out online www.secretkitchenonline.com

Prayers of praise for the Spader Family. Rebekah had her NG tube pulled out and was able to come home!! Yeah!!!

Please pray for Skye and her family as she will be earning her wings soon.

Have a good day and hug and kiss your kids!
Stephanie

Monday, January 9, 2006 3:41 PM CST

UPDATE TUESDAY:
I took Alec into Acute Care last night. His counts showed a bacteria infection and the dr thinks that he is starting a bronchitis/pneumonia. We started a z pack.

The weekend was enjoyable. We didn’t do much of anything! We had lots of fun and relaxing family time. Friday night we just vegged out and hit the sack early. On Saturday Turk and Aaron went to the wrestling meet for a while and I took Alec in to SF to order his bedroom set. Sat night I scrapbooked with my neighbors. Sat night Alec was up quite a bit. I noticed a cough on Sat when we were out. It is starting to sound pretty croupy. On Sun morning he was running a temp so Brad kept him home from Church. He was in a good mood the rest of the day after his four hour nap. We painted pics, played games, and hung out watching football.

I can’t wait to get his bedroom set!! It is awesome and I was even able to order a mattress that has memory foam in it for his pressure points. I want to say a big “THANK YOU” to everyone who has bought a bracelet for this cause for without it, this wouldn’t be possible!! I think that it should be in towards the end of Jan. Just in time for our (what will then be) 2 year old.

I can hardly believe how fast the past couple of years have gone. I look back at time before I delivered and see such a different person than I am now. I remember praying to God for just a couple of close girlfriends. Being blessed with Alec, I have been given a gift of GREAT friendships that would not have happened otherwise. Thank you God! To my friends (you know who you are!!); I treasure each one of you and am so grateful I get to be a part of your life.

Please continue to pray for our nurse. It is much needed at our house to get some consistency started. Also continued prayer for Rebekah and for my and my job. And for Alec that he does not come down with anything.

God Bless and Have a GREAT day!
Stephanie

Thursday, January 5, 2006 3:38 PM CST

I brought Alec in to see the Dr today. Turns out he has folliculitis (sp?) probably from the pool on New Years Eve. We are not going to put him on antibiotics since augumentin seems to be the only thing that works thus far and it gives him c-diff. No thanks on the diarrhea. Alec will just have to itch! Actually I have had folliculitis before and when I have had it, it doesn’t itch that bad, but I pulled out some topical creams from our home pharmacy to use on him.

Alec was also exposed to RSV on New Years Eve. So far things have been ok for him, although Dr DeHaan did start the process of setting up the RSV shots. A nurse from McKennen will be coming to administer the shot once a month for four months.

For the most part Alec has been doing ok. His seizures are more intense and lasting longer. I see so many different types of seizures going on with him. His respiratory status has been fairly good. The inhaler has been a wonderful thing for him. No new developments on going to Atlanta, but I haven’t done anything with the issue. I should call Dr Renaud at Mayo and have her contact our insurance company to see how much they would actually cover, if anything. Really I don’t have much interest in going because there is no huge benefit from the result. Bottom line, Alec has a degenerative disease with no cure possible. Why spend a small fortune to be told that by another dr?

Aaron had his first night of swimming lessons last night. He has been all excited about it for weeks, but then last night when he found out that he had a male instructor he lost it. I didn’t go because I went to Women’s bible study, but Brad said it was a disaster all night. Since finding out on the male instructor, Aaron pretty much cried the whole way through and Brad took him out of the pool early. I couldn’t believe it coming from our fish of a child who was swimming circles around his last class. (Geri-Anne: Have your girls been communicating with Aaron somehow??!!) Oh well, we will try again next week! I told him last night that if he didn’t take swimming lessons then he would have to wear a life jacket every time he went swimming for the rest of his life. His response was that he wanted to wear a life jacket forever, the rest of his life.

I need some help from everyone storming heaven for God to place the perfect nurse in our home for Alec. Interim is still sending out a different nurse every day. I was told yesterday that they updated their advertising. This is something that they should have done weeks ago in my opinion. So, I am going to continue to trust God that when the time is right it will happen. I am a control freak so this is hard for me to do!!

Please continue to pray for the Spader family as Rebekah is still in the NICU and it is not looking like she will be able to join her family at home for awhile.

Thursday, December 29, 2005 2:22 PM CST

First off, check out the pic above. You can see the lamb ornament we got from Eli’s Angels hanging above his head!

What a great Christmas we had! Thurs night Cathy with Morgan Stanley Dean Witter came with supplies and gifts for our family thru Laney Bear Care. Thank you Everyone!! We also had a surprise visitor on Thurs night, Sue, who stopped and dropped off a gift card for our family to use at Chuck E Cheese. Thank you Sue!!

Friday I did not work and played with the boys most of the day. In the afternoon I bundled Alec up and we went outside to play with Aaron. We made our snow angels for Eli. Alec’s angel is hard to see, but my muddy boot prints are in between the wings and the feet (?? Not really the feet but the robe). It was fun. I pulled both boys in the sled and they wiped out twice, both seemed enjoy it! Aaron also pulled Alec around in the sled.
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Aaron's Snow Angel

Alec's Snow Angel

The boys were both pretty healthy for Christmas. Alec does need to go up to Gillette and get his seizures evaluated, but I didn’t want to take him up 2 days before Christmas, so I am waiting to call again until after the New Year. I have just been increasing his Clonazepam as needed. I am not sure if these new seizures (lasting 15-20 seconds) are a result of the decadron shot he received in the ER or because of the Robitussin. He hasn’t been having near the amount this week and he did last week, but I also increased his clonazepam last week too. I figure I am going to try the robitussin again here and see what kind of reaction I get.

Christmas was a lot of fun this year. We put 250 miles on the van from Sat 4pm to Monday 4pm, but it was fun and well worth it. We got to spend time with all of our family and the boys handled it well. I must say I probably have two of the most spoiled boys in the tri state area.

I was talking to another mom last night about bittersweet holidays. Although things may be ok now, you always have in the back of your mind “when”. “Is this going to be the last holiday?” It sucks that you have to even think that. I am just so thankful that we had a great Christmas this year with our boys. I can hardly believe that Alec is almost 2! Brad and I decided that we were going to take the boys up to Build A Bear in the cities. I really wanted to make this birthday special for the boys because this may be the last for Alec. Aaron is at the age now that he will be able to remember this trip (especially because his memory is like an elephants!). We never know “when” for that is all in God’s hands, but I want things to be special on their birthdays. There are always going to be bills to pay, toilets to clean, errands to run, laundry, etc. I would much rather invest more time in and with my children than to worry about the rust stains in my toilet or stress out about bills. It will always be there, by my kids may not. So hugs your kids tonight and tell them that you love them! Shut off the tv and play with them and read to them.

We also received a gift in the mail on Tues. $100.00 sent anonymously from our Friends in Christ. We appreciate it greatly, but please let us know who you are so that our family may properly thank you.

Yesterday was a great day for me. I went to my Grandma’s and made bead necklaces from beads that my uncle had given to all of us from overseas. It was fun and relaxing, plus interesting knowing that my uncle himself got these beads.

To all of my CB family: I have not had the time to sign many guestbooks lately, but know that I do check on all of you daily.

Please pray for the following:
1. Spader family. Rebekah is still in the hospital waiting to come home. She will be discharged as soon as she can consistently gain some weight.
2. Eli’s Family, that God will make their stolen stuff appear.
3. For our home nursing situation. We still do not have a full time nurse. We have been having different people in each day and the schedule has been up in the air and not completed for the next day until the last minute. Please pray for the right full time nurse to come into our home.
4. Prayers of praise for all of the wonderful people that have done things for our family this season.

May you all have a wonderful day!
Love and Prayers,
Brad, Stephanie, Aaron & Alec

Tuesday, December 20, 2005 3:11 PM CST

Wednesday night I came home and we had received our Christmas Package from Eli’s Angels. It was so exciting! I was like a kid in a candy store. Thank you Ann & Chad!!

Wednesday night we also had pool and Alec was very social. It was nice to see him enjoying it so much. Friday when I went online I found out that Ann & Chad’s house had been burglarized. Absolutely horrifying to read. There has been stories run on the Denver news and you can check out their site for details (co/elijahkurtz). Please be in prayer for them that the thief(ves) anonymously return the items.

Our weekend was fast. Friday we all got haircuts to look sassy for the holidays instead of shaggy dogs! Thurs night we had a Laney Bear Care Board Social and Fri night was Brad’s Christmas party. The boys were good for their sitters, Kyle & Amy on Thurs and Kristin & Nelly on Fri. Thanks guys! Saturday we just hung out and Sat night we went driving around looking at the Christmas lights in the lanes in Sioux Falls. Aaron fell asleep and Alec liked it and was wide awake the entire time. Sunday was church and hanging out again. I went to bed at 6pm and fortunate for me I did. Alec was up all night crying, whining, fussing, coughing, congested, you get the point!

I brought him in the clinic yesterday and they said just to use robutussin, however upon returning home his respirations we increase with no help from the nebulizer and he was gray and didn’t look well. So into the ER we go. What a joke. Alec received a steroid shot, epinephrine(sp?) neb, chest xray and cbc since none of that was done in the clinic. They had to draw the cbc 3 times because it clotted the first two, however it took them 2 hours to figure out that it clotted the second time they took his blood. Xray only sent of the front view of his xray so they had to hunt down the lateral view. We ended up getting out of there at 6:45 and we received a $10 gift certificate to the Sioux Valley gift shop for the confusion.

On a good note, Alec’s pulmonologist from Mayo called me yesterday while I was sitting in the ER. He told me to call him if Alec wasn’t better by Thurs.

Aaron is having sinus issues also. Yesterday his nose bled slowly all day. He has an appt tomorrow afternoon with a peds dr, Dr Lang. Dr DeHaan our reg was fully booked for 2 weeks, so I think that I am going to switch both boys to the peds clinic at SV otherwise we can never get in when we need to.

Prayer Requests:
1. Health for our family.
2. All of our CB family for the holidays.
3. Ann & Chad, and the burglar(s).
4. Spaders, who had baby Rebekah last night. Rebekah is in the NICU.
5. Our home nurse. Gina’s last day was Thurs 15th and Interim talked to the Medicaid office about possibly resigning from Alec’s case. So we are having major issue with that and I have not one nurse scheduled yet for next week.

Love to all and Merry Christmas!!

Wednesday, December 14, 2005 3:39 PM CST

My oh my. How do the days seem to go so fast?? 11 days until Christmas! Wow!

Things have been going pretty well at our household. Last Wed Turk took Alec to the pool. As soon as Turk loaded Alec into the van he kept his head and eyes turned toward Aaron’s carseat. When Turk picked up Aaron Alec was so happy to see him. Too cute from what Brad said!

On Thurs we had Alec’s IFSP meeting. Nothing real new there. Going to continue on with the same therapy’s we have. Alec is making progress with his tracking, arm movement, and his socialization overall. I pray for him to show small improvements on the whole so that we can keep going with the therapy, but the reality of mito is that there will be regression. Mito sucks. For now we are happy with all we have and will continue to think positive!!

Friday night Aaron had his 1st friend stay over at our house, Ty. Our neighbors also came over for supper and games. We had a great time and played cards. Turk was the lucky duck for the evening and cleaned everybody’s quarters out. A rematch is soon to be planned so I can get back some of his winnings!

Saturday we were finally able to get together with some friends of ours for the first time. We have been trying to spend some time together, but it hasn’t worked out until now! We had a fun time, and we can’t wait to see them all again.

Sunday morning we used the laxative that is sure to work for Alec, church. I don’t know what it is about that building. Every week he poops on the way, right after we arrive, or right when the service starts. I swear we spend the first 15-20 minutes every week bombing out the nursery. Sunday night was Aaron’s Sunday School Christmas Program. All in all it went well considering when the group got up during Church in the am he came running off crying and wouldn’t go back up there. We did almost have a catastrophe though. Aaron kept putting his hands in between the buttons on his shirt and he got one stuck. There was almost tears, but he got it out just in time!

Monday I finished up all of the odds and ends stuff for my Christmas shopping. I bought a couple of gift cards to the mall and they charge you a $2 processing fee per card. What a rip off. I am finished buying gift card there! I went with my mom and my aunt and helped them finish their shopping.

Last night Brad had volleyball. I stayed up until 3 am working. What was I thinking. I am dragging butt today. I have to keep moving otherwise I feel like I will fall over. I am sorely disappointed that my snow is melting. I love the snow. I have been singing Christmas carols all day long in the office since after Thanksgiving. I am sure that a few of the guys are about ready to choke me. I haven’t been singing much the last couple of days. Brown snow grosses me out. I hope we get another foot before Christmas.

I had Alec try on a Christmas gift last night. I made Aaron cover Alec’s eyes up and I told Aaron not to tell him what he was getting. After I put the gift away in my bedroom I was walking down the hallway and heard Aaron say to Alec “Alec, you did not hear that”. I have no idea what he said to him!

Please pray for all of my caringbridge friends. I feel like since Eli’s death we have all be loving, hugging, and kissing our kids more, but I also feel like we are all holding our children with all of our might waiting to see where the Angel of Death stops next and praying it is not us. I feel like we are all waiting for the bomb to drop and we all know it is coming. It just sucks so bad. But yet we are all so thankful that our kids are still here to hold. I too, will someday have the ache in my heart and the ache in my arms to just hold my child one last time, as I am sure Ann and Chad feel. Please continue to pray for them especially with the holidays coming up.

Prayer Requests:
1. Ann & Chad
2. All of Eli’s Angel’s members that all may stay healthy and enjoy the holidays with their family.
3. The Spader family as baby #4 is still in the womb. Pray for God to deliver this child at the time of when it will be best for the baby.
4. Skye, who will be two in three days (17th I believe). She has not been doing well and right after Thanksgiving, hospice didn’t think she would make it to Christmas. Skye seems to have shown some improvement today and please pray it continues.
5. For our family.

If any of you would care to see a miracle please visit Jacob (fl/Jacob) as he and his family is truly “Amazing”.

I am going to leave you with a quote found on another webpage written by a mom:
“Most people never have the opportunity to see an Angel, or simply do not look well enough to see them walking among us. This however, does not mean that they don’t exist. Me, I’m one of the lucky few. Not only have I seen an Angel, I call him my son. He is my “Angel-on-Loan”.

Peace,
Stephanie

Tuesday, December 6, 2005 1:14 PM CST

I made it updating before a week!!

Found out a couple of weeks ago that our FT nurse is quitting. Her last day is on the 15th. Please pray for the new nurse that will be coming in. Interim has one woman that they would like to take the position and we meet her on the 15th of Dec. I have been frustrated with Interim this week. They haven’t had anyone schedule for today since the schedule came out. Of course I have to call everyday to see if they have filled it. Finally at 4pm yesterday they found someone to watch Alec. The nurse scheduled for tomorrow has to go to a funeral so we have a nurse we have never met coming in tomorrow. She is coming to be trained at 6:30 am. I may have to drink some caffeine to get my brain moving at that time of the day!!

On Saturday I brought Alec in to Acute Care because I thought he had pneumonia. He did. They started him on Augmentin (the poops are going to be coming strong soon!) and then we went in to see our family dr yesterday. Alec’s white count was normal so he just added orapred (steroids) for three days. Our regular nurse asked me yesterday how I knew he had pneumonia because Alec hadn’t been acting much different than normal. I just knew. Just like I told my boss at the time in 2000 the exact date I would starting dating Turk, Jan 20th, 2001. Call me psychic or psychotic! I knew Alec had pneumonia.

I took Alec over to Roxie’s (Aaron’s daycare provider) yesterday after the appt. Aaron has told both her and I that he wishes Alec could come to Roxie’s house. So I surprised Aaron and he got to show off his “little” brother. Aaron is getting excited from Christmas and I must say so am I! We have had our tree up for a week and almost everything wrapped. I am almost 100% done! I can’t wait to spend the holidays with my family. And like everyday we will celebrate like it is our last!

We were going to go out in our snow and make snow angels for Eli last weekend, but I didn’t want to push it with Alec’s lungs. If the temps ever get above freezing I will take him out! Hopefully we will in the next few days.

If you haven’t checked out the photo album, I updated those photos when I redid the website.

Please continue to pray for Eli’s family and the Spader family.

Wednesday, November 30, 2005 1:31 PM CST

Wow….Where to start??

I too have been struggling with Eli’s passing. I can’t even begin to describe my feelings. I can’t begin to imagine that pain and hurt that Ann and Chad feel amidst the feeling of joy knowing Eli is with the Lord. I try not to dwell upon it as when I do I feel sadness in my heart and tears in my eyes. Following all of my caring bridge families with mito (maybe just one family member has it but we all live with it and are all affected) we all know that this inevitable is coming, but it doesn’t make it any easier when it happens. Eli’s death is the first that has affected me to this extent and sadly I know there are more coming, including Alec’s. How I wish I was in Colorado right now celebrating Eli’s life on earth and his healing to heaven. Somehow hugging the computer is just not the same. Please stop by Elijah’s page and let the Kurtz family know you are praying for them. I know they need the prayers.

www.caringbridge.org/co/elijahkurtz

Alec has been holding his own. On a good note, Alec has been vocalizing much more and actually making some new sounds. We had a fast and furious Thanksgiving weekend. I did not get my deer, I didn’t even get to shoot my gun! But my season is still open and I will have to see if time allows for me to get back out. Brad was gone hunting the weekend before Thanksgiving. I had a fun weekend with the boys. I also went up to Flandreau to Royal River Casino for my birthday and won 27 bucks!!

Alec has been having some sleep issues. He has been waking up early in the am. Anywhere from 4 am on. We have tried upping (sp?? Is that even a word?) the clonazepam and melatonin. He was sleeping the morning still when I left, so that was good. Lately he has been having more seizures. Maybe this clonazepam will help and hopefully it won’t knock him out too much. He also hasn’t been pooping regularly. He finally pooped on Sat (last time was Wednesday am). We were paying for purchases at Campbell Supply when I thought Brad farted while we were standing there (since he had earlier when we were leaving the hunting section). I gave him the evil eye and he tells me it wasn’t him. The culprit was Alec, which we didn’t know until Brad put him in the car seat and then had poop on his hand. So to the back of the van we go cleaning the car seat and kid kart. There was crap all over Alec’s pants, down his legs, socks, everywhere. He also decides he is not done pooping while we are in the process of changing him. Then when we are almost done, he decides to pee. Oh the joy of poop! We were happy that Alec had finally produced something, and we should have known to expect it because it always happens at the most inconvenient time.

Aaron is getting mouthy. We took full advantage of our snow day on Monday and clean and organized. I told Aaron a few times to help me sort toys and get them picked up and each time he automatically answered me that he was. I however, failed to see his help and yelled at him after a few minutes. (I think that he just tunes me out sometimes, he must have learned that from Brad). After I yelled at him he tells me “I am Mom, settle down.” Later that night he told Brad to “Just relax, I am working on it”. Monday night he was in the bathtub and I went it to wash him up. He is sitting up by the faucet staring in to the tub: at puke. I asked him what he was doing. “Nothing” (yeah right! Mom knows better than that). He was drinking the bathtub water. How appetizing. Then last night he was upstairs and he was trying to get the light on in the bathroom (something most 3 ½ year olds can do, but when you are only 3’ tall it can cause problems), didn’t get it in time and pooped in his pants. Diarrhea to boot.

December is a month of no scheduled appts!!!! We had an appt with the developmental dr the Tues before Thanksgiving. He wants us to go to Atlanta and get the fresh biopsy done. He was also going to talk to the Medicaid office about funding. I have to figure out who I need to talk to at my insurance company and have Dr Renuad talk to them. I also need to figure out how much this total bill in going to be to go and see Dr Shoffner. If we don’t have to pay a huge amount out of pocket, we are going to go. We will see what transpires. Alec also saw the opthomologist the next day. We go back in May again. He doesn’t want to put Alec in glasses until he is 2 ½. January we go back up the Mayo and see Dr Renaud (neurogeneticist), the ENT, Pulmonology, and Infectious Disease.

NOTE TO ALL: IT IS THE WINTER SICKNESS SEASON. PLEASE USE PROPER HANDWASHING TECHNIQUES AND USE HAND SANITIZER. DO NOT COME NEAR OUR HOME AND OUR CHILDREN IF YOU ARE SICK OR HAVE BEEN EXPOSED TO SICKNESSES. Thank you!!!

I do have the following prayer requests, for those of you who are still reading my novel!
1. Elijah Kurtz Family
2. The Spader family. Mom is pregnant with #4 and was just admitted to the hospital for constant monitoring of the baby. They are suspecting that the baby has a genetic disorder just as their oldest child.
3. For a healthy holiday season for our family.
4. Prayers of Thanksgiving for all of the wonderful people we have meet due to caringbridge.

Have a wonderful day all!!

Friday, November 25, 2005 2:22 PM CST

Please be in prayer for Eli's family. Eli went to heaven early this morning.

www.caringbridge.org/co/elijahkurtz

Wednesday, November 16, 2005 8:31 AM CST

My weekend was enjoyable & relaxing. We had a good time and I even got to go out for supper with a couple of other mito families. So good to see them and talk with someone who actually "gets it" because they too are living it. I think that I could actually spend days at the Mall of America. Of course I would also have to have lots of money too!

Brad's weekend with the boys went fine. Alec has continued to have some episodes every so often. Maybe once a day?? He has been unbearably crabby every night. Last night I gave him an extra dose of clonazepam, so we will see what tonight brings. I may have to up the clonazepam overall, even though it makes him more droopy eyed.

Not much else has been going on. Tonight we have pool therapy. Hopefully it goes well. Last week Alec bawled the whole way there, was quiet for therapy, and then cried for the rest of the night until we gave him clonazepam.

I myself have kind of been in a blue funk lately. I feel like we have no doctors really. Alec got his flu shot at Mayo and the rest of us got ours last Thurs. Aaron didn't even cry! I was so proud!

I think that Brad and I are going to take the boys up the cities to the Mall of America sometime this winter for their birthdays. We can go to the underwater aquarium, camp snoopy, and I want to take them Build-a-bear to each be able to make their own. I am excited about that! I think it will be lots of fun.

Not much else to report. Next week we see the developmental dr here in SF and also the opthamologist. Those appts along with Turkey day and the opening weekend for my deer season it will be busy. My goal is to shoot a bigger buck than the two that are hanging on our walls that Brad shot :) Love you honey xoxoxo

Please pray that Alec can get his teeth through soon and as painless as possible. Please pray for all of the rest of my CaringBridge families that they all can have a wonderful holiday season. Thanks and love to all....

Wednesday, November 9, 2005 8:38 AM CST

A week already!! Where does the time go???

Alec is doing ok. We have not had any screaming seizures in a little while. Every so often he has these new seizures that are more repeatative and last longer. He is still having the infantile spasms every day. I would say maybe 50/day?? So we are better. But then we have our bad days too. The past couple of nights all Alec does is cry and fuss. I don't know what is wrong. It is not an enjoyable evening when the 3 hours we get to spend with him are spent praying for 8pm so we can give him melatonin to put him to sleep. Last night we gave him motrin and that helped a bit. The night before we gave him clonazepam, and it didn't help much.

Last night at 3 Alec woke up choking on his flem. It is the first episode since a day or two after starting the augmentin. We stopped the augumentin last Fri. I feel like I am kind of getting the run around up at Mayo, because nobody wants to make a decision on anything. Alec's blood test came back ok, but his IVG (??) was elevated and Dr Boyce thought it was because of allergies and asthma. So we stopped the augmentin because he also thinks that Alec probably doesnt have sinus infection, just an underdeveloped sinus. But the pulmonologist thought it was infected. I have no idea what the ENT thinks, because we haven't talked to her, but if these flem choking episodes continue, I will be driving up there demanding an appt with all three of them at the same time!! Time will tell.

We also have to make a decision on Alec's neuro. Do we want to stay in SF or go to Gillette's in St Paul? Brad and I have two conflicting opinions.

Today Alec gets to go to the pool for therapy. Yeah!!! I am sure he will enjoy it. Brad is taking both boys by himself! He also gets them alone all weekend as I am going to the cities. It will be good bonding time!

Have a good day!
Stephanie

Tuesday, November 1, 2005

Friday's appt went fine. As usual the first 59 minutes of the hour appt was spent going through Alec's medical history! We went down to get blood drawn to check his immune system. We are still waiting for those results. I should be talking to the dr tomorrow. Should being the key word! Thanks to Tanya coming with me the trip went extremely fast and Alec was a perfect angel. He only fussed about the last 2 hours of the trip.

Saturday was a busy day for the boys and I. We got up and cleaned and organized. Around 1 my neighbor Amy came over and helped me until 4:30. THANK YOU AMY!!! The kids all played together well and my house is starting to come together. Turk and I so owe Kyle & Amy. They are the best neighbors. I keep telling them that we when move, they have to move with us! After cleaning we put on costumes and headed out to see Grandpa Donnie and Grandma Patty. We had supper and played pool hall rummy. It was a fun night!

Sunday we went to church and then went to Grandma Kim's and Grandpa Tom's farm. We had lunch and then did the costume thing again. We then trick-or-treated at my mom & dads, went to the nursing home in Inwood and saw Grandpa Gus & Grandma Edna, then went to see Grandma Marlys and Grandpa Dick. Busy, Busy!! But everyone had fun.

Last night Aunt Diane came over. Alec was so crabby and just cried and cried. We only took him to a couple of the neighbor's houses and then brought him back home. Diane sat with him while Brad and I took Aaron out with Kyle & Amy and their kids. We had a blast and it was awesome weather. Aunt Diane did well with Alec and only had to vent him once. He was sleeping peacefully by the time we got home. Thanks Diane!!

Today I took Alec in to see Dr Bunch, his local neuro. Nothing major, just more of a routine check. We haven't seen her in clinic since March. Decided to wait on starting the zonegran until seizures appear to be worse. I would like Alec off of the Augementin and have his sinuses cleared up before changing anything again. Alec pooped all over when we were there and I didn't notice it until I picked him up out of his kidkart to be weighed. What a disaster! Poop all over him, his poncho, his clothes, and a nice little pool of it sitting in his kidkart seat. Thankfully, Dr Bunch's nurse, Renee was able to help me! Dr Bunch and I also talked about the VNS (Vagus Nerve Stimulator). Time will tell on that one.

Alec's therapies seem to be going ok. I really think that he must hate speech because everytime they come he is sleeping. They have even changed the times to come, but he still sleeps! Melissa, if you see this in the next 18 hrs or so, write in the guestbook. I want to cancel Alec's pool therapy for tomorrow because of the diarrhea.

Tonight I hope to have a relaxing night. Turk has volleyball. Might have to make it a movie night at our house. Or maybe an Animal Planet Marathon!

Thanks to all for the prayers, support, and advice.

Thursday, October 27, 2005 10:22 AM CDT

We are off to Mayo Clinic again tomorrow! I was fortunate to have my friend Tanya, with Laney Bear Care, rearrange her schedule to come with me for the day. It will be a long drive, but much better with good company!

Alec has been pretty good this week. The diarrhea hit on Monday so we have been dealing with poop, poop, more poop, poopy towels, poopy sheets, and have went through a box a wipes it seems! I did cancel his pool therapy for yesterday as I didn't want him to be the one responsible for getting everyone kicked out of the pool for a day or two while they drain and clean it! Off and on he has been having some choking episodes, but my suspioustion(sp?) is the augmentin being hard on his tummy and the start of c-diff again. I do think that the inhaler has helped and it is darn nice having that albuterol inhaler to use as a portable nebulizer. Just a couple of days again I thought to myself that Alec's seizures seem really very well for the amount of seizure medicine that he is on. It is probably his lowest amounts ever (75mg daily Topamax, .25mg Clonazepam, and 3mls Febatol 600mg/5ml). So, that night we woke up to the most horrible screaming seizures ever!! We should have used the diastat. Just when I was getting up to get it he had 3 more and then stopped. I am sure that he was up most of the night because he was talking, fussing, and seizing that we heard. We were just to lazy and tired to get out of bed. I think that I am going to call Dr Wical's office and see what she wants to do for the felbatol. We are down to our last decrease. My plan is to just hold out until we can get his sinuses cleared out and see what they do. Alec has had sinus infection since Aug 12 and been doing pretty darn good I think!

Brad and I really haven't discussed going to Atlanta for another muscle biopsy. I do not think that we are going to go at this time. We decided a long time ago not to test our genes/blood to see what that actual percentage of recurrance would be if we decide to have another child. Maybe someday we will change our minds and want to know the answer, but for right now it is not important. We know that Alec has mito and there is nothing that is going to cure it or help make it better temporarily. No need putting him through the procedure again along with all of the added expenses of everything as SD medicaid isn't accepted (to my knowledge).

Brad took Aaron to the dr yesterday to try and fix his nighttime cough. I am sure it is because of allergies. Aaron already gets an alavert tablet in the morning and we are now giving him singulair at night too. We also gave him benedryl and it knock him right out for the night. No coughing that we heard, although I doubt that we would have since our nurse woke Brad and I up this morning by knocking on our bedroom door! Some year we will maybe be on a consistant sleep pattern!

Tomorrow our appt is with Dr Boyce, Infectious Disease. I have to get online and do some research on IVIG treatment, thanks to a heads up from Bonnie (Thanks Bonnie!!). I definitely think having Alec on antibiotics longterm would probably be good for him. We could maybe get him and keep him healthy for once in his life!!

Nov is a busy month for appts. We see our local nuero the 1st, local GI the 4th, developemental dr the 10th, opthamologist the 23rd and hopefully that is it!!

I know that we do have to go back to Mayo in Jan to see his pulmonologist their. I may bump that up to Dec depending on how Alec is doing and how much it would interfere with our holiday plans (so selfish aren't I?!)

I will try to update sometime this weekend. We plan on going trick or treating out at Grandma Patty's & Grandpa Donnie's on Sat sometime and plan to hit all of the Grandmas & Grandpas on my side of the family Sun. Then of course, getting to see all of the kids in the neighborhood on Monday. Alec is going to dress up in this little pumpkin costume that Auntie Diane got for him and Aaron is going to be a cowboy with a horse that Auntie Diane got for him! I am looking forward to it.

Does anyone know of an organization that I can call to have them come and work at our house???

Please continue to pray for the healing of Alec's sinuses and that he has many more happy days with us. I have been trying to explain to Aaron that when Alec goes to live with Jesus he is going to get a new body and Alec will be able to run and play and do all sorts of things that he can't do on Earth here with us. Aaron says to me the other day, "Mom when Alec gets his new body he can paint pumpkins all by himself!" He is so excited for when Alec can do these things in heaven. What a witness for Jesus Aaron is going to be.

Monday, October 24, 2005 8:04 AM CDT

I am looking for volunteers!

1. Brad does not want to go with me to Rochester for Friday's appt and I was wondering if anyone would be interested in going with me and the boys. Email me if interested because I am not sure if I am going to leave on Thurs night or Fri am.

2. I never have the time to invest in organizing my house. I will pay 10-20 dollars per hour depending on the task. Things I need done include: washing windows, cleaning trim, cleaning out cupboards/closets, filing papers and papers and more papers! I haven't had a chance to file Alec's medical paperwork since he has been born. The first 10 months is in some assemblence of order, but nothing since then. I am currently in the process of getting a toy shelf made to organize the toys. For those of you that are mechanically minded, I need the closet doors hung on the downstairs closets, mini blinds put up, and a mirror purchased and hung for the downstairs bathroom. I will pay for all parts, pieces, or organization material neccessary. Let me know if you are interested.

We did get home on Thurs night which was awesome!! Alec woke up early Fri morning and was so excited to be home. He was cooing and kicking all over in his crib. It was so cute, even at 5:30 in the morning!

Our weekend was fun. On Friday the boys and I set out for Sioux Falls. We went to visit Patti at work, went to the mall to by Aaron a pair of good jeans, ate lunch, drove through the Target parking lot (didn't stop because all the handicapped spaces were blocked off and being painted and I didn't need anything specific their anyway!), went to Wal-Mart and bought way too much, went to Sioux Valley Home Med Equipment, Lewis Drug for stamps, and Unclaimed Freight Furniture. I made Brad come into town and meet us to look at bedroom sets for Alec and for our bedroom, but I couldn't convince Brad that we were going to win the lottery on Sat so we could buy the furniture!

Saturday the boys and I just bummed around the house. We cleaned up the house, painted pumpkins, and organized and cleaned up Aaron's bedroom downstairs. About 4 we headed out to Hartford, stopping at Toys-R-Us to buy a xmas present and Painted Prairie to pick up a craft item for Darcy. We then went to Darcy's house and hung out.

Sunday we went to church and after Sunday School I loaded up the boys again and we went to Aunt Diane's house for lunch and making applesauce. I had a fun, but tiring weekend with the kids. I am going to seriously have to start looking for a lift van because I am dang sick and tired of loading and unloading both Alec and the kid kart!

Have a good day everyone!!

Thursday, October 20, 2005 10:00 AM CDT

Good morning.

Yesterday was a blah day. I went up to see if we could get into the ID dr. No such luck. I then hit the pharmacy to get Alec's inhalers and nasal spray scrips filled. I also stopped at 5th floor at the ENT dr to hound them again about a followup appt to go over the CT. I told the nurse that I was dealing with for the 2nd day now to get this appt scheduled that since she told me that she was going to call me that she better call me before she left yesterday or I was going to up in the am hounding her again. So she called and our appt is a 9am Fri.

Yesterday Alec was just not feeling well. We didn't do much other than hang out around the RMH and complete neb treatments. His cough was bad again last night during the night, but today he doesn't sound as junky.

This morning we had the CT scan. Well, they wanted to have anesteasia (sp??) sedate him. I was not hip on that when we discussed it on Tues, so they informed me that we could decide the morning it was to be done. Answered prayer!!! We didn't have to sedate him at all. We had the most awesome nurse that came to get us that we talked to about it. She called to see if we could just try Alec in the scanner quick to see if it would work and the scanner was empty. We scooted right on down to CT and they put him in and away we went. He moved a little bit so they needed to do one more quick scan and the dr came out and held his head so he was still. I was so excited!!! Praise God!!!!

So.....I called up to the pulmonology dept to see if we could bump up tomorrow mornings appt since this am went so smoothly and quickly. Turns out we are seeing Dr Pianosi at 4:30 this afternoon!!! Yeah!!! Depending on the appt, we may be able to come home tonight! I am so excited! I am going to get everything cleaned and packed now, but not loaded into the van!

Happy 30th Birthday Brad!!! I love you and hope that you have a wonderful day! I miss you and Aaron and I can't wait to see you both! xoxoxoxo

Wednesday, October 19, 2005 9:31 AM CDT

I forgot to tell you all on Monday that I had time to kill between appts so I took Alec over to the piano between the buildings in the clinic. The pianist started singing and playing songs for Alec. Itsy-bitsy spider, ABCs, the Barney Song, etc. Then a gentleman that comes by to sing came by and starting singing to Alec too. Alec loved it. He was so excited in his kidkart and everyone was watching him and smiling at him. They did go on with their show, but it was fun.

Yesterday we saw a pulmonologist. He decided to put Alec on an inhaler and a nasal spray. We also go an albuterol inhaler that we can use like a portable nebulizer. Too cool! We have not gotton in to see the infectious disease dr. I have to go up to the clinic at 12:45 and see if their are any openings or if he can work us in.

Last night was a rough night. I am sure the fact we were outside some yesterday contributed also. Alec kept coughing and was so stuffed up. I finally gave him a neb at 2:30. I did sleep pretty well after that. Alec woke up about 7:30-8 or so. I was dead to the world on the other side of the bed. He laid their quiet as a church mouse until it was breakfast time! Then I heard him smacking his lips.

Last night I was able to go out to supper with Krista (my bros gf) and a mom and her son that I have met here at the house. It was nice. My aunt Lori and I are going to go out for supper tonight.

Please continue to pray that we can see an infectious disease dr today and that the ENT dr can see us Friday am.
Thanks....

Monday, October 17, 2005 3:01 PM CDT

We have made it to Rochester. I got into town last night about 8ish and went straight to the Ronald McDonald House. They even had open rooms!!! Unheard of! Answered prayer because I feel a lot safer there since Brad isnt with us.

Our weekend was fast and fabulous. Alec is still having some choking episodes, but we have not had to suction at all since the c-diff stuff is all out of his system. All we have to do is vent his g-tube. Overall he is in a pretty good mood.

We saw the ENT dr this am. She doesn't really want to do any surgery on his sinuses, which is fine with me. We have a CT Scan scheduled for Thursday am. She talked about possibly giving Alec a sinus neb, which would be awesome! No having to do saline or nose suction with that! The ENT dr also wanted us to see an infectious disease dr because of Alec's history with sickness. That appt is for Fri the 28th. Say some prayers that we will be able to get in tomorrow. I have to go to the desk in the morning and wait around to see if someone is a no show or if someone cancels. We see a pulmonologist at 10am tomorrow morning. Alec is starting to get his croupy cough back.

Dr Renaud's (nuerogeneticist) was pretty good. Basically she said that because the complex iv muscle wasn't run 3 times that it was not 100 percent that he had that, but pretty probable. Usually the test is run three times and the number is averaged. Alec's number was 21 (which is considered a significant loss - 21 percent with 100 percent being "normal"). The skin biopsy came back fine, but she said that wasn't unusual either. In her words "If it's postive, it's postive, if it is negative, you don't know". In order for us to know "forsure" she would want to send us to Atlanta GA to see Dr Shoffner and complete a fresh biopsy. If Brad and I did decide to do this it would take about 6 weeks to get in for the appt. Dr Renaud also thought that if we did do that then Dr Shoffner would let her complete the follow up appt, so that would mean we would only have to take one trip to Atlanta. Don't know if we will decide to do this or not. Time will tell.

Pray that we can get in to see the infectious disease dr tomorrow!!!! Praise prayers for us being able to get into the RMH. More updates tomorrow!! Call my cell if you want to!

Tuesday, October 11, 2005

Brad and I did end up going to Las Vegas and it was SO MUCH FUN!!! We had a great time. It was so relaxing and so nice to just get away.

The boys had a good time at the farm and Alec is feeling better. He went from diarrhea to constipation. He didn't poop the entire time we were gone.

We are now back to the grindstone. I am going to have to get to bed early every night to catch up on sleep! I forget to give Alec his meds at 5:30 last night. Totally spaced it. Too relaxed I guess!! (Or tired!)

This week will be busy with work and trying to get raffle tickets sold for the Laney Bear Care raffle. We have swimming tomorrow night, have to get out to Humboldt to finish up our camper for winter, birthday party on Fri night, I have plans on Sat night, Brad has to go play poker at Coconut Joe's (he is in the semi-finals) tomorrow, we have a birthday party on Sun afternoon and...we have to leave for Mayo then!!

Busy, Busy.....I will catch up soon.

Thursday October 6

LANEY BEAR CARE HOLIDAY RAFFLE!!!!!
$1 EACH FOR TICKETS!!!!

Anyone interested, please let me know. I will leave this info posted at the beginning of my journal for a week and a half or so. You will have to scroll down to check for updates!

ANYWAY.....RAFFLE
We are raffling off 4 items
1. $150 to Renner Corner Locker
2. $150 to Country Meats Harrisburg
3. Remington 870 Express 3 1/2" Pump Shotgun (Appx $350 Value)
4. Portrait Package from Evans Portrait Gallery including the session fee, 50 Holiday Greeting Cards, one 8x10 photo and four 5x7 photos ($789 Value)

Again, raffle tickets are $1 each. You can choose which item you would like your ticket or tickets to go to. Example: You buy $5 in tickets. You can put all 5 tickets to item #3 or you can put 2 tickets to item 1 and 3 tickets to item#4, etc. Anyone interested please email me and if you know anyone that would be interested, please forward them to this site. Or anybody can call my cell 605-351-2490. The drawing will be held Oct 17.

We are going to the dr with Alec today. On Mon night the diarrhea started and then he had a 103.5 fever along with vomiting. I started pedialyte at 1:30 am since we have to change his night drip at 2am anyway. Tues was no diarrhea and we did pedialyte most of the day. Yesterday I cancelled pool therapy because he is not well. All Alec does is cry all day and want to be held. His gums are all swollen along with everything else. I didn't start the Augumentin on Monday because of the diarrhea starting. So, we will see what advice Dr DeHaan has to give us today. I probably wouldn't have even taken Alec in if we were going out of town this weekend.

Brad and I are going to be going to Las Vegas. I have never been there before. As of now I don't even want to go because of Alec. I have been having a hard time anyway even getting out of bed in the am. I should go into the dr myself and get some happy pills.

Aaron is doing well. He had his halfway point last night in swimming lessons. Alec was crying this morning and Aaron gave his beloved blanket to Alec for him to use. Aaron also started a new daycare on Monday. It is going wonderfully. He was excited because Roxie (new daycare provider) had a bunch of different Halloween costumes for the kids to dress up in. Aaron has now decided that instead of being a horse for Halloween, he wants to be a swordwoman. I thought Brad was going to choke on his milk when Aaron told him that at supper the other night! But, Aaron and I discussed it the next day and I told him that he could dress up like a swordwoman at Roxie's for Halloween and at our house he can be a horse. He thought that was a good idea!

I will try to report either later today or tomm am what is going on. My mom is supposed to stay with the boys this weekend.

Monday, September 26, 2005 12:44 AM CDT

Well, I jinxed myself. Alec had a 1/2 way good weekend. Friday we went the ENT (which I will get to in a bit) and Alec fell asleep during the appt. We then went to the Harrisburg Homecoming Parade, went home to take naps (only Aaron slept), went to the hot dog feed up at the fire station, and then went over to our neighbors house for a bonfire. Saturday Alec was so happy. Then he went to sleep around 3 and after he woke up.....total crabbiness. He was fussy a lot of the day yesterday too. He was really tight and having quite a few seizures. We changed over the Zithromax from the omnicef so maybe it is that, but we also dropped the felbatol on Thurs. We will continue to watch it and see what happens. I do know that his teeth are bothering him. We don't go to the dentist until the 14th of Oct though.

So, the ENT is sending us on to Mayo. I had made an appt with Dr Renaud, the nuerogeneticist that we saw last May, earlier last week for Oct 17. Since we already had that appt they we able to get us in to an ENT surgeon in Rochester. The ENT here has no desire to do anything with Alec. Frankly, I think we freak him out. Of course, I would probably be freaked out by me too. I told him that I was not happy with how things were left and that every time Alec was suctioned from the nose he had nosebleeds and he was now gagging on his snot running down his throght(sp??). I told him that he had to figure out something different. He told me he felt it would be best for me to bring Alec to see someone "more specialized". Thankfully, we were able to get it going quickly and can coordinate it with our other trip.

I debate in my head a lot lately when I should stop. When do I just admit defeat and realize that I can't beat this disease?? Of course, then I am like I have to do everything that I think is possible to help Alec. Is sinus surgery going to help him? Is the VNS going to help him? Should I continue to pursue the GI help? I don't know.....maybe I will never be satisfied, because everything is always changing. I pray that God will show me when it is time.

Please pray for Alec, and everything that is going on with him. I need God to shout at me!!!!! Also, please continue to pray for me. I will let you know more details as I can.

Thursday, September 22, 2005

Wow! I can hardly believe that a week has already passed!

Last weekend things went pretty well overall. Brad worked. I got a nap in with the boys on Sat afternoon and they we went out to Chuck-E-Cheese. I was so in the mood for their pizza. Sick, isn't it!! We had a fun time. Alec was tired because he hadn't napped much, but he fell asleep. Of course, he had the screaming seizures while we were there. I am sure that everyone was staring and silently freaking out!

Alec's seizures have definitely been harder and the screaming seizures have become more frequent. It seems as if the screaming type only occur when he is tired ie:just falling asleep or just went to sleep. On the whole he is having more seizures, but not out of control. We decrease the Felbatol starting today again. Alec's mood though, has been much better. Yesterday he was so happy and excited when we got to the pool. He is more alert more often also. He has really been moving his legs and arms much more. So, I am going to keep on with the med schedule we have as I feel that I would rather have more seizures and a happy baby than less seizures and a crabby one.

On a very exciting note......Alec's therapist got him to reach for a toy in therapy on Monday!!!! What an accomplishment!!!

I think that Alec's teeth have been bothering him, but it also could be the extra seizures. We have been having to give him motrin every morning and quite a bit in the evenings also. His cheeks have just been getting so hot. I made an appt for him to go and see the dentist on the 14th of Oct.

We are also going in to see the ENT dr on Friday (tomorrow). I was not satified at our last meeting how things were left. Every time Alec's nose is suctioned it bleeds. I am interested to see how that goes! We also are going to see the new GI at Avera Children's the 30th. I have been so busy setting up appts is it unreal. We go see Dr Renaud (Mayo Clinic) in October, Dr Blake (developmental) and Dr West (opthamologist) in Nov. I still have to get in a visit the WIC office. It is such an aggrevation dealing with them. Since we can get Alec's formula through the pharmacy I am planning on dumping WIC since it is such a hassle and you always have to go in for Nutrition counseling and bring Alec in for check ups. No thanks. Walgreens drive thru is much more handy, although the people down at the WIC office are shocked that I can get his formula through the pharmacy. Little do they know that I can also get it through SV Home Medical. I tried to explain that to them, but they felt it would be best if I came in for a Nutritional counseling appt. Good grief!

I do have some prayer requests......
1. That God will continue to show us which way will be best for Alec regarding his medications.
2. That Alec will continue to have many more happy days.
3. That the seizures will decrease.
4. That his sinus issues will be resolved.
5. An unspoken request for myself.

Thanks, God Bless, and don't forget to sign the guestbook before you leave our site!!! Brad and I don't care if we have no idea who you are or how you found our site, we just like to know who is all visiting....

Thursday, September 15, 2005 9:38 AM CDT

Yea!!! Prayers worked! Alec is better. We actually slept through the night too. I was only up once when Brad got home so I feel well rested.

This weekend we will just be hanging out at home which will be good for Alec.

Aaron's swimming lesson session last night was great. He is much more comfortable in the water this year than last year. He can't wait to go back. Of course he is a little mister flirt with his instructor. Last night when we got there Brad kept him down by the pool until they were ready to start. Aaron was all worried about who his teacher was. He asked Brad a couple of times if he knew and Turk told him that he didn't know. After a couple of responses like that from Turk Aaron says "I better go ask mom who my teacher is"! Too funny! Then this morning he asked Brad who the nurse was today and Brad told him "Probably Gina". Aaron turns around and asks me "Mom who is the nurse today?" I guess he knows who keeps things running around the house.

Wednesday, September 14, 2005

UPDATE:::::::Wed PM
Alec has his croupy cough and we got some steriods to help that. We also put him back on omnicef because his sinus is still plugged solid. I was instructed that if he wasn't better in 24 hours that I had to call and be admitted to the hospital. Say some prayers that the orapred (steriod) works wonders tonight!!! On a side note I took Alec in to see an ENT on Monday (can't remember if I posted anything about that or not????). Anyway, I made another appt with him because I feel unsettled about the way things were left. He wanted to just irrigate Alec's sinus' and wait and see what sicknesses he ends up with this fall/winter. I should have questioned more, but my head was plugged. I am not too keen on waiting to see what Alec gets sick with as I feel that whatever he comes down with could possibly kill him. So, we are going back next Friday. I will update more tomorrow and let you know how our pumpkin is doing!!

Can you believe it?? Wed already???

We are taking Alec into the dr this morning. He is real congested and has a bad cough. I will let you all know what happens as soon as I can.

The weekend went really well with Alec. He was in a good mood most of the time. He has really been seizing out lately. The last two nights he has been crying and fussing. Last night we were up at 1am hurting and with a fever. We slept on the couch off and on for a couple of hours. Alec was then up again at a little before six crying and coughing terrible. Our nurse gave him a neb treatment once she got there and it helped. He is still wheezy though.

Aaron starts swimming lessons tonight. He is so excited!

Not too much else to report......for now....

Friday, September 9, 2005 10:26 AM CDT

We are home!!! The trip back was fairly uneventful once we got out of the cities. We stopped at McDonalds to grab a bite to eat and Brad took Aaron in to go to the bathroom before we hit the road. 10 minutes later Aaron tells us that he can't eat anymore because he is full and he has to go poop. Alec then cried for the next hour, but he then fell asleep.

What we are doing at home is just changing meds. We started Alec on the Nortriptyline, are decreasing the Felbatol, we dropped the Topamax down to 75mg twice daily because of his bi-carb levels, and changed the clonazepam to tablets. Should his seizures become out of control we are going to have to head back up.

Things we can try -
Zonegran - another seizure med. We have not tried this and it is not a main med, more of a supplemental medicine

Vagus Nerve Stimulator - this is a device that we surgically implant on Alec. It will not take care of the seizures, only possibly decrease them

Lamictal - attempt another trial of this drug. If he gets really irritable again, we will discontinue it

We have started him on the reglan for stomach emptying and carafate due to stomach erosion. The endoscopy showed areas of erosion in the stomach. I do think that Alec may have to be on the carafate longterm instead of short, but we will have to see what happens. Alec's stomach was also inflammed, possibly due to the felbatol, but can't say that with 100 percent surety.

The pH probe showed Alec's stomach acidity to be around 3 and normal was 5. I am not exactly sure what that means, but usually a person is supposed to be off their reflux meds for 5 days and Alec was only off for 2 and his stomach was still acidic. We are on Prevacid capsules now for that.

It is going to be trial and error on the Nortriptyline. Alec had a much happier day after being on it, but we having major secretion issues. Hopefully we can fix that.

Currently Alec is still having a little bit of secretion trouble, having more seizures, having some times of crabbiness (mostly in the morning upon waking), but being much more happy during other times. We just need to find the right mix. The neuro at Gillette also said that Alec may just be a child that doesn't tolerate high doses of meds. Right now I guess we are on trial and error. I do want to exhaust all med methods before going ahead with the VNS.

Today I am off to SV Home Med Equipment. They are letting us keep the patrol pump for now and we are sending our embrace pump in for repairs because the Ross Company claims we shouldn't be having the plugging problems. Good for them! I should make sure that they actually run the Neocate through the pump and bag!!

Not too much planned for this weekend. Turk and I were originally going to take the boys down to the Omaha Zoo, but that was when we had only planned on staying in St Paul for a week! WE don't feel like spending the money or the drive time. Brad took the day off of work to rest his back so we are working on getting our house back in order and cleaning our toilets! I am not even going to begin to tell you how bad our house needs a major fall cleaning overload! You would all be grossed out!

On Monday Alec has an appt with an ENT and also with his Physiatrist (sp??). We are maybe going to up his Baclofen. Gina (our nurse) is going to be just thrilled to be getting back to Alec! With all the med changes it is going to be like starting new!

Thanks for everything over the last couple of weeks everyone!!

Thursday, September 8, 2005 10:17 AM CDT

We are coming home!!! Yea!!!!!!

I will update more about everything later tonight or tomorrow after we get home. Please pray for a safe trip for all of us.

We may end up having to come back up here in the next few days, but we have decided to go home and wait and see what happens there.

Yea!!!! So excited!!!!

Tuesday, September 6, 2005 9:39 PM CDT

Good evening. I am going to make this quick because I am exhausted. Plus, Alec is sleeping and will most likely be up by 6.

Brad sat down in ER forever. Then I had to wait at the pharmacy forever. Muscle spasms is what they are calling it, although he is supposed to go see someone if it isn't better in a couple of days. We are thinking about having Turk's dad travel up with their van since Brad can't sit real long and then him and Aaron will go back. We will wait and see what tomorrow brings. Brad can't drive so I don't know what he will do if he goes home. We may be permanently indebted to the Kyle Hanisch Family!

Alec's surgery (the endoscopy) seemed to go quick and ok. He had a couple of areas of erosion in his stomach. They took tissue from the esophogus, stomach, and small inst to do a biopsy on. Those reports should be back in about 3 days. We will have to make Gillette a permanent address soon! Alec cried and cried. He had some blood coming out of his tube. He finally got to eat at 6.

The bloodwork this am came back with Alec's bi-carb at 15. (BAD). So they dropped the T for the am dose and over the course of the day his bi-carb went back up to 21 (better). He is getting the nortriptyline now. He got it last night also.

While I was driving Turk and Aaron to the RMH in Mnps Turk said "I wonder what it would be like to have a normal life? Wouldn't it be really weird?" So true. We wouldn't know how to function! Aaron assured me that he would take care of Brad for me. And he, by the way, was excellent today. I let him eat what he wanted for supper: banana and peanut butter cheese crackers.

Thanks for your prayers and support. I know that probably sounds repetative, but we mean it. Thanks everyone for signing the guestbook. We love the entries. I know that I never have the time to call anyone back or email anyone back for that matter, but know that I love you.

Tuesday, September 6, 2005 3:08 PM CDT

Pray for us.

Alec came out of surgery ok for now. He is screaming and crying.

Brad is down in the ER of the hospital waiting to get in because he has terrible back pain. He thinks he may have a pinched nerve or something.

Monday, September 5, 2005 6:52 PM CDT

Today was another day of unrest for Alec. He wasn't seizing as bad as the last two days when he woke up, but he has been absolutely miserable again today. The only time he was happy was when our friend Jeff was holding him after Alec woke up from his nap. Come back soon Jeff!!

We had to give lorazepam this am and he then went to sleep at 1, so I am glad that he at least slept this afternoon.

Tomorrow the endoscopy is scheduled for 1pm.

Not too much else to report. We are waiting for pizza, and Alec is screaming.

Thanks for everything everyone. Thanks for coming up to visit Luskey family! It sure helps break up the monotony (sp?) of this hospital!

Take care all. I will let you know more as I do.

Sunday, September 4, 2005 8:37 PM CDT

Yesterday was a wonderful day for Alec. I was really thinking that staying off of F was the way to go.

We upped the T last night and today was a miserable day for Alec. He was crabby, crying, fussing, etc for most of the day.

He was most happy when Aaron came to the room. We will see what tomorrow brings.

Aaron and I are staying at the "McRonald Donald" House tonight. I am so happy to see him.

I will update more as I can! Aaron is ready to go and watch his movie and I am ready to go and snuggle!

Saturday, September 3, 2005 11:51 AM CDT

We increased Alec's topamax(T) and decreased the felbatol(F) yesterday. Alec woke up this morning seizing out and crying. It was hard, however, to tell what is causing what because Alec has been known to do that before.

We did a bath this am and he was so happy!!! He has been in such a good mood all morning and all last night. I can handle extra seizures if he is going to be this good.

I am glad that we are dropping the F. We haven't increased the topamax by much (only 25mg) and the neuro is thinking that we may increase the topamax again tonight because Alec has been doing so well.

Not much more else to report. Brad went home to get Aaron and then they are both coming back up this weekend sometime. I am excited to see Aaron.

The scope is scheduled for Tues 1pm. I am hoping that we will be able to get out of here towards the end of next week.

I am also hoping to get a couple of knitting projects done this weekend also (or maybe just start some!) depending on how Alec does.

If anyone wants to call or visit, feel free!!!! We won't be doing anything other than just hanging out and watching tv!

Love to all!!

Friday, September 2, 2005 10:22 AM CDT

We are vacationing this weekend at Gillette's.

We meet with our team of docs today and all were in concensus of completing the scope and doing a biopsy of the stomach tissue. That is going to take place on Tuesday or Wed.

The stomach emptying test came back with Alec having delayed emptying. Normal is 12-60 minutes. Alec's was 90. There was talk about putting him on Reglan, but I am not sure what is happening with that yet.

We are also going to decrease the felbatol over a period of 3 weeks. Just over the weekend the neuro is going to drop it by 1/3 and increase the topamax every other day. Could be an interesting weekend!

We did give him a dose of the Nortriptyline last night and it has halped alot. Alec is so calm and relaxed today. I am glad because at least we can try it again. We are not going to be giving him any Nortriptyline anymore since we are cutting out the felbatol and bumping the topamax. We want to make sure that cutting out the felbatol helps the vomiting and irritability and we wont know that if he is on the Nortriptyline.

I am not sure what Brad is going to be doing yet. I would love to see Aaron this weekend, but we will have to wait and see what Brad wants to do. He may just go home until next week sometime. Time will tell.

Thank you all for the prayers and support.

Thursday, September 1, 2005 8:06 PM CDT

Another day has gone. I am at the Ronald McDonald House right now in Mlps. I am in need of a good night sleep.

Today's test went ok I believe. We haven't talked to any of the doctors about it today so we will see what they say tomorrow. I did talk to a couple of other doctors about the pH probe test but I don't understand it completely. I will talk to the GI tomorrow more in depth.

They have decided to put him on Prevacid again, but this time we are going to go back to the capsule. Not my fav, but at least we are off of the ketogenic diet now so we can put it through the bolus extension with as much water as we want.

The docs have been talking about possibly doing a scope of Alec's stomach and taking a small tissue sample to test for eocenophilic gastritis (sp?). I am not sure when that would take place due to the fact that he would have to go down to surgery to get it down and it is coming upon a holiday weekend. I don't think that would be something that would be high priority.

What else..........
We are currently having to suction Alec quite a bit. He is sounding terrible junky and has progressively been getting worse since last night. Brad and I are at odds about everything. I think that Alec is getting sinus infection again, especially since his regular pulmonologist thinks that Alec has a plugged sinus that needs surgery. Brad thinks that we don't need to do anything and that we need to go home. I, on the other hand, came up to Gillette's with the understanding that I was not taking Alec home until we had tried everything that we possibly could. (sigh)

I am ready to send Brad packing. He can just come and pick me up when we are ready to go home, or gas may just be so expensive maybe we will just fly!!

Anyway, I am off to go to bed. I need to be up early to beat rush hour traffic back to Gillette's. Have a great night (or day if you are reading this tomorrow). I will update more tomorrow if I find anything out.

PS. The one drug we talked about putting Alec on with the the neuro up here was nortripteline (sp?)

Wednesday, August 31, 2005 10:07 PM CDT

Today was another busy day. We had to shut Alec's night feed off last night because of a couple of tests. Today we had an abdominal ultrasound and an upper gi done.

Both of those test came back ok. We don't have the results of the pH probe test because the gi doc was out sick today. Tonight we started Alec's night drip at 8pm instead of 10 because he has to be NPO (nothing to eat) at 4 am for the test tomorrow. Tomorrow is going to be the stomach emptying test to see if/how much his stomach is delayed with that.

Last night we had to give Alec lorazapam because he was so upset and just wouldn't settle down. Today he was fussy from 9 am on. It took an hour this afternoon to get tylenol to give to him and it helped, but not much. About 4 I layed him down in his crib and he had a huge barium poop (barium from the upper gi). Almost instantaneously after pooping he went to sleep.

We got a call this afternoon that we got in at the Ronald McDonald house in Minneapolis so Brad is staying there tonight. It is good for him because he goes crazy staying up here in the hospital.

I will keep you all updated as I can. Feel free to email or call. We are in room 438B at Gillette's.

Love to all! Stephanie

Tuesday, August 30, 2005 10:56 AM CDT

Today we met with the GI doc. The pH probe is still placed until 3pm today. I am not sure if she is going to schedule other tests for today or not. I know that there was some talk of Alec having an upper gi study, but I have not heard of a schedule. The GI doc also talked about a scan test to look at his stomach emptying looking for delays.

I can't remember what I all said yesterday in my journal, so I may be repeating myself. The neuro and us talked about the possibility of the episodes being caused by delayed stomach emptying and then adding one of his meds causing him to be nauseus (sp??). We talked about keeping Alec here at Gillette's longer to drop him off of one of the seizure meds and then bumping a different one faster. We would be eliminating the felbatol and bumping the topamax. We also talked about giving him meds for the stomach emptying and then possibly a different med to help calm the gi tract.

We talk to the dietician about his feeds and the Neocate. I told her that the only way I was changing anything else on his feeds would be as a last resort effort.

I am currently in a battle between SV Home Med Equipment, Ins, Medicaid. We have a "loaner" patrol pump because of the problems with the Neocate not dissolving completely with the water. We have tried every method that we can think of or have been advised to do, but until we started using the patrol pump instead of our Embrace we had constant flow blockage problems. So we own the Embrace and I now have to get someone to pay for the rental of the patrol pump or payment of a new feeding bag every feed plus extra when the cassette gets blocked on the embrace. Plus, SV Home Med is giving us grief because we are using too many syringes for Alec's meds. Gimme a break! We wash and reuse them until they break! They would choke if we did stop washing the syringes and throw them away. We would have to have a supply of about 12x as many or more! Frustrating!!!

But, I better get back to the room. Alec has been having episodes, plus he keeps sneezing and his poor little nose is bleeding due to the probe. Poor baby!

On a good note we are getting to meet and see some new friends/families that we meet through CB while we are up here. I also ran into another mom I know from SF. At least I am not lacking on my socialization while we are here!

Please continue to pray that this stay can find some answers to better Alec's quality of life.

Monday, August 29, 2005 3:53 PM CDT

Good Afternoon Everyone!

I have been waiting all day to get on the computer, plus we have been so busy. The last couple of times I wanted to get on some kid was playing a game. This time I caught him coming out of the bathroom so I picked up the pace and took the comp!

The pH probe is in place. We met with the pediatrician this am, and the neurologist also. We had a long visit with the neuro about everything, which was very nice. We talked about possibly changing meds.

We will meet with the GI tomorrow after the study, which will be stopped about 3pm tomorrow.

The trip up was pretty uneventful. Last Fri we went the SV Children's clinic and saw Alec's pulmonologist & GI. We have been referred to an ENT because Alec is having some sinus issues. We may end up coming back up to the cities if necessary to see a peds ENT. Time will tell. Maybe it is something we can get looked at while we are up here.

Keep the prayers coming.
Love & Hugs,
Stephanie, Brad, Aaron & Alec

Thursday, August 25, 2005

EXTRA UPDATE!!! EXTRA UPDATE!!!!!
I have been meaning to tell you that Alec is listed on the Heartbeats for Mito website. Please visit it at www.heartbeatsformito.org Also, Alec has a very touching poem and photo album on the website too! www.heartbeatsformito.org/visit1.htm
Thanks Ann!

Also, don't forget that Alec is part of Eli's Angel Organization. I have been going to post links to both organizations, but I have been having troubles. I need to get in touch with Eli's mommy, Ann (a diff Ann), to ask for help.

Good Day everyone!

Time goes too fast!! Everyday I think I am going to update the website and before I know it, 10pm rolls around and I am bushed and ready for bed!

Last Friday was a good day. We took Alec in to get his picture retakes. I must say that I am now glad they had to be redone because I think they turned out much better. I guess God knew what he was doing, I just should be so crabby about it before the end result is in! The boys and I went to Old Navy and got some good deals and then it was off to therapy, which went well.

Saturday and Sunday the boys had a great time at the farm. Mom and Dad had an even more fun time at the wedding!

Sunday afternoon and evening was lazy. We just hung out around the house and later on watched Jungle Book with the boys before bed.

This week has been a bad week for Alec. He has been super junky. We have been having to suction a lot and he is throwing up quite a bit, with much of it being blood and mucus (I know, that is so gross).

Reminder - Laney Bear Care fundraiser on Friday night 7-9. Downtown Holiday Inn. I am going to be speaking, but I was advised by Tanya yesterday that I am limited to 3 minutes. How the heck can I tell everything in 3 minutes!?!?!?!?! So, I am in the process of cutting a lot out! We are looking forward to going and my friend Amy, Haley's mom, is also going to be talking. Haley's page is linked at the bottom of Alec's.

Please be in prayer for the following requests:
- Aaron's daycare situation
- our trip to Gillette's in St Paul
- for the drs we are going to see that God may grant them the wisdom for the ability to help us the best they can
- for Aaron - I told him that Alec was going to have to go to the hospital in St Paul and he started bawling because he didn't want Alec to go because he loved him. (He knows that any trip to the hospital for Alec could be his last)
- for Alec, for his quality of life and that there can be a simple fix for his problem and it is not just the disease progressing

God bless you all!

Wednesday, August 17, 2005

We are going to Gillette's on August 29th. I am not sure how long we will be up, but I am sure that we will be heading up on Sunday sometime. Brad and I are debating whether or not to both go. If just one of us goes, it will save us hotel room costs and meal costs, plus extra daycare costs while Aaron is at my mom and dad's during the week. Alec will be admitted into the hospital to have these tests done and only one parent can stay with the child. I am just excited and ready to go!!!

Last night we went to the Turner Co Fair. Aaron got to go on some rides and was happy about that. About the time that we were going to finish up with rides, Alec starts screaming. Aaron's bawling because everybody else but him is getting on the carosel (sp?) - Brad was getting the tickets - Alec is crying and has poopy pants oozing out through his pants. I sat down on a bench by some people and within 5 minutes they all split. I did get a couple of pics on Aaron on a ride that I will have to post once I download.

Alec is continued to have vomiting issues with blood. His nose has also been bleeding. We don't have pool therapy this week and I have pics rescheduled at Penney's Fri AM. To all who read this. NEVER, EVER, EVER go to Penney's to have photos taken. This time, they called and told me that the 3 poses I chose were out of focus and wanted to know if I wanted to chose a different 3. HECK NO!! If I wanted those poses I would have chosen them to begin with!!!!! Morons. I shouldn't even go back and should just request my money back. That idea is getting better and better!!!

Aaron is doing well. This week is his last week at Rhonda's. I know that he will miss her place terribly as will we miss her. Aaron will be starting swimming lessons on Sept 14 and he is anxious for that. He has really been into watching Animal Planet lately. The other night we watched a water buffalo give birth. A few days later he asked me how cows have calves. I told him the same way the water buffalo did on Animal Planet. His response: Out of it's butt?? Beware the next pregnant person we see and my son asked you when your baby is coming out of your butt!

I am leaving you with a few pics. They are oldies, but goodies! To all who are stopping by, please sign "HI" in the guestbook!! I am seeing lots of hits on the site, but few guestbook entries!!!

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Oh yeah! Laney Bear Care is having their "Legacy of Inspirations" Fundraiser on Aug 26. I am going to be speaking at it. If anyone would like more info, please email me or leave me a note in the guestbook and I will get you what you need!!

Monday, August 15, 2005 12:09 AM CDT

HI All! I can't believe it has already been 1 week. I am going to try to get back to my updates every other day or more! So much goes on!

I have not heard from Gillette. I am getting so frustrated with everything. Last week Alec's sinuses started bleeding. He has been major crabby. So the person I was dealing with at Gillettes had to leave for an emergency and obviously she is irreplaceable because nobody else could help me because she was gone. I have no idea when/if we will ever go up there. I called into the Children's Clinic here on Friday am because of the bleeding sinus issue. I also said that Alec was vomiting up blood (from the nosebleeds) and they told me, well, that is not Dr Carver's (pulmonologist) issue. ARRRRRGGGH!! I had a mental breakdown and they decided that they could "work Alec in". So, we say Carver who tells us "Alec is refluxing and he could have a sinus issue due to reflux" I also mentioned the issues with Dr Neidich and to make a long story short, Dr Neidich would be happy to see us. So after a chest and sinus xray, something is wrong with Alec's right sinus (infection). The dietician came in to change Alec's feeding schedule (haha, we already tried that!) so they decided to change him over to Neocate One Plus formula. We did see Dr Neidich briefly and finally got out of the clinic around 12:30-1pm (I went in at 8:30). Thankfully, Brad came in and met up with us because I also had Aaron. Aaron decided he was going to wear his "cowboy boots" (snow boots) and cowboy hat. We had people chuckling at him everywhere we went.

Alec's issues still arent resolved as he still wont handle full strength formula. He also seems a little more junky in the throat, but that could be from the sinus infection or from the change in the night drip with his feeds. I should probably get him in to see an ENT dr. We are supposed to go back and see Carver and Neidich on the 26th so we will see what happens in the meantime.

I am thinking that I am going to call up to Minneapolis Children's today and see when they can get Alec in. These reflux and crabbiness issues are going on way to long. I have decided that if something happens bad enough to have to go to ER we will be going to Minneapolis ER.

I am adding pics at the bottom of the page for you all to enjoy. I will also put some in the photo album if I have time!

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Turk Wakeboarding

Aaron Tubing (no Grandma, we didn't go fast!!)

All three boys sacked out on vacation!

Aaron learned how to jump into the water and float with his life jacket.

Aaron & Grandpa picking up sticks for the grill.

Our naked cowboy!

Monday, August 15, 2005 12:09 AM CDT

Monday, August 8, 2005 4:02 PM CDT

We are back from our vacation! It was a wonderful relaxing week that started off stressful!

We were on our way up and my uncle blew a tire on his boat trailer right outside of Dawson. WE ended up picking up my youngest brother and 2 cousins in Montevideo. While we were unloading and rearranging, I collapsed the kid kart. In doing that I noticed we only had 1 AFO. Since we just got them in May I was pretty sure that insurance/medicaid was not going to cover a new one. They are $1000 a piece. So with the help of my Aunt Lisa, Brad and I called everywhere we were from Thurs PM until Sat am. Aunt Diane even ran over to HyVee for us. Our last phone call to Penney's where we had gotton pics taken the night before we scored! They had it and my Aunt Diane ran over there and got it. Thank you Diane!!!

Aaron loved being out at the lake. He learned how to jump into the pool with his life jacket on. He was swimming and floating around all week. We were all impressed.

Alec did much better after we started a night drip on Tues night. After 2 days of crying he took a 5 hour nap on Wed. The week was much better after that!

I got a lot of knitting in. I finished knitting my poncho, did a hat for Aaron, and did a couple of scarves. As Brad would say, I now have the needle shakes because I haven't been able to knit yet today!

Yesterday we went to Brad's parents house for supper. On the way home, Aaron asked "Why don't cows swim?". I told him it was because God didn't make cows to swim. "Why" I him to ask God. Aaron's next question was "Do we have to drive to talk to him?" HAHA.

I got a call last Friday about us going up to Gillette's. We are supposed to be going sometime the week of the 15th. I am anxious and excited to go. I will have to report once I get the phone call that lets me know what day, etc.

I am sure that I have more to tell to all of you, but it is slipping my mind today! I will be posting pics once I get them downloaded. Have a good afternoon!

Friday, July 29, 2005 10:52 PM CDT

Good evening all!

We are to be heading on vacation tomorrow am. I can't wait to go!!!!! Aaron has been telling people today that he is going on vacation "after bed". Too funny!

Alec had therapy and pictures today. Therapy went awesome and pictures went pretty good. I will have to scan them and post them when I get them back.

I haven't done a whole lot of internet digging on what Dr Renaud's results showed because I haven't had much time. Too busy running everywhere and packing things up!

Enjoy your next week everyone!

Love and Prayers,
Stephanie & Family

Wednesday, July 27, 2005 3:08 PM CDT

I talked to Dr Renaud up at the Mayo Clinic earlier this afternoon. The test from Buffalo showed the Alec has Complex IV Deficiency, which is a mitochondrial disorder. Right now Mayo Clinic is testing Alec's skin for Complex IV deficiency to confirm those results. I don't know much more than that, but I plan on doing some internet research and will pass it along.

Thank you for your prayers!!!!!

Tuesday, July 26, 2005

Good afternoon everyone!

Well, Alec had therapy on Friday and before we left I decided that I would stop and pick up our formula, but I had the formidable (sp?) task of trying to find our WIC packet in our paperwork disaster of a house or in the piles in the van. I looked for an hour with no avail! We sped into therapy, because by now we were late, and we all stunk and were sticky because there was no time for bathing before we left! I was so digusted with our mess I decided to clean out the bedroom in the basement and organize and throw. I worked on it for 8 hours on Fri and 6 hrs on Sat. I threw away 3 45 gallon trash bags! I am sure the garbage man was excited when he saw that on Monday! So, my organization is getting there!

On Friday appx 4:40, Alec has an episode and fresh blood appears in it. So, I am on the horn to the drs office. Dr Neidich put him on the carafate. His comment was "do that until we go to Gillette's." Anyway, so I restarted the carafate and I dropped his feeds down the 1/2 strength. I didn't increase feeds again until last night and he had an episode the am. We had to give him Lorazepam Sat, Sun, and Mon due to excessive crying, crabbiness, and seizures. I don't know if it was because of the 1/2 strength or not. If he continues to have episodes on anything over 1/2, I am probably going to keep him at 1/2 and start a night drip. I will know more once I talk to Gina tonight when we get home.

The wedding and dance was a blast. I was going to post pics, but I forgot my camera at home today. Aaron was too cute. On the way out of the wedding to the van he asked Turk for a "piggy-bank" ride. Becky watched Alec for us during the wedding. Thanks Becky!! At the dance Aaron had so much fun running around and dancing with all of his day-care friends that were there (It was Rhonda's son's wedding). And of course, he was flirting with all of Rhonda and Leon's daughters!

Sunday was Kayd's birthday party. It was fun also. It ended up cooling off so we were able to bring Alec along. As soon as we left the park with the boys, the sun peeked out. God planned our afternoon perfectly for us!!

Last night Turk and I were on the horn getting all of the food we were assigned prepared for our vacation next week. We have to make 4 batches on potatoes, 24 sausage patties, and brown 2 lbs of sausage. Well, I get the first batch of potatos done and Turk is just finishing up the first package of sausage, I pulled out the foodsaver to start the process. Foodsaver doesn't seal. Great. So at 7:45 Turk and Aaron head into SF to buy a new one. After they got home we got both boys to bed and started over again. We were finally done a little after 10! But, it is done!!!!

I talked with a triage receptionist up at Gillette and the way it sounds we are going to be admitted up there. Once we are admitting we will be doing a neuro, gi, and development consult. I am so anxious to get this ball rolling. Gillette is supposed to call me within the next couple of days with an approximate time. And, of course, I will let you know as soon as I do! And NO, we have not heard anything back from Mayo in re to the biopsy that is being done at Buffalo. I am going to have to call and complain again tomorrow. Do I want to pursue a trip to Atlanta to figure this out if the frozen biopsy doesn't report anything???? Good question.

Have a great day and say some prayers that God blesses Alec with a good vacation up at the lake next week. And one more request for our warriors, please say a prayer that Alec's cooling vest arrives this week. Love you all!

Thursday, July 21, 2005

Things have been going ok. Last Friday I took Alec in to see Dr DeHaan for a well baby check. I asked him how he thought Alec was doing overall on the whole of things and he responded with he didn't think that I would be standing here today with Alec.

Alec's condition has not changed. He is actually having more episode during the day. I should turn his feeds down to 1/2 strength, but he throws up anyway, so he might as well vomit full strength and have it dumped back in.

Saturday Turk and I volunteered at Jazzfest with Haley's parents and we went out to the Timberlodge afterwards. We didn't stay out late because we were all so tired from the sun, but we had fun anyway!!

Sunday was Aaron's sunday school program. He of course didn't want to go up front and then when Brad got him to go up he just stood up there. He got to stay at Aunt Diane's Sat afternoon while we were at Jazzfest and they went to the pool and McDonalds play place! I know that he had a good time! After church on Sunday we went to a "Play Days" rodeo benefit for a guy that lost his thumb in a roping accident. Aaron was in hog heaven being able to ride a horse. You will all have to check out the pic in the photo album! I am thinking about getting it framed!

Alec's therapies have been going well. He has been eating soy yogert for Jane, his speech therapist, and Patty (PT) brought out a gait trainer with head supports to work with today. Gina videotaped it for me and I can't wait to go home and see it!!

I got all of Alec's records up to Gillette Children's. I talked with one of the intake people up there to let her know she should have received the paperwork and that there was no way she should have missed it because it was in a box! She (the receptionist) asked if he was the one with the black stuff in his tube (Must have made a memorable impression!). She made the comment that she was glad the paperwork was there because she had told a couple of Drs about Alec and they were waiting for that paperwork. I am hoping it is a good sign!

We have a wedding on Sat and a b-day party on Sunday afternoon.

DON'T FORGET TO SIGN THE GUESTBOOK!!!!!!!!!!

Tuesday, July 12, 2005 7:51 PM CDT

Good evening everyone.

We went camping last weekend down at Lewis & Clark in Yankton. All in all it was a very fun weekend. On Saturday it was windy enough that Alec went down to the beach and layed in the shade for a while. We spent almost all of Saturday out on the boat on at the beach. Turk took the boys up to the camper in the late afternoon while I water skied. I think my soreness has finally gone!!

Alec is still having episodes daily. We went in a saw Dr DeHaan yesterday. We ended up cutting Alec's feeds down to 1/2 strength. Nothing has been changing. Tonight when he was vomiting (through the tube of course) the syringe was vibrating. it was really bizarre.

I am waiting on Alec's medical records and then we are forwarding them all to Gillette Children's. I am hoping that we can get it soon. Everytime an episode occurs I contemplate driving up to St Paul myself and going to their ER. Please pray that we are able to be admitted up there soon and that the right doctors reads his records.

Aaron is at vacation bible school at nights this week. He is so tired. Tonight on the way down Alec woke up and started seizing out. He was having a bunch on crying seizures. Aaron is bawling because he is so overtired it isn't funny. So once we are at church I have two screaming kids. Alec's eyes are purple from crying and Aaron is crying attached to my leg. Let me tell you I felt like crying myself!

Anyway, not too much else to report because nothing has changed. Oh yeah, have you checked out the new pics??? The one at the top is my neice Alyssa. Alec was fussing until Alyssa started pushing him around, then he was all smiles!

Wednesday, July 6, 2005 9:14 AM CDT

We are still out of the hospital. I took Alec in to see Dr Day since Dr DeHaan was out. He was going to talk to Dr DeHaan today about us getting a referral to somewhere else. By the way, Dr Neidich is out all week which is why I am talking to Alec's primary.

Dr Day said the only way to get Alec transferred as soon as I want would be for us to go to the ER of the hospital we are going to and get admitted. Time will tell I guess. I just find it so weird that nobody else thinks that the stuff coming out of his stomach is a huge priority.

Our 4th of July was pretty low key. We went to Inwood to the parade. Alec slept almost the whole time, which was good because we have been getting up all hours of the night due to congestion, coughing, vomiting, and suctioning. We went to the ball diamond in Harrisburg to watch the fireworks with our neighbors. It was a fun time. I put Alec up to full strength formula last night and he seemed to kind of tolerate it. I am pretty sure that the vomiting and wretching last night was due to the meds, but one never knows!

I do have a call into Dr DeHaan and I am hoping to hear from him soon. I apologize if this journal is all over the place. My brain feels so fried after this last week and a half.

I have added a pic of the stuff coming out of Alec's stomach. You can see the little black pepperlike stuff in it. If you are going to be grossed out, don't look.

Image hosted by Photobucket.com

Saturday, July 2, 2005 4:50 PM CDT

We are home from the hospital. I was sick of it so I thought that we would come home for the weekend. I am sure that we will be back there next week unless we see some sort of vast improvement of Alec.

I requested that Dr Neidich be called this am about Alec's vomiting, etc. I was told that we have done all the testing we can do. I wonder how much the "lay him on his left side" test cost us!? I am supposed to follow up with him in 2 weeks, but I am going to call on Tues and request to be sent to see a GI specialist at Mayo.

You all have a wonderful & safe weekend. To my CB family and friends: I know I have not been signing guestbooks, but please know that I check on you all everyday.

Thursday, June 30, 2005 10:30 PM CDT

******UPDATE FRIDAY AM******

Dr DeHaan and Dr Carver came by a little bit ago. We are going to adjust Alec's feeds and see if we can get the GI problems figured out. The drs think that once that is fixed the congestion should be better. They have said that we may go home this afternoon depending on how things go. Brad and I have decided that it would be better to stay in the hospital and figure out the problems than to try to do it from home. Dr Neidich is supposed to be in sometime.

We are still in. Dr DeHaan came in this morning and we bumped his feeds up to full strength. We also switched his steriods, benedryl, and antibiotics to oral (well, g-tube!). He wanted to see how things went.

I didn't think they were going too bad, but we have ended up having some vomiting and choking. I suctioned him with the 6pm feed and Brad suction him about 4 times he said with the 9pm one. RT came and sucked a ton of gunk out of his nose. I guess we will just wait and see.

You all will have to check out the blooming basket above! It will only be on the website for a couple of days longer. Don't forget about the hugs and those of you who stop by have to write a "hi" in the guestbook. I can see the # of hits on the site daily and I know that not all of them can be Carrie and Jodi!

Aaron is staying with my mom tonight, but he is started to get sick now. He went to bed at 7:30 which is very unusual for him. Turk and i are supposed to go to a wedding tomorrow night, but we will see what happens.

Until next time.
Keep the Faith!!
Stephanie

Wednesday, June 29, 2005

Quick update for you all.

We are still in the hospital. Yesterday Alec was still pretty gaggy, but the snot coming out of his vent was so thick it plugged the tube so I can see why! The drs haven't said anything other than we are just going to watch him. He is still on steriods, antibiotics, benedryl and nebs. I told Dr Carver yesterday that we could do all of that at home and his response was that we could, but we also have a bad habit of being discharged and then returned within a few days. I guess I would rather stay than go home and come back.

This morning Dr DeHaan turned Alec's feeds down to half strength. I have not talked to Brad for awhile so I am not sure what is going on. I am working today.

Tuesday am when Brad got Aaron up to go to Rhonda's Aaron's 1st question was "where is Alec?" When Brad told him he was in the hospital he just started sobbing "I want my brother to come home". Then last night we were leaving the hospital and Aaron started crying again because he wanted his brother to come home with us. Last night later on, Aaron & I were talking and I told him that Alec was going to live with Jesus someday and of course, the tears started coming again. He kept saying I love my brother, I don't want him to go live with Jesus. Aaron asked me when Alec wasn't going to be sick anymore and I told him when Alec goes to live with Jesus, Alec will be healed. Aaron got all teary and said "But I like my brother". So sad the day we go to the hospital and Alec never returns home with us. Every hospital stay I always wonder is this it? By God's grace, I hope the time is not soon.

I did talk to Dr Renaud about Alec yesterday. Apparently Buffalo sent the muscle to Baylor to complete a mitochondrial DNA test. Buffalo never ran the respitory enzyme chain test. So now Buffalo is having to run that test and it will take 3 weeks or more. So, so frustrating. Although the mitochondrial test ran at Baylor did not show any of the 12 more common mito diseases (keep in mind Dr Renaud told me that there are 16,500 types - Alec forsure does not have 12 of them). I feel like I am at a standstill as to what I am going to do next because I have been waiting for these results. I guess as Tanya says we will just be "in the meantime".

Now, on to a funny story!! Last Thursday Brad went out to Rapid City to work at his brothers house. Thursday night about 11:30ish we lose power. I am not a good "alone" person. I jumped a million miles when the electricity went off because the radio and light came on on the blackout buddy we have. I couldn't tell if the neighbors had lights and I didn't want to call because it was so late. Plus we didn't have phone service because all we have is one cordless phone. So, thankfully I had one bar of battery left on my cell and I called 911. I was truly freaking out because I had no idea if someone was in our house. So the 911 dispatcher called the cops and sent a deputy over. (Our flashlights were all in the camper). I called xcel energy after that and they told me that 11 houses were out but they expected it to be fixed appx 1:50am. Lovely. Thankfully all of Alec's med stuff was charged, but we should invest in a battery backup. I couldn't sleep after that, but the power came back on about 1am.

Well, I will be updating as I can. I had better get back to work. My brain break is done!

Tuesday, June 28, 2005 10:59 AM CDT

Hi All -

I will start with the hospital update since I am sure that that is what you are all waiting for!!

We got up Sunday night/Monday morning (however you look at it) around 1 am from Alec choking. We had to suction and we ended up being awake off and on all night having to suction his throat, mouth, nose, and give nebs. At 6am he had a fever of 102. I gave him motrin and he didn't run a fever the rest of the day (that I know of). His home nurse said he was fine most of the day and then she called me at 4:30 wondering if I should go to the pharmacy and get an expectorant due to his congestion. Well, I called DeHaan's office and he said I could use benedryl every 4 hrs but if he didn't clear up to bring him in on Wed. I got home at 5:30 and noticed Alec's breathing was very rapid and he was panting. I pulled the O2 concentrator out of the closet and hooked him up. The 02 didn't make much difference.

We had a meeting with a possible new daycare for Aaron set up last night, so we decided to go and meet with her and then take Alec into the ER. I know that some of you are thinking "What, you did that first!!" We did at home what they would have done at the hospital!

Anyway, Diane met Turk and picked up Aaron while I brought Alec in. The did a "zopenex??" neb treatment and chest xrays. His white count was high. After Alec fell asleep he sounded pretty good and the ER doc gave us the option of going home or staying. We opted to stay because knowing Alec we would have gone home and ended up right back in. Staying was a good option because by 6am this morning he was sounding crappy again. WE had to go back down for a chest xray at 7am and i had to suction him 3 times between 7-8. Last night we started IV antibiotics and this morning Dr DeHaan came in and we started him on benedryl and steriods (both through iv). Dr Carver (pulm) is going to be consulting with us this afternoon/evening after clinic, and I figured as long as we are here, Alec needs labs drawn for his topamax and felbatol levels. I also ended up leaving a stool sample last Friday at Neidich's office because alec has had diarrhea (not excessive though) so we are going to find out those labs also!!

So.....we are just hanging out. Right now Alec is sleeping and he was in much need of it.

About last week......the video swallow study didn't show anything. The speech therapist messed with his mouth and he was really crabby about that because his first top tooth was halfway cut from the day before. Then she scratched him with her rings/jewelry on the back of the leg when they were adjusting him. So he was pretty pissed and refused to swallow anything that was in his mouth. They ended up having to finger out the barium crap. As soon as we left xray he was swallowing up a storm and happy as a clam. So we are still on stage 1 baby foods as he tolerates.

Child life is here. I will update more later tonight. I have interesting stories to tell from the weekend.

Monday, June 27, 2005 11:54 PM CDT

Just a quick note to let you al lknow that we are in the hospital. We came into ER around 8pm this evening. Hopefully it will be a short stay. Alec is just having some respitory issues. I will update more once we get settled. We just got up to the floor.

Stephanie

Monday, June 20, 2005 8:59 AM CDT

Hi Everyone. Nothing new and exciting to report from us, which is a good thing!

Where does the time go?? Last week we didn't do much of anything other than work and home. Aaron and Alec have both been great.

We were at my sister-in-laws rummage this past weekend and the boys spent quite a bit of time outside. Aaron loved playing with his cousins and playing with the hose and water! I think he would live in a swimsuit if I let him. Alec seemed a little more snotty/congested, but I am sure that it was from being outside so much. A dose of benedryl and he was much better!

Saturday night I went out with friends. I had nurse cares for Alec and the little pipsqueak fell asleep at 7pm or so (he never does such things when mom and dad are around!). Aaron went over to Aunt Diane's and had a blast going to the park and "fishing" in the bathtub.

For Dad's Day we had a good time. I got up to give Alec his morning feed (an hour late!), shut it off at 7:30 and thought I will just lay here for a little bit longer before getting up and getting ready for church. Well that little bit turned into a long bit! 8:45am we woke up. We didn't quite make it! We went to my mom and dad's for a late lunch. Afterward Brad and Alec napped while Aaron and I went in the hot tub with mom. Aaron also had to go and check out his baby kitties, and the cows and watch grandpa do chores. Aaron had way too much stuff to do to nap, so by early evening he was a bit crabby.

We went to my Grandma and Grandpa's to eat supper. It was a very fun and relaxing day.

I can definitely say I am ready for a nap now! This week Wed Alec has a video swallow study and then an appt with Dr Neidich afterward. I did talk to Dr Neidich's nurse on Friday about the black specks. It came back lab neg, which means it was not blood. Hello, I could have told the lab that myself. So, we will just wait until the next time it happens and see what decides to get done about it then.

Until next time,
Stephanie

Monday, June 13, 2005 2:22 PM CDT

Check out the new photos! I finally got a program and am playing around with the resizing options.

Alec's IFSP meeting went well. We have decided to rearrage his therapy schedule around and Karla from the Harrisburg School is going to start coming a couple of times a month. We have decided to drop a once a week of PT and (I think...I have to double check the paperwork) OT. They will now have one long joint session. Speech therapy will still come out once a week.

Alec seems to be doing better since we started the carafate. No vomiting/choking episodes. I will be anxious to see what the lab work shows.

Friday we found out that Rhonda will no longer be doing daycare. Her last day will be August 19. We are very sad and disappointed. I ask that you all pray that Aaron can be placed in an enviroment just as good as the one he is in now. We are very fortunate that we will be able to enjoy the summer with her. I know that God will take care of us.

We had a busy and fun filled weekend. Friday we got Alec's kidkart adjusted so that his hips would fit into it! I hit a couple of rummages on the way home and got a rocking horse, bike, snowsuit set and a couple of outfits for Aaron. Friday night we invited our neighbors to come over and play games. We did another night of guys vs girls and the girls are far behind in the winnings!

Saturday we went to Turk's aunt and uncles house to see another aunt, uncle, and cousins that were in town from Colorado. We had a wonderful potluck dinner. Sunday we went to my mom and dad's after church for lunch and then last night we went up to the ball diamonds to watch Harrisburg play Humboldt. Humboldt won 7-6 in the top of the ninth. It was a fun game.

Not too much else to report. Alec and Aaron both seem fairly healthy and for that we are blessed.

Thursday, June 9, 2005 10:50 AM CDT

I know you are all probably shocked that I have been updated almost daily!! I just had to let you all know about my fun day. It always seems once we get settled into a "typical" routine, God decides to add some excitement to our lives!!

Well, the home nurse called about 3 and was concerned about Alec's "grunting". When he gets irritated or really hot, he holds his breath and kind of goes "unh", "unh", over and over. I told her that I would meet her at the pool for therapy and decide whether or not for him to have therapy. When I got there, Alec was bright red and sweating hot. (For him to be that hot is NOT GOOD!). So I decided to can therapy for the day. I put him in the van with the AC on high to cool him down. As I was packing his stuff up, I asked the nurse if she had brought the suction machine with, which she had not. (We could bring the suction machine with us through 49 of the 50 states and not use it, but it we don't have it for the 50th, we will need it! That is just the way our lives work!!) I needed to go back to work to finish up some things although my insticts did tell me to go right home because I would need to suction machine. I didnt listen.

While on the way back to work I called Interim to see what nurse was scheduled for tomorrow (Today-Thurs) because I had called on Tues and they had nobody scheduled. So, I get "Yeah, we were going to call you. We just found out it is not covered" Ok it is like 4 something and the office closes at 4:30???? Were you ever going to try to find someone????? "Someone will call you right back"

So, while we are going up I-29 to get to my office, Alec starts to choke. Lovely, I was thinking. I was about 3 miles away from the office, so we sped there and I ran in the door with him and told one of my co-workers to call 911. I was so irritated because if I would have had the suction machine I wouldn't have had to call and if I would have had a bolus extension, I might not have had to even get him suctioned. Well, while I am on the phone with the 911 dispacter (who by the way was trying to tell me all these things to clear his airway which would in no way help Alec and what to do if he vomits -ok lady, he can't throw up!! That is why we have this problem sometimes!!! If I had my suction machine I WOULDN'T HAVE EVEN CALLED YOU!!!!) So.....right before the deputy gets here, Alec has this huge wretching cough and clears himself. Of course by the time the paramedics got there I was just like, suction the rest of the crap out of his mouth and we will hit the road home. The one EMT commented on how calm I was. Well, when this becomes a daily occurance in your life, freaking out tends to not be accustomed anymore.

Oh yeah, while the paramedics were at my office, the owner of interim healthcare calls me. I just plainly told him that I would have to call him back because I was with the paramedics due to my having to call 911 to get Alec suctioned out.

So, I left the office without doing anything i went back there to do. I am sure that everyone was freaking out because I had to call 911 and because we weren't going to the hospital. When you have a hospital at home there is no need to go in and waste your time with drs that know nothing about your kid.

While on my way home I called interim back. How irritating. I basically told them that they are paid to have someone at my house 40 hrs a week and to not even schedule anyone is unacceptable. It was not like someone was sick or had a death in the family or anything. I told them that if they couldn't find anyone "qualified" enough to take care of him that since I had to take unpaid time off of work to stay home, Interim could pay me to stay home with him. Plus, I was so irritated about the suction thing anyway.

I picked up Aaron quick on my home because Brad wouldn't be able to be there in time. I was telling Rhonda quick what had happened. Aaron overhead bits and pieces and asked me what was going on. Then he started to cry because he had wanted to see the policemen at my office. Trust me child, be glad you weren't there!!

Anyway I felt like I was on the phone and in constant chaos from 3-6! Interim did end up having someone come out with the nursing care coordinated, but it is by no means a choice arrangement. I told them I was screwed either way because I had to work!

But, Alec is fine from the afternoon incident. Then we went into Aunt Diane's to drop off some mending for her later last night. While on our way back home Alec started choking and vomiting. I vented and suctioned him on the raod. We now have the black spore like stuff coming out of the g-tube again. I saved that sample to give to Neidich's office to process. Alec also woke up at 5am choking and vomiting. I am sure Brad and I were a sight! I was trying to plug the suction machine in upside down and I was not working, but at the time I would have sworn to you that it was the correct direction!! We really didn't sleep much after that. I talked to Rose at Neidich's office today and she called to get Alec in to see Dr DeHaan. I am sure if we do go in today they will tell us it is viral. Of course, if I do not take him in he will probably go in next week with ear infection or something!!

But, I have got to get some work done. I will write more about Alec's IFSP meeting we had this morning tomorrow. PS>>>>Dont' forget about the LBC Jazzfest stuff in my journal from June 8.

PPS!!!! Happy Birthday Dad (Grandpa Tom)!!

Wednesday, June 8, 2005 12:36 AM CDT

Good afternoon.

Our weekend camping extravaganza was good even though it was rainy and wet. Alec seemed to tolerate everything pretty well. We incresed his felbatol starting on Thursday to 2 ml 3x day and are then going up to 2.2 ml 3x day. The increase seemed to cause him some sleep problems. He napped for 3 hrs on Thursday morning and then he napped a total of 1 hour the rest of the days. Aaron of course loved being outside with all of his cousins. He even got to go fishing with Grayson (and Darrin, Holly, and I). We didn't even get a bite in the 3 hours we were out, but we had fun.

ON A SIDE NOTE: I will post new pics once I figured out how to resize them. Any hints/help would be appreciated. Just email me.

Brad and his brothers caught one walleye and didn't even weigh in their fish for the tourney. At the drawing Alec won this cute bright green stuffed frog. It is perfect for him.

I am anxiously awaiting the arrival of Alec's cooling vest. Now with the weather getting warmer it is going to be necessary in order for us to take him outside, especially while being on the topamax.

Did you see Alec in the "Prayer of the Children" video!! KELO must have been having problems Sat night at the beginning of the broadcast because only the first clip of the video was shown. We were disappointed, but we were excited to see him in the video the next day. He looked so sick in that picture.

Alec has sounded a little more snotty the last couple of days. He ended up vomiting last night right after his 9pm feeding and meds. We just vented him and didn't need to suction him. Formula was just pouring out of the top of the vent. Aaron had been in bed for about 10 mins and I yelled for him to get a towel out of the bathroom. He was like a bullet running to the closet in the bathroom (with the lights off too!) and then to the living room. He is such a big helper!

Then last night around 3am last night Alec was sobbing in his crib and seizing out. Brad rocked him for a bit and then I got up and he had a fever around 100-101. I ended up giving him tylenol, motrin, and lorazapam. I didn't know if the seizures caused the fever or the fever the seizures. If I had to guess, it would be the fever causing the seizures because he rarely gets up during the night anymore since we started the melatonin. I worried a bit too because his fever went up to 103. About 15 minutes after the lorazepam his seizures lessened and his agitation settled. It took about a hour for the fever to start to go down. This morning at 6 he was cool to the touch and Theresa, our nurse today, said he has not run a fever so far today. I just pray that it was nothing major causing this.

If anyone is going to Jazzfest this year or is interested in volunteering, please continue to read. Tanya, with Laney Bear Care, is looking for around 30 volunteers for the weekend. It is July 15 and 16. People would be assigned in 2 hour time blocks or so and would be at the gates asking for donations for Jazzfest. Laney Bear Care would get a portion of the donations raised by the volunteers for that organization. If interested you can call Tanya at 275-6301.

Please continue to pray for Keith's family. Pray for Alec that he can continue to stay healthy.

Tuesday, June 7, 2005 10:11 AM CDT

Good Morning everyone.

Will you all please take a moment to pray for Keith and his family? I adopted Keith through the Prayer Bears group. Keith earned his angel wings last night and is now in heaven cancer free.

www.caringbridge.org/ga/keithskorner

Thank you all!
Stephanie

Tuesday, May 31, 2005 1:07 PM CDT

You will all have to watch the Children's Miracle Network Telethon this weekend. Alec is scheduled to be broadcast in the "Prayer of the Children" video on Saturday night around 8pm and Sunday morning approximately 10:42am. It will be on KELO. We are going to be camping and I am not sure if we will be able to get the station in in our camper. Could someone please record it for us? The CMN office also told us that we could get a copy from KELO too.

This past weekend was busy as usual. Alec has been wonderful for the most part. He has his fussy times and they seem to be more frequent lately. But, he has loved being outside and he especially loves it when we are out around all of the neighbor kids!

Friday I took the boys down to my mom and dad's and picked and froze rhubarb. We also went to Knobloch's greenhouse and got flowers. Later on that evening Kyle and Amy (our neighbors) and their kids came over to play. I got this great idea of putting together the 3-seat swing I got for mothers day. Somehow, I roped Amy into helping me! We got it most of the way done and then Brad helped me put the rest together on Sat. Thanks Amy!!!!

Saturday we had Turk's dad's retirement party. It was a lot of fun. We stayed out in our camper. Sunday we didn't do much of anything. We did get some of the rock moved around up front and we got the rest of my flowers planted. Sunday night we went over to Kyle and Amy's house and played Sequence. We played boys vs girls and we are currently tied at 2 games apiece. We can't wait until we play again!!

Monday we worked all day getting things ready for this weekend and we also made it out to Turk's mom and dad's and then out to my mom and dads! Brad is bringing home the camper tonight and all that we have let to pack in it is clothes and a few odds and ends.

We are planning on leaving Wed night so I probably won't update again. Please pray for a great weekend for my boys. Last year at this same time my grandma had surgery for breast cancer, my dad was hospitalized for a blood clot, and my mom (who had Alec overnight) had to bring him into the hospital. We can only pray this weekend goes better than last year!!!

Talk to you all soon!!

Wednesday, May 25, 2005 10:07 AM CDT

As I promised, my update:

Last Thursday we saw Dr Blake, the developmental specialist. Nothing too extravagent to report from that visit. He thought that maybe if we could ever get the seizures stopped one nevers knows what could happen developmentally for Alec. Dr Blake said that once Alec outgrows the Infantile Spasm seizures, the new seizures that replace them could hopefully be controlled with some medication. (With IS seizures the child usually outgrows them during the ages of 2-5, but are almost always replaced with a different type of seizure). Brad and I have accepted the fact that we have a child that will never be seizure free. Alec also started having IS when he was 2-3 weeks old and you typically don't see those type of seizures in children until 2 months of age. Alec may always have IS, and he may not live until the ages when they are "typically" outgrown. Of course, we would love what Dr Blake said would happen, but I guess you could say that we are not real hopeful. We are going to be scheduled to see Dr Blake again in 6 months. Dr Blake also said that he thought Alec's pool therapy was great for him and to continue it. He also thought Alec was getting great therapy cares - PT 2x weekly, OT 2x weekly, ST 1x weekly, OT outpatient 1xweekly, and Pool Therapy 1x weekely. All I know is that it is a miracle of God that Alec receives what he does. His next ISFP meeting is coming up the beginning of June.

Last week we spent some time getting our camper ready for our first outing. While I was hauling to and from the house to camper, Aaron was pushing Alec around the yard. Alec loves it when Aaron pushes him. He is always all smiles! Of course, Aaron usually takes Alec for a little "off-roading" through the lawn!

Friday (the 20th) was a big day for us! I got up early and packed up all the rest of the stuff that was going to the camper (we took the camper to Lake Pahajo Thurs eve) and all of Alec's medical stuff and loaded it all into the van. I then got Aaron ready, gave Alec a bath and got him ready and by a little before 9am we were off. We stopped at Walgreens and picked up a couple of prescriptions, we to WIC for our appt at 9:30, then we to Spaders after that to pick up some cord that Brad needed for the camper. Before we went in we had a catastrophe with Aaron having the van door shut on his thumb. We then made it into the store! Thank you Tony for helping us navigate through the store and helping us all load up into the van!! We then went to Turk's Aunt and Uncle's house to drop off some fresh asparagus and then to Dr DeHaan's office to get Alec's 15 month shots (since he is 16 months old). After that we went through McDonalds for lunch, then to the post office to mail some things for one of our CB friends, Wyatt. Then to HyVee to pick up marshmallows so we could have s'mores and then we went to Hills for haircuts for the boys. And we even made it a half-hour early for our 2:30 appt! After our haircuts I stopped by my mom and dads to hose Alec off in their shower and then we made it out to the camper.

While out there, I got Alec out and set him by the camper door so I could haul the van load of stuff. Aaron is trying to get his toys out of the van and then Alec starts to cry because he is so tired from the day's activities. My cell phone is ringing, but I don't answer it. I run back out to the van to get Aaron out his toys and find that a stray dog that the neighbor campsite had been feeding had jumped into our van and tore into my grocery bag with the bread and marshmallows. (I was quite po'ed at this time!!) So I had to call Brad to have him pick up marshmallows and we had bread pieces all over the van. I felt like I was in a Chevy Chase movie "National Lampoon's Camping Vacation". Well, Brad finally made it out and we did end up having a wonderful weekend. Our neighbors across the street stopped out for a fun visit and my mom and dad and brother Ethan also stopped by.

Alec is now a part of a new organization, Eli's Angels. We are so excited about this and just received our first package yesterday. We have already read the new book three times!! Anyway, you will all have to click on the link to read more about it!

src="http://img.photobucket.com/albums/v291/Akurtz1974/Boyangel.gif"height="100"
width="100"

Eli's Angels is a
non-profit for children affected with Mitochondrial or metabolic illnesses

Not too much else is new. Anne ending up watching Alec for us yesterday and it was so good to see her. I know she enjoyed Alec too! She commented on how he does not like to lay like a baby in your arms anymore. He thinks that he needs to up facing everybody so he can see! I will have to take some new pics of him!

But, I wish you all a wonderful day!!!! We love you all and love it when you sign the guestbook. I swear I check it 20x a day to see if there is new entries!

Monday, May 23, 2005 2:42 PM CDT

Here is the breakdown of what Dr Renaud had to say:

Clinical documents for Alec Donald ldeker

May-15-2005 -Miscellaneous, Deborah L. Renaud, M.D., Child & Adolescent Neurology

CHIEF COMPLAINTJPURPOSE OF VISIT:
Test results.

IMPRESSION/REPORT/PLAN:
Alec had a number of tests performed on his visit March 16, 2005.

The CBC and differential was normal. The ALT and Creatinine were within the normal range, thus indicating normal liver and kidney functions. The CK was 95, and there was no evidence of muscular dystrophy. The screening test for disorders of glycosylation was normal. His uric acid was 3.2, and there were no abnormal purines or pyrimidines in the urine. His lactate was mildly elevated at 2.5 and the pyruvate was also mildly elevated at 0.22. This may be an indication of mitochondrial dysfunction. The alanine was slightly elevated, as well, at 441, suggesting possible mild chronic elevation of the lactate. The quantitative amino acids were otherwise normal, including the total plasma homocysteine, which rules out homocystinuria. There was a slight increase in glutamine in the urine; however, his plasma ammonia was normal at 29. The total and free camitine levels were normal. A sterol panel did not reveal any abnormal sterols. The urine organic acids had an elevation of 3-Hydroxy-isovaleric acids and trace amounts of 3-methylcrotanylglycine. There were no ketones. There were no other abnormal metabolites to suggest 3-Hydroxy-isovaleric acidemia. The biochemist had contacted me with regards to the possibility of biotinidase deficiency. I had contacted Dr. Bunch directly at that time, and she confirmed that biotinidase testing had previously been performed and was normal. She did, however, plan to repeat this. Alec's presentation would not be strongly suggestive of biotinidase deficiency. The acylglycine profile was normal. There was no evidence of abnormal mucopolysaccharides in the urine. His plasma co-enzyme Q level was normal.

I contacted Dr. Hyland at Horizon Molecular Medicine with regards to Alec's previous CSF neurotransmitter sample. This was available for further testing, therefore a 5-methyltetrahydrofolate was performed. This was normal.

Alec had an echocardiogram performed, which was normal and did not reveal any evidence of cardiomyopathy. His electrocardiogram had been suggestive of right ventricular hypertrophy, which is what had prompted the echocardiogram. In addition, an MRI with spectroscopy was performed. The MRI of the brain was essentially normal, and there was no evidence of any brain stem or basal ganglia abnormality to suggest a specific mitochondrial or other metabolic disorder. The NAA to creatine ratio was, however, low, particularly in the cerebellum, suggesting a possible decrease in the relative number of neurons. A possible small lactate doublet was also present in the spectrum from the right-sided white matter, which may be suggestive of mitochondrial disorder.

Alec had a muscle biopsy performed, as well. The neuromuscular pathology revealed type II fiber atrophy,
which is a nonspecific finding. There were some fibers of varying sizes. There was no evidence of inflammatory change. There was, however, a mild increase in paramesia1 fibers and fatty connective tissue. Stains for cytochrome, C-oxidase, and succinate dehydrogenase did not reveal any specific abnormalities. The frozen muscle was sent for mitochondrial respiratory chain enzymes and mitochondrial DNA. We would expect these results near the end of June.

SO.......we are still waiting for results of the muscle biopsy. We were told 6-8 weeks, but Wednesday will be 10 weeks. If any of you know how to translate this into "normal talk" please let me know!! Brad and I decided (mostly Brad) to take him off of the co-enzyme q10. We were supposed to be giving him carnitine, but haven't been because it was making him vomit. His levels came back at normal though. Now I have some new things to comb through and research.

I will be updated soon with what has all be going on with us! Have a great day!

Monday, May 23, 2005 8:37 AM CDT

I got a call from Renaud's office late Thursday afternoon. I was on my phone at the time so they left a message that they would be sending out a letter that day and we should have it on Monday (today). I hope that we do get it in the mail today, be seeing as they are sending us a letter and didn't call us with anything, I am guessing that the results are inconclusive. I will post tonight if I get the letter (or this afternoon if I have time to run home.)

Tuesday, May 17, 2005 4:05 PM CDT

Hi everyone! Sorry this is so late, but I have been swamped at work and at home. Actually my swampiness at home really boils down to me just wanting to be crafty at night! haha

We had a fabulous weekend. On Friday night we had some friends over. On Saturday I went to the "knit In" at the Pavilion in the morning and then Turk had Parade of Homes in the afternoon. We took the boys out to the Timberlodge for supper and used a gift certificate that we had gotton. On Sunday Brad had the parade again so the boys and I stayed at my moms after church for awhile. After we got home it was so nice I started to tear apart my flower bed. Alec absolutely loved it outside!! The boys and I also took a walk around to the back of our house (for those of you who aren't familier with our house, there is nothing behind us but the city water runoff. Stencil Construction is building a new develepment east of our area and they built a bridge over the runoff area to this grassy knoll). So we took the bridge across and threw out some wildflower seed. It rained yesterday and some today so I hope the seed takes and we have a wonderful bloom on the little hill!

Back to my craftiness, I went over to my Aunt Diane's house last week and am having her give me some sewing lessons. I made some beanbags for a beanbag toss game that Brad and I are making. I am still working on knitting my scarf. It is coming along. I will have to post a picture of it when I get it done. I am getting so anxious to start my next project, my poncho. My Aunt Lisa and my mom are trying to get my Aunt Mary Beth to open up a knitting shop and give lessons because she is so talented (I just want her to so I can get more free lessons! Just kidding Mary, I would pay you for your expertise!!)

Work for me has been so hectic lately because of a new program that they have decided I start using. It is a service management program that will allow me to have all of my service calls place in it. The goal in this is to relieve my desk of the pack of sticky notes that I go through in a week! Needless to say, organizing everything to get it all set up and then entered in as work orders has been crazy!

Aaron has been doing pretty well. We have been working with him on dining etiquitte, which he is doing a good job as far as a 3 year old goes! He has also been working on his letters with his leap pad and we have been working on them with him using his magna doodle. He is so proud to know the letter "d" as in "dog"!

Alec has been good also. His seizure activity has been wild. 75-100 per day or so. The nurse today took him in to the clinic to have his blood drawn for felbatol and topamax levels. I am interested to see what they come back at. I would like to take him off of one of those and also maybe off of the clonazepam. We have not had to suction him much lately. The last couple of times (which it has only been twice in the last week) it has happened after he has fallen asleep and then wakes up and seizes. It seems as though those seizures are causing him to choke. The look like the infantile spasms, but maybe it is a new seizure.

We bring Alec in to see Dr Blake on Thursday morning. He is a developmental specialist and we have been waiting to get in to see him since October of last year. I am interested in meeting him and see if he has any new suggestions for us.

I talked with Theresa, the nurse working for Alec today, earlier and she told me that Alec's therapist at the rehab center sent home a Josh Groban (sp?) cd with him because he loved it so much during his therapy today! So spoiled!

All in all, things have been going very well for us. Everyday I see how blessed we are. Miracles are apparent everywhere. Each day we have is a gift from God. I need to work on being a better mother. I have been so stressed out lately and have definetly been taking it out on the ones I love the most. Isn't it interesting how the ones you love the most get treated the worst sometimes? I need prayers for patience. I have truly been focusing on the love I have in my heart and trying to treat each day in that manner. Don't forget to tell the ones you love that you do love them. Be sure to give them an extra hug and/or kiss tonight!

Love you all!

PS. No word back from Mayo yet. Tomorrow is 9 weeks post-op.

Friday, May 6, 2005 3:12 PM CDT

My trip to the east coast was wonderful!! We all had a great time. Thank you Mary for housing us and being our tour guide!! We went to New York City for a couple of days and it was so fun. I can't wait to go back. We went and saw where the Trade Towers were and it was pretty intense. We also went to the Fire Department store at Rockefeller Center and met a fireman that was at 9-11. Very interesting. It was neat to be able to see and know what he was talking about. I can't even begin to imagine the terror that day.

While we were out there, my Aunt Mary also taught us to knit! I must say, we are fast learners - right Mary! Right now I am working on a scarf and then I have the yarn to knit a poncho. I have big plans this weekend to get that started. I have really enjoyed it so far and the thing that I like the most is that I can take it anywhere.

Mary also knitted a little blankie toy for Alec that can either hang on the kid kart or wherever. Alec really likes it! He was trying to grab the edges and was just staring at it. I will have to take a pic and post it once I get the time to download my camera.

We flew in Thursday early evening and I came home to a couple of surprises. Brad had put together the curio cabinet and him, Aaron, and Alec took my downstairs to see it and in the cabinet on a shelf he had a vase with some roses in it and a little balloon that said "Welcome Home. We Missed You!" I was very surprised! I didn't know he had it in him! Thank you dear!

Alec has been doing pretty well. The vomiting and suctioning come and go. I may have to take him back to the dentist because his top gums have been very red and swollen for a while, but no teeth are popping through. His two bottom teeth aren't really coming in very well either. I am going to ask Dr DeHaan about it on Monday because I have to take Aaron in. He has had what we thought was ringworm, but it must be a different type of fungus. We have tried 2 different creams and it does not go away. For a long time it was just on the side of his head and didn't really grow or change, but now he also has it growing on the side of his lips. Hopefully, this time we can figure something out to kill it.

We are still waiting for test results from Mayo. i have called up there a couple of times, trying to get the results from just the blood tests, but nobody calls me back. May 11 will be 8 weeks. I am going to call up again probably on the 16th of this month.

Can you guys believe that it is May already!?!?!

Wednesday, April 27, 2005 4:33 PM CDT

I just wrote the worlds longest journal and lost it! URRRR!

Last Thursday the circus was wonderful! Aaron really enjoyed it and Alec loved the beginning when all the lights were off and the spotlight was on the disco ball. He kept looking up at the ceiling to see the shiny spots and continued to do so after the spotlight was shut off!

Friday was our shopping adventure. I called into the rehab center first thing in the am because the footrest on the kid kart had to be adjusted due to the fact it was falling off! Of course, I was told that if I brought it in right away they could get it down. So... I woke up the boys and got everything loaded and whisked off to town. Since we were already there I decided that I would try to find some rugs for the camper and try to find some sweatpants for Aaron (but that is another story!). We stopped at K-Mart, Lewis, Shopko (and we can't forget Krispy Kreme!!) and I ended up going to Wal-Mart to buy the first rugs I had seen because I liked them the best and they were the cheapest. We also went to pick up groceries at Hyvee. I was pushing Alec in his kid kart and was pulling the shopping cart behind me with Aaron in it. (I have found this train technique is the easiest when we are shopping!) I had a women say "Your boys are so cute! Are they twins?" All in all, they boys were good. Aaron is always good when you bribe him with donuts! Friday night Turk and I went out with our neighbors Kyle and Amy to celebrate Amy's 2nd 29th birthday. It was a fun evening. We met up with some of Amy's other friends and had a great meal at the lonestar and then went to Shenanigan's and watched people sing karaoke. Thanks Grandma Kim for watching our babies!!!

Saturday we went over to Turk's cousin Scott's house for a poker party. Aaron loved playing with all of his cousins, but we had to suction Alec 4 times in the short while we were there. I gave him benedryl once we got home and that seemed to help with his mucus, but when he vomited I noticed the black pepperlike flecks that were in it (don't mean to gross anyone out, but moms like us need to inspect that gross stuff!) Sunday we had to suction a couple of times when Alec vomited and he was having more of the black flecks. I called in the Dr Neidich's office on Monday and we started him on the carafate again because the carafate seemed to take care of the problem last time it occured. Alec is still vomiting and he now has decided to have the most awful diarrhea known to man. His feeds were moved to 1/2 strength and then last night I started him on straight pedialyte. So far there has been no change in his diarrhea and we had to cancel pool therapy today because of it! Bummer! Dr Neidich thinks he has roto and it sure reicks (is that spelled right???) like it!

Alec went in to feeding clinic today and he looks great other than the rest of the gastro issues! He was just over 30 inches long and weight 23 lbs 10 ounzes. No wonder that women thought Alec and Aaron were twins. Of course, the fact that Aaron never stops running, talking, etc and that he eats like a bird probably contributes to his petiteness! We have decided to repeat a video swallow study in June to see if Alec can have liquids. If he passes that he will be able to start bottling with what is called a pigeon feeder.

Church was great on Sunday other than the fact that it always makes me cry! Sometimes I just think about all that Alec has been through and has to go through. It is not fair that he is going to not live a long life and going to die so soon. As much as you try to prepare yourself for it, you never can. And Alec is no tragedy and it will not be a tragedy when he passes. I know that it is going to be a celebration because he will be in heaven with Jesus. But that doesn't make things any easier knowing what our family is going to be going through. But, we are a very blessed family and love every day that we get together. How fortunate the things that Alec has been able to teach us. The Lord works in mysterious ways!!

As you can tell from the guestbook, I am getting ready to leave for a short vacation! My mom, my aunt Lisa, and I are going to Philedelphia to see my aunt Mary. We are planning on going to NY city for a couple of days and just doing nothing. We are leaving tomorrow and getting back on Tuesday. Please pray for safe travel, healthy children, and Brad because he will be alone with both boys. He says that he can handle it no problem, but please pray for him because it will make me feel better!

Anyway, my sweatpants story. In all of the places that I stopped on Friday I cannot find sweats to fit Aaron! I have even been to once upon a child with no luck! Thankfully, Holly (Turk's cousin) came through and found a pair for Aaron and Alec on clearance for $1.50 at another Kmart in Sioux Falls. Way to go Holly! I also have Kristin (Turk's Cousin) on the lookout for me this weekend while she is rummaging on the Kingswood Rummages. Missing that was the only bummer thing about my trip, but I know my requests will be handled well!

Thank you everyone for your prayers and support. HAVE A WONDERFUL DAY AND DO NOT LEAVE THIS SITE WITHOUT GIVING ALEC A HUG AND SAYING "HI" IN THE GUESTBOOK!!

Thursday, April 21, 2005 4:08 PM CDT

Hi everyone! Sorry again for the belated update. I plan on doing it every day, but somehow there is just never enough time!! I am going to try to be better!

Last Thursday Brad and I picked up our camper. We are so excited to take the boys out. Last night we got some things organized in there and Aaron & Alec loved being outside and out in the camper. Aaron is so loving with Alec. They were playing hide-a-seek from Brad and I with the bed comforter. Aaron thought it was fun, but everytime Aaron would put the blanket over Alec, Alec would start to move his head all over! It was so funny. I also got out of the shower this morning and found Aaron all curled up with Alec under the blankets in Alec's crib. So cute! I should have had the camera ready and got a pic!

Brad and I have been busy trying to get some spring cleaning done. We have gotton the garage all ready and Brad made some shelves, but we have a lot more work to go! I want to get out into my flower beds this weekend but I will have to wait and see if the rain is going to stop!

Alec has been doing well. On Monday, Patti (PT) saw that his AFOs were getting too small so we had him casted for new ones on Tuesday at the Rehab center since we were already there for therapy and for spasicity clinic. Dr Johnson thought that Alec looked good. No changes other than the AFOs. We got our prescription for more baclofen, his once a week OT, and his pool therepy through Sept until we go back again. Yesterday Alec really enjoyed his pool therapy. Lots of smiles and lots of kicking!

I called up to Mayo on Monday about some of Alec's blood work, but they have not called me back. I think I am going to call up there again tomorrow morning. Dr Renaud had told us that it would take a couple of weeks for the bloodwork. I know that they are waiting to send us anything until the biopsy results come back. I also talked to one of Dr Bunch's nurses this week about the Rett's test. From what Anita (nurse) could tell they test was 80 percent sure that Alec did not have Rett's.

Alec's home care has been going great. I purchased a special bottle called the Haberman Feeder and Gina (one of the home nurses) has been working on getting Alec to suck. I just talked to Gina and she told me today that when she put Alec's fist up to his mouth he was sucking on it! He also took a little bit from the bottle! So exciting!

Tonight we are off to the Circus. I know that Aaron will love it and it will be interesting to see if Alec enjoys it or not. I hope you all have a wonderful evening and weekend!

Love, The Idekers

PS If anyone is bored this weekend you can come help us clean! If you are really bored, you can come and put together the curio cabinet that I got for xmas in 2003!! HA-HA

Thursday, April 14, 2005 2:48 PM CDT

Good afternoon everyone!!

If you haven't noticed the new things I have added to the website you will have to check them out! I just added the new video and it turned out just cute. You will have to also stop by and give Alec a "hug" and add some to his counter! Don't forget to stop at the guestbook and sign it! Brad and I love to look at the new entries!!

You will also have to stop by and check out Haley's website "The Mighty Quinn". The link is at the bottom of Alec's page. She is on her Make-A-Wish (a disney cruise!!).

Brad and I went to Deadwood last weekend and it was very relaxing. We had a lot of fun (Brad had too much fun!!). We even won a little so that made the weekend that much more fun. It was nice to visit with friends we hadn't seen in a while. We got Alec a shirt with skunks on it that was too cute (He is all boy and does stink bad at times! haha) and we got Aaron a toy gun like the one Kevin Costner had in the movie Dances with Wolves. That movie is one of Aaron's favs. The boys stayed with my mom and dad and were wonderful from the report I got.

We did get a call on the way home on Sunday that Aaron was running a 103 temp. I took him in to Dr DeHaan on Monday and it is just viral. (Does anyone else ever get sick of hearing "its viral"? I am sick of viruses!!). I thought that Aaron was getting better and then on Tuesday morning early he was crying in his bed just shivering. He didn't have a temp and then after Brad and I finally got him warmed up he spiked a 103.5 temp. Poor kid. Poor mom and dad as we did not get much sleep that night! He seems to be better and Alec has not shown any symptoms which is good.

Alec's topamax seems to be working well, other than the nasty side effect of getting too warm and not being able to sweat. He has been doing good at "socializing" as one of his therapists said. He definatly knows what he wants when he wants. And he will tell you! He has been moving his mouth a lot lately like he is trying to talk. He has actually been vocalizing a lot more and making new sounds. It is very exciting. The mito cocktail may be doing some of this good also.

I did have the boys' pictures taken by Festive Studios in Hartford, SD and they did a great job. If you have time you will have to stop and check them out at www.festivestudios.com (sorry, I don't know how to put just the link up!)

Brad and I go tomorrow to pick up our camper from Spaders. I am getting excited to get it and get it ready to go!!! Spring fever!!!

We also the last couple of weeks have had some new nurses. Anne has decided to venture into other avenues. But, she still does pick up shifts for Interim when we need them covered. Anne is also going to be doing more respite. The new nurses that we have been having are Gina, Tracy, and Kelly. Alec seems to like them all so far.

If any of you our there know of any great bike trailers, like one to attach to your bicycle, let me know. I found a really awesome one that ends up being $754. That is a little too much for us! Any good ideas or options would be great. Just write in the guestbook or shoot me an email.

It has been nice not having so many drs appts lately. We are going to spasicity (sp) clinic next week. We are still waiting to hear on the biopsy. Probably at least another month, but we are halfway there!!! Yea!!!

Love you All!! The Idekers

Saturday, April 2, 2005 11:15 AM CST

Thanks again everyone for your prayers. If it was not for all of you we would have never gotton out of Sioux Valley as quick as we did. Alec has been doing better. Still coughing, choking, and vomiting some. I am so thankful that we do have the suction machine but there are days when I hate having to use it and hate having to bring it with us everywhere we go. Alec's cough is much better than it was and his vomiting spells I believe are related to the levocarn (one of the new vitamins).

Dr Lundien described Alec's airway as a wet noodle. He stated that a "normal" airway would be a hard noodle. With Alec's airway already being flimsy when he gets sick things become much worse. We have already been told that it is most likely that Alec would pass away from a respitory ailment than anything else. Anytime we go into the hospital for anything respitory, I kind of freak out, wondering if this is the time when Alec won't come home. Although, on Monday when I picked Aaron up he told me that Alec wasn't going to die and he was going to quit coughing and come home. Guess I should have the faith he does!

Alec is starting to have speech therapy now too. Jane is his ST and he did really well on Thursday. It is exiting to see him do so well at things when he wants to and when the seizures are kicking his butt. This week he was really working on moving his arms around.

Yesterday I took the boys to get their hair cut. You will all be shocked when you see Alec with his little buzz cut! I am going to post pictures as soon as I can. I have been having some problems getting them to size right and I haven't had the time lately to mess with it.

Thursday was also Alec's nurse, Anne, last day of being with us on a regular basis. We are sad to see her go, but she is going to fill in the openings that work out in Alec's schedule and do some more respite care for us. We just praise God for all she has done for us! We love you Anne!

Brad and I did decide to buy a camper (from Spaders in Sioux Falls. Wonderful place. If you are ever interested in one I would highly recommend it!). We are going to have our walk-through and pick it up on Apr 15. We decided that life is just too short and if Alec would pass away within this next year, we would have kick ourselves for not buying it and taking him out. We are getting very excited to go and get it and take it out!!

God Bless Everyone! You are all in our prayers!

Monday, March 28, 2005 6:03 PM CST

UPDATE Tuesday Morning!!
We are on our way home. I will update more later and let you all know more details.

If you missed the previous journal from earlier this morning, check out the journal history.

Just a quick update. Alec's oxygen levels have continued to decline over that last 24 hrs. Dr Lundien (pulm) came in and talked to Brad and informed him that we need to get Alec's advance directives written down, especially since we are choosing to not put a trach in for him. Dr Lundien told us that Alec's airway could swell closed at any time. Dr Lundien said that if he does make it through this sickness, more than likely every time Alec does get sick, this will get worse until he does pass.

We need prayers that Brad and I can continue to stay strong and understand when it is God's time to bring Alec home. Please praise God for all of the good we have had and for the lessons we are learning through this situation.

Please sign the guestbook, even if it is just "hi" so that we can know you stopped by.

Monday, March 28, 2005 8:54 AM CST

After a very long evening, we have been admitted up to the Peds floor at SVH. I brought Alec in around 9:30 or so because his breathing was becoming more labored (I guess I should start out by telling you that this was the beginnings of a cold!) and his coughing was becoming worse. Each day last week he became a little bit worse. Anyway, the dr in the ER said he had ear infection and also wanted Alec to be on a steroid for his breathing. The ER Dr told us to go home, but come back and see dr Dehaan or one of the Pulmonologists in the morning (it was now midnight). So.....we got home after sitting in the Walgreens parking lot for 45 minutes (the pharmacist said it would take 15) and then Brad ending up getting up 2-4 times to suction him because he was coughing so bad and choking on his mucus. I got up about 3:30 and gave him a neb treatment and then we had to suction him again so I brought him back to the ER. We finally got up to the peds floor around 6:15. I went in to work for a bit while he was sleeping (he is still sleeping!). I think I must be so tired that my body doesn't know it because right now I don't feel too bad! Maybe talk to me about 3 pm this afternoon haha!

Dr DeHaan came in this morning and Alec doesn't sound too bad (and he also doesn't have ear infection. I have since decided that the only way we are going to ER anymore is by ambulance, otherwise they don't do anything). He is going to call Dr Lundien in to listen to Alec. Hopefully we will just watch him over the next day or so and then we can go home. Please pray that Alec does not catch anything else up here since it is RSV and Rotovirus central.

WE brought Alec in to see Dr Bunch last Friday and we put him back on the Topomax. We also added co-enzyme q10, levocarn, and vi-daylin as his "mito" cocktail. So far, no change in his seizure activity.

But, I will update more soon and let you all know what is going. We love you all. Thanks for your prayers and support. Please sign the guestbook! :)

Friday, March 18, 2005 11:38 AM CST

Well, God has blessed us with another one of His Miracles! Thursday morning we went to the clinic to get Alec's echo done on his heart. I was nervous, but very glad to be there to have the testing done so soon instead of waiting around Sioux Falls. Alec was starving and screamed the entire time we were in the waiting room. When we finally got back, the nurse and doc decided that they didn't have to sedate him since he doesn't move much anyway. (Which means that he could have eaten!! Oh well, I would rather have done it that way then find out later we have to reschedule!). After the Echo we went to Wal-Mart and stocked up on some things since we were planning on being in Rochester for a while. At 1:45 Thurs afternoon, Dr Renaud called and said that Alec's heart was normal! Praise God!! Dr Driscoll, the cardiologist, had read the test and said everything looked good and we didn't have to stay for the cardiology appt that was scheduled for today.

After that Brad and I hi-tailed it around the Ronald McDonald House and started packing and cleaning our room (for those of you who don't know, you are required to deep clean your room for the next family before you check out.) We finally got out of Rochester around 3:30 pm. We thankfully made it to Larchwood to meet my parents for supper and pick up Aaron, so the only real bad snow drive was from Larchwood to Harrisburg. We are so happy to be home.

Dr Renaud did give us so different things to try for Alec such as Co Enzyme Q, zonagram, folitic acid supplements, and start him on a multi-vitamin. Dr Renaud did email Dr Bunch and I hope we can get Alec in to see Dr Bunch soon to start some of these changes. After a few months of feeling like we have nothing else to do, I finally feel like we may be making some progress. Even if Alec's seizures or ability never progress I don't care because we are trying and ruling more things out.

I can't wait to get some of these test results back, but at least we will know by Memorial Day or so. I am also secretly happy that it snowed too (Don't tell Brad because he has to go out and scoop of driveway when it is done snowing and blowing!). Our family is able to just snuggle into the house for the weekend and so far today we have been cleaning and organizing fools!

Thank you everyone for the prayers! We love you all and thank you all so much. Thanks for signing the guestbook too. Brad and I LOVE to look at it and see who all stops by and the messages, even if all you write is "Hi". So even if you don't know you personally, you are more than welcome to sign the guestbook. We love to know who all comes to look at our baby!

Wednesday, March 16, 2005 5:38 PM CST

Well, we are at the Ronald McDonald House. They called last night and had a room for us, but we turned it down expecting to leave first thing tomorrow morning. Unfortunatly, we will not be leaving as soon as we thought.

Yesterday we had our appt with Dr Renaud first thing. I really liked her and thought that she was very thorough. The appt took about 2 hours. She felt that Alec's heart rate with elevated so she scheduled an EKG(?) for 1pm yesterday. We then met with the surgeon at 2:15 to go over what today would all entail.

This morning early we went over to St Mary's Hospital (as I said in my previous journal) for the procedures. Brad and I were comfortable with everything. They were going to do a muscle and skin biopsy (both taken from the same site) and then while he was out they were going to draw the blood that Dr Renaud had ordered for testing and also do a MRI. I wasn't nervous at all. But then.......

About 1 hour after we left Alec, Dr Renaud office called and wanted us to have an echocardiogram (?) due to an abnormality on the EKG. Dr Renaud called me shortly after her office did and told me that it seems at though Alec's heart could be enlarged. She said that everything was still questionable since his heart rate was borderline, but she wanted us to complete the test just in case. The plan was to have the echo and then wait for her to call us to see if we should stay in town or not. On her notecard we need to bring to the echo they are evaluating vertricular systolic function because it indicates Alec may have cardiomyopathy - hypertrophic.

Ok. That put me over the edge. I was dying for Alec to get out of surgery. I am sure that everyone in the waiting room was sick of my pacing by the time we were actually called back. I talked with Dr Renauds office at 8:30 and we didnt' get to see Alec until 11:30. Talk about nerve-racking!! I am not sure how to digest all of this info yet. Later this afternoon, Dr Renaud's office called back again and told me that she had scheduled Alec a cardiology appt for Friday at 10:30. I am not sure how this will go.

I have been looking up lots of stuff on the internet and I truly think that Alec does have a mitochodrial disease. During Dr Renauds appt we talked alot about different things that were elevated in his blood that were cause for some concern and/or testing. I am getting extremely anxious for those results and it is going to take 4-6 weeks for everything to be back. We told Dr Renaud we were planning on 8 so I hope that it is shorter than that.

I just don't really have anything to say. I feel like I should be doing something but don't know what and I can't just relax. I feel so agitated right now. We know that Alec is going to have a short life span, but I always think that we have more time. What if we don't? And I can't even think about it. Please pray for us. Please pray for me to Let Go and Let God because I feel so unable to do that. Please pray for Aaron. Please pray for Alec.

Wednesday, March 16, 2005 6:19 AM CST

We are leaving our hotel shortly to go over to St Mary's Hospital to have a muscle biopsy, skin biopsy, and MRI completed. The Drs worked out the schedule yesterday so that Alec is the first one in today. He should be done with his procedures by 9-9:30, but I don't know how long he will be in recovery. Please say some prayers that everything goes smoothly for Alec. I will be updated more later about all of our appts yesterday.

Monday, March 14, 2005 6:43 AM CST

Good Morning everyone!

We are on our way to Mayo this morning. I couldn't sleep at all last night. My stomach is in knots. I must be more agitated about this visit than I thought I was. I called the Ronald McDonald House last night and there were 4 families on the waiting list. I am praying that we are able to get into the house within a day. Our appt with Dr Renaud is at 7:45 on Tuesday and we also meet with a surgeon at 2:15 on Tuesdays regarding the muscle biopsy. Alec also has an MRI scheduled for 7:30 Wednesday morning. I hope to not be up there long, but we won't know until probably Wed.

Alec has been doing fairly well. We were having issues with vomiting and black spore-like substances coming out of his g-tube, but that problem seems to be resolved. Now we are having to suction him because he coughs and chokes on his mucus. It is frustrating. I hate using the suction machine, but at least we are only using it orally and not naselly (sp? is that even a word?).

Alec's therapies have been going well and we are having an IFSP meeting for him on 3:30 March 21 to see if we can incorporate speech therapy in also since he is now eating orally. He is doing good with his "pleasure foods". Brad and I do know that he does not like bananas or peas because he gag several times when we tried those foods!

Alec did get his first tooth on March 1 (bottom right) and the bottom left soon followed. I took him and Aaron to the dentist on March 10 and both got great reports!

I will update in Rochester if we get into Ronald McDonald and have computer access. Take care and thank you all for the prayers!!

Thursday, February 17, 2005 11:34 AM CST

Good Morning All!!

Aaron and Alec had wonderful birthdays and wonderful birthday parties. They were both spoiled rotton of course.

On Saturday the 5th Alec and I went to the Mallwalk with Haley and Amy. Haley's grandma Eden and Alec's auntie Diane came along too. It was a lot of fun! I am excited to do it again next year.

Alec started his pool therapy on the 9th. He wasn't too sure about it the first session, but yesterday went great. He was very relaxed and had a fun time kicking around and floating.

Aaron has been doing well. He is recovering from ringworm (Do we ever get a break!!). We have been having some issues with a "potty" mouth, but ever since his dirty mouth was cleaned out with soap there have been no issues. He has been having lots of fun wrestling with Dad and I know that Dad is excited for spring to come so that they can break out Aaron's tee ball set he got for his birthday.

Last Saturday Aaron went over to Kira and Allie Loftesness's house and played and Kristin came over to our house and watched Alec. Brad and I were able to go to my brother Caleb's sectional wrestling tournement. After that Brad and I went out for supper at Main Street in Larchwood. It was awesome to have a day of rest and a peaceful meal. Thank you!!

Well, we have had another miracle that occur this week. Yesterday Brad and I took Alec in for a video swallow study to check on his aspiration. Guess what!?!?!? Alec can now have baby foods!!! No aspiration!! Is God good or what!!! I cannot WAIT to go out and buy some baby food for him to start trying out. He is going to be "pleasure eating". The drs and speech people don't think that he will be eating more than a tablespoon, but HE GETS TO EAT!!

I also took Alec in this morning to see Dr West, the opthmologist. No damage to his optical nerves so that was great news. Alec will be having to get glasses in the future, but that won't be until next year around this time maybe.

We will be making our journey to Rochester on March 14. Alec has his appt March 15 with Dr Renaud and we also meet with a surgeon that Tues to discuss the muscle biopsy. Alec also has an MRI scheduled for Wednesday morning. Could you all please pray that we get into the Ronald McDonald house? It is much more affordable and so handy being right in between the hospital and the clinic. They also have shuttles. Brad and I are starting to get anxious to go.

Thanks for your prayers and support. We love you all!

Tuesday, February 1, 2005 9:09 AM CST

Hey Everyone!!

Alec and I are participating in the CCHS Mallwalk on this Saturday. We are going to be walking for the aquatics team (Alec is going to be starting pool therapy this month!!) and all the money we receive in pledges will be going direct to that program. We are going to be walking with Haley and her family.

If anyone would be interesting in pledging please email me at starfish28119@yahoo.com with the amount. I do need the cash/check asap as I have to turn in my pledge money on Saturday morning before we begin walking!

Everything seems to be going fairly well. Alec woke up with pinkeye on Friday and both of my parents have influenza A so we have begun meds for the boys. Therapies have been going as good as the mood that Alec is in at the time. He is mostly irritable lately. We need to get something fixed with his meds. Aaron is great! We had a good birthday party on Sunday and we are having the Ideker birthday party on Saturday late afternoon.

Please keep us in continued prayer.

Monday, January 17, 2005 2:06 PM CST

I have added a couple more items to the lists.

Alec's appts last Monday went ok. Dr Bunch is increasing his felbetol since it was very low. We will have to wait and see how that goes. He has been having quite a bit of seizures, but he has also been running fevers. We took him in to see Dr DeHaan twice last week and once this morning. His white count is high, but we do not have to go to the hospital. Alec does not have anything like pneumonia or sorts. Dr Neidich has scheduled another video swallow study for Feb 16.

Dr Bunch is getting us into mayo again to go and see a neuro-geneticist. We should be going sometime in the next 6 weeks. I am excited to go and maybe try some different studies.

Alec is going to be 1 on Wednesday the 19th!!! What wonderful week!! Per the request of family members birthday lists are as follows:

Alec-
18 months (a little bit currently) clothes
24 month summer tops (I have all of Aaron's shorts from the last 2 years that will fit him)
Maybe a 24 month long sleeved pant outfit for outside this summer
Ankle & wrist bells (www.beyondplay.com)
Gymnic round therapy ball 55cm(www.beyondplay.com)
8oz evenflo bottles
4oz evenflo breastmilk storage bottles
a couple of koosh balls
microbead pillow
flavored lip gloss (for tasting)
24 month or 2t winter bunting (snowsuit for next year-I am mainly looking for one that has dual zippers down to the feet and the hands and feet are enclosed)
a hammock swing (Alec loves to swing in therapy!)
Almond Oil (for massage, can be bought at wayne & mary's)
Books - rhyming or rythmic, baby mozart, touch-n-feel

Aaron-
Chutes & Ladders
3t tops
2t bottoms
2t (or so) shorts (he has finally outgrown his 12 month shorts!!)
Some nice summer outfits and some outfits for next winter
3t coat
Sled
Nerf toys (bow & arrow, guns, etc)
Books - likes dora, dr seuss, blue's clues
Color Wonder marker books

I am planning their parties for the last weekend in January. We are planning sat lat afternoon for the Ideker side and Sunday early afternoon for the Blauwet side.

I will talk to you all soon. Thanks for all the prayers. Please be in prayer for my sister-in-law's father, Leroy Harden and his family. He has been diagnosed with cancer of the esophogus and went down to Omaha today to start treatments.

Saturday, January 8, 2005 9:04 PM CST

Hello Everyone!! It has been some time!

Alec did come down with another sinus infection at the beginning of December. He was put on another 3 weeks of antibiotics. WE have not had to suction him after he was on his antibiotics for a few days. It has been quite nice!

During December, Alec began to have his therapies M-F. He was and still is doing pretty well. Dr Johnson, cut out his Friday therapy. We see her again in February to see if it should be added back in. We had Alec's birth-to-three review in the middle of December. Patti (PT) and Monica (OT) -both home therapists- are now doing a joint session on Mondays. Monica also comes on Thursdays and Patti comes on Wednesdays. Anne takes Alec to the Rehab center on Tuesdays still. Alec has been doing better at getting some head control. Patti brought out a stander about 1 week ago. We strap Alec in and then a hydraulic lift stands him upright. He loves it. He has been using his hands to try to grab at things which is so awesome!!!

Alec got his new helmet and his AFO's. His helmet is a clear thin plastic which is working so much better for the heat issue and the heaviness of the helmet. Alec's AFOs are camoflauge and they are so teeny and so cute. The day that we got the AFOs I took him and Aaron out to get their new shoes.

Alec has also had to get his wheelchair adjusted because he has grown so much!!

Christmas was pretty wonderful at our house. We had some people through Laney Bear Care that "adopted" our family for xmas. The boys got a lot of very cute toys and clothes. Brad and I also got a couple of gift certificates to go out to eat sometime and supplies for the house such as hand sanitizer, garbage bags, sandwich bags, cleaning supplies, disinfectant wipes and many more things. Our families we also very good to us.

Last Tuesday night when we got that snowstorm, Brad and I ended up taking both boys into Acute Care (I hate going there) because we had a hunch what was wrong with both of them. Alec has ear infection and Aaron has sinus infection. We got our antibiotics and were off toward home again! We have been very fortunate that we have been able to have the good health we have with both boys so we have been staying out of the hospital.

On Monday morning we have an appt with Dr Bunch and Dr Neidich. The febatol has not really helped Alec out at all. We will probably ask to switch him back to the Topamax. That med, out of the past year, has been the one we feel to help the most with his seizures. At times, he is still having up to 100 seizures a day.

Anne is still coming into our home 40 hours a week to care for Alec. She has been so good for him, to him and to all of us. We are blessed to have her as part of our family.

Brad and I went and looked at new mini-van's right at the end of the year. We ended up purchasing a new van with a $2000 manufacturers rebate and 0 percent financing. It was a blessing that we were able to get this van and not pay much more money a month than we were already paying. We got a new chrysler town & country with the stow-and-go seating. We have so much more room. We are able to stow one of the middle seats so we can get Alec out in any emergency. There is an outlet near the sliding doors to plug in his suction machine if needed. Plus, we have plenty of room in the back to fold up his Kid-Kart.

BY THE WAY!!!! I ALMOST FORGOT TO TELL YOU ALL THAT DECEMBER WAS THE FIRST MONTH IN THE YEAR OF 2004 THAT WE WERE NOT IN THE HOSPITAL!!!! PRAISE GOD!!!!

We want to say a huge thank you to all that have helped us out this past year. Lord, without we would not have been able to make it!!

I especially want to thank all those who have given us financial support. Because of you, our boys had a wonderful xmas and will have great birthdays (shhhh! they are coming up 1/19 and 2/8!). Your deeds have been forever etched in our hearts and there are not words to say the thank you that we feel. We love you.

Sunday, December 5, 2004 4:53 PM CST

Everything has been going pretty well. Alec is starting to get sick again. I have had to suction him 4 times today. Please pray for us. I will update again when I do get a good chance to type everything in. Check out the new photos.

Please find below my testimony for Alec's church service on 11-14-04:

When preparing for the birth of our second child, I never imagined the going through all of the things we have and dealing with all of the feelings along with it. I don’t think anyone envisions raising and caring for a disabled child. My entire life I always had a feeling in the back of my mind that I was going to have a retarded child, and I was petrified. I always tried to suppress it by telling myself “that would never happen to me”. Being exposed to people that were “different” made me extremely uncomfortable. After I met Brad’s sister Pam (who has Down’s syndrome), some of my feelings did change and I did become more comfortable around her. But I had never been able to rid that “feeling” I had in the back of my mind. I told myself I was just being paranoid.

When Brad and I found out we were having a boy, we dreamed and planned of what any parent would. We couldn’t wait to see him grow; see the personality differences between him and Aaron. Won’t it be wonderful to see them wrestling together? It was going to be the best to give Aaron a playmate. It would be hard with 2 children, but it would get much easier as they both grew older.

Alec was born January 19, 2004 and was declared a healthy baby boy. Everything went as planned. The day that we took him home from the hospital, Alec began having some weird twitches, which we later found out were seizures. We videotaped Alec twitching, brought them in to Dr DeHaan and he scheduled an EEG just to check it out. This was just the beginning of our incredible journey.

When looking for a neurologist for Alec, we were told that Dr Bonnie Bunch was the one to see. I requested her twice, but was told she wasn’t taking any new patients. But God answered our prayers. On January 30th, Dr DeHaan’s office called and said that Alec had an abnormal newborn screen. Less then five minutes before the Drs office called, Don and Myra had stopped by. Dr DeHaan said that we could be admitted to the hospital to start trying to figure something out for Alec, so we packed up, prayed with Don & Myra and left. Dr Bunch was on call for the weekend and Alec became her patient. Praise God!

To make a long story short, Alec was diagnosed with seizures and they were under control with a med. On Feb 23, 2004 we brought Alec back to the hospital and he was diagnosed with another type of seizure, Infantile Spasms. This diagnosis was not good. He had started having seizures at a very young age and now developed another type. This EEG in February revealed that his brain waves were not developing as he was getting older. This was devastation for Brad and me. We were very adamant on finding out why he was having the seizures and what kind of disorder did Alec have. Most importantly, what was Alec’s prognosis? Nobody could tell us anything.

When Alec was four months old we were told that he would not walk, probably never talk, and would not survive to his teen years. Another kick in the stomach, but at this point we were beginning to be able to prepare for our future also. Alec continued to have other seizure types and has continued to deteriorate. At four months he had a g-tube placed in his stomach. Alec is only tube fed because he aspirates. Alec does not tolerate anything the way a “normal” baby would. Any sickness for Alec is an instant hospitalization. In Alec’s short life, we have been in the hospital every month since his birth due to various reasons.

There was a long period of anger and sadness from the beginning. It was very hard. Why did God do this to us? Was this some sort of punishment? For a long time, all Brad and I could do was constantly envision Alec’s funeral. Many people did not believe that anything could or would be wrong with Alec. Brad and I felt some people did not love Alec the way they loved Aaron. This also brought great sadness. Many people have also said, “We know that Alec has a purpose and someday we will find out what that is”. Well, you know what; everyone sitting in this room has a purpose. You need to ask yourselves what is God’s purpose for you? Remember, Romans 8:28 “We know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.”

No one can understand what we have gone through or are going through, unless you have been there yourself. We have prayed so much for a miracle, for God to make Alec “perfect”. Please Lord, if you could just heal him. We have had many prayers begging God to not let Alec die. And then prayers for God to take him home so that Alec doesn’t have to suffer anymore. We pray constantly for Alec.

This road God has chosen for is not easy, but he has blessed us in so many ways. Look at Aaron. God knew that a typical 2 year old could not handle a life like the past 10 months has been for us. God has made Aaron special. There has not been one mean thing spoken of Alec out of Aaron’s month. Not once, has there ever been jealousy. There has only been and extreme outpouring of love and protection. And Aaron has been able to comprehend everything. It is very hard for Brad and me to prioritize Aaron due to the extreme nature of Alec’s care. We feel guilty that Aaron and his needs get pushed to the wayside. We pray to God every night for him and also thank God every night for him. Aaron is one of God’s greatest miracles for Brad and me.

I also give glory to God for working on the hearts of the people that approved and deny for the SD disabled children’s program. Since Alec had no clear diagnosis for his problems, it was going to be hard for us to be approved. God knew we needed it and he provided. Alec is on the disabled children’s program making us eligible for Medicaid.

It is truly God’s handiwork that Alec is able to have his nurse Anne. Our private insurance pays for 160 hours a year of home health care from an RN. We used those hour in July after Alec’s g-tube surgery and applied for home health through Medicaid since our private insurance denied us. Unfortunatly, Medicaid denied us also. Tanya, with Laney Bear Care, re-filed Alec’s paperwork with the Medicaid office and Alec was approved for 40 hours a week home health from an LPN. Anne could not take the LPN position due to the pay. As time went along, it was very hard to find an LPN that could take care of Alec. Medicaid then approved 20 hours a week LPN care and 20 hours RN care. We asked Medicaid to approve a pay rate between the LPN wage and RN wage and then Anne could take the position. Ellen Brubeck with the Medicaid office then approved 40 hours a week RN care. Everyone that I have talked to said it was unheard of. God was and still is holding us in the palm of His hand.

God knew that when Brad and I were engaged, that we needed to build our house in Harrisburg. Just an off the wall decision for Brad and I as we had never really ever been to the town. But because we are in Harrisburg, Children’s Care occupational and physical therapist complete Alec’s therapy through the birth to three program.

God has blessed us with some of the most wonderful doctors. We pray everyday for their wisdom and they are all a part of our family. They have all helped in our decision of Alec’s wellbeing and they all support that we are making an unselfish decision of letting Alec go to heaven instead of prolonging his life with medical advances.

Brad and I have been told by people that they don’t know how we do it. If it wasn’t for God’s strength we couldn’t. If it wasn’t for you and everybody else that has helped us, we couldn’t. Your prayers and support help more than you know.

Our little Alec is an angel. How thankful we are that God gave him to us. What a gift we have. We would love to have Alec with us for many, many years, but what a celebration it will be when Alec goes home, running into Jesus’ arms.

Tuesday, November 23, 2004 7:30 PM CST

Well, alot has happened since I have last updated.

We got out of the hospital on Nov 10 and it has been wonderful ever since. We did however, think that our stay at home was going to be shortened come Friday. Alec had been having a lot of diarrhea and had a terrible rash on his bottom. Anne and I took him in to see Dr Day. He put Alec on a steriod cream for his diaper rash and then also wanted us to try Enfamil Lipil AR formula that has thickener in it. We gave it to Alec for his 6pm feeding and he had a terrible allergic reaction to it. He got 45 mls that we sucked back out of his stomach (good thing for the g tube!!). Alec began choking, gagging, and foaming at the mouth. We had to suction him and give him O2. We then noticed his torso was bright red and swollen. Alec then began having some spells again and we called 911. When the EMTs got to our house they gave him a steroid shot and some benadryl. We went to the hospital via ambulance, but we only ended up having to stay in the ER for a while. We gave him a steriod and benadryl for a few days and he was fine.

The next night, Nov 13, Aaron ended up throwing up all over his bed. His mattrass pad hadn't been washed to go on his new bunkbeds, so Brad and I just threw it out and moved the twin mattress down from the top bunk. We said many prayers that Alec wouldn't get sick and Aaron would recover quickly because we had a church service for Alec the next morning.

After a very short night of sleep, we all went to church and everyone was fine! Alec's church service went very well. It was videotaped and Doug Jiskoot is working on a DVD. I will let you all know on Alec's website when it is ready. Praise God for that wonderful day!!

On November 16, Alec started receiving therapy M-F and also getting a massage on Tues and Fri. Alec was very, very tight after being so sick for so long and not being able to get his therapy. So far things have been going wonderful. On Mon, Wed, Thurs, Alec has his OT Monica (M,Th) and PT Patti (W) come out to our house still. On Tuesdays and Fridays he goes to the CCHS Rehab center where he has his massage first and then PT afterward. Anne and I also give him his massages at home on the days he doesn't go the the rehab center. Alec's tightness has improved greatly. He is started to move a lot more and his head control in increasing. One of Alec's new favorite things to do is stand up against a therapy ball that CCHS brought out for him to borrow for a while.

On Nov 17th we saw Dr DeHaan for his 9 month check (1 month late due to the recent hospitalizations). Everything looks good. I asked about Alec getting teeth and Dr DeHaan thought he would be pushing about 1 before we saw anything. I am praying that all goes smoothly when that time comes and we can avoid sicknesses.

On the 17th, Alec was also recasted for a helmet and casted for AFOs (leg braces). Alec's head had gotton so bad because we were in the hospital and not able to go and get his helmet adjusted at the rehab center. Alec had also been running all those fevers too so it just wasn't possible to wear the helmet like he should have been. Alec also has a lump on the back of his head that if it grows any larger we are going to have to have a CT scan to see if it is some sort of bone cyst. If it is a cyst, we may have to have it removed surgically. Alec's helmet comes in Dec 3 and I am not sure about the AFOs. We ordered all camoflage!!

Nov 18th was my birthday. Brad left to go deer hunting that day and the boys and I went down to my mom and dads for the weekend. We had a lot of fun and it was very relaxing!!

Last night Brad got home and the boys were very happy to see him. They all read lots of books together and we all snuggle in the rocking chairs.

Today Alec had an appt with Dr Neidich and Dr Bunch. Dr Neidich put Alec on 22 calorie alimentum. I think that it should be a lower calorie content than that but Alec gets weighed in a couple of weeks to see where he is at. Currently Alec is gaining 21 grams per day and they want him around 10! He is just a tank (Brad says that is his new nickname! haha). He weighed 19#8oz today. He has gained just over 3 pounds in the last 2 weeks since we left the hospital. All this weight gain with diarrhea for a week also!

Dr Bunch thought Alec was looking very well also. We are going to be increasing his felbamate. We will eventually hopefully be able to get him off of the Keppra and clonazepam. Brad and I talked to Dr Bunch about the possibility of a mitochondrial disorder. It really doesn't matter to us if that is what he has because it will not change anything to how we will or have been treating his disorder. But if Brad and I are going to choose to have any more children it should be something that we should know before we make that choice. We have to bring Alec back in about a month to have his levels drawn for his meds and the Dr Bunch might know when Alec could have this muscle biopsy done to test for the disorder. It will be something that we need to go to Mayo Clinic to complete, but when we do go it should be a fairly short stay.

Again we want to thank all of you who have brought food:
Grandma Marlys, Deitrich & Lex Knobloch, Kent & Amy, Wanita Koedam. We thank Wes & Dawn Meyer for the gift card and Candy Land for Aaron (he absolutly loves it!). Thank you to Sandy Martin who offered to do a family portrait for us. Thanks Sue for taking care of Alec for me. Also thank you to those of you who have offered financial support and to everyone for the prayers and emotional support. People often ask how we do it all, but we wouldn't be able to if it wasn't for all of you and for the strength from the Lord. PS Thanks to anyone also if I have missed you!

EVERYONE HAVE A BLESSED THANKSGIVING!!

Friday, November 12, 2004 7:59 AM CST

We are out of the hospital..more update later tonight.

Tuesday, November 9, 2004 11:13 PM CST

Hi everyone. We may be coming home tomorrow. We will have to wait and see what happens in the am. We are not holding our breath, but it would be wonderful.

On Monday, people for Children's Miracle Network (CMN) came in and took pictures of Alec. They will be using them for ads, maybe in a music video, and probably for the telathon next June. So exciting. I can't wait to see them.

His spinal tap came back fine. Alec is still running fevers and today he even had a rash from his fever. Today was one of the worse days. Even after both tylenol and motrin, the fever wouldn't break. Finally, after about 1 1/2 hours of cold washrags, it started to drop down. We are still having to suction him and he still has choking episodes. Dr DeHaan thinks even if the sinus infection goes away, the suctioning will be a forever thing. RT came in today and taught me how to suction through his nose. Something that I have been dreading. I absolutely HATE suctioning, but I am sure over time we will become accustomed to it like everything else.

Alec has been having PT and OT in the hospital. His muscles are so tight. He is going to be seeing Dr Johnson soon and I pray we can get something figured out. I can't wait to start pool therapy with him because I think it will be so good for him.

Alec's head has really been flattening out. He is actually started to get an indentation on the back of his head. Brad called Don from the rehab center and he came up and worked on Alec's helmet since he hasn't had it on in over a month. We are going to have to take him in quite a bit to get it adjusted again. If we are not able to go home soon, Don will be coming up to the hospital to make the necessary adjustments.

Alec is back on 24 calorie Alimentum formula. We have also changed his feedings back through the g tube port and are doing bolus feeds again. We are currently in the process of upping his amount he recieves per bolus. He will have to be on a night drip for a while until he is up where he needs to be.

Aaron had his last night of swimming lessons on Monday night. He absolutely loved them and we are hopefully going to sign him up again for a spring session. Child life has been taking a lot of pictures of our family together and of Aaron & Alec together. Aaron painted a picture frame on Sunday to put a picture in. Aaron is very emotionally drained and also needs to be back on a regular schedule. He needs lots of prayers.

Tonight Brad, Aaron and I went down to the West Lyon football game. It was very exciting and very nice to get out of the hospital for a while.

Thank you to all who wrote in the guestbook and for all of your prayers and support. Brad and I absolutely love getting guestbook entries. It is one of the highlights of our day looking at Alec's guestbook!

Thank you to:

Carrie Van Egdom - for the wonderful bars (Brad says they are his favorite!) and hotdish. It will be nice to have a hot meal not from Sioux Valley Cafeteria!

Anne - for staying overnight with Alec tonight so we could get some time out and for all of the prayers and support. You are an answered prayer from God.

Grandma Marlys - for sitting with Alec on Monday so that I could get to work

Jody & Tracy - for bringing us up supper on Sunday night. It was delicious!

And to everyone else for everything I am forgetting. You are all blessing to us and to our family. Although some of us may have never met, you are all in our hearts.

Saturday, November 6, 2004 10:08 PM CST

Not too much else is new lately. Alec has still be running fevers off and on, but nobody can seem to figure out why. His white count indicates an infection, but of unknown origin. The chest xray on Thurs (or Wed...can't remember which day) was fine, his urine was fine also. Dr Lundien did another chest xray today, which I am sure is fine too. Dr DeHaan thought that we would possibly go home today if Alec did ok yesterday with no fevers. Unfortunatly, Alec spiked a temp and they had to do a spinal tap. It will be 48 hours until results get back. Hopefully tomorrow we will here something, but it may be Monday. We are still having to suction Alec as needed when he has his choking episodes. His seizures on the whole seem to be getting a bit better. Maybe the felbamate will be our "wonder drug".

Our meeting on Friday went well. It was good to discuss our wishes. Brad and I need to get things written down this weekend yet so that our social workers can help us on Monday. We have decided to not revive should anything happen with his cardiovascular system. We will immediatly with respitory, but we will never continue to have him on something longterm. Should Alec need the use of a ventilator to get him over a pneumonia or such, we will use it, but we will never trach him. It was be very hard when the time comes, but it will be much better having these things decided before the time comes. As we told everyone in our meeting, it is not a matter of if, it is a matter of when. We just pray God will let him be with us for a while yet.

I want to put in my thank yous now:

To Lisa-for staying over night on Thurs so we could stay at home as a family. (Alec slept that night from 8:50pm until 7:30am!!)

To Rhonda - for staying Friday night so Brad, Aaron and I could go to the bull riding championships

To Grandpa Donnie & Grandma Patty - for supper Friday night and for coming with us to bull riding. Also to Patty for staying all day today so Brad and I could clean out our garage and organize our house.

To Joel & Marilyn - for the card and for the food.

To Grandpa Tom - For sitting with Alec tonight so I could organize the boys' bedrooms at home. (It was so cute - Mom and I got back up to the hospital and Grandpa and Alec were in the chair sleeping together!)

To My Mom - For the wonderful lunch yesterday and for helping me this evening getting things put together at home.

Could everyone please pray that God will heal Alec of his fevers and of his sinus infection. Please pray for Aaron, as all of this is hard on him too.

PS. Brad and I love everyone's guestbooks entries. Even if we don't know you, please feel free to write. Just the fact that you look at our website is supportive to us.

Wednesday, November 3, 2004 8:47 AM CST

Dr Bunch made it in late Monday evening. We have decided to take Alec off of the ketogenic diet and put him back on the alimentum. We have also decided to take him off of the keppra and we will be off of the dilantin once we get out of the hospital (if we ever do). We are going to be starting felbamate. It is Alec's last drug left that we haven't tried. We had to sign a consent for to administer it because it can cause acute liver failure and aplastic anemia. These side effects usually only occur in adults and teens and the youngest person that it has occured to has been 12. If Alec would happen to have these side effects, he would probably not be consider for a liver or bone marrow transplant. Hopefully, we will be able to see some improvement on this drug. Dr Bunch also mention the possibility of a mitachondrial disorder. We did have bloodwork and nuerotransmitters tested when we went to Mayo, but we may be going back for a muscle biopsy sometime when Dr Bunch feels we need to.

Alec has been running fevers ever since last Wednesday. Last night he had a 102.5 fever, which is his highest ever. The Drs are puzzled. He is on antibiotics still for his sinus infection and also on flagel for c-dif. Alec had a sinus xray done yesterday, which showed improvement. He is still having gagging spells. He had one on Thursday 28th but then didn't have any more until Monday night he had four. He has had one Tuesday morning and a couple last night. On Monday night RT (respitory therapy) came and did a deep suction of his airway and got some thick stuff out and that seemed to help. Last night the nurse did suction, but not much came out with the last one.

This morning Dr Wallace came in and is going to do a chest xray just to make sure that we are not missing anything there. Dr DeHaan is going to catheter him for urine to make sure there is nothing going on there because the antibiotics he is on may not cover the bladder. Dr DeHaan also ordered some bloodwork to make sure that nothing viral may be occuring. I just got done talking to the social workers and they are going to be setting up a meeting with several people to discuss our advance directives for Alec. This will help to get everything down in writing and make sure everyone up here at Sioux Valley understands what our wishes are.

Brad and I were able to go home last night with Aaron and stay because Kristin stayed up at the hospital with Alec. It was so nice to be home, especially in a clean home thanks to Darcy, Holly, Lynn, Heather, Kim and Monie for planning it all!! We are so blessed with such wonderful friends and family. Aaron slept in his bunkbeds downstairs for the first time. I shut off the lights and Brad was by Aaron's bed. As soon as I shut off the lights Aaron says to Brad..."daddy, get out".

Update later...xray is here.

Sunday, October 31, 2004 10:53 PM CST

Thank you everyone again. For all who sat with Alec last week and this past weekend and for all who help with our house. We can't say enough thanks yous for our family and friends.

Today was a good day for Aaron. We got to go trick-or-treating at all of his grandma's house's and also at the hospital. Everyone thought he was too cute in his monkey costume. And Aaron had a surprise from Anne when we got back to the hospital this evening....she got him some minature monkey animals to play with! Anne also brought Alec this toy shaped like a flower that lights up and plays music. We have it hanging from his toy rope in his crib and he loves to listen to it.

We found out today that Alec has c-dif (sp??) from being on antibiotics too long. What c-dif is is a bad bacteria that is infected his body because the antibiotics have been killing the good bacteria. Alec has also been losing a lot of weight. Not sure what is going on there, but just another issue to get resolved. I need to talk to Dr Neidich and Rachael (dietician) about this all. I am also anxious to talk to Dr Bunch tomorrow about this seizure bit.

Please pray from my friend Shannon.

Thursday, October 28, 2004 10:27 PM CDT

I have to say a big thank you to everyone who has helped us out this past little bit. Thank you to Aunt Diane for sitting with Alec last night so that Brad, Aaron, and I could be home for a good homecooked meal courtesy of Rhonda. It was nice to sit down and eat a "real" meal. Thanks also to Darcy who came over last night and cleaned our foyer and also wiped down ALL of the trim and walls in the basement. Thank you Lisa for sitting with Alec today so that both Brad and I could work. Thanks to Amy (our next door neighbor) who came over today and surprised us with the carpet in the basement being all vacuumed! Another super big thanks to Uncle Mike (Ideker) who volunteered to sit with Alec tonight and is staying overnight at the hospital for us. One more to add as an advanced thank you...to Darrin who is coming to sit with Alec tomorrow so that I may work, go to lunch with my friend Tanya - and thank you to Tanya also because we are organizing all of Alec's medical paperwork since birth tomorrow afternoon. We love you all and without all of you and your help Brad and I would both be insane! We don't have enough thank yous or words to express our feelings for the sacrifices you all make for us. You have no idea how much you truly help our marriage and our boys. There is no way we could ever express the gratitude we feel in our hearts. THANK YOU!!!!!

For this weekend I believe that my mother is coming to sit with Alec on Saturday evening (Sue, if you wanted to call my mom and find out what her plan is). It looks like Diane is going to sit Sunday evening sometime?? I am not sure what time.

It looks like we will most likely be in next week also so Brad and I are going to be putting together a schedule for next week. Some people from Rhonda's church are available whenever we need so Brad and I need to work on that soon.

I will update more tomorrow after I talk to Dr DeHaan about what the plan is for now. As far as I know, Dr Bunch is back in town on Monday.

Thursday, October 28, 2004 10:39 AM CDT

Not too much news to report. We are just waiting to see if the sinus infection is clearing up. Alec's seizures have been terrible. Dr DeHaan started him on dilantin today I believe. We are able to give him adivan prn (as needed).

I am looking for people that would like to sit with Alec on Saturday for a little while from 5pm on so Brad and I can go to Paul and Lynn's party. I am also looking for people that would be interested in sitting with Alec on Sunday for most of the day. If you can sit with him for a couple hour shift that would be fine. I would like to take Aaron down to Larchwood to trick-or-treat and then out to Hartford/Humboldt for the late afternoon and evening.

If anyone can, please write me a note in the guestbook so I can put something together and I will give you a call. Thanks for everything.

Tuesday, October 26, 2004 10:59 PM CDT

Yesterday evening we found out that Alec's sinus infection is worse than it was on Wed. Oct 20 from the MRI. We have changed his antibiotics from cefzil to augmentin. He had his sleep study last night. He had no choking spells, but after they disconnected him this morning he had three. The sleep study showed that he didn't need oxygen, which is good. He has not been on o2 all day and has been doing fine. He did have a couple of episodes throughout the day, but his sats never decreased by any significant amount.

This afternoon Grandma Edna came up to the hospital and rocked Alec for 1 1/2 hours. He had been fussy all last night and most all of the day today. But Grandma Edna cuddled him, sang to him, and did get him to sleep. So mom did get to take a little bit of a nap too! Big thank you to Great Grandma! Grandma Edna also brought up a halloween shirt and halloween bear for Alec. She also bought him a Christmas shirt! The season will be soon upon us.

Kristin sat up at the hospital tonight with Alec so that Brad, Aaron and I could be at home for a while together. Aaron got to watch Barney snuggling with mom and dad and we also read some books. Aaron and Dad we all tucked in on the couch when I left and then moved to the bed shortly thereafter. It was good to get some one-on-one time with Aaron.

Alec's seizures have been kicking his butt today. As I said before, he was fussy and whiny all day today. He was also very overtired. Every time he would start to fall asleep he would have a seizure that would wake him up and then he would cry. Dr Bunch is out of town and Dr Sanchez does not want to do anything different. I hope tomorrow that one of the doctors can add Dilantin back into his meds for a while to stop the seizures so Alec can sleep.

Dr Carver said today that the sleep study did not show that Alec needed a trach, but it also didn't show that he did not need it. Brad and I are not going have Alec get a trach. We do not feel that he needs it at this point and time, and we don't feel that if it is to the point he does need it that we will do it. We think these choking/gagging episodes are due to the sinus infection.

So for now we are just waiting to see if the augmentin works at all or if we are going to have to do IV antibiotics. I am not sure when Dr DeHaan wants to do another xray of Alec's sinuses to check it.

We love you all and thank you for your continued support and prayer.

Monday, October 25, 2004 8:56 AM CDT

Hi Everyone. We are back at Sioux Valley...Our favorite place to be! Alec had three of his choking episodes yesterday. The worst one was in church. I was almost to the point of yelling out into the congregation to get someone to help us. After Brad's grandma's birthday party where he had another one, we brought him to the ER.

Last night they did an xray of his sinuses and a water study on his sinuses. Dr Carver told us to keep a tracheotomy in the back of our minds. Brad and I are very apprehensive about this and how far we would/should go to keep Alec alive.

I hope that something gets figured out soon. Alec has also lost almost 2 lbs in the last 16 days. Please pray for all of his doctors that they should have wisdom.

Friday, October 22, 2004 11:27 PM CDT

We are home! We were discharge late this afternoon and let me tell you it is good to be home! Hopefully we can stay here for a while!

Alec's MRI showed some fluid on the brain, but that is unchanged from the MRI from when he was younger. His MRI also showed a sinus infection. So Dr DeHaan put him on antibiotics for that. Dr Neidich believes that Alec's sinus infection is the cause of his choking episodes.

The G-tube was changed to a gj tube on Wednesday and so far we have not had any problems with it. We have an appointment next week with Dr Neidich and we will see if we will change out the tube back to a g tube. I suspect that we will change it back once the current gj tube needs to be replaced.

We are still on O2 24hrs/day. Kind of a drag, but we hopefully will not have to be on it once winter is over. Alec had a pneumogram last night while in the hospital which I believe came back ok. He did have a couple periods where his oxygen level desatured and he did have one choking spell. We also have an appt with Dr Carver in 1 month.

Today Aaron, Brad, and I went to Dr DeHaan's office for our flu shots and an appt for Aaron. We found out that Aaron does have asthma. He was put on singular so we will see how that helps. Alec has an appt next week with Dr DeHaan for his 9 month check and to get his flu shot.

Anne will be starting back again on Monday and we are excited for that.

Hope you all have a wonderful weekend!!

Tuesday, October 19, 2004 8:17 AM CDT

UPDATE WEDNESDAY, OCTOBER 20, 2004

Good morning all. We thought that we were going to be staying at home, but Alec had other plans. We were discharged Sunday and got home late afternoon. Sunday night Alec had a choking/gagging spell similar to the ones he was having back in July and August before we started the Prevacid. I just thought that it was due to the nasonex I had given him, because if I had to have nasel spray, I would cough and gag too!

Yesterday was our first day of home health care. We are so excited to have Anne back with us! Dr Lundien had wanted us to get in and see Dr Carver as soon as we could so I called right away Monday morning to set up and appt at the Children's Clinic. Amazingly, he had a 1:30 opening Monday. Apparently God knew that we needed to come back for some reason because I have never gotton into a specialist that quick. While Alec was at home with Anne yesterday morning he had a couple of episodes with her.

SO ANYWAY.....We are still in the hospital. We went down and did a chest xray yesterday which I am sure was fine and we just got back up to our room from Alec's MRI. I am very frustrated. Alec was supposed to have his MRI yesterday and then from the MRI go to xray to have his g-tube changed to a gj-tube. So apparently there is no radiologist that could have changed Alec's tube out today. I talked to our case manager, Val, and we are now going to be doing this around 5pm.

The g-tube is what goes into his stomach. The drs want to change it to a gj-tube (that goes into the stomach and then into the intestine) to alleviate these choking episodes. Dr Neidich told me that they would know in a couple of days after the gj-tube was placed if it would work or not. I am guess that we will not be out until late this weekend or early next week. If they would have done his MRI and gj-tube yesterday I would have guessed we would have been out by Friday.

Since we left the hospital on Sunday late afternoon until the time we were admitted, all of the long term rooms are full. We are now stuck in the little box and I feel like I am going to explode.

Well enough of my ranting and raving. Be sure to wish Brad a happy 29th b-day today.

Saturday, October 16, 2004 10:59 AM CDT

I just talked to Dr Lundien (pulmonologist) and we are most likely going home tomorrow no matter what. If Alec can go tonight without the O2 we will be leaving without it; if he drops his sats tonight we will be going home with O2. So that was good news.

Over the past couple of days we were in isolation because the drs tested for RSV and whooping cough. Both of those came back negative and so did his tests for a viral infection. So now we are out of isolation.

RT is still doing the 4 hour neb treatments. Alec does have ketones in his urine now also so the seizures are decreasing.

Not too much else to report other than we are really ready to get out of here! Aaron wants us all to be at home.

Brad has been working all week on finishing our basement. We have a little bit of work left in the bathroom and today Thorton is out at our house laying tackboard and padding. The carpet will be going in during the next week. We are so ready to get our pigsty organized and our garage cleaned out!

Zach (Shannon's little one) is still in Sioux Falls. The past couple of days for him have been better. Thanks for your prayers.

We love you all!!

Tuesday, October 12, 2004 11:27 PM CDT

Well, we thought that we might be going home today, but Alec decided he wanted to stay for a while longer! All day yesterday Alec went without O2, but then last night about 1:30 his sats started to drop and we had to put him back on oxygen. We started out at 1/4 liter, went up to 1/2 and then up to 1 liter. We stayed at 1 liter for most of the day and he is actually now at 1/4 liter. He was really wheezy lately.

Respitory Therapy has been doing neb treatments on him every 4 hours.

Alec's body is not is ketosis anymore, meaning his body is not burning fats for energy anymore. The antibiotics have starch in it causing him to have too many carbs. Alec has been totally seizing out like crazy. Just today he had around 100-125 seizures. Dr Bunch ordered an EEG and Alec seized during it so that was good. She is going to be reading the EEG tomorrow morning and then we are going to be putting together some sort of game plan for Alec. I am not sure whether she will add some meds IV and have us stay here until Alec is through with the antibiotics to get over his brochitis or if she will send us home on different meds until his body achieves ketosis again.

One thing I do know is that Dr DeHaan and Dr Wallace (pulmonologist) are not going to be sending Alec home on O2 because they don't feel that he needs it long term. So I do believe we could be here for a little bit longer than planned.

Thanks to everyone for the new journals. It is because of you that I am able to stay so upbeat and remain focused on all of the good God does for us.

Please keep my friend Shannon's little boy Zach in your prayers. He is in Peds ICU with an infection of the brain and other problems. His doctors are looking at flying him to a Children's hospital possibly in the next couple of days.

Love you all! Stephanie

Monday, October 11, 2004 7:30 AM CDT

We are back at the hospital. The last few days have been quite eventful.

On Wednesday I took Alec to the orthotist because his helmet is causing him to get bald spots. Of course, the orthotist has never seen anything like this! So I don't know what is up with that. While we were there I noticed Alec having new seizures that were lasting a few minutes.

On Thursday the boys and I went over to my friend Jaime's house. While we were there Aaron fell off of a chair, hit his chin on the counter and bit through his tongue. We ended up taking him to ER for that and he is supposed to be on a soft food diet for 1 week.

On Friday, I took Alec in to see Dr Day for a cough and congestion. Dr Day said he was getting the start of bronchitis. Friday night at 9pm our feeding pump broke down and we had to wait to give his 9pm feeding until Sioux Valley home medical brought us a replacement. They did not arrive until 10:30 and of course cannot explain why we have had 5 pumps now and they keep messing up! In between waiting for SV Home Medical, Alec started to seize out and we had to give him diastat to stop the seizures. They are supposed to stop in 15 minutes, but lasted about an hour. I was just going to administer the 2nd dose of diastat and then Alec stopped. I sat up with him until 12:30.

When we went to bed I brought him with me because I was afraid he was going to stop breathing because he was breathing pretty hard. At 2 am he had a bad seizure and woke me up. He was breathing terrible! I woke Brad up and we hurried him into ER because he was so close to going into respitory arrest. Thank God, that my friend Shannon was staying at our house so that we didn't have to wake up Aaron. (Shannon was staying becuase her little boy is in the Peds ICU and she couldn't stay at the hospital because all the rooms were full!)

In the ER, they put Alec on some oxygen and also gave him some seizure meds. We were down in the ER until 6:30 am. We got moved up to A wing (which is the very last wing they open for patients, usually where the PICU parents can stay.) I did sleep then for about 4 hours after everything was kind of settled. Then, we got moved to C wing and they closed A Wing and now Shannon has a room back!

Things were looking pretty good for us getting out today, but yesterday stuff starting moving to his right lung and last night was a terrible night. Alec kept desating (not having enough oxygen). We had to raise the O2 level he was getting and up the amount of time it was between respitory treatments. He did not go to bed until after 1am (little stinker! I think he wanted to be up watching a movie with Shannon and I because as soon as it was over he went to sleep) and is not breathing well. I am not sure what is going to be happening today. I am waiting for his doctors to come through.

Dr Bunch is also going to increase his diet from 3.5:1 up to 4:1 today.

Please pray for us all that we can make it over this bump it the road.

Monday, October 4, 2004 3:37 PM CDT

Hi Everyone!!

Wonderful news to report - I talked to Interim Healthcare and Ellen Brubek approved Alec for full time RN! It is truly a miricle of God and above and beyond our prayer requests. I was hoping that we could get a pay rate in between the part time LPN and part time RN that was already approved so that Anne could take his position. God delivered more. Praise the Lord! Anne will be Alec's full time nurse. We need to pray that the little boy she is currently taking care of can find a replacement just as good as Anne for him very soon so that Anne can begin her work in our home.

We did get out of the hospital late Sunday evening Sept 26. We went home with Alec off of the Lamictal and on Baclofen, which is a muscle relaxant. He has been quite sleepy overall, but when he has been awake he has been very calm and comfortable. We did start him on a new seizure med called Keppra about the middle of last week. We are in the process of increasing the amount.

Alec did have a couple of appts last week. We saw Dr Johnson last Wed regarding AFOs (leg braces). He is going to get casted at the end of this month. Alec also saw Don, his orthotist, about his helmet. Alec is constantly fighting red marks. I feel like we are taking him in all the time. But it is making a difference in the flatness of his head.

This past weekend Alec, Aaron, and I spent it down at my parents farm due to Brad painting our basement. We are getting very anxious to have it finished for the extra room. Although it will not help with Alec and his wheelchair, at least he is little enough yet that it is not a huge problem. Aaron is excited to have his new room.

As usual, we have all been very busy and I will try to write as often as I can. We love you all!

Saturday, September 25, 2004 9:31 AM CDT

Hello everyone-We are back in the hospital again.

About 1 1/2 weeks ago Alec started to become very fussy and we didn't know why. We have been in contact with Dr Bunch ever since. We tried to adjust some of his medication at home, gave him a few suppositories over time, started a new type of amino acid powder for his formula and took him off of the RCF, and tried everything that we could possibly think of to settle him down. He basically cried the entire time while he was awake. When I picked him up at Rhonda's (daycare) on Thursday I could not take it any longer. Brad called Dr Bunch and we brought him into ER and she admitted him to the hospital.

Alec cried Thursday from 1:30 in the afternoon until 1:00am until Dr Bunch gave him adivan (sp??) to conk him out for the night. We had an ultrasound to look at his internal organs and that came back fine and we also had a dye study (stuff put in his g-tube) to show if there were any internal hernias. That also came back fine. Dr Bunch also had Alec stop taking his Lamictal (seizure med) to see if that was the problem. Right now we are in the process of waiting to see if that has any affect on his crabbiness. Alec also had to have a heplock put in in case that dropping him completely off of the Lamical would cause him to seize out and we would have to administer a med by IV. So far I have not seen a huge change in seizures since the Lamictal was stopped by he has also been sleeping pretty much ever since. Alec has had some hard seizures while he has been awake and when he is up he is stiff as a board and usually crying.

Dr Bunch mentioned the possibility of a CT scan to look for fluid on the brain and maybe a bone scan to look for inflammation. Even though Alec is not showing any symptoms he has never been the typical child.

I will update as we go along and have time. Thank you all for your prayers. I love seeing the guestbook entries and knowing how much you all care. It definately gives us support that you don't even know.

Friday, September 10, 2004 11:48 PM CDT

Turk and I attempted to change Alec's mickey last night before his 10pm feeding. Bad idea. We tried to pull it out and it pulled so hard. We didn't want rip his stomach muscles, so we just refilled the balloon and left it. I had to go into the Children's clinic today and have labs drawn for his diet so I talk to Kirsten and Pam (nurses). They both said that it was pulling much harder than it should have too. Alec was just screaming while they were working on getting it out (of course he had had his labs drawn right before). Pam and Kirsten didn't get it out and then paged Dr Neidich. I was just thinking "Great, we have been in drs office's all day already!" We were "doctoring" from 8:30-1:15 after this was all said and done. Anyway, Alec did settle down and then I was holding him upright. Pam and Kirsten did get it to pop out. When the mickey came out Kirsten was saying "oh crap, oh crap" because the new mickey wasn't loobed up and ready! It was quite comical. We are going to be changing his mickey again at the clinic Nov 19 at our next appt, if nothing happens between now and then!

We did get Alec's kid kart wheelchair today. It is wonderful! I had to take him into CCHS for helmet adjustment, as as it turns out it was in. When Carrie (orthotist) looked at Alec's mark on his head she said it was from swollen lymph nodes. So after CCHS we went to Dr DeHaans office. While in there I noticed Aaron had a fever! So Dr DeHaan put Alec on antiboitics due to a scalp infection causing his lymph nodes to be swollen and Aaron had a strep culture done that came back negative. He ran a fever all afternoon and into the evening. Alec doesn't have to wear his helmet all weekend.

Turk and I are leaving for Minneapolis tomorrow morning to go to the Cowboys Vikings game. I hope that Aaron feels better soon. In fact, I hope our whole household it better soon!!

Grandma Kim and Grandpa Tom are watching the boys this weekend. On Sunday, church is having a carnival. Anne is going to be coming over to watch Alec. I know that he will love it!!

Wednesday, September 8, 2004 8:53 AM CDT

Today Brad took Alec to see Don (orthotist) about his helmet. I actually took him in yesterday to see a different orthotist at CCHS because on Sunday morning when Alec woke up we took his helmet off and the sides of his head were swollen. Carrie, the orthotist that he saw yesterday, said that his head must have been trying to grow and since there was that pressure at those points his head actually filled in a bit in the back! We are making some progress which is good!

We have been struggling with granulation tissue around Alec's Mickey clip for the past three weeks or so. We are on our second application and if it doesn't clear up this time, we may have to do a third application of cream or get it burned off with silver nitrate. I have to take Alec into the Children's Clinic to get blood drawn of Friday for Dr Bunch, and I am going to have Pam, Dr Bailey's nurse, check it out.

We are working on getting Alec's home nurse. We are going to be meeting with someone this week and someone next week. We are constantly praying for his nurse. Thanks for all of your prayers.

Wednesday, September 1, 2004 9:28 PM CDT

Hi All!

Alot has happened since I last updated. Our home computer has been having constant problems.

Alec is still having episodes where he tries to vomit and chokes. He also has a rash. I took him in to see Dr DeHaan on Monday and Wednesday. On Monday Dr DeHaan started him on some Prevacid to hopefully help the vomit/choking episodes. We have only had one episode since then which was this evening. This time though he was coughing and then just having a hard time trying to breathe. We hooked him up to vent him through the MicKey clip with what is called a bolus extension. It did not take long and he was back to normal.

I have been sick the past couple of days with a bad cold/sinus/allergies. I believe that Alec has what I have. He has a rash all over (part of the reason we saw Dr DeHaan twice this week) and all day yesterday both him and I were running low grade temps. I hope that he can snap out of this soon.

On Monday Alec got his helmet. It is cute camoflage! I will post some pictures as soon as I can. I did have to take Alec in today and get his helmet readjusted. It was causing too much pressure on a couple spots on his forehead. He had to wear it 1 hr Monday, 2 hrs Tuesday, 4 hrs today, 8 tomorrow, and then 23 hrs/day from then on. He is able to take it off for therapy and his one hour a day that he doesn't have to have it on, it will be bath and snuggle time.

Today we also had an appt with Dr Bunch and to see Rachael. They have move his ketogenic diet ratio from 3:1 up to 3.5:1. Hopefully this will help with the seizures better than it has. Lately he has been having clusters of seizures usually once in the morning and once in the evening. Last night he had 17 in 40 minutes and this morning he had 12 in able 20 minutes or so. Alec has been staying at his weight around 8.3 kilos (18# 5oz or so) but has been getting longer.

I talk to Mike at the CCHS rehab center and Alec's bath chair should be in by the end of this week and his Kid Kart should be here in a couple of weeks. I am excited to get his new things so he can have better support.

Today I also had to get Alec's feeding machine changed out again! The people at home medical equipment have got to be wondering by now. The first one had priming problems and we got that changed at the end of July. The second one was working fine and then all of the sudden one day we didn't have a screen. The last one I noticed this morning wasn't charging! Hopefully 3rd time is a charm!

As you can see we had a very busy day seeing 3 drs, going to home medical, and also having PT this morning! Patti, Alec's therapist loved his new boppy pillow that Aunt Diane made. Alec was able to lay better on his stomach and have more room for his legs.

This weekend Brad and I are going to our friends' wedding (Jaime and Casey) in Park Rapids, MN. Grandma Kim and Grandpa Tom will be watching the boys. Please say some prayers that all goes well with Alec while we are gone. We will be back on Saturday evening. I am glad that we are able to get away and take a bit of a break, but I am also nervous being so far away. I have been saying lots of prayers that my boys are great while we are away.

Take care everyone. Thanks for your prayers and support.

Tuesday, August 24, 2004 8:42 AM CDT

Yesterday was a long morning waiting in the drs offices. Dr Neidich came in and looked at Alec and didn't say much and Dr Carver came in also and didn't say too much. Just routine visits that we have to go to. We don't go see them again for 3 months and 6 months respectively.

While we were in the clinic we also had blood drawn and met with Rachael (dietician) about his diet. Not any changes yet, but maybe today after I hear about his bloodwork results.

So far with the ketogenic diet we have seen improvement, but not huge. Alec is having probably 20-30 "big" seizures a day plus some "littler" ones. Last night was by far one of the worst that he has had in a long time. He just sobbed and sobbed afterwards. It was very hard to see and breaks my heart when he does that. He hasn't had any episodes like that after seizures for a long time and I was not missing them.

No word from Universal Peds in the search for an LPN to care for Alec. I have a phone call into them this morning.

Turk and I feel that Alec is definatly not as good as he was 6 weeks ago. He rarely smiles (unless it is during a seizure) at us and just seems more out of it. He has been crying in the evening for a lot of the evening until he finally falls asleep at 10. I don't know if he is just that overtired or what. It is too hard to speculate what could be causing what.

Thanks for all your prayers and support everyone. We love the guestbook entries.

Sunday, August 22, 2004 1:14 PM CDT

Sorry it has taken me so long to write but we are having internet problems at home.

We did get out of the hospital on Thursday evening around 7:30. So far things have been going ok. Alec did not seem to tolerate a couple of feedings over the weekend. It was though he was trying to vomit but couldn't. I have to vent him with his mickey clip and then he seemed to do better.

This weekend was uneventful. Brad worked on a reroof and the boys and I stayed home for the most part. On Friday night we went to Darcy's house (Alec's aunt) and played and went on a very adventerous walk. On Saturday I dared to take both boys with me to Wal-Mart. It was a long stop trying to push a stroller and pull a cart behind, but we made it with only 1 bathroom break!

Alec has been saving his smiles for daddy and will smile at him but not mom!!

Tomorrow we go into the Children's Clinic to see a couple of drs. We first have to go in and get Alec weighed and give them a urine sample and have some blood drawn. Alec's weight is 8.5 kilos and he has to get down to 7.3 kilos to reach his ideal weight for the ketogenic diet. Until he reaches 7.3 kilos, Rachael (dietician) has cut his calorie intake down. Then at 10:45 we see Dr Neidich (gastroenterologist) and at 11:20 see Dr Carver (pulmonologist) for check ups. I will let you know how it all goes!

Thursday, August 19, 2004 9:01 AM CDT

Yesterday things seemed to go pretty well during the day for Alec.

We had our training in the morning with his dietician, Rachel. His formula consists of ross carbohydrate free formula, microlipid (fat), polycose (carbohydrate), and water. Brad ordered our gram scale that needs to measure down to the .1 gram. We will be able to get the microlipid and polycose through our pharmacy, and WIC is going to be getting us his formula. We also are getting some graduated cylinders to measure his liquids for his formula. Currently, Alec is allowed 35 ml of water after each feeding. All of the measurements and water allotment is changing every day so far.

Last night we went to the Turner County Fair in Parker. Monie came and picked Aaron up at the hospital and took him and Brayden to the fair. They were able to ride the rides all aftertoon and had a wonderful time. Turk and I went down to Parker last night and at supper with Heath & Monie and saw some of the barns. It was a fun time. Tanya of Laney Bear Care (see link below) came up the hospital and stayed with Alec for us. Alec was a little crabby last night, but after he pooped he was a lot better. Very big thank yous to Monie for taking Aaron for us and to Tanya for staying with Alec so that we could get out for awhile!

Hopefully Alec will be getting out of the hospital today. I will let you all know as soon as I do.

Tuesday, August 17, 2004 10:06 PM CDT

Day 2 of the diet.

This morning at 6am and 10am Alec did not seem to tolerate his feedings as well as he did last night. The 6am feed was worse. He was acting like he was going to throw up but the never did.

Overall I think that he did do fairly well. Dr Bunch added some water into his diet. Yesterday and this morning he was getting 20 ml of water after each feeding and now he is getting 35 ml. He was panting a bit she thought due to the extra acids from starting the diet. So far it has helped him settle down because he slept from 6pm to 9pm. Now it is a little after 10 and he is back to sleep! Lucky for mom!

Tomorrow we are going to get our training on making the formula. We have to get our scale ordered also.

Amy, Chris, and Haley (her website is listed below) stopped by to visit us this evening. We were excited to see them and Haley looks great! Amy gave me a book with stories parents of children with disablities have written. I am looking forward to starting it. I wish that I didn't have to work tomorrow and that i could read!

Hope all is well with everyone. Thanks for your prayers.

Monday, August 16, 2004 10:07 PM CDT

We have begun! Day 1 of the Ketogenic Diet.

Turk turned off Alec's feeding machine last night at midnight and he was able to have his first ketogenic feed at 6pm tonight. All went relatively well and Alec was not very crabby at all.

Once a day while we are in the hospital Alec will have to have a full metobolic panel of his blood and before each feeding he will have to have his glucose checked also. He now is going to have 5 bolus feeds of 120 ml at the following times 6am, 10am, 2pm, 6pm, and 10pm.

We are also changing his meds. The clonazepam and zyrtec have been changed to a carbohydrate free pill. The topamax has begun to be lowered for him to be weaned off and the lamictal has been increased.

For his formula he is getting ross carbohydrate free that we are also adding the following ingredients to: water, carbohydrate powder, and liquid fat. Alec will also have to have a vitamin added into his diet.

So far I have not been able to tell a difference in his seizure activity.

More updates tomorrow! Thanks for all your support everyone!!

Friday, August 13, 2004 4:44 PM CDT

Our vacation could not have been better. The weather was perfect for Alec and everyone was healthy. Prayers of thanksgiving are definately in order for that and also for Alec's home health. I spoke with Ellen Brubeck in the medicaid office on Wednesday and Alec is approved for 40 hours of home health a week from a LPN. We are so blessed.

We are currently beginning the process of trying to find the appropriate person to come to our home and care for Alec. I know that God will provide us with the perfect person and that we should be patient in waiting for this person.

Last Sunday after we returned from church and getting groceries, Aaron fell off of the couch and hit his head on a bolt on Alec's IV stand. I ended up taking him to the ER to go and get one stitch put in. When the nurse asked me what his birthdate was, I automatically responded 1/19/04 from habit! Aaron is totally fine and Aunt Lisa is going to be taking out his stitch for us sometime this weekend.

Alec got to spend his first full week ever (I think) at Rhonda's (daycare) house this week. Everything went fabulous.

Today Alec and I went to the Children's Care Rehab Center and got Alec casted for a helmet to correct his flat head. I ordered him a camouflage one! Alec absolutely screamed while the orthotist was holding the cast all over his head to his neck. The only thing I could see was his eyes, nose, mouth, and chin. After that session Alec took a nap! His helmet should be ready in 1-2 weeks.

On Monday Alec is getting admitted into the hospital to begin the ketogenic diet. I am reading a book that we are required to read before starting. We meet with the dietician at 1:30 on Monday and then are going to the hospital from there. We are expected to be there until Thursday evening or possibly a bit longer depending on how Alec tolerates his new feedings. I will be posting daily to let you all know how it is going.

Until next time.....

Friday, July 30, 2004 11:03 PM CDT

Hello Again!

On Wednesday I took Alec into Dr DeHaan for his rash and it was just eczema. I was hoping that that was all that it was because the Lamictal could possibly cause a rash.

Aunt Julie sent Alec some wonderful blankets and she made some splints for his hands! The splints are wonderful except for Alec is almost due for the next size up! His therapist at CCHS (Children's Care) thought the splints were the coolest and that Julie should make them to sell. And of course, Aunt Julie also sent Aaron a book about binkets (blankets) which he loves.

On Wednesday night the boys and I got to go into Aunt Diane's house and make beanbags for the bean bag board toss game that Brad constructed for us to take on our vacation this next week. We had lots of fun and Alec even looked like he was trying to move his hand to feel his fuzzy caterpiller that Diane has at her house for him.

Last night (Thursday) the four of us went over to Turk's cousin's house (Ryan and Kari) to visit their new baby girl, Regan. Regan is too cute and when we laid her by Alec, he kept turning his head to look at her.

Today was Alec's appt with Dr Johnson. We were so lucky to see her today as we were able to get Alec fitted for his wheelchair and bath chair since they had an opening when we were there. Dr Johnson wants to wait until Alec is 9 months old until we do anything about his leg braces since he is moving his feet somewhat. Alec has an appt 2 weeks from today to get his head casted for a helmet. Won't he just look cool! The type of wheelchair Alec is getting is called the Kid Kart. He should be able to have it until he is around 3 or so. CCHS is going to modify it and add a hook to the side so that we can hang his feeding backpack off of it. Alec will also have a buddy board put on the back of it so that Aaron can ride around on it while we are pushing Alec. We were told that it usually takes 2-3 months to get the equipment in, but since Alec is approved by disabled children's program, it might be sooner, like September maybe. I am so excited to get his stuff. It is almost like Christmas!

I do have another prayer request to add. Ellen Brubeck for the Medicaid office is going to be looking over Alec's paperwork to see if she can approved him for home health care. Please pray that Alec is able to have some home health, but also that God's will to be done and for us to continue to have the faith it is the best for Alec.

We will be on vacation until August 6th. We are praying for wonderful weather and a healthy time. We will talk to you all soon. Have a good week everyone!

Tuesday, July 27, 2004 10:20 AM CDT

Alec and Aaron got to spend the day Saturday and Saturday night at Grandpa and Grandma Blauwet's house. It was the first fairly uneventful stay. Just a few problems with the feeding machine, which we are in the process of getting a new one before we go on vacation.

We leave this Saturday, July 31, to go up to Lake Osakis, by Alexandria, MN for a week. We are all excited and have been saying many prayers that we have a healthy week.

Alec has an appointment with Dr DeHaan tomorrow because it is looking like he has some sort of fungus on his abdomen and parts of his legs and arms. Why couldn't this fungus appear last week when we were at the Dr already???

Alec also has an appt with Dr Julie Johnson on Friday in which we hopefully will get the ball rolling with his helmet, leg braces, bath chair, and wheel chair. I am so excited for this appt!!

The OT's at Children's Care hooked us up with a state program in which they are sending us a car seat for Alec. That is supposed to be arriving sometime this week.

Please be saying prayers of thanksgiving that we were able to have Anne come in and be our home nurse for the past month. We love her and I know that Alec loves her. We are so blessed to have been able to get to know her better and have her care for Alec.

Also, another prayer request, please pray for Alec and Rhonda as he begins regular daycare tomorrow. Please pray that all goes well for both of them.

Until next time.....

Wednesday, July 21, 2004 11:54 AM CDT

Hello All!

We are out of the hospital. We got out yesterday afternoon. None of the Drs ever found out anything, but if I had to guess I am pretty sure what it was! I poured about 1 ounze of 1ilk down Alec's tube by accident on Saturday about 1. His allergy tests came back ok, but milk and egg whites came back at a 1 on a scale of 6 with 6 being the highest. Something in his white count that begins with an e also came back high and they associate that with an allergic reaction. The drs said that that probably wasn't it but they didn't know forsure. Poor baby. Mom probably did this!!

All of his reflux stuff came back good so that we don't have to redo any surgery, so that was really awesome. Yesterday afternoon we went in and got Alec's Mic-Key clip in and his big tube taken out. It was so nice last night just to snuggle him up without having to deal with spilling junk all over and trying to be careful. Aaron spent last night with Grandma and Grandpa Blauwet and is down at the fair in Rock Rapids watching the cattle show today. It was such a quiet night last night. Turk and I were fighting over who got to hold Alec! I held him for the first 1/2 hour of Law & Order and Turk held him the 2nd 1/2 hour.

This morning Alec was so happy to see Anne (his nurse). I went into his bedroom this morning and was talking to him and he kept turning his head out toward the hallway (he must have heard Anne out there). As soon as she came in and started talking to him, Alec was just smiling away! Little squirt! Can't smile at mom! Today he has a double dose of therapy. PT and OT. He ought to be worn out tonight!

See you all soon!!

Sunday, July 18, 2004 1:26 PM CDT

Last night Alec had his first ride in an ambulance. I am sure that the whole town of Tea knew it too! Last evening we were at Ryan and Kari's house (Turk's cousin) and Alec had a couple of episodes where he was coughing, choking, and quit breathing. The second time it happened we called 911. He was breathing again on his own by the time that the EMTs arrived, but was having a hard time catching his breath. Made it into ER and chest Xray was fine. This morning we did an upper GI to check for reflux to see if his fundal wrap was still doing what it was supposed to be doing. That came back fine too, but they only put about half of a normal feed in for the test.

Tonight Dr Carver (pulmonologist) is going to be running a pneumogram on Alec to check his breathing. Dr Rabenburg (peds dr) ordered another reflux scan (the one with the radioactive stuff) to be done tomorrow. They are also going to be getting blood and running some allergy tests on him. His eyes are also swollen so Dr Carver is starting Alec on zyrtek. Dr Rabenburg mentioned started a med that would cause his secretions to be dryed up somewhat, but we are not sure yet. We are waiting to see Dr Bunch and hear what her input is and if his Clonazepam is what is causing that extra secretions.

Hopefully we will get all of these tests done tomorrow and possible get out, but most likely it will be Tuesday. I will keep you all posted.

Last week at Alec's infant massage class, he loved it. He was cooing and talking the whole time that I was rubbing his legs. He didn't like it when I started to rub and extend his arms, but after working with him a bit he relaxed. It is definatly something we are going to have to use daily!!

Last Wednesday (14th) I went to the Children's Care Rehabilitaion Center and had a car seat fitting with PT and OT. They put together a letter for me and sent it to the State Dept of Transportation and are working on getting me a loaner car seat through the State. We are so excited to get that for him. We are also looking forward to Alec's appt with Dr Julie Johnson in regards to possible leg braces and a helmet for his head that is becoming flat. Dr Johnson will also be able to prescribe Alec's bath chair that Angie (Alec's OT) has picked out for him. We can't wait to get that either as he loves his bath so much.

Talk to you all soon.

Tuesday, July 13, 2004 4:06 PM CDT

Today Dr Neidich decided to change Alec's formula from 24 calorie/ounze to 22 calories/ounze. Alec is packing on the pounds. He weighs 17#2oz! Aaron only weighed 19# at 1 year! Alec gets his mickey clip for his stomach put in in 1 week. We can't wait until we are done with that syringe! I am sure that Alec will be much happier that we can hold him much more often too!

Dr Bunch started Alec on a new seizure medicine called Limactil (sp?). It takes 8 weeks to get up to full strength on it. We are planning on starting the ketogenic diet sometime in August. Once the diet is started we can take him off of the Topamax and Clonazepam. It will be nice to be down to 1 med.

Tonight Alec and I have an infant massage class that we are attending. I am sure that Alec will love that and I (mom) am excited to learn. I will let you know how that all goes soon!

Monday, July 12, 2004 1:17 PM CDT

Anne (Alec's nurse) took him to the doctor today for his poor little cheeks. His terrible rash, redness, and oozieness on his face is eczema. So Dr. DeHaan put him on some cream and we hope to see it clear up soon. Alec is loving his physical and occupational therapy. He was so excited when Angie (OT) today held up a yellow ribbon with a lighted pen for him to look at. He was kicking his legs and talking up a storm. Alec has also been kicking at one of his toys that will light up and move when kick. We are so proud of him! He is making such progress!

Be sure to check the journal tomorrow as we have 2 appts. One at 11 am with Dr. Neidich (gastro) and one at 2 pm with Dr. Bunch (nuero). Hopefully Dr. Neidich will cut down the extra calorie formula for Alec because he is becoming such a fat little toad.

PS. Check out the new pictures in the photo album!

Monday, July 5, 2004 12:54 AM CDT

Alec just celebrated his first 4th of July! He had a wonderful time at the parade in Inwood on Saturday and was good as gold as his dad tried to "re-live" the good ol' days by playing baseball in Humboldt last evening. Much to our surprise dad almost hit a home run! During the fireworks, Aunt Pam watched Alec in the car and put him to sleep. Alec seems like he is feeling much better. We started him back on the clonazepam and he was totally out of it for a few days. So now we cut back his dose and he has been more awake. It is nice for us to see his eyes again! We hopefully will have a fairly uneventful next few days as we have no Dr. appts this week.

Wednesday, June 30, 2004 2:34 PM CDT

Alec was doing quite spectacular after surgery for his g tube; very few seizures, very alert, very content. In the last couple of days he has been quite irritable and his muscle tone has been increased quite a bit. He is also started to have another seizure type along with the spasms. We have started him back on his clonazepam (to help with seizures and muscle tone) and after two doses he is already sleepy and his eyes are heavy. We go back and see Dr. Bunch (his neurologist) on the 13th of July. I hope we can start something new soon.

Monday, June 28, 2004 1:21 PM CDT

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